File contents

 

 

CONTENTS 

 

 

Foreword i 

 

 

 OVERVIEW & ANALYSIS 

 

Executive Summary and Findings 1 

 

Disabled Politicians and Policy Makers Address 3 
Popular Workshop on Governance, Rehabilitation International 
African Conference, Durban, October 1�2, 2003 

By Barbara Duncan 

 

People with Disabilities in Positions of Governance: 7 
An analysis of impact 

By Ilene Zeitzer 

 

 AFRICA 

 

Lesotho 

�We have more responsibility to the cause:� 35 
an interview with Moses Masemene, Minister of Justice, Lesotho 

By Ilene Zeitzer, conducted during the Rehabilitation International 
African Regional Congress in Durban, South Africa, October 2003 

 

Malawi 

�When you�re in government, the voices of the voiceless are heard:� 37 
an interview with Susan Chitimbe, Minister Responsible for Persons 
with Disabilities, Malawi 

By Ilene Zeitzer, conducted during the Rehabilitation International 
African Regional Congress in Durban, South Africa, October 2003 

 

South Africa 

Celebrating & mourning a pioneer in South Africa's 43 
disability rights movement: Maria Rantho 

By Shelley Barry, Office on the Status of Disabled Persons, South Africa 

 

The Girl Who Asked Why: an interview with 47 
Hendrietta Bogopane, M.P. 

By William Rowland 

 


 

 

 

 

 

 

 

A Voice in the Presidency: an interview with 53 
Sebenzile Matsebula of South Africa 

By William Rowland 

 

�Parliamentarians with Disabilities�make sure that 61 
it does happen:� an interview with Sebenzile Matsebula, 
Director of the Office on the Status of Disabled People, South Africa 

By Ilene Zeitzer, conducted during the Rehabilitation International 
African Regional Congress in Durban, South Africa, October 2003 

 

�It�s about mainstreaming, but it�s also about having expertise 67 
that can be shared:� an interview with Charlotte McClain Nhlapo, 
Commissioner, South African Human Rights Commission 

By Ilene Zeitzer, conducted during the Rehabilitation International 
African Regional Congress in Durban, South Africa, October 2003 

 

�I am there to personally articulate what disability is all about:� 75 
an interview with Wilma Newhoudt-Druchen, M.P. 

By Ilene Zeitzer, conducted during the Rehabilitation International 
African Regional Congress in Durban, South Africa, October 2003 

 

Uganda 

�We�re acting as role models for young disabled persons 81 
and even parents of disabled children:� an interview with 
Florence Nayiga Sekabira, Minister for Disability and Aging, Uganda 

By Ilene Zeitzer, conducted during the Rehabilitation International 
World Congress in Oslo, Norway, June 2004 

 

Selected Articles and Reports Published 91 
in DisabilityWorld 2000-2005: Africa 

 

 

 EUROPE 

 

Georgia 

Protection of Disabled People's Rights 105 
in Georgia: Highlights 1988-2004 

By George Kokhreidze, former Member of Parliament, Republic of Georgia 

 


 

 

 

 

 

 

 

Great Britain 

Breaking Taboos, Retiring Myths, Raising Expectations: 113 
an interview with Anne Begg, Member of the U.K. House 

of Parliament from Aberdeen South, Scotland 

By Ilene Zeitzer, conducted via telephone in June 2004 

 

�The agenda should be set by disabled persons, 123 
not by employers, not by ministers:� an interview with 
Bert Massie, Chair, UK Disability Rights Commission 

By Ilene Zeitzer, conducted during the Rehabilitation International 
World Congress in Oslo, Norway, June 2004 

 

Norway 

�In one of the richest countries in the world, we still have to 133 
raise awareness of disability:� an interview with Lars �deg�rd, 
Chair, Norwegian Association of the Disabled (NAD) 

By Ilene Zeitzer, conducted during the Rehabilitation International 
African Regional Congress in Durban, South Africa, October 2003 

 

Improving Policies, Transportation & Education: 139 
an interview with Ann Marit Saeb�nes, former Mayor of Oslo, Norway 

By Ilene Zeitzer, conducted during the Rehabilitation International 
World Congress in Oslo, Norway, June 2004 

 

Sweden 

�It is important to develop good relations with the 145 
disability movement:� My 14 Years in Swedish Political Life 

By Bengt Lindqvist, former Minister for Health and Social Affairs, Sweden 

 

Europe�s First Minister with a Disability, Father of 151 
the Standard Rules: an interview with Bengt Lindqvist, 
former Minister for Health and Social Affairs, Sweden 

By Ilene Zeitzer, conducted during the Rehabilitation International 
World Congress in Oslo, Norway, June 2004 

 

Selected Articles and Reports Published 161 
in DisabilityWorld 2000-2005: Europe 

 

 


 

 

 

 

 

 

 

 LATIN AMERICA 

 

Brazil 

Celia Leao is "On a Mission" in Brazilian Politics 175 

By Kay Schriner 

 

Mexico 

Meeting the Challenges of Starting Over in Mexico: 177 
an interview with Victor Hugo Flores, Office of 
Representation for the Promotion and Social Integration for 
Persons with Disability, Office of the President, Mexico 

By Ilene Zeitzer, conducted during the Rehabilitation International 
World Congress in Oslo, Norway, June 2004 

 

Selected Articles and Reports Published 183 
in DisabilityWorld 2000-2005: Latin America 

 

 

 MIDDLE EAST 

 

Lebanon

Disability Groups in Arab Countries Promote Peace: 205 
an interview with Dr. Nawaf Kabbara of Lebanon, 
President of Arab Organization of Disabled People 

By Laura Hershey, conducted in June 2001 

 

Selected of Articles and Reports Published in 211 
DisabilityWorld 2000-2005: Middle East 

 

 

 NORTH AMERICA 

 

USA 

Linking Employment & Health Care in the U.S. 213 
Social Security Administration: an interview with Susan Daniels, 
former Deputy Commissioner, U.S. Social Security Administration 

By Ilene Zeitzer, conducted in Washington, D.C. in April, 2004 

 

 


 

 

 

 

 

 

 

�The Council Is a Working Model of Democracy:� 227 
an interview with Lex Frieden, current Chair and 
former Executive Director of U.S. National Council on Disability 

By Ilene Zeitzer, conducted via telephone in May, 2004 

 

Importance of Integrating Disability into Mainstream Issues: 237 
an interview with Judy Heumann, Advisor on Disability & Development, 
World Bank and former Assistant Secretary, U.S. Department of Education 

By Ilene Zeitzer, conducted in Washington, D.C. in November, 2003 

 

�My Being Here Has Prepared Congress for 247 
Other Individuals with Disabilities to Serve:� 
an interview with U.S. Congressman James Langevin 

By Ilene Zeitzer, conducted in Washington, D.C. in November, 2003 

 

Selected Articles and Reports Published in 253 
DisabilityWorld 2000-2005: North America 

 

 ASIA PACIFIC 

 

New Zealand 

New Zealand's First Disabled Human Rights Commissioner: 269 
an interview with Ross Brereton 

By Robyn Hunt, conducted in 2001 

 

Selected Articles and Reports Published in 273 
DisabilityWorld 2000-2005: Asia Pacific 

 

 INTERNATIONAL 

 

Selected Articles and Reports Published in 291 
DisabilityWorld 2000-2005: International 

 

Selected Articles and References on 309 
Improving Accessibility of Elections 

 

Recommended References on 313 
Governance & Disability 


 Foreword : Disability and Governance 

 

By Barbara Duncan of RI and Jennifer Geagan of WID, Editors 

 

 

 

 

 

 

 

In 1999 in the offices of the World Institute on Disability, when selecting critical 
international topics for the Ideas for the New Millennium project, one intriguing new 
phenomenon was suggested by a researcher: disability and governance. Following 
constitutional changes in both Uganda and South Africa, through different political 
processes, disabled persons were now being elected to parliaments and appointed as 
ministers expressly to represent citizens with disabilities. This news reminded all of us in 
the room of other politicians we knew or knew of with disabilities in Asian, European, 
Latin and North American countries�some elected, some appointed to high government 
offices, ranging from mayors to ministers. 

 

DEFINING OUR OBJECTIVES 

 

The resultant lively conversation led us in several directions: how to track these 
developments, how to determine what impact these individuals were having on their 
political peers, on legislation and policies, and on political processes. Were governmental 
and legislative officials with disabilities making a difference? If so, what kind of 
differences and were they measurable? 

 

Following a literature search, it became clear that this topic was largely unexplored and 
we would be charting new territory. 

 

EXPANDED SCOPE 

 

This five-year exploration of intersections between disability and governance has led us 
around the world and down many unanticipated paths. Through a myriad of interviews; 
project seminars involving 300 people, held as part of RI congresses in Durban and Oslo; 
and more than 200 reports filed in DisabilityWorld (www.disabilityworld.org), the topic 
of disability and governance grew to encompass three distinct but quite often interrelated 
aspects: 


� Portfolio and impact of elected and appointed governmental officials with 
disabilities 
� Structure, scope and impact of national disability policy bodies 
� Improving accessibility of democratic processes, such as voting and elections 


 

Due to limited resources, this report concentrates primarily on the first topic, and 
tangentially on the second topic through a series of interviews and an analysis of the 
interviews. However, the interviews are augmented by news reports from 
DisabilityWorld that focus on all three topics. 

 

As an example of the interrelationships, the five year focus on South Africa enabled by 
the IDEAS project has been a sufficient window of time to demonstrate that the growing 
number of disabled members of parliament, selected from the disability movement, are 
interacting regularly with the national policy body, the Office on the Status of Disabled 
Persons based in the Presidency, and together with the South African Human Rights 
Commission, making substantial headway in improving legislation, policies and 
accessibility of electoral information and processes. 

 

UNANTICIPATED PATHS 

 

During the course of this project, the international momentum towards the U.N. disability 
rights Convention greatly accelerated, bringing together governments, national human 
rights commissions and non-governmental organizations for largely transparent 
deliberations over the last three years. It was evident to many participants in these 
consultative and drafting meetings in New York that the countries with experienced 
disabled politicians and lawyers on their delegations were being looked to for leadership 
in both substance and suasion. Reports of some of the U.N. meetings to develop the 
Convention are highlighted in the international news section of this report. 

 

ACKNOWLEDGEMENTS 

 

The DisabilityWorld team of editors and reporters were universally enthusiastic about 
this topic and successful in tracking down articles, but the following individuals deserve 
particular mention: 

� Kathy Martinez of WID, Director of the Ideas for the New Millennium project, 
who hired outstanding governance reporters for DisabilityWorld and helped 
organize the two international seminars on the topic; 
� Kay Schriner, Ph.D., researcher based at the University of Arkansas, who first 
suggested the topic and reported on it 2000-2003 in DisabilityWorld; 
� William Rowland, Ph.D., of South Africa, who pursued the topic from the 
frontlines of history and who organized the outstanding Durban seminar in 2003; 



� Luis Fernando Astorga, founder of the Costa Rican Forum for Human Rights of 
Disabled Citizens, who devoted many articles and interviews to how this subject 
is being approached in Latin America; 
� Ilene Zeitzer, MA, President of Disability Policy Solutions and Executive 
Director of the U.S. International Council on Disabilities, who was commissioned 
to conduct a series of interviews in 2003-2004, and subsequently analyzed them 
for similarities and differences; and 
� Hale Zukas of WID, who drew on more than 30 years of disability advocacy for 
legislative improvements to scrutinize, rewrite and proofread many of the 
documents. 


 

AS WE GO TO PRESS� 

 

As 2005 begins and we assemble this report, two very different European events with one 
similarity are being featured in the international news media: the powerful Home 
Secretary of the U.K. was forced to resign and the Ukraine was forced to rerun its 
contested presidential election. David Blunkett, Britain�s first high level blind politician, 
who had risen from Education Minister to the second most powerful position in 
government, was unexpectedly toppled. According to several disability websites, his new 
vulnerability has led the media to speculate how his blindness, rarely publicized while he 
was in power, may have affected his political viability. For example, the London Reuters 
office on March 12 concluded an article as follows: 

 

�Blunkett, who reached the top of national politics despite being born poor and 
blind, was one of the most popular figures in government for his tough law-
and-order policies and widely admired personal struggle.� 

 

In the Ukraine, conflicting reports are emanating daily from Kiev about the last minute 
constitutional and court challenges that have complicated the battle between candidates 
Yushchenko and Yanukovych. A December 26, 2004 report from the Associated Press by 
Mara D. Bellaby stated that: 

 

�Yesterday�s court decision brought a new twist in the final hours before polls 
open. The court ruled that amendments allowing people with only certain 
disabilities to vote at home were unconstitutional, and it ordered that all who 
were unable to reach polling stations because of a disability or ill health be 
allowed to vote at home. 

 

�The ruling could benefit Yanukovych, who pushed for the restrictions to be 
lifted, saying they would deprive millions of their right to vote. However, it 
could also impair his campaign team�s announced plans to help disabled voters 
reach polling stations. They are considered a key source of backing of 
Yanukovych�� 


 

At this moment, it is too early to assess the significance of the �disability angle� in either 
of these developments, but certainly, in both one of Europe�s oldest democracies and in 
one of its newest, we are viewing the denouement of new aspects of disability and 
governance. 

 

FUTURE RESEARCH 

 

We believe this final report is timely, substantive and in effect, the first international 
overview of this topic. We hope it also provides a significant source of �raw material� for 
future researchers. 

 

In reviewing this volume, we identified several possibilities for future research: 

� Exploring the experience of Asia more in depth, where there are elected officials 
with disabilities in Korea, Japan and the Philippines, just to mention a few; 
� Exploring the experience of Latin America, where disabled persons are being 
appointed to Human Rights Commissions, and there is a nationwide association of 
disabled politicians in Brazil; 
� Reviewing the experience of the International Foundation for Electoral Systems, 
that supported the increased accessibility of elections in developing countries over 
the last five years; and 
� Investigating the various new technologies now in trial or on the immediate 
horizon to make voting and elections more accessible to all disabled citizens. 


 


 Change from Within: 
Executive Summary and Findings 

 

 

 

 

 

 

This 321-page volume presents the results of a five-year international investigation into 
disability and governance. It examines three interrelated topics: the impact of disabled 
individuals who have been elected or appointed to high governmental office; the scope, 
structure and impact of national disability policy bodies; and the increasing accessibility 
of the machinery of democracy, especially elections and voting. �Change from Within� is 
the first international report on this significant topic. 

 

SCOPE OF VOLUME 

 

Included are: in-depth interviews with politicians and officials in Africa (Lesotho, 
Malawi, South Africa and Uganda), Europe (Georgia, Great Britain, Norway and 
Sweden), Latin America (Brazil, Mexico), Middle East (Lebanon), Asia Pacific (New 
Zealand) and North America (USA); an analysis of the interviews; a report of an 
international symposium on governance and disability held in Durban in 2003; and an 
array of news items and recommended resources on disability and governance from more 
than 50 countries. 

 

COMPARISONS AND CONTRASTS 

 

Nearly all of the interviewees represent democracies, but their portfolios, determined by 
national election and appointment laws and procedures, varied vastly. For example, 
concerning elected representatives, the experience ranges from Uganda, where disabled 
individuals are elected directly to parliament by disabled citizens to represent disability 
concerns, to South Africa, where disabled individuals are selected by the disability 
movement to run for reserved disability positions in parliament, to the USA and UK, 
where disabled individuals have been elected to legislatures to represent a geographic 
area, and have no particular portfolio regarding disability. There is a comparable diversity 
of scope and structure of the three national disability policy bodies examined in Mexico, 
South Africa and the USA, and of the national human rights commissions in New 
Zealand, South Africa and the UK. 

 



FINDINGS 

 

In summary, the findings are that: 1) overall, the governmental officials with disabilities 
are making substantive inroads into impacting legislation and policy; 2) but their progress 
is often slowed by having to act simultaneously as disability awareness educators, and by 
the requisite experience they must first gain to become effective in large bureaucracies; 
3) in most countries, this is a new phenomenon�the presence of high level governmental 
officials with disabilities�and in general it will be easier to track outcomes over time, 
with follow-up research; 4) this first comparison of national policy bodies also 
demonstrates impact and could benefit from a much more in-depth examination in the 
future; and 5) there are similar developments taking place in Asia and in Latin America, 
where additional exploration could be useful. 

 

Due to lack of resources, there is no substantive analysis of worldwide progress in 
making democracy more accessible, but the encouraging number of news articles 
included demonstrate that serious efforts are underway in all regions. 

 

SPONSORS 

 

This study was undertaken by the World Institute on Disability in collaboration with 
Rehabilitation International as part of the five year IDEAS for the New Millennium 
project, supported by the U.S. National Institute on Disability and Rehabilitation 
Research, 1999-2004.


 Disabled Politicians and Policy Makers 
Address Popular Workshop on Governance, 
Rehabilitation International African Conference, 
Durban, October 1�2, 2003 *

 

By Barbara Duncan 

 

 

 

 

 

 

 

An impressively articulate and forceful group of politicians and policy makers with 
disabilities from Malawi, Lesotho, South Africa, Norway and the U.S. kept an audience 
of approximately 100 spellbound for nearly five hours on October 2. The workshop on 
�Emerging Voices: Disabled People in Government and Governance� was part of 
Rehabilitation International's regional African Conference, held October 1�2 in the 
seaside city of Durban. 

 

The workshop was organized by the World Institute on Disability as an activity of the 
International Disability Exchanges And Studies (IDEAS) project, supported by the U.S. 
National Institute on Disability and Rehabilitation Research. Kathy Martinez, Deputy 
Director of WID, set the scene for the workshop, which had been planned in 
collaboration with William Rowland, President of the South African National Council for 
the Blind and RI staff. 

 

Held as a parallel session, the workshop attracted so many participants that the room had 
to be doubled in size during the tea break. Apparently it was the first opportunity for 
many of the African conference participants to discuss issues with their political 
representatives in person and they peppered the speakers with questions and comments. 

 

FIRST SESSION: POLITICIANS 

 

* This article originally appeared in DisabilityWorld 20 (2003), http://www.disabilityworld.org/09-
10_03/gov/durban.shtml 


The workshop was structured in two sessions, the first devoted to the experiences and 
impact of elected or appointed disabled politicians, and the second an examination of 
how various disability policy structures were working at the highest levels. Chaired by 
Judy Heumann, Disability Policy Advisor to the World Bank, the first session featured 
the following speakers: Moses Masemene, Minister of Justice, Lesotho; Susan Chitimbe, 
Minister Responsible for Disabled Persons, Malawi and Wilma NewHoudt-Druchen, 
M.P., South Africa. Although the three have very different disabilities, they had 
experienced some of the same problems of accessibility of parliaments, of official 
buildings and of information: Minister Masemene spoke about how his need for Braille 
documents had to be constantly explained and justified; Member of Parliament 
NewHoudt-Druchen told of how she was forced to make a special appeal to other 
parliamentarians so that her sign language interpreter was allowed on the floor; and 
Minister Chitimbe described how difficult it was to carry out a day's duties on crutches 
without becoming overly fatigued. 

 

For the most part, however the three speakers concentrated on the progress they felt they 
were making, both in advancing disability rights and services in their countries and in 
changing attitudes about the capabilities of disabled persons though their activities as role 
models and mentors. Examples given were a new amendment to the Broadcasting law in 
South Africa, requiring the main television network, SABC, to improve access to 
programming for people with disabilities; and efforts in Malawi to empower disabled 
people's organizations (DPOs) to take a more active part in civil society and politics. The 
Minister of Justice from Lesotho reminded the audience that his responsibilities were not 
just to the Kingdom's disability constituency but to promote justice for all in a way that 
was inclusive. M.P. NewHoudt-Druchen commented that this was indeed a major 
challenge�to learn to be an effective parliamentarian or minister, not just an effective 
representative of disabled people. Minister Chitimbe said that more disabled people must 
go into politics as this is one way to demonstrate competency, � directly countering most 
people's perception of us as incompetent and unable.� 

 

At the close of the first session, Shuaib Chalklen, newly appointed Chief Executive 
Officer of the African Disability Decade, commented that the challenge of building 
political acumen and the exchange of this type of experience across the continent would 
be a central issue during the African Decade and he could envision the creation of a 
group of African politicians with disabilities. He noted news of disabled political 
appointees in Uganda, Namibia and Zambia, as well as the countries represented in the 
Governance workshop. Minister Masemene announced that an African Disability 
Convention would be put forward at a regional meeting in Rwanda. 

 

SECOND SESSION: POLICY STRUCTURES 

 

The second session took a closer look at how disability policy structures are evolving and 
how they interface with the highest levels of national governments. This session was 


chaired by Albert Peters, Secretary General of the Kwazulu Natal Federal Council on 
Disability, South Africa and speakers were: Sebenzile Matsebula, Director of the Office 
on the Status of Disabled People, based in the Presidency, South Africa; Lars �deg�rd, 
Secretary General of the Norwegian Association of the Disabled; and Charlotte McClain, 
Commissioner, South African Human Rights Commission. 

 

Again, presentations and discussions were detailed and intense, demonstrating that 
substantial progress had been made in the last few years in establishing mechanisms to 
advance disability policy with clearer channels of input and more transparent processes. 
The elevation of disability issues to �status offices within the Presidency� (South Africa, 
Mexico) or to federally-supported national disability councils (Scandinavian countries, 
U.S.) and the addition of disability issues to the portfolios of national human rights 
commissions (about 30 countries on all continents) 

 

Matsebula outlined the four processes or responsibilities of the South African Office on 
the Status of Disabled Persons: coordination, facilitation, monitoring and evaluation. 
Working together, these sectors developed an Integrated Disability Strategy. Her office 
also provides training to governmental officials on how to integrate disability concerns 
into departmental portfolios, and will provide oversight for the African Disability 
Decade. 

 

McClain, a human rights lawyer, traced the rise of the growing international acceptance 
of reframing disability rights as human rights. Acknowledging how some see discussions 
about human rights as just more verbiage, especially in developing countries, she gave 
examples of how rights can impact reality and quoted Nobel Prize economist Amartya 
Sen, who pointed out that a famine has never taken place where there is a free media. 
McClain also challenged the group that it was now time for �the movement to transcend 
disability politics and to start to see all the basic rights as indivisible and interconnected.� 
She said, �It is artificial to pigeonhole disability�if you only focus on the disability 
stream, you won't see the broader connections between alleviation of poverty and 
equality.� 

 

�deg�rd gave a power point overview of how the Norwegian National Association of the 
Disabled impacts policy through its 23,000 members-driven initiatives, including anti-
discrimination legislation and projects in developing countries, mostly in Africa. 
Knowing that most people thought of Norway as an advanced country concerning 
disability issues, he commented that his country was one where the government would 
gladly give you a free wheelchair, but you couldn't go anywhere, compared to the U.S., 
for example, where the government rarely gave you a wheelchair, but you could go 
everywhere. In summary, he felt the main job of NAD was to keep reminding disabled 
Norwegians that the status quo was to make you more comfortable in your own home, 
but not in society and to insist that government become more supportive of the right of 
disabled children and adults to become part of their communities. 


* This article originally appeared in DisabilityWorld 26 (2005), 
http://www.disabilityworld.org/12-02_05/gov/pwdingov.shtml 

 
People with Disabilities in Positions of 
Governance: An analysis of impact *

 

By Ilene Zeitzer 

 

 

 

 

 

 

 

�By definition, a government has no conscience, 
sometimes it has a policy, but nothing more.� 

�Albert Camus (1913�1960) 

 

�The welfare of each is bound up in the welfare of all.� 

�Helen Keller (1880�1968) 

 

GOAL OF THE PROJECT 

 

This report seeks to answer some basic questions about the effect of having people with 
disabilities in high positions of governance. Does it really make a difference? When 
people with disabilities serve in high positions of leadership, do governments develop �a 
conscience;� at least, do non-disabled politicians think about the impact on people with 
disabilities when they develop policies? What are the systemic differences in the ways 
that some countries are integrating disabled people in positions of governance? What are 
the differences, if any, in being elected versus being appointed to positions of high 
leadership concerning self-perceptions of disabled leaders? Does having disabled 
colleagues raise the awareness of non-disabled politicians on the issues that stem from 
coping with a disability in a non-disabled world? Once in positions of governance, do 
disabled individuals see themselves as spokespersons for all other disabled people or do 
they avoid or shy away from being perceived as a �poster child� or a single issue expert? 
Finally, what do disabled leaders see as their impact on the welfare of their respective 
countries? 

 


BACKGROUND 

 

This study was undertaken on behalf of the National Institute on Disability and 
Rehabilitation Research (NIDRR) of the United States Department of Education. It is part 
of the five year International Disability Exchanges and Studies (IDEAS) for the New 
Millennium project by the World Institute on Disability in collaboration with 
Rehabilitation International (RI) based in New York, the International Living Research 
Utilization (ILRU) project at The Institute for Rehabilitation and Research in Houston, 
and the Inter-American Institute on Disability (IID), based in the Washington, D.C. 
metropolitan area. 

 

The study was initiated because, although since the 1980s people with disabilities have 
been elected and appointed to high governmental positions in many countries, the impact 
of this phenomenon, thus far, does not seem to have been analyzed, measured or even 
explored, at least as far as could be detected through literature searches. 

 

There are probably many explanations for this lack, but the most likely one is that 
disabled individuals have only gained access to high levels of governance in various 
countries fairly recently. Much as the ascent into leadership by women a few decades 
before, the research that studied the impact of the gender shift lagged behind the actual 
gains. While there are similarities to the situation of women in leadership positions, the 
issues for disabled individuals are far more sharply cast and arguably much more difficult 
to overcome. Though there were, and unfortunately probably still are, governmental, 
political and other groups in every part of the world who question the capacity of women 
to occupy positions of leadership, for the most part, those societal obstacles have become 
recognized as fallacious and/or outdated thinking. 

 

Unfortunately, the same cannot be assumed when it comes to having disabled individuals 
in positions of leadership. Helen Keller, the blind and deaf American author and lecturer 
who was known throughout the world expressed it best when she said, �My darkness has 
been filled with intelligence, and behold, the outer day-lit world was stumbling and 
groping in social blindness.� Although Ms. Keller died in 1968, the �social blindness� 
she referred to unfortunately continues to survive in many places and certainly among 
many individuals. Part of the reason for this is the actual absence from mainstream 
societies of disabled persons. 

 

TYRANNY OF LOW EXPECTATIONS 

 

Either because of separate service systems such as residential or educational institutions 
or because of physical access barriers, people with disabilities are often isolated and 
unable to participate in the mainstream. Thus the non-disabled society never sees or 
focuses on disabled people�they are marginalized and out of view. That absence results 
in what some refer to as the �tyranny of low expectations.� In other words, having no 


experience with interacting with disabled individuals, non-disabled people have 
universally low expectations of their capabilities, based largely on myth and stereotype. 
The non-disabled world either views people with disabilities as sick or needy or both, but 
in any case, not as workers and even less so as leaders in positions of high responsibility. 
Their disability is assumed to be such a limitation that it is assumed they could not fulfill 
the demanding duties of their office. 

 

The worldwide community of people with disabilities has fought for decades to retire or 
shun the medical model of disability that has so darkly colored and limited the views of 
non-disabled people. But in many parts of the world, disability still equates with illness. 
Disabled individuals travel halfway across the globe by jet planes into airports that have 
been made accessible only to be met, not with accessible taxis, but with ambulances. 
Labor laws in many countries still mandate shorter work days, specified rest periods and 
longer vacations for all workers with disabilities irrespective of whether the particular 
disability warrants it or the individual worker wants or needs it. Whether driven by good 
intentions or not, this tyranny of low expectations equates to societal ignorance and 
prejudice that all of the people interviewed for this report have had to deal with during 
their lifetime as disabled individuals and most certainly in their roles as leaders. 

 

BASIS OF THIS ANALYSIS 

 

This analysis is based on a series of interviews conducted over approximately one year 
with disabled leaders from several countries of the world. Most of the interviews were in 
person with many of them in conjunction with the Rehabilitation International African 
Regional Conference held in Durban, South Africa in September 2003 or in conjunction 
with the RI World Congress held in Oslo, Norway in June 2004. Some interviews were 
conducted via telephone. In addition, two symposia on the subject of disabled people in 
positions of governance were held in Durban and Oslo at the above-mentioned 
conferences. The information gathered provides insight into the difficulties encountered 
by disabled individuals as they assume positions of leadership. None of them said that 
they suffered from self-doubt or fear that they were unprepared for the tasks that lay 
ahead. On the contrary, most expressed that they had the ability, training and in-depth 
knowledge needed to achieve the tasks of their particular positions. In addition, many 
spoke of feeling that being disabled made them especially well suited to handle the 
requirements of their jobs because their disabilities provided them with specific insights 
that their non-disabled counterparts simply did not have. Nevertheless, all of them to a 
greater or lesser degree have struggled to �fit� into a non-disabled framework; to speak 
for disability but not to be only about disability. In the sections that follow, these themes 
will be explored in greater detail. 

 

I. HOW GOVERNMENTS HAVE INTEGRATED PEOPLE WITH DISABILITIES INTO 
LEADERSHIP POSITIONS 

 


The manner in which the subjects of this report gained leadership roles is as different as 
are their backgrounds, cultures, languages or nature of their disabilities. Ostensibly, one 
could argue that there are only two options for how these leaders came into positions of 
power: either they were elected or else they were appointed. However, within those two 
broad possibilities, there are, in fact, several variations on a theme. 

 

Elected Officials 

 

Some, like Anne Begg, a Member of Parliament from Scotland, or James Langevin, a 
Member of the U.S. House of Representatives, were elected through a general election 
process in which the fact of their disability (both are wheelchair users) was not relevant, 
or at least had nothing to do with why they were on the ballot. In direct contrast, 
individuals like Wilma Newhoudt-Druchen, a deaf Member of Parliament in South 
African, was recruited to have her name placed on the ballot because she is a person with 
a disability. The African National Congress (ANC), the leading party in South Africa, 
deliberately recruited highly qualified disabled individuals in different areas by working 
directly with the major disability Non-Governmental Organizations (NGOs). The NGOs 
were asked to develop a list of well-qualified individuals and then their names were 
placed on the party's national list. The ANC's strategy is quite simply to ensure through 
this process that people with disabilities will have a voice in Parliament. It is part of their 
overall philosophy to counter the oppressive tactics of the past apartheid governments 
where minorities were excluded. Thus, in 1999, 10 individuals with disabilities became 
Members of the South African Parliament�the highest representation of any country in 
the world. As a result, Newhoudt-Druchen is expected to represent the needs of disabled 
South Africans. As she said, �I myself am not really usually emotional, but I know 
sometimes in my speeches in Parliament, I am emotional about disability issues because 
I'm there to articulate personally what being disabled is all about.� 

 

In sharp contrast, Anne Begg initially saw her role quite differently: �When I was elected 
first, I was actually quite keen not to be seen as the disabled MP and if anything, I 
probably shied away from even talking about disability issues. I tried first of all to win 
my support or get my credibility of being an effective MP on behalf of my constituents 
who are not disabled, but are the people who live in my district in Aberdeen. The only 
way I could do it was by not becoming a mouthpiece for disabled people.� Similarly, 
U.S. Congressman Langevin said, �In my service in government, I've never made 
disability issues my primary focus. Just as being disabled is part of who I am, it is not the 
sole focus of who I am or what I do here. I have many other responsibilities that I take 
very seriously.� Bengt Linqvist, who is blind, was first elected to the Swedish Parliament 
in 1982. Though he most certainly did not shy away from disability issues, and in fact, 
said, �I still held the position of Chair of the disability movement the first three years 
when I was in Parliament, so of course they used me very much and we made a lot of 
fuss.� However, he said he wanted to stress that he had other portfolios and that was very 
important to him. �I got other responsibilities immediately and that was very 


encouraging. I got into family policy and childcare and training of doctors.� Thus, there 
is a major difference in the thrust or impact of these two very different ways of ascending 
to leadership positions. In the South African example, the intent is to right previous 
wrongs by taking pains to ensure that, just as with other minorities, people with 
disabilities are represented in the governance process and have their views articulated by 
people who are seen as most competent on or best able to know the issues. In the U.K., 
U.S. and Swedish examples, almost the opposite view appears to be in effect: namely that 
disabled individuals are so much a part of the mainstream that they can be in positions to 
speak for all their constituents, the vast majority of whom are not disabled. 

 

Of course, both situations are something of an artifact because, in truth, Newhoudt-
Druchen's deafness does not necessarily make her any more of an expert than a non-
disabled person might be, concerning the problems of people who are quadriplegic or 
who have mental illness, for example. People with disabilities are not a homogeneous 
group any more than are Hispanics, so to a degree, speaking for them or representing 
them is something of a conceit. Begg addressed just that point by saying, �I've been very 
keen to avoid that label [of a mouthpiece for disabled people] because disabled people are 
not a homogeneous group, we've all got different views, different aspirations, different 
expectations and that often, one person cannot speak on behalf of all disabled people.� 
Representative Langevin voiced similar sentiments: �I don't seek to be the sole 
spokesman for disability issues, or in a sense, the poster-child for those issues.� On the 
other hand, it is equally misleading to paint the positions of Begg and Langevin as so 
much a part of the mainstream that they can be free to represent all their constituents 
without concern or reference to disability. The truth is that each of them in their 
respective countries is unique�they are almost the only disabled people elected to high 
levels of government�so, by default, they become spokespersons for disabled 
individuals. As will be seen in a following section, both came to that recognition fairly 
quickly after assuming the duties of their offices. 

 

Florence Nayiga Sekabira's election to the Parliament in Uganda was a different process 
than either of the above examples. Sekabira, who has a mobility impairment, explained 
that since 1996, Uganda has embraced an all encompassing movement system of 
government whereby there are no parties but instead, all groups elect their own. 
Therefore, disabled people had to organize to elect their own leaders to the five seats in 
Parliament reserved for them. It was totally up to the disabled Ugandans to decide how to 
divide up the representation. They began by dividing the country into four regions and 
then decided on exactly how they wanted the representation to be accomplished. For 
example, they determined that they wanted one seat for women with disabilities and 
therefore, it could be contested for only by disabled women. The other four seats were to 
be contested for by both men and women to try to ensure balanced representation. Then 
they organized Electoral Colleges to which each district in Uganda sends representatives. 
When the time comes to elect MPs, each district is asked to send four people�one with a 
visual impairment, one with a physical disability, one with a hearing disability and the 


last with any other disability. They all come to the Electoral College in Kampala, draft 
their manifesto, and whoever wishes to serve as a Member of Parliament goes to 
campaign. Only disabled people can vote for their candidates and whoever they elect then 
become MPs and do not require any endorsement from government. Minister Sekabira 
explained that, as the elected person to Parliament on behalf of disabled women, she was 
supposed to immediately focus on issues of disabled women but was not limited to that 
topic. She was also supposed to focus on national issues while always being vigilant to 
ensure that disabled women were considered in these other issues. 

 

Ugandan model 

 

The Ugandan model is perhaps the purest form of representative democracy of any of the 
models discussed. Not only are the MPs there specifically to speak for disabled people, 
but disabled people actually decide on just how they want to be represented in terms of 
types of disabilities, gender and geographical districts and are the only ones allowed to 
vote for their representatives. And while the disabled MPs do have national issues that 
they are responsible for, their role is clear�they are to watch out for and represent the 
interests of disabled Ugandans. On the other hand, as Sekabira points out, disabled 
Ugandans have a lot of clout because not only do they vote for their own disabled MPs, 
they also vote for other MPs in their communities where they live. As she says, 
�Disability awareness in Uganda really even impresses me. When it comes time to debate 
disability in Parliament, there's no 'who has a disability and who doesn't have it.' The 
MPs themselves get it because in their constituencies, disabled people come to them, they 
don't wait for us only, they also go to other Members of Parliament because they vote for 
them too.� 

 

Another variation on a theme... 

 

The two Scandinavians�Ann-Marit Saeb�nes of Norway and Bengt Lindqvist of 
Sweden�present yet another variation on the theme of people with disabilities in elected 
positions. However, it must be pointed out that each of them has held various leadership 
positions that were both elected and appointed and they have even gone back and forth 
between those two situations. For example, Lindqvist, who is perhaps best known for his 
most recent role as the previous United Nations Special Rapporteur for Disability, was, 
prior to that, a Member of the Swedish Parliament from Stockholm. In the middle of 
serving in Parliament, he was appointed the Minister for Health and Social Affairs, a post 
he held for six years, then was re-elected to Parliament. His second term would not have 
been up until 1998, but he left in 1996 to assume the U.N. Special Rapporteur position. In 
1991, Ann-Marit Saeb�nes was elected the Mayor of Oslo, Norway and served from 
January, 1992 until December 1995. After her party lost, she became the Chairperson of 
her party in the City Council. Currently she serves in an appointed position as Director 
General of the Child, Youth and Family Agency for Norway at the national level. Both 
Lindqvist, who is blind, and Saeb�nes who is missing limbs, came to their leadership 


roles from strong backgrounds in the disability movements of their respective countries. 
Lindqvist's successful chairing of a project in 1980 called the White Book that looked at 
the consequences of capping social expenditures got a lot of attention and was credited 
with helping the labor party come back into power in 1982. As a result, the party asked 
him to run for Parliament from Stockholm and he became the first disabled Minister in 
Sweden. Similarly, Saeb�nes was tapped to be the Norwegian labor party's nominee for 
Mayor, as a result of her prior work in the city as Ombudsperson on behalf of the users of 
social services. In both cases, their names were put forward on the ballot by their 
respective parties, not because they were disabled, but rather because they were well 
known candidates whose names would be recognized by many of the voters. In short, the 
skills they honed in leadership positions in their countries� disability movements 
provided them with the tools to deal with mainstream social issues and it was their 
demonstrated mastery of the latter that thrust them into public office. 

 

Appointed Officials 

 

As was the case for Bengt Lindqvist and Ann-Marit Saeb�nes, the national organizations 
of disabled people (DPO's) have also served as the incubators for the careers of many of 
the individuals interviewed for this report who are or were in appointed positions. 
Certainly, in many of the African examples, the leadership has been recruited directly 
from the ranks of the disability advocacy organizations. The reason is perhaps quite 
obvious; those with disabilities who were skilled in advocating and lobbying outside the 
government are in the best position to know how to work within the framework of the 
system to affect changes. Susan Chitimbe, who has a mobility impairment, was appointed 
as the Minister Responsible for Persons with Disabilities in the Office of the President of 
Malawi and is a case in point. She says, �Because I am in government now, I understand 
the problems of disabled people out there in society and I can take their concerns to the 
Parliament.� 

 

Moreover, in Malawi, it is not just that a few people with disabilities are appointed, but 
rather that the government has a very close working relationship with the disability 
organizations. As Chitimbe explains, �The policy we have now is the policy that has been 
written by non-governmental organizations, typically organizations of people with 
disabilities working with the civil society, and government officials.� To be clear, the 
individuals who ascend to leadership posts from disability organizations are recruited as 
much for their skills and expertise as well as for the fact that they are natural liaisons to 
the disability community. Therefore they bring to the job, their own educational skills 
and background; their firsthand knowledge of the issues; their credibility with the 
disability community; and, armed with that portfolio, they are likely to have significant 
clout with their non-disabled peers in government. 

 

Bert Massie, a lawyer, wheelchair user and long-term disability advocate was appointed 
the first Chair of the Disability Rights Commission (DRC) in the United Kingdom in 


2000. Before being selected for the DRC, he had spent years with the Royal Association 
of Disability and Rehabilitation (RADAR), where he had won a reputation as someone 
who lobbied hard for the rights of disabled people in the U.K. and who knew how to 
work with government to achieve his goals. Nevertheless, his selection was not simply a 
question of being appointed. Instead, it followed the required process as a public 
appointment. There was a stipulated open competition process involving civil servants 
and an external examiner to ensure that the civil servants were being fair. The top 
candidates' names were then sent forward to the Ministers who chose which of the three 
or so names they wished to appoint. In the case of the Chair, the selection also had to be 
approved by the Prime Minister, so Massie's appointment was essentially blessed by 
Tony Blair. 

 

Judy Heumann of the United States is perhaps one of the more fascinating examples of 
someone who came into a high level position in government from a position of an 
extreme outsider. Heumann, who contracted polio at 18 months of age, is widely 
recognized for being one of the founders of the Independent Living movement that has 
now become a worldwide movement. While still in New York, Heumann founded 
Disabled in Action in the early 1970s, one of the country's first disability political action 
groups, and then a few years later moved to California to help develop the newly-founded 
but already influential Center for Independent Living in Berkeley. 

 

In 1977, Heumann played a leadership role in arguably the seminal moment for disability 
rights in the United States. The issue concerned some little, almost unnoticed provisions, 
called Section 504. Tacked on the end of the Rehabilitation Act of 1973, Section 504 
made it illegal for any federal contractor, or any other institution or activity that received 
federal funding to discriminate against anyone �solely by reason of ...handicap.� At some 
point, the leadership of the U.S. disability community realized what a powerful tool for 
civil rights Section 504 could be. The problem was that the government, especially the 
then Department of Health, Education and Welfare (HEW) had been stalling in 
implementing the provisions and was even trying to draft new regulations that would 
have weakened them. Some disability activists called for and staged demonstrations 
around the country to protest and, in Washington, DC some protestors even chained 
themselves to the desk of the then Secretary of HEW. 

 

However, the most famous protest took place in San Francisco. Led by Heumann, about 
120 disabled demonstrators occupied the 4th floor of the regional HEW office for 25 
days. Initially deprived of food and all access to health, cleanliness support and 
telephones, they nevertheless held on. Their stories were picked up by the press, they 
gained supporters and sympathizers all over the country and eventually prevailed on all 
counts. Their story is now legend but it speaks volumes about the progress that the U.S. 
disability movement achieved in a mere 16 years. Proof of that progress is that one of the 
first disabled appointees tapped by the Clinton Administration in 1993 was Judy 
Heumann. From chaining themselves to the desk of the Secretary of Health Education 


and Welfare, people like Heumann were now occupying high level desks. As Assistant 
Secretary in the Office of Special Education and Rehabilitative Services, Heumann 
became one of the Secretary of Education's most trusted advisers and she used her 
personal experiences to fight continually to improve access and outcomes for children 
and youth with disabilities. Judy Heumann's experience in the U.S. Department of 
Education helped pave the way for her current position as Disability Advisor with the 
World Bank but she, like all of the others mentioned above, owes much to the advocacy 
skills honed from earlier days in the disability rights movement. 

 

II. AS LEADERS WITH DISABILITIES, WHAT HAVE BEEN THE SIMILARITIES OF 
EXPERIENCE? 

 

Does having a peer or colleague with a disability raise the consciousness level of non-
disabled politicians and bureaucrats? Do they gain appreciation of the abilities of their 
disabled colleagues as well as awareness of the challenges of having a disability from 
working with disabled leaders? At some point, do non-disabled politicians and peers 
become so comfortable with working with disabled colleagues than they no longer see 
the disability first, but rather the individual? Do disabled leaders gain acceptance as being 
knowledgeable about topics other than disability? This section will explore these 
questions through the perceptions of those in both elected and appointed positions. 

 

Impact on their Peers 

 

Effect on Non-disabled Colleagues 

 

All those interviewed for this study stated unequivocally that their presence has had 
significant impact in raising their non-disabled colleagues' personal awareness of the 
issues surrounding disability, but many indicated that it was a protracted struggle to get 
there. Several spoke about the initial difficulty as being one of credibility; i.e., not to be 
seen as having attained the office simply as a kind of compensation prize or a form of 
tokenism because of having a disability. Susan Daniels was appointed to her position 
initially as Associate Commissioner, then later as the Deputy Commissioner for the 
Office of Disability and Income Security Programs (ODISP) in the U.S. Social Security 
Administration (SSA) in the Clinton Administration. In the latter position, she had 
responsibility for the two largest programs of SSA, namely the old-age retirement 
program and the disability programs. Daniels, who is hemiplegic and uses a scooter as a 
result of contracting polio in infancy, holds a Ph.D. in rehabilitation. She talked about the 
reception she got when she reported for duty at SSA. �I think everyone was enormously 
uncomfortable with my disability, not only my subordinates, but my superiors and my 
colleagues, they were all pretty uncomfortable with the whole thing.� She felt that the 
discomfort level of her colleagues stemmed from not knowing how to address her 
disability or whether to address it at all. She stressed that they were all very kind, but 
very unaccustomed to dealing with a person with a disability, particularly a superior. She 


said she told them, �Don't worry about the disability-related stuff. I'll tell you when I 
want you to do something, and when I don't want you to do it, I'll also tell you and no 
hard feelings.� 

 

In addition, she felt that initially, at least, they regarded her appointment as a sort of 
tokenism. �I think, at first, they assumed all kinds of things because of the disability that 
weren't true such as I didn't have any idea about how the government was run. They 
seemed like they didn't know I had any knowledge at all about disability issues, even 
though everybody could see on my resume that I taught at a university for 15 years in the 
area of disability.� Further difficulties resulted when Daniels asked for certain work 
accommodations that were not on the agency's usual list of accommodations such as 
adapted computers, sign language interpreters or publications in Braille. Among the 
issues was her need, for medical reasons owing to the paralysis, to have an upgraded 
airline seat with more leg room and a footrest to elevate her legs and also to have an 
attendant fly with her when she traveled. Among her hassles was the bureaucratic red 
tape that required her to submit forms every 6 months from her doctor attesting to her 
continuing disability (acquired at 6 months of age). In addition, she also had to work to 
raise the awareness level of her superiors as to why she needed an attendant when she 
traveled when she did not require one in her daily office work. 

 

I think they thought they knew a lot about accommodating disabled 
employees�they had a self-image that they knew how to do it and 
that they had done a fabulous job. So when I went in and made 
demands that were not on their approved list of reasonable 
accommodations, it threw them. Secondly, I was a political 
appointee not a career employee, so that made it even harder for 
my superiors because they did not want any of the political people 
to be perceived as taking advantage of their jobs to get more perks 
than other people did. 

 

That concern meant that Daniels was not supposed to advocate for herself lest it appear 
that she was taking political privilege, a situation the she found �very difficult because 
she was in no position to criticize or do anything about it.� When the head of the agency 
changed, Daniels was finally able to use the occasion of the new Commissioner to put her 
accommodation needs on the table and to indicate that she would resign unless they were 
met. She was then given all the requested accommodations and was promoted to the rank 
of Deputy Commissioner. 

 

For Susan Daniels, the education of her non-disabled colleagues came with a great deal 
of difficulty that was probably exacerbated by their excessive concerns over perceptions 
of political impropriety. Nevertheless, some of the problems were also driven by her 
superiors' ignorance of disability conditions, coupled with mistrust of the motives. For 
example, the non-disabled superiors would have understood if Susan needed an attendant 


all the time during the workday, but they did not understand why she needed one only 
when she traveled. They had to be educated that she required an attendant when she 
traveled because she needed help to get dressed in the morning but once dressed, was 
able to function without an attendant at the office. Similarly, they were able to understand 
that her health required her to fly in an upgraded airline seat but, until it was explained to 
them that she needed help with eating, using the lavatory and so forth, did not understand 
why her attendant needed to sit with her in the upgraded section. All of these aspects 
demonstrate that one of the impacts of having a disabled person in a leadership role is 
really to educate the non-disabled to understand what having a disability entails on a day-
to-day basis. Moreover, working with disabled colleagues helps non-disabled people to 
grasp that each person with a disability is a unique individual whose needs cannot be 
categorized simply by the nature of the disability. 

 

Anne Begg's colleagues actually did the most intelligent thing to try to accommodate her 
when they learned it was likely that she would be elected to a seat in Parliament�they 
simply asked her what she needed. Begg describes being approached by the Chairman of 
the Ways and Means Committee in 1997 and being asked if it looked likely that she 
would win. When she said �yes� he asked her for a list of what she thought she might 
need so they could be prepared. �I guessed I would need an office quite close to the 
Chamber and to a handicapped accessible toilet. I knew I would need a comfortable chair 
that I could get my feet up in. I wrote it all down and sent it off. The first day after the 
election, I was shown into this wonderful, huge office that most MPs only dream about.� 

 

Similarly, Langevin reported that his election forced changes for individuals with 
disabilities to serve in the U. S. Congress. �There have been physical changes since I 
arrived here such as renovating my office, making some changes to the floor of the House 
of Representatives, adding a new speaker's lectern in the well and removing some seats 
on the floor. When I first spoke, I just used a lapel mike but then they changed to a 
lectern that raises and lowers so that I can get my feet underneath and speak right from 
the well like anyone else.� As the elections of Begg and Langevin demonstrated, 
typically the facilities have to scramble to create an accessible environment when 
someone with a disability is elected or appointed. This reactive rather than proactive 
mode can also be triggered by someone in office who is not disabled suddenly joining the 
ranks of the disabled, whether temporarily or permanently. Moses Masemene, the 
Minister of Justice in Lesotho who is blind was previously, in 1993, a Member of 
Parliament. He recounted how a chief who had been an MP became disabled in a car 
accident and was home recovering for the next session of Parliament. Masemene said: 

 

During this Parliament session, I advised the Senate to facilitate his 
attendance so they built a ramp to the Senate House. He now 
attends as a chief and although he is not in charge of disability 
questions, he is disabled. I think that had an impact on the 
Parliament because they had to make it accessible to him. With 


disability, social attitudes don't change fast but they do when it 
becomes necessary. 

 

Elected to the Swedish Parliament the first time in 1982, Bengt Lindqvist predated, by 
more than 20 years, the current group of disability leaders who benefit from today's 
technology. He commented that his presence contributed to making disability more 
visible in the political process. �I came with my white cane, every time we had a voting 
procedure, I came in, so everyone saw me, everyone reflected.� His peers and colleagues 
asked him how he managed to do his job, especially how he got his information a critical 
issue for blind individuals. In an era before the Internet and accessible websites, he was 
provided with two secretaries to assist him. They recorded a lot on tape for him and the 
important texts were produced in Braille. They also had bought him a scanner. �We had a 
colossal machine, it's now in the museum because the Parliament bought it for half a 
million crowns and it took two people to carry it. You know now a scanner is about 2,000 
Crowns and the size of a pack of cigarettes!� By the time he was reelected after serving 
in government for 6 years, the Parliament was completely computerized and he no longer 
needed the two extra secretaries that had constituted a 20 percent additional cost over 
those of other MPs. 

 

Comfort Level Issues 

 

As Susan Daniels pointed out, much of the adjustment problem she encountered with the 
non-disabled personnel at SSA stemmed not from malevolence or prejudice, but rather 
from unfamiliarity. Judy Heumann found very similar problems when she took up her 
position with the World Bank. She described being invited to a meeting of high level 
Bank personnel and being asked by the caller if she could come to the main building. At 
first, Heumann thought maybe she had a different building in mind but then quickly 
realized that the woman was concerned about Judy's ability to get to the meeting because 
she uses a wheelchair. 

 

I use that as an indicator of how people's lack of exposure to those 
of us who have disabilities is so significant that they are still 
continually thinking that they have to compensate by coming to me 
because I can't go across the street. In fact, of course, in my 
motorized chair, I can go any place anyone else can go provided 
there are no steps, but they don't see that. This person had actually 
seen me before but people cannot distinguish between those who 
might have difficulty getting across the street and those who can. 
When I first came to the Bank, I was going around to senior 
leadership and I realized that their schedulers would say that these 
vice presidents would come to my office. Having worked in the 
federal government, I understand pecking order and I knew that 
vice presidents don't come to advisors, advisors go to vice 


presidents. So I finally just said to my staff that I would not have 
them come to my office, I would go to theirs because they needed 
to see that I could get to their offices. 

 

Education of non-disabled peers is one thing, but for disabled leaders to become effective 
in their roles, they also found that they needed to establish a comfort level with their non-
disabled peers. Heumann tells the story of being in a senior staff meeting early on in her 
tenure at the Department of Education where one of the senior staff said that if they didn't 
do something, �they would be cut off at the knees.� Heumann, whose duties included 
administering the Rehabilitation Services Administration, quickly retorted, �Oh, and then 
you'll send them to me for rehabilitation services.� The person chairing the meeting 
became immediately embarrassed and said, �I'm so sorry, we're learning the appropriate 
language.� Heumann said she literally put her hands like a time out request, laughed and 
said, �I was joking.� She said it took some time however before the comfort level 
developed that fostered progressive dialogue. �It took a while before people outside my 
office really accepted me for who I was and could listen to what I had to say in an equal 
way and agree or disagree based on substance, and not based on their feelings about how 
they would affect me.� 

 

Cultural Prejudices 

 

The comfort level issue is also sometimes closely linked to cultural prejudices. For 
example, Wilma Newhoudt-Druchen explained that when she first entered the South 
African Parliament, other MPs did not speak to her because they didn't know how to 
approach a deaf person, but after awhile they would come up to her and ask her 
questions. 

 

They would come to me and ask me certain signs and so they 
became more aware of deaf issues and sign language. Many of the 
black MPs�because the black culture does not accept disabilities 
very easily�when they go to their constituencies, they meet 
parents or other disabled people and now they have become more 
aware. Some of the MPs� family members are disabled and now 
they will tell me about them and are proud of the fact. They will 
tell me about their brother's child who is deaf or blind or disabled 
in some way. 

 

Florence Nayiga Sekabira of Uganda also talked about how her presence in her prior 
position as an MP and currently as the Minister of State for Elderly and Disabled Affairs 
has helped change cultural biases toward disabled people. 

 

In our local language, whenever someone saw a disabled person, 
they would say that person is a �cata yamba� meaning someone 


who is helpless. Now because many disabled people are serving on 
local government councils, the term has also come to mean 
�councilor.� So the public had to change the language because 
when they meet a person with a disability, they no longer know 
whether they are talking to a councilor or any other person. When I 
was elected as an MP in 1996, an education officer in the Ministry 
where I work today was addressing some government people about 
the need to change this �helpless people� term. He pointed out that 
as an MP, I would be entitled to a vehicle and if I came upon one 
of them stranded on the road and gave them a lift, how would they 
be able to explain that their rescue was dependent upon a helpless 
person? 

 

Impact on the Public 

 

Role Models 

 

When asked about what they thought the impact was of their being in high level 
positions, many of those interviewed were quick to mention the satisfaction they receive 
from knowing that they are serving as role models to adults and children with disabilities. 
Whether from developing or industrialized countries, the comments on this issue were 
almost identical. For example, Florence Nayiga Sekabira of Uganda said, 

 

We're acting as role models to many�to the young people with 
disabilities and other disabled people and even to parents who have 
children with disabilities. It gives them the knowledge that having 
a child with a disability is not a curse as it used to be thought. 
Instead, that if their child's potential is developed, she can 
contribute to the family and to the nation at large. 

 

Anne Begg of Scotland said about being an MP, 

 

It breaks the taboo that if you got a disability, you can't handle a 
high pressure job like serving in Parliament. My constituency is 
over 500 miles away from Westminster, so I'm flying up and down 
every week. So if someone with my kind of physical impairment 
can still lead an incredibly busy life, it shows that it can be done 
and it's up to other people with disabilities to come in and do it. 

 

Begg's comments were almost identically echoed by Rep. Langevin's of the U.S., 

 

I would hope that my election to Congress has served to inspire 
and motivate other disabled people to serve in government, to 


know that they can achieve an election to office or any other goal 
or desire they have to work in any field. I like to believe that many 
of the lives that I touch, although I may never even meet these 
people, maybe just seeing me doing what I'm doing will hopefully 
help them know they can do the same thing. 

 

Spokespersons for the cause 

 

One aspect that the study's leaders encountered across the board was that they were soon 
sought out by their non-disabled peers for their expertise in disability. For those whose 
election or appointment was, in fact, expressly to represent those interests, such as some 
of the Africans, that role was understandable and appropriate. However, some like 
Charlotte McClain-Nhlapo went even further to ensure that disability issues had a voice. 
McClain-Nhlapo, is a lawyer, currently Commissioner responsible for children's rights 
and disability rights on the Human Rights Commission of South Africa and is a 
wheelchair user. She explained that when she first came to the Human Rights Office, 
there was a person with a disability who had been appointed through a process of 
disabled people putting his name forward and he then became the Commissioner for 
disability issues. 

 

I came in on the issue of child rights but obviously even in that 
regard, the issues that were of concern to me were those relating to 
the rights of children with disabilities. So for me it was very 
important to have somebody in my office who was responsible for 
disability issues and who was disabled, but also, at that level of 
rights issues, to be able to introduce the disability perspective to it. 
I think it is important to have a person who is disabled in a position 
like that and not to have a non-disabled person talking about 
disability rights. That way, you have somebody there who can 
motivate for disability issues at the level of developing policy on a 
cross-cutting basis. 

 

However, for those whose elections were not related to representation of disability issues, 
the situation was far more complex and their personal reactions to that role, more 
conflicted. For example, as mentioned above, both Rep. Langevin of the U.S. and the 
U.K.'s MP, Anne Begg, were eager not to be seen as spokespersons for disabled people. 
However, after assuming their duties they realized that, as essentially the sole persons 
with disabilities in their positions of governance, they had an almost moral responsibility 
to weigh in on disability issues. As Langevin says, �Certainly when I speak on disability 
legislation, I have credibility on the issue. I live disabilities, I grew up with a disability, 
so therefore I can convey not just what I think about it, but also my experience on the 
issue to my colleagues.� Begg echoed those sentiments. �The longer I was an MP, the 
more I realized that I obviously had an expertise and a knowledge that many others didn't 


have and that I would be doing a disservice to large numbers of people if I didn't speak 
out from my own experience.� Ann-Marit Saeb�nes' initial viewpoint about her disability 
differed from Langevin's and Begg's. Because her disability is less obvious, she describes 
how she deliberately brought it up. 

 

When I was elected Mayor and even when I was running for 
office, I had a lot of interviews. I talked very freely about my 
disability because I think it is important to do so. Many people 
don't realize that I am disabled when they see me because I can 
walk fairly well with my leg, and people do not see my hand at 
first. So in interviews, I talked about what it was like to grow up 
with a disability, what kind of troubles it caused and what can be 
expected from society. So I never tried to hide it, on the contrary, I 
used it actively. 

 

All three of these elected officials reported that once they took on the issue of speaking 
for disability issues, they have usually been very successful with their colleagues. As 
Saeb�nes said, �The effect my disability had in the City Council was that when I went to 
the Chair or made a speech and said we are suggesting this or that, it was very difficult 
for the other parties to reject it.� 

 

III. WHAT HAS BEEN THE EFFECT ON POLICY AND LEGISLATION? 

 

The core question of this study is whether having people with disabilities in high 
leadership positions really makes any difference? Do policies change; do governments 
develop a �conscience� about what it means to be disabled? Perhaps, more importantly, 
do politicians and other non-disabled peers gain an understanding and awareness so that 
all proposed programs and policies eventually are screened through a disability lens? This 
section begins with the disability lens question because, as Judy Heumann points out, 
disabled people cannot do it all�they must educate and make advocates of their non-
disabled peers. The second aspect that this section will examine in some depth is how 
disability advocacy is structured within the framework of advising or informing the 
government on disability policy issues. In exploring this question, the report will move 
from a micro to a more macro perspective. The individuals interviewed are, for the most 
part, not the ones already mentioned in this report but instead were selected as 
spokespersons for their organizations. Therefore, they were asked not so much about their 
experiences from a personal perspective, but rather about the structure of their 
organizations, how these interact with government, the role that they play and what 
quantifiable outcomes have been achieved. 

 

Advocating for a Disability Lens 

 


One of the paradoxes mentioned by some of the leaders in this study was that, at a certain 
point, having earned the support and trust of their non-disabled peers, the latter tended to 
want to �dump� anything seen as a �disability problem� on them and they had to educate 
and persuade them to take responsibility. For example, Bengt Lindqvist described a fairly 
common situation he encountered as an MP, 

 

There's no doubt than my colleagues in the government�there 
were 22 Ministers�very often came to me because they knew I 
was a disability advocate and said, 'Well, this is a disability issue, 
this must be yours.' I would have to answer, 'No, it's an education 
issue but it happens to be a concern for some people with 
disabilities, but it's your portfolio.' Sometimes I had to fight to 
make them take their responsibility and I think that was an 
education process between us because they wanted to give it all to 
me... so there was a learning curve. 

 

Judy Heumann made a similar point concerning her efforts at the World Bank. 

 

I think what's also important is that we get other people who may 
or may not be affected by disability to argue our points and I think 
that's where we gain legitimacy...Everything should be perceived 
of as needing a disability lens. In the end we may not prioritize that 
we can do everything, but any office of the Bank needs to ask if 
disability is a component of the work we could be doing here. I 
recently met with infrastructure people on a series of issues that 
they are dealing with. Maybe one of the issues didn't really 
concern disability�building dams or something like that�but of 
the six issues, five are related to disability. If you cannot do all five 
at once, then let's start with one or two so that people get a better 
understanding of what we mean when we say �to include a 
disability lens� so they begin to learn by experience what to do. So 
things are slowly beginning to happen that way here. For example, 
I was at a meeting where they were laying out an agenda and 
somebody asked 'where was disability?' and I almost fell out of my 
chair. I'm actually pleasantly surprised given the few disabled 
people who are here at the Bank, that disability is not always being 
looked at only because of our instigation. 

 

Charlotte McClain Nhlapo also commented about the need not to always be the only one 
carrying the water for the disability cause. 

 

 


Not too long ago there was a big conference on disability and the 
right to work and employment. I particularly thought it was not a 
good idea for me to go to that. I asked one of my colleagues to do 
it because I want the other Commissioners also to get an 
understanding of the issues that we are dealing with, so that when 
they talk about equality, they too can talk about disability and not 
necessarily to have me there to do that. 

 

Differing Structures for Advocacy 

 

Increasingly around the world, politicians and therefore governments have begun to 
recognize and respond to the issues surrounding disability. Whether because of the efforts 
of disability advocacy groups, or in response to economic pressures stemming from 
swelling disability pension rolls or because of human rights concerns, whatever the 
reason, many governments have taken steps to try to address the myriad issues through 
specific disability policy initiatives. One rather common response of several countries in 
the last 5�10 years has been to create offices specifically responsible for disability issues 
across the board or for the related human rights aspects of disability. For example, among 
the countries in this report, Mexico and South Africa have both established specific 
disability offices in recent years. The other general model used by governments to inform 
the disability debate is through the use of advisory bodies that typically are independent 
of government and often represent a cross-section of disabilities. These latter bodies may 
be an actual federation of disability organizations or, instead, may simply be an ersatz 
umbrella organization in that it has no actual members but nevertheless does speak for all 
disability concerns. As has been mentioned briefly in an earlier section, in some 
countries, legal protections concerning human rights issues for people with disabilities 
are ensured through specific authorities established for that purpose. Finally, some 
countries such as Malawi and Uganda have elevated previously elected MPs to the status 
of Ministers specifically for disability issues. The sections that follow will examine in 
more depth how these different models function. 

 

The Specific Disability Office Model 

 

Sebenzile Matsebula, who is the Director of the Office of the Status of Disabled People in 
the office of the President of South Africa and a wheelchair user, mentioned that South 
Africa was the first country to have such an office at the executive level. �Since then 
Mexico is the other country that has a similar structure and more recently, Namibia has 
adopted a similar model in the office of the Prime Minister.� Matsebula explains that the 
functions of the office are �to coordinate, facilitate, monitor and evaluate programs that 
serve or are designed to integrate disability into mainstream society.� The office does not 
deliver services or propose legislation�the former are the responsibility of each Ministry 
or governmental department and the latter that of the Parliament. Instead, �our role is to 
make sure that what is supposed to happen actually does happen. In a sense it's like a 


policing body.� She explained that the positioning of the unit in the office of the 
President was deliberate. 

 

A Minister that gets a direction from the President on a particular 
issue on which he is not serving or performing, will certainly be 
forced to comply. Otherwise, if every Minister was left to do 
whatever he wanted, there's always a reason (sometimes a 
legitimate, valid reason) why they cannot do it. But in this case, it's 
set up to ensure that what the government sets as policy about 
integrating disability into mainstream society does actually happen. 

 

The goal of overall coordination is also mentioned by Victor Hugo Flores as the rationale 
for the structure of the office in Mexico. Flores, who uses a wheelchair, is head of the 
Office of Representation for the Promotion and Social Integration for Persons with 
Disabilities said the creation of the office was the specific desire of President Vincente 
Fox. Fox initially asked the heads of 16 different offices that he created to coordinate 
policies over specific issues to develop a master plan on what they were going to do, how 
they were going to do it and with whom. There are weekly cabinet meetings with the 
Ministers and the coordinating offices. �Our office that coordinates public policy towards 
disabled people asked in one of these meetings that each ministry develop one specific 
program including or focusing on disabled people.� 

 

Flores's office in turn created a National Council on Disabilities that includes the five 
main Ministries where disability issues would figure most prominently, i.e., Education, 
Communication and Transport, Labor, Social Affairs and Health. Each Minister assigns a 
Vice Minister who is responsible for operation of this National Council. In both the South 
African and Mexican examples, it is clear that placing the disability office in the office of 
the President was intended to send a signal to all Ministers that disability was a top level 
priority and that coordination and cooperation around these issues was a requirement. 
However, in addition to the idea that each MP knows that he or she is supposed to be 
thinking about disability and therefore to be promoting a mainstream agenda, 

 

Matsebula describes an additional �insurance policy� aspect to the South African 
approach of also having Members of Parliament who are themselves disabled. �The 
whole idea of having Parliamentarians with disabilities is because they experience 
disabilities. So someone without a disability might want to say �ok, we have to ensure 
that disability is part and parcel of this particular legislation but because they are not 
disabled they may not necessarily want to make sure that that particular piece of 
legislation actually goes through.� 

 

Independent Advisory Bodies 

 


In the United States, the National Council on Disability (NCD) is an independent Federal 
Government agency tasked with advising the Administration and Members of Congress 
on all matters related to disability policy. Initially created in 1978 as a council of 
Presidential appointees to advise the President, it was located administratively within the 
Department of Education. It was so ineffective that by 1983, when hearings were held to 
consider its reauthorization, most of the disability community and many others, including 
Lex Frieden, recommended ending it. Instead, they recommended a Blue Ribbon panel to 
advise the President on disability issues. The Congress took both suggestions, combined 
them and made the Council a small, independent agency, (with a current budget of about 
$3 million), so that it had the freedom outside of the Administration to give advice and 
publish findings and advice. Frieden, who became the Executive Director for the Staff at 
NCD through the 1980s, currently serves as Chair of the Council whose members are 
appointed by the White House and which reflect the majority party. The Council sets the 
priorities and goals that NCD will follow and staff carries out their directives. Frieden is 
quadriplegic and the Council's 13 members are either persons with disabilities (typically 
well-known advocates), professional working in the field or parents of disabled children. 
In addition, it is commonplace that the Council members also reflect diversity in gender, 
ethnic background and types of disability. Frieden remarked that though NCD has no 
formal or legislative obligations to consult with disability groups or provider groups, in 
reality, it does just that. 

 

NCD has always done an exceptional job of involving and working 
with and consulting with the disability NGOs, probably not a very 
good job always of consulting with provider organizations and 
some others but by its very nature and history, has had a bias 
towards a consumer viewpoint. The job of the Council is to make 
recommendations on disability policy to the President and the 
Congress. Those recommendations are only as good as they are 
valid and they are only valid if they are substantiated by good data, 
by good rationale. In order to get those data and that rationale, you 
have to do consultation wit the community, you have to study the 
literature and you have to synthesize all of that. 

 

In Norway, Lars �deg�rd is Secretary General of the Norwegian Association of the 
Disabled (NAD) which is not an umbrella organization but rather a member-based DPO 
with 12 affiliated organizations. �In Norway, with a population of 4.5 million, we have 
this nearly ridiculous situation where we have 115 different, separate organizations for 
disabled people in this small country. So we decided 15 or 20 years ago that within NAD 
we would have affiliated disability-based organizations within our organization. Our 
main structure is through local branches�we have approximately 360 local branches 
organized through 19 regions and a national body that contains this structure and the 12 
affiliated organizations and a youth organization as well.� 

 


Given what a small country Norway is, NAD's size and scope is even more remarkable in 
that it does not even include mental disabilities. One of the 12 affiliates does represent a 
parent's association where many of the children have multiple disabilities, but essentially 
NAD is an organization for physically disabled persons only, probably owing to the fact 
that the organization is 73 years old. NAD works with the Norwegian Government 
through the governmentally-appointed Council on Disability which is supposed to advise 
the government on disability issues. The different ministries request advice from the 
Council but, in addition, the Council can also raise issues it wants addressed. However, 
�deg�rd, who is a wheelchair user, stressed that the main lobbying work is done alone, 
not through the Council. They may be asked by the government to be part of a committee 
to create a basic document for a Governmental White Paper for Parliament but then, they 
will also prepare their own paper on whatever the issue is and then lobby for it within the 
Parliament and within every Ministry that deals with disability issues. The organization 
has its own journalist and is working to raise awareness through the media on issues that 
they are eager to focus on within the Ministries or the Parliament. 

 

NAD, which has 70 full-time employees, raises about 80 percent of its operating budget 
through its own income-generating project. Another 5 percent is from membership fees 
and the remaining 15 percent is from government. Their main source of income is 
through running a national lottery but they did not tell people that they were behind it for 
fear of creating a charity approach. They also had slot machines but the government will 
take them over and the organization will have to find new ways to cover the shortfall. In 
addition to its domestic lobbying and advocacy, NAD is also heavily involved in 
international development work as part of an alliance with other disability organizations. 

 

Disability Rights 

 

Some of the countries have established specific authorities to deal with disability rights 
issues. As mentioned, Bert Massie was appointed the first Chair of the Disability Rights 
Commission (DRC) in the United Kingdom when it was established in 2000. The DRC, a 
by-product of the Disability Discrimination Act (DDA), has a great deal of authority to 
persuade and induce as well as enforcement powers but only on civil rights legislation, 
not on human rights law. According to Massie, 

 

This lack of enforcement power has made it difficult for us in 
representing people in health services because in civil rights, like 
access to shops, restaurants, employment issues, you can find a 
comparator. You can say had this person not been disabled, s/he 
would be treated in one way but because s/he is disabled, they're 
treated in an alternative way which is less favorable. As that breaks 
the law, you can bring enforcement powers to bear through the 
courts, tribunals, and also formal investigations. We have dormant 
powers on human rights which the government has gone ahead and 


introduced�it's in the Act but the Minister has refused to sign off 
on it. So that makes it very difficult to take cases in the health 
services when you are talking about people's right to dignity 
because in many cases, the health services do treat people with 
appalling indignity and arrogance. While it's not the everyday 
experience, it happens sufficiently frequently. 

 

Massie said the DRC will next formally investigate how the health service treats people 
with learning disabilities, who, he says, tend to die much younger than other people. As 
Massie describes it, too often people with intellectual disabilities are ignored or 
mistrusted by doctors when, for example, they allege having pain. The tendency is to 
assume the allegation of pain is psychological just as the allegations of pain by people 
with mental illness tend to be dismissed as having an emotional cause. While the DRC 
can investigate these types of issues, it has no authority to bring legal cases because of 
not having human rights powers. 

 

Nevertheless, the DRC has been quite effective in the civil rights realm where it has 
advocated successfully against employment discrimination and more recently has been 
instrumental in public access issues for example in pushing for more accessible transport 
such as the new taxis in London. However, new plans to amalgamate the DRC into one 
larger Commission that is supposed to have oversight over all discrimination issues 
leaves many disability advocates quite concerned about whether their issues will get lost 
in the shuffle. 

 

According to Massie, �We're going to have one major commission, that they think will 
start around 2007, that will amalgamate the current Commission for Educational 
Equality, the Equal Opportunities Committee, a commission which deals with gender 
issues and the DRC and will also expand the role to cover age, sexual orientation and 
religion.� Massie said that the original proposals were not well-thought out at all and 
would not have worked. Essentially, the government wanted to put everything together 
and put one person over it, based on an argument that there was no longer any need for 
disabled Commissioners since everyone was fighting for a common cause. 

 

The problem with that view is that for most discriminated groups, 
they're fighting the attitudes or behavior of the people, but disabled 
people are also fighting the whole environment and it's much 
different. One of the debates has been that disabled people have 
multiple identities�they're disabled, they're Jewish, they're Black, 
they're Gay or Lesbian. I said, 'No, people don't have multiple 
identities, they have many facets to one identity. If you can't go 
down steps because there's no lift or elevator, then it doesn't matter 
if you're a Muslim or Hindu.' The solutions are not simply about 
being nice to people�many who try to be nice to disabled people 


will still get it fundamentally wrong. So we objected and said 
disabled people had to keep control of the disability agenda. 

 

Massie and the DRC lobbied and campaigned and made their case successfully. The new 
body will have, guaranteed in law, at least one disabled Commissioner. It will also have a 
committee, of which half the members must be people with disabilities that will deal with 
disability policy as a new organization. Massie and the DRC are still working to ensure 
that the disability unit will be properly resourced and staffed but they have successfully 
made the case that discrimination concerning disability requires unique approaches and 
solutions involving the expertise and experience of disabled people themselves. 

 

Human rights 

 

As mentioned, in South Africa, Charlotte McClain Nhlapo's portfolio as a Commissioner 
on the Human Rights Commission includes disability issues as well as children. 
According to her, people are beginning to introduce disability almost automatically 
because almost from the beginning of the Commission, there was somebody with a 
disability at the Commissioner level. The Commission sends out protocols to all the 
government commissions to find out what progress is being made in terms of the rights 
that are contained in the South African Bill of Rights and they specifically ask questions 
about vulnerability and vulnerable groups. One of the Commission's functions is to 
advise government on legislation whether actively to suggest new legislation where there 
are gaps or reactively to comment on bills. McClain-Nhlapo said that generally the 
Ministries are well-attuned to disability and issues of access and human rights and she 
attributes that to the fact that South Africa has an integrated disability strategy. However, 
the weakness according to her is that while the governmental policies may indeed address 
the issues of disability, in actual practice, it has been very different. The Commission has 
a component of legal services that can receive complaints from any legal entity or from 
the public on all issues related to the Constitutional mandate that would include 
disability. However, in actuality, very few complaints are lodged. As she said, 

 

I must say I have been disappointed in that regard because we have 
had very few complaints related to disability discrimination. I can 
understand why historically. You are looking at a segment of 
society that has been excluded, that hasn't really had a voice and 
therefore, is not really aware of what is out there even within the 
new dispensation. So people don't use the systems that are in place. 

 

She explains that disabled South Africans either do not know that the system is in place 
or do not know how to access it. So, on the one hand, she feels the Commissioner should 
do more to raise awareness among disabled people about their rights, but on the other 
hand, she fears raising expectations beyond the abilities of the Commission. The 
Commission does have the authority to take someone to court and can take punitive 


action, although is yet to do so, but does not have civil authority to sue for monetary 
damages, for example. 

 

Moses Masemene who is the Minister of Justice in Lesotho reflected on the impact he has 
had. �When I first came to Parliament in 1993, it was �How did this blind man wind up in 
Parliament?� But with time I became a force, I compelled them to dialogue, I engaged 
them in discussion so that attitudes of MPs toward disabilities have been transformed.� In 
his current role, he describes himself as being a sort of nexus between the disability 
movement and Parliament/government. While Lesotho has not yet reached the point of 
having a dedicated office on disability rights or specific laws, his office can and does 
propose amendments to certain sections of laws. He mentioned as examples, building 
control laws about accessibility and adding a section to a law on sexual offensives that 
specifies protection of disabled people from rape. 

 

IV. MEASURABLE PROGRESS 

 

It would seem that the disabled leaders interviewed for this report universally agree that 
their presence has had a positive impact on the attitudes of their non-disabled colleagues 
as well as on the general public. However, the last area to be explored is whether it has 
also produced any tangible outcomes as far as policies or programs to benefit people with 
disabilities? The disabled leaders were asked to name what they considered to be specific 
positive outcomes of their being in positions of governance. What follows are some 
selected responses that are exemplary but by no means comprehensive. Readers should 
refer to the complete interviews elsewhere in this report for further examples and more 
details. 

 

Ann-Marit Saeb�nes cited one of the last things she did, not as Mayor of Oslo, but rather 
as the opposition leader before leaving the City Council. �I suggested that all the things 
that the City Council buys should be adapted so that they could be used by disabled 
people so that they would not be discriminated against or excluded. To be honest, I'm not 
sure the Council knew what they were doing, but they voted for it. So it's there.� 

 

Congressman James Langevin pointed to two specific pieces of legislation where he felt 
his leadership position was influential. The Help America Vote Act ensures physical 
accessibility to the polling places as well as the availability of accessible equipment at the 
polls. Secondly, the Foreign Appropriations law in 2004 added new language requiring 
that any time U.S. foreign assistance funds are used overseas, they must be used in a way 
that is beneficial to people with disabilities. Specifically, any new construction must be 
done in a way that is accessible and any reconstruction to the degree possible and all 
programmatic funds must promote inclusion of people with disabilities. Moreover, the 
Department of State must produce written reports annually on how well they are doing at 
meeting these goals. This language marked the first time such goals were part of any 


foreign appropriations requirements and Rep. Langevin's efforts helped gain the 
necessary support needed in the House of Representatives. 

 

Within the National Council on Disabilities (NCD) that he helped create in Mexico, 
Victor Hugo Flores was able to develop seven different programs that did not exist before 
by working with the appropriate Ministries. In essence, the NCD serves as a sort of 
clearing house and spur to the Ministries by finding out what disabled people need, then 
working with the Ministry to help develop the specific programs. One was a program for 
prevention and rehabilitation inside the Ministry of Health for all the national health 
system. Flores explained that the health system in Mexico is actually composed of the 
health systems of five main institutions: the Social Security Mexican Institute; Social 
Security for State Workers (i.e. federal government workers); Mexican Petroleum 
(PEMEX); the Navy; and the Army. Their initiative created an awareness program 
among doctors to prevent disabilities as well as a program to ensure that hospitals are 
accessible. The last program created within the framework of the National Council was 
presented in September of 2003 and is a rural area program to support persons with 
disabilities. It involved a change in the law for the ministry that is responsible for all the 
rural and agricultural areas. The Mexican Congress assigned $250 million to this specific 
program to provide training and technical support including technical assistance for 
projects and for the purchase of equipment. The training is in entrepreneurship, to 
encourage disabled people in the rural areas to develop their own small businesses. The 
applicants submit proposals for what they would like to do, for example to grow 
mushrooms, and then the program pays to train them in both the technical requirements 
of growing mushrooms as well as the business aspects of micro-enterprise. 

 

In her position as Deputy Commissioner at the Social Security Administration, Susan 
Daniels was able to influence two very key pieces of legislation benefiting people with 
disabilities. Arguably the most extensive and well-known is the Ticket to Work and Work 
Incentives Improvement Act or what is sometimes simply referred to as the Ticket. 
Daniels said she had a specific strategy in mind when she started at SSA and it was 
simply, �I cannot be the problem, I have to be the solution. I never told anybody at SSA 
that they were going about things wrong, what I did was make SSA hear it from other 
people. I amplified the voices of disability constituents.� Daniels sponsored numerous 
forums so that the voices of consumers, i.e. people with disabilities and especially those 
on benefits, could articulate to the agency exactly what the barriers were to working or 
returning to work after acquiring a disability. One of the many issues was the lack of 
consumer choice. Prior to the advent of the Ticket, the only possibility a disabled 
beneficiary who wanted to try working had was the State Vocational Rehabilitation (VR) 
system. However, VR is very selective in who it serves, there are often long waits for 
service and in general, it had a very poor track record for helping SSA disability 
beneficiaries with their employment goals. The Ticket created financial incentives for 
private sector providers to get into the business of rehabilitation. In doing so, it also 
shifted the control to the hands of disabled people themselves because, rather than being 


the passive recipients of services, instead, as holders of a Ticket which is a kind of 
voucher, they decide if they want to use or not, when they want to try using it and with 
whom. The provisions of the Ticket are too complex to discuss here but suffice it to say 
that it was landmark legislation that has been rolled out over the entire United States. 
While there are still problems with it, it is a work in progress that is innovative in the way 
it attempts to resolve many longstanding barriers to work or return to work by disability 
beneficiaries. 

 

Daniels' other policy success was in some ways even more remarkable because it came in 
under the radar but succeeded in accomplishing a long-desired goal of disability 
advocates. The test of ability to work by SSA disability beneficiaries is called Substantial 
Gainful Activity (SGA) and was essentially a very low monetary amount per month that 
bore no relationship to any other measure or index such as the minimum wage. Worse 
yet, it was not adjusted based on changes in other measures, but rather was adjusted on an 
ad hoc basis which resulted in sometimes 8 to 10 years between adjustments. Finally and 
perhaps most unfairly, blind beneficiaries did have their SGA updated on a constant basis 
resulting in great disparities over the years between what a blind disability beneficiary 
could earn versus what a non-blind beneficiary was allowed. Hence, disability advocates 
argued that it was actually a disincentive to attempting real work because it was set so 
low, that earnings under that amount were of little value to being self-supporting. For 
years, advocates urged that it be adjusted on a regular basis and that the adjustment be 
linked to a real measure. However, it took Susan Daniels, with the blessing of SSA's 
Commissioner, to engineer the change in 2001 that resulted in the non-blind SGA being 
automatically adjusted based on increases in the national wage index. Again, Daniels 
encouraged the disability community to advocate for themselves on this issue. She alerted 
them to the fact that a request for comments was published in the Federal Register. She 
got the notice for comment posted in every disability location. 

 

I went around giving people labels that had SSA's address on it. I 
told them, if you don't think this is right, just put it on a postcard in 
one sentence and then mail it to SSA. We got 3,500 responses, 
seven or eight is common, 200 for a really big regulation, but we 
got 3,500. I said, we need to have an uproar for the Commissioner 
to walk into the Office of Management and Budget and get them to 
sign off on this regulation, so we created one for him. He loved it 
because we were amplifying the voice of the disability community 
and helping to organize it in a way that it could be heard. 

 

Florence Nayiga Sekabira believes that she and the other four Members of the Ugandan 
Parliament who have disabilities has helped shape disability-friendly policies. Now as 
Minister of State for Elderly and Disabled Affairs, she sits in the Cabinet where she 
credits the system �whereby whatever goes through Cabinet is supposed to be disability 
sensitive. Then Parliament will look at what the Cabinet has provided and if they wish to 


improve on it, then they do so.� Sekabira explained how this system has resulted in 
access to education for disabled children: 

 

In the case of universal primary education, that's a program created 
to ensure that every child below age 18 has the opportunity to go to 
school. Government meets the tuition, the parents have to provide 
only school fees and money to feed their children and also to buy 
books. We help to ensure that children with disabilities are 
provided for because when this program was initially established, 
it was to pertain to only four children per family. Those would go 
to school for free, i.e., without paying tuition fees. We insisted that 
in a family where they have children with disabilities, they should 
be given priority among the four. So we helped establish that 
policy. 

 

V. CONCLUDING REMARKS 

 

The presence of individuals with disabilities is clearly having an impact around the world 
in many different ways. Non-disabled leaders are learning about the issues from people 
who have lived the experience. In that process, non-disabled politically involved 
individuals are also becoming aware of the competencies of disabled people and are 
learning not first to see the deficit but rather to appreciate the abilities of their disabled 
peers. Thus slowly but surely, non-disabled politicians and bureaucrats are learning to ask 
the right questions and to scrutinize new policies and programs through a disability lens. 
As leaders, people with disabilities also acknowledge their position as role models for 
millions of disabled children youth and adults who can aspire to similar or even greater 
goals. 

 

Finally, it is possible to point to many concrete pieces of legislation and new policies as a 
direct result of having disabled people in position of leadership. The problem is that thus 
far, there are simply not nearly enough disabled leaders around the world or in any given 
country. Until now, those disabled leaders who have gained positions of governance are 
still rarities�the odd exception rather than something commonplace. If one looks at the 
general experiences of women or minorities who have attained leadership in political or 
corporate circles around the globe, it is likely to be quite some time before individuals are 
simply leaders with disabilities rather than disabled leaders, but it is certainly a goal very 
much worth pursuing. In the interim, as Judy Heumann suggests, �it helps to gain 
legitimacy when disability issues are argued not just by disabled people, but by those 
who may or may not be affected by disability because, then these issues become more 
mainstream.� 

 

 


* This article originally appeared in DisabilityWorld 24 (2004), 

http://www.disabilityworld.org/06-08_04/gov/interviews.shtml 

 
�We have more responsibility to the cause:� 
an interview with Moses Masemene, 
Minister of Justice, Lesotho *

 

By Ilene Zeitzer, conducted during the 
Rehabilitation International African Regional Congress 
in Durban, South Africa, October 2003 

 

 

 

 

 

 

Q. What do you think has been the impact of having a person like yourself in a high 
office? Do you feel you are advancing the agenda of people with disabilities? 

 

A. I think the impact is that while representation is not as great�there is only one in the 
Parliament now�whereas initially in 1983 it was about 150, nevertheless, I think the 
impact is that by lobbying, we were able to put forward amendments to incorporate 
disability issues in places like education, building control, sexual offenses, and criminal 
procedures legislation. Those amendments required efforts to convince MPs to do that. In 
the beginning, when I first came in 1993 it was like, �how did this blind man wind up in 
Parliament?� But with time, because I also became a force, I compelled them to dialogue, 
I engaged them in discussion, and the attitudes of MPs toward disability have been 
transformed. 

 

As you know, MPs come and go, just like in offices of government, but when you 
transition to a new one it doesn't mean you are going to start all over again. So in the 
same manner, as new MPs came, they became like the old MPs because I have been 
sitting since 1993. So my presence became a way of sensitizing them. When you are a 
disabled minister, it's more elevated because you are in the decision-making role on the 
issues of policy and legislation in disability policy, so you have more responsibility to the 
cause. I do think there's an impact but I think there's more to be done. The massive task is 
to ensure that the whole government integrates disability in all its activities. We also need 
to strengthen the movement itself so that we can also continue the lobbying because the 


role has changed. My role has changed, I'm sort of a nexus between the movement and 
Parliament/goverment. But as I said we need to keep up the movement and continue with 
lobbying because we need more voices dealing with these issues. 

 

Q. Are there now currently other members of parliament with disabilities in Lesotho? 

 

A. There's only one chief who got disabled in a car accident in his village. For the last 
Parliament he was at home. During this Parliament, I advised the Senate to facilitate his 
attendance so they built a ramp to the Senate house so he now attends as a chief. 
Furthermore, he is not in charge of disability questions, but he is disabled. So I think that 
had an impact on the Parliament because they had to make it accessible to him. They had 
to provide him a table so that he could write. With disability, social attitudes don't change 
fast but they do when it becomes necessary. 

 

Q. Are there specific laws in your country with regard to disabled people? 

 

A. As I indicated before, we are able to make an amendment to certain sections of laws, 
like building control laws, about accessibility. There are also laws regarding sexual 
offensives�for protection of disabled people from rape, etc. There are now laws like 
this. 

 

Q. What about employment accommodations, etc.? 

 

A. At the moment there are no labor laws per se, there's no law like this. But we want that 
policy for disability, also convention laws on disability. But we will have to wait years to 
accommodate disability. But I've been communicating with the ministers in force. They 
will support the laws when they come through my chamber�all the laws of government. 
So it can be an envious position. I can advise and even more so in my way, inform, 
mostly about disability legislation because most of them want to be informed and 
updated. 

 

Q. What about access to education? 

 

A. There is a provision for that, and there are amendments for that in government at the 
moment, I think for pre-primary to support disabled children. There's also a policy for 
free education. We also say that disabled people must be given the use of facilities and 
support services so that the education can be meaningful. 

 

Q. Do children with disabilities go to regular schools? 

 

A. For the blind, there are integrated schools and for other types of disabilities, they go to 
other schools. Only the deaf go to special schools. 


 �When you�re in government, 
the voices of the voiceless are heard:� 
an interview with Susan Chitimbe, Minister 
Responsible for Persons with Disabilities, Malawi 

 

By Ilene Zeitzer, conducted during the Rehabilitation International 

African Regional Congress, held in Durban, South Africa in October 2003 

 

 

 

 

 

 

 

Q. What do you think the impact has been of having yourself and other disabled 
individuals in high offices? Are there other people with disabilities in high offices in 
Malawi, and can you tell us about them and what do you feel the effect has been? 

 

A. Indeed there is a high impact in having disabled people in high offices. I am one of 
them, I was appointed Minster Responsible for People with Disabilities in the President's 
Office. It really has an impact because when you're in government, the voices of the 
voiceless are heard. Unlike before where we were only advocating outside of 
government. But, the advocating and the lobbying which we did while I was out in the 
non-governmental organizations, I think helped us to be in government now. But because 
I am in government now, I understand the problems of disabled people out there in 
society and I take their concerns to government�to the Parliament. 

 

Parliament or the Cabinet endorses or approves what non-governmental disability 
organizations need. For example, the policy we have now is the policy that has been 
written by non-governmental organizations, typically organizations of people with 
disabilities, the civil society, and government officials. It's a policy that has an impact on 
all Malawians and you can see that as persons with a disability, we can manage to work 
hand and hand with others. And we also have disabled people who are in the 
commissions of government. We have a lady who is a commissioner in the national 
commission of women and she is also disabled. But we are fighting for more seats in 
positions of government. Nevertheless, things are working, even though we are not really 
many, but we know that the numbers will increase in due course. 


 

EXAMPLES OF NEW POLICIES 

 

Q. Can you give some specific examples of new policies that are in place because of 
this enlarged role of disabled people and the influence of Disabled Peoples 
Organizations (DPOs)? 

 

A. What we can see now is that the policy for disabled individuals, which wasn't there 
before, has been worked on and people with disabilities are included and in every 
Ministry we are seeing that we have to mainstream disability issues. This has really 
helped, because if you are talking of education, you will find that persons now can talk of 
education for disabled people. And in health, it's the same. We are there in the system but 
what we are just working for now is the implementation. But the implementation is being 
taken on board because of this Ministry, the Ministry responsible for People with 
Disabilities, whereby the officers of my office are part of other committees in the other 
Ministries, so we are seeing that we are being included in each and every policy that we 
have in Malawi. 

 

Q. Does your office have actual oversight of every other Ministry in terms of new 
policies, new initiatives, new programs, new construction? Do they have to run it by 
you, or do you rely on the fact that you have someone in those committees? 

 

A. We really rely on the principal secretaries, because when we were having our policy, 
all the principal secretaries in government were invited to attend. The principal 
secretaries are the key officials of every Ministry. So they were brought on board and 
each and every principal secretary knows about disability issues, so when they are trying 
to work on a policy or any change in their Ministry, they are supposed to consider the 
perspective of disabled people. 

 

MONITORING & OVERSIGHT 

 

Q. Do you actually monitor what they do or do you rely on their understanding and 
hopefully their agreement with this? 

 

A. No, we actually check. 

 

Q. So you have oversight? 

 

A. We have oversight of whatever is happening. So either myself or the principal 
secretaries or other officials in the Ministry will be responsible. 

 

Q. So what happens if you discover, for example, that in a different sector, let's say 
transportation, they are planning to, I'll give a made up example, they are redoing the 


airport but they haven't made it accessible, or they haven't thought about access 
enough, what would your Ministry do? Would you have the power to call it back, to say 
�what a minute, before you go any further you haven't thought about this or that?� 

 

A. This is what we are fighting for and we are really doing that. We are supposed to 
monitor and see what is good for people with disabilities. 

 

Q. Do you have your own budget�does your office have its own budget? 

 

A. Yes, we have our own budget as a Ministry. 

 

EMPLOYMENT INITIATIVES 

 

Q. Can we talk a little bit about employment? I know most developing countries have 
very high general unemployment. Are there specific initiatives that you are pushing 
from your office to create more jobs for disabled people? 

 

A. We are really trying, but I think it is very, very difficult in Africa for most of the 
people with disabilities because most didn't go to school. So what we are trying to do is 
to create more businesses for disabled individuals or to create independent living through 
those small-scale businesses whereby they can be self-reliant. But it is very, very difficult 
for most of the people to go to work. There are others who have been to school and they 
are really working, but it is extremely difficult for us to create opportunities for work. 
Even non-disabled persons are missing out, they can't find work. So what we are trying to 
do is find out how we can involve disabled persons to be self-supporting, to make their 
living through small scale businesses or maybe bigger businesses, cooperatives, etc. 

 

REACTIONS OF PEERS IN GOVERNMENT 

 

Q. How do you think that the other non-disabled governmental people react to you and 
your office? Do you think that they just pay sort of token respect or do they really 
understand? I'm sure there are some individuals you have won over and some that you 
haven't, but how do you think that they regard and your office? 

 

A. Actually they respect me, they have the same respect as with any other Minister or any 
other person. They don't regard me because I'm disabled and think they can tease me or 
the like. I have been well received. 

 

Q. And you feel that they don't just look at you and your office as important when it 
has to do with disability, but that it is across the board with everything? 

 

A. That is right, because as a government Minister, I am a Minister for each and every 
one, but specifically for people with disabilities. They respect me as a figure of 


government who is trying to improve the lives of people with disabilities. That's what we 
are fighting for, we are there fighting for the Malawians, either non-disabled or disabled, 
but particularly for disabled persons because I'm in that office. 

 

REPORTING CHANNELS 

 

Q. And the office is at the presidential level, the same as it is in South Africa? 

 

A. Yes, we report directly to the President. 

 

Q. And do you think that that helps, rather than having you buried down in one 
particular Ministry, let's say health or social or education. Do you think it helps to be 
at the Presidential level? 

 

A. It does but even the other Ministries actually report back to the President. We can't do 
anything without reporting to the President. 

 

WORKING WITH NGOS 

 

Q. You talked a little bit when we first started speaking about legislation or policies for 
disabled people. Can you tell me a little bit more about how that works? Do you go to a 
Member of Parliament and ask him to introduce legislation or do you have the right to 
suggest legislation? 

 

A. What actually happens is that we work with NGOs. Now this policy came about 
because of the cry of disability NGOs, because we didn't have a policy, and it hasn't 
actually passed yet but it is about to pass. We went from the grassroots to the civil society 
with each and everyone else, so I think that's how we came up with this policy. We also 
work with the principal secretaries of all government Ministries, in that we have to 
scrutinize the policy just to see to it that it is fit for everyone who is disabled, or who is 
not disabled today, but might be disabled tomorrow, so it must be a policy for all people, 
for each and every one. So policy is initiated through NGOs, government, and the civil 
society to ensure that the rules to be put in place are good for people who are now 
disabled and [those] who might be disabled in the future. 

 

Q. But the legislation legally, from a Parliamentary position, would need to be 
introduced by somebody. So how do you do that, do you get a champion or can you 
suggest it to a Ministry to introduce legislation? 

 

A. We are working hand in hand with the Minister of Justice. He is the one who is going 
to introduce it. 

 

Q. Do you think that there has been measurable progress? Do you see progress? 


 

A. Yes, there is progress. I started when I was young as a disability activist, and then I 
was a Committee Member of different committees on disability issues, later on I was a 
Commissioner and now I am the Minister for People with Disabilities so we can see the 
fruits coming out of what we fought for and we know we have made progress and 
continue to progress. 

 

 


* This article originally appeared in DisabilityWorld 14 (2002), 
http://www.disabilityworld.org/06-08_02/news/rantho.shtml

 
Celebrating & mourning a pioneer in 
South Africa's disability rights movement: 
Maria Rantho *

 

By Shelley Barry 
Office on the Status of Disabled Persons, South Africa 

 

 

 

 

 

 

 

Mourning Maria 

I DON'T KNOW 

How to wear this sorrow 

It pulls over my head 

Leaving me without form 

 

I am loose threads ripped out� 

All my patterns unstitched 

By sorrow's sharp stabs 

 

Worn and frayed, 

I long to outgrow sorrow 

To tear it off, toss it aside 

To adorn myself with serenity 

And the beautiful garment 

of your smile 

 

Shelleyb, July 13, 2002 

 

 

As the country prepares to celebrate Women's Day with the aim of honouring the strides 
our women have made, one of our leading female activists passed away suddenly on July 


12, with the majority of our citizens being unaware of who she is, of the life she lived and 
of the immense contribution she has made. Her name was Maria Rantho and she was a 
warrior who dedicated her life to promoting equality for people with disabilities. 

 

She was a leader in the struggle for the recognition, respect and promotion of rights of 
disabled persons. Her death is a loss to her family, to the disability movement and to the 
nation at large. South Africa could not have achieved its successes on the promotion of 
rights for disabled persons without her commitment and tenacity. Her efforts spanned the 
nation and the region as a whole. In due course they spanned the world. 

 

Maria Rantho is a woman all South African citizens should have pride in. A qualified 
nurse, Ms Rantho became a wheelchair user after being involved in a car accident. The 
inequality she experienced as a person with a disability spurred her on to fight against the 
oppression of people with disabilities in society. She later became the chairperson of 
Disabled People South Africa, an organization that was formed in the �80 s to work 
towards the full participation and inclusion of people with disabilities in society. 

 

CREATING A NATIONAL �VOICE OF OUR OWN� 

 

When asked about the formation of DPSA in an interview last year, Maria Rantho 
explained, � We felt that there was a need to create a voice of our own, where we would, 
for the first time, be able to advocate for our own rights.� Ms Rantho spearheaded the 
drawing up of the first disability charter and was pivotal in the initiation of the Disabled 
Women's Development Programme, which aimed to address the specific discrimination 
that women with disabilities faced. She was also a member of the ANC's women's league. 
In 1995, Maria was responsible for heading the disability desk in the Restructuring and 
Development Programme (RDP) situated in the then Deputy President's office, which 
later became known as the OSDP ( Office on the Status of Disabled Persons) 

 

When South Africa moved to a democratic state in 1994, she was the first and only 
Member of Parliament in the national legislature who had a disability. She struggled to 
work in an environment that was designed without any consideration for the access of 
persons with disabilities. Maria was a very strong fighter and the physical, attitudinal and 
other barriers that she faced never deterred her from her commitment to serve disabled 
people. Last year Maria stated,�When I went to Parliament, disability was not on the 
agenda of Parliament itself. The struggle I had to wage to place disability on the agenda 
was a lonely one, because people were not familiar with disability issues.� 

 

DEMANDING NO LESS THAN THE UTMOST 

 

It was here, at Parliament, that I had the honour of meeting and working with Maria. I 
had recently become disabled after a shooting incident six months prior to starting work 
at Parliament. My task was to provide support to Maria in promoting the rights of people 


with disabilities in the Parliamentary environment. When I met Maria, there was so much 
I needed to learn about the politics of disability. She shaped my politics at a time when 
what I needed most was a clear understanding of what it meant to have a disability. It was 
not easy working with Maria. Yet I look back on it as being one of the most rewarding 
periods in my life. Maria demanded no less than my utmost and at times the pressure of 
the work and demands felt too much for me. When I didn't perform to her expectations, 
Maria was quick to point it out. At the same time, when she was pleased with work 
accomplished, she'd call me into her office and sing my praises for hours. I recall her 
words, �The thing is, life is short. And I don't want to tell you these things when you are 
dead. They're no use to you then. In life, you have to tell people what you think. Me, I 
can't pretend.� 

 

FINDING THE WAY TO MOVE FORWARD 

 

It was Maria's brutal honesty that first made me see her true spirit and that made me 
respect her immensely. In a world full of pretenses and false smiles, Maria was incredibly 
unique. It didn't matter how important or intimidating anybody was, Maria would never 
be afraid to express how she felt. She couldn't stand racism, injustice, indifference and 
lack of progress. She had a dream and goal in life and this was to see freedom for people 
with disabilities. Anybody in earshot would be lobbied to further disability rights. She 
didn't ever stop educating people, wherever she went. Many people knew this Maria, the 
no-nonsense woman who would challenge anybody in a flash. Yet very few were 
exposed to a woman who was exceptionally sensitive, who was easily hurt by the 
opinions of others who put her down or did not understand her. She was not afraid of 
tears and when they came, she often let them out behind closed doors. Yet, she would 
wipe those tears and find a way to move forward in the world. There was too much to do 
and it would appear that Maria instinctively knew that her time here was limited. She 
lived with an urgency that was remarkable to witness. 

 

Her son, Mpo, was the centre of her life�even though she felt torn between motherhood 
and the endless struggle that demanded her attention. She would tell me how people 
laughed at her in her chair and as a little boy, her son would shout to them, � Don't laugh 
at my mother! She just can't walk. That's all � Maria had endless stories like these to tell, 
of what it meant to be disabled, a mother, and a black woman. Always interested in 
lifestories, Maria and I planned that someday she would tell me her story and I would 
write it. � Do you think it would be an interesting book?� she would chuckle. 

 

TIME WE RAN OUT OF 

 

Ironically, we forgot about those plans, until six years later when I started working on 
proposals to gather stories of women with disabilities. Just two months before her 
passing, I called Maria to tell her that the time had come to tell her story. The Office on 
the Status of Disabled Persons was planning to launch a project called �Voice!� calling 


for the lifestories of women with disabilities in South Africa. Maria was enthusiastic, �Im 
ready!� she said. � Bring a thick book and a tape recorder� Between life, work, her 
schedule and mine, we didn't manage to make the time. Now, it is time that we have run 
out of. It has made me think about how we get caught up in overworking and often 
neglect to make the time to do what nourishes us. As we launch the Voice! Project this 
week, we are also calling for people to share their stories of Maria, so that somehow, her 
story can be written after all. An important step towards the telling of that story lies in the 
publication of the history of the disability rights movement in South Africa, to be 
launched next month. Some of Maria's story lies there. But most of all, her story lies in 
the progression of disability rights in South Africa, in Africa and the world. 

 

ROLES IN SOUTH AFRICA, AFRICA AND INTERNATIONALLY 

 

Maria was on the core team of people who drafted South Africa's disability policy, the 
Integrated National Disability Strategy, which was passed by Cabinet in 1997. In 1999, 
Maria left Parliament and was appointed to the Public Service Commission where she 
played a significant role in the fight against corruption. She headed some of the major 
investigations aimed at fostering good governance. She was still in the employ of the 
Public Service Commission at the time of her passing. 

 

Maria Rantho was a leader who was recognized in Africa and across the world, once 
occupying positions as Deputy Chairperson of Disabled People International (DPI) and 
the Pan African Federation of Disabled Persons (PAFOD). She was instrumental in the 
institutionalization of the African Decade of Disabled Persons, which has now been 
adopted by the African Union. In her lifetime, she set developments in motion in this 
country, which will forever shape our democracy. Hamba Kahle, Comrade Rantho. We 
take your vision forward. 

 

 


* This article originally appeared in DisabilityWorld 15 (2002), 
http://www.disabilityworld.org/09-10_02/women/bogopane.shtml

 
The Girl Who Asked Why: 
an interview with Hendrietta Bogopane, M.P. *

 

By William Rowland 

 

 

 

 

 

 

 

Assertive, sharp-witted, outspoken: all of these words apply to Hendrietta Bogopane, 
South Africa's 30-year-old blind parliamentarian. But there is also a softer side to this 
captivating woman of many parts. 

 

Q. Perhaps we should begin by talking about your parliamentary work and your life as 
a blind parliamentarian... 

 

A. I think it is important to start by saying that South Africa has one of the most diverse 
parliaments. We have 12 disabled members of parliament in the National Assembly, with 
many different disabilities. It's one of our biggest successes and we have proven that it 
works. I think other parliaments should look forward to this and that other disabled 
people in their own countries should demand representation. 

 

It's a very intimidating environment. Everything happens fast ... the working hours are 
extremely long ... there's no time for things like orientation or asking questions. It's 
hands-on and learning on the job. 

 

You don't know from what side you're gonna wake up from tomorrow because in politics 
ten minutes is a long time. For a blind person it is very, very challenging. There are 
volumes and volumes of material and if you use Braille, at no stage are you gonna be able 
to catch up. You've got your order paper, questions for the President (and Deputy 
President), minutes, reports, legislation before parliament: nothing is read out. You get 
these papers every morning and you must read them so that you can begin to know what 
will be happening, and where you must go. 

 


Q. How do you cope? 

 

A. I have a very experienced office manager, Ntsiki, who is also my personal assistant 
(PA). She has learned how to serve a blind person. She will read things before I come and 
circle the ones that are relevant to me, ones she thinks I need to know. She does this for 
me in terms of the order paper, and in terms of the questions she will scan them, or tap 
into the parliamentary website and print out a large print copy. I have managed to train 
my PA and she has become so parliamentary sensitive that she knows what is happening, 
when and how, and so she's become a very strong support. 

 

Q. Do you follow any routine, and are there any things that you do to sort yourself out 
for the day? 

 

A. You have to come in early�so that's what I do. Parliament begins functioning at nine, 
but I'm usually there by seven every morning. I have to get time to go through my e-
mails, before everybody arrives, before the phones start ringing. And then at eight my PA 
comes in, and that's the time she will go through the written things I can't read, that she 
can't scan, that's handwritten. Then we go through the correspondence and plan our day. 
There's an organised parliamentary programme that's standard for Monday to Friday. 
Monday is party day, Tuesday this, Wednesday that ...but I would say it's a very, very 
interesting environment, and very exciting to be in politics and a disabled person. 

 

PARLIAMENTARY COMMITTEES 

 

Q. You chair one of the parliamentary committees, don't you? 

 

A. Yes, I chair one of the most difficult parliamentary committees, established during the 
second democratic parliament�and I am very excited to be the first chair. It has one of 
the longest names in the history of parliament, but it is called the Joint Monitoring 
Committee on the Improvement of Quality of Life and Status of Children, Youth and 
Disabled People. The word �joint� means it is a committee constituted by both houses of 
parliament, with 17 members from the National Assembly and 9 from the National 
Council of Provinces�one from each province�and me, that's 27 members altogether. 

 

Q. What are the powers of this committee? 

 

A. To be very brief, it's monitoring, it's oversight. Besides the standard functions of an 
ordinary portfolio committee in the National Assembly or select committee in the 
National Council of Provinces of considering legislation, considering departmental 
reports, deliberating on budgets, and calling for public hearings on specific legislation or 
budget votes, this committee has additional powers. For instance, we have to ensure that 
each and every budget vote passing through parliament is child, youth, and disabled 


friendly. But also that legislation before any other committee of parliament is disabled, 
youth, and child friendly. 

 

We have provincial powers as well. There is a direct link to the provincial legislatures so 
we can know what they are doing. Not only that: we actually have to ensure that 
legislation is going to be successfully implemented by departments in terms of what 
programmes they put into place. And we look at whether those programmes are intended 
to improve the quality of life in the sectors we represent. Over and above this, we monitor 
everybody that gets government funding and operates in the field of disability. We are in 
the process of developing guidelines on how to work with NGOs�who gets money from 
government, and how to monitor the use of the money. 

 

Over and above that, we have the responsibility of ensuring that South Africa ratifies the 
international instruments relating to the sectors we deal with�your treaties, charters, 
conventions, and protocols. And not only that, we also have the responsibility of ensuring 
that South Africa meets its obligations with regard to particular instruments. It's a huge 
committee with a very, very big mandate and we have achieved quite a lot, I would say, 
for a three-year-old committee. 

 

Congratulations! That is certainly an achievement, also for the disability rights movement 
in South Africa. But now I want to go back to the early part of your career, which I think 
started with Disabled People South Africa (DPSA). 

 

Ja, I would start it right as a young person, and link it. I spent my school years in a 
special school, first at Bartimea School for the Blind and Deaf in the Free State and then 
at Filadelfia Secondary School, outside Pretoria. I completed as a private candidate with 
an adult centre. 

 

My life history... I've always had this dream�because I've gone through life with lots of 
problems, lots of challenges; and as I was growing up I wanted to find out why? I've 
always been a young, assertive, disabled girl who had questions that wanted answers. 
Why should I be in a special school? That is where it all started, from the why's and the 
why nots. 

 

When I left Filadelfia I started interacting with other organisations. NOBSA (National 
Organisation of the Blind in South Africa) was one of the first I came across, under the 
leadership of Ruth Machobane, when I had problems. Then I met DPSA and I started 
understanding how I can make my own dreams come true, of changing South Africa for a 
better place. Then I became the mother of a visually impaired child, Kealeboga, and I 
said I cannot have my daughter growing up like I did. The only way is to begin finding 
solutions to all my �why questions,� to be part of the solution. So when I was doing 
public relations at Pretoria Technikon, when I was in my third year, I applied for this post 
to be the National Co-ordinator of the Disabled Women's Development Programme. 


 

Q. And did you complete your diploma? 

 

A. I have a national diploma, a B-Tech and an Honours degree, specialising in media 
relations, public relations, and communications. 

 

DISABLED WOMEN 

 

Q. The Disabled Women's Development Programme�tell us about that. 

 

A. I had to start the programme from nothing. I had to mobilise women and fit disabled 
women's issues into the political agenda, with the establishment of the Gender 
Commission. I was fresh from school and it was my first job, and I had to learn on the 
job. I grew a lot from that and that experience led me into politics and into parliament, 
where I am now, because I had to debate disabled women's issues with the ANC 
Women's League and with the IFP Women's Brigade. Parliament was dealing with a lot 
of legislation and I had to develop position papers, do research, and monitor. I had to 
interpret the economy to women and I had to understand what the global village means to 
disabled women. 

 

It awarded me the opportunity to be everywhere. It gave me a chance to develop my 
listening skills, because I had to sit down and listen to women with different 
disabilities�quadriplegics, physical disability, deaf, blind. I spent time with them, asking 
them questions, so that I could represent them well. And that laid a very strong 
foundation for me in politics. 

 

And then I established what we call the Escom Disabled Women Achiever Awards. I 
must say this project is quite successful and still doing well. It has really become a carrot 
for disabled women. Every year they look forward to being on stage, receiving the prizes, 
being on television. It opens a whole lot of doors for the winners. 

 

AIDS 

 

Q. You are also an AIDS activist. Could you speak to us about that passion of yours? 

 

A. As I indicated... I've been a young girl who always had lots of questions. So amongst 
the questions I had was the issue of HIV and AIDS. When HIV/AIDS started becoming a 
problem in South Africa and women gathered to talk about HIV and Aids, then I asked: 
are disabled women represented? I went through the documentation and I analyzed the 
messages and strategies, and I started saying, this does not accommodate disabled 
women! Then in 1997, when preparations were being made to launch the Partnership 
Against HIV and Aids under the then Deputy President Thabo Mbeki, I took the initiative 
to influence the partnership to ensure that disabled people would be included; and that led 


to me becoming the first disability sector representative in the South African National 
AIDS Council (SANAC). 

 

Disabled people, women and men, are more vulnerable because of their disability. 
They're likely not to get the information, they're likely not to access the workshops. 
'Cause we do have a disability culture�if I may use the word�the messages are totally 
irrelevant, the messages are not disabled friendly. But also in terms of South Africa being 
in Africa: in the African Continent women are not in control of what happens in the 
bedroom. In African culture, where women have no say in relation to sex and sexuality�
that then impacts on their disability. They are women and they don't have power, but they 
are also disabled. There is no self-esteem and it makes it totally impossible that they are 
going to negotiate the use of a condom. 

 

Q. Some people seem to think that to have sex with a disabled woman can cure their 
AIDS. Is there really such a belief? 

 

A. Yes, there is. It's the rumour that having sex with a virgin cures your HIV; and 
because disabled women are regarded as asexual, then, automatically, they are virgins�
because nobody is expected to be having sex with them. Yes, the rumour is very strong 
and it puts disabled women at much higher risk. 

 

A SUCCESSFUL BUSINESWOMAN 

 

Q. Amongst all your activities you also find time to run a business? 

 

A. Yes, I am a junior partner in a public relations, events management, and community 
development company, Makwetla and Associates. We opted not to change the name 
because it was one of the first black companies in South Africa, founded by Angie 
Makwetla in 1992, and I came in as a partner in 1999. Angie believes I will add value as 
a younger woman, with the dynamics of change in public relations and events 
management. We have now added the components of research and community 
development�these are our four main streams. And we've brought in very strongly the 
issue of disability, to make all our programmes, all our projects, disabled friendly. It's 
part of our standard contract. 

 

Q. Have you been able to penetrate the private sector? 

 

A. Yes, our clients are mainly private sector. We're handling amongst our accounts the 
Sowetan Newspaper, through its Nation Building Programme�there are 18 nation 
building projects. Escom is one of our biggest clients, and we are dealing with Transnet, 
Telkom, and Anglo American. 

 


We offer a full package. We are dealing with their image as companies and we are 
handling their social responsibility. We communicate what they offer ... we go out and 
look for projects for them ... we run workshops ... we do research. If Transnet has 8 or 10 
million Rands for social spending, they channel it through the Makwetla account and we 
agree with them what projects they are going to sponsor. We will disburse the monies and 
monitor whether those projects are doing what they are supposed to be doing. We do a 
needs assessment; if they need capacity, we will organise that capacity. 

 

We also do a lot of awards. The biggest one that everybody associates with us is the 
Community Builder of the Year. We've celebrated our 13th anniversary running that one. 
Then there's the Young Communicator and there's the Escom Disabled Women Achiever 
Awards. And now we will be doing TWIB�Technology for Women in Business, which 
is our first project with a government department (Minerals and Energy). 

 

And what about Hendrietta the person, the woman? What do you do in your own time, 
when you are not rushing around in parliament or elsewhere? 

 

I love reading, and I read everything I can lay my hands on�braille, tape, and print. 
When I am driving, then I listen to tapes. I read braille mostly in bed when I just want to 
switch the light off before I go to sleep. I use my spectacles for print, and the books I fall 
in love with I send to be enlarged, so I can read them over and over again. My star being 
a fish, I am a spiritual person; I love reading motivational books which keep me going. 
My favourite author is Iyanla Vanzant�a woman, U.S. based. 

 

Q. And will there be a life after parliament? 

 

A. Definitely! I am an ambitious young girl. Anybody who follows horoscopes knows 
that a Pisces loves dreaming, fantasising about all sorts of things. I dreamed of a beautiful 
house, and I've managed to achieve that. I drive my dream car, a Landrover 4x4. I have 
two beautiful girls. And I always wanted to get married one day, which I know may seem 
strange, but marriage is part of my plans. I will be getting married on the 2nd of 
November. We have gone through our traditional wedding already, 'cause he's paid the 
lobola. We'll have the western part in November. So it's a very exciting life. 


* This article originally appeared in DisabilityWorld 23 (2004), 
http://www.disabilityworld.org/04-05_04/gov/matsebula.shtml

 
A Voice in the Presidency: 
an interview with Sebenzile Matsebula 
of South Africa *

 

By William Rowland 

 

 

 

 

 

 

 

The nexus between the new political establishment in South Africa and the disability 
rights movement is a powerful force for change. And the chief agent of change is a 
single-minded woman, Sebenzile Matsebula, Director of the Office on the Status of 
Disabled People (OSDP) at the Union Buildings in Pretoria, seat of the South African 
government. 

 

Q. What is the purpose of the OSDP and how did it come about? 

 

A. Both from the side of civil society and from that of government�but much more so 
from civil society�there was a recognized need for a coherent unit in the highest office 
in the country, a unit that would develop programmes to promote disability issues and 
facilitate the mainstreaming of disability in South Africa. During the reconstruction and 
development phase immediately after the democratic election in 1994 disabled people 
were deployed from the movement to work in the new Presidency. Those were the 
individuals who were responsible for setting up the unit for coordinating and 
mainstreaming. 

 

The primary objective I would say was to ensure that disabled people were no longer 
shunted from pillar to post. If you had a particular need as a disabled person or as a 
parent of a child with a disability in the past you would be told to go to department A. 
You would go to department A and they would say go to department B, and you would 
spend the rest of your life shuffling between departments with no resources and no joy in 
sight. So this office has to ensure that that doesn't happen anymore. But also it has to 


ensure that departments that have line functions deliver on specific mandates, and deliver 
effectively. 

 

Q. Could you explain the structure of the office and tell us about the people who work 
here? 

 

A. The Office on the Status of Disabled People resides within the policy unit of the 
Presidency. There are a number of management structures within the Presidency, and one 
of those is the policy unit. Within the policy unit the office is structured to address policy 
development, policy implementation, policy monitoring and evaluation. 

 

The head of the programme is myself, as Director. Currently we have two posts of deputy 
director and they have specific portfolios as middle managers. One is a media liaison 
position and the other is a change management position coordinating our provincial and 
local government work; but many other responsibilities get delegated due to the human 
resource constraints that we have. We also have four administrative officers within the 
unit, two of whom are contract-based and donor-funded. And there is a senior secretary 
as well. To add to this, and depending on the projects being implemented, there could be 
one or two managers under contract. An example was the manager we had for economic 
empowerment. Another example right now is the communications manager who is 
responsible for implementing a public awareness campaign. 

 

Q. What have been the achievements of the OSDP? 

 

A. Well, you could write a book about that; but let me pick up some highlights. There are 
several aspects: At government level one of our key successes has been the training in 
departments. When our new democracy started, a lot of posts were created to ensure the 
mainstreaming concept, and people were deployed into government departments to 
facilitate this mainstreaming. Those people would have had experience in social welfare, 
as teachers, and whatever, but they did not have experience or an understanding of 
disability. We then trained those people so that, as they discharged their duties, they had a 
clear understanding of disability as a concept, as a principle, and as a way of living. 

 

That has been a very successful project because, besides creating awareness and making 
people do their work effectively, it has enabled us to gain allies in government. Because 
of their strong understanding of disability, these people have become passionate about 
their work and go out of their way to promote disability issues. So we now have what we 
call �focal persons�, but they're actually allies that serve as our ears and eyes and inform 
us of what is going on and of any problems. If we need an entry point into a department, 
we know there is somebody who will work with us meaningfully. 

 

Q. And where have been your greatest successes? 

 


A. With the majority of departments, and certainly with the key departments of health, 
social development, labour, education, trade and industry, communications. All those 
departments have been active and have participated. We haven't had as much luck with 
the Department of Transport, primarily because of their ever-happening restructuring. 
Whenever we make an attempt to train, they're restructuring and no one comes. 

 

Then, that training has also been done with government departments at provincial level, 
which is even more significant because that's where delivery happens. And now we've 
moved on to local government�training for local councillors, primarily councillors with 
disabilities. Our feeling is, much as persons may have a disability, it doesn't necessarily 
mean that they will be able to articulate issues as effectively as we'd like them to do. And 
so we've empowered councillors to articulate the issues effectively. 

 

Q. Have there been any other achievements? 

 

A. Our public awareness campaigns. We have had several initiatives�not on a large 
scale�when we would use particular events, like the World Summit on Sustainable 
Development, where we organized a photographic and art exhibition that generated a lot 
of interest with people coming from all over the world and they had the opportunity to 
interact with artists with disabilities and to purchase their creations. We have also used 
the International Day of Disabled Persons to put up a huge public awareness campaign. 
Before the actual day and on the actual day we would have radio campaigns, television 
campaigns, publications, etc. Historically, it wasn't as large as we're doing it now because 
now we have somebody focused on it. 

 

Other achievements have been in terms of policy development. The Integrated National 
Disability Strategy came out of this office and that has served as a pillarstone for the 
promotion of disability rights. An offshoot of that policy has been other policies in 
various departments and we have guided the development of those policies. We've had 
major policies that have come out, for example on inclusive education, which was a 
major breakthrough. We were also involved in the development of legislation, such as the 
Anti-Discrimination Act and the Employment Equity Act, and we have made inputs in a 
number of ways. 

 

Another initiative has been capacity-building for civil society formations. Because of our 
own background as disabled persons in this office, having come from that background, 
we know that a strong and effective civil society is one of the reasons why in South 
Africa we've been successful when it comes to issues of disability. Initially, we identified 
what we refer to as marginalized groups of disabled people, which would be groups that 
maybe reside in rural areas or groups of women with disabilities, and we provided 
capacity through training but also through grants that enabled them to develop their own 
programmes. That has really been very useful because, while some of those organizations 


would probably have died, they have been able to sustain themselves to some extent. 
How far they go really resides within themselves�how they're managing the future. 

 

We have also had an exchange programme with our partners in Sweden where we had 
civil society groups from South Africa visit Sweden and vice versa. The objective there 
was not just to share our experiences, but to establish long-term relations, which is 
happening in some of the sectors, primarily the deaf-blind sector, where we still do have 
a great need to give support. 

 

Q. Some people say the disability rights movement in South Africa is running out of 
steam. Others say, no, it's changing in character. What do you say? 

 

A. I would agree with the latter position. I think it's changing its character and it's 
because of where we are now. Certainly, we can't exist as a movement as we did ten or 
fifteen years ago. Now that the focus is changing towards delivery and implementation, 
the movement needs to focus on that; to say, okay, the foundation has been laid. Now we 
need to ensure that what disabled people fought and struggled for bears fruit in the sense 
that we have tangible things happening. We're no longer into philosophies and those 
kinds of discussion, but we're into how we're making a meaningful and tangible 
difference in peoples lives. 

 

Q. How did you first become involved with the movement? 

 

A. I first got involved with the disability movement when I was still working in 
Swaziland. I remember having many interactions with yourself, Friday Mavuso, Maria 
Rantho�all those people that came out to Swaziland to create an awareness of this new 
shift in thinking. We had come from a culture of a welfare state, where disabled people 
were looked after and cared for by charities, by the good Samaritans. Then there was this 
movement, saying, in effect, �No, that actually isn't the right way...disabled people have a 
responsibility to effect changes in their own lives.� That was my first exposure, which I 
must say was a wonderful exposure. I was involved with the sector from 1986 as a 
researcher�because I was trained in the sciences�but it wasn't until 1988�89 that I got 
involved with the movement as a movement of people with disabilities. And I have been 
involved ever since, with an increasing awareness and an increasing understanding of 
what disability rights are all about. 

 

Q. We are all hoping for a comprehensive U.N. convention on disability, and you are 
representing South Africa in that process. What do you think is the outlook? 

 

A. I must say that sitting on the other side of the fence as government, it's a very difficult 
situation. I say it's difficult because as a disabled person I have aspirations. There are 
certain things I want to see in that convention. But on the other hand, as a representative 
of the South African government, you need to reflect back on what our own legislation is 


all about and what the plans of government are with regard to disability, and sometimes 
the two�my aspirations as a disabled person and the aspirations of government as 
government�are not necessarily in sync. That certainly presents a dilemma. 

 

However, I must say, as the one leading the process, I have a terrific team that brings on 
board both disabled and non-disabled people. I have Petronella Linders, the new Deputy 
Chair of the Youth Commission, and she brings a perspective that I find very useful. She 
is blind, while the rest of my team are government officials and are non-disabled. They 
have what I might call a decent understanding of disability and really want to be helpful, 
but at the end of the day they do not live with a disability. So, whatever their 
contributions may be, it's from a secondary perspective. My challenge is to balance the 
aspirations of disabled people with where the government wants to move towards. It is 
not an easy situation and I am constantly reminded by the members of my team that what 
I am promoting, much as it makes logical sense, from a government perspective is not 
realistic and therefore as a senior government official you cannot always be a proponent 
of a particular move. 

 

That sounds a bit negative but, as far as a lot of the articles currently in the draft are 
concerned, South Africa is ahead. We meet regularly as a task team and sometimes we go 
through the articles and we say to each other: �we've already been there, done that.� 
That's very gratifying. 

 

But we need to remind ourselves that this convention is not about South Africa. It's 
actually about the majority of disabled people who live on the African continent and it is 
their needs that we want to capture in the convention. And it becomes extremely difficult 
because most of the countries participating meaningfully in the process are in the north, 
while those who participate and reside in developing countries are people without 
disabilities who talk primarily as technocrats and bureaucrats. Their perspective is very 
different from what their own people with disabilities would present, if they had the 
opportunity. 

 

Q. Does the OSD, and do you yourself, have any role to play in the African Decade of 
Disabled Persons? 

 

A. Our role as an office was to facilitate the establishment of the Secretariat for the 
Decade. About four years ago we were approached by the disability community on the 
continent for us to lead the development of the African Decade; hence our role in 
convening a conference in 2003 that brought together representatives of government and 
civil society from all over the continent to deliberate on the African Decade. An offshoot 
of that meeting was the request to establish a Secretariat, recognizing the availability of 
good infrastructure and resources in this country. The South African government, through 
the President, agreed to that request and the OSDP was tasked with that responsibility 
and it has happened. 


 

I am happy to say that Shuaib Chalklen is now officially employed as the CEO, on 
secondment from the South African government, which means an immense contribution 
of resources by the government by way of Shuaib's remuneration and support. The rest of 
the funding is currently provided by SIDA, but Shuaib is in the process of mobilizing 
more resources. Now that we actually have a Secretariat in existence, with its 
headquarters in Cape Town and a satellite office being negotiated for Midrand, all 
responsibility has moved to Shuaib and our role will merely be to serve on the board of 
governors and on the committee that oversees the Secretariat. 

 

Q. Won't you tell us a little about yourself and your outside interests? 

 

A. I think my biggest hobby is raising two boys. I am a mother of two, eighteen and 
fifteen. Just that responsibility of knowing that you have these precious lives to look after 
and to nurture, to ensure that they grow into fine men, is a wonderful challenge. For me 
that is my only pastime; outside of that I don't have a life�I am still looking for one... 

 

I was born in Barberton in the then Eastern Transvaal, donkey's years ago. At ten months 
I contracted polio. It was 1957 and there was a terrible outbreak at that time. My mother 
didn't know it was polio, but I ended up in hospital with a very high fever and both my 
lower limbs became paralysed. 

 

Q. You're very close to the seat of power here in the Presidency. What is the political 
commitment like around here? 

 

A. What has sustained this office since we started in 1996 has been the political will, and 
the political commitment, and the political support. Before 1999 we were in the Deputy 
President's office, but after that we moved to the newly established Presidency, which 
meant that we were directly under the head of state of the South African government. 
President Mbeki has been a very strong supporter and proponent of disability rights. He is 
the patron of the disability movement in South Africa and the disability movement is the 
only civil society formation where he has agreed to serve as patron. He has refused to 
take up any other patronages and you can't ask for any greater commitment than that. It's 
at a very personal level. 

 

The same goes for Deputy President Jacob Zuma and the Minister in the Presidency, Dr 
Essop Pahad. The political principals in the Presidency are strong supporters and 
proponents of disability rights. They go out of their way to mobilize resources and they 
talk about disability issues wherever and whenever they can. Minister Pahad has even 
embarrassed some of his colleagues in Cabinet by asking them directly how many people 
with disabilities are employed in their ministries. When I hit a barrier, I know that if I 
approach one of the political principals that barrier will be removed. All of this has been 


a major contributing factor to the success of the disability rights movement in South 
Africa. 

 


* This article originally appeared in DisabilityWorld 24 (2004), 
http://www.disabilityworld.org/06-08_04/gov/interviews.shtml

 
�Parliamentarians with Disabilities� 
make sure that it does happen:� 
an interview with Sebenzile Matsebula, 
Director of the Office on the 
Status of Disabled People, South Africa *

 

By Ilene Zeitzer, conducted during the Rehabilitation International 
African Regional Congress, held in Durban, South Africa in October 2003 

 

 

 

 

 

 

 

Q. Tell me about how your office works? It's at the executive level, correct? This is 
unusual, isn't it? 

 

A. Actually, South Africa was the first country to use this model. Since then Mexico is 
the other country that has a similar structure, and more recently Namibia has adopted a 
similar structure in the office of the Prime Minister. The way it operates within the South 
African context, I won't speak for the other countries, is that it is a unit set up in the 
Presidency to coordinate, to facilitate, monitor and evaluate programs that serve or are 
designed to integrate disability into mainstream society. That's the overall mandate of the 
office�the coordination unit, the facilitation unit, and also to monitor and coordinate. 
We are not a service delivery unit because that is a function of each and every line-
function Ministry or government department, for example, the Department of Heath. 
Their role is to ensure that people get proper health care facilities, etc. The Department of 
Labor has its role, etc. But our responsibility is to make sure that it actually does happen. 
So in a sense it's like a policing body. 

 

Certain things need to happen, and sometimes things don't happen in government for 
whatever reason. And the reason why the office is located in the highest office in the land 
is because a Minister that gets a direction from the President on a particular issue that 


they are not serving or performing on, will certainly be forced to comply. Otherwise if 
every Minister was left to do whatever he wanted to do, there's always a reason 
(sometimes a legitimate, valid reason) why they cannot do it. But in this particular case 
it's set up to ensure that what government sets as policy about integrating disability into 
mainstream society does happen as integration into mainstream society. That is our focal 
reason for existence, to ensure that disability is integrated into every facility of 
mainstream society in South Africa. 

 

Highest number of Parliamentarians with disability 

 

Q. Where does proposed legislation come from? 

 

A. It comes from Parliament. Legislation is the job of Parliamentarians, and that is why 
(as the Minister was alluding to this morning) that South Africa has the highest number in 
the world of Parliamentarians with disabilities. It is precisely because it's part of an effort 
to promote integration of disabled persons, and therefore in Parliament every piece of 
legislation that goes through is supposed to ensure that disability is part and parcel of that 
legislation. 

 

Q. So everyone who's a Member of Parliament knows that he or she is supposed to be 
thinking about disability no matter whether they are transportation, or commerce, or 
agriculture or whatever. 

 

A. Precisely. But over and above that the whole idea of having Parliamentarians with 
disabilities is because they experience disabilities, so someone without a disability might 
want to say, �Ok, we want to ensure that disability is part and parcel of this particular 
legislation� but because they are not disabled they will not necessarily follow-up to make 
sure that that piece of legislation actually goes through. So the Parliamentarians with 
disabilities who are part and parcel of that machinery make sure that it does happen. 

 

Representing disability throughout government 

 

Q. Are there goals established across the board for the various governmental agencies, 
and if so where do those come from? 

 

A. Since independence in 1994, in every structure created since that date, the South 
African Government has ensured that there are disabled persons in those structures, for 
example, in the Human Rights Commission, the Gender Commission and the Youth 
Commission. Moreover, the people that would then be deployed to those various systems 
would come from the disability movement. So the disability movement would be 
informed through various channels that the Commission that goes through Parliament and 
the President would inform them that this process was going through. So they would say 
that they were selecting Commissioners for a particular Commission, can you make sure 


you give us a number of names that you recommend, and then those names would be 
submitted and go through the normal routine that everybody goes through to ensure that 
they are qualified to serve in that Commission. So they actually come from the disability 
movement. 

 

Q. Are there specific numerical goals for, let's say, employment or education? 

 

A. The only quotas we have are for the employment of disabled persons. The government 
has said that by the end of next year, two percent of the staff of every agency and 
company should be disabled persons and the Department of Labor has set up a process to 
ensure that it happens. There's registration of companies, they have annual sessions 
where service providers go out and check on how many disabled persons that they 
employ. But it's not only disabled persons that this particular system is following. It's part 
of the Employment Equity Act that caters to all disadvantaged people, including women, 
black people and disabled persons. But then over and above that, there is the 2 percent 
that speaks purely to disabled persons being employed. 

 

Roles and functions of the Office 

 

Q. Would it then be the role of the Office of the Status of Disabled People to go back 
and monitor, to look at each company and see what is happening? 

 

A. The primary monitoring function for that is with the Department of Labor, because 
their main function is to monitor labor issues. And then they report to us. We have 
quarterly reporting sessions with all governmental departments so that's how we are able 
to keep tabs on the development of all processes, not only at the Department of Labor but 
all processes that go on. 

 

Q. From where does your office receive financial support? 

 

A. From government. 

 

Q. If you wanted to undertake a new initiative, say a public relations campaign, can 
you do that? Is that within the function of your office? 

 

A. Well, that particular one, a public campaign, we are running a public awareness 
campaign because that's one initiative that doesn't fall within any particular department or 
scope. So we plan for that. South Africa has a three-year planning process, so we'll plan 
that and in the third year, the government will provide the necessary financing for that. 
We are embarking on that this year. It's our first big public awareness campaign. And all 
our funding will come from the government. 

 

Working with private sector 


 

Q. Do you work at all with informing the private sector�do you do outreach to them? 

 

A. Well, because we are just starting with that project [the public awareness campaign], 
we will. That's in the plan. The plan that we have will certainly incorporate everybody in 
society but we want to target mainly the corporate sector because they're the people with 
the money, they're the people, outside of the government itself, that are big employers. So 
we're going to target our program to them so they can understand what disability is all 
about and employment of disabled people�training, etc. It's unfortunate because I really 
can't speak about it because we haven't actually started, we've got plans but we haven't 
started yet. We just recruited a manager. But we will certainly be targeting business as a 
primary role player. 

 

Q. What has been a success in the U.S. is to highlight those employers who do a good 
job�use them in the ad campaigns, etc. 

 

A. We are already doing that on a provincial level. Our Office of the President is at the 
national level but we also have provincial offices, also called Office on the Status of 
Disabled Persons, in every province. They are already running those campaigns where 
they will have awards�an annual event�ere they'll have particular categories, whether 
corporate sector or whatever, where they will recognize the effort of companies or 
whichever category they have selected that year to recognize their efforts in promoting 
the rights of disabled persons, including employment of disabled persons. 

 

Reporting system on implementation of national disability strategy 

 

Q. Do you have an oversight rule with regard to other departments? 

 

A. Precisely. As I said, we have required reporting systems. What we have is an 
integrated national disability strategy. It has a whole set of recommendations at the back 
for every government department that say these are the things that the government 
departments need to do. It's not complete because it was done in 1996 and new ones have 
since come on board, but at least that gives you a framework for what government 
departments are supposed to do. So they would follow those recommendations and then 
we at the national level work at what we call the Inter-Collaboration Committee on 
Disability. In that Committee, we are represented by people who are nominated by the 
Director Generals of each department to represent the department in that Committee. And 
it is in that Committee where, at the beginning of the year, we'll have a planning session 
where they'll come and report on their plans and programs for the year. 

 

Then four times during the course of the year, they'll come and report to us on the 
progress so far on the implementation of those various projects that they reported on [at 
the beginning of the year]. So that's at the national level. We have a similar structure at 


the provincial level, which is the Inter-Provincial Forum which also constitutes all the 
government departments at the provincial level who come and report on their programs. 
Their plans are critiqued�is this what the country really needs at this particular point? If 
it passes, then they go ahead and implement and report on it quarterly. So that's the 
monitoring part I was talking about earlier. 

 

Two-way street on legislation and policy 

 

Q. With the issue of new policy�can your office suggestion legislation if you see a 
need for it? 

 

A. It works both ways because people who sit in Parliament are there to represent 
constituents, so constituents will tell Parliamentarians, �This is the issue. What are you 
doing about it?� And then Parliament calls us. We have regular reporting to Parliament 
via a committee called the Joint Monitoring Committee on the Status and Quality of Life 
of Youth, Disabled Persons, and Children and that Committee is headed by a disabled 
Parliamentarian. Now that Committee will then call me or they'll call anybody from all 
the other departments depending on the issue. And they'll ask if they are aware of the 
particular process, and go and do something about it. Then the government official will 
go back, because we have the resources to do research or whatever, and then 
subsequently develop a policy. But you see the policies come from the Department. They 
only go to Parliament for approval so that they go through as legislation. 

 

We do the groundwork in terms of developing what the concepts are, what the issues are, 
developing the policy. But it's only Parliament that will pass it as policy. They are not 
necessarily the initiators of the policy. They are one part but the other part is us because 
in all government, particularly in our office, we work to a large extent with civil society, 
we interact, we attend their annual congresses, etc. so we are aware. They tell us what the 
issues are, and then we'll take that back to our office and say, �this is what grassroots 
people are saying, this is the need at this time.� And then we'll develop this policy and 
submit it to Parliament. It's challenging, and it's such a unique situation because you don't 
find it anywhere in the world. But there is a historical reason why it was developed. But 
it's not an easy thing to copy because it has historical reasons emanating from the time of 
the struggle and the relationship that disabled people had with the African National 
Congress. It's because of that the relationship was able to grow and to have the 
recognition from the time of Nelson Mandela�it's the recognition and respect that it has 
had and continues to have over the years. 

 


 �It�s about mainstreaming, but it�s also 
about having expertise that can be shared:� 
an interview with Charlotte McClain Nhlapo, 
Commissioner, South African Human Rights Commission 

 

By Ilene Zeitzer, conducted during the 
Rehabilitation International African Regional Congress 
held in Durban, South Africa in October 2003 

 

 

 

 

 

 

 

SETTING POLICY 

 

Q. What happens when you have an office at the higher level like you do in terms of 
the mechanism for setting disability policy? 

 

A. I think I would preface anything by saying it's invaluable to have people with 
disabilities in any office�in our situation it was more about having people in the Office 
of Human Rights. When I came to the Human Rights Commission, there was a person 
with a disability who had been appointed through a process of disabled people putting his 
name forth and he then was the Commissioner on Disability Issues. I came in on the 
ticket of child rights but obviously even in relation to child rights the issues that were of 
concern to me were the issues relating to the rights of children with disabilities. And so 
for me it was very important to have somebody in my office who was responsible for 
disability issues and who was himself disabled, but also to be able to come into an office 
at that level on rights issues to be able to introduce the disability perspective to it. Times 
have changed, and I now am the Commissioner responsible for children as well as for 
disability issues. 

 

Q. So that person has left? 

 

A. That person has left. But again, I think it is so important to have a person who is 
disabled in a position like that and not have someone who is non-disabled talking about 


disability rights. I think what it has afforded really is that you have somebody there who 
can motivate for disability issues and make disability issues at the level of developing 
policy, a cross-cutting issue. And so that it doesn't remain something that's left out, 
because it will be left out. My experience has been that I constantly have to say, �what 
about disability, what about disability?� And that's beginning to change now, people are 
beginning to introduce disability almost automatically and I think it's because almost 
from the beginning of the Commission, we had somebody with a disability at that level of 
Commissioner. 

 

So now it's standard practice when we do protocol within the Commission. We send out 
protocols to all the government Commissions to find out what progress is being made in 
terms of the rights that are contained in our Bill of Rights and we ask questions that are 
related to vulnerability and vulnerable groups. We always ask questions around 
disability. �What has the Department of Education done in terms of inclusive education? 
What are they doing for adult disabled learners?� So in terms of our monitoring of 
government's progressive realization of rights, the issue of disability appears. But I think 
again it goes back to the fact that we've constantly had somebody there to say, �let's look 
at disability rights issues.� So within the Commission, the Commission has been fairly 
sensitized. A lot more could be done, but I think it's really a good thing to have. 

 

DEVELOPING DISABILITY EXPERTISE THROUGHOUT THE AGENCY 

 

What I am trying to do now is not be the only person that deals with disability, and so 
very often I will ask a colleague. Not too long ago there was a big conference on 
disability and the right to work and employment, and I particularly thought that it was not 
good for me to go to that. I asked one of my colleagues to do it because I want the other 
Commissioners also to get an understanding of the issues that we're dealing with, so that 
when they talk about equality they too can talk about disability and not necessarily have 
to have me there to do that. So, it's about mainstreaming but it's also about having the 
expertise that can then be shared and developed within the Commission. And then 
obviously with the greater work that we do which is partly to advise government on 
various policies and to monitor government, so the aspect of disability always comes up. 

 

LEGISLATIVE PROCESS 

 

Q. Can you suggest to members of Parliament that certain policies are needed? Tell me 
about how you work with the legislative process. 

 

A. One of our functions is particularly to advise government on legislation. That can be 
two-fold, it can be a more proactive role which would be to advise on the gaps that we 
see in the legislation or just the basic non-existence of legislation that we think is 
necessary. Or it could be a more reactive approach where bills have already gone through 
and then we're asked to comment on them. We're almost always asked to comment on 


bills. In fact we have a legislative monitor who sits in Parliament and informs the 
Commission on pieces of legislation that she thinks that we should be commenting on. So 
we can either do it proactively or reactively. So, definitely we can suggest legislation. 

 

In relation to disability, we've looked at the Social Assistance Act which is being 
amended and there we've made comments and recommendations about issues we think 
are important in relation to disability, and we've done that with other pieces of legislation 
too. But again I think there's a lot more that the Commission could do in relation to 
advising government on legislative intent and on amendments. We've tended more to 
work around amendments and bills that have already gone through and to do less on 
proposed new pieces that we think are important. But also we may not do it formally in 
the sense that we may not actually send in a written bill, but we very often facilitate those 
kinds of discussions, and not related to disability, but say in relation to the right to food. 

 

We've been able to facilitate meetings where the issue comes up and it's because the 
Commission has felt that there was a gap. Plus in our monitoring process that we've 
developed, we make recommendations and very often in those recommendations, we'll 
make specific recommendations that relate to legislation. We may say for instance in 
relation to disability, there's lacking A, B, C, and D. And we often have inquiries, 
national inquiries. Last year in November we had an inquiry stroke research project that 
looked at a barrier-free society and we came up with a report that made specific 
recommendations in relation to looking at our building code and trying to harmonize that 
with our constitutional principles. So some work has been done in that regard. 

 

USING THE HUMAN RIGHTS PERSPECTIVE ON LEGISLATION 

 

Q. The legislative monitor mentioned�would that person's job be to look at all 
legislation irrespective of whether technically it relates to disability? 

 

A. She looks at all legislation with a view to see how we can input into that legislation 
from a human rights perspective, and so it could be disability rights, could be children's 
rights, could be the rights of older persons. 

 

Q. What about things like transportation. For example, if your Minister of 
Transportation was proposing new guidelines for trains? 

 

A. Theoretically she should be doing that, but we've got one person in Parliament and 
we've got masses and masses of bills coming through, so we haven't been able to have 
that kind of eagle eye that we want to say, �what's happening in terms of transportation 
regarding disability.� So those pieces of legislation probably have slipped by unless it's 
brought to our attention and then we look at making a submission specifically on that. 

 


Q. How attuned are your Ministers in other Ministries to the issue of disability and to 
the issue of access and human rights from a universal perspective? Are they thinking 
about disability? 

 

A. I think that they are, and I think a lot of it goes back to the fact that we now have the 
integrated disability strategy. And I think that strategy as the kind of overarching strategy 
for government almost necessitates that they begin to think that way. Thinking is one 
thing, implementing is another. And so if you looked at the various governmental 
policies, the issue of disability is often addressed in policy, in theory. In practice, it's been 
very different. The Commission has a component of legal services, and we are able to 
receive complaints from any legal entity and from the public on all issues related to our 
Constitutional mandate and so issues around disability would fall into that. 

 

SO FAR, FEW COMPLAINTS RELATED TO DISABILITY DISCRIMINATION 

 

But I must say, in that regard I have been disappointed because we have had very few 
complaints related to disability discrimination. I can understand why historically. I 
understand the fact that you are looking at a segment of society that has been excluded, 
has been by and large silenced, hasn't really had a voice, and therefore are not really 
aware of what is out there, even within the new dispensation. And so people don't use the 
systems that are in place. 

 

Q. Do they know about it? 

 

A. I think that's one problem. People don't know that the Commission exists, and if they 
do know that the Commission exists, they don't know how to access it. And to a large 
extent that is a fault that we should take responsibility for, because the Commission needs 
to be able to be out there, to be accessible. But obviously there are constraints and 
limitations as to what we can do. My concern is always around raising expectations and 
being out there, but not really doing it. So for me, I don't want to tread softly, but it has 
been a concern for me. I often feel that we don't use the kind of powers that we have as a 
Commission, but I also don't think that we're used to the best of our ability, and that's a 
concern. 

 

POWERS OF THE HUMAN RIGHTS COMMISSION 

 

Q. Can you take someone to court? 

 

A. Yes, we can, we have those powers. 

 

Q. Could you get a monetary settlement on behalf of a person? 

 


A. No, we couldn't because that would be a civil settlement. But we could take punitive 
action. Having said that, we have taken no action. And again, I think a lot of it has to do 
with the fact that I was working on a case and because I saw it from a disability 
perspective, a disability rights perspective. I didn't see it as a social welfare issue, even 
though it was very much within that domain of health and social welfare. The situation 
was that I was told by a journalist that there was a young boy who was severely disabled 
as a result of a bad operation in one of our rural hospitals, and I found that it wasn't just 
one boy, but several young boys. I was outraged, and was told there was nothing they 
could do about it. I wrote endless letters to the Department of Health in the province 
asking what was going on, why there wasn't proper nutrition, occupational therapy, etc. 
And I was ignored, I was ignored by the MEC, who is basically the equivalent to the 
Minister in the province. So as a Commissioner, I have the power to subpoena, and I used 
those powers. So we subpoenaed the MEC to the Commission and she came with her 
lawyers and we developed a plan around this particular child, which included respite, 
nutritional packages, assistance from the state. So I think the Commission has made some 
strides. In terms of looking at children being discriminated from schools, we've been able 
to go in and with not too much hassle we've been able to talk to principals and say look, 
�They are different. You can be creative. All you need to do is bring the teacher 
downstairs.� I think a lot of it has to do with being passionate about it, being aware of the 
issues. And quite frankly I don't think a non-disabled person could have been as 
committed to these issues. 

 

COMMISSION STAFFING 

 

Q. How many people do you have working at the Commission? 

 

A. Our act allows for 11 Commissioners, we only have 5 at the moment and one part-
time Commissioner and a secretariat which is our support made up of about 80 people 
and 5 offices in various provinces, and there we have a provincial officer, a legal officer 
and a educational officer. Each Commissioner is assigned a province, and because we 
only have 5 Commissioners, each one has 2 provinces. The Commission is a term of 7 
years. The way Commissioners are appointed is that constituencies and various interest 
groups submit names to Parliament. Then there is a short list and interviews are 
conducted by multi-party meetings and then Parliament makes recommendations to the 
President who then makes the final appointment. And last year, the President only 
appointed 6 of the 11 people submitted, partly because of budgetary restraints. 

 

Q. Do the Commissioners have specific groups they represent or is it all supposed to be 
crosscutting? 

 

A. We have thematic portfolios. So thematically, I'm responsible for the rights of 
children, people with disabilities, and economic and social rights. We also have a 
Commissioner responsible for the rights of older persons, another responsible for the 


rights of prisoners, etc. We have a separate Commission called the Commission on 
Gender Equality, which is not part of our Commission, but that we work closely with. 

 

50 HUMAN RIGHTS COMMISSIONS AROUND THE WORLD 

 

Q. Do you know of other countries that have Human Rights Commissions like this? 

 

A. Yes, in Africa there are a growing number of them. There's one in Malawi, Zambia, 
Kenya has just started one, Uganda has a very good one, and Ghana has an exceptionally 
good Commission. And there are a couple in North Africa. India has a very vibrant 
commission. They are gradually on the increase. At last count, I think there were 50 
internationally. 

 

Q. In the U.K., as you may know, they have a Disability Rights Commission and there 
has been a big controversy as whether it should be folded into a larger Commission�
such as the one on gender quality, etc. The debate is to whether it would weaken it (it's 
quite strong now) to be part of a large, overarching Commission? 

 

A. Well, we had that debate in the early years of the Commission, and I don't want to say 
it was a compromise but the decision was to have a Commissioner in the Commission 
responsible for disability issues and that's what happened. But that's somewhat changed 
because as I said I'm not there now necessarily just on disability issues, there's a whole 
range of other issues. What I would really like to see, and I'm struggling to do this, is to 
set up a unit within our Commission that deals with disability because I can't do it dealing 
with children and economic and social rights issues as well. And so we are looking for 
funding in relation to setting up a unit that could do that. A unit that could work on 
sensitivity issues, because we do human rights education and very often we require an 
element of sensitizing people around diversity and more particularly the issues of people 
with disability. I can't do that, I mean there are just too many things happening. And so 
we really require people who can actually be there to do that kind of thing, and it's 
something that we're looking at. 

 

REPORTING CHANNELS 

 

Q. Is the Commission at the Presidential level? 

 

A. No, it's a constitutional body so we report directly to Parliament and we can report to 
the President. And the reason that we're outside of government, I think for us, it has been 
really critical to maintain independence and impartiality from government. It's because 
one of our formal mandates is to monitor government, and you can't be in government 
and monitor government and therefore it's been important for us to be outside of that. 
And it's often a very strange or strained relationship where you advise, you monitor�
very often people say we are both the judge and the prosecutor, etc. 


 

Q. You obviously would have to do a lot of negotiating, I would think? 

 

A. Yes, I think yes, certainly negotiating has become really important for us. First of all it 
really speeds up a lot of things�instead of going through lengthy and expensive court 
processes. But even just in terms of the cases we get, because very often we are able to 
just mediate instead of going to court. Mediate, educate, talk, negotiate�that's becoming 
more and more of what we like to see. There was a time when the Commission was 
issuing subpoenas to like19 Ministers and Directors General, and it was a bit rough but I 
also think it was necessary at the time to show that the Commission had teeth and that we 
weren't afraid to use them. Also, that there are responsibilities and Constitutional 
obligations that the state has in terms of responding to our requests for information. I 
think it's also a question of growing and maturing and finding different ways of 
communicating. 

 

PUBLISHING PROGRESS REPORT CARDS 

 

Q. Do you actually publish every year for example how well each Ministry is doing in 
that regard? 

 

A. Yes, we submit a full report to Parliament on how the various departments have 
progressed on the particular rights in question and then we make recommendations where 
we think there are gaps. And that's what I said early on, that sometimes those 
recommendations will include looking at the development or amendment of legislation. I 
think we, as a Commission have been less efficient in terms of following up on our 
recommendations. So that's something that we are possibly looking at having a 
monitoring person in our Commission who looks at the recommendations. Because we 
make recommendations not just in relation to the state but we make recommendations in 
relation to individual cases that we settle. And that often requires some follow up��Has 
it happened? Did it happen effectively? If not, why not?� and where to go from there. But 
we have some very interesting cases in the wings. There's a disability discrimination case 
that we hope to be taking to the Equality Board. We've just opened up our Equality Board 
and there's a case that's come up that I think is right for that. 

 


 �I am there to personally articulate 
what disability is all about:� 
an interview with Wilma Newhoudt-Druchen, 
MP, South Africa 

 

By Ilene Zeitzer, conducted during the 
Rehabilitation International African Regional 
Congress in Durban, South Africa, October 2003 

 

 

 

 

 

Q. What do you think has been the main impact of being a person with a disability in a 
high office? Do you feel that you are a token, do you feel that you are a voice crying in 
the wilderness some days? Do you feel that you are advancing the agenda for disabled 
people? 

 

A. Well, first, I'm definitely not a token, and I can't be. Secondly, because of my 
language being a very visual language a lot of attention has been paid to that in 
Parliament alone and not just among staff of Parliament but the Members of Parliament 
themselves. For example, many of the black MPs�because the black culture does not 
accept disabilities very easily�when they go to their constituencies, they meet parents or 
other disabled people, and now they have become more aware. Some MPs didn't know 
that disabled people are entitled to a bond or that there are schools that take disabled 
people. So they will come to me and ask me questions. Before when I entered Parliament 
they would keep quiet, they didn't know how to approach me, but now MPs come up to 
me. Some of the MPs' family members are disabled and now they will come and tell me. 
They feel proud of the fact, they will say �Oh my brother's child is deaf or is blind or is 
disabled in some other way.� And then they themselves, they say to me that �they would 
love to learn to speak sign language.� They would come to me and ask me to help them 
learn certain signs and so they would become more aware of deaf issues and of sign 
language. 

 

ARTICULATING DISABILITY 

 


I myself am not really usually emotional, but I know sometimes in my speeches in 
Parliament I am emotional about disability issues because I'm there to articulate 
personally what being disabled is all about. I want to bring that across to the MPs and to 
make them aware. Many of the opposition party will come to me or see me and say thank 
you, you have educated us about not only your particular party but ours as well. Little 
things like that break down the barriers. But one problem is that the department must 
implement these things, and the departments are very slow. We constantly have to go to 
them and remind them and say, �Listen, you have to implement things for us�we've got 
policy, we've got legislation.� But the implementation is not happening, and we keep on 
going to Parliament and reprimanding the departments all the time. We say that we have 
to monitor the departments to see that they are implementing these policies that can 
change the lives of disabled people. 

 

HOW PARLIAMENTARY COMMITTEES WORK 

 

Q. Do you get to choose the Committees you are on? And if so, can you use some of the 
budget that the Committee has oversight on to direct more activities toward disabled 
people? 

 

A. We can choose the Committees we want to sit on, but the political parties might also 
say that there are too many Members on the one Committee and they will then delegate 
another Committee to that Member. But you can choose your own interest. I'm an official 
member of the Committee on Communications. I'm also a member on a new Committee 
that was established in 1999 that is responsible for improvement of life and status of 
children, youth, and disabled persons. The Committee itself has a budget. We hold public 
hearings, we go on tours�national tours, provincial tours, international tours. We have 
too many provinces to visit in one year, so we will pick one province where we need to 
go. But every department has a budget. We will go to each department and ask them for 
an annual report and we will want to see the budget, and we will look at the budget and 
see how many funds have been allocated for particular policies. And we can then ask, 
�What has been done?� And they will say, �Oh, we are not aware of disability issues.� Or 
they will say they never asked for funds from the department of finance. So they can ask 
for this next year and we can come back to them. But it is actually like that. 

 

Concerning the Committee budget, for example, if one of us wants to come to a 
conference like this (overseas), the Speaker of Parliament will have to approve that 
budget. Each member does not have his or her own budget. Parliament will be allocating 
funds to a Committee and that's the money you use. We also have constituent funds. 
When Parliament closes or is in recess, we get some funds to do constituency work in the 
community�especially for your own area. So my money, my little money, must cover 
my car expenses, my accommodations, maybe transport and refreshments for people who 
come to the venue or the meeting. I believe that the deaf have no access to Parliament not 


even via the TV so what I do is I go out to the community, the deaf community, and bring 
Parliament to them. So my money, my constituent money is used for my meetings. 

 

NOMINATION PROCESS 

 

Q. So you're not nominated from your district, the party puts you on the list? 

 

A. Either through your branch in your local area or through a person who has a very good 
relationship with the ANC. So the Disabled People of South Africa negotiate with the 
African National Congress (ANC) and people would like to nominate these five specific 
people to be on the party's list and the ANC agrees and says they will be part of the 
national list. 

 

Q. Do you have a staff as a member of Parliament�a staff that works with you? Or is 
it just a committee staff for everyone to share? 

 

A. I'm a normal MP, only recently I was promoted to a whip. A whip is basically, that 
you supervise a certain number of interests. Normally, MPs don't have their own staff, 
but a whip has a chief person. Whips share a secretary, so most of the time I do my own 
paperwork. I contact the deaf, I know the deaf community, I know the disabled 
community. If there's no interpreter, I will then go to this one secretary with whom I have 
a very good working relationship, and that's who I basically work with. We don't have 
our own staff. Maybe the chairperson of the Committee will have his own staff, and that 
would be a secretary and a researcher. 

 

WHAT PROGRESS CAN YOU POINT TO? 

 

Q. Do you feel that there has been measurable progress in your country in the specific 
areas such as education, access to education, particularly for kids with disabilities? Are 
you things that you can cite that you feel have improved in recent years? 

 

A. Yes. The ANC government didn't believe in mainstreaming and, I don't believe, are 
fully converted to mainstreaming yet. But they are aware that, the educational department 
is aware, that they cannot simply implement mainstreaming. For example, a deaf child 
going to a hearing school right now, there will not be any interpreters�they will not get 
the assistance they need in a hearing school. There aren't interpreters in all classrooms, 
maybe not even one interpreter all day, so that is the question now. That is what we are 
working to find out, so we need to be realistic. In the past, in the schools for the disabled 
children, education was weak, it was totally incomplete. But it has improved up to now. It 
hasn't been 100 percent, but the education is improving in the schools for disabled 
children. 

 


Recently, the deaf had a march to fight for sign language to be instituted in schools 
because the education department passed a new syllabus. For eight years sign language 
was supposed to be part of the syllabus but it was not. The Department of Education took 
note of that, so just recently they took up a task team to work this out and the deaf people 
of South Africa and the department of education are now looking at how sign language 
can be part of the curriculum. You must remember that the teachers right now in the 
schools for the deaf don't know sign language or only know a little. Do they understand 
bilingualism? Do they understand the whole purpose of bilingualism? They do not teach 
via sign language�do they know how to explain sign language as a language? Do they 
understand that? So they are discussing how they are going to do all these things. All 
this�that all teachers must sign�is supposed to be implemented before January 2004. 

 

FINDING A SOUTH AFRICAN SOLUTION 

 

It is issues like this where you can see the progress. It is slow, but issues like that help to 
see that if the department heads are made aware then they will do something about it. The 
problem however is that South Africa is not like in America where there is a lot of 
research being done to decide why sign language is so important, and things like that. 
They also prove that South Africa's ways on doing things. They have never done research 
like that at universities. It's like the chicken or the egg type situation. Do we go in and 
teach sign language or do we do the research first? Which comes first? It's that type of 
situation. What works overseas, may not be the right solution for here. It's important that 
we find a South African solution. 

 

MAKING TELEVISION MORE ACCESSIBLE 

 

My chairperson said, �Wilma, you came in. But you came in with a different view of 
communication.� He said he never thought that deaf people communicated. But the way 
that deaf people communicate is also my work. The first time I went to an ANC policy 
conference, I thought I was going for the youth and the children and the disabled people, 
but when I came they said, �No, you're coming for communications.� And they put forth 
a resolution that said within 3 years, the South African Broadcasting Corporation 
(SABC), our TV channels, must have captioning, sign language, and provisions for the 
blind. So the department has to implement the ANC resolution that became the policy for 
the department. So when the resolution was finished, we then went to a full amendment 
vote that said accordingly that the SABC must think of the needs of the deaf and the 
blind. This was the first time, it had never been in the vote before, with the disability 
people in the political mainstream. I don't know if I will be back next year or what 
because we have elections next year. But whatever happens, the SABC must implement 
that for the deaf. The SABC is quite sick of me, they don't like to see me when they come 
to meetings. But when it comes to access to information for us disabled people, the 
amendment is so important. I mean, that to me is something that has happened for us as 
disabled people. Yes, maybe right now you won't see things happening fast but the 10 of 


us who are in Parliament came in 1999. To expect implementation to occur so fast, well 
that costs money. But, the goal is that things must change, even if it's slowly. 

 


* This article originally appeared in DisabilityWorld 25 (2004), 
http://www.disabilityworld.org/09-11_04/gov/sekabira.shtml

 
�We�re acting as role models for young disabled 
persons and even parents of disabled children:� 
an interview with Florence Nayiga Sekabira, 
Minister for Disability and Aging, Uganda *

 

By Ilene Zeitzer, conducted during the 
Rehabilitation International World Congress 
in Oslo, Norway, June 2004 

 

 

 

 

 

 

 

Q. Were you a Member of Parliament prior to your current position? 

 

A. Yes, I was a Member of Parliament. I got to Parliament in June 1996, and I was 
appointed Minister of State for Elderly and Disability Affairs in August 1998. 

 

Q. What do you think has been the impact of having yourself and other disabled 
individuals in higher offices in Uganda? Can you tell us about them and what do you 
feel has been the effect of having you and these other individuals in these positions? 

 

A. I may not be able to remember all of them who are in higher offices, but first in the 
political arena, we have five Members of Parliament. Two ladies�besides me, the other 
one is Margaret, and then the other three are men. At least one of them is deaf, the other 
woman is visually impaired and then there are three of us with physical [mobility] 
disabilities. Much of the effect of having us at this level has been awareness raising. 

 

ROLE MODELS NEEDED FOR VARIETY OF GROUPS 

 

We're acting as role models to many, to the young people with disabilities and other 
disabled persons and even to the parents who have children with disabilities. We 
encourage their hopes when they see us in such positions�they have hope that, one day, 


their children may take up such positions. It also gives them the knowledge that having a 
child with a disability is not a curse as it used to be thought of. Instead, that if their child's 
potential is developed, she can contribute to the family and to the nation at large. So this 
has been a positive impact. 

 

INFLUENCING DECISIONS AT HIGHER LEVELS OF GOVERNMENT 

 

Secondly, we have been able to influence decisions at high up levels of government. Our 
sitting in Cabinet helps to ensure that whatever judgment goes through Cabinet is 
disability sensitive or friendly. The Parliament will look at what Cabinet has provided 
and if they wish to improve on it, then they do so. So then you have these two levels 
where you can ensure that whatever comes out of Parliament is disability friendly, 
disability inclusive. So we have been able to influence whatever policy, laws and so on 
goes through the government and its programs. For example, in the case of universal 
primary education, that's a program which has been created to ensure that each and every 
child below 18 years has the opportunity to go to school. Government meets the tuition 
fee, the parents have to provide only school fees and money to feed their children and 
also to buy books. We help to ensure that the policy that establishes that program 
provides for children who have disabilities. It has resulted that in families where there are 
children who have disabilities, those children should be given priority because when this 
program was established to begin with, it was to pertain to four children per family. 
Those would go to school for free, I mean attend without paying tuition fees. But the 
federal government decided that every Ugandan child should have education for free, so 
we had to ensure that children with disabilities were provided for. We insisted that in a 
family where they have children with disabilities, they should be given priority among 
the four. 

 

IMPACT ON PUBLIC PERCEPTION OF DISABILITY 

 

Q. So they are pushed to the front of the line, so to speak? 

 

A. Yes. So we have had quite an impact on policies, acts of Parliament and programs of 
government. Now, the other positive impact I would say is in the public. In our local 
language, whenever someone saw a disabled person, they would say that person is a 
�Cata Yamba� meaning someone who is helpless. Now people came to my office and 
said, �These days we had to add councilor,� because many disabled people end up on 
these local government councils. So the public had to change the language because when 
they meet a person with a disability they don't know whether they are talking to a 
councilor or any other person, so they no longer call them �the helpless people� but 
councilors. 

 

Q. The assumption is now that they are all councilors, where as before the assumption 
was they were all helpless? 


 

A. Yes. When I was elected to be a Member of Parliament in 1996, all of the technical 
offices had an education officer, and in the ministry where I work today, that person was 
addressing some government people and said, �We have to change our language. If you 
have always called people with disabilities 'helpless people,' how will you be able to 
continue to make this statement because now this Member of Parliament, she will be 
entitled to a vehicle, she will find you in the wind and may give you a lift. Now how are 
you going to tell others about a helpless person giving you a lift?� So that was interesting. 
So, not only it has created that positive attitude towards people with disabilities, it has 
also built a hope for people with disabilities, both the young and the adults. We have our 
leaders in there, they are in decision-making positions. 

 

Though not much has yet been achieved in local government councils, but at least where 
our representatives of people with disabilities are, and, if they have lobbying and 
advocacy skills, they've been able to lobby for budgets to ensure that people with 
disabilities are included in the programs at that level. Because when we make policies at 
the national level, we need to have people to help us follow up the implementation at the 
grass roots level. So the idea of having the councilors at the grass root and different local 
government levels is to be able to demand services, to be able to know the policies 
provide for what the program is supposed to do for people with disabilities. 

 

SKILLS TRAINING NEEDED 

 

The challenge at present is that many of our councilors [with disabilities] sometimes lack 
the skills of the other [non-disabled] members of the council. The council has about 15 
people, then there are two representatives of people with disabilities. They should be able 
to work hand in hand with the others on the local council so that when they are 
advocating for some provision at the local government level, they can be supported 
because there is also a small cabinet at the local government council. They have policies, 
but they also seek to draw ties to their local government. So we need to build the capacity 
of our people with disabilities, especially at the local level, so they can be able to demand 
budgets, to demand for services and to be able even to communicate to us at the national 
level on issues they feel are oppressive. Sometimes they do communicate, but sometimes 
they don't. 

 

ELECTION PROCESS IN UGANDA 

 

Q. When you were elected to Parliament, how did that work? Were you actually put on 
the ballot by your party? Or did you put yourself on? Tell me a little bit about how that 
election situation worked. 

 

A. The interesting part of Uganda is that since 1996, we have been under the movement 
system of government. It was an all-encompassing sort of movement because of the 


revolution, our divided parties hadn't worked well for many years. When the present 
President came in, he came with a vision of getting people united and so somehow we 
didn't continue multi-parties. We have been under one system, embracing the large 
parties who came in and the constitution provided that for ten years we'd be under the 
movement system of government. So under that we are all embraced, so there is no party. 
So we could only elect our own representatives. Disabled people had to be organized to 
elect their leaders to Parliament. 

 

Q. And did the party go to the disability organizations and ask them to give them a list 
of people to run for the Parliament, similar to the system used in South Africa by the 
ANC? 

 

A. Yes, but South Africa also had another party, Liberty. 

 

Q. Yes, but the ANC is the most powerful and they went to the disabled peoples 
organizations and said, �Give us a list of people who would be viable candidates.� And 
then they put them on the ballot wherever they were from. 

 

REGIONAL APPROACH TO FIVE DISABILITY SEATS IN PARLIAMENT 

 

A. No, for us we have five seats in the Parliament and it's up to people with disabilities to 
decide how we want to get our five members of Parliament. So we decided as people 
with disabilities that for the five seats, we are going to divide Uganda into four regions 
and then we shall decide what it will be for each region. Then we also said that one seat 
should be for women with disabilities, which would be contested for by women with 
disabilities only. The other four would be contested for by both men and women because 
we wanted to ensure that in Parliament we had both men and women with disabilities 
represented. So we organized Electoral Colleges. We get representatives from each 
district, so each district, when the time comes to elect a new MP, sends four people: one 
with a visual impairment, one with a physical disability, one with a hearing disability and 
one with any other disability. At that point, we meet in the capital city, Kampala, then 
they make an Electoral College, and it is through that we go and campaign. We come up 
with our manifesto and whoever is interested to serve as a Member of Parliament, he goes 
to campaign. If the disability people elect you, then you go, if they don't, whether you 
have support from government or not, then you don't. 

 

Q. The non-disabled members of the Electoral College do not vote for you? 

 

A. No, they are not supposed to. 

 

Q. So only the disabled people are allowed to vote for their representative. 

 


A. Yes. So they elect us to Parliament, and so as the women representative in Parliament, 
I'm supposed to immediately focus on issues of disabled women. So I work hand in hand 
with the others, but you know, I'm not limited to that. I have to also focus on national 
issues, but I should ensure that the issues of women with disabilities are not left out, so 
that's my immediate focus. But we are not limited to that, in fact one of us is the 
chairperson of one of the committees in Parliament that handles the economy of the 
country. So we are free to debate each and every thing like every other item in 
Parliament, just like any other Member of Parliament, we are not limited. 

 

WORKING WITH THE UGANDAN DISABILITY MOVEMENT 

 

Q. How does that work in terms of legislation that isn't necessarily perceived as a 
disability issue, but that would impact on people with disabilities? Let's say legislation 
about education or transportation? Would you automatically be sent white papers on 
any pending proposals or bills? Would the five Members of Parliament with disabilities 
be given all that or would you have to ask? 

 

A. I would have to ask for it. Now the disability movement in Uganda is very popular. 
Each and every other Minister knows that there's an organization, the National Union of 
Disabled Persons in Uganda, that's NUDPU, but they also know that there are the 
stakeholders, so, for example, right now the Minister of Transport, Communication and 
Housing is working on building a control bill in order to come up with laws on 
construction of buildings. So when they drafted the policy, they had to invite 
stakeholders, and they know very well that we have an interest in that. So my department 
was invited, and as a Minister I was invited to consultative meetings, but NUDPU 
officials, representing the NGO that is the umbrella for people with disabilities, was 
invited to that meeting and the Minister of Education because she also handles children 
with disabilities and other stakeholders were invited. So we had to look at the bill, at the 
draft bill, you know? We looked at it, made our comments, then the responsible ministry 
had to take it back, address our concerns and then go ahead to work on it, and after that, 
the bill is going to be presented to Cabinet. But after Cabinet it will come back to 
Parliament. So when they invite me, they also invite the other MPs to that consultative 
meeting. But if it comes out that they didn't take care of all the issues rendered at that 
consultative meeting, then it will be challenged. I mean, the MPs for people with 
disabilities will have another opportunity to ensure that their real concerns are taken care 
of. 

 

But disability awareness in Uganda, it really even impresses me. When it's time to debate 
disability in Parliament, I mean there's no �who has a disability and who doesn't have it.� 
The MPs themselves now �get it� because in their constituencies disabled people have 
come to them, because they don't wait for us only, they also go to the other Members of 
Parliament, because they vote for them, too. That's the advantage we have. We vote for 
our own Members of Parliament for people with disabilities, but we also vote for those 


other MPs in the communities where we live, so we have the right to go to them and say, 
�Please ensure that government does this and that.� 

 

DISABILITY SUPPORT AT HIGHEST LEVEL 

 

As a Minister responsible for disabilities issues, I'm interested in the level of awareness in 
the top leadership of the country. When the President met the leaders of people with 
disabilities, he said, �I have a sister who has a disability, but my father wanted to keep 
her at home so she could take care of the calves.� The father was worried that the 
daughter could fall on the way because the schools used to be far, unlike today because 
many schools have now been constructed. So their father was so worried about his 
daughter that he wanted her to stay at home, take care of the calves, you know? But the 
mother was strong, and the mother said no. She stood her ground and said, �My daughter 
should go to school.� The mother insisted that the girl had to go to school, now, she has a 
Masters degree. So the President is also very close to disability issues, and he knows that 
in Parliament disabled people are crucial. 

 

INTER-MINISTERIAL COOPERATION 

 

Q. Talk a little bit about your position now. How long have you been the Minister of 
State? 

 

A. Since August 1998. 

 

Q. And tell us a little bit about that position. How do you work with the other Ministries 
and also the disabled peoples' organizations? 

 

A. We have a big ministry called the Ministry of Gender, Labor and Social Development. 
Now in that ministry, there are different departments that are manned by Ministers of 
State. So that ministry has five Ministers of State and another Minister, called a Senior 
Minister. Within that big Ministry, we have a department which takes care of all persons 
with disabilities, that's the one I'm in charge of. Then there's another bigger one, another 
bigger department for children and youth. There's a Minister of State responsible for that. 
Then there's another Minister responsible for labor and industrial relations; and another 
responsible for culture and gender affairs. So those are different big departments within 
that ministry. 

 

Q. And you're all called Ministers? Each department head is called a Minister? 

 

A. Yes, a Minister of State. So within that ministry, we collaborate a great deal because 
we are all under one umbrella. So I know what's taking place with the children: they 
share with me information about what is going on, and I also share with them. We send 
information to each other so that we can at least know something that is happening with 


the other departments. Now, when it comes to other ministries, like the Ministry of 
Agriculture, Education and so on, mine is almost like an advocacy ministry, because I 
have the lead role of initiating policy on disability�if there is a need for a law, I have to 
initiate it. I advise government on disability issues and the concerns of people with 
disabilities. I manage a program and supervise by going to the local levels to see what is 
happening, and most especially in the areas of disability and the older persons' affairs. 

 

Now if, during my field visits, I find a program in some area, for example, if I find that 
the local governments are leaving disabled people out of government programs, I come 
back to my office and communicate to the minister responsible. I say, �In such and such a 
district, your department there does not provide for people with disabilities in this area.� 
In other words, I found such and such a problem, so you have to see about it as a 
ministry. Many times they go ahead and act and then they report to me. Or otherwise, 
they might write to me and say, �Ok, give us more information,� or something like that. 
And if they're coming up with anything policy or law or anything, we share with each 
other. All the ministries must get a copy, make their comments, then they send it back to 
the right ministry responsible for that particular program, policy or law. So that's how we 
work, but we also have Cabinet meetings. When you are presenting such papers, typically 
you are there in person, or if I'm not able to be there, then there is a Senior Minister there, 
because she works very closely with all of the specialized departments, so we have to 
brief her from time to time. 

 

REPORTING CHANNELS AND BUDGETS 

 

Q. You report directly to the Senior Minister of your ministry and then she reports to 
the President, is that the reporting structure? 

 

A. No, she reports directly to the Prime Minister and the Prime Minister reports to the 
President. We also have the full Cabinet meetings and they are chaired by the Vice 
President for the President. So they are supposed to be chaired by the President himself, 
but in his absence the Vice President chairs them. So in Cabinet we have an opportunity 
to report. 

 

Q. And do each of you have your own budget? Or do you go to your Senior Minister 
when you need money, or how does that work? 

 

A. In the budget, we are looked at as one ministry, so that there are budget lines for the 
different programs that we run. 

 

Q. Do you know what your operating budget is for your programs when you start your 
fiscal year�approximately how much money you will have that year to run your 
programs? 

 


A. Yes, but sometimes there are budget cuts. Also during the year, you can run out of 
funds because there wasn't enough revenue collected, so you aren't able to access the 
whole amount that you asked for. So that will also happen. 

 

Q. And I assume that the money comes from general revenues from taxation? 

 

A. Yes, and even some donations from partners in development. But, it has to be 
budgeted for by Minister of Finance that does the finances for all the different 
government ministries. We also get monthly releases. That's why I'm saying that 
sometimes for some months, you may go and they say, �We didn't get enough revenue so 
you aren't getting what you budgeted for.� So this affects the programs. 

 

PROGRAMS FOR ELDERLY PERSONS 

 

Q. Since you said you have the elderly and the disabled in you ministry, what's the 
breakdown percentage wise in terms of your budget? How much of your total budget is 
devoted to programs for the elderly, how much for the disabled since Uganda is 
probably predominately a young country, isn't it? Do you have a lot of elderly people? 

 

A. Yes, we do. According to the population in the Census of 2002, 6% of our population 
is elderly, 60 and above. But the funny thing is up until today, we have a minimal budget 
for the older persons. What happens is that the program of the people with disabilities has 
had some support from partners in development, or the donor community. But as for the 
older persons, I haven't succeeded to get that yet. I've communicated to different 
organizations, but it seems that they still feel that the African extended family can still 
take care of the older persons, which is not the truth. I mean, it's not the reality. Because 
the young people are not in the rural areas where they used to be to take care of their 
parents. Some of them have gone to other places to look for employment. Secondly, 
because of HIV/AIDS, the young people have died and left the older people with orphans 
in the rural areas. So the older persons, instead of expecting support from their children, 
sons and daughters, now have the responsibility of caring for their grandchildren in the 
rural areas. But I haven't been able to get people who are willing to support government 
in that area. And the government's budget hasn't been forthcoming. 

 

IMPACT OF HIV/AIDS 

 

Q. How big a problem is HIV/AIDS in Uganda? 

 

A. According to what they say, the statistics are that the level of infection has gone down 
because of the campaign. The President has been so open about it, and whenever he 
addresses any gathering, he reminds the population about HIV/AIDS. And there is a 
program for the youth and the children to get out the awareness raising. But of course the 
damage had also been caused earlier on from the 90's when AIDS came in the country. 


So, I mean, it has been derailed now, but it is a big problem because you go, we have 
many orphans in the country. It was one of the highest [of the African countries]�a lot 
of work has been done to reduce the problem. The rate of infection has really gone down, 
but what about those who had been infected before the campaign had begun, they often 
died. 

 

Q. How long has the campaign been going on? 

 

A. Since the President came to power which was in '86. 

 

Q. So he was warning people early on? 

A. Yes, he was warning people. But before '86, AIDS was around, the problem had really 
come so those who had been infected. And others of course who wanted to have affairs, 
in spite of all that awareness. Some people may not take it seriously, so there are also 
other infections. But the rate of infection has gone down. That's why it is talked about so 
much, and our President has just received an award from the U.S. for being open and 
fighting HIV/AIDS. But for other nations that never came out openly, they have a bigger 
problem than ours. 

 


 Selected Articles and Reports 
Published in DisabilityWorld 2000�2005: 
AFRICA 

 

 

The following lists selected news articles and reports from Africa, 
published in DisabilityWorld (www.disabilityworld.org) 2000�2005, 
documenting the rise of activities pertaining to 
disability and good governance in that region. 

 

 

 

 

AFRICAN REGION 

 

The African Decade for Disabled Persons: towards a common vision for people with 
disabilities 

By Charlotte Vuyiswa McClain, DisabilityWorld 17 (2003) 
. http://www.disabilityworld.org/01-03_03/gov/africandecade.shtml

 

The Office of High Commissioner for Human Rights very much encourages regional 
approaches in the protection and promotion of human rights. Regional cooperation for the 
equalization of opportunities for people with disabilities has been gaining momentum on 
the African continent. The Economic and Social Council, in paragraph 14 of its 
resolution 2000/10, encouraged international support for the African Decade of Disabled 
Persons to promote equalization of opportunities by, for and with persons with 
disabilities and to promote and protect their human rights. 

 

African Conflicts and the Disability Toll 

By Phitalis Were Masakhwe, DisabilityWorld 24 (2004) 
. http://www.disabilityworld.org/06-08_04/gov/conflicts.shtml

 

According to Rehabilitation International (RI), the African continent has over 80 million 
persons with disabilities today. With malnutrition, accidents, crime, diseases and all 
manner of violent conflicts prevalent on this continent, Africa risks yet another dubious 
distinction of being the place with the fastest growing number of persons with disabilities 
in the world. Probably one wouldn't mind about this scenario if Africa had sufficient 
mechanisms and systems to provide for the well-being and rehabilitation of those with 


disabilities. But does it? So why �manufacture� so many persons with disabilities whom 
we are so inadequately prepared to support and protect? What a waste! 

 

To start off, Africa does not have an African charter or convention on the rights and 
dignity of persons with disabilities. The majority of government and states in Africa have 
no clause in their constitutions or legislation and policies for the recognition and adequate 
protection of the rights of disabled persons. Disability and the concerns of people with 
disabilities are the least prioritized and inadequately factored section of the national 
budget and planning. Disability is still surrounded with a lot of guilt, shame, and stigma 
in most of African societies. 

 

 

GHANA 

 

Citizens with Disabilities Observe Ghana's National Elections: Individuals with visual, 
hearing and mobility impairments visit more than 300 voting stations in 4 regions 

DisabilityWorld 6 (2001) 

. http://www.disabilityworld.org/01-02_01/gov/ghana.htm

 

Seventy-seven Ghanaian citizens with disabilities were trained and recruited as fully 
credentialed election observers during the nation's Presidential and Parliamentary 
elections of December 7, 2000. This first-of-its-kind program is a part of a larger project 
of the International Foundation for Election Systems (IFES) to promote the electoral 
enfranchisement of people with disabilities worldwide. The governments of Sweden and 
Finland provided funds for this program. The observers will once again be deployed on 
December 28, 2000 for the run-off election between the two remaining presidential 
candidates. 

 

Ghana's Disability Community Presses for National Council 

By Kay Schriner, DisabilityWorld 12 (2002) 
. http://www.disabilityworld.org/01-03_02/gov/ghana.shtml

 

Disabled people in Ghana are resisting the government's proposal for a national advisory 
council in favor of their own proposal for a National Disability Council. The disability 
community argues that the government's proposed advisory body would have little or no 
power. Instead, they say that a national Council is required by the World Programme of 
Action concerning Disabled Persons of 1982 and the Standard Rules on the Equalization 
of Opportunities for Persons with Disabilities of 1993. Such a body would have executive 
powers. The government's proposed advisory council would have no such power; instead 
it would only advise the Department of Social Welfare, which is part of the Ministry of 
Manpower Development and Employment. 

 


Some in Ghana's Disability Community Threaten to Boycott 2004 Elections 

By Kay Schriner, DisabilityWorld 16 (2002) 
. http://www.disabilityworld.org/11-12_02/gov/ghana.shtml

 

The Public Agenda, a Ghanaian newspaper, reports that some people with disabilities in 
Ghana are threatening to boycott the 2004 elections because of the government's uncaring 
attitude about their problems. A. Rauf, a teacher at the Savelugu School for the Deaf, told 
a Tamale forum that unless the government addresses issues of importance to Ghana's 
disabled citizens, they may sit out the 2004 elections. 

 

Speaker of Ghana's Parliament Promises Disability Law 

By Kay Schriner, DisabilityWorld 17 (2003) 
. http://www.disabilityworld.org/01-03_03/gov/ghana.shtml

 

Peter Ala Adjetey, the Speaker of Parliament, said last month that he would secure the 
passage of a bill that would provide antidiscrimination protections and ensure access for 
people with disabilities from discrimination. Disabled Ghanaians feel the need for such a 
law because, despite the provisions of the 1992 Republican Constitution (which 
guarantees their rights), they continue to face significant barriers to social and economic 
equality. 

 

 

KENYA 

 

Kenya's President Questions Qualifications of Blind Professional 

By Kay Schriner, DisabilityWorld 10 (2001) 
. http://www.disabilityworld.org/09-10_01/news/kenya.shtml

 

In comments that have caused a �chorus of criticism,� Kenyan President Moi raised 
concerns about the ability of a blind man who is among those leading the nation's 
constitutional review team. The President, who spoke in Kiswahili, is quoted by The 
Nation as saying �Certain people are blind and yet you insist they should lead the 
constitutional review process. What message are you sending God? Here is a blind person 
offering guidance on constitutional matters. So much has been said but it will not distract 
me from seeking what is best for Kenyan youth.� 

 

Kenyan MP Calls for Government Disability Department 

By Kay Schriner, DisabilityWorld 13 (2002) 
. http://www.disabilityworld.org/04-05_02/gov/kenya.shtml

 

Josephine Sinyo, a blind member of the Kenyan Parliament, has called for the 
establishment of an independent government department to address disability concerns. 
Sinyo, who is also chairperson of the United Disabled People of Kenya organization, 


claims that policy reforms are necessary to help people with disabilities in Kenya. �We 
need strong government policies addressing specific disability problems,� she is quoted 
as saying in The Nation newspaper. A government department on disability should be 
staffed by individuals with disabilities, said Sinyo in her remarks at a workshop on child 
labor issues. 

 

Kenya Government Proposes New Voting Rules for Disabled Persons 

By Kay Schriner, DisabilityWorld 15 (2002) 
. http://www.disabilityworld.org/09-10_02/gov/kenya.shtml

 

The Kenyan Government has made a variety of proposals to change election procedures 
there. Among these is a proposal to allow blind people and others with disabilities to 
bring someone of their own choosing into the polling booth to assist them in voting. This 
is a change from current law, which specifies that an election official must assist such a 
voter. 

 

Disabled Hawkers in Nairobi Protest Government Crackdown 

By Kay Schriner, DisabilityWorld 18 (2003) 
. http://www.disabilityworld.org/04-05_03/gov/kenya.shtml

 

People with disabilities have been hawking their wares in the center of Nairobi for a long 
time, but Mayor Joe Aketch wants to end all that. He has banned all hawkers from the 
city center and in a move that infuriated disability activists, sent the City Council guards 
to break up a demonstration of disabled hawkers who had gone to State House Road to 
seek a meeting with President Mwai Kibaki. 

 

A View from Kenya on International Day of Disabled Persons 

By Phitalis Were Masakhwe, DisabilityWorld 21 (2003) 
. http://www.disabilityworld.org/11-12_03/gov/kenya.shtml

 

Distinguished guests, fellow persons with disabilities, ladies and gentlemen; I salute you 
all on this important day in the calendar of the esteemed United Nations. Ten years ago, 
the Security Council of the United Nations set aside the 3rd of December every year as an 
International Day in recognition of the more than 600million people with disabilities 
worldwide. The day was and still is, meant to galvanize national and worldwide 
consciousness and action with regards to those amidst us with various forms of 
disabilities. It is however unfortunate that this day is not well known and publicized as it 
should. Many Governments, Kenya included have not treated this day with the 
seriousness it deserves. Disability and the concerns of Persons With Disabilities are still 
lowly placed. 

 

Kenya: Report on Ambitious National Disability Conference 

By Phitalis Were Masakhwe, DisabilityWorld 22 (2004) 


. http://www.disabilityworld.org/01-03_04/gov/kenya.shtml

 

In January, Kenya hosted the first National Conference focusing on the African Decade 
of Persons with Disabilities, 1999�2009. Though a belated development, this conference 
should herald a new era for Kenyans with disabilities. Will it do that? For starters, what is 
the African Decade for Persons with Disabilities? What is its origins and goal? What is 
the expected outcome of the decade? Will it be another wasted decade? This decade has 
its roots and veins in the United Nations Decade of People with Disabilities. 

 

Towards Demystifying the African Decade of Persons with Disabilities, 1999�2009 

By Phitalis Were Masakhwe, DisabilityWorld 24 (2004) 
. http://www.disabilityworld.org/06-08_04/gov/africandecade.shtml

 

On 12 August 2004, a two-member team from the African Decade of Persons with 
Disabilities secretariat in Cape Town, South Africa was in Nairobi. The team led by 
Thomas Ongolo, himself a Kenyan, was on a review and study mission on how far Kenya 
had performed with regards to the African Decade National Action Plan. The team met 
and held frank and extensive discussions with the Kenya National Steering Committee 
for the Decade. Kenya has made substantive progress in the realization of the decade 
objectives and aspirations. Of course a lot still remains to be done. 

 

 

LESOTHO 

 

Lesotho Electoral Commission Plans for Voters with Disabilities 

By Kay Schriner, DisabilityWorld 13 (2002) 
. http://www.disabilityworld.org/04-05_02/gov/lesotho.shtml

 

With assistance from the government of Finland, the Lesotho Independent Electoral 
Commission (IEC) is moving to make upcoming elections more accessible to voters with 
disabilities. The IEC has assigned disability coordinators in all ten districts of Lesotho. 

 

 

LIBERIA 

 

Liberia: Call for Self-Representation 

By William Rowland, DisabilityWorld 23 (2004) 

. http://www.disabilityworld.org/04-05_04/gov/liberia.shtml

 

In the aftermath of the civil war, the disabled people of Liberia find themselves in dire 
circumstances of poverty and powerlessness. The war has also caused an increase in their 
number to 320,000, equaling 16 percent of the population. Blind persons alone number 
some 77, 000. �We must move disabled people out of welfare and into rights and 


development,� says Beyan Kota of the Christian Association of the Blind in Liberia. 
Interviewed on the BBC World Service, Kota said that various groups of disabled 
people�blind, deaf, physically and multiply disabled�had decided to join forces in the 
establishment of the National Union of the Organizations of the Disabled in Liberia. The 
politicians had failed them, he said, and now they demanded self-representation. �We 
want at least one seat in the Interim Assembly,� said Kota, President of the new Union. 

 

 

MADAGASCAR 

 

Disappointing Progress of Disability Rights in Madagascar 

By Fela Razafinjato, DisabilityWorld 25 (2005) 
. http://www.disabilityworld.org/09-11_04/gov/madagascar2.shtml

 

Since March 2000, an umbrella organization called the Collective of Organizations acting 
for Disabled Rights (COPH) has become a beacon of hope for disabled people, the 
mouthpiece for all public and private entities acting on behalf of people with disabilities. 
This year, the COPH has hired a legal consultant to conduct a study on the evolution of 
the rights of people with disabilities. Let us recall that there are two bills of law 
governing the world of the disabled in this country: Bill no. 97-044, which passed on 
February 2, 1998 followed by Order no. 2001-163, passed on February 20, 2001. 
Unfortunately, the results of the study have shown us that these two bills have yet to 
translate into any concrete action, whether by the ministry of Population or any other 
ministry. To this day, they remain at the level of broad declarations of principle, 
regardless of the proclamation of the national disabled people's decade. 

 

 

MOZAMBIQUE 

 

Mozambique Passes Law to Protect Workers with AIDS 

By Kay Schriner, DisabilityWorld 11 (2001) 
. http://www.disabilityworld.org/11-12_01/employment/mozambiqueaids.shtml

 

The two main political parties in Mozambique have joined forces to approve a law 
protecting the rights of employees with HIV/AIDS. Many employers there had routinely 
forced job applicants to take HIV tests and refused to hire anyone who tested positive for 
the virus. Mozambique's AIDS problem is serious. Estimates are that some 700 more 
people are infected each day, and the government believes that 400,000 people may die 
from AIDS related causes by 2002. Many of those infected are men working in South 
African mines. 

 


 

NAMIBIA 

 

Namibia to Undertake Disability Census in 2001 

DisabilityWorld 8 (2001) 
. http://www.disabilityworld.org/05-06_01/news/namibia.shtml

 

The government of Namibia is planning to undertake a disability census later this year. In 
February a preparatory meeting was held to review the findings of a pilot study on people 
living with disabilities in the Katatura section of the capitol city, Windhoek. The pilot 
study reviewed the survey that targeted approximately 500 households and involved 
extensive interviews with 113 disabled people over the course of three weeks. The survey 
was developed under the direction of Dr. Ben Fuller, Senior Research Fellow of the 
University of Namibia. 

 

First disabled person included in Namibian political party's parliamentary list 

DisabilityWorld 26 (2005) 
. http://www.disabilityworld.org/12-02_05/gov/briefs.shtml

 

The National Federation of People with Disabilities' secretary general, Gerson 
Mutendere, recently resigned from the position he has held since 2000, following his 
nomination on the Congress of Democrats' parliamentary list and presented to court and 
the Electoral Commission of Namibia. Mutendere is the 11th on the Congress of 
Democrats' list of 72 aspirants to the National Assembly and the first disabled person to 
be included in a political party list. 

 

Namibia Provides Special Ballot for Visually Impaired 

DisabilityWorld 26 (2005) 
. http://www.disabilityworld.org/12-02_05/gov/briefs.shtml

 

The Electoral Commission of Namibia is providing Braille ballot papers to enable blind 
Namibians to cast their votes for the first time without any assistance from poll officials 
in the upcoming parliamentary and presidential elections planned for November. Until 
now, blind voters had to depend on their relatives or close friends to assist them to cast 
their votes. With the compilation of special ballot papers in Braille, visually impaired 
Namibians can exercise their democratic right to vote in secrecy. The Electoral Act of 
1992, Act No. 24 states that every individual Namibian has the right to cast their votes in 
secret. Those who cannot read Braille may still bring along a friend or a relative to assist 
them in casting their votes. 

 


 

NIGERIA 

 

International Conference on Disabled Children in Nigeria Finds Lack of Services 

by Paul Ejime, Pan African News Agency Correspondent, DisabilityWorld 2 (2000) 
. http://www.disabilityworld.org/April-May2000/Governance/InternatlConf.htm

 

An international conference on disabled children in Nigeria has called for the setting up 
of a national commission on disabilities. The three-day conference decried the neglect of 
people with disabilities by the government and civil society. Noting that this amounted to 
a great loss of human talent and productivity, the conference communique said that this 
had been compounded by the negative attitudes, beliefs and apathy of the Nigerian public 
to the plight of disabled children. 

 

 

SOUTH AFRICA 

 

South Africa Re-drafts Anti-Discrimination Law 

DisabilityWorld 1 (2000) 

. http://www.disabilityworld.org/March2000/English/Briefly1legis.htm

 

Up against a constitutional deadline of February 4, South African politicians worked 
throughout January to finish fine-tuning the Promotion of Equality and Prevention of 
Unfair Discrimination Bill. The bill bans discrimination on the grounds of race, gender, 
sex, pregnancy, martial status, ethnic or social origin, color, sexual orientation, age, 
disability, religion, belief, culture, language and birth. One point of contention is whether 
or not people with HIV/AIDS will be covered. 

 

Focus on Wilma Newhoudt-Druchen 

World Federation of the Deaf News, DisabilityWorld 3 (2000) 
. http://www.disabilityworld.org/June-July2000/Governance/Focus.htm

 

WFD Board Member Jacobus (Kobus) Kellerman chats by e-mail with the Honourable 
Wilma Newhoudt-Druchen, member of the South African Parliament. 

 

South African Parliamentarian Sees Improvements 

By Kay Schriner, DisabilityWorld 9 (2001) 
. http://www.disabilityworld.org/07-08_01/gov/southafrica.shtml

 

�We have to be ourselves, and are not bound by the party,� says disabled South African 
Member of Parliament Hendrietta Bogopane. In a recent interview with the Johannesburg 
Mail & Guardian newspaper, MP Bogopane talked about her eight years in Parliament. 
Blind since birth, Bogopane experienced first-hand the difficulties of living with a 


disability in South Africa and had been a long-time activist before she was elected to the 
national assembly. 

 

South Africa: Disability Pensioners Win Back Benefits 

By Kay Schriner, DisabilityWorld 10 (2001) 
. http://www.disabilityworld.org/09-10_01/news/southafrica.shtml

 

The Supreme Court of Appeal for the Eastern Cape province of South Africa recently 
ruled that disability pensions should be immediately restored to tens of thousands of 
individuals. The province had discontinued payments to almost 100,000 beneficiaries 
between 1996 and 2000 and required all to re-apply for coverage, citing the high costs of 
the program and the problem of fraud. 

 

Disabled South Africans Protest New Benefits Criteria 

By Kay Schriner, DisabilityWorld 11 (2001) 
. http://www.disabilityworld.org/11-12_01/il/southafrica2.shtml

 

People with disabilities in South Africa marked the International Day of Disabled Persons 
on December 3 by asking the government to suspend its implementation of strict new 
criteria for accessing social assistance grants. In a memorandum to Deputy President 
Jacob Zuma, Disabled People of South Africa (DPSA) expressed their serious concerns 
with the new evaluation process, which DPSA fears could leave disabled people without 
a safety net. The South African Federal Council on Disability (SAFCD) also complained, 
saying that the government is more concerned about controlling expenditures than about 
the well-being of people with disabilities. SAFCD says that people with sensory, 
neurological, and mental impairments may not be granted benefits because of the 
inadequacy of the evaluation process, and that its recommendations for improving the 
system have been ignored. 

 

Governance and Legislation in South Africa: a contemporary overview 

By Charlotte Vuyiswa McClain, DisabilityWorld 12 (2002) 
. http://www.disabilityworld.org/01-03_02/gov/southafrica.shtml

 

South Africa is an emerging constitutional democracy. Our Constitution is billed as one 
of the most progressive Constitutions in the world. It is a Constitution that reflects the 
struggles faced by the majority of South Africans. A wonderful document that outlaws 
discrimination on grounds of race, gender, sex and disability. A constitution that is 
founded on the fundamental values, of equality, freedom and non-racism. The inclusion 
of disability in the equality section of the Constitution is a result of the relentless struggle 
that people with disabilities waged during the oppressive apartheid regime. It is a result 
of organised disabled people who fought to be heard and who mobilised to achieve this 
victory. 

 


South Africa: Forcing Open the Doors of Delivery 

By William Rowland, DisabilityWorld 12 (2002) 
. http://www.disabilityworld.org/01-03_02/gov/southafrica2.shtml

 

�Umkhonto we Sizwe! Umkhonto we Sizwe!� It is the name of the armed wing of the 
ANC; these are also the words of a freedom song. The bus bounces up and down wildly 
as the youths stamp their feet and sing; it is a day of celebration and the joy of the people 
is unbounded. We de-bus and become part of the human mass converging on 
Johannesburg's FNB Stadium. �Freedom come, freedom come; freedom come, through 
the barrel of a gun!� The words of the singing comrades thunder through the loudspeaker 
system as we wrestle our way to our seats, Carla Zille and me. The disability movement 
has been part of the political struggle, like the women's movement, the churches, the 
trade unions, and many other groups�and we are all here to receive the liberated leaders. 

 

Democracy & Disability in South Africa: Still Three Nations 

By Charlotte Vuyiswa McClain, DisabilityWorld 14 (2002) 

. http://www.disabilityworld.org/06-08_02/gov/southafrica.shtml

 

The ushering in of a new democracy in 1994 was billed as a miracle. For the majority of 
South Africans it was their first time ballots were cast for a government of their choice. 
This exercise of political franchise brought hope, pride, and huge expectations. But for 
many this miracle had a long and painful history. A history characterised by inequality, 
discrimination, torture, abuse, segregation, exclusion and deprivation. The victorious 
national liberation struggle negotiated our democracy based on human dignity and 
equality. 

 

Interview: Fadila Lagadien, South African Activist 

By William Rowland, DisabilityWorld 16 (2002) 
. http://www.disabilityworld.org/11-12_02/gov/lagadien.shtml

 

Taking her lessons from the struggle years in South Africa, Fadila Lagadien has carried 
her activism into the boardrooms and negotiating chambers of our new democracy. 
However, she has some disturbing things to say about how things are today. 

 

South Africa Social Development Minister Calls for End to Discrimination 

By Kay Schriner, DisabilityWorld 16 (2002) 
. http://www.disabilityworld.org/11-12_02/gov/skweyiya.shtml

 

In an address commemorating the International Day of Disabled Persons on December 3, 
Dr. Zola Skweyiya, South Africa's Social Development Minister called on South Africa 
to end discrimination against people with disabilities. Skweyiya also called for a 
comprehensive national effort that would include improving access to services and 
promoting social, economic, and political opportunities for people with disabilities. 


 

South Africa: Leveraging Legislation and Policy to Make a Difference for Disabled 
Persons 

By Mark Richards, DisabilityWorld 21 (2003) 
. http://www.disabilityworld.org/11-12_03/employment/southafrica.shtml

 

In 1994 Nelson Mandela took the reins as leader of post-apartheid South Africa. As a 
result, a generous amount of legislation was passed to reintegrate blacks into society and 
its economy. �Special levies were imposed to fund training and education programs for 
people who had been denied education under apartheid,� writes Nicole Itano, in an article 
for the Christian Science Monitor. She points out that now �companies were required to 
set employment goals for disadvantaged groups and submit plans showing the 
government how they planned to meet those goals . . . Companies are now legally 
obligated to meet disabled employment quotas, usually set at about two percent of the 
workforce.� 

 

South Africa: National Disability Conference 

DisabilityWorld 25 (2004) 
. http://www.disabilityworld.org/09-11_04/gov/access2004.shtml

 

In 2004 South Africa will celebrate a decade of democracy�Access 2004 is planned to 
coincide with these celebrations. The conference program will explore the effect 
democracy has had on people with disability especially in terms of access to ensuring 
equal participation in and benefit from mainstream society. Access 2004 will ensure that 
disability related planning, development and implementation as per the Integrated 
National Disability Strategy and Integrated Provincial Disability Strategy remain 
relevant. One of the biggest challenges is still to ensure that disability becomes and 
remains part of mainstream development, planning and implementation. Relevant 
presentations and exhibitions complimented by vibrant discussion and debate will be 
attended by government and decision makers, sector professionals, academics and 
institutions, the corporate sector and the disabled community. 

 

 

TOGO 

 

Disability Rights Initiative Launched in Togo 

DisabilityWorld 18 (2003) 
. http://www.disabilityworld.org/04-05_03/gov/briefly.shtml

 

According to a letter to the Editor of Disability Tribune, a publication of the U.K.'s DAA, 
Togo has begun an initiative towards developing disability rights legislation. The 
Togolese Federation of Associations of Disabled People (FETAPH) led a group of NGOs 
in launching the initiative called �Project Right of Disabled People in Togo.� FETAPH 


has produced a preliminary rights document with the Togolese Minister of Social Affairs, 
of the Advancement of Women and the Protection of Childhood, has met with the Prime 
Minister and awaits the support of other key Togolese authorities. 

 

 

UGANDA 

 

Disabled Members of Parliament Wield Influence in Uganda 

By Kay Schriner, DisabilityWorld 1 (2000) 
. http://www.disabilityworld.org/March2000/English/uganda.htm

 

After a long period of political turmoil, Uganda has attained a status that is perhaps 
unique among nations. Its new constitution, written in 1995, requires that five of the 
national members of Parliament have disabilities�thus making Uganda worthy of the 
world's attention as it implements this experiment in political representation. Thousands 
of other disabled people have been elected at all levels of the government. The five MPs 
in the national Parliament include The Honorable Alex Ndeezi, The Honorable Florence 
Nayiga Sekabira, The Honorable Hood Katuramu, The Honorable James Mwandha, and 
The Honorable Margaret Baba Diri. According to Uganda News (June 26, 1996), they 
�join 39 women, 10 soldiers, five young people, and three trade unionists in reserved 
seats in the new 276-seat parliament� and were chosen from 26 candidates by 156 voters 
from across the country who made up the electoral college for the disability posts. One of 
these MPs, The Honorable Florence Naiga, has been appointed to serve as the Minister of 
State for Elderly and Disability Affairs. 

 

Ugandan President Travels with Sign Language Interpreter 

By Kay Schriner, DisabilityWorld 3 (2000) 
. http://www.disabilityworld.org/June-July2000/Governance/Ugandan.htm

 

New Vision, a Ugandan newspaper, reports that Ugandan President Yoweri Museveni is 
traveling with a sign language interpreter to �cater for the deaf� during his campaign to 
pass a referendum concerning political systems in Uganda. Ugandan voters will soon be 
deciding whether to adopt a multiparty system, or to continue the �Movement System� in 
which representation is based on interest groups. The election is scheduled for June 29, 
2000. 

 

Disabled Woman Wins �Ordinary� Seat on Ugandan Council 

By Kay Schriner, DisabilityWorld 12 (2002) 
. http://www.disabilityworld.org/01-03_02/gov/uganda.shtml

 

Margaret Ongodia, a disabled woman in the Ugandan Katakwi District, won an 
�ordinary� seat on the district council�though she could have run for a �disability� seat. 
Uganda's constitution requires that a certain number of lawmakers be elected to represent 


groups such as women and people with disabilities. At the national level, Uganda 
reserves 5 parliamentary seats for disabled persons, and governing bodies at the sub-
county and district levels must have two individuals with disabilities. But Ongodia chose 
to run for an ordinary seat. Arguing that disabled persons can represent all citizens, not 
just persons with disabilities, she is quoted by the New Vision newspaper as saying �We 
can stand just like anybody else!� 

 

Disabled Ugandans Questioned on Need for National Council 

By Kay Schriner, DisabilityWorld 17 (2003) 
. http://www.disabilityworld.org/01-03_03/gov/uganda.shtml 


Members of the Ugandan Parliament studying the committees related to social services 
and equal opportunities have asked the Minister for People with Disabilities, Nayiga 
Sswkabiro, to say why there is a need for a National Council for people with disabilities. 
The disability community in Uganda has asked that a Council be established that would 
have structures at district and sub-county levels. 

 

 

ZIMBABWE 

 

Zimbabwe Government Calls Disability �Core Development Issue� 

By Kay Schriner, DisabilityWorld 13 (2002) 
. http://www.disabilityworld.org/04-05_02/gov/zimbabwe.shtml

 

In a new policy, the government of Zimbabwe has released $200 million for disability 
programs to indicate its commitment to its disabled citizens. According to Angeline 
Masuku, the national secretary for the ruling party's Welfare of the Disabled and 
Disadvantaged, the party has determined that disability issues should be recognized as 
core development issues, not simply matters of charity to be left to charitable 
organizations and non-governmental organizations. 

 

Zimbabweans Call for New Laws, Better Political Representation 

By Kay Schriner, DisabilityWorld 18 (2003) 
. http://www.disabilityworld.org/04-05_03/gov/zimbabwe.shtml

 

Out of frustration with the government, media, and society, disabled Zimbabweans are 
calling for changes in the nation's laws and systems of political representation. Chief 
among the complaints made by Zimbabweans who have disabilities is the inability of 
people with visual and hearing impairments to access information about AIDS. Roseweta 
Mudarikwa says that this lack of information is putting at risk the lives of disabled 
people. 

 


 

 


* This article originally appeared in DisabilityWorld 24 (2004), 
http://www.disabilityworld.org/06-08_04/gov/georgia.shtml 

 

 
Protection of Disabled People's Rights 
in Georgia: Highlights 1988�2004 *

 

By George Kokhreidze, former Member of Parliament, Republic of Georgia 

 

 

 

 

 

 

 

The breakup of the former Soviet Union, internal military conflicts, and disruption of the 
social environment in the 1990's caused quite a significant increase in the number of 
disabled people in Georgia. Experiments, carried out in the governing of the country's 
political and economical life, created after-effects, such as corruption, and lack of 
organization. Most of all, these negative consequences have greatly affected the 
unprotected population of disabled people. 

 

During these years the necessity of protecting the rights of disabled people became clear 
and nongovernmental organizations of disabled people were founded and became active. 
The creation of disability NGOs, supported by international organizations, has played a 
significant role in protecting the legal rights of disabled (and not only disabled) people. 

 

GROWTH OF NGOS 

 

The first NGO of disabled people in Georgia, the �Association of Disabled People� was 
founded in 1988. Then the Sports Federation of Disabled People was set up in 1990 and 
attracted many active participants due to its specific focus, and because sport is 
considered to be one of the best means of rehabilitation for disabled people. With the help 
of the Sports Federation, some disabled persons while participating in different programs 
abroad, gained experience and became knowledgeable about programs and laws 
protecting human rights and started fighting for the rights of disabled Georgians. In the 
beginning, although there were only a few activists, they managed to take disabled people 
out of their houses and encourage them to participate in different competitions (arm-
wrestling, chess, draughts, backgammon, table tennis, marathons, water skiing, mountain 


climbing, etc). In addition, they developed cultural events in the communities and 
educational programs on TV. All of these activities were carried out with great 
enthusiasm and were based on personal interests. 

 

In 1995 the �St. Queen Tamar Order of Veterans and Handicaps� and the �League of 
Disabled People� successfully lobbied for legislation on the social protection of disabled 
people. The sponsors of this legislation, with financing from the British organization, 
�Oxfam,� traveled throughout Georgia and held a congress nine days before the adoption 
of the legislation. On 14 June 1995, Parliament adopted the legislation on social 
protection of the disabled people and in October Parliament also adopted legislation on 
the social protection of veterans. Organizations of the blind and organizations of the deaf 
became active. After the adoption of these laws, the number of disability NGOs increased 
more than the activity of the disabled people. Privileges that were contained in these laws 
were also conferred on other unmotivated groups through different resolutions, decrees 
and instructions through an over-use of political lobbying, thereby resulting in the abuse 
of these privileges. Therefore after six months, all of the above-mentioned legislation, 
including the law about disabled people, was cancelled. The cancellation of these laws 
lasted 18 months and those disability organizations that truly represented and united 
disabled people really suffered a lot. 

 

In 1995�1996 the League of Disabled People, with the help of foreign partners, created 
many new jobs for disabled people. According to the assessment of international 
organizations, it proved to be the most active disability NGO in the Caucasus region 
during those years. 

 

The successful programs of the League of Disabled People resulted in a Presidential 
decree, which ordered all State Departments to enforce each clause of the law about 
social protection of disabled people within its competence. Unfortunately the President's 
instructions were not fulfilled and therefore the necessity of uniting the efforts of all 
disability NGOs became apparent, since everyone understood that together they could 
achieve more. 

 

SUCCESSFUL CIVIL ACTIONS RESULT IN NEW LAW 

 

On 14 December 1996 the Coordinating Council was founded, which consolidated the 
work of 22 disability organizations in a well-defined campaign for their rights. On the 
same day representatives of the League of Disabled People started a hunger-strike, which 
after 3 days, resulted in an agreement between Parliament and the Coordinating Council 
that the rights of disabled people would be considered in approval of the Federal Budget. 
In June 1997, the Coordinating Council had to organize another hunger strike, since the 
government was not fulfilling its obligations. After two years of struggle, in 1998 a State 
Budget law was adopted with language declaring that any disabled person who wishes to 
live an active life can integrate into society. 


 

From 1998�1999, while operating under constant unfavorable conditions from State 
functionaries, the law more or less worked for eight months. In July 1998, when State 
structures started stealing money from the accounts of disabled people, the Coordinating 
Council again had to conduct another hunger strike to focus the attention of the society 
and government. That action was only partly successful with some of the money being 
returned to the disability organizations and legal efforts continuing to demand the return 
of all the money. 

 

ACCOMPLISHMENTS WHILE STATE BUDGET LAW WAS ACTIVE 

 

In support of an active life for disabled persons program; the roads in six districts of 
Tbilisi were adapted for accessibility; 15 adapted buses were imported; a production shop 
of wheelchairs and subsidiaries were created where disabled people were employed and 
about 1000 wheelchairs produced. Approximately 100 wheelchairs were imported from 
abroad. Using active-type wheelchairs and with the help of local and foreign instructors, 
100 persons received two weeks of mobility training, 15 of them received certificates as 
�active life� instructors. Regional organizations were established and some State finances 
were assigned to them. 

 

NEW SERVICES, BUSINESSES & ACCESS TO ASSISTIVE TECHNOLOGY 

 

Nowadays, these organizations have become quite strong lobbies to the local authorities. 
Disabled persons with hemophilia have been provided with the necessary medical 
supplies. Approximately 20,000 walking-sticks and crutches have been imported. Seven 
teams of amputee football players were founded and the national team has won 4 th place 
in Manchester, England. Three wheelchair volleyball teams of wheelchair disabled 
people were created; and two world champions emerged in arm-wrestling (Cairo). In 
addition: two integrated nurseries were founded; about 50 conferences and seminars were 
held on different topics, two Special Olympic games were organized with various 
educational programs for the parents of disabled children; three integrated art schools 
have been launched; construction standards have been prepared for creating an accessible 
environment; educational literature for disabled people has been translated and printed; 
two studios have been established, where disabled children learn art; directory address 
computer software has been created, in which disabled people were involved and these 
software programs are now being used by official organizations and private persons; 
three businesses for the blind and two businesses for the deaf have started operating, 
three businesses for people with mixed disabilities have been established; two Charity 
concerts have been held; for blind children audio educational material has been made; 
200 disabled children have received computer literacy courses; and 200 deaf children 
have received hearing aid equipment. 

 


IMPROVING ACCESS TO GOVERNANCE, DEMOCRACY & EDUCATION 

 

In addition, representatives of the Coordinating Council have visited across the civil war 
conflict zone and established working relationships and provided assistance to local 
disability NGOs. Compared with the 1995 elections, 55% more disabled people took part 
in the 1999 election. Since 1999, disabled people do not have any problem in continuing 
their studies at high schools and a de-institutionalization program for disabled children 
has been started. 

 

INCREASED ACCESS TO MEDICAL REHABILITATION AND ASSISTANCE 

 

Some 15 surgical operations at an approximate cost of $ 25,000 have been carried out 
abroad and more than 200 operations have been carried out in Georgia. Ten inexpensive 
(approximately $2000) surgical operations were conducted in Yerevan, Armenia and 20 
persons were sent to the Crimea for rehabilitation. At least 40,000 children in eastern and 
western Georgia received free medical screening and 40 of those children received urgent 
operations. More than 15,000 disabled persons received some financial help. 

 

LACK OF PUBLIC AWARENESS MAKES PROGRESS VULNERABLE 

 

Unfortunately the Georgian public was not informed about these successes in the lives of 
disabled persons. This lack of public awareness in our society was exploited by a group 
of people who were interested in abolishing the law, and they successfully conducted a 
public relations effort to restrict the activities of disabled people's NGOs. 

 

By the year 2000, the economic tools of the Federal Budget law, which were used to 
create many programs for disabled people, were abolished. However, because Disabled 
Persons had their own representative in the Parliament, they continued to have the right 
to initiate new legislation. A representative of disabled people's organizations was 
managing the subcommittee of Georgian parliament responsible for the affairs of 
disabled people. Even with a disabled representative in Parliament during the year 2000, 
none of the proposed legislative initiatives was successfully brought to the floor from the 
committee meetings. A draft Disability law, which was signed by 178 deputies, was not 
even debated in the open Parliament session. 

 

The majority from the ruling government party has ignored the law on �protection of 
social rights of disabled people� and unfortunately this situation continues today. It is 
nothing but the discrimination of disabled people. Parliament has to discuss these matters, 
since it is a democratic institution and to have democracy and discrimination together is 
impossible. �If one country has both, discrimination and democracy at the same time�it 
is discriminated democracy...� (From Parliament session, 2000) 

 


SOME INROADS MADE IN SPITE OF SETBACKS 

 

Despite the successes and failures, 1998�1999 were very important years in the life of 
disabled people in Georgia and many disabled persons became active in this period. 
Additionally, part of the unmotivated public has started thinking about the problems of 
disabled people, sometimes due to the economic hardships, sometimes with sincere 
compassion. This is a real breakthrough in Georgian mentality. Disabled people could be 
seen in the streets, in transport, cafes, theatres and cinemas, stadiums and other gathering 
places. Disability organizations have gained important experience and quite expanded 
intellectual resources. As a result they have been quite successful in their activities, even 
though there was no support in the year 2000 and very little support in 2001�2003 from 
the State. During these three years using their own resources and sometimes with the help 
of international organizations, they have adapted 10 secondary schools, carried out 
integrated and inclusive studies and created an integrated swimming pool. The 
Coordinating Council member organizations have participated in 30 international 
seminars and conferences. One more integrated nursery was established and the 
remaining materials from the wheelchair production activity have been used to create 50 
wheelchairs. Some 10 sporting events have been held and 250 children have undergone 
computer training, including special training for 25 blind children. For the children with 
limited hearing, a school of enunciation has been founded and teachers are undergoing 
training in Croatia. 

 

Due to the activity of the NGO sector and with our lobbying efforts during the Budget 
process of 2001, a micro-projects competition for the employment of disabled people 
resulted in the funding of 40 programs with small grants (each GEL 25,000). Many 
previously unknown and inactive disabled people have participated within those 
programs. 

 

FOUNDING OF COORDINATING COUNCIL, NEW LAWS & RESOLUTIONS 

 

In 2001, through the initiative of NGO organizations of disabled people, Parliament 
adopted a resolution to establish a Coordinating Council under the President within two 
months. The aim of establishing this Coordinating Council was to have a consulting body 
to the President, which would encourage the government to carry out its policy towards 
disabled people based on the recommendations of the active disabled population. 
However, it took more than one year for the government to fulfill this resolution and on 8 
May 2002, the Coordinating Council was founded. Since then, it has played an important 
role in establishing anti-discriminatory policy on the basis of disability. In 2003, four 
anti-discriminatory laws and the President's five resolutions have been adopted. 

 

In June 2001 after eight months of discussions, the legal term �invalid� was changed to 
�disabled person.� The reason for the change of legal term was that people with 
disabilities need equal opportunities and despite our economic hardships, the 


international laws on human rights have no exceptions for any country. The law of social 
protection of disabled people unifies similar principles. During the same Parliament 
session clause 32, which was abolished in 1997, was reestablished and the new version 
was better than previous one! 

 

On 7 December 2001, Parliament adopted the law concerning medical and social 
appraisal. According to this law, restrictions on the employment of persons with 
disabilities have to be defined not only from the medical point of view, but also from 
equal opportunities. The new law has eradicated the legal terminology, �incapable of 
work.� Therefore many employment restrictions, where incapability for work was the 
reason to fire person, have been abolished. This was very important. With this advance in 
the right to employment for persons with disabilities we can think about various types of 
insurance, such as insurance against disability. 

 

COALITION FOR INDEPENDENT LIFE FORMED 

 

According to the Parliament's resolution of 2001, on 8 May 2002, the national 
coordinating council under the State Secretary was founded. In the summer of 2002, the 
coalition of non-governmental organizations of disabled people and veterans (Coalition 
for Independent Life) was founded, which aims at supporting independence and welfare 
of disabled people and veterans in Georgian society. 

 

Main activities of the Coalition: 

� Support of disability organizations whose activities are directed towards 
protection of the legal rights and opportunities of disabled people. 
� Destroy stereotypes about disability and disabled people and to establish positive 
public opinion through public awareness campaigns. 
� Support the integration of disabled people and their family members into the 
country's political, economic, social and cultural life, and their participation in the 
policy decisions regarding disabled people. 


 

The philosophy of independent life, which is the basis of the coalition, directs disabled 
people to set the policies and activities of the coalition for themselves. 

 

Independent life�it means to make independent choices, to take risks, make mistakes 
and make decisions. Independent life�it is the person's right to be an integral part of 
active social life and participate in their country's social, political and economic 
processes. To have the free choice and option to use residential and municipal buildings, 
transport, communications, insurance, employment and education. To become really 
independent, a disabled person has to overcome many difficulties. These difficulties 
could be visible (e.g. architectural surroundings) or invisible (people's attitudes). If we 
eradicate these difficulties, it will be possible to make the first step, to live a life of full 
value, to work and have a family, to raise children, to participate in sports or politics etc. 


 

On 14 November 2002, the Coalition organized a legislative forum where a package of 
anti-discriminatory draft laws and anticorruption ideas were presented to the invited 
government representatives. It was for those that disabled persons would participate in 
anticorruption and anti-smuggling activities, which would help save the State hundreds of 
millions of GEL. During the second forum held on 2 May 2003, the government 
expressed its readiness for the execution of the project. 

 

CHANGE OF GOVERNMENT IN 2003 

 

After the peaceful overthrow of the government in December 2003, called the �Rose 
Revolution,� new government officials have assumed control and this project has 
temporarily stopped. 

 

As a result of the Coalition's activity, the State budget of 2003 implemented several 
disability integration programs with the direct participation of disability organizations. 

 

NEW PROJECTS 

 

State program of 2003 

 

Today the Coalition, within the State program of 2003, entitled �Support to social 
adaptation of disabled people,� carries out six different projects: 

� Informing society about the matters of disabled people; 
� Supporting integrated education; 
� Supporting independent life of disabled people; 
� Supporting participation of disabled people in cultural and creative activities; 
� Supporting participation of disabled people in sports events; and 
� Social rehabilitation of disabled people and veterans and the prevention of 
disability. 


 

As a result of the Coalition's activities, a President's resolution announced June 14 as a 
day of protection of the rights of disabled people. On that day a concert sponsored by the 
coalition served as a background for the activities celebrating the event. Anti-
discriminatory supplements to the criminal code and administrative code, which entered 
into force on 1 December 2003, are also credited to the disability NGOs. At the same 
time supplements to the law on building construction have been adopted, mandating that 
construction carried out for accessibility is free from taxation. These developments have 
improved disabled people's legal conditions. 

 

New emphasis on accessible democracy 

 


In summer 2003, the Parliament adopted changes in the election code in order for blind 
persons to be as independent as possible while voting. Election materials were made 
accessible to them by being printed in Braille. For deaf persons a public campaign is to 
be carried out by special translation. For persons using wheelchairs, the law requires easy 
access at electoral districts: 

 

...If within electoral district there are disabled people, who are using wheelchair and they 
have addressed election committee not later than 25 days before voting day, the 
committee is obliged to provide temporary, easy access for them (Clause 50, Article 2) 

 

...If within electoral district there are blind people and the information about them is 
given to election committee not later than 45 days before voting day, committee is 
obliged to prepare part of ballot-paper with special technology, that allows voters to fill 
them independently (Clause 51, Article 2). 

 

...While broadcasting information about election campaigning, State TV companies are 
obliged to give the above sound information using special technologies for the people 
with limited hearing (Clause 66, Article 4). 

 


* This article originally appeared in DisabilityWorld 26 (2005), 
http://www.disabilityworld.org/12-02_05/gov/begginterview.shtml 

 

 
Breaking Taboos, Retiring Myths, Raising 
Expectations: an interview with Anne Begg, 
Member of the U.K. House of Parliament 
from Aberdeen South, Scotland *

 

By Ilene Zeitzer, conducted on June 16, 2004 via telephone 

 

 

 

 

 

 

 

Q. What do you think has been the main impact of having you as a person with a 
disability in an elected position of power? You had your disability before you were 
elected, is that correct? 

 

A. Yes, that�s right. I�ve been in a wheelchair for 20 years. Since the condition I have is 
genetic, I was born with it, but my mobility started to be restricted when I was 16. So I�ve 
lived with my disability. I think that probably the biggest impact [of my being a MP] is 
that it breaks the taboo, the taboo that says that if you�re blind or deaf, you can�t possibly 
be a Member of Parliament. David Blunkett [Home Secretary] had broken that taboo 
about blindness, Jack Ashley [Member of the House of Lords] has broken the one about 
deafness. For me, if you�ve got a mobility impairment, then the myth is that you can�t 
hold down a very high pressure job. My constituency is over 500 miles away from 
Westminster, so I�m flying up and down every week. So it shows that someone with my 
kind of physical impairment can still lead an incredibly busy life and do the kind of 
traveling I do. You know, I�m just the same as anyone else, so there are no great 
problems. So that�s the main impact, I think; more than anything, it shows it can be done 
and it�s up to other people with disabilities to come in and do it too. 

 

HOW DISABILITY EXPERIENCE HAS SHAPED HER ROLE AS AN MP 

 


Q. Regarding the disability agenda, I saw that your Web site has references to a draft 
disability bill and a report on employment for all. Do you feel that your having a 
disability leads others to give more weight to what you have to say on disability issues? 

 

A. When I was first elected, I was actually quite keen not to be seen as the disabled MP 
and, if anything, I probably shied away from even talking about disability issues. First of 
all, I tried to build a reputation for being an effective MP on behalf of my constituents 
who are not disabled, but who are the people who live in my district in Aberdeen. So the 
only way I could do it was by not becoming a mouthpiece for disabled people. I�ve been 
very keen to avoid that label because disabled people are not a homogeneous group, 
we�ve all got different views, different aspirations, different expectations and that often 
one person can�t speak on behalf of all disabled people. However, that having been said, 
the longer I was an MP, the more I realized that obviously I had an expertise and a 
knowledge that many others didn�t have, and I would be doing a disservice to large 
numbers of people if I didn�t speak out from my own experience. 

 

I do find that, especially when I speak on disability in Parliament, that people do listen 
and do take what I say more seriously because it�s grounded in a personal experience that 
no one can really challenge, I suppose. And so gradually I have gotten more and more 
involved in disability issues, and especially in the areas of social policy, particularly 
getting disabled people into jobs. My interest is in social inclusion anyway, so, I suppose 
in pursuing that agenda I�ve made an effort to speak out on behalf of disabled people, to 
remind people that there are disabled women, for example. The reason I was in the 
Chamber on Monday was to remind people during the debate on the domestic violence 
bill that there are disabled women who have particular needs. These needs may not 
necessarily have been addressed by the agencies involved because they hadn�t thought of 
disabled women as a distinct group that needs specific help, different from the help that 
other victims of domestic violence might need. 

 

Q. It has been a problem in the U.S., particularly for women in institutions or with 
developmental disabilities who are quite often the victims of the people who are 
supposed to be helping them. 

 

A. That�s right. And that is the point�it�s very hard to get out of that situation when the 
person who is the perpetrator of the violence is in charge of your care. And the bill that�s 
going through the House of Commons at the moment does talk about vulnerable adults, 
and that would cover adults who have learning disabilities, but somebody like myself 
would not be described as a vulnerable adult. Yet there�s no reason, if I were married, 
that I wouldn�t necessarily be vulnerable to domestic violence as well. People from all 
walks of life, who to the outside world might seem very competent, holding down an 
important job and so forth, may still be victims of domestic violence when they go home. 
And how does someone in a wheelchair leave a home which has been adapted to her 
needs? These are the kind of issues I wanted to raise. 


 

HOW PARLIAMENT RELATES TO DISABLED MEMBERS 

 

Q. Are you the first Member of Parliament who has had a disability? 

 

A. No, the former MP, Jack Ashley is deaf. He was elected as an MP and then became 
deaf, so he was the first deaf MP. He�s now in the House of Lords. 

 

Q. But he developed his disability after being elected? 

 

A. I think he was elected first, yes. I�m not sure of the medical background, but I think he 
must have been hearing at one time because the longest serving MP once said [in a 
conversation we had] that one of the things he feels most proud of was when Jack 
developed his deafness and was telling some of his colleagues that he thought he�d have 
to give up being an MP, others said to him, �No, don�t, you owe it to the deaf community 
to prove that you can do it� so Jack stayed on as an MP until he retired and then was 
given a place in the House of Lords. 

 

Q. So you�re probably the first person [in the U.K.] who had a disability beforehand 
and then was elected to office? 

 

A. Yes, I�m the first person to have been a full-time wheelchair user before being elected. 
Now obviously, MPs can get quite old, and some have acquired disabilities through 
aging, but I�m the first really full-time user of a wheelchair that�s been elected to the 
House of Commons. There are three with previously existing disabilities in the House of 
Lords, but, of course, the Lords aren�t elected. So I�m the first that actually had to face an 
election and that was another taboo that was broken because people said, �Oh, they won�t 
elect someone who�s got a disability.� Well, I had no problem being elected. I�ve still got 
a very marginal seat, and yet I have to say I think my disability is more likely to keep me 
in my seat. It�s been a positive advantage rather than any kind of disadvantage. The 
people know me; they recognize me. I�ve got a nice short name as well, which helps. And 
so I get publicity. We have a government with a huge majority, you know, so all of our 
MPs are struggling to get any kind of recognition. But it�s been really easy for me; I 
haven�t had to work very hard at all at getting publicity. 

 

REDUCING PHYSICAL BARRIERS IN PARLIAMENT 

 

Q. When you were elected, did they have to make any physical changes to the 
Chamber? Was any of that a problem? 

 

A. There wasn�t a big problem. They had been gradually upgrading the building over a 
number of years, I think, so by the time I was elected there already was access to most of 
the main areas. One of the glories of the building at Westminster is the terrace along the 


river, and that had already been ramped. I think the fact that there were people in 
wheelchairs in the House of Lords also helped. Our House of Commons doesn�t have a 
sunken area; it�s flat, and I just sit in the front row, so that wasn�t a problem. But I�m now 
a chairperson, I�m a member of something called the Chairman�s Panel, and we�re 
appointed by the Speaker to act as Deputy Speakers on committees and things, and they 
of course have platforms that the chairman has to get up on, so that was a bit of a 
scramble because they had to come up with some ramps for me, but they�ve managed to 
do it. They�ve got portable ramps that have managed to get me onto all of the platforms 
in the various committee rooms. It�s actually turned out to be easier to get onto the ramps 
for chairmen than it sometimes was to get into the main part of the committee seating 
areas, because our committee rooms have a lot of fixed furniture and clearances weren�t 
quite wide enough. It was okay when I was pushing myself around in my old self-
propelled wheelchair, but now I�ve got a big electric one that the House of Commons 
provided after the last general election. 

 

The other thing that happened was that the present Speaker of the House of Commons, 
before the 1997 general election, was then chairman of the Ways and Means Committee 
and, as such, was responsible for the physical aspects of the building. We met at a 
conference in March of 1997, two months before the election, and he said, �How�re you 
doing? Is it likely that you are going to win? I said, �It�s looking really good.� And he 
said, �Well, at the moment we can�t do anything because there�s a sitting Member there 
but as soon as we have a better idea, will you write to me with a list of what you think 
you might need, just so we can be forewarned before you�re elected?� I had no idea what 
I would need but I guessed I�d need an office quite close to the Chamber and close to an 
accessible toilet. I also knew I would need a comfortable chair that I could get my feet up 
in (I have an electric chair that I sit in to do my work). So I put as many of these things as 
I could down on a sheet of paper. The first day I arrived after the general election, I got 
shown around into this wonderful, huge office that most MPs only dream about. So I was 
lucky in that respect. 

 

PARTICIPATION IN PARLIAMENTARY COMMITTEES 

 

Q. Do you get to choose the committees you serve on, or are you appointed? And in 
either case, do any of them reflect your interest in disability issues? 

 

A. It�s a bit of both. You actually get appointed. If you�ve been very disloyal and such, 
then you�re probably not necessarily going to get on the committee of your choice. But I 
wanted to be on the Work and Pensions Select Committee, which deals with the 
Department for Work and Pensions (where the Minister for Disabled People is located), 
and so that was my choice and I got it. With regard to bills going through the House, it�s 
sort of common practice that if you want to sit on the committee dealing with a certain 
bill, you just let the folks know that you�re interested. There�s no guarantee that you�ll 
get on it, but any time that I�ve expressed an interest in a bill with regard to disability, 


I�ve always been appointed to the committee. And there�s a group of us in the House of 
Commons that have a particular interest in disability, so there�s a group of us you�ll often 
find on the same committees. 

 

INTERACTION WITH NON-DISABLED COLLEAGUES 

 

Q. What impact has having a disability had on your non-disabled colleagues in 
Parliament? Do they come to you for advice on those specific issues? 

 

A. Well, sometimes. A lot of them will have their own expertise as well. I think it�s more 
for quick advice that they�ll come to me because they know I�ll know the answer off the 
top of my head. That�s probably maybe more true of my Aberdeen colleagues because all 
the constituency staff, we�re all in the same office, so they�ll nip through and say, �Well 
how does the DLA (Disability Living Allowance) work?� because I�m more likely to 
know that kind of information off the top of my head. But I would approach them in the 
same way concerning any area of expertise they might have. I�m not conscious that many 
of my colleagues come to me specifically with disability issues. They have to deal with 
their own constituents because we have a practice that if it�s a problem being faced by 
one constituent, then the constituent�s MP has to deal with that. They can�t fob them off 
onto someone else. That protects us all, and that�s actually quite useful because people do 
write to me thinking that I�m the Minister for Disabled People and say, �I�ve got a 
problem getting my car parked outside my house, what am I going to do about it?� Those 
kinds of issues I pass back to their own MP because it�s up to them to deal with it. 

 

WEIGHING IN ON BROADER ISSUES 

 

Q. What about broad based issues, you know, transportation across the board for all of 
the U.K.? Is there a thought that they should come to you and have you weigh in from 
your perspective? 

 

A. Sometimes, but not too often. I think that depends on the issues. As I mentioned 
earlier, I was speaking on domestic violence the other day. Now that�s not an issue I�d 
been involved with at all until one of my colleagues suggested we address the problem 
with regard to disabled women. But I hadn�t even thought about it. And so she passed on 
the information she had and then I got my Member staff to do some more research on my 
behalf. So I was involved in that debate at the suggestion of one of my colleagues 
because she knew that my speaking on that particular subject would give it a bit more 
weight. So that does happen. 

 

But a lot of the briefings and the help we get comes from various charities and lobbyists. 
Well, we don�t have lobbyists the same way that you do in the States, but for example, 
take Bert Massie, the Chairman of the Disability Rights Commission; his office will 
always provide us with briefings on these kinds of issues. Their Parliamentary Officers 


will write to me and a number of others because they know we�re interested if they�re 
looking to get someone to put down an amendment or a motion or whatever. There are a 
number of organizations that know that I�m a sympathetic MP with regard to getting 
issues addressed, and that helps me as well because that gives me a source of 
Parliamentary work, too, so, it�s mutual support. But, professional lobbyists, no. We�re 
really very unprofessional lobbyists in this country, it�s organizations or charities who 
will have their Parliamentary Officers and things like that. They are a very useful source 
of information for us because they know, they can give us case examples and they�re 
extremely useful in keeping us well informed. Part of the way our democracy works is 
that any one of my constituents can come down to Westminster and lobby me. That�s the 
way it�s meant to work and unfortunately because there�s big business and the paid 
lobbies have got in the way, it�s become a bit sullied. But it still works in the way it�s 
meant to work with the organizations and the charities. 

 

MAJOR AREAS OF IMPACT 

 

Q. Do you feel that there�s been quantifiable progress in certain areas of concern, such 
as employment or education, for people with disabilities? Can you point to 
achievements in that respect? 

 

A. Yes, it might be useful if you�ve got access to the Internet to go on to the House of 
Commons Parliamentary Record (www.parliament.uk), the Hansard, for last Thursday, 
that�s the 10th of June (go to �Comments� section, first two hours not on disabled issues, 
but after that all discussion is on disability). There�s a whole debate about disability and 
you get the whole history of what�s happened with regard to Parliament and disability, 
and I contributed to it�Our first disability law was enacted by the last government with a 
notable lack of enthusiasm, and it had all sorts of deficiencies, such as a lack of any 
enforcement mechanism. So the first thing we did was set up the Disability Rights 
Commission so that we could actually enforce the rights that the 1995 Disability 
Discrimination Act (DDA) created. But there were all sorts of areas that were left out: 
Education was one. We plugged that gap with the Special Education and Disability Act, I 
think, in 2000, that basically brought education under the DDA and it also set up how we 
would deal with people with special educational needs, as well. That provision only 
applied in England and Wales, but not in Scotland, which has recently been granted more 
autonomy in the area of education.. The other provision (bringing education under the 
DDA) applied throughout the U.K. (although the Scottish parliament is still responsible 
for deciding how that mandate will be carried out in Scotland). 

 

GOAL FOR IMMEDIATE FUTURE: MORE FOCUS ON EMPLOYMENT 

 

Q. As far as your personal goals are concerned, what do you want to do to achieve 
those goals, particularly your goal of improving the quality of life for people with 
disabilities? 


 

A. At the moment, we�re expecting a general election next year, and getting reelected is 
one of my personal goals, so, because I have a marginal seat, I have to keep working on 
that. Currently I�m putting a lot of effort into getting disabled people into employment 
and trying to lower the barriers that are keeping people out of work, as well as making 
sure that workers who become disabled are either given another position by their former 
employer or helped to find an appropriate job elsewhere instead of automatically being 
told, �Sorry, you�re not well enough to do this job so go off and live on benefits for the 
rest of your life.� I find that totally unacceptable. So it�s about rehabilitation, 
occupational help as well as getting people who have perhaps worked in the past but who 
have been sitting on incapacity benefits for years and years. You know they might have 
had a bad back 15 years ago, and now their back is alright but they�re clinically depressed 
because they haven�t worked for 15 years. So it�s about trying to build up their 
confidence and getting them as much support as we can to get them back into the job 
market. 

 

Initially people in the disabled community were very suspicious (of efforts to get people 
back to work). They thought it was just about government trying to get people off of 
benefits in order to cut costs. But they�ve been generally won over, provided there�s no 
coercion and it�s done in a sensitive way and the support is there. That is happening and 
more and more people are getting jobs; people themselves are the best indication of 
whether the system is working or failing. I�ve been to a number of conferences and 
seminars to persuade employers to take on people who are presently on incapacity 
benefits, and the most poignant stories have been from people themselves who have 
benefited by getting back into the workplace. They describe the feeling of wellbeing that 
they get from again being back and part of society. So, it�s still got a long way to go, but 
we�re not running away from it. 

 

I�ve been in Holland looking at the things they�ve been doing and they�ve got a big 
problem in the numbers that they have. They almost are putting their heads in the sand 
and pretending it doesn�t exist. But I think there�s a huge social cost in just leaving 
people on incapacity benefit just because they can�t do the job that they were in before. 
We had very high unemployment; over three million, and it was easy for the government 
to massage the unemployment figures by shifting people off of unemployment benefits 
and onto incapacity benefits. 

 

So the numbers of people on incapacity benefits at that time went through the roof and 
the numbers of unemployed did come down by a lot. It was quite a cynical political ploy. 
That group of people are still sitting on incapacity benefits and I say, true, they might not 
be fit to be a miner or a shipyard worker anymore, but there were plenty of other jobs 
they could have done had they been encouraged to at the time, but now they�re clinically 
depressed. So, it�s not that they�re not ill, or that they�re not disabled, they most certainly 
are, but because they�ve been out of work for such a long time, it�s far, far harder to even 


persuade them that there are employers who might want to take them on. They [disabled 
persons] �have gotten used to living on a very low income and not doing any work. But 
they could be doing all sorts of other things. So it�s about saying, �Yes, there�s something 
you can do� but, at the same time, not appearing to coerce people, because otherwise the 
headline is �Sick and Disabled People Forced to Work.� It�s not the kind of headlines the 
government wants, but sometimes, it�s about getting the balance right. You sometimes 
have to coerce people a wee bit more to build up their confidence and say, �Well, why 
don�t you try it?� But, as I say, there�s still a long way to go, but at least we�re moving in 
the right direction. 

 

But we�ve probably gotten more generous with our welfare system anyway. But we�ve 
also changed it; we�ve given people a year�s leeway. In other words, people can get back 
on benefits at the same level they left if their attempt to work falls flat. We�ve also got 
something called the Disabled Person�s Tax Credit, the �working tax credit� that ensures 
that people are better off in work. Part of the problem for disabled people particularly is 
the benefits trap. The level of our benefits was high enough that if people went to work 
and lost all of the benefits, they were actually worse off, so we�re trying to deal with that. 

 

Mental illness is actually becoming the disability area of most concern. We�ve actually 
gotten quite good about getting people with physical disabilities, and even people with 
learning disabilities, into work, but I don�t think we�re well equipped to serve the needs 
of those with mental health problems; the solutions needed by somebody with a mental 
health problem are totally different from those needed by a person who�s got a physical 
impairment. I think this issue is going to become more serious as the number of claimants 
of incapacity benefits who have mental health problems continues to rise. But it�s 
something we�re going to have to face in the next 10�15 years. 

 

BUILDING EXPECTATIONS OF A SOCIETY FOR ALL 

 

Q. What are your thoughts on how to make government more attractive to individuals 
with disabilities and how to promote the need to create a society for all? 

 

A. I think if there was an easy answer to that, more people would be doing it. I think it�s 
becoming easier simply because people with disabilities are now accessing mainstream 
education, they�re growing up in mainstream society, they have expectations of getting a 
job. So, it�s just a matter of time when more disabled people have expectations that are 
the same as other people who want to be politicians. I�m not against affirmative action, 
but I think it�s important that people get involved who really want to get involved, rather 
than being forced into it; I don�t think that that would work. 

 

The best hope is that because we have changed society, people with disabilities will now 
have expectations of doing what other people do. We must make sure that barriers do not 
exist within the [political] parties themselves that actually prevent people with disabilities 


from putting themselves forward and being elected. The electorate will elect somebody 
with a disability, that�s proved, that�s happened. So, it�s not a barrier to being elected. 
The barrier is getting to the first stage, which is to become candidates for some of the 
main political parties. It�s up to the political parties to get their own houses in order. It�s 
up to those of us who are in politics to encourage others with disabilities and it�s up to the 
political parties not to discriminate against them in their selection process. 

 


* This article originally appeared in DisabilityWorld 25 (2004), 
http://www.disabilityworld.org/09-11_04/gov/massie.shtml 

 
�The agenda should be set by disabled persons, 
not by employers, not by ministers:� 
an interview with Bert Massie, 
Chair, U.K. Disability Rights Commission *

 

By Ilene Zeitzer, conducted during the 
Rehabilitation International World Congress 
in Oslo, Norway June 2004 

 

 

 

 

 

 

 

Q. You are in an appointed position, is that correct, not an elected one? 

 

A. Yes, I was appointed by the Secretary of State. 

 

Q., You're Chair of the Disability Rights Commission. How long have you been in this 
position now? 

 

A. I was appointed from January 2000. 

 

Q. Are all the people on the Commission appointed or are some elected? 

 

A. First of all it's open competition, because the way in which public appointments work 
in the U.K., they have to follow certain principles to ensure they're open, that there's no 
favoritism, no cronyism. Whether that goes on, of course is another thing, but that's what 
the principles are designed to prevent. The posts are advertised, you have to apply for 
them, and then there are interviews by civil servants, always with an external examiner to 
ensure the civil servants are being fair. So, at all interviews at that level, there's always 
going to be somebody who is not involved in the process, is just simply there from the 
outside appointed by the Office of Public Appointments. Then the civil servants will 
make one or two, maybe three, recommendations to Ministers from which they may 


choose the person they want to appoint. Then, in the case of the Chair, that also has to be 
approved by the Prime Minister. So, it's civil servants first, short list, then the Secretary 
of State, usually it's passed by the Union Minister with direct responsibility, and once the 
Secretary of State has agreed, it then it has to get the Prime Minister's approval. The term 
of office can be between three and five years, very seldom more than that. A successful 
appointment, if they wish, and the government wishes, can be appointed for a second 
term. But after that, the post has to be re-advertised. So they can reappoint without re-
advertising for one term, after that it must be re-advertised. For Commissioners, there is a 
similar process depending on the particular body, either the chair is involved in issues or 
not. With the DRC, we put up a choice of names to Ministers, and at this point, it's the 
departmental Ministers who make the decision, and the length of the appointment. 

 

TERMS OF COMMISSIONERS 

 

Q. They make the decision of the length of the appointment, too? 

 

A. Yes, it's not normally controversial, it's usually a three-year term. When the DRC was 
starting, some got one year, some got two, some got three. When the people got two 
years, they could be reappointed, and many of them were in fact, but we didn't want all 
the commissioners leaving at the same time. We want to stagger their terms. Also you 
have to look at the balance of the Commission. We are required by law to ensure half the 
members are disabled people. In fact, currently we have two-thirds. But we also need to 
have representation from employers and from other parts of society and there's only 15 
Commissioners, including the Chair. So people need to wear more than one hat, and 
you're looking for a particular type of candidate, and then, of course, although we're not 
meant to have people with particular impairments, we make sure we've got somebody 
with a hearing impairment, mobility disability, or mental retardation�to use the 
American phrase. We've got a lot of Commissioners with mobility impairments, and 
Commissioners with a history of mental illness; that doesn't cover all the impairment 
groups of course, there are lots of other things. So Commissioners have to have a broader 
vision than their own impairment. 

 

Q. Who generates the short list of names (for Commissioners)? 

 

A. First of all, there would be an advertisement for Commissioners in the national press, 
so anybody can apply. The civil service would normally weed out those who don't meet 
the job description we've set. And I would come in at the stage where it's been reduced to 
about 40 people, because we're appointing three. And then I would be with the civil 
servant leading this, usually a civil servant about Grade 5, which is the lower rank of the 
senior civil service, so clearly you reach the decision making process at the civil service, 
the operational part, and an external examiner. An external examiner is there at every 
point to make sure that I'm not appointing my friends, or I'm not selecting someone for 
inappropriate reasons, and the civil servants are there to do the same. And then we would 


get it down to three people to interview. So there's three people we would be looking to 
interview out of nine people�so we have a choice of three for every post, and if we don't 
find the right people, we can re-advertise. But we would hope to be able to put up more 
names to the Ministers than there are vacancies. And sometimes you make very strong 
recommendations of one person over another, but ultimately it's the Minister who 
decides. So we can make the recommendations, and there's the chairman on the panel 
doing that. And I can if I wish make my views known to Ministers, but the decision is not 
mine. 

 

Q. When you say the Minister, you mean the Departmental Minister, not the Prime 
Minister? The Chair is the only position the Prime Minister needs to agree to�
correct? 

 

A. Yes. 

 

Q. So, if you were appointed in 2000, then next year (2005) is the end of your first 
term, is that correct? 

 

A. No, my first term expired in April 2004, because I only asked for a four-year term, 
because I planned to retire then. I planned to do four years to get it going, and then hand 
it over. But there's a new change in the U.K., where they're going to amalgamate the 
Commission for Educational Equality, the Equal Opportunities Committee, a 
Commission which deals with gender issues, and the DRC, and also expand the role to 
cover age, sexual orientation, and belief systems�religions. So we're going to have one 
major Commission, which they think will start around 2007. So I accepted another term 
appointment until 2007 when I retire. 

 

GOVERNMENT PLAN TO COMBINE EQUALITY COMMISSIONS 

 

Q. How do you feel about the Commissions being combined? 

 

A. The first proposals by the government issued on this were, at the most, half-baked. In 
fact, I don't think I'd say half-baked, I don't think they'd been in the oven at all. They 
would have produced a complete hodgepodge, which wouldn't have worked. Essentially, 
they wanted to put everything together and put one person over it and say, �Well, you 
don't need disabled Commissioners and we're all integrated now and we're all fighting for 
a common cause.� The problem with that view is that for most discriminated groups, 
they're fighting the attitudes or the behavior of the people. Disabled people are also 
fighting the whole environment, and it's much different. The solutions are not simply 
about being nice to people. In fact, many people who try to be nice to disabled people 
will still get it fundamentally wrong. So, we thought that disabled people had to keep 
control of the disability agenda. 

 


When these proposals came out, of all the commissioners, I was the only person who 
objected to them and said, �Look, this has not been thought through properly.� The DRC 
then did a lot of lobbying, campaigning, to make our case and we were successful in that, 
and so the new body now will have guaranteed in law, at least one disabled 
Commissioner. It will have a committee in which half the members must be disabled, and 
that will run the disability policy as a new organization. What I've not got on board yet, is 
a disability unit properly resourced and staffed to forward toward that. And some of the 
other groups are saying, 'Why should disability have this when we don't have it?� My 
first response here was to say, �All groups should have these sorts of arrangements.� But 
the government was disagreeing with it, and some of the groups said they didn't want it. 
And so I said, �Well fine, you do what you want. I'm fighting this for disabled people, 
and if we don't get this for disabled people we will pose this right to Parliament.� 
Governments, by and large, don't want to pass a law claiming to help people, when the 
people they are claiming to help are campaigning against it. It makes the law look as 
though it's not quite as good as Ministers are saying it is. 

 

So we think that we probably salvaged quite a lot of it. Some disabled people in the U.K. 
believe quite strongly, if you're going to have a commission for equality and human 
rights, then disability should be in there, they should be separate, and there are lots of 
common causes. One of the debates has been that disabled people have multiple 
identities�that they're disabled, they're Jewish, they're Black, they're Lesbian or Gay. I 
say, �No, people don't have multiple identities, they have many facets to one identity, and 
this is confused thinking.� If you can't go down steps because there's no lift or elevator 
then it doesn't matter if you're a Muslim, it doesn't matter whether you're a Hindu. What 
matters is that you're in a wheelchair and you can't get down the bloody steps, that's what 
matters! You have to really analyze where the problem is, and I think a lot of thinking 
around this is really very fuzzy. 

 

One of the things I found frustrating in this debate is how many people have not taken the 
time to really think through the issues as deeply as they should be thought out. Now when 
the government is trying to write its white paper and they've written the white paper 
which reflects the DRC's position much better now. But they want to start writing a bill, 
so groups are coming out saying, �No, this is not going to work for Black people.� And 
some of the Black groups are rebelling, and of course as I said in the first place, it's also 
got to work for Black people. So it's still a lot to play for, but I suspect there's sufficient 
political commitment and obviously a big pressure to have something and to get it 
through while the government is open to doing it, because their view is if government 
changes, the new government might not be as committed. So, there's lots of pressure to 
do it, and I think the ministers will ultimately respond to that pressure. What I've got to 
do is make sure that whatever happens, disabled people at least are protected. 

 

BUDGETARY IMPLICATIONS 

 


Q. Do you worry that it will be a competition for the budgetary resources in the sense 
that you'll be pitted against ethnic minorities and the elderly and aging discrimination? 
Do you think that it will be everybody trying to fight for the same pieces of pie? 

 

A. If you go on to our Web site, I've had a couple of speeches on that. I've already written 
about that enormous issue that I see as going to be a competition because the current 
Commissions spend something like 45 million pounds between them. The Commission 
for Racial Equality (CRE) has the biggest budget of over 20, we're coming up to 17 
million and it could be 20 by the time 2007 comes. All the other Commissions are having 
their budgets reduced, and the DRC is the only one which is still expanding. Then again, 
as we argue to government, we've got a lot more to do. I mean, they've being going for 25 
years, we've been going for only five. One of the purposes of this organization is to 
promote social harmony throughout society�nothing like having ambitious ambitions. 
I've said it can't possibly do that if it has social disharmony within and it will have social 
disharmony if everyone is fighting for resources. So I've asked for a budget of 100 
million and my guess is we'll get something like 55, which will automatically mean there 
will be strife within. 

 

ENFORCEMENT POWERS 

 

Q. Right now you do have enforcement powers�you can try persuasion but you can 
also bring people to court, isn't that so? 

 

A. We can on the civil rights legislation but not on the human rights legislation, and that's 
made it difficult for us in representing people in health services because it's civil rights, 
like access to shops, restaurants, employment issues, you can find a comparator. You can 
say had this person not been disabled, they would be treated in one way and because 
they're disabled they're treated in an alternative way, which is less favorable. Then you 
say, well, that breaks the law so you can bring enforcement powers to bear, we have a lot 
of enforcement powers, both through the courts, the tribunals, and also we do formal 
investigations. 

 

We also have a dormant power on human rights, which the government has gone ahead 
and introduced. It's in the Act, so all the Minister has to do is sign it off, and they refuse 
to do so. And that makes it very difficult to take cases in the health services where you're 
talking about people's right to dignity�to lack of humiliation�and in many cases the 
health services do treat people with appalling indignity and arrogance and while it's not 
necessarily the everyday experience in health services, it happens sufficiently frequently. 

 

INVESTIGATION OF BIAS IN HEALTH SERVICES DELIVERY 

 

Our next formal investigation, which we're launching in the autumn, is on how the health 
service caters to people who have learning disabilities, who tend to die much younger 


than other people. That can't always be related to their intellectual impairments, and quite 
obviously if they go to the doctor and they've got a pain, and the doctor says, �Well, 
you're imagining it� and it turns out they've got cancer. Now, somebody without an 
intellectual disability would be treated with more respect by the doctor, a pain is a pain. 
Somebody with an intellectual disability is as capable at indicating that as anybody else, 
so why do we distrust their view of their pain and assume it's psychological? You can 
imagine how people with a history of mental illness are treated if the history of mental 
illness is on their file. It probably means that all their symptoms are ignored because we 
automatically look for an emotional reason for the symptoms they're displaying, when 
there could be a physical one. So we can investigate this, but we can't actually bring 
cases. I can do the investigation, but I can't bring legal cases because we don't have the 
human rights powers. The new body, where the government should be actually doing 
this, they've been saying, �Well, we've believe this can be done by education and 
persuasion.� If it can be done by education and persuasion, and the government wants a 
change, why not give it legal power? All they say is that legal powers don't bring change, 
in which case why don't they change the Treasury rules so they have to persuade us to 
pay our taxes? But they don't do that�they have strong laws. You've got to pay your 
taxes or you go to jail, so there's ambiguity certainly in the government's reasoning. 

 

FUTURE ABILITY TO BRING CIVIL SUITS 

 

Q. When this new Human Rights Commission is embodied and it becomes the process 
or the way, will you still have the ability to bring suits that are civil rights based? What 
was the DRC's ability? 

 

A. We are insisting that they have it. First of all, the government was saying that, well, 
they wanted this to be a new Commission, which worked with people and is cooperative. 
But the DRC does all that anyway; we have good relations with employers. But there 
comes a time when, like with Ryan Air, the airline, where you just knew they were doing 
wrong. We asked them to do it right; they ignored us. They said this law doesn't apply to 
us. They were charging people who needed to borrow a wheelchair to take the people 
through the airport. And they said, �Well, we're not charging. It's a handling charge. It's 
the airport who charges.� Whereas every other airline plays advocate, so Ryan Air was 
being a bit disingenuous to say they weren't charging and if a disabled person buys a 
ticket on Ryan Air then there's duty in that, and we took them to court to battle to prove 
that. Now, Ryan Air is appealing, and we're fighting the appeal and I think we'll win that. 
But there are some people who are so determined to discriminate. There's only the law, 
and the power of the law to stop them. And for governments to believe that all this is 
about kindly people who are just need an education�is na�ve. Of course there are people 
who are kindly and fit that stereotype. That's fine, you can work with them. But there's 
people who don't [get it]. 

 


NEW COMMISSION'S CHALLENGE WILL BE TO EQUALIZE THE RIGHTS 

 

The other problem the new organization is going to face is, that if you are going to set up 
a new organization, which this government seems intent to do, you would think the one 
thing you'd do is equalize the rights. But they're not even doing that. The three new 
strands of age, sexual orientation, and belief systems will only have a form of advice. So 
if a disabled man in his 90s who is a Muslim is turned away from a nightclub where he 
wants to go dancing all night, he's got no rights because he's 90, the people at the night 
club can say, �We like young people at our night club. You're a bit old for our night club, 
mate.� There's no right if he's turned away. And the fact that he's a Muslim, there's no 
rights. And so if he says, �Well, I've got Arthritis, you can't turn me away because I've 
got Arthritis,� it's not the basis. So, one of the main reasons for bringing them together to 
rationalize anti-discrimination legislation, the government is not taking...And that's why 
disability needs to be kept separate for a bit so while the other bits are all fighting for 
what they've obviously got to fight for, disability will split that agenda. And that's why 
we've fought so hard with the government to keep the disability strand which they will 
keep for at least five years before they review it. And they said they will build that into 
the legislation because we were promised that, and I said, �No, promises are no good to 
me. Ministers come and go. I want it in the law.� 

 

POWER TO SUE, BUT PRESSURE NOT TO USE THE POWER 

 

Q. But in terms of being able to sue for civil rights with the new Commission, you 
haven't won that yet, is that correct? 

 

A. They are letting us sue for civil rights but they're being told it's not a power they 
should use very often. And they were also saying in the early discussions that it was all to 
be strategic. Well strategic is a word that is trotted out when, by and large, people don't 
know what they are talking about�you know, it means whatever you want it to mean and 
it's one of those nice words which is elastic. So there are some times, certain cases, they'll 
say, �This is fundamentally wrong, and we've got a lot of people doing this� so that 
people will get the message. It's not that strategic. A blind person goes into a restaurant 
with a guide dog, and is banned because the restaurant doesn't take dogs, now that is just 
against the law, no question. But because it was the restaurant industry, we had to bring a 
few cases. Now they weren't big, strategic cases, they didn't go to the House of Lords, 
they didn't create massive case law, the law is quite clear. Any sort of High Street 
solicitor could have taken them, but they wouldn't because they wouldn't meet any cost, 
so we took them. So you take a few, and the restaurant industry gets to know that if 
you've got guide dogs, you got served. And then the message gets through, and that's very 
persuasive. You know, there's times when you just have to litigate. And they do advise 
you that you have powers to do it, but the pressure would be on not to use it, but my 
suspicion is if they have these commissioners, they would insist on using it. In fact, if 
they disagree on everything else, one of the dangers, is they might struggle finding 


agreement on some of the other issues that the result is that litigation has become the 
lowest common denominator. That's one thing they can agree on, and that's the danger. 
They will need a very powerful Chair, whoever they choose to chair this new 
organization. It's not going to be an easy task. 

 

GOVERNMENT'S RATIONALE IN ESTABLISHING ONE COMMISSION 

 

Q. What was the government's rationale in trying to do that�apart from the talk about 
being one big, happy family? In reality, was it a budgetary thing or something else? 

 

A. Well, no, I think that there are a number of reasons. One I suspect is there's a belief 
that the EOC and the CRE perhaps need another way of living, because they've been 
around for 25 years, and governments don't like things lasting too long, by and large. So 
that could be one thing. The other thing would be the new strands, that's the old European 
law and the European Union, and their employment rights, but that could be met by just 
merging those strands of the current commissions. I mean, there's lots of ways you could 
have done it, but they came up with this one. It's also significant which department is 
behind this, the Department of Trade and Industry, which of course is largely geared to 
meeting the needs of employers, and employers have asked for a single commission, 
which they say will be an easier one-stop shop. But anyway, they want a one-stop shop. 
This is not coming from a civil or human rights perspective, this is coming from the 
Department of Trade and Industry. And you could see the employment influence in 
saying, you know, �Don't be taking on employers all the time.� And if you're going to 
have an organization, whatever its name is, to fight for the rights of people, then you have 
to question to what extent those who are denying the rights are setting the agenda. The 
agenda should be set by disabled people, it shouldn't be set by employers, it shouldn't be 
set by ministers. It's disabled people that matter in all this. 

 

CONCERNS ABOUT SUBSUMING THE DISABILITY RIGHTS COMMISSION WITHIN LARGER 
BODY 

 

Q. It seems to me, I don't want to put words in your mouth, but having a DRC, which is 
specifically about disability, and having people with disabilities on it, would seem to be 
having a greater impact in terms of educating the non-disabled world�your peers, 
members of Parliament, etc.�about the importance. I would worry that becoming part 
of this Human Rights Commission where everybody has their own axe to grind sort of 
lowers the profile in a way. Is that a concern? 

 

A. I think all of us are going to have to worry about that, if they go to this new big 
Commission will they lose their own identity? And there's a danger of it. What I've tried 
to do to mitigate that is, there's a new disability bill going through Parliament at the 
moment, which will give the DRC new powers, not just to fight discrimination but to 
promote the equality of disabled people. It's a much more active thing. And there's some 


other things coming in as well. The exceptions on employment are all being removed, so 
the fire service will be covered, the police service will be covered, the only exception will 
be the armed forces. So, we're bringing stronger laws, but they'll need time to settle, 
which will probably take us through 2010, 2012 anyway, which is why I've argued that 
the disability strand will be the vital resource to take all this agenda through, so it's a very 
good agenda. I suspect they'll be more disability bills in the future, but it will be more 
difficult getting them through this particular body. Another thing that the DRC is doing 
now is working with the disability charities very closely to ensure that when the DRC is 
not there, that they are ready and willing to pick up the campaign and roll, so that 
disabled people don't need to rely on one body. So, we'll be going to two strategies. One 
is to ensure the body is as sensitive to the needs of disabled people as possible, and I've 
described some of the measures to do that, but we're also trying to make sure that if this 
fails totally, the disability agenda will still go forward, because of the charities, who can 
do the case in their own right, under the act that says the DRC can sue, the charity can 
sue, an individual can sue as well. And what we do is we fund cases, because anyone can 
take a case, so we don't profit from taking a case. 

 

PURSUING SUITS IN PARTNERSHIP WITH DISABILITY ORGANIZATIONS 

 

Q. Under this new Commission, if you didn't have the powers to sue, would you be able 
to still pay for cases brought forth by charities? 

 

A. Yes, they'll have the power to do so, the question is, will they use it? Will they say this 
is a priority? If they don't, the charities can take the case themselves on behalf of the 
person with a disability, but they would have to foot the bill. And it's typically about 
5,000 pounds a case. So it's expensive, they would have to choose the case. But even at 
the DRC, we only take about 50 cases a year. But what we're choosing now, is having 
taken the civil justice one, we're looking for the big cases. There's an academic lawyer 
who reviews the employment legislation each year, and the discrimination legislation, 
and in his latest lecture, of the eight significant cases being brought under the EDA, the 
DRC was involved with seven of them. So we are taking the big cases, and we've got 
about 1000 more cases on appeal. They're the expensive cases, and you've got to have a 
fairly decent budget to counter the risk of loosing. 

 

IF YOU CAN'T AFFORD JUSTICE...THEN JUSTICE IS DENIED 

 

And if you can't afford justice, in the U.K., a bit like in America, then justice is denied. 
So you need somebody with a big enough purse to ensure you have access to justice. And 
the new organization I suspect will not want to be anti�disabled people; they would get 
the wrath of the disability community and that could make this whole thing fall down. So, 
I don't see disabled people being ignored, what would be more likely is a group of non-
disabled people who don't understand disability as well as the DRC do, would be making 
the major decisions. And not only are they not going to understand disability, they're 


going to have the extra complication of having to meet the needs of the other strands, 
which they also might not understand. And so the decision making process, by definition, 
might not be as well informed as it is in the DRC, related to disability issues. I'm sure that 
in time it will be, one hopes. But there will be a hiatus, I'm sure. So I'm hoping the 
disability committee will at least have the expertise, the knowledge to take this forward 
and to continue this until about 2012. And at that stage I really can't anticipate what state 
the world will be. I'll be long retired; there will be somebody else to make the decisions. 
Judging the situation of the day, what I've done is with the DRC, is set the road out to at 
least 2011, 2012 where's there's some protection and then it really is other peoples' 
decision whether the Disability Commission should continue, or whether it should be 
merged with the other strands. And there might be a case for it then, but I can't anticipate 
that, it's too far away. 

 


* This article originally appeared in DisabilityWorld 24 (2004), 
http://www.disabilityworld.org/06-08_04/gov/interviews.shtml 

 
�In one of the richest countries in the world, 
we still have to raise awareness of disability:� 
an interview with Lars �deg�rd, 
Chair, Norwegian Association of the Disabled *

 

By Ilene Zeitzer, conducted during the Rehabilitation International African Regional 
Congress, held in Durban, South Africa in October 2003 

 

 

 

 

 

 

 

Q. Tell me about your organization. 

 

A. My organization is not an umbrella organization. In Norway, a population of 4.5 
million, we have this nearly ridiculous situation where we have 115 different, separate 
organizations for disabled people in this small country. And what we realized 15 or 20 
years ago was that it would be almost a disaster to follow up with the separation of 
organizations, so we decided that we would, within our organization, the Norwegian 
Association of the Disabled (NAD), that we would have affiliated organizations, 
disability-based organizations within our association. So we are not an umbrella, we are a 
member-based DPO with now 12 affiliated organizations. Our main structure is by local 
branches, we have approximately 360 local branches organized through 19 regions and a 
national body which contains this structure and the 12 affiliated organizations and a 
youth organization as well. 

 

NAD MEMBERS 

 

Q. Tell me about the affiliated organizations�are they only representative of people 
with physical disabilities or is it crosscutting? 

 


A. Only physical disabilities, except we have also among the 12, one parents' association 
and many of their children have multiple handicaps. But NAD is an organization for 
physically disabled persons. 

 

Q. Why is that? If an organization representing mental disabilities wanted to be a 
member and wanted to be part of NAD would you allow that? 

 

A. Yes. Everyone who wants to be a member of our association is free to be a member. 
And we have blind members, deaf members, members with mental retardation, etc. But 
in general, we have a situation in Norway with so many organizations, that they have 
their own strong organizations. So we have created an umbrella where we are cooperating 
and trying to work together on the big political issues in Norway. But we have been 
involved with international development for 25 years, and in our development work we 
do not go out and give our services to only physically disabled persons but to everyone in 
the villages. But in Norway, we were created as an organization of physically disabled 
people, and we still are an organization of physically disabled. We are 73 years old. 

 

Q. Is there a counterpart umbrella-type organization or affiliated organization for 
people with mental disabilities? 

 

A. There are two. The biggest umbrella contains approximately 60 organizations, many 
of them quite small. What they mainly do is work with health-related issues because they 
are very eager to find medical solutions to their problems. My association has never been 
particularly interested in the medical approach towards disability, but rather the societal 
approach. So we have a strong relationship in our umbrella with the Blind Union, with 
the Union for the mentally retarded and for the deaf-blind and together we are focusing 
on society's impact on disability. We do not have a curative approach. 

 

FORMAT OF WORKING WITH GOVERNMENT 

 

Q. How do you work within your government? Do you have an official status with the 
government? 

 

A. In Norway, we also have this Council on Disability appointed by government and 
NAD is a member of the Council. The council is supposed to give advice to the 
government on disability issues. It's a meeting place. When I come to work in the Council 
it works like this�the different Ministries ask or request advice from the Council, but the 
Council can also raise issues that it wants to raise. But our main lobbying work is done by 
ourselves, not through the Council. But we also have this system in Norway where the 
government gives White Papers to the Parliament on many issues and they then establish 
a committee to create the basic documents for this White Paper and our association is 
often invited to be a member of these kinds of committees. So when we are given a 
proposal or White Paper for the Parliament, we do our own paper on whatever the issue is 


and then lobby for it within the Parliament within every single Ministry where they are 
coping with disability issues. This is one of our major tasks in NAD, to act as a lobbying 
instrument for disability issues. We have said to ourselves that we should be very good at 
describing the situation of disabled persons in Norway but we should be even better in 
creating good solutions. So this is how we are trying to work. We have a main office with 
70 full-time employees and we also have a journalist on the staff and we are working to 
raise awareness through media on the issues that we are eager to focus on within the 
Ministries or the Parliament. 

 

CHALLENGE OF RAISING AWARENESS IS ONGOING 

 

Q. In some countries there are problems because the people in government don't see 
certain issues as �disability issues� or don't take into account people with disabilities 
when they are passing legislation or making changes to the infrastructure. Is this the 
case in Norway? 

 

A. Actually I would say this problem is quite similar in Norway. There are many 
activities going on in theory concerning every part of the population, but where disability 
issues are not raised at all. And we are not invited to take part in a Commission or 
whatever it is. Then we have to push and sometimes we succeed to be a member of such 
a Commission and other times we don't. So then we have to push through the media and 
through lobbying in the Parliament. And also many times we can get a very good solution 
in the Parliament, stating very clearly that, for instance, the access to trains should be 
accessible for disabled persons. But still when the results are clear, then we can see that 
they did not follow up the statement from the Parliament due to what they call �technical 
reasons.� And this happens very often. For instance, we have a new train now from the 
main airport in Oslo that will probably last for at least 40 or 50 years. They modified the 
elevators into the train, but in doing so they made them so you could not use an electric 
wheelchair in them because it would be too heavy. And this is a fact�that in 2003 in 
Norway, one of the richest countries in the world, we still have to raise awareness of 
disability issues. And they are still saying we don't have enough knowledge and that is 
rubbish. I mean we have fought for these issues for 30, 40, 50 years and of course they 
have knowledge, but it is ignorance that creates such horrible situations when it comes to 
accessibility in Norway. 

 

GRADUAL MOVE TOWARDS ANTI-DISCRIMINATION APPROACH 

 

Q. Do you have any legal type of human rights or civil rights law that requires society 
to be made accessible, similar to the ADA? 

 

A. No, but there is an ongoing process in Norway, this is in the main House now. We 
have decided some years that our main focus up to 2006 should be new legislation based 
on the Anti-Discrimination Act. And the government last year appointed a law 


preparatory Commission and it's working now. It will deliver its report in 2004 and we 
are hoping that they will advise the government to come up with an anti-discrimination 
law. But it is a big debate and the present government is a right wing party and they are 
not particularly interested in this kind of approach. So I think this will be a very big 
debate and we have a long way to go to reach this. But the legislation when it comes to 
access to new buildings is quite good�the problem is to live up to the standard according 
to the law. 

 

NEED FOR MONITORING AND COMPLIANCE ENTITIES 

 

Q. Is there any oversight or ability to monitor�can someone bring charges if it's not 
done right? 

 

A. Actually no there isn't. What we have to do is through NAD, we have to monitor the 
situation and raise the issues by lobbying the politicians. We can bring individual cases to 
court (there is only one court system in Norway) but it is very expensive to do this. One 
of the reasons why we are asking for this new anti-discrimination act is that we want an 
act that has with it an instrument to monitor and a governmental body that could monitor 
and has the tools to both give fines and advocate. We don't want it just to be on paper�
we want it to be powerful. Two years ago, we managed to get an anti-discrimination 
clause in the employment act, but unfortunately there is no legal body who is monitoring 
the law, there is no instrument to pursue the ideas behind the law. So we are not able to 
say whether the law is functioning or not, so we have to have these kinds of instruments. 

 

FUNDING OF NAD 

 

Q. Tell me a little bit about how your organization is funded. 

 

A. When it comes to the work we are doing nationally within Norway, 80 percent we 
have to make through our own income generating projects. Approximately 5 percent 
comes from our membership fees and 15 percent from support from the government. We 
do mainly two things to raise our funds�we run a big national lottery. We created a 
lottery that people wanted to buy not because we were behind it, in fact, we did not tell 
anyone that NAD was behind the lottery because we were very afraid that this could 
create some sort of charity approach toward the lottery and we did not want that. And the 
other thing we do is that we run several slot machines. But the slot machines will now be 
monopolized in Norway, the government will take over all of them. Now, we will have to 
go out in ordinary business to create our own money. We are facing a huge problem now. 

 

INTERNATIONAL DEVELOPMENT WORK 

 

In our international development work, for every dollar we spend, the government gives 
us five more. So we spend 10 percent and the government is giving us the rest. When we 


started [our international development work] in 1981, there were three of us�the blind 
union, the organization of the mentally retarded, and NAD. We had no experience in 
international development work, so we started in cooperation with the Red Cross Society 
in Norway. And they followed us for five years and then they left us. So now it is run by 
Disabled People's Organizations themselves. And what we did was to establish an 
alliance, what we called the Atlas Alliance, in Norway. Now the Atlas Alliance has nine 
member organizations, all DPOs. 

 

Through the Alliance, we are now running projects in approximately 20 countries, 40 
projects, for an annual cost between 12�15 million U.S. dollars. So it's quite substantial. 
Every tenth year, we can apply for the TV campaign in Norway. Every year there is a TV 
campaign one day of the year in October where approximately 100,000 collectors visit 
every single home in Norway and collect money. We had this campaign last year and we 
raised 145 million Norwegian Kroners. Every single penny of this will be spent on 
international development because we are not collecting money for disability issues in 
Norway. They consider that to be too much of a charity approach, but to collect this 
money for international solidarity work is okay. We have in our bank account 145 million 
Norwegian Kroners (almost $2.1 million U.S.) and that represents the 10 percent that we 
are going to use. It's approximately two to three hundred million dollars that we can 
spend for the upcoming 10 years. We collect 10 percent and the government gives us the 
rest. 

 

NAD�S WORK WITH PARLIAMENT 

 

Q. Does your organization ever approach Members of Parliament to introduce 
legislation on disability issues? Can you ask the Parliament for a White Paper, etc? 

 

A. We do it almost on a daily basis. The president of NAD and I are in the Parliament 
almost every day, talking to and visiting individually, talking to parties and going into the 
Committees of the Parliament to lobby and to advocate for disability issues. We do this 
on a daily basis. What's quite funny or very good is that a big newspaper in Norway in 
April or May did a monitoring for the last year concerning who were the best lobbying 
bodies in Norway. Number one was the huge labor organization and second was NAD. 
We were even better than many of the really heavily financed ones, like shipbuilders. 
This is what we mainly do. We are serving our members and we also provide a lot of 
courses trying to help them in their own community to push their local issues. Our main 
strategy is to raise awareness among our members on the social model of disability, based 
on the thinking of Michael Oliver and Vic Finkelstein in the U.K.. This is one part, the 
second part is the lobbying part, and thirdly we do a lot of creative solutions when it 
comes to housing, especially creating accessible environments. We have architects on our 
staff, a lot of technical persons and we produce a lot of information both to raise 
awareness and to give examples of good solutions. 

 


Q. Do you have local offices, too? The 70 people on your staff, are they all in Oslo? 

 

A. They are all in Oslo. And up to now we had 19 districts, but now we are recreating 
this. So we are now making nine district offices to make them a bit stronger then today. 
Before May of next year they will all be running. In addition to that, we have from time 
to time 10 people in our international development program. 

 


* This article originally appeared in DisabilityWorld 26 (2005), 
http://www.disabilityworld.org/12-02_05/gov/maritsaebones.shtml 

 
Improving Policies, Transportation & Education: 
an interview with Ann Marit Saeb�nes, 
former Mayor of Oslo, Norway *

 

By Ilene Zeitzer, conducted during the 
Rehabilitation International World Congress 
in Oslo, Norway in June 2004 

 

 

 

 

 

 

 

Q. When were you Mayor of Oslo? 

 

A. I was Mayor for four years, from January 1992 to December 1995. I was elected in 
1991 and I came straight into the Mayor�s seat without having previously served on the 
City Council. In the 1995 election we were defeated by the Conservatives; who drew 
support not so much from my party as from its coalition partners. Later on, I became 
chairperson of the Labor Party caucus [bloc] in the City Council, a position I held from 
1997 until 2003. 

 

SERVING ON THE CITY COUNCIL AS A LABOR PARTY MEMBER 

 

Q. So you actually started out as Mayor and then went to the City Council? 

 

A. Yes, in opposition. In Norway, you do not run for mayor as an individual; you run as 
part of a party slate. A party officially decides who is to be mayor only after it has won an 
election. But, in actuality, parties make their choices known before the elections so that 
people know who the nominee is. If you are the nominee in an election and your party is 
defeated, then it�s expected that you will serve in the opposition. 

 

Q. What previous background of yours led to your being chosen by your party to be its 
designee for Mayor? 


 

A. Well, I had been a Labor Party activist for many years. For a brief period I also had 
been what we call an alternate in Parliament. I also think I had become fairly well known 
in my capacity as the social services Ombudsperson for the city of Oslo. So I was chosen 
as a candidate for mayor because they thought I was something of a known quantity. 

 

Q. As a person with a disability, do you think your election as Mayor had an impact 
among your fellow politicians? 

 

A. Among my fellow politicians, certainly. But among the population as a whole, I don�t 
think so. After I was elected Mayor, and even when I was running, I had lots of 
interviews, where they tried to show what kind of person I am. I talked very freely about 
my disability. I think it�s very important that I do so because my disability is not readily 
apparent to many people�I can walk fairly well with my [artificial] leg, and my hand is 
easy to overlook. So I think it was very important in all my interviews to talk about my 
disability, what growing up with a disability was like, what kinds of trouble it caused, and 
what society can be expected to do about it. So I never tried to hide it. On the contrary, I 
deliberately highlighted it. 

 

IMPACT ON POLICIES 

 

Q. What impact did that have on your policy agenda, on how you pushed that agenda, 
or on the Council? 

 

A. First of all, I should add that in the Norwegian political system, it�s very important to 
work through your party, because what a party puts into its program is what it works to 
accomplish at the local or national level. So I�ve always found it�s very essential to be 
involved in developing my party�s program because that�s where we define what we are 
going to do if we come to power. My party had a fairly good program on disability, but 
the effect my disability had in the City Council was that when we proposed something on 
disability, it was very difficult for the other parties to reject it. When I gave a speech after 
becoming Chair and said we are proposing this and this, it was very difficult for them to 
reject it. 

 

Q. Because they would in a sense be rejecting you? 

 

A. In a way. One of the last things that I did, not as mayor, but as opposition leader 
before I left the City Council, was to propose that purchases by the city be limited to 
items which are usable by disabled people so that disabled people should not be 
discriminated against and excluded. To be honest, I don�t think that Council members 
knew what they were doing, but they voted for it. So it�s there, and it�s there for 
organizations of people with disabilities. While I don�t expect that the city as such will 
push it, I think that the organizations of disabled people might, so that was an 


achievement. And there were lots of smaller measures which we debated. But I think the 
biggest problem in the city of Oslo, which I�m sure you have identified while walking 
and driving around the city, is that that it�s not very accessible to people in wheelchairs or 
blind people; it�s very bad. 

 

Q. Well, part of it is those cobblestones. 

 

A. That is bad, I agree, but they are in very few places. But I think that what�s worse is 
that the trams [trolley cars] and buses are not accessible. That�s very bad. Some of them 
are accessible�the city decided some years ago that all new trams and busses bought 
would be accessible, but I think the process has been going very, very slowly. 

 

TRANSPORTATION FOR NORWEGIANS WITH DISABILITIES 

 

Q. And what do people generally do? Do they drive? 

 

A. No. In Oslo we have established a transportation service that anyone who is in a 
wheelchair, has difficulty walking, is blind, or has difficulty learning, can call for a taxi 
and pay the same fare as they would pay on fixed-route transit buses. In Oslo all people 
up to age 67 who have been found eligible can use it almost as often as they want to, as 
long as they don�t overdo it and take rides all day. 

 

Q. We call it paratransit. But the problem is you have separate parallel systems, but not 
one integrated single system. 

 

A. I agree with you, but that is how we have dealt with it. As everybody knows, I think, 
I�m working to make the bus system and trams and trains and subway accessible. And I 
think it will slowly happen, but in the meantime we have to operate the two systems in 
parallel, because it will take time to gradually replace existing inaccessible equipment. 

 

Q. Do you have a deadline in terms of a time limit for all that? 

 

A. No, we don�t. 

 

Q. But any new equipment that you buy in Oslo has to be accessible? 

 

A. Yes, so they say. But the issue was also addressed by a national commission, which 
proposed a timetable for improving accessibility in a number of areas, including housing 
and several modes of public transit, but the government didn�t accept the proposal, 
naturally. So there�s no real timetable. 

 

Q. Isn�t Norway in the European Union (EU)? 

 


A. No. We have had two plebiscites on whether to join, and both lost by very narrow 
margins. 

 

Q. Because the EU has mandated that its member countries make their transportation 
systems accessible by a certain deadline. 

 

A. Well, I think it will happen regardless in Norway. 

 

Q. Is there an ombudsperson for disability in Norway like there is in Sweden? 

 

A. No, there is not. But they are working to get one. An official commission has 
recommended that there be one and also that we should have a law against 
discrimination. 

 

Q. So you don�t have that yet? 

 

A. No, we don�t have that yet, although many people with disabilities use social services 
and thus have recourse to the social services Ombudsperson. 

 

Q. So there�s an ombudsperson for health and social services? 

 

A. Yes, in several cities and I think in almost all counties. 

 

Q. Is there a comparable position at the national level? 

 

A. No. 

 

EDUCATION AND DEINSTITUTIONALIZATION 

 

Q. What disability-related policies or issues were you able to influence? 

 

A. I had to stand on my party�s program, as I said earlier, but we always asked for more 
money for transportation for people with disabilities. And then we successfully argued 
for making buses and trams accessible. We tried to fight to maintain home services for 
people with disabilities. In Norway we�ve been moving away from placing people in 
institutions and toward placing them in the community, and there�s always a fight over 
how much money to spend on that. I think that accessibility and home care were the most 
important issues. 

 

And then, of course, schools should educate everyone. In Norway, the city or the 
community authority is responsible for the schools even if you have the curriculum given 
to you by the state. There�s money for special education in schools. But we always have 
to fight over how much money is actually spent on it. But the law in Norway is very 


clear�everyone has a right to go to ordinary [regular] school. If you need special 
education, you get it in your ordinary classroom. 

 

Q. So you don�t really have a separate special school system, like special schools for 
the blind, etc.? 

 

A. We have some special schools for the blind because that�s what some prefer, but they 
don�t have to go to them. 

 

Q. They have a choice. 

 

A. Yes, and deaf people usually want to go to special schools for the deaf because they 
are attracted by the sign language environment and deaf culture. On the other hand, some 
people send their [deaf] children to ordinary schools. But I think the most revolutionary 
change has been the trend toward keeping people with what used to be called mental 
retardation in the community instead of putting them in institutions. In Norway, 
everybody with a cognitive disability has the right to have an apartment of their own or to 
share one with four to five other people, with the government bearing the cost. Then the 
fight is over how much support to provide. But they all have the right to go to ordinary 
schools. 

 

Q. What about transportation for those kids who go to ordinary schools? 

 

A. They have special transportation, which they can use through college. 

 

ACCOMMODATIONS IN EDUCATION 

 

Q. How are your colleges and universities at accommodating students with disabilities? 
Do they provide easy access? 

 

A. Some people have complained that insufficient accommodations have been made 
when exams were given. 

 

Q. They are not given special help? 

 

A. They do get special help and more time, but that doesn�t satisfy them. I think that, 
compared to the rest of the world at least, we have good provisions for financial aid, but 
then we have the problem of accessibility again. Auditoriums [lecture halls], for example, 
often have steps and tiers of seating. The back of a lecture hall may be accessible to 
students in wheelchairs, but an instructor in a wheelchair would have difficulty getting 
down to the front. Blind students who need Braille face the problem of getting their 
school books after sighted students get theirs. (I understand that this problem may be 
eliminated with the introduction of computerized Braille printers which can produce 


Braille text in a more timely fashion.) This is also a problem in primary grades, where it 
is hard for blind pupils to get education materials (in alternative formats). When I headed 
the National Council on Disability, we said to the government that it is discrimination 
and a violation of their human rights to provide schoolbooks later to some students than 
to others� There is no use going to school if you don�t get your schoolbooks at the same 
time as your peers. So you see that even though the law makes it very clear that 
everybody is has a right to an education, exercising that right can still be difficult [for 
some]. 

 

Q. Do you have a mechanism for providing readers for blind students? 

 

A. I think so. We have books on tape, etc. In Norway you can get support services even if 
you need them at work, I think. But these are very difficult and complex issues, and while 
I knew the rules at one time, I don�t know them now. 

 

Q. Do you have a problem with disabled youth dropping out of school? 

 

A. Using the capabilities of children and youth with disabilities to best advantage is a 
huge problem in Norway, too. It�s not so much that they drop out of school, but rather 
that they don�t get jobs anyway. I don�t have precise figures, but I think most children 
and youth with disabilities finish school, in one way or another, because we have such a 
just educational system that that there are ways (such as vocational schools) of getting 
through it successfully even if you aren�t academically inclined. The trouble comes when 
they enter the job market and can�t get a job, notwithstanding the governmental agencies 
that are supposed to help them find one. So what we are seeing now is whole generations 
of children and youth who have gone through the educational system and are used to 
having social interactions and being accepted by their non-disabled peers, and suddenly 
they find themselves excluded, which is very hard on them. So the trouble, as I see it, is 
that we are not succeeding in getting these students into jobs, so they go on social 
security for the rest of their lives. 

 

[Editor�s note: Ann Marit Saeb�nes is currently Norway�s Director General of the Youth 
and Family Agency at the national level. Portions of the interview concerning her 
responsibilities with this agency were deleted to maintain the focus of this report on 
disability-related issues. However, it is worth noting, that Ms. Saeb�nes is one of very 
few persons interviewed for this report who progressed from a local elected position to an 
appointed federal position.] 


* This article originally appeared in DisabilityWorld 25 (2004), 
http://www.disabilityworld.org/09-11_04/gov/sweden.shtml 

 
�It is important to develop good relations 
with the disability movement:� 

My 14 Years in Swedish Political Life *

 

By Bengt Lindqvist, 
former Minister for Health and Social Affairs, Sweden 

 

 

 

 

 

 

 

 

INTRODUCTION 

 

There are two really strong reasons for opening up participation in political life for people 
with disabilities. The first is that a truly democratic society must recognise diversity and 
accept the different requirements for making political involvement a possibility for all. It 
is a given that people with disabilities are part of any population in the world and 
therefore all nations striving towards democracy must develop an active policy with 
concrete measures to make it possible for people with disabilities to take an active part in 
political life. The second reason is simply that it is not possible to realise the 
internationally recognised goal of disability policy�full participation and equality�
without making it possible for people with disabilities to be involved in the political life 
of their country. It is against this background we will welcome all new initiatives leading 
towards increased accessibility and real participation by people with disabilities in the 
political process. 

 

BACKGROUND 

 

Before I make an attempt to formulate some experiences, gained during my time as an 
elected politician in Sweden, I want to give you some background information, which 
hopefully will help you to understand my role and function as a politician. 

 


I lost my sight as a boy and I have my roots in the Swedish movement of people with 
disabilities. For a long time I served as the president of the Swedish Association of the 
Visually Impaired. From 1977 I held the position as chairperson of the Central 
Committee of Organisations of disabled people in Sweden (HCK), a fairly influential 
organisation with approximately 400,000 members. 

 

In 1980 HCK, together with other organisations such as trade unions, pensioners' 
organisations, etc., got involved in a major political campaign against the ongoing cuts in 
public spending on social services. I was asked to chair the group leading this campaign. 
Our work attracted a good deal of attention and, partly because of this, I was asked to 
accept to run for a seat in Parliament for the Social Democrats (the Swedish labour 
party), to which I belong. Our party won the elections in 1982 and I got my seat in 
Parliament, which had never had a blind member before. 

 

I managed to defend my seat in Parliament through four subsequent general elections and 
left Parliament in 1996, in the middle of an election period. My reason for doing this was 
that I had accepted the position as U.N. Special Rapporteur on Disability in 1994 and I 
found that this function took so much time for me that I was unable to do a decent job in 
Parliament at the same time. 

 

In 1985 Olof Palme, the Swedish prime minister, asked me to join his government and 
gave me the responsibility for social services and family affairs. I kept this post up to 
1991, when our party lost the election. After a short time out of office, I returned to my 
seat as a Member of Parliament. 

 

CAMPAIGNING FOR A SEAT 

 

In our country people were not used to meeting a political candidate with a disability. 
However, when I accepted to run for a seat in parliament, I also had to accept to do the 
same kind and amount of campaigning as other candidates. This meant that I took part in 
all sorts of meetings, street discussions, visits to work places etc. Especially during my 
first campaign in 1982 I often noticed reactions, which I believe had to do with my 
blindness. The reactions were a kind of mixture of sympathy, cautiousness, curiosity and 
reservation. As I gained experience, I improved my performance, but I must also confess 
that these open air meetings and confrontations were never my best discipline. 

 

From a disability point of view, the fact that people met a blind person in this role was 
obviously a good thing. A �disability component� more or less automatically became part 
of my message, even if I spoke about other things. At meetings, which I considered as 
more successful, people �got used to me� and the discussions became more relaxed and 
free from special regards. Participants and listeners found out that people with disabilities 
have views and experiences of other dimensions of life, not just on disability matters. 
Naturally, I also got more questions on disability matters than other candidates. 


 

MY TIME IN PARLIAMENT 

 

As I pointed out before, I was the first blind member of the Swedish Parliament. From the 
very beginning of my work as an M.P., I found that the responsible people for serving the 
members were quite determined to find practical solutions for me. There were many 
questions from the administrators both of the parliament and the party office. How could 
the enormous flow of printed information be made accessible for me? This was a few 
years before the era of personal computers and special equipment for blind people to 
make the information flow accessible. Therefore other forms of services had to be found. 
The result was that the parliament established extensive support services, amounting to 
almost two full-time positions as secretaries. The parliament also bought a scanning 
machine, which was in its initial stage of development. It took two people to carry it from 
one room to another. I also got a Braille computer. 

 

With this secretarial assistance and technical equipment I could manage quite well after a 
few months of looking for efficient combinations and working methods. 

 

It turned out that I could manage most of the routines in the chamber. One exception was, 
however, the different lights signalling to the member who is speaking, when his time is 
out. This once gave the speaker of the house serious problems. I was in the middle of a 
heated discussion with another member and I had totally forgotten about time restrictions. 
When my time was up and I got the red light, which I couldn't see, the speaker did not 
find a nice way to cut me off. He waited for a long time and was clearly embarrassed by 
the situation. Unaware of what was happening, I just went on speaking. Finally, the 
speaker lost his patience and broke me off very rudely, which was not a natural thing for 
him to do. Afterwards he came to me and apologised and we could both laugh at the 
incident. Later on we found a way, through which he could warn me, when my speaking 
time was approaching its end. He simply knocked discretely on the table with his gavel. I 
am not certain, but I think he started to use this method to warn other members as well. 

 

During my time in parliament I served as a member of the Commission for social affairs. 
We were seven representatives of my party and divided issues between us. I had a 
mixture of matters as my responsibility, among them disability. It is important to notice, 
that disability was just one of a number of issues that I worked with. One other area, 
which interested me a lot was family policy and child care. However, with my 
background in the movement of people with disabilities, many of the personal initiatives I 
took in parliament had to do with disability. My links with the movement and with other 
interest groupings made me one of the most diligent members of parliament when it came 
to personal proposals and initiatives. 

 

When I came back to parliament after my six years as a cabinet minister, I had so much 
more political experience. In addition, the whole information flow in parliament had been 


computerised, which meant a revolution in access to me. With some extra equipment for 
Braille and synthetic speech I could manage most of the information on my own. The 
result was that I needed very little extra support and could manage with the same amount 
of secretarial service offered to any member 

 

MY TIME IN GOVERNMENT 

 

As a government minister I was surrounded by so much staff that it was more or less a 
question of getting organised in a different way, to make things work. Among other 
things I introduced a system, where staff members came to my room and made personal 
presentations, instead of sending me loads of written material. This was a practical way 
of getting access for me, but I soon learnt that it was also much appreciated by staff 
members, as they got personal contact and direct communication with the minister. 

 

As a minister I had a rather broad and growing portfolio. The full title of my office was: 
Minister for Social Services and Family Affairs. It included childcare, parent insurance, 
foster care, adoptions, services for people with disabilities and the elderly, alcohol 
policies and drug abuse. I make this long list to illustrate that I was a minister with a 
regular portfolio and not a special minister for disability matters. 

 

I enjoy thinking back on my time in the government. I learnt a lot and I had good 
relations with my fellow ministers. I must admit, however, that some of them were now 
and then tempted to refer disability matters to me, even if these matters clearly belonged 
to their own responsibility. If I could, I gave them advice, but most of the time I sent the 
matter back to them to act upon. 

 

One interesting relation was the one between me and my former colleagues and friends in 
the movement of people with disabilities. They naturally had high expectations on me to 
work especially hard to improve the situation of persons with disabilities. I felt now and 
then that they were disappointed in me, as I failed to realise some of their initiatives and 
proposals. This was particularly noticeable around 1990, as our country was on the way 
into a deep recession. In the elections in 1991 our government had a difficult time and I 
personally found it particularly frustrating that some major improvements in disability 
legislation, which I had prepared, were taken over in the election campaigning by the 
liberals, while we in the social democratic government were mainly thinking of 
sustaining and protecting the strength of the national economy. This was the general 
approach by the government and it probably contributed significantly to our loss of the 
elections. 

 

SOME GENERAL CONCLUSIONS 

 

First of all I think it is important to be involved in politics on an equal basis with others. 
If we want our party to support us as candidates for elected positions, we must try to take 


on the same kind of responsibility for the general programme of the party as other 
candidates, in other words not limiting our role to being a special representative for 
disability issues. With our experience as disabled persons we will strengthen the 
disability dimension anyway. 

 

A different but important point is that the party and the responsible authority must create 
fair conditions for us to function. This is important from the very beginning when we 
accept to run as candidates, and, of course, when we take up positions as elected 
members of an assembly, a council or the national parliament. 

 

Many people with disabilities, who in future want to be involved in political work, will 
have their roots in the movement of people with disabilities. It is very important to 
develop good relations with the movement, with mutual respect for the different roles 
played by you as a politician and the movement constantly advocating for better 
conditions. With good relations there are so many things you can do, even if you will not 
be in a position to satisfy all their requests. 

 

CONCRETE STEPS CALLED FOR 

 

Finally, much increased participation in political decision-making is necessary, if we are 
ever to reach the goal of full participation in society. There are many concrete things that 
can and must be done to open up the possibilities. A few years ago the International 
Foundation for Election Systems (IFES), together with election authorities and disability 
organisations in a number of countries, carried out a successful research and development 
programme in the area of election access. The project revealed many serious problems 
both in election legislation and in the practical exercise of voting rights. As a result of the 
project, IFES has published a report with many valuable recommendations to improve 
access to the voting procedures, including physical access to polling stations and 
information access both from political parties and the election authorities. There are also 
recommendations on how to protect the secrecy of voting and how to provide voting 
assistance without violating the personal integrity of the person voting. 

 

I would very much like to see these recommendations generally implemented around the 
world, and I also hope that these recommendations will be included in the new U.N. 
convention protecting the human rights of persons with disabilities. 

 


* This article originally appeared in DisabilityWorld 26 (2005), 
http://www.disabilityworld.org/12-02_05/gov/lindqvistinterview.shtml 

 
Europe�s First Minister with a Disability, 
Father of the Standard Rules: 
an interview with Bengt Lindqvist, 
former Minister for Health and Social Affairs, Sweden *

 

By Ilene Zeitzer, conducted during the 
Rehabilitation International World Congress 
in Oslo, Norway June, 2004 

 

 

 

 

 

 

 

Q. Before being appointed the U.N. Special Rapporteur on Disability, you had a 
position with the Swedish government? 

 

A. Yes, I was the Minister for Health and Social Affairs. 

 

Q. And how long were you in that position? 

 

A. Six years. And before and after I was elected as a Member of Parliament, holding a 
seat for 14 years on the Stockholm bench. 

 

Q. So you were elected prior to being a Minister and then after, so that means you were 
appointed in the middle and then went back to being elected again? 

 

A. Yes, and took up that office in �92 and went on until �96, when I left freely, because I 
had a seat going up until �98. But the job as Special Rapporteur takes so much time that I 
said to myself before anyone else discovers how little I do in Parliament that I�d better 
leave. I sneaked out, but when I did of course, they�well, there was a little bit of media 
attention. 

 


EXPERIENCE AS MEMBER OF PARLIAMENT IN EARLY 1980S 

 

Q. Can you talk a little bit about when you were first elected to Parliament, what year 
was that? 

 

A. That was in 1982. The background was that, by way of simplification, you could say I 
was chairing the disability movement in Sweden. At the same time we had a very 
difficult economic crisis around the year 1980, and the popular movements, like the trade 
unions, the pensioners, disability organizations�we even had a strong renters union�got 
together and said now we are going to publish a White Paper on the consequences of 
capping social expenditure in Sweden, and I chaired that exercise. The book got quite 
some attention and I think it contributed to the fact that Social Democrats came back to 
power in 1982. During that period, people asked me�I belong to the Labor Party, the 
Social Democrats�they asked me if I would like to run for Stockholm. So I did that in 
1982 and got the seat from then on. So that�s how I got in. 

 

Q. At the time you were the first Minister who had a disability in Sweden, is that 
correct? 

 

A. Yes. 

 

Q. What do you think the impact of having you in the Parliament was on Swedish 
policy, and on your non-disabled colleagues? 

 

A. Well, first of all, it contributed to making disability more visible in the political 
process. I mean, I was physically there. I came with my white cane, every time we had a 
voting procedure I came in, so everyone saw me, everyone reflected. A lot of people 
came up and said, �how can you do this, how do you get your information?� The flow of 
information is, of course, the big problem for a blind person in Parliament. And also from 
the very beginning, there was a very strong conviction, that we will manage the obstacles: 
we will see to it that Bengt gets the information he needs when he wants it. So, the party 
provided one full time secretary to me. In the Parliament in Sweden, everyone belongs to 
a Commission. I got into the Social Development Commission and the office of that 
Commission, the Secretariat, hired an additional person to assist me. So I was really 
spoiled from the very beginning with very good service. 

 

ASSISTIVE TECHNOLOGY: FIRST SCANNER TOOK TWO PEOPLE TO CARRY IT 

 

Q. Explain about how back in 1982, prior to the widespread use of the Internet and so 
forth, how you got your information then? 

 

A. I have a story about that that I will tell you before I answer. When I came back to 
Parliament after the six years in government�we had lost the election in 1991 and then I 


got re-elected�by then, Parliament was completely computerized. I had gotten 
equipment for access, so the two secretaries I had in the Parliament in the previous 
period, I didn�t need any more, not at all. I could manage. I think I had 20 percent more 
secretarial help then any other Parliament Member. So that�s what computers can do. 

 

Q. So what did you do prior to your first term? 

 

A. They recorded a lot on tape. We had a computerized printer, so, already in 1982, the 
important texts were produced in Braille. We had a colossal machine, which was a 
scanner, it�s now in the museum because the Parliament bought it for I think half a 
million Crowns. It takes two people to carry it, but it could scan. So it scanned some text 
for me. You know, a scanner now is 2,000 Crowns and the size of a package of 
cigarettes. What a development! 

 

Q. I thought I remember being told that back in the �80s that you had some kind of 
system that read you the newspaper or delivered the newspaper to your computer? 

 

A. Yes, that was the Swedish system. We had it. If you subscribed to a newspaper and 
you were a blind person, and if the newspaper you wanted to read was part of the 
system�and I think some 80 newspapers in our small country belong to this system�
you get a special radio receiver that is then connected to your computer. During the night, 
the newspaper transmits the whole newspaper electronically to your computer, and in the 
morning you have your morning newspaper. 

 

Q. And that existed back in 1982? 

 

A. No, actually the first experimental service we had with daily newspapers began in 
1980. The small newspaper in a local town, which they read on tape, not all of it, but 
about one hour of the most important content that the newspaper editors selected, then 
these cassettes were carried out by the newspaper distributors, like the other papers. That 
was the first. This was awkward of course, and step-by-step we have refined it. We still 
have this system and it�s still being refined and simplified. We think it�s an important 
aspect of civil rights, I mean to be able to read your own newspaper, the one you prefer. 

 

Responsible for more than disability portfolio 

 

Q. In terms of the things you were able to accomplish while you were in Parliament, as 
far as advancing the agenda of individuals with disabilities, can you point to things 
where you feel your presence made a difference? 

 

A. Yes, but I want to make one point, which is important to me. When I became a 
Parliamentarian, I was not there solely for the purpose of disability. I had to accept other 
portfolios, and I got other responsibilities immediately and that was very encouraging. I 


got into family policy and childcare and training of doctors and I remember I had many 
issues like that when I was a Member of Parliament. But of course, I still held the 
position of Chair of the Swedish disability movement the first three years when I was in 
Parliament, so, of course, they used me very much and we made a lot of fuss. I put 
questions to different Ministers, I made motions, I was one of the most active Members 
of Parliament. Actually, when I was appointed a Minister [for Social Services], they 
joked in Parliament and said that �the appointment was the only way to silence 
Lindquist.� Most of the motions I did together with the movement of disabled people, so 
it was a lot of things, many details, of course, but also some very important, big things. 
One was the recognition of the sign language as the first language of deaf people. And I 
and another Member of Parliament made a motion to create a Bioethics Council in 
Sweden. I think this was in �83 or �84. Because the Prime Minister of Parliament himself 
got very interested in the idea of that Council, we got that through. A few years later I 
became a member of that Council. So those are some examples, and then when I came 
back from my time in government, I was one of those who initiated the Swedish 
disability office. 

 

IMPACT ON NON-DISABLED COLLEAGUES IN GOVERNMENT 

 

Q. What was the effect on your non-disabled colleagues, both when you were a 
Member of Parliament and also as a Minister? Did they become more aware of 
disability issues in areas that would not necessarily have been thought of as disability 
issues, such as transportation? 

 

A. I think we had gone past that when I was a Minister, because there were 
responsibilities for disability measures in several Ministries, in the Ministry of 
Communication, Public Transport, Education, Labor Market, and, of course, Social. So 
many Ministries had programs already, but there�s no doubt that my colleagues in the 
government, there were 22 Ministers, very often came to me and said, �Well, this is a 
disability issue. This must be yours� and I would very often tell that that, �No, it�s an 
education issue which happens to be a concern for some people with disabilities, but it�s 
your portfolio.� So, often they tried to send issues, disability issues, back to me, because I 
was a disability advocate. I had that image. And sometimes I had to fight to make them 
take on their responsibility, and I think that was an educational process between us. But 
they were tempted to give it all to me. 

 

Q. But then, as a result, they got used to having to think about disability without having 
to ask your opinion, is that a correct statement? 

 

A. Yes, I think you can say that, yes. There was a certain educational element between us 
concerning disability, a learning curve. As there was between us and the Minister 
responsible for gender issues, I�m sure. 

 


SERVING AS THE U.N. SPECIAL RAPPORTEUR ON DISABILITY 

 

Q. Can we talk a little bit about your role as Special Rapporteur at the U.N. and how 
that came about in terms of your being appointed? 

 

A. It�s a special story because Sweden was one of two countries in the �80 s proposing in 
the United Nations General Assembly that there be a Convention on the Rights of 
Disabled People. Italy did it, and we did it. And I was the Minister responsible for it. So I 
was in the U.N. in 1989 trying to get a convention, and that was the genesis of the 
Standard Rules. They rejected a convention, there was �convention fatigue� at the United 
Nations. You know, the Child Convention was coming on; they had enormous problems 
in getting the monitoring system financed for the Women�s Convention. And they were 
saying, you know, �don�t come with one more��that was the essential attitude, �not 
now.� But when they had rejected our proposal, then there was a kind of guilty 
conscience, and we realized that we could use that. We said, �Well, something has to be 
done because what we achieved during the year, and two, three years prior to that, is now 
being destroyed due to lack of attention� and many governments agreed. 

 

So, that is the background of the decision in 1990 to draw up the Standard Rules as an 
implementation tool to get things done. And I was involved in preparing that decision. I 
then got involved in preparing the Standard Rules, I actually wrote parts when I was 
employed as a consultant for 11 months by the U.N. at two different periods between 
1991 and 1993. Then in �93 the Rules were completed, and were adopted in early �94. 
The U.N. Secretary General asked me and asked the foreign office if they would support 
his nomination of me as the new Special Rapporteur. I was was already knowledgeable 
about the Standard Rules, and I suppose that�s why they chose me. It was Boutros 
Boutros-Ghali, the former Secretary General, who asked me and the Minister of Foreign 
Affairs if we were agreeable to this arrangement. There was one condition, not very 
clearly stated, but, of course, I used that, saying that the government providing the person 
should also support it. 

 

Q. Pay the salary? 

 

A. Yes, pay the salary but also support the office. And as I was a Parliamentarian, I made 
a condition that I should have a small office in Sweden but my base was in New York. 
We�ve had that office from the very beginning, from September �94 until we closed down 
in January of last year, 2003. 

 

Q. And you were appointed initially for how long a period? 

 

A. Three years. 

 

Q. Three years was the first term and you did another term? 


 

A. A second term also for three years, and then a third term of , almost three years. I 
don�t know why they didn�t make it a full three years. 

 

IMPACT OF 9 YEARS AS U.N. SPECIAL RAPPORTEUR 

 

Q. Can you explain how that office operated within the framework of the U.N.? Was it 
just a bully pulpit, just to try to get people to pay more attention to disability issues or 
were you able to have any oversight over things that the U.N. was doing? 

 

A. I was certainly working hard to influence different parts of the U.N. to do more and to 
do it in harmony with what the General Assembly had adopted in the Standard Rules. So 
I approached all the U.N. family. I had a close cooperative relationship with the ILO 
[International Labor Organization], with the WHO [World Health Organization], with 
UNESCO [United Nations Educational, Scientific and Cultural Organization], and�to a 
lesser extent�with the UNHCR [Office of the United Nations High Commissioner for 
Refugees]. So it was a main part of our work to involve them and also to coordinate what 
we were doing with them.. If you look, for instance, at the education issue, what the U.N. 
decides has to make some sense, and the Standard Rules has a rather distinct section on 
education. And then the Salamanca Statement was developed by UNESCO, and I had a 
small, not-very-influential part in drafting that too. There are very strong forces in the 
special education field, as you know. But we tried to coordinate so that the two 
documents did not conflict, and it was the same when the Committee on the Rights of the 
Child started. We cooperated closely on monitoring the situation of children with 
disabilities. Not so with CEDAW [Convention on the Elimination of All Forms of 
Discrimination against Women] and the Women�s Commission; they weren�t so 
interested in cooperating. They were standing on their own feet and did what they wanted 
to do. 

 

But the answer is, I tried to exert influence, I tried to form relationships, I tried to work 
system-wide in the U.N. I also tried to use the very small resources that there are in the 
U.N. family for disability to try to coordinate, especially with the WHO. We were 
successful to the extent that the third global survey I conducted, was done together with 
the WHO. That was another way of working, to do a global survey, to measure progress 
in countries. And the third one is, of course, to visit countries. We made it our policy that 
we must have an official invitation from the government. That is not to try to be a Special 
Rapporteur of the kind that you have in human rights, because they can stand on a 
Convention which gives them legal clout with countries and they can come and go when 
they like. If I did that, then governments were very reluctant to cooperate, so I said, �If 
you want advice, if you want guidelines, if you want to discuss your own achievements, I 
am happy to come. But you have to invite me formally.� That way we were always 
received by the government of the country. Then we made it a point, of course, to 
mobilize the organizations of disabled people. Afterwards they thanked us for having 


opened the doors to the government ministries which they had been knocking on for a 
long time but prior to our visit, often had not been able to get a real conversation with 
them. In the country, we often tried to mobilize the UNDP [U.N. Development Program] 
office, whatever there was, we tried to liaise. 

 

CHALLENGE OF CONDUCTING INTERNATIONAL SURVEYS ON PROGRESS 

 

Q. And when you did the monitoring mechanisms, the reports, how did you do that? 
Did you rely on the disabled people�s organizations within the country to give you that 
information? 

 

A. You know the official way is to ask the government, and we had official replies. More 
than 100 governments responded to our global surveys of progress achieved in 
implementing the Standard Rules, which is a lot for U.N. surveys�typical is anywhere 
from a high of 70 to a low of 40 replies. But we had more than that. We had 93 and the 
largest one was 107. But at the same time, we sent exactly the same survey questionnaire 
to the more than 600 national affiliates of the six organizational members of the panel. 
[Disabled People�s International, Inclusion International, Rehabilitation International, 
World Blind Union, World Federation of the Deaf, and the World Network of Psychiatric 
Survivors] So we got responses from many of the organizations of the blind, of the deaf, 
and of the physically disabled. For instance, in the biggest survey, the second one, I think 
we had 250 organizations responding from many, many countries; we got organizational 
responses from 130 countries. Of course, if you actually compare the answers from the 
organizations and the answers from the government, sometimes you wouldn�t believe it 
was the same country. They were very, very different. One problem for us was also that 
the replies from the organizations were very different, some were very positive and cited 
some achievements and others were very bitter and didn�t see any progress at all. 

 

Q. Within the same country, some organizations would see the glass as half empty or 
half full, is that what you�re saying? 

 

A. Yes. 

 

Q. Do you think it was because of the type of condition that that organization was 
representing or do you think it was some organizations have official status with the 
government and others don�t, was it that? 

 

A. No, I think it was factual. If the visually impaired had had some recognition recently, 
then they took a very positive stance and said that we have made progress in this area, 
and this and that has happened, and it colored all of their responses. But in other cases, 
they were fighting with the government. And you could have different organizations 
expressing conflicting views in the same country. 

 


Q. It must have been very hard then to sort it all out to get a sense of what the situation 
was really like? 

 

A. Yes, it was impossible. 

 

Q. How did you resolve it, what did you do? 

 

A. I didn�t attempt to tell the truth about the country, but I said that there is more than one 
way of looking at it. You can read those reports, and the summaries of the responses from 
each individual respondent. For example, take Sweden. I remember because I had been 
discussing this with people. We had the government�s response and the organizations� 
responses. And I told them all, �sit down at the same table and try to come up with one 
version of reality, what is the truth. Is the law working as the government says it�s 
working or in the way you�re saying it�s working?� There were some factual differences 
which were resolvable, and in some cases there have been dialogues between respondents 
about their responses, so it was a useful exercise. The first thing we must agree on, even 
if we don�t have the same perspective, is, what is the situation? 

 

Q. I think it�s hard without having quantifiable, baseline measures. 

 

A. And we didn�t have that. 

 

Q. So then doesn�t it all become emotional, or episodic or anecdotal kinds of things 
that get reported? 

 

A. Yes, but there also were measurable indicators of progress. You should see the 
questionnaire. Is there a national council on disability, yes or no? Are organizations of 
disabled people represented on that council, yes or no? Do they form the majority on that 
council, yes or no? We used those kinds of questions. 

 

Q. Those are rather straightforward. 

 

A. And yet we would have different answers in many cases. Take the issue of sign 
language. In Sweden (where I knew the situation), the deaf reported correctly with 
respect to the government, but the visually impaired didn�t seem to know what the 
situation was concerning the sign language issue. So some organizations can be more 
ignorant than others. 

 

But we made one mistake. I know that you know from the work you do, that it�s very, 
very difficult to formulate such questionnaires internationally, because [countries] are 
also so different. With WHO, we asked about rehabilitation, and the questions were 
constructed in such a way that practically all the countries in the world seemed to have 
well-functioning rehabilitation programs because they could answer yes. And if you had 


one program for ten people, you could answer yes. So quantification is important. 
Practically every country has some kind of rehabilitation, for perhaps 10 or 100 people, 
but not for all people in these developing countries. There should have been a second 
step, a follow up question to go into more depth to see what the actual situation is. So, it�s 
very difficult, but that is one way we tried to work. I would have liked very much more to 
link up with universities and to make them follow up, if not the whole global survey, at 
least certain aspects in a region or between a few countries or even this kind of 
clarification in one country. But we never did that, although I think we stimulated some 
individual researchers. I�ve never specifically seen the results, though. 


 Selected Articles and Reports 
Published in DisabilityWorld 2000�2005: 
EUROPE 

 

The following lists selected news articles and reports from Europe, 
published in DisabilityWorld (www.disabilityworld.org) 2000�2005, 
documenting the rise of activities pertaining to 
disability and good governance in that region. 

 

 

 

REGIONAL/ EUROPEAN UNION 

 

European Conference of Ministers of Transport Adopts Charter on Access to 
Transport 

DisabilityWorld 3 (2000) 
. http://www.disabilityworld.org/June-July2000/access/Briefly.htm#European

 

The new Charter adopted by the ECMT requires that public funding of transit projects be 
made conditional on achieving satisfactory progress with the inclusion of access features. 
The European Commission receiving this recommendation is a major source of funding 
for transportation projects in central and eastern Europe. 

 

Buses for All Succeeds with European Union 

DisabilityWorld 5 (2000) 

. http://www.disabilityworld.org/10-12_00/access/briefly.htm

 

Buses for All (Europe) has been successful in getting the European Union (EU) Council 
of Ministers to endorse a Common Position paper towards EU-wide standardization of 
accessibility provisions for passenger vehicles with 8 or more seats. 

 

European Parliament Approves Accessible Buses Directive 

DisabilityWorld 6 (2001) 

. http://www.disabilityworld.org/01-02_01/access/briefly.htm

 

A major victory was won by disability advocates on February 16 when the European 
Parliament in a close vote decided to adopt the �Bus and Coach Directive.� This means 
that all buses in European Union countries will have to be fully accessible, utilizing 


primarily low floor or kneeling vehicles with an accompanying ramp or lift. 

 

Voting Rights Victory in European Union 

By Kay Schriner, DisabilityWorld 17 (2003) 

. http://www.disabilityworld.org/01-03_03/gov/vote.shtml

 

The International Foundation for Election Systems has announced that the European 
Parliament unanimously adopted a resolution on basic human rights in the European 
Union that includes a call to member states to ensure voting rights for people with 
disabilities. 

 

A Summary of European Union Policies concerning People with Disabilities 

By Teresa Zolkowska, PhD, Department of Special Education, University of Szczecin, 
Poland; Iwona Kasior-Szerszen, MS, PT, College of Pharmacy, Nursing, and Allied 
Health Sciences, Department of Physical Therapy Howard University, USA; and Irena 
Blaszkiewicz, MS OTR/L, College of Pharmacy, Nursing, and Allied Health Sciences, 
Department of Occupational Therapy, Howard University (Reprinted with permission 
from the journal, Disability Studies Quarterly , Fall 2002, Volume 22, No.4) 

DisabilityWorld 17 (2003) 

. http://www.disabilityworld.org/01-03_03/news/eupolicies.shtml

 

The way the EU has been functioning so far indicates that the Community increasingly 
emphasizes the so-called social dimension of disablement. Currently, we can witness how 
the understanding of this term evolves from the statement that disablement has a 
traumatic physical and psychological effect on people resulting in their difficulty to 
ensure themselves adequate quality of life (individual model), to realizing that disabled 
people encounter various economic and social barriers which prevent them from ensuring 
themselves adequate life quality by their own effort (social model). 

 

Council of Europe Adopts Recommendation on Full Inclusion 

DisabilityWorld 17 (2003) 

. http://www.disabilityworld.org/01-03_03/news/inclusion.shtml

 

On 29 January 2003 the Parliamentary Assembly of the Council of Europe adopted 
Recommendation 1592 (2003) �Towards full social inclusion of persons with 
disabilities�. 

 

IDEAS Project Sponsors Governance session in Oslo 

DisabilityWorld 23 (2004) 

. http://www.disabilityworld.org/04-05_04/gov/oslo.shtml

 

A session exploring the impact of disabled politicians and disability policy bodies will be 
held as part of the RI World Congress in Oslo, Norway, June 21�24. The session is 


being organized as an activity of the International Disability Exchanges and Studies 
(IDEAS) project for the New Millennium, administered by the World Institute on 
Disability (WID). The session, to take place on June 22, will feature the following 
speakers: Judith Heumann of the World Bank, discussing the impact of disabled political 
appointees during the Clinton Administration; Bengt Lindqvist, Europe's first blind 
Cabinent Minister, reflecting on influences on Swedish disability policy over the last two 
decades; Florence Nayiga Sekabia, Uganda's Minister for Disability and Aging, evaulting 
the impact of the new Ugandan system requiring 5 disabled Members of Parliament; Lars 
�deg�rd, Norway's first wheelchair-using Member of Parliament, will analyze influences 
on disability policy in Norway; and Kathleen Martinez, presidentially appointed Member 
of the U.S. National Council on Disability, will discuss the impact of the NCD on 
disability policy in that country. 

 

Disability rights take off with proposed EU air passengers' Regulation 

DisabilityWorld 26 (2005) 

. http://www.disabilityworld.org/12-02_05/il/airrights.shtml

 

The new proposal for a Regulation on the rights of passengers with reduced mobility 
when travelling by air will be officially presented tomorrow by Vice-President of the 
European Commission Jacques Barrot, during the traditional EC Midday Press 
Conference at the Berlaymont building in Brussels. For the European Disability Forum 
(EDF), representing 50 million people with disabilities in Europe and ensuring that their 
interests are taken into account in all EU policies and legislation, the new proposal for a 
Regulation will mean a significant change in the lives of disabled people, stopping air 
companies and airports from continuing to discriminate. 

 

ARMENIA 

 

Armenian NGOs and Election Administrators Discuss Improving Elections Access for 
Disabled Citizens 

DisabilityWorld 26 (2005) 

. http://www.disabilityworld.org/12-02_05/gov/briefs.shtml

 

IFES-Armenia and Armenian NGOs, Lusastgh and Paros, convened a round table 
discussion to improve access for disabled voters to the country's electoral processes and 
further develop the recommendations regarding the Electoral Code and other legal 
procedures with representatives from the Armenian National Assembly, the Central 
Electoral Commission, territorial electoral commissions, local government officials, and 
international and local NGOs. Armenia's current electoral code guarantees equal electoral 
rights of all citizens who have the right to vote, including citizens with disabilities, and 
the officials agreed to address the needs of disabled voters in legislative changes. 

 


 

GERMANY 

 

Working toward Anti-Discrimination Legislation in Europe and Germany 

By Swantje Koebsell, DisabilityWorld 3 (2000) 

. http://www.disabilityworld.org/June-July2000/Governance/EuropeanDay.htm

 

�Anti-Discrimination Now!� was the slogan of the 8th European Day for Disabled 
Persons, always taking place on May 5th. This day was introduced in 1992 to enable 
disabled people all over Europe to act in unison for anti-discrimination legislation. With a 
different slogan every year, disabled people in many European countries organize various 
activities to make the public and the media aware of their situation. In Germany, in 1999 
70,000 disabled people took part in 220 activities in 150 towns�the biggest turnout since 
the introduction of the day. Activities can be every type: demonstrations as well as 
handing out flyers, concerts, street theatre and other performances. 

 

German Parliament Passes Equal Rights Law for Disabled People 

By Ottmar Miles-Paul, DisabilityWorld 12 (2002) 

. http://www.disabilityworld.org/01-03_02/gov/germany.shtml

 

February 28 was a historic day for the civil rights movement of disabled people in 
Germany. Our Federal Parliament passed our first equal rights law for disabled people 
witha huge majority. Even though the Parliament of the States still has to agree to the 
law, we feel quite sure that they will. Two of our great disability rights lawyers, Horst 
Frehe and Andreas Juergens, were even sitting on the government bench during the 
debate and the passage of the law, so the disability movement was right in the middle of 
this historic day. 

 

 

GREAT BRITAIN 

 

British Legislative Experts Call for a New Approach to Enforcement of Anti-
Discrimination Legislation 

DisabilityWorld 5 (2000) 

. http://www.disabilityworld.org/10-12_00/gov/briefly.htm

 

A study conducted by British legal experts calls for a single U.K. Equality Act, bringing 
together the existing anti-discrimination legislation in relation to race, gender and 
disability, but adding among others, age and sexual orientation as new grounds of 
discrimination. Published in July, the study results from an independent review of the 
U.K.'s anti-discrimination legislation, carried out by the Cambridge Centre for Public 
Law and the Judge Institute of Management Studies. The review argues that changes are 
needed because the present framework places too much emphasis on inconsistent state 


regulation and not enough on the responsibility of organizations and individuals to 
develop business plans to widen access and diversity. 

 

Introducing The U.K. Disability Rights Commission 

By Simon Minty, DisabilityWorld 5 (2000) 

. http://www.disabilityworld.org/June-July2000/Governance/UKDisabilityRights.htm

 

As from 31st March 2000, there now exists the Disability Rights Commission (DRC). 
The Commission's Board are made up of the Chair Bert Massie, the CEO, Bob Niven and 
fourteen Commissioners from fields of non-profit organisations, business, trades unions, 
freelance consultancy, academia and the media, the commission is finding it's feet. With 
9 of the Commissioners being disabled, the DRC has the opportunity to make some 
headway in ensuring the DDA become the legislative �Jaws� that disabled people 
wanted; that is, getting some real teeth! 

 

U.K. Considers New and Inclusive Special Education Bill 

By Kay Schriner, DisabilityWorld 6 (2001) 

. http://www.disabilityworld.org/01-02_01/gov/educationbill.htm

 

In a move to further integrate children with disabilities into mainstream school, Great 
Britain's House of Lords is debating a bill that would, according to the Alliance for 
Inclusive Education, �put a new duty on schools and Local Education Authorities to plan 
for increasing accessibility and inclusion.� The Special Education Needs and Disability 
Bill is intended to implement proposals made by the government in the recent Green 
Paper entitled Excellence for All Children: Meeting Special Educational Needs . Two 
subsequent documents, Meeting Special Educational Needs: A Programme of Action 
(published in November 1998 in England) and Shaping the Future for Special Education 
(published in Wales in January, 1999) were prepared to describe a 3-year plan of 
implementation. This bill is part of that plan. 

 

Controversial Speech by British Activist: Have Disability Rights Gone Too Far? 

By Colin Low, Chairman, U.K. Royal National Institute for the Blind, DisabilityWorld 7 (2001) 

. http://www.disabilityworld.org/03-04_01/news/low.shtml

 

(Editors' Note: Reprinted in DisabilityWorld with permission of Colin Low, this 
presentation was made in early April to City University in London and, based on some 
lively exchanges on disability listservs, seems to have caused quite an uproar in the 
British disability community. It is reprinted here in its own right�a frank and historical 
assessment of the disability movement in Britain by one of its senior members�but also 
for its insights about a current international development, the publication this spring of a 
new and controversial version of the World Health Organization's International 
Classification of Impairments, Disabilities and Handicaps, known as ICIDH-2. ) 

 


Disabled Britons Reported Killed in Atomic Testing 

By Kay Schriner, DisabilityWorld 9 (2001) 

. http://www.disabilityworld.org/07-08_01/gov/testing.shtml

 

The Independent, a London newspaper, has reported that disabled Britons apparently 
were killed while being used to test the effects of atomic bombs during the 1950s. 
According to this report, institutionalized individuals with disabilities were taken to 
Australia to be used as �guinea pigs� when the British were conducting tests there. The 
story came to light when Robert Jackson, director of the Centre for Disability Research 
and Development in Perth, Australia, was told by an Australian pilot that he had flown 
the disabled Britons to the testing site at Maralinga in South Australia. �I was one of the 
pilots, and we didn't fly them out again,� the pilot told Jackson. 

 

New Report Finds British Elections More Accessible 

By Kay Schriner, DisabilityWorld 10 (2001) 

. http://www.disabilityworld.org/09-10_01/gov/election.shtml

 

Disabled people in Great Britain are more likely to find an accessible polling place now 
than in past elections, says a new report issued by the Disability Rights Commission. In 
the 2000 elections, 69% of the polling stations were found to be inaccessible�but this is 
a big improvement over the 94% of polls found to be inaccessible in 1997. Eighty-one 
percent of the survey participants said they found poll workers to be friendly, helpful, and 
�keen to improve accessibility.� The polls received high marks for having clear signposts 
(80%), having appropriately-designed ramps (71%), and being well lit (71%). 

 

U.K. Disability Rights Commission Critiques Government Plans to Reduce Workplace 
Discrimination 

DisabilityWorld 11 (2001) 

. http://www.disabilityworld.org/11-12_01/employment/drc.shtml

 

Government plans for implementing new European Union (EU) anti-discrimination laws 
don't fully address the disability rights agenda, stated the United Kingdom Disability 
Rights Commission (DRC) in a press release of 13 December 2001. Today the 
government will start consulting relevant groups on the implementation of the EU Anti-
Discrimination Directive, which will protect disabled people, gay people, women, older 
people, ethnic and religious minorities in the work place. 

 

Nearly 10% of Scotland's Local Councillors Have Disabilities 

By Kay Schriner, DisabilityWorld 11 (2001) 

. http://www.disabilityworld.org/11-12_01/gov/scotland.shtml

 

The Disability Rights Commission of Scotland reports that 9.8% of local authority 
Councillors identify themselves as having a disability. This compares to the 20% 


disability rate among Scots generally. The percentage was higher among male 
Councillors than female Councillors: 10.4% of men reported they were disabled, while 
only 6.4% of women Councillors said they had a disability. 

 

Majority of Contacts with U.K. Disability Rights Commission Concerned with 
Employment Issues 

DisabilityWorld 13 (2002) 

. http://www.disabilityworld.org/04-05_02/employment/drc.shtml

 

More than 4,000 disabled people who have faced discrimination have been supported by 
the Disability Rights Commission (DRC) since it was set up two years ago. Some 105 of 
these cases attracted full legal representation as they were judged to have potential 
strategic importance in securing rights for disabled people. On its second anniversary in 
April, the DRC reported that it has taken over 144,000 calls on its Helpline from disabled 
people, employers and service providers from April 2000 to March 2002. 

 

Great Britain Reviews Disability Discrimination Act 

By Kay Schriner, DisabilityWorld 14 (2002) 

. http://www.disabilityworld.org/06-08_02/gov/act.shtml

 

In its first comprehensive review of Great Britain's Disability Discrimination Act of 
1995, the Disability Rights Commission has recommended a number of changes to the 
Act. The Disability Rights Commission (DRC), created by the British Parliament in 2000 
to enforce the rights of people with disabilities, bases some of its recommended policy 
reforms on a series of proposals originally made by the Disability Rights Task Force in 
its 1999 report �From Exclusion to Inclusion.� The Task Force was a government-created 
body that represented all the stakeholders, including disability groups, the Federation of 
Small Business, the Institute of Directors, the Confederation of British Industry, the 
Trades Union Congress, and health and social services. One of the recommendations�all 
of which were unanimously adopted by the task force�was to create the Disability 
Rights Commission. Many other Task Force proposals have not been adopted. 

 

No Ban On Guide Dogs Under Islamic Law 

DisabilityWorld 16 (2002) 

. http://www.disabilityworld.org/11-12_02/gov/guidedogs.shtml

 

Recent guidance from the Sherrat Council has confirmed that trained assistance dogs can 
accompany disabled people into restaurants or taxis managed or driven by Muslims. With 
two million Muslims in Great Britain, many running businesses in the service sector, this 
represents an important ruling with potentially far-reaching effects. The Disability 
Discrimination Act (DDA) requires service providers to change practices deemed to be 
discriminatory. Therefore, this guidance helps to clarify religious law and prevent any 
possible conflict with secular law. 


 

New U.K. Disability Bill & Response of Disability Rights Commission 

DisabilityWorld 21 (2003) 

. http://www.disabilityworld.org/11-12_03/gov/bill.shtml

 

The inclusion in a new disability bill of a legal duty to promote disability equality�
similar to the duty to promote race equality�was welcomed by the Disability Rights 
Commission in December 2003. The new disability duty will place a requirement on 
public bodies to produce clear policies and action plans aimed at proactively tackling 
discrimination. The draft disability bill also contains measures to protect people with long 
term progressive conditions�such as cancer, HIV and Multiple Sclerosis�from 
discrimination. Transport services will also now be covered by the law. 

 

Anthony Babington: Disabled British Judge, Historian & Campaigner, 1920�2004 

By M. Miles, DisabilityWorld 23 (2004) 

. http://www.disabilityworld.org/04-05_04/news/babington.shtml

 

Born in 1920, Anthony (Tony) Patrick Babington suffered severe injuries in battle in 
1944. He lived a further 60 years pursuing, against considerable odds, a career as 
barrister, judge, writer and social campaigner with significant paralysis and speech 
impediment, dyslexia and dysgraphia, also tuberculosis, recurrent neurological problems 
and a persistent sense of humour. One of the more remarkable disabled British men of his 
century, he embodied the heroic and the ordinary, the convivial and the lonely, the 
participant in powerful insider groups and the neighbour of the proverbial Man on the 
Clapham Omnibus. 

 

U.K. law enters new phase, requiring access for disabled persons to businesses 

DisabilityWorld 25 (2005) 

. http://www.disabilityworld.org/09-11_04/access/briefly.shtml

 

The Disability Discrimination Act in the U.K. has now moved into a new phase, 
requiring shops, restaurants and other businesses to ensure disabled people can use the 
same services offered to able-bodied people. Disability activists warn that there will 
likely be court cases to enforce rights or direct action against specific offenders. The 
Disability Rights Commission oversees the implementation of the new legislation. 

 

New Disability Rights Manifesto in Northern Ireland 

From the Disability Tribune (Dec. 2003/Jan. 2004), a publication of Disability Awareness 
in Action, DisabilityWorld 26 (2005) 

. http://www.disabilityworld.org/12-02_05/gov/briefs.shtml

 

One in five people in Northern Ireland are disabled. Disability Action, the local DPO, 
produced The Northern Ireland Manifesto and hopes that it will work towards 


challenging the disadvantage and discrimination faced by disabled people in that region. 
The Manifesto covers all the key areas including the right of disabled people to be 
recognized as human beings, the right to education, the right to employment, housing and 
information. Disability Action wants the Manifesto to be used by individuals and 
organizations to lobby government departments, political parties and all public 
representatives. 

 

Disabled voters in Wales launch campaign to improve voter access 

DisabilityWorld 26 (2005) 

. http://www.disabilityworld.org/12-02_05/gov/briefs.shtml

 

The BBC reported in April that the Wales Disability Reference Group has launched a 
campaign to improve access to voting stations for Wales' 400,000 disabled voters. A 
2003 survey revealed that 77% of polling booths were inaccessible to some, and the 
group said with some planning these obstacles could be avoided. Representatives from 
the group met members of all the main political parties. One of the points raised was for 
politicians to ensure that all the forms for voting are available in alternative formats such 
as Braille. The Wales Disability Reference Group believes that it is in the parties' own 
interest to maximize potential voters' chances of casting their ballot in the June local and 
European elections. 

 

 

GREECE 

 

Greek Government Drafts Anti-Discrimination Law for Minorities 

DisabilityWorld 25 (2005) 

. http://www.disabilityworld.org/09-11_04/gov/greece.shtml

 

In order to bring its laws in line with the European Union, the Greek Government is 
planning legislation to banish discrimination in the workplace and in its social security 
system on the grounds of race, gender, religion, disability or nationality. The blueprint, 
comprised of five chapters and 25 articles has been prepared by a drafting committee 
under the guidance of the vice president of the Council of State, Greece's highest 
administrative court. The draft law also calls for private and public sector employers to 
improve work conditions for disabled people. 

 

 

IRELAND 

 

Barrister Reviews Recent Irish Legislation 

By Henry Murdoch, DisabilityWorld 9 (2001) 

. http://www.disabilityworld.org/07-08_01/gov/irish.shtml

 


There has been a raft of important legislation recently which could have a significant 
impact on persons with disabilities and their rights. For example, as regards their having 
direct access to mainstream services; having access to support to obtain their 
entitlements; having access to buildings, airports and public transport; having access to 
education and to qualifications; having access to information; and as regards their right 
not to be discriminated against in relation to employment and in relation to goods and 
services. 

 

Protests Force Withdrawal of Irish Disability Bill 

By Kay Schriner, DisabilityWorld 12 (2002) 

. http://www.disabilityworld.org/01-03_02/gov/irishbill.shtml

 

The Disability Bill, hailed by the Irish Minister of State at the Department of Justice, 
Equality and Law Reform, Mary Wallace, as assurance that disabled people would be 
�able to access the same rights as everyone else� has been withdrawn because of strong 
protests from the disability community there. A major criticism is that the bill adopts a 
�duties of public bodies� approach rather than a �rights of individuals approach.� An 
individual with a disability would have no right to take legal action against a public body 
for failure to comply with the act. 

 

New IT Accessibility Guidelines for Ireland 

DisabilityWorld 16 (2002) 

. http://www.disabilityworld.org/11-12_02/access/briefly.shtml

 

The Irish National Disability Authority recently released accessibility guidelines for a 
wide range of information and communication technologies aimed at procurers and 
developers of such technologies and services. The guidelines cover public access 
terminals (ATMs, ticket machines, etc.), websites and online applications, 
telecommunication devices including regular and cellular phones and application 
software and are located online at http://www.accessit.nda.ie/ . 

 

 

KOSOVO 

 

Kosovo Elections Made More Accessible 

By Kay Schriner, DisabilityWorld 5 (2000) 

. http://www.disabilityworld.org/10-12_00/gov/kosovo.htm

 

Kosovo citizens with disabilities may have been surprised to find themselves the target of 
a get-out-the-vote effort in the October 28 municipal elections. Disabled people, 
especially those who have difficulty leaving their homes, were the focus of a nationwide 
effort to �promote greater inclusion of people with disabilities� in elections, according to 


the International Foundation of Election Systems (IFES), one of the sponsors of the 
project. 

 

 

 

THE NETHERLANDS 

 

Disability rights going Dutch 

By Agnes van Wijnen, DisabilityWorld 17 (2003) 

. http://www.disabilityworld.org/01-03_03/gov/dutch.shtml

 

Acknowledging developments in numerous countries worldwide and in the European 
Union, the Netherlands is finally following suit and coming close to having the first equal 
treatment law being passed in the Senate. When this happens it will be a historical 
moment for people with disabilities in the Netherlands, even though the scope of the law 
is still quite narrow. Contrary to the expectation that most people seem to have, the 
Netherlands is literally a developing country when it comes to non-discrimination 
legislation for people with disabilities or chronic illness. Notwithstanding a ten year 
lobbying effort, the Netherlands until this very moment has no legislation in force that 
prohibits discrimination and exclusion of people with a disability or chronic illness. 

 

The right to live in this world and be treated with respect; The possibilities of criminal 
law 

By Agnes van Wijnen, DisabilityWorld 17 (2003) 

. http://www.disabilityworld.org/01-03_03/gov/law.shtml

 

To combat and end exclusion and discrimination towards disabled people, various legal 
approaches are open: constitutional law, civil law, criminal law and social welfare laws. 
Probably most used throughout the world, as Degener and Quinn concluded in their 2000 
survey of International, Comparative and Regional Disability Law Reform [1] is the civil 
law approach. They identified 27 countries where a more or less comprehensive civil 
anti-discrimination law was enacted, mostly during the last decade of the 20th century. It 
goes without saying that of these the most comprehensive ones [2], which cover areas 
beside employment discrimination, tend to be the more influential in combating 
discrimination. That is, assuming they are solid and powerful in their enforcement 
mechanisms, and include the notion of �reasonable accommodation�. 

 

 

NORWAY 

 

Norwegian Tripartite Agreement on a More Inclusive Workplace 

DisabilityWorld 13 (2002) 

. http://www.disabilityworld.org/04-05_02/employment/norway.shtml


 

The tendency in recent years for more and more employees to leave working life on 
prolonged social security benefits is not to the good of individuals, enterprises or society. 
Sickness absence, disability benefits and early retirement also play a part in weakening 
the supply of labour to all parts of community life. The social partners have a particular 
responsibility which they share with the authorities to work towards changing attitudes 
and to reverse this trend. 

 

The Government and the social partners represented by the Norwegian Confederation of 
Trade Unions (LO), the Confederation of Norwegian Business and Industry (NHO), the 
Confederation of Vocational Unions (YS), the Federation of Norwegian Commercial and 
Service Enterprises (HSH), the Norwegian Association of Local and Regional Authorities 
(KS), the State represented by the Ministry of Labour and Government Administration 
(AAD) and the Federation of Norwegian Professional Associations (Akademikerne) have 
therefore agreed to sign an Agreement to cooperate on strengthening an active labour 
market policy in the workplace. The purpose of this Agreement is to help to: create a 
more inclusive workplace for the good of individual employees, workplaces and society 
reduce the utilisation of disability benefits and sickness absence make better use of older 
employees' resources and labour in the workplace (ref. The Centre for Senior Policy's 
campaign to combat early retirement among older members of the workforce, �Nasjonalt 
krafttak for eldre i arbeidslivet�). 

 

First Norwegian MP to Use a Wheelchair 

By Kay Schriner, DisabilityWorld 5 (2000) 

. http://www.disabilityworld.org/10-12_00/gov/oedegaard.htm

 

Lars �deg�rd, the Secretary General of the Norwegian Association of the Disabled 
(NAD), is the first member of the Norwegian Parliament to use a wheelchair�which 
may explain why the Parliament's chamber was inaccessible. Attending his first session, 
�deg�rd was forced to sit on the lowest level of the chamber, separated from his 
colleagues. That situation is being remedied, thanks to pressure from media coverage of 
the event. �deg�rd and NAD are advising the government about the actions necessary to 
make the Parliament accessible. 

 

Norwegian Parliament Adopts Anti-Discrimination Law 

DisabilityWorld 8 (2001) 

. http://www.disabilityworld.org/05-06_01/employment/norway.shtml

 

Following intensive lobbying by the Norwegian National Disability Council, the 
Norwegian Parliament has amended its basic law on the work environment to include 
language against discrimination towards disabled people on the labor market. According 
to a report by the European Disability Forum, the most important feature of the new law 
is that it provides sanctions through compensation for people who have been 


discriminated against due to their disability. 

 

 

RUSSIA 

 

Disability in Russia Reportedly on Increase 

DisabilityWorld 5 (2000) 

. http://www.disabilityworld.org/10-12_00/gov/briefly.htm

 

Reports from Russia are that the number of disabled people there has nearly doubled in 
the last six years. According to a new statement by the First Deputy Prime Minister, 
Valentina Matviyenko, the estimated total is now approaching 10 million or one of every 
15 men, women and children. 

 

Opportunities for Disabled Russians: an overview of legislation and programs 

By Valentina Lupanova, DisabilityWorld 13 (2002) 

. http://www.disabilityworld.org/04-05_02/employment/russia.shtml

 

The Russian constitution guarantees every citizen the right to employment, the right to 
make his or her own employment arrangements, the right to choose his or her own field 
of employment and profession, the right to work in a safe environment, the right to a 
salary that is not less than the legally-established minimum wage, the right to freedom 
from discrimination in employment, and the right to protection from unemployment. 
People with disabilities are provided additional guarantees to employment in Russia's 
Labor Code and in the Federal Law on the Social Protection of Disabled People in 
Russia. Other legislation has also been passed to guarantee employment for persons with 
disabilities, for example the law on 3% quotas passed in 1997 in Moscow, or the law on 
equal access for disabled people, passed on January 2001. It would seem that disabled 
people in Russia are well-protected by legislation which provides many opportunities for 
employment. However, unemployment remains very high amongst disabled people. 
Exact figures are unavailable. The authors of this article estimate that a minimum of 50% 
of disabled Russians are unemployed. 

 

 

SLOVAK REPUBLIC 

 

Budapest Center Urges Slovak Government to Observe U.N. Human Rights 

DisabilityWorld 19 (2003) 

. http://www.disabilityworld.org/06-08_03/news/budapest.shtml

 

The Mental Disability Advocacy Center (MDAC), an international organization that 
promotes and protects the human rights of people with mental health problems and 
intellectual disabilities, urges the Slovak government to accept concluding observations 


of the 78th session of the United Nations Human Rights Committee (HRC) and end the 
use of cage beds. The HRC, the monitoring body of States that have ratified the 
International Covenant on Civil and Political Rights (ICCPR), periodically reports on 
States' protection of the civil and political rights of persons within their jurisdictions. 

 

 

SPAIN 

 

Spain approves law to enable access of persons with disabilities to the information 
society 

By Luis Fernando Astorga Gatjens, DisabilityWorld 15 (2002) 

. http://www.disabilityworld.org/09-10_02/gov/accesslaw.shtml

 

Last May, the Parliament of Spain approved, with 173 votes against 118, an act called 
�Ley de Servicios de la Sociedad de la Informaci�n y de Comercio Electr�nico� (Law of 
Services for the Information Society and Electronic Commerce). The determination was 
issued by Spain's Scientific and Technological Commission. The new law states: �This 
Law contemplates a series of provisions aimed at ensuring persons with disabilities their 
effective access to the information provided by electronic means, particularly, the 
information from the public Administration, as it was established by the Resolution of the 
Council of the European Union of March 25, 2002, regarding accessibility to all public 
web site services and installations and their content.� 

 

Elections in Spain and Voting by People with Disabilities 

By Pedro Fern�ndez Gonz�lez, Solidaridad Digital, DisabilityWorld 19 (2003) 

. http://www.disabilityworld.org/06-08_03/gov/spain.shtml

 

The regional and municipal elections of Spain, held on May 25, again evinced the lack of 
accessibility at many voting sites and the urgent need to introduce changes so all citizens 
are able to exercise their right to vote. Ram�n Hern�ndez, member of the Board of 
Directives of the Coordination Organization of Persons with Disabilities of the 
Community of Madrid (Coordinadora de Minusv�lidos F�sicos de la Comunidad de 
Madrid) was one of the citizens not able to enter the voting booth. 

 

 

 


* This article originally appeared in DisabityWorld 4 (2000), 
http://www.disabilityworld.org/Aug-Sept2000/Governance/mission.html

 

 
Celia Leao is �On a Mission� 
in Brazilian Politics *

 

By Kay Schriner 

 

 

 

 

 

 

 

Celia Leao, a member of the Sao Paulo state parliament in Brazil, describes herself as 
being �on a mission� to improve the lives of disabled people in her country. 

 

As she explained in her presentation at Rehabilitation International's 19th World 
Congress in Rio de Janeiro in August, a disabled person who is elected to office runs the 
risk of being absorbed by the system, but must remember that the disabled person 
�doesn't have the right� to ignore this mission. �Without commitment, nothing is 
corrected, nothing is built,� according to Leao. A disabled legislator should work on 
issues that are important to disabled people, especially access to employment. 

 

First elected to office around 12 years ago, Leao said that it is a mistake to believe that 
being a disabled person helps you get elected. Some people may believe that people will 
vote for you if you use a wheelchair because they pity you, but in reality, running for 
public office as a disabled person is a burden. At times, there is open discrimination. 

 

Another way for disabled people to participate in governance is to stand for examination 
to civil service posts. Brazilian law requires that disabled persons be given an equal 
opportunity to sit for examination. The law also mandates that a percentage of civil 
service posts be filled by people with disabilities. Leao sees this as an important way for 
disabled citizens to effect social change within government. 

 

Whether by holding elected office or by becoming a civil servant, Leao believes that 
participation in governance is a significant part of implementing the sociopolitical model 
of disability. She will be even more optimistic about the future for disabled people, she 


says, when she sees disabled people taking a bigger part in political parties in Brazil. 
�This is where things happen.� 

 


* This article originally appeared in DisabilityWorld 26 (2005), 
http://www.disabilityworld.org/12-02_05/gov/flores.shtml 

 
Meeting the Challenges of Starting Over in Mexico: 
an interview with Victor Hugo Flores, Office of 
Representation for the Promotion and Social Integration for 
Persons with Disability, Office of the President, Mexico *

 

By Ilene Zeitzer, conducted during the 
Rehabilitation International World Congress 
in Oslo, Norway June, 2004 

 

 

 

 

 

 

 

Q. Please talk about the office that you�re the head of in the Office of the President. 
This is a new office with President Fox, is it not? So please describe how it works, what 
it was set up to do, what influence it has and so forth. 

 

A. Yes, the official name is the Office of Representation and Social Integration for 
Persons with Disabilities. In the year 2000, when President Fox invited us to work in the 
Office of Persons with Disabilities, he decided to take advantage of the momentum by 
creating three different smaller groups within the Cabinet. One cabinet is for social 
matters, another one is for security, and the other one is the economic cabinet. The 
correct name is the Human and Social Development Cabinet. It is the one that contributes 
the most ministers or secretaries in this area�he created 24 different ministries in 
different areas involved with certain aspects of administration. Once a week they have a 
working meeting. In each of these meetings, there are at the table, ministers and also the 
head of 16 different offices, specifically created by President Fox to coordinate policies 
over specific issues. 

 

NATIONAL COUNCIL ON DISABILITIES CREATED 

 

In the beginning, President Fox spent at least one hour with each of us and we were asked 
to develop a master plan. In those meetings we had the responsibility to present what we 


were going to do, how we were going to do it, and with whom. Our office, the office that 
coordinates public policy towards disabled people, asked in one of these meetings that 
each ministry develop one specific program including or focusing on disabled people. 
There is a very close relationship, between President Fox and the Office of Persons with 
Disabilities. President Fox also had a very close relation with different ministries, but 
mainly with five specific secretaries: the Health Secretary, the Labor Secretary, the 
Education Secretary, the Communications and Transportation Secretary, and the 
Secretary for Social Development. As a matter of fact, within two months, my office 
created the National Council on Disabilities in which these five ministries are members 
and support it. 

 

Q. So, the Ministers of Education, Communication and Transport, Labor, Social 
Affairs, and Health are all part of the National Council on Disability? 

 

A. Yes. Each Secretary is assigned a specific Vice Ministry so they can operate or be 
responsible directly for the operation of this National Council. With these five Ministries 
or Secretariats we developed inside the Council five different programs that didn�t exist 
before. We created a program for prevention and rehabilitation inside the Ministry of 
Health for all the national health system. The health system in Mexico is composed of 
five main institutions: the Social Security Mexican Institute; the Social Security for the 
Workers of the State i.e., federal workers; the health system specifically for Mexican 
Petroleum (PEMEX); and the health systems for the Navy; and for the Army. In this 
health system, we are trying first to create a system that enables doctors to become more 
aware about disabilities and how to prevent disabilities and also to ensure that the 
hospitals are accessible to disabled people. In order to develop this strategy we created a 
specific council inside the health system, namely the National Council to Prevent and 
Rehabilitate Disabilities. And there is also a head person responsible for each area of 
health who was given the responsibility to develop a plan for the next six years. The main 
strategy of the office was generally not to create or develop brand new programs, but 
instead to assign to each Ministry the main function that it should have and to work with 
them to resolve the issues or areas. For instance, we decided that we were not going to 
develop anything [new] regarding health or education, but rather that we would 
coordinate with the Ministry of Education so that they should become directly 
responsible for disabled people�s education policy. 

 

LATEST FOCUS: SELF-EMPLOYMENT IN RURAL AREAS 

 

Actually, now, three and a half years later, we have stopped creating new programs. We 
already have each program in place now, so we are just following up on each of these 
programs that we created within the National Council, with the health area or the 
education area and people with disabilities. As a matter of fact, we created not only five 
but seven national programs. The last program that we developed was launched on 
September 5, 2003 and it was a rural area program to support persons with disabilities. 


This program comes with a change in the law for the specific Ministry that handles all the 
rural area and agriculture area and the Congress assigned to this specific program about 
$250 million. This program we are promoting is for the persons with disabilities that live 
in rural areas�small areas in the country. It provides training, it provides technical 
support�the ministry pays someone to give training and also pays for an office to staff 
technical assistance to specific projects and to buy equipment. 

 

Q. This training is for employment or this is all kinds of training? 

 

A. It is a specific training, in order to create abilities in people to develop their own 
project. So they submit a project, and so they say, for instance, �I want to grow 
mushrooms. But to cultivate mushrooms, I need this. But I never had anything to do with 
mushrooms [before].� So they are given specific technical assistance, they train them 
how to grow mushrooms, how to grow the business and be accountable, how to develop 
the technology so they can meet a specific ambition. 

 

Q. So skills development? 

 

A. Yes, but this project not only supports agriculture for livestock and other types of 
farming, but also supports projects in skill development in services, starting a shop, or 
another type of enterprise, any kind of job development. 

 

HOW NEW PROGRAMS ARE BEING SET UP 

 

Q. So this is all through the Council that you have created? The funding comes 
through the National Disability Council that has been created, is that right? 

 

A. No. Each ministry comes with us to the National Council, and at the National Council, 
I think we missed that, we have 10 different working groups so we can sit down with 
people with disabilities, Disabled People�s Organizations, Non-Governmental 
Organizations, specialists, and specific people at universities also, company people and 
people from each Ministry. So the organizations and persons with disabilities say, �We 
need job opportunities in the rural area.� We start with one working group, �what do you 
need, how do you need it?� With this group, people will create a specific program and so 
the representative of the Ministry says, �Here we have this proposal for a program. In 
order to do it, we have to change this, and this and create this.� So they talk about it and 
figure out what they have to do, then they do it and they announce that they have a 
program. Then the Ministry does what they have to do in order to get the results that they 
need from Congress and then they start applying the program. 

 

Q. So you actually influence the programs the various Ministries create? 

 

A. Yes. 


 

Q. But you�re not creating the program per se you�re going to the Ministry of 
Education, the Ministry of Agriculture or whatever and saying, �We�re told by the 
disabled people organizations that you need to create a program that trains people on 
how to operate their own shops (or whatever it is)�? 

 

A. Yes, exactly, that is one area where we are active. But, we are also trying to get all of 
the objectives moving toward the same goal or place. Prior to the creation of our office, a 
lot of things were being done for disabled people, but everyone made them or created 
them without any common objective. Now with the new office, we have told them that 
we are creating a common objective�social integration of disabled people on the 
grounds of social development, not just on the basis of health matters or assistance. 

 

RESEARCH AND STUDIES 

 

Q. Do you do any studies? Do you actually commission any research studies or 
anything of that nature? 

 

A. We do not have the economic resources to hire the staff to create a specific study or 
investigation. But, if anything is working we try to take advantage of it, what isn�t 
working we see if we can create something new or try to reshape it. So there were 
different studies that were being done through the years. For instance, in the Education 
Ministry, we had an agreement with the Spanish Government and they gave funds 
between the Education Ministry of Mexico and the Spanish Government to create a 
national investigation. When the results were ready, we came along with the Council, we 
invited the Education Ministry and then we consulted with all the Disabled People�s 
Organizations and Non-Governmental Organizations about the results and the focus of 
this specific proposal or program. We are taking considerations in education, particularly 
in special education and in disabilities. And that�s what we are trying to enhance, but you 
have to take into account that we are a transitional government, so a lot of things that 
were done in the past were kind of too complicated to be taken again. Because, for 
instance, the person that coordinated the entire educational area for Mexico in the past, 
she was the head of the Mexico City area, and somehow politically she became a very 
powerful person and developed a lot of strategies, but she was at the same level as the 
State Education Secretary. So now we have a new law, a transparency law that says that 
we should do what the law says, not what is convenient politically. So we developed the 
program and now all the states are working together with the same objective. 

 

Another thing that we do is those responsible for each program ask us for specific support 
to talk with the Minister or the Secretary to resolve issues, in the development of a 
project or to start a new activity. Those responsible for this program, although it is a very 
important program, do not always have direct communication with their own Secretary, 
they are on different levels. One of my main tasks is that I can open the channel because I 


am the only one who is on the Secretaries� calendars. I speak with the Secretaries every 
week, every now and then I have in person meetings with them, so I learn what�s 
happening with the program and report directly what�s going on. I help with that by 
internal lobbying, with solutions. 

 

IMPACTING POLICIES: THREE DIFFERENT �MOMENTS� 

 

Q. Can you point to some ways in which the creation of this office has changed policy, 
impacted policy? 

 

A. Yes, we can see in Mexico three different moments. The first moment was when the 
public council for disabled people was created, or funded, as social assistance. The 
second moment was when the office, the social assistance office, starting creating and 
assigning specific problems to different ministries so that the public policy for disabled 
people is not only the responsibility of one area as it used to be, but is in different 
ministries. So it�s a very balanced strategy, not a burden, but a strategy and task among 
different ministries. Our concept specifically now is that the public policy towards 
disabled people cannot be solved by only one institution, as in the past, now we can 
assign a specific task and strategies for different Ministries so we can come up with a 
better and integrated solution. The third moment that we see in the future of Mexico is 
that these programs should become long-term programs and that Mexico shall have a law 
for disabled people. This concept will guarantee that each Ministry will not have isolated 
efforts to deal with disability, but integrated and coordinated efforts and strategies, plans 
and programs for the long-term. In this scenario it is quite possible that this office will 
disappear at some point because it will have done what it was meant to when it was 
created and it won�t be needed anymore. 

 

 


 Selected Articles and Reports 
Published in DisabilityWorld 2000�2005: 
LATIN AMERICA 

 

 

The following lists selected news articles and reports from Latin America, 
published in DisabilityWorld (www.disabilityworld.org) 2000�2005, 
documenting the rise of activities pertaining to 
disability and good governance in that region. 

 

 

 

 

LATIN AMERICAN REGION 

 

Latin American Meeting in Chile Adopts Human Rights Plan 

The Santiago Manifesto: to build accessible democracy in Ouram�rica 

DisabilityWorld 7 (2001) 

. http://www.disabilityworld.org/03-04_01/gov/chile.shtml

 

On March 18, 19 and 20, 2001, Santiago de Chile was a warm and friendly stage for a 
meeting of Latin American leaders with disabilities trying to broaden knowledge and 
exchange experiences so as to be more effective within our countries and improve living 
conditions for millions of people with disabilities living in Ouram�rica. During the 
meeting, we agreed that it is necessary for all our countries to deepen their awareness of 
the realities of the lives of people with disabilities. Census studies, surveys, and research 
in every field are absolutely necessary to rigorously and objectively measure a reality that 
is not only characterized by social segregation, but is also dominated by vagueness. This 
vagueness prevents a full comprehension of the existing problems through precise 
figures. 

 

Alarming increase of poverty in Latin America 

By Luis Fernando Astorga Gatjens and Jaime L�pez, DisabilityWorld 16 (2002) 

. http://www.disabilityworld.org/11-12_02/gov/poverty.shtml

 

There are more than 200 million poor people in Latin America and this figure is expected 
to increase from 43% in 2001 to 44% in 2002, stated the November 7, 2002 study of the 
Commission of Economics for Latin America (Comisi�n Econ�mica para Am�rica Latina 


(CEPAL). These figures are upsetting for the majority of the 500 million people of Latin 
America, particularly for the increasing number of persons with disability living in our 
region. The World Health Organization and the Pan-American Health Organization have 
stated that 10% of the population of the presents disabilities. Using this conservative 
percentage, there are 50 million persons with disabilities in Latin America. 

 

Organization of American States must work to reduce disability related discrimination, 
says RIADIS 

By Luis Fernando Astorga Gatjens, DisabilityWorld 16 (2002) 

. http://www.disabilityworld.org/11-12_02/gov/oas.shtml

 

Once the eleventh Member State of the Organization of American States deposits the 
instrument of ratification for the Inter-American on the Elimination of All Forms of 
Discrimination Against Persons with Disabilities (Convenci�n Interamericana para la 
Eliminaci�n de Todas las Formas de Discriminaci�n contra las Personas con 
Discapacidad), this international body must appoint a Special Committee Against 
Discrimination. 

 

IV International Conference on the Rights of Persons with Disabilities held in Cuba 

By Luis Fernando Astorga Gatjens, DisabilityWorld 18 (2003) 

. http://www.disabilityworld.org/04-05_03/news/cuba.shtml

 

The IV International Conference on the Rights of Persons with Disabilities was held in 
Cuba on May 6�11 at the Palacio de Convenciones in Habana. Some 225 participants 
were involved, representing organizations of persons with disabilities and professionals 
working in the field of disabilities, from 12 countries of the Americas and Europe. The 
organizers defined the overarching objectives as �a range of needs and demands of 
persons with disabilities that are also linked with those fields of activities calling for more 
urgent efforts to provide for the right to equal opportunities for persons with disabilities 
as other citizens. This fields of activities include, include among others, work, education, 
accessibility, the elimination of barriers, prevention, protection, rehabilitation, and 
making new technologies available for all.� 

 

14 Countries Ratified Inter-American Convention on Discrimination 

By Luis Fernando Astorga Gatjens, DisabilityWorld 19 (2003) 

. http://www.disabilityworld.org/06-08_03/gov/interamerican.shtml

 

Fourteen countries of the American continent have already ratified the Inter-American 
Convention on the Elimination of All Forms of Discrimination Against Persons with 
Disabilities. Colombia and Ecuador are the most recent states to ratify. This Convention 
was approved by the General Assembly of the Organization of American States (OAS), 
on June 6, 1999, in the city of Antigua, Guatemala and the ratification process was 
opened on June 8. This is the only convention of its kind in the world. No other regional 


organization has adopted a specific treaty to protect and foster human rights of disabled 
persons. This Inter-American Convention currently is the only international and legally 
binding instrument to serve as a baseline for the new International Convention of Human 
Rights for Persons with Disabilities that is currently being considered by the United 
Nations, (Resolution 56/168, on December 19, 2002), on the initiative of Mexico. 

 

2004: The Ibero-American Year of Persons with Disabilities 

By Luis Fernando Astorga Gatjens, DisabilityWorld 21 (2003) 

. http://www.disabilityworld.org/11-12_03/gov/iberoamerican.shtml

 

The XII Ibero-American Summit of Heads of State, Santa Cruz de la Sierra, Bolivia, 
November 14 to 15, 2003, proclaimed 2004 the Ibero-American Year of Persons with 
Disabilities. This decision was adopted based on a proposal presented by the government 
of Spain, which in turn was responding to an initiative proposed by the Ibero-American 
Network of Organizations of persons with, Disabilities and their Families (Red 
Iberoamericana de Organizaciones de Personas con Discapacidad y sus Familias, 
RIADIS) and the Spanish Committee of the Representatives of Persons with Disabilities 
(Comit� Espa�ol de Representantes de Personas con Discapacidad (CERMI). The 
declaration of the heads of state concerning the Ibero-American Year of Persons with 
Disabilities is found at Section 39: �With the purpose of increasing understanding and 
awareness of the issues regarding persons with disabilities and gaining support for 
institutions and policies on the dignity, human rights, and the quality of life of persons 
with disabilities, we proclaim 2004 as the Ibero-American Year of Persons with 
Disabilities.� 

 

2004: Year of the Emergence of Persons with Disabilities in Ibero-America 

By Antonio Almoguera, CERMI, DisabilityWorld 24 (2004) 

. http://www.disabilityworld.org/06-08_04/gov/emergence.shtml

 


In Santa Cruz de la Sierra, Bolivia, Ibero-American disability organizations have defined 
the objectives and lines of action for 2004, the Ibero-American Year of Persons with 
Disabilities. The governments of the member countries have pledged to approve far 
reaching national plans for this year, which will end with a regional conference of 
ministers in the field of disability, in Costa Rica in November, coinciding with the XIV 
Summit of Presidents and Head of State of Ibero-America. This 2004 cannot really be a 
year of celebration in a continent where developing countries are very far from the reality 
of welfare for all. Here persons with disabilities lack equal opportunities, mainly because 
there are almost no social and work integration programs, and there are no permanent 
plans toward accessibility and full enjoyment of human rights for all. Here, the majority 
of the population subsists under the hardships of poverty and governmental institutions 
are not efficient at meeting the needs of the people who need more help. 

 

 

ANTIGUA & BARBUDA 

 

The Antigua & Barbuda Association of Persons with Disabilities works on a Draft 
National Policy on Disability for Antigua and Barbuda 

DisabilityWorld 21 (2003) 

. http://www.disabilityworld.org/11-12_03/gov/briefly.shtml

 

The Antigua & Barbuda Association of Persons with Disabilities has been working on a 
Draft National Policy on Disability for Antigua and Barbuda, identifying a number of 
areas for discussion related to the Antigua and Barbuda Constitution including the 
inaccessible format and language of the current Constitution, physical access, equal 
participation by disabled people in national life, and the inclusion of disability as grounds 
for protection from discrimination. The document has been presented to the 
Constitutional Review Commission but may take five years to fully implement, so the 
ABAPD has decided to work on a Disability Act, which would take less time to 
implement and would be more effective in the long run. A copy of the Draft National 
Policy on Disability in its entirety is available on the ABAPD website at 
http://www.abapd.org . To read the original report in the Disability Tribune, please visit 
http://www.daa.org.uk/e_tribune/e_2003_09.htm#7 . 

 

 

ARGENTINA 

 

Argentina: Senate presented a complaint about Ley de Fomento a PyMES (Financing 
of PyMES Act) 

DisabilityWorld 3 (2000) 

. http://www.disabilityworld.org/June-July2000/Governance/PyMES.htm

 


On Thursday 29, 150 people with disabilities from Buenos Aires and the provinces 
marched in front of the Senate to show their opposition to the financing of PyMES with 
moneys from the disabilities budget. The activity was supported by 68 countrywide 
organizations. During the previous evening (June 28), representatives from the Red por 
los Derechos de las Personas con Discapacidad (Disability Rights Network - REDI) 
expressed their points of view at the Senate's PyMES Commission's Public Hearing. 
Speaking for REDI, Eduardo Joly, a Steering Committee member, social scientist, and 
Fundaci�n Rumbos' President, stated that �Articles 44 and 45 of PyMES Act lower the 
fines imposed on Bad Checks Act by 50% and that this decrease directly affects all 
disabilities programs.� 

 

Being disabled in Argentina 

By Maria Veronica Reina Romero. This article first appeared in the March 2002 
Disability Tribune, a regular periodical of Disability Awareness in Action. 

DisabilityWorld 14 (2002) 

. http://www.disabilityworld.org/06-08_02/gov/argentina.shtml

 

In December of 2001 Ana Mar�a Martinez, 36 years old, and her daughter Violeta, 8 
years old, both disabled people, were surrounded by the police at the ex-provincial and 
privatized BERSA Bank of Concordia, in the Province of Entre Rios, Argentina. The 
woman had wanted to cash a check from the provincial health insurance agency for 
government employees. This check was a monthly special subsidy for anticonvulsive 
drugs for Violeta, who has severe cerebral palsy. At that time, Minister of Economy 
Cavallo had ordered an economic restriction named after the corralito (little courtyard), 
that did not allow people to take money out of their own bank accounts and complicated 
official check cashing. The corralito led to a crisis that ended in the resignations of 
Cavallo and President De La Rua. 

 

Argentina: Demonstration Held to Support Prompt Legislative Approval of Projects 

Edited by Luis Fernando Astorga Gatjens with information provided by FORO-PRO, 

DisabilityWorld 17 (2003) 

. http://www.disabilityworld.org/01-03_03/gov/argentina.shtml

 

The fence surrounding the building of the Congress of Argentina in Buenos Aires, was 
removed for several hours in the morning of October 22, when a crowd of persons with 
diverse disabilities, occupied the front part, during a demonstration: Campaign to 
Recover the National Fund for Persons with Disabilities (Campa�a Recuperaci�n del 
Fondo Nacional para Personas con Discapacidad). Demonstrators with disabilities 
received full support from grassroots institutions and non- governmental organization in 
their struggle to have the three legislative proposals approved. The Permanent Forum for 
the Promotion and Defense of the Rights of Persons with Disabilities (Foro Permanente 
para la Promoci�n y la Defensa de los Derechos de las Personas con Discapacidad) was 
able to obtain a public commitment to support their cause by an important group of 


legislators. 

 

Legislators of Buenos Aires Pass Law to Improve Physical Accessibility 

By Eduardo Joly and Silvia Coriat and edited by Luis Fernando Astorga Gatjens, 

DisabilityWorld 17 (2003) 

. http://www.disabilityworld.org/01-03_03/gov/buenosaires.shtml

 

Last December the Congress of Argentina approved, by unanimous vote the Amendment 
to the Construction Code for the City of Buenos Aires Law 962 (Modificaci�n del 
C�digo de Edificaci�n de la Ciudad Aut�noma de Buenos Aires (Ley 962) introducing 
improved accessibility provisions which had been previously eliminated by the Local 
Government of Buenos Aires. This law was the results of several years of work 
undertaken by the Accessibility Division of the of Rumbos Foundation (Fundaci�n 
Rumbos) and the Disability Rights Network for Disability Rights (Red por los Derechos 
de las Personas con Discapacidad, REDI) under the direction of Architect Silvia Coriat. 

 

Argentina: President of a Social Institute Fined for Not Complying with Disability Law 

From INFOCIVICA, Productora de Noticias C�vicas, DisabilityWorld 24 (2004) 

. http://www.disabilityworld.org/06-08_04/gov/argentina.shtml

 

In Argentina, a judge decided to fine the President of the Institute for Medical Assistance 
of Buenos Aires (Instituto de Obra M�dico Asistencial de la Provincia de Buenos Aires, 
IOMA), Alberto Mazza. This case, in the defense of the rights and protections entitled for 
a child with disabilities, is conducted by a member of the Network of Voluntary Lawyer 
of the Foundation for Citizen Power (Red de Abogados Voluntarios de la Fundacdi�n 
Poder Ciudadano). In Argentina, the Honorable Luis Arias, the Judge of the Number 1 
Administrative Contentious Court of La Plata, ruled that the President of the Institute for 
Social Assistance (Instituto de Obra M�dico Social de la Provincia de Buenos Aires, 
IOMA), failed to provide the ordinary services of the institution, pursuant to the 
corresponding disability law. Mr. Maza must pay a fee of 1,600 pesos, corresponding to 
50 pesos for each day that the request of the plaintiff was delayed without justification. If 
the President does not comply, his salary will be retained. 

 

 

BRAZIL 

 

The Federal Labor Prosecution in Brazil and the Rights of Persons with Disabilities 

By Denise Lapolla, DisabilityWorld 2 (2000) 

. http://www.disabilityworld.org/April-May2000/Employment/federal.htm

 

The Federal Labor Prosecution in Brazil is empowered to defend social labor rights, as 
defined in the Constitution. In Brazil there is a federal law�Law n� 8.213/91�that 
obliges companies with more than 100 employees, to reserve a percentage of its jobs for 


persons with disabilities and to the ones who have received rehabilitation. So, if a 
company has from 100 to 200 job posts, 2% of them will be offered to these people. 
From 200 to 500 the proportion goes to 3%. From 500 to 1000 raises to 4% and from 
1000 on, 5%. Considering it a priority of the present administration, the Labor 
Prosecution offices in all the states of Brazil have been notifying the companies to 
reserve this quota. 

 

Brazilian Advocacy Group Recognized for its work on Human Rights 

DisabilityWorld 2 (2000) 

. http://www.disabilityworld.org/April-May2000/Governance/Brazil.htm

 

The Brazilian government officially recognized and accepted the Human Rights demands 
presented by the patient advocacy group �Projeto F�nix: National Pro-Mental Health 
Association�. This came after intensive efforts developed by the Association in a 
grassroots National Campaign for the Human and Civil Rights of Individuals Suffering 
from Mental Illnesses. Projeto F�nix`s most recent Newsletter published an official notice 
delivered by the Brazilian Health Ministry guaranteeing government support for the 
primary demand Projeto F�nix presented in its Campaign�the mandatory review of all 
involuntary psychiatric hospitalizations. The notice went on to promise to rewrite 
currently proposed mental health legislation respecting other demands of the group 

 

Brazil: Commission to Include Rights of Disabled Persons 

DisabilityWorld 10 (2001) 

. http://www.disabilityworld.org/09-10_01/gov/hr.shtml

 

To defend all citizens facing violation of their civil rights, with special attention for 
people with disabilities, children, adolescents, and the elderly, is the goal of the new 
board of directors of the Brazilian Bar Association's Human Rights Commission, recently 
elected for a three-year term. According to chairperson Lauro Schuch, the Commission 
plans to set up specific internal sub-committees to deal with children and adolescents, the 
elderly, people with disabilities, and citizens' rights and justice, among other areas. 

 

Brazil: Banks obliged to stop discriminating against persons with disabilities 

By Digital Solidarity, DisabilityWorld 15 (2002) 

. http://www.disabilityworld.org/09-10_02/access/brazilbanks.shtml

 

To go to the bank, open an account, and receive the check book is a tedious task and 
almost impossible for blind persons in Brazil. Many persons with disabilities complain 
about the lack of accessibility to effective bank services. At the same time, bank 
personnel complain because persons who are blind or visually impaired are not able to 
read and therefore are not deemed responsible for what they sign. There have been so 
many complaints of this type that the Labor Affairs Office of the State of Sao Paulo, the 
General Attorney and the Department of Justice issued a Memorandum to the Brazil 


Federal Reserve Bank, calling for the establishment of a series of measures within the 
banking system to improve services for persons with disabilities. 

 

CHILE 

 

Chile: limited participation of persons with disabilities 

By Mar�a Soledad Cisternas Reyes, DisabilityWorld 14 (2002) 

. http://www.disabilityworld.org/06-08_02/gov/chile.shtml

 

An investigation conducted by Mar�a Soledad Cisternas Reyes, a Chilean lawyer who is 
blind and the Director of the Disability Program of Diego Portales University, reveals 
how many potential voters with disabilities in Chile, are prevented from voting or at least 
are not motivated to participate in electoral processes because of existing social and 
physical barriers. Her study, published at the end of 2001 in The Chilean Jurist, examines 
the ways in which the lack of accessibility to voting and related services of this 
democratic right, prevent or limit persons with disability from full citizenship in her 
country. 

 

Chile Holds Consultation on U.N. Disability Convention 

By Fondo Nacional de Discapacidad, DisabilityWorld 21 (2003) 

. http://www.disabilityworld.org/11-12_03/gov/chile.shtml

 

In July 2003, the National Disability Fund of Chile, the Directorate of Multilateral 
Policies of the Ministry of Foreign Affairs of Chile, and the Regional Representative for 
the Latin America and the Caribbean of the United Nations High Commissioner on 
Human Rights, organized a consultation workshop on the proposed United Nation 
International Convention on the Human Rights of Persons with Disabilities. The purpose 
was to analyze and record the opinions and comments from Chilean civil society on this 
forthcoming international instrument. This workshop was part of efforts to promote the 
country's National Policy on Social Integration of Persons with Disabilities. 

 

 

COLOMBIA 

 

Colombia Makes an Effort to Ratify the Inter American Convention 

By Hernando Ayala Melgarejo, DisabilityWorld 10 (2001) 

. http://www.disabilityworld.org/09-10_01/gov/ratify.shtml

 

Colombia's Ministry of Foreign Affairs has committed itself to make an effort and push 
the legislative process so as to ratify the �Inter American Convention for the Elimination 
of all forms of Discrimination against people with Disabilities.� That office is trying to 
draft a bill whereby the country would formalize, in its juridical process, the 
commitments it did assume as a signatory of the Convention. 


 

Colombia: Public Policy 

By Hernando Ayala Melgarejo, DisabilityWorld 10 (2001) 

. http://www.disabilityworld.org/09-10_01/gov/policy.shtml

 

Colombian Disability Policy has been being discussed during the previous 20 months 
under a work structure framed by National Groups of Inter-Area Linkage formed by 
representatives from government institutions and members of national non governmental 
organizations of and, for people with disabilities. These have five components: 
prevention, rehabilitation/habilitation, education, job and society integration, and 
accessibility to the physical environment, transport, information, sports and culture. 

 

Encounter in Colombia: Presidential Candidates Promise New Disability Policy 

By Hernando Ayala Melgarejo, DisabilityWorld 13 (2002) 

. http://www.disabilityworld.org/04-05_02/gov/columbia.shtml

 

Presidential candidates in Colombia gave their word to the disability community that, if 
elected, they would ensure that disability policy become a higher item on the national 
agenda. A disability debate among the leading candidates in Colombia was held on 
December 3, the International Day of Disabled Persons. A solemn commitment backed 
up by words of honor toward validating the rights of the population with disabilities, was 
among the results of the gathering of three presidential candidates with the leadership of 
Colombians with disabilities. 

 

Colombia Pushes to Ratify the Inter-American Convention 

By Hernando Ayala Melgarejo, DisabilityWorld 13 (2002) 

. http://www.disabilityworld.org/04-05_02/gov/columbiaiac.shtml

 

Colombia's Ministry of Foreign Affairs has committed itself to make an effort and push 
the legislative process so as to ratify the �Inter American Convention for the Elimination 
of all forms of Discrimination against People with Disabilities.� That office is trying to 
draft a bill whereby the country would formalize, by its judicial process, the 
commitments it assumed as a signatory of the Convention. 

 

Colombia: Development of Disability Public Policy 

By Hernando Ayala Melgarejo, DisabilityWorld 13 (2002) 

. http://www.disabilityworld.org/04-05_02/gov/columbiapolicy.shtml

 

The Colombian Disability Policy has been discussed during the previous 20 months 
within a structural framework provided by the National Groups of Inter-Area Linkage, 
formed by representatives from government institutions and members of national non-
governmental organizations of and for people with disabilities. The disability policy 
considerations can be broken down into five components: prevention, 


rehabilitation/habilitation, education, employment and societal integration, and 
accessibility to the physical environment, transport, information, sports and culture. 

 

Colombia: Bogota bus company will be made completely accessible by the year 2004 

By Luis Fernando Astorga Gatjens; source, DISNNET Press, DisabilityWorld 15 (2002) 

. http://www.disabilityworld.org/09-10_02/access/columbiabus.shtml

 

Daniel Berm�dez, a person with a physical disability and user of public transportation, 
was recently victorious in court. Thanks to his struggle the Constitutional Court of 
Colombia ordered the Bogot� bus company, Transmilenio, to provide effective 
accessibility for persons with reduced mobility. The Transmilenio offers massive 
passenger transportation using articulated buses in cities like Curitiba, Brasil, where it 
originated, and in Bogot�, where it operates like a metro system. 

 

Colombian National Institute for the Blind presents its 2002�2006 disability policy 

DisabilityWorld 16 (2002) 

. http://www.disabilityworld.org/11-12_02/gov/columbianib.shtml

 

Within this framework, we must mention the contribution made by the National Institute 
for the Blind of Colombia, acting as a consultant to the government. The Institute 
presented a proposal for the public policy covering persons with physical, mental, 
auditory and visual disabilities for the next four years (2002�2006). 

 

Colombia: proposed national disability policy gains strong governmental support 

From DISNNET Press: 582; edited by Luis Fernando Astorga Gatjens, 

DisabilityWorld 16 (2002) 

. http://www.disabilityworld.org/11-12_02/gov/columbia.shtml

 

Several actions have been performed and others are planned as part of the new 
Colombian public policy in disability. These efforts are part of the Unified Plan for 
2003�2006 undertaken by the new administration of President Uribe V�lez. The objective 
of the plan is to define a public policy on disability. The Colombian Congress is studying 
the approval of a National Disability System, with two projects, presented by Senator 
Jairo Clopatofsky Ghisays, the author of the 1997 Law 361 on the integration of persons 
with disabilities. At the same time, the government is finishing up the technical and 
methodological aspects, gathering information from all sectors developed in recent years. 

 

Colombia: Disability Acquired because of Landmines and other Explosive Devices: A 
Puzzle to Assemble 

From DISNNET Press, with Adriana Restrepo Leong�mez, DisabilityWorld 19 (2003) 

. http://www.disabilityworld.org/06-08_03/gov/columbia.shtml

 

After one year of studying 15 departments and 66 municipalities, the Integral 


Rehabilitation Center of Colombia (Centro Integral de Rehabilitaci�n de Colombia, 
CIREC), prepared an assessment on the situation of persons having a disability as a result 
of armed conflicts in this South American country. The Center's report indicates that 
1514 persons have acquired their disabilities as a consequence of violence in Colombia. It 
also mentions how many of these persons have been abandoned, mainly because of a lack 
of opportunities for rehabilitation and social integration in their communities. With the 
participation of the government of Colombia and international cooperation, the Center 
provides Community Based Rehabilitation programs for those injured by landmines and 
other warfare artifacts. 

 

Colombia: Senator Reflects on Life with One Leg 

By Antonio Navarro Wolf, Senator, Republic of Colombia, DisabilityWorld 21 (2003) 

. http://www.disabilityworld.org/11-12_03/il/oneleg.shtml

 

The first thing I have to say about having to go forward in my life on just one leg is 
obvious: I used to have two. Then I provide some details about how these changes 
happened. We were working toward peace negotiations with President Belisario Betancur 
in a Cali cafeteria when a grenade exploded. I was at the Valle University Hospital for 20 
days, well attended but in a serious condition. Then, thanks to the support of some 
journalists and some well-known personalities, I was taken to Mexico for medical 
treatment which saved my life. 

 

 

COSTA RICA 

 

New Human Rights Forum for People with Disabilities Established in Costa Rica: 
Building Social Activism 

By Luis Fernando Astorga Gatjens, DisabilityWorld 7 (2001) 

. http://www.disabilityworld.org/03-04_01/gov/costarica.shtml

 

Throughout history, as people with disabilities, we have had to deal with daily aspects of 
a socio-cultural ambiance that underestimates and overprotects us, discriminates against 
and marginalizes us. A more than a century old Costa Rican democracy, with all its gains 
and limits, has not even been experienced by the thousands of citizens with a disability. 
Inaccessibility to the different existing services has been more a norm than an exception. 
Although filled with good intentions, public assistance and private charity have 
dominated the national scene, thereby, limiting autonomy and development for people 
with disabilities. In Costa Rica, as people with disabilities, we enjoy an advanced 
legislation that protects our rights. The Bill for Equality of Opportunities for People with 
Disabilities, Bill 7600, was published in May 1996. The new American Convention for 
the Emancipation from All Forms of Discrimination has also been ratified by Costa Rica. 
In spite of this, there is an enormous void between the legal aspects and reality, and the 
daily experiences of an immense majority of people with disabilities. 


 

Disability March: 1500 Costa Ricans demand equal opportunity 

By Luis Fernando Astorga Gatjens, DisabilityWorld 8 (2001) 

. http://www.disabilityworld.org/05-06_01/gov/costarica.shtml

 

On Friday 1 June 2001, nearly 1,500 people with disabilities marched on Second Avenue 
in San Jose, Costa Rica. Our demand: equal opportunity. The wide Avenue was filled 
with a picturesque group of people that moved on wheelchairs, walked on crutches or 
using white canes, or were guided by dogs, or had someone translate what was heard into 
sign language. The successful and enthusiastic demonstration was organized by FORO 
POR LOS DERECHOS HUMANOS DE LAS PERSONAS CON DISCAPACIDAD, the 
Human Rights Forum for People with Disabilities. The main goal of the demonstration 
was to celebrate the five-year anniversary of Law 7600, the law on equal opportunity for 
people with disabilities, passed by the Costa Rican congress in 1996. 

 

Human Rights of Costa Rican Children with Disabilities 

By Luis Fernando Astorga Gatjens, DisabilityWorld 10 (2001) 

. http://www.disabilityworld.org/09-10_01/children/costarica.shtml

 

In spite of the progress in legal aspects concerning disability in the country, Costa Rican 
children with disabilities suffer the same discrimination and social isolation that adults 
do. Nearly 400 thousand of the 4 million inhabitants of this Central American country are 
people with disabilities. Approximately 21% of them are younger than 18. As the U.N. 
Special Rapporteur for Persons with Disabilities, Bengt Lindqvist, from Sweden reported 
during his visit to the country two years ago, Costa Rica has an advanced legislation with 
a limited enforcement. Essentially, this situation translates into human rights violations, 
especially in regards to economic, social and cultural rights. 

 

Costa Rican Forum Establishes Human Rights Network 

By Luis Fernando Astorga Gatjens, DisabilityWorld 12 (2002) 

. http://www.disabilityworld.org/01-03_02/gov/costarica.shtml

 

From Sunday 2 to Friday 7 of December 2001, the Costa Rican Human Rights Forum for 
Persons with Disabilities and the U.S. based Disability Rights Education and Defense 
Fund conducted an intensive Training Workshop. Training was provided to 35 persons 
with disabilities from different parts of the Costa Rican geography participated. The 
participants, women and men, with different disabilities and all levels of social-economic 
status, met for a whole week, to enhance their theoretical and practical knowledge about 
human rights and to improve their advocacy and public education skills. 

 

Costa Rica Holds First Presidential Debate on Disability 

By Luis Fernando Astorga Gatjens, DisabilityWorld 12 (2002) 

. http://www.disabilityworld.org/01-03_02/gov/debate.shtml


 

San Jos�, Costa Rica, December 10, 2001�On December 3, International Day of Persons 
with Disabilities, a full-house Presidential Debate on Disability was held in San Jos�, the 
countries capital. Ten of the 13 presidential candidates participated with their 
perspectives regarding the Costa Rican campaign of February 2002. The activity, which 
lasted 3 hours, was held at the University of Costa Rica's Recreational Center, where 
adaptations were made 2 weeks in advance to make it accessible for persons with 
disabilities. Around 400 people with disabilities, their families and friends crowded the 
place, hoping to obtain concrete answers from presidential candidates regarding what 
would they do with respect to disability concerns in Costa Rica. 

 

Costa Rica: More shadows than lights regarding disability issues 

By Luis Fernando Astorga Gatjens, DisabilityWorld 14 (2002) 

. http://www.disabilityworld.org/06-08_02/gov/costarica.shtml

 

On May 8, during a simple ceremony, the now ex-president of the Republic, Miguel 
Rodr�guez Echeverr�a, made way for the new President, Abel Pacheco de la Espriella, 
who won the election on April 7. Both belong to the same political party, the Unidad 
Social Cristiana (Social Christian Unity Party). This is a good time to evaluate balances 
and define our perspectives for the country on several issues. But, we are more interested 
here, in assessing what is the status of disability in our country, after the four-year term of 
President Rodr�guez, and to provide some insights regarding what the new 
administration, headed by President Pacheco, could do. 

 

Costa Rican Public Agency Responsible for Disability Issues Has Not Yet Assumed its 
Directing Role 

By Luis Fernando Astorga Gatjens, DisabilityWorld 17 (2003) 

. http://www.disabilityworld.org/01-03_03/gov/costaricacouncil.shtml

 

On May 29, 1996, when the Law of Equal Opportunities for Persons with Disabilities 
entered into force, it was thought that many things were going to change for the 
population of persons with disabilities in this Central American country. This law 
establishes that the Costa Rican Council of Rehabilitation and Special Education must 
assume the directing responsibility on disability issues in the country. If it had done so, 
this collegiate body of government institutions and private organizations, would have 
been more efficient in supervising due compliance of the dispositions of Law 7600 and 
other pertinent disability related legal instruments. According to the law, the Council of 
Rehabilitation had to supervise the work performed by all Costa Rican public and private 
service organizations. Unfortunately, the supervising role of the Council of Rehabilitation 
and Special Education has been so timid and halting that many of the agencies which had 
to be supervised, during the past six years and a half, to verify and demand their full 
compliance with disability related aspects such as accessibility to physical space right to 
information and communication, and equal opportunities to services, have not been met. 


In brief, because the Council of Rehabilitation and Special Education has not demanded 
compliance, particularly, from the other government agencies, there have not been 
relevant improvements on the living conditions of persons with disabilities in the country. 

 

There is no clear government commitment toward the population of persons with 
disabilities in Costa Rica 

By Luis Fernando Astorga Gatjens, DisabilityWorld 17 (2003) 

. http://www.disabilityworld.org/01-03_03/gov/costarica.shtml

 

This December 3, International Day of People with Disabilities, is an appropriate moment 
to reflect on the real compliance with the Costa Rican Law on Equal Opportunities for 
Persons with Disabilities, Law 7600. This Law was approved on May 1996 and 
Regulations were approved in March, 1998. The hopes and expectation of the more than 
400,000 persons with disabilities and their families in the country are still unmet. 
Furthermore, the expectations that were generated in the disability community when the 
President Abel Pacheco mentioned the topic in two occasions during his inauguration 
speech, last May 8, gradually vanished. Concrete actions were expected to allow real 
advances, pursuant to the dispositions of the Law 7600, yet these are not implemented. 

 

Costa Rica: Promising Negotiations by Persons with Disabilities and the Government 

By Luis Fernando Astorga Gatjens, DisabilityWorld 19 (2003) 

. http://www.disabilityworld.org/06-08_03/gov/costarica.shtml

 

As an immediate result of the 1000 persons protest, conducted by the organizations of 
persons with disabilities in Costa Rica, the government was quick to respond by initiating 
a negotiation process with representatives of these organizations. The objective was to 
provide effective solutions to the 10 point petition presented by the disability community. 
After a march, the demonstrators gather in front of the Presidential House, on May 29, in 
Zapote, San Jos�, the capital of Costa Rica. This public event was also held as a way to 
celebrate the seventh anniversary of the approval by Congress of the Costa Rican Equal 
Opportunities Law for Persons with Disabilities (Law 7600), which became part of our 
legislation on May 29, 1996. The demonstrators included Costa Rican Ombusdman Jos� 
Manuel Echandi and Members of Congress Rodrigo Alberto Carazo of the Citizen Actino 
Party (Partido Acci�n Ciudadana, PAC) and Federico Vargas of the Social Christian 
Unity Party (Partido Unidad Socialcristiana /PUSC). 

 

Costa Rican Government Insurance Institution Includes Sign Language on its 
Publicity 

By Luis Fernando Astorga Gatjens, with information from the Costa Rican National 
Insurance Institute Bulletin, DisabilityWorld 20 (2003) 

. http://www.disabilityworld.org/09-10_03/gov/costarica.shtml

 

The Costa Rican Sign Language �LESCO� has been included by the National Insurance 


Institute on its campaigns. �We are the first government institution, an perhaps we are 
even ahead of the private sector, to include LESCO in our publicity. This is very 
satisfactory for us, now we are reaching about 80.000 deaf persons in Costa Rica,� says 
Mr. German Serrano Pinto, Executive President of this state owned insurance company. 

 

Costa Rica: Efforts of Disabled Citizens Yield Results 

By Luis Fernando Astorga Gatjens, DisabilityWorld 21 (2003) 

. http://www.disabilityworld.org/11-12_03/gov/costarica.shtml

 

A new agreement to improve the conditions of access to education, work, public 
transportation, and housing for people with disabilities has been reached by 
representatives of the organizations of persons with disabilities and the Council of Social 
Affairs of the Government of Costa Rica. Lawyer Lineth Sabor�o, Vice President and the 
Coordinator of the Council of Social Affairs, explained that this agreement is the result of 
a comprehensive negotiation by the representatives of the organizations of persons with 
disabilities and social sector institutions. 

 

 

ECUADOR 

 

Ecuador's President Receives International Roosevelt Award at U.N. Headquarters 

DisabilityWorld 15 (2002) 

. http://www.disabilityworld.org/09-10_02/news/rooseveltaward.shtml

 

President Gustavo Noboa of the Republic of Ecuador received the sixth annual Franklin 
Delano Roosevelt International Disability Award on behalf of his country at a United 
Nations ceremony in September. The Award is sponsored by the World Committee on 
Disability and the Franklin and Eleanor Roosevelt Institute. It is presented annually to a 
nation that makes noteworthy national progress toward the goal of the United Nations 
World Programme of Action Concerning Disabled Persons: the full and equal 
participation of the world's 600 million people with disabilities in the life of their 
societies. 

 

The Roosevelt Award for Ecuador: an opinion 

By Daniel Wappenstein, DisabilityWorld 17 (2003) 

. http://www.disabilityworld.org/01-03_03/gov/ecuador.shtml

 

The Roosevelt Award was established in 1995 and is destined for those countries making 
important contributions in the disability field. The United Nations World Action Program 
for Persons with Disabilities has full participation of persons with disabilities as a major 
goal. This is how it was understood by the government of South Korea. This nation was 
awarded with U.S. $50,000 and it decided to boost the fund, making it equivalent to a 
million and a half dollars. Seven years later the Roosevelt Award is given to Ecuador, but 


contrary to the purposes, the government decides to use the money to conduct a national 
mass media campaign to explain about the trip of the President to New York. The 
problem is that the message does not contemplate the actions of the government on 
disability, simply because there are none. 

 

 

EL SALVADOR 

 

El Salvador Passes Law Requiring Employment of Disabled Persons 

By Teresa Cubias, San Salvador El Diario de Hoy, 4 Dec, DisabilityWorld 6 (2001) 

. http://www.disabilityworld.org/01-02_01/employment/elsalvador.htm

 

El Salvador has passed a law that will require businesses by May to employ one disabled 
person for every 25 workers. 

 

El Salvador Presents Legislation to Improve Urban Accessibility in the Municipalities 

By Yolani Romero, Solidaridad Digital, DisabilityWorld 19 (2003) 

. http://www.disabilityworld.org/06-08_03/gov/elsalvador.shtml

 

The National Family Secretariat (Secretar�a Nacional de la Familia, SNF) of El Salvador, 
headed by the First Lady, Lourdes de Flores, presented an accessibility project for urban 
areas which, if approved by the legislature, it will benefit thousands of persons with 
disabilities living in this Central American country. The International Cooperation of 
Germany (Agencia de Cooperaci�n Alemana, GTZ), estimates that before the year 2001, 
the year on which the Law of Equal Opportunities of El Salvador entered into force, there 
were about 800,000 persons with disabilities, that is, 10% of the population of the 
country. The new Technical Norms for Urban Accessibility, Architecture, Transportation, 
and Communications (Normativa T�cnica de Accesibilidad Urban�stica, Arquitect�nica, 
Transporte y Comunicaciones), contains dispositions to facilitate accessibility in public 
transportation vehicles, moving around commerce centers, parks, buildings and 
sidewalks. 

 

The National Family Secretariat of El Salvador presents Technical Norms for Urban 
Accessibility, Architecture, Transportation, and Communications 

DisabilityWorld 21 (2003) 

. http://www.disabilityworld.org/11-12_03/gov/briefly.shtml

 

The National Family Secretariat of El Salvador recently presented the Technical Norms 
for Urban Accessibility, Architecture, Transportation, and Communications, an 
accessibility project for urban areas. The Technical Norms for Urban Accessibility, 
Architecture, Transportation, and Communications includes directives to improve access 
to public transportation, parks, buildings, pavements and communication, and if approved 
by the legislature, will benefit thousands of persons with disabilities living in El 


Salvador. To read the original report in the Disability Tribune, please visit 
http://www.daa.org.uk/e_tribune/e_2003_10_and_11.htm#8. 

 

 

GUATEMALA 

 

Guatemala: 2002 Census includes disability 

By Luis Fernando Astorga Gatjens, DisabilityWorld 16 (2002) 

. http://www.disabilityworld.org/11-12_02/gov/guatemala.shtml

 

Thanks to the strong efforts of the Guatemalan National Disability Council (Comisi�n de 
Censo del Consejo Nacional de Discapacidad, CONADI), a disability component was 
included as part of this national survey. The figures of the last National Population 
Census in 1994 indicated that 0.72% of the Guatemalan population presented some type 
of disability. That figure is far below the 10 to 15% estimated by the World Health 
Organization. 

 

Citizen Participation of Persons with Disabilities in Guatemala 

By Silvia Quan, DisabilityWorld 21 (2003) 

. http://www.disabilityworld.org/11-12_03/gov/guatemala.shtml

 

General elections were held in Guatemala on November 9. It is important for us to 
examine what has been the participation of persons with disabilities in the history of this 
country, how have they participated within the electoral process, and how will they 
participate in the future. Historically persons with disabilities have been excluded form 
civil, political, social, economic, and cultural participation in the nation. Persons with 
disabilities have been denied, within the family and the community, their rights to make 
decisions, even in public settings such as education, health, and work. When addressing 
the political participation of persons with disabilities, we first have to ensure that they are 
recognized as citizens, as persons, and with full civil and political rights. 

 

Interview: Silvia Quan, Disability Rights Advocate of Guatemala 

By Luis Fernando Astorga Gatjens, DisabilityWorld 21 (2003) 

. http://www.disabilityworld.org/11-12_03/gov/quan.shtml

 

Silvia Quan is a high profile woman and the current Advocate of Persons with 
Disabilities with the Guatemalan Office of the Procurator for Human Rights 
(Procuradur�a de Derechos Humanos). In an interview for DisabilityWorld, she told us: �I 
proudly identify myself as a woman with disabilities, first, then as a person with 
disabilities...a subject of rights and not an object of pity, of medical or psychological 
treatment. I am a woman who acquired disability at adult age, about 23 or 25 years ago. 
Because my visual deficiency began to advance progressively early in my adolescent 
years, I also acquired my identity as a person with a disability in a progressive manner. It 


was a slow process, with very hard moments together with my family and friends... I 
remember those time with satisfaction since I never lost my personal dignity.� 

 

The Penitentiary System and the Mental Health Hospital in Guatemala 

By Silvia Quan, DisabilityWorld 24 (2004) 

. http://www.disabilityworld.org/06-08_04/gov/guatemalamentalhealth.shtml

 

The majority of the people living in our conservative societies, associate the situation of 
persons with disabilities with hospitals, especial education schools, asylums and other 
forms of medical and social forms of segregation, so common in poor countries. 
Therefore, is it frequent that they do not think about persons confined due to the 
commission of some criminal act and who, pursuant to a court order, were admitted in a 
medical center. As in many countries, in Guatemala when a person is sentenced to a term 
in prison because of a criminal action, if it is proven that she or he has a psychiatric 
impairment, the measure or ruling is to confine the person in a health facility, substituting 
for jail. The ideal would be to provide these health services within the penitentiary and 
that, in every case, the service would be, duly and safely, provided only to those who 
need it. The problem is that such service does not exist in the jails of this Central 
American country. So, the inmates are declared �mentally sick� and taken to the Special 
Ward of the National Mental Health Hospital. 

 

First Disability Survey in Guatemala 

By Silvia Quan, DisabilityWorld 24 (2004) 

. http://www.disabilityworld.org/06-08_04/gov/guatemalasurvey.shtml

 

The efforts to quantify and characterize persons with disabilities have been minimum in 
Guatemala; this has translated into an under estimation of the number and the severity of 
the conditions, that persons with disabilities have confronted and still have to confront. 
Though some questions regarding persons with disabilities have been included on the last 
three National Censuses, the information obtained is insufficient, very variable, and 
conflicting with respect to data from the World Health Organization. 

 

 

MEXICO 

 

Mexico Makes Special Education Mandatory & Recognizes Sign Language 

By Nathalie Dom�nguez, DISNNET Press, DisabilityWorld 19 (2003) 

. http://www.disabilityworld.org/06-08_03/gov/mexico.shtml

 

Mexico has recently approved a new law which specifically addresses the rights of 
persons with disabilities in areas of health, rehabilitation, employment, training, 
education, technical aids, accessibility, transportation, telecommunications, housing, 
social and legal assistance, arts and culture. From now on special education is mandatory 


for persons with disability whose conditions indicate that they cannot benefit from 
regular education. The new law recognizes Sign Language as an official language in the 
nation. This will promote training courses so deaf persons will have interpreters at 
institutions where public services are provided and major improvements will be made to 
the National Sub System of Bilingual Education for deaf persons. 

 

Mexican government establishes regulations for federal buildings accessibility 

DisabilityWorld 22 (2004) 

. http://www.disabilityworld.org/01-03_04/access/briefly.shtml

 

In January 2004, the Presidential Off ice for the Promotion and Integration of Disabled 
Persons announced that the Mexican government passed a resolution establishing 
regulations for accessibility to federal buildings. 

 

 

PANAMA 

 

Government of Panama Expands Opportunities for Persons with Disabilities to Obtain 
Employment 

By Luis Fernando Astorga Gatjens with Edith Castillo Duarte, DisabilityWorld 18 (2003) 

. http://www.disabilityworld.org/04-05_03/employment/panama.shtml

 

In December 2002, President of Panama Mireya Mocoso signed Executive Decree No. 88 
modifying Law No. 42, to strengthen the foundations of equal opportunities for persons 
with disabilities, particularly in the area of access to work. The Law outlines a series of 
initiatives directed to provide equal opportunities for persons with disabilities in the 
country. Alba Tejada de Rolla, Minister of Labor of Panama, has recognized in many 
occasions that the even though the Law No.42 was approved, persons with disabilities 
still confront discrimination in diverse spheres of society including access to work. 

 

 

PERU 

 

Rights for People with Disabilities in Peru 

DisabilityWorld 1 (2000) 

. http://www.disabilityworld.org/March2000/English/PeruVotingRIGHTSProject.htm

 

During the last decade the Government in Peru has experienced some positive changes: 
most importantly the rebuilding of the economy that has allowed Peru to return into the 
international financial market and peace within the country. As Peru approaches the new 
Presidential term, which starts in July 2000 and because of the above mentioned 
advocacy of our organization, APRODDIS is preparing a project that would include 
people with disabilities to be an important part of the political agenda for the next 


President. As the voting process begins in April 2000, APRODDIS is preparing a 
political agenda which would offer disabled people the opportunity to be better informed 
about the political process and the importance of voting. 

 

CONADIS Peru 

DisabilityWorld 2 (2000) 

. http://www.disabilityworld.org/April-May2000/Governance/CONADISPeru.htm

 

Act 27050, published on January 6, 1999, brings into force the General Law for People 
with Disabilities, a legal instrument that covers, brings up to date, and gives coherence to 
all preceding legal documents pertaining to the issue. To oversee compliance with the law 
and that it be carried out efficiently, an autonomous office was created to plan and 
execute all government actions towards promoting the improvement of life within the 
target population. This office, called CONADIS Consejo Nacional de Integraci�n de la 
persona con discapacidad (National Council for Integration of People with Disabilities), 
will lead efforts from the presidency of the republic. 

 

Disabled Peruvians Protest, Celebrate 

DisabilityWorld 7 (2001) 

. http://www.disabilityworld.org/03-04_01/gov/peru.shtml

 

A public protest was organized in Lima in the summer of 2000 by the National 
Confederation of the Disabled of Peru (CONFENADIP). The protest was staged in order 
to celebrate the 19th anniversary of a historic event of singular importance: the march of 
thousands of people with disabilities to the Congress of the Republic to demand the 
creation of new disability laws, as called for by the Constitution. This time, the march 
was aimed at the dismissal due to incompetence of the principal workers of CONADIS, 
highest state authority on this issue, as well as the return of CEFODI (Center for 
Occupational Training for Disabled People) to management by CONFENADIP. 

 

Disabled Peruvians �Stand-in� to Protest Presidential Inaction 

By Kay Schriner, DisabilityWorld 13 (2002) 

. http://www.disabilityworld.org/04-05_02/gov/peru.shtml

 

Members of Peru's Confederacion Nacional de Discapacitados del Peru (CONFENADIP) 
have been on a �stand in� in front of the Government Palace since April 22. And three 
individuals with disabilities began a hunger strike on April 24. CONFENADIP is 
unhappy with Peru's new president, Dr. Alejandro Toledo, whom they say has broken 
promises made to Peru's disabled citizens. Among these is President Toledo's pledge to 
hire three persons with disabilities to be a part of his government. 

 

Peru promotes Human Rights in Mental Health and Disability 

By Luis Fernando Astorga Gatjens, DisabilityWorld 16 (2002) 


. http://www.disabilityworld.org/11-12_02/gov/peru.shtml

 

Last October 23 the Peruvian University Cayetano de Heredia (Universidad Cayetano 
Heredia del Per�) conducted an International Seminar: �Promoting Human Rights in 
Mental Health and Disability (Promoviendo los Derechos Humanos en Salud Mental y 
Discapacidad). This activity was part of the activities organized during the visit of a 
mission of Mental Rights Disability International, MDRI (Organizaci�n Internacional 
sobre los Derecho en Discapacidad Mental), which came to Per� to promote the 
compliance of human rights for persons with mental disabilities. 

 

Per�: An example not to be followed 

By Julio Wilfredo Guzm�n Jara, DisabilityWorld 20 (2003) 

. http://www.disabilityworld.org/09-10_03/gov/peru.shtml

 

The Peruvian State signed the Inter-American Convention on the Elimination of All 
Forms of Discrimination Against Persons with Disabilities; it ratified this Convention by 
Legislative Decree No. 27484 of June 7, 2001. Also, Peru, by Legislative Decree No. 
24509 (1986) ratified the Covenant 159 and the Covenant 168 of the International Labor 
Organization regarding persons with disabilities. Peru, thanks to the permanent pressure 
from disability groups, has committed itself, ethically and morally, by signing 
international instruments and national legislation. We can say, therefore, that since 1970 
ours is one of the most advanced countries in the planet, but there is a gap, from the 
official words to the government actions. 

 

Peru: Human Rights Report Sparks Interest in Mental Health Reform 

By Alison A. Hillman, DisabilityWorld 25 (2004) 

. http://www.disabilityworld.org/09-11_04/gov/peru.shtml

 

Mental Disability Rights International (MDRI) and the Association for Human Rights 
(APRODEH) released a two year study entitled Human Rights & Mental Health in Peru 
in Lima on September 13, 2004. The report, which details widespread abuses and 
discrimination against people with mental disabilities�including people with psychiatric 
and intellectual disabilities�in Peru, has garnered support from many sectors of Peruvian 
society for broad-based reform of mental health and social services. Peru's Minister of 
Health, Pilar Mazzetti, attended the presentation of the report, and offered support for the 
report's recommendations, noting that a transition to community-based mental health 
services was necessary. 

 

 

 


* This article originally appeared in DisabilityWorld 8 (2001), 
http://www.disabilityworld.org/07-08_01/il/kabbara.shtml 

 
Disability Groups in Arab Countries Promote Peace: 
an interview with Dr. Nawaf Kabbara of Lebanon, 
President of Arab Organization of Disabled People *

 

By Laura Hershey, conducted in June 2001 

 

 

 

 

 

 

 

Q: Dr. Kabbara, can you tell me about your organization, the Arab Organization of 
Disabled People? 

 

A: The Arab Organization of Disabled People is a coalition of organizations of disabled 
people in the Arab world. It was founded in 1998 in Egypt, and includes 14 other 
countries. And the objective is to provide representation of disabled people in the Arab 
world. 

 

Q: And does the organization include all types of disabilities? 

 

A: It does. Every country should be represented by at least four different disabilities. 

 

Q: You are from Lebanon. Is there a strong chapter of this organization there? And a 
strong disability rights movement? 

 

DISABILITY RIGHTS MOVEMENT 

 

A: The disability rights movement in Lebanon is organized under the Lebanese Council 
of Disabled People, which is a member of DPI [Disabled People's International]. LCDP is 
very active, and it was very successful in passing a very important law on the 29th of 
May 2000, last year. 

 


One of the main reasons why Lebanon is so strong is because of the war. You know, 
Lebanon was faced with civil war from 1975 to 1990. As a result of this, lots of people 
became disabled, and they built up a movement that succeeded last year to pass a very 
progressive law concerning disabled people. 

 

NEW LAW ADOPTED 

 

Q: And what does the law do? 

 

A: The law is comprehensive. It includes full accessibility in education, jobs, health 
services, transportation, tax relief things, a lot of good things. 

 

Q: And do you think that law is already beginning to impact the lives of disabled people 
in Lebanon? 

 

A: Let me put it this way. For the first time, the physically handicapped can have a car 
now. Another thing that, is that we've started to have 100 percent health coverage. So 
things are moving slowly, but steadily. 

 

Q: Are people with disabilities in Lebanon likely to be employed? What kind of job 
opportunities are there? 

 

EMPLOYMENT 

 

A: Before the law, we used to lobby to get jobs and, no way. Now, the Social Security is 
not giving clearance to any company that has more than 60 employees, that have not 
employed three percent disabled people. For the first time, we are [being] contacted by 
companies, asking us to present disabled people to them. So things are moving in the 
right direction. 

 

Q: Are many more disabled people are now being hired because of this? 

 

A: I would say now there will be more opportunities. Not yet hires�but more 
opportunities are opening now. 

 

Q: What are some of the biggest issues that face people with disabilities in Lebanon, 
and in the Arab world in general? 

 

UNIVERSAL SEARCH FOR A PLACE IN SOCIETY 

 

A: What we face is what the disabled world faces all over. First of all, recognition�that 
we are there, that we have an identity, a place in society. Second, that this recognition 


should be translated into laws and programs of action. Three, acceptance in a society of 
pluralism, of difference. 

 

Q: Can you tell me about the leadership in your organization of disabled people? Is it 
mostly people who were injured during the wars? And is it mostly men? How would 
you describe the leadership? Is it diverse? 

 

A: In Lebanon, it's very diverse. No doubt the war was the factor in terms of initiating the 
movement; [but] we have everyone included, not only the veterans of the war. In the 
Arab world, you find a good diversity. For example, I was in Sudan in February, and I 
was astonished by the spirit of the disability movement over there. The most important 
organizational work is to create some sort of spirit, of momentum, for people to recognize 
that their marginalization is not natural, that they have a political position to take. I think 
we are doing this. 

 

Q: How does your organization recruit members? How do you find the disabled people, 
especially those who are very marginalized and maybe isolated? 

 

A: Our organization is a coalition, so we work with national assemblies. Through our 
contact with the national assemblies, we have an idea of what's happening inside their 
countries. You have [some] prominent leaders with disabilities, who came from good 
families. They're rich, or well educated. This has given them a position to be on the front. 
There has to be some sort of leadership at the beginning. 

 

When we started to advocate, we were very much aware of marginalization, and 
disability in poor, rural areas. 

 

WAR AND DISABILITY 

 

Q: What about countries in the Arab world that are still very much involved in wars? 
For example, is there active involvement from Palestinians with disabilities? How do 
those conditions impact their lives? 

 

A: I think that's a very important question. Unfortunately the Arab world sees lots of 
violence. You have Palestine, you have Iraq, you have Sudan, you have Algeria now, not 
to mention other places. And there are around 2,500 new disabled persons in Palestine 
alone, since eight months ago�which is a huge number. The Arab Organization of 
Disabled launched an international appeal to support the disability movement of 
Palestine, because they are living in a very, very difficult situation. It's a combination of 
three kinds of discrimination: from society; from the occupation; and from the world, 
because they are not thinking of them, or of how much they are suffering in these 
conditions. I think one of the most important factors in the Arab world is increasing 
disability because of violence. 


 

CULTURAL ASSUMPTIONS 

 

Q: I'd like to ask you about the cultural aspects of the Arab world in terms of disabled 
people. In the United States, for example, in order to get people with disabilities full 
rights, we have to change some of our cultural assumptions about independence and 
competitiveness and things like that. Is the disability rights movement in the Arab 
world challenging cultural assumptions as well? 

 

A: I think there are two kinds of cultural positions that you have to deal with. One is the 
discourse; the second is the practice. The Arab world is mostly Muslims. Fortunately the 
Koran is very positive toward disabled people. In the Koran there was a blind person who 
went to his Prophet asking him a question. Every time this guy went to the Prophet, the 
Prophet never answered him. And so God talked to the Prophet and said, �Why are you 
doing this to this guy? You're not allowed to do this. This is bad.� Of course, the Koran 
says much more important things. So this is creating a very important position in favor of 
disabled people, as far as Islam is concerned. 

 

In practice, people discriminate easily. People have their vision of what is good for the 
society�it's the perfect person. Of course now we are challenging this, and slowly, 
slowly this is changing. 

 

PERSONAL EXPERIENCE 

 

Q: Could you tell me a little bit about yourself? Your background, and how you 
became involved in the Arab Organization of Disabled People, and also in Disabled 
People's International? 

 

A: I had a bad car accident in 1980, which made me paralyzed. After this I studied in the 
United States and then in England. This is where I started to encounter the philosophy of 
integration. 

 

DISABILITY & PEACE MOVEMENT 

 

In 1987, we initiated a peace movement by disabled people in Lebanon. For the first time 
ever, disabled people marched from north to south against the war. This march was on 
the BBC, it was on ABC. (At that time there was no CNN.) When we were preparing to 
march, they told me about DPI. So I went to Sweden, [where] there was a meeting of the 
World Council [of DPI]. I got their support, and became part of them. 

 

Q: How many people marched in that peace march? 

 


A: The march started [with] 100 persons. When we reached the south, there were 
thousands and thousands of people�not only disabled; all people. The disabled people 
were the vanguard of the disabled rights movement against the war. 

 

The strong message was two-fold. One, that the people who are the living martyrs of the 
war are coming out to say, �No.� Second, that disabled people are not passive. They are 
very active, and they can be politically very important in the decision-making. After this, 
we thought that [disabled people in] Lebanon, as part of the Arab world, should find a 
regional umbrella. And that's why we created the Arab Organization in 1998. 

 

Q: What was the impact of the peace march? 

 

A: In Lebanon, the government and society started to deal with disability as an issue. We 
started to be considered a factor in civil society. In the world, we became an example for 
the disability movement. Many disability groups have told us they've been inspired by the 
march. In 1993, we organized a march by nine countries against the war in former 
Yugoslavia. So there was a momentum of peace. 

 

Presently, the peace movements are not on the forefront these days. But I think disabled 
people should be like the ambassadors of peace and human rights in the world. 

 

IMPACT OF GLOBALIZATION 

 

Q: Can I ask you about the impact of globalization? We hear a lot nowadays about 
economic globalization, and the impact on developing countries of structural 
adjustment policies and IMF loans. Do you see this process having a significant impact 
on people with disabilities in the Arab world? 

 

A: Globalization was very positive toward the disability movement. Through 
globalization we are able to promote the concept of human rights and independent living 
for people with disabilities. It is through the globalization that we have international 
movements�DPI, World Union of the Blind, of the Deaf. Through globalization we are 
able to lobby and talk with each other. Through globalization we can sit and talk and use 
the same language. 

 

However, globalization is not only this. You have the World Trade Organization, for 
example. You have the IMF, you have the World Bank. You have many other aspects 
that affect our life one way or another. I think the disability movement could not stay as if 
it has nothing to do with what is happening in the new global forum. I think we have to 
intervene. We have to make sure that the new global forum won't put us aside. 

 

Q: How do those economic aspects of globalization particularly affect people with 
disabilities? 


 

A: We'll be the first people to be hit in case of unemployment or recession. So we have to 
lobby to make sure that in any decision, we are being considered as a group that's going 
to be suffering [from] such decisions. 

 

Q: Do you think people with disabilities will be consulted? 

 

A: Let me put it this way. We should not expect them to consult us. We should push 
ourselves in there. 

 

Q: Is your organization pushing for that? 

 

A: In the Arab world, yes. I would advise DPI and other organizations to do the same. 

 


 Selected Articles and Reports 
Published in DisabilityWorld 2000�2005: 
MIDDLE EAST 

 

The following lists selected news articles and reports from the Middle East, 
published in DisabilityWorld (www.disabilityworld.org) 2000�2005, 
documenting the rise of activities pertaining to 
disability and good governance in that region. 

 

 

 

LEBANON 

 

Lebanon Considers Plan to Ensure Rights 

DisabilityWorld 1 (2000) 

. http://www.disabilityworld.org/March2000/English/Briefly1legis.htm

 

During a four day regional workshop and International Seminar on Environmental 
Accessibility in December in Lebanon, Aref Daou of the Social Affairs Ministry said the 
ministry was working on a national plan to ensure the rights of disabled persons. The 
meetings, sponsored by the U.N. Economic and Social Commission for Western Asia, 
brought together about 1000 policymakers, researchers and activists from throughout the 
Middle East. 

 

Lebanese Parliament Adopts Comprehensive Legislation Concerning Disabled Persons 

DisabilityWorld 7 (2001) 
. http://www.disabilityworld.org/03-04_01/gov/lebanon.shtml

 

The Directory Law concerning People with Disabilities was adopted on May 9, 2000 by 
the Parliament of Lebanon during its general session. The following summary of its 
contents and commentary on its implementation is based on English translations that 
appeared in the June 2000 issue of the newsletter of the Arab Organization of Disabled 
People and the February 2001 issue of Echoes of the Disabled, published by the National 
Association for the Rights of Disabled People in Lebanon. The legislation is comprised of 
102 articles organized in 10 sections and addresses the following topics: definition of 
disabled and a classification of types of disability, including qualifications for a disability 
identification card; information related to the establishment of a national council on 
disability affairs, to be chaired by the Ministry of Social Affairs, to have representation 


from other ministries, associations of disabled people, disability-related institutions, and 
representatives directly elected by disabled persons; detailed explanations of rights to 
receive health, rehabilitation and support services, paid for by the government and now to 
be promoted through an awareness campaign; description of the right to an accessible 
environment (influenced by the U.N. Standard Rules), including transportation and 
housing, specifying that 5% of housing owned by the government to be made accessible 
and available to disabled persons; the right to an equal opportunity to a good education in 
all schools, in regular classes and in special ones, if needed; encouragement to 
establishment of sports teams of disabled persons and provision of sports trainers and 
sports doctors; and, finally, the right to disabled people to equal work opportunities and 
social benefits. This last section declares that a compensation equal t the amount of 75% 
of the minimum wage will be paid to unemployed disabled persons and specifies that 3% 
of public sector jobs be reserved for disabled persons. Concerning the private sector, the 
law states that companies providing 30�60 jobs should each hire at least one disabled 
person. 

 

 

 


 Linking Employment & Health Care in the 
U.S. Social Security Administration: 
an interview with Susan Daniels, former Deputy 
Commissioner, U.S. Social Security Administration 

 

By Ilene Zeitzer 

conducted April 29, 2004 in Washington, D.C. 

 

 

 

 

 

 

 

BACKGROUND 

 

Q. The first question is to get some background in terms of your various appointments 
when you were with the government. How those were achieved, were you appointed, 
did you get moved through the career system? 

 

A. When Bill Clinton was elected I was working as a Career Executive in the Department 
of Health and Human Services (HHS), and I was very excited when he was elected. I had 
been working for four years as a Career Executive since 1988. I worked in the 
Rehabilitation Services Administration (RSA) and in the Administration on 
Developmental Disabilities (ADD). However, I recognized as soon as Clinton was 
elected that all these people were going to be leaving. And I thought it would be nice to 
get out of the line of fire. 

 

So, I volunteered to go work on the Healthcare Taskforce on Long-Term Care. I did that 
right after the inauguration, for about three months. It was wonderful for me because I 
was doing staff work. Prior to that, I had been doing almost nothing but administrative 
work since I entered the government�personnel, budget, all that kind of stuff. I did some 
program work, but mostly it was administrative. So, I was really delighted to just get into 
content. I didn�t have to run anything, I just had to do content on long-term care, 
community-based long-term care�how would it be funded, etc. I talked to a lot of people 
with disabilities and I wrote and conferred with a lot of people. 

 


HOW THE APPOINTMENT TO SOCIAL SECURITY ASSOCIATE COMMISSIONER FOR 
DISABILITY HAPPENED 

 

Anyway, during that same time somebody said to me, �You know, Social Security is 
looking to fill the position in the Office of Disability.� I said, I didn�t know anything 
about the Social Security Administration (SSA). I mean, I knew about some of the 
programs but I didn�t even know it was in Baltimore. 

 

I was still working at the White House and I had opportunities to meet the President and 
to brief some of the people in Health and Human Services (HHS) in long-term care. I got 
to be in on these briefings and meetings and started making lots of contacts. Then all of a 
sudden, the person who was offered the position at SSA didn�t take it. He called me the 
night that he told them �no� because he felt he couldn�t survive in the East Coast 
weather, but that he thought I should put my hat in the ring. I said, �What do I know 
about Social Security?� He said, �All the important things already. You know how state 
government works, you know how federal government works, you know all about 
employment, you know all about funding for long-term care, you understand entitlement 
programs. You know everything you need to know, only you don�t know the specifics, 
but you don�t need to know the specifics because that�s not what you�re going to be 
doing.� Then someone advised me that I really needed political credentials. So after 
getting letters of support for me in that job, I had an interview with the Social Security 
Commissioner a week later. And, because I was already in HHS, they could detail me 
right away. 

 

Q. So this was before SSA separated from HHS? 

 

A. That�s right. So what they did is basically, one day I was at ADD on paper, so I was 
mostly working out of the office of the Assistant Secretary for Planning and Evaluation 
(ASPE) and the White House, and the next day I showed up at Social Security. That was 
pretty much the way it went: they just detailed me to that job until all the papers went 
through the White House and all the vetting happened. So I was on the job in April, and 
by October 1 all the papers were finished. 

 

Q. So you actually changed status from career [staff] to political [appointees that 
change with every administration]? 

 

A. Yes. I resigned, only four months after I had been at Social Security, I resigned my 
career status. 

 

Q. Did that worry you�to give up the career status? 

 

A. A lot of people said, �Don�t do that. That�s not smart.� 

 


Q. Could they not have kept you as career? 

 

A. They probably could have kept me career, but I didn�t want to be career. I wanted to 
be free to walk the political line, to be involved in political discussions and I didn�t think 
it was good for the career service to have that all muddied up. I just didn�t think it was the 
right thing. I wanted to be involved in policy decisions, and I wanted to be involved in 
the political process that moves policy along, because I�d seen it work at HHS. I didn�t 
like some of the things I saw. I thought I could do a better job. 

 

Q. You saw what work, the political aspect or the career aspect? 

 

A. The political aspect. 

 

CHALLENGE FOR POLITICAL APPOINTEES 

 

Q. Do you think that it�s hard for each group of new political appointees to come in 
and try to change the atmosphere? 

 

A. Oh yeah, I think it�s very hard. I think the transitions in government are very difficult, 
very difficult. They shouldn�t happen too often, I mean I wish we had a six or eight year 
term, in the future sense. But I don�t think it was terrible. I think I had an advantage 
coming in as a person who knew what a deputy was supposed to do, and how a deputy 
was supposed to behave and what the work of the staff was. I really understood all of 
that. It surprised everyone that I knew anything about how government works. I mean it 
was a shock to them, and I kind of had fun with it. I knew all about the personnel system, 
all about budgeting systems, I knew all of that. They were stunned that I wasn�t just some 
kind of little airhead. 

 

Q. �They� being the people who were your peers at the level of your appointment, or 
are you talking about the underlings? 

 

A. Subordinates. 

 

IMPACT OF DISABILITY: LOW EXPECTATIONS OF COWORKERS 

 

Q. Talk a little bit about the impact that you think you had as a person with a disability 
on the atmosphere, and the thinking, and the acceptance�. 

 

A. I think everyone was enormously uncomfortable with my disability, enormously. Not 
only my subordinates, but my superiors and my colleagues, my parallel people, they were 
all pretty uncomfortable with the whole thing. I don�t think there were many people other 
than you and a few others that really knew what to do with this whole thing. And that�s 


the reason I went quickly in search of people I knew and with whom I was comfortable. I 
think, at first, they assumed all kinds of things because of the disability that weren�t true. 

 

Q. Such as? 

 

A. Such as I didn�t have any idea about how the government was run or that�. 

 

Q. In other words, it seemed that they thought that you were appointed simply because 
you were a person with a disability, as a sort of token? 

 

A. Right, right. They didn�t seem to expect me to have any knowledge at all about 
disability issues, even though everybody could see on my resume that I had taught at a 
university for 15 years in the area of disability. I mean, it was just surprising to them that 
I knew anything. By the time I actually got to Social Security, I had read everything, plus 
I read a lot of GAO (General Accounting Office) reports and things like that. So, by the 
time I got there, I was very conversant even with the acronyms. 

 

So I really studied for the job before I went in and I think they really underestimated 
me�which was kind of fun. They would tell me, �Oh, you don�t really need to know 
about that.� And I would say, �Oh well, I already know about that.� I think the other 
thing is, they didn�t know how to address my disability, or if they should address it at all. 
Whether they should be quiet about it and not say anything, or say something or 
whatever. I mean, everyone was very nice, I�m not saying they were unkind, they were 
very kind. But I started out by telling them, �Don�t worry about disability-related stuff. 
I�ll tell you when I want you to do something, and when I don�t want you to do it, I�ll tell 
you and no hard feelings.� [Susan Daniels uses a power scooter for mobility.] Mostly, 
with my immediate subordinates, that works just fine. But I think the disability threw 
them off a lot. That wasn�t true just of my subordinates; it was also true of my superiors. I 
think that was one thing that had a real impact. 

 

ACCEPTANCE BY DISABILITY GROUPS 

 

The other was that I easily walked among disability groups, that is, I could go out and be 
accepted at a rally or disability meeting as myself, so I brought acceptance to Social 
Security. There was someone on staff who had been doing a lot of disability outreach, but 
he wasn�t a person with a disability, so he couldn�t bridge that gap. I did a lot of that 
bridging. I took a lot of different people to different meetings in the disability 
community, just so they would have an opportunity to meet these people, get to know 
them, talk with them. So I think the other thing we did is we brought disability 
constituency groups into focus to Social Security where they weren�t before. I think I also 
brought an understanding of the difference between how Social Security defines a 
problem and how constituents define it. I figured that out because of my experience with 
the disability constituency and having a disability myself�however, much less the latter. 


I think it was much more important that I had known and been involved with disabled 
people, than that I had a disability myself, because what I used in my job was my 
knowledge of how the constituency thinks, not how I think. 

 

NOT THE FIRST ASSOCIATE COMMISSIONER WITH A DISABILITY 

 

Q. One thing I�m a little surprised at is that you were not the first disabled person in 
that job, there had been a previous Associate Commissioner. So, I�m a little surprised 
that they reacted to you the way they did since they had already had someone who was 
a wheelchair user in that job. 

 

A. But it had been a long time. 

 

Q. It had been probably eight to ten years. But it wasn�t the first time they had ever 
encountered somebody with a disability in that position, although it sounds like they 
acted like they had never encountered it before. 

 

A. Well, I think a lot of people had never encountered the situation because it had been a 
long time and, I don�t think they had ever encountered a person who was politically 
active with the disability constituency and other disabled people. And that was true. I 
mean, I was political active�I did the 504 sit-in [successful protest in 1977 to obtain 
federal regulations for section 504 of the Rehabilitation Act], so I was comfortable with 
the disability constituency. I had purchase with the advocacy community already when I 
came into the job, and I used that purchase a lot in the job itself, which is not something 
most Social Security people did. 

 

REASONABLE ACCOMMODATIONS ON THE JOB 

 

Q. Can you discuss the issues you ran into with SSA concerning your requests for 
accommodations, for example the resistance to providing you with a driver, and the 
questions they had concerning your need for an attendant? 

 

A. Well, I think at Social Security they had fashioned in their minds that they knew a lot 
about accommodating disabled employees. I think they had a self-image that they knew 
how to do this and they had done a fabulous job. So, when I walked in and made 
demands that were not on their approved list of reasonable accommodations, it threw 
them for a loop. That was number one. Secondly, I was a political appointee, not a career 
executive, and that made it even harder for them, because the top level political 
appointees didn�t want any of the political people to be perceived as taking advantage of 
their jobs to get more perks than other people did. So, I think that they thought that they 
were doing a good job of accommodating people with disabilities. In fact, they were 
doing a pretty good job if employees just needed standard stuff because of deafness, or 
blindness�they had either the interpreters or the computer program that accommodated 


pretty well. But when someone asked them to do anything that wasn�t on their list, they 
kind of collapsed. And it was made more difficult by the fact that my superior didn�t 
want me to advocate for myself because she didn�t want it to appear as taking political 
privilege. I found that very difficult because I was in no position at that time to criticize 
that or to do anything about it; I just had to work my way around it. 

 

Q. When you did your interview prior to accepting or being offered the job, was there 
discussion about accommodation needs that you might have? Did the subject of your 
disability even come up in the discussion about the job? 

 

A. No, and I didn�t bring it up, because I had never failed to be accommodated at my 
other jobs, so it never occurred to me. And I knew what the law was, and actually trained 
some of the people on Section 503 [of the Rehabilitation Act]. So I knew what was 
possible, and it never occurred to me to ask a single thing about it. 

 

Q. In terms of the experience at Social Security, did you have the feeling that they 
didn�t know what the law was or that they were deliberately being shall we say 
�concerned� because you were a political [appointee]? 

 

A. It had much more to do with the concern that I was a political, much more to do with 
that, than it did with that they didn�t get it. 

 

TRANSPORTATION PROBLEMS CONTINUE 

 

Q. But how could this be perceived as taking political advantage, it seems like a no-
brainer? 

 

A. It was to me. I don�t know. I had trouble with this. I had trouble doing what my 
superior asked me to do because I didn�t believe it was a smart thing or necessary. But I 
did it anyway, because that�s what you sign on for. You know, you don�t get to make 
every decision, so with the decisions you can�t make, you agree unless they�re so odious 
to you morally and offensive that you have to say, �I can�t work with you.� I wasn�t 
willing to say that, except that I did tell the next Commissioner when he was about to 
take the job, that if they did not provide me transportation, I would resign. I told him, 
�Unless I am Deputy Commissioner and unless transportation is provided for me, I can 
tell you right now, you can start looking for someone else.� 

 

Q. And he had no problem with the logic? 

 

A. No, he had no problem, because no problem existed then. By that time, he had planned 
to make me Deputy Commissioner. I mean he told me. He said, �Of course, this job 
deserves that kind of recognition and the portfolio is enormous and it will be bigger under 


you� (the portfolio doubled when he came). He said, �Of course you should be Deputy 
Commissioner, absolutely.� 

 

Q. But it begs the question had you not been named Deputy what would have 
happened? 

 

A. I would have left. 

 

Q. But that doesn�t solve the problem for the next person who comes along who has a 
disability but is only at the Associate Commissioner level for which transportation is 
not provided. 

 

A. That�s right, it doesn�t. But in a sense, they were right. Getting to and from work was 
my job, that was the deal, they weren�t responsible for that. However, I would never have 
taken the job had I known I had to provide transportation to Baltimore. 

 

Q. But during your normal workday, it seems to me that the agency had an obligation 
to provide accessible transportation. 

 

A. They did have a technically accessible van. When I got there they had a handicapped 
van, but we used to call it the Vomit Express because the suspension in it was so bad that 
it was hard to keep from getting extreme motion sickness in it. It was an 18-passenger 
van and it had a back ramp, and that�s what they used anytime they had to take me 
anyplace. 

 

Q. But what about the one van they bought for you without consulting you? 

 

A. Well, they thought they understood. They thought they had all the knowledge they 
needed. They were not what I would call humble about their knowledge, and, in fact, 
most of them had the right attitude, most of them. They were trying to accommodate me, 
they were just kind of inept, not cruel, inept. 

 

INCREASING AWARENESS.EVERYDAY STRUGGLE 

 

Q. Talk a little bit about how you had to educate people who were not disabled about 
accommodation and what that means? 

 

A. I think I did everything I could to appear to them as capable as I could, in the way I 
dressed, in using the scooter, in everything I did. I never gave them reasons, I was very 
careful in who I asked to help me to do anything personal. I didn�t let other people be that 
familiar, I didn�t think it was right. I thought that as the boss I needed a certain sense of 
distance. And I think when you help a person, it breaks down some of that barrier, which 
in fact I don�t distinctly need, I think other people need it. It breaks down the barrier, like 


the first time you and I traveled together. After that, we were like buddies. It breaks down 
the discipline between the boss and the subordinate. Now, since I didn�t use that card a 
lot, almost never, with the people that I worked closely with at Social Security, it didn�t 
get to be a big problem. But I was very careful not to ask for help purely in recognition of 
my rank, it had almost nothing to do with my disability, it had much more to do with my 
rank and being a woman. 

 

Q. Do you think that there was a lack of understanding regarding the accommodations 
needed when you traveled because you appeared not to need help during the work day? 

 

A. I never discussed my personal abilities, physical abilities with anybody at work other 
than with my Executive Assistant. That�s why when I interviewed her, I said, �If you take 
this job I�m going to have to ask you to do things that I wouldn�t ask any other staff 
person to do, like help me dress and put on my coat, put on my hat, put on my gloves. I�m 
going to have to ask you to help me sometimes to hold something I�m eating, or feed me 
if we are in a car and I�m eating.� I said, �Those are things I would not ask any other staff 
member to do.� And she said, �I�m fine with that.� Her way of handling it was like, 
�Well, I�ve raised three kids of course I can do that.� And it was a good way to answer 
the question. 

 

But I never, ever discussed that with anybody and when people asked me about it, I tried 
as much as possible to give accurate but vague answers. In a sense, I wasn�t using my 
disability in my job. I was using my connection to the disability community in my job. I 
didn�t feel it was my job there to change anybody�s opinion about reasonable 
accommodations, as long as I could get mine, or to understand disability better. I never 
discussed it from a personal perspective, ever, except that in the first year that I was 
there, I used to say to people, �Now, why did Susan Daniels come to Social Security?� 
and I would tell them that I was on SSDI after my father died. That is about as much as I 
disclosed to anybody about anything personal at work. And that really was a conscious 
decision. 

 

SLOW PROGRESS 

 

Q. When you were on board for a year or two, did you feel by that time that your 
superiors and your peers and your subordinates got it? 

 

A. No, I never felt that they got it until the new Commissioner came, because he treated 
me in a certain way that got everybody else�s attention. The job that I got at that point 
was the job I came to Social Security to do, that�s what I expected to do. I already had my 
opinion when I came in as a political person that you take your shot at doing something 
big. You decide what it is you want to do, focus in on it and don�t let go. No matter what 
happens, stay the course, and delegate other things, but know where it is you�re putting 
your resources, especially your own personal resources�your time, your energy. That to 


me was on the issue of employment, and getting a sea change. Employment and the 
connection with health care. Now, you know, every now and then someone there would 
tell me, �That�s not your portfolio.� And I said, �That is the problem. Nobody thinks it is 
his portfolio. The [then] Health Care Financing Administration [HCFA] doesn�t think 
employment is their portfolio, and we don�t think health care is our portfolio, but they�re 
linked in the lives of real people.� So, that was a very hard battle to get anywhere on. 

 

EMPLOYMENT ISSUES TO THE FOREFRONT 

 

Q. Tell me about the internal battle to push employment to the forefront of the 
disability agenda in terms of making the agency see that it was not just about getting 
the right check to the right person at the right time, their old mantra, but getting them 
to focus on the fact that you couldn�t deal with this disability issue unless you dealt 
with the exit end? You know, the agency�s focus was always so much about deterring 
entry on to the disability rolls, not about how to get off benefits or better still, 
preventing people from entering by helping keep them in their jobs. 

 

A. By the time I was in my second year, I had refined my strategy and it was going to be 
my glory or my death, because I wasn�t going to give it up. My strategy was, I cannot be 
the problem, I have to be the solution. I never told anybody at Social Security they were 
going about things wrong, what I did was make Social Security hear it from other people. 
I amplified the voices of disability constituents, and that was always my intent. The 
problem was going to be brought to the court by serfs who were experiencing the 
problem. So I never said all this stuff about health care, I never said, �I believe� this or 
that. Instead, I said, �Our constituents say that they won�t work if they risk losing health 
care.� Always, I either reflected them or I gave them opportunities to say their opinions 
publicly. I provided an enormous number of opportunities for people with disabilities to 
have their say. I spent millions of dollars on forums and all kinds of things to amplify 
their voice so it could be heard, not mine. Now, it was always my belief that if you get on 
the inside and you become the voice of the problem, then in their eyes you are the 
problem, people keep you out. 

 

I became part of the solution. People were saying, �So what should we do?� and �How 
should this be structured?� Then I went to a lot of smart people. I�d already latched on to 
the National Academy of Social Insurance (NASI) that was in the process of writing their 
report and they had been doing their disability panel for almost a year before I started. I 
thought, �I can�t come up with any better ideas than these. These people are brilliant. 
Who can compare to them?� So we adopted basically what they had written. And then we 
paid them to go around the country and tell people how it is they came to those decisions 
and talk with the disability community about it. And that was the strategy. What is worth 
accomplishing, if I have only one bite at the apple? It was the linkage between 
employment and health care. 

 


WHAT WERE SOME OF YOUR SUCCESSES? 

 

Q. It must have been difficult to convince the top levels of people who were dealing 
with administrative problems, dealing with the field offices and so forth, that this was 
something worth devoting the agency�s time and revenues towards? 

 

A. But there�s another thing in Social Security; the field will do what the leaders ask 
them to do, if they ask for something reasonable and in a polite way. The Commissioner 
was on board with these things, and so was the Director of Field Operations. I never did a 
thing that she and I didn�t talk over. We were a team and at that time, when the things 
really started to move, we were at full speed. We really did work closely together. That�s 
how we got the change in the SGA [Substantial Gainful Activity]. That was a huge 
change in the agency, absolutely huge. Nobody now even recognizes that was probably 
the most important change we accomplished. [Note: SGA is a financial threshold that 
serves as a quasi test to determine if a disabled beneficiary is capable of work or not. If 
s/he earns over SGA, it is assumed that the impairment is not disabling enough to qualify 
for eligibility for Social Security Disability benefit purposes. Until the change engineered 
by Susan Daniels, the monetary amount was adjusted on an ad hoc basis for all but the 
blind. During some Administrations, those adjustments happened very rarely and the 
amounts bore no correlation with any other index or wages whereas the SGA for blind 
Social Security disability beneficiaries enjoyed constant updating. As a result of the 
changes that occurred under the Clinton Administration that took effect on January 1, 
2001, the SGA for non-blind disability beneficiaries is also automatically adjusted based 
on increases in the national wage index.] 

 

CREATING UPROAR, APPLYING POLITICAL SKILLS 

 

Q. I did notice, I remember saying to you, �How did you get that under the radar?� 

 

A. A notice for comment on the SGA was published in the Federal Register. I went 
around the other side and got that notice for comment posted in every disability location. 
I said, �We�ve got to get this out to the disability community, this is the chance we have 
to cross this line.� We got 3,500 responses; seven or eight is usual, and up to 200 on a 
real big regulation. We got 3,500. And I went around giving people labels that had Social 
Security�s address on it. I said, �If you�re a person with a disability and you don�t think 
this is right, let people know. Here�s the address.� I had big sheets with Social Security�s 
address on it. I said �Just put this on the back of a postcard, say it in one sentence. We 
had to have a cry from the community, right? We had to have an uproar for the 
Commissioner to be able to walk into the Office of Management and Budget (OMB) and 
say, �Look, I want you all to sign off on this regulation.� So we created one for him. We 
really were working together. He used my political skill, he wasn�t afraid of it. He loved 
it, because we could come up with these maneuvers that amplified the voice of the 
disability community. Everyone in the disability advocacy community knew the SGA 


was a joke, but why hadn�t they been heard? Because it wasn�t organized before in a way 
that it could be heard. 

 

Q. One of the 54 recommendations of the 1988 Disability Advisory Council (DAC) 
dealt with the fact that the whole DAC thought it was unfair that there was such a 
disparity between the SGA for the blind and that of other disabled people. One of their 
recommendations was to freeze the SGA for the blind and let everyone else catch up, 
and after that, ratchet all of them to changes in the cost of living, or some other index, 
but it didn�t pass. Since the Reagan Administration made the DAC consider the cost 
implications of all their recommendations, the idea was that the savings achieved by 
freezing the SGA for the blind would offset the costs of indexing SGA for everybody 
else. The DAC recommended it, but the Administration was afraid to do anything with 
it because they were afraid that the blind lobby would come down on them for freezing 
their SGA to let everybody else catch up. 

 

A. Well, timing is everything. In the last two years of the Clinton Administration, we had 
a budget surplus. You cannot make changes in government if you don�t have a surplus, 
because every change, if you don�t protect the losers, is killed. I mean, for example, if 
you pit blind people against another group, you lose. The Commissioner understood that, 
and knew when the time was to strike. We didn�t strike on SGA in the first year he was 
there because the surplus was just a little bit. But when the surplus got to be a nice sum, 
then he said, �Now�s the time to strike.� He was a real leader. I�d like to take the glory, 
but it wasn�t me. It was Bill Clinton who got the budget under control so that we could 
slip a 10 billion dollar regulation through, and OMB (Office of Management and Budget) 
signed off on it. 

 

OTHER OUTCOMES 

 

Q. Talk a bit about what you think the overall impact of your tenure, in terms of 
outcomes for people with disabilities� 

 

A. Well, I think the policy changes, of course, were the significant thing. Also the 
establishment of an office whose sole job is employment support programs and getting 
that elevated to an Associate Commissioner level. We worked very hard on what I call 
infrastructure creation in the last two years that I was there so that the Agency was left on 
solid footing. That office � the Office of Employment Support Programs�staff increased 
in those two years quite substantially so that it had the person power to do the work that 
was going to need to be done. So, shoring up the infrastructure was one of the most 
important things that we did and I already knew that was important because I had been a 
career federal employee. And those who leave the organization unwilling and unable to 
carry on the mission, what have you done for them? Nothing! 


 

THE TICKET 

 

Q. Can you talk a little bit more about the Ticket to Work, the vision and how it got 
played out? 

 

A. Well, it was a disappointment how it got played out. The Ticket was very problematic, 
politically, not so much at Social Security as it was with the other appointees. Even with 
all the other disability appointees lined up with me, theoretically, some other appointees 
didn�t understand why the Ticket wasn�t everything for everybody, and I couldn�t get 
them to understand it, though I tried mightily. So in meetings at OMB on the Ticket, what 
happened basically was this bizarre relationship with Vocational Rehabilitation (VR) and 
all that stuff that gotten written in about VR being a Ticket taker, and VR having to make 
agreements with Employment Networks [ENs]�all that business. But even the White 
House proposal had things in it I didn�t even like. Now, after it got to the Hill [Congress], 
of course, they did what they wanted to, and they did some very disappointing things. 
Backing it down to 40 percent maximum payment to ENs, that should never have 
happened. 

 

The President�s proposal had the Commissioner addressing the cost issues based on 
actuarial data. If the program was spending too much money and not recouping, in other 
words if people were going off the Ticket [dropping out of work again] after five years 
and going right back on benefits, then the payments to ENs could be adjusted down or up 
or whatever, but it had the Commissioner adjusting them. But as soon as the Congress set 
it at 40 percent, that was the beginning of the death knell of the Ticket, the Ticket is not 
doable with the current changes around it. It�s still a doable idea, but it�s not going to be 
successful because it�s been enormously weakened by these other difficulties. It pays too 
little, the relationship to VR is not clear, and it contaminates it. 

 

I�m disappointed about the Ticket. I�m delighted about Medicaid buy-in. I mean, the 
country is more than half way there in less than 10 years. I�m delighted with the benefit 
planning outreach assistance, it�s a great way to enroll thousands of people in the work of 
Social Security�it�s wonderful. I�m delighted with lots of things about it, and I think the 
most important thing it did was that it redefined the problem of employment for a whole 
class of people and got people to be unwilling to accept how badly we are doing in that. 
So, the issue�s been raised to a much higher volume. The Ticket�well, really, I�d love in 
the next two or three years to see it be fixed. I don�t think it�s going to be successful. It 
requires such a clever approach to managing it, that I just don�t think regular folks are 
going to be able to do it unless some of these problems I mentioned are resolved first. 

 

MAIN LEGACY TO SSA 

 

Q. What do you think is your legacy to the Social Security Administration? 


 

A. It would be the policy development legislatively and otherwise and the infrastructure 
development. The other thing was I think an awful lot of people at SSA really liked me 
and they got to watch a person with a disability do things unrelated to disability, and I 
think that was a good experience for them. So, I think some of the personal/professional 
relationships that I made there were good experiences for the people. And I think that 
almost all the executives that worked for me felt like they were appreciated and that they 
were respected, and I�m very proud of that. 

 

 


* This article originally appeared in DisabilityWorld 26 (2005), 
http://www.disabilityworld.org/12-02_05/gov/lexinterview.shtml 

 
�The Council Is a Working Model of Democracy:� 
an interview with Lex Frieden, 
current Chair and former Executive Director 
of U.S. National Council on Disability *

 

By Ilene Zeitzer, conducted on May 7, 2004 via telephone 

 

 

 

 

 

 

 

BACKGROUND 

 

The governance project looks at the effect of having people with disabilities in positions 
of government and what impact, if any, that has. Part of the project also looks at the 
various national bodies that effect disability policy, whether the entity consists of 
appointed members or whether it�s an umbrella organization or other structure. A lot of 
focus will be on your thoughts about NCD as Chair and having been involved before as 
NCD�s Executive Director and to look at the overall effect of NCD as a body. 

 

FACTORS AFFECTING EFFECTIVENESS OF POLICY BODIES 

 

Q. NCD is an appointed body where in some countries the main disability policy body 
is comprised of an umbrella group of disability NGOs who have various abilities to 
affect the policies of the country either in an advisory capacity or otherwise. What are 
your thoughts about the different ways that these bodies are constituted vis-�-vis their 
effectiveness? 

 

A. Well, first of all, the effectiveness can depend on a number of things, and I would start 
with authority. If the law of the land has sanctioned, designated, or authorized a body to 
either set policy or advise on policy, then there�s reason to believe that body is going to 
have some impact. I think the second consideration to make is the extent to which that 
body has clout. That may be a function of either its membership, its economic status, by 


that I mean, in membership�either because it has a whole lot of members or very 
influential members. By economic status, I mean either because it�s a very wealthy 
organization with money to spend on advertising, marketing, and lobbying or because it 
has a high status budget from the government. So I really think there are a number of 
factors that actually determine whether it�s going to be more or less effective. 

 

Q. And what do you think about NCD as a federal agency, albeit an independent one, 
but do you think that being a federal agency limits its scope and strengthen or do you 
think that NCD has more latitude to pursue its agenda? 

 

A. Well, first of all there are some nuances that readers need to be aware of about NCD. 
Originally NCD was an advisory body in the Department of Education that was by law 
supposed to advise the President. But because it was purely an advisory body and a part 
of the U.S. administration, that advice never seemed to go very far, despite the fact that 
the members were appointed by the President. 

 

HISTORY OF NCD 

 

Q. When was that? 

 

A. That was 1978, in the Rehabilitation Act, the Council was set up as the Presidential 
Appointees to advise the President and it was located administratively in the Department 
of Education. So in reality, it was not very effective and by 1983 when hearings to 
consider the reauthorization of that body were held, people in the disability community, 
including myself, argued that it should not be; that it was of no value, that it should be 
ended. At the same time, some of us were arguing that there should be a blue ribbon 
panel appointed by the President to advise him on a number of these disability issues. 
What Congress did was to take our recommendations for both and basically put them 
together and made the Council an independent agency so that it had the freedom outside 
the administration to give advice and publish this advice. Inside the administration, its 
advice could be filtered at any number of levels. So, you know, simply to describe it as an 
advisory body in the government, I think there�s whole lot of different shapes that form 
can take, and I think that people outside the U.S. may not realize that either. 

 

TERMS OF OFFICE OF COUNCIL MEMBERS 

 

Q. Can you talk a little bit about the patterns of the terms of office of the members; I 
mean originally when it was set up, were the terms longer, did they rotate? And what 
do you think has been the impact of the way that the board of NCD is constituted? 

 

A. Well, that�s very interesting. Because these are Presidential appointments, I mean the 
President frankly can fire somebody, and what happens when there�s an election and a 
new President comes, and that even happens when it�s the same party sometimes, the 


President�s office will say in a polite kind of way, �Gee whiz, you�ve done a nice job, but 
wouldn�t it be nice if we could have our own people there?� And sometimes when that 
doesn�t result in a polite resignation, the President�s office will say, �You�re fired.� And 
that�s happened with Council members on a couple of occasions. 

 

Q. Do they serve a fixed term? 

 

A. The term is, and always has been, three years, and they�re rotating terms and offset 
terms, so that not everybody changes at the same time. Originally, it was one-year, two-
year, three-year terms and they have stuck with that. In the case of our Council, which 
was basically put together in 2001, the former Council all went out at the same time and 
they started over with people having one-year, two-year, three-year terms, and the law 
says that you can be appointed to succeed yourself to one full term. So, if someone�s 
appointed to a two-year term, and then they get appointed to a three-year term, they can 
be appointed to another three-year term, and therefore serve eight years, and then the law 
says if you�re not replaced, you can serve until you�re replaced. So, I think, for example, 
my predecessor in the Chair, Marca Bristo served 10 years as a member of Council, 
simply through the nuance. 

 

Q. Is there something in the bylaws or guidelines or whatever that says the composition 
of the board, because I know it�s now predominately the majority party? Has that 
always been the case, and if so, is the sharing, if you will, between the ruling party and 
non-ruling party in statute somewhere? 

 

A. The law says that the Council members must be appointed to represent a variety of 
considerations. It mentions in the law, parents or family members, I think, of people with 
disabilities; it mentions professionals working in the disability field; it mentions 
principally people with disabilities. I mean, I don�t recall whether that�s actually in the 
law or in the regulation, or in some of the testimony that went on with the Council when 
it was established. I do know that in each case, the Presidential Personnel Office looks at 
that history and they actually have seemed to follow the pattern all the way through of 
trying to find a lot of diversity. So it�s not a written law that there should be people from 
diverse cultures on the Council, but each President has seemed to do that. The current 
Council has an Asian American, a Hispanic American, and so on. So, there�s a lot of 
diversity. Additionally, they look for diversity of geographic representation, and seldom 
are there more than two people from the same State on the Council at any given time and 
usually they�re scattered throughout the U.S. It�s not written that there should be male 
and female representation, but ordinarily there�s a good balance there. It�s not written 
what disabilities must be included, but generally there�s always at least one visually 
impaired person, one deaf person, and one or two people in wheelchairs. 

 

In the last 12 years are so, they�ve been very sensitive to include a person with mental 
retardation or a family member of a person with mental retardation and have devoted 


more emphasis in finding somebody who is knowledgeable about, and representative of, 
the mental health/mental illness constituency. But that�s generally up to the White House 
Personnel Office that makes recommendations to the President. The President reviews 
and selects from those recommendations, makes the appointment and then it�s sent over 
to the Senate. Now, that�s interesting too, because in order to have Senate confirmation, 
the credentials of the people who are appointed by the President have to meet a higher 
standard. In those situations, people get a very rigorous review from the security agency, 
in this case the FBI, and it�s a standard above that of strictly Presidential appointees that 
are not necessarily Senate confirmed. So, for example, the members of our President�s 
Committee for People with Intellectual Disabilities, are Presidential appointees but 
they�re not confirmed by the Senate. 

 

IMPLICATIONS OF THE BUDGET 

 

Q. In terms of NCD itself, what is the budget? 

 

A. Roughly $3 million. 

 

Q. At one point, there were other �sort of� independent agencies such as the 
President�s Committee on Employment of People with Disabilities, and they were also 
sort of acting as bully pulpits, in that case taking on the goal of promoting employment 
for people with disabilities. Now, it seems like it�s pretty much on NCD to carry the 
whole weight of pushing the disability agenda. Do you think that�s the case, and do you 
think that it�s putting too much on NCD and its rather small staff and rather small 
budget? 

 

A. Well, it is a relatively small agency to manage the breadth of issues that pertain to 
disability, and because of that we�re not able to comment on some very important issues, 
we have to focus on and pick a few at a time that we can concentrate on. I personally 
believe the President�s Committee on Employment of People with Disabilities was an 
effective body. I don�t know why it was dissolved but I will point out that when it was 
dissolved, the Congress set up another employment advisory council for some reason, 
and I don�t really understand, I haven�t tried to figure it out. But there is apparently a 
dormant Presidential Advisory Council on Employment? 

 

Q. There is? 

 

A. Absolutely. I believe that it�s the same statute that moved the disability employment 
program to the level of Assistant Secretary. 

 

Q. In the Department of Labor�s Office of Disability Employment Policy (ODEP)? 

 


A. Exactly. And at the same time ODEP was created I believe there was also created by 
the Congress this blue ribbon employment advisory committee, but whatever happened to 
it, I don�t know. 

 

RELATIONSHIP OF NCD TO U.S. DISABILITY MOVEMENT 

 

Q. Talk a little bit about how NCD operates, and particularly in relationship to the 
disability movement in the U.S., because I think you know that in some countries the 
equivalent to NCD would be the umbrella group for all the disability organizations. 
That�s not the situation with NCD, so how does it interact with the sort of formal 
disability NGO movement in the U.S.? And how does it operate in terms of deciding 
what its agenda is going to be and so forth? 

 

A. First of all, it�s important to recognize that NCD has no formal or legislative 
obligations to consult with the disability groups or the provider groups or anything. 
That�s not required; they don�t require us to do that. However, the NCD leadership has 
always been cognizant of the fact that we live in a democracy and in order to have an 
effective democracy you have to practice consultation. NCD has always, I think, done an 
exceptional job of involving and working with and consulting with the disability NGOs, 
probably not a very good job always of consulting with provider organizations and some 
others. I think NCD by its nature and its history has a bias towards a consumer viewpoint 
in that regard. But the work that gets done there is mainly policy recommendations, the 
basis of which are developed by a professional staff who are paid and guided to do this 
work. Presumably, they are looking for data and information that comes forth from a 
variety of different sources to substantiate the recommendations that the Council actually 
considers, votes on, and then publishes. 

 

SELECTION OF PRIORITIES 

 

Q. So how do you decide, does the board itself decide what you�re going to pursue as 
your main topics for the next year, or two years, or three years? 

 

A. That�s exactly how it works. The Council, the 13 members, are actually ultimately 
responsible for dividing the budget and the budget actually creates certain perimeters in 
terms of the amount of work that can be done within those perimeters. Then, sometimes 
on the basis of hearings, staff recommendations and otherwise, the Council identifies the 
target areas, the priority areas, for the next year or two. 

 

Then the staff develops a work plan from the budget and the priorities, and comes back to 
the Council and says, you know, �If we do a report and some hearings on this matter, do 
you think that will give us sufficient information and a good basis on which to make 
recommendations?� I mean, the main product of the National Council on Disability, is 
recommendations. That�s the job of the Council, to make recommendations on disability 


policy to the President and to the Congress. Those recommendations, in my judgment, are 
only as good as they are valid. And they are only valid; it seems to me, if they are 
substantiated by good data, by good rationale. In order to get those data and that 
rationale, you have to do consultation with the community, you have to study the 
literature, and you have to synthesize all that. Ordinarily our recommendations are the 
result of studies and/or observations in the form of hearings or conferences or something 
of that nature. 

 

MAIN IMPACTS OF NCD 

 

Q. And what in your view has been the main impact or impacts of NCD, particularly in 
the last five years? 

 

A. Well, I must say I�m one of those skeptics who wondered if any agency making 
recommendations can have any effect at all. I was skeptical from the very beginning of 
the Council as an independent agency because I had seen the relative absence of 
recommendations from the prior Council, the Council before the independent Council, 
and those recommendations that were made seemed to have been virtually ignored. So 
the new Council that began in 1984 started by making a series of recommendations that 
included the disability rights law. ADA was clearly a result of that and that was clearly a 
huge impact, so it proved that it was possible for the Council to have an impact. Since 
then, there have been a number of other recommendations that the Council has made that 
have resulted in perhaps less evident, but I think significant, legislative changes. 

 

The Council actually recommended that the Independent Living Centers be more 
involved in determining how their money was divided at the State level, and from that the 
Rehabilitation Act was amended to include State Independent Living Councils. NCD 
recommended a number of changes in Social Security legislation. It�s also interesting to 
note that in the end when a recommendation is finally passed or finally implemented, it�s 
probably a result not only of the Council�s efforts but also of a variety of other groups. 
Sometimes it�s hard to say who even took the initiative to begin with because I don�t 
think there are too many original ideas out there. They sort of float to the surface every 
now and then, and sometimes it seems it�s the right time. 

 

Some of the accomplishments I would identify as of the Council, other groups might 
claim as their own and I think that�s good. I think that�s probably the result of having a 
democracy. Congress acts based on recommendations they get from a variety of sources, 
not a single source, and it�s hard to find examples of where any one body is the final bit 
of influence. But clearly, you can trace the history of the ADA and since then, I think the 
Council has made recommendations about virtually every aspect of disability that have 
been incorporated by one means or the other into the law. Most recently, the Council has 
been working on recommendations that relate to personal assistant services for people 
with disabilities, and we have provided a great deal of information to the Administration 


and to the Congress. Some of that has actually been used in the work that�s been put forth 
to date and I think more of it will be used. 

 

The Council has tried to collaborate, as you know, with the United States International 
Council on Disabilities (USICD) and other groups, and members of USICD, to influence 
the way the United States Agency for International Development (USAID) spends its 
money and whether or not they actually use people with disabilities in the consulting 
process, in the delivery process, and whether they actually make it work to benefit people 
with disabilities in other countries. These are things that the Council does. The other 
thing that NCD can do that other groups can�t do, because of our status as a government 
agency, is NCD can hold other agency administrators accountable in a certain way to the 
Council. I mean I just wrote a letter to the head of the USAID insisting that they meet 
with the Council, and that meeting was held. In my experience, I don�t think an NGO 
could have gotten the same level of attention. 

 

WHAT WOULD YOU CHANGE ABOUT NCD? 

 

Q. If you were to redesign NCD what would you change? 

 

A. I�m not sure I would change anything. I certainly wouldn�t without thinking in depth 
about it. I don�t think I could make any good suggestions about that. There aren�t any real 
outstanding failures, you know, there are no broken pieces that I would try to fix right 
away. It seems to have withstood the test of time and it seems to be as effective now as it 
ever was. It�s pretty well located; independence I think is very important. Some people 
argued and, in fact, the White House has argued, that it should be under the 
Administration�s wing and it would have more clout, but I don�t honestly believe that. I 
think if it were under an Administration�s wing, it might be easier to have certain kinds of 
meetings in the White House, but by the same token you wouldn�t be able to issue reports 
like the Council does that sometimes conflict directly with Administration policy. 

 

Q. If you weren�t redesigning, but if you had a wish list for NCD, would you add 
something, would you make the budget larger? Do you think being sort of lean allows 
you to do certain things that a bigger agency might not be able to do? 

 

A. Well, I think I would not mind a larger budget. I think a larger budget would be 
advantageous and I think the Council could manage a larger budget. You know, there�s a 
group in the Netherlands, the Dutch National Council, that was given a substantial 
amount of money, actually in comparative dollars, about 10 times the amount that NCD 
has. They use that money to good effect by conducting a major national public awareness 
campaign. I�d like for the NCD to be able to pay for advertisements about 
implementation of the ADA and tell people what their rights are on commercial 
television, the same way that the Transportation Department puts advertisements on 
television about buckle up for safety. 


 

PACE OF CURRENT PROGRESS 

 

Q. Some disability advocates have said that there has been a lull or even a backwards 
movement since the days of the fight for the ADA. Some people also say the younger 
people with disabilities don�t even realize that it wasn�t always thus, and they don�t 
realize the fight that it took to get this far. How do you see NCD�s role currently and 
what is your hope for what it will be doing five years from now? 

 

A. The issue of the changing generations and the zeitgeist in the disability community 
and so on is an interesting one. Frankly, I do believe that these younger people with 
disabilities who were not confronted by some of the frustrations that those of us older 
folks confronted in the early days of the disability rights movement, nevertheless have 
their own frustrations. So I don�t feel like we need to be feeling too self-conscious or too 
careful of the future of the disability movement, because I think that with young people, 
everything is relative. What to us might have been a big deal when we dealt with it, 
somebody else has faced and it wasn�t a big deal. 

 

I believe that the lack of health care and rehabilitation services for people with disabilities 
is going to become a huge issue. The current generation is going to be frustrated and 
rather shocked by the lack of sponsorship of rehabilitation and health care for people with 
disabilities. I think particularly that�s going to affect younger and older people. Older 
people are going to discover that there really aren�t systems of care for them in their 
homes; there aren�t enough nursing homes; they have to pay for their own nursing homes 
and it�s very expensive; and there�s nobody to provide assistance to them in their homes. 
I think that�s going to be a shock to a lot of people who are not disabled today but 
through the natural aging effect will be made disabled. 

 

 A lot younger people with disabilities are going to discover that their insurance policies 
and their Social Security policies only cover $2,500 of the cost of a wheelchair that may 
cost $25,000. These are things that are going to be shocking to people and that will 
inspire a new focus and a new fervor on the part of the disability movement. So I do think 
that social movements go forward in phases and they have their fits and starts and their 
ups and downs. The largest coming together in the disability movement clearly focused 
on the signing of the ADA, and I think there was a predicable kind of lull in activity after 
that. But I think there�s a new wave coming on and I love to have that kind of excitement 
by young people. The National Council on Disability has a Youth Advisory Committee 
and the American Association of People with Disabilities has a Youth Award and 
mentorship kind of program and if I look at the energy that surrounds youth with 
disabilities, then I�m fairly optimistic about that. 

 

FUTURE OF NCD 

 


In regard to the future of the NCD, it�s a very interesting question because currently the 
Congress acknowledges the importance of the NCD and they continue to reauthorize it. 
But to the extent NCD complains that there needs to be more legislation and those 
complaints or that advice confronts the Congress, who in this decade, I suspect, will not 
be eager to put in motion new programs that involve money, then the Council will 
ultimately come in conflict with both the Administration and the Congress. Depending on 
which one is supposed to be holding the bank book tight, that conflict will result at some 
point in some kind of backlash, I�m sure. I mean, if you�re a thorn in somebody�s side, 
the reaction is to pull you out. If the Council continues, as it has, to complain that there 
are not enough efforts to provide funding for rehabilitation, personal assistance services, 
etc., whoever they are complaining that to is going to get tired of hearing it. It�s either 
going to go away simply because it�s been said over and over again and nobody is paying 
attention, or if it�s said in a such a way that they have to pay attention, they are just going 
to muzzle it by de-funding or by de-authorizing it. I think that�s always a risk. So it�s 
important for the Council to have allies in the community because again, the good thing 
about a democracy is you can�t take something away that the people want. As long as the 
Council is representing the people I think we will be in a good position to continue to be 
a sounding board and a voice box. 

 

COALITION BETWEEN ADVOCATES FOR AGING AND DISABILITIES? 

 

Q. It seems to me that in a way, what you are suggesting, particularly with the issues 
around health care and rehab and so forth, you�re almost suggesting a kind of 
coalition of the aging and people with disabilities, who may in fact be one and the 
same? 

 

A. Yes, it will happen. It will happen quite naturally through the evolution of the 
demographics. It will also result in changing priorities because those older people are 
going to vote in a block and they�re going to want service. I�m not sure how the economy 
is going to deal with that because there are going to be relatively fewer younger people to 
be working and paying taxes, and yet more older people who want more services, so all I 
can say is that the economists better figure out how to squeeze that lemon. 

 


* This article originally appeared in DisabilityWorld 26 (2005), 
http://www.disabilityworld.org/12-02_05/gov/heumanninterview.shtml 

 
Integrating Disability into Mainstream Issues: 
an interview with Judy Heumann, 
Advisor on Disability & Development, World Bank and 
former Assistant Secretary, U.S. Department of Education *

 

By Ilene Zeitzer, conducted November 20, 2003 in Washington, D.C. 

 

 

 

 

 

 

 

Q. What do you feel is the impact you have had as a person with a disability on the 
governance process, using your experience at the Department of Education and now at 
the World Bank? 

 

A. It is very clear that, like in gender, where women, just by their presence, played a 
influential role in changing policies and practices and the views of governance 
components of organizations and the day-to-day operations of organizations, the same is 
true in the area of disability. So even if you don�t have a job which specifically focuses 
on disability, as I have always had, there still is an effect that is gained by having 
disabled people working in any sector, whether it�s public or private. However, it�s also 
true, I assume, that in the early days as women began to move into positions of 
responsibility but were clearly still in a minority, they had to be constantly aware that 
they were breaking new ground, were under extra layers of scrutiny as representatives of 
their �group� or minority�. 

 

I continually have felt that there is a major difference in being based in a large institution 
like a government department or the World Bank family, as opposed to being in a 
community-based, disabled-run organization, because in both these jobs there hasn�t been 
a day that goes by where I�m not reminded of the fact that in addition to whatever my 
workload is, I�m also trying to deal with in a broad, comprehensive way, the inclusion of 
disabled people into the work of the federal government, into the work of the 
international community. 


 

CAN I GO ACROSS THE STREET? 

 

I have to make the observation that even in 2004, people are still at a very baseline level 
of knowledge about disability. 

 

Today someone called me about a meeting that was being set up, and there are going to 
be a number of people from the Bank invited to this meeting. The person who called me 
said, �Can you come to the main building?� For a second I thought, �I think this woman 
is here in DC and I think the main building is across the street and I go there all the time.� 
And I said, �What building are you talking about?� And she said, �The MC building.� 
The MC building is diagonal to my office. So I said, �I go there all the time.� But I use 
this as an indicator of how people�s lack of exposure to those of us who have disabilities 
is so significant that people are still continually thinking that they have to compensate, to 
come to me because I can�t go across the street, when in fact in my motorized wheel 
chair, except for steps, I can go any place that anybody else can go and I can go faster 
than they can go. But they don�t see that. 

 

So here I am trying to look at developing intricate policies and budget issues, etc. and 
they�re still trying to figure out can I go across the street? 

 

And this is perhaps where the gender parallel differs to a significant degree. Because 
people�s views of what women may be able to do or what they should be doing is or was 
certainly not the same as what many believe or believed men could do, but it was never at 
the level of, �Can you come across the street?� And this is true whether someone is blind 
or deaf or if they have a cognitive disability. People don�t distinguish among disabled 
people who might have difficulty getting across the street from those who can accomplish 
that easily. For instance, if I had a manual wheelchair which I couldn�t push myself, if 
someone asked me, �Can you get across the street?� I would think, �Oh, they�re 
observant, they noticed that I can�t push my chair well.� But this person has seen me 
zoom around. And this is not an exception. When I first came here and I was going 
around and meeting with the senior leadership of the Bank, going to their offices, in the 
beginning, the schedulers would say, �So-and-so will come to your office.� I realized, 
having worked in the federal government and understanding pecking orders, that vice 
presidents don�t come to advisers, advisers go to vice presidents. Once in a while, a vice 
president may want to kind of slum it and come around to offices, but as a rule that�s not 
what they do. So I finally just had to say to my staff, �I will not have them come to my 
office, period. They need to see that I can get to their offices.� 

 

THE CONSTANT CHALLENGE OF LOW EXPECTATIONS 

 

It takes time. This awkwardness and level of low expectations existed at the U.S. 
Department of Education too�especially where people hadn�t worked with a disabled 


person, or they hadn�t worked with a disabled person at an equal level. I was at a senior 
staff meeting at Education once, it was the first couple of months I was there, and one of 
the senior staff was saying, �Give me some information on a particular potential political 
problem.� And s/he said, �And if we don�t do this, we�ll be cut off at the knees.� And I 
said, �And then you�ll send them to me for services,� because I administered the 
rehabilitation office. One person who had a hidden disability laughed but the person 
chairing the meeting said, very embarrassed, �I�m sorry. We�re still learning the 
appropriate language.� And I literally put my hands like a time-out and I said, �I was 
joking!� 

 

But I say this in relation to governance issues because we fail to realize that we have an 
urgency to make changes and we have to figure out how we also begin to allow people to 
feel comfortable not only with those of us who are their colleagues (and comfort is 
maybe the wrong word but there is a truth about the issue of comfort�also with gay 
issues and others) but also for people to really be able to see that you have the same goals 
and aspirations as they do, and the groups that we�re working with or for have the same 
types of barriers and opportunities as others. And I think that�s one of the biggest 
challenges. I was at Education for seven and a half years and it took a while before 
people outside of my office really accepted me for who I was, and could listen to what I 
had to say in an equal way and agree or disagree based on the substance of the discussion, 
and not based on their feelings about how what they said or did would affect me. 

 

NECESSITY OF INVESTING TIME TO GAIN TRUST AND POSITION OF EQUALITY 

 

Q. Do you think that they actually held back because they were afraid of how you 
would react? 

 

A. They might have, or they were more negative. Another thing that I experienced when I 
was first at the Department was everybody at my level of job was in part brought in 
because they were an advocate, they were a civil rights advocate or a union advocate, a 
women�s advocate, they were proactively working on a position which the administration 
agreed with and felt that they represented an important constituency and they wanted 
them to be a part of the team. Early on, within the first six months I believe, the 
Department of Education was holding satellite meetings with the Secretary once a month 
at the Chamber of Commerce. I didn�t go to the first meeting; I went to the second one. 
When I got there, I had no idea that the place wasn�t accessible from the front entrance, 
so I had to go in through the kitchen, and I was mortified. So at our senior staff meeting 
the next week, I said that I didn�t think it was acceptable for us to be holding our 
meetings at the Chamber because it�s not accessible, and there was not a lot of support 
for my position. I guess because we were given the facilities for free. 

 

They did eventually put a ramp in the front so that we were able to come in the front 
door, but the story is as follows. A couple of weeks later there was a piece in The 


Washington Post about a group of disabled people that I didn�t know and still don�t 
know, who had a demonstration outside of the Chamber of Commerce protesting the lack 
of accessibility. And I was called in by the Chief of Staff to ask me if I�d seen this piece, 
which I had. Gradually I realized during the course of the discussion that he thought that I 
knew these people and that I had put them up to demonstrating outside the Chamber of 
Commerce. And I remember that I realized that he was not presenting me with 
information, just pointing out, �Isn�t this interesting?� but not directly suggesting to me 
that I was responsible for this. I said to him that I had no idea who these people were. I 
said, �I didn�t know anything about this until today, I think it�s great that they did it, but I 
don�t who they are.� And I made some kind of a comment that I hoped that he got rid of 
any preconceived notions of what I did or didn�t do. There was this sort of litmus test that 
I felt in the beginning. But then over time it went away and people got to know one 
another and realized everyone was on the same team. 

 

So governance for people who are coming in on a new issue, like disability, is difficult 
because you have many, many issues that you have to address at the same time�only 
one of which is the substance of the particular issue. Equally important is really allowing 
people time and space to accept you and to be willing to respect you as an equal person. 
Once they do, then they can hear the issues you are raising more appropriately. But if 
they don�t, then they frequently will think that there�s an ulterior motive behind what 
you�re saying. So, the more disabled people, the more women, gays/lesbians, whatever 
the particular group is, can come in to work in whatever the entity is, the more people 
will see 1) that everybody is different, 2) that we can have a particular objective in 
relationship to the way we believe policies and practices should be occurring. But they 
also can begin to realize that they don�t have to be afraid of us for what we stand for and 
that we can be challenged like other people and our ideas aren�t necessarily good or bad, 
they�re not good because we are whatever we are; they�re not bad because we are 
whatever we are. And I think that�s a very critical issue. 

 

EVEN IN RICH COUNTRIES, WHAT WE ALREADY KNOW ISN�T ALWAYS APPLIED 

 

Moving our issue away from being a marginalized issue is very difficult, and one of the 
big problems I think also is particularly in addressing a new issue, which disability is�
even in developed countries, it�s still a relatively new issue. So even as you begin to get 
people to agree that what is happening is wrong, then they want to know how to fix it and 
in too many cases we don�t have a quick answer. We do in things like accessibility, but 
not in every aspect. In developed countries, the answer is yes, we know what to do. But 
even when we know what to do, it�s not always done. 

 

For example, a staff member just came back from a meeting of the Bank in Paris and they 
had a meeting not in the Bank building but in a brand new French building that wasn�t 
accessible throughout the building. We had disabled people going to the meeting and 
when they went and did a review of the building, they had to build ramps in parts of the 


building for the person in a wheelchair who needed to have access to different floors. So 
you can�t even take for granted that in new construction in wealthy countries�things that 
we have known how to do for decades�are actually being done right. Or the statement 
that is still made the world over: �We don�t need to put a ramp into the school because 
there are no disabled people who go there.� 

 

But I think what�s also important about whatever particular group today disabled people 
are moving in is that we can then get other people who may be affected by disability or 
not to argue our points, and I think that�s also where we gain legitimacy. When the 
women�s issue is argued not just by women, when the disability issue is argued not just 
by disabled people, then I think we begin to see these issues become more mainstream. 

 

ULTIMATELY, MOST ISSUES CAN BENEFIT FROM A DISABILITY LENS 

 

Q. Do you see people looking to you for advice, both in this job at the World Bank and 
when you were at Education, on issues that go beyond the issue of disability per se? 

 

A. I don�t exactly know how to answer that because in part what we�ve been saying here 
is every issue should be perceived of as benefiting from a disability lens. In the end we 
may not prioritize that we can do everything, but any office in the Bank should ask if 
disability is a component of the work we could be doing here. 

 

For example, I met with the infrastructure people. There are a series of issues they are 
working on. Maybe one of the issues they were working on didn�t really deal with the 
issue of disability, building dams or something like that, but of the six issues, five are 
related [to disability]. Then the question is can you do all five at once? So one of the 
things we talked about is, all five could benefit, but let�s start with one or two things so 
that people begin to get a better understanding of what we mean when we say to include a 
disability lens, so that people can begin to learn by experience what to do. So, yes things 
are slowly but really happening here. 

 

I�ll give you an example. Today I went to hear a presidential lecture, for HIV/AIDS day 
and a staff person from Ethiopia came up to me and said, �I want you to know that at the 
meeting this morning with the regional vice presidents the issue of HIV/AIDS and 
disability was raised.� I was very excited because I wasn�t at the meeting. So that means 
that the person from Ethiopia who was there at the meeting had conveyed the message 
that in Ethiopia the intersection of HIV/AIDS and disability is important. There�s funding 
going to it and they wanted acknowledgment of it. So I�m seeing that in numbers of 
places. 

 

Yesterday I was at another meeting where they were laying out the agenda and somebody 
said, �Where�s disability?� and I almost fell out of my chair. So I�m actually pleasantly 


surprised, given the few disabled people who are here at the Bank, that disability is not 
always being looked at only because of our instigation. 

 

I really don�t want to exaggerate it, but I do want to say that people are slowly 
recognizing that this is a credible, intersectoral issue. 

 

CONTINUAL EDUCATION ON DISABILITY ISSUES PAYING OFF 

 

Doing all this education about disability is starting to pay off in a number of ways. 
There�s a disabled women�s reproductive health project going on in India, supported by a 
Bank grant applied for through the usual channels. Someone I know just came back from 
Hanoi, reporting to a conference that they are tearing up the streets and adding curb cuts. 
I was there a year ago and there were no curb cuts.. Now what was good about that is that 
I�ve been saying in the Bank, if we�re concerned about economics, we have to be 
concerned about spending money wrong. Whether it�s our money, or a donor�s money, or 
even the government�s money, we need to be saying that building streets inaccessibly is 
not only wrong, but it�s going to cost money and as disability groups become more 
powerful, like in Hanoi, they are going to require that money be spent on retro-fitting. 

 

There is a push now on to recruit disabled professionals into the Bank. They�re bringing a 
consultant on to actually look at what to do in order to do that. The president is really 
pushing that whole issue with junior professionals and volunteers on up the ladder. If we 
had 50 (or even 10 or 20) disabled people working at the Bank who were not only 
disabled but also understood the bigger picture, it would make a real difference. What I 
say to people at the Bank is that we�re looking for people who are knowledgeable about 
disability in whatever the particular area is that we�re hiring. Yes, we would like to bring 
disabled people in. We also want to bring non-disabled people in who understand the 
substance of the issue. But it is really important, when you sit down at tables, to have 
people who can say how disability fits into a particular issue. So, on the staff survey this 
time there are questions on disability, the questions are not good, but the questions are 
there. There is still too much medical stuff that goes on here. Disability is too focused in 
the health unit still, but nonetheless it�s improving. 

 

I believe what�s very important in all of this, is that we have to have a very strong 
disability movement at the national level, at the provincial level, and the county and city 
levels, or village levels, because it is that healthy tension which exists between the 
community and the public and private sectors which really can help advance an issue. It 
has to be that the entity believes that if it doesn�t include disability, something negative 
will happen. Whether they think it�s a big or little thing, is an issue. But once you get 
inside, it�s also then to be able to really show how this can be mainstreamed. And in a 
case of development or working in the government, it�s to really show how the 
organization cannot achieve its identified objective. So in the case of any of the U.N. 
families, the Millennium development goals will not be achieved if disability isn�t 


effectively mainstreamed. Now at the moment we are absolutely not effectively 
mainstreamed. And we have until 2015 for this to happen. So my assumption would be 
that at some point, people will begin to realize that this is an issue. 

 

NEW BANK REPORT ON LACK OF DISABLED CHILDREN IN SCHOOL 

 

In the Education sector of the Bank they�ve developed a document which says that 
basically of the 105 or 115 million children not in school, 30�40 million of them are 
disabled. That�s a very big deal, that the Bank is willing to say that this is a problem, and 
if it is not addressed, then they are not doing their job. This makes it easier for us now to 
be working with this office , brainstorming and looking at projects to develop and getting 
some funding to be able to move some of the research forward in the country on local 
levels. At the same time, it now becomes easier to give legitimacy to the disability 
organizations at the international and national levels that are working on this issue. Now 
in saying that, it will take years to make real progress and it will never happen if the 
driving force is not also at the local level. So the question is how to ensure that this 
happens, how do we transfer this driving force to the local levels. 

 

What I found at Education was that the more I could get the Secretary and the Assistant 
Secretary to meet with disabled people, to visit programs that included disabled people or 
parents, the more they began to see how this was a part of their work. But again, it�s not 
like one discussion or one visit will do the job. If you have somebody on your staff who 
continually works on the issue, like when I worked at the Department, I had two people 
on my staff that I consciously brought in because they came from minority communities. 

 

That was my commitment to myself that in my special staff, I would bring people in who 
represented racially diverse communities. Because I knew that with the best of intentions, 
if I didn�t have people that would continue to come to me and say, �What about this? You 
didn�t do that,� I would make mistakes. And it wasn�t that I was consciously not 
remembering things, but I couldn�t remember it all or I couldn�t do it all. So that�s again 
why I think, looking at the issue of diversity, from a disability perspective, cuts across so 
many slices. And we have to be able to bring in all these different levels and help educate 
all of us, not only about disability but the substance of the topic and what we have to 
learn and how to encourage people to put money into things when they are given 10 
problems, and we can only deal with three of them, why should we be dealing with 
disability. And to try to get them to see that this too is a mainstream issue. 

 

VIEW OF DISABILITY A CULTURAL ISSUE? 

 

Q. What is the Bank�s response when people/governments say that not accepting 
people with disabilities is a cultural issue? 

 


A. That�s exactly one of the points that I think is very important. You have to, in my 
view, do a number of things. You have to have people at the local level who can say, 
�This isn�t true� or even it is true, �This is not the right approach, and therefore we have 
to work for change.� And again, looking at gender as an example, historically girls didn�t 
go to school. Why did girls need an education? Then you began to have girls go to school 
and you began to get this data showing the importance of girls going to school and all the 
other indicators that changed as a result of girls going to school. So, here it�s to be able to 
say, �Yes, in point of fact today there may be parents who don�t want to send their kids to 
school because they have a disability and they don�t want their children to be mocked and 
there may be kids who are doing that.� And there may be parents who don�t want 
disabled children in the school, but do we really believe that�s the right policy and what 
should we be doing to address it? So it is true in many of the countries that we deal with, 
there is a friction around it. But on the other hand, it�s also a fact that that friction has 
existed everywhere, on multiple topics, and you just have to move forward. 

 

COLLECTING HARD INFORMATION 

 

So, I think it�s learning by doing and working to learn about, collect hard information 
about examples of places where things have been done differently. In the development 
context, sometimes it�s showing examples from more developed countries. In India, when 
I was there earlier this year, they had some wonderful projects. Every country now has 
great disability groups and when you sit down and talk with those groups and you get the 
Bank or government to sit down and talk, they�re the ones that have to push the agenda 
forward. We didn�t have a law in this country that said you couldn�t discriminate in the 
area of education until 30 years ago so it�s not that we�re this great role model. We�re a 
much newer country and we don�t have all the history of religious discrimination, etc. I 
personally believe that in African countries where disabled people are becoming a part of 
the entire governing structure, that if they stay on target with the democratization that�s 
going on, disabled people will proportionately do better in those countries, quicker, then 
we have in our country because our barriers, while no longer being legal, are so very 
pervasive. 

 

NEW AFRICAN MODELS INTRIGUING 

 

For example, the new African models that say disabled people have to be involved in 
every point of influence is so not true in this country, so that you can see the difficulty in 
influencing day to day activities. Here, there aren�t many disabled people on city 
councils, there aren�t many disabled people on county boards, there aren�t many disabled 
people that are on committees and commissions, there aren�t many disabled people in 
state legislatures, in the federal government. The few that are there, they can�t just be 
arguing disability. They aren�t there just to do that. They�re there to govern, and only one 
component of what they are doing is disability, or gender, or whatever else. But when 
there are so few people, that�s part of the problem. I mean, I�ve never spoken to U.S. 


Congressman Langevin about these issues, but I�m sure when he first came to Congress 
he had to be dealing with some of the same issues. 

 

But at the end of the day, the more people we have in every level of governance who 
have disabilities, not all who are going to agree on positions on issues, but the more it 
becomes a normal part, an everyday happening, then the more we can move on and deal 
with the real governance issues: budgets, policies, practices, etc.. 

 

ENGAGING WITH THE NEXT GENERATION 

 

I think it�s very exciting to see what�s going on with the U.N. Convention and all these 
different things, and I absolutely know that I�m going to die with the world being a better 
place for disabled children and adults than it was when I first had polio in the 1950s. But 
the reality is, in the richest country in the world, I�m still going to live in a society where 
most people�s homes are not accessible, where in point of fact, while more people are 
beginning to understand disability, but as I go down the street everyday, parents will look 
at me and still say to their kids, be careful, watch out and try to pull their kids away from 
me. And I always talk to kids, because it embarrasses parents. They don�t know what to 
do, because the kids will engage, most of them. And to me, getting the next generation to 
recognize that disability has to be integrated into what�s happening is what is important. 

 

 


* This article originally appeared in DisabilityWorld 22, 
http://www.disabilityworld.org/01-03_04/gov/langevin.shtml 

 
�My Being Here Has Prepared Congress 
for Other Individuals with Disabilities to Serve:� 
an interview with U.S. Congressman James Langevin *

 

By Ilene Zeitzer, conducted November 6, 2003 in Washington, D.C. 

 

 

 

 

 

 

 

Q. What do you think has been the main impact of you being a person with a disability 
in a position of power and do you see your position as advancing the agenda of 
individuals with disabilities? 

 

A. I certainly do see my presence here, my election to Congress, as furthering the role of 
people with disabilities in society and being able to serve in government. In many ways 
perhaps my being here is the next phase of what the founders or the authors of the 
Americans with Disabilities Act (ADA) had envisioned in terms of including disabled 
people in all aspects of life, including service in government. My presence here in 
Congress, my election to Congress, has probably served to achieve three things. First, it 
has forced the Congress to be better prepared for individuals with disabilities to serve in 
Congress. There have been physical things�changes�that have had to be made since I 
arrived here, such as renovating my office, making some changes on the House floor, 
adding a new speaker's lectern in the well of the House, removing seats on the floor of 
the House of Representatives. So, for the first time since the body was created, I would 
have a place to pull into on the floor of the House. When I originally was speaking, I just 
spoke using a lapel mike, and then they changed the lectern so that I could use the same 
podium that everyone uses. The lectern easily raises and lowers to anyone's height and I 
can pull right up and can speak right from the well like anyone else and get my feet 
underneath the podium so I can be close to the microphone. 

 

I would also hope that my election to Congress has served to inspire and motivate other 
disabled people to serve in government, to know that they can achieve an election to 


office, or any goal or desire they have to work in any field. I hope and like to believe that 
many of the lives that I touch, I may never even meet these people, but maybe just seeing 
me doing what I'm doing and seeing that I have gone after my dreams and seen them 
achieved, that hopefully will help them to know that they can do the same thing. 

 

CONSCIOUSNESS-RAISING 

 

The third thing that it [my position] does is it is a consciousness-raising issue among my 
colleagues. Certainly my being here has prepared the Congress for other individuals with 
disabilities to serve here. Hopefully it has inspired people out in the world or around this 
country to serve in government or do other things, but also it's been a consciousness-
raising issue I know for my colleagues, they've told me. They come up to me and say, 
�thank you for being here. Just your presence is an eye-opener.� Just by observing the 
challenges that I face has been a consciousness-raising issue for them. But it's also an 
opportunity, so the fourth thing I guess I would say, is that it gives me an opportunity to 
further the agenda of opening the doors for disabled individuals. It gives me an 
opportunity to continue to make a difference and open the doors even further then those 
who first authored the ADA had envisioned, and I hope that I am making a difference. 

 

It's allowed me to do things like create the Bipartisan Disabilities Caucus. It has helped 
me to promote and speak with authority on disabilities legislation. Certainly when I speak 
on disabilities legislation, I have credibility on the issue. I don't have to convince people 
on the floor that I know what I'm talking about or that this is something that will help the 
disability community. It's one of those things where, you know it's like a woman 
speaking on women's issues or an African-American speaking on minority issues. I live 
disabilities, I grew up with a disability, so therefore I can convey my experience, not just 
what I think about it, but my experience, on the issue to my colleagues. They have been 
very receptive to supporting the things that I've pushed for, both sides of the aisle. Now, 
election reform is another thing. So, I guess those are the four areas where my service 
here has hopefully made a difference. 

 

Q. Are you the first Member of Congress to have a disability? 

 

A. I'm the first quadriplegic to serve in the United States House of Representatives and 
the first one to permanently require the use of a wheelchair. 

 

Q. Have there been others who were hearing-impaired or blind or had other types of 
disabilities, do you know? 

 

A. There have been Members from time to time who have temporarily been in a 
wheelchair because of a stroke or something like that. Charlie Rangel was just in a 
motorized wheelchair for a little bit because he blew his knee out. Max Cleland [who 
was] in the Senate is a triple amputee. But in terms of someone who is blind, I'm not sure. 


 

Q. And, of course there was Senator [Robert] Dole. 

 

A. Yes, and also Senator [Daniel] Inouye is an amputee. 

 

Q. In terms of policies, you talked about the influence you have had on a personal 
level, both with your constituents and others throughout the country, and also on your 
colleagues. But in terms of policies per se, have you been able to be influential because 
of your disability in terms of policies, new legislation, etc.? 

 

INFLUENCE ON LEGISLATION & POLICY 

 

A. The first two that come to mind are the Help America Vote Act, ensuring accessible 
equipment is available at the polls for people with disabilities as well as physical access 
to the polls. Those two things were major achievements. And the other is making sure 
that we are using reconstruction funds in such a way that ensures that accessibility [for 
people with disabilities]�is a forethought rather than an afterthought as we are using 
funds to reconstruct Iraq and Afghanistan. 

 

Q. Do your committee assignments reflect your interest in disability issues? Do you 
have any choice in the committee assignments? 

 

A. Yes, I have choices in which committees I'm assigned to, and from time to time, it 
impacts on my service on the two committees that I serve on. Also, previously, when I 
was on the Small Business [Committee], I was able to play a role there in terms of 
bringing awareness of disabilities issues and how it affects and interacts with the business 
community. We had a hearing, for example, in which we brought in employers who deal 
with employing people with disabilities in their companies. Their testimony showed how 
those employees are valuable and dedicated members of the workforce who help 
companies to grow and be profitable. On Armed Services and Homeland Security 
Committees where I currently serve (I've taken a leave of absence from Small Business 
Committee to serve on Homeland Security because you can only serve on two 
committees at a time), both give me the opportunity to advocate for disabled people from 
time to time. But you should know that in my service in government, I've never made 
disability issues my primary focus. Just as being disabled is a part of who I am, it is not 
who I am. That is reflected more in my service here in Congress. I am working on so 
many different issues, disability issues are one of them. I don't seek to be the sole 
spokesman for disability issues, or in a sense the poster-child for those issues. I do 
recognize that I have a unique perspective on those issues and I have a responsibility to 
help further the cause. I do take those opportunities when they are presented or I seek 
them out from time to time, but again it is not the sole focus of who I am or what I do 
here and I have many other responsibilities that I take very seriously. 

 


Q. Do your colleagues come to you for advice in broader areas, beyond something like 
National Institutes of Health funding for example? If they were talking about 
transportation issues or infrastructure issues, would they think to seek your opinion as 
a person with a disability? 

 

NECESSITY OF BUILDING EXPERIENCE AND KNOWLEDGE 

 

A. Yes, although I think when they ask my advice or input on disabilities it's because it's 
something I have experience with. The more I gain in seniority as I'm here, the more I'm 
respected on other issues because of my work on the committees. I'm certain my 
colleagues will interact with me more and seek my opinion more on a wider array of 
issues. But I think it comes with tenure in service and length of service and getting 
known for an issue. But yes, I do find my colleagues on occasion do come to me with 
various interests that they have or concerns that they have, and for my support on bills 
that don't necessarily have anything to do with disability issues. By way of example, I 
was a former Secretary of State before I came to Congress and one of the cornerstones of 
my administration as Secretary of State was to have overhauled our entire election 
system, back in 1998. There was no one else in Congress who had overhauled an entire 
election system in a state, so I was able to now help do for America what I did in Rhode 
Island. To this day, we are still looked to for advice on election systems by various 
colleagues. 

 

Q. Is there quantifiable progress in the education goals, for example, for people with 
disabilities in terms of employment or return to work? What are your thoughts about 
that? 

 

A. Well, the two things that come to mind are IDEA legislation and funding for children. 
Certainly they have had a measurable effect on how children learn and are prepared to 
enter the workforce. The other piece of legislation that's important is the Assistive 
Technology Act that has provided funding and resources for assistive technology so that 
it helps to level the playing field and helps people with disabilities to be more 
independent and more productive in the workforce. Vocational rehabilitation is also 
important. Transportation programs so they can get to and from work have had an effect. 
And clearly the mother of all the acts and pieces of legislation would be the ADA that has 
fundamentally changed how society looks at the disabilities issues in general. No longer 
when you have a ramp or a curb cut or something, no longer is it a courtesy that you are 
providing for someone with a disability, it's a civil right that you have access to public 
accommodations and things like that. 

 

FUTURE PRIORITIES 

 


Q. What do you personally want to work on concerning your goals to improve the 
quality of life for disabled individuals, or any other goals that you have? And how do 
you plan to act on or implement these goals, what's your game plan? 

 

A. Healthcare, transportation, and greater opportunities in terms of people with 
disabilities entering the workforce. Healthcare is a major need for people with disabilities 
and the Ticket to Work Program has made some progress in that area in terms of opening 
up doors, but even the Ticket to Work Program doesn't go far enough. It's a good start, 
but we need to do better so the people who are on public assistance can go to work and 
not risk their inclusion to healthcare. That's one of the major obstacles for people who are 
on public assistance who are disabled, in terms of getting them off of public assistance 
and helping them to enter the workforce so that they become taxpayers as opposed to 
consumers of tax dollars. But people with disabilities face extraordinarily high, 
disproportionately high, medical costs and they cannot afford to lose their health 
insurance. And, if it means not working so that they keep their health insurance, that's the 
choice that people unfortunately have to make, and they do make that choice to stay 
home so they can keep their medical insurance. We shouldn't have individuals with 
disabilities who are able and willing, and ready to work be forced to stay home and not 
work because they need to keep their health insurance. We also need to find a way to get 
them to work. What good is being able to fill out an application if you can't make it to 
work to do the job? Transportation is a major obstacle and we want to make sure that we 
continue to chip away at that problem and provide adequate transportation options for 
people with disabilities. Obviously, through the ADA making sure that workplaces are 
accessible, we can educate employers about what the ADA is all about so they don't have 
to be afraid of what the ADA means. It's more about achieving reasonable 
accommodations for workers with disabilities, not about forcing major expenses to be 
made, or altering the workplace in such a way that it becomes cost prohibitive. So 
continuing to open up the workplace for people with disabilities would be a major goal of 
mine. 

 

Q. Are you concerned about the recent decisions from the Supreme Court that seem to 
narrow the scope? 

 

A. I am, and the only good decision from the Supreme Court on disabilities is the 
Olmstead decision. I think people should be able to stay in their home if that's at all 
possible, as opposed to going to a nursing home, but again that's going to take money. 
The MiCASSA (Medicaid Community Attendant Services and Supports Act) legislation 
that is before Congress right now is a major step toward achieving that. 


 Selected Articles and Reports 
Published in DisabilityWorld 2000�2005: 
NORTH AMERICA 

 

The following lists selected news articles and reports from North America, 
published in DisabilityWorld (www.disabilityworld.org) 2000�2005, 
documenting the rise of activities pertaining to 
disability and good governance in that region. 

 

 

 

CANADA 

 

Canada elects first quadriplegic MP 

DisabilityWorld 24 (2004) 

. http://www.disabilityworld.org/06-08_04/gov/briefly.shtml

 

Newly elected to the House of Commons, Conservative MP Steven Fletcher hopes to 
break new ground for Canadians with disabilities as Canada's first quadriplegic MP. The 
32-year-old, who was the youngest president of the Manitoba Progressive Conservative 
Party, is ready to tackle his campaign priorities that include health care and education and 
hopes to raise awareness among politicians and the news media about issues facing 
disabled people. 

 

New Ontario legislation aims to make Ontario completely accessible within 20 years 

DisabilityWorld 25 (2005) 

. http://www.disabilityworld.org/09-11_04/access/briefly.shtml

 

The government of Ontario has introduced legislation to phase in new accessibility 
regulations for businesses with the goal of making Ontario fully accessible to persons 
with disabilities in 20 years. The first piece of legislation introduced in this fall session, 
the Ontarians with Disabilities Act, calls for separate consultations with large and small 
businesses, the manufacturing and retail sectors as well as persons with disabilities to 
determine what standards would be required and when they would be introduced. 

 


 

USA 

 

USAID Supports Rights of Disabled Guatemalans in Democratic Processes 

DisabilityWorld 1 (2000) 

. http://www.disabilityworld.org/March2000/English/Briefly1legis.htm

 

A U.S. Agency for International Development team visited Guatemala in January to 
discuss specific development challenges and human rights concerns of people with 
disabilities. Janet Allem, coordinator for disability policy, said the group met with 
representatives of the Guatemalan Human Rights Legal Action Center (CALDH) and the 
National Council for the Disabled (CONADI). In last year's election, the team ensured 
the availability of Braille ballots and provided grants to CALDH and CONNADI to 
support their efforts in reforming the law and in developing implementing regulations. 
CALDI was founded in 1989 to promote, defend and provide legal assistance and training 
on human rights, and it is an advocate for compliance with the 1996 disability law. 

 

U.S. State Department's Human Rights Reports Include Disability Focus 

By Kay Schriner, DisabilityWorld 2 (2000) 

. http://www.disabilityworld.org/April-May2000/Governance/StateDept.htm

 

Disability activists around the world can look to the U.S. State Department's annual 
human rights reports to help them push for reforms in their own nations. The yearly 
reports are regarded as a useful took for activists interested in ensuring that people with 
disabilities are not discriminated against by their governments. The February 2000 
reports are now available on the State Department's website www.state.gov/www/ 
global/human_rights/1999_hrp_report/99hrp_index.html. The reports describe how the 
government is structured (e.g., constitutional monarchy, parliamentary democracy), and 
provides basic information about the political process and the economy. Their main 
purpose, though, is to report on a nation's human rights record. The reports cover political 
freedoms, prison conditions, civil liberties, and religious freedom, among other topics. 

 

U.S. Agency for International Development Issues Progress Report on Disability Policy 

DisabilityWorld 2 (2000) 

. http://www.disabilityworld.org/April-May2000/Governance/USAID.htm

 

Janet Allem of USAID reports that the Second Annual Report of the USAID Disability 
Policy Team is now available at http://www.info.usaid.gov/about/disability. Two years 
ago, USAID issued a policy to encourage inclusion of people with disabilities in all 
USAID activities. The first Annual Report, issued January 1999, recommended the 
adoption of five intermediary goals to increase inclusion of people with disabilities. This 
Second Annual report details progress made to implement those goals. 

 


U.S. Government Requires More Access to Emergency Information 

DisabilityWorld 3 (2000) 

. http://www.disabilityworld.org/June-July2000/access/Access.html

 

The Federal Communications Commission has adopted rules to require broadcasters, 
cable operators, and other multichannel video programming distributors to make local 
emergency information that they provide to viewers accessible to persons with hearing 
disabilities. The FCC concluded that critical aural information that affects the safety of 
viewers must be made available to persons with hearing disabilities. This action further 
implements Section 713 of the Communications Act, added by the Telecommunications 
Act of 1996. Pursuant to Section 713, the Commission previously adopted rules and 
implementation schedules to ensure that video programming is accessible via closed 
captioning to persons with hearing disabilities. Because the closed captioning 
requirement will be phased in over a number of years, today's action ensures that people 
with hearing disabilities will receive critical emergency information in an accessible 
format, even before the phase-in of closed captioning is complete. 

 

New Jersey Court Rules that Persons Hospitalized for Mental Illness Presumed 
Competent to Vote 

By Kay Schriner, DisabilityWorld 3 (2000) 

. http://www.disabilityworld.org/June-July2000/Governance/NewJersey.htm

 

The New Jersey state appellate court has ruled that individuals who are hospitalized for 
psychiatric treatment must be �presumed competent� to vote and cannot automatically be 
prevented from voting, according to an Associated Press article by John P. McAlpin. The 
ruling settles a dispute which arose when the Mercer County Republican Committee 
contested absentee ballots cast in the 1998 election by patients at the Trenton Psychiatric 
Hospital. The state appellate court ruled that the ballots must be counted because these 
patients had not been found by a court to be mentally incompetent. 

 

International Disability Law & Policy Symposium Held in USA 

By Deborah Kaplan, DisabilityWorld 5 (2000) 

. http://www.disabilityworld.org/10-12_00/news/symposium.htm

 

An International Disability Law and Policy Symposium, �From Principles to Practice�, 
was held in Washington, D.C. from October 22 to 25, 2000. Sponsored by the U.S. Social 
Security Administration, and several other U.S. government agencies and presented by 
the Disability Rights Education and Defense Fund, Inc. (DREDF), the conference was 
attended by disability legal rights advocates and attorneys from over 30 countries. The 
agenda included plenary presentations, with several by authors of papers that were 
commissioned for the conference. Participants also had plenty of time in small workshops 
to become better acquainted with each other and share information and strategies for 
action. Participants came from every continent, from countries such as India, Greece, 


Kenya, Mexico, Spain, Uganda, Canada, Argentina, Macedonia, Japan, and, of course, 
the USA. 

 

The Future of Disability Policy 

By Jonathan M. Young, DisabilityWorld 5 (2000) 

. http://www.disabilityworld.org/10-12_00/resources/policyarticle.htm

 

This substantive article describes the precept, goals, and core policies of our nation's laws 
relating to people with disabilities and seeks to provide a framework �that can be used as 
a lens or guidepost to design, implement, and evaluate generic, as well as disability-
specific, public policies and programs to ensure meaningful inclusion of people with 
disabilities in mainstream society.� Appendices to the article include an overview of 
major disability-related legislation enacted since 1956, as well as an overview of the 
�Emerging Disability Policy Framework� in narrative form that can be used for training 
purposes. 

 

The Power of Symbols and Images: After Long Battle, Statue Dedicated of FDR in a 
Wheelchair, Washington, D.C. 

By Barbara Duncan, DisabilityWorld 6 (2001) 

. http://www.disabilityworld.org/01-02_01/arts/statue.htm

 

A crowd turned out in bone-chilling weather on December 10 to celebrate former U.S. 
President Clinton's symbolic goodbye to the disability community�the unveiling of a 
statue depicting President Franklin Delano Roosevelt (FDR) in his wheelchair. Like 
many achievements of Clinton's eight-year administration, this one was rife with 
controversy, pitching those who believe that FDR's preference for hiding his paralysis 
should be respected, against the views of disability advocates who wanted a realistic 
portrayal of FDR's use of a wheelchair. After FDR contracted polio in 1921 at age 39, he 
never took another unassisted step. After years of wrangling with Congress and the 
Memorial Commission and $1.65 million later (raised by disability advocates), the 
bronze life-sized statue in a wheelchair was placed at the entrance to the 7.5 acre 
Roosevelt Memorial near the Potomac River. 

 

The Ticket to Work Incentive Improvement Act of 1999: The United States' New 
Employment Program 

By Lex Frieden, DisabilityWorld 6 (2001) 

. http://www.disabilityworld.org/01-02_01/employment/ticket.htm

 

The most recent initiative taken by the Social Security Administration in response to 
Congressional mandate is that of TWWIIA (the Ticket to Work Incentives Improvement 
Act of 1999)� In some respects, the TWWIIA program is similar to other back-to-work 
programs found in the U.S. and other countries. The program has a number of incentives 
that can be offered to benefit recipients to help them reintegrate into the work place. 


However, TWWIIA has one major incentive that, as far as I am aware, no other back-to-
work program has. That is, TWWIIA will pay the service provider agency, the job 
placement specialist, or the mentor a large portion of the funds which otherwise would 
have been paid in benefits had the individual not become employed. In other words, 
agencies which provide employment training and job placement to people with 
disabilities will receive a fixed portion of that person's prospective Social Security cash 
benefit when the subject individual goes back to work and in the first few years during 
the individual's employment. 

 

�Get Out the Vote� Efforts of the U.S. Disability Rights Movement: Interview with 
Judy Heumann, Assistant Secretary for Education 

By Kay Schriner, DisabilityWorld 6 (2001) 

. http://www.disabilityworld.org/01-02_01/gov/heumann.htm

 

This year's focus on �getting out the vote� is �a natural evolution� of the disability rights 
movement, said Judith E. Heumann, Assistant Secretary of the U.S. Department of 
Education, in an October 2000 interview. Three weeks before the 2000 presidential 
election, in an interview with DisabilityWorld e-magazine, Assistant Secretary Heumann 
said that candidates running for elected office have had a �consciousness� about 
disability issues since the 1992 election, but now, there is a new level of awareness about 
the disability vote. Fostering this awareness, said Assistant Secretary Heumann, is the 
�obvious next level� for the disability rights movement. Compared to the political 
strength of the African-American and Latino communities, the disability community is 
�the baby on the block�, according to Assistant Secretary Heumann. 

 

Former U.S. President Jimmy Carter Critiques Florida Election Practices 

By Kay Schriner, DisabilityWorld 6 (2001) 

. http://www.disabilityworld.org/01-02_01/gov/carter.htm

 

The United States is often looked to as a model of democracy by the rest of the world. 
But the 2000 presidential debacle has shed light on shoddy election practices. The events 
of this election have raised serious questions about the way U.S. states conduct elections. 
In Florida, the infamous events of this fall's presidential contest have exposed the 
underside of American democracy. Some legally cast votes were not counted because of 
mechanical glitches. The absentee ballots of some military personnel were not counted 
because of failure to comply with complex rules governing how they are mailed to 
election officials. African Americans have complained that they were systematically 
denied their right to participate in the election. Universal design experts have objected to 
the design of the 'butterfly ballot' because it is so difficult to use, and some disabled 
individuals have complained that they were kept from voting, or were treated unfairly by 
polling place workers. 

 


Wheelchair User Elected to U.S. Congress 

By Kay Schriner, DisabilityWorld 6 (2001) 

. http://www.disabilityworld.org/01-02_01/gov/langevin.htm

 

Jim Langevin, a new Congressman from the state of Rhode Island, uses a wheelchair. 
Langevin, who was 16 years old when he was accidentally shot by a police officer while 
participating in a cadet training program with the Warwick (R.I.) Police Department, has 
a long history of public service. Langevin first served in the Rhode Island legislature. 

 

New Freedom Initiative for People with Disabilities 

By U.S. President George Bush, DisabilityWorld 6 (2001) 

. http://www.disabilityworld.org/01-02_01/news/bush.htm

 

The story of America, it has often been said, is the story of the ever-widening circle of 
inclusion. Welcoming immigrants. Freeing slaves. Women winning the right to vote. 
Ending segregation. That circle was widened ten years ago, when Congress passed the 
Americans with Disabilities Act. Because of the ADA, discrimination against a person 
with a disability is not just unkind or cruel or wrong: It is an infringement of federal law, 
and a violation of civil rights. I am proud my father signed the Americans with 
Disabilities Act into law. 

 

But the banning of discrimination is just the beginning of full participation in our society. 
Though progress has been made in the last decade, too many barriers remain. Too many 
Americans with disabilities remain trapped in bureaucracies of dependence and are 
denied the tools and access necessary for success. My Administration is committed to 
tearing down these barriers. 

 

In that spirit, I am sending to Congress my �New Freedom Initiative��an important step 
forward in disability rights. These proposals will help ensure that all Americans with 
disabilities have the tools to use their skills, and make more of their own choices. The 
New Freedom Initiative will increase investment in and access to assistive technologies 
and a quality education, and help integrate Americans with disabilities into the workforce 
and into community life. 

 

Human Rights Group Calls for U.S. Ban on Executions of Individuals with 
Intellectual Disabilities 

By Kay Schriner, DisabilityWorld 7 (2001) 

. http://www.disabilityworld.org/03-04_01/gov/executions.shtml

 

Human Rights Watch, a respected watchdog group, has called on the United States to ban 
the executions of persons with intellectual disabilities. Noting that at least 35 people have 
been executed since the 1976 reinstatement of the death penalty, Human Rights Watch 
singled out the U.S. as being perhaps �the only constitutional democracy whose law 


expressly permits the execution of persons whose cognitive developments has been 
limited by mental retardation and that carries out such executions.� 

 

U.S. Federal Government Must Provide Accessible Information 

DisabilityWorld 8 (2001) 

. http://www.disabilityworld.org/05-06_01/access/accessibleinfo.shtml

 

After Thursday, rules for access to information become mandatory throughout the federal 
government. New information kiosks at national parks, for example, must have an 
alternate method of providing information�such as audio prompts�in addition to a 
touch screen; but most news of this change has focused on Internet access. Federal 
websites must be accessible to people who use screen readers and other alternate forms of 
using the Internet. June 21 is the day rules for ensuring compliance with Section 508 of 
the Rehabilitation Act and the WorkForce Investment Act of 1998 take effect (for an 
overview, go to http://www.accessiblesociety.org/topics/webaccess/index.htm ). The law 
applies to all Federal agencies when they develop, procure, maintain, or use electronic 
and information technology�so software manufacturers are starting to release accessible 
versions as well. 

 

National Voter Registration Act Implementation Survey 

Executive Summary, January, 2001 

Prepared by Kay Schriner, DisabilityWorld 8 (2001) 

. http://www.disabilityworld.org/05-06_01/gov/survey.shtml

 

Americans with disabilities are less likely to register and vote than nondisabled 
Americans. Several recent studies (e.g., National Organization on Disability, 1998; Schur 
& Kruse, 2000; Shields, Schriner, & Schriner, 1998) indicate that the registration rate 
among persons with disabilities is about 15 percentage points lower than among 
nondisabled citizens. And the voting rate is about 20 percentage points lower among 
individuals with disabilities. In recognizing that many individuals with disabilities (and 
other disadvantaged groups) are not registered to vote, and thus cannot participate in 
American elections, Congress passed the National Voter Registration Act in 1993 to 
make registration easier for citizens and to increase turnout in elections. 

 

International Pressure on U.S. to End Death Penalty for Disabled Persons 

By Kay Schriner, DisabilityWorld 9 (2001) 

. http://www.disabilityworld.org/07-08_01/news/deathpenalty.shtml

 

U.S. death penalty laws�especially those permitting the execution of persons with 
intellectual disabilities�are increasingly controversial, both in the U.S. and around the 
world. Many U.S. citizens believe that the death penalty is unfairly administered, 
resulting in disproportionate numbers of minorities on death row. And recent stories of 
death row inmates being exonerated by new DNA evidence has made it clear that at least 


of those waiting to die have been wrongly convicted. 

 

USA: Votes of Disabled People among �Epidemic of Disappearing Votes� 

By Kay Schriner, DisabilityWorld 10 (2001) 

. http://www.disabilityworld.org/09-10_01/gov/voting.shtml

 

Disabled voters faced many barriers during the election, according to the report. In at 
least 18 states, these voters found inaccessible polling places, confusing ballots, and a 
lack of privacy and independence in voting. Among the problems cited were: 

� A California voter with a disability required a portable ballot machine, but the only 
one available was a demonstration machine offering a choice between George 
Washington (the first U.S. President) and John Adams (the second President). 
� A disabled Ohio voter could find no accessible pathway to the polling place and had 
to have a ballot brought to him outside. 
� New York voters with disabilities reported widespread inaccessibility. One voter said 
that the polling place had a ramp, but that it was locked and unusable on election day. 


The spectacle of the 2000 presidential election has focused worldwide attention on the 
deficiencies of the American election machinery. The problems are not new; experts have 
known for years that about 2% of votes cast are routinely discarded for various reasons. 
But the closeness of the 2000 election and the long dispute about its outcome have raised 
the political stakes. 

 

Bush Administration Names Young Disability Advocate to Head Government Research 
Agency 

By Blair Anthony Robertson (reprinted by permission from the Sacramento Bee), 

DisabilityWorld 10 (2001) 

. http://www.disabilityworld.org/09-10_01/news/tingus.shtml

 

Steven Tingus, who was born with muscular dystrophy and spent much of his life 
overcoming obstacles, has received a presidential appointment as director for the 
National Institute on Disability and Rehabilitation Research, a unit within the U.S. 
Department of Education. Beginning Oct. 17 in Washington, D.C., Tingus will run an 
office of 45 civil servants that oversees research and pushes for new policies to promote 
inclusion and access for people with disabilities. He will also serve as chief adviser to 
Robert Pasternack, assistant secretary for special education and rehabilitative services. 

 

Copyright Law Pits Disability Access against Intellectual Property Rights 

By Judy Wilkinson, DisabilityWorld 11 (2001) 

. http://www.disabilityworld.org/11-12_01/access/copyright.shtml

 

As a result of writing a software program that allows Adobe Ebooks to be copied, 
Russian software programmer Dmitry Sklyarov was charged with violating the U.S.'s 
Digital Millenium Copyright Act of 1998. On December 12, 2001, charges were dropped 


in return for his agreement to cooperate with the U.S. government in its prosecution of 
his Russia-based employer Elcomsoft. The case has become a cause celebre pitting civil 
liberties advocates against proponents of an expanded definition of intellectual property 
rights under copyright law. The outcome of this case could have profound implications 
for the technology access rights for people with disabilities throughout the world. 

 

Bush Administration Issues Awaited Olmstead Report Outlining Policies to Advance 
Community-Based Programs 

By Jennifer Sheehy, DisabilityWorld 11 (2001) 

. http://www.disabilityworld.org/11-12_01/news/olmstead.shtml

 

On Friday, December 21, 2001, Health and Human Services (HHS) Secretary Tommy 
Thompson submitted to the President the first report of agency efforts to meet the 
Executive Order directive, entitled �Delivering on the Promise: Preliminary Report of 
Federal Agencies' Actions to Eliminate Barriers and Promote Community Integration.� It 
sets forth a summary of the actions that federal agencies propose to take in several key 
areas such as health care structure and financing, employment, housing and personal 
assistance. 

 

U.S. State Department Reports on Rights of Disabled People around the World 

By Kay Schriner, DisabilityWorld 12 (2002) 

. http://www.disabilityworld.org/01-03_02/news/report.shtml

 

Continuing its tradition of reporting on human rights conditions around the world, the 
U.S. State Department has just issued its latest country reports. As required by the 
Foreign Assistance Act and Trade Assistance Act, the reports will be used as �a resource 
for shaping policy, conducting diplomacy, and making assistance, training, and other 
resource allocations.� They will also �serve as a basis for the U.S. Government's 
cooperation with private groups to promote the observance of internationally recognized 
human rights.� To prepare the reports, U.S. embassies interview individuals and 
organizations in each of the countries. Once they have prepared the report drafts, they are 
sent to Washington for review and editing. The �guiding principle,� according to the 
State Department, is to ensure that the information is assessed for its objectivity, 
thoroughness, and fairness. The reports focus on a full range of human rights issues, 
including political rights, press freedoms, women's and worker's rights, and religious 
persecution. Section 5 of each country report focuses on discrimination based on race, 
gender, religion, disability, or social status. 

 

New Freedom Initiative: A Progress Report on Fulfilling America's Promise to 
Americans with Disabilities 

DisabilityWorld 13 (2002) 

. http://www.disabilityworld.org/04-05_02/employment/nfi.shtml

 


Many of the 54 million Americans with disabilities are deprived of their independence 
due to needless barriers. On February 1, 2001, President Bush announced his New 
Freedom Initiative to promote the full participation of people with disabilities in all areas 
of society by increasing access to assistive and universally designed technologies, 
expanding educational and employment opportunities, and promoting full access to 
community life. This report details the progress the Administration has made to 
implement the New Freedom Initiative goal�to ensure full integration of people with 
disabilities in American society. 

 

New Accessibility Guidelines Issued by the World Wide Web Consortium (W3C) 

DisabilityWorld 16 (2002) 

. http://www.disabilityworld.org/11-12_02/access/briefly.shtml

 

In December, the World Wide Web Consortium (W3C) issued guidelines for Web 
browsers and media players designed to maximize accessibility for users with disabilities. 
The User Agent Accessibility Guidelines 1.0 (UAAG 1.0) include suggestions for 
making commands executable via keyboard or mouse and ensuring that applications can 
be used easily with assistive technologies and are available in English, French and 
Japanese. 

 

Poll in U.S. Finds Strong Public Support for The Americans with Disabilities Act 

By Mark T. Richards, DisabilityWorld 19 (2003) 

. http://www.disabilityworld.org/06-08_03/gov/poll.shtml

 

The vast majority of Americans support the key elements of the Americans with 
Disabilities Act 13 years after its passage, a new Harris Poll study for the National 
Organization on Disability (NOD) finds. The findings are being released by NOD this 
week to demonstrate the high public support for the disability community's civil rights 
law as the nation celebrates the anniversary of the ADA's signing on July 26. 

. 

Boarding Buses and Getting a Job: Civil Rights Missing in Action 

By Marta Russell; reprinted from ZNet Magazine, DisabilityWorld 20 (2003) 

. http://www.disabilityworld.org/09-10_03/access/civilrights.shtml

 

Around the 13th anniversary of the signing of the Americans with Disabilities Act (July 
26, 1990) Anthony Trocchia, President of Disabled in Action in New York, found it 
necessary to hold a public bus hostage for an hour in 95 degree heat by sitting in front of 
it. This was the 7th bus that had passed Trocchia by without stopping on that particular 
day. The ADA requires public transportation systems to be accessible and in working 
order but New York city hall, like many municipalities across the nation, does not keep 
wheelchair lifts in working condition. What message does that convey? So what if 
Trocchia cannot get to work or any other destination. 

 


U.S. National Council on Disability Recommends Inclusive Foreign Policy 

DisabilityWorld 20 (2003) 

. http://www.disabilityworld.org/09-10_03/gov/ncd.shtml

 

More than 600 million people, almost 10 percent of the world's population, have a 
disability. This number will rise dramatically in the coming years as the population ages 
and as more people become disabled by AIDS. Rates of disability are particularly high in 
post-conflict societies, among refugee populations, and in countries with histories of 
political violence. Even in stable societies, however, people with disabilities make up the 
poorest of the poor. In some of the world's poorest countries, according to the United 
Nations (U.N.), up to 20 percent of the population has a disability. 

 

The United States is well positioned to lead the world in demonstrating how to build on 
the tremendous human potential of people with disabilities. It is among the world leaders 
in protecting the civil rights of people with disabilities, with legislation that seeks to 
ensure their full participation in society, and in supporting their independent living. The 
Americans with Disabilities Act (ADA) represents a sweeping commitment on the part of 
the U.S. government to abolish discrimination against people with disabilities in all walks 
of life. Since the adoption of the Rehabilitation Act in 1973, U.S. civil rights laws have 
required all U.S. government programs to be inclusive of and accessible to people with 
disabilities. As they have exercised their rights over the past 30 years, Americans with 
disabilities have broken barriers to inclusion, shattered stereotypes about their limitations, 
and contributed to the economic, cultural, and political life of the nation. 

 

U.S. Presidential Candidates Respond to Disability Questionnaire 

DisabilityWorld 21 (2003) 

. http://www.disabilityworld.org/11-12_03/news/democrats.shtml

 

AAPD sent letters with questions regarding issues important to people with disabilities to 
all nine Democratic primary candidates. In mid-2004, AAPD will look at the disability 
record and agenda of President Bush, the Democratic Party's nominee, and any other 
major candidates for President. Six of the nine candidates responded to our 
questionnaire�Wesley Clark, Howard Dean, John Edwards, Dick Gephardt, John Kerry, 
and Dennis Kucinich. For more disability information from Presidential candidates 
(including some who are not featured here) go to AAPD's web site at www.aapd-dc.org . 

 

New Freedom Initiative 2004 Progress Report 

DisabilityWorld 22 (2004) 

. http://www.disabilityworld.org/01-03_04/gov/progressreport.shtml

 

Announced in February 2001, the New Freedom Initiative is President George W. Bush's 
bold plan to tear down the remaining barriers to full integration into American life that 
many of this Nation's 54 million citizens with disabilities still face. This Progress Report 


highlights accomplishments under the New Freedom Initiative since the issuance of the 
May 2002 Progress Report. 

 

U.S. State Department's 2003 Human Rights Reports 

DisabilityWorld 22 (2004) 

. http://www.disabilityworld.org/01-03_04/resources/dosreports.shtml

 

On February 25, 2004, Secretary Powell held a special briefing to announce the release of 
the 2003 Human Rights Reports. The report entitled �Country Reports on Human Rights 
Practices� is submitted to the Congress by the Department of State in compliance with 
sections 116(d) and 502B(b) of the Foreign Assistance Act of 1961 (FAA), as amended, 
and section 504 of the Trade Act of 1974, as amended. The law provides that the 
Secretary of State shall transmit to the Speaker of the House of Representatives and the 
Committee on Foreign Relations of the Senate, by February 25 �a full and complete 
report regarding the status of internationally recognized human rights, within the meaning 
of subsection (A) in countries that receive assistance under this part, and (B) in all other 
foreign countries which are members of the United Nations and which are not otherwise 
the subject of a human rights report under this Act.� We have also included reports on 
several countries that do not fall into the categories established by these statutes and that 
thus are not covered by the congressional requirement. 

 

New Disability Point Person at the White House 

DisabilityWorld 23 (2004) 

. http://www.disabilityworld.org/04-05_04/news/justesen.shtml

 

Tracy R. Justesen recently joined the White House staff as Associate Director for the 
Domestic Policy Council. Tracy will handle the President's New Freedom Initiative and 
issues important to individuals with disabilities. He comes to the White House after 
serving as an Attorney in the Civil Rights Division of the Department of Justice. He 
served as a technical advisor to the President's Commission on Excellence in Special 
Education and as the President and Chief Executive Officer of one of the nation's premier 
centers for independent living. 

 

Employment Nondiscrimination Policies and Practices in the U.S. and U.K. 

By Susanne M. Bruy�re, Cornell University, DisabilityWorld 23 (2004) 

. http://www.disabilityworld.org/04-05_04/employment/nondiscrimination.shtml

 

People with disabilities are often greatly under or unemployed compared to their non-
disabled peers, despite the fact that approximately one person in six has a disability. This 
disparity is a function of inequity that has permeated social policy, access to education, 
training, and employment, as well as society's attitudes. To address this disparity, both 
the United States (U.S.) and the United Kingdom (U.K.) have passed disability non-
discrimination legislation within this decade. In the U.S., the Americans with Disabilities 


Act of 1990 (ADA) affords protections in employment, access to goods and services, and 
public accommodations. The Disability Discrimination Act 1995 (DDA) provides similar 
protections in the U.K. This research is based on the premise that the implementation of 
the employment provisions of these pieces of legislation falls largely in the realm of the 
functioning of human resource (HR) professionals. It is these professionals who are 
responsible for the recruitment, pre-employment screening, and other workplace practices 
that affect the hiring and retention of workers with and without disabilities. The purpose 
of this research has been to identify how HR professionals have responded to this 
legislation to date, and what further can be done to support their very critical role in 
minimizing workplace discrimination for people with disabilities. 

 

U.S. Department of Justice Launches Disability Rights Online News 

DisabilityWorld 24 (2004) 

. http://www.disabilityworld.org/06-08_04/gov/briefly.shtml

 

The U.S. Department of Justice recently launched an online monthly newsletter on 
disability rights. Issue #1 June 2004 includes information on a recent U.S. Supreme Court 
ruling on an individuals' right to challenge inaccessible courts, ADA mediation, a 
checklist for polling place accessibility and much more. 

 

Soldiers returning from Iraq and Afghanistan critique disability benefits system 

DisabilityWorld 24 (2004) 

. http://www.disabilityworld.org/06-08_04/gov/troops.shtml

 

The Associated Press recently reported that soldiers returning from Iraq and Afghanistan 
are finding that fewer than one in ten soldiers who become sick, injured or wounded 
receive the long-term disability payments they request. Additionally, up to one-third of 
injured National Guard and Reserve veterans returning from Iraq and Afghanistan must 
wait at least four months to find out if they will be compensated. The military's disability 
system, like workers' compensation and long-term disability in the private sector, only 
pays people benefits when they have illnesses and injuries that are job-related, therefore 
only evaluating ailments that make a soldier unfit for duty in his or her specialty. 
Although the Veterans Administration compensation system considers all service-related 
medical conditions, it is taking approximately 6 months days to make initial disability 
decisions, and recipients cannot benefit from both systems at the same time. 

 

President Signs Assistive Technology Act 

A Press Release from the Association of Assistive Technology Act (ATAP) Projects, 

DisabilityWorld 25 (2005) 

. http://www.disabilityworld.org/09-11_04/access/atact.shtml

 

President Bush yesterday signed the Assistive Technology Act of 2004, which will 
ensure that individuals with disabilities throughout the U.S. and its territories have access 


to the technology they need to help them be independent in school, at home, the 
workplace and in the community. This legislation represents an important commitment to 
people with disabilities from the President and the Congress. 

 

Analysis of Reauthorization of U.S. Individuals with Disabilities Education Act 

By The Disability Rights Education and Defense Fund, DisabilityWorld 26 (2005) 

. http://www.disabilityworld.org/12-02_05/gov/idea.shtml

 

IDEA was reported out of the conference committee on Wednesday, November 17, 2004. 
The House passed the conferenced bill with a vote of 397�3 on November 19, and the 
Senate agreed to it by unanimous consent on November 19. The IDEA has been re-
authorized. The bill we ended up with looks very much like the Senate bill, with a lot of 
refinements that occurred over the last months and weeks. DREDF will do a complete 
analysis of the law that is emerging and what it means for our families and supporters and 
children, as well as a post-mortem of the process, in the fullness of time. But we can say 
now that the voices of parents and advocates were heard loud and clear, that we DID 
make a difference in the outcome, and that, given the political and strategic 
circumstances and the situation on the Hill during this reauthorization process, our hard 
work and dedication paid off in getting our children the best possible bill we could get. Is 
it perfect or ideal? No. Is it fully funded? No. But we need to keep fighting and not be 
defeated by any sense of despair or failure. 

 

National Council on Disability seeks legislation to restore 'original intent' of the 
Americans with Disabilities Act 

DisabilityWorld 26 (2005) 

. http://www.disabilityworld.org/12-02_05/gov/briefs.shtml

 

An independent federal agency wants President Bush to propose changes in the nation's 
landmark disability act, citing Supreme Court decisions it says have reduced the status of 
disabled people �to that of second-class citizens.� The National Council on Disability, 
which advises Congress and the president, said in a report to be released tomorrow that 
legislation is needed to restore the original intent of the 1990 Americans with Disabilities 
Act. The council proposed an ADA Restoration Act, which it likened to the Civil Rights 
Restoration Act of 1987, passed by Congress to broaden the civil rights law enacted two 
decades earlier. 

 

AAPD leads drive to register disabled voters in the U.S. 

DisabilityWorld 26 (2005) 

. http://www.disabilityworld.org/12-02_05/gov/briefs.shtml

 

Throughout the U.S., organizations are registering new voters, arranging candidates' 
forums and working to make polling places accessible. Approximately 20 percent of the 
U.S. population is disabled, and Washington-based American Association of People with 


Disabilities is coordinating an effort to increase Election Day turnout by 1 million new 
disabled voters. Disabled citizens are15 percent less likely to vote, according to a 1999 
Bureau of Economic Research study, and 14 years after the Americans with Disabilities 
Act, many polling places and ballots remain inaccessible. Many visually impaired voters 
have never been able to vote in secret. Mobility impaired voters face flights of steps and 
inaccessible voting booths. In a 2001, a Government Accountability Office survey of 
more than 500 U.S. polling places during the 2000 general election found only 16 percent 
were completely accessible. 

 

 


* This article originally appeared in DisabilityWorld 9 (2001), 
http://www.disabilityworld.org/07-08_01/gov/brereton.shtml

 
New Zealand's First Disabled 
Human Rights Commissioner: 
an interview with Ross Brereton *

 

By Robyn Hunt, conducted in 2001 

 

 

 

 

 

 

 

Ross Brereton has been a disability advocate for many years, the last six of them have 
been spent as New Zealand's first disabled Human Rights Commissioner. Recently 
retired, he gave the following interview about his views on the national and international 
disability scene. 

 

His appointment had particular significance for disabled people as it came with the 
inclusion of disability in New Zealand's Human Rights law after years of lobbying and 
advocacy. 

 

�I was not appointed as a disability commissioner but I made it my role. It was known 
within the commission. I was the first commissioner who identified as having a disability 
coming from the sector with a passion for the job.� 

 

Ross saw this identification as a disabled person as very important. �My experience as a 
commissioner with a disability shows that the disability issues were highlighted, and seen 
as a priority, and that there is some trust and credibility within the sector to work with a 
commissioner with an innate feel for the issue.� 

 

IMPORTANCE OF INTERNATIONAL CONVENTIONS 

 

�At the International level disability still doesn't rate as a priority in the work of human 
rights institutions. Economic social civil and political rights are more prominent,� he 
said. 


 

On the U.N. convention on the rights of disabled people he said, �There is nothing formal 
yet from the U.N.. The seed has been sown by the international disability community. 
Given the strength of the community it will probably take five or ten years to get it.� 

 

�Those conventions are very important,� he cited as an example the U.N. Convention on 
the Rights of the Child. In 1993 it resulted in the setting up of the office of the 
Commissioner for Children (in New Zealand.) �Resources were given to researching and 
resolving children's issues. When conventions are signed and ratified they are committed 
to implementation, and special committees of the U.N. monitor them. New Zealand was 
criticized for our Crimes Act for the inclusion of 'reasonable force' provisions. Because of 
the convention the issue there is greater political will to change.� 

 

HUMAN RIGHTS ISSUES IN NZ AND AUSTRALIA 

 

�Disabled people in New Zealand are protected by the Human Rights Act, but that is only 
anti-discrimination law�a convention binds the government to strategically promote the 
protection of human rights and issues that create barriers for that group.� 

 

Ross describes NZ disability Human Rights as �on a par with Australia, although they 
have an extra section in their act giving teeth�standards which gave legal requirement 
for their commission to be involved in developing standards for delivery in education, 
transport telecommunication and employment. In New Zealand the commission does not 
have such a clear mandate.� 

 

One human rights issue that has been pursued for several years is a telecommunication 
relay system for Deaf people. �Australia pushed ahead. We have not yet got a relay�the 
last discussion was a breakthrough in terms of service provider commitment we now 
have. We should look forward to a positive outcome for telecommunications services for 
the deaf community.� Ross said that research was necessary to convince Telecom of the 
need. 

 

�The awareness of Human Rights (for disabled people) has markedly increased. This can 
be measured through enquiries and complaints. Disability is the largest group of 
complaints. Employment is the largest at 50%, then education, goods and services and 
accommodation. 

 

�We have achieved progress through training people with disabilities and inter agency 
connections. Alliances with the sector have been built, particularly at crisis times, when 
changes to the act were proposed, and over government compliance issues. At the end of 
1998 the proposed permanent exemptions for government from the Human Rights Act 
was overturned. The disability community had a strong voice. 

 


PROMOTING ATTITUDE CHANGE 

 

�Attitudes still have to be changed, but they are changing. The most proactive way to 
change them is for disabled people to participate in jobs and recreation, and decision 
making in everyday life�change through disabled people.� 

 

Ross made the point that disabled people and their organisations should use the existing 
avenues for change. �They can approach the commission and use the resources and 
powers, for example investigations. The commission has the power to work across 
agencies on issues in a proactive way, for example community housing. The commission 
was involved in changing district plans over housing. The commission can report to 
government on these issues and brief the Minister of Disability issues. 

 

�Having a minister of the Crown responsible for disability issues is significant. No future 
government could not have one. 

 

�The recognition that disabled people are a significant part of NZ society�20%�is now 
well understood. Statistics matter. They can trigger policy change. That breakthrough in 
1996 came about because of the disability sector. Any future New Zealand census will 
include that measure.� 

 

Ross believes that the proposed �one stop shop human rights institution is a good idea as 
long as the major vulnerable groups are recognized within the commission structure. I 
believe that the restructuring of the commission should include a disability 
commissioner�25% of complaints relate to disability, so there is much work to do.'� 

 

OTHER INTERNATIONAL ISSUES TO ADDRESS 

 

There are still things to be done. For example, Ross believes ILO Convention 159 offers 
an opportunity to pursue vocational outcomes. �The disability sector does not know about 
it or use it in terms of promotion of vocational rights. New Zealand has not ratified it yet. 
It should be one of the things to be done. Ratified conventions are measured and 
legislation follows ratification.� 

 

International contacts are important. �Bringing to New Zealand international people like 
Patrisha Wright (DREDF) known for their international advocacy on civil and human 
rights issues means the disability sector can identify and promote issues through them.� 

 

Ross also acknowledged the work of disabled people, whose advocacy during the 1980's 
contributed to achieving the inclusion of disability in the Human Rights Act. 

 

Ross will continue to be involved in Human Rights and in the disability community in 
making a difference. 


 


 Selected Articles and Reports 
Published in DisabilityWorld 2000�2005: 
ASIA PACIFIC 

 

The following lists selected news articles and reports from Asia and the Pacific, 
published in DisabilityWorld (www.disabilityworld.org) 2000�2005, 
documenting the rise of activities pertaining to 
disability and good governance in that region. 

 

 

 

AFGHANISTAN 

 

Disability and Governance in Afghanistan 

By Majid Turmusani, DisabilityWorld 25 (2005) 

. http://www.disabilityworld.org/09-11_04/gov/afghanistan.shtml

 

Traditional debates on governance focused mainly on the state and the improvement of 
its institutional capacity (Campbell, 2000; Kingston, 2002). The concept of 'governance' 
is often presented as involving the use of political authority and exercise of control in a 
society in relation to the management of its resources for development (World Bank, 
1992; 1997). This is a classical view of governance and encompasses the role of public 
authorities in regulating the relationship between the ruler and the ruled. Good 
governance however, implies a process by which people take an active and influential 
part in shaping decisions that affect their lives (Schmitter, 1997). Governance is being 
understood here to involve other actors including civil society organizations in making 
and implementation of decisions, or in this discussion, the involvement of disability civil 
society organizations. 

 

 

AUSTRALIA 

 

Australia Amends Human Rights Legislation 

DisabilityWorld 1 (2000) 

. http://www.disabilityworld.org/March2000/English/Briefly1legis.htm

 


In late September 99 the Australian parliament passed an amendment bill to its Human 
Rights legislation, providing for a simplified process for making complaints and for 
procedures to have fees waived based on financial hardship. 

 

Australia Forges New Plan for Accessibility of Transport 

DisabilityWorld 5 (2000) 

. http://www.disabilityworld.org/10-12_00/access/briefly.htm

 

Under a new agreement between the transport industry and the disability sector, the 
transport industry will be obliged to meet access targets for disabled passengers within 5 
years, Australia's Minister for Family and Community Services, Senator Joyce Newman, 
announced on October 19. The Government has announced that within five years the 
response time for taxis must be the same for disabled and non-disabled passengers. In 
addition, 25% of buses must be accessible within 5 years, 55% within 10 years, 80% 
within 15 years and 100% within 20 years. These requirements and others are outlined in 
the new Disability Standards for Public Transport. 

 

Australian Government Challenged for Supporting Employment Discrimination 

DisabilityWorld 11 (2001) 

. http://www.disabilityworld.org/11-12_01/employment/briefly.shtml

 

In October the Australian National Council on Intellectual Disability (NCID) filed a 
complaint with the Human Rights and Equal Opportunity Commission, calling to account 
the Commonwealth for supporting disability discrimination in employment. Representing 
employees with intellectual disability, NCID is requesting an investigation of the 
Commonwealth's funding of 263 organizations that employ people with disabilities. 
NCID is charging that the vast majority of these organizations provide employment terms 
and conditions that are less favorable than those conditions enjoyed by the general 
workforce. For example, many funded organizations pay wages that are below the federal 
award safety net enjoyed by others in the Australian workplace. 

 

�Ministers, Actions Speak Louder Than Words!� Say Australians with Intellectual 
Disability and their Families 

By Paul Cain, DisabilityWorld 12 (2002) 

. http://www.disabilityworld.org/01-03_02/gov/actions.shtml

 

March 1, 2002, Melbourne Commonwealth, State and Territory Disability Ministers met 
today in Melbourne to continue negotiations for the 3rd Commonwealth State Disability 
Agreement. The Communiqu� issued by the Meeting of Disability and Community 
Services Ministers fails to set out concrete actions to address the crisis of unmet need that 
thousands of people with disabilities and their families confront. People with disabilities 
and families, who are in urgent need of support in their daily lives, have been left 
frustrated and angry without any positive progress from today's negotiations. 


 

National Disability Standards for Accessible Public Transport Enacted in Australia 

DisabilityWorld 16 (2002) 

. http://www.disabilityworld.org/11-12_02/gov/briefly.shtml

 

National Disability Standards for Accessible Public Transport went into effect on 
October 23, 2002 in Australia and require access to new public structures, pedestrian 
facilities, and transport vehicles as well as provide a timetable for making existing 
facilities and vehicles accessible. The new standards include detailed requirements 
regarding access paths, ramps and boarding devices, allocation of spaces on buses and 
trains, handrails, doorways, controls, symbols and signs, fares, providing information, 
etc. The standards are available online at http://www.law.gov.au?DSFAPT/Welcome.html. 

 

 

BANGLADESH 

 

Bangladesh Parliament Adopts First Comprehensive Disability Legislation 

DisabilityWorld 8 (2001) 

. http://www.disabilityworld.org/05-06_01/gov/bangladesh.shtml

 

Bill introduced to protect and safeguard the rights and dignity of the Persons with 
Disability, ensure their participation in the national and social programmes and their 
general welfare; and for matters connected therewith or incidental thereto: 

 

Whereas it is expedient and necessary to enact laws to protect and safeguard the rights 
and dignity of the persons with disability, ensure their participation in the national and 
social programmes and their general welfare; and for that matters connected therewith or 
incidental thereto. 

 

Electoral Participation of Citizens with Disabilities in Bangladesh: May�October 2001 

The following article is drawn from the Political Access for People with Disabilities: 
Briefing Paper Series, Volume II, paper 2, June 2001, DisabilityWorld 9 (2001) 

. http://www.disabilityworld.org/07-08_01/gov/bangladesh.shtml

 

The International Foundation for Election Systems (IFES) has begun an effort in 
Bangladesh to promote greater participation by citizens with disabilities in national 
elections to be held in the Fall of 2001. The core of this effort will be a program to 
recruit, train, and deploy approximately 300 citizens with disabilities to serve as domestic 
election observers. Approximately 100 citizens with disabilities will be deployed in 
Dhaka, and approximately fifty (50) each in the districts of Bogra, Kushtia, Magura, and 
Natore. 


 

Disabled people appointed to Bangladesh Government 

From the Disability Tribune (Dec. 2003/Jan. 2004), a publication of Disability Awareness 
in Action, DisabilityWorld 26 (2005) 

. http://www.disabilityworld.org/12-02_05/gov/briefs.shtml

 

Disabled people in Bangladesh welcomed the appointment of four disabled men to the 
Social Services Directorate. Persons with disabilities in Bangladesh are hopeful that this 
milestone event will send a clear message that disabled people are valuable members of 
their communities and that they have the right to contribute to policy development and 
the decision making process. 

 

 

CHINA 

 

New York Times Writer Detoured by Curiosity about How Chinese Leader Became 
Disabled 

By Barbara Duncan, DisabilityWorld 4 (2000) 

. http://www.disabilityworld.org/Aug-Sept2000/Media/Writer.htm

 

A September 18 leading article in the New York Times by Celestine Bohlen was headed, 
�China Troupe Overcomes, as Did Man Behind it.� What follows is a fascinating in-
depth article that ostensibly covers the just concluded six city U.S. tour of the China 
Disabled People's Performing Arts Troupe. The article can be read at 
www.nytimes.com/2000/09/18/arts/18DENG.html 

 

 

INDIA 

 

Initiatives of the Government of India to Advance Asia & Pacific Decade of Disabled 
Persons 

By Anuradha Mohit, DisabilityWorld 2 (2000) 

. http://www.disabilityworld.org/April-May2000/Governance/India.htm

 

Until the recent past there was no comprehensive law for persons with disabilities. The 
first attempt was made in July, 1980 when a Working Group was set up. A draft 
legislation known as �Disabled Persons (Security & Rehabilitation) Bill, 1981 was 
prepared. As we well know, 1981 was also International Year of Disabled Persons. In the 
year 1987�88 a Committee was constituted under the Chairmanship of Member of 
Parliament Shri Bharul Islam who was the former Judge of Supreme Court. The 
Committee submitted its report in June 1988 and it made wide-ranging recommendations 
concerning the various aspects of rehabilitation, e.g.,prevention, early intervention, 


education, training, employment etc. These recommendations, however, could not be 
enacted into a law. 

 

India to Include Disability Questions in 2001 Census 

DisabilityWorld 5 (2000) 

. http://www.disabilityworld.org/10-12_00/gov/briefly.htm

 

India's Commissioner of the National Population Census announced in October a 
decision to include a question to elicit information on the disability status of citizens. The 
Census, to be carried out in February 2001, will be the first in India to cover disability 
since the census of 1981. 

 

India: Disability Advocates Win the Right to be Counted 

By National Centre for Promotion of Employment for Disabled People (reprinted with 
permission), DisabilityWorld 6 (2001) 

. http://www.disabilityworld.org/01-02_01/news/census.htm

 

We have statistics for almost anything, from the animals to rare species to vegetarians 
and non-vegetarians, etc., etc. India boasts of being one of the few countries that conducts 
Census religiously every ten years. The irony is that in spite of this machinery in place, 
we do not have authentic statistics on the population of disabled people in our country. 
The official figure for the disabled population of India is 1.9% (Source: NSSO Survey 
1991)! If we compare it with percentage of people with disabilities in other Asian 
Countries�China 5%, Pakistan 4.9%, Philippines 4.4%, Nepal 5.0%�we can either pat 
our backs for literally having eradicated disability out of India or we can pinch ourselves 
in order to wake up and face the real truth. 

 

Indian Court Orders Schools to Accommodate Disabled Children 

By Kay Schriner, DisabilityWorld 13 (2002) 

. http://www.disabilityworld.org/04-05_02/children/india.shtml

 

The Delhi state high court has ordered New Delhi city officials to take steps to ensure 
that disabled children are educated in the city's schools. Before the April 30 ruling, the 
court had accepted the city's contention that it was moving forward with plans to increase 
the number of teachers serving kids with disabilities. But in the new ruling, the court 
cited the city for its failure to implement the plan. 

 

Indian State Government Sets Disability Quotas in Top Posts 

By Kay Schriner, DisabilityWorld 15 (2002) 

. http://www.disabilityworld.org/09-10_02/gov/india.shtml

 

Karnataka State in India will set aside 3% of the top-level government jobs for persons 
with physical disabilities. Another state, Rajasthan, took a similar step earlier. The higher 


ranking posts now available to disabled persons include positions in universities, the tax 
department, and the judiciary. So far, 47 jobs have been identified as appropriate for the 
set-aside. The Persons with Disabilities Act of 1996 requires that every state establish a 
percentage of jobs that will be reserved for individuals with physical disabilities in every 
level of government. 

 

Indian Group Files Lawsuit to Force Implementation of Disability Law 

By Kay Schriner, DisabilityWorld 18 (2003) 

. http://www.disabilityworld.org/04-05_03/gov/india.shtml

 

In an ironic move, the high court of Bombay, India has ordered that a temporary ramp be 
constructed to permit petitioners to enter the building for arguments in their lawsuit to 
force implementation of the People with Disabilities Act (PDA). The Spastic Society of 
India has filed the public interest lawsuit, which asks the high court to intervene. 

 

Towards a National Policy for Indians with Disabilities 

DisabilityWorld 26 (2005) 

. http://www.disabilityworld.org/12-02_05/gov/briefs.shtml

 

Union Minister for Social Justice and Empowerment Meira Kumar today said the 
government would soon bring out a national policy for the disabled to look into their 
needs and grievances. Speaking at a function of the National Commission for Women to 
mark the �International Day of Disable Persons,� the Minister invited input from the 
NCW to help formulate the policy. 

 

 

INDONESIA 

 

Indonesian President Wahid: Puppet or Skilled Politician? 

By Kay Schriner, DisabilityWorld 4 (2000) 

. http://www.disabilityworld.org/Aug-Sept2000/Media/Indonesia.htm

 

Abdurrahman Wahid, who is disabled, was elected as Indonesia's fourth president last 
October. In an unexpected victory, Wahid defeated the popular Magawati Sukarnoputri to 
take his place as leader of the fourth-largest nation in the world. But who is Wahid? Is he 
a severely disabled man who may be easily manipulated? Or is he a skilled politician who 
adroitly negotiated with numerous political factions to win the election? 

 

 

JAPAN 

 

Japan Reviews Laws Barring Disabled Persons from Various Professions 

DisabilityWorld 5 (2000) 


. http://www.disabilityworld.org/10-12_00/gov/briefly.htm

 

Last year the Government of Japan began a review of 63 laws and regulations barring 
disabled persons from obtaining licenses in a variety of professions. The purpose of the 
review is to abolish or revise these strictures. Current laws designate people with hearing, 
vision, speech and mental disabilities as barred from obtaining medical licenses, 
regardless of the degree of severity of disability. 

 

Transit Access in Japan Finally on the Fast Track 

By Marc Krizack, DisabilityWorld 3 (2000) 

. http://www.disabilityworld.org/June-July2000/Governance/Transit.htm

 

Following the passage of Japan's new transit access law, international transit authorities 
are gearing up to share their expertise in accessible transit with their Japanese colleagues. 
On May 10, the Japanese parliament passed the Barrier-Free Transportation Law. The 
law requires that all new transit vehicles, stations, and roads be accessible to people with 
disabilities and the elderly. All new stations and other facilities must include elevators 
and escalators, where necessary, and tactile guideways for those with visual impairments. 
The law provides for civil penalties if transit operators are found to be out of compliance. 
It will go into effect in November 2000. 

 

Better Employment Prospects for Disabled Japanese? 

By Masako Okuhira; reprinted from �Normalization� April 2001, DisabilityWorld 8 (2001) 

. http://www.disabilityworld.org/05-06_01/employment/japan.shtml

 

On 6th January 2001, the Ministry of Health and Welfare and Ministry of Labour were 
united to become the Ministry of Health, Labour and Welfare, as a result of the 
Government's reorganization. Originally, the two ministries had been one until 1947, just 
after the end of World War II. What is the government's intention in reuniting them? The 
Law on Establishment of Ministry of Health, Labour and Welfare published last July 
states as follows: �The Ministry of Health, Labour and Welfare is responsible for 
improving social welfare, security and public health, maintaining the working 
environments and conditions, and securing jobs, in order to guarantee and raise the 
standard of living and to contribute to economic development.� 

 

Japan: The Importance of Analyzing the Intent and Impact of Our Discriminatory 
Laws while Eradicating Them, or, �Straightening Out the True Nature of the Issue� 

By Mr. Ryo Matsutomo, Managing Director, Inclusion Japan. Updated from an article 
originally published in Normalization, December 1999, DisabilityWorld 8 (2001) 

. http://www.disabilityworld.org/05-06_01/gov/japan.shtml

 

The review of �Disqualifying Clauses for Disabilities� is about to be put in place. Now 
that the Government Task Force for the Promotion of Measures for Disabled Persons lay 


the course and draft amendments of many laws were submitted to the Diet, it seems to be 
a matter of time. As we have been engaged in this issue for a long time, we cannot help 
but reveal our joy on the verge of the fulfillment of our wishes. However, we still have 
something that we are not satisfied with. When the draft amendments drawn up by the 
Task Force were discussed at the Central Council for the Promotion of Measures for 
Disabled Persons (hereinafter referred to as �the Council�), persons with disabilities 
themselves were in universal agreement to point out an underlying problem and 
consequently a document named �opinion in writing� was attached under the name of 
chairperson and head of the planning and coordination division. Our dissatisfaction is in 
common with this opinion. Although the draft prepared by the secretariat (the Ministry of 
Public Management, Home Affairs, Posts and Telecommunications) was given a certain 
appreciation in the discussion at the Council, it provoked a strong backlash among 
persons with disabilities because the draft amendments did not include the fundamental 
statement: �All the disqualification clauses shall be abolished in principle.� And I shared 
completely the same view with them. Persons with disabilities criticized the lack of 
serious reflection on the historical aims of the disqualification clauses and their own 
consequent sufferings, as seen in the following phrase, �...to examine whether the 
disqualification clauses are truly necessary or not...� included in the draft with a number 
of reasons such as the advancement of science & technology. The draft was based on 
self-justification on the part of the authorities with the notion that the disqualification 
clauses �once had their own meaning but should be reviewed with the change of the 
times.� 

 

Leprosy Court Case Shakes Japan 

By Kay Schriner, DisabilityWorld 8 (2001) 

. http://www.disabilityworld.org/05-06_01/il/leprosy.shtml

 

Japanese society has been rocked by the claims of former leprosy patients that they were 
kept institutionalized and enslaved long after medical science had developed treatments 
that would allow them to live in the community. Hundreds of people with leprosy�also 
called Hansen's disease�have filed lawsuits against the Japanese government alleging 
that their isolation violated their human rights. People with Hansen's Disease were 
required by the 1953 Leprosy Prevention Law to be isolated for treatment and many were 
sterilized or made to have abortions. While at the centers, the patients were required to 
work, and the labor often exacerbated their conditions. There are still more than 4500 
people living in 15 special centers across Japan. 

 

Disability Activist Loses Race for Parliament Seat 

By Kay Schriner, DisabilityWorld 9 (2001) 

. http://www.disabilityworld.org/07-08_01/gov/higuchi.shtml

 

Disability rights activist Keiko Higuchi ran up against political apathy and a media overly 
enamored with celebrity candidates in her unsuccessful bid for a seat in the Japanese 


Diet, and now is taking some time �to recover from the tough campaigning,� according to 
campaign aid, Osamu Nagase. Campaigning on issues important to people with 
disabilities such as integration and inclusion, Higuchi found herself contending with a 
political climate in which a celebrity-obsessed media controls the way a candidate is 
presented to the public. To make matters worse, Higuchi had to battle widespread 
indifference to people with disabilities and the issues that matter most to them. 
Campaigns in Japan occur during an intense two-week period in the heat of the summer, 
and crowds seemed to gather only for the most well-known candidates. 

 

New Law Introduces Use of Assistance Dogs in Japan 

By the Japanese Society for Rehabilitation of Persons with Disabilities, DisabilityWorld 10 (2001) 

. http://www.disabilityworld.org/09-10_01/il/dogs.shtml

 

In Japan, assistance dogs are still treated as ordinary pets. In 1995, the first service or 
assistance dog was trained and as of April 2001, there are 15 organizations that train 
assistance dogs, and 19 dogs are actually working. In the Diet there is a movement to 
enact legislation entitled the �Bill for Promoting Assistance Dogs� and many proposals 
have been presented. For example, to make a new law to guarantee the social access of 
assistance dogs, such as accompanying their users on public transportation; to add a 
clause on assistance dogs in the present laws such as the Social Welfare Assistants Law 
and the Law for the Welfare of the Physically Disabled Persons; or to make a new 
comprehensive law on welfare like Americans with Disabilities Act (ADA) in the USA, 
which includes assistance dogs and guide dogs for the blind and deaf. 

 

Japanese with Hansen's Disease Welcome Closure 

By the Japanese Society for Rehabilitation of Persons with Disabilities, DisabilityWorld 10 (2001) 

. http://www.disabilityworld.org/09-10_01/gov/hansens.shtml

 

In July 1998, 13 patients filed a lawsuit against the state at a district court in Kumamoto, 
while 12 did the same in Tokyo in March 1999, and 11 in Okayama in September the 
same year. They sought monetary compensation for damages caused by the Leprosy 
Prevention Law that took effect in 1907 and was revised in 1953. The law, which was 
abolished in April 1996, required that people with the condition be isolated. After a long 
painful struggle, on May 11, 2001, the plaintiffs won the suit at the Kumamoto District 
Court. On May 21, 923 former patients filed additional suits at the above three district 
courts. As a result, the total number of the plaintiffs increased to 1702. On May 23, the 
government abandoned plans to appeal the ruling, effectively recognizing the justice of 
the plaintiffs' cause. 

 

�Two Decades� for People with Disabilities: Achievements, Future Tasks and 
Recommendations for Government's Policies in Japan 

By Kenji Itayama, Vice President of Japanese Society for Rehabilitation of Persons with 
Disabilities, DisabilityWorld 14 (2002) 


. http://www.disabilityworld.org/06-08_02/il/2decades.shtml

 

For the last ten years, the Japanese government has strived to realize �full participation 
and equalization of persons with disabilities� and the results are quite successful. In terms 
of legislation and governmental policies, there has been an increasing improvement 
brought about by the establishment of the Disabled Persons' Fundamental Law, which 
�examines� conditions restrictive to disabled people, revises the laws on people with 
disabilities and promotes barrier free opportunities in areas as architecture, transportation 
and communication. A problem exists in Japan, whereby laws related to people with 
disabilities do not state �rights� and �duties� in detail and lack in legal and executive 
force (unlike the Americans with Disabilities Act). This is underlined by the fact that 
there are still inadequate municipal plans for persons with disabilities to improve their 
welfare or opportunities in education and employment. 

 

Japan: Step by Step towards Disability Anti-Discrimination Law 

By Shuhei Ohta, Japan Council on Disability; reprinted from Normalization, June 2004, 

DisabilityWorld 25 (2005) 

. http://www.disabilityworld.org/09-11_04/gov/japan.shtml

 

The amendment bill for The Basic Law for Persons with Disabilities was at last passed by 
the Diet in May. This bill includes �anti-discrimination provisions, �stating, �Nobody 
shall discriminate (against) persons with disabilities or perform other discriminating acts 
to violate their rights and benefits, because of their disabilities,� which is the most 
remarkable feature. However, since no penalty is stipulated, its legal effectiveness and 
binding force are quite weak. 

 

Although JD (Japan Council on Disability) has been asserting to amend The Basic Law 
for Persons with Disabilities, there have been many twists and turns before it is finally 
realized. Lots of disabled persons' organizations including JD, demand the establishment 
of Anti-Discrimination for Persons with Disabilities. This is because they are aware that 
they need a legally binding law, which they can use during a trial, when the problem of 
�discrimination� actually occurs. Therefore, there has been a deep-rooted concern among 
some of the self-advocacy groups that with this amendment to The Basic Law, 
establishment of the new Anti-Discrimination Law may be delayed or even abolished. 

 

 

KOREA 

 

Koreans Losing Disability Claims against Japanese Government 

By Kay Schriner, DisabilityWorld 8 (2001) 

. http://www.disabilityworld.org/05-06_01/gov/koreans.shtml

 

The claims of two groups of Koreans for compensation and pensions from the Japanese 


government were recently denied by Japanese courts. One group includes South Korean 
women known as �comfort women� who were held as sex slaves for Japanese soldiers 
during World War II. The women joined with Korean men who were soldiers or military 
workers to demand compensation. Some of the women have physical disabilities as a 
result of their enslavement. 

 

 

NEPAL 

 

Supreme Court decides on free education for disabled people in Nepal 

From the Disability Tribune (Dec. 2003/Jan. 2004), a publication of Disability Awareness 
in Action, DisabilityWorld 26 (2005) 

. http://www.disabilityworld.org/12-02_05/gov/briefs.shtml

 

The Nepalese Supreme Court recently ordered the government to provide free education 
to all disabled people throughout the country. The Supreme Court also directed the 
Ministry of Education and Sports, The Education Department, The Higher Education 
Department, The Special Education Council, The Tribhuwan University, The Purbanchal 
University and the Kathmandu University to Provide Free education for disabled people. 
The Nepal Disabled Human Rights Center, which has been lobbying for access to free 
education for disabled people, will continue to keep up the pressure on the government 
and the various agencies, on NGOs, INGOs, U.N. Agencies, Human Rights 
Organizations, and the general public to ensure the full implementation of this landmark 
Supreme Court decision. 

 

 

NEW ZEALAND 

 

New Zealand Newswire 

By Robyn Hunt, DisabilityWorld 2 (2000) 

. http://www.disabilityworld.org/April-May2000/Governance/NZNewswire.htm

 

Disabled woman Attorney General 

One of the highest-ranking appointments made by the incoming government was the new 
Attorney-General. First-time Member of Parliament Margaret Wilson is an amputee. 
Although not a disability activist�she is better known as a women's activist�she is not 
unsympathetic to disability issues. She is also Minister of Labor, and will be involved in 
human rights issues. 

 

Disability data to be collected 

The incoming Labour government has decided that the next census will again include 
questions on disability. This overturned an earlier decision by the previous government. 
In 1996, after a long struggle on the part of the disability sector, questions on disability 


were included in the national census, and information from that and the follow-up survey 
provided the first quality information on disability in New Zealand on a national basis. 

 

New Government introduces new Legislation and reviews 

This year looks like being a busy one for activists, with a number of changes and 
developments taking place. The New Zealand Standard for Access NZS4121 is currently 
being reviewed, with a Public Draft for Comment expected this spring. The standard has 
a unique place in the NZ building control system. It bridges the gap between the legal 
human rights and anti-discrimination legislation and the new NZ building code regulation 

 

The incoming government has also promised a review of the Disabled Persons 
Employment Promotions Act, a now controversial piece of legislation introduced during 
the 1960's. Under the DPEP Act sheltered workshops were established with exemptions 
from much of the workplace law and regulations governing the rights of workers. This 
legislation is problematic, as it is inconsistent with the Human Rights Act 1993, which 
includes people with disability. 

 

Intellectual Disability 

The Intellectual Disability Compulsory Care Bill is another piece of legislation currently 
before the House. This legislation has caused much concern in the disability community 
as it is seen to be a threat to the human rights of a small group of people perceived to be a 
danger to themselves or others. The danger is more a perception than a reality in the eyes 
of many, who consider there is already adequate provision under existing laws to deal 
with any difficulties. 

 

Another important review just announced is a review of Special Education 2000, 
education policies which have become increasingly controversial as parents have 
struggled with complex processes and resourcing inequities. 

 

Standard for Access Review: Wider Coverage of Physical Access is to be Included in 
New Zealand's New Access Standard 

By Robyn Hunt, DisabilityWorld 3 (2000) 

. http://www.disabilityworld.org/June-July2000/access/NewZealand.html

 

NZS 4121; 2000�the Standard Code of Practice for Access and Mobility includes 
provision for the needs of vision and hearing impaired people as well as those with 
physical disability. It has new sections on outdoor spaces, and accessible accommodation 
and housing. The earlier standard NZS 4121 1985 emphasized access to public buildings 
and facilities and was unclear about domestic provisions. The new draft covers areas 
outside the Building Act, such as those covered by Territorial Authorities. New Fire rules 
described by disability activists as 'terrible' and 'intrusive' will have far-reaching 
consequences for around 70,000 New Zealanders who live with disability, their landlords 
and insurers. 


 

Advisory Group to Work with New Zealand Government on Disability Strategy 

DisabilityWorld 3 (2000) 

. http://www.disabilityworld.org/June-July2000/Governance/NewZealand.html

 

The appointment of a reference group to the New Zealand Disability Strategy will 
ensure people with disabilities and other stakeholders are actively involved in developing 
the strategy, Minister for Disability Issues Ruth Dyson said on May 24. Ms Dyson is 
delighted with the high level of interest in the strategy, which will be a blueprint for 
future disability policy and services. 

 

Universal Benefit Mooted in New Zealand 

By Robyn Hunt, DisabilityWorld 4 (2000) 

. http://www.disabilityworld.org/Aug-Sept2000/Governance/NewZealand.htm

 

The New Zealand government is working towards a single benefit for everyone on 
welfare, except superannuitants. All beneficiaries except superannuitants would receive 
the same benefit. They would then have the ability to 'top up' by undertaking training, 
voluntary work or study. There would also be 'top ups' for personal circumstances, such 
as dependent children or disability. 

 

New Zealand Launches New Access Standard: More than Ramps & Big Toilets 

DisabilityWorld 7 (2001) 

. http://www.disabilityworld.org/03-04_01/access/nzaccess.shtml

 

�NZ has come a long way in the 34 years since access meant the kerb-cut, the ramp, the 
big toilet and the access symbol,� said Bill Wrightson, building consultant at the launch 
of the revised access Standard at Parliament� Now it�s cooking in motels, tactile ground 
surface indicators and places for guide-dogs to... run. Next time round it will be the audio 
environment� I am pleased that this will also be the most accessible document 
Standards New Zealand has produced,� he added. 

 

Service Charter 'Disappointing' 

By Robin Hunt, DisabilityWorld 7 (2001) 

. http://www.disabilityworld.org/03-04_01/gov/disappointing.shtml

 

New Zealand's national disability advocacy organisation has expressed disappointment 
with a new service charter launched by the country's largest government social service 
department. Chief Executive Gary Williams said that DPA's submission, which raised 
accessibility issues, was disregarded. 'My reading of the charter indicates that disability 
issues won't be addressed. The charter is trying to be simplistic and easy to understand 
and doesn't go into much detail. It is a flaw which could be exploited by the Department,' 
he said. 


 

New Human Rights Law for New Zealand 

By Robyn Hunt, DisabilityWorld 8 (2001) 

. http://www.disabilityworld.org/05-06_01/gov/nz.shtml

 

New Human Rights legislation will be introduced in New Zealand later this year. 
Associate Justice Minister Margaret Wilson has announced that the Government has 
decided in principle that the Bill of Rights Act will be used as the anti-discrimination 
standard for the government. The areas of employment law and related issues, such as 
sexual harassment, will continue to be covered by the Human Rights Act. The new 
legislation will cover the government's obligations under anti-discrimination laws. 
Currently, the Government is exempt from the provisions of the Human Rights Act, 
which outlaws discrimination on a variety of grounds, including disability and age. This 
exemption is due to expire at the end of this year. 

 

Disability Strategy Launched 

By Robyn Hunt, DisabilityWorld 8 (2001) 

. http://www.disabilityworld.org/05-06_01/gov/nzstrategy.shtml

 

New Zealand's Prime Minister, the Rt. Hon. Helen Clarke, launched the first Disability 
Strategy�Making a World of Difference Whakanui Oranga, in early May. The Disability 
Strategy presents for the first time in a government policy document, a new approach to 
disability. This approach says that people have impairments; it is barriers existing in the 
social and physical environment that cause disability. The biggest barrier presenting the 
biggest challenge is attitude. 

 

Disabled Experts Strengthen Building Authority 

By Robyn Hunt, DisabilityWorld 9 (2001) 

. http://www.disabilityworld.org/07-08_01/access/newzealand.shtml

 

Two of New Zealand's best-known disabled access experts have been appointed to the 
New Zealand Building Industry Authority. The Building Industry Authority administers 
the building control system in New Zealand through the Building Act. The NZS4121, 
design for access and mobility�buildings and associated facilities, is the only standard 
cited in the Act. Other important functions of the Authority with particular significance 
for disabled people include appointing building certifiers, educating the industry about 
the Building Act, and making determinations about compliance with the building control 
system. 

 

Human Rights Decision Raises Issues for Families 

By Robyn Hunt, DisabilityWorld 9 (2001) 

. http://www.disabilityworld.org/07-08_01/gov/nzhr.shtml

 


A New Zealand Human Rights Complaints Review Tribunal decision Has established the 
rights of parents to be considered as paid caregivers of their adult intellectually disabled 
sons and daughters. A couple had formally applied for the position of caregivers of their 
adult intellectually disabled son who lives semi-independently in the community. They 
were refused the position because they were the man's parents. They subsequently took 
the case to the Human Rights Commission, claiming discrimination on the grounds of 
family status. They won their case against IHC, the national service provider for people 
with intellectual disabilities. The decision acknowledged their right to be considered as 
caregivers for their son. 

 

NZ Government Action on Disability Strategy 

By Robyn Hunt, DisabilityWorld 9 (2001) 

. http://www.disabilityworld.org/07-08_01/gov/nz.shtml

 

Eleven key government agencies have released their plans as a first step in the 
implementation of the NZ Government Disability Strategy. The 11 government agencies 
which have drawn up implementation plans for 2001/2002 are the Department of Labour, 
Ministry of Education, Ministry of Health, Department of Work and Income, Ministry of 
Social Policy, Ministry of Justice, State Services Commission, Te Puni Kokiri, Ministry 
of Pacific Island Affairs, Ministry of Women's Affairs and Ministry of Transport. 

 

 

THE PHILIPPINES 

 

The Philippines Disability Rights Movement Goes to Court 

By Michelle Favis, DisabilityWorld 13 (2002) 

. http://www.disabilityworld.org/04-05_02/access/philippines.shtml

 

One of the biggest barriers to disability rights enforcement in the Philippines is the court 
system. The Philippines' courts have never even heard a disability rights case. But 
advocate Manuel Batac aims to change that. Batac, chair of the Accessibility Task Force 
Building Inspection of the Caloocan Development Committee for Persons with 
Disability, is testing the strength of the court's commitment to disability rights. He has 
filed cases with the Department of Justice against a group of restaurants located in 
Caloocan City, for violations of the Accessibility Law and the Magna Carta for Disabled 
Persons. Both pieces of law call on public establishments to provide appropriate access 
features for persons with disabilities. These are the first cases ever filed in the Philippines 
against an establishment for noncompliance with the country's disability rights 
legislation. Mr. Batac, with the support of the National Council on the Welfare of 
Disabled Persons (NCWDP), has worked to get the cases accepted by the Philippines 
government for over a year. 

 


New Philippine Governor Upsets Dynasty 

DisabilityWorld 26 (2005) 

. http://www.disabilityworld.org/12-02_05/gov/briefs.shtml

 

Grace Padaca, a 40-year-old woman who uses crutches as a result of childhood polio, was 
elected governor of Isabela province in May, upsetting Gov. Faustino Dy Jr., the third 
successive member of the powerful Dy family to run the province over the last 35 years. 
Padaca, who had championed the causes of the poor for 14 years as a local radio 
commentator, campaigned day and night in poor villages throughout Isabela with a few 
volunteers. The power of the Dy family made many supporters afraid to be seen with her 
in public, fearing they could lose their jobs, and the Catholic Church deployed about 
3,000 parishioners to help guard the ballot boxes, fearing widespread vote fraud by the 
Dys. 

 

 

THAILAND 

 

Thailand Court Upholds Ban on Disabled Judges 

By Kay Schriner, DisabilityWorld 13 (2002) 

. http://www.disabilityworld.org/04-05_02/gov/thailand.shtml

 

Dashing the hopes of two disabled lawyers to become judges in Thailand's judiciary, the 
country's constitutional court has ruled that a law prohibiting persons with disabilities 
from serving as judges does not violate the constitution. Sirimit Boonmul and Boonjuti 
Klubprasert had applied to become judges in 1999, but their application was denied. The 
lawyers had hoped that the court would find the prohibition a violation of the 
constitution's guarantee against unfair treatment on the basis of disability. 

 

Disabled Thais Call for End to Discrimination 

DisabilityWorld 26 (2005) 

. http://www.disabilityworld.org/12-02_05/gov/thailand.shtml

 

Disabled people lit candles outside the parliament Sunday evening to call on political 
parties to push through with legislation to end discrimination. Led by Mr. Monthian 
Buntan, President of the Thailand Association of the Blind, around 50 people with a 
range of disabilities stood outside the parliament building in a bid to ensure that all 
political parties treated the disabled with fairness and respect. 

 


 

 


 

 
Selected Articles and Reports 
Published in DisabilityWorld 2000�2005: 
INTERNATIONAL 

 

The following lists selected news articles and reports, published in DisabilityWorld 
(www.disabilityworld.org) 2000�2005, documenting the rise of activities pertaining 
to the U.N. Convention on the Rights of Persons with Disabilities 
as well as disability and good governance from a global perspective. 

 

 

 

INTERNATIONAL REPORTS AND INITIATIVES 

 

Global Survey of the Political Process & People with Disabilities 

DisabilityWorld 1 (2000) 

. http://www.disabilityworld.org/March2000/English/Briefly1legis.htm

 

The International Foundation for Election Systems, based in Washington, will survey 
laws, decisions and practices of people with disabilities in the political process. With 
funding from the Ministry of Foreign Affairs of Finland, the IFES project will identify 
ways to support increased voter registration, candidacies, party leadership and public 
appointments for disabled persons.IFES will also organize election observation studies 
that evaluate access to registration, information, campaigns and candidacies, the ballot 
and appeals mechanisms. 

 

Challenges in the Comparative Study of Disability Politics 

By Kay Schriner, DisabilityWorld 6 (2001) 

. http://www.disabilityworld.org/01-02_01/gov/challenge.htm

 

People with disabilities hold elected and appointed offices in many nations around the 
world. Disabled people are members of parliaments and high-level officials in executive 
branches. They use these positions to influence policy and work hard to improve the 
quality of life for other disabled people. The roles they play in their governments, the 
issues they work on, and the impact they have in their countries is of great interest. The 
increasing consciousness about disability issues internationally suggests that we need to 
develop a thorough understanding of the status of disabled people in the political 
structures of their countries. We need to understand how these various nations govern 


themselves, and how disabled people can gain and wield influence. To do this, we need to 
know about the country's history and traditions, and how to compare those circumstances 
across countries. This analysis must reflect an appreciation of cultural, economic, and 
political practices. This background is necessary to develop the comparative study of 
disability politics. 

 

Moving legislation into action: the examples of India & South Africa 

By Lucy Wong-Hernandez, Executive Director, Disabled Peoples International; reprinted 
with permission from Disability International, magazine of DPI, DisabilityWorld 6 (2001) 

. http://www.disabilityworld.org/01-02_01/gov/legislation.htm

 

Many countries have developed new policies to be more inclusive and create a society 
where people with disabilities are taken into consideration like all other citizens. Often 
this social development in the area of social policy has all good intentions, however it 
may lack a true commitment by governments and the financial resources to make the 
necessary changes and implement new legislation polices. In examining two countries, 
India and South Africa, where efforts in favor of persons with disabilities have been 
made on the governments' part due to the lobbying and advocacy work of organizations 
of persons with disabilities; I found a great disparity in commitment, implementation and 
the knowledge that disabled people have about their own national legislation and 
disability policies. 

 

Disability Rights Legislation 

By Laurel Richards, DisabilityWorld 8 (2001) 

. http://www.disabilityworld.org/05-06_01/gov/legislation.shtml

 

At the start of the 21st century, three countries have passed significant disability rights 
legislation into law�Australia in 1993, the United Kingdom in 1995, and the United 
States in 1990. A fourth, New Zealand, has recently completed the planning process on 
which such legislation would be developed. In each, the right of people with disabilities 
to obtain and maintain employment is given prominent attention. This is formal 
recognition of the contributions employed disabled people can and do make to their 
countries as workers and as tax payers. 

 

Children with Disabilities: Global Priorities 

By Rehabilitation International, DisabilityWorld 9 (2001) 

. http://www.disabilityworld.org/07-08_01/children/global.shtml

 

In preparation for the U.N. Special Session on Children, RI has reviewed current 
statistics, literature and international policy statements, and consulted with specialists in 
childhood disability. The following findings from these materials are sobering and 
underscore the urgency of raising the inclusion of children and youths with disabilities to 
a high priority in all proposed actions and programs to implement the Convention on the 


Rights of the Child. 

 

Inclusion International Issues Statement for U.N. Special Session on Children 

DisabilityWorld 9 (2001) 

. http://www.disabilityworld.org/07-08_01/children/unsession.shtml

 

The United Nations General Assembly Special Session on Children will be an 
opportunity to review our progress in protecting the rights of children since the World 
Summit on Children in 1990. For children who have a disability, the review is important 
both in terms of monitoring progress under the articles of the Convention but also 
because it offers an opportunity to evolve our understanding of human rights. 

 

It is time to establish inclusion as a human rights objective, so that every article under the 
Convention is read with a view to the inclusion of children who have a disability and 
others who are marginalized. Inclusion is both a concept and a practise that extends 
beyond the notion of integration. It is the very vehicle by which the human rights of 
people with disabilities and others who are marginalized are attained. Inclusion allows for 
children with disabilities to have equal access to regular education, to be welcomed and 
valued in the community in which they live, and to grow and develop alongside their 
brothers and sisters. Perhaps even more importantly, it is time that we understand the 
human rights of all children as more than protection from abuse. A proactive approach to 
the human rights of all children requires strategies which build the social, economic and 
political conditions which decrease the incidence of child poverty, political conflict and 
social exclusion. 

 

The Treaty for a Genetic Commons 

DisabilityWorld 9 (2001) 

. http://www.disabilityworld.org/07-08_01/news/commons.shtml

 

This article is in four parts: a statement of support of the Treaty for a Genetic Commons 
and a response to the statement, followed by a draft of the Treaty and a letter seeking 
support for the Treaty. 

 

New International Website on Making Democracy Accessible 

By Kay Schriner, DisabilityWorld 10 (2002) 

. http://www.disabilityworld.org/09-10_02/gov/electionaccess.shtml

 

The International Foundation of Elections Sytems, a Washington-based group which 
provides technical assistance and training to democracies around the world, announces a 
new website dedicated to making democracy accessible to people with disabilities. 

 


International Conference Explores Accessible Democracy & Adopts �Bill of Electoral 
Rights for Persons with Disabilities� 

By Richard A. Soudriette, President, International Foundation for Election Systems, 

DisabilityWorld 16 (2002) 

. http://www.disabilityworld.org/11-12_02/gov/ifes.shtml

 

The work of democracy is not complete until the universal right to vote, and to participate 
on full and equal terms in the electoral process, is extended to all individuals with 
physical, sensory, intellectual, and psychiatric disabilities. Over four days from 
September 14�17, 2002, disability rights experts and activists, senior election 
administration officials, and international parliamentarians from 24 nations met in 
Sigtuna, Sweden to draft and advance a global �Bill of Electoral Rights for Persons with 
Disabilities.� This new �Bill of Electoral Rights� defines and promotes the universal right 
of people with disabilities in relation to all aspects of the electoral process, and the state's 
obligation to make this right a reality. 

 

Researcher Uses Knowledge to Fight Hate: An Interview with Mark Sherry 

By Laura Hershey, DisabilityWorld 19 (2003) 

. http://www.disabilityworld.org/06-08_03/gov/sherry.shtml

 

Mark Sherry recently finished his tenure as the Ed Roberts Post-Doctoral Fellow at the 
University of California at Berkeley's Disability Studies program. During his fellowship, 
Sherry continued his research into a disturbing but important topic�violence against 
disabled people�work he had begun at Australia�s University of Queensland. 

 

Prestigious Awards for Three International Disability Leaders 

By Barbara Duncan, DisabilityWorld 21 (2003) 

. http://www.disabilityworld.org/11-12_03/news/awards.shtml

 

In December prestigious awards were given to three people who have dedicated 
themselves to improving the situation of disabled people worldwide. Deng Pufang, 
president of the China Disabled Persons Federation (CDPF), was one of the winners of 
this year's United Nations prizes in the field of human rights; Dr. Susan Daniels of the 
U.S., deputy vice president of Rehabilitation International, has just been selected to 
receive the Henry B. Betts award for her long time national and international advocacy; 
and Lord Ashley, president of Britain's Royal National Institute for the Deaf, was given a 
lifetime achievement award in recognition of his contributions to U.K. legislation 
impacting disabled people. 

 

 


U.N. CONVENTION ON THE RIGHTS OF PERSONS WITH DISABILITIES 

 

Idea of Convention Proposed to U.N. Human Rights Commission, Geneva 

By Bengt Lindqvist; excerpts from the statement presented to the 56th Session of the 
U.N. Commission on Human Rights in Geneva, DisabilityWorld 2 (2000) 

. http://www.disabilityworld.org/April-May2000/IntntalNews/IntnatlDevelop2.htm

 

�Variations in physical, mental and sensory functioning have always existed among 
human beings. Yet, people with functional limitations�disabilities�have always run the 
risk of being excluded and marginalized. Throughout the centuries we have designed and 
constructed our societies, as if persons with disabilities did not exist, as if all human 
beings can see, hear, walk about, understand and react quickly and adequately to signals 
from the world around them. This illusion, this misconception about human nature, this 
inability to take the needs of all citizens into account in the development of society, is the 
main reason for the isolation and exclusion of persons with disabilities, which we can 
observe in different forms and to different degrees all over the world. It will take a long 
time to change this pattern of behaviour, which is deeply rooted in prejudice, fear, shame 
and lack of understanding of what it really means to live with a disability. However, the 
international efforts to improve the living conditions for persons with disabilities have 
started and progress is being made.� 

 

Mobilizing to Promote a United Nations Convention on the Rights of People with 
Disabilities 

DisabilityWorld 3 (2000) 

. http://www.disabilityworld.org/June-July2000/International/UNIntro.html

 

Rehabilitation International analyzes the existing international human rights instruments 
and recent deliberations about the impact of these instruments and non-binding 
instruments such as the U.N. Standard Rules. The article makes a strong case for creating 
a new convention and will serve as the background paper for a special seminar on this 
topic during the RI World Congress in Rio de Janeiro, August 25�29. 

 

�Resolution Regarding an International Convention on the Rights of People with 
Disabilities,� adopted 8 July 2000 by the U.S. National Federation of the Blind, notes the 
current opposition of the U.S. State Department to the concept of such a convention and 
calls upon the White House, the Congress and the State Department not only to support 
it, but to �take leadership in marshalling broad international backing for such a 
convention.� 

 


The Third Attempt at an International Convention on Disability 

By Nagase Osamu, Institute on Disability & Communication, DisabilityWorld 4 (2000) 

. http://www.disabilityworld.org/Aug-Sept2000/International/Japan.htm

 

Currently there are moves to propose a convention on the rights of disabled persons at the 
United Nations. At the international level, a convention on disability was first proposed at 
the �Global Meeting of Experts to Review the Implementation of the World Programme 
of Action Concerning Disabled Persons at the Mid-Point of the United Nations Decade of 
Disabled Persons�, Stockholm 17�22 August 1987. This meeting was historic. It was the 
first U.N expert meeting in which the majority of experts were disabled people. And the 
meeting recommended an international convention on the elimination of all forms of 
discrimination against disabled persons. 

 

U.N. and Disability Rights: Urgent Request for Action 

DisabilityWorld 10 (2001) 

. http://www.disabilityworld.org/09-10_01/news/alert.shtml

 

All of us involved with the defense and promotion of the human rights of people with 
disabilities are fully aware of the momentous importance that would have the approval, 
from the United Nations, of an International Convention that protects such rights. This is 
a dream that has been forged within the International Community, since the end of the 
70's. Twenty five years later we have a valuable instrument (the U.N. Standard Rules), 
but insufficient to improve, with effectiveness, the situation of human rights of more than 
600 million people that today represent the population with disabilities in the planet. The 
Inter-American Institute on Disabilities (IID), joining in support of all efforts being made 
by the international organizations representing people with disabilities, puts all its energy 
to the service of the cause of the U.N. Convention. 

 

U.S. National Council on Disability Calls for U.N. Disability Rights Convention 

Resolution of the National Council on Disability on the Development of a U.N. 
Convention on the Rights of People with Disabilities, DisabilityWorld 10 (2001) 

. http://www.disabilityworld.org/09-10_01/news/ncd.shtml

 

� Be it resolved that the National Council on Disability (NCD) declares its support for 
the development of an International Convention on the Rights of People with Disabilities, 
and 

 

Be it further resolved that the NCD calls on the President, Congress and the Department 
of State to use the United States� position of influence and leadership to promote on an 
international scale the principles of inclusion and reasonable accommodation for people 
with disabilities that it strives to implement for its own citizens. 

 


International Disability Alliance Focuses on Proposed U.N. Convention 

By Mike Ervin, DisabilityWorld 12 (2002) 

. http://www.disabilityworld.org/01-03_02/news/ida.shtml

 

On February 18, members of the Mexican delegation to the United Nations presented to 
members of the International Disability Alliance (IDA) their plans to win fast-track 
approval of a first ever U.N. Convention on the Rights of Disabled People. But the 
incoming chairperson of IDA, Kicki Nordstrom of Sweden, expressed concern the 
approach entailed risks that might ultimately backfire or result in a weak Convention. 

 

June 2002: U.S. Forum on Developing a U.N. Convention on the Rights of People with 
Disabilities 

DisabilityWorld 13 (2002) 

. http://www.disabilityworld.org/04-05_02/news/usicd.shtml

 

People from countries around the world have begun working together to create a United 
Nations Convention on the Rights of Persons with Disabilities. Grassroots disability 
organizations within the United States are now being invited into this process. On June 
12, 2002, an educational and strategic forum will be held in Washington, DC, to inform 
the leaders of American grassroots disability groups about international human rights 
tools and their relationship to U.S. disability legislation, including the Americans with 
Disabilities Act, and to outline opportunities these groups have to support active and 
positive U.S. participation in the convention-development process. 

 

International Disability Alliance Adopts Resolution of Consensus on Critical Elements 
related to Treaty on Rights of Persons with Disabilities 

The following short statement was issued by the International Disability Alliance 
(Disabled Peoples' International, Inclusion International, Rehabilitation International, 
World Blind Union, World Federation of the Deaf, World Federation of Deafblind, 
World Network of Users and Survivors of Psychiatry) during the U.N. Ad Hoc Meeting 
concerning the proposed U.N. Disability Rights Convention, held in late July and early 
August 2002 in New York. DisabilityWorld 14 (2002) 

. http://www.disabilityworld.org/06-08_02/news/ida.shtml

 

The International Disability Alliance (IDA) offers the following resolution outlining 
critical points pertaining to the development of a treaty on the rights of persons with 
disabilities. This document does not claim to be an exhaustive examination of all issues 
that should be addressed in a treaty. However, it represents a consensus of IDA members 
regarding many important elements related to both the development process and ultimate 
substance of a treaty. 

 

The objective of an international convention on the rights of persons with disabilities is to 
elaborate enforceable standards and implementation procedures that enable persons with 


disabilities to exercise the human rights and fundamental freedoms to which all human 
beings are entitled. Grounded in the primary human right to live and to exist freely, a 
convention must embody the values of equality, liberty, independence, dignity, self-
determination, social solidarity, personal autonomy, and non-discrimination. Standards 
inferior to those contained in any other human rights treaty, including general and 
specialized treaties, must not be accepted. The authority of a convention must be clearly 
established so that it has recognized precedence over other U.N. instruments pertaining to 
disability that were developed earlier and may have outdated or conflicting concepts or 
weaker provisions. 

 

Draft resolution on Ad Hoc Committee adopted unanimously 

DisabilityWorld 16 (2002) 

. http://www.disabilityworld.org/11-12_02/news/genassembly.shtml

 

On Friday, 22 November 2002, the Third Committee of the General Assembly considered 
the report of the first session of the Ad Hoc Committee and adopted the draft resolution, 
contained therein, on its future work, which included a decision to hold the second 
session of the Ad Hoc Committee from 16�27 June 2003 at United Nations Headquarters 
(New York). 

 

By a resolution approved this afternoon unanimously by the Third Committee (Social, 
Humanitarian, Cultural), the General Assembly would decide that the Ad Hoc Committee 
considering a Comprehensive and Integral International Convention to Promote and 
Protect the Rights and Dignity of Persons with Disabilities would hold its second 
meeting, within existing resources, from 16�27 June 2003, at United Nations 
Headquarters. 

 

Interview: Luis Gallegos of Ecuador, Chairman of U.N. Ad Hoc Committee on an 
International Convention on the Rights of People with Disabilities 

By Leonor Coello, DisabilityWorld 17 (2003) 

. http://www.disabilityworld.org/01-03_03/news/adhoc.shtml

 

On October 8, 2002 at the Permanent Mission of Ecuador I had the great pleasure of 
interviewing the Ambassador of Ecuador, Luis Gallegos, who is also serving as Chairman 
of the Ad Hoc Committee on an International Convention on the Rights and Dignity of 
Persons with Disabilities, which met for the first time in New York in July and August of 
2002. As an Ecuadorian and a disability activist, I was honored and proud to have had the 
opportunity to conduct this interview and I thank the Ambassador and his staff for 
adhering to it. As you will learn from the interview, Ambassador Gallegos is very much 
committed to protecting the rights of people with disabilities in Ecuador and worldwide. 

 

A U.N. Convention on the Rights of Persons with Disabilities: The Next Steps 

By Arthur O'Reilly, Past President, Rehabilitation International, DisabilityWorld 17 (2003) 


. http://www.disabilityworld.org/01-03_03/news/unconvention.shtml

 

In July 1999, as President of Rehabilitation International (RI), I participated in a meeting 
in the Royal Palace in Amman, Jordan. The purpose of the meeting was to discuss what 
should be the main goal in RI's proposed new Charter. There were five other people, plus 
a small number of observers, at the meeting. The five included three people from the 
Arab Region: Dr Essa El Sadi, RI Vice President for the Region, HRH Prince Ra'ad Bin 
Zeid of Jordan, who had kindly invited the group to meet in Amman, and a representative 
of Prince Sultan Ben Salman Abdul Aziz Al Saud of Saudi Arabia. At the meeting it was 
suggested that it was time to try again to get the United Nations to adopt a Convention on 
the Rights of Persons with Disabilities. There was unanimous agreement that RI should, 
in its Charter for the Third Millennium, call on the nations of the world to support this 
proposal. 

 

Towards a U.N. Disability Convention: Input from Rehabilitation International to the 
Second Ad Hoc Meeting 

DisabilityWorld 18 (2003) 

. http://www.disabilityworld.org/04-05_03/news/unconvention.shtml

 

The primary goal for the second ad hoc meting should be to achieve a clear 
recommendation by the ad hoc meeting to the General Assembly that there should be a 
Convention. All kinds of texts opening the door to other alternatives should be resisted. 
Many resolutions and interventions at the first ad hoc meeting make reference to 600 
million people with disabilities in the world. We need to know who those people are and 
what are their living conditions. In addition it is time to verify the accuracy of the 10% 
estimation. Most industrialized countries estimate the proportion of their population who 
has a disability to be between 12�20 %. Developing countries on the other hand mostly 
report 2�5%. Many people consider the figures from developing countries to be 
underestimations. 

 

Towards a U.N. Disability Convention: Statement by the International Disability 
Alliance (IDA) for 2nd Committee Session, June 2003 

DisabilityWorld 18 (2003) 

. http://www.disabilityworld.org/04-05_03/news/unconvention2.shtml

 

Following extensive consultation with our members representing more than 600 million 
people in the world with a disability the IDA strongly recommends that the U.N. adopt a 
convention to protect the human rights of people with disabilities. In that respect IDA 
recommends that the Ad Hoc Committee establish a task force composed of experts in 
the field to develop a draft text for the convention. This draft shall recognize disability as 
a part of human diversity rather than as a medical problem. While IDA acknowledges the 
World Program of Action and the Standard Rules as important milestones in recognizing 
the right of disabled persons, we assert that a convention should be a comprehensive 


Human Rights Treaty, which goes beyond existing instruments in order to manifest the 
paradigm shift from disability as a social welfare/medical issue to disability as a human 
rights issue. 

 

Potholes and Bridges along the Road to a U.N. Disability Rights Convention 

By Mike Ervin, DisabilityWorld 19 (2003) 

. http://www.disabilityworld.org/06-08_03/un/potholes.shtml

 

Marta Russell and Roseangela Berman-Bieler observed the intricacies of the second 
meeting of the Ad Hoc Committee on a Comprehensive and Integral International 
Convention on Protection and Promotion of the Rights and Dignity of Persons with 
Disabilities from different vantage points. Russell, who represented the American 
Association of People with Disabilities, is a radio and print journalist from Los Angeles 
and author of �Beyond Ramps: Disability at the End of the Social Contract� (Common 
Courage Press, 1998). She's a radical thinker and sharp writer who has extensively 
analyzed American and global disability politics, but this was her first chance to see the 
U.N. process at work first hand. Because Berman-Bieler, has been directly involved in 
the international disability rights movement for two decades, as founder of the 
Independent Living Center of Rio de Janeiro and then as president of the Inter-American 
Institute on Disability, she's all too familiar with how the U.N. works. At the ad hoc 
committee meeting she represented the World Bank, where she now consults on how to 
make accessibility �a natural component� of development projects. 

 

Human Rights Institutions from 20 Countries Cite Support for Disability Rights 

By Robyn Hunt, DisabilityWorld 19 (2003) 

. http://www.disabilityworld.org/06-08_03/un/support.shtml

 

Representatives of national human rights institutions from 20 countries in the Asia 
Pacific region and from the British Commonwealth unanimously supported the 
development of a U.N. human rights�based Convention on the rights of disabled people 
during a meeting in Delhi. It is one more positive strand in the growing momentum 
around the world as support grows for a convention. The concluding statement from the 
workshop was presented at the meeting of the ad hoc committee of the U.N. in New York 
during June. 

 

Chair of U.S. National Disability Council Calls U.N. Press Conference 

DisabilityWorld 19 (2003) 

. http://www.disabilityworld.org/06-08_03/un/unconvention.shtml

 

Lex Frieden, chairperson of the United States National Council on Disability, told 
correspondents at an U.N. Headquarters press conference in June that the proposed U.N. 
convention on the human rights of people with disabilities should not be enacted without 
the involvement and approval of people with disabilities. If it were, such a convention 


would serve neither the people it aimed at nor fulfill its intended goals. 

 

Towards a United Nations legally binding instrument to promote and protect the rights 
and dignity of persons with disabilities 

Communication from the Commission to the Council and the European Parliament, 

DisabilityWorld 19 (2003) 

. http://www.disabilityworld.org/06-08_03/un/eu.shtml

 

The purpose of this Communication is to set out the European Commission's support for 
a United Nations (U.N.) legally binding instrument to protect and promote the rights and 
dignity of persons with disabilities, and to explain why an active participation of the 
European Community in the development of such an instrument is indispensable. 
Discussions have started to take place in the framework of a U.N. Ad Hoc Committee set 
up by U.N. Resolution 56/168 to �consider proposals for a comprehensive and integral 
international convention to protect and promote the rights and dignity of persons with 
disabilities�. 

 

Towards a Gender-Sensitive Disability Rights Convention 

DisabilityWorld 19 (2003) 

. http://www.disabilityworld.org/06-08_03/un/gender.shtml

 

On June 24 in New York City, approximately 35 participants in the U.N. second Ad Hoc 
meeting on disability met to discuss ways to integrate gender sensitive areas of concern 
into a disability rights convention. Participants represented a number of disability and 
human rights nongovernmental and semi-governmental entities, from the following 
countries: Brazil, Canada, Costa Rica, Finland, Germany, Ireland, India, Korea, Mexico, 
New Zealand, Peru, South Africa, Sweden, Uganda, and USA. The group agreed that it 
was necessary that disabled women and girls be explicitly mentioned in the forthcoming 
Convention, as they have been invisible for too long in the existing human rights treaties 
and other human rights initiatives. In particular, the group noted, disabled women's right 
to self determination is frequently violated. 

 

Ireland and the Proposed U.N. Disability Treaty�The Need to Restore Lost 
Leadership 

By Gerard Quinn, DisabilityWorld 19 (2003) 

. http://www.disabilityworld.org/06-08_03/un/ireland.shtml

 

It was recently reported in The Irish Times (Monday April 7th) that the Department of 
Justice is opposed to Irish participation in the drafting of a new treaty on the rights of 
persons with disabilities and is furthermore impeding the emergence of a strong EU 
common position. A further piece in Thursday's edition (10th April) seems to indicate a 
slight relaxation of this opposition. Yesterday's column by Fintan O'Toole (April 14th) 
challenges the moral authority and political wisdom behind this opposition. A formal 


hearing on the proposed treaty is due to take place in the Sub-Committee on Human 
Rights of the Joint Committee on Foreign Affairs in the Oireachtas on Thursday, 24th 
April at 10.00 am. Let there be no doubt, opposition to this treaty drafting process would 
not only be a great shame for Ireland but also a tragedy for the developing world. All the 
more so since Ireland was one of the leading proponents of such a treaty until recently. 

 

U.S. National Council on Disability Statement to the Oireachtas Joint Committee on 
Foreign Affairs; Sub-Committee on Human Rights 

DisabilityWorld 19 (2003) 

. http://www.disabilityworld.org/06-08_03/un/ncd.shtml

 

The National Council on Disability would like to thank the Human Rights Sub-
Committee for the opportunity to address this important hearing. To begin, NCD would 
like to recognize Ireland's leadership in the global movement for the human rights of 
people with disabilities. We applaud your tireless efforts over the past decade to move the 
U.N. human rights machinery closer, one step at a time, to recognizing disability as a 
human rights issue. Although the establishment of an Ad Hoc Committee to begin work 
on an international convention was the result of a specific initiative by Mexico, it is 
recognized by the disability community that Ireland's vision and persistence helped pave 
the way for the convention initiative. NCD commends the Irish government for your 
historical leadership on this issue, believing that the recent progress toward a convention 
would likely have been much more challenged without it. 

 

Agenda 22�Putting Teeth in the Standard Rules 

By Michele Morgan, DisabilityWorld 19 (2003) 

. http://www.disabilityworld.org/06-08_03/gov/standards.shtml

 

With the Second Ad Hoc Meeting on a United Nations (U.N.) Disability Convention 
approaching in June 2003, disability and human rights are hot topics. The convention 
process though is likely to be a slow one and a legal agreement on the rights of people 
with disabilities may not come to fruition for several years. In the meantime, Agenda 22, 
a practical policy implementation tool that can help U.N. member countries create 
policies and programs that take into consideration the human rights of people with 
disabilities, is gaining credence and popularity in many European countries. 

 

The idea behind Agenda 22 grew from the 1993 adoption by the U.N. General Assembly 
of the Standard Rules on the Equalization of Opportunities of Persons with Disabilities, a 
political and moral guideline that aims to secure the rights of all persons with disabilities 
to the same opportunities as other citizens. 

 

Disabled women demand inclusion in U.N. Convention 

By Robyn Hunt, DisabilityWorld 20 (2003) 

. http://www.disabilityworld.org/09-10_03/women/unconvention.shtml


 

Disabled women and girls must be explicitly included in a United Nations Disability 
Convention according to disabled women activists and their supporters who met in New 
York in June. This inclusion is necessary because disabled women have been invisible for 
too long in the existing human rights treaties and other human rights initiatives. In 
particular, the group noted, disabled women's right to self determination is frequently 
violated. 

 

Disability Rights: the View from Kazakhstan 

By Zhanat Zakiyeva; from a presentation made to the United Nations Economics and 
Social Commission for Asia and the Pacific (UNESCAP) Regional Meeting from 
November 4�7, 2003 in Beijing, China, DisabilityWorld 21 (2003) 

. http://www.disabilityworld.org/11-12_03/gov/kazakhstan.shtml

 

Kazakhstan supports an International Convention on Disabilities which will provide 
guidelines and collective measures for policy makers to pursue proper policies and plans, 
will diminish gap between the plans and actions, and will bring together the approaches 
of developing nations with the developed countries. Kazakhstan supports the idea of an 
International Convention on Disability to ensure that persons with disabilities enjoy all 
their human rights. 

 

Spotlight: Gerard Quinn and the U.N. Working Group on a Disability Convention 

By Michele Morgan, DisabilityWorld 22 (2004) 

. http://www.disabilityworld.org/01-03_04/news/unworkinggroup.shtml

 

A first-rate team of legal minds represented Rehabilitation International at the U.N. 
Working Group meeting where they played an active role in the important negotiations 
among governments and disability organizations working to hammer out a draft disability 
convention text. The meeting, held at the U.N. Secretariat building in New York from 
January 5�16, 2004, was attended by all Working Group members: 27 government 
representatives, 12 non-governmental organization (NGO) representatives and one 
representative from a national human rights institution. The composition of the 12 NGOs 
attending the Working Group was recommended at the second Ad Hoc meeting towards a 
disability convention held in New York in June 2003, and included one representative 
from each of the International Disability Alliance (IDA) organizations and five regional 
disability NGO representatives. 

 

Update on U.N. Disability Convention Process & Products 

DisabilityWorld 22 (2004) 

. http://www.disabilityworld.org/01-03_04/news/unupdate.shtml

 

The report of the U.N. working group that met in January 2004 to compile various drafts 
into an integrated text is available in U.N. languages. This text will be the main document 


for the Third U.N. Ad Hoc meeting on the convention, 24 May � 4 June in New York 

 

Kenya Forum Held on African Views on U.N. Disability Convention 

By Phitalis Were Masakhwe, DisabilityWorld 23 (2004) 

. http://www.disabilityworld.org/04-05_04/news/kenya.shtml

 

In December 2001, the General Assembly of United Nations adopted resolution 56/168, 
which established an ad-hoc committee to consider proposals for an international 
convention to protect and promote the rights and dignity of people with disabilities. 
Additionally, a working group was appointed to collect and collate draft texts on the 
same. 

 

Rehabilitation International's position paper on the Right to [Re]habilitation 

By Rehabilitation International, DisabilityWorld 23 (2004) 

. http://www.disabilityworld.org/04-05_04/news/righttorehab.shtml

 

Rehabilitation and habilitation go far beyond the health field and embraces a wide range 
of issues including education, social counseling, vocational training, transportation, 
accessibility and assistive technology. The intended goal of [re]habilitation would best be 
amplified under a separate article within the new U.N. Convention. The U.N. Convention 
should be a �visibility� project that will both highlight the rights and place of people with 
disabilities within society and �mainstream� disability into the human rights regime. The 
Ad Hoc Committee is urged to give the crafting of a separate article on the Right to 
[Re]habilitation its highest consideration. 

 

Read Online Summaries of U.N. Disability Convention Meetings 

DisabilityWorld 23 (2004) 

. http://www.disabilityworld.org/04-05_04/news/unconvention.shtml

 

Daily summaries of the 2003�2004 U.N. Ad Hoc Meetings on the Disability Convention 
and associated events are available online at www.rightsforall.org. The 10 day third Ad 
Hoc Meeting took place during the last week of May and the first week of June in New 
York at U.N. Headquarters. The summaries were prepared as a service of Landmine 
Survivors Network and translated into Spanish and Japanese by other non-governmental 
organizations. Congratulations to the mostly volunteer staff: editors Zahabia Adamalay 
and Laura Hershey; reporters Margaret Holt, Robin Stephens and Julia White; and 
production assistant Anny Gaul. 

 

Viewpoint: Where we are in the process of developing a U.N. Disability Rights 
Convention 

By Luis Fernando Astorga Gatjens, DisabilityWorld 24 (2004) 

. http://www.disabilityworld.org/06-08_04/news/unconvention.shtml

 


Now that the sessions of the Third Meeting of the U.N. Ad Hoc Committee are over, it is 
necessary to make a balance regarding the advances and achievements, obstacles and 
problems, together with the challenges and perspectives. That is my purpose with this 
special report. As planned, the Third Session of the Ad Hoc Committee established by the 
United Nations to work on a Comprehensive and Integral International Convention on 
Protection and Promotion of the Rights and Dignity of Persons with Disabilities, was 
inaugurated on May 24. 

 

Interviews with Latin American Leaders about the U.N. Convention process and 
prospects 

DisabilityWorld 24 (2004) 

. http://www.disabilityworld.org/06-08_04/news/interviews.shtml

 

Luis Fernando Astorga Gatjens conducted a series of interviews over the last few months 
with leaders from Costa Rica (Jorge Ballestero), Chile (Maria Soledad Cisternas Reyes) 
and Guatemala (Silvia Quan Chan). 

 

Disability Caucus Closing Statement, U.N. 4th Ad Hoc meeting 

DisabilityWorld 25 (2004) 

. http://www.disabilityworld.org/09-11_04/news/caucus.shtml

 

We have come to the end of the 4th Ad Hoc Committee and we would like to present to 
you the views of the International Disability Caucus on the work so far and for the future. 
Many of us have spent 6 weeks this year in this Conference Room 4. The first two weeks 
in January were really outstanding. Huge progress was achieved and a good document 
was prepared, which continues to be the basic reference document in the negotiations. 
The 3rd and 4th Ad Hoc Committee meetings have been useful in order for all to have a 
better understanding of the key issues, but very little progress has been made in terms of 
advancing the text of the Convention. We think that the time has come to bring this 
negotiation process to a good conclusion. We feel that the political will is there and we 
should not miss this historic opportunity. 

 

Progress Report on U.N. Disability Rights Convention 

Prepared by Mr. Gidion Kaino Mandesi, DisabilityWorld 25 (2004) 

. http://www.disabilityworld.org/09-11_04/news/progressreport.shtml

 

The process of drafting the United Nations Convention on Disability rights and 
negotiations about its contents to be included and structures for effective monitoring 
implementation of such Convention at the national and international levels, is now one of 
the top priorities of the majority U.N. member states and international disabled peoples 
organizations and other Non Government Organizations. This could be evidenced by the 
fact that More than 100 Government delegations and 35 NGOs, including Rehabilitation 
International and other international Disabled People�s Organizations that are members of 


the International Disability Alliance (IDA) spent 2 weeks from 23rd August to 3rd 
September 2004 at the U.N. headquarters in New York to participate in the process of 
drafting and negotiations on many aspects of the proposed draft text. 

 

Japanese Government & NGO Partnership on U.N. Convention 

By Kim Jeong-Ok, Deputy Secretary-General, Japan National Assembly of DPI, 

DisabilityWorld 26 (2005) 

. http://www.disabilityworld.org/12-02_05/news/japanesengopartnership.shtml

 

From 23 August to 3 September 2004, the 4th session of the Ad Hoc Committee on a 
Comprehensive and Integral International Convention on Protection and Promotion of the 
Rights and Dignity of Persons with Disabilities was held at the United Nations 
Headquarters in New York. From Japan, in addition to the delegates from the cabinet 
office, Ministry of Justice, Ministry of Foreign Affairs and Ministry of Education, 
Culture, Sports, Science and Technology, headed by Mr. Shigeki Sumi, Deputy Director-
General, Multilateral Cooperation Department of Ministry of Foreign Affairs, a total of 
25 people representing JDF (Japan Disability Forum Preparation Committee), including 
their interpreters, participated in the meeting. Moreover, five members of the Diet 
(Parliament) joined for the first time and two side-events (seminars) were held during the 
session, cosponsored by the Permanent Mission of Japan to the United Nations and JDF. 
The first one was on �Reasonable Accommodation with Emphasis on Employment and 
Education� and the latter one was on �Possible Impacts of the Convention in Different 
Countries and Regions�. There were many participants in both seminars and these 
energetic efforts by Japan drew attention from the delegates from various countries and 
were highly appreciated. Such results came from the collaborative efforts of the Japanese 
Government and JDF. 

 

Jordan: Prince Raad bin Zaid in Support of the U.N. Convention 

Speech presented to RI/International Paralympic Committee Symposium, Greece, 

DisabilityWorld 26 (2005) 

. http://www.disabilityworld.org/12-02_05/news/binzaid.shtml

 

After a long history of total neglect, disability as a human rights issue has finally gained 
momentum in international recognition. After continually being denied their basic human 
rights, people with disabilities have experienced such severe and tortuous lifelong 
discrimination, which hopefully would be eradicated in the days to come the world over. 
More than 500 million people with disabilities around the globe live in the developing 
world, and are denied access to the resources necessary to meet their basic needs; their 
vulnerability is even greater during times of conflict or disaster when they are often 
ignored and are ill-treated. The elimination of all forms of discrimination lies at the heart 
of the U.N. mandate and is reflected in all international instruments. 

 


 Selected Articles and References on 
Improving Accessibility of Elections 

 

 

 

 

 

INTERNATIONAL INFORMATION AND RESOURCES 

 

Global Initiative to Enfranchise People with Disabilities (2005) 

For news and examples of best practices of improving the accessibility of voting, polling 
places and other aspects of elections, visit http://www.electionaccess.org. This website, a 
service of the International Foundation for Election Systems, reports on projects in 
Africa, Asia, Central Europe and North and Latin America to expand enfranchisement of 
voters with disabilities. A short bibliography with links to articles about similar efforts in 
the U.S. follows. IFES is committed to extending the reach of democracy through 
technical assistance and support to governmental and nongovernmental organizations in 
new and emerging democracies. 

 

 

INFORMATION AND RESOURCES: USA 

 

AAPD Disability Vote Project (2005) 

. http://www.aapd-dc.org/dvpmain/newdvpindex.html

AAPD's Disability Vote Project will push for meaningful election reform, continue 
efforts to get out the disability vote, focus on polling place and voting system access, 
encourage service providers to people with disabilities to comply with the provisions of 
the National Voter Registration Act, and encourage people with disabilities to run for 
office and to get involved in the political process for the candidate of their choice. 

 

ADA Checklist for Polling Places (2004) 

By the U.S. Department of Justice, Civil Rights Division, Disability Rights Section 

. http://www.usdoj.gov:80/crt/ada/votingchecklist.htm

 

Barriers Restrict Voting by People with Disabilities (2004) 

. http://www.nod.org/index.cfm?fuseaction=page.viewPage&pageID=1430&nodeID 
=1&FeatureID=1463&redirected=1&CFID=3383794&CFTOKEN=44751331

 



Twenty-one percent of U.S. adults with disabilities�representing more than eight million 
potential voters�say they have been unable to vote in presidential or congressional 
elections due to barriers faced either at, or in getting to, the polls. The findings raise 
serious issues for the upcoming elections, which already are cause for concern among 
voting rights advocates. This poll result is part of a larger disability survey project 
studying voter preferences, issues of concern, and barriers to voting during this election 
season. This survey project by the National Organization on Disability has been made 
possible by a grant from Carnegie Corporation of New York. 

 

The Disability Vote Made History in 2000. In 2004, It May Do So Again. (2004) 

By Brewster Thackeray, Vice President & Director of Communications, The National 
Organization on Disability 

. http://www.jfanow.org/jfanow/index.php?mode=A&id=1923

This paper is an analysis by The National Organization on Disability's Brewster 
Thackeray regarding the impact of the disability community in the 2000 presidential 
election and the difference the disability community may make in the 2004 election. 

 

 

What politician can afford to overlook one-fifth of the nation's voting-aged population? 
That massive slice of the electoral pie comprises the roughly 40 million Americans with 
disabilities who are of voting age. Though not as cohesively identified as other minority 
groups, the disability vote is one that politicians ignore at their peril. 

 

NOD Survey Shows People with Disabilities Gave Unprecedented Support to President 
Bush (2004) 

. http://www.nod.org/index.cfm?fuseaction=page.viewPage&pageID=1430&nodeID= 
1&FeatureID=1470&redirected=1&CFID=3383794&CFTOKEN=44751331

A National Organization on Disability survey found a dramatic shift in support toward a 
Republican presidential candidate, a clear majority of voters with disabilities choosing 
George W. Bush over Sen. John Kerry in the U.S. national election. According to a 
survey conducted by telephone between October 29 and November 1, 2004 by Harris 
Interactive�, likely voters with disabilities preferred President George W. Bush over 
Senator John Kerry by 52.5 percent to 46 percent. One percent of likely voters with 
disabilities preferred Ralph Nader. 

 

Voting Rights of People with Disabilities (2004) 

An ILRU Web cast presented by Clyde Terry 

. http://www.ilru.org/online/archive/2004/10-27-CT.html

 

This Web cast focuses on the rights of citizens with disabilities to vote and to have their 
polling places and processes accessible to and usable by them. The Web cast examines 
the impact of the laws enhancing voting rights for people with disabilities, namely the 
Americans with Disabilities Act (ADA), the Voting Accessibility for the Elderly and 


Handicapped Act (VAEHA), and the Help America Vote Act (HAVA). Additionally, Mr. 
Terry shares ideas about practical steps to take during the short-term, before we are able 
to accomplish systems change. 

 

Voting Technology for People with Disabilities: A Report on Disabled Voters 
Experiences (2003) 

By Manhattan Borough President, C. Virginia Fields and The Center for Independence of 
the Disabled in New York, Inc. 

. http://www.cvfieldsmbp.org/MBPO%20Documents.html

 

Voters with Disabilities: Access to Polling Places and Alternative Voting Methods 
(2001) 

GAO Reports: GAO-02-107 

. http://www.gao.gov/new.items/d02107.pdf

 

Voting: A Constitutional Right for All Citizens (2001) 

. http://www.nod.org/index.cfm?fuseaction=page.viewPage&pageID=1430&nodeID= 
1&FeatureID=173&redirected=1&CFID=3383794&CFTOKEN=44751331

A revised and updated version of the National Organization on Disability's, �Disabled 
Citizens at the Polls: A Guide for Election Officials,� this detailed guide is published 
jointly by the National Task Force on Accessible Elections and the Election Center. 

Voting: A Constitutional Right for All Citizens covers access to polling places for all 
disabilities. It includes charts and other materials that will provide local election officials 
with all the tools they need to make their polling places 100% accessible. 

 

Voting and Election Reform: Background Paper No.9 

Fact Sheet on Voter Turnout, Voting Difficulties, and Disability in the 2000 Elections: 
Laying A Challenge at Democracy's Door (2000) 

By Douglas Kruse and Lisa Schur, Rutgers University and Kay Schriner and Todd 
Shields, University of Arkansas 

. http://www.wcdd.org/dawn/votebackground/fact_sheet_voting.cfm

 

American democracy rests on the participation of the citizenry in the selection of elected 
officials. By choosing their representatives, citizens express their views about what 
matters to them and what should be done about it. Not every American citizen has an 
equal opportunity to cast a ballot, however. Many thousands of voters and potential 
voters are disenfranchised by barriers to electoral participation. 

 

These barriers are a threat to the potential of our democracy to realize its promise of 
equality and justice for all. When some voters cannot participate in an equal footing, all 
Americans lose. When some citizens are left out, democracy suffers. For many disabled 
citizens, elections represent another example of society's inaccessibility. This report is 


intended to clarify the experiences of people with disabilities in American electoral 
politics. 

 

People with Disabilities and Voting (2000) 

. http://www.accessiblesociety.org/topics/voting/

What if you wanted to vote but the polling place was locked? For many of the 33.7 
million Americans with disabilities of voting age, this situation is all too real. Not 
because polling officials are deliberately blocking disabled people from entering, but 
because so many polling places are inaccessible. In fact, the Federal Election 
Commission reports that, in violation of state and federal laws, more than 20,000 polling 
places across the nation are inaccessible, depriving people with disabilities of their 
fundamental right to vote. 

 


 Recommended References 
on Governance & Disability 

 

 

 

 

 

 

The editors of this report could find few references documenting the experiences or 
impact of disabled individuals appointed or elected to high governmental positions. The 
few that we were able to identify follow, together with summaries of new books 
presenting international information on implementation of disability rights. 

 

 

The ABC Clio Companion to The Disability Rights Movement 

By Fred Pelka and published by ABC-Clio Inc. in 1997. ISBN 0874368340. 
This 422-page volume serves as a standard reference on the Disability Rights Movement. 
Includes dates of Movement milestones such as the1977 504 demonstrations in San 
Francisco and provides precise definitions of Movement terminology. 

 

Country Reports on Human Rights Practices 

Submitted annually to the Congress by the Department of State in compliance with 
sections 116(d) and 502B(b) of the Foreign Assistance Act of 1961 (FAA), as amended, 
and section 504 of the Trade Act of 1974, as amended. 

The law provides that the Secretary of State shall transmit to the Speaker of the House of 
Representatives and the Committee on Foreign Relations of the Senate, by February 25 
�a full and complete report regarding the status of internationally recognized human 
rights, within the meaning of subsection (A) in countries that receive assistance under this 
part, and (B) in all other foreign countries which are members of the United Nations and 
which are not otherwise the subject of a human rights report under this Act.� In the past 
few years, these reports have also included information on implementation of rights of 
disabled persons. Also included are reports on several countries that do not fall into the 
categories established by these statutes and that thus are not covered by the congressional 
requirement. The 2004 Human Rights Reports are located online: 
http://www.state.gov/g/drl/rls/hrrpt/2004/index.htm

 

Disability Policies in European Countries 

Edited by Wim van Oorschot and Bjorn Hvinden and published by The Hague: Kluwer 
Law International in 2001. ISBN 90 411 1591 9. 



This book reviews and discusses the disability policies that were developed in six 
Western European countries in recent years. What have been the major changes? Have 
the disability policies of these countries become more similar in the course of the 1990s? 
If so, is it possible to identify a closer relationship between the emerging EU Disability 
Strategy and national policy developments in this area? Countries included are Sweden, 
Denmark, The Netherlands, The United Kingdom, Ireland and Spain. All contributions 
include detailed information on recent changes in disability policies in the respective 
countries. 

 

Disability Rights in the Accession Countries 

By the European Disability Forum. Includes the topics: Historical context for disability 
rights in the Accession Countries; Capacity building of disabled people's organisations in 
10 Accession Countries; Ingemar F�rm, consultant to the project share his views; What is 
the state of play in the countries involved in the Capacity building project? More rights 
for people with intellectual disability and their families in Central and Eastern Europe; 
Improving access to rights-based treatment; and Political experience in enforcing the 
interest of disabled people. The Bulletin may be downloaded at http://www.edf-
feph.org/en/publications/bulletin/bull_co.htm. 

 

Disabled Rights: American Disability Policy and the Fight for Equality 

By Jacqueline Vaughn Switzer and published by Georgetown University Press in 2003. 
ISBN 0878408983. 

Disabled Rights explains how people with disabilities have been treated from a social, 
legal, and political perspective in the United States. With an objective and 
straightforward approach, Switzer identifies the programs and laws that have been 
enacted in the past fifty years and how they have affected the lives of people with 
disabilities. She raises questions about congressional intent in passing the ADA, the 
evolution and fragmentation of the disability rights movement, and the current status of 
disabled people in the U.S. This is a compassionate and powerful book that demands 
attention from anyone interested in the battle for disability rights in the United States. 

 

Disability Rights Law and Policy: International and National Perspectives 

Edited by Silvia Yee and Mary Lou Breslin of the Disability Rights Education and 
Defense Fund (www.dredf.org) and published by Transnational Publishers 
(www.transnationalpubs.com) in 2002. ISBN 1-57105-240-2. 

The nearly 500-page text analyzes the legal, social and policy changes wrought by 
disability community advocacy work around the world during the past quarter century, 
opening with a comparative survey of international, regional, and national disability law 
reform. Other essays cover the ideal of justice that underlies anti-discrimination law as an 
approach to disability, the conflict between charitable and rights-based social models of 
disability, the emerging right under international and U.S. law to community integration 
for people with disabilities living in institutions, current challenges to effective 
enforcement of disability anti-discrimination laws and policies, and an assessment of 


accessibility achievements under the ADA. The book looks at grassroots organizing and 
coalition building, the proposed United Nations Convention on the Rights of People with 
Disabilities, and international development and civil society. 

 

Disability Rights Online News 

By the U.S. Department of Justice Civil Rights Division. 

A monthly update about the Civil Rights Divisions activities in the area of disability 
rights. The Division enforces laws prohibiting discrimination based on disability in 
employment, housing, access to businesses serving the public, access to government 
programs and services including voting and public transportation, and unconstitutional 
conditions in institutions of confinement. Launched in June 2004, the newsletter is 
located online: http://www.usdoj.gov/crt/ada/disabilitynews.htm. 

 

FDR�s Splendid Deception 

By Hugh Gallagher, first published 1985. FDR Memorial Edition, 242 pages, published 
1999 by Vandamere Press, Arlington, Virginia (www.vandamere.com). 

This biography of President Franklin Delano Roosevelt may be the only in-depth study of 
the impact of disability on a head of national government and, in turn, the nation. In his 
preface, Gallagher states, �Without exception, the many biographies and films that that 
have followed publication of FDR�s Splendid Deception have recognized the importance 
of Roosevelt�s disability. It is now an accepted fact that FDR�s paraplegia is a key to the 
full understanding of the man and his leadership.� 

 

FDR�s Statue Victory 

By Hugh Gallagher, article published in June�July 2000 issue of DisabilityWorld 
(www.disabilityworld.org). 

The FDR biographer comments on the struggles and significance of the success of the 
disability movement in having a statue commissioned of the WWII president sitting in his 
wheelchair. The statue was added to the FDR Memorial after extended protests and 
fundraising efforts by the disability movement. 

 

The International Disability Rights Monitor: Regional Reports of the Americas 

Documents the situation of people with disabilities in 24 countries of South and North 
America. The United States, Canada and Brazil ranked among the most inclusive 
countries in the report, while Bolivia, El Salvador and Guatemala scored among the 
lowest. This is the first report of the International Disability Rights Monitor (IDRM), an 
initiative by The Center for International Rehabilitation (CIR) and other members of the 
disability community to document and assess disability rights and abuses in every 
country across the globe. The report provides vital data about disability rights, published 
just as the United Nations began two weeks of historic meetings in 2004 to debate the 
proposed International Convention on the Rights of People with Disabilities. Copy of the 
full report is available in print and online: 
http://www.cirnetwork.org/idrm/reports/americas/index.html. 


 

Journey into Silence 

By Jack Ashley. Published in 1973 by The Bodley Head, London, largely out of print. 
ISBN 0370013840. 
This 192-page autobiography of the only deaf British Member of Parliament captures the 
early part of Ashley�s career: elected in 1966, he continued in the House of Commons 
until 1992, when he was appointed a life baron. 

 

Lord Ashley: Battler for the Disabled 

Published in the BBC News on November 4, 1999. It focuses on Ashley�s pivotal role in 
forcing changes to what he considered flawed British disability rights legislation, passed 
by the House of Commons, then referred to the House of Lords. Located online: 
http://news.bbc.co.uk/1/hi/uk_politics/504707.htm. 

 

Nothing About Us Without Us: Inside the Disability Rights Movement of South Africa 

By Dr. William Rowland, published by Unisa Press in Pretoria, South Africa 
(www.unisa.ac.za/press). Dr. Rowland, an early South African disability rights advocate 
and newly elected president of the World Blind Union, has written the first history of the 
struggles against apartheid from the disability perspective. His book also takes us through 
South Africa�s first decade of democracy, providing a window on and witness to the day 
to day realities of how a top-down and essentially closed society transforms itself. 

 

The first two chapters describe the onward rush of the disability struggle as part of the 
broader political movement in South Africa. The next chapter deals with economic 
empowerment, as an extension of the struggle into new areas. Rowland then gives an 
account of the transformation of the SA National Council for the Blind, and describes 
three unique initiatives in South Africa around new models of service delivery and self-
help. This is followed by five interviews, each giving a personal perspective on the 
Disability Rights Movement, and recounting particular aspects of its history. In the last 
chapter, rural development and the spread of the movement throughout the Southern 
African region are taken up. 

 

Dr. Rowland concludes: �So these were some of our adventures, but the point of it all 
was to spread the message that by organizing ourselves we could change things around us 
and the attitude of governments. This we have continued to do everywhere in the 
countries of South and Southern Africa for twenty years and more, and yet the process is 
far from ended.� This book is also available in Braille and in audio editions from the 
South African Library for the Blind, Grahamstown. For enquiries, contact Natalia 
Molebatsi, tel: (012) 429 3495; fax: (012) 429 3449; email: molebn@unisa.ac.za. 

 

Reforming Worker Protections: Disability Pensions in Transformation 

Edited by Elaine Fultz and Markus Ruck and published by International Labour 
Organization, Geneva in 2002. 


This book covers disability policy reforms that have taken place in the Czech Republic, 
Estonia and Poland in the context of the economic and political transition in Eastern and 
Central Europe since 1989. The book starts with an overview chapter by Elaine Fultz on 
the reforms in the Czech Republic, Estonia and Poland. Then for each of these countries, 
the book has a separate chapter by individual authors that includes a comprehensive 
description of the disability pension scheme before 1989, the main elements of the policy 
reforms and an evaluation of the initial impact of the reform efforts when data are 
available. 

 

The World Became My Room 

By Kalle Konkkola, published 1996 in Finnish, 2003 in English by Werner Soderstrom 
Osakeyhtio, Helsinki. ISBN 951-0-21023-4. 

This 240-page paperback is the autobiography of one of Europe�s leading disability 
activists and philosophers, who also became Finland�s first wheelchair-using Member of 
Parliament. The book also recounts the challenges and successes of Kalle and his wife, 
Maija Konkolla in their terms of service to the City Council of Helsinki.