Paralysis, Disability, and Disaster Readiness

Hi! I’m Ruf ‘n’ Ready, the Disaster Readiness Service Dog!

Disaster Readiness may feel like a huge challenge for people in the paralysis community, with all the other challenges in our lives. I’m here to help you get ready!

Disaster or emergency events like floods, fires, tornados, earthquakes and other natural and human-caused events are especially hard on people with paralysis, along with other disabilities. Among other things, people with paralysis should:

  • Connect with neighbors, friends, family and caregivers to check in and help you out if a disaster hits. Support networks are vital before, during and after disasters!
  • Gather emergency supplies to shelter in-place or take with you, if you need to evacuate. These include basic emergency supplies like water, non-perishable food, and flashlights – as well as paralysis-related resources like wheelchair chargers, medical goods and bathroom care supplies. Pack today!
  • Develop an evacuation plan. Do you live on upper levels of an apartment building? Then have a backup wheelchair in your garage and a plan to get down the stairs! Figure out transportation ahead-of-time, whether it’s an emergency driver or understanding your city’s resources. Transportation plans can keep you safe!
  • Identify shelter and related needs after a disaster. You may need to leave your home for days, weeks or more. Having accessible, inclusive place to stay is a must!
  • Sign up for local emergency notifications. Your city, county or state may reach out over radio and TV or through email, phone calls and text messages. Enroll in emergency lists to know when you may need to evacuate!

Remember, planning ahead for our safety is crucial! Start now, because you never know when a disaster could come your way.

The educational materials below can help you get ready! You’ll feel better about disaster readiness when you start planning for your own (and others’) safety and well-being.

We are grateful to the Christopher and Dana Reeve Foundation for their generous resources to create this and many other projects to ensure our health, safety, participation and inclusion in our world. For more information on their fantastic work, visit www.ChristopherReeve.org

Tri-fold hand-out

This one-pager can be downloaded and copied for everyone! It introduces the most important points for readiness, including items for your “Go Bag” and tips for awareness and planning. Keep one on hand for yourself or print some for your local friends and organizations.

Disaster readiness trifold

Large print pamphlet

This pamphlet includes all of the great recommendations in our tri-fold, with extended information and larger text for people with low vision and anyone that would like info on a full page. Download it, read it and share with your friends!

Disaster Pamphlet – large print

Disaster readiness video

This 10 minute video, hosted by me, Ruff ‘n’ Ready, is a great way to learn about disaster readiness. Post this on your website! Share it with friends! Spread it over social media! Consider hosting a gathering with people in your community, Independent Living Center or any group, to show the video and have a discussion — or a party! This will help you and others plan together and support each other to stop putting it off and get ready!

Disaster Readiness Policy Paper

Disability Disaster Readiness – Overview & Recommendations – WID2019

This document explores the history and the range of social and personal factors that affect our community’s experience of disasters and emergencies. Extensive policy and practice recommendations are offered to support community readiness. This paper can be distributed to policy-makers, agencies, and first-responder organizations in your community to alert them to important changes they can make to protect our safety and well-being. It can also be used by paralysis advocates to learn what to push for in their communities!

Webinars

Here are recordings of two webinars we presented, one directed to people with paralysis and their families, and one directed to disability agencies, about readiness for our communities. View the videos below to learn more!

Disaster Readiness and Paralysis – a Webinar for Individuals and Allies

Disaster Safety for People with Paralysis – Webinar for Professionals and Advocates

Thank you for visiting our site and learning about paralysis and emergency preparedness. This can help you make your own plans – and create inclusive disaster readiness in your community. Please plan ahead, spread the word and protect people with paralysis everywhere!

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End the Atrocities at Border Detention Facilities

The World Institute on Disability (WID) joins with organizations and individuals from across the country calling for an end to the atrocities being committed at south Texas detention facilities, more accurately called concentration camps or, at minimum, internment camps as addressed in the July report of the Office of the Inspector General from the US Department of Homeland Security. The degree of inhumanity on display is frightening and devastating.

We respectfully request that the Commission immediately conduct a comprehensive in loco visit to the United States and Mexico to consider actions and policies by both States that are having dramatic negative impacts on the human rights of migrants, particularly asylum-seeking Central Americans who transit through Mexico to reach the United States. We ask that the visit be followed by a report that considers the full extent of human rights violations experienced by migrants in Mexico and the United States. We further request that, after this visit, the Commission engage in ongoing, robust monitoring of the treatment of migrants in the region. This monitoring should include hearings before the Commission during its sessions, additional visits to the region—including the southern border of Mexico and Central America—, development of standards relating to the treatment of migrants “safe third country” and prompt consideration of precautionary measures requests and individual complaints.

WID believes that the mistreatment of asylum-seekers at the border is related to a broader cultural decay that has taken root in US society.

The Nonprofit Quarterly states, “We could cite many examples. The revealing of sexist and racist posts by customs officials on Facebook is one obvious example. We also recall that it was less than two years ago when Nazis openly marched in the streets in Charlottesville.”

And, where in all this inhumane process is the inclusion of people with disabilities in receiving much-needed services and/or medical care? When over 20% of the world’s population has a disability, people being held forcibly at our southern border are disproportionally more likely to have a disability or to acquire a disabling condition as a result of their treatment placing them in much need of disability-related services and justice.

WID joins our “civil society partners in knowing we must declare racial superiority as antithetical” to our common humanity and that our leadership supports racial, disability and economic justice in our organizations, our communities and in society as a whole.

WID demands that immigrants with disabilities be given rights granted under the Americans with Disabilities Act (ADA), be evaluated for their access needs and receive effective and timely service.

Comments on this statement may be directed to Anita S. Aaron, Executive Director/CEO, World Institute on Disability, anita@wid.org.

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A futuristic robot thinking, surrounded by math equations

AI AND ACCESSIBILITY

Artificial Intelligence (AI) or artificial narrow intelligence (ANI), artificial general intelligence (AGI), artificial super intelligence (ASI) is a critical issue for people with disabilities and it will only grow in its impact. The World Institute on Disability (WID) is aware that AI has already brought many remarkable tools to disability access and inclusion; what has already been achieved illuminates the promise that AI can facilitate more accessible content for people with disabilities.

For example, software is now learning how to recognize and respond to images, sounds, and linguistic expressions, which have opened up new opportunities for people with many disabilities. When the data sets used are designed for full inclusion, tools like those outlined below will positively change the landscape for people with disabilities:

  • For individuals who are deaf or have hearing loss, auto-captioning with AI.
  • For people who are unable to drive, autonomous cars built with Universal Design principles.
  • For people who are blind or have low vision, facial recognition and image recognition to support interaction with the environment.
  • For people with cognitive disabilities, language use to facilitate comprehension.
  • For job seekers with disabilities, with an unemployment rate of more than twice their non-disabled peers, outcomes can change with the development of accessible and intelligent AI solutions which will support job seekers and employees in developing their professional skills, improve workplace culture and expand inclusive hiring.

The concerns of WID, many corporations and public and private sector organizations focus on the critical need for AI standards for privacy, ethics and bias so that full inclusion of persons with disabilities in the evolution of AI occurs. Many of us foresee compounded risks of AI use unless there is commitment to and prioritization of privacy, ethics and bias.  For example:

  • Models learning from biased data may reproduce and continue historical biases;
  • Training data may under represent outlier populations, which often include people with disabilities, and therefore thwart or deny full inclusion;
  • Building inclusive data sets will prove essential for developing effective solutions, but also hold challenges such as requiring people to waive privacy rights;
  • Data collection, machine learning training protocols and programming may not include representation from individuals with disabilities or professionals in the field with the appropriate knowledge to plan for full inclusion; and,
  • Safety, security, bias and accessibility may be a lower priority than speed.

So, while AI is a great opportunity, it is also a great threat to full inclusion for people with disabilities.  Most researchers, accessibility experts, and disability rights organizations agree that building inclusive data sets is one of the greatest challenges for researchers and that AI accessibility should be a base level requirement for AI standards.

WID also recommends that persons with expertise in disability culture and accessibility be engaged early in the AI standards development, as well as those with expertise in recognizing and addressing implicit bias and those who can set guidance for developing inclusive data sets.  Inclusion of those with appropriate expertise will go far to achieve full inclusion of persons with disabilities in future data sets.

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WID’s Current Initiatives-2019

For 35 years the World Institute on Disability has been dedicated to examining the cutting-edge issues faced by people with disabilities on a local and global scale. WID’s mission was built on a foundation of civil rights activism that its founders Ed Roberts, Judy Heumann, and Joan Leon embodied when they established this organization in 1983. The world that WID envisioned was one in which people with disabilities could lead fully integrated lives, void of barriers and institutionalized obstacles.

Today, WID’s current team of professionals, activists, and policymakers believes in this mission more than ever and we are always expanding our scope of knowledge to address the needs, wants, and opportunities of our changing world. Our policy and educational work centers around inclusion and universal design, and we are dedicated to the fight for equality. WID’s work addresses the diverse needs of the disability community for creative and innovative accommodations and solutions.

Painting depicting a scene of downtown Berkeley, including a wheelchair user with their service dog, as well as merchants selling jewelry at a street faire.
Section from a Patrick Connally painting inside the WID Berkeley office

2019 is going to be an exciting year for us. We are broadening the reach of long-term projects to encompass new initiatives that pinpoint barriers within the disability community. Our goal this year is to use our research to provide nuanced answers to the problems that hinder people with disabilities from living their lives to the fullest. Following are a number of 2019 initiatives we are excited to work on. You will find relevant links for each project in the descriptions if you wish to learn more about the work we do.

WID E3

WID E3 is a disability empowerment model and set of resources created to provide valuable tools to job-seekers with disabilities to promote entrance into the workforce. Effective programs and resources have been developed by WID’s subject matter experts to support the dynamic nature of working with a disability. These components are suitable for use by special education, post-secondary, rehabilitation, workforce, independent living programs, and individuals with disabilities. WID E3 materials can also help both family members and related professionals become more effective. WID E3’s components are designed to be added to existing employment efforts, either in whole or in part.

The model is divided into three focuses to offer comprehensive information about career and savings integrity. These are the Employment, Economic, and Disability Benefit Empowerment programs. For complete access to these navigational tools, follow through to the WID E3 main page.

Disaster Preparation and Resilience

Environmental research is the foundation for WID’s climate change initiative New Earth Disability (NED). The primary concern of this project is to identify challenges for the disability community posed by climate change and establish the best responses to these issues. NED works to educate the public and involve various stakeholders to ensure concrete resources for people with disabilities as natural disasters and environmental change persists.

NED is kicking off 2019 with a new project consulting the Metropolitan Transportation Commission on how to improve city infrastructure to enable people with disabilities to live active, dynamic lives. Our team regularly presents to community partners on our research findings, and these platforms and connections will be implemented to focus on transportation-centered concerns. This project is state funded and will examine topics such as disability-centered evacuation during wildfire disasters and improved paratransit reliability.

International Development and Capacity Building

The New Leaders Fellowship Initiative is a program built on WID’s role as a host organization for fellows from the Mandela Washington Fellowship, the flagship program of the Young African Leadership Initiative (YALI).  WID facilitates opportunities to share best practices, to start dialogues about common issues around disability, and to view the bigger picture of disability worldwide.

DPO Leadership and Management Training is a worldwide capacity building initiative to facilitate the growth and prevalence of Disabled Persons Organizations through knowledge transfer and education in advocacy, development and funding. The International project works with NGOs providing essential services in developing and conflict-ridden countries to build policies and practices into NGO services that include individuals with disabilities.  WID focuses particularly on services related to DPOs and organizations focused on climate change, peace-building and Employment.

Find more about WID’s international initiatives and programs on the World Programs site.

Accessibility Consulting

Here at WID, we believe that accessibility should be an inherent aspect of design to include people with disabilities as participants, clients, and subscribers. Technology and services often require upgrades to better accommodate disability-related needs such as assistive device compatibility or multiple learning-style models of information sharing. Our team of consultants works with organizations to educate their service developers on how to improve their products and better serve the disability community long-term. This project is called Accessibility Consulting.

The accessibility projects focus on three main areas. The Business and Industry initiative partners with the financial, technology, educational Software, and consulting arenas to expand their ability to provide accessible services to their clients and employees. The User Testing initiative focuses on webpage and app accessibility in order to provide information to developers and distributors on the accessibility and usability of products. Lastly, the Conference Accessibility project sends WID staff to national conferences with a total attendance of more than 5,000 people. Our goal is to make these conferences accessible and relevant for people with disabilities, while also educating the conference organizers about disability barriers and accommodations.

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Welcoming in the 2019 WID Board of Directors

The start of every new year is an inspiring time. The first few winter months serve as a benchmark for taking stock of values and appreciating growth, and each fresh start is accompanied by hope, anticipation, and ambition. Here at the World Institute on Disability, we have the pleasure of ringing in 2019 with a new assembly of officers and members as our executive board. These esteemed people have committed to upholding WID’s mission and helping extend our reach to better facilitate disability empowerment. This new grouping of members has already inspired ambitious goals and WID is starting off 2019 with strong optimism.

We are very excited to welcome long-term member Kevin Foster to his new position as Chair, along with five new members to the Board of Directors. These are representatives of the disability justice movement who we are confident will be incredible leaders in these new roles. Please join us in warmly welcoming Kevin to his new position as Board Chair.

Kevin Foster stands on stage at a mic, smiling out at the crowd
Kevin Foster at WID’s Ever Widening Circle Reception in 2018 | Photo by Ripley Hayden

Kevin Foster is a human resources and diversity professional who has previously worked with Motorola Solutions for over twenty years. As he begins his term as Board Chair, Kevin is leading WID staff in external assessment exercises to creatively and thoughtfully examine WID’s impact. His goals include analyzing feedback and developing new strategic plans to better serve the needs of a changing and evolving world.

He is joined by new members:
Zachary Bastian, Manager, Public Policy & Strategic Alliances at Verizon, who coordinates policy creation and negotiation with organizations to best reflect diverse and intersectional communities.

Bryanna Evans, Manager of External Affairs at CTIA, who manages CTIA’s accessibility initiative-Access Wireless-acting as a key convener between industry and leaders in the accessibility community.

Kiran Kaja, Technical Program Manager with Google, who works on accessibility and ensures that assistant-based products and features are useful to everyone including users with disabilities

Kamilah Martin-Proctor, Chair DC Commission on Persons with Disabilities, Founder of the Martin Multiple Sclerosis Alliance Foundation (MMSAF) and who has served as Vice-Chair on President Barack Obama‘s National Council on Disability.

Susan P. Mazrui, Director of Public Policy at AT&T, who works on public policy issues related to disability and aging, and serves as the liaison with national disability organizations for AT&T Services Inc.

While we welcome these incoming members and celebrate Kevin Foster’s new role, we would be remiss to not pay our respects to Carol J. Bradley and her incredible leadership, who served as WID’s Chair from 2016 to 2018 and remains on WID’s board as Immediate Past Chair. She also remains a Disability Compliance Officer with the Sutter Health Office of the General Counsel. We appreciate Carol’s dedication to our organization and we are thrilled to have her remain with us throughout the oncoming years.

Foster, Bradley, Bastian, Evans, Kaja, Martin-Proctor and Mazrui join WID’s current board members, of whom you may view in total on our Meet Our Board page.

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WID Supports the Transformation to Competitive Employment Act

Statement from Anita Shafer Aaron, WID Executive Director/CEO

Feb 01, 2019, Berkeley, CA

On January 31, Rep. Bobby Scott, Sen. Bob Casey, and Rep. Cathy McMorris Rodgers introduced the Transformation to Competitive Employment Act, which provides states, service providers, sub-minimum wage certificate holders, and other agencies with the resources to help workers with disabilities transition into competitive, integrated employment. This legislation is designed to strengthen and enhance the disability employment service delivery systems throughout states, while sub-minimum wages- currently allowed under Section 14(c) of the Fair Labor Standards Act-are to be phased out over a six-year period.

The World Institute on Disability (WID) supports this legislation. We are strongly committed to competitive, integrated employment in mainstream environments for people with disabilities and further that they receive fair and equitable wages for their work.

The employment rate for people with disabilities has been flat for over forty years (hovering around 33%) and many of those who are employed are in sub-minimum wage jobs. It is time to promote legislation that intends to make people with disabilities an equal and included part of the American labor pool.

WID’s mission in communities and nations worldwide is to eliminate barriers to full social integration and increase employment, economic security, and health care for persons with disabilities. WID’s signature program-WID E3-addresses the need for integrated, competitive employment options for people with disabilities.

Employment & Economic Empowerment

The Labor Force Participation Rate for the general public is 77%. For people with disabilities, that rate has been hovering around 33% for the last 40+ years. This is in spite of 40+ years of numerous employment initiatives, laws, and programs created to promote people with disabilities entering the workforce. The question is: what’s missing?

The American labor pool-which includes captains of industry, business owners, employees, and prospective job seekers-needs a “first-step” educational effort designed to improve both the competitive employment expectations and knowledge of people with disabilities. WID E3 is such an effort.

WID E3 offers online resources and technical assistance designed to improve competitive employment outcomes for both youth and adults with disabilities. WID E3 fills the gap between where people might be and where other programs usually start. It is basic training, and when implemented, it’s a bridge.

WID E3 logo-a white Globe and E3 in white letters

The Employment Empowerment module creates a new disability employment perspective and teaches fundamental competitive employment skills. This instruction builds self-confidence and the knowledge necessary to become a competitive job applicant and employee who happens to have a disability.

The Economic Empowerment module shares new asset development and financial planning strategies, including the book EQUITY: Asset Building Strategies for People with Disabilities, A Guide to Financial Empowerment, developed by WID’s internal financial specialists. This section of WID E3 also offers a comprehensive guide for ABLE accounts to help people with disabilities navigate the ABLE program and plan for the future.

The Benefits Empowerment module offers disability benefits planning, training, and resources, including state-specific Disability Benefits 101 (DB101) online tools. Understanding the impact on federal and state benefits allows for accurate, informed decision-making about employment.

The goals of the Transformation to Competitive Employment Act can be achieved with the Employment and Economic Empowerment programs WID has developed, and we are confident these tools will assist the workforce as a whole in becoming an inclusive, integrated space for employees with disabilities.

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HLAA Convention 2018

WID staff member, Josephine Schallehn, attended the 2018 Hearing Loss Association of America (HLAA) convention. The following are her highlights of the event.

This year, I had the opportunity to attend the annual Hearing Loss Association of America (HLAA) convention in Minneapolis, MN, which offers myriad educational workshops on hearing loss, in addition to showcasing the latest technology and services for people with hearing loss. And needless to say, all presentations were real-time captioned, and the presentation rooms were looped, so attendees could listen to the workshops using the T-coil setting on their hearing aids or cochlear implants. (Learn more about loops here.)

A man speaks to the audience, captions onscreen to his right, an ASL interpreter woman to his left
The research symposium, “Listening in Noise,” with Andrew Oxenham, M.D. moderating and presenting | Photo by WID

One of the highlights of the convention was attending the research symposium, which focused on current and future approaches to one of the most vexing and frustrating issues that people with hearing loss encounter: how to listen and understand speech in noisy environments, a challenge that is also often referred to as the “cocktail noise problem.” Five experts from various fields represented on current research that may improve the circuitry used in hearing aids and cochlear implants to reduce/cancel noise. While the presentations were extremely informative and valuable and made excellent use of combining auditory and visual materials, they were nevertheless quite scientific. And the total length of the symposium was three hours.

Luckily, HLAA hosted an excellent one-hour webinar in August that succinctly recapped the crucial points presenters had made and how their research and findings may impact future development of hearing aids and cochlear implants. The consumer-friendly webinar can be replayed at any time, and it even includes a version of one of my favorite short videos shown during the symposium, i.e., a dancing outer hair cell.  The link to the webinar also allows for downloading the PDF used during the webinar.

Three people stand onstage and hold an award
Barbara Kelly of HLAA (center) with the rep from Galapro to her left and Kyle Wright from The Shubert Organization to her right | Photo by HLAA

“Radical Hospitality: Technology Solutions for Audience Inclusivity” was the other highlight and a total surprise at that because if The Shubert Organization and Galapro hadn’t been one of the awardees honored during the opening session of the convention, I wouldn’t have found out about how the app Galapro was developed. And I also wouldn’t have changed my workshop selection for Saturday morning and enjoyed a very informative and funny presentation given by Kyle Wright, Director of Digital Projects at The Shubert Organization.

The Shubert Organization, which owns the majority of theaters on Broadway, uses the Galapro to make live theater and opera performances accessible to everyone.  Theatergoers can download Galapro’s app to their own mobile devices and access subtitles in multiple languages, audio descriptions, closed captioning, and amplification during the performance. I haven’t been to a live performance in decades because, as a hard-of-hearing individual, not being able to follow a live performance is a major concern for me. However, Galapro promises to make live performances accessible to all. Most theaters and live performance venues likely have not heard about Galapro, and here is an excellent advocacy opportunity to let them know that the app exists by pointing them to The Shubert Organization and Kyle Wright if they are interested in finding out what is involved in bringing this cost-effective, mobile, and simple solution to their venues.

A crowded room with several presentation screens, an ASL interpreter, and captioning on the screens
One of the workshops | Photo by WID

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Words from our International fellows banner

Words from Our International Fellows

WID has had the incredible honor of working with some of the world’s most innovative young leaders in the disability rights arena. This page highlights our fellows from 2015 onward. To hear about the experience in the fellows’ own words, continue reading.

Amrita Gyawali

2018 Long-Term CSP Fellow from Nepal
During her time at WID, Amrita worked with WID staff to make 2 PSAs. Watch both below!

PSA #1: Independent Amrita

PSA #2: Employment Matters for Everyone

Roshan Samarawickrama

2016 Long-Term CSP Fellow from Sri Lanka

Mauot Anyang

2016 Long-Term YALI Fellow from South Sudan

Feri Gwata and Temitope Okupe

2016 Short-Term YALI Fellows from Zimbabwe (Feri) and Nigeria (Temitope)

Alieu Jaiteh

2015 Long-Term YALI Fellow from The Gambia
Video interview below:

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Workplace Pathways to Employment

There are various agencies and organizations that can help with your employment search. This content reviews secondary transition programs; post-secondary education programs; career fairs; internships; state departments of rehabilitation; and other community based programs. In addition, it reviews adjustments to existing programs, such as supported employment and customized employment.

Part II-Workplace Pathways to Employment (PDF)

Workshop

Workshop #7: Workplace Pathways to Employment (PDF)

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