Banner with text: COVID Blog: US Disability Benefits Applicants in 'Abyssful' Purgatory. Icon of speech bubble with WID globe. Background photo of a hand typing on a laptop computer and author photo with a magenta tint. Author photo of Sabrinah White, a Black woman with curly black and gray hair, smiling.

COVID Blog: U.S. Disability Benefits Applicants in ‘Abyssful’ Purgatory

by Sabrina White

The Social Security Administration (SSA)’s severely flawed disability determination/reconsideration process is having an even deadlier impact on persons with disabilities than usual. Granted, it is fully understood that the target populations for Social Security benefits are people who are retiring from work, and Persons with Disabilities (PWDs) experiencing either the beginning effects of no income due to the initial onset of disabilities, and/or who have experienced disability in the long term.  Among the several internal misapplications of statutes at the Social Security Administration’s Disability Determination Service (DDS)’s level, one error alone can be the ultimate determinant of whether persons with disabilities live or die, especially when facing imminent peril to the likes of the COVID-19 pandemic. 

In spotlighting these issues within the agency, one should note that there are two types of Social Security benefits, with two separate sets of rules in the disability determination process:

  1. Supplemental Security Income (SSI) for persons with disabilities who have little or no work history and no access to an income or resources; and 
  2. Social Security Disability Insurance (SSDI) for people who have a longer history of working who have become disabled.

Both of these determination processes have proven to be highly inefficient and painful for persons with disabilities, as well as unduly compound additional deficiencies brought on by a pandemic.  Even prior to the pandemic, applicants faced financial and medical dangers while waiting upwards of six months to never-ending years for an initial favorable/unfavorable determination, followed by up to four other appeals stages, depending on the state in which the claimant resides. According to a new report from the U.S. Government Accountability Office, from 2008 to 2019, nearly 110,000 people died while waiting for an appeal. 

A crucial flaw in the agency’s determination process presumes that claimants are able to rely on their families and communities for financial and medical support during the painstakingly lengthy determination and appeals process. For most applicants, this is not the case, as persons with disabilities generally start out at a financial disadvantage during the initial application process. If an individual does have some income or financial means to sustain themselves through the application process, they are likely to get denied still. They may get denied for SSI because they exceed the asset limits, which essentially state that if a person has more than $2,000 in cash or resources, they are ineligible to receive SSI benefits. If an individual either chooses or is forced to work while they await their benefits determination, they may be denied on the basis of Substantial Gainful Activity (SGA). This refers to a cap on the monthly income that serves as the agency’s threshold of disability – if an individual makes more than the limit, they are not considered disabled by the Social Security Administration. The algorithm makes no compensation for claimants whom had a higher earning power prior to becoming disabled who had to stop working due to their disabilities during the required 12-month period. Because of the higher perceived earning power, these applicants are often denied, even though the claimant was not able to fully meet their needs. 

Despite these algorithms, the agency then contradicts itself with special exceptions – the opportunity to have uncapped income can become available under their work incentives programs. One additional social construct of claimants is those that fall in the ‘gray’ area of ability to provide for a single-parent family household’s circumstance. The agency fails to take into account the actual impact of any court-ordered required Accounts Payable which fall under “outgoing income” – for example, child-support (cash support and/or medical), where the claimant doesn’t get to ‘enjoy’ nor use this portion of their income to their advantage. In each of these cases, a clear pattern emerges in which the administration focuses on heavily weighing resources, moreso than on helping the claimant. Even knowing that these criteria are circular and unrealistic, the agency’s internal representatives apply these systemically-oppressive criteria to a fault, as a part of their everyday job duties. This system is designed to the disadvantage and often, detriment of a disabled person. With the lengthy determination/appeals processes, disabled people often feel stuck in state of purgatory. 

The majority of persons with disabilities are people of color, and due to racism, including redlining, hiring and pay discrimination, and denied access to wealth-building, the African-American population holds the highest poverty and subsequently, homelessness rates in every state across the United States. Due to these factors and others, African-Americans are being disproportionately impacted by the COVID-19 pandemic – hence the death tolls previously mentioned from the U.S. Government Accountability Office’s report.  Rothstein’s “Segregated by Design” 17-minute video compilation shows in great detail how de jure segregation has maintained systemic and institutionalized oppression that could explain why persons with disabilities are deficient of assets and resources to sustain themselves and their families. Exploring eight key environmental injustices in unison provides unique clarity on how each of the individual environmental injustices are connected via domino-effect to the other(s) as follows:

  1. Landlessness                                 5) Hunger-in-America
  2. Poverty                                          6) Health Disparities
  3. Homelessness                               7) Educational Disparities
  4. Wealth/Income Inequalities          8) Mass Incarceration of African-American Men

One additional note for persons with disabilities during COVID-19 is that on state-level assistance and optional eviction moratoriums, it is technically per states’ ‘right-to-choose’ regarding enforcement of nationally declared moratoriums. Large numbers of persons with disabilities are more likely to face eviction, compounded episodic homelessness, compounded poverty, and/or raw poverty circumstances, all of which can be linked to the cycle-of-poverty identified in the landlessness phenomenon first proposed in Esman’s (1978) compiled report presented at Cornell University to the Rural Development Committee, where he framed the ‘landless’ and ‘near-landless’ terminology.  Landlessness was later revisited by Sinha’s (1985) compiled text stemming from Sen’s (1983) premise that landlessnesswas both a cause and symptom of chronic poverty, which espoused the situations and tribulations the landless are going through in connection to deficiencies in assets and resources. The Social Security Administration’s process requires disabled people to stay in the cycle-of-poverty, whether or not they receive assistance. As we collectively face the ongoing impacts of the pandemic, persons with disabilities will face increased landlessness and cycles of poverty, all while awaiting benefits that due to this flawed determinant system, may never come. 

It is clear that the cycle of poverty and by extension, the benefits determination process that holds persons with disabilities in the cycle of poverty, is not only painful, but it violates the constitutional right to life of persons with disabilities. As Rothstein posits in the “Segregated by Design” video, “And if it’s unconstitutional, then we have an obligation to remedy it!”

Documents referenced:

Esman, M.J. (1978). Landlessness and near-landless in developing countries, p. ii. Rural Development Committee. Cornell University.

Neuman, Lawrence W. (2011). Social Research Methods: Qualitative and Quantitative Approaches 7th Edition. Allyn & Bacon.

Picchi, Aimee. (2020). Almost 110,000 Americans died while waiting for a Social Security disability hearing. CBS News.

Rothstein, Richard. (2018). The Color of Law A Forgotten History of How Our Government Segregated America. Liveright. 

Rothstein, Richard. (2018). Segregated by Design.  Retrieved from https://www.segregatedbydesign.com/.

Sen, Amartya. (1983). Poverty and famines: an essay on entitlement and deprivation. Oxford University Press, USA. 

Sinha, Radha. (1985). Landlessness: A Growing Problem. FAO Economic & Social Development Series. No 28/F2720.

White, Sabrina. (2018). Dire Systemic Inequitable Domino-Effects of Landlessness: Mississippi the Worst-Case Scenario.  Dissertation.

About the author

Author photo of Sabrinah White, a Black woman with curly black and gray hair, smiling.

Sabrinah White, PhD is an Urban & Regional Planner/Environmental Social Scientist and speaker committed to reform efforts on environmental injustices and activism for our society’s much needed expeditious change under the looming disadvantageous impacts of global warming/climate change for marginalized, disenfranchised, and disadvantaged groups.  She is also a Person with Disabilities (PWD) who has challenged and championed Social Security Administration’s faulty disability policies, misapplication of statutes, and in-house minutiae at all levels of the appeals processes including federal Judicial Review for over 6+ years, and won as a Pro Se claimant.  Amongst her efforts in public service, she has also served as an AmeriCorps VISTA (Volunteer-in-Service-to-America).

Social Media Profiles & Blogs:

Facebook: https://www.facebook.com/LANDLESSNESS/

YouTube: LANDLESSNESSReform


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Banner with text: COVID Blog: Mental Health in the Time of Corona. Icon of speech bubble with WID globe. Background photo of a hand typing on a laptop computer and author photo with a magenta tint. Author photo of Kale Sastre, a white person with short brown hair, glasses, and a silver lip ring.

COVID Blog: Mental Health in the Time of Corona

By Kale Sastre

When I first heard about Coronavirus, it didn’t seem much different than other health scares I’ve lived through. I thought this would be a good chance to get some cheap plane tickets, though I was disappointed that St. Patrick’s Day events were cancelled. But once schools and sports shut down, I knew it was serious. Since then, people I know personally have gotten sick and even died. The in-person supports I depended on have been pulled out from under me. While this has been hard on everyone, it is particularly difficult on people with mental health conditions, including myself and my neighbors.

I live in an apartment complex for low income people with at least one diagnosed mental health disorder. The organization that runs this complex is a mental health community center . Organizations like this community center and housing programs that cater to low income, disabled individuals are absolutely crucial to us surviving – not only during a pandemic, but all the time.

For most people, the uncertainty we’re dealing with now is scary. For people with anxiety, it is terrifying, impacting what we can handle on a daily basis. Most people would agree that these times are depressing, but for those of us with depression it can feel overwhelming and unbearable. Our suicidal thoughts are skyrocketing while the world seems hopeless and our lives have lost many of their bright spots. While everyone is struggling to maintain a sense of normalcy, many people with mental health disorders are struggling to survive.

People with cognitive and intellectual disorders may not understand what is happening and why, especially without consistent, direct instructions and communication. People with social disorders are more isolated than ever, which can make it difficult to continue hard-won progress in maintaining healthy social relationships. People who struggle with instability in their mental health, including people with bipolar or borderline, report having a hard time gripping onto something to keep their lives safe and regular. Consistency is key for managing many of these disabilities, and we are in a time with very little consistency.

For many of my neighbors, the hardest thing about Coronavirus has been the closing of the community center. Since all of us in my complex live alone and many do not have jobs, the center has been a major source of socialization and productivity for residents, as well as for other community members. Going to the community center was a big part of many people’s routines. Routine can be calming and motivating, and helps keep people on a stable and healthy path. When our routines are disrupted, it is harder to have a positive attitude and to do the things necessary for our wellbeing. For some people with mental health disabilities, lack of routine can lead to a total breakdown. Coronavirus has left us without much of a routine.

The community center offers a virtual experience to members now that the building is closed, and the staff have been reaching out to members. Supporting organizations like the center makes a tremendous difference for people struggling with their mental health, especially right now.

Without supportive housing options such as is offered through this program, many people with mental health disabilities experience severe consequences, including homelessness. According to the Center for American Progress:

“People with mental health disabilities are vastly overrepresented in the population of people who experience homelessness. Of the more than 550,000 people in America who experienced homelessness on a given night in 2017, 1 in 5 had a mental illness. The proportion of people experiencing chronic homelessness with mental health disabilities was even higher—nearly 1 in 3.”

The chronic stressors around insecure housing have a strong impact on mental and physical health. Permanent supportive housing, a combination of safe, stable housing and supportive services for people with mental health and other disabilities, is widely recognized as an evidence-supported model for providing transformative support that leads to improved health and lasting housing stability. In a pandemic where people with disabilities are at higher risk of infection, this is an especially important accommodation.

For me, part of how I keep my mental health in a good place is by traveling and setting goals. Right now, most travel is indefinitely suspended, and many of the goals I have set for myself have had to be put on hold. I made a new list of goals specifically for the duration of the pandemic, but much of what I really want to do is postponed if not completely cancelled. Suicide risk goes up when distractions are gone and goals seem unachievable. Depressive states can seem never ending.

It is important to remember people with mental health struggles during these times, without using mental health struggles as an excuse to let virus transmission run rampant. More than ever, we need people to reach out to us. My friends who have played games with me online and who have offered to video chat with me help me to feel less purposeless and alone. I’ve been able to help my neighbors by walking them through how to connect online and by helping organize mini events on the property.

Check on us. Don’t just ask if we’re okay; ask how you can help. Help us individually but also support mental health organizations and mental healthcare access. Keep up with your legislators and show your support for disability rights, as well as initiatives that provide funding for long-term supports and services for people with disabilities, including permanent supportive housing. Funding for mental health organizations is especially crucial right now, as is affordable access to virtual mental health appointments. These resources can help people with mental health disabilities build and keep their stability and comfort, and even save their lives.

Links to articles and sites referenced, in order of appearance:

Center for American Progress; Lack of Housing and Mental Health Disabilities Exacerbate One Another, by Heidi Schultheis. November 20, 2018.

American Public Health Association (APHA); Housing and Homelessness as a Public Health Issue. November 7, 2018.

About the author

Author photo of Kale Sastre, a white person with short brown hair, glasses, and a lip ring, sitting in front of water and trees.

Kale Sastre is a disabled writer/activist/adventurer living (for the moment) in Chattanooga, Tennessee. She wants to bring awareness to the issues people with physical and mental health disabilities and chronic illnesses face through her own experiences as well as those of others.

Kale’s websites: ksastre.wordpress.com and themighty.com/u/kale-sastre
Twitter: @KaleSastre
YouTube: DZ Disaster


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Banner with text: COVID Blog: How the COVID-19 Pandemic has Exacerbated Pre-Existing Ableism & Difficulties in India. Icon of speech bubble with WID globe. Background photo of a hand typing on a laptop computer and author photo with a magenta tint. Author photo of Arundhati Nath, an Indian woman with shoulder length black hair. She is wearing a bright patterned top.

COVID Blog: How the COVID-19 Pandemic has Exacerbated Pre-Existing Ableism & Difficulties in India

By Arundhati Nath

India is the second-most populous country in the world with more than 1.3 billion people. According to the latest census conducted by the Government of India in 2011, only 26.8 million people with disabilities live in India. This is a mere 2.23% of the total population of the country, which is a hugely underestimated number. The World Report on Disabilities published by the World Health Organization mentions that around 15% of the world’s population lives with some form of disability.  

“At present, the Rights of Persons with Disabilities Act (RPWD), 2016 recognizes 21 categories of disabilities, which include blood disorders, acid attack victims and several other disabilities. If we count everybody in, even a very modest estimate of disabled Indians would be 10% of the total population, if not more,” says Arman Ali, renowned Indian disability rights activist and Executive Director of National Council for Promotion of Employment for Disabled People (NCPEDP).

The majority of India’s disabled population is facing huge adversity owing to the Covid-19 pandemic. Disability is often still seen as a curse in India and the needs of people with disabilities do not receive the mainstream attention that they rightly deserve. 

Locked Down and Left Behind is a recent report published by NCPEDP, summarizing the first hand, real-life experiences of disabled Indians during the pandemic. It has found that a staggering 73% of disabled Indians are facing severe hardship during the pandemic and the subsequent lockdown. 

“The basic requirements like procurement of food, medicines, and the ability to go from one place to another or get help have become very difficult for [disabled people]. People have lost jobs and livelihood options leading to a huge financial crunch,” Arman says. 

Many people with disabilities have more than one disability, including conditions like diabetes or hypertension. People with these disabilities have been impacted by the interruption in medical support services, like the collection of blood samples from home, which has been stopped due to the lockdown. There is a huge drop in the supply of blood in blood banks, affecting blood transfusions for thalassemia patients.

People with disabilities who regularly need catheters, caregiver support, cotton wool, urine bags, bandages, medicines, assistive devices, and medical care were badly affected. Lack of funds and the inability to physically travel to get these items due to the lockdown have made life very difficult and even dangerous for disabled Indians. 

As most disabled Indians work in the unorganized sector, their sources of income have completely ceased to exist during the lockdown. Some are the only breadwinners for their families, and often support elderly parents or other disabled siblings or spouses. 

A disabled Indian who was a respondent to the survey conducted by NCPEDP, said, “I’m a person with a disability and my income is Rs 750.00 (10.01 US$) per month. Though this is a small amount, I was able to earn more through commissions. But now that my office is closed, I have no source of income.”

Disabled people are always more impacted by discrimination, violence, abandonment, and abuse as they are often denied the tools, accommodations, and trust they would need to defend themselves, which leads to psychological stress and mental health problems. This is showing up in fear and violence in relation to the coronavirus as well. For instance, a family in the city of Raipur deserted a deaf-mute person by admitting him to a hospital for coronavirus symptons, furnishing a false residential address and contact number. In the eastern Indian city of Kolkata, a man killed his 48-year-old disabled son during a heated argument over the son’s refusal to wear a face mask. 

According to the report published by the NCPEDP, although some states of the country like Nagaland, Kerala, Tamil Nadu, New Delhi, Himachal Pradesh, Maharashtra, Goa, Assam, Jammu and Kashmir and Karnataka have taken some steps to help the disabled population in a few ways, there’s a lot more that needs to be done. 

“I think people with disabilities are the worst affected during the pandemic and the fact that there’s no focus on collecting information during any such disaster, makes the situation more difficult. We have no clue how many people with disabilities are tested COVID-19 positive, are in quarantine, or have died. There’s not even a dedicated and accessible national helpline for the disabled during this pandemic. In a situation where [people with disabilities] should have been treated as a priority, they’ve been forgotten, which is unfortunate” Arman says.

Links to articles and sites referenced, in order of appearance:

United States Census Bureau; U.S. Census Bureau Current Population.

Office of the Registrar General & Census Commissioner, India; Measurement of Disability through Census. 2011.

Hindustan Times; India’s disabled must have a fighting chance to achieve whatever they want. June 5, 2017.

World Health Organization; World Report on Disabilities. 2011.

The Government of India; The Rights of Persons with Disabilities Act, 2016.

National Centre for Promotion of Employment for Disabled People (NCPEDP) website.

National Centre for Promotion of Employment for Disabled People (NCPEDP); Locked Down and Left Behind. 2020.

The Print; Study finds 73% persons with disabilities facing severe difficulties during lockdown in India, by Revathi Krishnan. May 22, 2020.

Times of India; Family deserts deaf-mute as ‘corona patient’, by Cherrupreet Kaur. April 2, 2020.

Hindustan Times; Man kills 48-yr-old physically challenged son after he refuses to wear face mask. April 19, 2020.

About the Author:

Author photo of Arundhati Nath, an Indian woman with shoulder length black hair. She is wearing a bright patterned shirt.

Arundhati Nath is a full-time, visually impaired freelance journalist and children’s author from Guwahati in Northeast India. She writes about disability and human rights, development, women’s issues, healthcare, culture, the environment, wildlife and conservation. She has been published in The Guardian, CSMonitor, Aljazeera English, BBC Wildlife, South China Morning Post, Reader’s Digest and several others. 

Arundhati can be reached at natharundhati@gmail.com and her work can be viewed online at her website, www.arundhatinath.com.

Arundhati’s LinkedIn page

Arundhati’s Twitter profile


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Banner with text: COVID Blog: The Stutter Box - The Alchemy of Support Groups for Stutterers. Icon of speech bubble with WID globe. Background photo of a hand typing on a laptop computer and author photo with a magenta tint. Author photo of Emma Alpern, a white woman with shoulder length brown hair smiling.

COVID Blog: The Stutter Box – The Alchemy of Support Groups for Stutterers

by Emma Alpern

For many stutterers, support groups are a source of community and empowerment outside of the world of corrective speech therapy. In meeting with other people who stutter — often for the first time — members experience conversation without fear of judgment from fluent speakers. During the COVID-19 pandemic, though, the alchemy of the support group has been disrupted. These in-person groups have been replaced with virtual gatherings, but the medium is not always comfortable for people who stutter, who often struggle to articulate themselves through technologies like Zoom and who are accustomed to in-person community building.

In 1977, a small cohort of people who stutter in San Francisco came together to found the National Stuttering Project (now the National Stuttering Association). The idea was simple: To create a space for stutterers to speak to each other in the spirit of mutual aid and self-help. The organization published a newsletter and other materials, its founders responded to letters and phone calls from stutterers, and its members protested ableist representations of stuttering in the media, but its central offerings were in-person conferences, workshops, and support groups.

These stuttering spaces hit a chord. Now, the organization has over 100 local chapters; other organizations, like FRIENDS, SAY (the Stuttering Association of the Young), and NYC Stutters, also host conferences and groups by and for people who stutter.

I am one of three chapter leaders for the Brooklyn chapter of the National Stuttering Association, a thriving group that has met in a room at the YWCA for the past decade or so. It’s not a perfect room — the air conditioner is loud, and the door is glass, offering little privacy — but it’s central, wheelchair accessible, and, for an hour and a half every month, ours.

Before the meetings start, people trickle in slowly, sometimes observing the room from the sidelines and sometimes striking up conversations with the person next to them. Afterwards, we usually head to a local bar for a drink. Bookending the intense discussions in our groups, which grapple with questions about family dynamics, the sometimes damaging effects of speech therapy, and employment (people who stutter earn about $7,000 less per year than people who do not stutter), these moments are when we experience the bliss of stuttered conversation with people who sound like us, a rare thing in a mostly fluent world. In April, we had our first meeting over Zoom, pausing our in-person meetings due to the coronavirus. These side conversations and opportunities for intimate or even casual moments of bonding have become largely unavailable in our video chat era.

Phones are another common topic in our meetings. Practically all stutterers despise speaking on the phone: the poor sound quality makes our stuttered speech less audible, and phone conversations don’t allow for the non-verbal cues that many of us rely on. Maybe this is part of why our attendance during the pandemic has declined. Zoom, as one of my co-leaders put it, turns the laptop into “a stutter box … I sit in front of this box in my room alone, stuttering.” Many of the qualities of in-person speaking that we enlist to help us through, like gestures and quieter sounds, fall out of the bounds of video chat technology. Meanwhile, as we stutter on camera, we are forced to confront our face as we stutter — an uncomfortable proposition for many of us.

And the technology itself is not reliably available to all of our members, who may not have an internet connection or computer literacy. Although I appreciate the increased access that virtual meetings offer to people who cannot make their way to Downtown Brooklyn, a number of our members have struggled to join our virtual meetings.

Like the original National Stuttering Project, the stuttering community works to offer not only in-person support groups, but also online forums, advocacy, and publications. But in rooms like the one at the YWCA, we’ve nurtured a speaking environment that’s comfortable for people who find hostility and barriers in other conversations. In many ways, it’s the heart of what we do. Until these spaces return, we’ll have to make do with the stutter box.

Links to articles and sites referenced, in order of appearance:

Journal of Speech, Language, and Hearing Research; Stuttering and Labor Market Outcomes in the United States, by Hope Gerlach, Evan Totty, Anu Subramanian, and Patricia Zebrowski. July 13, 2018.

The Washington Post; For people with disabilities, doctors are not always healers, by Leana S. Wen. October 27, 2014.

The New York Times; Stutterer Speaks up in Class; His Professor Says Keep Quiet, by Richard Pérez-Peña. October 10, 2011.

Narratively; When You Talk Over My Stutter, You Steal My Voice, by Spring Kwok. February 19, 2018.

About the Author

Author photo of Emma Alpern, a white woman with shoulder length brown hair smiling.Emma Alpern is a copy editor and writer living in Brooklyn, New York. She has been a part of the stuttering community for about seven years, primarily through NYC Stutters and the National Stuttering Association. She’s written about stuttering for The Atlantic, Eater, and Vice, and has a chapter in the 2019 book Stammering Pride and Prejudice.


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Banner with text: COVID Blog: The Horros of the Nursing Home-Industrial Complex in Canada. Icon of speech bubble with WID globe. Background photo of a hand typing on a laptop computer and author photo with a magenta tint. Author photo of a white woman with jaw length white-blonde hair. She is speaking into a microphone.

COVID Blog: The Horrors of the Nursing Home-Industrial Complex in Canada

by Shelley Lynn Tremain

In Canada, no aspect of the COVID-19 state of emergency has demonstrated the egregious effects for seniors and younger disabled people of neoliberal austerity measures and government indifference to the lives of elders and disabled people more than the entirely predictable tragedy unfolding in nursing homes and long-term care facilities in the provinces of Ontario and Quebec, beginning in early March of 2020.

In May, as case numbers continued to grow, the provincial government of Ontario issued a call to the Canadian Armed Forces to assist with the dire situation in nursing homes and long-term care facilities throughout Ontario, following the lead of the government of Quebec, which had already done so a month earlier. By that time, the situation in these Ontario facilities had spun out of control, with a rising number of COVID-19 cases amongst both their senior and younger disabled residents and staff.

By June, close to 2,000 deaths had occurred in nursing homes and other long-term care institutions in Ontario, while more than 80%—that is, more than 6,000—of the total number of COVID-19 deaths in Canada by that time had occurred in such institutions, with nursing homes in the province of Quebec the hardest hit. By late April, more than 1000 of the 1350 COVID-19 deaths that occurred in Quebec were related to long-term care facilities. After months of escalating numbers, the Quebec coroner’s office called for a public inquiry into the COVID-19 deaths in these institutions.

Even U.S.-based newscast CNN, in a July report that focused primarily on the effective response to COVID-19 of the current federal government of Canada, drew attention to the large number of deaths that have taken place in nursing homes and other long-term care facilities across Canada, informing the American public and indeed the global community of the horrific conditions within these institutions  that COVID-19 has exposed.

The vast majority of COVID-19 deaths in Canada have occurred in for-profit facilities, leading to  widespread demands for the Canadian government to “take control of long-term care.” These demands have steadily increased since the release of a whistleblower report about six Ontario nursing homes—five of which are for-profit homes—filed by medical personnel of the Canadian military deployed in these facilities. Among the violations that these medical personnel cited were the following: cockroaches and rodents in some facilities; lack of personal protective equipment, lack of hygiene, and under-staffing in virtually all of them; inadequate cleaning and sanitizing of resident rooms; slow response to resident calls for assistance; dirty linen or no linen on resident beds in one of the facilities; and inadequate staff training with respect to infection control in many.

Should publicly funded nursing homes and other long-term care facilities be advanced as the solution to the decades-old crisis in these institutions, in Canada and elsewhere?

A recent segment on CBC’s The National compared the nursing-home system in Australia with the nursing-home system in Canada. While more than 6,000 people have died from COVID-19 in long-term care in Canada, only 29 people have died from COVID-19 in nursing homes in Australia. Australian nursing homes, both for-profit and government-operated, are subject to considerable government regulation and inspection. In short, living conditions are reportedly better in nursing homes in Oz, whether publicly or privately owned and operated.

Yet, even adequately staffed nursing homes that are well kept cannot be the proper response to the question of how societies should provide long term supports and services to seniors, elders, and younger disabled people. On the contrary, the nursing home-industrial-complex must be recognized as an institutionalized mechanism that contributes to the reproduction of ableism and ageism. Indeed, we should regard up-scaled regulation and renovation of nursing homes as a kind of gentrification of these apparatuses of power, gentrification designed to ease the minds of the community-at-large about the fact that it has removed sectors of the population from their homes and communities. In other words, we know that gentrification in all its forms, but acutely in the case of the nursing home, effectively leaves intact the apparatuses and the systemic injustices that continue to harm the people that these superficial changes are claimed to help. The removal of seniors and younger disabled people from their communities and society at large—that is, their segregation in nursing homes and other “long-term care” facilities—takes away from them the prospect of lives that they deserve to live.

The COVID-19 pandemic has shone a spotlight on the fatal consequences of these systemic injustices and many others. We must ensure that these deadly consequences spur on larger and more critical cultural discussions about the institutionalization of various constituencies, discussions that in turn must motivate significant social and political changes of the practices and policies that govern the lives of the disabled people, seniors, prisoners, immigrants, Black people, and other people who comprise these constituencies taken away from the community in the name of care and safety.

Links to articles and sites referenced, in order of appearance:

The Star, 82% of Canada’s COVID-19 deaths have been in long-term care, by Tonda MacCharles. May 7, 2020.

The Globe, How Quebec’s long-term care homes became hotbeds for the COVID-19 pandemic, by Tu Thanh Ha. May 7, 2020.

CBC News, Quebec coroner’s office orders public inquiry into COVID-19 deaths in long-term care homes. July 17, 2020.

Twitter thread in reference to a segment on CNN Live News, posted by Ian Hanomansing, @IanHanomansing. July 3, 2020.

CBC News, COVID-19: Majority of region’s long-term care deaths occurred in for-profit homes, by Julie Ireton. June 10, 2020.

CBC News, Military report reveals what sector has long known: Ontario’s nursing homes are in trouble, by Adam Carter. May 27, 2020.

CBC News, The National: Australia’s COVID-19 successes shine a light on Canada’s troubled long-term care sector, by Terence McKenna. June 13, 2020.

About the Author:

Author photo of Shelley Tremain, a white woman with jaw length white-blonde hair. She is speaking into a microphone.Shelley Lynn Tremain has a Ph.D. in Philosophy from York University in Toronto and was the 1997-98 Ed Roberts Postdoctoral Fellow at the World Institute on Disability and University of California at Berkeley. Shelley was the recipient of the 2016 recipient of the Tanis Doe Award for Canadian Disability Study and Culture and the 2017 recipient of the Tobin Siebers Prize for Disability Studies in the Humanities. She coordinates BIOPOLITICAL PHILOSOPHY, a philosophy blog that focuses especially on the underrepresentation of disabled philosophers in academic philosophy.

Link to BIOPOLITICAL PHILOSOPHY blog website


Would you like to write a blog post about your COVID-19 experiences as a person with a disability or a disability-led organization? Submit a blog pitch via this form.

If you are having technical issues or accessibility issues on this site, email wid@wid.org.

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GADRA Launch Event Transcript

From recording of the GADRA Launch event, held on Thursday, July 9, 2020.

>> Kat:

>> Kat: One moment, please.

We’re just connecting to Facebook.

>> Kat: All right!

Hello, and welcome everyone to the launch of the Global Alliance for Disaster Resource Accelerations.

I am Kat Zigmont, WID’s Director of Operations.

First, a few housekeeping announcements.

First, we would like to announce that we are recording this meeting.

It is also currently being streamed on Facebook live on WIDs Facebook page which is World Institute on Disability I’m happy to cut and paste that into the chat.

If anyone would like to visit Facebook page.

For starters, everyone has been muted.

If you would like captions You can put on captions within Zoom via the caption item on the toolbar.

Or for full page of captions you can go to the link that I will also paste in the chat right now.

Lastly, we do hope you will share and tweet about the Global Alliance Launch today. And We have some hash tags we’d love for you to use.

#DisabilityDisasterAlliance.

#AllianceForDisability.

#GADRAForDisability.

#GADRAforDPOs.

I will put those in the chat box as well.

That’s all the housekeeping we have today.

We’ll get it started with WID’s executive director and chief executive officer, Marcie Roth.

Go ahead, Marcie.

>>Marcie: Thank you Kat, hello everyone thank you for joining us we launch the global disaster for disaster resource acceleration.

I started focusing on the gaps in emergency preparedness disaster response and community resilience in 2001 during the 9/11 terrorist attacks.

I’ve been analyzing those gaps now for almost 20 years.

In the U.S. and globally.

And from inside and outside government as a person with a disability, as a disability community leader, as a government official and even as a funder, I have noticed that while there are many gaps, the most startling has been witnessing the massive outpouring of disaster relief from corporations and foundations as well as government funded response for humanitarian response.

And then the sustained lack of support reaching disability-led organizations.

This has been a repeated reality as the generosity has flowed from disaster to disaster, local disability led organizations stepping up again and again to support not only the people who they serve on a daily basis but providing tremendous support across their communities.

Most recently during the COVID-19 pandemic we have seen this has exacerbated even more significantly.

Local disability organizations, those led by people with disabilities have been working around the clock to address some of the most egregious systemic failures including those failures that, for instance, here in the United States have resulted in the unbelievable loss of at least 50,000 people with disabilities, at least 50,000.

People with disabilities in institutional, congregate, long-term nursing homes, whatever you want to call them, places where people have been denied their basic human and civil rights.

Those disability organizations are continuing to try to support those — keep them from being institutionalized.

Support those in their homes and in the community as we all navigate this very challenging time.

And it just became very clear that something very significant had to change.

Corporate and foundation funders have shared with us how difficult it’s been for them to identify the best ways to deliver support the local disability organizations doing work on the ground and they have asked for help.

And so the Global Alliance for Disaster Resource Acceleration have been WID’s effort to close the gaps by disrupting the cycle of exclusion for organizations working on the front lines without the resources they need to serve multiple  marginalized people with disabilities who are disproportionately black, brown, indigenous, LGBTQ in many parts of the world, women and girls, older people and almost always people who are experiencing extreme poverty.

When we first started putting the Global Alliance together we reached out to the two best organizations we could think of to help us lead this effort.

We invited the Partnership for Inclusive Disaster Strategies and Inclusiva who are the only two  organizations a full time mission of disability and disaster and the work that they have done in the U.S. and globally has been unprecedented and together the three organizations are welcoming everyone, disability-led organizations, corporations, foundations and our allies to work together to do something that I just have seen named by folks working in mutual aid and that is, solidarity not charity.

And this is very simply what it is that the Global Alliance for Disaster Resources Acceleration is seeking to do.

I’m going to turn back to Kat who’s going to talk about our most recent Town Hall meeting, it is very important to us that we find out whether or not this was — there was a need for an alliance such as this one among disability leaders and disabled persons organizations around the world.

And so we held these Town Hall meetings to listen and to learn from folks who might tell us more about what they think is most important.

So, in a moment I’m going to turn to Kat who is going to give us a recap and I will also share with you as we get started, she is going to talk about the folks who have been with us in the Town Hall meetings.

I cannot help but give a huge shout out that we have with us today at least 29 countries.

And we are absolutely thrilled to have folks from six of the seven continents, once again.

Still nobody from Antarctica.

We’re hoping that maybe some of those climate scientists might join us at some point.

Six of the seven continents.

I’ll now turn to Kat who will tell us more about what has led us up to this point.

>> Kat: Thank you so much, Marcie.

Yes, absolutely.

According to our Town Hall surveys we had 633 people registered from those 29 countries.

A lot of interest here.

When we asked about the need have disability led organization we found 98% responded that during this COVID-19 pandemic, disability-led organizations are just not getting what they need to serve their communities.

100% believe disability-led organizations definitely or sometimes are left out of disaster funding from foundations, corporations and government;

96% reported these Town Halls are useful to participate in disability disaster relief funding discussions; and to hear from these people.

93% reported they would like to be a part of an alliance between disability-led organizations and funders that could accelerate resources. And then we really wanted to dig a little deeper and figure out what are the resources that DPOs needed.

93% of the people said they needed funding or monetary assistance.

73% needed disability equipment or services.

71%, said that they needed preparedness training, capacity building, bias and rights training.

69% said that they needed personal protective equipment.

60% said they needed personal care attendant services, something that somewhat overlooked right now.

53% said that they needed technical assistance for remote work for those disability-led organizations.

47% needed legal assistance.

40% needed communication or equipment for remote work.

We thought this was extremely important information and it really spoke to the need that we aim to fill.

So we believe that the Town Halls have been extremely successful and we will be continuing them.

And with that, I would like to introduce WID’s Managing Director, Tom Foley.

>> Tom: Thanks, Kat, it’s a pleasure to be here today.

When we started down this road we reached out to some partners including our next guest.

When I reached out within 24 hours I heard back from him and he said, absolutely, we’re in, what can we do.

And that’s the kind of solidarity that Marcie talked about that’s going to close those gaps through the Global Alliance.

Without further adue I’m going to hand it off to our long time partner and Global Alliance member, Daren from external affairs with AT&T.

Take it away, Daren.

>> Daren: Can you all hear me? Let’s see here I’m trying to turn my video on.

Can you hear and see me?

Thanks so much, Tom, for the kind introduction I’m so happy to be here.

As Tom mentioned my name is Daren I’m with AT&T’s California external affairs as a director.

And I’m really excited to be here this morning for the launch of this critical initiative.

We all know COVID-19 has brought tremendous financial instability to so many people in our California communities and across the world.

Demand for assistance in human services like food and shelter has increased dramatically.

AT&T California has stepped up to support California organizations and organizations quite frankly across the nation and in the world to assist marginalized and vulnerable needs in times of need.

Now more than ever before it is important to ensure that people with disabilities have access to essential services that organizations like WID, the Partnership Inclusiva can continue to operate to serve this important community.

We’re proud to provide $10,000 contribution and be part of the Founders Circle and the Global Alliance for disaster resource acceleration.

Across California AT&T has contributed more than $3.5 million to community-based organizations that are providing relief to residents from underserved communities, front line health workers, public safety groups and small businesses that a have been impacted by the COVID-19.

With AT&T support community organizations and organizations like WID have been able to provide shelter, food and other assistance to people with disabilities in their time of need.

I want to applaud WID, the Partnership and Inclusiva for recognizing the need to recognize this Alliance, ensure people with disabilities continue to thrive in this new and crazy world we’re living in so thank you for letting me a part of this really important morning and day.

Thank you.

>> Marcie: Thank you so much Daren, congratulations on the birth of your child.

>> Daren: Thanks.

>> Marcie: During Hurricane Maria we were also grateful for the telecommunications resources provided by AT&T to deaf and disabled Puerto Ricans and disability-led organizations.

And we appreciate AT&T’s leadership at the Founders Circle member of the Global Alliance for disaster resource acceleration.

We’re excited to tell you more about the Global Alliance, and I am absolutely thrilled to have alongside us, two organizations that have really been leading globally.

Right now I’m going to introduce Germán Parodi from the Partnership for inclusive disaster strategies.

Who is also joined by Shaylin, they are the codirectors of The Partnership.

We’ve been working together since hurricane Maria.

Germán is going to talk talk about what we’re going to be doing.

Germán?

>> Germán: Thank you so much.

Thank you, Marcie.

Welcome all.

As Marcie as well explained as well as Daren, thank you for joining us today.

Disaster exposes the weaknesses throughout preparation procedures. Our previous two Town Halls as Marcie eloquently explained, people with disabilities across the world and organizations supporting them traditionally have a lack of access to the traditional funders.

Now we aim to engage with our partner organizations across the globe to provide direct services, we have identified as our all services have identified and now we are establishing a Founders Circle that makes up of corporations, organizations, and DPOs – we’ll be talking about that a little bit further today.

What is most critical is that we center Black, Brown, Indigenous and other people of color across the world. Throughout our work one of our core tenets in the alliance is a genuine commitment to seek, welcome, and support multiply-marginalized people with disabilities who are being most impacted in disasters.

This pandemic has demonstrated a global need for unity, we aim to pursue this through the Global Alliance by matching corporations and foundation resources directly to disability led organizations that are meeting critical needs in their community.

People with disabilities are not vulnerable, they are not victims.

We are going to shatter the myth by empowering, centering, and truly making sure that the funds get to those providing for the needs in their community.

People with disability die two to four times more than people without disabilities in a disaster.

This pandemic and the lack of global response due to many countries, not taking heed to the warning has created a global disaster impacting most, people with disabilities impacted most and this impact is death.

Our Global Alliance will aim to shatter the myth and make sure that people with disabilities are at the table, making decisions and through that need funding.

We welcome you all.

Thank you for your support and encourage you to talk more today on how to become members of the Alliance.

It is most critical that moving forward between now and 2030 when the next pandemic comes we are all certain we will survive it.

Thank you.

>> Marcie: Thank you, Germán.

Very simply, The Global Alliance will be disability-led organizations and funders together in disaster to deliver rapid, targeted assistance to people with disabilities in disaster impacted communities.

When Germán and I and Shaylin began talking about building this Global Alliance, we knew that there was one other organization that absolutely had to be at the able as we begin to build this Global Alliance.

I first met Carlos Kaiser many, many years ago when we were doing work in preparation for the launch of the united nations global platform for disaster risk reduction and what was to become the 2015 framework for disaster reduction, which was a huge step forward in the sustainable development goals launch.

And the framework addresses the comparative inclusion of people with disabilities throughout the disaster risk reduction processes in every corner of the globe.

So, I first met Carlos early in that process and we became fast friends and mighty partners in radical inclusion.

Now we’re going to — I’m going to turn to Germán who is going to join me in welcoming Carlos.

Germán.

>> Germán: Thank you, Marcie.

Marcie, Carlos, we joined Marcie last May in Geneva at the global platform for disaster risk reduction.

After a week spending time with Carlos Kaiser, out of Chile, he is the Executive Director of Inclusiva, his work, determination, and passion for people with disabilities throughout disaster relief solidified our understanding that globally, once we can survive in disaster, we will be able to live in what we call blue skies. — at that convention which — Carlos will talk a bit more of the work that was done.

It is global passion to ensure that survival and particularly people with disabilities it’s a beacon for us all.

I am honored and pleased to announce Carlos Kaiser.

>> Carlos:  Thank you for this so marvelous and touching  introduction.

I have to say that I have met Marcie as she told.

Then Germán and Shaylin and I’m so proud of being working with them.

Let me tell that you could be something personal but for me they are family.

Because they are the most ethic people I ever met.

People that are working beyond any impairment any problem, just to save lives and to bring back the dignity that sometimes society is denies people with disabilities.

I started working on disaster risk reduction after the 8.8 earthquake that happened in Chile that was devastating Tsunami. My country is the most seismic country the world.

Even more seismic than Japan.

Chile alone produced more than 49% of the seismic center in the world.

So every time it’s trembling here and every time we are facing several problems.

That’s why I started working because in my country there was a huge lack of implementation of human rights of people with disabilities in this country.

Inclusiva is one of the two along with partnership for Inclusive disaster strategy. We have been working in different countries, we have specific disaster risk reduction in Latin America and Caribbean.

We have been working for instance with the — 2015 plans.

We have been working with different agencies from the United Nations with American organizations institutions.

Also have to tell you something huge that happened 20 minutes ago.

Finally after four months of struggling hard, our health minister has announced that no people with disabilities is going to be left behind Chile from the COVID-19.

They are, yes, start working on infrastructure that was not good.

They had all protocols we gave them and they are enforcing them, it happened 20 minutes ago.

National broadcasting system announced it

It was possible because more than 3006 organizations banded together we were in front of the congress people.

We were in front of our authorities and we are doing whatever we can and sleeping no nights, no sleeping nights.

Why do we need this help?

Why do we need funding?

We have to keep on going because we are far from reaching our goals.

The world is not inclusive, it’s a dangerous place if you have disability.

So we need to go forward, we need all this help and we’re going to do it together because here we are not looking for alpha males, not looking for toxic way of working, we are working because we believe human beings are human lives.

Thanks for being part of it.

Thanks for inviting me to be part of it.

>> Marcie: Thank you very much, Carlos.

We are thrilled to hear your good news.

Wishing so much that was the case here in the U.S. and many other places around the world and your leadership as a beacon for the rest of us to follow.

I’m now going to turn back to Kat so that we can give folks an opportunity for any questions that you might have.

>> Kat: Thank you, Marcie, we have gotten a few questions and the main question that we keep receiving is, how do you become a member of the Global Alliance!

We’re thrilled that there is such interest.

And I — we’ll talk a little bit about this later but I shared a link to a form to fill out that will let us know how you would like to be involved.

I notice about five or six of you have already completed the form so thank you so much.

That’s how you can connect with us.

Another question I see here is from Chen from Bangladesh, she wants to know how Indigenous Women’s Network can get involved with this alliance.

You can get involved with the alliance in the same way, join — follow the link and when do you that fill out that you’re an organization that wants to be involved, in what way do you need resources, do you have resources, do you want to be part of the decision-making process as we figure out the best way to make this mechanism work.

Then are there any other questions?

Those were the main questions I saw for now please keep putting in your questions in the question and answer box or chat we’ll keep a note about them.

We’ll have a few more opportunities to hear from people.

You’re welcome!

>> Marcie: Thank you very much, Kat.

This is Marcie speaking again.

I am noting that we have folks who are telling us that this is the first time they have ever joined Zoom.

People are very excited to be a part of this event.

I don’t know that we’re going to have an opportunity for audience participation by voice.

But certainly there’s going to be much opportunity moving forward because we will be building this together.

Many people have asked, what exactly is going to happen.

How exactly is this going to work?

And in the true spirit of nothing about us without us this is going to be built by the folks who are committed to solidarity not charity.

This is going to be built by folks who are going to indicate that they have an interest in being a part of all of this and we will identify some working groups for people to put their interest towards and we will build from there.

We are very fortunate to have some incredible partners who have joined us in this launch and who are making it possible for us to move forward and open the Global Alliance to everyone who wants to be a part of it.

And in just a moment I am switching out my background.

Here we go.

I am now going to take the opportunity to begin the roll out of the Founders Circle.

And I am going to turn to Shaylin from The Partnership for Inclusive Strategies.

Who is going to tell us a little bit about what the Founders Circle is.

>> Shaylin: This is Shaylin, thank you Marcie and thank you everyone and welcome all.

Thank you for joining us today for the launch of the disaster — the Global Alliance for disaster resource acceleration.

We’re very excited to be joined with many partners around the world.

As we have been talking today what is the Founders Circle works to build the Global Alliance for Disaster Resource Organization, brings together disability led organizations, disability leaders, foundations, corporation partners all interested in building a Global Alliance that shifts the power of resources into the hands of us on the ground organizations led by people with disabilities.

The Founders Circle is open to Global Alliance members committed to supporting disability leadership and marginalized communities in disasters.

And together we will work to shape the process that will accelerate resources to that has been often ignored and left-behind communities.

Founders Circle will work together to build this alliance, building the plane as we fly it in disaster time.

And establishing connections bring others in, leveraging relationships and accelerating those connections to shift the resource power into the hands of disability-led organizations.

Doing the hard work to meet the needs of people with disabilities in their communities.

We encourage you to join us in building this Global Alliance and building the plane as we fly it by joining the Founders Circle.

There’s a link as Kat just mentioned, please fill it out, let us know how you would like, it will be available on our websites afterwards disasterstrategies.org and WID.org and on our social medias and beyond be on the look out for the information that will be to follow.

Please join us in the Founders Circle and help us build this Global Alliance so that we can bring the resources to our communities and best serve our people and save lives.

>> Marcie: Thank you very much, Shaylin.

Marcie speaking again.

Now we are really excited to continue introducing some of our first Founders Circle members.

We had the opportunity earlier this year thanks to our good friends, Joyce, who introduced us to a really wonderful, passionate leader who has been doing amazing work in disability inclusion in the corporate workplace.

And we had the opportunity to have a discussion and she said, let’s see if we can figure this out, boy, has she ever!

So I am thrilled to introduce to you Tina Marie Duff who is with Bristol Meyers Squibb, she is representing Bristol Meyers Squibb, their employee resource group, DAWN, and Bristol Meyer Squibb Foundation who are all key members of the Founders Circle and will be very active in helping us to shape where it goes from here.

Thank you for everything, Tinamarie.

>> Tinamarie: Thank you for that wonderful introduction.

Not on screen right now I am joined by my colleagues from the Bristol Meyers Squibb foundation, Captain Grimes and Vicky as well as the Bristol Meyers corporate communication team.

They are here as well as many of our Bristol Meyers Squibb worldwide leaders that support my team.

Bristol Meyers Squibb is committed to inclusivity, equity and supporting people with disabilities.

Both in our workforce and in our communities.

I am the global lead of DAWN which stands for differently abled workplace network.

DAWN is an employee resource group working to address the needs of individuals with disabilities in our workforce, with our patients and in our communities.

The DAWN team is over 2,000 members.

We sit on four or five continents now.

In 30 different sites and we have 20 striving chapters around the world.

At Bristol Meyers Squibb we value all dimensions and aspects of diversity and contributions it brings to our BMS business and performance worldwide.

As a disability advocate both inside Bristol Meyers Squibb and beyond the four walls, I have seen the gap that is left behind in the communities after crisis and disaster hits.

I’ve seen it with COVID, during this COVID I pulled together several of my colleagues from various organizations and companies both private sector and government vector.

It included chief accessibility officers and HR executives, I shared my concerns that — and my fears that once again with this new pandemic the needs and the voices of individuals with disabilities was going to be left behind.

And I felt that as companies that we should have an aligned voice amplify our voices and our efforts and have a single objective, that’s actually how I was introduced to WID.

So — that’s how the story starts, right?

I’m really happy to share that the Bristol Meyers Squibb foundation and the DAWN, differently abled workplace network, has combined our resources and we have partnered to contribute $25,000 for total of $50,000 to the efforts here.

We’re really excited to be on this journey with you and see everything that the WID team and Global Alliance for disaster resource acceleration is going to be doing.

My team around the world, my chapter leads around the world, some of us are joining us today, they’re really anxious in working to be part of this partnership I’m sure many have already signed up to the link that you provided in the chat.

Thank you very much for all that you’re doing for people with disabilities.

Thank you for recognizing the gap in those that are often left behind in trying to work in advance of the next crisis and in the next disability so we can address this sooner.

Thank you.

>> Marcie: Thank you, Tinamarie for everything.

Thank you for your leadership and your partnership.

We are really overwhelmed with the opportunities for reaching out to and involving other corporations, other foundations and most particularly disability-led organizations as our partners as we move from word into action.

An important time, not just for COVID but because we know that other disasters will follow.

And one of the most important aspects of the Global Alliance is the fact that we are building for now and for the future. Thank you to everyone from Bristol Meyers Squibb for your partnership.

We are also very excited to be partnering with another of our Founder Circle members, KP from Benetech is someone who we’ve been working with for a while now.

And Benetech has been doing fabulous work globally in bringing together technology and humanity.

The work that they do we are convinced is going to help the alliance to optimize the power of technology as we reach into most impacted communities across the globe.

Introduce KP now we will welcome his remarks.

KP, thanks.

>> KP: Thank you Marcie, thank you very much, good morning, everybody or good evening, good afternoon.

My name is KP I am VP of labs at Benetech.

Benetech is organization that is 20 years old this is our anniversary actually this year.

We’re a software organization we build software for social.

We’re based in Silicon Valley notion is we can use Silicon Valley smarts for social good.

That’s what we do.

We’ve been doing that for 20 years.

And when I met Marcie earlier this year, I think it was like a meeting of minds because she was interested in disaster recovery and what happens.

This is before COVID.

What happens to people with disabilities during disasters.

Immediately after that COVID hit and we saw tremendous impact that it had on the safety net and literally, it’s like all of the vulnerabilities in the system got exposed.

We’ve been working, developing software platforms to help not for profits and BPOs around the world actually address this shortcoming.

The three lenses if you like which we use to look at anything is inclusion, equity and justice.

I’ve heard those terms being referred to by others.

We’re in violent agreement with you.

What can we really do.

And our goal is to bring the best possible systems and develop the tools so that you can actually go and deliver your services out to the community.

Specifically for the Global Alliance on disaster resource acceleration we’re looking to build a platform which you can actually help to respond, to understand what are the needs which people with disabilities have as well as the organizations, what their needs are and to be able to respond in something like real time.

Because it has to be quick and it has to be appropriate.

You need to be working with really good information when you’re making these decisions on the fly so to speak.

That’s what we bring to the table.

It’s an honor and a pleasure to be part of the Alliance and we’re really looking forward to working with all of you to make sure that this is an absolute success.

Thank you, Marcie, for thinking of us and thank you for including us.

It’s an absolute pleasure to be here.

Thank you.

>> Marcie: Thank you so much, KP.

This is Marcie speaking again.

We are grateful for your visionary leadership Benetech does great work that I think folks will be learning more about as we move forward.

And we’re excited for where we go from here.

We have had many questions from folks who are asking how to become a part of the Founders Circle and again, by completing the form that Kat has shared that will give us the initial invitation that you’re interested in being part of the Alliance.

And we will be accepting members of the Founders Circle through the end of this year, 2020.

I’m going to pause again and turn back to Kat to find out if we have any other questions.

>> Kat: We do indeed, thank you, Marcie.

So the first question is some April, she works at the empower Tennessee, a center for independent living.

She asks, are CILs already members of the Alliance?

Because the alliance seems to be consistent with IL — independent living philosophy and so the answer to your question April is, absolutely independent living centers can be part of the Alliance.

Independent living centers are disability-led organizations you are exactly who we think is appropriate to be getting some of these resources.

Another question is, providing good examples of projects that serve as good models of what the alliance is striving for that have contributed to building capacity for lasting change in disaster disability-led response and recovery.

Marcie, could you provide any examples?

>> Marcie: I’d be happy to, and that’s a great question.

I’m thinking that Germán and Carlos and Shaylin may also have some good examples as well.

Some of the great examples that I have seen and been a part of have been those in which funding, sometimes, but sometimes more than funding folks have needed immediate assistance with things like disability personal supplies, with durable medical equipment, assistive technology and in many of the recent disasters The Partnership for inclusive disaster strategy has played a very  significant role as has, for example, our dear friends and partners, —

Germán, do you want to talk about some of the support that has been provided and generally up until now that support has been provided to individuals and we will now be extending more to bringing together the funders directly with the other organizations.

How about some great examples from The Partnership.

Checking on Germán again.

Maybe we — are you there?

— (inaudible)

>> Marcie: Sure.

Some examples The Partnership and I think you could probably talk a lot about how you worked with folks during Hurricane Maria.

And then more recently in response to Hurricane Dorian.

In the Bahamas.

And working with local disability-led organizations to assist them to provide services to and for their communities.

>> Germán: Thank you, Marcie.

In 2017 a week after the passage of hurricane Maria, Shaylin and I, a group of disability-led responders were deployed.

We were given a directive very simple, find people with disabilities, find ways to help people with disabilities, connect people with disabilities with DPOs.

Simple.

I was born and raised in Puerto Rico, I moved after my disability in 2004, but I visit often. I grew up with an understanding of hurricanes.

Hurricane Maria we must all recognize really what a paradigm shift we are extending on the impact hurricane will have in our hemisphere.

The frequency and implementation of a CAT 5, is much larger than they were 20 years ago.

I had tears running down my eyes understanding why often, often, seeing devastation that the hurricane did on my island.

But more on the lack of preparedness.

More on the misinformation like registry created for a sense of something that coming that never would.

We were there for three weeks.

We quickly sent to Marcie Roth’s connections, we met with FEMA person there on disabilities for the island.

With the other — and other DPOs.

Where they had not gone.

We were delivering essential to over 80-year-old — an elder who had not spoken to her daughter in the states in three weeks because Irma, which had been a couple of weeks before.

When we landed to make sure that we brought satellite phones, she connected with her daughter, that same week that lady went — went to the states to say thank you.

By week two we were concentrating our efforts out again in the areas that were not being reached where people with disabilities live.

It was not hard to find; once we asked, we found.

The problem we found is that the big humanitarian response do not have a directive to assist people with disabilities.

To make sure that every door that someone gets assistance.

By week three, we had covered more than half of the island towns, we had helped with other DPOs, too, similar work in shelters to activate through the college.

Independent living was being further empowered by assistance of the Partnership with that not being reached.

We there were for three weeks afterwards because of the connecting with DPOs of the government a network was created that really led to now most recently after the earthquake in January that people with disabilities that do not have equipment to evacuate were helped directly.

To make sure that happened.

That the shelters were fully accessible.

Connected to when the shelter was open so they could go check

Recommendations were received.

Now there were problems, of course.

The similarities were very similar in the Bahamas.

We were deployed three times to — we covered an island, Grand Bahama,  city of Freeport, went to the capital, Nassau, and went to the most impacted islands.

Again, false sense of security with registries.

Again, DPOs that were connected to the government asking how are people who are deaf and hard of hearing getting the notices?

These were state commissioners, if you will.

Not getting response from their emergency management.

No understanding of the DME, durable medical equipment. no understanding of the medicine that is live sustaining like things for diabetes.

We were able to assist with over coordinating with partners over 40 pallets of supplies.

And still donations of wheelchairs to be given out.

And now with our partners with our goals and with the university of the Bahamas, disability compliance office, Erica Brown, they are working with their emergency management office and right now they are preparing emergency kits that are developing by people with disabilities.

To be spread throughout the islands, with disability input, ahead of response.

That’s just one of the examples of how we come in through their invitation, we work with the local at all times and we help make sure that once we exit they continue receiving the resources and technical assistance to be empowered and ready and prepared for the next disasters.

>> Marcie: Thank you very much, Germán, for sharing those great examples.

Carlos, would you like to talk a little bit about the work that Inclusiva has done.

>> Carlos: Of course.

We have been facing different  disasters here in Chile, because it’s a very disaster prone country.

First trend we started was trying to very concept of inclusion — besides the authorities in the very beginning they knew nothing of what we were talking to.

They were clueless.

So we created and established a network with national emergency office, like Chile in FEMA to get the idea of a scope.

But we – very big difference, they are more like advisors than a team that can respond to their emergency.

They have no other powers required.

The thing is that we establish a disability technical group with them.

With the national disability service, too.

And we started working with local government to prevent things and establish mechanisms.

But then we faced emergencies.

We first tried to reduce the risk then the emergencies came.

That’s why we started — first of all we certified ourselves in the methodology that came from the United States of America in Spanish it’s called, CERT that is about the community response teams.

We start working on an inclusive version of it.

We create emergency disaster kit for people with disabilities, inclusive ones.

Not just for people with disabilities.

Our emergency kits for everyone so that’s why they have inclusive measures of people with disabilities that are not left behind.

When we faced in the north of Chile we have great floods and landslides, because north of Chile is the driest desert in the world.

So having floods in the driest desert of the world that makes Sahara look like a jungle, the thing is that it was tremendous — it has real impact on population, we were there creating teams, coordinating, within our government.

We create procedures.

We started teaching them those procedures.

We work with the fire departments and teaching them Inclusiva response.

Even start training the national police.

And apart from this, we were facing those things as I say before with local governments.

And coordinated with organization of people with disabilities themselves.

The thing is that Inclusiva is behind the scenes organization in the sense that we are not deploying our flag when we are working on site.

Because our strategy is that the current people that get the responsibility of doing this, they got promoted and they got, you’re doing great.

Because the way Chile mind works, I don’t know if you know the country, but if an elected official is not getting all — all the attention they’re going to be jealous.

They try to extract things instead of cooperate.

Now on COVID-19 happened kind of the same.

We started working — with all people, making follow up, giving them data.

One of the problems they have is they don’t have hard data.

So we provide them with hard data.

We know where people are, we know what they need and because — not because we think it’s because we talk to them, it’s because we made research on site.

It’s because we have information that people themselves are providing to us.

As simple as that.

Last thing I would like to say is that we are working with different networks.

But we serve in a very weird way.

Instead of working from organization of people with disabilities, we start working from organizations that deal with disaster reaction.

Then we connect the dots, we introduce people together.

But first we start building capacities.

Because people with disabilities themselves knew little about disaster and — risk reduction and humanitarian knew nothing about disabilities.

We put all of them together and that’s our strategy and we are sort of advisors, we provide services, we give funding to them because we look where the funding is.

We distribute it and this way everyone is working together.

We are not saying like, Darth Vader, Luke I’m your true father.

We are saying we are here together.

That’s why I’m happy to be here.

One last thing.

Marcie Roth is very famous in Chile at least in my town, we love Marcie as part of this work.

Marcie when she was officer from FEMA, a top officer there, she got the time to visit my town to teach us many valuable things.

Marcie, my town is better because of you.

Thanks for this.

>> Marcie: Thank you so much, Carlos.

We’re all better because of you.

So glad to be working together on all of this.

Examples of previous opportunities to build capacity have been in the absence of any sort of consistent support.

And these are very perfect examples of how these organizations have had to try to bring together some immediate resources where there was no existing systematic way to match the needs with those who wanted to be of assistance.

The alliance brings us from that less consistent approach to one in which we can all build in ways that are going to improve outcomes for those local disability-led organizations and for their whole community as a result of that.

Now I’m going to introduce three more of our Founders Circle partners.

These are folks who have been working alongside in building out our capacity to be successful in bringing the Global Alliance out into the communities that we all want to be serving.

Our first partner is with a wonderful consulting company who we have been working with, she’ll tell you a little bit more about the valuable contributions that she is bringing, someone who I have had the great pleasure of knowing for many, many years and who is now taken on some pretty exciting leadership roles and who is bringing some of her very valuable expertise to the world as we launch this alliance. It is absolutely wonderful to be able to introduce Andraéa LaVant, Andraéa is going to tell you a little bit about something we will be doing next. Thank you for joining us.

>> Andraéa: One second.

My computer, my video is of course acting — I know what it is.

>> Marcie: While you’re fiddling I will say Andraéa, is often seen on Sundays with — she invites all of the crip camp campers once a week to have fabulous global camping experience.

And oftentimes when she appears on the screen on Sundays she is wearing fabulous camper attire.

There she is today.

Andraéa.

>> Andraéa: Thank you, sorry, of course, technical difficulties when you need them.

Incredibly excited to be with you all today and as Marcie said, I have known her for a long time and as a black disabled woman, I’m really excited with a physical disability, I was excited about the launch of the Global Alliance for Disaster Resource Acceleration.

Not only excited but honestly relieved.

Because having lived experience living independently for over half of my life, I know that the torment of what will happen in disasters is always something that’s pretty plaguing for me.

And I feel certainly feel that way about my disabled peers across the global.

When I learned about this opportunity, I was really excited to be part of it.

I run a strategies and communications firm that we focus on corporate and nonprofit support around helping people speak disability and so really thinking about disability engagement, and so I am going to be brief.

I just wanted to share about one opportunity that we have working with this amazing group recognizing the power of meaningful conversation and how meaningful conversations are more often than not the impetus for change.

And so, my team and I at Lavant consulting are excited to support what will be the alliance’s first ever Twitter chat that is going to be set on August 13th.

The goal of the chat are to raise awareness about the creation of this amazing group and then identify key areas of concern in disability community disaster preparedness.

And then provide an avenue for disabled people to share their experiences and preparing for disasters.

And so it’s our hope that this will inform all of us moving forward to be able to hear from the community, engage the community and have an archive of — we know that so much research has been done on the front end and this will be a time to continue to amplify more voices, which I know on my own work storytelling is so significant to really hear more of the stories in the form of what you do.

You’ll be hearing more about the chat, including the time, the hashtags that we’ll be using and other details in coming recently create.

Hope you’ll join us.

Hope that you will promote it across your networks.

Yeah!

>> Marcie: Look forward to optimizing all of the tools for engaging people and at the same time as we talked about earlier today, looking at ways for communicating with those who don’t have access to these tools.

We have folks on here today who are telling us this is the first time they have ever used Zoom.

Someone who is going to get very involved moving forward who is from Bhutan.

And this is telling us this is their first experience with Zoom I’m sure there are folks who are kind of clueless about Twitter and this will be an opportunity for some folks maybe some who are on the panel right now as we speak.

>> Andraéa: I love it!

>> Marcie: Yes.

We want to be able to reach people in many different formats.

>> Andraéa: We’ll have a lot of fun.

>> Marcie: Yes, we will.

Thank you so much.

>> Andraéa: Thank you.

>> Marcie: Welcome to the Founders Circle our very important work ahead.

>> Andraéa: Yes, thank you all.

>> Marcie: Thanks, Andraéa.

Two of the masterminds who we have been working with since this whacky idea was first hatched several months ago, we reached out to Tari Hartman and Tari was very excited to join us.

And so we will hear from Tari then Tari will share — will introduce Derek, who we worked with for many years but Tari brought Derek in to this and we’ll have each of them talk a little bit about what they are bringing to the incredible finish.

Tari — I’m sorry.

Derek then Tari.

Maybe both together.

I’m sorry. I’m not sure who’s going first

>> Derek: Thanks, Marcie.

Hi, everyone this is Derek Shields.

First I’d like to thank Marcie and Shaylin and Germán and Carlos for your leadership.

Truly your mentorship to me.

I’m new to disaster response and as an ally, I’m working behind the scenes with the team.

Over the past two weeks perhaps I’ve connected with you and one of the things that I’m looking forward to doing with you all is help establish, when we talk about accelerating resources, I want to help establish acceleration of networking to connect us faster.

Importantly learn from each other how we can best do that.

So one of the roles I serve in as director of the National Disability Mentoring Coalition, I spend a lot of time talking about the importance of networking to find mentors.

One of my favorite quotes comes from a cofounder of the World Institute on Disability Ed Roberts, he said, “we can support each other, we can learn from each other”.

I think this is one of the founding principles of the Global Alliance and I appreciate that being baked into what we do.

Importantly we can’t do this without you.

Importance of networking and finding ways to network with people in your communities that maybe use different tools than some of us are using we need your guidance.

And to do that, to really leverage the power of pure mentorship in creating what we look at, a global mentoring circle.

We know this works in other communities and we believe that by building this global mentoring circle that disability-led organizations can in fact design and then disrupt the exclusion that occurs.

So I look forward to bringing that to the team and outreach and communication and support services.

And I appreciate Tari Hartman bringing me along for this journey.

Thanks, all.

>> Marcie: Tari, you and I go back many, many years and there are many, many stories to tell.

It will be really fun some day to tell this story as well.

We are very grateful for all that you have brought to this initiative.

For all of the great people who you have brought into the mix as we have been on this journey.

Thank you, Tari, I’ll turn it to you.

>> Tari: Thank you, Marcie.

It’s an honor to be here.

Derek, thank you very much for your leadership, but also thank you very much for the logo.

And the logo speaks to the different colors and velocity and energy that it takes in building this alliance.

I know you’re thinking the world doesn’t need another acronym right now, and what is GADRA.

But GADRA and the alliance is a circle for a reason.

It’s the only shape that doesn’t accentuate one partner over another.

It’s not a triangle, it’s not a square.

God knows it’s not a Pentagon.

But everybody carries part of the responsibility.

And the success of the Alliance is going to be learning and sharing and knowing stories.

Now, as a non-disabled ally, this is not my story to tell.

However, it’s my responsibility as a non-disabled ally, advocate, accomplice to, learn other stories about disability and then as Johnny Cash sang about, know when to fold them.

–Besides this cameo appearance as I refer to my colleagues with disabilities.

But part behalf we’re doing is changing the narrative.

Now everyone has deferred to Hollywood as owning the narrative on disability.

Which is awful.

In the United States and probably in other countries we’re 25-26% of the population and only 2% shown in media.

If people with disabilities are shown at all in media, it’s perpetuating myths and stereotypes of being the victim.

And not coming from a place of power.

So, changing the narrative is crucial in what we’re trying to do.

And that’s going to take many shapes and many forms across the delivery platforms.

We’re going to be asking you your stories.

Because we’re striving the Global Alliance to the true north of disability leadership.

So there will be a parallel narrative.

One narrative is not even reporting thousands, tens of thousands of people with disabilities in nursing homes, congregate living.

That’s one part of the narrative to make sure that we advocate with our siblings and making sure those voices are elevated.

The other part of the narrative is counter to that that it’s not either or.

People with disabilities are not victims.

People with disabilities are innovative much, problem solvers, every single day.

So communicating that to the media that is going to amplify the fundamental difference of why this alliance is needed and why it’s needed now.

Whether it’s Forbes article that happened this week so that corporations and foundations can read about what’s going on and not box disability in a corner.

To know that their investment in the traditional humanitarian relief causes, does not reach people with disabilities.

It doesn’t reach disability-led organizations.

So in this communications progress and in joining the alliance we invite to you name it, frame it, claim it as Andraéa said, your stories are critical to what is happening.

We want to assure you this is not U.S.-centric, not U.S.-centric based.

That the foundations and corporations that will be part of this AT&T, Bristol Meyers Squibb, employee resource and your foundation and Benetech, are really have proven track record of inclusion and of amplifying social justice and not just to check a box on corporate social responsibility.

It’s authentic.

It’s real.

And we welcome you to help us build it and fly it as Shaylin said.

Thank you very much for being here.

We look forward to learning more from you on our upcoming Town Halls and we have only just begun.

Thank you very much.

>> Marcie: Thank you very much, Tari.

Truly appreciated and, yes, we are going to name it, frame it — claim it, name it, frame it and sustain it.

Let’s now as we are in our last couple of minutes, we’re going to hear a little bit more from Shaylin about what happens next.

I’m sorry, go to hear first from Moya, who is with WID and then with Shaylin partnership as we talk about where we go from here then we’ll be wrapping up.

>> Moya: Thanks for the introduction.

I’m going to tell you how you can get more involved with the alliance, seeing lots of questions in the chat and comments and on social media asking, yes, this is great, how can I get involved.

There is going to be variety of ways you can engage with the alliance.

It’s really important that you have the opportunity to be as involved as you want to be.

We want barrier to entry to be low because we know that especially people of color and people with disabilities around the world are often left out of the decision making, left out of the planning and we’re certainly not trying to replicate that.

One of the ways to get involved is by joining a workgroup.

Couple of you asked, what are the workgroups.

We’re still figuring it out as Shaylin said we are building this plane as we fly it.

But we’re going to sort of see what skills and what desires you all have to offer and then form workgroups around that.

We’re anticipating that we’re going to need a lot of help getting the word out to funders.

Going to need help getting in touch with DPOs and DLOs, disability led organizations around the world.

We’re going to need help figuring out how do we make these matches.

What stuff do people need.

What stuff our partners have to give so there’s lots of moving parts to this.

We invite you to join a workgroup.

And if you let us know in the application form which is in the chat, I’ll grab that for you in just a second.

That will give us a better of sense of what we should reach out to you for and be contact to talk about next steps.

In addition if you at this point are super overwhelmed with the disaster, we know how that goes.

It’s okay if you can’t be involved in everything.

We’re looking for you to engage when and where you can so we’re here to support you in whatever way works best for you.

So, thank you everyone.

Looking forward to working with you all.

>> Marcie: Thank you very much, Moya.

If you like the background, you can thank Moya for this and so many of our other fabulous graphical designs, Moya really makes WID and the Global Alliance terrific.

Appreciate that.

Now finally we’re going to hear for a moment about the global Town Halls and Shaylin is going to tell us what comes next then we’ll wrap up from there.

Shaylin.

>> Shaylin: Hi, everyone this is Shaylin from The Partnership.

Thank you all for joining us today for the previous global Town Halls that you have joined us for or may have seen afterwards, if you haven’t seen them I encourage you to check them out on WID.org on and our social media sites and beyond.

Our upcoming event will be August 27th as our global Town Hall has been extremely well received and highlight the needs of disability-led organizations globally, will be an opportunity to engage with each other and have an open floor discussion as I know some folks are interested in talking today and we are sorry we’re running out of time.

The next global Town Hall on August 27th at 12:00 p.m. eastern time, New York time, will be available for all to join us and I also want to give a friendly reminder about the Twitter chat that will be right before that on August 13th.

Two upcoming events August 13th with the Twitter chat and Global Town Hall will be Zoom platform also broadcast on Facebook and beyond on August 27th 12:00 p.m. New York time.

>> Marcie: Thank you very much, Shaylin.

Carlos, Shaylin, Germán and I thank you so much, the working group who has been leading this, thanks to everyone for all of your fabulous contributions, our Founders Circle, the folks who have joined us today from 27 countries.

We are so grateful for everyone’s fabulous contributions to the work ahead.

I would be remiss if I didn’t share one of the comments from Jen Wolff who said, this is true community power.

We are absolutely thrilled that this is what folks are taking away from us.

Please join us in disrupting exclusion of disability-led organizations and accelerating radical in conclusions to get rapid disaster relief to disaster-impacted communities.

Solidarity not charity.

Germán, Carlos, any parting words?

>> Shaylin: This is Shaylin.

Just to say thank you all for joining us as disability-led organizations who do on the ground work and responding to the needs of our communities.

We also find that funding becomes the barrier.

If we don’t have the resources ourselves to do the work to help our people, we are stuck ourselves.

And we know there are funds out there, there are great organizations wanting to give to great disability-led organizations and others doing the great work this alliance works to bring us all together to do just that.

Join us again, thank you for coming today.

And we hope you join us in our Global Alliance in bringing the power to our community all over the globe.

>> Marcie: Thank you very much, everybody.

We appreciate you joining us in this launch.

We’ll see you again August 13th and August 27th and do fill out the application form to join with us and move forward.

Have a great day.

Be safe.

Thanks to everyone.

>> Marcie: Thank you.


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Banner with text: COVID Blog: In Uganda, COVID-19 restrictions are limiting access to sunscreen, critical for the survival of people with albinism. Icon of speech bubble with WID globe. Background photo of a hand typing on a laptop computer and author photo with a magenta tint. Author photo of an Indian woman with chin length dark hair. She is smiling.

COVID Blog: In Uganda, COVID-19 restrictions are limiting access to sunscreen, critical for the survival of people with albinism

by Priti Salian

It’s been several weeks since Barbra Anying went out to sell shoes in Lira, a city in northern Uganda. When non-essential businesses were prohibited to function due to the COVID-19 lockdown, she used up all her savings to sustain herself and her family, and is now unable to re-launch her modest mode of living.

The lockdown also banned transport, which put a pause on her trips to Kampala to buy shoes. In addition to losing access to her source of income, Anying relied on her trips to Kampala to obtain high SPF sunscreen from a nonprofit organization, critical for her skin as a person living with albinism.

“When I reached her with sunscreen, she had several sores and a few lesions on her skin,” says Pat Larubi, a disability rights activist and a volunteer with the nonprofit, Source of the Nile Union of Persons with Albinism (SNUPA). Anying, a local leader for a group of about 40 people with albinism in Lira, is one of the 500 persons with albinism who received sunscreen from Larubi during the lockdown.

In June, Kampala-based Larubi drove 800 kilometers, covering 15 districts in Uganda on his motorbike, to deliver high SPF sunscreen to SNUPA, sponsored by the UK based charity, Advantage Africa.

Sub-Saharan Africa is reported to have one person with albinism for every 2000 to 5000 people. Owing to the lack of melanin in their skin, as well as lack of access to sunscreen, nine out of 10 people living with albinism in Africa die due to skin cancer before their 40th birthday. In Uganda, many of them depend on a tiny number of non-profits for their supply of free sunscreen, as the products available in the market are imported and unaffordable to hundreds of people with albinism who live in poverty.

“Despite being a part of the country’s Disability Act, there is hardly any protection of the rights of people with albinism by the Ugandan government,” says Peter Ogik, co-founder and executive director of Jinja-based SNUPA. The Disability Act clearly mentions the free or subsidized provision of skin protective creams by the government to persons with albinism, but it is not being done yet. For a population of 44 million, Uganda has just a handful of dermatologists, Ogik says.

Ogik had co-founded SNUPA in 2013 to support people with albinism like himself. Over 1,000 of its members regularly receive sunscreens, long-sleeved shirts, lip-salve and broad-brimmed hats for protection from the searing sunlight. Monthly skin cancer screenings and a camp every quarter in Jinja to remove pre-cancerous lesions on those who might have developed cancer were being held until the lockdown paused all activity.

To remain connected through the lockdown, SNUPA regularly conducted conference calls with its members to learn about their setbacks. “We played songs on radio and TV for our community to keep their spirits up,” Ogik says.

During those calls, Ogik heard that five of SNUPA’s members suspected having developed skin cancer and a few more reported their pre-cancerous lesions to be worsening. “There was a huge outcry, as no one was able to reach the SNUPA dermatologist based in Jinja,” he says.

To offer relief, SNUPA’s dermatologist has since been on home visits for cancer screening. All cancer referrals are being sent to Kampala for treatment in taxis hired by SNUPA. In addition to that, Larubi volunteered to distribute sunscreen to many people with albinism who cannot travel due to the lockdown.

Personal visits revealed that living with albinism made life harder during the lockdown. A number of people were unable to go for work due to the transport ban. No access to sunscreen to protect their skin meant walking wasn’t an option. Some others had to shutter their small run-from-home enterprises selling non-essential merchandise. Therefore, a few people put  their kids to work as domestic helpers, to eke out a living, until they could find something to do again. For a person with albinism, it is doubly challenging to find work due to the discrimination stemming from the myths about them being ghosts or supernatural beings. In Uganda, particularly, a lot of people complain of not being able to find work as the employers are “scared” of their appearance.

Larubi found a lot of people going hungry and said that public relief initiatives have not yet thought of people with albinism. “When you can’t put food on the table, how will you think of taking care of your skin?” says Larubi.

“During one of my visits, thanks to a donation, I was able to buy posho, beans, cooking oil, washing soap, sugar, and salt for a few families,” he adds.

Ogik says that SNUPA would continue its relief work for as long as possible. “But it’s time the government proactively supports our community,” Ogik says. Especially with the Disability Act in place, the government must fulfill its promises, because the disabled people of Uganda cannot continue to wait.

Links to articles and sites referenced

Source of the Nile Union of Persons with Albinism (SNUPA) Facebook page

Plos One: Beliefs about people with albinism in Uganda: A qualitative study using the Common-Sense Model

About the author

Author photo of an Indian woman with chin length dark hair. She is smiling.Priti Salian is a Bangalore-based journalist who has reported from India, Germany, and Uganda on human rights, social justice, development, and culture, with a strong focus on disability, gender, and ageing in the recent past. Her byline has appeared in the BBC, the Guardian, National Geographic, Devex, CNN, and many others. Her website is www.pritisalian.com and her recent work can be found at pritisalian.contently.com.

Link to Priti Salian’s LinkedIn page

Link to Priti Salian’s Twitter page


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Photo collage of Judy Heumann and Joan Leon from a photo taken in the early years of WID in the 1980s. Loose cursive font with text: Judy & Joan.

New video series: Judy & Joan

WID is excited to announce a new series of video exploring WID’s history, titled “Judy & Joan”! For our first video, we asked our founders, Judy Heumann and Joan Leon, to tell us about what led up to the founding of WID in 1983, early work of WID, and their vision for disability-led organizations leading disability research and policy globally.

Link to transcript


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Transcript: Judy & Joan, episode 1 – The Founding of WID, pre-ADA

>> Hi, everyone.
My name is Kamilah Martin-Proctor, and I am on the Board of Directors of the World Institute on Disability.
WID is creating a series of videos about our history as one of the first disability policy and research organizations that is actually led by people with disabilities.
I personally live with multiple sclerosis.
And we were able to catch up with two of our founders, Miss Judy Heumann and Joan Leon to talk about what led up to WID’s founding in 1983 and what happened in the years leading up to the passage of the
ADA, the Americans with Disabilities Act in 1990.
And we can’t wait to share all of the incredible stories they told us. Here’s a sneak peak!
>> Judy: Honestly, I don’t remember everything that we did, that would be unfortunately a big lie if I said I did.
>> [laughter]
>> (audio description) Judy and Joan, a series on WID’s history. Operationalizing inclusion and leading global disability rights since 1983.
>> Judy: You know, there were a number of things aligning at that point.
You had the evolution of the independent living movement.
We started in ’83, you have the ten CILs that were starting like in 1979.
And that movement was talking about the importance of the voices of disabled people and influence and control and policy was a little bit being discussed.
And we knew all the people that were in the independent living movement because we were in the independent living movement.
>> Joan: We came to work in Sacramento as change agents, that’s why Jerry Brown brought Ed in, and that was my understand of what joining Ed was all about.
We were going to continue the work we had started at CIL but on a larger stage.
At the state level and always impacting the federal level.
We were there for two terms of Jerry Brown’s administration.
We accomplished a lot.
In the last year of his administration we decided to bring in our big gun, which was Judy.
>> Judy: I had left the Center for Independent Living and had gone to work briefly for the State Department of Rehabilitation.
>> Joan: We were fighting in rehab with other people at the federal level who kept saying — thought — thinking they knew better than we did about what people with disabilities wanted and needed.
And we just felt that the voice of the disability community was lost.
We decided we wanted to start our own organization.
We wanted — we were thinking of something like a Brookings Institute on disability, as I remember it.
>> Judy: We wanted it to be a disability-led organization like the model of the CILs.
Because while there was a lot of research going on that was being funded by federal agencies, there was nothing that was focusing from a disability perspective.
>> Joan: That was a big priority, you know.
We were going to hire as many people with disabilities as we could, as we could find.
> Judy: As we had money!
>> Joan: Who could do the work.
And we were going to have all kinds — people with all kinds of disabilities and we were going to give them all kinds of reasonable accommodations, and we were going to do the research to enable the voice of people with disabilities to be communicated on all the issues.
We had gone through 504, we knew all of the problems of 504 and what it left out.
We were talking about all the programs that we were intent on developing and we wanted to improve the whole disability benefit system.
It was independent living.
It was international.
>> Judy: You know, even in the name though I remember in the beginning there was a discussion of whether or not we would use the word “World”.
I felt really strongly about using the word “World” because one of our major areas was independent living, personal assistants.
And we had very much been looking and working internationally on it.
And a couple of other areas.
So we adopted using the word “World.”
>> Joan: You know our board chair — our board thought that that was just, just too much.
That we had more than enough to accomplish without putting the world “World” in.
But we were adamant.
Judy indeed was one of the strongest voices.
But Ed had also just recently been awarded his MacArthur grant.
And I think that led him to be more and more interested internationally.
>> Judy: I was also doing a fair amount of traveling, both internationally and domestically with the ADA and I was traveling a fair amount to Europe and to Japan and other places for the work that we were doing.
>> Joan: I was more interested in research, because I knew that we weren’t making any progress at all on the Hill in Washington, because other groups would come in with all this data about disability from their perspective.
And we didn’t have data.
And that told what was really happening with people with disabilities and what people really wanted.
So we had to do our own research.
And to me that was one of the most important — that was the most important part of WID.
>> (audio description) Judy & Joan: More coming soon!

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Banner with text: COVID Blog: Is Your Local Government Including People with Disabilities in Developing and Reopening Plans? Icon of speech bubble with WID globe. Background photo of a hand typing on a laptop computer and author photo with a magenta tint.

Is Your Local Government Including People with Disabilities in Developing and Implementing Reopening Plans?

by Bob Goldstraw

“Only the vulnerable will be at risk. Your ‘only’ is my everything.” That was the last post that April Dunn put on her Facebook page. A fierce advocate for the rights of people with disabilities in Louisiana, Ms. Dunn died from complications of COVID-19 on March 28 at age 33. She was a senior coordinator in the Governor’s Office of Disability Affairs. Born with fetal alcohol syndrome and cerebral palsy, Ms. Dunn knew well that while not all people with disabilities are at greater risk for complications or death from COVID-19, she was among the many who were.

Unfortunately, Governor Edwards didn’t get to benefit from the thoughtful guidance that April Dunn would have no doubt provided him as he developed his plans to reopen Louisiana. It’s certainly reasonable (and smart) to include those so disproportionately affected by this pandemic in developing and implementing these phased plans. And as states and communities around the country begin to return to some new version of “normal”, the mantra “Nothing About Us Without Us” remains as relevant as ever. Getting input from the disability community must not be an afterthought, considering that their guidance will inevitably form the cornerstone of any effective, safe plan that benefits everyone, disabled or not.

Like the city I’ve called home for the past 25 years, Washington, DC, many other jurisdictions have developed reopening plans around three stages or phases. In the process of developing its plans (as I write this we’re still in Phase Two),  DC Government reached out to a broad range of stakeholders, including the city’s 80,000 residents with disabilities and those who advocate on their behalf.

But not all jurisdictions are actively seeking to include people with disabilities in this process. What does your state, city, or county stand to lose or otherwise get wrong by not including people with disabilities in this planning? The short answer is a lot. We are now uniquely positioned to help our cities or towns reinvent themselves by planning for success and accessibility. We can reopen in a way that makes them smarter, safer, and more inclusive. Three decades after the signing of the Americans with Disabilities Act into law, people with disabilities continue to exercise their resourcefulness and resilience. They come up with novel ways around barriers, both physical and attitudinal, which in 2020, shouldn’t be there in the first place. Their uniquely creative problem-solving skills must be made use of in developing every jurisdiction’s pandemic reopening plan.

As Alice Wong stated in a recent interview, “…my hope for coming out of this pandemic is that we don’t return to the status quo. Many don’t realize that ‘normal’ was actually not great for a lot of people. Just because all of the nondisabled people go back to work—or to Burning Man, or to Coachella—that doesn’t mean we should stop thinking about accessibility.”

And so, as schools, restaurants, government offices and businesses around the country are reconfigured and begin their phased re-openings, local governments need to seek out and heed the input of people with disabilities. In doing so, these communities will implement a smarter, inclusive reopening process that takes into account everyone’s needs.

Communities will succeed by working to shrink the digital divide while ensuring that telework as a job accommodation and telemedicine are widely available. Communities will succeed by ensuring that the technology used is accessible to people who are deaf, hard of hearing, blind, or low vision. Communities will succeed by ensuring that public transportation, on-demand rail and paratransit systems are operating efficiently. Schools and students will succeed by making sure that Individualized Education Plans (IEPs) are given a second look, as many kids have lost out on critical class time and supportive services during months of school closures. We will all succeed by reopening in a way that doesn’t put those at most risk for serious illness or death due to COVID-19 in greater danger. And we all succeed when we communicate and implement all of this in ways that are accessible to everyone, including people who are deaf or hard of hearing, people who are blind or low vision, and people with developmental and other disabilities.

We have a unique opportunity to reinvent how we run our states, cities, and communities and how we communicate with our residents. I hope our local government officials are enlightened enough to recognize that for many, social distancing has been a luxury. Leaders need to aggressively seek out the wise guidance of people with disabilities as they plan and implement this new “normal” in a way that benefits everyone, without excluding anyone.

Links to articles referenced

Office of the Governor, Louisiana: Gov. Edwards Announces the Passing of April Dunn

Government of the District of Columbia: Phase Two

ADA National Network: Celebrate ADA30 and ADA Anniversary

Esquire: ‘Normal’ Was Actually Not Great for a Lot of People

Pew Research Center: Disabled Americans are Less Likely to Use Technology

Job Accommodation Network (JAN): Telework

Partnership on Employment & Accessible Technology (PEAT): Digital Accessibility

Education Week: How to Handle IEPs During the Coronavirus Crisis? Some Expert Advice


About the author

Photo of author Bob Goldstraw, a white adult man. He is wear slightly tinted glasses and a blue sweater.Bob Goldstraw is a writer, editor and disability policy and communications consultant.  He served on the staff of the former Presidential Task Force on Employment of Adults with disabilities under President Bill Clinton, and for more than a decade, held the role of web content manager for the former federal website, Disability.gov. Bob is a member of the National Disability Mentoring Coalition and is also a patient-family advisor to Ascension Health, the largest Catholic nonprofit healthcare system in the United States. He lives in Washington, DC with his husband of 25 years.

Bob Goldstraw’s LinkedIn page


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