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Deadly Discrimination: The Forgotten Impact Of Covid-19 On People With Disabilities

This article is more than 3 years old.

Disability rights are civil rights, and July 26, 2020 marks the 30th anniversary of the Americans with Disabilities Act (ADA). Similar to laws in other countries, it is significant civil rights legislation affording persons with disabilities legal protection from discrimination.

During the coronavirus pandemic, it is precisely these legal protections that should safeguard people. However, according to Marcie Roth, CEO of World Institute on Disability, “of the 43% of COVID-19 deaths attributed to congregate facilities, almost 100% are disabled people.”

At least 50,000 Americans with disabilities have died in the last 120 days without being on the radar. Those in nursing homes are referred to as ‘elderly,’ with ‘underlying conditions,’ or ‘vulnerable.’ These are euphemisms that avoid using the word “disability”. This diminishes and ignores civil rights protections for millions.


Why People with Disabilities are in Danger Right Now

Last month was the 21st anniversary of the Olmstead US Supreme Court decision that found two women discriminated against on the basis of disability and race. Since then, the Department of Justice clearly states civil rights must not be waived in a disaster.

COVID-19 impacts people with disabilities more disproportionately than other disasters, with devastating outcomes. Under “usual“ circumstances, people with disabilities are two to four times more likely to be injured or die in disasters, due to inadequate community-wide planning and access to emergency and disaster assistance. Black, Brown and Indigenous disabled people and others at the intersections of oppression comprise the vast majority of lives lost.

Disabled people and personal care attendants often lack adequate personal protective equipment (PPE). Workers are often encouraged to hide their testing results, or don’t get tested for fear of losing their job. This all adds up, exposing people with disabilities who may be reliant on others.

It’s “gross mismanagement” says Roth. “You don’t go into a nursing home because you are old. It’s not about age, you go because of stigma and because your community has failed to assist people with disabilities to live independently with adequate support.”

After 9/11 there were very practical challenges for people with disabilities. For example, the bus routes in New York City changed and disabled people couldn’t get about. Major corporations donated millions to American Red Cross and other traditional humanitarian relief organizations. According to Roth, that money didn’t reach disability led organizations serving disabled people who needed it most to maintain health, safety and independence.

Corporations were unknowingly participating in “Inspiration porn”, making their generosity look good, but without practical value. This disaster relief disconnect has continued in every disaster that followed, hurricanes Katrina, Sandy, Harvey, Maria, Michael, Florence, California wildfires, and other US and global disasters. Hundreds of thousands of people with disabilities have urgent COVID needs; their local disability organizations are once again left out of humanitarian relief resources to accelerate solutions.

Recent Disability & Disaster Town Halls collected lived experience of people with disabilities around the world. 633 people registered from 29 countries in six continents. 98% said that disability-led organizations didn’t have what they need to serve their communities. 100% believed disability-led organizations definitely or sometimes are left out of disaster relief funding from foundations, corporations and government.

In India, a quick shutdown limited the ability to reach people in need. Women with disabilities lack access to food and security - inaccessible tele-health means no reproductive healthcare services. Homelessness and sexual abuse of women is a significant problem.

In Uganda’s lockdown, people with disabilities are unable to access food. In the Bahamas, Hurricane Dorian’s aftermath compounds the lack of healthcare and access to supplies. Caregivers lack access to PPE. And in Pennsylvania 70% of COVID deaths have been in congregate settings. There is a lack of funding for relief and relocation services.

Disability-led organizations are experts in problem solving, and are always on the front line in the struggle to meet urgent needs and fill resource gaps during disasters. Yet they rarely receive government funding to continue operations, and lack bandwidth to compete for charitable disaster relief funding. Local disability expertise is mostly ignored by funders.  


Nothing About Us Without Us

To offer insights, and get practical results, disability experts need to be in charge. It doesn’t take a pandemic to upend the daily life of a person with a disability, “you are used to it on a regular basis,” says Roth.

Launching July 9th, the Global Alliance for Disaster Resource Acceleration was formed by disability-led organizations: World Institute on Disability, Partnership for Inclusive Disaster Strategies and Inclusiva to connect disability-led organizations with corporate and foundation resources for immediate impact in disasters. It’s designed to use lived experience expertise and disrupt exclusion and accelerate radical inclusion when it’s most needed.

The multinational pharmaceutical company Bristol Myers Squibb (BMS) is contributing resources. It’s using its own employees with disabilities as part of its corporate response. “Bristol Myers Squibb (BMS) is committed to inclusivity, equity and supporting people with disabilities both in the workplace and in our communities. We know there is a gap of resources available for the disability community when crises and disasters hit. That’s why we are pleased to join WID in making it a top priority to fill this gap.”

Funders and disability problem solvers join forces to build a match-making Alliance to improve disaster outcomes.  This long overdue system will rapidly match funders and resources on the supply side with disability expertise on the demand side. “Disability-led organizations have been screaming into the wilderness for access to disaster relief” says Roth. Now, we are creating a practical and creative solution for COVID and future disasters.

Personal Care Attendants wearing PPE, mental health support to counter social isolation and COVID-19 content in “plain language” would help people with learning and cognitive disabilities most. And all of us can increase our own awareness, education and commitment to disability rights by listening to and funding disability-led organizations.


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