COVID-19 as Disability Genocide:
How society fails disabled people during disasters
A conversation between Marcie Roth and Julia Watts Belser
July 1, 2022
Table of Contents:
Why should disabled people live in our communities instead of institutions?
Julia: Can we talk about the advocacy work you do? Your work lets others know about how people get treated in places like nursing homes and institutions. Your work shows society how awful it is to live in an institution. You fight along with other disabled activists to get people out of institutions. You work to make services and supports to help people live in their own homes and communities. Can you tell us more about that?
Marcie: Nursing homes are terrible places for people to be. This is a huge problem for older adults in the US. But people don’t talk about how the problem comes from disability discrimination. You don’t go to a nursing home because you’re old. You go because you have a disability. You go because your community doesn’t have what it needs to help disabled people keep living there. You go because you can’t stay safe and healthy in your community.
More than 95% of people living in long term care facilities – places like nursing homes and institutions – have disabilities. That is more than 9 out of every 10 people who live there. In the first 2 years of the pandemic, more than 200,000 people in long term care facilities have died from COVID-19. Those are all people with disabilities. Most of them are also Black, Indigenous, or other People of Color. They faced discrimination because of their race and their disability.
This is a genocide. Genocide is when people in power try to kill a lot of people in a certain group. The goal of genocide is to kill every person in that group on purpose. Genocide happens because people in power discriminate against these groups.
Some don’t like that I use the word “genocide” to talk about disabled people and COVID-19. They say “People with disabilities in nursing homes didn’t die on purpose. Nursing homes couldn’t help that lots of people died from COVID-19.” But I’m not so sure about that.
Nursing homes have completely failed. They failed to keep the people living there safe. They failed to stop COVID-19 and other infections from spreading. I don’t want to blame people working in nursing homes. Nursing home staff are overworked, and they don’t get paid enough. They try their best, but they don’t get enough help to make a difference. This isn’t a problem nursing home staff can fix. It is a problem with the nursing home system.
Julia: For years, disability activists have fought to change that system. We’ve fought for people to get what they need to stay in their communities. Can you say more about that push to change the system?
Marcie: Policy-makers usually don’t even pay attention to the nursing home problem. But even when they do, they ask, “How do we take nursing homes, throw more money at them, and make them better?”
But there is no amount of money that could make nursing homes work. It’s a broken system.
Whenever I talk about this problem, someone always says, “Let’s face it, some people need that kind of care.” But, actually, they don’t! Places like nursing homes, institutions, and prisons don’t help people. They treat people terribly. They fail people. And because of how nursing homes work, they will keep failing people.”
We need housing that is accessible and that people can afford. We need good home and community based services (HCBS). We need to pay the staff who support disabled people a fair wage for their work. We need the tools to stay healthy and safe. We need the assistive technology to have the freedom to live how we want to. We need chances to work and save money.
This is a problem about our rights. And more importantly, this is about justice. We shouldn’t have to fight for what everyone else has. Get rid of the things that keep us from living in the community. Give everyone the chance to have the money they need to live. Listen the most to the voices of people whose rights keep getting taken away. Make space for their leadership
Edited by Lucy Child, Amanda Chu, and Julia Watts Belser
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“COVID-19 as Disability Genocide: How planning for emergencies fails disabled people during disasters – a conversation between Marcie Roth and Julia Watts Belser.” Plain Language Translation by Reid Caplan. Disability and Climate Change Public Archive Project. July 1, 2022.
