COVID-19 as Disability Genocide: Structural Failures in Times of Crisis
Marcie Roth in conversation with Julia Watts Belser
Marcie Roth (she/her) is Executive Director and Chief Executive Officer for the World Institute on Disability, and the founder of the Global Alliance for Disaster Resource Acceleration. Recently named by Forbes Magazine to their inaugural Fifty Over 50 Impact List, Marcie has served in executive leadership roles for disability advocacy and public policy organizations since 1995. From 2009 to 2017, she served as Senior Advisor to the Federal Emergency Management Agency (FEMA) Administrator, where she established and directed the Office of Disability Integration and Coordination. She was recently appointed to the US Department of Health and Human Services National Advisory Committee on Disability and Disaster.
Julia: Marcie, you’ve been working to call attention to the brutal impact COVID-19 has had on disability communities—and to challenge some of the social policies that have made disabled people more likely to die during the pandemic. Can you tell us more about the disproportionate toll the pandemic has had on people with disabilities?
Marcie: The toll of this pandemic on people with disabilities has been catastrophic. Most of the people who die from COVID-19 have a disability. They might not identify themselves as disabled. Lots of people will describe having heart disease as a chronic health condition or an underlying condition or a comorbidity, for example. But those folks all qualify for protections under the Americans with Disabilities Act.
Julia: That’s such an important observation, and it’s one that gets left out of a lot of mainstream political analysis. When we don’t recognize or name certain experiences as disabilities, it makes it harder to recognize the impact the pandemic has had on this community. And it means we’re missing a chance to tap into some of the protections that disability advocates have fought for – the legal protections and the social obligations.
Marcie: That’s right. People with disabilities often get described as vulnerable, old, fragile, frail—all these emotional terms. And when it comes to COVID-19, the media often doesn’t even mention disability. Instead, we hear about people who “have underlying conditions.” We’re often not even identified as people with disabilities, as people who have specific, protected rights.
Julia: I’d like to ask you about that in the context of your own advocacy. Like so many disability activists, you’ve been working tirelessly to call public attention to the catastrophic situation in nursing homes and other institutional settings, and to push for systems and supports that allow more disabled and elderly people to receive quality care in their own homes, in their own communities. Can you tell us more about that work?
Marcie: Nursing homes are terrible places for people to be. This is a crisis for our nation’s older adults. But what often gets overlooked is that this is a crisis about disability discrimination. You don’t go to a nursing home because you’re old. You go because you’ve acquired a disability—and because your community has failed to put the supports and services in place that you need to maintain your health, your safety, your independence, and your dignity in the community.
Recent statistics show that 96.3% of all people in long term care facilities have disabilities. As of January 2022, more than 200,000 people in long term care facilities have died of COVID-19. Those are all people with disabilities.¹ And most of them are multiply marginalized Black, Indigenous and other People of Color.
This is a genocide. Some people recoil when I use that word and say, “This is not an intentional elimination of a whole group of people.” But I’m not so sure about that.
Nursing homes have utterly failed. They’ve failed to provide safety for their residents. They’ve failed to manage infection control. I don’t want to place blame on individuals who provide care. Nursing home staff are overworked and underpaid and put in nearly impossible positions, despite their best efforts. This isn’t an individual problem, it’s a systemic one.
Julia: For years, disability activists have been calling for the total transformation of these systems, demanding a different approach to care that keeps people rooted in their communities. Can you say more about that push for systemic change?
Marcie: When politicians and policy makers do actually acknowledge our country’s care crisis, they often 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 that model work. It’s a broken model. There is not enough lipstick on the planet to make that pig look good.
Whenever I talk about this issue, someone always says, “Let’s face it, some people need that kind of care.” But, actually, they don’t! Nursing homes, long-term care facilities, the whole carceral system—that is a terrible way of serving human beings.
It’s a failed approach. It has utterly failed.
We need accessible and affordable housing with high quality home and community based services, provided by people whose work is valued and who are well paid. And we need the tools and the assistive technology to maintain health, safety, independence and dignity, along with opportunities to work and build wealth.
This is a rights issue, and more importantly this is an issue of justice. We shouldn’t have to fight for what everyone else has. Eliminate the barriers to living in the community. Eliminate the barriers to economic justice. Center the people most affected, provide tools and resources, and make space for their leadership.
Julia: Marcie, so much of your advocacy focuses on this question of how to build stronger systems to support and assist disabled people during crisis situations, whether that’s during the pandemic or in the aftermath of natural disaster and climate disruption. There are so many similarities here – so many structural failures, failures to recognize how and why disabled people face disproportionate harm, failures to center disabled people’s needs during disaster response and recovery.
Would you tell us more about your work at the intersections of disability and disaster response? What have you noticed about the way disaster planning and response marginalizes people with disabilities?
Marcie: I’ve been working in the disaster business for twenty years, and there’s something I’ve seen over and over again. Whether it’s in the planning, on the ground, or the recovery process after a disaster, there is a total lack of recognition for the civil rights that people with disabilities have. The Rehabilitation Act, the Stafford Act, the Americans with Disabilities Act—there are a number of US civil rights laws that require people to be provided equal access to services and support programs. And yet, we have failed on every front.
Disabled people are expected to depend on donations. They’re expected to depend on programs run by volunteers. They need equipment, supplies, housing, personal assistance services, transportation—so many of the pieces that make all the difference in surviving the disaster—and they’re expected to rely on the kindness of strangers rather than the obligation of the government to ensure equal access whenever federal funds are used, including by all grantees and subgrantees spending funds that originated from federal sources.
Julia: This is such a frustrating, frightening reality – the way that disabled people’s survival often comes down to chance and to charity. Of course, I want to recognize and affirm the extraordinary contributions that ordinary people make in the aftermath of a disaster, the kindness and the generosity that can and does save lives. But to rely on that? To have to depend on that? That’s not an acceptable strategy.
It’s really striking to me that some of the most important disability-focused disaster work is being done by disability communities ourselves. But it’s almost always happening on a shoe-string budget, without much support from larger agencies or from the government. It’s crowd-funded by hundreds of tiny donations.
Marcie: I think about that all the time. I am so grateful that disability justice leaders have stepped up to provide mutual aid for the survival of our people. But this too is a form of charity, a situation where people have to come together in order to fill the gaps.
In Houston, there was a catastrophic winter storm that cut off power and water to thousands of people. The Mayor’s Office for People with Disabilities reached out to the Partnership for Inclusive Disaster Strategies in order to get bottled water for twelve thousand people with disabilities. The government came to a small, disability-led nonprofit. It was on us to find water for disabled people to drink.
It became our job, our responsibility to our siblings to try and find charitable solutions for the government’s failures. And while it’s absolutely appropriate to call out this disgrace, at the same time, twelve thousand people with disabilities needed water. So while we were expressing our outrage, we—
Julia: —You were also trying to find the water.
Marcie: Exactly. We had to rely on the kindness of strangers. And if there was that need again today, would that change? No. Nothing has changed. We still rely on charity to meet the life-saving and life-sustaining needs of people with disabilities.
Julia: That story you told about the Partnership for Inclusive Disaster Strategies stepping in to find the water brings to mind a problem I’ve really been wrestling with. Disability-led organizations are almost always small budget, grassroots groups, and yet they’re doing some of the most crucial life-saving work for disabled people.
I find it painfully frustrating. And I don’t know what to do about it. Because at the end of the day, even if it is the government’s responsibility, I don’t trust the bigger, better-funded organizations to get it right for disabled folks.
Marcie: You’re absolutely right, Julia. I still find myself having conversations with large, well-funded humanitarian organizations that have no process in place for providing accessibility in meetings.
Julia: If organizations can’t manage to put basic accessibility procedures in place for their board meetings, it’s not likely they’ll magically drop into place in the midst of a disaster.
Marcie: It’s imperative that we center the voices of the people with the most lived experience, the people who are the most affected by the decisions of those in power. Not because it’s the right thing to do, although it is. And not because the law might require it, although it does. But because it’s in the best interest of the whole community.
Julia: You’ve been emphasizing the importance of having disabled people involved in disaster response, not just as the recipients of services, but as service providers and policy makers. Can you tell us more about what that matters?
Marcie: As a person with a disability myself, as a parent of adults with disabilities, as a grandparent of a three-year-old with a disability, and as a BFF with so many other people with disabilities, let me just say – disabled people are masters at problem-solving. We have to be. We do the Plan B, Plan C, Plan F thing all the time.
That gives me a certain expertise. My ability to anticipate what problems are going to emerge, coupled with my ability to problem solve on the fly, makes me a crackerjack emergency manager. It’s not like I have magical powers. I’ve just had to hone my ability to anticipate anything that could possibly go wrong.
I’ll give you an example. I have a friend who works on an upper floor of a building. She uses a power chair. One day, the power went out in her building. It wasn’t even an emergency in the grander sense, just an ordinary power outage. But it was a Friday afternoon.
Julia: It always happens on Friday afternoon, doesn’t it?
Marcie: These things always happen at the worst possible moment. So the first responders say, “Not to worry. We’ll get you downstairs.” And she asks, “What about my chair?” They tell her, “We can’t get your 350-pound chair down multiple flights of stairs. We’re gonna have to wait for the power to come back on for that.” But you know, it’s Friday afternoon. The weekend is coming, and no one’s going to be back in that building until Monday morning. What exactly is she supposed to do without her chair until then?
Julia: As a wheelchair user myself, I think about that all the time. Whenever I’m separated from my own wheelchair, whether that’s getting off an airplane or being carried down the stairs when the fire alarm sounds, there’s a feeling of intense vulnerability. And yet, so often, disaster planning doesn’t take into account how important it is to make sure disabled folks keep access to our tech.
Marcie: That’s exactly right. There’s no plan in place for what happens when somebody is separated from their equipment.
Julia: That’s just one example, of course. When it comes to disaster situations, there is often no plan in place to ensure that disabled people get access to services, that we get access to information.
Marcie: Communication access is a perfect example of this problem. In the first press conferences during a disaster, there’s often no sign language interpreter. Eventually, once disability activists yell and scream, they finally start to get interpreters in place. But the people who need it most still lose out on critical access to early information.
To really serve the community means thinking about all these different dynamics: ensuring access for people with all different kinds of disabilities, for families with children, for people with service animals. Doing that takes somebody with lived experience. When you have disabled people in leadership roles? Our lived experience saves lives.
¹ Statistics about COVID-19 nursing home deaths are drawn from the Kaiser Family Foundation’s health policy website.
Credits:
Image Description: Photo of Marcie Roth, a smiling, older, disabled white woman with grey curly hair and red glasses wearing a black top, colorful scarf and a pin that says “Disability Power and Pride.” She is standing in front of a sign reading Forbes 50 over 50.
