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COVID-19 as Disability Genocide: 
How Society Fails Disabled People During Disasters

A conversation between Marcie Roth and Julia Watts Belser

June 1, 2022

To Start

Marcie Roth has done work on disability and disasters for many years. She talked with Julia
Watts Belser about some of her work. This is a plain language version of their conversation.
When COVID-19 happened, it hurt people with disabilities a lot. Marcie talks about why people
with disabilities get more hurt during disasters. She talks about how society should help disabled
people during disasters.

Words to Know

Americans with Disabilities Act (ADA) – A law passed in the U.S. in 1990. It says that it is
against the law for anyone to discriminate against disabled people.

Disability justice – A movement that fights against discrimination. It got made by and for queer
and trans disabled people of color. You can learn more about disability justice by going to
https://www.sinsinvalid.org/blog/10-principles-of-disability-justice

Disaster – A big emergency. In this paper, we use the word “disaster” to talk about emergencies
that have to do with climate change.

Discrimination – When someone gets treated unfairly by society because of who they are, in
ways that take away their rights.

Genocide – 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.

Home and community-based services (HCBS) – Services that help people with disabilities live in
our communities instead of institutions. For example, having an in-home support worker is a
kind of HCBS.

Institutions – Places where a lot of disabled people live. People living in institutions usually did
not choose to live there. People living in institutions usually don’t get to make their own choices
about their everyday lives.

Pandemic– When a disease starts spreading really quickly, and a lot of people get sick.

Rehabilitation Act – A law that passed in the U.S. in 1973. It says that the government can’t
discriminate against disabled people.

Stafford Act – A law that passed in the U.S. in 1988. It said what kind of help the government
needs to give people during disasters. After hurricane Katrina, the law got changed to say the
government has to help people with disabilities during disasters.

Headshot photo of Germán Parodi sitting in his wheelchair in front of a multi-colored painting. Germán appears as a Brown Puerto Rican man with long dark brown curly hair wearing a black shirt with text on it: "Our Homes Not Nursing Homes ADAPT" with an icon of a person in a wheelchair breaking free of handcuffs in the center of the shirt. He is wearing a gray sweater on top.

Germán Parodi (he/him) is Co-Executive Director at the Partnership for Inclusive Disaster Strategies, a disability-led organization that addresses the needs of people with disabilities in disaster situations.  He serves as the Focal Point for Persons with Disabilities in the Americas for the United Nations Disaster Risk Reduction office. Germán deployed to Puerto Rico shortly after Hurricane Maria, and is the first person with a significant spinal cord injury to deploy to a disaster-impacted area.  He is an active community organizer with Philadelphia ADAPT, an activist group working to advance disability rights and equitable access. 

Julia:  Listening to you talk about trauma, I’m thinking about the way your own experience as a disabled person shapes the kind of emotional expertise you bring to this work – the way you’re attuned both to the lived realities people with disabilities face and our specific needs in the wake of disaster.  That kind of attention often falls through the cracks with many large-scale emergency response systems.  Can you tell us more about why?

Naomi:  We have seen many organizations that want to focus on people with disabilities, but they don’t collaborate and they don’t have disabilities and it does not work.

For example, many governments use registries as a way to assist people they consider vulnerable during disasters. But they often don’t work, unless there’s deep collaboration.  Many people with disabilities don’t understand why they should register.  Even if they do, disability commissions and other agencies often report that during an actual disaster, the registry never gets used.

We hear this issue again and again. While we were working in Puerto Rico, we assisted a mother of a child with multiple disabilities. She had used the registry, so she kept waiting for someone to bring the water and the power supplies that would keep her child alive.  But no one came.  The registry created a false sense of expectation.  In the end, she did get the supplies she needed – but it happened through mutual aid, not through official channels.

Credits:

Edited by Lucy Child, Amanda Chu, and Julia Watts Belser

Image Description: Photo of Marcie Roth. She is a smiling, older, disabled white woman with grey curly hair and red glasses. She is 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. 

“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: A Public Archive Project. July 1, 2022.

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