As of April 28, more than 142 million Americans have been vaccinated against COVID-19, though the state-by-side effort has included glaring inequality. From the moment vaccines became available, communities of color, disabled people, and impoverished neighborhoods have been fighting for vaccine access while wealthy white people swapped tips on scamming appointments in marginalized neighborhoods. The pandemic has hit disabled people especially hard, especially in Black and Brown communities. One third of deaths occurred in long-term care facilities such as nursing homes, where many residents are high risk. The virus also burned through prisons, where the incidence of disability is much higher than in the general population, and Black, Brown, and Indigenous people are heavily overrepresented.
The stakes of the vaccine rollout have been huge for the disabled community. With this in mind, Bitch spoke with advocates Lateef McLeod, an author, poet, and PhD candidate in the anthropology and social change department at the California Institute of Integral Studies; Sabrina Epstein, a public health student and disability advocate at Johns Hopkins with a focus on vaccine equity; and Brandie Sendziak, the supervising attorney at Independent Living Resource Center San Francisco (ILRCSF), the legal director at Fat Legal Advocacy Rights and Education Project (FLARE), and cofounder of the #NoBodyIsDisposable Coalition about the fight for disabled people to be prioritized in vaccine distribution, with the #HighRiskCovid19 hashtag and accompanying state variants like #HighRiskCA chronicling the work of activists and advocates to protect themselves and eventually be able to leave their homes again.
When did you realize that vaccine equity was going to be an issue in the COVID-19 response, and what were your specific concerns?
Lateef McLeod: I began to question what was going on when I noticed that personal care assistants (PCAs) were in the first category of people to get the vaccine and people with disabilities were not. This didn’t make sense to me because PCAs are in close intimate contact with people with disabilities, who still couldn’t get COVID-19 even if their PCAs were vaccinated. So for those of us in the disability community to be completely safe, we had to be vaccinated too. Organizations like the one that I am a part of, the Disability Justice League, Bay Area, petitioned our state of California to make sure people with disabilities get the vaccine. After many public hearings, we convinced the state that it was a good idea to give us the vaccine. We were then able to get priority access to the vaccine.
Sabrina Epstein: I started working on COVID-19 and disability research in March 2020, and since then I had been watching the vaccine issue with concerns about disability equity. With the disastrous rationing of ventilators in the early days of the U.S. pandemic, it was clear that disabled voices weren’t being included in pandemic policies. In January 2021, I registered my grandfather for his vaccine in Texas, and realized that I was eligible there, but not in Maryland, where I live. In talking to other high-risk disabled folks, I realized that this was a much larger problem and that the first step to understanding how to address the inequities in vaccine prioritization was understanding the scope of the issue.
Brandie Sendziak: I was worried about vaccine equity being an issue from the beginning of the pandemic when states were issuing crisis care guidelines that were discriminatory. Disability, aging, and fat organizations were able to work with California in amending the crisis care guidelines to be less discriminatory. This work was so important because basing lifesaving decisions on discriminatory guidelines would have a disproportionate impact on communities of color. However, from the beginning there has been a feeling of disposability for disabled, older, and fat people.
When California’s vaccine working group [after being advised by its vaccine advisory committee] drafted the first version of the vaccine priority list that the governor released, we were very disappointed that disabled people were in category 1C. This was heartbreaking and confirmed the message of disposability. Many people in the fat community and specifically fat disabled people of color had been putting off important medical care for nearly a year because of possible serious complications from COVID and the possibility of facing discrimination in a care-rationing situation.
Vaccine equity is often presented as a racial issue or a disability issue. What kinds of concerns in racialized disability communities are being ignored in these conversations? What have you learned from organizing around this issue?
LM: People still need the same capacity and availability to travel to get the vaccine. Some people with disabilities rely on public transit and paratransit vans for transport to vaccine sites that may or not be reliable. People of color, in particular the African American community, can have a mistrust of the medical industry because they have a history of medical malpractice and neglect. More outreach needs to be shown to people of color with disabilities so that they can have equal access to the vaccine.
SE: We need an intersectional lens to truly understand the barriers facing people who want vaccines. The effects of systemic racism and systemic ableism can compound to worsen vaccine inequities. For example, we know that disabled people are facing several challenges in getting vaccines: prioritization, registration, transportation, and accessibility. The racial disparities in the vaccine rollout are rooted in issues that overlap with those facing disabled people such as segregated neighborhoods not having transit or being far from vaccination sites and BIPOC having lower insurance rates. I would encourage people to take this as an opportunity to learn about the systemic ableism and racism in the U.S. medical system and listen to multiply marginalized activists working on this issue.
BS: You should always look at equity through a disability justice framework. Centering the needs and experiences of the most marginalized people in the most marginalized communities (for example a super-fat, disabled, older, queer, trans person of color) is a good starting point. The phrase “no body is disposable” was originally coined by Patty Berne and Stacey Park Milbern, and the disability justice community organized around this concept in relation to the PG&E power outages in California and advocating for immigrant rights. At the beginning of the pandemic, FLARE, ILRCSF, and organizer Max Airborne came together and started the #NoBodyIsDisposable Coalition. We wanted to focus on intersectionality and providing information to and centering the most impacted people, such as fat, disabled people of color.
Early in the pandemic, #NoBodyIsDisposable core members spent many hours brainstorming and coming up with a three-part campaign that included an open letter that was signed by more than 1,500 people, organizations, and health providers; a selfie campaign; and a Know Your Rights toolkit. Through this campaign we gained experience advocating for ourselves and reminding people we’re not disposable. When we were not being prioritized for the vaccine, #NBID and FLARE knew we needed to advocate again for our communities. We decided to do another three-step campaign. We knew it would be important to explain to the state that not prioritizing fat and disabled communities would have a disproportionate impact on people of color. We also wanted to explain to the state why people with conditions putting them at high risk needed to be prioritized for the vaccine and for the state to understand that these individuals in many cases have been putting off important medical care waiting for a vaccine.
We need an intersectional lens to truly understand the barriers facing people who want vaccines.
Sabrina, can you tell me a little more about the tool you worked on at Johns Hopkins?
SE: I am part of an amazing team of researchers and advocates working on this tool, and many of us are disabled. As disabled researchers, we are connected to the disability community identified in this gap in the vaccine rollout. This is an example of why disabled people need to be at the table in making public health decisions. Accessibility was a top priority in creating this tool. All of the state vaccine information sites that we draw the information from have accessibility barriers. We worked with WebAIM to score each state, territory, and the District of Columbia’s official vaccine information websites. All 56 websites contain accessibility issues. From a public health perspective, the COVID-19 Vaccine Dashboard for People with Disabilities serves as a key data collection and advocacy tool. We also hope that this dashboard helps individual disabled people identify their vaccine eligibility.
Some people fail to see vaccine equity (or disability in general) as an explicit feminist issue. What should feminists, especially those who want to be coalition builders, be thinking about as they approach these topics?
BS: Equity should be of fundamental importance to feminists. It helps to study the principles of disability justice to understand how to be good coalition builders. These struggles for justice are intertwined and we must all work together to dismantle and replace systems of oppression. It comes back to caring about and centering the experience of the most marginalized members or the most marginalized groups. We’re pushing back against the message that certain lives are disposable at every opportunity—that’s the best true path forward.