Disabled Individuals Are Ready, Anxiously, For Lifesaving Covid-19 Vaccinations

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On January 26, 2021, Governor Gavin Newsom announced that California would alter its previous plan to start offering vaccines to “high risk” adults under 65 in the next vaccination phase. Instead, future eligibility levels in the state will be determined solely by age.

The United States Centers for Disease Control’s current non-binding recommendation is to offer vaccines to disabled and chronically ill people – “aged 16—64 years with underlying medical conditions which increase the risk of serious, life-threatening complications from COVID-19” – in Phase 1c. In many states that would mean eligibility in a month or two, once the current first phases are completed. That was the plan for California, too, until this past week.

This move in California deeply disappointed the disabled community, and intensified growing concern among disabled and chronically ill people nationwide.

In a January 28 press conference, Andy Imparato, Executive Director of Disability Rights California, explained that based on current rates of vaccine production, going strictly by age will mean disabled and chronically ill people won’t have access until June.

Another speaker at the virtual press conference, San Francisco disabled activist Alice Wong, has been both profoundly affected by the Covid-19 pandemic, and active in drawing attention to the unique risks and hardships the virus poses to people with disabilities and chronic illnesses. California’s change in vaccination priorities spurred her to further action:

“When I found out that Governor Newsom was eliminating prioritization for groups under Phase 1C in the state’s vaccination plan I felt a surge of rage and fear at the injustice of it all. In response, I tweeted with the hashtag #HighRiskCA as a way for people from multiple communities disproportionately impacted by the pandemic to share their stories.”

This is a localized variation on a hashtag that’s been active since the pandemic started in March 2020, #HighRiskCovid19. Another important hashtag that has since the beginning expressed the feelings of high risk populations is #NoBodyIsDisposable.

Other disabled people also spoke out at the January 28 press conference.

Elena Escalera, Ph.D. of St. Mary’s College and the #NoBodyIsDisposable Coalition said that the prospect of being included in the next phase of vaccinations is encouraging to people with disabilities and chronic illnesses. But when those priorities were changed in California to leave out people with disabilities under 65, “… there went the glimmer of hope of survival.”

Anesthesiologist and bioethicist Dr. Alyssa Burgart highlighted the deep disability bias at the core of these decisions.

“The bias against people with disabilities is pervasive. It is pervasive in health care because many of these folks are largely invisible. As you can see, many of these speakers have been confined to their homes because of the pandemic, and how much this has truly limited their ability to be engaged.”

And Claudia Center, Legal Director of the Disability Rights Education and Defense Fund, noted the multiple layers of disability and chronic illness discrimination that disabled and chronically ill people have faced throughout the pandemic, and which also intersect with racial and other biases. These issues have included not just the latest setbacks in vaccine prioritization, but also denial of Covid-19 treatment through “crisis standards of care,” disabled people not being allowed to bring essential support staff with them to the hospital, and lack of data collection on how the pandemic affects disabled people.

It seems like California is making this change in priorities so it can avoid complicated and subtle decision-making, and instead go by more easily confirmed age. If so, it will achieve this simplicity by throwing some of its highest risk populations under the proverbial bus. Whatever the reasons for this change, and whether or how long its current priority system stands, it is adding to an already tense undercurrent of feeling among people with disabilities all over the country. There is a growing fear and conviction that disabled and chronically ill people, and our very specific kinds of risk from COVID-19, are once again being misunderstood and overlooked.

Obviously, everyone who isn’t a vaccine or Covid skeptic is anxious to get vaccinated for the virus. And we all face the same fundamental barriers to vaccination, such as lack of sufficient supply and clumsy distribution systems. It’s also important to recognize that putting any group higher on a priority list by itself doesn’t do much. You can be at the top of the list, but if you can’t figure out how to get a shot, or if your local provider runs out of doses, you are out of luck.

However, disabled and chronically ill people generally have more reason than most to be anxious and impatient. Some specific disabilities and conditions don’t put people at that much more of a risk from Covid-19 infection, serious illness, or death, but a great many do. This is not mere speculation or paranoia. It is a documented medical fact recognized by most medical and epidemiological authorities.

Plus, being disabled exposes us to other, less direct hardships from the pandemic. For one thing, disabled people are more likely to be institutionalized – in congregate care like nursing homes, assisted living, and group homes – making it impossible for us to isolate ourselves. Many others of us require home care, which is less risky than nursing homes, but still exposes us to vectors of infection that we can’t really do much on our own to avoid.

In a Los Angeles Times Op-Ed, Tim Jin writes:

“Many people with disabilities are dealing with comorbidities of health that make us more vulnerable if we get the virus, while routine contact with multiple caregivers and other people who support us increases our risk of being exposed to COVID-19 … As a person with cerebral palsy who lives on my own with support, I am more at risk because I rely on my staff to help me. I am exposed to multiple support people who come and go each day.”

And It’s not just people with conditions conventionally seen as “disabilities” who face higher risk from Covid-19. In an article for CNN, organ transplant recipient Kendall Ciesemier underscores the risk to people with chronic illnesses and other specific medical conditions:

“The ones with cancer, with HIV, who have recovered from a bone marrow, stem cell, or solid organ transplant – are increasingly becoming deprioritized across the country, sent to the back of the vaccine line.”

She adds that these more recent setbacks only add to the sense of hopeless invisibility disabled, chronically ill, and other marginalized people have experienced throughout the pandemic:

“To me and many like me, living in this pandemic has provided a daily reminder that our needs are unseen to those around us, that our lives hold little value to those who refuse to wear masks, who gather in groups or fly to a vacation destination. This is especially true for immunocompromised Black and brown people, who are among the most marginalized.”

As disabled and chronically ill people we aren’t saying we have to be the very highest priority. We also recognize that other groups, particularly the elderly, have also at various points during the pandemic been ill-served, forgotten, or written off as acceptable losses. Most of us agree that prioritizing elderly people and healthcare workers makes sense. But we are dismayed to see disabled people who don’t fit these categories seemingly forgotten.

Prioritizing everyone over 65 or 75 certainly puts some disabled people at the front of the line. But while many elderly people are also disabled, most disabled people are not elderly. According to the U.S. Census, about 34% of Americans over 65 have some kind of disability, a substantially higher disability rate than for the overall population. But only about 27% of Americans with disabilities are over 65. Disability and age overlap, but only partly.

Likewise, prioritizing health care and congregate care employees and residents is important to the disabled community, but only addresses some of us, not the vast majority who don’t live in these facilities. Everyone knows about the tragedy of infection and death in nursing homes. Fewer people realize the same risk to developmentally disabled people in large institutions and smaller group homes. Meanwhile, people with disabilities who live on their own, or at home with home care, are virtually forgotten.

As a result, while we are nominally recognized to be “high risk,” most states’ vaccine priorities fail to recognize people with disabilities and chronic health conditions as a priority. Despite CDC recommendations, only 6 states currently offer vaccines to “high risk” adults who aren’t either elderly or health care / long term care workers. Many of us face the real possibility of our high-risk conditions not being recognized at all, resulting in more unnecessary illness, death, and long-term suffering.

Given the present scarcity of vaccine doses though, what is the fairer answer? This question is often presented as a false choice between deciding when to vaccinate disabled people based on science, and giving priority to the disability community for social or political reasons. In fact, it should be a combination of the two.

Scientists may know better which specific chronic illnesses and disabilities are and aren’t higher risk for Covid-19. But they aren’t always good at knowing and remembering the other ways Covid-19 disproportionately affects and endangers disabled and chronically ill people. One reason why a lot of disabled people are getting not just anxious but angry is that so many of us know from experience that without our own deliberate advocacy, it’s entirely possible for disabled and chronically ill people to be simply overlooked.

Deciding in a more targeted way who should have earlier access to Covid-19 vaccines is hard. Nobody is saying it’s not. But simply going by age, or focusing on a few specific environments and professions, isn’t the answer. It’s not logical, scientific, or humane.

On the other hand, the new Biden Administration appears to be a little bit ahead of the game in recognizing disabled and chronically ill people’s higher risk, and making them a higher priority. Its initial Covid-19 proposals include:

• Working with the CDC to produce more helpful guidelines on how to prioritize people with disabilities and chronic illnesses.

• More aid to congregate care facilities that house people with developmental disabilities, and more assistance to support home and community based services for disabled people who need assistance but live in their own homes.

• Better data collection to measure the impact of Covid-19 specifically on disabled and chronically ill people.

Implementation is always difficult, but a few more basic recommendations aren’t hard to think of. For example:

• As soon as vaccine supplies substantially increase, all states should make people with disabilities and chronic illnesses eligible, with no further delay.

• Make sure any gate-keeping is reasonably loose and flexible, allowing a variety of ways to validate disability or chronic illness, including common-sense self-reporting, and physician or service-provider validation.

• Explore ways to get vaccines to disabled people who can’t travel safely to centralized vaccine sites. This might include getting vaccines from doctor’s offices and disability service providers, or through home visits.

Among the many fears generated by the Covid-19 pandemic, one affecting the disabled community from the start is that our fellow Americans and portions of our government just don’t care as much if we die. This idea has its roots in over a hundred years of on and off enthusiasm for eugenics – the idea that society is better off without disabled people, and that disabled people themselves are, in a sense, “better off dead.”

A more specific fear and a profound sense of insult took hold in the early days of the pandemic when the fact that elderly and disabled people were at much higher risk of death was reported as a way to reassure other Americans that at least they weren’t in danger. This also turned out to be untrue, but even if it had been, it was not a proud moment in the history of American bravery or solidarity. Things only looked worse when states and localities proposed rationing policies that would deny care to people with certain kinds of disabilities who got Covid-19 – explicitly and in policy writing them off.

Now it’s already looking like the vaccine rollout might sacrifice or simply overlook disabled people. It’s probably still an exaggeration to say, as many disabled people are saying now, on social media and elsewhere, “They want us dead.” But the slightly less dramatic assertion that “They don’t care about us” honestly doesn’t seem far fetched these days. And even if we have our fellow Americans’ and government’s intentions all wrong, their actions have not been promising.

There’s still time for a turnaround, but that time is running out fast.