People with disabilities are at a heightened risk of dying from COVID-19, yet many states, counties and countries have failed to prioritize them in the vaccine rollout.
One study, conducted by FAIR Health and Johns Hopkins Medical School, found that people with developmental and intellectual disabilities are three times more likely to die of the virus — a mortality rate only matched by individuals with lung cancer. Similarly, an analysis from the United Kingdom’s Office of National Statistics concluded that disabled adults accounted for 59 percent of the UK’s COVID-19-related deaths, while making up just 17 percent of the population. Another report shows that people with learning disabilities were six times more likely to die of COVID than those without.
Despite copious confirmation, local governments won’t budge. Though even if qualifications were modified on a national level, it wouldn’t necessarily solve the problem. Atop eligibility complications, many vaccination registration and information websites disregard disability laws, lacking mandatory accessibility features. WebAim, a web accessibility nonprofit, analyzed vaccine information and registration websites in all 50 states and the District of Columbia, and found that, on average, the 94 state-level COVID-19 vaccine pages averaged 18.9 detectable errors.
“The most common error was low contrast text which makes text difficult to read, especially for users with low vision,” Jared Smith, Associate Director of WebAim at Utah State University, tells SheKnows. Other frequent issues were missing alternative text in place of images, empty links and buttons without descriptions and missing form input labels that describe the purpose or function of form fields to screen reader users, he adds
The LA Times reported that blind residents in at least seven states were unable to book appointments without assistance due to the inaccessible websites, though it’s important to note that inaccessibility is a problem for other websites, too.
“Inaccessibility is, unfortunately, more the norm than the exception,” Smith explains. “There is often a lack of awareness about web accessibility, but that is not a reasonable excuse for discrimination.”
Marissa Ditkowsky, who leads the Disabilities Community Project at legal nonprofit Tzedek DC and serves as Associate Director of Job Accommodations at National Disabled Law Students Accommodations, agrees. “The websites to make appointments are inaccessible, and the websites to access information about the vaccines, the phases, and what is even going on are inaccessible,” she says, adding that inaccessibility is a literal, physical issue as well. Many mass vaccination sites have little room for individualization should someone need accommodation, and require waiting outside in long lines and/or in crowded waiting rooms. (This goes for testing sites too.)
“We have been advocating now since the start of the pandemic to explain who people with disabilities are, and explain that we are a health disparities population,” says Susan Dooha, Executive Director of Center for Independence of the Disabled New York. “We’ve had difficulty getting the Health Department to send out disability literature about prevention and testing, and getting them to address how people will have full and equal access to the vaccination system.”
What’s more, Dooha says, is that the rate of disability is higher among certain populations. Disability affects one in four Black people in the United States, for example, which is the highest ratio of all ethnic groups except Alaska Natives, whose ratio is three in ten. There is also an extremely high poverty rate among people with disabilities: In 2018, 26.9 percent of people with disabilities were living in poverty, which is more than double that of non-disabled people.
“There is a huge poverty divide,” Dooha says, adding that, for this reason, people with disabilities are less likely to have internet and/or access to technology, especially amid the pandemic when public facilities, like public libraries, are no longer accessible.
“There are people who are doubly affected by stigma and discrimination, and who the system must be especially careful to ensure get testing, tracing, treatment, and prevention,” she says. For that, however, they must be properly prepared: People need interpreters, captioning, and videos, and providers must understand how to communicate with people with various disabilities, like via text.
Except none of this is happening.
“They’re posting these videos about COVID-19 and vaccines, but they’re either not captioned, or don’t have ASL,” she says. “We need training for healthcare providers that address the obligation of offering reasonable accommodations.”
And just because they are eligible, it does not mean that the vaccine is accessible for these individuals.
“The vaccine rollout is, quite frankly, a symptom of the larger marginalization of people with disabilities,” says Adam Zimmerman, who is visually impaired but not yet eligible in Arizona, where he lives with his fiancé. “People with disabilities have always been an afterthought legislatively or in community prioritization.”
Zimmerman points out that his visual impairment puts him at a higher risk for contracting COVID because he can’t drive and occasionally depends on ride-share. “I don’t know if the driver is being careful in their everyday life, or if the previous passengers are,” he says. “I can’t tell if the driver is actually wearing a mask. I have to trust that they are.” Plus, he depends on touching people and objects to identify who and what they are. His uniquely heightened risk makes the fact that he likely won’t be eligible for vaccination until May — if not later — all the more discouraging.
Though for the disabled community, this negligence isn’t especially new.
“There has been a record and ongoing record of discrimination in the health care system towards people with disabilities,” Dooha says. “One has to start there: With sterilization, institutionalization, [the fact that people] don’t see people with disabilities as people.
These disparities persist even in the present day.
“People with disabilities have historically been left out of emergency and disaster planning,” says Carole Tonks, Executive Director of Alliance Center for Independence, a New Jersey nonprofit that promotes independent living for people with disabilities. Tonks says that the Center is continually receiving calls inquiring as to how they can register for and/or get the vaccine, and there is no state-wide plan in her place for people like her son, who is autistic and high-risk, socially anxious and scared of needles, to go about getting his. “A plan for those who are unable to get out of their homes to get the vaccine should have been considered from the beginning,” she says. “People with disabilities should not have to fight for access to receive a vaccine.”
The rollout is especially frustrating for people with disabilities who are forced to watch their non-disabled peers, who are working from home, get vaccinated before them. “I’m checking Instagram, seeing people taking trips, having a grand old time. Meanwhile, I am afraid to even go to my necessary doctor’s appointments safely,” says Samantha Mannis, a writer and disability advocate who is not yet eligible in her state of California. That said, she believes she can’t blame individuals for cutting the line. “I blame the large systems and structures that are supposed to keep us safe, who knew what they were supposed to do in order to do so, but didn’t.”
Heather Tomko, a Pittsburgh-based blogger and disability activist who won the title of Miss Wheelchair USA in 2018, feels like people with disabilities have been disregarded throughout the pandemic. “The vaccine rollout has just been another situation where I’ve felt that my needs, and the needs of disabled people, are being ignored,” she says. “Unless they actively seek input from disabled residents, it’s common that the disabled community gets forgotten, or added as an afterthought.”
Andrea Dalzell, a New York City nurse and disability activist who uses a wheelchair, says the same. “It goes back to politicians being able to make decisions on healthcare that they shouldn’t be making,” she says. “You have healthcare [workers] who don’t understand us, who — even if they were to make decisions on behalf — think of us as not having a quality of life, as being burdensome on the system. And politicians think the same thing.”
“It’s kind of this, ‘Yes, we care enough to know that you’ll get COVID, but we don’t care enough to actually save your life because you’re a burden. We don’t think your quality of life is worth it,’” she adds.
Four out of five American physicians perceive people with severe disabilities as having a worse quality of life than other patients, according to a recent study. What’s more, only 40 percent of doctors report feeling confident in their ability to “provide the same quality of care” to patients with disabilities.
(A comment below the study reads, “We in the disability community have known this for decades.”)
When asked if this study implies doctors are not doing all they can to save the lives of people with disabilities, Dalzell replies, “they’re not.”
“They’re not actually studying [disability] in the healthcare world,” she continues. “[Medical] journals are always missing disability as a subgroup. We touch on race, we touch on gender, but we’re not including if they have a disability. If you’re not including them in studies, how are you actually practicing and making these determinations?”
“The reason there needs to be more of us in the profession is because we understand that we’re not even seen,” she adds.
One in four Americans — 61 million people in the United States — report having at least one disability. This is an enormous portion of the population that has historically been, and continues to be, neglected by healthcare policy-makers. How can allies and advocates ensure equitable access and treatment moving forward?
“One possible option is trying to prioritize ensuring higher risk, disabled folks are able to access appointments closer to them,” Ditkowsky suggests as an initial solution for improving accessibility amid rollout. Safe transportation should also be provided for those who need it, she says, and all vaccine centers must be physically accessible.
As for advocating for disability inclusion and equitable policy modification, Zimmerman reiterates that proper ally-ship requires speaking up on behalf of the marginalized — not speaking over them. “Give us the access to speak for ourselves,” he says.
“People with disabilities need to be included in the planning process,” Tonks agrees, and Tomko implores non-disabled people to advocate for the inclusion of people with disabilities in rooms where decisions are made.
Dalzell says the same: “We have to demand that we’re in the room, and our allies must amplify our voices.”
And most importantly, we must remember, that these disparities don’t exist in a vacuum: Healthcare and access disparities have been the norm for people with disabilities for centuries. “Everything we’re talking about was there before COVID, and it will be there afterwards,” Dooha concludes. “Unless everyone gets a wake up call to address it.”
May this be your wake up call.
Before you go, check out the best kids face masks you (probably) won’t have to wrestle on to tiny faces: