This piece is a commentary, part of The Appeal’s collection of opinion and analysis.
More than 42,000 people in the U.S. have been confirmed to have COVID-19, and over 500 people have died from the illness. Those are frightening numbers, particularly given the speed at which the numbers have grown.
Yet the continuing disregard that government officials, the media, and society writ-large seemingly have for disabled people like me—those at heightened risk of severe illness from COVID-19—remains alarming.
The people most at risk of contracting the coronavirus are the elderly and those with certain pre-existing health conditions. Forty-nine million adults in the United States are age 65 and over, says the Census Bureau. And among non-elderly adults in the United States, 50 million to 129 million have a pre-existing condition, according to the Department of Health and Human Services.
But as someone with arthrogryposis—a disability that affects my joints and muscles—and a history of blood clots, I have two conditions that raise my vulnerability. Last week, the Centers for Disease Control and Prevention (CDC) released a list of 10 conditions that increase the risk of severe illness from the virus.
Far too many people are entirely ignoring the gravity of COVID-19, believing that they are young and healthy and, therefore, not at risk. College students headed to the beaches in Florida this month for spring break. Until states began implementing recent stay-at-home restrictions, people were filling bars and restaurants.
Believing that we should just stay at home while others continue on with their lives is ableist.
But younger people can carry the virus and pass it on to a disabled person, older adult, or our caregivers. Young people are also not immune to the virus: 53 percent of people with COVID-19 in New York are 18 to 49 years old.
Some people are suggesting that rather than require all people to stay at home, only those most at risk of contracting the virus should be confined to their homes. In fact, believing that we should just stay at home while others continue on with their lives is ableist—discriminatory or prejudiced against people with disabilities, perpetuated by a belief that disabled people are inferior to nondisabled people. Ableism takes many forms. On an individual level, ableism is attitudes, assumptions, or stereotypes about people with disabilities. Institutional ableism, conversely, is marked by systemic and pervasive policies and practices that negatively affect people with disabilities. Like all types of oppression, ableism can be implicit or explicit.
Although it seems we cannot count on society to look out for those of us most vulnerable, we would like to believe that our government is taking steps to ensure everyone in the U.S. is safe. Yet, that also does not seem to be the case. Although President Trump has finally acknowledged that the U.S. is in crisis, his indifference toward people like me has remained constant. For example, he regularly discusses older people during these briefings but has never mentioned how the virus is affecting disabled people.
More troubling, the administration’s messaging around COVID-19 has been entirely inaccessible to many people with disabilities. While governors typically have sign language interpreters next to them when speaking to the public about emergencies, the White House daily COVID-19 press briefings have never once included a sign language interpreter, and their videos shared on social media usually lack captioning. The National Council on Disability, an independent federal agency that advises the president and Congress on disability policy, recently issued a letter to the White House concerning the lack of sign language interpreters.
Disability organizations have begun developing information about the illness in plain language so that people with intellectual disabilities or low literacy levels are informed—something the government has also failed to do.
The Trump administration is not alone, however, in ignoring our needs during these difficult times. Disabled people have taken to Twitter to express their frustration at the Senate’s failure to include people with disabilities in its proposed COVID-19 legislation.
Although people with disabilities have many of the same needs as our nondisabled peers, we also have distinct needs that need to be considered. For example, if there is a complete lockdown, like in Italy, will my personal care assistants still be able to come to my house? Without them, I am unable to eat, bathe, or even get out of bed. Last month, a disabled person in China died after his caregiver was quarantined and unable to get to him.
Institutionalization is also a concern among disabled people. The Centers for Medicare & Medicaid Services (CMS) just recently waived rules that prevented the unnecessary institutionalization of people with disabilities and older adults. Now, it will make it easier for people to be placed in nursing homes. Far too often, disabled people are placed in institutions during emergencies and then remain stuck there long after the incident has ended, according to research. What is being done to ensure people with disabilities are not being institutionalized because of COVID-19?
Homelessness also disproportionately affects people with disabilities, with some estimates finding that 24 percent of the homeless population have disabilities. Are there accessible shelters available to serve disabled people, including those who contract COVID-19? What is being done to prevent the spread of the virus to those living in shelters? How are the needs of homeless individuals being addressed in cities with lockdowns?
Similarly, incarcerated disabled people have an increased risk of contracting the virus. Some prosecutors have pledged to reduce the number of people in jails, prisons, and courtrooms to mitigate the spread of COVID-19. But what other efforts are being implemented to ensure that those incarcerated are protected while also not being further isolated?
Further, how are we ensuring healthcare is widely accessible, including for people with disabilities and older adults? In Italy, for example, hospitals are beginning to ration healthcare, denying it to those who are older. Just last week, the New York Times published an opinion piece from medical professionals that discussed similarly needing to ration care in the United States.
If there is a complete lockdown, will my personal care assistants still be able to come to my house? Without them, I am unable to eat, bathe, or even get out of bed.
In fact, some states’ Crisis Standards of Care protocols—which detail how medical care is provided during catastrophes if there are shortages—explicitly allow for people with certain disability types to be denied life-saving care. On Monday, disability advocates filed a complaint with the Department of Health and Human Services’ Office for Civil Rights against Washington State concerning such plans. They say that rationing medical care violates federal disability rights laws.
Eugenics-based ideologies should never be used to determine who deserves life-saving measures and who doesn’t.
Other issues also remain that need to be urgently addressed. Insurance companies, as well as Medicaid and Medicare programs, need to change their rules so people can stockpile their medications. Schools and universities need to ensure that disabled students are still receiving reasonable accommodations as they move to online instruction. Accessible transportation must be available. And, all emergency management efforts must comply with federal and state disability rights laws.
Furthermore, disability advocates were concerned that the coronavirus stimulus bill, which Congress just failed to pass, might weaken protections for students with disabilities. For example, some drafts of the bill have included a provision that would allow the secretary of education to waive portions of the Individuals with Disabilities Education Act (IDEA). This law, which has existed for 45 years, entitles students with disabilities to a “free and appropriate public education” in the “least restrictive environment” possible. Proposed waivers could weaken states’ obligations.
Above all, government officials must consult with the disability community as they continue to develop and implement plans. We know our needs better than anyone else.
“’Nothing about us without us’ isn’t just a mantra, it’s how cooperative governing works. Members of the disability community need to be engaged as advisors and experts as every level of government works on #COVID–19 rapid response,” Representative Ayanna Pressley of Massachusetts said on Twitter.
People vulnerable to the virus are everywhere. We are mothers, fathers, sisters, brothers, aunts, and uncles. We are students, teachers, lawyers, retail associates, doctors, and chefs. We are your neighbors and your friends. If the U.S. is going to get through this pandemic with the least amount of fatalities possible, we must work together to protect everyone. Ableism has no place now or ever.
Robyn Powell is an attorney, researcher, and proud disabled woman who lives outside Boston.