What I’ve Learned As A Disabled Person From The COVID-19 Pandemic

The end of the Covid-19 pandemic seems a little bit closer now, and the final shape it will probably take is a little bit easier to see.

What’s going to be much less clear for years to come is exactly what lessons we have learned, or should be learning from this whole experience. The most obvious lessons for all of us will have to do with science and epidemiology, and with how different countries and cultures develop sound and just emergency responses in a global crisis. But for some of us, there are more personal lessons to learn.

I have lived over 50 years with my lifelong disabilities. I thought my understanding of disability was fully formed and realistic. But I think that in the long run, what I will remember most vividly from this pandemic is the lessons I am learning about disabled people and their true place in American society. Here are three things I feel I am learning about disability from Covid-19.

1. Disability rights laws really can be misused.

In the early days after the Americans with Disabilities Act was signed, I often heard an argument against accessibility and disability rights measures that centered on the risk of non-disabled people “cheating” – using the ADA for some unfair advantage. I remember a college official saying that elevators not meant for general use should be locked, with special keys given only to certain approved disabled people, because otherwise non-disabled people will use them. People would argue that automatic door openers shouldn’t be installed in some public building or other because everyone would use them and they’d just break down. And commentators constantly worried about “fat” gaining some kind of unspecified and undeserved benefit from “claiming” to be disabled. 

These always seemed to me like insignificant problems. They sounded more like excuses that said more about the narrow and suspicious nature of the people who put them forward. In most cases, what does it matter if non-disabled people make use of accessibility features or civil rights protections? Even misuse of service and support animal rules seems like a gray area to me. It’s galling somehow, and causing some regulatory problems at the moment. But who is genuinely harmed if a few selfish non-disabled people bring their dogs into a coffee shop or even on a plane?

The anti-mask response to Covid-19 has made me reassess this view. Anti-mask people are actually harming people when they claim that the ADA allows them go without masks into crowded public spaces. It’s one thing to have an abstract, principled argument about the balance between civil liberties and public health. It’s another to dodge the debate and falsely, cynically invoke a disability rights law to justify actions that pose significant health risks, especially to people with disabilities and chronic illnesses. Going so far as to design and circulate signs and “ID cards” that incorrectly claim exemption under the ADA also undermines the integrity of laws like the ADA.

Granted, mask wearing and disability is not an entirely one-sided issue. But strident, unsubstantiated claims don’t help anyone, least of all people with real conditions that really do make wearing a mask difficult or impossible. Fortunately, these issues are well-charted in past ADA rulemaking and, and clear guidance is readily available that takes everyone’s needs and priorities into account. Sound interpretations of the Americans with Disabilities Act include the following points:

• Some disabled people really can’t wear face masks, and nobody should try to force them.

• Simply declaring that you “can’t” wear a mask, or presenting a home-made card saying so, isn’t enough to let you off the hook.

• The health risk to others is imminent and serious enough to outweigh a person’s individual right to go without a mask in a crowded indoor space, even if they have a disability that prevents them from wearing a mask.

• The ADA requires retailers and service providers to offer online ordering and delivery, curbside service, and other forms of individualized accommodation so someone who can’t wear a mask can still be served, without risking other people’s health.

• ADA has never guaranteed a disabled person exactly the accommodations they want. It’s always a negotiation among viable alternatives. So providing service in a way the person may not entirely prefer can still be considered equal service under the ADA.

These are all things actual disabled people know quite well. It seems like it’s mainly people who are new to using disability rights laws that are confused about it and think the ADA lets any disabled person do as they please in all situations. Disabled people know better. We aren’t always happy to accept these limitations and secondary alternatives. But we usually make our peace with them because we understand that equal access doesn’t always mean exactly the same. And we go into situations calling for “reasonable accommodations” with a number of workable contingency plans in mind, because we know we don’t always get exactly what we ask for.

This all demonstrates that it really is damaging to cynically misuse disability rights laws. It reduces their credibility and long-term viability. It’s also interesting to note that at least some, (maybe a lot), of the people who are most apt to claim ADA protection for not wearing a mask, (and maybe for other purposes too), are philosophically among those who tend to complain that laws like the ADA are too much of a burden on business, or too much of a curb on freedom. It’s a case of “the ADA for me, but not for thee.”

2. Disabled people feel more than one way about COVID-19, much as we do about “health and safety” in general.

For most of my life, I have viewed the balance between safety and freedom for people with disabilities as a stark, simple binary. You’re either in the safety and security camp – supporting measures and programs that shelter and protect us – or you’re for freedom and personal choice – affirming disabled people’s right to take risks, and our responsibility to engage with the wider community rather than hiding from it. Of course, it’s never that simple, and I’ve always understood that. But I have never had my views and allegiances on safety and freedom scrambled and reshuffled more than they have been by Covid-19. That’s because while most of us with disabilities are at higher risk from the virus, individual disabled people’s responses to this risk vary widely.

Some disabled people are frankly terrified of COVID-19. We are afraid of the medically established higher risk of the virus being life threatening to us, afraid of being overlooked, and afraid of being denied equal access to treatment because of our disabilities. This leads many disabled people to strongly resent and oppose those who assert and flaunt their individual freedom not to take precautions.

At the same time, some disabled people feel more acutely hurt by isolation, dislocation, disruption, and restrictions, than by fear of COVID-19 itself. They speak out about being unjustly restricted. They interpret precautions meant to protect people, (especially at-risk disabled and chronically ill people like themselves), as more examples of ableist and discriminatory control over their lives.

Most disabled people probably feel some combination of the both, and with good reason. Unfortunately, it can be difficult to communicate this as clearly as we’d like in an environment where responses to the pandemic are starkly polarized. You either favor precautions and restrictions without complaint, or you’re a Covid-19 denier who doesn’t care about the health of your neighbors. Nuances get trampled.

But often these responses from disabled people in particular have less to do with Covid conspiracy theories and more with the longstanding conflict within the disability community and disability policy, between safety and freedom, between preventing harm and affirming “the dignity of risk.” This conflict existed long before Covid-19, and it’s equally polarizing and difficult to reconcile.

Meanwhile, this ongoing two-sided argument is cut across by a third priority, “public health” – a concept that doesn’t have a clear, stable interpretation or priority inside disability culture. In a global pandemic, disabled and chronically ill people rely on and disproportionately benefit from sound public health measures that regulate everyone’s behaviors in order to control the spread of disease. On the other hand, some forms of “public health” have historically been used to legally restrict, institutionalize, and eliminate disabled people themselves. There has long been a strain of eugenics in public health, or perhaps a philosophical overlap where “the greater good” is concerned. This makes at least some disabled people extra suspicious of public health pronouncements, recommendations, and mandates.

Another even more straightforward problem is that as almost always happens in a crisis, the quality of communication on Covid-19 to people with cognitive or intellectual disabilities has been spotty at best, at worst nonexistent. Many people with disabilities simply aren’t getting the information they need to process all of these conflicting needs and ideas. They either get outright misinformation and rumor, or reliable information in inaccessible formats.

Is it any wonder disabled people aren’t all on the same page? And really, is that so unusual? As many have observed before, the disability community isn’t a monolith. It’s not a comfortable realization, but it’s probably an important one that I will try to remember after the pandemic.

3. Under certain circumstances, disabled, chronically ill, and elderly people are still widely seen as acceptable losses.

For much of my life, I believed that the worst problem disabled people face is neglect and misunderstanding, or else a particular kind of sentimental goodwill – people who mean well, but say and do the wrong thing, or in good faith advocate outdated and regressive policies.

This view of ableism as a uniquely benign sort of threat is popular, not just among non-disabled people, but with many disabled people as well. But it exists alongside a deeper, sometimes repressed anxiety born of experience. Most disabled people at some time or another worry that they aren’t wanted, or that they might be viewed as expendable in a pinch. There’s also a dark history of disabled people being actively erased, through mass institutionalization, forced sterilization, and outright killing. And this is comparatively recent history, part of in the modern era, and not comfortably dismissed.

Yet, it’s all too easy in a supposedly enlightened age to think that actual hatred of disabled people is a thing of the past. It’s especially possible to think this if you are a disabled person fortunate enough, like me, to have a supportive, financially secure family and communities that accept and respect you. I’ve known intellectually that disabled people’s status and very personhood in society is always fragile. But Covid-19 confronted me like no other event in my lifetime with how close we are to being written off, not just accidentally, but intentionally, almost as a matter of principle.

From the very start of the pandemic, elderly, disabled, and chronically ill people heard the unusually clear message that we are less worthy of saving, that our lives are worth less. 

Members of Congress openly argued that high-risk Americans should be willing to die in order to keep the economy humming. The general public was told not to worry about Covid-19 because it would mainly harm people with “pre-existing conditions.” In fact, Covid skepticism itself is strongly influenced by the idea that the virus is really only a problem for others, namely elderly, chronically ill, and disabled people – as if that makes it less of a problem.

We hear this. We are listening. And it’s hard not to take it all personally.

Rarely have politics and social behavior felt quite this personal for people with disabilities.

It’s not just rhetoric and broader priorities either. Explicit triage policies were ready to be implemented in the Spring that would deny Covid-19 treatment to some elderly, disabled, and chronically ill people. And while some progress was made in fighting back and asserting our right to complete care, as cases climb once again these discriminatory and deadly decisions are already being made.

Alternatively, some recognize that we are the most at risk and in need of protection, but expect us to shoulder the burden ourselves by locking ourselves away entirely in our homes, while younger, supposedly healthier people mostly “get on with their lives” while Covid-19 runs unchecked. Some combination of general public health measures and targeted protection for those at highest risks seems like the most sensible way to go. But there seems to be little chance that such nuanced policies will be put into place during this pandemic.

Either way, Covid-19 has been a sobering lesson for me. No matter how successful, financially secure, and respected as I may feel, my identity as a disabled person means that I am, in some sense, a less valued member of society.

All three of these lessons I should have known all along. So should anyone living with disabilities and the everyday persistence of ableism, both petty and profound. The question I am left with is this: is it better to know the true depths of ableism, and contend with the disturbing implications? Or, is it more healthy personally for disabled people to live with the illusion that the kind of progress and acceptance we aspire to has already been achieved?

*** This article has been archived for your research. The original version from Forbes can be found here ***