With the rise of new variants and upticks in infection and hospitalization rates, Covid is creeping back into our consciousness. People who last wore masks in public places six months ago or more may be considering using them again. And some who lost track of their vaccination boosters a year or more ago are well advised to get back on schedule as soon as possible.
But many of us who are among the higher risk disabled and chronic illness populations have never entirely let up thinking about Covid, taking personal precautions, and advocating more cautious public health policies. Some of us have adjusted our precautions as infection, hospitalization, and death rates have gone down. But we have also continued to practice and advocate hybrid in-person and virtual work and meetings, keeping up with vaccinations, pushing for better indoor ventilation, and wider use of masking — especially in key public indoor spaces like hospitals, schools, and public meetings.
And for this many of us have received more than a little ridicule, contempt, and outright condemnation. The pandemic is over. Why are we still acting like it’s an emergency? People with disabilities and chronic illnesses who’s lives can still be disrupted or threatened by Covid also have to contend with self-doubt within, and shame from others around us.
But if we are asked to respect the individual freedom of people who have decisively dropped all Covid precautions, then surely people who choose otherwise should be respected too.
Unfortunately, people who are still concerned about Covid – who wear masks in public places and request certain professionals, like doctors and nurses, to wear masks around us too – are subject to a lot of everyday social pressure and gaslighting. We are pressured to get back to working on-site, and stop wearing a mask. And we are subject to gaslighting – repeatedly told that there must be something wrong, politically motivated, irrational, or even pathological with anyone who still takes precautions.
There is also a degree of self-doubt, especially in disability communities, about whether we overestimated the threat of Covid all along, or didn’t take it seriously enough. Were we too zealous about precautions, or not zealous enough?
The key answer at this stage may be to fight shame and self-doubt — for disabled and chronically ill people to reaffirm trust in our own instincts and reactions. Here are 5 feelings about Covid that disabled and chronically ill people, right or wrong, should never be ashamed of.
1. Being terrified that Covid-19 could kill us.
It was always smart for disabled and chronically ill people to be afraid of suffering and dying from Covid-19. No, Covid didn’t end up being as bad as the “Captain Trips” flu in Stephen King’s The Stand, but it really was devastating.
6.9 million people have died of Covid so far as of August 16, 2023 according to the World Health Organization. And 1.1 million people have died Covid in the U.S. as of August 12, 2023, according to the Centers for Disease Control. These are excess deaths from a cause that didn’t exist before late 2019, and which hasn’t gone away, even if it is less widespread and deadly than it was. And the lingering effects of Long Covid continue to unroll, adding to the toll of suffering, and further invalidating the notion that Covid is really behind us.
Covid was bad for everyone, and still is. But some disabled people had direct and specific medical reasons to fear Covid a lot more than most. Many disabled people had indirect and less specific reasons to fear too. It was always difficult to sort out the increased risk of catching Covid from the risk of Covid being extra hard to fight. But either way, there are millions of people with disabilities and chronic illnesses who have always had sound, rational reasons to be terrified of Covid. Covid was and is a real threat to disabled people, not a bogeyman.
2. Feeling devalued, forgotten, and abandoned.
The feeling of being expendable started for disabled and chronically ill people almost as soon as the pandemic was declared in March 2023. There were staff and ventilator shortages in hospitals. This resulted in emergency triage policies, discussed and sometimes implemented, that explicitly called for allowing people with disabilities and chronic conditions to die in order to reallocate resources to young and otherwise “healthy” people.
Most precautions were in some sense aimed specifically at protecting “vulnerable” people. But precisely because of that, the popular backlash against precautions felt like deliberately writing us off — consenting to our suffering and death. And some people made it explicit, arguing that losing vulnerable people was an acceptable price for preserving normal life.
Let’s not forget the weeks and months disabled and chronically ill people had to wait in some states between vaccines being introduced and being allowed access to them. Not prioritizing by disability felt at the time like a mistake, possibly due to fundamental misunderstanding about disabled people.
Finally, the ending of official Covid policies, and shaming those who are still worried, have underscored for many of us the feeling that even our supposed allies have washed their hands of us, and have no time or patience for our ongoing worries. In some ways we are more completely on our own now than we were in the peak of the pandemic.
3. Feeling trapped and disrespected by Covid precaution policies.
As so many disabled people fought for stronger precautions and not ending them, others of us found them an extra burden because of our disabilities.
For one thing mask wearing and isolation were especially hard on people with certain specific types of disability – such as lung conditions, autism, and some kinds of developmental disabilities. On the whole, Covid precautions were necessary to protect disabled people. And lots of people did make false disability claims about not being able to tolerate masks. But some of us with very specific conditions actually do have a genuinely hard time wearing masks. Maintaining isolation in nursing facilities was critical. But this isolation was also terrible for residents. Remote schooling was a boon for some disabled kids, as remote work was for many disabled adults. But remote participation didn’t work for everyone, and disabled kids especially suffered from lack of school support services and socialization.
Disability and chronic illness communities never fully figured out how to reconcile fighting for precautions while sticking up for flexibility and accommodations as well. Nevertheless, Covid debates have caused certain disability communities to feel even more ignored and disrespected than usual by broader disability activism and culture. They deserve to have their objections heard and needs respected, if by nobody else than by their fellow disabled people.
4. Continuing to take precautions.
Most official advisories still advise high risk people to take individual precautions. But prominent politicians of all political stripes are not just celebrating the supposed end of Covid, but actively urging people to drop precautions. Public shaming of people who still take precautions is being both passively and actively validated. It gets harder and harder to wear a mask in public without being stared at or harrassed.
Even if Covid really does fade into a manageable form of flu, it may make sense to use masks and sometimes practice some degree of isolation in response to periodic surges. These may simply become new good practices for people who easily catch illnesses and those who because of disabilities have a much harder time coping with serious flu. At the very least, masks should be viewed as no more weird or stigmatizing than wheelchairs, guide dogs, or hearing aids.
5. Still being afraid and angry.
Covid is still a risk to people with disabilities and chronic conditions. It may be more of an individual danger now than a risk to broad public health and social order as it once was.. But even that could change at literally any time. If nothing else, it is another illness added to the list that disabled and chronically ill people have to contend with every year, any one of which can throw our lives into chaos or threaten our survival.
But now, we also have to deal with a popular cynicism and political stigma attached to any discussion of it at all. Early on, Covid revealed a few examples of society cooperating to protect disabled and chronically ill people. But it didn’t last long. Those of us with disabilities or chronic illnesses discovered some of the limits of non-disabled people’s commitment to protecting us. We found those limits to be much more narrow than many of us had thought.
That’s reason enough to still be at least a bit afraid and angry and angry about Covid and the social pressures and politics that still surround it.
What states, the federal government, and politicians should be saying and doing about Covid is still a critical discussion. But most high risk people first and foremost have to decide every day what we will do to protect ourselves – and how we will negotiate the way our friends, families, coworkers, employers, teachers, doctors, and neighborhood businesses respond to us.
Those of us with disabilities or chronic illnesses shouldn’t let ourselves be pressured or shamed about how we approach Covid, even now. That should be something we’re good at. After all, people with disabilities and chronic conditions have more experience than most doing things and using tools that other people don’t. And we’re used to taking flack for it from people who don’t understand why we do what we do, and who, frankly, think that we’re weird.
So as long as we are thoughtful, analytical, and driven by both practicality and principle, then it shouldn’t be a problem for us if non-disabled people think our ongoing response to Covid is weird.
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