My experience entering year 4 of the COVID-19 pandemic as a disabled medical sociologist
Today I am exhausted. As we approach the end of the fourth February of the COVID-19 pandemic, I am hopeful, I see change happening, but the length of this journey has absolutely drained me. I’m not alone in this—most of us who have a realistic understanding of COVID-19 risk knew this point was coming.
The breaking point.
Unfortunately, those of us who are COVID-19 realists and were disabled prior to the pandemic also predicted the breaking point would be lengthy. More of a “breaking period” than a point. I am so relieved that non-disabled people are finally starting to take action. At the same time, I want to scream every time a non-disabled COVID-19 realist says something along the lines of “Nobody could have predicted this!”
Because, quite frankly, it’s not true. Disabled people predicted this. Most non-disabled people refused to listen. This includes some very important and powerful people in medicine and public health. Some of those people still refuse to listen, even as they adjust their own behavior and approach to advising others on risk mitigation for COVID-19.
To give some examples, this can include claiming that nobody predicted that people would deny COVID-19 risk and/or normalize it, but it can also include things like blaming anti-vaxxers and people who support former President Donald Trump for this mess. The most common means of ignoring disabled people, though, has been the misunderstanding by many in medicine and public health that their colleagues’ ignorance of COVID-19’s lasting effects on the human body is unintentional, and that their peers’ unwillingness to confront COVID-19 risk head-on has something to do with their fear of patients lashing out and not because they themselves are pretty much over the pandemic.
There are also some takes I find quite humorous, given my own position as a medical sociologist who studies behavior and ideology related to health risks. Some of the COVID-19 realists who were non-disabled prior to COVID-19 seem to think that (1) doctors with long COVID will take action that influences a cultural change in medicine to value disabled bodies, and/or (2) if enough people in medicine and public health get long COVID scientists will be forced to find a cure. If you don’t believe me on point 1, see point 2—if you can’t accept that chronic illness is not curable, you will NEVER influence cultural change in medicine to value disabled bodies. Besides this, any disabled academic can tell you credentials don’t mean shit in a system that has decided you do not belong.
The sad reality is that doctors who catch long COVID will not maintain a level of power that is equal to their colleagues—their opinions will be dismissed, and many of them will be pushed out of medicine for “failing” to “overcome” their illness. Once you are disabled by chronic illness, that disability becomes a master status in context of any medical encounter. It does not matter that you are an MD, a PhD, and MPH, or all three—in that appointment, you are a disabled patient, and that leaves you with very little power to convince non-disabled clinicians to do anything differently. In fact, it leaves you with very little power to even attempt a dialogue.
I think people in medicine have had an especially difficult time coming to grips with the full reality of the COVID-19 crisis because that reality includes that medicine and healthcare in the United States have always operated primarily as businesses catering to wealthy, white, and non-disabled, people. Being truly realistic about COVID-19 includes acknowledging that the pandemic is not something that has happened to healthcare and medical actors, but instead, is something resulting from a long history of intentional actions by powerful actors, including those in medicine, to normalize health risks resulting from or exacerbated by the pursuit of wealth as long as they harmed social undesirables. It doesn’t feel great to admit you were part of the problem that is now harming you, but it feels especially bad to admit you could have prevented the harm you are currently experiencing if you had cared about it when it was harming others. As someone who studies behavior and ideology, I can tell you that most of us consider ourselves to be “good” people. As someone who has studied “deviant” behavior quite extensively, I can also tell you that most of us will try to rationalize a deviant behavior—the rationalization helps ease the cognitive dissonance of “I made a decision I knew was potentially harmful or frowned upon and something bad happened” when “I am a good person.”
So, as we enter the “breaking period” of the pandemic, while I am hopeful, I am also tired, and I know I am not as optimistic about the situation ahead as many of my non-disabled colleagues in health sciences are. Because, while we’ve all seen eugenics before, it has always been quite proximate for the disabled community. Most of my non-disabled colleagues’ most proximate understanding of eugenics are publicized genocidal events, like those that occurred during the height of colonial imperialism or World War II. If so many are ignorant of the several genocidal events occurring after the Holocaust, including ongoing events that pre-date the pandemic, how can we expect a mass reckoning with the eugenics happening with the “let it rip” approach to (not) mitigating the risk of COVID-19? And how the hell can we expect it to take the form of a single breaking “point,” or to occur any time soon?
The answer is, we can’t.
It’s not the answer people want. Because it leaves other questions with much less clear answers.
How do we get enough people with power in the right institutions to recognize the magnitude of the hurdle? And by this, I also mean recognizing what the true hurdle is, or really what the hurdles, plural, are—white supremacy and ableism. If we do achieve this recognition, we are still left with the question of how to address the hurdles. Which is why I feel my stomach turn every time someone claims that COVID-19 will be resolved soon, that COVID-19 will be the end of capitalism, and that we will eventually be forced to reckon with related issues like climate change. Unlike my peers who were non-disabled prior to the pandemic, my hopefulness is dampened by the strong understanding that reckoning with capitalism, etc., is unlikely when so many are unable to grapple with the reality of the hurdle because it would mean also confronting their own role in upholding white supremacy and ableism. That’s not exactly aligned with the understanding by most of us that we are good people.
If you think I’m overblowing the impact of the “I am definitely a good person” mentality, take a look at the ways people in power who have started to take steps to address COVID-19 risk have approached those actions as related to some other risk.
Need to address air quality? No problem, we’ve ignored gas stoves forever, what a convenient alternative to admitting air quality is important for mitigating COVID-19. Kids seem to be getting sick more often and with more severe and/or uncommon illnesses? Well, let’s promote this amazing concept called “immunity debt,” the anti-vaxxers have been talking about it for years so we will have AMAZING support in terms of quantity. V widespread acceptance of immunity debt, we deserve a pat on the back! Too many people unable to work due to long COVID? Too much absenteeism because workers get infected with COVID several times a year? Well, let us tell you about how we can tackle both of those things at the same time! Didn’t you catch the rumor that employees just don’t want to work anymore? Burnout is high and motivation is low, obviously! Too many people catching COVID in the hospital? Well, my goodness, haven’t you heard about the microbiome??? You need to go play in the dirt (cc: immunity debt thesis).
I could go on, but I won’t.
I wish more people understood that people in power aren’t ill informed of the risks of COVID-19, they are willfully ignorant of them. I wish more people understood that this willful ignorance is because they DO NOT WANT TO CHANGE. They do not care about the harm they are causing because they do not value the lives of the people being harmed. Some even think the people being harmed should be eradicated for the “greater good” (of white, abled, people).
Right now, my experiences as a disabled person are overriding any and all others when it comes to understanding the current circumstances of the COVID-19 pandemic. Yes, I am tired because this pandemic blows and people keep denying it. This is the tired ALL COVID realists understand. The part that only my peers in the disabled community pre-COVID understand is the overwhelming exhaustion that comes from watching non-disabled and newly disabled people ooze optimism and excitement that there seems to be increasing acceptance of a need to mitigate COVID-19. And it’s not the optimism/excitement itself that is so exhausting, it’s knowing that disagreeing or bringing up disabled experiences will come off as being a total downer. Knowing that I can’t speak about how buffered my optimism is compared to my non-disabled colleagues unless I am speaking to the community of disabled people I interacted with before the pandemic means sitting with a level of discomfort I’m not sure most abled people have experienced, one I’m fairly sure most white abled people have absolutely NOT experienced. A feeling of discomfort that we can theorize about confronting all day, but in reality, is not something people WANT to subject themselves to if they can avoid it. And this is the part where my professional expertise comes back to haunt me—I know the data back up my anecdotal experiences that people will pretty much always try to avoid the discomfort. It’s one of those things that seems obvious but, when talked about, is frequently dismissed. Because good people should have no reason to confront discomfort—after all, good people don’t do things that harm people to where they should need to get uncomfortable with their own actions! And around and around we go.
I want to get off this ride, but I can’t. At the same time, I feel like there is an upper deck of the merry-go-round, and the non-disabled realists are clustered on that part of the ride knowing it will eventually come to an end. If you can get off the ride, why would you care that the lower deck is still spinning?
So, while most of my colleagues are tired from fighting this “uphill” battle, I’m here with the pre-COVID disabled community stuck at the bottom of what are obviously stairs. You don’t notice that the hill has stairs if you can use them, at least not until someone points out “um, I can’t use the stairs…” We sit here, watching you joke to each other about the tough journey, but you can joke because you can visualize an end. I don’t think anyone can really understand the exhaustion of sitting at the bottom of the stairs, stuck, watching people who are on your side in theory miss the part where you haven’t followed them up the stairs.
Lately, existing in society feels a lot like staring down a huge flight of stairs, the only avenue forward, from my wheelchair. Absolutely impossible.
Where is our end?
I created this digital self-portrait in Spring 2022. At the time, I had just learned I would be teaching again in the Fall ’22 semester, and that I was unlikely to be approved to teach online. Just under a year later, the only thing that has changed is I now feel that the staircase has grown several flights.
To everyone who has ever had to say “no, I really can’t use the stairs.” I don’t know what our path forward is, but I am secure knowing our community has only gotten tighter during COVID.