The Other Friends Lost to Covid
Being disabled and immunocompromised in this pandemic means telling people what they don’t want to hear. Who would’ve thought most abled friends would react this badly?
I’ve lost three people I know to Covid, but this is about the many people I’ve lost to conversations about Covid and disability.
We’re all talking about it. Disabled people are talking about how awful it goes down when we try to raise issues about disability and/or Covid with abled people in our lives and networks. It is something else! People who have more typical reactions to any other conflict, disagreement, or gentle reminder get angry, defensive, and block or ignore on this issue.
Others are writing about this subject too. See, for instance, “Disabled People Aren’t Trying to “Control” or “Attack” You About COVID Precautions. It’s About Our Rights and Safety,” by Alana Saltz.
Phew, this has been absolutely wild for me. I am triggering people I had no idea would be triggered by me suggesting that they tweak how they use language, consider making their programming safe and accessible, learn about problems with the groups or people they support or attend, learn something about ableism, etc. By and large, these are people who consider themselves leftists or liberals and regard themselves as warriors for good causes to protect vulnerable people.
Some background: I was already somewhat immunocompromised and became severely immunocompromised by Covid in 2020. It shows up in my blood work. My immunity markers are depressed and amused. I have been forced out of my double mask briefly a few times and got really sick every time. That seems like an impossible or fake story, and I really wish it were. I was bed-bound and struggled to even work from home for 1.5 years with Long Covid, a real brute of a disease. Even after improving, real exercise is out, I’m infection-prone, and I have a Covid-induced heart condition. I get boosters, even though they set my health back for a month or more each time, but I also don’t generate as many antibodies as others.
People like me are talking about disability more in general right now. Who do you guys think are the people dying still? It’s us. “Vaccinate, wear a mask, take Paxlovid, you’ll be fine.” That’s your body, not our bodies.
We are being increasingly shut out from being able to participate in society, get our medical and personal needs met, and support ourselves financially. This isn’t theoretical. It’s happening to me. It’s happening to us. We are being drowned out by voices telling us the world is safe enough. We are being smothered by the loud silence of our peer groups not speaking up on our behalf. We are being gaslighted by people who were extremely vocal about the lack of Covid precautions during Trump—or even during the height of Omicron—who are now eating out at restaurants and holding or attending gatherings that exclude us and spread disease. They never admitted that they shifted. They just stopped talking to us. We’ve been abandoned, gradually and steadily, by anyone who used to like our Covid tweets, while they are back in crowds without masks.
I already learned, long before Covid, that good friends will unexpectedly disappear when you become disabled, but a few surprising people will show up and be supportive. Disabled people all learn that. Some of us, if we live through waves of disability and periods of greater ability, forget and learn it again.
This is all different though. I have never experienced anything like the often rapid, extreme, defensive, angry, belittling, blocking, etc. responses I have gotten from people around disability and Covid of late. These are people who would never engage in this way on race, gender, income, or sexuality.
Some examples:
A long-time friend thought nothing of explaining why it was important to reopen all schools in 2021 in reply to one of my tweets, knowing my health status. She was horrified by me being only slightly confrontational on Twitter. I got a private lecture about my tone and discourse. I kept trying to bring the conversation back to my health status. She kept pushing my tone as the important conversation. We are not friends anymore.
I expressed to one guy that he not use “virus” as a metaphor for human behavior in a DM. I kept it pretty gentle. That’s an old thing in disease discourse! Don’t use cancer as a metaphor either. Right now there are stakes around minimizing or simplifying viruses. The NY Times had a terrible example of this:
The guy who I was talking to about the virus-as-metaphor issue is a minor public figure, positions himself as a leftist, an intellectual, and a human rights fighter. One might think I’d get a conversation of some interest around the question of disease and metaphors. Or, “Hmm, what do you mean? What can I learn?” Instead I got a long, rude lecture that included a line about how we “all experience viruses the same.” He knew I had Long Covid.
This white guy writes about race and policing. Would he tell a person of color in his mentions that he knows more than them about race discourse? I mean… maybe. But would he do it so brazenly and assuredly? Also maybe, I guess. (We don’t talk anymore, but mostly because he called me “manipulative” for bringing up this conversation at a future date. You see the point is not that I have concerns about viruses. It’s all about the timeline by which I communicate my concerns.)
It also went down with another guy, a real leftist for the cause. He was someone I talked to all the time, sometimes disagreeing without conflict. He tweeted something that sounded skeptical to a disabled woman, when she pointed out ableism on the left. There were about five people in that conversation. (Aside: The left is pure shit on disability issues, especially on Twitter. On a near-daily basis there are leftists mocking that “ableism” is a real concern.)
Anyway, I responded to the disabled woman, backing up the example she gave with a few more examples. I went on for four tweets. I was focused on supporting her. She and I continued discussing for a bit. The guy took it all personally: he gave me a private lecture about how I had tweeted at him directly 24 times (I didn’t) and that it was inappropriate. It seems to me that he was triggered by whatever information I presented, to a group of people, about ableism on the left, and became irrational, perceiving something to be happening that wasn’t. There was no rational conversation after that. I was the problem, because I had allegedly tweeted at him 24 times, which never happened.
Forget that my life will never recover during this pandemic or that I need two surgeries that aren’t safe to get right now. Forget that the left’s ableism is a huge part of that problem. We no longer speak. Years of productive conversation couldn’t make up for his perception that I tweeted at him a lot. Or something.
For awhile, I was really trying to be gentle and upbeat when I educated people. It didn’t make a difference. I may as well have been cursing.
I let a friend know that her vaccine mandate for a meeting (“fully vaccinated” with two shots) wasn’t actually useful in May 2022, if her point was protecting the medically vulnerable. She also needed a mask mandate. She got angry at me and blocked me. She and I used to hang out every week.
This also happened three more times over the last year when I briefly mentioned to people that in-person programming without mask mandates is exclusionary and harmful. That should be prima facie to everyone except right-wing Covid denialists, no? But instead, in each case, I was met with something fierce and reactive immediately. I cannot imagine if I had said, “Oh did you notice this event is excluding Muslims or queer people?” that I would have garnered the same reactions.
We shouldn’t be having any events now, weirdos.
A temple decided to reopen in-person services at one point in fall 2021. The language in the email announcing this was harmful, including that “some people need to meet in person for their mental health” while “some people need to stay home to protect themselves.” When people pointed out that, actually, immunocompromised people are dealing with the worst mental health issues now but still can’t meet in person, we were given antagonism in the place of empathy. We were accused of not understanding that mental illness by itself is just as real and serious as being immunocompromised. The temple offered some crappy online services but mostly went back to in-person programming. Notably, it closed again during the Omicron surge. So it wasn’t about mental health. It was about the safety of the majority. I am no longer a member. Neither are several of the other disabled people affected by that conversation.
There are different ways these conversations go. Often, people refer to their own risks to belittle or dismiss my risk concerns. Lateral ableism is common in disability discourse. Everyone has some level of risk. It’s worse for many of us. It’s so bad for many of us, that we cannot safely get surgery. Is that something you can’t process or believe? If so, how is that different than any other disease denial?
Often in those conversations, the people who claim disability to minimize another person’s disability won’t disclose their own disability. Well, sure, if you have so much shame around your disability that you can’t name it, maybe you should consider if you’re the appropriate person to be judging other people’s risk levels and concerns. And why do you only bring up your secret disability to minimize disability access issues for others? (This sounds like a niche conversation; no, it’s incredibly common.)
Sincere question: What is wrong with all of you? Are you that anxious about Covid and disability that you can’t calm down, listen to our needs, and maybe adjust? Is it that you realize, at some level, that your actions are harmful and don’t want to hear it anymore, because you made a personal calculus that your mental health would benefit from some level of “moving on”? You’ve decided that you deserve this after a hard couple of years, and you don’t want to be confronted with where that could cause others harm? Or, is it that the virtuous amongst you rely on never being told that you might have blindspots?
This behavior is hateful, everyone. What is wrong with you.
