Two years into the pandemic, I’m not sure if I can trust nondisabled people anymore: It feels like I am seeing a guy stick his head into an alligator’s mouth over and over
As a multiply disabled person, over these last two years I have come to an uncomfortable conclusion: I can’t trust nondisabled people, as a group.
Like many people in the disability community, I am high-risk according to the Center For Disease Control’s (CDC) list of health conditions that put people at risk for complications or death from coronavirus. Watching various government agencies, the medical-industrial complex, and organizations such as the CDC variously fumble and botch their responses to the pandemic—and seeing some of the nondisabled general public responding by avoiding vaccination, declaring coronavirus to be a hoax because right-wing TV personalities and former President Trump told them so, or dive deep into Covid trutherism—during this time has felt akin to watching a guy stick his head in an alligator’s mouth, screaming at him not to, and then being unsurprised when the alligator chomps down on his head.
I am aware that what I address in this piece is probably going to sound misanthropic, which is not unusual for me personally, but which understandably might upset people—even though my feelings on this topic are more nuanced than the title suggests. Are there nondisabled people who I can trust? Sure: the people I already know, such as my family and close friends, who have been vaccinated and boosted, are following masking and social distancing recommendations, and are committed to isolating themselves if they have covid symptoms. But the average person on the street? Even if they mask up in a restaurant, store, or other venue because they have to, I can’t be sure that they are not doing so begrudgingly.
There is, of course, plenty of blame to go around: at a more structural level, former President Trump and right-wing grifters who have massive platforms proclaiming the virus to either be not that bad or a hoax; so-called “comedians” who host popular podcasts and disseminate vaccine misinformation to millions of listeners; and the Biden administration, which has focused on getting people “back into the office” during an ongoing pandemic that has killed almost a million people in the U.S. rather than committing to solutions that would mitigate risk. I should note here that the Biden administration, although it lacks the outright scorn and derision for public health that the Trump administration did, has also done the absolute bare minimum in supporting a comprehensive masking, social distancing, and testing strategy — instead preferring to try to shame people into getting vaccinated using inflammatory language (which did not work). This bare minimum has also included sending four free rapid Covid-19 to each household regardless of household size, and entitling each person in the U.S. to three disposable masks each. WOW, four tests and three whole N95 masks? AMAZING! Except it isn’t, which any chronically ill, disabled, or high-risk person could tell you if we had been listened to from the start—but we were not. The CDC finally listened to disabled, immunocompromised and chronically ill people after those groups sounded the alarm after some hospitals made patients and visitors exchange their N95 and KN95 masks for less safe surgical masks as an entry requirement.
Speaking of listening to disabled people, I’m not sure why so many state governors (including Gavin Newsom, the governor of my home state of California) are yet again pushing reopening, but it seems like this would be a good time to reconsider that because of variants. It just seems like something to consider, even if, as Newsom pointed out recently, coronavirus does not have an end date. But the response has been botched so many times—by the government, by the news media, and by individuals who think that the United States’ valuing of PERSONAL FREEDOM over everything else means that they get to act like the pandemic is a.) not happening and b.) asking them to do very simple things, such as mask up, socially distance, stay home if they’re sick or have been exposed to the virus, and get vaccinated somehow equals a totalitarian infringement on their rights instead of being basic public health measures. I have had many, many moments where I want to yell “are you fucking KIDDING ME?” as all of this unfolds. It feels like I am seeing a guy stick his head into an alligator’s mouth over and over. Mask mandates are removed, and then case numbers go up? Get your head out of the alligator’s mouth—you should have learned your lesson the first time, dammit. Reopening our “great downtowns” instead of continuing to support people working remotely? DON’T PUT YOUR HEAD IN THERE AGAIN. Reporting covid numbers in a different way, or just not at all? Not again! *jaws clamping shut* SIGH. We told you.
I’m aware that many people are tired of all of this. I am too, and I have a disability—fibromyalgia—where one of the main symptoms is chronic fatigue, so while I’m not about to turn this into a “you think you are TIRED? I AM TIRED ALL THE TIME” screed because that would be rude and inaccurate, I also try to be aware that most nondisabled people are not exactly living it up during this bizarre time—they are not all escaping to space for a few minutes like Jeff Bezos or Richard Branson. However, nondisabled people have also been the ones who throw tantrums in grocery stores over being asked to mask up, aggravate for full reopenings of public places, and generally act like there has not been a deadly pandemic going on since 2019.
I’m left wondering what it’s going to take for nondisabled people to listen to disabled, immunocompromised and chronically ill people, but if there’s one thing you should take away from this piece, here it is: you do not want to get this virus. You can die from it. You can also be left with long Covid, which, speaking as someone who already has an illness with symptoms similar to long Covid: you do not want that, either. You do not want a lifelong health problem that permanently alters your relationship with your body—and with it, your ability to work, have a social life, exercise, sleep, and basically live without being in pain or tired all of the time. So, if you’re the type of person who thinks “Oh, if I get Covid, I’ll probably be fine,” I urge you to take a minute and think about what might happen if that does not end up being the case.
If you’re reading this and thinking, “But I’m nondisabled and I want to be an ally! How can I win back your trust?” Start by seeking out the perspectives of disabled, chronically ill, and immunocompromised people on social media—there’s a hashtag on Twitter, #DisabilityTwitter, that is a good place to start, as is #NoBodyIsDisposable if you want more perspectives specific to the covid pandemic. Try not to limit yourself to only following the “bigger” disability accounts on social media, either; oftentimes, smaller accounts (with less than 1,000 followers) are just as engaging and insightful when it comes to giving a clearer picture of what it’s like to live with a disability during this pandemic. Keep in mind, too, that our perspectives are just as varied as that of any other minority community; if you’ve met one disabled person, then you’ve met one disabled person. Actively listen to disabled, chronically ill, and immunocompromised people when it comes to pandemic-related issues—we are often ahead of the curve when it comes to the dangers of terrible ideas, too-early re-openings, and anti-vax rhetoric.
Creating a safer and more inclusive world for disabled, chronically ill, and immunocompromised people isn’t going to happen overnight, but what would that look like in the context of this pandemic? I think it would look like, at its most basic, dirt-on-the-ground level, still acting like the pandemic is a thing—that is, NOT taking President Biden’s word that covid “no longer controls our lives” while he says that the U.S. needs more covid funding at the same time. If you’d like to advocate in favor of disabled perspectives as an ally, that’s great, but it is also important that you boost the perspectives of disabled, chronically ill, and immunocompromised people instead of restating those perspectives in your own words, or talking over us in the name of allyship. On a more day to day level, you can keep masking up, get your booster shots, and socially distance when appropriate—and stay home if you have covid symptoms or have tested positive.
I don’t trust that you’ll listen to me about any of this if you’re nondisabled. In the interest of combatting my natural cynicism, however, I hope some of you will prove me wrong.
Anna Hamilton (she/they) is a nonbinary disabled feminist writer whose work has appeared in Bitch, Teen Vogue, Rooted in Rights, TalkPoverty, Shondaland, SICK Magazine (UK) and many other publications. They have a Master’s degree in Women’s and Gender Studies from San Francisco State University. A founding blogger of the popular social justice blog Feminists With Disabilities/FWD, which ran from 2009-2011, they currently produce a humor newsletter entitled Citizen Cane. You can follow them on Twitter @annaham360, or visit their website at annaham.net.
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