On Crip Invisibility During Pandemia: Ushering in the Age of Ghosts
By Elizabeth Pellerito
Originally Published in 2021
Cold water is trickling down my leg again. I brace against a wall for balance, swipe my calf with the opposite foot, check to see if the fabric of my pants has darkened. It hasn’t. I glance around to see if anyone has noticed my weird little ritual, which repeats throughout the day.
They haven’t, for two reasons: one, because the dripping was never there to begin with, and two, because almost nothing happening inside my body is visible to anyone around me. This is a simultaneous frustration and relief.
My body is, well, not reliable, and for a long time, I thought it was not to be trusted, before I learned how to listen to it. The water running down my leg is the latest iteration: other days it’s been a buzzing in my foot, heat flashing on and off on the side of my thigh, and visible muscle fasciculations that flutter like butterflies just under the skin nearly constantly – not to mention the skin flaking off, and the constant pain and fatigue. Pain is pain, and mostly manageable, but nobody prepares you for the fatigue, the way you can feel, right down to the cellular level, the sheer exhaustion of your body fending off false enemies over and over again.
How is it possible, I wonder, that none of this shows up on the surface? It does, sometimes – but mostly only to other crips. There’s a shared language among us, an instant recognition of winces, sighs, stretches, of the way we learn to avoid sidewalks without curb cuts and buildings without elevators. We share a secret network of recommendations for the best pain cream, the rare doctor who doesn’t roll their eyes at a new symptom, the fragrance-free cleaners. We absorb the detritus of the pollutants and trauma that surround us, and watch it all bloom on our skin and in our nerves, muscles, sinews. We are the canaries in the mines of late stage capitalism, but nobody is watching us falter in our cages.
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Being crip means being simultaneously invisible and hyper-visible: either an object of pity or an object of inspiration, but an object nonetheless. Being crip with an illness that is itself mostly invisible makes things trickier, because the moment when you stop passing as able-bodied is the moment when people stop looking at you and start looking through you. Sometimes it feels like we have a force-field around us. You avert your eyes or speak to the person we’re with instead of us. Once I brought my rhinestone-studded cane to a hip hop show, alone, in a tiny club. There was a two-foot circle around me and the emcee avoided my gaze in a crowd of 20 gathered in a half-moon around him. As distressing as this can be, there’s also sometimes a comfort in it: being invisible can feel like a privilege when the alternative is constant comments, questions, or pity.
Invisible criphood also means that you’re likely to stop showing up, becoming invisible in another way. Easier to forget about. Going to a rally or a concert might be a hassle to an able-bodied person, but it can seem insurmountable for sick folks: taking a shower, getting dressed, walking to the car or the bus or the train, sitting on a chair that may or may not cause pain or else standing and waiting for your hip to give out, encountering a room full of noises and perfumes and other sensory assaults, and then doing it all to get back home again, is just beyond my capabilities sometimes. A couple years ago I messaged the organizers of a protest on Boston Common to ask if there would be chairs in the front for people who need to sit. If I was going to take a train and then walk to the Common, there’s no way I could also stand for that long. The organizers said they weren’t sure if that was a possibility. Without assurance, I couldn’t risk it – and so I stayed home. One less body in the crowd, one less voice calling for justice.
If people do acknowledge us sick folks, it’s with suspicion about why we don’t seem to have the same body we did yesterday: why we suddenly have a limp or need a cane when we seemed fine the day before. The ADA tells us that accommodations need to be “reasonable” - but also that we aren’t the ones to determine what is reasonable for our own bodies and minds. There’s no room in reasonable accommodation for an utterly unpredictable condition from one day to the next. Either you’re sick, or you aren’t. Either you’re able-bodied, or you aren’t. (An aside: The most dastardly form of invisibility is self-inflicted. My internalized ableism is constantly asking me whether my sensations are real, whether I’m sure I’m not just faking it. Whether I’m not just boring everyone by telling them – again – about my weird symptoms, whether I shouldn’t just suffer in silence. Verbalizing pain can be a way of staying honest – if I deny it to you, then I also deny it to myself.)
I tend to think that what’s at the root of this driving desire to determine causes, to create a logical narrative that places the blame for our unreliable bodies on mental illness, or too much gluten, or not enough yoga, is the fear of confronting the fact that all of our bodies are cellular chaos machines that can go haywire at any moment. The things that happen in my body make no sense – and if it can happen to me, it can happen to you, unless you’re willing to engage in enough magical thinking to stave it off. If you can determine that I’m not doing enough of the right things, or too much of the wrong things, or that I’m just plain crazy, it reduces the likelihood of your own body breaking down in similar ways, right?
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There’s nothing like a global pandemic to bring this all home. As we begin year three of COVID times, there’s an almost nostalgic tinge to our conversations. “Remember how we all came together and had hope that things would change?” asked a friend wistfully. “How we cheered for essential workers and everyone wanted to do their part to flatten the curve?” Not all essential workers got applause – or access to PPE and basic workplace protections, I reminded her – and even then, before masks and vaccines had been declared the latest iteration of the culture wars, not everyone cared about flattening the curve. And the resentment has only grown in the time since then. I can’t count the number of times I’ve been reminded by people who purport to care about my well-being that “regular” folks can only be expected to do so much to protect vulnerable folks, and at some point the vulnerable need to take responsibility by staying home, fading further into the background. As if we haven’t been doing that all along.
Some time in the coming weeks, we will hit 1 million US deaths from the pandemic – and epidemiologists estimate that at least another million Americans have died from the ripple effects of the pandemic, mostly via preventable disease exacerbated by inaccessible medical care. The pandemic has been described as a “mass disabling event,” largely caused by “long COVID,” a set of physical, mental, and neurological effects on every major bodily system. Long COVID represents a stark flaw in the American obsession with fitness and wellness culture: the deal we make with ourselves that if we just count our steps every day, burn the correct number of calories, track our heart rates and meals with an increasingly invasive cadre of gadgets attached to our bodies, then we can buy ourselves health. All it takes is one infection, and you might join us, the growing ranks of the invisible.
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What will that world full of ghosts look like, I wonder? If the last two years tell us anything, it’s that those of us with visible and invisible disabilities will be pushed further and further into the background. If we want to survive, we will continue to be the ones to accommodate the not-yet-disabled, who will continue to weaponize the rhetoric of mental wellness in order to further a full-scale rejection of public health in favor of personal liberty. In order for the world to return to “normal,” we will face the choice between protecting ourselves (and, ironically, everyone else, since my immunocompromised body is far more likely to create new mutations of the virus than a healthy person’s) through isolation, and putting ourselves at risk to pay the bills.
Of course, there is another way. In an alternate future, we’ll collectively break the link between personal productivity and worth. In fact, we’ll just go ahead and break capitalism while we’re at it. Nobody hustles in post-pandemia cripland, because creativity is more important than brand. Nobody needs to work a side gig to pay medical bills, because there are no medical bills.
We will also fling aside our Apple watches and app trackers, because it no longer makes sense to obsessively track our individual metrics when we live in a world where the well-being of one of us is inseparable from the well-being of the community. We’ll live instead in crip time, where we slow down and move at the pace of our own bodies – at the speed of trust, as adrienne maree brown says. We will cue ourselves in to the speed at which wildflowers push themselves up in spring; the speed at which erosion happens on seaside cliffs. We will operate on scales of deep time and tortoise time, because the work will get done when it gets done and will be the better for it.
In our crip utopia, we will embrace what Rupa Marya and Raj Patel call “deep medicine” – the recognition that the health of Black and Brown people, indigenous people and people of the global South, and medically vulnerable people are all inseparable from that of the wealthy and privileged, and both are intricately interconnected with the health of our ecosystems. The concept of personal health is meaningless in a global context, and racial, economic, and environmental justice depends on it.
The paradox of being crip in COVID times is that we’re not just asking you to take basic precautions to protect us from the viral contagion that has already killed and will continue to kill so many of us. But we’re also asking you not to fear the dissolution of the boundary that keeps your healthy body from my chaotic one, your sane brain from my madness. Even if you’re not-yet-disabled, chances are pretty good that you’ll be one of us eventually anyway.
Acknowledgements: To learn more about crip identities and disability justice, start with Sins Invalid. Mia Mingus is fierce and righteous and you should read her blog if you don’t already. Leah Lakshmi Piepzna-Samarasinha’s “Care Work” taught me so much about crip doulas, which I want to be when I grow up, and just about everything else I didn’t know I needed to know about interdependence and care. On COVID-19 and public health, Ed Yong’s essays in The Atlantic are erudite and empathetic. Alexis Pauline Gumbs shows us how to live on deep sea time. Rupa Marya and Raj Patel’s “Inflamed: Deep Medicine and the Anatomy of Injustice” is a beautiful manifesto on the relationship between the individual body and the collective body. There are plenty more, but these are a good start.
