Listening to Long Covid’s Lessons and Teachers—Today and Tomorrow

One of the biggest myths about the disability community is just that: That it is a community. Instead, it is more a flock of starlings, whirling and whipping around each other, shifting in the gathering dusk, never still. Some peel off and are left behind; others are in the thick. Some think they are leading, at least for a time; others are overridden when they try to split away. Some may convince themselves that they have a single common aim and experience, and in the process, they accuse others of wrongthink, otherness, an inability to toe the line, to perform. You are birding wrong.

Disability is too large and complicated a cultural identity, one highly likely to be layered with others, for there to be a unified “community,” for any one bird to speak for all.

But people will try, because that is what people do. Prevailing threads and narratives of what disability is emerge, leaving others bereft, straggling behind on trees and power lines when they are too tired to go on, snapped up by predators who sense vulnerability and isolation. Some simply fall from the sky, plummeting to earth in eerie silence.

Harder still is life for the birds from another flock that blunder in and get swept up in the constant movement, so swiftly that there is no time to adapt or understand what is happening. Newly disabled people are notoriously difficult to reach and support, in part because so many are disabled in such isolated, prosaic ways. The survivor of a car crash who leaves the hospital without their legs. The person who gets dangerously ill and experiences severe cognitive deficits. The worker injured on the assembly line.

When these new birds enter the flock, other disabled people want to teach them. To tell them about the things they don’t know they need to know. Watch out, there’s netting there! That farmer shoots at birds. The clean drinking water is here.

Rarely is society presented with a moment when so many are simultaneously entering the flock while still remaining isolated as individuals. Covid has become a mass-disabling event—as many little birds warned—with millions of people experiencing what has come to be known colloquially as “long Covid.” A cluster of postviral symptoms that do not resolve, some severely disabling; people cannot climb a flight of stairs, let alone run a marathon. Something that is, for many, endured privately and helplessly, spinning in space, unable to move forward, to pick up the thread of the flock.

There is something deeply disenfranchising about long Covid, the product of society’s collective selfishness and sharp unwillingness to work for the benefit of all, the ferocious push to “get back to normal,” a harsh reality in 2022 as people decided the pandemic had timed out. As cases again rise, it’s painfully apparent that there is no moving on yet: There is adapting and shifting and finding new nesting places, but there will be no return to “before.” Not for the flock. Not for society. Even if society doesn’t yet know it.

Because long Covid is literally and figuratively exhausting, it is also profoundly isolating. Fatigue makes it hard to leave the home. Fear about personal health and safety adds another layer of complexity. These things are familiar to many people with postviral and chronic illnesses, many of whom spent years fighting for a diagnosis in the midst of mockery and cruelty, sometimes from the very same “young and healthy” now trapped at home, unable to climb their own stairs; the pop diagnosis of “yuppie flu” cuts deep.

These are the very struggling birds most in need of reach, who need to know about the world over the horizon, how to survive in the coming years and how to advocate together for our collective future survival. For other survivors of mass societal cruelty, there are mechanisms: In the United States, for example, there is a web of mass-shooting survivors who gather in the aftermath of fresh violence to offer help and support to fellow survivors who are looking at lengthy recoveries and deeply changed lives. These birds balance their wobbly, confused friends, helping them stretch their wings, find their voices, leaving behind their phone numbers and a “text me anytime.”

There is something deeply disenfranchising about long Covid, the product of society’s collective selfishness and sharp unwillingness to work for the benefit of all.

Those who are not disabled might not understand what it means to be, or become, disabled, the myriad of things you have to deal with simply to stay alive in a world where people do not want you to be alive, or do not care enough to know that you are alive. That flock of birds has to find food and water in dwindling habitat decimated by malls and warehouses, dodge energized lines that power hungry industry, avoid the impassive glass of luxury homes built for pure self-satisfaction, find a safe place to nest when every tree holds a camera, avoid myriad hungry mouths and predatory tongues. Those writhing movements through the sky are the desperate ploys of a prey animal hoping to avoid death.

There are basic things: Here are your legal rights; here is how viciously you will need to fight to access them. Here’s what you need to know about being disabled at work, school, the doctor’s office. Here is where to file complaints about discrimination. Here is how to navigate the medical system. Here are practical tips on settling in with your first prosthesis. Here are tools that are useful around the kitchen if your hands are shaky, if you have contractures, if your joints are swollen with pain, if you are missing fingers. Here are apps that help you organize your life. Here is how you remember to take your medication. Here are the government programs you are theoretically eligible for, and here’s who to call about them. Here is how to pop your wheelchair over a curb. Here’s how to fly with a service dog. Here is—

There are other, deeper things. Teachings about disability history and culture, knowledge, the wisdom of elders and what Alice Wong terms oracles. The things that make disability not simply an event that happened to someone but part of a larger and more complex whole. This is the heart of the flock, its culture. A failure to communicate this information in the coming months and years would be a fatal error, dooming newly disabled people to repeat prior mistakes and depriving them of the legacies of disability life and culture. Already, they attempt to reinvent what has been well-trod, because they don’t know any better. Every bird, even the fallen ones, must be nourished.

This is a whole that is frightening for many newly disabled people. With all the messages telling people to “get well soon!” and “hope you feel better!” and “prayers for you and the fam!” it can be difficult to understand, emotionally and rationally, that “better” may not happen, at least not as intended; the jury is still out on long Covid, with some patients actually recovering after months. Many are here now. In the flock. The desperate desire to “go back” sends some whirling away from the flock, and next year (and beyond) must be the moment of facing forward, clear-eyed, seeing what is ahead, finding a way, even if it is a new way, not fighting the wind for a dream of something long gone.

Some disabled people present a very joy-forward vision of disabled life, counteracting the endless social messaging that disability is a fate worse than death, that disability is eternal misery, that disability is a punishment for disabled people and their loved ones. It’s not. Disability is a candlelit dinner with friends under the fresh air of a San Francisco night, is connecting with a friend to goof off with a new mobility device, is a powerful swimmer taking off from the block in a burst of energy, slicing through the water with brassy confidence.

But that doesn’t mean it’s not frightening. Especially for people who are new to the flock. It can be overwhelming, frustrating, infuriating, heartbreaking, upsetting. Someone who is going through a major life change can experience corresponding intense feelings. It is flip to say they should “come to terms with” and start living their lives, transitioning smoothly from before to hanging out the disability pride flag. The turning of the year is a traditional time for thinking about change, forward movement, what should be different, but it’s also a time of reflection: What did we see and feel and think? Did we allow ourselves time to truly feel those things, to let them inform the future, or are we suppressing them as we hurtle forward?

Those feelings don’t necessarily reflect their final form, but they are still feelings that need to be felt and also said aloud, heard, acknowledged, respected—the rage and terror of a bird with a missing wing who will never fly again, not in a way they know and understand.

It is at this moment that disabled people want to slide into the DMs, to tell people things. It’s going to be okay. People like you are okay. They want to help. I see you’re struggling with a lot of pain in your leg; I have a great prosthetist I can recommend. Your comments are pretty intense and I’m worried about you, are you seeing someone? We know things, they say.

The turning of the year is a traditional time for thinking about change, forward movement, what should be different, but it’s also a time of reflection.

The flow of information, of commentary, is sometimes positioned as one-way. I see you’re new here. Let me tell you how it’s going to be. What if being new is not a disqualifier? What if instead we asked not what we have to tell them, the new members of our flock, but what they have to tell us? What if we listened to their anger and pain, their sense of bewilderment at transition, and held our tongues? Offered, but did not force? We know that the past is past and we must look forward, but their lingering tailfeathers are still stuck there, wondering, hoping, wishing.

In the transition from one space to another, the only people who know what that expanse of road looks like are those who are on it, or have passed over it. They know things others cannot know, because they do not know they need to know them. Their unfamiliarity with systems disabled people have known forever is in itself a lesson about society and culture, about access to information, about access to the ability to share information. Disabled people know they are afraid and think they know why they are afraid—disablism, significant life changes—but perhaps asking them may reveal interesting things about the world, about ourselves. Perhaps understanding the language they use to describe themselves will provide valuable insights into other ways to view and interact with disability, a reminder that the flock is not a monolith, that each individual within it has intrinsic worth, value, and experience. Perhaps it will help us band together to fight off predators, harrying ravens and hawks into submission with a power we didn’t know we had.

To these new birds in the flock, it is easy to say you are ours now and we will show you how things are done, but perhaps other things to say are where did you come from and what did you learn along the way and here is my number—text anytime!

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