Columns An Unquiet Mind
Are We Ever Disabled ‘Enough’ When You Don’t See Our Disabilities?
It is not so much that these things are invisible as it is that people are trained to hide them, and society is conditioned to look away from them.
This is An Unquiet Mind, a monthly column by s.e. smith that explores disability identity and its interaction with the world at large.
I cannot remember the first time the pain came. Maybe I was sitting on the seawall with a friend or frantically shopping in the pre-Thanksgiving rush at Whole Foods or going to MOMA on free day at the museum. I was living in San Francisco then, and I had no insurance, and when whatever it was bloomed inside my leg, filling my entire world with excruciating fire, I couldn’t have gone to the doctor even if I’d wanted. I probably attributed it to something I did while dancing, or sitting funny, or walking too far with a friend visiting from the East Coast.
I don’t even remember what it felt like, the first time, because I didn’t know it was the first time.
Our bodies can have sneaky, hidden things inside of them.
Sometimes they are a few errant cells building up to a tumor, something gone strange and wild in the wiring of our minds, bundles of nerves that do not behave as they should. Parts of ourselves behave unexpectedly and erratically and sometimes they go on so long that we have to see someone about it, and they become, after much testing and discussion, illnesses. If we are lucky, those illnesses even get names, diagnoses, treatments.
There is a peculiar and complicated divide in some corners of the disability community where illnesses are not necessarily identified as disabilities, by the people who experience them or the disability community at large. This is all the more complicated when they are not immediately apparent to the casual observer; they are “invisible” illnesses (or disabilities), though I prefer “nonevident.”
Few things are truly invisible. Few people are truly invisible. In the waiting room at the psychiatrist’s, I see a person exhibiting the tell-tale signs of tardive dyskinesia, a rare and sometimes irreversible side effect of some psychiatric medications—smacking their lips and tossing their head, hands twitching, vocalizing aimlessly, embarrassment and frustration in their eyes. Their illness is not invisible to me. The tight, distant expression of a friend with chronic pain on a stiff walk to the car is not invisible to me. The instant assessment to determine where bathrooms are and whether they are occupied from a friend with Crohn’s, that, too, is visible, as is the quiet rocking of an autistic friend at dinner.
It is not so much that these things are invisible as it is that people are trained to hide them, and society is conditioned to look away from them.
I bore it for a long time. The pain came and went, and I could not figure out why. One winter, after several days of feeling like my leg was an overcooked sausage, shiny and tight and ready to burst at the seams, a friend finally dragged me to a doctor, who sent me to another doctor, and another, the bills adding up quickly but the appointments adding up to nothing much. There was no clear reason, nothing that showed up on tests, everyone agreed that it was something, that it responded to medication and physical therapy, and sometimes medical students were paraded in to marvel at the mystery. Every few years, someone would suggest some other round of testing and it would come up empty. My insurance got better, so at least it cost less out of pocket.
I have seen the inside of myself so many times and in so many ways.
It was around that time that the pain would spike so suddenly and severely that my leg would simply buckle under me, like I was one of those collapsing wooden toys. Push the bottom, watch the tension of the strings fall away, the parts of me tumble on the ground. I fell on the train, in the street, in the house, so abruptly that I didn’t even have time to brace myself. But to the outsider, there was nothing wrong with me, until there was.
I felt like I could not ask for accommodations, because I was not “disabled enough,” because there was nothing outwardly wrong with me. Because maybe it was all in my head.
Some call it the hierarchy of disability; the complex calculus of who is “more disabled” that some people seem to enjoy engaging in. Those with very evident disabilities are at the top of this hierarchy, while those who can pass as nondisabled are somewhere toward the bottom. Members of both groups can come to resent each other, for members of both can be remarkably unthoughtful about each other; the wheelchair user who does not understand why an ASL interpreter is necessary, the mentally ill person who misses the lip at the entry to the restaurant, the person with chronic pain frustrated by demands for alt text on the images they post so blind and low vision people understand what is happening.
I have seen the inside of myself so many times and in so many ways. This is, perhaps, one of the most glaring faults with “disability” as an identity category. It is too broad, too sweeping, to be useful. The experience of disability is very different for a powerchair user who uses a ventilator, a mentally ill person, an autistic person, a blind person. So different that these experiences cannot be mapped across each other in neat, tidy, obvious ways; to say that a mentally ill person knows how it feels to use a wheelchair full time is ludicrous, just as it’s silly to say that a blind person understands what it’s like to have Ehlers-Danlos, to suggest that having treatment-resistant depression means you understand schizophrenia. These experiences and lives can be complicated by race, gender, sexual orientation, other elements of ourselves; a Black deaf man existentially fears police in a layered and complicated way, just as a gay wheelchair user can find Grindr a singularly frustrating place. We cannot possibly speak for each other, and yet we often speak over each other.
This is made especially labyrinthine by the fact that many of us are dealing with multiple disabilities that interact with each other (some blind people have Ehlers-Danlos and know exactly what it feels like) and the world, in very different ways.
The experience is different, too, for those who move between spaces, who have the ability to conditionally pass as nondisabled at some times, while being utterly unable to do so at others, as well as those who fail to perform disability as expected. This manifests in all kinds of ways; the blind person who gets harassed for using their phone in public, or the person scolded for occupying the accessible seats on the train when they are concentrating extremely hard on not passing out.
As Annie Segarra says, “ambulatory wheelchair users exist,” and their existence is uniquely complicated, surrounded by pressures that are sometimes hard to articulate. People who do not have the choice of setting obvious markers of disability aside can feel frustrated with those who do not understand what it is to navigate the world full-time as an inescapably disabled person. Nonevident disabilities can look like a privilege; imagine being able to navigate the world in private!
The decision to use or not use a mobility device or another evident marker of disability becomes fraught with tension; at one moment it can feel like faking something, at another like being forced to use something you don’t need in that moment in order to avoid complicated conversations. “Why are you using a cane today,” someone asks. “You weren’t last week. Just temporary, I hope!”
That tension kept me from using a mobility device for years, and then I started using a cane for an unrelated injury and discovered something: It was freeing. When the tell-tale tingle and hot rush began to creep along my nerves, I didn’t have to abruptly sit, to excuse myself. When the place lurched under me as I was moving down the aisle, my leg throbbing from the pressure changes, I didn’t have to end up in a sprawl, the flight attendant rushing to my aid. I had a quiet ally to keep me stable, even if, at times, it was an ally that brought me unwanted attention.
I felt like I could not ask for accommodations, because I was not “disabled enough,” because there was nothing outwardly wrong with me. Because maybe it was all in my head. But it is an ally I can drop, appearing, once more, to be nondisabled to the casual eye, and that is something I am intensely aware of.
A funny thing happens as I shift between these spaces, evident and nonevident: Passing does indeed make me strangely invisible, unremarkable, just another person drifting through this troubled world of ours. Picking up a cane, though, makes me invisible in another way: People are so eager to avoid acknowledging the very existence of disability that they will quite literally fall all over themselves to pretend we don’t exist. I’ve watched ambulatory people walk directly into wheelchairs, had people in line at events bump into me, been made invisible in a different way, a fascinating and infuriating discovery, to go from one form of invisible to another.
People are frightened of disability and all it represents, invisibilizing us in a fascinatingly dualistic way: They strive to avoid learning about or recognizing the signs of less evident disabilities, just as their attempts to act casual around people with very visual markers of disability often wind up creating the opposite effect, as they turn us into blank spaces in the landscape.
A few months ago I was at an event held on the second floor and I stopped at the front desk to ask where the elevator was, because it wasn’t obvious. The receptionists were deep in conversation and didn’t notice me until I was right there in front of the candy dish. I got a sharp look—a seemingly young chubby person, lazily asking for the elevator instead of taking a flight of stairs one story up—but they grudgingly pointed the way. It was only as I walked away, tick-tick-ticking my way across the slippery marble floor, that their faces flushed with embarrassment for judging the cripple.
What might the world be like, I wonder, if we could stop judging everyone for asking for accommodations, if we could silently build a place that is welcoming and inclusive for all bodies, if we could stop treating accommodation and respect like finite resources that will run out if we don’t hoard them? “Be kind,” says an oft-misattributed quote that seems to have arisen from the zeitgeist, “for everyone around you is fighting a hard battle.”
Seen and unseen, I do not want people to pity me or feel awkward when they realize that I am not what they expected. I just want them to tell me where the elevators are, and keep their thoughts about why I am using them to themselves.
