Columns An Unquiet Mind
Disability Sucks Sometimes. Why is it Taboo to Say So?
Disability ruins everything, these stories tell us: disability itself is tragedy. These people’s lives are over, apparently, even though they are palpably still here.
This is An Unquiet Mind, a National Magazine Award-winning monthly column by s.e. smith that explores disability identity and its interaction with the world at large.
We were going comet hunting somewhere where the Milky Way and NEOWISE would both stand out across the dark sky. I suggested the dunes. I spent many happy nights there as a youth, surrounded by the salt spray that fogged my glasses and dodging the sharp blades of the grasses that rooted in the ever-shifting sands. Sometimes we went to set off fireworks at midnight, in great bursts of glory, alternately thrilling and terrifying. Or we’d drink cheap liquor purchased by graduates of earlier classes in order to work up the courage to run into the ocean, gasping with the shock of the cold while the stars turned overhead. The dunes were a strange kind of second or third or maybe fourth home, and I wanted to forge new memories there, a palimpsest of magic.
I even wore my constellation cloak to find NEOWISE—an object my past self would have lusted after, with glow-in-the-dark astrology shoes. (I thought they were astronomy shoes, don’t judge me.) But sometimes, what you find when you hunt for stars is your past—and irreconcilable differences.
Past me would have scampered up the dune between the parking lot and the spot where we wanted to be with no hesitation, sand curling and unfurling under their bare feet, deftly avoiding the sharp grasses that stab the unwary walker. But past me is gone now. Present me, introducing a new set of people to the wonder of the dunes, wanting them to love them as much as I do, cannot walk on slippering, slidy sand—I can barely slog through loose sand when it is level, let alone down a slope. I can’t always take the creative short cuts my friends do.
There is a particular media sentiment in the process stories following wounded and, to some, newly disabled survivors of tragedy that I loathe: So-and-so will never be able to X again. Never be able to dance again. Never be able to paint again. Never be able to code again. Though someone may still be in recovery and uncertain about the future capacities of their bodymind, the media is quick to project the arc of their healing because everyone wants easily broken-down stories: “This is yet another thing tragedy has taken from the survivor” sounds cleaner than an uncertain future.
Those who survive horror often join the disability community. It’s not just legs lost in the Boston Bombing, bullets mass shooting survivors still carry in their bodies. It’s the trauma of being abandoned to die in New Orleans after Katrina, of fleeing a wildfire with desperate urgency. It is a car wreck, lived over and over again. It is feeling his hand on your mouth, clammy, reeking of something meaty and vile, while he paws at the buttons of your shirt. It is living under the shadow of a virus made worse by incompetency and malice.
Past me would have scampered up the dune between the parking lot and the spot where we wanted to be with no hesitation. But past me is gone now. Disability ruins everything, these stories tell us: disability itself is tragedy. These people’s lives are over, apparently, even though they are palpably still here.
Newly acquired disabilities don’t come with a user’s manual. And newly disabled people are sometimes reluctant to identify as such because their only conception of disability is something bad. Mass shooting survivors have an informal network that meets survivors to talk to them about what they might experience and how, but that kind of disability orientation is rare. For the most part, unless they have disabled friends, people emerge into the harsh sun of the hospital parking lot and don’t know what to do next.
*
I hear the others talking and laughing, and feel resentment burning through my skin. Not resentment at them, but resentment at the accumulated nerve damage that has made my leg stiff and clumsy, prone to buckling and sparking with pain. I kick the sand in a flash of annoyance and fight back frustrated tears as I go the long way, skirting the dune for a gentler incline that I could struggle up. I am angry that I can’t go where my friends went, like I’m angry that I can’t ride a bike, like I’m angry that I can’t do so many basic things. The acoustics fill the air with the sound of the waves pounding, and I can smell the salt, and it bathes me, for a moment, in calm, a reminder of why we came.
For newly disabled survivors of trauma, being thrust into this deep end can be terrifying, and unfair. Disabled people, whether congenital or acquired, are routinely kept from each other by the same social structures they are fighting: Inaccessibility, disablist attitudes, lack of independence and mobility. Parents sequester their children, building narrow, strictured lives for them—they aren’t introduced to other disabled kids unless they happen to go to school with them, and parents shape the way their children view disability. They think it is love, but instead it is suffocation. Sometimes, it can mean ending up in an institution .
Adults don’t know where to look for community, since disability is treated as a medical issue, not a culture and community. Doctors may not think to connect patients with people experiencing similar conditions. This is one reason the online disability community is so incredibly valuable, because it is much harder to keep people from meeting each other online, finding their cripspace . If there’s anything society fears more than cripples, it seems, it is groups of cripples who might engage in seditious behavior—like believing that they are whole people who deserve full inclusion in society.
For some, there is a period of rage and grief and other emotions hard to articulate when they’re forcibly inducted into a fraternity they didn’t even rush for. When the way people lead their lives demonstrably and painfully changes, when they have to give up or adapt things that they loved, it has a tendency to make them pretty fucking mad, honestly. They’re angry about something that was taken from them and that anger bubbles up every time they’re reminded—when they literally trip over the symbols of everything that has changed, when they don’t know where to go from here. But they need to be angry. They don’t need to be surrounded by nondisabled people talking about how they’re an inspiration and they’ll overcome, nor enthusiastically greeted by disabled people saying “welcome to the disability community!” They’re just trying to get their bearings, not make waves.
But this has become, in less nuanced circles, disabled and nondisabled alike, a forbidden thing to say. To say that you are angry about your disability is not acceptable. We aren’t allowed a public or private sadness, a rage, a sense of bitterness and loss. We must perform happy disability pride, not acknowledge that pride is never that simple and that not all people want to be proud. Some want to be furious about the things stolen from them, some want those things back . For some, our disabilities can become things that haunt and frustrate us , leaves us reaching for the cure, wishing just for one day that our bodies would stop conspiring against us.
Myself, I do not like being told what not to do. My body sometimes does just that. Don’t climb that high dune. Don’t go up those stairs. Don’t walk too far. Don’t do this. Don’t do that.
To say that you are angry about your disability is not acceptable. We aren’t allowed a public or private sadness, a rage, a sense of bitterness and loss. It is okay to scream. It is okay to shout. It is okay to cry. It is okay to be angry. It is okay to be furious about how unfair all of this is, because it is unfair. “Life fucking sucks sometimes,” as a grief counselor once told me. An acquired disability can be a huge shift—in a sense, a form of death, the loss of a past self. Some people mourn their shift in ability when they endure trauma. They are frustrated by rebellious bodies, by huge lifestyle changes, by the circumstances of their injuries—for some, the loss of independence or important parts of their identities. They don’t want to hear about wheelchair dance and adaptive sports. They want to be mad that they’ll never rise up into the heavens on a pair of pointe shoes again. None of these things are wrong, and perhaps if we created more space for them, disability would not be so overwhelming sometimes.
No one expects to run a marathon and wake up in the hospital with no legs.
It is unreasonable to expect everyone to feel the same way about their disabilities when bodies and disabilities themselves are so varied. At a moment when coronavirus is leaving tens of thousands of people with long-term complications that may substantially impact their lives, it is crass to tell them how to react to their circumstances. It is verging on cruelty to punish those in mourning rather than listening to them and lifting them up. Do not tear the wailing widow from the coffin, but instead witness her.
And when the widow is you, witness yourself.
*
The sand hisses under my feet and I catch up with my friends, eventually. The sky is studded with stars and it is beautiful, and it is worth it to be here. We share the chocolate I picked up on my way out the door to meet them—but all good things must come to an end. I fold the wrapper and tuck it back in my pocket while people pack up their gear. But when we make to leave, without comment or gesture, my friends quietly take the long way, and we all walk together as the comet sets behind us.
I think about all of the things we give up, and the things we give up for each other, and what it means to acknowledge that, rather than trying to hide it. It is okay to mourn the people and things and places we have lost; it is okay to shape a world where these losses sting less. It is okay, too, to share a chocolate bar under the stars, made universally insignificant by the vastness of space as it unfurls overhead.
__________________________________________________________________________
[1] There is a complicated conversation around disability and identity. Two people with the same impairment do not necessarily both view themselves as disabled. People who support a more medicalized view of disability may feel differently than those who follow the social model—that society chooses to disable us on the basis of our impairments. Since there’s often confusion about the social model, I wish to note that the social model does not erase the reality of impairments, but rather places the responsibility for equity on society, not the individual. Recognizing that society makes impairments more difficult does not erase those impairments; for example, chronic pain remains chronic pain and can be experienced as personally disabling even in a world where people with chronic pain have access to quality health care and supportive communities. The social attitudes around chronic pain, however, make it harder to receive necessary accommodations, and block research into more effective treatment options while policing people who need and use the one broadly-available option: Opioids.
