The earliest lexicon I remember having available to use when defining myself is a medical dictionary of defect and attempted repair: ruptured amniotic sac, neurological disorder, increased spasticity, impaired fine-motor control, Dorsal Risotomy, cartilage disintegration, orthopedic surgeon, orthotics, plaster molding, gate monitoring and maintenance, physical therapy, magnetic resonance imaging, double upright KFOs. Find all cross-listed under deformity; deficiency; disability.
By kindergarten, I could tell you, in the Donald Duck voice I spoke with because I couldn’t really clear my throat, that I had, “Cerebral Palsy, which is a little like a stroke that happens when you’re born.” There is probably not a single other sentence I have uttered more frequently in all my years of being alive. It appears in every facet of my life, addressed at one time or another to nearly every stranger and acquaintance and friend. To the potential employer: I have Cerebral Palsy, which is a little like a stroke that happens when you’re born. To the handsome, confused guy across the table in the coffee shop: I have Cerebral Palsy, which is a little like… To the college girl in the grocery store aisle who looks shiftily at the adapted Segway that I sometimes use to get around, the man behind me in line at the ATM who asks why I’m in a wheelchair, the mother and her little boy, the older woman coming out of church who sees my cane and my weird walk and says, “you’re too beautiful to be disabled, what happened to you!?”: I have Cerebral Palsy…
One day I report an interaction like this, and a friend’s surprise at a stranger’s forwardness, to my father on the phone. I say: I had to tell her this happens to me all the time. He corrects me, out of what impulse I’m not completely sure: “well, not all the time, but sometimes…” I don’t remember if I force the issue. No. All the time. At least once almost every time I leave my house. This is not an exaggeration.
Weirdly, there is a strange kind of security about having something so immutable and constant at the center of yourself. Once, I was interviewed briefly for a local news segment about new adaptive technology. The caption underneath me while I spoke read: Molly Brown: physically disabled. It’s hard to argue with this. Whatever ontological unease I feel, however ethereal my thoughts become, the truth of my body is literal and absolute, like an anchor pulling me back to the world.
And that other essential, persistent refrain is as an important as ever, however often I repeat it. I am lucky: lucky to be alive, to be as mobile and unscarred as I am, to be as independent as I am capable of being. I am lucky to have been born to smart, devoted parents, to have received an extraordinary education, to be without serious cognitive impairment and able to articulate my life and my body. I am lucky that it is possible for me to stand up, both literally and figuratively, for myself and others like me when it’s called for. I am lucky for a million other reasons that are impossible to list here. I am incredibly privileged.
But can I admit something unflattering and exhausted and ungenerous?
I’m fucking tired of talking about disability. I’m tired of talking about its place in culture and politics. I’m tired of talking about my body and other people’s bodies, and of feeling like leaving my house in the morning is a political act. I’m tired of, whatever I write and whatever I’m thinking, feeling disability bang around at the back of my brain and insist on a presence in everything. Get out. Leave me alone. Get out. Get out.
I spent nearly the entire day yesterday sitting in front of this computer trying not to write this essay—which I feel like I’ve written a thousand versions of before—negotiating out loud with the thick, warm air: I will write about anything else, anything at all. There’s a whole world out there, and I spent my week imagining women slowly losing their minds trapped in a hospital. Couldn’t there be something else in my writing mind? Last week, when a woman in the Thai restaurant where I was picking up takeout looked at my Segway and, not knowing any better, asked me if I wouldn’t rather just walk, I almost said: You bitch! Just so I wouldn’t have to say: Actually, I have Cerebral Palsy…
I’m tired of feeling left out of every conversation about femininity, and every conversation about feminism, like I can’t ever find another voice in the chorus like mine, an experience that matches my own. Trying to explain this to a good friend who’s recently started blogging for a feminist website, I say: nobody anywhere in the media looked anything like me when I was growing up. Nobody on television, or on any magazine cover, or in any book. Even in counterculture I couldn’t find a model. Nobody on the playground moved like me, and, as I aged out of childhood, nothing in my world warned me or prepared me or made any room for me. Nothing offered any advice: here’s how your disability can co-exist, with your gender, your sexuality, your politics, your ambition. Here’s how to talk about it to bosses and lovers, here’s how not to let it get so big it drowns out everything else about you. I had to make it all up as I went along.
The ugliest, most selfish part of me is tired of feeling responsible for that silence, that hole, that lack I feel—like somehow I have to end it, change it, fill it up.
The other night, I put on a nice dress and I went to a bar I don’t usually frequent, but that I knew was accessible. I parked my Segway against the back wall and chose a table close enough that I could see it, but far enough away that it wasn’t obviously mine. I sat in the semi-dark and drank a bourbon, and enjoyed the thought that, looking at me, nobody would know, that sitting at the table right now I could be any pretty young woman with a book in a bar. For all they knew, I could go dance. I could get up and walk right out of there, painless and fluid and unremarkable. I wouldn’t need to field a single comment or question, or get a single sorry look.
This lasted a few minutes, and then I felt guilty as hell for trying to crawl out of my own skin.
Later, I put off sending the email in which I have to write and tell the woman interviewing me for a job on Tuesday that I’m in a wheelchair. I worry about the mother who emailed me about tutoring her daughter in SAT prep, and then just stopped writing after I revealed I used a wheelchair. Who knows what happened, but…
I’ve been seeing someone very casually for a little while, and while he’s made it clear he’s interested, it’s also clear that he’s more than a little uncomfortable with his relationship to my body. One night, before he comes over, I catch myself wondering whether I ought to put cover-up on the bruises that dot my legs and feet from the fall I took the previous night, and trying to imagine how I can stand up as little as possible once he arrives: if I’ve already poured our drinks, then… It’s more than wanting to be pretty, then putting on mascara or a dress that makes me look skinnier. In all of this, I’m trying to play-act not just a different body, but a different life in which this history of damage isn’t mine and, on a night when he’s more uncomfortable than usual, I don’t need to worry about falling down the concrete stairs ahead of him because my pride won’t let me take his arm.
And here, again, my privilege rises to the surface: my daily life is manageable enough that I have time to meditate on the cultural position of disability. When I need a night off from my body I can go to a bar and sidle away from myself, pretend to be a different kind of woman with a different life. I can blend in, pass. And, however complicated it has been—will be—there have been people who’ve loved me, found me beautiful, become comfortable beside me, in my life. Really remembered this is enough to begin to soothe the tired, freaked out, fucked up part of myself that’s been screaming for silence.
The truth is, mostly, I don’t want a different life, really, or even a different body. I’ve brokered peace with my wild hair, my spade-like nails, my perpetually pale skin, even my weird, shipwrecked legs. My neck is my mother’s neck, my face is my father’s face. And this body gave me rapt attention. It gave me empathy and maturity. It gave me discipline and poetry, and enough hurt and strangeness to really need it. And I wouldn’t trade away anything that might take with it the way I fill up when I read Dickinson. After great pain, a formal feeling comes…
The truth is, what I want is the same thing so many progressive idealists hope for. I want a different, better world than the one I came of age in. Each child with a disability will always know too early the dictionary of defects and treatments essential to her life. But I want for them all to have, too, another language with which to talk about their bodies and their lives: one of pride and complexity, intimacy and particularity, survival and triumph. I want them all to know that there are other bodies that look and move like theirs, bodies that aren’t lying in hospital beds or aging bitterly in the corners of rooms, and I want them to have easy access to voices that will comfort and console and instruct them and welcome their presence in the chorus. I don’t want them to go it alone. I want them to believe in the possibility of love, and adventure, and beauty, and a whole complete life, however trite that all sounds.
There are people out there working to make this possible; there are small communities building and buzzing. To help make the world I want more possible I have to write, I have to talk. Language is my medium. It is the thing that has borne me up and out of every valley, the thing that has tied me to other people and made my life large. Often, it’s the only thing I really believe in.
So I stop fighting with the air and write this essay. I tell the woman who’s interviewing me next week what to expect. I gather myself and put my hands in my hair, lean close to that guy I’m seeing and say: listen, you can tell me if you’re feeling uncomfortable and we’ll talk about it, you can ask questions if you have them, you can take your time getting to know me, but you can’t push me away like that because you’re freaking out about the wheelchair. I’m done with the part of my life where I feel ashamed of myself and of my body. I’m not about to go back there, okay? That’s the deal. I let him say he’s sorry, put his arm around me. God, even I don’t get it right all the time.
And, when I’m ready, I stand up from the table in that bar. I stumble a little and stomp over to the wall. Outside, some guy at one of the tables stops me. Hey, what’s the deal with the Segway? In a lot of ways, I’m better at this than anything else, meant for this sentence and the conversation it starts: Hi, I use it instead of a wheelchair; I have Cerebral Palsy, which is…
Rumpus original art by Marc Pearson.