The Guardian Australia
'I am a woman who wants': on disability and desire
The autumn I was 19, I entered my college dining hall in California just in time to overhear a boy telling a table of mutual acquaintances that he thought I was very nice, but he felt terribly sorry for me because I was going to die a virgin. This was already impossible, but in that moment all that mattered was the blunt force of the boy’s certainty. He hadn’t said he could never … or “She might be pretty, but” … or “Can she even have sex?” or even “I’d never fuck a cripple” – all sentences I’d heard or overheard by then. What he had done was, firmly, with some weird, wrong breed of kindness in his voice, drawn a border between my body and the country of desire.
It didn’t matter that, by then, I’d already done my share of heated fumbling in narrow dorm-room beds; that more than one person had already looked at me and said: “I’m in love with you,” and I had said it back. It didn’t matter that I’d boldly kissed a boy on his back porch in sixth grade, surprising him so much that the BB gun he was holding went off, sending a squadron of brown squirrels skittering up into the trees. Most of me was certain that the boy in the dining hall was right in all the ways that really mattered. He knew I’d never be the kind of woman anyone could really want, and I knew that even my body’s own wanting was suspect and tainted by flaw. My body was a country of error and pain. It was a doctor’s best attempt, a thing to manage and make up for. It was a place to leave if I was hunting goodness, happiness or release.
* * *
I have the strongest startle reflex in the world. Call my name in the quiet, make a loud noise, introduce something sudden into my field of vision, and I’ll jump like there’s been a clap of thunder every time. It’s worst, though, if you touch me when I’m not expecting it. I start the way a wild animal does. For years I thought only the bad wiring in my brain was to blame, the same warped signals that throw off my balance and make my muscles tighten, keeping me permanently on tenterhooks. Then I met Susannah, whose first memories are also of a gas mask and a surgeon’s hands, of being picked up, held down, put under. She, too, jumps at the smallest surprise, the slightest unanticipated touch. Now I think that feral reflex also arises from something in that early trauma: all those years of being touched without permission, having your body talked about over your head, being forced under sedation, made to leave your body and come back to a version that hurts more but is supposedly better – the blank stretch of time when something happened you can’t name. I think it matters that the first touch I remember is someone readying to cut me open, that when I woke up I was crying, and there was a sutured wound.
* * *
For the better part of my childhood, I was part of a study on gait development in children with cerebral palsy. At least once a year – and sometimes more frequently if I’d recently had surgery – I spent an afternoon in a research lab, walking up and down a narrow strip of carpet, with sensors and wires attached to my body so doctors could chart the way I moved. The digital sensors composed a computer model of my staggering shape, each one a little point of light, and when I peeled them off they left behind burning red squares like perfect territories. But the doctors also filmed the whole thing on a video camera mounted on a tripod, and gave us the raw footage to take home. The early films are cute; I’m curly haired and chatty. The bathing suit I wear so that my legs and arms are bare is always either a little too small or a little too big, a hand-me-down from my older sister. I trundle happily down the carpet. As I get older, though, the tapes get more complicated. By the time I get to footage where I look anything like myself, I can’t bear to watch. I’m a teenage girl in bike shorts or a bathing suit, being watched by a collection of men, walking what’s essentially a runway like some kind of wounded animal.
Even today, I can’t quite tell: do I hope that when they looked at me back then, mostly undressed, they saw only a crop of defects that needed fixing, a collection of their best repairs? Or do I hope that one of them – maybe the redhead, not yet 30 – felt some small press of desire, knew I was a girl on the edge of womanhood and not a half-lame horse or subject #53? I know I hated being watched. I also know it never occurred to me that anyone watching would see something worth wanting.
They took those videos throughout most of my adolescence. Do you know I still can’t stand to watch myself walk? I put my eyes on the floor when I pass department-store mirrors or reflective glass. I catch a glimpse of myself and my stomach turns. When I asked the first man I loved about the way I moved, he said: “It’s nothing. It doesn’t matter.” He meant it as a comfort, but I thought: “You’re wrong. It makes me what I am.”
* * *
Chronic pain makes you good at abandoning yourself. It teaches you to ignore your body until it insists on being noticed, until your joints ache too badly to stand, until something buckles, until you fall and then you’re bleeding hard enough to ruin your clothes. There’s a certain low thrum of hurt I don’t notice; it’s just the frequency at the bottom of everything. A good day is one where I hardly think about my body, where I adjust for its flaws by instinct, where there isn’t any sudden spike in that low pulse of pain.
On a good day, my body doesn’t embarrass me. It does what I ask it, lets me walk short distances and do my job. I don’t notice people staring, don’t trip on my way in to teach a class, sending 35 student papers flying everywhere. I don’t have to pause at a threshold and ask a stranger to help me lift my wheelchair up and through a door. No one I don’t really know needs to put their hands on me. No one in the grocery store asks: “What happened, sweetie? You’re so pretty to be in a wheelchair!” On a good day, my body pulls hard at the hem of my dress, and I hiss back: “You don’t exist,” and it goes somewhere else, or I do.
In bed, a man pauses, puts a wide, gentle hand on my face and asks: “Honey, where are you? Come back here.” I want to, and also I don’t.
* * *
Just as I hit adolescence, my body abruptly began to break down. I grew, and so did my physical instability. My tendons tightened, and my pain increased. The doctors scheduled another set of medical procedures: a surgery, a summer in a set of full-leg plaster casts and then a pair of heavy, bulky metal braces. Just as I began to learn I could feel sexual desire, I was splintered and in pain again, and the fact of it demanded most of my attention. My earliest experiences with lust feel shrunken by the trauma, vague and distanced, as if I watched through a scratched viewfinder while they happened to someone else. I can’t identify them for you except as strange, dark shapes at an unreachable horizon line.
During those years I had to wear parachute pants – specially made by a tailor who regularly asked my mother to remind her what was wrong with me – and giant sneakers to accommodate the braces. Besides all that, I had the usual adolescent problems. I hadn’t learned that you really just shouldn’t brush curly hair, or that if you have hips and spend most of your time sitting or bent over, low-rise jeans are a terrible idea. Not only was I far from resembling the kind of girl I could imagine anyone finding desirable, I was so occupied with pain and with being a patient, perpetually hamstrung between taken-apart and put-back-together, that it would take me years to really look at myself and realise I was also a person. A woman. That there was a whole other way I could want to be touched.
I belonged to an adaptive skiing association and spent most of the time I wasn’t in the hospital or physical therapy learning to hurl myself down snowcovered mountains with men who’d been paralysed in car wrecks. But I didn’t know a single adult woman with a disability really comparable to mine. Nowhere on television, or in any magazine, did I see any portrayals of disabled women as sexual and desirable (let alone as partners or as parents), and most of the solace that the early-2000s internet had to offer was in the form of assurances that I might one day be the object of some very particular fetish. It matters that when any adult spoke to me about my body, they did so in purely utilitarian terms, said that I should want the best range of motion, the least pain, the highest level of mobility, so that I could one day buy groceries, live independently, hold a job. Of course, nobody warned: you’ll want your hamstrings to be loose enough that it doesn’t hurt when your muscles tense before you have an orgasm. They also didn’t say: we want to do all this to you so that one day your body can be a thing that brings you pleasure, a thing that you don’t hate.
The truth is, my first real flushes of lust happened when my own body was a dangerous thing, one I couldn’t trust not to fall to pieces or to lunge at the rest of me with its teeth bared, out for blood. So much of my somatic experience was agonising and frightening. I had no idea what my body would look, move or feel like five years down the line. Desire wasn’t entirely crowded out by pain, but I distrusted it the same way I did everything that felt born in my body, as if it were an instant away from morphing into suffering, waiting only until I attended to it to become a thing that hurt me. I playacted at desire often – mimicking the adolescents around me when they traded gossip about crushes, had first kisses, held hands furtively underneath their desks in social-studies class – but I couldn’t afford to get to know its real contours in my life, to attend to my own sensations, or to believe in a future with real space for that kind of pleasure or intimacy, that kind of love. To survive, I had to stay unfamiliar to myself: neutralised, at arm’s length. Sometimes, I think, all these years later, I’m still hunting the part of myself I exiled.
When I was newly 17, one of my closest friends put her head in my lap, said: “You’re so gorgeous,” and then leaned up and kissed me. I would spend the better part of the next year alternately pushing her away and pulling her close, trying to figure out whether I wanted her, too, or only the plain, unapologetic fact of her desire for me. Her gentleness, her confidence in her own body and its hunger, the fact that when she watched me move, I felt like a painting come to life and not a patient or a busted wind-up toy. A decade later, I still feel guilty for all the secretive back-and-forth I put her through because I was unwilling to be open about our romantic relationship, and the answer to the question of my own desire still feels fraught and muddy.
A handful of years after that, I was in a coffee shop with a man I halfthought I’d marry, in a youthful, abstract way, and someone in line assumed he was my brother, though we couldn’t have looked less alike. When we corrected her, she looked over my head at him and said, gently and admiringly: “She’s so lucky to have found you.” He bit his tongue when I squeezed his hand. I didn’t want to think about it any more. We turned away.
We started dating after he attended a reading I gave. When it was over, he came up and kissed my cheek, said: “That was so incredible that I forgot to breathe while you were talking.” Then he turned on his heel and walked away. I rolled my eyes, but couldn’t get him out of my head. The way I moved was nothing. He was proof it didn’t matter.
At a taffy shop on the boardwalk in San Francisco, the weekend we first say “I love you”, a middle-aged man is pushing a woman, clearly his wife, in a wheelchair. They are laughing and his head is bent so that their faces are close together as he walks, intimate and tender. We bump into one another in the aisle and pause – two couples exchanging smiles – while we make room for her wheelchair to get past mine. They walk on, and then we kiss, fierce and happy there. We’re young, and don’t know anything. We both think “maybe”.
Later, we’re in Florida at the beach, and I’ve been stiff and hurting for weeks from a summer of travel. In the bathroom, while we’re changing into bathing suits, he looks me up and down. I’m prepared for him to try something – to kiss me – and I’m prepared to put him
off, we don’t have time; we have to meet my family by the water. Instead, he asks me tenderly: “Do you want help clipping your toenails, baby? They’re getting kind of long.” That night, in bed, I roll away when he reaches for me. My body is no country for desire.
A couple of years later still, another man – charming, boy-next-door-beautiful and quarterback confident – has started spending evenings in my bed, or with me pinned to his couch. He tells me I’m sexy, asks to read what I’m writing, then asks quiet questions about poetry and movies that I love. But he won’t be seen dating me in public. When I tell him I’m more than happy to be fooling around, but that I won’t sleep with somebody I hardly know, he puts all his weight on top of me, says: “Oh, if I wanted to have sex with you, you’d know.” Then flips me over. Pushes my head down hard enough that it hurts. I think: he’s embarrassed to be seen with me. He gets off on how fragile I am. I’m too old to put up with this. But I let him. I let it go on for weeks and weeks like that before I stop returning his latenight texts.
I want him to want me, and though I can’t quite admit it to myself, I am also a little afraid. Always, I’m aware that I’m particularly vulnerable: I couldn’t run if you came at me. I’d fall to the ground if you touched me even slightly roughly. I will always start at an unexpected hand.
But because some of you are wondering (I see you leering at me, stranger at the bank. I see you, terrible internet date); because we live in a world that often assumes disabled people are sexless or infantile; because I wish I had heard anyone who looked or moved like me say it when I was 14, I want to be very clear: I can, in fact, have sex. I am a woman who wants in ways that are both abstract and concrete. I have turned down advances from people I wasn’t attracted to, and said yes to a few advances I’m sorry about now, and more that have been lovely, surprising and good. I’ve had a date who didn’t realise I was in a wheelchair turn and walk out of a restaurant when he saw me, and I’ve watched the light behind men’s eyes turn from desire to curiosity to something else when they realise something’s wrong with me. I’ve been hit on while on barstools by people who disappear once they’ve watched me get up and shuffle slowly to the bathroom. I’ve used that trick to my advantage. I’ve spent a summer weekend taking baths and eating overripe peaches in a seedy motel with someone I loved, and another getting lusty-whiskey-drunk with someone I didn’t, but whom I was still perfectly happy to have unbutton my shirt. The explicit details I’ll keep to myself, except to say that my familiarity with how to jump-rope the line between pleasure and pain has done me some favours. If you’re listening, younger self, some of what you’re learning will, I swear, eventually have uses no one’s naming for you, uses that no one orbiting around you can locate, name or even imagine.
In another kind of story, I would leave it there. Or I would say that I’ve arrived at a reconciled point, that no part of me ever still believes that the boy in the dining hall, who was certain I would die a virgin, hit on some real truth about the ways my body is defective and repellent; that, now, I can watch myself move without feeling some small wave of shame; that I’ve completely stopped abandoning my body out of instinct, or habit, or what feels like necessity, in moments when it should bring me pleasure and intimacy and joy. I’d have fully worked out how to be with a partner who I know really sees my body, its contours, its scars and its pain, who I can let give me the kinds of help I need and still trust to see me as sexual and desirable. But that isn’t where I find myself. I don’t know exactly where the reconciled point is, or even what it looks like. Instead, things just get more complicated. I really want children, and in the past few years that prospect has collided with questions of intimacy and desire. I worry about finding a partner truly willing to parent with me in the ways I know my disability will necessitate, and to sign up for the medical uncertainties I know are around the bend in my own life. I worry about the toll pregnancy might take on my body, and about being physically capable of being a good parent once my children are born. I worry that my clock is ticking faster than most people’s, my body wearing down and wearing out. And, in the hardest moments, that whatever small kind of beauty and desirability I might, in fact, possess is wearing away with it. I’m still surprised by my own limits, still frustrated and exhausted by pain. Sometimes I still feel suspicious of all my body’s sensations, the good ones tangled too tightly with the bad. But not all moments are the hardest ones, and maybe the point is simply this: that I am still alive, still in the business of heading somewhere, still a woman who can stumble, hurt and want, and – yes – be wanted. That there is no perfect reconciliation, only the way I hold it all suspended: wonderful, and hugely difficult and true.
• Places I’ve Taken My Body by Molly McCully Brown will be published by Faber on 4 March. To order a copy, go to the Guardian Bookshop.
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