The Broken Country: On Disability and Desire

The fall I was nineteen, I came into my college dining hall in California just in time to overhear a boy telling a table of our 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, I 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.

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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.

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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,

Photograph by INA JANG

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 shot the whole thing on a video camera mounted on a tripod, and gave us the raw footage to take home...