Exile and Pride: An Excerpt
from “The Mountain”
I: A Metaphor
The mountain as metaphor looms large in the lives of marginalized people, people whose bones get crushed in the grind of capitalism, patriarchy, white supremacy. How many of us have struggled up the mountain, measured ourselves against it, failed up there, lived its shadow? We’ve hit our heads on glass ceilings, tried to climb the class ladder, lost fights against assimilation, scrambled toward the phantom called normality.
We hear from the summit that the world is grand from up there, that we live down here at the bottom because we are lazy, stupid, weak, and ugly. We decide to climb that mountain, or make a pact that our children will climb it. The climbing turns out to be unimaginably difficult. We are afraid; every time we look ahead we can find nothing remotely familiar or comfortable. We lose the trail. Our wheelchairs get stuck We speak the wrong languages with the wrong accents, wear the wrong clothes, carry our bodies the wrong ways, ask the wrong questions, love the wrong people. And it’s goddamn lonely up there on the mountain. We decide to stop climbing and build a new house right where we are. Or we decide to climb back down to the people we love, where the food, the clothes, the dirt, the sidewalk, the steaming asphalt under our feet, our crutches, all feel right. Or we find the path again, decide to continue climbing only to have the very people who told us how wonderful life is at the summit booby-trap the trail. They burn the bridge over the impassable canyon. They redraw our topo maps so that we end up walking in circles. They send their goons—those working-class and poor people they employ as their official brutes—to push us over the edge. Maybe we get to the summit but probably not. And the price we pay is huge.
Up there on the mountain, we confront the external forces, the power brokers who benefit so much from the status quo and their privileged position at the very summit. But just as vividly, we come face-to-face with our own bodies, all that we cherish and despise, all that lies imbedded there. This I know because I have caught myself lurching up the mountain.
II: A Supercrip Story
I am a gimp. a crip, disabled with cerebral palsy. The story of me lurching up the mountain begins not on the mountain, but with one of the dominant images of disabled people, the supercrip. A boy without hands bats .486 on his Little League team. A blind man hikes the Appalachian Trail from end to end. An adolescent girl with Down syndrome learns to drive and has a boyfriend. A guy with one leg runs across Canada. The nondisabled world is saturated with these stories: stories about gimps who engage in activities as grand as walking 2,500 miles or as mundane as learning to drive. They focus on disabled people “overcoming” our disabilities. They reinforce the superiority of the nondisabled body and mind. They turn individual disabled people, who are simply leading their lives, into symbols of inspiration.
Supercrip stories never focus on the conditions that make it so difficult for people with Downs to have romantic partners, for blind people to have adventures. for disabled kids to play sports. I don’t mean medical conditions. I mean material, social, legal conditions. I mean lack of access, lack of employment, lack of education, lack of personal attendant services. I mean stereotypes and attitudes. I mean oppression. The dominant story about disability should be about ableism, not the inspirational supercrip crap, the believe-it-or-not disability story.
I’ve been a supercrip in the mind’s eye of nondisabled people more than once. Running cross-country and track in high school, I came in dead last in more races than I care to count. My tense, wiry body, right foot wandering out to the side as I grew tired, pushed against the miles, the stopwatch, the final back stretch, the last muddy hill. Sometimes I was lapped by the front runners in races as short as the mile, Sometimes I trailed everyone on a cross-country course by two, three, four minutes. I ran because I loved to run, and yet after every race, strangers came to thank me, cry over me, tell me what an inspiration I was. To them, I was not just another hopelessly slow, tenacious high school athlete, but supercrip, tragic, brave kid with CP, courageous cripple. It sucked. The slogan on one of my favorite t-shirts, black cotton inked with big fluorescent pink letters, one word per line, reads PISS ON PITY.
Me lurching up the mountain is another kind of supercrip story, a story about internalizing supercripdom, about becoming supercrip in my own mind’s eye, a story about climbing Mount Adams last summer with my friend Adrianne. We had been planning this trip for years. Adrianne spent her childhood roaming New Hampshire’s White Mountains and wanted to take me to her favorite haunts. Six times in six years, we set the trip up, and every time something fell through at the last minute. Finally, last summer everything stayed in place.
I love the mountains almost as much as I love the ocean, not a soft, romantic kind of love, but a deep down rumble in my bones. When Adrianne pulled out her trail guides and topo maps and asked me to choose one of the mountains we’d climb, I looked for a big mountain, for a long, hard hike, for a trail that would take us well above treeline. I picked Mount Adams. I think I asked Adrianne, “Can I handle this trail?” meaning, “Will I have to clamber across deep gulches on narrow log bridges without hand railings to get to the top of this mountain?” Without a moment’s hesitation, she said, “No problem.”
I have walked from Los Angeles to Washington, D.C, on a peace walk; backpacked solo in the southern Appalachians, along Lake Superior, on the beaches at Point Reyes; slogged my way up Cottonwood Pass and down South Manitou’s dunes. Learning to walk took me longer than most kids—certainly most nondisabled kids. I was two and a half before I figured out how to stand on my own two feet, drop my heels to the ground, balance my weight on the whole long flat of each foot. I wore orthopedic shoes—clunky, unbending monsters—for several years, but never had to suffer through physical therapy or surgery. Today, I can and often do walk unending miles for the pure joy of walking. In the disability community I am called a walkie, someone who doesn’t use a wheelchair, who walks rather than rolls. Adrianne and I have been hiking buddies for years. I never questioned her judgment. Of course, I could handle Mount Adams.
The night before our hike, it rained. In the morning we thought we might have to postpone. The weather reports from the summit still looked uncertain, but by 10 a.m. the clouds started to lift, later than we had planned to begin but still okay. The first mile of trail snaked through steep jumbles of rock, leaving me breathing hard, sweat drenching my cotton t-shirt, dripping into my eyes. I love this pull and stretch, quads and calves, lungs and heart, straining.
The trail divides and divides again, steeper and rockier now, moving not around but over piles of craggy granite, mossy and a bit slick from the night’s rain. I start having to watch where I put my feet. Balance has always been somewhat of a problem for me, my right foot less steady than my left. On uncertain ground, each step becomes a studied move. Especially when my weight is balanced on my right foot. I take the trail slowly, bringing both feet together, solid on one stone, before leaning into my next step. This assures my balance, but I lose all the momentum gained from swinging into a step, touching ground, pushing off again in the same moment. There is no rhythm to my stop-and-go clamber. I know that going down will be worse, gravity underscoring my lack of balance. I watch Adrianne ahead of me hop from one rock to the next up this tumble trail of granite. I know that she’s breathing hard, that this is no easy climb, but also that each step isn’t a strategic game for her. I start getting scared as the trail steepens, then steepens again, the rocks not letting up. I can’t think of how I will ever come down this mountain. Fear sets up a rumble right alongside the love in my bones. I keep climbing. Adrianne starts waiting every 50 yards or so. I finally tell her I’m scared.
She’s never hiked this trail before so can’t tell me if this is as steep as it gets. We study the topo map, do a time check We have many hours of daylight ahead of us, but we’re both thinking about how much time it might take me to climb down, using my hands and butt when I can’t trust my feet. I want to continue up to treeline, the pines shorter and shorter, grown twisted and withered, giving way to scrub brush, then to lichen-covered granite, up to the sun-drenched cap where the mountains all tumble out toward the hazy blue horizon. I want to so badly, but fear rumbles next to love next to real lived physical limitations, and so we decide to turn around. I cry, maybe for the first time, over something I want to do, had many reasons to believe I could, but really can’t. I cry hard, then get up and follow Adrianne back down the mountain. It’s hard and slow, and I use my hands and butt often and wish I could use gravity as Adrianne does to bounce from one flat spot to another, down this jumbled pile of rocks.
I thought a lot coming down Mount Adams. Thought about bitterness. For as long as I can remember, I have avoided certain questions. Would I have been a good runner if I didn’t have CP? Could I have been a surgeon or pianist, a dancer or gymnast? Tempting questions that have no answers. I refuse to enter the territory marked bitterness. I wondered about a friend who calls herself one of the last of the polio tribe, contracting the disease just before the vaccine’s discovery. Does she ever ask what her life might look like if she had been born five years later? On a topo map, bitterness would be outlined in red.
I thought about the model of disability that separates impairments from disability. Disability theorist Michael Oliver defines impairment as “lacking part of or all of a limb, or having a defective limb, organism or mechanism of the body.” I lack a fair amount of fine motor control. My hands shake. I can’t play a piano, place my hands gently on a keyboard, or type even 15 words a minute. Whole paragraphs never cascade from my fingertips. My long hand is a slow scrawl. I have trouble picking up small objects, putting them down. Dicing onions with a sharp knife puts my hands at risk A food processor is not a yuppie kitchen luxury in my house, but an adaptive device. My gross motor skills are better but not great. I can walk mile after mile, run and jump and skip and hop, but don’t expect me to walk a balance beam. A tightrope would be murder; boulder hopping and rock climbing, not much better. I am not asking for pity. I am telling you about impairment
Oliver defines disability as “the disadvantage or restriction of activity caused by a contemporary social organisation which takes no or little account of people who have physical [and/or cognitive/developmental/mental health impairments] and thus excludes them from the mainstream of society.” I write slowly enough that cashiers get impatient as I sign my name to checks, stop talking to me, turn to my companions, hand them my receipts. I have failed timed tests, important tests, because teachers wouldn’t allow me extra time to finish the sheer physical act of writing, wouldn’t allow me to use a typewriter. I have been turned away from jobs because my potential employer believed my slow, slurred speech meant I was stupid. Everywhere I go people stare at me, in restaurants as I eat, in grocery stores as I fish coins out of my pocket to pay the cashier, in parks as I play with my dog. I am not asking for pity. I am telling you about disability.
In large part, disability oppression is about access. Simply being on Mount Adams, halfway up Air Line Trail, represents a whole lot of access. When access is measured by curb cuts, ramps, and whether they are kept clear of snow and ice in the winter; by the width of doors and height of counters; by the presence or absence of Braille, closed captions, ASL, and TDDs; my not being able to climb all the way to the very top of Mount Adams stops being about disability. I decided that turning around before reaching the summit was more about impairment than disability.
But even as I formed the thought, I could feel my resistance to it. To neatly divide disability from impairment doesn’t feel right. My experience of living with CP has been so shaped by ableism—or to use Oliver’s language, my experience of impairment has been so shaped by disability—that I have trouble separating the two. I understand the difference between failing a test because some stupid rule doesn’t give me more time and failing to summit Mount Adams because it’s too steep and slippery for my feet. The first failure centers on a socially constructed limitation, the second on a physical one.
At the same time, both center on my body. The faster I try to write, the more my pen slides out of control, muscles spasm, then contract trying to stop the tremors, my shoulder and upper arm growing painfully tight. Even though this socially constructed limitation has a simple solution—access to a typewriter, computer, tape recorder, or person to take dictation—I experience the problem on a very physical level. In the case of the bodily limitation, my experience is similarly physical. My feet simply don’t know the necessary balance. I lurch along from one rock to the next, catching myself repeatedly as I start to fall, quads quickly sore from exertion, tension, lack of momentum. These physical experiences, one caused by a social construction, the other by a bodily limitation, translate directly into frustration, making me want to crumple the test I can’t finish, hurl the rocks I can’t climb. This frustration knows no neat theoretical divide between disability and impairment. Neither does disappointment nor embarrassment. On good days, I can separate the anger I turn inward at my body from the anger that needs to be turned outward, directed at the daily ableist shit, but there is nothing simple or neat about kindling the latter while transforming the former. I decided that Oliver’s model of disability makes theoretical and political sense but misses important emotional realities.
I thought of my nondisabled friends who don’t care for camping, hiking, or backpacking, They would never spend a vacation sweat·drenched and breathing hard halfway up a mountain. I started to list their names, told Adrianne what I was doing. She reminded me of other friends who enjoy easy day hikes on smooth, well-maintained trails. Many of them would never even attempt the tumbled trail of rock I climbed for an hour and a half before turning around. We added their names to my list. It turned into a long roster. I decided that if part of what happened up there was about impairment, another part was about desire, my desire to climb mountains.
I thought about supercrips. Some of us—the boy who bats .486, the man who through-hikes the A.T.—accomplish something truly extraordinary and become supercrips. Others of us—the teenager with Downs who has a boyfriend, the kid with CP who runs track and cross-country—lead entirely ordinary lives and still become supercrips. Nothing about having a boyfriend or running cross-country is particularly noteworthy. Bat .486 or have a boyfriend, it doesn’t matter; either way we are astonishing. In the creation of supercrip stories, nondisabled people don’t celebrate any particular achievement, however extraordinary or mundane. Rather, these stories rely upon the perception that disability and achievement contradict each other and that any disabled person who overcomes this contradiction is heroic.
To believe that achievement contradicts disability is to pair helplessness with disability, a pairing for which crips pay an awful price. The nondisabled world locks us away in nursing homes. It deprives us the resources to live independently. It physically and sexually abuses us in astoundingly high numbers. It refuses to give us jobs because even when a workplace is accessible, the speech impediment, the limp, the ventilator, the seeing-eye dog are read as signs of inability. The price is incredibly high.