Me & Mount Adams: A Super-Crip Story

Me & Mount Adams: A Super-Crip Story

By Elizabeth Clare

Elizabeth Clare on top of a mountain (not Mount Adams) in New Hampshire's White Mountain Rance

PHOTO: Adrianne Neff

A boy without hands bats .486 on his Little League team. A blind man hikes the entire Appalachian Trail. An adolescent girl with Downs Syndrome learns to drive and has a boyfriend. A guy with one leg runs across Canada. The nondisabled world is saturated with super-crip 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.

Super-crip 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 super-crip crap, the believe-it-or-not disability story.

I've been a super crip 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 even in 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 and tenacious high school athlete, but super crip, tragic brave girl with cerebral palsy, courageous cripple. It sucked. I hated it just as I hate pity. The slogan on one of my favorite t-shirts, black cotton inked with big florescent pink letters, one word per line, reads PISS ON PITY.

***

And now I want to tell another kind of super-crip story, a story about internalizing super cripdom, about becoming super crip 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 the 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 over Cottonwood Pass and down South Manitou's perched 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 "special" 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. Part of what I love about mountains is this exact 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 a problem for me, not a big one but nonetheless a problem, 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 the 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 for me every fifty 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 live 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 tumbled 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, ballet 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, born just before the polio vaccine's discovery . Does she ever ask what her Iife might look like had she been born five years later? On a topo map bitterness would be outlined in red.

I thought about the model of disability that separates impairment from disability. Disability theorist Michacl 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 fifteen words a minute, much less fifty, whole paragraphs cascading 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 organization which takes no or 1 little account of people who have physical [and/or mental] 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 a meal, in grocery stores as I fish coins out of my pocket to pay the cashier, in parks as I put the leash back on my dog. I am not asking for pity. I am telling you about disability.

In large part, disability 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 simply feels wrong. 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 school rule won't give me more time and failing to summit Mount Adams because it' s too steep and slippery for my feet. But both kinds of failure are intimately connected to my CP. And in both cases, frustration comes crashing down, making me want to crumple the test I can't finish, hurl the rocks I can't climb. Frustration knows no neat theoretical divide. Neither does disappointment nor embarrassment. There is nothing simple about separating the anger I turn inward at my body from the anger that needs to be turned outward, directed at the daily ableist shit; nothing neat about kindling the latter kind of anger and transforming the former. I decided that while Oliver's model of disability helps me make sense of ableism and the social construction of disability, it doesn't help me untangle the many feelings I have about living with CP.

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 about other friends who enjoy easy day hikes on smooth, well-maintained trails. Many of them would never even attempt the tumbled trail of rocks I climbed for an hour-and-a-half before turning around. We added their names to my list. It turned out to be a long roster. I decided that if part of what happened to me up there was about impairment, another part was about desire, my desire to climb mountains.

I thought about super crips. Some of us - the teenager with Downs who has a boyfriend, the girl with CP who runs track and cross country - lead entirely ordinary lives and become super crips. Nothing about having a boyfriend or running cross country is particularly noteworthy or inspirational. Yet when disabled people engage in these activities, nondisabled people find us astonishing. Others of us - the boy who bats .486, the man who thru-hikes the A.T. - accomplish something truly extraordinary and become super crips. Yet nondisabled people don't celebrate the extraordinary feat of batting .486 when they create the super crip story about the boy without hands. Instead, their story relies on the perceived contradiction between disability and achievement, however ordinary or amazing. This contradiction creates the unspoken center of the super-crip crap, inspiring nondisabled people and reassuring them that impairment can in truth be overcome.

To believe that achievement contradicts disability is to pair helplessness with disability, a pairing that disabled people pay an incredibly high price for. The nondisabled world locks us away in nursing homes. It deprives us the resources to live independently. It physically, sexually, and emotionally 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 respirator, the seeing-eye dog are read as signs of inability. The price is high.

***

And here super crip turns complicated. On the other side of super cripdom lies pity, tragedy, and the nursing home. Disabled people know this, and in our process of knowing, some of us internalize the crap. We make super crip our own, particularly the type that pushes into the extraordinary, cracks into our physical limitations. We use super cripdom as our shield.

I climbed Mount Adams for an hour-and-a-half scared, not sure l'd ever be able to climb down, knowing that on the next rock my balance could give out, and yet I climbed. Climbed surely because I wanted the summit, because of the love rumbling in my bones. But climbed also because I wanted to say, "Yes, I have CP, but see. See, watch me. I can climb mountains too." I wanted to prove myself once again. I wanted to overcome my CP.

Overcoming has a powerful grip. Back home, my friends told me, "But Elizabeth, you can walk any of us under the table." My sister, a serious mountain climber who spends many a weekend high up in the North Cascades, told me, "I bet with the right gear and enough practice you could climb Mount Adams." A woman who doesn't know me told Adrianne, "Tell your friend not to give up. She can do anything she wants. She just has to want it hard enough" I told myself as Adrianne and I started talking about another trip to the Whites, "If I used a walking stick, and we picked a dry day and a different trail, maybe I could make it up to the top of Adams." I never once heard, "Elizabeth, you made the right choice when you turned around." The mountain just won't let go.

And neither will super crip. She resides in me, alive and well, ready and willing to push her physical limitations, to try the "extraordinary," because down at the base of the mountain waits a nursing home.

***

Someday after the revolution, disabled people will live ordinary lives, made neither heroic nor tragic. Super crip will be dead; the nursing home, burnt down. Still I expect there to be mountains I want to climb and can't, but I'II be able to say without doubt, without hesitation, "Let' s turn around here. This one is too steep and slippery for my feet."

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The above essay will be published in a book of poems and essays by Elizabeth Clare, "Grace Lives Tangled & Strong," by South End Press in the Spring of 1999.