Adventures of a Super Crip

By Emily Rapp in Features, March | April 2015 on February 26, 2015 at 2:16 pm | 1 Comment

What life is like when everyone assumes you are a hero.

Earlier this year, as I was boarding a flight, the gate agent watched me approach the entrance to the jetway, scanned my boarding pass, looked me in the eye and said, “Thank you for your service.” Confused, I responded with a mumbled, “You’re welcome.”

The flight attendants seemed unusually solicitous. “Don’t you have to pay for these now?” I asked a very friendly woman who brought me a blanket. “After the whole SARS thing?”

“Oh, don’t worry,” she said, and sashayed toward the lavatory. Every five seconds I was asked if I could be made more comfortable, the flight crew doing everything short of offering me a glass of chardonnay at 10 in the morning.

As the plane landed, an announcement was made: “We’d like to give a round of applause to the veterans who’ve served our country and are flying with us today.” The friendliest attendant looked right at me, and any passengers who weren’t tucked into their hand-held electronics vigorously applauded, many of them in my direction. A quick scan of the seats around me yielded nobody in army fatigues or uniforms. Mortified, I finally realized that the flight crew—and a plane full of strangers—believed me to be a member of the armed services.  I hurried off the plane before I burst into tears or laughter, not sure which, in this moment, would be more appropriate.

I am not a veteran or an armed-services member. What little I know of  wartime conflict I learned from movies like Saving Private Ryan and Platoon. I do, however, wear an artificial limb as a result of a birth defect and the amputation of my left foot at age four.

Because I began wearing my leg at such a young age, I was very comfortable with the fact of a prosthetic limb, at least until the self-consciousness of puberty hit. It’s a story I have told many times to new veterans in prosthetic offices, men and women who are adapting to limb loss much later in life. I accepted the leg, I tell these nervous new amputees, with its shiny wood and metal hinges, as just a part of my body, just something to work around. I can see that these stories put them at ease; that although our narratives of physical change are different, we’re all in the same boat now. We have to be casted, fitted, and measured in our underwear, marked with lipstick around the butt and thighs during the build of the leg to ensure proper fitting. We have to walk down makeshift runways, holding onto bars, finding, as one of my prosthetists often joked, “our sea legs.”

Other stories I tell them: After each of my many orthopedic operations spanning the years 1978-85, all scheduled during Christmas break, I watched soap operas, ate oyster crackers and drank 7 Up exclusively, and banned the creepy candy stripers from entering my room. I had a roommate one year who died of leukemia, and whose parents gave me a rabbit pendant that I still wear. I often talk about the Halloween when my cousins and I built a haunted house in their basement. We covered the leg with ketchup and propped it beside a makeshift coffin, where I lay, also covered in ketchup, ready to grimace and groan when the lid was opened, a moment that made my mother go pale and silent. I became an expert downhill skier on one leg, winning races, setting records, feeling freedom, meeting the man who coached me and who deeply transformed my life. “When you’re ready and stronger,” I say in an encouraging voice that is absolutely genuine, “you should try that.”

In college I was famous for tossing the leg off my top bunk at night and asking my roommate to hand it to me in the morning so I could descend the bed’s ladder. When I became a woman, of course, my leg became a source of anxiety and tension. I approach this subject matter tenderly, with both men and women alike, for to say that only women worry about the absence of a leg is untrue. How would it appear in the theater of desire in which I was desperate to play a part? Who would want me? How would I be seen by the world? As a child, I experienced equal amounts of joy and anxiety. “It balances out,” I say, and on some days, I truly mean it. Through all of these phases and experiences, I relied on the skill of prosthetists who fitted me for my legs. “You’re in good hands,” I tell the patients (we’re actually called “clients” now) waiting in reception. “He’ll make you a leg that fits and works wonderfully. Prosthetics have advanced a lot,” I reassure them. This is unequivocally true.

The prosthetist who made my legs from 1978-90 was a veteran of World War II and the Korean War. His bald head was covered in brown spots, one of which was shaped like the state of Florida. He wore a filthy apron that had once been white and steel-toed cowboy boots. Every third word out of his mouth was an expletive—words I had never heard anywhere else. His office was behind a used car lot in Denver. In the back room, while he ground away at the wooden calf of my leg, he smoked cigars and I sat on the table in my underwear, flipping through the pages of an ancient copy of LIFE magazine with stains on the cover and yellowed, curling pages. A motley collection of rubber and foam feet and shiny wooden legs hung from the ceiling on straps, swinging rhythmically under a circulating fan perched on a step stool near the bathroom that smelled of smoke and Clorox. Rather than relinquish his cigar to ask me a question, my prosthetist bit down on it and spoke to me through clenched teeth. I adored him. Apart from me, his patients were all veterans of the Vietnam War who started a lot of sentences with “Hey man,” and called me “little missy” or “girlie.”

Times—and prosthetics—have changed in the three intervening decades. The prosthetist who has made my legs for the past 24 years operates in a clean and efficient office. As the wars have gone on, women have joined the ranks of veterans I meet at the office, and now, at 40, I’m often more than a decade older than some of them. The leg I currently own has a computerized knee—something that would have been prohibitively expensive for a civilian even five years ago. Access, then, to advanced prosthetics, is directly related to our country’s involvement in warfare. Modern war means modern limbs. The ethical equation here is a troubling one, of course, and apart from the nuanced discussions such a cause and effect chain necessarily evokes, the advancement of prosthetics has also changed the view and status of people with disabilities in this country and around the world.

Each time I fly, I must be patted down by a TSA agent, my hands and leg swiped for explosive residue. Without fail, I hear some version of the following: “Wow, I never would have known about your leg,” “You sure can’t tell,” “I’ve never met someone like you before,” or “You’re so brave.” If I had not been wearing my artificial limb and had hopped through security or used crutches, I can imagine the stares, the very different treatment I would receive. My experiences at public pools have taught me that the look given to an obviously disabled person is a mixture of pity and wonder. Because I am able to keep my disability largely hidden, in part due to the quality of my prosthetic, I am deemed acceptable, or better and stranger yet, brave. Brave like a soldier? I always wondered, having met soldiers of various wars, having bonded with them about legs. How did that bravery possibly apply to me? During a particularly lengthy pat-down in the Denver airport, I was taken to a separate room, asked to pull my pants down and was then examined by two women who stared at me with gaping mouths. My leg was then x-rayed and my luggage upended. I asked one of the women who was rifling through piles of my carefully folded underwear if this was the way they would treat someone who had served our country. “Don’t you think it’s intrusive and disrespectful?” I asked. “Homeland Security” was the answer I received.

So veterans with disabilities are applauded for their service, but treated with suspicion as a result of their disabilities. The assignment of bravery to me, as someone who is simply living a relatively quotidian life and happens to have a disability, mystifies to me, although it is not unprecedented. Sociologist Rebecca Chopp coined the term “super crip” to denote the kinds of stories about people with disabilities that make non-disabled people (or the temporarily able-bodied, which is much more accurate) comfortable, in part because they represent such polarizing experience that the non-disabled person feels safe from any thoughts that they might someday become disabled themselves. Stories about disabled athletes are “inspirational.” Stories about 40-something amputee writers with a kid and a job as a professor? Maybe not so “super.” Maybe not the kind of narrative people want to hear about disability. We crave stories about people who triumph, who “overcome” their disability, but this, too, is a false expectation. I have a disability. Does it rule my life? No. But does it deeply affect my life, particularly as a woman and in the way in which I relate to my body? Every single day. The one thing I have in common with these veterans is that your body can be a kind of enemy when you have a disability. It’s a private battle.

In 1990, my leg was a wooden relic from wars past. Two years later, after the Gulf War, I had a hydraulic knee and a new attachment system. Without that war, the first war that I remember, that technology would not have been possible. But I never thought I would ever be mistaken for someone who had done more than watch it on television.

Lately, I’ve been paying more attention to who is heading down the jetway. When the military personnel are allowed to board early, I wonder, as they walk to the front in their uniforms, their military IDs out, what kinds of overlapping experiences we might have. I have not known the horrors of war, but I have known the difficulties of living in a world where people equate disability with misery or lack of ability. I’ve known what it is to be disregarded as a woman as a result of not having a body that is the traditional and acceptable object of desire. I’ve known the pain of amputation and operations to my hips and bones. As I meet them in the prosthetist’s office, I try to remember that although I did not lose my leg in combat, I can relate to veterans. I can assure them that adventure and livelihood are still possibilities, even in the aftermath of war, even with a body that has been permanently altered.

Emily Rapp, MFA ’04, is a graduate of the Michener Center for Writers at the University of Texas at Austin.

Tags: air travel, artificial limb, disability, prosthetics, veterans