14
September
2016
|
03:00
Europe/Amsterdam

The (de)composition of a recovering Paralympian

Former Paralympian and current professor Danielle Peers offers a deeply personal account of coping with the complicated politics of disability as she competed in elite wheelchair basketball.

By DANIELLE PEERS

The interrogation

It is dark here. I am alone, or at least, I feel alone. It feels like years since I have been here: since they have been asking me the same questions; since they have been trying to figure out who, exactly, I am. Am I the innocent victim? Their hostile witness? Their suspect? The criminal-cheat? I am finally broken down. I give up. I am ready to confess the truth … I’m just not sure which truth to tell.

The door slams shut, and a body ambulates into my space with an uncomfortably even bipedal gait. I wince. Another normate. Was it too much to hope for the smooth glide of rubber on cement, the rhythmic quadruped clicking of crutches, or the tap-tap-tapping of a cane?

The light is in my eyes and I am tired. I can’t tell who it is this time: is it the reporter? The classifier? The doctor? Is it you, reader? The achingly familiar questions cut off my line of thought. The interrogation begins, “What did you do to yourself?”

I pause, stumbling on how to start. The voice sighs, turning impatient at what it can only be read as belligerence. I know they are expecting an origin narrative: a traumatic story with sirens and scars; a firm date etched onto my body and into my mind.

“When did you become disabled? How did it happen? What’s your disability, anyways? Is there a cure?”

I start as close to the beginning as my mind can reach. “There was an accident,” I begin, “It was about a hundred and twenty years ago …”

Creation stories

In the world of competitive disability sport, or what I henceforth call parasport, we love to tell stories about our origins. We tell stories about heroic, white, able-bodied biomedical doctors who invented new sports to save poor, useless disabled war veterans. We tell stories of the tragic diseases and accidents that created the biomedical disabilities in our athletes’ bodies. We tell inspirational stories about the heroic, hyper-able disabled athletes who have used sport to overcome their tragic biomedical disabilities and to live more normal and productive lives. We, as athletes, hear these stories in newscasts, we read them on parasport websites, and we are asked to repeat them every time we take up a new sport, every time we are classified, every time we are interviewed by the media, every time we are asked what we do and who we are. We are asked to tell the truth about our disabilities and their origins. We are asked for our own personal creation stories … but do we ever ask ourselves where these stories come from? Do we ever ask ourselves what kind of selves, and worlds, these stories help to create?

Just tell me the truth

It seems like such a simple imperative: tell the truth. As if there were one. As if there weren’t many. As if any of them would be believable, or even understandable, without a coherent progressive narrative, without strategic omissions, without a metaphor or two.

It seems like such a simple concept: disability. As if I had one. As if all my bodily experiences were traceable to that one source. As if the symptoms laid themselves out in a simple chronological trajectory. As if each feeling unfolded from my body with its linguistic description in tow. As if the myopathic pains and weaknesses were colour-coded. As if I had access to a non-myopathic body with which to compare my own. As if there were such a thing as a non-myopathic body.

“Just tell me the truth,” they implore, almost kindly, “just tell me the truth about your disability.” As if the telling wasn’t a form of creation. As if the asking wasn’t a form of discipline. As if the answers weren’t dangerous. As if “just” had anything to do with it.

Forgive me, doctor, for I have sinned

I am in a loud, sweaty gymnasium at the National Wheelchair Basketball Championships. I am walking my chair across the gym after a game when one of the official tournament classifiers calls me over. “What’s your disability?” she asks, pen and paper in hand. “I don’t have one,” I answer. She looks me up and down, a bit incredulous, as though I am withholding something (perhaps unwittingly) that my body will betray. “Have you always walked like that?” she asks. “Like what?” I answer. She has me walk back and forth across the gym. She watches, as if there is some hidden meaning to my steps. I feel awkward, almost naked, under her gaze, yet I am strangely eager to comply: she is kind, she is smart, she is an expert, and she is in a position to try to get me classified—that is, declared disabled enough to be eligible to try out for the national team.

“Do you have any weakness or pain in your legs?” she asks, gesturing for me to sit and then performing some basic strength tests on each of my legs. “There were lots of accidents,” I try to explain. “I fell while walking up stairs, while riding my bike, while trying to sit down on a chair. I fell, often. I had sore knees whenever I played sports. My parents took me to the doctors when I was seven, and nine, and eleven, and almost every year after that. The doctors asked me a bunch of questions and put me through a bunch of tests. They told me that I had bilateral patella tendinitis. They told me that I needed daily physiotherapy to normalize my muscle imbalances. I went, every day, but it never got better. The doctors then told me that I had muscle imbalances from being a girl and playing sports. They told me that I needed to stop playing sports. So finally, after 12 years of physio, I gave up and started playing wheelchair ball.”

The classifier listens patiently, nodding as I speak. “Well, we can’t classify you for having bilateral patella tendonitis,” she declares. This is something I already know. I’ve done my research. To be classified, I need to have concrete, measurable evidence of a permanent disorder that would make me unable to play able-bodied sports normally. Pain doesn’t count. They can’t quantify pain. Disability, apparently, is something you can point to and measure. The classifier continues, “There may be something underlying this condition, however, that is classifiable.” My heart both sinks and sings. The questions begin again: “Have you always walked like that? Does anyone else in your family walk this way? Did you start walking later than normal? Do you have trouble learning? Have you ever seen a neurologist?” I try to answer as truthfully as I can, although unsure of what the true answers are. This isn’t a story about myself that I am familiar with, yet.

After all is said and done, she speaks the words that will change my life, forever: “I think you should see a neurologist. I think you may be classifiable.”

“This is very, very interesting”

I am in a cramped doctor’s office. A kind and confident neurologist with piercing eyes is looking over a binder of medical records that I collected for this very occasion. He starts where the classifier left off: “When did you start walking? Why did you go to these doctors? Where does it hurt? How bad? How long? How hard? How little? How often? How come?” This time I am somewhat prepared for the questions. I am able to answer most of them as though they had been a truth that had been with me since I was a child: as though I always felt abnormal rather than simply in pain. The interrogation ceases for long enough to send me for a needle electromyography, a muscle biopsy and clinical strength assessments: “Walk like this; stand like this; bend this; lift this; push against this; do this; do this again; try a bit harder at this; this … this is very, very interesting.”

The doctor sits me down and looks at me solemnly. “Well, kiddo,” he starts, “I wish I had better news for you.” I brace myself for the worst that I can imagine: that he will have found nothing that he can measure; that I will be told to stop playing sports; that I will be told that it is all in my head; that it will be blamed on my gender; that I won’t be classifiable. “You have a progressive, genetic myopathy,” he declares. “We will need more tests to find out the exact type but it is likely a kind of limb girdle muscular dystrophy.”

I have a hard time concealing my relief. A smile climbs the corners of my lips. I ask him if he can write the diagnosis on a letter for me, and send it with my tests to the classifiers. The doctor agrees to send the letter, but is dismayed by my reaction. He kindly informs me that I don’t understand. He is probably right. “This is progressive,” he repeats, “and there is currently no treatment or cure. At some point down the road, you will likely end up in a wheelchair.” The last word is emphasized as though this is the worst of all possible fates. I check my smile and will myself into a more appropriately disturbed expression. He seems relieved by this: “Don’t worry, kiddo, we will get you into physiotherapy to try to keep you moving as normally as possible for as long as we can.”

As I get up to leave, he chirps in with one final question, “Are you planning on having children?” I shake my head in the negative. “OK, if you change your mind,” he warns, sternly, “you should see a geneticist. Ensure your kids turn out normal.”

And that’s it. I walked into his office able-bodied, and was now walking out disabled.

“Just how disabled are you?”

 

I am in a small hotel room, days before the Paralympic qualifiers. I am sitting on the floor beside two other athletes, watching and listening to a fourth athlete being grilled by a small panel of classifiers. I hear one classifier ask the athlete: “Do you have normal feeling down there? Do you have normal sexual function?” The athlete looks over at us and squirms. I can’t help but wonder what this has to do with wheelchair basketball.

I have read up a bit on classification in my sport, since I was diagnosed a few months back. I have read about how athletes are given a ranking between 1.0 and 4.5, from the most to the least disabled, according to their functional ability to perform skills on the basketball court. Yet, here I am in a hotel room, without a ball or a chair. All I have is a thick binder of medical results and my fear.

The athlete ahead of me is dismissed, along with the appeal for reclassification. I am called to the table. As I get up from the floor and walk towards them, I can see them watching me with disdain, as if I have lied before I have even spoken. I hand the binder over to the committee. One of them flips through it carelessly, like a bad magazine in a doctor’s waiting room. Another looks me up and down: “So, what disability are you claiming?”

I search for the most honest answer that I can find: “I have an as-of-yet unspecified lower limb myopathy.” The classifiers all look up at me, one repeats, “Unspecified?” I can tell by the tone of his voice that unspecified means not measurable, means unclassifiable, means it is all in my head. I jump to my own defence: “I have a form of limb girdle muscular dystrophy.” It is only a partial lie: it might be LGMD; it might as well be LGMD.

“Muscular dystrophy, heh?” one classifier asks. “You look fine to me.” The second one chimes in: “How did it happen?” How? My mind reels, looking for any kind of plausible answer: an event, an origin, an accident, a creation story. I start as close to the beginning as my mind can reach: “There was an accident,” I begin. “It was about 120 years ago, perhaps even longer. Some key genetic sequence in the muscular code of one of my great-grandparents (or perhaps, one of their great-grandparents?) shifted and was passed along through at least three generations of my family, undetected, though not unfelt…”

“Will it get worse? Is there no cure?” interrupts one of the classifiers, almost hopefully.

“It is progressive,” I start, finding myself parroting the words and tone of my neurologist. “There is currently no treatment or cure. At some point down the road, I will likely end up in a wheelchair.” I emphasize the last word as though this is the worst of all possible fates. The mood of the panel lightens. One of the classifiers drops her pencil case on the floor in front of me.

“Pick that up,” she orders. I bend over, pick up the case and return it to her. Their eyes follow my movements, this time with more disinterest than disdain. “4.5,” she declares. The other classifiers nod, one writing it down on an official-looking sheet, the other handing me back my unread binder. As I stand up to leave, one of them adds, as though it were a kindness: “Make sure not to smoke. MD can hit your lungs. You can die from that, you know.” I nod, trying to get out of the room as fast as I can. “And no babies!” she calls to me as I pass the remaining athletes on the way out the door: “They could end up like you!”

I thought that this classification would be the last time that my disability would be interrogated, examined and declared. It turns out that it was only the beginning. I was to learn, in the years to come, that there are many, many different thresholds, ideas, examinations and experts of disability. As I ambulated out of that classifier’s hotel room, I was still able-bodied to the parking police, to the federal government, to my friends and family, to strangers on the street and, for the most part, to myself. My body and identity had not yet fallen under their surveillance, or under my own surveillance. I still had a lot of disability left to learn, and to become.

C’mon gimp!

 

I am at a house party, introducing myself to friendly-looking strangers. “What do you do?” one asks. “I just quit my job,” I respond, proudly. “I am now a full-time athlete.” The surrounding partygoers look suitably impressed. I see a few of them eyeing up my skinny legs and strong shoulders, trying to guess my sport by my build. “What do you play?” one asks. “Wheelchair basketball,” I respond, “I’m going to the Paralympics in September.” The mood noticeably shifts. “Isn’t that cheating?” one of them shouts, accusingly. I try all possible explanations, hoping to quell their horror: “Half of us who play in Canada are able-bodied … there is this thing called classification….” The horror remains. I grasp for the last truth I have at my disposal: “I have muscular dystrophy.” I watch them eyeing up my frame again, this time focusing on my legs. I suddenly feel naked. I look into their eyes and I see pity slowly replacing their confusion and rage. The interrogation begins: “What exactly is that? When did you get it? Does it get worse? Will it kill you? Is there a cure?”

I am in the Paralympic Village, in Athens. I enter the meal hall with my teammates and a volunteer immediately asks me if my athletes require assistance. As a walker among wheelers and crutchers, I am assumed to be the coach. I explain that I am an athlete. The volunteer moves his head side to side, looking at my eyes to ascertain if I am blind. An American athlete laughs as he walks by. “That’s why I always wear shorts,” he says. I look down to see star-spangled metallic shins sticking out from his khakis. We eat and head back to our residence 12 village blocks away. My teammates wheel and crutch with ease, stopping every five minutes to let me and my sore, tired legs catch up. “C’mon gimp!” one of them jokes. “Can’t you just get yourself some crutches or a chair?” complains another. I have crutches. They are hidden in my bag, in my room. I can’t bring myself to use them in public. I know they will make me feel even more like an imposter or a faker, even if they make me look less like one, here. If I can walk without crutches, then I shouldn’t really use them, should I?

I am on a small island in Greece, far away from the Paralympic Village. My partner goes out every day without me. The walks all seem too far, too steep, too long. By day four I dig to the bottom of my bag and pull out my crutches. My anonymity here makes it feel somehow safer than with my teammates or at home. I leave for the longest walk I have taken in five or six years. It feels so empowering. After a half hour, I gain the confidence to raise my eyes from where my shaky crutches click down on the uneven cobblestone terrain. All I see are stares: children and adults, tourists and locals, all staring at my awkward quadruped gait. A woman approaches, reaches up and puts a hand on my head. She holds a rosary in one hand and speaks loudly and quickly in Greek. “Believe in him,” she commands in broken English, pointing to the sky. “Believe and he make you better.” I fight off the urge to drop my crutches and walk miraculously. I laugh at the thought. The laughter helps me hold back the tears.

I am in an airport, on the phone to a reporter from Chatelaine magazine. She asks me: “How does it feel to no longer walk?” I tell her that I still walk. There is a full five seconds of silence on the phone, followed by the angry and confused outcry: “But you’re a Paralympian!” I spend 30 minutes explaining classification, muscular dystrophy and the social construction of disability to the reporter. One month later, the Chatelaine article headline reads, How It Feels to No Longer Walk.

I am in my hometown. I am feeling both courageous and frustrated enough to go out on crutches. I brave my favourite local restaurant. “What did you do to yourself?” laughs the regular waitress as if expecting a funny story of drunken debauchery. I think back to the partygoers and to my classification as I search for a story to tell: “I have a degenerative disease,” I inform her, “muscular dystrophy.” The waitress’s eyes well up with tears and she rushes back into the kitchen apologizing profusely for her insensitivity as she runs. I want to apologize for mine. We don’t have to pay for dessert that day. I never eat there again. For the next two years, I only take the crutches to restaurants that I haven’t gone to before. When the crutching starts to become too difficult, I move to France for a year with my brand new wheelchair. It is just easier than trying to explain.

“Cheater! Cheater! Faker!”

I am in my own home, being photographed for a magazine article. I am in my day chair, carefully posed in front of a screen and various props. The photographer talks at me as he shoots: “I think it is so inspirational, what you are doing … OK, smile … to have done so much despite having a handicap, so young, I mean, so sad, really … turn your chin … but, I mean, it must have been so cool going to the Special Olympics!” I jump in with the automatic and emphatic correction: “I went to the Paralympics, not the Special Olympics!” I can hear my teammates’ usual angry, ableist responses in my head: “Do I look like a retard to you? Special Olympians aren’t really athletes but we are, we train and compete just like Olympians.” Before I can start to explain, he cuts me off: “Now, smile … perfect! But, I mean, doesn’t it piss you off when all these other disabled people just use it as an excuse to lie around all day and live off our tax dollars when you are out there trying to make something of yourself?” I try to respond, but he interrupts by telling me to go change into a black shirt. My chair is surrounded by props and I just want the shoot to be over as soon as possible. I stand up out of my wheelchair to grab the shirt. The photographer starts yelling at the top of his lungs: “Cheater! Cheater! Faker!” His accusatory finger points alternately at me and at my chair as he moves towards me. I manage to finally calm him down though my obedient, tragic recital of the pain and fatigue of my degenerative neuromuscular disease.

I am in Amsterdam for the World Championships. My team is at our classification practice, where we practise under the surveillance of the tournament classifiers to ensure everyone’s classification is correct. My coach has us play left-handed, hoping it will emphasize players’ weaknesses. He is disappointed that I am ambidextrous. I hear my number called, and my stomach clenches. I can almost smell the classifier’s hotel room from two years back. I wheel, nervously, up to the classification table. They are holding my medical file in their hands. The interrogation begins: “When did it start getting worse? Why is it getting worse? What do you now have trouble doing? How is this affecting your playing?” I answer each question as solemnly and medically as I can. The panel seems receptive, perhaps even worried at the quick progression. They put me through a handful of precise exercises, no pencil case this time: “Pick up the ball; hold it like this; now over here; do that again; pull as hard as you can.” They watch, nodding to each other, and then send me back off to practice, where they watch me play some more. Finally, near the end of practice, they pull me over and inform me: “We have dropped your classification from 4.5 to 3.5; we may raise or lower you more after we watch you throughout the competition.” My hands start shaking and my eyes start filling with tears. They are expecting me to smile. I thank the committee and barely make it out to the hall before the tears start to fall. This drop in classification seems to objectify all that I have lost: every muscle weakened, every skill dropped, every ability diminished, and every fear of what I will lose next. My coach finds me in the hallway, sobbing. He can only read them as tears of joy: “Congratulations!” he shouts as he offers me an awkward hug. To him, my lowered classification only means that he can play stronger players on a lineup with me. I force a smile back at him. I am an athlete at a World Championship, I tell myself. I should be happy for the team, not feeling sorry for myself.

“I’m not that kind of gimp”

I am in the gym. It could be any gym. My classification card, with my name, birthdate, nationality and classification, is handed to the scoring table, to the referees and to the tournament classifiers, who measure my chair and check all my strapping to ensure it is appropriate for my classification level. My classification, and often my diagnosis, is printed on the rosters, in the tournament handouts, on the team website, in the media. Both my classification and diagnosis are debated by my teammates, coaches, adversaries and even fans. Everyone is an expert on disability and classification, it seems. They watch and videotape while I play, while I transfer between chairs, while I ambulate through an inaccessible doorway. I know this because we do the same to the players on the other teams: “She’s not really a 2.0; she sure plays like a 4.0; can a class 1.0 really do that? Quick, catch that on film!” I feel as though everyone in the gym can see me. As though they will “catch” my ever-shifting body in a movement that is deemed above or below the rigid, textbook expectations of class 3.5. I tilt up on one wheel to grab a ball and a coach yells out, “That looks like a class 4.5 to me!” If I am deemed too strong, I am seen as a faker and a fraud. I flop down hard after being hit from behind by an American player, who jabs: “Look who is acting like a class 1.0 now.” If I am deemed too weak, I am seen as a faker who is just not trying hard enough. I feel the constant surveillance on my skin, in my hips, in my deepest scariest corners. I question my own classification. I observe and control my own movements. I restrain the more normal, rested gait at the start of a tournament, and attempt to hide the heavy, tired limping at the end of a tournament. I go to stand up after a game to change my shorts and a teammate warns me to sit back down. “They may be watching,” her look seems to say, as though it is taken for granted that I have something to hide.

I am exhausted from an overseas flight and from wheeling all the way across a large, carpeted airport. I am enjoying the relative rest of wheeling down a ramp towards the plane when the flight attendant asks, in her most condescending voice, if I want help. “I’m fine, I’m a Paralympic athlete,” I respond. I pop a wheelie, speed down the ramp and jump the curb at the bottom, as if to say, “See, I’m not that kind of gimp.”

I am struggling for my breath and I have decided that I have to skip a wheelchair basketball camp that I have been organizing for months. I can’t bear the thought of not going but I don’t want the athletes to see me like this; I want them to remember me as the super-able athlete that I used to be. A close friend suggests that I get myself some oxygen. My stomach tightens and I feel like crying. I can recognize the ableism in my response, but I can’t help but feel it: “I don’t want to look that gimpy,” I explain. “Oxygen doesn’t make you look gimpy,” she consoles me, “it makes you look sickly.” She is right, of course. She convinces me to get the oxygen. I go to the event with a renewed physical energy, tubes up my nose and a new, incredibly uncomfortable identity: I am no longer the supercrip; I am the sickly gimp.

I am alone, in my hotel room, after a hard day of coaching. My diaphragm and intercostals burn with exhaustion, and my sinuses itch from the stale, dry oxygen shooting through the tubes up my nose. A cough wells up deep in my fluid-filled lungs and I look longingly towards the bathroom sink, a mere eight feet away. I am doing the math in my head: imagining a fatigued one-handed transfer into my day chair, the other hand wrestling with the heavy oxygen tank and the latex leash that wraps around my neck and ears, connecting the tank to my struggling lungs. I calculate the pull of the thick rug as it drags me into the wall with every push, and the scrape of my knuckles as I cross through the impossibly skinny bathroom door, invariably hooking the oxygen hose on the doorknob as I wheel by. With the cough now climbing my chest painfully, I vouch for the alternative: I pull the cannula from my nose, unhook it from my ears and neck, pull myself off the bed and ambulate the seven steps to the bathroom sink. And here, hunched over the bathroom sink coughing, I cringe at the sound of the hotel room door opening. I look up at myself in the mirror and to the unaccompanied wheelchair and oxygen tank behind me. My stomach clenches as I hear a booming accusatory voice chastising me: “Cheater! Cheater! Faker!” it calls, echoing angrier and angrier. And as my roommate rushes from the doorway to my side to help hold me up as I cough, I recognize that the accusatory voice is not coming from her.

The interrogation, redux

It is dark here. I feel alone, but I know that I am not. It feels like years since I have been here: since you have been asking me the same questions; since you have been trying to figure out who, exactly, I am. Am I the innocent victim? Your hostile witness? Your suspect? Your criminal-cheat?

The door slams shut and a body moves into my space. I can almost make out who it is, this time. Is it another normate? Is it a fellow crip? It is it you, again, reader? The interrogation begins:

“What did you do to yourself?”

I have composed myself as a disabled person, a Paralympian, a supercrip.

“When did you become disabled?”

Most recently? Just now.

“How did it happen?”

Through your questions, my answers, these stories, your gaze.

“What’s your disability, anyways?”

Disability itself.

“Are they working on a cure?”

We are. Are you?

Danielle Peers is an assistant professor in the Faculty of Physical Education and Recreation at the University of Alberta. This article is an excerpt from an academic paper first published in 2012 in the journal Qualitative Research in Sport, Exercise and Health.