Introduction

Last December I broke my right thumb. I broke it playing football, which got me in trouble with the doctors who later told me it was in fact broken. When I broke it I didn't really feel it, and it didn't hurt that badly. In fact, I played through to the end of the game — there wasn't that much of an adjustment to make. The morning after I broke it, it was swollen up to about three times its usual size and was a curious shade of off-purple somewhat reminiscent of Barney the dinosaur. It looked pretty bad and I couldn't really move it, but I wasn't worried — again, it wasn't a big adjustment. About a week later, though, the swelling hadn't gone down and the rather pretty purple color was edging closer to a muddy-brown hue. At the behest of friends and family I resignedly made the trek to the North York General Hospital Hand Clinic, and four hours later, I received the news that my muddied thumb did indeed contain a fracture. The doctors were aghast when I told them I'd waited a week to come in, and I dutifully hung my head and acknowledged their reproofs before returning home with my arm in a bright blue cast down to my elbow that would, the doctors assured me, "make my thumb as good as new."

When it comes to my right thumb, "as good as new" is a rather complicated idea, although I didn't feel like getting into it with the North York Hand Clinic just then. As a result of a birth injury, the right side of my body is affected by a form of cerebral palsy known as right hemiplegia, which means that the sensation and movement (particularly fine-motor skills) throughout the right side of my body is reduced by about 50%. Knowing this may help to explain much of the brief story I related above. My right hand is spastic — it twists and bends in unpredictable ways, and has a slower reaction time to incoming objects than my left hand. In this case, I didn't position my right hand in the proper way to catch an incoming football, and the impact broke a bone in my thumb. Given my dependence on the left side of my body to navigate daily life, the adjustment I have to make when part of my right side is injured is generally minimal. Not seeking medical attention until my thumb starting changing from one dark color to another is a bit harder to explain, and certainly harder to justify. But in a world that's taught me to diminish and devalue the disabled parts of my body, perhaps my reaction is a little less mystifying.

From Break To Cast

The experience of receiving medical attention for any of the disabled parts of my body is always a loaded and complex undertaking. Scholars have pointed out that disability is often "only relevant as [a] problem" (Abberly 1987; Titchkosky 2000). From a social perspective, this notion is certainly compelling, and will be examined in further detail later in this narrative. From a medical perspective, the medical community's development and dissemination of the individual/tragedy model of disability and the oppressive impact this model has on disabled people is well-documented (Driedger, 1989; Gadacz, 1994; Middleton, 1999; Shapiro, 1994; Reeve, 2000; Oliver, 1990). Indeed, the medical establishment has probably done more to promulgate the "tyranny of the normal body" than any other element of society (French, 1994; Kuppers, 2003; Middleton, 1999; Reeve, 2000; Swain et al, 1998; Wilson, 2006). Yet one might at least hope for a degree of comfort with disability within the medical profession, given physicians' training to deal with the endless vagaries of the human body.

When I went to get my right thumb checked out, however, I experienced the same acute discomfort with disability among the North York Hand Clinic staff that I have during previous visits to hospitals. To them, my disability was certainly a "problem" — a far greater one, in fact, than my swollen thumb. When I was first examined, I told the doctor that I'd hurt my thumb playing football. His initial reaction was one of a fellow athlete — he smiled and shared a quick story of injuring a digit of his own on a similar type of play. When I disclosed my right hemiplegia, the doctor's attitude quickly changed from co-conspirator to rebuking professional. If my hand was disabled, why was I trying to catch a football with it? What was my right hand doing anywhere near a fast-moving object? The message was as clear as the tone was paternalistic: disabled people should not be playing sports. In the span of a short minute, my examining physician had used the weight of his medical authority to do disability as dangerously fragile and the disabled person (me) as dangerously irresponsible. It was clear that I didn't know how to take care of my own body, and that he — with his vast store of medical knowledge — knew how to care for it far better than I did.

What's interesting about the belief that disabled people don't know how to care for their own bodies is that it provides an example of how a belief or attitude can in fact create a reality if it germinates long enough. Other writers and scholars have written about this particular type of internalized oppression as it relates to disabled people (Krause, 2005; Middleton; 1999; Reeve, 2000); in her 2005 collection Between Myself and Them: Stories of Disability and Difference, Carol Krause notes that "many of the young adults I spoke to got so fed up with other people telling them how to deal with their bodies that for a while they stopped dealing with their bodies altogether." In my case, fully expecting to be chastised by the doctor for playing sports with a disability certainly did not increase the speed with which I sought medical attention for my injury. By doing disability as excessively fragile and doing disabled people as inadequate caretakers of their own bodies, the medical establishment actually helps to bring about the very type of predicament they claim to be guarding against.

What is it that lies behind the tortured relationship between disability and medicine? In his book The Perfectible Body: The Western Ideal of Male Physical Development (1995), Kenneth Dutton explores the seductive appeal of the notion of the 'perfectible body' as it exists in socioculture, sports, the arts, and genetics. Western medicine as a whole is as invested in the concept of the perfectible body as any of the industries or cultural categories listed above. Indeed, western medicine has a huge stake in selling the idea of the perfectible body to its consumers — both as a means for financial gain and as a way of cementing the infallibility of the philosophical tenets that prop it up. Edges can be rounded; wounds can be healed; diseases can be cured; the asymmetrical can be — should be — evened out. Disability — particularly permanent disability — puts the lie to this ethos. It undermines, stands against, and exposes the perfectible body as a myth. Worse yet, those of us with disabilities who dare to tread upon the hallowed ground reserved for perfectible bodies and minds and who claim this ground as our own — the sports field, the stage, the professor's office — are embodying a new notion: the perfectible body may not only be unnecessary, it may not even be desirable. This kind of notion is one that many practitioners of western medicine have a vested interest in suppressing.

From Cast to 'Good As New'

I arrived home from the hospital tired but feeling as though I was finished with the most complex elements of my thumb-breaking experience. However, the bright blue plaster cast stretching from my hand down to my right forearm proved to be a vehicle that propelled me into a new, equally intricate interpretive dance around disability. This time though, the choreography of interpretive moves was enacted in the social arena as opposed to the medical one.

In the days after my cast was put on, I noticed a curious change in social attitudes towards my right arm. Generally, people (pre)tend not to notice my disability, and when a particular situation compels them to, their acknowledgement of it is awkward and forced. I've long since learned that my disability, apparently, is the kind of impairment you don't talk about casually — it's supposed to be only referred to in whispers and asides. My disability, then, is part of a category of injuries I term the "socially illegitimate" impairments. These types of impairments are the ones that lurk around in the (socially constructed) dark: they are the scary ones, the creepy ones, the ones that overwhelm people who don't have them while those of us who do would be doing just fine if it weren't for the attitudes of everyone else.

All of a sudden, though, my socially illegitimate impairment was disguised by the cast on my arm. Not just disguised — transformed — into that most benign of all injuries: the broken arm! It seems as though everyone has a broken arm story from childhood, and over the course of my two weeks in a cast, I was told (usually unsolicited) plenty of them. It turns out that the broken arm is almost like a rite of passage, which places it about as far from the category of "socially illegitimate" impairment as you can get. I was stunned: was a little blue plaster enough to change my arm from something nobody wanted to talk about to something everybody did?

Quite literally overnight, it seemed as though all the confusion, uncertainty and social awkwardness I deal with around my right arm on a daily basis had disappeared. When I was introduced to people, nobody extended their right hand to shake mine and was discombobulated when I responded with my left. Everybody knew that my right hand was off-limits as a shaker (and shakee) without my having to say anything, and nobody had any issue with it! I could barely conceal my delight at this sudden but profound alteration in my daily social interactions. This change alone almost made me feel like keeping the cast on permanently.

It turns out that the handshake revelation was just the tip of the iceberg. With the cast on, nobody expected me to be able to move or lift large objects and then was disappointed when I couldn't. Nobody was confused when I asked for help cutting open a bag of milk or twisting off a tightly sealed jar. Perhaps most significantly of all, nobody felt uncomfortable about my broken arm. Everyone would simply approach, ask me how it happened, give me a smile and maybe their own story of breaking a finger or arm, and then move on to another topic without a second thought.

In terms of my right arm's day-to-day level of functionality, almost nothing had changed pre-break to post-break. So the net effect of my broken thumb, in terms of actual physically disabling impact, was practically zero. What had changed was the way my right arm was perceived. I began to realize that my plaster cast was acting as a bright-blue signifier that bestowed social legitimacy on a previously illegitimately impaired limb. The smiles, the shared stories, the left hands extended to shake, the acknowledgements of my injury without hesitation or uncertain pauses — all of these are examples of how my arm was now being done as a socially legitimate impairment by the people around me. The contrast with my typical social experiences around my right arm couldn't have been more stark. By breaking my thumb, I'd finally made my right arm 'normal.'

During the first few days of my casted existence, I tried on the role of able-bodied man with a broken thumb with some glee. This was fun! Like Tobin Siebers in his article for the Spring 2004 issue of Literature and Medicine, I was successfully "passing" as non-disabled. In bars, women approached me to tell me how hot my cast was. I reveled in it unapologetically — another of the defining differences between socially legitimate and illegitimate impairments is that illegitimate impairments are not usually considered sexy. But after only a few days, the exercise of "passing" began to ring as hollow for me as it did for Siebers. By the second week, I began using people's questions about the cast as a launchpad to bring up how interesting the experience of breaking a disabled limb was turning out to be. Of course, the person on the other end of the conversation was usually quite taken aback — this was not the discussion they'd signed up for when they asked me how I broke my arm. So I was back on familiar terrain — my disability was making people uncomfortable again. But I myself felt strangely comfortable drawing attention to my disability when I didn't need to, or "masquerading" it, as Siebers terms. Siebers (2004) writes that

The masquerade counteracts passing, claiming disability rather than concealing it. Exaggerating or performing difference, when that difference is a stigma, marks one as a target, but it also exposes and resists the prejudices of society. The masquerade fulfills a desire to tell a story about disability, often the very story society does not want to hear because it refuses to obey the ideology of able-bodiedness… [these stories] subvert existing social conventions, and they contribute to the solidarity of marginal groups by seizing control of stereotypes and resisting the pressure to embrace norms of behavior and appearance.

In a sense, the conversations about disability that I foist upon unsuspecting participants — as well as this paper itself — are ways I have of masquerading my disability when both the medical and social realms would prefer I conceal it. In the end it's the cast that is the cloak, the artifice. The arm (and body) underneath is mine.

Works Cited

  • Abberley, P. "The Concept of Oppression and the Development of a Social Theory of Disability." Disability, Handicap and Society 2(1) (1987): 5-19.
  • Driedger, D. The Last Civil Rights Movement: Disabled Peoples' International. New York: St. Martine Press, 1989.
  • Dutton, K. The Perfectible Body: The Western Ideal of Male Physical Development. New York: Continuum, 1995.
  • Gadacz, R. Re-thinking Disability: New Structures, Sew Relationships. Edmonton: University of Alberta Press, 1994.
  • Krause, C., ed. Between Myself and Them: Stories of Disability and Difference. Toronto: Second Story Press, 2005.
  • Kuppers, P. Disability and Contemporary Performance: Bodies on Edge. New York: Routledge, 2003.
  • Middleton, L. Disabled Children: Challenging Social Exclusion. Oxford, UK: Blackwell Publishing Ltd, 1999.
  • Oliver, M. The Politics of Disablement. Houndmills, UK: Macmillan, 1990.
  • Reeve, D. "Oppression Within the Counselling Room." Disability & Society, 15(4) (2000): 669-682.
  • Siebers, T. "Disability as Masquerade." Literature & Medicine, 23(1) (2004): 1-22.
  • Shapiro, J. No pity: People with Disabilities Forging a New Civil Rights' movement. New York: Random House, 1994.
  • Swain, J., Gillman, M., & French, S. Confronting Disabled Barriers: Towards making Organizations Accessible. Birmingham, UK: Venture Press, 1998.
  • Titchkosky, T. "Disability Studies: The Old and the New." Canadian Journal of Sociology, 25(2) (2000): 197-224.
  • Wilson, S. "To Be or Not to be Disabled: The Perception of Disability as Eternal Tansition." Psychodynamic Practice, 12(2) (2002): 177-191.
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Copyright (c) 2010 Isaac Stein



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