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Dignity and the Disabled Body

Posted Jul 19 2012 12:00pm

As I remember it, my first-grade classroom was a child’s paradise. There was a reading table stacked high with boxes of SRA readers and an assortment of children’s books. A rabbit lived in one corner next to an ant farm and a lizard. A math table was adorned with a colorful abacus and an assortment of other manipulables.  I loved the time I spent at the art table, which offered modeling clay and paint and the most astonishing mosaic tiles. And Mrs. Diaz knew how to let us use our days – a few minutes here and there in instruction and the kind of goal setting children can do – then just enough time at each table to leave us anxious to return the next day. The only thing that marred my early school days was the time I spent away from Mrs. Diaz—in the schoolyard and at the mercy of “Coach,” whose favorite pastime it seemed to me was torturing those children who lacked athletic prowess.

Eventually, my constant failures at running Coach’s laps, doing his pull-ups, and dodging balls in the brutal game he seemed to love so much were more than I could stand. I had seen my friends present Mrs. Diaz with notes excusing them from Phys. Ed. and I had been envious of the time they spent alone with her in the classroom. I knew, though, that my parents could never be convinced to write a note like that, so I set out to write my own. I cannot remember what illness I invented, but whatever it was I hoped it would be dramatic enough to buy me a week in the classroom and out of Coach’s control. When it was finally complete, I knew that my note was an extraordinary document, carefully written and finished off with what I believed to be a perfect forgery of my mother’s signature. I was sure that I had done what any adult would: I had written the note on a piece of my mother’s stationery and sealed it in a matching envelope with Mrs. Diaz’s name carefully penned on the front. My only disappointment was that I could not reveal to my beloved teacher that I was the one who had done such beautiful work.

The next thing I remember is a blissful week during which I spent recess working at tables, feeding and caring for the class animals, and organizing the supply drawer in Mrs. Diaz’s desk. Looking back, I imagine Mrs. Diaz struggling to hide her amusement when she saw that note, but she accepted it without revealing any doubts about its authenticity or concern about the exercise I would miss if I were excused from Phys. Ed. I was a round child, not exactly fat at that point, but not skinny and decidedly NOT athletic. I was the kind of uncoordinated kid who was always the last chosen for sport teams, and my lack of athleticism was a source of constant ridicule from both the adults and the other children in my life. The fact that Mrs. Diaz did not respond to my note by lecturing me about the importance of exercise and weight control was at that time a welcome anomaly to me.

Today, as my MS symptoms progress, I am reminded of the humiliation I felt as an uncoordinated child. In my adult life before MS, I prided myself on my independence and on my ability to make my way in the world with little material or physical assistance. I had outgrown my constant awareness of my body and the space it occupied. I felt independent and even at times somewhat graceful – and I loved that feeling. However, because MS has brought with it a growing dependence and gracelessness, I have lost much of the physical and emotional confidence I spent most of my adulthood working to develop; as a result, I have begun to isolate myself more and more. I am hesitant to attend social events at which I will be forced to navigate my chair through crowds of people I do not know; when I do go out I am inclined to apologize to everyone I see for the “extra” space I occupy.

The humiliation I feel about occupying more space than I did when I was able-bodied is eclipsed only by the humiliation I feel about my inability to “rise above” my disability, to “emerge victorious” over the disease. Before MS began gnawing away at my ability to function “normally” in the world, I was blissfully unaware that people with chronic illnesses are constantly inundated by the message that we should do “battle” with our diseases and spend every ounce of our waning energy resisting the physical and cognitive impairments they visit upon us. Media segments about chronic illness feature stories about disabled heroes who overcome the ravages of their disease to climb mountains, run marathons, or accomplish other extraordinary physical feats.  Celebrity physicians make sweeping claims about how  exercise and strict dietary or pharmaceutical regimens will transform our diseases into “manageable conditions.” What these claims ignore is that most chronic illnesses like MS take varying forms and that exercise, diet, and pharmaceutical regimens are “hit and miss” in terms of their success for any given individual. Nonetheless, media doctors’ overblown and inaccurate claims shape attitudes about the level of control we have over our symptoms, often leaving those of us whose progression continues unabated to wonder what we are “doing wrong.”

It may seem silly to endow one experience with so much significance, but I have thought a lot about Mrs. Diaz lately, about her willingness to accept that note and the child who wrote it. Though she clearly knew that I was perpetrating a deception she respected the fact that I was also expressing an honest need for a reprieve from physical challenges I was unable meet. I’m not yet able to articulate how my experience with Mrs. Diaz relates to my current struggle to make peace with a body that insists upon losing function, but I know it has something to do with dignity, with the quiet way we must come to accept our bodies and ourselves despite the myriad ways they fail us daily.

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