Dignity and the Disabled Body


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.

30 responses to “Dignity and the Disabled Body

  1. Okay, I know I have said this before, but this is REALLY your best post ever. You can’t imagine how universal these issues are! Thank you so much for this beautifully written piece.

  2. While reading this, I could really picture you as a little girl taking such care with your note and such pleasure in the classroom, organizing and spending time alongside your teacher. I think your piece beautifully speaks to the way our culture, despite our constant consumption of others’ pain, remains in complete denial about debilitating illness that can’t be out-willed, out-witted, or “overcome.” Appreciated this one, M. xo

    • Of course you – wonderful teacher that you are – you understand a love of school. I don’t know about you, but the people on whom I had the greatest crushes were always my teachers. :-)

  3. LOVE IT!

  4. Thanks, Michelle, for another thoughtful reading . . . of life on so many fronts. Hugs all around! Lucy

  5. Thanks so much for this, Michelle. I really needed to read it today. Kudos to you– and to Mrs. Diaz for moving all of us forward beyond our fears.

  6. This is a wonderful write. Thank you so much for putting into words what I have been unable to.

  7. Perfect examples of what real life is like for some of us. Wonderful read.

    • Karen and Nellie, I am so glad that this post resonates with you. It means a lot to me to hear that my posts connect with people with MS.

  8. You have expressed it perfectly. Thank you t I do wish I had Mrs. Diaz. Instead I had a nun who believed that 6 year olds could sit quiet and still all day doing our workbooks. And we never had PE in grade school. Instead the nuns walked around the parking lot used as a playyard and reminded everyone to keep moving. Ah well, but I guess I should just write about it.

    again thanks

    • I also wish you had been one of Ms. Diaz’s students. I’m not sure that I could have survived sitting still all day doing workbooks. I couldn’t even do that as an adult!

  9. Thanks for expressing so well a lot of what I think but struggle to put into words. You seem to have a direct link into my brain!

  10. Michelle, I feel so strongly that yet again, through your illness experience, you capture what so many of us are told to live and breathe: that we are responsible for everything that happens to us, and there is no such thing as luck or randomness or anything else but “hard work.” It’s a lie that is damaging to everyone, but vastly and more powerfully so for people with illnesses and disabilities. Thanks again, for expressing truth.

    • Isn’t it odd that we continue to insist that others are responsible for everything that happens to them even as our own experiences tell us that life is so very random?

  11. Thank you once again for sharing your heart and thoughts. You have expressed so much emotion and wisdom that, as other’s have already commented, speak for so many of us.

  12. I hope that I will be as wise as Mrs. Diaz when opportunities arise.

    • I know for a fact that you have spent your entire teaching career showing extraordinary wisdom and compassion to your students.

  13. Really lovely post–and a strong reading of the body in educational contexts. Although I can’t really relate to your current embodied experiences, I felt a strong connection with the experiences you describe as a young person in school. Thank you for sharing!

  14. Thanks for writing. I, too, had SSR :) I have been rereading old issues of _Academe_ and the new issue has a piece that references “heroic stamina,” which is what I think we’re supposed to have in response to both chronic and acute illnesses. We need more like Ms. Diaz.

    • Yes, we do need more like Ms. Diaz. I will have to look for those references in Academe. Thanks for the reference.

  15. Reading this brought to mind Sister Elizabeth in 6th grade who slapped me for crossing my legs in class. Back in those days the nuns were allowed to do that, and nobody said a word. Hurray for Ms. Diaz and every other teacher who respects the dignity of their students.

  16. It’s enormous that you are getting ideas from this piece of writing as well as from our argument made at this
    place.

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