23 February 2009

Seven Wheelchairs: A Life beyond Polio

Who better to report on the world of disability than someone who has been a citizen for close to fifty years?

My book (Seven Wheelchairs: A Life beyond Polio) was published this year. Writing it reminded me of a life lesson any one alive should learn early: Life is a grand thing, and it's all we know this side of Infinity, and all of us should be prepared to squeeze it dry. How? Seven Wheelchairs offers the opinion that we should greet each day with curiosity, with optimism, with passion, and then head out to release a little good karma in the world.

If you've been riding a wheelchair as long as I have, you realize attitudes toward disability have changed over the years, but we still get the occasional "Oh, I could never live like that" comment. The implication is that we should skulk off to a corner and cry.

I was reminded of another aspect of this victim attitude a few days ago when I was interviewed by the host of a syndicated radio show. It seemed to me that he constantly wanted to bring the conversation back to the issue of anger. When I returned home, I looked up the passage in the book that had sparked his interest. It relates to my perception of the transaction between me and attendants I've had over the years.
"And so I have always been openly grateful to everyone who assists me in accomplishing that which my body cannot do for me. "You're so polite," more than one attendant has said. At first, I was polite, biting down and swallowing anger, because it was in the power of the caregiver to neglect me. And neglecting me would kill me.

"Now I believe I am polite and grateful because I better understand the nature of the transaction. Such weak terms – politeness and gratitude – for what I strive to express, which is a potent cocktail of reciprocal love, embarrassment, guilt, gratitude, resentment, appreciation, anger, and bemusement, all blended to please the palate and poured out as a pretty peace-offering, something to swallow so that we each understand you feel both good and bad about helping me, and I feel bad and good about needing help."

I suppose we all rage, including also those who presently journey through the world not yet disabled, saints excepted. But I didn't begin the book to vent. I wanted to illustrate the reality of disability, but to do that, I wanted to write so that people with disabilities would be seen as ... well, real, for lack of a better word. We human creatures are a gloriously messy mixture of good and bad, strong and weak, happy and sad. The reverse of that coin is that no one with a disability should be assigned to play the role of "inspiration" or a "hero."

And from the feedback I'm receiving, I'm pleased that many readers have seen me as a whole person, one in whom disability is present but not dominant, And one who realizes anger, like disability, can define character but is wise enough to understand that there are other psychological, intellectual, and emotional elements that also shape character.

By Gary Presley

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