A brief essay discussing one aspect of Seven Wheelchairs appeared yesterday on Canadian disability activist Dave Hingsburger's Chewing the Fat blog.
My book (Seven Wheelchairs: A Life beyond Polio) was published this year, but I refuse to accept responsibility for current the state of publishing in this let's-call-it-what-it-is recession. The only responsibility I have, according to the publisher (The University of Iowa Press), is to toot my own horn. Why not? After all, who better to report on the world of disability than someone who has been a citizen for close to fifty years.
If you've been riding a wheelchair as long as I have, you realize attitudes toward disability have changed over the years. Even so, I still get the occasional "Oh, I could never live like that" comment, which implies I should be sitting in a corner somewhere crying.
How can a crip reply? I suppose "You never know till you try" is the only rational response.
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."
But here's another of those dirty little secrets: Writhing beneath the pleasant exterior facing the world, running like a stream of molten lava, is rage.
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.
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.