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WAIST HIGH IN THE WORLD: A Life Among the Nondisabled
By Nancy Mairs
Beacon. 212 pp. $20

Go to the first chapter of "Waist High in the World"

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Wounding With Pity and Fear

By Marian Sandmaier

Sunday, February 2, 1997; Page X04

If Nancy Mairs were a less truthful writer, this book about life from her wheelchair-bound vantage point would be a jauntily spruced-up version of reality, long on accounts of pluck and grit and short on episodes of disability's griefs and terrors. She would have ample reason to pull a few punches, since one explicit intention of "Waist High in the World" is to demonstrate that a disabled person's life can be every bit as complexly joyful as that of any "normal." But Mairs has no patience for easy uplift. She is in pursuit of something far more troubling and urgent -- the ways in which the most robust spirit of a disabled person can be shriveled by the ungovernable, destructive fears of nondisabled people.

Mairs, who has previously written with immediacy and wit on such topics as marriage, faith, and female creativity, has struggled for more than two decades with a particularly severe form of multiple sclerosis. The facts of her daily life are not pretty: She can no longer dress herself or go to the toilet without help and is often exhausted by the effort required to merely hold up her head. Once an avid hiker, cyclist and camper, the 53-year-old Mairs now lives her life sitting down, in permanent physical stasis. Or in her words: "Here I a.m. . . . hunched and twisted and powerless but for two twelve-volt batteries beneath my ass. Woe is me!"

Except that most of the time, woe is not her, as she makes clear throughout this absorbing, laceratingly honest book. She is a self-pity refusnik, choosing to focus on the formidable daily challenges she masters -- taking a shower unassisted, for example -- rather than on her limitations. More important, Mairs's involuntarily slowed-down pace has allowed her to concentrate on the present and thereby fully cherish each moment, something she rarely managed in her first three, fully mobile decades. "I feel emotionally far more 'up' than I generally did when I stood on two sound legs," she writes. "For the most part, and you can believe this or not as you choose -- I consider my life unusually privileged."

Privileged but nonetheless spiked with anguish. There are moments when Mairs bitterly longs for her old, effortlessly autonomous body, most frequently when she is outdoors and spies an intriguing bit of nature -- an unfamiliar wildflower, perhaps -- that she wants to gaze at more closely than is possible from her wheelchair. "I can no longer move on, and sometimes I think I will die of grief at the loss."

But in her mourning, at least, she experiences her humanity. What truly debilitates her spirit, she tells us, is a society that persists in defining her solely in terms of what she cannot do -- thus assaulting her very sense of self. In defense, she calls herself a "cripple," a term she believes accurately defines her physical status, rather than "disabled," a term that reflects society's assumption of her inferiority to "able" individuals. This social construction of disability, which holds so tenaciously to the notion that a person with a physical limitation necessarily lives a stunted and hence intolerable existence, is what Mairs most wants us to "get" in this passionate, penetrating book -- and then to get over.

For the mythology that renders disabled people useless and despairing engenders such terror of disability in "normals" that we push people with impairments from the center of our communities, workplaces and personal lives, lest they remind us that in an instant of bad luck, we, too, could become one of their piteous number. The consequences, Mairs shows, are cruelly ironic: Out of our own ignorant terror, we actually create a large portion of the grief that disabled people do experience -- the grief of isolation, of invisibility, of fractured identity.

Embracing the humanity of people with impairments, Mairs points out, is not merely an item on a liberal agenda; it is also a matter of the purest self-interest. She rightly notes that, due to increasingly sophisticated medical technology, more of us will live long enough to experience a substantial whittling away of our physical capacities -- and with it, induction into a newly hostile culture. If we continue to regard disabled people as "them," we will do so at our own peril.

Yet the profound dread of disability that fuels the hostility and dehumanization that Mairs documents cannot be wiped away by mere force of will. This thoughtful, tough-minded book would have been strengthened further by an exploration of how each of us can begin to confront our own private horror of physical limits and loss. Any of us can talk a good game about accepting "difference." But until we face and do battle with our own personal, subterranean terror of bodily vulnerability, we are apt to go on much as before -- averting our eyes and toughening our hearts.

Marian Sandmaier's most recent book is "Original Kin: The Search for Connection Among Adult Sisters and Brothers."

© Copyright 1997 The Washington Post Company

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