Washington Post Review

Here’s a review from the Washington Post. It can be found at: http://www.washingtonpost.com/wp-srv/style/longterm/books/reviews/waisthighintheworld.htm.

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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

Magazine Review

Here’s a magazine review of Waist High in the World which you can find at: http://www.ragged-edge-mag.com/1198/d1198br.htm

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Way beyond Klara and Tiny Tim
________________________________________
Books that go beyond the personal into the political experience of disability are still harder to find than they ought to be…

Midlife crises might be fashionable, but, never a slave to fashion, I thought I had managed to avoid having one. I have a good marriage, four cats with no litterbox problems and work that I enjoy. I keep my cholesterol at a number both my doctor and I can live with, and although my family of origin isn't cut from the Ozzie and Harriet mold, we're not exactly dysfunctional enough for television talk shows. Home free, right? Well, not exactly. As a former librarian, disabled woman, and writer, I should have seen my own midlife crisis coming since it deals with books and disability.

Actually, it has been lurking for years and was formed, as I suppose all these midlife woes are, in my early years.

I hated fourth grade Friday afternoons when Mrs. Kline, as a "treat" for the hard work her little charges had done during the week, read aloud to us. (And, no, let's not jump to any Freudian conclusions: my hatred was not born out of some premonition that, blind in middle age, I would someday "hear" rather than "read," as most sighted people would put it, the printed words that danced across the pages of the books she held in her hands. No, my dislike was more immediate--even if at age nine I didn't know how to name it).

I hated her choice of books.

While my classmates sat either enthralled or bored with the adventures of Heidi and her insufferably sweet crippled friend Klara, I sat, wearing braces, heavy orthopedic saddle shoes, and glasses so heavy that they never stayed up on my nose as I stared at the floor in shame and silently entreated it to open beneath me so I could escape the sickening story and the real and imagined stares of my classmates.

Things didn't improve when Mrs. Kline finished Heidi and moved on to Dickens' A Christmas Carol. I wasn't a nascent activist, but my fondest wish would have been to wipe Tiny Tim off the face of the earth--or at least out of that second-floor classroom in a working-class town in the 1950s.

While I might not have been able to give voice to it in elementary school, I now know what the problem was. It's all a matter of prepositions. Prepositions? Yep. Those books, and the many others I am sure that I've managed to suppress, were about people with disabilities, not by us.

Of course who in the 1950s even knew there would someday be an "us"? Now with disability culture in full swing, there are memoirs, autobiographies and "war stories" from the front lines by those of us who live with disability and care enough to detail and celebrate it. Instead of being defined by others, we are defining ourselves.

In junior high, I had to read an autobiography and review it for my English class. The small town I grew up in didn't have a large library, but the little one it did have promoted books by local authors--which is how I came across To Catch An Angel by Robert Russell, a local English professor. Blinded at the age of six, Russell graduated from Oxford University before settling with his family in southeastern Pennsylvania. This autobiography by a fellow traveler was the first that I, a disabled teenager, had ever read. It was a revelation. Honest, lyrical, and for the early 1960s amazingly global in context, it remained the standard by which I later came to judge personal accounts of disability.

Although Russell's book is long out of print, I turn back to it every few years and find it as fresh and important as I did over thirty years ago.

So where's the midlife crisis? you ask. As someone who lives by and with words, I keep looking for books by people with disabilities that measure up. Now, in the 1990s, with crip culture on the rise, I keep thinking I'll have no problem finding autobiographies and memoirs that, while using the personal as the narrative basis, go beyond the personal, as Russell did so many years ago, into the political and the global experience of disability. But they're still harder to find than they ought to be.

Any good writing is born out of personal experience. As personal experiences go, disability in the American culture of the 1990s is ripe with possibilities.

Yet most of the books I have come across in my years of searching have simply fallen into the "inspirational" category. Others have been compelling and excellent accounts of living as a disabled person in America. But they have remained just that--personal accounts. They didn't go far enough.

Following a career change necessitated by vision loss, I found myself as a college instructor teaching disability awareness classes to occupational therapy students. While the students were receptive to any of the books I used as texts, they were never able to see beyond the personal accounts of disability to the growing civil rights movement that would affect the books' authors. The struggles, as they read them, were personal and, in my students' minds, they remained isolated incidents. The authors communicated well on a personal level. But their books did little to wake up a world that was (and is) in dire need of waking up.

Is it fair to expect disabled writers to use their craft for this purpose?

Disability is the most diverse minority group around. And out of diversity come many accounts, personal and unique. The world we inhabit has long kept those of us with disabilities isolated, silent and separated from the mainstream--and from each other. In a political climate that seeks to eliminate rights (and, if the likes of Kevorkian have their way, lives as well), perhaps we can no longer have the luxury of remaining isolated with our writing. "Perhaps," argues the disabled woman within me. The writer in my soul argues for artistic license. That's the problem with midlife crises: there are no easy answers.

Nevertheless I still haunt bookstores (and my past) looking for those answers. While I am always glad to see almost any book by a disabled writer on the bookstore shelf, I have to admit that I am more heartened to discover books by us that help shape and define our movement. In my middle-aged impatience I have to stop to remind myself that within my lifetime, those of us with disabilities more often than not were denied the chance to define ourselves through writing.

John Callahan would never have made Mrs. Kline's list. More's the pity, because this iconoclastic cartoonist who happens to be a quad could really shape (or warp) little minds into political activism. "Quirky" to his admirers and "sick" to his detractors, Callahan's humor is not for the faint of heart. But who of us living with a disability in this culture can afford to be faint of heart anyway? Certainly not Callahan himself--as he proves in his latest book, Will The Real John Callahan Please Stand Up?

Subtitled "a quasi memoir," this book, like its author, is hard to pin down. Just when you think there is nothing about Callahan's outrageously funny work that could possibly offend you, you turn the page and come across a cartoon slapping feminism, ethnic minorities or aspects of disability culture in the face. At times it takes a thick skin and agile mind to get beyond the obvious and see Callahan's swipes-at-sacred-cows for what they are--potshots at everyone and everything. No one could accuse him of political correctness. His genius (and irritation readers might feel with him) lies in his ability to see the absurdity in a situation: in Callahan's world, the emperor stands naked for all to see and judge. Judge the cartoonist, too, if you must. He could probably care less.

There is something less than satisfying about Will The Real John Callahan Please Stand Up? though. A collection of cartoons, word sketches, fan (and hate) mail and reminiscences, this book is somewhat jumbled, lacking the focus of his earlier autobiography, Don't Worry, He Won't Get Far On Foot, or his other collections of cartoons. Admittedly out to please himself and his friends rather than the public, Callahan in middle age seems to find life a little puzzling, as he draws with Rush Limbaugh's radio show in the background. There are twinges of bewilderment and bitterness in this work. Still, a new Callahan is better than no Callahan, and in this book there's enough (or too much, depending on one's taste) of the on-target, in-your-face disability humor that we have come to expect from one of our own to make it worth the purchase.

While Callahan uses life with a disability as fodder for humor, poet and playwright Kenny Fries uses his life experience as a disabled, gay Jew to evoke the memories he has carried with him, sifting through them to make sense of the pain, abuse, friendship and joy that have intermingled over the years. In his beautifully written and evocative memoir, Body, Remember, Fries writes, as the memoir format demands, of his own life--but anyone with a disability who reads it will recognize themselves as well in his words, no matter what their gender, sexual orientation, or ethnic heritage is.

Born with a congenital condition that left him with legs requiring many surgeries, Fries, whose disability has no specific name, often also found himself--his true self, that is--less than defined in society. Defined by others on the basis of his disability, gayness, and ethnic background, Fries, after years of working through abuse, familial strife, and relationship concerns, has now, in Body, Remember, defined himself. Having taken pride in his homosexuality and followed a quest to his Jewish roots on a trip to Israel, Fries appears to be comfortable wearing both of these cloaks that place him outside mainstream American culture.

His disability, not so surprisingly, has been more problematic for him. Accepting and even cherishing a body and self that have been devalued by society is always a work in progress, but Fries, in this loving and erotic memoir, depicts it as a work of art, will, and crip courage. In a recent interview in the disability press, Fries recounted how an administrator at the college at which he teaches asked him, politeness masking the demeaning quality of the question, whether he always intended to write about disability issues. For the author's sake, as well as for all of ours, I hope Fries never abandons the disabled self at the core of his writings. We need him and his words now more than ever.

Leonard Kriegel too seems concerned with the concept of courage. As the subtitle of his most recent book, Flying Solo: Redefining Manhood, Courage, and Loss suggests, Kriegel wants a new definition of disabled manhood, and in this collection of autobiographical essays and memories, Kriegel, who has written previous collections of essays about his polio, sets out to refine and redefine his life experience.

Unlike Callahan and Fries, this gifted stylist is past middle age; now, from the other side of sixty, he looks back at the experiences that have shaped his life. The polio that paralyzed him at eleven and continues to hassle him as he ages has, as he sees it, been the main source of the "loss" alluded to in the subtitle. Sustained by imagination and fantasy, it wasn't until an epiphany at the age of seventeen that he realized that he had lost, in addition to the ability to walk, the future self he had imagined.

Fueled by anger and sometimes rage, Kriegel went on to demand a place for himself in the world of the traditional manhood of his era: college student, teacher, writer, husband, and father. In Flying Solo, he reflects upon the losses he both ignored and acknowledged as he comes to terms with his crippled self.

Though central to this book, that self remains elusive, however. Maybe it's a generational thing with writers: Kriegel remains less well known to us than does the younger, more confessional Fries. A noted author, Kriegel might have worked out some personal demons through the writing of Flying Solo, but the book exhibits a curious sense of disconnectedness to individual disabled readers and to the disability community. A disabled British friend hit the proverbial nail on the head with her comment after reading Flying Solo: "I don't feel as if I know much about the man he was trying to redefine at all." Neither did her husband, a fellow polio survivor, who also came away from the book less than satisfied. A shame, because Kriegel's experience--and ours--deserves a full, revealing telling to the wide audience this well-respected literary figure is able to reach.

Nancy Mairs, like Kriegel, has written much based on her personal experience with disability. Like him, too, she commands a wide mainstream audience. Yet Mairs seems able to connect with her readers. In Waist-High In The World: A Life Among The Nondisabled, Mairs has given the disability community her best book yet.

Although I have always been a fan of Mairs' work, I have to agree with an activist friend who has always wished that this gifted author would connect more to the disability rights movement, believing that she had a large nondisabled readership who might be willing to hear the truth she spoke.

Nancy Mairs certainly speaks the truth about living as a disabled woman. Chronicling her progressive multiple sclerosis in previous books, Mairs has contemplated her life, her family, religion, politics, and other matters through collections of exquisitely conceived and crafted personal essays. Yet these essays never went beyond the personal where disability was concerned, said my friend.

I replied that each of us with disabilities approaches the topic with our past and our passions in tow. A college student and a married mother before the protest movements of the 1960s, Mairs (who later embraced the Catholic Worker movement) brought literate, social relevance to her very personal work, and I devoured all of it, as did many of my disabled friends: her experiences spoke to us.

But in Waist-High In The World, Mairs has combined her personal disability experience with the broader spectrum of social issues facing the disability community. Crip identity, employment, euthanasia, eugenics and the ADA backlash all get the full, careful scrutiny of which Mairs is capable. Against the familiar backdrop of the author's personal and family life, the welcome inclusion of these issues into Mairs' work makes Waist-High In The World one of the best examinations and celebrations of disability culture around. If there is any justice in either the disabled or literary worlds, this should be Mairs'most widely-read book.

Waist High probably wouldn't have made Mrs. Kline's reading list, either. But wherever she and my classmates are today, I hope they read it--or any of the other crip culture books that have been coming out recently. They might finally see that Klara and Tiny Tim have nothing to do with real crip life.

Sally Rosenthal frequently reviews books related to disability.

Todd's Review of Waist-High in the World

Here's Todd's review of Waist-High in The World: A Life Among the Nondisabled (Mairs, Nancy). Post comments to share your thoughts!

This is an autobiographical type of book. It is well written, engaging and a fairly quick read. This is not a feel good book but rather a feel real book.

The book is divided into two parts:

1. Home Truths
2. The Wider World

Nancy (the author) was diagnosed with MS after the age of 25 and George has cancer.

Her MS began with a bad ankle that made it difficult for her to walk. The cause of her MS is unknown, however it could be a genetic predisposition toward MS.

George was a caretaker for Nancy. Being in a wheelchair has given a different view of life rather then the perspectives you get standing up. She wants to be independent, yet it is very difficult for her.

Nancy is thrilled that she is able to write.

The Wider World:

It is hard for Nancy to get through certain doors with her wheelchair. She realizes that the world is not that accessible for disabled people.

It is hard for disabled people to get jobs.

Nancy writes, "what is critical is an understanding of the realities disability imposes, and the only way finally to develop the necessary empathy is through knowing disabled individuals. Most nondisabled people I know are so driven by their own fears of damage and death that they dread contact, let alone interaction, with anyone touched by affliction of any kind, as my mother-in-law demonstrated, not for the first time, just the other night." Page 100

Nancy has made suicide attempts but was almost successful.

Nancy feels that people should sit down when they want to talk to her. That way they could be at eye level.

Her interest in writing began in 7th or 8th Grade. Eventually, she wrote a novel about The West.

George and Nancy traveled to Africa and London together.

It is hard for Nancy to maneuver through the airport.

At first, when she gets to the Monk's house, there is no way for her to get in. She ends up getting in through the garden.

There is no sad ending for this book. We do not find out what happens to Nancy and George.

This book is a very worthwhile read! You will get a new perspective on how it feels to be disabled.