Thirty-three Books on
The Disability Experience
Writing on disability is like fine bone china: it demands an elegant delicacy. And a delicious sense of restraint.

Many disabled writers (or those who choose to write on our behalf) collapse into fake jollity, or bathos, or employ a style that is icy, dispossessed, separated from the heart. A worthy writer must show us the good as well as the ghastlies --- infections, aging, the unexamined hostility of society --- without getting maudlin, without descending into fake heroics, without the chill of unrelieved anger.

Good CripLit should show the restraint of Ernest Hemingway, the tenderness of Mary F. K. Fisher, the insight of Virginia Woolf, the descriptive magic of H. G. Wells, and the mordant wit of S. J. Perelman.

Most of the titles below do not turn up in reading lists for Disability Studies, whatever the hell that's supposed to be. More's the pity. For in these titles one can find the truth of our world: the reality of the body, the random 3 AM despair, the jolt of wisdom of the soul . . . along with occasional bursts of sheer joy-in-survival.

My Life with
Cerebral Palsy

Fran Macilvey
Macilvey is a hell of a good writer, and this, plus her good sense, manage to keep Trapped from getting trapped in the twin crevasses that haunt most agony-lit. One is self-pity, you can't imagine how much I've suffered but I am going to tell you anyway. The other is mushy sentimentality. We come early on to relish her clear and direct writing, her even-handed coolness.

Growing up disabled in a non-disabled world is no bed of roses, and most people around you --- even in your own family --- haven't a clue to the boobytraps waiting there on all sides to turn one into either Super-Crip --- heroic-beyond-all-means --- or on the other hand, an object of pity. Like most of us who are disabled, Macilvey had to plot her course alone, and alone she came up with many of the same tools the rest of us use to evade the pitfalls and tarpits.

And there are some lessons that few Walkies will experience, at least until they finally stick you in Happy Acres Nursing Home. In hospital, Fran learned the same sorry lesson so many of her peers learned: that in these places there are those who take care of us who are kindly, gentle; and there are some monsters. After a particular painful operation, she learned that "Endless petty cruelties were meted out to children at the mercy of a system that looked no further than the next procedure. And, though I met many angel nurses, I also encountered my share of sadistic bitches, one of whom --- she just happened to be the ward matron --- decided one day that it was 'time those stitches came out.'"

    She prepared with gleeful precision, pulling the curtain around my bed so that no one else could see how much she was going to enjoy this. ... Telling me to turn over on to my front, she stripped me and then pulled every stained piece of thread out one inch at a time. She scolded me as long spasms of pain convulsed my body and tears poured over my face. As instructed, I bit hard into the pillow while my bottom wept blood beneath her scissors. I sobbed and tried to stifle my screams and all the time, I knew: if it hurt so much it was too soon.

Any of us who stayed long term in a hospital or nursing home have run into these creeps. But I have to tell you they don't look like someone just over on the boat from Transylvania. They sport no fangs, wear no chains nor whips. They're just normal-looking people who have normal-looking faces and normal-seeming personalities. But once they get you in their power, their uncanny ability to humiliate beggars all description.

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Tumbling After
Pedaling Like Crazy
After Life Goes

Susan Parker
If you are interested in quadriplegics or chance accidents out of the blue or disability rights or the secret lessons the body has to teach us get this one and settle in with it.

Susan Parker writes like an old master, and she has a way with words that is as rich and funny and sad and lonely and mad as one could ask. She is a stylist who manages to strike the perfect balance between despair and wonder, the curse of fate and hilarity, stoicism and genuine soul-cracking honesty . . .

. . . So much so that when I got done (I did it in one day, not because I had to but because I wanted to) I felt like I should call her up just to be sure that everything was still OK with Ralph and Mrs. Scott the plump lady from down the street and Harka from Nepal who gets mugged on the streets of Oakland and goes into a funk for six months and last but not least Jerry the Personal Care Attendant, the black man with ghastly eating habits (cheeseburgers, Tasty Cakes, candy bars, popcorn), a funny man with a mysterious past who ends up --- have mercy! --- sleeping with Suzy.

They all came so alive for me that I wanted to check to see that what she calls her "makeshift family" is still going on, that she is still snuggling with Jerry, that she still cares for Ralph: picking him up after he falls and flossing his teeth and watching for bedsores and drying his eyes when he cries and taking him out from time to time and fighting with people who set them up with a party that's up ten stairs with no elevators and then when they are back home telling him about the fact that she is sleeping with Jerry and apologizing.

This is a woman who didn't volunteer for this job (she just wanted to go rock-climbing with her man) but one day found herself with someone who couldn't get it up anymore, hell, who couldn't get in or out of bed or even turn over by himself, much less get up to go to the bathroom alone. This is her new job and these are the new people who came along with the new job, people who live there in the low-rent district of North Oakland who become part of her new family, what the therapists would call "her support group."

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Hurricane Street
Ron Kovic
This Kovic is a shit-kicker. He was wounded in 1968 in Vietnam, and soon after he returned to the United States, instead of passively accepting his fate, chose to point out to the world that his injury came from being involved in an ugly war half-way across the world, declared to keep us free from the dominoes of communism (as they phrased it in those days). Yet he knew from personal experience that those who suffer equally in these wars were not only the soldiers, but the common folk, the men and women and children who care nothing about politics, just want to get on with their lives.

It was after his injury that Kovic first began his sit-ins, marching (in his wheelchair) with other activists, picketing political conventions, interrupting speeches of politicians, raising general hell - - - and finally writing in his very angry (and very good) first book:

"I am the living death,
a Memorial Day on wheels.
I am your Yankee Doodle Dandy,
your John Wayne come home,
your Fourth of July firecracker
exploding in the grave."
- - - Born on the Fourth of July

For many of us disabled, Kovic is a double hero. He served with distinction and honor in a dispicable war. And, once injured, he vigorously protested that his country would send what used to be called "the flower of youth" to be exposed to possible injury or death, and, at the same time, force them to learn one of the hardest lessons of war. That is, that it turns all involved in it bestial.

The best part of Hurricane Street is Kovic's story of the seventeen days with his pals camped out in Senator Cranston's office, there in a fancy Los Angeles high rise. The protesters not only do a sit-in, they fast, all the while, turning the Senator's conference room into a miniature VA hospital, with all the smells and appurtenances of a VA hospital - - - caths, bandages, swabs, support equipment.

And as the news got out, they fielded calls day and night from newspapers and radio and television stations, watching themselves on their small black-and-white television set, listening to their voices on radio.

He also tells of the strain of the evening meetings, the protesters often at odds with each other, complaining of the cramped conditions, the lack of the facilities to do their personal care, so vital for one who has neither feeling in nor protection for their atrophied limbs. Several of them rebelled, wanting just to get it done with, to abandon ship, but were often talked into staying by Kovic. He prided himself on being a cadgy, non-stop fighter, and a hell of a good leader of those who do not necessarily want to be led.

Sometimes they ended their evenings' meetings telling stories of their fighting and their agony, at one point reciting the date and place of their wounding, being "a day none of us can ever forget. . . . January 20, 1968, Cua Viet, Vietnam," I finally say, biting my lower lip.

We only learn the true extent of Kovic's disability half-way through Hurricane Street. He repeats for us a weird discussion that he had in 1969 with an official of the U.S. Department of Veterans Affairs:

    "Let me see," he said, looking down at his papers. "One hundred service-connected, totally disabled, complete loss of bowel and bladder functions, injured in combat, gunshot wound, paralysis, T-4 level.

"Is this correct," he asked, still staring down at his papers. "It's really quite simple," he went on.

    For instance, if a soldier or marine loses an arm or a leg in combat, they might get, if they're lucky, 30 to 40 percent disability, but in your case - - - that is, those of you who have lost everything: legs, bowel, bladder, sexual organs - - - you'll be receiving the maximum payment. Unlike the guys who lose fewer body parts - - - loss of a nose, an ear, a finger - - - that had to be decided on a case-by-case basis. I know a guy who got 10 percent disability payment for having his pinkie shot off; and a navy corpsman who lost his left ear while trying to save a marine - - - he get 20 percent, I think. It's crazy.

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Smart Ass Cripple's
Little Red Book

Mike Ervin
Ervin knows how to write simple declarative sentences that would be a credit to Strunk & White. And into this tale comes Eleanor Roosevelt. She's an "African American Girl in a wheelchair." She had "big swooping scoliosis" (curvature of the spine). She was "turned on" by his independence stick.

This is not the Eleanor Roosevelt that you or I remember. Whenever Ervin brings in one of these characters he offers a warning in caps: "SMART ASS CRIPPLE ALIAS ALERT! Once again we will use a pseudonym so as not to out the innocent."

    If it was to become known in the circles of the real "Eleanor Roosevelt" that she was once an inmate in a state cripple boarding school making out with the likes of me, it could do irreparable damage to her personal and professional reputation and maybe even ruin her credit rating.

As you can see, this is not the kind of writing for the faint-hearted, certainly not for those people on the boards of the national MS Foundation, the annual ALS Fund Drive, or the top brass of the Disabled Veterans Alliance.

This is the real thing, for Ervin plays the double bind ... that bind that almost everyone faces with the disabled. Take the title of this book. "Everyone loves a cripple," writes Ervin, "but everyone hates a smart ass."

    You'll want to love Smart Ass Cripple because I'm a cripple and it's un-American not to love a cripple. But you won't be able to love a smart ass cripple because I'm a smart ass and nobody likes a smart ass.

This book will resonate in a dozen different ways for those of us who over the years have lived more or less in the same world as Ervin. There are things that no "vert" can or will ever know.

For instance, there is our terror of being left somewhere, anywhere, without escape. A car stalled on the freeway. A room up the stairs with no exit nor telephone. Stuck in a locked bathroom stall. Such a situation could embarrass or irritate you ... but because you can get about on your own, I would doubt that it has the same impact on you as it does on us.

Like our being in some out-of-the-way place where no one knows you and doesn't know that you have nothing with which to escape: not even the ability to get your voice heard above the traffic --- all the common escape mechanisms that 99% of the world uses to get in and about (and out).

Ervin calls it "Dave Boffo's Existential Hell," named for his friend Danny Martin who once gave Boffo a ride home. "Martin lifted Boffo into the front seat of his car, folded his wheelchair, and tossed it in the back seat." But Martin had a craving for a Dunkin' Donut, stopped, bought one, got back in the car, and choked on the doughnut. "And he kept choking and Boffo freaked because he couldn't just jump up and give Martin the Heimlich or anything like that. Boffo couldn't even move his arms. So this is what went through Boffo's head as he watched Martin choke:"

    Oh great! This is just fucking great! So this is how it ends. Martin turns blue and falls over dead on my lap. And I can't even lift my fucking arms and this place is open 24 hours so nobody will even notice that a car has been parked here for weeks and no one will find us until they smell something funny and trace it back to this car and find us both decomposing!

"Listen here, God," he finally said, "if you insist on Martin dying by choking on a Dunkin' Donut, at least make him fall forward so he lands on the horn."

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Twitch and Shout
A Touretter's Tale
Lowell Handler
Imagine this. You are out in the world --- on the street, at a bar, on the bus, in the bank --- and you start barking, kicking against the seat, making funny faces, and blurting out words that no nice, polite person ever says in public. And it is totally uncontrollable.

Handler lived with this strange condition for years before he found out it wasn't all in his head. Or rather, it was in his head (too much dopamine). It's called "Tourette's Syndrome." It's genteel civilization's worst nightmare. "Coprolalia, or involuntary cursing, including racial expressions, occurs in about 15% of people with Tourette's," he tells us. One of his friends was in a line, in a bank, and,

    an attractive black man was standing in front of her wearing a purple sweater. Over and over she kept repeating to herself, purple nigger, purple nigger, until she actually said it out loud. She felt no racial prejudice toward this man but simply couldn't get out of her mind the one word she knew was most inappropriate to say...

Before he was diagnosed, Handler went from doctor to doctor, and finally, in despair, left his family and home, went to live in New Orleans. "The carnival atmosphere in New Orleans made anything seem possible," he says. It was there that he was able --- as much as possible --- to relax, begin the long process of accepting his strange way of moving and talking.

He went on to become a photographer, ultimately filming other brothers- and sisters-in-pain, including an MD, Orrin Palmer [see Fig. 1 below --- Palmer in the midst of a Tourette-induced face; note the reaction of the woman across the way.]

Handler ran across Jean-Claude Labbé, another Touretter, a French photographer who had spent some time in Vietnam. During an awards ceremony at Rockefeller Center, Jean-Claude and Handler sat together.

    As the room became quiet and Howard began to speak, the loud noises Jean-Claude and I made became increasingly noticeable. What was worst was that the more Jean Claude was Touretting, the more I made noises and twitched. This "copy-cat" Touretting is typical when groups of people with Tourette get together. We tend to set each other off on a relay of symptoms. The public relations man from Nikon said to Robert, "Your friends are making too much noise. They must be drunk or something, If they do not stop, we are going to have them removed..."

He goes on:

    The next day I dropped Jean-Claude off at Kennedy Airport for his return flight. We had lunch at a cafe while waiting for him to board the plane. Amid kicking and barking, the waitress said, "Are you two all right?"

    "We are high on crack!" Jean-Claude quickly responded.

    "No," I said, "We both have a neurological disorder."

    "I believe him," the waitress said, pointing to me.

Gutsy Imperfect
Maximizing Potential

Al Mann
(Al Mann Associates)
Mann developed Cerebral Palsy in the first moments of his life and, later, learned that he was gay. Now, almost fifty years old, he has put together this story of his life. There are many anecdotes --- some having to do with working for IBM for twenty-five years (he was one of their first computer programmers); some with having CP and being an alcoholic (and getting away with it: he could blame his blind staggers on the disease); some having to do with learning to love (himself and others); the most revealing having to do with his hideous depressions --- and the therapy that pulled him out of it.

This might be titled a manual for survival, for Mann wants very much to survive and, if not, to be sure he does himself in correctly. Like the computer man he is, he outlines the facts for us:

    Even when my depression was deepest, my logical mind set forth some rules about suicide. It had to work first time. (No halfway measures. I eat vegetables, I don't want to be one). It had to be painless. It had to be done so nobody else would be injured. It had to look like an accident...Did you know statistics prove a leap from the sixth floor of a building is fatal only 50% of the time? Facts like that were enough to depress me.

Like practically every other handicapped person in America, Mann developed strong tools of denial to survive the early years:

    I was my parents' pride and joy and I was a major pain in the ass. They never let me think of myself as anything but normal. This attitude certainly helped me get through many a tight spot. Neither they nor I had any way of realizing that CP carries with it emotional stresses which aren't always apparent. By acting as if nothing were different about me, we increased those stresses. The consequences of ignoring my emotions didn't show up for many years. Then they almost killed me.

This can be considered a manual for like-minded souls. There are sections on handling the deepest kinds of depression (live for the next moment only), how to choose a therapist, how to problem-solve, and the best - - - Mann's own solution for his depression, "psychosurgery . . . a Mark V, variable impedance, wide band sensitivity knob . . . permanently attached under my skin . . . . It is as big as a whisper and broad as an emotion."

The lllness Narratives
Suffering, Healing, and
The Human Condition

Arthur Kleinman
People suffering from long-term pain are a genuine pain to physicians because they mock what American Medicine is all about, namely, solving a medical problem. The chronically ill have the ability to cause their unflappable doctors to become very ill indeed.

Doing residency in New England, Kleinman ran a group therapy session for quadriplegic and paraplegic adolescents. At one session, the patients spoke of suicide as a legitimate potential way out of what for almost all were unacceptable present constraints and bleak prospects.

Uneasy at this turn, Kleinman stated that suicide was a cowardly way out, and

    I waxed eloquent about courage and hope, and I think I even said, much as I blush to think of it now, that with the passage of time they could come to accept their condition as something they would be able to live with.

All of a sudden, one of the youngest patients, a sixteen-year old who had fractured his lower spine in a diving accident and who had managed to alienate virtually all of the staff owing to his unremitting hostility, shouted at me:

    Fuck you, Dr. Kleinman! Fuck you! You don't have to live this way the rest of your life. What do you know about what it's like to be in our condition? How dare you tell us what to do. If you were like us, you'd want to die, to take your life, too.

What is fascinating about the good doctor is that rather than unplugging his hearing aid (the reaction of most doctors), he actually listened to the words, let them penetrate, and thought about it for awhile:

    I simply could not imagine what I would feel if I were at that tragic impasse. How is crippling disability made meaningful? The question reverberated in my experience, threatening what sense of meaning I had worked out to engage the chronically ill.

And where did he go for his solution? Again, showing an unusual openness, he went to Paddy Esposito, Joseph Conrad and Shakespeare. Paddy wasn't an author, nor a doctor. He was a patient in the hospital, and what Kleinman refers to as "a natural therapist." Paddy, himself dying of myocarditis, and --- as well --- a student of Buddhism, told him:

    If you were in his shoes, you would have had no difficulty responding to him. Those kids were too young and too spoiled. They hadn't come to understand things. Perhaps it's our culture. . . . We refuse to face the reality of suffering and death. We have powerful techniques but no wisdom. When the techniques fail, we are left shipwrecked.

Paddy then goes on to quote from Conrad's Lord Jim and Victory which told about ordinary individuals

    who were placed in situations where they were exposed to tests of personal courage . . . (but) they failed because of an inability to see through the superficial fears of competence and questions of self identify that beset all adolescents and young adults.

They were too absorbed with themselves and their own reaction to things. They failed the great test, and afterwards were so deeply ashamed of their cowardice that they ran away . . .

    That's the great test for each of us: to serve others and through that to better ourselves.

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Daring to Write
Mariana L. Ruybalid
(University Editions)
Those of us in the reviewing business usually skip over the vanity books, with their bad spelling, bad layout, bad design, and, usually, bad writing. This goes double for those firms that specialize in vanity works, like University Editions.

This is not to say that those who publish their own works have to be wretched writers: after all, Virginia Woolf and Walt Whitman --- to name two --- were responsible for their own works seeing the light of day. But when we get five to ten books a day (major newspapers get 300 - 500) it's easy, too easy, to overlook those that were paid for by the author.

Therefore it is a surprise, and a pleasant one, to run across something like Daring to Write. Marianna Ruybalid is disabled with cerebral palsy. Her poems can be touching --- as much as for what is said, as for what is not said:

    The table has four strong legs,
    blue and white checked oil cloth,
    and a bright yellow jar from Costa Rica.
    I eat breakfast sitting in the sun.
    Today I will buy some flowers.

    To table is to decide to deal later,
    not sweeping in under the rug, but later.
    Now I will go to College Avenue and
    buy red carnations for the yellow jar.

    I need to table my decision about suicide.
    While I pass thought this time of rage,
    perhaps even going down deep through despair,
    I put the decision and the yellow jar of red flowers on the table.

Ruybalid views her life (and her disability) with complete honesty; her vision of her self, her body, and her life (and her wish to be out of it) is unflinching; her poems have the understatement that makes one want to read more:

    "You're hopeless, you can do nothing. Stop
    the pain by killing yourself! Stop the curse!
    Stop men touching you there! Stop the
    violation of your mind and body! Cut your
    wrists! Die!"...

And then,

    But razors tell me to take ten valium
    To get even for people leaving me.
    I take ten so I won't vomit them up . . .

We would hope that Ms. Ruybalid would work to make her poetry a bit more . . . well, poetic. That is, not to use end-stops thrown in there willy-nilly; to develop more natural breaks; to work on structure. We would also hope that she would be able to follow such strong lines as

    I am trapped and alone.
    My hands clench. I drool . . .

with ones that almost come to be parody, e.g.,

    . . . I want white wine's gentle doom.
    Fly zoom, to the moon.

In all, her writing is terse, vigorous, and well worth it.

An Ocean to Cross
Daring the Atlantic
Claiming a New Life

<Liz Fordred
(McGraw Hill)
A quarter-century ago, Liz Fordred, a passionate horseback rider, was thrown during a workout. Like Christopher Reeve, she struck her head and ended up a paraplegic with only the use of her arms, shoulders, and upper torso. She was eighteen at the time.

Shortly afterwards, she met another quadriplegic, Pete, who was to become her husband. Together, they decided to build a sailboat and travel across the Atlantic. It took them four years to build their boat. They embarked from South Africa, sailed west, and arrived sixteen months later, after many adventures, in Fort Lauderdale, Florida --- where they live to this day.

To most, it's a heart-warming story. (Kirkus called it "highly inspiring.") Two people in wheelchairs, with little financial resources, and no sailing experience, constructing a completely wheelchair-friendly ferroconcrete sailboat and --- with perseverance and a can-do attitude --- getting across the Atlantic on their own. As Liz says,

    Life is about how you respond to not only the challenges you've been dealt but the challenges you seek . . . To my way of thinking, success is measured not by the position you have reached in life but by the obstacles you've had to climb to reach that position. If you have no goals, no mountains to climb, your soul dies.

However, for those of us who have been in the crip business as long as they have, An Ocean to Cross will offer a slightly different perspective. For instance, we read descriptions of them huddling in the afterdeck --- wet, cold, sleepless --- in a hideous three-day storm off the Bahamas; or of the constant battles with seasickness (both were sick during much of the sixteen month journey); or of sleepless nights when the waves made the journey down into the lower deck to cook or eat an impossibility; or the difficulty of getting from the boat into their life raft, from that onto shore, from that into their wheelchairs --- or Liz's chore of getting herself to the "loo,"

    I worked up a sweat getting my pants down. Then I couldn't get up onto the seat! No way was I going to call for help again, this time while lying bare-bottom on the floor. Instead, I got the bedpan out of the cupboard. By the time I'd used it, emptied it, pumped out the toilet, and worked my pants back up, nausea assailed me. I retched into the toilet and pumped it some more. . . . The worst part was knowing I'd have to repeat it in two hours or so . . .

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Still Me
Christopher Reeve
(Random House)
I picked up his Still Me prepared, as we crips often do, to sneer. I ended up in love with the man. Some readers may deplore his name-dropping (Clinton, Kennedy, Hepburn et al) but the sheer glory of the Before gives an agonizing force to the After. Before he was right up there with the stars. After ... well, he's down here with you and me, sometimes hopeful, sometimes happy, sometimes blue, sometimes infuriated, sometimes suicidal. "When two people have to roll you back and forth in order to put on your underpants at age forty-five," he writes, "it's a difficult lesson in patience and acceptance." And the bowel program?

    Often I listen to music or watch TV so I don't have to think about being taken care of like a baby.

And always there's the spectre, the big one, you remember it? the one known as regret:

    I came away sobered by the comments of the chief radiologist. He showed me that the damage to my spinal cord was only one centimeter wide, and said that if I had landed with my head twisted only a fraction further to the left, I would have been killed instantly. If I had landed with my head slightly more to the right, I probably would have sustained a bruise and been up on my feet within a few weeks. I just happened to hit the rail at an angle that turned me into a C2 vent-dependent quadriplegic.

"The irony of it, hit me very hard," he says, "although I kept my emotions to myself."

    I knew there was no point dwelling on it.

He writes that. He has to say it, doesn't he? --- for once upon a time he was Superman. That's something a Superman would say.

But then Clark Kent appears and we know it's impossible to be so stoic, especially when you are where Reeve is: "a C2 vent-dependent quadriplegic." It's hard not to come back to the memory of that day again, and again (and again):

    I was told by so many "experts" --- doctors, psychologists, other patients, and well-meaning friends and family members --- that as time went by not only would I become more stable physically but I would become well-adjusted psychologically to my condition. I have found exactly the opposite to be true. The longer you sit in the wheelchair, the more the body breaks down and the harder you have to fight against it. Psychologically, I feel I have established a workable baseline: I have my down days, but I haven't been incapacitated by them. This doesn't mean, though, that I accept paralysis, or that I am at peace with it.

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Bodies and British

Paul Youngquist
When Youngquist is running in the clear, his imagination and his leaps of ideas are breathtaking. For instance, Thomas Malthus, the first to write about what we now call "the population bomb," opined that the "body incarnates a fatal tension between eating and intercourse, arithmetic and geometry." Or that "war is a wound machine." Or that Thomas De Quincey, with his Confessions of an English Opium Eater, made hunger his theme, as surely as Knut Hamsen :

    This gnawing hunger bespeaks neither simple physical privation nor existential malaise but a mode of agency that evaluates life by incorporation. It is in this sense that De Quincey will later declare that "not the opium-eater, but the opium, is the true hero of the tale ... Opium affirms life materially, corporally, and hence has a "marvelous agency." Opium eating does not so much satisfy hunger as revalue it, put it to work.

By contrast, the poet Samuel Taylor Coleridge treated his addiction to opium as a moral dilemma, creating "the psychodrama of remorse, recovery and relapse." His very public denunciation of his weakness against "this detested poison," his determination to submit himself to the care of a physician to kick the habit, made him, according to Younquist, "the first celebrity to enter rehab."

Then there is the matter of George Gordon, Lord Byron, and his famous clubfoot --- which may not have been that at all (some doctors later opined that it was "mild spastic paraplegia or spina bifida.") Youngquist describes Byron's specially designed boots, says that they demonstrated that prosthesis "opens a body to otherness:"

    Perhaps the poet of the satanic school practiced not a demonic but a prosthetic art. Perhaps his scandalous reputation arises as much from physical as from psychological tribulation ... perhaps Byron's surgical boots materially occasion transgression, one that challenges the sameness that the proper body promotes.

Thus his physical deformity induced what the people of his time would see as a political deformity. To bring home his point, Youngquist indulges in heavy (and often wonderful) punning: "Birth got Byron off on the wrong foot." Byron required "fake boots to maintain his social standing." He stepped "toward another way of living, a way that involved otherness." "But that conclusion might be a misstep."

    Whatever the case, that boot alters Byron's stance toward others, or better yet, others it altogether, forcing him to step beyond the norm of the proper body, making prosthesis a part of bodily life.

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Body, Remember
Kenny Fries
He has all the qualifications. He was born with legs twisted such that the doctors assumed that he was a thalidomide baby (his parents denied it). The medical terms used back then were valgus (knock-kneed) and equinus (horse-hoofs).

He underwent a series of operations to straighten his legs and align his feet, so he would be able to walk. One of his memories, from high school, is walking past a boy, every day, in Brooklyn. And the boy would ask, every day, "Why are your legs the way they are?" And Kenny would answer, every day, "I was born that way."

And now here he is, years later, in the Yad Vashem in Jerusalem, the museum dedicated to the Holocaust. He encounters some schoolboys, "each with a blue woven yarmulke on his head."

    One elbows another, wanting his schoolmate to notice me.

Fries turns to consider a photograph on the wall, convinced that the boys are staring at him. Because of his condition and the many operations, he stands but five feet tall:

    I imagine the schoolboys are still watching me with expressions not unlike those of the German children who, in the photo, watch Nazi-uniformed men publicly humiliate an elderly rabbi.
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  • Don't Worry, He Won't Get Far on Foot, John Callahan (Vintage Books, 1990). This one should be at the top of all the lists. The reason: Callahan is a kick-in-the-pants - - - feisty, cynical, smart. Years ago, he did cartoons for a Portland weekly, entitled "The Lighter Side of Being Paralyzed for Life." Like all funny crips, his writings and cartoons are peppered with the truth of living with a dysfunctional body 24 hours a day. Our bodies don't go away and a writer has to interleave humor with honest grief in what is, after all, our accelerated knowledge of the human condition. My favorite quote: I felt as if a huge hand had reached down out of the heavens and placed me firmly on my butt in a wheelchair while a voice said, "Just sit there and relax for fifty years. Don't get up, ever." The only chance of relief from grief, from anger and from resentment I had was spiritual.

  • The Body Silent, Robert Murphy (Henry Holt, 1987). Murphy was head of the Anthropology Department at Columbia University when he developed a spinal tumor. Here we have a scientist looking at a brand new world he has been handed along with his drastically changed body. This on rage: "Quadriplegics cannot stalk off in high (or low) dudgeon, nor can they even use body language . . . They cannot show fear, sorrow, depression, sexuality, or anger, for this disturbs the able-bodied. The unsound of limb are permitted only to laugh."

  • FDR's Splendid Deception, Hugh Gallagher (Vandamere Press, 1994). Long after FDR died, people viewed him as a "recovered" cripple. The schemes used by him and his associates to disguise the true state of affairs (he was a polio paraplegic) were subtle but effective - - - and the public bought into it. Gallagher claims we all paid a price for his pretense, for Roosevelt's last days were spent in deep melancholia which affected the way he ran the country and the decisions he made at the end of WWII.

  • The Diving Bell and the Butterfly, Jean-Dominique Bauby (Knopf, 1997). One day Bauby woke up in a hospital with locked-in syndrome, due to which, according to the Merck Manual, "because of motor paralysis in all parts of the body [one] cannot communicate except possibly by coded eye movements." That's how he wrote this book - - - by blinking his one working eye. "My condition is monstrous, iniquitous, revolting, horrible," he writes. Bauby died several years ago, but this is a worthy gift he left us.

  • Rescuing Jeffrey, Richard Galli (Algonquin Books of Chapel Hill, 2000). At age 17, Jeff Galli jumped into a friend's swimming pool and broke his spine. His father, an experienced journalist and attorney, asked the doctors to remove his life support. Galli has created a spectacular piece of writing, a cliff-hanging mystery - - - one in which we think a murder may be going to happen. Living as a quadriplegic can be a pisser, right? And yet, to kill the kid without his knowledge or permission? It is this rank honesty that sets "Rescuing Jeffrey" apart from most books on disability's effect on the family.

  • Moving Violations, John Hockenberry (Hyperion, 1995). It's Hockenberry's sometimes angry, always articulate, mostly insightful writing that transforms a specific and personal event into the experience of all of us. "My body had become a puzzle. Solving it was exhilarating beyond the simple imperatives of survival." He claims to have escaped anger, but his description of tearing apart a New York taxi (the driver wouldn't fold up his wheelchair) implies otherwise. The writing at times rises to high comedy, especially memories of his early days in the hospital.

  • The Boy and The Dog Are Sleeping, Nasdijj (Ballantine, 2003). Does a book on AIDS belong in this list? Well, AIDS is a degenerative disease operating in overdrive. Nasdijj, a 50-year-old writer, adopts the dying boy Awee, learns to laugh with him, and clean up his shit and vomit, time and time again, and again with such pain, watch him wasting away. This is not only a primer on AIDS, and what the treatment does to destroy the body while saving the body - - - but the mad-making world of the medical professionals, especially those who are supposed to deal with the poor, who cannot and will not properly care for those who are at high risk. Sometimes the text is so painful that one must lay it down for awhile, just to give the heart and soul a rest.

  • Learning To Fall, Philip Simmons (Bantam). Philip Simmons was diagnosed with Lou Gehrig's disease when he was 35 years old. He works hard to find hope in his situation so the book turns into a spiritual treatise, riding on the dual questions: Why would God create such a trauma? And, how can one man deal with such a trauma without going under? For some of us, Learning to Fall has an unfortunate premise - - - that God sends down bad things to teach us to be good. Despite this Old Testament view, the writing is superb.

  • My Second Twenty Years, Richard P. Brickner (Basic Books, 1976). This one came out over 25 years ago and was featured on the front page of the "New York Times Book Review." Brickner was one of the first to write about living with disability day in and day out. The book includes a list of ladies he has bedded (which can get tedious) with a studied literary style (which can get tedious). The writing is rich in detail, but there is a strange undercurrent: a proud man's distaste for women, distaste for the lower classes; even a distaste for others with disabilities.

  • Born on the 4th of July, Ron Kovic (McGraw Hill, 1976). This one appeared the same year as Brickner's autobiography, but the difference between the two is epic. In Kovic's book, rage is transformed into a searing view of his world, complete with stories of his political activism. There is no relief in this steaming brew: not even a bitter humor-in-loss. He writes, "No one wants too many people to know how much of him has really died in the [Vietnam] war."

  • A Whole New Life, Reynolds Price (Plume, 1994). This author is a darling of the New York Literary Smart Set, so some nondisabled readers may see this as the defining story of disability. Unfortunately, A Whole New Life is hack-work at its worst. When the infiltrating tumor of his spine took hold in 1984, Price reported that he was not able to find any books to help him figure out the course of his new life. In one brief paragraph, he thus kissed off Ron Kovic, Patrick Segal, Richard Brickner, Jonathan Nasaw - - - not to mention Margaret White, Helen Keller, and even Shakespeare's astonishing Richard III.

  • Under the Eye of the Clock, Christopher Nolan (St. Martins 1988). Nolan was born with cerebral palsy. His writing is poetic, wry, and gentle. He tells, for example, how at age three he realized that he was different from others: "He showed [his mother] his arms, his legs, his useless body. Beckoning his tears he shook his head. Looking at his mother he blamed her, he damned her, he mouthed his cantankerous why, why, why me?" Nolan likes poetic inversions - - - sounding, at times, like James Joyce or Dylan Thomas - - - but all the while, his words are fresh and alive.

  • Falling into Life, Leonard Kriegel (North Point Press, 1991). "And I can't take it, yet I do take it," is his favorite quote, taken from Saul Bellow. Kriegel speaks of "the cripple [his words] who validates his life by creating a sense of selfhood out of physical pain." The general tone of this book is one of self-loathing and fatigue, but it is of historical interest since he was one of the first to write about disability using an intellectual literary style.

  • Broken Vessels, Andre Dubus (David R. Godine 1991). Autobiographical stories from an ex-Marine and prize-winning author, including the story of the automobile accident that cost him his legs. Dubus was a faithful Catholic, and the book is filled with sin and redemption, sin and redemption. He says that in his life, there is no sadness, only bitterness (he told Susan Stamberg, "I stay angry a lot.") Dubus and Kriegel are members of what we might think of as the Tough Guy school of disability writing.

  • Plaintext, Nancy Mairs (U. of Arizona Press, 1986). Mairs has written extensively about living with MS. She was one of the first disabled feminists, and no lightweight feminist either. She believes, for example, that the prejudices and pressures and demands of a male-dominated society have created her depressive attacks. She, like Kriegel, has an aversion to what her body has become: "Because I hate being crippled, I sometimes hate myself for being a cripple. Over the years, I have come to expect - - - even accept - - - attacks of violent self-loathing."

  • Happy Old Year, Marcelo Rubens Paiva, David George, translator (Latin American Literary Review, 1991). Marcelo is so full of life and love and heat and passion and being a kid that it becomes quite infectious. Before his diving accident at age 20, he was head of a music group called "The Turds." He regales us with tales of the terrible political world of Brazil and then, a moment later, delights in being able to sit up for the first time in the hospital (he then passes out). He rails, as many of us have, at the lacks of modern medicine: "You mean that science hasn't come up with some goddamn injection to take care of my problem. No operation, nothing? So it's just me and my body? I can't handle this, I'm not mature enough to face this by myself . . . Please, don't leave me alone."

  • Missing Pieces, Irving Zola (Temple, 1983). Zola originated the idea that disability is a socially constructed concept. "The very vocabulary we use to describe ourselves," he writes, "is borrowed from that society. We are de-formed, dis-eased, dis-abled, dis-ordered, ab-normal, and, most telling of all, called an in-valid." As a social scientist, he went to acquaint himself with Het Dorp, a village in the Netherlands designed to promote "the optimum happiness" of those with severe physical disabilities. Through the author's growing awareness, what began as a sociological study became a socio-autobiography.

  • The Unexpected Minority, John Gliedman and William Roth (Harcourt Brace, 1980). "Of all America's oppressed groups, only the handicapped have been so fully disenfranchised in the name of health," write the authors. Unexpected Minority looks at disability in terms of freedom, politics and history, and it goes back to Plato, through the Christian concepts of sin, and even examines footbinding in China.

  • Still Here: Embracing Aging, Changing, and Dying, Ram Dass (Riverhead, 2000). Ram Dass - - - of Be Here Now fame - - - had a stroke, survived, and is now in a wheelchair. "I've grown to love my wheelchair (I call it my swan boat) and being wheeled about by people who care," he tells us. He also says he "loves suffering." These remarks may irritate many of us, but because of Dass' great popularity, this book will be as influential as any on this list.

  • Rehabilitating America, by Frank Bowe (Harper & Row, 1981). I am usually bored to death with books about the politics of disability, but Barry Corbet said that if I didn't include Rehabilitating America in this list, "the activists among us will feel jilted" (and, presumably, he and his friends will start picketing me and chaining their wheelchairs to my bathroom door). He's right and I did.

  • Home Bound: Growing Up with a Disability in America by Cass Irvin (Temple University, 2004). Cass has learned a lot about people and, more importantly, about herself. Unlike so much of disability literature, she is emotionally honest from the get-go. Her book shows us how Cass has learned to retain her sense of dignity and self worth in the wake of abuse after abuse, abandonment and humiliation, social oppression and indifference.
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