Cover image for A matter of dignity : changing the lives of the disabled
A matter of dignity : changing the lives of the disabled
Potok, Andrew.
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Publication Information:
New York : Bantam Books, 2002.
Physical Description:
305 pages ; 25 cm
General Note:
Dogs: Pete Lang, guide dog school manager of instruction and training -- Rights: Mary Lou Breslin and Chai Feldblum, teachers, activists, social-policy thinkers -- Bodies: Dave Loney, prosthetist; John Fago, photographer, teacher, prosthetist -- Jaws: Ted Henter, computer engineer and entrepreneur -- Scholars: Adrienne Asch, professor of bioethics; Rosemarie Garland Thomson, professor of English; Paul K. Longmore, professor of history -- Internal music: Connie Tomaino, music therapist -- Internal music: Connie Tomaino, music therapist -- Neighbors: David Werner, biologist, health educator -- Brothers and sons: Jay Neugeboren, writer; Mona Wasow and Ann Larkin, teachers; Sam Tsemberis, agency head.
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HV1552.3 .P68 2002 Adult Non-Fiction Open Shelf

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FromA Matter of Dignity: I realized that I needed to learn about the legislative and legal aspects of disability as much as I did about our feelings regarding wholeness, beauty and ugliness, about the state called normalcy, about liberating technologies and therapies, about the role of the disabled in history and literature. And what could better inform and enlighten me than contact with people who help create access, who elicit change via care, support, teaching, and study as their life's work? As it turned out, I have learned from them that, in spite of the American addiction to youthfulness, "normalcy," virility, activity, and physical beauty, diversity in all its forms provides not only fascination but strength. Diversity tends toward higher forms, uniformity toward dullness and extinction. What could make more sense than to value all that is diverse, unexpected, and exuberantly impure? From the Hardcover edition.

Author Notes

Andrew Potok is a painter and writer whose two previous books are a memoir, "Ordinary Daylight", and a novel, "My Life with Goya". He lives in Vermont.

(Bowker Author Biography)

Reviews 1

Publisher's Weekly Review

Insight and nuance underlie much of this investigation into the situation of disabled Americans today. Potok (Ordinary Daylight), who has the degenerative eye disease retinitis pigmentosa, shapes his informative and wittily written survey around a series of 13 interview/profiles of disability activists of various backgrounds and interests: e.g., lawyer Chai Feldblum, who pioneered AIDS and race-based civil rights legislation and now does disability law; Connie Tomaino, who works for Oliver Sacks and studies "neurological aspects of music"; Dave Loney, who makes prostheses. While careful not to present a completely cheery portrait of the world of the disabled, offering the history of eugenics in U.S. thought and law, and accounts of guide dogs who can "smell, shed, get ill, [or] revert to deeply ingrained beastly behavior," Potok discusses such positive developments as the new academic Society for Disability Studies, the ever evolving politics of the Americans with Disability Act, and the invention of the "talking computer" program JAWS (Job Accessibility with Speech). Covering medical, legal and psychological issues in depth and with intellectual vigor, the most provocative of Potok's work is his examination "about our feelings regarding wholeness, beauty, and ugliness [and] about the state called normalcy," making the book less about changing the world of the disabled than about in re-imagining the world in which we all live. (Feb. 4) Forecast: Potok's broad-spectrum, people-based approach works terrifically to draw readers into the issues, and can be recommended especially to those who have endured any sort of recent health or life setback. Anyone interested in the intersection of law and activism will find points of interest. (c) Copyright PWxyz, LLC. All rights reserved



DOGS On a sunny day in early spring, Loie and I climb into one of the Seeing Eye's vans for the ten-minute drive from the elegant spread of the guide dog school to the center of Morristown. The Seeing Eye's main residence, its offices and kennels, are situated in the rolling hills outside of town, but the real action happens in the streets of Morristown, a city of nineteen thousand, nestled in a hilly, horsey part of New Jersey. Though I have trained here with three different dogs, the third of them, Tobias, now at my side, I have come this time to rediscover the place from a nonstudent point of view, and, most particularly, to talk at length with Pete Lang, who has been with the Seeing Eye for thirty-five years, the last ten as training manager. The town, as always, is pulsating with activity, the traffic heavy, the nearly half-million residents of surrounding Morris County driving in to work. Upscale clothing, coffee and chocolate franchises have moved into vacated mom-and-pop businesses. Several fourteen-story buildings have risen far above the rest and contribute noticeably to the commotion of downtown. The tree-shaded green, rich with history, lies in the center of the city, girdled by churches. Everywhere you look, you see guide dogs, chugging along at breakneck pace or moving slowly, carefully, dogs being put to one distraction test or another, by a pizza slice left on a sidewalk, by a squirrel, pigeon or cat, or by an unruly barking pet tied to a parking meter outside a coffeeshop. There are dogs weaving their way through webs of scaffolding or police barricades, past spewing diesels parked across sidewalks, dogs picking their way around planters and trees, under flapping flags and low-hung branches, through puddles, ice and snowbanks, in hot weather and cold, from early morning till dusk. And clutching the harness strapped around each dog is the hand of a trainer, or the hand of a blind person learning how to do it for the first time or brushing up and bonding for the second or third. At every corner, nook and cranny of this bustling city, teams are pushing their way through real-life situations. They labor in traffic, on city buses, trains headed to New York, inside the labyrinthine corridors of the county courthouse, in malls, chugging through racks of suits and dresses inside Epstein's Department Store, one of the few remaining family businesses struggling to stay alive. Everywhere you go in this town, you can hear a chorus of "atta boy" and "atta girl" as shepherds and Labs and goldens stop at every curb, then step cautiously into the streets where they are tested by distracted drivers making a right on a red or by choreographed, near-disastrous events imposed upon them by the Seeing Eye's own drivers. Pete Lang inches the huge Dodge van into a large garage attached to an unadorned, turn-of-the-century boardinghouse on Mt. Kemble Avenue, a central city location owned by the Seeing Eye and used as a drop-off point for students and trainers. Eight vans are already parked, each with as many as seven dogs waiting eagerly to be harnessed by a student or trainer for a downtown trip. Several trainers are putting their dogs through the deliberate, careful pace of obedience exercises. Dogs are asked to come, then sit, then fetch a leather glove or a key chain. A dog barks from inside one of the vans and Pete hushes him. Lee, who was my instructor with my second dog, Topper, is leading a pup down the metal stairs. "We built that staircase without risers to be sure that our dogs would not be afraid of open staircases," Pete says. We leave Tobias hitched to the wall and, unimpeded by alpha-dog conflicts, we observe Pete in the streets of Morristown as he retrains Connor, a five-year-old yellow Lab. "I'm working Connor to get him ready for an elderly gentleman with lots of new health problems," Pete says. Connor's been out of commission for nearly a month and needs this daily work while his blind handler recuperates. Connor is careful and Pete slows him down even more. "I don't get to do this as much as I'd like," Pete shouts back over his shoulder. "It's a young man's job. I told my wife Jane the other day that I'd give up being training manager in a heartbeat if I could get back to this. Being out in the street training dogs is the work I love. "A couple of years ago the Seeing Eye celebrated its seventieth anniversary," Pete tells us as we take a break inside a coffeeshop, Connor now relaxing under the table. "It's sort of amazing for me to realize that I've been there for half its existence." Pete knew early on what he wanted to do. There was pressure from his family to find a calling that would make him as financially secure as his accountant father, who provided handsomely. Not rebellious by nature, Pete studied business administration in college, hating every moment. The certainty of a sedentary business life went against his still largely undefined longing for a deeper meaning, not to speak of the outdoors. He knew that there was something spiritual out there, something beyond helping one's self, but he didn't yet know what that something was. "A decisive moment came in a class in which the professor asked which of us was concerned about the problem of world hunger. To my amazement, mine was the only hand that shot up in the air. I was disgusted and began looking for books in the college library which had nothing to do with business administration. Of all things, I found Morris Frank's The First Lady of the Seeing Eye. It grabbed me in a way that nothing had until then," he says. "The fact that dogs could be trained to lead blind people made me gasp for breath. Just then, I happened to see a blind man working a German shepherd in the streets of Cincinnati. And, Andy, I couldn't stop gaping at the man. I was moved to tears and I wrote a letter to the Seeing Eye, curious to learn more about the process. By return mail, they invited me to come have a look. Two months before my graduation, I went east for the first time in my life. I arrived in Newark the day before my Seeing Eye appointment. I was terrified of the city, found a Y, locked myself in, wishing the night would end quickly, and the next day I took the bus to Morristown." We now follow Pete into the town green where he tests his charge for squirrel distractions. Connor seems admirably uninterested. Pete points out one of the historic buildings ahead of us. "I remember when they had a fire at this beautiful old church," he says. "It was gutted and took a long time to rebuild but it was good training for our dogs, who for months and months had to work their way through the construction site." For Pete, the real world of objects at rest or in motion must be nothing more than a testing ground for dogs. Back in the Seeing Eye's town garage, Pete introduces us to Christian, a tall young man who had just been accepted as a new apprentice. "This fellow really moves me," Pete tells us. "He's the same age I was when I started and he's doing it for the same reasons." Christian is a skier who came to the Seeing Eye to try to do something meaningful with his life. "I need to do work for others," Christian says, "not just for myself. I feel ready for that. And here I can do it without giving up the outdoors." In the package the Seeing Eye sent Pete thirty-five years ago, there was a pamphlet with the title A Career That Counts. As Pete recalls the moment of receiving the piece, he chokes up. He coughs and covers his face with his hands. "I had no idea I was going to react to the memory of that pamphlet like this," he apologizes, "but I am so incredibly lucky to have found my entire life on my first try." Pete is a gentle, shy man. "My mother was very supportive but my father was astonished. 'Four years of business administration and you want to be a . . .' He couldn't say it, Andy, 'a . . . dog trainer?' " Pete laughs. "With the pamphlet, the Seeing Eye sent an application, and now I felt I was at the beginning of a mission to do good work. I knew I wanted it more than I had ever wanted anything." We go out into the streets again, this time with Tobias, and follow a trainer with a young dog on Maple, then a blind person from the current class doing her solo on the Elm Street route. "When I was Christian's age," Pete says, "one of my favorite books was Albert Schweitzer's Reverence for Life. It helped me realize that my own life didn't need to be about dollars and cents. I knew that everything was going right when I first walked into the vice president's office for my interview and spotted a bust of Schweitzer on the bookcase. That did it," he says. Tobias is always happy but, as we walk, his tail is wagging more than usual. I am wondering how much of this place and these routes he remembers from his training. Often, when we pass a place we have visited even once, he will pause, look back at me to check--yes? no? you're the boss!--then, with no sign from me, he goes on. He does that now at the entrance of a coffeeshop he hadn't visited for over a year. "In Vermont, Tobias and I rarely see this much traffic." "Great!" Pete says enthusiastically. "I'll supervise you on the High School route." As a rule, I'm a self-conscious walker, too aware of how I think I'm seen. Blindness has contributed to my shyness and reclusiveness, a timidity of unnecessary contact. I often want only to blend into the landscape, embarrassed by the conspicuousness of blindness. Though there are those who avoid a blind person like the plague, I have been told that generally most people smile at Tobias and me. I believe that the sight of man and beast at work together makes more than a few people feel good, seeing this amazing partnership of inventiveness, synergy and love. Now, as we charge toward the center of town, I feel particularly sure of myself and my dog, relishing the specialness of this occasion, being observed by the best of the trainers and by Loie. She sees me work my dog all the time, but here, in these circumstances, it seems like an intimate viewing, like sitting in on instructions given to novitiates of a secret order. Tobias and I are flying now, stopping inches from each curb, crossing at busy intersections, threading our way through crowds. For the two of them, I feel I am performing my best tricks, figure eights, loop-the-loops, belly rolls. Now, at one crossing, Pete warns me that he wants to test my dog's ability to disobey and as traffic speeds left and right in front of us, he taps my shoulder. "Tobias, forward," I command and, remembering his lessons well, he does not budge. "I don't think I can watch," Loie says. "Can I meet you in the coffeeshop?" Pete turns to her and laughs. "Andy's been doing it for years, and Tobias is doing great work." "Okay, Andy, now," Pete says and again Tobias holds his ground. When the cross-traffic stops I tell him "forward" for the third time. He steps out into the street cautiously, and we cross safely. I choke up with pride and remember the first time I stood at a corner and was about to cross when Kris, my first trainer, said, "Today we are going to test Dash's ability to disobey." "We are?" I had no idea what she was talking about. "I'm going to ask you to give Dash the 'forward' command right into traffic," she said. "This can't be true." "If he does well, he will either not budge or he'll go only as far as the moving car and stop." "And if he doesn't do well?" No response. "How many people die doing this?" I was pleading now. "All right, Mr. Potok," she said, tapping my shoulder. "Now!" Somehow we did it, everyone in our class did it, and, after that day in the streets, we sat around exchanging stories of our exploits like crusty old veterans of foreign wars. Now, as Tobias and I continue on our route, one of the Seeing Eye commandos in his van nearly runs us over, his tires glancing the edge of the sidewalk. Tobias, hero for the day, yanks me back, but an ambulance full of young emergency workers pulls up beside me, outraged. "That drunk drove up on the sidewalk," one of them tells me. "I can't believe what he just did. We're going after the son of a bitch!" "That's very nice of you, but he's one of us." "One of you? But . . . but . . . Are you sure?" They need to be sure but they don't want to believe it. We all smile happily at them and finally they drive off, more than a little disappointed. Pete has arranged with the cowboy driver of the van to make a turn toward us in the middle of our next crossing and, even though Tobias has stopped to let him by, the man reaches a hand out of the car window and smacks my perfect shepherd lightly on the nose with a rolled-up newspaper. Tobias jerks us back, yelping as if he has been stung by bees. I know that he is insulted by the impudence, for he must know that his street behavior had been exemplary. "I can't believe he did that to our dog," Loie says, a bit shaken. "It was a useful lesson," Pete assures her. "It'll serve as a reminder for Tobias," he says as I console my dog. "He'll keep an even safer distance from moving cars." We drive back to the lovely rolling hills outside of town where the main Seeing Eye buildings are located. We talk for a while in Pete's office as we await the call for lunch. "When I first got here thirty-five years ago," Pete says, "they were just breaking ground for the construction of these buildings. It was beyond my wildest dreams that I could be a part of all this. Everything about it appealed to me. I knew I could handle this job and at the end of that day, they offered it to me. I took it in a flash. Let me tell you, I could have flown home without an airplane. I graduated on June 7, 1964, and began work at the Seeing Eye June 8." Excerpted from A Matter of Dignity by Andrew Potok All rights reserved by the original copyright owners. Excerpts are provided for display purposes only and may not be reproduced, reprinted or distributed without the written permission of the publisher.