A Matter of Dignity Read online

  CONTENTS

  Preface

  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 Lago, photographer, teacher, prosthetist

  IAWS

  Led Henter, computer engineer and entrepreneur

  SCHOLARS

  Adrienne Asch, professor of bioethics Rosemarie Garland Lhomson, professor of English Paul K. Longmore, professor of history

  INTERNAL MUSIC

  Connie Lomaino, music therapist

  NEIGHBORS

  David Werner, biologist, health educator

  BROTHERS AND SONS

  Jay Neugeboren, writer Mona Wasow and Anne Larkin, teachers Sam Lsemberis, agency head

  Epilogue I

  Books by Andrew Potok

  A MATTER OF DIGNITY

  MY LIFE WITH GOYA

  ORDINARY DAYLIGHT

  FOR LOIE who makes everything possible

  PREFACE

  Recently, on the edge of a quiet Vermont lake, some twenty of us were whiling away a perfect late-September afternoon. We had all paddled from the boat landing to this spot in a half-dozen kayaks and as many canoes. Birds were calling from every direction as a gentle breeze rustled the yellowing leaves. There was Danny, telling jokes, some of which he had already e-mailed around. Knowing him, he was in shorts, the struts and flanges of his new prosthesis gleaming in the sunlight. Probably a couple of streamers with lightning bolts were hanging from the socket. Steve and Claire sat by themselves, smoking, getting ready for fishing. Geoff and Peggy were playing Go Fish with their nine-year-old. Etsuro, who was blinded in a car accident in Japan and emigrated to avoid ostracism for his bad karma, was posing à la some oriental martial art, his white cane aloft in place of a javelin. My guide dog, Tobias, watched intently at Etsuro's heels. The rest of us were lying about, sunning and schmoozing. Hard-boiled eggs and peanut butter and jelly sandwiches were being shared or traded for some newly concocted Vermont cheese.

  After an hour or so of lolling about on land, I folded myself into a one-person kayak and pushed off, leaving my wife Loie, my friends and my puzzled dog on shore. As I began paddling, I relished the surge, the wantonness of my water freedom. The pleasure of being out there, where there is no fear of collision or danger or embarrassment, had few parallels in my earthbound life. The feeling was delicious. I picked up the pace and shot out into the middle of the lake. I hit nothing for there was nothing to hit, no shoes or chairs to trip over, no half-open doors, no wineglasses at the edges of counters to sweep away. My friends’ voices, like the late-summer buzzing of flies, became indistinct, then wafted lazily into earshot again. Geese were honking high above. I heard someone calling my dog's name, followed by squeals of laughter.

  On this glorious day, in perhaps the final third of my life, I found myself taking stock. What had brought me this freedom and this comfort? How to plot the rugged terrain I'd traveled to get here? Derailments and detours have nudged and shoved me off center in the course of my life, some as a result of war, some via disability. Of the more recent dislocations, who among the friends on shore, some blind like me, some not, had traveled a similar route to mine? And who had made the trip easier? I pondered living in this country, at this moment in time, pondered how technology, a privileged position in the world and evolving attitudes toward disability enabled me to have this much independence, accessibility, mobility and dignity. But I knew that in spite of that privileged position, to be sanguine about disability and attitudes toward it was simplistic. I knew very well that even here, in well-endowed America, the disabled are grossly unemployed, unequal, untended.

  For much of my life, I gave no thought to this. Like most people, I had grown up with the accepted pathological definitions of disability as conditions that limit human motor, sensory or mental activity. A vague noblesse oblige attitude defined my occasional encounters with anyone outside the scope of my trajectory. I should have known better, but, though a refugee from war when I was a little boy, I had been quickly and thoroughly Americanized. I thought that there was no limit to my possibilities, and my responses to others who seemed less fortunate were often bounded by conventional stereotypes, by sentimentality, by the familiar inclination to dismiss and marginalize those who were outside the tribe of “the normal.” Only recently have I begun to see disability politically, as another form of ethnicity.

  Drifting in my kayak, I felt a powerful urge to explore the quiet ways that people embrace work that lies outside the sanctioned selfishness of the times. And some of those people doing this work were picnicking on the shore of this lake, the tech specialist, the rehab teacher, the counselor. Starting in my own backyard, I resolved to let that surge of energy lead me elsewhere, everywhere. I wanted to go off to meet them all, disabled or not, those who engaged in work and thought, technology or public policy, prosthetics makers and trainers of guide dogs, people who were devoted to independent living and civil rights. I wanted to learn what motivated people to make better tools, to take better care, to help change laws and attitudes. I knew a little about some people's need to be rescuers, about others’ religious or ethical imperatives for service, not heroes or saints but those engaged in what I had come to think of as an honest day's work.

  A breeze must have blown my kayak toward shore for I was brought back to the present by a voice to my right. “Watch it, Andy,” Carolyn yelled. “You're drifting toward the waterfall.” Just to be sure, she had posted herself mid-lake to keep an eye on the kayak antics of those of us who thought we were utterly safe.

  When I was back on shore, Scott, a mobility instructor, said, “I never see any of you like this. It makes me think of sea turtles, so graceful and elegant in the water and so clunky on land.” Tobias jumped onto my kayak and licked my face, then ran to show me his new friends. Happy to be temporarily off harness, off leash, this smallish sable-colored shepherd is one of the joys of my life.

  But not all of my blind friends want a guide dog. Some are revolted by the idea. For Joe, a cane user, who has pulled out his new ukelele to strum the “Ode to Joy,” dogs simply don't fit his compulsively neat lifestyle. A woman I know in Boston dislikes the sentimentality dogs evoke in others. “I hate it when they think the dog is brilliant and the blind person a hopeless klutz,” she said.

  The world is organized for a kind of average person designated normal. When this vision of ourselves is nudged off center by disability, the new, skewed picture undermines our established expectations and values. We must figure out all over again how to be and how to face others. We were once quick and deft, rich in potential, and now we are becoming fragile, diminished, even repellent to some. Roles are reversed, friendships come undone, loves bend and break, confidence is lost, ideals erode. We begin to live in a new reality.

  But what a diverse population we are, as different from one another as from the ablebodied, different not just inside our disabilities but in what we bring to them. We can be rebellious, obnoxious, proud or combative. Our disabilities may feel comfortable, isolating, challenging, infuriating or ordinary. And how differently we respond to one another and to the informed or innocent entrance of nondisabled people into our lives.

  According not only to the ablebodied but to many within the disability community, people with disabilities have a certain obligation to be docile, unprovocative, undemanding. If an ablebodied person crosses over into disability space, he expects a warm welcome. “No one likes to be blown off by a nasty blind guy,” a friend once confided. Though no one likes being insulted by a sighted person either, the blind guy elicits certain dee
p, perhaps primordial responses, unmediated by complexity or wonder, arising from cultural expectations of how humans should look and act. Perhaps avoiding the disabled runs deeper than simple social ineptness or lack of empathy. Perhaps this one is zoological, based in the laws of natural selection, a built-in evolutionary tactic of favoring what most resembles us, with every body part functioning, every system quivering with static energy, ready to spring.

  In fact, not all disabled people are nice. I take a perverse delight in my own and others’ anger, entitlement and rebelliousness. I know a quadriplegic who prides himself on mowing people down with his wheelchair. At airport elevators, he nudges his way toward the front, knocking people about. He reports that often they are ready to scream at him until they look down to see his pitiful condition. “Oops, sorry,” they nearly always end up apologizing. “I feel like a little kid,” he says, “testing to see what I can get away with.” Once, though, as he forced his way toward the front of the elevator line, he smacked a blind guy and had to pay. “Can't you see that man is blind?” a pregnant lady in line yelled at him. And then he understood that even in the disability world there was a certain hierarchy of entitlement.

  I wondered about the very definition of disability: who was disabled and who was not. The thought of disability elites seems ludicrous in spite of a kind of blanket permission in the air these days for most anyone to take the role of victim. Nonetheless, the blind have long been considered, perhaps unjustly, to be on top of the disability pile, receiving more services and perks than any other disabled category. Perhaps this is because being blind is most people's worst nightmare, perhaps because everyone loves the idea of Milton or Homer or Stevie Wonder. But a wise elderly man with post-polio syndrome commented that to him it seemed clear that, in the final analysis, hierarchies among the oppressed don't mean a thing. If the eugenicists or other racists come upon us to decimate all the blacks, all the Jews or all the disabled, lightness of skin color, the percentage of Jewishness or the category of disability will not matter much.

  When Penny Marshall, the Hollywood director, was considering making a movie of my book Ordinary Daylight, which chronicled the early stages of my blindness, she came to Vermont to check me out. After dinner, we sat in my living room sipping brandy. “My friends say I can't keep making affliction movies,” Penny Marshall said, weighing the issues. “They also say I don't know a thing about blindness but they are dead wrong. I just got my first pair of glasses and suddenly I became middle-aged. I can't see a damn thing without glasses. Flirting isn't the same,” she said. It took me a few moments to regain my composure, yet it is true that our possibilities slip away with age and its decrepitudes. I know as well as anyone that the best flirtation is nimble, unencumbered, subtle and quick, and most likely isn't helped by peering over spectacles. Among the litany of losses that had once caused me grief, flirting had been near the top of my list.

  A few years after Penny Marshall's visit, the wearing of glasses happened to be the salient issue in a case before the Supreme Court testing the scope of the Americans with Disabilities Act. The court was asked to decide if a woman denied a job as an airline pilot because she wore glasses was covered by the antidiscriminatory provisions of the ADA. Even though she didn't consider herself disabled for wearing glasses, she had been refused employment on the basis of a perception of disability. The Supreme Court, interpreting the ADA narrowly, denied her claim, drawing a distinction between workers whose disabilities can or cannot be mitigated by corrective equipment or medication, squeezing the definition, narrowing the circle of disability. Thus the ADA's safeguards might well vanish when individuals make themselves more employable through ways of overcoming their limitations Here were a new bunch of catch-22s. If disabilities do not include conditions that are correctable with medication, prostheses, hearing aids, insulin, perhaps even guide dogs or wheelchairs, then people with these conditions may not be granted “reasonable accommodation”—any modification in physical access necessary for employment—one of the more interesting and forward-looking concepts of that amazing piece of legislation, the Americans with Disabilities Act.

  Inclusion or exclusion of people who wear glasses in the perception and definition of disability is a more interesting question than it appeared to be at first laugh. When lawyers were initially writing the ADA they assumed a very broad definition of disability, one that included anyone with any serious illness whether it could be fixed or not. They toyed with the subject of glasses, knowing on the one hand that without glasses a lot of people couldn't see a thing, and on the other hand suspecting that the general public would probably not accept such an inclusion, mostly because this country seems to feel a need to draw a clear line between “them” and “us.” It is still difficult for most people to conceptualize a spectrum of physical abilities and disabilities that all of us are on. As for the ADA framers, they turned out to be wrong in thinking that people would not be discriminated against for wearing glasses.

  But even defining myself as blind is not without some ambiguity. I have been legally blind and getting worse for some thirty years, yet now that I have only light perception and at times can detect some movement, I have begun to paint again.

  “Your painting is a tour de force,” a friend said to me.

  “It is not!” I said with a shudder, imagining it hanging in the lobby of the Lighthouse, judged only among the “very special.”

  “A man who can't see, painting,” she said. “What else can it be but speciali”

  “Forget I'm blind,” I told her.

  “But … but,” she sputtered. “No one can forget you're blind, for chrissake.”

  It's a dilemma, wanting my painting to make commentary on, say, the human condition. I tell myself that diversity doesn't simply add superficial variety to the human mix. It can improve the mix, add new ways of knowing, of creating and interpreting the world. Some say that being different means being less, others that it has within it the possibility of a new synthesis, a new paradigm. And it can provide the joys that attend transformations. Philosophy or anthropology or psychology might well take on fresh meanings when viewed from some new, unique slant. Skiing blind or on one leg can be ecstatic, the sensuality of surrender unparalleled. And so, I tell myself, it will also be with painting.

  A while back, I sat at a friend's dining table across from Oliver Sacks. I thought that now I had the perfect opportunity to add my bit of weird disability behavior to the lists of exotica he chronicles with so much gusto and imagination and insight. I'd not only eagerly read the tales of his neurological curiosities but I've taken a lot of pleasure reading elsewhere about artists who not only worked in spite of their impairments but probably counted on them as the sources of their artistic uniqueness. I reveled in Van Gogh's glaucoma, Renoir's myopia. I scavenged the literature for retinopathies, for uveitis, for retinitis pigmentosa, my disease. The writing or music of manic-depressives and schizophrenics holds a special interest for me. I'm beginning to belittle nice, normal eyes or brains going their dull way through the world, observing and commenting like Boy Scouts about sexuality.

  I told Oliver Sacks that after a twenty-five-year hiatus, I was painting again. “It has required weird adaptations and innovations,” I said, describing how I'd measured out the room to avoid collisions, the easel a bit more than an arm's length in front of me and, to my left, just below my elbow, a table spread with brailled paint tubes, jars and bottles of oil and turpentine. I told him how I wiggled my gloved left hand to locate the canvas, how I'd left pushpins in the canvas to mark where my brush had just been. He nodded and went on eating. I continued, telling him excitedly about the confusing role of intentionality, about accidents and unintended gestural clumsiness.

  He was polite and seemed happy that I was doing what I wanted to do, and then proceeded to tell us about people with Williams syndrome, the color-blind of some tropical island, some high-functioning autistics who were obviously in a very different category than a painter
trying desperately, perhaps foolishly, to keep on painting.

  Tail between my legs, I went home to accept what was really going on. My painting was a private pleasure only and, aside from being a relatively old guy trying to recapture his youth, inhaling again the sweet smells of oil and turpentine, or perhaps acting out a previously unconfessed desire to be supercrip, I finally realized that painting might best be left to the sighted.

  The afternoon was beginning to cool on our beautiful Vermont lake and we climbed into our canoes and kayaks again, heading back to the landing. We yelled across the water to each other with directions and jokes. We'd arranged to ski together in a few months. In our car, driving a couple of exits south on the interstate, I admit to Loie that, until now, I have shown only curiosity, not involvement, in disability issues. Now, I say, I want to understand what some disabled people mean when they talk of “disability pride.” Personally, I don't look at blindness with a lot of good cheer, though there are the cheerful blind who are able to chirp their way through life, considering blindness an inconvenience only. “I just don't get it,” I tell my wife. “Blindness, all serious disability, is so big, so life-changing. Still, given that we are stuck with it, I suppose it's better to claim the damned thing than to angst about it.”

  “If nothing else,” she says, “not angsting probably prolongs life.”

  There is something else to it too. Will claiming it tie me to disability, making it the focus of my existence? How strange our lives, the turns that have made blindness and disability define us more than painting or architecture. Not only as defin-ers but the main preoccupation, the career, the mark made, the thing left behind.

  Claiming disability has other pitfalls as well. It challenges our insulation from others who are making equal claims. It pushes us into membership in a larger community of people like ourselves, and this has not always been easy for me.