by Andrew Potok
Many years ago, in front of the doors leading into a Low Vision Conference in Boston, I watched a bunch of blind demonstrators march clumsily in a circle. Everyone who had business inside had to fight his way through them. My business, the first of such occasions for me, was to give a talk on low vision, in contrast to total blindness. Back then, that was a lively insider issue. I have no recollection of why the demonstrators were there, but watching them, I was horrified. They stumbled over each other's heels, knocking placards out of one another's hands, looking foolish, unseemly, pitiful. I was on the road to being blind like them, and they were more than threatening. They filled me with fear and loathing and shame.
Since that time, I've perceived my rejection of those natural ties as misguided. Even though I don't particularly seek the company of disabled people, I recognize more and more that there are now fundamental life experiences that I can share with no one else. Sharing them, feeling understood in my dif-ferentness eases the loneliness that comes with being an outsider. In a similar way, I don't seek out other Jews, but sharing stories, humor and a history brings me a deep sense of belonging.
But my feelings of terror before disability and incapacity in the guise of a few clumsy blind demonstrators plagued me for years. At the time, though, I weaved my way past them and entered the spacious, marbled halls of the conference center. Exhibitors beckoned me with a dizzying excess of goods piled high, here a table of talking watches, there talking carpenters’ levels and scales and adding machines. The screen-reading devices for computers, still in their infancy, looked essential to my future well-being. There were white canes with sonar attachments to alert the user to the smallest obstacle, braille slates, tapes and punchers, devices that transformed printed letters into electrical impulses of brailled dots. There were magnifiers of every kind, closed-circuit TV systems that enlarged the printed word, monocular telescopes, infrared devices used for night killing by the army or night wandering by the night-blind like me. This was a veritable blindness mall, a low-vision theme park. And then, in a booth to one side, a man was handing out leaflets about a guide dog school he represented. His own harnessed shepherd lay quietly at his feet. More than anything else displayed there, this got me, really got me. I wanted one of those.
This cornucopia of ingenuity, these goods and services, that dog, were enough to satisfy anyone's consumer addiction, but I also remember the nausea that came over me, the mix of revulsion and attraction to forbidden objects. Touching the Talking Book tape machine that would, from then on, be my primary reading source was like touching poisoned mushrooms, dangerous but inviting. I wanted to take it all home, all the gadgets, like a new wardrobe.
As it turns out, I have benefited from almost everything exhibited at that conference, things magnified and voice activated, things projected, enlarged and transformed. Now I'm dependent on taped books and screen-reading computer software, while my mobility is tied inextricably to guide dogs, three so far.
In those early years of my advancing blindness, I did take care of myself by learning new skills but, while in the middle of a doctoral program, I also bolted the rational world to pursue an insane “cure” offered by a woman in London who claimed she could cure retinitis pigmentosa with bee stings. My attempt to obliterate my unacceptable limitations cured me of ever looking for “cures” again. Finally, I have come to realize that many of life's essential problems aren't soluble. Misery doesn't always lend itself to remedy. As a matter of fact, this kind of attitude, I have come to believe, misunderstands what makes life interesting. Being cured of one's disability, one's peculiar psychology, one's angst, though sought avidly, runs the risk of leaving a residue of dullness and uniformity. All of this must seem silly to a society intent on ease, comfort, normalcy, a desire not to stand out in nonconformist ways, as crazy, poor, disabled, loud, different. But just as tragedy is not due merely to error, every question is not answerable, every ill is not always curable, everything does not always come out well in the end. “Everyone who is born holds dual citizenship in the kingdom of the well and the kingdom of the sick,” Susan Sontag wrote. We are all a little bit ablebodied and a little bit disabled. The degree to which we are one or the other shifts throughout life.
That afternoon on Waterbury Reservoir with friends and colleagues pushed me to want to explore the work and philosophy of people who do not consider disability a curable medical problem but a social one, people who train guide dogs and make computers speak. I wanted to connect with people who have shown up on the barricades, taught, written, reached others who seemed beyond reach, and those who have not only changed our domestic laws and priorities but have changed the lives of people in other parts of the world as well.
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 to 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. Uniformity tends toward dullness and extinction, diversity toward higher forms. What could make more sense than to value all that is diverse, unexpected and exuberantly impure?
DOGS
PETE LANG
guide dog school manager of instruction and training
PROLOGUE
For some, independence is not a disability issue. “It's a stupid issue,” a blind friend said. “Why pick on disabled people to talk about independence? It's everybody's issue.”
Even though the concept of independent living is at the heart of the disability movement, the word independence seems irrelevant only to those like the congenitally blind who learned cane technique and braille very early in life and could then get on with it, no longer straining to see. Retinitis pigmentosa, however, is a physical condition that is constantly changing, and there is no respite from preoccupation with adjusting to new losses. Like the clanging of a loose muffler under a car, it's a constant reminder of its own existence. There are times, of course, when I am unaware of my blindness, immersed in work or other pleasures, but the blindness is never not there, and the struggle for independence, the preoccupation with gracefulness and dignity, the self-consciousness of an identity in flux muddles the tasks of daily living.
“If independence or appearance or decorum are too simplistic as disability issues, what are the truly germane issues?” I asked a wheelchair-using activist.
She didn't skip a beat. “Universal health care,” she said, “reliable personal assistants and attendants, community mental health, affordable, accessible housing, relief from work disincentives, better public transportation and broad enforcement of the Americans with Disabilities Act.”
Obviously, independence is not an issue only to those who have solved or resolved it, just as learning to walk or ride a bike is not an issue five minutes after accomplishing what had once seemed so daunting.
In my evolution as a person whose blindness began in adulthood and progressed steadily, the concept of independence loomed large. All those counselors and mobility instructors urged me on. “The cane's your ticket,” they said, “and if you don't learn it well, you'll be a hitchhiker forever, ashamed and enraged, hanging on to arms, begging others to take you for a walk.” And indeed, without my dog I become a beggar for mobility, pitifully longing for my lost manhood, my humanity.
“My cane requires no loving or grooming,” says my friend Joe, defending his choice to use it rather than a guide dog. “When I'm working at my desk, I stick my cane against a wall until I'm ready to use it,” he says. “It's not panting at my feet.”
I like the panting. And when we're out and about, Tobi
as deflects questions about my disability by standing in for those questions. Instead, people ask about him and are largely satisfied. Often this suits me. Sometimes not.
I was on the treadmill at the gym, earphones stuck inside my ears, listening to a book. Suddenly I became aware of some guy waving his arms in front of my face. I turned the machine off, unplugged an ear. I was trying to read a book on evolutionary biology, hard enough without the competing hip-hop blaring on the club's loudspeakers, but who knew, maybe this guy had something important to announce, like a fire in the weight room. Unplugged, I listened. “What's the dog's name?” he asked. I muttered Tobias's name and plugged in again, but the guy wasn't satisfied. He wanted more. He was windmilling his arms again. I pointed to the earphones but he wasn't having any of it. Disconnecting, I listened to his urgent words. “How old is he?” the man asked.
“He was trying to make contact with a blind guy,” Loie told me later, at home. “Look, Andy,” she said, “these people aren't necessarily bad. That guy wasn't used to seeing a dog tied to the bar of a treadmill. He's intrigued. He loves dogs. He's starved for dog talk.”
I admire the people who have gone beyond self-consciousness or shyness or a silly sense of decorum, people who can't be bothered with whining about how hard it is to ask directions or to fumble for a door handle. “Get on with it,” they say, “get on to what's important, to whatever is on the other side ofthat door.”
I remembered a defining moment when my need for mobility help took on a life-and-death urgency. I was visiting in New York and trying to hail a cab to meet a friend downtown. In the early evening, I positioned myself at an insanely busy corner of Sixth Avenue and Fifty-seventh Street. I waved at every moving car and when something resembling a taxi stopped, everyone in the world ran in front of me to grab it. Caneless, of course, because only very blind guys use canes, and dogless, for how could I possibly bring a dog into my mother's Louis-the-god-knows-which dainty little apartment, I didn't stand a chance. After half an hour, I stumbled down the stairs into the subway, a direct ride downtown. The Fifty-seventh Street stop was relatively new and well lit. The train was nearly empty and I sat counting off Rockefeller Center, Forty-second Street, Thirty-fourth, Twenty-third, Fourteenth and West Fourth, where I got off. The long gritty platform was nearly deserted. Having no one to follow, I inched my way to a staircase and stumbled up to the next landing, which was dark and stank of urine. On the middle level, which connects the downstairs platforms with those above, I heard voices by a far wall. As my footsteps echoed off the cement, the voices were ominously stilled. I felt eyes assessing me. Agitated now, I crashed up the next flight of stairs. Though the platform was wide enough, I felt I was walking a tightrope between dropoffs to the tracks on either side. I found the long echoing corridor to the final stairs that led out to the street, the foul New York air smelling sweet and fresh. I worked my way to a corner where a couple of cars were waiting for the light to change. I was disoriented but it was strangely peaceful, the roar of traffic distant. Gingerly I stepped off the sidewalk and suddenly found myself inside a sea of headlights and blaring horns. I'd misjudged everything. I, who had escaped from a European war and survived blindness until now, was about to be mowed down by furious taxis and trucks roaring up Sixth Avenue from Houston Street. Car by honking car, they allowed me to get to the sidewalk, and when the angry pack sped uptown, I leaned against the lamppost, my legs too wobbly to move. I had lost my bearings completely. I didn't have a clue how to get to Washington Square. A gust of wind blew garbage at me. I walked slowly toward lights and, as accidentally as Columbus ramming Santo Domingo, I walked into a pay phone. I called my friend, who figured out where I was. “I need a dog,” I managed to say when he came to save me.
For years, I'd been running into a Seeing Eye representative, with his dog, at blindness-related conferences. I never missed an opportunity to talk with the man and he, for his part, would urge me to file an application to the Seeing Eye, though I was pretty sure that I still had a little too much vision. Nevertheless, I liked fantasizing a life made perfect by a perfect guide dog. “Ralph,” I would say, “I've got to take a leak,” and Ralph would sniff out the men's room, then sit waiting by the urinal.
The dog belonging to the guy from the Seeing Eye always lay quietly at his feet and, at the end of the day, the two made their way easily to his hotel. Oh, how I wanted a dog, a dog like his dog who would lead me through crowds, through buildings and hotel lobbies, a dog who would navigate around restaurant tables, take me to the gate in strange airports, cross Sixth Avenue safely, allow me to say, “Excuse me, I have to go now,” to the person who corners me at a party, a dog who would lead me through the maze of the health club where I work out.
I liked fantasizing a life made perfect by a perfect guide dog who, I thought, required nothing more in return than a pat on the head, a scratch behind the ears. As I was to learn, the combination of me and Dash, then Topper, and now Tobias required and still requires a great deal more than that. It takes patience, discipline, persistent determination, respect and endless love. Dogs smell, shed, get ill, revert to deeply ingrained beastly behavior. They can be picky eaters, take up an inordinate amount of psychological space, need playtime and fairly regular trips outside to relieve themselves, even if I am engrossed in conversation or in the middle of a fiendishly original thought or the last five minutes of a ball game.
Dogs have been domesticated for some twenty thousand years. About then, they seemed to have figured out that they would do well to attach themselves to bands of humans with whom they could negotiate an interesting reciprocal arrangement. In return for barking at strangers or finding dead carcasses in the bushes for all to share, they would be fed, loved and groomed. In their domesticated state, they seem to live to please and charm and generally amuse, but when trained, they can be superbly useful animals and are used for many interesting purposes, guiding the blind just one among them. They are fabulous sniffers, retrievers, pointers, and have recently been trained to help the hearing-impaired, epileptics and the physically frail and wobbly.
In a sixteenth-century Italian painting, a dog stands at one end of a long, loose rope, an old bearded blind guy in a togalike outfit at its other end. Nothing about that arrangement could possibly work. Dogs became useful guides only when someone had the brilliant idea of attaching a rigid handle to a harness strapped around the animal's body. Only then could the blind person pick up messages from the dog's movements and act on them quickly and efficiently
The first time dogs were used as guides in the United States was 1929, when the Seeing Eye opened its doors. The oldest of American guide dog schools, the Seeing Eye last year matched 300 teams of blind persons and guide dogs. At this writing, they have over 1,800 working graduates in every corner of America and beyond. Since their establishment, they have made more than 13,000 working partnerships.
The Seeing Eye is a sizable enterprise, existing on a huge endowment collected over the years from private and corporate donations. All of its services are free to blind people, who are the sole beneficiaries of them. Not only the dog but all the equipment, the elegant three-week residency in Morristown, New Jersey, air fare to and fro, and lifelong follow-up training whenever the student happens to need it. Unlike some other organizations that serve people with disabilities, there is nothing patronizing here. In another age, this work might have been done by some kindly order of monks or doctrinaire communards. In our age it would more likely be done by social workers. It is a wonder to me that, in the midst of the sickness called individualism, one can point to this work and wish it to be a model for something more universal, something like health care and education. No social workers are involved, no sisters of mercy, only dog trainers. For a cynic and pessimist like me, the work done here is a cause for wonder.
Services to the blind have historically been at the forefront of disability rehabilitation work. It's possible that the blind have been seen, over time, as the most helpable or the
most pitiful, the least demanding or the noisiest. Whatever the reasons, all blind people get an extra deduction on their income taxes and free mailing services for blindness-related material. Aside from these relatively minor perks, rehabilitation services, though not always pleasant or useful, exist to teach cane travel and certain other blindness skills such as braille and independent living. Because blind people have tended to be the most organized and have created a political voice, they have taken a leadership role, not always a welcome one, in the disability community. Some blind activists declare their needs to be different enough, thus special enough, to warrant a separate, strong list of concerns and demands. They feel that they would be held back by participating in broader coalitions. Others among them realize that coalitions breed greater power, as was certainly the case in the making of the Americans with Disabilities Act.
Neither cane nor dog is perfect. In the realm of absolute safety, neither is eyesight. For teams of blind people and dogs, any number of things can go wrong. At times, I mistrust my dog's decisions. He's just a dog, I tell myself as he stops, for reasons of his own, in what I am sure is the middle of a block. I urge him to go on but he is adamant. Only then do I realize that he is right and I am wrong. A car is backing from an alley into the sidewalk.
I have heard cane horror stories and dog ones. I knew a great cane traveler, who, walking quickly on a Detroit street, walked face first into the metal cab of an eighteen-wheeler parked across a sidewalk. His cane went under it, picking up no clues. His face was severely damaged. I've heard of lethal accidents to dogs and handlers in New York subways as well as on quiet residential streets.
As for me, I am right-handed, right everything. That side of my body—that hand, arm, leg, even brain—is better developed than the other. But my left hand now clutches a leash and harness and has become sensitive to every movement, every distraction, every thought that passes through the mind of my dog. My whole body has been extended to include his. When as a team we negotiate the tumult of the busy world, at our best we move and act as a single unit.