A Matter of Dignity

by Andrew Potok

  “As amputees,” John says, “perhaps as all disabled people, we have to ask ourselves some crucial questions. Is the equipment we use intended to help our mobility or to hide our disability? Should we take risks, be models for others, an inspiration, or should we stay out of the way, try for invisibility? Should we demand our rights or accept the status quo? All these questions and a lot more become crucial when you are suddenly dealing with new limitations, but involvement with them tends, I think, to deepen our humanity.”

  When I visited Dave Loney's prosthetics shop a year after Danny's leg had been finished, the practice was prospering. Reimbursed primarily by Medicare, Dave was making some hundred prostheses a year. He was closer to arranging to contribute his work to needy people in the Third World and told me a story of one of his patients, an Indian man with an above-the-elbow arm amputation. The man had grown up in Singapore, moved to Canada, then come to Vermont. He had never felt the need for a prosthesis before.

  “Why now?” Dave asked him.

  “Ah,” the man said, “it is because I am going back to Singapore to start a new business and you know how they feel about amputations. If any part of your body is missing, they consider you an outcast, a beggar.”

  Dave fitted the man with a complex myoelectric arm and hand. Before returning to Asia, the man practiced for months with his new arm but its intended functioning proved to be extremely difficult for him. In Singapore, though, he wore the prosthesis for obvious reasons. As it turned out, his business venture failed, but, needing a job, he decided to spend his days traveling all over Asia speaking on behalf of amputees. He reported to Dave that not only was he changing Asian mind-sets about disability but was making good money doing it.

  “I'm constantly astonished by people's fear of amputees,” Dave says, “but I love this work. I love how quickly we can take a person who's been badly wounded and bring him back pretty close to where he was before.”

  JAWS

  TED HENTER

  computer engineer and entrepreneur

  PROLOGUE

  Even though I'm an anxious and naive user of computers, I can now, not seeing the screen, log on to the Internet every morning and have my computer read me whatever I want to read in the New York Times. It's only my technological inadequacy, not my lack of eyesight, that keeps me from going further, from doing absolutely anything a sighted user can do to find relevant texts, research material, games or chat rooms. But my technological ignorance runs deep. My understanding of even television or, for that matter, the telephone, is minimal.

  Nevertheless, for several years I've been using and taking for granted an earlier innovation, a more simply devised screen-reading computer whose voice reads the words that appear on the screen. Even that less complex technology had brought me into the mainstream in a way that had not been possible for blind people previously.

  I'm quite sure that were I totally sighted and writing, I would still be doing it by hand, preferring that more human pace, like the awareness of a heartbeat in music. Still, I was very curious to discover how all these technological wizardries had come to pass, who had made them happen, and how. On hearing about my fascination with this, a disability activist friend reminded me that the disability rights movement prefers universal to particular design. This was unknown to me as a burning issue and I asked her to explain.

  “How is this going to be used by the public at large?” she asked.

  “I don't know.” And I had no idea why she needed to know. Isn't it enough, I thought, that the program serves people who can't see?

  “Take curb cuts,” she said. My friend calls herself a quasi-quad, with limited use of her arms and hands. “People hated them at first but then they realized that they helped not just wheelchairs but strollers and just about everyone.”

  “It sure messed up the blind,” I told her.

  She paused for a moment. “How's that?” she asked.

  “It used to be easy for a cane to feel a high curb. And how is a dog supposed to figure out where to stop if a sidewalk blends directly into the street?”

  She let this pass and went on. “Take bathroom accessibility,” she said. “It's for me, for my needs, for wheelchairs, but we can torque that idea into something called universal because in fact, everyone likes the bigger stalls. They can put their packages down or bring in a stroller or make it easier for older people or whatever.”

  “That's true.”

  “There are situations that are uniquely universal,” she continued, “others that aren't. What I dislike is the idea that something is done solely because disabled people need special things. It's just too reminiscent of the old-style thinking about disability in society. It just isn't appealing when thinking of long-term movement goals.”

  “Aha,” I said, still not totally convinced.

  “The more universal something is, the more it promotes the idea of diversity and inclusion. The idea of a screen reader or an accessible bathroom has more to do with how we think about what humans as a large group with extraordinary physical differences need in a highly developed world.”

  I liked her certainty and began to see the validity of her point of view. I did recognize a healthy reciprocity between innovations developed for special needs and those that are useful to the mainstream. Just about anyone can have his e-mail messages read aloud by a computer voice as he drives his car, but this luxury comes as a result of blindness technology being adapted for sighted people. When the technology existed solely for the relatively small population of the blind, its price was astronomical. Since its development for more general use, the price has diminished considerably. A lot of techniques and equipment, some high-tech, some entirely mundane, filter down from their original uses. I read somewhere that carbon paper was originally invented for the use of a blind person who from that moment on would not have to worry if his or her fountain pen had ink, but its utilization by office workers turned out to be a noteworthy time-saving device.

  Brilliant new technology is useful for some things, superfluous and useless for others. Screen-reading programs are irrelevant to the vast majority of the world's population with no access to computers. In some situations, sitting on a scooter board on wheels is preferable to the mechanized wheelchair, which is useless to those of the world's nonwalking population whose environments are sandy or muddy, or who, because of unusual circumstances, prefer crawling, as on the earthen floors of African huts.

  Not only is advanced technology not always appropriate for cultural or geographical reasons, it sometimes also violates the “less is more” maxim, where the conservation of resources or lack of funds requires other imaginative solutions.

  Alex Truesdell has for years made assistive devices, such as specialized chairs for severely disabled infants and children, out of cardboard, papier-maché and glue. She plies her trade in New York as well as India and portions of South America. “I brought no tools or other equipment when I last went to Colombia,” she says. “I had to figure out how to be resourceful. In considering their children, no one there thinks of things like developmental scales or tests. It's very much kids first, unlike here, where equipment and programming often smother the kid. When working with multiple handicaps, you have to adapt everything that's manufactured. You quickly learn that handmade is good. This teaches you that a solution can always be imagined and crafted, even by the totally unskilled. It may not be slick and shiny and sexy but it can work really well.”

  Here in America, just as access to print through braille or computer voice is essential for a blind person hungry for information, so are low-tech solutions, certainly not excluding the articulate human voice describing the visual world. Going to a museum can still be an immense pleasure if the person I'm with is an imaginative, informed talker.

  Though hardly a technological breakthrough, descriptive videos are slowly being introduced to large-market television programs and some movie houses. In them, highly visual cinematic art is brilliantly narrated, filling the
spaces between onscreen talk with a density of perfectly chosen adjectives and adverbs, expertly describing gestures, facial expressions, erotic activity and landscape. It's a labor-intensive, low-tech delight.

  Retinitis pigmentosa, an inherited disease of the retina, has been picking away at my eyesight for many years. How actual sight is affected depends on the location of the dying rods and cones, at the periphery or in or near the center, but whatever the momentary configuration of the loss, the useful portion of the retina is constantly diminishing. Thus, just when I have come to terms with the vision I have left, the dying process continues and a new period of adjustment begins. The technology of print access seems to have kept pace for almost the entire period of my most difficult losses, and, over the last fifteen years, my friend Geoff Howard, a rehabilitation technician, has been installing ever more sophisticated equipment into and around my computer. He has introduced me to closed-circuit TV enlarging systems, then to computer magnification and, finally, to screen-reading programs.

  Before the advent of Windows and the Internet, the technology of a computer's reading aloud whatever text appeared on the screen was impressive enough. But the injection of a mouse clicking on an icon somewhere in the vast desert of the screen made the translation from screen to voice that much more difficult, and nearly put blind people out of business after they had only recently been enabled to participate on a par with sighted computer users.

  Many companies took on this challenge, and in 1995 the first crude graphics-reading systems came to the market. A few years later, as Geoff was training me to use a program called JAWS for Windows, he mentioned that he had just seen the man who created it on television. “The guy's blind himself,” Geoff said. This got my attention. “And apparently a great water skier,” he added. Though I've never been particularly interested in the exploits of the superblind, who tend to diminish the importance of the modest nature of most of our lives, my curiosity was piqued by Ted Henter. Was he on a mission to save the world? To make money? How did he do it anyway? Considering my technological illiteracy, I didn't have a notion how anyone, with or without sight, could solve the abstruse codes and symbols of computer language.

  On the phone, Ted Henter seemed modest but self-assured. He is the founder and CEO of Henter-Joyce, a multimillion-dollar company whose only purpose from its beginnings in the late 1980s has been computer accessibility for the blind. He was quick to tell me that he doesn't dwell on his disability. “I got over feeling sorry for myself in ten minutes,” he said, which made me even more eager to find out who this man was. Indeed, blindness and most other disabilities are not the end of the world, but which of us does not awaken at three in the morning, railing against the unfairness of it all? Getting over this makes sense, for not getting over it is as stupid as railing against death. On the other hand, there can sometimes be poetry in the railing.

  I was soon to find out that, as upbeat and successful as Ted Henter is, he is a complicated man. Everything in his life has been a mission, and blindness was not about to drive him off course, nor intense competition, nor uncertainty. He's a brilliant entrepreneur whose significant engineering skills and fierce competitiveness, as well as his nagging personal needs as a blind computer user, drove him and his blind buddies to beat the odds in being the first to emerge from the bloody dogfights with the other companies racing to come up with this badly needed technology.

  JAWS

  While Ted Henter is held up in a business meeting, I drop in on Eric Damery, the vice president of Henter-Joyce. One of a handful of sighted managers in the company he is settled in a pleasant, sunny office decorated with colorful wall hangings and framed photographs. Many of the other offices at Henter-Joyce are occupied by blind workers who are somewhat less interested in dolling up their environment. As I walk in, Eric is putting down the telephone. He punches a fist into his open palm. “Yes!” he says exuberantly. “Yes!” He springs up from his chair to pace. “I've been talking with a local UPS manager,” he says. “We've been trying to access their computer programs with our screen reader and it's beginning to look great. UPS has ten major facilities nationwide with some eight hundred computer jobs in each. If we're successful, that translates into eight thousand jobs for blind people. It's a great opportunity.”

  Until JAWS for Windows became available in 1995, screen readers deciphered only text. The challenge was translating the icons and graphics of new, popular programs like Windows into speech. Without it, blind people were facing massive layoffs from well-paid, decent employment.

  In the Windows environment, though everything starts out as text, as was the case before, by the time it reaches the screen it is no longer text. It's graphics on an all-over field that depends on the visual targeting of a mouse. In word-processing programs based on DOS, by contrast, there is a grid that is consistent with every program. Also with DOS, only one program can be open at a time, and it takes over the entire screen. With Windows there may be multiple simultaneous programs, all sharing one screen. While being able to use multiple programs was a benefit for many users, it created a nightmare for nonvisual access because it became almost impossible to navigate through all those screen layers. It was the equivalent of a sighted person being told to find a small object in a totally dark room.

  Ted Henter's secretary comes into Eric's office to fetch me. She walks Tobias and me down a long hall and through a small kitchen where some of Henter-Joyce's more than fifty employees fix their lunches. A microwave oven is talking. “You have set the timer at two minutes,” it says as one of the programmers grabs a cookie from the toothy mouth of a ceramic shark whose flippers clutch a half-devoured surfboard. Even though the JAWS name has nothing to do with sharks, standing rather for Job Accessibility With Speech, the company has adopted the shark motif throughout the building. It is everywhere. A shark mural, I am told, greets us in the entrance lobby, and the farther in we go the more sharks we meet: cookie-jar sharks, candy dishes, toilet-paper holders.

  The walls of Ted Henter's office are full of his early patents, his multiple awards and certificates of service, photographs of his daughters in their various sports uniforms, of Ted and his wife Mel slalom-skiing on water and on snow. Ted tells me that he's particularly proud of a photograph of himself standing with six Navy SEALs beside a dugout canoe.

  “From the early sixties when I was a Boy Scout in the Panama Canal Zone,” he says, “I participated in this ocean to-ocean canoe race. It's really neat, paddling through the locks of the canal next to huge ships.”

  “How did this one come about?” I ask him.

  “A couple of years ago, those six Navy SEALs, a bunch of really buffed guys, needed a seventh for their canoe. Someone told them about me, a middle-aged blind guy, and they couldn't believe it.” He laughs. “They were stuck so they took me.”

  “How did you do?”

  “Well, we made it. Actually I kept up with them pretty well and they honored me by brailling Slave Galley, the name of the boat, on its side.”

  Ted had just recently returned from this year's race. “Parts of the course are really beautiful,” he says, “but Panama is no longer what it used to be. Once, it was like small-town America, everything orderly and pristine, now it's a mess.” Ted was with friends the whole time so he had only his cane with him, leaving his guide dog Lori at home.

  “We were staying on the Pacific side of the canal so we loaded the boat on a trailer and drove across. I showed my friends the terrific sites, like the deepest cut from about five hundred feet high over the lock areas. There's a great view from up there.”

  Ted, like me, relishes his visual descriptions and judgments. Our unavoidable visual references come from our old sighted lives and emerge, irrepressibly, through memory and imagination.

  “There were forty-two boats in the race,” Ted says. “Plenty of reporters, plenty of old friends, a great sight. The weather was fine but real windy and rough, the wind blowing right off the ocean. Coming around the pier into the c
anal, quite a few boats swamped, blown over to the sandbars where the waves were even higher.

  “I rowed up front, setting the pace. The others looked at me and we'd do about one stroke every couple of seconds, switch sides every fifteen or twenty strokes. It was like running a marathon, except that we had no practice at all. The race was divided into several grueling stages over a period of three days. Overall, I think we came in fifth. I thought we'd do better, but that didn't really matter. We had the best time.”

  On the day in the mid-1970s that changed his life, Ted had been at the Brant's Hedge motorcycle racetrack south of London all day, having just arrived from a race in Venezuela where he placed eighth. Just before that, he'd come in fourth in Daytona. He was known in the motorcycle world but he wondered about his future. His passion for racing conflicted with his marriage and, being twenty-seven, he felt he didn't have a lot of time left to race.

  “It was the beginning of the European championship season,” he now tells me. “I had never been in England before, I didn't have a whole lot of support and I was working on a shoestring budget. I had a tough road ahead.” Apprehensive about the whole enterprise, he nevertheless felt destined to keep doing it. “That day, I was preoccupied with the competition, with who could help, with who the important people were. From England I was ready to travel to Spain for the first race of my European tour.