A Matter of Dignity

by Andrew Potok

  I ask Ted about the dramas that must have accompanied the race with other groups attempting to solve the screen-reading problems.

  “We were very concerned with beating a few key competitors to the market,” he says. They scheduled a dealer meeting to show and release their product for the end of January 1995 though they hadn't solved many of the problems. There was an awful lot to do between September and January. They had to make an enormous number of choices about what to include, what to leave out. Nevertheless, they managed to release it in mid-January. “A lot of things that could have gone wrong didn't,” Ted says. “It wasn't perfect but it was pretty damn good. Still, we were scared.”

  The trade show managers put all the developers of all the screen-reading programs on stage, six or seven of them with their products running, in front of a panel of judges and an audience. Then they instructed each of them to run Microsoft Word, open certain files, open a particular dialogue and load a different file. One at a time, each presenter stood behind his computer and tried to do what was asked. The computer talked, doing its thing, and the judges judged. “A pretty neat idea,” Ted says.

  “Things were going great for us but then this remarkably clever blind kid went up there representing another company. He really knew his stuff, outsmarted and hoodwinked the judges and audience by making them believe his product could do things it actually couldn't do. It was a terrific show. I really got off on that kid. Anyway, when he was finished, everyone cheered and his company won based on the kid's creativity. I realized what had happened but I also knew I had to be a gracious loser.”

  Six months later, the judges set a much more difficult task and Henter-Joyce did very well. It put them on the map. Technically speaking, JAWS could do more things, read more screens, get more information and present it to the user better than any of their competitors.

  Ted gets up to get us another beer. In his home, he walks carefully but gracefully, not using his dog Lori. “I used to do a lot of traveling,” he says when he gets back, “just me and my dog. A lot of trade shows, that kind of thing. Now that my company is big I do less. Other people do most of the traveling for me.”

  “Why did JAWS make it and the others not?” I ask.“There are a lot of smart programmers in the world. Were you simply smarter?”

  “Our commitment was urgent. Glen and I are blind. We needed a good screen reader. A couple of other guys on our programming staff were blind. That made a huge difference. We were driven. Most of our competition had sighted guys running their companies. Being blind, we have a very real commitment to making this stuff work and work correctly. We are the designer and programmer and user all in one.”

  “What a lot of stress. How did you survive it?”

  “It wasn't easy. I wasn't sleeping, but then I always have a hard time sleeping, which has to do with being totally blind, not knowing the difference between night and day. My body's rhythms don't work that well. Blindness definitely adds to the stress.”

  “I also used to wonder why I was so tired by early afternoon every single day, until I figured out that blindness itself is exhausting.”

  “You said it. It takes a lot to remember where you are and where everything else is in relation to you. You have to do this every minute of the day. That takes a lot of organization and orientation skills.”

  Ted is a sportsman. As Geoff Howard had mentioned, he is a great water-skier as well as a very good downhill one. In 1991, Ted was the number one U.S. blind water-skier, winning seven national championships. Then there are those ocean-to-ocean races in the Panama Canal. But it isn't just Ted. The whole family thrives on competition.

  At dinner, on the evening before his daughter Elizabeth's go-cart race, as we are finishing our locally fished amberjack, the telephone rings. Mel answers and shrieks with delight. Elizabeth's high school basketball team has just won their division in the state championships in Miami and she, a substitute point guard, scored five points. Emily, the eighteen-year-old, was still at the state fair attempting to qualify in the cheer-leading competitions. Earlier, eight-year-old Amber told me about a string of horseback-riding ribbons in her room. There are black and brown belts from every conceivable martial art, trophies, plaques and certificates. It's hard to keep track of who got what.

  The next day, a Saturday, Tobias and I meet Ted and his family at the Sunshine Speedway, where Elizabeth is about to participate in the restricted two-stroke light category of go-carts. “This is how I started my racing career,” Ted tells me as Elizabeth, in her rose-colored space suit and helmet, gets into a spiffy Yamaha, kept in tip-top shape by Ted and an old racing buddy. Tinkering with last-minute computer checkouts of Elizabeth's go-cart, Ted tells me that the tension and excitement of the track sometimes erupt into unpleasantness, competitive fathers arguing and threatening. “Once,” Ted tells me, “one of these dads screamed at his son for being beaten by a girl, my daughter. When the kid lost to my Elizabeth a second time, they never came back to this track. I understand feelings like that.”

  Suddenly we are all running for the grandstands as Elizabeth drives her preparatory laps. As the checkered flag is lowered, Elizabeth's cart is bumped and she does a full spin. It costs her the race.

  When Ted was a kid, he loved go-carts. He raced them expertly until he was old enough to graduate into the motorcycles that became his life. “I had gone to college with the express purpose of designing racing machines,” he says. “My plans were to race for maybe eight years, then be part of some racing-connected business.” He was in the process of climbing his way to the very top of his profession when he had his terrible accident.

  Sitting on lawn chairs, with the drone of the afternoon's contestants behind us, I remark that he excels in many different things. “If someone had just met you, how would you define yourself?”

  “Above all, I'm an entrepreneur,” he says. “That's what I'm best at, not the smartest computer scientist by far. As a matter of fact, even though I was totally involved with the engineering of JAWS, other people did the real front-line work. I'm not the smartest businessman or business manager either, nor the marketer or salesperson. But I've been willing to take the risks essential to being an entrepreneur. To be a good entrepreneur you've got to know a little about all these things but you have to have a good feel for the market, what will sell, what folks will buy, what they need.”

  “Even though your motivation was largely money, aren't you proud of the effect your company has had on blind people?”

  “Sure I am. I do think of the opportunities that blind people now have because of the effort we put into this. I'm sure all this would have happened if it wasn't us, but it wouldn't have happened as quickly. Our competitors have pushed us and we have pushed them. I'm proud of this, but we were neither the first nor the only. We didn't conceive of the idea. Others did. We learned from them and took it a step further.”

  On my last day of Florida blue skies and bright sunlight, I stop off again at the Henter-Joyce building, trimmed, I am told, in tropical teal, surrounded by pink hibiscus and bright red bot-tlebrush trees. Inside, Tobias's tail wags furiously. Many of the offices are occupied by employees with guide dogs. Chris, the company's development manager, is a fairly recent import from Cambridge, Massachusetts, which he wistfully remembers as the intellectual center of the universe. He is learning to enjoy the pleasures of sun and water and the malls of St. Petersburg. “We're not enabling anybody,” he says, proud of the work they are doing. Chris is blind from retinitis pigmentosa. “With JAWS, we provide a tool,” he says. “It's like putting a saw out there. A saw doesn't give a sighted person permission to cut down a tree. It's what is used to cut it down. The cutting is the important part. We don't heal. We're not do-gooders. We're very much a business, not a charity.”

  “I'll say,” I tell him. “JAWS for Windows is very pricey. You certainly don't give it away.”

  “The company gets involved in charitable issues but we charge what the market will bear. What we mak
e is a really valuable tool, not only to the larger blind community but to ourselves, half the company. JAWS gives us access to our work. It provides a tool which the rest of us transform into an education, into jobs, into poetry.”

  Back in Ted's office, I ask about Henter-Joyce's future plans. “We need to be broader,” he says, “probably to merge with a bigger company, to have a bigger product line. In the blindness business we're one of the biggest, but if a big company bought us we'd benefit from a much larger sales, advertising and marketing force.

  “Over half of our more than fifty employees are blind. The tech support is all blind, half the developers, most of the salespeople. We work on translating new programs and we work on making core, basic improvements in the ones we already have. It took about two years in all to develop the original JAWS for Windows, then we just kept adding features to it. It never ends.”

  Henter-Joyce commands the majority of the computer accessibility market, its sales larger than those of all its competitors put together. JAWS exists in ten languages, with the European market accounting for a quarter of its total business of more than 25,000 users. In some years, the company has grown by as much as 70 percent.

  A few months after my visit to St. Petersburg, I call Eric Damery, the Henter-Joyce sales manager whose excitement about the possibility of eight thousand good jobs for blind people underscored the importance of the enterprise beyond personal use. “Whatever happened to the UPS project?” I ask him.

  “It got snagged with red tape within UPS,” Eric says. “The way things stand, a lot of these companies have huge turnovers among their sighted computer workers. If we can set this software up properly, if it's perfectly customized so that their programs speak effectively, and if a company's training program to accommodate blind individuals is carefully crafted, then it'll work. Once they begin hiring blind people, those people have to be more productive than the sighted employees to be able to advance in these positions.”

  It could go either way, I am thinking. I can imagine a happy blind workforce, productive, satisfied, taking home good wages, but I can also see the potential for the old dismal sheltered workshops, scrambling for piecework, brooms and baskets replaced by the monotony of tracing packages. This is, of course, a familiar issue with minorities, who need to be better than the mainstream, who have to work harder, be more grateful. Perhaps this is the only way into the mainstream and perhaps even the best-intentioned openness works only in times of near-full employment and affluence.

  As it turned out, the UPS project didn't materialize, but similar agreements with Northwest Airlines and Marriott World Wide Reservations did, both organizations having contracted with Henter-Joyce and its dealers to do scripting for their internal applications. Both organizations have many blind employees using JAWS for Windows.

  JAWS for Windows was given a special award by the Smithsonian National Museum of American History, welcoming JAWS into the permanent research collection on information.

  A year after my visit to St. Petersburg, Ted Henter and his company merged with Blazie Engineering of Maryland, the leading U.S. manufacturer of braille hardware devices, a company owned by his old friend Dean Blazie. They formed Freedom Scientific, Inc., a new company dedicated to offering a broad line of assistive technology products for people with sensory impairments and learning disabilities. Henter-Joyce and Blazie Engineering plan to continue designing, developing and manufacturing their respective product lines in separate business-development units, but their sales, marketing, order entry and administrative functions will be combined.

  “Dean Blazie was the man who, fifteen years ago, gave me my start in business,” Ted says, “and we have been close friends ever since. Our teams have worked well together on numerous joint efforts over the past several years, and so we've often thought it would be a natural alliance to put our two companies together, but, until now, both of us lacked the necessary capital to make it work.”

  Shortly after this merger, Freedom Scientific acquired the business operations and product lines of Arkenstone, Inc., the leading maker of reading systems for people who are blind or visually impaired. When loaded into a personal computer, Arkenstone's Open Book system reads aloud any scanned book or other printed material.

  For the first time in my nearly thirty years of listening to taped books, I can now take any book out of the library or buy one from my local bookstore, no longer dependent on whatever books others have decided to tape.

  “The aim of Freedom Scientific,” Ted says, “is to become the global market leader in the field of assistive technology.”

  “Things are going pretty damn well for you,” I remark on the phone.

  “Never better,” he says.

  SCHOLARS

  ADRIENNE ASCH

  professor oj bioethics

  ROSEMARIE GARLAND THOMSON

  professor of English

  PAUL K. LONGMORE

  professor of history

  PROLOGUE

  I met disability scholars for the first time at a conference of the Society for Disability Studies. “SDS, our initials, are no coincidence,” someone told me, referring to the Students for a Democratic Society of the 1960s. From my first encounter with the politics of this disability-oriented SDS, I felt very much at home.

  “Disability studies?” a friend of mine, himself an academician, asked when I returned to Vermont. He thought he'd misheard. He tried saying it again. “Have they run out of categories of study?” he snickered, needing to tweak this thing further. “How about pedophile studies?”

  In fact, scholars from all over the world had shown up. Some were disabled, some not. There were people from the arts and from the humanities, from English departments, from American studies, from philosophy, sociology, anthropology, law, political science and history, and though disability studies are not about cures, treatment, rehabilitation or the high-tech engineering of gene recognition, the disciplines of medicine, public health and rehabilitation were also represented. The papers presented were on views of the disabled in literature, film, the visual arts, on eugenics and euthanasia, on culture and identity, on epistemology, immigration laws, civil rights, accessibility, employment.

  Throughout history, disability has been seen through varying lenses. Aside from the often sentimentalized mythology of disability stars, whatever history exists has come not from the marginalized disabled themselves but from ablebod-ied observers, anthropologists colonizing an exotic land.

  Instead of viewing disability as a problem that needs to be fixed, disability-studies scholars are focusing on its social and cultural context. “Our society is based on the concept that everybody has to be normal,” one of them said. “It's a view that defines disability not as a physical defect inherent in bodies, but rather as a way of interpreting human differences. After all, gender is not simply a matter of genitals. So disability is a way of thinking about the nature of bodies, rather than concentrating on what is wrong with bodies.”

  At the SDS conference, some of the audience, as well as some of the presenters on the many different panels, were in wheelchairs or wearing leg braces, were quads and partial quads, some mowed down by birth defect or accident or chronic illness, others with attendants standing by their sides, some talking with great difficulty, some fluttering spastically There were the deaf focusing on the signers, the blind listening intently. This was my community and it moved me deeply. As a matter of fact, it was exhilarating.

  In the mix, there were scholars pure and simple, clarifying distinctions, carving out turf, but many of them were also the warriors of this relatively new movement that had started with a clamor for independent living in the 1960s, continued in the ‘70s with demonstrations that resulted in the implementation of otherwise gutless accessibility statutes, followed up, year after year, by brave actions that led eventually to the passage of the Americans with Disabilities Act. “Many of us were academics to begin with,” a disability scholar said. “As activism heated up, we beca
me activists. And now, with activism firmly embedded, we're back to the academy again.”

  Though science and technology are often revered because we expect them to lead us to better lives, the presence of the disabled in society reminds us not only that precious resources need to be shared but that science itself has limitations. An extreme belief in scientists and physicians not only as surgical or pharmacological virtuosi but as the bearers of wisdom, the adjudicators of life, has penetrated deeply into our society.

  Though the liberally praised human genome project holds some promise for important medical research, it also promotes our love affair with the image of ourselves as perfectly beautiful, healthy and brilliant, the tallest, blondest, whitest cancer-resistant athletes, the kind of people we have always wanted to be. Even though very few in this academic disability community idolize medicine and its drive to pathologize the human condition, it's hard to blame those who do. “The problem with people like the severely disabled matinee idol, Christopher Reeve, putting his celebrity in the service of cure rather than care,” another scholar said, “is that he's not only highly visible but that he unfortunately echoes the wild expectations of the population. It's troubling because this attitude seems to dominate public discourse about what the response to disabilities should be.”

  When disability, as race and gender before it, is examined and illuminated, it can be seen beyond the personal misfortune it is often claimed to be. If it is perceived as deviant, compared to some prized norm arising from cultural expectations of how humans should look and act, it overwhelms a person's other, less visible aspects.

  This is a lot more than an academic issue. It follows me around as it does most visibly disabled people, in the way we are seen, in the ways that our complexity as humans is often overwhelmed by the facile, single-focus stereotype. In literature too, the disabled are not subjects of art but its occasions. They are on the margins of fiction, exotic and uncomplicated, Symbols and spectacles, eliciting responses, rhetorical effects, depending on disability's cultural resonance. As a rule, a few general strokes paint these characters, but blind is all you need to say and a host of images automatically comes up. Cultural assumptions fill in all the missing details.