PUBLICATION DATE Tuesday. May 31, 1994
EDITION NASSAU AND SUFFOLK
SECTION HEALTH & DISCOVERY

PEOPLE WHO HAVE DISABILITIES ARE CONNECTING VIA JOBS, SCHOOLS AND EACH OTHER BYLINE By Joshua Quittner LENGTH 273 Lines (c) Newsday Permission to post to e-mail lists on non-profit systems granted.

THE LIGHTS ARE OFF in the Rochester Institute of Technology office where Norman Coombs sits listening to his personal computer. A blur of noise whirs from a cigarette-box-sized deck stuck to the side of his computer screen. The deck, a Verbette Mark I Speech Synthesizer, is reading Coombs^ electronic mail aloud, at a rapid 450 words per minute. There's e-mail from Bob Zenhausern, a psychologist at St. John's University in Queens whose life's work has been getting people with disabilities to connect online; and Sheila Rosenberg, who teaches the use of computer networks to Long Island schoolchildren who have autism, Tourette's syndrome or cerebral palsy; and Robert Ambrose of Manhattan, a volunteer trying to line up refurbished computers and Internet-access accounts for people who might otherwise be isolated at home. Sitting in the half-light with Coombs, a sighted visitor might feel disoriented as the words trill out of the speech synthesizer. But to Coombs, who has been blind since age 9, it feels like speed reading. "I'd really like it to go faster," he said. "That way I could get more work done." It's an odd thought, Coombs getting more work done. Despite being blind, the 62-year-old history professor teaches a full course load at RIT. But even that pales next to the work he's doing in cyberspace at the confluence of 15,000 intertwined computer networks called the Internet. There, Coombs is chairman of Project EASI (Equal Access to Software and Information) that's leading the fight to get people with disabilities online. In cyberspace, Coombs - and Zenhausern and Rosenberg and Ambrose and a few others - are at the forefront of a movement that is empowering people with disabilities by connecting them to each other and the world throughcomputer networks. The online world can be many things to many people, but for someone who is blind or deaf or mobility-impaired, the Communications Revolution is truly liberating. Experts say that people with disabilities, who tend through necessity to be early adopters of technology anyway, are now moving into the world of computer networks with unusual haste, using such things as speech synthesizers, puff-and-sip straws connected to pointing devices that allow them to pick out letters on a computer screen, or mechanical switches attached to knees or elbows. "There is not one thing that has happened to this population that is more significant than the electronic highway. It is for us like the discovery of the wheel," said Dick Banks, a blind "adaptive technologist" at the University of Wisconsin who helps people with disabilities get online. It's difficult to quantify how many disabled people are using the Internet, but experts agree the number is burgeoning as people with disabilities go online to connect to schools and jobs, and to network with others in similar situations. Sightless people, for instance, can, for the first time, read a newspaper on the day it was published, rather than wait for a Braille version to arrive a week later. Deaf people can talk with anyone, without the need for a human interpreter. And the homebound can be freed from isolation and loneliness. This new emphasis - spurred by the relative inexpensiveness of the new technology - comes at a key time. In July, the 2-year-old Americans With Disabilities Act will be extended to companies that employ as few as 15 people, ensuring that they make reasonable accommodations (that might include working part or all of the day from home) for people with disabilities. Randy Horwitz, a blind 18-year-old computer science student at Rochester, found the Internet earlier this year after reading a mention of it in a Braille version of Cliff Stoll's book, "The Cuckoo's Egg." "The Internet makes everything so accessible for us," he said, explaining that he uses it to talk with friends at other universities. To do this, he relies on two special tools: a voice synthesizer that reads information off his screen and a special pad he can place his hands over that spells out in Braille, one line at a time, the characters on his screen. The second device, he said, has allowed him to learn character-critical computer programing. Mainly, though, he said he likes to tap into Usenet, a collection of more than 4,000 special-interest discussion groups available to most Internet users. "I hate to talk about frivolous stuff, but they even post basketball box scores there," he said, admitting to being a big fan of Syracuse University. "I'd never seen box scores before." "I don't know what I'd do without this," said Peter Boulay of his online life. "I think I'd be a totally different person without these connections. I'd be bored." For Boulay, a 24-year-old double amputee, "boredom" can lead to alcoholism and despair, he said. In addition to being legless, Boulay was born with only one finger on each hand. That's enough to type on a computer keyboard, something that Boulay does for up to four hours each day. "I type faster than most people with ten fingers," he says. The connections made in the virtual world have helped Boulay cope with the physical world. Now, he's completing an undergraduate degree and working toward a master's degree in social work at Rochester. Boulay said he gets about 200 pieces of e-mail each day, most from special-interest lists devoted to disability issues. One list, for instance, is concerned with ramifications of the Disabilities Act. Boulay, who has plenty of friends in the physical world and is active in a bowling league, also entertains himself online, playing an adventure game called Star Game. In the virtual world that Star Game players create, a la Dungeons & Dragons, he's Lieutenant Commander Boulay, "6-foot-5 inches tall, 240 pounds, blond hair, ice-blue eyes. A big boy, a very big boy and if anyone stands in his way for too long, they don't stay there," Boulay said. "This is one major advantage of this technology: Physical impairments don't come into play and can be put out of mind, at least temporarily," Chris Bell wrote in an e-mail interview recently. "I firmly believe that computer communications, along with the continuing abilities of writing and synthesized speech that computer technology provides, is a vital opportunity to extend lives otherwise swamped by frustration and loss." Bell, 41, of Aurora, Canada, was diagnosed with amyotrophic lateral sclerosis (ALS), or Lou Gehrig's disease, three years ago. Since then, he has lost most of his ability to speak and type. But using a special program on his computer that projects a standard QWERTY keyboard in a window on his screen, Bell is able to effectively communicate. WiVik 2, a software program, uses a feature known as predictive spelling; Bell begins by holding a computer mouse in his hand and selecting letters displayed on the screen. As he slowly begins forming a word, WiVik 2 helps him speed up by guessing which word he might be forming, displaying the five most likely words in a small window. The program also adds "smart punctuation," putting spaces, commas and periods between words where appropriate. "I'm convinced this technology can and will extend lives of folks battling life-threatening illnesses such as ALS," Bell wrote. "Without an ability to continue meaningful output, life's purpose would quickly erode, creating melancholy and despair." At the same time, though, some advocates remain cautious, warning that information technology can be misused, as well, neatly cutting off disabled people from the rest of the world. "Many people in the disability movement are afraid that the technology will be used to isolate disabled people," said Deborah Kaplan, vice president of the World Institute on Disability, in Oakland, Calif. Kaplan also sits on the White House's National Information Infrastructure Task Force, which is examining the issues of access and affordability as the national information superhighway is built. "Technology could be a tool for sticking people in their homes, both in terms of distance learning and employment," Kaplan said. "For some people that may be a necessity - they really can't leave their homes - but that's really such a small part of the population that it frightens us." Instead, she said, online communications could be used to give people with disabilities greater flexibility. A disabled person who takes a particularly long time to get ready for work, for instance, could begin his or her work day at home, on a computer. Another cruel irony is that as the Internet and commercial online services become easier to use for most people, they become harder to use for other segments of the population. For instance, the trend among online services to make everything more "user friendly" by allowing people to navigate by clicking on pictures and icons, rebounds against blind people. This is particularly disturbing to people like Horwitz, who notes that one of the Internet's most explosive new applications is a program called Mosaic, which puts a pretty point-and-click, picture-based menu on one's computer screen. "At the moment, Mosaic is pretty worthless for blind people," Horwitz said. "I'm worried that as everybody is speeding forward, they're forgetting about us." Tom Kalil, director of the National Economic Council, which is helping direct the White House vision of the national information superhighway, said that discussions were currently under way with "the National Science Foundation and folks at the National Center for Supercomputer Applications [which developed Mosaic] and some other folks in the research community about a universal design version of Mosaic that would make it accessible to as many people as possible." Kalil said that since so many government agencies are already using Mosaic as a way of disseminating everything from NASA satellite pictures to Department of Education data, it has become imperative to broaden Mosaic's accessibility. In Freeport, Robert Mauro lies down on a desk next to his computer so he can type more comfortably. Mauro, whose bout with polio left him using a wheelchair and on a respirator, is the moderator of an e-mail list called Mobility-L, which is one of the e-mail lists that Boulay gets. Scoliosis makes it hard for Mauro to sit upright for more than a half hour, but lying down next to the keyboard, "I can type all day," he said. Mauro has been active in getting disabled people online ever since he got his first modem in 1985. "I got involved with different [electronic] bulletin boards and commercial services like CompuServe," he said. "I wasn't interested in games or downloading software, just communicating with people." "For someone like myself whose mobility is very limited, it's a great way to meet people," said Mauro, 47. "I sometimes get forty letters a day that I respond to. If I were doing that with first-class mail, you know how much that would cost?" Beyond the social interaction, Mauro found that his online connections helped him write and publish two books about online communicating and the disabled. "The first book, I wrote with a co-writer, a psychologist with a spinal-cord injury in Portland, Oregon," he said. "We communicated back and forth over the computer." Mauro was able to link into online card catalogs at the Library of Congress, the New York Public Library and a library at St. John's University, and he compiled 67 pages of information, which he relayed to his partner in Oregon. He helped write a draft of the book, which his partner supplemented, all by passing information over their computers. "Without the computer, for me to go to the library, forget it," he said. "No way would my little library have this information. I was able to do hours of research from home." In 1992, Mauro met at Grumman with a number of people, including a St. John's University psychologist, Bob Zenhausern, who were interested in connecting other disabled people online. Mobility-L, the mailing list, was set up on a St. John's computer and now includes 132 people in the United States, Japan, Hong Kong, Australia and eight other countries. It was just one of perhaps 50 mailing lists that Zenhausern, who is not disabled, has helped to set up so far. There's a list for people with disabilities interested in finding employment; a list that deals with alternative teaching methods to help people with disabilities; Big Computer Pals, which lines up blind children with blind college students; a traumatic brain injury support group; a list for people who have chronic fatigue syndrome and cerebral palsy and a list for parents of children who have autism. Zenhausern is kind of the Johnny Appleseed of e-mail lists, sprinkling his ideas liberally across the Net and watching them grow. "I usually start the list, then find someone to take it over and manage it," he said. He also manages the university's Unibase system, which gives users easy telephone dial-up access to some of the most powerful tools on the Internet. Among other things, Unibase users can call St. John's computer, known as rdz (Zenhausern's initials), and log into Diversity University, a computer-simulated college campus where dozens of people can chat with each other and even attend classes in virtual classrooms. On a recent day, Zenhausern was in his virtual office at DU, when Jennifer Li electronically "dropped by." "Dr. Z, my account doesn't work. Did you fix it yet?" she asks, referring to an e-mail account that Zenhausern had set up for her. Jennifer's message scrolled across Zenhausern's screen. It was her first time on Diversity University after being led there by her teacher at South Woods Middle School in Syosset, Sheila Rosenberg. Jennifer, 13, who moved to Syosset with her family from Taiwan four years ago, faced a language barrier as well as physical disabilities that limit her ability to walk. Rosenberg specializes in working with disabled children, and taught herself how to navigate the Internet. After she began to learn her way around, she started exposing some of her students to it and quickly found that some children with disabilities blossomed when connected to the online world. "Jen is a very eager learner," Rosenberg said, recalling how the student quickly became attached to the computer in class. "She'll push other kids away to get to the computer; her need to connect is so great." Recently, thanks to her work online, Jennifer was awarded her own laptop so she can connect from home. A more "traditional" approach to online education has been practiced by Coombs, a pioneer in the so-called "distance-learning" movement. Coombs, with another blind professor, Dick Banks, teaches a class in adaptive technologies. He also teaches African-American history, both online and off-line. Coombs^ best friend, an RIT psychology professor named Morton Isaacs, taught Coombs some basic programing on an Apple computer that Isaacs encouraged Coombs to get in 1982. "Gradually, I wrote a clunky word processing program that worked" with a crude speech synthesizer, Coombs recalled. Within a year, Coombs began exploring the online world as a forum for distance learning - using e-mail to lecture and stimulate discussions with students scattered around the world. "At the very beginning, a couple of deaf students got into the class, and I realized its potential for students with disabilities," he said. "One of the students was a girl who had lost her hearing as a young adult and as a result, didn't read lips and was poor at sight reading. For her, this was great." Now, his online classes are filled with disabled and non-disabled students alike. Coombs lost his sight as a young boy throwing sticks in a park. Until recently, he could still remember what colors looked like, although now images appear in shades of gray. His office is filled with sculptures that he makes, clay forms he shapes with his hands. He shows one to a visitor, a statue of two people huddled in an embrace. "You'll notice that neither person has arms," he pointed out. "I've always believed that you don't need arms to embrace." ***** LIFE AFTER CYBERJUNK A JUNKYARD of discarded technology surrounds Robert Ambrose: Burned-out computer monitors stacked like acrobats, one atop the other, ceiling to floor; dusty circuit boards and bug-eyed modems line bookshelves; cords splay out like robotic entrails. Sometimes, one person's junk is another's lifeline. "The old computers we're getting come from banks and brokerage houses - they're throwing them away," Ambrose said, shaking his head in amazement. "They don't know what to do with them. Vendors come in and pay them pennies on the dollar. Nobody wants them in this country - except for us. We want them. We need them." Ambrose is a full-time volunteer for The Enabling Support Foundation, a nonprofit group he started 18 months ago. He works in an office donated by the United Cerebal Palsy Foundation in midtown Manhattan. From there, he and other volunteers find, pick up and fix outdated and sometimes broken computers that large companies want to get rid of. The beauty of online communications is that the meanest equipment is enough; all a person needs to go online is a computer, a modem and a phone line. So far, Ambrose has helped place 50 computers with disabled people who would otherwise be unable to afford one; 100 people wait on a list for their turn. The foundation has also helped another 70 people learn how to use the Internet and is working on getting a $200,000 federal grant to broaden its efforts. By today's standards, the 11-year-old IBM XT computer is slow and limited. But Ambrose, who gave up a career as a jeweler to pursue this work, calls it "absolutely perfect for the people we're working with."

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