Fwd: Leveling the playing field for scientists with disabilities

From: Lloyd G. Rasmussen (lras@loc.gov)
Date: Mon Dec 14 1998 - 06:09:41 PST

This is long, but interesting.
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From: Kelly Ford <kford@TELEPORT.COM>
Date: Fri, 11 Dec 1998 17:26:00 -0800
Subject: Leveling the playing field for scientists with disabilities
My apologies for the missing ending of this article. The resource where I
obtained it seems to have cut out a small part of the article.


Science, Oct 2, 1998 v282 n5386 p36(2)

     Leveling the playing field for scientists with disabilities.
     (includes related information on aids for blind researchers)
     Constance Holden.

   Full Text: COPYRIGHT 1998 American Association for the Advancement of

   With help from new technologies and old-fashioned willpower,
   researchers with disabilities are making gains in the workplace

   DAVIS, CALIFORNIA--In a lecture to a packed auditorium here,
   biochemist Larry Hjelmeland is describing the bends and notches that
   give proteins their shapes. Behind him flash slides depicting fibroin,
   alpha keratin, and collagen; the cartoons aren't what these substances
   really look like, of course, but they help the mind develop a picture
   of how microscopic strings of amino acids link up to form fibrous
   proteins. Like his students, Hjelmeland, 50, can only imagine the
   molecular world, invisible to the naked eye. But unlike most people,
   he is forced to imagine the macroscopic world, too: the tendons, the
   creases of a smile, all the shapes formed by proteins. That's because
   Hjelmeland lost his eyesight 15 years ago.

   A generation ago, people who were blind, deaf, or wheelchair-bound
   faced long odds in climbing the science career ladder. But thanks to
   federal laws requiring accessible buildings and forbidding
   discrimination against people with disabilities, social values
   emphasizing "inclusion," and--most of all--the computer revolution, it
   is now possible for someone with almost any kind of impairment to
   communicate and acquire data. Indeed, a wealth' of new technologies,
   particularly those for blind people (see sidebar), are helping put
   scientists with disabilities on the same footing as their peers.
   "Technology has been opening up the world," says Larry Scadden, head
   of the Program for Persons With Disabilities at the National Science
   Foundation (NSF). "The greatest boon," says Scadden, who is blind, is
   "independent access to information."

   Only recently has NSF begun to track the number of people with
   disabilities who have chosen science as a career. In 1996, the agency
   estimated that 5% of the 3-million-strong science and engineering
   workforce--about 175,000 people, including 26,000 Ph.D.s--have
   "moderate to severe" disabilities. By far the most common are dyslexia
   and other learning disabilities, followed by speech problems--from a
   stutter to cerebral palsy. Orthopedic disabilities come next, then
   vision loss and hearing impairments. Still other people suffer from
   chronic diseases. Crippled by amyotrophic lateral sclerosis, or Lou
   Gehrig's disease, for example, astrophysicist Stephen Hawking of
   Cambridge University is confined to a wheelchair and speaks through a

   Behind the numbers are compelling stories about how individuals have
   leveraged high-tech advances--and their own determination--to become
   productive scientists. Hjelmeland was blinded by diabetic retinopathy,
   a breakdown of blood vessels supplying the retina, over a 9-month
   period in the early 1980s while a protein chemist at the National Eye
   Institute (NEI) in Bethesda, Maryland. "I thought it would be partial
   loss, but in the end I was left with absolutely nothing," he says. His
   first reaction, incredibly, was "excitement at facing a new
   challenge." That was followed by anger and depression. "It was
   terrible," he says. "I had very high expectations for my career at
   that point. Basically I felt it was all over."

   Fortunately, Hjelmeland's vision loss occurred just as screen
   readers--software that translates data on a monitor screen into
   audio--were becoming available. He says NEI offered to create a post
   for him, as he calls it, as "a minor luminary on how blind people use
   computers." Instead, he decided to try to make a go of it in academia
   even though, he says, "I had no sense that I was a salable commodity
   on the open job market." He won an NEI grant to study the cell biology
   of scar tissue formation on the retina and obtained a post as adjunct
   professor at the University of California (UC), Davis, a conveniently
   flat campus well known for supporting people with disabilities. "My
   family thought I was nuts" to turn down a comfy bureaucratic job at
   NEI, he says--especially as he was developing diabetic kidney disease
   and knew he would be needing a transplant (which he got in 1996). But
   his gamble paid off: Within 4 years he had won tenure and had secure
   funding for his eye disease research.

   Hjelmeland says it took about 5 years to make the
   transition--psychologically and logistically--to being sightless. The
   secret, he says, is "to redefine yourself" in light of your
   limitations "and be born as a new person with a new identity." On the
   whole, he considers himself lucky. "My story is a story of privilege.
   At every mm of the comer, I have received pretty massive support."

   Geerat Vermeij, on the other hand, never had to redefine himself.
   Blinded by glaucoma in early childhood, he has earned an international
   reputation at UC Davis for his work in a discipline that most people
   would assume requires a sharp eye: evolutionary biology. For Vermeij,
   however, a sharp eye depends on the eye of the beholder. He has done
   extensive fieldwork, using his fingers to trace the subtle
   evolutionary adaptations that show up in snail fossils over millions
   of years.

   Unlike Hjelmeland, Vermeij relies heavily on Braille, typing up
   detailed notes from papers read to him by his assistant or by his
   wife, Edith. Hundreds of tiny drawers in his office contain specimens,
   with a strip of stiff paper marked in Braille coiled around each.
   Vermeij also considers himself fortunate: He's doing exactly what he's
   always wanted to do and admits, he says, to being "surprised at how
   little problem I have had with [other] scientists" on account of his

   Others have faced greater obstacles. Jim Caldwell, an IBM engineer
   currently on loan to the St. David's Foundation in Austin, Texas, was
   badly burned, blinded, and paralyzed from the waist down in 1962 when
   a can of boat stove fuel being used in a backyard barbecue fire
   exploded. After the accident, Caldwell says, his doctors at the
   hospital "said I had no rehab potential." Prospective employers wrote
   him off, too. "I couldn't even get into an employer's office to talk
   about a job," he says. He finally landed in the Baltimore phone
   company as a computer programmer in 1966.

   Budding scientists get much more help these days with launching a
   career. Besides NSF's disabilities program, which promotes education
   for children and career development for adults, the American
   Association for the Advancement of Science (publisher of Science) has
   been serving as an information clearinghouse, as a resource for
   teachers, and as an advocate through its Project on Science,
   Technology, and Disability, started more than 20 years ago. Such
   programs have helped change attitudes in the scientific community.
   Rebecca Jackson, who lost the use of her legs after falling from a
   balcony in 1979, says that when she went to scientific meetings a
   decade ago, there were no services to accommodate disabilities. Now,
   says Jackson, an endocrinologist at Ohio State University in Columbus,
   "people call and ask if you have any special needs."

   Whereas ramps into a building are essential to wheelchair-bound
   scientists, on-ramps to the information highway have been key to
   keeping people with disabilities in science careers. Take NSF's
   Scadden, who went through school with the aid of a slate and stylus
   after losing his sight from a household accident at age 9. Now he has
   a panoply of technologies at his fingertips, including a computer with
   talking screen reader and a machine called "Reading Edge" that scans
   documents into his computer or reads them with a voice synthesizer. He
   takes notes with a "Braille Lite"--a portable device with a
   refreshable display into which he can type information in Braille and
   retrieve it in Braille or in a digital voice.

   Gadgets are also making life easier for Ken Barner, an assistant
   professor of engineering at the University of Delaware in Newark. A
   freak injury from diving into a pile of hay at a fraternity party in
   his freshman year left him paralyzed from the neck down in 1983. Now
   studying ways to form tactile representations of scientific concepts,
   Barner has mostly forsaken arduously pecking things out on a keyboard
   in favor of "Dragon Naturally Speaking," a computer program that
   recognizes his speech and turns it into writing.

   Hjelmeland says there's no way he could do his current job without
   such tools. "To me it was a no-brainer when I lost my eyesight" to go
   digital, he says. Without computers, he says, "I'd be dead in the
   water." Hjelmeland spends about half his day on the computer and the
   other half talking to people. Fortunately he has a "killer memory," as
   he has never learned Braille and relies only on prompts from a tape
   recorder when he lectures. He doesn't do hands-on work in the lab, but
   as colleague Claire Gelfman notes, "most professors are more involved
   in grant writing and mentoring students than doing the actual bench
   work." Working with a blind lab chief, she says, "requires you to be
   more descriptive when presenting data." However, Gelfman adds, "those
   of us who work with him do not see him as a disabled person at all."

   But there's no way Hjelmeland could keep up without help. He prefers
   to have papers read to him rather than scanned and spoken by machine.
   "My independence is not as important to me as getting the job done,"
   he says. Assistant Rosemary Motz guides him to appointments, sets up
   computer-based video projectors in class, and reads papers to him.

   Others with disabilities, however, are forced to give up
   long-cherished goals. After losing his eyesight to diabetes while in
   graduate school at the University of Chicago in 1981, Mark Dubnick had
   to abandon plans to do bench research as a mammalian cell culture
   geneticist. He retooled as a computer scientist at the National
   Institute of Neurological Disorders and Stroke in Bethesda, Maryland.
   But his heart is still in the lab.

   Karen Sadler also reluctantly let go of her dream. Sadler, who is
   deaf, went back to college at the age of 34 in 1990 to study
   neuroscience at the University of Pittsburgh. She says she abandoned
   the idea of having her own lab when she realized how long it was going
   to take to attain her goal. She was also swamped trying to keep up
   with course work. In class, she says, she would struggle to take notes
   while watching a sign-language interpreter, the professor, the
   blackboard, and maybe an overhead projector. "It is just too much
   input," Sadler says. She eventually switched to a Ph.D. program in
   education, where she is developing materials to educate the deaf
   community about AIDS as well as for teaching science to deaf people.

   People with disabilities have to know exactly what their needs and
   limitations are if they want the world to have confidence in their
   abilities, says Sheryl Burgstahler, who directs a 6-year-old program
   called DO-IT at the University of Washington, Seattle, which helps
   high school students with disabilities get into science. Dubnick, for
   example, says that although he had "excellent support" from his
   department, it was he who had to figure out how to fulfill his Ph.D.
   requirements--by obtaining a grant to hire an assistant to perform lab
   work. "You have to be extremely independent and extremely brass-ballsy
   to make it" he says.

   And you have to have faith. Even during the darkest times, says
   Hjelmeland, "I always thought things would be all right."

   Opening New Vistas for Blind Scientists

   Technology offers a wealth of opportunities for scientists with
   disabilities. Blind researchers, in particular, are benefiting from
   innovations and gadgetry. Here's a sampling of what's in the works:

   * Sightless math. Math is ordinarily represented in Braille by the
   Nemeth code, a variation on literary Braille that is tough to follow.
   So researchers are devising other ways to help blind people absorb
   mathematics. One project is the Audio System for Technical Readings
   developed by T. V. Raman, a blind computer scientist who works at
   Adobe in San Jose, California. Notation is converted to LATEX, a
   system that puts symbols in the order in which they are spoken. Then
   an Audio Formatting Language turns symbols into varied speech and
   non-speech sounds. Superscripts, for example, come across in a raised

   * Virtual reality by feel. Ken Barner of the University of Delaware in
   Newark is developing what he calls a sense-of-touch, or haptic,
   environment. He is refining a computer-controlled, thimblelike device
   that, as you move your finger, presses against your fingertip in
   patterns that convey Location on scientific plots or weather maps, for
   instance. A speech synthesizer supplies each data point.

   * Molecules in 3D. Blind chemist William Skawinski of the New Jersey
   Institute of Technology in Mount Laurel has devised a technique using
   Laser stereolithography for building three-dimensional (3D) replicas
   of molecules from computer graphics. A computer directs the
   construction of an enzyme model, for example, from photosensitive
   liquid resin that is modeled by an ultraviolet laser and cured in an
   ultraviolet oven. Scadden calls the feat "really incredible." Building
   on this work, Anshuman Razdan of Arizona State University in Tempe is
   creating a library of 3D models for teaching

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