This is long, but interesting.
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From: Kelly Ford <kford@TELEPORT.COM>
To: EASI@MAELSTROM.STJOHNS.EDU
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.
Kelly
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
Science
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
computer.
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
disability.
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
voice.
* 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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