This is a long article so my apologies in advance. Nice to see this
subject getting such coverage. This article ran in Sunday's New York
Times.
Kelly Ford
kford@teleport.com
See my home page at http://www.teleport.com/~kford/index.html
September 14, 1997
Technologies That Enable the Disabled
By BRUCE FELTON
With meetings, paperwork, phone conferences and a travel schedule
that eats up three weeks a month, Urban Miyares doesn't get much
reading done during the workday. So Miyares, a San Diego
businessman who runs the Disabled Businesspersons Association,
rises at 6 most mornings and spends an hour or so catching up on
E-mail, reports and business magazines before leaving for the
office. In the evening, he picks up where he left off, typically
reading into the small hours.
Although Miyares is blind, Braille is of little use to him because
the diabetes that destroyed his vision also deadened the nerve
endings in his fingertips. Instead, he reads with a remarkable
device called a Kurzweil Reading Edge optical scanner, which takes
about five seconds to absorb a page of print and begin converting
it to spoken text.
Miyares exemplifies the degree to which so-called adaptive or
assistive devices have allowed people to sidestep their
disabilities and perform at peak levels. Some devices, like his
Kurzweil scanner, rely on highly sophisticated technologies; others
are as low-tech as amplified telephones and motorized wheelchairs.
"If I had been born 50 years earlier, I'd be sweeping floors
instead of running a business," said Christopher D. Sullivan, a
former Wall Street technical analyst who is deaf and heads Merrill
Lynch's Services for Deaf and Hard of Hearing Investors in
Plainsboro, N.J. "Technology is what makes the difference."
In recent years, an entire technology sub-sector has burgeoned with
the express purpose of capitalizing on the growing market for
assistive devices. A spokesman for Henter Joyce Inc., a company
based in St. Petersburg, Fla., that specializes in computer screen
reading devices for the blind, would not disclose earnings figures,
but said its work force had tripled to 24 in the last year. LC
Technologies, a small company in Fairfax, Va., that makes
eye-activated computers, said orders had increased sharply in the
last six months.
And, according to Voice Information Associates, a market research
firm in Lexington, Mass., the market for speech-to-text products,
projected at $410 million in 1997, should top $4.3 billion by 2001.
Top-tier technology companies like Xerox, which makes the Kurzweil
scanner, likewise joined the parade.
But this isn't to suggest that all mainstream technology companies
have kneed and elbowed one another in the race to make their
existing products accessible.
"It's only been two years since Microsoft finally agreed to make
its Windows software accessible to the disabled," said Lawrence
Scadden, who is blind and serves as a senior program officer for
the National Science Foundation in Washington. "I'm positive they
made the decision only when the states of Massachusetts and
Missouri and the Social Security Administration said they wouldn't
buy Windows because it wasn't usable by blind persons."
Luanne LaLonde, the accessibility product manager for Microsoft,
said, "It's no secret that these actions brought pressure on us to
place even greater emphasis on an effort that had already been in
place." She added that the company had made accessibility a
priority for six years and that Windows 98, the next version of its
signature operating system, "will be inherently even more usable by
vision-impaired users," with automatic adjustments of screen size
and contrast, among other features.
Not surprisingly, technology has made its greatest difference in
the seven years since the passage of the Americans With
Disabilities Act. Along with banning employment discrimination
against disabled persons, the act requires businesses with 15 or
more employees to provide "reasonable accommodation," a catch-all
phrase that ranges from gadgets that allow disabled workers to do
their jobs to ramps and widened doorways that let them get to their
jobs in the first place.
Large companies appear to have moved most quickly toward making
those accommodations. "The problem is that 80 percent of all jobs
are with smaller businesses, where there is more misinformation and
discrimination," said Doris Fleischer, co-author, with Frieda
Zames, of "From Charity to Confrontation: The Modern Disability
Rights Movement," soon to be published by Temple University Press.
"Big companies doing business with the federal government have been
required to provide accommodations since 1973. Smaller companies,
which typically don't depend on federal contracts, are still
struggling to accept the idea."
One common fear is that accommodating disabled workers is
expensive. "Building a one-step ramp to make a store
wheelchair-accessible costs less than $400," said Dr. Fleischer,
who teaches humanities at the New Jersey Institute of Technology.
"Mounting a table on blocks so that a mobility-impaired employee
can use it costs virtually nothing. These are minimal investments,
but they open a large and invaluable talent pool to employers."
Just how large is open to debate. The National Organization on
Disability, based in Washington, says 49 million Americans are
disabled, with 29 million of prime working age, from 21 to 64, of
whom half are employed. But some say those figures are low. "Start
counting people with dyslexia, diabetes and other hidden
disabilities, and you're over 100 million," Miyares said.
Whatever number is used, the disabled account for a sizable part of
the work force. As the general population ages, adaptive
technologies continue to evolve and employers become more
welcoming, that segment seems sure to grow. Some disabled workers
will rise to the top of their professions, others will coast and
the vast middle will perform adequately -- the same as their
able-bodied colleagues.
Then there will be those like Miyares, Sullivan and others who rely
on technology to help them push the limits of creativity and grit
and force a careful reconsideration of what it means to be
disabled. Some of their stories follow.
Endowed with large hands, dazzling virtuosity and a brilliant
future, musician-composer Jason Becker learned that he might be
suffering from amyotrophic lateral sclerosis a week after he was
hired as lead guitarist for David Lee Roth, the rock star. The year
was 1989 and Becker was 19.
Amyotrophic lateral sclerosis -- better known as Lou Gehrig's
disease after the New York Yankees superstar who died in 1941 -- is
a degenerative neuron impairment that gradually shuts down the
muscles, bringing atrophy and paralysis. It is incurable and often
fatal, but Becker's grim diagnosis "sort of went in one ear and out
the other," he wrote recently in A.L.S. Digest, a magazine
published on the World Wide Web. "All I knew was that I'd just
joined Dave's band and I was going to be the guitarist."
He performed with the band even as his symptoms advanced. When his
hands weakened, he switched to lighter-gauge strings and then a
guitar with an easier action. He started taking more than 100
vitamins a day and bought a $200 pair of Nike Air Jordans in an
effort to steady his shaky balance. Finally, he quit the band and,
after a brief stay in Los Angeles, moved back into his parents'
house in the San Francisco Bay area.
In 1991, unable to play the guitar without pain and shaking, Becker
began composing on a Macintosh Classic computer linked to an
electronic keyboard and a digital synthesizer. Later, as his
condition worsened, he tapped out musical lines on the keys of an
on-screen keyboard with a device held in his mouth.
He also wore a wireless "Head Mouse," which allowed him to control
a cursor and compose on screen solely by moving his head. A result
of those efforts is "Perspective," a haunting compact disk
recording of his music that departs radically from his hard-rock
roots. It was released this year by Apallon International.
"Not playing guitar has been the hardest thing about having
A.L.S.," Becker said in a recent E-mail message. "It has also made
composing more difficult. But the music from 'Perspective' just
flowed out of me, almost as if it came from somewhere else."
Since the release of "Perspective," Becker's muscle control has
continued to erode. At 27, he can no longer speak or walk, and has
limited movement in only three fingers.
He lives next door to his parents in Richmond, Calif.,
communicating with them and his fiancee, who take turns caring for
him, largely by means of an alphabet board designed by his father.
If he's in distress, or simply needs to have a fly brushed away
from his face, he rings an electric bell that sits in his lap.
In Becker's current condition, the devices he used even a few
months ago to compose music are largely useless to him.
"Jason is in a kind of artistic holding pattern, waiting for a
technology that will let him resume composing," said his friend and
computer guru, Mike Bemesderfer.
That may come in the form of the Eyegaze computer from LC
Technologies. At the heart of the $20,000 system is a retooled
casino surveillance camera that tracks the user's gaze with an
infrared beam. While looking at a grid of characters displayed on
the screen, the user is able to type by allowing his or her gaze to
settle on the desired key for a fraction of a second.
Becker took the system for a spin recently at his home. As he
shifted the gaze of his left pupil from key to key, letters, and
then words and sentences, appeared.
But Eyegaze does not lend itself to composing and orchestrating --
not at the moment, anyway. That is because it lacks an
eye-activated mouse, which Becker needs to operate his music
software. A spokeswoman for LC Technologies said that such a device
was under development and could be available next year.
The composer is eager to try it. "There's music that's been in my
head for years," he said. "I can't wait to make it a reality."
Deaf since infancy, Chris Sullivan attended a special school at
which pupils who used hand signals were smacked with a ruler. "The
idea was to read lips and to speak like hearing people," he said.
"Signing was considered a sign of weakness."
Sullivan learned his lesson well: as a successful Wall Street
investor and entrepreneur, he lived exclusively in the world of the
hearing, with no deaf friends, no interest in deaf organizations
and, almost as a matter of pride, no knowledge of American Sign
Language. Even his first wife had normal hearing.
All that is changed now. Sullivan, 50, is married to a deaf woman,
signs fluently and subscribes to Deaf Life and Silent News along
with Forbes and Institutional Investor. And at Merrill Lynch's
offices in Plainsboro, N.J., he runs a first-of-its-kind service
focused solely on the needs of deaf and hard-of-hearing investors.
The needs of such investors were not foremost on Sullivan's mind
when he joined Merrill as a technical analyst in October 1987. At
another firm, where he had tracked the commodities markets, he had
proved himself a canny reader of tea leaves. But he was caught off
guard, along with much of the rest of the world, when the stock
market cratered two weeks after he started at Merrill.
Over the next four months, he worked 90 to 100 hours a week feeding
market data and forecasts to jittery clients and helping Merrill
rebuild from the wreckage.
Around the same time, Sullivan's new wife, Vicki Joy, was doggedly
trying to raise his consciousness about being deaf. "She introduced
me to other deaf people, got on my case to learn signing, exposed
me to deaf culture," Sullivan said.
Notwithstanding his successes, he learned that deaf people often
found Wall Street distinctly user-unfriendly. "If you wanted
investment advice or a product brochure, you'd have to have a
hearing friend make the call for you," he said. "A lot of people
decided it wasn't worth the trouble."
In 1990, he gave up tracking the market to set up the unit serving
the deaf and hard of hearing. Technology has figured large in the
success of the unit, which began with $21 million in assets and
today has more than $628 million.
Sullivan recalled that a few years ago, a cadre of 85 financial
consultants served the unit's clientele. "It was easy to find new
business," he said, "because the market was totally untapped and
clients tended to be clustered in clubs and community groups, ripe
for the taking."
But the consultants quickly reached a point where they could not
handle more clients. Small wonder: "Even a simple phone
conversation with a deaf client using a TTY took way too long,"
Sullivan said. A TTY -- or telephone teletypewriter -- has a small
display screen and keyboard and attaches easily to virtually any
standard phone. The system, which is subsidized by small fees paid
each month by all phone users, allows users to converse by typing.
"With our sales force turning down leads for lack of time, I had
visions of the business imploding," Sullivan said. "I was very
nervous."
Deliverance came with the Americans With Disabilities Act. The law
laid the foundation for Relay, a telecommunications service, which
went into operation in 1993 and lets the deaf communicate easily
with those who hear.
A specially trained operator acts as go-between, conveying the
hearing person's spoken words to the deaf person on a TTY, and
reading aloud the TTY messages to the hearing person. The process
takes longer than a conventional phone call, but it is measurably
faster than TTY -- and frees the hearing person from having to
install special equipment.
"With Relay, we suddenly had all 13,000 Merrill financial
consultants in a position to take on as much new business as we
could give them," Sullivan said. "Business surged."
For entrepreneurs with disabilities, Urban Miyares likes to point
out, one of technology's most compelling benefits is the way it
screens them from their customers.
"Reading an E-mail I've sent, or talking to me on the phone,
there's no way you can tell what I look like," said Miyares, who
founded the Disabled Businesspersons Association in 1985, a year
after losing his sight. "Technology gives me the time to win your
trust and build my business -- without having to overcome your
reluctance to deal with a blind person."
The diabetes that eventually left Miyares blind had first surfaced
in 1968, when he was an infantry leader in Vietnam. Besides
deadening the nerve endings in his hands and feet, the disease
would leave him with wobbly balance; the impact of bomb explosions
and mortar fire also damaged his hearing.
Medically discharged from the Army, Miyares moved to New Jersey and
started a construction company -- the first of nearly a score of
enterprises he began over the next 15 years, including a hardware
store, a public relations firm and a German restaurant. He made
enough money to start the Disabled Businesspersons Association and
finance it out of his own pocket for the first 11 years. It is now
supported by private donations.
The association, which operates out of a one-room office at San
Diego State University, enlists volunteers to help people with
disabilities to get back to work.
"For many disabled people, self-employment is often the best road
back to the workplace, even if their ultimate goal is a salaried
job," Miyares said. "It's a way of rebuilding your confidence and
gaining work experience on your own terms."
Because so much of Miyares's work involves reading, the Kurzweil
scanner he uses, which costs about $5,000, has proven an essential
part of his success.
"The clarity is excellent, but it's always going to be slower than
normal sight-reading," he said. "You can save time and get more
reading in by turning up the speed." Miyares typically revs up the
device to two and a half to three times the speed of normal speech.
But it is important then to take one more step. Regularly switching
between male and female synthesized voices, Miyares said, breaks
the monotony and "keeps me from starting to talk like a robot,
too."
On a recent Tuesday morning, Brian Dickinson awoke with a mild
fever and a gnawing realization that he had picked a bad time to
get sick. Tuesdays are when the 59-year-old newspaperman normally
files the second of two weekly columns for The Providence
Journal-Bulletin in Rhode Island.
Another writer might have welcomed a guilt-free day in bed to surf
the channels and catch up on reading. But Dickinson, a fixture of
New England journalism since 1964, misses deadlines rarely -- and
never in good humor. Besides, enforced idleness isn't his idea of a
good time. Dickinson normally writes from eight to nine hours a
day, seven days a week.
Like Becker, the young musician, Dickinson has amyotrophic lateral
sclerosis, which has stripped him of the power to speak, swallow,
move his legs or arms, wiggle his fingers or turn his head. But
because he deals with words rather than musical notes, Dickinson is
producing some of the best work of his life, thanks to the Eyegaze
computer.
Seated in a wheelchair, his arms resting limply before him on a
pillow, Dickinson pumps out a steady stream of columns and book
reviews, composes letters and E-mail, and shoots the breeze with
his wife, Barbara, and their three grown sons.
In short bursts, he can hit 40 words a minute, but the going is
usually slower and bumpier. No problem there: by budgeting three
days to write each 800-word column, he builds in ample time for
"planning, reflection and reorganizing," he told a visitor,
conversing via the keyboard. "Having A.L.S. has freed me to take
risks with style -- plus I have an indulgent editor," he said.
"Over the years, I've learned the importance of turning in
letter-perfect copy, but it's especially important now, because
revising is so time-consuming."
Before his illness, Dickinson was best known as a political
commentator. He traveled often and widely, filtering his views of
world and national events through a liberal lens. These days, his
writing is more droll and contemplative, and less tied to breaking
news. "The Labor Day holiday always seems to lack a clear
identity," he wrote recently. "If the purpose is to recognize us
all for toiling all summer, the term 'Labor Day' is a howler. No
one works any harder in summer than he absolutely must."
Dickinson discusses his illness in print a few times a year;
otherwise, his prose doesn't yield a whisker of evidence that there
is anything wrong with his body. His first symptom -- a tingling in
his right leg -- appeared in 1992. When he grew too weak to type,
he composed his columns orally with a Dragon Dictate
voice-recognition device, which converts speech into type.
Eventually, he recalled, his speech failed, "so that the machine
couldn't understand me."
Later, he pecked out his columns on a specially configured computer
with the one finger he could still move. Ultimately, that ability
vanished as well. He began using the Eyegaze system in 1995.
For all its world-of-tomorrow remarkableness, the Eyegaze system
isn't without its nits. "It can be hard on the eyes, and after a
few hours of gazing, I take a break for eyedrops," he said. Also, a
cough or a random glint of light from Dickinson's eyeglasses can
send the cursor skittering out of view, stopping him in his tracks
while he takes the time to recalibrate the camera beam.
Occasionally, that requires help. "There are times he's sat there
stuck for 45 minutes before someone has walked into the room and
fixed the problem," his wife said.
In all fairness, sometimes the villain isn't a computer glitch, but
old-fashioned creative block. "If I get stuck, or need a break, I
flip to a game screen and play solitaire," Dickinson said. "It's no
different from when I worked in a newspaper office. If I hit a
wall, I'd go out for coffee or schmooze with my colleagues about
the Red Sox."
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