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“However far modern science and techniques
have fallen short of their inherent possibilities, they have taught
mankind at least one lesson: Nothing is impossible.”
— Lewis Mumford,
American writer and historian of technology
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Thirty years ago, with computers on the rise, and a
fictional bionic man and woman entertaining us on television, electronic
technology presented a world full of endless possibilities.
In the 21st century, only a few people are using bionic
limbs, but the world for people with disabilities has changed dramatically
in every aspect of daily living.
Vast technological advances, particularly in communication
and mobility, have enabled people with disabilities to be active almost
everywhere, maintain relationships, and contribute to the workplace
and the community. In addition, said Elizabeth Waerzeggers, a physical
therapist at the MDA clinic at St. Vincent’s Hospital in Green
Bay, Wis., “Technology has helped increased life expectancy [see “Vital Functions”], and quality of
life is so much better than it was 50 years ago. You’re seeing
people with disabilities doing much more and doing it longer.” |
| Communication |
Computers, e-mail, the Internet, augmentative alternative
communication (AAC) devices and other electronic wonders have opened
new doors to the worlds of communication and social interaction.
Tom Bush of Tucson, Ariz., who retired as MDA’s
director of Online Services in 2004, said, “It’s [computer
technology] allowed people who would be isolated otherwise and couldn’t
conduct reasonable communication with others to communicate with everybody.
They can maintain effective relationships through e-mail and the Internet,
and remain active for as long as possible.”
Bush, 63, who has spinal muscular atrophy (SMA), noted
that the information superhighway has enabled people with disabilities
to maintain social relationships across all distances.
Christamae Zimpel, 20, of Ceres, Calif., has congenital
muscular dystrophy and, like many people with neuromuscular diseases,
she relies on e-mail and the Internet to communicate with friends and
loved ones.
“Communication is critical to my quality of life,”
she said. “I would feel much more isolated and have less of a
social life without e-mail. The Internet gives me a portal to another
world.”
With severe weakness in her hands and arms, Zimpel for
a time had trouble using a keyboard to send e-mails, write in her journal,
write essays for her A.P. English class, or surf the Internet. After
months of frustration, she now uses an on-screen keyboard, a software
program that displays a virtual keyboard on the computer screen. Specially
designed keyboards, mice and other input devices also give people with
muscle limitations computer access.
Augmentative alternative communication (AAC) devices
— high-tech machines that generate speech — have changed
the face of communication for people with disabilities even more.
Karen Collins, a registered speech-language pathologist
at the MDA clinic at the University of Connecticut Health Center in
Farmington, pointed out that the original AAC devices were similar to
typewriters. Users would type on a keyboard, and the message would appear
in a small window strip.
“Today, they have touchscreens, switch capabilities
and telephone capabilities,” she said. “Our technology has
grown in that respect, and it’s more accessible. Once patients
lose that ability to type, they need to be able to do something else
to preserve communication.”
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Augmentative
alternative communication (AAC) devices,
especially those that generate speech,
have transformed the face of modern communication
and increased opportunities for greater
social interaction.
|
Both adults and children with disabilities benefit from
AAC devices.
Students “can use AAC devices to answer questions
or take tests. That is allowing them to stay in the classroom, and be
independent of needing an aide,” Waerzeggers said.
Some people use integrated AAC devices for computer
access to e-mail, the Internet and word processing, in addition to speaking.
Depending on the symptoms and progression of a neuromuscular
disease, a user can stay in the game by using AAC technology’s
speech-recognition software; head-tracking and eye-tracking input; portable,
hand-held devices; or voice banking (recording phrases for playback
later). |
| Thinking, Learning and Working |
Besides keeping the communication channels open, computer
advances help people with disabilities continue thinking, learning and
working. One way is by reading books, newspapers and magazines online.
Zimpel subscribes to an online collection of digital
books.
“I wouldn’t have been able to read Harry
Potter or any of the other hundred books I’ve downloaded thus
far [without this service],” she explained. “Reading allows
me to escape to a different world and become someone else.”
In addition to virtual libraries, people can learn about
current events by reading online newspapers, magazines, encyclopedias,
journals and hundreds of online news sources; browsing through art collections
at the Metropolitan Museum of Art in New York City or the Louvre in
Paris; or virtually going anywhere in the world on the World Wide Web.
Additionally, a vast variety of software has been a
godsend for writers, artists, musicians, graphic designers, engineers,
architects and other artists and professionals who can use these tools
more easily than hand-held ones.
As technology has advanced, the workplace has evolved,
creating more jobs that aren’t physically demanding. This puts
people with and without disabilities on a more equal plane in the job
market. It’s also made telecommuting and self-employment realistic
options.
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Seated
in his power wheelchair, sports reporter
Matt Schuman uses his laptop computer
to cover the Denver Broncos for the Greeley
(Colo.) Tribune.
|
Matt Schuman, 42, says he wouldn’t be working
if it weren’t for computer technology. Schuman, who received a
diagnosis of SMA as an infant, has worked at the Greeley (Colo.) Tribune
for 19 years, where he reports on local sports and the Denver Broncos.
“One of the greatest technological advances that
has really helped me are laptop computers,” he said. “I
can still type, but because of my limited strength and mobility in my
arms, I don’t type very fast. So, I need something with keys that
are easy to push.”
Schuman, a member of MDA’s National Task Force
on Public Aware-ness, also credits software programs for allowing him
to telecommute. After writing a story, he simply dials the newspaper
using a modem and e-mails his stories to his editor from home or a game.
“I can send a story so much quicker now. I’m
a little slower now, so it is nice to have a little extra time to write
close to deadline,” Schuman explained.
Schuman estimates that he works at home 80 percent to
90 percent of the time. While he still covers games, he also writes
feature stories and conducts interviews via telephone.
Working from home would have been almost impossible
when he started at the Tribune in 1986 because electronic communication
was rudimentary then, he said.
“Instead of me sitting at home and drawing a Social
Security check and using more government funds, I’m working and
paying taxes,” Schuman explained. “Technology helps everybody
because the more independent someone is, the more he is helping out
all of society.”
Schuman believes that speech-activated software will
allow him to keep working once he can no longer type. |
| Vital Functions |
Breathing is the basis for human life, and respiratory
problems and ventilators often are realities for people with neuromuscular
diseases.
Since the days of “iron lungs” several decades
ago, improvements have made respiratory devices smaller, portable and
more sensitive. Technology allows many choices in both invasive and
noninvasive ventilation, including positive pressure devices, volume
ventilators and BiPAPs to be used part-time. Some ventilators are as
small as a laptop computer. And, unlike old-style vents, having a tracheostomy
no longer means loss of speaking ability.
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Former
MDA national Board member Tedde Scharf
uses a method of noninvasive ventilation
called the pneumobelt, which pushes the
diaphragm up for exhalation and lets it
descend for inhalation.
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Tedde Scharf of Tempe, Ariz., who has a form of limb-girdle
muscular dystrophy, has almost no voluntary muscle movement and relies
on 24-hour assisted ventilation.
The retired assistant dean of student life at Arizona
State University had a tracheostomy in 1988, and in 1995 after seven
years of invasive ventilation, she successfully switched to a method
of noninvasive ventilation.
“I now use a pulmonetic ventilator, which only
weighs 12 pounds,” says Scharf, 63. She uses an unusual type of
noninvasive ventilation — the pneumobelt. The device pushes her
diaphragm up for exhalation and lets it descend for inhalation.
Furthermore, people with neuromuscular diseases have
found technological ways to manage heart problems, including electronic
cardiac pacemakers and implantable defibrillators.
|
| Daily Environment |
Environmental control units (ECUs), also referred to
as electronic aids to daily living (EADLs), afford users the
opportunity to manage their environment independently.
 |
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Activated
by voice or a switch, environmental control
units, or electronic aids to daily living
(EADLs), enable people with disabilities
to exert control over their daily environment.
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“There are major advances in the control of homes
— what they call smart homes. Everything can be centralized.
To hit a button and have a door open, that’s a big deal,”
said Nicholas Johnson, 42, of Waltham, Mass., a member of MDA’s
National Task Force on Public Awareness. Johnson, a mechanical engineer,
has Friedreich’s ataxia.
Three decades ago, the first control units were a box
and a switch for each light or appliance. Now, one small device, activated
by voice or a switch, lets users control everything from the telephone,
doors, security systems and lighting to televisions, VCRs, DVD players
and radios.
Zimpel uses an ECU as her universal remote, controlling
her CD player, DVD player, the television and a fan in her room. She
used to rely on others to adjust the volume or change the TV channel,
or had to leave her fan on all day because she couldn’t turn it
off.
“It’s a simpler model but just fine for
my needs,” Zimpel said. “This simple box has given me remarkable
independence.”
Zimpel operates the unit with a switch that she pushes
when the scanning light gets to her target.
“When you lose so many abilities such as dressing,
going to the bathroom, walking, etc., every iota of independence is
very precious,” she emphasized.
Some people also use AAC devices as environmental control
systems. The communication devices have an infrared sensor built in
so users can purchase a universal unit that will pick up the signal
for each item to be controlled. Michelle Lange, an occupational therapist for Assistive
Technology Partners at the University of Colorado Health Sciences Center
in Denver, explained that powerful ECUs “can make the difference
in someone staying at home in an independent living situation versus
going to live in a group home.” She’s a board member of
RESNA (the Rehabilitation Engineering and Assistive Technology Society
of North America). |
| Mobility |
Even for those who aren’t computer literate, technology
has made a tremendous difference by keeping people with disabilities
mobile.
Today you can find power wheelchairs that can be driven
on almost any terrain. Many are powered by the flip of a switch, and
some can stand or even climb stairs.
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Introduced
in 2003, the iBOT Mobility System from
Independence Technology has helped revolutionize
the world of power wheelchairs, as it
enables users to climb stairs, raise themselves
up to eye level and move through various
types of terrain.
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Tom Bush recalls that electric wheelchairs 30 years
ago didn’t have a lot of power, and they tended to be “clumsy.”
The newer power chairs are faster, the batteries last longer, they’re
more maneuverable, and they’re stronger.
Tiffany Paavola, an occupational therapist at the Marquette
General Hospital’s Rehab Department in Michigan, said, “With
a power wheelchair, they can get out into the community and be more
integrated in everyday activities. And, with mobility comes more independence.”
While the computer is his lifeblood, Matt Schuman remains
adamant that he wouldn’t be working today if it hadn’t been
for the electric wheelchair.
“[Technology] has saved my job because I used
to drive my wheelchair up and back to work all the time in the cold
weather,” Schuman said.
When he started working at the Greeley Tribune in 1986,
he depended on his chair to get him to and from work — rain, sleet
or snow — every day.
“I don’t think I would have gotten a job
at all had I not had a power wheelchair,” he explained. “I
had to have some way to get back and forth to work and some way to get
around at work.”
Christamae Zimpel, who has used a power wheelchair for
11 years, has a specialized chair with tilt and recline.
“Without my power wheelchair, I would be stuck
in bed with no freedom,” Zimpel added.
Tedde Scharf, who has used a power wheelchair for 35
years, said that people had to sit upright in one position all the time
in the old chairs. Now, Scharf appreciates that she can recline the
back and raise her chair, for example, to reach the telephone.
The power wheelchair has helped to bolster the independence
of children with disabilities, especially at school.
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Advances
in both computer and wheelchair technology
have opened new doors to the world of
communication and mobility, presenting
users with several alternatives.
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“For example, children with SMA often get tired,
so the power wheelchair can help them make it through a whole school
day, and it also decreases the amount of caregiver assistance,”
explained Jessica Rascoll, a physical therapist at the MDA clinic at
Columbia University Medical Center in New York.
Besides highly sensitive joysticks, electronics provide
other wheelchair control options, including head, chin, foot, toe, knee,
trunk or shoulder movements that send signals to the control box. Switches
can be attached to any part of the chair, and sensors can be mounted
on eyeglasses, earpieces or special headbands, allowing people to drive
the chair simply by tilting their head.
A recent development is a mini-proportional joystick,
which is highly sensitive and only requires small, low-force movements
to control the chair.
Occupational therapist Michelle Lange also discussed
another recent development — mid-wheel drive. It has two main
advantages over traditional front- or rear-wheel drive: It’s easier
to drive in tight spaces and holds its course better.
The technology has advanced so much that “you
can have an adult-size chair that turns completely on its center that
only takes 22 inches to complete a turn,” Lange said.
Transportation is another important aspect of mobility.
For example, Tom Bush has an adapted van with special driving controls.
The van cost $27,000, and the adaptive equipment, including the ramp
and driving controls cost $36,000.
Bush operates the brake, gas and zero-effort steering
with electronic hand controls. He presses buttons for the windows, turn
signals, lights, etc., and his wheelchair locks in place while driving.
“All of that has only been available since the
late 1980s, and it’s improved tremendously,” Bush explained. |
| Looking Toward the Future |
Without a doubt, electronic technology has helped to
boost self-esteem, independence and convenience for people with disabilities
in every aspect of daily living.
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|
Users
no longer have to rely on the traditional
joystick to operate a power wheelchair.
Various control options, including mini-joysticks
and switches, as well as head, chin, foot,
toe, knee or shoulder movements that send
signals to the control box, can keep you
on the move.
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Yet, other issues can’t be solved with a simple
flick of the switch, and they keep many people from benefiting from
technological solutions.
These include bureaucratic red tape; inconsistencies
among the federal government, states and insurance companies over funding
for assistive technology; basic biological needs; and — most significantly
— the cost of these electronic wonders.
“There’s great state-of-the-art technology
that has little ability to get to a lot of the people who could probably
use it. The people who need it the most simply can’t afford it,”
Bush said.
Inconsistency among the states and the federal government
on support for people with disabilities is the underlying problem, he
said.
“Some states have a more enlightened view,”
he said. “They supply a significant amount of assistive technology
for adapted vehicles and other devices to keep you employed.
“They look at it as a win-win situation. If you’re
employed, you’re earning a salary, and you pay taxes. So, you
are contributing value to society.”
Bush said that employers and the states must look at
“what is really important for people with disabilities who want
to hold a job.”
It’s vital to evaluate a person’s need for
assistive technology from the time he or she wakes in the morning until
the time he or she goes to bed at night. For example, specialized software
at work isn’t helpful if someone doesn’t have transportation
to the job.
Paavola agrees that, while smart technology has given
people with disabilities a great deal of control and independence in
their own homes, “insurances look at what’s medically necessary,
and ECUs don’t fall into that category.”
In 2006, there are still challenges for people with
disabilities that have yet to be solved by machines, electronics and
computers.
Computers haven’t provided a solution for independent
self-care, especially in personal areas such as bathing, toileting and
dressing. Although lifts in the home have become more specialized, a
person still requires assistance when getting in and out of the lift.
But, we’re getting closer to making bionics a
reality for people with disabilities.
Here’s Christamae Zimpel’s vision:
“When my sister and I used to play with our wheelchair
Barbies, we used to imagine that robotic arms came out of the sides
of their wheelchairs.
“The arms were folded in the wheelchair under
a panel, and then by toggle or voice command, they would become the
person’s arms with hands controlled by the user.
“It sounds pretty far-fetched, but one hundred
years ago, no one would’ve believed in technology
like the Internet and e-mail.”
In another 30 years ... who knows? |
"Technology helps
everybody because
the more independent
someone is,
the more he is helping
out all of society"
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Technology Resources
For details on MDA’s assistance with purchase
and repair of wheelchairs and communication devices, see “Your
MDA Journey.” And read how Space Age technology has
triggered one man’s imagination in “From
Where I Sit: Exploring Inner Space.”
Quest Articles
“Access Unlimited: High-Tech
Ways to Get Going... Talking... Working... Creating,” May-June
2004
“As the Wheel Turns,” a regular Quest column with up-to-the-minute information on wheelchair
technology
“Determined to Drive,”
March-April 2004
“EADLs — Control
at Your Fingertips,” September-October 2005
“The Great Mouse Hunt,”
May-June 2004
“The Great Trach Escape,”
September-October 2003
“Mind Muscle,” May-June
2004
“Mind Your Own Business
– Work at Home,” November-December 2003
“Talk to Type: Speech Recognition
Software,” May-June 2004
“Talking With Technology,”
March-April 2003
“When Your Plan Is a Van,”
March-April 2004
Technology Support Information
AbilityHub
www.abilityhub.com
(802) 775-1993
ABLEDATA
www.abledata.com
(800) 227-0216
Alliance for Technology Access
www.ataccess.org
(707) 778-3011
Assistive Technology Industry
Association (ATIA)
www.atia.org
(877) 687-2842
AT Network
www.atnet.org
(916) 325-1690
Closing the Gap
www.closingthegap.com
(507) 248-3294
Computer Resources
for People
with Disabilities, by the Alliance for
Technology Access, with foreword by
Stephen Hawking, 2004.
Hunter House, (800) 266-5592
www.hunterhouse.com
Job Accommodation Network
(800) 526-7234
www.jan.wvu.edu
RESNA Technical Assistance Project
www.resna.org/taproject
RESNA Alternative Financing Technical Assistance Project
www.resna.org/AFTAP/state
(703) 524-6686
Trace Research and Development
Center
trace.wisc.edu
(608) 262-6966
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