Hi All,

First of all, this is a great article -- it should be required reading for
all disability research grant reviewers!  Thanks to the author, Laura
Hershey,
for writing it, and to Kelly Pierce, for posting it so widely.

As a (relatively non-disabled) accessible technology developer and
researcher
for over 25 years, I recognize every point Ms. Hershey raises.  I have
lived and worked through all the "tech fads" of those years, and saw
millions
spent on rehab engineering in robotics, virtual reality, and even CB radio!
As an engineer, I cringe when I see my colleagues chasing after projects of
great technological excitement but little promise in terms of application
to the real needs of people with disabilities.  I understand the impulse
well,
and believe that each new technology offers both promise and jeopardy.  But
Ms. Hershey's inescapable points are that the measure of success should be
how
well the R&D can be turned into meaningful, effective, and affordable
products
and services, and that only people with disabilities have the expertise
needed
to identify the areas of real need.  All too often consumer participation is
too low on the list of project priorities, or missing completely.

Luckily, there are counter examples, and they are growing in scope and
impact.
All the major disability advocacy organizations now collect information from
their members about which products work and don't work, and communicate
those
findings directly to mainstream and assistive technology companies, who are
more
receptive now than ever, due in large part to government regulations.
Anyone
who wants to sell to the federal government, for instance, must comply with
Section 508's accessibility regulations.

The research agenda itself has improved as well.  The largest funder of
rehab
engineering programs, the National Institute on Disability and
Rehabilitation
Research (NIDRR), explicitly demands practicality from its network of
research
centers, the RERCs.  NIDRR recently funded two major projects on
rehabilitation
outcomes, which promise improvements in measuring the effectiveness of all
rehab activities, including technology.  Many of the RERCs do an excellent
job of involving people with disabilities.  For example, the Trace Center,
which has a number of disabled staffers, includes people with disabilities
as part of its training sessions for designers and engineers.  The RERC on
Telecom Access is partly operated by Gallaudet University, where deaf
researchers and consumers play a central role in directing its research.
The
new RERC on wireless technologies will invest a considerable portion of its
funding in involving consumers with disabilities in product testing.  In
fact
I think it's safe to say that the more "professional" a research program is,
the more likely it is to have strong and formal connections to the
disability
communities.  It's the wider technology world that is less aware of the
importance of consumer-driven research.  Impractical, technology-driven
accessibility prototypes come from mainstream technology sources, not the
rehab engineering programs.

The examples Ms. Hershey uses, the Intel and Siemens/Westinghouse award
programs,
could be improved by adding a "needs analysis" element. That is, every
candidate
prototype would have to be backed up by a demonstration not of technical
wizardry
but of some description of its potential benefit to users.  Won't it be a
great
day when a boring prototype that could serve millions beats out a sizzling
gadget with no potential users?

Why does technological sizzle win the contests and press coverage?  The
usual
explanations are accurate: we live in a flash-addicted culture, and one that
is
also technologically utopian.  I have a supplementary theory.  Over the past
30 years the world of engineering has lost out to the world of marketing.
The
products and services we buy are no longer the brain children of lab-coated
technocrats.  They are the result of extensive market research.  Marketers
now hand off a complete product specification to engineers, who are expected
to
implement those features that are on the list, and only those features.  (I
know of an instance in which a well-intentioned engineer added an
accessibility
feature to a product and lost his job.)  This leaves engineers without a
"sandbox" in which to exercise their pure craft.  So they have to seek out
arenas where marketing shows no interest.  Guess which market that is!

We can argue whether there is a realistic market of people with disabilities
some other day.  My point here is that much of the unrealistic rehab
engineering comes from engineers wanting to demonstrate, free from
marketing's
"corrupting" influence, the social value of their profession.  Only good
market research can re-direct technological resources towards true needs.
How
ironic it is that the promise of accessible technology may only be redeemed
by
the tools -- focus groups, consumer surveys, studies of market behavior --
of
a field that appears solidly committed to unconcern.  Without those tools,
applied as rigorously as possible, people with disabilities will continue to
be treated as ignorable consumers or as objects of pity, worthy only of
student
design projects.

Jim


Jim Tobias, President
Inclusive Technologies
[log in to unmask]
732.441.0831 v/tty
www.inclusive.com




> -----Original Message-----
> From: [log in to unmask]
> [mailto:[log in to unmask]]On Behalf Of Kelly Pierce
> Sent: Monday, January 14, 2002 8:57 PM
> To: [log in to unmask]; [log in to unmask];
> [log in to unmask]; [log in to unmask]
> Cc: [log in to unmask]
> Subject: Assistive Technology Should Empower, Not "Help," Disabled
> People
>
>
>
> Writer Laura Hershey comments on the so-called sign language glove and is
> highly critical of the peer review process that awarded the high school
> inventor $300,000 for this purported innovation.  She encourages federal
> rehabilitation research labs to involve people with disabilities in the
> development of assistive technology and raises the policy issue that
> federal funding of assistive technology research substantively involve
> people with disabilities at every point in the process to ensure
> meaningfulness and effectiveness.
>
> Kelly
>
>
> Assistive Technology Should Empower, Not "Help," Disabled People
>
> by LauraHershey
> [log in to unmask]
>
> Copyright 2002 by Laura Hershey
>
>
> Ryan Patterson, a high school student from Grand Junction, Colorado, has
> been getting a lot of attention over the past couple of months. This
> bright young inventor has won several big-money competitions -- such as
> the Intel International Science and Engineering Fair and the Siemen's
> Westinghouse Science and Technology competition -- for developing
> something he calls a "Sign Language Translator." It's a golf glove
> fitted with wires and a computer chip. Impressed reporters echo
> Patterson's enthusiastic claim that the device "translates sign language
> to printed text."
>
> But that isn't exactly true; the device's name is a misnomer. It doesn't
> translate American Sign Language, which is a fully-developed language
> complete with an enormous vocabulary, sophisticated syntax, and complex
> grammatical and stylistic conventions. Instead, it converts
> finger-spelling, the alphabet of 26 letters, into electronic text
> readout.
>
> In numerous media interviews, Patterson has stated that he initially got
> the idea for the device when he saw some deaf people in a Burger King,
> ordering food through a sign language interpreter. Here's how the Denver
> Post described the scene:
>
> "He watched as a teenage girl used sign language to tell an adult
> translator what she wanted to eat. The translator then had to order for
> her.
>
> "'How awful,' Patterson thought. As a teenager, he felt sorry for any
> teen who would always need an adult translator tagging along. And as a
> science whiz, he recognized there was wasted cost and effort in having a
> human translator. He knew there was an electronic solution."
>
> Pity, not necessity, was the mother of this invention. Never mind that
> both Patterson and the Post reporter got it all wrong: Interpreters
> don't "order for" -- or speak for -- deaf people. They simply facilitate
> communication by, yes, interpreting! Interpreters don't represent
> "wasted cost and effort" -- they provide access.
>
> The invention unquestionably represents an amazing technical
> achievement. From a scientific point of view, he no doubt deserves an
> "A." Culturally, however, the invention makes no sense. Sorry, Ryan.
>
> First of all, finger-spelling is not equivalent to American Sign
> Language. Deaf people whose first language is ASL will have to translate
> their own thoughts into English, and then spell out each word letter by
> letter -- a cumbersome way to communicate. Secondly, the glove can
> "translate" only one side of a conversation. A deaf person using the
> glove to ask a question could not expect an answer.
>
> The most effective, reliable, efficient way for deaf and hearing people
> to communicate with each other is through a skilled sign language
> interpreter. Of course, interpreters may not be immediately available.
> In some situations -- medical emergencies and criminal justice
> encounters, for example -- it's crucial that an interpreter be brought
> in as soon as possible. In more casual, simple interactions, like
> ordering a hamburger, deaf and hearing people can get their points
> across by writing notes -- a far better method than the unidirectional
> communication involved in the wrongly-named "Sign Language Translator."
>
> In an interview on Colorado Public Radio, Patterson said he realized, in
> that fast-food restaurant, that people who don't speak cannot be
> independent. Wrong. Independence comes from choice, control and
> responsibility, not from doing everything unassisted.
>
> During the same interview, Patterson said that he did not have any deaf
> friends or family members; nor had any deaf people tried using the
> device. He said he was planning eventually to test the device with some
> deaf people. I guess the product's usefulness -- or lack of same -- to
> the people it was designed for was not an important factor in the
> judges' evaluations. To date, Patterson has won over $300,000 in
> scholarship money, for a device which will benefit deaf people very
> little, if at all.
>
> That happens far too often in the "real" world of assistive technology
> research and development. Federal dollars pour into
> university-affiliated laboratories, supporting mostly nondisabled
> scientists in developing technology to "help the disabled." They pursue
> all kinds of ingenious ideas, but are not always guided by disabled
> people's stated needs, goals, or values.
>
> This young man's naivete would not bother me so much, except for two
> things. One, journalists exhibit even greater naivete, by accepting and
> amplifying Patterson's uninformed assumptions -- without even bothering
> to find so many career scientists exhibit the same tendency to develop
> technology "to help disabled people" without basing their research on
> any genuine understanding of the community they hope to assist.
>
> In September I attended a small conference in Canada, about technology
> design and disability. I saw several impressive presentations of
> exciting, innovative projects, which involved engineers and scientists
> working closely with disabled people to develop new tools. A good
> example: Researchers at the University of Washington were contacted by a
> man with Parkinson's. He explained that his neurological impairments
> prevented him from walking. He had discovered that markers placed on the
> floor, at regular intervals, provided him with the visual cues he needed
> to place one foot in front of the other. So, he reasoned, he perhaps a
> device could be developed that would simulate those floor markers. He
> approached the University researchers with this idea, and over the next
> several months, they worked closely together to design a pair of glasses
> which would project lines in the wearer's visual path. The project was
> initiated by a disabled person, and it ultimately benefited him by
> giving him more control over his environment. It has also yielded
> benefits for other people with similar conditions.
>
> At the other end of the usefulness spectrum, I saw several projects
> which seemed to have evolved in a complete vacuum. One involved
> life-sized puppets dancing on a stage, which could be controlled via
> computer by disabled people sitting at home. Why? Don't ask me! (I asked
> the designers whether any disabled people had been involved in
> conceiving, designing, or governing this project. No, they hadn't. But
> the developers assured me that they would be testing it with some actual
> disabled people real soon.)
>
> Disabled people know our own needs. We must be the ones to decide what
> technology can and should do for us. Researchers and inventors should
> collaborate with us to develop the technology that we can use, rather
> than forging ahead with a new product that we may not want or need, just
> because they're smart enough to do so.
>
> The Bush Administration has proposed a major increase in funding for
> assistive technology development. The president's "New Freedom
> Initiative" proposes $1.1 billion in funding to promote employment of
> people with disabilities, and much of this money focuses on assistive
> technology. For example, his budget requests $20 million in funding for
> Rehabilitative Engineering Research Centers to conduct research on
> specific technologies; $3 million for the Interagency Committee on
> Disabilities Research to coordinate government-sponsored assistive
> technology research and development; $5 million for the Assistive
> Technology Development Fund, to underwrite small businesses in doing
> technology demonstration, testing, and market research; $40 million for
> low-interest loans to assist disabled people in buying assistive
> technology; and so on.
>
> As disability programs go, assistive technology tends to be popular
> among conservatives and liberals alike. It seems almost magical in its
> flashy efficacy. Besides that, it's a comfortingly individual solution:
> Put the right gizmo in the hands of a person with any given disability,
> and Presto! Instant equality.
>
> I have to admit I'm a pretty big fan of assistive technology myself. I
> love the power my voice-activated computer and my sip-and-puff
> wheelchair give me. I want those researchers to keep developing more and
> better devices.
>
> But in inventing and refining those devices, researchers must consult
> with, and be accountable to people with disabilities. All those millions
> of dollars the Feds offer to universities and businesses should come
> with firm requirements for governance by disabled users of assistive
> technology.
>
> I hope young Ryan Patterson puts all that scholarship money to good use:
> I hope he goes to college and graduate school, and follows his career
> goals as far as everyone expects.
>
> And I hope the next time Ryan designs an invention for "helping people,"
> he'll first talk to the people he's trying to help.
>
>
>
>