Assistive Technology Should Empower, Not "Help," Disabled People

by LauraHershey
LauraHershey@compuserve.com

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.