Column from January 8, 2002
Assistive Technology Should Empower, Not "Help," Disabled People
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 foreign 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.