Assistive Technologies Enable Discovery

(A. Kotok)

Assistive technologies for scientists with disabilities are an extension of the technologies that assist all scientists, like a biologist's microscope or a geographer's global positioning system. "You can think of all technology as a toolbox," says Ted Conway, program officer for research to aid persons with disabilities at the National Science Foundation in Arlington, Virginia. "If you have the right tool, the job becomes easy. If you have the wrong tools, the job becomes more difficult and sometimes impossible."

(National Science Foundation)
Ted Conway

Some of the technologies that scientists with disabilities use are astonishingly sophisticated, such as the experimental brain-computer interface that University of Pennsylvania neuroscientist Scott Mackler uses. Mackler has the neurodegenerative disease amyotrophic lateral sclerosis (also known as Lou Gehrig's disease). He can't move, speak, or breathe without a respirator, but he can think just fine. The device uses brain signals generated in the motor cortex to control a computer mouse directly, allowing him to communicate. The technology, which is not widely available, has enabled him to remain professionally productive and engaged far beyond the point anyone would have expected him to. "It changed my life," Mackler told Science Careers in an e-mail, composed letter by letter using the interface.

The brain-computer interface Mackler uses anchors the advanced end of the assistive technology continuum. At the other end are adaptations so simple you can hardly call them "technologies," such as the pencil U.S. Department of Agriculture engineer Marshall Begel keeps tucked into a splint on his hand so he can type with it. Or the system of color-coded, multitextured folders that NASA physicist Betsy Pugel, who was long ago diagnosed with attention deficit hyperactivity disorder, uses to help order her thoughts.

(Rebecca Rivera)
Angela Foreman

Most assistive technologies -- from Braille displays to cochlear implants to power wheelchairs -- rest somewhere between these extremes of technological sophistication. For scientists who use assistive technologies, what matters is not how avant-garde their tools are but whether they help get the job done.

In recent years, the availability of assistive technologies has grown markedly, a development spurred in part by the Americans with Disabilities Act of 1990, which requires schools and employers to make reasonable accommodations for students, job applicants, and employees with disabilities. "There's really been an explosion of assistive technology that has changed young scientists' academic experiences and makes possible work experiences that might not have been possible 20 years ago," says Virginia Stern, director of AAAS's Project on Science, Technology and Disability in Washington, D.C. (AAAS is the parent organization of Science Careers.)

Angela Foreman, a bioengineer at the Rochester Institute of Technology's National Technical Institute for the Deaf in New York state, says in an interview that assistive technologies give her independence, allowing her to contribute to research that aims to further improve listening aids for the deaf.

In 2002, Foreman, who has been profoundly deaf almost since birth, got a cochlear implant in her right ear. "In the beginning, all of the sounds were bundled together, and it took my brain several weeks to start distinguishing the different clusters of frequencies," she says. Over time, she learned how to make more sense of sounds, but she still can't understand spoken language without visual cues. In addition to her cochlear implant, she wears a powerful hearing aid in her left ear and uses other technologies when she needs to communicate by phone. Most often, she uses an Internet-based phone-relay service to make and receive phone calls through an intermediary operator. She prefers a video phone because it enables face-to-face conversation. "With human voice, there are so many opportunities for connection. Being deaf or hard of hearing is a social disability because you're very isolated. The video phone puts me more at ease. Through the visual input, we are able to see how the other person is feeling."

Technology's limitations

Also this week in Science Careers

"Profiles in Technological Adaptation". With assists from technology, these scientists and engineers are getting their work done.

Like any technology, technologies designed as adaptations for people with disabilities have limitations. Imke Durre, a physical scientist at the National Oceanic and Atmospheric Administration who is blind, says that some Web sites and applications aren't fully accessible using assistive technology so her screen reader -- which translates written materials into Braille or voice output -- sometimes can't "see" clickable images, tables, or page headings. Durre also notes that voice-recognition software is slower and more prone to errors than typing on a keyboard; the software "isn't complete friends" with her screen-reader software, so she spends a lot of time getting everything to work together. "Then they upgrade something and I have to change everything around," she says, expressing an eternal frustration of computer users everywhere.

(Mike Koehle)
Nils Hakansson

"The catch phrase that you hear a lot is that disability is a 'thief of time,' " says Nils Hakansson, a bioengineering postdoc at the University of Delaware in Newark who has a form of muscular dystrophy that, for the past 10 years, has left him unable to walk. "It takes longer to do things, whether it's getting up from lying down or typing an e-mail. To some extent, if I put in a regular 8- to 10-hour workday, the time that I'm losing is my free time."

Occasionally, assistive technologies' very benefits can also present unexpected problems, says University of Delaware chemist Karl Booksh, who uses a power wheelchair and other technologies because of a spinal cord injury. When teaching, Booksh uses a tablet PC with a touch screen that enables him to present and make notes on PowerPoint slides. The tablet PC saves Booksh from having to go to a blackboard to teach -- and it saves the students some note taking, a feature you might think they'd relish. But many students actually complain more, Booksh has found, grousing that the slides aren't posted on the Web fast enough, that his handwriting isn't clear enough, or that they had to download software updates to read his Office 2007 files. "It's given students a whole other level of complaint, and if anything, it's hurt my teaching evaluations," Booksh says.

Skills that transfer

Many of the qualities needed to succeed in science -- resourcefulness, creativity, perseverance -- are the same ones needed to cope with disability. "Persons with disabilities don't have a choice: We have to be persevering and creative and good at solving problems," NSF's Conway says. "This is exactly the segment of society that we should be steering straight toward science and engineering."

Hakansson's experience bears out the idea. Because his disability began in childhood and is progressive, "There have always been things that I could do in the past I can no longer do," he says. "You constantly need to figure out a new way to get dressed, or to get from point A to point B, and so on. And then as things progress, you need to find a new way again." He has grown skilled at surveying his surroundings and putting things together in unorthodox ways. "If I find myself sitting on the ground, I figure there's got to be some way to use levers, or pile up books, or whatever, to get myself back into the wheelchair." That ability to jury-rig solutions and patiently start over when one solution no longer works suits him well to a career in engineering -- within which, as Hakansson says, the prevailing attitude is that "nothing is impossible. If we want to do something, even if it seems farfetched, we can find a way to do it."

(National Science Foundation)
Judith Summers-Gates

Making the most of assistive technologies often also demands technical savvy -- for example, the ability to tweak software parameters to make assistive devices work together, or to fix equipment when it breaks. "If you're out in the field or on the road, tech support may not be an option," says Judith Summers-Gates, assistant to the district director at the U.S. Food and Drug Administration's Philadelphia office. "If you can't pull a device apart and rewire it, you're going to be dead in the water."

Summers-Gates has had very low vision since birth and also has multiple sclerosis, repetitive stress injuries, and other medical problems. She has learned to combine many assistive technologies. For reading, she uses voice-recognition, voice-output, and screen-magnification software, as well as a closed-circuit TV (CCTV), which she can connect to a microscope for a larger display. In her chemistry laboratory she uses another, lightweight CCTV to examine, close up, reactions taking place under the hood. She uses a bioptic telescope (a miniature telescope mounted on the top of her eyeglasses), and carries an electronic magnifier to read items she can't take with her, such as signs on bulletin boards. In warm weather, when her MS symptoms are most pronounced, she often uses a power wheelchair or crutches. And because her voice becomes garbled during warm weather, she carries a portable keyboard with a speech-output device, similar to the device that physicist Stephen Hawking uses. "I have to tell people, 'If a robot calls, don't hang up -- it's not a sales call; it's me,' " she says.

In addition to honing the technical skills necessary for troubleshooting so many technologies, Summers-Gates has had to learn to be mentally flexible, focusing on the tasks she needs to accomplish. At bottom, she knows, a blind chemist does the same things any other chemist would do: gather and analyze data and look for trends. "People think that people with vision impairments can't get into chemistry," she says, but "that's because they can't envision how a person with low vision could do the job in another way."

Discussing technology needs

Knowing when to disclose to potential employers your disability and need for assistive technologies can be tricky. AAAS's Stern recommends that scientists on the job market present their technology needs early in the hiring process -- not in the initial application, perhaps, but before arriving for an interview. Describe your needs tactfully but matter-of-factly. "You wouldn't say, 'Would you get this software for me?' You would say, 'This is the software that I use, and this is why I use it.' "

Once a potential employer knows about your disability, be prepared to answer the question that prospective employers are likely wondering about, even if they know enough not to ask: How can you do this job?

Summers-Gates favors directness. "I've said, 'I bet you're wondering how I do the following [tasks],' " she says. "It brings the level of anxiety down in the room and opens the channels of communication. If you project confidence, you can allay whatever misgivings people are having." Her goal, she says, is to help others recognize that "everything they see on my resume has happened since I've been blind and since I've had my MS. This is not an exercise for me, this is daily life."

Hakansson agrees that it pays to be forthright. Although he doesn't advertise his disability, neither does he hide it. That's mostly a matter of practicality: The more time he spends pursuing work that is beyond his physical ability, the more of his own time he's wasting. After discussing one potential postdoc position with the sponsoring professor, Hakansson realized that, although the job involved computer modeling, which was his primary area of interest, it would also involve hands-on experimental work that would be too physically demanding. He and the sponsoring professor agreed that the position might not be a good fit. A few days later, she called again offering to seek supplemental funding through the National Institutes of Health's Research Supplements to Promote Diversity in Health-Related Research program. "I was very grateful," Hakansson says. "It was a wonderful offer." He ultimately selected a different postdoc, but the experience, he says, cemented his belief that it pays to be direct and open.

Booksh says his job-interview strategy has been to bring up only those accommodations that are necessary for the next step in the hiring process. When planning an interview trip, for example, he only needed the hotel to be wheelchair accessible; he didn't need the department's lab spaces to be accessible.

"I didn't want to distract them from the things that would make me look best in a hiring decision," Booksh says. "I wanted them to focus on what I could do for them, not what they could do for me."

Photo (top): An adaptive keyboard overlay for a Windows PC used by AAAS's Laureen Summers.

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