Imke Durre, a physical scientist at the National Oceanic and Atmospheric Administration's National Climatic Data Center in Asheville, North Carolina, has been completely blind since about age 3. When she was in elementary school, her parents wanted her to attend a regular school near their home in Germany rather than a distant school for the blind. But the teachers in the public schools didn't read Braille, nor did the schools have Braille versions of textbooks and other classroom materials that Durre would need.
Durre's father was a computer scientist, and he figured it should be possible to pair a Braille device with a personal computer so that teachers could read and grade her work without having to know Braille, and so that she could read her assignments -- once they were transcribed to the computer -- in Braille. The problem was that no one had yet invented such a system -- but that didn't deter Durre's father, who decided to make it himself. He conscripted a student to write the necessary software, and by the time she was 10 Durre had the tools she needed to attend public school. Durre's mother typed her assignments and tests into the computer for 4 years, until the family moved to the United States and her school's vision-resource teacher was able to take over the job (which today would be accomplished with an optical scanner).
Durre credits her parents with instilling in her the belief that blindness need not limit her ambitions. "I never had any doubts because no one told me I should," she says. "My parents never projected any doubts, and in fact they probably steered me [toward science] by exposing me to it." Durre's mother sowed the idea of studying atmospheric science by reading her weather reports from the newspaper. Her interest in science persisted, leading her eventually to a Ph.D. in atmospheric science, in 2000, from the University of Washington, Seattle.
Assistive Technologies Enable Discovery
Like a biologist's microscope or a geographer's GPS, assistive technologies allow scientists to extend their capabilities. To learn more, read the companion article by Siri Carpenter.
The centerpiece of Durre's technological arsenal today, she says, is a combination Braille display and keyboard manufactured by the German company Handy Tech. For many years, Durre avoided using voice recognition and voice-output software because Braille was more efficient. But when she developed hand problems -- probably from using a poorly positioned Braille keyboard for 12 hours a day, she says -- she switched to the speech-recognition program Dragon NaturallySpeaking to compose e-mails and other documents, using the voice-output capability of a screen reader (Hal, made by U.K. company Dolphin Computer Access Ltd.) to check her work. She built a set of commands in the Dragon software to perform tasks such as navigating screen menus or shutting down her computer.
Though most of her technology is pretty high tech, she also relies on very low technology: Morse code, delivered through a device called a Darci USB, which saves wear and tear on her hands when she needs to work with, say, a list of files; the program jumps to the right file when Durre enters the first letter. Finally, she uses a Tiger tactile graphics printer to read simple graphs, and relies on written summaries, tabular output from her own calculations, or colleagues' descriptions of results to decipher more complex graphics.
The key to getting the work done, she says, is to consider the full range of technologies that exist rather than just purchasing a standard set of equipment. "The tasks we scientists need to accomplish often are unique and more complex than basic computer tasks, and so it might take creativity to choose the best combination of equipment and to figure out how to get the most out of that equipment."
Twelve years ago, when Marshall Begel was working on his master's degree at the University of Wisconsin, Madison, he fell through a hole in a floor while helping a friend build a house. He suffered a C5 spinal cord injury that left him unable to use his legs, hands, wrists, or triceps. "There's nothing good to say about it, except that on the positive side I only had one semester left, so it wasn't too tough to finish," says Begel, who now works as a general engineer at the USDA's Forest Products Laboratory in Madison.
Begel was fortunate that his field is one his disability allows him to pursue, he says. He has pulled together a raft of different technologies -- most of them computer-based -- that allow him to do his job. "There are a lot of things that come standard on computers that a lot of people know about but don't bother with, like keyboard shortcuts," he says. "I'm all about the keyboard shortcuts." To navigate his cursor, Begel maneuvers a trackball the size of a billiard ball with the back of his right hand. He clicks mouse buttons using a mouth-operated "sip and puff" device, designed by a co-worker, which activates a pressure-sensitive switch to left or right click. "It's good for keeping thin, too, because you can't snack," Begel says.
Some of Begel's other adaptations are decidedly low tech. He types with the eraser end of a pencil held in a splint on his hand, turning the pencil around with his teeth if he needs to write. The pencil has a soft lead so it takes less force. Begel keeps a rubber sleeve around his pencil; at first, he slipped it on so he wouldn't get paint chips on his teeth when he flipped the pencil, but he soon discovered that its gummy texture makes it useful for other purposes, like turning pages and manipulating CDs.
"Rehab therapists did their best to teach me ways to accomplish activities of daily living, but almost all of my methods come from the necessity of the moment," Begel says. "Whether it's using a table edge to pin open a stiff hardcover book, or using a long drinking straw to vacuum-draw an out-of-reach piece of paper, I never learn what I can do until I learn what I need to do."
A casual observer wouldn't guess that physicist Betsy Pugel of the National Aeronautics and Space Administration in Greenbelt, Maryland, is disabled. Her hearing and vision are normal and she's physically healthy and active. As is true for many who have disabilities that are non-apparent, the adaptations she uses to manage her attention deficit and hyperactivity disorder (ADHD) are as imperceptible as the disability itself. "Most people would not know that [a scientist with a non-apparent disability] is using an assistive technology, since it blends in so well to their environment," Pugel says.
Pugel believes ADHD is mostly an asset to her scientific work. As she observes, people with ADHD tend to have good strategic and long-term planning skills, to be visually oriented, and to seek out order and structure -- all advantageous for designing, analyzing, and interpreting research.
Still, ADHD makes it challenging to organize thoughts and work through problems. "I'd say that I have to work harder than most people to insure structure for myself," she says. Her success at work has depended on her realization that she needs to set aside sufficient time to organize, and on her ability to identify rituals and habits that reinforce organization. She relies heavily on "binning," strategically sorting data and other materials into rows and columns, a seeming maze of information that reflects how she thinks and allows her to put down work and pick it up later without forgetting where she left off. When she's analyzing particularly tough problems, Pugel says, she sometimes takes over the entire floor of a hotel room or conference room so she can move around stacks of data and notes.
Pugel says that different colors and textures evoke different feelings; she capitalizes on that quirk to store information. "I'm a very visual person, so being able to see how things are organized helps me keep it all together," she says. She sometimes uses printouts of paintings to remind her of particular ideas and keeps a ready supply of post-it notes in all colors, which she uses to categorize stacks of data and other materials. She buys folders in slick plastic, textured plastic, paper, cardstock, and leather because to her, each connotes a different feeling, and she can use that to organize her thinking. It's an idiosyncratic system that only she can make sense of.
Another key to keeping her mind organized, Pugel says, is writing things down. But that strategy only works in conjunction with binning; otherwise, she says, "I just have a pile of post-it notes that end up in the ether somewhere." It's partly for that reason that despite the many digital organizational tools available, Pugel is happier with low-tech solutions. "I've tried a Palm Pilot and my iPhone's organizer," she says. "They don't work for me, since the tactile and motion-driven part of me needs to have the process of writing and motion on a larger scale than screen-tapping or button-pressing can afford."
It was 1989, and physicist Ian Shipsey, then a 30-year-old postdoc at Syracuse University, had just been offered a tenure-track job at Purdue University in West Lafayette, Indiana. Then he was diagnosed with an aggressive form of cancer. Chemotherapy destroyed the cancer but severely compromised his immune system. He developed pneumonia so severe he fell into a coma. To save Shipsey's life, doctors administered an aggressive course of antibiotics. He recovered, but the treatment destroyed the hair cells in his cochlea, where sound vibrations are translated into neural impulses. Within about 2 months he was almost completely deaf.
Mindful that he was lucky to be alive, Shipsey took his new circumstances in stride. He learned to read lips and took up the job at Purdue. For a few years he was excused from teaching -- the assumption being, he says, that teaching requires communication, and communication requires hearing. Over the next few years his research flourished, he won some national research prizes, and his department eyed him for early promotion.
The hitch was that to be promoted he would need to gain classroom experience. So Shipsey's department assigned him to teach an intermediate astrophysics course for undergraduates. When class began, Shipsey explained to his students that because he was deaf, he'd like students to write down their questions. The strategy turned out to be an unqualified success -- so much so that he was presented the following year with a university-wide teaching award. "It proved that you can be deaf and teach," he says. "Because I could not hear, I would go to extraordinary lengths to make my explanations clear so that the questions wouldn't be trivial ones." He also thinks his deafness removed a barrier that normally separates students from their older, more knowledgeable professors. "By saying that I was deaf, that made me more human, more approachable."
In 2002, after 12 years of deafness and with some misgivings, Shipsey got a cochlear implant, a device that would bypass damaged tissue, transmitting sound signals directly to his auditory nerve. The implant restored his hearing almost completely.
The effect on Shipsey's work was immediate. Suddenly he could attend seminars and colloquia and actually hear what was being said. It became far easier for him to communicate with colleagues around the world by phone, Skype, or video conferencing. (Shipsey prefers Skype because the sound is better and because it's awkward to hold a phone against the implant's external speech processor.) For the first time, he began to serve on national scientific committees, where meetings are often conducted by phone. "While deaf, I was not included in these committees, although my peers were, because it was felt it would have been too difficult for me to follow the discussions and presentations," Shipsey says. The implant also made it possible for him to serve as co-coordinator of the LHC Physics Center at Fermi National Accelerator Laboratory, a post that requires talking with many dozens of people by phone every day, often in conference calls.
All the professional rewards Shipsey's cochlear implant has brought can hardly compare with the effect they've had in his personal life. The day the device was turned on, he heard his wife's voice for the first time in 12 years. He heard his 11-year-old daughter's voice for the first time ever. "That is the power of the cochlear implant," Shipsey says. "It restores your humanity. There are really no words in the English language to describe what it feels like."
Photo top: Daniel Lobo