Technology with the Human Touch
University of Kentucky senior Kevin Burberry (left) sits in a motorized wheelchair in front of a specialized keyboard and watches his words crawl across the computer screen. The words, for Kevin, don't come easily or quickly. Born with cerebral palsy, a condition evidenced by speech disturbances and a lack of physical coordination, Kevin is unable to speak or to type. But thanks to some hands-on support and innovative technology provided through UK's Interdisciplinary Human Development Institute (IHDI), Kevin can communicateand hold his own with anyone.
The technology that has enabled Kevin to unlock his voice is called, appropriately, the Liberator. "The Liberator has removed the barriers of communication and allowed me to be known to people," says Kevin, who has been attending UK for eight years. "When I received the Liberator, I started taking it to class. The result was incredible! As I began asking the questions on my own, instead of through an aide as before, the other students began to engage in open conversation with me. We even joked with each other."
His words not only appear on the screen; if Kevin wishes, he can activate a key that triggers a voice module, oddly reminiscent of the computer HAL in "2001: A Space Odyssey."
Because Kevin's head control is excellent, he operates the Liberator by use of a slender, pencil-shaped infrared light, which is attached to his glasses. The light is aligned with his line of sight. When Kevin trains the beam for a full second on one of the 10 dozen or so keys that blink brightly as a string of Christmas tree lights from the keyboard, letters, words or word clusters appear on the screen.
Clyde David and Susan Burberry, Kevin's parents, have been his "primary support system," Kevin says.
"I received my computer in the fall of 1993," Kevin says. "Before then, my aides had to serve as my interpreters and ask the professor questions for me. The other students knew that I had a mind, but because they did not know how to use the board to find out what I wanted to say, they were reluctant to communicate with me."
The Liberator was purchased for Kevin with the assistance of a project headed up by Barney Fleming at IHDI. Funding came from the Kentucky State Department of Vocational Rehabilitation. Fleming says that Kevin's Liberator costs around $9,000.
"This is what we call an 'augmentative communication device,'"says Fleming. "Its purpose is to provide expressive communication. There are a lot of people who are non-verbal or who have difficulty with speech to the degree that they need augmentative or alternative communication devices." He adds that this device can be used for more than communication. Kevin can also use it to access his computer and to control his environmentfor instance, he can use it to turn lights and appliances on and off.
After Fleming mounted the Liberator onto a wheelchair attachment for Kevin, his support role shifted, he says. "Kevin and I worked together configuring and customizing the system for his communication and other needs. This device is very complex and uses a fast and efficient icon-based language called MinSpeak."
"Assistive technology expert" is only one job description that could characterize what Fleming does at IHDI. He is currently heading up two projects that focus on providing rehabilitation technology services and training to people in Kentucky, and training for rehabilitation counselors and their clients. "Simply put," he says, "my focus is to help people do something they want to do, or do better, easier or safer. Sometimes technology is the solution, sometimes it's not. Our philosophy here is that you can do anything you want in your life; you may just have to do it a little differently. That's what assistive technology is all about."
Fleming came to UK in 1985 from Louisiana State University. He earned a Ph.D. in physiology and biophysics at the University of Iowa and did postdoctoral work at the Center for Bioengineering at the University of Washington. He admits, though, that he had several "shifts of interest" on the road to his doctoral work.
"I got an M.S. at Iowa in engineering and wanted to focus, initially, on engineering mechanics, but got sidetracked into biomechanics," says Fleming. "I was working there with a hand surgeon in orthopedic surgery, and not a day went by when we didn't see two or three people with significant agriculture-related hand injuries. So I learned a lot about prosthetics and biomechanicsthe quantitative study of body motions and the forces that produce those motions." Then after a brief time at the LSU medical center, doing research on microcirculation, Fleming joined the UK College of Medicine and was then hired as a rehabilitation engineer as part of a project in UK's Department of Special Education.
Shelley Lane, a junior at Dunbar High School in Lexington who has cerebral palsy, uses the Liberator, an intricate system of icons, to communicate with the world. Using an infrared light attached to her glasses, Shelley activates icons on the keyboard that make words and sentences. A speech synthesizer, one of the basic features of this technology, allows her to "speak." She is currently taking a class off-campus to improve her computer skills. Shelley's goal, after finishing high school, is to work in the computer field, perhaps as a Web page designer. IHDI's Barney Fleming provides knowledge and technical support to Dunbar staff who work with Shelley.
Rehabilitation engineering, he says, perhaps over-modestly, is mostly a lot of common sense. "There are a lot of things I can't do. I can't do anything about a person's physical or mental impairments, but I can try to modify the environment to minimize the effects of those impairments on the person's ability to function."
For most of us, he says, technology provides convenience, efficiency and safety. But for others, it is much more. "What distinguishes assistive technology from the technology we all use every day is that we could get along without the technology; Kevin cannot. For a lot of people the technology is not an option, it's a necessity."
When Kevin leaves the University of Kentucky this spring, he will be taking with him some good memories. "I have found the quality of education at UK to be very good. I have received an excellent learning experience at this institution," he says, adding that there have been two professors who have made his time here particularly memorable.
"The first course I took at UK was taught by Dr. Henry Schankula," Kevin says. "The course material covered the philosophy stemming from the Renaissance to the modern era. Henry accepted me as a student who wanted to learn, and he worked around my physical limitations. If I needed two weeks to type a 19-page examination, he gave it to me. I also really liked Professor Dallas High, who taught the Philosophy of Religion. He has a warm and gentle spirit, and he and I have become good friends and have remained that way." [High has retired from UK and is now living in Florida.]
Leaving UK is not the only major change soon to sweep through Kevin's life.
"I'm moving to Rhode Island and getting married this summer," Kevin says, obviously elated to pass along this news. "This was an internet romance, the result of a dating service for the disabled." Kevin's parents took him to Cape Cod to meet his e-mail soul-mate, Maureen, and her family, and will drive Kevin to Smithfield, Rhode Island, where they have purchased a house in consort with the parents of the bride-to-be. "Living with somebody else is going to be quite an adjustment," Kevin says. "However, it is an adjustment that I am more than willing to make. I'm sure I'll miss my immediate family the most when I move. I'm 32, and I have been separated from my family for only three days in my entire life," Kevin adds.
"Barney and his colleagues have been a crucial source of support for me. I can honestly say that I would not be where I am today if it were not for him," Kevin says. "Once he recognizes that a person with a disability has potential, Barney does everything that he can to bring that potential to the visible foreground."
Back on the Tractor
Fleming points out that as with all projects at IHDI, he doesn't work alone. "It is absolutely a group effort," he says. "Our director, Harold Kleinert, is involved of course in everything we do, and I'm in regular contact with rehab specialists from vocational rehabilitation, school counselors and training specialists, and UK colleagues from various departments across campus."
John Hancock (left) and Barney Fleming have done assessments together for years, traveling around Kentucky to bring assistive technology and other support to farmers with disabilities.
One of Fleming's regular partners is John Hancock, project director of AgrAbility in the College of Agriculture Cooperative Extension Service. "Barney and I have done assessments together for years," says Hancock from his office in Ag Science North. "I've known Barney as long as anyone I've known here. We troubleshoot together about once a month."
"Troubleshooting," for Hancock, means going to the aid of farmers in Kentucky who have disabilities, the goal being identical to Fleming'sto help farmers do what they want and need to do. And when Hancock shows up at a farm in Kentuckyhe travels statewide in his workhis clients, he says, "make an immediate identification."
"I was in a motorcycle wreck in '84 and was paralyzed," he explains. "So when I roll up to the door in my wheelchair, they know that whatever I have to say isn't just from textbooks or classroom lectures." Hancock was attracted to this job at UK after working with disabled farmers for two years in the late '80s at Purdue University. He's always been in his element in this work, he says, having grown up on a farm in Adair County, Kentucky, where his father had a farm equipment dealership.
Hancock's primary work can be summed up in the phrase "direct service to farmers," and in the past decade at UK he has helped hundreds of farmers and farm families. With funding from the College of Agriculture and the U.S. Department of Agriculture, the AgrAbility program helps locate resources for modifications to equipment when farmers can't afford it, and Hancock assists them when they need to modify the equipment to suit their needs.
"Most farmers I've worked with are pretty good welders, pretty inventive," Hancock says. "If you can help get them started, they can usually build something that'll serve their purpose. Farmers tend to be very resourceful. Sometimes you can't buy what you needyou have to make it. We try to put our best technology in place for their particular situation."
Hancock recently traveled to Garrard County after being contacted by the parents of a 14-year-old boy, Josh Land, who had been paralyzed in an automobile accident. John and Beverly Land had heard about Hancock through the staff at Cardinal Hill Rehabilitation Hospital during Josh's recuperation. Josh grew up with farming and, despite his disability, wanted to continue to help out on the family farm. Hancock's challenge: What could he do to help Josh use the tractor and operate it efficiently and safely?
"Josh had several things going for him," Hancock says. "He had a determination that he was going to do thisa feisty spirit. It also helped that his cousins had a machine shop." Hancock took the lift off one of his old tractors and gave it to Josh. Hancock, Josh and his cousins then took it into the shop and went to work on it.
"We rigged up a kind of swivel-sling-lift where Josh can sit and be lifted onto the seat of the tractor, and back down again," Hancock explains. "His cousin used a metal rod to connect the clutch and brakes to a hand lever, and since Josh still has full use of his arms, he can operate the tractor just fine."
"This works really well for me," says Josh from the Garrard County farm. "It's really easy to get in and out of."
Josh, now in Garrard County Middle School, plans to go to college after high-school graduation, then return to farming. "I just love it," he says. "For me, it's never been anything I think of as work. Whatever else I do in life, I want to farm at least part-time."
Hancock says that his biggest challenge isn't finding the right technology that can help a disabled farmer or even rigging up equipment to do the job. "The toughest thing is when you know you can't help somebody simply because the funding's not there. With the level of technology today, there aren't many things you can't do if you have the money to purchase what you need."
Founded in 1969, UK's Interdisciplinary Human Development Institute (IHDI) focuses its efforts on establishing environments that help people with disabilities, according to IHDI director Harold Kleinert. "By incorporating diverse activities such as research, interdisciplinary training, model program demonstration, advocacy and technical assistance, IHDI is working to promote independence, productivity and integration of persons with disabilities," Kleinert says.
Supported by nearly $5.5 million a year, IHDI currently houses over 30 projects, loosely grouped into categories that include early childhood, inclusive education, community living, and personnel training. "People with disabilities, their families, and agency personnel join IHDI staff members to form a close-knit network of individuals sharing a vision in which all Kentuckians, including Kentuckians with disabilities, participate fully in their communities," Kleinert says.
Several IHDI projects also have a national impact. For example, IHDI staff are currently providing assistance to approximately 20 states across the nation to help implement special education programs for children and young people with disabilities.