Kids and Keystrokes

By Lisa Bendall

Twenty years ago there was a little boy with cerebral palsy growing up in Ireland. His disability prevented him from using his arms and legs or speaking. He could communicate only with his mother, to a degree. She would look into his face and try to determine what he wanted. Twice, a psychologist had established his IQ at five years above average for his age, but there was absolutely no method for him to display his intelligence.

When this boy was 11 years old, he was given a new drug, Lioresal, which helped to relax the spasms in his muscles. Thanks to this scientific development, he gained some control over his head and neck, and suddenly found himself able to use a typewriter with a head stick. For the first time in his life he communicated in words. In his first-ever letter to his aunt and uncle, he said, "I bet you never thought you would be hearing from me! ...To think that I would be able to write to you was beyond my wildest dreams."

And it was not very long before Christy Nolan was churning out poems and stories considered brilliant, notwithstanding his young age. His ingenious use of words was compared to the works of Yeats and Joyce. In 1981 Christy published "Dam-Burst of Dreams," his first collection of writings. In 1987, his novel, "Under the Eye of the Clock," won the Whitbread Book of the Year Award in Britain.

Christy Nolan was a child prodigy. But without Lioresal, no one would have ever known. He would never have been able to express his thoughts, write his astute stories. Christy’s mother would have continued to care for his basic needs, trying to interpret the expression on his face.

Christy Nolan’s experience was a dramatic early example of the difference science could make in the lives of children with disabilities.

They may not all be child prodigies, but, like all children, they come equipped with curiosity, creativity, and their own talents and gifts to share with the world around them. Today, ever-swifter progress in technology is giving these children methods by which to explore their environment and show off the stuff they’re made of. Just as accommodations in the workplace create equal opportunity for employees with disabilities, technology can also level the playing field -- or the playground -- for children with disabilities. It can allow them to participate fully in school, in the community, and at home.

Jessica Javor of Mississauga, Ontario, is going on 11 years old. She’s about to enter grade six and when she’s not working on her homework, she writes stories, and likes to draw. When her father is out of town, she keeps in touch with him by fax, writing him notes to tell him she misses him. She deposits letters into her friends’ e-mailboxes. Her summer project -- before she goes away to camp -- is to get her own newspaper rolling, "The Red Balloon." She and her friends are designing it themselves and plan to sell subscriptions and advertising space. This summer Jessica is also volunteering at the library of the Erinoak rehabilitation facility in Mississauga, where she maintains three databases.

All of these activities are accomplished on her Macintosh computer. Jessica has cerebral palsy, which affects her mobility. It may be difficult for her to hold a pen, but using her special computer keyboard, she’s written a 2,800-word mystery story. ("I’m a real writer," she says.) It may be difficult for her to walk, but with her modem, she regularly surfs the Internet. Her computer allows her to access the world in a way that just didn’t exist a few decades ago.

Jessica had her first computer when she was three. She doesn’t remember any particular enthralment. "Since I needed it, it wasn’t like a toy," she says. "I didn’t feel the sense of, ’oh boy, look what Daddy got me!’" She simply took to it as though it were the most natural thing in the world. Now she complains about the sluggishness of her present computer (although the earlier one "was a snail compared to this one"), and she’s hungering for a much speedier Macintosh PowerPC.

The specialized design of Jessica’s expanded Unicorn keyboard compensates for her poor fine-motor skills, and it is programmable, so that she can type commonly used words (such as her name) with a touch of one key. Jessica is fully versed in many different software packages, and she can expertly skim through the icons on her screen to select just the right program for a task. Whether it’s checking her electronic mailbox for messages or searching through her CD-ROM encyclopedia for a topic, she moves in and out of the windows with the grace of a gymnast. (She often thanks her computer politely while it performs a function, but admits as an aside that "sometimes computers can be temperamental.")

Obviously, this technology fits right into Jessica’s education. Her computer, to her, is as a pencil case might be to most other students. Last year one of her class assignments was on leadership. Jessica chose to study Prime Minister Jean Chretien. After a good deal of electronic research and hard work, her finished project was an interactive report designed using Hypercard. It includes places where the reader can "click" to hear a sound bite of the national anthem or to find out more about a topic such as the referendum. Jessica can attach Hypercard Player to copies of the report, which allows any person to read it on their own Mac computer, without needing software to operate the interactive functions. When she had completed her assignment, Jessica brought it to school on disk.

The teacher asked for it to be handed in on paper.

Jessica refused, and a week later, the teacher finally approached her and asked to see the disk. But the teacher’s initial reaction was not unusual. The Javor family finds that many educators are having difficulty accepting the new technology into the classroom and appreciating its impact on the student. Especially the student with a disability.

"Other kids seem to go to school and learn," says Jessica’s mother, Pat Javor. "Unfortunately, Jessica goes to school and ends up teaching." She says that Jessica is constantly having to educate the staff at her schools about her disability, her needs, and the technology she uses. Recently it came up that because Jessica will be learning to write French, she will need a method for writing accents. The staff immediately assumed an assistant would scribe for her. It was Jessica who ventured that with a software-driven keyboard, she could write her own accents independently. Hence, perhaps, the irony when Jessica says that when she grows up, "I want to be a teacher, would you believe it?"

At one of her recent case conferences (where the professionals in the life of a child with a disability meet to discuss and plan decisions for her well-being), one teacher complained that the computer is too isolating. Jessica’s parents found this absurd. Walter Javor, Jessica’s father, points out that his daughter has access to much more of the world with her technology. She can communicate with people in all corners of the country. She can "be" in many more places than her disability might otherwise permit. "Is any of this stuff isolating?" says Walter. "It’s the opposite!"

Facilitating Jessica’s growing independence is a priority to her parents. This is evident in their home, which has an attractive level entrance with an automatic door, an elevator Jessica can operate herself, window blinds she can control electronically, and telephones she can reach and use. The Javors recognize that technology is the single most direct route to Jessica’s independence. They will do whatever it takes to facilitate it. They won’t even paint the room she computes in until she’s away at camp, because it would mean denying her access to her system for a few days. "It would be like taking all her toys and locking them up in a room," says Walter.

Walter works with Bell Canada as an Associate Director of Business Development, concentrating on education. Because Walter stays abreast of technological developments, he has been able to guide Jessica at the cutting edge.

Video conferencing is one development that has had amazing impact on the Javor family. Jessica has given talks on technology to audiences of anywhere from 60 high school students to 500 parents... without even being in the room. With video conferencing, she can deliver a presentation, interactively, on video to any location. Her first was a 30-minute talk to a class of educational assistants from Sheridan College who were attending a workshop on adaptive hardware and software at the Erinoak centre.

Jessica proved that video conferencing was a technology that could allow her to deliver her message with no loss of impact. "These students were absolutely amazed at how easily and independently she could do her homework, access bulletin boards and libraries, and use her CD-ROM," says Lorna Walker of Erinoak’s CommTech, who led the workshop.

They were further intrugued when when Jessica demonstrated her fax modem from home -- and the fax machine at Erinoak began to ring with her incoming message.

The real-time concept of video conferencing is so surprising that once, when Jessica was speaking to a room full of elementary students from her home, one of them asked Walter, "Is she really there?" So he asked his wife to go and get Blackie, the rabbit. When Pat left the camera and then returned to the screen holding their family pet, the child was convinced.

Video conferencing can bring Jessica to sites all over Canada, accessible or not, overcoming the obstacles of travel and accommodations. When Jessica was in Halifax, Nova Scotia, participating in Bell Canada’s Information Highway display, she demonstrated the technology of the future as she interacted with students in North Bay, Ontario. The children discovered they had stamp collecting as a common hobby, and began to compare their favourite stamps over the video link. When the North Bay school principal joined in to ask about the historical or political significance of certain stamps or designs, the conversation took an educational turn. No one noticed. It was too much fun.

As the technology for video conferencing is improved, and it becomes more commonplace, many students will be able to attend classes without even leaving their homes. With advances such as these and the developments being made at a rapid speed in the area of electronic information, the role of educators will certainly change. Walter foresees that the education of the future will no longer need to be time-dependent or space-dependent. It’s more self-directed, no longer requiring a "sage on the stage," as he says. The structure of the classroom, with teacher and pupil, hadn’t really changed since the times of Aristotle, he says, before now. And people will have to be willing to accept the change as part of the new reality.

In his presentations to audiences of educators, Walter talks about Jessica and what she can achieve -- not as a child with a disability, but as a student who uses technology to its fullest capability.

"There’s your client of the future," he tells them. "She represents a whole generation of kids coming through the system."

And Walter advises college and university personnel that they are going to have to be flexible and accommodating of the technology Jessica, and other students of the future, use in their education. "She’s going to expect it and demand it from you," he says.

(Lisa Bendall is an ABILITIES staff writer.)