Center's Computers and Volunteers Give a Voice to Disabled : Simi Valley: Severely handicapped people can tap out messages, do schoolwork and even write stories on high-tech machines.


She is only 9, but Kristen Johnson's passion is writing little stories about characters like the "upside-down fairy" or the rescue of her imaginary dog "for the 485th time."

Afflicted with cerebral palsy from birth, Kristen sits at a specially adapted computer and uses an unsteady index finger to slowly peck each letter on the keyboard.

It is creativity at an agonizing pace. But before the Thousand Oaks child learned to use a computer, she had no way to put her stories, thoughts and recollections on paper.

Kristen owes much of her progress to a group of tireless volunteers who run Special Awareness Computer Center in Simi Valley, which links handicapped adults and children with the latest adaptive technology.

The center opened in 1989, using office space donated by Simi Valley Hospital. In the small room packed with computers and other electronic gizmos, Suzanne Feit, the center's unpaid director, dispenses information to the handicapped and helps them try out equipment.

Special Awareness Computer Center is one of 45 such centers nationwide that make up the Alliance for Technology Access, a nonprofit organization founded in Berkeley in 1987 to provide handicapped people with adaptive devices for computers. The other closest centers are in Santa Monica and Anaheim.

Last year, the center's volunteer staff of six conducted 44 workshops and presentations and met individually with more than 400 handicapped people, their therapists, teachers and parents. They have assisted people from as far away as Morro Bay and Riverside.

It was Feit who helped Kristen's parents fit a plastic shield with holes over her keyboard to help her strike only one key at a time.

"Suzanne helped us in so many ways," said Frani Johnson, Kristen's mother. "There is a ton of software out there, and it is not cheap." They were able to try out programs at the center to decide which ones would help Kristen the most. Even so, her home computer system cost about $2,500.

Kristen uses a computer in her regular third-grade class at Westlake School. She has blossomed as a result, Johnson said.

"The computer has made her equal to the other children," she said. She does reports on the computer, using graphics capabilities to create accompanying pictures.

Feit has a master's degree in special education, but she had no computer training when the center opened three years ago. Now she talks comfortably about "bits" and "bytes" and "software packages."

Just the other day a paralyzed 52-year-old woman was brought to the center by her family. "She could only move two fingers, and she had been non-communicative for a year," Feit said. Her sole method of communication was to indicate "yes" with one finger and "no" with two.

By the time the woman left the center, she was able to electronically scan the alphabet and spell out words by pressing a green button.

"It's real exciting to give back the ability to communicate," Feit said.

If a disabled person can only move a finger, toe, head or eyebrows, there is a way to connect them to a computer using such devices as mouth sticks or pointers mounted on the head. One device fits like a retainer in the roof of the mouth and is operated by the tongue.

In recent years, computer companies, working with the disabled, have engineered many adaptations, said Jackie Brand, executive director of the alliance's Foundation for Technical Access in Albany, Calif. The 1990 passage of the Americans With Disabilities Act will continue to spur more, she added.

"Now we have legislation that mandates certain access for people with disabilities. These people want to go to work, but they lack the basic modification to do it," Brand said.

"Sometimes it's a $100 solution. The vast majority of the modifications are very inexpensive, maybe under $1,000." A computer can be fitted with a voice synthesizer for the blind for as little as $100, she said.

Sometimes it is as simple as "sticky keys," a keyboard adjustment that lets the one-finger operator press two keys at once to capitalize letters, issue commands to the computer and access other programs.

Feit doesn't always wait for technology. She offers classes in switch-making so that disabled people can easily turn on the radio, television, tape recorder or computer. A switch device costs $20.

"We had one woman who could only move a thumb," Feit said. She put together a thumb switch using about $2 worth of plumbing pipe.

"The stuff exists," she said. "It's a question of knowing where and how."

She speaks from experience. Five years ago, she was searching for computer equipment that would help her son, David, 14, who has Down's syndrome and attention-deficit disorder.

He had trouble writing legibly with a pencil because his motor coordination was inadequate. His words ran together and letters didn't stay on the line. Constant erasing put holes in his paper.

"It was frustrating for him," Feit said. "It was real hard for him to feel any success."

Now he types reports and does other homework on the computer. He can go back and make corrections and produce a clean printed copy, complete with graphics or illustrations.

"It's made a tremendous difference in his work and how he feels about himself," she said. David, a sociable kid who attends Sinaloa Junior High School in Simi Valley, recently ran for school vice president and lost by only 20 votes.

For others with more extensive limitations, Feit said, the computer has returned their dignity along with a measure of independence they didn't have before.

She likes to talk about Heather Hunt, a 9-year-old curly haired blonde who came to the center about a year ago. Afflicted with cerebral palsy, the Agoura girl couldn't speak and had little control over her body. A "yes" and "no" were pasted to the tray on her wheelchair and she would gesture to one or the other.

"For everything she wanted, you had to ask 20 to 40 questions," Feit said.

Now Heather plays computer games like Go Fish, using a board on her tray and a scanning device. On another board, she can scan the alphabet and spell words to communicate.

The boon has come by way of an electronic board with 32 squares indicating responses such as "hungry," "want to read," "need a hug" and even "That is so yucky" and "Bug off."

"I trained the family how to use the technology," Feit said. "And now they ask Heather how to use it. She's so quick."

Heather's computer equipment cost $7,000, a sum that a lot of families might not have. But, Feit said, some computer companies, such as IBM, offer 50% discounts to the disabled and their families.

The Simi Valley center doesn't sell equipment, and much of the paraphernalia it has for display and tryout has been donated by computer companies.

Feit works full-time at the center without pay. She is assisted by other volunteers, including Norma Foster, a former hospital nursing supervisor who suffered a stroke four years ago.

Foster came to the center two years ago to see if, by using computers, she said, she could "reopen passageways to information in my mind, the passageways that were damaged from the stroke."

To the observer, she shows no effects from the stroke that debilitated her except her slow, yet precise, speech. Now she works with other stroke patients who seek help from the center.

One woman who came to the center recently wrote a letter to her granddaughter using one of the new "talking" computers equipped with a voice synthesizer. "I love to see people gain things they thought they would never have again," Foster said.

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