Computers Give Handicapped New Freedom

Peter Mirche, editor of the Hot Digity Sig News, a newsletter on computer-related issues for the handicapped, recently bought a small, computer-like device named Butler-in-a-Box. He was delighted by how much “butlering” it could actually do for him.

“It operates 256 things around my house, 32 of them just by hearing the sound of my voice,” explained Mirche, 44, a quadriplegic since a car accident 20 years ago.

“It locks the doors. Or unlocks them. It dims the lights, and turns on the stereo. It’s very polite, too,” he said. “If I say, ‘Radio,’ it says, ‘Right away!’ ”

Milton Blackstone, founder of the San Diego Computer Society’s Disabled Interest Group (DIGSIG), said that computers and computer-related aids “offer more hope to the disabled than any other development in modern history.”

And it is only the beginning, Blackstone stressed.

Electronic Bulletin Board

On a recent sunny afternoon, Blackstone, a bearded, blue-eyed 63-year-old, was sitting in his office checking messages on his computerized bulletin board. An “open board,” it’s available 24 hours a day to anyone in the country who has a computer and a modem and is concerned, in any way, with the handicapped community.

As Blackstone’s fingers tapped on his keyboard, 72 messages rolled brightly across the screen.

“Here’s one from a young man in a wheelchair,” he said. “He’s 24. Sounds very bright. He’s planning a business of his own, dealing with financial management, and wants to hear from others running similar businesses from wheelchairs.”

When the computer group started its bulletin board in 1983, only two such boards existed in the country.

“And the other one, in Virginia, was primarily for the deaf,” Blackstone said. “But now there are at least 50. Anyone tapping in a message may get several replies. And they usually do.”

Many of the questions, on this particular afternoon, were from health professionals who work with the handicapped. Two were from attorneys. And some were about the nitty-gritty basics of everyday living.

“My father cannot use his fingers well enough to tie his shoes,” glowed on the screen in bright green letters. “Does anyone know where to find tennis shoes with Velcro fasteners?”

Outside Blackstone’s home-based office, beyond his wooden terrace, stretched a peaceful view of La Jolla rooftops and the ocean beyond.

Inside, things looked considerably more chaotic. Numerous shelves sagged with the weight of the latest reports on aids for the disabled. Eight computers--”Each one has different functions,” he explained--were tucked among towering stacks of paper work.

“A lot of people feel they can’t cope with a computer,” he said. “And this is particularly true of people with severe disabilities.” A glint came into his eyes as he added, “ These are the people I’m looking for.”

Up to the Challenge

The experiences of members of the computer group for the disabled have shown that even those with the most limited mobility can, and do, cope, he said.

“We have a young lady here in town who has ALS--Lou Gehrig’s disease. Her muscles have weakened to the point where she can only use her eyes and her mouth. But she’s writing a book using the ‘gaze switch,’ in which computer key selections are made through the movements of the eyes.”

The computer group members who are able to leave their homes meet monthly in North Park. (The Hot Digity Sig News, and the bulletin board, are particularly important, Blackstone said, to the ones who are bed-bound or without transportation.)

At meetings, members often test new computer-related products designed for the handicapped and make suggestions to the manufacturers. The results have been so gratifying that Blackstone has helped to set up similar computer groups in 10 other U.S. cities and in Canada.

How did he get into all this?

That’s easy for him to answer.

His son, Jamee, born 29 years ago, changed his life and, he stressed, gave it purpose.

In 1958, Blackstone was a television producer living on Long Island. He and his wife, Elvira, had a healthy 4-year-old daughter and they were looking forward to the birth of their second child. Elvira, however, had been exposed to rubella early in her pregnancy, when a neighbor’s visiting nephew caught German measles.

“But she just carried the virus without actually becoming ill,” Blackstone said. “So we were completely unaware that anything was wrong.”

Jamee arrived with multiple handicaps. He was blind and brain-damaged. He had a cleft palate and a cleft through his upper lip. (He had surgery 10 times before his first birthday.) He was also functionally deaf, although the Blackstones didn’t realize it while he was an infant.

They had a child, the doctors informed them, who would never talk, never walk, never be more than “a vegetable.”

“There are two kinds of parents of handicapped children,” Blackstone said. “Those who give up, and those who become assertive.”

The assertive ones, he added, usually become vocal advocates not only for their own child, but also for all types of disabilities.

No school would accept Jamee. “Schools for the retarded didn’t accept blind children, and those for the blind didn’t know what to do with the brain-damaged,” Blackstone said. So he rounded up six other parents of handicapped children, hired a teacher and several aides and started his own school.

It was at the school that Jamee began to “sign”--to communicate with his hands. At first all he could manage was the “R” sign for raisins.

“The teaching was based on operant conditioning, which uses rewards heavily,” Blackstone explained. “And Jamee has always loved raisins.”

As the months passed, he began to master more signs. Signs for drink, play, yes. For his parents, told to expect a vegetable, his progress was incredibly exciting.

“But we felt the New York winters were holding him back,” Blackstone recalled. “At 8 he weighed only 29 pounds. We had to bundle him up in so many clothes you could hardly see him.”

The family moved to La Jolla on St. Patrick’s Day, 1968. Blackstone, who had been a director of the Comedians Golf Classic in New York, combined free-lance writing with organizing golf tournaments, while he and Elvira continued their battle to find a good school for Jamee.

And it was a battle.

‘Outstanding Parent’

Earlier this year the State Council on Developmental Disabilities gave Blackstone its Outstanding Parent Award. (Or rather, the group tried to give it to him. At the ceremony he handed it to his wife because he believes she has done more to earn it.) A year after they moved to California, the Blackstones founded the Friends of Handicapped Children. The following year they founded the Multi-Handicapped Blind Foundation.

“Through necessity. Virtually every program Jamee was in we had to help to create,” Blackstone said. He clicked off his computer and strode up his office stairs to greet Jamee, who had just returned from his part-time job that he got through the Midway Adult Education Center, where he attends a class.

“Jamee was assigned to work for Pacific Theatres. He works at the one in La Jolla Village Square, wiping counters, folding seats, that kind of thing, three afternoons a week,” Blackstone explained.

Their son has come a long way from his days as a 5-year-old who could do nothing but lie on the floor to a time when 12 parents asked that Jamee be removed from a Sunday School class because he was “disturbing to the other children.”

Blackstone takes particular pleasure in the fact that, at the Midway Adult Education Center, Jamee has a good friend. “There’s one of his classmates, a girl, who has taken a liking to him. She comes over to visit him,” he said. “With a friend, with a paycheck, he’s a real person.”

Also Has a Computer

Because he lives in his parents’ house, Jamee also has a computer. His has special programs written by his sister, Jana, a special education teacher. (On a customized board Jana has attached small objects as signals to Jamee for the different buttons he needs to operate the computer’s voice synthesizer. One of the small objects is a box of raisins.)

“Eight years ago, when Jana married a computer engineer, I used to go to their house and not understand a thing they were saying,” Blackstone said. “I decided I’d better learn something about computers.”

Almost as soon as he began working on one he realized their incredible potential for helping the handicapped.

“I went to the San Diego Computer Society and said, ‘How about a special interest group for the disabled?’ They said, ‘If you can get 10 people to show up you’ve got a deal.’ ”

Thirty showed up at the first meeting in April, 1982. DIGSIG, the first of its kind in the nation, has been expanding steadily ever since.

“We have about 350 disabled members, but only about 40 to 60 can make it to the meetings,” explained Blackstone, who encourages able-bodied people to attend, too.

A popular game among DIGSIG members is Druthers. Members fantasize that for a single, glorious week, the best brains in the computer field are available to them, and an unlimited budget as well. What sort of devices would they choose?

“One of our earliest Druthers was a robotic arm, which could be attached to a motorized wheelchair and do everything from scooping up the newspaper to handing over a cup of tea,” Blackstone said. “We knew the technology already existed, but was a device like that available? Affordable?”

Two years ago, he took the “arm” request to Robert Murphy at San Diego State University’s mechanical engineering lab. Murphy already had a small articulated arm that the school had purchased for about $1,000.

Some of his students, while experimenting, succeeded in incorporating sensors in an Apple computer-driven system. Using this system, the arm could locate a small object, find its center of gravity, pick it up and deliver it to a selected location.

Affordable robotic arms still aren’t readily available, Blackstone said. “But it won’t be long before they are.”

According to Blackstone, the hottest area of development is in speech and voice recognition. At a recent convention in San Francisco, he watched, awed, as a woman who is blind and deaf demonstrated a “talking glove.”

“As she was finger-spelling, the glove sent signals through electrodes to a computer screen, where they were translated into words and characters,” he explained.

“These, in turn, sent signals to a voice synthesizer.”

The potential in such devices is incredible, he said.

Several years ago, when an Internal Revenue Service auditor informed him that he couldn’t claim his computer-related expenses as deductions because computers were not his profession, Blackstone founded a small, home-based business called Help-Tronics. Through it he customizes computer systems for people with special needs. He also uses it to draw donations of equipment for DIGSIG from computer manufacturers. His working days now usually run around 16 hours.

Peter Mirche, the computer group member who edits the newsletter, described computers as “the great equalizer for the disabled.”

“After my accident I couldn’t use my hands to write,” he said. “I could type about 10 words an hour, but they had so many mistakes in them I was too embarrassed to write any letters.”

Mirche didn’t, in fact, write letters for 15 years.

“But once I discovered how easily everything written on a computer could be corrected there’s been no stopping me,” he said. “I make my own Christmas cards now, using the print-shop program. Through the newsletter I correspond with people as far away as Korea. It’s very exciting.”