September, 1990
Reader’s Digest
The Legacy of Neil Squire
On a routine tackle in a 1971 college football game in Lennoxville, Que., Butch Voce’s helmet smashed against an opponent’s hip and Voce’s neck snapped back. The 17-year-old playersank to the field, never to walk again. For 15 months he stayed in hospital, and for the next 13 years, lay flat on his back, rarely leaving his room.
Since birth Connie Oxelgren, a Regina woman in her mid-20’s, has suffered from congenital muscular atrophy, a progressive disorder that has left her almost totally paralyzed, unable to even feed herself. Her dream of becoming a mental health counsellor seemed hopeless.
Thirteen years ago Wayne Murphy, a New Brunswicker now in his mid-30s, was left virtually quadriplegic after a car accident. He had almost no sensation below his neck and, after ten years in and out of hospital, believed he was useless.
Butch Voce, Connie Oxelgrenand Wayne Murphy remain seriously disabled. Yet today Voce has his own software business, Connie Oxelgren is completing her Bachelor of Social Work and diploma in administration of the University of Regina, and Murphy operates a computer security service from his own apartment in Fredericton.
Thanks to the legacy of an exemplary student – athlete, and the vision and ingenuity of a compassionate industrial designer, new opportunities have opened up for these three Canadians.
The story of their rehabilitation had its tragic beginning on an icy road in Nanaimo, B.C., on January 26, 1981, when a car skidded into a tree. As a result of this accident, Neil Squire, an excellent student and basketball star at the University of Victoria, was paralyzed below the neck.
Bill Cameron – an industrial designer, robotics expert and Neil’s second cousin – soon became a regular visitor to the Spinal Cord Injury Unit at Vancouver’s Shaughnessy Hospital. He was impressed by Neil’s medical care, but distressed by the fact that Neil could talk only in a barely discernible whisper and had no other way to communicate.Surely I can do more for Neil then read to him, Bill thought.
Bill grew up in Regina, and studied industrial design at the University of California at Los Angeles. During World War II he served in the U.S Marines. In 1972 he moved to Vancouver with his wife and the youngest of his five children, a teenage daughter. He went to work at TRIUMF, a research facility at the University of British Columbia, designing robots to handle hazardous materials.
A creative thinker with some 15 patients under his belt, Bill got the notion that Neil could express himself with Morse code. In an electronic shop he found a ham – radio device that translated Morse dots and dashes into words and displayed them on a screen. From the Kinsman Rehabilitation Foundation he got a “sip – and – puff” switch, which is activated by a person’s breathing. It was designed to operate a wheelchair, but Bill adopted it for the ham – radio device, and, with the aid of tape recordings, Neil learned how to produce Morse signals.
Then Bill attached an old Teletype machine to the switch. But although Neil could now write letters, the machine didn’t allow him to see what he was typing. So Bill thought of linking the switch to a personal computer. In March 1982, with grants from the British Columbia Ministry of Education and the Research Council(NRC), Bill hired two engineering students, Andrew Carpenter and Gary Birch, to help him develop his technical aids. By now he had learned of an interface that allowed a computer to operate using Morse code. Carpenter and Birch adapted the device, and soon Neil had a computer.
Neil learned word processing and in September registered for an accounting course. Two months later, however, he was calling the course “a disaster.” A woman from the College had left books and a schedule giving the time he should call to hear the lectures. But Neil could neither turn pages nor dial a telephone.
In October 1983, Neil was moved to an extended – care unit at Gorge Road Hospital in Victoria. Their Bill met other young disabled adults “going absolutely nowhere.” They faced the prospect of living 30 to 40 years with nothing to do but watch television.
Neil had gone as far as he could with the computer, and wasn’t able to consult books to learn more. So, with a grant from, NRC’s Industrial Research Assistance Program (IRAP), Bill hired two students to teach Neil and other disabled patients to use computers. The project eventually became known as the Computer Comfort Program.
Unfortunately Neil’s condition had been worsening, and in April 1984 he died of a massive undetected stomach ulcer. Neil had come to terms with death. “You know,” he wrote a letter to his family, “I’ve had a privileged life.” He asked to wear his runners in his casket – to be an athlete once again.
Peggy Cameron had previously suggested to her husband that they should form a nonprofit foundation to assist Neil and others like him. The Neil Squire Foundation became a permanent memorial after his death, with seed Money of $2000 given in lieu of funeral flowers.
Desmond Mullen, British Columbia co-ordinator for IRAP, was impressed with what Bill was accomplishing on a limited budget and wanted to help him expand the program nationally. So he accompanied Bill to Ottawa where, after a presentation to IRAP managers, the NRC offered financial support.
Bill immediately wrote to several hospitals and institutions proposing that the Neil Squire Foundation hire, train and pay instructors if they would provide space for them to work. Within four months the foundation had 12 instructors in several western cities.
By the spring of 1985 the foundation, and collaboration with TRIUMF, was working on a robot arm called MOM – Manipulative Obedient Machine. This robot would assist the disabled by turning pages, moving disc, or even serving a cup of coffee. Foundation engineers also developed systems that enabled quadriplegics to turn on lights, change TV channels, manipulatea VCR, shave with an electric razor, put on lipstick.
When May Wong Burrell, 33, a Computer Comfort instructor in Fredericton suggested to Wayne Murphy in September 1986 that computers might change his life, he was doubtful. So May took him to a demonstration.
After a year of lessons with May, Wayne got a contract to monitor computerized security system. It sends a signal to Wayne’s computer whenever one of the alarms is set off. Hephones the appropriate authorities by using his computer and its automatic dialing software.
In the fall of 1985 in Montréal, Shayna Hornstein, who had beenNeil’s physiotherapist at Shaughnessy Hospital, was told about Butch Voce by a member of her family. Disabled now 14 years, Voce was living at home without much to do. By February 1986, Shayna had organized some students, as part of the Computer Comfort Program, to teach Butch how to operate a computer using the sip – and – puff device.
When Shayna asked Butch in March if he would like to demonstrate his new computer skills at Vancouver’s Expo in 1986, he said yes. After four more months of study, he flew to Vancouver to participate in a demonstration, organized by the Neil Squire Foundation, of how robots and computers are helping the severely disabled to perform jobs. For Butch, Expo led to a contract with Xerox Canada Ltd. to do data entry.
When ConnieOxelgrenstarted University in 1982, she could still look after herself. But by 1986 her arm muscles had weakened dramatically, and she was forced to consider leaving school. Then she heard about the Computer Comfort Program. She contacted the foundation, learned the sip – and – puff method and has been using the computer for her assignments ever since.
Operating out of three small storefronts in Deep Cove, a Vancouver suburb, the Neil Squire Foundation works with a government – aided annual budget of about $2 million. But Bill Cameron says “the disabled don’t want a lot of money thrown at them.” What he hears over and over again is “a desire to contribute.” Handicapped people yearn to be able to give something back to society. Bill has provided them with the opportunity to do just that.
After learning to use a computer, Butch Voce became an instructor for the foundation. His first student was a young man who had severed his spinal cord in a diving accident. “It was a different perspective for me,” wrote Butch in a letter to the foundation. “For the past 17 years the flow of life was always towards me, people doing everything from feeding me to helping me back to bed at night. On this first day of teaching, however, I was the one doing the helping. I was the person responsible for the great big smile on the face of the student when he was able to type an entire sentence.”
There are smiles on many faces today because of Bill’s work and his conviction that the disabled can lead productive lives. That conviction is the legacy of Neil Squire.