Anything’s Possible!

By Lynne Swanson

Sam Sullivan is often mistaken for a paraplegic. "My goal is to be a paraplegic when I grow up, but right now, I’m a quadriplegic."

Injured in a skiing accident, Sullivan spent seven years "sulking" as he "tried to avoid the issue" of having a disability. Finally deciding to get on with life, Sullivan moved out of his parents’ home, went on welfare, and rented an apartment in Vancouver’s "ghetto."

When Sullivan found himself unable to turn his apartment doorknob or use his toilet, realities of life as a person with a disability set in. For months, Sullivan "got into [his] van and drove to the hospital to use the accessible washroom."

"Amazed there was no place in Canada in the twentieth century to deal with these issues in our lives," Sullivan wrote a letter to Vancouver’s professional engineers society.

Soon "nothing short of an angel," engineer Paul Cermak, appeared in Sullivan’s apartment and life. Cermak worked "more or less full-time for about six months solving so many vexing problems."

One of the pair’s earliest successes was a sliding seat borrowed from a rowing machine so Sullivan could use the toilet in his own home. Then came a restructured knife so Sullivan could butter bread. With a device for opening curtains, Sullivan discovered a whole new world outside his windows.

Next, Cermak and other engineers worked on projects for members of Sullivan’s peer support group. The group quickly realized they were onto something exciting, resulting in a dynamic and ingenious venture.

That enterprise became Tetra Society of North America, with chapters from Victoria to Halifax, and into the United States, including Washington, California, Texas, Alaska and Ohio. Sullivan, Tetra’s executive director and a Vancouver city councillor, has long since left social assistance and the ghetto behind.

One of the earliest Tetra chapters outside Vancouver was in London, Ontario. In two years, this chapter grew into the largest and most organized in North America, with over 55 projects completed and more in progress.

London engineer Jean Surry was "intrigued" when she heard about Tetra on CBC Radio. After obtaining details from Sullivan, Surrey contacted the "London Free Press." Shortly, efforts of Surrey and Audrey Harris, a woman with arthritis, to establish a chapter were front-page news. As a result, more than 50 people attended the first meeting.

"London is a mythical place," Sullivan proclaims. "We’ve never had 50 people to a meeting in Vancouver!"

Sullivan was further astounded when he travelled from temperate British Columbia to London to discover more than 100 people -- representing engineers, technicians, health care professionals, advocacy groups, and people with a range of disabilities -- turning out in the depths of one of southwestern Ontario’s coldest winters to hear him speak about the organization’s goal of seeking low-cost solutions to the myriad of barriers people with disabilities encounter daily.

One of London’s first undertakings was for a wheelchair user unable to reach dials on the back of her stove. Retired auto body teacher and Tetra volunteer, John Hogg, went on a scavenger hunt to Goodwill. He spied golf clubs and knew a shaft would make an ideal handle. Hogg fastened the handle from a lawn mower start cord to the end of one of the shafts for the solution. He fashioned a similar device so the same woman could do laundry in coin-operated machines.

"That’s what Tetra’s all about -- simple solutions to difficult problems," explains Tetra volunteer and occupational therapist, Linda Flegle.

Hogg’s most recent endeavour was a special tricycle so Patrick Crawford, who had had childhood polio, could cycle with his sons. Hogg used scrap bicycle parts to build a tricycle which is pedalled by hand, braked by foot and has three wheels for balance. Crawford says the design had to be very specific to his needs, so construction took some time, but "John really persevered."

Over the winter, the tricycle is undergoing "fine tuning" because Crawford "just want[s] to go faster!"

Camaraderie and challenge is what it’s all about for many Tetra volunteers. Mechanical engineer Frank Stauder claims he’s a "closet inventor. I really enjoy being given a problem that no one else has ever solved and to be able to dream and come up with a solution. I particularly find it enjoyable when you help someone personally with that. You can change one person’s life. That’s really powerful."

One life he helped change was that of Blanche Kormarek, who has arthritis and fibromyalgia. Unable to sit or stand for extended periods due to severe chronic back pain, Kormarek required a computer stand from which she could keyboard while reclining on her side.

Kormarek’s husband designed one, which was modified after discussions with Stauder. "A kind of weird angle in space" was required, Stauder explains, so that Kormarek could use it for a while lying down, but the stand must bear the changing force of typing.

Cognizant of keeping costs down, Stauder "went off to the landfill site, but they wouldn’t let me in!" When a work colleague threw out an old swivel chair, Stauder nabbed it. He placed a board on the chair’s base swivel mechanism, secured it with drainpipe and used hardwood for joints. "It took a lot of trial and error," Stauder recalls, but eventually he met Kormarek’s needs.

Kormarek also has difficulty holding a book or a pen for extended periods. So this avid reader also uses the stand, which can be adjusted with long handles for height or distance, to hold novels or a writing pad. Many who have seen the creation have commented on its multi-uses, including a painting easel, drawing board, or food tray that can swivel over one’s bed or couch. It is light enough for moving between rooms.

A chapter doesn’t have to be big like London’s to make a difference. The William’s Lake, B.C., chapter consists of one volunteer with "an inquisitive and inventive mind and a fairly decent workshop." Retiree Mickey Halsall has worked with occupational therapist Angela Laprairie on dozens of projects, including a frame for electronic drums for a woman who couldn’t speak and could only move her right leg. "Now she’s bashing away on those drums whenever she gets the chance," Halsall says. "Tetra works so well in a small community where it’s neighbour helping neighbour," Laprairie confirms.

Coast to coast, Tetra projects relate to people’s real lives and needs. A Halifax woman uses her apartment intercom, which her building superintendent insisted for 20 years could not be adapted for her requirements. A Vancouver wheelchair user with a retractable canopy arrives dry at work in B.C.’s downpours. A woman with multiple sclerosis bird-watches in western Canada’s majestic outdoors with a tripod mounted on her scooter. Toys are adapted and built for children with disabilities. A native Canadian woman is in "seventh heaven," spinning wool again, reliving fond memories of her grandmother and feeling a link to her Cowichan heritage.

A Montreal executive "zooms" around his office without spilling the water he requires on a constant basis and which he keeps on his wheelchair tray. A Calgary boy who is small in stature sees "eye to eye" with Grade-one classmates in an adjustable chair with telescoping legs.

A Sarnia driver fastens her seat belt with a "corkscrew device." An Edmonton woman with quadriplegia exercises her arms on a "skateboard."

A seven-year-old girl was toilet trained with a musical potty. An Alaska man snowmobiles on adapted equipment. And Sue Rodriguez fed herself in advanced stages of ALS with a Tetra-built eating machine.

Tetra will not compete with commercially available products. In London, before beginning projects, volunteer occupational therapists and physiotherapists research assistive devices on the market. Some distributors are Tetra volunteers. "They really seem to enjoy the freedom to invent and getting down to the nitty-gritty of how to make things," Surry says with a smile.

Sometimes projects may involve adapting commercial items. Norman Hills, London’s volunteer project manager, says the chapter has tried since its inception to find a solution to alert family when a loved one with early stages of Alzheimer’s disease wanders. They recently located a child monitor which they may be able to adapt.

Some prototypes of earlier Tetra projects, such as a rail for transferring from wheelchair to toilet/shower, and a "standing chair" that raises a person with leg weakness from sitting to a standing position, are being developed and tested for possible production. But Tetra’s focus remains quality of life for individual people with disabilities by meeting unique one-of-a-kind needs.

When Tetra received the Peter F. Drucker Award for Canadian Non-Profit Innovation, Prime Minister Jean Cretien sent a congratulatory note. "Tetra has shown that people with disabilities need not settle for ’getting by in everyday life, but can enjoy greater independence and participation in the world around them. I commend the volunteer specialists and -- above else -- the foundation’s clients, whose insistence on living life on their own terms has spurred the Technical Assistance Program’s outstanding design innovations."

Tetra’s success is best summarized in a quote at the beginning of its annual report: "At Tetra, we don’t make it easy, we just make it possible."

(Lynne Swanson is a freelance writer whose column, "PosAbilities," appears in the London Free Press. She is also a full-time Human Resources Coordinator who has had multiple sclerosis for 11 years.

CHAPTERS AND CONTACTS OF TETRA SOCIETY

Tetra’s "eager-beaver tech heads" enjoy new challenges. Some chapters find they have enthusiastic volunteers, but not always enough projects, so requests are always welcome.

For more information, please visit www.tetrasociety.org. Inquiries may be submitted by e-mail - info@tetrasociety.org or by phone, toll free at 1-877-688-8762.