Sheila Bujold 1967-2003

(Reprinted with permission of the author, Ron Csillag. Originally published in The Globe and Mail on Saturday, February 8, 2021))

Sheila Bujold had a simple dream: to live in her own place, by her own rules. She did that for a year — a glorious year of independent living — before succumbing to a stroke and a cancerous brain tumour on January 5 at the age of 35.

On paper, Ms. Bujold certainly didn’t seem intellectually disabled: She traveled from Toronto to see her parents in Quebec by herself, switching trains in Montreal; worked four days a week as a receptionist, enjoyed chop-socky action films; and spoke both English and French with no trace of an accent.

But she knew her limitations. “It doesn’t bother me,” she said a few years ago of her disability. “I know what it means. It means I’m handicapped. That I have ways of not understanding things. Of not learning things.”

On the other hand, she eagerly and happily undertook that which so many “normal” people consider their most knee-weakening phobia: public speaking. Before hundreds of people, she regularly expounded, with clarity and can four, on her life experiences to supporters — both established and potential — of the United Way and Community Living Toronto (until recently, the Toronto Association for Community Living), for which she became something of a poster girl for the successful integration of the intellectually disabled into mainstream society.

Ms. Bujold was an eloquent spokeswoman/fundraiser for community living, helping to dispel the myth that the mentally retarded, as they were once called, need to be warehoused or relegated to sheltered workshops.

“Her articulation skills were wonderful, and she felt she had a real story to tell,” said Sheila Magee of Community Living Toronto.

Ms. Bujold needed no cajoling. She volunteered for the speakers’ bureaus of both CLT and the United Way, for which she addressed three or four lunches a year for three years, easily fielding questions from the audience.

In fact, life wasn’t easy for her. She was born in New Richmond, a small community in the Gaspe region of Quebec, the eldest of three children.

At the age of 3, after a hospital stay for a bout of measles, “she asked me where those lights were,” recalled her mother, Delena. Tests in Montreal revealed a plum-sized brain tumour, which surgeons removed. She developed epileptic seizures, which were controlled by medication. But which in turn made her overweight. She withdrew, taking up quiet activities such as drawing.

At school, the other children would tease her as “retarded,” she would later recall. “They’d tease me because I’m big. They would make me feel terrible.”

Her brother Joey concurs. “She was picked on a lot But she never argued back. She never complained, no matter what.

Even after failing Grade 5, she soldiered on, graduating from high school in a vocational stream, and dreaming of the big city. Her reluctant parents, aware of the lack of social services in the Gaspe, let her move in with an aunt in Toronto at the age of 17. Over the next 16 years, she lived in a group home and with two foster families, volunteering for a variety of programs and weaving a wide web of friends.

It was Ms. Bujold who helped others worse off than she. “Sheila would help them at lunchtime to open their can of pop, put sandwiches on a plate or stir their coffee or tea,” Ms. Magee said. “When it was time to go home, Sheila would button coats, tie scarves and help in any way she could.”

She put her artistic skills to good use with homemade birthday cards for everyone in her workshop, using a large calendar to keep track. She made 172 cards a year, complete with verse, in addition to hand-knitted baby booties and blankets for anyone who asked.

“She had a way of winning over people,” said her brother Joey. “She had natural charisma.” She often crooned her favourite song, Bette Midler’s The Rose.

Although limited in her math skills, “she knew the value of a dollar better than anyone,” her mother said.

She had to, surviving on a token salary of $1 an hour and a monthly disability cheque from which she paid rent, bought a transit pass and saw the occasional Jackie Chan flick.

She had two boyfriends, but ever the pragmatist, was careful about not getting pregnant. “She used to say, ‘Mum, I have so many problems looking after myself, I couldn’t look after a baby,’” her mother recalled.

She was reminded of her disability almost daily. Following work, when she boarded the bus with her co-workers, some of whom had visible defects, she would hear the barbs. “I wish people would not call us stupid,” she said. “God made me this way. I have a heart and feelings too.”

A sweet smile and ever-present charm belied her grit and gumption. She locked onto her life dream like a missile, and after waiting for an independent-living space for years, Ms. Bujold finally moved into a basement apartment in Toronto in December, 2000, sometimes joining her landlady for a cup of tea and some TV. She was giddy with joy, and had “a great social life,” according to Ms. Magee.

But just a year later, she was felled by a stroke. Doctors removed about half of the mass from her brain, and further tests showed the return of brain cancer. Although paralyzed on her right side, she rallied somewhat, but died a year after her surgery.

She was the subject of a Lunch With column by the Globe and Mail’s Jan Wong in September, 1998, following which Ms. Bujold faxed in a handwritten thank-you note: “My sister Chantal said she had went to see her doctor and he had seen the article and he said, ‘Is Sheila Bujold your sister?” And Chantal had said yes, why? Well, I think she’s a smart sister!”

Sheila Bujold, volunteer, spokeswoman for community living; born in Montreal, June 21, 1967; died in Toronto Jan. 5, 2003.

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