Pushing
past barriers
Sydney Mills-Cooper

At 18 months, Sydney Mills-Cooper was diagnosed with spinal muscular atrophy, a degenerative condition that causes a gradual loss of muscular control and strength. By the age of four she was in a wheelchair.

But Sydney was determined not to be defined by her condition. She went to kindergarten at the Catholic elementary school down the street from her home in Ajax, Ontario. Her family declined the school’s offer to pick her up in the school bus, not because they had their own wheelchair-friendly vehicle but because she wanted to do what her friends were doing: walk to school.

With Sydney riding in her motorised wheelchair and her father walking next to her, the trip took ten minutes — more when neighbours hadn’t shoveled their sidewalks, less when her dad let her go full throttle. And it’s how she got to school for the first ten years.

That feeling of relative independence and doing what everyone else is doing is what Sydney, now 19, has always pursued. And it’s in line with the objectives of the education system. Since the 1970s, there has been a push to no longer segregate kids with disabilities into separate institutions or special-needs classrooms. Mainstreaming, as it’s called, enables roughly 60% of children with disabilities in Canada to attend the same schools as their friends and neighbours. The goal — to reduce stigmatisation and provide students with disabilities the same opportunities as their other peers — is a good one. But the execution presents huge challenges.

Sydney enjoyed elementary school. She was fortunate to have a local school with elevators that could accommodate her and a father who advocated tirelessly to ensure she had a dedicated Educational Assistant throughout the day.

But things got more complicated in high school, where her entitlement to her own Educational Assistant was underconstant threat.

“When you look at me, you might think I don’t need help,” says Sydney. While this could be a source of pride, it also meant that she was often overestimated. In fact, Sydney can’t open her own computer, or take a cap off a marker. She needs help adjusting herself within her chair. She can’t raise her hand to ask for help. Choking can be fatal.

Nonetheless, the school wanted Sydney to share her support person with other special needs students, despite the fact that Sydney — unlike all the other special needs kids in the school — aspired to graduate with full credit. As a result, she was often surrounded by kids who were playing games, making noise and distracting her.

“For some of them, I was just a disability, not a person...”

She believes that most teachers did their best, but found that some babied her while others made her feel inferior for not keeping up with the rest of the class. In Grade Nine, the school assumed she wouldn’t be able to do gym and put her in a Grade Ten food and nutrition class instead. But even if she couldn’t play the sports her friends were playing, Sydney wanted to at least understand them and she insisted, successfully, that she be allowed to stay with her class. After graduating high school, Sydney wanted, like most of her friends, to continue her education. She applied to Humber College’s digital communications program and was accepted. And like most of her friends, she wanted to live on campus in residence.

She also got worn down by the rotation of nearly a dozen Educational Assistants. “For some of them, I was just a disability, not a person, not a teenager,” she says, explaining that the relationship is by definition highly personal and hands-on.

It was an ambitious undertaking. Sydney applied for and was granted funding for both day and night shift attendants, but with the residence unwilling to provide an additional bedroom for the attendant, the arrangement fell apart. Now in her second year at Humber, Sydney is back in Ajax, living with her father and commuting to school — a two and half hour trip that involves a Go Train, subway and bus. She rarely gets home before 11 at night.

“Some days I’m too tired to go,” she says.

Now she’s on the lookout for shared housing in Toronto, closer to Humber, but not overly optimistic about finding something accessible and affordable in one of Canada’s most overheated real estate markets.

Life was easier for Sydney when her radius was smaller, but she’s not giving up. “It’s all about accommodation,” she says, and she is not referring to housing. “And good friends.”

11% of persons with disabilities in Canada are choosing to end their education early because of their disability

37% of persons with disabilities in Canada are taking fewer courses because of their disability.

Persons with disabilities

end their education early because of their disability.

take fewer courses because of their disability.

Data source: Canadian Human Rights Commission’s 2017 report

In 2017, the Commission published the report Left Out: Challenges faced by persons with disabilities in Canada’s schools. The report shows that for many people with mental or physical disabilities, Canada’s education system can seem like a closed door. Among other findings, the report documents that 37% of persons with disabilities in Canada are taking fewer courses because of their disability, and 11% are choosing to end their education early because of their disability. The report is part of a Commission research series aimed at monitoring Canada’s implementation of the United Nations Convention on the Rights of Persons with Disabilities.