My brother Bill would be 65 this year. Retirement age. I like to imagine he’d have mixed feelings about leaving his job, whatever that job might be. He’d be sad because he’d miss the chance to laugh with and play tricks on his co-workers; happy because he’d now be able to spend days in front of the TV, drawing with crayons and creating his own art. I like to imagine he’d do this in a home he shared with people he loved, maybe in a community run by L’Arche, or a group home, or maybe in an apartment with a spouse. My dreams of what Bill’s life might have been like are small and ordinary, but they centre on what makes life worth living: a home, a job or other occupation to fill his days, a chance to love and be loved.
Bill never got to live those dreams. That’s because Bill was born with Down Syndrome, and in 1956 that was a life sentence.
Literally.
When Bill was 2 ½ my parents did what all the so-called experts, including their own family, advised them to do. They moved him to the Ontario Hospital School at Smiths Falls, ON, an hour away from our house. He never came home again. Officially classed as a patient until Ontario brought in some reforms in the 1970s, Bill grew up in a series of overcrowded, under-staffed dormitories the authorities called wards.
He never learned to read or count or write or speak more than a dozen or so words, though, like most people with Down Syndrome, he was probably capable of all of this. He spent his 20s taking a powerful barbiturate to treat epilepsy, a condition he didn’t actually appear to have. From the time he was 9 or 10, he pulled out his own hair in what I think was a misunderstood attempt to ease some crippling anxiety. Nonetheless, he made some friends among the residents and the staff. In his 30s, he enjoyed going to work in the institution’s wood shop, though more for the camaraderie than the job. He loved a good laugh. He loved our parents, especially our mom. But his joys, such as they were, were short-lived. Bill had chronic hepatitis B, contracted at the institution when he was a child. He died of liver failure in 1995 at the age of 38.
Bill’s exile from our home meant that his sisters and brother were deprived of his company, except for once-a-month family visits to Smiths Falls. The older we got, the less Bill felt like part of our family and the more painful those visits became. One by one my sister Mary, my brother Bob, and I stopped going to see him regularly . . . or at all. We never got the chance to know and love Bill for the brother he could have been. We all suffered from the rupture in our family, though Bill suffered most of all.
After Bill died, after the institution where he lived shut down, and after former residents of it and others like it sued the Ontario government for abuse and neglect, I was able to learn the details of Bill’s life on the inside. As part of the settlement of the suits, the government deposited thousands of documents in the Archives of Ontario. The settlement also allowed me to get a copy of Bill's residential file. Painful though it was to read these documents, they helped me trace the rise and fall of the institutional system for people with intellectual or developmental disabilities, a system that saw people like Bill as too deeply flawed to occupy a place in the wider world. No one should ever have to live like that again.
Every March, as World Down Syndrome Day approaches, I think of how different Bill’s life might have been had he not been sent away. And I take some special pleasure in marking a day that promotes inclusivity, encourages advocacy, and supports the wellbeing of those living with Down Syndrome. We still have a long way to go to reach full inclusivity, but it warms my heart to know that today people like Bill have the chance of a better life. I hope things will be even better for the next generation.
By Catherine McKercher, author of Shut Away: When Down Syndrome was a Life Sentence