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To the rest of the world, Canada seems like a jolly, supremely pleasant country, where we hold doors open with a smile, celebrate difference, and exude politeness to a fault.

Catherine McKercher’s Shut Away: When Down Syndrome Was a Life Sentence exposes a dark chapter of Canadian history: the neglect and abuse that went on in institutions for people with intellectual or cognitive disabilities. In Ontario, the last of these closed in 2009. McKercher’s brother, Bill, spent almost his entire life in one of them.

Bill was born with Down syndrome. When he was a toddler, their parents moved him to the Ontario Hospital School in Smiths Falls, later known as the Rideau Regional Centre.

“The rupture in my family always troubled me, especially after I had children of my own. As a parent, the idea of sending my toddler to an institution was horrifying. Unimaginable, in fact. Yet my parents, who were kind and loving people, somehow found it justifiable, even reasonable, to exile their youngest child because he had Down syndrome. And they were not alone; thousands of other parents of children with intellectual disabilities had made the same decision. The phrase my parents used to explain it — ‘Sending Bill to Smiths Falls was the best thing we could have done for him’ — became a family mantra of sorts, intoned whenever talk turned to Bill. I heard it countless times growing up, and I sometimes said it myself. No one wanted to believe my parents’ well-intentioned decision might have been the wrong one, or that there were other, better, ways for Bill to live. When my own children began to echo it back to me, however, it stopped me cold. By the time they met their uncle Bill, around 1990, the idea of shutting a child away simply because he had Down syndrome sounded like something from the Dark Ages. It was the stuff of nightmares.”

Bill died at Rideau Regional at the age of 38 of liver failure caused by a disease he caught simply because he was an institution resident.

Drawing on primary documents and extensive interviews, McKercher reconstructs Bill's story and explores the clinical and public debates about institutionalization: the pressure to “shut away” children with disabilities, the institutions that overlooked and sometimes condoned neglect and abuse, and the people who exposed these failures and championed a different approach.

 

Watch Catherine McKercher on TVO's The Agenda

 

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