When Down syndrome was a life sentence

As a child, Catherine McKercher always told people she had two siblings, but that wasn't the truth. 

Her brother, Bill, who was born with Down syndrome, didn't live at home. 

"The truth was just too complicated. We had four children in the family, [but] the youngest of us didn't live with us," she said. "It was just easier over the years to say there's just three of us."

I have very few memories of him when he was living at home, but I do remember he had a terrific laugh.- Catherine McKercher, author

McKercher, a former Carleton University journalism professor, has written a book about her brother and his treatment at the Ontario Hospital School, an institution in Smiths Falls, Ont. 

Shut Away: When Down Syndrome was a Life Sentence chronicles both her brother's story and the broader history of the institutions in which children like him lived — including the slow process of shutting them down.   

Few memories

Bill stayed with the family until he was about two, but would spend the rest of his life at the institution. He died there from liver failure at the age of 38.

"I have very few memories of him when he was living at home, but I do remember he had a terrific laugh, and he loved to laugh and we liked to perform for him," McKercher told CBC's Ottawa Morning. "He was the world's best audience."

There were several institutions across Ontario that housed people with intellectual disabilities, and McKercher said it was common when her brother was born in the 1950s for families to send children to live there.

"If you had a child with a handicap, there was something kind of embarrassing or shameful, especially if it was an intellectual handicap," she said.

'Violence to your soul'

Delving into her brother's file, McKercher found many instances when psychological or medical issues were ignored. The institutions were crowded and noisy, and many patients suffered abuse. It was no place for a child to grow up, she said.

"Just the day-to-day life in an institution did violence to your soul."

During her research, McKercher discovered that the government knew the institutions were failing residents, but reform was slow to come. 

"The province knew for a long, long time that these facilities were not delivering progress and happiness, but changing the system was not easy," she said.

McKercher's parents had both passed away by the time she received Bill's file. She said those discoveries would have been difficult for them.

"It would have been hard to do this book while they were alive, because they would have had to confront all our failings on this," she said.

McKercher said she had a part in that, too.

"I should have been a better advocate for him. I let him be my parents' child, rather than my brother."