Catherine McKercher’s Shut Away: When Down Syndrome Was a Life Sentence is now out in bookstores nationwide. It’s the story of her brother’s life and death in the institutional system for people with intellectual or cognitive disabilities. It’s also a story of hope and insight into the changes made since her brother’s experience as a life-long institution resident. It’s a unique blend of the personal and the public.
McKercher’s brother, Bill, had Down syndrome. When he was a toddler, their parents moved him to what was then called the Ontario Hospital School in Smiths Falls. He died there at the age of 38 of liver failure caused by a disease he caught simply because he was an institution resident.
In March of this year, McKercher published an article in the Ottawa Citizen, giving future readers a small glimpse of what was to come. She wrote: “. . . my parents repeated the same hopeful assertion so often it became a family mantra of sorts: ‘sending Bill to Smiths Falls was the best thing we could have done for him.’ How wrong they were.”
The Ottawa Citizen article introduced readers to the heartbreaking story of the problems with institutional care and, more specifically, the failure to care for her little brother, Bill.
This fall, she wrote a piece for the Toronto Star headlined, “My healthy baby brother with Down syndrome became a ‘mentally defective patient.’ Things could have been so different.” Had Bill been born 10 or 15 years later, she wrote, his life would have been much richer. “He might have gone to school with his brother and sisters. He might have learned to speak in full sentences. He might have found community activities to enjoy. He might have found a job. As an adult, he might have moved into a group home near us, or a family residence, or a shared apartment. He might have fallen in love and married. His family, and his community, would have been all the richer for having him with us.”
After the last of the Ontario institutions closed in 2009, former residents launched class action lawsuits alleging abuse and neglect. As part of the settlement of those suits, McKercher was able to access Bill’s resident file. What she found was shocking. McKercher’s book not only tells Bill’s story but sheds light on the history of the damage done to a vulnerable population in Canada under the pretext of “care.”
Carolyn Abraham, author of The Juggler’s Children: A Journey into Family, Legend and the Genes that Bind Us, says the following about McKercher’s memoir:
"Once in a while a book comes along that breaks your heart wide open — Shut Away is one of them, a gut-wrenching chronicle of a not-so-distant history, when society warehoused its most vulnerable members. With grace and clarity, journalist Catherine McKercher turns in a courageous memoir as she investigates what happened to her baby brother Bill, who was born with Down’s Syndrome in the 1950s. Sent to a “hospital school” from the age of two, Bill becomes the powerful lens through which McKercher explores her family’s experience and the government policies that gave rise to the massive institutions where children and adults with developmental disabilities were robbed of their rights, their potential, and love. Unsentimental and unflinching, Shut Away will make you weep for all the Bills and the crucial lessons humanity cannot afford to ignore from history."
At the end of her Toronto Star article, McKercher writes that the institutional approach stressed disability. “But people with disabilities are people, first and foremost. Their humanity trumps their disability, not the other way around. It has taken a long time, and a lot of false starts, for Ontario to grasp this idea, and even longer to put it in practice.
Shut Away sheds light on a part of Canadian history that most know little to nothing about. Bill’s story represents the stories of many others who experienced the same kind of injustice. As Carolyn Abraham says, it offers a lesson that can’t be ignored.
You can meet Catherine Mckercher in Winnipeg on November 13th.