An explosive book that exposes the abuses of institutionalization.
"How many brothers and sisters do you have?" It was one of the first questions kids asked each other when Catherine McKercher was a child. She never knew how to answer it.
Three of the McKercher children lived at home. The fourth, her youngest brother, Bill, did not. Bill was born with Down syndrome. When he was two and a half, his parents took him to the Ontario Hospital School in Smiths Falls and left him there. Like thousands of other families, they exiled a child with disabilities from home, family, and community.
The rupture in her family always troubled McKercher. Following Bill's death in 1995, and after the sprawling institution where he lived had closed, she applied for a copy of Bill's resident file. What she found shocked her.
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.
Franke James on Goodreads wrote:
I could not believe the inhumane way people with mental disabilities were treated at Rideau Regional Home ! Absolutely shocking! I have 2 brothers with developmental disabilities 1 was placed at Rideau Regional for about one year as to the reason why I don’t know but I do remember going to visit him with my mom ! This is an amazing book! Thank you for writing it!
As a sibling and caregiver to my 55-year old sister who has Down syndrome, "Shut Away" was a book I couldn't put down. I heard about it from a medical researcher on Twitter who highly recommended watching Steve Paikin's interview with the author, Catherine McKercher:
"Ten years ago, the doors of Ontario's last residential institution closed. It was the final chapter in decades of public policy that saw people with developmental disabilities isolated from the community, and where some experienced abuse and neglect. Catherine McKercher's brother Bill was a resident of one of those institutions. She joins The Agenda to discuss her book, "Shut Away: When Down Syndrome was a Life Sentence."
"Shut Away" is a heart-wrenching and painful personal story beautifully told. McKercher's skills as a journalist and researcher are evident throughout -- nobody else could have written this book so well. She digs through court filings and health records to help us understand the suffering that residents experienced as a result of the forced incarceration. She helps us feel the social pressure that her parents faced by having a child with Down syndrome -- and why they would decide to institutionalize their child. McKercher also gives us historical perspective on the class-action lawsuit that finally wrested a historic apology from the Ontario Premier (Kathleen Wynne) in December 2013 -- that's a mere six years ago.
McKercher's book gave me insight into my own parent's decision, and the sea change that happened in less than a decade. The author's brother was born in 1956, and institutionalized as a toddler for the rest of his life. Between 1956 and when my sister was born in 1964, advocacy groups rose up to assert the human and civil rights of people with Down syndrome to live in the community -- and not be locked away in dehumanizing institutions. McKercher's book helps me to appreciate that my sister is a lucky beneficiary of the early wave of activists (of which my mother was one) who fought for inclusion in schools, and in the larger community. They helped lobby for the closure of institutions which has taken many, many decades.
"Shut Away" is an important book especially because backsliding is happening right now. While the institutions have closed, thousands of people with intellectual disabilities are now being warehoused in long-term care homes. The United Nations' Special Rapporteur, Catalina Devandas Aguilar, reported in 2019 that "the deprivation of liberty on the basis of disability is a human rights violation on a massive global scale."
Society needs to be reminded of the terrible injustice and permanent harm that forced institutionalization has done to people with intellectual disabilities. The segregation of people with Downs is an appalling human rights violation. Jean Vanier, the late founder of L'Arche, said that people with intellectual disabilities are amongst the most oppressed people in the world. I agree. "Shut Away" is an important contribution to disability rights as it will educate readers today, and help ensure that history will not be repeated.