Book Review: “Shut Away: When Down Syndrome Was a Life Sentence”

by Franke James

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 [TVO Agenda], “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. Some have 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.