Shut Away: When Down Syndrome Was a Life Sentence

by Catherine McKercher

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 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.

Genres: Nonfiction

264 pages, Paperback

Published September 3, 2019

Reviews

[Petra X · Rating 3 out of 5]

Changed my mind, I'm going to finish it. This book might be of much more interest to Canadians. There is a lot about city and government policies, standards of care and statistics. The author is utterly disingenuous about her parents. There wasn't enough about Bill, her brother, as a person, only how he was treated, what the staff of the institution (a caring place) said about him. I just lost interest. I'm giving it 3 stars because it isn't a bad book, it isn't badly written, it's just not for me.
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This is very difficult to read. The author's brother lived in a school for children with intellectual impairments. He was placed there because everyone from doctors to friends recommended the parents do that although as a baby they did try to raise him at home. The author is trying to understand her brother's life. The difficulty is not an emotional one to the reader, although the author says that there was no understanding of how a child with Downs syndrome could enhance a family's life back then, no, it is one of plowing through the prose.

The author requested her brother's file from the home he lived in and then spends pages taking apart the forms, the eyes glaze over. The mother has written that she doesn't want him prepared to be returned to the community unless he becomes 'more advanced' although everyone knows he's not going to be. At 20 his intellectual development is, "He recognises his name and similarities in numbers, colours and shapes. He likes to keep busy and his skills in tracing, colouring, pasting and cutting are improving." He could name blue, red, brown and yellow 'with some help'. On a six week course, he learned to say two new words.

Personal experience: It is very difficult to look after someone with that level of impairment. It means that the mother, inevitably the mother, will have to give up her life entirely for 24/7 care. I grew up across the road from a family with a child with Downs. The village was small, maybe 40 people. These people were working class living in a miner's cottage (lovely, hob to cook on by the fire from the old days), and the mother couldn't work, she had to look after her son. Her teenage daughter, my friend, couldn't buy new clothes, records and go out too much because there wasn't the money. She had to stay in when we were all going out so her mother could get on with shopping or go to the post office. It was too hard to take him out.

I didn't know him very well, he was big, his tongue hung out, he drooled and he couldn't speak much. He was very friendly and always wanted to hug me. It might be politically incorrect to say so but I didn't want this big guy drooling all over my face, I really didn't. And I didn't think I would ever be able to handle that kind of life.

I do know several people with children with Downs (they are not Downs children, Downs is not the most important thing about them, they are people first). You can have a conversation with them, they have lives, they aren't so impaired that they need total care but nonetheless, the fathers all left the women within a few years. Maybe if they'd lived in a big country with a lot of facilities and more money coming in the marriages might have survived.

How would you know when you have an amniocentesis that your child would be able to have an independent life or would need 24/7 care? It is a Christian concept to say that God is testing you, doesn't send more than you can bear and you'll be rewarded in the next world etc. Self-sacrifice for women of every culture is what women are always supposed to do. I don't see that giving up your life to be a carer is a good thing. But, these group homes, or at least the one in the book, caring as it might be, just destroys any individuality in the child, and I wouldn't want that for my child either. The heartbreak for the child of only having home visits (the author's mother did not want home visits) or very rarely being visited. The children's intellect is impaired, their emotions, far far less so.

So I had an amnio and everything was all right.

I don't know how much more of the book I want to read. It's difficult to get through, very upsetting and has too little of the personal and too much statistics.

[Franke James · Rating 5 out of 5]

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."
http://podcasts.tvo.org/theagenda/aud...

"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.

[Brandy · Rating 5 out of 5]

As a parent of a child with a disability I appreciated this book. We sometimes forget the recent history that was institutions. I appreciated that this book waa written in a way that connected history, legal issues, policies/practices etc to her personal family experiences. Great thought provoking and at times emotional read.

[Liralen · Rating 4 out of 5]

After our parents took Billy to Smiths Falls, writes McKercher, my brother never came home again. Never. (90)

When McKercher's brother Billy was born in the 1950s, the plan for children with disabilities was simple: send them away. Billy had Down syndrome, and so Billy was sent away—against McKercher's mother's wishes and best judgement, but in line with what society believed about disabilities at the time.

Because Billy was, from the time he was sent away, in the periphery of McKercher's life—by chance and by institutional design—this is not really a book about Billy. He is the glue that holds the book together, but it is impossible for McKercher to know the exact shape of his life: instead she has hundreds upon hundreds of pages of maddening, incomplete documents and forms about him; she has what she knows and does not know about her parents' perspective; she has the history of the institution Billy was sent to and others like it. Returning again and again to Billy's experience—the parts of it she can know, and the parts she cannot—McKercher does a brilliantly researched job of illustrating the complicated, shut-away life of institutions.

Attitudes were changing even as Billy was sent away, and if he'd been born even ten years later chances are that there would have been more voices saying 'Raise him at home.' It's important to note that this is not a book about blame—in sending Billy to an institution, McKercher's parents were doing what just about everyone around them, to say nothing of the medical establishment more broadly, said was best for him and for the family. McKercher is very clear about that, just as she is clear that Billy almost certainly would have been better off had he been allowed to remain home. Institutions like Smiths Falls might have been founded with good intentions—and many of the workers may have been wonderful—but problems plagued them from the beginning: overcrowding, understaffing, lack of personalized treatment, infectious diseases that were so endemic in the institutions that in some cases they didn't bother to take basic precautions to prevent their spread. Neglect and abuse, though those certainly weren't named in Billy's file, were almost certainly de rigeur, though to what extent is unclear.

In writing Shut Away, McKercher asks readers to look at the reality of 'out of sight, out of mind'. Also worth looking at We Used to Dance and Hazard for stories of families making decisions in similar contexts, but with very different details.

[Michelle · Rating 4 out of 5]

This book is incredibly moving and covers topics including the history of institutions in Ontario for people with intellectual disabilities, and the stigma of having a child/family member with a disability during and before the mid 20th century. It was heartbreaking to read about how so many people died and endured abuse and neglect due to the widespread ignorance that was present only a few decades ago. On a positive note, there has been quite a bit of progress made in terms of the support that is given to people with disabilities, but there's still a long way to go.

Along with many anecdotes, Shut Away included a lot of facts and statistics. At times I wished that the information could have been broken up a bit to make it more digestible, but that's just me nitpicking. Even though some chapters were more dense, the content was still engaging. This book will make you feel a wide range of emotions, but I recommend it to anyone who is interested in learning more about these topics and building empathy for the many people who experienced unfathomable injustices committed by institutions, medical professionals, and the government.

[Wilhelmina Hoftyzer · Rating 5 out of 5]

As the author states: " this book is mainly a work of history, examining the origin, rise, and fall of the institutional era in Ontario. The fact the institutions are closed is something to celebrate, but we still have a long way to go". In fact, this book is a damning account of the institutional era of Ontario, and pretty well heart wrenching to read. The author weaves the account of her brother Bill, a child born with Down syndrome in the 1956 to a middle class family In Ottawa, Ontario and who was institutionalized at the Ontario Hospital in Smith Falls, Ontario (later the Rideau Regional Center), at the tender age of 2.5 years. His parents and family visited him once a month, for the rest of his life. By all accounts, and in hindsight through the research of his sister after his passing, his short life was very difficult. McKercher gives a detailed history of the Ontario Hospital system for the care of "imbeciles and idiots" - words that makes one cringe. These people, and those with other mental handicaps were to be locked away, never to be thought of again, they were considered to be a "stain" on society. They often lived in overcrowded facilities, with no personal belongings, and were treated as if they were not human beings who had thoughts, feelings, rights of their own. Certainly the author's parents were intelligent and had the financial means to have found alternatives for the care of their son, because even as they admitted their son to the system, a movement was growing to keep these children at home, with more social supports. But these children were considered to reflect on the family, and it was encouraged for families to send these children away and "throw away the key." Bill lived his entire life in the system, and died as a result of contracting Hepatitis B in the hospital system. He had virtually no vocabulary because he never had the opportunity to learn - he was warehoused until he died. What a tragedy - to be treated as less than human - to be literally stripped naked and made to stand in a line for a weekly shower, doused with water by one staff, soaped and shampooed by another staff, moved down the line to be rinsed, and dressed. Accounts of residents being force fed, sexually exploited, physically assaulted, emotionally abused were heartwrenching to read. And to imagine that a civilized society, proud of its human rights would have treated the most vulnerable in this way. Just a damning report on the callousness, and cruelty that went on behind the locked doors and the well manicured lawns of the "Ontario Hospital System." Eventually the doors closed, the residents moved to group homes, but Bill was not moved, and died there while others were leaving. The author skillfully weaves the account of his life through the history of the system, and expresses regret for the brother she never really knew. As of 2021, even though there are now group homes, the residential system is still in full force - in the nursing home system in Ontario and beyond. Some people with Down Syndrome were moved to these facilities also. They also warehouse the elderly, the demented, the physically handicapped. When Covid 19 made its way through the world, it attacked these homes with a ferocity, and 70% of deaths due to this disease occurred in the nursing home system where families are forced to put their elders, because after all these years there is no other system in place to support these residents and their families. As with Bill, many of the residents are not able to account to their loved ones, what really happens behind closed doors. As with Bill, the parents may visit for several hours once a month, once a week, once a day, but there are many hours where Bill and the residents of care homes today are under the complete control, and manipulation of staff members who may or may not be suitable for their jobs. This book is an important, eye opening book, and the history of the "Ontario Hospitals for the Insane, Idiots, and Imbeciles", plus the residential schools in the history of this country, is a tragic reminder that we are doing the very same thing to our elderly in the exploding industry of elder care. A very well written, poignant, heart wrenching book - a must read for anyone who thinks that institutionalization is the best route to take care of those who are no longer valuable to society.

[Gillian Sullivan · Rating 5 out of 5]

Excellent read. Thought-provoking, and heart-breaking, in many ways. It's hard not to think about one would have done oneself, as the parent, the sibling, or as a worker in an institution, in a time when there were fewer options and "normalcy" had a narrow band. Ms. McKercher is a brave and caring sister, willing to share insight into her family's dynamics and raise the questions that have haunted her. It's sort of understandable that Bill's life was what it was, given the times, but also the question "Why? crops up again and again.

[Clare · Rating 4 out of 5]

This is the second sibling disability memoir I've read recently and it was a good summary of the history of institutionalization in Ontario and a moving account of one family's experience. Like the author, who grieves the life her brother might have had, I felt anger at the evidence of ill-treatment and abuse as discovered through documents and survivor stories. But it's especially enraging to know that Pierre Berton reported on the institutions in 1960, almost 50 years before they were finally closed.

[Crystal Sissons · Rating 5 out of 5]

This is a very challenging but necessary read. It is made even more readable by the fact the author contextualizes her family situation with well-researched evidence about the changing nature of institutional care for persons with disabilities in Ontario. It is a moving and tragic account.

[Calley · Rating 4 out of 5]

Absolutely heartbreak but a very important read for everyone.

[Cynthia · Rating 4 out of 5]

Fascinating read. Very well researched. Definitely a part of history we need to understand.

[Emily Kessler · Rating 4 out of 5]

This book was an incredible read! Catherine McKercher put her heart and soul into telling the story of her brother, Bill, and the world is a better place for the things she shares. The amount of research this endeavor took must have been enormous. As a parent to a child with Down syndrome, I am grateful for the broader conversations she invites, and wish more families would tell their stories. The only critique I have is that the 9th chapter seemed long and weighed down the story. It felt like parts of Chapter 8 and most of Chapter 9 could have been pared down to continue the flow of telling Bill's story while giving enough broader background to give the historical perspective.