Shut Away: When Down Syndrome Was a Life Sentence

162 Pages·2019·2.687 MB·English

by  Catherine McKercher

“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 his story.”
— Carolyn Abraham, author of The Juggler's Children: A Journey into Family, Legend and the
Genes that Bind Us
“McKercher’s meticulous research and precise, understated prose creates an unforgettable history of
children placed in overcrowded, understaffed, and sometimes violent living conditions. Shut Away is
a searingly honest portrait of a family ruptured by the decision to send away a very young boy and a
moving portrait of a brother.
— Judy McFarlane, author of Writing with Grace: A Journey Beyond Down Syndrome
“McKercher’s compelling and moving memoir illuminates the harsh realities of life in a long-stay
residential facility, as well as the familial impact of the fateful decision to send her brother away.”
— David Wright, author of Downs: The History of a Disability

Copyright © 2019 by Catherine McKercher.
All rights reserved. No part of this work may be reproduced or used in any form or by any means, electronic or mechanical, including
photocopying, recording, or any retrieval system, without the prior written permission of the publisher or a licence from the Canadian
Copyright Licensing Agency (Access Copyright). To contact Access Copyright, visit www.accesscopyright.ca or call 1-800-893-5777.
Edited by Jill Ainsley.
Cover and page design by Julie Scriver.
Cover image: “Bill in the park at Smiths Falls,” courtesy Catherine McKercher.
All photographs courtesy Catherine McKercher unless otherwise indicated.
Printed in Canada.
10 9 8 7 6 5 4 3 2 1
Library and Archives Canada Cataloguing in Publication
Title: Shut away : when Down syndrome was a life sentence / Catherine McKercher.
Names: McKercher, Catherine, 1952- author.
Description: Includes bibliographical references.
Identifiers: Canadiana (print) 20190090669 | Canadiana (ebook) 20190090782 | ISBN 9781773100982 (softcover) | ISBN 9781773101002
(EPUB) | ISBN 9781773100999 (Kindle)
Subjects: LCSH: McKercher, Catherine, 1952-—Family. | LCSH: Down syndrome—Patients— Family relationships. | LCSH: Intellectual
disability facilities patients—Abuse of—Canada. | LCSH: People with mental disabilities—Abuse of—Canada. | LCSH: People with
mental disabilities—Care—Canada. | LCSH: Intellectual disability facilities—Canada. | LCSH: Mental health facilities—Canada.
Classification: LCC HV3008.C2 M35 2019 | DDC 362.20971—dc23
Goose Lane Editions acknowledges the generous financial support of the Government of Canada, the Canada Council for the Arts, and
the Province of New Brunswick.
Goose Lane Editions
500 Beaverbrook Court, Suite 330
Fredericton, New Brunswick
CANADA E3B 5X4
www.gooselane.com
For Bill
A rare snapshot of all four McKercher children at home in Ottawa. This was probably the last photo of Bill taken before his move
to the Ontario Hospital School in February of 1959.
Contents
Introduction
“The best thing we could have done for him”
Chapter 1
“The great Mongolian family”
Chapter 2
“A darling, easy baby”
Chapter 3
“Hospitals for mental defectives”
Chapter 4
“Progress and happiness”
Chapter 5
“Little, well nourished Mongolian”
Chapter 6
“Very institutionalized”
Chapter 7
“A century of failure and inhumanity”
Chapter 8
“Only when he becomes more advanced”
Chapter 9
“Inclusion, independence and choice”
Chapter 10
“Red flagged”
Chapter 11
“An air of violence and punishment”
Chapter 12
“We never seem to find time to talk about Bill”
Acknowledgements
Notes
Introduction
“THE BEST THING WE COULD HAVE DONE FOR HIM”
“How many brothers and sisters do you have?”
It was one of the first questions kids asked each other back in the 1950s and 1960s, when big
families were common. I never knew how to answer it. Sometimes I told the truth and said our family
had four kids, but the usual follow-up question — “What grades are they in?” — always tripped me
up. My youngest brother wasn’t in school, or at least not in a school like the ones we went to. He
lived in something called a hospital school, an hour’s drive away. It didn’t actually have grades, and
he wasn’t actually sick; he was there because he was born with something wrong with his brain.
Having to explain all this to a kid I’d just met was difficult, so I often said, “I have an older sister and
a younger brother.” I knew lying was wrong but the lie was easier than the awkward truth. And if the
stranger became a friend, I could correct the lie later.
As the years passed, it felt less and less like a lie.
My brother Bill was born with Down syndrome. My parents took him to the Ontario Hospital
School at Smiths Falls when he was two and a half, and left him there for the rest of his life. We
visited him faithfully as a family every month when we were children. After we grew up, Mom
continued the visits, mostly on her own or with Dad. But in our house Bill was an absence, not a
presence. He had no clothes in the closet, no toys in the toy chest, no books on the bookshelves.
Framed portrait photos of the rest of us as babies hung on the wall of our parents’ bedroom. There
were none of him — just a snapshot, in profile, framed on Mom’s bureau. Our art projects and sports
gear and noisy friends filled the house. We saw nothing of his. Yes, he was my brother, but his day-to-
day life was utterly separate from mine.
The rupture in my family always troubled me, especially after I had children of my own. As a
parent, the idea of sending my toddler to an institution was horrifying. Unimaginable, in fact. Yet my
parents, who were kind and loving people, somehow found it justifiable, even reasonable, to exile
their youngest child because he had Down syndrome. And they were not alone; thousands of other
parents of children with intellectual disabilities had made the same decision. The phrase my parents
used to explain it — “Sending Bill to Smiths Falls was the best thing we could have done for him” —
became a family mantra of sorts, intoned whenever talk turned to Bill. I heard it countless times
growing up, and I sometimes said it myself. No one wanted to believe my parents’ well-intentioned
decision might have been the wrong one, or that there were other, better, ways for Bill to live. When
my own children began to echo it back to me, however, it stopped me cold. By the time they met their
uncle Bill, around 1990, the idea of shutting a child away simply because he had Down syndrome
sounded like something from the Dark Ages. It was the stuff of nightmares.
I made my living with words, first as a journalist and later as a journalism professor and scholar,
and I thought often about writing about Bill over the years. But I rarely talked about it, in large part
because I didn’t know what I would say. When I retired four or five years ago, many friends and
colleagues asked me what I going to do with my time. My stock answer was that, after working for
forty years, my plan was “to be,” not “to do.” That was good for a laugh, and it deflected the question
nicely. Over coffee one day with a colleague from another university, though, I surprised myself by