613.260.3256 Erin@ErinScullion.com

When Catherine McKercher decided to retire from Carleton University in 2014 after teaching journalism for 27 years, she wasn’t thinking about what she was going to “do,” as everyone liked to ask. ”I was thinking of just “being” rather than “doing,” she says.

Until that is, she got her hands on her brother’s records from the Rideau Regional Centre in Smith Falls where he spent most of his life. The fact her brother lived there always nagged at her. After ploughing painfully through them, she realized she “had a book” and knew she had to write it.

At the time, one of her daughters quipped: “Mom! when most people retire, they do things like take flower arranging courses, or something fun.” That as opposed to delving into the rise and fall of eugenics and the history of how “imbeciles” and the “feeble-minded” were institutionalized in Canada from the 19th century on.

Cathy’s new book, Shut Away: When Down Syndrome Was a Life Sentence, is due out this fall, published by Goose Lane Editions. ”It was not an easy story to tell,” she says. “I could go on and on and on about it. I will be glad when it is all done.”

Following is a Question and Answer interview with Cathy about writing the book.

(Disclosure: Cathy McKercher is my husband’s first cousin and we are good friends).

So, I guess the first question is, what prompted you, or made you decide, to write this book?

I was 4 when my brother Bill was born and 6 when my parents took him to the hospital school at Smiths Falls. Their decision to shut him away in an institution was a defining feature of my family’s life, perhaps the defining feature. Especially after I had kids of my own, I could not imagine exiling a toddler from my home, but nor could I imagine what life on the inside was like for a child like Bill. In 2014 I learned that as a result of a class action lawsuit, former institution residents or their surviving relatives could apply for their personal file. I filed the paperwork that fall, and a photocopy of Bill’s file arrived a few weeks later. It was 1,200 pages long. It took weeks to get through it. But once I did, I realized I had the basis of a book.

Did you dither over it, and if so, why? Or did it just hit you?

I didn’t dither, but I thought about it long and hard. I needed to let my sister Mary and brother Bob know what I was doing and enlist their support. Same with my husband and children. In addition, I realized very early on that I knew next to nothing about the institutions – why they came about, how they worked, what they promised, where they failed, and how we finally got rid of them. As I saw it, I couldn’t understand Bill’s life unless I understood the institutional system itself. That required a lot of research.

Once you started, did you have any ongoing doubts about it? Like, did you ever consider stopping?

Not really. There were times I got discouraged – it’s a long and lonely process and anyone who says they enjoy writing a book is, frankly, delusional – but I thought I had something to say. I hoped I would find a publisher but figured if I didn’t, I’d build a web site and publish it that way. Happily, the first publisher I approached accepted the book.

What surprised you the most about writing this book?

So. Many. Things.

As part of the same class action lawsuit, the province agreed to deposit electronic versions of roughly 65,000 documents relating to the institutions in the Archives of Ontario at York University. It wasn’t easy getting to them: I had to file an access request, fill out a 5-page research agreement, go to Toronto and work on a dedicated computer in a little glassed-in room. I couldn’t print anything but could take notes. I was told the documents were searchable by keyword. They aren’t – you can only search by the title of the document, not by the content. I made three separate trips to the Archives over a couple of years and read through anything that looked worth reading.

This included hundreds and hundreds of accident and injury reports, medication error reports, contentious issue reports, serious incident reports and so on. Some of what I read was horrifying. Much of it was desultory and bureaucratic, even when describing the resident who was paralyzed and died after being put in restraints, or the staff member who burned residents with his cigarette, or the shocking number of injuries listed as cause unknown. I did not sleep well on those visits.

The material in Bill’s personal file held its own surprises. I learned, for example, that when Bill was a young adult, the institution tried to find him a group home or family home in Ottawa. My parents knew about this, but never told Mary, Bob or me. I learned that Bill had a pretty severe case of obsessive-compulsive disorder, which went unrecognized until the very end of his life. I learned that he was diagnosed as epileptic and put on a barbiturate after a single episode that may or may not have been a seizure. It took eight years to get him off the drug. I learned that Bill had chronic hepatitis B for years. It eventually killed him.

Were some parts harder to write than others? If so, which ones and why?

None of it was easy to write. I found myself wanting to turn away from the really ugly stuff, but of course I couldn’t. For example, I learned that when Bill was 5, the institution doctors authorized the use of a type of straitjacket on him “p.r.n,” which means when the staff thinks it’s necessary. I scoured the file for evidence anyone actually used it and sighed with relief when I didn’t find it. But then I had to pull myself up short: would anyone authorize this unless they planned to use it? I doubt it. And since it was pre-approved, would anyone bother noting its use in his file? Again, I doubt it.

But contemplating the probability that someone deliberately tied up my baby brother was very hard. There were many times when I simply wanted to rant, and at various points in early drafts I did. But in the end, I decided to calibrate my storytelling pretty carefully. My hope is that people who read the book will conclude, on their own, that what happened to Bill should never happen to a child, any child, ever again. If the readers feel rage, I’ve done my job.

What bothered you the most about your brother being in Smith Falls?

How much he lost. How small and narrow his life was. How much the rest of us lost by having him pulled out of our family and our lives.

How do you feel now that’s it’s finished?

I had two purposes in writing this book – the social and the personal. I hope I did a good job of conveying how well-meaning but deeply flawed policy did irreparable damage to individuals, families and society, and over a long, long time. On the personal side, this book was a small act of atonement for my own failures in Bill’s life. I let my parents make all the decisions about him. That was fine when we were children, but as an adult I could have been – I should have been – a better advocate for him. I turned out to be just another adult who failed him. He deserved better, and so did everyone else like him. I can’t rewrite the past, but I can hope that sharing his story may do some good.