Victoria Freeman's sister had Down syndrome and was institutionalized — so she wrote a book to honour her

Victoria Freeman is a writer, educator, artist and public historian based in Toronto.  Freeman was only four when her younger sister Martha was sent away to an Ontario institution for the intellectually disabled.

Martha was born with Down syndrome — and in the late 1950s and early 1960s there was little support, let alone acceptance, for raising a child at home with a disability. On the advice of the family doctor, Martha was placed in an institution. 

In her new book, A World without Martha, Freeman writes an unflinching account of her life story and examines a world that institutionalized her sister and people like her.

Freeman spoke with Shelagh Rogers about writing A World without Martha.

Memories of Martha

"My memories of Martha are often mundane things like feeding her, playing with her in her bedroom and trying to make her laugh. Then, shortly after, at the Rideau Regional Centre, or what was then called the Ontario Hospital School in Smiths Falls.

"It was a traumatizing experience to go there for a small child like myself.

"It was a huge institution —  at its height there were 2,600 people who were basically incarcerated there.  It was a place that smelled funny and that had groups of people in the hallways who frightened me because they would sort of lurch toward me and grab me. I didn't understand at the time that they were starved for affection and they were seeking attention — because the institution was so overcrowded that they didn't get any. 

While she was alive — she died in 2002 —  amazingly we never thought to ask her about her experience there.- Victoria Freeman

"I have had access to her institutional file. But while she was alive — she died in 2002 —  amazingly we never thought to ask her about her experience there. Our communication with each other was difficult. She had some speech impediments and we weren't used to her way of speaking. Anything I know about her experience at the institution is through her file or by analogy with other people. 

"From my perspective she disappeared. I'm sure my parents tried to explain it to me, but I was four years old and I didn't understand."

Not a burden

"My mother was very reticent in some ways when talking about Martha. Martha was almost a taboo subject in our family. It was difficult to talk about why she left or was taken away. My mother would talk about it in certain ways but in ways that we children were uncomfortable with because we almost felt implicated in her decision and need to justify it. Which I understand better now, but at the time it made me kind of squirmy.

Martha was almost a taboo subject in our family.- Victoria Freeman

"This is what they were advised to do. There were some parents who somehow had the courage to try to raise their kids in their homes. But my mother didn't feel that she could do that. It would have been her job — my father was off working. In those days, that was the woman's role, to be the caretaker. 

"She only perceived my sister in terms of burden. That was something that was present in all of society. There was no recognition of the joy you could feel in having a relationship with a person with an intellectual disability or the fact that you could actually have a reciprocal relationship."

Love out loud

"This book was written from the need to heal from my own trauma around Martha's institutionalization. I experienced her loss in a non-verbal way. I felt it in my body in ways I didn't recognize. It was through therapy and other healing modalities that my love for her was recognized. 

This book was written from the need to heal from my own trauma around Martha's institutionalization.- Victoria Freeman

"I needed to go through a process of finding the words. As a child, I felt silenced that I couldn't speak about my feelings about Martha and especially my love for her. It wasn't something we could talk about in our family."

Victoria Freeman's comments have been edited for length and clarity.