A World Without Martha: Who Speaks? Who Tells? Who Listens?Posted: Wednesday, June 10, 2020
Originally published on ActiveHistory.ca
By Victoria Freeman
In 1960, my twenty-month-old sister Martha was admitted to the Rideau Regional Centre, an institution for people with developmental disabilities located on the outskirts of Smiths Falls, Ontario. For the next thirteen years she would live in this isolated and overcrowded complex of 50 buildings that at its peak housed 2,600 inmates.
I use the word ‘inmate’ deliberately to highlight the forms of incarceration and unfreedom that this form of institutionalization represented, though at the time my entire family believed it was the best available care for my sister. Only two years older than Martha, I was deeply traumatized by the stigma associated with her Down Syndrome as well as by her removal from our family and our infrequent visits to the frightening alternate reality we referred to as the “hospital-school.”
These experiences profoundly shaped my life as well as hers, including my ability to live confidently with my own difference, as a bisexual and gender-queer person. As philosopher of science Ian Hacking has said, the word “normal” was “one of the most powerful ideological tools of the twentieth century.”[i]
Attitudes to disability and difference began to shift in the mid 1960s and early 1970s. My sister was discharged from the institution to live in an Approved Boarding Home in another city, and then in the caregiver’s family home, when the Boarding Home closed. Martha would flourish in the care of this loving woman for 29 years. Meanwhile, I lived with unacknowledged survivor’s guilt. Only through therapy and new connections forged decades later with people with intellectual disabilities did I begin to understand the ways I had been haunted by the injustices experienced by my sister.
The last three institutions of this type, one of them Rideau, closed in 2009 (the first, the Hospital for Idiots and Imbeciles, later the Huronia Regional Centre, had opened in 1876).
In 2010, incredibly brave Huronia survivors Marie Slark and Pat Seth, with support from litigation guardians Marilyn and Jim Dolmage, launched a class action lawsuit against the Ontario government, alleging systemic abuse and neglect. A similar class action by Rideau Regional Centre survivor David McKillop, supported by litigation guardian Vici Clarke, followed. Out of court settlements led to very modest financial compensation for survivors and a public apology by then premier Kathleen Wynne and Ontario opposition party leaders in 2013. The class actions also led to my first contact with institutional survivors who were willing and able to speak about their experiences – in heartbreaking detail.
This personal and social history from the 1950s to the present is the subject of my book: A World Without Martha: A Memoir of Sisters, Disability, and Difference, published by Purich Books/UBC Press in 2019.
Writing about my sister, who died in 2002, was an ethical challenge. In many ways, I had barely known her and she had a limited ability to speak for herself and be heard by others, including me.
I gained access to her institutional file, which consisted mainly of medical tests, records of quarantine for various communicable diseases, and cryptic observations by summer students assigned to her ward: “She doesn’t have the trust in adults that most children seem to have…” A year of my sister’s life would be reduced to a miserly sentence or two, but the two photographs in her file said more than any entry: the first, the bewildered baby she was at her admittance; the second, after living there for ten years, all desperation and defiance. Other than that, I had family photos from our visits, scattered family memories, and my own psychic pain.
I struggled to write about this past without reinscribing the ableist attitudes that had shaped me as a child and that I will be unlearning for the rest of my life. I could draw on the increasingly available testimony of other survivors –published, videotaped, or in person[ii] — on Madeline Burghardt’s groundbreaking scholarly study[iii], and on what I had learned from residential school survivors, whose experiences bore some similarities.
Two films, the NFB’s Danny and Nicky (1969), and the Ontario government-commissioned One on Every Street (c 1960), brought back the attitudes of my childhood with gut-wrenching clarity. I also discovered the long history of parent activism, and a key article about Huronia written by Pierre Berton the year my sister went to Rideau. Peer reviewers helped me delve further into scholarly and activist literatures on the historical construction of disability and difference; studies of mother blame helped me judge my mother less and reconsider my father’s role in their joint decisions.
I also struggled with my own right to speak about the truth of my life as I experienced it. What happened to my sister affected me so deeply and intimately that I couldn’t discuss it without disclosing quite personal things about my parents, my siblings, my partner, and our family dynamics. I am the one with the pen – and questions of privacy and authorial privilege abound. My parents had dementia when I began the book, have since died, and now live on in memory through my words, as does my sister. Luckily, my siblings supported my efforts to tell the truth lovingly, and contributed their own memories and perspectives.
I now recognize that my own subject-position as a sibling of a person institutionalized for intellectual disability — and especially as a sister (for there does seem to be a gendered dimension to this) — involved a silencing over decades. I have since talked with other siblings; we experienced the collateral damage of institutionalization, our pain and loss often unrecognized in our families and in society at large. We had to be the good child, the smart child, the consolation or replacement, unable to discuss or question what had happened, for fear of also being exiled. Our siblings endured more profound injustices, but we also have stories to tell and a need for healing. We are also part of this history.
Victoria Freeman is a writer, multidisciplinary artist, educator, and public historian. She co-wrote the film By These Presents: “Purchasing” Toronto, which was accepted at the now postponed 2020 Glasgow Short Film Festival, and has co-written two plays, The Talking Treaties Spectacle, performed at Fort York at the 2017 Indigenous Arts Festival, and Birds Make Me Think About Freedom, which premiered at the 2018 Toronto Fringe Festival. A World Without Martha: A Memoir of Sisters, Disability, and Difference was published by UBC Press in 2019.
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