Missing persons – on the loss of a sibling to institutionalization

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Marilyn Dolmage never met her brother Robert, who died at Huronia Regional Centre at the age of 8, but she ended up working at the same institution before becoming a staunch advocate for inclusion.   Victoria Freeman was haunted all her life by her sister Martha’s removal from the family at the age of twenty months, and her own failure to bridge the rifts in their relationship that ablism had created.  Due to a lack of home supports and his exclusion from school, Vici’s brother Rob lived in three institutions over six years. His broken nose and the other abuses he suffered strengthened his mother’s resolve to bring Rob home in 1973. Since then Rob has been living in his home with his mum and Vici.

When survivors of the institutions launched class action lawsuits against the Ontario government alleging abuse and neglect, these women met together for the first time and began talking with other siblings of those who had been institutionalized. In sharing their personal and family experiences, they discovered they had all been deeply affected by the decision of their parents to institutionalize their sister or brother but carried their painful feelings for decades in isolation and silence.

In this episode, Vici, Marilyn, and Victoria discuss their experiences and how their siblings’ institutionalization affected the course of their lives. Their stories explore the fraught family dynamics that institutionalization and the ableist prejudices of society created, the ways they reacted as children, and what they have understood from these experiences as adults. Their stories – painful, loving, sometimes humorous – contribute an important dimension to our understanding of how institutionalization affected not just the person sent to the institution, but entire families.

Was Your Sibling Institutionalized for a Developmental Disability?

Connect with other brothers and sisters who share this experience.

Tuesday December 1, 7– 9pm (online via Zoom). Register here.

In 2009, the last three Ontario institutions for people labelled with developmental disabilities – the Huronia, Rideau and Southwestern Regional Centres – closed. Soon after, survivors launched class action lawsuits alleging systemic abuse and neglect. The suits were eventually settled, and survivors received some compensation for harm done to them. But the far reaching impacts of institutionalization are still being felt by survivors, their families, and our communities, and institutionalization continues in other forms and in other jurisdictions.

Through the class actions, siblings of those who were institutionalized started to connect and discover that we have much to share and learn from each other. While our sisters and brothers suffered the worst injustices and harms, our families suffered too, in numerous and often unrecognized ways. As siblings, we may not have had anyone to talk to about what was happening in our families at the time of institutionalization; we may know little about what happened to our siblings. Some of us may have not thought there was anything to talk about as our family or community saw institutionalization as the “best thing to do.” For these and other reasons, our stories may have remained untold for decades. Yet sharing our stories can be healing and can add another dimension to society’s understanding of the consequences of this flawed model of care. At the same time, we recognize there is a diversity of experience and there are positive stories to be told as well.

Bios:

Marilyn Dolmage works alongside people with disabilities to end segregation, promote effective inclusion and create new support relationships. Having been a social worker to close government institutions, she was the Litigation Guardian, supporting survivors in the class action and settlement, concerning neglect and abuse at Huronia Regional Centre, in Orillia, where her brother Robert died. Marilyn assists schools and families across Ontario to improve education for students of all abilities, learning together. She has led a series of projects for The Ontario Coalition for Inclusive Education since 1995 and is an associate with Inclusive Education Canada. Marilyn created and presented “The What, Why and How of Inclusive Education”, for The Inclusion Academy. She worked hard to ensure that her older son Matthew had a good life with disability, accessing the education, medical treatment, personalized funding, employment and community life he wanted. His sudden death in 2004 at 29 years of age has fueled her work to improve policy and strengthen families, schools and communities.

Victoria Freeman is a writer, theatre artist, and public historian. Her late sister Martha was a resident at the Rideau Regional Centre at Smiths Falls, Ontario, from 1960 to 1973. Victoria’s recent book, A World without Martha: A Memoir of Sisters, Disability, and Difference, explores her experience as a sibling of a child who was institutionalized because she had Down Syndrome. It was released by UBC Press on October 1, 2019 and was shortlisted for the 2020 Lambda literary award for Bisexual Non-Fiction. With L’Arche Toronto Sol Express, a performance ensemble whose core members have intellectual disabilities, she co-created Birds Make Me Think About Freedom, a play about the history of institutionalization for intellectual disability. The play premiered at the 2018 Toronto Fringe Festival and was also performed at the Toronto commemoration of the 10 year anniversary of the closing of the last 3 large Ontario institutions. Victoria can be reached through her website at victoriafreeman.ca.

Vici Clarke is the Litigation Guardian for the Rideau Regional Centre Class Action. She took action at the request of her brother Rob, a former resident of Rideau. Rob wanted to make sure something was done for the other boys who were on his ward at Rideau. This important work not only included a legal process but helped to draw back the curtain on institutionalization.  Vici spent over 40 years advocating and learning about the systematic devaluation of people who are labelled as having a developmental disability, the resulting typical life experiences; including being segregated and congregated. She has held professional and volunteer positions, at the local, provincial, national and international levels of the Community Living and People First movements,  and autonomous family advocacy organizations, She is the Project Coordinator for Family Alliance of Ontario’s Uncovering the People’s History Project, a project to collect stories of survivors and families who were institutionalized and develop an educational exhibit about the history of institutionalization. Vici lives with her Rob and Muriel in Kingston.

Was Your Sibling Institutionalized for a Developmental Disability?

Connect with other brothers and sisters who share this experience.

Tuesday December 1, 7– 9pm (online via Zoom). Register here.

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Genia Stephen
Genia Stephen

Sister, mother, midwife, writer, speaker and perpetually curious. Dedicated to bringing you the voices, ideas and conversations of world class mentors and thought leaders in the field of disability.