Disability, Mothers, and Organization: Accidental Activists, by Melanie Panitch, looks specifically at the development of the community living movement across Canada, an organization that (broadly speaking) assists people with developmental disabilities in meeting their needs.
Panitch’s study — her dissertation — first takes us through the early years, when parents (mostly mothers) reached out to one another to form groups and then organizations in order to better the lives of their disabled children. Today these organizations are grouped under the national umbrella of the Canadian Association of Community Living (CACL). But how did these groups develop? Who made it happen?
Panitch documents the tireless work of three mothers: Jo Dickey of British Columbia, Audrey Cole of Ontario and Paulette Berthiaume of Quebec. These three women, mothers of children with developmental disabilities, crossed paths in their passion for two things: the deinstitutionalization of persons with intellectual disabilities and asserting the rights of these individuals. They each began by meeting other mothers in small groups in kitchens and living rooms — groups that eventually grew into larger organizations, which developed mandates, boards of directors, political strategies and organizational goals.
What is fascinating about Panitch’s study is not only how these women fought for their children — the personal is the political — but how they managed to continue their work despite the social constraints of their time. They became mothers in the late fifties and early sixties, when it was expected that mothers took care of the home and, well, “mothered” their children! Jo, Audrey and Paulette — and other mothers involved in demanding the closure of institutions — saw their “activist” roles very much as “mothering,” but it was not seen that way by many in society. These women had to deal with harsh and demeaning criticisms, like being labeled a “bad mother,” being judged to be failures as women, and being told that they should be home taking care of their families. Society wasn’t ready for women speaking out for what they wanted.
Human rights was another key area for which these women fought. They wrote drafts, spoke in front of parliamentary committees and were instrumental in having the rights of persons with all types of disabilities included in the Human Rights Code and in the 1981 Charter of Rights and Freedoms (initially the Charter did not specifically entrench the rights of people with disabilities; it was through CACL’s lobbying efforts that this was included).
There has been much progress in the community living movement since Jo Dickey, Audrey Cole and Paulette Berthiaume began their quest in the 1960s. As a result of Dickey’s lobbying efforts, legislation was passed in B.C. to close institutions (although the institutions still remain open). Audrey Cole worked towards re-defining “guardianship” for people with intellectual disabilities, believing that “supported decision-making” was more in line with a person’s human rights. And it was Paulette Berthiaume who instigated an inquiry into allegations of abuse in the institution where her son was living, which resulted in having it close its doors. But not everyone, not even the mothers, believed that people with intellectual disabilities belonged in communities. Some believed that they should remain “separate but equal.” Sadly, this attitude is still pervasive today, as institutions remain open and continue to receive funding. The work is not yet complete.
This article appeared in the May/June 2009 issue of Canadian Dimension (Mayworks: A special issue celebrating and debating labour).