Disability and Resistance
Since then there has been a virtual outpouring of mothers’ first-person accounts, which provide an important genre of disability literature in Canada and beyond. For the most part, these sources, even those recently published, have tended to focus on the personal experience: the mother’s grief, the sense of loss at not having a “normal” child, coping strategies, the balancing act required to keep the family intact and the endless regime of applications for benefits and appointments.
Two new books situated within the rich tradition of mothers’ narratives have broken new ground and gone beyond the “personal” to the broader political context. Both are written by feminists: Miriam Edelson is a Canadian labour-movement activist, and Susan Schwatzenberg is an American artist who designed the Rosie the Riveter Monument in Richmond, California to memorialize women’s war-time work in the shipyards. And both share a commitment to uncovering women’s invisible work and adding mothers’ disability activism to social-movement literature. They illuminate complementary aspects of political advocacy by showing how advocating for services has brought mothers – and in some cases fathers – into a broader relationship with the state.
Schwartzenberg chronicles the lives of thirteen “senior parents” in the Seattle Family Network who raised children with developmental disabilities between 1940 and 1980. In a project funded by the City of Seattle’s Office of Arts and Cultural Affairs, Schwartzenberg embedded herself as an artist-in-residence with the Seattle families. She brought an impressive artistic repertoire and a background in social justice – though no previous exposure to disability politics. She began with conversation – around food – starting with a “potluck” dinner. She listened to how this post-war generation – the first wave of activist mothers – refused medical opinions that would have them institutionalize their children.
Using visual documents – mementos from family archives, personal photographs, and newspaper accounts – she generated a method to document the network’s forty-year history. The great success story at the heart of the book is how four “bake sale activists” became the principal authors (with extensive grassroots support) of the Education for All Handicapped Children Act, passed as a federal law in 1975. Underlying this victory was a story of how “a private experience can first isolate and then galvanize people, bringing their shared experience into public view.”
Schwartzenberg provides no evidence that they used the term “organizing,” yet it is hard to imagine that arguments about strategies and actions did not take place while they were boiling jam and baking cookies for bazaars and fundraisers. A critical argument at the time was that, between “institutional” parents (who “placed” their children and sought to upgrade the facilities) and “community” parents (who pressured for alternative services close to home), the legacy of hard feelings from that era made its way into the production of the book decades later.
The mothers we meet in Battle Cries are of a younger generation, which had children with disabilities in the 1970s and ’80s. Their stories are based on the foundation laid by activist mothers in Canada, who, like their American sisters, organized fifty years ago to refuse institutional provision and pressure for community services. The strength of Edelson’s book is its detailed revelation of the complex situations Canadian families continue to face caring for disabled children today. She finds the social and political arrangements deeply inadequate, and she raises a clarion call for advocacy – the focus of her title’s “battle cry.” It is shocking, for example, to learn that that one mother in 1973 was still being told by her doctor to “put her child away.”
Edelson, who has negotiated this terrain in personally caring for her son Jake, wondered about the experiences of other families. She interviewed eight mothers and (some) fathers across Canada to investigate whether the “advocacy many parents perform on behalf of their children with disabilities led to a greater involvement in the life of their communities.” She discovered mothers who were lobbying, pressuring and speaking on behalf of their children, no question. But unlike the imprint on social policy left by Schwartzenberg’s “senior parents,” these younger mothers offered her few clues when it came to their involvement in community action and political change. Edelson herself recognizes that while they had “learned to fight City Hall,” it was “not clear that doing so became a transformative experience in terms of their political views or civic participation.” Perhaps this is not so surprising in light of her book’s narratives, which revealed most parents were acting on their own; almost none belonged to disability organizations. They may have had good reasons; certainly the book surfaces many of the hotly contested debates permeating disability associations (inclusive vs. segregated education, individualized vs. block funding; closing vs. saving institutions). Moreover, given how busy her mothers’ lives are with the day-to-day pressures, the question arises: When would they find the time or energy to attend meetings?
Perhaps the book will in some way generate resources to bring them all together, just once, to begin to build the kind of informal and relational groups that are so fundamental to women’s politicization and social action.