Reimagining Democracy in Disability Communities of Care

• In Event: Disability and Its Challenges to Democratic Inclusion

Abstract

The experience and insights of those with lived experience of disability have been marginalized in both the theory and practice of politics. Political theory has embraced an idea of “reason” as essential to politics that has tended to exclude those with disabilities, especially those with cognitive disabilities. And in practice, people with disabilities have had to fight for equal rights to education, transportation, and access to the built environment. Working toward a politics that is more inclusive of people with cognitive disabilities both in theory and in practice will require 1) reimagining what politics—and especially political reason—is and 2) reimagining where politics happens. In this paper, I consider three communities of care where people with and without disabilities live together intentionally—Geel, Belgium’s foster family care for adults with mental illness; L’Arche’s internationally federated small intentional communities for adults with intellectual disabilities; and Camphill’s international small intentional communities for adults with intellectual disabilities and neurodiversity.

Through interviews with members of these communities, I understand their shared life together as involving political reason. In these communities, people with disabilities are supported in making collaborative decisions that impact their shared lives together. Political reason in community life works through conversations and negotiations about the dinner menu, the distribution of chores, how leisure time is spent; it is practiced in forums, community meetings, and house meetings. Relationships built over time are crucial to and an outworking of the practice of political reason. Political reason is supported through assisted communications that use pictographs, sign language, easy read documents; support people also find ways to attend to non-verbal communications. Building on feminism’s mantra that the personal is political, I argue that communities—in the space between families and the state—offer a neglected context for developing supported political reason.

A political theory that foregrounds the lived experience of people with cognitive disabilities sharing community life forces us to reimagine democracy generally: An inclusive politics is not just about the built environment, it is also about reimagining how our institutions work to allow more people to participate in them. Local communities, including local government, though they have many drawbacks and problematic tendencies, have the virtue of being able to welcome many participants and the oft-neglected capacity to be flexible to accommodate their contributions. Centering the disability perspective may also change the way that we think about what it means to be human—disability theory and the ethics of care approach remind us that we are all relational individuals, who all often require different kinds of support in different aspects of our lives.

Author

• Lorraine Krall McCrary, Wabash College