Disabled Young People, Support and the Dialogical Work of Accomplishing Citizenship

Governments, human rights bodies and disability studies scholars all have suggested that disabled people’s citizenship – the legal status and lived practices that enable membership, participation and belonging in one’s community - depends on consistent, adequate and readily available home and personal supports. Yet, little theoretical or empirical work examines disabled young people’s citizenship or their use of support, particularly from their standpoints. Consequently, the ‘work’ disabled young people do to accomplish citizenship remains unrecognized, as are their unique requirements for support to do that work. Normative non-disabled citizenship assumptions remain unproblematized. This study explores what disabled young people do to accomplish citizenship, using home and personal support as the empirical foci. I used a dialogic theoretical and methodological approach, drawing on Mikhail Bakhtin and Dorothy Smith. Both posit that our talk, consciousness and actions respond to and anticipate the voices of others. Through participatory media arts techniques with disabled young people, ethnographic observation and interviews with gatekeepers to formal and informal care, I describe the work that a group of disabled young people did to secure and maintain support and how this in turn shaped their opportunities for specific citizenship practices: self-determination, community participation and social contribution. I argue that disabled young people's work to secure and maintain support requires that they mobilize the authoritative discourse of 'the poster child': a set of objectified values and views encapsulated in utterances about disabled people as futureless, deficient and deferential, originating in images to promote charitable giving. I trace three sequences of activities in which participants assimilated, resisted or brought poster child utterances into ‘dialogue’. The findings raise questions about the extent to which formal entitlements to supports influence how citizenship is lived. Drawing attention to the gaps and tensions in support provision, the findings illuminate the tremendous invisible, tacit work these participants do to strengthen fragile supports. This work, organized by philanthropic rather than rights discourses, leads to a qualified or fragile citizenship. Finally, the study raises questions about the normative and material demands that we may all experience with respect to achieving citizenship, regardless of disability or age.Ph