Daily life in National Disability Insurance Scheme times: Parenting a child with Down syndrome and the disability politics in everyday places

Abstract

Social inclusion for people with disability is bound up with experiences of place in everyday life. In Australia, the inclusion agenda has been recently propelled by the National Disability Insurance Scheme which promotes – and funds – the full inclusion of people with disability so that their lives are conducted in everyday settings. This article addresses what lies between the aspirational policy principles of full inclusion and the experience of family life with a young child who has Down syndrome. Through auto-ethnographic inquiry, a series of vignettes describe my own encounters in everyday places such as shops, childcare centres and public swimming pools. I focus on ‘sense of place’ which is generated through everyday practices and can shape individual identity and belonging. Using ideas from feminist poststructuralism and critical disability studies, I argue that ableist discourses on disability are produced by people in everyday places through their attitudes, actions and expectations, disrupting regular family life and imposing oppressive modes of subjectivity upon children with intellectual disability and their parent-carers. In response, parents of children with intellectual disability are challenged to undertake the political labour of everyday disability advocacy. It is important for social work to recognise that this labour can become a significant part of the contemporary parent-carer role.