Experiential knowledge challenges ‘normality’ and individualized citizenship: towards ‘another way of being’

Abstract

This paper draws on the narratives of parents of disabled babies in order to conceptualize enabling care. The analysis emerges from the Sheffield site of an ESRC research project ‘Parents, professionals and disabled babies: identifying enabling care’, which is being undertaken by the Universities of Sheffield and Newcastle‐upon‐Tyne. In New Labour Britain individualized citizenship and self‐sufficiency are upheld as the embodiment of ‘the good life’. A culture of individualized citizenship obliges citizens to strive towards maximum independence, interpreted narrowly as self‐sufficiency, and acts to devalue the lives of some disabled children and their parents. In the area of disability this reinforces the individual model of disability and fails to properly value experiential knowledge acquired in the private sphere. This paper suggests that parents are engaging in reflection that counters hegemonic understandings by embracing alternative narratives that recognize diversity whilst questioning narrowly conceived interpretations of normality. This leads to the reconstruction of parental identities through discourses shaped by mutuality and interdependence.