‘In your own head everyone is staring’: the disability related identity experiences of young people with hemiplegic cerebral palsy

Abstract

ABSTRACT This article explores the disability related identity experiences of young people with hemiplegic cerebral palsy. Using a narrative inquiry methodology, 25 young people between 18 and 29 years participated in in-depth interviews. Their narratives highlighted growing perceptions of difference and how the negative actions and attitudes of a few people in their past continued to shadow their current lives. Influenced by perceived negative attitudes of others to disability and their own internalisation of these, the young people conceptualise a binary of normalcy and difference, finding themselves liminally positioned, somewhere in between, and mostly seeking to avoid a disability association. In new social situations, the young people reported engaging in disability identity management work, while often resisting having disability as part of their identity. These can be conceptualised as acts of resilience and of resistance in the face of oppressive social forces. There is a powerful counter narrative in a sub group of the participants who were actively engaged with peers with experience of disability. For these young people, the inclusion of disability within social identities became possible. The findings of this study have implications for our understandings of managing identities in young lives, particularly for those in marginal positions.