Living at the edge : narratives of young people surviving cystic fibrosis

Abstract

This study discusses the narratives of twenty-one young people living with a genetic disease called Cystic fibrosis (CF). It explores how these young people take up subject positions and subjectivities in managing their condition within the medical discourse of CF. The narrative data was analysed using a poststructuralist framework in order to understand young people's subjectivity. This thesis attempts to challenge the positivist view that uses objective measures to assess young people's attitude towards their use of medication to stay alive. It disputes a moralizing stance towards non-compliance / non-adherence and opens up a space to consider young people's attitudes in a different light. The analysis focuses on three main themes in the young people's relationship with the discourse of CF: 'normalization', 'resistance' and 'performativity'. The theme of normalization is taken to mean the ways these young people position themselves to 'pass-as-normal', in their attempts not to be totally colonized by CF. Resistance is taken to mean how these young people subvert the medicalised discourse of CF and use intelligent compliance in their relationship with their medications. The last analysis uses the concept of performativity to understand how young people take up their agency to carve out a livable existence within the discourse of CF. In their acts of agency, these young people did not subvert the medical discourse completely but used it intelligently to constitute themselves. This thesis concludes with the view that, while the medical discourse of CF is necessary and vital to the survival of these young people, this discourse need not dominate them. The study opens up alternative possibilities for engaging with these young people in ways that are not reducible to the powers of surveillance.

Date of Award	2010
Original language	English