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Paper short abstract

Drawing on research with young people (19-33) who live with an ostomy, this paper challenges normative understandings of disability, youth, and the life-course. It does so through the conceptual lens of chronicity - the negotiations with, and embracement of, the enduring state of chronic illness.

Paper long abstract

This paper challenges normative understandings of youth, disability, and the life-course through the conceptual lens of chronicity – the negotiations with, and embracement of, the enduring state of chronic illness; drawing on empirical data from flexible qualitative research with fourteen young people aged 19-33 in the UK, who live with or previously lived with, an ileostomy or colostomy. Ileostomy and colostomy surgery exteriorises a portion of the intestine to divert poo outside the body; the bowel on the exterior is referred to as an ostomy or stoma. This paper contributes to social science debates about normative time through the utilisation of crip theory. I frame my argument around participants’ negotiations with permanent stoma surgery as these findings reveal the pervasiveness of ‘normal’ and how the desire and pressure to experience normative youthhood significantly shapes disabled people’s lives and bodies. Furthermore, findings related to chronicity highlight how some young disabled people actively resist ‘normal’ and challenge assumptions about what they ‘should’ do, be, and look like, in relation to able-bodiedness, linear life-courses, and youthhood. From discussions in this paper, I recommend social scientists interested in youth and disability consider crip theory as a generative lens to understand people’s everyday and embodied lives in relational, imaginative, and inclusive ways.

Key words: Normativity, chronicity, disability, youth, lifecourse, crip time