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Journal Article

Citation

Gibson BE, Mistry B, Smith B, Yoshida KK, Abbott D, Lindsay S, Hamdani Y. Health (London) 2014; 18(1): 95-114.

Affiliation

University of Toronto, Canada; Bloorview Research Institute, Holland Bloorview Kids Rehabilitation Hospital, Canada.

Copyright

(Copyright © 2014, SAGE Publishing)

DOI

10.1177/1363459313476967

PMID

23456143

Abstract

Children and youth with progressive conditions are living longer, and there is increased interest in designing programs that will assist them with "transitioning" to adulthood. Almost none of the transitions research to date, however, has attended to the experiences of disabled boys in "becoming men," nor has there been critical conceptual work problematizing notions of "normal" adulthood or theorizing the complex, diverse, and gendered experiences of transitioning. In this Canadian study, we investigated the intersectionality of gender, disability, and emerging adulthood with 15 young men with Duchenne muscular dystrophy. Participants created audio diaries and photographs that were explored in in-depth interviews. Using a Bourdieusian lens and Arthur Frank's notion of the narrative habitus, we examined how participants re/negotiated identities in everyday practices. Our analysis suggested that disability, masculinities, and generational (life stage) identities intersected through "narratives of nondifference," wherein participants worked to establish identities as typical "guys." Within limited fields of school and work, participants distanced themselves from the label of "disabled" and discussed their successes and challenges in terms of normative developmental trajectories. We suggest that the pursuit of "normal" is reproduced and reinforced in health and social programs and closes off other narratives and possibilities.


Language: en

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