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‘Futureless persons’: shifting life expectancies and the vicissitudes of progressive illness
Author(s) -
Gibson Barbara E.,
Zitzelsberger Hilde,
McKeever Patricia
Publication year - 2009
Publication title -
sociology of health and illness
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.146
H-Index - 97
eISSN - 1467-9566
pISSN - 0141-9889
DOI - 10.1111/j.1467-9566.2008.01151.x
Subject(s) - habitus , social isolation , life course approach , life expectancy , narrative , psychology , isolation (microbiology) , futures contract , developmental psychology , sociology , gender studies , social science , psychiatry , population , linguistics , demography , philosophy , cultural capital , financial economics , microbiology and biotechnology , economics , biology
Medical technological advances can have profound effects on people's lives by extending the life course and creating uncertain futures. This is the case for a number of persons with ‘diseases of childhood’ who can now survive well into adulthood with technological support. This paper draws on a Canadian qualitative study of young men with Duchenne muscular dystrophy (DMD) which examined the effects of a shifting life expectancy on personal identities. Engaging with Pierre Bourdieu's central concept of habitus, we discuss the temporal dimensions of social exclusion and marginalised identities. Participants’ narrative accounts revealed how their dispositions were orientated to a shortened lifespan that exerted damaging effects regardless of actual lifespan. Compounding their material, social and symbolic isolation was a temporal isolation whereby the men had lived every day anticipating that it could be their last for as much as a decade. The findings suggest a need to re‐orient medical and social discourses to serve and include adults with DMD and other conditions previously limited to childhood in their communities.