'Futureless persons': shifting life expectancies and the  vicissitudes of progressive illness.
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.
Gibson
Barbara E
BE
Department of Physical Therapy, University of Toronto, 160-500 University Avenue, Toronto, Ontario, Canada. barbara.gibson@utoronto.ca
Zitzelsberger
Hilde
H
McKeever
Patricia
P
D000203:Activities of Daily Living; D000328:Adult; D006233:Persons with Disabilities / Q000523:psychology*; D006801:Humans; D008017:Life Expectancy; D008297:Male; D020388:Muscular Dystrophy, Duchenne / Q000523:psychology*; D012934:Social Isolation; D012962:Sociology, Medical; D013997:Time Factors; D055815:Young Adult