Abstract
This paper draws on studies carried out in Canada (2016-2018) and UK (2009-18) which explored the experiences of boys and men with Duchenne muscular dystrophy (DMD). Life expectancy with DMD has increased significantly and generations of men lead lives that many did not expect them to be leading. This paper searches our data to see if boys and men with DMD are supported to manage the precariousness of a life shorter than the ‘norm’. Our studies had focuses on transition to adulthood, gender, social care, interactions in rehabilitation clinics, and managing conversations about death. The paper discusses how respondents framed DMD within time and the life-course. Our analysis suggests that ableist assumptions about time make the management of a challenging disease such as DMD even more challenging. We found little evidence of boys and men being helped to think through how to plan for a life expectancy that kept shifting.
Original language | English |
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Pages (from-to) | 48–57 |
Number of pages | 10 |
Journal | Scandinavian Journal of Disability Research |
Volume | 22 |
Issue number | 1 |
DOIs | |
Publication status | Published - 10 Mar 2020 |
Research Groups and Themes
- SPS Norah Fry Centre for Disability Studies
Keywords
- Duchenne muscular dystrophy
- time
- shorter lives
- ableism
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Dive into the research topics of 'Ableist constructions of time? Boys and Men with Duchenne Muscular Dystrophy Managing the Uncertainty of a Shorter Life'. Together they form a unique fingerprint.Profiles
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Professor David W F Abbott
- Bristol Poverty Institute
- School for Policy Studies - Professor of Social Policy
- Cabot Institute for the Environment
Person: Academic , Member