Ableist constructions of time? Boys and men with Duchenne Muscular Dystrophy managing the uncertainty of a shorter life
Abrams T, Abbott D, Mistry B
Scandinavian Journal of Disability Research
Available online 10 Mar 2020
This paper draws on studies carried out in Canada (2016–2018) and the 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.
The NIHR School for Social Care Research (Phase III, 2019-2024) is a partnership between the London School of Economics and Political Science, King’s College London and the Universities of Birmingham, Bristol, Kent, Manchester and York, and is funded by the National Institute for Health Research (www.nihr.ac.uk). Phase I (2009-2014) of NIHR SSCR involved the London School of Economics and Political Science, King's College London and the Universities of Kent, Manchester and York. Phase II (2014-2019) involved the London School of Economics and Political Science and the Universities of Kent, Manchester and York.
The views expressed are those of the authors and not necessarily those of the NIHR SSCR, NIHR or Department of Health and Social Care.