Ableist Constructions of Time? Boys and Men with Duchenne Muscular Dystrophy Managing the Uncertainty of a Shorter Life

Thomas Abrams; David Abbott; Bhavnita Mistry

doi:10.16993/sjdr.623

Ableist Constructions of Time? Boys and Men with Duchenne Muscular Dystrophy Managing the Uncertainty of a Shorter Life

Scandinavian Journal of Disability Research

Volume 22 (2020): Issue 1

By: Thomas Abrams, David Abbott and Bhavnita Mistry

Open Access

|Mar 2020

Abstract

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.

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Articles in this issue

DOI: https://doi.org/10.16993/sjdr.623 | Journal eISSN: 1745-3011

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Language: English

Page range: 48 - 57

Submitted on: Jan 16, 2019

Accepted on: Jan 26, 2020

Published on: Mar 10, 2020

Published by: Stockholm University Press

In partnership with: Paradigm Publishing Services

Keywords:

Duchenne muscular dystrophy,

time,

shorter lives,

ableism

© 2020 Thomas Abrams, David Abbott, Bhavnita Mistry, published by Stockholm University Press
This work is licensed under the Creative Commons Attribution 4.0 License.

Volume 22 (2020): Issue 1