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

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.

Disability, Deadly Discourse, and Collectivity amid Coronavirus (COVID-19)

“…Disability studies scholars have long pointed to ' crip time,' the multiple timeframes invited through living with disability, to challenge exclusionary demands on excluded bodies (Abrams, Abbott and Mistry 2020). This means more than giving extra time on exams, merely retrofitting normal time; it means challenging visions of the future that do not include disability (Dolmage 2017;Kafer 2015).…”