Search

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. [ABSTRACT FROM AUTHOR]

As COVID-19 crosses the globe, disabled people are subject to new medical and discursive realities. Focusing on the consequences of the latter, we utilize news reports from Canada and the UK to argue the current language of pre-existing conditions represents disability as non-life, explaining away the material realities facing disabled persons. This language ignores the distribution of care work in our societies, poverty, and other forms of exclusion facing disabled people and the population more generally. Work on ventilator users points to these existing inequalities, obscured as they may be. This story is not new. Outlining existing narratives within disability studies challenging disability as deadly biological and economic deficiency and situating the 'pre-existing' terminology therein, we look to work in disability studies and bioethics to challenge the disability-death equation. We end reviewing counter-narratives by and for disabled people, highlighting the ongoing and life-affirming resistance throughout the disability rights movement. [ABSTRACT FROM AUTHOR]