The Value of Life: An Ethnography of Duchenne Muscular Dystrophy in Aotearoa New Zealand

Abstract

How is life valued for people living with Duchenne muscular dystrophy (DMD) in Aotearoa New Zealand? I examine this question through a study of the community of people in New Zealand living with DMD, the Muscular Dystrophy Association, and the state systems of health and social services in which they are embedded. DMD is a serious genetic condition in which boys and young men with the affected gene experience degenerative muscle wasting. It is characterised by a predictable decline in all the muscles of the body, including the heart and the thoracic muscles. It is a life shortening condition. My detailed ethnographic analysis of situations as diverse as enthusiastic computer coding, paid caregiver support and power chair soccer has called for a range of theoretical approaches, including local biologies, assemblages, governmentality, and recent literature in the anthropology of policy and the anthropology of hope. In my analysis of people’s day to day lives, I learned that pain and suffering are unavoidable but pain and hope are intertwined. Boys and men with DMD and their families focus on living purposeful lives. The interests and passions that they have are indicative of a distinctive immediacy in which the now and the near future is paramount. These young men often have exceptionally devoted families who highly value their lives. Using the analytic of biopower, I explain how the bureaucratic entanglements of young men and their families have the effect of devaluing their lives. As Foucault proposed, biopower, exercised through New Zealand’s neoliberal state health and social systems is focussed on the needs of the majority. Because DMD is such an extreme condition, people living with it often find themselves outside the limits of state care. The ensuing frustration creates social suffering, compounding the condition itself. Consequently, I conclude that inclusive provision and effective care for people with DMD necessitates a specific national system of comprehensive, multidisciplinary care. International and local models for such provision already exist.