Hope

Valuing lives and persons with degenerative conditions — Duchenne muscular dystrophy

Bibliographic Data

ID11147012
AuthorsKatriona Longmuir (University of Auckland, corresponding author), Julie Park (0000-0003-2763-5690, University of Auckland), R Fitzgerald (0000-0002-6042-8581, University of Otago), Michael Legge (0000-0002-1446-4338, University of Otago), C Shore (0000-0003-3117-9843, Goldsmiths University of London)
Year2024
Volume20
Issue1
Pages1-26
Publication date2024-04-23
Open AccessNo
TypeARTICLE
VenueSites a journal of social anthropology and cultural studies (JOURNAL)
Journal identifiersISSN: 0112-5990 • E-ISSN: 1179-0237
PublisherUniversity of Otago Library (PUBLISHER)
DOI10.11157/sites-id526
OpenAlexW4396655497
LanguageEN
References cited18

Duchenne muscular dystrophy (DMD) is a life-shortening genetic condition involving progressive muscular wasting for which there is no hope of recovery at present. The lives of people with DMD, cherished by their families, are systematically marginalised and undervalued by healthcare bureaucracies while enrolment in clinical trials of new treatments offers possibilities of longer-term biomedical solutions. How is hope preserved under such circumstances and what activities can promote a full and meaningful life for those with DMD Ethnographic research within the DMD community in Aotearoa New Zealand provided a basis for addressing these questions and for understanding different concepts of hope and social suffering, the value of life in DMD and disability studies, and how these are shaped by regimes of governmentality

Aotearoa · Bureaucracy · Ethnography · Governmentality · Political science · Politics · Sociology · Value (mathematics · Wasting · Anthropology · Biomedical Ethics and Regulation · Gender Studies · Law · Medicine

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