Hope

Valuing lives and persons with degenerative conditions — Duchenne muscular dystrophy

Authors

DOI:

https://doi.org/10.11157/sites-id526

Abstract

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.

Author Biographies

Katriona Longmuir, University of Auckland

Katriona Longmuir is an anthropologist with a PhD from the University of Auckland. She has an interest in ethics and education and is currently working in a large, multicultural secondary school. Her doctoral research was undertaken with the New Zealand muscular dystrophy community and this article is based in her ethnographic research.

Julie Park, University of Auckland

Julie Park is professor emerita in anthropology at the University of Auckland. Her recent co-authored book, Haemophilia in Aotearoa New Zealand highlights her research interests in health and society. She is currently working with colleagues on a book based on the “Troubling Choice” research. She was a supervisor of Katie’s research, a PI on the research programme of which this research is a part and co-wrote the article with Katie. ORCID 0000-0002-7755-4242.

Ruth Fitzgerald, University of Otago

Ruth Fitzgerald is professor of social anthropology at the University of Otago. Her research interests are in the fields of medical biotechnologies, disability issues, and human reproduction. She is the retiring editor of the journal Sites: A Journal of Social Anthropology and Cultural Studies and leads the medical humanities contribution to the Health Sciences first year programme at Otago University. She was a co-supervisor of Katie’s thesis, a PI on the research programme and contributed her expertise to the article.

Michael Legge, University of Otago

Michael Legge is honorary associate professor in biochemistry, University of Otago. His research interests include ovarian function, embryo development, inherited metabolic diseases, stem cell biology, and bioethics. He has been involved with national and international scientific and bioethics committees relating to health science, ethics, policy, and scientific communication. He was a PI on the research programme of which Katie’s work was a part and contributed to her thesis and the article in his area of expert knowledge.

Cris Shore, Goldsmiths College, University of London

Cris Shore is professor of anthropology at Goldsmiths University of London and former chair of social anthropology at the University of Auckland (2002–2017). His research examines issues in political and legal anthropology, particularly the study of policy, organizations, the modern state, and forms of governance. Cris co-edits Stanford University Press’s Anthropology of Policy series and is currently completing “Audit Culture, Accounting, and the New World (Dis)Order.” He was a supervisor of Katie’s thesis and contributed to that and the article especially in the policy areas.

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Published

23-04-2024

How to Cite

Longmuir, K., Park, J., Fitzgerald, R., Legge, M., & Shore, C. (2024). Hope: Valuing lives and persons with degenerative conditions — Duchenne muscular dystrophy. Sites: A Journal of Social Anthropology and Cultural Studies, 20(1), 1–26. https://doi.org/10.11157/sites-id526

Issue

Vol. 20 No. 1 (2023): General issue

Section

Articles

License

Copyright © in this published form is held by Sites: New Series, Association of Social Anthropologists of Aotearoa New Zealand, ALL RIGHTS RESERVED. Individual readers and non-profit libraries acting for them, are permitted to print or download a single copy of an article without charge for use in research or teaching. Permitted use includes providing a link to an article, or hosting a PDF article in online Learning Management Systems or E-Reserve Systems for authorised users. A single article may be used in print or online Course Packs. Interlibrary loan is permitted. New Zealand Copyright Law and Copyright Licensing New Zealand Education Licence provisions apply. This consent does not extend to other kinds of copying, such as copying for general distribution, for advertising or promotional purposes, for creating new collective works or for resale. For such uses, written permission is required. Write to the Editor: sites@otago.ac.nz