Ableist Constructions of Time? Boys and Men with Duchenne Muscular Dystrophy Managing the Uncertainty of a Shorter Life
By: Thomas Abrams, David Abbott and Bhavnita Mistry
References
- Abbott, David. 2012. “Other Voices, Other Rooms: Talking to Young Men with Duchenne muscular dystrophy (DMD) about the transition to adulthood.” Children & Society 26(3): 241–250. DOI: 10.1111/j.1099-0860.2012.00437.x
- Abbott, David, Helen Prescott, Karen Forbes, James Fraser, and Anirban Majumdar. 2017. “Men with Duchenne muscular dystrophy and end of life planning.” Neuromuscular Disorders 27(1): 38–44. DOI: 10.1016/j.nmd.2016.09.022
- Abbott, David, and John Carpenter. 2014. “‘Wasting precious time’: Young men with Duchenne muscular dystrophy negotiate the transition to adulthood.” Disability & Society 29(8): 1192–1205. DOI: 10.1080/09687599.2014.916607
- Abbott, David, and John Carpenter. 2015. “‘The things that are inside of you are horrible’: Children and young men with Duchenne muscular dystrophy talk about the impact of living with a long-term condition.” Child Care in Practice 21(1): 67–77. DOI: 10.1080/13575279.2014.977226
- Abbott, David, John Carpenter, Barbara E. Gibson, John Hastie, Marcus Jepson, and Brett Smith. 2019. “Disabled men with muscular dystrophy negotiate gender.” Disability & Society 34(5): 683–703. DOI: 10.1080/09687599.2019.1584093
- Abbott, David, Marcus Jepson, and John Hastie. 2016. “Men living with long term conditions: exploring gender and improving social care.” Health and Social Care in the Community 24(4): 420–427. DOI: 10.1111/hsc.12222
- Abrams, Thomas, and Jenny Setchell. 2018. “Living with Death in Rehabilitation: A Phenomenological Account.” Human Studies 41(4): 677–695. DOI: 10.1007/s10746-018-09484-1
- Beresford, Bryony. 2004. “On the road to nowhere? Young disabled people and transition.” Child: care, health and development 30(6): 581–587. DOI: 10.1111/j.1365-2214.2004.00469.x
- Eagle, Michelle, John Bourke, Robert Bullock, Mike Gibson, Jwalant Mehta, Dave Giddings, Volker Straub, and Kate Bushby. 2007. “Managing Duchenne muscular dystrophy–the additive effect of spinal surgery and home nocturnal ventilation in improving survival.” Neuromuscular disorders 17(6): 470–475. DOI: 10.1016/j.nmd.2007.03.002
- Gibson, Barbara E. 2006. “Disability, Connectivity, and Transgressing the Autonomous Body.” Journal of Medical Humanities 27: 187–96. DOI: 10.1007/s10912-006-9017-6
- Gibson, Barbara, Bhavnita Mistry, Brett Smith, Karen Yoshida, David Abbott, Sally Lindsay, and Yani Hamdani. 2014. “Becoming Men: Gender, Disability, and Transitioning to Adulthood.” Health 18(1): 95–114. DOI: 10.1177/1363459313476967
- Gibson, Barbara E., Hilde Zitzelsberger, and Patricia McKeever. 2009. “‘Futureless persons’: shifting life expectancies and the vicissitudes of progressive illness.” Sociology of Health & Illness 31(4): 554–568. DOI: 10.1111/j.1467-9566.2008.01151.x
- Gibson, Barbara E., Nancy L. Young, Ross E. G. Upshur, and Patricia McKeever. 2007. “Men on the margin: A Bourdieusian examination of living into adulthood with muscular dystrophy.” Social Science & Medicine 65(3): 505–517. DOI: 10.1016/j.socscimed.2007.03.043
- Goodley, Dan, Rebecca Lawthom, and Katherine Runswick-Cole. 2014. “Dis/ability and austerity: beyond work and slow death.” Disability & Society 29(6): 980–984. DOI: 10.1080/09687599.2014.920125
- Hamdani, Yani, Bhavnita Mistry, and Barbara E. Gibson. 2015. “Transitioning to adulthood with a progressive condition: best practice assumptions and individual experiences of young men with Duchenne muscular dystrophy.” Disability and rehabilitation 37(13): 1144–1151. DOI: 10.3109/09638288.2014.956187
- Hastie, John. 2012. “A Life worth Living: Pushing the Limits of Duchenne.” Accessed January 16th 2019.
http://www.alifeworthlivingfilm.com . - Jones, Gill. 2002. The Youth Divide: Diverging Paths to Adulthood. York: Joseph Rowntree Foundation.
- Kafer, Alison. 2013. Feminist, Queer, Crip. Bloomington, Indiana: Indiana University Press.
- Kelly, Christine. 2018. “A Future for Disability: Perceptions of Disabled Youth and Nonprofit Organizations.” Social Theory & Health 16(1): 44–59. DOI: 10.1057/s41285-017-0042-5
- Liddiard, Kirsty, Katherine Runswick-Cole, Dan Goodley, Sally Whitney, Emma Vogelmann, and Lucy Watts. 2019. ‘“I was Excited by the Idea of a Project that Focuses on those Unasked Questions” Co-Producing Disability Research with Disabled Young People.’ Children & Society 33(2): 154–167. DOI: 10.1111/chso.12308
- Martiny, Kristian Moltke. 2015. “How to Develop a Phenomenological Model of Disability.” Medicine, Health Care, and Philosophy 18(4): 553–65. DOI: 10.1007/s11019-015-9625-x
- McLaughlin, Janice. 2017. “The medical reshaping of disabled bodies as a response to stigma and a route to normality.” Medical humanities 43(4): 244–250. DOI: 10.1136/medhum-2016-011065
- McRuer, Robert. 2018. Crip Times: Disability, Globalization, and Resistance. New York: New York University Press. DOI: 10.2307/j.ctt1pwt9nj
- Moola, F. J., and M. E. Norman. 2011. “‘Down the Rabbit Hole’: Enhancing the Transition Process for Youth with Cystic Fibrosis and Congenital Heart Disease by Re-Imagining the Future and Time.” Child: Care, Health and Development 37(6): 841–51. DOI: 10.1111/j.1365-2214.2011.01317.x
- Morris, Jenny. 2002. Young disabled people moving into adulthood. York: Joseph Rowntree Foundation.
- Prince, Michael J. 2012. “Canadian Disability Activism and Political Ideas: In and Between Neo-Liberalism and Social Liberalism.” Canadian Journal of Disability Studies 1(1): 1–34. DOI: 10.15353/cjds.v1i1.16
- Puar, Jasbir K. 2009. “Prognosis Time: Towards a Geopolitics of Affect, Debility and Capacity.” Women & Performance: A Journal of Feminist Theory 19(2): 161–72. DOI: 10.1080/07407700903034147
- Rodger, Sunil, Katherine L. Woods, Catherine L. Bladen, Angela Stringer, Julia Vry, Kathrin Gramsch, Janbernd Kirschner, Rachel Thompson, Katharine Bushby, and Hanns Lochmüller. 2015. “Adult care for Duchenne muscular dystrophy in the UK.” Journal of Neurology 262(3): 629–641. DOI: 10.1007/s00415-014-7585-3
- Ryan, Sara, and Katherine Runswick-Cole. 2008. “Repositioning mothers: Mothers, disabled children and disability studies.” Disability & Society 23(3): 199–210. DOI: 10.1080/09687590801953937
- Setchell, Jenny, Thomas Abrams, Laura C. McAdam, and Barbara E. Gibson. 2019. “Cheer* in Health Care Practice: What It Excludes and Why It Matters.” Qualitative health research. DOI: 10.1177/1049732319838235
- Skyrme, Sarah. 2017. “In and on their own terms: Children and young people’s accounts of life with Duchenne muscular dystrophy.” Child Care in Practice 23(1): 77–89. DOI: 10.1080/13575279.2016.1158152
- Stalker, Kirsten, John Carpenter, Claire Connors, and R. Phillips. 2004. “Ethical issues in social research: difficulties encountered gaining access to children in hospital for research.” Child: Care, Health and Development 30(4): 377–383. DOI: 10.1111/j.1365-2214.2004.00426.x
- Tisdall, Kay. 2001.
“Failing to Make the Transition? Theorising the ‘Transition to Adulthood’ for Young Disabled People.” In Disability and the Life Course: Global Perspectives, edited by Mark Priestley, 167–78. Cambridge: Cambridge University Press. DOI: 10.1017/CBO9780511520914.016 - Whitney, Sally. 2018. “The meaning of birthdays” Accessed at 16th January 2019.
https://livinglifetothefullest.org/2018/12/04/the-meaning-of-birthdays/ . - Yamaguchi, Miku, and Machiko Suzuki. 2015. “Becoming a back-up carer: Parenting sons with Duchenne muscular dystrophy transitioning into adulthood.” Neuromuscular disorders 25(1): 85–93. DOI: 10.1016/j.nmd.2014.09.001
DOI: https://doi.org/10.16993/sjdr.623 | Journal eISSN: 1745-3011
Language: English
Page range: 48 - 57
Submitted on: Jan 16, 2019
Accepted on: Jan 26, 2020
Published on: Mar 10, 2020
Published by: Stockholm University Press
In partnership with: Paradigm Publishing Services
Keywords:
© 2020 Thomas Abrams, David Abbott, Bhavnita Mistry, published by Stockholm University Press
This work is licensed under the Creative Commons Attribution 4.0 License.