Impact Factor:1.137 | Ranking:21/36 in Social Sciences, Biomedical | 81/136 in Public, Environmental & Occupational Health | 5-Year Impact Factor:1.396Source:2012 Journal Citation Reports® (Thomson Reuters, 2013)
As the capacities of Reproductive Genetic Technologies expand, would-be parents face an increasing number of reproductive decisions regarding testing and screening for different conditions. Several studies have acknowledged the role that ‘experiential knowledge of disability’ plays in arriving at decisions around the use of these technologies; however, there is a lack of clarity within this literature as to what constitutes ‘experiential knowledge of disability’ and an over-reliance on medical diagnoses as a shorthand to describe different types of experience. Drawing on both social model of disability theory and the literature on chronic illness, this article presents an analysis of data from an in-depth qualitative interview study with 64 people with an inheritable condition in their family, Spinal Muscular Atrophy, and reports their views around reproduction and Reproductive Genetic Technologies. An experiential typology is presented which demonstrates the way in which experiences of ‘disability’, ‘embodied experiences of impairment’ or ‘embodied experiences of illness, death and bereavement’ are strategically privileged in accounts of reproductive decisions, in order to validate reproductive decisions taken, and, specifically, justify use (or non-use) of Reproductive Genetic Technologies. By highlighting the experiential categories within which participants embedded their reproductive decisions, this article draws attention to the porous and collapsible nature of diagnostic categories in the context of reproductive decision-making and genetic risk, and suggests new ways of researching ‘experiential knowledge of disability’ within these contexts which are able to account for the various contours of the embodied lived reality of life with ‘disability’. © 2013 SAGE Publications. Los Angeles, London, New Delhi, Singapore and Washington DC
Showing posts with label disability. Show all posts
Showing posts with label disability. Show all posts
Wednesday, November 13, 2013
Monday, November 11, 2013
Becoming men: Gender, disability, and transitioning to adulthood
Impact Factor:1.137 | Ranking:21/36 in Social Sciences, Biomedical | 81/136 in Public, Environmental & Occupational Health | 5-Year Impact Factor:1.396Source:2012 Journal Citation Reports® (Thomson Reuters, 2013)
Barbara E Gibson barbara.gibson{at}utoronto.ca University of Toronto, Canada; Bloorview Research Institute, Holland Bloorview Kids Rehabilitation Hospital, CanadaBhavnita Mistry University of Toronto, Canada; Bloorview Research Institute, Holland Bloorview Kids Rehabilitation Hospital, CanadaBrett Smith Loughborough University, UKKaren K Yoshida University of Toronto, CanadaDavid Abbott University of Bristol, UKSally Lindsay Bloorview Research Institute, Holland Bloorview Kids Rehabilitation Hospital, Toronto, CanadaYani Hamdani University of Toronto, CanadaChildren and youth with progressive conditions are living longer, and there is increased interest in designing programs that will assist them with “transitioning” to adulthood. Almost none of the transitions research to date, however, has attended to the experiences of disabled boys in “becoming men,” nor has there been critical conceptual work problematizing notions of “normal” adulthood or theorizing the complex, diverse, and gendered experiences of transitioning. In this Canadian study, we investigated the intersectionality of gender, disability, and emerging adulthood with 15 young men with Duchenne muscular dystrophy. Participants created audio diaries and photographs that were explored in in-depth interviews. Using a Bourdieusian lens and Arthur Frank’s notion of the narrative habitus, we examined how participants re/negotiated identities in everyday practices. Our analysis suggested that disability, masculinities, and generational (life stage) identities intersected through “narratives of nondifference,” wherein participants worked to establish identities as typical “guys.” Within limited fields of school and work, participants distanced themselves from the label of “disabled” and discussed their successes and challenges in terms of normative developmental trajectories. We suggest that the pursuit of “normal” is reproduced and reinforced in health and social programs and closes off other narratives and possibilities. © 2013 SAGE Publications. Los Angeles, London, New Delhi, Singapore and Washington DC
Barbara E Gibson barbara.gibson{at}utoronto.ca University of Toronto, Canada; Bloorview Research Institute, Holland Bloorview Kids Rehabilitation Hospital, CanadaBhavnita Mistry University of Toronto, Canada; Bloorview Research Institute, Holland Bloorview Kids Rehabilitation Hospital, CanadaBrett Smith Loughborough University, UKKaren K Yoshida University of Toronto, CanadaDavid Abbott University of Bristol, UKSally Lindsay Bloorview Research Institute, Holland Bloorview Kids Rehabilitation Hospital, Toronto, CanadaYani Hamdani University of Toronto, CanadaChildren and youth with progressive conditions are living longer, and there is increased interest in designing programs that will assist them with “transitioning” to adulthood. Almost none of the transitions research to date, however, has attended to the experiences of disabled boys in “becoming men,” nor has there been critical conceptual work problematizing notions of “normal” adulthood or theorizing the complex, diverse, and gendered experiences of transitioning. In this Canadian study, we investigated the intersectionality of gender, disability, and emerging adulthood with 15 young men with Duchenne muscular dystrophy. Participants created audio diaries and photographs that were explored in in-depth interviews. Using a Bourdieusian lens and Arthur Frank’s notion of the narrative habitus, we examined how participants re/negotiated identities in everyday practices. Our analysis suggested that disability, masculinities, and generational (life stage) identities intersected through “narratives of nondifference,” wherein participants worked to establish identities as typical “guys.” Within limited fields of school and work, participants distanced themselves from the label of “disabled” and discussed their successes and challenges in terms of normative developmental trajectories. We suggest that the pursuit of “normal” is reproduced and reinforced in health and social programs and closes off other narratives and possibilities. © 2013 SAGE Publications. Los Angeles, London, New Delhi, Singapore and Washington DC
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