Boardman, Felicity K. (2017) Experience as knowledge : disability, distillation and (reprogenetic) decision-making. Social Science & Medicine, 191 . pp. 186-193. doi:10.1016/j.socscimed.2017.09.013 ISSN 0277-9536.

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Abstract

‘Experiential knowledge’ is increasingly recognised as an important influence on reproductive decision-making. ‘Experiential knowledge of disability’ in particular is a significant resource within prenatal testing/screening contexts, enabling prospective parents to imagine and appraise future lives affected by disability. However, the concept of ‘experiential knowledge’ has been widely critiqued for its idiosyncrasy, its permanent state of flux and its inferiority to (medical) knowledge. This paper explores some of these critiques through an analysis of the nature and uses of experiential knowledge within the context of reproductive decision-making. Seventeen women with Spinal Muscular Atrophy (SMA) or with SMA in their family living in the UK took part in two in-depth interviews: one in 2007-9 and the second in 2013-4. By comparing and contrasting these women’s accounts at two time points, the stark contrast between ‘lived experiences’ of SMA and the various way(s) these experiences came to be transformed into, and presented as, ‘knowledge’ by and through reproductive decisions is demonstrated. Through so-doing, this paper highlights the contrasting- and sometimes competing- experiential frameworks for understanding SMA that emerge from this process across time and context. However, rather than presenting this as evidence of fallibility, this paper argues for a move away from the notion that ‘knowledge’ is an appropriate vessel with which to understand, capture and transfer the experiential. Rather, we need to consider how to value such insights in ways that harness their inherent strengths without leaving simultaneously leaving them vulnerable to the epistemological critiques attracted by the label of ‘knowledge’.

Item Type:	Journal Article
Subjects:	B Philosophy. Psychology. Religion > B Philosophy (General)
Divisions:	Faculty of Science, Engineering and Medicine > Medicine > Warwick Medical School > Health Sciences Faculty of Science, Engineering and Medicine > Medicine > Warwick Medical School > Health Sciences > Social Science & Systems in Health (SSSH) Faculty of Science, Engineering and Medicine > Medicine > Warwick Medical School
Library of Congress Subject Headings (LCSH):	Experience, Spinal muscular atrophy -- Patients -- Interviews, Reproduction
Journal or Publication Title:	Social Science & Medicine
Publisher:	Elsevier
ISSN:	0277-9536
Official Date:	October 2017
Dates:	Date Event October 2017 Published 8 September 2017 Available 7 September 2017 Accepted
Volume:	191
Page Range:	pp. 186-193
DOI:	10.1016/j.socscimed.2017.09.013
Status:	Peer Reviewed
Publication Status:	Published
Access rights to Published version:	Open Access (Creative Commons)
Date of first compliant deposit:	8 September 2017
Date of first compliant Open Access:	24 January 2018
Funder:	Economic and Social Research Council (Great Britain) (ESRC)
Grant number:	ES/K002090/1
Related URLs:	Publisher

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