{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,5,1]],"date-time":"2026-05-01T19:33:24Z","timestamp":1777664004180,"version":"3.51.4"},"reference-count":53,"publisher":"SAGE Publications","issue":"5","license":[{"start":{"date-parts":[[2013,11,6]],"date-time":"2013-11-06T00:00:00Z","timestamp":1383696000000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/journals.sagepub.com\/page\/policies\/text-and-data-mining-license"}],"content-domain":{"domain":["journals.sagepub.com"],"crossmark-restriction":true},"short-container-title":["Health (London)"],"published-print":{"date-parts":[[2014,9]]},"abstract":"<jats:p>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 \u2018experiential knowledge of disability\u2019 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 \u2018experiential knowledge of disability\u2019 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 \u2018disability\u2019, \u2018embodied experiences of impairment\u2019 or \u2018embodied experiences of illness, death and bereavement\u2019 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 \u2018experiential knowledge of disability\u2019 within these contexts which are able to account for the various contours of the embodied lived reality of life with \u2018disability\u2019.<\/jats:p>","DOI":"10.1177\/1363459313507588","type":"journal-article","created":{"date-parts":[[2013,11,7]],"date-time":"2013-11-07T20:44:41Z","timestamp":1383857081000},"page":"476-492","update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":14,"title":["Experiential knowledge of disability, impairment and illness: The reproductive decisions of families genetically at risk"],"prefix":"10.1177","volume":"18","author":[{"given":"Felicity","family":"Boardman","sequence":"first","affiliation":[{"name":"Warwick Medical School, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"179","published-online":{"date-parts":[[2013,11,6]]},"reference":[{"key":"bibr1-1363459313507588","first-page":"310","volume-title":"Pragmatic Women and Body Politics","author":"Abel K","year":"1998"},{"key":"bibr2-1363459313507588","volume-title":"Exploring the Divide: Illness and Disability","author":"Barnes C","year":"1996"},{"key":"bibr3-1363459313507588","unstructured":"Boardman F (2010) The role of experiential knowledge in the reproductive decision-making of families genetically at risk: The case of spinal muscular atrophy. Unpublished PhD Thesis, Department of Sociology, University of Warwick, Coventry."},{"key":"bibr4-1363459313507588","first-page":"34","volume-title":"Disability and Mothering: Liminal Spaces of Embodied Knowledge","author":"Boardman F","year":"2011"},{"key":"bibr5-1363459313507588","doi-asserted-by":"publisher","DOI":"10.1016\/j.socscimed.2010.09.050"},{"key":"bibr6-1363459313507588","first-page":"11","volume-title":"Exploring the Divide: Illness and Disability","author":"Bury M","year":"1996"},{"key":"bibr7-1363459313507588","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2005-0789"},{"key":"bibr8-1363459313507588","doi-asserted-by":"publisher","DOI":"10.1080\/09687599925984"},{"key":"bibr9-1363459313507588","first-page":"55","volume-title":"Exploring the Divide: Illness and Disability","author":"Crow L","year":"1996"},{"key":"bibr10-1363459313507588","doi-asserted-by":"publisher","DOI":"10.1080\/16501970510030156"},{"key":"bibr11-1363459313507588","doi-asserted-by":"publisher","DOI":"10.1080\/09687590220139847"},{"key":"bibr12-1363459313507588","doi-asserted-by":"publisher","DOI":"10.1007\/s10897-005-0619-3"},{"key":"bibr13-1363459313507588","doi-asserted-by":"publisher","DOI":"10.1093\/molehr\/4.9.881"},{"key":"bibr14-1363459313507588","doi-asserted-by":"publisher","DOI":"10.1016\/0960-8966(91)90051-S"},{"key":"bibr15-1363459313507588","first-page":"325","volume-title":"Muscle Disorders in Childhood","author":"Dubowitz V","year":"1995","edition":"2"},{"key":"bibr16-1363459313507588","doi-asserted-by":"publisher","DOI":"10.1016\/j.nmd.2008.10.004"},{"key":"bibr17-1363459313507588","doi-asserted-by":"publisher","DOI":"10.1089\/gte.2007.0057"},{"key":"bibr18-1363459313507588","doi-asserted-by":"publisher","DOI":"10.1111\/j.1399-0004.1990.tb03504.x"},{"key":"bibr19-1363459313507588","doi-asserted-by":"publisher","DOI":"10.1111\/j.1369-7625.2011.00672.x"},{"key":"bibr20-1363459313507588","first-page":"17","volume-title":"Disabling Barriers, Enabling Environments","author":"French S","year":"1993"},{"key":"bibr21-1363459313507588","doi-asserted-by":"publisher","DOI":"10.1002\/ajmg.1320350411"},{"key":"bibr22-1363459313507588","doi-asserted-by":"publisher","DOI":"10.1016\/j.socscimed.2007.10.010"},{"key":"bibr23-1363459313507588","doi-asserted-by":"publisher","DOI":"10.4135\/9781849208574"},{"key":"bibr24-1363459313507588","volume-title":"The Discovery of Grounded Theory: Strategies for Qualitative Research","author":"Glaser B","year":"1967"},{"key":"bibr25-1363459313507588","doi-asserted-by":"publisher","DOI":"10.1080\/02646839308403192"},{"key":"bibr26-1363459313507588","doi-asserted-by":"crossref","DOI":"10.2979\/3270.0","volume-title":"Volatile Bodies: Toward a Corporeal Feminism","author":"Grosz E","year":"1994"},{"key":"bibr27-1363459313507588","doi-asserted-by":"publisher","DOI":"10.1080\/09687599727209"},{"key":"bibr28-1363459313507588","unstructured":"Jennifer Trust for Spinal Muscular Atrophy (JTSMA) (2012) Available at: http:\/\/www.jtsma.org.uk\/accessed 01\/05\/13"},{"key":"bibr29-1363459313507588","doi-asserted-by":"publisher","DOI":"10.1080\/09687599727335"},{"key":"bibr30-1363459313507588","doi-asserted-by":"publisher","DOI":"10.1177\/1359105302007002456"},{"key":"bibr31-1363459313507588","doi-asserted-by":"publisher","DOI":"10.1023\/A:1022830519602"},{"key":"bibr32-1363459313507588","doi-asserted-by":"publisher","DOI":"10.1097\/01376517-200808000-00009"},{"key":"bibr33-1363459313507588","doi-asserted-by":"publisher","DOI":"10.1080\/02646830020032400"},{"key":"bibr34-1363459313507588","unstructured":"Leder D (1990) The Absent Body. Chicago, IL and London: The University of Chicago Press, pp. 182\u2013194."},{"key":"bibr35-1363459313507588","first-page":"182","volume-title":"The Future of Human Reproduction","author":"Lippman A","year":"1989"},{"key":"bibr36-1363459313507588","doi-asserted-by":"publisher","DOI":"10.1017\/S0098858800007917"},{"key":"bibr37-1363459313507588","doi-asserted-by":"publisher","DOI":"10.1111\/j.1467-9566.2009.01197.x"},{"key":"bibr38-1363459313507588","doi-asserted-by":"publisher","DOI":"10.1016\/S0277-9536(99)00097-0"},{"key":"bibr39-1363459313507588","volume-title":"Pride against Prejudice: Transforming Attitudes to Disability","author":"Morris J","year":"1991"},{"key":"bibr40-1363459313507588","doi-asserted-by":"publisher","DOI":"10.1111\/1467-9566.00221"},{"key":"bibr41-1363459313507588","first-page":"29","volume-title":"Exploring the Divide: Illness and Disability","author":"Oliver M","year":"1996"},{"key":"bibr42-1363459313507588","doi-asserted-by":"publisher","DOI":"10.1080\/09687599925966"},{"key":"bibr43-1363459313507588","doi-asserted-by":"publisher","DOI":"10.1016\/S0277-9536(97)00011-7"},{"key":"bibr44-1363459313507588","doi-asserted-by":"publisher","DOI":"10.1080\/09687590220148487"},{"key":"bibr45-1363459313507588","doi-asserted-by":"publisher","DOI":"10.4324\/9780203640098"},{"key":"bibr46-1363459313507588","doi-asserted-by":"publisher","DOI":"10.1080\/0968759042000252506"},{"key":"bibr47-1363459313507588","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2214.2010.01067.x"},{"key":"bibr48-1363459313507588","doi-asserted-by":"publisher","DOI":"10.1111\/1469-7610.00098"},{"key":"bibr49-1363459313507588","doi-asserted-by":"publisher","DOI":"10.1080\/09687590220148496"},{"issue":"5","key":"bibr50-1363459313507588","first-page":"1077","volume":"50","author":"Wertz D","year":"1992","journal-title":"American Journal of Human Genetics"},{"key":"bibr51-1363459313507588","doi-asserted-by":"publisher","DOI":"10.1177\/1357034X96002002002"},{"key":"bibr52-1363459313507588","doi-asserted-by":"publisher","DOI":"10.1002\/(SICI)1098-1004(200003)15:3<228::AID-HUMU3>3.0.CO;2-9"},{"key":"bibr53-1363459313507588","doi-asserted-by":"publisher","DOI":"10.1016\/j.socscimed.2012.07.037"}],"container-title":["Health: An Interdisciplinary Journal for the Social Study of Health, Illness and Medicine"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/journals.sagepub.com\/doi\/pdf\/10.1177\/1363459313507588","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/journals.sagepub.com\/doi\/full-xml\/10.1177\/1363459313507588","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/journals.sagepub.com\/doi\/pdf\/10.1177\/1363459313507588","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,4,29]],"date-time":"2026-04-29T07:34:28Z","timestamp":1777448068000},"score":1,"resource":{"primary":{"URL":"https:\/\/journals.sagepub.com\/doi\/10.1177\/1363459313507588"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2013,11,6]]},"references-count":53,"journal-issue":{"issue":"5","published-print":{"date-parts":[[2014,9]]}},"alternative-id":["10.1177\/1363459313507588"],"URL":"https:\/\/doi.org\/10.1177\/1363459313507588","relation":{},"ISSN":["1363-4593","1461-7196"],"issn-type":[{"value":"1363-4593","type":"print"},{"value":"1461-7196","type":"electronic"}],"subject":[],"published":{"date-parts":[[2013,11,6]]}}}