Stigma, self-esteem and reproduction: Talking with men about life with Hypohidrotic Ectodermal Dysplasia

Clarke, Angus John ORCID: https://orcid.org/0000-0002-1200-9286 2013. Stigma, self-esteem and reproduction: Talking with men about life with Hypohidrotic Ectodermal Dysplasia. Sociology 47 (5) , pp. 887-905. 10.1177/0038038513493536

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Abstract

Interviews were conducted with members of 20 families, including affected males, to explore their experiences of life with hypohidrotic ectodermal dysplasia (HED), which impacts physical appearance. Stigmatisation is an important aspect of life for affected males; choosing how to respond becomes an important aspect of identity. Strategies include consolation, complaint, the rejection of complaint, humour and retaliation. Affected males suggest parallels with racism. The difficulties of life with HED raise the question for affected men of whether to have children. This prompts reflection upon the value of their lives, which they project onto their potential descendants. While some reject reproduction as irresponsible, others are positive about their lives, are willing to have children and would regard it as wrong to terminate an affected pregnancy. These findings have implications for ‘responsible reproduction’ (an extension of the ‘sick role’ for

Item Type:	Article
Date Type:	Publication
Status:	Published
Schools:	Medicine
Subjects:	R Medicine > R Medicine (General)
Uncontrolled Keywords:	deviance ectodermal dysplasia hypohidrotic ectodermal dysplasia identity reproduction stigma stigmatisation
Publisher:	SAGE Publications
ISSN:	0038-0385
Date of Acceptance:	1 May 2013
Last Modified:	02 Nov 2022 09:41
URI:	https://orca.cardiff.ac.uk/id/eprint/96084

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