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"Differently normal" and "normally different": Negotiations of female embodiment in womens accounts of atypical sex development
Linköping University, Department of Medical and Health Sciences, Division of Health and Society. Linköping University, Faculty of Arts and Sciences.
2013 (English)In: Social Science and Medicine, ISSN 0277-9536, E-ISSN 1873-5347, Vol. 98, 232-238 p.Article in journal (Refereed) Published
Abstract [en]

During recent decades numerous feminist scholars have scrutinized the two-sex model and questioned its status in Western societies and medicine. Along the same line, increased attention has been paid to individuals experiences of atypical sex development, also known as intersex or disorders of sex development (DSD). Yet research on individuals experiences of finding out about their atypical sex development in adolescence has been scarce. Against this backdrop, the present article analyses 23 in-depth interviews with women who in their teens found out about their atypical sex development. The interviews were conducted during 2009-2012 and the interviewees were all Swedish. Drawing on feminist research on female embodiment and social scientific studies on diagnosis, I examine how the women make sense of their bodies and situations. First, I aim to explore how the women construe normality as they negotiate female embodiment. Second, I aim to investigate how the divergent manners in which these negotiations are expressed can be further understood via the womens different access to a diagnosis. Through a thematic and interpretative analysis, I outline two negotiation strategies: the "differently normal" and the "normally different" strategy. In the former, the women present themselves as just slightly different from normal women. In the latter, they stress that everyone is different in some manner and thereby claim normalcy. The analysis shows that access to diagnosis corresponds to the ways in which the women present themselves as "differently normal" and "normally different", thus shedding light on the complex role of diagnosis in their negotiations of female embodiment. It also reveals that the women make use of what they do have and how alignments with and work on norms interplay as normality is construed.

Place, publisher, year, edition, pages
Elsevier , 2013. Vol. 98, 232-238 p.
Keyword [en]
Sweden; Normality; Negotiation; Diagnosis; Female embodiment; Atypical sex development; Qualitative analysis; Young women
National Category
Social Sciences
URN: urn:nbn:se:liu:diva-104132DOI: 10.1016/j.socscimed.2013.09.018ISI: 000329273600029OAI: diva2:694654
Available from: 2014-02-07 Created: 2014-02-07 Last updated: 2014-10-07
In thesis
1. Ambivalent Ambiguity?: A study of how women with 'atypical' sex development make sense of female embodiment
Open this publication in new window or tab >>Ambivalent Ambiguity?: A study of how women with 'atypical' sex development make sense of female embodiment
2014 (English)Doctoral thesis, comprehensive summary (Other academic)
Alternative title[sv]
Ambivalent tvetydighet? : En studie av hur kvinnor med ”otypisk” könsutveckling skapar mening kring kvinnlig kroppslighet
Abstract [en]

Against a backdrop of feminist and social scientific research on sex, female embodiment, and normality this thesis aims to discern how young women, who in adolescence have learned that their bodies are developing in ways considered ‘atypical’ for the female sex, make sense of their bodies and their situation. In focus are the ways in which the women make sense of and negotiate female embodiment; how they, particularly in stories about their interactions with others, position their embodied selves; and how norms and beliefs about sexed embodiment, heterosexual practice, and in/fertility are strengthened and challenged in the interviewees’ sense-making. The data comprise 23 in-depth interviews with women who in adolescence have learned that they do not have a uterus and a vagina, or who have learned that they do not have two X chromosomes and have no, or non-functioning, ovaries. Through narrative and thematic analysis the thesis shows how the women’s sense-making can be obstructed by norms about female embodiment, heterosexual practice, and in/fertility, expressed through medical terminology and practice and in interaction with family, friends, and peers, as described by the interviewees. Concomitantly, as the thesis demonstrates, medical terminology can be experienced and function as a resource in the women’s sense-making. Diagnostic categories enable them to put the specificities of sex development into words and raise awareness about bodily variation. Furthermore, in their stories about others’ reactions to their bodies and about their experience and management of certain medical treatments, the women question norms about female embodiment, heterosexual practice, and in/fertility that were previously taken for granted. The complexity of the women’s sense-making is demonstrated through the ways in which the interviewees, on the one hand, align with norms about female embodiment, heterosexual practice, and in/fertility, and in which they, on the other hand, succeed in challenging the same. In this ‘juggling’ of reinforcement and resistance, the thesis argues, the women are found to expand rather than dismiss beliefs about female embodiment.  Thus, the thesis contributes with deepened knowledge about what it can be like to live with these specific conditions and with problematizations of how norms about female embodiment can be enacted and questioned.

Abstract [sv]

Mot bakgrund av feministisk och samhällsvetenskaplig forskning kring kön, kvinnlig kroppslighet och normalitet syftar avhandlingen till att undersöka hur unga kvinnor, som i tonåren fått reda på att deras kropp utvecklas på ett sätt som anses ”otypiskt” för det kvinnliga könet söker förstå och skapa mening kring sin kropp och situation. Framförallt undersöks dessa kvinnors meningsskapande, hur de i sina berättelser positionerar sig i relation till andra, och hur normer och föreställningar om kvinnlig kroppslighet, heterosexuell praktik och in/fertilitet förstås, förhandlas, stärks och ifrågasätts i berättelserna. Materialet som undersöks utgörs av 23 djupintervjuer med kvinnor som i tonåren fått reda på att de antingen inte har någon livmoder och vagina eller att de inte har två X kromosomer och inga eller  icke-fungerade äggstockar. Genom narrativa och tematiska analyser visar avhandlingen hur kvinnornas meningskapande formas av normer kring kvinnlig kroppslighet, heterosexuell praktik och in/fertilitet, då de uttrycks i kvinnornas berättelser om sin situation i möten med andra och i relation till medicinsk praktik. Samtidigt, visar avhandlingen, kan medicinsk terminologi, specifikt diagnoser, och praktik utgöra resurser i kvinnornas meningsskapande som möjliggör för dem att sätta ord på och sprida kunskap om kroppslig variation. I kvinnornas berättelser om andras reaktioner på deras kroppar och om deras erfarenhet och hantering av specifika medicinska behandlingar utmanas vidare normer som kvinnorna tidigare har tagit för givet. Genom analysen framträder således komplexiteten i kvinnornas meningskapande då de å ena sidan anammar förgivettagna normer om kvinnlig kroppslighet, heterosexuell praktik och infertilitet och å andra sidan utmanar de samma. I detta ”jonglerande” av anpassning till normer och motstånd mot desammasyns kvinnorna expandera snarare än avfärda föreställningar om kvinnlig kroppslighet. Avhandlingen fördjupar därmed kunskapen om hur det kan vara att leva med dess specifika tillstånd och till att problematisera hur normer om kvinnlig kroppslighet kan ta sig uttryck och ifrågasättas.

Place, publisher, year, edition, pages
Linköping: Linköping University Electronic Press, 2014. 77 + 2 Appendicies p.
Linköping Studies in Arts and Science, ISSN 0282-9800 ; 633Linköping Dissertations on Health and Society, ISSN 1651-1646 ; 25
Sex, sex development, ‘atypical’ sex development, female embodiment, adolescence, women, Sweden, uterine and vaginal agenesis, Turner syndrome, intersex, DSD, qualitative methodologies, sense-making, narratives, norms, normality, heteronormativity, resistance, relations, sexual practice, diagnosis, treatment, critique, Kön, könsutveckling, kvinnlig kroppslighet, ”otypisk” könsutveckling, normalitet, tonår, kvinnor, Sverige, MRKH syndrom, uterus och vaginal agenesi, Turner syndrom, intersex, DSD, meningskapande, relationer, kvalitativ metod, narrativ, normalitet, heteronormativitet, sexuell praktik, normer, ifrågasättande, diagnos, behandling, kritik
National Category
Social Sciences Interdisciplinary Gender Studies
urn:nbn:se:liu:diva-111100 (URN)10.3384/diss.diva-1111100 (DOI)978-91-7519-215-4 (print) (ISBN)
Public defence
2014-10-31, TEMCAS, Hus T, Campus Valla, Linköpings universitet, Linköping, 10:15 (English)
Available from: 2014-10-07 Created: 2014-10-07 Last updated: 2016-05-04Bibliographically approved

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