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Ambivalent Ambiguity?: A study of how women with 'atypical' sex development make sense of female embodiment
Linköping University, The Tema Institute, Technology and Social Change. Linköping University, Faculty of Arts and Sciences.
2014 (English)Doctoral thesis, comprehensive summary (Other academic)Alternative title
Ambivalent tvetydighet? : En studie av hur kvinnor med ”otypisk” könsutveckling skapar mening kring kvinnlig kroppslighet (Swedish)
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.
Series
Linköping Studies in Arts and Science, ISSN 0282-9800 ; 633Linköping Dissertations on Health and Society, ISSN 1651-1646 ; 25
Keyword [en]
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
Keyword [sv]
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
Identifiers
URN: urn:nbn:se:liu:diva-111100DOI: 10.3384/diss.diva-1111100ISBN: 978-91-7519-215-4 (print)OAI: oai:DiVA.org:liu-111100DiVA: diva2:753353
Public defence
2014-10-31, TEMCAS, Hus T, Campus Valla, Linköpings universitet, Linköping, 10:15 (English)
Opponent
Supervisors
Available from: 2014-10-07 Created: 2014-10-07 Last updated: 2016-05-04Bibliographically approved
List of papers
1. Creating, maintaining and questioning (hetero)relational normality in narratives about vaginal reconstruction
Open this publication in new window or tab >>Creating, maintaining and questioning (hetero)relational normality in narratives about vaginal reconstruction
2013 (English)In: Feminist Theory, ISSN 1464-7001, E-ISSN 1741-2773, Vol. 14, no 1, 105-121 p.Article in journal (Refereed) Published
Abstract [en]

Analysing ten interviews with women diagnosed with and treated for congenital absence of the vagina, this article theorises the notion of ideal (hetero) relational normality. It explores how women in my case study negotiate, relate to and challenge this notion and examines the normative and bodily work for which it calls. The article specifically underscores the corporeal dimension of (hetero) relational normality. I argue that this notion of normality shapes the bodies of the women through medical interventions, while concurrently being reinforced through the corporeal shapings that the women undergo. These corporeal shapings consolidate enacted norms concerning heterosexuality and form understandings of female and male bodies. The analysis also reveals how these women nevertheless find ways to re-negotiate and question the notion of ideal (hetero) relational normality and its intertwinement with medical practice. The article contributes both to the critical examination of genital surgery and to feminist discussions of how to critically examine heterosexuality without rejecting it. Furthermore, it provides a deeper understanding of how medical interventions designed to create a vagina, or dilate a vagina considered too small, are made meaningful by the women affected.

Place, publisher, year, edition, pages
SAGE Publications (UK and US), 2013
Keyword
Disordered sex development; heterosexuality; narrative; normality; vaginal agenesis; vaginal reconstruction; young women
National Category
Social Sciences
Identifiers
urn:nbn:se:liu:diva-104853 (URN)10.1177/1464700112468573 (DOI)000330303900007 ()
Available from: 2014-02-28 Created: 2014-02-28 Last updated: 2017-12-05
2. ‘You have all those emotions inside that you cannot show because of what they will cause’: Disclosing the absence of one’s uterus and vagina
Open this publication in new window or tab >>‘You have all those emotions inside that you cannot show because of what they will cause’: Disclosing the absence of one’s uterus and vagina
2016 (English)In: Social Science and Medicine, ISSN 0277-9536, E-ISSN 1873-5347, Vol. 167, 63-70 p.Article in journal (Refereed) Published
Abstract [en]

This article examines young women's experiences of telling others that they have no uterus and no, or a so-called small, vagina – a condition labelled ‘congenital absence of uterus and vagina’, which falls within the larger category of ‘atypical’ sex development. Our aim is to investigate how affective dissonances such as fear and frustration are expressed in young women's narratives about letting others know about their ‘atypical’ sex development, and how these women narrate desired steps to recognition. By drawing on feminist writings on the performativity of affects or emotions, we examine what affective dissonances accomplish within three identified narratives: how affective dissonances may contribute to the women's positioning of themselves vis-à-vis other individuals and how affective dissonances can imply a strengthening and/or questioning of norms about female embodiment and heterosexuality. This allows us to tease out how routes for questioning of these norms become available through the three narratives that together form a storyline of coming out about a congenital absence of a uterus and vagina in the Swedish context. Furthermore, by demonstrating how others' responses shape the women – their understandings of their own bodies, their envisaged future disclosures and their relations – our analysis highlights the multifaceted intersubjective and in other ways relational, affective and temporal dimensions of coming out about one's 'atypical' sex development.

Place, publisher, year, edition, pages
Elsevier, 2016
Keyword
Emotions, intersex, Disorder of sex development (DSD), vagina, uterus, coming out, Sweden, Affective dissonance
National Category
Social Sciences Interdisciplinary Gender Studies
Identifiers
urn:nbn:se:liu:diva-111097 (URN)10.1016/j.socscimed.2016.08.028 (DOI)000384871300008 ()27598551 (PubMedID)
Note

At the time for thesis presentation publication was in status: Manuscript

Funding agencies: Pro Futura Scientia Fellowship; Swedish Collegium for Advanced Study; Uppsala University; Riksbankens Jubileumsfond; Department of Thematic Studies, Linkoping University

Available from: 2014-10-07 Created: 2014-10-07 Last updated: 2017-12-05Bibliographically approved
3. "Differently normal" and "normally different": Negotiations of female embodiment in women's accounts of 'atypical sex' development
Open this publication in new window or tab >>"Differently normal" and "normally different": Negotiations of female embodiment in women's accounts of 'atypical sex' development
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
Keyword
Sweden; Normality; Negotiation; Diagnosis; Female embodiment; Atypical sex development; Qualitative analysis; Young women
National Category
Social Sciences
Identifiers
urn:nbn:se:liu:diva-104132 (URN)10.1016/j.socscimed.2013.09.018 (DOI)000329273600029 ()
Available from: 2014-02-07 Created: 2014-02-07 Last updated: 2017-12-06
4. Hooked on a feeling?: Corporeal connectedness and relationality in infertility accounts
Open this publication in new window or tab >>Hooked on a feeling?: Corporeal connectedness and relationality in infertility accounts
2017 (English)In: Health, ISSN 1363-4593, E-ISSN 1461-7196, 1-18 p.Article in journal (Refereed) Epub ahead of print
Abstract [en]

Sociocultural meanings accorded to infertility, and rapid developments in assisted reproductive technologies, have long been central concerns in feminist and social scientific research. However, knowledge is scarce concerning how individuals make sense of infertility when it is disclosed in adolescence, for example as the result of an ‘atypical’ sex development, rather than as a result of failed conception. This article examines how understandings of desires, kinship and ‘solutions’ take shape and are negotiated in the accounts women give of infertility resulting from ‘atypical’ sex development. Through a thematic analysis it demonstrates how the interviewees described their desire for relationships and connectedness, which they considered to be made possible through pregnant embodiment, and details how these desires connected to a preference for medical ‘solutions’. Specifically, the article discusses how the interviewees’ accounts exemplifies how biological kinship can be ‘done’ without giving precedence to genetics. By addressing the specificities of finding out about infertility as a result of ‘atypical’ sex development, it furthermore highlights gaps in the common medical definition of infertility. These findings underscore the urgency of examining how definitions of infertility obscure certain experiences and consequently limit affected individuals’ access to support and treatment. In conclusion, it is suggested that the article contributes to a more positive discourse on infertility in feminist scholarship by teasing out the temporal dimensions of how affected individuals ‘make active use’ of assisted reproductive technologies to mitigate uncertainty and maintain hope, while at the same time renegotiating dominant norms of kinship.

Place, publisher, year, edition, pages
Sage Publications, 2017
National Category
Social Sciences Interdisciplinary Gender Studies
Identifiers
urn:nbn:se:liu:diva-111099 (URN)10.1177/1363459317693403 (DOI)
Available from: 2014-10-07 Created: 2014-10-07 Last updated: 2017-12-05Bibliographically approved

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