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‘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
Linköping University, Department of Thematic Studies, Technology and Social Change. Linköping University, Faculty of Arts and Sciences.
Linköping University, Department of Thematic Studies, Technology and Social Change. Linköping University, Faculty of Arts and Sciences.
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. Vol. 167, 63-70 p.
Keyword [en]
Emotions, intersex, Disorder of sex development (DSD), vagina, uterus, coming out, Sweden, Affective dissonance
National Category
Social Sciences Interdisciplinary Gender Studies
Identifiers
URN: urn:nbn:se:liu:diva-111097DOI: 10.1016/j.socscimed.2016.08.028ISI: 000384871300008PubMedID: 27598551OAI: oai:DiVA.org:liu-111097DiVA: diva2:753325
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
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.
Series
Linköping Studies in Arts and Science, ISSN 0282-9800 ; 633Linköping Dissertations on Health and Society, ISSN 1651-1646 ; 25
Keyword
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
Identifiers
urn:nbn:se:liu:diva-111100 (URN)10.3384/diss.diva-1111100 (DOI)978-91-7519-215-4 (ISBN)
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

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The full text will be freely available from 2019-08-20 14:36
Available from 2019-08-20 14:36

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Guntram, LisaZeiler, Kristin

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