AcknowledgementsI would like to express my deepest gratitude to the 23 interviewees who shared with me their stories about their lives. I would also like to thank the doctors, bloggers and patient organizations that helped me recruit the interviewees. KeywordsNormality, negotiation, diagnosis, sexed embodiment, atypical sex development, qualitative analysis, young women, Sweden Research highlights There is limited knowledge about facing atypical sex development as a young woman. The article explores how such women negotiate sexed embodiment. It shows how they use a "differently normal" and a "normally different" strategy. Doing so, they focus on bodily features that they do have to construe normalcy. 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 reveals 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 sexed 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.
Within the ethics and science literature surrounding uterus transplantation (UTx), emphasis is often placed on the extent to which UTx might improve upon, or offer additional benefits when compared to, existing ‘treatment options’ for women with absolute uterine factor infertility, such as adoption and gestational surrogacy. Within this literature UTx is often positioned as superior to surrogacy because it can deliver things that surrogacy cannot (such as the experience of gestation). Yet, in addition to claims that UTx is superior in the aforementioned sense it is also often assumed (either implicitly or explicitly) that UTx is less fraught with ethical difficulties and thus should be considered a less morally problematic option. This article seeks to examine this assumption. Given that much UTx research has been performed in Sweden, a country where surrogacy is effectively although not currently explicitly forbidden, we do this through an analysis of the arguments underpinning a 2016 Swedish white paper which considered amending existing policy such that altruistic surrogacy arrangements would be permitted. By applying the white paper’s arguments for a restrictive position on altruistic surrogacy to the case of UTx using living altruistic donors we find that such arguments, if they hold in the case of surrogacy, apply similarly to UTx. We thus suggest that, for reasons of consistency, a similar stance should be taken towards the moral and legal permissibility of these two practices.
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
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.
Uterus transplantation combined with in vitro fertilisation (IVF) (henceforth called UTx-IVF) as a treatment for infertility caused by an absence or malfunction of the uterus is advancing. About 50 transplantations have been conducted worldwide and at least 14 children have been born—9 of them by women taking part in a Swedish research project on UTx-IVF. The Swedish research protocol initially stated that the potential recipient must ‘have her own donor’ who is preferably related to the recipient. But what does it mean to ask someone for a uterus? What challenges does this question instigate? And what norms may it enact? In this article, I explore how 10 women—who have considered, and sometimes pursued, UTx-IVF—describe their experiences of searching for a donor. I aim to show how an analysis of such accounts can help us unpack some of the specific relational and gendered dimensions of UTx-IVF and by doing so enrich discussions of risks, benefits, care and support in UTx-IVF. Drawing on research in social sciences and medical humanities that has demonstrated how assisted reproductive technologies and organ donation can provoke social and familial conundrums, with respect to such topics as embodiment and identity, I present three patterns that describe different dimensions of the interviewees’ quest for a uterus donor. I discuss the negotiations that took place, how expectations unfolded and how entanglements were managed as the interviewees considered asking someone for a donation. Such an examination, I suggest, contributes to make care and support more attuned to the experiences and entanglements that UTx-IVF entails for those pursuing it. This will become increasingly important if (or when) UTx-IVF becomes part of general healthcare. To conclude, I problematise responsibilities and relational challenges in medical innovation, and in this way provide insights into how the ethical debate over UTx-IVF can broaden its scope.
In 2014, the first child in the world was born after live uterus transplantation and IVF (UTx-IVF). Before and after this event, ethical aspects of UTx-IVF have been discussed in the medical and bioethical debate as well as, with varying intensity, in Swedish media and political fora. This article examines what comes to be identified as important ethical problems and solutions in the media debate of UTx-IVF in Sweden, showing specifically how problems, target groups, goals, benefits, risks and stakes are delineated and positioned. It also demonstrates how specific assumptions, norms and values are expressed and used to underpin specific positions within this debate, and how certain subjects, desires and risks become shrouded or simply omitted from it. This approach-which we label the Ethics of the Societal Entrenchment-approach, inspired by Koch and Stemerding (1994)-allows us to discuss how the identification of something as the problem helps to shape what gets to be described as a solution, and how specific solutions provide frameworks within which problems can be stated and emphasised. We also offer a critical discussion of whether some of these articulations and formations should be seen as ethically troubling, and if so, why.
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