Abstract: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… Show more
“…Some participants considered amenorrhoea and not having to use pills to prevent unwanted pregnancy in a positive sense, describing it as nice and unique to be out of the burden of menstruation (Guntram, ):“You know, I in some way I kind of feel it's pretty nice not having a period… I think it's kind of a relief, in that sense. Eee not having all that and not having to be on the pill and that yeah that's really nice!…”
Disorders of sex development affect the quality of life of people living with these disorders. Nurses are tasked with providing holistic care for people with disorders of sex development in order to improve their quality of lives. As such, there is a need to explore the experiences of nurses in the management of disorders of sex development.
“…Some participants considered amenorrhoea and not having to use pills to prevent unwanted pregnancy in a positive sense, describing it as nice and unique to be out of the burden of menstruation (Guntram, ):“You know, I in some way I kind of feel it's pretty nice not having a period… I think it's kind of a relief, in that sense. Eee not having all that and not having to be on the pill and that yeah that's really nice!…”
Disorders of sex development affect the quality of life of people living with these disorders. Nurses are tasked with providing holistic care for people with disorders of sex development in order to improve their quality of lives. As such, there is a need to explore the experiences of nurses in the management of disorders of sex development.
“…FG10) that most people are different in one way or another, suggesting it is "normal to be different" (also evident in e.g., Guntram, 2013). These findings highlight that whilst medical guidelines suggest that surgery is justified when specific criteria are met, what is understood as difference, and whether difference implies a problem, is socially constructed and negotiable (a concern also expressed by e.g., Kessler, 1998).…”
When sex characteristics develop in ways that do not conform to binary models, dilemmas arise regarding how to understand the situation and what terminology to use to describe it. While current medical nomenclature suggests that it should be understood as a disorder of sex development (DSD) prompting medical responses, many describe intersex as a human variation in sexed embodiment that should be protected under discrimination laws. These opposing perspectives suggest different principles to employ in responding to dilemmas about gender assignment, early genital surgery and full disclosure of medical information. In this discursive psychological study, we explore how lay people, without prior knowledge or experience of intersex/DSD, make sense of these dilemmas and the underpinning discourses giving rise to how they talk about these situations. By using the discursive framework of ideological dilemmas, we analyse how people make sense of sex and gender (as binary or non-binary), how they deal with difference (as problematic or not), and how they understand who is in a position to make decisions in such situations. We conclude that engaging with dilemmas in-depth is more constructive than favouring one principle over others in moving social science research, reflexive clinical practice, and wider political debates on intersex/DSD forward.
“…Others prefer early surgery and do not regret the intervention (Fagerholm et al, 2011). One study found that intersex individuals constructed narratives that normalized their difference by either minimizing it or emphasizing variation among others, and situating their own difference as part of a constellation of sex variation (Guntram, 2013). In this way, they reinforce, resist, and reshape the two-sex imperative, thereby also contributing to the debate surrounding the (de)medicalization of intersex.…”
The theory of social diagnosis recognizes two principles: 1) extra-medical social structures frame diagnosis; and 2) myriad social actors, in addition to clinicians, contribute to diagnostic labels and processes. The relationship between social diagnosis and (de)medicalization remains undertheorized, however, because social diagnosis does not account for how social actors can also resist the pathologization of symptoms and conditions—sometimes at the same time as they clamor for medical recognition—thereby shaping societal definitions of disease in different, but no less important, ways. In this article, we expand the social diagnosis framework by adding a third principle, specifically that 3) social actors engage with social structures to both contribute to, and resist, the framing of a condition as pathological (i.e. medicalization and demedicalization). This revised social diagnosis framework allows for the systematic investigation of multi-directional, dynamic processes, formalizing the link between diagnosis and (de)medicalization. It also responds to long-standing calls for more contextualized research in (de)medicalization studies by offering a framework that explicitly accounts for the social contexts in which (de)medicalizing processes operate. To showcase the utility of this revised framework, we use it to guide our analyses of a highly negotiated diagnosis: intersex.
scite is a Brooklyn-based organization that helps researchers better discover and understand research articles through Smart Citations–citations that display the context of the citation and describe whether the article provides supporting or contrasting evidence. scite is used by students and researchers from around the world and is funded in part by the National Science Foundation and the National Institute on Drug Abuse of the National Institutes of Health.
