Normalizing Medicine: Between “Intersexuals” and Individuals with “Disorders of Sex Development”

Feder, Ellen K.

doi:10.1007/s10728-009-0111-6

Cited by 15 publications

(11 citation statements)

References 15 publications

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“…In 7 of 10 focus groups, participants started discussion by reacting very negatively against the word disorders in 'DSD' because it was considered medical, pejorative and/or pathologising: 'DSD' does not seem to function as a term that lay people necessarily find good or normalising, as suggested by e.g. Feder (2009b). Rather (in line with critique raised by e.g.…”

Section: Qualitative Analysismentioning

confidence: 99%

“…This label is in line with classificatory systems, such as the ICD-10, where symptoms, underlying processes, and reasons for seeking healthcare are understood in relation to diagnostic criteria (World Health Organization, 2015). Feder (2009b) has argued that 'DSD' might shift the perception of these conditions from being 'disorder [s] like no other' to being 'disorder [s] like many others' (p. 134), by refocusing from identity and genitals to genetic and endocrinological functioning.…”

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confidence: 99%

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Making sense of ‘Intersex’ and ‘DSD’: how laypeople understand and use terminology

Lundberg

Hegarty

Roen

2018

Psychology & Sexuality

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Various umbrella terms refer to sex characteristics that do not fit typical binary notions of somatic sex. Key terms include Intersex, reclaimed by 1990s activists, and Disorders of Sex Development (DSD) used in medicine since 2006. Professionals across diverse disciplines express strong preferences for specific terms, making assumptions about what those terms do. Here, we draw on 10 focus group-interviews (41 participants without particular knowledge of Intersex/DSD), and semi-structured face-to-face interviews with 33 parents and 22 young people with personal experience of Intersex/DSD to examine how diverse laypeople understand and use these two umbrella terms and their alternatives. Most participants agreed that 'DSD' was problematic. Most young people and parents used 'descriptive explanations' of how the body looked or worked. Many parents and young people also found 'Intersex' problematic, whilst a majority of focus group participants did not. We conclude that as 'experts by experience', young people and their parents use language pragmatically and flexibly in everyday life to a degree that people unfamiliar with their experiences can easily underestimate. We further conclude that prescriptive discussions on terminology in this area may be needlessly constraining for people with such personal experience.

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Section: Qualitative Analysismentioning

confidence: 99%

mentioning

confidence: 99%

Making sense of ‘Intersex’ and ‘DSD’: how laypeople understand and use terminology

Lundberg

Hegarty

Roen

2018

Psychology & Sexuality

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“…They advocated treating intersex bodies not as “diseased, only different,” (Chase, 1998, p. 195), emphasizing how rarely intersex actually constitutes a medical emergency (Kessler, 1998; Preves, 2002). The diagnosis of intersex, in their opinion, was the product of “regulatory mechanisms of normalization,” (Clune-Taylor, 2010, p. 161) and they called for the halting of medical interventions that sought the erasure of anatomical variation (Feder, 2009b; Holmes, 2009; Machado, 2009). These views represented considerable consensus within the intersex activist community in the 1990s (Dreger and Herndon, 2009, p. 205), which allowed the demedicalization movement to flourish.…”

Section: The Case Of Intersexmentioning

confidence: 99%

“…Others have alluded to the power of diagnosis for unlocking access to resources, noting that to receive healthcare, intersex has to be framed using a “pathologizing term” (Feder, 2009a, p. 239). Supporters also argue that the new nomenclature normalizes intersex conditions by referring to them as a disorder “just like any other” rather than being all-encompassing of individuals’ identity like intersex (Dreger and Herndon, 2009; Feder, 2009a, 2009b). …”

Section: The Case Of Intersexmentioning

confidence: 99%

Negotiating intersex: A case for revising the theory of social diagnosis

Jenkins

Short

2017

Social Science & Medicine

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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.

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“…In other words, they see intersex as referring to something 'one essentially was' (Karkazis andFeder, 2008: 2016) and find this to be an oversimplification of their life. They worry that an unintended consequence of this is that the medical needs of those with intersex conditions can be obscured (Feder, 2009). The reasoning is that if intersex is an identity then the role of medicine is minimized, which may be a problem for those who need or desire medical intervention.…”

Section: Overcoming Imprecision and Positively Normalizing: In Defensmentioning

confidence: 99%

Against the quiet revolution: The rhetorical construction of intersex individuals as disordered

Topp

2013

Sexualities

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There has been a widespread change in nomenclature surrounding intersex since a consortium of doctors issued a consensus document that stated the term intersex was imprecise and outdated. Suggesting Disorders of Sex Development (DSD) as the alternative, the document has been widely adopted by doctors internationally. Although some have celebrated the reform as a quiet revolution, the decision to label intersex individuals as disordered dangerously pathologizes them, labeling them as defective and in need of correction. This article analyzes the effects of the new nomenclature on intersex identities and offers Differences of Sex Development as a corrective.

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Normalizing Medicine: Between “Intersexuals” and Individuals with “Disorders of Sex Development”

Cited by 15 publications

References 15 publications

Making sense of ‘Intersex’ and ‘DSD’: how laypeople understand and use terminology

Making sense of ‘Intersex’ and ‘DSD’: how laypeople understand and use terminology

Negotiating intersex: A case for revising the theory of social diagnosis

Against the quiet revolution: The rhetorical construction of intersex individuals as disordered

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