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

Abstract

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.

Towards an agency-based model of intersex, variations of sex characteristics (VSC) and DSD/dsd health

“…Some healthcare practitioners work directly with VSC activists and advocates. Intersex activists have also shifted diagnostic terrain by contesting stigmatising terms and communication (Jenkins and Short 2017). The critical disability literature highlights the utility of human rights activism for developing a separate power base from the medical profession, and in forming the public expectation of remedies to breaches of human rights (Clements and Read 2008).…”

Diagnosing uncertainty, producing neonatal abstinence syndrome

“…However, this framework has less to offer in terms of considering the intimate, interpersonal contexts in which diagnosis (by multiple social actors) may play out. This issue has been addressed partly in a later paper by Jenkins and Short (), who identified the role of resistance to diagnoses as part of any consideration of social diagnosis. However, in each case, practices of diagnosis are left relatively untouched.…”

“…There is a danger when considering broad structural and cultural issues, of losing some of the significant interpersonal, inter‐corporeal and material contexts which also ‘make up’ particular diagnostic processes. This distance from intimate settings may also contribute to a relative lack of engagement with resistance to diagnostic processes (Jenkins and Short ). We propose an approach which bridges this gap: connecting the concept of social diagnosis to Mol's work on the production of the ‘body multiple’ via different forms of clinical practice (Mol ).…”

Cultural Safety Framework for LGBTQIA+ Communities

“…Th is is partially a result of a lack of understanding of the clinical implications associated with intersex status. 24,37,38 Likely, some of the clinical oppression that intersex patients experience is linked with overly curious invasive provision of care paired with conscious or unconscious othering by clinical providers. Intersex individuals may or may not identify with the LGBTQA patients depending on life experiences, identity, and/or personal preference.…”