“A medical condition is only as real as its definition”, Georgiann Davis on DSD in Sociology of Diagnosis journal
Sociologist Georgiann Davis Ph.D. recently had published her paper on DSD in Sociology of Diagnosis, Advances in Medical Sociology, Volume 12, 155–182.
The paper, “DSD is a perfectly fine term”: Reasserting Medical Authority Through a Shift in Intersex Terminology is a hugely important critique and highly recommended reading.
Even though the diagnosis carried with it a surgical medical response, the intersex diagnosis was often kept from patients whose internal and/or external genitalia didn’t match their sex chromosomes at birth. By the 1990s, the medicalized treatment of intersexuality was heavily critiqued by intersex activists upset that they had been lied to about their medical condition, surgically modified in ways that left them with diminished sexual desire, minimal ability to reach sexual pleasure, and in some cases, an increased likelihood of incontinence. Intersex activists responded by protesting outside of pediatric medical association meetings accusing doctors of pediatric “mutilation.” While their confrontational strategies were initially ignored by the medical profession, by the year 2000, the American Academy of Pediatrics (AAP) acknowledged that their historical treatment of intersexuality left their profession in a state of “social emergency”
…By the year 2000, Chase was delivering a plenary address to the Lawson Wilkins Pediatric Endocrine Society, a group she was once protesting against. This successful activist encroachment into medical turf was highly unusual for two overlapping reasons. It marked the first time an activist’s perspective was solicited by organizers of a major medical conference. And, it was “the first time that the society’s annual symposium was devoted to intersexuality”. One of the consequences of this challenge seems to be a nosological change, from intersex in the 1990s to DSD in 2006. I argue this shift was a reaction to activist challenges to medical jurisdiction over intersexuality, and doctors’ insistence on the DSD terminology was a reassertion of their medical authority.
Georgiann comes to her research as a feminist sociologist with an intersex background. Her research was based on 62 in-depth face-to-face interviews with 36 intersex people, 14 parents and 9 medical professionals between October 2008 and August 2010. Over 100 hours of interview data was collected.
Georgiann found that medical professionals held essentialist understandings of gender:
Most medical professionals I spoke with held essentialist understandings of gender that were neatly tied to stereotypical western, white, and middle class expectations of femininity and masculinity…
This was as true of women doctors as much as of men:
Talking to Dr. D., a well-respected endocrinologist, she went on to explain:
“My experience with girls with [congenital adrenal hyperplasia] suggests to me that it’s pretty hard-wired. A lot of the CAH girls are significant tomboys…”
Explanations for gendered behaviors were grounded in hormonal exposure during gestation.
Medical professionals correlate sex, gender and sexual orientation, each aligned for heterosexual, gender-normative behaviour:
Consistent with a binary logic that suggests sex, gender, and sexuality are all neatly correlated, most doctors used each interchangeably in justifying their essentialist gender views…
Medical professional’s essentialist assumption that there is a rigid correlation between sex, gender, and sexuality resonates with the nomenclature shift from intersex to the pathologizing disorder of sex development…
Medical professionals view gender as something that should function, and to function properly it must be in line with sex and sexuality… The problem with such approach is that medical professionals are in a position of authority to define and treat these social constructions how they see fit.
The powerful, authoritative position of medical professionals is clearly shown in the case of Dr C.:
Medical professionals made it clear during the interview that parents welcomed their professional opinion with little resistance or hesitation. However, such wasn’t true for all families. Dr. C. recounted a recent consultation with a family that was very critical of his recommendations:
“The father said, “[Doctor], can I ask you a question?” I said, “Absolutely, this is your forum. I’m at your disposal. You’re hiring me.” He said, “Why should we do anything?” And I acted physically surprised, I’m sure I did. And I said, “Well, I’m concerned that if you raise this child in a male gender role without a straight penis, he’s not going to see himself as most other males and he’s not going to certainly be able to function as most other males.” And the father said, “Well, in our family we like to celebrate our differences and not try to all be the same and feel the social pressure to do everything like everyone else does.”… I said, I do have to say one thing, and I think it’s of key importance that you both see a psychiatrist.”
Georgiann argues that the use of terminology like DSD is a reassertment of medical control over a biological phenomenon, concluding:
The success of early intersex activism, centered on framing intersexuality as a social rather than biological condition, was short lived. Medical professionals needed to maintain their authority in the face of intersex activism, and they did so linguistically through a reinvention of the intersex diagnosis. The new DSD terminology constructs “sex” as a scientific phenomenon, and a binary one at that. Under such frame, intersex experts neatly link intersexuality to science, and thus are able to justify surgery. This places intersexuality neatly into medical turf and safely away from critics of its medicalization. At the same time, the connection to science increases medical credibility, which in light of intersex activism, is necessary.
…With the new DSD terminology, intersexuality has been returned to medical turf where medical professionals, notably surgeons, are able to reclaim authority over the intersex body…
Georgiann Davis is Assistant Professor of Sociology at Southern Illinois University at Edwardsville and can be contacted via her website. Her paper, in Sociology of Diagnosis, Advances in Medical Sociology, Volume 12, 155–182, can be found here.