Summary: Chapter 4 of Critical Intersex
For many of us, Chapter 4 of Critical Intersex (2009) turned out to be a particularly rich source of information about intersex history. So I (Elizabeth) have decided to give a fairly detailed summary of the chapter because I think it’s important to get that info out there. I’m gonna give a little bit of commentary as I go, and then a summary of our book club discussion of the chapter.
The chapter is titled “(Un)Queering identity: the biosocial production of intersex/DSD” by Alyson K. Spurgas. It is a history of ISNA, the Intersex Society of North America, and how it went from being a force for intersex liberation to selling out the movement in favour of medicalization. (See here for summary of the other chapters we read of the book!)
Our high level reactions:
Elizabeth (@ipso-faculty): Until I read chapter 4, I didn't really realise how reactionary “DSD” was. It hadn't been clear to me how much it was a response to the beginning of an organized intersex advocacy movement in the United States.
Michelle (@scifimagpie): I could feel the fury in the writer's tone. It was a real barn burner.
Also Michelle: the fuckin' respectability politics of DSD really got under my skin, as a term! I know the importance, as a queer person, of not forcing people to ID as queer, but this was a lot.
Introducing the chapter
The introduction sets the tone by talking about how in the Victorian era there was a historical shift from intersex being a religious/juridical issue to a pathology, and how this was intensified in the 1950s with John Money’s invention of the optimal gender rearing model.
Spurgas briefly discusses how the OGR model is harmful to intersex people, and how it iatrogenically produces sexual dysfunction and gender dysphoria. “Iatrogenic” means caused by medicine; iatrogenesis is the production of disease or other side-effects as a result of medical intervention.
This sets scene for why in the early 1990s, Cheryl Chase and other intersex activists founded the Intersex Society of North America (ISNA). It had started as a support group, and morphed significantly over its lifetime. ISNA closed up shop in 2008.
Initially, ISNA was what we’d now call interliberationist. They were anti-pathologization. Their stance was that intersexuality is not itself pathological and the wellbeing of intersex people is endangered by medical intervention. They organized around the abolition of surgical intervention. They also created fora like Hermaphrodites With Attitude for the deconstruction of bodies/sexes/genders and development of an intersex identity that was inherently queer.
The early ISNA activists explicitly aligned intersexuality in solidarity with LGB and transgender organizing. There was a belief that similar to LGBT organizing, once intersex people got enough visibility and consciousness-raising, people would “come out” in greater numbers (p100).
By the end of the 90s, however, many intersex people were actively rejecting being seen as queer and as political subjects/actors. The organization had become instead aligned with surgeons and clinicians, had replaced “intersex” with “DSD” in their language.
By the time ISNA disbanded in 2008 they had leaned in hard on a so-called “pragmatic” / “harm reduction” model / “children’s rights perspective”. The view was that since infants in Western countries are “born medical subjects as it is” (p100)
Where did DSD come from?
In 2005, the term “disorders of sexual differentiation” had been recently coined in an article by Alice Dreger, Cheryl Chase, “and three other clinicians associated with the ISNA… [so as] to ‘label the condition rather than the person’” (p101). Dreger et al thought that intersex was “not medically accurate” (p101) and that the goal should be effective nomenclature to “sort patients into diagnostically meaningful groups” (p101).
Dreger et al argued that the term intersex “attracts the interest of a large number of people whose interest is based on a sexual fetish and people who suffer from delusions about their own medical histories” (Dreger et al quoted on p101)
Per Spurgas, Dreger et al had an explicit agenda of “distancing intersex activism from queer and transgressive sex/gender politics and instead in supporting Western medical productions of intersexuality” (p102). In other words: they were intermedicalists.
According to Dreger et al, an alignment with medicine is strategically important because intersex people often require medical attention, and hence need to be legible to clinicians. “For those in favor of the transition to DSD, intersex is first and foremost a disorder requiring medical treatment” (p102)
Later in 2005 there was a “Intersex Consensus Meeting” organized by a society of paediatricians and endocrinologists. Fifty “experts” were assembled from ten countries (p101)... with a grand total of two actually intersex people in attendance (Cheryl Chase and Barbara Thomas, from XY-Frauen).
At the meeting, they agreed to adopt the term DSD along with a “‘patient-centred’ and ‘evidence-based’ treatment protocol” to replace the OGR treatment model (p101)
In 2006, a consortium of American clinicians and bioethicists was formed and created clinical guidelines for treating DSDs. They defined DSD quite narrowly: if your gonads or genitals don’t match your gender, or you have a sex chromosome anomaly. So no hormonal variations like hyperandrogenism allowed.
The pro-DSD movement: it was mostly doctors
Spurgas quotes the consortium: “note that the term ‘intersex’ is avoided here because of its imprecision” (p102) - our highlight. There’s a lot of doctors hating on intersex for being a category of political organizing that gets encoded as the category is “imprecise” 👀
Spurgas gets into how the doctors dressed up their re-pathologization of intersex as “patient centred” (p103) - remember this is being led by doctors, not patients, and any intersex inclusion was tokenistic. (Elizabeth: it was amazing how much bs this was.)
As Spurgas puts it, the pro-DSD movement “represents an abandonment of the desire for a pan-intersexual/queer identity and an embrace of the complete medicalization of intersex… the intersex individual is now to be understood fundamentally as a patient” (p103)
Around the same time some paediatricians almost came close to publicly advocating against infant genital mutilation by denouoncing some infant surgeries. Spurgas notes they recommended “that intersex individuals be subjected (or self-subject) to extensive psychological/psychiatric, hormonal, steroidal and other medical” interventions for the rest of their lives (p103).
This call to instead focus on non-surgical medical interventions then got amplified by other clinicians and intermedicalist intersex advocacy organizations.
The push for non-surgical pathologization hence wound up as a sort of “compromise” path - it satisfied the intermedicalists and anti-queer intersex activists, and had the allure of collaborating with doctors to end infant surgeries. (Note: It is 2024 and infant surgeries are still a thing 😡.)
The pro-DSD camp within the intersex community
Spurgas then goes on to get into the discursive politics of DSD. There’s some definite transphobia in the push for “people with DSDs are simply men and women who happen to have congenital birth conditions” (p104). (Summarizer’s note: this language is still employed by anti-trans activists.)
The pro-DSD camp claimed that it was “a logical step in the ‘evolution in thinking’” 💩 and that it would be a more “humane” treatment model (p105) 💩
Also that “parents and doctors are not going to want to give a child a label with a politicized meaning” (p104) which really gives the game away doesn’t it? Intersex people have started raising consciousness, demanding their rights, and asserting they are not broken, so now the poor doctors can’t use the label as a diagnosis. 🤮
Spurgas quotes Emi Koyama, an intermedicalist who emphasized how “most intersex people identify as ‘perfectly ordinary, heterosexual, non-trans men and women’” (p104) along with a whole bunch of other quotes that are obviously queerphobic. Note from Elizabeth: I’m not gonna repeat it all because it’s gross. In my kindest reading of this section, it reads like gender dysphoria for being mistaken as genderqueer, but instead of that being a source of solidarity with genderqueers it is used as a form of dual closure (when a minority group goes out of its way to oppress a more marginalized group in order to try and get acceptance with the majority group).
Koyama and Dreger were explicitly anti-trans, and viewed intergender type stuff as “a ‘trans co-optation’ of intersex identity” (p105) 🤮
Most intersex people resisted “DSD” from its creation
On page 106, Spurgas shifts to talking about how a lot intersex people were resistant to the DSD shift. Organization Intersex International (OII) and Bodies Like Ours (BLO) were highly critical of the shift! 💛 BLO in particular noted that 80-90% of their website users were against the DSD term. Note from Elizabeth: indeed, every survey I’ve seen on the subject has been overwhelmingly against DSD - a 2015 IHRA survey found only 3% of intersex Australians favoured the DSD term.
Proponents of “intersex” over “DSD” testified to it being depathologizing. They called out the medicalization as such: that it serves to reinforce that “intersex people don’t exist” (David Cameron, p107), that it is damaging to be “told they have a disorder” (Esther Leidolf, p107), that there is “a purposeful conflation of treatment for ‘health reasons’ and ‘cosmetic reasons’ (Curtis Hinkle, p107), and that it’s being pushed mainly by perisex people as a reactionary, assimilationist endeavour (ibid).
Interliberationism never went away - intersex people kept pushing for 🌈 queer solidarity 🌈 and depathologization - even though ISNA, the largest intersex advocacy organization, had abandoned this position.
Spurgas describes how a lot of criticism of DSD came from non-Anglophone intersex groups, that the term is even worse in a lot of languages - it connotes “disturbed” in German and has an ambiguity with pedophilia and fetishism in French (p111).
The DSD push was basically entirely USA-based, with little international consultation (p111). Spurgas briefly addresses the imperialism inherent in the “DSD” term on pages 118/119.
Other noteworthy positions in the DSD debate
Spurgas gives a well-deserved shout out to the doctors who opposed the push to DSD, who mostly came from psychiatry and opposed it on the grounds that the pathologization would be psychologically damaging and that intersex patients “have taken comfort (and in many cases, pride) in their (pan-)intersex identity” (p108) 🌈 - Elizabeth: yay, psychiatrists doing their job!
Interestingly, both sides of the DSD issue apparently have invoked disability studies/rights for their side: Koyama claimed DSD would herald the beginning of a disability rights based era of intersex activism (p109) while anti-DSDers noted the importance in disability rights in moving away from pathologization (p109).
Those who didn’t like DSD but who saw a strategic purpose for it argued it would “preser[ve] the psychic comfort of parents”, that there is basically a necessity to coddle the parents of intersex children in order to protect the children from their parents. (p110)
Some proposed less pathologizing alternatives like “variations of sex development” and “divergence of sex development” (p110)
The DSD treatment model and the intersex treadmill
Remember all intersex groups were united that sex assignment surgery on infants needs to be abolished. The DSD framework that was sold as a shift away from surgical intervention, but it never actually eradicated it as an option (p112). Indeed, it keeps ambiguous the difference between medically necessary surgical intervention and culturally desired cosmetic surgery (p112). (Note from Elizabeth: funny how *this* ambiguity is acceptable to doctors.)
What DSD really changed was a shift from “fixing” the child with surgery to instead providing “lifelong ‘management’ to continue passing” (p112), resulting in more medical intervention, such as through hormonal and behavioural therapies to “[keep] it in remission” (p113).
Cheryl Chase coined the “intersex treadmill’: the never-ending drive to fit within a normative sex category (p113), which Spurgas deploys to talk about the proliferation of “lifelong treatments” and how it creates the need for constant surveillance of intersex bodies (p114). Medical specialization adds to the proliferation, as one needs increasingly more specialists who have increasingly narrow specialties.
There’s a cruel irony in how the DSD model pushes for lifelong psychiatric and psychological care of intersex patients so as to attend to the PTSD that is caused by medical intervention. (p115) It pushes a capitalistic model where as much money can be milked as possible out of intersex patients (p116).
The DSD treatment model, if it encourages patients to find community at all, hence pushes condition-specific medical support groups rather than pan-intersex advocacy groups (p115)
Other stuff in the chapter
Spurgas does more Foucault-ing at the end of the chapter. Highlight: “The intersex/DSD body is a site of biosocial contestation over which ways of knowing not only truth of sex, but the truth of the self, are fought. Both intelligibility and tangible resources are the prizes accorded to the winner(s) of the battle over truth of sex” (p117)
There’s some stuff on the patient-as-consumer that didn’t really land with anybody at the book club meeting - we’re mostly Canadians and the idea of patient-as-consumer isn’t relatable. Ei noted it isn’t even that relatable from their position as an American.
***
Having now summarized the chapter, here's a summary of our discussion at book club...
Opening reactions
Michelle (M): the way the main lady involved became medicalized really made my heart sink, reading that.
Elizabeth (E): I do remember some discussion of intersex people in the 90s, and it never really grew in the way that other queer identities did! This has kind of helped for me to understand what the fuck happened here.
E: It was definitely a very insightful reading on that part, while being absolutely outraging. I didn't know, but I guess I wasn't surprised at how pivotal US-centrism was. The author was talking about "North American centric" though but always meant the United States!!! Canada was just not part of this! They even make mention of Quebec as separate and one of the opposing regions. I was like, What are you doing here, America? You are not the entirety of our continent!!!
E: The feedback from non-Anglophone intersex advocates that DSD does not translate was something that I was like, "Yes!" For me, when I read the French term - that sounded like something that would include vaginismus, erectile dysfunction - it sounds far more general and negative.
M: the fuckin' respectability politics of DSD really got under my skin, as a term! I know the importance, as a queer person, of not forcing people to ID as queer, but this was a lot.
E: it was very assimilationist in a way that was very upsetting. I knew intellectually that this was going on. There was such a distinct advocacy push for that. The coddling of parents and doctors at the expense of intersex people was such a theme of this chapter, in a way that was very upsetting. They started out with this goal of intersex liberation, and instead, wound up coddling parents and doctors.
Solidarities
M: I feel like there's a real ableist parallel to the autism movement here… It dovetails with how the autism movement was like, "Aww, we're sorry about your emotionless monster baby! This must be so hard for you [parents]!" And it felt like "aw, it's okay, we'll fix your baby so they can interface with heterosexuality!" [Note: both of us are neurodivergent]
E: A lot of intersexism is a fear that you're going to have a queer child, both in terms of orientation and gender.
E: You cannot have intersex liberation without putting an end to homophobia and transphobia.
M: We're such natural allies there!
E: I understand that there are these very dysphoric ipsogender or cisgender people, who don't want to be mistaken as trans, but like it or not, their rights are linked to trans people! When I encounter these people, I don't know how to convey, "whether you like it or not, you're not going to get more rights by doing everything you can to be as distant as possible."
M: it reminds me of the movements by some younger queers to adhere to respectability politics.
E: Oh no. There are younger queers who want respectability politics????
M: well, some younger queers are very reactionary about neopronouns and kink at pride. they don't always know the difference between representation and "imposing" kinks on others. In a way, it reminds me of the more intentional rejection of queer weirdos, or queerdos, if you will, by republican gays.
E: I feel like a lot of anti-queerdom that comes out of the ipso and cisgender intersex community reads as very dysphoric to me. That needs to be acknowledged as gender dysphoria.
M: That resonates to me. When I heard about my own androgen imbalance, I was like, "does that mean I'm not a real woman?" And now I would happily say "fuck that question," but we do need an empathy and sensitivity for that experience. Thought not tolerance for people who invalidate others, to be honest.
E: The term "iatrogensis" was new to me. The term refers to a disease caused or aggravated by medical intervention.
M: So like a surgical complication, or gender dysphoria caused by improper medical counselling!
The DSD debate
ei: i think the "disorder" discussion is really interesting. in my opinion, if someone feels their intersex condition is a disorder they have every right to label it that way, but if someone does not feel the same they have every right to reject the disorder label. personally i use the label "condition". i don't agree with forcing labels on anyone or stripping them away from anyone either.
M: for me, it felt like a cautionary tale about which labels to accept.
ei: i'm all around very tired of people label policing others and making blanket statements such as "all people who are this have to use this label”... i also use variation sometimes, i tend to go back and forth between variation and condition. I think it's a delicate balance between being sensitive to people's label preferences vs making space for other definitions/communities.
We then spoke about language for a bunch of communities (Black people, non-binary people) for a while
E: one thing that was very harrowing for me about this chapter is that while there was this push to end coercive infant surgery, they basically ceded all of the ground on "interventions" happening from puberty onward. And as someone who has had to fight off coercive medical interventions in puberty, I have a lot of trauma about violent enforcement of femininity and the medical establishment.
ei: i completely agree that it's psychologically harmful tbh…. i was assigned male at birth and my doctors want me to start testosterone to make me more like a perisex male. which is extremely counterproductive because i'm literally transfem and have expressed this many times
Doctors Doing Harm
M: for me, the validation of how doctors can be harmful in this chapter meant a lot.
E: something that surprised me and made me happy was that there were some psychiatrists who spoke out against the DSD label. As someone who routinely hears a lot of anti-psychiatry stuff - because there's a lot of good reason to be skeptical of psychiatry, as a discipline - it was just nice to see some psychiatrists on the right side of things, doing right by their patients. Psychiatrists were making the argument that DSD would be psychologically harmful to a lot of intersex people.
ei: like. being told that something so inherently you, so inherently linked to your identity and sense of self, is a disorder of sexual development, something to be fixed and corrected. that has to be so harmful
ei: like i won't lie i do have a lot of severe trauma surrounding the way i've been treated due to being intersex. but so much of my negative experiences are repetitive smaller things. Like the way people treat me like my only purpose is to teach them about intersex people …. either that or they get really creepy and gross. I’m lucky in that i'm not visibly intersex, so i do have the privilege of choosing who knows. but there's a reason why i usually don't tell people irl.
M: intersex and autism have overlap again about how like, minor presentation can be? As opposed to the sort of monstrous presentation [Carnival barker impression] "Come see the sensational half-man, half-woman! Behold the h-------dite!" And like - the way nonverbal people are also treated feels relevant to that, because that's how autism is often treated, like a freakshow and a pity party for the parents? And it's so dehumanizing. And as someone who might potentially have a nonverbal child, because my wife is expecting and my husband and she both have ADHD - I'm just very fed up with ableism and the perception of monstrosity.
Overall, this was a chapter that had a lot to talk about! See here for our discussion of Chapters 5-7 from the same volume.
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