intersex-support

[intersex-support]

I got accepted onto long-term disability through my employer/the state, but that doesn’t take effect until August 1st because it’s based off of my resignation date with the district.

I’m making monthly $672.01 COBRA payments to keep my insurance until then, which I need for 100% of my nutrition and hydration through feeding tube and central line.

I’ll need $2016.03 to make it via COBRA alone until August. That’s on top of all of our other bills and my spouse working full-time.

If you can’t donate, please support me by reblogging and following my other socials so I can monetize my content on other platforms.

@ paralyzedguts on TikTok and Instagram, I make educational content about disability and other social justice topics. I’ve been featured on NowThis Impact and work with organizations like The Oley Foundation and G-PACT.

$0 / $2016.03

Cash.app: $forcewielder

Message for PayPal and Venmo

LinkTree

Amazon Wishlist (medical supplies)

Feeding tubes and port under the cut!

[intersex-support]

Hello!

I saw the previous ask about Hypogonadism and I was wondering if Hypogonadism could occur without being related to other intersex variations (Chromosome related) BUT also not be cause by other outside factors (Like cancer, medicine, diet, stress I guess?)

Like is it possible for the gonads to just have formed wrong? (I'm referring to Primary Hypogonadism in this case)

Hi anon!

So there are a variety of factors that can cause primary hypogonadism outside of some of the intersex variations we've been discussing on the blog today (such as Klinefelters, Turners, Kallmanns), and also aren't things like environmental risk factors, diet, etc. This article mentions that undescended testicles that are never treated could cause primary hypogonadism. This article explains that fragile X syndrome and galactosaemia are two examples of other conditions that can cause hypogonadism. (There are also a lot of factors that can sometimes cause primary hypogonadism such as cancer treatment, hemochromatosis, mumps, and also normal aging, as well as factors that can sometimes cause secondary hypogonadism, such as HIV, Pituitary disorders, certain medications, malnutrition, and stress).

Beyond that, what I think you might be curious about is gonadal dysgenesis, which is essentially a term for when gonads develop atypically or don't develop at all, and is associated with a wide variety of presentations of symptoms, including chromosomal variations, hypogonadism, and various reproductive structures. There are many different intersex variations associated with gonadal dysgenesis, and there are a lot of different ways that gonadal dysgenesis shows up, but it can potentially cause disruptions in ovarian or testicular or ovotestes function. There's some case studies out there exploring different intersex people's experiences with hypogonadism with gonadal dysgenesis.

So basically, long answer is yes, atypical gonadal development is potentially a cause of hypogonadism for some people!

Hope that helped, anon!

#asks #hypogonadism #intersex #actuallyintersex #gonadal dysgenesis #hope this makes sense! there are so many causes of hypogonadism #some of which are very clearly associated with intersex. some of which are more associated with other risk factors or chronic illnesses

[intersex-support]

Hi, thank you sm for running this blog

I wanted to ask if you maybe had any resources to figure out if like, natal surgeries to "fix" intersex traits were done to someone?

I don't have acess to a doctor atm and I'm worried I might have genital scarring. Ik it's a legally mandatory practice here if the kid is intersex, but I can't find any resources on my own

Thank you so much again, sorry if my language isn't appropriate, I'm still new to this

Content note: discussion of genitalia and surgery

Hi anon,

Hope you're doing well. Unfortunately, there aren't a ton of resources out there, but I can try to share what I have. A lot of this will depend on what kind of variation you have and what kind of surgery might have happened.

One thing that can sometimes be a sign that you've had intersex surgery is if you had to see a urologist a lot as a kid, or if your medical records show that you went to a urologist as a baby. If you ever remember having any unexplained surgeries that might have been explained as for removing a cancer risk, or for fixing urinary function, or things like that, sometimes intersex surgeries are put in the medical record under those terms instead.

This article has a photo of an intersex adults scars from a surgery they had as a kid. This study has diagrams of clitoroplasty (tw for cissexist language, medical talk, and genital surgery diagrams). The intersex reddit has some people sharing photos or discussing scars in a way that might be helpful. If you have genital scar tissue, another way to notice it might be if you have a lot of unexplained pain down there or issues with urination such as frequent UTIs. In general, if you want to search to do your own research, the most common types of intersex surgery are gonadectomy, clitoroplasty, clitoral recession, vaginoplasty, hypospadias repair, and sometimes phalloplasty.

Sending all the good wishes your way, anon, and please feel free to come back if you have any other questions we can help answer.

💜💜💜

#asks #genitalia talk tw #intersex surgery #nonconsensual surgery tw #intersex #intersexism #<- referring to the surgery and the articles not the anon ask to be clear. you didn't say anything wrong

[intersex-support]

I'm concerned I may have an intersex condition and I'm not sure where to go from here. Could I ask for some advice?

Essentially, I'm realizing that I... probably didn't complete puberty the first time. I'm afab, and I did get a growth spurt and body hair and start to grow breasts, but I never developed past what I'm now realizing was probably about stage 3 on the Tanner Scale. My breasts stayed small enough that I could easily pass as male without binding (I'm nonbinary) and I was never able to find a bra small enough to fit me. Overall I was kinda just built like a tall preteen, and frequently mistaken for one well into my 20s

I'm also diagnosed with presumed endometriosis and had extremely irregular and painful periods for my entire life. Birth control pills didn't fully fix it and depo shots just made it worse, but when my gyno put me on nexplanon about 9 months ago it stopped my period altogether. More than that though... I think I'm going through puberty again, at the age of 25. I started experiencing breast growth and female-pattern fat redistribution that's very similar to what my transfem friends are going through on HRT, and I realized... my medication is literally just progestin. I'm essentially on feminizing HRT as an afab person. And after 9 months on HRT I've finally progressed to what looks like stage 4 on the Tanner Scale and I'm getting closer to stage 5

I did some research on what could be happening when I first started noticing the changes and found out that recent studies have linked endometriosis to estrogen dominance (either an excess of estrogen or a deficiency of progesterone) and the symptoms of both estrogen dominance and low progesterone seemed to fit me. Since the changes started after I went on progestin-only medication I figured that was my answer, that I had low progesterone bc of my endometriosis and it stunted my development. But recently I was talking with an intersex blogger who pointed out that having hormone deficiencies so severe they interrupt puberty isn't common for endometriosis and it might be a symptom of an intersex condition, and they recommended for me to look into hypogonadotropic hypogonadism

I've been doing research on it and. It really seems to describe what I went through. The only things that don't really fit me are the short height and lack of period, but that may just be bc I had an incomplete puberty instead of an absent one. More specifically though I learned about Kallmann Syndrome, and I know it's relatively rare, especially in afab people, but a lot of the other symptoms seem to fit me. The first, notably, is that I've had hyposmia my entire life which is a defining feature of the condition. I also have spinal defects: scoliosis, hyperlordosis, and cervical kyphosis. I even have some unexplained motor control issues that I'm now concerned may be mild ataxia, like my lifelong constant hand tremors and a general "clumsiness" that makes it difficult for me to get my limbs to do what I want—both of which cause frequent issues for me

I really wanna get some solid answers but I'm... not sure where to go from here. Would getting my hormones checked be a logical next step? If it's specifically progesterone that's affected for me I'm not sure if the tests will be able to tell the difference between natural progesterone and synthetic progestin though, and I can't go off my medication bc my endo is so bad without it that I won't be able to work. Maybe that's not even the hormone they would need to check anyways though, maybe it would be GnRH? Idk, I'm just a little bit lost. I'm considering going to Planned Parenthood to ask about it (my current gyno has not been very forthcoming with information about my own condition) but I'm nervous about seeing them without knowing if it's something they can even help with and I'm also worried about going in with too much information and having a doctor dismiss me as having given myself a "google diagnosis" 😣

Any advice on the process of seeking a diagnosis? Or any other next steps in general?

Also—I keep having this nagging thought in the back of my head that says even if I do turn out to have a form of HH it wouldn't "matter" now that I'm on HRT and finishing puberty. Any opinions on this? Would I still "count" as intersex if that's the case? And what if I can't get a diagnosis?

Hi anon,

So sorry for the late answer. Hope you've been doing well.

It definitely makes sense to me that you would be looking into Kallmann Syndrome, especially since you have hyposmia and that really is such a key part of that condition. I agree with the other blogger that it's worth looking into why your puberty was disrupted/incomplete and regardless of whether it's Kallmann Syndrome, another intersex variation, or something else, that might be helpful information to have. And I totally get what you mean about it "not mattering" to get a diagnosis now that you're on HRT, and honestly, what is most important is your priorities and wishes in this process.

It is completely valid to want this information and search for a diagnosis, and to want an answer even though you've now found a treatment that works. If you decide at some point through the process that diagnosis is not a priority for you right now, that's okay too--what matters is that you are the authority here and that you have the right to feel whatever way you feel about it. The intersex community has such an incredible amount of variety--we all have so many different variations, different experiences, ways that symptoms show up or don't show up, and there's no "right" way to be intersex. All ways of being intersex are valuable and real ways that we're going to show up in our community.

The process of seeking a diagnosis can be kind of long and frustrating, but I'd say the first step would definitely be trying to get a referral to an endocrinologist or any doctor who is willing to run a full hormone panel on you, (generally this includes estrogen, testosterone, progesterone, FSH, LH, SHBG, and thyroid hormones). For Kallmann Syndrome, they would be looking for low estrogen, FSH, and LH levels. They would probably also run some other blood tests checking general blood chemistry levels to rule out any other causes. The next step for Kallmann diagnosis is sometimes an MRI to rule out any physical abnormalities on the pituitary gland. Finally, there is also molecular genetic testing for Kallmann that can help identify the specific genetic mutation, but the diagnosis can also be made without genetic testing or an MRI. Planned Parenthood might be a good first step, either to actually do the first set of labs or to provide you to a referral to a endocrinologist who would be willing to order the labs. It can definitely be really hard navigating doctors who are dismissive of our own self-knowledge and research, and I've found it can sometimes be more helpful to just explain your symptoms (lack of periods, lack of puberty) and ask for a full hormone panel rather than specifically telling the doctor that you want to test for Kallmann's.

Overall, just know that you absolutely aren't alone in this and that you are welcome to come back to the blog with any other questions or just to vent. It can be confusing and overwhelming trying to navigate the medical system, and you deserve support! Best of luck on this journey 💜

#asks #intersex #kallmann syndrome #hypogonadism

[intersex-support]

Hope this isn’t too NSFW and I’ll be blunt about it but if an intersex person had their dick removed as a baby and then go on testosterone will they grow a T dick? (Asking as a possibly intersex trans masc person who possibly had their dick removed as a baby)

content note: discussion of genitalia, surgery, medical language

Hey anon,

So unfortunately, I don't think we know the answer to this question, and this is something that is likely going to be different for every intersex person who's gone through surgery. It will probably vary a lot depending on what your specific variation is and what surgery techniques were used. There are several different types of "clitoral reduction surgeries" that use different techniques, and there's a difference between recession clitoroplasty and clitoroplasty with reduction, for example, in terms of how nerves are preserved or not. This article talks about how people with CAH who underwent an incomplete clitoral recession then later had clitoral growth due to testosterone at puberty, so it certainly seems possible that even some people with CAH who survived surgery, could potentially experience growth on T. (TW for cissexist language, intersexism, and photos of surgeries in that article).

Long story short: it's something that is in theory possible, but would depend a lot on what your intersex variation is, what surgeries you've been through, and some other factors. That might be something you would need to talk to endocrinologist about while you were getting hormones prescribed to better understand your specific case.

Best wishes, anon, and feel free to reach out if you have any other questions or need support.

💜💜💜

#asks #intersex #intersex surgery tw #nonconsensual surgery tw #genitalia talk #genitalia talk tw #intersexism #unfortunately it feels like pretty much everything that we know about transition while intersex is just like 'well this might happen #'or this sometimes happens to some people but not to others and all of us are just putting together anecdotal information #would love to make a zine with some other intersex people about transition and what it looks like for us

[intersex-support]

Has anyone with ovotosticular syndrome ever had to have an orchiectomy?

TW: discussion of surgery

Hi anon,

I know two people in real life who have gotten an orchiectomy (and/or hysterectomy) and have ovotestes, and there are also a lot of case studies in the medical literature with the doctors talking about performing orchiectomies on people who have ovotestes. No one active on this blog has any personal experience, but if you have any specific questions I can try to pass them on to the people I know who had an orchiectomy. Or if any followers have relevant personal experience and want to send in an ask, please feel free.

Best of luck, anon, and please feel welcome to send in any other asks if there's any specific information you need that I can try to find!

#asks #intersex surgery tw #intersex #orchiectomy #sorry i can't be more helpful--don't have that much personal experience with orchiectomy but am happy to look through the medical databases #to look for any helpful info though #genitalia talk tw

[intersex-support]

Does hypogonadism count as interex? All I see is people talking about feminization and masculization when I got neither, so I don't really feel included.

Unlike typical intersex people, I was never given hrt, because they said I was "too young to have hormone issues", so I don't know if there's a point calling myself intersex for social/relateblity reasons.

I remember seeing a post about someone who got hypogonadism from cancer treatment, and everyone saying they don't count as intersex in the comments. I was just born like this I guess, nothing to do with any treatments, but I felt bad reading it.

It seems like no one what I have.

Sorry for being venty/negative, I don't know any other blogs.

Hi anon!

I can definitely understand how isolating that would feel to not see any representation of people who have your variation, or feel like most of the time the things that people talk about as "intersex issues" don't feel relatable to you. You deserve to feel supported and welcomed in the community, and you don't have to apologize for venting--there's always room for that here.

There are definitely a lot of intersex variations that are related to hypogonadism (Kallman Syndrome, Turner Syndrome, Klinefelter Syndrome, etc). InterACT lists hypogonadism as something that can often be an intersex variation on their glossary:

"A person with hypogonadism produces lower-than-typical levels of hormones like testosterone and estrogen, or sometimes none at all. This can affect how a person’s secondary sex characteristics develop, and can also affect their fertility. Hypogonadism can be a result of a difference in how someone’s brain signals their gonads to produce (or not produce) hormones, or it can be a feature of their gonads directly. Hypogonadism is not always caused by an intersex variation, but can be related to Klinefelter Syndrome, Turner Syndrome, or several other variations."

So yes, hypogonadism definitely can "count" as intersex and you are welcome in the intersex community. In fact, I met multiple intersex people with hypogonadism at the intersex conference I went to last summer, so you definitely are not the only one. And I think that there is a lot of room for solidarity and resource sharing between people whose hypogonadism is associated with intersex variation and people whose hypogonadism is caused by side effects of treatment, regardless of whether people personally identify with the intersex label or not.

Anyway, all this is to say that yes, hypogonadism is considered intersex and there are resources and support groups out there if you are interested in exploring.

Best wishes, anon 💜💜💜

#asks #intersex #hypogonadism

[intersex-support]

I wanted to pop on for a moment and say that when I see all of the asks and calls for support from intersex people that we can’t get to, it’s really sad. I think a lot of us suffer from fear, isolation, loneliness. There are resources out there, there’s community, there’s information that we can direct people towards, but from personal experience I don’t think a good majority of it is sustainable.

It’s difficult for us to connect and to maintain healthy relationships with other intersex people even once we find them, it’s difficult for us to navigate the different power dynamics, it’s difficult for us to even have a single conversation because it can be emotionally heavy, maybe we have our guards up, and we’re not above being reactive and defensive towards each other.

I think this is bound to happen in any group of people where a large percentage have experienced harm. I can’t think of a single intersex person I’ve met who hasn’t struggled with community and support. There isn’t a perfect solution that can be offered, I just hope we know that none of us feeling this way are alone.

#mod stev #actuallyintersex #actually intersex

[intersex-support]

help me stay away from my abuser's house a few more weeks

long story short, im houseless. have been since the end of november. i have been fighting tooth and nail to avoid having to move back in with my abusive mother. i have nearly given up a few times but its become more and more apparent to me that i simply can not go there. i am hoping to go forward with my plan to stay at a dv shelter for a few months so i can hopefully get government housing assistance, but i need a few more weeks to a month at least at this airbnb to get my medical needs addressed before i do

please help me. i need at least $162 to pay for this airbnb through monday to begin with. i need $1528 for another month here, not including food. staying with my abuser comes with definitive risk of me being sexually assaulted, among other dangers.

ppal

vmo

cshapp

ko-fi (not an ideal place to send $ since ppal marks it as a business transaction but that is where the crowdfnding goal is)

please dont tag this with any tws for visibility's sake!

[intersex-support]

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.

[intersex-support]

January Pick: Envisioning African Intersex

Continuing our trend of alternating between fiction and non-fiction, our pick for January is Envisioning African Intersex: Challenging Colonial and Racist Legacies in South African Medicine, by Amanda Lock Swarr.

This is an academic text, so we won't be reading the whole thing! To make it manageable, we will be reading the first three chapters:

The Introduction: Pathologizing Gender Binaries

Chapter 1: Colonial Observations and Fallacies

Chapter 2: Intersex in Four South African Racial Groups in Durban

To ensure everybody has access to the book, a pdf copy is available through the discord.

Content notice: this book will be talking about the history of intersexism, colonialism, and racism.

When we're meeting We will be meeting to discuss the four chapters on Fri Jan 26, at: - 12:30-14:00 Pacific (Vancouver, San Francisco, etc) - 15:30-17:00 Eastern (Toronto, New York, etc) - 21:30-23:00 Central European (Berlin, Paris, etc) for more time zones see here

To join the discord: https://discord.gg/U8ZucKwGPK Also see: our code of conduct

How much of the book do you need to read? You don’t need to finish it participate! You are welcome to skim and/or skip chapters as desired. Current & future book picks If this isn’t in the cards for you, we’re reading YA portal fantasy Across the Green Grass Fields this month (December), and in February we will be reading the sci-fi short story collection Power To Yield.

We'll be reading another non-fiction selection in March, but it is not yet decided, so let us know in the Discord what would interest you!

[intersex-support]

Hello everyone i know you already did a lot to me and to my family I'm shy asking your help and your support but this family really need your support ( i know them in person) Mohamed is a hemophilia patient who needs access to medicine and to do surgery on his knees, his 11-year-old daughter also needs thigh surgery (she was supposed to do it outside Gaza in November but couldn't travel due to the border issues). I appreciate you guys and love you. Share it as u can.

[intersex-support]

Working literally by myself the week of Christmas while my boss is on a cruise and she specifically set things up & did training so if I’m the only employee available to work the business can stay open while she is on cruises

But no holidays are paid for me anyways and my hours are more than halved for the week so if anyone wants to help a disabled paycheck to paycheck black ndn two-spirit stay afloat this holiday szn there is one right here

Setting a goal for the wages I’ll be missing but it’s ok if I don’t hit it, anything helps at all. 66/220

Heartemojie on cashapp + venmo, paypal is 13thead

[intersex-support]

I’m in the process of organizing a gofundme for a family to get out of Gaza and into Egypt. If anyone with a big following on Twitter can help me spread it there, please let me know.

[intersex-support]

Making this new pinned post for Ahmed @90-ghost Please donate and/or spread as much as you can.

[intersex-support]

Not even 4 days til thanksgiving and I’m in my room crying bc my grandpa thinks him & the other nonblack natives toootally did nothing to deserve the backlash from the black ndns in our tribe when they decided to literally segregate and outcast them.

So it is That time of year, nonblack natives & white ppl who’re observing the holiday feel free to check out the article I wrote on antiblack oppression in ndn country and the one I wrote about afroindigeneity, and feel free to tip me as well. heartemojie on cashapp & Venmo, 13thead on PayPal.

Black ndns add your info

[intersex-support]

Hey everyone! I wanted to give a little update about the state of the inbox and the status of the blog. Currently, we have 140 unanswered asks in the inbox. Right now, there's only one active mod, and I just do not have the time or ability to answer all questions as they come in. I know that can be frustrating, and I wish we had the capacity to answer everyone's questions.

When I do have time to answer questions, I'm trying to prioritize questions that are on topics that haven't been asked before, time sensitive questions, or questions that only take like a five minute answer. We have a lot of questions that are sent in that are pretty similar to questions that we've answered before, so I'm trying to think of ways to improve our tagging system and refurbish our FAQ so that there are more easily accessible resources.

I'm also thinking about making some summary posts like a step-by-step guide for researching intersex variations, some summary posts explaining differences between intersex variations with overlapping symptoms, etc. I thought that might be a helpful way so that we could reply to more asks and link to existing resources. So I wanted to ask followers what topics people feel are the most urgent, interesting, or helpful to have summary posts about. Feel free to reply to this post with any ideas or priorities you have.

Anyway, thank you all for all the patience and love you've shown this blog over the years! We really appreciate the community that's been created here and have so much love for all of you 💜💜💜

-Mod E

#intersex #actuallyintersex #blog stuff #i wish i could answer everyone's questions but i also have 470 unanswered questions on my personal blog LOL #there is just simply not that much time #also thinking about adding more mods but idk about interest or capacity for that