Intersex

[Tootsurly]

Bit of a thought experiment, plus curious as to how much people know about intersex conditions / DSDs.

This is slightly Black Mirror, although not totally beyond the realms of possibility. If there ever came a point where anything specifically related to being male or female required a DNA test to determine your sex before participating, what would happen to intersex people whose chromosomes didn't match their outward appearance (i.e. genotype and phenotype don't match)?

You’ve indicated yourself that it’s a meaningless term, seeing as it supposedly includes you and the bloke you were deriding for being excited at the prospect of him being a special third sex.

I don’t really care what made up terms people use to describe themselves, as long as they aren’t appropriating terms that refer to something they aren’t (eg ‘female’ ‘girl’ ‘woman’) or calling me something dehumanising (eg ‘menstruator’ ‘womb haver’ ‘body with a cervix’).

But if you want a conversation (and I’m presuming that you do, or why are you here?) you need to use words with understandable definitions.

Hi OP, I really hope I’m not being offensive but I’m wondering why you describe Swyer syndrome as a female DSD. I believe people with Swyer’s have a female body but XY chromosomes. Is it the convention to call the syndrome a female DSD? Sorry, just genuinely curious about how DSD conditions are formally categorised. I’d have probably just said a DSD myself, without specifying male or female, but I don’t know the usual conventions.

Understood.

I just prefer to focus my efforts on the impact of it all. There will be people who believe that we all have a gender identity. There will be people who believe that it's possible to be intersex (between the sexes). There will be people who believe in God/Allah.

That's all fine, as long as they don't impose their belief on everyone else and force them to accept it as true.

I don't use preferred pronouns (except in limited circumstances e.g. I have occasionally done so to keep a conversation going), I just avoid third person pronouns altogether if someone has a gender identity that differs from their sex. I also avoid saying things like "correct pronouns" because one person's version of correct is different from another's. I see it similar to religion because it all depends on what someone believes, or doesn't: to me god doesn't exist but to a Christian he does. Neither of us is "correct".

So if someone with a DSD is happy saying "intersex" and isn't demanding that everyone accepts that sex is a spectrum, fair enough. I won't use the term intersex myself but I'm not going to worry about that person's choice of word. It's also interesting to hear it's not considered offensive, although I'm aware that there are people with DSDs who do consider it so.

While Swyer himself did refer to the condition as a disorder of male anatomy, it is current practice among medical practitioners to refer to it as a disorder that women have.

When I was on X during the Olympics, it frustrated me no end that Emma Hilton wouldn't categorically say whether Swyer was a female or male DSD. She just described it as "a DSD".

Eventually someone helped me out and explained the equivalent of the diagram that has been posted above by flowchartnotrequired

I now also see Swyer's as a female DSD because of the impact of the missing SRY. I think I can also see why Emma Hilton doesn't categorically say male or female, despite her saying that every DSD is sex-specific. I'm assuming it's similar to my pronoun avoidance in that it's going to provoke a reaction either way: if she said it's a female DSD there will be people who disagree (because the body hasn't been organised around the production of eggs) and if she says it's a male DSD there will be people who disagree (because the body hasn't been organised around the production of sperm).

As I understand it, it's the only DSD which comes close to making sense of the false statement that "all foetuses start off as female". The default pathway is to develop female reproductive organs if there is no active SRY. (Unfortunately it ruins Mr Menno's brilliant song "Y chromosome" because being male is about the action of the SRY gene, that sits on the Y chromosome the vast majority of times).

Unlike 5-ARD, with Swyer there will be no testosterone boost at any time. Meaning there will be no development of any male secondary sex characteristics.

If I put myself in the shoes of a person with Swyer (or a child, pre-puberty, with 5-ARD) I can fully understand why they say they are female. I do too. However, I would have been mistaken regarding the child with 5-ARD as when puberty hits, this child's actual (male) sex would become clear. The testicles were there all along and the penis will naturally grow at this point. That must be a horrible experience to go through. But for someone with Swyer this will never happen and their physical development pathway will remain as it started. To develop any secondary sex characteristics, they'll need to take hormones. Logically, anyone who has grown up with Swyer will take oestrogen. Whether I'm "correct" that someone with Swyer is female becomes a matter of opinion, which will be divided.

Swyer probably also helps to explain Kirsty Blackman's ridiculous statement in parliament that she didn't know her chromosomes but was "probably XY". She has children and she has breasts. More importantly, if she had Swyer, she would have been told her chromosomes were XY at the time of diagnosis and that in order to develop breasts she would need to take oestrogen (and she would need to have IVF if she wanted to try for children). Surely she'd remember going through all that 🤦‍♀️ So of course she knows her chromosomes... although her grasp on biology is evidently very shaky, even without the complexity that Swyer adds, so maybe not. That doesn't stop the rest of us knowing them though from the facts that we know about her.

Until I saw the diagram again, I had forgotten that people with Swyer had a uterus, so I'll take back my earlier suggestion of spotting this DSD on an ultrasound. D'oh. (But it would still be possible to identify 5-ARD as I suggested above, because there would be no uterus and no penis/scrotum, which should flag as an anomaly).

Edited for clarity.

Not sure where I screenshotted this from but it gives a lot of DSDs and whether they are associated with being female or male. With Swyer syndrome you could in theory carry a pregnancy but couldn't get pregnant naturally.

Thanks @Ingenieur, @BonfireLady and @dementedpixie, much appreciated.

I’d always have considered people with Swyers to be women but was unsure of the medical or scientific classification of the DSD if you see what I mean.

Just to add, it’s not always the SRY gene that has a mutation or deletion to give this condition. That’s the gene affected in 15 - 20% of cases but there are others in different cases. Not all are on the Y chromosome either, they’ve been found on the X chromosome (and show X-linked inheritance) as well as on autosomes (ie the chromosomes other than the sex chromosomes). Some are unidentified. In some cases the woman with a SRY mutation has a father or brother with the same mutation, so in those cases it’s thought a combination of genes must be involved. So people who have Swyer Syndrome are all XY but as always it’s complicated.

Just to add, it’s not always the SRY gene that has a mutation or deletion to give this condition. That’s the gene affected in 15 - 20% of cases but there are others in different cases.

My understanding from my immersion into DSD facts earlier this year is that the root cause of Swyer is the lack of an actively functioning SRY gene. In every case.

From Emma Hilton's info on X:

"sometimes the SRY gene is missing/broken, or sometimes other genes that SRY hooks up with are missing/broken."

https://x.com/FondOfBeetles/status/1819697582647484898?t=I5Ur_aJabFIUkK4bFC52IA&s=19

In the tweet, she comes close to saying that someone with Swyer is male but doesn't actually do that (my bold):

"Swyer syndrome doesn’t include the typical aspects of male development that are relevant for sport. Babies don’t masculinise in any hormone-driven way (although people with Swyer are a little taller than females)."

If she had said "typical females" or similar, her whole explanation would have been neutral on the question of what sex someone is when they have Swyer.

Streak gonads are neither testes (no SRY function) nor ovaries (two Xs are needed), so OP could be described as without a sex. But, in reality, she has all the other female characteristics, and no male ones. Attaching significance to the Y is arbitrary.

@Rainbowandgrey I realised after posting that it looks like I'm disagreeing with you. I'm not agreeing or disagreeing as I have no knowledge of the majority of what you said in your comment. However, I think it's much simpler to understand it as a lack of active SRY, regardless of the root cause of that inactivity.

My head nearly exploded with too much information during the Olympics stuff and this was my sanity saving takeaway re the difference between males and females i.e. all males have an active SRY, all females don't have an active SRY. Hence me saying above that this ruins Mr Menno's song: "you're male because of that active SRY gene" wouldn't scan in the lyrics at all. It's still a great song though, with lots of excellent points about gender identity...

As you say, people who have Swyer Syndrome are all XY but as always it’s complicated.

Edited to add what is hopefully the right YouTube link. No idea how I ended up with a random video about donkeys when I copied it the first time. Odd.

This ⬆️

One thing. You say:
'I see it similar to religion because it all depends on what someone believes, or doesn't: to me god doesn't exist but to a Christian he does. Neither of us is "correct".'

Perhaps neither of you is "correct" (whatever that might mean); however, one of you is certainly correct (in the ordinary everyday English sense). Either god exists or he doesn't.

Same is true about gender identity: either there is such a thing or there isn't. (Actually, there is no such thing as gender identity. See, e.g., Byrne on gender identity )

I understand where the 'neither is "correct"' comes from: an entirely laudable concern for tolerance. But it's important not to throw away the baby of facts and truth with the bathwater of intolerance.

As one of my favourite philosophers used to joke, "I know where you're coming from; it's just that relativism isn't true for me." (Think about it: do you see how that points up your mistake?)

[Edited to fix link.]

My understanding from my immersion into DSD facts earlier this year is that the root cause of Swyer is the lack of an actively functioning SRY gene. In every case.
I don’t think so. Not according to NORD anyway but I’m not an expert.

I'm sorry. here's that link again: Byrne on gender identity .

I haven't made a mistake.... I'm quite happy with what I said 😁

Christians and I will never agree who is "correct" about whether god exists or not. Likewise, someone who believes that "we all have a gender identity" and I will never agree which set of pronouns are "correct".

It doesn't matter who is "correct". What matters is that nobody forces someone else to accept their belief as if it's true or uses their belief to radicalise someone into doing an extreme act.

Christians don't force people to accept their belief as true. Gender identity believers do e.g. in women's sports, claiming that sex is a spectrum and that it's "assigned at birth".

Radicalised Christians can end up doing extreme acts related to their belief in god that cause themselves and/or others harm (e.g. Waco, Jonestown). Obviously the same is true of other religions. Radicalised believers in gender identity can too (e.g. the medical scandal that self-identifies as "gender affirming care").

I think it matters whether there is a god. I also think it matters whether there is such a thing as gender identity.

Why does it matter to me? One reason has always been to do with my children - and, more recently, their children. I just do think it's important to tell children the truth, including that there is such a thing as truth.

It cannot be true there's no truth ... nor could it be correct that nothing is correct. Can you see why?

This is not to say we should discriminate against people who think differently - about god or gender identity ... or truth for that matter. We should not treat such people badly at all. We should treat everyone as well as we can. (That's also something I taught my children because I think it's true.)

I may be mistaken about some or all of this. Of course recognising there is a fact of the matter is far from determining what that fact is. But relativism - pretending all beliefs are on a par and none more true than any other - is a bad aspect of post-modernity with all sorts of egregious consequences, none more so than in its queer-studies-related consequences for children (and others). So it is to be avoided - even by those such as you who very likely abide not at all with post-modernist queer-studies.

Post-modern relativism =/= reluctantly accepting that some people believe really stupid things.

Not using pronouns is the same as not wearing a hijab. Both are part of belief systems I do not subscribe to.

I've seen this thread but have avoided jumping in... knowing, as someone with a DSD, that would be tough going. Though, I am impressed with the general tone, and grateful to the OP for participating in the conversation...

While I appreciate the benefit of saying that there are male DSDs and female DSDs, I don't really know if classification through a table or flowgraph really works.

I see a table a page or two back classifies CAIS as a "male DSD". This seems inconceivable for most girls and women with CAIS and their families. Twenty years back I was in a support group meeting where a scientist was showing a family tree which left everyone in the room completely puzzled, until someone clarified that the CAIS individuals were being shown with the male symbol. This was a strange moment, even though everyone there knew what CAIS was.

I have a much more rare 46XY condition. My diagnosis at age 16 relied on a laparoscopy exam as my gyn/obs doctor - with experience of treating thousands of women and daily looking at women in stirrups - couldn't see anything different though examining me several times after trying to induce menstruation with several hormones over months. And yet the scientific table would probably classify me as having a "male DSD".

If I ever think "I wish I didn't have this condition", the alternative in my mind is that I would have the same life I've had always, but maybe with the possibility of having children, and more feminine curves. But never is the scientific alternative, that if I didn't have this one gene damaged I would be male. (I am finding it even difficult to write that I would be a... man. It's just unimaginable.)

I was friends with several women with PAIS and one lovely woman with 5-ARD; at that time it was common for the testes to be removed before puberty and the girl being treated with estrogen. I don't think any of these friends ever thought of having a "gender identity" - they (and I) couldn't see ourselves as male. None had any androgenisation or thought of any fluidity between the sexes. We all knew the science and the whole XX/XY thing but just went on with our lives as women.

This was all early days of the trans movement, but our Support Group was courted by several of the trans organizations in a pursuit of some medical justification that MtF trans people (I know, old-fashioned term) suffered a mild form of Androgen Insensitivity. I recall the group was adamant to stay away from any such umbrella. It seems in the end the GRA offered a different avenue without needing to have a medical justification for someone to be trans.

Sorry for all this rambling, I have not read the whole thread but just thought I'd put in a few words as someone with an intersex condition or DSD. (I don't like either term as it happens.)

Orkid I think for classifications like yours that it’s largely irrelevant that it’s technically a ‘male DSD’ unless we are talking competitive sport and for that the sports federations probably need in depth, individual evidence to decide either way.

Someone who was assumed to be female right up to the point of 15/16 when the lack of menarche prompts further investigation (and then has medical intervention involving exogenous female hormones) is going to look female and be socialised female and have none-to-very-few of the factors that make males dangerous to females (possibly a little extra height and strength but not in an overwhelming or obvious way due to no male puberty).

Everyone who meets someone with one of these variants of sexual development will simply assume them to be female and will never know about the karyotype mismatch unless they are directly involved in the persons medical care/sports monitoring or are told about it by the person themselves or their friends or family.

The only reason these particular conditions (compared to something like un intervened 5ARD) come up in GC conversation is because of the trans force-teaming via the ever growing letters abbreviation or by people self IDing as ‘intersex’.

As I understand it, it's the only DSD which comes close to making sense of the false statement that "all foetuses start off as female". The default pathway is to develop female reproductive organs if there is no active SRY. (Unfortunately it ruins Mr Menno's brilliant song "Y chromosome" because being male is about the action of the SRY gene, that sits on the Y chromosome the vast majority of times).

I have a feeling that this may have been how it was explained to me several decades ago at the point when I was diagnosed, and the misconception has stuck.

Yes, you're right. Accepting that people believe different things is not relativism.

But to believe relativism true would be a bit silly, no? Whether post-modern or not. (I try to avoid labelling people's beliefs 'stupid'. But, well, I suppose, if the cap fits ...)

-- If you want to follow this up a bit, you might have a look at where I got that joke '... true for me ...' in an earlier post. Here it is, enlarged:
"... is it not obviously contradictory to hold a point of view while at the same time holding that no point of view is more justified or right than any other? Alan Garfinkel has put the point very wittily. In talking to his California students he once said, aping their locutions: 'You may not be coming from where I'm coming from, but I know relativism isn't true for me'." (From Hilary Putnam, Reason Truth and History, P. 119)

[Sorry for the derail. I'll stop there. Have the last word if you like.]

I think I have already said this earlier in the thread, but it probably bears repeating.

I have a uterus, fallopian tubes, a cervix, a vagina and a vulva. I do not have a penis or testes and I do not produce - and never have produced - testosterone (unlike XX women). I look entirely female. I am an average height for a woman, I have a female jaw, I have small hands and feet. There is literally nothing male about me that is visible, externally or interally.

Yes, I have XY chromosomes, but for whatever reason (faulty SRY gene or some other reason) they did not cause my body to develop along the male pathway, so they are essentially "void". As I understand it (and I did check this with people who have a better grasp of biology than I do, but apologies if I do not explain it 100% accurately) chromosomes do not make you male or female in and of themselves. Rather they set in motion a train of events that leads to the development of a male or female foetus.

Someone who was assumed to be female right up to the point of 15/16 when the lack of menarche prompts further investigation (and then has medical intervention involving exogenous female hormones) is going to look female and be socialised female and have none-to-very-few of the factors that make males dangerous to females (possibly a little extra height and strength but not in an overwhelming or obvious way due to no male puberty).

You are correct about extra height (this is typical for Swyer women), but what would cause extra strength?

If I ever think "I wish I didn't have this condition", the alternative in my mind is that I would have the same life I've had always, but maybe with the possibility of having children, and more feminine curves. But never is the scientific alternative, that if I didn't have this one gene damaged I would be male. (I am finding it even difficult to write that I would be a... man. It's just unimaginable.)

Yes, this is the biggest head-fuck of all. There is not a "me" without Swyer's, a me who went through puberty at the appropriate time, who isn't infertile and who doesn't have osteoporosis and need to take hormones. The version of me without Swyer's is male.

Ironically, whilst I sometimes don't feel entirely "womanly", I have never doubted that I am female for a second.