The problem with intersex surgeries

Before you read this post, let me warn you, I’m probably not going to say what you think. Well, that’s not quite true, there will be some people who will know what I’m gonna say and be annoyed by it. That’s cool. People reading my blog and being so incensed by it that they feel the need to write angry comments, telling me no one is reading my blog is like catnip to me. Thanks for the feedback. Anyway, on to the matter in hand because this is actually really important and I don’t feel like the damage done to advancements in intersex healthcare by trans activism is talked about enough…I may come back to that.

First of all, a story. A few years ago, my cousin had a baby. A lovely baby boy. Like all babies, he was perfect in every way. In fact, he was extra special because he had an extra thumb. Of course, an extra thumb is not a medical emergency, but like any difference that’s evident at birth, it’s a pause for thought (extra digits can be a sign that parents are more closely related than they realise, for example, which can lead to many other complications), so it was investigated. This included x-rays, physical examinations and a family medical history being taken along with genetic testing. Everything came back “normal” (what is normal? Etc. etc), so there was no need for any additional worry or tests, but the questioned remained of what, if anything, should be done about the thumb.

Now, I should point out, my cousin was not phased by the thumb. They called it his lucky thumb and compared it to Nemo’s lucky fin. They celebrated the thumb as much as the rest of him. However, when they sought advice and took into consideration possible future complications for fine motor development, alongside the understanding that sometimes surgery on birth differences such as these are better performed earlier in life, when recovery may be quicker and less traumatic, it was decided to remove the thumb. And so they did. He’s now an older child, happy with two thumbs. The lucky thumb not forgotten, but not there as something to worry about. The end.

What I want people to notice is the lack of outside interference there. My cousin and her husband were free to seek advice, do their own research and arrive at a decision about the best treatment for their child, without anyone calling them a bigot or feeling their own non-related identity was somehow compromised by it. When they googled for information, they weren’t bombarded with queer theory and internet quacks, talking about humans being a spectrum of thumb owners. No one was lobbying parliament to take away their right, and their child’s right, to evidence based medical care and advice. People born with clubfoot, or cleft palates weren’t involving themselves in the care of extra-thumbed children because they thought that had an impact on their own needs. Adults, who had found themselves unhappy with their own thumbs later in life, were not asked for, and did not feel the need to provide, their opinion.

This is not the case for parents of children born with ambiguous genitalia, nor, indeed people born with ambiguous genitalia themselves. Last week, I posted a blog by a dad of a child with MGD and his experiences, I also linked to an article by a urologist who works with patients with CAH. It’s really CAH that I want to concentrate on here, although I will touch on one or two other things as we go.

As I’ve explained in the past, there is a form of CAH which can be fatal if left untreated, so when a child is born with ambiguous genitalia, this is the first diagnosis that will be checked for. Once this is diagnosed, and appropriate treatment started, then there are the decisions about surgery. Ambiguous genitalia in females can pose problems for urination and menstruation, so functionality is the first question, not just in the immediate sense, but also future functionality. I can already hear now “but the child can decide later in life”. Yes, they can, but I refer you back to the lucky thumb, did you feel the same about that when we talked about it sometimes being better to perform surgeries at younger ages, or was your feeling more neutral? Why is it different here? Would it make a difference to you to know that the overwhelming majority of CAH women favour surgery at as early an age as possible? In fact, regret about infant surgery is incredibly rare among this demographic and where they do exist, it tends to be because of archaic techniques that are no longer used.

Or, let’s take another, popular queer theory objection, “but, Claire, it’s so heteronormative”. To be honest, I only have one response to that…so what? What’s wrong with being heteronormative? And, to be frank, I don’t really understand why it is “heteronormative”. Are queer activists not aware that gay women urinate and menstruate conventionally, and many are mums too. Are they being heteronormative? Why is it a problem for you that intersex people might also like typically functioning bodies?

I sometimes see, not unusually for queer activists, a stat being misused to justify them denying the right of CAH women to female body experiences. They will tell you 1 in 10 CAH women develop gender dysphoria later in life. What they fail to tell you is that there is some suggestion that this may be down to a lack of medical interventions. Assuming we don’t want people to feel dysphoric, before someone asks me what’s wrong with being trans, why would we not take steps to help to avoid this additional psychological issue? What they also don’t tell you is that rates of GD are higher in females with CAH who are raised boys. So much so, that there actually is an overwhelming consensus that female is the right sex of rearing for CAH girls. You can click on any of the links I’ve provided to check this.

I want to be clear, I’m not talking about clitorectomy (the complete removal of the clitoris). On any other girl, this would be considered FGM, intersex girls should have the same protections. Neither am I talking about the abhorrent practice of surgical sex assignment, among other DSDs, which involves removing boys’ penises, for being in someway not adequate, lying to them and rearing them as girls – I think we can all agree this is wrong and should be stopped. I’m specifically discussing surgeries that improve the lives of women with CAH. This is not something, if you don’t have CAH, you’ve probably really thought about. I hadn’t until I started researching it. With that in mind, I’d ask you listen to the short, but very informative and impassioned evidence, given by the second women in the video clip in this article. I’d also invite you to read this illuminating piece about the law in California, where intersex protocols are being written into law by woke activists, not the actual intersex people themselves, nor the experts who work with them. I can’t stress this enough, trans activism is directly harming the healthcare of these women.

This is where I’m gonna get onto that thing that I wasn’t sure if I was gonna get onto. Feminism is really letting intersex women down here. Even if you’re sadly of the sort who would exclude 46XY DSD women, CAH women have your XX chromosomes, and I’ve yet to see any feminist site or publication come even close to addressing this issue, let alone really acknowledge what is happening to a vulnerable group of women who are currently everyone’s political football. In fact, when talking about women’s reproductive healthcare needs, intersex women are often excluded from feminist discussion, but that’s a rant for another day.

Yes, it’s terrible that men are claiming to be lesbians and are creating a culture where lesbians don’t feel safe expressing their sexuality. Yes, it’s awful that all women are being forced to redefine ourselves by regressive stereotypes and accept male bodied people into our spaces. But we are talking about these women’s right to have a female, functioning body. Their actual physical and mental health. They are being spoken over by aggressive, dysphoric males and adults who are unhappy with their own lot in life. Their health and the health of all future girls born with CAH will be significantly impacted if feminists and other GC people don’t start hearing this and talking about it too.

In my dream world, intersex infants and their parents would have the same experience as my cousin, her son and the lucky thumb. They would be allowed to ponder the evidence and advice of experts. They would be able to do this in an environment where their unique healthcare decisions aren’t considered the political property of others. They would be supported by the people around them and their needs and thoughts respected. DSD diagnosis and treatment is varied and complex, there is not a one size fits all answer to questions about surgeries and interventions. People trying to reduce us to such a simplistic worldview are not allies, neither are those who stay silent. Please share the stories of these CAH women and please stop sloganeering intersex people and our healthcare. We deserve and need better than that.

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8 Comments

  1. Thank you, as always, for your well-researched, thoughtful piece. Are there any DSD advocacy groups in the UK who might be called on to provide a more informed and authoritative steer than the existing LGBT groups to employers and policy makers?

    1. Dsdfamilies are the only UK org who represent actual intersex people, rather than promoting queer theory. They mainly focus on children and their families. A few of us are talking about trying to start something familiar for adults with DSDs, but we obviously all have other jobs too. Funding for non-queer theory intersex orgs and advocacy is really hard to come by. Dsdfamilies have an issue with this too. Their website is https://www.dsdfamilies.org/ if you’d like to find out more about what they do.

      1. Thanks, that’s really helpful. Regarding the org for adults, I’d be delighted to help with start-up costs, or even a spot of fundraising (and I’m sure I’m not the only one). Feel free to hold me to that as and when.

        1. That’s brilliant to hear. Thank you! I do greatly appreciate people who put in the time and effort to support us. Will continue in my talks with the other DSD adults and keep you all posted. 💜

  2. Thank you Claire, as a lifelong feminist and a parent this is something I’m only just getting my head around. I was not aware of the way CAH babies are treated although I have a friend in her 50’s with CAH, her story was very different and equally shocking.
    One thing I have learned from my friend was that she brought up to ashamed of her body and to keep her differences secret, even from her best friends. This secrecy means that for parents to be the birth of a child with a condition like CAH will be even more of a shock than the birth of a child with a condition like your cousin’s child.
    So thank you again Claire for speaking out, the more this information is in the public domain the better the decisions parents will; be able to make.

  3. It seems like it could be so simple. Resolve medical issues using medical advice and fix the body to the optimum extent, not society. Resolve social issues by fixing society, not the body.

    But noooo. That would be no fun. And all those poor, out of work queer theorists. Will no one think of the queer theorists?

  4. As a man with Tourette’s syndrome, I can deeply relate to your (and other DSD persons’) efforts to live a mundane and fulfilled life in the body you were given and your wish to have this struggle seen for what it is, i e not as a freaky show protest against normality. We’ll leave my story for another day. Yours, and all you have learned, is told with so much bravery, honesty and clarity. Keep up.

    1. Thank you. I really appreciate this comment. I can totally understand why you would feel this way too. I’ve worked with a couple of young people with Tourette’s and I know they could be incredibly frustrated by it at times. I’d love to hear your story. It’s always good to learn from others about their experiences.

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