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I saw a poster yesterday which read "Demedicalise intersex people".
This is a policy demand I simply don't understand. I don't mean I understand what it means, but I think it's unworkable or impractical or self-defeating: I mean I literally do not understand what is being requested. Could anyone enlighten me?
There are a few things I've seen under this slogan:
The Body Integrity and Self-Determination argument is more what you'll see as an outsider.
There are a wide variety of genetic or other medical conditions that, originally falling under a variety of now-disfavored terms like hermaphroditism and now moved to a spectrum of specific diagnosis and weird acronyms like DSD (Differences of Sex Development). Right now, the standard of care in almost all cases (by definition of them being recognized as medical conditions) involves medical intervention toward a more 'normal' presentation: this can be as minor as hormonal supplementation and/or talk therapy, or involve long sequences of pretty invasive surgery. Some of this has medical justification, but a lot of it's operating more under a theory of ability to operate within society.
The motte is where a child is born with ambiguous genitals. Either genetic, congenital hormone exposure, or other causes give something that wouldn't show up in your Human Physiology 101. It's hard to get exact numbers, since this isn't some strict definition sort of thing, but somewhere between 1-in-200 and 1-in-5000 looks plausible. There's actually a really morbid overlap here with the social conservative fear of doctors forcibly transing kids that you absolutely will not see formally spelled out: a lot of the surgical interventions focus on very young children that clearly can't consent, there's a lot of pressure at parents talking up how refusing early intervention doom the kid's chances of romantic or sexual success as an adult, some unknown number of interventions happened without good (or even knowing) consent from the parents, the medical science itself is really lackluster, and there's even a really lackluster underlying set of medical evidence coming from a sketchy-ass doctor. These early interventions were favored because recovery is much harder at later ages, but it's far from clear that the entire class a) actually succeeds or even has a theoretical underpinning for success (eg, the surgical intervention for clitoromegaly is about what you'd expect from the name, and often has to be explicitly excepted from female-genital-mutilation bans), or b) is necessary as compared to better normalization of this variation.
But there's a wide variety of other conditions that only express during puberty (although they can be increasingly detected earlier with genetic testing) or young adulthood. Congenital adrenal hyperplasia (CAH) is the most common, and often what lies behind of 1-in-100 or 1-in-50 estimates for prevalence of intersexuality, followed by sex chromosome atypicalities (such as XXY or X sex chromosomes), and then varieties of Androgen Insensitivity Syndrome (AIS). These have a variety of more or less subtle results, but hormonal intervention is common and surgical intervention (eg, removal of male breasts) is not unusual. Most of these patients can meaningfully consent by traditional definitions (eg, they're at least old enough to talk), but there's a wide variety of interventions that range from 'you will 100% die if you don't do this' (treatments for salf-wasting CAH), 'this can have major negative ramifications for your long-term functioning', and purely aesthetic stuff, and for medical regulatory reasons they're all sold pretty similarly.
((Some jurisdictions also require certain surgical intervention to change registered sex, which can be... messy.))
The argument is that : some of this stuff isn't broken and doesn't need to be fixed. While individual concerns may require a medical framework, treating mere presentation as intersex under a medical framework encourages or mandates interventions that some portion of the targets would not accept otherwise, both through direct pressure and by making any refusers so weird that they must struggle to work within society.
The more internal debate variant is What Is Intersex to even start with.
There's a list of people who are, were, or could have been subject to the various medical interventions listed above. It's (mostly) uncontroversial to call them intersex. That's not too tricky. What about the rest?
There's a wide variety of conditions that are related in a lot of ways, and only really get chased down or result in interventions if someone involved tries really hard. There's a lot of partial CAH or AIS that just shows up as being kinda awkward, or infertile. Do they have to chase them down to count as intersex, even if they have the same underlying physical thing going on?
Does someone stop being intersex if they were born in an environment that didn't care? That happens, both historically (medical interventions for most intersex conditions basically didn't exist pre-1950) and even today (allegedly guevedoces are pretty accepted, though I don't trust a lot of the literature on them). Does the intersex community no longer exist if they achieve their political goals? Do they disappear over a generation?
What about people who are what I've called whiptail- or hyena-nonbinary, who were 'born that way' at most in the sense that they've had an interest in the matter, and sometimes had to put pretty serious effort into becoming that way?
For this question, 'medicalization' is used in the sense of requiring an explicit diagnosis, and often an early or serious one. This is... messy, in both a coalition-building way and in a hard what-do-words-mean one. Note that this can be in direct conflict with the other use of the phrase.
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It is an empirical fact that the list of entities which are admissible into our disease ontology changes over time.
We used to believe in medical conditions like neurasthenia and hysteria, but now we don’t. When presented with the same physical and psychological symptoms, we might just say that it’s part of normal variation, or we might just attribute it to a bad episode, or we could bring the symptoms under the heading of a different disease category altogether - either way, the old categories have been abandoned.
Merely being able to identify a clear biological antecedent to a trait is not sufficient for that trait to be conceived of as a medical condition. It’s reasonable to think that the Big Five personality traits have a substantial basis in genetics, but no one thinks that being extraverted (within reason) is a disease. Extraversion is not medicalized.
The ask is that “I’m intersex” should provoke the same social response as “I’m extraverted” - an “oh, I see” rather than a “wow that’s crazy, what’s that like?” It should be seen as part of normal human variation, rather than conceived of as a wholly distinct category.
Whether this is feasible or desirable is a separate question. But that’s how I understand the request.
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