Tuesday, March 13, 2012

How Common is Intersex Status?

If you poke around the internet trying to find out how common it is for a person to be intersex, you may well wind up frustrated that nobody seems to have a precise figure to give you. You'll probably encounter some commonly-cited odds: 1 in 2000, or 1 in 2500. People have passed these figures around for a number of years, until, by repetition, they've come to seem generally accepted. I used to repeat these figures myself, before I learned more about how they were generated. Being born intersex is presented as rare; less common, say, than being born with Down's syndrome.

These estimates are off by more than a factor of 10.

A true, conservative estimate is that more than 1 in 150 people are born with intersex bodies. In this post, I'm going to explain why the true commonplace of intersexuality is so widely underestimated. And yes, I'll justify my 1 in 150 estimate by the end.

There are two main reasons reasons why nobody can give you an exact figure for how many people are intersex. The first is that there is nobody gathering this data. And the second is that in trying to come up with an estimate, people rely on medical diagnostic categories that purposefully deny that many people with sexually-intermediate bodies are “really intersex.”

Let's begin with the matter of gathering data on who is intersex. A central problem we run into is that nobody is funding a cross-condition population study of sex variance. This is the case in part, ironically, because being intersex is perceived as a rare thing. In addition, being intersex is framed as a “treatable medical condition.” Thus, there's little sense of intersexuality being an urgent matter to prompt government or private entities to fund a large exploratory study. But even if a large study of all physical sex variance were to be funded, you'd run into problems with people not wanting to disclose their bodily statuses. Some intersex conditions are obvious at birth when children have visible genital variance. But these children are immediately assigned a dyadic sex, male or female, on their birth certificates. The children and their parents are told by doctors that they must conceal the childrens' “defect.” With both the medical profession and our society at large treating intersex status as something freakish and shameful, people who are born visibly intersex are usually extremely closeted about their status, and don't want to be studied, outed, exposed. They are unlikely to want to take part in studies.

Furthermore, many people are intersex without it being genitally obvious. Some people are chromosomally sex-variant: they have a genotype such as XYY or XXY that is not associated with a significant disability, or they are XY women or XX men. Such people may never find out that they are intersex—after all, have you ever had your sex chromosomes screened? Other people have variant internal reproductive organs. I, for example, had an ovotestis, a gonad intermediate between an ovary and a testis. I'd been told I had a supernumerary ovary after pelvic exploratory surgery, and it was only years later, after I'd had my internal reproductive organs removed, that a pathologist informed me it was actually an ovotestis. What this illustrates is that in order to do a mass study of the frequency of intersexuality, you can't just rely on interviews and on existing medical records. One would have to do extensive medical testing, including biopsies, of all the people studied, which would be very invasive.

Even if you were somehow able to get a large, representative, random subpopulation of people to agree to be genitally examined, hormone-screened, genotyped, CAT-scanned, and to have their gonads biopsied, the frequency of intersexuality would be drastically underestimated. And that is because of the second problem I mentioned: that of medical diagnostic categories.

Let's think commonsensically and rationally for a moment.

What does it mean to be intersex? Logically, it means that a person has a body that is intermediate between the idealized male and female poles of the sex spectrum. All of us start out in the womb with an intersex form, having a phalloclitoris, labioscrotum, and ovotestes (you can read more about this in this post). It's expected that these should differentiate as we develop, but in fact one or more elements of the sexual anatomy may stay fully intermediate, or may differentiate only partially. Any person who has a body that is not fully sex-differentiated is, logically speaking, intersex.

But medical diagnostic categories are not logical, despite our ideology that they should be so. The majority of individuals born with intermediate sexual anatomies are not given an intersex diagnosis. I believe that what underlies this is gender ideology. And that gender ideology is this: masculinity is fragile, especially when it comes to what a man has in his pants. To live as a man with an inadequate penis is seen as intolerable. To have one's status as a “real man” challenged is viewed as psychologically crushing. Thus, doctors feel, if they were to categorize someone as intersex and then assign them male, they would be acting cruelly. Women, on the other hand, are perceived as more gender-flexible. After all, it's reasoned, a woman isn't shamed by wearing pants or taking on a power career. Viewing female-assigned people as more comfortable with androgyny and as better at dealing with emotional challenges, doctors believe that if they diagnose someone as intersex, they should assign them to the female category.

Thus, under current the current regime of medical diagnosis and treatment, the large majority of people labeled by doctors as intersex are assigned female at birth. People who are diagnosed under the rubric of “female pseudohermaphrodites" (a ridiculous term devised in the 19th century for intersex people with ovaries and intermediate genitalia or a phallus) are assigned female, and their phalli are surgically removed. People who are diagnosed under the rubric of “male pseudohermaphrodites,” with internal testes and genitals that are intermediate or vulvic, are also assigned female, and their testes removed.

Under this regime, most people—including academic gender scholars, doctors, and even a substantial number of intersex activists—believe that “almost all intersex people are assigned female at birth.”

You'll find this statement oft-repeated, but it's not true. At least as many babies with sex-variant bodies are assigned male at birth. It's just that the majority of them are not diagnosed as “true hermaphrodites” or “pseudohermaphrodites.” Many, for example, are characterized as “real boys” with a "urethral malformation." The diagnosis they receive is “hypospadias.”

Hypospadias occurs when a person develops testes, but the phalloclitoris is intermediate in form. People with hypospadias can fall anywhere on the sex spectrum from having fully intermediate genital configurations to having forms little different from what is considered typically male. (You can find illustrations midway down the page here.) In cases of what is termed “first degree hypospadias,” the person has close to idealized male anatomy, but the urethra opens on the underside of the penile glans. As the degree of hypospadias increases, the opening is lower on the phallic shaft, and is larger and more vulvic in form. In perineal hypospadias, there is a substantial vagina, the phalloclitoris is intermediate in structure, and the testes may be internal. And the bodily variance is not limited to the external genitalia. Hypospadias is associated with an enlarged prostatic utricle, which may vary from a slight enlargement with low degree hypospadias, to a full-sized uterus in high degree hypospadias.

Rationally speaking, people with hypospadias are intersex. They share with other intersex people not only sex-variant anatomy, but the common experience of imposed genital-normalizing surgery in childhood, and the unwanted consequences of loss of sensation, infections, scarring and fistulae. And while individuals with mild hypospadias appear to be almost as likely to identify with their assigned sex as individuals with typical phalli, those with advanced degrees of hypospadias are much more likely to suffer from gender dysphoria with their male assignment. For medicine not to acknowledge that hypospadias is an intersex condition seems not only nonsensical, but often cruel. It may be true that people born with hypospadias who identify as male don't want to be publicly labeled intersex, just as male-identified people don't often buy T-shirts that say “Ask me about my erectile dysfunction!” or “Just call me Cocktail Wiener.” But our cultural obsession with male-classified people having large erections and unquestionable male status should not dictate medical diagnostic categories.

Now, here comes the kicker.

According to the CDC, hypospadias occurs in the U.S. in one in 125 children labeled as “boys,” or 1 in 250 births. In other words, if we looked only at this one condition, the minimum rate of intersexuality is 1 in 250.

There are other intersex conditions that are not diagnosed as such, though they are medically treated in the same way as other intersex conditions. Consider “clitoromegaly” and “micropenis,” the diagnostic terms for people with a clitorophallus of intermediate size. A child born with clitoromegaly is assigned to the female category, and today in the U.S. is given “clitoral reduction” surgery in the same way that a child diagnosed as a “female pseudohermaphrodite” is altered. Children born with micropenis in the U.S. are classified as boys, and must often endure surgical and hormonal interventions (sometimes even what is officially termed infant sex reassignment to female status). Yet individuals with clitoromegaly and micropenis are often not diagnosed as “offically intersex.”

So let us just look at individuals born with genitally intermediate bodies who are assigned male at birth. Micropenis occurs in 0.6% of male-classified people, or 0.3% of the population. Hypospadias occurs in 0.8% of male-classified people, or 0.4% of the population. Just looking at these two conditions, 0.7% of the population is born sex-variant. In other words, translating to odds, 1 in 142 people has either hypospadias or micropenis. That's more than 1 in 150.

We now see what happens when we employ the rational rule of classifying anyone who is genitally, gonadally or chromosomally intermediate as intersex. We logically include people with hypospadias and micropenis in the intersex category instead of excluding all conditions in which infants are assigned male. Now, for the sake of argument, let's just accept at face value the assertion that all other intersex statuses are so rare that the chances of having any other variation in gonads, genitals or chromosomes is 1 in 2500. I consider this extremely unlikely, but we'll just go with it. In fact, for the sake of our argument let's accept the ridiculous assertion a medical student once made to me: that there have only been 7 “real hermaphrodites” ever encountered in all of recorded medical history. By this logic, the chance of having any other intersex variation is 1 in a billion, or to simplify, basically 0. But we're still left with a minimum of 1 in 142 individuals having an intersex body.

That puts being intersex about on par with the likelihood of having green eyes.

Personally, I believe the rate is much higher. I do think it's unlikely we'll ever come up with an unquestionable exact number of intersex people, even if we get study funding and widespread permission from study populations, and even if medical diagnostic categories cease to be so irrational. Sex is a spectrum, and any way we slice up a spectrum is arbitrary and open to debate. (I remember my mother and grandmother perpetually arguing over whether the color turquoise was “really blue” or “really green,” and one could have similar endless arguments over the point at which an intermediate phalloclitoris is sufficently large-headed to “count” as a penis or sufficiently small-headed to “count” as a clitoris.) But at a very conservative minimum, more than 1 in 150 people have sexually intermediate bodies.

So the next time someone tells you that intersexuality is extremely rare, tell them otherwise. The next time you see a book about pregnancy that talks about uncommon complications and rare infant differences but never mentions how often babies are born intersex, raise a fuss. If you hear the old saw that “all intersex people are assigned female at birth,” clear up that misunderstanding. Be aware and help make others aware that the problems facing intersex people are not sad rarities, but burdens faced by many (over 2 million in the U.S. alone). And if you yourself are intersex and living a life in closeted shame, I urge you to stop believing you must live your life isolated and alone. You have a lot of siblings out there.

18 comments:

  1. If we include another internal displacement ,the transex.In that the brain (which is proven to be structured cross sexed)is more properly the primary marker,it raises that number even higher. Being transex I too have been calling for a complete mapping of the genome,to prove my own biological causation. Perhaps the condition of transex and intersex variation have more in common than is given credit? Without being able to afford such sequencing,and dismissing surgical or hormonal intervention; my bone structure itself seems female even though I would be classified as male based on genitalia(as far as i know).That index finger trick used to spot "trans" doesnt apply.I sit in a W fashion guys cant.My feet are small relative to size compared against males,and my toes are cute,lol.Just food for thought, I would like to see an orgnization started with intentions of full genome sequencing of all intersex, transex, and transgender people.

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    1. jayla, I am both intersex and trans. They are not the same thing. Being trans does not make one intersex, and is not an "intersex condition" as is often claimed by biological-essentialist, conservative trans people (or a "condition" at all, although being trans in the world can involve a great deal of suffering). There is no such thing as a "female bone structure" or "male foot size." Bodies do not have genders, only variations in morphology - and citing brain research done by cisgender doctors which claims to "prove" the existence of "cross-sexed brains" is useless and pointless, because that research rests on fucked up, transphobic, gender-binarist, neurotypicalist and interphobic assumptions about gender, brains and bodies.
      Non-intersex trans people appropriating intersex to explain their existence doesn't help anyone - not trans people (it's a biological-essentialist, assimilationist position), CERTAINLY not intersex people (it's appropriative as fuck), and least of all people like me who are both, and get caught in the crossfire.

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  2. Considering late-onset intersex conditions, hormonal conditions, and conditions like aphallia and vaginal agenesis the number was estimated to be closer to 1 in 70. I have atypical tetragametic chimerism with ovotestes.

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  3. I have been using 1:500 to 1:25 when I get interviewed. 1:150 seems to fall nicely in between there. One of the goals I'm trying to accomplish with my campaigning is exactly to make people aware of how many intersex people there are. It isn't rare at all.

    Things like transsexuality are the real rarities, once you cut out the part which get called transsexual but are actually intersex individuals, many of whom got genitally mutilated as a child or infant.

    As for myself, it got quite clear during puberty that I am intersex, with both male and female secondary characteristics appearing. Turns out that I'm likely an XX/XY hermaphrodite. See my site www.mayaposch.com for my story and my campaigning details/education attempts and blog.

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    1. Being trans is really NOT that rare, even excluding intersex trans people. I think it's another thing that really gets downplayed and made to seem super rare, when it's not at all.

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    2. If trans* identity is rare, then my beautiful city of Asheville, NC must be positively brimming with unicorns. You can't throw an FTM without hitting a genderqueer, the local charity medical facility provides hormone therapy, and there's this one DJ who can fill an entire club with trans*folk. I dare anyone to attempt to scientifically quantify what's going on with us, too. =)

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  4. Awesome post. When I read "I'll show you it's really 1 in 150" I thought "oh great, here come boring statistics" but you actually lay out, very simply, why that number makes sense. Indeed, even 1 in 70 would make sense, and 1 in 150 seems conservative given the comment above about adult-discovery of intersex status, since you only analyzed at-birth statistics.

    As always, I look forward to these posts and come away feeling like I learned a WHOLE LOT in just a few paragraphs. So thanks for breaking it down and making this information accessible.

    ~maddox

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  5. I have learned a lot from your site, things I never imagined. Thanks for the education, and best wishes.

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  6. I'm pretty sure intersex and transsex are two manifestations of the same underlying phenomenon, i.e. a disruption to the hormonal environment in the womb. Physical intersexing occurs when the disruption occurs during the first trimester, the time when all the developmental events that give rise to the genitals and reproductive organs are taking place. Gender dysphoria and transgenderism occur when the disruption takes place during the second and/or third trimester, when the "axonal growth" phase of brain development is taking place (the brain is being wired up with its permanent structure).
    As to what causes these hormone disruptions, there are the known genetic conditions associated with intersexing, but a lot of the time I think it's actually doctor-prescribed medicines that are responsible! For decades, doctors have routinely been giving pregnant women eyewateringly large doses of hormonal medication in order to reduce the risk of miscarriage or premature birth. It started with a drug called DES (which was pulled from the market in 1971), but the practice has continued using a class of drugs called progestins, which I think are producing much the same effect.
    I think there are actually two ways in which these medicines can affect sexual development: through chemical castration in the genetically male (XY) unborn child, and through progestin- or steroid-induced virilization in the genetically female (XX) unborn child. Chemical castration interrupts the production of testosterone and causes development to occur as female instead of male, whereas virilizing hormones such as certain progestins or steroids mimic the action of testosterone sufficiently well to drive development out of the female pathway into the male one. Either way, what you get is a person who was developing as their genetic sex up until the point the medication started being given to the mother, at which point they switch to developing as the opposite sex instead.
    There are probably quite a few people still alive with physical intersexing as a result of exposure to DES, but in the early 1970s DES was banned and restrictions were brought in preventing the use of hormonal medication on expectant mothers during the first 4 months of the pregnancy. That has probably largely put a stop to medically induced physical intersexing, but of course has done nothing to prevent people being born with brains that are partially those of the opposite sex. Judging by my experiences and those of a group of "DES sons" I've been chatting with online, one of the ways that can manifest itself is through transgenderism, but I think more commonly the result will just be a very unhappy, confused person. These medicines are in widespread use and the total number of people affected must be well into the millions.

    Hugh

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  7. This is such an interesting post, and blog. Thank you for providing this information. It is incredibly difficult to find reasoned, clear and comprehensible information.

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  8. I think your estimates are way off base. You're re-assigning most persons you claim as intersex, their true sex.

    When I was born I was assigned male, I like that assignment. I have a male gender identity too and who I have sex with is none of anybody's business, but mine and the person(s) I have sex with. That at 17 I was found to be XXY sex chromosomes did not in any way alter my perception of myself, I was still male, and will always be male.

    Unfortunately most of those who are XXY and think they're intersex do so by way of very poor understanding of genetics. Most people only have a high school education when it comes to genetics, well maybe not even that?

    I think I'm much more qualified than you to tell you what my sex is, and you have no right at all to tell me my sex. In reality chromosomes house genes and one of my genes is called SRY, and it's turned on, I'm SRY+ which makes me genetically male.

    In fact, every XXY guys I've ever met has been SRY+ and all those on the internet who think they're intersex are also SRY+. So intersex, being or not, is more down to education and opinion, not hard and fast facts. The number of persons intersex is variable.

    Graeme
    XXY
    Male.

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  9. I've struggled with whether I "count" as intersex or not ever since I first learned about hypospadias. I was born with the first-degree variety, and no surgery was performed AFAIK, so it was a relatively minor case.

    However, it wasn't a non-issue either. I didn't know what hypospadias was as a child and felt like a deformed freak. I am also trans which complicated things further. These days I just avoid the issue because when I bring it up a lot of people think I'm faking it to get attention, or say I'm yet another trans person trying to appropriate intersexuality.

    I don't know how to feel or what to think about the situation. It's important to me because it impacted my childhood deeply, but by the same token I don't want to appropriate or butt in where I don't belong.

    Thank you for this informative post.

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  10. I would really hope to find out I am intersex,I have a few conditions, and honestly feel female even though I was born a male. The problems that I have are multiple and I am uncomfortable with who I am as a male, I do have breasts, they are nice but not on a guy and do not conform with the rest of my body, I live in ohio and would like to undergo testing to see if I am intersex, also I have micropenis, so it is really diffucult for me to view myself even at a very early age as male. Because of how I was raised and how my parents are even if I am not intersex I would still want to be female. I know I won't have the support of my family , to me that doesn't matter as I want to be who I really am and waking up everyday to see myself as a male is really depressing I have kept this a secret ever since I was five years old, and I am still terrified of the critcism I will receive if I come out in the open, please someone help me, how would I find out and could someone give info on this post?
    thank you and god bless ;)

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    1. There is encouragement for your life in the biblical comment that in the kingdom of God there is neither male nor female (Galations 3:28), meaning that if you trust in Jesus it ultimately will not matter. That does not mean you will not have difficulty in this life, struggling with being physically different from most people. Seek God's help so as to be useful to Him anyway, like Paul did with his 'thorn in the flesh': he asked God to remove it, but God's reply was 'My grace is sufficient for you: for my strength is made perfect in weakness'- 2 Corinthians 12:9.

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    2. Anon, Dec. 22, what you're describing sounds very much like the symptoms DES sons seem to commonly experience (particularly if you were born with undescended testicles as well!). If you were born 1971 or earlier then DES is very likely to be the explanation for your problems. For over 30 years it was widely used as a treatment to prevent miscarriagse, and several million unborn baby boys in total were exposed to it.

      Our sex determining chromosome (the Y chromosome) is far smaller than any of our other chromosomaes and only has a few dozen functional genes on it. Basically all it does is tell your undifferentiated gonads to turn into testicles (without it they'll turn into ovaries). All the instructions for both male and female development are held elsewhere in your genome, so everyone has the full set of instructions for both sexes.
      Something has to tell your body which set of instructions to follow, and that something is testosterone. By default you develop as female, but if there's testosterone present you develop as male instead.

      Ordinarily this system works quite well and you'll develop as one sex throughout the pregnancy (which one depending on whether you have testicles churning out testosterone or not). However, problems occur when you administer drugs (such as DES) during pregnancy that block testosterone production - they can cause a male fetus to start following the wrong set of instructions partway through, so that he develops as male to start with, but then starts developing as female once the drug is being administered. DES was definitely being given in doses high enough to produce this effect. Just 3mg per day will completely suppress testosterone production in an adult man with prostate cancer, whereas the starting dose for miscarriage treatment was 5mg per day.

      Your genitals and physical sex develop during the first trimester of the pregnancy, whereas the remaining two trimesters are when your "brain sex" develops. With these miscarriage treatments, most of the exposure tends to take place after the first trimester, with the result that you end up with a relatively normal-looking male baby with a female brain. That's the theory, and based on what I've seen with the DES sons, that's exactly what seems to happen in real life too.

      With DES, the treatment seems to have often been started early enough to affect genital development as well as brain development. Current miscarriage treatments tend to be started a bit later in the pregnancy so are much less likely to cause genital abnormalities. Going on the number of younger MTF transsexuals around, I think some at least must still producing baby boys with female brains though! There's one in particular called Proluton Depot, which certainly looks like it's being given in a high enough dose to cause problems.

      Unfortunately the DES sons support group I was participating in last year is currently out of action. There's a facebook group, https://www.facebook.com/DESInfo
      which although it's run by DES daughters, has got some DES sons who are members too. If you look back through the timeline, there's several stories from DES sons posted during June (plus there's a couple in the Notes section too). I don't know for sure whether it's the cause of your problems, but as you can see from those stories, your experiences are fairly typical of what happens to DES sons!

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  11. It would be cool if a trans-positive intersex activist such as yourself would talk about how we tend to read biological sex as a *combination* of genitalia and other secondary-sex characteristics. If a female-genitaled, XX person happens to be very tall and has a rather low voice, or if a male-genitaled, XY person happens to be fine-boned and have very little facial hair, those people aren't considered intersex. But their self-perception and social perception are influenced by social perceptions of biological sex, and they probably have had to contend with whether they think of their own bodies as in-between. We are inconsistent and undecided about whether sex is genital, chromosomal, hormonal, or some combination of these. I personally grew up with an androgynous-looking body (no curves, tall, broad-shouldered) that was definitely classified as "female," but I am trans. I don't feel that I am trans because of my body, but my experience of my body has informed my experience of my gender. I don't believe in searching for biological (and certainly not neurological) reasons/excuses for being trans, because politics. And because gender is social and sex is physical, however we *socially* interpret bodies and classify them into biological sex. This is a vague and messy process, and it leaves a lot of bodies out, not just ones with inter-sex organs or chromosomes or even hormone levels. Expanding our concept of the sex spectrum to include people with androgynous bodies who have dyadic genitalia and chromosomes would do a lot of work for both intersex and gender politics.

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  12. I really enjoyed reading this but you don't seem to link to any scientific publications to back up your claims...

    Personally I work in the medical sciences, am trans and had something like what you described in your article. I kept the whole thing hidden as I was ashamed and terrified people would find out, etc and I didn't want to be seen as a wannabe etc plus at the time I didn't figure it was a big deal anyway.

    Growing up I showered separately, had to use the cubicles, etc and then found out (before hrt) that I was sterile which was very upsetting in itself. Since then its been a can of worms and I have found out that my parents have been "lying" to me about surgeries performed on me as a baby and that they weren't sure of my gender when I was born.

    All of the doctors I spoke to class the whole thing as a "birth defect" not intersex, even medical papers avoid the term and rationally as a scientist I too cannot see how what you have described, cannot be classed as intersex (albeit a mild form).

    This whole thing has left me feeling angry, confused, betrayed, mutilated and worried about what else is going on. I'm currently trying to get my medical records, have my chromosomes, checked, etc

    IF this is intersex, I would rather not be.

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  13. They have done it again - the BBC is stating one in 2,000 rather than one in 100 or one in 150 on the article about the third gender in Germany.

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