Thursday, April 10, 2014
This is just crazy. Some facts: first, levels of testosterone vary a lot. Tests of elite athletes show that about 17% of male athletes have testosterone in the "female range" and 14% of female athletes have testosterone in the "male range." Secondly, there is no direct correlation between levels of T and athletic performance; that's simplistic and nearly magical thinking. And third, it makes no sense to define the range of "normal" T levels for women very narrowly (15 - 70 ng/dL) and for men very broadly (300 -1,000 ng/dL), in essence saying that there's no such thing as a natural level of testosterone too high in a man, but there is such a thing for a woman.
Bodies vary a great deal. Why do we focus obsessively on policing the sexed body of athletes, rather than on other "abnormalities?" Basketball players are abnormally tall, which actually does enhance their performance. Many gymnasts are double-jointed and abnormally flexible. In fact, most any sport rewards people with atypical bodies, and we *celebrate* that. But when it comes to sex variance, a variation that is associated with high performance more in fantasy than in fact is suddenly subject to extreme bodily policing, and that's just wrong.
Saturday, December 21, 2013
The likelihood that some of these mothers had in fact had classical penile-vaginal intercourse, but didn't wish to report it, is indicated by the fact that these self-proclaimed virgin mothers were twice as likely to have taken an abstinence pledge than were other mothers.
But others of these virgin mothers were likely telling the technical truth: that they had not yet engaged in penetrative intercourse when they became pregnant. Sperm, you see, swim, and if they are deposited on the exterior of a person's body, they can make their way inward all by themselves. Thus, pregnancies regularly result from "outercourse."
As an intersex person, I think about this a lot, because doctors often claim that genital surgery is not cosmetic but functional, as without an "adequate" vagina or "repaired" penis, we will be infertile. To which my sophisticated academic rebuttal is: nuh uh! You need the right hormonal balance to go with the gametes, and some way in or out, but it certainly doesn't need to be a vagina that can "accept" a penis, or a phallus that is large and has the urethral opening at the tip.
Wednesday, February 20, 2013
In the U.S. today, according to the CDC, one in 125 children assigned male at birth is surgically modified to fit that binary sex status. The percentage of children assigned female at birth who are genitally altered in infancy to feminize their genitalia seems to be lower. Exactly how much lower is very difficult to determine, since nobody is gathering the data we'd need to have. The reason we know the 1-in-125 figure is because these children assigned male are all given the same diagnosis: hypospadias. Hypospadias is the diagnosis given to most children born with intermediate genitalia who have external testes. Rates of hypospadias have been increasing, and the CDC is collecting data due to concern about that.
The reason people continue to say that few intersex individuals are assigned male is that doctors term hypospadias a "penile malformation" rather than an "intersex condition."
I've written about this before in this post. I noted there, "medical diagnostic categories are not logical, despite our ideology that they should be so. The majority of individuals born with intermediate sexual anatomies [and surgically assigned male] 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. [Doctors view] female-assigned people as more comfortable with androgyny and as better at dealing with emotional challenges." Because of assumptions about fragile masculinity and flexible femininity, doctors feel more at ease assigning children they designate as intersex female. Those they regularly surgically alter to conform to binary male sex norms, they wish not to label intersex.
I was contacted by some people after writing that prior post challenging my assertion that hypospadias is an intersex condition. They countered that it was simply a minor displacement of the male urethra. So I wanted to make my case more clearly.
Let's start with some illustrations.
All children start out in the womb with the same set of genitals, an intersex form. As a rule I will not post photos of children's actual genitalia because it is exploitative, but in this case, I feel a medical image of the standard genital form of a fetus isn't going to cause additional emotional trauma to any particular child, so here's a photo:
Our society expects this intermediate genital form to differentiate before birth into two "opposite" binary sex forms (penis and testes, or vulva), but in fact, babies are born with genitals on a full spectrum between these two socially idealized poles. Let's look at how medical professionals illustrate this sex spectrum.
When a child is diagnosed as having some form of XX, CAH, congenital adrenal hyperplasia, the sex spectrum is described by the "Prader scale," and the "stages" of the "condition" evaluated using this chart:
When a child with XY chromomes is diagnosed as having a form of AIS--partial or complete Androgen Insensitivity Syndrome--the sex spectrum is termed the "Quigley scale," and is illustrated like this:
You can see that both of these illustrations include 6 forms, although they number them in reverse order and with different numerals. What they both show is that between a genital form considered typically female and one considered typically male, there is a common spectrum of intermediate forms.
This is equally true for children who are diagnosed as having hypospadias. But medical illustrations of hypospadias are very different. They do not picture the genitals as intermediate in form.
Instead of picturing the same range of in-between forms shown in the Prader and Quigley scales, medical illustrations of hypospadias variations show something odd: a carefully illustrated "normal penis" with a series of dots superimposed upon it to indicate the level at which the urinal meatus/ vaginal opening are located.
The penis is always illustrated as erect, and often with a lot of illustrative detail to emphasize the "reality" of this imaginary ideal penis existing instead of the intermediate genitals actually present in intersex individuals who have external testes.
Let us be clear here. A child diagnosed with hypospadias of an "advanced degree," be it termed perineal or posterior or scrotal, will have an intermediate phalloclitoral form with a substantial invagination, not a large, erect phallus with a dot at the bottom. They'll look more like the Prader 2 or Quigley 4. I'd illustrate such a child's genitals more like this:
Why would medical illustrations of intermediate genitalia be representationally accurate in the case of intersex children diagnosed under the rubrics of AIS or CAH, but inaccurate if highly detailed in the case of intersex children diagnosed under the rubric of hypospadias? Only gender ideology can explain this. Children diagnosed with CAH and AIS are routinely assigned female. But children with hypospadias are surgically "corrected" to male, and to undermine the "adequacy" of a male's phallus is treated as untenable. Parents (and doctors!) must be reassured by looking at the erect, large, ideal penises drawn in the hypospadias illustrations that the genitally intermediate flesh of the child they see is illusory, and that an excellent penis will soon be revealed by the scalpel.
So: medical illustrations of hypospadias, and the medical assertion that it is not really an intersex condition, relate to our ideologies of masculinity.
The differences in medical approaches to intersex children routinely assigned female and routinely assigned male extend further than illustrations and terminology. They also determine all the tests and evaluations the child will receive. If an intersex child lacks external testes--the determining characteristic of a hypospadias diagnosis--that child is routinely subjected to a battery of tests: genotyping, endocrine screening, medical imaging scans. This is not the case when an intersex child has external testes. In fact, even suggesting that a child with intermediate genitalia but palpable testes receive any sex-related tests at all is considered "controversial" by doctors. Since hypospadias is defined as a penile malformation that is not an intersex condition, why would anyone wish to test sex chromosomes, hormone levels, or internal reproductive structures? It's presented as an unacceptable waste of time and money, in an affronted tone.
In fact, individuals born with hypospadias do commonly have other sex-variant characteristics. An example is the presence of what is termed a substantial "prostatic utricle," a uterine structure that may be small or full-sized that connects to the vaginas present in these children at birth. While the "pseudovaginae" are removed and closed during infant genital "normalizing" surgery, doctors do not test for the presence of a uterine structure. People diagnosed with hypospadias and their doctors generally only become aware that there is a utricle present if something goes wrong, such as the development of uterine cancer or painful cysts--and then usually by accident during imaging scans for some other presumed cause of the patients' symptoms.
I want to note that many intersex people assigned female at birth complain of all the invasive tests and screenings and procedures to which they are subjected in childhood, so the fact that intersex children with hypospadias diagnoses avoid these is not necessarily a bad thing. But not even thinking of checking for a uterine structure in someone born with hypospadias who presents to a doctor with pelvic pain could have very negative health consequences.
It is clear is that intersex children diagnosed with hypospadias are treated very differently than children with other intersex diagnoses. Rather than being treated as bizarre and interesting medical cases that require a lot of medical study and intervention, they are treated as normal boys with a little urethral displacement issue.
The thing that children diagnosed with hypospadias have in common with other intersex children is that they are subjected to genital normalizing surgery that can have many negative consequences. Medical texts list as unwanted consequences of hypospadias "repair" surgery urethral fistulae, strictures, and diverticulae, recurrent urinary infections, "excess skin," hair-bearing skin, persistent chordee, erectile difficulties, erectile persistence, chronic inflammation, and a condition called balanitis xerotica obliterans. Textbooks are oddly silent on the issues of loss of genital sensation that are very common, and the fact that children born with genitals in the middle of the sex spectrum are particularly likely not to identify with the sex they are surgically assigned at birth.
Some children who are diagnosed with hypospadias have genitals that are quite close to the binary male ideal in our culture. For them, medical interventions may be fairly minor, and the side effects may be modest. They are very likely to see themselves as typical males, and are probably unlikely to wish to be identified as intersex because they share our society's pattern of fragile masculinity. I am empathetic with their position. But we should be able to support the gender identities and dignity of people born with hypospadias who identify as men without resorting to inaccurate medical illustrations and illogical medical taxonomies.
Hypospadias is an intersex condition. The surgeries we perform on unconsenting intersex children without their consent have lifelong consequences. These can be profoundly negative for children whose genitals are dramatically altered--something that intersex advocates decry all the time. But we should also question why we routinely risk the loss of sexual sensation in the glans of the male-assigned child whose urethra is in a slightly atypical place.
All of us born intersex deserve to be recognized as such, and to be granted autonomy to make our own decisions about what "normalizing" surgical alterations we wish, if any. Putting an end to the routine genital reconstructive surgery performed on the many thousands of children diagnosed with hypospadias each year should be considered an important point of intersex advocacy.
Wednesday, January 2, 2013
Saturday, July 28, 2012
Sunday, May 6, 2012
Tuesday, March 13, 2012
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.