Showing posts with label genital. Show all posts
Showing posts with label genital. Show all posts

Monday, August 20, 2018

Nonconsensual Intersex Surgery as Physical Conversion Therapy



Today, most people think of conversion therapy as a discredited practice of the past. Back in the bad old days, being "homosexual" was considered a mental disorder that psychologists tried to cure. But being gay was depathologized by the American Psychological Association back in 1972, and today, same-gender couples are socially accepted and have the constitutional right to marry. A small number of evangelical Christian "therapists" still attempt conversion therapy on LGBT people, but they are considered quacks by the medical profession and most of American society. The days of conversion therapy are seen as basically over.

They are not.

I am going to argue to you that "corrective," "normalizing" surgeries performed on intersex children who cannot give or withhold consent are conversion therapies. They are motivated by the same constellation of  ideas that produced conversion therapies aimed at LGBT people. And they take place way more often than most people think. Conversion therapies are alive and well and being imposed every day on unconsenting children in the U.S., harming them.

Mainstream medical practitioners in America today distinguish between LGBT conversion therapies and intersex "corrective" procedures. They frame conversion therapies for sexual or gender identity as wrong because they now agree there is nothing pathological about being queer, trans, or gender-nonconforming. These are minority identities, and trying to "cure" them is akin to doctors attempting to cure people of identifying as Jews or Muslims. It is not the place of the medical profession to impose the majority religious or sexual ideology on patients, and doctors who try to do so are violating professional ethics.

Intersex status, on the other hand, is pathological according to contemporary Western medicine. Physical sex variations are medically classified as "disorders of sexual development." It is the job of doctors to cure disorders. They sat that intersex people are born with tragic malformations, and we will live as social outcasts unless the medical profession heroically steps in to save us by converting our abnormal intersex bodies into endosex-appearing, normal bodies.

A Brief History of Conversion Therapies

The mid-20th century was the heyday of conversion therapies. This was an era of conformity, of faith in medical authority, and of optimism that social ills could be cured by science. It was taken as an article of faith that doctors should seek to convert deviance to normalcy. Funds were directed to developing a wide array of innovative medical interventions toward that end.

A key arena for the development of therapies was producing "normal sex." This midcentury umbrella term encompassed a wide array of matters related to sex, gender and sexuality. The goal was to ensure "natural sex relations." According to the scientific ideology of the time, evolutionary biology required that humans come in two opposite sexes--dominant, competitive men and gentle, nurturant women--who would be drawn by heterosexual attraction to form stable marital units, the necessary basis for parenting. The survival of humanity was believed to require bodies of binary sex, people who conform to binary gender stereotypes, and compulsory heterosexuality.

In the 1950s and 1960s, the medical profession made great investments in developing and institutionalizing conversion therapies, both psychological and physical. These therapies became mainstream and widespread. Doctors aimed to cure "hermaphroditism and pseudohermaphrodism" (i.e. intersex status), "sexual deviance and transvestism" (i.e. LGBT status), and gender nonconformity (under many labels, including "sissy boy syndrome" and  "neurotic penis envy").

The therapies doctors developed were deeply interventionist--often traumatizing and painful. To be converted from deviant to normal was seen as a positive outcome that justified a steep personal price. People with nonconforming sexual orientations, gender identities, and gender expressions were often institutionalized. Some were given electroconvulsive shock treatments. Many were treated with aversion therapies--for example, being given painful shocks, perhaps to their genitals, while being shown same-gender erotica. These "treatments" amounted to torture, and while they could not change people's identities, they could render people incapable of arousal or of sexual relationships. Today, we see such an outcome as tragedy, but at the time, being incapacitated by panic and nausea when triggered by sexual arousal was viewed as better than being able to engage in same-gender sexual relations.

In this same time frame, "corrective" surgeries on intersex children became the norm. The goal of these surgical, hormonal, and other interventions was to produce a person who appeared endosex and was capable of engaging in penetrative penile/vaginal intercourse. Sexual sensation, freedom from pain, and issues of gender identity were dismissed as irrelevant. The goal was to enforce "normal sex" by creating a person who appeared to be of binary sex, was gender-conforming, and who had heterosexual intercourse, whatever the costs. This was very much in line with the painful treatments being imposed on LGBT people at the time.

Prettying Up Conversion Therapies

After the Stonewall uprising in 1969 and the rise of second-wave feminism, conversion therapies came under attack for enforcing compulsory heterosexuality and gender conformity. Lesbian and gay advocates successfully got homosexuality removed from the DSM, the "bible" of psychological diagnoses, in 1972. And supposedly, since then, nonconsensual conversion therapies became a thing of the past.

But in reality, conversion therapies persisted--they just put on an acceptable mask. Homosexuality was no longer classified as a mental illness, but being unhappy about being gay was (this was "ego dystonic homosexuality"). So therapists could still practice conversion therapies on LGB people, so long as they got the patients' consent--or, if they were minors, their parents gave consent and told the therapists their children's "homosexual tendencies" were causing depression.

Meanwhile, mainstream sexual orientation and feminist advocacy organizations of the 1960s-1980s largely ignored or actively opposed trans people's rights. So being trans remained classified as a mental illness, "gender identity disorder." A small number of fortunate trans women and a tiny number of trans men were able to use this diagnosis to access gender transition services during these decades. These individuals had financial resources, bodies that doctors deemed would not be visibly trans after hormonal and surgical treatment, and a demeanor and gestural repertoire that would be gender-conforming after transition, in accordance with the ideology of natural sex/gender binarism doctors were still enforcing. But most trans people were refused access to transition services by medical gatekeepers. Having failed one or more of the enforced gatekeeping criteria, they were instead treated with conversion talk therapies intended to resign them to living in their birth-assigned genders.

As for physical intersex conversion therapies, to the extent they appeared at all on the radar of progressive political activists in the post-Stonewall decades, it was in a positive light. Dr. John Money became something of a celebrity in this period. Money performed intersex "normalizing" surgeries, but became most famous for "treating" one of a pair of identical twin baby boys. This child was the victim of a botched circumcision, in which he lost the head of his penis. Money gave that infant sex reassignment surgery and had the parents raise the child as a girl. In his reports on the case, Money claimed that by enforcing strong gender stereotypes in their parenting, the end result was that the identical twins became a happy girl and a happy boy, both of them gender-conforming. In fact, that was not the case--the surgically reassigned child was never happy, gender transitioned back living as a boy in his teens, and committed suicide in his 20s. But in the 1970s, feminists and progressives saw the case as a cause célèbre, because it was framed as illustrating that gender is socially constructed and not some natural or innate matter.

Money became so famous as a result of this that his paradigm for the treatment of intersex infants became universal in the West. Money held that visibly intersex children should receive genital reconstruction as early in life as possible, so that their parents would raise them as "normal girls and boys," producing well-adjusted heterosexual women and men. So unlike sexual orientation conversion therapies, which had to become much more polite and consensual, intersex conversion therapies actually became more invasive, ubiquitous, and less consensual. 

The Spread of Resistance to Conversion Therapies

In the final years of the 20th century, advocacy movements for sex, gender and sexual minorities pushed back at the persistence of conversion therapies. Sexual orientation advocacy organizations did this overtly. They fought active campaigns against the idea of conversion therapy for LGB people, and in 1987 "ego dystonic homosexuality" was removed from the DSM. Conversion therapy aimed at LGB people was officially disclaimed by the American Psychological Association.

Trans advocates also overtly pushed back at conversion therapies. They focused particularly on the diagnosis of Gender Identity Disorder of Childhood. There being no protocols for social transition for children at the time, children given the "GID of Childhood" diagnosis were all treated with conversion therapies. Some of these children we'd recognize today as trans kids, but often the youths being "treated" had never expressed a trans identity--they were your classic feminine boys and tomboys, or LGB teens whose parents opposed their sexual orientations. Many were institutionalized against their will by their parents. And punitive aversion therapies, often involving physical punishments, were commonplace. The goals of these treatments were to produce complete conformity to the child's assigned binary gender. Trans advocates pushed back against this, and were joined in this instance by LGB and feminist activists.

Trans groups were also engaging in other advocacy efforts that amounted to fighting conversion therapies, but were not framed as such. Trans people were struggling against the gatekeeping by doctors that kept so many trans-identified people from accessing transition therapies. They were pushing for a different pathway to accessing transition services--one now called the "risk reduction approach," in which a patient signs a declaration attesting to their gender identiy and is then allowed to access services after some simple screenings. This advocacy was pushing back at the channeling of a majority of patients wishing to gender transition into cisgender conversion therapies instead of their desired transition treatments. Success in this advocacy let to the bypassing of extensive medical gatekeeping, which in turn led to rapid growth in the number of people accessing transition services. Especially empowered were those who were excluded in the past because they had nonbinary gender identities, would be LGB or gender-nonconforming after transition, and/or would remain visibly transgender after accessing hormones and the surgeries they desired and could afford. For many, conversion talk therapies were replaced with access to transition services.

This pushback against conversion therapies in the 1990s led to the burst of trans visibility in the 21st century. But intersex people still remain largely invisible.

That's because our fight against conversion therapies lags decades behind LGBT battles on these issues. The first major intersex advocacy group wasn't even founded until the 1990s. Having heard no intersex voices of protest, most endosex progressives entered the 21st century thinking of intersexuality as vanishingly rare, and of infant genital reconstruction as some cool proof of the flexibility of gender.

21st Century Intersex Advocacy

Most people today remain unaware of how common intersex status is. I explain its prevalence here: about 1 in 150 Americans is diagnosed with a "disorder of sex development." The fact that people aren't aware of how commonplace intersex status is illustrates the effectiveness of repressive conversion therapies. The very point of intersex surgeries performed in infancy without our consent is to render us invisible. For decades, the treatment paradigm included keeping our medical histories secret from us--lying to us about the nature of our treatments to hide our intersex status even from ourselves. For decades, our parents were told that if anyone learned of our secret, our lives would be ruined, so we must be taught never to talk about our differences. There's been more openness in the last decade--but doctors' diagnostic categories themselves continue to seek to convert us to endosex by concealing the nature of our differences. Rather than being told we are intersex, these diagnostic terms often label us "boys with a penile deformity" or "girls with clitoromegaly." We're told these are embarrassing issues, but ones doctors can cure for us with a few simple surgeries, so nobody will ever know and we'll never have to have the embarrassing problem revealed.

We live in a culture of shame and stigma in which intersex people are still taught that if our variance becomes known, potential friends and mates will be repelled and we will be doomed to lives of isolation. Doctors present us with a solution: physical conversion therapy to erase our physical sex variance, and silence about this ever having occurred. And it works, at least on one level. Few contemporary Americans are aware of how many intersex people are all around them.

But conversion therapies continue to come at a severe cost. For us, these include physical costs: the loss of sexual sensation that accompanies so many infant genital reconstructions; pain; infections. We are forced to show our genitals over and over to strange adults who poke and prod us, and then we are expected not to talk about it, which is a great training regimen to make us vulnerable to sexual abuse. And there's the fundamental issue of agency and self-determination over our physical sex characteristics. For those of us who don't grow up to identify with the binary sex we were coercively assigned at birth, there's the betrayal of knowing our bodies once better matched our identities, but then doctors cut off parts of us with which we identify, and our parents just went along with it. And even if we are in the majority that do grow up to accept our assigned binary sex, all intersex children whose genitals and gonads are surgically altered have endured a forced sex change--something our society would find horrific in endosex children, but accept in our case--and that is very hard to deal with.

And the thing is, conversion therapies never solve the fundamental problem. The problem is that the patient is a member of a stigmatized group. Even if a perfect conversion of a patient to endosex, to cisgender identity, to heterosexuality, or to gender conformity were possible, it only allows that specific patient to escape a social problem that persists. The real solution is to end stigma and discrimination against the minority group, so that every member of the group benefits.

Rather than reducing stigma and discrimination, conversion therapies strengthen them. They naturalize the discrimination and blame the victim.

The young intersex advocacy movement has tried several approaches to addressing the social problems we face. We've formed support groups. We've tried to work with doctors, hoping that if we are polite and educated and assimilated and attractive, they will listen to us and at least delay surgeries to allow children to mature enough express an opinion about whether they want them. The medical profession has been happy to co-opt us and present their uninterrupted intervention practices as having our seal of approval. We've tried confronting doctors individually. They call us atypical malcontents who received outdated surgeries, while they present current surgeries as cutting edge and advanced, with zero data to show any improvement in outcomes. We've tried analogizing infant genital "normalizing" surgeries to the cultural practices Western doctors call "female genital mutilation" and deem barbaric. Both are medically unnecessary cosmetic practices meant to make our bodies appear culturally acceptable to potential mates that traumatize us and deprive us of sensation. This convinced the U.N. to call for an end to unconsented-to medically unnecessary infant genital reconstructions, but basically only tiny Malta banned the practice. In the U.S. and most wealthy industrialized nations, medical interventions continue unabated. Doctors just frame every surgery they do as medically necessary to correct "disorder."

Doctors will only stop performing infant genital reconstructions to enforce their ideology that bodies must conform to binary sex expectations when parents stop consenting to it. In the 21st century we've been trying to educate the population about intersex issues, so parents will cease consenting. But it's been hard to get traction. One problem is that the medicalization of sex variance turns every conversation about intersex issues into a complex story of 17 diagnostic categories, and what each means, and how to evaluate twisted medical claims that surgeries they perform are necessary to enhance fertility (which they mostly reduce) or prevent cancer (which occurs at rates way, way lower than breast cancer--and we don't preemptively remove all breasts like doctors want to remove all internal testes and ovotestes). Medical terminology confuses most average people, and we are trained to defer to medical authority, so listeners often give up trying to process what we are saying.

That's why I suggest we make clear what intersex surgery is. It is a conversion therapy. Doctors say it's necessary to cure disorder and prevent stigma. But they said exactly the same thing about LGBT conversion therapies, until social movements made them relinquish these (lucrative) practices. LGBT conversion therapies were practiced in service to the ideology of "natural sex;" the same is true of intersex physical conversion therapies. But homosexuality is not "unnatural;" same-sex sexuality is found throughout nature. Trans identities are not "unnatural;" gender-crossing is found throughout history. And intersexuality is not "unnatural;" empirically speaking, sex is naturally a spectrum and not a binary.

The public doesn't have to enter a debate about multiple complex medical treatment paradigms any more than the public needed to read psychological journal articles comparing the efficacy of different aversion therapies.

The simple fact is that no person should ever be forced to endure a conversion therapy. No intersex child should be forced to have medical interventions to convert their bodies to appearing endosex. Genital reconstructions should only be performed on mature people who ask for them--whether intersex or endosex, cis or trans.

Having an intermediate phalloclitoris is no more inherently medically dangerous than having a penis or vulva. The danger that comes with having intermediate sex characteristics is purely social and comes from living in a society that discriminates against people whose bodies don't conform to binary sex expectations. The way to protect people from that is to ban the discrimination, not to try to conceal an individual's nonconformity so that that one individual escapes the discrimination.

Stop nonconsensual intersex surgeries. They are conversion therapies, and they are wrong.


 

 

Saturday, September 2, 2017

Conservative Evangelicals Embrace Intersex Genital Mutilation


Something frightening happened this week that may have a profound impact on intersex infants and the intersex community. In the midst of the constant bombardment of news of political and natural disasters that is the state of things in the U.S. today, you may not have even noticed. But you need to know about it. A large group of conservative evangelical Christian leaders signed and released a document they call the "Nashville Statement." To the extent that it got media attention, it has mostly been because it says true Christians must oppose same-gender love and marriage, and refuse to acknowledge gender transition or even that gender identity exists.

But while morally repugnant--including to a huge number of Christians--there's nothing new in that part of the Nashville Statement. We knew conservative evangelical activists oppose LGBT rights. What's new is that this declaration officially puts intersex advocacy in the very same boat. Intersex advocates are sinners now, officially, they say. And this is going to infuse a blast of energy into attacking us politically that our small but growing movement has not experienced before.

So we need to be prepared. We need the help of allies. And we need to understand what this Nashville Statement says.

What is the Nashville Statement?

The Nashville Statement was written by the Council on Biblical Manhood and Womanhood, a group that has been around since the 1980s. Its original focus was on fighting feminism, but it expanded its mission to opposing same-gender marriage, and then to denying recognition of trans identities and gender transition. The Nashville Statement is a manifesto, and the 187 conservative evangelical leaders who initially signed it intend it to serve a number of purposes. One is stop the spread of tolerance in their own followers by declaring acceptance of sex/gender/sexual variance to be a sin in itself. Another is to create a document to use in legal battles seeking to oppose LGBT+ rights by making claims to a "religious freedom" to discriminate. And a third is to try to frame variance in sex, gender, and sexuality for the public as disorder. It is, they say, on one level an issue of physical or mental disorder. But more importantly, they claim, it is evidence of a general social disorder, an international shared sickness, based in rejection of God's order of creation.

It's in this context that the Nashville Statement frames intersex status, calling it a "physical disorder of sex development." And as an intersex advocate, I find this both frightening and fascinating, because it is adopting what we call "DSD" language, and doing this explicitly to attack intersex advocacy.

What is "DSD" Language and Why Does it Matter?

Prior to 2005, the term "intersex" was used by medical practitioners and by people born sex-variant alike. But late in that year, the term "Disorders of Sex Development" or "DSD" burst onto the scene. It came out of a big conference that involved medical professionals and some intersex advocates. The goal of the intersex participants was to stop doctors from rushing to cut up the genitals of babies born sex-variant. And, ironically, it was at the urging of some intersex advocates that one of the things that came out of this big conference at the last moment was the statement that people should stop using the term "intersex," and start using "Disorders of Sex Development" instead.

Those intersex individuals who helped introduce DSD language thought that it would slow down the rush to surgery. Their reasoning was that the term "intersex" evokes sexual perversion, queerness, and radicalism. But "DSD" just sounds like any other medical condition, and so, they hoped, would cease freaking out parents and doctors. Instead of stigma and shame, there would be medical conditions that could be treated calmly, deliberately, and with the minimum intervention necessary. Sex-variant people would be empowered in interactions with medical professionals, and sex-variant advocates seen as reasonable people. Those were good intentions.

But that's not how things worked out.

In fact, what happened is that most out intersex advocates quickly rejected DSD language as repugnant. We didn't see ourselves as "disordered." We saw the problems we faced as socially and medically produced. The forced genital surgeries and other treatments imposed on us without our consent didn't "save" us, they caused us terrible suffering. They constituted intersex genital mutilation. Our problem did not lie in our sex-variant bodies, it lay in a society that framed such bodies as horrifying rather than just an eternal part of natural human diversity.

But you know who loved DSD language, and rushed to embrace it? The medical community, which used it to justify continuing, even intensifying interventions into sex-variant bodies. Disorders, after all, should be cured! Oh, and many parents of intersex kids quickly adopted DSD language, too, after hearing it from doctors, because it supported their desire to have their children "cured" and become "normal." These parents and doctors alike had a shared vision of intersex children being transformed into "regular" girls or boys who would gratefully grow up to be genderconforming and happily, heterosexually, married.

So in 2017 what we find is that in the U.S., we have two competing terms being used to describe those born sex-variant. Advocates call ourselves intersex, as do human rights organizations supporting us, while the medical community and those seeking medical "cures" use DSD language.

Right under the surface of the embracing of DSD language by doctors and many parents has been a great deal of homophobia and transphobia, though that has remained a subtext. It is that subtext that we now see revealed in the Nashville Statement, as conservative evangelical Christians have climbed aboard the DSD boat. Let's look at the Nashville Statement language to see how they deploy the language of disorder, and why.

The Nashville Statement and What it Means

I'll give you the most relevant text from the Nashville Statement for you to read yourself, but I have to warn you--it's written in evangelicanese. What the words mean for the conservative evangelical Christian activists who wrote them may not be at all apparent from the words as they are understood in ordinary English. So what I'll do is give you the text, and then a translation into everyday English.

Here is the most relevant language, from Articles IV-VI of the Nashville Statement:
  • Article IV: We affirm that divinely ordained differences between male and female reflect God’s original creation design and are meant for human good and human flourishing.
  • Article V: We affirm that the differences between male and female reproductive structures are integral to God’s design for self-conception as male or female. We deny that physical anomalies or psychological conditions nullify the God-appointed link between biological sex and self-conception as male or female.
  • Article VI: We affirm that those born with a physical disorder of sex development are created in the image of God and have dignity and worth equal to all other image-bearers. They are acknowledged by our Lord Jesus in his words about “eunuchs who were born that way from their mother’s womb.” With all others they are welcome as faithful followers of Jesus Christ and should embrace their biological sex insofar as it may be known. We deny that ambiguities related to a person’s biological sex render one incapable of living a fruitful life in joyful obedience to Christ.
Translated from the evangelicalese, this says something like this: "God requires binary sex and gender, and forbids homosexuality or gender transition. LGBT people are all sinners. Being born intersex is not the individual's fault, so it's not a sin. It is, however, a medical disorder, and if a doctor can be found who will assign an intersex child male or female, then infant genital surgery must be embraced, and the individual must identify with their assigned sex and as heterosexual or they become a sinner."

Oh, and thus under Article X, which compels rejection of sex, gender and sexual variance, parents who fail to seek out intersex genital mutilation for their children, or who accept it if their intersex children do not identify as straight members of their medically-assigned binary sex--those parents are committing a terrible sin and cannot call themselves Christians.

Intersex Advocacy as Sin

What the Nashville Statement reveals is that intersex advocacy is now fully on the radar of conservative evangelicals, who oppose it.

The main goal of intersex advocacy is to stop doctors from being allowed to impose unconsented-to sex change surgeries on babies. Our society would never allow this for the endosex babies it frames as "normal," and should not allow it in the case of intersex ones. Medical interventions aimed at changing the sex characteristics of someone's body should only be performed if a fully informed, sufficiently mature individual requests them of their own will. (Yes, of course, if an infant has a functional impairment that endangers their physical health, parents should be able to consent to medical treatment limited to fixing that impairment--but the vast majority of intersex genital surgeries are performed without the child having any functional problem.)

After this core priority, the goal of intersex advocacy is to ensure intersex children can grow up in a family, community and medical regime that treat intersex bodies and healthy and beautiful. We want to ensure intersex children full freedom to explore and assert their own gender identity, whatever it may be. We want them to have access to any medical interventions they mature to desire, but to make decisions about any medical interventions completely free from coercion, in a context where choosing to access no interventions is fully supported.

The Nashville Statement calls this sin.

According to the Nashville Statement, part of submitting to the will of God means, in the case of intersex individuals, submission to the will of doctors. Doctors are treated as agents of God's will in determining a binary sex to which to assign a poor benighted, disordered intersex infant. It may seem quite strange for religious authorities to declare medical authorities diviners of God's will, but in fact this partnership between religion and science in enforcing binary sex/gender ideology has been around for centuries--you can read my prior post discussing that here. It was perhaps at its height during the heyday of European colonialism, when Christian missionaries partnered with European scientists and doctors to pathologize and dismantle nonbinary sex categories among colonized peoples. But there's an ongoing religious and scientific partnership in proselytizing the ideology of "natural sex," and we see that very clearly in the case of the Nashville Statement.

Here, we see conservative evangelical leaders joining doctors in framing intersex as disorder. Intersex people must be medically assigned to a binary sex and have their bodies altered to conform to it as much as possible. To object to this is now not simply to fail to respect medical authority-- it is now proclaimed to violate God's will.

What Does This Mean for Intersex Advocacy?

I believe that what this means for us is that a storm is coming. In the past, conservative evangelical opposition to variance in sex, gender and sexuality hasn't focused on intersex advocates. We've been dismissed as pitiful, freakish, and rare, and conservative religious approaches to us haven't been consolidated.

Well, now they have been. And in terms of advocacy, for me the main takeaway here is that the Nashville Statement answers the questions of whether intersex advocacy should be making common cause with LGBT advocates.

For many years, intersex communities have been divided over whether we should be placed "under the LGBT+ umbrella." Intersex support groups where parents of intersex children have had a strong voice have tended both to embrace DSD language and resist the idea of allying with LGBT communities, because their goal has been one of assimilation. The have desired to to distance the community from people viewed as radical and queer and present intersex people (or "people with DSDs") as "normal." This tendency is likely to continue. There's a growing number of parents who have been educated by trans and intersex advocacy who oppose surgical alteration of their intersex babies' genitalia, but for the larger group that view intersexuality as a curable disorder, the Nashville Statement is actually likely to be fairly resonant.

But then there are those of us who are out intersex advocates fighting the pathologizing and mutilation of our bodies. And among us, while opinion about whether to ally with LGBT advocacy groups has been much more positive, there are still those of us who have been against it. This is not because of an assimilationist desire, but out of frustration with LGBT+ organizations that have demonstrated poor allyship. I will acknowledge that there's been a substantial amount of ally failure. Common examples include organizations that put an "I" in their group acronym (such as LGBTQIAA) without having any out intersex people in their group; treating sex variance as an abstract concept to use to advance an LGBT group's agenda without recognizing us as actual people around them who need to be understood and aided; misunderstanding intersex community needs as being primarily about respect for gender identity instead of ending IGM and other forced medical interventions; and denying that physical sex has any reality as a tactic for fighting transphobia, which makes it impossible to even articulate our mutilation and suffering.

But whether we are satisfied with how we have been treated by LGBT organizations and advocates or not, we are all in the same boat in the eyes of those who would cause us vast suffering and call it "Christian love." And because our community is most likely to be in the closet, our organizations younger and smaller, and our suffering least understood by the general public, we really really need the aid of LGBT community partners.

So: it is time for us to do a whole lot more educating--of both LGBT advocates with whom we share common cause, and of the general public. And it is time to prepare for the active opposition of conservative evangelical groups that have announced in the Nashville Statement that opposition to IGM is now right up there with advocating marriage equality or support for gender transition as acts that claim "ruin human life and dishonor God."

Wednesday, February 20, 2013

Hypospadias: Intersexuality and Gender Politics

If you are looking around for information about intersexuality, one of the first things you're likely to read is that "most intersex children are assigned female at birth."  This is in fact false.  

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.