Inter/Act – supporting young people with DSD/Intersex conditions

Feminist Conversations is a regular series here at Feminists For Choice. Today we are talking to Jim Bruce, Communications and Youth Coordinator for Advocates for Informed Choice, about the program Inter/Act. Inter/Act is the first intersex youth leadership development program in the world and is a project of Advocates for Informed Choice. Inter/Act encourages young people with DSD or intersex conditions to share their opinions and experiences.

1. Tell our readers a little bit about Advocates for Informed Choice and Inter/Act.

Advocates for Informed Choice (AIC) is the first, and only, organization in the U.S. to undertake a coordinated strategy of legal advocacy for the rights of children with intersex conditions or DSDs (differences of sex development). AIC uses innovative legal strategies to advocate for the civil rights of children born with variations ofreproductive or sexual anatomy. Our project engages parents, doctors, attorneys and intersex activists in strategy discussions; stimulates legal dialogue about the fundamental rights of children born with intersex conditions or DSDs; and employs traditional and non-traditional legal tools to ensure justice for children born with intersex conditions or DSDs. These activities are grounded in a sense of respect and compassion for the children, parents, doctors, and intersex adults involved.

Inter/Act is the first intersex youth leadership development program created exclusively to facilitate tomorrow’s intersex advocates. Inter/Act is a place for young people with intersex conditions or DSDs the world over to come together, express themselves, and unite their individual stories to develop a voice for a new generation. Inter/Act’s goal is for peers, parents, doctors, scholars, and supporters to gain a better understanding of the varied experiences and perspectives of young people with different bodies. Inter/Act’s blog presents the unique voices of members in the Inter/Act community. Inter/Act welcomes young people with intersex conditions/DSDs no matter how they identify.

2. How important is it for people with DSDs or intersex conditions to represent themselves?

The right to self-determination and bodily autonomy has always been a political goal of the intersex community. The progress made toward winning these rights is largely a result of brave intersex individuals being public, speaking up and demanding accountability from caregivers, policymakers and other intersex activists. More to the point no matter how someone born with an intersex condition identifies it is vital that parents of children with intersex conditions see intersex adults taking responsibility for their own lives.

[Read more...]

Feminist Conversations: Elizabeth Reis talks intersex

Feminist Conversations is a regular series here at Feminists For Choice. Today we are talking with Elizabeth Reis, Professor of Women’s and Gender Studies at the University of Oregon and the author of Bodies in Doubt: An American History of Intersex (Johns Hopkins University Press, 2009). She has also written Damned Women: Sinners and Witches in Puritan New England (Cornell University Press, 1997) and is the editor of American Sexual Histories (Blackwell, 2nd ed., 2012). 

1. What was the motivation behind writing Bodies in Doubt?

So much of the “history” of intersex begins in the mid-1950s with a critique of John Money and his colleagues at Johns Hopkins University. This was an important period, of course, because Money’s protocols became widely adopted, but it was hardly the beginning of the story of the medical management of intersex. As an early American historian, I wondered what happened to those born with unusual bodies in earlier eras. I wanted to find out how the gradual process of medicalization affected our understanding of how male and female bodies were supposed to look.

2. Disorders of sex development (DSD) are actually quite common (approximately one in every two thousand people is born with genital anomalies) and there are many different types of DSD. Can you tell our readers a little bit about this?

The numbers are tricky because not every intersex condition is obvious at birth. It’s somewhat easier to “count” something as intersex if an obvious genital anomaly appears right when the baby is born. But there are some conditions that don’t manifest themselves until later, at puberty, for example. If a girl doesn’t start her period, her parents might eventually take her for an ultrasound where they find that she has internal anatomy typically found in boys. This is what can happen with Androgen Insensitivity Syndrome. The body is insensitive to androgens, and so the child looks typically female at birth, is raised as a girl, but then never gets her period. She has no uterus but instead has internal testes and XY chromosomes. Most people never get their chromosomes tested, and so we just assume that all girls are XX and all boys are XY. This isn’t the case, in fact.

You’re right that there are far more babies born with DSDs than most people are aware of.  This is because we have treated intersex as if it’s something to be ashamed of, which it is not.  Parents have been advised not to tell anyone, even their own child, what is going on.  Consequently, many children grow up with a sense of secrecy and shame about their bodies and unaffected people never hear that much about any of this. And when they do, it’s often mixed with a lot of inaccurate information and old-fashioned terminology. For example, intersex people used to be called “hermaphrodites.” This is now considered a derogatory term because it conjures an image of mythical creatures, not actual people!

3. You discuss how the ideas about stereotypical masculinity and femininity drove the treatment (both medical and social) of individuals with different types of DSD. Do you think the treatment of these individuals would have been different and less discriminating if we had more flexible opinions about gender and gender roles?

I do think that our conception of gender roles and gender presentation is very limited. I would say that in general, our understanding of “normal” of just about everything is quite narrow, and we desperately want to fit within those limited confines. What makes dealing with intersex even more complex is that parents are often asked to make decisions regarding their child’s body. Of course, parents want what is best for the children. They want them to be happy and they want them to grow up without being teased or ridiculed for having an unusual body. And so many parents might consent to “normalizing” surgeries for their child so that their genitals will look more typical, but sometimes these surgeries have negative consequences. For example, most girls do not have a very large clitoris. In the past, doctors generally removed or reduced large clitorises so that the girl’s genitals would look more like those of a typical girl. The problem with this approach is that now that girl will have reduced (or even no) sexual sensation. Today physicians are much more cautious about this kind of surgery, though it still happens because we are not used to seeing girls with such anatomy.

Boys had their genitals modified as well. Some born with what is known as a “micro-penis” had their genitals surgically altered to become girls, in the past. The thought was that a boy couldn’t possibly live as a successful boy with such a disfigurement. Since the late-twentieth century, attitudes towards these surgeries have changed, largely as a result of intersex activism that began in the 1990s. Some people who endured these procedures never felt right as girls, and would rather have been boys with different-looking genitals than girls. If, as a society, we felt more comfortable with difference, we might not be so eager to surgically repair bodies that don’t actually need repair.

4. You suggest changing the name “disorders of sex development” to “divergence of sex development.” Do you think that this will help show that DSD are more common than people know?

I would like to see the name changed from “disorders” of sex development to “divergence” of sex development, or even “variation” of sex development . . . anything that doesn’t encourage unnecessary pathology would be preferable. Perhaps, as you suggest, a different name might also suggest that it’s more common than people realize, but primarily my reason for disliking “disorders of sex development” is the use of the word “disorder.” Most people will assume that a disorder requires fixing, and that isn’t always the case with intersex. Of course, sometimes there might be an underlying metabolic concern that needs careful medical attention, but often the issue is merely cosmetic or social. I think that using the word “disorder” reinforces the notion that every body has to look a certain way, and that everything can be fixed. As many scholars and intersex people have demonstrated, often the medical “fix” can make things worse. Loss of sexual sensation, incontinence, scarring, in addition to the emotional trauma of constant surgeries. . . we need to ask ourselves if all of these things are worth the effort to normalize bodies.

5. In regards to the reproductive rights of individuals with DSD, what would you like to see happen in the future?

I would like to see ALL people be treated with dignity and respect, no matter the shape of their genitals or the composition of their internal organs or chromosomes. I would like to see all people told the truth by medical professionals, even if the truth is less promising than what they think people want to hear. I would like parents of intersex children to be in contact with other parents who have gone through similar circumstances so that they can compare notes and not feel like they’re the only ones with a child they weren’t expecting. I would also like prospective parents to know about the possibility of intersex births so they don’t feel pressured to make permanent decisions about their baby’s body right after they’ve given birth.  Most intersex births do not require emergency surgeries, and parents should be told that. I would like intersex teens to have a chance to meet and support each other. There’s a wonderful group of young people in the U.S. called Inter/Act that works with Advocates for Informed Choice. They just published a brochure designed for parents and doctors that is just fabulous. Mostly, I’d like to see intersex discussed more openly and honestly, and I’d like to see our understanding of what is “normal” broadened.

De-Queering the Fetus

recent article by Alice Dreger, Ellen K. Feder, and Anne Tamar-Mattis documents the controversial application of prenatal dexamethasone in pregnant women. The impetus for this pharmacological therapy is to stop virilization in female fetuses that may be affected by a form of congenital adrenal hyperplasia (CAH) called 21-hydroxylase deficiency or 21-OHC CAH.

Don’t allow the medical jargon to turn you away from what’s taking place here: the steroid is administered to pregnant women with the goal of stamping out intersexed bodies while ultimately minimizing the likelihood that a female will grow to be butch, lesbian, bisexual, and/or transgender. Yes, you read that right. This is an ongoing medical project that is motivated by homophobia, transphobia, sexism, and cissexist ideals. Let’s back up a bit and unpack some of the medical jargon that complicates our understanding of systemic hate.

CAH is a disease of the endocrine system (the hormone regulating mainframe of the body). There are variations of CAH and the one of interest here is 21-OHC CAH. 21-OHC CAH leads to an over production of androgens, which could lead to a genetic female fetus “developing along a more masculine pathway neurologically and genitally” (5). The term for this masculinization is virilization, which manifests in many ways but can lead to masculinized female genitalia, of which is a surface motivation (e.g. justification on grant applications) for the use of prenatal dexamethasone. CAH is a serious disease and as such, every U.S. state requires that newborns be screened for it. However, at case here are fetuses that may be affected by CAH, not newborns that are affected by it. The authors expose that 87.5% of those fetuses that are exposed to prenatal dexamethasone stood no chance to benefit from the therapy at all.

Prenatal dexamethasone is a steroid that is theoretically used to stop the effects of 21-OHC CAH. However, the drug is experimental and there is no substantial support for its use. In the U.S. it is categorized as “off-label,” which means that it is not FDA approved. As it stands, there is very little known about the impact of the therapy but it may alter “fetal programming,” which can result in serious metabolic problems that may not be apparent until adulthood. For 30 years, the steroid has been used to combat virilization in female fetuses and yet, little is known of its impact because there are few long-term studies that explore its impact—of those, the populations are not representative and the protocol does not meet national or international scientific standards. In fact, the Endocrine Society set up a task force to look at the effectiveness of the pharmacological therapy. The task force found very little support for the use of the steroid and “could not even say with confidence whether prenatal dexamethasone works to reduce genital virilization” (2).

Nonetheless, it has been administered to pregnant women on false pretenses. The pregnant women were/are not informed that the “off-label” steroid is experimental, that benefits and risks have not been established due to lack of adequate testing and scientific protocol, and that exposed fetuses are studied retrospectively effectively rendering moot any correlation between the drug and the fetus born one way and/or raised another.

The “most prominent promoter” of this therapy is Maria New, a pediatric endocrinologist at Mount Sinai School of Medicine. By 2003, New has “treated” more than 600 pregnant women with dexamethasone in order to prevent virilization in CAH-affected female fetuses. That number is as high as 2,144 fetuses. This is where the story turns sour and scary—or more sour and scarier.

Despite a lack of support for prenatal dexamethasone Maria New insists that it “has been found safe for mother and child” (15-16). The authors of the article do some bold investigative work and turn to New’s grant applications discovering some interesting motivations for the continued use of the steroid.

Those few studies that do exist show that girls affected with 21-OHD CAH exhibit “behavioral masculinization.” These girls are on average “more interested in boy-typical play, hobbies, and subjects that non-affected females, less interested in becoming mothers, and more likely to grow up to be lesbian or bisexual” (6). Some clinicians find that of those females with 21-OHD CAH, 5% may ultimately identify as male. “Behavioral masculinization” is a euphemism for non-traditional gender performance or expression in women, females, and/or girls. It seems that the underlying motivation has less to do with ambiguous genitalia (which is problematic itself) and more to do with minimizing “tomboyism,” non-heterosexuality, and trans* embodiment.

Interestingly, the U.S. National Institutes of Health have funded Maria New’s work in figuring whether or not prenatal dexamethasone works to stop “behavioral masculinization.” Said another way, the U.S. government funds New’s work in stopping queerness and/or trans*ness in those potentially affected with 21-OHD CAH. Please, read that again for the sake of letting it sink in.

One justification for using prenatal dexamethasone is to minimize the chances of having a child that is intersex so that “corrective” surgeries will not be necessary. However, such “corrective” surgeries are elective and yet this reason is used as grounds to administer this potentially dangerous drug.

The unknown effects of prenatal dexamethasone are as potentially damaging and traumatic to intersex bodies as invasive “corrective” surgeries that claim to “fix” a problem when the problem isn’t the fetus at all. The inspiration for this pharmacological therapy is stigma and anxieties surrounding intersexed and/or queer bodies. It is a medical intervention that works to ensure the production of relatively normative bodies no matter the cost to those that are at risk of teetering between cissex and intersex embodiment. The anxiety/fear-inspired application of prenatal dexamethasone points us to the intersection of sex, gender, and sexuality and those systems that work to keep them aligned more nicely.

Speaking to parents of children with CAH, Maria New “showed a picture of a girl with ambiguous genitalia and said: The challenge here is to see what could be done to restore this baby to the normal female appearance which would be compatible with her parents presenting her as a girl, with her eventually becoming somebody’s wife, and having normal sexual development, and becoming a mother. And she has all the machinery for motherhood, and therefore nothing should stop that, if we can repair her surgically and help her psychologically to continue to grow and develop as a girl” (italics mine 6).

For New, the prominent cheerleader in prenatal dexamethasone therapy, girl/female/woman are one and the same and are heterosexual desiring motherhood and marriage. For New, queer variation is inconceivable. For New, prenatal dexamethasone is the ultimate in conversion therapy because it gets at the “problem” before it is a problem. It does so even though the long-term impact is unknown and potentially fatal. New, and her supporters, will do whatever it takes to ensure that queerness is squashed at every chance. For the record, you can contact Maria New at maria.new@mssm.edu.

Gender Bending Chickens?

Just when you thought science couldn’t get any better, a new article in Nature is about to shake up our ideas of sex and biology.

Contrary to an old view of sexual development, Michael Clinton and his colleagues at the Roslin Institute in Edinburgh say in the March 11 Nature, individual chicken cells can maintain their own strong male or female identities during development instead of being directed by hormones.

Clinton says his research group ended up considering hormones and sexual identity in the course of studying three peculiar chickens donated to the Roslin Institute. Each bird looked like a rooster on one side, with a long wattle jiggling under its chin, robust legs and bulging muscles. The other half of the same bird — the right side on two birds and the left on the third — had the darker plumage, reduced wattle and dainty ankles of a hen.

Such male-female mashups, called gynandromorphs, have turned up spontaneously in zebra finches, pigeons and parrots as well as in other kinds of animals, Clinton says. These cases challenge the traditional view that genetics takes a back seat to hormonal signals in guiding vertebrate sexual differentiation.

[Read more...]

Celebrating Women’s History Month

Happy Women’s History Month, to all of you Feminists For Choice! Here’s a quick list of pro-choice and women’s history related links, as well as an AWESOME video at the end!

How Pro-choice are You? – The Abortioneers
CBS Behind Anti-Choice Billboards in Atlanta – RH Reality Check
Honoring Intersex Activist Cheryl Chase – The Bilerico Project
The Art of Claude Cahun – The Bilerico Project

Caster Semenaya to Retain Gold Medals

Caster SemenayaHere’s a bit of bright news to kick off your weekend. Runner Caster Semenaya will be allowed to keep her gold medals. According to GLAAD:

Today, the International Association of Athletics Federations (IAAF) announced that they will allow Semenya to keep the gold medal and prize money she won at the World Athletics Championships in Berlin, Germany. The IAAF also made it clear that her official gender-verification testing results will remain confidential.

So the bit about the confidentiality is a little bizarre, since it was already leaked all over the internet that Semenaya is intersex. In my opinion, Semenaya’s case wouldn’t have even been brought up for a debate if she had presented a more Western style of femininity. I think her story represents an intersection of gender, race, and class that is very problematic. Female athletes have historically had to overcome claims of being too masculine, but when you throw the issue of race into the mix, it’s a pretty sticky ball of wax. But kudos to the IAAF for pulling its collective head out of its ass and recognizing that Semenaya is a great athlete.

Tuesday News Roundup

mouse2Misconceptions #1: Only a “Certain Kind of Woman” Has an Abortion – Cherry Hill Women’s Center
When You Discover You’re Intersex – Womanist Musings
C-Sections: The New “Pre-Existing Condition” – RH Reality Check
Scott Roeder’s Trial to be Delayed Until January – Roeder Watch
South Dakota Appeals Abortion Ruling – Sioux Falls Argus Leader

Caster Semenya is on suicide watch

caster semenyaGuest writer Shanman is a queer trans boi working on a PhD in Women’s Studies. He is interested in constructions of motherhood, transgender theory and history, and Wii Rock Band. His dog is his best friend. Shanman regularly blogs at Transgrad.

The IAAF and the media’s ignorance and lack of respect for Caster Semenya has had and most likely will continue to have disastrous effects on Semenya; she is currently on suicide watch.

Some folks have argued that Semenya should not be allowed to participate in IAAF sports because she has an unfair advantage. I disagree. The question seems to be about testosterone, that wonderful chemical that turns humans into supermen. But this isn’t about testosterone or unfair advantages; this is about regulating and disciplining bodies. [Read more...]

What the Heck Does Intersex Mean?

xyGuest writer Elliott Weiss sent me a very though-provoking e-mail in response to my post this week about Caster Semenaya. Elliott is a fourth year med student who will start a pediatrics residency next year and most likely a neonatology fellowship after that. Elliott studied English & Biology in college, but also took courses in feminist theory and philosophy. Here’s what Elliott had to say about what the term “intersex” means.

Especially in the past two decades, physicians have become increasingly aware of and sensitive to the complexities surrounding issues of gender and sex. It is well established that there are at least three distinct levels of sex: chromosomal (e.g. XX vs XY), internal organs (uterus and tubes vs. testes), external organs (vulva vs. penis). Add to these secondary sex characteristics (breast development vs. facial hair) which results in from a combination of above factors and external environment. Add also gender identity.

Most dramatic is the newborn with ambiguous external genitalia which is not uncommon, especially in pre-term babies. Most of these are simply underdeveloped babies, who will go on to become “normal” adults with chromosomal, internal organs, external organs, and secondary characteristics all of a single gender. In these cases, testing is done quickly to enable parents to answer the first question everyone asks. [Read more...]

A Simple Solution to the Caster Semenaya Controversy

Caster SemenayaCaster Semenaya, the runner who was forced to undergo “gender testing,” has caused a lot of controversy over the past few weeks, especially on Friday. The media and the blogosphere were quick to start lobbing the term “hermaphrodite” around when it was revealed that Semenaya lacks a uterus or ovaries and that her body produces more testosterone than a cis-gendered woman. I have several problems with the media’s treatment of the story.

First of all, the term “hermaphrodite” is considered to be offensive by most intersex people. The term “intersex” refers to anyone who is born with ambiguous genitals, someone who has the internal reproductive organs of both sexes, or someone whose chromosomal sex varies from the XX or XY combinations. According to statistics, about 1 in 2000 children is born intersex – which is about as statistically common as a child being born with Down Syndrome. But our society is so locked into binary modes of thinking (i.e. boy/girl, pink/blue) that we never talk about this. In fact, most parents are told that their child must have surgery in order for them to live a normal life.

Surgery is definitely being recommended in Caster Semenaya’s case. According to Womaninst Musings:

The International Association of Athletics Federations (IAAF) is ready to disqualify Semenya from future events and advise her to have immediate surgery because her condition carries grave health risks. They have also not ruled out stripping Semenya of her 800m world championships gold medal . . . [Read more...]