WEBEXCLUSIVE

How To Treat Intersex People

Alice Dreger
Galileo’s Middle Finger: Heretics, Activists, and the Search for Justice in Science (Penguin Press, 2015)

I.W. Gregorio
None of the Above

(Balzer + Bray, 2015)

Intersex people have been mistreated for a long time. Two doctors—one a professor, the other a surgeon—wrote books to shine light on this injustice. In Galileo’s Middle Finger, Dr. Alice Dreger, a professor of clinical medical humanities and bioethics at Northwestern University, examines the enduring history of unethical medical practices imposed on intersex patients. Surgeon, Dr. I.W. Gregorio, tells a story about a teenager discovering she is intersex in the young adult novel, None of the Above. These two books represent vastly different literary genres and readers, yet together they confront the pervasive lack of knowledge about intersex people and their systemic mistreatment in medical institutions and in society at large.

In chapter one of Galileo’s Middle Finger, “Funny Looking,” Dr. Dreger informs readers that being intersex is the condition of having a blend of both female and male anatomical features. As a graduate student, her research into the prevalence of such sex anomalies began in the 1990s, when to her shock, she opened one of the H volumes in the worldwide index of 19th century medical literature and read page after page of cases on “human hermaphrodites from 1800s.” On rare occasions, patients were even diagnosed with a “mistaken sex” and reassigned genders; Dreger writes, “The ‘mistake’ was often blamed on some stupid midwife.”

She labels this era the Age of Gonads, encapsulating the time before biopsies, when one’s “true sex” was whatever appeared most believable. Afterwards, when medical advancements enabled doctors to diagnose working testes in women or ovaries in men, they began to intervene, to remove, to “fix” bodies that were actually functional. Through her friendship with Bo Laurent, the leader of the Intersex Society of North America, Dreger came to realize how much harm the “heterosexist system of shame and secrecy” that served to enforce the “two-sex social order” had caused over the years.

“The problem was that, in the service of strict gender norms, people were being cut up, lied to, and made to feel profoundly ashamed of themselves,” Dreger writes. Her friendships and research led her to advocate: “Children born with genitals that look funny but work fine should not be surgically altered just because their genital appearance upsets or worries some adult.”

Penthouse magazine and Christian Life Radio agreed (if on nothing else) with this stance and requested interviews with her in 1998. Why they agreed varied. One: People ought to have consent over their sexuality. The other: God doesn’t make mistakes. Nonetheless, both represented the early oppositional voice to elective pediatric “sex normalizing” surgeries.

The pro-side of the argument is considered to be so blatantly obvious that for decades it was hardly spoken about. Since the 1950s, medical professionals often withheld the information that surgeries were being performed at all. Based on the medical specialists’ best judgment, reinforced by institutional backing, surgeons snipped and clipped and stitched newborn genitalia to resemble the nearest approximation to their estimation of “a girl” and then swaddled them up in a pink blanket.

The “phall-o-meter,” a measuring stick created by intersex activist Kiira Triea, loosely illustrates how medical professionals assessed the visible anatomical features and concluded: If the penis was too short, castrate it into a clitoris. If the clitoris was too long, amputate it. For decades, surgeons operated under presumably good intentions and a “maximin” strategy, endeavoring to maximize the intervention in order to minimize the worst-case scenario. They had parents to keep calm and newborns to help give the best shot at surviving puberty.

How often might they have performed such surgeries?

“The specialist curators of sex tell us this,” Dreger writes, “In America today, about one in two thousand babies is born with genitals so notably intersex that a specialist team is immediately called in. About one in three hundred babies has genitals unusual enough that the average pediatrician will give the parents a referral to a specialist.” To come to an estimate, Dr. Dreger does some math, acknowledges the “dozens of kinds of sex anomalies” that are subtle and might go unnoticed without “fancy medical scans,” because beyond the anatomical parts, sex variation also occurs in the sex chromosomes, hormones, and internal structures. Dreger concludes, “The frequency of intersex in the human population comes to about one in a hundred.”

One in a hundred.

From that profound figure, Dreger proceeds in Galileo’s Middle Finger to flip the proverbial bird to the fictional notion of a two-sex binary in order to make research-substantiated suggestions about how a myriad of sexual minorities ought to be treated. She let’s her research lead her advocacy and over time helps shift the medical consensus to agree that “sex-normalizing surgeries” cause more harm in the form of loss of function, confusion, and shame. In the 2000s sex-change surgeries on small penises were drastically curbed; however, the ones that tidy the clitoris have just recently been challenged. The lingering doubt in specialists’ minds often presume that one day she’ll probably be less concerned with experiencing an orgasm, than she will be with appearing attractive enough for someone to impregnate.

At the close of her book, Dreger acknowledges how much has changed both medically and culturally in the U.S. since she began her research-based advocacy. She shares a story about “a very pretty Christian, cheerleader type” publically testifying that she has a Y chromosome and internal testes. She had been born with a genetic condition that lacked androgen receptors for her cells to respond to the masculinizing hormones her body made. Dreger explains she had “developed as a near-typical female in genital anatomy and brain” but without a uterus or ovaries. The young woman said she was glad to know and was grateful the doctors had told her the truth about her body.

How might someone like her be treated in high school?

The young adult novel None of the Above is a story about a teenager discovering she has a similar genetic condition. The novel’s heroine Kristin Lattimer is inspired by a real patient the author Dr. I.W. Gregorio met during her surgical residency—who, unlike the young woman in Dreger’s story, elected to have a gonadectomy—as did Kristin.

During her senior year of high school, Kristin has great friends, awesome teammates, a hot boyfriend, and (for the most part) a pretty sweet dad. She’s the homecoming queen and a track star. Kristin had always attributed her developmental delay to her rigorous cross-country training; but when she becomes sexually active and experiences an extraordinary level of pain, she visits an ob-gyn and learns why.

Kristin is diagnosed with androgen insensitivity syndrome (AIS), which is described to her as “a unique genetic syndrome that causes an intersex state—where a person looks outwardly like a female, but has some of the internal characteristics of a male.” Kristin goes to a specialist and is informed that she has no uterus, a two-inch vagina, internal testes, and is “pumped to the gills testosterone.”

“So I’m a man?” she blurts out in response. “I’ve always liked boys, so … ,” did that make her gay, and if not gay, trans?

The specialist explains: “chromosomal sex, gender identity, and sexual orientation are all separate concepts.”

Kristin hardly has a moment to comprehend such distinctions before she is forced to come face to face with others profound lack of understanding. Photos captioned with “It’s Kris—the Hermaphrodite” spread via text messages and social media. Friends she has known since birth re-named her “Kristopher.” Her boyfriend calls her “a homo.” Her locker is defaced with hideous spray paint: “Stay away, Tranny Faggot.”

To which she responds by wishing “they’d used more girly color. I’m a girl I’m a girl I’m a girl.

“I am a girl!” Kristin repeats over and over again.

When someone adds a Photoshopped phallus to a picture of her in a bikini at a car wash fundraiser for school, she closes down her Facebook account and decides to remove her internal testes.

“I couldn’t cut the Y chromosome out of each of my cells, but I could cut out those balls that everyone seemed so fixated on.”

She discusses her decision to have a gonadectomy with another intersex woman, who Kristin met through a support group. Timidly, Kristin questions, “why some people were so militant against surgery. In little babies, maybe I could see delaying an operation until they were older and could make their own decisions. But once you understood what you were … how could someone not want to be fixed?”

Her friend, who identifies as an intersex lesbian and proclaims proudly, “I heart my gonads,” nods with understanding.

Kristin admits: “I couldn’t conceive of a world in which I wasn’t broken,” nor to that end did she “want to be some poster child” for a gender-neutral society.

Her friend reassures her that she doesn’t have to be an “Übermilitant Intersex Warrior. I’m just telling you to be careful of letting other people define who—and what—you are.”

Author Dr. Gregorio renders Kristin’s story of coming to terms with herself with heartfelt sympathy. She narrates the controversial decision to have a gonadectomy through medical specialists, therapists, and friends that alert her (and everyone reading) to the risks that came with surgery and the subsequent daily doses of pink estrogen pills. Her supportive characters create a novel gaggle: a gay dad, sexually active teenagers behaving responsibly, therapists, who help Kristin understand how ignorance is the basis of phobias, and a school administration that actually intercedes on her behalf to confront the bullying.
           

Gregorio provides a step-by-step process for young readers to cope with such a diagnosis and for adults and allies to learn how to be supportive. This book in effect became the help Gregorio wishes she could have provided to the young intersex woman she met during her surgical residency. In addition to this important work, Gregorio also helped found We Need Diverse Books, a grassroots advocacy organization that challenges the publishing industry to produce and promote children’s literature that reflects and honors the lives of all young people. A charge that echoes Dreger’s rallying manifesto to the academic community that revolutionary thinkers and researchers cannot be cowed by institutional conformity and stop doing and reporting Galileo-style work.

Just as Galileo once looked up and realized that the sun didn’t revolve around the earth, the insights offered by these two books give us another way of seeing ourselves, comprehending our existence, and, in turn, being more respectful to one another. Challenged in both of these books is the worldview behind Kristin’s lament that “life was a multiple-choice test with two answers: Male or Female. And I was None of the Above.” Both Gregorio and Dreger champion the right for individuals to decide their genders—not surgeons, not society. Both remind us that a two-gender binary cannot be forced through surgery or peer pressure.

How ought intersex people be treated?

Dreger provides a good start when she recounts her experience of listening to people share their experiences at the San Francisco Human Rights Commission in 2004: “All of these people were simply asking to be given basic rights that were automatically accorded to all other humans: the right not to have your sex changed without your consent, the right to be told the truth about your medical history, and the right to be treated as an equal member of the human family without having to first pass through an operating theater.”

Today, Pidgeon Pagonis, who self-describes as, “I’m the letter you dont understand at the end of LGBTQI” continues the lesson on Twitter, @pidgejen.

Contributor

Amy Deneson

AMY DENESON is a writer in New York. Her essays have appeared in the New York Times, Salon, and Curve magazine, amongst others. She is currently writing a memoir about growing up in the Christian purity culture.

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