September 21 2019 | Opinion Piece

Reading Advisory: This article contains graphic descriptions of traumatic experiences.

“When I was 11, they did a vaginoplasty. So they, without my permission or consent, stretched out my vagina in ways to make it more [accommodating] to my ‘future husband’s’ penis”. In the summer of 2018, 31-year-old Pidgeon Pagonis opened up to Teen Vogue about the cosmetic genital mutilation they suffered through during their childhood. The vaginoplasty was not the first surgery performed on Pidgeon’s genitals without their consent. At four years old, Pidgeon was subjected to a clitoridectomy. A clitoridectomy is a surgery that permanently dampens a person’s ability to experience sexual sensation. “...they literally just removed my clitoris.”

Pidgeon is far from the first person this has happened to - and they won’t be the last. Thousands of intersex people have been subjected to Intersex Genital Mutilation (IGM) -- i.e. surgical procedures done on the genitals of intersex children who are too young to consent.

Intersex people are individuals who are born with neither exclusively male nor female biology. Intersex is an umbrella term - there are many biological variations that fall under the label. A person could have XY chromosomes but be resistant to androgens, causing them to have the outward appearance of a cis female, or vice versa. A person could have ambiguous genitals, looking somewhere between a vagina and a penis. A person could have one set of external genitals and a different set of internal sex organs. 1 in every 2000 people, (163,600 Americans) are born visibly intersex.

If an infant is visibly intersex, like Pidgeon Pagonis, it is very common for doctors to perform surgeries on the baby to make their genitals align with one sex or the other. Sometimes parents will be told this is necessary because atypical sex organs can lead to health problems and psychological distress. However, in many cases, evidence that the surgeries would harm the patient greatly outweigh the evidence of the supposed benefits.

Sometimes, doctors don’t even bother with the pretense. “They didn’t even come up with an excuse basically, in terms of a health related reason…” Pidgeon explained to Teen Vogue, “...They instead just said it was about the appearance.”

In the 1950’s, Dr. John Money was the first person to popularize the idea of assigning an infant a gender using surgery. In a famously unethical experiment, he took a cis gender baby boy, David Reimer, who’s penis had been accidentally damaged, and reconstructed his genitals to appear like a vagina. He prescribed David hormones and told his parents to “raise him as a girl.” Thirty years later, David identified as a man. He would go on to commit suicide. By that time, Dr. Money’s experiment had already gained traction in the medical world. By the 1960’s, surgeries assigning a gender to intersex kids were very common.

Besides being invasive, these surgeries can cause serious health problems later in life. The majority of infants born visibly intersex are physically healthy, but people who are subjected to “normalizing” surgeries often lose their natural abilities to produce sex-related hormones. These people then need to go on medication in order to experience puberty, and then remain on medication for the rest of their lives. People who have had their gonads removed also need medication in order to avoid developing osteoporosis, or “brittle bones”.

Like any medical condition, this is a far more serious problem for people without health insurance. Alicia W., an an intersex person from Texas, gave a testimonial to Lambda Legal in which she stated, “[I’m] still forced to rely on hormone therapy— which can be expensive and difficult to access. I’ve had to make certain life decisions solely based on ensuring I’d be able to receive medicine that I wouldn’t need otherwise. Living in the South, access to women’s health care is under constant threat, and often those issues are exacerbated for intersex people who need birth control not for contraception but to maintain normal bodily functions.”

If these “normalizing” surgeries can cause such serious problems for the recipient later in life, why are so many intersex people still subjected to them? Often, the decision to perform surgery and prescribe hormones is based on the idea that having a binary gender is crucial to a person’s existence, and that a person can’t function without a clear male or female designation. By extension, these procedures work to help the patient fill the “role” set out for them by the gender they are assigned.

Hans Lindahl, an intersex person from California, was assigned female and subjected to surgeries and hormone therapy in order to ensure that they could better perform the sexual “duties” expected of a female. "Everything that doctors did ‘for me,’ they did for someone else. My feminizing hormones and surgeries were, in my doctor's words, to ‘develop for my future husband.’ Those words ring in my ears every day. Now, hips and breasts feel pasted onto me as an afterthought, reminders that, as a female-assumed non-binary intersex person, my body belongs to the male gaze. Medicine enforced that,” they said.

Hans was subjected to similar “treatments” as Pidgeon, the object of which is to improve the quality of penetrative vaginal-penile sex. This is common for intersex people assigned female, while people assigned male will commonly receive a surgery to increase the size of the penis. These surgeries are mostly cosmetic, and oftentimes actually destroy the ability of the intersex person to experience sexual sensation.

In the summer of 2018, Lambda Legal released a suggested guideline for the treatment of intersex patients, in which it is explained that these surgeries are “...problematic because they are often based on the heteronormative assumption that the intersex child will grow up to be heterosexual and desire penile-vaginal intercourse and on gender stereotypes that presume males would prioritize penis size over reproductive capabilities and females would prioritize penetrative sex over genital sensation.”

The medical community consistently fails intersex people. According to a social worker who assisted intersex children and their parents, interviewed by Human Rights Watch, the parents of intersex children are often mislead about their child’s health. “I’ve seen surgeons present to families in a way they couldn’t possibly understand, and then not present doing nothing as a viable option...and then think that they went through a full informed consent process. And clearly, they had not. They presented it basically as: ‘You can medically neglect your child, or you can do surgery...’ and used words that I didn’t even understand, then gave them a form to sign and they want to do it because he has a white coat on and they’re scared.”

Since so many intersex people are subjected to these surgeries, and there is such shame and stigma surrounding the intersex community, it is very easy for medical professionals to convince parents and patients alike that being intersex is much rarer and more dangerous than it is. Sometimes this is not intentional, and the medical professionals themselves are just as uninformed as the parents.

“As medical professionals we get really little training in the intersex community” explains Dr. Kevin Wang, a family medicine physician and Planned Parenthood board member, to NBC news. It is up to medical professionals to seek out training in intersex biology themselves, and this can led to devastating mistakes when it comes to handling their patients.

In 2017, urologist Dr. Ilene Wong wrote in Newsweek, “Eight years ago, I did irrevocable damage to the first intersex person I ever met.” Dr. Wong was referencing a “normalizing” surgery she performed before she had done adequate research into the long-term effects of these surgeries. Dr. Wong is in the minority of doctors who have openly condemned intersex surgeries in the public eye. Alice Dreger, a bioethicist who served on a National Institutes of Health (NIH) intersex research project, wrote that, “While many clinicians have privately shared my outrage about these activities, in public, the great majority have remained essentially silent.”

When maintaining gender binary is seen as more important than a patient's autonomy and health, it’s easy for a person to simply be swept along by their healthcare professionals. Esther Morris Leidolf, an intersex woman and author of The Missing Vagina Monologue wrote about her own experiences with the healthcare system. “What I wanted and needed most from my providers was guidance to learn how to live with my condition. My medical care was focused on disappearing it. Surgical intervention was the only option I was offered, which in turn robbed me of the opportunity to get to know who I really am. It’s too late now. I had ‘corrective’ surgery when I was 15 years old. I was asked what I wanted for the first time when I was 47.”

In order to end this medical mistreatment of intersex folk, new legislation must be made to protect intersex children from invasive surgeries. In 2018, California passed a resolution to halt all cosmetic genital surgeries on infants, becoming the first and only state to do so. However, in April of this year the bill was removed from the legislative calendar. Senator Scott Wiener claims he will try to reinstate the bill, Senate Bill 201, for voting this coming January.

Arguably the most important way to end the harmful and outdated medical procedures inflicted on Intersex folk is for medical professional to become properly informed. Lambda Legal’s guideline for intersex-affirming hospital policies is available for free download on their website. It is an extensive list of policies and testimonials pertaining to the treatment of intersex patients, emphasizing that performing cosmetic genital surgery on a child is not okay.

If you are not a medical professional, there’s still a lot that you can do, such as supporting legislation like SB-201. You can also be more accommodating to the intersex people in your everyday life by simply remembering that the male-female binary is not definitive. Many people do not fit into one category or the other, and that’s completely natural.

You can also donate to organizations run by intersex people for intersex people, such as InterACT, an advocacy group for intersex youth, or AIS-DSD Support Group, the largest intersex support group in America.

If you are an intersex person who has experienced these injustices firsthand, you are not alone. Here is a short compilation of intersex people who’s work you can find online and in print:

1. Abby Parmellee: Model and youtuber. Her channel, Abby Parmelle, has videos about what it is like to be trans/intersex.
2. Sean Saifa Wall: Activist, artist, and public health researcher. His website unbornson.com contains his art as well as videos of public speeches and interviews where he talks about his experiences as an intersex man.
3. Pidgeon Pagonis: Writer, activist, filmmaker. You can find Pidgeon’s work on their website pidgeonismy.name.com, as well as their youtube channel, where they make in depth videos about their experiences, often in collaboration with other activists such as Emily Quinn.
4. Emily Quinn: Activist, producer, animator. Emily quinn’s viral ted talk takes a humorous yet wise spin on the intersex experience. You can find her art and many interviews on her site.
5. Hanne Gaby: Model, Activist. Hanne Gaby has walked for brands such as Marc Jacobs and has been featured in magazines such as Vogue. You can watch interviews with Hanne on platforms such as Teen Vogue, POPSUGAR, Associated Press, and Time.
6. Kimberly Zieselman: Activist, Non-profit Director. Kimberly is the executive director of InterACT, a non-profit advocacy group for intersex youth. You can support her work at interactadvocates.org.
7. Ori Turner: 12-year-old Ori Turner gives positive Ted Talks with their mom, Kristina Turner. Ori is America’s youngest intersex activist.
8. Cheryl Chase: Activist, Producer, editor, farmer. Founder of The Intersex Society Of North America, Cheryl realized a short film in 1995 titled Hermaphrodites Speak! Cheryl is also the editor of the journal Hermaphrodites with Attitude. She now lives on a farm with her wife - truly living the dream!
9. Hans Lindahl: Cartoonist, Communications Director. Hans is the communications director for InterACT, and also writes and illustrates short comics about their medical history. You can read some of their work at hanslindahl.com.
10. Suz Temko: Activist, Model. Suz Temko gives lectures at universities such as Oxford and Cambridge and is the face of Dove’s #womengettold campaign.

“Meeting other intersex people, and finding a community, or a support group, can be one of the most important aspects in your healing process,” Pidgeon Pagonis said. “We’re out there, we’re out here, we’re here. I just hope you can find us.”

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