Amanda Saenz would like to turn back the clock.
Back to age 13 when a doctor said that surgery was the only option—and that it had to happen now. Because only later did Saenz realize the full gravity of what happened.
“I feel like I’ve been sterilized,” Saenz says.
Saenz has since come out as non-binary, too, and uses the gender-neutral pronoun “they” to reflect an identity that is neither strictly male nor female. Like many intersex people, Saenz underwent surgery to remove their gonads—surgery they didn’t understand at the time. (Saenz didn’t know, for example, that long-term hormone therapy would be required after surgery.)
“There was the day I was given a diagnosis,” Saenz recalls, “And then two months later, I was under the knife on an operating table, essentially.”
Saenz, who manages the youth program of the intersex nonprofit interACT, is now championing a new bill in California, SB 201, to prevent this from happening to others. Introduced on January 28, SB 201 would make California the first state in the country to ban medically unnecessary surgeries on intersex minors that could be “deferred,” as the bill states, until such time as those minors can provide informed consent.
The bill also outlines what informed consent looks like, requiring physicians to provide details about the surgery, its risks, and information about whether it can be delayed.
For many intersex people, these surgeries happened as infants, with parents and doctors making the decisions. As the advocacy group Human Rights Watch noted in its 2017 report on the phenomenon in the United States, these early surgeries were the default in the medical world until the last two decades of activism brought attention to their potential harm. Now, HRW reports, a “growing number of doctors are opposed to doing unnecessary early surgery”—but even still, the medical world has “uneven” and “piecemeal standards of care" for intersex newborns.
Some surgeons, HRW notes, “continue to perform medically unnecessary, cosmetic surgeries on children, often before they are one year of age.” HRW reached out to several specialists working in the area and although they anecdotally reported “a general decrease in surgeries on intersex infants,” none could say that their clinics had banned early, medically-unnecessary interventions altogether.
Even at age 13, Saenz doesn’t feel like they were given enough time or information to consent to surgery. In fact, it didn’t seem like there was another way.
“As a young person, going to these doctor’s appointments, you place so much trust in your physicians to do the right thing—and to do right by you and your health,” Saenz says. “I wasn’t questioning anything, but I also wasn’t involved in the conversation. There wasn’t a conversation around what I wanted.”
At age 13 in the year 2008, Saenz was brought to see doctors and specialists because they hadn’t started their period yet and they were experiencing lower abdominal pain. No one said the word “intersex” directly to them. (“I learned the word intersex because I overheard the ultrasound tech talking about it,” they recall.)
Rather, they were told that they had underdeveloped testes instead of ovaries and that the testes needed to be “removed immediately because there was a really high chance of developing cancer.”
Choice didn’t seem possible. “It kind of is just happening to you and at you,” says Saenz.
It’s true that Saenz’s gonads could have become cancerous—but Saenz says that the level of risk was inflated, making the surgery seem more urgent than it was.
“Because of this scare tactic, I was like, ‘Well, shit, I don’t want to get cancer. I have to go through this surgery,’” they recall. “I didn’t know whether or not it was something that I truly wanted for myself.”
Saenz’s parents lacked full context, too, and they were split between skepticism over the necessity of the surgery and distress over the seemingly sudden diagnosis. And now, like many intersex adults, Saenz is facing the full gravity of what occurred.
“I look at my body and I’m like, ‘That’s not entirely mine,’” Saenz says. “A lot of it was taken from me. A lot of its possibility for growth was taken from me.”
Coming to terms with that loss has taken time, they add: “The things that I underwent are things that, as an adult, I have to process, have to grapple with, have to do a tremendous amount of emotional labor to begin to understand.”
Above all, what bothers Saenz is how simple it would have been to avoid this pain: “A lot of the angst and anxiety that I’ve had in my life could have been easily avoided if I had just been given a little bit more agency, a little bit more knowledge.”
There are many others who feel similarly to Saenz—although, given the lack of solid longitudinal data on the intersex population, it would be impossible to say what fraction feels harmed by these medically-unnecessary surgeries, which can include reduction of the clitoris, removal of the gonads, labioplasty, and other procedures. (Some people who are born intersex, Saenz readily admits, take no issue with the surgeries that were performed on them at an early age—and may not even consider themselves intersex.)
Conversely, there is also no reliable literature, as HRW notes in its 2017 report, to prove the theory that “early, medically-unnecessary surgery is helpful to the intersex child” in the sense that it would aid their social functioning—a justification that physicians sometimes give to parents.
In the meantime, intersex people are speaking out about the sometimes negative consequences of such surgeries—both physical and psychological. One 55-year-old intersex woman interviewed in the HRW report, for example, said that a cosmetic surgery performed on her vagina at age 16 left her without any ability to feel “sexual gratification because basically all nerves were cut away.”
Almost all of the intersex people HRW contacted said they felt “dread and horror” in doctors’ offices to the point that they “avoid care” altogether.
“What parents and doctors don’t understand is that after surgeries, after procedures and treatments, ... sometimes the impacts of the treatments we received negatively affect us throughout our lives," said one interviewee.
Increasingly, medical and ethical bodies are listening to these intersex voices.
In 2014, the World Health Organization alongside other global health agencies came out in favor of securing “full, free, and informed consent” for medical procedures on intersex infants that could be postponed [PDF]. Several rights groups—including Lambda Legal, the American Civil Liberties Union, Amnesty International, and HRW—have also come out against medically-unnecessary intersex surgeries.
In 2017, three former U.S. Surgeons General wrote in a paper for the Palm Center think tank that “these surgeries violate an individual’s right to personal autonomy over their own future” [PDF]. (Surgery like the gonadectomy Saenz underwent, they wrote, “can generally wait until puberty, when the affected individuals can have a voice in the decision about whether to undergo such a procedure.”)
Last year, the American Academy of Family Physicians adopted a policy against “medically-unnecessary genital surgeries performed on intersex children,” adding that “scientific evidence does not support the notion that variant genitalia confer a greater risk of psychosocial problems.”
That hypothetical risk is often what has been cited to persuade parents of the urgency of normalizing and often cosmetic procedures that make an intersex minor’s genitalia appear more conventionally male or female. Saenz, for example, recalls being told in those two months of doctor appointments that they would “one day be a normal girl so that I can have happy sex with my husband.” They were warned not to tell people so that they wouldn’t be ostracized—advice that Saenz promptly ignored.
“When I was a teenager, I was definitely telling close friends,” Saenz recalls, “and the reality of what actually happened was very, very different from the reality that my physicians presented to me.” (Instead of being rejected, Saenz says, friends thought it was “cool”—and were then outraged to learn what happened.)
SB 201 represents a major step forward for the intersex rights movement, which to date has focused primarily on advocating for change within the medical community itself.
But after decades of activism, such surgeries remain common—even as some physicians become aware of the issue and alter their practices accordingly. (The Pediatric Endocrine Society, for example, now recommends that surgeries “be safely delayed,” when possible in order to give minors time “to be actively involved in the decision making process” [PDF].)
Because there is no nationwide data on the prevalence of these surgeries, as the HRW report notes, there’s no way of quantifying anecdotal reports from clinicians that there has been a decrease—and in the meantime, recent publications in medical journals show that they are still occurring.
Parents, for instance, can sometimes push for medically-unnecessary procedures with such urgency that physicians cannot dissuade them, driven by concerns about their children “fitting in.” Other times, the pressure can come from physicians. A 2018 article in the Journal of Health and Social Behavior for example, analyzed audio of 31 interactions between doctors and parents of intersex infants, concluding that, “while clinicians express caution [about surgery], they also present the surgery as beneficial.”
A bill like SB 201 would pump the brakes on the whole process, delaying surgery until the intersex minor can sign a written statement giving permission. As such, the bill faces pushback form some pediatric urologists who argue that parents should still have final say-so in such matters—an idea Saenz and intersex advocates vigorously dispute.
“Ultimately, a parent isn’t going to be the one living with the decisions that they’re making for their child,” says Saenz. “That child is going to live with them.”
Parents would still be allowed to give permission for surgeries that could not be delayed and were truly medically necessary. Sometimes, for example, surgeries are necessary to allow for urine flow. Surgery to make the clitoris smaller, on the other hand, is often motivated by “cosmetic reasons,” as the HRW report notes.
If the bill passes, it would be a landmark moment for the intersex community.
“I think that having one state is a victory and I want there to be a domino effect afterwards where a lot of other states follow suit,” says Saenz.
Since age 13, Saenz has gone on to live what they describe as “a pretty full and awesome life.”
They have embraced being intersex, as many in the younger generation have, as being “part of our lives,” they say, “part of who we are.” Saenz does the work that they do today because they wants to see those youth given the freedom to make choices about their own bodies—freedom that didn’t seem possible back in 2008.
“I wonder a lot about what it would mean to live in a body that was whole,” says Saenz. “And I think that everyone has a right to that.”