This text includes testimonials about sexual and obstetric violence.

☛ Cette enquête est aussi disponible en français [➦].

Translated by Florence Bois-Villeneuve. 

“Once we operate, there’s no going back.” That’s what the surgeon said to validate the decision made by Sasha’s parents, who opted against putting their intersex child through surgery or hormone therapy. Sasha, who was born with a combination of male and female sex characteristics, will make his own decisions about his body later on in life.

An end to non-consensual surgery on children with “genital ambiguity” is precisely what many intersex people are demanding (Bastien Charlebois, 2017). Because not everyone is as lucky as Sasha. Indeed, many intersex people have operations during childhood to make their body unambiguously “boy” or “girl.” And many suffer, both physically and psychologically, from these irreversible procedures.

To this day, in Canada and most other Western countries, intersex youth continue to go under the knife. Doctors are still performing these surgeries, which they claim correct the “abnormal genital development.” In some cases, intersex children also end up on the operating table because their parents have asked the medical team to make their body “normal.” And this is still happening despite human rights organizations declaring surgery on intersex children to be genital mutilation, tantamount to excision.

“My body’s nobody’s body but mine!”
While many people are speaking out against the body modifications forced on intersex children, some doctors continue to ignore their concerns. An access-to-information request made to the Régie de l’assurance maladie du Québec (RAMQ) by Manon Massé, in collaboration with Janik Bastien Charlebois, revealed that procedures continue to be performed in Quebec on youth under the age of 14 “who present with a variation in sexual development.”

Between January 1, 2015, and January 31, 2020, 838 surgeries were performed on intersex children under the age of 2, and 547 on children between the ages of 3 and 14. That means more than a thousand young people were deprived of the opportunity to give their voluntary and informed consent to have surgery or not.

According to Janik Bastien Charlebois, professor of sociology at UQAM, who has done studies on intersex and published several articles on the subject, the vast majority of surgeries done on intersex children are not essential to their survival or well-being. On the contrary, these procedures hinder their development.

“There is always a risk when you take a scalpel to that part of the body, and it’s always an act of violence when the person is non-consenting,” he said in an interview with Les 3 sex*.

And there’s a long list of possible complications, according to numerous testimonials by intersex people: infections, incontinence, infertility, loss of sensation, pain during sex, inability to reach orgasm, osteoporosis, psychological distress, post-traumatic stress, suicidal ideation, etc.

These testimonials are backed by scientific studies. The majority of participants in the study by Jones et al. (2016) who underwent surgery during childhood reported suffering from physical health problems (poor healing, infections, loss of sensation, loss of bone density, etc.). The participants’ psychological health was also affected by the surgeries. “Several individuals had experienced extreme trauma and anxiety in medical settings due to receiving these interventions without consent. A few people (also) experienced the treatment processes as sexual abuse,” the authors describe.

It would appear these surgeries performed on non-consenting individuals also have repercussions on sexual health. According to a study by Crouch et al. (2008), clitoral hood reductions performed in childhood are significantly associated with pain during vaginal sex in adulthood. People who have undergone these surgeries report a lower frequency of sexual activity than intersex people who have not undergone surgery. Many also suffer from loss of sensation in the clitoris and anorgasmia.

Minto et al. (2003) obtained similar results regarding loss of sensation and difficulty achieving orgasm. In addition, this study identifies relationship issues related to sexual problems, including avoidance and communication issues.

Medical procedure or mutilation?
Because most surgeries on intersex children involve significant risks to their physical and psychological well-being, the UN, Amnesty International and Human Rights Watch consider them to be human rights violations. The UN calls on governments to introduce laws prohibiting “surgeries and other treatments performed on intersex children without medical necessity.”

In Canada, there are no laws to protect the bodily integrity of intersex children. Section 268 (3) of the Criminal Code, which prohibits genital excision and mutilation, contains exemptions that protect doctors who perform surgery to “normalize” the bodies of children with “genital ambiguity”:

“For greater certainty, in this section, “wounds” or “maims” includes to excise, infibulate or mutilate, in whole or in part, the labia majora, labia minora or clitoris of a person, except where:

(a) a surgical procedure is performed, by a person duly qualified by provincial law to practise medicine, for the benefit of the physical health of the person or for the purpose of that person having normal reproductive functions or normal sexual appearance or function.”

Janik Bastien Charlebois points out that having these exemptions removed from the Criminal Code is currently the main focus of intersex activists and their allies in Canada. Last June, Egale Canada filed an application with the Ontario Superior Court of Justice challenging the constitutionality of these exemptions.

“More and more jurisdictions around the world are recognizing that genital mutilation of intersex infants and children constitutes a major human rights violation. Both Canadian and international law guarantees every person the right to bodily integrity and autonomy - it’s time to recognize that this applies to intersex people, too,” said Jennifer Klinck, the lead lawyer on the case, as reported in an Egale press release.

Just like any other child
We don’t know the exact number of children who are born intersex, which the UN defines as having “physical sex characteristics (such as sexual anatomy, reproductive organs, hormonal patterns and/or chromosomal patterns) that do not fit typical definitions for male or female bodies.” According to an article published in the American Journal of Human Biology in 2000, intersex people would account for 1.7% of the world’s population, or the same proportion as children born with red hair.

Despite millions of people around the world being born intersex, the subject remains misunderstood and taboo. Laura G., a pediatric social worker who asked that her place of work remain anonymous, tells how she recently worked with a family whose infant presented with what the medical team described as “genital ambiguity.” The parents were shocked, saying they had never heard of it before. They even put off announcing the birth to their families for fear of having to answer the age-old question: “Boy or girl?”

The baby in question had to stay in hospital for a week to undergo a battery of tests, which doctors claimed were needed to check the baby’s urine flow and make sure all internal organs were working properly. During that week, the social worker tried to address the issue of gender and body diversity with the medical team and the parents. However, both the doctors and the parents seemed more concerned with determining the infant’s “true” sex.

Sasha’s parents, who, as you will recall, chose not to have their child operated on, may have had the same reaction had they not stumbled across websites and documentaries on the subject of intersex after Googling “abnormal genital development” (the term used by the geneticist to describe their child’s difference). Testimonials from intersex people denouncing the non-consensual body modifications they underwent as children convinced them to let their child make his own decisions about his body later on.

Since there are few resources for parents of intersex children, Sasha’s parents created a Facebook page called Bébé intersexe en France, in the hopes of connecting with other families in the same situation. They share photos of Sasha on the page as a way to present intersex in a positive, beautiful way (unlike most articles and documentaries on the subject). “You can see he’s a happy child,” explained Sasha’s father, Christophe, in an interview with Les 3 sex*. “In a park, you could put an intersex child in with the other children, and no one would realize that he [or she] is intersex. Sasha is just like every other kid: He throws a tantrum when he doesn’t want to eat his vegetables!” Finally, their Facebook page aims to break the silence that still too often surrounds intersex children. “There are some parents who decide not to have their child operated on, but no one talks about it. It’s still taboo,” Christophe concluded.

Well-intentioned... but ill-informed
It may seem surprising that parents would allow their children to undergo surgery simply to make them fit the gender binary. According to social worker Laura G., these parents generally mean well, that is, they believe their decision is based on their child’s best interest. However, many of these parents are not in possession of all the information they need about the potential risks of these surgeries, effectively preventing them from making an informed decision.

According to Janik Bastien Charlebois, the problem is partially due to the “fragmentation of intersex into several different syndromes.” Instead of telling parents that their child is intersex, doctors use pathologizing terms like “disorder of sexual development,” leading some parents to believe their child’s condition requires medical care and surgery.

This is the story told in a France TV report entitled Mö, maltraité.e par le corps médical. In it, we meet Mö, a person diagnosed with “pseudohermaphroditism” (the old term for intersex). Mö was assigned female by the medical team three weeks after birth. During her first year of life, she underwent removal of her ovotestes (gonads containing both testicular and ovarian tissue), reduction of her micropenis to resemble a clitoris, and a vaginoplasty. At the age of 15, Mö underwent another clitoridectomy: “They took away my ability to feel pleasure with my clitoris.” To make her vagina “penetrable,” doctors stretched her vaginal canal with dilators, repeatedly, throughout her childhood. “It was rape, over and over,” accuses Mö. Mö’s parents were never told by the medical team that their child was intersex or that the gonads were removed; they were only told that there was a defect. “They fucked up my relationship with my parents [...]. [...] My parents will blame themselves until the day they die,” says Mö.

Janik Bastien Charlebois believes more support and resources are needed for parents of intersex children. They also need to be informed about the risks associated with gender-normalizing surgeries. If Janik could give them some advice? “Love your child. First and foremost. A child whose autonomy is supported will feel fulfilled.” Sasha’s parents agree: “You need to accept your child as he [or she] is and let him [or her] make his [or her] own choices. It’s also important to remember that there are far worse things than being born intersex. It’s not a disease.”

Medical confidentiality
In recent years, the medical profession has seemed more reluctant than before to openly defend the practice of surgery on intersex children. Is this a sign of discomfort or progress? If we are to believe the few doctors who have spoken out in the media recently (for example, pediatric endocrinologist Dr. Lyne Chiniara in a report on Radio-Canada), these non-consensual operations on minors are virtually non-existent in Quebec hospitals. Yet, the RAMQ figures mentioned above seem to indicate that they still happen.

To unravel this mystery, Les 3 sex* requested interviews with more than 30 urologists, pediatricians, endocrinologists and surgeons at CHU Sainte-Justine, the Montreal Children’s Hospital and CHU de Québec-Université Laval. Several refusals later, we finally received an email from endocrinologist and professor Cheri L. Deal: 

“Although I left Sainte-Justine a year ago, I can tell you that, even before I left, I was happy to see that we’ve come a long way in our basic understanding of sexual development/gender identity, our sensitivity to the needs of families and people living with differences, and how we care for these individuals. Here’s hoping things will continue to change, not only in the medical world, but in Quebec society as a whole.”

An evasive message to be sure, but at least somewhat more compassionate than a statement she made to Le Devoir in 2013: “When I hear intersex advocacy groups say that we shouldn’t touch these children’s anatomy and that we should wait until they can decide for themselves as adults, we don’t realize the consequences of that attitude on the parent-child relationship, which will have impacts on the child’s psychological development. It’s not as simple as these people make it out to be. This attitude can have many repercussions.” Unsurprisingly, Dr. Deal did not respond to our follow-up email asking whether she still believed that “normalizing” plastic surgeries should be performed, or whether she would instead like to recant her statement.

We received another evasive and “politically correct” reply from Florence Meney, assistant to the director of communications at Hôpital Sainte-Justine: “While we are unable to grant you an interview at this time, we wish to emphasize that the well-being of all children is a priority for CHU Sainte-Justine. Our medical teams are actively examining best practices in this area, as well as ways to continue to provide meaningful support to children. Basic knowledge of sexual development and gender identity has evolved significantly in recent years, as has our sensitivity to the needs of people and families living with differences and our treatment approach. We are continuing to evolve in that direction.”

While this statement is meant to be reassuring, the implication that Sainte-Justine has not yet banned non-vital surgeries on the genitals of intersex children and does not appear to have a clear position on the matter is cause for concern. What’s more, in reading between the lines of this email and Dr. Deal’s email, some people may even conclude that the medical profession is refusing to take responsibility for these surgeries, instead placing the onus for evolving on “society.” And yet, people can’t know what goes on inside hospital walls if the care teams refuse to talk about it. In other words, the lack of access to information, coupled with the lack of education about intersex, prevents social mobilization, which in turn could lead to changes in the rights of intersex people.

Fortunately, there are doctors who openly defend the bodily integrity of intersex children. This is the case, for example, of pediatric surgeon Mika Venhola, who refuses to perform non-consensual surgery and urges his colleagues to do the same. “Why operate on the body of a healthy child when the real problem is in the adults’ heads?” he asks.