For the average American, the words “genital mutilation” conjure up images of babies in developing countries and of human rights advocates railing against horrors that take place on other continents. Genital mutilation seems barbaric, backwards, and very, very far away. And yet, there is an epidemic of nonconsensual genital mutilation in the Western world that receives little media or political attention.
Every day in hospitals in the United States, on average, a dozen intersex infants are subjected to genital mutilation. These babies are forced to undergo invasive, unnecessary, and damaging surgeries that can haunt them for the rest of their lives, simply because outdated medical protocols insist that only certain types of biological sex characteristics are correct. Intersex children’s conditions usually present no health risks; indeed, the surgery itself is often far more harmful. However, the lack of legal protections for the intersex community means that practices that the United Nations has deemed human rights violations are still commonplace in our hospitals.
Intersex Conditions
To be born intersex is to be born with a body that does not conform to the male-female binary. Brown University professor Anne Fausto-Sterling defines an intersex individual as one who has a mixed set of sex characteristics: their genes, gonads, genitalia, secondary sex characteristics, and hormone patterns do not all fall into the same sex category. For instance, a baby born with de Chapelle syndrome would be intersex, as they would have a traditionally female XX chromosomal makeup and a penis.
There are many common myths about intersex people, including that they are hermaphrodites, suffer health hazards because of their condition, or are always transgender. These falsehoods have created a culture of misunderstanding that stigmatizes intersex children and deprives their parents of the legitimate information they need to make informed healthcare decisions.
Intersex individuals are not “hermaphrodites.” True hermaphroditism—having both traditionally male and female genitalia—is not a condition that exists in humans. Instead, being intersex simply means that one’s sex characteristics do not all match the same binary sex, or that some of them are significantly smaller or larger than average.
Intersex conditions are also not necessarily harmful. A few intersex variations do entail health hazards; for instance, congenital adrenal hyperplasia often results in “salt wasting,” where one’s body is unable to retain enough sodium. However, intersex status usually confers no more significant health hazards than being “dyadic,” or non-intersex. There is nothing inherently wrong with intersex infants, psychologically or biologically. Indeed, as Hida Viloria, chair of the U.S. branch of the Organization Intersex International and an intersex individual herself, stated in an interview with the HPR, “people who haven’t had the surgeries at some point in their lives realize that their bodies are different, and they make do with it, the way everyone does with aspects of themselves that are different. And if they have supportive parents—or even just parents that are typically good parents—they tend to grow up exactly like other children.”
Moreover, intersex people are not necessarily transgender or non-binary. Indeed, many intersex individuals identify as female or male. However, some members of the intersex community are deprived, without their consent, of the opportunity to discover their own gender, of their bodily integrity, and even of their physical health. The Intersex Society of North America estimates that one baby out of every hundred “differ[s] from standard male or female.” Of all these intersex babies, about 10 percent—that is, one for every thousand babies overall—undergo surgery to “correct” their sex.
A Violation of Human Rights
These surgeries are fundamental abuses of human rights. A report submitted to the United Nations General Assembly by the U.N. Special Rapporteur on Torture categorized such surgeries as among “abuses in health-care settings that may cross a threshold of mistreatment that is tantamount to torture or cruel, inhuman or degrading treatment or punishment.” They are medically unnecessary and, moreover, can be psychologically and physically damaging—inflicting mental torment, sterilization, and a loss of sensitivity upon intersex children.
These surgeries are primarily cosmetic and tend not to have any real health benefit. Many actually have significant negative health results: the removal of internal gonads that do not conform to external genitalia can render a child sterile for life, and procedures to “correct” ambiguous genitalia can cause scarring and desensitize organs.
The psychological effects can be similarly harmful. Viloria compared the trauma that intersex children can experience because of such surgeries to the trauma faced by childhood sexual abuse victims, saying, “There’s a constant attention to the genitals that is unwanted, invasive, and creates trauma.”
The surgeries can also create a nightmarish legal scenario years later for adults who realize that they were coercively assigned the wrong gender at birth. Attempts to transition back, to reverse this “irreversible” surgery, can require herculean legal and financial struggles.
Doctors frequently advise parents to provide consent as proxies for these surgeries when their children are very young. Some parents are even told by doctors not to tell their children about their intersex past in order to help them grow up “normally.” Without compulsory disclosure, these children often speak of growing up knowing that something felt wrong without being able to tell what it was. Meanwhile, the stigmatization of the intersex community can make it hard for intersex activists to find parents and provide them with appropriate health information.
Legally, parents are currently allowed to sign for invasive and irreversible medical procedures that can have life-long negative effects on their children. With regard to female genital mutilation, advocates have long held that parents have no right to force their children through such a procedure. In cases of intersex infants, however, the law seems to turn a blind eye to these children’s rights.
Legal Strides
In the last few years, the intersex community has made some significant strides forward around the world and in the United States. Internationally, the U.N. report declaring intersex genital mutilation a human rights issue was hailed as a watershed moment by some activists. And Australia and New Zealand have passed laws that allow individuals to list their sex as “X” on their passports, saving intersex individuals from potentially dangerous situations while traveling.
The German government has enacted a similar piece of legislation, with one important design flaw: doctors can now list an “X” for sex on children’s birth certificates. Many intersex activists actually feel that this law represents a step backwards. Viloria argues that much of the remaining legal and healthcare infrastructure has not been updated with the law and that the law itself now makes it difficult to list babies with ambiguous genitalia as “F” or “M.” As a result, parents now have a greater incentive to perform surgery on infants so that they can receive a dyadic sex marker on their birth certificates and have access to better healthcare.
According to Viloria, the German law essentially created a “requirement of a normalizing surgery.” Kimberly Zieselman, director for advancement at Advocates for Informed Choice, a major intersex activist organization in the U.S., also listed the possible “stigmatizing” or “outing” effect of either leaving the birth certificate blank or listing an “X” as an unintended negative consequence.
In the United States, change has followed a judicial rather than a legislative route. In a potentially groundbreaking case in North Carolina, AIC is helping the adoptive parents of a baby known as “M.C. Crawford” sue the state for performing intersex genital mutilation upon him while he was a ward of the state. Preliminary hearings in the case have been promising, and Zieselman explained that, because the case involved state foster care and a state hospital, the adoptive parents had standing to sue in federal court, thus raising the issue of the constitutionality of intersex genital mutilation. “The right to bodily integrity, the right to privacy, the right to procreate … these are what’s really key,” she explained in an interview with the HPR.
A Time for Change
Legal change is occurring for the intersex community, but not fast enough. Of the 370,000 babies born every day, about 3,700 will be intersex. These children will face immediate discrimination; a significant number of them will soon undergo unnecessary surgeries that violate their dignity and rights as human beings. “The biggest issue for the intersex community is this medically-sanctioned violence,” Zieselman stated simply.
Violaria agreed: “We are facing severe human rights abuses every minute of the day. What we most want, what we all agree on, is to stop the surgeries.”