Intersex

Intersex is a socially constructed umbrella term used to describe naturally occurring variations in anatomy that cause individuals to have biological sex characteristics that are not typically male or female. Such characteristics may be present at birth or develop during puberty. Importantly, being intersex is a natural variation of the human species and is not itself a pathology, although some intersex variations do carry other associated health risks.

While some intersex traits are visible, others are not. Common intersex characteristics include the presence of both ovarian and testicular tissue; a combination of chromosomes, such as XXY and XO, that differ from XX (female) and XY (male); and external genitalia that appear to be male or female but do not match internal sex organs.

Physicians are able to identify some newborns as intersex. However, those with typical male or female external genitalia are often not identified until later in life, mostly at puberty or when having difficulties with fertility. Some individuals are never identified and may not know that they are intersex.

Being intersex is different from being transgender, where a person’s gender identity differs from the sex assigned to them at birth. . An intersex person may develop any gender identity, expression, or sexuality.

Being intersex is more common than most people realize. Experts estimate that between 0.5 and 1.7 percent of the population may be intersex.

Starting in the late 1990s and 2000s, intersex advocates have fought to combat the stigma and social exclusion experienced by intersex people. Because doctors routinely performed surgeries on intersex children to make their bodies to conform to either male or female, the public has been largely unaware that intersex variations exist. Intersex advocates have raised awareness of the human rights violations experienced by intersex people. These advocates have received support from other human rights groups including LGBTQ, children’s rights, disability, and women's rights organizations, as well as the World Health Organization (WHO), in calling for an end to medically unnecessary surgeries on intersex infants and more recognition of and support for intersex people.

History

Intersex people have been acknowledged, and even celebrated, in human cultures through history. The term "intersex" was first used in 1917. Prior to this and for decades after, Western society referred to intersex individuals as "hermaphrodites" or "pseudo-hermaphrodites," terms that are considered offensive today. Before the late 1800s, doctors and scientists paid little attention to intersex variations. Intersex individuals simply existed as they were. Babies who were noticeably intersex were assigned a sex, either male or female. As adults, they were expected to marry and reproduce with the “opposite” sex.

In the late 1800s, doctors began to realize that being intersex was fairly common. They came up with a standard of classifying intersex individuals based on gonadal tissue. After being classified, intersex individuals were assigned a sex, either male or female, and expected to express the corresponding gender. However, physicians began to notice that some intersex patients identified with a gender that differed from the biological sex they were assigned, suggesting that their classification system was faulty.

In the 1920s, the medical community began offering “corrective” surgery to alter intersex people’s biological sex to match their gender. In the 1950s, the Johns Hopkins University became the first medical center to try to eliminate intersex in early childhood by using “normalization surgeries.” These surgeries often removed either the testes or the ovaries, removed internal sex organs, and/or reshaped external genitalia to make children appear to be either male or female. These procedures carried risks of medical complications and often reduced or eliminated the intersex person’s fertility or genital sensation. Although such surgeries may have involved parental consent, the risks and alternatives were not always presented to them, and the child in question had no say.

Known as the “optimum gender of rearing” model, physicians aimed to alter the genitalia of intersex children so that their biological sex would adhere to the gender binary of male or female. Then the children were to be raised as the gender that corresponded with their assigned sex. Because it was easier to surgically create a vagina, most intersex children were altered to appear female. According to the physicians at Johns Hopkins, who were informed by developing feminist theories of gender as a social construct, nurture was more important than nature in shaping gender identity, which they believed could be changed early in life. The children were often not informed of their intersex status.

As the children grew, however, the optimum gender of rearing model proved to be largely untrue. Some patients’ gender identities differed from the biological sex physicians imposed on them during their normalization surgery. Many felt medically assaulted and psychologically traumatized. However, because they felt isolated and feared ridicule, most remained silent. In the infamous case of David Reimer, who was not an intersex child, the infant’s penis was accidentally burned away during a circumcision in 1966. Using genital surgery and hormonal treatments, the doctors reassigned him as a girl and suggested that he be raised female. At first, the reassignment seemed to be successful, and doctors used it as proof that gender identity is learned. However, by the time Reimer was fifteen, he had transitioned back to living as a male. As an adult, Reimer struggled with severe depression and killed himself a few years after his story became public.

Then in 1993, Dr. Anne Fausto-Sterling, a professor of biology and gender studies, published articles about intersex people in national publications such as the New York Times. She argued that two sexes, the male-or-female binary, did not accurately describe the entire population and that the public should recognize the full sex anatomy spectrum. Fausto-Sterling’s articles started a firestorm of controversy, making many people aware of intersex people and the diversity of the sex anatomy spectrum for the first time.

After reading Fausto-Sterling’s articles, intersex activist Cheryl Chase founded the Intersex Society of North America (ISNA). Chase was both a scholar of intersex people and an intersex individual herself. Born with atypical genitalia, Chase underwent genital surgery when she was eighteen months old. Chase was traumatized by the experience, which later caused her to become suicidal and have a nervous breakdown.

Advocacy and Human Rights

The initial mission of the Intersex Society of North America (ISNA) was to gather together members to share their experiences. Its mission was one of support rather than advocacy. Chase was initially able to locate dozens of intersex individuals to become members of the ISNA. Soon, though, the number of members increased substantially and sought reform, making the ISNA an advocacy group.

At first the ISNA received little support from the medical community. Physicians strongly defended their actions, arguing that they were necessary and justified. They even admitted to lying to patients about their medical records in a well-meaning effort to protect them, which is highly unethical.

Chase and other members of the ISNA talked to members of the medical community, to explain the damage caused by the intersex surgeries performed on children. The group held protests and used the internet to spread its message to a wide audience.

In 2006, the Advocates for Informed Choice (AIC; later renamed InterACT), was founded to fight for the human rights of intersex children. The group has continued the advocacy work started by the Intersex Society of North America, which closed down in 2008. Advocates and activists published stories of problematic intersex surgeries. Research was published contradicting earlier beliefs suggesting that gender could be influenced through nurture and could be changed early in life.

Advocates fighting for the rights of intersex people do not want them viewed as medical subjects for study and prefer that they be referred to as “intersex people” instead of “people with a medical condition.” Advocates seek to replace the shame that intersex individuals feel with pride in who they are and seek to counter society’s binary definitions of normal sex anatomy and gender identity. They encourage the medical community to follow a patient-centered model regarding the treatment of intersex people.

In the 2017 report I Want to Be Like Nature Made Me, members of the Human Rights Watch and InterACT reported that doctors continue to perform these medically unnecessary surgeries on minors even though they are controversial. Most of the procedures are irreversible and risk altering a child’s body to reflect a sex that does not align with their eventual gender identity. The surgeries carry other risks as well. For example, operations to alter the size of a child’s genitals can cause incontinence, scarring, and a lack of sensation.

Normalizing genital surgeries were still being performed throughout the United States and in most other countries into the 2020s. Some of these surgeries meet the legal definition of female genital mutilation, or FGM, as part or all of the clitoris and labia are removed. Laws prohibiting female genital mutilation often make an exception for intersex children. Advocates want to change this—and they are not alone. The WHO, the United Nations (UN), and the Council of Europe also seek to ban these surgeries because they violate the human rights of intersex children.

While some progress has been made in banning intersex surgeries performed on children, it has been slow and is not universal. In 2015, Malta became the first country to ban intersex assignment surgeries. It was followed by Portugal in 2018 and the state of Tamil Nadu in India in 2019. Also in 2019, California became the first US state to introduce a bill prohibiting doctors from performing medically unnecessary intersex assignment surgeries on minors; however, the measure stalled in a Senate committee over several legislative sessions. Leading children's hospitals in Chicago and Boston voluntarily ended certain intersex assignment surgeries in 2020. By 2023, some US states had banned gender-affirming care for transgender individuals under the age of 18 but permitted intersex surgeries on infants with ambiguous sex characteristics. These states included Georgia, Kentucky, and South Carolina. In 2021 Germany outlawed non-emergency assignment surgeries and hormonal or other medicinal treatments for intersex children under age fourteen.

Society and Culture

Intersex individuals have faced discrimination, prejudice, and stigma and, except for a small number, have had to struggle with the consequences of an unnecessary genital surgery. At first, doctors told intersex patients that because their variation is rare, they would not be able to connect with other intersex individuals. Based on research published by Fausto-Sterling and others in 2000, however, 1 percent of babies are born with bodies that differ from binary sex in appearance and 1 to 2 percent of babies born receive “normalizing” genital surgery.

People often view atypical sex anatomy as a birth defect or medical disorder, which leads to the perception that these are variations that must be “fixed.” Many physicians continue to refer to intersex variations as “disorders of sex development” or “differences of sex development” (DSD), which some advocates believe implies that intersex variations are abnormalities that doctors need to remedy. Doctors argue that the term DSD was created in consultation with the intersex community and is therefore a valid term.

In some countries, babies born with ambiguous genitals are abandoned or even murdered. Intersex infanticide is a major problem in parts of Africa and Asia as well as in China and Brazil. The selective selection against intersex embryos, either during in vitro fertilization or through selective abortion, has been likened by intersex advocates to genocide.

Discrimination against intersex individuals takes place throughout the world, and many antidiscrimination laws do not prohibit discrimination against intersex persons when they try to access health care, education, and employment.

Some intersex people are ridiculed if they try to change sex markers on birth certificates, driver’s licenses, and other legal documents. Some countries have begun offering a third sex option, such as an X, on official documents, and Austria began including intersex as a sex category on birth certificates in 2020.

Sports is another area in which intersex individuals face discrimination. They are sometimes not allowed to compete on either male or female teams. Female athletes like elite runner Caster Semenya are often disqualified from competitions because they are intersex.

Diagnosis

When a baby is born with ambiguous genitalia, doctors may order chromosomal tests to determine the cause of the infant's intersex variation and whether there may be any associated medical problems requiring immediate attention, such as lack of a urinary opening or the presence of malignant tissue. Conditions associated with intersex variations include the following:

• Congenital adrenal hyperplasia: An overproduction of hormones in the adrenal gland causes female infants to have male genitals.
• Penile agenesis: Male infants are born without a penis.
• Vaginal agenesis: Female infants are born without a vagina.
• Turner syndrome: Female infants have only one X chromosome instead of two (XO).
• Klinefelter syndrome: Male infants are born with an extra X chromosome (XXY).
• Partial androgen insensitivity syndrome (PAIS): cells do not respond fully to testosterone. Patients may have a variety of signs including a very small penis or an unusually large clitoris.
• Complete androgen insensitivity syndrome (CAIS): cells do not respond at all to testosterone. Patients are genetically male but have external female genitals.

Intersex human rights organisations advise that if the condition poses no risk to the child’s health, any surgery performed would be cosmetic and therefore violate the child’s human rights, because the infant cannot consent. Some doctors disagree, believing that surgery is justified, as it allows children to grow up without the stigma associated with being intersex. In either case, parents should be supported in understanding their child’s variation and in making informed decisions about medical interventions and child-rearing. Factors taken into consideration include the child’s human rights, social expectations of gender identity and expression (including the possibility of waiting for the child to express their own gender), and the likelihood that the child will identify with the chosen gender. Assigning the wrong gender could expose the child to the stigma associated with being transgender and its associated health consequences. Research has shown that later in life children with certain intersex variations are more likely to identify as female or male, which may influence the parental decision as to which gender, if any, to choose for rearing.

In some cases, intersex does not become apparent until puberty. Delayed signs of puberty, such as a lack of menstruation, may be a sign. In such cases, there may be no need for medical intervention; however, intersex people should be offered support and fertility counseling, and may require medical intervention so they can continue to develop in a way that is consistent with their gender identity.

Patient-Centered Treatment

Intersex advocates recommend that parents of intersex children be truthful with them and give children copies of medical records as soon as they are old enough to ask for them. Intersex children and their parents should have access to psychologists and social workers. They should be allowed to meet with and talk to other intersex children and their families.

While a newborn should be assigned a gender at birth that most closely relates to biological sex, no surgery should be performed except if it is necessary to sustain the child’s health. Surgeries performed to make a child seem more “normal” based on societal standards should not be done until the child is old enough to make an informed decision.

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