Chapter six: Intersex

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The term “intersex” refers to a range of anatomical conditions that do not fall within standard male and female categories. They may be the result of variations in an individual’s chromosomes, hormones, gonads, or genitalia. For example, having one ovary and one testis, or gonads that contain both ovarian and testicular tissue, are both intersex conditions. Chromosomal patterns that are XXY or XO instead of XX or XY are also intersex conditions. The genitalia of some but not all intersex individuals are not clearly identifiable as male or female. Intersex conditions may not become apparent until puberty or later, when sterility is an issue. Intersex is not itself a medical condition. It is better understood as a label used to describe biological variety.^[1]

Republic of Philippines v. Jennifer Cagandahan concerned an individual with congenital adrenal hyperplasia (CAH), one of the most common causes of intersex conditions. The body of an XX individual with CAH continues to produce virilizing hormones, resulting in masculine secondary sex characteristics. Jennifer Cagandahan had been registered female at birth but at adulthood identified as male. He filed a petition asking that his name be changed to Jeff and that his birth certificate be altered to reflect the male sex. Although a year earlier the Supreme Court had held that an individual who had received sex reassignment surgery could not change her birth certificate (see Silverio v. Philippines, Chapter 8), in this case a different division of the Supreme Court granted Cagandahan’s petition. The Court relied on the fact that the plaintiff’s desire to change the sex on his birth certificate was the result of a “natural” biological medical condition. The Court acknowledged a role for individual self-identification, stating that it was reasonable to allow an intersex individual to determine his or her own gender as his or her body matured.

One of the most prominent issues facing intersex individuals is genital normalizing surgery, especially when performed on infants and young children. A surgical approach to intersex conditions was first adopted in the late 1950s and 1960s and became standard in the 1970s.^[2] It reflected the belief that “sexual identity is a function of social learning” and that children whose “genetic sexes are not clearly reflected in external genitalia” could be successfully raised as members of either sex.^[3] American pediatric guidelines advised surgery if an infant was born with a penis less than a certain size or a clitoris larger than a certain size.^[4] Surgery is typically feminising; for example, it reduces the size of a clitoris, transforms a penis into a clitoris, or creates a vagina (vaginoplasty). Organisations like the Intersex Society of North America, and some legal scholars and members of the medical profession, object to genital normalising surgery on infants and young children on the grounds that it is usually medically unnecessary, is often performed without the fully informed consent of the child or parents, and poses severe risks for sexual and reproductive health.^[5] Furthermore, an intervention that surgically causes an individual’s genitals to resemble standard male or female genitals does not influence that person’s hormones and chromosomes, and these may or may not be consistent with his or her surgically-altered genitalia. As the ISNA states: “Genital “normalizing” surgery does not create or cement a gender identity; it just takes tissue away that the patient may want later”.^[6]

Medical and legal scholars have documented instances of individuals who were subjected to genital surgery as infants or children and who later rejected the gender identity to which they had been surgically assigned. The most famous case involves a child born male whose penis was severely burned during circumcision. He was then raised as “Joan”, after surgery had removed his penis and fashioned a vulva. As a teenager, “Joan” rejected her female assignment; as an adult, he lived as a man, married a woman, and was the stepfather to his wife’s three children. He later underwent female-to-male sex reassignment surgery.^[7] The individual, whose real name was David Reimer, committed suicide in 2004.^[8]

In re Völling is an example of an individual who was subjected to sex reassignment surgery without full knowledge or consent. Christiane Völling was raised as a male and at puberty had developed male secondary sex characteristics. During a routine appendectomy, doctors detected a uterus, fallopian tubes, and ovaries, but no testes. A chromosomal analysis revealed the female XX pattern, but this was not disclosed to the plaintiff. Instead, the plaintiff was informed that she was “60 percent” female and that she had the presence of both male and female internal sex organs. When she was eighteen, all her intra-abdominal female sexual organs were removed and no male sex organs were discovered during the operation. The plaintiff was in fact female in terms of her gonadal tissue and chromosomes. Physicians concluded that she was probably assigned to the male sex at birth and developed secondary male sex characteristics because she had an androgenital syndrome or an adrenal gland tumor, both of which can produce excessive male hormones in individuals who are chromosomally female.

The Regional Court of Cologne found for the plaintiff. It concluded on the evidence that the plaintiff had not been informed that surgery would remove “normal female anatomy”. Rather than “corrective” surgery, to “adapt and maintain one of two present sexes”, the surgery caused a “complete removal of organs from the only present and organic sex”. Furthermore, the treatment records made no suggestion that the plaintiff faced an acute health risk that required immediate and irreversible surgery. She was awarded 100,000€ in damages.^[9] In the United States, by contrast, actions to seek legal redress have generally been unsuccessful because the medical profession has not reached agreement on what approach to intersex conditions is appropriate.^[10]

In a series of decisions, the Constitutional Court of Colombia elaborated standards for informed consent to genital normalizing surgery. In Sentencia T-477/95, the Court considered the case of a teenager who had been accidentally castrated as an infant and then subjected to sex reassignment surgery and raised as a girl. When the teenager learned about the operation, he sued the doctors and the hospital. The Court ruled that the sex of a child could not be altered without the child’s informed consent. Sentencia 337/99 involved an eight-year old child who had male (XY) chromosomes but was raised as a girl. Due to an inability to synthesise testosterone, the child had ambiguous genitalia. Doctors recommended surgery to create a clitoris and vagina and remove the child’s gonads, but would not proceed with the surgery because of the judicial requirement of informed consent. The mother then brought suit to compel the hospital to accept her consent in place of the child’s.

The Constitutional Court held that the mother’s consent could not be substituted for the child’s in this case. Under Article 16 of the Constitution, an individual had the right to free development of personality, which included the feeling of belonging to or identifying with a particular sex. The child’s informed consent was required; but in certain situations parental consent could be substituted, if consent was informed, qualified and persistent. In cases of genital normalizing surgery, the need for parental consent diminished with age. The need to protect the right of free development of personality was greater in the case of an eight-year old child, who had already become aware of his or her genitalia and was better able to define his or her own gender identity; as a child grew older, his or her autonomy increased and deserved increased protection. The Court concluded that surgery on children above the age of five should be postponed until the child could consent for itself.

In Sentencia T-912/08, the Constitutional Court applied its earlier reasoning to hold that parental consent could not be substituted for that of a five-year old child. Here it held that the child and parents had to be fully informed about the surgery, its implications and risks. Once all the facts were known, the child and the parents together could give joint consent. But if the child’s decision did not accord with that of the parents, then no surgery could be performed until the child had reached the age of majority and could make an independent decision.

Whether individuals with intersex conditions should be included under non-discrimination laws is a matter of controversy. For example, the Intersex Initiative website states:

The vast majority of people born with intersex conditions do not view “intersex” as part of their identity. In fact, many people would not even describe their condition as “intersex,” as they feel that they simply have a medical condition, like congenital adrenal hyperplasia or androgen insensitivity syndrome, and not “intersex status.” Its inclusion along with “lesbian, gay, bisexual and transgender” further spreads the inaccurate perception that “intersex,” like “lesbian, gay, bisexual and transgender,” is an identity group.^[11]

By contrast, the Support Initiative for People with atypical Sex Development (SIPD) describes the significant discrimination and stigma that people with intersex conditions face in Uganda. SIPD works towards “the realisation and protection of human rights for this minority population”.^[12]

An example of discrimination affecting intersex individuals is the refusal to issue birth certificates to infants with ambiguous genitalia. In Muasya v. Attorney General, the High Court of Kenya heard a case concerning Richard Muasya, an intersex individual in prison. Muasya had never been issued a birth certificate or identity card, had left school at an early age, and had been convicted of robbery with violence. Because he was intersex, he was held in a cell at a police station pending trial. When sentenced, he was sent to a male-only prison, where he was subjected to invasive body searches, mockery and abuse.

The High Court found that the fact that Muasya had not been issued a birth certificate did not constitute discrimination or lack of legal recognition. It also held that the Constitution should not be interpreted to include a third gender. Rather, intersex individuals fell into the category of male or female, according to the appearance of their genitals at birth. Intersex individuals did not belong in the category of “other status” under Article 26 of the ICCPR. However, the Court found that Muasya’s treatment while in prison amounted in inhuman and degrading treatment, contrary to the Constitution and the UDHR, and he was awarded damages. At the time of publication, Muasya was appealing the decision.^[13]