The concept of ‘diverse sex development’ is more commonly known as ‘intersex’ and covers a range of people born with a reproductive or sexual anatomy that doesn’t fit typical Western definitions of ‘male’ and ‘female’. There are over 40 variations of sex characteristics which fit the definition of ‘intersex’. The one most commonly understood is a child born with genitalia that are not easily categorised as male or female. People may live their lives without knowing they have variations in their sex characteristics. Those who do know typically identify as either female or male – only a small proportion actually see themselves as intersex.
The medical community shifted to using the term ‘disorders of sex development’, but this term is problematic as it implies that difference is a medical problem. The terms ‘diverse sex development’ or ‘variations of sex characteristics’ are often preferred, allowing intersex bodies to be seen as normal manifestations of physical diversity.
Mani Bruce Mitchell (they/them/Mx) identifies as intersex, non-binary and queer. Born in 1953 in rural New Zealand, Mani was assigned male as a baby, and subjected to a number of significant surgeries as a child. Mani decided to live openly as an intersex person in 1996, and has since been the public face of the intersex community in New Zealand. In 2003 a documentary based on Mani’s life, Yellow for hermaphrodites: Mani’s story, was screened on New Zealand television. Mani trained as a teacher and counsellor, and from the 2010s was executive director of the Intersex Trust Aotearoa New Zealand.
Numbers of intersex people
The proportion of intersex people in the population depends on which variations of sex characteristics are included, and whether a specific variation is noticed, but conservative estimates are one in 5,000. If all variations of sex characteristics from birth are taken into account, the proportion could be as high as one in 100. In the 2010s, Intersex Trust Aotearoa New Zealand suggested that there were approximately 2,000 intersex people in New Zealand. In 2021, Statistics New Zealand began a project to improve the gathering of statistical information about intersex and gender-diverse communities, with the assistance of Intersex Trust Aotearoa New Zealand.
In the 1950s, specialists at Johns Hopkins University in Baltimore, USA, suggested that the psychological wellbeing of a child depended upon a stable gender identity, which should be fixed by the age of 18 months. It was also assumed that the child’s body should fit their gender. Those born with ‘ambiguous’ genitalia were given surgery so that their genitals more closely fitted into the category ‘male’ or ‘female’– often without the parents being fully informed, and always without the infant’s consent. In most instances, this surgery was not medically necessary. In some cases, surgical procedures on babies resulted in many follow-up surgeries being needed. Many people, including many intersex people who were given surgery as children, now argue that the surgery should have been delayed until the individual was old enough to decide for themselves whether they wanted it.
Outcomes for medical interventions
Research has shown that children who grow up with ambiguous genitalia, or who make their own decisions about surgery later in life do not, on average, fare worse than other children. However, those who were subjected to early surgery and were not informed about their sex variations often experience difficulties in later life. For example, some aspects of physical development may not occur as expected. Someone raised as a girl may not develop breasts because their hormone levels are not typically female. The support group Intersex Awareness New Zealand has campaigned against surgery being carried out on children with sex variations who are too young to provide informed consent.
Boy or girl?
Congenital adrenal hyperplasia (CAH) can ‘virilise’ girl babies in the womb, so their genitalia appear male. When one New Zealand woman gave birth in the late 1970s, a delivery-room staff member announced, ‘It’s a boy!’, and then another said, ‘It’s a girl!’ ‘And then they went quiet,’ recalled the mother. ‘I had a look and said, “Is it a boy or a girl?”, and my doctor just said, “I don’t know.”’1 Tests showed that her baby was female, with CAH. The woman later had another baby who appeared clearly male, but was also found to be a girl with CAH. Both girls had surgery on their genitals to make them appear more female, while they were still babies.
The New Zealand-born psychologist and sexologist John Money pioneered theories of intersex identity and treatment during his career at Johns Hopkins University. He gained an international reputation for his work on intersexuality and invented the now widely used terms ‘gender identity’ and ‘gender role’. Money became a highly controversial figure after one of his patients, whose penis was irreparably damaged during a medical procedure at the age of eight months, was on Money’s advice given surgery to remove his testicles and raised as a girl. Money made the child and his twin brother perform ‘sex rehearsal play’ and have ‘genital inspections’. The patient later died by suicide, as did his twin two years later. Money was accused of having falsely reported that the case was going well.