[This article includes reference to non-consensual surgery and child abuse]
We all grow up with ideas about what makes somebody male or female. Although society is gradually beginning to make space for non-binary people, the myth persists that everyone is born with a body which is clearly and inarguably one or the other. On Intersex Awareness Day, people all around the world whose bodies disprove this myth speak out about what it means to be left out of the story, or to be subject to bodily alterations intended to erase any discrepancy.
Not everybody with a variation of sex characteristics (VSC) identifies as intersex. Some view their differences as simple medical issues which are nobody else’s business, as they have every right to do. Yet they may still face discrimination because of them, or find themselves the subject of public speculation if, for instance, they turn out to be good at sport. To identify as intersex is to assert that such differences have had a significant impact on one’s life experience, and to say – whether publicly or just to a few friends – that they should not need to be hidden, that they should be accepted as a natural part of human variation.
The impact of shame
For most of the past century, intersex bodies have been the subject of such intense public shame that the medical establishment has maintained a climate of secrecy around them. It was not until 2012 that the NHS ended its policy of not telling intersex patients what was ‘wrong’ with them. This was something it could maintain because most of those patients were children. Their parents would be told. Most simply went along with what doctors suggested, immediately buying into that shame. Some resisted the idea of surgery or hormonal treatment for their children, but were then subject to pressure to accept that doctors knew best.
Today, thankfully, the situation is a little better. Whilst it is inarguably the case that some VSCs do necessitate early surgery, for instance because they make it impossible to urinate, doctors in the UK no longer suggest surgery as the default option simply to change a child’s appearance. These surgeries still happen, however, when children are far too young to play a role in the decision-making process themselves, as some parents insist on them. Doctors report that this is most common with fathers who worry that their sons will not be thought of as proper men unless their genitals are made to look more typical.
The UN has denounced this practice, describing it as a serious crime in violation of the Convention on the Rights of the Child. In 2016, the committee which oversees that convention has called on the UK to “ensure that no one is subjected to unnecessary medical or surgical treatment during infancy or childhood,” and to “guarantee bodily integrity, autonomy and self-determination,” but to date – despite research carried out by the UK government’s Equalities Office – intersex children still lack protection under UK laws.
The SNP says that it will “press for intersex people and organisations to be fully consulted by the UK government on changes to the law and policy to introduce effective protections for intersex people’s human rights,” but critics argue that it could provide some protections through the Scottish Parliament and has, to date, failed to do so.
A cultural issue
Part of the reason why it has been difficult to make progress on intersex rights is that they are often conflated with trans rights. Supporters of both point out that what they are ultimately asking for is respect for bodily integrity and letting people make their own decisions, but this point tends to be missed as intersex people find themselves caught in the middle of a hostile debate. The myth about biological sex which was always problematic for people with VSCs has now become a political tool, making it much harder for intersex voices to be heard. Meanwhile, we have an absurd legal situation in which young trans people who desperately want treatment are, rightly or wrongly, denied it, whilst young people with VSCs who do not want the same kind of treatment are subjected to it.
UK authorities are rightly horrified by the ongoing practice of female genital mutilation (FGM), which is still believed to take place occasionally in the UK despite having been outlawed. There is an acknowledged risk of girls being taken out of the country to have it performed on them elsewhere. It is recognised as a cultural practice, yet there is a reluctance to see surgery on the genitals of people with VSCs as the same thing. This is despite a known risk that such surgeries can leave people with lifelong pain, urinary complications and sexual dysfunction. Despite the fact that children who have had vaginas surgically created or extended then need to have them dilated, usually by a parent, on a frequent basis over the following months – a practice which, in any other situation, would be perceived as child abuse, and which can leave people with similar psychological damage.
Looking to the future
Intersex people exist and have always existed. Research increasingly suggests that the vast majority have healthy, functional bodies with no significant increased risk of illness overall. Intersex campaigners argue that where there are medical risks these can be subject to monitoring rather than pre-emptive surgery; similar to how women with family histories of breast cancer are carefully monitored, with relatively few choosing to have their breasts removed early in life just in case.
Depathologising intersex bodies would open up a future in which VSCs were seen as no more socially significant than any other bodily variation. The changes required go beyond medicine and law, however. Scottish schools are looking at introducing awareness of VSCs into sex education, so that children get used to the idea and those who are personally affected don’t feel excluded. Sport needs to find ways of making room for intersex people and not singling out testosterone as a cause of unfair advantage in contexts where it doesn’t do the same for weight or height. And all of us need to make room for new stories about what it means to be human, rather than dehumanising intersex people and altering bodies to fit the one we’ve got.