As it stands, there’s a lack of education surrounding intersex babies, as parents are automatically placing their trust in an antiquated medical system.

 

 

Wen Long is nine years old and the shining subject of one of the most interesting short films I have seen in a while. It is made by Dutch director Lara Aerts and is called ‘Girlboymix’. Because that is what Wen Long is: both boy and girl, or what society calls intersex. Wen Long was adopted from China, where she was found on the side of the road. Now she lives in Holland, where her parents have decided not to operate on their child. That may sound self-evident, but it is not. Most children who are born intersex, are medically changed in some way, often straight after birth.

Wen Long thinks this is nuts. Maybe, when she gets older, she will choose one gender over another, but at the moment just being Wen Long is absolutely fine. The biggest problem is the outside world: ‘Some people don’t understand, some people don’t believe me, some people ignore me. I’m so fed up with explaining all the time. And sometimes they don’t even allow me to do that. My teacher at school said that intersex was not a proper topic to discuss at Show and Tell, not suitable for children. They say to me that because I’m not a boy or a girl, I am nothing. But I am not nothing, I am me’. 

Wen Long is not just not nothing, she is part of a very large group most of us know nothing about. Statistics vary wildly about the number of intersex people in the world, but Intersex Human Rights Australia has collated international research and concluded that 1.7% of live births is probably the best number. That doesn’t sound like much, but world-wide, 1.7% of 8 billion people is 136 million.

The same percentage in Australia would amount to 425,000 people. And yet: when have you ever been to an intersex baby-shower or bought somebody a ‘congratulations on your girlboy’ card? The biggest problem is that intersex is often medicalised within an inch of its life. Because we only accept two genders, anything else is considered deviant and wrong and needs to be ‘normalised’. This is why most intersex people are operated shortly after birth.

Doctors decide (often without informing parents properly) that this is the best thing to do. And because ‘it is easier to dig a hole than make a pole’, that often means removing things: a penis, testes, a uterus, as well as ‘zipping up’ labia. Cringe-worthy, those terms, right? Unfortunately, apparently, they are still acceptable in medical circles.

Seven years ago, Marian Smart* gave birth to what the doctor first said was a baby-girl. It had been a long delivery, so when he came back a few hours later and closed the curtain around her bed, she was almost too tired to take in what he was saying. “We really don’t know what you’ve given birth to”, he said, making her feel that she had spawned an alien. “It has half a penis, so it could be a boy. Best we remove that as soon as possible”. It was “easier to dig a hole than make a pole”, he said. Marian found it “disrespectful then, but I was completely overwhelmed and frankly devastated. I had never heard of children who were both boys and girls, or, as the doctor said: ‘ambiguous’. I trusted his judgment and believed him when he said an operation would fix things, make our child ‘normal’.”

 

In fact, in 2016, the Family Court of Australia allowed parents to remove genitalia of a five-year-old, in the full knowledge that this would make her/him infertile. But Australia has no laws protecting intersex children from these kinds of interventions.

 

‘Normal’ is the aim of most doctors, and probably parents too. This is why intersex children are ‘assigned’ a sex and then operated accordingly. Despite the fact that research has shown quite some time ago that there are ‘at least’ 40 distinct intersex variations, most of them not in need of interference at all.

Also, a 2013 German study stated that ‘an exact diagnosis is lacking in 10 to 80% of cases’, which, you would think, would make early intervention not the most prudent move. But in Australia, operating is still common practice. In fact, in 2016, the Family Court of Australia allowed parents to remove genitalia of a five-year-old, in the full knowledge that this would make her/him infertile. But Australia has no laws protecting intersex children from these kinds of interventions.

This is despite the fact that in 2013 the UN Human Rights Council started asking member states to ban ‘forced genital-normalising’ surgery, backed up in 2015 by the Council of Europe. Both organisations now put it on the same level as genital mutilation, a practice that is illegal in Australia. No such luck with intersex yet. The medical profession doesn’t even want to call it that. They use the term Differences of Sex Development, or even worse: Disorders of Sex Development.

According to the users of DSD, intersex is a ‘condition’ of the body, something that should be treated. That is why they think it is acceptable for doctors and parents to decide the sex of a child, and to start altering its body. Despite the fact that there is ample medical evidence that proves that once you start operating, it never stops. One operation leads to another and another, and as a consequence, people often end up infertile, with more chance of cancer, incontinence and osteoporosis. Mental health issues are also a difficulty: suicide attempts are four times as prevalent in intersex people than in the general population. This is partly because of health problems, partly because of the stigma attached to intersex. 

Marian Smart’s child is now a girl. Last week, she had her fourth operation, this time to fix a growth that was the consequence of an earlier surgery. She is incontinent, infertile and both she and her parents are very confused. Marian feels guilty for letting the doctors do their thing, but there is nothing now that she can do about it. She has been warned that her daughter will need hormones soon, and psychological help. ‘If ‘normal’ was their aim, they failed spectacularly’, she says furiously. Her husband wanted to sue, but lawyers told the couple they didn’t have a case. Not here, not in Australia. Advocates are trying to change that, though.

In 2017, Australian and New Zealand intersex organisations published the Darlington Statement. Amongst other things, they champion seeing intersex, or biological diversity, as something ‘worth celebrating’. They want medical interventions stopped, legal classifications ended and legislative protection introduced. More than anything, they strongly promote a stop to genetic discrimination.

That is also something Wen Long would like to see happen. With the support of her parents and film director Lara Aerts she wants ‘Girlboymix’ to be the start of a more enlightened view on intersex people. I think she is a great advocate. A necessary one. Out of the mouths of babes.

 

  

 *Name changed at the request of subject

 

 

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