I weep for Caster: what it’s like to grow up intersex
This is but one story of a confusing and painful childhood in which the truth about a person's body was shrouded in mystery
When Anick was born, something about him was different. “They didn’t really know if I was male or female,” he says. A chromosome test was performed, and since his were XY, it was decided that he would be male.
“They began orchestrating this whole thing of making me look more male,” he says. “So even though my genitalia didn’t look like other boys’ – or girls’ – they thought it would be more appropriate to raise me as male.”
His first surgery – to bring down his testicles from his abdomen – took place when he was four months old. Now 24, he has lost count of the operations since.
Anick is intersex, an umbrella term describing the estimated 1.7% of people born with biological characteristics or chromosome patterns that don’t fit the typical definitions of male or female. His story – one of a confusing childhood in which the truth about his body was shrouded in mystery, for himself and others – sheds light on a little-understood subject.
Last week, however, a ruling on testosterone regulations challenged by Caster Semenya, the reigning Olympic 800m champion, has thrust the subject into the spotlight. The 28-year-old, who reportedly has some intersex traits, wants to “run naturally, the way I was born”. But after undergoing a gender verification test in 2009, the results of which were never released, she was deemed an “athlete with differences in sexual development” (DSDs), including higher-than-normal levels of testosterone.
Semenya, who married her longtime partner Violet Raseboya in 2017, has fallen foul of strict International Association of Athletics Federations’ limitations on her “unfair advantage”. A landmark ruling by the Court of Arbitration for Sport (CAS) last week stated that athletes like Semenya must take hormone suppressants if they want to compete internationally at events between the distances of 400m and a mile.
Semenya has retained her dignity throughout, as have her support team.
Anick, who goes by one name, says: “It brings me to tears thinking about what Caster has to go through. It’s like the world telling her she shouldn’t be allowed to do what she loves because of the way she was born. Why are we allowing discrimination? Because they can’t think of another solution.”
Growing up in Leicester, England, the youngest of three, Anick’s early life was marked by frequent medical appointments that went largely unexplained. By the age of two he had undergone a number of surgeries for hypospadias, a congenital condition in which the opening of the urethra is on the underside of the penis. “It didn’t really work, so I had multiple surgeries by the time I was five to repair it. I had a severe form, so it kind of looked like a vagina.”
His parents were “confused”, he remembers, “and up until the age of five I was going to GPs and specialists to find out what was wrong with me. But no one really had any answers.”
Anick was dressed in boys’ clothes and referred to as “he”. He says: ”In my eyes I was completely normal. It wasn’t until I was growing up and learning about other people’s bodies that the doctors’ visits started making sense to me.”
His external difference was now evident to him, but he had no name or label for what he was, which began to take its toll. “I was very ashamed of my body from a young age, to the point where I’d make my brother or sister guard the door when I was in the toilet if we were outside the house,” he says.
He concealed his difference by avoiding school physical education and ensuring no one ever saw him naked. To everyone outside his immediate family, Anick was just a normal boy. But to this day, he has never been in a relationship and does not identify as any particular sexuality.
At home the issue was scarcely discussed. “It was just: ‘Your body is different. We don’t know why, but it is.’ Medically, it’s been a minefield.” He always wanted a visible condition, not one both unknown and hidden. “It was very confusing growing up,” he recalls. “When you get to sex education [lessons], you don’t learn about different bodies, and when they’d talk about the average penis, I didn’t fit in there. I felt like I was on my own; a medical mystery.”
The distress led Anick, who suffers from depression and generalised anxiety disorder, to repeatedly attempt suicide. At 14, he ended up in hospital after an overdose – an act “directly linked to being in a body I didn’t understand and other people didn’t understand”.
“I overheard one of the nurses say: ‘Well, if I had a body like that, I’d try to kill myself, too’.”
Anick moved to London to study law, and it wasn’t until he was 21 that a doctor finally said the word “intersex” to him. Preparing to have further cosmetic surgery “to fit in”, he chose to speak out, unable to stay silent any longer. “The reaction has been incredible,” says Anick, who works as an activist. “People are like: ‘What is this? Why have we never heard of this?’”
Magda Rakita, 43, who moved to London from Poland for a job at Bank of America in her early 20s, did not feel able to speak openly about being intersex until two years ago. She’d discovered that she was different at 15, when puberty did not arrive as expected.
“The doctor said: ‘You are not a typical girl’,” she recalls. “They were very reluctant to tell me directly what it was.” It came as a shock, of course, “but it also kind of made sense. Some things clicked, that yes, my body is different and I don’t look a lot like other girls. Initially it was reassuring ... but then things started going downhill, because of the way we are treated by the medical establishment as a curiosity.”
The lack of openness around the subject left Rakita in the dark about what future she could expect. Born with internal testes, instead of ovaries, she has been unable to have children. It was her supportive boyfriend who encouraged her to “come out” to the world.
Rakita describes the Semenya ruling as “hugely unfair”, and suggests: “Perhaps our idea of female testosterone levels is wrong. There’s nothing wrong with [Caster Semenya]. But when you’re female you have to fit into the mould and there are some institutions that try to preserve these archaic attitudes.”
Both she and Anick hope to increase understanding of what it means to be intersex. “Other people shouldn’t have a say in changes to your body that are irreversible,” argues Anick. “It needs to be scrutinised and there need to be clearer guidelines involved. Not enough people are talking about it.”
– © Telegraph Media Group Limited (2019)