Crystal Hendricks at the National Intersex Engagement in December 2017. (Credit: Lungile Maquba)

“So at the age of about 15 you’re supposed to have gotten your menstrual cycle. In my case that did not happen,” Crystal Hendricks paused. The young woman from Cape Town is bravely telling her story to a room filled with people including gender activists and government representatives in a Johannesburg conference room last December.

She said that after visits to the hospital and numerous scans and tests, doctors gave Hendricks’ family unexpected news about their teenage daughter. “The message I got was that [the doctors said] your daughter doesn’t have a uterus or fallopian tubes. She only has under-developed ovaries and they might be cancerous.”

She was rushed into surgery to remove the potentially cancerous ovaries and was put on hormone treatment in the absence of oestrogen-producing reproductive organs.

But it was only at the age of 22, after she started working and had access to a medical aid – and private doctors – that Hendricks was told the truth about her operation; and body. Tests revealed she was intersex, born with XY chromosomes of a male but the external genitalia of a female. She also learnt that seven years before, doctors had not removed ovaries but internal testes.

She said she then realised she’d been lied to since her operation at age 15. Her parents were unwilling to talk openly about her treatment and she does not know if they knew the tissue doctors removed was testicular and not ovarian. “You live with that lie for years before you get a proper diagnosis. You feel this shame of ‘intersex’ – you don’t even want to mention the word,” she said. “Because it was a hush operation. And [it felt like] no-one should speak about this.”

Even if the operation would be to her benefit, reducing the risk of the tissue becoming cancerous, she said she was denied the right to decide and to even know the truth about what was being done to her body.

Prevalence of intersex traits

Despite the fact that roughly 1.7 percent of people are born intersex, according to Intersex South Africa, Hendricks said people like her are not spoken about and are treated as if they “need to be fixed” through medical intervention.

Being born intersex means being born with sex characteristics that fall outside the traditional binary of male or female with wide variants that have been pathologised and given medical terms. But what Hendricks is trying to emphasise is that being intersex is not a medical condition. She said repeatedly that she, an activist, and her colleagues are normal human beings and should be treated as such. The belief that there is something wrong with them allows the perpetuation of what many intersex infants and children routinely undergo in South Africa currently: IGM.

Joshua Sehoole, from Iranti, a media advocacy organisation advancing the human rights of queer people, said these IGM procedures are “non-consensual, medically-unnecessary, irreversible cosmetic genital surgeries and other harmful medical treatments that wouldn’t be considered for other children without evidence of benefit.”

“They are justified by societal and cultural beliefs [rather than scientific evidence],” he said.

Hendricks waited almost a decade to find out the truth about the surgery she underwent. But for many other intersex people in South Africa the search for the truth lasts even longer and they hardly remember, if at all, the surgeries conducted on their bodies.

Confusion about medical interventions

Tebogo Makwati said he lived with an uneasy feeling for years without answers. He had a scar on his abdomen and his family refused to give him answers, or truthful ones at least. He was told he was sick as a baby and “that was it”. Similar to Hendricks, when he started working and had the resources to investigate the matter for himself, he was able, at the age of 21, to uncover what had actually happened when a private doctor told him about the surgery he had undergone while too young to remember. It was only then, decades later, he discovered he was intersex. Makwati declined to give details on the nature of his surgery.

He said this culture of secrecy made it difficult for him to come to terms with his identity and “come out” publicly as intersex. Now, as an activist, he tells his story to pave the way for others struggling to find answers.

“My parents still don’t really want to talk about it,” he sighed.

Deputy Minister of Justice John Jeffrey also spoke at the December engagement. “There’s no doubt intersex people face appalling stigmatisation and discrimination as children and adults,” he said.

He said his department is open to finding ways to protect the rights of intersex people, including their right to choose to undergo medical treatment or not. He said, in law, this usually equates to allowing someone to reach the age of least 14 years and then decide for themselves if they want to receive treatment. But he urged civil society and others to come forward with solutions to work with government.

Sanctioned by the Health Department

Although medical professionals and the Department of Health (DoH) were invited to the intersex dialogue they did not attend. When Health-e asked if the DoH had any plans to ban these medically unnecessary surgeries, which happen under their watch and with their blessing, Popo Maja, departmental spokesperson referred us to a specialist working on gender-alignment surgery in the state sector.

Dr Kevin Adams, senior specialist plastic surgeon at Groothe Schuur Hospital and the Red Cross Children’s Hospital in Cape Town said that while gender-alignment surgeries on infants are still common practice in many state facilities, “this is largely based on tradition and not scientific evidence”.

“The issue is a complex one. Personally, I try engage with parents to avoid surgery but I come from a different generation [he is 50] and the truth is that many of my older colleagues disagree with me,” he said.

Part of the problem, he said, is that individual doctors have a lot of decision-making power, and, if they are convinced it is the right thing to do – as many are – they are able to in turn convince parents to give consent.

According to Adams, “once you do a surgery it is near impossible to undo that surgery so it is always, always, better to wait and not to rush into any decision”.

Protecting intersex human rights

“But if we saw these patients as part of inter-disciplinary teams, involving social workers, psychologists, psychiatrists and others, I think we would see less of these surgeries – and less of their negative consequences,” he said. “The more professionals involved the more likely we are to make the right decision and the more likely we are to defend patients’ rights.”

IGM is condemned by many international human rights bodies and organisations including the United Nations (UN). A 2013 UN special rapporteur on torture report noted that children “who are born with atypical sex characteristics are often subject to irreversible sex assignment, involuntary sterilization, involuntary genital normalizing surgery, performed without their informed consent, or that of their parents, ‘in an attempt to fix their sex,’ leaving them with permanent, irreversible infertility and causing severe mental suffering”.

Dimakatso Sebidi, a self-proclaimed “proud intersex woman” spoke of the mental torment of undergoing seven years of surgeries and treatment as a very young child. She often wondered what was wrong with her and believed she must be “really, really sick”. As an adolescent “because you don’t understand your identity” and no-one would discuss it openly with her, she suffered emotionally. Although she has even been suicidal at times, she credits God and activism for the strength she found to tell her story – for the first time in the presence of her father.

“Now I’m left taking medication [as a result of the early treatment] and … still no-one wants to talk about intersex, but we exist,” she said.

All cases are different but in all cases the actual people affected have little say in what is done to their bodies. In many cases, doctors hide the truth from families, families hide the truth from their intersex relative, and intersex people are left to wonder about who they are, and what happened to their bodies, for years.

“No-one has the right, whether your parents are informed or not, to make a decision about that child’s body when they are born,” Sebidi said, appealing for government to take action to stop practices like those that she endured.

“There’s nothing wrong with us and we are beautiful.”

An edited version of this story was first published by the Daily Maverick