‘The I in LGBTI stands for invisible, ignored’

Limited knowledge of what it means to be intersex has fostered a sense of shame

Crystal Hendricks and her sister have lived in the same three-bedroom house for more than 30 years. But it was only a few months ago that the siblings finally spoke openly about something they had struggled with all their lives: they are both intersex.

“For all our lives we never spoke about it. Never,” says Hendricks.

Intersex is defined as a “general term used for a variety of conditions in which a person is born with a reproductive or sexual anatomy that doesn’t seem to fit the typical definitions of female or male”, according to the Intersex Society of North America.

“A person might be born appearing to be female on the outside but having mostly male-typical anatomy on the inside. Or a person may be born with genitals that seem to be in between the usual male and female types — for example, a girl may be born with a noticeably large clitoris or lacking a vaginal opening, or a boy may be born with a notably small penis or with a scrotum that is divided so that it has formed more like a labia. Or a person born with mosaic genetics, so that some of her cells have XX chromosomes and some of them have XY.”

Johannesburg-based paediatric endocrinologist Professor David Segal says it is estimated that one in 1000 people in South Africa are born intersex, one of the highest prevalence rates in the world.

Yet intersex people face a “multiplicity of discriminations”, says a report by the transgender and intersex rights organisation Irantiorg. Discrimination emanates from “various social and religious norms, which seek to ‘correct’ their bodies in accordance with binary norms”.

A general lack of information on what it means to be intersex results in parents being over-reliant on medical professionals and the decisions they make in relation to the children’s bodies.

It also results in a child’s intersex variation being shrouded in secrecy. Thus children don’t talk about being intersex and don’t understand its implications.

“In short, there is a culture of secrecy around being intersex, which fosters a sense of shame. A lot of the misinformation ... often means that intersex children and their families understand their bodies as abnormal and shameful,” Iranti-org notes.

Hendricks remembers how, as a 15-year-old, after regular visits to doctors to find out why she was not menstruating, it was recommended that she undergo surgery. Doctors had told her parents that she had undeveloped ovaries and no uterus or fallopian tubes. This, the family was told, posed a risk of Hendricks developing cancer.

“I was scheduled to go for surgery and, before going into the ward, the doctor told me to pull the robe I was wearing over my head. I did it because, of course, I trusted him. It was then that I heard the clicking of cameras. It turns out he had asked some medical students to come in and take pictures of me,” she says.

Hendricks never returned to the hospital despite being put on hormone therapy after the surgery and needing follow-up visits.

“I never went back to that hospital. I refused,” Hendricks says. “I always felt like they were doing it for themselves and their research. I felt like a science project for them.”

So humiliating was her experience that it took her seven years to see a medical professional again. It was then that she was told she is intersex.

“I always say that what I went through taught me how to lie. I wanted to be seen as normal so badly that I would do things like carry tampons around so that, in case my friends were maybe looking for an extra one, I could say, ‘here, I have an extra one’. I lied to appear just like them.

“So, once I found out and came to terms with it, I had to go back to so many people, saying: ‘This is who I am; I’m sorry that I lied but that was just my coping mechanism’,” says Hendricks, who is a member of the recently established intersex rights advocacy group, Intersex South Africa (Issa).

In the hope of lifting the shroud of secrecy — and to address the difficulties faced by intersex people — a national dialogue was held in Johannesburg in December. The conference was put together by Issa, Iranti-org, the department of justice and constitutional development and the Foundation for Human Rights. Participants included government representatives, activists and medical and legal professionals.

Iranti-org’s Jabu Perreira says the meeting was “about breaking the silence — the taboo aspect” of being intersex. Speaking at the conference, Deputy Justice Minister John Jeffery said: “There is no doubt that intersex people in South Africa face enormous stigma.”

According to Iranti-org, the difficulties faced by intersex people include amending the gender marker on their identity documents, pathologisation (treating intersex as though it is a medical condition) and human rights violations in medical settings.

“These issues have to be spoken about,” says Pereira. “So many children are affected by this silence. Families don’t understand what it means to be intersex and this is exacerbated by a medical sector that enforces male-female binaries in families. Doctors project shame on to intersex bodies and this is, of course, coupled with cultural issues.”

Tshego Phala, an attorney with Webber Wentzel, calls the conference “an important and very vital step in trying to find a voice for intersex people”.

“In the acronym LGBTI [lesbian, gay, bisexual, transgender and intersex], you could say the ‘I’ stands for ‘invisible’ or ‘ignored’. This is simply because our law has not built in proper protections for intersex people and for their concerns on a medical front and [in terms of] general discrimination,” says Phala.

“There needs to stop being this ‘invisibilising’ of intersex persons. There needs to be a realisation that we have the instruments in our country — we have the Constitution and all the rights within it apply equally to intersex persons and we need to start making those rights real. We need to start using the instruments at our disposal to protect lives and protect intersex bodies.”

Activists are, for now, making use of their voices to start protecting the bodies of intersex people.

Says Pereira: “The silence is broken when people come together. It helps intersex people feel stronger and less isolated.”

The Hendricks sisters know this all too well. “My sister’s my sidekick now,” Hendricks laughs. “Our relationship has really, really improved. Even our relationship with our mother and other siblings has improved. They never really knew what we were going through because we weren’t talking about it. But now we are speaking.”