The no longer silent ‘i’ in LGBTIQ

Of the few photographs CJ has from her childhood, there is one that stands out from the rest.

Aug 01, 2018, updated Aug 01, 2018
Signatories of the Darlington Statement - a joint consensus statement by Australian and New Zealand intersex organisations and independent advocates. Photo: Phoebe Hart

Signatories of the Darlington Statement - a joint consensus statement by Australian and New Zealand intersex organisations and independent advocates. Photo: Phoebe Hart

The year is 1959. CJ – then seven years old – is living a quintessential Adelaide childhood – dressed up at the Magic Cave to pose for a photo on Father Christmas’s knee.

“There I am in my pretty little spotted dress and my going-out shoes and a bow in my hair looking all shy and looking like any other seven-year-old girl,” she says. “There’s no reason to think any differently and the fact of the matter is that, 60 years later, I shouldn’t think any differently about myself either.

“But something happened to change that.”

That “thing”, unknown to CJ or her parents at the time, was complete androgen insensitivity syndrome, one of around 40 intersex conditions that affect as many as two in every 100 people.

It’s said that intersex people are more common than people with red hair, yet the word “intersex” is often hushed from people’s consciousness, blurred with transgender and misconstrued as an identity that people “choose” to acquire.

Intersex people, according to Intersex Human Rights Australia, are born with physical sex characteristics that don’t fit the medical norms for female or male bodies.

CJ was born with XY chromosomes – a genetic characteristic of the male sex – but her body was unable to respond to androgen male sex hormones. The result, according to CJ, was “the next best thing”: a girl who can’t have children, and whose sex characteristics are “a little bit different”.

“People say all sorts of things to me when I pluck up the courage to tell them that I’m intersex and why.

“I would say to them, ‘I was born without a uterus’ and I wish I had a dollar for every time somebody came back and said, ‘So what, you can’t have kids then?’ It’s kind of like, you’re kidding aren’t you?”

CJ’s condition wasn’t discovered until she was 11 years old, when her parents and doctors started to notice two lumps on her groin. They thought they were hernias (at least that was all they told CJ at the time) but the doctors soon realised their true nature.

“I really thought when I went into hospital just before my 16th birthday that they were going to fix up the hernias, which they did, but I had no idea about the rest of it.

“I was kind of told it was exploratory but of course they knew what they were dealing with – the doctors and my mum and dad.”

They were removing undescended testes.

Intersex people have for a long time fought against what they describe as a pattern of human rights abuses on infants, children and adolescents born with intersex traits.

In their view, medical practitioners can be swayed by gender stereotypes, a compulsion to minimise family concern and mitigate the risks of gender-identity confusion among intersex people by conducting “normalising” medical interventions.

Often the practice occurs without patients’ consent or knowledge of the surgery’s true nature. The extent of the practice is also unclear. While anecdotal evidence suggests medical interventions on intersex people are not as common today as they were during CJ’s adolescence, people in the intersex community assume the practice still continues in Australia and around the world.

There are currently no national guidelines or legislation on the management of people born with variations in sex characteristics in Australia.

“Clinicians and the medical fraternity, they try to make that choice, they try to normalise people into one or the other with disregard for the fact that you can function quite easily being somewhere between the two, being intersex.

“What the specialists were saying (when I was 16) to my parents was, ‘Don’t tell her anything.’ It’s that kind of, what she doesn’t know can’t hurt her. Keep her in the dark.”

CJ remained in the dark for three years, until she was 19, when she discovered a letter left on her plastic surgeon’s table that revealed the true extent of her condition.

On it, she read the words “testicular feminisation” – the former medical term used by doctors to describe complete androgen insensitivity syndrome.

“That’s wrong to not give people full disclosure and I can’t think up the top of my head of another circumstance where full disclosure isn’t given.

“You don’t keep information back from people, you don’t push them into a corner to make a decision, which is what happens with parents. There was this sense of urgency – we need to do something now, not next week, now.

“But once you chop your bits off you can’t put them back.

CJ describes herself as a solitary lion lost in a wilderness of isolation.

Her family never discussed the word intersex– it remained a secret, clouded in stigma and a sense of shame.

“It is very difficult to see yourself as a full woman, even though you are,” CJ admits.

“What I say is, imagine you’re a lion and you wander the planet and you’re existing with other people who look a bit like you – there’s cheetahs and panthers and pussy cats and bobcats and so on – but they don’t look like you. There are lots of them, but there’s only one of you.

“Then one day you stumble upon another lion and you just can’t believe it – you thought you were the only one.”

CJ met her first lion when she was in her mid-forties. She found an intersex support group in Australia, which at the time had only just started up.

“It wasn’t until I got divorced that I got curious. I wanted to know more and went looking and it was hard to find that information. It’s a lot easier today.

“We’re not out there all the time like some other people in the LGBTIQ spectrum are – those groups have been fighting for identity for a lot longer than we have and they’re a bit more visible.

“We’re in the early stages of that.”

Now 66 years old, CJ proudly describes herself as the South Australian and Northern Territory representative of the Androgen Insensitivity Syndrome Support Group of Australia and board member of the South Australian Rainbow Advocacy Alliance.

She’s a well-known figure in the South Australian intersex community (“I feel a bit like the mother figure, the matriarch of the group”), though there remains very few openly intersex people in the state.

Her road to self-acceptance hasn’t been easy though. CJ describes a time, around 2010, when she took her then boyfriend to a screening of Orchids: My Intersex Adventure, a documentary about a woman’s struggle to understand her own intersex condition.

“I was a bit worried about taking him because I tried to tell him a little bit about myself, because I always think people can tell, but they can’t.

“In the spirit of openness you share a little bit, hoping it won’t have people running away.

“I have to say, he was never the same after I took him to that launch and our relationship didn’t last very long after that.”

Then came what CJ describes as a defining moment in her relationship with her father.

It was just before the same-sex marriage debate in November last year, a time when LGBTIQ issues were in the spotlight and people were rallying support for not only marriage equality, but LGBTIQ rights too.

Her father, as the main breadwinner in the family, remained an outsider during CJ’s early days of medical interventions. Now in his 90s, CJ’s father began to understand for the first time in 50 years his daughter’s condition.

“As part of the conversation he started crying. He said, ‘I did it to you, I did it to your mother.’ I went, ‘What?’ He said, ‘I don’t know, maybe something affected me when I was in the war and it made you like that’.

“I said, ‘Ok dad, I’m going to give you a genetics lesson and an anatomy lesson.’

“Imagine a slinky toy and a fly lands on the slinky toy and leaves a speck of dirt. If you stretch out the slinky toy that looks a bit like a DNA strand and that little speck there, that’s what predicated that I would be born as an intersex child.

“It’s only one small part of me and you didn’t do it to me – the universe dictated what would happen to me.”

Speaking openly about her life is a new experience for CJ. She admits she has gone out on a limb speaking to the media, but has found comfort in knowing she can help other intersex people find solace in speaking to others.

In March last year, CJ travelled to Sydney to help write the Darlington Statement – a joint consensus statement by Australian and New Zealand intersex organisations and independent advocates that stipulates the priorities of the intersex human rights movement.

In it, the group calls for an immediate prohibition of deferrable medical interventions, including surgical and hormonal interventions, which alter the sex characteristics of infants and children without personal consent.

It calls for mandatory independent access to funded counselling and peer support for individuals and families and legislative protection from discrimination on the grounds of sex characteristics.

Earlier this month, the Australian Human Rights Commission announced a project to consult on protecting the human rights of people born with variations in sex characteristics in the context of medical interventions.

Work is also underway at an international level via the United Nations Committee on the Elimination of Discrimination Against Women.

In June this year, Intersex Human Rights Australia made a submission to the committee, in which it said that despite “rhetoric by Australian governments that denies or asserts changes to clinical practices” harmful practices continue to occur.

“A long time ago for a number of reasons I’d look up to the sky and I’m not sure I believe in God but I’d just ask, ‘Why me God? Why me? Why me?” CJ says. “But now I’ve been able to find some purpose in my life, to be able to leave something behind and have some legacy.

“My name will forever be on the Darlington Statement and I’m not doing it for any kind of fame or glory. God forbid it’s just process and finding time in amongst everything else to commit a bit of your life to being altruistic.

“What I think now is, if the road can be a bit easier for another intersex person born today or tomorrow or next year, what a great thing that would be.”

If you or somebody you know is intersex, contact Androgen Insensitivity Syndrome Support Group Australia (AISSGA) or Intersex Human Rights Australia (IHRA) for information, support and advice from other intersex people with lived experience. 

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