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An insiders’ guide to intersex

An insiders’ guide to intersex

When Phoebe Hart hit puberty, she found out she would never get a period or have children. The reason why was a family secret, until this Sunday when Hart's documentary Orchids: My Intersex Adventure will be broadcasted on Australian TV channel ABC1. She speaks to Gay Star News about making the film and her own very personal story.

Looking at your CV, you've worked in TV for a good few years, including being a contestant in Race Around the World and making documentaries on Tasmania, farming and women in Guatemala, why did you wait until now to make a documentary about your own intersex story?

It took a long time to realise I could make a documentary about my own life. That wasn't the reason I got into film-making. I just loved telling stories. I was well into my career when I thought, I could make a film about my life and it might be helpful to other people. But it was a big scary thought for me. As time progressed and I started feeling more and more comfortable in my own skin and I thought it could be not only helpful for other people it could actually help me and my family.

But it was the last thing my parents and other family members wanted to do, to share our story publicly. The film centres around getting my parents to talk to me on camera and just to be more open about what happened, because there was a lot of secrecy. I think there was a lot of guilt in my family, especially from my parents. I started making this film in 2004 and I asked my parents then if they would be interviewed and it took them until 2009 to agree.

Did you find that the process of making the film helped your family?

It did. The public reception of the film has helped them the most. The biggest fear was that other people would judge them as bad parents. We had the world premiere in my home city at the Brisbane International Film Festival where it was voted the most popular film. When my parents saw how warmly people reacted to the film it really changed their attitude a lot. At that screening there were a lot of young people with intersex in the audience and they all flocked to my mum afterwards saying how much they loved her. So she thought 'maybe I didn't do such a bad job after all'.

Did you feel different to other girls when you were a child?

I didn't have any idea until puberty began and I was really flat-chested and hadn't had my period. All my girlfriends had bras and started menstruating. They were badgering me about why I hadn't started, so I was pressured into asking my mum. And she said, 'actually you'll never have your period, you actually don't have a uterus'. And I went away with that information on the proviso that I tell no one, it was a big secret.

From there I stumbled through my teenage years wondering who I was and why I was so different. Was I an alien placed on earth as some kind of weird experiment, to live among humans?

Then when I was 17 my mum told me that I had a condition, that I had male chromosomes and male gonads and my realisation at the time was 'oh, I was meant to be a boy'. But instead of that horrifying me, it was a huge relief. I was not some weird thing with no explanation to it. Also I began to realise I wasn't alone. There were other people out there who must have the same thing.

Do you advocate that parents of intersex children are completely honest and open with them?

I do. I'm a parent now by adoption and I've found reading adoption literature really useful for applying to intersex kids. They've done a lot of research on how stigma and secrecy affects people and finding out you are adopted when you're 30 years old is really a lot harder than when you're five. You don't get the full genetic run down aged five but you let them know, and then from there you're just building on the information, so by the time puberty comes along they're fully sorted. That's what they suggest in all the adoption literature, so when I read that I thought that would've been really great for me too.

When you found out you were intersex did you start identifying more as male?

No, I've always felt feminine and I continued to identify as female. In the movie you see people who had surgery as an infant and were pushed towards male or female, and when they grew up and found out the truth they realised the surgeons had got that wrong.

But it did make me wonder a lot and made me think my brain was a balance between the two. I know I can do things that a lot of my girlfriends don't do very well. Like reading maps for example. I don't know if that's just me over-analysing it. But I did have testosterone all throughout my gestational period as an embryo, so it should have had some effect on my body. I should be a little bit hard-wired to male thinking.

And it effected my sexuality. I went on a journey to work out whether I liked boys or girls or both. Because once I worked out who I was then I had the freedom to work out who I like, which I didn't allow myself before because I just didn't know what I was.

And then you had surgery when you were 17, what was that like?

It was an orchiectomy, that means they remove the male testes that were undescended. Since then I've been on hormone replacement therapy daily. It was a big medical interference. All the student nurses and doctors would come in to look at me. There was all this medical photography and then I was booted out at the end without so much as 'oh, here's a genetics counsellor'. It was an experience that cemented the fact this is something really weird.

Were you asked if you wanted to have the surgery?

I was asked. It was pitched to me as, they're going to take all the boy bits out and make you more feminine, improve the girl bits. So at the time I was like 'yeah, I'll definitely go for that'. But I was only given a modicum of information. I didn't realise that I would have to take hormones for the rest of my life and that would leave me vulnerable to diseases like osteoporosis and breast cancer.

If the testes had been left in, there's a small risk they could have gone cancerous. But I've met plenty of women with AIS [Androgen Insensitivity Syndrome] now who are in they're late 60s who are in perfect health and haven't had any surgery. And for girls in the younger generation the doctors are saying they don't take them out now because we can monitor them effectively and the natural source of hormones is very important. Later, I felt so angry at the doctors.

Do you wish you hadn't had that surgery?

I do wish I hadn't had that surgery. But at the same time I'm a big believer that you can't change the past, you might as well get on with it. I am what I am. Even now at the age of 38 I'm still tweaking that hormonal replacement therapy.

Did you feel different after the surgery?

I did feel different. I went through a period of getting wasted all the time and wanting to escape reality. That went on for years. I had issues about my body, bulimia and eating disorders, not much value for myself.

How did you find your self-esteem again after that?

I think it was just waking-up one morning and realising that I was slowly killing myself and what was the point of that. Even now I'll have moments when I remember what happened and I have this pang of fear or anxiety.

Were there any moments with your family and your husband that you decided were too intimate to be shown in the movie?

No, it was almost the opposite. Sometimes I found I'd chickened out and I had to go back and do something else to push myself further. I felt that if I'm going to do this I'm going to make it as raw as possible.

What's your favourite moment in the film?

There's a bit that my editor and I used to joke about a lot. We're going shopping and the person behind the counter asks why we're making this film and I decide that I'm going to tell her. And there's this moment were I'm about to reveal it and there's a pause for a few seconds and I'm looking down at the counter at some pencils. And my editor thought I was going to say 'the films about pencils!' But no, I say the film's about intersex, and about me and the woman behind the counter was really lovely about it.

Tell me about the inspiring intersex people that you meet on your travels around Australia.

I met one of my favourite school teachers who is now living on the other side of the country. I discovered that he had an intersex condition as well. He was my photography teacher and it was the first time I'd seen him since I was a teenager. It was a really special moment to meet someone who was there at that time when it was all a big confusing secret. And I didn't realise then that there was someone I could have talked to about being intersex who was within arms reach.

What was the most challenging part of making the film?

Definitely working with my mum. Getting my mum on board, getting her to trust me enough to interview her. Also I think that was one of the most touching parts of the film when she finally agrees and she talks. She has so much to say and she's also very funny. So it was one of those challenges that was worth it in the end.

How do you feel about the terminology around your condition?

Intersex is the most widely accepted. I’m trying to reclaim hermaphrodite but some people might consider it offensive. Disorder of Sexual Development (DSD) is a term used by the medical community, which I don’t really like because it’s pathologising.

How do you think society needs to change in Australia to better serve intersex people?

In Australia much has been done already to ensure the rights of people with intersex conditions in terms of anti-discrimination, marriage, passports and correction of birth certificates.

However, there are legal developments to do with surgery to be performed on intersex children. My personal opinion is that it is the right of everyone to have full disclosure and information about their own bodies and what happens to them. Children have the capacity to understand critical decisions around surgery which may determine the gender in which they are raised.

Orchids: My Intersex Adventure screens ABC1 10pm Sunday 29 January. Plans in the pipeline for TV screenings in other countries. See a trailer here:

Orchids – the trailer from Phoebe Hart on Vimeo.