“I never really felt like I had a sick body that needed to be treated. I know I had a body that didn’t really conform to expectation of what a female body should look like.”
Bonnie Hart has an intersex variation known as complete androgen insensitivity, meaning that while she has XY chromosomes, her male hormones don’t lead to male characteristics.
“I present female, identify as being female, I look female,” she said.
“For all other reasons I’m female.”
Pediatric endocrinologist Shubha Srinivasan works with families with intersex infants.
Dr Srinivasan said "intersex" - or "disorders of sex development" or "differences of sex development" - was an umbrella term for a range of conditions where there had been a divergence in the development of the sex chromosomes, genital anatomy, or the gonads.
"These conditions affect up to two per cent of the population," she said.
Biological sex is determined by five factors at birth: the number and type of sex chromosomes, the presence of ovaries or testicles, the sex hormones, the internal reproductive anatomy, and the external genitalia. People whose five characteristics are not either all male or all female at birth are intersex.
While Bonnie’s external sex organs are female, she was born with testes in the place of a uterus or ovaries. At the age of 11, her parents were convinced to have her undescended testes surgically removed.
“I remember lying down with a gown and... someone talking about my body, and about me, like I wasn’t even there,” she said.
“And they’d say, ‘we’re going to have a little look now’, they’d inset either their fingers or something else in to me.
"I feel like that’s kind of a rape experience, but different because it was so clinical.”
Dr Srinivasan agreed that past medical treatment of intersex people was flawed.
“Previous practice was to remove the testes before puberty, because they were not thought to be needed, and also have a cancer risk,” she said.
“We now know that if we keep the testes in the abdomen, the testosterone that they produce gets converted to estrogen. That helps to feminise that person’s appearance.
"If testes are removed, then they need lifelong replacement of hormones.”
"One of the key human rights issues is not really the existence of binary genders, but what is done medically to make us conform to those norms."
Bonnie currently receives hormone therapy.
“I feel like that surgery created more health problems for me than it fixed,” she said.
“I know other XY women who haven’t had that surgery. They have their own natural hormones in their bodies. I lament not having that, not having that sense of wholeness.
"Instead I have to play chemical cocktail lab in my own body.”
Promoting options other than surgical treatment is part of the work of Morgan Carpenter, an intersex activist and researcher, and President of Organisation Intersex International Australia.
“One of the key human rights issues is not really the existence of binary genders, but what is done medically to make us conform to those norms," he said.
Mr Carpenter and his organisation attempt to spread awareness and information about what it means to be intersex and to help dispel the stigma associated with it.
“There are so many people out there that have this legacy of secrecy, of shame, of dealing with stigma," he said.
"There’s so much silence… Stigma is an issue. We think we have to address that stigma rather than changing people’s bodies to make them suffer less.
"One of the key things I want to try to tell people about is just how diverse we are. We’re not talking about a third sex with a third kind of body. We’re talking about a huge range of diversity.”
“I think for parents it’s probably one of the most stressful experiences they go through."
Fighting silence and stigma is something Bonnie has done her whole life.
“I grew up thinking that I couldn’t actually tell anyone about it because they wouldn’t understand, and that it was my fault, it was something that was secret within our family,” she said.
“And only our family. I didn’t really understand how prevalent intersex actually is.”
After the surgery healed, Bonnie returned to school.
“I had to make up all these lies about the great holiday that I’d had," she said.
"That was kind of the beginning of starting to tell a whole bunch of lies about myself in order to stop people guessing the truth about my body or who I was.”
Dr Srinivasan empathises with the confusion felt by parents.
“I think for parents it’s probably one of the most stressful experiences they go through," she said.
"Questions of how that child will fit in to school, will they go through puberty, will they be able to have satisfying relationships, or will they be able to have children”.
The difficulty of parenting an intersex child is an experience that resonates with Anne*.
Anne discovered her daughter was intersex when she was nine-years-old, after an ultrasound revealed that suspected hernias were in fact testes.
“It was a feeling of loss that the daughter who we thought we had had suddenly discovered something that might not mean she was not who we thought she was,” she said.
“As a parent that was hard to deal with. I was very emotional for a long time, for months.
“We started to tell our daughter about her body when she was around ten, really jut the basics - that inside her body she didn’t have ovaries, she had testes, so she wouldn’t be able to have a baby. She actually took that surprisingly well. She came out with the comment ‘that means I’m unique!’. And thank goodness."
Dr Srinivasan agrees that speaking openly with intersex children is important.
“Children are very accepting of variations and differences, and it’s very important that we keep them informed throughout their childhood," she said.
"There’s appropriate disclosure at developmentally appropriate times in a children’s life.”
Anne’s daughter was diagnosed with five alpha-reductase deficiency, meaning that her body may have masculinised at the onset of puberty.
They began to discuss surgery when her daughter was thirteen.
“She told us that she liked her body the way that it was," she said.
"She didn’t want her body to change at all, so she wanted to have the testes removed. That was a huge decision because as a mum, I didn’t want to take anything away from her body that was hers... However, she wanted the testes removed, and she identified as being female, so we supported her in that decision.
“I feel fortunate that our daughter was at an age that we were able to talk with her about it. I feel like our family is one of the lucky ones, But who knows what the future holds with her? When she’s in her twenties, she might feel content, she might feel like she made the right decision… She might not. I don’t know but we’ll deal with those things as they arise.”
"Most people with intersex conditions, they don’t talk about it. So how are we to know who is happy with surgery and who gets to a point where they think that shouldn’t have been done.”
"I’d really love it if intersex people could have that real sense of pride that could go along with knowing who they are and what they are, and being totally okay with that."
This is the significance of the activism of Bonnie and Morgan, who fight against the historical erasure of intersex people and their lives.
"I’d like to think that medical treatment really has improved for intersex infants and adults,” Bonnie said.
"I’d really love it if intersex people could have that real sense of pride that could go along with knowing who they are and what they are, and being totally okay with that. Seeing it as being a blessing."
“Let them enjoy their bodies," Anne said.
”Celebrate that difference.”
For more information and support services about being intersex, visit here.
*not her real name. She has chosen to remain anonymous to protect her daughter’s privacy and autonomy.