“I CONSIDER myself to be agendered, so I’m neither male or female,” 27-year-old Cody says.

Cody was born with a naturally occurring intersex variation. This means she has biological characteristics that are both female and male.

For the purposes of this story, Cody gives me permission to use the pronouns “she” and “her.”

This is not because Cody is a female. It’s from generosity — to make life easier for me when I’m writing the story, and for you when you’re reading it. After all, there are no universally accepted pronouns in the English language for a person who is not a man or a woman.

“I don’t mind how people gender me … because I don’t feel like I have a gender,” she says, adding: “I’m okay with that.”

Today, Cody speaks with ease and confidence about her intersex status. It wasn’t always this way. Growing up was hard.

Cody went to an all-girls school and from about the age of 12 she was picked on “for being quite a masculine girl.”

“I never felt like I fitted in,” she says.

Her childhood was riddled with regular, uncomfortable visits to doctors in Sydney and Canberra. She recalls seemingly endless blood tests, bone density scans and physical check-ups.

“You go to the doctor, and the doctor says, ‘Okay, we’re just going to have a quick look now.’ What they were talking about was looking up your shirt for breast development or looking down your pants for development there as well, just to make sure everything was normal and okay.

“It was always very invasive,” she says, “it felt very violating.”

Suddenly, Cody looks upset and says: “Yeah, I can’t talk about this.”

With what can only be described as courage, she takes a moment to gather herself and then presses on.

“It just comes back to this idea of trust in the medical community, “ she says.

“I never had the language to ask why it was happening. I never really understood the reasons why the doctors would ask me questions.”

As a child, Cody believes she was treated like a “dumb kid” by medical staff.

“There was no way to give informed consent to anything they ever asked of me, because they never presented the information,” Cody says.

Like many other Australian adults who are intersex, Cody was operated on as a baby. While she deeply loves her parents and believes they made the best possible decision with the information they had at the time, Cody still wonders if she was “turned into a woman, whether or not that was something I’ve wanted to be.”

Dr Shubha Srinivasan, a paediatric endocrinologist at The Children’s Hospital at Westmead in Sydney, has been working in the field for a decade.

Dr Srinivasan says this kind of so-called ‘normalisation’ surgery for children born with “differences in their sex development” is rare in Australia today.

“No one would do any cosmetic genital surgery purely because of the parents requesting it.

“If we think that the parents are requesting something that we don’t think is necessarily a medical need, and may not be in the best interest of the child, then legal advice would be sought and the family law court would be involved,” she says.

According to Dr Srinivasan, surgery on intersex children mainly occurs because of specific medical problems.

“There is a range of conditions where there are differences of sex development, and each of those conditions is unique and has varying medical issues,” she says.

For example, Dr Srinivasan says an intersex child may need surgery if precancerous cells were found in the gonads or if there were urine flow issues that may cause infection.

In contrast to Cody’s experience, Dr Srinivasan says nowadays doctors working with young intersex patients include them in the conversation.

“Sometimes as paediatricians, one of the difficulties for us is parents find it difficult to tell their child about their condition or diagnosis.

“But we are always trying to give them the tools and resources to keep informing the child from a young age in age-appropriate language,” she says.

Dr Srinivasan says sometimes when a baby is born with genitals that look different, parents need support answering the common question “What did you have? A boy or a girl?”

She advises them to say something along the lines of: “We have a beautiful healthy baby who needs a few tests. We’ll be in touch soon.”

Dr Srinivasan says doctors work to ethical principles that highlight the human rights of the intersex children that they treat. They also working towards improving psychological support.

While there’s no expert consensus on how many types of intersex variations exist, a recently released United Nations fact sheet explains that up to 1.7 per cent of the population “is born with intersex traits.”

To put this in context, it means about 407,000 people in Australia may have an intersex variation.

Gina Wilson, 64, is an intersex activist and consultant. She describes being intersex as “an extremely unpleasant experience.”

“A lot of people will say I’m courageous or things like that. I disagree. I had no choice to be intersex. That’s how I was born,” she says.

“I had to carry that burden all my life and people have let me know, in no uncertain terms, about my differences. I’ve been excluded, marginalised,” Gina says.

Just like Cody, Gina gives me permission to use female pronouns although she doesn’t use them herself.

“The whole business of male, female, and gender … has been an ongoing tragedy in my life, which I wish could bail out of, but I can’t,” she says.

Gina politely tells me that some of my questions about her medical history are inappropriate. After all, why should she be required “to reveal my medical diagnosis and my medical procedures”?

“I strongly oppose the pathologising of intersex,” she explains.

However, Gina does tell me she was also “subjected to infant surgery.” To her, this is proof that intersex is related to gender.

“I was certainly assigned a gender when I was born, because my sex was unknown. “That is true of all children who are born where their sex is unknown.

“Intersex is completely about gender and gender assignment,” Gina says.

Community attitudes towards intersex people have “come light years” from the stigmatisation she grew up with in regional Victoria, according to Gina.

“The justification that surgery should be performed for psychosocial reasons is falling by the wayside,” she says.

Even so, Gina believes there’s still a long way to go. She’d like to see the focus shift onto “intersex as whole-life experience.”

“Over 90 per cent of people who are intersex are adults. There are no services to help us with having lived an intersex life,” she says.

“We need services to help with ongoing medical issues and also the psychological issues that come out of medical trauma and social marginalisation,” she says.

In Gina’s case she has complex and ongoing metabolic issues related to her intersex variation that make her physically ill. She was also sexually abused as a child.

“My abuse was in fact focused around my physical differences. It was fascinating to some people,” she says.

Gina says that as a child, she had no language to articulate either her abuse or her intersex status.

“George Orwell is right, if you deprive people of language, if you deprive them of words, then they have no way to express the idea,” she says.

Although life hasn’t been easy for Gina she says: “I’ve made the best of it that I can and I found happiness with my partner of 11 years.”

For Cody, it has been a long road that led her to finding a voice. Seven years ago, she was in a human biology class at university. The lecturer was presenting information about intersex variations.

“It was just this really cold, clinical parading of variation after variation with words and images,” Cody says.

“It was very, very confronting,” Cody recalls, “I just locked down. It was just textbook depression. It was hard to get out of bed. It was hard to eat. It was hard to take care of myself. I started having suicidal ideation.”

Eventually Cody sought help and found an online community that seemed to fit.

“They call themselves ‘gender queer’. They practice sort of confrontational androgyny. They take on unisex names. They’re just all about blurring the line between male and female,” she explains.

Just recently, Cody was asked to tell her story at an educational workshop held at a Federal Government department. The experience transformed her into an activist.

“Being able to talk about it so freely was so empowering. Just knowing how that was going to change how those people treat others,” Cody says.

If this story brings up any issues for you and you need support, talk to your GP or call Lifeline on 131114. Lifeline’s website is here.

Ginger Gorman is an award winning print and radio journalist, and a 2006 World Press Institute Fellow. Follow her on twitter: @GingerGorman