Steph Lum found out she was different at age 19.
It wasn't for another few years that she learnt the term intersex applied to her, and that was an "oh my god" moment.
Intersex is an umbrella term used for people who have nonconforming genitalia or reproductive organs. It is estimated about 1.7 per cent of the world's population is born intersex, although data on the exact number is hard to come by.
Unlike many people with an intersex variation, Steph feels lucky to be different.
"The doctors didn't tell me I had a problem, they just described to me how my body was and that I could change things if I wanted to - but that I didn't need to and that was a decision I could make in my own time," she said.
So she just carried on "living my boring, everyday, intersex-person life". That was until she discovered her story was the exception and not the rule.
Now 26, Steph is a champion for change in the intersex community as co-chair of Intersex Human Rights Australia and her work on the ACT LGBTIQ ministerial advisory council.
"There's not enough people talking about it, which is how I got into that side of things," Steph said.
She said the wider community needed to know about the problems facing intersex people, like non-consensual medical intervention on babies and children with intersex variations.
But for now, Steph's focus is on collecting and compiling stories from young people in the intersex community, for a publication called YOUth and I that she hopes to distribute to cafes and schools in Canberra, and more widely.
Steph has received an ACT government Capital of Equality grant to publish the collection of stories, reflections, poems or drawings. She hopes the publication will help educate others who might have been born with an intersex variation, and the wider community.
She said doctors don't necessarily use the word intersex when discussing particular medical conditions in this space, so it can be hard for people with an intersex variation to connect with each other.
"But if they pick up this publication and read the experiences, they might say, well maybe I don't use that word to describe myself but actually I can relate to a lot of these experiences."
Steph recently gave a TED-style talk at the Women Deliver conference in Canada, funded by the conference organisers. She talked about shared experiences of being intersex, although not necessarily things she had experienced herself.
"Is it because you feel so alone, that there's no one else like you? That's what they told you, wasn't it. They told you there's hardly anyone else," she tells the audience.
Speaking with the Sunday Canberra Times, she said growing up is stressful enough without having a medical diagnosis of being intersex thrown into the mix.
"I thought this would be a really cool way to engage people with something that's more positive. There's not that many positive and fun things for our community, so this is like a real way for people to express themselves," she said.
- If you're a young intersex person and would like to contribute to the publication, contact Steph at firstname.lastname@example.org