ACT drafts Australian-first legislation to stop deferrable surgical interventions on intersex children

Cody Smith was born intersex and has spent years advocating for others like them.  (ABC News: Greg Nelson)

Cody Smith always had a keen sense of fairness.

As a child they boycotted Mcdonald's over the "McLibel case" in which the fast food chain sued environmental campaigners.

"I remember thinking, 'that's so unfair' and that made me so angry that from the ages of nine to 18 I refused to eat McDonald's," Mx Smith said.

"Even on the long road trips my parents would say 'if you don't eat here you're not eating for another few hours' and I was just like, 'yeah but McDonald's are meanies'."

Now aged 34, Cody's latest fight has been for intersex people.

'I never felt quite right in my own skin'

Some of Cody's intersex traits were "surgically corrected" when they were an infant.  (Supplied)

Cody was born intersex — an umbrella term for those born with genetic, hormonal or physical sex characteristics that do not fit the social norms for male or female bodies.

It is estimated between one and two per cent of babies fit the definition in Australia.

"I was born and I was almost immediately taken away [by] doctors," Mx Smith said. 

"Once they had a diagnosis for my parents, they pushed for surgery and my parents agreed to have some of those intersex traits surgically corrected with a number of surgeries during the first two years of my life.

"When doctors have picked a gender for you, you're raised in that gender.

"It was a pretty weird way to grow up, I used to write stories as a kid about feeling like a space alien, to me that speaks to always knowing that I was born a little bit different."

Cody says they didn't feel like they fit in as a teenager attending an all-girls school in Canberra.  (Supplied)

The feeling grew stronger when Cody started attending an all-girls high school in Canberra.

"I never quite felt right in my own skin."

When Cody was about to turn 18 their Mum sat them down and told them that they were born intersex.

"There was a period of time when I found out I was intersex where it was a very lonely thing, it wasn't something that my friends knew how to talk about, it wasn't a thing that really made sense to anyone," they said.

"The best thing that ever happened to me was finding my intersex family, finding all these people who had these similar experiences, who are wonderful and eccentric and sometimes difficult but just so loving and all just so human."

After years of wrestling with their own journey, Cody eventually became an intersex advocate, working for Canberra organisation A Gender Agenda and now the national body Intersex Human Rights Australia.

Push for a ban on deferrable treatment

Some hormonal treatments and surgeries recommended for young intersex people are critical to prevent disease.

But others, known as sex-normalisation procedures, can be done just to make babies develop in a more typically male or female way and can be deferred.

Intersex people have long called for these particular treatments to be deferred until the person is old enough to be able to make a decision for themselves.

Cody Smith (right) with their brother Alex. Cody didn't find out they were intersex until they were 17 years old.  (Supplied)

"Unfortunately a lot of the surgery on sex characteristics is cosmetic in nature.

"For a woman it's labiaplasty, it's a clitorectomy, but these are things that can reduce function, reduce sensation, that cause scarring and they're ultimately done to address the distress of the parents who are not comfortable with a child born different."

ACT government releases nation-first intersex bill

The ACT government has released a draft bill that would make it the first jurisdiction in Australia to ban deferrable medical treatments on intersex people's sex characteristics, until that person is old enough to make that decision themselves.

The draft bill allows treatment for medical emergencies or procedures that are either easily reversible or do not affect sex characteristics.

ACT Chief Minister Andrew Barr said the bill outlined a plan that when an intersex child was born, their parents would be given information, advice, and psychological and peer support.

"Because what we're endeavouring to resolve here is decisions that are taken and are potentially irreversible, that later in life turn out to have really significant implications for the individual."

Andrew Barr says under the proposed changes parents of intersex children will be given more information, advice and support.

Under the bill, if parents want to pursue treatment for their child there would be two avenues they could follow.

Doctors would be able to follow general treatment plans and put together by a panel of experts for routine treatments that were universally beneficial for some of the more common intersex sex characteristics.

A possible example of this type of treatment could be for undescended testes, which is when one or both of the testes do not move down into the scrotum once a child develops and can be treated by a low-risk surgery.

But, for some of the more rare or complicated sex characteristics, parents would be assisted by health professionals to come up with an individual medical treatment plan, which would be put to a panel of five experts for approval.

Mr Barr said the draft bill required the panel to have one expert each from the fields of medicine, ethics, human rights, variation in sex characteristics and psychosocial support, while at least one panel member must be a person with a variation in sex characteristics.

"It is essential that you get the best medical advice, that there is ethical advice provided, and lived experience provided as well, as part of a process," he said.

The draft bill deems that decisions made on restricted medical treatment cannot be influenced by an aim to adhere to "perceived norms of appearance or function" or "reducing the risk of discrimination or stigmatisation".

And a health professional could be faced with up to two years in prison for carrying out a restricted medical treatment without panel approval, while removing an intersex person from the ACT for the purpose of carrying out a restricted medical treatment would also be an offence.

The draft bill applies to what is deemed a "protected person", an intersex person who does not have decision-making capacity, if they do have decision making capacity then they are able to choose whatever treatment they want to pursue.

Bill to help intersex people 'start to heal'

Cody's father, Alan Smith, is glad that more information will be provided to parents of intersex children under the bill. (ABC News: Luke Stephenson)

The Smith family believe the release of the draft bill is a breakthrough for intersex people.

Cody's father, Alan Smith, is particularly pleased that more information will be provided to parents.

"If the parents aren't informed and they don't know what their choices are and they have no support, that makes that that much harder.

"I think making changes for cosmetic purposes, making hormonal changes to induce behaviours of growth, because it's seen as being normalising, doesn't help and I think it makes things worse."

For Cody the draft bill's measures to prohibit preventable treatments is vital.

"All it is is just ensuring that where and when an intersex person can make a decision, that they are the ones making that decision, that it's not taken away from them," they said.

"What I hope for with the legislation is stopping a dripping tap. I like the idea that if fewer intersex people are being harmed then we can really start to heal as a community and start to thrive without just having these tragic stories of trauma.

"Putting that behind us just feels like the best thing we can do now."