Key Points
- The ACT has passed legislation to prevent unnecessary medical procedures from being performed on intersex children.
- The term intersex describes people who have naturally-occurring differences in sex characteristics or development.
- Advocates say unnecessary procedures are often performed without consent and can cause physical and emotional harm.
Miranda Hall was born intersex. Under doctors' advice, her parents agreed for her to have surgery as a baby, which she says has had significant physical and emotional repercussions.
"The consequences of that surgery meant having to take hormone replacement therapy for the rest of my life, let alone the psychological scars that made from the removal of bodily autonomy," she said.
"It was also something I was taught never to tell my friends of my siblings, so it led to a lot of internalised shame and a lot of body image issues; a lot of belief that my body was wrong or abnormal, or unnatural and needed fixing."
Now, she hopes new legislation passed in the ACT could prevent intersex children from being put in similar situations.
On Thursday, in an Australian first, the ACT passed laws to prevent medical procedures from being performed on intersex people without their consent.
The bill will prohibit unnecessary medical treatments on people with natural variations of sex characteristics until the person can make the decision themselves.
"This legislation is everything I wish I had protecting me when I was growing up," Ms Hall said.
"I am so, so happy that it will be here to protect all the future intersex children."
What does intersex mean?
Intersex is an umbrella term that refers to people born with sex characteristics that do not align with social or medical norms for male or female bodies.
It is also known as having Differences in Sex Development (DSD) or Variations in Sex Characteristics (VSC), and can include hormonal, chromosomal or anatomical variations.
Some intersex people have visible differences, such as having both male and female reproductive organs, but it is not always obvious.
In some cases, when a child is born intersex, parents agree for the child to undergo medical treatments.
According to Equality Australia, early and unnecessary medical procedures can impact fertility, sexual function, urinary tract health and gender assignment, and can create a need for ongoing medical treatment.
Morgan Carpenter is executive director of Intersex Human Rights Australia and research affiliate in the University of Sydney School of Public Health. He said while these cases are not frequent, the harms can cause significant damages.
"We care about any treatment on children or adults whose bodies are stigmatised because our sex characteristics are seen as different," he said.
"The numbers of interventions on children are not frequent ... but the implications for people's health and wellbeing are profound."
Ms Hall agrees.
"The psychological harm that these surgeries create far outweighs the potential benefits of trying to 'fix' our bodies," she said.
"They don't need fixing."
What is the new intersex legislation in the ACT?
The Variation in Sex Characteristics (Restricted Medical Treatment) Bill 2023 enforces restrictions on medical treatments altering the sex characteristics of intersex people except with consent, in emergencies, or when authorised by an independent assessment board.
An independent assessment board will also be created, with committees comprised of people with lived experience and experts in medicine, human rights, ethics and psychosocial support.
The board will oversee medical treatment plans for intersex children and others who do not have capacity to consent to necessary treatment.
Mr Carpenter has been working on the legislation since the IHRA was established (as Organisation Intersex International Australia) in 2010.
"It's a really emotional, powerful moment; it's a culmination of so much work," he said.
"This is the first time that these medical interventions - that can have a profound impact on people's lives - have been regulated."
'The feeling is immense'
Cody Smith was also born with an intersex variation but only found out at age 17.
Cody had numerous surgical interventions before the age of two and was put on hormone replacement therapy as a teenager.
"Decisions were made for me as a child that caused me harm all my life, and what this legislation says, is that what happened to me as a child is not ok," they said.
"It means the next generation of children can have a happier story than mine."
Cody Smith said they were ecstatic the ACT has passed legislation to prevent surgeries from being performed on intersex children without their consent. Source: Supplied / Cody Smith
"The feeling is immense, it's joyous, it feels so much bigger than us," they said.
"The opportunity to see the legislation pass surrounded by my colleagues has had a profound impact on me today."
They said they hope the legislation will also mark a step forward in understanding what it means to be intersex.
"Intersex people have always existed as part of the human condition; we're not complicated, we're not exotic, we're not controversial," they said.
"There's no reason why, when boys and girls are learning about their bodies at school, we can't learn about the existence of intersex people as well."
