The Missing Voice, a groundbreaking new report by Equality Australia, found that Intersex children continue to be at risk of harm from procedures that can be deferred until they can consent.
A new report released today, The Missing Voice, has provided insight into current surgical and other medical interventions on intersex children in Australia.
This includes the rationales driving the decisions for medical intervention.
“Our report shows that intersex children born today remain at risk of medical procedures that could be delayed or avoided altogether if stronger oversight and support were in place.”
“We can and must do better,” said Equality Australia Legal Director Heather Corkhill.
“For parents who need clear information, for clinicians who deserve support in making difficult decisions and for future generations of intersex children.”
Intersex people are born with innate variations of sex characteristics that don’t fit medical norms for female or male bodies.
As the intersex community has grown more visible, we have learned how common unnecessary and irreversible surgeries are to individuals.
Especially when they are too young to consent.
It is believed that about 1.7 per cent of the population is born with an intersex trait.
There are at least 40 known intersex variations.
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46.99% of surgeries were for cosmetic reasons
In compiling the report, Equality Australia issued Freedom of Information requests to every major children’s hospital in the country.
Asking them about medical procedures performed on intersex children.
Only 83 cases from NSW and Queensland were suitable for a thematic analysis, covering medical interventions between 2018 and 2023.
The limited number was due to heavy redactions and inconsistent record-keeping.
The report shows that non-medical rationales and disproportionate considerations were observed at least 109 times in treatment discussions.
Single cases could contain more than one issue without appropriate attention to the risk of harm.
46.99% of surgeries were for cosmetic justifications.
16.87% of surgeries were for gender reinforcement.
25.30% of surgeries were for unbalanced assessment of medical risks.
And 62.65% of surgeries were due to parental distress or confusion.
The report highlighted the absence of a strong, independent system for resolving complex cases, and found that hospitals lack consistent, centralised processes and documentation practices.
“The current system is in dire need of reform. Even one case of harm is one too many,” Corkhill said.
Photo: IHRAThe Missing Voice calls for urgent reform
To legislate and properly resource oversight frameworks across the country, safeguarding the autonomy and rights of intersex children.
Such reform has been implemented in the ACT, and Victoria is considering implementing a ban on unnecessary intersex surgeries.
“In Australia, infants and children with intersex variations are still subjected to irreversible and non-essential surgeries,”
“Including clitoral reduction and the removal of healthy gonads,” said Tony Briffa.
Briffa is an international LGBTIQ+ advocate and the world’s first openly intersex public office bearer.
She was born with internal testes that were removed at seven years old and on female hormone replacement at 11.
Even though her body would have converted testosterone from her testes into oestrogen.
“The differences with our bodies are a natural part of human diversity,” Briffa said.
“And surgical and hormonal interventions should only go ahead when the medical necessity outweighs the risk of causing someone lasting harm.”
Image: Supplied‘What happened to me was wrong’
“I’ve spent the last 25 years fighting to make sure it never happens to another person,” Briffa said.
“Every intersex person in Australia should be able to live a full and dignified life in which they decide what happens to their own body.”
Associate Professor Dr Morgan Carpenter, bioethicist and Executive Director of InterAction for Health and Human Rights (IHRA) said that many of the treatments in the report are still happening today.
“Clinicians in this field have asserted that adults who complain received ‘obsolete treatments’ and their techniques have changed.” Dr Carpenter said.
“I analysed recent records of team discussions in children’s hospitals for Equality Australia and InterAction.”
“Many of the children whose treatment is discussed are still being treated in paediatric hospitals.
“The information disclosed is troubling and often distressing.
“Children with intersex variations are still not being treated in line with community expectations and human rights standards.
“Without accountability and deterrents, this will not change.”
In August, the Australian Medical Association passed a motion calling for a deferral of surgical interventions for intersex people until they can give consent.
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Unnecessary surgeries can, and should wait for consent
Corkhill pointed out that an oversight body would not delay urgent or essential medical treatment.
But would “prioritise giving each child the freedom to keep as many future options open as possible.”
Intersex children often undergo medical procedures before reaching the age of consent that can have long-term consequences.
This includes loss of sexual function and sensation , loss of fertility and urinary tract issues, including incontinence.
As well as a need for ongoing medical treatment and repeat surgeries , incorrect gender assignment , loss of autonomy and loss of choice and negative self-image.
The Missing Voice report also includes 11 stories from intersex people.
They provide a rare and invaluable insight into the deeply personal consequences of early medical interventions.
“It’s heartbreaking to hear the stories of people who were harmed by surgeries performed before they were old enough to speak for themselves,” Corkhill said.
“Many of them still live with the consequences of decisions they had no real part in.”
“Which could have waited until they were old enough to decide for themselves.”
You can download The Missing Voice here.
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