Wrong. Defective. Needing to be fixed. They’re all words many intersex people have heard before, but some are pushing for a national change.
“We are not major defects,” human rights campaigner Tony Briffa told 7.30. “We can have very happy fulfilled lives.”
Children are born either male or female but a very rare number will be born with biological variations in their sex characteristics, including in their hormones, genitalia, or chromosomes.
These children are sometimes called intersex or, more broadly, people with variations in sex characteristics.
While the community is tiny, some of its members hope proposed laws in the ACT will lead to big changes in the way society, and the medical and legal systems, treat them.
The bill will introduce tougher regulations on certain irreversible medical treatments on children and it aims to give them more say over what happens to their bodies.
A new review committee will need to approve such procedures and consider any wishes expressed by the child if they are able to.
As Tony Briffa, a local mayor in Melbourne, put it: “It’s my right, it’s my body.”
She told 7.30 she was not fully informed when she underwent surgery as a child in the 1970s.
“When I was seven, and my internal testes — my gonads — were removed, I was told that I was having tissues removed. I was seven. I thought they were talking about Kleenex,” she said.
“From the very moment I was born, I was pathologised, I was treated like I needed to be fixed, I couldn’t just be someone with an intersex variation even though there was nothing wrong with me.”
The ACT government heard from intersex people who had harrowing experiences.
“Everything from physical harm to psychological harm, extreme distress from individuals who felt they had their bodies mutilated without their consent,” Chief Minister Andrew Barr told 7.30.
The bill aims to delay procedures unless they are emergencies.
Lifelong consequences from irreversible medical procedures
Among the advocates of the proposed laws is 26-year-old Mimi Hall, who had surgery not long after she was born.
Mimi’s parents consented to the procedure, but now say they would have made a different choice had they been given the option of watching and waiting.
They were told Mimi might develop cancer if they did not operate. As medical understanding of certain conditions has evolved, some procedures have increasingly been avoided.
“I have a feeling that the risk of malignancy, had we not intervened, was probably overstated at the time,” Mimi’s father, Nigel Hall, told 7.30.
Mimi wishes she had more say over what happened to her during her years of treatment.
“The experience of medical intervention such as surgeries, and then having to go on hormone replacement therapy, made me feel like my body was wrong, alien and absurd and bad,” she said.
“But, actually, intersex people are natural and normal and a very beautiful part of our human experience.”
Intersex people critical of medical profession
In 2021, an Australian Human Rights Commission report documented the experiences of people with variations in sex characteristics.
Many were critical of doctors, and said they were misinformed or misled by members of the medical profession.
In one recent case, a 16-year-old underwent surgery but was not told the truth of the procedure.
The commission heard that while intersex people experienced stigma in society, “medical teams had given families advice to adopt behaviours that reinforced isolation, stigma and shame”.
One patient with different chromosomes was told by a doctor: “You will not be allowed to compete in the Olympic Games.”
Others described invasive examinations by groups of doctors: “Lots of men would look between my legs, put their fingers in my vagina, and talk about how abnormal I was.”
Some doctors still use terms such as disorder and abnormal rather than the more neutral “variation”.
“But what is normal?” asks paediatric endocrinologist Jacky Hewitt from Monash Children’s Hospital in Melbourne, who wants to change the thinking among some in the profession.
According to her, a baby is a gift.
“The work that I do with parents is to reassure them on the birth of a wonderful new baby,” she told 7.30.
Paediatric surgeons apologise but express concern about laws
The body representing Australia’s paediatric surgeons has broadly welcomed the ACT’s proposed laws as protecting children with variations.
“As an organisation and on behalf of all surgeons, we sincerely apologise for the surgery that was done in the past because it was inappropriate,” Peter Borzi from the Australia and New Zealand Association of Paediatric Surgeons (ANZAPS) told 7.30.
However, ANZAPS has reservations about the new review committee, saying it may cause delays in certain procedures.
Dr Borzi said the heavy penalties for breaches of the laws — up to two years in jail — might also discourage doctors from taking on patients.
The national branch of the Australian Medical Association declined to be interviewed.
Advocates want other states to follow the ACT’s lead to provide a nationally consistent approach, with Victoria moving towards introducing its own legislation.
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