A landmark Australian Human Rights Commission (AHRC) recommendation to protect intersex people from “invasive and irreversible surgery” should prompt legislative reform across the country, according to a UNE law specialist.
Lawyer and intersex advocate Aileen Kennedy, a member of the board of Intersex Human Rights Australia (IHRA), has sat on an expert reference panel advising an AHRC inquiry for the past three years, and is now helping state and territory governments develop legislation to defer medical interventions until intersex children can give consent.
She hopes the AHRC’s acknowledgement of this “fundamental human right” heralds a new era of legal redress.
“This is a powerful and very welcome development,” says Aileen, a lecturer with the UNE law school, who has studied intersex law for more than 15 years.
“For decades, parents have been legally permitted to consent to most medical and surgical treatment for their intersex child. However, the AHRC has now deemed that medical intervention before a child is old enough to consent for themselves is a human rights violation.”
Decisions based on ‘outdated protocols’
Far from being rare, a range of intersex conditions are common. Some 1.7% of Australian children are born with biological sex traits that are not stereotypically male or female, or with characteristics of both. Sex is generally assigned to the child before they turn two, then reinforced by medical and surgical interventions.
“Treatment” commonly involves a series of medical procedures, a life-long program of hormone therapy and even sterilisation. Interventions have included genital cosmetic surgery, like reducing the size of a child’s clitoris, increasing the depth of their vagina or removing undescended testes – decisions the AHRC now says are often based on “prevailing social attitudes” and not medical necessity.
Bewildered parents with the very best of intentions can believe their child needs to be assigned a sex as early as possible
“Bewildered parents with the very best of intentions can believe their child needs to be assigned a sex as early as possible and that their body needs to be sculpted to look more male or female,” Aileen says. “However, the commission has concluded that decisions are commonly made on the basis of outdated protocols, little evidence and oversight, and before a child is allowed to naturally develop their gender identity.
“Most people would acknowledge that it is important for a child to have a gender and sex assigned, but there is still a lot of stigma and secrecy surrounding intersex people. In the past, intersex people have been seen as failures or mutants and sometimes their intersex history was hidden, even from themselves. Limited records have been kept regarding surgeries and their outcomes, and follow-up studies have been few and far between.”
Experiences of physical, psychological pain
While some intersex people are undeniably happy with the surgical results, the AHRC heard of the lived experiences of those who had experienced a loss of sexual function, incontinence, pain and scarring as a result.
“Multiple, follow-up surgeries are often needed to reinforce the original surgeries or to address complications as the child grows, and these continue right into adulthood,” Aileen says. “Such surgeries, based largely on psychosocial rationales, compromise a person’s physical health but also their psychological health.”
Life-changing decisions
In its report delivered on October 18, the AHRC recommended better protections for the child by limiting medical interventions without consent. It also identified the need for improved decision-making by medical practitioners and parents, and better systems for the approval and oversight of surgery, perhaps by an independent tribunal. The Federal Government will now be given time to respond to the recommendations.
This supports the view that parents should wait to see what gender their child develops and who they prefer to be – a decision that will affect them for the rest of their life.
“It’s an important acknowledgement that every individual, even an infant, has a right to choose what should or should not be done to their body,” Aileen says. “This supports the view that parents should wait to see what gender their child develops and who they prefer to be – a decision that will affect them for the rest of their life.
“We’ve seen how destructive intersex surgery decisions can be in families when the child does reach an age of consent, leaving parents feeling guilty and children resentful. The AHRC’s consideration of the processes, health and legal implications has highlighted the importance of parents being better informed and hearing from intersex adults with lived experience before any decision on invasive and potentially irreversible surgery is made.”
Aileen’s work on the AHRC’s expert reference panel has now parlayed into providing advice to the ACT and Victorian governments as they begin drafting formal legislation to enshrine similar protections for intersex children.
“I hope the AHRC recommendations will inform and support this wave of legal reform and prompt other states and territories to follow suit,” she says.
