Comment: 'Curing' intersex is damaging and common

Morgan Carpenter is the president of Organisation Intersex International Australia, a community organisation that promotes human rights and bodily autonomy for intersex people.

One of the key human rights issues for intersex people is not the existence of binary genders, but what is done medically to make them conform to those norms, writes Morgan Carpenter.

Intersex, the I in LGBTI, is often invisible, assumed to be about sexual orientation or gender identity. In fact, intersex has more to do with the body.

Intersex people are born with sex characteristics that don’t fit stereotypical expectations for males or females. There are at least 40 known intersex variations, each different, with no homogenous intersex body or identity. Some intersex variations can result in visibly ambiguous genitalia, others don’t. Diagnosis can happen any time from prenatal testing through to adulthood.

Historically, intersex people have been regarded as something “other”, sideshow freaks or medical curiosities, objects for stigmatisation and discrimination. In more recent times, people with intersex bodies have been regarded as “disordered”.

One of our key human rights issues is not really the existence of binary genders, but what is done medically to make us conform to those norms. Over the last 60 years, diagnosis has led to surgical and hormonal interventions, often in infancy or childhood. For much of that time, a diagnosis was thought so shameful it often wasn’t disclosed.

It would be easy to imagine these issues are all in the past, a legacy of previous practices. We heard Dr. Shubha Srinivasan say how practices in the past were harmful, and how she hopes things have changed. She’s right, but there’s been no attempt at reparations.

As intersex advocates and peer support workers, we hear from adults with long histories of sexual and intimacy issues caused by “obsolete” surgical methods. We hear of attempts to recover childhood medical information, and even discrimination due to overt physical differences.

Not only do people with intersex variations suffer a legacy of clinical secrecy, of shame and stigma, we also suffer trauma due to medical intervention. And even so, this is not the full story.

The Australian parliament recognised our existence in 2013, with the inclusion of “intersex status” in anti-discrimination law, and a world-first parliamentary report into intersex health, and coerced sterilisation. We’re still waiting for a government response to that report, but we know a lot about current practices because of it.

Today, the testes of women like Bonnie are no longer routinely removed before puberty. Clinicians are better at diagnosis, and more likely to recommend a sex assignment based on “likely” future gender identity than surgical ease. There’s no longer a culture of secrecy around diagnosis itself. But much hasn’t changed.

The clinical language of “disorders of sex development”, rejected by community-led organisations, ensures that an intersex pregnancy and birth is still a problem to be “fixed”.

A Senate committee heard from clinicians that infants and children with ambiguous genitalia still face early surgeries. These happen when a clitoris is deemed “too big”, or a boy can’t stand to pee.

We regularly hear from parents with newborn infants. We hear how their child might be described as healthy - except for their intersex characteristics. Parents get a prompt referral to a surgeon, and maybe a late referral to a counsellor or psych. They might get a referral to a Toronto hospital website for background information, but no referral to an Australian support group.

We’ve seen medical papers that talk of the “pros and cons” of surgery, but only detail its necessity. That necessity is often based on stigma towards intersex people. Surgeries have the dubious aims of helping parents to love their children, preventing issues with baby-sitters or bullying in the changing room, and even improving marriage prospects. Genital surgeries aim narrowly to ensure heterosexual sexual performance.

Maybe surgeries do prevent some of those problems, some of the time, but there’s no firm evidence they do. Most often, treating a healthy body as a surgical problem is itself stigmatising. I know from my own experience that it’s not a good feeling to know that your body had to be modified to be acceptable to your family, and to society.

The science supporting current medical practice is contradictory and inadequate. Australian doctors themselves told the Senate they have “particular concern” about sexual function and sensation after cosmetic genital surgeries. One Australian hospital says that outcomes from current surgeries “remain to be established”, and yet there is no long term follow-up in this country.

Our National Health and Medical Research Council has heard that intersex variations are abnormal, disordered, defects, and people with them suffer psychological trauma. $5.5 million in public funds has just been invested in genetic research and testing - but no money goes to fund peer and family support.

We can’t keep removing the stigma of cosmetic differences with a surgical knife. It comes at the cost of future sexual function and choice. The Senate report said the status quo must change, and international human rights bodies are beginning to pay attention. Non-essential surgeries must be delayed until an individual can consent for themselves. Peer support must be integrated into clinical practice.

It’s ok to be intersex. The diversity of our bodies and identities are good things. We add to the richness of human existence. As the parent in The Feed’s interview said about us, “Let them enjoy their bodies, celebrate that difference”.

Morgan Carpenter is the president of organisation Intersex International Australia, a community organisation that promotes human rights and bodily autonomy for intersex people. 

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