‘I Don’t Want To See An Intersex Person Regret Their Body Anymore’: Why Intersex Rights Are Human Rights

When Cody Smith answers my phone call, they are palpably excited. Three years ago, they worked on the Australian Human Rights Commission report on intersex rights and now, it’s been published.

For the estimated 1.7% of the population that are born with genetic, hormonal or physical sex characteristics that don’t fit neatly into medical or social norms, intersex is the umbrella category they reside under.

“We’re still born male and female, but we’re born with non-typical characteristics,” explains Smith. “We're part of the natural diversity of [bodies] in the same way that redheads represent a natural hair colour diversity.”

But the glaring difference between redheads and intersex people is the stark inequality faced by them. It’s what Smith, who is currently working at Intersex Human Rights Australia, has been fighting for over the last eight years.

The landmark Human Rights Commission report puts forth 12 recommendations, including legislation that prevents medical intervention without the prior, informed, and personal consent of the person involved, unless it’s out of medical necessity. This means that going forward, intersex children won’t be forced to undergo surgery until they are at an age where they are able to consent.

Through consultation with intersex Australians, the commission heard about various genital surgeries which led to ongoing issues including fertility loss, urinary tract issues, and loss or diminution of sexual function, sensitivity and capacity to experience sexual pleasure.

The medical violence inflicted on so many is nothing short of trauma. As a 30-something-year-old, Cody tells me about the pain of recently hearing about a 10-year-old who underwent these invasive surgeries. “It really has turned into this intergenerational trauma, and there really has been no reason why this couldn't have been interrupted before now,” they say. 

Scattered throughout the report are the phrases “bodily autonomy” and “bodily integrity.” We are becoming increasingly familiar with the concept of consent in the realms of sex, but don’t often apply it to other aspects of life. 

“Bodily autonomy is the right to make decisions about your own body and the right to have consent and boundaries. When these procedures are largely cosmetic or aren’t necessary, and can cause really, really long-term consequences for people,” Cody says, pointing to the loss of sexual sensation, the need for follow-up surgeries, and reliance on hormone replacement therapy as examples. “We’re talking about very, very drastic decisions being made over the assumption that being normal is somehow better.”

The report found that while people’s experiences varied, the common themes that prevailed included distress, stigma, lack of social and personal support, and challenging interactions with the health system. Medical interventions that occur during childhood contribute to poor mental health, reinforcing isolation and alienation.

Cody also notes that because surgeries happen during childhood and in one’s teenage years, they can stilt a person's education and employment prospects. “It can have a really severe impact on schooling, and there's also some co-morbidities with learning disabilities when it comes to certain types of intersex. So what we find is that there's a lot of intersex people who don't get complete education [and] we have fairly significant rates of non-completion of high school and poverty in the intersex community,” they say.

And while high suicide rates and mental health illnesses are overrepresented in intersex communities, Cody stresses that being intersex isn’t the cause of these problems, but rather how intersex people are treated in society that causes these issues. 

As "intersex" is an overarching term that encompasses over 40 different conditions, personal experiences differ widely, and that includes people's journeys of diagnosis.

“Doctors encourage parents not to talk about surgery [and] essentially lie about it. And so, not even having the language to understand my experiences as I was going through them was something that limited my access to the community,” shares Cody.

People can be diagnosed at any stage of their life. While some may have noticeable traits from birth, others find out through experiencing an atypical puberty, or even when they’re trying to conceive a child.

But what’s been the most encouraging and comforting avenue of support for Cody is finding their intersex community. “[It made me] realise that these experiences that were so alienating were not isolated. We had these common experiences.”

I ask Cody what they wish for the future of intersex people.

“It's ok if an intersex person grows up and they decide that they need to have surgery done to help reaffirm their gender, but I want to see that be their choice made freely. I don't want to see an intersex person regret their body anymore. I don't want one unconsented surgery anymore.”