‘It’s not surgery, it’s mutilation’ – Why it’s time to ban forced medical procedures on intersex kids

Words: Cliff Joannou
Photography: Collier Schorr and Isabella Giancarlo

Intersex people are born with genitals or internal sex organs that fall outside the more common male/female binary. Internationally, being born intersex is as common as being born with green eyes.

But every year, hundreds of thousands of people undergo surgery as babies or children to “correct” their gender with the choice determined by a doctor, always without consent and with little advice offered to the parents about the wider implications of such an invasive procedure.

This can, and often does, lead to trauma for the intersex person that resonates into adulthood.

American activist Pidgeon speaks to Attitude about their campaign to #EndIntersexSurgery…

How common is being intersex?

Between 0.5 per cent and 1.7 per cent of the population is born with sex traits that would qualify them to be considered intersex. Worldwide, that’s 129 million people. So it’s not so much that we’re rare, but we’ve been made invisible.

How common is intersex surgery? Is there access to useful data or is it still very much an under-researched area?

No one knows for sure because hospitals n the US aren’t required to track this iformation or make it public, but hat we do know is that medically nnecessary surgeries forced on us and meant to “normalise” the appearance of our genitalia, in addition to things like forced hormones and castrations, are still occurring. I get emails from parents every week attesting to this. Everything they do to us, in an attempt to make us something that we’re not, amounts to conversion therapy via forced hormones and genital surgery — and that’s not what our society should be doing to young kids. As long as even one intersex person is not allowed their human right to bodily integrity and autonomy, we won’t stop fighting to #EndIntersexSurgery.

What are the most damaging effects of forced surgery?

Many of us know about the harm caused by LGBTQ “conversion therapy”. But most don’t know about the physical, surgical harm faced by intersex youth. Some doctors still believe it’s OK to permanently change the genitalia and other sex traits of intersex minors by recommending unnecessary surgeries to parents. This is connected to an historical belief that changing intersex bodies will stop kids from growing up gay or transgender. Bo Laurent, the founder of the modern intersex movement in the early 1990s, speaks about it in the documentary Intersexion, which is free on YouTube and available on Amazon Prime. It sums up with: “It was like walking into a war zone, people treated me like a freak, they lied to me, they cut me up, they harmed me in ways that prevent me from being romantically or sexually intimate with people. They caused me to feel my body is disgusting.” Increasingly, evidence shows the harm done by surgeries performed without informed consent, which include pain, loss of sensitivity, scarring, and even sterilisation, as well as psychological consequences such as PTSD and the risk that the sex assigned will not match one’s gender identity. Because of these risks, intersex genital surgeries are now considered abuse by every major human rights organisation that has looked at the issue.

How do you deal with the knowledge that you underwent such an intrusive procedure?

Like most people who’ve experienced trauma, especially sexual trauma, I’ve struggled to reclaim autonomy over my body. It has had severe effects on me, both physically and mentally. I deal with it like most people, I guess. When I was younger I tried to numb the pain with alcohol, since that was the substance most readily available. Later on, when I was prescribed [anti-anxiety medicine] Xanax, I realised what life could be like without constant anxiety and I quickly fell in love with that feeling. Sadly, it was addictive for me and I had to wean myself off it. I only use it for emergencies now. I’ve also tried things such as meditation, yoga and exercise — I ran a half marathon last year. I’ve been in therapy on and off for more than a decade. Right now, I’m trying to come to terms with and acknowledge the reality of what they did to me and how it affects me day to day. For instance, right after my last surgery to create a vagina that could “receive my future husband” when I was 10 years old, I started picking the wound, which prevented it from ever healing properly. Eventually, this led to me scratching and picking self-made wounds and scabs on my body I created whenever I was stressed or anxious. I’ve learned this is repetitive behaviour called dermatillomania. It wrecks my skin and is a source of great frustration and shame. I’m currently working with my therapist and psychiatrist to treat this and my anxiety, depression and attention deficit hyperactivity disorder (ADHD). I’ve just started taking an SSRItype anti-depressant, which I’ve read has been helpful for some people who pick. I’m hoping it can help. But it gets more and more difficult to smile or find joy each day. Unlike with purely emotional trauma, I can’t just make the parts of my body that they took away grow back, and that will haunt me for ever.

Have you been able to forgive your parents for allowing you to undergo surgery?

I forgave them because I know they were caught up in this toxic system that traps our parents in a web, one that makes them believe that their intersex kid won’t have a “normal” life, and won’t be able to be loved. But I will never forgive the surgeons and their accomplices. They are poor excuses for human beings who profit from our suffering. They have harmed so many — harm that ripples out — and have never been held accountable.

What are the challenges we face in changing the perception of what it means to be intersex in the wider world?

We face so many challenges because most people don’t have an accurate understanding of what intersex is. It’s difficult to talk about our human rights when people are still confused about what intersex is in the first place. Also, another huge challenge is that doctors have so much authority and respect in our society that their word always seems to trump ours. They’ve managed to wield this authority to paint us as broken and/or disfigured. It’s difficult, as intersex activists, to go up against the voice of medical authority. So, we need to stop this from happening and let people know that what they’re doing to us are surgical and hormonal forms of conversion therapy. We need the world to know that there is nothing wrong with us, we don’t need to be changed. Intersex is a natural and normal way of existing. What’s not normal is all the fucked-up shit doctors do to our bodies, including forced sex changes, forced hormonal treatments and lying to us. We don’t need to “fix” intersex kids, we need to fix the binary.

What are the next steps in your campaign?

The organisation I co-founded with Sean Saifa Wall, Intersex Justice Project (IJP), has three main demands. They are: 1) A public apology from the institutions that have harmed us since the Fifties. 2) An immediate end to medically unnecessary surgeries on intersex kids. 3) Reparations for intersex survivors. The next step is to keep building the worldwide #EndIntersexSurgery movement. Things are really popping off in so many parts of the world, it’s amazing to witness. Every week it seems there is another win for intersex people. In the past year, we’ve seen intersex people added to the census in Kenya, medically unnecessary surgery being banned in India’s Tamil Nadu state, and the announcement that New York is proposing a bill to delay surgery until an intersex child can grow up and give consent. Another amazing win was when IJP put a call out to our followers to organise their own #EndIntersexSurgery protests, and many groups did — including Voices4 Berlin and London. It was so heartwarming. Each one of us has the ability to teach another person about the injustices faced by intersex kids.

 

What can intersex people reading this do to seek help or support?

First, please seek out therapy if that is something you want and have access to. Therapy can be a useful tool for those who have been isolated and made to feel deeply ashamed about their body. If you’re an intersex person under the age of 30 or so, look for the group on Facebook called iSpace, a private group that supports young intersex people all over the world.

There’s also the Androgen Insensitivity Syndrome Support Group (AISSG), for all age groups, which is based in the US, and has members from all over the globe. That group consists of various Facebook groups, and members meet in person once a year. If you’re in Latin America, contact Brujúla Intersexual. Laura Inter, the director, is fantastic and committed to supporting intersex folk in the region. If you’re based outside the US or Latin America, you can search online for intersex support plus your country name… or just find me on social media.

For more information visit pidgeonismy.name and intersexjusticeproject.org