Intersex Ed at the UN

10/24/2016 09:13 am ET Updated Oct 24, 2017

"Boy or girl?"

It's the first question many new and expectant parents hear from their families, friends and co-workers. And more than 98 per cent of the time, the answer's clear cut: it's one or the other. But what about the rest of the time? Studies suggest that up to 1.7 per cent of babies are born with intersex traits, which means they have chromosomes, hormones or, in some cases, genitals that don't fit typical definitions of male or female. That's up to two million babies born every year with intersex traits.

Given how common intersex variations are - almost as common as people with red hair - it's perhaps surprising how few people are even aware that intersex people exist. That's something the United Nations wants to help change, with a new video and online platform launching today in the run up to Intersex Awareness Day on October 26. The aim is to encourage greater understanding of intersex issues, provide a platform for intersex people to tell their stories, and press for action to end the abuse and stigma that shadow many intersex people from early childhood on.

The UN's new video takes viewers through the dramatic moments leading up to the birth of a child as a new father's excitement turns to confusion on learning that his new baby is intersex. For too many families, that moment of confusion is made worse by a lack of knowledge and peer support. Too often, this is the moment when parents come under pressure to agree to surgery aimed at so-called "normalizing" their baby. For many, it's an agonizing decision. Those who opt for surgery are usually convinced - based on what they've been told - that they're doing what's best for their child. Few receive counselling or have an opportunity to speak with intersex children and adults or with other parents in a similar position - if they did, research suggests they might make very different decisions.

Surgery aimed at "normalizing" the genitals of intersex babies and young children can leave deep scars - physical, emotional and psychological. Commonly reported side effects include life-long chronic pain, incontinence, loss of sexual sensation, as well as depression and other mental health problems. In rare cases, some surgery might actually be needed for health reasons. But most of the time it's for cosmetic purposes: a misguided attempt to fix something that didn't need fixing in the first place.

It's hard to imagine any other circumstances in which parents would routinely agree to what is, in effect, unnecessary, invasive surgery on a child - especially when the risks are so high. "Medical experts destroyed my genitalia and reproductive organs" Pidgeon, an intersex activist from the United States, told the UN. "Why? Because they wanted to make my body cosmetically conform to their idea of what a "normal" woman should look like." Pidgeon and hundreds of thousands - possibly millions - of others have been dealing with the consequences of childhood surgery ever since.

Until recently, relatively few spoke up. Dr Kimberly Zieselman, Executive Director of interAct, an organization that advocates for intersex youth, thinks part of the reason is embarrassment. "Doctors often claim there's a "silent majority" of intersex people satisfied with the way they were treated as young patients. I used to be part of that "silent majority" - but I certainly wasn't happy. Doctors draw this false conclusion because most of their young patients haven't returned as adults to complain. But their silence is just as likely to be caused by stigma and shame."

The UN campaign features the voices of many intersex people determined to break the silence and talk about their experiences. One of them, veteran activist and author Hida Viloria, was spared the trauma of surgery as a child and says she feels blessed that her parents allowed her to be herself. "I want to encourage all parents of intersex kids to do the same", she says. "Trying to "fix" healthy babies' bodies to fit social ideals is innately prejudiced, and prejudice is never the solution. I know first-hand that you can have positive self-esteem and thrive as an intersex person when you're not exposed from an early age to the message that something is wrong with you." 

There are many things that Governments can and should do to protect intersex people from harm - including banning unnecessary medical procedures on intersex babies, establishing medical protocols on informed consent, providing relevant training to doctors, and strengthening anti-discrimination laws. These steps all require working closely with the local intersex community. Political leaders looking for inspiration could look to Malta, which is one of a handful of countries that have put in place the necessary safeguards. But, so far, few other countries have taken even first steps.

As important as legal reform is, real change also depends on raising awareness and overcoming stigma. For too long, intersex bodies have been seen as a problem to be fixed, when in fact it is society's obsession with fitting everyone into one of two stereotypical sex categories that's the real problem. In the UN's new video, the confused new father is quick to seek out information and make the journey from shock and concern to acceptance and celebration. It's a journey that many hope will in time become the norm, rather than the exception.

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The UN's new intersex awareness initiative has been developed by the UN Human Rights Office as part of its UN Free & Equal campaign. To learn more and access further resources, visit www.unfe.org/intersex-awareness and join the conversation on social media on Facebook (facebook.com/free.equal) and Twitter (@free_equal) using the hashtag #intersexawareness.