Recently I discovered what it means to feel pride.

To belong to a community and to be so grateful that these people are your people, to be with people who care, who just get it, and who know that how things are right now is not even close to being good enough.   

At the start of March, 22 people came together in Darlington, Sydney. We came from all over the country, New Zealand and the United States. And we were all so different. We had different backgrounds, professions, genders and ages, as well as wildly different interests, lifestyles and life experiences.

But what we did have in common was being intersex. We had in common a lived experience of bodies that are medicalised, stigmatised and considered abnormal.

What is intersex?

The UN ‘Free and Equal’ campaign provides a helpful definition of intersex: ‘Intersex people are born with sex characteristics (including genitals, gonads and chromosome patterns) that don’t fit typical binary notions of male or female bodies.’ These differences may become apparent at birth, during puberty, when trying to conceive, through random chance, or may never be discovered at all.

It’s easy enough to give a brief definition of what intersex is. It’s easy to talk about how there are over 40 different intersex variations that fall under the term, and an endless number of variations within variations. It’s also easy to talk about how people born with intersex variations make up approximately 1.7 percent of the population, the same number of people born with red hair. What’s harder to talk about is, if so many people are intersex, why so few people have heard of us.

But what does being intersex mean in reality? For many intersex people, it means surgeries, hormone replacement therapy, confusion, mistrust and anger.  It means the unnecessary medicalisation of your body, and the need to confront the idea that there is something ‘wrong’ with you that ‘needs to be fixed.’ It means silence, solitude and shame.

The problem isn’t our bodies; the problem is what’s done to our bodies to make us fit into someone else’s idea of what a ‘normal’ body should look like.

The Darlington Statement

The coming together of 22 intersex advocates in Darlington was the first of its kind in Australia. Never before has the Australian/New Zealand intersex community come together in this way to voice our common concerns and present our needs and demands in a concise statement available for all to see. This meeting represents a huge step forward for the growing intersex movement and provides us with the language and vision for the future.

We proudly present to you the Darlington Statement, a 59-point declaration covering human rights and legal reform, health and well-being, peer support, allies, education, awareness and employment. The statement is a call for many things:

‘We call for the immediate prohibition as a criminal act of deferrable medical interventions … that alter the sex characteristics of infants and children without personal consent’

‘We call on governments and institutions to acknowledge and apologise for the treatment of people born with variations of sex characteristics, and provide redress and reparation’

‘We call for resourced access to necessary and appropriate health, medical and allied services and treatment’

And we call for so much more. But at its heart, we call for the recognition and respect of our human rights and for societies to accept and celebrate bodily diversity.

A community

I came to Darlington thinking I would be involved in discussions on rights and issues, and that is exactly what did happen. What I didn’t expect was to feel the overwhelming power of something bigger than all of us.  

As a community that is largely connected online, to be physically amongst a group of intersex people made me feel a sense of pride and connection I hadn’t felt before. I found myself immediately included in a community that cares deeply about each other, who listen, love, accept and support each other without question.

I recently looked at something I wrote dated June 2015, a few weeks after I first learned what intersex meant. At that point I didn’t use ‘intersex’ to describe myself – the word still seemed so foreign and incompatible with my own life and understanding of myself. But now I look back at what I wrote, and it may as well have been written by another hand. I wrote that I felt sorry for people who were intersex. I felt sorry, I said, because it saddened me that intersex people are so unacknowledged and overlooked. I felt sorry for intersex people because in this world it’s just easier not to be different.

I don’t feel sorry for intersex people anymore.

I feel sorry for a world that doesn’t accept us. I feel sorry for a world that hasn’t yet learnt from the resilience, love and kindness of the intersex community. And I feel sorry for a world that’s not ready – because we’re coming.

You can access the Darlington Statement at: oii.org.au/darlington-statement/