The Darlington Dissection: the Preamble

I’m finally starting my series of posts on the Darlington Statement!

For those unfamiliar with the Darlington Statement, it’s a list of priorities and calls to action by a group of over 20 intersex advocates from Australia and New Zealand. The Statement arose from the very first Australian/New Zealand intersex community retreat held in Darlington, Sydney in March 2017 and I was fortunate enough to attend. For a bit more context on the retreat and the feels following it, please see my previous post.

The Statement is so important because it gives, for the first time, a common platform for the local intersex movement! It makes it very clear what we want and what is important to us. But, there’s a lot in there, and for those of us still learning about intersex issues I can imagine some of it probably wouldn’t make all that much sense.

The following series of posts will take a closer look at the Darlington Statement. They’re just my own thoughts and interpretations, and don’t reflect the views of the other individuals who helped created it. These posts won’t go into too much detail. Instead, I’m writing to help provide an introduction to the key issues raised.

This post only covers the preamble to the Statement, so don’t worry you can take it easy – it won’t be too overwhelming!



Preamble

A. Intersex people are born with physical or biological sex characteristics (such as sexual anatomy, reproductive organs, hormonal patterns and/or chromosomal patterns) that are more diverse than stereotypical definitions for male or female bodies. For some people these traits are apparent prenatally or at birth, while for others they emerge later in life, often at puberty (see UN definition). We recognise our diverse histories and use the word intersex inclusively, and acknowledging our right to self-determination.

Helpfully we begin with a description of intersex. Intersex refers to people born with variations in sex characteristics – be it sexual anatomy, reproductive organs, hormonal patterns and/or chromosomal patterns. Many people I talk to seem to think that to be intersex you need to have chromosomal differences, as if our chromosomes are the blueprint that dictates whether we are “really” a man or “really” a woman. This isn’t the case at all. Intersex describes so many variations – there are over 40 intersex variations, and variations within those. There is no one way to be intersex.

It is also noted here that intersex variations may become apparent at any point in one’s life or indeed may never be discovered at all. This is really important to remember. I think there’s an assumption that intersex people must know that they’re intersex or that you can tell if someone is intersex, but often this is not the case. The age at which variations become apparent in someone’s life can also be determinative of how they are treated and the pressures they face.

B. We observe that, despite the best efforts of intersex human rights defenders, discrimination, stigmatisation and human rights violations, including harmful practices in medical settings, continue to occur in Australia and Aotearoa/New Zealand.

The intersex movement in Australia and New Zealand has managed to achieve a lot in a very short amount of time. However, there’s still more work to be done. ‘Normalising’ surgery is still performed on children born with ambiguous genitalia in both countries and with a distinct lack of judicial oversight.

C. We observe the 2013 Senate Community Affairs References Committee report, Involuntary or coerced sterilisation of intersex people in Australia, and the 2016 Family Court of Australia case, Re Carla (Medical procedure). We observe the Concluding observations on the fifth periodic report of New Zealand by the UN Committee on the Rights of the Child in 2016.

These documents provide institutional recognition and evidence of recent and local violations committed against intersex people in Australia and New Zealand.

D. We recognise the international obligations of our countries, having signed the Convention against Torture, the Convention on the Rights of the Child, the Convention on the Elimination of Discrimination against Women, and the Convention on the Rights of Persons with Disabilities.

Intersex rights are human rights. Australia and New Zealand have committed to various international conventions recognising the human rights of all people. When people with intersex variations have surgery without informed consent, are discriminated against because of their bodies, and are not afforded appropriate treatment and care, our countries are violating their international commitments.

E. We note that intersex peer support remains largely unfunded, advocacy funding remains precarious and limited, and intersex-led organisations rely on volunteers to address the many gaps in services left by other, well-resourced health, social services and human rights institutions.

One of the constant challenges we face is finding the time and adequate resources to dedicate to realising the goals of the intersex movement. Underfunding has meant there is a heavy reliance on other groups who often do not have any intersex representation or expertise.

F. We acknowledge the kind support for this event from the National LGBTI Health Alliance, Twenty10, Astraea Lesbian Foundation for Justice, and an anonymous donor.

Without their assistance, the Darlington retreat and this Statement wouldn’t have happened – thanks so much!

G. Recognising these issues, this gathering of Australian and Aotearoa/New Zealand intersex community organisations and individuals in March 2017, meeting on Gadigal Land in Darlington, Australia, acknowledges and respects the work of support organisations and human rights advocates over past years and acknowledges –

 

  1. The Malta Declaration of the Third International Intersex Forum in 2013.

The Malta Declaration came out of the Third International Intersex Forum, a gathering of 34 intersex activists from around the world. The Declaration was important in providing the first list of demands at an international level on intersex issues.

  1. That intersex people exist in all cultures and societies, throughout history, and that the existence of intersex people is worthy of celebration.

Intersex people have always existed and will always continue to exist. I still can’t quite understand why this is considered a problem, and why intersex bodies are consistently problematised and considered abnormal – this diversity should be celebrated! What is ‘normal’ is already so subjective and culturally determined.

  1. The diversity of our sex characteristics and bodies, our identities, sexes, genders, and lived experiences. We also acknowledge intersectionalities with other populations, including same-sex attracted people, trans and gender diverse people, people with disabilities, women, men, and Indigenous – Aboriginal and Torres Strait Islander, Tangata Whenua – and racialised, migrant and refugee populations.

Intersex people don’t just fall into some ‘other’ category. Like everyone else, we have different bodies, identities, genders and very varied lives. Often these identities intersect with other identities too. Not recognising this diversity can lead to attempting to address intersex as if we all face the same issues. It can also isolate people from the intersex community since it presents the idea that there is only one or a limited number of ways and experiences to be intersex.

  1. That the word ‘intersex’, and the intersex human rights movement, belong equally to all people born with variations of sex characteristics, irrespective of our gender identities, genders, legal sex classifications and sexual orientations.

Following on from the last point, anyone born with variations in sex characteristics can use intersex to describe themselves and their experiences, and can be a part of the movement advocating for the human rights of intersex people. While we are diverse people with different understandings of our bodies and ourselves, none of this detracts from our commonality of intersex and often shared experiences of stigma, shame and pressures to change our bodies.

  1. Our rights to bodily integrity, physical autonomy and self determination.

This is the very core of what the intersex movement is fighting for! The right to have our bodies whole and unviolated, the right to make informed choices over our own bodies, and to create our own lives and pursue our own development. We want to live with our own decisions.

  1. Our opposition to pathologising terminology such as “disorders of sex development”, not only because such labels are inherently disordering, but also because this promotes the belief that intersex characteristics need to be “fixed”.

Language provides us with the framework within which we can understand the world. When it comes to describing people with intersex variations, the language used has tried to frame our bodies as problems to be fixed. The use of “disorders of sex development” or DSDs implies that there is one set end goal of human development and intersex people somehow missed the mark. By using the language of disorder, immediately we suggest a problem, and problems must be fixed. Such a view fails to recognise that we are just another way of being. If you’re not sure what language to use all you have to do is ask, see how people with intersex variations describe themselves, and look to statements made by intersex groups.

And that’s just the preamble! There is so much more to cover here and in some ways I feel like I’m doing the Darlington Statement a disservice by only talking about things so briefly. I hope though that this introduction will help you understand a bit more about where the movement is coming from and what we are seeking to achieve!

Stepping forward

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, ages, and wildly different interests, lives, 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.

Advocates at the Darlington retreat. Photo credit: Phoebe Hart

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% 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 statement covering human rights and legal reform, health, and wellbeing, 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 care 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 under 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: https://oii.org.au/darlington-statement/