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/

The inequality of marriage equality

It’s been a long time coming but I’ve finally decided to weigh in on the discussion over the same-sex marriage plebiscite! I’ve avoided it so far, mostly because it seems to me that almost everything that can be said has already been said, but also I just don’t think marriage is that big of an issue compared to a lot of other LGBTIQA* rights. Don’t get me wrong, it is very important, particularly regarding the general social comment it makes that people in the LGBTIQA* community are ‘lesser’ than heterosexual couples. However, marriage tends to dominate discussions of rights when there are so many other important issues like, say, not surgically changing babies to conform to a female or male sex, or not requiring people who are transgender to undertake surgery to change the sex marker on their birth certificates. But, now that the Coalition has introduced the Plebiscite (Same-Sex Marriage) Bill on 14 September in the House of Reps, we have a bit more detail about what’s going to happen in the lead up to the plebiscite if the bill does get the support it needs. We also know that the wording of the question will be this:

“Should the law be changed to allow same-sex couples to marry?”

Unsurprisingly, this question is really disappointing from an intersex perspective and for everyone who doesn’t identify strictly within the sex/gender binary. It means that even if the plebiscite goes ahead, and even if a simple majority voted for the change, and even if the Marriage Act 1961 (Cth) is amended to allow for same-sex couples to marry, intersex people who identify as intersex or something other than male or female still cannot marry. I guess some of us are just more equal than others when it comes to marriage equality.

heartGiven these developments I thought it would be a really good opportunity to have a closer look at what the law actually is regarding the legal recognition of intersex status/not identifying as male or female. It seemed to me that, on the face of it, intersex marriages would only be problematic if an intersex person chose to identify outside of the male/female binary. After looking through all the state/territory Births, Deaths and Marriages Registration Acts, amendments, other relevant legislation and the (albeit small amount of) case law I can confirm that yes, this is mostly true!

Looking through all this it appears that even if we do get legislation enacted that introduces same-sex marriage in its current phrasing, there are two scenarios when it comes to intersex marriages:

  1. If you’re intersex, you probably can get married if your birth certificate states you are female or male (although the case law throws a bit of a question mark over this as I’ll get to later). So if you’re intersex and you do identify as male or female then that’s great! Just make sure your partner is of the opposite sex for now until we get this legislation passed.
  1. However, if you’re intersex and you don’t identify as either male or female, then if you want to get married you’ll still have to pick one, even though that’s not really who you are. Otherwise, if your birth certificate states that you’re neither male nor female, you can’t get married.

After having a look at the different states and territories though, unsurprisingly it’s just not that easy to be legally recognised as anything other than male or female. Practically speaking then, this second scenario is not going to be all that common. But that’s not a good thing. It just shows that we have a big problem with the legal recognition of sex and gender identity. Fortunately the law is moving slowly in the right direction. In the ACT and NSW you can have sex descriptors that are not female or male on your birth certificate, and there’s a bill in the Victorian parliament at the moment that allows for sex descriptors that are ‘male, female or any other sex’. So once more intersex, agender, non-binary etc. people do become recognised, how we define marriage will become increasingly problematic for this group.

The situation currently regarding whether you can have your birth certificate registered as neither male nor female really depends on which jurisdiction you were born in or live in, since it is the states and territories that manage the registries of births, deaths and marriages. And of course, they all have their own rules. While there are some similarities, there’s no consistent legislation across the jurisdictions and it gets a bit complicated about what can be recognised on your birth certificate and whether any change would be recognised in another state. As I’ve mentioned, only two jurisdictions, the ACT following the 2014 amendments to the Births, Deaths and Marriages Registration Act 1997 (ACT), and NSW following the 2014 High Court decision in NSW Registrar of Births, Deaths and Marriages v Norrie [2014] HCA 11 (‘Norrie’), allow for birth certificates to be changed to neither male/female. While it’s possible that other jurisdictions might also allow for something other than male/female following Norrie, it depends on the exact wording of the relevant legislation and how similar it is to the NSW model as to whether that is actually the case.

It’s also been super interesting to look at the case law on this! I’ve been told this next section gets a bit law heavy and I do apologise. I’ve tried to make it as clear as possible but even if it doesn’t make any sense, it’s all just reaffirming the points I’ve made above!

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So back on track – there’s only been one case in Australia on intersex marriage in 1979 before the Family Court of Australia in Brisbane. The case, In the marriage of C and D (falsely called C), involved a man who, at the age of 21, underwent surgery that led to the discovery of his intersex variation. He then had further surgical operations to confirm his male sex assignment. His birth certificate stated that he was ‘male’, and he had been raised as and always identified as a man. He married a woman, and then, after about 11 years of marriage, his wife found out about his intersex variation. She sought an application for a declaration of the validity of the marriage, claiming that due to his condition her husband had been unable to consummate the marriage. What did the court decide? Well, not only did the court dismiss the application, but it also annulled the marriage, reasoning that an intersex person can’t legally marry since marriage can only be between a man and a woman. This outcome seems pretty ridiculous now, and it has been criticised since, particularly in the NSW Family Court judgment of Re Kevin in 2003.

Re Kevin however involved a female to male transsexual* person, and not someone with an intersex variation. Since some of the issues were a bit different, C and D was not completely overruled in this case and never has been which is a bit scary to say the least. However Re Kevin is still relevant – in this case it was held that the question of whether someone is a man or a woman is to be determined at the date of marriage, and it wasn’t necessary to look at the circumstances at the time of birth. Following this judgment, while an intersex person who identifies as male or female (including probably the husband in C and D) may now be able to validly marry, it seems that C and D is still likely to apply to those who don’t identify as either. In Re Kevin, Nicholson CJ listed a number of circumstances that strengthened the case that the husband was a man at the time of marriage, including that he had undertaken ‘a full process of transsexual reassignment, involving hormone treatment and irreversible surgery’. Since then, the High Court case of AB v Western Australia in 2011 found that it is not necessary to require surgery to obtain a change in gender recognition certificates in WA (thank goodness – although most state/territory Acts still require reassignment surgery). However, the point still stands that Re Kevin has left open the question as to whether intersex people who don’t want to or haven’t yet made a ‘final’ choice to live as either male or female can marry.

As I’ve said, there just hasn’t been much case law on these matters, and so while C and D was some time ago it seems that this is currently where the law stands, where potentially intersex marriages could be nullified if one of the parties in the marriage sought to do so, and where intersex people who don’t legally identify as either male or female cannot marry.

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Coming back to the Coalition’s recently introduced bill. If eventually amendments are made to the Marriage Act 1961 as it is currently worded, intersex people will remain excluded from the right to marry. On the other hand, the Marriage Legislation Amendment Bill introduced on 12 September is much more inclusive and aims for true marriage equality. It was introduced by Labor and also separately by the Greens (Adam Bandt) along with two Independents (Cathy McGowan and Andrew Wilkie) on the same day. This bill seeks to substitute the definition of marriage to ‘the union of 2 people to the exclusion of all others, voluntarily entered into for life’. What’s more, it also seeks to include a section stating that ‘[t]he object of this Act is to allow couples to marry, and to have their marriages recognised, regardless of sex, sexual orientation, gender identity or intersex status.’ Maybe there is some hope after all!

 

 

*I’ve used ‘transsexual’ here as this was the term used in this case

What’s in a label?

Today I’m writing about the use of the ‘intersex’ label, why most people with intersex variations don’t use it, and what difference labels make anyway. As I always like to preface, I don’t speak for all intersex people, and these are just my own thoughts and general perceptions from what I’ve read elsewhere.

I find this topic interesting because for me, finding out that I had this particular “condition” was completely fine, but finding out I was “intersex” bothered me quite a bit. I think this in itself is very telling about my own associations with the word and the thought that maybe this changed who I was in some way.

label

I first found out about my “condition”, as it was so called, when I was 18. It really just did not bother me at all. In fact, I thought, and still do, that I had a way better deal than everyone else.

No doctor ever used the term intersex though, and looking back I suppose in one sense there was never a strict need to – they told me what my body was like, that this was the name of the condition and what options I could take if I wanted to change my body. For the most part my doctors dealt with me pretty well, and I was fortunate enough to be old enough to understand and make my own decisions. On reflection, though, I would have much preferred a doctor to use the word intersex, and tell me what it meant. Instead, I stumbled across the term and its applicability to me by chance years later. I was up late one night doing research for a law essay and I was skimming over the 2013 Senate report on Involuntary or Coerced Sterilisation of Intersex People in Australia, thinking how on earth have I lived this many years of my life without knowing that this exists. The report then listed a number of intersex conditions and it was at that point that I realised that these things not only happen, but happen to people like me.

Maybe not everybody would like to know they’re intersex, but by not ever using the term my doctors shut me out from knowing that a whole distinct community existed, while also reinforcing notions of what male and female bodies should look like. This could have been an opportunity to open my mind earlier to the idea that you could be neither or fall somewhere in between, and that it is actually far more common than I was led to believe. I think being aware of this would be really helpful, particularly if you’re young and still developing. It also meant that it was only much later and, as I said, by chance, that I started to think about the systemic issues that face intersex people generally, or indeed had the thought that I could identify as an intersex person.

Most people with intersex variations don’t (at least openly) use the label. I suspect at least part of the reason is because some of them may not know their particular variation falls under ‘intersex’, as was my experience. Perhaps another reason is because it often seems unnecessary for the most part – people generally relate to others based on their gender and not their physical make-up. Someone might have really long legs, or curly hair, or green eyes, but these are just physical characteristics they have and they may not see these attributes as an inherent part of their identity. In the same way, a number of intersex people may refer to themselves as having intersex status, but otherwise identify as a man, woman, non-binary, gender fluid etc.

I’ve started using the label mostly because it’s easier to talk about the broader issues faced by people with these variations, and not just particular challenges faced by people with my specific variation. I suppose what I’m still getting used to is that all labels have particular associations and stereotypes attached to them, even when there’s a huge amount of difference between the people and experiences under any one label. Nevertheless, having a label does make a big difference – it often means having a community to connect with, greater accessibility to information, and, as is my main reason for using the intersex label, it means having the language to start talking about these issues with other people. Without labels, we pretend that everyone is the same and silence differences from the start.

For some other thoughts on this topic, I’ve run some questions by my mate Cody. Cody is a couple of years older than me and identifies as intersexed/agendered. They grew up subjected to various medical tests, often without fully understanding what they were for, before learning they were intersex at the age of 17. Cody’s been thinking about these issues for a lot longer than I have, and has kindly allowed me to share their insightful comments!

Why do you identify as intersexed?

I mean the short answer is that we don’t live in a world that is kind to people born intersex. Reform needs to happen, discussions need to facilitate that reform, and those discussions need to involve as many intersex voices as possible.

So first and foremost, I openly identify as intersex because I want to stand up and be counted in that discussion. It matters to me that I could help change the intersex narrative from one of well-intended harm, disenfranchisement and loneliness into one that’s more positive.

It’s also been important to me because it’s helped me find others. My variation was always described to me as one in a million and as something other people didn’t go through or talk about. Being visible helps me find people, and for them to find me. At the end of the day, I can put so much shame to rest.

Has the use of the label ‘intersex’ changed how you see yourself?

Yes and no.

There was a point in time where it felt like this was reason I was the way I was. Why I was so deeply uncomfortable with being feminised. Why I didn’t seem to be growing out of a tomboy “phase”. Why I felt afraid in hospitals and uncomfortable around doctors. Why I hated so many coming of age milestones that my friends more readily embraced. It felt like I had been given the last pieces of a jigsaw puzzle.

What it actually meant was that I was given the first pieces of a whole new jigsaw puzzle. It gave me a starting point to explore concepts of sex and gender that I hadn’t before. I found trans and genderqueer communities online where I could safely explore what gender meant to me. To me, that ended up meaning chest binding and cross-dressing, mixing up pronouns, and taking a gender-neutral name. I eventually came out to people as agendered. As a label, that’s had far more impact on how I see myself. So whether I am agendered because I am intersexed seems like a moot point. To some extent it makes me feel like I’m living my truth as authentically as possible, but in actuality it allows me to feel safe and happy. These days, I hold onto intersex as a label because of what it allows me to do, and how it helps other people.

Do you have any problems with the use of the intersex label for yourself?

No. It describes something I am, experiences I’ve had, and rights I’m fighting for. I’m proud of all of that. I wouldn’t be out if I wasn’t.

Why do you think most people with intersex variations don’t identify as intersex?

I think for a lot of people, being intersexed is just not that big of a deal. It hasn’t particularly changed or impacted their life. Most are happy healthy people, and there’s no point in giving other people a reason to think of them differently. When you see how other identities are picked apart and scorned by wider society, it makes perfect sense. For plenty of people, there’s also an inherent fear of being vulnerable when being open about something like that. It gives the jerks of the world something to attack you with. Even good people can get the wrong idea sometimes. While we may live in a society that isn’t openly hostile towards intersex, it’s not hard to envision ways in which that could happen, whether it comes from medical pathologisation or ending up as the next punching bag in the queer rights movement. In fact, all you have to do is look into the history of the word “hermaphrodite” to see how badly intersex has been misunderstood, stigmatised, even fetishised. The fact of the matter is, many intersex variations are invisible, and there’s little incentive to be visible.

What was your reaction when you first heard the term intersex?

It was at the same time as I found out [about my variation]. I remember being mostly confused. There was obviously only so much my mum knew and could pass on in a single conversation. It took a lot of reading just to figure out enough to really react to anything.

Do people treat you differently once they learn you’re intersex?

Broadly no. There was a bit of nastiness with someone who had started telling people I was transgendered. A couple of people who decided to remove themselves from my life spared me some angst I’m sure. For the most part, though, friends have been wholly supportive.

A lot of my family found out the whole truth towards the end of last year, when my story was featured in a news article. It really seemed to break down some barriers. It helped them understand my quirks a lot better, and gave them reason to be proud of me.

If anything, I feel like I get the most inconsistent treatment from doctors. With particular issues it sometimes seems they get too focused on turning it into a “weird intersex thing”. I understand how they might feel the need for caution, but I actually think it comes down to education, and how this topic is dealt with from medical school to medical school. Thankfully, there seems to be plenty of doctors coming through who are more conscious of these issues. Trying to reach out to the wider medical community that are more set in their ways feels like yelling at a brick wall though.

I have also dealt with some hostility from intersex people who feel that I can’t best represent them while also making a case for queer identities and rights. It’s unfortunate, and it’s something that needs to be addressed within the community, but I’m not about to let that stop me standing up for myself.

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I’m so grateful that Cody has allowed me to share their thoughts and offer another intersex experience! I would also be really interested to hear about how other people first reacted when they were initially confronted with various labels that could describe/be applied to them – anything from mental health, to physical conditions or other LGBTIQA+ identities. Did it change how you saw yourself? Did you embrace the term, or reject it?

But are you woman enough?

It’s only a week out to the Rio Olympics so I’m taking this opportunity to take a look at some of our assumptions around sex categorisation in sport and what this means for female intersex athletes!

rio

When it comes to sport, we immediately assume that there is a necessity to separate men and women. This just seems like common sense – we generally think that men and women have different strengths and skills based on their physical capabilities, and while we recognise that this does not necessarily apply to all men or all women, as a general statement we believe this to be true. We also believe that these differences lie in the testosterone levels of men and women, and that this explains why men on average outperform women in comparable events.

Unfortunately things are never so simple.

Levels of testosterone vary incredibly even within male/female categories, and while it is true to say that on average men have a much higher level of testosterone than women, there is so much variation and crossover between the two that it is actually impossible to determine whether someone is a woman or a man solely based on their testosterone levels. A number of elite male athletes fall into the “normal female range” and, similarly, a number of elite female athletes fall into the “normal male range”. The differences in these athletes may be explained by intersex variations or simply just that some people naturally produce more or less testosterone. Interestingly, there appears to be a significant lack of evidence on the effects of naturally occurring testosterone on athletic performance, and no proven difference in performance between women with high levels of testosterone (high T) and “normal” levels. The Court of Arbitration for Sport has found that even if there is a difference, no evidence suggests that high T in women offers any greater advantage than that offered by any other biological variation. To put it simply – testosterone levels alone can’t predict an individual’s athletic performance.

Now, I’m not saying we shouldn’t divide sport by male and female categories. While it can get problematic for people who are trans** or intersex, it clearly is an easy division that also makes a lot of sense regarding general physical capabilities. The problem is that we can’t determine exactly what it is that provides athletic advantage. Natural levels of testosterone certainly may and probably do have some impact on athletic capabilities, but there are also so many other physical attributes that also impact performance – be it longer legs, bigger hands or feet, bigger lung capacity, faster reflexes, the number of fast twitch muscle fibres and more – and depending on the sport, different attributes will be more valued. Most of these are not really associated with a particular sex. Certainly some are – for example, men are on average taller than women and have leaner body mass – but there is still a huge degree of variation amongst those in a particular sex and crossing over into the other sex. So while I think it makes sense to divide men and women in sport, it’s important to recognise that there’s a fairly complicated interplay of attributes that contribute to an individual’s athleticism, which evidently can’t be solely reduced to their testosterone levels.

However, because of this binary division we’ve created, problems arise for those who don’t easily fit. By so strictly dividing everyone into two groups when we’re actually trying to accommodate a wide spectrum of people, we’re forcing some people into categories that don’t completely describe them. We then become surprised when it doesn’t, and our response is to change them to fit into one of these groups.

Lead sporting bodies have come up with various arbitrary rules to categorise athletes as men or women, but historically this hasn’t proven very successful at all. “Gender testing” first began by international sports bodies in the late 1960s to ensure that men weren’t pretending to be women to win medals, but from then until now it’s never once occurred. Instead, sex testing has operated solely to stigmatise and hurt women with intersex characteristics and/or high T. From the early years of rudimentary physical examinations of external sex characteristics, to chromosomal testing, to the latest iteration of sex testing based on testosterone levels, the International Olympic Committee (IOC) and International Association of Athletics Federation (IAAF) have consistently failed to find a single test to determine whether athletes should compete as men or women. And they never will. They won’t be able to find one simple test because biologically there’s no one simple distinction. I came across this cool interactive that places you as a medical examiner for the upcoming Games – check it out for a bit of an insight into some of the difficulties that can arise in determining sex!

Caster Semenya underwent gender testing in 2009 when her 'masculine' appearance raised concerns (photo from How Africa)
Caster Semenya underwent gender testing in 2009 when her ‘masculine’ appearance raised concerns (photo from How Africa)

The outcome of these unsuccessful attempts to easily place everyone into the binary is that we discriminate against and hurt those who don’t. We make them the problem, when surely the real problem is our inability to accommodate what is a natural variation of the human body. The recent high profile cases of Dutee Chand and Caster Semenya reflect the pressures placed on female intersex athletes and those with high T levels. What they’ve had to go through in the last few years is really upsetting and has hugely affected them emotionally and professionally. Both of them have been denied the opportunity to compete in events, subject to intimate examinations, publicly humiliated, had the success of their athleticism reduced to their “masculinity”, and essentially had their sex determination trialled in the media. These women are not drug cheats and don’t deserve to have their athletic careers forever associated with speculation about their bodies. If we’re going to try and divide everyone, we should do it respectfully, with sensitivity and in private, and without calling individuals’ gender identity into question. We also need to appreciate that some people will simply be difficult to place, and this does not mean we should make them change their bodies to fit in.

Of course, the concern inevitably arises that competitors with these variations have an unfair advantage, enough to warrant that they be excluded from participation altogether or should participate with the men. But is this actually true?

The main intersex variations we’re looking at when it comes to international competitions are variations involving hyperandrogenism. This refers to the excess of androgens in the body, including testosterone. As I’ve mentioned, as with any other human characteristic you can think of, even within a “normal female range” and a “normal male range” there is wide variation and also a natural degree of crossover between the two, and it may not relate to having an intersex condition at all. However, the IAAF decided to arbitrarily determine that to compete as a woman you must have testosterone levels of 10 nanomoles per litre or below. The IAAF (and the IOC) says they’re not trying to determine gender, although I feel like telling a woman she must compete with the men is effectively telling them that they’re not feminine enough to be a woman. The outcome of all this is that if you’re a woman with high T (above 10 nmol/L) you either have to compete with the men, take hormone-suppressing drugs, undergo surgery to remove hormone producing organs, or not compete.

The interesting part is that the IAAF has failed to bring any scientific evidence to the Court of Arbitration for Sport to show that naturally producing testosterone actually has much of an effect on your athleticism. This is in contrast to taking the synthetic hormone that does enhance performance, but this can and is tested for. What’s also interesting is that male athletes are not questioned over their levels of naturally occurring testosterone and don’t have their gender identity or suitability to compete called into question. This is where the sexist element of sex testing comes in, because we don’t check and scrutinise the sex of men in sport at all. Even if it’s found that they have exceptionally high levels of (naturally occurring) testosterone that’s entirely okay. The IAAF has said this is because there is no evidence that men with exceptionally high T have an advantage. Yet when it comes to women, we are automatically suspicious of those with high T (regardless of whether it actually improves their performance), subject them to embarrassing and invasive examinations, pressure them to change their bodies and cast doubt over whether they deserve to be there.

Dutee Chand returns to competition after the 2015 CAS ruling (photo from Indian Express)
Dutee Chand returns to competition after the 2015 CAS ruling (photo from Indian Express)

Fortunately there have been some recent positive changes to policies regarding hyperandrogenism in women. The IAAF policy initially saw Chand dropped from the Indian national team in 2014. She missed the Glasgow Commonwealth Games and was told to reduce her testosterone levels. Chand challenged this policy and in July last year, the Court of Arbitration for Sport suspended the IAAF’s regulation for two years on the basis of a lack of scientific evidence that naturally produced high T enhanced athletic performance. This is great news for Chand and Semenya, both of whom will be competing in the upcoming Games. However, while they can compete, speculation remains over their bodies and whether they have an unfair advantage, and this will surely escalate if either of them do particularly well in their events.

Disappointingly, too, in response to the Court decision the IOC issued guidelines last November supporting the IAAF regulation on hyperandrogenism. The IOC encouraged the IAAF to find the evidence and arguments to bring to the Court and reinstate their regulation. Essentially in doing this, the IOC has chosen to endorse an unsupported regulation and has also given no clear guidance on its approach for the upcoming Games (given this regulation is still suspended).

As it stands, presumably athletes with intersex variations who identify as women can compete as women, regardless of their testosterone levels. There are concerns though that given the lack of clear policy female athletes will try to bring down their natural levels of testosterone into a “normal female range” as occurred previously when the IOC had a similar rule to the IAAF in the London 2012 Games and Sochi 2014 Winter Games. This may involve taking hormone-suppressing drugs with the potential for harmful side effects, or undergoing surgical treatments. While the IOC does not actively encourage athletes to undertake these surgeries, the pressures on athletes to compete are huge and have seen athletes undertake medical interventions to “normalise” their otherwise healthy bodies in the past.

Also let’s be real – even if athletes choose not to bring down their natural testosterone levels, those that “look masculine” or where it is publicly known that they have high T, will continue to be subject to media speculation, identity questioning and assumptions about their bodies. The way we currently frame and discuss this issue continues to reinforce ideas of what a woman should look like.

Ultimately, I think we have to seriously reflect on our assumptions about dividing sports by sex, and more carefully consider the way we treat those who can’t easily be categorised in this way. Even if we do definitively find that naturally occurring testosterone does affect athletic performance, I think we’re creating a problem where none exists. We seem obsessed with protecting some idealised notion of a “level playing field”, but this simply doesn’t exist and nor should it. It’s the Olympics! Olympians are naturally outliers – that’s how they got to this level in the first place and why we like to watch them compete! So many factors operate to give athletes a competitive edge over others, and I’ve already mentioned a number of biological ones. But there are also a host of other non-biological factors that come into play, like how much money an athlete has, their coaching and training facilities and access to other resources. Yet we don’t try and equalise these other factors. While it makes sense on many levels to divide sport by sex as opposed to these other attributes or circumstances, even leading sporting bodies have not been able to find any one explanation as to why some people perform better than others. Instead, we’re stuck on this idea that we have to push people into a division that we’ve created, and when they don’t properly fit, we need to change their bodies to fit.

* Trans* usually refers to transgender however I have used the abbreviation to acknowledge the diversity of identities that exist in this space.

* Many barriers also exist for people who are trans* in sport due to our division of men and women. In this post though I’m only looking at intersex issues.


For more info on Chand’s case and the scientific evidence on testosterone, check out the judgment and current IOC response.

Let’s start with the basics

I’ve decided to start a blog! How exciting! I’m making this space to engage in deeper discussions about intersex issues. For my first post, I’ve decided to share something I wrote about two months ago now on some of the main issues that intersex people face. In this piece I give a bit of an overview of what it means to be intersex and what it means to live as an intersex person. It’s a slightly edited version from the original, but the main points are still there!

 


girl boy

Hi friends! I’m not a big sharer but today I’m going to share something super important with all of you. It’s really long (there’s a lot to say) and it gets a bit sad and heavy towards the end unfortunately – but that’s just how it is and hopefully with greater awareness and understanding maybe one day things won’t be so bad!

So first up – I’m intersex! Most of you don’t know this about me because it’s really not something that just happens to come up. I identify as female or intersex female and use she/her pronouns, but they/their is okay too (although note that intersex people identify in a number of different ways). I’ve decided to talk about this now because no one else does and that really troubles me. While LGB issues are more commonly discussed in the media, and now there is slowly greater awareness regarding transgender issues, intersex issues are largely left behind. The “I” in LGBTIQ+ is largely misunderstood, often thought to be similar to the T, and often accidentally dropped out altogether.

gender

But intersex issues are important and it’s important that more people understand what it means. Also most of your assumptions about intersex people are probably wrong so let me quickly run off a few facts that your sex ed teacher probably just forgot to mention:

  • As much as everyone likes to believe, there are not just men and women in this world. Sex exists on a continuum and it can’t be determined just based on what you physically have or don’t have, your hormones or even your chromosomes. Aside from the fact that some people have XXY, XYY, XXX or just X chromosomes, some intersex conditions include XX presenting mostly as male (eg. Congenital Adrenal Hyperplasia) or XY presenting mostly as female (eg. Androgen Insensitivity Syndrome). So really a combination of all these factors determine your sex.
  • Being intersex means you’re not born with the stereotypical anatomy of a ‘man’ or a ‘woman’. Unlike the other letters in the LGTBIQ+ alphabet, being intersex is not about identifying as something psychologically; it’s about how you were physically born.
  • There is no one type of body that encompasses being intersex. There are over 40 different conditions which fall under this term. What’s interesting is that it’s also surprisingly common, but you wouldn’t know, because no one talks about it. Really conservative estimates suggest that 1 in 2000 people have a true intersex condition. However, other studies have found that as many as 1 in 150 people are intersex. Organisation Intersex International (Australia) even recommends the finding that 1.7% of all births will have an intersex variation, although many people may never realise that they are intersex, or will only find out later on in their lives.
  • Since there are so many variations, obviously not all issues that some intersex people face will be felt by other intersex people. For some their sex lives will be affected, for some it won’t be. Some can have children, some can’t. Some will be taking hormone replacements or other medications, some won’t. And some will need life-saving surgeries, but most won’t…and most are perfectly healthy.
  • If you’re intersex you can be straight, asexual, LGB, T or Q*+. As I’ve mentioned they’re entirely different issues and whether intersex should even be under this acronym is a debate for another day. One big difference you might like to keep in mind between people who are intersex and people who are transgender is that those who are transgender often have to fight to get surgeries they do want, while being intersex often means getting surgeries you don’t want (but more on that later).
  • Don’t ever use the term hermaphrodite unless someone tells you to! Many people who are intersex find it incredibly offensive and the true meaning of the word, being a ‘man’ and a ‘woman’ simultaneously, isn’t actually possible. Other terms have also been used to describe intersex people, like Disorders of Sex Development or Differences of Sex Development (DSD). This term is becoming a bit outdated now, but some people still use it to describe themselves. If you’re unsure, it’s best just to ask the person what terminology they prefer you to use.

So who cares? Even if intersex people exist we can just live and let live right?

No, you’re wrong. There I’ve said it.

There are so many reasons why non-intersex people should care about learning more about intersex people and the issues they face.

Firstly it’s always a good thing to learn more about the people around you, and realistically you would know and interact with a bunch of intersex people fairly regularly. More importantly though, a lack of understanding means that ideas and practices remain which continue to hurt and oppress intersex people and their bodies. The problem comes when people can’t comprehend that anyone exists who doesn’t fit perfectly into their idea of ‘man’ and ‘woman’ and so they try and make intersex people be someone they’re not. Also, these issues could directly affect you one day if you have an intersex child – the rigid ideas about what your kid should look like will affect you just as much as you feel guilt and shame.

There are many problems intersex people face, and I certainly won’t claim to speak for all intersex people. But as I see it, these are the main ones:

Firstly, there’s the daily grind. It can get quite tiring living within the strict sex binary that is imposed by society. This way of thinking divides everything, regardless of its relevance, into strict categories. It also gets tiring listening to the never-ending flow of opinions of what a ‘man’ should do and what a ‘woman’ should do, and how this often relates to their physical and mental capabilities. Then you also have all the other stuff that reminds you that the world thinks intersex people don’t or shouldn’t exist, from speeches (ladies and gentlemen, boys and girls) to sports teams, to filling in forms and deciding which bathroom you’re going to use. That’s not to mention the problems some intersex people may have with intimate relationships that makes the constant talk of sex and relationships a bit of a drag. As I’ve said though, not all these problems affect all intersex people.

Then there are the bigger problems. In good news, intersex people were recognised in anti-discrimination legislation for the first time in Australia (and globally!) in 2013. In practice, though, many intersex people still face discrimination in schools, employment, heath care and in elite sport (particularly intersex women who are often coerced into unnecessary and damaging surgeries to compete). Another issue is same-sex marriage and the problem with using that terminology to begin with. It’s better to fight for ‘marriage equality’, which is more inclusive of intersex people. Then there are also documentary and legal recognition issues. Fortunately in Australia, intersex people can choose “X” on their passport if they want to, although this will mean being denied entry into some countries (the United States, for example). Some but not all Australian states also allow changes to birth certificates to recognise intersex status (my understanding is that this includes the ACT, Victoria, NSW and WA although I’m happy to be corrected), but in some of these states this can only be done after surgery.

Then there’s an even bigger problem. I’m sorry, this is just a scale of bad to worse. Disturbingly, there’s a huge human rights issue regarding the practice of coerced intersex surgeries that is rarely spoken about. It occurs globally and often is simply a part of standard medical practice. This practice has been condemned by a report in 2013 by the UN Special Rapporteur on Torture, and in a report last year by the UN Human Rights Council. However only Malta has passed legislation making it unlawful. How good is Malta!

For some background, essentially medical practice used to subscribe to the belief that being intersex was a disorder or a disability that required medical intervention, even though there was often nothing ‘wrong’ with intersex people in that they weren’t unhealthy or needed the surgery for anything other than the cosmetic value of looking more like a ‘man’ or a ‘woman’. It was even thought that in very ambiguous cases, if you made the child a girl they would then identify as female or if you made them a boy they would identify as male (this was the theory in Australia from the 1950s to the 1990s). Often these surgeries were done when a child was newly born, either without parental knowledge or consent, or with misinformation. While thankfully that particular theory is outdated, these surgeries still happen today due to strong societal pressures and parental distress upon finding out the doctors can’t work out if they have a girl or a boy. Disaster!

Crude sex determination techniques - Intersex Society of North America
Crude sex determination techniques – Intersex Society of North America

So essentially, many intersex people are harmed by the desire of some people to change the bodies of others to fit in with their idea of ‘normal’. As a consequence of this, some intersex people are left with reduced or no ability to have sex and/or they are made infertile and/or they have to take hormone replacements for the rest of their lives. I’m not saying surgery is always bad, but it really shouldn’t be carried out on young children who know nothing about these issues and how they will one day identify. Currently, in Australia at least, parents are brought in early in the process (which is an improvement) but this still isn’t good enough – even with informed consent, the parent can’t possibly decide. I’m personally very thankful that my own condition was discovered when I was old enough to make my own informed choices about my own body. The risks are too great and parents can’t know what their kid is going to want or identify as one day. Recently there was a sad case in the US where a child in the care of the state was ‘turned into a girl’, although it was not medically necessary. This person has always identified as a boy and now he is infertile. By the way, his adoptive parents sued the state and lost last year.

I think it’s really important to keep all this in mind – not just so that we can help change this way of thinking so that people don’t feel the stigma and societal pressure to change the bodies of young children, but also really just to make you aware that there’s a lot that goes unspoken when it comes to intersex people. A number of us may have undergone surgeries that they may or may not have wanted, and some will have to live with that trauma for the rest of their lives. I don’t just mean physical trauma either, but also the trauma many intersex people face of confronting the idea that they need to be ‘fixed’ and the damage this does to their sense of self worth.

I did say this was going to get heavy, and there’s just one more thing I quickly want to raise – mental health. There are distressingly high rates of mental illness amongst intersex people. This is hardly surprising given the general lack of awareness and community support for intersex people, plus the overwhelming silence, stigma and lack of a sense of belonging. While statistics are sparse (given the lack of studies and data), a 2015 survey of 272 Australian respondents reported that “60% of the participants had thought about suicide, and 19% had attempted it, on the basis of issues related to having a congenital sex variation.” Can we all just take a moment to stop and appreciate how horrifying this statistic is? It matches similar statistics regarding people who are transgender and points to a massive problem in our society that we can’t accommodate differences in the people around us.

If you take anything away from this, please just keep in mind that there is no strict sex binary, a lot of intersex people (myself included!) are really happy with their bodies and the big problem is mostly the silence, the stigma and the societal pressures to conform which often leads to incredibly damaging results. Also if you have an intersex kid one day, just be chill and work it out a step at a time – they’re going to be fine!