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!

 


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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.

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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!

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