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.
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.
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?