"You're So LUCKY!"

My form of intersex is AIS (androgen insensitivity), more specifically CAIS (complete androgen insensitivity). Like other CAIS and PAIS (partial androgen insensitivity) individuals, I never developed a uterus or other “female” internal reproductive organs. Upon learning that I subsequently can’t menstruate or give birth, a lot of peoples’ reactions are, “Oh man, you are SO *lucky*!”

We need to talk about this.

First and foremost, let’s put it out there – I agree that for me personally, for this Claudia, that statement is true in part. I’ve rarely expressed interest in hanging around little kids and playing games with them, and I never wanted to create a family with a partner that included kids. I was not exceptionally pain-tolerant when I was younger and was happy not to go through every month what looked like a very uncomfortable experience at best. That you’re-so-LUCKY! sentiment, in this context, makes me smile and laugh and agree with my conversation partners.

But that’s not where these conversations (should) end.

It’s important to recognize some stuff. First off, there are lots of intersex individuals out there that LOVE kids and have wanted to raise children of their own for a long time, that may be very upset by the fact that they cannot have children. There are intersex individuals that want to have had that experience – to know what it’s like to menstruate, to be able to do that. (At various points in my life, I’ve been a part of that latter category, and even am sometimes now though very infrequently.) What was entirely appropriate for me – “You totally dodged a bullet with this awful period/childbearing thing, amirite?” – may be the exact opposite of how some intersex individuals may feel about these issues.

This issue is further complicated by the fact that some intersex individuals that WERE biologically able to have children may not be after having undergone medical procedures that essentially sterilize them. Sometimes, will suggest internal sex organs be removed because they could become cancerous. This is true in some cases. I had my own partially-formed testes removed a few months after birth because, being only partially formed, they were not functional. Non-functional tissue can’t do more than sit there in your body, being unused – it’s this tissue whose cells may ultimately start dividing uncontrollably = this tissue’s now cancerous. This non-functional tissue should be removed so that individuals don’t incur cancer. However, there have been accounts by intersex individuals and their parents that doctors said they needed to remove internal sex organs because they might become cancerous when, in fact, these internal sex organs were fully functional and subsequently did not constitute any risk of cancer whatsoever. These doctors likely did not make the distinction between non-functional, potentially cancerous tissue and functional tissue that shouldn’t pose threat of cancer, and only later did intersex individuals and/or their parents realize that their (/loved ones’) fertile bodies were sterilized. While I concede that not all clinicians – or perhaps even a majority of clinicians – perceive these sterilization surgeries in this way, they do not make sense except in the context of eugenics. At best, these surgeries are extremely misguided and do not allow intersex individuals consent. Even if one was to accept that the parents of intersex children should be allowed to make consent by proxy for their children when they’re too young to do so themselves (something I strongly oppose), these parents couldn’t truly give consent in these cases anyway, since they were given misinformed, perhaps deliberately. In short, stating how lucky someone is not to have to go through the pain of childbearing, or having to worry about their hypothetical kids running around causing havoc, may seem like a cruel statement to someone who not only wanted to do that, but was actually ABLE to do that until these abilities were robbed of them when it was not their choice.

Perhaps the most important thing to discuss here is that absence of pain due to menstruation or childbirth does not mean absence of pain, in general. Many, if not most, intersex individuals are shuttled through the medical system, are treated like they are sick, are treated like their bodies are fucked up and freakish and vaguely shameful, are subjected to a variety of appointments and testing and procedures that cause pain at the physical, psychological, and emotional levels. When people have said to me, “You’re so lucky you miss out on all that PAIN – auuuugh, gawd!” I am reminded of these things that I have experienced, that I did not ask for, and that I didn’t know that I could say, “NO!” to. I feel angry, because by saying, “You have no pain to suffer through!” it erases my experiences, many of which were in fact, painful, albeit in different ways than menstrual or childbirth pain. It makes it feel like I have gotten away with something by virtue of my conversation partners’ bodies’ abilities to do these things when my body does not, when I also know that by virtue of having my body, I have gone through pain that my conversation partners are likely unaware of. Just because some intersex peoples’ bodies do not menstruate or are reproductive or give birth doesn’t mean that our bodies have not suffered pain.

Lastly, I have come to find statements like these increasingly more interesting as I’ve gotten older. “You’re so lucky you can’t do this” = there’s an assumption that my body is “supposed” to be able to menstruate, is “supposed” to be able to be reproductive and specifically bear children in my case. It is assumed that because I outwardly look female, that I must be able to do actions X, Y, and Z. The fact that I can’t do them means that I’ve gotten away with something. I’m “lucky.” But the truth of the matter is that I’m not lucky. My body was never supposed to be able to do this in the first place. My body was ALWAYS that of an AIS individual, a CAIS individual. As a fetus, I wasn’t going to turn into a girl. I wasn’t going to turn into a boy. I was going to turn into me, the whole time. To me, statements with the how-are-you-lucky-enough-to-have-gotten-away-with-this sentiment are akin to me being told by a bird that I’m so lucky I don’t have to fly around for long periods of time during migrations, or being told by a trout I’m so lucky I don’t have to try swimming upstream because it’s difficult. What the hell are you critters talking about?! I’m not a bird and never was, and never will be. I’m not a trout and never was, and never will be. I didn’t get away with not being able to do those things – I was never supposed to be able to do them in the first place, because I’m ME. Saying that I’m lucky not to do something it’s assumed my body “should be” able to do erases the realness of my intersex body. My body is only supposed to do what it was always supposed to do, and that includes not menstruating or being reproductive or bearing children. MY BODY IS ALREADY DOING WHAT IT WAS SUPPOSED TO DO ALL ALONG. The problem is in the perception that intersex bodies are supposed to be like or do things that male- and female-defined bodies do. But not all male bodies and not all female bodies do the same things anyway. Why would we assume that intersex bodies will all work the same way as all male and/or female bodies? Would we assume that all intersex bodies, with our many variations, work the same way as all other intersex bodies, too? These perceptions need to change.

So if you are having a conversation with intersex individuals and what some intersex bodies can and cannot do, it is worth considering whether or not to frame things in the context of luck and beating the biological system. Because it’s not like that for many of us.