MANOUSH ZOMORODI, HOST:
It's the TED RADIO HOUR from NPR. I'm Manoush Zomorodi.
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ZOMORODI: On the show today, the biology of sex. And just a quick note, we're talking about our physiology, our physical bodies. So if you're a kid, it might be good to listen to this one with a grown-up. Some of the things we talk about could be a little confusing.
OK. Before we get into everything, can you just describe where you grew up? Because it was a pretty traditional and conservative kind of environment, right?
EMILY QUINN: Yeah. I grew up in Salt Lake City, Utah. I wasn't Mormon, but I grew up surrounded by the Mormon culture, I guess.
ZOMORODI: This is artist and activist Emily Quinn.
QUINN: In that culture, women are expected to get married, have kids. Like, it feels like you're groomed from a very early age for motherhood, and they equate motherhood to womanhood and vice versa. And I kind of grew up surrounded by this idea that if I wasn't able to do that, then I wasn't really worth much as a woman.
ZOMORODI: And so when you were still pretty young, you went to the doctor. And what did they tell you?
QUINN: Yeah. So we went to a gynecologist when I was 10. And if you've ever been to a gynecologist, you know it's not a fun experience. For a 10-year-old, it was very, very traumatic because that was right when the maturation program was happening at school and...
ZOMORODI: Is that like sex ed?
QUINN: Sort of, yeah. I mean, it's like fifth grade puberty training almost. Like, (laughter) the girls go in one room; the boys go in the other. Like, I remember we went into the - half of the auditorium and, like, watched a video about getting your period and all that stuff. And so my mom was just kind of, like, and remember, like, this isn't going to happen for you. So it was - I already knew at that point.
ZOMORODI: Can we talk about what the doctors told you? You were told that you had a disorder. Is that correct?
QUINN: Yes. Yeah. I was told I have a disorder of sex development. Pretty sure it was androgen insensitivity syndrome. That was all the language that they used. The term intersex I didn't hear for a long time.
ZOMORODI: Emily Quinn continues her story on the TED stage.
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QUINN: I have a vagina.
QUINN: Just thought you should know. That might not come as a surprise to some of you. I look like a woman. I'm dressed like one, I guess. The thing is, I also have balls. And it does take a lot of nerve to come up here and talk to you about my genitalia - just a little. But I'm not talking about bravery or courage. I mean, literally - I have balls, right here, right where a lot of you have ovaries. I'm not male or female. I'm intersex.
Most people assume that you're biologically either a man or a woman, but it's actually a lot more complex than that. There are so many ways somebody could be intersex. And in my case, it means I was born with XY chromosomes, which you probably know as male chromosomes. And I was born with a vagina and balls inside my body. I don't respond to testosterone. So during puberty, I grew breasts, but I never got acne or body hair, body oil. You can be jealous of that.
QUINN: But even though I don't actually have a uterus - I was born without one, so I don't menstruate. I can't have biological children. We put people in boxes based on their genitalia. Genitals don't actually tell you anything, yet we define ourselves by them. In this society, we love putting people into boxes and labeling each other. It kind of - it gives us a sense of belonging and teaches us kind of how to interact with one another. But there's one really big problem. Biological sex is not black or white; it's on a spectrum.
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ZOMORODI: These days, we talk a lot more about gender identity, like using the pronoun they instead of he or she. And there's a growing acceptance that people express their gender on a spectrum - feminine, masculine, nonbinary and more. But we have a lot to learn about the biology of sex, what we're assigned at birth, because despite what most of us were taught in health class, there's more to it than just female or male, XX or XY. And so on the show today, the science and spectrum of biological sex - how our DNA expresses itself in a variety of ways. It's more complicated than we often assume. And as Emily Quinn says, what you see on the outside can have little to do with what's happening on the inside.
To be clear, like, not only do you look like any other girl but, like, you're very feminine and, like, super pretty. Sorry. Hope that's not...
QUINN: Buy me dinner first.
ZOMORODI: But you are - you're like - you present as, like, an extremely feminine...
QUINN: It's true.
ZOMORODI: ...Woman. And so for - I think there's something about it being you explaining this to people that is particularly surprising because you're like, yes, but I have XY chromosome. And you're like...
ZOMORODI: ...I grew up thinking that was a man (laughter).
ZOMORODI: It's confusing.
QUINN: Yeah. No, it is.
ZOMORODI: It feels like we haven't learned how biology really works.
QUINN: Right. And that's the truth of it, is that there's - it's so much more complex. So when I talk about sex and biological sex, I specifically talk about seven different areas, and people will talk about this in all various ways. I talk about the seven areas being your chromosomes, your gonads, like testes or ovaries. Sometimes you can have a mixture of the two or you can just have one or neither. Then there are your internal organs - like your uterus or fallopian tubes or whatever - your external genitalia, your hormone production, your hormone response, and then your secondary sex characteristics, which is, like, breast development, wider hips, facial hair, body hair, et cetera, muscles, everything that we kind of categorize as male or female that are all secondary. So, like, my body started out as male, and then it, like, went down a different path, if that makes sense. But somebody's body could go down a different path at any one of those seven areas. And as a kid, because I grew up in Utah and I had to be a woman, like, I was so scared of anyone finding out that I was, quote, unquote, "secretly a boy." I mean, like you said, I definitely started dressing more girly and femininely. That was more from my own shame and need to fit in and not be discovered or let my secret out or whatever.
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QUINN: The sex and gender binary are both so ingrained in our society that we never stop to think about it until somebody comes along to make you question it. And if you're thinking that I'm the exception - an anomaly, an outlier - intersex people represent around 2% of the population. That's the same percentage as genetic redheads. We're not new or rare. We're just invisible. We've existed throughout every culture in history, yet we never talk about it.
In fact, a lot of people might not know that they're intersex. A friend of mine found out last year, in his 50s. The executive director of interACT, which is the leading organization for intersex human rights here in the U.S., she found out she was intersex at age 41. Her doctors found out when she was 15, but they didn't tell her. They lied and said that she had cancer because that seemed like an easier option than finding out she wasn't fully a woman.
This kind of thing happens a lot, where intersex people are lied to or kept in the dark about our bodies. It's rare to meet an intersex person that hasn't been operated on. And oftentimes, these surgeries are done to improve intersex kids' lives, but they usually end up doing the opposite, causing more harm, both physical and emotional. I'm not saying that doctors are bad. It's just that we live in a society that causes some doctors to fix those of us who don't fit their definition of normal. We're not problems that need to be fixed. We just live in a society that needs to be enlightened.
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ZOMORODI: Emily, if you could go back in time, what do you wish had been different about the way you were treated as an intersex person?
QUINN: What I really wanted was somebody saying, hey, like, this is going to be OK. Like, it's not a big deal, and it's not, like, that life-changing because that's the thing - if I hadn't had all these societal experiences, it wouldn't be that big of a deal. Even with small things like learning at an early age - so most people are boys or girls, but some people are in between - and kind of learning that would have been life changing because it would have meant I belonged somewhere. And as a kid, I never really belonged anywhere because I didn't belong with the girls, and I didn't belong with the boys because that's all we knew. And so if I had somewhere that I fit in and that I belonged and I didn't just constantly feel like an impostor, that would have been huge.
ZOMORODI: You know, I was actually there when you gave your TED Talk. And I have to say, your tone right now is just so different. Like, you were so sassy and funny, and you were like, yeah, I'm ballsy. And, like, you know, you can't help but laugh because of what you're talking about. And there was this moment in the TED Talk - I remember it so vividly - your voice broke, and you looked so surprised. And you even said, I think, I didn't think I was going to get emotional. And I feel like - at that moment, I remember thinking, like, oh, there's a crack there. And I hear it in your voice now, and I wonder if that's what's happening, is you're exploring that crack. And that must - if that's the case, that sounds like a lot of work.
QUINN: You're making me cry.
ZOMORODI: Oh, I'm sorry.
QUINN: No, it's OK. Yeah, I think that's the issue, is that when you take humans out of the equation, especially in a medical capacity, it leaves a lot of trauma, unfortunately. It's been within the last month that I've started really trying to dive deeper into that trauma, and I didn't realize how much I held in my body. Yeah, it's a lot. But I also think, like you said, like, the fact that we can sit here and laugh about it, that's massive because for so long, I couldn't talk to anyone about it.
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QUINN: And I'm aware of how much - like, how awful that was and how much that hurt. And I don't feel that hurt anymore, which is really good. And I think that's part of what has come from being able to laugh and talk and be very open is - you know, I was able to go from not telling anyone to shouting it on the rooftops. And, you know, like, it was just so freeing.
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ZOMORODI: Emily Quinn - you can find her full talk at TED.com. On the show today, ideas on the biology of sex. I'm Manoush Zomorodi, and you're listening to the TED Radio Hour from NPR.
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