“Intersex” is a general term used for a variety of conditions in which a person is born with a reproductive or sexual anatomy that doesn’t seem to fit the typical definitions of female or male. For example, a person might be born appearing to be female on the outside, but having mostly male-typical anatomy on the inside. Or a person may be born with genitals that seem to be in-between the usual male and female types—for example, a girl may be born with a noticeably large clitoris, or lacking a vaginal opening, or a boy may be born with a notably small penis, or with a scrotum that is divided so that it has formed more like labia. Or a person may be born with mosaic genetics, so that some of her cells have XX chromosomes and some of them have XY.
Though we speak of intersex as an inborn condition, intersex anatomy doesn’t always show up at birth. Sometimes a person isn’t found to have intersex anatomy until she or he reaches the age of puberty, or finds himself an infertile adult, or dies of old age and is autopsied. Some people live and die with intersex anatomy without anyone (including themselves) ever knowing.
Which variations of sexual anatomy count as intersex? In practice, different people have different answers to that question. That’s not surprising, because intersex isn’t a discreet or natural category.
What does this mean? Intersex is a socially constructed category that reflects real biological variation. To better explain this, we can liken the sex spectrum to the color spectrum. There’s no question that in nature there are different wavelengths that translate into colors most of us see as red, blue, orange, yellow. But the decision to distinguish, say, between orange and red-orange is made only when we need it—like when we’re asking for a particular paint color. Sometimes social necessity leads us to make color distinctions that otherwise would seem incorrect or irrational, as, for instance, when we call certain people “black” or “white” when they’re not especially black or white as we would otherwise use the terms.
In the same way, nature presents us with sex anatomy spectrums. Breasts, penises, clitorises, scrotums, labia, gonads—all of these vary in size and shape and morphology. So-called “sex” chromosomes can vary quite a bit, too. But in human cultures, sex categories get simplified into male, female, and sometimes intersex, in order to simplify social interactions, express what we know and feel, and maintain order.
So nature doesn’t decide where the category of “male” ends and the category of “intersex” begins, or where the category of “intersex” ends and the category of “female” begins. Humans decide. Humans (today, typically doctors) decide how small a penis has to be, or how unusual a combination of parts has to be, before it counts as intersex. Humans decide whether a person with XXY chromosomes or XY chromosomes and androgen insensitivity will count as intersex.
In our work, we find that doctors’ opinions about what should count as “intersex” vary substantially. Some think you have to have “ambiguous genitalia” to count as intersex, even if your inside is mostly of one sex and your outside is mostly of another. Some think your brain has to be exposed to an unusual mix of hormones prenatally to count as intersex—so that even if you’re born with atypical genitalia, you’re not intersex unless your brain experienced atypical development. And some think you have to have both ovarian and testicular tissue to count as intersex.
Rather than trying to play a semantic game that never ends, we at ISNA take a pragmatic approach to the question of who counts as intersex. We work to build a world free of shame, secrecy, and unwanted genital surgeries for anyone born with what someone believes to be non-standard sexual anatomy.