COLUMN – There are all kinds of physical conditions that prevent a person’s anatomy, endocrine system and chromosomes from aligning. There are people who are genetically XXY; people who are anatomically male, but do not respond to testosterone, causing their bodies to develop female; people with the XX chromosome who produce an abundance of testosterone; people with a mixed XX/XX chromosome; people with XO chromosomes; people with ambivalent sex organs.
All these people are called ‘intersex’, although the differences between them can be large. In one case you have no physical problems, in the other you have to support your body with hormones, and sometimes operations are needed, for example to urinate properly. And in people with androgen insensitivity syndrome – genetically male, anatomically female, because androgen insensitive – the testes, which do not descend, are usually removed because of an increased risk of testicular cancer.
What amazes me immensely is how little known this diverse group of people is. By conservative calculations, the eight most well-known intersex conditions together comprise about 1.7 percent of all people; bolder estimates run as high as 4 percent. But let’s stick to that cautious 1.7 percent.
You may not find that much. But compare it with other chromosomal or genetic phenomena that are known as abnormalities, and consider how much attention is paid to them: per million children there are 4 conjoined twins, 1000 with Down, 1400 with a cleft lip and 17 thousand are, in any form or degree, intersex.
Everyone knows what conjoined twins are, although they are extremely rare. Everyone knows someone with a cleft lip, or with Down. But intersex people? We usually don’t even know about their existence. You rarely hear from them, you barely read about them, pregnancy books and courses never mention them. The realization that human bodies can be more ambivalent than boy or girl, man or woman, seems completely non-existent. It really seems like a taboo: something that the culture keeps silent at all costs.
Children who are intersex are often given hormones early on and undergo surgery to “correct” their bodies. Often unbeknownst to them: de Volkskrant had last week a conversation with a woman who wasn’t told she was intersex until she was 19, who was secretly on hormones (they were “vitamin pills”) all along, and who, unknowingly, also had her clitoris removed during the testicle removal at 25 taken away.
Anyone who values the right to physical integrity should scratch their heads at such stories. Many adults whose bodies have been corrected as a child without their knowledge, let alone their consent, suffer from this for the rest of their lives. They are mangled by our taboo.
(Incidentally, in March 1997, in the Annie Romein-Verschoor lecture, I paid extensive attention to the broad field between man and woman, both in terms of biology and gender. That lecture, entitled ‘M/F: strike out what does not apply‘, is on my website and was published in 1998 in my essay collection of the same namel.)
This column by Karin Spainko previously appeared in Het Parool.
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