Hanne Gaby Odiele attends the 2015 CFDA Fashion Awards at Alice Tully Hall at Lincoln Center on June 1, 2015, in New York. (Photo: Larry Busacca, Getty Images)
California on Tuesday became the first state in the nation to condemn "unnecessary" surgeries on intersex children.
The resolution, which calls the practice a human rights violation, is a landmark moment for the intersex community, advocates say.
"It means for the very first time a U.S. legislative body has affirmatively recognized that intersex children deserve dignity and the right to make decisions about their own bodies – just like everyone else," Kimberly Zieselman, executive director of interACT Advocates for Intersex Youth, told USA TODAY.
Which is to say the State of California is now making diagnoses and therapeutic norms.
This is a fascinating problem and, despite its complexity and the obvious close-mindedness and prejudice in this law and its presentation, Zieselman should be listened to.
First, Zieselman. She is a woman with what was called "testicular feminization syndrome" but has a new and apparently more palatable name: "Androgen insensitivity syndrome." This fascinating complex is one in which the child is genetically male with normal male hormones but whose cells can not be stimulated by the male hormones. It is rare, 1 in 13,000 births. As the body's cells are insensitive to androgens, the child has abdominal sex organs but the germ cell producers are testis, and the other organs regress leaving the child with a rudimentary uterus and a short vagina. (Internal testis have a very high rate of malignant degeneration.) Mrs. Zieselman was diagnosed in her early teens when she was brought to a fertility specialist because she had not started to menstruate. She was diagnosed and her parents were advised to have her testis removed to prevent cancer development and she was started on female hormones. She is now opposed to such preemptive acts and feels the child should have more input to her care. Importantly, none of these children have any male hormone contribution to their development--a contribution that is still poorly understood but most of these kids who are "assigned" femininity are pretty comfortable with it. And the decision to do this was historically done because it was the direction--and the hormonal nature if not the histologic nature--of the child anyway and the creation of maleness in such a child was and is technically difficult.
So this condition, which is well adapted to, has become a cause. And, like so many of these causes, a number of problems have crept in. And it seems at its base is the complexity of identity. What is the nature of a fifteen year old girl who is genetically male but with absolutely no expression of it? Is she any different from the fifteen year old girl who believes she is Italian and finds on 23andMe that she actually is of Serbian ancestry? And how much of this investigation and excitement is to the benefit of others? Does the 15 year old girl really benefit by knowing her genetic complexity? With the uncertainties of this kind of diagnosis, is a 15-year old girl in a good position to make a decision about her phenotypic direction?
One interesting insight comes from the United Nations which gives statistics that the instance of Intersex--where the sexual appearance differs from the histological one--is 1.7%, as is frequently quoted, "a figure roughly equivalent to the number of redheads." Now the commonest cause of intersex is the adrenogenital syndrome, where steroids are not completed in their developmental pathway and continue to be stimulated which causes an inadvertent rise in male hormones. This affliction--the affliction the Russians left untreated in the Press sisters whose male hormone levels gave them an athletic advantage in women's track and field, where they passed the genetic test as female--has an incidence of 1 in 13,000 births. How is it possible that the U.N. incidence of all of these rare abnormalities is 1.7%? Simple. You increase the definition of "intersex" and make it more common, more everyday.
Such a change in perception certainly benefits somebody.
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