In Amerika They Call Us Hermaphrodites
Doctors have come from distant cities
just to see me—stand over my bed
disbelieving what they’re seeing
they say I must be one of the wonders
of God’s own creation
(from the song “Wonder,” on her album Tiger Lily)
There was never any reason to suspect anything strange. I appeared female when I was born in 1972, and I was assigned and raised as a girl.
When I was twelve, I started to notice that my clitoris (that wonderful location of pleasure for which I had no name but to which I had grown quite attached) had grown more prominent. At least, that’s how I perceived it. I can’t remember whether I thought anything about it; I just remember that I began to notice it. I’m sure that it was at least three months after I had taken note that my mother caught a glimpse of me as I bathed one day after returning from the dance studio. She tried very hard not to let on how alarmed she was, but of course a twelve-year-old girlchild just senses these things. When the pediatrician examined me the next day she was also obviously alarmed. She referred me to a female pediatric endocrinologist at the University of Illinois Medical School.
Exactly one month later, I was admitted to Children’s Memorial Hospital in Chicago for surgery. They told me a little bit about the part where they were going to “remove my ovaries” because they suspected cancer or something like that. They didn’t mention the part where they were going to slice off my clitoris. All of it. I guess the doctors assumed I was as horrified by my outsized clit as they were, and there was no need to discuss it with me. After a week’s recovery in the hospital, we all went home and barely ever spoke of it again.
As for the assertion that doctors now consistently provide sophisticated counseling for the intersexed child and family, my experience does not reflect that good intention. First of all, my doctors made a traumatizing hospitalization even more traumatizing by putting me on show for parades of earnest young residents with “you’re-a-freak-but-we’recompassionate” grins on their faces. This, all without nurses or my parents anywhere around. Second, I know now from my parents that the pediatric endocrinologists repeatedly advised them that I did not need to know the truth. They told my parents some horror story about a girl like me who had peeked at her file once while the doctor was out of the room and then killed herself. My mother asked the doctors specifically if they thought I would benefit from any type of counseling. They discouraged her from pursuing it. That’s what passed for emotional support among the Children’s Memorial Hospital intersex specialist team in Chicago in 1985.
I’m now twenty-four. I’ve spent the last ten years in a haze of disordered eating and occasional depression. My struggle with bulimia has been an all-consuming although mostly secret part of my life, and I now believe it represents my attempts to express the fear, shame, rage, and intense body-hatred that I have felt as a result of the—until now—unspeakable assault that I experienced under the guise of medical treatment.
I do have some clitoral sensation. I sometimes masturbate and I do have an experience which I call orgasm—some faint muscular contractions. But response is unreliable, and nothing like the tremendous sensitivity and wonderful juicy orgasms I had before the clitoral surgery. I would say that the clitoral recession and vaginoplasty decreased my responsiveness by a factor of five or ten.
Four months ago, I finally got some of my medical records from Children’s Memorial Hospital in Chicago. They are shocking. The surgeon who removed my clitoris summarized the outcome as “tolerated well.”
I hadn’t made much sense of these records until a recent visit to my gynecologist at Barnes Hospital in St. Louis. I was referred to her three years ago by the University of Illinois pediatric endocrinologist to determine whether I would “need” the vaginoplasty. This was all news to me, as I had never been informed that I would ever need more surgery. As it turned out, my gynecologist concluded that I had a sufficient vagina and she recommended only pressure dilation.
Anyway, just about a month ago I visited the gynecologist for my routine annual physical—she’s the only doctor I ever see. This time, when she asked what kinds of questions I had, I pulled out my records and asked her to review them with me. She actually spent over an hour with me explaining some of my records to me. One phrase that stuck in my head was “Androgen Insensitivity Syndrome.” I left that day still in a fog, but a little more confident that at least someone had taken my questions seriously.
Then, just under a week ago, I received a package by mail from a friend in whom I had confided some very sketchy details about my surgery. Natalie Angier’s article about ISNA (Intersexual Healing, New York Times Week in Review Section, Sunday, February 4, 1996—Ed.) and the Winter 95-96 issue of ISNA’s newsletter Hermaphrodites with Attitude had crossed her desk, and she realized that this might be related to my situation. In fact, she was absolutely right. I couldn’t believe it as I sat there reading stories that I could have written.
After reading these articles and others that I located at the ISNA website, I now suspect that I have Partial Androgen Insensitivity Syndrome. The medical team lied to me about removing my ovaries; they actually removed my testes. I know from my records that I have a 46 XY karyotype.
I am horrified by what has been done to me and by the conspiracy of silence and lies. I am filled with grief and rage, but also relief finally to believe that maybe I am not the only one. My doctor told me more than once that I wasn’t the only one, but I never got to meet any of them. I’m full of anticipation, fear, and craziness at the thought that, through ISNA, I may finally be able to speak with and meet others who share these experiences.
See also Angela’s Letter to my physicians.
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