Time for a Change
I was born in 1961 with a problem of sex differentiation. At the age of three months I was diagnosed as a male pseudo-hermaphrodite at Cincinnati Children’s Hospital when they performed an exploratory laparotomy [abdominal surgery]. They found a rudimentary uterus, fallopian tubes, segments of a vas deferens, and gonads. They did a second laparotomy and biopsy at age seven months where they removed what they characterized as “three under-developed testes.” The reason for this removal was to prevent a possible malignancy of these organs or perhaps a masculinizing puberty.
In 1966 I underwent plastic surgery at Buffalo Children’s Hospital to reduce my enlarged clitoris and open the labial skin. At this time it was discovered that I did not have a vaginal opening, but rather a urethral-sinus cavity [a partially developed vagina that opens into the urethra].
At age ten or eleven I began to receive counseling sessions at Buffalo Children’s two or three times a year. In these sessions, I would sit with a psychologist for about an hour and she would talk to me in very general terms about my being different. She told me that I was female, but my ovaries and uterus had been “under-developed,” and that I would need to take pills prescribed by doctors if I wanted to have puberty like other girls. I remember sex education classes that start in the fifth grade—you know, the ones where they separate the boys and girls and talk to you about physical changes that will happen to you, but nothing about sex itself. I knew then that what I was hearing didn’t apply to me, but I couldn’t talk about my difference with anyone—not the teachers, not my parents.
I remember at this time hearing about hermaphrodites in Greek mythology, and I knew that it had something to do with my unnamed condition and my being different. I remembered my amputated penis, and wondered why they had removed it. I knew that my sisters didn’t have to go through this surgery when they were young, so it had something to do with that. I didn’t have anyone to talk to about the information I was acquiring, so I just locked it away deep in my mind.
Around age fifteen they told me that I would need surgery if I ever wanted to have sexual relations with a man. We discussed this further, but I was very uncomfortable with the idea of further surgical procedures. Having been in and out of the hospital many times as a child, I had the usual fear of needles, doctors, and surgery. In any case, I don’t suppose that it is very important now since I am lesbianidentified. If I were even remotely interested in sex with men I might feel differently.
At age seventeen they told me to take birth control pills. This was to keep the hormones balanced in my system. I was told that because of my—still unnamed— “condition,” I was similar to post-menopausal women, and that I might get weak bones if I didn’t take the pills. But having suffered the turmoil of a hormonally-induced puberty, and then taking these pills, I felt like I was on an emotional roller coaster: up one day and suicidally depressed the next. The psychologists never discussed this with me, but after a few months I just stopped taking the pills and I haven’t taken them ever since. A little risk of weakened bones just doesn’t seem worth the pain of being back on that emotional roller coaster.*
I learned about ISNA, purely by chance, at a talk in 1995 by Dr. Anne Fausto-Sterling. Until that time I had never spoken with anyone outside of the medical profession about my intersexuality. In the past I had dealt with my intersexuality by not dealing with it, by simply squashing all my feelings. I kept things to myself. Questions. Problems. Shame.
My mother and I have only now, over the past year, been able to talk about this openly. I found out from her that after I was delivered they put her out with a sedative and whisked me off to the nursery, where I was given oxygen for the first twenty four hours after birth because I was cyanotic. They also began the standard battery of blood tests, including buccal smears, to determine my genetic sex. These tests came back indicating my genetic sex as being male. When my mother recovered from the sedation, she was not told of my condition. It wasn’t until two days after my delivery that she was told about my condition. She was only nineteen, living five hundred miles away from her family and friends, had just gone through childbirth, and was still doped up from the sedative when they broke the “news” about her child’s ambiguous genitals. My father was at work and his parents were not there at hospital to be with her either. Their explanation used a lot of medical jargon, and then after confusing her with all of this they asked her if she wanted to see me or not. I guess the doctors believe that a mother who has just given birth would not want to see her child. My mother recalls that when they finally allowed her to see me for the first time, two days after I was born, she felt like she wanted to kidnap me, take me away from the hospital right then and there.
Later that day, when my father was there, they described again my condition and their proposed treatment. By this time the doctors had already decided that I should be assigned female. When they explained this to my parents, they did so in a way that suggested that if I didn’t have the recommended surgeries I might die. My parents were given little time to think about what was said, they were pressured into allowing the doctors to go ahead quickly with further examinations and with surgery.
Because of the way I and my family were treated by doctors who are considered to be experts, I am working with ISNA to change the current medical treatment of intersexed conditions. Our stories are slowly becoming known to the general public. We are all around you, but—until now—we have been invisible because we have been silent. It’s time for that to change.
Actually, the risk of osteoporosis for an intersexual whose gonads have been removed by surgeons and who does not take replacement hormones is far more severe than for a post-menopausal woman, because s/he will be without hormones for many more years. Severe osteoporosis is painful and debilitating in the extreme, and should not be lightly dismissed as “weakened bones.” —Ed.
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