“Normalizing” Intersex Didn’t Feel Normal or Honest to Me.

I am an intersex woman with Complete Androgen Insensitivity Syndrome (CAIS). My 57–year history with this has its own trajectory—mostly driven by medical events, and how I and my parents reacted. Most of my treatment by physicians has not been positive. It didn’t make me “normal” at all. I was born normal and didn’t require medical interventions. And by the way, I’ve never been confused about who or what I am.

Truthful disclosure didn’t come to me about my biology and what was done to me as an infant until I was 33, when I forced the issue by removing my medical records from my endocrinologist’s office. I learned that there was never full disclosure to my parents either, and therefore there was no informed consent for the “corrective” surgeries performed on me as an infant. My parents were only told that their little girl would get cancer and would not have a normal development as a girl unless her “deformed ovaries” were removed, and that they should never discuss these problems with me. Thus, after having presented with an inguinal hernia and having exploratory surgery at age 16 months, my intra–abdominal testes were removed in a second surgery two months later. I was pronounced a “male pseudohermaphrodite,” a diagnosis that was shared neither with my parents nor with me.

Years later, I discovered an article my surgeon published in 1960 in the Delaware Medical Journal about me and another intersex person he operated on (whom he labeled a “true hermaphrodite”). The article gives a very detailed pathology report of my gonads, but only two sentences regarding my welfare and the rationale for performing those surgeries. Dr. J. F. Kustrup wrote in this article, “These [two cases] emphasize the need for early diagnosis and treatment in order to avoid the possibility of malignant change and to permit these individuals to follow a normal psychosexual pattern.” And: “Hermaphroditism and pseudohermaphroditism are conditions in which early diagnosis and treatment are essential to avoid malignant degeneration and to allow the child some chance toward normal pyschic [sic] development.” I was grateful to find this article because it revealed the unfounded assumptions underpinning the recommendations for treatment, much of which continues today. Worse even than the sort of social prejudice that shapes treatment is the absence of evidence for what doctors treat as “necessary” interventions. For my syndrome, CAIS, there never was—and still is not—data to support the cancer scare, or the opinion that I’d be confused and not have a normal life.

From about the age of four, I can remember being different and being stonewalled by my doctor and prevented by my parents from talking about it. The feelings and fears I tried to express were shushed away, and I could tell that my questions were upsetting everyone. Even if I had wanted to be complicit with their lame diversions and nonsensical explanations, the massive abdominal scars were there as a daily reminder and hinted at a very different story.

The Road to Hell is Paved with Good Intentions

Growing up, I was treated like a fascinoma and a lab rat at a major teaching hospital on the East Coast. All I learned from those doctors as a young kid was what it feels like to be ogled, photographed and probed by a roomful of white–coated male doctors. Dissociation made itself my friend, and helped me to cope through the annual genital and anal exams and probing. I thought I was a freak and I felt completely powerless to protect myself from them and their “care”.

At my annual appointment at age 12, with my mom present, three doctors told me I was infertile. Learning that I couldn’t have kids really saddened and shocked me, but there was no opportunity to talk about my feelings—either that day, or any time afterward. I was told to stop crying. I remember them telling me that there was no one else like me and that this was a random genetic anomaly, thereby reinforcing the freakishness...