Narrative Inquiry in Bioethics

In my medical record, there is an enigmatic note. It was written as a consultation request from a pediatric endocrinologist to a plastic surgeon while I was hospitalized at age 13 (in the late 1960s) for mastectomy. The note reads:

You have seen this unfortunate teenager with the feminizing testis [older name for androgen insensitivity] syndrome on several occasions in the past in reference to the construction of a penis. Would appreciate your seeing him again to evaluate the problem. He is firmly fixed in the male gender role despite efforts on the part of his father to persuade him of the logic of a change.

The surgeon’s response (also in my notes) was:

The prospect of creating an acceptable penis in this patient seems to me very remote. There is nothing there except an enlarged clitoris. This could be mobilized and might project a few cm but cannot be made into a male organ of normal dimensions. The hair distribution and the perineum is also feminine which compounds the reconstruction problem.

Since the decision has been made to go along with the male gender I suppose that mobilization of the penis–clitoris is reasonable. Urethral reconstruction will be possible only much later. . . .

I saw this note for the first time at age 21 but didn’t think it was particularly significant until many years later. At the time I had other, much more pressing concerns, as I had reached the conclusion by then that I had been mis–assigned as a boy and that the only way for me to have a reasonable and happy life would be for me to change to living as a girl. It was not a surprise that my doctors had been completely on the wrong track about my “gender”. I was also not about to bring this up with the endocrinologist, a person who had terrified me as a child and whom I still found a bit intimidating.

I do remember the surgeon stopping by and examining me briefly without explaining who he was or why he was there. I had a somewhat longer, but equally uninformative (for me) visit from a child psychiatrist. The note requesting a consultation from the psychiatrist reads:

Would you see <boy name> while he is here recovering from his mastectomy? Since he began to show mammary growth 18 months ago his father has put him under considerable pressure to undergo another change in gender role. <Boy name> has resisted but he is quite depressed. We would appreciate any suggestions you may have.

I actually have no recollection at all of anything like pressure from my father to change to living as a girl. What I actually experienced was more like 180 degrees away from that—the expectation that I should try to be more masculine. As I remember, my father was bothered by my having breasts and was the one who initiated the physician contacts that led to mastectomy. (My mother had died when I was five, leaving him to rear me as a single parent.)

As my father recollected to me many years later, he had asked the pediatric endocrinologist to explain all of my treatment options and alternatives to me. I can only guess, but possibly the pediatric endocrinologist interpreted this as my father wanting me to change to living as a girl. As a young [End Page E1] adult, I got the impression that this particular doctor tended to mistake asking for information about possible treatments for requesting treatment. The idea of a patient gathering information and making informed decisions may not have figured prominently in his thinking. On the office visit when I was 21 and first mentioned to him that I might want to live as a girl, he told me that gender identity was “an unshakable conviction,” so perhaps his idea was that gender was just not something a person could make an ordinary decision about, weighing the pros and cons.

My father knew—but at age 13 I didn’t—that the original decision for me to grow up as a boy had been made in a somewhat haphazard way. I had entered...