A Mother's and Daughter's Experience Rejecting Clitoral Surgery
The following are excerpts from a 1998 interview conducted by Alice Dreger and Cheryl Chase with an adult woman, identified here as “Sue,” and her mother, identified here as “Margaret.” Sue was born with a large clitoris, and against at least one physician’s recommendation, Margaret decided not to have a surgeon reduce the size of Sue’s clitoris.
Margaret came to this decision by following her practice of “examining the doctors.” She decided that the doctor who was bothered by Sue’s large clitoris was, like Freud, too phallic-centric. Having interviewed her obstetrician who saw many women with large clitorises and having been assured by the obstetrician that those women did well, Margaret decided to leave decisions about clitoral surgeries to Sue herself. Sue never chose to reduce her clitoral size, and in fact in a follow-up conversation, Sue asked Alice Dreger to mention that Sue’s romantic partners have found her large clitoris an asset, “a bonus, a wonderful enhancement to our sexual activity.”
Margaret: We had a very nice pediatrician – I fell into what my friends had, and didn’t have too much experience about interviewing pediatricians. He came to the house which was unusual. That was in 1959. . .
Cheryl: And Sue is your second child?
Margaret: The first one was a stillborn. Sue was the first living child . . . Sue was . . . young [when the issue of her clitoris size was raised], but I heard her [in my mind] saying already, “Think twice, Mom, before you do something to me.” So that’s number one. And, so, one day, the pediatrician said, looking Sue over, said, “This is a phallus and has to be removed.”
Cheryl: So that wasn’t when she was born? That was later?
Margaret: That was later. . . . My mother had been a nurse – not an R.N. – a volunteer Red Cross nurse in World War I . . . . And, so, she believed more in T.L.C. [tender loving care] … So, I’m trying to think, you know – how I got to my thinking of not following every doctor. And then of course “Dr. Spock” was my bible – Spock children, spoiled brats [laughs]. I think they survived Dr. Spock pretty well! . . . [to her daughter] You’ll have to read Dr. Spock sometime to find out how you were raised. Anyway, pretty common sense. And my whole tendency has been that way. . . . So when I heard that [that the “phallus had to come off”], I figured, well, let’s see, let’s evaluate the doctor. And it turns out that he was in therapy. And I think he was in, not just psychotherapy, but analysis. So having had an uncle who was trained by Freud, I had a little bit of background on Freud, and figured, well, you know, that’s his tendency [to focus on the phallus], and let’s not jump into this. And so I started doing some research as to where can I get more information, who knows more about this, and eventually got to Maryland – Johns Hopkins. [She wrote to Johns Hopkins University and John Money, and] I don’t know if I got the letter from him, or from an associate, saying that apparently that’s where the research had been done. And the crucial statement to me, that it said, was that “if it’s removed there is a risk of losing sensation.” So I thought, “Well, let’s be extra cautious and not jump into this.” [Speaking to her daughter:] You read the letter.
Sue: The letter was from an associate who was responding for the original doctor you wrote to, and it just said, “We don’t make a decision. We can’t give advice just based on – you know – your statement. We would need to see the patient for our own observation.” You know, just a very form letter, not much [information]. I don’t even remember the phrase. [Speaking to her mother.] You said you remember it saying that it could cause loss of sensation. . . . I just remember it was so general, and so vague. It didn’t specifically recommend surgery, it didn’t recommend anything. It just said, “Bring her in for evaluation, we’ll be glad to take a look, and decide from there what advice to give you.” And you remember a phrase that said . . .
Margaret: That it can cause loss of sensation. . . . I remember that because it influenced me a lot. . . . So. I decided, well, the person to ask is my obstetrician who sees women at a later stage – who would see [whether] will this [a big clitoris] cause a problem. And, he said he’s seen women with all size clitorises and that he hasn’t – wasn’t aware [of women with big clitorises experiencing problems]. . . . Now, I don’t know, his Catholicism influenced his decision-making very much. He was even reluctant when I needed the [birth control] pill for regulatory purposes, and he very reluctantly gave it to me and said it wasn’t for birth control. But he said he hadn’t [seen problems in women with big clitorises] – as long as she survived the puberty – until she got hair, pubic hair, and that kids wouldn’t make fun of her, that would be the main thing, so as long as we didn’t make an issue of it, that she was different, then no problem. So, I took it . . . and, I think, at some point, said, well, she was already two years old, I think, and so, it would have been traumatic at that stage, and so, she could always have it done at a later time, if, through her choice – and, so my decision was not to do anything. So. But, you know, the wise thing was to go to somebody [like a gynecologist] who sees women at a later, later age –
Alice: Mmm, that was smart!
Margaret: And I don’t know whether any obstetrician would say the same thing, but, uh, that was his answer. . . . And I guess the approach, in today’s world, the approach is even more so, with managed care – I work in a health library . . . and that’s being encouraged, to do your own research, because you don’t have the time with a doctor, so, get more information, and write down your questions, so you have everything – and hopefully you have a doctor who’s willing to – I mean, I have made more suggestions to my doctor, or I will copy things from the health library and say “What do you think of this?” . . . So, you know, in today’s world, where people are encouraged to [read about your own health care], and health libraries, more and more of them are open, and you can get on the Web and do an enormous amount of research – to get your own information. . . .
Cheryl: One of the things that surgeons who are doing genital surgery say is that, it would be too traumatizing for the parents, and the parents wouldn’t accept the baby, so in order to make certain that the parents will accept and love their child, we have to perform the surgery as early as possible.
Margaret: But they still have to ask the parents, is that right? I mean, they couldn’t possibly do it without . . .
Alice: Did you ever regret your decision, to let your daughter decide for herself?
Margaret: Did I regret it? No.
Cheryl [to Sue]: Did you?
Sue: No. No way.
Cheryl: Did you ever think that you wanted to go and get the surgery for yourself?
Sue: Nope. Never occurred to me. I mean, until you started saying [to me] that people in my situation often had this surgery. . . I said, “You gotta be kidding! That’s outrageous.”
Margaret [to her daughter]: When did you find out that you were different? You had two sisters.
Sue: Oh, I knew some – seemed, from comparing myself to them, that I was different. But it wasn’t a problem. It wasn’t – it was never an issue.
Margaret: We had various differences. We have an adopted boy, and all my girls had umbilical hernias – you know “outies”? -- and instead of having penis envy, he had an “outie” envy, because his was an “innie”. [All laugh.] So, there were other differences. So that’s the important thing – you know, how comfortable are we with differences. And I guess that reflects more – I don’t know whether that reflects…openness to difference…
Cheryl: You said that when Sue was born, they weren’t certain exactly at first what sex she was?
Margaret: Well, I guess because of the enlarged clitoris.
Cheryl: How long did it take them to decide?
Margaret: Uh, I think the obstetrician just told me once that he did a chromosome test because he wanted to make sure.
Cheryl: So was it –
Margaret: While she was still in the hospital. I mean, in those days, you got to have five days in the hospital.
Cheryl: So was it a matter of a couple of days until they told you what sex she was?
Margaret: He didn’t tell me until, I mean – we knew it was a girl but he wanted to make sure. So I guess, that part he didn’t tell me until he had made sure.
Cheryl: And was that disturbing?
Margaret: No, no. [Laughs.] No, I don’t know – I get disturbed about other things!
Sue: Nuclear war, famine . . .
Cheryl: Well, physicians who specialize in this insist that not to know for sure what sex your newborn child is would be so utterly traumatizing that it’s an unthinkable, that we could let anybody suffer that way longer than about 36 hours.
Margaret: That sounds so arcane. I mean, that sounds really – I mean, that sounds like they’re still on the pedestal, where we put them, and that we can’t think for ourselves, and that they’re making all the decisions for us? This is why I say, I mean, I wouldn’t ever pick a doctor who believes – whose philosophy is that way. I mean, sometimes they go, you know, much too deep – they explain, and I haven’t the faintest idea and I don’t remember. If I ever had anything serious, I definitely need to go with someone else and a tape recorder, to have it interpreted. But my doctors certainly do more explaining as to what’s going on.
Alice: Could it also have something to do with the fact that you had lost several children before Sue and were relieved to have an essentially healthy child?
Margaret: Did what have to do with . . . ?
Alice: The fact that you weren’t that worried about this issue, of her being a little different?
Margaret: Oh no. I’m a worrier. [Laughs] No, if there’s something to worry about – if I find something to worry about, I’ll worry about it. I don’t recall worrying. There’s too much else going on. She seemed perfectly healthy. . . . It was a normal delivery, and so, no, I wouldn’t say that I was worried. As I say, I’m not the non-worrying kind, so. And also, you know, I breast fed, and that was not encouraged at the time, it was very hard to do, to keep them from giving her a bottle. They didn’t want to wake the mother up. It [breast-feeding] was really fighting the system to a great extent. . . .
Alice: And, did you talk with Sue about her anatomy when she was growing up?
Alice: Didn’t talk much about it?
Margaret: Never. Never talked about it. She didn’t bring it up, and –
Sue: At one point, after I guess I was 14 or 15 or 16, you mentioned that there was – you had
faced a decision of whether to have surgery on me or not – and before I met Cheryl, I was aware that you had . . . um, I think it was before you told me – it was in such a casual way, you said, “Um, you know, at one point the doctor told me you’d have to have surgery – or recommended surgery” and you said “I don’t think so.” And it wasn’t – I don’t remember the exact sequence of events, but, um . . . you know, it didn’t come as a surprise to you to find out that other people in my situation had undergone surgery.
Sue: [Speaking to Cheryl] Do you recall our early conversation and how things unfolded?
Cheryl: I think that we talked about it [a few years before] . . . And what I remember is that you told me that, um, your mother had just thought about it on her own, and . . . that seemed like for some time, not just like on the spot, but that she had thought about it for some time and then decided that it didn’t seem like a good idea. And that there were more times when she brought you to the pediatrician as you were growing up that the pediatrician told you, “That’s a phallus, and it’s going to have to come off.” Does that sound . . .?
Sue: That doesn’t ring a bell. I remember just very short, casual comment that you [her mother] had made, and when you told me that you had taken [a prescription drug], and, um, and it just seemed like such a low-key issue, I said, “Oh, OK, so that’s history, that’s a decision you made,” and, uh, I didn’t realize that there was so much pressure put on other people in your situation to have the surgery done until I met Cheryl and she told me –
Margaret: I didn’t either –
Sue: . . . that this [having a large clitoris that wasn’t shortened surgically] was a rare case.
Margaret: Never came up with any friends, or . . . No, because the point was to low-key it. I mean, she didn’t –
[Pause . . . .]
Cheryl: When we talk to doctors who are managing intersexed babies, they just really scoff at the idea that surgeries shouldn’t be performed. I mean, one of the things that they say is that the child will be confused about their own sex, and that they will be ashamed, and that they won’t be able to be intimate with anybody as they grow up.
Sue: Wrong! [Laughs]
Margaret: Well, doesn’t that depend on size? Wrong, what?
Sue: On all those counts!
Cheryl: Could you elaborate? [Sue and Margaret laugh.]
Sue: Could I elaborate? Yeah. One by one? [Margaret and Sue laugh.] A, I’m not ashamed of my physiology, my anatomy, B, it has not been a detriment at all to any aspect of my development – social, psychological, sexual, or otherwise – and I have no regrets, and no misgivings about how I am. I wouldn’t rather be any other way, to tell you the truth. You know, even if I could completely dial in what I wanted to be like, or look like, that would be pretty low on the list of things I’d want to change.
Margaret: Much more important things.
Cheryl: Well, I think though what you just asked me is important – is, “Doesn’t it depend on size?” And, I imagine it does depend on size.
Margaret: So, it can’t be one size fits all?
Cheryl: I don’t think there’s anything you can say about everybody, but I think probably a clitoris, if someone is going to have a problem with it, the larger one is going to be more of a problem than a smaller one. . . . There are some people who are born with genitals more ambiguous than Sue’s.
Margaret: Well, I guess a lot of it is our mental attitude. Sue’s, mine . . . and Daddy’s. Some things, I really took the lead in researching. But I don’t recall him [Sue’s father] objecting to anything. So, we were sort of together on that. So I guess that’s the important factor with . . . women. We had to make the decision. Unfortunately some of them take the advice that they’re given. And I’m trying to think whether with any of the kids, being told anything . . . [Another child of hers] was light weight – borderline premature – she was five pounds, thirteen ounces, and they wanted to put her in an incubator. But because I was breast feeding, the doctor managed to keep her out. So it was really the doctor who was cooperative, too. Actually, you know, now I think because we moved into the house when we were still painting, I’m wondering whether the fumes from the painting caused me to go into labor early with [the other child]. I just . . . you know, nowadays, environmental factors can influence – that’s a possibility. You [Sue] were normal weight.
Sue [Speaking to Cheryl]: Are you finding any other success stories, or, favorable stories from your research?
Cheryl: We know a couple people who didn’t have surgery but not because their parents resisted [like your mother did], just because it didn’t happen.
Alice: They just sort of slipped through the system. . . .
Editor's note: This interview was originally published in "Intersex in the Age of Ethics". The book also contains other first-person accounts of intersex as well as plain-language analyses by experts.