Chrysalis Special Issue on Intersexuality (1997)

Chrysalis: Intersex Awakening Special Issue This special issue of Chrysalis: Journal of Transgressive Gender Identities is guest-edited by intersex activists and is completely devoted to addressing intersex issues.

This classic is now out of print, but you can download it (6 MB pdf), read it online, or you can find some of the best material republished in Intersex in the Age of Ethics.

Chase, Cheryl. 1997. Special issue on intersexuality. Chrysalis: The Journal of Transgressive Gender Identities, Fall/Winter.

Chrysalis was the journal of the American Educational Gender Information Service, Inc., now Gender Education & Advocacy.

From the Editors

Intersexed people have until recently been without a voice. Things changed four years ago, when Cheryl Chase founded the Intersex Society of North America and its witty and oft irreverent newsletter, Hermaphrodites With Attitude. This issue of __Chrysalis__, which is edited by Cheryl and Martha Coventry, both of whom are intersexed, reflects the groundbreaking work of ISNA. __--Dallas Denny (Editor)__ We are thrilled that Dallas has given us this opportunity to present to __Chrysalis__ readers these writings about the lived experience and the history of intersexuality. Intersexuality refers to having a body whose sex differentiation is atypical. It is a matter of being different. There are dozens of reasons why a person may be born intersexed, but its major import is the same for each of us: We are different. Although difference is not an illness or a medical condition, sexual difference has been treated as illness since the middle part of the nineteenth century. Medical historian Alice Dreger relates, in "Doctors Containing Hermaphrodites: The Victorian Legacy," just how Medicine turned its gaze on intersexed people in the latter part of the 1800s, and how that legacy is visible in modern day medical treatment of intersexuality. During the early twentieth century, medicine developed technologies, both surgical and hormonal, to alter the body's sexual characteristics. In the late fifties and sixties, treatment protocols were established. The birth of an intersexed child was labeled a "psychosocial emergency"-- but one which was and continues to be addressed by surgeons and endocrinologists, not psychiatrists or sociologists! Current medical thinking holds that having a body which is visibly different from most males and most females is incompatible with quality of life. Intersexed children will be rejected by their parents, stigmatized by their peers, and as adults be unacceptable as intimate partners--doomed to live without love. The medical solution is to erase the evidence of intersexuality from the child's body, and then to deep-six that history of difference by treating it as shamefully unspeakable. The effect of these protocols was to render intersexuals and intersexuality invisible. No medical follow-up was performed, and we certainly did not publicly identify ourselves. Most doctors assumed that we had all successfully blended into the woodwork, and were now living our lives no differently from men or women. That is not the reality. Many of us treated for intersexuality as infants or children have been terribly hurt by the treatment. Genital surgery has damaged or destroyed our sexual and urinary function, as related by several contributors to this issue. Medical attempts to eliminate difference have failed to do so-- plastic surgery does not produce genitals that "pass," and for many of us, our sexual difference looms large in our psychic make-up. In the effort to transform "different" into "normal," medical and surgical intervention succeeds only in compounding the suffering of a child who will always feel different anyway. The first large group of people treated in this way has only recently reached an age at which we have been able to gather enough material resources and practical skills to begin to heal. Medical treatment, by rendering our intersexuality unspeakable, delayed rather than facilitated our healing. The first step was to find each other, so that we could begin to tell our stories, to overcome our shame. We learned that our secret worry--that perhaps others had benefited from this treatment, perhaps we were the only one abused and damaged in this way--was not true. As intersexuals have come together--through the Intersex Society of North America (US, Canada, New Zealand), the Androgen Insensitivity Support Group (UK, US, Canada, Germany, Netherlands, Australia), Hijra Nippon (Japan), the Workgroup on Violence in Pediatrics and Gynecology (Germany)--we have heard the same stories over and over again. Hearing these common histories has given us the determination to speak out publicly and to prevent infants being born every day--about one in two thousand --from being hurt in the ways that we have been hurt. The stories you will read in this issue are an important part of that effort. Until we found each other through support groups, the only images we had of intersexuality were horrible photos in medical books: children standing naked in front of a wall marked out in centimeters; tight closeups of infant genitals with surgeon's fingers spreading the parts; surgical illustrations of clitorises being removed, of Frankenstein techniques for making penises more cosmetically acceptable. And all with the eyes blacked out. When we first came together, we were still too filled with shame to allow our pictures to be published, or in many cases even our real names. Now, we are finding our pride and finding the strength to show our faces. With special assistance from Dallas, we have complemented this issue with a gallery of pictures of us. Pictures of our childhoods, of our lives today, and of the joyful changes that breaking silence has made possible for us. These pictures are our gift to ourselves and to our intersexual brothers/sisters and their parents who have not yet begun their healing journey. And to the world, to declare that we exist, we are human, we are everywhere among you. __--Cheryl Chase__ __--Martha Coventry__ __Guest Editors__

(Not) Another Clit Story

Caught Between: An Essay on Intersexuality

__D. Cameron__ It is only recently that I have discovered the term "intersexed" and how it relates to my body. I like the term because I prefer more choices than male or female. I think there is a continuum of Male to Female; like shades of gray from black to white. It wasn't until I was twenty-nine years old that a label was put on my physical differences, differences that I never quite understood. I had large nipples on smallish breasts, peanut-size testicles and cellulite-type hairless fatty tissue over most of my body. I was told at an infertility clinic that I had an extra "X" chromosome and a karyotype of XXY-47. This is commonly known as Klinefelter's syndrome. I was informed that I was genetically sterile and that my "sex glands" produced only 10% of what was considered normal testosterone levels for a male. I was advised to immediately start testosterone replacement therapy. I was told that my "sex drive would increase," I would "gain weight and my shoulders would broaden," and that I would have to do this every two weeks for the rest of my life. The medical journals called my condition "feminized male." I had always felt caught between the sexes without knowing why. This reality was not evident at my birth in 1947. When puberty came, I knew I was different from other boys. I was often teased for having small testicles, and I had gynecomastia (breast growth in a male). It was an awkward time for me, as I was very tall (6' 9" at 15 years old). As I now have learned, testosterone is needed to stop the growth of the long bones, in arms and legs. I was a self-conscious, sensitive and emotional kid. My mother was concerned about the lack of development and after several visits the doctor--incorrectly--assured her that I would grow up "normal" and that I could produce children. Not having any other information or knowledge about my situation, I faithfully got my 300 mg injections of testosterone every two weeks. I soon found myself going through puberty all over again--in my early 30s. I was a first tenor turning into a baritone. I began shaving, and eventually grew a beard. Hair sprouted everywhere on my once smooth body. There were phenomenal changes for me both physically and psychologically. The greatest change was having so much sexual energy. For the first time I appreciated what the word "horny" meant. During this period (1976-1981), I did not have any counseling for emotional issues. My main support came from my life-partner, Peter, whom I met in 1978. I dealt with most of my "transformation" alone. The first few years of testosterone replacement therapy, I had the sensation of "reverse menopause" combined with the feeling that my female persona was dying. It was an overwhelming time of confusion, yet mixed with discovery. I didn't understand why I had been chosen to have this experience in my life, and wondered whether I should instead have stayed who I was. In the end, because I was so tall, I decided to proceed, in order to find out what being "male" was like. I often regret that decision. When I first moved to San Francisco in 1979, I got my injections at Kaiser Hospital, but by 1983 I had learned how to inject myself. I would have to get into a semi-yoga position to push the large needle intra-muscularly into my buttocks. For the next ten years I became quite strong and trim. I exchanged sedentary employment for more physically challenging work, and started my own home and garden renovation business. By now my once hairless body was covered--much to my dismay--with hair, and my hair was beginning to bald. I did not realize that these were side-effects of testosterone replacement therapy. Now my body appeared very masculine and I was told that, to further "improve the effect," I could have testicular implants and have my breast tissue removed. I chose not to have surgery. In 1991, my sex drive began to diminish significantly. I feared that my testosterone replacement therapy had failed. I started to think of the testosterone as a poison in my system. I started to get back in touch with my female side--and realized that I had never completely lost her. Emotionally and spiritually, I have always felt more feminine, and I began to doubt the correctness of the decision I had taken, in 1976, to find out what being male was like. My sexual orientation had not changed -- I was attracted to men. I considered lowering my hormone dosage, but doctors advised against it. There would be serious sideeffects, they told me. But could the sideeffects be any more painful than the fear of prostate, breast or testicular cancer by continuing the injections, I wondered? Why wasn't I told any of this when I started hormone therapy? Have I become a "virilized female?" (Not unlike a female-to-male transsexual with a penis?) I felt caught between again. For two or three years, my doctor raised my testosterone dosage to 350 - 400 mg every two weeks to see if that would improve my sex drive. My sex drive was unchanged, but I started having more prostate and urinary problems. I was put on another drug to try to compensate for the side-effects of the first drug. In October 1995, I attended the first national conference of K.S. & Associates (a Klinefelter's Syndrome support group) in Washington DC. The Conference was a disappointment to me, in that intersex and gender issues were never discussed. I assumed this was probably due to homophobia on the part of the group's founders (who are parents of children with Klinefelter's Syndrome) and of the supporting staff of Johns Hopkins Hospital. There was a small group panel which was to discuss gender, but instead they discussed sexual orientation. The panel immediately became polarized and did not move forward. There were about eighty people with Klinefelter's attending, including quite a few children. Some twenty of us adults spotted each other as queer, and got together spontaneously to discuss our sexuality and our disappointment over the lack of support by K.S. & Associates for gender issues. At that conference, I learned the FDA had just approved the Androderm patch, a method of delivering testosterone without injection. I was unable to wear the Testoderm patch because my scrotum is so small that it does not provide enough area for the patch to work on. In December 1995, I decided to stop my injections as they had become painful and I needed a rest after nineteen years. Some side-effects occurred within five weeks: fatigue, mood swings, depression, more difficulty urinating. I had my testosterone level checked. It was 12 (normal male levels are 400 to 1100). I realized that I could not return to where I was in 1976, before the testosterone injections, and decided that it was best to stay on the journey I had started. Somehow I would cope. I knew that being "caught between" would be my life challenge and that would be OK since I felt whole with all my unique parts. I needed to treasure my "X"ception. In January I returned to testosterone therapy, with one Androderm patch a day. My energy improved, but flattened out in two weeks. Three weeks later I began wearing the recommended two patches to see if my moods and depression would improve. They have. My sex drive, however, is still nonexistent, and I'm not sure why. It has been strange adjusting to wearing patches. They must be changed once a day and cannot be worn on the same site again for seven days. You rotate the placement, with preferred sites being upper arm, back, thigh or abdomen. They are about three inches in diameter and have white rings around the circumference of the adhering portion. I feel self-conscious at the gym and in the shower. The last thing I wanted to do was draw more attention to myself. Having done this, I realize that this is an important educational opportunity. There are many courageous intersexed people on our planet, not just males and females. Our sex hormones define us or set us free from categories. When others look at me they probably see a big hairy bearded man. But I know the truth. I will strive to continue to redefine myself.

Doctors Containing Hermaphrodites: The Victorian Legacy

__Alice Dreger, Michigan State University__ In the early 1880s, a French woman, identified in medical records only as Sophie V., went to a local surgical clinic seeking advice and help. At the age of 42, Sophie had now been married two months to her first husband, but for all their trying he could not "accomplish the conjugal act" with her; he just could not seem to penetrate her vagina. The attending physician, identified in the record as Professor Michaux, examined Sophie's genitals and quickly discovered the "problem": Sophie V. was a man, no matter what she had been led to believe all of her life. She had a "penis" five centimeters long, albeit lacking the urinary- tract opening in the usual place. Her "labia" contained at least one testicle. And, Michaux noted, of course her husband couldn't get his penis into her vagina, because she didn't really have one! Sophie understandably thought Michaux was either cruel or crazy. True, there had been some question about Sophie's sex when she was born, and her parents had taken her to a medical man when she was but a few weeks old. As the medical journals records, at that time "the man of the art did not find the thing sufficiently clear, and he asked the parents to return later with the child." Sophie's parents did not, though, because they feared the man might operate on their child and accidentally hurt or even kill her. Instead they just decided Sophie must be a girl, and so she was raised. When she was in her early 20s, Sophie developed what she thought was a hernia, and she wore bandages to support it from that time forward. This "hernia" was, according to Michaux, the descended testicle. Now she was married to a man, one who wanted to penetrate her in a particular way but couldn't seem to do so because Sophie lacked the parts. What to do? The answer to the medical man Michaux was simple: Sophie had testicles and a penis; she was a man; she was therefore not really married (no matter what she thought) because no marriage between two men was a true or legal marriage. She--or rather he--should have his civil status formally changed to male and start acting his "true" sex. Sophie was a man. The answer to Sophie was equally simple: She felt like a woman, she dressed like a woman, she had always been a woman. She was married to a man whom she loved and who loved her. The doctor was either crazy, or wrong, or confused, or at least not worth listening to. Sophie had no interest in becoming a man. Sophie was a woman. Sophie V. had the sort of anatomy that in her day qualified her to be labeled in the medical literature a "hermaphrodite." This is still a common use of the term in our vernacular, although medical experts have grown much more specific with regard to distinguishing one kind of "ambiguous" genitalia or "intersex" from another (more on that later). Sophie's genitals did not look much like your supposedly- standard male or female type, but more like something in between, or something fairly different, and this was what, in the nineteenth century, generally made one a "hermaphrodite." In Sophie's time, the word "hermaphrodite" was sometimes also used to refer to people who today would likely be classified as transvestites, transsexuals, homosexuals, feminists, bearded women, and so on. But when identities got sorted out in the way they did in the nineteenth century, "hermaphrodite" came to refer fairly specifically to people born with unusual genitalia. Most people labeled male have one penis each, a scrotum, two descended testicles, a prostate, no vagina, penile erections and ejaculations, and so on. Most labeled female have one clitoris each, a vagina, two ovaries in the abdomen, no testicles, erections (in this case of the clitoris), a period of life in which they menstruate, and so on. But human anatomy is amazingly variable, intentionally and unintentionally. A fair number of babies are born with internal and/or external organs that don't fit the "most" description of malehood or femalehood. How many is hard to say. Such statistics depend on definition (what is a standard penis? or an acceptable vagina? what should be counted as intersexual, or ambiguous?), on examination techniques and standards, on record-keeping and reporting of statistics, on frequency of variations within a given sample, and so on. But I think we can say with confidence that at least one in every two or three thousand births results in a question about the sex of the child. Add that up and it comes to thousands of cases per year in the US alone. So unusual sexual anatomy is not really all that unusual, not nearly as unusual as most people assume. Until graduate school, I had never known about it, and I meet people all the time who have never heard of it until they met me and asked me what I research. Even people who were born "intersexed" may not know of the phenomenon, since they are often never told the diagnoses written in their medical records. But people in the medical profession know it isn't too rare. Doctors are trained to be on the lookout for intersexuality, and it is standard material in all medical genetics, gynecology, and urology textbooks. Medical students in the course of their education all learn about "intersexuality," and most gynecologists I talk to eagerly tell me about a number of cases they've personally seen. Today almost every major hospital has a standard protocol for what to do when a child is born whose sex is confusing or suspicious. Intersexuality is even becoming more visible in pop culture. The recent movie "Flirting with Disaster" featured a bisexual (interesting choice) who was born with a hypospadic penis, that is, an organ like Sophie's that looks like a penis but doesn't have the pee-hole in the usual place; a recent episode of the television drama "Chicago Hope" included a story of a baby born genetically male but with an unacceptably small penis. (The doctors in that story decided, as is generally the case in the US today, a boy with a wee penis is no boy and so the child should be made-- hormonally, surgically, and socially--a girl.) As possibilities for sex/gender identities expand and become inhabited by more and more people, interest in intersexuality grows. I am a social historian of science and medicine, and I became interested in the scientific and medical treatment of hermaphrodites because so much literature has been written lately on the social construction of gender, but I wanted to know how "sex" ("male" and "female" anatomy and physiology) came to be thought of the way it is today. After all, although we often act as if it is, "sex" is not a completely self-evident thing. We say a hermaphrodite is a person with unusual sexual anatomy, but when you come right down to it, what is sexual anatomy? What do you count, and how do you count it? Do you have to have a penis to be a male? If so, what size, and when do you have to have it--at birth? At the moment in question? Do you have to--or have to be able to or have been able to--become pregnant to be a female? Or is it just those XX and XY chromosomes? If so, are women with XY chromosomal bases not women, even though they are born with female-looking genitalia and develop like most females at puberty? (This is the case in people with an XY-chromosomal basis and a condition now described as androgen-insensitivity syndrome, or AIS.) Is it the case that those of us who don't know if we are XX or XY don't know our sex? As the Olympic Committee-- which keeps trying to figure out who should count as a male athlete and who a female--has discovered the hard way, none of these possible sex signifiers alone really suffices to capture the usual way we think about sex, even if we claim they are the ultimate, true, sexual signifiers, because there will always be people we are willing to count as male or female who don't fit any given definition. Do we then use a sort of "Cosmo girl" test and say that, if you have, say, "five of the following" traits, you count? Perhaps such an additive system would work. But then one would still have to decide what to add. What size would a phallus have to be to count as a clitoris or a penis? Would one have to wait until puberty to see what happens with the breasts, the body hair distribution, and so on? More to the point, what would count as sexual anatomy in such an additive system? If in Sophie's time, as was the case, most women had long hair, should head hair have counted as part of the sexual anatomy? (English doctors said it should, and French doctors it shouldn't.) And if, as Darwin claimed, the females of most human races were fairer-skinned than the males of their races, should skin color count towards sexual anatomy? But, wait, we wouldn't count those anymore. Well, then, is the question of what counts as "sexual" specific to time, place, culture? That, too, seems strange--most people want to say some parts always counted and always will count for malehood and femalehood, that there is a single "real" maleness and femaleness, even if we can't fit everyone into that definition. What I find is that it is those tense and tentative definitions of "real sex" which reveal so much about how we think about and limit sex, and, much more frighteningly, it is those definitions to which people like Sophie, the fictional baby on Chicago Hope, and real children born today are subjected. When I started this research, I assumed it would tell us good things for people who believe in the goals of radical feminism and the queer rights movements. It has. It has told us that, like gender, sex and sexuality are concepts which are in very important ways historically developed and culture-specific. But it also tells us some frightening things about what happens to intersexuality and people born intersexed. This history matters more than I ever thought it would, in some ways more than I wish it would, for I wish things looked pretty good compared to the way things used to be, and I don't find that to be the case. For the last several years, I have been working on a large study of the biomedical treatment of human hermaphroditism in the late-nineteenth and early-twentieth centuries. I am currently writing a book on the subject, and in the space here can only touch on some of the larger points. What makes the period I study so interesting is that it was a time when much was in flux. Scientists and medical doctors did not yet hold the sort of phenomenal cultural authority they would come to hold in the mid-twentieth century. Theories of sex, embryology, evolution, and so on were in periods of intense debate and development. And finally, this was a time when dominant sex roles were being increasingly challenged, with vigor as never before, especially by feminists and homosexuals. What a time to be a medical man faced with a person like Sophie! Increasingly it was specifically the medical man who would be faced with such people, for in the nineteenth century as never before, the sexual anatomy of the masses--like all other aspects of human sexuality--became the purview of the medical profession. What I find in my research is basically this: Increasingly as the nineteenth- century and then the twentiethcentury progressed, medical and scientific men did all they could, conceptually and practically, to limit each and every body to a single sex. In the nineteenth- century it wasn't enough to just pick; the sex assigned had to be what they called the "true sex" of the body. Every body was assumed likely to have a single true sex, male or female, a true sex that could be masked by ambiguous anatomy or "strange" behavior, but unmasked by the able medical man. And, as experts reminded their sometimes-provincial colleagues, it was up to the medical man to make sure everyone was sorted and sorted right. Otherwise one might end up with "perverse" cases like Sophie's, where men unknowingly engaged in sexual relations with other men, or cases like Herculine Barbin's, in which a masked man "accidentally" penetrated the sanctuaries of women and... well, penetrated the sanctuaries of women. The clinical problem was how to figure out what each person's true sex was. The combinations could be quite confusing--breasts on men, beards on women, genitals that seemed to be a little of both or a lot of neither. Medical men fretted over cases in which so many traits seemed to contradict the "sex" of other traits, traits including voice pitch, genitalia, hair distribution, fingernail quality, breast development, angle of the knees, quality of the gaze, sorts of desires. In fact, even though they never doubted that there were two, and only two, distinct human sexes, medical men of the nineteenth century had a devil of a time agreeing what sex was, or more specifically, on what should count as the necessary or sufficient signs of sex. Yet they were, as a group, increasingly reluctant to allow that any body could be a true hermaphrodite--a person truly both male and female--and doctors grew increasingly interested in keeping every body sorted lest sexual havoc ensue. It was bad enough that people like Oscar Wilde and Susan B. Anthony questioned social borders; the last thing the social body needed was doubts about the anatomical borders on which the social borders had been constructed! The logical solution was the one chosen by biomedical experts: pick a single binary trait which could be used to sort otherwise ambiguous bodies. In the 1890s, a consensus emerged, according to which "true sex" would be signified by the gonadal tissue, that is, ovarian or testicular tissue. Does Sophie look confusing? Well, the rule went, if she has testicles, she is simply a man; if ovaries, a woman. This seemed like a good solution. Why the gonads? After all, why not pick something more readily accessible, like breasts, or facial hair? The gonads made a good signifier in part because they were binary and doctors wanted to envision sex as binary. Gonadal tissue postnatally tends to be pretty easily identified as ovarian or testicular in nature. (An awful lot of men have breasts and a sizable number of women have mustaches.) Besides, it seemed like the gonads were the key to sexual identity; after all, what is a man but a person who can impregnate via his sperm, and what is a woman but a person who can produce ova and thus be impregnated? Even if not all men and women were fertile or active in these ways, it seemed like a logical defi- nition, especially at a time when men and women were almost universally in scientific and popular texts described as mere manifestations of their reproductive roles. Late-nineteenth century biomedicine was also very focused on tissues as key (especially in research on disease), so it seemed logical to assume that the tissues held the answers in this case. Finally, there were growing hints that gonads produced some sort of "internal secretions" (what would later come to be known as hormones) which in turn played important roles in sexual development. Still, with all these good reasons to pick the gonads as signifiers, the chief impetus to pick a single signifier was the practical messiness of sex--the blending of and disagreements over the plethora of "sex" traits. Almost every body had either ovarian or testicular tissue, and almost none had both or neither. This meant almost everyone could have a single true sex. Additionally, while it was agreed by most doctors then and now that some people really do have both ovarian and testicular tissue, in the 1890s, clinical techniques did not allow for the required microscopic diagnosis of living true hermaphrodites, so the threat of true hermaphroditism was satisfactorily subdued. At least everyone living would seem only to have one true sex which they could be advised to heed. This, then, was the gonadal defi- nition of true sex, the definition that has stuck in the technical literature all the way up until today. As was developed in the nineteenth century, the medical classification system for intersexuality now divides us all up into five basic types: males have testicular tissue and are "unambiguous"; females have ovarian tissue and are "unambiguous"; "ambiguous" people with testicular tissue are called male pseudo-hermaphrodites; "ambiguous" people with ovarian tissue are called female pseudohermaphrodites; and those rare people with ovarian and testicular tissue are called true hermaphrodites. These are what Anne Fausto-Sterling helpfully abbreviates as males, females, merms, ferms, and herms. She also suggests we accept and broadcast this five-sex system of classification. So, are all people like Sophie now assigned a sex identity according to their gonadal tissue? Well, no. After all, what the heck is one supposed to do with a true hermaphrodite, or a woman with testicles, if you want to assign everybody according to gonads and still maintain the "old-fashioned" ideas of sex? This very real problem emerged in the early twentieth century because of the development of new diagnostic techniques, namely laparotomies (exploratory surgery) and biopsies (sampling of tissue without removing the whole organ). Now a doctor could diagnose a living true hermaphrodite, but the legal and social system wasn't ready to handle it. And, even if you could figure out a way to cope with true hermaphrodites --and those were pretty rare and so not too threatening to the system--it was becoming clear that a relatively frequent condition existed in which a patient could look, sound, act, and feel for all the world like a female but would have testes! This is the condition now known as androgen insensitivity syndrome (AIS) or testicular-feminization syndrome. We understand this as a case in which a genetically-male individual has testes which produce testosterone but her/his body can't "read" that testosterone (the receptors are lacking). AIS individuals are often classic Western womanly beauties with a female vulva, long limbs, hairless bodies and faces, rounded hips and breasts, "feminine" voices. (There is a rumor that many women high-fashion models are actually AIS "males," a claim which, whether or not true, I enjoy suggesting to my undergraduates who belong to the more sexist and heterosexist fraternities and sororities.) While the explanation for AIS remained elusive in the early twentieth century, the phenomenon was well documented, and diagnostic techniques now allowed easy identification of such cases. Were these people to be assigned male because they had testes? What would stop other "women" from claiming they were really men and demanding such "male" rights as the vote? The gonadal definition seemed now, in practice, completely unacceptable, even if in theory it allowed easy sorting. And so there began in medical practice a retreat to the external genitalia. We often think of the emergence of the concept of gender identity as a twentieth-century step toward liberation, away from traditional sex roles, and indeed it was in the realms of gay rights and feminism. Freeing "gender" from "sex" meant freeing oneself from claims that traditional sex roles emerged from an indelible biological reality. But in medical treatments of intersexuality, ironically, the concept of gender identity (an identity beyond anatomical sex) emerged specifically so that traditional social concepts of sex and sex roles could remain undisturbed by messy bodies. In theory doctors retained the gonadal definition of sex with five categories (male, female, merm, ferm, and herm), but in practice such a definition would have required a new social category of a third sex (for true hermaphrodites) as well as the labeling of very womanly AIS patients as men. This would have meant some rather profound social disarray or at least some important changes. So in practice doctors increasingly decided to assign a gender identity to each patient--strictly boy/man or girl/woman--according to what a person's social role already was or was likely to be given that person's appearance. The earliest suggestion I have found that doctors make practical "gender" assignments was in 1916. In the text the author, an English surgeon, suggested that such a clinical solution would ensure that pretty girls could still get married even if their sex was technically confused or confusing. The desire for social stability, combined with the exigencies of new diagnostic technologies, drove medical men in this direction. So today, theoretically at least, women have the same rights as men, and being gay or lesbian is supposed to be acceptable to medical professionals. One might expect to find a greater tolerance, then, of ambiguous sex, since we tolerate more "ambiguous" gender roles. Alas, such is not the case. Today, as Suzanne Kessler has documented in her 1990 article in Signs, ambiguous babies are typically sorted early into girls and boys in this way: Genetic and gonadal males with small or otherwiseunacceptable (and unbuildable) penises are made into girls, for a "satisfactory" penis is considered the sine-qua-non of boyhood. Babies born with workable female reproductive systems are made into more-convincing girls, even if that means destruction of the clitoro-penis and other parts. Doctors seem to think very little of deciding a child will be put on hormone therapy for the rest of his/her life. "Normal" has two basic meanings. In one sense "normal" is used to describe the average or typical. But in another it is used to speak to an ideal, a perfect sample. The word was first used mathematically to describe a kind of angle, namely a right angle (ninety-degrees), and we see even in that term--right-- those two meanings, one descriptive (as in ninety-degrees) and one prescriptive (as in correct). So too we have the "most" definition of sex as given above --most people labeled female have labia minora and majora, a clitoris, etc.-- and that is a definition of normal sex in the first sense, that is, in the sense of typical sex. But, as in so many areas of cosmetic surgery, the definition slips from the descriptive norm (what is average) to the prescriptive (what is ideal, what must be), and massive amounts of medical treatment are brought to bear to attempt to make acceptable-looking girls and boys out of "unacceptable" children. This was already starting to happen in the late nineteenth century. For instance, surgeons, particularly in France, worked to develop techniques to remake hypospadic penises so that patients with the condition could pee standing up. In a case very similar to Sophie's, a French surgeon offered to make his patient a more workable vagina. (The surgeon was soundly reprimanded by colleagues who accused him of contributing to a "perverse" situation, namely a marriage between two "men.") There are two differences today: Today the surgeries attempted are far more ambitious, and they are typically performed on babies or children. The logic is that any child left to grow with ambiguous genitalia will suffer irreparable psychological harm. This sort of extraordinary surgery is known in medicine and history of medicine as "heroic" surgery; this refers to attempts to perform--against the odds--the seemingly impossible. When the surgery doesn't work--when it results in scar tissue, dysfunction, disfigurement--that in a way seems OK, because it was, to start with "heroic" in its aim. But is this heroic? Doctors tell themselves and us that they do these sex-assignments and sex-therapies for the sake of the individual patients, and they must believe this in order to do what they do. But if we look at the effects, we must wonder. Is there good evidence that, from a medical point of view, the time to treat cases of genital ambiguity is pre-puberty? Or does this often result in sexual and urinary dysfunction and disfigurement? Is it true that no one could psychologically survive a big clitoris, a bifid scrotum, a hypospadic penis? Are the genitals shaped by the scalpel necessarily less traumatic than those shaped in the womb? Given the apparent lack of followup studies to show whether these surgeries work most of the time, physically and psychologically, and given the tragic stories of many medically reshaped hermaphrodites, one must wonder if this is "heroic" or just misguided, even heady. Any reasonable person who takes a close look at the literature cannot but conclude that the current treatment of intersexuality has far more to do with social needs regarding sex borders than the child's or even the family's needs. If the patient and family were the chief concern, adequate follow-up studies would be done, peer-support groups established and made known, and regular psychological counseling offered. I strongly suspect, also, that the ethos of surgery forces this sort of treatment-- an ethos which dictates the surgeon must always recommend surgery and must always attempt the difficult or impossible, indeed the most "cutting edge" --pun painfully intended-- solution. (There is a saying in medicine about the three basic rules: If it works, keep doing it. If it doesn't work, stop doing it. And never go to a surgeon unless you want surgery.) If I look back in history, to times we tend to consider less liberal, less accepting of difference, I find that in fact hundreds of hermaphrodites like Sophie survived. Yes, some were traumatized, some ostracized, some confused. But we see also people who just went on, who didn't much care, who found lovers and friends and lives as they were. There is, for instance, the tale of the French peasant vineyard-worker and his bearded wife, a wife whose beard did not bother her husband; the story goes that they each shaved once a week for mass, and no one really questioned her beard since vineyard-workers were known to be particularly strong and virile. How varied are the stories! It pains me to no end to see, repeatedly, the story of Herculine Barbin, a nineteenth-century French hermaphrodite, used to make the claim that all hermaphrodites left alone would kill themselves as Barbin did. Barbin was in fact not left alone--her sex was reassigned to male, perhaps as she wanted and perhaps not. No better is it for us to claim she killed herself because of the reassignment. Why Barbin did commit suicide will never be known for sure. But we can see that, before the days of early diagnosis and early treatment, many hermaphrodites survived, had lovers-- just lived. So too were the approaches of the doctors remarkably varied before the time when medical training became standardized and hermaphroditism experts and protocols emerged to rule the day. How many definitions of sex there were, how many opinions of how to settle questions of sex. Perhaps this did not make things any easier on any individual patient, but it shows to us the faint signs, like faded cave paintings, of all the roads not taken, all the roads we could go back and try to take. And so I find myself wondering if we can start to change the definition of heroic medicine, away from one which regards as heroism extraordinary attempts to shape the identity of a baby (or anyone else) according to the received limits of acceptable identities, and towards one which regards as heroism the willingness to question medical tradition, to question colleagues' judgments. I dare to envision a new road taken, a road of honesty about intersexuality, a road along which we find the active encouragement of acceptance of anatomical diversity, a road towards a world of medicine in which the patient's wishes are at least seriously considered, if not followed. bq. Historians--since we care about dates--have a habit of putting the birth dates and death dates of various important figures after the first introduction of their names. For example, 'Jane Smith (1874-1920) was well known for her use of split infinitives.' When I was working on my book, I instinctively stuck in the birth and death dates after the introduction of each of the important doctors who treated hermaphrodites. One day I realized I should do the same thing for the particularly famous hermaphrodites whom I was introducing--Herculine Barbin, Marie-Madeleine Lefort--and wham! Suddenly they came to life as people who had been born and who had died--they were historical figures. Until that time they must have occupied in my mind the same sort of position they did in most of the medical folklore--unusual characters who pop in and out with mythical, often tragicomic lives. Now they were real. They had achieved a parallel existence with the doctors. They had finally been awarded the great historical parenthetical tombstone they had earned.

Finding the Words

__Martha Coventry__ When I was growing up, and well into adulthood, I used to have a waking nightmare that a squad of men in uniforms would arrive at my door, take me into the night and execute me for not being a real woman. In my mind, they were always justified and I never raised my voice in protest. When my youngest daughter was two and I was 35, I was incapacitated nearly to the point of self-destruction by some unknown shame. I began intensive therapy, desperate to discover why I felt so bad, so tainted, so wrong. One Sunday morning, feeling inches away from disaster, I called my therapist. "I don't know if this is important," I told her, "but I had this operation." There. I had said it out loud, and in that instant a tiny sliver of light appeared. I knew nothing of what had been done to me when I was six years old. One evening, my mother came into the bathroom where I was playing in the tub. She told me that the next day I would have to go to the hospital for an operation. I remember something rushing out of me at that moment, like wind through a closing door. Did I put my hands down to protect the clit that stuck out innocently from between my labia? Not a word of explanation was ever given for the surgery, and when they cut out my clit, they cut out my tongue. I could not cry out to save myself, and that stifled scream wedged in my throat, blocking my voice. Endless fears about who and what I was took the place of words and they settled like darkness over me. At age eleven or twelve, I had my first orgasm. Somehow I had brought myself to the edge and I just touched the opening to my vagina and it happened. Shockingly. Perhaps it was this new and powerful experience of pleasure from a place that held so much pain that made me determined to find out the truth about my body. A few nights later I crossed the living room, my bare feet on the cool cork squares carrying me towards my parents, the two people who were my only safety. They sat at the dining room table. Big black and white photos of my sisters and me were laid out under the light. My mother picked mine up and I heard the word "boy" come out of her mouth. Fear heaved in me. I was a boy. I was supposed to be a boy. It was too late to stop myself. "What was that operation I had?" I blurted, as my gut tightened against the blow of the answer. My father, a surgeon, looked at me. The father I loved with abandon. The father who agreed to let this be done to me. The father who cherished me above all else, turned and, with no idea of what his words would do to the rest of my life, said, "Don't be so self-examining." The moment of silence that followed that brusque dismissal lasted for almost twenty-five years. In warfare there is a technique called sapping. Saps are trenches that are dug underground, unseen, silently, beneath an enemy's fortifications. Eventually the walls collapse under their own weight. To be lied to as a child about your own body, to have your life as a sexual being so ignored that you are not even given the decency of an answer to your questions, is to have your heart and soul relentlessly undermined. The thing that makes you wild and free is insidiously crippled. To reclaim that childhood state of wildness, you have to rescue your own life and learn to speak about who you are. The life you had no power to save when you were three weeks, or eighteen months, or six years old, or thirteen, you have to save at twenty-eight, or thirty-six or fifty-five. You have endless chances. And it is never too late. So it was at thirty-five that I first started to ask questions, ever so carefully, gently, still protecting the little girl terrified of her own reflection. I spoke with my father again, asked for my medical records, and heard my gynecologist read me the summary the hospital sent. Both men had the same sensible answer when I asked what sex I really was: I had children, wasn't that proof enough? No, as a matter of fact, it wasn't. During this time, I went to a resort in Arizona with my husband. I was fragile, with fear and love of myself battling in my head. For a banquet the first night, I wore a low-cut, elegant dress. My image in the mirror mocked me. My then short hair did not soften my throat, which seemed masculine and muscular. My arms stuck out hard, sinewy, and tan from my sleeves. I didn't look or feel like a woman. I was in drag. I was a fraud. A mother with two young daughters at home, I spent the entire four days trying to find my way out of believing I was a man. It was as close as I'd come to losing my identity completely and it frightened me back into total and terrified silence. No more questions, no more exploration. I slammed shut and bolted the door that had so briefly and tentatively opened. Eight years later, I got another chance. Sex had been my obsession all my life. I started young, playing naked with a girl friend in a sleeping bag, talking another into licking my pussy, being peed on in the woods by a neighbor boy and liking how wrong it felt. My cunt was alive, my scar extra sensitive then to any touch. But wreaking havoc with my budding sexual self was the constant reminder that I was a freak. I was not right in the place where everyone else was perfect. I wanted to be normal. I wanted to fuck. I wanted to be the hippie girl who smoked pot and got screwed everywhere and all the time. The first part came easily, the second part terrified me. The secret I carried about my body stopped every hand as it began its inevitable descent, and cut short every half-naked romp in narrow cabin beds. In high school, it was the sluts I envied, the girls I thought were so free with their bodies. Everything womanly and sexual, even yeast infections, had its allure. I fell in love my freshman year in college with a kind and safe boy. One night, in bed, I told him about my operation--that I was different from other girls. He looked up from between my legs, said "Oh," and went back to lapping happily away. Our first attempt at intercourse was right out of Sylvia Plath--it hurt, I hated it and it didn't work. I married the boy and we spent hours together loving each other's bodies, learning to come at the same time using our hands and our mouths. But in this society, and in my mind, it was the old in-and-out that counted. It was my measure of a woman and I was lousy at it. My vagina was shut tight and there was nothing that could be done about it. Not even my children could pass easily through that opening, and had to be birthed by Cesarean section. Years of fantasizing about sex ended with a new shame. A subtle and ever so devastating variation of the old shame. When the inevitable end came to my marriage, I crashed. It was the response of a woman who was sick to death of being weird, of pretending, of feeling exhausted by a life of envy. Staring me in the face was the unavoidable fact that I was a sexual failure, had never satisfied the man who loved me, and had begun to hate the effort. I narrowly avoided the hospital because of sheer will, the constant attention of my father, my friends and my therapist, and the right prescription. When I surfaced, I found a raw and beautiful new life waiting for me. The Sufi poet Rumi said that the only way out of the pain is into the pain. I began to quit running from the fear and pain of my life. For a banquet the first night, I wore a low-cut, elegant dress. My image in the mirror mocked me. My then short hair did not soften my throat, which seemed masculine and muscular. My arms stuck out hard, sinewy, and tan from my sleeves. I didn't look or feel like a woman. I was in drag. I was a fraud. Instead, I turned to embrace them. In the light of a growing affection for myself and my body, they started to lose their power to harm me. Alone much of the time, I would read poetry aloud and sing out in a new strong voice when I walked my dog at night. I started swimming in the nude more and more. I lay in the woods naked, on the earth, in the leaves. I began to crave the feel of my own flawed body, its smells, the taste of its juices. I found new ways of getting pleasure, new ways to come. Sex with myself got noisy and I loved crying out and hearing the sound explode out of me. In the midst of this love affair with myself, my father died. He was my hero, always, and my most beloved companion. The profound devotion we had for each other is one of the great blessings of my life. To have me clitoridectomized in order to protect me from being mistaken for a hermaphrodite was not meant as a betrayal of me, but simply one of those most diffi- cult decisions parents make that end up, tragically, to be wrong. Withholding the truth, when I asked him about myself, was a cruelty he could not understand at the time. Our life together was graced with too much love for bitterness to ever have a chance. In the end, his death did a surprising thing for me--it cut me loose to finally live my own life. Lesbianism had always danced around me. Growing up, I thought that if I were attracted to girls, it would mean I was really a boy. When I read of women who loved women, like Gertrude Stein and Virginia Woolf, I ached at their bravery to claim who they really were. And although I felt an odd bond and natural connection with them, I didn't even dare to play with the possibility myself. I had no idea who I really was, and I was way too afraid to find out. Besides, even if their loving was strange, their bodies were normal. I put myself, again, outside the fold. When I was twenty-two, I went into a gay bar with a friend in Quebec City, where I was studying. I was entranced. For the first time, in that dark and smoky place, I saw women dancing pressed up against each other. I went back to my dorm room and cried for the next four months, filled with anguish at my desire to return there and my fear at what it would prove about me. In the twenty years that followed, a sadness lived in me always that I would never know that kind of love. With the end of my marriage, the death of my father, and a growing determination to look squarely at my own life, I had no reasons to hold my desire at bay any longer. I was finally ready to let myself slowly fall into the patiently waiting arms of lesbianism. All the queerness I felt growing up finally had a home. Being a dyke fits my strangely hermaphroditic self so comfortably, so wonderfully. It feels totally and deeply right. Embracing my love for women not only makes me happy, it is the thing that I had been waiting for to give me the courage to look at my body, and at who and what I truly was, without turning away. I could never have found my intersexual self until I had found and loved my sexual self. A friend introduced me to a new gynecologist--a wise, irreverent man--and he and I explored my body in detail. We prodded and spread, measured and probed with my complete medical records in hand, to understand what I might have looked like and exactly what the surgery had removed. I began to write vignettes of growing up, of sex, of gender struggles, of madness. One of the things about being born with genitals that challenge what is considered normal, is that no one ever tells you that there is anyone like you. You feel completely and utterly alone. Even today, young children are never put in touch with others who are going through the same thing. You are purposely isolated, your difference covered up--and it is horrible. One day, I met with my writing teacher at her house. Next to my place at the table was a newsletter. __Hermaphrodites with Attitude__ was written across the top. Upon seeing that word, which still had the power to terrify me, written so bold, so proud, I became suddenly unable to speak, even to breathe. Reading the text, I found my story in other people's words. People I did not even know existed. It was as if my whole life had been lived to reach just this one moment. I took the newsletter home, and for days and days would pick it up in disbelief and hold it to my chest like a talisman. And so it started, the strength that comes from finding those like you. The words that used to frighten me, make my skin crawl, like gender and hermaphrodite, roll off my tongue easier now. They are beginning to belong to me. I will never find the words of my six-year old self, and that is fitting. Today I have the reasoned and educated voice of a grown woman who knows harm when she sees it and is increasingly growing strong enough to name it and try to stop it. Saying this does not mean I am always brave, because I'm not. Speaking out as an intersexual, as a hermaphrodite, I go forward, but I also still retreat to protect myself. At one moment I may tell a friend my story, talk knowledgeably about it on the phone with a stranger. But then the subject comes up in a room full of people, and I speak in generalities, as if it were something that happens to other people. And I feel that silence between my legs, the place that sets me and my past apart from most other women. But I'm kind to myself when I can't quite tell the whole truth, as all intersexuals should be. We have lifetimes of shame to overcome and, for most of us, this has been a secret that we have guarded with our lives and at great expense. Coming out as a hermaphrodite has its own precious timing. You can't peel the chrysalis off a butterfly and expect it to survive any more than we can speak out, or even face our own truth, before we are ready. If you are intersexed, listen to your heart--slowly you will emerge. It takes commitment and courage, it is frightening, but not nearly as frightening as that monster you created all those years out of your own sweet body. As you tell your story, and tell it again and again, a sort of transformation takes place. You start to speak for all intersex people who have ever lived and are yet to be born. Your intensely personal story drops into the background, and what comes forward is your story as myth, as a kind of transcendent truth. Try to love yourself enough to free your hermaphroditic voice, so we can all claim our lives, and the bodies we deserve to celebrate.

Growing up in the Surgical Maelstrom

__Jeff McClintock__ I'm now forty, and I've done a lot of healing. I am a licensed therapist, and I've used my experience--of being made to suffer unnecessarily by treatment for being intersexual--to make patient advocacy an important aspect of my work. I've healed a great deal through my involvement with the cancer community, where I was able to help people avoid unnecessary medical interventions. And I have studied sex and sexuality, which has been an important element in coming to a place where I can help others, rather than feeling like I was the only one in the world. It also helped me to realize that I could have successful relationships, including sexual relations. A lot of the defeat and depression that I felt growing up left me when I realized that doctors and parents were wrong. They believed I could not be happy without normal genitals. When I understood that wasn't true, my life completely changed. It was my mother's job to shuttle me back and forth to the hospital. I've had sixteen surgeries on my genitals, and they performed ten operations by age ten, pretty regularly once a year. It's pretty hard on a father if his son is sexually different, and it's still not easy for my father to discuss. It was hard on my mother, a typical fifties mom who didn't work. She was the one who had to deal with these teams of high-powered doctors all the time. She's told me what it was like when I was born-- the doctor didn't say anything, she looked around and saw the two nurses look down, avoiding eye contact with her. My parents weren't allowed to see me until the doctors had performed lots of tests, and had made up their minds to assign me as male. My childhood was filled with pain, surgery, skin grafts, and isolation. I remember when school vacation came, the other kids went somewhere fun. I went to the hospital during vacation, so I wouldn't miss too much school. When vacation was over, I would return to school, often not yet healed from the latest surgery. Sometimes I went back to school with tubes coming out of me, and stitches and scars, and I couldn't walk well. They made arrangements for me to use the teacher's rest room. I have no idea what they told the teachers. I didn't know any other children who were like me. I asked doctors questions all the time, but they would never tell me anything except to be careful and don't complain. They never told me there were any other children like me. Other children went on vacation; I went to the hospital. Children, of course, are quick to pick up on difference, and they were very cruel to me. I felt like a freak, an embarrassment and a burden to my family. But I got the message that I had to pretend everything was OK. The privacy of my hell was something that I had to deal with on my own, and I was very withdrawn and depressed. By the time I was a teenager, I was just hopeless, suicidal. I thought that was a good way out. I let out a little bit of what was going on with me to a friend's mother who was a psychotherapist. She got me in to see someone who evaluated me and saw that I was seriously suicidal. Early on I had gotten very, very strong warnings not to let other children see me with my clothes off, and particularly not to let them see my genitals. Of course, it was pretty easy for the other kids to pick up on the fact that for years I didn't use the kids' bathroom, or that I couldn't walk well when we came back from vacations. I was lucky I didn't have to expose my genitals to the other children in elementary school. By junior high, the psychiatrist helped make it possible for me to participate in mandatory gym classes, but not have to shower with other boys. They would have had a great deal of trouble making sense of or understanding what they would have seen. The doctors insist that you can't let a child go to school with ambiguous genitals, but the genitals they created were certainly strange-looking. Each year they performed surgery on me, and I watched and felt how rapidly the surgery would break down each time. They couldn't have missed it, either --there's no reason for some of the work that they did on me outside of arrogance or incompetence. I spent many years in surgery whose purpose was to make me pee at the end of my penis. If they had just left my urinary meatus [pee-hole] where it was, at the base of my penis right by the scrotum, I could have avoided at least twelve of those surgeries. And it's not just my genitals. They would take large pieces of tissue from other parts of my body to try to create a tube of skin for me to pee through, and those areas are scarred as well. The tube that most men pee through is not made of skin, it's made of a special kind of tissue that can handle contact with urine, and be continuously moist and warm without breaking down or becoming infected. The tubes that they made for me out of skin from other parts of my body broke down over and over, and I regularly get bladder infections. And I still have to sit to pee. I have never been without fistulae [holes in the penis where the surgery has broken down], and I've had the entire tube replaced twice, with large skin grafts. If they had just let me pee sitting down, neither I nor my family would have had to suffer all of that--the expense, the pain, the repeated surgeries, the drugs, the repeated tissue breakdowns and urine leaks. It would have been just fine to have a penis that peed out of the bottom instead of the top, and didn't have the feeling damaged. The promise that you will be able to pee standing up is just plain false, especially when the urinary meatus is at the bottom of the penis. Such a large skin graft can't heal with the blood supply that is available in the genitals. I believe they know that, but it seems that genital appearance and the promise of normalcy are more important to young parents than a clear-headed acceptance of reality.

Hermaphrodites with Attitude Take to the Streets

__Max Beck__ In late October of 1996, Hermaphrodites with Attitude took to the streets, in the first public demonstration by intersexuals in modern history. On a glorious fall day, the like of which you can only find in New England, under a crackling, cloudless sky, twenty-odd protesters joined forces to picket the Annual Meeting of the American Academy of Pediatricians in Boston (see cover photo __--Ed.__). Deeply aware of the historical and personal significance of the action, and--correctly--surmising that a notebook diary would not be practical on such a whirlwind, windy week-end, I took a small hand-held tape recorder with me. What follows are excerpts from the resulting transcript. h3. October 24, 1996 2:45 PM, Atlanta's Hartsfield International Airport The trip has only just begun and I am already exhausted. Hot. Starving. Fifteen minutes until take-off. Every businessman boarding the plane looks like a pediatric endocrinologist, Boston-bound. Silly thought, testimony to what? My anxiety? My fear? My giddy anticipation? If these bespectacled, suit-and-tie sporting men were pediatricians, would they be flying coach on Continental, with a layover in Newark? I'm headed for Boston, for the Annual Meeting of the American Academy of Pediatricians (AAP). Tens of thousands of pediatricians. I'm not a pediatrician, though, nor am I a nurse; in fact, I barely managed to complete my B.A. I'm a manager of a technical laboratory. We don't work with children, and the AAP certainly didn't invite me, so why am I going? With the plane taxiing toward take-off, this is a lousy time to reassess. I'm going. I'm going because I am intersexed. I'm going because the doctors and nurses who treated me as an infant and a child and an adolescent, and those who continue to treat intersexed infants and children today, consider me "lost to follow- up." I was lost--that's part of the problem. Now, I'm back. h3. 9:02 PM: Boston's North End I'm comfortably ensconced in Alice's warehouse condo in Boston's North End, a renovated warehouse with a view of the city skyline, ceilings easily twenty feet high, exposed beams and brick, gorgeous tile floor. As I speak, my hostess is preparing an absolutely phenomenal meal. The aroma of roasted peppers permeates the entire space. Tomorrow, the work begins; my project this evening is to unwind and enjoy this wonderful meal. Easier said than done. I'm feeling excited, enervated, I feel very alive, something I don't feel very often, I feel very present and aware. It could be my exhaustion, it could be the Chardonnay. But I think, rather, that the excitement is anticipation about what we are about to do. Being here, finally being prepared to raise a voice, to be heard, to be seen, a vocal, out, proud hermaphrodite who is standing up to say, "Let's rethink this, this isn't working, we've been hurt, stop what you're doing, listen to us!" I'm really looking forward to meeting Morgan at the airport in the morning; it's always amazing to make eye contact with someone else who has been there. h3. October 25, 7:38 AM Boston Commons En route to my encounter with the AAP, walking the approximately two miles from my hostess' domicile to the Marriott Hotel at Copley Square, I pause in the Boston Commons to enjoy a park bench, to sip my Starbuck's decaf, and to watch a group of senior citizens performing Japanese swordsmanship on top of the hill beneath a monument to some forgotten general. The city is cool this morning, but clear, and it promises to be a beautiful weekend. That's good: we won't be rained out. I've got a stack of about ninety ISNA brochures in the bag at my side, crammed in the inside pocket of my leather jacket. If I want these pamphlets to get inside, I've got to get to the site of the Nurses' Panel at the Marriott before they close the doors. Then it's back out to the airport, to pick up Morgan. My feet are already killing me. h3. October 26, 9:15 AM: North End Morgan and I are sitting at our hostess' breakfast table, pulling our thoughts together. In a few minutes, we'll have to leave to pick up Riki at the airport. The logistics of pulling together an action are mind-boggling. There's no describing the thrill, though, of all that work, all those phone calls, all those miles. Riding a clattering subway on a Saturday morning, seated beside another living, breathing, laughing, swearing intersexual, hugging near-strangers at unfamiliar airports, then riding back, together, defiant, determined, organized, to the heart of so much of our pain, so much of our anger, so much of our need. We gathered in front of the huge Hynes Auditorium, pamphlets and leaflets in hand, and met the AAP attendees as they left the convention center for lunch. The next hour-and-a-half was a blur, as we positioned ourselves in strategic locations before the Hynes, held signs and "Hermaphrodites with Attitude" banner aloft, distributed our literature, engaged AAP members and passers-by in conversation and debate, spoke to microphones, to cameras. In all that time, I recorded only one fragment of a breathless sentence: h3. Saturday, 12:20 PM Outside the Hynes We've got all the exits covered, and it's an incredible, incredibly empowering experience. I remember the words I spoke to the TV camera, if only because I had scribbled a rough outline on the airplane, pirating mightily from Cheryl's press release. And because the moment was so salient, so real. Me, Max, bespectacled, with blisters on my feet and chapped lips, speaking out to untold numbers of invisible viewers (and a few bewildered pediatricians behind me.) When an intersex child is born, parents and caregivers are faced with what seems to be a terrible dilemma: here is an infant who does not fit what our society deems normal. Immediate medical intervention seems indicated, in order to spare the parents and the child the inevitable stigmatization associated with being different. Yet the infant is not facing a medical emergency; intersexuality is rarely if ever life-threatening. Rather, the psychosocial crisis of the parents and caregivers is medicalized. Intersexuality is assumed to be a birth defect which can be corrected, outgrown and forgotten. The experiences of members of the intersex support groups indicate that intersexuality cannot be fixed; an intersex infant grows up to be an intersex adult. This hasn't been explored, because intersex patients are almost invariably "lost to follow-up." The abstract of a talk that will be given at this very conference by a doctor who treats intersex infants concedes that "the psychological issues surrounding genital reconstruction are inadequately understood." Part of the problem is that we were lost to follow-up, and there were reasons for that. But we're here today to say we're back, we're no longer lost, and we'd like to offer some feedback. We're here to say that the treatment paradigm for "managing" intersexuals is in desperate, urgent need of re-examination. We're back to say that early surgical intervention leads to more than "just" physical scars and sexual dysfunction. We're back to say that the lack of education and counseling for intersexuals, our families and the community at large does not lead to a blissful, healthy, well-adjusted ignorance. Rather, it too often leads to a life-threatening shroud of silence, secrecy, and self-hatred. I'm here representing over one hundred fifty intersexals throughout North America. One hundred fifty intersexuals are saying: Please! Listen! You doctors, you pediatric endocrinologists and urologists treating intersexuals, you nurses interacting with intersexuals and their families, listen to us! We understand intersexuality, not because we have studied the medical literature--although many of us have--not because we have performed surgeries, but because we have been grappling with intersexuality every day of our lives. We're here to say that those who would have us believe that intersexuality is rare, cloud the issue by breaking us and separating us into narrow etiological categories which have little meaning in terms of our actual, lived experience. We're here so that other intersexuals can find us--for many of us, finding others like ourselves has been a lifealtering, even life-saving, experience. We're here to reach parents before their intersex child is born. We're here to elicit the help of other sympathetic professionals. We __can__ take a stand as openly intersex adults without being crushed by shame! And we did! h3. 7:20 PM: Boston's North End Goddess, this is so sweet, so liberating! I was so reluctant a week ago, having my Jesus-in-Gethsemane experience, reluctant to accept--not an onus or responsibility but--to accept who I am. And here's where the hard work really begins. I'm exhausted when I think of the road before us. But then, it's nothing like the road behind us. [AAP officials did not reply to a letter from ISNA, delivered several days before the convention, inviting them to talk with ISNA members before, during or after the convention. During the demonstration, a PR man came out to distribute an "American Academy of Pediatrics press release":/books/chrysalis/aap asserting that "from the viewpoint of emotional development" the age six weeks to fifteen months is the optimal time for genital surgery, and announced that while AAP officials would be happy to meet with members of the press privately, inside, they had no interest in meeting any Hermaphrodites with Attitude __--Ed.__] !/files/images/silence-762.jpg (Max Beck pickets American Academy of Pediatrics! *The Author (left) at AAP Demo, Boston, 26 October, 1996*

In Amerika They Call Us Hermaphrodites

__Angela Moreno__ bq. 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 __--Natalie Merchant__ (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. bq. See also Angela's "Letter to my physicians":/books/chrysalis/moreno_letter.

In Process

To: Derick@domain.net
From: cchase@isna.org (Cheryl Chase)
Subject: Re: Write for Chrysalis?
Cc:
Bcc:
X-Attachments:

Hi Derick,

What I would like you to write about is not just about the
surgery, but about what it has been like to be intersexed,
how you were treated and what it felt like (emotionally,
physically), and how you wish you had been treated.

best,

cheryl

From: Derick@domain.net
Date: Sat, 3 Aug 1996 14:37:35 -0400
To: cchase@isna.org
Subject: My Story

Cheryl..... is this what you are looking for?.... if you
want it changed, expanded, etc... please let me know.....

Regards

Derick

To: Derick@domain.net
Date: 6 Aug 1996
From: cchase@isna.org (Cheryl Chase)
Subject: Re: My Story

>Cheryl..... is this what you are looking for?.... if you
want it
>changed, expanded, etc... please let me know.....

Thank you!

If you could expand somewhat on what your life has been
like since then... what you wrote seems to end at about 18.
But it is now many years later; how did you fare, how did
you connect with your current partner, how has sex been for
you, and has your adult life been affected by your sexual
difference?

Did you ever learn to masturbate? Are you orgasmic? Do you
find pleasure in sex?

One of the goals of hypospadias surgery is to make you able
to pee standing up. How did you pee before the surgery?
After the surgery?

love,

cheryl

From: Derick@domain.net
Date: Tue, 13 Aug 1996 11:47:41 -0400
To: cchase@isna.org
Subject: Re: Article

Cheryl,

I am having a struggle trying to put into words my inner
feelings, emotions, etc. that you asked for as an addition
to the stuff I sent you. I think it's because its something
I've never consciously tried to do.. it's been repressed
for a long time. I've only known about ISNA for about a
month now... and I guess you could say that I am still in
the process of coming out......

Derick

Interview with Dr. Arika Aiert

__Kira Triea__ bq. We are pleased to be able to present this rare interview with the controversial researcher Dr. Arika Aiert, author of __Sex and Gender: An Epidemiological Perspective__. Interviewer Shelly Primrose from "Not Exactly Out" magazine spoke to Dr. Aiert recently at Dr. Aeirt's sparsely furnished home in Hampden, Maryland. *Interviewer*: What causes sex? *Dr. Aiert:* Well, soft pink lighting, a glass of wine, "If You Don't Know Me By Now" on the CD, and a nice butch friend who doesn't think I'm a Feminist Traitor because I wear dresses and heels. That usually does it. 'Course, that's just me. *Interviewer*: Oops... I meant what __determines__ sex? *Dr. Aiert:* Oh! Surgeons determine sex. *Interviewer*: In what way? *Dr. Aiert:* Well, let me try and explain it to you with an analogy. It's kind of like fishing. When a doctor "hooks a big one," so to speak, he keeps it as a good "viable" fish. But if he hooks a little one, he doesn't throw it back, he makes it into a girl fish. Surgeons feel that fish with small penises will be very unhappy, but if they are just girls, then it doesn't matter so everything will be OK. So, being a girl fish is not as great as being one of the "real guy fish," but it sure beats being such a miserable creature as a "guy fish with a little weeny." *Interviewer*: Let me get this right... *Dr. Aiert:* Ok, XX babies with clits that are "too big" have them removed. Doctors don't like large clits--they find them upsetting. XY babies with penises that are "too small" have them removed, too. Surgeons find them equally if not more upsetting. That way, everyone in the world will be walking around with either a nice manly penis, one that a surgeon would be proud to display, or they have nothing that even resembles a penis at all--but they have a vagina and will be able to make their boyfriends happy, so everything works out fine for everyone. Surgeons are quite proud of their vagina-making skills. But what we have in reality is a plague of mutilation, an epidemic. If these guys were doing this stuff to adults they'd have every cop in the nation looking for them. *Interviewer*: Er... "too big," "too small"? *Dr. Aiert:* Yes. Kind of a gray area, right? In fact, it's just one vast soupy Sargasso Sea of gray area with no land in sight, a sort of Primordial Plain of Murk and Confusion. [Dr. Aiert takes a "mini-maglight":http://www.maglite.com/productline.asp out of her shoulder holster, lets 3 cm. protrude from her fist.] *Dr. Aiert:* "Is this a penis or a clit?" *Interviewer*: "A penis." *Dr. Aiert:* "On a girl child, too?" *Interviewer*: "Er... um." Dr. Aiert "Exactly--er um" [Exposes 1 cm. of maglight] "How about this?" *Interviewer*: "For a boy or a girl?" *Dr. Aiert:* "Does it matter?" *Interviewer*: "Er ... um ..." *Dr. Aiert:* "Yes, more er-umming indeed. The answer is that we don't know what is "too big" or "too small" or how the child feels about it or how they are going to feel about it later. But surgeons are manly men of action who like to fix things and that's exactly what happens. Lots of things get fixed. *Interviewer*: Does this approach ever work? *Dr. Aiert:* Not one damn bit that we can ascertain! If it has, we have never had anyone come forward and tell us about it. What we do have is more and more people coming forward who are hopping mad and out for blood, or tragically damaged from having had body parts removed and altered as infants and teens, people who have spent their teenaged years as the subjects of medical experimentation, purposefully kept isolated from each other by the Medical Industrial Complex. It's not pretty. *Interviewer*: Why don't surgeons just talk to their ex-patients? *Dr. Aiert:* They are very busy. Plus, they are quite important and ex-patients may bring back troubling thoughts. In general, they seem to want to avoid any upsetting confrontations with patients who are potentially unstable. Also, they are cowards who do not seek or face the truth. *Interviewer*: Isn't that a bit harsh? *Dr. Aiert:* No, not at all. Harsh is having every bit of feeling tissue removed from your clitoral area at 18 months old area because it was "too big." Harsh is having vaginoplasty at 14 years old, then a week later being strapped down to a table with your legs apart and a speculum stuck in you so that a dozen people can take a look and comment. *Interviewer*: What is the solution, then? *Dr. Aiert:* Surgery and hormone therapy should only be consensual and informed. Kids know what sex they are if they are just left to work it out and feel loved and safe enough to talk to their parents about it. Intersexed children raised fairly neutrally could easily decide at puberty what sex they would be, or if they wanted to remain intersexed. Medical complications should be handled with love and honesty. Intersexed children are special, so they should be made to feel that way, instead of like freaks or worse. Actually, it is really so simple. *Interviewer*: What causes gender? *Dr. Aiert:* Clothes. Yes, gender is mainly brought about by clothes. If someone has a really confused wardrobe--strapless dresses, high heels, alongside a pinstripe power suit or lumberjack shirts, it's a sure sign that they may be confused about gender. Once you are one with your wardrobe, your gender worries are over. Another cause of gender are the sexual positions. Lots of sex has a "top" and a "bottom," so we have a male gender person on top and a female gender person on the bottom. It works out that way almost every time! Take lesbians, for instance, who can make love sideways to mutual satisfaction. With no top or bottom, there is no gender, and many lesbians are quite unconcerned about gender. It is my theory that if we all had sex, say, by hanging vertically and rubbing our interesting parts together, the whole gender thing would just sort of fade away. *Interviewer*: Where are you off to next? *Dr. Aiert:* Actually I'm beginning a new book on lesbian sexuality and I'm going down to Lynn's place to do some research. Care to join me?

Is Growing up in Silence Better Than Growing up Different?

__Morgan Holmes__ bq. In May, 1996, plastic surgeons at New York City's Mount Sinai Hospital held a symposium which included a half day on genital surgery for intersexed infants. ISNA offered to put on a "Patients' Panel" for the symposium. This offer was rejected. In spite of this, three ISNA members traveled to New York and presented their stories in a room adjacent to the surgeons' symposium. This is the talk given there by Morgan Holmes. The surgeons said afterwards that nothing ISNA members said had changed their minds about any aspect of their treatment of intersexed infants. I want, first and most importantly, to express my deep gratitude to our supporters, Dr. William Byne and Dr. Suzanne Kessler, who helped to make this talk possible. I also want to take the opportunity to thank ISNA president and founder Cheryl Chase, who opened the door for intersexed persons to come together and provide each other with a sense of belonging in the world. There are few moments in life that were as important as the one when I first spoke to Cheryl. I was twenty-four years old, and for seventeen years I had been keeping significant facts about myself hidden from everyone I knew--even from my most intimate partners. I was in the final stages of writing my master's thesis on the political and cultural demands being both met and reinforced in Western medicine's traditional mode of providing a surgical "miracle cure" for intersexed features. I had only just begun, because of Dr. Anne Fausto-Sterling's influential article "The Five Sexes," to tell people about my own history, but these were very "safe" people--my academic advisors, professionals who were used to dealing with topics about sexuality. But I still wasn't talking to my family about my past and I had certainly never spoken to another human being that I knew to be like me. I had grown up thinking that the reason they had cut my clitoris off when I was seven years old was that I was the only one in the world like me. I hadn't smoked since a terrible bout of the flu when I was twenty-two, but I smoked during that phone conversation. Suddenly my pain had a mirror image, and as much as I had known, in theory, that removing the erotogenic tissue of kids was at best an inadequate solution, I had never felt how right I was except through my own pain. Now I heard it in someone else, too. But more than that, I heard and felt the anger, which like mine, tried to understand why we had been forced to pay with an ounce of flesh for the failure of our parents and their friends and relations to love us unconditionally. Without meaning to sound arrogant, I would like to draw your attention to my intelligence; it is not a recent development in my life. I did not start out a fool. One of the few positive things my early childhood medical files attest to is the early indication of high intelligence and an ability to express myself with exceptional clarity. That intelligence was not respected. I remember quite clearly what my body was like before the surgery performed in 1974 by Dr. Robert Jeffs at The Hospital for Sick Children. I have a tactile memory of how the clitoris felt between my fingers. I have absolutely no recollection of it causing me either pain or consternation. My pediatrician, however, told my father that my clitoris, because it could become erect, would make it uncomfortable to wear anything with an inseam, and he told my father that surgery would relieve the increasing trauma I was having about my body. Well, by the physician's logic, all penises should be removed at birth, and if my father had thought about it, he would have known that erections are not so much of an interference in his life that he would choose to have his penis removed. Furthermore, if anyone had thought to ask me why I was feeling traumatized, I would have been able to tell them that the reason I didn't want to see the doctor was that I was tired of being trotted out for pelvic exams, of being referred from one doctor to the next as a fine example of how they could detect such an interesting case. But I didn't tell--I was taught that children are to be seen and not heard and that you do not give an opinion unless you have been asked. Since then, I have decided that my opinion should be heard, regardless of whether or not it has been solicited. As a premature baby, I had spent my whole life being examined by doctors who were, no doubt, very interested to see how the progesterones my mother was given would affect my body. And I had come to an age where I could protest, or at least cry when yet another man would want to pry my legs apart and stick his fingers up my vagina. What I am saying is that my medical "care-givers" failed to respect my autonomy or my intelligence when they assumed that because I was a child they could do whatever they wanted as long as my father provided his consent. And when I began to balk, instead of questioning their own treatment of me, they blamed my body and they cut it up. They told my father I would be perfectly normal. They told my father that my problems would be solved. They told my father I would grow up to have a normal sexuality. Perhaps they didn't realize it, but all these things were lies. Before the surgery, I never gave a thought to my body. You may say that I just don't remember, but I have an exceptional memory. I remember. I know that nobody told me what I was going into the hospital for; they only told me that I might have a catheter. Nobody asked me how I felt, nobody explained to me what made me so interesting. And they certainly didn't tell me they were going to amputate my clitoris. Indeed, it's not even what they told my father. No, they gave it a much more benign name: "clitoral recession." And they didn't explain to him that it didn't mean that they would just be "backing it up a little," which, until a year ago is what he thought had been done. But those were the days before you had to get "informed consent"--all you had to get was consent. So I went into the hospital and I waited for six days while they buccal smeared me for the umpteenth time, and they did blood tests and urine samples and they punched a hole of skin out of my arm. Now that was a very painful procedure. I remember that the man who did it told me that he didn't have very many friends. And he also told me that they were going to grow some of my skin in a dish so that if I needed some skin later they would have it. Another lie. The skin sample was used for my karyotype analysis. And I had no idea what he meant about me needing it later. I remember thinking to myself, "For what?" But children don't get to ask the questions, or if we do, nobody thinks we are entitled to true answers. When they were prepping me for surgery I still had no idea what was going to be done. When I woke up I was covered in orange paint from my navel to my knees on my inner thighs. And hurt! Very few people in this room have ever had their genitals sliced off. You can't imagine how much it hurts to pee afterwards. And it hurts for a long time. However, nobody thought about my pain except to assume there wouldn't be any: obviously the thing about the inseam was considered all fixed because my "Welcome Home" photos show me dressed in yellow wool pants--the early 1970s kind with the inseam that always seemed to cut too high. It wasn't until the iodine-paint was gone and the hurt subsided that I realized that I no longer had what I had had before. And that was the first time I realized I had been so ugly that they had had to change me. I remember clearly, standing in the bathroom at school, having just suffered through a horrible stinging pee, wanting to ask my friend Ijoma Ross if this had ever been done to her but thinking to myself that I shouldn't ask her. It occurred to me that my classmates didn't disappear for two weeks and come back to school unable to sit still because the inseam of their pants was rubbing against a fresh scar that burned and itched. I never spoke to anyone about it. Yet it's amazing how many of my father's friends and relations seem to know all about it. I may not have been able to talk, but obviously other people were not so affected. Years went by. I was a young adolescent. I learned in Health Ed class that a clitoris is a little button about the size of a pea. I didn't think I had one. I tried to find it, but I couldn't find anything like that. At the apex of my labia, I found only the apex... and it seemed no different from the rest of the tissue there, soft, indistinct. I began to feel like a real freak. The thought of having anyone come near me terrified me. I was afraid that people would find me repulsive and so, when my peers were going on dates, to dances, having sex, being intimate with others, I removed myself. At my first visit to the gynecologist, I was told I had venereal warts--pretty interesting considering that I was terrified to even hold hands with anyone--and the gynecologist refused to believe that I had never been sexually active. I was referred to a pediatric gynecologist at Sick Children's Hospital. I explained to the doctor that I couldn't possibly have warts and I told her why I wouldn't let anyone near me. She assured me that I wasn't a freak, that the surgeons had done a "very nice job" and that I would be sexually normal when I grew up. What she didn't realize was that I was already growing up, but I was far from sexually normal. It is not normal for a 15-year-old girl to be afraid of relationships because she is afraid of being "discovered" as a fake. A few years later, I made a decision not to have a relationship with a woman. It was a decision I made several times. By then I was having sex with men, but it wasn't "normal." I was having sex with men instead of with women because I realized that if the male surgeons had decided what a "normal vulva" looked like, then I could probably fool these boys with what I had come to call my "designer cunt." But the women. Well, I didn't think they'd be fooled. I thought they would know that I had been "fixed," that I had a "fake one." This was the sexual normalcy they promised my father. But, hey, I was sleeping with men--that is all it takes to be normal, so I guess they were right. Never mind that I didn't enjoy it. Never mind that I did it only because I was afraid that the women I loved wouldn't love me back. Never mind that I wasted my time in fear of being found out. Skip ahead a few years of very bad sex and living in a closet. Go to university, read the Herculine Barbin story. I was twenty-two years old. I was living with the man I am now married to. I sat him down and told him that this book we were reading had a lot to do with me. He didn't run away, he told me I looked perfectly normal to him, but I couldn't shake the feeling that I was a monster. Skip ahead another two years. I was twenty-four, and I decided that I was going to prove my place as a "true" woman by having a child. Shortly before my twenty-fifth birthday, my son was born. And then it all unraveled. Anne Fausto-Sterling's article "The Five Sexes" came out, and I realized that Herculine Barbin and I hadn't been the only two monsters in history. I did some quick arithmetic and realized that there were thousands of people like me and I decided I was going to find them. I realized that I had never been a monster. I mourned for the lost potential. I am still mourning for what I could have done with my body but can't. I still mourn for all the years I spent in silence, for all the loves I denied myself, and for the ways of loving that were physically, literally, removed from me. What I know now is that I was fine until I was sent to that surgery room. I know that I never doubted myself before then. And if you think that is because I was too young to be sexual, think again; I've already told you that I remember how that clitoris felt between my fingers. My father, pressured by several medical experts, "consented" to a surgery that promised to make me sexually normal. What it actually did was change a perfectly healthy seven-year old girl into a woman who feared her own body and her past and who hated herself for being different. The cure taught me how to hate and fear. But that is what perfectly normal sexuality is all about--the hate and fear that is heterosexism and homophobia. And I ate it for fourteen years and vomited it up for another three after that. For me the issue is not, primarily, whether or not we can develop a surgery that will not damage orgasmic function--of course, if we are going to perform phalloclit modifications they should not impede the function of that organ. But for me, the primary issue is that parents and surgeons are not entitled to attempt to dictate what sexual normalcy is. It is clear that the promise made to my father was not that I would be sexually happy--it was that I would be normal. I hope you will see that forcing a body to look typical is not the same as making a person feel normal and, in fact, as I believe my case shows, it may actually produce the opposite effect, making a person feel completely abnormal. It is not my personal opinion that genital surgeries should never be carried out on intersexed persons. It is my position that any surgery whose justification is cosmetic and/or the promise of sexual normalcy should be withheld until the person has reached an age to make that decision for him/herself. Parents and doctors must give up ownership of the sexual future of minors. Children are no longer the property of their parents; we are not chattel. Our sexualities do not belong to the medical profession. It may be that if surgery had not happened when I was young I would have still chosen it. It is equally possible that I would have chosen to keep my big clitoris; the women I know who escaped surgery are quite grateful to have their big clits. That decision should have been mine to make. Without retaining that decision as my personal right, all other aspects of my sexual health have been severely limited. The medical profession can't give back what was taken from me. But it can listen to me. I was asked to address you today from my heart, at an informal level, not primarily as an academic, but as a person who has lived through the nightmare of early childhood surgery. But I want to remind my audience that I am an academic, that I do hold a graduate degree in this area of research, and that I am a doctoral candidate specializing in this field. As a medical anthropologist with an interdisciplinary viewing lens incorporating bioethics, I have a growing body of data that indicates that early childhood surgeries cannot protect children from suicidal feelings or attempts and, in fact, they may instigate them. And my data show that regardless of the measured nerve response of "corrected" genitalia, promises of sexual normalcy are not being met. The promise is not for the medical profession to make. "Sexual normalcy" is up to each individual to create for him/herself. I believe the medical profession really does want our lives to be better. Please listen to us as we tell you how to meet that goal.

Letter to My Physicians

bq. The following is a letter which ISNA member Angela Moreno recently sent to two pediatric endocrinologists, women who presided over her treatment for intersexuality in 1985 (See "In Amerika They Call us Hermaphrodites":/books/chrysalis/moreno). We have not used the names of the women, because our aim is to open a dialog, not to publicly embarrass individual physicians. __--Ed.__ August 10, 1996 Doctors W and S, I wonder how many of your intersex patients ever contact you again in adulthood. I imagine--given the enormous distrust of the medical profession which many of us develop--that most are "lost to follow-up." You (and your profession's misguided treatment protocol) can never hope to return to me what you have taken, but you can listen to me. As you admitted to me, Dr. W, adult intersexual voices are very rare. My willingness to speak is relatively unique; I urge you to listen. In fact, I am writing with the hope of initiating a dialogue with clinicians like yourselves. If I had not persisted in obtaining my medical records, I might never have known the specifics of my intersex status. I've only managed to get fifteen pages of my records from Children's Memorial Hospital, but I have managed to glean my karyotype and other diagnosing information. I am shocked and angered to realize that you have lied to me, convinced my parents to lie to me, and that you never intended to disclose my diagnosis to me--the patient. I wonder how you thought that deceiving me might have been therapeutic or even ethical. I wonder if you thought so little of me as to believe that I would never discover the truth on my own. I am enclosing some literature from the Intersex Society of North America, a peer support and advocacy group. I hope you will thoughtfully consider these materials. Let me emphasize that my intention in writing is to open a dialogue. I hope, someday, to sit face to face with both of you and discuss the particulars of my case and treatment of intersex conditions more generally. This is very important to me, but I also believe this is an opportunity which you must not dismiss. Your willingness to listen can only increase your understanding of intersexuality from the patient's perspective. I encourage you to contact me by phone, e-mail, or post. I make occasional weekend trips to your city and am usually able to arrive on Friday or stay through Monday. I hope that we can arrange to meet soon. If I don't receive a response to this letter within the month, I will contact both of you to pursue the possibility of our meeting, but I sincerely hope that you will feel strongly enough to contact me on your own. I look forward to hearing from you soon. Sincerely, Angela Moreno

Meanings of Gender Variability Constructs of Sex and Gender

||*Pre-Surgical Genitals* |*Intervention* |*Post-Surgical Genitals*| |*Medical*|"deformed"|"create"|"corrected"| |*Alternative*|"intact"|"destroyed"|"damaged"|

Your genitals are inferior (less functional, ugly). We pity you and suggest you have corrective/cosmetic surgery.
Your genitals are superior (more versatile, attractive). We envy yours and want ones like them.
Your genitals are just another body-part that varies from person to person, like noses and ears, and it doesn't matter what they look like as long as they function well. We don't think that much about your genitals or our own.
Your genitals signify something about your parents. They have misbehaved or are genetically unsuitable. They are embarrassed by you and your genitals.