A Look at Intersexuality

Elaine Cook

November 1, 2002

Introduction

This paper takes a look at intersexuality, how it is treated, and the effect of that treatment on the people involved. It starts with an explanation of intersexuality along with some of its causes. It then describes the medical treatment of intersex, the reactions of intersexuals to the medical treatment they received, and some comments on medical attitudes and actions. It notes some cultural implications and finishes with some counseling considerations. The purpose is to provide a background for counseling people who are intersexed.

What is Intersexuality?

Alice Dreger explains that "'hermaphroditism' and 'intersex' are blanket terms used to denote a variety of congenital conditions in which a person has neither the standard male nor the standard female anatomy. Of course, what counts as 'standard' male or female is open to interpretation. How big does a 'clitoris' have to be before it is 'non-standard' - and is size all you should count?" (Dreger, 1999 p. 5)

Although this condition is uncommon, there are still significant numbers of people who were born intersexed. Kenneth Kipnis and Milton Diamond inform us that "It is conservatively estimated that one in 2,000 newborns are found to have ambiguous external genitalia." (Kipnis and Diamond, p. 178) There are also higher estimates. Kessler mentions that, based on an analysis of the medical literature, Anne Fausto-Sterling concluded that as many as 2% of live births may involve intersexuality. (Kessler, p. 135) Sherri Groveman notes that "The population of Jews in the world is no larger than the population of intersex persons." (Groveman, p. 24)

Ambiguity is often determined by the size of the phallus (a term used either for the penis or the clitoris). Suzanne Kessler states that, "In general, medical standards do not allow clitorises larger than .9 centimeter (about 3/8 of an inch)." She includes a chart indicating that a penis needs to be at least 2.5 centimeters to be medically acceptable. (Kessler, p. 43) I'll discuss what happens to infants in the unacceptable range in the section on medical treatment.

A distinction is sometimes made between a "true hermaphrodite" and a "pseudohermaphrodite." Bruce Wilson and William Reiner define true hermaphrodites "as those people with both ovarian and testicular tissue," (Wilson and Reiner, p. 122) but this condition "accounts for fewer than 5 per cent of all cases of ambiguous genitals." (Kessler, p. 14)

There are a number of different causes of intersexuality, which include:

  • Congenital adrenal hyperplasia (CAH),
    a condition "which causes some XX fetuses to develop male-like external genitalia. Their adrenal glands produce large amount of androgens, virilizing the fetus." (Kipnis and Diamond, p. 184)
  • Androgen insensitivity syndrome (AIS),
    a condition which "causes XY fetuses to develop female external genitalia. Their testes produce androgens, but, because of a cellular abnormality that partially or complete inhibits response to the hormone, gestational development proceeds toward a female external morphology." (Kipnis and Diamond, p. 184)
  • Klinefelter's syndrome
    is a condition where there is one or more extra X chromosomes (e.g., XXY). (Cameron, p. 91; Wilson and Reiner p. 123)
  • Kallman's syndrome,
    which is "a condition where the hypothalamus does not stimulate the pituitary to release the necessary hormones to stimulate testicular growth." (Hawbecker, p. 111)
  • Turner's syndrome,
    in which a girl is missing part or all of her second X chromosome. (Wilson and Reiner, p. 123)
  • Hypospadias,
    which occurs "in an apparently male child in whom the urethral meatus (exit of the urethra) opens somewhere other than at the tip of the penis, either on the underneath of the penis or at its base." (Wilson and Reiner, p. 123)
  • 5-alpha reductase (5-AR)
    deficiency prevents testosterone from being converted to the more potent dihydrotestosterone during prenatal development. "In spite of being genetically and gonadally male, [the individuals with 5-AR] are born looking fairly feminine in external genital appearance." (Wilson and Reiner, p. 122)
  • Cloacal exstrophy,
    a condition in which a boy has "normal XY chromosomes, but may lack a penis; however, testes are usually present." (Schober, p. 165)

The Medical Treatment of Intersexuality

Kessler states that the medical profession conceptualizes intersexuality as a correctable birth defect. Endocrinologists are concerned with "its marking of a more serious medical disorder ... For the surgeon, the ambiguity signals an opportunity to fashion the inappropriate into the appropriate." (Kessler, p. 5)

Dreger points out that "people born intersexed are now typically subject as children to 'normalizing' surgery and hormone treatments." "All of the professional energy is aimed at producing a physically 'right' girl or boy who, presumably, the parents will be able to raise in an unambiguous way." (Dreger, 1999, p. 12)

Kessler mentions that "there are least least three categories of distinguishable genital surgery:

  1. "that which is lifesaving - for example, a urethra is rerouted so that the infant can pass urine out of his or her body.
  2. "that which improves the quality of life - for example, the urethral opening is redesigned so that a child can eventually urinate without spraying urine on the toilet seat; and
  3. "that which is aesthetic - for example, the small penis is augmented so that the (eventual) man will feel that he looks more manly."

(Kessler, p. 34) She makes these distinctions because the medial profession does not seem to make them in the case of intersexed infants, and they are important in considering treatment.

Robert Crouch points out that in the view that dominates medical practice today, "first, there is a clear emphasis placed upon the future gender rather than the sex of the child; and, second, there is a more explicit awareness that the medical intervention sets out not to discover but to create a child of a certain gender." (Crouch, p. 30-31) Based on deeply held principles promulgated by John Money of Johns Hopkins and his colleagues in the 1950's, "First, individuals are hypothesized to be psychosexually neutral at birth and thought to remain so for about two years; and second, one's healthy psychosexual development is presumed to depend on the 'normal' appearance of one's genitals." (Crouch, p. 31) "Physicians, therefore, have proceeded as if the sex (hence future gender) of the intersexed child can be selected regardless of the child's genetic complement, and have based this sex and gender selection upon the possible future appearance of the child's genitalia." "The medical team selects a gender for the child and, in so doing, explicitly endorses the view that the perception of the child's genitals is more influential than anything else in terms of gender identity formation." (Crouch, p. 31)

Androgen therapy and surgery may be used to create an "adequate" and "functional" penis if they decide to create a boy, or they may reduce the size of the clitoris and possibly create a vagina and labia through surgery as well as recommending hormonal therapy for a girl.

Clitoroplasty (surgery on the clitoris) may be a complete amputation of the clitoris, or one of a variety of "clitoral reductions." In one procedure, "the elongated shaft is excised and the reserved glans grafted onto the stump." In a recent technique, "a cut is made through the midline of the clitoris, and outer tissue is spread back to form the labia. The clitoris is sutured to the pubic bone, and it retains its blood supply and nerve function." In yet another procedure called "clitoral recession," the apparent size of the enlarged clitoris is reduced by "'burying the erectile shaft' under a fold of skin so that only the glans is visible." (Kessler, p. 47-48)

Vaginoplasty (surgery on the vagina) is often done to create or enlarge the vagina. Other times the vagina is extended by "pressure dilation," which "involves the insertion of a solid plastic dilator into the vagina for fifteen minutes a day twice a day for months or years." (Kessler, p. 49)

The emphasis in the medical profession seems to be on the appearance of the genitals. Kessler comments that "Physicians do not question whether a large clitoris ill prepares a girl for the female role. The emphasis is more on its ugliness. (Kessler, p. 37) However, "The penis needs to be large enough to support masculinity (in the eyes of the parents and the child). If it really is a penis, it will push the child towards the 'male' gender role, even ... if the child is a girl." (Kessler, p. 38)

Kessler comments that in the prevailing medical viewpoint, "Parenting a female with clitoral insensitivity and vaginal complications is seen as preferable to parenting a female with a larger-than-typical clitoris and a smaller-than-typical vagina. Parenting a male with a scarred and insensitive penis is seen as preferable to parenting a male with a normally functional (but small) one or one that does not permit a direct urinary stream. Nowhere in the medical literature is there an acknowledgement that these are value judgements." (Kessler, p. 75-76)

Wilson and Reiner also note that "The evaluation of results of the newer techniques is still subjective and done by the surgeon, typically focusing on short-term cosmetic appearance." (Wilson and Reiner, p. 126)

Dreger states that "Cosmetic surgeries are performed without the subject's consent because of adults' discomfort with intersexuality." (Dreger, p. 17) Crouch notes that "A larger than typical clitoris has been variously described as 'a disfiguring and embarrassing phallic structure,' an 'ungainly masculine enlargement,' a 'button of unsightly tissue,' an 'anatomical derangement,' and an 'embarrassing or offensive' phallic enlargement. These descriptions reveal not strictly medical concerns, but, rather, social and aesthetic ones; yet the intersexed are surgically treated with an urgency that bespeaks an underlying medical pathology toward which the surgery is directed as treatment." (Crouch, p. 32-33).

Kipnis and Diamond agree with Crouch about the importance of John Money's work. They say it was "decisive in establishing what quickly became the standard of practice in pediatrics." (Kipnis and Diamond, p. 178) They describe the landmark study in which one of a pair of identical twin boys was turned into a girl after his penis was accidentally destroyed during a medically necessary circumcision. John became Joan, and was to be raised as a normal girl. This "offered an unparalleled opportunity to confirm the theory of sexual neutrality at birth. (Kipnis and Diamond, p. 176) The twins were evaluated regularly at Hopkins, and Money reported remarkable success, claiming that she [Joan] was clearly a little girl and her behavior contrasted with that of her brother. (Kipnis and Diamond, p. 176) However, the last update on Joan by Money appeared in 1978, when Joan was pre-pubertal. Subsequent research by others (including Milton Diamond) showed that this story was distorted. "The child never was and never became a normal girl. Now in his thirties, having married a woman with three children, John lives as a man ... John's twin brother has said: 'When I say there was nothing feminine about Joan, I mean there was nothing feminine. She talked about guy things... Despite the absence of a penis, Joan often stood to urinate. Other girls at school eventually barred her from their bathroom, threatening to kill her if she came in.'" Joan disliked the effect of the estrogens she was placed on at age 12, and told her endocrinologist she suspected she was a boy. "At the conclusion of her final visit [to Johns Hopkins] in 1978, Joan told her mother she would kill herself if she had to go again." (Kipnis and Diamond, p. 179) I have to wonder how John Money managed to overlook this problem in his evaluation of Joan, and why he allowed this misinformation to stand until others discovered the truth almost two decades later.

Another aspect in the medical treatment of intersex is the withholding of information. "Since the overarching rule of this system is to 'avoid psychological confusion about the patient's gender identity,' doctors often do not tell intersexuals and their parents all that the doctors know, lest information about intersexuality complicate the family's understanding of gender." (Dreger, 1999, p. 12)

Reactions of Intersexuals to Medical Treatment

Physicians appear to be trying to help intersexed individuals have better lives. Sharon Preves comments that John "Money's and others' research into this area emphasizes the psychological need to medically clarify the sex of intersexed infants at birth to alleviate the social stigma that could potentially arise from sexual ambiguity." (Preves, p. 53) So how do the people who were subjected to medical intervention feel about it? Here are some of their comments.

Sherri Groveman, who has AIS, was given a complete gonadectomy as an infant, although she points out that her testes could have remained safely intact until puberty. (Groveman, p. 24). She further comments, "I spend my adolescence filled with shame, though I was never told the true details of my diagnosis. My trauma was needlessly compounded by my doctor's stony silence while examining me, and his asking me to lie naked on an examining table so that teams of interns and residents could inspect my genitals." (Groveman, p. 26)

Groveman sees silence about the condition as a serious problem. "Doctors continue to debate the patient's right to know the truth, seemingly oblivious to the idea that they do not 'own' the patient's medical information. This conspiracy of silence stems from the same root as the continuing protocol to surgically alter intersex infants' anatomies - an inability to see intersex as anything other than shameful and pathologic. This, in turn, is communicated to the parents, whom I believe would be far less traumatized by the reality of intersex if they weren't receiving such negative cues from doctors." (Grovement, p. 26)

Preves did indepth interviews with 41 adults who were born intersexed. She comments that "Throughout the interviews, individuals conveyed that being encouraged to keep silent about their differences and surgical alterations only served to enforce feelings of isolation, stigma, and shame - the very feelings that such procedures are attempting to alleviate... Of those who had recurring medical examinations or treatments to clarify sex assignment, I found the feelings of shame to be most intense. These individuals spoke of feeling 'monstrous, Other, and freakish.'" However, when they gained information and could talk about it with others, and found others who were similar, "they related feelings of pride about their difference and their identities." (Preves, p. 55-56). In addition, "According to the participants, lacking information about their bodies and medical histories was far more difficult than actually knowing the truth." (Preves, p. 37) One of her participants commented, "If they would do this to me, it must be that I'm unacceptable as I am. The point is the emotional damage you do by telling someone that 'You're so fucking ugly that we couldn't send you home to your parents the way you were.'" (Preves, p. 58)

Others comment on the isolation they felt, and how important it was to break out of it. One woman talks about how she felt when she met other intersexuals: "You can't imagine what it was like! What a relief to find people and not to be alone! It was just incredible." Another woman found it incredibly freeing to find a whole community where she belonged. (Preves, p. 61)

Preves concludes "that the very means intended to normalize are experienced as degrading and shaming." (Preves, p. 62)

Martha Coventry was given a clitorectomy when she was six. When she was told she was going to the hospital for an operation, "I remember something rushing out of me then, like wind through a closing door - all my power escaping. No explanation was given for the surgery, and when the surgeon cut out most of my half-inch clitoris, it was as if he cut out my tongue. I could not cry out to save myself, and that stifled scream wedged in my throat, blocking my voice." (Coventry, p. 71) Her parents did not answer her questions about her surgery. "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 answers to your questions is to have your heart and soul relentlessly undermined." Even after she had had children she was afraid of what had been done to her. "I had never been sure of my sexual identity and was still afraid that what the surgeon cut off was a penis." (Coventry, p. 72)

Howard Devore has had 16 surgeries on his genitals. He comments that "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 that I could not be happy without normal genitals. When I understood that wasn't true, my life completely changed." (Devore, p. 79). His surgery was not effective, and he feels that "there's no reason for some of the work that they did on me outside of arrogance or incompetence." (Devore, p. 80)

When she was 12, Angela Moreno was told that her ovaries were going to be removed. "They didn't mention the part where they were going to slice off my clitoris. All of it." She notes that "my doctors made a traumatizing hospitalization even more traumatizing by putting me on show for parades of earnest young residents... I know now from my parents that the pediatric endocrinologists repeatedly advised them that I did not need to know the truth." She has spent "the last 10 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." She estimates that surgery reduced her sexual responsiveness by a factor of 5 to 10. She concludes her article by saying, "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." (Moreno, p. 137-139)

Cheryl Chase, herself an intersexual, points out that "The primary source of harm described by former patients is not surgery per se, but the underlying attitude that intersexuality is so shameful that it must be erased before the child can have any say in what will be done to his or her body." (Chase, p. 147)

There is sometimes considerable bitterness expressed by the victims of medical treatment. Kiira Triea states that her experience at the Psychohormonal Research Unit at Johns Hopkins "leads me to believe that a need to express and preserve androcentric control is at the root of the medical-industrial complex's fascination with my (our) genitals." (Triea, p. 141) In writing about John Money and Johns Hopkins, she says, "Their world is the hard, sex-dipoled landscape of power and domination, peopled with those fortunate denizens who are able to fuck others and those who are equipped only to be fucked." (Triea, p. 142) About her surgery (performed when she was 14), she says, "I wish I'd been consulted or at least informed [of exactly what they were going to do]. Of course, why would I need to be informed? The objective was to make the hermaphrodite fuckable." (Triea, p. 143)

Intersexed individuals who escaped gender assignment surgery seem glad about that, as the following stories show.

Hale Hawbecker, whose parents refused to allow the doctors to turn him into a girl because of his small genitals, states that "The only real angst that I have suffered over my genitals has been at the hands of medical professionals. Whenever I went in for examinations as a child and later when I started hormonal treatment, doctors seemed to be perversely fascinated with my genitalia... My penis, although small... does everything that I want it to do... I am just so lucky that I was able to keep it." (Hawbecker, p. 112)

Dreger mentions a woman in her early twenties who had been to one of Dreger's presentations on intersexuality. The woman told her she had a very large clitoris, and said she "had always had a feeling she had better hide her unusual anatomy from doctors." After learning about surgery on intersex children, she was glad she had. "She told me she never really thought about how odd it might be that she uses her clitoris to penetrate her partner's vagina." (Dreger, 1999, p. 13)

Kessler mentions other cases: "Fausto-Sterling and Laurent found seventy cases in the medical literature (post-1950) of people who grew up with obviously unusual genitals yet, with few exceptions, were able to adjust to those genitals and develop into functioning adults." (Kessler, p. 155)

Do these stories mean that no intersexuals are happy that they were operated on as children? Many physicians believe their adult patients are happy with the treatment they received. Dreger notes, "Some of them might be - though for four years now I've been asking doctors to give me evidence of one such happy adult patient, and I have yet to be provided any evidence." (Dreger, 2001, p. 3)

Comments on Medical Attitudes and Actions

The medical establishment seems to be unwilling to look at the results of surgery as indicated by the (dis)satisfaction of the subjects. In a section on evaluating genital surgery, Kessler writes that "There are no meta-analyses from within the medical community on levels of success." (Kessler, p. 53) Furthermore, "It is not easy to extract from the medical studies exactly what criteria are used to measure success ... The reader searches in vain for any assessment by which that [satisfactory results] was determined." (Kessler, p. 54)

Physicians have not shown any eagerness to hear from dissatisfied subjects. Kessler points out that "Members of ISNA [the Intersex Society of North America], who are organized around their 'spoiled identity,' have been routinely snubbed by medical schools, medical conferences, and medical journals." (Kessler, p. 86)

Note that Alice Dreger was unable to find a physician to write an article for her book defending the current medical standards in the treatment of intersexuality. (Chase, p. 154; Howe p. 212) Books investigating the medicalization of intersexuality have been met by silence and worse from the medical community. Chase notes that "When Dreger's book led to an editorial in the New York Times questioning the ethics of early genital surgeries, a leader in pediatric endocrinology privately advised his colleagues that Dreger's goal was personal notoriety and that her work should be ignored." (Chase, p. 154)

The current medical theory has created conditions that make it hard to change. If "parents have no doubt about whether their child is male or female" and certain other conditions are met, "the intersexed child will develop a gender identity in accordance with the gender assignment ... and will not question her or his assignment and request reassignment at a later age." (Kessler, p. 15) This means that if the adult requests reassignment surgery, the blame can be laid on the parents for not being consistent enough in their belief in the child's gender. Chase points out that "Use of the claim, 'surgery is better now,' is a strategy for silencing intersexed adults: it relieves surgeons indefinitely of the responsibility of listening to any former patient" (though actually this should be a strong argument for postponing surgery since they would benefit from advances made in the meantime). (Chase, p. 151) The theory does not allow a means of disproof.

In addition, Kessler notes that "When noncompliance [with vaginal dilation procedures, which are often perceived as intrusive and painful] is mentioned in the medical literature, it is discussed as reflecting poorly on the patient rather than the procedure." (Kessler, p. 64) In other words, the medical profession has not been willing to examine the human side of their procedures.

The medical standard still leads to surgery, in spite of the fact that "Intersexual adults provide ample anecdotal evidence that their early genital surgery left them sexually impaired." (Kessler, p. 56)

Crouch believes that "The motivation for treatment seems to be socio-cultural rather than medical," and that "the reaction to the intersexed child reveals less about intersexuality than it does about a social and medical discomfort with intersexuality." (Crouch, p. 34) He includes some excerpts from papers, and then continues, "What is striking about these excerpts is their description of the birth of an intersex child as being a psychosocial or social emergency." Physicians should treat any underlying medical emergency, but those "are distinct from the social emergencies being referred to in these passages. Why, then the social emergency?" (Crouch, p. 30)

There appears to be some cognitive dissonance in the medical community regarding the treatment of intersex infants:

  • They don't recognize that they are affected by their own convictions:
    Kessler notes that "most of the physicians interviewed claimed that personal convictions of doctors ought to play no role in the decision-making process." (Kessler, p. 24) However, "doctors make decisions about gender on the basis of shared cultural values that are unstated, perhaps even unconscious, and therefore considered objective rather than subjective." (Kessler, p. 25) They seem blind to the fact that their view of an infant's genitals as "ugly" is a personal conviction which causes them to do cosmetic surgery that is medically unnecessary.
  • They've been reluctant to hear evidence that their procedures are not accomplishing their stated purpose of improving the lives of intersexed people:
  • Expert clinicians believe that if children are to grow up to be happy and mentally healthy, they must have "correct" looking genitalia. (Dreger, p. 11) Yet, as noted above, there have not been studies to show whether this is true, and there is considerable anecdotal evidence to show that surgery has not produced the desired result.
  • The goal of intersex treatment is to "facilitate a patient's positive psychosocial and psychosexual adjustment throughout life." (Schober, p. 161) Yet as Chase points out, the most harm is done by the attitude that intersexuality is shameful and must be hidden. (Chase, p. 147)
  • They also claim they are acting for the sake of the parents, but don't listen to the parents:
    Physicians talk about "the parents' anxiety and humiliation in being confronted with an anomalous infant. They talk as though they have no choice but to respond to the parents' pressure for a resolution of psychological discomfort" and must therefore make sure the child is male or female (Kessler, p. 32) Yet parents are given little choice. "Parents of the infant are in the background, referred to, 'educated,' but not heard from." (Kessler, p. 91) "Parents are provided with a comprehensive treatment plan ... that is presented as imperative and non-negotiable. The medical view is the authoritative view." (Kessler, p. 97) "The medical team frequently makes sex assignments with little, if any, involvement of the family." (Wilson and Reiner, p. 125) In addition, surgeons may push for surgery even if the parents don't perceive a problem: "Some infants who are eventually labeled 'intersex' are at first taken to be normal from the parents' (untutored) perspective." (Kessler, p. 93)
  • Their view of parental participation is self-conflicting:
    "Although most of the interviewers claimed that parents are equal participants in the whole process, they have no instances of parental participation prior to the gender assignment." (Kessler, p. 28) Indeed, how could parents be equal participants when doctors often withhold information? (Dreger, 1999, p. 12)

The authors quoted in this paper have in varying ways appealed to the medical profession to go back to the fundamental medical ethical principle: "First, do no harm." (Dreger, 1999, p. 13) They would like doctors to distinguish between a medical emergency and cosmetic surgery, and not treat the latter as an emergency. Helen Harmon-Smith tells medical professionals, "DO NOT schedule the first surgery before the patient even leaves the hospital. This will foster fear in the parents that this is life-threatening and that they have an abnormal or damaged child." (Harmon-Smith, p. 196) Physicians need to pay attention to Kipnis and Diamond, who observe that, "We are unable to predict with confidence the gender that an intersexed newborn will settle into during adulthood... Given the deep and largely uncharted pervasiveness of the effects of being a typical male or female, it is unlikely that surgical reassignment will ever truly 'normalize.'" (Kipnis and Diamond, p. 185)

Cultural Implications

Dimorphism

Dreger observes that "Intersexuality messes up just about every rule you have been led to believe about sex and gender. Anxiety ensues, and often in reaction to this anxiety, non-intersexuals have demanded order out of intersexuals." (Dreger, 1999, p. 6)

Crouch comments that "The certainty with which one can claim that there are only two sexes and only two corresponding genders is often unclear... It is precisely when an intersexed child is born and the medical team and family cannot name it as male or female, that our system of sex categorization is called into question." (Crouch, p. 29)

Kessler questions the need for two genders: "Language and imagery help create and maintain a specific view of what is natural about two genders, and I would argue, about the very idea of gender - that it consists of two exclusive types: female and male. The belief that gender consists of two exclusive types is maintained and perpetuated by the medical community in the face of incontrovertible physical evidence that this is not mandated by biology." (Kessler, p. 31)

As the above quotes point out, intersexuality challenges our notions about the dimorphic nature of sex and gender.

Language

It is helpful to pay attention to the words that are used to describe intersexuality, since they have an affect on how we view it. Crouch suggests that talking about genitals that are "variant" rather than "ambiguous" would reduce the perceived need for correction. Ambiguous genitals seem pathological, and therefore need to be fixed. (Crouch, p. 35)

Kessler comments that, "Given the pejorative language used to portray the large clitoris and the pitying language applied to the child with the small penis, it is not surprising that genital surgery in these cases is described as necessary." (Kessler, p. 38) She believes that language instead of surgery can be used to make the child look normal to the parents, and gives some suggestions about how this might be done. (Kessler, p. 128)

Counseling Considerations

I think it would be helpful for counselors in general to learn at least a little about intersex so they have a chance of recognizing it when it comes up, and so they won't be completely startled if a client does start to talk about being intersexed. Among the factors I would suggest being on the lookout for are:

  • Many operations as a child, especially if the client is uncertain what they were for
  • Shame around operations that occurred when the client was a child
  • Shame around their body
  • Gender confusion, especially when the client has a sense there's hidden secret

Note that clients who are intersexed may be experiencing a severe depression with suicidal ideation.

The parents of intersexed children who agree to treatment are likely to need to deal with confusion, with questions about whether they did the right thing. Their children may be very angry and may cut their parents out of their lives, so the parents may have to deal with grief and loss. The parents themselves may be angry at the doctors for not telling them about other options and for turning cosmetic surgery into an emergency. They need to break the silence that was encouraged by doctors, and the accompanying shame that comes from being the parent of a "freak." They need an opportunity to talk about all these feelings, and they also need to be in touch with other parents who have been through similar experiences. Besides listening, the therapist should provide references to books and especially to organizations like the ISNA (Intersex Society of North America) that may be able to help them find local groups.

Parents who are concerned about making a decision should be referred to groups and web sites so they can learn what people who have undergone treatment feel about it. This is especially important since physicians have tended to discourage that type of networking (perhaps because it casts doubt on their authority). It could be useful to help the parents think of the situation in different terms - as mentioned above, it's possible to talk about variability instead of ambiguity or pathology. It's possible to see the child as beautiful in his or her own right and to recognize that there are a lot of different forms a body can take without requiring cosmetic surgery. The therapist might raise the question of what would be lost by waiting and allowing the child to decide about surgery later. In particular, the gender that the child is raised may ultimately not be the gender that resonates for him or her, and infant surgery makes it harder to switch at a later time.

Parents also need support in expressing their grief, as they mourn the loss of the anticipated "normal" child. (Dreger, 1999, p. 18)

When the client is the intersexual, there will be many issues to deal with. Among the issues that might come up are:

  • Shame from the silence that was encouraged, the doctors' apparent fascination with their genitals, and the alienation they felt because of their difference, which was highlighted by repeated operations and other medical treatments.
  • Confusion from never having been told exactly what was done to their bodies, or the original diagnosis.
  • Anger at their doctors for lying to them.
  • Anger at their parents for hiding the truth from them and for allowing the operations to take place.
  • Feelings of grief and loss. Their ability to experience pleasure in sex and orgasm may be greatly reduced. They may have lost a part of themselves when they were helpless children, and this may have rendered them infertile.
  • PTSD. They are likely to have experienced a considerable amount of trauma around their situation, and may need support in dealing with PTSD.
  • Depression and suicidal ideation.
  • Perceived sexual abuse. A girl or woman who was subjected to dilation procedures to expand the capacity of her vagina may have experienced that as sexual abuse, as repeated, unwanted intrusions on her sexual organs.
  • Gender confusion. While growing up, the client may have experienced a sense of not being the boy or girl s/he was supposed to be, and may wish to examine the possibility of changing his or her gender identification. In this case references to gender identity centers or other transsexual groups would be helpful. As a part of this process the client may want to examine what it means to be male or female, and whether s/he identifies with one of those identities or with neither. The client may feel neither male nor female, but rather of a third gender.
  • Coming out issues. Intersexuals may go through the same coming out process that GLBT individuals go through. They need the same type of support in their coming out process. (See Preves, p. 59-62 on coming out as intersexed)
  • Sexual difficulties. Many intersexuals have difficulty with sex. They may feel too much shame to try to share sex with another person; they may not be able to experience sexual pleasure; or they may have had too much attention paid to their genitals when they were young to feel comfortable with sex.

Empathic listening is needed as intersexed clients work through the many issues that they have to deal with not only because of their biological condition, but also because of the medical treatment given to them and the reactions they have had to face.

Talking with others who have faced the same issues can be very helpful, so the therapist should help them find appropriate groups and web sites. The therapist may help them develop a language to talk about their condition which is not shaming. In addition, just as a victim of sexual abuse may find healing in confronting his or her perpetrator, (Bass and Davis, p. 133) people who are angry at the medical treatment they received as children to "cure" their intersex condition may wish to write to their doctors to tell them how the treatment as affected them. This might be empowering both as an expression of their feelings which breaks the silence they were taught, and also to give them a sense of helping to make a change for others.

In summary, intersexuals and their parents face many difficult psychological issues, and need the support of others in similar situations, as well as counseling to deal with, among other things, grief, anger, shame, confusion and trauma. Knowing something about intersexuality is helpful to counselors who are worked with individuals who are intersexed.

2002 Elaine S. Cook

References:

Bass, E. and Davis, L. (1988) The Courage to Heal: A Guide for Women Survivors of Child Sexual Abuse. New York: Harper & Row.

Cameron, D. (1991) Caught Between: An Essay on Intersexuality. In Dreger, A. D. (Ed.) Intersex in the Age of Ethics (pp. 91-96). Hagerstown, MD: University Publishing Group.

Chase, C. (1999) Surgical Progress Is Not the Answer to Intersexuality. In Dreger, A. D. (Ed.) Intersex in the Age of Ethics (pp. 147-159). Hagerstown, MD: University Publishing Group.

Coventry, M. (1999) Finding the Words. In Dreger, A. D. (Ed.) Intersex in the Age of Ethics (pp. 71-76). Hagerstown, MD: University Publishing Group.

Crouch, R. A. (1999) Betwixt and Between: The Past and Future of Intersexuality. In Dreger, A. D. (Ed.) Intersex in the Age of Ethics (pp. 29-49). Hagerstown, MD: University Publishing Group.

Devore, H. (1999) Growing Up in the Surgical Maelstrom. In Dreger, A. D. (Ed.) Intersex in the Age of Ethics (pp. 79-81). Hagerstown, MD: University Publishing Group.

Dreger, A. D. (1999) A History of Intersex: From the Age of Gonads to the Age of Consent. In Dreger, A. D. (Ed.) Intersex in the Age of Ethics (pp. 5-22). Hagerstown, MD: University Publishing Group.

Dreger, A. (2001) Why do we need ISNA? In ISNA News, May 2001. Petaluma, CA.

Groveman, S. A. (1999) The Hanukkah Bush: Ethical Implications in the Clinical Management of Intersex. In Dreger, A. D. (Ed.) Intersex in the Age of Ethics (pp. 23-28). Hagerstown, MD: University Publishing Group.

Harmon-Smith, H. (199) A Mother's 10 Commandments to Medical Professionals: Treating Intersex in the Newborn. In Dreger, A. D. (Ed.) Intersex in the Age of Ethics (pp. 195-196). Hagerstown, MD: University Publishing Group.

Hawbecker, H. (1999) "Who Did This To You?" In Dreger, A. D. (Ed.) Intersex in the Age of Ethics (pp. 111-113). Hagerstown, MD: University Publishing Group.

Howe, E. G. (1999) Intersexuality: What Should Careproviders Do Now?. In Dreger, A. D. (Ed.) Intersex in the Age of Ethics (pp. 211-223). Hagerstown, MD: University Publishing Group.

Kessler, S. J. (1998) Lessons From the Intersexed. Piscataway, NJ: Rutgers University Press.

Kipnis, K. and Diamond, M. (1999) Pediatric Ethics and the Surgical Assignment of Sex. In Dreger, A. D. (Ed.) Intersex in the Age of Ethics (pp. 173-193). Hagerstown, MD: University Publishing Group.

Moreno, A. (1999) In Amerika They Call Us Hermaphrodites. In Dreger, A. D. (Ed.) Intersex in the Age of Ethics (pp. 137-139). Hagerstown, MD: University Publishing Group.

Preves, S. E. (1999) For the Sake of the Children: Destigmatizing Intersexuality. In Dreger, A. D. (Ed.) Intersex in the Age of Ethics (pp. 51-65). Hagerstown, MD: University Publishing Group.

Schober, J. M. (1999) A Surgeon's Response to the Intersex Controversy. In Dreger, A. D. (Ed.) Intersex in the Age of Ethics (pp. 161-168). Hagerstown, MD: University Publishing Group.

Triea, K. (1999) Power, Orgasm and the Psychohormonal Research Unit. In Dreger, A. D. (Ed.) Intersex in the Age of Ethics (pp. 141-144). Hagerstown, MD: University Publishing Group.

Wilson, B. E. and Reiner, W. G. (1999) Management of Intersex: A Shifting Paradigm. In Dreger, A. D. (Ed.) Intersex in the Age of Ethics (pp. 119-135). Hagerstown, MD: University Publishing Group.



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