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We appreciate that parents are motivated by the desire to minimize any psychological trauma in their child associated with having un-typical genitalia and by the earnest concern that their child should 'fit in' with his or her peers. While we can state with authority that psychological counselling and peer support from other intersex individuals in childhood and early adulthood are absolutely critical to achieving a positive outcome, the same assurance cannot be given regarding surgical intervention in infancy/childhood.
Although some intersexed adults are now choosing to identify as 'intersexed' rather than as 'male' or 'female' we would still favour raising an intersexed child in one of the two conventional social genders. However, we consider the practice of reinforcing that social gender by surgery to be less clear cut.
A note on terminology: The medical literature often employs the term 'phallus' to refer to either the penis or the clitoris (since both originate from the same primitive tissue during foetal development). Surgery on the penis is often referred to as 'phalloplasty'. When describing a clitoris that is somewhat larger than average, some people use the term 'phallo-clit'. The term 'clitoromegaly' is sometime used in medical texts to refer to the state of having a larger-than-average clitoris. |
| Nature vs Nurture |
The argument for surgical intervention is rooted in the (now highly debated) theory, initially developed in the 1950s, that at birth infants' brains have not been biologically imprinted or pre-programmed with a particular gender and that 'nurture' (i.e. how a child is reared, and the gender cues such a child receives from its parents and peers) will ultimately determine gender identity. This is sometimes explained in the popular press by the crass statement that "If you put them in a blue room they grow up as boys... put them in a pink room and they become girls".
The other key component of this theory is that a child's perception of its own genitals is also critical to the way in which gender identity develops; that if a child looks down and sees a penis then it will develop a male gender identity, and if it looks down and sees no penis then it will develop a female gender identity. This is completely unproven, but is probably the biggest underlying assumption made by doctors performing genital surgery on infants. But gender development is not understood even at the most basic level. It is a complex and mystical process, and we don't even know the age at which a sense of gender begins to develop.
The most vigourous promoter of the surgical intervention theory was perhaps John Money Ph.D. of Johns Hopkins University in the US, who posited that intersex infants born with 'ambiguous' genitalia could be reared as either male or female with equally positive outcomes as long as the genital appearance is in alignment with the assigned gender. Money stated that on this basis it was appropriate to perform genital surgery on infants before any assessment could be made of the child's own expression of gender. Consequently, starting in the 1950s, the paradigm of medical management of such infants became one of early surgical intervention to conform the genitals to the gender of assignment. In the overwhelming majority of cases this meant a surgical 'feminizing' of intersexed infants. |
'Feminisation' of Intersexed Infants |
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Surgeons have further rationalized this practice by arguing that the creation of a typical sized functional male penis is more difficult that the creation of a vagina. Again, the popular press has latched onto a flippant remark made by a clinician in the 1950s/60s that, "It's easier to dig a hole, than to build a pole." However, as mentioned elsewhere on this site (see Vaginal Hypoplasia), there is good reason to question the legitimacy of such a thesis, given the current inadequacies of vaginoplasty surgery. In fact, the medical literature describing paediatric gender reinforcement surgery usually makes very little mention of the creation of the vagina; all the emphasis is placed on the reducing the size of the penis/clitoris. It's almost as if paediatric surgeons (most of whom will be urologists rather than gynaecologists) are -- in leaving it for someone else to deal with when the child reaches maturity -- just assuming that vaginoplasty will be unproblematic. There are no studies that follow up these surgically 'half-feminized' infants to determine whether the second part of the feminizing process, the creation of a vagina, is successful in later life. As long as the offending small penis or large clitoris has been removed/reduced, that's all that seems to matter.
We might add at this point that we totally decry the practice, advocated by some clinicians, of performing vaginoplasty in infants/children. If surgical vaginplasty is to be carried out at all (and it is possible that better results can presently be obtained via pressure dilation anyway - see Vaginal Hypoplasia) it is far better to consider this, and other gender related surgical procedures, once the tissues have stopped growing and reached their adult state; and at a time when the patient can have a say in what is being proposed. It seems to us that the practice of childhood vaginal surgery, like that of gonadectomy in infancy/childhood, has more to do with clinicians (and parents in some cases) not wanting to face telling a teenager the truth about her diagnosis, than with obtaining the best possible psychosexual outcome for the patient. One of our medical advisors, Miss Sarah Creighton (Consultant Gynaecologist, Middlesex/UCL Hospitals, London) who is a gynaecological surgery specialist (see Recommended Clinicians), told us at an 'AIS open day' clinic in Spring 2000 that over the last 5 years she and her colleagues had examined some 46 adolescents under anaesthetic who’d had ‘gender corrective surgery’ in infancy/childhood and that 90% would require further surgery to correct the inadequacies of the early intervention. |
| The "John/Joan" Case |
John Money's theory that nurture (upbringing, social conditioning) and not nature (foetal brain androgenisation, i.e. male gender imprinting) is the critical variable in determining gender was for a while thought to be confirmed by the case of David Reimer (the so-called "John/Joan" case). David ("John") was not born intersexed but was a typical male baby whose penis was lost in a surgical accident during a routine circumcision operation) in the 1960s. On Money's recommendation, "John" was reared as "Joan" on the assumption that without a penis John could never assume a male gender identity or function in society as a male. Money saw this as a unique opportunity to prove to the world the malleability of gender.
Over the ensuing years Money widely reported in the medical literature that this course of action had been wholly successful and that John had readily assumed the gender role of Joan. Using this reported outcome to support the notion of early surgical intervention in intersexed infants, paediatric endocrinologists and paediatric urologists failed to widely question either the efficacy or the ethical propriety of this practice.
Only recently has the true outcome of the John/Joan case been reported by Diamond and Sigmundson (see refs at end of page) and "John" himself has gone public using his real name (David Reimer) and has co-operated in the writing of a book telling his story. It has now been confirmed that John was never content in the role of "Joan" despite surgery to remove his testes and despite an extended course of oestrogen therapy resulting in breast development. Indeed, in later adolescence Joan reverted to living as John, and married a woman, in his re-assumed male gender identity. Sadly, David committed suicide in mid-2004 at the age of 38.
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Clitoral Recession |
As mentioned in the introduction, apart from the question of using surgery to reinforce a gender assignment in cases of ambiguous genitalia, there is also the debate about surgery to reduce the size of a larger-than-average clitoris in an infant/child that is clearly female. The Intersex Society of North America (ISNA) (see Links to Other Sites) whose membership includes a substantial number of adults who were subjected to genital surgery in infancy, has concerns that surgery may result in diminished sexual sensation due to nerve damage in the course of clitoral/phallic reconstruction, and in the production of scar tissue which may cause pain and reduced sensation. We have adult women members in our support group who have had such surgery and who do have a sex life, but we also have adult women who would certainly have been candidates for, but who have escaped such cosmetic surgery and who are perfectly content with their situation. A member of our group emailed to other group members as follows, during a discussion about surgery: |
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I never had the clitoral recession surgery myself, although I certainly would be a candidate for one. I'm realizing that I had some very strangely apathetic care growing up, and no one ever mentioned the possibility of surgery to me. I don't know if I just had enlightened doctors who saw no need to ‘normalize’ me or what, but it was an un-subject and never discussed at all.
I was/am a pretty traumatized kid over the whole AIS thing, especially the enlarged clitoris, which I never spoke of to anyone (the last mention to another human being about it, before finding the [AIS email] circle and especially ______ [another group member in similar situation], was my Mom telling me as a young kid not to worry about it, that I would grow into it. Wrong, Mom, but it was a nice try). The idea of someone seeing me naked, someone seeing that 'thing' mortified me to a degree I still haven't conquered. I shut off the entire idea of relationships and sex for this lifetime because I didn't think I would ever find someone who could understand or accept it, not that I would have thought about giving anyone half a chance to come to any understanding or acceptance.
Now, as I climb toward that mystical age 30 mark, I feel like I'm finally getting my life into some kind of order and coming to believe in the fact that I can have a normal, happy life. Since finding the support group and the circle, I'm a lot happier with my lot in life and realize that I'm glad I didn't risk the loss of sensitivity through the surgery. I realize now that it is not impossible to find someone who would understand and love me for me, and who would not worry, to the extent that I do, about the size of my clitoris. It bothers me a lot that I can't be totally sure whether B.C. (Before Contact) [with the group] I would have gotten the surgery, but with the realizations I've come to since then, I'm glad that I didn't do it. More than anything, I want to make sure that someone who does it has had the chance for those realizations that came to me relatively late in life. |
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Clincians who advocate such surgery say that the older practice of clitorectomy (i.e. complete removal of the clitoris or phallo-clit) is no longer practiced and that the newer method of clitoral recession, in which the clitoris is reduced in length but with the nerve supply supposedly being maintained, poses no threat to erotic sensation. Intersex advocacy groups like ISNA, and some clinicians, claim that this is not necessarily true. |
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| Feminist Viewpoints |
There is also the feminist view that this type of surgery is rooted, at least partly, in a fear by a male-dominated medical profession of the notion of a) an undersized phallus on a male person, and of b) a structure that resembles, however slightly, a male phallus on a female person. See Debates/Discussions page for an interesting discussion of this ("Re-membering a Queer Body"). In some societies (e.g. in some Asian countries) intersexed infants that would have been 'feminized' by surgery in N. America and Western Europe are raised as males without any surgery, because of the kudos associated with having male children. This illustrates the fact that many of these decisions regarding surgery are as much cultural as medical. We recommend Suzanne Kessler's article The Medical Construction of Gender: Case Management of Intersexed Infants, published in Signs, the Journal of Women in Culture and Society, Autumn 1990 (click here to see a precis of the article prepared by the support group). See references at foot of page for information on Suzanne Kessler's 1998 book, Lessons from the Intersexed.
Some adult intersexuals also object to the overwhelming 'heterosexual imperative' that is assumed in the treatment of intersexed infants, i.e. that a woman will always want a vagina in order to be penetrated by a man, and that a man will always want a penis in order to penetrate a woman.
Performing surgery on genitals to influence gender development is unproven, but doctors don't think enough about why they are even suggesting surgery.
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| A Call for Follow-up Studies |
| Unfortunately, no comprehensive follow-up studies have yet been undertaken to assess the long-term outcome of populations of intersexed infants who were subjected to surgery as well as those who were assigned a gender but without surgical intervention. The medical community broadly acknowledges the need for such studies. Indeed, the recently formed (end of 1999) North America Task Force on Intersexuality (NATFI) -- a consortium of paediatric endocrinologists, paediatric urologists, mental health professionals and two individuals who are themselves intersexed -- has announced the goal of undertaking such studies, with the objective of improving the health care and psychological welfare of intersexed infants.
Paediatric endocrinologist Dr. Garry Warne (see Recommended Clinicians) and colleagues are setting up (late 2000) a consortium called the MCRI Sex Study Group, funded by the Murdoch Children's Research Institute. It will carry out an epidemiological study of long term outcomes of intersex patients and others born with atypical genitalia treated at the Melbourne Royal Children's Hospital. They plan to include girls with CAH and men born with perineal hypospadias and/or micropenis.
The AIS Support Group strongly supports such efforts and calls on the medical community at large to undertake similar studies, so that physician recommendations can be based on objective data rather than on speculation. As such data becomes available, the support group looks forward to publishing it on this web site so that parents confronted by this challenging situation can be guided by current and accurate information. |
| A Recommendation |
| Dr. Cathy Minto (Gynaecology Research Fellow, Middlesex/UCL Hospitals, London) who is one of our advisors (see Recommended Clinicians), makes the following recommendation: |
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"A crucial aspect for parents to consider when faced with a child whose genitalia have been labelled as "abnormal", is who has evaluated the genitalia, how experienced are they and what are they basing their assessment on? Parents should feel able to ask as many questions as they want, ask for many second opinions and have a clear idea of what is being discussed.
Paediatric urologists do not have a clear idea of the range of sizes of female genitals, and spend most of their time with penises. We [gynaecologists] are aways being asked by 'expert' paediatric urologists, what the anatomy and normal sizes of the clitoris and labia are. Other specialists (general surgeons especially, and plastic surgeons) will not know the normal range. Most adult gynaecologists are also completely inexperienced in childhood female genitals, and should not be evaluating children. A child's clitoris can often look relatively big due to the flattened labia and lack of fat and pubic hair. There is a huge range, and if you do not know this you will do unnecessary surgery. The surgery will have consequences on the child's future sexual life; we just do not have much data yet to quantify the degree of damage.
Parents need to ask for expert opinions, and from more than one consultant where possible, with plenty of time; and with expert psychologists taking a leading role in the discussions. Although this is idealistic, parents should expect and demand such a service." |
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