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Note: the speculations on this page are my own, and not those of the
Intersex Society of North America (ISNA)
or any other intersex support group.
When I established this page in 2000 it soon incorporated feedback from various community sources, nevertheless in May/June 2003 I was bombarded by emails from several ladies who strongly objected to this page. I was annoyed by the implication in some communications that only intersexed individuals should write about the intersexed condition, but nevertheless I took the page down. However after several supportive discussions I have resurrected this page for information purposes, minus some items. I would like comments from anyone mentioned on this page, and particularly welcome constructive feedback. I'm trying hard to strike a balance here. |
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Introduction An intersex (sometimes referred to as intersexual) infant is a baby born with ambiguous genitalia and sexual organs, neither clearly male nor clearly female. Many sources restrict to the definition to only "ambiguous external genitalia" but this excludes intersexed children where their external genitalia are normal in appearance, for example in cases of complete Androgen Insensitivity Syndrome (AIS). I'm adopting the wider definition in this article. Medically, intersexed children can be categorised in to several main groups:
Intersexed infants have no say in their eventual sex and gender assignment, which in some cases may be contrary to their genetic karyotype (chromosomal sex). This article discusses the treatment of intersexed infants, and particularly the re-assignment of genetic males as females. While many intersexed children are genetically male, almost all of them are raised female. This means that many children who have XY chromosomes are being coaxed into female gender roles that nature may not have intended for them. This has been a common and accepted practice since the mid-1960's, however since the highly publicised failure of the gender re-assignment of David Reimer (aka the "John/Joan" case) there has been increasing and understandable concern about instances of unsuccessful sex re-assignment of intersexed babies. Prevalence of Intersex InfantsThe Intersex Society of North America (ISNA) estimates that intersexed infants account for one in every 2,000 births, about 2,600 a year in the USA alone. Early genital surgery is a common and accepted practice, a 1998 article in Pediatric Nursing even suggested that doctors ought to consider it child abuse if the parents refused genital remodelling. Of those 2,600 infants at least 2,000 (the ISNA says 9 in 10) will have remedial genital surgery, including about 100 to 200 (4-8%) boy-to-girl paediatric surgical sex re-assignments such as John/Joan had. The later figure is supported by a long-term study of 700 intersex children which found that 40 (6%) had been sex re-assigned at birth. Sex
Assignment
An abnormality of the chromosomes (factor 1) is not strictly an intersex condition in itself, although it and hormone abnormalities are often associated with intersexed cases. The criteria for determining the sex of the person to be registered are not laid down in the Births and Deaths Registration Act 1953, however, the practice of the Registrar General is to use exclusively the biological criteria: chromosomal, gonadal and genital sex. A baby is "intersexed" when factors 1, 2 and 3 are not all normal male or female, or contradict each other. As initial assignment of sex is often made exclusively based on factor 3, and if the genitalia are normal appearing then it may be some time before it becomes evident that a baby is actually intersexed, if the sex of the infant is then reassigned it will be extremely difficult to get the Birth Certificate changed.
Factors 7 and 8 are commonly and unfortunately combined under "gender-role", but I prefer to keep them separate when possible. A particularly confusing but frequent use of the word gender is in the phrase "Gender Re-Assignment Surgery" (GRS). It's important to differentiate between physiological sex, and the social & mental gender, surgery can't ever change the later so "Sex Re-Assignment Surgery" (SRS) is a better, although still exaggerating, description of what surgery can achieve. It is quite possible for the above factors to disagree and contradict, e.g. an intersexual person may have a female birth certificate, a male karyotype (XY genes), lack any internal female sex organs, have female appearing genitalia and sexual characteristics, live as a woman, but believe that she is really a man. Sex
Assignment and Re-assignment of Intersexed Children Only if there are ambiguities in the genitalia is further investigation likely before a babies sex is assigned. When deciding the best sex to assign to an intersexed child, the physician considers the following:
Sex assignment is usually done within a few days of birth. However, occasionally a baby may be assigned to one sex at birth, but for various reasons the physicians later recommend its re-assignment to the other sex, e.g. because of the discovery of viable testes in a supposed baby girl. The earlier this re-assignment is done the better, and is very rare after about 24 months of age as it's considered that the baby's gender will be irreversibly set by then. The term "sex re-assignment" is also often used to refer to the deliberate legal and social sex assignment of a baby contrary to its chromosomal sex (e.g. assigning a "XY" baby as female), even if it was never actually assigned to its chromosomal sex. Doctors have a list of standards according to which they determine the "normality" of a newborn's genitalia, this includes two functional assessments of the adequacy of phallus size. Young boys should be able to pee standing up and thus to 'feel normal' during little-boy peeing contests; adult men, meanwhile, need a penis big enough for vaginal penetration during sexual intercourse. The assignment of a genetically male baby as a girl is therefore often due to a badly damaged or undeveloped penis - surgeons can make a vagina relatively easily but it is hard to make a penis that is functional. Boys are typically born with a stretched penis ranging in length from 2.9 to 4.5 centimetres (1.25 to 1.75 inches), with a urethra opening at the tip (rather than on the side or base of the penis) that releases urine, and a scrotum that contains testes. For new-born girls, clitoral length at birth typically ranges from 0.2 to 0.85 centimetres (0.08 to 0.33 inches). Those falling in between these two sizes will often have their organs shortened. A clitoris longer than 1 centimetre is considered unacceptably enlarged and may be shaved down purely for purposes of looking normal. On the other hand if the penis is less than 2.0 centimetres long, concern is often expressed about whether the boy will be a "boy".
A penis less than 1.5 centimetres long and 0.7 centimetres wide is usually considered to be unacceptably short and inadequate for later sexual performance and thus deemed to be a clitoris, and he a "she". In this instance, although genetically "XY" male and perhaps with testes, the infant will be re-assigned as female and her "micropenis" surgically altered to become a clitoris. Such re-assignment is particularly likely if also the urethra does not open at the tip of the phallus, a condition known as hypospadias. "If a baby has hypospadias, the urinary function will not be the same as other males," says Dr. Aydin Arici, a Yale-New Haven Hospital obstetrician and gynaecologist who specialises in reproductive endocrinology, explaining why male babies with such a condition might be reassigned. "For example, that individual will not be able to urinate standing up." Clearly the most important factors in the sex assignment of intersexed children are: (i) achieving a "normal" appearance of the genitalia in the assigned sex; and (ii) sexual function. If a male's phallus is deemed unlikely to be able to "perform" adequately, then re-assignment as a female may become the preferred medical choice. But appearance and sexual function is not the only factor used in sex assignment - many laboratory tests are also done to determine the child's genetics and potential for fertility. In the vast majority of cases of significant ambiguity, however, a female assignment is made - perhaps sometimes for the sake of medical expediency. "It's easier to dig a hole than to build a pole," doctors are supposedly quoted as saying. But once a sexual assignment is made, it's effectively irreversible, especially if surgery must be performed. Gender Establishing
a gender identity is a process that most people take for granted,
but that no one completely understands. Scientists and
sociologists agree that traditional gender roles are in many ways
socially constructed - girls learn to wear dresses and boys learn
to wear pants. But no one seems to understand what makes a transsexual
child raised in a female gender role embrace the male role as
her own and vice versa. And no one can even begin to explain
why many intersex children raised as one sex eventually migrate
back to the gender that their genetics or their prenatal hormonal
environment would have predicted.
Summers points to the work of John Money, a physician at Johns Hopkins University who became famous in the 1960s for turning a boy (Bruce Reimer) with a botched circumcision into a girl (Brenda) - the so called 'John/Joan' case after the names used by Money. Money initially declared victory, but his work was later undermined in a landmark study by doctors Milton Diamond and Keith Sigmundson which revealed that the girl grew up with a masculine gender identity anyway. Summers says "The whole idea that given hormone treatment and the right social environment, you can determine gender identity. It's not really quite so simple". 'Joan' herself proved the point, 'John' ending his tragic life in 2004 with suicide . Nevertheless the 'John/Joan' case is actually fairly unusual as John was reassigned female as Joan at just seven months age, and there are apparently numerous cases of successful gender re-assignment at this age. Indeed, since the 1960's it has become accepted practice that young boy babies with genitalia problems can be gender re-assigned as female if this will later allow them a normal sex life as woman, which they could not have as a man. The American Academy of Pediatrics has established a policy that states "children whose genetic sexes are not clearly reflected in external genitalia (i.e. hermaphroditism) can be raised successfully as members of either sex if the process begins before the age of 2 years.". However the authoritative John Hopkins Children Hospital has recently become slightly more cautious, saying: "While we recommend that sex assignment be postponed until after a diagnosis is made for a newborn with an intersex syndrome, older infants or children will have already lived as either a boy or girl regardless of diagnosis. In such instances, it is usually best to continue with the original sex assignment because such a change is often unsuccessful if it occurs after the first 18 months of life. We feel that sex re-assignment within the first month of life is most likely to be successful if such a change is determined necessary by parents and doctors. For most older children, a re-assignment should only be considered if desired by the child." Some scientists claim that subtle cues from parents contribute to divergent gender identities in re-assigned intersexed children. But studies of intersexed siblings who are both genetically female, are both raised as girls in similar environments and both unexpectedly masculine at puberty show that one sibling might embrace a new masculine identity while the other one rejects it. While social cues were undoubtedly important, the children's identity must have at least partially come from something inside of them. Since both children were genetically female, this identity could not have been entirely genetic.
Female
Sex Assignment Procedure
Gary Berkovitz, director of pediatric endocrinology at the University of Miami School of Medicine, explains the early re-assignment procedure for female assigned babies as follows: "We remove the testes because they would make testosterone and virilize a girl. The phallus is recessed. Current techniques emphasise maintenance of innervation, and experimental evidence indicates that sensitivity in the new clitoris is preserved. However, none of the children has grown to adulthood yet to see if it works. The new techniques are very different than what was done 30 to 35 years ago. .... Hormones are part of the picture too. We initially try to re-create a normal puberty, give a little oestrogen at first, then progesterone. The girl won't bleed because there is no uterus, but she can have normal cycles. Often it is possible to do this with birth control pills as the oestrogen supplements. Breasts develop too, given appropriate hormonal stimulation." Further plastic surgeries during puberty usually complete the transformation, with the external female genitalia being "touched up" and a vagina created when the young woman is ready to begin her sex life. For the vaginoplasty, tissue from the child's colon is transplanted and fashioned into an artificial vagina that is capable of receiving a penis during intercourse. The vagina must be dilated either through regular intercourse or with an artificial dilator up to several times a day, sometimes for years, to ensure that it remains open. Doctors usually don't perform vaginoplasties until the child reaches adolescence, but they are sometimes performed at a young age, requiring parents to perform the dilations on their children an act that would normally be considered sexual abuse. Historically the results of genital surgery have often been unsatisfactory - loss of sensitivity, pain on intercourse and unacceptable appearance being common. But surgeons are adamant that techniques have much improved in the last ten years and that the final results of surgery and hormonal treatment are almost always very successful, the young woman presenting an undoubtedly female physical appearance even under the closest examination, as well being sexually functional. Research
Sexual
Orientation However, while the limited available medical evidence does suggest that a lesbian or bisexual sexual orientation may be more likely in a woman who was sex re-assigned as a infant than for a natal women, those with a primarily heterosexual attraction to men are still by far in the majority. The actual situation is therefore being somewhat misrepresented in the public perception. This may in fact be a result of a deliberate assimilationist philosophy by many women. Boy-to-girl intersexed children who settle well into their assigned gender and grow up identifying themselves as heterosexual women tend to assimilate to the point of entering so-called "normal" committed relationships with men. Those who identify as lesbians find themselves marginalized from mainstream society to some degree because of their homosexuality. On the other hand the psychosocial realities facing a sex re-assigned woman involved in a relationship with a man tends to pull her away from open activism: for example social stigma attaches to an alleged heterosexual man once it becomes known that his girlfriend or wife was born a male. Additionally, painful childhood experiences will often dissuade her from wanting to talk to her partner about her "secret", and she may feel that doing so will break the relationship. In the balance between personal happiness and political activism, the successfully sex re-assigned woman, perhaps married with a good career and adopted children, will usually choose happiness.
Differing
View Points Many activists believe that genital surgery on infants should be considered despicable and cruel rather than routine. Their experience is that intersex genital "mutilation" and other medical management of intersex children results in post-traumatic responses similar to other forms of childhood sexual abuse. They believe that an intersexed person should be left able to make an informed decision herself on whether to have genital surgery, at the appropriate point in her life. [Another possible route some times advocated is for the intersexed child and his/her parents to make decisions together sometime before adolescence.] Meanwhile, doctors can assign a temporary gender without surgery, based on medical tests and physical appearance, with the understanding that the child may wish to transition to the opposite gender later in life. Interestingly, the ISNA does not support any attempt to break down the binary system of gender and allow for a "third sex." It calls such a designation impractical and arbitrary. However, there are still supporters of early surgery and sex-reassignment. Despite the undoubted mistakes made in the past, the case for a "no early surgery" policy is still disputed and in practice is a hard demand to meet. Most physicians do not consider what they are doing to be wrong and still recommend surgery for intersex births, while many parents feel desperate to "fix" their children. Also, it should be remembered that while there are now many well documented and sometimes well publicised instances of the problems caused by early genital surgery on intersexual children, and the child's later rejection of their assigned sex, statistically these still form only a very small proportion of the total number of treated intersexed infants, as is shown above. There are assuredly many cases where a sex assignment / re-assignment and associated early genital surgery can be judged, even after hard questioning, to have been extremely successful. Certainly not everyone - even those who work with intersex people - believes that genital surgery is necessarily inherently evil. Many specialists argue that the current Model of Care for intersexual children actually works quite well. "If our study shows that the vast, vast, vast majority of people are in fact happy with the gender alignment that is given to them, then I'd actually ask the question 'Well of the few that we've made the wrong gender assignment to, could we have retrieved that situation earlier, but how different is the rate of that occurring to trans gender, transsexual issues occurring in the rest of the population?'," argues Dr Sonia Grover, a gynaecologist at the Royal Children's Hospital in Melbourne. In our society we tolerate that some males feel like women inside. "So we should, and I think we need to have the broad-mindedness and openness to do the same in our patients with medical conditions."
Dr Grover believes that surgery can be more successful if it is done in children rather than at a later age, because the patient is smaller. "It's not necessarily easier for me to make the corrections that I've watched the paediatric surgeon here in Melbourne do with relative ease in little children," she said. "I'm also conscious that it's counter to what other people are saying elsewhere in the world, that we shouldn't be doing it on little kids, and we should be doing it when they're older. I'm not sure. I'm not sure that I'm failing in terms of sexual function outcome but I feel like I have to work much harder to get a good outcome than the paediatric surgeon, John, who does it as a baby." she explained. "The ISNA is particularly unhappy about the surgeries. But this is a skewed population. That's why those people join the ISNA, because they are upset," says Rosario, the UCLA sexologist and child psychiatrist. While some ISNA members hope that intersex children will be allowed to make their own decisions about genital surgery once they reach adolescence, Rosario is unsure that intersex teenagers can make decisions any better than their parents can. "Teenagers are freaking out about pimples-how can they even begin to think about correcting their genitalia?" he says. The arguments have been summarised by Ian Aaronson, a urologist at the Medical University of South Carolina. "There are presently two points of view" says Aaronson. "The first - do nothing, let patients assign themselves, no surgery - is held by psychiatrists who have had to deal with patients who have, in retrospect, been badly handled - John/Joan, for example. This is countered by many physicians who believe, all in all, their patients are doing quite well."
The Arguments for Early Surgery:
The Arguments for Delay:
The Future The bottom line is probably that we don't have good enough research to make good decisions.
The studies that have been done suggest most intersex people are satisfied with the gender they were assigned, though maybe not with their equipment. However, the ISNA's propositions seem to be gradually gathering support. The North American Task Force on Intersexuality (NATFI) was recently formed, and this organisation hopes to put some of the ISNA's ideas into practice through education and medical reform. NATFI plans to establish guidelines for the medical management of children born with ambiguous genitals but not until first completing multicenter follow-up studies of a range of intersex patients to determine their psychosexual and functional outcomes. Those studies should take about three years. While far more work needs to be done before it can be certain that early genital surgery on an intersexed child is always the wrong choice, surgery is undoubtedly becoming less common for "minor" cases of genital abnormalities, this revised positioned being undoubtedly assisted by the fact that in the last decade the diagnosis and treatment of genital disorders has advanced dramatically. John Hopkins's John P. Gearhart, who directs the Department of Pediatric Urology points out that debating a case like John/Joan's is really a moot point, today such a child who tragically loses his penis would certainly be raised as a boy and would undergo penile reconstruction surgery at age 10 to 15. There is also an increasing reluctance by physicians, possibly in part worried by the negative publicity, to reassign a physically intersexed but chromosomally male babies as female. Even when sex re-assignment seems the best option, many specialists may now prefer [rightly or wrongly] to delay any major genital surgery until puberty when it's become clear that the girl has adjusted well to her assigned social gender and has begun taking feminising oestrogen. Possibly the last words on this page should be left to an echo from a defunct intersex support site: "Intersexuals who are subjected to neonatal surgery undergo that early physical trauma and resulting lifelong trauma on many levels, [while] intersexuals who miss early surgery often grow up alone and confused... and often abused", but I hope that is an excessively bleak and depressing point of view in many cases. Useful Links Some Sources
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