Important Note: When I established this page in 2000 it soon incorporated feedback from various community sources such as the Intersex Society of North America (ISNA), nevertheless in May/June 2003 I was bombarded by emails from several ladies who strongly objected to this page and implied that only intersex individuals should write about the intersex condition. After several supportive discussions I have retained this page for information purposes, minus some peronnal content. I would appreciate comments from anyone mentioned on this page, and particularly welcome constructive feedback. I'm trying hard to strike a balance here! |
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 intersex 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, intersex children can be categorised in to several main groups:
Intersex 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 intersex infants, and particularly the re-assignment of genetic males as females. While many intersex 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 intersex babies. Prevalence of Intersex InfantsThe Intersex Society of North America (ISNA) estimates that intersex infants account for one in every 1,500 to 2,000 births, i.e about 2,600 a year in the USA alone. Some statistics:
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 latter 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 intersex 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 "intersex" 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 intersex, 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 Intersex 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 intersex 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 intersex 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.
Bill Summers, a
professor of medical history at Yale who has studied the science behind
gender and sexuality says "You have to learn somehow what it means
to be a boy or a girl. You don't come born with this idea.
But enough people say, 'I always knew I was a boy but I was raised as a
girl' that I can't doubt they have these feelings".
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 intersex children. But studies of intersex 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. Other
scientists believe that sex hormones acting upon the brain during
development play a big role. This seems to be true for establishing
both gender identity and future sexual orientation. But
scientists still cannot explain how hormones could make someone feel
like a member of a particular sex, as so many intersex people
say they do. The bottom line: We just don't know where gender
identity comes from, but it is unlikely that either biology or
society operates independently from the other. Given this mix,
the danger inherent in operating on a non-consenting intersex
infant increases manifold. If surgeons turn a genetically male
child with testes and an "inadequate" penis into a girl,
they not only destroy his future fertility and sexuality, but may
compromise his chosen gender identity as well. "How
does [intersexuality] affect the brain? I don't know," Boney
admits. "But we shouldn't change the genitals because we just
don't know if the child will want them later." Gruppuso
cites the example of one of his patients, an XY intersex child
raised as a female, who decided at adolescence to transition to a
male. "The traditional approach assumed that assigned gender
would be accepted by the patient when he or she grew up, as long as
the assignment was accepted by the parents in an unambiguous
way. We now have reason to suspect that assigned gender may
not be accepted by the patient later on," he says. Overall,
the evidence from matched control studies of gender re-assignment in
infants who had ambiguous genitalia indicates that the destiny of
gender in early childhood is locked at a critical period similar to
imprinting in lower animals; this period is partially determined by
thyroid hormone levels. The window of opportunity closes
between 18 and 36 months; the same period in which language
acquisition occurs. Both windows are probably effects of
myelination, dendritification, and vascularization of the central
nervous system completed at about 18 months. In children
brought up contrary to their biologic sex due to the presence of
ambiguous genitalia at birth, the further away from this critical
period, the more difficult is the attempt to reassign gender.
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 One
study of 27 boys reassigned and raised as girls found that 3 now live
as males, an unsatisfactory 11% failure rate - although the same
research found that sex re-assignment was apparently successful in the
vast majority of subjects. A
study of 6 intersex woman found that all cases the results of the
genital surgery they had undergone as babies left a lot to be desired,
even after subsequent remedial operations the appearance of their
genitals was often still judged unsatisfactory - it is indeed to be
hoped that surgical techniques have now greatly improved. More
positively, one study of 85 people ranging in age from 21 to mid-60's
with various intersex conditions (including a 6 patients born with
micropenis who were raised as women) showed that almost all of the
patients were content with the gender in which they were raised. All
but two showed a gender identity and gender role in accordance with
their gender of rearing.
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 intersex 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 intersex
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 intersex 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 intersex 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: Intersex or Transsexual?
Another
typically confusing case is a Lady
Campbell. She was born in 1949, apparently with genital deformities. The
doctors advised her parents to register the baby as male and she was
christened 'George William Ziadie'. Although being bought up as a
boy, she preferred to "play with dolls and sew". She went to a boys-only school
and became sexually attracted to other
boys and wanted to be a girl. Age 13 she secretly contacted her mother’s gynaecologist,
who was sympathetic to her plight and gave her Estrogen
injections - very costly in the early
1960's. After leaving school she transitioned as 'Georgia'. Age 18, she
moved to New York to study fashion design and began modelling and dating
men. Whilst
there, her grandmother paid $5,000 for "sex change surgery ... No one
ever faced the knife more eagerly than I – you would have thought I was
going on a wonderful cruise.” When aged 21, she somehow managed to
obtain a re-issued birth certificate giving her name as 'Georgia
Ziadie', and (far more critically) stating her sex as being 'Female'.
In 1974, age 25, she married Lord Colin Ivar Campbell, the son of Ian Campbell,
11th Duke of Argyll; the marriage was annulled just a year later when Lord Campbell
discovered that his wife was "raised as a boy" and he "couldn't touch
her" after this, but she continues
to use the title and surname from the marriage. The
studies that have been done suggest that most intersex people are
satisfied with the gender that they were assigned at a young age.
However
far more work needs to be done before it can be certain that early genital
surgery on an intersex 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 intersex 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
The
Unkindest Cut, by Katherine A. Mason, Advocate (New Haven),
April 3, 2001 Surgical
Treatment of Infants with Ambiguous Genitalia: Deficiencies in the
Standard of Care and Informed Consent by Hazel Glenn Beh and
Milton Diamond. First published in: Michigan Journal of Gender &
Law, Vol. 7, No. 1, 2000, pp. 1-63 "Ambiguous
Sex" - or Ambivalent Medicine?, by Alice Domurat Dreger, Into
the Hands of Babes, By Melissa Hendricks, John Hopkins
Magazine, September 2000 The
Hidden Gender, By Rae Fry, broadcast on the Health Report,
Radio National |
Last updated: 8 July 2003