Intersex
[Abstract] Full Text [PDF]
Introduction
One out of every two thousand births presents parents with a sudden gender
dilemma. A tradition of secrecy means most parents are totally unprepared.
Intersex people naturally
develop primary or secondary sex characteristics that do not fit
neatly into society's definitions of male or female. Many visibly intersex
people are mutilated in infancy and early childhood by doctors to make their
sex characteristics conform to their idea of what normal bodies should look
like. Intersex people are relatively common, although the society's denial of
their existence has allowed very little room for intersexuality to be
discussed publicly.
Hermaphrodite: An old medical term describing
intersex people. Many intersex activists reject this word
due to the stigmatization arising from its mythical roots and the abuse that
medical professionals inflicted on them under this label.
Ambiguous genitalia: Many intersex
activists contest the use of this phrase to describe their bodies because
the ambiguity is with the society's definition of male and female rather than
their bodies.
True hermaphrodite and Male- or Female-
Pseudo-Hermaphrodite: Medical sub-classification of intersex people,
also known as "herm, merm and ferm." Aside from the fact these
distinctions are virtually meaningless in the lives of intersex people, these
terms imply authenticity and ranking of intersex people and thus disempowering.
Berdache: Used by Western colonialists to refer to
Native American genders that they could not neatly classify into the
Eurocentric binary system of gender and sex. The contemporary language that is
accepted by Native American people who identify with these genders is the 'two-spirit'.
Intersex is a general term used for any form of congenital mixed sex anatomy.
Knowing if a child was boy or girl until
modern scans was left to the birth - now it can be detected far in advance. If
the sex of the child is uncertain and result in
tests to decide what gender to assign the child.
The child does not have to posses all the
genital parts to be intersex, but what can be termed as ambiguous genitalia -
an enlarged clitoris for example.
Sometimes a child or adult who is intersexed can look quite
unambiguous sexually, although internally their sex anatomy is mixed. This
happens, for example, with complete androgen insensitivity syndrome, where a
person has some male parts (including a Y chromosome and testes) internally,
but is quite clearly feminine on the outside. It's important to also be clear
that intersex is different from transgender in that a person with intersex is
born with mixed sex anatomy, where as a person who is transgendered is a
person who feels himself or herself to be a gender different than the one he
or she was assigned at birth. Some people who are transgendered were born
intersexed, but most were born with male or female
anatomy.
Holland
Alice
only found out she had no womb when she was 17
Alice was
17 years old when she went to the doctor to find out why she still
hadn't got her first period. He sent her on to a hospital for an
internal check.
An ultrasound
test
As the test was
being administered, she saw the technician frown; he said that the
machine didn't seem to be working, and they had better move to
another room and try another machine. Again, there seemed to be
something wrong. The technician left the room to call a doctor.
The doctor looked at the machine, frowned too, and then did an
internal check up. What he found was nothing. In Alice's body, he
found no womb, no uterus, no ovaries. Nothing. And that's how
Alice discovered she had AIS.
Androgen Insensitivity Syndrome (known as AOS in the
Netherlands) falls under the general medical condition intersex.
AIS is a condition where a person with XY chromosomes (which would
normally indicate a male, as opposed to YY which is female) is not
sensitive to androgens, so though they have an XY chromosome, they
develop in a female direction. Complete AIS means that the person
will look completely like a girl from the outside. However AIS is
only one of about 75 different intersex conditions.
Uncommon
It is not a common condition. In The Netherlands an estimated
270 women have it, though there's a good chance that number is in
fact considerably higher but remains unreported because of the
taboo that surrounds sexuality that's not considered
"normal.
|
Intersex issues are frankly discussed in
this article and media file.
(29 minutes long,
3.52mb)
Buffering times may vary - please be
patient!
Please ensure your volume
is increased!
 Click here
to open
onto your own Player
|
|
|
Some babies
are born with ambiguous genitalia, meaning either a larger than
normal clitoris or a smaller than normal penis. Ambigiuous
genitalia occur only in 10 percent of the cases of people born
with AIS, and only a small proportion of these babies grow up
wanting an operation to change their sex. This is one of the
reasons that people with an intersex condition generally dislike
being categorized as transsexuals. "Transexual people seek
the help of a doctor to have their body changed. Intersex people
seek help to get rid of the doctor who changed their body"
runs a phrase in an AIS organization's pamphlet.
Shame, secrecy and unwanted surgeries
Despite the jokey tone, there is a serious point being made.
In the past, doctors took matters into their own hands and
surgically chose a sex for the child, often without properly
consulting the parents. Petra Klene was born in 1948, a time when
medical knowledge about intersexuality was minimal. When she was
just 14 months old, a small change in her genitalia prompted her
family to bring her to the doctor. He decided that surgery was the
answer. Petra, the baby girl, was to be transformed into a baby
boy. All the parents had to do was dress her as a boy, treat her
as a boy, and, it was believed, she would grow into a boy. When
she was nine, she was started on the first of a series of
operations. There followed 15 operations in 11 years. She
was never told of her condition, and neither doctors nor parents
discussed the matter or consulted her in any way. "A telegram
[would arrive that said] I had to be in the hospital in a couple
of hours and the next day there was an operation," she says
bitterly. "Without telling me what they were doing, without
guidance, without psychiatric help, nothing, nothing."
Petra has reason to be bitter. She was forcibly raised as a
boy. "It was difficult for my parents. I liked to play with
girls, not boys. I had a high voice, almost no body hair, no male
genitalia, it was impossible for me to join peer groups, I was
very isolated and lonely and I had bad results in school."
Suicidal
By the time Petra was in her 20s she'd had enough. She decided
to stop the operations and, on the brink of suicide, left the
Netherlands. At a Buddhist monastery in Sri Lanka she finally
found some peace, consulted her abbot and was told to follow her
heart. Petra came back to the Netherlands and went back to the
doctors for a sex change operation. She submitted to yet another
round of traumatic operations so that she could go back to being
the woman she should have been.
Petra Klene has been living as a woman for more than 20 years.
She's happily married and helps counsel people with gender issues.
But does she feel 100 percent a woman? "After such a horrible
life, I feel 65 percent woman and 34 percent man – you never
forget how you were raised. It did such damage and gave such big
scars. It will never heal, never." Petra's story is a perfect
example of why gender re-assignment operations for babies have
been stopped in most of the western world.
Gone for good
"What will you say to that child when the larger part of
the clitoris was removed and the child later says ‘I want to be
a boy'? – you'll never be able to bring that back" says
Miriam, the forceful spokeperson for the AIS group in the
Netherlands.
Miriam:
intersex is not an illness
Miriam is
keen to advocate that not everyone with an intersex condition
shares Petra Klene's horrific story. "We don't see intersex
as an illness," she says. However she doesn't deny that her
intersexuality has been a hard burden to bear. "Its not easy
as a young woman to hear that you will never have children, to go
to doctors so often, to be on daily medication." But the
hardest thing of all according to her is the shroud of secrecy and
misunderstanding that has surrounded this condition for so long.
"Its not the intersex condition that's a problem, it's the
strange relationship I have with my parents and the medical
profession. They were not honest with me . . . and I still don't
trust doctors at this stage."
That secrecy is dissolving, however, and sexuality doesn't bear
the weight of shame and scandal it once did. Because information
is now so easily available through the Internet, children with the
condition are no longer shut out of the loop. They're told of
their condition in stages as they're able to understand it – its
full medical, biological and psychological implications. And it is
only when society is armed with the whole truth that Petra's
sufferings or the half-truths forced on people like Miriam will
cease.
Information for Parents with Intersex
Babies and Children
When a baby or child is recognized to have an intersex condition, it can be
quite traumatic for the parents. Parents want their children to have happy, 'normal' lives, and they worry that a child with intersex cannot do
so. All parents imagine their children's futures, and parents of children with
intersex conditions can have a very hard time doing that; they're not sure
whether to imagine that child will marry, whether the child will give them
grandchildren. As a consequence, the parents' identities also become confused
and uncomfortable.
Until recently, the dominant medical system for treating
intersex treated parents as a means to an end. Psychologist John Money at
Johns Hopkins University developed that system which assumed gender is all a
matter of nurture, not nature. Money claimed that any child could be turned
into any gender as long as the parents believed in the assigned gender. As a
consequence, doctors told parents of children with intersex what gender a
child was and then doctors scheduled intensive 'normalizing'
surgeries to try to make the genitals look clearly female or male (usually
female). Confusion and distress on the part of the parents and child were
downplayed, because doctors believed the only real issue was the gender
assignment, and that once gender was assigned and sex reassignment
surgeries were started, they had to stay the course no matter what. They
assumed a clear gender identity would alleviate all parental distress and
therefore all distress on the part of the child, and that
"normalizing" procedures would provide a clear gender identity.
Money claimed to prove this system worked with a case known as
"John/Joan." After a pediatrician accidentally destroyed the penis
of an identical twin boy (who was not intersexed) during circumcision at eight
months, Money recommended to the parents that the child be made into a girl.
They decided to take his advice and for years Money claimed the sex
reassignment had worked. We now know that that child, who grew up to take the
name David Reimer, was never happy as a girl. John Colapinto tells his story
including his attempts to rebuild what he could of the male anatomy
that was taken from him in.
What, then, should parents of a child with an intersex condition know? The
first thing they should know is that ambiguous genitalia are not
diseased. They just look different. Unusual genitalia may signal an underlying
metabolic concern, like Congenital Adrenal Hyperplasia (CAH), but doctors can
usually treat metabolic concerns without doing surgery on the child's
genitalia. Many babies born with intersex conditions are perfectly healthy and
do not require any medical intervention other than diagnostic tests. Parents
therefore need to press doctors to make clear to them which parts of their
child's anatomy involve threats to their child's physical well-being, and
which are psychosocial concerns. They should also press doctors to explain
which interventions must be done on an emergency basis (for example, when a
child is born without any urinary opening) and which can be put off until
parents have had the time to calm down, to get to know their own baby and
other parents in similar situations, and to explore all of their options. They
also should actively request referrals to professional and peer counselors, so
that they can express, in a supportive and unhurried environment, their own
feelings of confusion, grief, shame, and fear.
Parents should also know that doctors are likely to seek from them consent
for 'normalizing' genital surgeries when the child is still very
young, because many doctors believe that this will make the parents' distress
end and will prevent the child from feeling any distress. In fact, these
surgeries carry great risks, including risks to genital sensation (which the
child will need later for a healthy sex life), continence, fertility, and
life. The risks should not be downplayed, particularly in consideration of the
fact that 'normalizing' surgeries are not medically necessary for
physical well being. One baby girl who ended up in
intensive care on a ventilator because of complications from an elective 'normalizing' surgery. Many parents have expressed
disappointment in the surgeries after having discovered that the surgeries
can't really give their child 'normal' looking genitals. Some
surgeries require that parents do follow-up care that parents may find very
troubling. For example, 'vaginoplasty'" which lengthen or build
vaginas out of skin or pieces of colon often require that parents regularly
dilate the new vagina with a lubricated stent. If parents had understood that that was what would be involved in home
follow-up care, many would have waited until their child was old enough to
consent to and do the dilations herself. Parents also need to know that the
few follow-up studies available show that 'normalizing' genital
surgeries done in infancy or early childhood seem to have a poor long-term
success rate. That is why more and more doctors are recommending that parents
put off these surgeries until puberty, when the surgeries tend to be more
successful and when children can provide input on the decision-making process.
It is also why parents should press doctors to explain to them exactly what scientific
follow-up studies can or can't tell them about the success of these
interventions.
Some studies
Parents should also be aware that legal scholars have recently shown that
parents of children with intersex conditions are often not fully informed
before they consent to 'normalizing' surgeries. In the recent past
they have not been told, for example, that the claim that gender comes from
nurture has fallen into serious question, and that doctors cannot actually
know what gender a child will end up feeling. As a consequence some parents
have consented to have their micropenis boys turned into girls, only to
discover later that studies by Dr. William Reiner at Johns Hopkins University
have shown that many children born with micropenis ultimately take on the male
gender identity regardless of having been raised as girls with surgically 'feminized'
genitalia. Parents have also not been adequately
informed about which procedures were essentially elective. Finally, parents
have not been advised of what was and was not known about the long-term
effects of this system of treatment.
It is important that parents of children with intersex conditions press
doctors to tell them the exact diagnosis once the doctors know it. This will
enable the parents to do their own research, and to find other parents with
similar experiences, as well as understand their options.
Parents of any child with a complex
condition--should ask for copies of the child's medical records on a regular
basis. According to an article in December 2001, in the British Medical
Journal, "a paternalistic policy of withholding the diagnosis is still
practiced by some clinicians" in intersex cases. These physicians
mistakenly believe that shielding parents from exact diagnoses in intersex
cases protects parents and children from unnecessary harm. A few also
mistakenly believe this practice is ethical and legal; it is neither.
A recent article in the British Journal of Urology notes that photographs
taken of them as children and later published in medical journals and
textbooks have unintentionally harmed some people with intersex conditions.
Parents should guard against unnecessary photographing of their children as
well as unnecessary display to medical students and residents, particularly as
the child becomes old enough to understand and remember these incidents. While
teaching hospitals will be inclined to use the opportunity of caring for a
child with intersex for educational purposes, parents should resist any
encounter that does not directly benefit their child, given the risks. The
trauma to parents and child that can arise from repeated display of a child's
genitalia to strangers should not be underestimated.
When facing the possibility of intersex, parents should know that every
child can and should be assigned a gender as boy or girl and that doing so
does not require any surgery. Gender assignment is accomplished for every
child (intersexed or not) through the social and legal labeling of a child
as boy or girl.
In intersex cases, doctors and parents can work together to
try to figure out what gender a child is likely to feel given that particular
child's anatomy and physiology, given what doctors know from scientific
studies of outcomes in similar cases, and given how the parents see that
child's gender. The parents will have to recognize that there is a small but
real chance that gender assignment may not hold, that the child may express
the other gender later, and that this is why it is best to leave the child's
anatomy intact as much as possible. Removing parts doesn't remove the
possibility that the child may change gender later; it only makes it a lot
harder for the child to do what she or he wants or needs later.
When parents are making decisions on behalf of a child with intersex, they
should keep in mind what the sociologist Suzanne Kessler has shown: Kessler
asked a group of men whether, if they had been born with "micropenis,"
they would have wanted to be turned into girls, and she asked a group of women
whether, if they had been born with large clitorises, they would have wanted
to have their clitorises surgically shortened. The vast majority of men said
they would rather grow up with micropenis than as girls. The vast majority of
women said they would have wanted to have their large clitorises left alone.
But asked what they would choose for a child in the same situation,
many said they would opt to turn micropenis boys into girls and would opt for
cosmetic surgeries on girls' large clitorises. The reason behind the different
answers is the compassion we all feel for children. We all want to protect
children from hardship. But the key to keep in mind is what the child would
likely want for himself or herself. Kessler's study as well as interviews with
adults with intersex (both those who were subject to "normalizing"
surgeries and those who were raised without "normalizing" surgeries)
indicates that the vast majority of people want their parents to let them
decide for themselves whether to risk health, appearance, genital sensation,
continence, fertility, and life. Putting off the surgeries until at least
puberty allows the child to have input on the decision, and it seems to
provide for better outcomes as well as providing for the possibility that
surgical techniques and outcome data will improve in the interim.
Finally, parents should know that intersex does not have to be treated with
shame and secrecy. The social (and sometimes also the medical) system by which
we treat parents of "different" children as pitiful or shameful is a
system that harms those parents and children. Intersex is a natural
variation--we see it in all animal species and throughout history. People with
intersex can grow up as healthy boys and girls, men and women. Their best shot
at doing so is when their parents are not made to feel ashamed of themselves
or their children. Unfortunately, "normalizing" procedures like
cosmetic genital surgeries sometimes inadvertently make parents and children
feel unnecessary shame. Many adults I know with intersex conditions feel that
their parents' decision to change their genitals for cosmetic reasons means
that their parents saw them as freaks, even though that isn't what their
parents intended. Dealing openly with intersex is the best defense against the
shame-game. Parents should therefore have access to professional and peer
support as they learn to talk with their child about intersex in an open,
honest, and accurate manner. Parents will also find that connecting their
child to peers with intersex will allow their child another opportunity to
talk openly about the challenges of living with intersex. Talking this through
undoes the shame and secrecy that pretty much everyone involved agrees has
historically been the most harmful aspect of intersex.
No one is suggesting that in cases of intersex we
'do nothing'
But parents need to know that intersex is primarily a psychosocial concern,
and that it is therefore best treated with substantial and continuous
psychosocial support, professional and peer. The bottom line is that children
with intersex conditions and their parents deserve honesty, respect, and
support. But we are not yet at the point where that is automatically provided.
We all need to do our part, as doctors, parents, neighbors, and teachers, to
demystify intersex and see to it that parents of children with intersex
conditions know the same pride and joy of parenting as others.
Intersex Case Study
First Published in Synapse,
University of California, San Francisco Medical School.
Cheryl Chase's clitoris was surgically removed when she was 18 months old. She appears to be a clean cut woman in her forties, and as she speaks about the series of operations that were performed on her, she fills the room with a sense of her loss and anger. Chase was born a true hermaphrodite, a condition in which the gonads have elements of both ovarian and testicular tissue. The testosterone produced by the testicular elements in her gonads caused her clitoris to be unusually large, resembling a small penis. Like others recognized at birth to have ambiguous genitalia, or whose genitals do not match their chromosomal sex, she was classified as an intersex individual.
Initially doctors thought Chase should be reared as a boy, and she was named Charlie. But further consultation with different doctors led to the decision to raise her as a girl. She was renamed Cheryl. Her parents decided, under medical advice, to have her clitoris removed, in order to "normalize" her appearance toward that of a girl. This clitorectomy was meant to help her develop a female gender identity. When she was eight, doctors removed the testicular portion of her gonads, to reduce the risk they would undergo cellular changes that could lead to cancer. At no time was she truthfully told the purpose of the surgeries.
At the age of 35, Chase had a nervous breakdown. Although she had been able to access her medical records in her early 20s, support groups in which to discuss her condition did not exist. The years of secrecy, unexplained surgeries, and sexual dysfunction caused by removal of her clitoris had taken a huge toll on her. "Until I was 35, I was ashamed and terrified that people would find out that I was different than a woman. Like many, supposedly happy and successful patients, I was silenced."
Instead of retreating from the pain of her experience, she took the revolutionary step of founding the Intersex Society of North America (ISNA), a San Francisco based peer support and advocacy group. Initially just a loose association on the internet, ISNA now has 1,400 members, holds retreats for intersex people, has produced a video, lobbies, holds demonstrations, maintains a website, and puts intersex people in touch with each other throughout North America. The latter may be their most important function. "Every intersex person we have met with has had a common experience, in that it was immensely transformative and positive for them to meet other people like themselves," says Chase. Members of the group spoke to UCSF medical students last week, to make the case for changes in current medical practices.
Intersex individuals demonstrating outside a recent American Academy of Pediatrics meeting.
Causes
There are many conditions that can lead to intersex status. Chase's condition is rare, but when all causes of intersex are considered, as many as one in 2,000 babies are affected. In the embryo, the external genital structures are originally the same in males and females. Exposure to testosterone, the male hormone, causes differentiation into a penis and scrotum. Lack of testosterone, as in females, allows the tissue to develop along a 'default' pathway, in which a clitoris and labia are formed. Inside the body, a portion of the Y chromosome, found in males, causes the primitive gonads to become testes. The testes are the source of the testosterone which causes the external genitals to differentiate in a male pattern. Testosterone also promotes formation of the prostate, and other internal male reproductive structures.
In addition to the steroid testosterone, the testes make a peptide hormone which inhibits the formation of internal female reproductive structures such as the uterus and upper two-thirds of the vagina. Various alterations along this pathway can lead to intersexuality. Common ones include partial or complete insensitivity of the tissue to testosterone, inadequate production of testosterone, lack of the testes-determining region of the Y chromosome in a male, or its presence in a female, and malformations due to exposure of the fetus in utero to certain drugs.
The cause of another type of intersex, severe hypospadia, is not understood. In this condition, seen in males, the urethral meatus (from which urine exits) is at the base of the penis, and the scrotum resembles the female labia. The incidence of this condition is increasing, for reasons that are not known.
Medical Treatment
Current medical treatment for intersex individuals is in a state of flux. Recently The Journal of Clinical Ethics devoted an entire issue to the subject, ultimately recommending major changes. At present, infants born with obviously ambiguous genitals undergo many tests (chromosomal, hormonal, and anatomical) to determine what sex they will be assigned. The decision is based on criteria such as the ability to create cosmetically unambiguous and functional genitals with the tissue present. The term 'functional' varies in meaning, but usually refers to the ability to use the genitals for penetrative intercourse. In cases where future fertility is possible, this too is considered. A multidiscipinary team is involved in the decision. Once a determination is made, infants are named, and a birth certificate filed. The parents are instructed to treat the infant as being of the specified sex, without any ambiguity. Surgery is performed before the age of 18 months to make the genitals match, as closely as possible, the assigned sex. It is this last step that ISNA most wants to change.
Associate Professor of Urology and Pediatrics Laurence Baskin's voice takes on a notable chill when ISNA's visit is mentioned. "I honestly feel sorry for those people who feel mutilated by their surgeries. They need counseling to get over their loss. Their surgeries were performed years ago, and the nerve supply wasn't understood. For the three people who spoke to you, my guess is there are 97 who are happy. But they're not going to be out talking to medical students."
Baskin admits that surgical technique in the past was not optimal. "The surgery that was done was done by very well intended physicians, but we didn't understand the nerve supply well. We started to understand the nerve supply [to the clitoris] 10 years ago."
Intersex individual Howard Devore, PhD, is a practicing San Francisco psychologist who works with intersex patients. He disputes the notion that things have improved much. Devore was born with severe hypospadia. "Maybe a primary [less severe] hypospadia can be fixed in two or three surgeries. I've had 16. There's going to be fistulation over time. There's going to be scarring and stricture formation and loss of sensation. No scar tissue is as flexible as skin. There's no way they can deny that. The 'informed consent' they give parents to sign is totally unrealistic. One of our main issues is that parents are told that after a few surgeries, their children will have 'normal' genitals."
Professor of Pediatric Endocrinology Melvin Grumbach is much more optimistic. Speaking from an office cluttered with journals and papers on this subject in which he is a renowned expert, he cites the advantages of microsurgery, unavailable when Chase's clitoris was removed. "When I was a fellow at Hopkins, they were doing clitorectomy on girls with congenital adrenal hyperplasia (CAH) [in which the adrenals produce testosterone in utero that masculinizes the external genitalia], and I couldn't bear it. When I was at Columbia, clitoral recessions where developed. We studied four women with CAH, and three out of the four had had repairs, and they were all sexually functional and happy. Two of them had children."
Even the terminology is a battleground in the current debate. Chase says, "We don't see a difference between clitorectomy and clitoral recession [in which the bulk of the clitoris is reduced by removal of part of the erectile bodies of the clitoral shaft]. Kinsey showed that women masturbate by stimulating the shaft of the clitoris, not the glans. Recession removes the shaft."
Chase isn't surprised by Grumbach's and Baskin's faith in new techniques and technology. "They are always saying these new techniques are better, but there are no long-term outcome studies. I don't think doctors who are doing this are setting out to hurt their patients. They are confronted with parents who are upset. Surgeons are not trained to deal with parents who are upset. They are trained to 'fix' things. When people like me grow up and say, 'this hurt me,' they don't want to hear it, because they would have to see how they had hurt patients, and they would have to admit their impotence in addressing this by surgery."
A brief literature search shows that surgeons have persisted in using language that suggests optimal outcomes with relatively few procedures necessary. In a 1998 article entitled, "Feminizing Genitoplasty: State of the Art," author Rinke states, "Today's efforts achieve near normal cosmetic and functional results." Another author, Greenfield, writing about repair of severe hypospadias, promotes a two-stage procedure in which he claims, "All children had excellent cosmetic and functional outcomes." This is despite a 21% incidence of diverticula formation, as well as strictures and fistulas in some patients. Perhaps more important, there is no longterm follow-up of these patients. Average patient age in the hypospadia study was two months. Obviously, sexual function was not one of the "functional outcomes" considered.
Chase is quick to point out the lack of longitudinal study of these patients. "There is a principle in medicine -- do no harm. They [surgeons] don't know what effect their drastic, invasive, irreversible interventions are having. Given that they don't have knowledge about the effect of their interventions, it's unethical to do them on unconsenting infants."
Endocrinologist Grumbach is skeptical of this viewpoint. "If someone is telling you, 'you shouldn't modify the external genitalia,' well, the parents wouldn't stand for it. They want it repaired!"
Baskin is more critical; yet he too he ackowledges that it can be "very disturbing to parents" to give birth to an infant who is intersex.
"It is very disturbing," agrees Chase. "And when people are really disturbed, it's not the time to make major, irreversible decisions." Instead, ISNA proposes that the parents receive counseling, and are put in contact with other parents of intersex children. They believe that the child should be assigned a sex, given a name that corresponds to the sex, and raised with age appropriate explanations of their condition. "The child will assert their gender identity between the ages of six and ten," notes Devore.
Chase agrees, "If that is different than the assigned sex, their name and sex assignment can be changed. This will be less frightening if the children and parents have been involved in groups where other children have changed gender identity."
Ehical Considerations
The ethical issue most prominent in this debate is that of patient autonomy -- the right of patients to decide for themselves what treatments they receive. ISNA seeks to maximize patient autonomy by delaying surgery. The traditional treatment model holds that delaying treatment would lead to psychological scarring and difficulty in accepting the assigned gender. Baskin believes that it is appropriate for parents to consent to surgery on behalf of their infants. "Parents make decisions for their kids. That's what parents do."
On the other side of the divide, Chase was adamant that the surgery is being done for the psychological adjustment of the parents, which strikes her and other adult intersexes as horribly wrong. "The infant is the patient, not the parents! Gender is not so fragile that cosmetic surgery needs to be done early. Gender identity would not be undermined by asking the child about it."
"The idea of surgery is to make the child normal, with a capital 'N'," reflects Chase. "But our experience as adult intersex people is that these kids are not going to be 'normal.' The genitals are not going to look the same as those of other kids. And when an incredible amount of money and time has been invested in making them 'normal,' and they don't feel that way, they'll feel terrible. We all wish we had the genitals we were born with back. We're not saying this would have been without emotional difficulty, but it would have been better than what they did to us."
ISNA also takes issue with the criteria through which sex is assigned. "In the case of congenital adrenal hyperplasia, the excuse for the surgery is that the girl who has a vagina created will be fertile as a woman. But if you had to choose between fertility and sexual function, which would you choose?"
Baskin is horrified by this attitude. "The majority of these patients [with congenital adrenal hyperplasia] have done well. They have families. They have kids. They would never be fertile as a male. They would have a small, dysfunctional penis. If you leave a big clitoris, they [patients] don't look like a girl. Most patients don't want a clitoris that looks like a penis. People want to look normal. I am trying to help kids."
After all the debate and division, it's reassuring to hear that the two sides do share a few square yards of common ground. Everyone agrees that patients and parents need more psychosocial support. But no one agrees on why that care has not been forthcoming.
Grumbach believes that groups like ISNA have changed treatment in positive ways. For example, patients used to be subject to repeated medical photography of their genitals, a practice which made many patients feel stigmatized and uncomfortable. "They've pointed out the deficiencies in our care of patients. Sensitivity has gone up a couple of logs." Like ISNA, Grumbach and Baskin bemoan the lack of psychotherapy. "A good psychological social worker would be a tremendous help. It's hard to get long-term psychiatry. We [the pediatric endocrinologists] try to provide support. That is one of the real deficiencies in care."
Baskin agrees that mental health care is, "a critical part of their treatment," but admits that no services are consistently available here at UCSF. He believes this is due to HMO and insurance companies who are unwilling to pay for treatment. Grumbach thinks that another important factor is lack of psychiatrists with expertise in the area of intersex.
Back at ISNA, these attitudes prompt the type of frustration typical of patients who have been denied care. "What are they doing about it [the lack of psychological counseling]? If you had patients dropping dead from heart attacks, you wouldn't say there's no money for cardiologists. You would say our ethical duty as care providers is to get these people the help they need. Intersexuality is actually life-threatening, because the rate of suicidality is high," maintains Chase.
Psychologist Devore, who studied intersex individuals at Hopkins, scoffs at the idea that trained counselors aren't available. "The parents need counseling. They need to be told that this [intersex] is a way a person can be, even though it is not what the parents expected. There are psychologists trained in this. We have developed a referral list. ISNA is also available for peer support."
The battle of the intersexes is far from over. Each side concedes some benefits received from the other. Intersex individuals are grateful for the immense research done on the causes of intersex conditions. Doctors acknowledge that intersex adults have shown them how discussing the patient's condition openly yields better results than the previous protocol of hiding it from them with secrets and half-truths. Some doctors are talking to adult intersex individuals openly. Medical practice has been influenced by the debate itself, but the anger and defensiveness that have been created have left a chasm across which only a few doctors will publicly walk. Perhaps the next step in improving treatment will be the one taken when doctors and intersex adults sit down together to discuss methods for the scientific evaluation of patient care as it exists now and as it has been proposed.
Help
and info
The Transgender Zone is not responsible
for the content of third party sites.
Organisations
Adrenal Hyperplasia Network
Tel: 01543 252961
E-mail: webmaster@ahn.org.uk
Website: www.ahn.org.uk
A UK support group that carries out research and provides e-mail support,
information and organises meetings for adults with Adrenal Hyperplasia.
Androgen Insensitivity Syndrome Support
Group (AISSG)
Website: www.medhelp.org/www/ais
Worldwide support group, originating in the UK, providing information/support
to adults and families affected by intersex conditions such as AIS and similar
conditions. Personal stories, a discussion board as well as useful medical
information is available online.
Congenital Adrenal Hyperplasia UK Support
Group (CAHG)
Tel: 01525 717536
E-mail: webmaster@cah.org.uk
Website: www.cah.org.uk
Provides support, newsletters, information and meetings for families and
people with CAH. Aims to raise awareness of the condition with the public and
the medical profession.
Intersex Society of North America
4500 9th Ave NE, Suite 300
Seattle WA 98105
USA
Tel: 00 1 206 633 6077 (number is in USA)
E-Mail: info@isna.org
Website: www.isna.org
A public awareness, education, and advocacy organisation devoted to systemic
change to end shame, secrecy, and unwanted surgeries for children born with
atypical sexual or reproductive anatomies. They will accept enquiries via
e-mail, but it's necessary to register on their website first.
Klinefelter Organisation
234 Turton Road
Bolton BL2 3EE
E-mail: ko.info@talk21.com
Website: www.klinefelter.org.uk
A membership-based organisation that provides information about Klinefelter's
Syndrome, plus a medical links section. Membership offers a quarterly
newsletter and access to meetings.
Klinefelter's Syndrome Association UK
56 Little Yeldham Road
Little Yeldham
Halstead
Essex CO9 4QT
Helpline: 0845 2300047 (No later than 10pm please)
E-mail: coordinator@ksa-uk.co.uk
(family enquiries and leaflet requests)
E-mail: adults@ksa-uk.co.uk (adult
and teenager enquiries and leaflet requests)
Website: www.ksa-uk.co.uk
Offers support to adults and their partners as well as children and their
families who have Klinefelter's Syndrome and its variants.
Middlesex Clinic London (part of UCLH)
Website: www.uclh.org/services/reprodev/index.shtml
NHS clinic which provides information, diagnosis and clinical care for a broad
range of conditions including Complete and Partial Androgen Insensitivity
Syndrome, Congenital Adrenal Hyperplasia (CAH), Swyers syndrome, Vaginal
Agenesis (Mayer-Rokitansky-Kuster-Hauser syndrome) and any variations of
development of the genital system or intersex conditions. The website explains
how to get a referral and also lists support groups.
Rosa Group
E-mail: rosagroup@yahoo.co.uk
UK support group for women with an absent (or underdeveloped) vagina or womb.
This is also called Rokitansky syndrome or MRKH (Mayer-Rokitansky-Kuster-Hauser)
Syndrome. Initial contact is by e-mail with phone contact/personal meetings a
possible later option.
The Turner Syndrome Support Society (UK)
12 Irving Quadrant
Hardgate
Clydebank G81 6AZ
Tel: 01389 380385 (Mon-Fri 9am-5pm)
Fax: 01389 380384
E-mail: turner.syndrome@tss.org.uk
Website: www.tss.org.uk
Give support and information to those with Turner Syndrome, their families,
friends and health professionals.
UK Intersex Association
E-mail1: info@ukia.co.uk
E-mail2: jhl@ukia.co.uk
E-mail3: ukia@mairimac.demon.co.uk
Website: www.ukia.co.uk
An education, advocacy and campaigning organisation which works on behalf of
people with gender identity issues. A telephone helpline, fax and a postal
address may be available for those who make initial contact via e-mail. The
site has an appraisal of surgery and gender assignment in an essay by Milton
Diamond.
XY Turners
E-mail: info@xyxo.org
Website: www.xyxo.org
USA group providing information, support and networking for parents and people
with Turner's syndrome with some Y material, mixed gonadal dysgenesis and XY-XO
diagnosed conditions. The site lists articles and has links to relevant
journals.
Websites
Guide to Intersex and Trans Terminologies
www.survivorproject.org/basic.html
Part of the survivor project, this article looks at the ways in which people
want to be described, in a way that is not offensive. The site has other
articles on the oppression of trans and intersex people, and the violence they
have endured.
How is Sex Determined?
www.pbs.org/wgbh/nova/gender/determined.html
Nice little animated Flash movie from the US filmmakers PBS. This interactive
feature illustrates the astonishing changes that occur during the first 16
weeks of human development.
Intersex
www.fathermag.com/206/intersex
Easy to understand article that explains what to expect if your child is born
intersex. The writer is Alice Dreger, author of the book 'Hermaphrodites and
the Medical Invention of Sex'.
Intersexual definition
http://en.wikipedia.org/wiki/Intersex
Gives a definition of intersexuality and many of the related conditions, and
takes a look at the wider issues.
John Hopkins University School of Medicine
www.hopkinsmedicine.org/pediatricendocrinology/patient.html
This American site has some useful information that can be read online or
downloaded. Subjects covered are 'Syndromes of Abnormal Sex Differentiation'
and 'Congenital Adrenal Hyperplasia'.
Management of Intersexuality
www.ukia.co.uk/diamond/diaguide.htm
An up-to-date appraisal of surgery and gender assignment in an essay by Milton
Diamond.
Tayside Hospital
www.dundee.ac.uk/medther/tayendoweb/congenital_adrenal_hyperplasia.htm
Lots of information and advice on Congenital Adrenal Hyperplasia (CAH) in
adults.
Citation:
Human Rights Section : Synapse, University of
California, San Francisco Medical School.
Prof. Dr. Peggy
T. Cohen-Kettenis Head of the Gender Team Free University Hospital Amsterdam.
