Disorders_of_Sex_Development

Handbook for Parents is transphobic and homophobic

The Consortium for the Management of Disorders of Sex Development in Children has published a handbook specifically for parents of children born intersexed or as the Consortium prefers to call them – disordered in their sex development. It is very revealing that the consortium has published handbooks for doctors and for parents but nothing for the actual child. There is a reason for this. The Consortium serves the interests of the two groups just mentioned at the expense of the child being managed.

This Handbook for Parents is very misleading and gives parents a lot of misinformation about intersexed children. It minimizes the suffering and trauma that many have reported over the years about being assigned the wrong gender and also being persecuted for being lesbian or gay. The propaganda in this handbook repeatedly brushes aside the serious issues of transphobia and homophobia which many of intersexed people have experienced from their earliest years and throughout life. The handbook is not about making intersexed children actually feel secure and comfortable with themselves but more about assuring the parents that their intersexed children will most likely NOT be transsexual or homosexual.

The Consortium has heralded these publications as advances in the healthcare of intersex children and not about "gender". However, if one takes the time to read the Handbook for Parents, that is all it is about – gender. And how could it be about much of anything else? The whole reason for combining a lot of different conditions which have nothing in common medically under the umbrella term “disorder of sex development” is not to treat real health conditions of intersexed children but to relieve the sufferings and anxieties that gender "ambiguity" provokes within society.

The introduction of the Handbook for Parents makes this very clear:

‘’This handbook does not include a large amount of medical information about your child’s specific condition. That is because there are many conditions that count as disorders of sex development (DSDs), so it would be impossible for us to cover them all. Instead, this book is meant to give you some basic information about sex and gender development.’’

The actual research on intersexed children is not truthfully dealt with in this handbook and one needs to ask why. The actual experiences of thousands of intersexed adults are not dealt with either. Many intersexed adults have denounced not only the early, barbaric treatments but also the very reason for the treatments – to assign a gender without consent or input from the child. Many have also denounced the homophobia that they were subjected to in childhood and later in life. Their narratives and personal experiences are almost invisible and actually trivialized in this handbook so as to give comfort to parents who most likely do not want homosexual or transsexual children.

Parents should be told truthfully that their intersex child is more likely to reject the imposed sex assignment and they should be prepared for just how difficult it will be in most states to do this, if not outright impossible. They should be prepared to cope with the intense trauma and psychological damage that adults have reported who are transsexual or intersexed and assigned the wrong sex. They should be prepared to deal with the very large number of intersexed people who have felt very damaged by the gender they were assigned and there are many of them and more and more are coming forward each day.

We also know that intersexed adults are much more likely to be lesbian or gay and this should not be trivialized or brushed off as it is in this manual. The mistreatment that young children are subjected to who are homosexual is not dealt with adequately and since the parents are usually heterosexual, they are probably not able to understand the long-term damage that many lesbians and gays have reported from such abusive treatment and prejudice they experienced growing up.

One of the most glaring contradictions between the handbook for parents and the handbook for doctors of intersexed infants is rooted in the very transphobia which permeates these documents. The Handbook for Parents repeatedly states that we do not know what determines a child’s gender identity. The Handbook for Doctors repeatedly assures other doctors who are assigning the gender of intersex infants that they can do this quite easily by simply following the guidelines based on the intersex condition of the infant. How could we have no clue what determines gender identity on the one hand and on the other be so sure that doctors can determine the gender arbitrarily by following the guidelines of the DSD experts? Well, it is quite simple. It is always the child who is disordered in these handbooks. If the intersex child rejects the arbitrary sex assignment, they have another disorder. What started out as a disorder of the child’s sex has become a disorder of the child’s gender and the doctors are still totally correct at all points of the treatment protocols and the child is always wrong and suffering from a disorder.

Another interesting transphobic detail, other than constantly asserting that intersex children almost never reject their sex assignment, is expressed when we read that in very rare cases the child may grow up and seek a sex change along with surgical and hormone treatments. Nowhere does this expert mention the most likely fact that the adult had already been altered in childhood without consent. An interesting omission because these earlier procedures can have severe consequences later in life by totally altering the genitalia and sensitive tissue and/or hormonal balance making adult reassignment much more difficult.

This document does not prepare parents for the problems that normalization often causes such as post traumatic stress and other psychological damage to the child. What is so tragic is that in this handbook for parents the disorder is always in the child and the parents are given the false impression that all will be well, i.e., that most likely their child will not be gay or trans. Many intersexed adults feel that the parents would be better served by learning to deal with their own prejudices if they have any and embracing the richness of identities within the intersex community. Those identities are conspicuously absent in this handbook because the subtext of homophobia and transphobia make it almost impossible to not think that part of the normalization process is to prevent other “disorders” also.

New Guidelines for Sex Development Disorders - Parody

Sci-Fi by Curtis E. Hinkle

Release Date: Sept. 19, 2006

Planet Normalis Hermaphroditus

One particular planet in our galaxy has been plagued recently by more and more births of children who differentiate sexually into extreme male or female and this has caused the doctors and parents who are all hermaphrodites to study the underlying causes of this abnormality within their population. As a result, the doctors and parents have just announced the publication of new guidelines for the management of children born with disorders of sex differentiation, also known as DSD’s. The goal of the Consortium, a group of hermaphrodite doctors who wish to help male and female children by making them appear hermaphroditic, is to normalize these children so as to help both their parents who are hermaphrodites and the children themselves by making it possible for them to fit into a unisex society.

Sept. 19, 2006 — A consensus statement published in the September issue of the Archives of Disorders of early Childhood reviews the management of sex differentiation disorders in children.

"The birth of a child that is not a hermaphrodite prompts a long term management strategy that involves a myriad of professionals working with the family," writes Ian A. Phooey, MD, and colleagues from the Consensus Group from the Department of Pediatrics, University of Juno, Confederation Galactica.

"The initial contact with the parents of a child with a DSD is important, as first impressions from these encounters often persist," the panel writes. "A key point to emphasize is that the DSD child has the potential to become a well adjusted, functional member of society and pseudo-hermaphrodite who for all intents and purposes will be visibly indistinguishable from a true hermaphrodite."

Clinical evaluation should include family and prenatal history, general physical examination to detect any associated dysmorphic features, and assessment of the genital anatomy in comparison with published norms typical for hermaphrodites. Features suggesting DSD include overt genital absence of a phalloclit or a vaginal opening, a phalloclit that is too long or too short and gonads which are not mixed. The underlying causes could be a result of insensitivity to estrotestrogen and/or a lack of an extra X chromosome, making them XX or XY instead of XXY.

They have come to the following conclusions:

- All children must be legally hermaphrodites and be normalized to look like hermaphrodites.

- All phalloclits which are more than one inch long will be surgically corrected to appear normal.

- All phalloclits that are shorter than 2 centimeters will be hormonally corrected by testosterone injections.

- Any child born without a vaginal opening will be surgically corrected.

- In the end, all children will have phalloclits and vaginas and will be ready to participate in a unisex society.

The treatments to maintain health and normalization will need to be life long and any identities that do not conform to intergender (or hermaphroditic identity development) will be treated as a gender identity disorder and a specialist will help the children and adults develop a healthy hermaphroditic gender identity (intergender) so as to avoid extreme male and female identities which are bipolar disorder deviations.

The local Male and Female Human Rights Association on the planet heralded this as an advance in health care for all children who were born with a male or female sex differentiation disorder. Some splinter groups of males and females who actually are much bigger than the MFHRA are declaring this to be a violation of their human rights and demand to be accepted as the males and females they are.

The doctors and parents laughed at such a silly notion. The very idea - to let THOSE people have a say in our planetary affairs.

Medical Fraud and Quackery (Satire)

A fable by Curtis E. Hinkle

Imagine a world in which people were only allowed to have blonde or brown hair. The inhabitants of this world are totally convinced that all people can be divided into only two categories – those with blonde hair and those with brown hair. This is a myth but one that is so entrenched in the minds of the inhabitants that when a child is born with orange hair, they simply insist that the child’s hair really is either blonde or brown and they need to have experts from the medical community to help them diagnose what condition has resulted in the child’s disorder of hair development or DHD, formerly simply known as orange hair.

More and more orange haired people were starting to live openly without hiding their orange hair and were proclaiming that they were actually pleased with their natural color hair and resented all the prolonged enforced treatments that they had been subjected to in order to make them appear to have blonde or brown hair. A certain group called the Orange Hair Society of the Universe had been instrumental in making people with orange hair feel they had some right to be who they were.

As the years went by, the people in OHSU started insisting that they really were blonde and brown haired people and that in fact very few people born with orange hair actually identified as orange-haired people. They later decided that it would be better to do away with the very term used in the name of their organization – Orange Hair – and replace it with the term DHD – Disorder of Hair Development, but keep the name of the organization the same.

Many people with orange hair were very disturbed by this new terminology which made their hair color an illness and a disorder to be treated in childhood, something they had been working to change. Those who objected to this new disorder concept also felt that this would make children with orange hair even more ashamed and likely to want to hide who they were in a society structured only to accommodate people with blonde or brown hair.

The OHSU started selling guidelines that medical quacks had come up with for dying the hair of all infants born with orange hair. In this consensus statement published by a Consortium for the management of infants born with DHD’s, a whole group of very different medical illnesses and disorders were grouped together under this new medical diagnosis called a Disorder of Hair Development. The OHSU published news releases with great fanfare stating that this was a big breakthrough for the treatment of children born with orange hair and that these new guidelines written by quacks would finally help us move away from the single-minded focus on hair color and start dealing with the real health problems of children with DHD’s.

What was so fraudulent about all this was that this new diagnosis – DHD – included diseases that had nothing at all in common. It included diseases that affected a sizeable part of the population but very rarely resulted in orange hair along with other conditions that always caused infants to be born with orange hair and other conditions which might cause an individual to develop orange hair later in life. The underlying causes for developing orange hair were so different that one was left to wonder how this new diagnostic scheme could actually facilitate any sort of recommendations concerning medical care for people with this new disorder other than treating the color of the hair because that was the only thing that all these different conditions had in common. Other than that, the health needs of the individual children with DHD’s would be so different from group to group, condition to condition, that a consensus would actually be impossible because they had no real medical illnesses in common.

Adults affected with orange hair started reading the guidelines and discovered that the whole consensus was simply fraudulent in its allegations that this was about treating the real health needs of infants with orange hair. After reading through the guidelines of the Consortium, many adults with orange hair realized that the guidelines were nothing but a handbook for removing any evidence of orange hair that would be visible in public and telling the parents and legal authorities which color of hair the infant really should have – blonde or brown. Each condition which might produce an infant with orange hair was accompanied by the appropriate blonde or brown hair category and that category would be imposed on the child without consent based solely on the condition the child was born with.

The OHSU has published in it latest press release that these guidelines published by the Consortium for the management of Disorders of Hair Development in infants are not about hair color but a great step forward in the health care of orange haired people.

Cheryl Chase and Disorders of Sex Development (DSD)

A report from OII - USA, Edited by Curtis E. Hinkle

October 2, 2006

Background:

For many decades medical geneticists and endocrinology researchers have quietly conducted research and published papers on what they’ve long called “disorders of sexual differentiation” (now more commonly known as intersex conditions).

That medical terminology thus goes back to an earlier time – a time in the 1950’s and 60’s when anything but a strictly bipolar male/female physicality, gender or partnering was considered disordered – a time when even homosexuality was considered a mental pathology.

The Rise of ISNA:

In 1993, intersex activist Cheryl Chase founded the “Intersex Society of North America” (ISNA), and began lobbying the surgical and pediatric communities to bring a halt to the practice of “normalizing” genital surgeries on intersex infants, which, of the many concerns we intersex people have, was Chase’s preeminent concern.

http://www.isna.org

Over time Chase’s personal crusade to stop such surgeries, of which she herself had been a victim, gained the attention of large numbers of people in medicine, psychiatry, and psychology. She also proved to be a skilled fund-raiser and ISNA gained substantial support from major donors and philanthropic organizations.

By 2003, Chase’s impassioned writings, lectures and advocacy efforts had helped her build deep ties all across the medical community.

Instead of functioning as a grass-roots intersex community organization and mostly interacting with intersex people, Chase instead sought attention, respect and recognition by the medical community – in order to most effectively lobby for a cessation of infant genital surgeries. A recent story in the New York Times confirms the extent of Chase’s connections in the medical community, as follows:

The Reification of DSD:

Chase’s medical connections included ties to a nascent coalition of university-based genetics and sexology researchers called "The Network on Psychosexual Differentiation" – a network of people interested in studying “sexual disorders”. Helping make those connections was Alice Dreger, a member of the ISNA Board who had connections in that research clique, especially at Northwestern University and at Penn State University.

The “Network on Psychosexual Differentiation” was supported by the NICHD to develop a research program all across the field of “sexual disorders”, which NIH could then use as a roadmap for making later larger research grants to the various Network members.

In a meeting in October, 2003, the “Network” adopted the old medical terminology of “disorders of sexual differentiation” as a key descriptor in their “mission statement”. That terminology then became deeply embedded in all their proposals, program descriptions and published papers:

http://nichdnet.psych.psu.edu/

http://nichdnet.psych.psu.edu/aims.html

http://www.intersexualite.org/English_OII/IAIA/IAIA_index.html

In parallel with the Network’s activities, Dreger and Chase at ISNA began work on a set of handbooks regarding the care and treatment of young intersex people – and at some point formed the “DSD Consortium” to promote these handbooks and to promote the DSD research. In doing so, they made a coordinated adoption of the DSD terminology in parallel with the NICHD Network’s adopting that same terminology.

http://www.dsdguidelines.org/about/cons

http://www.dsdguidelines.org/htdocs/clinical/index.html

http://www.dsdguidelines.org/htdocs/parents/index.html

Dreger then became the principal author (with Chase as a co-author) of a journal article that began the Consortium’s process of popularizing the DSD terminology as a replacement for intersex, both within and outside the medical community:

“Changing the Nomenclature/Taxonomy for Intersex: A Scientific and Clinical Rationale”, Alice Dreger et al, Journal of Pediatric Endocrinology & Metabolism, 18. (729-733 (2005).

http://www.medhelp.org/ais/PDFs/Dreger-Nomenclature-2005.pdf

Dreger’s disorders paper promoted the use of the old-time phrase “disorders of sexual differentiation" (later changed to “development”) – by using the straw man of “hermaphroditism” as if it were the word being replaced (instead of intersex being the word they wanted to replace):

A Backlash begins:

The publication of that paper by Dreger and the use of “DSD” by the DSD Consortium and the NICHD Network, led to the beginnings of a backlash in the intersex community against the adoption of such retrograde, old-time terminology.

As lead author of the disorders paper, Dreger reacted by going on the defensive, to prop up the terminology, in a March 2006 ISNA blog entry:

The Staging of a “Consensus Conference”:

Around the same time frame as publication of Dreger’s DSD paper, a “consensus conference” was staged in Chicago (in October 2005) by selected members of the medical community - to officially determine a new term for intersex people.

The resulting “consensus statement” involved the participation of many supporters of DSD terminology, for by now ISNA and the NICHD Network and the DSD Consortium had promoted that terminology very successfully in medical circles.

There was no grass-roots representation of the intersex community at the “consensus” conference, and our community was clueless that this was even going on back then. However, the word sure got out in May 2006, when the “consensus statement” was openly published:

“Consensus statement on management of intersex disorders”, by I A Hughes, et al; Archives of Disease in Childhood ac98319 Module 2, May 4, 2006:

http://www.medhelp.org/ais/PDFs/Chicago-Consensus-Statement-06.pdf

Alarm Bells Ring:

Alarm bells began to ring as word of this so-called “consensus” spread through the intersex community. Intersex people around the world alerted allies in the research community to ask “How could this have happened – especially without widespread intersex participation?"

Rapidly growing concerns among allies in the research community then led prominent researchers such as Prof. Milton Diamond to make eloquent pleas for the use of less pathologizing language:

“Variations of Sex Development Instead of Disorders of Sex Development”,

Milton Diamond, ADC-Online, 27 July 2006.

http://adc.bmjjournals.com/cgi/eletters/91/7/554#2460

Further escalation of the backlash might have been avoided, if discussions had been opened at this point, between the DSD Consortium and the many intersex advocacy organizations, about Prof. Diamond’s key idea: Why not simply replace “disorders” with “variations”?

Chase Goes on the Defensive:

However, by now it was too late. DSD was too widely embedded in the ISNA publications and DSD Consortium and NICHD Network research programs, proposals and publications – and in planned public events and media articles that were by now on their way.

By now Chase was also taking the pushback quite personally and becoming angry about the actions of the “intersex activists”, as Dreger called anyone who disagreed with the use of DSD.

Chase began defending DSD even more aggressively – including appearing at the AISSG-USA Annual Meeting, August 4-6, 2006, and handing out a brochure explaining her reasons for supporting the terminology. In the process, Chase revealed some very dark things about ISNA ideology – things our community has long been aware of, but that now need to be looked at more closely.

As documented in her brochure, the bottom line of Chase’s defense of the old-time DSD terminology is that:

Here Chase makes an appeal to return to the old-time, pathologizing medical terminology – saying that the newer term “intersex” might be confused with agendas of “radical social change”, such the normalization of homosexuality and the normalization of transsexualism.

Does this sound like homophobia and transphobia to you? It sure does to us.

A Fait Accompli?

But Chase did not stop there: The consensus statement was given more publicity in the pediatric medical community in August 2006 – in a publication which further gave the impression that this was an “intersex consensus”, as if it HAD involved widespread participation by the intersex community:

“Summary of Consensus Statement on Intersex Disorders and Their Management”, Christopher P. Houk, et al; PEDIATRICS Vol. 118 No. 2 August 2006, pp. 753-757

http://pediatrics.aappublications.org/cgi/content/extract/118/2/753

“DSDs and the Chicago Consensus Meeting/Statement”, AISSG-UK

http://www.medhelp.org/ais/15_ANNOUNCE.HTM#16%20Aug%202006

The terminology was also given national media exposure in a glowing article about Cheryl Chase in the New York Times on September 24, 2006 – and article that made extensive use of “DSD”:

"What if It’s (Sort of) a Boy and (Sort of) a Girl?"

Those publications gave the appearance of a “fait accompli” in terminology, and the intersex community now seemed powerless to stop it. However, the staging of DSD promotion events wasn’t over; there was even more to come.

The Staging of the DSD Symposium at the GLMA Conference:

Without intersex community knowledge or involvement, Chase had also arranged for an entire “DSD Symposium” to be staged as part of the Gay and Lesbian Medical Association (GLMA) Conference, on October 14, 2006.

The intersex community only heard about this Symposium “about us” when one of us noticed the GLMA conference schedule (showing how out of contact ISNA has become with our community – and in this case perhaps intentionally so):

http://www.glma.org/index.cfm?fuseaction=Page.viewPage&pageID=559

http://www.glma.org/index.cfm?fuseaction=Page.viewPage&pageID=560

http://www.isna.org/node/1089

http://www.isna.org/dsdsymposium2006/program

When many of us asked GLMA if they were aware of the controversy surrounding the DSD terminology, and of how pathologizing it was towards intersex people – the folks at GLMA appeared dumfounded, and said “we’ll look into it”.

Thus we discovered that well-intentioned but clueless gay and lesbian organizers of the GLMA Conference have given center-stage at the conference to the medical pathologizers of intersex people – where they can make pronouncements about how to “manage disorders of sex development” – i.e., how to “manage” the lives of intersex people.

Follow up:

GLMA made room for intersex activists to present a different view from ISNA and its DSD activists. They did this at the last minute and did show inclusion of dissenting views.

The fundamental error of conflating intersex with birth defects

by Curtis E. Hinkle

In order to make a very strict separation between intersex and transgender issues, the North American intersex movement has made a fundamental error and that error is conflating intersex with birth defects, an error they have committed so as to differentiate transgender issues which are viewed as gender issues and intersex issues which are viewed as purely a body issue. In this essay we will see that it is not that simple and that this political tactic has limited the action and growth of the intersex movement and objectified those who are intersexed.

The fundamental problem with viewing intersex as a medical condition only is that unlike other congenital conditions which affect the body, sex is recorded on birth certificates. Intersex can often pose serious challenges in deciding which of the two official sexes to put on the birth certificate which then affects the whole life of the individual who has been placed in one of the two categories, often resulting in treatments deemed necessary to normalize their bodies so they fit the stereotypes of that sex and furthermore can result in assigning a sex which is totally alien to the person in the body which has been normalized. This can cause very serious trauma which affects many intersexed individuals and the underlying justification for these "medical" treatments is the legal need to impose one of only two sex categories on all individuals born. This legal requirement to sex all bodies as male or female is the one, basic justification that the medical community has for mutilating intersex bodies, putting the child in boxes which may be totally unacceptable to them and coming up with a very rich set of pathological terms and labels to pathologize any deviation from standard male or female.

I like the analysis that Judith Butler has made about gender as performative. Many people have misunderstood her terminology and thought that the term performative was equivalent to “performace”. She did later incorporate that idea. However, the original use of this term which comes from the field of linguistics is the more fundamental meaning she gives to the idea of gender as performative. In linguistics, the use of the word "performative" refers to statements which cannot be categorized as true or false but which “perform” the action they state. For example: “I promise.” “I swear.” “I pronounce you man and wife.” By saying these sentences, you have performed the act stated.

As opposed to people with other congenital conditions, those who are intersexed face a series of performative discourses which affect identity issues, not just their bodies. First, the statement, “It’s a girl”. The newborn in question is a girl because the person who writes this on the birth certificate has so stated. In other words the person’s discursive power and authority over the infant has placed her in the category simply by stating it and then recording it. This is all about the use of language to make something so, whether it is or not in reality true or false. Such legal discourse is purely performative because by saying it one makes it so and the individual is categorized without consent and for what purpose?

Then the child is given a name on the birth certificate, another performative use of language and these names are often “sexed”. Then the intersexed person might decide they wish to get married and once again they are faced with the use of performative language which often will not “pronounce them as man and wife” with the partner of their choice.

Medical, legal and religious discourse controls our lives in ways that other people with bodies that do not meet norms do not face and this is the serious problem with conflating intersex with just a body issue.

A person who is born without an arm is not faced with legal, medical and religious discourse which separates all people into one-armed and two-armed people and then sets very rigid norms which all the people of each category must adhere to. This is not recorded on the birth certificate. It does not require sorting through different lists of names, one for one-armed people and the other for those that are two-armed and it does not prevent a one-armed person from getting an artificial limb by making them agree to psychological treatments and being categorized as mentally ill for wanting to change their status from one-armed to two-armed people. Furthermore, it does not prevent a two-armed person from marrying another two-armed person.

Conflating intersex with body issues merely objectifies the intersexed and overlooks the complexity of issues and the trauma that many face trying to live in a world that has no place for them.

Our society has norms and these norms are not natural. They only appear to be natural because we have often unconsciously internalized them to such a degree that they seem not only “normal” but natural. Sex, gender and orientation are all part of the same basic problem which results from sexing bodies into just two categories. Some of us are granted the privilege of normalcy, while others are not and it all is based on our bodies and who owns those bodies – the state or the individual.

Intersex is one of the most challenging threats to this arbitrary division of people into just two categories because intersex is based on what is supposedly the very criteria for placing us in the categories male or female to begin with, the body. In this respect, intersex is a body issue and very few people would challenge that and to understand the topic, one has to deal with the body and how many bodies do not fit the norms imposed legally, not naturally, which are then medicalized into conformity.

However, this need to normalize bodies and to categorize people into just two categories also involves gender norms and sexual orientation norms which affect the intersexed to a much higher degree we have found out than the population in general. To minimize the issues of gender norms and sexual orientation norms which are all based on the body we have been “normalized” into, or legally defined by, is a very serious disregard for the intersexed person who has been placed in a legal category and normalized without their consent.

Until sex is no longer a legal category imposed on people, it is a very serious mistake to view intersex as just a body issue. Intersex is about forced normalization, about people assigned genders they do not agree with. It is about people who love others that society sees as the inappropriate sex. It is about all of this. About mutilated bodies, mutilated genders and identities and often being deprived of legally marrying the partner of one's choice.

Disordering the lives of children

By Curtis E. Hinkle

We are no longer hermaphrodites. We are no longer intersexed. We are all men and women with disorders of sex development according to many of the medical experts who have managed our lives over the past decades. We now have a new Consortium for the Management of Disorders of Sex Development and they are proposing to manage the lives of future children born with this disorder. What are the risks involved with this change in terminology? I think there are many.

Is intersexuality normal? No. However, it is totally natural and not life threatening in most cases. There are so many different phenomena in our natural world that are not normal. Our world is filled with people who are not normal in one way or another. However, what criteria do we use to judge whether these natural phenomena are disorders or not? What criteria do we use to determine if a natural variation in the human population is good, bad or neutral? I don’t have the answer to these questions because there seems to be no precise answer. It varies with the person making the judgments. I feel that there are two main questions to ask before judging behaviors, variations and other phenomena in the natural world. Are they harmful to society and if so why? Do they pose a serious risk to the individual and if so why? If the reason for the risk to the individual is simply society’s reaction to the issue and not any real threat to that society, then is it the individual who should be deemed disordered or the reactions of those judging the individual? I think that it would be most likely that the problem is within the one judging the individual, not the individual being judged.

Now that the managers of disorders are ready to start treating children with these disorders of sex development, I have a few questions about how this pejorative terminology will actually be explained to the child and the consequences of such pathological views that will be used to explain not only the physical sex of the child but the implications this will have on all aspects of the child’s life associated with sex, those being their gender identity, gender role, sexual orientation and actual health needs.

Once a parent is told that their child has a disorder, they most likely will assume there must be some treatment to either cure or manage this disorder. The consortium is not holding out a cure because this is not something that can be cured or needs to be cured in my opinion. However, they will become managers along with the parents. Are they becoming managers just of the child’s body which is the initial reason for the diagnosis? No, they are becoming managers of all aspects related to sex in the child’s life, their gender and their orientation. What starts out as a physical disorder to be managed is now viewed as a possible psychological problem with other disorders that could become evident if the child does not comply with the gender imposed and also we have the undercurrent of homophobia. Some of these managers may inform the parent that their child is more likely to be homosexual as a result of the disorder which could make a lot of parents think that the homosexuality is also a disorder, part of the original diagnosis when told their child has a disorder of sex development.

There are many people who do believe that homosexuality is a disorder and they are involved in research to prove it. They may not use the word “disorder” at this time but when links are made with intersexed children, it would be much easier to introduce this concept of homosexuality being a disorder also. Once you decide that certain variations of sex development are disorders, then most behaviors closely connected with that group could be viewed as part of that disorder.

When would a manager of the child’s disorder reveal to the patient that they had a disorder of sex development? How could this be done in such a way that the child does not feel that puberty, identity and other essential aspects of their lives would not be disordered also? I don’t think there is. The very term “disorder” implies that compliance with the protocols will be essential not to be disordered, not to have a disorderly life and that the managers are the only ones who have the solution. But they are not living in the body of the child. They are not living in the mind and heart of the child. Children do not have the words or the experience to understand sex, gender and orientation.

When speaking with children, one needs to keep it simple. This is why I like Dr. Hazel Beh’s and Dr. Milton Diamond’s suggestion that we use the term variation. It is easy for a child to grasp that boys and girls come in all varieties. They can look around them and see that there are all kinds of boys and girls but that each kind or variety is not necessarily a bad thing or a good thing. We are just all different. What is damaging to a child is to feel that they are not just a different kind of boy or girl but that they are a disordered or defective boy or girl. This has very serious implications for the child and could make their future development even more stigmatic and traumatizing while interacting with those in control of their bodies.

Every feeling the child has could be internalized as part of the disorder and something else that needs management and which is shameful. Not feeling like other boys or girls, not looking like other boys or girls and not having a sexual orientation that is like most other boys or girls could be and most likely will be interpreted by the child as part of their original diagnosis, part of their disorder of sex development.

Welcoming children into our lives is a wonderful gift for many of us. Watching them grow and holding out a helping hand not only enriches our lives but builds character and strong bonds which overall helps society as a whole. Let’s give intersexed children the assistance they need to live in a world that does not understand them and make sure we do not simply manage them and further damage them with pathological, pejorative terms which make them not only feel different but defective and defective in one of the most essential parts of what our society has deemed all people must be to be fully human – their sex.

Pathological (hetero)sexism and the medicalisation of sex in children

Intersex – The sex that dare not speak its name

by Curtis E. Hinkle

It is hardly a newsflash that we live in a sexist society. However, just when we think we might be making progress in our struggle for equality and dignity, we are sometimes surprised at the backlash and the political power behind it. We have seen evidence of this powerful (hetero)sexist machinery in the United States just recently with the announcement by ISNA, the Intersex Society of North American, concerning its embrace of the term “disorder of sex development”. This term is supposedly better for children than the term “intersex”, according to this US group.

I read an article just the other day by Vincent Guillot, an intersex activist in Europe, entitled “C’est à nous de sortir du discours medical” (“It is up to us to distance ourselves from medical discourse”). I agree. It is also up to those of us who are intersex adults to speak out against pathological (hetero)sexism and its devastating effects on intersex children. We were once children. The doctors and experts who speak for us often do not have our best interest at heart. They are part of the sexist machinery which has so damaged many of us as children, who have not listened to us and who continue to control our lives.

The fact that many intersex adults may in fact feel that they suffer from a medical condition in no way should silence those of us who disagree with this view of our sex. The term intersex was quite capable of being used as both a medical term referring to a condition of atypical sex differentiation and those wishing medical help were able to get help with all the current pathological diagnoses which are associated with those of us who have bodies which are not standard male or female. No one was dictating to the intersex adults who viewed their bodies from a pathological perspective about how to seek help, nor was anyone saying they did not have a right to view their intersex condition as a pathology. The situation has changed drastically however with the term DSD or “disorder of sex development”. This disenfranchises a large segment of the intersex community because it is purely pathological, sexist and humiliating to many of us. We also have a right to protect children from such damaging, sexist, pathological politics which are entrenched in our medical, legal and social institutions.

Let’s look closely at this term. It may help us understand the mentality of those who would choose to use this in speaking about a defenceless child. First of all, they are saying the child is disordered. Merck is the publisher of one of the most popular medical reference books in the United States. This is the definition of “disorder” from their website: “a derangement or abnormality of function; a morbid physical or mental state.” (1) From the day of birth and often even before birth, the intersexed child is now going to be labelled as deranged or abnormal because there is a perceived malfunction or morbid physical state. This deranged or abnormal malfunction is based on centuries of defining people by sexual reporductive function. To define a child based on their future sexual and reproductive function is clearly sexist and something most children would not understand since most have no concept what it means to be sexually functioning adults. It sexualizes infants and sends the message that their real purpose in life is to have biological parts which would work heterosexually for reproductive purposes even if no treatment devised will probably permit many of them to reproduce. The proposed treatments often simply allow the intersexed infant to simulate heterosexual activity later in life, something the child may have no interest in as they mature and come to terms with their sexuality or lack of sexual interest. It is incorrect to assume that all children will want to simulate heterosexual copulation as adults. This often makes them even more ashamed because they are being treated for a deranged state (that of not being born with what is deemed proper for future reproductive, and therefore heterosexual, functioning). Their body becomes a destabilizing element to such sexist, political institutions and the young child is propelled into an array of sexist discourse about who they are and what their body should look like in order to have any hope of fitting into the system. But what I would like to ask is this: Is this really helping the child? Is the child really deranged or abnormal? Does this really require medical intervention? What is really sick about the body of the intersexed child? Why does the child need to be ordered? I think that the answer to everyone of these questions is based on profoundly sexist and heterosexist political discourse which controls our societies and has little to do with the interest of the child. It is all about the health of the heterosexist political institutions in our societies. The disorder or derangement is not in the body of the child in my opinion; it is in the society which the child is going to have to live in which is going to use a whole panoply of biomedical technology to enforce an unnatural order which has been accepted as self-evident and therefore requiring all possible measures to impose this unnatural order on all bodies which do not conform to the sexist division of all people into female and male. To blur the arbitrary division between these two categories of people is threatening to (hetero)sexist dictatorships which thrive on male/female dichotomies and the resulting power they receive within the system. The inequality of power among members within this system is not viewed as the real threat. No, it is the body of a defenceless child which is the battleground and s/he will pay a big price for having a body which questions the arbitrary, sexist categories required to make the heterosexist system work.

Sex is the next word in the new term “DSD” used to replace intersex, the sex that dare not speak its name. The following is a rather good definition of what most people are talking about when they use this word:

We see the inherent heterosexism in this definition. From a biological perspective, sex in humans is basically dimorphic. But even from a biological perspective, sex cannot be defined as dimorphic. However, biology is just one area of science dealing with the human body and sex. From a genetic perspective, sex in humans becomes much more complex and less dimorphic. Genetic variations within individuals which would make them not standard male or female are numerous, with very few people being totally male or totally female. Even using the terms “male” and “female” when referring to genetic markers poses serious problems because what one is calling a “male” marker does not inevitably lead to “maleness”, etc. The sexism of the arbitrary, binary construct becomes even more obvious when trying to talk about genetic components of sex.

The message that many intersexed children will hear is that their sex itself is a disorder, a disability and a deranged physical state. This does nothing to relieve the shame and stigma associated with being intersex. I feel it only increases the shame and stigma because we are once again making intersex the sex that dare not speak its name. Just as being a hermaphrodite was so humiliating, the more accurate term “intersex” now is deemed too “political” to use when speaking about an infant. (See article by ISNA about why they feel intersex is too political.) (2) What is really wrong with not being clearly male or female? Can we not love a child that does not meet these unnatural norms? Red hair is not typical but it is natural for infants to be born with red hair and it is just as natural for children to be born intersex and it usually requires no more medical treatment than being born with red hair. Both children, the one with red hair and the intersexed child need love and acceptance from parents. Denying who you are and pretending you are not intersexed is not a loving, nurturing act in my opinion. It further damages the child.

We have two officially legal sexes. This legal system is necessary for a heterosexist patriarchy. However, it is not natural. It is politically and socially imposed and the intersexed child risks paying an extremely high price for revealing the obvious – there are not just two sexes. The child was unfortunate enough to be born of a sex that dare not speak its name – intersex.

Next, we have the word “development” as part of the new medical diagnosis for the young child. I have personally felt that the word "differentiation" is more accurate because what the medical experts are viewing as disordered is that the foetus did not differentiate “properly” into a male or a female. The word “differentiate” seems more accurate because we are actually talking about maintaining strict “differences” between male and female. Choosing the word “development” appears obfuscating to me – as if the DSD activists are trying to say that the problem is just that certain reproductive parts did not develop properly when the problem really is that the child is defying the strict and very arbitrary divisions between what we classify as male or female. This is clear if we were to consider how a child born with a big penis is treated. Most likely the child would not be viewed as having a disorder of sex development, even though the genitalia would be “overdeveloped” in relation to most other infants born. No, having a big penis would not blur the sexist legal categories of male and female. There would be no treatments for this child most likely. The problem is not clearly being differentiated as male or female and has nothing to do with development, underdevelopment or overdevelopment.

I read an interesting commentary by a very articulate intersex activist who mentioned the connotations of the word “development” and his reasoning made a lot of sense to me. By using this term, the child is being told they might be undeveloped. This is certainly not a very enabling way of talking about children.

What it seems to boil down to in my opinion is that those of us who did not develop into the full malehood are now simply underdeveloped people and children. This keeps the category “male” even safer and harder to attain, even though many of us identify as male or live as male.

I think that those of us in the intersex community who disagree with this sexist politicization of intersex infants and their bodies have a right to speak out. Others have the right to speak for children also, not just a select few.

In my opinion, being deranged, deformed, of the wrong sex, and undeveloped does not help infants and children. Dare to speak up for them. Dare to speak the sex that dare not speak its name – INTERSEX.

Footnotes:

(1) Mercks definition of disorder is found at

http://tinyurl.com/7flku

(2) "Parents and doctors are not going to want to give a child a label with a politicized meaning." From ISNA's article on why they are using the term DSD (Disorder of Sex Developtment) found at

http://www.isna.org/node/1066