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Re: Re: Consensus statement on management of intersex disorders

Dear Editor,

We found Hughes et al’s [1} consensus statement on the management of Intersex Disorders fascinating as it builds on an earlier article published by Ogilvy-Stuart and Brain in the ACD [2]. However both papers brought to mind a case described by the late-renaissance surgeon Ambrose Paré (1510-1590) which has continued to perplex us. The case is of a girl who suddenly became a man at fifteen years of age. We are uncertain as as to in which category the case should be placed within the proposed revised nomenclature.

“In the suite of the King, at Vitry-le-François in Champagne, I saw a certain person named Germain Garnier. Others called him Germain Marie because when a girl he was called Marie. He was a young man of medium height, well proportioned, wearing a thick red beard. Until fifteen years old, he had been considered a girl, since he showed no signs of virility, associated with girls and wore their clothes.As he was in the fields vigorously chasing some pigs going into the grain, he found a ditch before him. He jumped and instantly developed the genitals and a virile penis, having broken some ligaments that had apparently kept them enclosed and hidden (this caused him no pain) He returned crying to his mother’s house, saying his entrails were coming out of his belly: she was greatly astonished at the spectacle. Having assembled Physicians and Surgeons to advise her, they found she was a man and not a girl. They reported it to the Bishop, who was the late Cardinal de Lenoncourt. By his authority at an assembly of the people, he was certified a man and instead of Marie, he was called Germain. He took the dress of a man and I believe that he and his mother are still living (in 1579)” [3]

It is indeed a fascinating case history and we would value the authors’ thoughts on this matter.

A.N. Williams, C. Moudiotis

Northampton General Hospital

References:

1] Hughes I A, Houk C, Ahmed SF, Lee PA, Consensus statement on management of intersex disorders Arch Dis Child 91:7:554-563

2] Ogilvy-Stuart and Brain Early assessment of ambiguous genitalia Arch. Dis. Child..2004; 89: 401-407.

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Re: Ambiguous terms still persist in the Consensus

Dear Editor,

In the last 30 years, our Group has followed-up more than 400 patients with disorders of sex development (intersex) and we have witnessed the difficulties for the patient and for the family in supporting the many hardships imposed by the diagnostic work-up and the choice of sex of rearing. Every professional who deals with this kind of patients must be aware that the terminology employed with the family and with the patients must be carfully chosen not to give a connotation of the sex of rearing, different from the sex of rearing chosen for that particular patient. I am glad to see the proposal of a new nomenclature on disorders of sex development (DSD), since terms such as Intersex, Pseudohermaphroditism (male or female) and Hermaphroditism may give a confuse connotation to the patient. I praise the authors for the wonderful job done but I would like to disagree with certain options such as “Ovotesticular DSD” for True Hermaphroditism and “46,XX testicular DSD”for XX male. We all know that many patients with true hermaphroditism are reared as females and it is weird to see a girl with a condition called “Ovotesticular DSD” . It is similar to the situation of “feminizing testes”, used before it was known that this syndrome resulted from androgen receptor resistance. As the majority of XX males go into male sex of rearing, “46,XX testicular DSD” would not be so complicated. But, if we remember that 20% of these patients have ambiguour genitalia and some may be reared as females, again the name of the disease becomes inadequate for the social reality of the patient. Maybe “46,XX reversal DSD” would be a better option. On the other hand, the karyotype as part of the name of the diagnosis may be confusing to the patient. Today, every patient is aware of the significance of 46,XX or 46,XY and, again, the name of the condition may not be adequate to the sex of rearing of a specific patient. I would appretiate that the Group took into consideration these observations about terminology, which was the main motivation for a new nomenclature of the disorders of sex development.

Durval Damiani, M.D., PhD
Head of the Pediatric Endocrinology Unit
São Paulo University Medical School
Brazil.

Reference:

Send letter to journal:
Re: Variations of Sex Development Instead of Disorders of Sex Development

Dear Editor,

The late John Money, writing about intersexuality, appropriately said, "Words can wound. Medicine can be very cruel in diagnostic terms." He commented, "hermaphroditism or intersex are too stigmatizing for people born with a syndrome that affects the sex organs." Money therefore labeled sex development variations as "sex errors of the body" in his texts for parents and clinicians. He viewed the term "error" as less stigmatizing, because he thought it focused on characteristics of the anatomy rather than of the person. Modern medicine continues to view a range of variations in sex development as biological errors and this perception has been used to both justify and require medical intervention.

Recently, a Consensus Statement on Management of Intersex Disorders was published in the Archives of Diseases of Childhood. Perhaps with the same good intentions as John Money, one of the recommendations of the Consensus Group called for a change in nomenclature, this time renaming such variations in human sex development to “Disorders of Sex Development” or DSD. Laudably, the Consensus Group rightly recognized that the terminology medicine employs sends important signals to parents, caregivers, and patients. Notably, with the advantage of some hindsight, the consensus statement is sagely more conservative and cautious in recommending surgical interventions, particularly for infants and young children, than standard care has been in recent decades. Nevertheless, the consensus statement remains wedded to the notion that variations in sex development constitute “disorders” or "something wrong" that should be medically or surgically managed. We hold that such is a decision only the effected person can decide.

Medicine is certainly not static. One need only recall the battle over and ultimate removal of homosexuality from the DSM to appreciate that concepts of disease and disorder are influenced by social construction and politics as well as informed by science and that social constructions, politics and science do not stand still. And so it is appropriate to reconsider what labels are assigned to conditions of the human body from time to time.

It is undeniable that medical labels have a power that transcends medical treatment. Those who influence how medicine classifies individuals must be sensitive to the potential transformative power of the labels they assign. Medical labeling affects social and legal order. But most importantly, labeling affects individuals. While medicine from time to time may reconsider terminology, the labels assigned to persons born today with sexual characteristics outside statistical norms can become static symbols of their inferiority that they might shoulder for a lifetime.

Variations of sex development inextricably involve sexual and gender identity, sexuality, and one's innate sense of self. Thus, the term disorder is far too narrow and too pathological to be accurate. We oppose its adoption in this instance. We suggest that the institution of medicine take a more humble and compassionate approach, recognizing that the institution of medicine does not act from a sphere of perfect knowledge nor hold a monopoly on classifying individuals. What medicine observes are variations in human sex development, it does not know the biological purpose of such variations, and there remains great controversy about how, whether or when to intervene. Terms such as error or disorders reveal an unwelcome arrogance in light of medicine's limited vantage. Medicine can do better. One way is to, instead, use the term Variation in Sex Development (VSD), a term that is without judgment and neither prohibits or ordains medical intervention.

Hazel Glenn Beh, Ph.D., J.D., William S. Richardson
School of Law
University of Hawaii

& Milton Diamond, Ph.D.
John A. Burns School of Medicine
University of Hawaii

References:

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Re: Re: Variations of Sex Development Instead of Disorders of Sex Development

Dear Editor,

I would like to thank Dr. Diamond for suggesting the use of VSD over DSD, as I don't like negative medical terms defining me. I'd rather be seen in a positive way with humanistic attributes.

I’m frustrated living in our stereotypical 2-sex /2-gender medical and social system that permeates, controls, and dominates the world…since I’m living as a “variation” in my sex and my gender. When I was in my 20’s, doctors told me that I had 47-XXY sex chromosomes, no sperm and 10% of what was considered normal testosterone production in my undescended gonads. I was referred to as an endocrine disorder that needed to be fixed; a mutation, and a eunuch. My gender identity was never discussed and was put on massive doses of testosterone without being told what would happen. My only complaint was a low sex drive. I was not offered counseling nor emotional support and was told I’d have to take testosterone injections for the rest of my life. Doctors offered me breast reduction surgery and testicular implants, but I declined! I went through an unanticipated puberty in my 30’s, and dealt with my emerging body changes alone.

I didn’t know I was intersex until discovering the Intersex Society of North America (ISNA) in 1995. I’m an intergendered, intersex individual and don’t recommend sex-related medical interventions on anyone without their “informed” consent. I’m a person with an anatomical variation not a disorder.

For me, my sex chromosome variation affects my sense of gender. Being manipulated into taking testosterone has violated my bodily integrity. I think it ironic that, transsexual people have to pay for their own “medically necessary” interventions; while medical insurance pays the costs of “medically unnecessary” surgery (and hormonal interventions) on those who are too young to give legal consent.

While ISNA’s advocacy for children’s rights is admirable, if we survive long enough through our physical and emotional traumas to become intersex adults, shame and secrecy are still the name of the game. Binary sex terms continue to reinforce the idea that there are only 2 sexes. With intersex what does “same or opposite sex mean?” My male partner and I appear to be the same sex and gender, but that’s an assumption. What defines us as male, female, women or men? Intersex persons are discriminated against because there is no legal "sex" classification for us. Legally speaking, intersex people don't exist and it seems to me the medical community would like to keep it that way.

Send letter to journal:
Re: Thank you very much Dr. Diamond

I wish to thank you both for your very well-written response which emphasizes the need for respecting the human dignity of the individuals who are going to be "managed" by the experts who follow these guidelines.

Your willingness to treat us who are intersexed with respect has touched the hearts of many of us, including me. I agree with you wholeheartedly in your suggestion that "variation" is a much better term than "disorder". Being labeled disordered dehumanizes us and reinforces the stigma and shame many of us have felt throughout our lives.

The term variation is as you pointed out not judgmental and it opens the door to more management by the individual intersexed person who may or may not wish to have treatments to alter their body. It is also a concern to many of us that these guidelines seem more about managing gender, not real health issues that intersexed people face.

When will we be able to manage our own lives, our own bodies and reclaim the right to identify ourselves?

Send letter to journal:
Re: Was Variations of Reproductive Development considered?

Dear Editor,

The new intersex terminology scheme, based on Disorders of Sex Development (DSD) and discussed in the consensus statement by Hughes et al [1], seems to offer the following benefits:

a) it covers a wide range of intersex conditions without using the archaic and stigmatising hermaphrodite and male/female pseudo- hermaphrodite terms, b) it should end the problem of the term intersex being used by some clinicians to mean ambiguous genitalia (and being extrapolated by the media to mean gender identity problems in all cases) when it in fact includes conditions like Complete Androgen Insensitivity Syndrome (CAIS) and Swyer syndrome with a totally female phenotype, c) it should abolish the assumption, on the part of the uninformed, that all affected people are "between the two sexes", d) it should reduce the problem of people using nouns to label patients ("She's a male pseudo- hermaphrodite" or "She's a genetic male", as if her whole being/identity is governed by this), e) it allows inclusion of non-intersex XX-female conditions like Mayer Rokitansky Kuster Hauser syndrome (MRKH) which share some common features (such as absence of uterus/vagina) with XY-female intersex conditions, f) it provides a terminology with which clinicians and funding bodies will feel comfortable and which has fewer political/activism associations in the eyes of parents, and g) it possibly differentiates intersex from transsexuality more clearly (but no doubt the trans community will try to annexe the DSD term).

The downside could be:

a) the choice of the term disorder is bad news. One might say, in its defence, that DSD is merely an umbrella term, and that the name of an individual diagnosis would be used wherever possible, but DSD's position at the top of the naming hierarchy makes it hard to ignore, b) some adults have come to like the more socio-political, whole-person terms and may ask why those who have been advocating a non-medicalising "proud to be intersex" philosophy over the last 10-15 years now seem to be advocating terms based on pathology, c) its reduction to a 3-letter acronym is possibly unfortunate as it allows use of DSD as a cover-up term (to avoid having to say the word 'disorder'? or 'sex'?) and d) there was lack of wide consultation on the new scheme amongst international peer support groups.

On 8 August 2006 one of our UK members had her story published in the Independent newspaper, an account in which she uses the term intersex. When asked if she knew that the term was likely to change to DSD (in clinical circles at least), she replied, "Disorders of... is horrible. Just adds to the sense that we are wrong. I like intersex."

So the overall structure of the scheme seems a significant advance on what has hitherto been available, although certain terms used within it seem retrograde in nature. Like Milton Diamond and Hazel Beh [2], my first reaction was why not use Variations of Sex Development, but I then learnt that VSD is already in use for Ventriculo-Septal Defect. Was Variations of Reproductive Development (VRD) considered, especially since many people might take issue with the notion that their sex is disordered, whereas they might accept that they have a variation in some aspect/s of their reproductive tract?

Another important issue discussed in Chicago is improved patient care. We have worked since the mid-1990s with selected UK clinicians to promote a patient-centred, multi-disciplinary approach to intersex patient care of the sort recommended in the Consensus statement. The first meeting to which we were invited, to discuss this with clinicians within the University College London Hospital NHS Trust, was on 6 Aug 1997; and the multi-disciplinary clinic there has been successfully running for a number of years now, with a high proportion of our members attending. So the recommended paradigm is already up and running in the UK.

Margaret Simmonds

Androgen Insensitivity Syndrome Support Group (AISSG) UK
www.medhelp.org/www/ais

References:

1] I A Hughes, C Houk, S F Ahmed, P A Lee LWPES/ESPE Consensus Group Consensus statement on management of intersex disorders Arch Dis Child 2006; 91: 554-563

Send letter to journal:
Re: The terms need to evolve

Dear Editor,

I believe it is fair to say that using terms like "sex" and "disorder" in medical nomenclature can be regarded confusing, as well as stigmatizing. It would be confusing because if a parent with a child seeking information typed "DSD" into a search engine on the internet (As people in this day and age do), there would be many things returned that would be irrelevant. If they typed "Disorders of Sexual Development", I suspect the results would not be suitable.

I would agree with the advocates of "DSD" terminology that there needs to be a clear set of medical terms. I am just not sure "DSD" would be ideal. However having myself spoken to one prominent advocate of this nomenclature, I am led to understand that formulating this terminology is an ongoing process. I sense that there does need to be a practical understanding of how this terminology would work in the real world. The example of someone seeking information on the internet is a case in point.

There seems to be a number of possibilities that could work better. "VSD" (As proposed by Professor Milton Diamond [1]) does seem more practical to people seeking information for example. I imagine it would be a helpful exercise to look at any revisions of the terminology with that in mind.

Another aspect of the debate would be that as an understanding of these conditions becomes clearer, this does leave the possibility that this terminology could be subject to revision. I recentley read an interesting abstract by Professor Eric Vilain [2] that implies a fluidity of the terminology is perhaps inevitable, the basic assertion being that current nomenclature in terms of genetics can be misleading and distressing. An example of the pitfalls of current terminology would be the misleading idea that a woman with Androgen Insensitivity Syndrome is somehow "Genetically Male". The DSD consensus moves toward clarity by saying "46 XY female". But this does not truly address the ingrained (In my opinion false) belief that "46 XY automatically equals male". My understanding is that Eric Vilain's work will address this and clarify that chromsomes do not determine sex, rather genes and many other factors do. The hope being, that the complexities would be better understood and then better conveyed, thus clarifying that 46 XY does not automatically mean some sort of "Male" status, (as in the given example).

So it would appear to me that the current model of "DSD" is going to need evolve as time passes. Both from the perspective of people seeking information and from the perspective of the medical professional seeking a meaning behind the terms that are both more accurate and less stigmatizing.

As the "DSD" Model currently stands, I feel that it not the ideal, but I rather get the impression that there is room for revision of this nomenclature as understanding progresses.

Sophia Siedlberg

References:

1: Milton Diamond, Hazel G. Beh Variations of Sex Development Instead of Disorders of Sex Development Arch Dis Child 2006, Electronic Letter, 27 July 2006

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Re: The DSD

Dear Editor,

My name is Ghada and I was born with 5 alpha RD. AT the age of 11 I have passed surgery, A reduction of my clitoris and a gonadectomy. After the surgery I continued to live my life and I was never told the truth about my body. I always felt different, but I could never really have a name of what I had. At the age of 27 and for the first time in my life I found online the fact that there are support groups and I joined one of them. In the websites I found for the first time a name that can embrace who I am. A term that relates not only to my physical differences, but also to the Gender differences I felt and practiced. This was the term "Intersex". As a person who tries to live my life with my eyes open and my heart open to variations and differences in all fields of life. I embraced the term Intersex, it is a narrow term and I would be happy maybe to call it, Multi -sex, since I don't like the way this world is stuck between two Sex and two Genders. I do agree that we have to work very closely together, Support Groups and the Medical staffs and find better ways to make us intersex people Visible. Any terminology that tries to adjust us between the two existing and known Sex or Genders is leaving who we are as intersex in the outside. Especially those who wish like me to keep the two Gender roles that I feel. We created the Order and we sat the rules for the Disorders of this Order "The Errors as some like to call them". I am not an Error or Disorder. I am another face in the Order and that doesn't make me less fitting. I am willing to work hand in hand with the medical staffs in order to help and try to provide the answers for the intersex Individuals, giving " ANSWERS no ACTIONS" , And let the intersexed people ask for the actions after being fully informed.

Send letter to journal:
Re: DSD and Identity

Dear Editor,

The Consortium on Disorders of Sex Development (“DSD Consortium”) has recommended that in venues where the medical care of infants is considered, the term "Disorders of Sex Development" and the initialism “DSD” be used in favor of the term “intersex.” While both “DSD” and “intersex” are “umbrella” terms (meaning that they encompass people born with a variety of discrete conditions but having important features in common), the former has recently been adopted to aid in classifying conditions involving sex development. Prior to the adoption of “DSD” as the preferred term, there was apparently some confusion about whether certain medical conditions properly fell under the heading of “intersex.” The Consortium's avowed aim in preferring “DSD” is to support improved medical care for children born with such conditions. To that end it has produced two publications entitled Clinical Guidelines For The Management of Disorders of Sex Development In Childhood and Handbook for Parents, both of which employ “DSD” nomenclature almost exclusively.

A large and diverse number of adults treated for these same conditions have spearheaded this movement for improved care. They are committed to an open, honest and productive dialog between the medical community on the one hand, and patients and their families on the other. Many if not most of these adults have adopted, and prefer to continue to identify with, the term “intersex” as a way of classifying their conditions and to speak about their bodies and their experiences. They find the word “intersex” empowering because it provides a sense of community and allows people with many different conditions to band together to work toward better medical care and social justice.

There is a splendid and powerful array of narrative and poetry, prose and biography, and websites and scholarly publications which reflect the many facets of what it is like for individuals to be born and raised, and now living, as intersex individuals. Many of these works have been incorporated into compelling anthologies which have resulted in a long overdue voice for the silenced, a point of entry into the experience for the non-intersex world, and a shift in the medical care of children born with such conditions. Some of these writings may seem frank, raw and perhaps even bitter, no doubt in part because in the past there was less appreciation by the medical community of the psychological needs of intersex patients. These works remain relevant for the current generation of children and their parents who are confronting the challenging issues described in the Parents Handbook.

It would be a mistake to to advocate that “intersex” be replaced with “DSD” within such community, in the same way that people with a variety of different conditions identify themselves using terms which may vary from the terms employed by their health care providers. For example, instead of using a diagnosis such as “achondroplasia,” many individuals with such conditions have banded together using the term “Little People” because it reflects their history, culture, and real-life experience.

It would also be regrettable if the term "Disorder of Sex Development" were to be adopted even in a clinical setting for other than an interim period until a more appropriate term is adopted. DSD embraces the notion that morphology trumps identity, and that intersex is a pathology. It is not mere political correctness which compels a change from "Disorder" to "Variation" as proposed by Dr. Diamond and Professor Beh. Instead, such change is a beginning point in having medicine reorient its thinking about the validity and acceptability of intersex bodies in their natural state.

It is equally important that as we look forward, intersex support and advocacy groups don’t abandon the term “intersex” even as they may work in tandem with the medical community to adopt a new nomenclature. "Intersex" is a term which gives meaning and purpose to, and reflects the courage and determination of, a community which has dedicated itself—often at considerable personal risk—to seeking improvements in care and widespread awareness and acceptance.

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Re: Disorders of sex development similar to more familiar disorders

Dear Editor,

As a member of the International Consensus Conference on Intersex, and an affected adult, I supported the new nomenclature, which replaces both "intersex" and "hermaphrodite" with "disorders of sex development" (DSDs). But it would be a mistake to consider "DSD" to be a synonym for either "intersex" or "hermaphrodite."

Medical management of intersex has been treated as if it were utterly different from other areas of medicine and, as a result, has lagged behind while other areas have benefited from advances in ethics and in the use of evidence. The Consensus Statement is a welcome first step in bringing the treatment of conditions affecting sex development into conformity with the rest of medical practice.

The older terms "intersex" and "hermaphrodite" clearly label the whole person, not a medical condition that the person has. Awkward constructions like "hermaphroditism" and "intersex conditions" are attempts to circumvent this problem Further, the older terms imply a gender identity, and often one that contradicts the patient's actual gender identity.

"Disorders of sex development" is not a synonym for the older terms: it refers to the underlying physiology that causes the atypical sex anatomy. With the new nomenclature, a patient with, for example, partial Androgen Insensitivity Syndrome will not be labeled *a* male pseudo-hermaphrodite, nor *an* intersexual. Rather, the patient *has* an endocrine disorder, one of the endocrine disorders that affects sex development. Some individuals with this genetic disorder have male gender identity, some female, and indeed some have a more complex and less common gender identity. Precisely because of the broad range of possible identities, and because people do not experience their gender identity as a disorder, it is imperative that the nomenclature for the underlying cause of the atypical sex anatomy *not* imply any gender identity.

"Disorder" is a word commonly used in medicine. The causes of atypical sex anatomy include genetic disorders and endocrine disorders. Use of the word "disorder" in the new nomenclature makes clear that DSDs are similar in many ways to other, more familiar disorders.

That is, the principles of medical ethics must apply. For example:

* Deceiving or misleading a patient about her condition is not acceptable;

* The importance of using evidence to determine interventions applies (e.g. the performance of surgery based on a "belief" is not acceptable);

* DSDs are conditions that the patient will live with during [throughout] their entire lives.

* Medicine can help, but no intervention (including appearance altering surgeries during infancy) will eliminate the condition.

Send letter to journal:
Re: DSD vs Intersex

Dear Editor,

With all the hoopla regarding using the term DSD as opposed to Intersex, I was hesitant to add my own two cents. However, after giving it a lot of thought I decided my opinion does matter. And what I have to say is as important as any other letter that is for or against the term DSD.

As an intersexed child at the University of Chicago Hospital, several diagnoses were attached to me, none of them adding any meaning to how I felt, which was confused and alone. After hearing Cheryl Chase on television talk about people like herself that are born neither male or female, I knew I had finally found someone I could relate to.

I loved the term Intersex then, and I still do today. I felt empowered for once in my life. I was Intersex, not someone with PAIS, Panhypopituitarism, Hypothyroidism and Hypogonadism. I found a term that not only defined me but also helped me to understand that I am not alone. I quickly embraced the term Intersex, and with the help of Cheryl Chase became an Intersex Activist and Educator.

When people asked me about my “condition” I told them I had no “condition”: I am Intersex. I wore Intersex like a badge of honor. Nothing the doctors did to me mattered because I was able to forgive them through educating others. I can never forget the years of hospitalizations and numerous tests. But being Intersex made me feel like none of it mattered anymore. I was born this way for a reason. I was, and am, proud to be Intersex.

Through the years I watched ISNA struggle to get the message out to the medical profession regarding the mistreatment of Intersex children and informing parents of the choices available to children born Intersex. Children born Intersex. This is why I became an Intersex Activist. I didn’t want what happened to me, the mistreatment I endured for almost two decades, to happen to another child. My focus, like ISNA’s, became the children that are born Intersex. I have spoken at numerous colleges, universities, private organizations, etc, on the importance of society being educated about Intersex. My motto was one person educates two people about Intersex, those two people educate two people about Intersex, and so on and so on. However just because my focus was on the kids doesn’t mean that I lost focus on the adults that are Intersex. Those that still lived in shame and secrecy. Those who are not as outspoken as I am, and have not found comfort in the term Intersex.

A lot of people confided in me that they did not embrace the term Intersex because they are not gay or lesbian, and they feared being stigmatized as such. I wanted to relate, really. But I didn’t see how someone that is Intersex would not embrace such a powerful term. An in your face, taking back my body, term that I love. But slowly I understood.

As more and more people began to use the term Intersex who weren't Intersex I grew angry. How dare someone that hadn’t endured what many Intersex people endure, someone who isn’t remotely Intersex, co-opt “my” term.

When I first heard the term DSD, Disorder of Sexual Development, I felt betrayed. But gradually I realized how using the term DSD could better help kids born Intersex. If we talk in terms doctors can understand, they seem to understand us better.

That doesn’t mean that I like the term DSD or will ever embrace it, I don’t and I won’t. DSD is a diagnosis, and I was given enough of those as a child. I love being the radical in-your-face Intersex Activist and Educator that I am. Intersex is fine!

But working in the medical field in the past, as an emergency medical technician now, and soon to be paramedic, I understand how doctors think. And I can understand how some parents agree with doctors that their child is NOT Intersex. We live in a world where language is everything. I don’t speak Spanish, so it would be virtually impossible for me to verbally communicate with someone that only speaks Spanish. When it comes to communicating with the medical profession we have to speak their language. Using the term DSD to me is speaking the language of the medical profession.

I don’t expect every Intersex Activist to embrace the term DSD. It does feel like a slap in the face. But it’s important that we remember why we -- why I -- became an Intersex Activist: FOR THE KIDS! And if meeting doctors at their own level by using simple medical terminology like DSD will help them to better understand how to do a better job for children born Intersex then I am all for it.

I will add DSD to my curriculum when I speak, but I will NEVER EVER forget that I am Intersex!

Send letter to journal:
Re: Respecting Self-Perception in a Patient Centered way

Dear Editor,

As Professor Milton Diamond wrote, words can wound. There are cases where they can even kill.

As a gender therapist, sexologist and psychotherapist, who has become acquainted with intersexed/intergender persons, I have always stressed that my professional interactions with them must be within an ethical framework based on their personal narratives and insights with special emphasis on their particular needs as they articulate them to me. I would hope that all gender therapists would have this same approach which can be summed up in one word, 'respect'.

Concerning the new Consortium for the Management of DSD's in children, I am of the opinion that any decision about intersex/intergender clients needs to be patient-centered, that is, based on the client's own self perception and identity.

Some do perceive their condition as a "disorder". Surely. However, a considerable number of intersexed adults do not perceive themselves as having any type of disorder and perceive this terminology as disrespectful and contrary to their own goals of living openly and proudly as who they are. So here is the issue which seems fundamental to me as a professional health care provider. Why should there be an authoritarian position taken by the medical community in defining all intersexed people in a category which obviously makes many of them feel disenfranchised and further marginalized? Although there will probably never be any medical term that would please all intersexed persons, the term "variation" does seem to be less offensive to more and more of them and it does have the added benefit of using non-judgmental language within the medical community which can also evolve and further learn from its experiences with the intersexed and eventually change the terminology all together into something such as "atypical" or "not so typical."

Personally, I feel that intersex is more a VSD, a variety of sex differentiation and not a DSD, a disorder of sex development. It is true that in some cases a VSD would be accompanied by a disorder, such as an endocrine disorder, but all those disorders are classified within current medical diagnostic categories and the appropriate treatment is already established for each disorder. To confuse the two does not add clarity. It only increases the confusion around the question of intersex as a health problem to be treated, with or without consent.

The whole picture is much bigger than the individual parts. I would like to suggest that Dr. Milton Diamond, David Cameron, Curtis Hinkle, Sherri G. Morris, Sophie Siedlberg, and many others have proposed possible solutions which could work as an interim term as we move towards a less pathological view of intersex, which indeed would help remove the trauma, stigma and shame that many intersexed people are subjected to throughout their lives.

Let us not mistake the parts for the whole picture. That could be the root of a new form of stigmatization.

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Re: Disorder a no no!

Dear Editor,

My first inclination that something was different was when a doctor doing a company insurance physical listed on the medical form that I was "exempt" from certain coverage because of a pre-existing medical condition as a result of hermaphroditic indicators. I ran out of that facility in shame. Later found that the scar on my groin was not the "cyst" I had been told was removed as an infant but a probable 'defective' ovary. Always sterile and later told I never had a prostate.

I really don't care what all this means and refused suggestions for genetic testing since I had accepted I was a transsexual and did have surgery to correct what I knew to be a birth mistake many years ago. Now in later years doctors are telling me more and of course I appreciate their honesty. No more lies and half truths to contend with. Now I am simply a woman. Never will I allow myself to be treated as if I was or am suffering from a 'disorder' or allow others to define me in their image.

I am not yet comfortable with being 'different'. I am just used to it. But never in my life did I ever think I had a disorder or a condition that needed to be treated as if like a disease and that to me is what disorder just might mean to some.

Variation surely means just that to me. My God have I gone through the variations of life and understanding of so many levels of it. I might even suggest perhaps 'Variation of Sex Syndrome', 'Sex Variation Syndrome', etc. but not disorder for that linked with sex would make me wonder how many chat rooms and porno sites would jump on that?

I am very uncomfortable with the condition of 'Intersex' being linked to sexual orientation as well. I find that to be a dangerous position to take for it creates fractions within the community and misunderstanding of what should be a common goal of acceptance and/or medical treatment.

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Re: Children are not disorders

Dear Editor,

As the professor Milton Diamond wrote it, words can wound, there are cases where they can even kill.

As a counsellor, my reference is always the experience of my clients and it is a personal, an ethical and a professional goal to understand them as they understand themselves.

The intersexed people I know are all telling me that they got deeply destructive messages during their childhood. Instad of being welcomed, respected and, if needed reassured, they got endless silence, lies and manipulation. This behavior gave them the message that they were dsysfunctional, inherently bogus and without value. This left deep wounds in them, and it takes them years, sometimes decades to recuperate.

Regardless of their gender identity and their sexual orientation, the ones who recover are deeply convinced of one thing: their body is not disordered and they are not disordered. It is in no way a mistake, a bad thing, or a disorder to be born intersexed.

We are currently seeing intersexed people recovering from the abuse they suffered, taking power over their lives, meeting each others and organizing themselves through various organisations, like the Organisation Intersex International. In other words, they are freeing themselves of the "disorder" model and they are freeing themselves of the people who want to normalize them.

And suddenly, appears a medical group with a new name for intersexed people. They are no more intersexed, now they are "disorders of sex developpment". Beyond the fact that I have serious questions about the real motivations of the people who created this new expression, I am deeply convinced that this term will strongly hurt a large number of children, who will receive a reinforced message according to which they are inherently dysfunctionnal and bogus. And once again, they will take years, sometimes decades to recover. I cannot consider this an improvement and I cannot consider this as a respectful way to treat human beings.

Marie-Noëlle Baechler

Belmont-Sur-Lausanne / Switzerland

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Re: Disorder vs Intersex

Dear Editor,

I am concerned about the promotion of terminology that reinforces a notion of disorder for people who are intersexed. I prefer a term such as variation or atypicality.

I am concerned that people who have not had access to proper diagnostic work-ups available now will be excluded from appropriate treatment: people such as myself who may have had experimental interventions many years ago, but became alienated through such interventions and subsequent examinations. The failure to treat people appropriately because they fall outside an arbitrary category can be as problematic as treating people inappropriately.

I floated a survey on the title of this letter on the internet recently (it is still ongoing), and out of over 60 respondents, less than 10% endorsed the use of this new terminology. This ratio of 1-9 was consistent for people who identified themselves as intersex and who had experienced medical intervention for such in childhood.

It would appear that this terminology is being adopted with minimal consultation in relation to those who will be affected by it who are in a position to speak now. Part of the thrust of some proponents appears to be precisely because it will exclude some people from treatment (as we have seen in one or two previous responses).

Cryptorchidism, hypospadias, growing up unaware of inherent infertility, the early-onset of undiagnosed osteoporosis along with other such problems are not trivial; some of the attempted treatments for some of these in the past has not been fun either. Finding out the consequences of having such problems later in life simply because of some other medical problem, when they could have been treated much earlier had there been proper disclosure is no joke. Having been told that such symptoms have nothing to do with intersex, have an unknown cause, or haven't existed because the medical notes were lost, etc., I am not encouraged that the adoption of new terminology will make this sort of situation any better for people in the future.

Whilst the tone and content of the guidance for DSD is laudable, how far this will have any authority to affect practice is unclear. If people are specifically excluded from coverage, it is hard to see how practice in those cases can be expected to be any different from what has gone on in the past. Many underdeveloped males will not have a 'disorder', they will still be males who need fixing in certain ways to ensure they become 'proper' men, and as far as I can see there will be no reason to consider their feelings on this.

I am concerned that this approach on adoption of this terminology in relation to a vulnerable patient-group appears to run contrary to current trends in medicine, where such views are usually taken into account. It is more reminiscent of a bygone era where patients had things done to them with only limited discussion, because the Doctor always knew best.

I am also concerned that by classifying something as disorder, not only will it serve to exclude some from appropriate treatment, it will help justify experimental treatments carried out on some retrospectively, and justify inappropriate experimental treatments on some in the future.

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Re: DSD support from a physician and mother

Dear Editor,

I am a physician and a mother. Sixteen years ago, when I learned that my daughter had complete androgen sensitivity syndrome (AIS), I reached for my textbooks with the confidence instilled by 10 years of medical training. Encountering the terms "intersex" and "pseudohermaphrodite," I was shocked and unnerved. Despite being a physician, it was not until 15 years after the AIS diagnosis that was I able to incorporate the complicated idea of intersex into my world view.

For the last seven years, I have participated in support groups for AIS women and parents. The parents have universally rejected the term "intersex." The myriad implications and nuances of the word "intersex" prevented parents from accepting it as medical terminology. The Chicago consensus paper provides a new paradigm of care for children with DSDs, and it replaces the old umbrella terms based on "hermaphrodite" with a new taxonomy based on "disorders of sex development" (DSDs). Adults who prefer "intersex" should simply continue to use that word.

One of the main goals of the AIS parent group is to obtain medical care from providers in multiple specialties in order to address the well- being of the whole child. I was able to assemble a group of physicians and therapists on my own, but there was no mechanism to coordinate care. When AIS parents heard of the DSD nomenclature and new paradigm of care, they were eager to learn more. A record number of parents attended the August annual meeting of the Androgen Insensitivity Support Group. Parents reacted to the material in the Chicago Consensus as sensible and long- overdue. They left the meeting with the DSD Consortium's Handbooks for Parents [1] and a determination to demand patient-centered care from their providers.

In my specialty, breast radiology, comprehensive care for breast cancer patients has been standard for many years. Current trends in medicine mandate quality initiatives to reduce medical errors. This is accomplished with evidence-based care that is designed to address the needs of the whole patient. All of medicine is moving inexorably toward a patient-centered care model. The Chicago Consensus details how various components of multidisciplinary care for DSD children will be coordinated. For too long physicians caring for children with DSDs have focused only on gender identity. The new nomenclature, by emphasizing the genetic and endocrine disorders underlying what used to be called "intersex," will help bring patient-centered care to families who need it, right now.

References:

1. Consortium on the Management of Disorders of Sex Differentiation (2006). Handbook for Parents . Rohnert Park, Intersex Society of North America. Available from http://www.dsdguidelines.org .

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Re: Not as it seems

Dear Editor,

I can’t make a blanket statement whether intersex conditions are disorders or not, but I do feel strongly that no one else has the right to decide that for me. As a contributor to both Intersex hand-books it is still unclear to me how this consensus on terminology developed and who makes up the consensus group- authors or contributors. I do know that I was never asked to be, nor did I consent to be part of the DSD Consortium. I have also seen great resistance to the term disorder in my work with MD’s, therapists, families, intersex activists and allies.

If the intersex movement has taught us anything it is how we suffer most when don’t have ownership over our experiences. Those who are promoting the term disorders of sex development as though it was unanimously accepted are erroneous enough to make me question so much more…

Certainly all the contributors are not in agreement on this terminology. I wanted disclaimer (that I do not support the term disorder http://www.dsdguidelines.org/htdocs/clinical/acknowledgements.html or http://www.dsdguidelines.org/htdocs/parents/acknowledgements.html ) added to the web site, and future editions because I felt words were being put in my mouth simply because I agreed to provide feedback on this material. I did voice objection to the terminology prior to publication. I refer to my intersex condition as a difference in development, not a disorder. As an intersex activist, educator and president of the MRKH Organization, I know many people who are deeply hurt and troubled by being told they have a disorder and they do not want to be part of a disorder movement.

Thank you for your time and attention.

Esther Morris Leidolf

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Re: Praise is due too, but.............!

Dear Editor,

I have read the comments on the Consensus Statement with great interest. On the whole, I felt the document recommendations were to be commended and provide us with an excellent guide for optimal care, in particular with regard to surgical and psychological advice and support. However, I admit to being very uneasy about the way nomenclature was included in this meeting. Various CAH support groups ( from the U.S.A , UK. New Zealand and Australia) wrote a joint letter, expressing our concern to the organisers prior to the event, that no representatives of CAH were consulted. Although we appreciate it was not a deliberate exclusion and received a thoughtful and reassuring response, I found it rather unsettling to discover that such a vital aspect was added at the last minute and was not included in the proposed agenda we received. Terminology is such an important issue and not one that should be regarded lightly and perhaps if it had been discussed beforehand, with more Worldwide interested parties invited/involved for views and input in the debate the current discontent could have been avoided?

The majority of the CAH community do not agree that the condition should be regarded as Intersexed and although I feel that Disorders of Sex Development will be a slightly more acceptable term (certainly to parents), I still feel it is not strictly applicable to CAH. Unlike the other conditions, we cannot deny that CAH is a disorder (of the adrenal gland) and have to admit to preferring this to the alternative; 'disease'! I have to agree though that 'disorder' is not an ideal term in the context of this new nomenclature and understand and agree with the discontent expressed by others. I conclude that finding a term that suits all the conditions currently under the Intersex/DSD umbrella was never going to be an easy task but I feel more thought, consideration and preparation into this aspect (which obviously went into the rest of the issues discussed) may have prevented such avid criticism and awarded the organisers/consensus group with the praise they undoubtedly deserve.

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Re: ...no need for further confusions!

Dear Editor,

It is interesting to read the comments, proposals, agreements and disagreements on terminology related to “developmental” variations, with “functional” disorders of sexual properties. In medical use, the term “disorder” is explained as “an abnormal physical or mental condition”, like the “refraction disorder” what I have since 7 years of age. If you look at the contents of “The Merck Manual of Diagnosis and Therapy” book, you will see the term “disorders” as section headings, like “allergic disorders”, “cardiovascular disorders”, “gastrointestinal disorders”, “ophthalmologic disorders” and etc. Hence, I believe that, this term is not a stigmatising one. However, the term “variation”, is already discriminating with its explanation:“divergence in one or more characteristics of an organism or biotype from those typical of or usual for its group”(Merriam Webster Medical Dictionary). Additionally, I find the term “intersex” mild and lovely, since it does not specify a certain “disease” or a “syndrome”. I use both the terms “intersex” and “Disorders of Sex Development: DSD” on my website (www.intersex-tr.org), and I personally believe that there is no need for further confusions with medical and/or descriptive terms.

Kind regards,

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Re: Variation vs. Disorder, Development vs. Differentiation

Dear Editor,

There is no doubt that language is contextual. Disorder as a term, while innocuously descriptive to one, may hold a negative connotation for another, especially those afflicted with whatever said disorder.

Regarding brain sex, I agree with the Consensus Statement on Management of Intersex Disorders (CoSMID) that “Structure of the brain is not currently useful for gender assignment.” Quantification and identification of brain sex haven't been at all forthcoming and fruitful on humans. A prodigious amount of neurons and synaptic connections that have to differentiate and develop would appear to, according to my statistical conjecture, render brain sex and other brain attributes variable (and study incredibly difficult) due to the immense complexity of the process. Gender that, then, combines brain sex and social and environmental factors would also at least, in line with brain sex that influences it, be variable. Sex, if one limits it to the genitalia and perhaps secondary sex characteristics, is dimorphic, as most persons get one of two possibilities when differentiation is complete - that is, if one ignores considerations of size and appearance, which some don't, but I do because functionality, to me, is paramount.

The authors of CoSMID appear to be focused on sex. Brain sex has already been ruled out by their statement on brain structure (see previous quote). Gender, in turn, is too variable to be predictable, and if one reads CoSMID, it is obvious it is not their focus. Most of their focus is at the level of the genitalia. As such, I believe sex was the main consideration for the designation "Disorders of Sexual Development" (DSD).

I take issue with the use of "development." I think it should be "differentiation" - that is, Disorders of Sexual Differentiation - as most DSD problems originate at that level. Development would be from puberty onwards. "Sexual development," in this case, may imply brain development because differentiation and development for the brain can be used interchangeably, but, again, I believe the focus was on sex.

I can only imagine, perhaps not even that, how it must feel to have a condition and it be labeled a "disorder." In a medical setting, however, "disorder" need not be stigmatizing or expedite surgical intervention or hormone replacement. I understand that medical professionals have set the stage with past controversial interventions that will cause them to be viewed with suspicion, but on the other hand we must call a spade a spade. From what is understood about sexual differentiation (and development), DSD cannot be anything other than what the term claims - disorders. Substituting "variation" for "disorder" colloquially is of no consequence, besides the assuagement of the afflicted, which admittedly is important, but scientifically, one would have to wonder about adaptation. If the focus were brain sex or gender, this might be an interesting academic and protracted discussion, but since it is sex (for reasons stated earlier), there are really only one of two possibilities, as most other possibilities tend to be dysfunctional or nonfunctional, leading to infertility. An adaptive benefit, even neutrality, seems doubtful. None of these considerations, however, must necessarily lead to medical intervention or management.

Again, I realize the need to be sensitive to the perceptions of the afflicted ("afflicted" probably will also be seen as a wrong choice of word), but I hope with this to somewhat lessen the supposed stigma "disorder" bears.

Sincerely,