Monday, August 18, 2008

Ambiguous Medicine and Sexist Genetics

Ambiguous Medicine and Sexist Genetics: A Critique of the DSD Nomenclature
By M. Italiano, M.B.B.S. (A.M.) and Curtis E. Hinkle
© Aug. 8, 2008

Many intersex persons around the world and their allies are concerned about the new nomenclature, DSD or “Disorders of Sex Development”, which has been endorsed by the Chicago Consensus (1) to replace the term “intersex”. We believe that the categories proposed are not only demeaning, but also scientifically flawed.

The age of chromosomes

The DSD nomenclature uses chromosomes, instead of gonads, as the most important classifier of an individual's sex, such as “46,XY DSD” and “46,XX DSD”. This is no more helpful than using male pseudohermaphroditism or female pseudohermaphroditism which was based on gonads. (2) Instead of male pseudohermaphroditism and female pseudohermaphroditism, the new DSD nomenclature proposes “46, XY DSD” and “46, XX DSD” as replacements for the former taxonomy.

Furthermore, what was called true hermaphroditism is now dichotomized to fit more neatly within the binary. True hermaphroditism used to be called “true” because it meant that an individual had both ovarian and testicular tissue and gonads (ovaries and testicles) were considered to be the “true” determiner of one’s sex. Of course the word "true" was problematic because it suggested that all other forms of “hermaphroditism" were not legitimate, only “pseudo conditions”. Also, using the term “hermaphrodite” as a word to describe a person with an intersex variation has often been criticized as insulting and inaccurate. However, by replacing true hermaphroditism with "ovotesticular DSD", we still have another problem. The DSD nomenclature now wishes to divide "ovotesticular DSD" (formerly true hermaphroditism) into “46, XY ovotesticular DSD”, “46, XX ovotesticular DSD”, or “chromosomal DSD” (of “46,XX/46,XY” chimerism or “45, X/46,XY” mosaic types). In effect, it gives an individual in the latter case two types of DSD, an “ovotesticular DSD”, and a “chromosomal DSD”. Also, we see the division based on chromosomes, which again exposes the preeminence of chromosomes as the “true” markers of an individual’s sex. Further, by combining “ovostesticular DSD” with a chimeric or mosaic karyotype, as it does, it also fails to provide a clear classification of so-called “ovotesticular DSD” which has 3 or more cell line types, isochromosomes, inversions, or ring chromosomes in the karyotype.

For individuals who have both 46,XX in some cells and 46,XY in other cells, and who are referred to as having a "chromosomal DSD" of "46,XX/46,XY(chimerism)" type, it is not uncommon for them to have male anatomy only (3) or female anatomy only (4) and they may also be fertile. In this new nomenclature they would be “diagnosed” as having a "chromosomal DSD" despite any practical relevance for them. Furthermore, although the DSD nomenclature is intended to be representative of congenital conditions, there are individuals who have become 46,XX/46,XY because their twin’s cells make up part of their own karyotype (5), or because an individual who is 46,XX received a bone marrow donation from someone who is 46,XY, as well as by many other means (6). In fact, a pregnancy may also lead to "false positives" for a DSD since fetal cells end up in a woman’s bloodstream. (5)

Likewise, individuals with a 45,X/46,XY karyotype are listed as having a “chromosomal DSD”, but with a parenthetical “mixed gonadal dysgenesis” or “ovotesticular” DSD. This is also confusing since many 45,X/46,XY individuals do NOT have mixed gonadal dysgenesis or ovotesticular tissue. Again, some have only typical male or female anatomy (some being fertile as such), and the XO cells are known to disappear during various stages of development. (7) Thus, predicting this type of “chromosomal DSD” in prenatal screening has been demonstrated to be hampered by a high rate of erroneous results, has provided unnecessary cause for alarm (by projecting birth defects which do not exist), has led to unwanted elective abortion, and is considered a serious problem in clinical genetics. (8)

Another problem is that the DSD proponents have misunderstood basic genetics (or intentionally distorted the information) and have assumed that XY chromosomes indicate that testicular tissue is expected. This assumption leads to another error in the new taxonomy because when gonadal dysgenesis is classified as a “46,XY DSD”, (see Table 2 in reference 1) DSD proponents refer to it (parenthetically) as "testicular dysgenesis". This is misleading and ambiguous because many individuals with 46,XY gonadal dysgenesis actually have OVARIAN dysgenesis. (9) It has been known for over 30 years now that in the presence of an unaltered Y chromosome, but in the absence of substances which would cause testicular differentiation and development, that ovaries start to form, not testicles. (reviewed in ref. 9). It is therefore deceptive to classify 46,XY gonadal dysgenesis as 46,XY testicular dysgenesis because testicular dysgenesis is the result on some occasions but at other times the result is ovarian dysgenesis. The type of treatment indications for dysgenetic testicular tissue may differ from that of dysgenetic ovarian tissue, and thus may unnecessarily confuse clinicians. Furthermore, the preeminence of chromosomes in this taxonomy is apparent and the idea that XY chromosomes somehow are the real “male” sex marker is the result of sexist genetics which produces more ambiguous medicine.

A basic problem with the DSD nomenclature is that it divides all the “disorders” into groups based on what are erroneously known as “sex chromosomes”. (10) This sexist interpretation of genetics, typical throughout this new nomenclature, leads to ambiguous medicine because there are individuals who have male anatomy only but have what appears to be XX chromosomes and are diagnosed as having a "46,XX DSD". Likewise, there are individuals who have female anatomy with what appears to be XY chromosomes and are diagnosed as having a "46,XY DSD". If these apparent XY individuals have a piece of the Y chromosome missing, (such as would include the SRY testis determining gene) they are still referred to as having a “46,XY DSD”, which is factually impossible since they are not XY, but X plus only part of the Y. Likewise, someone who is called XY (but in reality has an extra copy of an X chromosomal gene called DAX1) is also put in the category of having a "46,XY DSD", even though this is impossible, since they are not XY, but are instead X (PLUS another piece of an X)+Y. Likewise, individuals who appear to be XX, but are actually XX (PLUS the Y chromosome-specific SRY gene) are listed as having a "46,XX DSD" and a disorder of gonadal (ovarian) development, both of which are technically inaccurate. The fact that the DSD proponents (1) have put a note next to some conditions which indicates whether a deletion or addition of some X or Y chromosomal material exists, further demonstrates the inconsistency of their listing these conditions in the binary categories of “46,XY DSD” or “46, XX DSD” and not that of “chromosomal DSD.” In these regards, the DSD terminology is in violation of the principles and accepted diagnostic nomenclature used by clinical and molecular cytogeneticists. (11) Why didn't the DSD proponents put these in the "chromosomal DSD category"? One apparently needs an entire extra "sex chromosome" or to be lacking one, in order NOT to be put in the binary "EITHER XX or XY" category.

The DSD nomenclature is ambiguous and sexist in its understanding of genetics and it appears that this is necessary in order to preserve an "artificial binary". People who have portions of the X or Y chromosome missing or added are neither XX nor XY. The DSD system again here is flawed. Technically, CAIS individuals do not have a so-called "46,XY DSD" (even though the proponents state that they do) because the androgen receptor gene on the X chromosome is altered so that, in fact, they are only "X"Y. The androgen receptor is certainly involved in sex development. Thus if it is not there or is altered, it is ambiguous and misleading to call these individuals XY. It is equally ambiguous and misleading to call CAIS individuals “genetic males”. Yes, they have the SRY gene and a typical Y chromosome, but the X linked gene sequences for androgen "action" are not something that they "have". The same is true for an XY individual who has a female anatomy only, unaltered X and Y chromosomes, but an alteration on one of the many genes on one of the so-called "non sex chromosomes" (autosomes) which are certainly sex determining.

Sophia Siedlberg, Genetics Advisor to the Organisation Intersex International, came up with a polygenic model which explained the role of genes, not chromosomes, in sex determination. (12) This model has been misappropriated by others who don't know how to interpret it correctly. We can be quite sure, that barring an environmental cause (such as a teratogen), if we have an XY individual who does not appear to be a male, but instead appears female or intersex, that this person CANNOT be a “genetic male”, “chromosomally a male”, “genetically a male” and vice versa for individuals who have XX chromosomes. How do we know this? By the simple rule of basic genetics, that

GENES (+ environment) = PHENOTYPE (observable trait)

Thus, the DSD model based on "sex chromosomal" divisions has failed. By using the umbrella term “development”, it has also misapplied the knowledge base from the field of (sex) “differentiation” and conflated it with that of “development”. (13) It is ambiguous and sexist (in that it prescribes what sex one should be and not what sex one is and it perpetuates gender and sexist stereotypes based on chromosomes). It promotes confusion and oppression. It is NOT scientific. It simply uses scientific terminology in such a way that is confuses those who have little knowledge of genetics and biology. In so doing, it victimizes intersex people while offering “unlimited immunity" to medical and psychological professionals who continue FORCED sex assignments, FORCED sex reassignments, and FORCED gender expression expectations.

DSD makes the central health issue one’s sex

A second big problem with the DSD Consensus is that it largely ignores the health issues of intersexed individuals. With its emphasis on “sex” divisions based on chromosomes, they have persons with non-intersexed conditions like labial adhesions, cloacal exstrophy of the bladder and absent penis in an otherwise typical male, (or absence of a vagina in an otherwise typical female), mixed in with endocrine conditions, such as congenital adrenal hyperplasia, or mixed in with other organ system conditions, such as Smith-Lemli-Opitz Syndrome, and Turner's syndrome. These are then categorized as "sex development disorders", thus taking this "distant commonality" of one symptom, i.e., sex, and placing all of these disparate conditions as a disorder of one’s sex, while the predominant health issues become categorically "secondary" and likely to be ignored by clinicians.

DSD lacks clinical relevance

Even without considering the fact that the DSD Consensus largely ignores health issues, its taxonomy is in many cases irrelevant for the purposes of clinicians, especially those with subspecialties. An XX male with testes, a penis, and no female reproductive organs, who finds out at the age of 30 that his chromosomes are atypical after an infertility check, is in the same category as an otherwise typical female with ovaries and a uterus who has vaginal atresia. Both have a “46,XX DSD”. The same holds true for a male, typical in every way but with isolated hypospadias (classified as having a “46,XY DSD”), whose clinician finds that they have given their prior patient, an XY female with streak ovaries, uterus, and vagina who has given birth after embryo donation the same diagnostic classification of “46,XY DSD”. Again, ambiguous diagnoses lead to ambiguous treatment implications and vice versa. This is ambiguous medicine.

Gender conformity based on sexist genetics

With disorders of sex development, which sounds like “sexual development” (and can be confused with psychosexual development or psychosexual disorders), we now see a pathologizing of gender, gender identity, gender role, sexual orientation, and its ties to (re)assignment. People with a so-called DSD, especially in the binary XX or XY categories, are expected to conform in the above categories according to a binary gender expression, as indicated by the expectations of the DSD category, as well as the whim of the person who enforces the assignment or re-assignment. Those who reject such enforcement can be labeled mentally disordered, and treatment can be instituted or re-instituted at the whim of professionals, and this can be enforced legally.

DSD is about ambiguous medicine, sexist genetics, body control, and mind control. It certainly is not a client centered consensus statement. The fact that almost no intersex people had input into this consensus is glaringly evident.

In effect, we have moved from the “age of gonads” to the “age of chromosomes” even though it has been established that "sex chromosomes" as portrayed do not determine one’s sex. (10) This is based on prescriptive notions about genetics, not a descriptive understanding of the role of chromosomes in sex determination. Genes, not "sex chromosomes", determine sex, and most of the genes involved are not on the X and Y chromosomes. They are on the autosomes.

It appears to the authors of this article that the DSD nomenclature misinterprets genetics based on a sexist, binary male/female model and in so doing, it has erroneously pathologized and stigmatized intersex people in order to try to preserve the heterosexist male/female hierarchies that justify the oppression of many classes of people, not just those who are intersexed.


1) Hughes, I.A. et al. Consensus statement on management of intersex disorders. J. Ped. Urol., 2006, 3:148-162.

3) Gencik, A. et al. Chimerism 46,XX/46,XY in a phenotypic female. Hum. Genet., 1980, 55: 407-408.

4) Sudik, R. et al. Chimerism in a fertile woman with a 46,XY karyotype and female phenotype: Case Report. Hum. Rep., 2001, 16: 56-58.

5) Schoenle, E. et al. 46,XX/46,XY Chimerism in a Phenotypically Normal Man. Hum. Genet., 1983, 64: 86-89.

6) Ford, C.E. Mosaics and Chimaeras. British Med. Bull, 1969, 25:104-109.

7) Chang, H.J. et al. The phenotype of 45,X/46,XY mosaicism: an analysis of 92 prenatally diagnosed cases. Amer. J. Hum. Genet., 1990, 46: 156-167.

8) Robinson, A. et al. Prognosis of prenatally diagnosed children with sex chromosome aneuploidy. Am J. Med. Genet., 1992, 44: 365-368.

9) Wachtel S.S. & Simpson J.L. Sex Reversal in the Human. In Wachtel S.S. (Ed.) Molecular Genetics of Sex Determination., 1994, 287-309. Academic Press, Inc.

10) Italiano, M The Scientific Abuse of Genetics and Sex Classifications. Manuscript published July 17, 2008 © Organisation Intersex International.

11) Schaffer, L.G. & Tommerup, N. ISCN 2005: An International System for Human Cytogenetic Nomenclature (2005): Recommendations of the International Standing Committee on Human Cytogenetic Nomenclature., 2005. Karger, S.C. Publ.

12) Siedlberg, S. The Gender Genital Gene Genie. Manuscript published 2001.

13) Italiano, M. Some problems with the new terminology for intersex. Manuscript published July 13, 2008 © Organisation Intersex International.

Friday, April 18, 2008

Mutilations or non-consensual normalization treatments?

By Curtis E. Hinkle, Founder of OII
Available on OII's website: Click here

We have been asked why OII's Official Position on Health Care does not mention mutilations. There are many reasons for this. Most intersex activism has been focused on just denouncing surgery (basically feminizing surgery), while insisting on a gender assignment as soon as possible. However, this does not seem to have helped intersex infants and adults. As a matter of fact, we are now faced with a more pathological definition of intersex as a genetic defect (the real goal of the new DSD terminology is to classify all intersex variations by their genetic etiology) and non-consensual treatments are more justifiable now with the new terminology of “disorders of sex development” than when intersex activism began in the United States.

Instead of insisting on a gender identity assignment as quickly as possible, OII is convinced that it would be better to inform the parents of their child's physical difference in such a way that they will be able to make informed decisions about the real health needs of their child (and not all this focus on which gender identity is best for the child which is what we are doing now). Understanding the intersex variation and the anatomical, endocrinological and other physical differences are very important and this can be very difficult for parents who are usually not specialists in genetics or anatomy. They need help to manage the health care decisions concerning their child and understanding their child's body is what is important – not spending weeks deciding what gender identity is most appropriate. This wastes precious time and it makes the parents feel their child is so different that they can be overwhelmed, shocked and confused.

Once the parents are able to understand the intersexed body of their child and the particular intersex variation, that is the physical state of their child, it is important to stress to the parents that from a psychological and socio-cultural perspective, their child is like any other child. And this is why it is important that doctors be given the freedom to make TEMPORARY gender assignments because we do not understand the process of gender identity development and trans adults prove that we cannot predict a gender identity. The parents need support and help in understanding that a child that is classified as intersexed is not that different from other children – that intersexuality is a physical characteristic and that all children whether they are categorized as intersex or not face the same dilemma because the sex development process is so complex and there are so many factors involved that sex can never be understood clearly as a false dichotomy of just male or female. There are numerous ways that the sex of any individual could be different from just one of these categories and there will never be clear divisions between the two categories. Doctors would be more honest in stating that they are not assigning a SEX by explaining that what they are really doing is assigning a GENDER identity and the reason for this is to help the child integrate into the current socio-cultural system which is for the moment bi-gendered. This is why it is crucial that the child be allowed to be involved in the process because the point is to help the child best fit into the system and OII hopes that the system will eventually evolve to accept more gender variations and diversity.

At present, because of the way intersex children are treated, the parents are led to think that their children are very DIFFERENT from other children and that is not true. There is a physical difference and it is important to understand that in order to take care of the child's health, but taking care of the child's health should also include taking care of the child's emotional well-being and in order to do that the parents should understand that psychologically and socially their child is in the same situation as all other children and that is :

1) there are only two genders currently accepted
2) there is no way to predict the gender identity of any child, intersexed or not

If one starts constantly using the word “mutilation” in such a context, this could limit the choices of the child and the parents. There are many reasons OII prefers not to use that word in the official position while leaving it to individuals affected to use that term when it applies to their own experience. Instead, we prefer the term "non-consensual normalization treatments".

1) There are operations that are necessary for the health of the child, for example when there are serious urinary problems. There are other reasons also and the parents should not be concerned so much about mutilations as normalization treatments which are not necessary for the health of the child. At each step, the parent should be free to ask if the treatment is for normalization only or for real physical health concerns.
2) OII was contacted by a few people who were born with cloacal exstrophy and some had photos and they felt it was irresponsible to condemn surgeries in their case.
3) The problem is not always the surgery itself; it is the timing of the surgeries in many cases which makes them problematic. If you make generalizations and just denounce all surgery (and for the most part the US intersex movement has basically spent most of its time denouncing only feminizing surgeries which OII has found to be no more troubling than masculinizing surgeries), this can undermine a panoply of technologies that are already available which the child could eventually have access to in order to help them affirm their own identities. There is a place for normalization treatments if desired and those should be timed so that the child and parents can help make the decisions.
4) This is why psychological care can be important in helping the child express their “true face” to the world and in helping the parents deal with the unknown which can be a severely traumatic shock for them.
5) OII works with people on all continents and we have noticed that it is principally people who live in more affluent regions who denounce “mutilations” (principally feminization surgeries). Almost all intersexed people who contact OII from less affluent regions have contacted us because they do NOT have access to treatments, surgeries and counseling.

OII also prefers the term non-consensual normalization treatments because:

1) This term includes hormone therapy and if one listens closely to those who have been subjected to hormone therapy without informed consent, it is obvious that this is just as mutilating to many of them as surgeries are to some other people.
2) It is very difficult to get the general public to understand that virilizing surgeries can be even more mutilating because genital mutilation has become a term too closely associated with feminist discourse and the surgeries involved in virilizing an infant are often dismissed by such discourse because of the assumption that anyone would prefer to be a male and therefore this could never be a "mutilation". OII denounces that as sexist and very damaging to understanding the serious problem of infant virilization without consent.
3) OII respects our trans allies and to many of them these treatments are NOT mutilation (and they are also not perceived as mutilations by many intersex people either if they are given the right to an informed choice.)

If OII makes the same mistakes as those that have been made in the past and stresses our DIFFERENCES from others in an attempt to make clear boundaries among different identity categories (for example to find clear boundaries between trans and intersex, between homosexuality and intersex, etc), this will not bring progress. This reduces us to a rubbish heap of chromosomal, hormonal and genetic definitions (such as DSD or Disorders of Sex Development) which do not help us understand the “true face” of a child. On the contrary, such definitions give the impression that these markers define the child and determine their future and we know that they are not reliable predictors of the child's future.

OII is not in favor of an identity movement for people who are born with this physical difference that is another social construct called intersex. OII is an association that is in favor of human rights for those who are born with bodies that are not defined as standard for male or female and instead of emphasizing what we do not have in common with others, we wish to emphasize what we do share – our humanity and it is for this reason that we need as many allies as possible who are willing to think beyond identity politics.

OII is an organization which campaigns in favor of human rights for people born with intersex variations regardless of their identity or sexual orientation. We are not using the word “intersex” as an identity but merely as a descriptor for bodies which are not standard for male or female under current norms. The history of intersex has been one of assimilation and erasure. It is important that we speak clearly about intersex variations while taking into consideration as many different perspectives as possible from those actually affected in order to build bridges with humanity in general and avoid becoming one more invisible identity category within another minority identity movement.

People who are born with physical differences currently classified as having intersex variations are part of the WHOLE human family. OII does not wish to underline our differences from other groups, whether they be heterosexual, homosexual, trans or whatever identity because we belong to all these groups. What we wish is to build bridges between people and groups from all over the world in the hope of ending human rights violations against people with intersex variations and others who also suffer as a result of these sexist norms which affect humanity as a whole.

Wednesday, February 06, 2008

PRESS RELEASE: Congratulations to Christiane Völling

PRESS RELEASE - Feb. 6, 2008
Organisation Intersex International
Congratulations to Christiane Völling

The Organisation Intersex International congratulates Christiane Völling the German intersex woman who sued a surgeon for damages. Today the Cologne Regional Court ruled that her ovaries and uterus were removed over 30 years ago without her informed consent.

This verdict further justifies OII's position that present-day medical treatment of intersex infants and children needs to be reexamined and changes are needed so that not only the physical integrity of the child is not violated but also in such a manner as to respect the child's inalienable right to be accepted as the sex they feel most appropriate.

Current medical treatment recommends early surgical and hormonal intervention, which is often irreversible, in order to assign a sex without consultation with the individual concerned.

Society, the law and medicine need to respect the human rights of all intersex children and in order to do this changes must be made which reflect the biological facts that all people are not born male or female and that some people will not accept their early sex assignment and that others will not accept either a male or female assignment which they also feel is a violation of their human rights.

Christiane Völling's case did highlight a problem regarding legal sex definitions in which the judgment in her favor was based on her being defined as "essentially female" using genetic and anatomical markers. It appears that had she been treated the same way by the surgeon but had Swyers Syndrome for example (46 XY) and had her uterus been removed in the same manner then the Judge in the case may not have ruled in her favor. If the arbitrary use of biological markers remains, these medical violations of intersex people will sadly continue without challenge. It is our view that this should not be a debate about legal or medical markers of sex and fitting people into those categories, but about the integrity of the whole individual, and the rights of that individual to have their integrity both physically and mentally protected from societal, legal and medical violation.

We appreciate Christiane's courage and willingness to defend herself with such dignity and we wish her a long and happy life. We hope that this case will help heal the damage done to many intersex people worldwide and that society at large will make a place for us and treat us with the human dignity most other members of society enjoy.

Curtis E. Hinkle
Founder, Organisation Intersex International

For more information about Christiane Völling's lawsuit:

Sunday, January 28, 2007

New Website

Visit OII-USA's new website at:

OII – USA is the United States affiliate of the Organisation Intersex International, a non-profit organisation incorporated in the Province of Quebec, Canada. We have members throughout the United States. OII – USA resists all efforts to make intersex invisible, including genital mutilation, medicalization and normalization without consent and offers another face to intersex lives and experience by highlighting the richness and diversity of intersex identities and culture.

OII is the largest intersex organisation in the world with members representing almost all known intersex variations. It has members in North and South America, Europe, Asia and Australia.

For information on other intersex associations which are part of OII and intersex activists from around the world, visit our international site:

Friday, October 06, 2006

The DSD Chronicles

Visit OII's website which has pages devoted to the DSD controversy, Alice Dreger and J Michael Bailey

The intersex community has been severely DUPED and manipulated. The reason there was practically NO intersex participation in this DSD scandal that has been ongoing for quite a while now was because they most likely did not want any participation from people who might figure out what was going on and who was involved.

1) J Michael Bailey is a central figure in the Network on Psychosexual Differentiation at Penn State which resurrected the Disorder terminology in a psychosexual context. He spoke on different occasions at their meetings specifically on intersex and helped formulate their mission which includes the following:

“Develop or refine animal paradigms that model and help to explain the genetic, neuroendocrine, and social processes underlying both normal sex-typed behaviors and pathological behaviors observed in individuals with intersex conditions or gender-atypical behavior.”

2) Dreger and Chase then went about popularizing this terminology of disorders to the medical community outside the "psychology" and "psychiatric" community. We were told that medical doctors preferred the term "disorder". Well, they "prefer" it because that is what Dreger and Chase actually sold to them by publishing articles specifically on the reasons medical doctors should change to the term "disorder" as the preferred terminology long before most of us got wind of what they were doing.

3) Then Network members at Penn State and Northwestern "researchers" where Dreger and Bailey are located get all this funding that conflates the two issues - disorders of sex and disorders of psychosexual development.

4) Bailey is in BOTH groups and a CLOSE associate of Dreger and someone she has been defending.

DSD: The Scandal Exposed

1: The Consortium

DSD Consortium: Homophobia and transphobia exposed

2: Cheryl Chase and ISNA

Cheryl Chase and Disorders of Sex Development (DSD)

3: Alice Dreger

Alice Dreger: Disorders of Sex Development


Response from Michelle O'Brien to Dreger's e-mail sent to a few intersex activists

The Rhetorical castration of the Intersex community

4: Intersex activists start to revolt

IAIA’s home page

DSD - Is there really a consensus?

Three intersex activists defend children against pejorative terminology

5: About the Guidelines and the Handbook for Parents

Handbook for Parents is transphobic and homophobic

6: DSD: Commentary

Medical Fraud and Quckery

New Guidelines for Sex Development Disorders - Parody

7: DSD - Silencing Intersex Voices – International support letters:

Alice Dreger: DSD - Silencing intersex voices - United Kingdom

Alice Dreger: DSD - Silencing intersex voices - Canada

Alice Dreger: DSD - Silencing intersex voices - France/Belgium and Luxemburg

Alice Dreger: DSD - Silencing intersex voices - Switzerland

Resist – Refuse to be a victim

Despite the efforts of some who would wish to make us think we are powerless, it is important that we refuse these messages. We are not powerless. We have made it this far and there are no obstacles that can obstruct the truth.

We have the right to speak.

We have the right to claim our rightful place in society.

We have the right to be heard.

We have every right to stand proud. Ours is a noble cause.

We have proved that we can resist and reject society’s shameful and stigmatizing exclusion of us. We have proved the content of our character.

We are winners. That is the message that we in OII-USA would like to send to our allies and supporters from all over the world who are joining us in our struggle against those who would pathologize us and not listen to us.

We have received support from Canada, the United Kingdom, France, Belgium, Luxemburg, Switzerland, Israel, Argentina, Brazil, Spain, Sweden, India, the United States, Australia, New Zealand and from many different groups and organizations around the world. We wish to thank them from the depths of our heart and let them know that with their help:

We are winners and we will win.

Thursday, October 05, 2006

The Rhetorical castration of the Intersex community

An analysis of Alice Dreger’s Rhetoric of Power as applied to the DSD controversy

by Curtis E. Hinkle

First of all, it is very hurtful and in fact traumatizing to many of us in the intersex community to have an intersex activist who is not intersexed to tell us repeatedly that we are powerless. This is what Alice Dreger has now been telling us for several days. For many of us, this is part of the very damaging and stigmatizing messages we have received since early childhood. Our only hope for any sense of control over who we were and what was to be done with our bodies and our very sense of self was to retreat, to withdraw, hoping that by becoming invisible we could avoid further harm. Our families helped us in most cases by actually reinforcing the conspiracy of lies about who we were and only made the shame and powerlessness we felt as children seem justified. What we were was so shameful that we could not speak about it. We could not dare say what we were. We were just beginning to move beyond this paralyzing shame.

Once again, we are in a similar situation. We are being told that intersex is NOT something that any child should have as a label and those in power, those that Dreger convinced by her own articles and activism to stop calling us intersex, are going to deny us this one small crumb of human decency – a name that we were beginning to feel proud of as we slowly worked through our shame and trauma. And it has been very alarming and chilling to witness the open castration of the intersex community in Dreger’s rhetoric of power in which she reminds us of our proper place – powerless victims of those who know how to speak about us, who know how to manage us and who will once again “assist” us as we go back into our shells, brutally scarred once again from the current struggle to have some place in society and some voice, and hide, hoping we can heal from this last major attempt to castrate all remnants of intersex voices.

This is not acceptable. Alice Dreger’s rhetoric is NOT empowering. I suggest that it is meant to make us feel powerless, to convince us that we are. This is not acceptable. It is in fact cruel to treat a marginalized and very damaged group of people in this way when she knows we are bleeding from this last operation performed by her and ISNA that stabbed into the very heart of our slowly emerging identity and sense of being a small part of humanity. It is as if we have once again been excised from public view, that our very fragile sense of community was crushed into total submission – the eternal eunuchs.

Another technique used by Dreger is to repeat and define the categories of people who do have power in the debate and by doing so, we are excluded from the debate about OUR lives, our identites, our BODIES. We have been told over and over that those with real power are:


She has made it clear that she is a mother many times. She knows that many of us can never have children. We do not begrudge her the happiness that she has in being a parent but in addressing us and telling us that we need to speak to those in power which she defines as doctors and parents, it is very cruel to remind us that she is a mother, something that many of us would have so much wanted to be. It is a dual edged-sword this parental power rhetoric. It disempowers us by placing us in a category that most of us could never be in and then she reminds us that she is in that category.

Reminding us that doctors have power and most of us know that her husband is a doctor is also a two-edged sword. Equating power with doctors is something that is traumatically painful to many of us who remember the power they did exert over us and the very pain this abuse of power inflicted on our bodies and our souls.

We have been castrated publicly. This is cruel. We should reclaim our power and take the scalpels of privilege and stand proud and say NO.

We do have power and we will speak openly and proudly.

Quotes from recent messages from Alice Dreger to the Intersex Community:

"As a historian, I have to wonder whether a lot of the intense discussions among intersex adults is happening because it is something they can do. ... When you’re sitting on a closed-loop listserv, arguing with insiders who have not so much power, think about whether your time is better spent engaging those with power. Think about writing to doctors and telling them what happened to you and what you wish had happened to you. Think about providing positive, constructive support and education through the diagnosis-specific groups and through your community’s religious institutions, schools, and other non-profit organizations."

Talking about What Matters - Alice Dreger

"As I talked about in my recent blog on the terminology ..., I would really like to see people try to direct their writing, speaking, and thinking energies towards engagement with those with real power. That is not Curtis Hinkle, or for that matter most other intersex activists, including me. That is the doctors and the parents who need our help understanding how to make things better and better. That's why I spend the vast majority of my energy doing that kind of engagement and I encourage you to do the same, even as people whack at you (or your friends and allies) and try to distract you from your real work that I know you do so incredibly well--peer-support work, human rights work, educational work, medical reform work.:

E-mail sent to some intersex activists by Alice Dreger, October 1, 2006

Monday, October 02, 2006

Cheryl Chase and Disorders of Sex Development (DSD)

A report from OII - USA, Edited by Curtis E. Hinkle
October 2, 2006


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.

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:

“Chase has talked to thousands of doctors and others in the medical profession, making the case that being born intersex should not be treated as shameful and require early surgery.”

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:

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.

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).

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):

In conclusion, we suggest the language of ‘hermaphroditism’ and ‘pseudohermaphroditism’ be abandoned. One possible alternative . . . is to use instead . . . the umbrella term “disorders of sexual differentiation”. Such an approach would have the salutary effects of improving patient and physician understanding and reducing the biases that are inherent in the use of the current language of ‘hermaphroditism’. – Dreger et al.

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:

We realize, of course, that any terminology including the word “disorder” can be construed as pejorative. We’d also like to emphasize that we use the abbreviated form of DSD whenever possible. Explaining why this is important, Alice Dreger writes, “we find that, when accompanied by an explanation of what we mean, DSD isn’t terribly stigmatizing. And an important point: the acronym DSD is very useful—and thus, the acronym should be favored over the spelled-out term— because as an abbreviation we don’t focus on ‘disorder’.” We explain what we mean, and then use the term “DSDs.” Thus, we recognize that this is not a perfect term, but we hope ISNA’s supporters and allies will understand that it’s helping us enact real change in medical care. – ISNA Website

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:

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.

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:

“Intersex” has been embraced by groups with a variety of social agendas not focused on improving medical care. Whether or not you support these agendas, it’s confusing to label a patient’s medical condition with a label that implies an agenda of radical social change. Some of these include:

• people who want to prove that homosexuality is a normal variation

• people who want to prove that transsexuality is a normal variation

- From “Why change the medical nomenclature?” By Cheryl Chase

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

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

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):

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.

Things to Do:

We need to let GLMA know that we do not appreciate being blindsided this way, as if we didn’t even exist, and then left with no voice in these important discussions about our fates. You can direct your comments to:

Joel Ginsberg, JD, Executive Director

Gay and Lesbian Medical Association

459 Fulton Street, Suite 107

San Francisco, CA 94102

PS: You might also ask Mr. Ginsberg whether GLMA supports the ISNA pronouncement that “people who want to prove that homosexuality is a normal variation” are engaged in “an agenda of radical social change”. That sure sounds like homophobia to us. Maybe it will sound that way to GLMA too.

Links to Related Pages:

OII Articles on the DSD controversy:

Monday, October 2, 2006

Response from Michelle O'Brien to Dreger's e-mail sent to a few intersex activists

Saturday, August 26, 2006

Three intersex activists defend children against pejorative terminology

Monday, September 11, 2006

DSD - Is there really a consensus?

Thursday, September 21, 2006

Handbook for Parents is transphobic and homophobic

Friday, September 22, 2006

DSD Consortium: Homophobia and transphobia exposed

Tuesday, September 26, 2006

Alice Dreger: Disorders of Sex Development

Thursday, September 28, 2006


DSD - Silencing Intersex Voices – international support letters:

Alice Dreger: DSD - Silencing intersex voices - United Kingdom

Alice Dreger: DSD - Silencing intersex voices - Canada

Alice Dreger: DSD - Silencing intersex voices - France/Belgium and Luxemburg

Alice Dreger: DSD - Silencing intersex voices - Switzerland