Dear Editors,
As founder of the largest intersex organisation in the world, I would like to call your attention to the fact that we who are intersex have found almost no support for either the new terminology for intersex which we find stigmatising and offensive or the new protocols which are being developed based on this genetic redefinition of intersex as a birth defect.
You will find many articles on our website about this from the viewpoint of people actually affected, intersex people.
DSD - Is there really a consensus?
Disordering the Lives of Children
Kind regards,
Curtis E. Hinkle
Founder, Organisation Intersex International
Response from Sophie Siedlberg, OII-Spokeswoman from the United Kingdom
No Competing Interests? Not Good Enough!
By Sophia Siedlberg
Dr Katrina Karkazis recently submitted a small commentary about a 2007 case conference that was published in the October 2007 issue of the American Journal of Psychiatry, by J. Michael Bostwick, M.D., and Kari A. Martin, M.D. After raising a few minor questions Dr Karkazis concluded that "There were no competing interests".
Basically Dr Bostwick and Dr. Martin had given a description of a case where the patient did not feel "DSD" (Disorders of Sex Development) or other terminologies were helpful. And the two doctors seem to have been in agreement with this, stating that they will continue to use the term "intersex". Dr Karkazis decided to respond with a somewhat detailed response against this stating that the DSD guidelines were drawn up and compiled and ratified etc, in a clear and fully agreed fashion. I would argue that Dr. Karkazis is not being entirely truthful.
To begin with Dr Karkazis states:
"One recent development is the Consensus Statement on Management of Intersex Disorders (2). This document, which grew out of a conference of 50 international experts in diverse medical specialties, marked the first time researchers and clinicians thoroughly revisited the medical standard of care for diagnoses of intersex conditions since John Money and his associates first proposed treatment standards in the 1950s. Participants agreed to recommend several important changes to care that demonstrate a significant shift in thinking for the treatment of intersexuality."
The consensus statement was published in response to the treatment of a number of patients during the latter half of the 20th century by one Dr. John Money who had operated a blanket policy of surgically feminizing children born with ambiguous genitalia. While Dr. Money's policies were widely adopted in the US, they were not universally so. Also a number of people were surgically mascunlinized at this time. The general attitude at the conference was to deny the existence of these cases probably for fear of future litigation (which has since come to pass in the form of the Volling Case in Germany).
Dr Karkazis is correct in that the consensus statement was primarily written to address issues surrounding Dr. John Money and his treatment protocols; however, she fails to mention the wider issues of other treatment protocols which were as damaging as Money's, and that the consensus statement even advocates some of the equally damaging alternatives. Dr Karkazis continues:
"Owing to the recognition that patients and parents (and even clinicians) find the terminology and labels surrounding intersex conditions confusing and stigmatizing, participants adopted a new nomenclature in which intersex was replaced by the more general descriptor "disorders of sex development," which refers to congenital conditions in which chromosomal, gonadal, or anatomical sex development is atypical. Terms such as hermaphroditism and gender-based diagnostic labels are to be replaced with clinically descriptive terms (e.g., androgen insensitivity syndrome)."
In 1999 and later 2000, The Johns Hopkins (The main advocates of Money's work originally) used the term "Disorders of Sex Differentiation" as the title of the third chapter of their guidelines dealing with children with various endocrine conditions. The "DSD Consortium" which emerged from the Consensus statement first used "Disorders of Sex Differentiation" in fact older print copies of both the consensus statement and the consortium literature still carry this unmodified John's Hopkins terminology. Normally this would be considered incidental except for the fact that it is the John Hopkins who were at the center of the original debate and operated Money's policies. "Covering their backs" seems to be the relevant phrase. It does seem interesting that all this really started to happen at around the time Dr. John Money passed away.
I suspect the whole "DSD" consensus and consortium has been little more than a damage limitation exercise simply because they have taken little or no notice of those who raised concerns about other policies in the past that caused a lot of misery. Participants in the DSD consortium (I will refer to the whole as the DSD consortium from now on as the separation of the two has been a diversionary tactic in my opinion) included as small handful of intersex patients themselves, all made to tow the party line of the Intersex Society of North America (an America-centric organization). Some of these patients ended up disagreeing with this. And then a much larger number of parents and Clinicians. It was a somewhat biased "Consensus of opinion" in favor of parents and clinicians, which as many intersex activists have since pointed out, was the problem in the first place. "The Doctors say treat the parents, control the child". The emphasis placed by the DSD Consortium on the views of parents and doctors clearly illustrates that this point has not been revised at all.
Dr Karkazis continues:
"Acknowledging that there are minimal systematic outcome data pertaining to genital surgery, that orgasmic capability may be harmed by such surgery, and that there is little documentation to support the widely held belief that early surgery relieves parental distress about atypical genitals, the Consensus Statement on Management of Intersex Disorders states that surgery should only be considered for young girls with "severe" genital virilization."
In other words after a lot of "Discussion" and much "Debate", we have Dr John Money's "Phalo-meter" test still being applied, only in a more "Controlled manner". To Clarify Dr John Money would simply insist that the enlarged clitoris or small penis be measured and if it met the criteria for being of "Penile length" he would not remove it, if not then it would be refashioned into a normal looking "Clitoris". This is essentially the same thing, only instead of using a ruler we find a buccal smear test being employed, if it is "XX" then "Slice" if "XY" then "Slice differently".
Now it is at this point we find those "alternatives" appearing. With Money it was simple: "Too big, lob it off". With some other protocols we find that if the "offending tissue" passed the "Phalo-ometer" test, all manner of strange things could happen, from very messy phaloplasty to the removal of a uterus. Te DSD Consortium are proposing pretty much the same thing: Money's feminization on the one hand with as of yet un-mentioned masculinization on the other. And instead of a ruler being placed against the "offending tissue" a Karyotype test is undertaken.
Want Proof?
"Participants also noted that psychological care should be integral to medical care, that homosexuality should not be construed as an indication of incorrect gender assignment, and that the potential for fertility—originally emphasized for female gender assignment only—should be an important consideration for male gender assignment as well."
There was no emphasis of female fertility in Dr. John Money's protocols. It became a hot button topic a little later on. Dr John Money simply cut one way if the child's genitalia did not "measure up". Also I seem to remember in 1997 to 1999 the notion of "Preserving fertility above all else" was seen as some activists as reducing them to little more than breeding potential. It is fair to assume that "Homosexuality" really translates as "Objecting to this in later life" and that "Such objection should be ignored" and (This is the precious bit). "We will make this happen with those we assign male as well". Given the true complexity of this issue with situations like Complete Androgen Insensitivity Syndrome and Swyers Syndrome (where male fertility just will not happen), I cannot see how the new measure measures up to such claims. Whether CAIS and Swyers are assigned as male or not, fertility is not a relevant issue to be discussing. With 5 alpha reductase deficiency there is this idea that they could be made into "Fertile men"; but I had best avoid stating my opinion on that, it would read like a Thomas Harris novel!
Dr Karkazis continues:
"The second development is the publication of the Clinical Guidelines for the Management of Disorders of Sex Development in Childhood and the Handbook for Parents (3, 4). Outlining a patient-centered model of care, these guidelines were developed in consultation with clinical specialists, affected individuals and their families, and patient support groups."
This is blatantly untrue on two counts. The "Treatment Paradigm" was presented as "multidisciplinary" has always been presented as "multidisciplinary" and was emphasized as such over "Patient centered" and many patient support groups as well as affected individuals said that the "multidisciplinary" approach was basically little more than lots of doctors "prodding and peeping". Secondly this also shows that a lot of patients were ignored. To suddenly claim that this is "patient centered" when it clearly is not, is misleading at best.
"Much remains to be done to improve care for persons and families affected by disorders of sex development. However, these two developments are important steps in that direction."
I disagree,
"Dr. Karkazis reports no competing interests"
Dr Karkazis has simply glossed over said competing interests and indulged in the same damage limitation some in the American medical profession have been doing for years.
Sophia Siedlberg
OII-Spokeswoman in the United Kingdom
