A Conspiracy of Deceit: Alice Dreger, ISNA, the invention of DSD and Dix Poppas of Cornell who cuts up intersex babies’ clitorises

By on .

Author:

Gina Wilson, President, Organisation Intersex International Australia Limited

ACADEMIC bioethicist Alice Domurat Dreger has been complaining about Cornell University’s Dr Dix P. Poppas’ practice of cutting up the clitorises of intersex children with CAH – Congenital Adrenal Hyperplasia – then stimulating their mutilated sex organs with an instrument not unlike a vibrator. Yet Dreger and her former colleagues at ISNA – the Intersex Society of North America – were primarily responsible for inventing the new terminology and the consensus which pathologize such sex variations and permit abuses against intersex newborns by doctors like Poppas. Gina Wilson investigates.

Introduction

I have had my attention drawn to a series of articles recently written for ethical and psychological journals by the historian and bioethicist Alice Domurat Dreger. Ms Dreger is heavily critical of certain medical professionals for conducting what she considers unethical treatments of intersex children and pregnant mothers thought to be carrying an intersex child. Ms Dreger is coy about using the word intersex and I think I know why.

Although Alice Dreger is coy about using the word intersex or even the words of her own invention that have been used in medicine to replace intersex with a wholly new terminology – Disorders of Sex Development (DSDs) – Drs Yang J., Diane Felsen and Dix P. Poppas – are not so bashful. All work at the Institute for Pediatric Urology, New York Presbyterian Hospital, Weill Medical College of Cornell University. Dr Maria New is also from Cornell.

Behind closed doors, far from the madding crowd.

Outrageous medical behavior

CONSIDERING the outrageous behavior by these clinicians it is important to know what enables their behavior beyond the usual acceptance of the necessity of scientific investigation and pitiful, often misplaced, trust that we have with our medical specialists.

Poppas et al have not embarked on an isolated or especially outstanding path in their treatment of intersex. The kinds of treatments they espouse have been conducted, predominantly, since the fifties but at least since the turn of the twentieth century.

Poppas cites the work of John Money – http://jcem.endojournals.org/cgi/content/abstract/16/4/547 – in his references and we take it that means he regards Moneys’ advocacy of this kind of sex and/or gender binary reinforcement by means of surgery upon the genitals of intersex newborns as influential despite very strong criticism in recent years of Money’s tabula rasa theories about an individual’s sex.

See Ethics and Intersex by William G. Reiner , p155.

During the 1950s an idea was formulated that gradually evolved into a clinical paradigm. This idea encompassed the notion that sexual identity is plastic in humans, at least in the newborn and early childhood periods.

The development of such identity, it was argued, depended upon sociological forces that determine a child’s sense of self in sexual terms; thus, if the child were reared as a given sex and if the child’s genitals were or that sex, then the child would experience psychosexual development typical of that sex. Matter, at least as formulated in terms or development, could determine Mind: the brain was but an object for behavioral engineering. Fundamental to this argument was the notion of human identity, and specifically sexual identity, as a tabula rasa, a blank slate, in the newborn. (Money, 1972)

How this conception wound its way out of the trends and trajectories of 20th-century socio-psychological dualism and its relationship to post-Enlightenment historicism are well beyond the scope of this manuscript. It is important to recognize, however, that this idea, or model, construed identity as it social construct that is at once plastic and malleable at birth but also permanent and constant at some later (though unclear) period.

See Ethics and Intersex by William G. Reiner , p155.

The work of Drs Creighton and Minto is likewise cited, however so far as Poppas’ reasons and methodology are concerned we take it that work of the two British doctors was completely ignored – http://www.ncbi.nlm.nih.gov/pubmed/12699952 and http://www.bodieslikeours.org/respdf/0403bjui.pdf.

Sex assignment by genital surgery also represents an experiment involving invasive, risky and irreversible intervention. We are unsure how the absence of rigorous evaluation of the intended outcome could ever have been justified in interventions with such grave consequences, but overconfidence in the past has left the current generation of clinicians and patients floundering with uncertainties. Research in recent years and expected changes in reproductive technology and tissue engineering make clinical management more uncertain than ever. The clinician’s choice is stark; to share the diverse opinions with patients and parents and assist them to develop their own responses, or pretend to certainty and intervene before they learn what questions to ask.

Above all, patients, parents, practitioners and scholars in many disciplines are also experts in intersex. Future consensual statements must include service user, legal and ethical representation, as well as input from experts in sexual development and overall psychological and family functioning. It is not for the medical profession itself to decide behind closed doors on behalf of society how to seal the fate of persons with nonstandard genitals.

That aside, Poppas’ need to have infants physically conform to sex and/or gender binary expectations is more deeply rooted in the notion that intersex differences are an illness, a medical condition and as their article makes plain, a disorder.

A “medical condition” in search of a “cure”?

THE notion that intersex is a medical condition in need of a cure has a long pedigree stretching back at least to the life of Herculine Barbin in the 1850s.

The theory has always been that although our sex may appear to be unknown or inconclusive, our “true sex” can be discerned by close examination. Examinations in the time of Barbin were a ‘touch-up’ conducted beneath a blanket by a suitably qualified medical practitioner. These days it extends to genetic testing, scans, blood tests and internal examinations. When our “true sex” is finally decided then it is carte blanche for sex confirmation surgery and medicine pulls out all stops.

Alice Dreger, the lead reporter in this controversy, does not come to this with unsoiled hands. For many years Ms Dreger was amongst the leaders of the Intersex Society of North America which has been defunct since 2008, as noted on their home page. ISNA’s website is still one of the most referenced sites on intersex, especially by journalists who do not seem to have read below the first couple of paragraphs. Journalists continue to quote from the website in the belief that ISNA remains a going concern working on behalf of intersex people everywhere.

To understand how intersex people were duped, disposed of and disregarded by the activities of the ISNA and how intersex was reinvented as a diagnosis to be cured, one has to appreciate the situation that intersex people were in circa 1990.

Isolate, divide and conquer

FIRSTLY there was little public access to the Internet. This is a critical element given that intersex people have been raised in isolation from each other, and the boundaries of that isolation are reinforced with shame and secrecy. That reinforcement comes from immediate family members and extends to the world at large.

It remains common for intersex individuals to imagine that they are alone in their differences or at best are very, very rare and unusual people. The 1:2000 statistical lie that is commonly used to numerate intersex people reinforces the idea that, in the general population, intersex is not a big issue and that the individuals so defined are a tiny and rare part of human variability.

Anne Fausto-Sterling puts the figure of intersex prevalence at around 1.7% and in doing that only enumerates hospital statistics. Intersex people unknown to medicine will inflate that number and may very well inflate it considerably.

There is good reason to suppose that the blooming of the Internet has been crucial in the rise of intersex activism – http://www.amazon.com/Online-Intersex-Communities-Neighborhoods-Activism/dp/160497592X/ref=sr_1_2?ie=UTF8&s=books&qid=1278301301&sr=1-2>

There were no intersex groups as such and those groups that did exist that had some element of intersex in them were, by and large, diagnosis groups populated by parents, doctors and middle class handwringing do-gooders.

The first to use the word intersex in its name

THE Intersex Society of North America (ISNA) was amongst the very first organizations to openly use the word intersex in its name just as its immediate forbear Hermaphrodites with Attitude was the first to unashamedly use the term ‘hermaphrodite.’

Thousands of intersex people around the world came to hear of the ISNA because of its use of the word intersex, and they brought their histories, their tragedies and their hopes to that organization. Until around the year 2000 there really was no alternative for intersex people seeking information and support.

The ISNA started out as a group of grassroots intersex activists called Hermaphrodites with Attitude – http://glq.dukejournals.org/cgi/pdf_extract/4/2/189 – protesting in front of a hospital against the intersex surgeries going on inside – http://www.isna.org/faq/history.

By 2001 ISNA had become a society that consisted in the main of medical experts and academics with no physical address, no notice boards, no outreach and no way of joining.

Where is ISNA located? Nowhere! Seriously, ISNA is a virtual organization; with activities being carried out in many locations throughout the country. Our staff, volunteers, and board interact on a daily basis via intranet, trouble ticketing system, email, and telephone (and occasionally even in person!).

http://www.isna.org/faq/printable

ISNA’s incorporation documentation tells a different story, with a physical address for the organisation as it is a legally required part of the incorporation process in the United States. ISNA volunteers such as Emi Koyama – http://www.intersexinitiative.org/index.html – who worked with the ISNA as interns attended a physical address. There was, in fact an actual physical address for ISNA and it was in Michigan – http://www.intersexualite.org/ISNA_Documentation.html – the home address of Bo Laurent aka Cheryl Chase and her partner Robin.

Avoiding confrontation and embarrassment

WITH ISNA disencumbering itself from a publicly known physical location the organization avoided the embarrassing possibility of intersex individuals turning up on their doorstep with protest banners and petitions demonstrating against the actions they were apparently taking on behalf of intersex.

ISNA had learned from its early activism that physical locations mean a place to protest.

By the time ISNA shut its doors for business and transferred all its assets to the Accord Alliance the ISNA had a membership of 47 people with only 8 intersex individuals amongst them. ISNA’s medical advisory board of 26 had no intersex inclusion although it included one psychiatrist, some psychologists, two ethicists, a philosophy of religion professor, a social worker or two and quite a few pediatric endocrinologists. It seems that everyone is an expert on intersex except intersex people ourselves.

ISNA’s own intersexphobia

BY 2001 the leaders of ISNA and Alice Dreger had some concerns about the use of the word intersex.

The ISNA was always overly anxious to point out that intersex was not a sexual orientation and had nothing to do with transgender or transsexualism, so much so that they went to some lengths to screen applicants for “true intersex” status – http://www.sfweekly.com/2007-10-03/news/what-intersex-local-hida-viloria-didn-t-tell-oprah-how-hermaph-tivists-pander-to-homophobes/.

Dreger found intersex problematic because the term “was an identity that was pretty firmly associated with queer rights, in part because most of the early intersex activists [http://www.isna.org/videos/hermaphrodites_speak] came out of a queer rights consciousness. It was also because queer activists tended to really understand intersex issues, so we allied with them.”

And:

When you use the term “intersex” even the most sane, smart, pro-intersex-rights docs and patient advocates can’t seem to agree on which conditions count. To state the obvious, if you can’t get people to agree on what you’re talking about, you can’t get anywhere. I was spending so much energy playing the “Is CAH intersex? Is AIS intersex? Is hypospadias intersex? Is Klinefelter Syndrome intersex?” name game that I couldn’t get people to talk about the (problematic) clinical practices that all these conditions had in common.

As well as:

[Parents] didn’t want to talk about care for “intersex” people because they felt about the term the way we felt about the term “hermaphrodite” – that it was a pathologizing misnomer.

In truth, what Dreger came up against was the same prejudice that is still at large today:

But that word [intersex] alienated many parents of affected children, as it suggests a self-conscious alternative gender identity and sexuality.

http://muse.jhu.edu/login?uri=/journals/perspectives_in_biology_and_medicine/v050/50.4reis.html

Parents who have a newborn with intersex genitals are often shocked by the news and associate the differences with homosexuality – “does that mean my child is gay?”

http://muse.jhu.edu/login?uri=/journals/perspectives_in_biology_and_medicine/v050/50.4reis.html

Internalized homophobia and intersexphobia

LIKEWISE, adults who learn later in life they have intersex differences often react homophobically to the news. These are people who may have lived all of their life as understanding queer and gay as being unacceptable. The news that their body is somehow queer can provoke internalized homophobia and self-loathing.

Dreger herself, despite protesting to the contrary and sounding somewhat inclusive in her writing, has associated herself with and defended the pathologizers of homosexuality and transsexualism – http://www.springerlink.com/content/0753m756162q4236/ – and those who would seek to cure them – http://www.isna.org/node/153. Note the presence of both Sheri A. Berenbaum – lesbian researcher – and Maria New MD – lesbian curer – on the board of this initiative.

The written works of Berenbaum and New are at:

Associating intersex with homosexuality

THE strong association between intersex and homosexuality is nothing new. As we noted earlier it has been present at least since Herculine Barbin was ‘diagnosed’ as ‘male’ following her illicit affair with a fellow woman school teacher – http://en.wikipedia.org/wiki/Herculine_Barbin.
Alice Dreger and her associates at the ISNA seem to have decided that, rather than tackle the homophobia rife in white middle class America, changing the terminology around intersex would be the easier course.

I say white middle class America because when a review is done on the membership, the advisory panels, the medical professionals needing to be convinced, the diagnostic groups like AISSG, CARES and Klinefelter Syndrome (KS) associations, the thing that stands out head and shoulders is that the overwhelming majority is white middle and upper-class and English-speaking.

It seems, then, by her writings that if Dreger is not the inventor of the combination of words Disorders of Sexual Development (DSD) then she claims invention in their current sense and usage:

Not that Dreger deserves all of the credit. To be fair this was an ISNA initiative and, however it was driven by Ms Dreger the ISNA may have been at the time, this would not have happened without the acquiescence of the board and those amongst the membership that were aware of what was going on. We have no knowledge if these ideas were ever voted on by the board or ever put to the membership. At least one ISNA member, David Iris Cameron, made his objections clear just before the ISNA closed its doors. (Reported in Divergence or Disorder?: the politics of naming intersex.)

So, in the year 2000, the ISNA was included in a taskforce that they had long lobbied for – http://www.isna.org/node/153.

ISNA joins the establishment and manufactures consensus

THE aim of this task force, called the North American Task Force on Intersex (NAFTI), is as follows:

NATFI brings together specialists in surgery, endocrinology, psychology, ethics, psychiatry, epidemiology, genetics, public health and representatives of intersex patient advocate groups. With the participation of representatives of the Intersex Society of North America and the AIS Support Group, the Task Force is the first decision-making body on intersex medical care to have included intersex patient advocates. “We are committed to achieving consensus on these all-important patient care issues.

… NATFI convener Ian Aronson.

The word consensus in connection with intersex was now at large. This loose affiliation was to evolve into the Chicago Consensus group. Most of the participants in the NAFTI, save for the intersex participants, would go on to be a part of or supporters for the work of the consensus group.

See list of participants in both documents – http://adc.bmj.com/content/91/7/554.extract and http://www.isna.org/node/153.

ISNA in lockstep with the antagonists of intersex

THE ISNA and its few intersex members were now in lockstep with the medical profession on the terminology and medical paradigms used in reference to intersex. No other intersex individuals were included and no references to the seven or eight billion human beings who inhabited the less-than-white non English-speaking world were made.

It is as if universities and hospitals only existed in Europe and America.

So intersex is moved from the radical writings and drawings by intersex people in the ISNA magazine Chrysalis in 1997, to an organisation where intersex are a silent minority in 2000 – http://www.isna.org/books/chrysalis/from_the_editors.

ISNA’s ultimate betrayal of intersex

BY 2006 the scene was set for the ultimate betrayal of intersex and all of those who had come to depend on the ISNA to stand up for the rights to stop non-consensual surgery on the genitals of intersex infants, to show the world there is no shame in being intersex, that we are simply different and not a disease in need of a cure.

The scene was set for those things that have recently been reported in the Hastings Journal and other places by Ms Dreger to happen. Her chickens were coming home to roost – http://www.thehastingscenter.org/Bioethicsforum/Post.aspx?id=4730&blogid=140&terms=dreger+and+%23filename+*.html.

The ISNA misuse of medical terminology

HERE I must take the opportunity to correct Ms Dreger who appears to be under the illusion that intersex is a medical term. It is not – it is a scientific term coined by Richard Goldschmidt in 1901 to describe non-hermaphrodite differences in sex anatomy.

Intersex remains the scientific term used to describe differences of sex anatomy. New terminology such as Disorders of Sex Development is a medical term and is only used in reference to human beings. For all of the rest of nature, even for humanity outside of medicine, intersex is the agreed terminology. Nature and naturalists are not quite as phobic as humans.

Medicine has persisted with the use of the word hermaphrodite and similar terms right up to the present. Intersex was more frequently used in medicine from the 1980s onwards when someone in the medical establishment decided to do some science for a change.

It is a mistaken view of our medical practitioners that they are somehow scientists. Few are trained in the scientific method and none have a doctorate in the sense of those doctors who have to write a scientific thesis to qualify for that appellation.

Doctors are well-qualified technicians and not scientists. In my view the mistaken assumption that medical practice is science is at the root of the problem. Medical practice is often based on science. However, it is not scientific in and of itself. Anyone with close association to illness and with a slight knowledge of science knows the scientific method is the last thing that they will see.

Please refer to:

Evidence-based medicine, case-based medicine; scientific medicine, quasi-scientific medicine. Commentary on Tonelli (2006), Integrating evidence into clinical practice: an alternative to evidence-based approaches. Journal of Evaluation in Clinical Practice 12, 248 – Miettinen – http://www.ncbi.nlm.nih.gov/pubmed/16722904 and http://www3.interscience.wiley.com/journal/123226092/abstract.

ISNA’s strategic failure

THE ISNA, by always regarding intersex as a ‘condition’ and identifying it with medical diagnoses, were in the pockets of the controllers of the diagnoses. ISNA always thought that it could resolve the issues surrounding intersex by addressing the medical profession, by educating them and by relying on their willingness to see sense.

This strategy has failed spectacularly and tragically for intersex people and all who depended on the ISNA to see human rights and full human dignity restored to those of us who were born with differences of sex anatomy.

‘Sex assignment’, ‘gender’, ‘male’ and ‘female’ were never medical issues and never will be. They are socio-political issues and only a legal and political solution will remedy the discrimination and lack of human rights under which all intersex people labour.

Medicine’s own failures

MEDICINE has had one hundred and fifty years to convince the world that intersex people are entitled to full human rights protection, to protection against discrimination and vilification and to inform the world there was physical proof that there was more to being human than being male or female.

Medicine has long had the opportunity to educate the world about sex differences and especially intersex and to assure people it was perfectly okay to be intersex.

Medicine has never done this because medicine was always the problem. Medicine did not come to intersex as scientists, devoid of prejudice while seeking knowledge and being prepared to accept the truth of their observations, in the way that Charles Darwin did.

Medicine came to intersex full of the same fear, loathing and prejudice as its lay patients and, as is evidenced by the works of Poppas and Berenbaum, often as unreconstructed homophobes.

ISNA completely sells out

BY 2006 the ISNA was a part of and supporters for a conference held in Chicago called the Consensus Statement on the Management of Intersex Disorders. The aim of the conference was to find an alternative word for intersex and the reasons they gave for doing this was “terms such as intersex, pseudohermaphroditism, hermaphroditism, sex reversal, and gender based diagnostic labels are particularly controversial. These terms are perceived as potentially pejorative by patients, and can be confusing to practitioners and parents alike.”

The use of the new term Disorders of Sex Development (DSD) was supposed to achieve an “additional rationale for new classification is the need for modern categorization to integrate the modern molecular genetics aspects, to maximize precision when applying definitions and diagnostic labels, and to meet the need for psychologically sensitive yet descriptive medical terminology. Nomenclature should be flexible enough to incorporate new information, robust enough to maintain a consistent framework, use descriptive terms, reflect genetic etiology, accommodate phenotypic variation spectrum, and be useful for clinicians, scientists, patients, and families. Hence, we propose a new classification.” – http://pediatrics.aappublications.org/cgi/content/full/118/2/753

In other words, make intersex a wholly medical terminology remote from old feelings of sex ambiguity and homophobia and embrace the more comfortable idea of a disease that might be amenable to a cure.

Dreger’s false declarations

NOW if anyone can remember, Ms Dreger, the proposer of DSD, has already declared that intersex is a medical term:

As an aside, let me just note that there was a built-in irony to early intersex rights activists using the term “intersex,” since intersex was until that time pretty much a medical term, and one of the chief goals of intersex rights was de-medicalisation.

http://www.alicedreger.com/dsd.html

Well no, Ms Dreger – as noted earlier intersex was a scientific term, not a medical term. The term she is proposing to replace intersex with, DSD, it is even more medicalized, being the child of a medical symposium.

Where intersex can be seen as differences of sex anatomy there is no doubt that when using DSD we are referring to a disorder and a sex disorder at that. There is no misunderstanding about the medical nature of intersex differences and the need for medicine to address and help with those differences as explained in their document.

DSD may carry stigma. Environmental and cultural factors influence gender role (gender-change frequency differences in 5 -RD2 deficiency in different counties). Religious, philosophical, fatalism, or guilt viewpoints influence parents’ actions. In some societies, female infertility precludes marriage, employment prospects, and economic independence. Poverty impairs access to health care.

Standard-of-care concepts for best clinical management of DSD include a gender assignment for all; avoiding gender assignment before expert evaluation in newborns; open communication; multidisciplinary-team evaluation and management; family/patient participation in decision-making; respect and attention to patient/family concerns; and strict confidentiality.

Consensus Statementhttp://adc.bmj.com/content/91/7/554.extract

Now we are in a position to see just why Poppas, Berenbaum, New and many more like them around the world are able to depend on this document. A document proposed by an organization with the full support of the ISNA using a term invented by their then leader.

Poppas, who is so roundly condemned in Ms Dreger’s article in the Hastings Reporthttp://www.thehastingscenter.org/Bioethicsforum/Post.aspx?id=4730&blogid=140&terms=dreger+and+%23filename+*.html – is only doing what was recommended in the Consensus document:

A core team ideally includes pediatric endocrinologists, surgeons, urologists or gynecologists, psychologists/psychiatrists, geneticists, neonatologists, social workers, nurses, and medical ethicists with communication with the primary care physician. Consensus regarding diagnosis, gender assignment, and treatment options must be reached before making recommendations, with one team member primarily interacting with the family. The surgeon’s role involves outlining surgical sequences and consequences of aligning genitalia for assigned gender, establishing functional genital anatomy, and, if indicated, timely gonadectomy. Support groups can play a positive role.

And indeed following up with the use of a vibrator on a six-year-old child is addressed by this:

Sexual functioning, psychosocial adjustment, mental health, quality of life, and social participation are understudied…

And:

Hence, decisions should be made with the families’ full input and consent.

And this:

Rationale for early reconstruction includes beneficial effects of estrogen on infant tissues, avoiding complications from anatomic anomalies, satisfactory outcomes, minimizing family concern and distress, and mitigating the risks of stigmatization and gender-identity confusion of atypical genital appearance.

And, for now, this:

Feminizing genital surgery involves external genitalia reconstruction and vaginal exteriorization, with early separation of the vagina and urethra. Clitoral reduction is considered with severe virilization and performed in conjunction with common urogenital sinus repair. Vaginal dilatation should not be performed during childhood. Refinement is generally necessary at puberty. Procedures should emphasize functional cosmetic appearance and be designed to preserve erectile function and enervation.

There is much more documentation that Poppas and his colleagues could rely on to justify his treatments as being within the law, as operating under a medical protocol agreed to by the most powerful hospitals and endocrine organizations in the world. It has all the appearances needed to be a legitimate legal source of justification of the unjustifiable.

CAH is drawn into the mess

BUT wait, there is more. A product of the DSD consortium was the protocols that were invented to address children with Congenital Adrenal Hyperplasia (CAH).

In the old days CAH was considered to be the most common underlying diagnosis of intersex differences. Not so these days. Because the children being operated on and sexually stimulated have two X chromosomes then they are repeatedly referred to by Ms Dreger as “little girls”. Not happy outcomes for those children if they grow up to be boys as some CAH XX children do.

The guidelines found in the Consensus Statement on 21-Hydroxylase Deficiency from The Lawson Wilkins Pediatric Endocrine Society and The European Society for Paediatric Endocrinology – http://jcem.endojournals.org/cgi/content/full/87/9/4048 – give the following advice:

Newborn screening is sufficiently specific and sensitive to detect almost all infants with classical CAH and some infants with non-classical CAH (NCCAH). Sampling of blood spots should be performed, ideally between 48 and 72 h[ours] of age, and sent to the screening laboratory without delay.

Then this:

Prenatal treatment has been advocated for fetuses at risk for classic CAH but is not appropriate for non-classic.

With this warning:

Treated mothers experience greater weight gain, edema, and striae than untreated mothers, but present data do not show increased risk of hypertension or gestational diabetes.

And as for baby?:

Genital surgery: The decision about surgery should be made by the parents, together with the clinical team, after complete disclosure of all relevant clinical information and all available options have been discussed and after informed consent has been obtained. The goals of surgery are: 1) genital appearance compatible with gender; 2) unobstructed urinary emptying without incontinence or infections; and 3) good adult sexual and reproductive function.

The parents, of course, are not put in contact with intersex adults, especially those intersex adults for whom the assignment was wrong or for whom the surgery was inadequate.

Ms Dreger herself has said that “I have never met an intersex adult who was entirely happy with their surgery” – http://www.alicedreger.com/home.html [reported in Fixing Sex, Karkazis: Duke University press 2008]

Based on recent clinical experience, the recommended time for surgery is at age 2-6 months; although, at present, this is not universal practice. It is important to note that surgery at this stage is technically easier than at later stages.

And for those operated on:

Revision vaginoplasty is often required at adolescence, and the timing should be decided with the patient and family.

And in the end:

There should be close cooperation between centers to broaden experience, to audit results, and to allow adequate evaluation of outcomes. We acknowledge that there are concerns about early surgery. However, surgical techniques have improved. We urge caution in judging outcome from outdated procedures. Systematic studies are needed to evaluate ultimate function for all girls undergoing surgery.

Medicine’s pathologization mitigates against intersex human rights

THE people complained of in the articles by Alice Dreger, Jennifer Yang, Diane Felsen, and Dix P. Poppas and in another place Maria New were doing no more than following the guidelines set down in the very procedures Dreger approved of under the terminology of her own invention, Disorders of Sex Development (DSD).

The pathologizing of intersex by the medical profession has been and continues to be a major impediment to intersex rights. It is also responsible for holding intersex in a disease model and preventing society from considering intersex as differences in the same way height and eye colour are differences.

The attempt to completely disempower the intersex rights movement by pathologizing us as Disorders of Sex Development (DSDs) or, in earlier parlance, as suffering from an intersex “condition” was always bound to end up having intersex children treated by medicine as an illness in need of a cure.

The pathologization of difference

INTERSEX has never been a medical condition, disease or disorder.

Intersex has always been a sociopolitical phenomenon in nature in the same way that differences in skin color, ethnicity, sexuality, gender and other human traits are considered to a lesser or greater extent to be unpleasant or objectionable. Nearly all of these differences have, at one time or other, been the subject of social reconditioning or even medical experimentation as a way to affect a “cure.”

The impetus to introduce an alternative nomenclature for intersex was flawed from the start. However, given the aims of all of those in ISNA who once championed a new wave of medical understanding that would blossom under the more encompassing and precise descriptor, DSD, they must surely by now concede that the enterprise was a complete and utter failure.

ISNA morphs into the enemy

IN 2008 the ISNA closed its doors and transferred its funds to a new body, the Accord Alliance, an organization set up to promote the new DSD terminology and the medical protocols it embraces – http://www.accordalliance.org/.

The Accord Alliance participated in and promoted a conference in Toronto that addressed intersex and intersex children under the new terminology – http://intersexnews.blogspot.com/2009/10/toronto-hosts-pro-surgery-conference.html.

The conference included interactive videos of an intersex child being surgically altered –
http://www.ishid.org/ISHID%20Congress%20Flyer.pdf – and – http://my.clevelandclinic.org/urology/courses_preceptorships/ishid.aspx.

So far as we know, Poppas was one of the surgeons involved in this conference.

Why has Dreger been so recalcitrant?

WE wonder why Ms Dreger has taken so long to complain about all of these things. The work of Poppas, New et al is work that has been taking place since at least 2000, the year that ISNA decided to be a part of the NAFTI alliance.

The avoidance of the word intersex by the Accord Alliance and all of the old ISNA alumni simply takes the focus off what these folk are up to and disempowers intersex.

From Hermaphrodites with Attitude protesting in front of a hospital to endorsing interactive intersex surgery in front of surgeons within ten years.

I call on those who once championed the Hermaphrodites with Attitude, those who peopled the Intersex Society of North America (ISNA) and those medical practitioners who, with an honest heart, hoped for better things for intersex to now concede the complete and utter abject failure of their enterprise.

It is time to confess that you have left intersex people worse off than when you found us. In those early days we at least had a champion for our cause, we at least had like bodies to socialize, compare and complain with. We had the most powerful and globally pervasive intersex organization that had ever existed.

You left us as you found us – without rights, without legal protection against discrimination and vilification and as the experimental playthings of medicine and its eugenicists and vivisectionists.

You should have been speaking to lawmakers and judges, not doctors, and if there were a decent bone in your body then you would do that right now.

Further reading: