STOP Intersex Genital Mutilation in Children's Clinics!

The Swiss National Advisory Commission on Biomedical Ethics has published a much lauded paper titled 'On the management of differences of sex development. Ethical issues relating to "intersexuality"'.
>>> Download in English (PDF) 
>>> German  >>> French  >>> Italian

The report comes after 5 years of political initiatives initiated by Zwischengeschlecht.org, first in state parliaments and thereafter in the federal parliament, always adamant on including multiple members of parliament and covering the entire political spectrum. As a direct result of the federal interpellation in 2011, the Swiss Federal Government requested the National Ethics Commission to write a report, which was recently published. In the introduction, the Commission acknowledged that it is "largely thanks to the efforts of self-help/advocacy groups" that "increasing attention is now being paid to the topic of “intersexuality” in the media and in professional circles – including the fields of medical law and ethics – both nationally and internationally."

Zwischengeschlecht.org as well as the Swiss parents' self-help group participated in hearings of the commission. As Daniela Truffer (Zwischengeschlecht.org) said in her adress on occasion of the presentation of the report: "This is the very first time [in Switzerland], that an official body took the persons affected seriously, listened to their concerns and translated them into concrete recommendations." The pragmatic report was also met with applause internationally, e.g. OII Australia called it 'ground-breaking' and German scholar Heinz-Jürgen Voß titled 'Short, knowledgeable, largely clear'. We were also told by multiple persons concerned that they actually wept while reading the report because they were so moved by its contents.

1. The suffering experienced by some people with DSD as a result of past practice should be acknowledged by society. The medical practice of the time was guided by sociocultural values which, from today’s ethical viewpoint, are not compatible with fundamental human rights, specifically respect for physical and psychological integrity and the right to self-determination.

4. Protection of the child’s integrity is essential. Given the uncertainties and imponderables involved, a psychosocial indication cannot in itself justify irreversible genital sex assignment surgery in a child who lacks capacity.

11. In a case of DSD, it must be possible for the sex recorded in the official registration of births to be unbureaucratically amended. [...]

12. There should be a legal review of the liability implications of unlawful interventions in childhood, and of the associated limitation periods. Questions of criminal law, such as the applicability of offences of assault (Art. 122 and 123, StGB) and the prohibition on genital mutilation (Art. 124, StGB), should also be investigated.

We have no illusions that this report is only a first step, although a significant one. However, unless these recommendations are now translated into political actions and finally legislation, it's obvious that the status quo of unabashed intersex genital mutilations in our children's clinics is bound to continue ...

>>> Full Report in English (PDF)  >>> German  >>> French  >>> Italian

Tiger Howard Devore: "Growing up in the Surgical Maelstrom"

I spent many years in surgery whose purpose was to make me pee at the end of my penis ['Hypospadias Repair']. I’ve had sixteen surgeries on my genitals, and they performed ten operations by age ten, pretty regularly once a year. If they had just left my urinary meatus [pee-hole] where it was, at the base of my penis right by the scrotum, I could have avoided at least twelve of those surgeries.

My childhood was filled with pain, surgery, skin grafts, and isolation. I remember when school vacation came, the other kids went somewhere fun. I went to the hospital during vacation, so I wouldn’t miss too much school. When vacation was over, I would return to school, often not yet healed from the latest surgery. Sometimes I went back to school with tubes coming out of me, and stitches and scars, and I couldn’t walk well.

Each year they performed surgery on me, and I watched and felt how rapidly the surgery would break down each time. They couldn’t have missed it, either—there’s no reason for some of the work that they did on me outside of arrogance or incompetence.

The tube that most men pee through is not made of skin, it’s made of a special kind of tissue that can handle contact with urine, and be continuously moist and warm without breaking down or becoming infected. The tubes that they made for me out of skin from other parts of my body broke down over and over, and I regularly get bladder infections. And I still have to sit to pee. I have never been without fistulae [holes in the penis where the surgery has broken down], and I’ve had the entire tube replaced twice, with large skin grafts. If they had just let me pee sitting down, neither I nor my family would have had to suffer all of that—the expense, the pain, the repeated surgeries, the drugs, the repeated tissue breakdowns and urine leaks. It would have been just fine to have a penis that peed out of the bottom instead of the top, and didn’t have the feeling damaged.

>>> Full Text: • Tiger Howard Devore: "Growing up in the Surgical Maelstrom" (ISNA) 
• In: Hanny Lightfoot-Klein: Children's Genitals Under the Knife, p 172-175
• In: A. Dreger (Ed): Intersex in the Age of Ethics, p 79-82

[...] Furthermore, we are deeply saddened to learn that the dissemination of systematic cosmetic amputations or excisions of clitorises considered ‘too big’ on children in europe is  inextricably linked to both ESPE as a society from its very beginning as well as to prominent individual members like e.g. Andrea Prader or Jürgen Bierich, and that they both are praised and immortalized by scientific prizes bearing their names given out in part by ESPE, despite the fact that e.g. the latter stubbornly advocated clitoral excisions on the basis of ‘scientific proof’ that the removal of a functioning clitoris would cause ‘no harm’ to the persons ability of experiencing orgasms. [1] While we recognise the medical achievements of both ESPE and its members, we feel it is intolerable to not also acknowledge their errors and the lifelong suffering they caused to the people concerned. We feel it is long overdue for ESPE to start a process of coming to terms with the past in order to be able to working towards a better future not tarred by unnecessary suffering and grave human rights violations. [...]    >>> Fulltext 

Excerpts from: Sandra Eder: "The Volatility of Sex: Intersexuality, Gender and Clinical Practice in the 1950s", in: Gender & History, Vol. 22 No. 3 November 2010, pp. 692–707.

Throughout the records, children’s sexuality caused a high level of anxiety in parents, especially as they feared psychological problems.

In girls, special attention was paid to the enlarged clitoris, and surgical reduction or amputation was the usual intervention. Surgeons at Hopkins performed clitorectomies on CAH children who were raised as girls, a procedure that was neither discussed nor questioned in the patient records. (53) In the sixteen cases in my sample where ‘enlarged clitoris’ was listed as one of the complaints, surgeons performed a clitorectomy at the earliest possible time after admission on all but one patient. Hopkins seemed to have had an already existing tradition of clitorectomies that persisted through the introduction of cortisone and Money’s gender concept. (54)

As with boys, a major concern for physicians and parents was frequent erections of large clitorises and masturbation. Physicians regularly inquired after such behaviour and often parents addressed it themselves. This resonates with a longer medical tradition to cure masturbation (and insanity) through clitoral surgery. (55) At the Hopkins clinic, this tradition was combined with the social concern that psychological difficulties might arise from growing up as a girl with an enlarged clitoris or phallus; it would raise doubts concerning her sex and trouble her gender role. Psychological adjustment justified depriving ‘a patient of what some authorities have declared the most significant erotic zone in the female’. (56) Again, the body was thought to be more flexible than a child’s gender role. Clearly, an enlarged clitoris initially was more upsetting to parents and physicians than to the children themselves. (57) [pp. 700-701]

Clearly, CAH’s sexual symptoms, such as ‘virilised’ genitals in girls and precocious genitals in boys, caused anxieties in parents and physicians. Medical/surgical intervention provided a solution to a social problem of ambiguous or precocious sex. [p. 704]

The Hopkins protocols, as the publications that resulted from Money’s study became known, created a sense of emergency that encouraged physicians to assign sex quickly and to alter the body surgically in order to achieve psychological healthiness in children with intersexual conditions. (12) The ethics of these medical interventions have been criticised extensively, as adult patients started challenging the irreversible surgery and culture of secrecy and shame that had permeated their treatment. (13) Money’s thesis that gender was learned was quickly replaced by more biological determinant theories. (14) Nevertheless, the practice of early surgical intervention continues to this day. [p. 693]

Note: These 3 excerpts contain all paragraphs regarding clitoral surgery i.e. amputation of the clitoris within the 13 pages text, which is – surprise, surprise! – exclusively centered around questions of "gender", and does NOT discuss ethics and human rights considerations. 20 years of survivors bearing witness to harmful, non-consensual, purely cosmetic genital surgeries are mentioned exactly once in just 1 single sentence (quoted also above):

"The ethics of these medical interventions have been criticised extensively, as adult patients started challenging the irreversible surgery and culture of secrecy and shame that had permeated their treatment." (13)

As sources, only scholarly publications are given, but – once again – NO testimonies by survivors themselves – not even by scholarly ones ...

NOT once mentioned at all are the various adverse effects of the clitoral surgeries/amputations for the "patients" concerned – an obvious "lack of awareness and attention to the reality of intersex lives [that] biases the presentation of the topic, potentially unintentionally perpetrating the invisibility and objectivation of intersex people" (Koyama/Weasel).

This will not do! "Intersex patients" are human beings with feelings and human rights, who have been greatly wronged by – no matter how well intentioned – unethical "scientists", "doctors", and "researchers", and who are still suffering today. They deserve justice, NOT being served up as guinea pigs for "scientific theories" – again!

>>> Emi Koyama & Lisa Weasel: "From Social Construction to Social Justice" (2002), in:
         "Teaching Intersex Issues. 2nd Ed." (2003) (PDF) 

Next week, in Geneva the UN Human Rights Council (UNHRC) will debate Intersex Genital Mutilations for the first time.

Time is of essence! We are lobbying the UN Missions and other relevant bodies and ask for your support.

Discussion with a participant of 'ISHID 2011' outside of the UCH Education Centre

Daniela "Nella" Truffer and Claudia talking openly about the cosmetic genital surgeries commited on them in childhood and about the impact of these blatant human rights violations on their lives.

Touching clip shot on occasion of the >>> protests against the infamous 'Live Genital Mutilations' perpetrated during the last day of the 'IV ISHID World Congress', London September 17th–19th 2011, by Richard of MenDoComplain. Many thanks! 

>>> Watch the video online      >>> Infopage 'ISHID 2011' Protests

"3rd EuroDSD Symposium" Lübeck, May 21, 2011    --> Open Letter"
(Center: Garry L. Warne, Royal Children's Hospital Melbourne)

For 60 years now, the practice of cosmetic genital surgeries on little children with “atypical” genitals continues. In all these years and decades, the endocrinologists, surgeons and other clinicians responsible for these surgeries couldn’t be bothered to gather evidence for the alledged beneficience of these surgeries, or even to do consistent follow-ups or only disclose statistics, but continue to operate on mere anecdotal evidence.

For 20 years now, survivors of these surgeries oppose them publicly, and consistently criticise them as “immensely destructive of sexual sensation and of the sense of bodily integrity”. For 20 years now, the clinicians concerned refuse to listen, let alone acknowledge these grave concerns.

“There is a serious ethical problem here: risky surgeries are being performed as standard care and are not being adequately followed-up. Intersexuals are understandably tired of hearing that 'long-term follow-up data is needed' while the surgeries continued to occur.”

There are also many reports and statements by Human Rights Advocacy Groups (e.g. Terre des Femmes 2004, CEDAW 2009, Amnesty Germany and Amnesty Switzerland 2010) and publications by experts in these fields (e.g. Hanny Lightfoot-Klein 2003, Fana Asefaw 2005, Nancy Ehrenreich/Mark Barr 2005) clearly stating that non-consented cosmetic surgeries on children gravely violate human rights (particularly the Right to Physical Integrity) and who underline the similarities and parallels between these surgeries and the practice of female genital mutilations.

>>> Full Text: Open Letter of Concern to "3rd EuroDSD Symposium - From Gene to Gender" (Zwischengeschlecht.org) 

"STOP Genital Mutilation in Children's Clinics!" - St. Gallen, February 6, 2011

In 1950, the US-endocrinologist Lawson Wilkins introduced systematic cosmetic surgeries on children with "atypical genitals" at the Johns Hopkins University Hospital in Baltimore. Staying at Johns Hopkins at that time, the Swiss endocrinologist Andrea von Prader introduced this practice in Europe after his return to Zurich in the same year. In 1955, the infamous sexologist John Money at Johns Hopkins published a theory declaring early cosmetic surgeries as (pseudo) standard.

Since the late 1950s, medical guidelines around the globe have been recommending children born with "atypical genitals" a.k.a. "Hermaphrodites/Intersexed/DSD patients" to be surgically "corrected" preferably within the first 18 months of their lives. According to the classic surgeons' motto "It's easier to dig a hole than to build a pole", most of them are "made to girls", although in the meantime urologists increasingly indulge in the "challenge of masculinization".

Today, according to studies by the mutilators themselves, at least 90% of the population born with "indeterminate" or otherwise "unusual" physical "sex markers" were (and still are!) submitted to on average multiple medically unnecessary genital surgeries starting in early childhood, resulting in appallingly high risk of lifelong loss of genital sensation, physical pain and massive psychological traumata.

The cosmetic "treatments" include:

• "corrective surgery", e.g. amputation of the penis/clitoris a.k.a. "clitoral reduction"; "penile recostruction"; "hypospadias repair"; etc.
• carving an artificial "neo-vagina" which has to be dilated permanently
• castration, followed by lifelong hormone "therapy"
• pre-natal hormone "therapy" (introduced in the late 1970s)
• concealing the truth from the "patients"

What these systematic non-consented surgeries actually do FEEL like for the "patients", was never part of the equation, let alone their alleged "benefits" clinically tested. Adult "patients" were simply left behind by the hundreds of thousands.

Arguably, the continuing forced "medical treatments" of children with "atypical" genitals are one of the worst human rights violation perpetrated in the "developed countries" since the end of World War II.

>>> Full Text: Hermaphrodites in the "Developed World": Extermination by Surgery vs. Struggle for Human Rights - Victims of Modernity - 1950: From Experimentation to Extermination - A Human Rights Issue! 

"11th EMBL/EMBO Conference" Heidelberg, November 6, 2010    --> Open Letter

The history of the sciences of sex, gender and sexual differentiation, including amongst other disciplines, biology, endocrinology, genetics, sexology and gender studies, is inextricably intertwined with the history of the medical crimes committed on hermaphrodites (1).

In the last decade, criticism of abuse of hermaphrodites in the name of scientific theories and research started to emerge by the people concerned, aimed mostly at the new discipline of gender studies (2). In the meantime, this criticism is becoming a topic further explored by criticised themselves, however, up to now still considerably hindered presumably by blind spots of the ‚gender lens‘.

On the other hand, detailed criticism aimed at the ‚hard science‘ disciplines seems almost non existent, let alone empathy from the scientists concerned, despite the obvious and close bi-directional relations, i.e. both with regards to the ongoing medical crimes against hermaphrodites and the published data thereof being part of the foundation of these disciplines, as well as new findings within these ‚purely scientific‘ disciplines inevitably being used by the actual perpetrators to justify and perpetuate their bloody deeds.

No one will ever know, how many lives of innocent hermaphrodite children were irreversibly ruined or even lost by medical crimes in the name of science, how many suffered from mutilated and butchered genitals, loss of sexual sensation, constant pain, horrific scars, massive trauma, suicide, to name just some of most obvious consequences.

>>> Full Text: Open Letter of Concern to 11th EMBL/EMBO Science and Society Conference 'The Difference between the Sexes - From Biology to Behaviour' (Zwischengeschlecht.org)

As survivors of non-consensual childhood surgeries, as well as persons concerned grateful for having escaped such surgeries, we are very saddened and concerned about how, as far as we can see, an overwhelming majority of the speakers and Chairpersons at the ‘IV World Congress on Hypospadias and Disorders of Sex Development hosted by the International Society for Hypospadias and DSD (ISHID)’ seems to refuse to listen to their former patients, and instead continue to advocate and perform medically unnecessary cosmetic genital surgeries on children no matter what the consequences for these children. We deeply regret that the Royal College of Surgeons of England, the Great Ormond Street Hospital for Children and the University College Hospital Education Centre take part in such a questionable endeavour, including the infamous ‘live surgeries’.   >>> continued 

>>> Infopage 'ISHID 2011' Protests           >>> Video 'Three Vigils' (10:24)  
>>> Flyer A4 (PDF 1.7MB) - TRIGGERWARNING!
>>> Open Letter to 'ISHID 2011', RCS, GOSH, and UCH

Open letter of concern by Zwischengeschlecht.org on occasion of the '1st Joint Meeting of the EAU Section of Female and Functional Urology (ESFFU) and the EAU Section of Genito-Urinary Surgeons (ESGURS)' incl. 'live surgeries', Tübingen (Germany) October 6–8 2011:

'We deeply regret that the Eberhard Karls Universität Tübingen, renowned for its Internationales Zentrum für Ethik in den Wissenschaften (IZEW), the Universitätsklinikum Tübingen (UKT) and the European Association of Urology (EAU) take part in such a questionable endeavour, including the infamous ‘live surgeries’, which also regularly have been taking place during the I-IV Symposium für Rekonstruktive Urologie held in Tübingen earlier.'   >>> Full Text 

>>> Photoreport of Protest #1 by Behzad on demotix – Thanks!

Today marks the beginning of the 'IV. World Conference of Genital Mutilators in Children's Clinics' a.k.a. 'ISHID 2011' at the Royal College of Surgeons, picketed by survivors remembering the victims and commemorating 15 years of peaceful protests against their tormentors.

During their first peaceful vigil today, the former victims will remember the first public protest by survivors against the mutilators organised by the Intersex Society of North America (ISNA), when 'Hermaphrodites with Attitude' took to the streets picketing the Annual Meeting of the American Academy of Pediatricians in Boston on October 26th 1996.   >>> continued 

>>> Video 'Three Vigils' (10:24)     >>> Flyer A4 (PDF 1.7MB) - TRIGGER WARNING!!!
>>> Open Letter to 'ISHID 2011', RCS, GOSH and UCH