The United States has been in the vanguard of writing and influencing intersex medical protocols since the 1950’s, and it has been so since J Money wrote his hypothesis that sought to justify non-consensual, pre-emptive surgical and other medical interventions on people born intersex. The currently adopted protocols have only served to reify those orthodoxies. What is said and done in the US concerning intersex issues reverberates around the world.
The Consensus Statement on the Management of Intersex Disorders has been described in glowing terms by a number of clinicians, as a gold standard in how to justify and enact medical interventions toward people born intersex. It’s language inculcates the pathologising of diversity in human development. How that document came about remains mired in controversy. Those events can be more readily understood by reading the letter sent to the Journal of Pediatric Endocrinology and Metabolism, in 2005. The Consensus document has been the premier guide du jour for clinicians in intersex medicine for a decade.
In the adopted 2006 document can be found a recommendation that a Multi-Disciplinary Team – MDT – be formed to address the situation in which an intersex person presents in a clinical environment. Amongst the surgeons and endocrinologists present, a psychologist is also described as an important member of the team, many of whom are members of the APA – the American Psychological Association.
During 2013 the UN Special Rapporteur on Torture, Juan Mendez, issued what has become a landmark report detailing the torture and other cruel, inhuman or degrading treatments protocols and interventions directed at intersex and trans individuals by clinical authority.
The report recognised that intersex people are subject to non-consensual medical treatments. It called for an immediate end to forced sterilisation, forced hormone treatments, and genital surgeries, saying:
76. … There is an abundance of accounts and testimonies of persons being denied medical treatment, subjected to verbal abuse and public humiliation, psychiatric evaluation, a variety of forced procedures such as sterilization, State-sponsored forcible … hormone therapy and genital-normalizing surgeries under the guise of so called “reparative therapies”. These procedures are rarely medically necessary, can cause scarring, loss of sexual sensation, pain, incontinence and lifelong depression and have also been criticized as being unscientific, potentially harmful and contributing to stigma (A/HRC/14/20, para. 23).
77. Children who are born with atypical sex characteristics are often subject to irreversible sex assignment, involuntary sterilization, involuntary genital normalizing surgery, performed without their informed consent, or that of their parents, “in an attempt to fix their sex”, leaving them with permanent, irreversible infertility and causing severe mental suffering…
In the entirety of the time that the Consensus Statement has been in place as the so-called gold standard of care for people born intersex, it is now becoming clear that the APA’s President and Ethics Director operated to a re-written rulebook of ethical standards that absolved it’s members from participation in, or practice of torture.
The APA leadership worked hand-in-glove with the United States Department of Defense (DOD) and Central Intelligence Agency (CIA) to dictate and pass a policy document intended to justify and protect psychologists, despite laws and professional ethics designed to prevent exactly that behavior. Psychologists who may themselves have a total and complete antipathy to torture and human rights abuses were absolved from personal responsibility by the very organisation that publicly claimed the highest standards of professional probity. It is only as a consequence of this report that those abusive regulations have been taken down, this week.
Juan Mendes, the UN Special Rapporteur on Torture described the effect of intersex protocols as:
The mandate has noted that “members of sexual minorities are disproportionately subjected to torture and other forms of ill-treatment because they fail to conform to socially constructed gender expectations”
The initial report into the conduct of the APA, by a former US Federal prosecutor, David Hoffman, is damning. It is becoming clear that the APA is no longer fit for purpose, and should play no further part in adjudicating, or participating in the furtherance of intersex protocols on individuals who continue to be denied a right to speak for themselves.
The question of ethics in intersex medical situations was addressed in 2010 by Emi Koyama, in their seminal article Why I am Suspicious of Bioethics. That article critiqued the continuing use of pre-natal dexamethasone to alter the behaviours and anatomies of girl children born with CAH, whilst all the time declaring it safe to parents. This use continues despite it being described by the Endocrine Society as:-
Not a standard of care, and experimental
The protocols that govern and justify pre-emptive medical interventions on people born intersex have been repeatedly shown to be a fabrication of prejudices built on artificial notions of sex, and gender, and infused with a deeply homophobic motivation – presuming heterosexuality as the expected outcome after surgeries. They are also known to induce deep trauma in many intersex people who endure these non-consensual procedures.
The protocols should be rescinded, and replaced by an acknowledgement that those with the most interest in these procedures, people born intersex, should have the right to decide for themselves when or if they engage with medical intervention. We are all of us entitled to the human rights of bodily integrity and personal autonomy. Being born intersex makes no difference to that basic tenet of life. It’s continued denial is a fundamental abuse of an intersex individual’s humanity.