It is a truism of all social reform movements that the message of change has to be constantly repeated and reinforced to ensure it remains in people’s mindsL knowledge is power.
Present-day attitudes toward intersex embodiment did not spring out of thin air. They have a provenance, a history. In order to address how we have got to this place, it is necessary to understand where it sprang from. That means having access to primary sources.
In the context of intersex advocacy, that has always proved extremely difficult. Deliberately so. Clinicians and theoreticians who willingly debate and share information between themselves have always been loathed to share that conversation with a wider audience, except under very controlled circumstances. That situation is slowly changing as more people become willing to question what were once seemingly sacrosanct individuals in the pantheon of clinical knowledge, and subsequently publish their findings.
Current intersex medical protocols are enshrined in a document usually referred to as the Chicago Consensus Statement. As it’s title suggest, this document was written and signed off in Chicago, in 2005. Clinicians felt the need to write, and publish such a formal document as a result of concerted activism and advocacy by determined intersex activists in an effort to change clinical practice toward people born intersex.
Consensus statement on management of intersex disorders
One of the co-authors of that document was Dr Faisal Ahmed, a world renowned intersex clinician, currently based in Glasgow. Dr Ahmed is also the guiding hand behind an organisation call I-DsD. That organisation’s primary aim is to collate as much genetic information from as many intersex people as it can in order to further research into intersex differences.
Both the Consensus Statement, and I-DsD reify medical authority at the expense of the personal autonomy of an intersex individual. The Consensus document saw the introduction of the term DSD – Disorder of Sex Development – a term considered deeply pejorative by many intersex people.
It is impossible to view present-day intersex clinical management today without critiquing the cultural values that inform those beliefs. Money, Wilkins and the Hampsons worked during the era that gave us McCarthy-ism, rigidly enforced gender roles, and American cultural hegemonism. Whilst social values have continued to evolve and adapt, the practices that inform current intersex clinical management would still be quite recognisable to those who wrote the foundation work that set the course of intersex clinical management today.
John Money is often, and erroneously, credited with introducing clitoral surgery to intersex medical procedures. He didn’t, he simply provided the philosophical and structural underpinning that informed surgical practice toward intersex bodily difference, then and now. The clinician who did most to introduce clitoral, and infant genital surgery as an orthodox practice on intersex children was Lawson Wilkins, and he used CAH children to do it, allied to the endocrine management provided by the newly synthesised cortico-steroid cortisone acetate. Both Money, Wilkins and the Hampsons worked @ Johns Hopkins Hospital, Baltimore.
That clinicians rarely mention either Money or Wilkins these days is a salutary lesson in how ethically awkward individuals who dominated a profession can be successfully erased from the picture, whilst their work continues to dominate orthodox thinking.
For an insight into John Money, and his thinking, a new book entitled “Fuckology” should go some way to redressing the balance.
Fuckology: Critical essays on John Money’s Diagnostic methods
Money coined both the terms fuckology, and gender. It should give everyone pause that such ostensibly highly regarded practitioners in their given field could, and did, express such life changing interventions in such banal, and off-hand language. What becomes obvious when reading the these works is the determined and unquestioned homophobia that informs so much of this work. It runs like a thread throughout all of the work described, and still informs intersex practice today. Wilkins gave his name to what is now the Paediatric Endocrine Society – although it is notable that even they have distanced themselves from the name of a man who was comfortable sharing ideas sympathetic to eugenicists.
Wilkins was an endocrinologist, and he pretty much wrote the rules on treating Congenital Adrenal Hyperplasia. In doing so he laid the path for Maria New (who trained with Money – she really is that old) to pioneer the wholesale, unethical and unlicensed use of pre-natal dexamethasone as a means of targeting both anatomical difference and “boyish” behaviour and lesbianism in girls/women with CAH. A paper New write with Heino Meyer-Bahlberg freely speculated on the organic, and/or genetic origin of homosexual/bi-sexual orientation in women with CAH:-
“Clearly, more direct evidence of prenatal sex hormone effects would be desirable. However, experimental variations of the prenatal sex-hormone milieu solely for behavioral research purposes cannot be ethically justified”
and went on to say:-
“long term follow-up studies of the behavioral outcome will show whether [prenatal]dexamethasone treatment also prevents the effects of prenatal androgens on brain and behaviour.”
Clitoral surgery had been a long-time approved method of managing behaviour in children that disturbed parents. The well regarded medical tome Holt’s Diseases of Infancy and Childhood of 1936 recommended cauterising a clitoris as a cure for masturbation. Isaac Baker-Brown is often credited with pioneering the practice of clitorectomy on adult women in the 1870’s, for everything from hysteria to ‘female sexual excess’. ie sexual expression in women; a state of being regarded as highly undesirable in a woman of ‘polite’ society. Money and Wilkins would have been quite well aware of these practices.
Current UK legislation regarding genital surgery, known as IGM – Infant Genital Mutilation – states the following:
A person is guilty of an offence if he excises, infibulates or otherwise mutilates the whole or any part of a girl’s labia majora, labia minora or clitoris.
But no offence is committed by an approved person who performs—
a surgical operation on a girl which is necessary for her physical or mental health.
The Royal College of Obstetrics and Gynaecology lobbied hard for that exemption. No explanation is given for what might constitute that ‘necessity’, thereby leaving clinicians free to continue practising medically un-necessary non-consensual surgery on infants and young children.
Infant genital surgery is still believed to have clinical value when addressing intersex embodiment, even if the reasons for justifying it have changed over time. A book that explores those changing justifications and why clinicians remain implacably determined to continue with these procedures can be found here:-
Fixing Sex: Intersex, Medical Authority and Lived Experience by Katrina Karkazis
To understand how and why American medicine still has such a hegemonic grip on Western values about women’s sexuality, and intersex medicine in particular two books add to the canon of writing about these prescriptive practices :
Bodies in Doubt: An American History of Intersex, by Elizabeth Reis
Female Circumcision and Clitoridectomy in the United States (Rochester Studies in Medical History) by Sarah B Rodroguez
It should give everyone pause for thought that a surgeon (Sarah Creighton) can still write this about infant genital surgeries as recently as 2013:-
“There is also, as yet, no new evidence for significant improvements in long-term post-operative outcomes”.
Parents remain convinced that surgery in infancy is both necessary, and the responsible thing to do. What they always fail to think about what everyone so treated has to live with – the consequences of the mutilation itself.
We all owe a great deal to those early intersex activists who dared to throw a light onto the then secretive workings of intersex clinicians. It is the responsibility of everyone who cares about the human rights of a group of people who have been marginalized to the point of invisibility, to continue to work toward changing those protocols until they address the needs and interests of those who are born intersex, rather than continue to inflict their fundamental inhumanity on individuals who still have no means of speaking for themselves.