Children have opinions too, but it is rare that they have ever been given an opportunity to express it – Joan Hampson
Long ago, but not so long ago that it is beyond living memory there existed an era during which being intersex was officially denied, whilst all the while doctors pretty much did as they pleased. Left to their own devices doctors preferred we were all none the wiser. I grew up in those long, dark years of silence, lies and evasion.
2006 gave the world a new modern age, a Consensus Statement, no less. Ieuan Hughes proclaimed it the “Gold Standard”, if you can believe that. I do not believe it. It is not true.
I’ve never believed that doctors would ever change their minds and practices simply because the recipients complained of the barbarities exacted on them in the name of ‘care’. It runs counter to everything that has maintained overarching clinical authority. It displays a reasoning that wholly misunderstands the struggle over who defines the biopolitical boundaries being played out on the undefended bodies of intersex infants.
The 2006 document is a rhetorical flourish that promises much, but in fact reifies the same prejudices and practices of old. It is not a gold standard of anything. It’s a sleight of hand perpetrated by specialists in the art of misdirection, lies and duplicity.
What began as a hypothesis during the paranoid McCarthyism of the US in the 1950s became a monstrous leviathan that now routinely processes children like material in a meat factory. Its given name was the Optimal Gender of Rearing policy.
I was raised according to its precepts, as was everyone else prior to 2006. This policy decreed that just as long as doctors got to infants young enough – the first 2 years being the magic window of opportunity – then a child could be raised as either a girl or a boy whatever their underlying physiology.
Because they wouldn’t remember.
The assumption integral to the theory was that surgeons, etc simply ‘finished’ what nature had supposedly left undone. A practice that some specialists still warm to today. The unspoken truth is that doctors decision-making on the necessity of genital surgeries is often entirely subjective, and once initiated some children can look forward to years marked by hospital visits, outpatient and inpatient, for any number of multiple procedures including surgeries, over many years.
Great Ormond Street Hospital (GOSH) surgically excised my phallo-clit* when I was 4 years old. Why they waited until I was 4 is anyone’s guess. GOSH refuses to say, along with anyone else I ask.
I’ve seen things you wouldn’t believe … Punks at the corner of Dovehouse Street, Chelsea asking after my health; Sir Michael Hordern in the foyer of a Fulham Road cinema on a rare afternoon out of hospital; tottering along Kings Road to take afternoon tea and cake: the Nicholas Hawksmoor church I could see from the narrow top floor balcony that also served as the gateway to a fire escape gantry … – after Philip K. Dick
Health professionals continue to hold to its precepts , and continue using intersex children as whole life experiments in their efforts to ‘prove’ its veracity. The catastrophic consequences that befell David Reimer may have officially led to its disavowal, however the rhetorical flourishes of current DSD guidelines cannot disguise the fact that it remains observable in presentations to this day.
Today’s intersex clinicians would clearly far prefer to start over and consign both that brutal era and all the intersex people who inhabited it to one of quaint historical artifact, and evince a palpable air of irritation toward any intersex adults who dare to openly question what clinicians continue to practice on intersex children today.
“I told them they were wasting their time. I tried to tell them, I tried so very hard to make them understand. They didn’t listen then, they’re not listening still”
Clinicians today still decide the ‘best sex’ of rearing for intersex children, even if it is presented in technical terms clearly intended to bewilder the parents. Sometimes potential – if not realisable – fertility is a factor, sometimes it’s the supposed ease of surgical techniques obtainable. Johns Hopkins’ physician John Gearhart’s statement that it’s “easier to dig a hole than make a pole” still has plenty of traction in intersex surgery circles.
Pre-emptive decision-making continues to lead doctors into making irreversible mistakes. The protocols are all, and intersex children are coercively forced to abide by them, despite their being presented only as ‘guidelines’.
Surgery isn’t the answer to the social and cultural values that continue to dictate the terms of embodiment that intersex men and women are required to adhere. It’s a deliberately violent form of erasure. It is devastating. It leaves scars in places where scars have no place to be. The consequences – sequelae in medico-speak – are the evidence around which lies are routinely constructed – reams of learned papers of variable quality continue to be written about the different surgical techniques available, none of them record how the recipient experiences those deeply invasive procedures.
Surgeries are designed to refashion the physical embodiment of an intersex person’s being.
Without their permission.
And so it came to pass that a little after my 17th birthday I went into hospital for what I was told was a ‘minor correctional procedure’.
I had no words, no language to counter their banal sounding assertions. I had no defence against what was to come. All of which, of course, was quite deliberate.
Let the record show what was done: strips of tissue were taken from my groin and then stitched together around a dildo-shaped former to create a neo-vagina. This was then inserted into my abdomen and sutured to the malformed cervix at one end and the surgically created introitus at the other. However, in their rush to secure an outcome they had failed to properly sterilise the tissue before insertion.
It also very soon became obvious that they had irretrievably damaged my urinary functionality too. Being born with a single uro-genitary sinus had added complications to the planned procedures.
It was a complication that very nearly cost me my life.
Who was this maestro of hubristic surgical expertise? – none other that Prof Sir John Dewhurst.
I learned many, many years later that Dewhurst had alighted on me because I was “an interesting case”: one aspect of which was his curiosity about whether I had functioning albeit undescended testes: if I ever did they were removed without comment.
Dewhurst knew exactly who I was, and where to find me. That was why he turned up.
Let the record show just exactly what manner of clinician’s grasp I had fallen into:
‘it is true that the child can become totally oriented to one sex and the manifestations of the other can be surgically removed and any further ones prevented. In this sense the child is not some in-between sex which the parents visualise will never properly be one or the other’.
I lasted all of 9 days after returning home before being taken in on a blue light/emergency, so my memories of that time are almost non-existent, the details gleaned from fragments of records held by my GP (family doctor). The local hospital I was admitted to quickly discovered the source of the trouble – a suppurating ulcer along one of the stitch lines of the inserted tissue; took me down to theatre, let out the infected sutures, cleaned up the mess and put me on ferociously strong antibiotics.
They also gave me a blood transfusion. There was a lumbar puncture too. That’s five days of which I can barely account for five minutes.
I was then returned to London to sort out the catastrophic mess I’d been left in. I spent the entirety of that summer long ago in and out of various hospitals, as they struggled to clear up the mess inflicted on me and keep me alive.
For those apologists who say surgeries are so much better today, explain to me this: where’s your evidence? There is none that clinicians can point to, there are no longitudinal studies to provide the data, it being impossible to question people who have never had their clinical history disclosed to them. People like myself.
Dewhurst bestrode the era and profoundly influenced the thinking of the day. I hated and feared him by turns. The belief set that he instilled still persists to this day within the realms of intersex medicine. My last encounter with him was during an out patient appointment approximately three months later, during which he floated the possibility that I might “require some further correctional surgery … we’ll see how you get on. Go out and lead a normal life”.
I never went back. Another “lost to follow up”.
It took me many years to fully understand what those doctors who were so eager to get their hands on me actually did, and what they were discussing away from my attention.
In those desolate years after that disastrous summer I learned to speak and read “medico”, as I searched for explanations, for the records that acknowledged my reality. Much of my pediatric history still remains withheld, too much still unknown. If records are denied, who is to say anything ever took place at all?
It’s clear that’s what is intended.
I have read the all too brief discussion in my London notes in which my life expectancy was discussed (after the sepsis crisis had been averted) – a question is raised about whether I would survive another major abdominal surgery after so short a recovery period. Opinion was divided. They went ahead anyway.
The neo-vagina still inhabits my abdomen. It has never been of any use because the surgically created introitus closed up within weeks of surgery. A phenomena called stenosis. It is its own indictment of the cruelties I suffered. I am not female, and never identified so; it was a hideous mutilation that served no purpose. If I was asked, I would have it all removed. I am never asked. Externally, I have burns degree scarring.
For all their efforts, the doctors could have simply asked me who I understood myself to be. But they didn’t. They weren’t interested. They had a plan. Quite simply, it didn’t include anything I had to say.
Many clinicians continue to be extraordinarily well remunerated in private practice during this present era of intersex clinical management. Some are millionaires. Many of us who endured their attentions never made it to university, our education foreshortened and disrupted by hospitalisation and trauma.
Doctors still hold to the belief that pre-emptive surgery on intersex children is a therapeutic benefit. I have yet to hear an explanation as to how it could ever be a therapeutic benefit for anyone to be forced to endure multiple genital surgeries without their permission.
I wait for an answer, not always patiently. None is ever forthcoming.
There are many too many personal stories of doctors still playing the patrician role: still with-holding information, still lying about surgical efficacy, and still mis-assigning intersex children, of parental regret in the aftermath of multiple surgeries that fail to deliver the promised benefits. Surgeons routinely proclaim their efforts an improvement over previous years efforts. No evidence is ever provided.
Scars tells their own stories, both the ones you can see, and those you cannot. The breakdown of trust is total, the consequences immeasurable.
It remains a truism that intersex children, and the adults they become, continue to be coercively forced by parental fears and the hegemonic grip medicine has on societal beliefs about sex and gender, to fit the wholly artificial matrix of embodiment medicine describes.
It is the society that parents inhabit that continues to look away and deny the barbarities enacted on neonates, infants and adolescents, that continually refuses to address the human rights abuses perpetrated in the name of some as yet un-named so-called greater good. It is intersex infants – neonates – who are depicted as being at fault for not fitting the framework that everyone thinks is unchanging, immutable. Except that most intersex adults are heterosexual, some are married, others have adopted children to raise a family.
Rarely is any attention given to addressing how to educate society to the reality that human diversity is far wider than acknowledged, and still less time given over to addressing how to stop the continuing cruelties. There is never any question given to the apparently fragile nature of the binary description of humanity that it requires pre-emptive surgeries on infants to protect its over-arching status. And therein lies the rub.
Intersex embodiment confounds the immutability of the dichotomous description of humankind. If men and women can actually embody variations that disrupt the perceived wisdom of who is and isn’t a man or woman, yet still live unrecognised in society as visibly different to the non-intersexed, then it immediately questions a lot of currently sacrosanct beliefs about what exactly being male or female means.
It is that perceptible challenge to deeply held preconceptions of what defines a man or a woman that people are afraid of, and continues to provide the motivation for intersex clinical interventions.
Morgan Holmes has critically observed:
that specialists who treat intersex take for granted that left unaltered, intersex will be socially disabling, and that acquiring enough legitimacy to foment actual change, whether of terminology or standard practice, has remained a problem bound in and by power relations that privilege medical experts over ‘patients’.[1,2]
Doctors remain gatekeepers parsing the message, and carefully monitor who conveys it to parents. Far too many doctors have little or no idea how to talk to an intersex adult.
Whilst Westernised societal values glacially, and imperceptibly acknowledge gender identity and its expression as a spectrum, it has yet to engage with the possibility that biological sex and its embodiment is also a spectrum.
Far from stemming the tide of pre-emptive surgeries, the adoption in 2006 of DSD – Disorders of Sex Development – has firmly embedded the notion that natural variations of embodiment are disorders requiring medical interventions, reflecting inculcated beliefs that children must exhibit the discrete differences accorded to male and female embodiment.
The enactment of these medically un-necessary procedures are the fulfillment of a set of circular beliefs that are recited as a matter of course; it being considered axiomatic that anyone who has a disorder must by their very nature require repair, so are then routinely subjected to invasive and irreversible surgeries. That previously healthy tissue is subverted, sutured and remade to resemble what is then declared normal overlooks the fundamental reality that taking a scalpel to healthy tissue simply because of its appearance is a profound act of clinically violence.
Intersex people bear the burden of expectation about their ‘performativity’ in whichever designated sex of rearing they are assigned. Heteronormativity is the default expectation of all intersex adolescents as they broach adulthood. The subtext of homophobia that drives clinical practice only rarely makes its presence overtly obvious. The Cools response to the Council of Europe Intersex Human Rights paper published in European Association of Urology is one of the more recently egregious examples.
It’s the vehemence of its homophobia that first catches the eye, and ironically goes a long way to confirm the subtext of homophobia that informs intersex clinical practice. The paper is also notable for pleading with the Council of Europe to make greater efforts to liaise with clinical centres of excellence and ‘established patient representative networks’. No doubt all the better that the correct message is conveyed to a wider public.
Nothing irks clinicians and their apologists more than a deliberate refusal to pay homage to the gatekeepers, and their received wisdoms. The Cools paper simultaneously ‘notes serious concerns about past medical practice, some of which unfortunately persist’, and continues, ‘health care experts and advocates share frustration at the slow implementation of principles agreed on in the 2006 consensus statement’.
Intersex activists have been critiquing intersex clinical practice since the early 1990’s. The Cools paper’s admission that past medical practices ‘continue to persist’ is a rare public acknowledgement that little or nothing has changed in the decade since the Consensus Statement was adopted.
Parents remain deeply complicit in accommodating the homophobic and sexist status quo that the current DSD standards uphold (Holmes 2011). The speed with which DSD was adopted points to a desire for validating the unconscionably in clinical practice; for a need to legitimise intersex variation as a subset of human development that can only ever be permitted to exist in society after doctors have erased all evidence of their embodied difference.
Awaiting acceptance from institutions and a society that sets its face against acknowledging the validity of human variation, when so many are still clearly invested in upholding present-day boundaries, is akin to waiting for permission to exist. That time will never arrive if clinicians have any say in the matter. To be intersex is to be uniquely vulnerable to a lack of legislative anti-discrimination protection.
There are no laws that recognise intersex legitimacy in society: we simultaneously exist in the clinical realm, yet are denied validity in wider society. It is humankind’s very own version of Schrodingers Cat, with all the dark implications that offers.
The slew of human rights abuses described in Geneva at UN CRC hearings speak of repeated humiliations, mutilations and degradations inflicted on intersex people. Laws must be changed to protect intersex children from pre-emptive procedures, as has now happened in Malta.
Without legal protection intersex children will continue to be forcibly assigned a sex of rearing, and be forced to comply with societal demands that they conform to unrealistic, and inhumane expectations of that amorphously abstract idea, ‘normality’.
Current anti-FGM legislation in the UK & US protects non-intersex infants and young children, but does nothing to protect intersex children, despite the surgeries evidencing very similar outcomes. And all the while the media narrative continues to portray intersex as defective victims of circumstance, and unquestioningly broadcasts unsubstantiated clinical claims of ever fewer genital surgeries on infants.
Present-day medical technology permits doctors to reach even into the uterus to alter a perceived intersex foetus’ development. Genetic screening can ensure the possibility of an intersex child never being born at all. That’s your ‘Gold Standard’ for you: medicine employing ever more technical means by which to erase a legitimate part of the richness of human diversity.
It will only ever be intersex-led initiatives that eventually see the rights of intersex people everywhere recognised and protected.
Bodily autonomy, stigmatisation and medicalisation are human rights issues. Intersex-led advocacy and peer support groups must be at the heart of efforts to manage and resolve them. (Carpenter, 2016)
– by Leslie J, 2016.
“I want a language that speaks the truth”: quotation by Studs Terkel, Chicago street journalist.
Joan Hampson: was one of the Johns Hopkins Team, along with John Hampson and John Money, who developed the Optimal Gender of Rearing hypothesis.
Stenosis: a constriction or narrowing of a passage, duct or opening in the body.
Introitus: an opening, a hole.
Phallo-clit: a term coined by Morgan Holmes as a means of illustrating the analogous nature of healthy tissue that only alters in its meaning and role at the precise moment a child is declared male or female. In the dichotomous thinking that saturates clinical thinking a clitoris is never permitted to rival a male phallus in its erectile capacity, and therefore must be, above all, discreet. Hence the clitorectomies performed on intersex children assigned female that in any other context would be illegal under current UK, and US, anti-FGM legislation.
 Holmes, M. Intersex: A Perilous Difference, Pennsylvania: Susquehanna University Press. 2008.
 Holmes M. Rethinking the Meaning and Management of Intersexuality. Sexualities. 2002;5(2):159–80.
 Cools M, Simmonds M, Elford S, Gorter J, Ahmed SF, D’Alberton F, et al. Response to the Council of Europe Human Rights Commissioner’s Issue Paper on Human Rights and Intersex People. European Urology, September 2016;70(3):407-409.
 Carpenter M. The human rights of intersex people: addressing harmful practices and rhetoric of change. Reproductive Health Matters. May 2016;24(47):74–84.