“Lies, damn lies and statistics”
~ attrib. Benjamin Disraeli

“My point, however, is that intersexuals are not as rare as people may think”
~ Anne Fausto-Sterling

Who is privileged enough to hold forth on who is, and is not, intersex, and what even intersex means, if it is understood at all, was long ago handed over to medical science by parents and wider society in lieu of addressing troubling challenges to preciously held beliefs about the binary and complementary embodiment of male and female. In the wake of that fateful moment in time, intersex became a medical ‘condition’, and the recipients of that medical attention were pathologised for their very being.

What it was that came first, intersex embodiment or the intersexualisation of bodies by medicine, is bound up with the formalisation of medicine itself, and the incorporation of discreet, complementary bodies into our expectation of men and women.

Just how many people may be intersex exercises some to the point of distraction, activists and academics alike. It’s not, as first appears, simply a numbers game for the cognoscenti of exotica: it has real-life consequences for anyone identified and diagnosed as intersex.

Allied to that, the question of whose truths prevail when intersex is discussed lie at the heart of how intersex knowledge is produced, and shared. The official narrative currently privileges the medical discourse, which by turn continues to legitimise coercively, pre-emptive medical protocols in place of any educative facility that may challenge that position.

There is no one intersex experience, even though there are upward of 40 recognised diagnoses of intersex variation, and many intersex people do not have a specific explanation of their variation despite sharing common experiences of coercion, non-disclosure, denial of autonomy and enforced medicalisation to some degree. Whatever else some might like to ascribe to intersex people’s lived experience, intersex men and women are not all the same.

Intersex people are set apart from their endosex friends by the enforcement of medical procedures to determine a definition of their being, often in conflict of what that person knows or wants for themselves.

The original ‘Baltimore Protocols’ were reliant on a belief that unruly intersex bodies were and are unusual; that they are rare. Leave aside for a moment the fact that many intersex people have quite unremarkable embodiment, the expectation promoted, then as now, continues to be one of rarity.

Embedded into the current discourse of intersex incidence is a percentage of 1.7%. This figure was tentatively suggested in a paper by Blackless et al published in 2000. The figure is shared around today with a certainty that isn’t entirely warranted, and doesn’t bear close scrutiny when the question of who is, and is not, included in the definition of intersex. Especially when that paper routinely scatters around terms such as pseudo and true hermaphrodite throughout the text.

Since the Blackless paper was published, clinicians have adopted a Consensus Statement concerning medical practices directed at intersex diagnoses. Coincidentally, 2005 was the year that John Money died, and during which the Consensus Statement was unveiled to the world. Given the overwhelming influence that Money exerted, and some might argue still exerts, over the interpretation and execution of those protocols; essentially the ‘practical’ enactment of his ideas over many decades, it is arguable that any purported revision had to await his death.

Prior to the adoption of the Consensus document, intersex activism had laid claim to ‘ownership’ of the word intersex as a means of acknowledging their identity as pathologised beings. In doing so the word passed from established medical authority to it’s subjects, and so a hard scrabble for a new set of nomenclature that medics and parents alike would feel comfortable with led to the adoption of term Disorders of $ex Development ~ an umbrella term with no medical application at all. In doing so clinicians determined that the previously employed terminology of hermaphrodite (pseudo or ‘true’) and intersex, terms that were scattered throughout the Blackless paper, would now be consigned to the waste bin of history.

The statement’s adoption has led to multiple, deleterious consequences for intersex people, in part by alluding to intersex as a ‘choice’ , and D$D as a circumstance that ‘requires’ medical intervention, rather than recognising intersex embodiment as a state of being pathologised by medics.

Without the concomitant pressure to accentuate the human rights abuses that lie at the heart of intersex medical practices, and the later co-operation in the adoption of the Chicago Consensus Statement, earlier efforts to promote intersex as one of legitimate embodiment were partially nullified, and any potential progress that had previously been invested in outlining abusive medical practices were compromised as medicine again reinforced it’s primary position as the sole conveyor of knowledge.

It is possible to see that positioning intersex as one of identity politics as a mechanism for raising intersex visibility inadvertently gave clinicians a mechanism they have been only too happy to embrace for their own interests. Declaring yourself intersex may be an act recognising a personal experience of enforced medicalisation in childhood, but clinicians choose to interpret it as one of adult ‘choice’.

Parents have recoiled from the word intersex, mostly because it includes the word ‘sex’, and they don’t wish to associate their infants with future, adult-related themes. The irony inherent in parents accepting D$D more easily because it infers medical authority through diagnosis fails to address that the interventions are directed precisely at the future adult’s embodiment, with all that may involve. Framing the processes as ‘in the best interests of the child’ serves to disguise the reality of the intent directed at those children.

There is certainly no imperative to “out” oneself as intersex. The reality that many intersex people fear ostracism and overt prejudice focussed toward them should they be open about their status goes a long way to explaining why so many choose not.

Yet that person will still be intersex, whether or not anyone else knows it. Instead a person’s declaration of being intersex should be understood in the context of a personal acknowledgement of that person’s state of being, with all the concomitant experiences of medical coercion that such a personal experience encompasses.

Contrary to the rose-tinted beliefs held by some, there is no cachet in declaring yourself intersex: medics recoil, parents are aghast, and the prurient think it is an invitation to ask questions that have no place in day-to-day conversation.

An openly intersex person often finds themself in a situation that has the disturbingly self-fulfilling effect of placing the burden of expectation onto their shoulders to be “the” representative of all intersex people, as if intersex is all one and the same.

As is customary in these modern times the recipient is now assumed non-binary, in absence of any personal information provided to the contrary, and expected to do all the heavy lifting as the ‘knowledge-bearer’ about intersex issues, fielding any and all questions however crudely framed.

The ‘audience’, such as it may be, is often curiously passive in any expectation of their own efforts to disabuse themselves of any or all misunderstandings they may well have about intersex existence, and its lived experience. Comforting lies being easier to digest than discomforting truths that may implicate their own misunderstandings.

This happens irrespective of any trauma issues that an intersex individual may harbour, and however much being asked to ‘talk about it’ may re-traumatise that individual.

What is commonplace is clearly a situation that relies on who is attributed authority in knowledge production about intersex. Medicine has taken that authority for itself to the exclusion of all else: society, being parents and others, having resiled any responsibility for addressing the comprehension or explanation of what may be expected of male and female embodiment to one of deeply hetero-normative, and misogynist orthodoxy.

The unexplored question that embodiment does very little to indicate someone’s future gender expression or orientation is deliberately ignored in favour of producing children who meet rigid expectations of how they should be embodied and behave. It’s a set of procedures that have evolved with the explicit focus of placating parents, and in the performance of those actions reinforces medicine’s authority to provide absolutist answers, denying the possibility of addressing a spectrum of human development that give alternatives to the medical narrative.

What is being described is not intersex as rarity, but the ignorance of a wider public to the existence of intersex people in their midst. It is a situation that medicine has sought to engineer for itself by providing a solely medical explanation of intersex variations.

With holding information and misdirection became the watch words of a process that sought to deny any understanding to parents and affected individuals alike, centring everything through a clinical lens.

The net effect of which has been to embed medicalised processes into parental expectations of how to ‘treat’ such an unexpected introduction into their lives.

It legitimised applying medical procedures to non-medical circumstances and embedded the expectation that medicine could ‘cure’ any social discomfiture at the discovery that human beings were not always explicable in straightforward ways.

Medicine can, and does, make it ‘go away.’

Intersex people exist, and live in plain sight. But it is unusual for people to be at all aware of intersex existence in their midst. Instead they are denied their personhood, segregated and set apart as ‘medical diagnosis’. That is not rarity, that is ignorance of a group of people so marginalised as to be effectively invisible.

Doctors maintain the deceit that intersex is rare because to admit otherwise would call into question everything they supposedly uphold by maintaining the medicalisation of intersex bodies.

Should it have ever come to pass that intersex embodiment is common ~ in whatever combination that might be, genetic, embodiment or physiology ~ then the standard against which intersex has been measured by would have to be reconsidered. More pointedly, the ‘justifications’ for pre-emptive ‘elective, cosmetic genital, surgical procedures’ would immediately, and completely, disappear.

Condition is a word that can mean to train, to groom. It might be said that is exactly what a multiplicity of doctors do when faced with uncomprehending parents and an unruly child who is not immediately able to offer an explanation of how they may understand themselves. This is what doctors do when ‘offering’ to ‘explain’ intersex to a non-specialist audience.

Ellen Feder felt comfortable enough championing the adoption of D$D nomenclature that she wrote of it ‘changing the conceptualisation of intersex’ from “disorders like no other” to “disorders like many others.” She is certainly not alone in that expectation, but has been notably in promoting that expectation. In doing so she carelessly does intersex people everywhere a service by making plain the motivations of medical discourse directed toward intersex, even if that may not have been her intention.

Instead its adoption has achieved the exact opposite to the one promised by its advocates, reifying medical authority and embedding pre-emptive medicalised interventions as an “answer” to questions that intersex embodied people present to the endosexed.

Language matters in these circumstances, and people are marked by it’s use. Silencing intersex voices and presenting a medicalised version of ‘truth’ continues to permit the stigmatisation of intersex as one of impairment.

Implicit in the adoption of D$D terminology is a belief that medicine can produce their child as an heteronormatively embodied adult, thereby dispelling any potential disruption of the normative expectations of their child, and the adult they become.

Given that, it becomes very challenging to explain the justifications for the panoply of extensive and intrusive procedures should the recipient go on to declare themselves gay or queer, or contradict the intended gender their assignment was supposed to secure, along with the assumed heteronormative expression of their being.

It was perhaps inadvertent on the statement authors’ part (to the Consensus Statement) that in acknowledging intersex as a term long-used in medicine they freely admit that a deliberately marginalised group of people have historically been given over to medicine on society’s behalf, the better that parents, teachers, and everyone outside the medical purview aren’t burdened with the responsibility of facing their own irrational and less than well informed opinions about what is human. An assumption that relies on clinicians being wholly unbiased and not subject to the same cultural influences as everyone else: which, of course, they are.

That clinicians have now stalled on using Disorders, instead preferring Differences actually undermines the previously held declaration that D$D is much like any other medicalised situation, ‘the gold standard’ even, when practice shows it is precisely because intersex is thought of as fundamentally different to a supposed norm that it warrants non-consensual, medicalised intervention in the first place.

Disorders of $ex Development morphed into Differences as the growing realisation of the negative impact of Disorders filtered back to clinicians from parents and affected intersex people alike. Adopting differences changes nothing, merely ameliorating the discomfort of those who now realise the implications of describing anyone as ‘disordered.’

Intersex men and women are pathologised for life by procedures that clinicians and their apologists are invested in telling us are much like any other, when the overarching point of the exercise remains ridding the intersex embodied of any objected-to evidence of variation.

Marked by a nomenclature that dehumanises, intersex men and women are reproduced as a societally affirmed different in consequence of medical intervention, and in the doing are stigmatized all over again, this time by their medicalised differentiation.

Personhood and agency is subverted to one of process.

The many decades of medical intervention have not produced the longitudinal evidence to support the procedures employed by medicine. It’s reliance on current practices whilst simultaneously failing to produce long-term evidence to justify those practices is bound up with political interests that privilege paediatricians: a profession that has little or no interest in adults or the challenges medics’ interventions load onto those adults as a consequence of their childhood experiences.

Never mind how the affected individual may experience these interventions, still less any effort is given over to actually asking if that is what the recipient may wish for themselves. All of that is secondary to the task of ‘producing’ an adult who can be assimilated into binary, heteronormative societal expectations.

The repeated claims of rarity continue to legitimise these procedures, whilst evidence for the claims remain curiously unrecorded. This phenomena is reversed once the child attains adulthood. That same rarity operates in the exact opposite manner: clinicians now declaring the same rarity that required intervention in the ‘child’s best interests’ now make it impossible to address the legitimate concerns of the intersex adults medicine has produced, because now there are so few to justify any response.

Medical-scientific discourse routinely uses abstract notions and theories to produce knowledge, and prestige. Never more so than when talking about intersex. It is that prestige which overrides the testimonies of intersex people in describing their experiences of what intersex actually means as a living being, rather than an abstracted hypothesis.

All intersex medicine is experimental. It always has been. Relying on a set of numbers and percentages that cannot in all conscience be substantiated, strips a marginalised group of people of their personhood, and denies their humanity, instead defining them by nomenclature and medicalised process.

In the wake of determined criticism, medics have taken to saying that ‘it is all much better these days.’ A lot is implied by the words “much better” ; implicit in this is that ‘if the recipient of these practices had only chosen to have been born 20 years later than whenever they actually came into the world’ doesn’t get the warm welcome medics seem to think it warrants.

This author was once told, in a consulting room, that they were “as rare as hens teeth.” It wasn’t clear then, and isn’t today, what exactly I was supposed to do with that information, except ask “and …?”

My supposed rarity, a circumstance I had no possible means of interrogating at the time, was part and parcel of the ‘why’ I was coercively inducted into the world of intersex medicine. In doing so process was validated as a means of making me comprehensible, denying any possibility to any decision I might have made for myself.

Intersex is, as it has always been, about people and their lived experiences, not numbers, percentages or nomenclature. Something medicine has been loathe to acknowledge or admit.

In the circumstances it’s hardly surprising that an intersex person may be wary of saying anything that openly declares their status. Because those same intersex people may not be entirely sure about you, but are all too well aware of what is said about intersex or at least those ‘exoticised’ and ‘othered’ beings discussed as intersex, and so find it often far safer to say nothing at all.

An intersex person entrusting you with their ‘story’ is a gift not to be taken lightly; we make ourselves vulnerable in ways it is hard to comprehend for those who are not intersex. It’s a challenge that declares, here I am, now what is it do you think you understand about me.

The more recent adoption of a human rights narrative to describe intersex experiences has put the medicalised discourse under the spotlight in ways that the medical narrative has deep difficulty in addressing.

The reasons for that are multiple and complex, but buried in that lies an observable ambivalence that informed the co-operation in producing the Chicago Consensus Statement in the first place. Some saw it’s alteration and amendment of language and derivation as an answer to the abuses intersex children and young adults endure. The document took up the medical model that described intersex embodiment rather than look to embracing human rights protections that enshrine personal agency and autonomy. And the medics who came together to write adopt Chicago Consensus statement willingly took advantage of that ambivalence with enthusiasm.

Human rights apply to everyone, irrespective of the numbers involved: everyone counts.  Increasingly it is recognised that intersex medical protocols’ talk of ‘rarity’ has no legitimacy when the realities of lifelong pain, sterilisation and surgically invasive procedures are adopted, without any medical utility, to assuage social discomfort.

Parental ‘rights’ over decisions that have lifelong consequences raise legitimate questions about whether those imputed ‘right’s’ extend to such irreversible decisions over a child and the adult they become. A hegemonic grip over influencing parental understandings of what their intersex child actually is, or will be once the medics have fulfilled their side of the bargain, is now under constant pressure to provide empirical evidence.

Simply saying it is so no longer carries the day in ways that clinicians once took for granted.

In an era that readily embraces plastic surgery as a matter of course in pursuit of an unobtainable, yet projected ‘perfect body’, the rights of intersex people to engage in not having their bodies irreversibly altered before they can ever have any say is a legacy of patrician-like condescension, and prejudice, that has no place in today’s world.

Yet that same hangover of idealised expectations of embodiment and sexualities still exerts an overwhelming leverage in consigning intersex outside the generality of discussion. Simply being marked as intersex apparently renders any rights to legal recognition and protection null and void. Laws for all, except if you happen to be intersex: the UK anti-FGM legislation that seeks to protect infants and young children from genital mutilation has no leverage here. All who are intersex are set apart by their very difference. The law is ignored by clinicians and parents alike who adhere to a cultural expectation of gender and it’s embodiment, and the intersex child is coercively inducted into processes to meet that expectation.

It remains to be seen how long it takes for intersex people to gain the recognition and acknowledgement of their human rights. It is possible to envisage a multiplicity of mechanisms being engaged, and the over-arching belief that intersex equals medicine being overturned in favour of a more social understanding of the spectrum of human embodiment.

It’s not impossible to envisage a future in which the plurality and indeterminacy of representation and form that intersex means are incorporated into new ways of deciphering that corporality as legitimately human; one that privileges an individual describing their being, not being defined by the absent and patrician-like authority of medicalisation.

Prior to that day there is need to engage legal protections from pre-emptive surgical and medical interventions until the day arrives when being intersex is no more remarkable than the colour of a person’s eyes.

It ought to be the primary consideration of legislation to protect all who are vulnerable to pre-emptive, medicalised interventions of their being that are driven by social and cultural motivations, but we live in a world turned upside down where any question of intersex embodiment renders these discussions void.

The multiplicity of voices in intersex advocacy mirrors the multi-headed octopus that is medicine’s influence across the social and cultural landscape. Those intersex voices have made enormous gains from a standing start of being utterly denied anything about themselves to engaging directly with academics and medics alike. Their voices bring challenge, and change in their wake.

We also bring our humanity as embodied intersex people into vision as living beings, our person-hood replacing the abstract and exoticised preconceptions of an half remembered mythology. Intersex people are not theoretical constructs of a technical language, we are people. Our authenticity is produced by the very experiences we describe. The language employed by medicine dehumanises intersex embodiment as an ‘abject subject’ in a discourse that seeks to silence our lived experience. It has no place in defining who we are as people. It is anathema to acceptance and understanding.

It is not the abstract language of medicine or the silencing it seeks that will prevail, but the shared humanity of intersex people who will, ultimately, do more to change attitudes and understandings toward intersex agency and their chosen futures than anything else.

References

Blackless et al: How sexually Dimorphic are We? (2000)

Feder Ellen: Normalising Medicine: Imperatives of Normality: From Intersex to Disorders of Sex Development (2009)

Fine Cordelia: Testosterone Rex ~ Unmaking the Myths of our Gendered Brains (2017)

Jordan -Young Rebecca: Brainstorm: The Flaws in the Science of Sex Differences (2011)

Holmes Morgan: The Intersex Enchiridion: Naming and Knowledge (2008)

Kessler Suzanne J: The Medical Construction of Gender: Case Management of Intersexed Infants (1990)

Lee et al: Global Disorders of Sex Development Update since 2006: Perceptions, Approach and Care (2016)

PW Speiser et al: Congenital Adrenal Hyperplasia Due to Steroid 21-Hydroxylase Deficiency: An Endocrine Society Clinical Practice Guideline (2018)

J Struli et al: Shaping Parents: Impact of Contrasting Professional Counselling
on Parents’ Decision Making for Children with Disorders of Sex Development (2013)