Blog post

Depathologising, Repathologising: the WHO’s New Guidelines for Trans and Intersex Healthcare

Jules Gleeson explains the history of pathologisation of intersex people with the term 'Disorders of Sex Development'.

Verso Books26 November 2018

From the Intersex Society of North America

Both transgender people and those born with intersex variations have both suffered many abuses from the medical establishment. Campaigning from both groups has often aimed to reform existing standards and approaches to treatment. Transgender activists had good reason to celebrate this June, as new clinician’s guidelines from the World Health Organisation (WHO) removed ‘transsexuality’ from being considered a pathological condition. This breakthrough has been cast as equivalent to the breakthrough in homosexuality being depathologised in 1973, after campaigning by gay liberation groups.

By contrast, the same document was greeted with dismay by intersex activists, as it included a term rejected by most of us: ‘Disorders of Sex Development’. The intersex movement have for years struggled to have our bodies understood in terms of variation, as opposed to a pathologising lens framing us as afflicted by ‘disorders’, or ‘conditions’. Disregarding this work, the WHO disregarded in-put from intersex people, and decisively sided with those who wish to frame our bodies as innately pathological. Introducing intersex issues through the framework of ‘Disorders’ rather than variations, serves as a continued justification for the routine mistreatment of intersex people by the medical establishment.

The Organisation of Intersex International Europe quickly published a response entitled: WHO publishes ICD-11 – and no end in sight for pathologisation of intersex people. OII rebuked the new WHO document in unsparing terms: “despite intersex experts working with WHO in the process, people with variations of sex characteristics are being pathologized and called disordered... we are very concerned that WHO has let the chance pass to depathologise intersex people and hence to work towards decreasing human rights violations intersex people face in medical settings.”

Appreciating why the appearance of this term was greeted with such a negative response by intersex activists requires understanding the prevalent pathologisation of those born intersex, by both society at large, and the medical establishment in particular. This is not simply a matter of avoiding offence to intersex people, but rather a matter of avoiding potential justifications for on-going human rights abuses, which have established themselves as a matter of routine in the medical establishment.

The WHO’s formal deployment of this term was especially bitter for coming toward the end of a decade which had seem many breakthroughs by what has been termed the intersex movement. In this piece I will examine the history of the term ‘Disorders of Sex Development’ (DSD), and introduce to a general audience why it has been met with such fierce resistance on the part of intersex people.

Alice Dreger’s Bad Idea: Declaring Intersex People ‘Disordered’

The term ‘Disorders of Sex Development’ originates in 2006. At the International Consensus Conference on Intersex, held in Chicago by the Lawson Wilkins Pediatric Endocrine Society and the European Society for Paediatric Endocrinology, the term was decided upon as one aspect of the gathering’s efforts to reform the treatment of intersex patients. By this point, years of campaigning by intersex groups had already left this form of medical treatment controversial, and the Conference sought to offer a clear framework, and new terminology, for use by physicians.

Although this meeting did include two intersex activists, among the community as a whole the term ‘disorders’ was rejected as at odds with the core aim of most intersex political activity: that is, the de-pathologisation of intersex bodies, and resisting framings that would enable further harm from the medical establishment. The position of the intersex movement did not receive a clear hearing at this event, which instead set about revising a model that assumed intersex variations were a pathological form of embodiment, to be treated (and ideally resolved). The ‘consensus’ alluded to in the event’s title was certainly not one inclusive of intersex perspectives.

Participating in the meeting was one of the most outspoken early defenders of the term was self-described ‘sexologist’, ethicist and historian of science, Alice Dreger. Prior to her forthright endorsement of calling us disordered, Dreger had been highly regarded in intersex circles, and indeed considered a key academic ally. In the controversial aftermath of the Chicago conference, this was to change quite abruptly.

In a 2006 blogpost acknowledging the unpopularity of ‘Disorders’ language, Dreger wrote the following:

I understand completely why a lot of people feel like the term is a step backwards towards pathologizing and medicalizing sex anomalies. But here’s the thing. The term seems to be helping. Really helping to accomplish those basic goals of the intersex rights movement. When I finished the handbooks and started distributing them, as I used “DSD” instead of “intersex,” the medical professionals providing pediatric care immediately got past the usual defensiveness they had and got to talking with me about how to make things better.

A couple of people at my Kinsey talk pressed me about the terminology and asked me to work more on trying to find a new, better term. What about, for example, “variations of sex development,” as some have suggested? Honestly, I don’t see that term flying in the medical system; I’ve asked about it, and it doesn’t go anywhere. Part of the reasonable fear among medical professionals is over-de-pathologizing sex anomalies.

This blogpost marks a turning point in Dreger’s career, as she became one of the most prominent advocates of a terminological development the intersex movement rejected outright. It’s worth considering the quite manipulative framing of this short piece in some detail:

This peculiar concern with ‘over-de-pathologizing’ our bodies is most striking, and can only be read as face-saving for the medical profession. In a context where so many intersex people have come forward to describe offences against their bodies committed by those supposedly treating them,  In Dreger’s remarkably narrow conception of the ‘political’, only activists appear as politically charged actors. Intersex Genital Mutilation is presumably not a ‘political’ act, as it is garbed in formal terminology, and performed by fully qualified professionals. The medical establishment is taken as a given: language which ‘doesn’t go anywhere’ in medical circles must be discarded in favour of more amenable, less accusatory terminology, which will put them at ease. The medical profession has ‘reasonable fears’, whereas the emotional states of intersex people do not receive the same detailed consideration, nevermind justification.

Dreger’s clear concern in orienting towards physicians is a stark contrast to the approach voiced by Hida Viloria, a former head of Organisation Intersex International (OII). At the OII, Viloria justified an approach which treats intersex issues as a human rights matter, rather than approaching medical associations, in frank terms:

Actually that would be like African Americans approaching the KKK back in the 50s. The medical establishment are the ones who have stigmatised us the most, and harmed us the most.

This 2006 blogpost was not the end to Dreger’s lobbying for calling intersex people ‘disordered’. An article for the well established queer academic journal GLQ followed in 2009. In this irresponsible attempt at scholarship, Dreger uses a deconstructive framework she claims is inspired by Michel Foucault, to justify the new term ‘Disorders of Sex Development’. Faced with clear opposition from many victims of Intersex Genital Mutilation, Dreger here attempts to define away their basis for objecting by disputing intersex people existing as a unified whole, or even as a community at all. Whereas the intersex community might claim to oppose framing them as disordered, in truth this was an invalid concern, as the intersex community does not meaningfully exist at all.

It’s in these pieces that the agenda behind ‘Disorder of Sex Development’ framing becomes clear: ‘intersex’ could be understood as a meaningful identity, which exists between those processed by medicalisation (and who most likely suffered similar offences against their basic dignity). Intersex was a ‘political’ term, in that a group could rally around that identification, and pursue their interests through dedicated groups. Instead declaring intersex variations a cluster of ‘disorders’ provides a means for radical individuation, undermining the political basis for any organisation whatsoever. The language of ‘disorders’ is favourable to parents keen to see their children’s condition as a non-ontological state. A ‘disorder’ is presumably possible to surgically correct. This rhetorical sleight of hand is useful to physicians keen to ease their application of authority to secure consent for unnecessary procedures.

Not all scholars have been convinced by the ‘Disorders’ model. Philosopher and black feminist Catherine Clune-Taylor has proven especially astute in responding respectfully to intersex issues, and has consistently rejected the term outright. Clune-Taylor relates the horror with which she encountered as the language of ‘Disorders of Sex Development’ entrenched itself in the late ‘00s:

Like many, I was shocked to learn about the adoption of the Consensus Statement and the DSD nomenclature... I was appalled by the endorsement of the DSD nomenclature and treatment model by the very same intersex activists and feminist academics like Cheryl Chase and Alice Dreger whose scholarship and activism had inspired my own scholarship and academic reorientation....I couldn’t quite make sense of what had motivated this about-face. Furthermore, I was very concerned by the way in which those who were either involved in the adoption of DSD or endorsing it were engaging—or more specifically, failing to engage—with what seemed to me to be valid concerns about DSD that had been raised by critics, especially those with intersex conditions.

Clune-Taylor’s thesis on the adoption of ‘DSD’ terminology is the most comprehensive refutation of the term available. Following from her work, for the rest of this article I will take it as read that terming intersex bodies intrinsically ‘disordered’, merely for falling outside normative standards of sexuation, is an offence against our human dignity.

Appreciating the stakes in these divergent approaches to intersex activism requires grasping the sheer scale of the damage done by ‘corrective’ surgeries performed on intersex children, still a matter of routine in many hospitals. Intersex activists have adopted the term ‘Intersex Genital Mutilation’ to describe these medical practices, not least as the most common form of cutting involve extensive removal of clitoral tissue (outlawed on non-intersex people in both the US and UK under Female Genital Mutilation legislation). Other standardised procedures include ‘gonadectomies’, and either closing or deepening vaginal openings.

Intersex Genital Mutilation: A Global Medical Crisis, and Routine Human Rights Violation

Not all intersex people experience Intersex Genital Mutilation: some variations do not produce ambiguous genitals at birth, only being detected later in life (often when couples are trying to conceive). In rarer cases, parents spare infants with ambiguous genitals ‘corrective’ cosmetic procedures (often a decision that requires them to stand down several medical professionals). Although not a universal feature of intersex experiences of these variations, abolishing Intersex Genital Mutilation is a primary focus of every group which makes up the intersex movement. After years of protest and lobbying, the issue has begun to attract considerable mainstream attention, with intersex voices from those subjected to these practices finally coming to be heard.

A common reaction for those hearing about the severity of the damage done by Intersex Genital Mutilation is shock and disbelief, so a history of the practice is required here. The development of pathologisation of intersex people, and surgical interventions intended at ‘normalising’ their sexuation, is best recounted in the third chapter of Anne Fausto-Sterling Sexing the Body.

Fausto-Sterling shows that with the advance of medical technology through the 20th century, and as childbirth moved into industrialised hospitals, an increasing population of children were identified as unclear in terms of apparent gender assignment. Doctors responded by reconceptualising sexuation as a process that could occur in an uncompleted way. Physicians working with intersex patients displayed a pervasive fear of sexual ambiguity. Pediatric experts much preferred to diagnose infants as ‘pseudo-hermaphrodites’, claiming at this point that only a creature with two sets of functioning genitals qualified for true hermaphrodite status. The ‘pseudo-hermaphrodite’ was ultimately created by physicians to justify radical interventions, seeking to ‘correct’ the bodies of intersex people.

In these cases, it was reasoned, the role of physicians was to provide as close an outcome as they could to a ‘normal’ body, of one gender or the other. In most cases, infants with ambiguous genitals would be assigned as girls. The framing of bodies as having an ontologically true ‘underlying’ state was at odds with the scientific breakthroughs in understandings of early foetal development, and the endocrine system. Yet this attitude pervaded in practical terms as a means of doctors providing surgical ‘solutions’ for children who in most cases were left requiring no therapeutic intervention by their intersex status.

The term ‘intersex’ was originally deployed as a means of softening the blow of the outlandish sounding ‘pseudo-hermaphrodite’, although for a time these terms were used interchangeably. It was not until the 1990s that any serious number of people declaring themselves ‘intersex’ emerged (‘pseudo-hermaphrodite’ has largely not been reclaimed, although one early activist group dubbed themselves ‘hermaphrodites with attitude’).

As these procedures became a commonplace across the mid-20th century, parents were usually either provided with no correct information whatsoever (with surgeries simply described as ‘necessary’, perhaps to remove cancers), or else were coerced with a medley of fear-mongering, homophobia, and blunt appeals to authority. The status quo of medicalisation of intersex variations follows on directly from this heritage, even if efforts to reform have been made in certain nations (Indeed the term ‘Disorders of Sex Development’ was part of one reform effort, in the US and Europe). Complicating efforts is the hierarchical structure of training in hospitals, where the most authoritative figures present invariably come from preceding generations, conveying a best practice often at odds both with mainstream social norms, and best practice informed by up-to-date medical research.

The current medicalised condition of intersex people is dire. Frameworks for determining viable ‘males’ are based primarily with penetration in mind. Procedures are most commonly focused around excising material termed ‘redundant’ tissue, as well as producing vaginal passageways doctors deem viable (which is to say, possible for a presumed boyfriend or husband to penetrate). Operating on infants and young children will always be imprecise, as changes during puberty can be unpredictable. As doctors rarely perform in-depth follow ups of patients, even the most experienced physicians are effectively performing guesswork, with regards to long term results.

Intersex children are often left requiring multiple ‘follow up’ surgeries, which generally become increasingly imprecise as the quantity of scar tissue (relatively hard for surgeons to work with) increases. In many cases surgeries are accompanied with courses of exogenous hormones that are not explained clearly to intersex children, and teenagers. Some intersex people only become aware of the full nature of the hormonal courses they’ve been given during adulthood.

Additional to the physical damage caused by these procedures, deception is the norm in their handling by both doctors, and parents. In surgeries performed on intersex children capable of speech, euphemisms are often deployed to actively mislead them. For instance, one activist aged eleven was told that a vaginoplasty was ‘bladder surgery’. In many cases, those lied to in this was discover the truth after prolonged bouts of chronic medical problems, including loss of sexual pleasure. Previous guidelines for clinicians actively encouraged them telling patients lies, in order to cover the tracks and nature of the procedure. Between this, and there being no centralised records monitoring the number of these surgeries which occur across each nation’s hospitals, it seems unlikely that we will ever be able to establish more than vague estimates of how many intersex people were born, and mutilated, across the 20th and early 21st century.

This deceptive treatment of children and adolescents with intersex variations denies them opportunities to form communities with others similar experiences, and instead promotes feelings of acute individuation: that intersex people are ‘freaks’, or that their medical difficulties (often caused directly by mistreatment from medical professionals) are an affliction that leaves them truly alone. It’s for this reason that discovering intersex communities for the first time is a moment recalled by many intersex activists as a unique relief, and unburderning. (This process today most often happens through a Google search).

For victims of Intersex Genital Mutilation, discovering one’s own history can in itself cause a rift in one’s sense of trust with one’s family (particularly parents), and the world more generally. The tendency of the medical profession to ‘cover its tracks’ through providing false information involves guardians of children in organised and routine deceit. This mingling of damage both to intersex people’s bodies, and to their core relationships through both parental and professional betrayal, is expressed clearly in a personal account by Sophie Siedlberg:

I found myself under the surgeon’s knife so many times I may as well have lived in Hospital. Each and every single cut was designed to alleviate “My Parents’ suffering”. The reality was the doctors of the day were feeding them with some pretty unpleasant, scary stories if they (Not the doctors themselves you will notice) made any mistakes in this process of the child being controlled....I felt like a living pestilence that had to be controlled by pest control, and I was not a particularly ill behaved child. It was my anatomy that was the cause of such upset.

That these procedures of this kind remain widespread is one of the most serious and urgent scandals in medical history. It should be considered a source of shame not for intersex people suffering through medicalisation, but the medical profession which has perpetrated this harm in the interests of fabricating order, and sustaining gender normativity.

Recent Breakthroughs In Intersex Liberation

The 2010s have seen a step change in intersex activism, as a previous moderate tack was largely abandoned, and a renewed focus on pressuring global level human rights bodies (rather than medical organisations) developing on an international scale. This new approach rapidly produced a string of breakthroughs accumulating at a pace only the most optimistic could have anticipated:

- In 2013, The United Nations Special Rapporteur on Torture classified I.G.M. (defined here as cosmetic “normalizing” surgery on intersex children) as an injustice, and ruled that such surgeries “often… arguably meet the criteria for torture, and they are always prohibited by international law.”

- In 2014, the World Health Organization released a statement opposing invasive or sterilising surgeries on intersex children, advocating for “eliminating forced,coercive and otherwise involuntary sterilization.”

- In 2015 the tiny European nation of Malta passed a "Gender Identity, Gender Expression, and Sex Characteristics Act" which included outlawing Intersex Genital Mutilation, as well as instituting legal protections against sex discrimination. In the same year, the European Agency for Fundamental Rights released a paper outlining a new hardline on intersex rights, including the following conclusion: ‘Member States should avoid nonconsensual ‘sex-normalising’ medical treatments on intersex people.’

- In 2016, the American Medical Association Board of Trustees recommended that: “except when life-threatening circumstances require emergency intervention, defers medical or surgical intervention until the child is able to participate in decision making.”

- In 2017, three former US Surgeons General released a statement arguing against further ‘corrective’ surgeries on those too young to consent, arguing:  “there is insufficient evidence that growing up with atypical genitalia leads to psychosocial distress,” but that “while there is little evidence that cosmetic infant genitoplasty is necessary to reduce psychological damage, evidence does show that the surgery itself can cause severe and irreversible physical harm and emotional distress.” They continued: “These surgeries violate an individual’s right to personal autonomy over their own future.”

- October 2017, the American Academy of Pediatricians released a statement on Intersex Awareness Day, commemorating the 21st anniversary of a protest at the AAP office by admitting the unacceptable nature of the status quo: “Current surgical practices on infants and children with intersex variations lack an evidence base. Human rights violations occur routinely in US hospitals, and elsewhere in the world.”

- In November 2017, Germany’s highest courts demanded that the state introduce full recognition of a third gender from birth, ruling the existing state of affairs constitutional and ensuring that a ‘positive gender entry’ be introduced for intersex babies by 31st December 2018.

- Germany was followed this year by Austria, with a legal win in a constitutional court by an intersex activist requiring the state to offer room for ‘third gender’ identification

- Following in the footsteps of Malta, Portugal’s parliament approved a law this in April of this year, Portugal’s parliament outlawing unnecessary surgery on intersex infants.

Although intersex genital mutilation remains a constant in much of the world, with infanticide occurring as a norm in many regions where medical care has still not been fully industrialised, substantive breakthroughs in advancing intersex rights seem to being achieved year after year. Whereas in 2009, Alice Dreger was attempting to dispute the intersex community existing at all, the 2010s have seen a rapidly amassing string of successes by determined activism by intersex groups. But these advances only increase the dissonance for the existing medical establishment, who have at this point been repeatedly identified by global governance bodies as perpetrating systematic injustice against intersex infants, and children. Sadly, this has not yet been resolved by the practices being halted.

‘Disorders’ and Mutilation: Two Vying Perspectives

A clear impasse has arisen between intersex activists committed to abolition of Intersex Genital Mutilation around the world, and the reputations and careers of medical professionals now effectively charged with routinised torture.

If the intersex movement is right to argue that ‘corrective’ procedures performed on intersex individuals in no direct need of them can be classed as mutilation, and a human rights offence, it inevitably follows that many medical professional have routinely performed human rights abuses against their patients.

This is not to say that there is any clear pathway in securing justice through courts for intersex victims of Intersex Genital Mutilation: consent forms signed by parents, and the statute of limitations on civil cases, may prevent this from resulting in almost any intersex people securing formal legal remedy. Rare cases where doctors have been struck off for mistreatment of intersex patients featured sexual abuse in addition to Intersex Genital Mutilation, as I detailed in a recent piece for VICE (IGM itself is too standardised for practitioners punished.) But whatever the legal status of the procedures, the point remains that they remain under the formal purview of the the UN Special Rapporteur on Torture, among other official international bodies.

It’s alongside these breakthroughs that the language of ‘Disorders’ has come to establish itself in mainstream clinical terminology. As shown by a report by Human Rights Watch, measures recommended by the original committee compiling the term ‘Disorders of Sex Development’ have clearly failed to erode the practice of Intersex Genital Mutilation:

As documented in this report, despite evolving standards of care, the establishment of multi-disciplinary “DSD teams,” distaste for discrimination, and an increasingly visible public debate over informed consent and medical necessity, many doctors continue to misinform parents of intersex children and pressure them into choosing unnecessary cosmetic surgeries on their children. Nearly every parent interviewed for this report said they were presented with medically unnecessary surgery as an urgent need at least once during their pursuit of care for their child.

The overbearing priority for physicians in this context is to downplay, delegitimize, and brush aside complaints from the intersex movement. A weak set of excuses for the continuation of these now controversial surgeries has emerged. An article from the Guardian in 2016 reveals one prevailing attitude among physicians:

Mark Woodward, a paediatric surgeon and urologist who works alongside Nicholls, agrees. “A small group of people who have had surgery and are understandably unhappy will detract from a genuine picture of a whole load of people not being unhappy. It’s tricky to write off surgery on the basis of that.”

Surgery in infancy is more straightforward than later in life, Woodward argues: tissues are easier to operate on and heal better, and the distances to bridge are smaller. Performing an operation before a baby can remember the trauma spares them the distress of going through it as a teenager. Plus, no one has expertise in operating on young people old enough to give informed consent. “If everyone is too worried about doing the wrong thing by these children now, and we say, ‘Let’s leave it until they’re 15,’ who’s going to do the surgery? It isn’t going to be a paediatric urologist. It’s not like there is a generation of surgeons out there who will have had any experience of this very niche surgery. I just worry that people will become too scared to do anything for fear of doing the wrong thing, and then be putting off a problem that will be a real surgical challenge. Surgeons are getting less experienced, if anything.”

That a set of procedures already identified as torture and a human rights violation are continuing simply for the convenience of medical professionals might be hard for those unfamiliar with intersex issues to believe. For those who have been engaged in these matters for some time, quotes such as the above from Dr. Woodward come as no shock whatever.

In light of this continued wish among many physicians to reserve the status quo, and a reluctance of most national legislatures to outlaw I.G.M. (in a clear contrast to F.G.M.), the term ‘Disorders of Sex Development’ mostly serves as a figleaf for continued medical malpractice, and the post facto justification for the harm already done to generations of intersex people.

In a passage published this year, where Dreger displays a rare piece of self-rebuke, she admits as much herself:

‘Ultimately...the critics proved to be correct. The shift in terminology has not led to clinicians backing off on medically unnecessary surgeries. Indeed, constructing the conditions as “disorders” has fed some surgeons attitude that “all disorders that can be corrected should be.” I have lately joined those trying to shift the first “D” of “DSD” to differences.

This reversal from Dreger’s 2006 stance can only be considered welcome, but all too little, much too late. Sadly for Dreger, and even more so intersex infants and children diagnosed by irresponsible physicians today, the cat of intersex variations being recast as ‘disorders’ is now out of the bag. This outcome was quite predictable from the perspective of many intersex activists, and expressed clearly at the time to no avail. This unhappy episode shows the importance on the old feminist maxim ‘nothing about us, without us’.

Aiding Intersex Struggles

Intersex struggles will always concern most directly a small minority of the world’s population, and as such our liberation will require profound involvement from non-intersex allies. Thankfully, more and more nations have intersex movement groups, often recently established and imbued with the unique wellspring of energy that only a newly formed activist circle has access to. Respectful collaboration with these groups by non-intersex allies is always warmly welcomed.

Given the global scope of offences against the basic human dignity of intersex people, there are infinite possibilities for those wishing to assist our liberation getting involved. It’s likely that most of the readers of this piece live in a city where non-therapeutic surgeries are performed on intersex infants. At present only two nations have meaningfully outlawed Intersex Genital Mutilation. Ensuring bans are secured across the world, in a context of highly organised opposition to ‘gender ideology’, will surely be an uphill struggle. Even upon securing such laws on the books a further struggle will be required to ensure that these practices are genuinely abolished, rather than merely outlawed on paper.

However, the entrenchment of ‘DSD’ as a rearguard justification for the on-going offences against intersex people also shows the need for those engaging in this issue to engage with a wide range of intersex activists, before involving themselves in a decisive fashion. The intersex movement has found its voice, as shown by the proliferation of groups, projects and campaigns, achieving a string of substantive victories at a rate which can prove hard to keep track of. It now falls on our allies to listen, and follow as best they can in ending the systematised abuse we have been (and are still) expected to endure.