Should Doctors Operate on Intersex Babies?

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In a word, no.

 

However, that wouldn’t make for a very readable Buzzfeed article, so instead we have this.

 
This article is gaining some traction on fb. It’s easy to see why. It has an identifiable subject who has been subjected to appalling medicalised violence in the name of orthodox protocols. Protocols that have been in place for over 50+ years.  It always helps to have some context, and background knowledge when reading about intersex issues.

 
Intersex is about far more than variant anatomy. That is simply the visible evidence of our difference. Most people born intersex do *not* have especially notable differences in anatomy at birth. Some of us have internal variations, genetic differences, physiological differences unseen to the eye. Some of us embody all of those elements, some a combination. It’s always our genitals they want to talk about. The unquestioned acceptance that being intersex is an outlier, and people born so cannot call themselves men or women is founded on the belief that the binary description of men and women, and the gender behaviours that are expected of them, are the only acceptable way to be human.

 
It is notable that intersex is almost always reduced to variant anatomy, and genitalia at that, when written about. We are rarely written about as people, still less people who have rights to decide what is done to us.  I’d like to know how long the same article written about a trans individual would last.

 
Not very long is my guess. And rightly so.

 
The pity-porn narrative that is often employed when talking about intersex issues is a common one. It rehashes details of our lives, in this case MC’s, and waits for the sympathy to flow. It offers little or no questioning of how and why these human rights abuses are permitted to continue. They just *are*. Obeisance to medical authority is evident throughout. A singular lack of anyone intersex speaking for themselves is notable.

 
It’s US-centric bias is painful, given that it was (and remains) the US that gave the world intersex medical protocols, and still enforce their management today. The same practices are enacted in the UK, Australia, across Europe and beyond. This is a world-wide phenomena.  Firstly with the Money gender enforcement hypothesis, and later with the more formalised 2005 document entitled Consensus Statement on the Management of Intersex Disorders. The whys and wherefores of how that document came into being can be read elsewhere on this page, but it owes much to the first wave of intersex advocacy forcing clinicians to to openly acknowledge what they had been doing for decades behind closed doors. The unintended consequence of the adoption of DsD protocols was to reify clinician’s hegemonic hold over the portrayal and treatment of people born intersex, and accelerate the use of all the tools available to medical science to erase, and refashion any visible evidence of someone identified intersex – whatever their age.

 
The word disorders has alone been responsible for a flurry of articles since it’s adoption. Many clinicians fight shy of using it in front of parents, because of it’s known, negative connotations. The pathologising of inherent variations in human development has been subjected to trenchant criticisms from numerous quarters, most notably the UN Special Rapporteur on Torture.

 

 

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…

 

 

It seems quite extraordinary that statements like this can pass unchallenged in 2015.

“In 2004, when Reimer was 38, he shot himself. It’s unclear why.”

The Slate carried a long article detailing the appalling circumstances of David Reimer’s life, the lies that were told, and Money’s refusal to ever acknowledge he’d done anything wrong. Money maintained his stance to the grave.  David Reimer’s brother committed suicide shortly after David. He was the mirror to which David – now assigned female and expected to grow as such – was to be compared. He was as much a part of this grotesque experiment as David was.  A family was utterly ruined by a barbarically conducted circumcision, and single man’s determination to prove a hypothesis that gender is mutable, with a living human being.

Morgan Holmes addressed the Reimer case at some length in their critique of intersex protocols, Intersex: A Perilous Difference:-
“When bodies do not meet up with social expectations, regardless of how normal their variation may be within “nature”, they have traditionally been perceived by families and physicians as profoundly unnatural and absolutely intolerable: furthermore, patients are diagnosed and managed with the specific goal of making their bodies match normal social expectations. Julia Epstein.

Further into the Buzzfeed article we can read uncontested statements made by a surgeon who enacts intersex genital surgeries. This quote would be laughable if this surgeon didn’t actually believe it to be true.

“DiSandro says he advocates for reversible and minimally invasive surgeries.”

One is left to wonder what part of an orchidectomy, or clitorectomy is reversible? He continues in the same vein:-

“Performing the surgeries early, before babies are old enough to remember it, spares them the pain of having to go through it all later on in life, he said. “Forcing children to be raised with ambiguous genitalia is really tough — that’s almost unethical.”

Many do remember, and many, many have scars to tell of what has gone before. We don’t have to remember – our bodies tell their own story.  Vaginoplasty surgeries are routinely carried out in the first 2 years of life. The point is that these surgeries have developed precisely because they are not supposed to be reversible. They were adopted as an intrinsic part of Money’s “gender enforcement” hypotheses, and remain in place today for the exact same reasons, even if the language and justifications are different today.   The same justfications are constantly recycled in interview after interview .  Their constant restatement serving to show how unwilling doctors are to admit the human rights abuses at the heart of these processes, and how determined they are to continue as before.

 
The belief that surgeries and other interventions are a one-off event is widely held as true. It isn’t. Doctors assure parents, and parents desperately want to believe it to be true. By the time they learn otherwise, the die has been cast. The process is en train.

 
Surgeons often have to repeat the exact same procedures several times – referring to them as revisions. Any surgery in the most sensitive area of the human body leaves scars, repeat surgeries leave many scars, loss of sensate experience, pain and often very poor outcomes for the individual. Surgeons never fail to describe their efforts as improvements, and like the clinician quoted here, express a complete inability to comprehend the possibility that people are either able to decide for themselves when they are old enough, or should be permitted to grow up unmarked.

“You have to remember, there are things we know now in medicine that we may not have known then,” Woolwine said. “Hindsight is always 20/20.”

Clinicians, parents and affected intersex people have known for decades the negative impact of interventions on people born intersex. For many decades clinicians simply denied our existence, and taught parents to do the same.

 
Instead mis-assignments and medically unnecessary surgeries, and ethically questionable in utero interventions that compromise health/safety and intimate, sensual experience and continue unabated. Interventions that continue to hold to the belief that the sex/gender relationship is immutable, and refashioning an infant’s body will shape and forge their future identity, and sexuality.

 
Nowhere will you read it publicly, but intersex protocols are predicated on the belief that each and everyone so remade by medical authority will be heterosexual, for being LGB is anathema. Pre-natal dexamethasone is injected into mothers to change both the anatomy and the future orientation of foetuses identified with CAH. Given before doctors can identify the sex of the foetus, it targets many more than the girl children with CAH it is intended for. So disturbed were the Swedes by the negative developments discovered in children exposed to pre-natal dex they banned it’s used in Sweden. No such qualms have bothered clinicians anywhere else, and it’s use continues today. The only conclusion that can be drawn from that is a treatment value that is known to be experimental, and not a standard of care is perfectly acceptable if the target population is intersex.

 

Nobody subjected to these protocols has a say in their enactment. Parents are requested to give their consent – not the individuals. Which is why clinicians move to finish their work before the individual is 18 years of age.

 

 

After that people have legal agency. After the age of 18 doctors are for the most part completely uninterested in what an intersex individual has to say. That narrative has been repeated time without number since the first wave of intersex activism sprang up in the early 1990’s. It remains the situation today

 

It’s important people know who some of the the players are in this titanic struggle.

 

Eric Vilain and Alice Dreger are both quoted here. Both were instrumental in getting the current DsD protocols adopted. Eric Vilain was a defendant in the recent IAAF/Dutee Chand case in Lausanne – defending the right to exclude athletes like Dutee from competition unless they underwent medically un-necessary medical procedures that may actually harm their health.

 

Eric Vilain is looking for the genetic component that may/may not be the source of being LGBT.

 

Katrina Karkazis was part of the team, along with Dr Payoshni Mitra, that helped persuade the CAS to suspend those regulations. Regulations that adopted wholesale the currently adopted intersex protocols enacted on infants and young children.

 

The Crawfords are up against insuperable odds in fighting for MC’s rights in the US courts. It is an extraordinarily courageous thing to undertake. Medical authority has enormous resources, and have not been afraid to utilise them in their efforts to shut down any possibility of questioning their continued enactment of human rights abuses on anyone identified as intersex.

 
So yes, it is good to see the MC case still getting coverage. Far less so is reading yet another article that fails to ask clinicians at the heart of these procedures the searching questions that are needed to hold them to account.  The only people who can tell you who we are those of us born intersex. Being born intersex is to know what silencing and refusal to acknowledge our existence means. We are repeatedly used to promote one gimcrack theory after another about sex, orientation and gender – always the subject, never permitted to speak. Sometimes our toy choices are compared to those made by vervet monkeys.

 
The constant recycling of the same narrative doesn’t move intersex human rights forward, which is why clinicians prefer to remain on that safe ground. The focus should be on how and why these human rights abuses remain tolerated, not the continued prurient gaze at intersex people, and the intrusive speculation as to the contents of our pants.  We remain spoken about, not spoken to, denied personal autonomy and bodily integrity in the most personal decisions that can be made about a human being. Intersex should be taught about in schools – Emi Koyama showed how that could be done. In 2001. It would be a matter of moments to bring that document up-to-date. Instead we remain labeled as outliers, and many still struggle with the consequences of things done to them in childhood, and denied to this day.

 
Malta shows what is possible. These protocols should cease, and in their place legal protections for everyone born intersex, and a process of education and empowerment for society, parents and affected individuals alike.

 

It should happen now.