The Intersex Right to Choose

“I had 24 surgeries and I didn’t have successful surgeries, they were experimenting on me. They didn’t have any idea what they were doing, but they thought they did”

Tiger Devore, born as an intersex individual in 1958 underwent 24 experimental surgeries through childhood to make his genitals look more masculine. His parents were told it was a necessary procedure to correct their abnormal child. They chose to assign his gender as male and fix it so physically. In 1984 he was the first intersex individuals to speak out against what had happened on live TV. It opened the floodgates for hundreds of intersex induvial, now adults, to speak out about their own experiences of childhood surgery, done without their own consent and with negative consequences.

“There is no health benefit. The belief is that they are saving the life of the child by giving them the chance to live as a normal male or female. And that is proved to be a false belief. It’s a mistake. The experiment has failed.”

Intersex is the term used to describe an individual born with sexual internal or external anatomy that does not neatly fit into the binary medical categories of ‘male’ or ‘female’. At birth, these individuals will most likely undergo “corrective” surgery followed by hormone therapy to assign, fix and reinforce a gender chosen for them. Only recently that it has it come to light that such surgery may not actually benefit the individual. At all. In many cases it is physically intrusive and psychologically damaging and as such is increasingly being recognised as a violation of human rights on the level of physical and mental abuse. And yet regardless, in hospitals across Western world, early intervention gender assignment surgery continues as normal medical procedure.

It is possible that 1 in 250 people fall outside of the binary ‘norms’ for sexual anatomy and as such could be classified as intersex and yet it is still very unacknowledged or accepted human condition. But as the children on whom the original ‘corrective’ and gender assigning surgery was performed become adults, and backed by the work of campaigners and intersex rights organisations, intersex individuals are starting to speak out. What they call for is an end to the unnecessary “normalising” and “corrective” gender assigning surgery carried out denying the right of the individual to able to make an informed choice.

Tiger Devore, recently released a statement alongside Alice Dreger, bioethicist and social justice worker, both speaking out against America’s use of such surgery. The medical profession appears to be seriously lagging behind. They highlight the need for intersex itself to become an accepted and a normalised gender and for society to protect the child’s right to develop as intersex and later make choices for themselves.

Intersex does not denote sexuality, nor are they hermaphrodites (which do not exist in the human species). Intersex develops from a range of factors that cause ambiguous sexual anatomy. It can stem from problems with chromosomes (such as XXY), mutations in genes or deficiencies in hormone production (such as CAH) which can affect the development of gonads, genitals and secondary sexual characteristics. But even without these factors there is also simply natural variation in genital size. For this reason the label ‘abnormal’ is obviously one that causes much offense amongst the intersex community.

But medicine likes definitions and “normals”. So medically a clitoris larger than 9cm (clitoromegaly) and a penis smaller than 2.5cm (micropenis) is considered “abnormal”. And where medicine sees a ‘problem’ it looks for a ‘solution’.

As Tiger Devore explained: “Parents want to fix and doctors want to do surgery. That combination is lethal for the child.”

History shows that intersex individuals have always existed. But corrective surgery is a 20th century phenomena. Before surgery existed, intersex individuals by all accountss led relatively normal lives, psychologically healthy. Alice Dreger explains in her book Hermaphrodites and the Medical Invention of Sex , only in the late 19th century were intersex individual’s diagnosed ‘ill’ in the eyes of the medical profession.

Dr Jorge J. Daboul, paediatric endocrinologist points out that at this time “medicine ‘discovered’ hard science and tried to reduce all human functions to mechanistic processes to be dissected and analysed. Physical norms were established and anything that differed from the norm was deemed abnormal.”

By the 1950s understanding of genetics and hormone function had made the diagnosis of DSD, Disorders of Sexual Development, more refined. Corrective surgery was developed by the urologist Hugh Hampton Young at the John Hopkins Hospital in Baltimore. Young worked alongside the endocrinologists Lawson Wilkins, who developed hormone therapy to reinforce the gender assignment and also the psychologist Dr John Money.

Money was a pioneer in the study of sexuality and gender identity. He proposed the theory that gender is a social cultural construct and can be led and developed by cues given to children. Rather than call into question the physical diagnosis of gender assignment, Money’s ideas were used to reinforce surgery. The idea being that if gender identity was plastic then gender assignment should indeed occur as early as possible and could be further secured, for the healthy psychological development of the child, by reinforcing the gender in the child’s upbringing. This is the model still used today.

Tiger explains how often parents are simply led to believe it is the best or only choice. “My parents were terrified as any parent is when they gave birth to a child that wasn’t ‘perfect’ and they didn’t know what to do…Their trust in the medical profession and opinion of doctors led them to believe they were doing the best for their child. My parents had no idea that 24 surgeries were going to be necessary. They didn’t put me through it. The physicians put me through it, the standards of care put me through it the social prejudices put me through it… It was failed and mistaken and shouldn’t have happened to me and shouldn’t happen to others kid either.”

Intersex surgery can be extensive and highly intrusive, the first surgery can be within the first year though often, as in Tigers case, there will be the need for repeated procedures throughout childhood. To make an intersex child ‘male’ doctors may descend the testes, relocate the urethra and attempt phalloplasty, construction of a penis shaft, which can be a difficult procedure. In the 50s and 60s very often feminisation of genetic males with micropenis occurred simply as it was an easier surgery.

The surgery on intersex babies, assigned as female but with ‘abnormally large’ female genitals, originally involved clitorectomy, and the amputation of most of the clitoris. Thankfully, this practice has been stopped. What does still continue is clitoral reduction. The clitoris is reduced but with the nerve tissue separated and repositioned to maintain some sensation. It is still very intrusive and has led organisations to label it as a violation comparable to female genital mutilation. Vaginoplasty, the rebuilding of the vagina can also occur, the complexity of this surgery, depends on the state of the genitals at birth.

As the paediatric surgeon I spoke to pointed out: “Surgery can be vital due to blocked urinary passages or potential bleeding into the pelvis.” However, these cases of necessity are in the minority. It appears the majority of surgeries are carried out to benefit the child psychologically and as Dr Alice Dreger the ethicist and author on this topic points out, in a misguided attempt to out to ‘empower’ the parents.

In fact, research shows that leaving an intersex individual to develop without surgery does not seem to promote psychological trauma, in fact it is the opposite. As the intersex community grows, increasing numbers are speaking out about the psychological problems they have faced having been surgically assigned a gender at birth without any choice in the matter.

“The rights to self determination, the right to bodily integrity is part of the rights of a child. Being able to say if you want surgery done to you or not is also an incredibly important part of medical ethics. None of those things are present for intersex kids.” Tiger Devore

Furthermore, recent research in neuroscience proves that brains are neither female or male, supporting the ideas of a more fluid gender spectrum. And in case doctors needed a modern social case study, they could look at the Dominican Republic where due to a common genetic mutation there is a relatively high frequency of a condition known as 5-alpha reductase deficiency. This deficiency causes males to be born with penises that only develop properly at puberty. Most of these children are raised as girls until that point when they begin living as men. It is a totally normalised and accepted gender pattern, even referenced in their folklore and mythology. So the problem in the West seems to be with society and medicine, not intersex individuals. Yet surgery remains common practice.

Intersex rights groups such as the ISNA and UKIA are growing and although there is still much debate as to whether a prelimary gender should still be assigned or not, they all unite on a call for an end to uninformed choices made without patients consent and unnecessary surgery. As Tiger Devores simply states

“We can no longer tolerate treating parent’s fear and discomfort at having given birth to an intersex child with irreversible surgeries and hormonal treatments that may be quite opposed to the identity or the possibilities for sexual pleasure for that child that will grow into an adult. It’s the child’s identity and the child’s genitalia and they should be the ones, not the parents or the doctors, who choose for themselves their identity and just what kind of genitals they want as young adults. “

There are some victories: The UN, The Special Rapporteur on Torture and the WHO in 2013 published reports calling for an outlaw to such ‘normalizing surgery” and changes to clinical practice. Last year the Council of Europe recognised the right for intersex persons to not have gender assignment surgery and treatment and in April 2015 Malta became the first country to prohibit non consensual medical intervention to assign gender or modify sexual anatomy.

Finally, last September saw the first ever meeting by the UN Office of the High Commissioner for Human Rights to discuss human rights violations against intersex individuals . In his powerful opening remarks Zeid Ra’ad Al Hussein, stated that differences and diversity, including the shapes of our body “be something we should celebrate and protect.”

But there is still a long way to go for as Zeid Ra’ad Al Hussein pointed out “the myth that all human beings belong to one of two separate sexes is deep rooted” But at least the intersex community and those on whom surgery was first performed now have an adult voice and the world is starting to listen.

In the UK last year the Rainbow list for the first time included intersex individuals as a unique category and in Australian there is now third gender category on passport documentation of “non specific”, highlighting an individual’s right to choose. The tide is definitely turning and as Tiger Devore concludes, “it is finally turning, hopefully, in the favour of the individual and our right to choose our own life.”

Written by science writer Katherine Templar-Lewis