Intersex Bodies and the Society That Shapes Them

Morgan Carpenter, president of Organisation Intersex International Australia, outlines the human rights issues facing intersex people, in Australia and around the world. He also explains their mental health impact … and what we can do to help challenge the status quo.

The situation for people with intersex variations is bleak. We may be subjects of infanticide in Uganda, or sex assignment based on parental attitudes towards dowries in Malaysia. Elite intersex women athletes may be subjected to humiliation, clitorectomy and sterilisation. We have the beginnings of inclusion in some international statements, and some human rights advances in Australia but even here, intersex girls are excluded from policy frameworks preventing female genital mutilation. We’re being cleansed from the gene pool in Australia, and many other countries.

‘Caught between two contrasting visions of who and how we should be’

Intersex people face a range of health and human rights issues, and deep-seated stigma, caught between two contrasting visions of who and how we should be. On the one hand, this includes medical interventions in infancy and childhood that are explicitly intended to make intersex bodies conform to social norms for a specific sex or gender. On the other hand, people with intersex variations increasingly face misgendering, through social expectations to identify as a third gender or sex, to challenge or transgress gender norms. Neither approach lets us truly make our own choices.

The key issue for most intersex people is not the existence of two binary sexes, but what is done to us to make us conform to those two narrow classifications.

People with intersex variations are born with atypical physical sex characteristics, including genetic, hormonal and anatomical differences. Sex is a continuum. Many forms of intersex exist; it is a spectrum or umbrella term, rather than a single category. A German researcher states that intersex comprises ‘a heterogeneous group … with at least 40 different entities of which most are genetically determined. An exact diagnosis is lacking in 10 to 80% of the cases.’ It can include differences in the number of sex chromosomes; and different tissue responses to sex hormones, or a different hormone balance.

Intersex differences may be apparent at birth. Some common intersex variations are diagnosed prenatally. Some intersex traits become apparent at puberty, or when trying to conceive, or through random chance.

Intersex is a lived experience of the body. Intersex bodies do not meet societal expectations. We suffer stigma and pathologisation as a result. Intersex people have non-heteronormative bodies, bodies that affect perceptions of our realness as men or women. Cultural, familial and medical attitudes govern to which sex we are assigned. Surgical and other medical interventions are made to ensure we conform to the norm, to erase intersex differences.

The key issue for most intersex people is not the existence of two binary sexes, but what is done to us to make us conform to those two narrow classifications.

What underlies medical interventions is our superficial characteristics, and concepts of what it means to be a real man, or a real woman.

Disorders of sex development: ‘hugely controversial’

In 2006, a group of doctors adopted the term Disorders of Sex Development (DSD) to describe intersex variations. DSD is hugely controversial, and the term intersex is itself now more widespread than in 2006, including in national legislation and regulation, medical guidance, and usages by international institutions.

The term DSD, and framework inherent to disordering intersex bodies, ensure that sterilisations and normalising genital surgeries continue today, everywhere Western medicine is practiced, to make infants and children ‘appear’ stereotypically male or female.

A 2006 clinician document that coined DSD defined ‘psychosocial’ therapeutic rationales as including ‘minimizing family concern and distress’, and ‘mitigating the risks of stigmatization and gender-identity confusion’.

A medical paper published this year still describes an intersex birth as a ‘challenging clinical emergency’. Last year an Australian Senate committee said: ‘normalisation surgery is more than physical reconstruction. The surgery is intended to deconstruct an intersex physiology and, in turn, construct an identity that conforms with stereotypical male and female gender categories’

These surgeries happen even while a major clinician group in Australia, New Zealand and the Pacific acknowledges ‘particular concern’ regarding post-surgical sexual function and sensation.

Surgery and conforming to ‘normality’

The report described preconceptions of ‘normality’ underlying intervention as raising ‘disturbing questions’. It looked a Dutch research: a large 2011 study of physicians' views on the desirable size of women’s labia minora, which found that male doctors were more likely to recommend reduction surgery than female doctors.

There’s similar data on perceptions of a ‘normal’ sized clitoris from the UK, and the correct placement of a pee-hole in boys’ genitals from Germany: literature on genital surgeries on intersex infants and children simply takes the concepts of normality and abnormality for granted.

Surgeries are carried out on infant girls identical to surgeries considered mutilating in non-intersex girls.

It is a social imperative in our societies to make people appear ‘normal’, or to encourage them to look ‘normal’.

It isn’t just an issue for children: the impact is lifelong. Adults, too, are subject to coercion. In competitive sports, the IOC for example mandates that national authorities: ‘actively investigate any perceived deviation in sex characteristics’. Other sports codes follow suit. This means that ‘butch women’ in particular are at risk of being singled out for humiliation and unnecessary medical treatment.

A British Medical Journal article in April documented how four women athletes with a diagnosis of 5 alpha reductase deficiency, each from developing nations, were subjected to clitorectomies and removal of their gonads — with no guarantee of continued access to medical treatment for the rest of their lives.

Most intersex people are heterosexual, most are not trans; we’re a different community,

Intersex and the LGBT community

What’s the relevance for LGBT people?

Historically, surgeries are heteronormative — preparing people for heterosexual intercourse.

Research on intersex foetuses and infants is longstanding, and has been used to find a cure for homosexuality. A 1990 article entitled, ‘Will Prenatal Hormone Treatment Prevent Homosexuality?’ appeared in the peer-reviewed Journal of Child and Adolescent Psychopharmacology; it used research on an intersex difference, CAH, to explore the potential for ‘prenatal hormone screening or treatment’ to prevent homosexuality. The ‘scientific groundwork’ was ‘insufficient’ at that time, but prenatal screening and treatment of intersex traits continues.

A 2010 medical paper shows how low interest in dolls, babies and men – and interest in what they consider to be men’s occupations and games is constructed as ‘abnormal,’ and ‘potentially preventable with prenatal’ hormone treatment.

In some intersex variations, such as 47,XXY, we know that up to 88% of foetuses identified are terminated, framed as major genetic defects — despite no impact on life expectancy, and low rates of diagnosis skewing diagnosis data.

In the UK, many of the most common and best known intersex variations, are all ‘severe genetic conditions’ able to be screened out, prenatally via IVF.

Those ‘severe’ conditions include those of all four elite women athletes subjected to clitorectomies and sterilisation for social, non-medical, reasons. Let’s be clear, the only rationales for inclusion of 5aRD or AIS in a list of approved diagnoses to de-select from the gene pool are perceived deviations from sex and gender norms.

The real scandals are the stigmatising, offensive reporting, and impact on the lives of people with intersex variations.

A year ago the American Journal of Bioethics published 11 papers on the ethics of genetic testing in embryo and cells before IVF. Many findings were similar, that issues of IS, GI and SO are entangled, or related. A quote from one of them: ‘Parental choice against intersex may thus conceal biases against same-sex attractedness and gender nonconformity.’

These issues help explain why medical intervention is embedded in our society.

Intersex and disability

There are other reasons, too. Other intersectionalities.

Disability? Intersex traits and variations may be considered to be impairments. There are many commonalities with dwarfism and albinism in particular.

International Classification of Diseases has ~50 intersex-related diagnoses, often with multiple layers of pathologisation: inborn errors of sex development, disorders of sex development, abnormal, malformations, disease, disorders, pathology.

As late as 1921, medical journals contained articles declaring that ‘a physical examination of [female homosexuals] will in practically every instance disclose an abnormally prominent clitoris’ and that this is ‘particularly so in coloured women’.

Sexism and heterosexism are apparent in regular crops of news articles. Just in the last week, we’ve seen most newspapers post troubling, salacious, misgendering (and ultimately uninteresting) stories about a Penthouse model with an agent who claims to be the girlfriend of an absent Michael Phelps.

Press articles are uncommon, but syndicate widely when they do, and with a similar approach without even celebrity interest. Earlier this year, in an article on a man with CAH, the Huffington Post said, ‘Mr Chen is reported to have told doctors that he and his wife have had intercourse — we can’t help but wonder how that worked’.

The sex and gender of people with intersex variations appears always suspect.

The real scandals are the stigmatising, offensive reporting, and impact on the lives of people with intersex variations.

In many times and places, sex assignments encapsulate cultural biases toward men and women. In Malaysia, research showed that assignments of infants with the same intersex variation differed depending on their parent’s culture and attitudes towards dowries.

The same has been reported in the Middle East and other areas.

Female genital mutilation and psychosocial issues

Female Genital Mutilation is criminalised, with no exemptions for ‘cultural, religious or other social customs’ — but there’s an exemption for surgeries on a person whose sex is ambiguous.

The Health Department here in Victoria has published guidelines for medical intervention on intersex kids. It’s probably unique in doing so, and that’s great. But psychosocial rationales for surgery include cultural issues: ‘reduced opportunities for marriage’, and ‘risk of social isolation’.

Surgeries are carried out on infant girls identical to surgeries considered mutilating in non-intersex girls.

Intersex women need to be part of conversations about women’s health.

Intersex and society

According to researcher Dan Ghattas, ‘Nearly all over the world, intersex bodies are considered to be barely, or not at all, capable of being integrated into the social order.’

In asking why, our Senate committee report said: ‘The medical understanding of intersex is so strongly focussed on binary sex and gender … Enormous effort has gone into assigning and ‘normalising’ sex: none has gone into asking whether this is necessary or beneficial.’

So far, the few who ask questions are mostly those of us who are directly affected.

The kinds of questions we ask are about our rights to choose for ourselves, about how we manage stigma. About how bodies and identities do not need to match each other to be valid.

Intersex policy internationally

In the last two years we’ve seen the beginnings of a shift, with statements by the UN Special Rapporteur on Torture, an inter-agency statement on forced sterilisation by the WHO and six other UN agencies, a Council of Europe Resolution on children’s right to physical integrity and court action in the US. Last month, the Maltese government has tabled legislation to create a new right to physical integrity and bodily autonomy.

Intersex policy in Australia

In Australia, we’ve seen inclusion of ‘intersex status’ as a physical attribute in anti-discrimination law. The law authentically recognises ‘intersex status’ as biological, distinct from sex, gender identity and sexual orientation. We’ve also seen the removal of sex and gender terms from descriptions of healthcare procedures funded by Medicare. Those procedures are open to all people with relevant anatomy or need.

Passports with an X sex marker have been around for over a decade. They’re often conflated with intersex status, but anyone can have a non-binary identity, and few intersex people do in practice. They’re important for some intersex and some trans folk, alike. So long as they are voluntary, opt in.

The Senate inquiry on involuntary or coerced sterilisation (published in October 2013) was the first report on intersex health and wellbeing by a national parliament. ‘Normalising appearance goes hand in hand with the stigmatisation of difference,’ it said; it found aspects of current medical practices ‘disturbing’.

On ‘psychosocial’ reasons to conduct normalising surgery, the inquiry warned ‘there is great danger of this being a circular argument that avoids the central issues’. It recommended deferring interventions that are not medically necessary until the persons affected can consent, and called for national human rights-based standards, effective oversight, linkages between community organisations and hospitals, and long term follow-up.

Intersex is a human rights issue, not a medical issue.

It also called for funding for peer support and counselling, including support for families of infants and children.

This is yet to be implemented.

Earlier this month, the upper house of the New South Wales Parliament passed a consensus motion calling on that State government to work with the Commonwealth to implement the Senate report. In the State election here, the only party that is talking action on health and human issues is the Greens.

Intersex stigma and mental health

What does it mean for your mental health when:

You realise that your body had to be surgically modified to be socially acceptable?

Up to 88% of pregnancies with your intersex variation are terminated?

You’re subjected to reparative therapy, often in infancy?

Your parents are told to tell no one.

The limited data on long-term outcomes identifies ‘particular concern’ regarding sexual function and sensation.

Clinicians change the language used, in a way that remedicalises, and disconnects, youth?

Secrecy and shame are still the norm for far too many people. The impact of trauma on our lives, relationships and visibility cannot be overstated.

For adults, experiences of trauma, secrecy and stigmatisation mean that engagement levels are low. We worry about the anecdotal evidence but lack of data on suicidality.

Social justice for intersex people

While waiting for action, what do human rights and social justice for intersex people look like?

It means respect for the bodily autonomy and physical integrity of people with intersex variations.

It means a focus on family support and counselling — peer support — a far better solution to stigma than surgery.

It means recognition: an apology, counselling, and support to overcome legacies of trauma, and reparation. And funding for intersex-led organising and community building.

Challenging misconceptions

We need allies who will challenge misconceptions.

Social justice means an end to misgendering, the portrayal of intersex as if it describes a non-binary gender identity. It means an understanding of intersex as a form of bodily diversity.

If you talk about LGBTI, you must include actual issues that affect intersex people.

Intersex is a human rights issue, not a medical issue.

Challenge stigmatisation and pathologisation of intersex traits. Support advocacy work that does this.

Challenge the medicalisation and de-selection of intersex traits.

Challenge your new state government to implement the Senate report and act on intersex health and human rights.

Portrait of Morgan Carpenter

Morgan Carpenter is the president of OII Australia, a national intersex-led Public Benevolent Institution. Morgan migrated permanently to Australia in 2005 and has been active with OII Australia since 2009. Morgan works as an analyst for an IT company, with a social and economic policy research background.

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