Intersex Awareness Day, 2013

Here are this year’s Intersex Awareness Day words, by Morgan Carpenter, OII Australia president.

Today is Intersex Awareness Day. In a nod to Stonewall, the date marks the first public protest by North American intersex activists. The event marks a good moment to pause and reflect, and honour the people who went before us.

In the past year we have achieved the inclusion of “intersex status” in anti-discrimination legislation for the first time, improved access to Medicare, the establishment of federal guidelines for gender recognition and, yesterday, we achieved a major impact on healthcare through a Senate Community Affairs Committee report on the involuntary or coerced sterilisation of intersex people.

I’m pleased to say that OII Australia played a key role in each of those developments.

Medicare

Medicare changes remove sex or gender from descriptions of therapeutic medical procedures, to ensure that they are open to all people with the relevant bodily characteristics or need. That’s hugely important.

The Pharmaceutical Benefits Scheme still has gender-specific access to hormone replacement treatment.

Anti-Discrimination Law

Inclusive federal anti-discrimination legislation became law on 1 August. It authentically recognises intersex as a biological attribute, distinct from gender identity and sexual orientation. It recognises that intersex people are born with innate differences of sex characteristics, such as anatomy or chromosomes.

It contains some exemptions: while people are otherwise protected, organisations are not required to implement or use systems that recognise non-binary gender identities. It’s ok for someone to say ’our booking system doesn’t support your identity’; it’s not ok for someone to be refused a service.

But because intersex is recognised as a biological attribute, the Attorney General’s Department believes that there will be no grounds for religious exemptions, including in education and hospitals. The legislation offers genuine, useful protection.

Marriage in ACT

Sadly, the ACT government’s move to legislate for full marriage equality was scaled back to provide only same sex marriage. “Almost all” people can marry – but not folks with no sex marker on birth certificates issued in Victoria.

Sex and gender recognition

Passports with an X sex marker have been around for a decade now, since Alex MacFarlane forced recognition of Alex’s Victorian birth certificate, showing no sex markers.

Sex and gender recognition guidelines enable adults to identify gender as F, M or X where a gender identification is necessary for interactions with federal institutions. This is adequate, for now, a great start. Intersex is not an arbitrary third sex that can be neatly boxed. People with intersex variations have the same range of sexual orientations and gender identities as non-intersex people.

The guidelines even recognise that people who otherwise prefer an X can obtain a passport with a binary sex marker.

We hope that States and Territories will improve on federal recognition guidelines and properly give all adults more choice. We admit to a huge amount of concern about proposals emanating from ACT, which to date have conflated sex and gender, and biology and identity, to arrive at multiple new possible birth certificate classifications including one for live infants and children and adults called “intersex”.

This is profoundly difficult for us. People with intersex variations identify our gender as male, female, both, neither, X. But recognition of a third, biologically defined sex would be qualitatively different – and not reflect gender identities any better than the current model, given that most intersex people have binary identities. Most importantly – why should it be defined, mandated even, by doctors?

What we actually want is a best fit binary assignment, that’s easily changeable as circumstances dictate.

We don’t want intersex kids to be singled out for their differences – we live in a society that stigmatises those differences. More than that, it regards those changes as something to be fixed, erased, surgically altered, often as early as possible.

To argue that a birth certificate changes that situation is a non sequitur, a logical fallacy, but it has potentially damaging consequences. Elsewhere the mandatory classification of children as a third sex is seen as “purification” of male and female categories, an incentivisation of surgical intervention. At the very least, it does nothing to address the most significant human rights issues facing people with intersex variations – in fact, it pushes them back, disregarding their significance, placing identity issues and concerns over those around bodily autonomy. It turns Maslow’s Hierarchy of Needs on its head (prioritising issues of belonging or esteem ahead of issues of safety, the body).

Unnecessary surgeries

Intersex people are regarded by medicine as having ‘Disorders of Sex Development’, the term ensures that sterilisations and unnecessary genital surgeries continue today. This remains our most fundamental concern. Genital surgeries continue in Australia to make infants and children “appear” male or female.

Every individual intersex member of OII Australia has experienced some form of non-consensual or coercive medical intervention, including:

Pressure to conform to gender norms and to be a “real man” or “real woman”.
Involuntary sterilisation and clitorectomy (clitoris removal or reduction) as an infant, child or adolescent.
Medical and familial pressure to take hormone treatment or genital “normalisation” surgery.
Surgical intervention that went outside the terms of consent, including surgery that was normalising without consent.
Disclosure of non-relevant medical data to third parties without consent.

Things are moving internationally and nationally.

This month the Council of Europe has passed a resolution to protect children’s right to physical integrity, including proper psychosocial support, ensuring that “no-one is subjected to unnecessary medical or surgical treatment that is cosmetic rather than vital for health during infancy or childhood”.

Senate report on involuntary or coerced sterilisation

Data on what is happening today in Australia has become more public due to a Senate Inquiry on the involuntary or coerced sterilisation of intersex people that reported yesterday. We’re still digesting the findings, but they recognise cosmetic ‘normalisation’ and sterilisations as the most important issues for our community, and they change the game.

The inquiry revealed the number of ‘genital reconstruction’ surgeries of infants often aged under 2 as 10-15 at a single hospital in Melbourne. It also showed that there’s no data for anywhere else.

The Australasian Paediatric Endocrine Group, a clinician group, acknowledges “particular concern regarding sexual function and sensation”. Clinicians also acknowledge inadequate support for families and individuals.

Approved “psychosocial” rationales for therapeutic surgeries are astounding. A 2006 clinician “consensus document” that coined the term “DSD” defined those therapeutic rationales as “minimizing family concern and distress” and “mitigating the risks of stigmatization and gender-identity confusion”.

Victoria is the only State or Territory to publish a framework for interventions. It should be commended for doing so. Protocols elsewhere are not published or subject to scrutiny. In Victoria, psychosocial rationales include “reduced opportunities for marriage or intimate relationships” and reduced “capacity to earn an income, risk of social isolation… social stigma associated with having genitalia that does not match the gender in which the person lives”.

These rationales must come as a surprise to trans activists, and to campaigners against Female Genital Mutilation.

We recommended a focus on family counselling rather than genital surgery. The Senate Inquiry largely agreed with us:

3.129 The proposals put forward by Organisation Intersex International have merit, and are consistent with the committee’s conclusions. The committee believes that a protocol covering ‘normalising’ surgery should be developed, and then adhered to in all cases of intersex children. Such a guideline should be consistent with Organisational Intersex International’s recommendations…

Those recommendations include:

Medical interventions should not be based on psychosocial adjustment or genital appearance.
Medical intervention should be deferred wherever possible until the patient is able to freely give full and informed consent; this is known as “Gillick competence”.
Necessary medical intervention on minors should preserve the potential for different life paths and identities until the patient is old enough to consent.

Sterilisations take place due to risk of cancer, but the data on risk is poorly evidenced. We believe sterilisations have been carried out so frequently that they diminish clinicians’ ability to accurately assess risk. We believe that’s partly because they’ve been used to reinforce an assigned sex of rearing.

The Senate Inquiry were gentle in their assessment of this:

4.28 … confusion between treatment options to manage cancer risk and treatment options to manage intersex could undermine confidence in the neutrality of those advocating for surgical interventions…
4.39 … clinical intervention pathways stated to be based on probabilities of cancer risk may be encapsulating treatment decisions based on other factors, such as the desire to conduct normalising surgery… Treating cancer may be regarded as unambiguously therapeutic treatment, while normalising surgery may not. Thus basing a decision on cancer risk might avoid the need for court oversight in a way that a decision based on other factors might not

These surgeries must cease; they create lifelong patients, shame, stigma and trauma. We need evidence based surgical treatment, with full disclosure. We need proper psychosocial support that is not predicated on gender-specific outcomes.

The report calls for oversight, scrutiny, and regular reviews.

The report, however, is not law. It needs to be implemented.

In a context where no intersex-led intersex community organisations have significant funding, or capacity to work with states and territories, and all are volunteer run, we want our community to be resourced to meet our needs. We hope the Senate recommendation here will help.

Ending normalisation

So, people with intersex variations experience homophobia differently, stigmatisation not because of our identities but because of our bodies.

The Senate report shows a somewhat startlingly clear understanding:

3.109 As OII commented, 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…

And there are no control studies comparing with people who have not undergone surgical assignment. The necessity of normalising intervention is not questioned. In their conclusion:

6.30 A key example of our lack of understanding of how to respond to intersex diversity can be seen in the clinical research on sex and gender of intersex people. The medical understanding of intersex is so strongly focussed on binary sex and gender that, even though its subjects have some sort of sex or gender ambiguity, the committee is unaware of any evidence to show that there are poor clinical or social outcomes from not assigning a sex to intersex infants. Why? Because it appears never to have even been considered or researched. Enormous effort has gone into assigning and ‘normalising’ sex: none has gone into asking whether this is necessary or beneficial.

We thank the Committee members and staff for this welcome and important report.

We wish to live in a society where we are not obliged to conform to sex and gender norms, where our biological distinctiveness is not treated as if it’s shameful, or errant.

Where we are protected despite our innate differences, and where intersex people are also not singled out or “othered” as a class, where we are assigned a binary sex at birth but where it is easily mutable – and where we can choose a non-binary or other classification if we want, as an adult.

We want respectful treatment that is based on actual need not assumed need. On our actual bodies, not those of our assumed gender identities.

Hopefully, by the next Intersex Awareness Day we’ll see just as striking advances to meet our core health and human rights needs. The hard work of implementation.

Press

Star Observer, 25 October 2013, Column – Intersex rights: the next fight

Intersex Human Rights Australia