Safe Schools Symposium: Inclusive schools for students with intersex variations

On 30 July 2015, Morgan gave a presentation on “Inclusive schools for students with intersex variations” at the National Safe Schools Symposium, held at the University of Sydney on 30 July 2015.

Abstract

Intersex people are born with genetic, hormonal or physical sex characteristics that are not typically ‘male’ or ‘female’. Intersex people have a diversity of bodies, genders and other identities Many are heterosexual and cisgender, while others are not. Find out more about intersex in this workshop, and learn how you can be supportive and inclusive of students with intersex variations in your school.

Presentation

Morgan Carpenter, president of Organisation Intersex International Australia, a national intersex organisation. Like our sibling organisation, the AIS Support Group, we’re run by volunteers, with no funding.

I’d like to acknowledge the Gadigal people of the Eora nation, and pay my respects to their elders past and present, and the elders of the intersex movement.

[an introductory exercise took place at this point]

Intersex people are born with atypical sex characteristics. Intersex traits are physical. Many intersex variations exist; intersex is a spectrum or umbrella. A German researcher states they “comprise a heterogeneous group … with at least 40 different entities of which most are genetically determined.”

And intersex variations are diagnosed: with long names like androgen insensitivity, or 5 alpha reductase deficiency, congenital adrenal hyperplasia or Klinefelter syndrome. “An exact diagnosis is lacking in 10 to 80% of the cases” (Hiort, 2013). Intersex can mean a different number of sex chromosomes; different physical responses to sex hormones; or different developmental hormone balances and anatomies.

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, explicitly intended to make intersex bodies conform to social norms for a specific sex or gender. On the other hand, we increasingly face misgendering, through expectations to identify as a third gender or sex, to transgress gender norms.

Discussions about intersex often use intersex to deconstruct sex, gender and heterosexuality, rather than address actual human rights issues and medical ethics. It might be a surprise to read the details about this workshop where I say that most intersex people are heterosexual and cisgender.

Of course, some of us are queer, and for some us our gender identities are hard won, without the benefit of lifelong recognition.

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

Allied with that, are the effects of secrecy, shame and stigmatisation.

LGBT and LGBTI

Since August 2013, sexual orientation, gender identity, sex, disability and intersex status have all been independent attributes in federal discrimination law (ComLaw, 2013).

Intersex inclusion in LGBTI recognises that we all face stigma because of social expectations about what it means to be a real man or a real woman. But there is still a lot of confusion about intersex.

intersex is not a gender identity issue. Intersex people don’t all share the same gender identity. We have many different gender identities, just like non-intersex people.
assuming the intersex experience is one of transition, when some of us do, but some others are physically incapable of transitioning (i.e. Complete Androgen Insensitivity Syndrome).
treating surgical interventions as an issue where a doctor can assign the wrong gender, rather than an issue of consent.
for that matter, treating intersex and trans issues both as sexuality. Peter Cosgrove did this earlier in the week. On the one hand, it was great that he called attention to mental health of LGBTI people, but on the other hand, he assumed we’re all non-heterosexual.

These issues complicate intersex research, and healthcare, and our own community development. These approaches ignore our histories; they replace our histories with something other.

A historical perspective

Historicized as hermaphrodites, greek gods or monsters, in practice intersex has been more often a case for infanticide or the freakshow.

Prior to the 1950s the local situation is illustrated by the annulled marriage of a Melbourne woman described as “congenitally frigid”, unable to adequately participate in heterosexual intercourse (Richardson, 2012).

For a full half century from the 1950s, an “optimal gender model” enacted a belief in nurture, and the malleability of human identity: the genitals of intersex infants were aligned with sex of rearing; to ensure they and their partners don’t have gender issues. Secrecy was the norm, maintained into adulthood, sometimes throughout life, to ensure “normal” physical and psychosocial development. Other people were often told that they would never meet anyone else with the same variation (Senate, 2013).

Surgeries were also heteronormative, to prepare bodies for heterosexual intercourse.

Elements of this are still true: secrecy is supposed to have ended in 2006. Since 2006, intersex variations have been “disorders of sex development” (Houk et al, 2006), a label and clinical approach which has seen increasing medicalisation of bodily diversity simply where it is atypical, not for any other coincidental medical issues.

But specialist clinicians still believe that boys need to stand up to urinate, and larger clitorises need to be surgically reduced (APEG, 2013).

Legal frameworks, including those on FGM, still permit these interventions. A key 2006 clinician paper defined “psychosocial” therapeutic rationales as including “minimizing family concern and distress”, and “mitigating the risks of stigmatization and gender-identity confusion” (Houk et al, 2006).

The main relevant clinician organisation still supports and recommends infant surgery to “allow the child to develop without the psychosocial stigma or distress which is associated with having genitalia incongruous with the sex of rearing” (APEG, 2013).

Surgery is “given” for psychosocial rationales that, in Victoria, even aim to improve marriage prospects (Victoria, 2013). All such rationales entangle issues of gender identity and sexuality.

A 2014 medical paper still describes an intersex birth as a “challenging clinical emergency” (Pasterski, 2014), while another in 2013 questions how psychological support for parents and children, based on an ideology of self-acceptance, can co-exist with the “centrality” of surgical interventions (Liao and Simmonds, 2013).

Clinicians argue that current practices are ok; surgical techniques have improved, but even still they have “particular concern” about post-surgical sexual function and sensation (APEG, 2013).

There remains a weak evidence base, acknowledged by a 2013 Senate Community Affairs Committee inquiry into the “involuntary or coerced sterilisation of intersex people in Australia”. It acknowledged the erasure of intersex differences; and found there is no long term follow-up here. It was “disturbed” by medical preconceptions of normality, and it stated, the “status quo is unacceptable” – but its recommendations have not been implemented.

In recent weeks, the federal government said this is a matter for states and territories – and it endorsed the non-binding Victorian guidelines that talk about interventions to improve marriage prospects.

Listening to stories

Georgiann Davis, friend and author describes how she was diagnosed at age 13, following abdominal pains. She had an intersex variation called “complete androgen insensitivity, and internal testes – but she was told by doctors that she had underdeveloped ovaries, at risk of cancer. She only discovered the truth at age 19 and she was so shocked that she, felt so freakish, that she threw her medical records into a garbage bin:

I remember thinking I must be a real freak if even my parents hadn’t been able to tell me the truth.

It wasn’t until she was 27, and exposure to feminism, and gender and sexuality studies that she began to feel empowered, and look for a support group.

In my own case, like a majority of people with intersex and XY chromosomes, I don’t have a very clear diagnosis. I was an adult, but the word intersex was never used.

The first thing that happened was that I went onto testosterone. A year later, I had the first surgery, and I ended up having 4 surgeries in 4 months. It wasn’t supposed to be 4, it was supposed to be 1, then 2, then more. And they took me much further out of my comfort zone than planned, and further than agreed. Not all the outcomes were consented to, and I was left with physical and mental health problems. Stumbling across an intersex support group years later helped take me out of depression; it was a life-saver.

We have little contact with school age students with intersex variations at present, but we talk regularly with parents. They tend to be exceptional parents: ones who have chosen to find independent advice, often against the advice of clinicians. In one case, the only referral that parents received outside the local clinical network was to a Canadian hospital website. A new parent-run group in Australia advises parents not to do web searches.

We know that there are other parents who are strongly invested in the surgical and other choices they made with doctors, and we know that some of them feel afraid of intersex activism as a result.

Other parents have found that the realities facing their child don’t match the initial guidance. So, we more often talk with parents of young children who have been subjected to the wrong kind of sex assignment surgery, or surgery that has resulted in more unexpected surgery.

Secrecy, knowledge and justice

What does it mean to go through surgeries where clinicians themselves have particular concern about post-surgical sexual function and sensation? And what does that mean for an LGBT framework that might deliberately grow to include people with intersex variations?

The philosopher Miranda Fricker (2008) describes “epistemic injustice”, produced by a lack of knowledge, where lived experience is devalued through the characteristics and powerlessness of a speaker. It includes a form, “hermeneutic injustice”, which means, an injustice about communication and interpretation. It happens where someone with lived experience is unable to make sense of their own experience because of a gap in collective understanding.

It’s the experience of suddenly finding out that something you’ve been struggling with, trying to find the words for, actually exists; it’s real, and there are other people who have shared the same experience.

Miranda Fricker gives a good example for today:

the difficulty of making sense of homosexual desire as a legitimate sexual orientation in a cultural-historical context where homosexuality is interpreted as perverse or shameful.

While this describes the situation of older lesbians and gay men, it’s also a powerful description of the impact now of medical models for intersex traits, where “patients” and their parents are encouraged to understand intersex bodies as having “medical disorders” that can be “fixed”.

The medical model separates individuals with intersex traits not just from communities and peer support, it separates them from the legal protections offered in federal anti-discrimination law.

This “hermeneutic injustice” leaves people isolated, suffering shame, isolation, and secrecy. That shame comes from knowing that your body had to be modified become socially acceptable, and often unloveable, surgery to help your parents accept you.

That secrecy leaves no words to name the experience. This even reflects my own story, unable to find a name until years after medical intervention. It’s exacerbated by identity-focused misconceptions about intersex, and perpetuated by changes in clinical language.

The evidence shows that we have often have poor mental health, comparable to women with a history of sexual or physical abuse. Other research links physical health and sexual issues to medical interventions.

Intersex stories

You’re unlikely to be told by many people that they are intersex, it’s probably going to be harder to decipher in the stories that folks tell.

The intersex people you encounter may not have the words to describe their experiences or their bodies.

They are unlikely to be public about it, and they may even have no idea themselves.

They may be very fearful about rejection, they might have issues because of scarring, or a history of repeated medical examinations and testing.

They might have a delayed or unusual puberty – with all the risks of stigmatisation that come with that. They may have stories about school holidays spent in hospital.

Lessons to take away

Much intersex advocacy work necessarily focuses on ending surgical and hormonal interventions on infants and children that still continue today.

The intersex movement is fighting for the right to not have sex assignment treatment, but the core of intersex activism is not an anti-surgery philosophy. It is a pro-consent philosophy. Surgeries and hormone treatments are ok when we decide they are right for us.

We also promote the radical ideology of self-acceptance. Just like gay and trans folks it’s ok to be ourselves, how we are. No body should be shameful.

Self acceptance needs contact with people who have had similar experiences. We don’t just need this after we make potentially life-changing decisions, we need that early on.

But what of the people who that leaves behind? Including people of school age who have gone through medical interventions? Those intersex people who are queer and those that are straight, those with a history of transition, and those without.

What lives can we have? How can we be included in LGBTI?

The work of Safe Schools is really important.

We need deliberate inclusion. We need inclusion that recognises us for how we are, without making assumptions that we’re queer or trans.

Recognition that intersex is a different issue, one of bodily diversity rather than one of sexuality or gender. Recognition that the intersex movement is in many ways a distinct movement, with distinct issues and an often different group of people.

We need visibility.

People need to know that it’s ok to be different. It’s ok to have different sex characteristics.

We all need to know that there is a growing community out here, with people who have had similar experiences.

More information

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