Intersex-related research must have direct input from intersex community
Image: The intersex pride flag.
OCTOBER 26 is Intersex Awareness Day, a day about those of us born with sex characteristics that don鈥檛 fit typical binary notions for male or female bodies.
It鈥檚 the 19th Intersex Awareness Day since a bunch of 鈥渉ermaphrodites with attitude鈥� in Boston first outside a conference of paediatric doctors to protest medical interventions on infants and children born with intersex traits.
[showads听ad=MREC]Many of the same medical interventions are still practiced today 鈥� surgical and hormonal interventions that aim to make intersex bodies and psychological development 鈥渘ormal鈥�. This is supposed to address stigma but, in reality, diagnosis and treatment have a circular relationship with stigma. Medical interventions are to make intersex bodies conform to social norms for a specific sex or gender.
At a time when almost every Australian LGBT organisation has become an LGBTI one (the I represents intersex), and funders continue to fund the same work in the same organisations they supported when funding LGBT work, there remains little understanding of the medicalisation of intersex. In its place there is often a focus solely on identity, performativity, and legal classifications. But these have tightly-bound limits, and the decades since the Boston demonstration have seen increased disordering of intersex traits, what 鈥渆xponentially accelerated bio-medicalisation鈥�.
The last year has seen many examples of this and, thankfully, some positive developments.
In competitive sport, a 2013 medical journal how four women athletes from developing nations were subjected to clitoridectomies and sterilisation when they sought to compete in the London 2012 Olympics. The policy that forced this treatment on them with naturally high levels of testosterone 鈥� but it was in a July court judgment because it lacked an evidenced scientific basis.
In recent weeks, the Hudson Institute of Medical Research in Melbourne the discovery of a new 鈥渟yndrome leading to intersex鈥�, one of at least 40 different and mostly genetic entities already known. The institute remarked that only 30 per cent of people with intersex traits are diagnosed with a 鈥渟pecific genetic cause or disorder鈥�. It also acknowledges high levels of trauma and stress amongst intersex people, hoping that genetic research 鈥渨ill lead to earlier diagnosis, better treatment and decreased stress鈥�. The in creating trauma, and their profound impact on education, work and intimate lives, was ignored.
In and of itself, a greater understanding of the cause of intersex traits might be a good thing 鈥� but the context for such research shows otherwise. Generous public funds support genetic research programs, but peer and family support by intersex-led community organisations remain entirely unfunded.
At the same time, genetic testing that frames intersex traits as 鈥渟erious genetic conditions鈥� already leads to IVF treatment to prevent intersex births. In the UK, for example, those 鈥渟erious鈥� genetic variations include those of elite women athletes wishing to compete in the London 2012 Olympics. Australia鈥檚 National Health and Medical Research Council is currently , but the primary bases for determining their 鈥渟eriousness鈥� lie in stigma and social anxiety.
Intersex-led services are based on the simple principle of self-acceptance, and built upon shared experience. Intersex civil society organisations are the only organisations aware of our whole lifecycle 鈥� from conception through lived experience to end of life. They are also the only organisations capable of effective long term follow-up and support. Parents and prospective parents need direct contact with us.
In September this year, the UN launched a fantastic on intersex, detailing human rights violations and proposing action points for governments, media and allies. It was followed in September by a to the UN Human Rights Council and an on intersex.
I was fortunate to participate in the expert meeting, alongside other intersex human rights defenders, doctors and biomedical ethicists, child rights advocates and other experts. Afterwards, a US geneticist and paediatrician how human rights 鈥渢actics鈥� will 鈥減revent us from actually understanding what鈥檚 going on鈥� 鈥� as if intersex bodies exist to satisfy medical curiosity.
In the same month, an editorial in the prestigious British Medical Journal demonstrated real clinical leadership, : 鈥淧aediatricians鈥� confidence in the ability to construct genital anatomies to meet cultural expectations of appearance and function has not been borne out… experts in surgery have so far been unable to reach a consensus.
鈥淧arents may not realise that they are de facto opting for experimental surgery on their children. Furthermore, their emotional states during decision making may not be optimal… Parental regret can be high.鈥�
Two years ago the Australian Senate agreed, but its recommendations have been sidestepped by the Federal Government: they are a matter for states and territories, and clinicians, to resolve.
While our governments have prevaricated and focused on sex classifications, Malta this year became the to outlaw modifications to the sex characteristics of infants and children with intersex traits. It provides a for Australian governments to adopt.
Morgan Carpenter is the president of Organisation Intersex International Australia. For more information, visit 听You can also follow him on Twitter via听
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**This article was first published in the November听edition of the Star Observer, which is . To obtain a physical copy, to find out where you can grab one in Melbourne, Sydney, Brisbane, Adelaide, Canberra and select regional/coastal areas.
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