OII Australia president Morgan Carpenter writes on genetics research and more developments over the last twelve months in this year’s reflection on Intersex Awareness Day.
In recent weeks, the Hudson Institute of Medical Research in Melbourne announced the discovery of a new “syndrome leading to intersex”, 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 “specific genetic cause or disorder”. It also acknowledges high levels of trauma and stress amongst intersex people, hoping that genetic research “will lead to earlier diagnosis, better treatment and decreased stress”. The role of medical treatment 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 — 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 “serious genetic conditions” already leads to IVF treatment to prevent intersex births…
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 — 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.
Morgan will be speaking at UTS in Sydney on “Intersex bodies and the societies that shape them”, from midday on Intersex Awareness Day, Monday 26 October, in the new Dr Chau Chak Wing Building. More information.
Other things to check out:
- Publication of a joint submission to the World Health Organization on reform of the International Classification of Diseases.
- The launch of the Love Letters video project by Small Luk of Beyond the Boundary – Knowing and Concerns Intersex” (藩籬以外-認識及關愛雙性⼈).
- Lots more will be added to the Intersex Day project site throughout the day
Previous Intersex Awareness Days
Intersex Awareness Day posts by presidents of OII Australia in previous years: