I’ve been intending to provide my thoughts on the issue of the use of the term “Disorders of Sex Development”, and here they are. I recognise this is a contentious issue in some parts of our community overseas, and it’s time to have a good, open, frank, respectful discussion about it.
I appreciate some people struggle with being born different to societal expectations of what is male and female (especially in their formative years) and that they might consider themselves as having a medical condition. I was in that same camp when I was a young person. I would have given anything to be “normal” and I almost consented to undergo surgeries at that time that I now know I would have regretted. I grew up believing I was a freak and not worthy of relationships etc because I wasn’t a proper girl/woman and couldn’t have children. I was treated like a freak by doctors. Since my first support group meeting with other intersex people in 1989 I have met many intersex people and I have learned to accept my natural biological variation. I don’t consider myself or any other intersex person as having a “disorder” or somehow being “defective”. Sure, we may have some medical issues, but lots of other people deal with infertility, hormone replacement therapy, osteoporosis, etc.
My wish for future generations of young intersex people is that they grow without the stigma and shame many of us experienced. I want them to have intersex role models, for them to know they are not defective. I want them to be afforded the right to make their own choices about their bodies, and to have wonderful relationships throughout their lives.
That is why I am personally against the use of “DSD”. That very term turns intersex variations into diseases requiring medical intervention, and being a “disorder” inherently puts the medical profession in the leading position as experts over intersex people.
We are collectively fighting a human rights campaign to give intersex people rights about our bodies and lives. We need to retain control of the dialogue and be in the box seat as experts of our issues and rights. Doctors have had that role, spoken for us and made all our decisions for many years already, and we’ve seen how that’s gone. As a growing movement we need to take control of the dialogue around intersex and not give in to the desire by many in the medical community who wish to see us continue as “disorders”. These are the same people that used to call us “abnormalities”, “defects” and “errors”. I’m pleased we’ve moved on from that but we need to continue to assert our identity and rights as a community and as a movement.
It’s very hard fighting stigma, shame and inappropriate medical interventions such as irreversible, non-consensual surgical interventions when we stigmatize ourselves by referring to ourselves (and each other) as having “disorders of sex development”. If we use that terminology we’ve lost the fight before it’s started. I also don’t think it’s respectful to each other. I don’t want anyone to consider me as having a DSD, just as I don’t see any other intersex person as having a disorder.
I look forward to considering the views of other intersex people about this issue.
Tony Briffa JP is the vice-president of OII Australia, and the vice-president of AISSGA.
Find out more information on local perspectives on “DSD” in the following articles.
- Submission on the ethics of genetic selection against intersex traits
- Statement on the Senate report ‘Involuntary or coerced sterilisation of intersex people in Australia’
- First cross-party speeches on intersex health in the Australian Senate
- Intersex for allies
- What is intersex? Defining intersex
- Intersex intersectionalities with disability
- All FAQs listed – a curated list of key articles on the OII Australia site.
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