Tony Briffa writes on “Disorders of Sex Development”

Photo of Tony Briffa while mayor of Hobson's Bay
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.

More information

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.

In other languages

Italian, courtesy of Intersexioni
Spanish, courtesy of Brújula Intersexual

4 Comments

Kailana S. Alaniz

Bad medicine not wanted here.

Tony I agree in not agreeing on having a dsd that “must be corrected without the patients personal opinions of what they are taken into account”, as the lingo goes by doctors of the past. Free will to self determine matters and I hope others, doctors and parents learn to understand for themselves what that means. Living a life that isn’t ones own isn’t living, its torture. Dsd terminology leads to neglect and abuse that no one need ever experience, and I am happy to see dsd word usage become extinct.

Gina

Well said Tony I agree absolutely . Standing against pathologies action and disordering Intersex differences has been OII policy from the start. You have articulated perfectly the experience and thinking that informed that decision .

peace and party

hi tony , this is my comment for underneath your article!
for anyones information, all my years online i have not given up writing comments on oii australias website even though they have never processed my comments, acknowledged them and certainly never allowed them be seen! even though there are never* any comments usually!

i kneel to you tony, be aware of that, you are a good politician thats obvious and a great kind genuine person!
im happy to see my friend kailana finally gets their comment seen , its been a mutual complaint that our or anyones opinions/comments are not acknowledged with “thanks for your reply but we cant publish it”

anyway…well said tony, i am on a break from intersex activities but because this was written so well i had to respond! 🙂
thanks for speaking for most if not all of us! 🙂

“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.”

i could not have written it better, spoken maybe but, well said tony!

thanks for speaking out about the insult of being labeled a DSD , i use no capital letters for things i disrespect! so , it truly is a dsd and we , intersex, are not a dsd, nor do we have a dsd and the only disorder in this case is the disordering of “normal” naturally born Intersex babies/teens/adults thrown into insulting categories by the medical bible writers !

Sally Goldner

I applaud the consultative and thoughtful way this article has been written on a topic that could understandably invoke strong and passionate emotions – good work.

I haven’t experienced bodily difference to societal expections; all the same, hope it’s ok to say that I always feel gobsmacked by how the term DSD came about. A group of people who don’t experience the stituation made it up in a discussion an airport lounge without consulting the people themselves…I just find the lack of consultation bad enough regardless of whether the term DSD is “good” or “bad.”

So consulting hopefully can make a difference this time. Again, great piece.

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