Intersex has been added into the LGBTI rainbow family.
So it's the 'I' at the end.
It doesn't mean invisible, it means intersex.
Have you heard of intersex? Do you know what it is?
No, sorry. I'm not going to guess.
No, not a clue.
Intersex? It rings a bell.
No I don't actually, and I've been out for nearly 20 years
and I've got no idea.
This is Mardi Gras!
It's Fair Day, which is like the Sydney Mardi Gras festival, you know?
It kind of makes sense for us to be here
to tell people what intersex is.
So they can find out more and actually meet real people.
If you don't mind me asking
do either one of you identify as intersex?
I identify as female, but I am intersex.
I have XY chromosomes, so I have an intersex body.
I think it's really important to be visible
more so being invisible, or erased to be more to the point.
Intersex is a natural variation of people's chromosomes
or hormone levels
which means they're not typically male or female.
Intersex, or disorders of sex development
some people even call it differences in sex development
is an umbrella term for a range of conditions
where there's been a divergence in the development
of the sex chromosomes, genital anatomy or the gonads.
These conditions affect up to 2% of the population.
There's so many people out there that have this legacy
of secrecy, of shame, of dealing with stigma.
And there's so much silence about intersex still.
It can be quite shameful.
And that shame sort of perpetuates
that whole idea of intersex actually being fixed, in society
so it stops actually even being there anymore.
I'm the president of OII Australia.
We promote human rights and bodily autonomy
for people with intersex variations.
So what are you up to next during the Mardi Gras period?
One of the key human rights issues
is not really the existence of binary genders
but what is done to us medically
to make us conform to those norms.
I think the anxiety around intersex starts really early.
'Cause most people expect a boy or a girl.
There's been a trend to be able to fix that social anxiety.
Even though there's not necessarily always a medical emergency
that happens with intersex.
For me, I don't ever think I had a sick body that needed to be treated.
I had a body that didn't really conform
to expectations of what a female body should look like.
I have an intersex variation
that's referred to as complete androgen insensitivity syndrome.
I present female, I identify as being female, I look female.
For all other reasons I'm female.
Except I don't have a uterus, and I don't have ovaries, I had testes.
And my vagina was blind, it means it didn't lead to a uterus.
This is where an individual that has a XY chromosome pattern
but they have a genetic condition where
the male hormones in the body don't act on the body
hence a female appearance.
I grew up thinking that I couldn't actually tell anyone about it
because they wouldn't understand
and that it was my fault, and it was something
that was secret within our family.
and only our family
I didn't really understand how prevalent
intersex actually really is.
Doctors convinced my mother
that it was the right thing to do to have my undescended testes removed
when I was 11, I think?
Previous practice was to remove the testes, before puberty.
Because they were not thought to be needed, and also have a cancer risk.
The statistics that were used in order to explain that to my parents
were incredibly high, like 50% or something like that.
Now it's seen to be that the risk is actually quite low.
I remember lying down with a gown on
and a whole room full of doctors
and someone talking about my body
and about me like I wasn't even there.
And you know, they were like
"So we're just going to have a little look now."
And they'd insert either their fingers or something else into me.
That really resonates as a really bad thing.
That's kind of like, I feel like that's kind of rape experience.
But uh...
But different, because it was so clinical.
They did the surgery, and it healed and I went back to school
and had to make up all these lies about the great holiday I'd had
and things that I'd done.
That was kind of the beginning of like, starting to have to tell
a whole bunch of lies about myself
in order to stop people guessing the truth
about what my body was or who I was.
My parents consented to it
it created a lot of guilt with my mother for a long time.
We've had to talk about it a lot.
I feel like that surgery created more health problems
for me than it fixed.
We now know that if we keep the testes in the abdomen
the testosterone they produce gets converted to estrogen
and helps to feminise that person's appearance.
If those testes are removed
they need lifelong replacement of hormones.
Hello, how are you today?
Have you finished the script?
Yep, alright.
I know other XY women that haven't had that surgery.
They actually have their own natural hormones in their bodies.
You know how to use it?
Yeah, yeah.
Okay.
I've done it before.
I lament not having that.
Not having that sense of wholeness
that I knew what my base state was.
Instead I have to play chemical cocktail lab in my own body.
Outcomes for people with intersex, or DSD
haven't always been great.
Certainly one would hope patients that we're treating now
and the families that we look after now
would hopefully have less of these issues.
We discovered our daughter was intersex
when she was nine years old.
I feel the need to be anonymous because this isn't actually about me
it's about my daughter.
The GP had referred us on to a pediatrician
who thought that our daughter had two hernias.
And after going through ultrasounds
it was discovered that they were testes.
It was a feeling of loss, that the daughter who we had
we had suddenly discovered something
that might not sort of mean she was who we thought she was.
So as a parent, that was hard to deal with.
I was very emotional for a long time, for months.
I think the parents, it's one of the most stressful
experiences that they go through.
Questions of, how that child will fit into school
will they go through puberty normally
will they be able to have satisfying relationships
will they be able to have children?
So it turned out to be 5-alpha reductase deficiency.
When a child reaches puberty, her body could start to masculinise.
She could start to get body hair
usually where females would have very little body hair.
Her voice could deepen
her body might start to take the shape more of a male.
We started to tell our daughter about her body
when she was around ten.
And really just the basics.
That inside her body, instead of having ovaries, she had testes.
So she wouldn't be able to have a baby.
But she actually took that surprisingly well.
She actually came out with the comment,
"That means I'm unique."
And I thought, thank goodness.
Children are very accepting of variations and differences
and it's important we keep them informed throughout their childhood.
There's appropriate disclosure at
developmentally appropriate times in a child's life.
Surgery came up fairly quickly
so thank goodness she was 13 at the time
and old enough to contribute to that discussion.
She told us that she liked her body, the way that it was
she didn't want her body to change at all.
So she wanted to have the testes removed.
That was a huge decision.
Because as a mum
I didn't want to take anything away from her body
that was hers.
That was part of her, that made her who she is.
However, she wanted the testes removed.
And she identified as being female
so we supported her in that decision.
I feel fortunate that our daughter was at an age
where we were able to talk with her about it.
I feel that our family's one of the lucky families.
But I mean who knows what the future holds for her.
When she's in her twenties, she might feel
content, she might feel she made the right decision
she might not.
I don't know, but we'll deal with those things as they arise.
My personal circumstance, I feel the surgery
caused me nothing but problems.
You know, maybe I would've decided when I was a bit older
that I would like them out
and like deciding that is -
you know, on my own terms -
is a completely different thing than having that done to me.
So certainly, in the past care has been variable.
And these are areas that the medical profession are now looking to improve.
There isn't a homogenous clinician perspective about what happened.
In fact, there was a lot of variation in terms of what actually happened on the ground.
I'd like to think that things really have improved in terms of medical treatment
towards intersex infants, and adults alike.
But it's hard to really know.
Most people with intersex conditions don't talk about it.
They don't come out and talk about it, so how are we to know
who is happy with surgery
and who gets to a point where they think
'You know what? That shouldn't have been done.'
Stigma is an issue.
We think we have to address that stigma rather than
changing people's bodies to make them suffer less.
One of the key things I want to try to tell people about is
just how diverse we are.
We're not talking about a third sex, with a third kind of body.
We're talking about a huge range of diversity.
Together I think we can raise awareness because
the stigma arises from society
that doesn't understand.
Hopefully outcomes will be better
for current generations of children coming through.
I'd really love it if intersex people could just have that real sense of pride
that could go along with knowing who they are, and what they are
and being totally okay with that
and seeing it as being a blessing.
Let them enjoy their bodies.
Celebrate that difference.