Friday, 12 February 2010

Who Elected Me?

From Ali Russell of Zapruder's Other Films:
"Just wanted to let you know the story edit is coming along really well, I had a meeting with Andrew yesterday to review the rough cut and he said it’s “a very strong story”. Exciting!

It can only be 5 mins long so it’s really just a snapshot into both of your stories - I’m sorry it can’t be longer and more in-depth, it would be a great 1-hour doco! We’re looking at dividing it into 2 self-contained parts and running one on the show and directing people to the second one on the website.

Everyone who’d seen the rough cut so far has been very moved. Jon Casimir (who is our senior factual team advisor and was the head researcher on Enough Rope) said it’s something he’ll never forget. So there you go! Very inspiring. Everyone has so much admiration for you both!

So in other exciting news, Andrew is looking into the possibility of doing a live online forum after the show about Intersex, similar to the Refugees one we did last year:

Just wanted to float the idea with you guys and see whether you’d be interested in being on the forum on the Wednesday night immediately after the show goes to air? It would be AMAZING for the audience to be able to chat with you!
Who elected me spokesperson for Intersexed people? I mean, what right have I to talk about any situation other than my own?

I hope we can get others involved. My biology is so atypical, yet I'll be seen as "one of the faces of Intersex" rather than a statistical outlier. :( In 5 mins none of my disclaimers about that are likely to make it in.

At least Nat is standard Swyer syndrome. I'd really like some more representative IS people though.

From the remarks by Ali and other members of the production team, we did hit them where they lived though. Hopefully not so much as victims deserving sympathy, but those unjustly treated quietly but firmly doing what they can about the unnecessary legal and medical problems they face.

Maybe we'll get some more understanding in the general community. We could hardly get much less.

Anyway... watch this space.


Laserlight said...

Who elected me spokesperson for Intersexed people?

You did, by speaking. Even better, you know what you're talking about. You have significant professional accomplishments, and they're not related to TS/IS so it's clear you're not fishing for a grant. You're not obviously an addict, drunk, psychotic, or anything else that would impair your credibility. You're reasonable rather than hostile. So...who better?

Zoe Brain said...

Who better? Pretty much any Intersexed person with those qualifications. That's most of them.

I've identified a total of 24 people who share much the same syndrome as myself worldwide, with sub-clinical cases perhaps ten times that.

I'm such a statistical outlier, so completely unrepresentative, that to be seen as a representative of Intersexed people seems wrong.

The only thing I can say is that IS people in general keep a very low profile. It's safer.

Look at how Caster Semanya has been treated.

But someone has to put their head above the parapet. I have so many social advantages that I'd be guilty of shirking my duty, ducking my responsibility if I didn't do my share.

And my friend Nat put her head up too. I wasn't alone. And she's in her early 20's, facing some very difficult decisions of her own. Together we're far stronger than either of us alone.

I did consult with people at OII Australia before going ahead - they seemed right with it. I expect some valid, justified criticism though from many IS people that someone as anomalous as myself shouldn't be doing this, speaking for them.

God knows I don't want to hurt anyone. I'm bound to have though. I think I'll have done more good than harm, and hopefully as little harm as possible.

It would have been so much easier to let things slide. But I couldn't, you know? I believe in personal responsibility.

And no, I don't regret it, I'd do the same again. Someone has to, and if the more qualified people aren't in a position to, guess I have to do the best I can.

Anonymous said...

I have KS, but that's pretty mild by intersex standards. The people who have suffered the most are the ones who were butchered as children, medical rape of the most awful kind. Their stories need to be told.

Laserlight said...

The only thing I can say is that IS people in general keep a very low profile. It's safer.

That's why I started with "by speaking". I also suspect you don't give yourself enough credit n other areas, but the "speaking" part is the main one.

Incidentally, I've sent a couple of emails to what I now suspect is an obsolete address for you. Please drop me a line: laserlight (at) verizon (point) net

Mercedes said...

I hear this a lot too. The fact of the matter is that someone needs to speak, or someone who's not in the know but armed with misguided assumptions will do it for us.

That's not to say we should speak for everybody, but I think it's reasonable to educate ourselves as much as we can so we can speak to issues carefully, when the people affected are not present to speak for themselves -- to acknowledge that their viewpoint needs to be remembered and accounted for... and then we step aside when they arrive to speak for themselves. Or, better, know who's willing to speak out so we can point the questions to them.

kae said...

Hi Zoe
I think that more information needs to be out there. It's a pity that more stories can't be told so that some opinionated, judgemental people realise that this type of thing does happen to people and that there really is no control over it happening.
A longer story later might be good, about you? About someone else's situation... but the stories need to be told to make people more aware.

Angela said...

We at OII Australia know that far more information and especially personal stories need to be told, too.

We offer a place on the web for them - as text, audio, video or other forms of multimedia - and we can offer help of various kinds as best we can.

We are a well-funded media production company like Andrew Denton's but we do have the beginnings of something -

In fact, right now we are funded by one founding member who is retired and fighting a major court case against an abuser, and another founding member who is unemployed, and anyone who cares to donate.

If you are intersex and have a story to tell, please, get in touch -

You can tell your story completely anonymously. You can be from anywhere in the world. You do not have to go in front of a camera. You don't even have to write a single word.

Angela said...

Woops, I meant to write:

We are NOT a well-funded media production company like Andrew Denton's but we do have the beginnings of something -

Battybattybats said...

If we only allow the averages to speak and the averages to represent... well thats a big part of the core of the whole problem isn't it? Focus solely on the average and the huge numbers of people who are diverse are swept under that carpet erased from public eye and public understanding and so the next generation grow up in ignorance of their existence and the next generation of diversity grows up in bewilderment and shame and self-loathing for not being the average.

Every voice and every diverse experience is intrinsicly valuable and in many ways is far more valuable than that which merely adds repitition to the average.

And every diverse voice makes it easier for others to speak out.

Thats why often it is the far more different people who regularly pave the way for the only slightly different to get their due of exposure, acceptance and justice.

Angela said...

Battybattybats writes: "Every voice and every diverse experience is intrinsicly valuable..."

How true that is. OII Australia would love to tell every intersex person's story, no matter what their history. Everyone's story needs to be told. Everyone's.

shashank said...

Here is a link to more information about the genetics of Swyer Syndrome that was prepared by our genetic counselor and which has links to some useful resources for those dealing with this condition: There is also a phone number listed if you need to speak to a genetic counselor by phone. I hope it helps. Thanks, AccessDNA

Zoe Brain said...

While I usually delete commercial material, the previous comment is not spam, it's directly germane to the issue.

I may even avail myself of their services.