Sunday, September 19, 2010

A lesson learned the ugly way...

I have a friend who is on a similar journey to ours. She also has an autistic child. She weathers the same poop-storm we do with grace and insight.

She is also autistic herself.

This past weekend, a seemingly innocuous online sharing (she posted an article on FB that many, many of our friends also posted) turned into a really ugly insight into what can happen if families do not accept what I am going to start calling the 'validity of difference'.

I apologise in advance to the people involved, for mining your life trauma for blog fodder. But I think this is crucially important. I won't name you or shame you. Even the people I would quite like to throttle (were I able to do a kind of horror movie reach-through-computer-screens-choking sort of deal... surely there's a Hollywood movie in that...)

Autism is, in many people, a disorder of stealth. You can look 'normal'. Sometimes, you can even act 'normal'. With effort, some autistic people can transform themselves into 'normal' for stretches of time. It goes without saying that that transformation comes at a cost. For the uninitiated, that cost is most clearly seen in children having what look like snotty tantrums in supermarket aisles/playgrounds/birthday parties. There comes a point where the effort of subverting every biological message into an alternate brain/body dimension is just too much.

Anyhoo, I digress.

Back to the ugly online incident.

My friend posted something her siblings thought was stupid. Not unusual. My siblings think I'm stupid all the time. And for the most part, they are right. But, the reaction of my friend's siblings was something I've never seen before.

Actually, I lie. I have seen it before. In the playground. Or maybe in playgrounds in movies, where systematic bullying becomes the kind of abuse that would be an arrest-able offense should it happen in real-life/adult-life.

It was nasty, coordinated, unpleasant undermining of another human being. The attacks, despite many attempts from friends of my friend to defend or defuse, went on in a self-righteous tone that clearly showed these siblings were used to this kind of activity.

And it got me thinking.

My friend was not diagnosed until she was in her 20s. She was institutionalised in attempts to handle her difference, but no-one was able to give that difference a name until she was an adult. It seems like, lacking a framework for that difference, her family refused to give it any real validity. So they seem to have got into the habit of demeaning her as a method of course.

Why? Because they could? Because she saw the world differently? Because she didn't behave like other siblings?  I don't know... I'm not them.  I can't imagine justifying that kind of behaviour in my life, but clearly, they could. And they still can.

I want to draw a line in the sand. I want to make posters and t-shirts and TV ads. I can't live in a world where this kind of behaviour is OK and not speak out... because my son is growing up in it. And he sticks out too. He's different as well. He doesn't know, and shouldn't know in my opinion, that he should hide that difference lest the more 'powerful' decide to call him out.

I'd like to hope I knew this before I witnessed my friend's treatment (which she is handling with integrity, compassion and grace). I know it now.

For what it's worth, I also learned that autistic young people, even without appropriate therapy and intervention can grow up to be incredible human beings. They can be passionate advocates, dedicated partners, intelligent parents, superb workers and the very, very best of friends. Not in spite of their disability, because of it. Different, not less (thanks again, Temple).

I know this because of my friend. I'm not going to name her, but I am going to thank her.

By email. Seriously, I get the whole privacy thing. And I hope Billy understands that when random strangers start talking to him about his poop.


Amy (DQ) said...

I join you in standing up and saying this kind of behaviour is not acceptable and I am so sorry to learn of such awful treatment and behaviour for your friend. I am doubly shocked that it came from her family. I just don't get that at all.
Thank you for getting others thinking about this.
I promise that if I ever get to meet Billy, I won't ask him about his poop. Ever.

Anonymous said...

me neither x

Ro said...

I'll give you an insight into the siblings thought-process ;)
They are continuing this behaviour as it's become their habit, they're comfortable in it and should they ever, even once acknowledge the validity of their sister's difference or diagnosis then they will have to acknowledge that not only is their treatment of her wrong but that they have something to be ashamed of.
Something they will fight tooth and claw to avoid admitting.
They justify their behaviour and treatment (probably) as "It's only XXX, she's my sister, we've always spoken to her like this, she's always tried to be different, she's always got an excuse, it's a family thing, mind your own business, if I want to speak to my sister like this I can, what do doctors know, she's always been a hypochondriac, there's nothing wrong she's just weird" etc.

Hartley said...

Just stumbled onto your blog through Caitlin Wray (welcome to nomral) and thought I'd say hi. I saw the Youtube clip of the song you wrote -- amazing!

Thank you!
Author of This is Gabriel Making Sense of School

Fi said...

Wow Ro!
Awesome Insight!

Val, that's terrible what that girl's siblings did to her but sadly it is happening everywhere.
Good on you for doing your bit to stand up and say that it is NOT ok.

Mama Deb said...

I was aware that something had gone awry, but only saw the aftermath of our friend's attempts to clean up the mess. (Wow, I was actually NOT on facebook for a couple of days!)
I am appalled to hear who the problem came from and hope that our friend knows how much her virtual community supports and admires her :)