Wednesday, July 21, 2010

I surprised myself today...

The 'integration of children with disabilities' controversy continues here in Australia.

Today, it appeared in a number of media formats, including on ABC radio in Queensland (one station in our national broadcaster's network). If you click on the link above, you can listen to the interview.

In response to what felt like an unusually aggressive tone from a journalist I thought was quite smart and fair, I wrote this:


In response to this conversation, I would say... life is a challenge.
Being a teacher (as I am, OK, I was a teacher... young, needed the money, you know what it's like) is hard, on a minute by minute basis.
Being a parent of a child with a child with a disability (as I am) sucks too.
Wouldn't it be lovely if all of our lives could be lived with no challenge in them?
Poor children with no educational, medical or behavioral worries (I have not met many of those, BTW). They should be able to live their lives without ever meeting anyone different to them, shouldn't they? They shouldn't have to learn about difference or disability? Why taint their perfect lives with something inconvenient and confronting? Who knows, they might actually learn some empathy or life skills.
I hardly have to add that I'm being sarcastic do I?
Before my son was diagnosed with autism, I was afraid of disability too. Who isn't? But it happens. Like illness and death and elections.
Tolerance is a bitter pill for almost all of us to swallow. Only some of us have a choice about it.
The journalist was talking to the (quite astonishing) mother behind a rapidly growing protest movement and the head of a state teachers union. I was responding, mostly to her unstated (but clearly implied) agreement with the idea that 'normal' students have resources that are naturally owed to them, taken away by their peers with disabilities. 
Instead of teasing apart what life was actually like in an integrated classroom (something along the lines of what I expected of the journo in question), it felt like she wanted to force the mother of a child who had been integrated well, to... change her mind about the benefits of inclusion/integration. That wasn't going to happen, so she played the interrupting cow game (not that I'm calling her a cow... I'm not... but she did interrupt... a lot).
The surprise, though, came in the clarity in my mind as I composed a reply.
I hadn't really thought about it before, but in most people's lives, tolerance is a choice.
When you have to face some kind of adversity - chronic medical condition, disability, financial threat... you lose the right to choose. Add that threat being aimed squarely at your child and most folk don't even pause to consider. 
I can't be sure, but I think that's why the whole 'those children shouldn't be upsetting my child's natural trajectory through life' thing got so many of us instantly riled. Certainly, it's the thing that is sticking with me.
At the same time as all of this is going on, we (as a family) are dealing with challenging stuff at school. Really challenging stuff, that I'm still not sure we can get through. 
I'm finding it very hard to accept that people don't see Billy's condition as really good reasoning for accommodating his needs. I get that it's inconvenient, and there aren't enough hours and it requires more flexibility than usual but... it's real. And wanting it not to be, or not having enough time to understand or act on it... won't make it any more real.
We don't have a choice to be tolerant of autism. Why is it people who don't live with autism (or any disability) on a daily basis think they have a choice...? 
There is no mythical place for SN kids to go for a 'suitable' education. There are a series of largely unsuitable choices, and we as parents seek the most suitable one - by reading, and interviewing, and visiting, and researching, and talking, and questioning, and comparing and rejecting, and hoping, and trusting. 
No-one wants to send their child into an unsuitable environment, for school or for any other activity. Least of all, a parent who has spent a couple of years, dragging their already struggling child to therapy sessions, early intervention, social skills groups, doctor's appointments, specialists, screenings, assessments... in the dwindling hope that things might get a bit more 'normal'.
As a parent of one of 'those children', I can reliably report that it's very hard to trust. It's very hard to accept. But it's not very hard to be tolerant. 
That comes easy when you meet the eyes of other parents in waiting rooms. It comes even easier when you see other kids in therapy doing their absolute best to master something that didn't even blip on the radar of their 'normal' sibling. It stops being an issue when you see the light switch on in the eyes of your pre-schooler as they hit some obscure milestone the twelve month old next door thinks is a game for babies.
Suck it up, 'normal' folk. Take a real (or a virtual, if you must) walk on the road less travelled - tolerance-wise. Things like empathy and sympathy and understanding. They're life abilities, renewable resources (eco-friendly) and they're things the world needs a lot more of anyway.
You'd be doing us all a favour. And you might surprise yourself into the bargain.

4 comments:

carriemumof2withasd said...

I am standing in my kitchen applauding!!! well said my friend, well said :)

Katie said...

Perfect!

Ro said...

Good on you, perfect :)

Fi said...

I love you Val!
Always spot on!