Thursday, May 19, 2011

You know...

Over the last month or so, I've been annoyingly present in the media in Australia.

It's a price we have to pay to get the book out and about, but in the process I seem to have attracted one lone, angry hater. Because I haven't got enough to handle.

I got hate email, following one radio interview. This blog has been repeatedly defaced. And all because...

Who knows? The only thing that has been communicated to me, by the bravely anonymous emailer is that I say 'you know' too often when being interviewed.

The overwhelming feedback from the book has been amazing. Really positive. And given that it is the collective work of many, many women, I couldn't be prouder. We thought we had something to say, and we said it. We set out to achieve something that hadn't been done before, and we did it. We found incredible support and resource within our number, and wanted to share that with others.

We've heard wonderful stories since it was released. Healing in families, connections made between neighbours, children respected rather than vilified for their difference. The diversity of stories in the book has collected and presented a diverse vision of autism and its impacts. This, in itself has meant we've managed to connect with a wide range of people.

All lovely stuff.

And alongside this loveliness, I'm accepting that if you hang yourself out there, you are going to get whacked.

But really... If people are more worried about my vocal repetitiveness than the fact that increasing numbers of children, every day, around the world, are being diagnosed with a lifelong disability... then I've also got to accept that those same people are well and truly detached from any kind of compassionate, active collective, hope for the future.  And that they should, perhaps, get a life.

I hereby apologise for being repetitive. It is something I live with every day, given that my son holds the transcripts from endless Attenborough documentaries and Thomas episodes in the very front of his brain. I am also not a radio presenter. But, whatever, sorry for saying, 'you know', you know?

However, I will never apologise for trying to raise awareness, make change and fight for Billy and those like him.

He didn't ask for this disorder, nor did we. I do not want more families to have to deal with autism, if it's preventable. And I believe it is preventable. At the very least, I think we should find out as much as we possibly can, as reliably and as quickly as we can. I think we should stop passively harming, start actively listening and get on with fixing what's fixable. I think we should live autism awareness through real respect, legislative and societal change.

And if I get abused while pursuing those things... It's nothing compared to the snide comments, pitying looks and ignorant judgement my son faces each and every day. From passers by, from peers, from professional adults who should know better.

Just as I have the privilege of journeying beside some brilliant folk, professionally and personally, so should Billy. If I can do anything to clear the road of unthinking detritus for him, I will.

He is different. He is not less. Having a hand to hold on this journey is not a weakness, it's a gift (for both of us).

This is not about me, and it's not just about Billy. It's about all of us. If you, like the hater emailer/defacer have the 'good' fortune to live in a world untouched by preventable, chronic disease then I would suggest you should be more (not less) inclined to listen to the message rather than take pot shots at the messenger.

Or not. You know...

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