Monday, 31 March 2014

Light it up blah

April is nearly upon us, and I'm finding it very hard to get excited about lighting things up blue for autism.

It's blue light, but not as we know it
In the first instance, there's no logical link between the autism spectrum and the colour blue.  Pink might be working well for breast cancer, but there are more causes than colours so if every campaign needs a colour scheme we're quickly going to end up double-booked.  Check out the list of causes using variations on the blue awareness ribbon.  It's long, covering issues from child safety and bullying to freedom of speech online.

I took to Twitter and Facebook to ask what cause was associated with the colour blue.  The answers included prostate cancer, ovarian cancer, and the national depression initiative BeyondBlue.  Autism was mentioned twice, but so was the police.  Other answers were aliens, Blue's Clues, and this response, which I think sums up the problem with trying to reduce complex issues to a logo or an awareness ribbon:

"So many ribbons, don't even notice them anymore... Could be Easter Bunny! Sorry, not a laughing matter I know, but everybody's wearing some colour."

This makes things tricky from a communications point of view.  First you have to explain to Mr Random Punter that the blue light is for autism, not depressed police officers with prostate cancer, and then you still have to deliver some meaningful autism awareness.

We need some community education about the fact that it's not a condition exclusive to childhood, and the need for more services and support for people on the spectrum of all ages and particularly in regional and rural areas.  We also need to encourage respect, dignity and inclusion for people on the spectrum.  Maybe we could have posters or an app that show you a 10X10 grid of a diverse mix of faces, and people have to pick the autistic one.  And when they pick the little blonde-haired kid or the geeky looking teenage boy, surprise bitch - it turns out they're ALL autistic.

At the moment, the site behind Light It Up Blue in Australia acknowledges it's a lifelong condition, but then in the same paragraph they say it "affects every aspect of a child’s life and the family around them."  They then go on to say "more children are diagnosed with autism than childhood AIDS, diabetes and cancer combined", as if those conditions are comparable, and as if adults aren't being diagnosed in our 20s, 30s, 40s and beyond.  Autism Awareness (the group behind Light It Up Blue in Australia) has a post school options page on their website, which lists absolutely no resources at all.  On their support page, 14 of the 16 options are specifically for parents and carers, with only Lifeline and Carelink potentially being helpful for individuals on the spectrum.

The other issue is that the association between blue and autism is not a home-grown initiative.  Like Oreos, it's an American import.  And like Oreos turned out to be just smaller, strangely gritty versions of our own Delta Cream, imported autism awareness campaigns may not be all they're cracked up to be either.

There's a US charity/lobby group called Autism Speaks.  To say they're divisive would be to put it gently.  I have never seen a charity that's disliked so violently by the very people it ostensibly represents.  Many people on the spectrum object to their portrayal of autism as a tragedy, and of autistic people as burdens who are but shells of people, who cause suffering to our families and ruin the lives of everyone around us.  There's no social model thinking going on here, no realisation that by painting autism as the enemy you're creating an impossible situation for children and adults for whom autism is a part of our brains and our bodies.  Diary of a Mom recounts the story of a young man who, told by a therapist that autism was "the bad guy" in his life, put a gun to his head - to kill the "bad guy".

It's an issue various disability lobby groups and charities are going to face (if they're not already) as awareness of the social model of disability grows and more disabled people advocate for themselves.  You can't campaign for respect and dignity, and say "we love and support you", and then say in the next breath "but we think your existence is a tragedy and you're a drain on resources and the world would be a better place without people like you in it."  There's some cognitive dissonance to be worked through there.

There's more to Autism Speaks, which I don't feel well enough versed in to discuss.  Click here for a beginner's guide to the issues, and a some links for more information.  Here is more, from the Autistic Self Advocacy Network.  Here is some more, this time from the parent of a child on the spectrum.  Here's more, from another parent.  Here's another.  Here are some other shenanigans.

From my point of view as an interested outsider I've often noticed a palpable division within the US autism community, those who support Autism Speaks versus those who don't.  Since we're all ultimately on the same team you have to wonder how that happened, and how much energy and emotion is spent on that antagonism which could be spent creating a better life for all people on the spectrum.

And you have to ask yourself whether that school of thought, with all the division that's come with it, is something we want to encourage here.

I don't think it is.  Call me an optimist, but I think we can do better.

But I worry that by adopting the American hyperbole about autism - "public health crisis!" - and the image of autism as something that affects broken, wretched children and their suffering families, we're going down the same route.  I'm concerned that's a very dangerous road.

And that's why I'm not excited about lighting things up blue.