Saturday 15 July 2017

Damaging Fundraising Campaigns for Autism

This week, we have seen a large autism charity teaming up with a large supermarket.  They are putting a glass box in the supermarket.  They are asking people to sit in the box for 50 hours at a time. This will allegedly raise money and awareness for autism.

The article calls autism a "mental condition".  It is not.  It is a neurodiversity, part of the normal range of human brain designs.  It has strengths... as well as challenges in today's busy, noisy social world.   The article goes on to say that we have "great difficulty communicating and forming relationships with others".  Inaccurate and misleading.  Well, unless when you go to (say) China, you accuse them of having "great difficulty communicating and forming relationships with others".   Chinese cultures and languages are different.  Autistic culture and language is different.  We can form brilliant relationships with each other, and with people who take the time to learn our communication.

So, we're not doing well in writing this article in the newspapers so far.

Then, there is the subject.  Paraphrased, "I know, let's pretend autistic people are 'locked in their own world', and put people in a box for others to gawp at.  That should be marvellous, eh."

The photo at the top is a cage.  An autistic young person was kept in it.  It is one of endless pictures of cages where autistic children are kept.  Illegally.  Traumatically.  Appallingly.  Like animals.  By some non-autistic people.  The non-autistic people who are supposedly better than us, more empathetic than us, better communicators than us.

We are 'locked in' by some in society.  We are trapped, by some in society.  We are disadvantaged and othered by society.  We are often victims of injustice, imprisoned whilst innocent.  As a child, I was locked in to spaces for hour after hour.  Even now, I can barely cope with being in a room with the door closed.

A parent of an autistic child had the idea for this, we are told.  "Living with an autistic child is like living in a glass box", she said "...a perfect metaphor for the condition".  Well, no.  But it's a perfect metaphor for how appallingly misunderstood autistic children often are.  Whether verbal or not.  Whether of high IQ or not.  I couldn't speak for the first ten years of life and I sometimes still cannot. I know what it's like to feel trapped in a world that champions perfect non-autistic speech above all other things.  It was other people who 'caged' my ability to communicate with them.  I was desperate to be loved and accepted, but endured almost daily bullying and hate.  I didn't learn to hate back.  I did learn to be clear about this not being OK.

So many of my much loved, wonderful autistic friends nationally are horrified beyond measure at this stunt.  The charity has a history of using it as a money-raiser in various stores.  Each time, they are contacted by autistic people who plead with them not to do this. Yesterday, the charity representative claimed it had never had any complaints.  How extraordinary.

What is going on here?  The article describes living in a box as a 'unique, once-in-a-lifetime experience".  Good heavens.  Humiliating autistic people by misportraying us?  Really? Remind me who this is for?

The recent excellent but sobering Autistica report shows that autistic people die on average 16 years early.  Why? It's not a medical condition.  Well, after a lifetime of bullying, othering, mistreatment, defrauding and being unable to access basic services?  Not that surprising. If charities want to make a difference, they could start with tackling some of that.  Working with us, alongside us.

Do not engage with this sort of stunt, please.  Autistic people are not supporting it.  It is damaging, it is humiliating for us, and we do not need myths and nonsense in our lives any more.  So many autistic people consider suicide after that lifetime of hell.  Don't add to it.  

Be positive about autism.  Learn about our communication and our way of showing love and respect.  

Respect difference.

Many thanks.