Monday, 18 November 2013

A seat at the table

"To have a seat at the table" means to have your opinions heard and respected in a debate or discussion.  But it may be an unfortunate turn of phrase, because it brings to mind an actual physical table.  Tables can only have so much perimeter, due to the laws of physics and interior design, so there's only ever room for a finite, limited number of people to sit around them.

especially when the first ones in spread out and cover the whole damn surface with jigsaw pieces
This creates a fallacy of scarcity; that there are only so many chairs to go around, and if someone else gets one, there may not be one left for you.  It's a classic divide and conquer move, because it sets all the stakeholders at each others' throats fighting over imaginary chairs, playing games of My Lived Experience Trumps Your Lived Experience, to the extent that we all forget about the common enemy we'd actually gathered around the table to discuss.

This, I think, happens sometimes in the autism community - by which I mean not just autistic people, but families of autistic people, therapists, teachers, and whoever else has a horse in the race.

Parents with a severely autistic infant and a complete absence of useful services see an independent, successful autistic 40 year old speaking eloquently about their life, and are heartbroken that this person might get a seat at the table while their own cries for a future for their child go unheard.

Autistic adults living with homelessness, unemployment, abuse, and a complete absence of useful services see non-autistic parents complaining about getting funny looks in the supermarket and are heartbroken to think that gets attention at the expense of their own utter despair.

In that situation, all to often the discussion degenerates into one side or both trying to discredit the other. And in between all the shouting and flinging of insults, the "you're not like my child!" and the tears and exhaustion and frustration on both sides, the actual point takes up its hat and cane and strolls out the door never to be seen again.

Rather than focusing on the differences between us, we should be looking at the similarities.  Go back and re-read those two apparently opposing points of view.  What are the common themes in both?

A complete absence of useful services is one.  Heartbreak is another.

When we realise what we have in common, perhaps we will stop fighting.  When we realise that what helps today's autistic children will help tomorrow's autistic adults, and what helps today's autistic adults will help the adults today's children will grow into, maybe we'll be ready to start actually building that help.

But first, let's build a small bonfire and burn this idea that there's only room in the discussion for one way to do autism, for one kind of autistic person, and for a select few voices to be heard.  Let's set ablaze this idea that others struggles and lived experiences matter less than our own, and reduce it to ashes to be blown away in the winds of change.

Let's build that bonfire out of the imaginary table.  So we never again fight for imaginary seats around it.