Monday, 31 July 2017

"But The Other Autistic Person Copes Just Fine"

Many autistic and disabled people get this.  A lot.  "Well, Mrs Bloggins is autistic, and she copes just fine, so we don't need to do anything more for you."  "We have a wheelchair user who can access the room and doesn't mind not having access to anything else.  Why can't you be reasonable like him?"  "One of our autistic people is perfectly able to do task X, so you are just making a fuss over nothing.  You could do task X if you really wanted to."

Some examples of the barriers we face.  The idea that all disabled people are pretty much identical.  The idea that we all wake up with the same level of ability/disability, and simply have a bad attitude to coping.

It's extraordinary. 

I'm not OK with being excluded for no good reason. I don't think it's fair or appropriate.

My form of autism is not the same as everyone else's form of autism, for example.  I have a visual form that is heavily triggered by sudden anger from others.  And by flickering lighting and intense stripy patterns.  Such things can put me straight into brain shutdown, leaving me vulnerable and in immense pain.  It's not a personal choice by me.  No, 'getting a better attitude' doesn't help.

I am also faceblind, so identifying who is a 'problem character' in a room is very difficult.  The picture at the top shows my experience of seeing a group of people.  "Just avoid the difficult ones" is, I'm sure, a fun thing for people to say.  But it's like asking a Blind person to just avoid going through the red door.  I have been excluded from Synod for the last two years because of this particular scenario, so it's a personal experience. And a painful one.

If I'm asking for an adaptation, I know that it's a reasonable one, because I'm an expert in reasonable adaptations.  Nationally.  I know the cost, I know how to get funding for it.  I know the timescales involved.  It's not to get attention.  It's not to 'cause trouble' or to be more important than other people.  I work with people.  I help them find funding or contractors.  I make it possible.  But people have to want that conversation.   Interestingly, most don't.  So, it's not about funding, or time.  It's about fear, perhaps.

Having a 'tame disabled person' who doesn't mind being treated like a third class citizen?  That's not OK.  It's not OK to use anyone in that way.  It's not OK to think in those terms, either.  That's just lazy.  It allows people to continue to learn nothing and continue to be afraid of difference, I think.

For me to get to an event, I already take responsibility for...
Checking the plans.
Checking the online information.

Checking the route.
Checking and organising my transport that matches my disability needs.
Preparing myself days in advance with enough rest.
Setting aside days afterwards to recover.
Ensuring family have sufficient stuff to be able to cope during my absence (they have disabilities also, not just autism).
Preparing myself for conversation gambits.  This takes huge time when autistic.

Putting myself through sensory hell to look exactly right.

When at an event, I'm doing people the courtesy of using their language, not mine.  I'm using words, not pictures/text to speak.  I'm using their preferred body language and face expressions, to help them.  I'm using their forms of social greeting and farewell, not mine.

And it's dispiriting beyond words when I am met with, "Why should we have changed out that flickering bulb like you requested three months ago?  John can cope.  Why can't you?  We don't have a load of money, you know.  And we're busy.  Why can't you just do some coping yourself, instead of asking others to do it all, eh?"   

Watch out for places that treat reasonable, timely requests with that kind of dismissal. Whether it's accidental, from a place of ignorance, or otherwise.

Autistic people already push ourselves to our very limits to get there and be there for you. Bearing friendship, fellowship, skills.  Bringing potential ideas, inspiration, funding.  Bringing love.

We are not some budget item or bad attitude, waiting to happen to you.  We are your friends, and we would like to join in too.

Thank you for listening.