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. 




Tuesday, 25 July 2017

Ethics and Autism Access to Historic Sites

Over the last few years, I have worked with excellent charities and organisations. Lots have been places that are historic. They want to get more visitors, and they want autistic visitors to feel welcomed. Excellent.
Unfortunately, some have not understood autism. And, quite accidentally, I am sure, have linked to anti-autism groups and materials. Ones that portray us as tragedies, incompetent, a disaster for families. Ones that promote 'cures' and wish to see autism eradicated.
It is similar to Trustees saying, 'How can we attract more LGBT people?' - and then linking to gay-cure groups. Or to groups portraying being gay, bi or Trans as a tragedy for those around them.
Autism is not an illness. We are not a tragedy.  It is not a 'low IQ'. We are a neurodiversity. We have a different communication system, a different way of socialising and encountering the world.
When I am asked to work with people who see me as a tragedy, that is not a respectful starting point.
I ask organisations to work collaboratively. Responsibly. Respectfully.
If your organisation would like two million more fabulous, wonderful autistic visitors, experts, colleagues and friends, get in touch.
If your organisation wants to link to 'anti-autism' groups, I cannot provide you with access services. In the same way, you will probably not get Black and Minority Ethnic advisers to work with you if you see being Black as tragic. Nor will you probably get LGBT advisers to work with you if you ask them to work with gay-cure groups as co-workers.
Good diversity inclusion starts with respecting one another.
If you are being asked to ignore autistic advisers, and instead work only with parents who major on, "Look how I have suffered", that is a huge 'red flag'. Think very carefully about the message you are giving. You want to have articles by actual autistic people. Advice from actual autistic people. Leadership and projects by actual autistic people. Two million of us means there is a wealth of talent out here.
Thank you for listening.


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.