Thread by @ekverstania

The irony of autistic representation in the autism professions is that...

...the people who are prepared to slot in as token autistics are presented as authoritative role models (whilst being out of touch with a broad range of other autists), while...

...the intersectional activists who stand up for human rights for all are said to be representing only themselves.

So guess what I do when I get asked to speak about my "personal journey with autism"?

I tell them up front that I don't do that topic.

I tell them that instead I'd like to
1. talk about common health problems experienced by autistic people and their non-autistic relatives, or
2. share the words of nonspeaking autistic people and talk about what they have said helps them communicate.

And now that my nonspeaking fellow activist Zekwande Mathenjwa is pursuing advocacy full time, it's also easier for me to propose that he be put on the programme.

This doesn't mean I think these are the "biggest issues". They are simply two of the areas where I think I know enough to make a difference.

https://twitter.com/ekverstania/status/1398150875881816064?s=19

Other focus areas for me and some of my fellow activists:

autisticstrategies.net/2021-autistic-…

Now, make no mistake, personal stories can be very powerful. But there are stories far more important than mine.

Snippets from my life, introduced contextually in a talk as an illustration of a pattern, are more helpful than the whole timeline.

There are enormous autistic rights issues that are not receiving adequate focus while the over-40 professionals and celebs are coming out as autistic.

The media are not balancing those stories with personal stories of unfamous, unpowerful people with high support needs.

As soon as it goes there, it's some celeb who is NOT autistic, who's speaking over actual autistic people and being praised for it on top of it.

The backlash to Sia's movie was a turning point; I'll get back to that later.

But first, here's the kind of issue that we need in the news and on conference agendas.

There are so many stories in between these lines that point to massive systemic problems.
communicationfirst.org/dear-parents-w…

The autistic participant is often there to provide some kind of entertainment, embellishment or endorsement to an autism-related event arranged by non-autistic people. (If they even think of including one.)

Sound familiar?

"It's an honour for me as a person with autism, to accept the nomination by eminent professionals and parents to serve on the board of/speak at [insert ableist organisation or event here] as a representative of autistic people and a role model for the community."

Babe. You don't represent me or any of my autistic friends. We didn't nominate you. I never mandated you to speak on my behalf.

Also, HONOUR? What honour? I've turned down this kind of nomination so many times! I don't accept the authority of the people making those nominations.

I served on the board of a disability-related board for a short time during its launch, in a capacity that I always regarded as temporary, and I serve on the board of a regional cross-disability organisation now.

I do not 'represent the autistic voice' there, although naturally some of the issues and perspectives I bring to the table relate to underserved and underrepresented autistic people and their caregivers.

In all of this, I think one of the single biggest problems in the lives of autistic people in my region is poverty. But this is true of other disabled people too anyway.

There is a terrible shortage of school placement opportunities for autistic children in my country. The waiting lists for existing schools are very long.

But we can't just get the government to create more of what we have now. We need to do better.

Otherwise we're likely to get more of this:

https://twitter.com/ekverstania/status/1398306361172283401?s=19