I imagine that this may be a controversial blog post but I felt the need to write it.
I am an Autism self-advocate, writer, artist and public speaker. In the last few years I have ended up with a larger profile in the community than I expected. Lots of people read my books, blogs and articles and attend my talks. This means I am often put in the position of having to decide whether writing or speaking for an organisation is appropriate.
The Autism community is like any other community, with different opinions and beliefs and often a lot of robust debate. I too have a lot of opinions around what is good practice in providing service to Autistic people, what is inappropriate and what is downright abuse. Within our community there is a large number of organisations for support, education, early intervention, advocacy and activism. Some of these I align quite closely with and others I disagree with. Every sort of organisation asks me to speak and write for them.
This is a difficult activity and it often requires constant reassessing. Organisations can change their ethos and direction Some people in our community advise me not to write or speak for organisations whose Autism advocacy credentials do not align with their own and I am very temped to follow their advice and only speak or write for organisations which I have thoroughly vetted and had passed stringent criteria for organisations prior to accepting the invitation. However, this is not the course of action I always take. I do write and speak for some organisations whose ethos and values do not match up with my own, and here are some of the reasons:
- If I just spoke for the ‘perfect’ organisations I would not be speaking to many people. We live in quite a plural world and there are all sorts of organisations. I like the idea of my message getting to as many people as possible so if I only spoke for three organisations I would just be ‘preaching to the choir’ and not being of much value.
- If all the Autistic activists and advocates only spoke for those three hypothetical perfect organisations there would be no Autistic voices anywhere else in the world. I don’t see that as being a very good thing. I think the more Autistic voices in more places the better and we can represent our views with people who may not otherwise get to hear them.
- I spoke for an organisation last year which engages i some practices (i.e. ABA) which I strongly disagree with. I had mixed feelings about this talk but in the end I decided that the audience of predominantly parents of autistic kids, were far more important to speak for than the organisation booking the talk. I bet pretty much nobody in the audience was thinking ‘oh crap. Jeanette Purkis supports ABA’. They were in fact listening to what I, an Autistic self-advocate had to say and they benefitted from it. I tend to be more focussed on the audience of my writing and presentations than the organisation which gave me a platform to express it.
- Some people have said I can damage my reputation but writing for or speaking for an organisation which does some questionable things. Of course there is an element of truth there but really, anyone who knows me knows my stand on matters related to Autism and if anyone distanced themselves from me because I gave a talk for an organisation they don’t like, I’m actually not all that bothered. I am independent and I remain independent.
- I accept that there is a line. I constantly reevaluate any organisations I write or speak for more than once. I do not make a set decision so if they did hypothetically start endorsing bleach enemas or something I would drop them like a hot stone and probably write a bunch of blog posts about what everyone else should do so to.
- We have to remember that most people with a connection to Autism do not have a considered and specific view of what is and isn’t ‘kosher’ as advocates and activists like myself do. Most people are individuals on the spectrum or family members and partners of Autistic people who are just looking for information. These people won’t think ‘I’d better not look at that website because of its dubious credentials’, instead they probably think ‘ooh. Autism articles. Who is that Jeanette person?’ Then hopefully they will read my article and get some benefit from it. If I had boycotted that site because some of the things it posts are distasteful to me, and all the other advocates and activists had done so too, the reader looking for something useful about Autism would probably get some ableist perspective about how Autism is a ‘tragedy.’ I’d rather they read something by me or an advocate colleague!
I understand that there are many differing views in this space but this is just my take on the issue. May we all constantly question our motivations and actions – I know I do.