I am an autistic advocate of 16 years’ tenure. I have been talking and writing about autism, empowerment and respect for all that time. Like other advocates mine is an authentic voice of neurodiversity and power. However some organisations see me – and other autistic people – as the ‘colour and light’. By that I mean we are seen as sort of ‘tame’ autistics that organisations can draw on to advance their profile and be seen as inclusive. Such organisations want to co-opt us into being ‘tame’ and promoting their message. These days it is seen – even by problematic organisations – as a positive to have autistic voices. However if those voices are too bolshy, too loud, too proud then we are seen as a problem.
I struggle with some organisations. I have been asked to speak by a number of groups that I really don’t like. Usually I will decline the invitation but I have spoken for problematic groups on occasion. This is not because I want to promote those groups – far form it. It is because I want to reach the often significant audience that such groups might have. I am not speaking for the organisation but for the audience. It is a situation which involves a lot of soul searching and reflection.
Sometimes organisations are problematic without them even realising it. I gave a talk in a country town a few years ago and the local parent organisation was organising it. After I gave my talk the chair of the organisation asked me what I’m sure they thought we was ‘Dorothy Dixer’ question (ie easy to answer and quite obvious). The question was what I thought about the ‘militant activists’ in the autism community and people being overly ‘politically correct.’ I was a bit flummoxed but ended up saying that many of the militant activists were my friends and political correctness essentially means being respectful and inclusive – so not really a bad thing! Some organisations act like they are doing me a massive favour by asking me to speak. They are in fact not doing me a favour at all – or anyone else. A presentation primarily benefits the organisation it is delivered for. And in terms of myself, I have given over 40 presentations and podcasts this year so it’s not like I really need to do any more!
In terms of my own beliefs I think I am somewhere between militant activist and gentle persuader. I certainly don’t like to be the colour and light! Things have changed in this space since I first started out in advocacy way back in 2005. Back then an autistic speaker was ALWAYS the colour and light – well I was anyway. I cannot speak for other advocates around at the time but I imagine it was similar situation for them too. As time went on the colour and light issue changed in character. These days it is unusual to find an autism event without any autistic speakers or where autistic speakers are solely there for the purpose of some kind of ableist inspiration porn but there are definitely still issues in this space.
One thing which is an excellent development is the rise of autistic-run organisations. I have done work with many of these and it is almost always lovely. Having been the colour and light when I have a lot to say beyond inspiring stories from my life it is certainly nice to be valued for my opinions of various topics. I have written books and chapters in books on mental health, education, employment, resilience, gender diversity, self-empowerment for kids, advocacy and navigating life with autism. I am considered an expert in autism on the world stage so having an organisation ask me to speak for 15 minutes on my life story and making it inspirational is pretty irritating. It also demonstrates a lack of respect for me as an autistic person and expert.
Being the ‘colour and light’ is closely related to something the late great disability activist Stella Young called ‘inspiration porn.’ This relates to Disabled people being viewed as inspirational for simply existing. I get this one a lot. The ‘best’ was someone being very impressed that I took the bus. The worst part of that was that I take the bus to my middle management job in the public service. Surely if I was going to be ‘inspirational’ then the key thing would be the job not how I get there! I also get paternalism. I was at an event at Parliament House a few years ago and got talking to a senior manager from one of the big banks. We finished our discussion and this person started talking to my neurotypical companion. I heard the banker say ‘Ooh she’s very articulate…’ We are so often seen through a paternalistic and ableist lens. I don’t want to be an inspiration or the colour and light or a ‘tame autistic’. We are just as valid as any other people and we deserve respect, understanding and inclusion. Our voices and opinions need to be heard and understood.