I attended an exhibition yesterday which was called ‘Activism’. I was actually included in it as part of a photo installation caked ‘Redefining Leadership’ which featured six community leaders who are part of the Canberra Disabled community. The other exhibits were taken from a number of political campaigns in the ACT. The Aboriginal Tent Embassy was there and the protests against the arms industry expos in the late 1980s-early 1990s. There were lots of campaigns for gender equity and against war. A journalist was recording people’s stories and asked me to talk about autism advocacy. She remarked on how passionate I was and I guess I am passionate.
I know a bit about activism. In 1989, as the Berlin wall came down and people in former communist countries overthrow their Soviet oppressors, I decided to be a socialist. I was not the sort of socialist who looked to Russia. I was a Trotskyist. We figured that communism had never really happened and what was going on in Russia, China and Eastern Europe was a sort of state sponsored capitalism with a focus on military expansion rather than selling commodities. We were pretty passionate about our views. I went to every protest you could think of. The funny thing was that I actually wasn’t a socialist – not deep down anyway. My membership of the International Socialists was based in a need for belonging and acceptance rather than any need to overthrow capitalism. I enjoyed protests because they were the only place I could articulate and express my emotions but the ideas of revolutionary socialism for me were just a means to connect with other human beings. Unlike at school where bullies hated me whatever I did and could never ‘get it right’, the socialists accepted me if agreed with their views. It was easy.
Because I wasn’t actually a socialist I didn’t stick around for too long and got involved in other ‘cultures’ as I got older. I thought activism was a bit silly and likely to lead to legal problems and antagonising others. I let it go for several years and didn’t really miss it.
In 2012 this changed. I met a young autistic man who was completely disabled by others’ low expectations of him. He had left school very young and never reengaged with education. When I told him I was an autistic public servant who had written (at that stage) one book, he told me I was lying. And in his world I understand that it wasn’t possible to be those things. I felt like this man had been done over by a world that assumed he would be unable to do much due to his autism. I realised there must be more than one person in this predicament and I decided I needed to do something to give autistic young people confidence and pride in themselves to counter this issue. Within a year I had written a new book aimed at autistic teens and given a TEDx talk. I became driven and engaged and wanted to make a difference.
I always called myself an advocate rather than an activist. Activism – as I saw it – was hard line and shouty and while a necessary thing, was not a thing which I did. As time want on I found that line between advocacy and activism in my work blurring. Some of the people I respect highly fit into that activist category. I have done things in recent years which are clearly activism. I am definitely not a socialist but I think there is a strong activism element to my work.
We need advocates and we need activists. As I see it advocates influence decision makers and support change and activists highlight areas which need to change and put pressure on those in authority to make that change. These are both essential functions. I firmly believe that we need to continue with our efforts to change things for the better around autism. This stuff is not static. It is not the case that we can stand back and hope things improve. Everything is up for grabs in this space all the time. We need to continue to work to make change or those who want damaging things – the anti vaxers, proponents of ‘therapies’ that are harmful, ableists and eugenicists – will be empowered and things will get much worse for us.
I was with a friend last night at the Activism show who is one of three generations of activists. Many of her activist ‘aunties’ were there. It was wonderful to see the exhibition through the lens of their perspectives. I wondered if that would be me in 30 years, reflecting on the difference I have made alongside my autistic advocate and activist colleagues. That would make me very happy.