This is a post about activism and advocacy and working to make the world a more inclusive and respectful place for autistic people and anyone who faces discrimination and prejudice. This is A Big Job and thankfully lots of people are doing it. Many people making a big difference are best described as activists. They call out injustice and make a public stand to make a difference. They are vitally important and I have endless respect for this means of bringing about change. However this is not really ‘me.’ I approach the issue from a different viewpoint. Anyone working in this space needs to have a form of advocacy which reflects their personal style and strengths. I am not an exception to this, and my way of trying to make the world a better place involves being more of an “educator” than an activist.
There is something of an irony that I choose to come from the angle of ‘educator.’ “I shouldn’t have to educate people”… is a phrase which I hear a lot from fellow autism and disability advocates and activists, referring to the perceived need to teach people lacking knowledge about our experience and address their ignorance. As a sentiment, this is absolutely right and understandable, but I find it impossible to actually implement this as a strategy in my own life. A lot of my work involves ‘preaching to the choir’ – that is talking about autism with people who share my views or have a similar view. However, quite a bit of my work is with people who, for a variety of reasons, have a very limited understanding of autism.
Today I was talking to someone I know peripherally who was talking about a friend of theirs who has an adult autistic daughter. ‘She has no empathy at all…’ the person said to my slightly horrified face. I felt in this situation – as in many, many other similar ones – that if I didn’t say something then that person would be unaware that it is very rare for autistic people to genuinely lack empathy. Putting on my ‘I’m going to be patient and explain this’ “hat” meant that I got a chance to talk about some of the misconceptions around autism and empathy with this person. It was a hard thing to do to hide my impatience and frustration but (hopefully) my bit of education was a positive thing which might change this person’s views.
I have similar conversations every week. I am told I have a reputation for being very patient in my interactions with people who don’t know much about autism and / or who hold views which are strongly contrary to my own. I am actually not patient in my thinking at all. I find ignorance extremely frustrating and at times very hurtful. Where I exercise patience is in my delivery. I am quite good at hiding how bothered I am in the interest of not ‘losing’ someone who I think actually needs the benefit of an autistic viewpoint – or several. To my mind, the people with the most influence on autistic people – such as parents, educators, clinicians or employers – need to understand the sorts of things which might be self-evident to many autistic people but not to everyone. I take the view that we are all on a different journey and we are all at different points on our respective journeys. Others do not share my views or experience so I tend to think giving them a hard time for simple ignorance is likely to be counter-productive as how can I expect them to see things from the perspective of MY journey without explaining it to them?
I have had experiences in the past where I have come in hard with some people and instead of seeing it as a helpful discussion to support them to interact and understand autistic experience better, they have actually viewed it as an attack. Not only did that mean I ‘lost’ those individuals in terms of my work but I imagine it might have put them off listening to other autistic people as well. I do seem to be very good at explaining concepts to people that they haven’t come across before. I always joke that I would make a very good politician with such a skill! I spent many years of my life living among people who were more than capable of physical violence in response to any kind of dissenting acts or views so after that, being ‘diplomatic’ usually comes fairly naturally for me.
I think some people in the community might think I am a bit ‘soft.’ I don’t think I am. I am comfortable with my autism world ‘politics’ and feel that my work benefits other autistic people and hopefully the wider world through doing so. I am reasonably confident that my actual message is perfectly good and reflects my passion for change and the need to make a better world. However, I am not someone you are likely to find metaphorically ‘storming the barricades.’ There is a reason for this. I have a theory about the approach of activism and the approach of influence. Both of these are essential elements of conveying a message to my mind and often the message conveyed is very similar. However, influence and activism form two complementary but very different approaches. Activism in its purest sense involves delivering a message, stating a position, usually in a way which challenges the status quo and which is about getting message out to the world that things need changing. To be clear, the world needs activists, and activism is central for meaningful change. I do a little bit of that but I also do what I see as influencing, which better reflects my personality and skill set. Influencing is more about, well, educating people, I suppose. In my experience, it involves a lot of patience and listening to viewpoints which are quite upsetting at times. It is not for everyone. I often feel like I am a lightning rod for ignorance about autism with people wanting my opinion on something which is highly problematic and which I have to address. I have to very consciously put aside my anger and frustration while speaking to the person in order to drive a message which will hopefully result in them seeing things differently and altering their view.
Of course there is a line with this at which influencing needs to give way to activism and holding people to account. For me that line is usually where ignorance moves into hostility and / or ableism. And being aware of when it is necessary to take someone to task rather than explain things to them is always tricky. It is one of those ‘rule of thumb’ things which always get me a bit perplexed.
So I guess I sit in an odd space with this approach to advocacy. It is very stressful a lot of the time and I often wish I did things differently but I also think my approach has hopefully brought some people into a more positive and helpful view of autism. I really wish I didn’t have to educate people but I think I sort of picked that as my approach. The really lovely thing – and this occurs maybe more often than you might think – is when people come around to the sorts of views I promote and thank me – and others presumably – for putting them on a different path which results in them being more inclusive, respectful and helpful to the autistic people in their life and to all of us.