Why I don't want to be part of the 'autistic activism' scene
Why I don't want to be part of the 'autistic activism' scene
For the context of this article, please see this accompanying post.
Disclaimer (that really shouldn't be necessary, but evidently is):
Although I have been involved in Autscape for a long time, Autscape has absolutely nothing whatsoever to do with this blog. I am neither a board member nor an employee of Autscape's (Autscape has no employees); I am just a volunteer. This is my blog, not Autscape's. The opinions in it are mine, not Autscape's.
I have heard about Autistic Pride Day events (usually picnics) for a few years. The ones I heard about were far enough away to mean I would have to put in a lot of time, effort and money to get there. Then there's the unfamiliarity of the location and activities and the unpredictability of British weather. Being stuck outside in the rain in a city far from home is not my cup of tea.
To my mind, 'pride' is something you feel about accomplishments, or vicariously about a loved one's accomplishments. Autism isn't an accomplishment. I know people use it to mean 'not ashamed', but although I know it, some part of me doesn't seem to be able to accept that it doesn't always mean what I think it means. This is almost certainly some kind of failing on my part to get my excessively logical literal alexithymic mind around this.
Despite these and a few other issues, I went to an autistic pride event recently because it was at a familiar location and I was curious. Once there, I felt more like an ethnographer than a genuine part of the group. It helped me to solidify something that I've felt for a long time, but have had difficulty putting into words. That is, why I don't care for autistic activist events. By that, I mean this sort of event, not actual activists or activism, their missions, their valuable changes. They are separate from these events (although they might attend them, if they can find the time).
So here's what I learned about why I don't want to belong to this kind of group:
I actually expected it to be annoyingly 'autism is a wonderful gift' positive. In fact, I found the stories to be negative ones about how hard their lives are and all the terrible things that have happened to them because they are autistic. Surprisingly, there was nothing about how great they are. Nor was there anything about how people helped them, how they got through it and recovered, the things they do now... just sad stories about bad events.
They're angry. See above.
This is a broad one that I've seen from virtually all activists. They're adversarial. This may seem like a repeat of the previous point, but I mean they're all about fighting, not about trying to work with others (including the enemy) to make positive changes. It's mostly the system they're angry with and the system is very resistant to change. The people who are the cogs in the system are mostly good. More practical on-the-ground change will happen faster by getting those people to understand and be allied with us, rather than automatically fighting.
This hostility doesn't just apply to the people who may be responsible for making things hard for them, it even applies to other autistic people who don't do activism like they do. The 'if you're not with us you're against us' mentality.
I realise that being negative, angry and adversarial are legitimate reactions to real events in these people's lives. I know it's hard. I just don't really need to immerse myself in other people's anger, even for an afternoon, let alone as part of any ongoing activist movement.
External locus of control (helplessness)
They place the power to improve their lives outside themselves. They seem to believe that only someone else waving a magic wand (e.g. providing support, money, services, whatever) will make things better. This means that they are helpless to make their lives better as long as the external force (e.g. the system, the school, the in-laws, the NHS) doesn't do what they should do. Anything that puts all the blame (or credit) in one place is bound to be wrong - things are just not that clear cut. And putting all our hope in an external force leaves us powerless to make progress without them.
Paranoia (not quite, but chip on shoulder at least)
They act like everything is due to (deliberate or preventable) mistreatment, e.g. discrimination. Just because you're part of a minority group (including disabled) doesn't mean that every negative thing that happens to you is due to unfair discrimination.
The calls to action are often empty. They say, "this has got to stop... we're going to stand up and do something about it!" but what they seem to mean is we're going to shout about it in a park once a year, or make some YouTube videos. They rarely offer a concrete plan of action and ways that other people can contribute. I'd rather have one person running a genuine autistic space drop-in once a fortnight than 50 (or 500) people shouting in a park.
There are also traits that are common in the prominent people in these things, but this is not as much part of the scene itself, more of a separate but related irritant. Some of the genuine active productive activists I know may see themselves as community leaders, but for the most part they're too busy to be this type.
Some of them want to be treated as very special. They are special. Everyone is special. Sometimes certain people start thinking they are more special than anyone else. They don't consider that any needs might be more important than theirs.
Putting it on
Some of them want to be seen as the quintessential example of an autistic person, to the point of putting on, exaggerating, or drawing undue attention to characteristics that support their autism identification. They don't seem to have much in the way of other traits at all, let alone ones that would appear to contradict it. Autistic people are complicated. I don't know any genuine ones who don't have at least a few things that make you wonder, 'How can an autistic person do that?'
I'm not saying that the people who do this aren't autistic. It's really hard to tell what may lie under the affectations. Sometimes it's a non-autistic person (rarely a fully neurotypical person in the strictest sense) who believes they are autistic, or wishes that they were so ardently that they at least partly forget they're pretending. Sometimes it's an actually autistic person underneath and they just don't feel confident enough in their imperfect expression of autism to just be themselves. (This is most common in the recently diagnosed, including ones who aren't trying to be any kind of leader.)
They think they know things they don't. Autistic adults who think they know everything about every kind of autistic because they are autistic. Even if they know about autistic children because they were autistic children (and may be parents of them), that doesn't give them knowledge of the needs and interests of non-speaking autistic adults in residential care. I'm not saying we don't have something important to contribute there - I have a job doing just that* - but I think it's wrong to push out the people closest to them, usually their parents.
There are also personal reasons not to subject myself to one of these again.
I have an aversion to groups of humans and I don't like meeting and talking to strangers. These events are kind of made for that.
I find talks - especially 'my story' talks - really boring.
These things are havens for terrible art, especially performance arts. I end up wanting to avoid any positive disability event that may include any art form because I can't bear to be subjected to horrible music. (Horrible poetry is bad too, but I'm impervious to horrible art, having zero artistic sense.) That doesn't mean they're all horrible, but some are, and you wouldn't be able to tell the difference from the audience's reaction. If a performance is only appreciated because the performer is disabled, that's patronising.
I also don't go because I don't especially enjoy being outside. I don't like being so vulnerable to the unpredictability and uncontrollability of the weather. I'm surprised this doesn't seem to be a common feeling for autistics at all, many of whom love being outside much more than inside (where things are safe, predictable and controllable).
So, I went to an autistic pride event. I learned something. Mostly, I learned something about myself and the reasons I don't like these things. I don't have any particular need to go to another one. I'm not saying I will never go again.* I'm saying that if I do go again, it will be for some other reason than that I want to be part of it.
*After what happened, I'm clearly not going to that event again.