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12:04am January 29, 2012

*sigh*

tmorrow459:

Because apparently I have to clarify myself lest I piss people off, I’m not trying to do any “victim-blaming” or shame anybody, I’m just saying that those of us who CAN go out there and try to change people’s perceptions should and not just spend all their time whining about how much it sucks that non-autistics look down on us. The first step to change is, if at all possible, going out there and DOING SOMETHING ABOUT IT.

My question is, is there any reason to believe people are not doing that already?  This isn’t the first time I’ve seen someone say something like that about some group of people. But in no instance have I ever seen much evidence that people who are complaining on the Internet aren’t also doing other things, both on and offline.  I don’t feel insulted or anything, I’m just not certain that this complaining without action thing is actually happening. 

I mean, I complain on tumblr about stuff sometimes because tumblr is where I go when I’m not having to be “on” all the time.

Off of tumblr I have:

  • Given presentations to parents, professionals, autistic people, and mixed groups, on all kinds of topics.
  • Contributed to and maintained one of the relatively earlier web resources by and for autistic people
  • Blogged about all kinds of topics, on a blog that’s fairly well known among blogs of autistic people.
  • Made a bunch of videos, including several that juxtaposed my appearance with my words.  One of which went viral and has since appeared at conferences and in classrooms and lots of other places I’m probably not even aware of. (To the point that people have recognized me on the street, which is creepy.)
  • Consented (despite extreme hatred of the thought of it) to appear on USA and Canadian news shows (and been virtually in UK news as well), as well as magazines, to attempt to get the word out on some of this stuff. To say they got things way wrong and different than I wanted would be an understatement, but at minimum the idea got out that people who look like me can actually understand things. This put me at a fair amount of risk, so it was not fun and came at a cost (death threats and stalking, both online and offline).
  • Gone into institutions with patient advocacy groups to keep an eye on the staff.
  • Generally shown people by living around them and interacting with them that their stereotypes about someone who looks like me are utterly wrong.
  • Provided training for staff and teachers who work with people with developmental disabilities.
  • Have had writing about these things published within books and other places.
  • Done repeated web chats for a professor’s autism class.

And that’s just off the top of my head.  The point being, anyone who is griping on tumblr could just as well be doing zillions of things elsewhere that you’re not aware of, just as I am.  But I’ve noticed that a lot of people – you’re not the first or I wouldn’t have said anything – seem to think that if they see someone griping on the net then they need to be encouraged to do more. Which is sort of like saying if a woman goes home and gripes to her girlfriend about something then she’s not likely doing anything to change it.

Anyway I’m not really offended, especially since I’m already aware how much stuff I do on a regular basis. (Enough that it endangers my health and if anything I need to be encouraged to back off at times.) I’m just puzzled by this latest appearance of this idea.  I tend to assume the opposite – that people who gripe online have full lives both online and offline where they are likely doing lots of important things I’m unaware of, to the best of their ability.

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