as small as a world and as large as alone

1:05pm November 1, 2013

madeofpatterns:

youneedacat:

“You don’t need this junk. You need a cat.”: thegreenanole: madeofpatterns: warlocksexalways: Disability “allies”…

thegreenanole:

thegreenanole:

madeofpatterns:

warlocksexalways:

Disability “allies” who care more what authority figures say about us than what we say for ourselves (ie anti self-diagnosers)

Disability “allies” who think our peer support is disastrously preventing us from “getting the help we…

I love that tag.

And a thousand time *nodnodnod* - I seriously want to do an anthology of these stories. Know your rights stuff too.

I’m actually currently at our RI statewide self advocacy conference and actually very spoon less so I will respond in more detail later but I have many similar stories. Too many. Down to getting blacklisted from local self advo stuff.

When the budget was cut the self advos who worked as receptionists in our agency’s office were let go first. The executive director’s daughter, hired as a nutritionist, was allowed to stay. And when I complained - both women were devastated, their jobs were really important to them and they took pride in them, for one it was her alternative to a horrid sheltered workshop but they were like your friend, not about to bite the hand that in their eyes fed them - and I was told in front of them that the jobs were only transition jobs, supported employment.

BS. They’d been there for years with no mention of being temporary.

So many stories. Will tell them. But too sick and spoon less right now.

But we need systems reform. We need more involvement. We need to somehow get in there.

More later.

(We need more conversations like this.)

Yeah ideally such an anthology would include some way of letting people unable to read have their stories transcribed so that they can participate as well.  Because I bet they have this done to them a thousand times more often than people who can read.

I’ve always wanted to do an anthology, or rather a group of anthologies on different topics, but I’ve never had the time or energy.

And I’ve found myself far more interested in the general-DD self-advocacy movement than the autistic self-advocacy movement.  Mostly because on the whole we tend to be more about actually getting our goals done, than about a lot of the weird side-tracked stuff that happens in the autistic movement.  Not that bad things don’t happen there too, they’re just different bad things.  I think DD people on the whole are far more aware of our common problems that need to be solved, than autistic people on the whole, because DD people in general (which includes but isn’t limited to autistic people) tend (and that’s a tendency, not an absolute) to be more in a common situation than autistic people in general do.  For reasons I don’t quite understand.  I mean there are tons of differences between various DD people’s experiences that shouldn’t be forgotten, but DD tends to mean a more common experience in general than autism does.  Maybe because it’s not a diagnosis, it’s a system that most DD people are subjected to.  And that’s why we tend to have it more together, because (a) we’ve got a far longer history of organized self-advocacy, and (b) we tend to be more aware on the whole of what can be lost if we don’t do something.  There also tends (tends, mind you) to be more inclusiveness of people with a wider range of abilities, and less focus on what exact diagnosis a person has, because that’s not the point.  The point is getting stuff done.

And it’s far easier to strike up a conversation with a bunch of politicized DD people (including autistic people, but in a DD-oriented setting) than it is to strike up a conversation with a bunch of politicized autistic people in an autistic-oriented setting.  And easier to feel included in the actual discussion regardless, and not just as an “honorary aspie”(*) or as “that one LF (*) person that we let come here because she’s different than Those Ones”.  

(*) NOT a label I put on myself, a label others put on me.

But the big problems in the self-advocacy movement still tend to be huge ones.  And one of the biggest is co-optation by people like the woman I described.  Dave Hingsburger writes about it in Cutting the Strings: Suggestions for Self-Advocacy Groups.  Which used to be on the web and isn’t anymore and I can no longer get it in the Internet Archive.  It’s way too common.  But in many ways it’s easier to know what you’re fighting there, because in DD self-advocacy groups the problems often come from without (“facilitators” taking over), and in autistic self-advocacy groups the problems often come from within (any number of problems, only a few of which are people who get into it for status, people who are uncomfortable with certain kinds of autistic people, and people who don’t actually know what the serious problems are that we’re trying to fight, or people who know some of them but only ones they see as specific to their own variant of autism).

One weird thing that happens in autistic self advocacy is that there’s this… I don’t know the word… This idea that the really bad things happen to other kinds of autistic people?

That even if we’re rejecting functioning labels. we know it’s really ~low functioning~ people this happens to but let’s say lurid things about their experiences?

And it’s really not actually like that. But some people talk like it is.

Yeah.

And the “these things only happen to Other Types of autistic people” thing.

I’ve had so many assumptions made about me within the autistic community just because I’ve had certain experiences, been regarded at some points in my life by some people as LF, and currently can’t talk… and then gotten angry with me when my experiences didn’t fit their stereotypes.  One such person even told me that I had absolutely no right to be upset when people followed such stereotypes to the point of judging me for it, because there’s no possible way that people could not have those stereotypes because “the rest of the time, they’re always true”.  Really frustrating interaction.  And apparently I was the judgemental one because I was upset by people treating me like shit for stuff I couldn’t control. 

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