12:08am August 25, 2013

➸ Trying to find the right words: to be clear

josiahd:

When I’m talking about aspies… I don’t mean “people whose diagnosis is AS”. Mine happens not to be, but that’s got mroe to do with the doctors than anything else. The difference between AS and ASD isn’t meaningful. But there’s a cultural thing surrounding aspie…

Also what I hate?

People using me as ~low functioning~ when I reject the entire concept of low and high functioning.

People using me as a warm body to insert into a story that was never mine. (The old “this person could never speak and was able to communicate by typing and suddenly everyone recognized she was intelligent” thing.)

AND THEN people holding ME responsible when they realize that was never my life and I never fucking claimed it was my life. I’ve said I don’t speak, that people see me as low functioning, that I have a hard time proving that I’m a person, BUT that doesn’t mean that my life fits the standard story that everyone expects from those attributes. And there are LOTS of people like me whose lives don’t fit that story. But nobody hears about us because stereotypes.

I get fed up with being used when it’s convenient to give a name to a stereotype, then discarded or even shunned and blamed, when people realize I don’t fit the stereotype THEY created for me.

(And yeah I once did a protest website where I selectively described my life in terms of that stereotype but the point of the whole website is that you can take any autistic person and selectively edit their life to make it look as tragic as possible, and that underneath these tragedy stories we are real people so the ASA needs to stop it. A lot of people seem to have missed the point.)

Sorry for ranting but I get fed up with all this too. And I’m uncomfortable with being used to represent a very large and diverse group of autistic people, by people who assume we are mostly all alike anyway.

I don’t mind people linking to my writing, quoting me, etc. but I prefer being approached as an equal, not as “see one of Those People agrees with us”. Especially when I might not actually agree with them.

As in like… The fact that I don’t want a cure, and an aspie supremacist doesn’t want a cure, doesn’t mean we agree on cure issues. Plus I don’t see cure as the central autism issue or the test of whether you’re a real activist.

I also don’t agree with people who are basically reciting ideas that trace their way back to me (and they rarely even realize this), but who don’t understand the reasons I and other people have those ideas? Because groupthink isn’t just for nonautistic people.

So two people saying the same thing don’t necessarily mean the same thing and people saying I agree with them are not always in agreement with me at all.

And people using me as an example of what I’m not then others blaming me for people using me as an example of what I’m not… Not fun either.

But when I say I’m not low functioning, I don’t mean I’m high functioning or that I’ve never been officially described as low functioning, I mean screw the entire concept. If people were calling me high functioning all the time I would object just as much. I believe there are differences between autistic people, I even believe there’s privilege based on what you’re considered and what your abilities are, but I don’t think these standard categories have any reality in and of themselves.

Also my life is so complicated compared to ANY of the life stories people assume autistic people have, that it’s utterly impossible for me to describe all the differences at once. Best just to leave your assumptions at the door.

I feel like to many people my name has come to mean this larger than life illusion in people’s heads rather than me the actual person and I have suffered because of the fallout of that many times.

Notes: