I also would like to put a link up to your entry titled “If I am killed…” up on our website. Would that be OK with you?

–Stephen

And exactly, on that stuff about “the community”. I still don’t feel like I’m part of it. I feel like I’m kind of visiting it while my “home” is institutions, even though I never want to return to that “home”. But I’m aware of that threat all the time, sometimes for things that non-disabled people wouldn’t get sent to those places for (but that I can be and have been sent to those places for).

I’m also aware, in ways that I’m not sure a lot of people are, how close many people who have never been institutionalized are, to being that way. Many think it only happens to “other kinds of people,” like there’s a specific kind of person who ends up in institutions, but I can see that for instance a lot of auties are just one public meltdown or shutdown away from institutionalization. I suppose that’s similar to how a lot of people don’t realize how close they are to homelessness until they experience it.

But I certainly often react to things as if I’m on probationary status. For example, the other day I was very overloaded, very frustrated, and my computer tried to lock me out of typing, in the middle of a sentence. (I have a program that stops me from typing periodically so I can do hand stretches, but it sometimes kicks in at really bad times.) I pushed the keyboard and mouse back so far they fell under the computer desk.

That’s, maybe a bit over how most people would react, but not totally over the top.

I reacted to it, at the time, by running off into the other room and screaming and freaking out, and then thinking because I was screaming I’d only be locked up faster, and then hiding under the kitchen counter.

My neighbor said something later like “Pardon me for commenting this way, but that response is way off the deep end.” (We were discussing the bits of institutional warpage that still seem to be embedded in my head.)

But at the time, I thought there was a serious chance that I would be tied down or put on report or forced into a group home for that, because things like that have happened to me for far less than that.

Moreover, I’ve been conditioned to view things like that as “regression” rather than perfectly ordinary frustration.

Not that I do view them that way, given enough time, but my initial reactions can still be very institution-bound.

And it still amazes me to see how much of that list I have internalised, and how difficult the reactions and attitudes are to get rid of.

tinted