And People Still Fail to Get It, Again and Again

I've been reading a few things in various places about how any kind of self-advocacy, initiative, or attempt to stand up for one's rights, when it's done by psychiatric patients and disabled people, is seen as none of the above but as being manipulative, uppity, noncompliant, and having an entitlement complex. I've already become familiar, for better or worse, with the fact that psychiatrists will label you noncompliant over incredibly stupid and minor things, but I'm also starting to become familiar with the fact that people who aren't medical professionals in any way whatsoever will still, for some reason, perceive you as the above things if you ask for reasonable accomodations, and try to convince you that they are not reasonable accomodations at all but excessive ones, and force you to fight for every square inch of extra help or accomodation, and then give it grudgingly if at all.

And sometimes this happens even after you have tried to make attempts at explaining to people that the effort you appear to be putting out, at the surface, is an incredibly miniscule fraction of the effort you are putting out internally, and requires the sacrifice of a lot of other things. But since all of the effort and all of the sacrifice takes place "backstage," nobody has any reason to believe it exists. They see you talking; therefore, talking must be easy. They see you moving around; therefore, motion must be effortless. (Possibly one of the reasons why some autistic people have talked about being treated less strangely, and as more of a person, if they use a wheelchair-- it's a clear advertisement that movement, at least, is not effortless, and the fact of its being there means there's "something wrong" which makes all your other "quirks" understandable, even if they can't fit those quirks to a pattern.) Maybe it's like being a duck-- you appear to be gliding smoothly across the water surface, but underneath the water where people can't see, you're busy paddling like hell.

This is why it almost makes me laugh so hard when people complain about certain accomodations "inconveniencing them" or "putting them out," because however much extra effort they might have to put in, it's probably nothing compared to the amount of effort I'm putting out. You grade a paper two days late. I can spend six hours getting up, sitting down, pacing, flapping, lying down, staring at the wall, pulling my hair, trying to shove myself towards the thought structures necessary, just to write one paragraph of that paper, sometimes. If anyone still thinks that's a comparison in terms of "inconvenience," I'd love for them to switch bodies for a day.

Yet if I tried to point that out too vehemently, I'd be seen as defiant, manipulative, angry (as if being angry makes your point somehow invalid), etc. But unless you shove that fact into people's faces and shove it repeatedly, it just doesn't seem to sink in, and I am not very good at getting those facts in people's faces. When all the facts are on the table, it's the "normal" people who come across looking like whiners, not me, yet I'm still vulnerable to those guilt trips; they can still hit home and hit hard, and I can't stop believing on some level that I'm a horrible, evil, manipulative person who ruins the lives of everyone around them by inconveniencing them so much.

The first time I tried to get accomodations, I was in sixth grade. The school I was at had a bunch of ideas about "children learn better in an unstructured environment," and that basically resulted in my desperately trying to avoid shutdown in a noisy loud environment where everyone saw "the retard" as a convenient bullying target, and not getting any work done at all. The kid in my class who'd been diagnosed with ADD was removed from the room and got to do "independent study"-- that is, to do the same work as everyone else but in a different room. When I asked for independent study too, everyone seemed to regard this as a special privilege I didn't deserve, and even as something potentially dangerous, because I would supposedly get an entitlement complex, and that if I was "let off the hook" from having to do it the same way as everyone else now, I'd never learn to "do it like everyone else" in the future. I finally got independent study "privileges" at the end of the year, after my parents, of all people, started pushing for it, but everyone was very adamant on the point that "in the future, you won't get this. You'll have to do it the same way as everyone else, with everyone else."

And that was just one incident of a lot of others I remember-- in which asking for some kind of accomodation was portrayed by others as a privilege, or as something I had to "earn," or as something that would "spoil me" and give me an entitlement complex. Where everyone's fears that I would get an overblown sense of entitlement came from, I have no idea, because if anything I had just the opposite, and it became more so as I got older.

These things-- accomodation, and related issues-- are rights, not privileges. But even if I can acknowledge that intellectually, I'm so used to having to shut the hell up in order to get anything at all that my gut reaction when anyone gives me any kind of accomodation at all is fear-- waiting for the other shoe to drop, waiting for them to decide I'm a horrible person who's just making excuses and is trying to drag out some manipulative game to see just how much of a free ride I can get, and to decide I deserve nothing at all. I'm seen as some kind of puppetmaster, when in reality I'm the ones on the strings being jerked around at everyone else's whims.

I don't think people get it. I expect nothing. I expect nothing to be given to me. I expect to be called a liar and manipulator and an excuse-maker and to be told that the system owes me nothing and that I can sink or swim. I expect to be forced to plead, beg and grovel in order to get any kind of accomodations at school, extended deadlines and the like, and to be seen as a manipulative liar if I still can't do it. I expect to be forced to beg like a dog for food, or water, or sanitary napkins, or the right to go to the bathroom, or similar things, and perceived as a childish brat who needs to be punished and taught a lesson. I don't know how to communicate to people that I expect nothing, or how to stop them from believing I have a sense of entitlement, when in fact it's exactly the opposite. The fact that I expect nothing doesn't mean I should receive nothing, but it does mean I expect nothing, and people should take that into account when working with me.

No, I'm not an uppity autie. I'm a goddamn roll-over-and-play-dead autie who's afraid to do anything other than to keep going "yes sir, yes sir" out of terror that someone may get so angry about my "defiance" that they'll start yanking away all of the "privileges" they've granted me and more, just to punish me. I could probably stand to be a little more uppity, or a lot. I wish I knew how to break the cycle of fear and being intimidated into shutting up and then not being able to do what I needed to do because I didn't get the help I needed.