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6:38am March 5, 2013

➸ Trying to find the right words: huh

youneedacat:

josiahd:

Is there a lot of gossip? I hope I can stay out of it. Want to stay out of it.

Autistic community helpful for me. Very. Want it to be ok to like.

There is gossip in some parts not others. Autistic community is not just one thing. Some segments of it love to…

It can take that form and many others. Basically some people feel like “leaders” and “celebrities” (defined I have no idea how) must be ripped into and torn down for the slightest sign of imperfection, including things that they didn’t even do or say, or would be impossible to avoid.

When I became a so called celebrity when the media briefly noticed me, suddenly people placed expectations on me that were completely unreasonable. For instance:

I had to represent all autistic people in every way possible. Some people said i was too high functioning to represent autistic people. Others claimed i was too low functioning. I never claimed to or wanted to represent all autistic people which is impossible for one person to do anyway but people tried to act like I should.

People micro-analyzed my every physical movement. Suddenly I was bad because I looked too little like the person doing the analyzing or good because I looked too much like them. I was bad because I didn’t smile and autistic people can smile. Even though I had smiled and the TV people edited it out. Other times I was bad because I did smile in other places and autistic people shouldn’t smile on camera. I was both bad and good for looking too autistic or not autistic enough by various ridiculous criteria. Also some people said i was an embarrassment to all autistic people for not being able to hide. Or that I wasn’t rocking properly because my arms held the sides of a chair once while I was rocking.

And I was bad bad bad because my abilities both real and perceived changed over the course of my lifetime in a way that is well documented in some autistic people but not stereotypical enough. Terrible that I had elements of stereotypes of both high and low functioning at once. Terrible that I oscillated between one and the other in the eyes of people who didn’t even understand how autism works in real life on a large scale for lots of people, but who just loved their stereotypes so much. Also I was evil and a fake autistic because of a past that was both misrepresented, and never would have happened if I wasn’t autistic (see my post about passivity and naïveté not being virtues).

And of course I was both wonderful and evil for saying various things about autism. Some of which I actually said. Others were the product of misunderstandings or the media’s selective editing.

Some people said I was too low functioning to write what I did and other people were writing it for me. Others said I was too intelligent to look like I look and therefore my appearance is just an act and I fake being autistic for personal gain. Others said if I look one way at one time and another way another time that proves that I’m faking when I look more stereotypically autistic, rather than that my abilities fluctuate like a good deal of ours do. Or if I have acquired a disability or more than one throughout my life then it must be fake because all disabilities are stable and lifelong.

Basically you can’t do anything right with some people once you’re put into one of those positions in their minds. It doesn’t matter what your opinions or particular set of autistic traits are. People will carry unrealistic expectations and rip you to shreds when you turn out to be a fallible human being, or someone who doesn’t fit their stereotypes of autistic people, or HFA people, or LFA people. Traits that are ordinary in both autistic and nonautistic people will be twisted until they look sinister or disturbing. And don’t ever gain or lose the wrong skills at the wrong time in your life or people will rip you to shreds and question your honesty.

And I’m not just talking about myself here. I’ve been speaking out about this phenomenon since long before anyone considered me well known. It’s happened to every autistic person who gains just enough fame or notoriety and even the most stereotypical of us are not immune to it. And both the praise and the condemnation are equally awful because both come from people not seeing you as a person. You become a thing to them.

And I’m not saying people shouldn’t criticize people in positions of leadership or whatever. But there’s a difference between respectful criticism and tearing into someone. And there are people in parts of the autistic community who love to rip into every autistic person who they consider a leader or a celebrity (one news story and you’re a “celebrity”, weird as that is) in a fashion that is cruel and not recognizing or caring about the personhood of the people they rip into.

Also there’s often a real lack of understanding of how the media works. So if the media misquoted someone or uses selective editing, that will be presumed the truth. Three times I’ve quoted other people with full attribution, and had the media quote those things as if they were me, including times when I was careful to tell them not to do that. Then people started saying I was trying to take credit for these quotes when actually I’m rather anal about giving proper attribution. I made a video for the benefit of a girl with cerebral palsy, and the media said I made it to educate people about autism, and the media is believed over me even though the dedication to her is right there in the video. I tried to get the media to show us as a community of people with varying opinions, and instead they depicted everyone else as just people who were “inspired” by me. I could go on for ages. If someone is quoted in the news you have to be really careful because the media may be controlling the context. I never knew all that before it happened to me.

But yeah. There are people still today who will tell you gossip from the eighties about the autistic self-advocacy leaders back then that exactly mirrors gossip from the nineties and later about other leaders. It’s predictable and ugly. And each time a single person is expected unfairly to represent a whole community of people. So everyone is too high or low functioning too fake too real too whatever. And everything I just told you is the short version — I could tell you the exact gossip that exists about a large number of specific people, I just don’t think that would be fair.