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9:15pm January 7, 2012

➸ Perpetually Myself: draggle: allies-person: What compels people to become seemingly...

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iamthethunder:

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What compels people to become seemingly apolitical Celebrity Autistics?

I cannot for the life of me understand this.

Perhaps because it is best for one’s mental health to be apolitical in certain situations, such as being famous.

True, but I’m wondering…

You just nailed it.  For better or worse, many people want to be known.  As a tuba player, I see nothing wrong with that.  Most of us have egos and ambitions, though only some of us acknowledge it.  The problem is that people who want to be famous for anything but activism must be uncontroversial.  Fame has always looked to me like popularity on a massive scale.  Popularity means not arguing, not making a fuss, and espousing values and ideals considered socially acceptable by a wide market.  Being an angry, minority actor, musician, etc. is a great way to get typecast in those roles or written off as too radical to help create mainstream culture.  I wish more autistic people who have gained prominence would speak out, but I understand how dangerous it could be to their careers.

To me, though, there’s something inherently kind of fishy about being famous just because you’re autistic, or seeking out fame on that basis alone.  (Wanting to get a particular message out is a different story, but that’s not what the group I’m describing generally want to do).  I mean, okay.  You’re autistic.  Big fucking deal.  So are a lot of other people.  What makes you so special?

As Jim Sinclair says, “we need fewer professional autistics and more autistic professionals.”

Maybe I’m a bit harsh on these aspiring professional autistics.  From what I know of one guy in particular, a former friend of my husband, a big part of the reason why he’s aspiring towards Celebrity Autistic-hood is because he hasn’t been raised to believe that he can do anything else, even though that is definitely not true.  And I think he genuinely believes that he’s helping.  But really, he’s actually promoting some pretty problematic things.

These celebrity/professional autistics typically denigrate other autistic people.  Most problematically, they promote “functioning” hierarchies and act as though so-called “lower-functioning” autistics are somehow beneath them and in need of paternalism.  While simultaneously misrepresenting politicized autistic people.  (J. Robison, I’m looking at you.)

We don’t need any more celebrity autistics.  The market’s already saturated with them.

I just read a book by a guy who was pretty openly aspiring to such status. For him, attention is like getting high. And so eventually he figured that rather than doing really destructive things for attention, he’d rather get attention for giving lectures about being autistic. 

I doubt that it’s always so simple though. I mean, sometimes it might be like that deep down for some of them who are being less honest with themselves than that guy is. But I bet there are other motivations too. 

A slightly more complicated motive is one that I’ve seen within autistic communities even among “leaders” who aren’t trying to become celebrities. Basically… you’ve been an outcast and the brunt of bullying your whole life. Suddenly there’s a community where you can find belonging. But more than belonging too – you can acquire status, as a leader, as a professional autistic, as a celebrity autistic, whatever. People look up to you and these are things you never dreamed you could have, even as you used to envy the people who had them. So now that you have all that wonderful status, you have to stop doing anything that would threaten that status.  This was told to me by an autistic person who did at one point manage to find fame (not in the autism world) and got addicted to it for awhile. 

For some people, it can be very gratifying to suddenly be on the other side, doing all the things you used to watch popular people do from such a distance you never thought you’d get there.  Unfortunately another of those roles some aspire to is that of the bully – to turn the tables and be the one with the power for once. Several of the people who have stalked or threatened me and many people I know, fall into that category (and they pull all kinds of BS moves like “help us bully them, and we won’t bully you”, or “if you actually believe her, you’re stupid”, both of these manipulating autistic people’s insecurities).

This is one of many reasons that I think it’s a very damaging myth that autistic people are incapable of wanting these things, and incapable of carrying out every single social dynamic that nonautistic people carry out. In reality, the reason autistic people tend not to carry out these social dynamics is we are normally too close to the bottom of the heap, and too lacking in large groups of similar people, to have a chance to carry them out. When we finally get a huge group of people of more or less equal social status, we do everything – everything – that other people do in their social groups.

Then another problem crops up:  Never having been in a position to do these things, we don’t know what it feels like to do them. And so many of us convince ourselves that if we were part of an in-group, or doing various power plays, we would feel it somehow. This throws many of us into deep, deep denial.  And those in the deepest denial do the worst damage, because believing they can’t do something leaves them unable to monitor themselves for doing those things. And if they are not closely monitoring themselves, they will completely miss it when they wield social power. This leads me to believe that one of the most damaging things in autistic communities is when autistic people repeat the myths that autistic people are incapable of social power games. Or worse – do so while playing a social power game itself – saying things like “Well I am incapable of such games, and that means I’m more autistic than you.”  And if you don’t think that tons of autistic people play “More autistic than thou”, “Less autistic than thou”, “Lower functioning than thou”, and “Higher functioning than thou”, you’re missing large parts of the social dynamics of the autistic community. 

Another problem for lots of autistic people is inexperience. By being in social groups of relative equals, most nonautistic people are learning things at very young ages. Meanwhile autistic people can get to ages 20, 30, 40 and so on without learning things most people learn in the 4-9 year old range. Then we encounter the autistic community. Which is lots and lots of people who never learned those lessons. So we are all (hopefully) in the process of learning, and that leads to situations where people really, as above, are assuming that if they were pursuing status or putting others down then it would feel like they imagined nonautistic people felt when we watched them doing such things. Usually our imaginations are wrong and this leads to lack of awareness of what we are doing. 

There are also though those of us who end up in leadership or celebrity type positions without even trying.  Everything I am about to say, I am saying because lots of the autistic community doesn’t understand the way certain things can happen, and then some of us get badly misrepresented.  I didn’t even know how certain things worked until they happened to me. So here goes my story. 

I genuinely never aspired to be a leader. I was just writing about things that I thought were important and doing what I thought was right because I cared what happened to people.  Cared so much that sometimes I would cry myself to sleep at night thinking of situations we get put in by society.  Then one day I flamed someone, and someone else emailed me privately saying, “You really need to watch yourself. You’re a leader and people look up to you. When you flame that guy, other people are going to believe what you said and treat him badly.” And my response was something like “WTF, when the hell did I become a leader?” But I did begin to try to watch myself more closely. 

A few years later, people started calling me “famous” and saying things like “when you get famous” as if it was a future inevitability. (In fact one way that father who did the Youtube video people around here liked, threatened me after fucking with my head, was to say “When you get famous I’ll reveal the people who know you aren’t autistic.” This after he told me he was going to make a public apology if I would only give him this little piece of personal information…)  Then one of my videos mysteriously went viral. Then my name started popping up in magazines. Then CNN asked me for an interview. 

My friend tells me that there are two basic ego responses to fame. One is to seek it out. One is to be terrified out of your mind. Both are equally destructive. I am saying this so people won’t think my response is in some way  less egotistical than people who seek fame.  I just want to let people know that you can get famous without wanting to – because there’s also this big myth that autistic people who get this kind of attention must have wanted it. 

Well I didn’t want it. First because it just scared the shit out of me. Second because of the stalker types who had threatened that if I got famous they would go on the attack (I now know that was a half truth, they were planning to go on the attack either way, but they saw the media attention coming before I did and thought it would be cool to make me think I brought them on myself). I told a friend I was going to say no to CNN. She told me that if I did that, I would be rejecting an opportunity to get some important messages out there. This made me see I was letting cowardice get the better of me rather than making a decision based on ethics.  So I made the decision, reluctantly, to say yes. 

It’s hard to describe what happened next. They came and followed me around with cameras for two days. Whatever they asked me, I told them. I was so terrified that my body stopped obeying me and did its own thing the whole time, whether that was stimming a lot, running away from the cameras, or being stiff and immobile.  The whole time I was thinking “Shit, people will think I’m always like this.”  It was so overloading that each day after they left I would end up ticcing up a storm – loudly. Nonetheless I tried hard to get my political disability messages out there – that was what was behind the video that led to all this, after all.  The week that it aired, I could barely touch my food I was so scared. 

And when it did air I was even more horrified. Practically everything they said was wrong. Either honest mistakes or stuff they pulled out of their asses. Like they asked me why I made that video. I said it was for a girl with severe CP, whose parents were having her sterilized and removing her breasts and making it so she would never grow larger. And that people were saying since she “had no language” and was “profoundly retarded” that she should not have the same rights as the rest of us. They even said things like “If we gave her rights we would have to give fetuses rights and have to end abortion.” Yes they really said that and it became a “feminist” opinion that it was good to remove perfectly functioning parts of a woman’s body if she was sufficiently disabled. So I made the video to show that just because someone has a nonstandard way of communicating doesn’t mean they aren’t a person or don’t communicate or shouldn’t have basic rights. 

CNN got that answer on tape. I was there. So was a friend who was in the room the whole interview for moral support. But what they said was something like “Amanda made this video to take us into her autistic world.” Which sounds more like a quote from Sue Rubin than me.  I’d spent all day explaining to them how much I hated that idea of “in their own world”.  Most of the rest of it was similar. They clearly had an idea of the story they wanted before they even met me. They didn’t let what I said get in the way of their assumptions. Meanwhile I was terrified to stand up to them because a friend had told me, from experience, never to piss off a reporter.  So I felt kind of helpless watching everything unfold and being afraid to set anything right.  But essentially, they turned a very political(*) person into a highly apolitical human interest story.

I was very reluctant to appear another time but they are very persistent. This time I said I would appear if they showed other autistic people as well. I was highly uncomfortable with them focusing on me alone. So they found one other autistic person and had us do an online chat with each other, filming both of us at the same time. We chatted about political organizing around the fact that it’s always other people trying to tell us and others who we are.  CNN turned it into a story about how I was this amazing person that the other guy was inspired by. It made both of us highly uncomfortable, because that is not our relationship. 

So then CNN followed me to an autism conference. They interviewed tons and tons of people and we all felt really good about them focusing on a wider community.  Then they made the broadcast almost all about me with tiny parts about one or two other people. The people from the conference felt betrayed. I stopped answering CNN’s emails asking if they could do more interviews. At that point I had one more obligation and that would be it. 

So another place I had appeared was Wired Magazine. Again I told them in a lot of detail what I stood for. IIRC (I’m so uncomfortable reading or watching media stuff about me that I just don’t, so I’m going on memory) they then somehow made it so it sounded like my whole point was proving “autistic people aren’t retarded”. Never mind how offensive I thought that kind of focus was. They also misrepresented two things – one a quote from another autistic person, another a video made by someone else – as if they were things I had made.  I told them the real sources for those things before it went to print. They told me that those things were so tiny it didn’t matter.  The video in question was by a guy who I already knew to be a bully.  He then felt even more justified in bullying me, because in his eyes I’d tried to take credit for his work. Weirdly, even though I always, always give sources when I quote people, the media has several times attributed other people’s words to me, which gave bullies ammunition to say that I like stealing the credit for other people’s work. 

Then of course the day the Wired photographer came around separately and spent ages taking photos. Finally she told me if I was so overloaded then try to just let go and do what comes naturally rather than trying to hold it together. So I got in bed, took my glasses off, and began zoning out and stimming.  Fey came up and we started interacting the way we normally do. She was definitely responding to the shutdown. And then the photographer started exclaiming about how she’d never seen a cat and a human communicate like that before and nonstop pictures started clicking in the camera. It was one of those that ended up in the article and I was glad. 

The final obligation was the CBC. They were the closest to an okay job the media had done for me. But I had to use all my reserve energy for that show because I was still actively getting death threats, was barely recovering from a period of extreme physical weakness, and didn’t want the whole world knowing how little I could resist physical assault at the time.  And that was pretty much the end of me allowing the media into my life. 

What people, even people approving of my media appearances, didn’t get, was that for me, allowing reporters into my home was an enormous sacrifice.  This was not fun. Not even a little. It was emotionally grueling. I was allowing strangers inside my house to go and tell the world what they saw there. I was, due mostly to lingering self-hatred, mortified to see how autistic I looked on camera. Some people said I must be acting because I looked more autistic than their children that they viewed as lower functioning than me. If I could have looked normal at that time I would have.  The entire time they were filming it was all I could do to listen to them and get my fingers and brain to type responses.  I was sitting there pretty much screaming inside because I could not force my body to stop behaving in ways that I knew looked very, very stereotypical.  The stress made it impossible to look any other way.  

Besides all this, I knew there would be fallout and bullshit not only from my bullies and stalkers but also from the rest of the autistic community. And worse in many ways, the way my YouTube mailbox began overflowing with messages claiming I’d inspired them. Sometimes the positive messages were the hardest to take because being put on an undeserved pedestal feels very threatening for some reason.  

People do not know how the media works. They think it’s straightforward reporting things more or less as they happened. My experience was that was far from the case. Sometimes they would even tell us where to stand and what to do and do multiple takes just like a movie. And what they said I said was generally either taken out of context or flat out wrong.  (Which is why I try to be wary of assuming the media are properly quoting other autistic people.) But people in the autistic community, whether they approved or not, tended to take it at face value and hold me responsible for everything the media said of me.

There was also this idea that I sought out the media. I never did. They always came to me and many times refused to take no for an answer. Last year I even had a bunch of reporters from Russia, with a camera crew, show up and start banging on my door, rattling the knob over and over, and trying to force the thing so they could get in. They came back after being thrown out by building managers for trespassing and did not leave until they were threatened with the police.  Meanwhile I was pretending not to be home so they wouldn’t hear me and be encouraged to try harder. Later they told someone it was okay to do this because they’d left a message in the YouTube mailbox that I refuse to check anymore because I can’t stand all the messages however positive they might be. 

Many people in the autistic community want their public figures to be perfect. In impossible ways. I got flack for being too high functioning and too low functioning at the same time. If I did something stereotypical I was promoting stereotypes. If I did something unusual, then maybe that showed I wasn’t autistic at all.  If I was in the media at all I must want it and if I talked about how much I hated it that was false modesty or something.  People picked through anything they could find about me and ignored anything that contradicted what they wanted to think about me – bad or good.   Others picked through things looking for apparent contradictions – one person said that because I said one of my synaesthetic letters was “olive” at one point and “brown” at another, you couldn’t trust anything I said. (I had said olive because I once colored a web page a color that looked quite similar to me and someone referred to that color as olive green. So I thought if this was a similar color I could use the same name.  This is the sort of thing where a person could normally be given the benefit of the doubt for. This is exactly what Clara Bow meant when she talked about how she can do things that are harmless when other people do them and yet when she does them it’s scandalous.  My various bullies love being able to exploit that dynamic.  If you spin something just right then you can make literally any action, even failing to smile when telling a joke, look like evidence of being a horrible fake person.)

Some autistic people said it was horribly embarrassing to be associated with someone who looked like me, who had a face like mine, whose body moved like mine, who was fat, who was ugly, who dressed like a slob.  They picked through just about every bit of my appearance and made it sound as unflattering as possible. This caused my self-hatred and self-consciousness to really get into gear.  And every time my body refused to do my bidding on camera I felt horrible and exposed.  And that exposed feeling was terrible.  It was like “Hello world, now you all get to see the ‘me’ that I spent most of my life trying to hide. Now I can’t hide it anymore, my fear means I can’t hide even a little, and everyone gets to see who I really am.”  It felt like I was an ant being peered at by this giant eyeball that I couldn’t escape. And this is only fame of the 15 minutes variety – I don’t know how true celebrities handle it. 

But I either couldn’t or refused to express most of this. I didn’t want most people to see how much this had all gotten to me.  My inner experiences felt like all I had to myself at this point.  But I was basically in a constant state of panic from the time CNN contacted me, until the health crash that removed my ability to be quite that amped up on fear.  I am a highly fearful person in general and a lot of this was a nightmare to me. 

And the criticism and nitpicky shit (which made me feel that there was literally no action I could take that people wouldn’t loudly criticize) wasn’t all of the problem. What truly scared me on many other levels were the people who looked at me like I had the answers for everything.  The mother and son who started calling me on the phone all the time thinking that I could get him out of an institutional situation even though I was thousands of miles away. That went away after I changed my phone number because of all the creepy hang-up calls I was getting from my stalkers.  (Probably the same ones who put my address and what they wrongly thought were my staff hours on the net and encouraged people to come kill me. Not joking.) And then the woman who showed up in my apartment and told me she saw me on TV and moved into my building because of me and then demanded that I get her money and services and in general had no boundaries at all, even in life and death situations. 

But lots of people online treated me similarly. They wanted me to somehow make their children learn to type. They assumed I’d followed the stereotypical progression of no speech at all to FC to typing or something similar. It was so hard to explain my real communication history because, like my educational history, it’s really convoluted. People thought that somehow I could always tell them what to do for children I’d never met who sounded very different from me. Some people even tried to tell me I was very… spiritually advanced or some shit that didn’t even make sense… crystal child BS.  It’s very uncomfortable to have people look up to you for being something you’re not. It’s also uncomfortable when they figure out you’re not who they assumed you were and then blame you for their assumptions even if you were saying they were wrong the whole time.  (Another one of my favorite weird things people have said to me:  "What do you mean you’re not claiming to be low functioning?  If you say you can’t talk you’re saying you’re low functioning!“ *headdesk*)

So I ran away without even realizing that is what I was doing. I’d gotten all that attention for being political so I became less political in the hopes it would go away. So it did to some extent. But then I wasn’t really acting as myself anymore, and it’s been hard getting back. I think Julia was the catalyst for making me realize what to do because she had a quality I had buried. And that quality helped me find it again although it’s still a struggle not to slide into ultra-passivity.  It’s funny that being more passive and apolitical helped me escape media attention when for other "autistic celebrities” it seems to work the other way. 

I know that was really long.  The reason I said all that is a couple things.  I know you already know this – but I wanted others to see what it can be like to be put in that position without really wanting to be there. I wanted attention to my ideas, not to me as a person, but nobody seemed to want to let that happen.  And everyone wanted me to fall into the “classic LFA success story” rather than my own actual story.  The other bit I wanted to make clear is the way large portions of the autistic community treat “celebrity autistics”.  I am not talking about valid criticism of their views, and am not criticizing you because AFAIK you don’t do this. But it’s like we get held to impossible standards. Each person has a different opinion of who we should be. Not what we should say – but literally who we ought to be, to send the best message about who autistic people are in general.  A message somehow sent by who we are rather than what we say.  And there’s also some autistic people who will try to prove that just about any “celebrity autistic”, no matter who they are or what their views, is somehow dishonest, not really autistic, or not really who they say they are.  I’ve seen this in the decade+ I’ve been involved in this community, it’s like any autistic person who gains recognition gets ripped to shreds by certain people.  And people believe if you’ve been on the news then no part of your life ought to be private anymore, and act suspicious of you if you want privacy. Most things that happened to me, including the stalking and harassment and defamation, have happened to lots of other autistic people from around 1990 onward. 

I do draw a strong distinction between all that and what you’re talking about. It is perfectly valid to disagree with someone’s actions or words. (Bullies like to blur that line and tell their targets “you just can’t handle disagreement” though.)  I just try to be sure whether I’m doing something reasonable or unreasonable when I disagree with someone in that position. For instance lots of autistic people criticize Temple Grandin because so many people believe whatever she says about autistic people. That is not under her control. From experience:  It doesn’t matter what you say about “don’t necessarily just assume everything I believe is absolute truth” – once people have identified you as a Source Of Truth, nothing you do short of shutting up will stop them listening to you more than they listen to others. OTOH it’s totally good to criticize the fact that she tends to either act like all autistic people are like her, or else that there’s only between 1-4 categories besides hers, categories that may not even be real.  The difference between those two things seems really obvious to me, but a lot of people can’t tell the difference and will happily criticize you for stimming wrong(**) or for people listening to you too much or something else beyond your control. 

What bothers me about a lot of professional autistics is that I have rarely seen one who is not promoting stereotypes.  By which I don’t mean being stereotypical. A person can’t help their expression of autism, stereotypical or not. I mean actively promoting views like that only stereotypical people are real. And I know – from knowing some of them – that they are simply hiding anything about themselves that is not stereotypical because otherwise they could not promote those views.  And even some who claim to dislike stereotypes do this.  

Denigration based on functioning level crap also tends to go two ways.  There’s people who are nasty to those they call lower functioning, and also people who are nasty to those they call higher functioning. In both cases people pretty much pull the criteria for functioning levels out of their asses. And usually they choose the criteria so that they are on whichever side they want to be on:  You could take two more or less identical people and one would draw the criteria to make themselves LFA and the other would do the opposite.  It depends more on their motivations than anything else. 

Usually but not always I end up on the low functioning side of people’s definitions regardless of what side people put themselves on.  If they call themselves HFA, most likely they’ll be saying that people like me are some combination of: Pitiable, useless, worthless, better off never having been born, scourges on our parents’ lives, etc. If they say they’re LFA, I’m more likely to hear some combination of: we unlike HFA people are the real autistics and the only ones that matter, we all want to be cured, we’re totally unlike HFAs or worse aspies, we always have more problems than HFAs, we struggle with things like self injury and HFAs don’t, we have the “real problems” unlike HFAs, etc.  Needless to say I think it’s all (including the categories themselves) BS, but it’s dangerous BS that has so implanted itself in people’s heads that they seriously can’t perceive all the reasons reality doesn’t fit into those boxes.

A lot of people also don’t seem to understand that when you’re in a position where lots of people listen to you, you can do a lot more damage with opinions like that than other people can.  It’s not fair but it’s true and you kind of have to at least make an attempt to work with that.  Like let’s say that I went around saying that people with Asperger’s don’t have any serious problem with daily living skills. People would be likely to believe me for two reasons that, combined, strengthen each other:  That stereotype already exists. And by virtue of being well known, people give my opinion more weight.  For every autism professional who believes that, the probability grows that at least some people diagnosed with Asperger’s will end up one or more of these things: homeless, malnourished, dirty, sick, unemployed, or dead. Because what professionals believe affects service eligibility among many other parts of autistic people’s lives. So when professional autistics make comments along those lines, they’re not just hurting feelings or something.  

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(*) By political I mean dealing with power dynamics – in this case disability rights. I don’t mean most of the things like ideological stuff or government stuff that most people mean when they think politics. 

(**) I wish I was joking. I have been criticized for:  Rocking too fast.  Sometimes pushing off from chair arms while rocking. Flapping side to side instead of up and down. (I do up and down too but not that exact moment but seriously WTF.)  Rocking in one video when I had in previous videos only had my hands moving by my eyes. Saying I was moving my hands in front of my eyes when really they are off to the side a bit. (I can’t always tell the difference but even if I could WTF.)  Moving them off to the sides of my eyes at all. (Supposedly proved I was “performing” rather than “stimming”. That I’ve met dozens of autistic people with that stim means nothing to them.)  Rocking in a particular rhythm different than someone else’s rocking. (I started observing people at conferences after hearing that.  Lots rocked just like me.  Nobody picks on them for rocking wrong.) Holding a toy cat while rocking. (Because apparently only one person in the world does things like that and I am not her so I must have got it from her.)  Stimming differently in one situation than another. (That is when I learned that supposedly autistic people only have one set of stims – all the time.)  Stimming in a way that did not resemble the person criticizing me and therefore wasn’t as real as someone who did resemble them. Stimming in a way that sometimes “looked unnatural”. (I know what quality they meant, although I wouldn’t have put it that way – it’s an artifact of my movement disorder.  Again I’ve seen plenty of autistic people with that same look.)  Stimming in ways that supposedly was ignorant of the reasons “real autistic people” (read: the one person who was criticizing me, who was nothing like me) stim. (And how can a person do something involuntary in an ignorant manner?) And, of course the worst, is that sometimes I deliberately rock to calm myself and “everyone knows” that all stimming has to be involuntary or it’s not real.  

What got me about all this was again that other people the same as me were generally not getting picked on for those things. Meanwhile anything I did no matter how it looked would be wrong. But the idea of a right way and a wrong way of stimming, in itself, seems so ludicrous to me that if I hadn’t seen it I could never have imagined it. 

This is a really good example of the lengths some people will go through to analyze your every movement.  And I mean every. Voluntary or involuntary, large or tiny.  I’ve even had people analyze extremely subtle variations in eye movement.  The intent was partly to make me uncomfortable and self-conscious and intimidated – and for awhile it really worked, I couldn’t even force myself to make videos because I knew people would be playing and replaying them, magnifying glass in hand.  I’ve gotten over that fear, but it’s still a really cruel thing to do to any person.