5:18am October 23, 2014

“
Icon I am
A hero be
The stage of life is not for me
I’m no fairy for your Christmas tree
I fart and belch and swear

I’m not the one to invite for tea
I might just smell the cutlery
I might announce I need a pee
The queen, no I am not

I’m as clever as I’m stupid too
So some are one but I am two
I’m bound to forget how d'ya do
Perhaps wait till you are bored

If you’re bored then you can study me
I’m a specimen of high quality
Eccentric and funny and far too free
Perhaps find someone else

If you’re bold as bold
And sure as sure
I’ll hold a mirror at the door
You can answer as I knock and see
You’re only as human, as human as me
”

—

Donna Williams, “Icon I am”, Not Just Anything

This is one of my favorite poems of hers, because it deals with the ridiculous expectations people put on you when they see you as a “celebrity autistic”. And believe me you don’t even have to be that big of a celebrity to get treated like this. Like… Donna was one of the first really Big Name Autistic people (and she paid a horrible price for that), but I’ve found that my experiences (which are more “big fish in a small pond, for a little while, and got on TV a couple times”) mirror hers in sometimes-disturbing detail.

And this one is about how people expect you to behave in ways that just aren’t who you are, at all, just because they’ve heard of you and think you’re somehow supposed to be “above” them. Which is why I love the last stanza about holding the mirror to the door. Neither I nor Donna asked to become “big names” to any degree.

Donna was trying to figure out why she was different, she’d heard she had been called autistic as a child, so she wrote her autobiography, brought it in to a specialist, dumped it on his desk, asked him if it meant she was autistic, and planned to kill herself the next day. She was eventually persuaded to publish the autobiography before she understood what publishing really meant and how many people would read it. It became a bestseller, the first bestseller by an (openly) autistic person. And then she was being brought on publicity tours where people expected her to have daily living skills she didn’t have, so she was 26 years old, in a foreign country, and about to pass out in her hotel room because she didn’t know how to obtain food and eat it (or even know that she was supposed to eat) without some form of assistance.

In my case, I was writing and making videos, but I didn’t understand how many people were reading them or what effect they were having on people. First, autistic people started calling me a leader and expecting me to behave more like one. I did make a few concessions to that after I flamed someone in public and was told “People will take you more seriously because they see you as a leader, so you’ve just made that guy’s life a lot harder for him because people will follow you and emulate you and see him as bad because you flamed him.” I’ve tried to be more careful since then because even if I never chose the role of leader, if I’ve been put in that role there are responsibilities.

But then years later, people started talking about “when you get famous” as if it was an inevitability. My stalkers threatened to “out me as a fraud” (i.e. reveal “secrets” about me that I’d never kept hidden in the first place, such as that I used to talk and was considered gifted for about eight years of my life before my IQ dropped too low for that) if I “ever became famous”. I thought they were being silly. A couple weeks later, CNN and Wired Magazine were both contacting me wanting interviews, and CNN in particular wasn’t taking no thank you for an answer. So I thought, what the hell, this will be exposure for the autistic community, I’ll bite the bullet and do it even though I’m scared shitless. And then I was turned into an LFA supercrip story and you probably know the rest.

But people blame you for what the media says about you. If the media gets something wrong, you must’ve lied to them, even if there’s actual video evidence kicking around somewhere, wherever they put the interview takes they don’t use. And people expect you to be 100% perfect 100% of the time. And these are not realistic expectations to have of anyone, no matter how famous they are. This is another reason I liked the Harry Potter series so much, is because it dealt with the dark side of fame really well. And it dealt with the fact that you could become famous without ever intending to, and then people would assume that you “liked the attention” and that anything further you did was to “get more attention from the press”.

I have a place in my heart for real celebrities. It does not surprise me that the level of alcohol and drug abuse among celebrities is astronomical. It’s not because they’re rich enough to afford all the “good” drugs, and it’s not even that there are doctors who will prescribe them drugs they don’t need to feed their addictions. Poor addicts exist too, they just have to do much worse stuff to get the money for drugs, like sleeping with people in exchange for drugs. But the reason so many celebrities have drug and alcohol habits is because the amount of pressure and stress and unrealistic expectations they have to deal with are as astronomical as their drug abuse. It’s very hard to stay sane under those conditions. Oh and the number one unrealistic expectation of celebrity is that it’s always fun, all the time, that everyone who has it must have sought it out, and that when celebrities complain about the nasty side-effects of fame then they’re just trying to rub other people’s noses in the fact that they’re famous.

No. Not true at all Some people do set out to be famous, very few of them are prepared for the reality. Clara Bow is one of my favorite examples. She was a silent movie star who had wanted nothing more since childhood than to become an actress and leave behind the poverty and abuse she was dealing with at home. She became an extremely good actress, both on and off the stage, as it were. But when the consequences of fame hit her, she couldn’t deal with it, and ended up in a mental institution for awhile, and spent the rest of her life as a recluse so nobody would bother her again.

That’s a not uncommon story in people who’ve sought out fame. People like me and Donna on the other hand, both became “famous” (she became actually famous, I became 15-minutes famous) at almost exactly the same age. And our development age-wise has similar enough parallels that I am pretty sure I know how little she knew about the big world out there that would want to chomp her up and eat her alive. I certainly didn’t. I thought a few people watched my videos and read my blog, but they were invisible to me and I liked it that way. I wanted my ideas to get out there, but I didn’t want my self to get out there, if that makes any sense.

And when you’re a mid-twenties autistic person, with more giant gaps in your comprehension of the world than the vast majority of online autistics who are reading your work, and suddenly you become famous? Suddenly there are people in countries you’ve never even heard of, who know your name and what they believe to be your story.. I will be forever grateful to Andrea Shettle for helping me field questions from parents when my blog was flooded after ‘CNN. She seemed to know I couldn’t handle it, so when they asked questions, she’d point them to relevant, already-existing blog entries that answered their questions.

But people most of all expect you to be perfect in a way that nobody is perfect. They are never prepared for the fact that you “fart and belch and swear”, so to speak – either literally or figuratively. And for both Donna and me, that linen is 100% literal. And “I might just smell the cutlery”, I love that line too, because people also expect you to behave like a “high functioning” person, and get confused and angry when you do things out of line with that.

Donna was once given a present, which she loved, it was all these beautiful pieces of string, so she unwove them and lined them up and loved the present very much, only to discover the present was a tapestry and the strings were all those nice colors so that they could show a picture. I don’t think the gift-giver was impressed with Donna’s treatment of her gift, even though she should’ve expected something of the like from an autistic woman who was both far more severely disabled than she looked (to people who don’t know what to look for – I can clearly see her as someone whose ability to function in many areas is impressive but propped up on flimsy stilts waiting to be knocked over, and then huge gaps in her functioning that nobody notices because they see one area of competence and fill in all the gaps with more competence), and had massive visual processing problems.

And that fact of being expected to be less severely disabled by autism than you actually are, really bites you in the ass if you become famous. Because then, if you make a social gaffe, you’re just rude, not disabled And if you can’t function, nobody notices. Or they think it can’t be that bad… I remember someone autistic telling me that Donna “exaggerates for the press”, because she couldn’t fathom someone with Donna’s achievements also being severely disabled in other areas. I was presented in the news as LFA, but even so, people still had this expectation that I should be able to understand and do all these things I couldn’t understand or do. Including an autistic man who had made media studies his major in college, and was furious with me. He believed that I understood what the media would do to me, and that i’d stepped into their supercrip-LFA role intentionally. I had to remind him that not all of us understand the media at all, especially autistic people, and that I sure as hell didn’t ask for any of this.

But the autistic community in particular seems almost obsessed with tearing down its “celebrities”. Appear in the news and every word, every movement (if on TV), will be scrutinized. I remember people saying that it was odd that I didn’t pause to think before answering questions! This was on television! Even I know that they edit things, especially when pressed for time. And people scrutinizing the changes in my eyes from “spaced out’ to "focused” and back again, as proof that one or the other was faked, rather than that when my vision was turned off I looked spaced out, and when I turned it on to look at stuff, suddenly my eyes looked more focused. But no, to them it was “sie can’t hold onto that blank autistic stare for very long at all, can sie?” I had people pausing my videos every few seconds to micro-analyze my body language, I had people looking at objects in the background of my videos to find supposedly-incriminating evidence, I mea who does this?

The autistic community, that’s who. Many people in that community want every autistic person who makes the news to “represent autism” perfectly. Donna wasn’t good enough because she had DID and a childhood history of severe abuse. Tom McKean wasn’t good enough because he hears voices (and unfortunately Donna was one of the people who tore him down for that at one point). Temple Grandin was too rich. And – you’d have to see this to believe it – I was both too high functioning and too low functioning to represent autism, depending on which autistic person you asked. And I never asked to represent autism at all. I took great pains to explain that this was just me and that others were different, and to point them at the writing of people who were very different from me. The media people weren’t interested, though.

The only time I see a certain amount of scrutiny as justified, is scrutiny of what the person actually promotes in terms of ideas. But even there you have to be careful – did the person really say this or is the media taking things out of context or puttting words intheir mouth? It happens all the time. I’ve even had Sandra Radisch’s words quoted as my own in a newspaper article, meanwhile CNN lifted words straight from Sue Rubin to “explain” my viral video. And that’s when they’re not just making up words altogether and putting them in your mouth. Never trust what a newspaper quotes someone as saying, unless you can verify those as the actual viewpoints of the person.

Case in point: Temple Grandin. For years, promoted the idea that autistic people were all visual thinkers. Tried to claim that Tito Mukhopadhyay wasn’t autistic because he was an auditory thinker whose own systems forfeits had made him functionally blind a lot of the time. And because he was “low functioning” but clearly highly language-oriented, more so than many “aspies”. She finally accepts that not all autistic people aare visual thinkers, but it took years of persuasion and her current model of autistic thought is almost as narrow

But the real problem people havewith heris that she proomotes the idea that HFA people are usefukl and LFA peopl are useless. She has also said some really bigoted things about people with Williams syndrome. AAnd all of this was within her own writing, not just the media quoting her outof context. She’s in a position of extreme influence and she does have a responsibility not to ppass on hher views like that. And tthat’s tthe only context wwhere SSOME scrutiny doesn’t bother me. Emphasis on SOME.

(Sorry my keyboard is malfunctioning badly.)

TL;DR: Famous autistic people are held to unrealistic expectations and this hurts everyone.

Notes: