If the people who think I do my activism for fame...
…knew how much I’ve turned down. (Don’t worry, this has the most concise TL;DR at the end I’ve ever made if you want to skip the post.)
Several people wanted the rights to my life story for film.
I’ve lost count of the number of film festivals that begged me to enter “In My Language,” and I didn’t, because exposure anxiety was too great already and I was near collapse.
The film crew that came all the way from Russia, and banged on my door as if they were trying to knock it down, rattling the lock, trying to get in, while I hid too terrified to breathe. They thought sending a message to a Youtube account whose messages I never check, and not getting a response, was sufficient permission to trespass on the grounds of my building. (They had to be thrown out three or four times and finally had management threaten to call the cops. And they were running around asking people questions about me.)
The huge number of speaking engagements I’ve turned down. For every one I accepted there must be ten I turned down.
I will talk to the media in rare occurrences where I think there’s more good to come from it than harm. Sometimes I’m dead wrong about that, sometimes I’m right, but there’s also a cost-benefit analysis. And it always costs me in privacy, in accuracy, in that horrible feeling that I’m a tiny animal trapped under an enormous eye that I can’t get away from that’s staring at me.
My dream would be to be unknown, totally unknown, to everyone except a few friends. My writing would possibly be known, but nobody would connect me to that writing in the way they do. They would read the writing, watch the videos, but not seek out the person who made them or become curious about me. I would live in a tiny redwood mountain town with a tiny number of friends who maybe all helped each other out so that we didn’t need services, although I’ve seen such situations go sour so often that this is no more than a pipe dream for me.
Or services in the redwoods would be better and I could live there and get those services and not have to worry about PTSD triggers like having a case manager in the DD system who briefly worked with me in the psych system and quickly tried to tell everyone she was an expert on me and knew me really well even though the extent of her involvement in my life was driving me home from a rec program a couple times. But she had no conscience so a few lies never hurt her here and there, they just hurt everyone she came into contact with. And living in the redwoods would mean living uncomfortably close to places I’ve been badly abused, such as institutions, and that would make my PTSD worse. My PTSD got instantly 75% better moving into exile.
But anyway my dream is to live in some tiny place near (or possibly rooming with one or two and sharing support staff) only people I care about and who care about me. Fame has no place in this dream. Fame, even the fifteen minute variety, is a necessary evil. Publicity is a necessary evil. I’ve been told that running from necessary publicity is just as egotistical as seeking out unnecessary publicity, and I freely admit this is one of my big faults as an activist: I hate publicity and would run from it if I could.
I know, I know, I live my life on the Internet, and that’s public. But it’s a different kind of public. And practically everyone my age (late Gen X, early Gen Y) does it these days. It’s just how many people live our lives, and it’s a godsend for those of us who are housebound, bedridden, or otherwise isolated from the rest of the world. I build my tiny group of friends on places like tumblr instead of places offline.
I have webmuskie, feliscorvus, codeman38, alliecat-person, fullyarticulatedgoldskeleton, okideas, amorpha-system, clatterbane, bittersnurr, natalunasans, soilrockslove, and madeofpatterns, just off the top of my head, all here on tumblr with me. That doesn’t mean other people aren’t my friends or acquaintances here or that I don’t value the relationships, remember I routinely forget my best friends exists so coming up with a list is daunting. But these are mutuals I definitely feel a bond with, and that I’m always afraid I’ll break the bond by disappearing and forgetting people exist. Tumblr helps me remember who exists.
I was so happy when okideas and natalunasans joined tumblr because they were people I’d known forever and cared about but not been able to remember or keep up with and felt guilty when i did think of them. okideas was part of the disability studies group where we “stole fire” from the academics who wouldn’t have let us into their classes on disability studies for various reasons (too uneducated, too sick, too low IQ, too autistic) so we made our own disability studies. I still miss that group. Natalunasans i met during the Autistic Liberation Front days on Second Life, back when it didn’t give me migraines and sap my energy to go there. She was wonderful and rapidly became a co-moderator of our group. She is generous and funny and all-around amazing.
And I wish we all lived in one place. Like not a commune, just like, we all lived in separate buildings within walking or wheelchair of each other. Never going to happen, but that’s my dream: A private life filled with people I care about. i am such the Hufflepuff at heart.
But I’m Gryffindor enough to stand in the spotliight when I have to. When I have to. Gryffindors strike me as people who’d want to do it, but that’s never been me. Even when I did all my performances as a child it was never about the audience, it was about doing something I enjoyed that happened to be on a stage. (I was a naive kid. Still am in many ways.)
But if people knew the offers I’ve turned down, they’d never call me a publicity-seeker again. I’ve had film festivals all over the world contact me, wanting to display my work or enter it in competitions. Then there were the offers of book deals.
In other words, I have not been in any shortage of ways to increase my publicity, and I have turned down nearly every one. You would not believe some of the offers I’ve gotten. But I’m not that kind of person. I’m not better than that kind of person, mind you — the flipside of ego is still ego. But one thing I’m not is a publicity-hound. Anyone who thinks I am should understand that I only say yes to one out of every twenty or so offers I get, and that may be a generous estimate. And I always do it for the good of the community, not for myself alone, whether that comes through in the finished product or not.
(Too many times, the finished product is an awestruck but totally inaccurate synopsis of my life. What annoys me about that is I spend a lot of effort telling them things like “I used to be able to talk,” only for them to treat me like I’ve been nonverbal my whole life, and then people read it and either think I’ve been nonverbal my whole life, or, if they know the truth, think I lied to the reporters. Lots of things like that happen. And often the focus is more on me than on the communities I’ve tried to focus on in answering my questions. My least favorite one was when I told CNN very clearly that I made “In My Language” for Ashley X, and they said very clearly in their broadcast that I made it “to bring people into my world of autism”. Which sounds more like a Sue Rubin quote than anything I’d ever say in a million years. I guess Ashley X was too political? She’s right there in the dedication. I still remember this guy who responded to IML by saying “It’s a great video, but why’d you have to dedicate it to Ashley X? That ruins the whole thing.”)
Anyway, I was just musing tonight on the number of ways I could have become a lot more famous if I’d wanted to, and the number of people I ignored or turned down because I couldn’t stand the feeling of being watched by the whole world. Like even when my video went viral, I found myself hiding under the desk and poking my head out now and then to check the number of viewers, which kept spiraling upwards. The weird thing was that everyone else, including especially my stalkers, seemed to predict that I’d “get famous soon”, and it totally blindsided me when the media came knocking on my door. I still don’t think what I am really constitutes famous, unless you mean 15 minutes of fame. But it’s big fish in a small pond. Or at least it was, for awhile. I’m not sure if I’m fading into the background with the rest of the old guard of the autistic community.
Anyway, the above is my actual relationship to fame, the stuff people didn’t see, precisely because I didn’t say yes to it. I said no to far more than I said yes to. And I only said yes when I thought some good would come of it. I was so disappointed when CNN promised they’d show more of the autistic community, did all these interviews of people at a conference, then focused entirely on me, and everyone else if they were mentioned at all were people who were “inspired by me”. It made all of us feel betrayed, and I think some of them felt I’d betrayed them since I brought CNN there, but I felt more betrayed than anyone. I knew the amount of work it took people to give their time and effort to interviews, especially people for whom typing is a grueling, super-slow, and exhausting practice. And some of these people were people they could have got excellent quotes from, probably did get excellent quotes from. I’d hoped they’d show a vibrant and interesting autistic community, but instead they mostly showed me moving through that community. Including me having a screaming head-banging meltdown in the bathroom (they held the boom mic up to the bathroom door, no privacy) after they changed my presentation partner on me to someone who believed wholeheartedly in guardianship and spent her entire presentation Not Like My Childing me. (Instead of the partner I was supposed to have, a severely disabled man with no guardian, and he and I were supposed to talk about how to avoid guardianship.)
Anyway… yet another tangent, but this is why I don’t like dealing with the media. The media had their part in making it sound like the world revolved around me, and a lot of people who don’t know how the media works, assumed I was the one deliberately giving that impression.
After that experience, I rarely fault an autistic person for what the media says about them. Because the autistic person may have said entirely political things and been twisted into inspiration porn or a sob story. And the media misquotes people all the time, or puts words in their mouths. Sometimes they even quote one person as saying what someone else said, and then people think the first person must have stolen their words from the second person, when it was the writer who did that. So don’t ever trust too heavily in what the media has to say about autistic people. And don’t ever tear down an autistic person because of a media portrayal. Autistic people tend not to be media-savvy and we fall right into this stuff. I was told by some autistic people I “should have known better”, but that’s more of that “I think you’re smart, so you can’t possibly have gaps in your knowledge about the world” thing. I knew nothing of how fictional media representations are until I was involved in them. Even news stories will do multiple takes to get just the right shot of your staff walking out the door saying goodbye.
I have to say, by the way that the most respectful and accurate portrayal I got was done by the CBC. They weren’t perfect (and their montage of my staff person cleaning up the house made it look like she did nothing but clean) but they really tried to listen to me and the other autistic people they interviewed. And they tried to present our side of things as fairly and accurately as they possibly could. They were the last people I worked with before I swore off of media for awhile. And if it hadn’t been that I was just recovering from a major health crash (the adrenal insufficiency/myasthenia clusterfuck of 2008) and was trying to pass as more able-bodied than I was (for fear of seeming vulnerable in front of my stalkers), it would’ve been an outright enjoyable experience. They were nice, they were physically unobtrusive (unlike Sanjay Gupta, who tried to be nice but had no concept of personal space and burned me out badly by leaning in so close to me that the sound lady said she was picking up his words in my microphone… then he wondered why I was rocking and avoiding eye contact). They were just good people, especially for media. I don’t know if all of the CBC is like that but I’d recommend them if they are.
Anyway I have far too much exposure anxiety to feel comfortable with media exposure or fame. Any venture I make into that territory is something I pay a price for. When CNN came I barely ate for weeks (not that anyone notices when a fat person loses hir appetite). So any time I’m in the media, it’s because I’ve taken a calculated risk for some greater good that I hope comes out of it. With CNN it was exposure for the autistic community and our ideas about autism — only mildly mildly successful in accomplishing that, turned into a supercrip (superautie?) whose only contribution to the autistic community is to inspire others to look up to me. At one point D. J. Savarese and I were clearly writing about political organizing on Skype, and somehow they tried to twist that into inspiration porn too even though you could hear our computerized voices in the background talking about political organizing to tell our own stories. After our experience with the media, D.J. and I agree that telling our own stories is more necessary than ever, having control of our own stories, not the media, not professionals, not parents, just us.
TL;DR: I have turned down more opportunities, by far, for publicity, than I have ever, ever accepted. Make of that what you will.