5:01am June 3, 2015

Oh and on the topic of cyberbullying…

…one thing I get a lot of at times, and not at all other times, but it always irritates the crap out of me, is people asking me personal questions about my personal life based on things I wrote between 5 and 15 years ago. Particularly the people who page through everything I’ve ever written looking for “discrepancies” and then ask supposedly innocent questions that are clearly intended to “expose discrepancies” at worst and satisfy their curiosity about supposed discrepancies at best.

Like the person who basically said, in an ask that may or may not have been anon I don’t remember, but it’s a good example: “On your old website it said you cut your hair short because you wouldn’t be able to rip it out that way, and now you have long hair. Do you still pull your hair out? What made you decide to grow your hair out again? Why is it not a problem for you now if it was a problem for you back then?”

More about cyberbullying and my history with it and why this question is more than a question, under the cut:

Well first off… when I was 22, I still hit people, including my closest friends. I feel horrible about it now. I don’t it people anymore. I don’t throw things at people anymore. I don’t bang my head anymore. I don’t pull my hair out anymore. I don’t self-injure, in fact, in any way, anymore. I think I could be provoked into self-injury (hair-pulling or head-banging or skin-scratching-with-nails, most likely, because all of those are immediately accessible in a crisis unlike cutting which I never really got into because it would require time and effort and doing things) in very extreme circumstances still, but it would take something extreme. I can’t remember the last time it happened. Literally can’t remember. I can remember times it happened, and the last big time it happened, but not the last time.

I don’t do those things anymore because I have spent my entire adult life putting all of my energy into recovering from my highly fucked up childhood. I am not the same at 34 as I was at 22, or even at 26 or 27 when I wrote the website in question.

And when I wrote that fucking website? It was a PARODY. Of an Autism Society of America website with a similar name and similarly tragic-looking black and white photos (stock photos, I found out, not even real autistic people – stock photos with words like “broken family” on them as keywords, really nice stuff to show autism with). People since then have totally lost the fucking context and think that was my personal website or something.

That was more like my personal declaration that I’d had enough of being misrepresented and I wanted to represent myself and other autistic people. I wanted to show the discrepancy between who we really were and how we are represented by others. So the first half of the website contained entirely statements that had been made across the years by others. Including “We should have her cut all her hair off so that she doesn’t pull it out.” Which became some weird-ass point of contention between different people who decided I had other motivations for cutting my hair – ooh, scary, other motivations, like anyone has only one motivation for doing anything. That’s fucking sarcasm if you can’t recognize it.

And yes there were visible bald spots, when my head was shaved, that I hadn’t even been aware of when my hair was longer, because my hair is so thick. and we eventually realized that they were in the spots where I had pulled my hair out the most as a teenager. As an adult I still ripped my hair out sometimes but not nearly as often. Cutting it short helped, yes, but it wasn’t the only reason I cut it short. I also liked the ease of care (especially when I had no services, I had my mom cut it really short before shaving it entirely because I was very weak from the probable onset of myasthenia gravis, and couldn’t take care of myself at all let alone my hair). I also liked the aesthetic, especially when I would get a flat-top instead of just purely shaving it. I liked running my fingers over the flat-top and feeling it be fuzzy and sticky-up-y, I was constantly stimming on my own head when my hair was short and fuzzy.

But I’m also faceblind. And I recognize people largely by hair. And I’d had long hair my whole life. And eventually I had trouble recognizing myself in the mirror, and decided to see how long I could grow out my hair. Now it’s almost to my butt. I have not ripped any of it out, except for pulling an early white hair out for complicated symbolic keepsake purposes.

I like having hair. I like how it looks, I like how it feels, I don’t like taking care of it but I’m willing to do so for the sake of having it. I liked having no hair, too. But I think I like having hair more. It feels right for right now, just like shaving it felt right at the time. They’e different, they both have their pros and cons.

And isn’t “It felt right at the time” the only reason anyone needs to make decisions about something like hairstyle!?!? How can you even dehumanize someone enough to feel like you have the right to demand answers to why they changed their hair over something as stupid as a parody site written years before they changed their hair?

Especially when the part of the parody site you were looking at is the part where they’re being described from the outside and dehumanized as if they are a thing more than a person, a symbolic “autistic retard” not a human being. Everything I put on that front part of the site was things other people have said about me, true or not. But all of them have absolutely been said, most more than once.

Then in the middle of the site, I turn and face the camera instead of looking away from it, and I have a series of t-shirts and signs that proclaim my actual views.

And then after that, as the website goes on, i try to include quotes by a number of other autistic people who have been dehumanized in this way, while also describing my own actual life, and scenarios drawn loosely from the lives of both me and other real autistic people I’ve known (but not close enough to identify anyone who didn’t want to be identified). Not all of my life, mind you, just the parts that pertain to the issues at hand, and I have every right to pick and choose which parts of my life are public and which parts are private. And then I’m saying why all the people from the first part and their attitudes about me are wrong.

Somehow people got the idea that every single word on the site was meant to be the gospel truth about my life and that the parts of my life I chose to share on the site (which are mostly the parts that get pathologized, not the parts that get me seen as capable, because the ASA site was all about pathologizing people and turning them into tragic figures, not showing their capabilities).

And then I get asks demanding to know why I grew my hair out in my thirties when in my mid twenties I made one comment, taken from things other people had said about me (and from a side-benefit of having super-short hair), about pulling my hair out and cutting hair short to keep from pulling it out. Yes, cutting it short did in fact make it impossible to pull it out, but in the meantime I was learning not to pull it out in the first place.

You think developmentally disabled people don’t ever grow and learn? You think if we self-injure at one point in our lives we’ll always be stuck doing it forever? You think “violent autistic person” or “self-injurious autistic person” is a type of autistic person that you either are or you aren’t, and you either are or you aren’t forever? Because unless you think something along those lines, somewhere in your head, whether you know it or not… I just can’t see where you get this shit?

Like why do you think this is an okay question to ask me?

I’m not looking for an apology, I’m not even looking for an explanation, or for any more interaction with you over this, because I’m mostly asking these questions for your benefit. If you’re the sort of person who asks people questions like this, ask yourself why, ask yourself how you would feel being asked questions like that after being targeted for mass cyberbullying for years over similar things that were “just innocent questions” but really weren’t ever innocent anything. Ask yourself why your desire to know why I grew my hair out when 6-8 years ago I talked about pulling hair out (seriously do you know how much a person can change in 6 months? let alone 6-8 years?), trumps my need to feel like people aren’t reading my life like it’s some kind of celebrity gossip column.

And yes, I feel horrible for celebrities and I don’t know how they do it. I feel worse for the ones who have become punchlines, their names have literally become punchlines in the media and on the Internet, how do they cope with that? How can they possibly cope with that? I don’t care how rich some of them are, or how famous some of them are, that sucks. And being rich and famous does not make up for it or make it okay to treat human beings like jokes. Because they are still human beings even if everything you read tells you they’re something else, something hateable and teasable and an acceptable target.

I may not be a celebrity (although some people with no sense of proportion call me that because I was on the news a couple times, do you know how many private citizens are on the news a couple times? come on…) but I have become a punchline to some people, and it fucking sucks. Public humiliation sucks. And public interrogation was a huge, huge part of my cyberbullying and resulting public humiliation.

I never want to see anyone go through that, I don’t care who they are or what they’ve done, you can’t do that to another human being without harming them and harming yourself even worse. And the ways you harm yourself are often invisible to you, but you’re ripping yourself apart from the love and compassion that is at the center of everything that matters in life. And that creates a kind of wound in who you are, and if you can’t see that you are wounding yourself by participating in this sort of thing, believe me, you are. You may not be the one driven to suicide by it, but when you die… you may find yourself looking back on your life and going “oh shit, what kind of a person was I?”

In the TED talk I saw, Monica Lewinsky said every time we click on a piece of celebrity gossip or cyberbullying crap, we’re desensitizing ourselves. I think that’s another word for putting a barrier between ourselves and love. And we don’t want a barrier between ourselves and love, not if any of us want… anything good out of life at all? Love and compassion, as put into concrete actions, are the answers to these problems, she was right about that too.

But seriously. I don’t mind being asked certain questions. But there’s a way of asking the questions where I feel like there’s a lot more behind the question than the question itself.

Oh and by the way about those contradictions people search for?

People grow and change with time.

What we believe – what we convince ourselves to believe, too, even if we don’t quite believe it – changes. What we do changes.

I’m not allowed to change, according to cyberbullies.

I used to walk and talk so I must have been lying about needing a wheelchair and a communication device. I never hid the fact that I used to walk and talk, in fact I talked about it relatively frequently. Even now I occasionally have some useful speech but it’s so rare as to be essentially meaningless, and it only happens when I’m delirious. (Not unprecedented in autism, there are many parents who report their children only talk when they have high enough fevers. It’s something about the way illness affects the brain. When this happens, I lose almost all my other abilities because my brain has to put so many resources into talking, that’s why it’s generally impossible if my brain is even halfway sane.) I don’t believe in verbal and nonverbal people for the most part, I believe in maybe 1% verbal to 99% verbal, or 5% verbal to 95% verbal, or something along those lines. I’m closer to the 1-5% range at this point in my life, I’ve never been 95% but I’ve been much higher than this, maybe 80%? Although my speech wasn’t always communicative either so it’s complicated.

Nobody likes complicated.

Nobody likes the fact that if you dig hard enough into anyone’s life, you will find “contradiction” after “contradiction” for two big reasons: One, people are complicated and contradictory and change a lot over time. Two, what looks like contradictions aren’t necessarily contradictions, they’re actually things that simply look like contradictions because you’re looking at the world through an almost lawyer-like degree of intellectual precision that doesn’t actually work on real people in the real world. Only targets of cyberbullying seem to be singled out for everyooe looking for so-called “contradictions”, other people, including the bullies, are allowed to be as contradictory as they want. Like real contradictions, contradictions that expose them as lying in order to slander or libel people.

One time my bullies decided to claim that their reports about me “would have no contradictions in them whatsoever”. Fact-checkers actually laughed when they heard that. Because contradictions always exist in genuine accounts of events, as seen by different people, or even the same person at different times in their life. When someone’s story is too carefully non-contradictory it’s a potential sign they’re either lying, or so afraid of being accused of lying that they do things that will look like lying even though it’s out of fear. But bullies aren’t doing this out of fear, they’re doing it out of a gleeful desire to humiliate and destroy people. So be cautious when you talk to anyone who claims that there are no contradictions at all in their life or their retelling of events or whatever, that is a very rare thing once you get beyod a really small quantity of information.

Anyway… please don’t pick through my life and ask personal questions based on picking through things I wrote ages ago and thinking you have some kind of right to answers. It’s not that I’m hiding anything about my hair, it’s just the principle of the thing, if you have good intentions towards someone you don’t generally demand information like “Why did you get a new haircut if you used to pull your hair out according to something you wrote years ago that I’ve clearly misunderstood in a pretty extreme way to begin with, and am going over with a fine-toothed comb for reasons that probably make little sense?”

And no, I’m not overreacting to people “just asking questions”. When people see you as a public person they start thinking they have some right, some entitlement, to any information out of you no matter how personal it is and no matter how sketchy their reasons for asking seem. And when you get that a lot, you get wary of questions that seem, well, sketchy. And that question felt that way to me, it didn’t feel as innocent as it might havelooked to other people. People who care about me might ask why I grew my hair out, but they don’t try and correlate it back to an old, defunct parody website.

Oh the other thing about that website? I was never meant to be the only autistic person on it. I just couldn’t find anyone else willing to stick their neck out. So I stuck my neck out. And got it chopped off but good as a consequence. But that’s what I do, sometimes. I take those chances.

Anyway I’m not trying to make everyone petrified of using my askbox, and I certainly don’t want a lot of asks beginning with “I hope this isn’t offfensive to you and [goes on for most of the ask about fear of me getting mad at them basically]. It’s more like… before you ask me something, think about how you’d feel if everyone was asking you that question. Think about whether you’re asking me out of genuine curiosity, or whether you just want to make sure I’m “legit” – because I’m through with being tested and potentially found wanting by people who don’t even truly know me. I’m not truly a celebrity, but even if I was, I have done nothing to deserve that kind of thing. Nothing. The only thing I’m “guilty” of, if anything, is being a fallible human being whose fallibilities (whether real or made-up) have been collected and ampplified by online cyberbullies.

Imagine that happened to you. Imagine your most embarrassing or humilating moments. Imagine they happened online where anyone could find them forever. Imagine that for reasons that make absolutely no sense, some bullies you haven’t even spoken to since you were practically a child yourself, have come back and decided to show everyone those humiliating moments, and that they’ve put a spin on them that makes you look like you’ve done something awful – if not truly awful, then at least awful by the standards of most people’s social radar.

So that people shun you or stalk you or treat you like shit just for the hell of it even when they don’t know you. So that people are made to hate or fear you before they can get to know you for real. So that everyone feels they have some gods-given right to “having an opinion on the matter of [insert your full name here, always your full name, helps with Google rankings too, future employers will find pages about you being a fraud that, if you’re lucky, are the first Google pages on you after your homepage, and if you’re not lucky, are just the first google pages on you period]”.

People may even contact your employers trying to get you fired, especially if the manufactured controversy has anything to do with the subject of your employment. (Yes, they contacted my boss at MIT. Fortunately she already knew my family so she knew I was for real. But they basically harassed anyone at MIT remotely connected with me, they even harassed Oliver Sacks – because I’d once spoken to him for all of five minutes at an MIT function – until he said “stop sending me this crap” basically, in a more genteel way though.)

And that part of this has always involved finding the (real or false but merely perceived by others, because their perceptions are skewed by all kinds of things, including sheer misunderstanding, manufactured controversies, etc.) “contradictions” in your life, the contradictions that would both exist and appear to exist in anyone’s life if you poked around the right places hard enough. And asking “innocent questions” that are far from innocent, and if you react to their lack of innocence (which may or may not be something the person asking is consciously aware of, but they’re still not innocent at the core) people treat you like you’re paranoid and overreacting. Rather than like you’ve seen enough to know that when someone starts demanding to understand why you’ve seemingly contradicted yourself, then they’ve already long since headed down a road that you don’t want to go down anymore. With anyone.

Like if the question were merely asked as a question, it’d be one thing. I would not have written this post if someone asked, “I noticed you grew your hair out, any idea what made you decide to make such a big change from your previous hairstyle? I’m not sure I could do it.” Then as long as they weren’t merely trying to make a non-innocent question look more innocent (and I can sometimes feel something behind the question when people do that, so don’t think sneakiness will always work on me) t would be TOTALLY different in how I was responding to it. I would not have written this post. But “You changed your hairstyle. In 2007 you wrote that you had your hair short because you said you pulled your hair out. Was that true? What made you grow your hair out if that was true?” That kind of thing is not innocent whether the person asking knows that consciously or not. That kind of thing is too close to celebrity gossip culture. It doesn’t matter that I’m not a true celebrity, it’s still the same phenomenon.

And while you’re at it, rethink how you think of celebrities. How you probably expect them to be less human, more perfect, than anyone is capable of being. How their worst days are captured on film and broadcast to the entire world online and off. How every mistake is amplified and analyzed to death on celebrity gossip websites. How people who have never even met them, feel they have a right to an opinion on them as a person. Yes, some of them abuse power, and that has to be dealt with, but the bulk of the way people treat celebrities is not about that at all. People can pretend they’re being righteous when they’re just gossiping about celebrities like everyone else.

I am in awe of celebrities who don’t develop drug and alcohol problems, suicidal thoughts, or other serious emotional problems as a result of celebrity gossip culture, the paparazzi, etc. I am in awe of celebrities who do develop those problems but manage to survive them. It takes serious effort to stay sane when the world has its spotlight on you 24/7.

And again, when all else fails: Pretend it’s you.

Pretend that someone, somewhere has put together a lot of misinformation on you. About half of the misinformation is outright lies, but the other misinformation is carefully selected truths and half-truths, carefully cherry-picked and spin-doctored to fit the rest of the misinformation. Pretend this has all been posted online in the communities that are most important to you, and that you are losing friends and access to those communities because your bullies and stalkers are being taken seriously by people who don’t even understand how badly they’re being manipulated – also by anyone hwo has ever disliked you for any reason, now they have an excuse to act righteous while disliking you, and few of them can resist that temptation.

And if after imagining all this, you still think your question would be taken by me as innocent, ask it. If you think you’re prying or succumbing to gossip or to the almost lawyer-like (in a bad way, people are not meant to act like lawyers in everyday innocent conversations) desire for a total lack of “contradiction” in my words and actions over a very large span of time…. then don’t ask at all, keep it to yourself. And whatever you do, don’t think that prefacing your ask with a long explanation of how you don’t mean to pry, helps me in any way – whether you’re actually prying or not, those long “I’m really not trying to hurt you and i’m afraid you’ll be mad and I’m not trying to make you mad and I swear this question is meant in good faith and etc.’ sorts of introductions just tell me you’re really nervous, and make respondiing difficult and socially awkward. And I’m socially awkward enough without that. So ask or don’t ask, but don’t try to describe your insecurity about asking, in intimate detail, because it doesn’t help me see you’re innocent, it just makes me see you’re nervous, and makes me feel awkward replying.

If you’ve read this far and truly taken what I said to heart, thank you so much. People like you often help me cope with the people who are very much not like you. And if you’ve read this far, realized you were caught up in the gossip culture around someone (me or other people), and decidd to chang ehat, thank you so much too. Changes likt that take guts. May you have the guts to change, and then maybe to help others change.