I wrote a version of this once for Sharisa Kochmeister, who was dealing with people trying to publicly erase her existence. But when I write it now, it is intended for anyone dealing with such attempts at erasure. I am writing it because it gets right down to the core of the problem, rather than getting lost in details thrown around by those attempting the erasing, the ones they will try to distract a person with. I am writing it because I know several people right now, Sharisa included, who might need to remember this:

Remember that when they attack someone you are not, they are not attacking you. They are just attacking something they think is you, an illusion in their heads.

It can harm you, because it can make people mistake the illusion for you, and they can act badly towards you based on that. And there is real danger, and I don’t want to downplay that.

But at the same time, they are hacking and biting and tearing and clawing away at a person who doesn’t even exist, someone they dreamed up in their minds. In the larger scheme of things, they can’t touch you, because they can’t even perceive you as you are.

Hate can’t understand love. Hate isn’t an action, it’s a state of mind. People in that state of mind are more thoroughly harmed by the hate they envelop themselves in, than the people they try to attack. Hate pulls a person away from reality. You have to be able to love in order to see who someone really is. A person enveloped in hate can’t do that. So all they are doing is ripping at all sorts of illusions they build up to surround you. You will remain standing even if they shred those to pieces, even if in fear you mistake those pieces for you at times.

I know how hard it is. I also know that when you go through things like this you often find out you’re stronger than you thought you were. Because any strength you have comes from something that nobody who hates you (and I tend to think attempted erasure of a person’s existence is the ultimate hate) can touch or even see.

It comes from the fact that you are a real person and nothing anyone does can change that. You don’t even have to try to exist in order to exist, you just do it automatically. Hate on the other hand takes constant effort, to push oneself away from reality, and to fight against what does exist. Hate will wear a person out. Simple existence will not.

I hope for their sake that the people attacking you learn how destructive hatred is to the person stuck in it. It can happen. I have seen people make that change, it is hard but their lives and the lives of those around them are better for it. But even if they don’t, I know that you will be okay, because you will still be there. You are not the imaginary person they are ripping apart, half plaything and half punching bag, and you are not just words on a screen or an example or symbol of something people have imagined up in their heads. And you never will be. You exist, you are a real person, and nothing can change that.

On a similar topic, you might want to read Cyber Bully by Donna Williams, which contains the excellent advice:

I don’t know where they get the time. It must rob their own families of quality time. And how can they escape that head space of militancy and hatred to really be accessible as parents, friends, brothers, sisters. In the end, their lives are suffering and they don’t even know it. They put so much passion into their cause in going after people, that it gets like a drug to them, and they are probably as available to their own families as an addict is when having a primary relationship with drugs. So as much as its really scary to find anyone pathologically fixating on me, in the end, whatever discomfort they cause me, I know there’s must be greater. Addiction is incredibly hard to live with and when these people think their addiction is their selfhood, they are far from any place of hope. Number 1 rule, no matter how personal they make it, don’t take it personally.

Feminist bloggers in particular, we might need your help on this.

Jerod Poore has now posted sexual pictures of Kassiane Sibley ( http://crazy-meds1.blogspot.com/2007/08/naughty-naughty.html ) without her consent, in fact with her express non-consent, because of whatever dispute they are having. He’d apparently been threatening to post these pictures for awhile.

Please note: There is no excuse in the universe for doing this. Even if what he said were true. Even if the sex were really wholly consensual (which Kassi says it wasn’t). Even if Kassiane were manipulative and horrible and nasty and self-centered person who stole things from him and left his life a mess, there would be no excuse for this. There is no excuse in the world for posting sexual pictures of her without her consent, and even less excuse to post them above her explicit objections.

I don’t want to hear how she “deserved what she got” or whatever and I will not post comments of that nature so don’t even bother. Just as, I don’t care what she’s supposedly done, even if I believed every rumor she would not deserve to die from lack of healthcare and I won’t print stuff that justifies that. (Nor will I print elaborate rehashes of gossip about her.) Right now she’s the one without healthcare, she’s the one with pictures of her naked butt all over the Internet without her consent and with demeaning sexual comments printed about her, and I utterly refuse to justify those two things as “she deserved it” or anything resembling it. Nobody deserves this. “She deserved it” and “She asked for it” are tired old objections that won’t get any airtime here, there’s plenty of other places to post crap like that. If you do post stuff like that, though, I’ll take screenshots and forward it to whoever is handling this legally, so be forewarned.

I know that there are bloggers who read my blog who are far more immersed in the feminist community than I am. (I am still learning about feminism, and agree with much of what I have seen so far, but have not directly been involved in that community at all.) I would urge those who are involved in that community to get the word out through that community. Ditto the autistic community. This is a mess and I don’t know how to solve it. It’s possible to report things to Blogger (and I urge everyone to do so) but this needs to go further than that, this has crossed so many lines it’s not even funny and someone with more experience in these sorts of matters needs to come to Kassi’s aid here. All I can do is post alerts and try to make sure the right people find each other, my skillsets in these areas are frustratingly limited.

This topic came up during the last Autistic Liberation Front meeting. We were discussing the connection of autistic people to the rest of the world, and Laura Tisoncik made a comment — can’t remember quite what — that reduced a lot of the ethical choices we were talking about making, being a choice between love and disconnection. And how there were all kinds of fancy ideologies people could get into and so forth, but this still seemed like a better way to sum things up.

I have a confession to make that might startle some people: I’m not capable of holding a complex ideology — what I call a set of abstract mental widgets all connected to each other in the sky — in my head. If I try, it falls apart rapidly. I can’t sustain it, I can’t even fully build it, and I certainly can’t believe in it. I used to try, because I thought that it was a measure of my stupidity or something that I couldn’t. And my brain turned to mush every time and I got really frustrated and miserable. I’ve since learned that that’s simply not my strong point and there’s no way on earth I could do it and would be better off putting my cognitive resources somewhere more useful.

This is not easy in a world that mostly equates politics and ethics with vast, overarching ideologies, all neatly connected like a giant sculpture in the sky, and no piece possible to be moved because it would bring the rest of the structure down on top of it. Of course, this is also a world that also equates politics with greed, anger, and corruption, and in which many people who do engage in politics all the time (trying to understand various power structures and social systems and how to do something about the bad parts) actually deny that they are political at all because they view politics as something ugly and dirty, something about politicians, rather than about everyday people. So they do politics all the time while denying it to their last breath.

My versions of politics and ethics have to do with taking some really basic, simple values — such as love rather than disconnection — and applying them to situations that I encounter in the real world. The strange thing is, this tends to yield what look like views a lot more complex than you’ll generally see coming out of a complicated string of mental widgets. That’s because of the “real world” part of it — the real world is actually more complicated than any mental widget could ever be, and applying a simple principle or two to the real world yields results a lot more complex-looking (when taken as a whole) than erasing the real world in favor of a complicated (but not as complicated as the real world) mental widget.

But given the circles I tend to run in, I seem to bash into complicated, rigidly-held, abstract mental widgets all the time.

There are people afraid to condemn the Ashley Treatment because it throws some of their “feminist” mental widgets out of whack. Some people have argued that seeing Ashley as a human being is dangerous because of this thing called “abortion rights” which has to have all kinds of arguments behind it (including the inhumanity of human fetuses by virtue of cognitive ability, which has always struck me as one of the stupidest arguments for abortion in the known universe, but anyway) and if we see someone severely cognitively disabled as having personhood then oh my goodness we might have to rethink our definition of humanity and rights and the whole world (or at least Feminism As We Know It) will fall apart. That it’s really only their ideology (not the whole ethical world) that’s likely to fall down under its own weight doesn’t seem to occur to people, and they do this damage control of their mental widgets so they can keep them all neat and lined up and orderly and safe while other people suffer and die as a result. (And people think that I’m the one who’s screwed up for lining up blocks.)

(My favorite posts I’ve seen about Ashley so far, by the way, are all by someone named Thirza, who wrote Growing Up with Sky, Oh Now I’m Really Mad!, and I Am Not Responsible for Your Discomfort. Zilari has also written Ashley X: What People Aren’t Getting which sums a lot of things up.)

The reason I can come up with so many things to say on so many issues, is not because I have a beautiful bunch of mental widgets lined up in my head with all the proper ideas on sexism, racism, classism, ableism, and every other ism out there, lined up neatly and gracefully, preferably in line with a particular overarching academic ideology where you memorize which bits of privilege are which and plug and play and mix and match. I’ve certainly read more than my fair share of “theory” coming from that angle (on more than my fair share of topics), but it’s just not where my head goes when I’m looking at a situation. I just take the situation and try to figure out what’s true within that situation, and write about that.

That method seems a lot easier to me. I don’t have to hold a bunch of things in my head that are not happening in front of me. I don’t have to memorize tons of arcane ideas about how the world works off in word-abstraction-land. I just have to take a look at what’s going on, maybe cross-reference it to various forms of “what has gone on,” or “what is going on elsewhere,” and that tells me most of what I need to know. My head doesn’t have to hold the whole world because the whole world already exists just fine on its own without my head around to make sense of it. It seems, though, that for some people it’s either easier or preferred (it’s hard to tell which) to memorize all the proper mental widgets, and to violently force the world (or at least make a serious attempt) to bend to the shape of the widgets.

This doesn’t mean that people who apply mental widgets this way always get things wrong, or that I and others like me always get things right, or that I always disagree with people who use mental widgets (whether both of us are right or both wrong). We’re all fallible human beings, and sometimes mental widgets can provide a shortcut to the right answer. But overall the mental-widget approach to ethics and politics strikes me as far more violent, hateful, impractical, disconnected, and damaging, even if it’s also aesthetically pretty from a certain standpoint and fits very well into academia.

So, I am political because wrong, evil things happen in the world and I find that the only right thing I can do is insert myself in the right spot to do whatever I can about them. Because politics as far as I’m concerned is about doing what needs to be done about the misuse of power and its effects on people’s lives, not about a specific set of mental widgets or a political party or campaigning or something. I may do what other people call analysis, but I do it by throwing a few really basic ethical principles at a wide and interesting world, not by memorizing bunches of mental widgets and lining them up in the right places. I can be totally lost by people’s tall nets of abstractions built in the sky, and that may make some people think I’m stupid or incapable of “real” political thought, but I think I do just fine closer to the ground, and that from closer to the ground I may even be better equipped to dismantle a lot of the ideas-in-the-sky — such as mental age, to pick a recent example — that seem to trip a lot of others up in their neverending throwing of one set of mental widgets at another to see which one topples first.

I wrote the following a long time ago about this topic, but it still applies:

In towers tall they shout across
Impressions of the ground below
In folly but in certainty
The more they yell the more they know

I tried to build a tower once
I lost myself in winding stairs
That clattered down on top of me
My building skills not up to theirs

I tried to build so many more
They toppled faster with each try
The more I tried to work it out
The more my plans would go awry

And now my feet are on the ground
I feel and smell and see the earth
And now that it’s in front of me
I know what all those words were worth

Basically, I just can’t get all interested in whether this-ism clashes with that-ism or whether under the-other-ism it’s possible to believe such-and-such or whether you need to meld the-other-ism with yet-another-ism to come up with a belief system that can encompass whatever situation is being discussed. While I’m clearly capable of using my brain, there’s one particular kind of intellectual analysis that’s totally beyond me and that seems to set me apart from most people I’ve known who are considered academically brilliant. And that is the one that gives people lots of shiny widgets to bat around in their heads. It’s not just a matter of distaste, it’s a matter of incompatibility with my brain structure or something.

In the end, it’s also the mental-widget approach to politics that convinces a lot of people that they are too simple, dumb, or outright too ethical, to be political, even as they do things that are incredibly important politically. It’s not that intellectual sophistication never has any place in politics, but it’s not a prerequisite for being political, either, and does not have to be used to create ridiculous amounts of rigid mental widgets where anyone who can’t memorize and use them is automatically an Inferior Creature of some kind or someone who will never be able to do anything of importance ethically or politically. (Although the existence of this bias seems like a wonderful example of cognitive ableism in trendy political circles.)

Two nights ago I had a long conversation with a friend.

She was in bed because she’s got a pressure sore forming on her butt. I was lying on a mat on the floor because I couldn’t hold my body upright and think at the same time.

We were talking about the stuff that normally gets called disability, or impairment, or whatever the current term is. The differences in our bodies, that are medicalized, and defined as horrible fates worse than death and so forth.

We were talking about our total lack of fear in the idea of acquiring any particular currently-pathologized condition.

She talked about how “chronic, intractable pain” is an everyday reality for her, and it’s only going to get worse with time. I talked about going twenty years without a diagnosis of chronic pain that resembles central pain in its nature and intensity. I talked about how people who’ve been in much less pain for much shorter periods of time have tried to tell me I don’t understand pain.

I started laughing, because that seems like an absurd idea to me. My friend said, sarcastically, “Oh, but you’re laughing. If you’re laughing, you can’t be in any pain.”

Then we got into migraines. I’ve had one for a few years straight now. My friend said, “It’s documented that people sometimes kill themselves over migraines, so that’s got to be considered one of the nastier forms of pain.”

My friend recently had a knee injury and was unable to get out of her wheelchair at all (normally she can stand for brief periods) without extensive assistance. She talked about how that isn’t a particularly awful thing in and of itself. She also once went through extreme spinal surgery and only got a day’s worth of pain drugs afterwards.

I freeze in place on a regular basis, sometimes to the point where even my eyes are not under my control, right down to pupils staying at a fixed, large size and my eyes not moving at all. I know very well what it’s like to have zero voluntary movement, and total awareness of surroundings, and I’m not afraid of it.

I also know what it’s like to not comprehend anything going on around me, to be unable to form what most people consider thought (although I think their definition is far, far too narrow to encompass all thought), to “lose” extended amounts of time because things were not encoding into memory, to understand things only on a perceptual level with no abstraction or what non-autistic people would call “comprehension” or “cogitation”, to understand things only in the moment and not have a continuous memory going on, to understand bits and pieces of things on bits and pieces of different levels, and so forth. I know what it’s like not to even be able to put together the intent to “understand” things in a relatively typical way, because the knowledge of that intent simply isn’t there, all that “makes sense” is sensation.

I even know what it’s like to have seizures every few seconds. And from the effects of various supposedly “anti”-psychotic drugs, I know what it’s like to hallucinate and lose touch with reality. I know what it’s like to vomit several times a day, or continuously for several hours in a day. I know pain so intense that I can’t move, and can’t think of anything other than pain.

These are things I know. I know them short-term, I know them long-term. I know them as states that I am able to partially exit for certain periods of time, and I know them as states that I am mandated by my body to stay in until they’re over, if ever. I know the extreme fluctuations in all of these areas that I go through daily, and the gradual moving from one area to another that takes place over time. These things are or have been significant parts of my life. My friend and I talked about all these things from my life, and all these things from her life. Between the two of us, we have internal-body experiences that cover a pretty wide range physically and cognitively. Neither of us are afraid of physical or cognitive disability, of pain, of confusion, of immobility, or of illness. We’re not particularly afraid of even the things considered the most devastating.

There are things we both fear, though. And they have nothing to do with the internal experience of any of these things.

I fear being put in an institution, of any kind, whether a large institution, a group home, a nursing home, or a psychiatric ward. I fear boredom because people might assume I’m not there and park me next to a blank wall for years. I fear people not bothering to prevent or treat things like infections and pressure sores. I fear people who claim to love me deciding to kill me to spare me the unendurable suffering they imagine I am experiencing. I fear bad staff. I fear being assumed dead or unconscious when I freeze (this has happened). I fear not being given a workable communication system when one is available. I fear being treated as a non-person.

The trouble a lot of people seem to have, is they can’t distance these legitimate fears, from fears of the state of being itself. They act like the above are a natural consequence of being configured in a certain way, and that the best way to avoid that is to prevent at all costs that configuration, instead of preventing at all costs those things from being able to happen to people.

My friend and I are not afraid to acquire various conditions that are currently pathologized. We’re aware we’re likely to acquire at least some of them within our lifetimes, even if only in old age. We’re afraid of discrimination, including deadly forms of discrimination. The solution here is not to fix our fear or “acknowledge our feelings”, but to fix the problems that cause legitimate fear.

The trouble I have in talking about these things, is that for people who do not adequately separate out how a person is from how they are being treated, this sort of thing often results in responses like “Oh how horrible, I or my child or someone else is in all this danger, this is a horrible horrible fear, how can we fix me or my child or whoever until they won’t be in all this danger?” Wrong answer. Work to fix the danger, or you will have solved nothing at all except temporarily your own emotional state.

The trouble is, people make decisions, including policy decisions, based on these nebulous fears of being disabled, rather than the real and concrete situation that disabled people are treated like crap. People actually believe that their feelings on this are neutral in nature, and of course, since they are feelings, impossible for anyone to validly question. But these feelings come from somewhere, and without looking at disability as a political thing rather than an issue of personal individual suffering and uselessness and whatnot divorced from any context, we will continue to have awful things happening to us all the time, and people will continue to fear becoming like us.

What started the conversation was a person we know offline who has acquired a new condition over the course of the time we have known her. She has always been extreme in both her ableism and her refusal to even contemplate thinking politically about disability, more extreme than most people. Her entire identity has been tied up in the work (paid and unpaid) that she can’t do anymore. And she’s currently mired in some of the worst kinds of self-hatred because she appears to have transferred her bigotry towards disabled people (which she never acknowledged as such, and would probably be insulted by that description, but it’s true) to herself, and is busy thinking of herself as the useless burden on her family that she thinks of disabled people as in general. And she does not even have the solace of understanding disability in a broader sense than her own feelings (that she believes come out of nowhere and are therefore not things she can change), because while she is capable of thinking politically in that way, she fears it and refuses, believing it would make her miserable. There’s nothing I or anyone else can do about this, but I hope one day she’ll realize that the kind of thinking she fears would actually both be closer to reality and make her less miserable and fearful over the long run.

So they’re trying to use genetic engineering to make sure there are fewer autistic people in the world. And they’d do it by offering parents the choice of a female embryo instead of male embryos.

This is stupid. This isn’t autism prevention. It’s boy prevention. If they’d done this, they’d have screened out my brother, who is not autistic. But then they’d have had me, and I am autistic.

But it’s also important to note how people think of things. Preventing autism is in many people’s minds preventing a thing. Preventing a disease. Instead of the reality that autism does not exist separate from autistic people, and it is people (both autistic and non-autistic, since screening out boys is hardly the same as screening out autistic people) who are being prevented here. And being prevented for a reason that has wholly to do with eugenics, the ability to avoid having certain kinds of children altogether. This isn’t about preventing a thing called autism but keeping the person the same, it’s about trying to make sure one kind of person doesn’t exist, and trying to make sure that another kind of person exists instead.

One highly disturbing thing, is that more than one person commenting on a UK article about this has said things along the lines of, “You people don’t know what you’re talking about. Visit a special school sometime. Then you’ll see why people like this need to be eliminated from the gene pool.”

Excuse me?????

This reminds me of a quote I’ve seen by Erik Nanstiel, about some pictures he saw on the web, including this one:

Can I ask something of all of you here? Did you like to see her like that? [...] I am, however, going to do everything in my power to see that my daughter doesn’t end up like that. I would consider that a great tragedy. A crime. [...] I will never apologize for not wanting my daughter to be like that woman. Autism of that profundity IS a tragedy…not an alternative lifestyle. It’s a DISORDER that can be avoided. [...] when I see that woman (I’m sorry I don’t remember her name) lying there with the lonely blank stares typical of autism…and read of her horrible experiences…all I can think of is how could this have been avoided? I imagine everything she has missed out on earlier in her life…and will likely never experience later in life. She may be “fine” with her life and merely want acceptance and love…and everything else that folks seek in life. But there’s a richness to life she’ll never have because of her disabilities.

You may call this a blank stare, Mr. Nanstiel.

Other people, including people who have always liked my writing, have called it evidence that I shouldn’t be writing what I write, although they didn’t know they were talking about me at the time.

Many people in fact have considered it evidence that I didn’t write what I wrote at all.

I happen to call it something a little different.

I call it my face.

This photograph was taken minutes before I wrote this.

I’m not hiding any exploited autistic people in my apartment, I can assure you. This is what I look like.

My anonymity with regards to the website I wrote is going to disappear, at least in some places, in a few days, thanks to NPR’s rules about anonymity. I had a number of good reasons for staying anonymous (to people who wouldn’t recognize me anyway), too. One of the foremost is because of what I told Cal Montgomery about institutions: When they’re named, people think it’s an individual problem, at an individual institution. I did not intend Getting the Truth Out to include only myself (still don’t), but in the meantime I didn’t want it to be seen as just one person. Many of the perspectives I was including were the perspectives of all kinds of people, both named and unnamed on the site. The issues I raised affect all autistic people. I did not want it drowned out in the midst of interest in an individual story. I still don’t, so I’d ask anyone reading this not to make it into one.

But I don’t know how to make one of the points I’m making in this post while remaining anonymous, either.

In the months after writing that website, I read most of the reactions that were publicly available and some that were not. I read people I had always gotten along with just fine online, who had told me often that they really liked my writing, and so forth. And I read those same people saying things like “Look at this person, is this somebody we really want representing autistics?” “I don’t think someone who looked like that could possibly write something that complicated.” “This has got to be exploitation.” People remarked on everything from my posture to my facial structure to my fat to my story, and concluded such a person was not the sort of person who could write websites.

Other places, I read responses that started along the lines of “I worked in institutions…” “I worked in special education…” “I worked with severely handicapped children…” “My spouse works in these places…”. Then they continued with something along the lines of, “…with people who looked just like that, and I can tell you, authoritatively, that people like that…”. Then they finished along the lines of “…can’t think,” “…can’t write,” “…couldn’t do anything that complicated,” “…aren’t really happy with who they are,” “…will live out their lives in institutions and need constant care,” “…are a burden and not a lot else,” “…do not have a hope of contributing to society,” “…are not anything you’d enjoy or want to be.”

Perhaps now the reason for the title of my blog is clear. People who look like me are ballast-lives until proven otherwise, and sometimes even when “proven otherwise,” we really still are. I don’t happen to believe in Ballastexistenzen, or lebensunwertes Leben, or leeren Menschenhülsen. Whether “proven otherwise” or not, people are people, and I will always stick to that.

But nonetheless, I have been watching people’s reactions to my appearance since before I wrote that website. Still, reading the reactions has been enlightening. Even some people I know and like online hold these views. I’d suspected as much, but hoped not. And the views really seem to run, “Just look at these people, and all your worst prejudices will be confirmed, and you can run off and do bad things to these people or say bad things about these people, with a clear conscience.”

Just go into a special education school, watch students like me, and justify attempts to make sure no more of us will ever have to exist. Because surely watching us in a segregated setting is a wonderful way to get an appreciation for what our lives could be like in a society that accepts us the way it accepts others. Do the people saying that have any freaking clue how insulting that is to their students, their children? Do they have any clue how physically dangerous that is to everyone like their students or children?

No, I want you to look at us and throw your prejudices in the garbage can, stomp on them, and burn them. Instead of stomping on and burning our dignity and our future existence.

I want you to look at us, every one of us, and see the limitless beauty that is possible in the human race. I know it can be hard to see that when you are afraid of someone, or afraid of what it must be like to be that person, but you have to get out of the way and look past yourself to the other person.

I want you to look at every picture that is meant to reinforce your prejudices, and I want you to challenge those prejudices. I want you to be able to look at a black and white photograph of someone like me and see beauty, not a pathetic and pitiful wasted life. I want you to be able to meet disabled people, whether at a special ed school or elsewhere, and look at people, not your mentally projected statistics about our level of pain and suffering (or total lack of capacity thereof) in your estimation devoid of political or any other context.

Look at My Life Is A Gift, a website about Ben Boisot, and read through the writing about the value of all kinds of people. (I’ve seen his mother speak, and while I didn’t agree with everything she had to say, she had that fundamental principle of value down really well.) I’m sure if you saw a black and white photograph of him, or saw him in some dismal special ed class, you’d consider his life awful, too, and preferably to be prevented if possible. But it isn’t.

(Lest you think my life is some kind idealized fantasy-land, by the way, be aware that I’m going to probably puke again within minutes from the Neverending Migraine, and that I’m typing with the screen off because light causes excruciating pain at the moment, and staring at light sounds vaguely masochistic.)

But my underlying point remains the same: It’s wrong to tell people to go off and reinforce their most destructive prejudices by meeting or viewing photographs of people like me, people like my friends, or people like my old classmates. I know that people meet us and don’t really meet us, they just meet their warped perspectives of pitiful awful lives that drain everyone around them and should probably have been prevented to begin with. I know that people view pictures of us and view only what is in their own minds about what our appearances mean, and how they don’t want their children to be like those people. It is wrong to tell people to do this to us, and to themselves. It would be better to tell people to look at who we really are, our real value in the world, and reinforce that, instead of reinforcing people’s worst views of us. It would be better to say that preventing a whole kind of person is eugenics of the worst kind, rather than saying “Just look at them, you’ll see why it’s better that there aren’t more of them.”

Don’t believe for a minute that most of us don’t understand on one level or another what it means to plan for a world without people like us in it. Don’t believe for a minute that “Just look at them” is an argument against our existence, or that there are any legitimate arguments against our existence. And watch what you say about us, we could be listening. ;-)

I’ve long thought of getting a t-shirt that says “I’m the monster you met on the Internet.”

Mainly because in offline gatherings (of autistic people, at least), I appear much more harmless, if also much less capable, than I do online.

What’s this about? Well, on the surface, it’s about the fact that I’ve just gotten called “harsh” again. (No, I won’t say where, because the person already seems convinced I’m picking a fight with them and I don’t need them thinking I’m sending people over, too. The fact that I’m not picking a fight nor being nasty in various ways will probably never be acknowledged.)

But I have been meaning to write this entry for a couple weeks now, and the fact that I have just been called “harsh” again is just a catalyst and a good example of what I mean. The post itself has been forming itself in my head for far longer. I have previously covered various aspects of this topic in On the “angry” nature of my writing, Solving emotions rather than solving problems, and Sordid, anyone?

I’m pretty much unable to pad my writing. There’s two main kinds of padding I can’t add. I can’t add meaningless filler (a bad thing when you have writing assignments that are length-based). And I can’t add all the funny little signals people send to say “Look at me, I’m harmless, nice even.”

I used to have an excellent staff person, who didn’t send a lot of those signals in the offline world. She was a pretty gentle person overall, in how she did things, but she was always being mischaracterized as harsh, abrasive, and nasty. She wasn’t autistic. She just wasn’t stereotypically feminine. In a man, her behavior would not have seemed remotely harsh. Her lack of “feminine signals” was taken by many people to mean that she wasn’t a very nice person, when on the other hand she actually went out of her way to be nice to people. She just wasn’t people’s conventional idea of what a woman should be like: She had “masculine” body language, she didn’t smile constantly, she didn’t go in for random social niceties, etc. She actually lost jobs over this, jobs in which she was often more competent than other employees.

Note that she didn’t have to actually do anything particularly mean. It was what she didn’t do. Which meant that people then inferred a lot of things and viewed what she did do as mean, nasty, harsh, and abrasive in nature. She agonized over this, particularly over the word “harsh” that she was always being called, but she couldn’t change who or what she was.

I’m fairly convinced that most of what people see as my personality, good or bad, is imaginary. This is not to say, along with some of my previous doctors who made the opposite mistake, that my personality is non-existent. I’m just not shaped like people expect. There are things they are looking for, whole patterns they are looking for, that are simply not a part of me. Instead of noticing this, they imagine things into those blank areas, and their ideas of who I am can be stronger than even what I do or say to them. They then reinforce to others their views of what is inside these blank areas. I am sure to some extent this happens to everyone, but for me and many like me it’s a pretty pronounced and constant effect.

Part of the problem is that in order to communicate with people in language at all, I have to use a system of sending information that contains a lot of embedded assumptions about how people work. It seems difficult to get away from this, and people who know me by language can come up with some really bizarre interpretations, having to do more with the way language fits together than to do with what I meant in the first place. I view all language as a form of lying, although I of course try to minimize the amount of deception involved. But lying seems to be an unavoidable consequence of using language. I just try not to compound the problem by telling a whole nother level of lies on top of the inherent lies of language (unless there is a very good ethical reason for lying).

At any rate, one of the false overlays it’s possible to read into what I am saying, is a false overlay of harshness. The interesting, and dismaying, thing that I have found, is that a person can say genuinely harsh things (like wanting their child dead), but do so in a way that is covered over with a lot of particular language triggers, and be considered a nice person in the process.

I don’t use those language triggers. I don’t know if there is a word for those things in linguistics. What they appear like to me, is content that is there for the sole purpose of conveying a specific social impression of the person. That impression is supposed to be that the person is kind, compassionate, caring, nice, sweet, good-hearted, etc. What surprises me is that people read those signals more strongly than they read what is being said. To me, those signals stand out in stark contrast to what is being said, much of the time.

To borrow a technique from my EYEBALLS post, in the more extreme version of this, it must look to a lot of people like saying:

I AM A NICE PERSON I want I AM A SWEET-NATURED PERSON to I AM A NICE PERSON kill I WOULD NEVER HURT ANYBODY certain kinds of people I AM A NICE PERSON and have I WOULD NEVER HURT ANYBODY seriously I AM A NICE PERSON thought I AM A SWEET-NATURED PERSON about I AM A NICE PERSON doing I WOULD NEVER HURT ANYBODY exactly that. I AM A NICE PERSON. I AM A GOOD PERSON. I WOULD NEVER HURT ANYBODY. I AM A NICE PERSON. I AM A NICE PERSON.

I imagine that for people who read those signals, the signals drown out what is actually being said, which is “I want to kill certain kinds of people and have seriously thought about doing exactly that.”

That is, of course, an extreme example. Most people do not use it with anything that extreme. But I have seen people use it with things that extreme before, and I wanted to make the point that people can mask even the extremes of what I’d consider pretty damn harsh and hateful views, inside these “I am nice” signals.

The interesting thing being that the expectation at that point is to respond to the “I am nice” signals rather than to what is being said. It counts double against you if you not only respond to the content of what is being said (in the above example, the “I want to kill certain kinds of people” part), but also fail to add your own “I am a nice person” signifiers while doing so.

That can actually lead to the incredibly surreal situation where saying “Killing people on the basis of what kind of person they are is not a good idea” is considered more harsh than saying “I want to kill certain kinds of people and am seriously thinking about doing so.” All it takes is for the first person to lack “I am nice” signifiers and the second person to put them in at nearly every other word.

I have read of versions of pop psychology that take things so far as to claim that all communication and action is merely some version of giving and receiving those social signifiers. I don’t subscribe to that, because I can tell that people can act and speak for ethical reasons, but I imagine that people who do hold to those theories would imagine up all kinds of sorts of strange motivations in anyone’s writing that was primarily concerned with ethics or something else other than social signifiers.

What the signifiers are based on, of course, is incredibly biased by gender, class, culture, etc. And I’ve noticed that a powerful (in terms of existing, “accepted” power structures) person can lack more of the “I am nice” signifiers and get away with it, and a less powerful person can get away much less with leaving those out. Rich people, men, white people, non-disabled people, etc, are often given more leeway. I think much of the “bitter nasty cripple” stereotype is based on merely the absence of constantly smiling, agreeing with the nearest non-disabled person, and making oneself cute, pathetic, and ingratiating. I have heard people write about how (in American mainstream cultures) men are often afraid of women who don’t smile, and white people are often afraid of black people who don’t smile.

So that’s several strikes against me, in general, in the perceived-harshness department:

1. I’m speaking essentially a foreign language that assumes the existence of personality constructs I don’t have.
2. I fail to send out “I am nice” signals.
3. I tend to respond to the underlying content (whether emotional or conceptual) of what is being said, rather than to the more deliberate signals that point often far away from the underlying content.
4. I’m an “unfeminine” female, a not-little-enough-to-be-cute-anymore autie and gimp, and a (for the USA) lower-class person who will fight not to be treated like dirt on the basis of income. (In other words I’m really bad at “knowing my place”.)

It’s often difficult to tell which of those are at play when I’m being misunderstood as this harsh, nasty, angry person, but I am sure that more of those are at play than the people doing the misunderstanding want to admit.

Speaking of people not wanting to admit things, I had the very interesting experience awhile back, of engaging, along with some of my friends, in a long discussion with someone who had read this blog and insisted against all evidence that I was an incredibly angry and unhappy person. It turned out that evidence did not matter to this person, what mattered was that this was her “impression” of me. That “impression” outweighed every explanation she was given for why her impression might be mistaken, and she eventually said that even if we were correct about me, she was still going to go by her “impression” of me. On the other hand, she held up someone who has openly stated that she hates the way her body and brain work and wishes she could be “normal”, as a happy person that I should aspire to be more like.

By the way, I have of all things a dog who sends out “I am nice” signals galore. That’s in fact the bulk of her communication to people. “I am nice, I am sweet, I am friendly, I am nice, I am sweet, I am friendly.” I mean, even for a dog, her behavior in this regard is extreme, and many people comment on it.

The change in people’s attitude towards me has been astounding. Suddenly people who used to run away or make snide remarks at the sight of me, in one case someone who has run at me screaming and cussing, are friendly to me. I have not changed at all, but somehow being associated with this dog means her signals rub off on me or something. People gain a very different (and probably equally false) impression of me just based on the fact that I’m walking around next to someone with big eyes, a friendly face, and a constantly-wagging tail.

I have to say that their sudden civility (and before, I did not even have civility from most of these people, I had open hostility or fear) is pleasant. But I also have to say that it shouldn’t take a super-waggy dog for people to be able to realize I’m not an unapproachable, possibly-dangerous monster (and yes, the technical term for people like me used to be “monsters”, just as an odd historical tidbit).

There are of course auties who can send more of those “I am nice” signals than I can. They are generally more accepted by, and acceptable to, people who view those signals as important. When I am treated more, dare I say harshly, than they are, then it’s likely to be seen as my fault, because I can’t send those signals. Generally the perception of me can range from me not really being there at all (one way to read the absence of certain signals or aspects of personality), to me being a rude or scary person.

My friends are usually people who can’t send those signals, or else who can send them but don’t put a lot of stock in having to receive them in order to be convinced that someone is not being harsh, rude, and nasty. This includes both autistic and non-autistic people by the way. The ones who can’t or won’t send those signals end up getting the same amount of crap I do — often from people who can send “I am nice” signals and therefore supposedly aren’t “giving us crap” but rather “being nice to us” — and often getting blamed for the way they are treated.

People see us upside-down. They see parts of us that are not even there, do not even exist, the standard mental hallucinations and then some. And those non-existent things often take on more reality to them than what is in front of them. People can be so busy looking for things that are not there that they miss what is there, whether what is there is good or bad. And believe me, if most of my friends and acquaintances are any example, they miss out on knowing a whole lot of really nice, really cool, really interesting people because of their own preconceptions of what signals a person must send out in order not to be the opposite of that.

Of course, as long as what people “feel” that they perceive takes precedence over what they are perceiving, that’s going to continue to be the case, and a lot of people doing the wrong thing, including some strikingly wrong things, will be considered “nice” as long as they send out the “proper” signals, and a lot of people doing the right thing, including some strikingly right things, will be considered “mean” as long as they do not send out the “proper” signals. And, as I said, some of the nicest, most loving, interesting, ethical, funny, and fun people I’ve ever met will be considered mean, hateful, uninteresting, unethical, humorless, and boring.