Monthly Archives: June 2006

What the X-Men movies didn’t say.

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I’ve now seen X-Men 3. Most of my thoughts on it are summed up in either the post or the comments at the Ragged Edge’s review of the movie (although I’m sure plurals who read this will note that they’re represented in the Ragged Edge comments only by someone who thinks of them as having a “dissociative disorder”). Another thought, which has long bothered me about the X-Men despite liking them, is as follows. (Most of what I’m about to say is common to all X-Men stuff, so there won’t really be spoilers.)

It reinforces a particular way of thinking about people and their political beliefs, that is common but destructive. It lumps several beliefs and actions together, into basically two groups.

Group one (represented by the Brotherhood of Mutants):

  • Bad/evil.
  • More extreme views relative to the society they are living in.
  • Separatist
  • Hatred.
  • Sense of superiority over non-mutants.
  • Willingness to kill or betray without remorse, particularly non-mutants.
  • In fact, willingness to kill all non-mutants. Only lives truly concerned with saving are mutant lives, and particularly mutants who are on their side.
  • The strongly held belief that mutants are perfectly fine as they are and need no cure.

Group two (represented by the X-Men):

  • Good.
  • More moderate views relative to the society they are living in.
  • Assimiliationist
  • Love.
  • Sense of equality with non-mutants.
  • Primarily trying to save lives, killing only as a last resort and with reluctance, and a general sense of fairness.
  • Saving the lives of mutants and non-mutants alike.
  • More variety in response to the question of cure.

As one reviewer put it, you’re clearly supposed to side with the “good guys,” but it’s the bad guys making all the best arguments against cure and successfully pointing out the real ways in which it will be used. The issue of siding with the “good guys” is forced by the actions of the “bad guys,” which very few people would condone.

But those two groupings of ideas up above, are not the only way ideas can be grouped. Unfortunately, I’ve actually seen people arguing what views to hold and not to hold, based on whether they sound more like views held by the Brotherhood of Mutants, or more like views held by the X-Men. People are influenced by this stuff. It provides two convenient stereotypes of styles of activism, for one.

For the record, with regards to autism, I don’t believe in a cure, I don’t believe that cure will be voluntary, I don’t believe that even what looks like “voluntarily” choosing a cure is as voluntary as its proponents would have us believe, I believe that prevention would be merely a form of eugenics, I don’t believe that some autistic people are so defective that cure is the only option (I don’t even think of people in general as defective), and my views on many things disability-related are characterized by the society I live in as extreme. At the same time, I am neither hateful nor perpetually angry, I am not a separatist, I have no sense of superiority over anyone, I don’t want to see anyone dead, and I have a strong sense of equality for all kinds of people, autistic and non-autistic.

But take the first several viewpoints, and it’s easy to view me as at least either angry, hateful, or having a certain sense of superiority, based on certain stereotypes of what it means to hold the views I hold. And those are often charges I have to answer to, by people whose vision of the world seems to bear a strong resemblance to the cartoonified simplifications that make their way into the X-Men.

I should note, also, that while I am not a separatist, separatism does not necessarily mean any of those negative things either. It can mean just entirely or primarily wanting contact with a particular kind of people, for all sorts of reasons. There are many autistic people who mainly or entirely have contact with other autistic people, where they can manage it, and there are others who want to build communities of entirely autistic people. This doesn’t seem like a problem to me, even though I wouldn’t want to live there. I don’t automatically view them as hateful or supremacist, because most of them aren’t. Some people do view them that way, though, and that is not accurate.

Moreover, there are plenty of people who think that if they hold one of those views, then they themselves must do the other things described on there. There are people who start out with a view that we are absolutely okay as we are, and work themselves up into a state of artificial hatred or superiority that they would not have worked themselves up into to begin with had they not believed that these things were all necessarily connected. There are plenty of people with more moderate viewpoints who characterize the degree of moderation or “neutrality” in their viewpoints as the only way to promote equality or love, and there are people who are drawn to embracing more “moderate” or “neutral” viewpoints in the fear that they will not be promoting equality or love unless they do so.

In America, the extreme version of views of women’s rights a hundred years ago would be considered unbearably sexist now, even by most people who are not feminists. And many of today’s views held by many people who have plenty of sexist viewpoints, would have been considered unbearably radical back then.

Whether a viewpoint is considered extreme or not depends entirely on the society it takes place in. In a society that totally devalues a group of people, saying that this group of people is valuable as they are and does not need to be prevented or changed into a different kind of people, looks like an extreme view. But in a society that more or less accepts that group of people, it’s not an extreme view at all.

Therefore, it has always seemed to me that a view should be taken on based on whether it seems to be the right view, rather than on whether or not it is extreme in the society that it’s a part of. Taking an “extreme” or a “moderate” view for its own sake, is putting yourself totally at the whim of the society you live in, and reinforcing its own structure of how views are seen.

I talked about the movie to a neighbor of mine, and she said something like “It sounds like the good guys in the movie were what people think of as the good guys in real life. But in real life there’s a third group of people, and that’s us, even though people really don’t hear about us.”

So, while I enjoy watching the X-Men, I really hope that it doesn’t reinforce too many of people’s rather polarized views of what certain beliefs mean about a person’s other beliefs. There are third, and fourth, and fifth, etc, categories, we’re not all X-Men or the Brotherhood of Mutants out here in the real world.

Katie McCarron, Charles-Antoine Blais, real children, real people.

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In November of 1996, I was living in an institution in which a doctor explicitly told me that he wanted to kill the person I was and replace me with someone else, and that he was going to, psychologically, do exactly that to me. I was totally unaware of things like the Oklahoma City Bombings. I found out who Timothy McVeigh was by accident two years ago by finding a taped news broadcast among a pile of my parents’ videotapes I was sorting. I was very out of touch with what was going on in the outside world.

I did not know about Autism Network International, either, although it had been around for awhile by then, and put on its first conference right around the time a guy died in the facility I was in and the same doctor was telling me that his death didn’t matter. I, of course, didn’t hear about ANI until later. Dr. Brainwash wasn’t exactly going to be thrilled with the notion of autistic people being valuable as ourselves.

Another person I hadn’t heard of was Charles-Antoine Blais. Charles-Antoine Blais was a seven-year-old autistic boy in Canada. His mother took him into the bathroom, filled the tub, and then held Charles-Antoine’s head under until he drowned.

The St. John’s autism list had a long discussion about him, back then. A very long discussion. In which a woman was castigated for “forcing her opinion down people’s throats” for stating the opinion twice, in a thread with dozens of messages, that she sympathized with the autistic boy and not his mother. Some people even questioned whether she could really be the parent of an autistic child if she did not sympathize with a murderer. Some people accused her of having less empathy than an autistic person (which is supposedly, in myth, very little), and many people treated her like she was doing something awful.

This is what that mother, Tanya Stewart, said:

I want you to imagine this from the childs point of view for a moment. A scared little boy, being taken into the bathroom as mom fills the tub. Mom grabs him and forces his little head under the water. We are talking about an older child here, so he was able to put up a pretty good fight. I would say she had plenty of time to realize what she was doing and stop. How could she continue after seeing his terrified face and feeling him fight for his life?

I am really surprised at the number of you who choose to have compassion for her and not for the innocent child.

The discussion had all the elements that still happen today: Most people sympathizing with or in some way explaining or excusing the murderer. A small number of people openly opposing the murder. A slightly larger number of people practicing a feigned neutrality that ends up acting as if it sides with the majority.

But there was one quote that I wanted to repeat right now, by Mark Painter, further on in the thread:

For myself, I’d like to know what his name was. I’d like to know what he looked like. Was he echoalic? Did he imitate his mother’s every move at the dining room table? Did he flap his hands excitedly, run to the TV set, and giggle whenever they rolled the credits at the end of the program? Did he put all the other little boys in the neighborhood to shame when he climbed the jungle gym at the playground? Was he a ravenous devourer of Kraft Macaroni and Cheese? Did high-pitched sounds make him put his hands over his ears and cry? Did he own a pair of “Bert and Ernie” sneakers that he loved so much he took them to bed with him every night?

Alas, we will never know these things. Too many people think it’s more important to emphasize how miserable his mother was. OK, maybe she had it rough. But I don’t buy the argument that since she went further than any of us would, she must have had it worse than any of us. I’ll bet there are parents on this list who have been through far worse, and yet found it in their hearts to spare their child’s life.

“Don’t judge” is good spiritual advice. But the fact remains that this woman must now be judged under Canadian law. Those of you who are hoping she gets off easier than, say, Susan Smith (to use an example previously cited in this thread), are hoping, whether you realize this or not, that the law will formally recognize the proposition that the life of an autistic child is less valuable than the life of a nonautistic child. (A few of you have come perilously close to openly proclaiming this principle right here on this list.) This is not good for your own children. It is not even good for you.

This strongly resembles something I said in my memorial post to Katie McCarron:

I wonder if you would have liked any of the same things I’ve liked at different times in my life: Trees, books, marbles, blocks, staring sideways at the carpet, playing with my hair, running, stars, flat surfaces, taking walks, staring at everything upside-down, cats, rubbing fuzzy things on my face, getting pine nuts out of pine cones, picking blackberries, having mischievous but loving older brothers, light switches, sparkly sidewalks, rocks from the moon, typewriters, sliding tape measures, and prisms.

I thought, given that the newspapers were not reporting anything about who she was, that we would never know. Her grandfather, Mike McCarron, was strong enough to come forward in the midst of all this and stand up for her value, stand up for her being recognized as a person. That was something many of the people I knew in institutions did not have. That was something that Charles-Antoine Blais did not have. But Mike McCarron has told us more about Katie than I’d ever hoped to know:

I would like to say something about Katie. Some newspapers have reported that this was done to end Katie’s pain; let me assure you that “Katie was not in pain”. She was a beautiful, precious and happy little girl. Each day she was showered with love and returned that love with hugs, kisses and laughter. Katie loved music; she would fill in some of the words in children’s songs as my wife would sing along with the CD that would be playing, their own version of “karaoke” . She liked to dance, she loved to do the “hooky poky”. She loved being in among flowers and tall grass. She would say “I like grass”. She enjoyed the zoo and because of all of the drills and flashcards she could identify the animals. Which I thought was pretty amazing for such a young child. She was also the only little child in her non-autistic play group that could identify an octagon. My wife and son had a party for her the day they heard that from the teacher.

She enjoyed having her grandmother dress her in new little outfits and dresses, and I think this is important. We have four grand-daughters, my wife loves to buy them frilly little dresses. When my wife went into a store she would never ask for three normal dresses and one autistic dress. I think we need to be very sensitive to the special needs of these children but at the same time not be oblivious to the numerous typical traits that are also developing. Katie was first and foremost a little girl, she enjoyed people making a big fuss over how pretty she looked. My wife would take her to the beauty shop to have her hair trimmed. Katie enjoyed going to the mall and looking in all of the stores and windows. These are female things.

She went to special schools everyday, the staff at those schools cherished her. I can not say enough for the staff at Mariposa. They were so very much more than professional therapists, they adopted her and loved her deeply. Katie was so lucky to be with them everyday.

There is also another young lady in North Carolina who worked with Katie during non-school hours. The bond that she had with Katie was unbelievably deep. I am amazed that a single Mom working to raise a son by herself could find so much extra love. Maybe love is one of those special resources, the more you give the more is given back.

Katie loved the park, the swings, the slides and being outside. She played with her dolls and toys; she loved “teletubbies” and brought joy to all of those that had actual contact with her. Yes, she was autistic. Developmentally she was behind other children. But her small victories would create unbelievable joy for those who loved her. I can not describe the ecstasy of having her little arms around my neck or of watching her and my son roll around on the floor playing in shear happiness.

Each day I ask the Lord if I could take her place, and perhaps He could return Katie to the loving arms of my son and my wife. So far that prayer has not been granted. But in the meantime I can assure you that no one will describe her murder as “understandable” or devalue her in anyway without my personal challenge to them and the organizations they represent.

I put pictures of myself at Katie’s age in my memorial post, because there were no pictures of Katie out there, but now I have found out otherwise from Mike McCarron.

He has given people permission to use photographs of Katie, but only if they are not used in any way to lament the “lack of services” that some people blame for her death, and only if they are not used to call her a burden or paint her death as “understandable” or anything remotely close to that. Not Dead Yet, an organization that works against the idea that killing disabled people is understandable, has posted about the terms of usage of these photos on their Photos of Katie McCarron page, where the full-size photographs are also available.

A little girl standing in front of a lake, smiling, holding someone's hand

A little girl pushing a stroller with a doll in it

A little girl playing with a teletubbies doll

Those are images of Katie McCarron.

They are images of a little girl.

They are images of a human being.

They are images of a person.

Standing up for the value of lives like ours — Katie’s, mine, and many others — can be exhausting. The level of biting hostility we get in response to saying “Murder is wrong” is astounding. But the next time I think of giving up, I am going to think of Katie and her grandfather Mike McCarron who is standing up for her, under pressure and amidst publicity, even at the same time that he is mourning a cherished granddaughter.

I am a Quaker. Quakers do not take vows or oaths. But we do speak as honestly as we can manage about what we will and will not do.

I will remember Katie. I will remember Charles-Antoine, who the world never got the chance to hear about except in pathologized terms. I will remember Jeff, Stephanie, David, Vanesa, and all the other people I left in institutions, some living, some dead, most without anyone to stand up for their value as the real people I knew them as. I will remember them with love. I will remember them with value. I will do my best to convey the fact that murdering anyone, including one of us, is an act of desecration that turns far, far, far away from love; it is taking all the beauty that goes into a person away from us forever. I will celebrate who we are and have been, and mourn who some of us will never get to become. And, like Mike McCarron, I will stand up to anyone who says otherwise in my presence. I will do all these things, not for the hatred that some accuse us of, but for the love and value of all kinds of people, those I have known and those I have not.

The roadmap that didn’t exist in the first place.

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When your child is born, you don’t have any idea what she’s going to grow up to be like. Sure, if you’re fanatically controlling enough, you might have some idea of what you want to force her to be like (I knew kids whose parents insisted they would be doctors, that’s the sort of thing I mean) but you don’t really know. You don’t know what her strengths or weaknesses are going to be. And that’s, basically, okay. Most parents are fine with finding that out, they know the approximate time schedule on which they’re likely to find out, and so forth.

When the child is autistic, that somehow changes. What does not change is that parents don’t know who their child is going to be. What does change is that they often suddenly think they know, and they think they know early, what their child will and will not be able to do. Being from an ableist society (and therefore almost undoubtedly displaying more than a little of this ableism themselves), they proceed to freak out, equating inability to do certain things with inability to live a happy enough or worthwhile enough life.

But back to those assumptions on what children will and will not be able to do.

First off, the uncertainty of what even an ordinary child will and will not be able to do, is rarely acknowledged as fully as it should be. Children do not come with specifications saying what they’ll be good at. They also don’t come with warranties or guarantees as to the fact that they will always be as good at things as they are now. They could get hit over the head, contract a disease, lose a limb, and so forth, and suddenly be unable to do things that most people can do (or most people can do at some point in their lives, at any rate). This is rarely acknowledged, though, and when it is, it’s seen as really too unpleasant to think about. Disability is so thoroughly equated with something unspeakably bad in life that most people don’t like to think about the fact that nearly everyone on the planet will be disabled at some point, including their own children.

But back to autistic children, for whom the opposite mis-estimate of our abilities is common. Not only can’t people tell what their autistic children might be able to do in the future, it’s been my observation that most people are unable to tell what their autistic child can do right now. And minus the roadmap of a schedule, a lot of people get disoriented and imagine something that they think would be the worst.

So then they get freaked out and start plugging away at trying to shove as many skills into their autistic child as possible, thinking this might cause the autistic child to somehow beat what they see as the odds, and live what they see as a better life. (All of this is on a very individual level, since our society views disability as an individual thing rather than being the product of an interaction of certain individuals with a heavily biased society.)

I think I must be a fairly prototypical example of why that approach doesn’t work very well.

I have had a lot of people try to shove a lot of skills into me for a lot of reasons. What they got, was short-term performance, if anything. After an hour, a day, a week, a year, or even several years, this performance inevitably broke down. It was the equivalent of running marathons on a daily basis, it simply could not be sustained even by someone who was used to it.

I at times very much wanted to earn the rewards (this includes the rewards offered to non-disabled children as well as the less standard ones offered to disabled children in return for certain behavior) but simply could no longer force my brain to do something that it couldn’t really do or understand in the first place. Many of the things I was doing were things I had little to no understanding of, I just knew bad things happened if you didn’t do them, and good things happened if you did. And most of the things I was doing were ill-suited to my brain and totally unsustainable.

Of course, when an autistic person can no longer sustain the unsustainable, this gets called regression, a term that itself exemplifies the “forward forward forward must always be moving forward and we damn sure know which way forward is” mentality that many non-autistic people get into around autistic people.

But, in all this, hold on a minute.

There was a lot of information I processed on my own, a lot of stuff I learned without knowing I was learning it, a lot of background information that was getting stored and people in all their effort to foreground all the wrong ways of doing and learning things, were trampling all over my ability to access.

Most of this stuff has come to light in adulthood, and I don’t think it’s totally a coincidence that a lot of this has come along with avoiding “skills training programs” (and anything resembling them, including school) and having plenty of exposure to other autistic people in natural (non-institutional) settings.

The things I have become able to do in adulthood are extremely varied. I have more understanding of my environment, including my body. I have more ability to do various things, including things that I was horrible at as a child. I have things like lasting friendships that I never really had before. And, as I pointed out, I can blow my nose now.

I learn on a different wavelength than most people. You put the information into me, you let it sit there in the back of my head somewhere, and it eventually sorts itself out. This takes time. Sometimes it takes a lot of time. Sometimes everyone is very impatient and wants to take shortcuts.

Have you ever tried to take a route that looks shorter, but ended up with so many obstacles in the way that you had to turn around and take another route that in the end took twice as long as your original route would have to take? That’s what these shortcuts people try to impose are like. They may look good to some people in the short run, but in the long run, they are the very long way around. You can succeed in pushing someone to do something well beyond their capacity, but eventually they’re going to crack under the strain and you’re going to have to work with their actual (rather than imagined) capacities.

I can see why the way so many autistic people do learn is not very popular. There’s no quick results. There’s no snazzy teaching style with a cool-sounding name or acronym. There’s no money to be made in this. There’s no nifty theories backed up by bizarre notions about our development having got off-track at some point and needing to be pushed back on track. And there’s not even an illusory guarantee of normalcy at the end. In short, there’s nothing in this learning style for money-makers to capitalize upon or parents to feel like they’re doing something doing something doing something doing something doing something “for their child”.

Plus, it’s slow. You won’t have your imagined timetable for development, we may even learn things in a totally different order than you expect (my brother was even seen at a developmental disabilities clinic for “going through the stages of development in the wrong order”). You have a child who’s quite possibly going to be learning, in adulthood, things that non-autistic babies know when they’re born, and you’re not going to be able to speed up that process.

But it’s also notable that we do often learn these things in adulthood, provided we’re not prevented from doing so. (Self-fulfilling prophecies can be really interesting things.) And provided we do these things at our own rate.

I’m sure someone’s going to come along and say, “She’s anti-intervention, she’s for doing nothing, etc.” in response to this. I have another post coming about which parts of that are and are not true.

Whether or not we acquire certain skills does not determine our happiness. Otherwise I would be much more unhappy about who I am, and some people I know who fit a much more “functional” stereotype would be much more happy about who they are.

But regardless of whether these skills are tied to happiness, childhood estimates of our skills are not only inaccurate but ridiculously so given the amount of time we spend learning these things in adulthood, and the fact that we are synchronized to a totally different rhythm (of learning and nearly everything else) than the rest of the world. I’m currently going through a period of a lot of things “clicking” that had never “clicked” before (some of which “click” for most people at a very young age), and it’s becoming apparent to me yet again that all the forced-training in the world can’t override my natural learning style, and that common estimates of what we will become like in terms of skills are out of touch with reality.

(I now have a very bad toothache, so I’m going to follow up on this in other posts later after I can think again.)

Autistic Pride Day — and taking things personally.

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June 18th is apparently Autistic Pride Day.

It’s come to my attention that the people who initially put it together think that there’s been some kind of collossal snub [edit:  Amy says they didn’t say “colossal snub”, but I was told they thought it was something negative towards them at any rate] on the part of autistics.org, in that we didn’t announce it last year on our front page, and Joel Smith wrote an article about his reservations towards the way some autistic people conceptualize autistic pride.

So just to clear that up:

Last year on June 18th, one of the webmasters of autistics.org was in the midst of a 3100-mile move, others were preparing for Autreat, and another was sick in bed with an infection of some sort. I can’t speak for the others, but at the time, Autistic Pride Day was barely making a blip on my personal radar screen. It was just one of a whole lot of events and such that people were talking about. And, just for more fun, we were experiencing a website outage.

As far as Joel was concerned, I’m not going to claim to read his mind, but I’m going to hazard a guess from what I know of him. Joel, like me, is very concerned about a false form of “autistic pride” that is really merely “pride for some auties at the expense of others”. The kind of “pride” that allows Temple Grandin to say that she’d rather non-speaking auties not exist, but auties like her are okay and beneficial to society.

I doubt he knew much, if anything, about who was putting on Autistic Pride Day, and the reservations were probably of a more general nature. The notion of “I hope this isn’t yet another form of disability pride that’s founded on fundamentally ableism principles” is one that tends to cross my mind when presented with any form of “disability pride”. I kno someone who was surprised to find out that among many wheelchair users, “disability pride” was actually some variant on “At least I’m not retarded.” As someone involved in several disability communities, I know that many do have ableist versions of “pride”, this is not something made up to spite a particular person.

(Unfortunately, the opinion Joel voices is one that often gets wrongly condensed into the notion of “We shouldn’t talk about our strengths,” which is not, I think, what he’s saying at all.)

So, no, nobody on autistics.org was insulting any particular person who put on Autistic Pride Day by either failing to mention it on our front page (we don’t mention everything in the world on our front page anyway), or by the article Joel wrote.

Unless, of course, anyone celebrating on Autistic Pride Day did turn out to be doing the things Joel wrote about, but given that I don’t think he knew anyone putting it on, he wasn’t talking about any particular person involved in it, and wasn’t trying to undermine the whole day. It was in fact my impression, reading the article, that he was in fact attempting to enhance Autistic Pride Day by providing discussion of what were good and bad ways to celebrate being autistic.

So as tempting as it might be to consider oneself to be under extreme attack by reading a whole lot that wasn’t said into that article and into our silence, there was no attack, extreme or otherwise, there. You’re not dealing with hostility, you’re dealing with (mostly) some combination of incapacitation, being busy, unawareness, and indifference, as well as enough experience in the autistic community to know that “autistic pride” can be done both well and badly and to desire that it be done well instead of badly.

So, again, no snubbing is or was going on here. It might be useful to make fewer assumptions, though. I find it very strange that failing to link to something would be considered an attack in the first place. If I thought that anyone who didn’t link to autistics.org was attacking us, even if I limited this to the autistic community I’d be imagining myself a lot of non-existent enemies. This aspect of things reminds me of people in the offline world who think that by failing to notice or talk to them I’m being stuck-up or rude, when really I am processing them as a bunch of moving shapes and incapable of conversational speech.

So consider this my announcement of Autistic Pride Day, and my explanation of why what some people apparently think they saw, wasn’t actually there in the first place. I don’t know a lot about Autistic Pride Day, even still, so I can’t really point out what it is or anything, but it’s out there.

I’m the monster you met on the Internet.

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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.

super-waggy I-am-nice-expert dog

super-waggy I-am-nice-expert dog

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.