I maintain a blog. I reply on several blogs. I reply on several forums. I belong to several mailing lists. I make videos, which is pretty time-consuming with the equipment I have. I am trying to build a simulation of an institution on Second Life, as well as help maintain the Autistic Liberation Front property over there. I help maintain a website. I am trying to get through a difficult written interview for a research study. I am trying to write something offline (what that is, at any given time, varies). And I have a life offline, not to mention a greater need for both sleep and time doing nothing than most people.

I rotate between which of these things I’m focused on. Sometimes I don’t read mailing lists for months at a time and then pop up on them and post or read a little. Sometimes the same with all the rest of these things. Sometimes I rotate rapidly between two or three things. There is no way I can do all of these things at once. Most people are only exposed to me in a small number of these locations, and many forget (or never notice) the rest of them exist at all.

If you see me inactive, or less active, at any one of these things, don’t read anything more into it than the fact that I am busy. I’m not forgetting people, hating people, afraid of people, or anything else that people read into it. That’s when my absence is actually occurring, and not just people failing to notice that I’m actually there (which happens too, for some reason I can’t figure out). Sometimes the simplest explanation — busyness, and having less energy than most people to begin with — is actually more real than all the weird things people can imagine up.

There’s such a thing as coincidence: The other day, I was very busy at something else, fired off a post or two on one place, did a bunch of other stuff in other places, came back to that place in a day or two without even remembering the posts I’d made, and found that all hell had broken loose in my absence and that topic had been locked. I pretty much ignored it and continued posting there whenever (a) I was capable, (b) I was free, and (c) I was interested in and had something to say about the topics (which was pretty much every day).

Now I’m hearing that some people think I stayed away on purpose (including the day or so I was gone doing other stuff) because of the subject matter. The idea that I do have other things going on in my life doesn’t seem to have been considered as an explanation, but I can assure you it is the only explanation there. There are other times I stay away from places for the same amount of time, for the same reasons, and everything runs smoothly, and people don’t notice that I’m away. A hyper-selective sense of cause and effect is a strange thing.

Other times I really am disinterested. I’ve been skimming a lot of blogs and stuff lately (the last few months) because they just don’t seem all that interesting to me. Not because I dislike the people, just because I can’t get myself interested in whatever they’re saying at that point. I’m assuming they’re interesting to other people. And other times I’ve picked something else up and something ends up shifting. For instance, since recently going back to a forum I’d rarely posted on for awhile, I cut back on a few others. Sometime in the future I have no doubt I’ll be leaving that one alone and going back to the others and doing most of my posting there. I certainly can’t post everywhere at once, or do everything at once.

I even do this with friends, including my closest ones. I keep in contact with one or two and then I can’t keep in contact with others, so I rotate. So, if my friends can deal with it without reading much into it, surely various forums/lists/blogs can. And if anyone thinks staying away from a place for a day, or merely posting less, is a sign of something, they should see all the interesting and pretty even-keel places I only post at once in a blue moon.

Edit: The person meant something different, based on thinking I meant something different, and so forth, but I’m leaving this post anyway since it may be useful.

In someone’s response to my post on spirituality (on another blog), they seemed to get the impression that I did not believe in spiritual teachers or mentors. I guess I hadn’t mentioned any (or not explicitly), and had mentioned some people who tried and failed to fall into that category. But actually I do believe such people exist. The trouble is that far more people are trying to sound like such people, than actually are.

This is not to say that a person cannot learn a lot from people who are trying to sound like such people and aren’t. There’s a lot to be said for learning what not to do. But as far as directly learning positive things from people, that’s something different.

I’ve personally never had a spiritual teacher who had a title in that area. I know some exist, but I’ve never met one who had the word reverend, swami, guru, rabbi, lama, etc, around their name. Nor have I met one who is a transpersonal therapist, or for that matter a therapist at all. Nor have I met one who traveled the world giving seminars on spirituality, or who sold tons of books on the topic, or who advertised themselves in general (or were advertised in general) as a very spiritually evolved person, or who was heavily involved in new age pseudo-spirituality. I’ve rarely met one who spoke in any way stereotypical of such people.

This is not to say I’ve never had one, even many.

Within the branch of Quakerism I practice (Quakerism itself, for reference, being a branch of Christianity dating back to the Protestant Reformation, but often distancing itself from other Protestants), there’s a belief that anyone can be called to ministry, not just one person who is picked as a minister. This means that on worship days, you go to the meetinghouse, and you sit silently with everyone else and pray. If someone believes they are inspired by the Holy Spirit to speak, they do. If not, they keep silent. Some meetings can go without anyone saying anything.

There’s always the question, of course, about how much of what is being said comes from people’s egos, and emotions, and all kinds of other stuff like that. One of the purposes of doing such a thing in a group, is so that kind of thing can be hashed out. That depends often on the composition of the group though, whether that happens, and how often that happens. In a group that’s going off track, Quaker meeting for worship can sound like a bad group therapy session. And given that many people join Quakerism more for its reputation for political activism than for its religion, and given the immense class and race privilege of many Quakers, that can happen sometimes. The clerk of the meeting I used to attend and am still a member of, used to remind everyone, “Remember, Quakers are officially called the Religious Society of Friends, not The Loose Confederation of Political Activists.”

But what it means when things are going right, is that the real wisdom tends to be amplified and the ego stuff tends to fall to the side. That means that all sorts of ordinary people who happen to go to meeting, can end up serving as spiritual teachers. Although, also in well-running meetings, it’s emphasized not to exalt the person for saying whatever they have said, but rather to exalt God for allowing the person the ability to perceive what to say.

Which means I have learned a lot from a lot of total strangers who happened to attend Quaker meetings, who I don’t always even know well enough to tell apart, but who said things that were important for me to hear at the time.

The spiritual teachers that I’ve actually known personally, have tended to likewise be ordinary people, and specifically not people seeking a position of power or fame for their religious beliefs, and specifically people who were adamant that confusing them with God in any way was a Bad Idea. None of them filled rooms, and none of them had a glow around them (and most of them, like me, took steps to avoid people who did do that). None of them were particularly fluffy, all of them were down-to-earth people whose spirituality was incredibly practical and based primarily in the real world. None of them encouraged me not to think for myself, or to take their word for things without evidence. None of them guaranteed I’d find everything they had to say comfortable. And I learned a lot from them, too.

And of course, in a somewhat different sense, all people can be learned from spiritually, just like all aspects of reality can, if you know where to look. But as far as people who directly spoke to me about spiritual matters, I have in fact had spiritual teachers, but they have rarely been the sort of person anyone would expect.

This may not seem important (and if it’s TMI, skip reading this post), but I’ve been dreading this exam for years. I have a strong aversion to anything being put inside my body, through any orifice at all, that doesn’t belong there. People used to have to get throat cultures off of me by waiting until I started screaming and then swabbing me. Proctologists (and, worse, having impacted stool broken up by hand) were a nightmare. I once threw someone across a room for trying to put a tube up my nose. I have not been looking forward to this, to put it mildly.

My case manager scheduled the exam to be an hour long (longer than usual, because it was my first time there and I’m known to do things like kick people who try to get into various body parts), and to start at 9:20. They were told we’d be a little late because my morning staff is taking a class. We got there at 9:30.

As soon as we walked in the door, the receptionist was sternly telling us we were too late for the appointment and would have to reschedule (this was strange and unusual, because we’d already made clear we’d be late, and so forth). They spent a further ten minutes in some amount of flurry. They talked to my staff, and not me, telling her we had to get out of there and come back another time.

It turned out the person scheduling (probably the woman who was most defensive and hostile to us) appears to have screwed up in a major way. They said we were supposed to be there at 9:10. They further had only scheduled me for 45 minutes, not an hour. And seemed to be implying that we didn’t know what we were talking about when we said 9:20 and an hour.

They wasted a bunch of time on that, and then tried to blame us for the time they lost arguing about that (pretending we only got there after we argued about it, etc). My staff is now very pissed off, because she said she’s never experienced that even when very much more late for these things, and she said she was pretty sure if I wasn’t disabled they’d have made room without a fuss.

The gynecologist herself though was very nice, and totally not bothered by a number of my less pleasant actions (including screaming really loud at the door), nor all that ruffled when I answered a question with something like “Uh, I was in an isolation room, I wasn’t paying attention to my migraine auras at that point in time”. We told her, I’ve been steeling myself for this for weeks and am not going to leave without doing the exam, basically. We told her about the scheduling screwup.

She did work my exam in, in between other patients. She showed me my parts in a mirror, which was kind of strange-looking, and reassured me that they were normal, which I wasn’t too worried about to begin with. I managed not to kick her during the exam (I concentrated all my energy on moving my legs downward, not at her, which got interesting when she then wanted me to “relax my legs”, I was thinking “Are you sure you want me to do that?”). Although my staff said I nearly broke her finger squeezing it. I made a fair bit of noise and flapped a lot but I got through it.

She said nothing seemed at all wrong down there from what she could see. She’s ordering blood tests for a number of things that either run in my family, or I’ve had problems with before (diabetes, anemia, cholesterol, etc). And of course she (like plenty of other people) is interested in re-testing my hormones because of my facial hair. (I know some people online have decided it’s high testosterone — I’ve been tested before, I did not have high testosterone or similar things then, and I’ve had facial hair of one sort or another since I was a kid. Hairiness is one tiny but externally obvious part of a genetic thing I probably have.)

So… I’m through.

That may not seem like a lot, especially to women who’ve had a lot of these before and also had babies and stuff, but it feels like a lot, since it’s new to me, I didn’t kick her (!), and I’ve been dreading this forever. I am now sore in places I was happily unaware I had until now, but it’s over.

It’s come to my attention (and been commented in my blog) that some people appear to believe that I am being used by various people. I suppose it’s more comforting for some people to believe that, than to believe that I could make my own decisions about which people, and which viewpoints, I prefer to associate myself with.

(Although I’ve also been told recently that apparently being severely disabled should make me incapable of even knowing my sexual preference or deciding whether to have children or not, so go figure. Hint on that one: It, is, done, all, the, time.)

This weekend Kathleen Seidel and her family (including autistic kid) came by. They visited me and Laura Tisoncik on their way somewhere, just to hang out. They walked my dog to the park with me, then came back and took me and Laura out to dinner, then hung out and talked for a bit afterwards.

It always amazes me, actually knowing Kathleen, how much vitriol is aimed in her direction. I know her as a nice person who cares deeply about other people, including autistic people, and who is working very hard not just for her child but for other autistic people. I have a fairly accurate bullshit-meter, and Kathleen does not peg it in any way. She also drove me to AutCom awhile back, gave me a good deal of assistance in the hotel (even down to facilitation when I needed my arm held so I could type), and read my speech for me, which was all about how to best provide assistance for autistic people, what does and doesn’t work. We gave that speech there alongside three other autistic people, one also who uses typing to communicate (but can then read his words allowed), and two who speak.

There was no exploitation going on — if anything, I was using Kathleen for a lot of assistance that I don’t normally expect from people, that she gave uncomplainingly the entire time. She has in the past even driven out here to provide assistance and backup at crucial meetings with the developmental services people who had wanted me to live in a more restrictive setting. She came out and helped me fight that. She strikes me very much as a person who doesn’t just talk the talk, she walks the walk. And she’s also generous and funny and interesting as a person, hence the fact that we just hang out sometimes. Our relationship is one of equals, it’s not even the sort of mentor relationship I have had with Laura, it’s just we’re people who like each other and have fun talking, and also happen to agree on a lot of disability politics.

Similarly, I met Anne Bevington awhile back at a booksigning by Dawn Prince-Hughes. She later came by my house to help me out when my staff was sick. She’s a lawyer with an autistic son. She also wrote a letter for me, in her legal capacity, when I was facing that same threat of a more restrictive living environment. And also volunteered to come to meetings with the Regional Center in California as my lawyer. Again, she’s a very nice person, who does more than just talk about things.

And then there’s Laura herself. She sacrificed pretty close to everything else in her life for awhile trying to get me on my feet in early adulthood, when very few other people knew what to do. She gave me step by step instructions on everything, sometimes for 12, 24, 36 hours straight, because I had so much trouble moving (compounded by having to do so many things, and not getting enough food to eat) that I needed constant reminders on what to do with every limb. She did this because she was my friend, and because she knew what the alternatives were. She helped me get services, and she helped me recover from my experiences in institutions enough that I’m no longer in a constant state of flashback. During that time period, she put many of her projects on the side in order to assist me, and her health deteriorated from lack of sleep and stress. (Note: I don’t think this is a natural effect of a disabled person on someone, I think it’s a natural effect of supports not being distributed well enough, so that everything falls onto one person.)

And she did this, not to be a do-gooder, but because she cared about me and thought it was the right thing to do — she also helped me gain a lot of skills I didn’t have at the time, including many related to communication. She did not want me to end up institutionalized or, like she had been at points in her life, homeless. While these days our relationship is far more equal — we even live next door to each other, and we help each other out pretty close to equally, if alternately — at that point she was doing way more for me than most people would for someone. (Relationships don’t have to be exactly equal at every point in time, that’s kind of unnatural given how humans work, and it also becomes ableist as an idea.)

And yet people accused her once of “using” me too. They assumed that she wrote my website, and stuck my pictures alongside her writing. When really, if it’s in sheer amount of assistance received from someone else, she’s done way more for me in terms of actual physical tasks and stuff, and at a lot more sacrifice to herself. But people don’t see that, they just see one person who looks more normal, and one person who looks less normal, and they see the one who’s more normal exploiting the one who’s less normal. Even if the person who’s less normal comes up with an idea, it’ll be credited to the more normal person.

I’ll also note that I’m selective about who I allow to assist me with certain things. I don’t let people stick around just because they are (or think they are) doing something for me. I’ve had both autistic and non-autistic people try that, and I tend to stop talking to them where possible. The people I end up liking, treat me with respect, they don’t treat me like I’m beholden to them (and have to like them, etc) if they do something for me, they just treat me like someone they like.

And what’s happening here, is that, I’m apparently, supposedly, not really choosing my friends, or my opinions. Even when I am the one coming up with the opinions, other people are accused of putting those opinions in my mouth — that’s even if I influenced them, and not the other way around, mind you. Last year when there was a major conflict at my apartment complex, I sometimes had ideas, and then Laura followed up on them, but she was accused of leading me into these things even if I led her into them. They basically did the “Don’t exploit the poor little retarded woman” line and even if I was coming up with some of the ideas they wouldn’t believe it.

It’s strange to me, though. I’ve been exploited by some people, and those people are often held up as paragons of virtue. But when I form friendships (which by the way, for most of my life I didn’t have, so this is amazing, that I even have casual friends now) of my own free will, and relationships based on shared opinions, in which our opinions flow back and forth between us freely, with kind, generous, funny, cool people that I happen to like and who care deeply about the world and other people, who sometimes help me out and I sometimes help them out, and so forth, then they are somehow evil and exploitative, and I am somehow their victim. How can these people — who seem totally genuine to me, more genuine than most people, and their words match their actions in so many ways — be the supposedly hateful, vicious, cruel, neglectful, exploitative people that others make them into? Just because, I suppose, their (and my) opinions are unpopular.

So just for reference: I don’t want anyone’s pity for anything, but least of all for having the great friends I have, or holding my well-considered political opinions.

Of course, this reply will probably be considered useless. The person who brought up exploitation also said, and I quote, “I don’t care what Amanda Baggs tells us now under the influence of Neurodiversity. Her opinion means nothing as it it the words of someone who has never known what it is like to enjoy life without autism.” When I tried to argue, I was told that my points are “meaningless” and that I won’t ever know independence or freedom. Oh well.

Today I discovered that while I’m not too keen on playing for audiences, I can play instruments to cameras.

This is messing around with a double-flute (a couple of pennywhistles stuck together at an angle), while a cat tries to interfere:

There’s only about four or five notes (plus another octave of same) on a double flute because you have only one hand for each pennywhistle, etc. And it’s not what I’m used to playing. But I had fun with it. One side can be played as a regular pennywhistle, and I do that more often than I play it double like I did in that video.

If the next video returns an error, wait awhile and try again.

That one is me playing a regular flute. I had a tiny bit of instruction a long time ago, and I was not too great at it. I certainly couldn’t improvise or anything. I picked it up more than a decade later (post-so-called-“regression” and all that, too, so with skills totally rearranged) and suddenly could play, but only if I improvised stuff. So that’s what I’m doing in that video. It’s not the only style I improvise in, but I don’t really pick the style as I’m doing it (nor even know the names of the styles), and I don’t know what it’s going to sound like until I play, so that’s what came out this time around.

These are the sort of skills I meant, a long time ago, when I was describing things I can do that I don’t generally do around people, and that tend to impress people (sometimes more than is deserved, by contrast with assumptions about abilities, and so forth) but that don’t actually make me any more capable, say, around the house or anything.

Well I may have been silly to sign up for NaBloPoMo, but I did. It’s this thing where you write a post every day in the month of November. The trouble is, I don’t want to bore people with vacuous posts made only to fill a quota.

But, fortunately for me, I found an old draft sitting around in my massive amounts of drafts of posts that I’ve never posted before, and it seems to have substance to it:

It’s finally all decided to make sense, one part of what’s bothered me for a long time in portrayals of living as a relative to a disabled person.

It’s summed up in statements like, “I didn’t get to be a kid because of my brother,” or “I can’t do the things I’m supposed to be doing as a young adult because I have to worry about my sister.”

I even had someone (if that person reads this, it’s not a big deal anymore, just an example) tell me that what people were supposed to be doing at her age (which was also my age) basically involved… something like finding oneself, hanging out with friends, not really worrying about a lot, and certainly didn’t involve taking care of someone like me.

For every stage of life, it seems there’s something people are “supposed” to be doing that doesn’t happen to involve the inconvenience of a disabled person plonked into the middle of it. If you take this to its logical conclusion, disabled people are not “supposed” to exist at all, because obviously our main function is to interfere with what non-disabled people (or, at times, people who are disabled in a different way) are “supposed to” be doing.

This kind of talk puts us firmly outside of basic human experiences, when it’s actually clear that disability is a basic human experience, in fact one of the most universal if you take this across the lifespan. But this notion that nobody is supposed to have to deal with anything as inconvenient as our existence (in a social world that has been designed purely for the convenience of other kinds of people) kind of absolves everyone else’s responsibility for dealing with us at all. It, in fact, makes things like disability-based segregation make total sense: After all, we wouldn’t want disabled people inconveniencing everyone else.

Of course, this is not as simple as just disabled and non-disabled. Some kinds of disabled people can say that maybe they don’t need to be forced out of various places, but some people do. Just imagine I’m including that sort of scenario in the rest of what I’m saying, though, because I’m having a hard enough time with language at the moment as it is without covering every contingency.

What we have, is a situation where non-disabled people have a fantasy about a “regular life,” which doesn’t really include things like disability, or anything else “inconvenient” to that life. Instead of being a part of that life, disabled people are automatically intruders upon that life, inconveniences. Burdens. There is a set of things people are “supposed to” be doing, and relating to disabled people is not one of them. Just not on the list of “supposed to”. So, we supposedly deprive everyone else of their rightful developmental stages, from childhood to adulthood all the way into retirement. Because someone came up with a biased set of developmental stages that somehow doesn’t include us or, I suspect, a lot of other people. People don’t get to “be a child,” “be a teenager,” “be a young adult,” “be a mature adult,” “enjoy their retirement,” around us. We take that away from them… supposedly.

Now from my perspective, this gets interesting. Because, well, I’m in this worldview the barrier. I’m the person who supposedly gets in other people’s ways. Somehow, the impact of me on their worlds is supposed to be earth-shattering. Yet, at the same time, I’m facing a world that is not designed for me, has zero place for me, half the time denies that people like me even exist or count as human, is as liable as not to permanently segregate people like me in institutions so that we’re not trouble to other people — is in fact so much not designed for me that every time I interact with it it finds novel ways of shutting me out. Everywhere. And I am not supposed to say anything at all about this. I am, in fact, supposed to shut up and quit being inconvenient. They see someone like me as one single barrier to their living appropriate lives, yet somehow the multitude of barriers I face, including possibly barriers to survival, because of their definition of appropriate, means nothing.

Meanwhile, I am working hard all the time just to keep up with an environment that is designed with only certain kinds of people in mind.

The amount of work I do, in fact, would probably be unthinkable to a lot of the people who imagine people like me to be lazy. (This is also true of poor people and probably a lot of other people besides disabled people, all of whom get scapegoated as lazy.) I am constantly adapting and pushing myself to and past my limits trying to keep up. (To anyone curious, my limits look like everything going totally blank and all conscious thought and movement stopping. They’re not the sort of thing that a little effort gets you past, in fact hitting them is usually a sign of too much effort, and hitting them occurs regularly.)

Disabled people have been part of families since families existed, and there’s plenty of evidence of families assisting disabled people since prehistoric times. While the idea of disabled people as burdens who give nothing in return is an old one, the idea of life in general as something that’s supposed to be easy and follow a particular developmental plan seems like a relatively new one.

I don’t know who invented the idea of a carefree childhood, but such a myth has never been the case for the majority of children in the world. I don’t know how many stories I have heard of teenagers raising their younger siblings themselves after the parents died, but these and other stories of young people forced into situations that modern middle-class American society considers “adult” are also probably more the rule than the exception.

But these days, we’re told it’s supposed to be different. Children who provide a lot of assistance to their parents or siblings, for any reason, are urged to believe they’re missing out on a proper childhood — proper childhood is apparently not supposed to involve any real work at all except for “chores” around the house. And if kids are doing the chores because the parents are unable to do them, then even if it’s the exact same chores they would’ve otherwise been assigned, that’s still supposedly wrong. I’ve been told I “missed adolescence” because of where I spent most of it, but in reality that period of life is only a period of total irresponsible abandon between childhood and adulthood, in times and places where people can afford for it to be so. I couldn’t.

Now I want to take a look at my actual family. (The following labels are ones that they themselves agree to. I’m not going to put everything in quotation marks, it’s just too confusing that way. So consider any of my usual criticisms of psychiatric labeling and such implicit in all this.) My father and one of my brothers have AS. My mother is bipolar. And I’m autistic.

I know how I am supposed to feel about this — according to various bits of popular psychology — by how I see people all over the place portraying it. I am supposed to feel cheated out of a proper childhood by growing up with a mother with what’s considered a severe mental illness, and I’m also supposed to be traumatized by it and very much wish that she would take medication (and possibly involve myself in NAMI and try to force her to take medication, and commiserate with all the other NAMI members when she won’t). I’m also supposed to feel unloved by my father, and like he totally lacks any empathy, and is in most ways defective as a parent as well. Meanwhile, I think I’m supposed to view my brother as a burden and an embarrassment and wish I had a normal brother in his place. In fact, forget just him, I’m supposed to feel that way about my entire family.

Needless to say, I don’t feel any of those ways about any of my family. They are just the ways that I am told I should feel, and other people are told they should feel. And of course, if someone already feels that way, their feelings should be “validated” as “natural under the circumstances,” and then they should go around reassuring other relatives that their feelings are natural too. And, of course, we should all go around telling anyone who doesn’t feel this way that clearly they didn’t live through the hell we did. Or something. Never mind that feelings, as usual, are the results of not just a situation but of our preconceptions about the situation, and that a lot of those feelings stem from some pretty bad preconceptions.

I did not grow up expecting that I was supposed to have only a certain kind of family, instead of the one I had. I grew up, in fact, considering myself pretty lucky, compared to among other things the relatives who really did have to do things like raise all their siblings from an early age, because their parents either died or were too busy to do it all themselves. I also knew that we had it a lot easier growing up than our parents did.

Aside from that, it never occurred to me to divide my family up between which members could be by some standards considered disabled and which couldn’t. Sure, great-grandma used a wheelchair, and her son was her live-in assistant, but that’s what family does. Yeah, my parents told me my brother was brain-damaged at birth, but he was just my brother. My parents’ idiosyncrasies did not seem all that weird to me because they were my parents, that’s just who they were. I grew up hearing stories of my eccentric and way-more-than-just-eccentric relatives and thought this was normal.

And it was. It never once occurred to me to blame the things I didn’t like about any particular relative (and there are things not to like in anyone, but I encountered things like molestation from a few relatives that are really things not to like, and those relatives did have assorted labels that I somehow never blamed this on) on a disability, or to divide them up into their “good” (non-disabled) parts and their “bad” (disabled) parts. I never felt cheated out of a childhood, despite experiencing some of the things that a lot of people seem to whine on and on about in that respect. (They always assume I’ve never experienced these things. I have. I think differently about them, and hence feel differently about them, than people who believe that there’s a particular ideal that everyone should have lived.) Sure I’ve griped about some of the really screwy events in my family but not in the “poor me I had to have disabled relatives and was cheated by it” sense.

Just as some parents believe they’re entitled to a perfect child (where perfect is defined by some pretty biased standards of perfection, at that), some people believe they’re entitled to perfect (again, pretty biased standards of perfection) relatives in general. That anything less than that is having something stolen from them, and a perfect excuse to feel sorry for themselves (and have this self-pity praised by therapists and sibling support groups and NAMI and the like).

I have to believe that this sense of what the stages of life are supposed to be like, and what people are supposed to be around for others to relate to, that somehow excludes the experiences of probably the vast majority of people on the planet, is relatively recent, and entirely mythical.

I gave a presentation a few years back at Easter Seals Central California for staff who worked there. The following video was made from the text of one of my handouts for that presentation. It addresses the extreme dehumanization experienced by people in that system, and that had probably taken place in the lives of almost all the adults served by the agency, including me.

Note that I thought people might have got sick of watching me sit around flicking my hands around, so I did most of it from a different perspective this time. Also note that the things I talk about are far more widely applicable than just the system I was describing to them at the time.

I’ve just encountered two extremely different responses to the way my body moves on my videos, and they’re highly interesting to me in terms of who said them and what was said. It may have just made something click about what I see in other autistic people, versus what non-autistic people see in the same other autistic people.

A non-autistic person said that if she wanted to see an autistic person stim continuously for two minutes, she could just think back to her son doing “the exact same thing” all day long. She didn’t see the point of the video.

This is what Bryna Siegel, an autism “expert”, has to say about these kinds of movements:

Some repetitive behaviors that look odd an an older age would have seemed more typical at an earlier age. In treating some overly repetitive behaviors, the same approach can be taken as with some persisting undesirable behaviors in typically developing children, like a seven-year-old’s sucking his thumb, or a four-year-old’s still in diapers. The parent can just set things up so it is more rewarding to stop the behavior, and less rewarding to continue the behavior. This is what “redirection,” moving a child to a nearby, acceptable, alternative activity is all about. Sometimes parents ask if it will be harmful to make the child stop flapping his arms, staring at postured fingers, or tapping objects held to the eyes. I’m asked, “Does he ‘need’ to do it?” The answer really seems to be “no.” The main reason to stop some stereotypies is that (like thumb sucking) they may have a self-satisfying quality that tends to promote withdrawal from the rest of what is going on around the child.

By contrast, two autistic people said they saw something very recognizable in my movements in the videos, in that they seemed to be intelligent rather than random. One of them added that my mannerisms made no sense with the sound turned off, but with the sound turned on, they were clearly integrated with the sound.

While the idea that these movements are voluntary was incorrect on the part of one of the autistic people watching the video, I know what they were picking up on. I physically — through my body — get into the pattern of what is going on around me, including but not limited to sounds. My body movements are not random events tied to nothing, but are a pretty complex automatic system for dealing with, among other things, sensory input. I’ve found over time that hindering them, in addition to being impossible to sustain (and more and more impossible to sustain over time, for that matter) is a bad thing for understanding my environment.

Two autistic people viewing the videos picked up on the pattern behind this, and said so in rapid succession a few minutes ago. While these movements are non-deliberate (and the non-deliberateness can lead even an autistic person to assume there’s no point to them if that’s what they’ve been told), the idea that they are intelligent in a sense is probably right — they are not random, they are not tics (I have tics, these are not tics), they are in a way complex physical expressions of my surroundings. I don’t think “I’m going to do this now,” but they are actually a physical part of my thought processes.

But what’s interesting to me in all this is that it’s autistic people who noticed. I notice these things in other autistic people, and it’s one of the reasons I find it so hard to understand other people’s assumptions about us. I see autistic people reacting in complex and detailed ways to their surroundings, and I see a pattern. This is totally the opposite of how other people (some autistic, some non-autistic, but more non-autistic percentage-wise I think) perceive how we move, as far as I can tell. So much for the “purposelessness” of autistic behavior.

I wonder, if I saw the son of the woman who said that her son used to do the exact same things as me all day long, if I would find his movements totally comprehensible rather than “symptoms” of something.

According to the standardized tests that were used on me physically for gym class in school, I was decidedly unathletic.

I could not do a single pull-up, therefore I lacked upper body strength. I could not run the mile, therefore I lacked endurance. I could not bend my arms past my legs a certain amount, therefore I lacked flexibility. I could not do a very specific test of running back and forth after a target (that required a lot of rapid turning and stopping and starting), therefore I lacked agility.

I took for granted all of these things for a long time, because they were what had been said about me.

Take a look at these photographs.

Tell the kid who hiked across a mountain range to the ocean, who could walk as far as she wanted to without getting particularly tired, that she lacks endurance.

Tell the kid who scrambles rapidly up trees and balances easily on fences and rooftops that she lacks agility and arm strength. (By the way, with regards to arm strength, my father used to lift very heavy weights but could never do a pullup either.)

And tell… uh… a kid who can bend her legs into that position, that she’s just not flexible enough. And tell this kid, in general, that she’s unathletic.

I spent years believing that I had no flexibility. I found out later that my arms are so short proportionally that there’s no way a standardized test could measure flexibility that way by standardized means. One of my friends was shocked to hear I thought I was not flexible. She told me that people who are not flexible, cannot step on their own head the way I can.

I spent years believing I had no agility, despite the evidence that when a situation triggers me into action, rather than consciously doing things, I can still do some pretty incredible feats of agility even though the rest of the time I have to use a wheelchair for more conscious movement.

I found these photographs while I was looking for something else (which I’ll post some other time). But I think they prove a really interesting point about how much standardized testing will tell you about a person, physically or cognitively. It’s not that there’d be anything bad about me if they were right, but boy were they ever wrong.

By the way, I got the lowest score possible on the communication section of a standardized test last year. I’ll let my blog speak for itself.

I didn’t know Norm Kunc and Emma Van der Klift had made it to Youtube, but here’s a video they put there, made by San Luis Obispo People First. If you can get it to play, please watch it all the way through. (It’s open-captioned.)