Monthly Archives: June 2007

No Good Guys or Bad Guys Here

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I wrote most of this post a few days ago, but was really tired when I wrote it so I wanted to make sure I’d written something decent on the topic before I sent it out. I apologize for getting this out later than intended and therefore possibly prolonging something.

I’ve gotten a lot of responses to my “mental age” post acting like I’m accusing people of being something called bad parents or bad people. It’s interesting. I’ve seen a couple different bloggers recently complain about generalized things, and get castigated for not bringing up specific instances. I brought up specific instances of the usage of certain concepts I believe to be really harmful to people (in the real-life sense, not the hurt-feelings sense) and instead I’m being treated as if I’ve got something against a particular person, even been accused of attacking, bullying, etc.

Here’s my worldview on this sort of thing:

I don’t think there’s good guys and bad guys in the world. I think humanity is an interesting mix of good and bad and everything in between. I think every one of us does things right and every one of us does things wrong, some more than others in either direction, most of us a whole lot of both.

I do suspect there are people who see the world as good guys and bad guys. That worldview would be more likely to make a person panic when someone doesn’t like what they’re doing, thinking, or feeling. “Oh no, that person’s saying I’m a Bad Guy.”

No, that person’s saying you’re human. Being human doesn’t let you off the hook for doing something wrong. But doing something wrong doesn’t negate everything good you’ve ever done. And it’s important not to get your sense of self-worth all tied up in whether you’re doing good things, because that actually makes it harder to do the right thing. Because it makes you want to think you’re doing the right thing even when you’re not, so that you can keep up the belief you’re a good person. And when you want to think you’re doing the right thing even when you’re not, it’s easier to just go into denial when you screw up.

Not that I’m the ultimate arbiter of what’s right and wrong obviously. But I do mention when I see something I don’t think is right. The reason is that I’ve learned a lot when people mention stuff to me. I don’t always agree with them. Sometimes I very much don’t agree with them. Sometimes I disagree with them and later come to agree with them. Sometimes I can see their point right away. Someone on the comment thread seemed to have me pegged as someone who sees the whole world as my enemy, and I can pretty safely dismiss that one as someone who doesn’t know me.

But when someone yelled at me emphatically that I shouldn’t talk about my older brother like he wasn’t my older brother… I listened, and I learned, and I changed. If nobody said that I’d still be saying it. I was taught growing up explicitly that he wasn’t necessarily “older” than me, that he’d stopped maturing at the age of fifteen or so. This wasn’t true. It wasn’t real. But it’s a commonplace belief about certain kinds of people. And the people who taught me that belief learned it from someone else. And I learned it from them. And others doubtless learned it from me until I learned to stop saying things like that. But I didn’t learn it from having everyone “validate” my feelings about being the sibling of someone with a disability. I learned it from hearing the uncomfortable truth about what those views really mean.

I’ve noticed that most of us who talk about certain things like this being wrong, come from a position like mine: We know that everyone is prone to this stuff, we know that framing it in terms of good person/bad person, good parent/bad parent, isn’t useful. We know that we are susceptible to it as much as anyone. We know that it doesn’t make us “bad guys”. We know that even the defensiveness around it is something anyone can get prone to, depending on circumstances, and we know we’re not perfect either and never going to be, but we don’t think being imperfect in this regard means you stop trying or use the general fact of human imperfection as an excuse.

I mean… if I praise what someone has done, does that mean I like everything they’ve ever done? No. I have friends and allies online and offline that I disagree vigorously with on a number of important issues. A lot of the time we even talk about that stuff. And somehow it’s okay. Somehow when we do it it’s somehow known that this isn’t personal hostility going on.

I do, by the way, understand the motivation of wanting to validate the feelings of other parents. I don’t happen to think it’s worth the cost to people with disabilities (and particularly people with developmental disabilities, and more particularly people with — or assumed to have — intellectual disabilities, who bear the absolute worst brunt of these attitudes). The cost in actual impact on our lives of having these views spread around like this as if it’s normal to think these things about us. I also think there are ways to discuss this that say “Yeah this is normal, but it’s because we learned it somewhere, and this is a bad thing to have learned, and here’s why.”

In this case it’s not a matter of not understanding that some people want their feelings validated, it’s a matter of not agreeing that this is a good priority when there are other things that take priority first like the impact on people with developmental disabilities in general. Would I rather validate the feelings of parents who might feel really alone in thinking certain thoughts about their children? Or would I rather make sure that adults I know (and in some cases, am) who struggle to get taken seriously as workers, voters, sexual beings, people who can live on their own if they want, and adults in general, actually get taken seriously in that regard? It’s an easy choice to me.

It’s not that I don’t understand the feelings exist, or that people want their feelings validated. It’s that I think there are more important things in life than validating feelings that arise from harmful prejudice that directly impacts the lives of an entire group of people. And that in fact I find the whole goal of validating feelings that arise from harmful prejudices ethically questionable at best. There are plenty of better ways to discuss them, such as “How did we come to feel this way? What taught us these things? How might these things harm the people they’re directed at? Are these ideas really as innocent as they look?” And again I’m not exempt from that process of questioning.

But it’s hard to even have a discussion of this sort of thing, when at the slightest hint of saying that someone’s doing something I happen to think is wrong, then they’ll go “Oh no you’re calling me a Bad Guy” or something. Compounded by the fact that when it’s an autistic person and the other person involved happens to be a parent, you’ll hear “You’ve never been a parent” (even if you are a parent) and “You’re attacking parents!” or “You’re calling us bad parents!” (even if you’re not).

It’s also hard to have a discussion when there’s various unwritten rules of etiquette that can be invoked no matter what you do. If you post broadly and anonymously, you can be told you’re not producing sources to back up your claims, and that people don’t need to listen to you because of that. If you post specific examples, people can tell you you’re attacking a person, and a specific one at that. If you post publicly, you can be told you should’ve taken it to private email, and it’s again assumed that you only need to say this to one person. If you post privately, you can be told you’re being invasive. If people don’t listen to you, people can blame everything from your writing style to your presumed emotions about or motivations for the whole thing. And the whole thing can always be taken back to being about insults and personal feelings, on a level playing field, even when it’s about issues that affect some people more than others, on a direct and sometimes survival-based level, on a very topsy-turvy playing field indeed.

But bottom line: There’s no good guys or bad guys in my view of the world. It just doesn’t divide up that way. I don’t hold anyone exempt from the idea of doing things right, or doing things wrong, and I don’t see doing things wrong as meaning someone’s something called a “bad person,” or someone doing things right as meaning someone’s something called a “good person”. These are not useful concepts when dealing with me on these issues. There’s also, with regards to prejudices, no such thing as “the sort of person who wouldn’t do that”, and calling someone “the sort of person who would do that” (which is generally seen as some kind of ultimate insult) is another way of calling someone human. Anyone who thinks I’m calling people bad guys or the enemy for this, should probably look to their own views of what bad guys, good guys, and enemies mean.

Little phrases.

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This week.

I just put that phrase in a sentence starting, “Whereas for quite some time this week I’ve had the ideas…”

But I didn’t mean this week. I meant, this-arbitrary-measurement-of-chunk-of-time-longer-than-a-day.

I could’ve said, the past few weeks, this month, the past few days, last month… those are all phrases in my repertoire for that kind of thing, and they pop out interchangeably.

This is, I suppose, one of the hazards of using and learning language by pattern. Especially when I’m tired, I’ll know which phrases “sound right” together, and “go right” together, but it’s really, really easy to forget to check them against what I’m actually meaning. So “some kind of chunk of time” simply becomes substituted with any chunk of time. A particular topic area gets substituted with its opposite without noticing, because both are connected in some way in the pattern system in my head.

And my speech seems irreparably that way, patterns devoid of internal meaning for the most part, or only tangentially tied to it. But somehow, even though I’m clearly using the same mechanisms while typing, they seem to be tied closer to thought and experience and so forth. Except when I’m tired or hungry or sick or overloaded or something, at which point things start falling apart more.

What people will notice if they see me type, is that while I make the usual kind of typos sometimes, the most common kind of typo I make is a whole-word or whole-phrase typo. My fingers will spit out a phrase that is not the one I want and I have to delete and go over it several times to get the one I do want. I’m not talking about subtle variations, either. I’m talking about things that change the entire meaning of a sentence, but that don’t have to sound as if they’re wrong somehow.

It seems like, there’s a phrase machine somewhere in my brain, and it spits things out without my thinking about it. It spits out words, or chunks of words, according to pattern, not according to tying back to something in my head or in my experience. It does this automatically and my job is to insert the right meanings so it doesn’t veer off course somehow.

It’s very easy to get it to veer off course, too. Consider the following sentences: It seems like, there’s a phrase machine somewhere in my brain, and it spits things out, because they’re supposed to be there. It seems like, there’s a phrase machine somewhere in my brain, and it spits things out, in order. It seems like, there’s a phrase machine somewhere in my brain, and it spits things out, that are closer to one thing than another. Those sentences are all of course demonstrations of the phrase machine in action. They make sense, but they’re not necessarily what I’m trying to get at at all.

I have noticed, though, that there’s a quality to this, that I can sometimes see in other auties, when they are struggling with language, yet still appearing fluent in whatever their preferred form of language (written or spoken) is at the time. One of the first signs I see is a sense of disconnection from the words in the person making them. Even if the words are the right words, the person somehow sounds far back in their head behind their voice, as if their voice is a wall in some respects rather than a messenger. There’s a distance there, and it’s even more obvious when the person is clearly using a lot of stored phrases. I don’t know how I hear those things in other people, though, I just do.

And that is the ramble I have created on the basis of a simple-looking time error in a sentence.

Editing.

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Mom26children has written a post about the assumptions people make about her family based on their television appearance. I can identify a lot with what she writes. When CNN came to my apartment, they took two days of footage for that one ten-minute segment. As Mom26children says:

Some of you guys question the severity of my children’s autism by what you saw on an hour show. With commercials, you had 45 minutes into my very “edited” life.

I’ve been asked privately to clarify a lot of things about the CNN show, but I haven’t had the time or ability to think back on it much without the chaos of the whole thing being rather overpowering. But I think I’m finally at a point where it’s distant enough I can say this stuff without my head getting tangled in a lot of overloading memories.

That’s one thing right there: The whole experience was me under overload. It does not show how animated I usually am, and even the parts of the show where I did show more animation didn’t make it into the final product. I am remembering in particular when Laura brought baklava over, and they were excited to get footage of me squealing and flapping and smiling. But that didn’t make it into the final video.

They didn’t show me running away from the camera for most of the first morning until I got used to them.

Some funny things didn’t make it into the video, too. I still want to know what CNN does with some of their funnier footage. At the dog park, they trained the camera on my dog. Right as my dog peed. And right as another dog came up behind her and drank the pee. Which had all of us cracking up, but we knew they wouldn’t use that. I guess it’s sitting in an office somewhere if they don’t throw it out. They ought to do outtakes of their news shows.

They showed us at the dog park, but they did not show me after I took my jacket off and had a wide patch of my back exposed, and my staff was chasing me around trying to pull my shirt down while I didn’t get what the big deal was. They also didn’t show Laura explaining to me later that not being able to feel the cold doesn’t mean I won’t get frostbite.

They did not show even a little bit of the interview with my case manager. They interviewed him about his experiences with me and with autistic people in general. He also showed them all the equipment in my apartment that assures that I can get support at night without needing a roommate. (I am thinking of making a short video on that because it’s a really important idea that not a lot of people have heard of.)

There was also a lot of time they spent interviewing me that they of course didn’t have time to show. When they did show it, they did not show the reporter that interviewed me, they just showed Dr. Gupta. The reporter and the cameraman and sound woman actually spent the most time with me, Dr. Gupta was only there for a couple hours to interview me on the second day.

They showed the dentist’s appointment, but not really anything that happened within it, maybe due to confidentiality or something. What happened was the dentist basically assured me there was nothing mechanically wrong with my jaw to cause any pain. (When I saw the jaw specialist a couple weeks later, he did imaging and found that in fact my jawbone is underdeveloped in general, and the rounded area that the jawbone is supposed to rest in, is supposed to be deep and round, but mine is shallow and flat, and that I clearly have mechanical trouble closing my mouth and keeping it closed, as well as dislocation and pain and all that fun stuff, for reasons related to that. The dentist I saw on the show is no longer my dentist for that and various similar reasons, as well as my learning through word of mouth that his practice has a bad track record with autistic patients.)

There was also a lot of misinterpretation.

I suppose it makes better drama to say that I banged my head because I was an intelligent woman who felt “trapped” somehow. But really it was just because I made a typo and I was already stressed out. It was the first time I had banged my head in months, but they played that clip over and over.

I actually told them in great detail why I used a wheelchair, which has to do with a combination of assorted physical problems and a parkinson-like movement disorder I have. I told them how I waited until I was otherwise basically stuck in my house before deciding to get one, and how much more exercise and exposure to the outside world I got now that I had the chair. I told them about previously going out in groups at agencies and holding up the group when I’d freeze, and how another client used to comment they needed to get a giant spatula to pick me up. And so forth. Then I later told them that when I was lying down on my friend’s couch it was easier for me to think to answer questions, and that I’d have preferred to do the interview lying down for that reason. Somehow my reason for lying down for the interview got translated into “why I use the wheelchair” and they broadcast that information instead of all the previous information I told them. They said that I used it to make it easier to think, and while it is easier to think while not concentrating on walking, it’s not my primary reason for using the chair.

I think they were among the many people who greatly simplified the history I actually gave them of my life. That makes sense given the amount of time they had. But I told them a lot of complex stuff about my speech history that got simplified into something much more abrupt and sudden (which is what most people do to it, complexity doesn’t make for good sound bites). We discussed thoroughly why I was considered additionally to be psychotic for a long time, and they discussed that with my case manager as well I’m told. I explained all about elves and hiding in stereotypes and psychiatric force and everything else. I suppose that was too complex too.

I told them that I did not live in my own world, I told them this emphatically. While this did make it into the second segment, the lead-in to the first segment was still somehow about how I was trapped in a world of my own. (The people I talked to at CNN were not the editors, and did not even themselves have editorial control over the content of the shows.) I told them how I disagreed with the mild/severe and HFA/LFA dichotomies and stuff but everyone by now knows what they said about that.

I told them how the video I made was not actually about autism, it was a response to the situation of Ashley X and anyone else where people assume a lack of standard communication means a lack of standard comprehension and that a lack of standard comprehension means a lack of humanity and lack of value and lack of personhood and lack of basic human rights. Like many people, they still portrayed the video as being about my wanting to take people into “my world of autism”.

They of course also did not show me after their team left on the second day, while I was lying on my friend’s couch uncontrollably ticcing and screaming, something my body reserved until I was in private and familiar enough surroundings to do that sort of thing.

They didn’t show when communication broke down, they didn’t show how I struggled to find words a lot of the time, they edited out most of my typing, they edited out a lot of the parts where I said things I didn’t quite mean to say or didn’t understand what I was saying, they edited out the times when my friend had to interpret for me.

They didn’t show a whole lot of my staff, despite my staff being there most of the time, and despite my staff actually having spoken on camera on a number of occasions, as well as spoken to them directly about me, they didn’t use any of that.

So basically, they did not show some of the things I was capable of, they did not show some of the things I had difficulty with, and they simplified a lot of aspects of my life to fit into a ten-minute segment. This is standard for the sort of thing that the media does. I actually found it quite a lot better than I expected despite these problems.

When you see someone on television, you can’t know all about them. It’s not a standard situation. There’s editing. There’s nervousness around the cameras and the intrusions. There’s the fact that you’re only getting a tiny slice of a much broader life. You can’t know what that person is like when the cameras are gone, you can’t know how they move and behave every second of every day, you can’t know their abilities, you can’t know their difficulties, you just get a tiny snapshot of their life framed in whatever way these virtual strangers want to frame it. The person themselves has no control over the editing, nor often do the reporters. Anyone who thinks they can tell all these things about a person based on a news story doesn’t really know how these things work.

And that goes for my own videos too by the way. Seeing me for a few minutes doing things specifically intended for broadcast on the Internet doesn’t equal seeing me all the time either. They are of course more accurate than something made by a stranger will be, but they’re also only tiny slices of my life. Even my blog is only a tiny slice of my life, you don’t see how I live every day. Larry Arnold as well has written about that one.

If you recognize me.

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This is a purely pragmatic post I’m trying to write here. I don’t mean any offense to the guy I talked to today. I know he didn’t mean anything bad and didn’t know any of this stuff. He was perfectly nice to me and had no way of knowing what was going on. Etc.

If you recognize me in public. And you don’t know me. (Knowing me online counts, as in interacting with me a fair bit on blogs and lists and stuff. That’s fine. That’s knowing me for these purposes.) There are some things you might want to know before you decide to strike up a conversation.

Today was one of two days this month I’ve been outdoors for anything other than a medical appointment. I was going to the bookstore and then I needed to take care of something at the bank. The reason I haven’t been able to go out much is the grass pollen, which is my most severe allergy, and I’m still not fully back to normal from the last asthma mess. (That’s why, if I’m outdoors, you’re likely to see a pollen mask on me, although I take it off indoors.) As in, I haven’t even crossed into the mild range of asthma yet, although I’m getting better.

I can only go out when there are staff with me. Staff come in shifts at certain hours. The morning shift ends at 12:30.

I was on my way out of the bookstore around 11:30 when someone saw me, said he’d seen me on TV, and struck up a conversation. I have a very hard time getting out of conversations. I wish my staff had been there. She wasn’t there that moment because she was going outside for something. I had no way of contacting her. When I’m concentrating on talking to someone I have a really hard time simultaneously figuring out how to stop talking to someone and why to stop talking to someone (or why to do anything for that matter). It took everything I had to get out of the conversation half an hour later.

Half an hour later it was too late for my staff to take me to the bank. It was also too late for her to wash my pollen mask, a task which had to be moved to the next shift, and depending on how long it takes to dry it might affect my ability to go out to a planned event tomorrow.

I am not trying to be unfriendly. I am not trying to imply that anyone who has done this to me has caused all these things on purpose. But please be aware that if I’m out lately, I’m out on a time schedule, that the amount I have to go out affects my health in various ways, etc. So I might make an exception if I already know the person (the same way most people would make some exceptions, even ones that change their plans or health, for unexpected friends, including online friends), but if I don’t know you already, then getting to know you right then isn’t going to be the best time. And that since I have a really hard time disentangling myself from conversations (because of the amount of attention the conversation itself takes), it’s probably better not to start one unless you’re going to introduce yourself as someone I already know or something, because staying in a conversation with you for half an hour doesn’t mean I want to, it just means I’m doing what I think I have to, which is come up with new things to say in response to whatever I can parse out of what you’re saying (and I am likely parsing far less of what you’re saying than it might sound like, I’m very good at sounding like I know what people are talking about when I don’t).

And (probably obviously) this doesn’t apply to social events or conferences where the point is partly to meet new people. And unfortunately probably most of the people likely to do this to me have not read this blog. But I thought it was worth mentioning in case anyone runs into me in a store or something (this sort of thing has now happened more than once, including while trying to visit and advocate for a friend in the emergency room, although in that case the friend was recognized too I think so that got interesting).

Addition to library: And people still fail to get it, again and again.

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And People Still Fail to Get It, Again and Again

By a student who’s been fighting for accessible education for a long time.

Quote from it:

These things– accomodation, and related issues– are rights, not privileges. But even if I can acknowledge that intellectually, I’m so used to having to shut the hell up in order to get anything at all that my gut reaction when anyone gives me any kind of accomodation at all is fear– waiting for the other shoe to drop, waiting for them to decide I’m a horrible person who’s just making excuses and is trying to drag out some manipulative game to see just how much of a free ride I can get, and to decide I deserve nothing at all. I’m seen as some kind of puppetmaster, when in reality I’m the ones on the strings being jerked around at everyone else’s whims.

I don’t think people get it. I expect nothing. I expect nothing to be given to me. I expect to be called a liar and manipulator and an excuse-maker and to be told that the system owes me nothing and that I can sink or swim. I expect to be forced to plead, beg and grovel in order to get any kind of accomodations at school, extended deadlines and the like, and to be seen as a manipulative liar if I still can’t do it. I expect to be forced to beg like a dog for food, or water, or sanitary napkins, or the right to go to the bathroom, or similar things, and perceived as a childish brat who needs to be punished and taught a lesson. I don’t know how to communicate to people that I expect nothing, or how to stop them from believing I have a sense of entitlement, when in fact it’s exactly the opposite. The fact that I expect nothing doesn’t mean I should receive nothing, but it does mean I expect nothing, and people should take that into account when working with me.

I have to say I identify with all that. I don’t actually expect to be taken seriously or treated like a human being.

Mental age is not acceptable.

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In the posts about Ashley X some people have been referencing mental age again. Then Susan Senator posted the following (emphasis mine):

I can’t help it. I love Nat with all my heart, the Nat I know and have adored since the moment I felt him in my womb. But in this photo I see the Nat I might have had, truly older than Max, mischievous, teasing, strong, his own person, about to go off into the world without me.

(I’m going to skip over the idea that Nat is not strong, not his own person, and that it’s not possible for him to go out into the world without his mother, and just focus on mental age here, but those are problems too.)

Please get straight what mental age actually is: It’s a myth. It says that if you score the same level on a certain test, that the “average” person of another age does, then your mind is really that age. That means that at the age of five my mental age was supposedly eight, at the age of fifteen it was supposedly eighteen, and at the age of twenty-two it was still supposedly eighteen. (Unless all my calculations are off.)

Do you really think that at five, I was somehow like an eight-year-old? I was not like any eight-year-old I’ve met. And at the ages of fifteen and twenty-two I was not like any eighteen-year-old I’ve met. I was eighteen when I was eighteen. Period. That’s the only time I was ever eighteen. Do I think differently than others? Yes. Am I a different age than I really am? No. Is it useful to construct me as if I am? No, it’s detrimental.

To say someone has the mind of a child (or an adult) because of a test score is like calling them a cat because they can’t fly. It’s nonsensical. It’s offensive. It’s responsible for some of the worst atrocities towards people with intellectual disabilities. And it’s not okay.

This is similar to those diagnostic parlor games that some autistic people like to play, while other autistic people are in the psychiatric system. Only this is idle musings about “mental age” instead of about the fine details of whether someone’s a sociopath or not. It’s just as bad. It does just as much damage. It should be accepted just as little. Mental age is not an okay construct to run around playing with. It’s a dangerous one, it costs adults our autonomy on a regular basis, it’s the basis for most of the restrictions placed on people with developmental disabilities, and it is not okay no matter what the excuse. People who purport to support the rights of people with developmental disabilities ought not to invoke it.

Future Video Projects

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These are some (probably not all) of the projects I’m working on.

Having a future (started October 2006)

I have been working on a video about having a future. It is aimed specifically at children like the child I was, who could not envision my place in society as an adult, and whose reactions to being unable to envision that place had drastic consequences in our lives. I want to show how there is so much more to our futures than the things we can imagine, or than the things others can imagine for us.

Recognizing and dealing with overload (started December 2006)

This video would also be aimed at autistic people, whether younger or older. It would be about how to recognize and manage overload, which are things a lot of us are never taught explicitly. We’re often not taught them because acknowledging the existence of things like overload and shutdown would undermine a lot of “therapies” that say that it’s possible for us to behave like non-autistic people, consequence-free, if we just try hard enough. This video would reinforce our natural ways of dealing with overload and possibly add more if the person hadn’t heard of them.

Personal dictionary of facial and body expressions (started December 2006)

A lot of people can’t understand my facial expressions and body postures (or even accuse me of having none, which isn’t true). I’m not sure whether this video will be public or whether I will only show it to staff. I have been trying to drag the camera out every time I spontaneously am doing something related to emotions or even various physical states, in order to capture these things the way they are since I can’t really bring them on on purpose. This is taking forever, for obvious reasons. I don’t know if or when I will finish it.

More going on than people think (started June 2007)

I’ve been really sick for the past couple months, and have not had as much energy as usual. One day I was thinking of all this material that I needed to write or put in video, but the moment I actually moved to do it, I was unable to write it, everything would just fall apart the moment I started moving. So I set up the video camera, pointed it at the spot I was sitting, and sat back down and kept on coming up with ideas. If anyone had tried to hold a conversation with me at the time I probably wouldn’t have been able to. I still have that video footage, but have not attached the words to it yet. The words would convey how much more was going on in my head at this time than a person might expect, and how if I’d moved and become more interactive-looking I’d have lost everything I knew, and how many people in my life have accidentally reversed this, assuming the more “interactive” I look the more I am showing understanding and thought and stuff.

Variation among non-autistic people (not started yet)

Video of a non-autistic person in a lot of different situations. Commentary on the way that, for instance, in one situation she might be smiling and socially engaged, and in another situation she might be frowning and concentrating on something, in one she might be energetic and in another tired. Contrasting her mannerisms across different contexts. And then reacting to her in the same overly-suspicious way that autistic people are often reacted to when our movements or moods or abilities vary across circumstances.

Different levels of movement (not started yet)

Showing different kinds of movement, and the different levels of difficulty of each.

Note: On YouTube and LiveVideo I am silentmiaow and amandabaggs only. Anyone else claiming or appearing to be me should not be believed unless I change this space.

Comments from when this was a page not a post:

  1. Estee says:

    November 19, 2007 at 4:23 pm

    Fantastic!

How I Make My Videos

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A lot of people have asked questions about how I make my videos, so I’m just going to answer everyone in one spot. I’ll start with the technical stuff.

Technical Stuff

I used to use a digital camera that could only record a minute and a half at a time. It had no tripod mount so I had to set it on flat surfaces. Sometimes that meant stacking books up to get it to sit right, and it often fell over nonetheless. Then when I was on CNN, many of my relatives and a family from the neighborhood I grew up in saw me. Together they bought me a real digital camcorder with a tripod, which I’m very grateful for because it makes things a lot easier.

After I get the videos recorded, I transfer them to my computer. I can edit the individual videos in the software that came with my camcorder. Sometimes Windows Movie Maker will deal with those files, and sometimes it won’t. When it won’t, I have to convert them to another file format. I use a variety of freeware tools for manipulating and converting video files, because I can’t afford commercial editing software. I use RAD Video ToolsStoik Video Converter, and VirtualDub.

Then I put the videos and any effects I want together in Windows Movie Maker. I might record sound separately or straight over the video. I use a Dynavox VMax these days for spoken words, and may use my voice for other sounds like humming or singing, both of which I use an old, borrowed computer microphone for. Windows Movie Maker has a feature that allows you to record sound straight over the top of the video project. But sometimes I prefer to record it separately, in which case I use Audacity. Then I can just drag and drop that into the Movie Maker project.

After editing all that stuff is, I save the Microsoft Movie Maker project as a WMV file, which I then have to convert to AVI. Then I use the DivXLand Media Subtitler to add subtitles, and by then I’m usually done.

Other Stuff

Then there’s the less technical end of things. I don’t work from written plans or scripts or anything, although there is an element of planning involved. I know what I want to do and then I film everything I think I need for that purpose.

I’ve found that because I’m autistic there’s a strange expectation that everything I do on camera should be absolutely spontaneous, and that if it’s not there’s something wrong. This is not how most non-autistic people make videos and it is not how I make videos either. I use a combination of planning and spontaneity.

I’ll give examples from the video I made to show what happens when I try to boil water.

I had to show the ways that I respond automatically to various aspects of my surroundings. I did not wait until I was trying to boil water and then film my attempts to do so (which is what people in the “must be absolutely spontaneous” camp would expect of me). I set up the tripod in the living room pointed into the kitchen over the kitchen counter. I carried the remote control with me in one hand. And I walked in and out of the kitchen repeatedly.

The spontaneous aspect of this is that I did not plan out which objects to interact with, or how to react to them. That evolved naturally. I deliberately wandered around the kitchen in the manner that I do in real life, but the interaction with the objects was for the most part spontaneous, as was the stopping and not moving at certain points. The part where I sat down was my body’s attempt to take a break (I don’t normally stand as long as I did while filming this, I’m also physically disabled and normally use a wheelchair). It was a good deal longer than what I showed in the end product, and I just later filmed myself rocking from the back to fill in that gap where I sat down.

So there was that combination of deliberate planning of how the actions would take place, and then spontaneous reactions to things around me. That’s how most of my videos work, there is a combination of the two, just like there is in non-fiction videos by non-autistic filmmakers. Being autistic does not change this, it only changes what sorts of things spontaneity and plannedness look like.

I am actually working on a much more difficult video project, in which I really am trying to capture spontaneous expressions that I cannot do deliberately. I have been working on it for quite some time and it’s meant to be a dictionary of sorts of expressions, I don’t know whether it will be public or just for my staff. But it is much harder because I have to be able to set the camera up or have it set up already, while I’m still doing whatever it is that I’m doing. This is why most filming does not work this way. It’s also why this project has been going on since last December and I still haven’t come anywhere near to completing it, and why the parts I do have tend to be expressions of continuous things like pain or overload rather than fleeting expressions of emotions. (See Future Video Projects for other projects I’m working on.)

Why I Make My Videos

For the same reason that I write: To convey information that I think is useful to convey. It’s just another way of doing it, and one that I prefer in many respects. Because my interaction with my surroundings in everyday life is not word-based, it’s movement-based and all kinds of other things, and those are easier to capture on video than in a word-based blog. I really enjoy being able to communicate with people in other ways than words, and videos (even the ones with words) are useful in trying to do that.

Also, it’s one thing to describe at length what happens when I try to do things like boil water or cook for myself. It’s another thing to be able to show people, “Here is what happens, for me and a lot of other people like me, when we try to do these things.” It makes it so much more obvious how hard we are working, because it’s not just words, it shows what life is like for many of us, and it’s harder to ignore than just “And this is difficult for me.” It’s one thing to describe the way I interact with my surroundings, it’s another to actually show people, as in “In My Language,” the ways that have always (whether I’ve had words or not at the time) come more naturally to me than standard language has.

Also, a lot of people online tend to think that I and other autistic bloggers all somehow magically “look normal”. Videos counteract that impression quite well, I’ve found.

And I’ve found that it also lets people know they’re talking to a real person, not just a bunch of words on a screen. I’ve noticed that Second Life is often more civil than IRC even though they can be used for the same sort of chatting, and I think it’s because people can see that there’s person-like figures on the screen, and that they’re interacting with human beings, not just words. It’s harder to hate a person than it is to hate a bunch of words.

Hopefully that’s answered most questions people have about this stuff. I’ve tried to cover everything I’ve been asked about before.

Note: On YouTube and LiveVideo I am silentmiaow and amandabaggs only. Anyone else claiming or appearing to be me should not be believed unless I change this space.

Comments from when this was a page, not a post

  1. Rachel Hibberd says:

    June 18, 2007 at 4:39 pm

    If you do decide to share the dictionary video, I and probably many other readers will be thrilled. It would be interesting for us NT’s to get a “glimpse” (ignore all the “secret world” connotations that has) into other ways of communicating that are not verbal. Rather, I should say ways of communicating that are different from my way, since I also use nonverbal communication but in a more typical way.


  2. June 18, 2007 at 4:44 pm

    It’s actually not as much about a deliberate form of communication. As much as it’s about… like non-autistic people tend to have a ton of facial expressions and body postures too that are not deliberate. The difference is that my non-deliberate postures and expressions sometimes differ from theirs, and that gets confusing to them. So it’s about a kind of non-verbal communication (even if not deliberate communication) that everyone has, it’s just that mine’s shaped a bit different so I’m often assumed to not have it or to have a lot less of it than I do.


  3. June 18, 2007 at 5:50 pm

    I can see where a “facial expression dictionary” might be of interest to, and maybe helpful to, a wider audience (if accompanied, of course, with the reminder that autistic people, too, are going to vary at least as much as non-autistic people in facial expression and body language–this should be obvious but I suppose some ppl will need to hear it). I’m thinking here of parents, teachers etc who might know intellectually that “autistic body language may be different” but aren’t really sure what that means in pragmatic terms. It might give them a starting point in figuring out the personalized dictionaries of the people they parent or work with.

    At the same time, I can understand why you would feel hesitant sharing something like this with any random reader who happens to find your blog. It sounds like a very personal project, and it’s up to you to decide where your personal “boundaries” are. Perhaps one compromise would be to produce two versions of the video: a full length version for your staff, and an abridged version for the public that would contain only the bits you feel comfortable sharing with a wider audience, if any.


  4. June 18, 2007 at 6:00 pm

    Yeah, it’s personal, and so far I’ve filmed some things at pretty vulnerable moments. I’m not sure which and how much of it I’ll be willing to show in public once it’s done, but the idea of two versions is a good one.


  5. June 18, 2007 at 8:41 pm

    One advantage of the protracted process in making this video is that it gives you plenty of time to decide just how far your comfort level goes vis a vis showing whichever parts of it in public. Good luck with that.

  6. Rachel Hibberd says:

    June 18, 2007 at 10:21 pm

    “So it’s about a kind of non-verbal communication (even if not deliberate communication) that everyone has, it’s just that mine’s shaped a bit different so I’m often assumed to not have it or to have a lot less of it than I do.”

    Gotcha. Still sounds cool, but don’t let me talk you into posting something you’re not comfortable with. I wouldn’t want some of my nonverbal communication on the internet either (for example crying), even though I am accepting of my personality style which includes being easily brought to tears as a way of coping with frustration.

  7. Ivan says:

    June 22, 2007 at 5:13 am

    I’d love to start making vids myself……even if just for me…….I’ve imagined so many in my mind already……..

    Ivan

  8. Sparrow says:

    June 27, 2007 at 7:31 am

    “I’ve noticed that Second Life is often more civil than IRC”

    Many people told me I would love Second Life so I visited. I have been treated poorly in IRC, but it could never have prepared me for what I experienced in Second Life. Three people started punching and hitting my character so that I was flying out of control through space. They were making audible laughing sounds and typing things that I will not repeat but that lead me to believe they were enacting a rape scene on me.

    I logged out and never went back. I still feel like crying when I remember it and then I feel stupid because it was just a bunch of computer drawings, not a real rape.


  9. June 27, 2007 at 2:25 pm

    Internet trolls are everywhere, on Second Life they’re called griefers. But the general atmosphere aside from the trolls still seems more civil overall, when you get the same groups of people and compare their behavior between both.

  10. Sparrow says:

    June 27, 2007 at 11:32 pm

    I guess it’s easier for me to deal with being on IRC and having people come into the channel and call us ‘tards than it is to watch the person I lovingly created getting punched and raped.

    Though I don’t go to IRC very often, either. Live chat moves too fast for me. I type fast, but I don’t think fast enough to participate in a conversation flying by on the screen.


  11. June 28, 2007 at 12:12 am

    Sparrow — I’ve never tried Second Life or any of it’s variants, but I think if I had spent a lot of time and energy creating a character who I think of as “me” (or at least, my representational alter ego or whatever), I would find it disturbing to watch that character be hit or raped on the screen, too. Even if it wasn’t a “real” rape, it was still — well, I don’t know what to call it (verbal abuse? sexual harassment? on-line bullying? they have a bunch of terminology out there for things people do to each other that violate boundaries, hurt or scare or upset people etc. But the labels don’t really matter much I guess. The consequences do.

    Sorry that happened to you :-(

  12. n. says:

    July 5, 2007 at 1:37 am

    sparrow, don’t know if you are still reading here or not but i had some ugly stuff happen to me on SL and it freaked me out, but now i mostly stay with the Autistic groups or occasionally with some other groups of people i know and it has been ok since. on the ALF land we have precautions against griefers, so they can’t do *some* of the stuff they like to do. and if they do any other stuff we just EJECT-BAN ‘em. i would say, give it another go and come visit us, but it’s up to you.

  13. Melody says:

    October 28, 2007 at 11:39 pm

    I probably missed this, but I was wondering how you transfer from the camcorder to the computer. In my classes for Film and TV at my school, we use tape decks to digitize from mini DV tapes into digital files, but these are really expensive (in the thousands I think). I was wondering if you are using and/or know of a cheaper way to digitize files. I use Final Cut Pro to edit (I am still an amateur, just began making videos in mid-September 2007), although I don’t imagine that this would be a difficulty, as I can convert from Windows Media format to Quicktime files. I am AuRatio on YouTube. I still need to upload my finished Water Quality PSA.

    It was nice that you have shared your insight of how you create these. I have not yet made a video of the sort that you have (in that sense that mine have not been about autism, or mistreatment of people, or other such issues as this). Certainly you have inspired me in writing fiction about social issues as well as to make communication (through film and through essays) nonfictionally about the issues.

  14. annette says:

    February 29, 2008 at 5:16 am

    I saw your video, and it was so beautiful.

    I especially like the soundtrack.

    Your explanation of interacting w/ the environment is very helpful. I see that recently I may have totally misinterpreted a guy w/ autism movements as frustration (someone else interpreted them as aggression) .. I guess we tend to project our own concerns on those we don’t understand.

    anyway thanks for your movie and your words


  15. March 1, 2008 at 1:05 am

    It could easily be frustration or a number of other emotions as well. Not every person does the same things for identical reasons.

  16. Melody says:

    March 1, 2008 at 11:44 pm

    Yes. Recently my dad asked, with some degree of concern, that he seemed to be noticing me rocking more lately. I explained that just because I rock doesn’t mena I’m stressed, but it doesn’t rule it out, either. One of the ways I respond to stres is by rocking. It’s also just how I am at other times.

    Then, he told me, that when he was younger and he rocked, that it was about having so much energy, and that was one means to use it, but that he didn’t want to just assume that because I do the same thing that I do it for the same reasons.

  17. Jennifer says:

    March 21, 2008 at 10:59 pm

    I recently picked up a mini DV camcorder so I can start making so youtube videos. As far as transfering vids goes. My camera can plug into the USB port on my computer. I can then record with windows movie maker. Basically anything on my cameras screen or viewfinder can be recorded onto my PC. It can be live video or stuff I am playing back on the tape. Given the cost of DV tapes. Most of my videos will probably be recorded straight onto my PC or laptop rather than on a tape.

  18. Ettina says:

    March 26, 2008 at 5:18 pm

    Pretty off topic, but – how do you get autistic gestures and gait in second life? I want my character to act more like me.

    What I really want is:

    * a hair-twirling gesture, especially if I can do it fairly continuously

    * a hand-flapping gesture, especially combined with jumping and trilling

    * ability to sit with knees against chest, especially if I could get my character to automatically do that whenever I stand still longer than a certain time

    * walking with arms bent near chest rather than straight


  19. March 26, 2008 at 7:19 pm

    You can get any sort of gestures you want, if you learn how to work an animation program like Avimator.

    And learn the different override levels (because different ones will override only certain amounts of the built-in gestures, with different consequences).

    And use an Animation Overrider to put the animations into it and set the settings so it uses the gestures you want.

    I have given out of a few of mine to other autistic people, but I haven’t been able to get on much lately or I’d offer to make those for you. (I can also normally customize people’s avatars for realism in appearance, to a point at least, but I have to have a pretty good idea what they look like first, and I have to be up to spending long amounts of time in SL.)

    If I end up in SL a lot again I’ll try to make some animations for you.

  20. hyd says:

    April 3, 2008 at 4:39 pm

    hey amanda. love your site. what software do you use to add captions to the bottom of your videos?

  21. Joanini says:

    April 16, 2008 at 9:37 am

    Everytime I am able to check out your site, I am ever grateful that I stumbled upon it.

    I hope to share your site with other compassionate people and I wish you the best.

    You and your community ( which is also part me and mine) are very dear to me.

    I hope you continue to share with the world your insight and your gifts as well as those who join you.

    Sincerely and with admiration and gratitude,

    Joanini

  22. Melanie Garn says:

    April 25, 2008 at 6:33 am

    Love your video’s and the seemingly random sounds, and the humming is beautiful! yeah you go girl!

    Melanie

  23. charlotte stace says:

    May 6, 2009 at 5:50 pm

    do you know who coined the term curebie and when where first in print

     

  24. Hilary Ann says:

    August 2, 2009 at 12:15 pm

    Re: “Yeah, it’s personal, and so far I’ve filmed some things at pretty vulnerable moments. I’m not sure which and how much of it I’ll be willing to show in public once it’s done, but the idea of two versions is a good one.”

    I am just amazed that after all the bullying, the ignorant and insensitive and even over compentatory comments you get, that you’d even be willing to share anything. Never mind opening it up like this. When I read about what goes on in chat sites, I am horrified. I don’t know how you handle it without getting all bitter about humanity in general. You have a generous soul. I don’t want to gush (so I won’t) but fact is that it has impacted me hugely. I hope that for the sake of those who actually do want to understand and to communicate with the non verbal, you’ll put it out there at some point. Maybe if you charge for it, it will keep the bullies and nuckleheads out.

    Thanks again for your videos and your blog.

“Been there. Done that. Preferred to grow.”

Standard

Found through a post at Moggy Mania:

The other story from a ‘Pillow Angel’ Been there. Done that. Preferred to grow.

I’ve read McDonald’s (auto)/biography before. And she has a webpage here

A quote from her article:

At the time of the initial publicity about growth attenuation, Ashley’s parents wrote on their blog: “In our opinion only parents of special needs children are in a position to fully relate to this topic. Unless you are living the experience, you are speculating and you have no clue what it is like to be the bedridden child or their caregivers.”I did live the experience. I lived it not as a parent or caregiver but as a bed-ridden growth-attenuated child. My life story is the reverse of Ashley’s. Like Ashley, I, too, have a static encephalopathy. Mine was caused by brain damageat the time of my breech birth. Like Ashley, I can’t walk, talk, feed or care for myself. My motor skills are those of a 3-month-old. When I was 3, a doctor assessed me as severely retarded (that is, as having an IQ of less than 35) and I was admitted to a state institution called St. Nicholas Hospital in Melbourne,Australia. As the hospital didn’t provide me with a wheelchair, I lay in bed or on the floor for most of the next 14 years. At the age of 12, I was relabeled as profoundly retarded (IQ less than 20) because I still hadn’t learned to walk or talk. Like Ashley, I have experienced growth attenuation. I may be the only person on Earth who can say, “Been there. Done that. Didn’t like it. Preferred to grow.”

[...]

This may be because Ashley is described as having static encephalopathy, a rather uncommon name for a rather common condition. Static encephalopathy just means “brain damage which isn’t going to get worse.” It’s occasionally used as a euphemism for brain damage caused by maternal intoxication, but the most common form of the condition is cerebral palsy unrelated to maternal intoxication. Ashley and I both have cerebral palsy. Ashley’s doctors may have used the term static encephalopathy to avoid the outcry that would have followed if people realized that it was being suggested that girls with cerebral palsy should have surgery to stunt their growth and prevent puberty.

I’m particularly (but pleasantly) surprised that she stood up forcefully to Peter Singer, because I know he’s a personal friend of hers, and that people often won’t challenge their friends in public. And he was badly in need of challenging here by someone in the know.