Author Archives: Mel Baggs

About Mel Baggs

Hufflepuff. Came from the redwoods, which tell me who I am and where I belong in the world. I relate to objects as if they are alive, but as things with identities and properties all of their own, not as something human-like. Culturally I'm from a California Okie background. Crochet or otherwise create constantly, write poetry and paint when I can. Proud member of the developmental disability self-advocacy movement. I care a lot more about being a human being than I care about what categories I fit into.
Apr3

The obligatory post-CNN entry.

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I’m glad they got it reasonably accurate this time, and even finally included stuff from the interview with my case manager, although I still wish I’d seen more of the other people from the AutCom conference, since I know several were interviewed, and I’d participated in all of this mainly hoping that they would show me as only one of several people. (I’m hoping they’ll use some more of that later.) On the other hand, I’m glad they used more of that than before and emphasized that I’m not all that unique among the wider autistic community. And I’m slightly baffled as to why there were at least two parts of it that they repeated twice within the same hour, and one answer that seemed pasted in from a different question (I am pretty sure when asked why I made the In My Language video, I talked about Ashley X).

And also, my relationship with my friends is just that, we’re friends, I’m not some kind of one-way inspiration machine and I don’t aspire to be (that last link is very tongue-in-cheek).

If you’re new to the blog, some stuff that ought to be read first, although CNN did a more thorough job than before in covering some of that stuff:

Disclaimer on Assumptions, Let’s Play Assumption Ping-Pong, and Please Don’t Take Me As Typical are all things you might want to read if I end up not being quite who you would expect me to be, or if you expect my life, body language, etc. to correspond directly to every single other person who has the same set of labels I do. I try to cover everything that could surprise people, but I do forget stuff.

My comment policy (such as it is) is covered in some combination of the bottom of the About page and Gossip-Free Zone. The rest can be summarized by “Try not to be a jerk” (I’ll tend to delete that stuff, although if I have the time and there’s other substantive content I might just edit them). Be aware that my spam filters often mess up and throw things in the spam bin that are actually legitimate comments (this happens most often to Andrea Shettle for some reason, to the point where I search all spam for her name before deleting it). So you might want to keep a copy of your comment just in case. Things that are clearly intended to be private, I save. Things that aren’t but contain private information, I edit.

Assorted things I’ve meant to say, from the other side of the usual time barrier is something I wrote after the first CNN broadcast last year. And By the way… was my response to their amusing choice in music. Again. And Again. And Again. deals more indirectly with the process of being asked questions (including by CNN) that I had trouble answering. The awful prison of autism dealt with both self-consciousness during interviews, and the tendency for people to analyze everything an autistic person does in terms of autism. Editing described some things that didn’t make it into last year’s CNN broadcast (some of which did make it into this recent one). Post in anticipation of tonight’s deluge was an older post much like this one. Some quick corrections and clarifications was in response to the recent Wired article.

Hopefully that’s enough links to clarify various things.

Mar29

Don’t act so angry when I pass your tests.

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I had to deal with another professional trying to drag me to the hospital yesterday, insisting since I was weak enough to fall someone had to look at me. When I told him that my doctor had already looked at me, and that my doctor did not want me in the hospital, he wanted me right where I’m at (staying with a friend to make sure I don’t fall, and resting, which I can’t do in an emergency room), he was not at all pleased, and tried to convince me he was going to do it anyway unless I could sit up straight (which I couldn’t, but still insisted I wasn’t going).

I did not know this, but it’s illegal around here to force someone into medical treatment unless they can be proven disoriented. Which explains what happened next.

Normally, people describe me as oriented times three (to person, place, and time) even when I’m not, they don’t even bother doing the normal test of this. It’s the sort of thing most people just assume about you, unless they’re given serious reason not to. If they do ask, they generally ask you if you know who you are, where you are, what situation you’re in, and what day it is.

In this case, he didn’t just ask those things.

He wanted to know not only the date (something I normally have trouble with, but luckily knew yesterday), but the exact time of day, which is something most people don’t know without looking at a clock. Fortunately, my staff person had left shortly before that, so I said “after five”. He checked his watch (he didn’t even know the answer to the question!) and grudgingly admitted that it was just after five.

He went through a similar rigamarole when asking me where I was. He wasn’t satisfied with my description of where I was (a friend’s place, naming the friend) until I gave him the exact street address, something else that most people don’t memorize when they go to visit friends.

The thing about all this is, with orientation to time, they usually ask the year, the season, the month, and the day of the week, sometimes also the name of the president. I have been excused for not knowing the precise day of the week before if I was otherwise coherent, or for saying something like “I think it’s either Monday or Tuesday”. Knowing the time of day is above and beyond anything I’ve ever been asked, or heard other people asked in busy emergency rooms. Being expected to know the time of day when the examiner doesn’t know it is absurd.

With orientation to place, I’ve seen people passed or partially passed on these exams for simply knowing they were in a hospital, without knowing the specific name of it. (This would be like me saying “a house”.) I’ve never seen people asked anything beyond the specific name of the hospital. (This would be like me saying “Jim’s house”.) I’ve never, ever seen anyone asked a complete street address before.

And I’ve rarely seen a professional so angry as this guy was when I proved to be anything but disoriented.

Hint: If I’m able to coherently and rationally discuss, at fairly great length, while under pressure, despite total and obvious exhaustion, precisely what doctor I saw earlier today, his status among doctors around here, the problems I am having, the problems I am not having, and my doctor’s orders that I remain staying with this friend and not in the hospital where I would be put at risk of catching more diseases that could combine with this to make me really require hospitalization, then maybe I am alert and oriented enough to make my own medical decisions. If I have not injured myself, and am proven to be alert and oriented even beyond what is normally expected of a person, and have told you in detail about my visit to a doctor (since you seem to want me to undergo all the tests I’ve already undergone), you should be happy, not angry that you can’t force me to do what you want me to do.

I’ve already discussed it with my friend: Next time I fall, whatever people are around can make me as comfortable as possible on the floor and wait there until I’m strong enough to get up. I know I apparently look pretty awful, but I’m sick of people telling me to go to the hospital, especially after my doctor and I already came to the conclusion that this would be bad for my health unless I was actually seriously injured in a fall or any of the other usual things that would warrant this. Simply having trouble sitting or walking and “looking bad” isn’t enough.

Mar25

Breaking out of sheer monotony.

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For the next disability blog carnival, with a theme of “breaking out” (but not in rashes) (hosted by Andrea of Andrea’s Buzzing About, I was going to write something all about the fairy tales people tell themselves in their heads about disabled people. I was going to talk about the fact that when you’re not one fairy tale, they go “Oooh, so you’re this other fairy tale then.” And of course the consequences of not living up to other people’s fairy-tale versions of disability, or of being some weird hybrid of them that nobody expects.

However, I’ve been ill lately, and that’s made it difficult to write about that particular thing, but necessary to break out of something entirely different. A strange, monotonously repetitive mindset that seems to go along with some levels of pain and weakness.

It goes something like this (translated into words, of course):

  • Hmm, there is something I think I might want to be saying or doing right now.
  • That means I have to translate it into the right words or actions.
  • So here I go, translating.
  • I need to connect to my body more in order to do all this. Right now, my mind is sort of floating off and detaching to try to deal with this.
  • Okay, there’s the body, that’s what I’ve got to figure out before I can type or otherwise move.
  • YEEEEEEEEEEEOOOOOOWWWWWWWCH.
  • Okay, need to find a way to deal with the pain.
  • Brain is floating off and disconnecting again.
  • Thoughts are turning into all these little wispy fragments again.
  • Got to try to make at least some sense out of what’s going on, because it’s purely miserable otherwise.
  • Hmm, there’s something I might want to do or say…

Only, repeat it. And repeat it. And repeat it. And repeat it.

Until it turns into, not a bunch of separate things occurring in a particular order like I describe above, but a whole rhythm of experiences where different things sort of pulsate in and out of awareness in a regular pattern, and the whole thing is covered over, no matter which part is going on at that moment, by feeling really, really lousy and ill. And it gets mostly tedious and monotonous, of all things, because the rhythm sticks in my brain even if memory of what’s going on keeps sliding out of it.

And I’m not really talking about anything minor, either. Even before I realized anything was up, people were telling me I looked really crappy. At the worst of it, someone called 911, and the paramedics tried to test my level of alertness by pressing as hard as they could on a nerve that was near the surface and already irritated. I felt the pain, but failed the test completely because I couldn’t do anything other than stay limp. (Which might be good in a way, because normally if someone inflicted that much pain on me I’d fight back.) The whole lack of response == lack of awareness idea is one that really bugs me, although I know there’s some kind of protocol that requires the whole pain-infliction routine.

At any rate, even when things haven’t been that bad, things haven’t been the best circumstances for a long, eloquent post on disability stereotyping either.

So instead of the post I was after about breaking out of stereotypes, you get this one, where I get to attempt to break out of the rhythmic monotony of thoughts being thwarted by pain and exhaustion. Please try to avoid those pesky stereotypes while reading this, though; they get old.

There are a few reasons I made this post:

One is what I said, to break out of the monotony. Not that this is the only time I’ve done so (the repeating-thing seems to come and go), but it’s one time. And even lying around not doing much gets a bit old even when I am doing better than before.

Another is just in case it describes an experience that someone else might’ve had but had trouble describing. Because that’s something that’s often important to me. It took a lot of work to ask someone if this was common, and it turns out it’s a pretty common response to pain and illness in general if it’s bad enough. I’ve experienced it before, but of course at the time when I’m experiencing it, I don’t usually have the capacity to remember any other time, nor to imagine it stopping or anything changing in the future. It’s only in retrospect I can put it in any kind of perspective, because at the time my already-tenuous grasp on time is, to put it mildly, not there anymore.

And the third reason is that I can now at least post the thought that most commonly leaps to mind during the phase when there’s something I want to communicate that ends up getting cut off before I can say anything. It’s something that goes, as well, for every other time I either can’t think or move in standard enough ways to generate responses other people understand. It translates best as, “Please remember I’m a person.”

So maybe my inability to post what I was intending to, isn’t so bad after all.

Mar15

For Sharisa, and anyone else facing attempts at erasure.

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

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

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

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

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

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

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

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

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

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

Mar15

Read all about Joe’s Functioning Level

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I Am Joe’s Functioning Level is a great post over at Asperger Square 8, highlighting the fact that most of what gets seen as “functioning level” in autistic people is how much a person can pass for normal at any given time, in a superficial way, regardless of any other traits or difficulties they might have (which nobody would believe anyway, since they’ve already imagined up everything they think they know about the person’s life based on superficial appearances). Read through the comments, too.

Mar13

Colored letters revisited in other languages.

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Someone asked me what a bunch of letters, I think in the Russian alphabet, would look like to me synaesthetically. My answer was that at first they would look like the colors of the letters that most resembled them in English (although some of them, I noticed that even if the Russian letter was, say, similar to a standard English numeral, I often interpreted it as a rotated and/or flipped letter instead of a numeral. No idea why). And then, if I ever learned the actual pronunciations, it’s a good bet that they would, if analogous to pronunciation I knew in my usual alphabet, grow to resemble the colors of those letters, and even the ones that were not the usual, would gain pronunciations of their own.

And, I know I have a lot of people’s mail to answer, but I’ve been among other things pretty absorbed in documenting how I now see Arabic letters. I took Arabic for a year in college, and while I remember almost none of the words (I remember some long strings of words, but reciting the Quran is not exactly conversational), I retained the alphabet just fine. So this is a foreign language whose alphabet I’ve already learned, which has correlations to the colors of letters in English now, as well as some of its own colors for sounds that can’t be easily approximated by English sounds.

So I’m going to warn you that what’s up ahead in this post is very long, very graphic-intensive, and not necessarily all that blind-accessible (I try to do descriptions, but don’t always succeed well). Also, please note that I was wearing tinted glasses and using as dark a monitor setting as possible when I made my last letters, so I just remade them again and they’ll look a bit different than before. (I still have copies of the old ones but they look all wrong.)

I’m now going to try to post this and hope it came out right.

Edited to add: You can hear the sounds of the Arabic alphabet here:

(corrected because I’d accidentally posted one of them twice)

Or, if you like it musical, here:

Or, if you like it musical with cute little kids singing it:

Anyway, on to the synaesthetic stuff.

Read the rest of this entry →

Feb28

Some side-by-side analogies

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In the recent Wired article, Volkmar used an analogy that said that acknowledging autistic people’s right to remain autistic, or acknowledging our capabilities, went like this:

Yale’s Volkmar likens it to telling a physically disabled person: “You don’t need a wheelchair. Walk!”

The Autistic Bitch from Hell responded, partially, with:

He deliberately promoted a false stereotype that all autistics need extensive help from psychiatrists to do the simplest things in life, while conveniently ignoring the large number of autistic adults who already were (and, in some families, had been for generations) successfully integrated into society.

A more accurate wheelchair analogy might be to say that Volkmar and his accomplices grabbed people who were walking along the street, forced them into wheelchairs, tied their legs so that they couldn’t move, and then pointed to them and said, “Look at how much help these unfortunate people need because they can’t walk without their wheelchairs!”

And all of this reminded me of an analogy I made several years ago for how psychiatry treated me when I was essentially terrified, despairing about my future, and losing assorted skills day by day while wondering why on earth I couldn’t sustain my previous abilities in some areas. I had no model for existing as a person like who I was, so I variously tried to escape this reality by coming up with an imaginary world that was better than this one, trying to decide that dreams were being awake and being awake was just a really bad dream, trying to force myself to forget that reality existed, trying to turn myself by force of will into assorted kinds of non-autistic people, and eventually attempting suicide. I eventually also figured out that none of that is the best approach to the situation, but I gave it all a really good try before giving up on it as an effective coping mechanism. :-P

The analogy seems really apt when stuck next to Volkmar’s and the ABFH’s, so I’m not even going to add to it:

To use an analogy, it was as if I had wandered into the middle of the street, oblivious to any danger in standing there, obviously missing some combination of knowledge and ability to apply that knowledge, but essentially still me. Someone had run over me and broken my leg. Then, instead of helping me out of the street and fixing my leg, they ran over my other leg and broke that, and then both my arms. Seeing that this was not working, they kept running over my legs and arms and telling me that there was something wrong with me for not getting up and walking away. Then, they got out of the car and started beating me over the head and screaming that there was something wrong with me. This is an analogy, but I believe it is a good analogy to what the system does to people who are different, or simply in the wrong place at the wrong time.

It didn’t just happen to me; it was happening to everyone around me, too. […] The puzzling thing was that while there were indeed many sadists and power-trippers in the system, there were others who no doubt went along with this puzzling behavior because they felt pressured to do so, and others who had been taught that this somehow constituted “help.”

I think those analogies are all interesting to line up side by side, since they’re all using walking as an analogy for other things, but at the same time going very different places with the same ideas.

Feb26

Some quick corrections and clarifications.

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There is not a lot I needed to correct or clarify, but there is a little bit.

In the Wired article, I’m described as cueing up a video. It can be inferred that it is a video I made, but it’s not, it is a video made by ChristSchool, and it is this one:

Then there was a quote attributed to me at one point, that actually belongs to D.J. Savarese. I was telling the reporter a story about how when Savarese was interviewed on CNN, he was asked whether he thought autism ought to be treated, and he said, “Yes, treated with respect.” That quote is attributed to me in the article, when really I was telling a story about what someone else said, and did say clearly that it was D.J. Savarese who said it.

I am guessing that both of these things have to do with the fact that the reporter’s tape recorder broke and did not record the interview as planned, so he was going off of notes, which probably involved writing down the words but assuming the tape recorder would pick up the exact names of the sources or something.

Another thing slightly off is the amount of time it said I spent on the Internet. I was emailed and asked about that, and I said sometimes I spend a lot of time, and sometimes I spend very little to no time. I am guessing that the “scary amount of time” part fits in better with geek culture. ;-)

But I do spend a fair amount of time offline, in reality: I have obligations in the rest of the world too, given that I have a neighbor I go over and assist with a time-consuming medical device on a near-nightly basis, a volunteer job involving cats (who don’t have net access) that I sometimes do often and sometimes barely at all depending on what I’m capable of, a cat and dog living with me who want to spend time with me, and a fair degree of exhaustion just getting through everyday stuff (I can get online from bed, but don’t always do so).

None of this is to say I don’t like the article, I just don’t want people to mistakenly attribute other people’s quotations and work to me in the process.

Feb17

Hills and cliffs.

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I was just having a conversation about a difference I’ve observed between various autistic people. I want to note, before I describe it, that it’s not some kind of cut and dried division, nor is it scientific. It’s just an observation I’ve made. It’s not even a matter of “types of autism” necessarily, because a person can function in both ways at different times in their life, or bits of both at once. But I notice that some of my friends and family are primarily one way, and some are primarily another.

And be aware that when I’m talking about abilities, below, I’m talking about surface-level stuff. I’m not talking about the deeper neurological/cognitive sorts of abilities, which might be both stable and very much similar in all groups of people described, for all I know.

Basically…

Some people seem to have very stable abilities. If there’s things they can’t do, they just can’t do them. And if there’s things they can do, they always can do them.

Other people seem to experience a lot of change and fluctuation. They might be able to do something one moment and not the next, and they might always have various abilities moving out of the way to make room for whichever one is being used.

And I thought of an analogy to this, or rather elaborated on one of my old ones. Think of elevation as ability in any particular area.

Some people seem to have started off at a certain low elevation in this particular area. Then as they got older, they hiked up the slope. At the top of the slope was a nice, large flat area where they could find a place to live very easily on a long-term basis.

Other people seem to have started off at the same low elevation, but what’s in front of us look more like cliffs. We can get very adept at climbing those cliffs, but when we are, there is nothing else we could possibly be paying attention to, since too much is going to dealing with this cliff face. When we reach the same elevation as the other person, we are hanging onto a cliff face with our hands and feet. There is no possible way we could stay there. We might even be able to reach much higher elevations than the other person — the cliff seems to not have a top, from our perspective — but we will eventually have to either climb down voluntarily, or fall down involuntarily, back to our original level.

Some people might actually find a top to their cliff eventually, and thus be able to remain stably at that ability even if it took a lot more effort and falling down than someone else took to get to that point. Other people won’t find that, and will end up having to deal with cliff faces all the time.

And there is a definite difference, even in two people doing the exact same thing, between one person standing on flat ground at a certain elevation, and another person hanging off a cliff at the same elevation. They might be doing the same thing, and at the same elevation, but they’re getting at it in very different ways, and only one of them will be able to sustain what they are doing for very long. There are all kinds of things this analogy can’t get across — particularly the complexity of having skills shift around all over the place while you’re climbing those cliffs — but I hope that is one of them.

This difference between ways of doing things seems to exist within all so-called “levels of functioning” and other ways of trying to divide autism into little parts. Both sorts of people, and all combinations and variations of those ways that skills can work, seem to exist among people with all ability labels. I do suspect that some of what gets called ‘regression’ is actually just that someone was cliff-climbing and fell back down to the ground, rather than that the person was not autistic until they ‘regressed’.

I’d also like to note that at my own version of ‘ground level’ in many areas, there is a lot of stuff that’s invisible to people way high up in the air from my perspective (including me, on my climbs up here). Not all of it is bad stuff. There are abilities down here that don’t exist so much once you start climbing, and that I rely on as my more reliable abilities, that exist without too much effort or forcing. So climbing high in one area can mean leaving other things behind on the ground. And even people who climb cliffs to get to where most people start out, have actual abilities that do stay the same at some basic level on the ground. They’re just not usually considered to be that. (And people who mostly live up high but happen to walk by a cliff and fall onto lower ground, have a very different experience of this than those of us who live on lower ground but climb up onto the cliffs. Even if both sets of people look identical in some contexts.)

I hope I haven’t by now stretched this metaphor to its breaking point, but I figured it might be useful, and I’ve seen this difference create a lot of confusion between different autistic people before. (And I don’t think it’s limited to autistic people, I’m just talking about autistic people because that’s the conversation I was having that got me into this.)