Monthly Archives: March 2008

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


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.

Breaking out of sheer monotony.


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.
  • 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.

For Sharisa, and anyone else facing attempts at erasure.


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.

Read all about Joe’s Functioning Level


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.

Colored letters revisited in other languages.


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.

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