Monthly Archives: December 2007

Dec30

Necessities.

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Since I’m upright (for the moment), I want to talk about some necessities in the world.

In order to survive, people have to eat and drink. There is no way of getting around it. There has to be some way of getting nutrients and fluids. Yet people don’t generally consider food a horrible and shameful signifier of our bodies’ dependence on the world around us for survival. In just about every culture in the world, everyone who can manage even a little bit to do so will try to make their food taste good. There are entire cultural rituals around food. Food is not just about eating, it is often a social thing. It is also a integral part of many religious and ceremonial occasions. Those of us who eat through our mouths generally like our food to taste good, and there are thousands of recipes out there attesting to this.

People also have to sleep. Another biological necessity. And most people who can afford to do so find ways of making their beds comfortable and sometimes also pretty and good-smelling. People whose dreams consist of something other than constant nightmares tend to look forward to going to bed and sleeping after a long, hard day, because it feels good and they wake up rested and ready for another day. Even people who don’t have a comfortable place to sleep tend to look forward to the act of sleep itself. People talk about how much they look forward to bed, and also wish each other things like “sweet dreams”. People like to have good dreams when they sleep.

While individual people do not absolutely have to have sex (and not all individual people like to have sex), some members of the species do if we want people to keep being born. I don’t think I have to go into graphic detail to explain why most people consider this pleasant and a lot of people devote a lot of time to thinking about it. And people do and enjoy a whole lot of things that, while not being sex itself, still have to do with courtship and meeting (or being assigned) a romantic partner or future spouse. And this bond is usually considered a bond of love of one sort or another.

People in most places need some sort of protection from the elements. And in most places, people don’t stop at building or finding places to live in. If there is any way possible to do so, people tend to try to decorate their dwelling places and make them comfortable for themselves and their families or other people who live with them. And we also decorate our clothing and wear it in a variety of styles that reflect everything from what we think is pretty to assorted social and cultural markers.

If you’ve read this far you probably think I’m stating the obvious. (At least, I think I’m stating the obvious.) Which is that even when it comes to things that are universal or near-universal absolute physical necessities for the survival of human beings, we do not tend to believe that these things must be, because of this, somber, shameful, and impossible to enjoy, decorate, or embellish. (Yes, because I read up on the history of Quakerism before formal conversion, I know that we are one of the religions that has headed toward the extreme end of ascetic at times, and even condemned outward religious symbols that just about all of the rest of Christianity uses. I heard people joke at my meeting about how incredibly indulgent we were for having padding on our chairs. But while I’m definitely not a hedonist, I’m not an ascetic either.)

Anyway, there is a point in here. I’ve noticed that a lot of people, including people I know, have taken many of the statements I’ve made as meaning that ‘stimming’ (whether the word is being used to refer to unusual physical movements or to concentrating on unusual aspects of my environment) is sort of an idle pastime that I don’t have to do, I just like to do it, and that this is very different from situations where someone has to do them (at which point one can expect, apparently, the person to be very somber and/or frustrated about that fact).

I just want to make something clear here. Unusual mannerisms, paying attention to unusual things (or to the usual things in unusual ways), and all manner of other unusual things I do, are things I’ve had to do in one form or another my entire life. And a lot of people have tried very hard for the entire remembered part of my life to make me ashamed of these things, whether by calling me playground sorts of names, professional sorts of names, beating me up, commenting loudly on me in public even when I’m not hurting anyone, you get the picture. (Despite the things I am talking about being things that harm nobody, whereas many of the people I am talking about here have caused enormous degrees of harm to other people yet never been subject to any degree of shaming for it.) I have worked very hard not to feel awful about doing these things, particularly at times in my life when I haven’t been able to hide these things. I have also worked very hard not to do these things at all and only had it come back in my face ten times more forcefully. People should not have to feel what I felt or do what I did just because they also have to do these things.

Why do I need to do things this way? There’s a whole lot of answers to that.

Moving in certain ways often helps me understand what’s going on around me better than forcing myself to sit still does (and sitting still, even “unnaturally still”, when my body is not trying to move, can also be vital for this at times).

And moving in certain ways is just what my body does, and I imagine it has its reasons even if it’s not telling me.

Doing certain repetitive things helps me avoid doing much louder, more violent, and more conspicuous things in response to way the heck too much information at once. And actually staying somewhere when I want to stay there but doing these things, certainly beats running and hiding somewhere to do assorted repetitive things to calm myself down. Especially given that I often don’t have the capacity anymore to spend much time at all in certain settings without doing that stuff, whereas I used to get away with running and hiding more often.

Paying attention to unusual aspects of my environment is not only easier than forcing myself to pay attention to aspects of the environment that I’ve been trained by people with different neurologies than mine to believe are more important, and not only sometimes the only possible way to pay attention to anything, but it yields better and more accurate results for me, even if it doesn’t generally yield the results that people who’re into rapid identical plug-and-play responses are looking for.

And spending a good chunk of my time not straining myself into a foreign mindset is as necessary to me as sleep is to other people. And I need both that and sleep (which is one reason probably why I’ve often sacrificed sleep in order to have enough time where I could relax my brain). If it doesn’t happen, what will happen eventually is not only overload, but a very painful thing where a huge backlog of sensory information tries to flood my entire system at once. Unlike a lot of people, the standard mode of processing isn’t a relaxed and easy thing that automatically pre-filters all that stuff, it’s just something that shoves all that stuff aside and uses a clumsy imitation of standard ways of doing things, but all the stuff that’s shoved aside has to pop out somewhere and eventually it will.

At any rate, my take on all this is actually fairly simple: People do not generally question the necessity of food, water, sleep, sex, and protection from the elements. And people do generally enjoy those things quite a lot and even go out of their way to make them pleasant experiences. People even go to great lengths to make their eyeglasses pretty. In addition to the usual necessities, I also experience all the things I have described above as necessities, some of them even more urgent necessities now (with more input and responsibilities to sift through) than they used to be, and some of them completely unavoidable no matter what I do. I also see them as having the potential to be some combination of pleasant, enjoyable, useful, and beautiful, and have worked hard to see them this way despite many people telling me in one way or another that I am bad and shameful for having to do these things. I see no contradiction here, and I refuse to be all somber and distressed about doing these things just to make it clear that they’re more than pointless frivolities.

Dec29

Holiday “joy”, and assorted communication stuff.

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I am starting to wonder whether disabled people who happen to depend on paid staff for everyday tasks have a very different conception of assorted (secular and religious) holidays than other people do.

I’ve had a relatively new staff person and a completely new staff person this week, which has meant not only a lot of important things not getting done, but also a lot of things that are important for them not to happen keep happening. Meanwhile, my friend has had no staff at all some days and completely new ones for very short periods of time other days.

Which is probably why I’ve ended up mildly dehydrated and both of us have ended up pretty exhausted.

Meanwhile, of course, there’s other things going on. My dog has a UTI. I went to the pain clinic only to get poked and prodded around the neck area and made to turn my head in such a way that, whatever combined effects those had, I ended up vomiting, a lot, a few minutes later, and being queasy the rest of the day. My communication device’s USB port finally completely broke, and the loaner the company had been claiming to be about to send me since sometime in November still hasn’t arrived, nor do any staff people know about that since none of the ones who were here this week were around in November.

But there’s sort of a point to this besides whining. Seriously. ;-)

I’m not sure that a lot of people fully get the point that despite a working communication system, it doesn’t mean I’m going to be able to tell everyone what’s wrong at the moment they need to know it. I might not even be able to make it over to the $30ish computer I got for everyone to leave notes and scheduling information for each other on.

There are projects that have been supposed to happen starting since the day I got services here. They haven’t happened. I don’t know why. I do know that repeating myself about them occasionally doesn’t seem to do much. I’m told people are “working on” them. I haven’t seen the finished product.

I’m supposed to get a handicapped parking placard. Been supposed to for years. Even that, which is simple as projects go, hasn’t happened. Despite the fact that everyone on my support team has strong incentive for it to happen, especially in the winter with the chair and so forth.

I guess I’m not a very good nag. Especially when I find myself only able to communicate things to the people around me that don’t necessarily have to do with everything I need to communicate. There’s this weird assumption going around that if someone really needs to say something, it’ll get said, if they have the means to say it.

I don’t work that way. I have a long medical history, noted in my records (often by the staff who’ve had to deal with the firsthand results), the worst parts of which often result from me not working that way. Which reminds me, several medical professionals in about three different disciplines have been telling me I ought to consult with a surgeon soon. (I have this weird image of pulmonologists sitting around telling gastroenterologists something like, “Do something to keep ‘your’ fluids out of ‘my’ lungs.” I know it doesn’t work that way, but for whatever reason I find it sort of amusing to see people in various specialties as owning assorted sorts of body parts.) But I think everyone thinks it’s someone else who’s going to write the referral, and I haven’t been asking (in part because too much else has been going wrong and for a fairly large part of this month I wasn’t even usually awake). And then when I do talk to that doctor, all possibilities (whether having surgery or not having surgery) are somewhat scary and I’ll have to actually make decisions.

But it’s not even just medical stuff, it’s everyday stuff. I just don’t say it. Can’t always say it. And there’s so much of it. Sometimes the sheer amount of stuff I’ve got to say is the reason I can’t say it. Sometimes it’s the fact that if I told one part of it they’d do the wrong thing and I don’t have the energy to tell them how to do it right. There’s just a lot of stuff not getting done and very little of it that I can communicate about. It’s not that I’m not trying, either. It’s just there’s so much of it. I remember a staff person who got to know me really, really well, who just assumed that (where I lived before) when she left the house I got up and did a lot of stuff. She had no idea that I sat around in one place most of the time, and that this was the reason she would leave when I was in that spot and come back to find me in that spot, despite me having a need and desire to get up for a wide variety of reasons. (She did find out when I turned up with dehydration eventually and she asked a few questions that elicited the answer.)

Ideally eventually everyone will know it or a large portion of it. It’s just amazing to me how haphazard this process is. It turns out I’m some sort of strange beast the agencies haven’t encountered much: I am my own guardian, I communicate for myself, I receive their services, I’m classified by their testing system as severely disabled, and I have no clue how to tell them all this stuff that they normally hear either from their clients or their guardians. Usually, at least ideally, there’s supposed to be some other person pointing out what’s needed, but there’s nobody like that for me. My parents are across the country. I’ve got one friend here who has enough trouble directing her own services. I end up reading assorted manuals designed for everything from physically disabled people hiring their own support staff to parents of disabled adults trying to set up assorted support programs, trying to find something that would contain the lists of stuff that needs to get done around here. Sometimes I find stuff and sometimes I don’t, but nothing fully covers it. So in the meanwhile I just keep getting told how strange I am (first words out of one case manager’s mouth was “Our team (the one for people without roommates) doesn’t deal with people with this many needs this often”, and I spent the rest of the time he was my case manager trying to keep him from forcing a roommate or worse on me.)

Somehow there has to be something that can provoke the list of answers that would allow me to say what needs to get done around here (beyond the checklist assorted staff have already developed on their own). But so far I have not found it. And none of this situation seems fair to either me or to people who have to work for me (but who aren’t told much if anything, and of course with funding this low are not allowed to “shadow” other staff for very long before starting). There also needs to be some central point for information, and so far that’s only partway accomplished (and large, large pieces of it have not even been started, nor am I sure they ever will be unless something changes).

Dec19

Naivete

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I was talking to a friend the other day on the phone. And somehow we got into talking about some of my weak points, including what must look like astounding levels of naivete about some things. I remember a staff person I used to know (actually one of the best who ever worked for me) where I wondered whether she was neurologically atypical in some way, because she had a lot of really crappy life experiences at the hands of others, yet still seemed overly trusting of other people in ways that were always getting her in trouble.

I tend to assume in some way that other people have good intentions, and that conversations are happening in good faith, rather than some other kind of motive being involved.

More specifically, I tend to assume that people are interested in exchanging information, and are interested in figuring out what is real and what is right or wrong ethically, beyond whether their pre-existing viewpoints happen to be right or wrong about it.

I tend to especially expect this of adults, possibly because my commitment to that sort of thing became conscious and strengthened when I moved out on my own as a young adult. (This sort of thing is nearly always a gradual process, but there’s a difference between being committed to it even if you screw up, and not caring at all.)

All of which is a somewhat ironic example, of course, of an area in which I’m not always taking in the real world as opposed to what I expect of it. I often even get the gut reaction (and from what I’ve been told, I’ve got a highly accurate gut) that someone is not trustworthy, and yet still continue to treat them as if they are, while trying to remain internally wary. I can’t tell at all if this is a sign of ethics or a sign of extreme foolishness and stupidity.

Anyway, I mentioned all this to my friend, and she told me that she’s noticed this about me for awhile, in a way that sounded like “That’s really obvious.” I just wonder what to do about it.

Dec16

Please violate only one stereotype at a time.

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What seems like a really long time ago, elmindreda wrote about The difference slot. The idea being that:

The basic idea is that each and every person has their difference, and that it should be respected. Note the singular form, however. When they learn of my autism, which is usually the first major difference to come up in conversation, they seem to think “oh, so that’s her difference”. They then proceed to fill in my difference slot in their mental table, and everything is as it should be.

Or, so they think.

Then, a little while later, I happen to mention some other thing that makes me very different from most other people, and their belief system collides head-on with reality. Usually, it’s another one of my disabilities that triggers it. This is when they almost invariably go “…” for a while, only to finish with “you have that too?” In other words, “your difference slot is already filled, and you can’t have another one”.

What I’m writing about is similar, but perhaps from a different angle. A phenomenon I’ve seen over and over again runs something more like, “Please violate only one stereotype at a time.”

This can apply even if you only have one “difference” (be that autism, physical disability, whatever).

If you have several differences, of course, the problem becomes exponentially harder to deal with.

And there are a number of different ways to deal with the prejudice you encounter where people might be able to handle you violating one stereotype, but leap all over you if you happen to violate more than one.

Some (false) stereotypes I happen to violate, just by way of example:

  • People who use mobility aids such as wheelchairs, canes, crutches, walkers, etc. must use them full-time.
  • Autistic people who are non-speaking or nearly so, must always have had no speech.
  • Autistic people who are non-speaking or nearly so, must be non-speaking entirely because of autism, not because of something else.
  • Autistic people can never pass to be normal or ‘just eccentric’.
  • Autistic people can only pass for normal or ‘just eccentric’, never for anything else.
  • Autistic people who pass can never stop passing, or if they do it’s always by choice.
  • Autistic people are only allowed to lose certain skills within a short window in the first few years of life.
  • Autistic people only lose certain skills right after a vaccination.
  • Autistic people, when they lose skills, only lose skills because they are autistic, never because of anything else.
  • Autistic people, when they lose skills, never gain skills at the exact same time.
  • When autistic people lose skills, it’s always immediately obvious to everyone around them that this is what’s going on.
  • The time an autistic person is diagnosed reflects the time that they became (or appeared) autistic, rather than the time anyone else noticed.
  • Everything unusual that an autistic person does is because they’re autistic, they never have additional conditions (i.e. the “difference slot“).
  • Autistic people are completely unaware of other people and their surroundings.
  • Autistic people can’t communicate at all.
  • Autistic people live in their own little world.
  • Autistic people have one pattern of mannerisms all the time and never vary them and never lack those mannerisms altogether.
  • Autistic people are incapable of love.
  • Autistic people can only be interested in one thing.
  • Autistic people who have an interest in people always look (to people who think that standard gestures of interest are the only way of showing interest) like they have an interest in people.
  • Autistic people can either speak to communicate or not speak to communicate, never alternating between both, and certainly never some odd in-between state.
  • Autistic people who chatter on and on about their interests are a ‘kind’ of autistic person, and that ‘kind’ of autistic person never has trouble communicating in speech and/or language.
  • When an autistic person needs everything the same, you can really tell.
  • Autistic people who have meltdowns do it for no good reason.
  • Autistic shutdowns always take the form of falling asleep.
  • Autistic people are never classified as gifted.
  • People classified as gifted never lose that classification as they get older.
  • When autistic people violate stereotypes (such as, in my case, doing things like failing to hide my facial hair), it’s because they don’t know any better, never because they have made a reasoned choice to do this.
  • Autistic people who do advocacy work don’t really care about other autistic people, they just want to make trouble and/or go on an ego trip.
  • Autistic people who do advocacy work or other work that pertains to autism can really only speak from their own experience, they never have expertise from other sources than their own experience.
  • People who can’t take care of themselves, can’t take care of anyone else either.
  • People with movement disorders always have the exact same degree of difficulty with movement in all situations.
  • People with movement disorders have the same degree of difficulty with all forms of movement.
  • Disabled people have no sexuality.
  • Disabled people never have more than one thing going on at once (that difference slot again).
  • Women who are romantically interested in women have never dated men.
  • Autistic people have never dated anybody.
  • There is no difference between the act of producing speech or typing, and the act of using speech or typing for communicative purposes.
  • There is no difference between the act of producing speech or typing that sounds right (or approximately right) for the situation, and producing speech or typing that actually communicates what the person is thinking (unless the person is being deliberately misleading).
  • Disabled people always have the exact same type and degree of difficulty with something, it never changes or fluctuates or anything.
  • Lesbians can’t also be Christians.
  • Two people with the same disability label are going to have the exact same difficulties with everything, or else one or the other of them should not have this label.
  • Whatever the majority of the current society a person is in considers “a disability”, is the same thing every society a person could be in considers “a disability”, there is no such thing as a set of strengths and difficulties that in one place and time is considered within the realm of normal and in another place and time isn’t.
  • Because of the last stereotype, if a person is not noticed as “disabled” by the society they live in at one time, then they must not have had the same condition that another society (or even another part of society) considers “disabling”.

That’s a whole lot of stereotypes, and that’s just off the top of my head. I’d venture a guess that most people violate at least some stereotypes of some kind. But some stereotypes have more consequences to violate than others.

And what I’ve found, is that people prefer people to violate as few stereotypes as possible at once. If you can violate no stereotypes or only one stereotype, that is great, that is expected and mostly acceptable. The more stereotypes you violate, the more trouble you get in.

And there are a number of ways to react to this, as a person who violates many stereotypes. I’ll just list some of them, not an exhaustive list either.

  1. You can take the attitude of basically, “Yeah I violate a lot of stereotypes, screw ’em if they can’t handle it.”
  2. You can be open about violating stereotypes, but ashamed at the same time.
  3. You can be open about violating stereotypes, but claim that everyone else fits the stereotype.
  4. You can be open about violating stereotypes, but claim that none of the stereotypes ever apply to anyone.
  5. You can actively try to hide some or all of the stereotypes that you violate.
  6. You can just fail to mention some or all of the stereotypes that you violate. (I’m talking about on purpose here. I’ve certainly failed to mention some that I violate by accident, only to find that people really thought I was doing it to hide the fact that I violated them, when that was the furthest thing from my mind.)
  7. You can try to hide some or all of the stereotypes that you violate, while at the same time condemning people who violate the exact same stereotypes openly.
  8. And you can even take a step beyond that. You can go to people that you know cause trouble for people who violate those stereotypes. And you can, while hiding a lot of the stereotypes that you do violate, say, “Hey, look at me. I’m okay. I don’t violate all those stereotypes. All those people who violate those stereotypes are really bad people. I’m not a bad person though, and I’ll say whatever you want me to say, including condemning people just like me, as long as you accept me.”

Like most people who violate these stereotypes, I’ve done most of them before. And I’d never entirely condemn anyone for doing any of the ones that involve hiding, even the last one I mentioned, because sometimes it’s what people need to do to survive in any number of ways.

But obviously, some of them can be hurtful, either to the person doing them or to a lot of other people, and this can be both directly and indirectly, and intentional or unintentional.

Doing the ones that involve just hiding those traits in some way, while in some ways innocuous, do make it somewhat harder for people who do violate them to be open about them. It’s easier to be open about something like that when you know that other people are as well. (And yep, autistic people can find things easier just because other people do them, we’re not immune to that whole thing.)

Doing the ones that involve actively condemning other people who violate stereotypes, and the ones that involve actually aiding people with more power who condemn (or do worse things to) other people who violate stereotypes, can not only really twist up the conscience of the person who is doing them, but actively do harm to people who violate the stereotypes. In these cases you’re basically actively adding to the prejudice that already exists against people who violate the stereotypes, and in the last case you’re aiding people who have the power to act on that prejudice in ways that can shut people out of powerful positions, shut people out of receiving services, or other things like that.

And there can also be a kind of harm in saying that nobody fits a stereotype. A person saying that should take great care to see whether it’s actually true. Otherwise, you can end up inadvertently creating an opposite stereotype. And if you say that you don’t fit the stereotype but everyone else does, you’re obviously reinforcing the stereotype.

But, in the end, I have to say that the idea that people must violate only one stereotype at a time is just as nonsensical as the difference slot. (And I’m still not feeling great, although I’m feeling way better than I was, so I’ll end here and hope that any dots I have not connected in my writing above, can be connected in the heads of people who read this.)

Dec14

When doctors ignore pain, and new agers worse than ignore it.

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I have frequently been, the past few months, in a state of strong but controlled rage. What anyone reading this has to understand is that the rage is not only for my own situation, but at how large the situation, and similar and worse situations, are, for a whole lot of people in the world. If it were only my own situation… well then I might not need to write about it so much, and I wouldn’t be this mad about it.

At some point I started realizing the back pain I was experiencing lately was familiar. The part that made it somewhat obvious was the kind that starts at one spot in my spine and radiates either upwards or downwards. I remembered that. What made it even more obvious was when the pain was terrible, and I was twisting around into all kinds of positions on the floor trying to find one that took the pressure off the parts that hurt the worst. Then I remembered what it’d been like in my late teens. And I remembered what was done about it.

I’d been able, somehow, to say something that got people’s attention about the pain that I was feeling. It was intense. Almost as intense as it’s been lately. I was having not only back pain but periodic migraines and the pain that is now being called some form of trigeminal neuralgia. I was only able to articulate a lot of it in vague ways, if at all, but I did articulate it.

At one point I was sent to my general practitioner about this. He told me to bend over. He told me that since I was obviously quite flexible, there was no physical problem in my back, and therefore nothing to worry about. (Even though I have a family history on my mother’s side of spines so flexible that they induce pain and other problems.)

Then someone suggested that I check into some alternative concept about this pain. It had to do with energy. There was supposedly a snake curled up at the bottom of my spine. My problem, of course, was that the snake was jumping up my spine, creating all this pain. When it thrashed around in my spine, that created the different positions I twisted myself into. When it thrashed around in my head, those were the migraines. This was an acceptable thing to believe in California. They had therapists for it.

I went to see a therapist for it. She showed me diagrams of the different areas down my spine and what they all supposedly meant. She told me that the snake awakening in me had something to do with spirituality. At one point she told me that autism was just being born with the snake awakened. And the different parts that hurt had to do with spiritual progress or spiritual blockages.

Nobody offered me physical therapy. Nobody offered me pain management. Nobody offered to try to find the source of the problem. All I got was the woman my father dubbed the “snake lady”, whose main advice was that I ought to stop praying and join a cult because there was no way I’d survive — literally, she said I’d die otherwise — without a guru with a long Indian-sounding name and a big following of well-off white new-agers.

Meanwhile, I had been trying to function.

I had had to drop a class in college because I got terrible headaches. (Headaches, I was later told, were a sign of higher spiritual advancement, and I just needed to get the snake to jump out the top of my head in order to get release from this pain, the problem was I just had these blocks that wouldn’t let me.)

I tried to go to university when I was in so much pain that I spent a lot of my time writhing into different positions on the floor, crying, moaning, or screaming. I didn’t know it wasn’t only being autistic, but also the pain I was in, that was keeping me from functioning there. I didn’t even know fully how much pain I was in, or that I was in pain so severe that most people would stay in bed, call their doctor, and not even attempt anything close to what I was attempting.

I didn’t even make it to class most days. I thought I was dumb, weak-willed, and crazy. I felt the pain, it wasn’t that I couldn’t feel it, but I couldn’t connect the feeling to the severity of what I was experiencing, or the limitations in what I could do. I kept straining to do more and more and being able to do less and less. And when the snake lady and similar previous people got hold of me, I began to see myself as lacking in all kinds of spiritual qualities, and began praying desperately for help and guidance (which I did receive eventually, and said guidance told me to get the heck away from all this snake crap) and viewing myself in general as having some horrible deficiency related to the symbolism the assorted snake-obsessed people taught me about whatever area I had pain in.

People around me didn’t see me as in pain, either. Because I was autistic and had spent my adolescence in both inpatient and outpatient versions of the psych system, I was simply proving that crazy autistic people who go off their meds don’t belong in universities. They were perceiving me through a specific lens, and therefore unable to perceive what was really happening, even though it was right in front of them, and if I had been ‘normal’ it would’ve been clear as day to them why I behaved just like someone in severe pain, and why a person in untreated severe pain might not be able to function in a university environment.

I left university and found the snake lady.

And eventually I left the snake lady too. (As I got into the car with my mother after announcing my intentions to do so, she screamed at me and my mother all about how I was making a mistake.)

There was someone else who was heavily active in the same circles as the snake lady. The snake lady looked down on her because of the fact that the disease she had did not go away. The snake lady seemed to see that as a sign of lack of spiritual progress. This person died of the disease she had, still convinced it was a spiritual problem.

It took the pain I’ve experienced the last several months to remind me what it was like back then. I’m now in complete awe of the amount of things I tried to take on in a state so reminiscent of what I’ve been feeling like lately. And I’m also enraged. Not in a way that consumes my life or anything. But a quiet rage that shows up whenever I think about this whole thing. And I don’t think it’s at all misdirected

It’s directed at all physicians who treat some people as if we’re not the same as their ‘normal’ patients, and as if our expressions of pain don’t exist or don’t mean anything.

It’s directed at all physicians who simply refuse to treat severe pain, or to try to find out why it exists.

It’s directed at at the parts of the new age movement that step in where the physicians have failed to, and encourage people to view people with chronic pain, including that which comes from life-threatening diseases, as experiencing a spiritual block of some kind, and thus being either higher or lower spiritually, but definitely not in need of something like, say, pain management or treatment of the actual problem or anything like that. Don’t get me wrong, I’m all in favor of genuine spirituality, and even don’t mind the possibility of genuinely considering where our bodies fit into our religious beliefs, but this is not it.

For me, in this particular case, it was eight years of missing out on possible treatments for severe pain while wondering at times why I couldn’t function. For other people, it can be longer. And for still other people, a disease can take their lives while doctors are standing around doing nothing and the new-age movement is stepping in to tell them their pain either means they’re on their way to enlightenment or they’ve sinned in some way to cause it. There is nothing good about this situation, but maybe writing about it will be one step towards changing it. And doctors, take note, when you refuse to treat this sort of thing, the people who eagerly step in to take your place have an even worse effect on your patients than nothing at all.

Edited to add: Another thing doctors should take note of, is that sometimes the new agers (or whoever else teaches these strange things) have gotten to your patients first, or sometimes your patients have extremely different interpretations of the sensations in their body than you do. I wish I could remember the web page I once saw where a doctor had written down some stories he’d told his medical students.

One of them was about a man who came into an emergency room screaming that the devil was squeezing his heart. At first, the people who worked there didn’t take him seriously, figuring he was “just schizophrenic” (which was, in fact, a diagnosis he’d received at some point), and that therefore any odd perception he possibly had must be a hallucination or delusion and have no grounding in reality at all. They were proven wrong about those assumptions when the man had a heart attack.

The moral of that story is, just because someone tells you that the devil’s squeezing their heart doesn’t mean nothing’s wrong with their heart, and just because someone tells you there’s a snake jumping up and down their spine wreaking havoc doesn’t mean they don’t have some kind of genuine back or neck problems, migraines, MS, referred pain from any of a number of internal organs (I’ve felt pain in the middle of my back from gallbladder disease and reflux personally, and at the time I saw the snake lady I had untreated nerve pain that amplified any pain of that nature to cover a larger area than it did after treatment), or other things that might cause that kind of pain. Whether their perceptions are distorted to begin with, or whether they’ve been taught to view things in a way that seems distorted to you, or whether they just happen to have a very colorful way of saying things, it doesn’t mean there’s nothing behind what they are telling you.

Dec9

Personalish update stuff

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I’m feeling a fair bit better. The combination of Lyrica and Trileptal is doing something strange, which is that even though they’re causing the usual drowsiness, exhaustion, and double vision, they’re also making me think and translate to words clearer. Also meaning that even if I fall asleep in the middle of a sentence, I’m still more likely to write what I was meaning to write. And that thoughts stay put more often and don’t need to be forcibly shoved into place. And the seizures I was having from the pain meds have vanished, and some of the pain is also lessened. I also don’t get a weird feeling whenever I step under fluorescent lights, although I still don’t like them.

My mother is here:

My mom, my dog, and me sitting on the couch

She’s going to stay here until I get a little bit more adjusted to the meds, since right now I’m falling asleep all the time and falling over when I try to walk and so forth. (But I’d still rather stay the way I am now and just adjust to it, than be without the side-effects but also with all the pain and thinking restored to how it was before. One of those weird tradeoffs.)

I’ve got a lot of ideas for posts, I’m just waiting to have the energy to post them. I’m for once fairly confident I’ll be able to write them once I do have the energy, though.

Dec5

Identical behavior, contrasting responses

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This post has been forming itself in my head ever since I went to both a DD self-advocacy conference and MIT within the same week last May. I’ve just for whatever reason not had the chance to actually write it.

I really enjoyed spending time at MIT. People there accepted me more or less as I was, and accepted a lot of other disabled people as well. In fact, their entire Human 2.0 symposium, that happened while I was there, dealt with the fact that disabled people get a lot of technology before other people do, and was about how technology that could enhance everyone’s lives was being developed specifically for disabled people all the time.

At some point there, I had a bad migraine and needed to lie down. They allowed me to lie down backstage under a table. I expressed fear over this. They were shocked and said that people lie down on the floor all the time at the Media Lab, that it was just part of how the place worked, and that they couldn’t imagine why I was afraid to lie down in public. I didn’t know where to begin with the sort of cascade of connections that went through my head more than ever at that point, but a steady stream of which had been falling through my head the entire time I was there.

In May, I went from a self-advocacy conference for people with developmental disabilities, to MIT. This involved an extreme contrast in what the lives of many of the people there were like, in terms of what sort of person they were classified as by society in general. In other ways, there was no contrast at all.

When I was younger, I went from assorted programs for students classified by the educational system as “gifted”, to assorted programs for people that the educational and medical systems had written off with a whole variety of labels. There was a great contrast between the way people were treated. There was, yet again, less innate contrast between the people involved than most people imagine.

If I were to describe being places where people routinely ate non-food items; had a variety of unusual tics; appeared to believe things that most people would call delusional; found it impossible to learn in regular classrooms; looked at first glance (and had been thought to be by others) what most people call “crazy” or “retarded”; were frequently under the care of neurologists, psychiatrists, and other such professionals; had unusual mannerisms and postures and behavior that in most places would be considered bizarre; and frequently had pretty extreme delays in areas like self-care; which one of these places do you think I’d be talking about?

If you thought special ed… the answer is yes.

If you thought mental institutions… the answer is yes.

If you thought gifted programs… the answer is yes.

I made the transition between these situations more abruptly than most, so I was able to see the similarities and the contrasts very starkly. Most people who have been in only one or the other situation, or whose transition between one and the other situation is gradual, or whose perceptions of other human beings come pre-filtered and pre-packaged to the extent that they see great differences merely based on what classifications the people belonged to… these people would not necessarily observe these things. I did observe them.

Lying on the floor is one of the things that starkly cuts through all of these situations in my memory.

I remember me, and a lot of other people, lying on the floor at places like nerd camp and other gifted programs. We were seldom, if ever, chastised for it.

I remember a tall boy in a mental institution who tried to lie on the floor in the hallway. I remember staff converging on him and saying they would have to do something about it. He wasn’t hurting anyone. He wasn’t even blocking anyone’s entrance to anywhere. Another inmate tried to say so. The staff told her that he needed to learn to do as he was told and needed to learn to look appropriate. They called for reinforcements, since he was a really big guy, and then grabbed him and carried him off to the isolation room while he fought them. His fighting them was seen as a symptom of a violent nature, rather than the natural reaction of someone who has been grabbed by several people to be carried off to a small, locked room, for doing something he considered totally normal.

People don’t always realize this simple fact: Lots of people do the same things for the same reasons, regardless of how they have been classified by the medical profession. Once the people doing these things are in an environment where their every move is watched and pathologized, they can get in trouble for it, or get put on an extensive behavior program for it. My ex-boyfriend ate paper and most people saw it as an eccentricity, because he was labeled gifted. There were a lot of people who ate paper in other settings, probably for the same reasons my ex did, whatever those reasons were (I never asked). People put them on behavior programs for it, because they were considered to be doing it “because they didn’t know any better” (and whatever anyone said in public, it was obvious they thought of a lot of us as “crazy” or “stupid” or both, and thought those to be the reasons we did anything they didn’t like).

I used to be unafraid of doing things like lying on the floor, even sleeping on the floor. Psychiatry made me afraid and called that an improvement. I walked into MIT afraid, and they were astounded at my fear, and disgusted at the sources of it.

I went through gifted programs terrified of when someone would discover that I understood less than they thought I did (in sociological terms I was aware, as few others were, that I was discreditable, but only partially discredited). But because of the privileged life I’d led in terms of that classification, while I legitimately feared being put in mental institutions and labeled, I never dreamed that I would become afraid of as innocuous actions as lying on the floor, running around squealing in happiness, or a number of actions that were deemed totally normal in the environments I lived in. But I did become afraid of those things.

For three days, twenty-nine staff members at Elgin State Hospital in Illinois were confined to a ward of their own, a mental ward in which they performed the role of “patient.” Twenty-two regular staff played their usual roles while trained observers and video gameras recorded what transpired. “It was really fantastic the things that happened in there,” reported research director Norma Jean Orlando. In a short time the mock patients began acting in ways that were indistinguishable from those of real patients: six tried to escape, two withdrew into themselves, two wept uncontrollably, one came close to having a nervous breakdown. Most experienced a general increase in tension, anxiety, frustration, and despair. The vast majority of staff-patients (more than 75 percent) reported feeling each of the following: “incarcerated,” without an identity, as if their feelings were not important, as if nobody were listening to them, not being treated as a person, nobody caring about them, forgetting it was an experiment, and really feeling like a patient. One staff-member-turned-patient who suffered during his weekend ordeal gained enough insight to declare: “I used to look at the patients as if they were a bunch of animals; I never knew what they were going through before.”

from The Lucifer Effect by Philip Zimbardo

And that’s what happens during what people know as an experiment. Imagine being put in such a situation because something about you was deemed pathological, by people who viewed you as such.

I enjoyed my week at MIT. But every moment I was there, I was conscious of what an autism “expert” had told me, which was that I didn’t belong at a university at all (if I ever get an MIT business card, she will receive one in the mail). I was conscious of being a privileged member of what was otherwise considered an outsider-caste to that whole system, conscious of this in a way that even with my fears I had not been conscious of prior to experiencing being shoved into the typical environments of that caste once others discovered my place in it. I was conscious of a society that tolerates and even celebrates certain behavior among those it considers highly intelligent, while condemning others to torture for the exact same behavior because they are considered either not intelligent enough, or too crazy, or otherwise deviant, or some combination of the above.

And I came home to my own apartment, where last week a staff person felt he had the right and even the obligation to report to my case manager that I was grumpy in the morning before breakfast (edited to add: in fact, he never made me breakfast, or lunch either). How many of you out there who share this morning grumpiness trait with me have it reported to a case manager and put in logs that would normally go into your permanent record, and even treated as signs of your overall personality?

(I should note that even many of those considered “highly intelligent” do, have, various, labels, and things like racism and classism can greatly influence what label a person gets. If I were anything other than white or middle-class, I might have had very different sets of labels much earlier.)

It’s because of experiencing the extremes of this so rapidly and close to each other, sometimes in such combination with each other (because my life can’t just be sliced up into two categories without any complexity to them), that simply having my normal behavior accepted at MIT for a week isn’t good enough for me. I won’t be satisfied in this regard until everyone else with a psychiatric or developmental label (or who would get such a label in certain situations) can enjoy the same freedom to be themselves in completely harmless ways, and the same level of inclusion in society and decision-making that affects us, that those of us considered “highly intelligent” often enjoy, and until nobody gets written notes in their official record for being a grumbly grouch before their morning breakfast or coffee.

Dec1

Michelle Dawson in the news

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Here is a link to the news story. It seems to better represent her point of view than a lot of things do, but she said the personal experience stuff made her cringe.

Which makes sense. She is a researcher. Her knowledge comes among other things from an encyclopedic knowledge of articles regarding autism. She does not do research entirely from her own personal experiences, she does research based on the rest of the science out there.

Similarly, when autistic people try to advocate politically, it’s very common for people to ask or even demand that we stick to telling our own stories. The idea is that, even if a person has known a whole lot of autistic people, even if a person has studied disability politically and been active in any of a number of disability rights movements, all they’re talking about is still their own experience, we’re simply not allowed to talk about things beyond ourselves, and even when people do print our actual ideas rather than just our own personal stories, they often seem more interested in our personal stories than anything else.

Meanwhile, somehow parents and professionals are not held to this standard so much. They aren’t as often told, “But you are a parent to only one autistic child, so don’t give your views on autism in general, because you’d just be generalizing from your own personal experiences. Stick to telling your personal stories and avoid voicing opinions.” Yet that is exactly what autistic people are always told. It’s an interesting double-standard, there.

(See also Joel’s blog entry, You can be an autistic or a professional, not both! And note that I’m not saying it’s wrong to talk about our personal experiences — otherwise I wouldn’t do it all the time — but it becomes a problem when it’s not only all we’re expected to do, but in some people’s eyes, all we should be allowed to do.)

And, because I don’t know where else to stick this, a bit of a personal update: I’m already feeling a bit better. I don’t know how much of that is:

1. Because, thanks to my mother coming out tomorrow, I won’t have to worry so much about who can provide more assistance than I usually need, and don’t have to think so much in general. (Thinking can aggravate pain if the pain is bad enough and the thinking is hard enough.)

2. Because I’ve been switched from Neurontin to a combination of Lyrica and Trileptal.

3. Because elements of the nerve treatments I received yesterday are already working.

4. Because now that the treatment is over, I am allowed to resume the other two pain meds I was taking before.

But basically, the pain is still there, and still in the severe range, but not so much in the hellishly severe range. Which I’m taking as promising. My head is also a bit fuzzy, but I’m imagining that is from switching from 2400 mg of Neurontin a day, to the equivalent of 3600 mg of Neurontin a day (actually it’s 600 mg of Lyrica a day, which is I guess 6 times as potent as Neurontin), and adding Trileptal into the mix. (I hope Trileptal has eliminated the weird side-effect that its close relative Tegretol has, which is messing up a person’s sense of pitch. I don’t need the entire world to sound off-key. But the idea of, if I tolerate it, actually being on a combination of seizure drugs instead of one drug that’s supposed to be used only as adjunct therapy with another one, sounds promising in areas beyond pain control, and even might help with pain control indirectly since some of the meds I’m on lower the seizure threshold.)