The Particles of Oppression

This post is in response to this post by ballastexistenz.

I don't remember the specific moment when I realized the pattern of what was going on. It's mostly consisting of a lot of little realizations, which have been incrementally coalescing into a broader understanding of discrimination, how it applies to me and to others.

One thing I remember real clearly, though, was when I was in grade 7, unsuccessfully pleading to the counselor to let me write an incident report or to discipline the bullies for yet another assault, after all this time of it being blamed on my "odd" appearance, resulting from everything from autism to seizures to lacking designer jeans. And as she started lecturing me on the importance of attending class, I saw in the adjacent room that a girl, one of the very social, non-disabled, girls, was entering the office and asking for an incident report, and handed one right away. Being given the not-so-subtle threat of institutionalization, I saw very clearly that I was fighting in the ring with my hands tied behind my back.

Also that year, around the same time, I was in the office while the counselor talked to a teacher about a student they suspected to be autistic. I had been shading the windows of a building on newsprint, and they talked about his main interest and how they were hesitant of how to approach the parents (they also used his name, though I don't remember and wouldn't breach confidence anyway, unlike the counselor), and I remember stopping what I was doing, and saying "Autistic - that's like what I am" and they continued talking, as if I weren't there or neither of us mattered. I suspected it was the latter.

That year I got the distinct impression, that to them I was naught but a test score, a number whose value had suddenly dropped. It shook me to realize, how they were concerned far more about the financial impact of my absence from school, yet were perfectly content to have me warehoused in offices, and when in class or outside, to be constantly attacked physically and emotionally, and then blamed me for my behavior, both what was naturally my behavior and that which was induced by the circumstances, and say that this was justification enough to exclude me not only from school, but potentially permanently from society.

My parents got calls, day in, day out, about my "bizarre" behavior - mostly autistic behavior and catatonic-type stuff, with sporadic seizures, and talk of medication and institutions pulling on my mind and leading me to pace the floor more vigorously and at later advancing hours with each passing day.

I don't think I told anybody yet about how often I was just sitting in this office or that room the whole school day, or most of it. It wasn't a place for me to "calm down" or anything, and basically had a consistently elevated level of stress, which would spike at particular points, such as pending assault or the talk of the counselor.

At that point, I had little insight as to what exactly about me constituted something "autistic", but I had a definite sense that I was being treated unfairly for these things, even if I couldn't pinpoint them with words, and thus couldn't communicate well about them.

That is something that has been highly deceptive about me - my use of large vocabulary, writing skills, and the fact that I didn't have significant speech delay, hides the fact that I do often have difficulty finding the words and being able to describe important things, even when these fall under the category of what is usually considered simple. "I need a pencil", for instance, at age 10 was a phrase I needed a lot of time to be able to get out, but at another moment I could recite a 10-minute rant about things that happened during the school day, because I had spent the time during the school day to come up with and memorize the words to make this rant.

This is what I think has to do with the decreased reliability of speech for me over the last 10 years, even though communication is much better for me now. When I was 7, or 9, for instance, I knew most of the academic material being taught in class, so for one thing I could afford to "zone out" while constructing scripts and mapping out potential replies and replies to replies and replies to replies to replies, but not only that, I could also come up with the words and then memorize them.

One thing very different between 10 years ago and now: then - rote memory was good, maybe even excellent; now - rote memory is very unreliable.

That, and being in high school and college classes, even for classes I considered relatively easy and familiar in terms of the material taught, rarely was I so familiar with the content that I could afford to not pay attention to four hours of instruction (really, in first grade I really couldn't afford it either, but at that time I didn't care about my grades).

In fact, the only time that I had the luxury to "zone out" to the degree that I did in elementary school, was in high school chemistry, which for me was a review, as 2 years earlier I had studied AP Chemistry books and learned the material for the whole year in 2 weeks - though unfortunately the chemistry class did not cover thermodynamics much at all, which was a topic that I hadn't studied on my own).

In that year I took chemistry, I had been absent a lot (as with most years of public school), and when I got back to school (after weeks, almost a month being absent), there was a chemistry test. We had a substitute that day, so as he handed out the tests, I used my alphasmart to type that I had been absent for the whole chapter (which, while all the material up to that point had been stuff I'd already covered, I didn't know that for sure as I hadn't been in class to know what the test was about).

The substitute said, "Take it anyway".

Now this was quite the predicament. While I could theoretically take it anyway, and had a fair chance of doing well on it, what if it was all stuff I'd never covered before? Then, the teacher would have to make up an entirely new test for me to make up. I started typing on the alphasmart, to clarify this point, and also the fact that I had been absent the whole duration that the chapter was being taught, and the other students (as well as my absence record on the attendance sheet) verified this.

He told took the test back and told me to  write an e-mail to the teacher. So I started writing it. He told me to stop typing, and I froze for a minute, then started typing an explanation of why I was typing.

After a couple minutes he called me to his desk (which I didn't notice he was talking to me until some students around me pointed it out, as he hadn't used my name).

I went up and showed him what I typed. He asked me to spell my name. I did. Then I did some typing, and asked why.

He said it was a detention slip for disrespecting a teacher. I typed "If I may ask, in what way did I disrespect you?" and he said "you didn't listen." I typed about how I am autistic and often don't respond when my name is called, much less when my name isn't used, and that sometimes I need to type things, or I can't get words out, and that when I typed after he told me not to that it was to type this explanation of why it's necessary for me to type.

(Also keep in mind that this was my first year having an alphasmart, so I was not used to defending my right to communicate, whereas most times before this I had had no choice but to remain silent.)

Then at lunch I started writing my frustration about this, and asked a friend in AP European History about the iternerary for the day, and she said that we had a unit test, and a substitute, but she named the substitute she'd had, who was a lady most agreed to be nice.

I walked into AP European History next and guess who was sitting at the desk with the pile of tests?

You guessed it. The same guy as from chemistry.

There are lots of forms that oppression can take, and to those who are so accustomed to it that it is sewed into the daily fabric of their lives it can, at its mildest forms, be taken as annoyance, at its serverer forms, be taken as a "bad day".

The most important lesson to be taken away from the observation of these particles of oppression, though, is that each of them, regardless of size or impact, constitutes an increment of oppression coalescing with the other particles of injustice, however major or minor.

ON Growing Up One Arm in the Straitjacket

There is a spiral, a pattern that embeds itself into the order of the natural world. A mathematical oddity. An improbability. The Greeks saw in it truth and beauty. Today it has applications in the stock market. To most, it is just a pattern unfolding in a patch of dead, scattered sand.

The sand is what gets me. It’s what draws my attention, as does the lone paperclip that catches a small bit of light as it rests in the slight shadow of the nearby desk. The pattern, the golden spiral, is to me the ripple of an ocean wave transposed to a dream. A pure expression unbound by linguistic ambiguities, one that transcends definition and yields to unadulterated communication.

I spent most of my childhood afternoons in class gazing in various directions. Sometimes up the front of the classroom, sometimes the window. Sometimes a wall. Didn’t matter, really. It was the gazing - the thinking - that was the point. However I managed to elude the misperception that I was disengaged from reality as long as I did remains as mysterious to me as is the hidden meaning I am supposed to extract from such written expression as “;)”.

If my teachers didn’t notice anything unusual, my sisters sure did. And while not saying so outright, my mom certainly must have noticed, for all of her exasperated attempts to understand why “simple” things were so much more difficult for me than other things, things that would typically be considered complicated and challenging. I quickly ascertained that I was some different kind of person, a foreign person within the only home I’d ever known. Culture clashes were inevitable, but it was hard for either party to not feel personally targeted, as there was no clear physical indicator that my culture even existed.

Before anyone ever uttered the word “autism”, I was keenly aware that people like me were routinely shoved into institutions under the premise that their lives were not worth the trouble of accommodating them independently, and that such effort would be wasted on individuals perceived to be clearly incapable of enjoying it. I still remember watching a program on TV in the early 1990s, and all the gloom and doom predictions people made for the people featured, the people I pointed at and said, “They’re like me!” with childlike enthusiasm. My mom corrected me, said that I wasn’t like them, as they were severely disabled and would bang their heads. I wondered what made me so different from them.

Whatever my perceptions, the message was clear: there is a set pattern of development that typical children follow like a map with only one road. And if these milestones are not met within given ranges, then that is sign of disease process. Not a sign of having a different sort of body than people expected, not a sign of having a different sort of mind. Not a sign of difference or disability, but of disease.

This as the backdrop of my childhood, I made the unconscious yet purposeful effort to watch myself every second of my life that I was in public. Make eye contact, no matter how much it hurts, just do it. Explaining that the lack of eye contact means you’re paying attention isn’t good enough. No hand gestures, either. And don’t rock, but talk even if it pains you. You have to walk a certain way that is unnatural and difficult, you must keep your head at a proper, normal angle, and don’t let your mouth hang open. If you don’t keep this up, you look retarded, and you know how much your peers belittle the mentally retarded, as if they’re somehow lesser. If a loud noise scares you, or an offending touch hurts you, you cannot shout or move away. You must bear all intrusions, no matter how violent, with silence and good behavior.

I like to try this thought experiment with people who don’t understand how stressful this can be, people who think that if someone is capable of imitating “normal” behavior, that they should act that way all the time. Now imagine that you are a child, and I am a doctor. A teacher. A parent. I tell you that it is absolutely imperative to rock back and forth for most of your waking life, despite your never having had the inclination or the thought to do so. Although too much is forbidden, you may talk sometimes. But only on one subject, and you must never look at someone’s eyes, or even their face. If you do, you must stare “through” and not “at” – whether or not you actually understand this distinction. And whenever you screw up, I am going to correct you, and withhold rewards. After all, these things are good behavior. Only good behavior gets rewards. Bad behavior never gets a reward, because we don’t really want to see that anymore.

When I advanced to seventh grade, the reward for good behavior changed from approval to safety, as if the junior high were operating as a miniature institution. While the total population of the institution was about 500, only a small handful of us were held captive to its most prized tenet of conformity beyond possibility. If someone threatened my life, it was because I could not afford designer jeans. If someone stole from me, it was because I look strange when having a seizure. If someone beat me up, it was because I failed to acquiesce to the moral superiority of my verbally abusive peers, but rather entertained the foolish thought of defending my dignity.

I sometimes like to think I have permanently overcome the flashbacks I still from time to time experience, that I am strong enough to stare my memories in the face as they creep along at my heels and to say “no more.” I sometimes like to think that once these personal emotions are resolved that I have defeated the problem. I sometimes like to think that my experiences were aberrations. As I face school, public transportation, job interviews, dating, adoption and parenting, though, I cannot ever ignore the fact that what has happened to me is a mere appendage of a wider phenomenon. Regardless of my own circumstances, through the collective experiences of the autistic community, I will always have one arm tucked firmly out of sight in the straitjacket.

Sick, and Other Thoughts

Club Rush is this week, which means I'm going to represent the clubs I lead (including Gay-Straight Alliance and Autistic Rights Advocacy). Hopefully more people will join and attend this semester, now that I've got things a little more organized.

I got a new magnifying glass from the Braille Institute this Friday, so I can actually read my textbooks now! :) I can now get to a backlog of work I have for some of my classes.

For the Club Rush day, I plan to have at the table a jar where people can put a dollar bill or coins into, to go towards our club's book fundraising drive to donate positive and informative books about autism to the local libraries. I am thinking of calling it Education For Autism.

I also want to hand out stickers, and I intend to have some informative videos playing on my computer. I am also putting together flyers and information sheets.

An interesting thing about being sick, I've noticed, is that it takes longer for me to execute certain actions, such as brushing my teeth or going to the bathroom or fixing tea. My skin is really very sensitive right now, much more so than usual, and it is very difficult to coordinate my thoughts.

Hense the rambling nature of the post.

The other night I got frightened because I had had hardly any sleep, and on the ceiling I saw this circle of reflected light on the ceiling. I couldn't figure out the source, though, so I started walking around the room and the hallway, looking to see if I was blocking out the light source and making the ceiling reflection disappear. Twice I succeeded in this, but it wasn't until the second time that I realized what the light source was.

It was a light from the laundry room, which I soon discovered was bounding off of a CD left on top of the sofa. I put it in between the pages of a notebook, as my eyes would play tricks and make me think the light was moving.

It reminded me of when I was very little, maybe about three or four, and I would sit with these small rectangular mirrors, and bounce light from them onto the walls. My dad would join me, and one of us dubbed them UFOs.

A funny thing about the IEP meeting a few weeks ago -- apparently autism isn't even listed in it! They had just listed Speech and Language Impairment. The actual IEP report also has some other glaring omissions, such as saying that adaptive/daily living skills are "not an area of unique need" (even though I'm 18 and in less than a year supposed to live on my own).

It has some mention of social skills difficulty, and states that I have "difficulty to maintain detailed organization with [my] papers and materials". True enough, at least for the latter, but I find it ironic that the difficulties I have that are quite common among people my age get mentioned specifically, whereas my more unique needs are completely ignored, despite my specific input.

In fact, my only social skills deficit (that I can think of) is in cutting into a group that has already formed. My main thing is with figuring out what and how I need to do things in order to get around. How to maintain daily living skills. Why nobody but me (and occasionally, my parents) has been mentioning these things, which are the most important as I'm going to be living independently, I don't know.

My primary issue: Trouble organizing, I can get help from the tutoring and help center available for disabled students. Trouble getting into groups, might impact in lab work or if we have to choose groups for small discussions, but I can usually get around that by approaching the teacher and asking to be placed in a group.

But there isn't going to be a teacher in my dorm room reminding me to brush my teeth and take showers and eat and drink and do laundry. So far, my efforts in these things, even if starting successfully, have deteriorated and I stop doing them.

And so, being sick, I now factor in the additional difficulties of when I'm sick. These things take longer, and get done with far less frequency, when I'm sick and also alone. I usually spend a few weeks to a month or two out of the year sick to some degree (usually only 3-7 weeks a year of really bad -for me- sickness, which is what I'm in the middle of).

I also missed my astronomy class tonight. It's really too bad, since we're starting on new material, and I would've learned what my grade was on the last test.

A Lesson on Embarrassment

When I was young, say 8 or 9 or so, I was in the waiting room of a doctor's office. I don't remember whose appointment it was, or why, but it doesn't really matter, I guess.

It was a long waiting time, and they always have those awful fluorescent bulbs. They use to bother me more when I was a kid, giving me headaches and making it hard to focus and process information and whatnot. The effect is the same now, but to a lesser degree.

There were other kids around. They played by the corner, where the kids' toys were. I wanted to go join them, but my mom said I was too old.

I love that thing where there are the beads, and there are the thin, plastic tracks they can follow in curvy paths to the bottom. I liked to envision it as an advanced public transportation system. Please board the Green Bead Line on its way to Chicago. Now boarding. Please have your ticket ready.

But I was too old, and certainly my sisters, one 2.5 years older than me, approximately, and one almost exactly 5 years and 4 days older than me, were too old, though they didn't express interest in these toys. When I was 13 visiting a neurologist for my seizures, there was a picture book about a Brain Cell. Or something like that. I should write fanfic for him.

The lights continued to glare, and people's names would be called, people picking up and flipping through magazines, babies crying. It was all so much. So, I made a dive for it, and I burrowed myself under the chair I had been sitting in and pretended I was in a Bomb Shelter, hiding from horrible and yet unknown threats from above.

My mom tried to get me out from under there, and tried to recruit my sisters for help. But no, they must be only clones of my family, trying to get me out of there so that I wouldn't be safe from the attack!

My sisters ended up joining in my play. Or at least, I thought so. Turns out they were just making excuses to be rowdy, but I didn't know, and I thought of them as the intruding army. I covered my ears so they wouldn't use their brainwashing propaganda tactics to turn me into a vampiric zombie. As presumably they would.

So I got out of the shelter and started pacing about in circles, humming to keep their threatening broadcasts from reaching my ears.

My mom whispers loudly, in that frantic-type voice, "Melody, you're embarrassing me!"

Without pausing in my circuit, I say, matter-of-factly, the wisest thing I believe came out of my mouth during my youth: "I can't embarrass you. You can only embarrass yourself."

Of course, what I meant was: The fact that I'm doing something doesn't embarrass you. It's that the thing I'm doing is something you don't look at as socially acceptable, because of what others might think, and so because of your attitudes, you are becoming embarrassed.

I thought of this as I took my written exam for taekwondo, and there was a question about attitude, and how it's important how you react to stuff.

"Life is 10% what happens to me, and 90% how I react to it."

I knew how I would react to it. My mom now knows how she will react to it. How will you react to it?

High scores = high-functioning?

The high grades leading to the conception of the individual as "high-functioning" --

Although there are other reasons I would be called high-functioning (that I had no speech "delay"), I can guarantee that had I not had such high test scores and sometimes grades, that I would have been perceived much differently.

People in the schools would have probably paid more attention to the following:

-I rarely completed any assignment in elementary school
-I rarely spoke during elementary school until about grade 5 or 6
-Whenever I approached a teacher, I fumbled for words, could not form words to ask a question (still do)
-At age 10, it took me between 1 hour and 2 hours to figure out how to ask for a pencil.
-I would bang my head when frustrated. (still do, though not nearly as much - once every few weeks or so, rather than dozens of times a day)
-When students arrange in groups, I always sat where I was. (still do)
-I rarely respond to my name on the first or second or thrid time called. (still do)
-When people touch me, I growl or scream, and get away from them (sometimes still do. I almsot always fidget, make some kind of noise, but I have toned down my reaction)
-Perfumes, lotions, body sprays, certain bar soaps, shampoos, air fresheners, strong deodorants, etc. made me cough and eye water and dizzy (still do, but can now tolerate some of the milder ones to be around, but not wear)

Until the third grade, I was an extremely passive student at school when the bullies would mock me and physically beat me and I would do nothing, would rarely mention it, and when I would, I mentioned as if I were describing the items I had for lunch. It was part of my daily routine, and my limited experience and reinforcement from supervising adults taught me that this was normal. I figured that this was just part of life, to be in fear.

My dad responded entirely differently. He fought with the schools for me, though I encouraged him not to, since I didn't think it was "a big deal" as I used a stick to methodically clear the tread of my sneakers of the mud and sticks and worms that protruded in silent imprisonment. He told me it was okay to defend myself, and by third grade, I did. But there were always so many more of them, that my efforts were useless.

So I had some major aggression issues, which had been minor aggression issues prior to school, when they were fueled solely by the bullying from my sister Crystal. Since I was never strong enough to truly do anything about this, I didn't express my aggression on the schoolyard, but rather with a bitter self-hatred, a staunch regimen of self-blaming, self-punishing default of perception of my actions.

Maybe if I hadn't had the high IQ tests, the perfect scores on spelling tests, and the tendency to use a plethora of words that I had no idea what they meant, then maybe I could've gotten some more help with things that now I struggle with, such as laundry, dishes, brushing hair, fixing food, speaking spontaneously in understandable fashion, job interview skills (there's no way in hell we're going to afford even 20% of a college tuition).

There are many things I'm going to need to catch up on, things that I could've learned at a more natural pace if I'd started learning them earlier on. That's one small reason why functioning-labels damage; they bring to mind a preconceived view of what are the skills and deficits of this person. Obtaining services from my school is going hard because of this. I overheard the Director of Special Services talking with another about how I can speak/write well with adults, but have trouble in social conversations with friends.

Actually, I have a number of friends, and I am quite satisfied with how I converse with them. On the other hand, when asking questions, or clarifying needs, this takes tremendous effort for me to convey. When evaluated for speech services, they say that I am needing help with pragmatics and nonliteral language. I do not deny that with these I have troubles, but certainly, more pressing an issue for me is to be able to communicate smoothly, without stuttering, taking 2-minute pauses looking for a word, and these types of things, which will help me to interview well for a job.

Considering that even autistics who get a Ph.D. and are well- to over-qualified for a job find the interview is what trips them up most often, it seems that these concerns should get attended.

Speech is yet to resume this year for me! It is so late; I should contact the school immediately.