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.

Pushing Limits Interview

Today I was interviewed on KPFA (94.1), for the program Pushing Limits, which centers around disability issues, about autistic rights and aspies for freedom.

The program can be listened to at:

www.kpfa.org/archives/index.php?arch=27634

The questions were given to me prior to the interview, as well as displayed on a thread at AFF, and these were my answers I wrote out ahead of time, so that I would have a reference of what I wanted to say. The interview covered some other stuff that I didn't have written out, and I didn't get to all of these points on the program (though I had a lot of time and got to the crucial stuff), so here are my prep notes:

What is autism?
Autism is a neurodevelopmental condition that generally affects speech and language, socialization, and sensory processing. Autistics vary greatly in how this manifests, as some people are completely non-verbal, while others have little to no difficulty with speech and language, but most of us are somewhere in between, and that goes for a lot of traits.

What does neurodiversity mean?

Basically, that neurological configurations that differ from the norm, such as autism, are not inherently inferior to more typical configurations, and trying to make the neurodivergent conform to typical ways of doing things, often creates more problems than it solves.

Why did you join this AFF site?


I joined AFF, for a couple of reasons. One is the community - when I'm facing discrimination, or trying to figure out how to navigate an airport, there's a lot of support, from a lot of people with diverse knowledge and experiences. The main thing is the activism - it's easy enough to say, yes, I'm autistic and proud, there are better ways to improve autistic people's lives than by funding research to make sure no more of us are born - but as it is today, not many people are hearing our voices. That is changing for the better - it's better than 5, even 2 years ago, thanks largely to the work of autistic self-advocates, but we still need to make a lot of progress.

Do you know of the wider disability rights movement?

In my research of autism and autistic advocacy, I started to realize not only how much autistic rights are tied into things like gay rights, but also to disability rights. Some believe that all autistics are disabled or that none of us are, but from what I've seen it varies from person to person, especially when looking at our situation through the lens of the social model of disability.

Even autistics who don't consider themselves disabled, and are capable of employment, even if they have degrees, a lot of times won't be hired because of unusual eye contact or body language, things that have nothing to do with their job responsibilities. Others don't attend out-of-work social events, and are seen as not being a "team player", even if the reason is that they don't see obligation to the events and that they would stress them out too much.

Where would you like Autism Rights to go?

I would like there to be better information and supports to the families of the newly diagnosed, and for there to be less stigma. We should get to a point where it's not considered an undue burden to write out instructions instead of saying them, for instance, or to provide autistics access to communication, whether by using pictures, signing, typing, speech, or any combination of methods. When a parent gets told their child is autistic, and that parent sighs in relief because now they know their child will have access to a good education and services and opportunities and choices for their future, then I might say we've reached our goals.

Also I'd like to see the Judge Rotenberg Center shut down, for their use of electric shocks and other harsh aversives on autistic and otherwise disabled people who are kept there. They have withheld food from people for not getting the right answers on a computer, and administer the shocks in such a way, that the person receiving it has no way of even knowing where on their body the shock will occur. There are many complaints about the treatment of people held at Guantanamo Bay, but when acting in these ways on disabled people in the name of "treatment", then it's allowed to go on for decades.

I would also like more of a venue for autistic people to voice our opinions and advocate for ourselves. There is too much of a trend in having non-disabled people "speak for" people with disabilities, and this even gets reflected in the names of organizations - for instance, the pro-institutionalization group called "Voice of the Retarded", or "Autism Speaks". The people leading these groups assume our voices, and in so doing assume our goals and intentions. I'd like to see more support going towards organizations like the Autistic Self-Advocacy Network, and Autism Network International, which are led primarily by autistics and allies. Autism Speaks does not speak for me.

Does this community here give you positives where the larger society can't meet those needs?

The larger society is certainly capable of meeting many of these needs, through greater understanding and acceptance, which runs deeper than garden variety awareness, though there is one need that I don't think the larger society will ever be able to meet, and through no fault of anyone - there is a certain...recognition, almost, a deeper kind of understanding that you find with someone who's wired a lot more like you than most people, and to be able to communicate with a whole bunch of such people, who aside from being autistic have a huge variety of experiences and interests, there's a certain connection that is hard to describe and impossible to substitute. But as for other things, like acceptance and removing roadblocks to education and independence, society in general is capable of meeting those needs, and I have seen individuals demonstrate this capability. It's just that we're not there yet.

Happy Autistic Pride Day!

I started the party last night, and stayed up the whole night. Didn't really have much to do, so I took an online Raven's IQ test around 4:30 this morning.

It was fun, but I must've been so wired on my imaginary coffee, because I got through the first three quarters of the thing in five minutes. Got a 104 (not a high fever though). Not bad - though I still feel foolish for having zipped through it, thinking I was getting everything right. Ah, well. Good to put arrogance to bed, even if the rest of me failed to nod off.

Another way to celebrate: I figured out how to do a makeshift version of smores involving my microwave. I learned from the last time my lesson about plastic in the microwave, and the WRONG way to melt chocolate, so I did some research, and heated up some water, then put the chocolate I wanted melted in a measuring cup and let the heat energy transfer from the hot water to the plastic to the chocolate.

It was a good experiment. One I'm sure any self-respecting hungry chemist would be glad to review. ;-)

Still working on a couple video projects so far. One is part of a thread on AFF, which will involve me talking about various experiences as an autistic person.

Another one is more of a self-contained, mini-documentary (mini both for time length and because of a limited selection of subjects). Also am working on the planning stages for another video project to submit to the possibility of being included in a...er, a London something, I can't remember, except that I'm excited to submit my contribution as soon as it's ready.

Gay marriage! Not htat it's new news, just, yeah, they talked about it more on the news because the licenses are getting issued. Ah. Gotta love California. I wonder sometimes what would be the social-political analogue of the legalization of same-sex marriage to autistic rights.

*shrugs*

Well, don't think it really matters. There wouldn't be an exact equivalent anyway, in terms of nature of it. Though I do sometimes worry about the threat of people who claim that autistics would make lesser parents, which particularly strikes a nerve with me as the daughter of a spectrum dad and me, with hopes to raise (a) child(ren) at some future time.

Watch this page for pics! I will edit them into my post as soon as I get them.

Oh! Boredom has it's better edges. Apparently I'm a chiuwuwa:

You Are a Chihuahua Puppy

Small, high strung, and loyal. You do best in the city with a adults - young kids could crush you!

What Breed of Puppy Are You?

Autistic Self-Advocacy Myths

The following is from a post I made on the Autism Speaks forums. I addressed it to the parents of autistic kids who have only seen neurodiversity and autistic self-advocates as being against helping their kids, to demonstrate the realities of what it means to be against cure, to show that we're not just some highly successful math geniuses who think autism is just a difference rather than both a difference and a disability. Don't think it was very effective, though, considering nobody has replied besides me (only 36 views, too).

I hate to see the polarization between autistic self-advocates who are against cure and the people of autism speaks and cure autism now. Because the truth is that we are all out to help improve the lot of autistics, and it's a shame to see people so easily become divided.

It happens when an aspie writes cocky that they are superior to NTs. It happens when accepting autism becomes dirty words with implication that we are to ignore people's difficulties that are due to disability and pretend that they don't struggle.

These, of course, are the more extreme of the both sides, and they do not represent the true motivations behind the causes - which, as stated already, are for the bright futures of autistics who are all too often left in the dust.

The truth is, accepting autism doesn't mean letting kids bang their heads and pretend that autism is a wonderful, positive thing that everyone should want. It means looking at the various limitations and disability and helping the person to adapt to the world and, where reasonable to adapt the world to autism. Most people I have read on this board seem to already fit this description of loving their kids as they are and wanting to help them get along, except that they also express the desire for a cure.

Autistic anti-cure self-advocates support helping people to talk, or if that doesn't work, to help them to communicate by typing or signing or such. And of course to also try to help with self-help skills (I myself am 17 and can't brush my own hair that is about shoulder-length by myself. I have, however, learned toileting skills and how to wash myself).

So I identify as autistic (Diagnosed Asperger's age 10). However, I am not so reactionary that, just because I am adamantly against cure for autism that I would deem anybody who supports it to be some "conformist NT" or some such nonsense. I want to write on behalf of autistic self-advocates who, like me, reject these extreme views. (The extreme people tend to be far more proliferate (is this a word? I tend to use words that I have no idea what they mean) and so are more noticeable.

I understand that there are many people whose needs for supports and services far outweigh mine. I speak, have the self-help skills I mention, and such things. In fact, I for a long time, while completely against curing Asperger's/HFA, wholly supported curing LFA autistics. It wasn't until this summer that I reevaluated my views and realized that I had been misguided.

Through the Internet, I got to converse with and read from autistic people who are considdered classically low-functioning Kanner's type autism. People who were, variously, mentally retarded, or nonverbal, or lacked in many "basic" self-help skills. Usually fit more than one of these descriptors. And they are against cure, too.

I am only asking that you reevaluate your views of autistic self-advocates and the goal of a cure. I will not try to use scare or sympathy tactics to try to sway you. Of course autism isn't easy. And even though I am what would be called high-functioning, I don't feel any advantages or special gifts that I attribute to autism. My heightened senses, they lead me to sensory overload. It is a foreign concept to me what it is to derive pleasure from this sensitivity.

So I don't feel I have any "autistic gifts" and most certainly not savant abilities. In any case, it is my whole point that people of all opinions and backgrounds and experiences need to tone it down, consider the perspective of the other side, and to look at things a little less narrowly.

After all, some of the deficits of autism (theory of mind, perspective-taking, self-absorption) are also as commonly universal in NTs, except that the deficits are expressed differently and to different degrees (such as, a NT who would pass the Sally-Anne test but doesn't understand why her sister could possibly prefer strawberry over chocolate, or the autistic who fails miserably the Sally-Anne test but considers the differing views and experiences of a cyber-audience - such as me).

I want to add that the last example gives impression that it is meant to categorize NTs as unviersally having the skill of passing the test while not considering other people's different perspectives or autistics as universally being unable to pass the test but being able to see other people's point of view. I was just trying to show how it is dangerous to oversimplify the categories and in doing this did the same. I have known online and in person many NTs and autistics who are the opposite of the example, which was intended to be a randomly selected (apparent) contradiction of the definition of the skills and deficits that NTs and autistics are presumed to have. To show that it is not so cut-and-dried as professionals sometimes make it seem.