No Shirt, No Speech, No Service?

Well...I was wearing a shirt. It was pretty chilly that night after all.

In the recent times at the cafeteria, I have had difficulty with telling what's what on the menu. Given that I am vegan with a probable dairy allergy or intolerance, this can delay me a bit.
So we, as part of the student disability organization, put in a request for individual labelling of all the items.
Which has not come to pass. So I will put in another request of this.

But in the meantime, what was supposed to happen if I was confused about
what an item was, is I was supposed to get help from someone there.
Since I often can't talk in there, I go near to somebody and point to
the location, and use body language and such. Which usually takes a long
time because I have a hard time identifying somebody who works there,
but once I see them then they see me and help me and no problem.

However, today right from the start I was in front of somebody working
there (who was the cashier working, so busy I understand, but still
there were several times when there was a lull of people coming in and
she went to do other things such as going to the coffee and wiping
tables, walking past me, giving me a look and then passing me by).

I start to think, after 10 minutes or so, that in the off chance she
hasn't seen me standing there, and after 20 minutes try to exaggerate my
expressions and flapping and rocking more. Now by this time I didn't
even care about the dessert anymore, but I just didn't want this whole
"ignoring me to go right past me and do tables and stuff"
to go on.

After about 40 minutes when she does acknowledge me (after having walked
past me, cleaned the dessert table I was standing right next to), she
said, "Okay, what do you want?" Indicating, aside from the eye contact,
that she had indeed seen me trying to get her attention.
I pointed to the dessert I was interested in and to the sign that read
"vegan" to the side of it and postured myself questioningly, as I wasn't
sure that it was referring to that dessert or not (there was no board
listing the desserts tonight).

She said, "Yes, you can have a dessert if you want."

And walked off. Then she said to another adult there, "She's always
acting like this."

Then later on she kept going to clean tables and glancing at a newspaper
as I kept trying to get her attention, using the body language of the
sentence of "But that doesn't really answer my question" and continuing
to flap my hands and look and point at the dessert table and the "vegan"
sign, as well as to look in her direction.

When she finally did come back, she said, "What do you want?" and picked
up a dessert. I pointed at the dessert, then pointed at the "vegan"
sign, and then she said, "Yes, it's vegan. Do you want it or not?" and
held it in front of me. I took one from the table top. She then said,
"You have to talk louder so I can hear." I then touched my throat and
moved my hands around so that she may understand that I was unable to
speak, not speaking softly. She then said, "There's nothing wrong with
your throat." Which A) she didn't know even that because I didn't talk
in the greenery today and B) obviously she doesn't know about interacting with autistic people.

I'm not sure what to do except for there to be better understanding
among school staff (including dining venues) about how interacting with
someone who's partially non-verbal doesn't mean you have to freak out or
think that they're non-communicative, particularly when clearly communicating
about something this simple. I hate this myth that NV = not
communicating, and even though I'm mostly verbal I run into it a lot.
It's not that you don't notice that the person who is rocking and waving
and pointing at the table and looking back at you needs help - it's that
you think their method of communicating their need is lesser, and
therefore not in need of attention. That's exactly the kind of attitude
I'm constantly up against, and the kind we need to educate out of
existence, so that we prevent consequences that are far more serious
than waiting an hour for a meal or a dessert.

Note: In another correspondence about this matter, there appeared to be a bit of misperception about where my complaint lies. I wrote the following to clarify:

This kind of dismissal of nonverbal communication and derision of the individual who communicates atypically, has led in the past and if not address will continue to lead to, far more serious repercussions to the individuals experiencing these attitudes (some of them from a non-school setting such as institutional abuses, whereas many, many others may also occur in a school setting). It is like a parallel to a woman who is forever considered a "little girl" and not considered capable of (or deserves protection from) making decisions for themselves.

Transitions

Transitions can be difficult.

Especially when you are sick when making them.

I had to make a trip to the doctor by bus, and forgot that you have to pull the thing to make it stop. So I just stood up and started to walk out, when the bus was moving away!

I was falling back and grabbed onto a seat, and finally grasped onto a string to pull, though the bus driver seemed mad at me, saying that "it's not an automatic stop there". Well it's not that I thought that it was an automatic stop, it was that I forgot that you had to pull anything at the stop to begin with!

I knew that autistic people can have difficulty generalizing skills to different places, but I didn't think that I had a difficulty with this. Sure, I have difficulty navigating new places I've never been, but I usually think of the rules as something that would translate well from one situation to the other.

But that's why, just because someone has demonstrated being able to do something once, doesn't mean that if they aren't doing it now that they're just not trying hard enough. Even if the same person was able to generalize across situations before. And I'm pretty sure that I'm going to generalize some skill or other to some other situation in the future. Would that suddenly make the incident at the bus "not real"? An exception (even if there were multiple examples like this)?

My AlphaSmart hasn't been working, most likely due to a malfunctioning battery, so we need to get a new one. So I brought a pen and paper. The nurse asked if I was listening to music at one point, because she was saying and doing so many things I had to keep track of, and I had to make sure she used the not-auto-matic blood pressure device, which I asked just in time. Then she asked if I could hear her or if anybody was there.

I've been working on alternatives to self-injury (which is not because of being depressed, which I am not - it's because I am frustrated), and I like sewing a lot, but the main problem is that it's not immediate enough - I have a lot of physical energy that needs to go NOW. But I do like the calming place that sewing gets me to, whereas things like hitting a pillow or stomping release some of the energy, but the tension is still there. Perhaps I will try combining them, hitting some external, inanimate object instead of myself or other people or other people's property, something immediate that just releases the frustration, then transition from that into something calming like sewing.

Writing the musical Aspielicious still. Plot and characters mostly fleshed out, working on songs a bit more now, getting to the heart of the matter.

The R Word

For some reason my comment failed to publish on this post, so I'm putting it here:

This is patently offensive, and that this was allowed to go through to production this way is very telling how much farther we need to come before the general public realizes how harmful this is.

And I don't buy that "well, we're not REALLY making fun of disabled people, we're making fun of blah blah" - when you used that word, there's no way that it's NOT about disabled people, even when it's not meant that way, and to be so resistant to change use of a WORD. It's like how I saw a news person on TV say that when they used the word f****t in school, that they didn't REALLY mean gay people. It's a pathetic excuse.

I am autistic, and have had an IQ score of in the borderline range as well as in the gifted range, and have been called retard as well as a bunch of other physical and verbal abuse at school, which was justified by both students and counselors by my "weird" behavior, so I must just "expect" that treatment because I look so odd to them. Well, I can expect it and be used to it, but that doesn't mean it's right and it doesn't mean it should go overlooked.

Whatever the IQ score, whatever someone's adaptive skills or disability or whatever, it is hurtful and completely unacceptable that this passes for acceptable usage. I have know decent, kind people who have used this word, because they have absorbed it and also absorbed the justification that it's "not REALLY making fun of disabled people", but that's why this kind of thing needs to be countered - I don't want even MORE otherwise good people absorbing and using this offensive language, simply because society presents it as mainstream and OK.

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.