Showing posts with label communication. Show all posts
Showing posts with label communication. Show all posts

20 January 2009

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.

04 August 2008

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.

08 March 2008

Calling All Advocates

This is my first autism-related video.

http://www.youtube.com/watch?v=S0e8adgO06E

This is a call for responses of why you are active in autistic rights, whether by blogging, or using YouTube, or whatever you do and why you do it. It calls for a multitude of statements from our community as to why we believe the things we do and why we are worth fighting for them.

Here is my response:

We are living in a time where the voices of people long ignored are starting to be heard, if only faintly, for the first time by thousands or even millions of people. This is a movement not only for our rights, but a movement to address questions fundamental to human existence.

I blog because I can't let another moment go by where someone speaks for me.

I make videos because it is through motion and sound I most effectively communicate.

I organize because it is only through solidarity that we can achieve a better world not only for our generation, but for the generations now coming into being, and those I aim to preserve their ability to enter into being.

I make a statement not because I want to, but because I have the moral obligation to do so.

I must raise my voice, or who will defend me when I am silent?