Revelation of the Self: Confronting the Internalized Ableism of my Identity

There are things I have learned about myself, recently. Things that have been true for a very long time, but which it took time for me to process as a part of my identity.

Why does it take so long for me to connect my reality with its implication?

Perhaps it is simply another way in which my brain gets stuck.

But I think there are two other reasons. Both are a kind of internalized prejudice.

One has to do with social norms, with stereotypes and stigmatization and fear and contempt. If these traits are part of my identity, then I am Like Them, and They Are Different and They are Bad and I am Not Like Them.

The other is an internalization of the refusal to respect marginalized people’s self-definition and self determination. If Those People cannot define themselves, and I cannot define myself, then I certainly cannot define myself as One of Them.

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Why I (Still) Boycott Autism Speaks

(Note: This is the commentary from the link to my “Why I Boycott Autism Speaks” post. Something about the format of my blog made it really hard for me to read, though, so (under the assumption that some other people would have difficulty reading it also) I decided to put it in its own post.)

Since I posted about why I #BoycottAutismSpeaks, they have posted a “call for unity”–another attempt to silence the voices of the Actually Autistic people they claim to want to help.

I want to make an addendum to this post, however, because I mention my experiences with meltdowns, and I don’t want anyone to take what I say about my meltdowns as evidence that being nonverbal is The Worst Thing Ever. Being nonverbal sucks for me, but its not because there’s something inherently wrong with being nonverbal, and it shouldn’t be taken as a commentary on the experience of other autistic people. It sucks for me because most of the time, I’m not nonverbal. Verbal and written communication are my main methods of communication, and so far I haven’t been able to substitute written communication during the periods in which I am nonverbal.

When I become nonverbal during a meltdown, it’s scary. All of a sudden I can’t communicate, and the people around me are getting increasingly frustrated by that fact. That’s what’s so hard: not being able to communicate.

Communication seems to be a big thing for Autism Speaks–they talk about how autistic people are cut off from their parents/the world, and it seems clear they consider being nonverbal to be a mark of being “low functioning.” But there are plenty of ways for people who are nonverbal to get their thoughts and feelings across, even if finding one that works can be a difficult process, and even if those ways aren’t foolproof. The thing is, communication isn’t a one-person process. In order for autistic people, nonverbal or not, to communicate, you have to actually listen to us.

And if Autism Speaks really wants to help Autistic People, they need to start doing just that.

Why I Boycott Autism Speaks

I meant to link to this on here when I originally posted it, but was somewhat distracted at the time due to circumstances in my personal life, and forgot.

Since I posted this, Autism Speaks has posted a “call for unity”–another attempt to silence the voices of the Actually Autistic people they claim to want to help. As a result, I felt it appropriate to add more–but formatting is annoying, and the text was hard to read, so it is now its own post.

Disabled Dragon

I wrote a thing a little while ago, which was supposed to be a short comment on my share of this “why I boycott Autism Speaks” post on a diary of a mom, but then it wasn’t short or really related to that particular post. Basically I accidentally essay-ed, which is a thing that happens.

Anyway, I said I’d post it as my own “boycott Autism Speaks” thing, but then life happened and spoons were none and anyway here are the words (slightly edited because Facebook took away my edit option for some reason?)

(cut because wow, that is rather long actually.)

View original post 536 more words

Certain Special Interests

We’re talking. Well, mostly you right now, and I’m listening, or trying anyway, really I am—only about four sentences back you said something that made me think of The Show, and now it’s taking most of my concentration just to keep my mouth from opening and spilling out all the words that are going now in the middle of my head.

(I say it’s the middle. Most times they seem to go on in the back, The Show and whichever other thing it is right now—folktales, at the moment. Cycling and connecting and explaining everything that happens outside, and most of what’s inside, too. And the front of my mind is occupied right now with worrying about my mouth and my face and whether I should nod or laugh or “hm”, so the middle it is.)

You’ve stopped.

That’s good, because now I can talk. It was getting very hard to wait.

Except that’s bad, because now I can talk.

And I do. I talk so much, and some of the words go in circles and some get twisted up in “um”s and “like”s and “I think”s, but they all come out eventually, I think, or most of them at least.

Then I pause to take a breath, and to let you say something, because I could talk us to the moon and back but I like when other people say things too—and anyway, I realize, I’ve been talking a long time now, and its probably too long, because I always talk too long.

Now you’re talking, and I really am listening, but it gets difficult quickly because there’s lots of other things to think about, like what faces to make and what sounds and the way my leg is pressing against the chair and the fiddling fingers that I’m suddenly very aware of.

And now I’ve thought of something else to say, a lot more things, and so there’s not saying those to worry about as well.

You’ll get to a pause soon probably. When you pause, that means it’s my turn to talk. Then I can say the things.

Except you’ve sort of changed the subject now. And now I’ve got more things to say—but I wasn’t done with The Show. I want to go back. The words are starting to fill up my mouth, and if I don’t let them out I feel like maybe they’ll fall out on their own anyway.

I am trying very hard to remember the rules, but it’s  hard, and now I’m having trouble thinking of anything but The Show and how badly I want to talk about it and how that’s against the rules, and I’m forgetting to do the faces and the sounds and things, and that’s bad, because those are important.

I can’t really hear what you’re saying. It’s getting blocked out by everything else.

I try very hard for a while, but eventually it stops working. I need to go back and let out all the words that have been building up, or I won’t hear anything you say. So I ask if I can talk about it, and I think that I probably sound desperate and I hope it’s that because desperate is better than bored. But maybe I don’t sound either because there isn’t room in my brain for making tone sound right anymore.

I talk a lot. Sometimes you join in, but mostly it’s me. I have more to say about this than most people seem to. I have more to say about this than almost anything.

I can’t stop now. Eventually I realize I’ve probably been talking for quite a while, and you’ve stopped joining in, and usually I think people get bored by now. So you’re probably bored. I think I should stop—this is ridiculous, and I’m being annoying—but there’s too much momentum, and I can’t seem to make myself. I will stop eventually—by now, I’m wishing for something to happen, for you to say something, whatever, because I’m starting to be concerned. Because I’m annoying, and people don’t like annoying people, and people don’t want to spend time with people who they don’t like. Because no one talks for this long unless they’re a narcissist, or at least self obsessed. Because no one has this much trouble listening unless they’re one of those things. My mind is a whirlwind of “because”s but that doesn’t stop me talking, because the words have been saving themselves up minute after minute after minute, and now they insist on being said.

Speak English

When I was younger people would tell me to
speak English because I guess the words I used were
Toolongtoowrongtoo
Obsessiveimpressiveprecise and
Specific like
“iambic pentameter”
means what I mean when I say it and
nobody knows what
“trochaic tetrameter” means so stop
showing off
and isn’t it funny how sometimes I can’t
understand English at
all

and
I guess maybe I speak in
languages that don’t make sense like
ReferenceAllusionFictional
character on a tv show and
ReadingAboutShakespeareAt5in the
Morning and
AccidentallyPickedUpSlang because I
Forgot to stop trying to fit in

And sometimes
ColorTasteSoundNumber wave
When I mean
TouchFeelSmellSee think
or
FeelingWriggleScribbleWrithe
When I mean
SenseHappyBurstingItch

Like sometimes my mouth forgets how to make
words or my brain forgets to
send them and I end up
prrrrrrrring like a cat and
flapflapping like
my hands are loose lips sinking
ship after ship after ship

And sometimes people talk and the words fly
past my head like particles of dust that
flutter out of the way of my hands  and when I try to pin them down they
speed like
dreams.

And when I can talk in
sentences and understand
how people string together thoughts I guess they call those
“Good days”
Even though they change by
hours
But when I talk my brain gives me words like a
textbook and I guess I’m still doing it
wrong.

And when I was in high school I could list my symptoms like I was
WebMD but maybe
that’s because I spent three years with no one but
doctors
But fourteen year olds don’t talk like
medical reports so I guess I was
faking.

And sometimes when I talk I forget that I need
Tone
or my voice won’t move the way it needs to and my face won’t
curve and my throat won’t
laugh and they told me in linguistics that English wasn’t tonal but I don’t think
that’s true.

And people who are good in English class you’d think would be good
at English but I can
only read things half the time and sometimes
English stops making sense and I understand
sarcasm but only in theory and I understand
metaphor but only in books and I understand
people but only when I can map their arcs like
waves inside my head

And I spent my life mapping the English that they speak in
written down worlds  and still only grasp it sometimes
but the English that they speak in
life
eludes me.