I’ve been watching Sabine on Netflix.
I am finding it really difficult.
It’s a documentary type thing so it’s all real as far as I know.
Part of it is the comparisons. They intersperse footage of her from when she was younger and passed at least somewhat better, and from now. She lost some abilities and gained a lot of weight. And I keep thinking how much I hate when people hold me up against who they think I used to be and find me wanting. It is a really maddening feeling.
Also there is the group home and that part is the hardest in many ways.
She’s exhausted all the time and she wants to rest and they just prod her to do more and more. I remember being on a toxic dose of Clozaril and being expected to function. If I went in my room and laid down it was psychotic withdrawal. Sometimes they’d force me to sit on the couch in the living room. I couldn’t stay awake there either. I sat down at noon and in an instant the sun was down and there was drool all over me. She sometimes looks that tired and people don’t get how hard it is to force your body to move around and do things.
And like I know in the early stages of my movement disorder. If you keep a person moving within a routine all day, you can sometimes stop it progressing any further. But once the movement disorder is entrenched enough, the benefit to doing that drops off. There’s also a huge difference between agreeing to do something like that and doing it without agreement. And the kind of meds she seems to be on really zonk you out.
But I can’t put my finger on what really bothers me about the group home. Other than. I know from recent experience what has to die inside a person to live in that situation. And I can see it in people in the movie. And my stomach flips over. It doesn’t matter if it’s the only solution they have, which it seems to be. It still requires killing that part of you. Of course after five years on a psych ward that part of her is probably heavily suppressed.
And I’ve just, all the time, I end up in situations like the DD rec program from hell last summer.
And I’m a very passive person compared to average.
But I feel like these days I have this piece inside me. Like a rod.
And it’s somewhat flexible. So you push on it and it bends.
But then it snaps back at you.
That’s the piece of me that would have to break or disappear to live in a place like that. That all the good clients at the rec program, they don’t have it. And I do. I got it from freedom. I don’t want to lose it. And watching this movie terrifies that little piece of me. Because it knows what happens.
And I don’t think they know about this in the movie.
And the thing where all the siblings leave home and she’s still there and things go into chaos. And how the world now today makes this inevitable.
And between that and the group home. And understanding things the filmmakers will probably never understand.
It doesn’t have to be like this. It doesn’t.
And it just hurts. In ways that family members and staff don’t ever know.
Protest in Yonkers about the death of Corey Foster, who died of restraint in a residential facility after saying he couldn’t breathe. PLEASE spread the word
In a not too alternate universe this would be me. Several times over. I take it very seriously. Spread the word. Get there if you can. Tell others if you can’t. And if anyone says this was okay, just be glad I’m not in a room with you right now. No evidence of any wrongdoing, even with witnesses, my ass. And I’ve heard “If you can talk you can breathe” many times before… just before I stopped breathing. Fuck this culture that says its okay to abuse someone as long as they’re disabled and it’s called treatment. I’ve been at the bottom of those piles before and almost didn’t survive.
thank you for posting my son Corey Foster on your blog….on Friday May 18th 2012 we will be holding a protest in front of the Leake and watts school in Yonkers where my son was killed. This protest will be about awareness and to stop the abuse and deaths in our school. If you would like to join us the invitation is open. the address is 463 hawthorne blvd, yonkers ny. Once again thank you so much for your support and i hope to work with you in stopping the madness.
***********************
and Watts boy’s death: ‘I can’t breathe,’ boy shouts after staffers piled onto him, witness says
Apr. 19, 2012 - by Will David and James O’Rourke of lohud.com
Corey Foster, a 16-year-old resident who died Wednesday night at Leake and Watts residential treatment center, went into cardiac arrest while being restrained by staff who were trying to force him off a basketball court, according to two witnesses.
A half dozen staff piled onto Foster after he became angry, they said.“When they got off of him, he was on the ground and wasn’t responsive,” said Antonio Reeder, 17, a resident who said he saw the confrontation
Please click on the link below to read the full article.
http://www.lohud.com/article/20120419/NEWS02/304180105/Restrained-boy-who-dies-Leake-Watts-facility-Yonkers-identified-basketball-dispute-precipitated-incident
The time warp is starting.
I close my eyes and I’m still at the conference. My brain doesn’t know I’m home. I’m not comfortable yet because I’m not home yet even though I am. The moment I go dormant I get a rush of sounds and sensations and images, completely out of context and haphazard. I can feel my wheelchair being pushed. I can catch pieces of intonation and words from conversations I didn’t even notice at the time.
But the only true way out of this is through. It’s just so painful and disorienting that I typically delay a lot. Usually after it is over things are suddenly super quiet. And I have usually got drool all over my face. Sometimes I start twitching. I often temporarily lose memory of the events in question.
But I have to send this because it’s all trying to happen while I type and that’s not good.
Autistic things (TMI edition)
Not realizing until the very last second that the entire Internet meeting you are in does not want precise, detailed descriptions of what is going on in the few inches inside your rectum. But, at first, thinking that mentioning it is the same as griping about being late for your plane.
I really wish I had the ability to fully describe this right now but I used that all up in creating it. It’s a page in my communication software (Proloquo2Go) dealing with everything from polite to rude ways of dealing with people who cross various boundaries. Mostly neither polite nor very rude. But I put please in just for those few instances where I care enough to use it, I can tack it on to any other sentence on this page. I also put in the word “now” for similar purposes. I hope soon I’ll have the energy to write everything I put in there. It runs the spectrum from “Fuck off” to “Go away” to “That is hurting my brain.” A couple, like “Don’t patronize me,” aren’t written in the exact form they make when you press them, due to space limitations. I plan to add plenty more stuff when it’s not the middle of the night.
I’m hoping that having this ready will make it easier to say things like this when typing isn’t possible. Because it’s usually either impossible or highly limited when I meet people I want to say these things to.
STOP STOP STOP STOP STOP STOP STOP STOP STOP
Almost out the door of a conference. Just telling a staff person what a great contrast it was to the last big thing I went out to. (The gallery opening where all I could perceive was a sense of endlessly falling and getting slashed to pieces.) The paratransit van pulls up.
(I interrupt this story to note that weird wailing sounds are currently coming out of my mouth.)
We are turning around my manual chair to get on the van. Because I’d never make it through a day there in my power chair.
Then suddenly there is blonde hair and voice doing name query sounding thing so I hold up my name tag. Something about this woman makes me unable to type in her presence. I don’t have the presence of mind to realize what a bad sign that is. But I don’t need to because she confirms it for me within the next ten seconds.
Then she goes…. some sort of capital letters babble that seems to want something. I nod, then turn away to try to get the guy to move me to the van. Oh shit I just agreed to meet her. Oh well. Probably won’t matter anyway. I meet a lot of people. Never been a problem. Wrong again.
“Will you remember me?” I nod. “LOOK AT ME LOOK IN MY FACE” AND HER FACE IS REALLY CLOSE TO MINE AND IT FEELS LIKE SHE IS STANDING INSIDE ME. STOP STOP STOP NO GET AWAY STOP. Will nodding make her go away? Apparently not.
“Pinky swear that you’ll see me tomorrow.”
I don’t move.
“Come on, pinky swear.” Ridiculous sing-song voice. She advances towards me holding her pinky waaaaaaaay too close to me.
I start shaking my head and trying to back off.
She follows.
I know somehow that if she touches me it will do damage. Not in any thought I’m aware of. Just instinctively. I try to grab my blanket and pull it over my head but it’s caught.
I grab my iPad and hold it over my head and try to curl in on myself.
She seems determined to touch me. “High five? No? YOU SHITHEAD.”
?!???!
It actually went on longer but I’ve already blocked out large chunks of the encounter.
As they pull me into the van I hear her demanding information about when I’m coming tomorrow and insisting that she WILL meet me there.
And this changed me from worn out but feeling okay, to overloaded in a way that may prevent my attendance tomorrow. I don’t know if she was staff, a sibling, or one of those disabled people who’s taken on essentially a nondisabled identity with respect to other disabled people. But whichever, there was no excuse for any of that.
Apparently I looked so rattled going home that the driver twice tried to persuade the guy who helped me get upstairs, to ride with me next time so I wouldn’t be so uncomfortable. Nobody’s ever done that before.
I honestly don’t think most nondisabled people even notice that we get shit like this. Or that we feel this awful when we get it. Or that talking to us like we are children and like they are entitled to our response and time and crap (or we are shitheads) is wrong.
I’m not sure I’ll sleep tonight. Entirely because of her. It took me half the way home to feel like she wasn’t inside me anymore. And now my brain is just relentlessly spinning and swirling in circles. I don’t know what would have happened if I hadn’t been leaving just then. Nothing good.
And the other thing. Even if I’d wanted to pinky swear or high five, I wouldn’t have been able to. In fact, at first I thought that was why I was pulling away from her. It took awhile to reconstruct the degree of threat she felt like to… if not bodily integrity, something similar but invisible. Then I realized I was mostly reacting to that threat. But most people wouldn’t call it a threat because they don’t live in my brain.
(Now Fey has grabbed hold of my sock with at least one set of claws. My feet are in that sock. It doesn’t feel angry, just relaxed, but it hurts.)
Then after I got into the van all conversation happened around me. As in from the driver to the staff person and back. And it was weird. Because on the one hand I hate that. But on the other hand nobody was being demanding. Sometimes being invisible is better than being visible. Sometimes.
Fuck. Fuck. Was a really good day, looking forward to tomorrow, and now not sure what I’ll meet there even if I can go.
And what I hate. Is that she was probably staff or a nondisabled (or non-DD) sibling. And I’ve met staff and siblings before who openly admit that they like working with/hanging out with DD people because we are so fun and friendly and have great smiles and let them not have to behave like adults around us. And I so totally could picture her as having that attitude.
Just before this happened I was thinking about what to write about when I got home. It sure as hell wasn’t this.
[Flash 10 is required to watch video]
[Video of the heels of my hands banging together.]
My hands started doing this on the way back from the bathroom. More loud hands!
Conversations using intonation rather than words.
Friday I had an entire conversation in the elevator by grunting. It interested me because I already knew that with comprehension I could either do words and no tone, or tone and no words.
There’s a stereotype that not perceiving tone at all is the only configuration for autistic people. The reality is more like the autistic people able to talk about the matter are far more likely to be stuck in a mode where comprehending words takes priority over tone. But even Temple Grandin says that she can do words or tone but not both. My brain’s preference is tone over words, but I can switch into words over tone sometimes.
Anyway, until Friday I had very little idea that this could apply to not just understanding but also talking. I knew that when I could talk, I often had no intonation except when echoing people in certain ways. But I didn’t know (or didn’t know the extent ) that, now that I can’t talk, I can use intonation. I’ve met nonspeaking autistic people who could mimic the music of a conversation quite accurately, but I never connected it to that similar issue with language comprehension where I can only hear either words or the intonational music but not both. And I never saw this ability in myself until right after I’d done it.
The conversation basically went:
“Hi.”
(euhh)
“How are you?”
(ehh)
“That’s good.”
(ihh?)
“Well, I’m not doing too great actually…”
(uhh)
“Bye!”
(uhh!)
Another important thing: I suck at those conversations when I type. So badly that I once scored the lowest possible on a test of communication skills because it revolved around stuff like that, and “thanks” and stuff. I already knew most people grasp what I mean if I thank them by grunting. But this is the longest conversation I’ve had with a stranger by grunting and yet he understood every single thing I said.
Apparently there was a period in my early development when I grunted instead of speaking. I know I didn’t understand words back then so I wonder if I was reacting entirely to tone. Even today I have a tendency to exasperate people by grunting and gesturing in ways they can’t understand.
But what they really don’t understand is the amount of brain reorganization and cognitive pain that typing often requires. Sometimes it is so difficult that it translates into worsening any physical chronic pain I may be experiencing. So when they say “Just go get your keyboard and type it!” I sometimes growl at them and they don’t know why.
With my friends, communication is a whole different matter. Several of them have independently told me that they sometimes go between half an hour to a couple hours without realizing that I haven’t typed a single word. That is less about grunting, and more about their ability to get the basic idea of how I’m feeling or thinking, through my body language. Another thing autistic people are supposedly unable to do, but that we can often do quite well with each other. I value friendships where we can communicate well without words.
But it seems that there are total strangers who can have a basic conversation with me, and understand my “words” through intonation alone. And I can carry on conversation types that I can never do in words, as long as I stick to grunting and intonation.
And now I’d better post this because I’ve fallen asleep during every single sentence at least once, and had to edit things because if typing random letters or responding to hypnagogia.
felis corvus: Autistics and "personal space"
feliscorvus:
I don’t claim my own experience is universal, but I have a strong aversion to people I don’t know extremely well standing too close to me. It often feels like they are touching me, leaning on me, and giving me electrical-type zaps even though they’re not usually making actual physical contact. …
I get this too. And the zapping thing (and level of discomfort) happens at different distances with different people. Like there are some people that a large room is not big enough for both of us. But yeah my level of comfort with people in close proximity is much less than most people.
I don’t know if you saw the interview footage of me on CNN. But the reason I spent the entire time leaning away and looking away weren’t just “because I’m autistic and do that all the time”, they were because my stress levels were approaching “terrified prey animal” level due to how close the interviewer was sitting. If he’d stayed further away and/or been someone else, I’d have looked at least somewhat less terrified. Holy crap I never want that stress level again. Being on international TV is terrifying enough without someone sitting so close they’re almoste blending with me in unpleasant ways. (shudder) I appreciate that they took the effort to tell the entire world the lengths they went to to verify that I’m legit, but I don’t think I’m cut out for TV. It took all of my self control not to dart under a bed or something. (Of course the one time I did dart away from them, they just followed.)
Anyway I find that even when I don’t know people, the most self-contained ones are the ones who can get closest to me without discomfort on my part.
Of course I also have to put up with a lot of people getting close to me or touching me, because of needing help with personal care. Doesn’t get rid of all the discomfort. But I remember at the time I first had someone come in. And they were only coming in to cook. I was so terrified that I ran out the door and started lining sticks up on the driveway. Because at that point, simply being inside my house gave me that same level of discomfort (and I was very high strung in those days).
At the same time, while discomfort is there, I have had a hard time learning I was allowed to respond to this discomfort.
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