Being an Unperson

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Being an unperson is being treated as unable to make decisions. Unable to have opinions. Unable to want things.

Being an unperson is having people try to fix you. Having people try to make you human and whole.

Being an unperson is having people talk to a stereotype instead of you. It’s having people talk to your autism, or your depression or your Sad Feelings instead of you.

Being an unperson is people being convinced you have no internal motivation, and they must construct it for you, out of gummy bears and M and Ms.

Being an unperson is being treated as a problem to be fixed, behaviors to be modified, someone else’s woeful burden, someone else’s grand accomplishment.

Being an unperson is saying “I feel like this” and being told that no, you don’t.

Being an unperson is having no one look at you. Or having everyone stare at you as if you can’t see them.

Being an unperson is when people treat your life as a horror movie. When they say “imagine being this person” to make people cry and give them money.

Being an unperson is when you must learn to take perspective but you don’t have a perspective to take. When you must learn not to make others uncomfortable and to expand your comfort zone. When you are hurting people’s feelings by acting like you have feelings to hurt.

Being an unperson is having people ask the person next to you what you want to do.

Being an unperson is telling people about this, and instead of saying, “That’s awful. We should change that,” people say, “I never saw that happen.” People say, “No one saw that happen.” (It doesn’t count that you saw it happen; you are not a person.)

On Nancy Fitzmaurice

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They’re killing us.

And I just wonder who’s next.

They talk about low quality of life. And when they talk about quality of life, they’re talking about value of life. As if you could measure the value of a life. You can’t.

They talk about quality of life. As if death was somehow better. As if you have to earn being alive by being happy enough. Maybe that’s why they train us to smile and smile and smile until we don’t know how not to.

As if there were only so many spaces on earth and we were using up one that could be filled by a real person.

They lock us up and they say we are grateful and they strip us of everything and they say we are grateful and then they kill us, and they say we are grateful.

And it’s terrifying, how many people think it’s okay. You’re telling me not to judge this killing; do you want me not to judge you when you kill? Are you not judging because you are doing as you hope you will be done by?

They’re killing us. The doctors. The ones that are supposed to be keeping us alive, are killing us.

They kill us by pinning us to the floor and calling it help, and locking us in places where we don’t have our basic needs met and calling it help, and shooting us and calling it help, and taking away our food and water and starving us to death and calling it help. Because the value of our life is negative and we are not allowed to exist.

Another one down.

Tell me, who’s next?

Selective Mutism and “Sorta Verbal”

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I have access to speech at least 85% of the time, but that doesn’t mean that during those times I am as verbal as a person without autism. Here are some examples of having access to speech while having speech trouble:

I have access to automatic speech, but not conscious speech.

For example I might see a dog and say, “Puppy!”, but by the time I’ve gone through I want to pat the dog, to pat the dog you have to ask the owner, the owner is over there, I should say please, I want to say to the person over there “Can I pet your dog please?” I can’t figure out how to get the words to come out of my mouth.

I have access to prompted speech, but not unprompted speech.

For example, if you ask me what book I am reading, I might be able to tell you it’s Bridge to Terabithia, and it’s good, but if I see you sitting across the room and want to tell you what I’m reading about I will not be able to initiate the conversation.

I have access to planned out speech, but not spontaneous speech.

I have to memorize what I’m going to say and how my mouth is going to move to say it, before I say it.

I have access to speech but it’s mentally exhausting. 

OR

I have access to speech but it’s physically exhausting.

OR

I have access to speech but it’s physically painful.

OR

I have access to speech but I have to attempt talking many times before the words actually come out of my mouth.

I have access to speech, but only scripted speech.

This can be because I don’t have access to new words, or because I don’t have time to create new words and log them and run them through filters (not even necessarily filters of “is this polite” but filters of “is this actually true”- it’s like checking your work in math) while carrying on a conversation, or because other people’s words are more comfortable then my own.

Most of what I say is a patchwork quilt of scripts pulled out of the scrap bag of my brain and hemmed together.

Scripted speech isn’t necessarily bad or noncommunicative, and there are different levels of scriptedness from “kneejerk response” (“How are you? Fine”) to “looking for scripts that fit what I’m trying to say and splicing them together”. (I sometimes create scripts in advance specially for specific conversations with specific people. That is definitely not noncommunicative.)

I have access to speech, but not the words I want to say.

“Make no because the thing is curtaining” I say, unable to do grammar entirely, hoping someone will turn off the light. When I looked for pictures of light in my brain, I found a picture of light filtering through curtains, and “make no” means “make not exist”. Communicative, but damn hard to understand.

A side note: it is cruel to make someone in this state use proper grammar or polite phrasing before you acknowledge what they have said.

I have access to speech, but not communication.

This can contain some or none of things above, and it’s hard to talk well about. What I can say is:

-A lot of it was taught to me by therapy

-For a long time, and still now sometimes, people labled uncommunication as real communication and real communication as uncommunication

-Just because someone does things that look communicative that aren’t, doesn’t mean they don’t do things that are communicative, and doesn’t mean you shouldn’t try to figure out how they communicate, and listen.

They would have told you

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tw: special ed, abuse 

If you had asked my parents, they would have told you that they were aware of the problems with behavioral therapy. That they knew about the abuse in special ed programs. That my therapists were different, my school was great, and my therapy was fine.

They would have told you they worked hard to get me services, which they did. They would have told you they refused to let the school district send me to a place with padded rooms, which they did. They would have told you they researched for hours, spent thousands of dollars, and called in lawyers, which they did.

They would have told you that I smiled at the therapists, which I did, hugged them, which I did, said they were nice and had helped me so much and I loved them, which I did. They wouldn’t have told you that I cried and refused to go to school so that they threatened and screamed and restrained me and dragged me onto the bus, they wouldn’t have told you that I asked if the other kids were scared of the therapists, they wouldn’t have told you that when I was restrained I shouted that it hurt and I couldn’t breathe, they wouldn’t tell you that when they dragged me to school I said, “I’m Carla. Abby is at home.”, they wouldn’t have told you that I said I wished I were dead.

My parents would have told you restraint was a last resort and then come home to pin me for throwing a pen. They would have told you the holds they used were so safe they were barely effective, and then gone home and left me with bruises and put me in positions that made me pass out. They would have told you they loved me, which they did, and they wanted good things for me, which they did, and they had my best interests at heart, which they did at least some of the time. I have learned that some types of love make you shake and give you nightmares.

If you had asked me if I liked therapy, I would have said yes. If you had asked me if anyone was hurting me, I would have said no. I would have said my mom was the best mom in the world and my dad was the best dad and my therapists were the best therapists and I didn’t know where I would be without all of them.

If I had confessed to you my fear or my pain, it would have been disguised as an outburst. I would have wanted it to be an outburst. I didn’t want to be taken seriously. I desperately wanted to be a sick, angry liar who had never been hurt and had nothing to be scared of. If I had told you what had happened to me, I would have apologized and taken it back. My parents would have forgiven me for my sick, angry lies until we were alone.

If you asked me, now, if I liked therapy, if I loved my parents, if anyone had hurt me, I would weigh my options. If you asked me in person about the school I went to, I would weigh my options. If you talked about how wonderful my parents were, I would smile and nod. I would talk about making pancakes together, going to plays, the lawyers. I would smile. I would smile. I would smile.

Everyone said my therapy wasn’t like the other, bad, therapy, and I believed it. Every bad thing had a good, good reason. Everyone said I wanted this until I began to believe it. I had never objected. It was my brokeness objecting. It was my illness objecting, my illness crying, my illness having nightmares, and I wanted to be well. I wouldn’t hurt if not for my illness; my illness screamed at me, my illness wrote therapy goals, my illness pinned me to the floor.

I wanted to die, I was scared for my life, I thought I was broken and lesser and wrong, but I wanted to get better, so I smiled.

I am not a shiny aspie

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people really wanted me to be high-functioning. they wanted me to be a computer-brained savant. they wanted me to be a shiny aspie.

my problems were social skills. anxiety. defiance. my problems were being literal and rigid and black and white thinking. oh, and maybe sensory overload sometimes.

I’m not saying I had none of those problems, I’m saying…

I had language comprehension issues. I didn’t understand what people were saying to me so I gave answers that made no sense. this was a lack of social skills. this was caused by anxiety. this was because I was rigid and literal. this was defiance.

I had information processing problems. combined with the language comprehension issues, that meant I often had no idea what the hell was going on. people said sounds that were hard to translate into words that were hard to translate into meaning. I could not tell who was saying what. I might realize something had happened minutes after it had happened. I lost track of abstract concepts- I knew I was in a “school”, but I had lost track of what a “school” was and why I was there. I burst into tears. I had anxiety problems. or maybe I didn’t like being told what to do. maybe I didn’t like transitions because I was so rigid thinking (I didn’t like transitions because just when I had gotten some grip on what was happening and what I was supposed to be doing, people pulled both of those things right out from under my feet).

I had movement problems. I had inertia and catatonia. I had trouble locating myself in space. I couldn’t always get myself to move where or when I wanted to. this was, usually, anxiety if it happened at school, defiance at home.

sensory overload was sometimes correctly identified, but often labeled anxiety or behavioral issues.

I could go on.

I’m not high functioning. I don’t think I’m low functioning either. or middle functioning. I don’t like functioning labels. and I have uneven skills such that I’m very good and very bad at the same thing. and I have fluctuating skills such that if I gave myself a functioning label, it would change constantly.

but I’m not naturally computer-brained. people saw that when it wasn’t there. and people taught me that. and I built some of that myself, became very specific trying to translate things from a different kind of specificity, a kind of specificity that was more specific the way the smell of tomatoes and rain is specific, less specific the way computers are.

I am not a shiny aspie. and I never was.

Anything you say can be used against you

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tw: “therapeutic” abuse of neurodivergent people

When you are mentally ill, when you are autistic, anything you say can and will be used against you.

People will ask you whether you feel bad when people laugh at you, and if you say no you will be sent to social skills class, and if you say yes you will be sent to therapy for self esteem, where people try to guilt and hurt you into thinking highly of yourself.

People will ask you if you consider your illness to be disrupting your life, and if you say yes it will be used as evidence that you need behavioral therapy, and if you say no it will be used as evidence that you have no insight.

People will tell you you will grow up to be unemployable, and say you’ve given up on yourself when you agree with them. People will tell you no one likes kids who act the way you do, and when you say no one likes you, faux-nice ladies will put you on antidepressants and lecture you on how everyone is friends in this school. People will lecture you on not giving in to peer pressure and on learning to “act socially appropriate”.

If you disagree with them, you will be punished, but the opinions they actually agree with (you are Bad, you are a burden, you are unworthy) they do not want to say.

If you tell them about what brings you joy, they will invade it and contaminate it and put it through a cookie cutter and make you earn it. If you tell them about what brings you pain, they will write it down and use it as punishment and put you in therapy to make you tolerate it and call you faking and grievously ill at the same time.

And the right to remain silent? We don’t have that. “Use your words” they say, and twist our arms behind our back, and hold jellybeans in front of our mouths and call us empty shells and call us regressive and lock us up and force us to speak.

Functioning labels are bullshit

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Let’s take two girls with autism.

Trisha is an articulate and eloquent writer. She has autism, but that hasn’t kept her from presenting and preforming for large audiences. Her teachers have described her as introverted, bookish, gifted, and eager-to-please. She has multiple friends, she can take a train across the city independentally, and her mother thinks nothing of leaving her home alone with her younger brother.

Kailey cannot bathe herself and has trouble with dressing, eating and most activities of daily living. She spends hours engaging in self-stimulatory behavior and she routinely self-injures to the point of bloody sores. She has meltdowns in which she hits herself, bashes her head into walls, and destroys things; medication cannot control them. She has limited verbal ability and a wandering problem that has led to her almost walking into cars. She cannot function in a normal school.

Which of these people sounds “low functioning” and which sounds “high functioning”?

Guess what? They are both me.

Bragging about mental illness

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I want to talk about solidarity. I want to talk about crazy people making crazy jokes. I want to talk about *bragging about mental illness* and renouncing shame and omg I’m on more pills than you. I want to talk about bragging about mental illness and bragging about bad grades and bragging about detentions and how a kid can study like fucking hell and then brag about their D when they get it, I want to talk about how it makes these things less awkward, I want to talk about how the default is shame and shame is useless and sometimes you have to choose between seeming ashamed or defensive or like you are bragging because the world won’t let you be neutral, I want to talk about how bragging about mental illness is reclaiming shame, reclaiming the thing in your brain, reclaiming silence, reclaiming sickness from everyone who said you were worthless and crazy and broken and in need of rescuing, I want to talk about me and my friend in the special school talking about how we were glad we were crazy, I want to talk about *bragging about mental illness* and how I am so fucking proud that I exist as a mentally ill person when the world wants me not to, we get bragging rights, I want to talk about *bragging about mental illness*  and how I could never say those words with disgust.

Time

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Time has always moved funny.
Too fast and too slow, puckering in, in all directions at once.
I think this is an autism thing, and a bipolar thing, and a PTSD thing. I think this is a “I cannot exist in spacetime if I do not exist” thing. I think this is a “always in the moment before death” thing. I think this is an “attentional issues” thing.
Time has more mothholes when I’m crazy.
Feeling like time is some weird mobius strip made out of a melted mirror makes it hard for me to put together a coherent life story.
Time stretches out and snaps in like a slinky. Time does that thing middle aged people talk about, where a week is gone in the flap of a wing. Sometimes I am restless for this to happen. My goal is survival, so life is an eating contest of days:
how many can I fit in my mouth at once?

“Violent Behavior”

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They never call restraint “violent behavior”.
They call flicking a paper clip “violent behavior”. They call snapping a pencil “violent behavior”.
They don’t call throwing a kid to the floor “violent”.
Our breaking is less important than that of a pencil.
Because, you cannot hurt an unperson. You cannot be violent to someone who doesn’t exist.
Because, when you are crazy, autistic, disabled, to exist in space is violent. To exist in space becomes an act of war.