Saturday, December 21, 2013

Smaller



My brain is a physical organ.

There are physical differences.

There are little parts in all of our brains, and mine aren't like yours.

That's not something I'm imagining.

It's real. My struggles are real.

A physical brain difference.

It's not the same thing you do. It's not something "everyone goes through sometimes."

It's not "sometimes" at all. It's not "that's not just Aspergers, it's everyone, dear."

Frequency. Severity.

Read that again. Frequency. Severity.

It's not all in my head. It's not self-doubt. I am not selling myself short.

It's not a lack of effort.

I don't just need to try harder.

I am not a failure. I am not failing at "overcoming" my "imaginary" struggles. I cannot control it. I cannot control this disability. I can deal with it. I can cope with it.

I cope with it all day. Every day. That takes effort.

But I can not stop it from being hard. I cannot spontaneously reorganize my physical brain.

I'm not exaggerating it. I'm not hyperfocusing on it. I'm not making a big deal out of it.

If I struggle, I struggle. It's not a mountain out of a molehill. It's not a little thing that I'm making a big thing. If I say it impairs me, that's because it impairs me.

It's not the "Autism card."

If I say it's related to my Autism, that's because it is. It's not because I'm trying to "blame everything on Autism." It's because Autism causes some problems for me.

It's not admitting that "everybody makes mistakes." It's not admitting that "nobody's perfect."

Being told this every time I mention my disability means that I'm not allowed to admit that my disability affects me at all.

Because every time I do, I'll be told that I need to "own up." Be responsible for my mistakes like everyone else.

My disability may affect me in some ways, but not in this specific way right now. This specific time, it's the Autism Card. All other times, it can be real.

It is not the Autism card. It's a disabled person trying to explain what went wrong and why.

I cannot control it. I'm not imagining it. I'm not exaggerating it. I'm not making excuses.

I should not have to explain this.

You should not act like it is your duty to doubt me.

Every time I talk about my disability.

Every time. EVERY SINGLE TIME I mention that my disability causes me to struggle,

I am told that "everyone goes through that."

Or that I'm selling myself short and need to work harder to do everything everyone else does with little effort.

That I can do it if I just try.

That I need to believe in myself.

That I shouldn't make excuses.

That I shouldn't focus on my problems.

It is a disability. It is not an act.

Every time I try to talk about my struggles,

They are minimized.

My disability is minimized.

I am minimized.

Minimize = make smaller.

You make me smaller.
And smaller.
andsmaller

Wednesday, September 11, 2013

Mother tongue: Orangutans and Autistic education





This view is going to be controversial with both Cure-wing parents and Pride-wing Autistics, but I need to say it.

I do not believe in a cure (cue parents.) But I do believe in treatment (cue Autistics.) But I do not believe in calling it treatment. Nor do I believe in normalization or the ritual sacrifice of Identity. (cue confused looks from both sides.)

I do not call it treatment.





Call it education tailored to Disabled. Those like me. Teaching Disabled to care for themselves as well as they can, we can, and be as self-sufficient as possible, while not being afraid to ask for help. Not being ashamed of being just as imperfect as you, in noticeably different ways. Teaching Disabled to interact successfully with Nondisabled without asking them, us, to sacrifice our identity.

 We have this. Sort of. But it is not good enough yet. And not everyone can access it.

We need to improve our Disabled Education systems. Not just our supports (cue Autistics). Those are important. But so is personal growth. Yes. I support teaching Autistics and Disabled to learn self-care skills. I support teaching life skills. The program I'm in right now teaches those things. I want to learn them.

I've been told I shouldn't. I've been told I can't. I've been told I don't need to.

Our systems are not perfect. They need improvement. That's why I speak out. That's why I write.





Not all education is tailored to Autistics or Disabled. Yes, some of us can learn and thrive in those environments. Yes, we also fall through the cracks. Yes, mainstream education should be available to everyone. Yes. I was mostly mainstreamed. Yes, I made it. But why not have education just for us? We're different. We don't need to be shoved into a mold that doesn't fit. Not all mainstream education is going to work for us.





Some people take the idea of Special Ed for granted, as though it's something we're forced into and need to break free from.

I had to fight to get into Sped. I had to be a serious self-advocate. I've almost been tricked several times into agreeing to less than I needed. I'm overestimated. I'm patted on the head and told to run along and be my eloquent, charismatic self. I have had to claw my way into Special Ed just as violently as some people have had to claw their way out.

I'm not asking anyone to blend in or conform. I'm not saying "fake it." But speak two languages. Speak the language that's most comfortable for you: Aut. Your own voice, your own way of communicating. Be proud of it. Understand it in others.





When you move to another country, it's useful to learn the language that's spoken there. We live in Typicaland. I have spent years learning their language, learning to communicate with them - to make NT friends even though NT is not my mother tongue. To avoid: miscommunication, hurt feelings, misunderstandings - that are nobody's fault. The mere result of a language barrier. To understand NT conversations, so I don't feel like I'm standing in the middle of a group of people who are speaking Martian Trade Pidgin.

Yes. They need to learn to speak Aut. And they're trying. We're helping them. Baby steps. Training wheels. They're getting it, slowly. But why should it be just them? It's 50-50. We work. They work. We can become a bilingual planet.

I am a successful (quasi-successful), bilingual Autistic.

You say: Parents say: People say: "Words. Those words. Why words? Why wouldn't we call this treatment or therapy? Isn't it treating Autism?"

No. It is teaching Autistics. It is Autism-centered or Disability-centered education. It is education for those whose needs are different from the norm. The word Treatment is stigmatizing. It is pathologizing. You treat cancer. You treat AIDS. You treat sprains. You do not treat me. Not unless I am sick. You do not treat me for being who I am. You do not treat my personality. You teach me.





I want to be taught.

I am afraid.

I don't want to set my house on fire because I forgot I was cooking.

I don't want to get run over. I don't want to be drained of finances. I don't want to be locked in a basement or raped or kicked out of my home.

I don't want to miss half of a conversation because it is all subtext.





I don't want to make a constant fool of myself for misinterpreting someone else's culture. ND (nondisabled) culture. I don't want to embarrass myself over a linguistic error. In Japanese, you can accidentally call a young girl an orangutan by a simple change in the length of a vowel.

Sometimes I feel like I'm "calling a young girl an orangutan" when I talk to NDs. I don't want to. I don't want to say something innocent in my language that has a ridiculous, or even offensive, meaning in the ND tongue. Among my own People, it might pass. But among NDs, it's lost in translation.

I have come a long way. I have learned a lot. I have done most of this on my own.

I have trouble with sensory processing. Lots of Autistics do. They have programs for that. Auditory Processing Therapy. Sensory Integration Therapy. But don't call them that. Call them Sensory Integration and Auditory Processing Training.

Semantics? Maybe. But semantics can be important. The words we use both reflect and reinforce how we view the subject. Treatment = disease = broken. Therapy = pathology = needs fixed. These words come from people who think that I am a disorder, and they make people think that I am a disorder, and those people use words that make people think that I am a disorder. It is a snake eating its own tail.

I am not broken. I am not a disorder. I do not need fixed.

I need to be taught. Teach me.

I am your child. I am your student. I am your daughter.

Teach me.

Monday, August 19, 2013

Too shocked to cry

This letter.

This letter right here.

Sent to the grandmother of an Autistic teen.

The sort of severe ableism that needs to be discussed before it gets out of control.

The sort of terrifying bigotry that can make me fear for my safety.

The sort of thing I didn't think existed anymore.

I'm too shocked to cry.

I don't even know what to say to this...

I feel sick...

So I will quote Autistic Hoya.

"If we can't conform, if we can't pass, if we can't adhere to compliance as ethics, if we can't become invisible...


We should die. "




Police have been contacted and are investigating.

Don't do this

My friends mean well.

Yesterday was pool day. An outing. Fun.

When we got there, I swam alone.

I always swim alone.

The pool is overwhelming.

I practiced my dolphin kick. Practicing to swim in a mermaid tail. I pretended I was a children's performer, coming out of the water to wave and pretending I didn't need to come up for air. I imagined myself swimming in a tank. I practiced sitting in the shallow lip of the pool, testing to see if there was room for a mermaid tail.

And then I was done. I didn't swim for more than a half hour or an hour. I was in-and-out of the pool. I didn't want to force myself to swim longer just so I could look like I was having fun at the pool. Like everyone else. I didn't stay in the water to avoid well-intentioned questions, only to pay for it later with exhaustion.

I was done.

Pressure to look normal.

Pressure to be social.

Pressure to have "fun."

I was trying to self-regulate. I was calculating my "spoons." I had a friend coming over later; I wanted to save some spoons for that. I didn't want to wear myself down.

I walked around the pool for fifteen minutes, talking to myself, up on my toes, hopping, stimming, "dancing." I walked until I was dry.





My friends meant well.

They wanted to "rescue" me from boredom.

They waved me over to the water. I shook my head politely.

Pressure.

They begged. They bartered. They pleaded. They haggled.

We could just swim in the shallow end.

We could just sit on the steps.

I tried to say it politely: I'm done. All done. I signed it: [done]. No, thank you. I'm already dry.

That's why you need to get wet!

I don't want to get wet.

We can just go sit in the kiddy pool.

Well, okay... that was okay. I guess. It was quiet; there were almost no people; it was far away from the commotion of the main pool; it was shallow; there was shade; and we could just sit. I wanted to be a good friend. They wanted me to be in the water. Good friends make their friends happy.

Social conditioning.

She got in the water and swam around at our feet. She splashed me.

She splashed me. I was already dry. She splashed me.

I cringed. I didn't say anything. Good friends don't complain. She didn't do it on purpose. Good friends don't say anything. That's making a scene. Good friends don't make a scene.

My bottom hurt from the hot concrete, and the grainy dirt and rocks, and the little dimples in the cement.

"Let's go get in the pool."

No, thank you.

They begged.

No, I'm done. No, I'm done. All done. Too many people.

"Pleeeeease? We can go in the deep end you can practice your dolphin kick. Look, there's hardly any people there."

No. Too many people. Too loud. Too much. Too much going on over there.

They begged. They pleaded. They bartered. They haggled.

No.

I got up and walked away.

I did not feel good.

My legs were wet. They were itchy. They were wet.

Wet.

I walked around the pool. I did not dance. I trudged. On my toes, but I trudged. Exhaustion.

I spent the rest of the afternoon sitting behind a chair, under a towel, singing, rocking, and making cat noises. Meowing.

And then I had to keep it together for three hours of friendship at home.

Don't do this to your Autistic friend.

Wednesday, June 5, 2013

No room. Too much.


Landon Bryc, author of the Ausome blog, ThAutcast, recently created this image:

"I'm sorry. I just don't have room for you in my head right now."


I wish I could say I understand what the Aut in this photo is saying, but...

I never really find myself saying this. It's always "too much, too much! Stop! Too much."



But... I'm never this eloquent about it.



I wish I could say "I just don't have room for you in my head right now..."

But... I don't always know when I don't have room for anyone in my head until it's too late.


  • I don't know when to say goodbye. I hate to say goodbye. I don't want the fun to end.



I ask friends to stay an extra night, I hang around without going home, and then suddenly I get tired and bitchy and cranky, but I don't want to go. I drain myself trying to be with the people I love. I just don't know when I just can't handle any more. I always end up running myself down.


I might be wearing my friends, or myself, out. But I don't know it. Even a day at the park, or a shopping expedition, might be too much. But I don't know it.


  • I just don't know when I just can't handle anymore.



  • I always end up running myself down.




Running.

Running.

Running...

Whrrr...

Run-down robot. Whrrr...




    I run myself down.






           -Kitt

Friday, April 5, 2013

The Lies


Want to read about autism? Read "Loud Hands: Autistic People Speaking," or "I Love Being My Own Autistic Self."
      ・Don't read anything by Jenny McCarthy.

Want to help Autistic people? Donate to ASAN.
      ・Do not donate to Auti$m $peaks.

Want to know about autism? Ask Amy Sequenzia, Karla Fisher, Carly Fleischmann, Ari Ne'eman, Landon Bryce, or any Autistic person you know.
      ・Do not ask the media.

Are you interested in hearing the truth about autism? Then listen to us.
      ・Do not listen to the lies.

Sunday, March 17, 2013

Imagine this...

Imagine this: you are a constant target for hatred, and you are vulnerable, and it's not your fault at all.

Imagine that the government has the power to control how much money you make. So if the government spends too much, they might decide to cut your budget to just below what you can live on.

Imagine that your cultural identity was constantly used against you, and you weren't allowed to be bothered by it.

Imagine that your family could decide at any moment that they were tired of you, and send you to live in a home where you were likely to have your opinions dismissed, have every aspect of your life controlled by other people, be physically and sexually abused, or be drugged into placid compliance. And nobody would bat an eyelash. Nobody would speak out, even if they knew what was going on. The government and local authorities just looked the other way.

Imagine that based on your skills and deficits, or your personality, people complained all the time about you being allowed to work - even though you were good at your job and hadn't done anything wrong. And imagine that these people could actually decide that you had to work in a separate environment if it came to that.

Imagine that people tried to keep you or your children out of their schools and classrooms.

Imagine that every time you ate out, without fail, random strangers would offer dirty looks and snide comments. saying things like, "Those kind of people should be kept away, locked up, not be allowed in public."

If someone wanted you to be stuck at home for the day, or forever, or be locked in a closet, it would be really easy for them to do so. If everyone around you seemed to move faster, or speak more quickly, or allude to things you didn't understand at all - and they used these skills to trick you and manipulate you.

Maybe when you asked to be allowed on an airplane or a bus, people acted like you were being ridiculous, or called you a crybaby, or gave you ridiculous solutions that weren't even really solutions, like, "How far is it on foot?" or "Can't you just drive?" when they were neither driving nor walking themselves. People also constantly assumed that you had no dignity or privacy.

What if you were never taken seriously? What if you and your people were continuously abused, taken advantage of, exploited, and marginalized? The people you depended on could use your dependence against you, and you couldn't escape? What if someone took away your legs and locked you in your room? Imagine if people were offended by you just existing.

Imagine that out of all the people who made all of the decisions about your life - your income, your right to work in a mainstream setting, your right to education - none of them were really like you, or understood you. They didn't know anything about your people. They didn't even try. And everyone thought it was okay for you to constantly be at the mercy of people who didn't understand your culture. Imagine that everyone else held power over you.

What if this was your life?

You would protest. You would start a riot. You would move to Canada!

This is my life. I live my life knowing - expecting - that others will use slurs based on my identity as a disabled person, and I am supposed to be okay with that. That people will give me strange looks, or make snide comments, and I am not allowed to make a fuss. Somehow, I'm supposed to think I deserve it. Retards can't complain. Cripples can't pitch a fit. After all, they are letting us live here, right? Isn't that enough?

If my care provider (my mom, in this case) decided that she didn't want me around anymore, I would have no place to go, no job - no adaptive skills, which means job skills and life skills. This includes kitchen safety, cleanliness, hygiene, emotional management, not accidentally walking into oncoming traffic, not being financially abused, not being raped, and filling out applications, paperwork, rent stuff, tax stuff, job stuff, and whatever else I need.

I also would have no services for my disability. Why? Because according to the government, I'm not disabled enough. Oh, sure, I qualify for developmental disability services. But a person with a high IQ can't possibly have low adaptive skills, of course, so I don't qualify for SSI. And if you don't have SSI, guess what? You aren't allowed access to voc rehab (job skills), full access (care providers, life skills training, other services) and you're not allowed to move into a group home. Can't manage your own apartment? Oh, well, burn it down, then. Kitchen safety is overrated. You know, fire, pestilence, crap like that, not our problem. Can't keep a job? Oh, sucks to be you. Yeah, wish there was something we could do, but unfortunately... you don't qualify. The good news is, guess with no job, you can't pay for the apartment that you can't live in on your own. Whew! What a relief! Now you can live in squalor on the streets for free, instead of in a four-story building where you have to pay rent. We'd let you move into a group home, but, you know... you don't qualify.

There is no way around that for me. Leaving home = living hell.

Oh, they're also trying to rush me out of special ed. Darn us almost-disabled-but-not-quite-disabled-enough people who can talk and brush our own teeth, stealing all that government money. There's some law that I have to get all my credits within the first year if I want my standard (regular ed) diploma - and since they didn't really give me much in the way of transition services before graduation, I have... drumroll please.... diddly-squat life skills. Woohoo!

I guess I could just keep my modified (special ed) diploma. Then I would get all three years of transition services. Oh, but wait... that's right. If you only have a modified diploma, you can't apply for FASFA. Can't afford to go to college? Oh, well, you took the "special" route. No college for you, I guess. Also, some jobs won't hire someone who has only a modified diploma - such as crossing guard. Can't be a crossing guard if you're a speddy. My choice is diploma now, no transition; or diploma never, no opportunities. It's either live independently, or get my degree. It's either my future, or my future.

This is daily life for me. Power. Nondisabled people making decisions about the most important aspects of my life. Power vs. vulnerability. Me, having no options. Lacking equality.

Ability privilege - all the perks of being nondisabled.


This was, and is, life for the basement of horror survivors- locked in a basement dungeon, kept in attics, chained to boilers, defecating in a coffee can, naked, beaten, tortured and burned, with someone else keeping them in circumstances most people wouldn't keep animals in, so that they could steal their money. Unable to protest or escape because of their disabilities. Unable to have prevented being taken advantage of in the first place, because of their disabilities. Next time you feel like complaining about our government checks, or our jobs, or our education, or our existence, consider the obstacles that we face constantly, things that probably never even occurred to you.

Yes. We spend every day contending with power imbalance. Our lives are at the mercy of nondisabled people's opinions of us.

Imagine that.

Sunday, March 3, 2013

What do you want?


So here's what just happened. Yes, That Too started a flash blog snowstorm to protest the fact that the autocomplete options were "die" "be killed" etc, when you search "autistic people should." Guess what? Google reduced the frequency. It's great that they did that, seriously. It's super great.

What's not super great is that Autism Speaks chose to make a big deal out of Google changing the terms... but chose not to make a big deal out of the AUTISTIC-led movement that led to the change.

Autistics organized this thing. They ran this thing. They pulled it all the way through. You'd think someone looking for the best interests of Autistics would be all over that. Autistics speaking for themselves, empowering themselves, advocating for themselves. Isn't that what Autism Speaks claims to want?

 "We just want the best for our kids," they say. But will you want the best for them when they're thirty years old and blogging for their rights? Or will you want them in the palm of your hand?

"Tip your hats to Google, sure, but also to the ones who told Google so.
Tip your hats to those who kept at it when Google said it was unfortunate, but that nothing will be done." -Yes, That Too.

That wasn't the only snowstorm. Oh, yes, there's still a snowstorm. "Autistic People Are." Add your voice to the flurry.

Do you want to be heard?

Do you want to be erased from your own history books?

Copy the link here. Leave a comment. Write a blog post. A Facebook status. Make your voice heard. Tell Autism Speaks that you are here, you are not going away, and you will be heard.

 https://www.facebook.com/autismspeaks/posts/191178214339598?comment_id=452626&offset=0&total_comments=133


-Kitt

Tuesday, February 5, 2013

The strain of functioning


Sometimes I miss school because my body has to physically recuperate from an emotional event.


When I go shopping, I am sitting on the floor of the aisle after three or four stores. Dragging myself like a zombie instead of walking.


Sometimes I fall asleep at other people's houses.


Even socializing can wear me out. I crave it, but I just can't handle it. I get tired, crabby, pissy.


When I have a bad day at school, I go home and take a nap.


Sometimes I work myself up to a crescendo of exuberance and talkativeness and happiness and excitement, and then I crash.


Too much processing and reacting appropriately drains me. Wears me out. Exhausts me.


My body requires about twelve hours of sleep, although I never get that much. Ever. I think the reason I need so much sleep is because of the strain of functioning on my body and mental abilities. So I'm always tired.


When I get too exhausted, sometimes all I can do is scream and cry. Literally.


And that wears me out even more.


Functioning labels don't do much for me, and my friend Amy has expressed how she resents being labeled "low-functioning." But I don't know how else to say this. It takes a tremendous amount of effort for me to be "high-functioning." Sometimes all that processing and functioning takes its toll. And then I can't function at all.


This happens to people on other parts of the spectrum. Nonspeaking autistics or those who need lots of support, too. Just processing things and making sense of them can be a huge task.


Functioning my way is a strain. Functioning their way is a strain, too.


I meant to spend the weekend recuperating from the last two weeks, which have been emotionally and physically exhausting. That didn't happen. I was out and about all weekend. If I keep going like this, I'm going to crash.



Do you wonder why I miss so much school? Do you wonder why I scream and cry instead of just telling you what's wrong? Do you think it's odd that just being happy with people can suddenly wear me out? Do you think I don't look autistic? Do you know how hard it is on my body, just to be me? Just to function every day?

Wednesday, January 16, 2013

The so-called "benefits" of ECT

The joys of shock therapy. Pain, subjugation... and "progress?"

Amy Lutz seems to think so.You see, she put her autistic child Jonah through shock therapy, and it really "worked" on him. All his problem behaviors? Gone. Just listen to her dazzling testimony:
"In March 2010, we decided to try ECT because we knew it had been used successfully at Kennedy Krieger on kids with dangerous behaviors who hadn’t responded to medication. Less than a month later, Jonah’s aggression was almost completely gone. Gone. And ECT stopped his rages without any of the personality changes or cognitive impairments you’ve heard a lot about during this hearing. Quite the opposite. According to Jonah’s school data, before ECT, he acquired an average of seven new skills per month. In December 2010, he acquired 52 new skills."

So they terrified and tortured him into responding. The same technique can be used to get information out of a soldier. But if someone was using this technique on our soldiers, there would be outrage all across the country about those bad people who were hurting our soldiers. So where's the outrage over this so-called therapy being used on autistic people? Oh, wait, that's right, I forgot. We're not people, we're behavior problems. We can't be emotionally damaged, because we don't have emotions, much less understand anything that's being done to us. So shock therapy doesn't really hurt us. It just trains us to respond - the way torture trains the subject of an interrogation to respond.

 Do what they want, and they won't hurt you anymore.  

Beneficial for both the autist and his family. How silly of me to forget that.