Allow me my rage a moment. If you can't handle a disclaimer free post in which I tell you that my rage doesn't apply to you, if you need handholding and cuddles, go find a different post. This one is not for you.
I fucking hate autism parents, I fucking hate autism professionals, and I fucking hate every media outlet that provides them a platform for their dehumanizing tales of self-pity and woe.
I don't give a flying fuck how different your kid is from what you wanted. The kid you have didn't steal your dreambaby in the night to make you miserable. The kid you have is yours, a real person, not just a pile of deficits and fuel for your cries of poor me.
Your moaning and dehumanizing has consequences. Your pity parties legitimize murder, forfuckssake. Every time you people go tell a reporter that your child is a curse, you totes understand why people snap and murder their autistic family members, you are adding to a culture that devalues our lives and denies our humanity. You are contributing to a society where you are a martyr when you kill one of us.
In what universe is that acceptable?
And shame-no, I need a stronger word but I do not know one-shame on each and every reporter who pitches a pity and woe story, shame on every editor that salivates over it, and shame on every godsdamned news outlet that publishes it. You fuckers are partially culpable in every murder of an autistic since "autism" was a word people know. You fuckers are the reasons that our dead never see justice. You are fucking scum. You spread horror and despondency about our lives, and you make our murderers out to be the good guys. People are not supposed to sympathize with murderers! You are sacks of shit because you convince them to go against thousands of years of evolution and do so. You convince them that empathizing with our killers is the right thing to do. How do you fuckers even live with yourselves?
You are why I am so angry. If you people, people who have a responsibility to us and to accuracy, cannot even manage to not paint us as less-than, cannot manage to scrape together enough collective decency to say "that shit is not ok" when one of us is murdered, what the fuck can I expect from the rest of the world? If you are going to glorify our abusers and murderers, the only healthy response for me is wrath. I have to be angry, enraged, because you won't do it. My people are being slaughtered. Anger and hate is how people are supposed to respond to that.
I hate because my wrath and disgust is long overdue, and nowhere near as strong as you deserve.
Showing posts with label profane. Show all posts
Showing posts with label profane. Show all posts
Tuesday, March 13, 2012
Sunday, December 25, 2011
The Happy Family Meme, Holidays, & Why I Hate December.
I'm pretty convinced the people who push all of these "-insert holiday here- is for families!" ideas have never read the news. Ever.
Newsflash for you people: Some people's families SUCK.
So you make all these days (mostly Christian-chosen holidays, which is a whole other issue) days that what you can do is be with those abusive assholes who you haven't seen since they told you to get a real job or die on the street when you were a teenager, or you can be alone hearing all about how Xmas is all wonderful and yay family who love you and are awesome no matter what.
And to that I say, fuck you.
There are all sorts of myths already about people who have shit-awful families. Didn't you know? It's my fault my parents are abusive. Obviously people from dysfunctional families are unable to love or care or whatever; never trust someone who has no contact with their family because no reason is good enough to justify that because family is family. Someone who has no contact with their family, even if their family is abusive and toxic, is all sorts of indescribable awful. That is the meme. We all are just spiteful and horrible because, don't'cha know, families always are there for each other and love each other. No exceptions.
And to that I say, go fuck yourself. If you want them so badly, you take them.
Then you throw holidays in there. Go spend time with your family, you say. All families love each other, holidays are for family, forgive/forget, I slap your face off and you're still going.
Because our culture refuses to admit that some people are related to shitstains, a holiday is a day where your only choices are:
a) go be abused
b) sit at home hearing how you should be with your family.
Because I don't feel bad enough already about being told I'm subhuman for avoiding those people, I also need to have no options for doing stuff today. It's like society at large is trying to bore & shame me into forgetting that I have parentally-induced dents in my skull.
And I know I am not the only person in this position. It isn't a moral failure to hate your family or hate holidays. You can't really have one without the other very easily, and if you really think it's a moral failure to not like having parentally induced dents in my skull & other PTSDy memories, go fuck yourself.
K
Newsflash for you people: Some people's families SUCK.
So you make all these days (mostly Christian-chosen holidays, which is a whole other issue) days that what you can do is be with those abusive assholes who you haven't seen since they told you to get a real job or die on the street when you were a teenager, or you can be alone hearing all about how Xmas is all wonderful and yay family who love you and are awesome no matter what.
And to that I say, fuck you.
There are all sorts of myths already about people who have shit-awful families. Didn't you know? It's my fault my parents are abusive. Obviously people from dysfunctional families are unable to love or care or whatever; never trust someone who has no contact with their family because no reason is good enough to justify that because family is family. Someone who has no contact with their family, even if their family is abusive and toxic, is all sorts of indescribable awful. That is the meme. We all are just spiteful and horrible because, don't'cha know, families always are there for each other and love each other. No exceptions.
And to that I say, go fuck yourself. If you want them so badly, you take them.
Then you throw holidays in there. Go spend time with your family, you say. All families love each other, holidays are for family, forgive/forget, I slap your face off and you're still going.
Because our culture refuses to admit that some people are related to shitstains, a holiday is a day where your only choices are:
a) go be abused
b) sit at home hearing how you should be with your family.
Because I don't feel bad enough already about being told I'm subhuman for avoiding those people, I also need to have no options for doing stuff today. It's like society at large is trying to bore & shame me into forgetting that I have parentally-induced dents in my skull.
And I know I am not the only person in this position. It isn't a moral failure to hate your family or hate holidays. You can't really have one without the other very easily, and if you really think it's a moral failure to not like having parentally induced dents in my skull & other PTSDy memories, go fuck yourself.
K
Friday, November 4, 2011
So this is why I don't blog for other people much, or go to many conferences.
Something I wrote here was reprinted on Thinking Person's Guide to Autism (with my permission, at their request). It was the story about C. You know, the C who had no reliable and honored means of communication and who was given no agency?
Apparently it was an anti-ABA screed, judging of his parents (and damn right I judge his parents. I'm not a hypocrite-everyone judges everyone. "Judging" does not mean "makes a negative assessment of someone and shares it". "Judging" is making any damn assessment, good, bad, or neutral, and keeping it to yourself or sharing or whatever, judgement already made.) We all do it, all the time, it's one of the things that makes us human, conceited because I was proud of what I had done (I don't understand what's wrong with that?), a bad example because I yelled at a woman who grabbed a child's body and made him do things he expressly indicated he did not want to do (because autistic kids don't deserve bodily agency? Forget that), and all kinds of other things I didn't say.
There are all kinds of controversial things I actually do say. If you must yell at me-and sometimes I think "terrorize the autistic" is an international sport-then yell at me for something I actually said. Don't yell at me for "tone"-we have had that discussion before and I think it should be an offense punishable by being cut off from the internet for 3 weeks. If I am talking about a specific event, unless it is about you it is not about you. You probably aren't that important. If I say something about a specific person, place, thing, or idea, I'm dead certain it's true. I have a painfully good situational memory and good pattern recognition-things that are honed to, you know, predict when people are going to slam your head into a wall.
I avoid contact with people who do these kinds of things because I've already had enough of it. I know where to find my mother (dents in the skull for all!). Speaking of skull dents, I know where to find the sack of shit who put me in the hospital with adrenal crisis, brain swelling so bad I couldn't stop throwing up and couldn't see. I know where to find the sorts of other people's parents who stab me in the arm-and yes it happened and go fuck yourself if you are going to tell me that I probably deserved it. No one deserves to be stabbed in the arm by a stranger or even someone they know, even if they are committing the huge crime of being autistic and adult at the same time. I know where to find the sharks. But I am tired of being forced to swim with them.
Apparently it was an anti-ABA screed, judging of his parents (and damn right I judge his parents. I'm not a hypocrite-everyone judges everyone. "Judging" does not mean "makes a negative assessment of someone and shares it". "Judging" is making any damn assessment, good, bad, or neutral, and keeping it to yourself or sharing or whatever, judgement already made.) We all do it, all the time, it's one of the things that makes us human, conceited because I was proud of what I had done (I don't understand what's wrong with that?), a bad example because I yelled at a woman who grabbed a child's body and made him do things he expressly indicated he did not want to do (because autistic kids don't deserve bodily agency? Forget that), and all kinds of other things I didn't say.
There are all kinds of controversial things I actually do say. If you must yell at me-and sometimes I think "terrorize the autistic" is an international sport-then yell at me for something I actually said. Don't yell at me for "tone"-we have had that discussion before and I think it should be an offense punishable by being cut off from the internet for 3 weeks. If I am talking about a specific event, unless it is about you it is not about you. You probably aren't that important. If I say something about a specific person, place, thing, or idea, I'm dead certain it's true. I have a painfully good situational memory and good pattern recognition-things that are honed to, you know, predict when people are going to slam your head into a wall.
I avoid contact with people who do these kinds of things because I've already had enough of it. I know where to find my mother (dents in the skull for all!). Speaking of skull dents, I know where to find the sack of shit who put me in the hospital with adrenal crisis, brain swelling so bad I couldn't stop throwing up and couldn't see. I know where to find the sorts of other people's parents who stab me in the arm-and yes it happened and go fuck yourself if you are going to tell me that I probably deserved it. No one deserves to be stabbed in the arm by a stranger or even someone they know, even if they are committing the huge crime of being autistic and adult at the same time. I know where to find the sharks. But I am tired of being forced to swim with them.
Monday, October 31, 2011
Autistics Speaking Day: For the People Who Speak With Me
This is sort of about allies, but not exactly.
This Autistics Speaking Day, I want to give a shout-out to the people who stand with me while I speak. The word ally works, ish, but that's not their primary role in my world.
They're my friends.
A lot of allies have that ally mentality, where they have chosen a just cause to do right in the world. And good for them-we need people who see the concept and are like "yeah, I'm all for that concept!" and spread the meme. People who speak truth to power in a general sense are a good thing.
But that's not the same thing.
A friend, at least a friend of mine, they have a choice. They'll have to probably make it pretty early in knowing me, because there's a lot of anti autistic and other ableist bigotry that I see every day, & I point it out (and this is why I am always SO. DAMN. TIRED). I see it, I call it, and then they have a choice:
They can minimize, justify, otherwise derail.
Or they can choose to be a decent human being.
As soon as someone starts saying "it isn't that bad" or "you're too sensitive", they have chosen to not be my friend. The ones who choose to be my friend, they consider things and come to a conclusion that ableism or anti autistic bigotry or strobing a light in my face or whatever isn't ok.
And they stand with me. Not like in the abstract "making things uncomfortable for disabled people isn't ok" way (and seriously, keep doing that), but in a bigger way.
In a "that is wrong and unacceptable and don't ever do it again and fuck you straight to hell for doing that shit to my friend" kind of way.
People can be attached to an idea. People are downright fierce about their attachments to people.
And for friends-at least the kind of friends I have-it is personal. Doing something bigoted isn't throwing some vague oppressive vibe into the air; doing something bigoted is directly hurting a real person with real characteristics besides being disabled. You aren't just shitting on "the disabled" when you do that, you aren't just excluding some vague potential people when you don't make things accessible-you are engaging in behavior that makes someone, a real someone, actually in someone's monkeysphere, uncomfortable or unsafe.
It's not really a 'thing' to speak for or on behalf of one's friends, so people doing stuff like leaving a persistently ableist pizza place for good isn't doing a deed for the disabled-it's "FUCK YOU! STOP HURTING MY FRIEND". There's a difference. If someone talks to an ally about how to, say, make people like me understand that they are just concerned about my safety in a rock climbing class, the instinctual response isn't necessarily going to be a condescending "she's right there. Tell her". It's just a different mindset.
So yeah. You want to be a fucking amazing ally? Don't become my ally. Don't work on behalf of me and my community. Become my friend and channel your inner fierce loyalty. It does way more good in my day to day life.
Besides, I am freaking awesome.
(oh, and my friends are pretty ok too).
This Autistics Speaking Day, I want to give a shout-out to the people who stand with me while I speak. The word ally works, ish, but that's not their primary role in my world.
They're my friends.
A lot of allies have that ally mentality, where they have chosen a just cause to do right in the world. And good for them-we need people who see the concept and are like "yeah, I'm all for that concept!" and spread the meme. People who speak truth to power in a general sense are a good thing.
But that's not the same thing.
A friend, at least a friend of mine, they have a choice. They'll have to probably make it pretty early in knowing me, because there's a lot of anti autistic and other ableist bigotry that I see every day, & I point it out (and this is why I am always SO. DAMN. TIRED). I see it, I call it, and then they have a choice:
They can minimize, justify, otherwise derail.
Or they can choose to be a decent human being.
As soon as someone starts saying "it isn't that bad" or "you're too sensitive", they have chosen to not be my friend. The ones who choose to be my friend, they consider things and come to a conclusion that ableism or anti autistic bigotry or strobing a light in my face or whatever isn't ok.
And they stand with me. Not like in the abstract "making things uncomfortable for disabled people isn't ok" way (and seriously, keep doing that), but in a bigger way.
In a "that is wrong and unacceptable and don't ever do it again and fuck you straight to hell for doing that shit to my friend" kind of way.
People can be attached to an idea. People are downright fierce about their attachments to people.
And for friends-at least the kind of friends I have-it is personal. Doing something bigoted isn't throwing some vague oppressive vibe into the air; doing something bigoted is directly hurting a real person with real characteristics besides being disabled. You aren't just shitting on "the disabled" when you do that, you aren't just excluding some vague potential people when you don't make things accessible-you are engaging in behavior that makes someone, a real someone, actually in someone's monkeysphere, uncomfortable or unsafe.
It's not really a 'thing' to speak for or on behalf of one's friends, so people doing stuff like leaving a persistently ableist pizza place for good isn't doing a deed for the disabled-it's "FUCK YOU! STOP HURTING MY FRIEND". There's a difference. If someone talks to an ally about how to, say, make people like me understand that they are just concerned about my safety in a rock climbing class, the instinctual response isn't necessarily going to be a condescending "she's right there. Tell her". It's just a different mindset.
So yeah. You want to be a fucking amazing ally? Don't become my ally. Don't work on behalf of me and my community. Become my friend and channel your inner fierce loyalty. It does way more good in my day to day life.
Besides, I am freaking awesome.
(oh, and my friends are pretty ok too).
Tuesday, September 20, 2011
In Which the Term "Self Advocate" Irritates the Shit Out of Me
I don't like the term "self advocate" as it's used right now. The "self" should be a given, it should be understood. I should be a disability rights advocate, an autism advocate, an accessibility advocate, a neurodivergence advocate. Stuff like that.
I'm not, though, in commonly used language. In commonly used language, those terms-especially autism advocate-are about parents and professionals. Most of these people are not autistic. It's fair to say the majority of them have no disability whatsoever. So why the hell is it my description that gets a qualifying appendage? Why am I not the default in the work I do?
That's really what it comes down to, isn't it? Allistic, enabled people are considered the default for anything and everything, so when someone like me-autistic, disabled-does something on my own behalf like every other adult in the world it's seen as so damn special and cutesy that they decide they need another word for it. A word, I may add, that implies that what I have to say is not as important as what "real" advocates have to say. I'm just talking about myself, you see. They're doing the really real work, for we need the great allistic savior! We're cast as sidekicks in our own movement.
That, obviously, is wrong.
It is my movement. The accurate term for people like me (and a lot of people whose work I admire, and who I can't list here without it running 2 pages and me forgetting someone and feeling like an asshat) shouldn't be self advocate. We should be called advocates. Those people who are co-opting my movement? You know, the ones calling themselves advocates while telling us that what we say is less than what we say for a whole number of reasons? They can be allies, if they wish to work with us. Or they can be parent-advocates.
But the term advocate in this context should belong to us. We shouldn't be peripheral to the movement. It is ours. Give it back to us.
I'm not, though, in commonly used language. In commonly used language, those terms-especially autism advocate-are about parents and professionals. Most of these people are not autistic. It's fair to say the majority of them have no disability whatsoever. So why the hell is it my description that gets a qualifying appendage? Why am I not the default in the work I do?
That's really what it comes down to, isn't it? Allistic, enabled people are considered the default for anything and everything, so when someone like me-autistic, disabled-does something on my own behalf like every other adult in the world it's seen as so damn special and cutesy that they decide they need another word for it. A word, I may add, that implies that what I have to say is not as important as what "real" advocates have to say. I'm just talking about myself, you see. They're doing the really real work, for we need the great allistic savior! We're cast as sidekicks in our own movement.
That, obviously, is wrong.
It is my movement. The accurate term for people like me (and a lot of people whose work I admire, and who I can't list here without it running 2 pages and me forgetting someone and feeling like an asshat) shouldn't be self advocate. We should be called advocates. Those people who are co-opting my movement? You know, the ones calling themselves advocates while telling us that what we say is less than what we say for a whole number of reasons? They can be allies, if they wish to work with us. Or they can be parent-advocates.
But the term advocate in this context should belong to us. We shouldn't be peripheral to the movement. It is ours. Give it back to us.
Tuesday, May 24, 2011
Streeeeessssssssssssssssssssssss
Hell is other people. Hell is awareness without understanding. Instead of trying to convince me I am a horrible unempathetic (a load of shit, btw) half-human for not being willing to forgive truly shitty things and for not supporting the WAAAAH MY KID IS BROKEN pity party, let's talk about being an autistic adult in the world that this attitude has created.
Please!
Let's start with a school which shall remain nameless. A teacher who shall remain nameless, who was all for me taking his indoor climbing class, knowing I have epilepsy. Then the A-word comes up and he's all "cannot understand risk" and "would be better suited to a yoga class". Yeah no. I don't like yoga. I like high places and getting to use my muscles. I evaluate risk for a living, except without time to think about it. I WAS A HIGH LEVEL GYMNAST AND THIS IS A COMMUNITY COLLEGE CLIMBING CLASS. It is well within my capabilities thank you very fucking much.
Or let's talk about disability services at the school, who argument-from-tone'd me after not listening to me at all, just this teacher. Or the deans who suggested I don't belong in college at all because I am autistic. Citing my GPA would just be ridiculous, given that it's very high, so let's go with ILLEGAL DISABILITY DISCRIMINATION WOOHOO. Or all involved telling people all about my neurology without verbal permission, much less the written consent they legally need to get.
Or let's talk about the never ending "yes, your strobe on your camera is a strobe light too. Yes, it can cause seizures. Yes, it's a dick move to 'forget' to turn it off. Yes, I have as much right to be in public as anyone else" battle. Or let's talk about the event photographer who shoved my friend and aggressively multiflashed in my face, because he takes pictures for money and therefore the rule did not apply to him.
Or let's talk about the bikers who say they're willing to take the risk of MY having a seizure from their strobes because epileptic people don't drive, right? So who really cares?
Or let's talk about the fucker at a pizza place some friends and I go to regularly who said that if the (nonessential to the venue) music choice was a seizure causing problem, we can all just leave. We have thrown paper airplanes and cupcakes and done awful ballet and lindy hopped and built forts in this damn restaurant but OMG NOT TEH BRAIN DIFFERENCES NOOOOOOOOOOOO. Everyone else who goes there might catch it and that'd be a travesty!
Or we can talk about how nothing is ever easy because people make it hard when it doesn't have to be, and when I express frustration it's because who I am is apparently incomplete and not a really real person, but if my parents (who by the way are poor excuses for human beings) were to express frustration about me, or tried to use my neurotype as a reason for being poor excuses for human beings, would get loveyhugs and sympathy. Because they are real people. And I am not.
(there's all the regular stress too--finals, projects before finals, work, med changes, etc. Usually it's tolerable. Now? Not so much. THANKS, AWARENESS!)
Please!
Let's start with a school which shall remain nameless. A teacher who shall remain nameless, who was all for me taking his indoor climbing class, knowing I have epilepsy. Then the A-word comes up and he's all "cannot understand risk" and "would be better suited to a yoga class". Yeah no. I don't like yoga. I like high places and getting to use my muscles. I evaluate risk for a living, except without time to think about it. I WAS A HIGH LEVEL GYMNAST AND THIS IS A COMMUNITY COLLEGE CLIMBING CLASS. It is well within my capabilities thank you very fucking much.
Or let's talk about disability services at the school, who argument-from-tone'd me after not listening to me at all, just this teacher. Or the deans who suggested I don't belong in college at all because I am autistic. Citing my GPA would just be ridiculous, given that it's very high, so let's go with ILLEGAL DISABILITY DISCRIMINATION WOOHOO. Or all involved telling people all about my neurology without verbal permission, much less the written consent they legally need to get.
Or let's talk about the never ending "yes, your strobe on your camera is a strobe light too. Yes, it can cause seizures. Yes, it's a dick move to 'forget' to turn it off. Yes, I have as much right to be in public as anyone else" battle. Or let's talk about the event photographer who shoved my friend and aggressively multiflashed in my face, because he takes pictures for money and therefore the rule did not apply to him.
Or let's talk about the bikers who say they're willing to take the risk of MY having a seizure from their strobes because epileptic people don't drive, right? So who really cares?
Or let's talk about the fucker at a pizza place some friends and I go to regularly who said that if the (nonessential to the venue) music choice was a seizure causing problem, we can all just leave. We have thrown paper airplanes and cupcakes and done awful ballet and lindy hopped and built forts in this damn restaurant but OMG NOT TEH BRAIN DIFFERENCES NOOOOOOOOOOOO. Everyone else who goes there might catch it and that'd be a travesty!
Or we can talk about how nothing is ever easy because people make it hard when it doesn't have to be, and when I express frustration it's because who I am is apparently incomplete and not a really real person, but if my parents (who by the way are poor excuses for human beings) were to express frustration about me, or tried to use my neurotype as a reason for being poor excuses for human beings, would get loveyhugs and sympathy. Because they are real people. And I am not.
(there's all the regular stress too--finals, projects before finals, work, med changes, etc. Usually it's tolerable. Now? Not so much. THANKS, AWARENESS!)
Saturday, April 9, 2011
More Consequences of Awareness
Kay.
So I'm taking a rock climbing class at the local community college. One of my good friends is taking it with me (for fun, and because, well, having a seizure at the top of a climb would be pretty horrendous if no one knew what was going on).
A few things to note right now:
a) I'm pretty much left handed for athletic purposes.
b) It takes me a few tries to reverse something to work for my left hand-ESPECIALLY if I look at it forward on or from anywhere but right next to the demonstrator.
c) I start displaying imminent frustration before I really notice it, especially when the lights are bad (they were).
d) On me, that looks like sideways hand flapping, gettingallthewordsoutatonce, being a bit more "don't touch me".
I get services from the disability office at school. I am not required to tell my instructors what I have, but it's not like it's a big secret, and I don't want autisticy stuff to be assumed to be seizure activity or vice versa, so everyone knows. No big deal. Or it shouldn't be.
But! My rock climbing teacher! He's *aware*! So we're doing our thing in class, learning to belay after we learn to make the knot. All the staff and instructor types are right handed. Apparently I'm the only left handed person they've ever met. So they tell me 15 different ways to do things, most of which amount to "be right handed".
I'm a bit frustrated with this, but fine. Whatever. I can climb like woah. I manage to not drop my friend for whom I am belaying-I was clipped into a ground anchor because of a significant size differential, but he did not, in fact, die. I also did not die while climbing. Well done, us.
Then this minty staff lady comes over and tells me to do the opposite of what the instructor told me. Oh...kay...
None of these people have The One True Truth of belaying, obviously. All the things I did did, in fact, work. But being told 3 different things in 5 minutes (again, most of which amount to "be right handed") is a bit much. I'm still clipped in to the ground anchor, ready to go, my hands flap a little.
"Unclip."
"uh, what"
"Unclip. There seems to be negative energy and emotions.:
"...what"
Blah blah unsafe blah blah not concentrating blah blah frustrated.
"Well, you told me one thing and she told me another and it's what I was doing so I'm processing".
"Unclip & we can have a discussion"
"...I want a cognitive interpreter..."
Seriously, I had no idea what I did. None. The first thing that came up in the 'discussion' is that as an autistic person I just operate a bit differently, and oh man did the condescension turn on.
No, I do not need little words. No, I am not going to hurt you (WHAT is it with instructors asking me that this week? I'm 120 pounds. I am about as intimidating as a rabbit). My friend, who actually knows me, trusts me to not drop him. Please, keep your distance. Please, stop acting like having me here is a big fucking hassle. "are you sure you can...do this?" Why yes, yes I am. Crazy, but I'm in pretty good shape.
I do, in fact, learn even! I'm good with the distance keeping, honestly. I'm not so good with you talking to my friend (who was cognitive interpreting) like I'm a recalcitrant child, like I cannot hear you. I am not ok with the ableist language to my classmates and the assumption I wouldn't get it. Yeah, 'people like me' do in fact have recreational activities.
Oh, people like me are even adults! I don't care how well meaning your statements are, when they're talking points out of PSAs about children, I hate you. No, I won't fucking take a 'time out'. I will go get food. I will go for a walk. Anyone who thinks 'time out' is acceptable language to use with a grown woman is too far out of realityland for me to listen to, ever, but yes, I do in fact remove myself from situations.
Oh. The catalyst for his freak out? Flapping is BAD. No. Seriously. I thought he was saying it to cover for something even more ridiculous, friend said he was dead serious. Awareness tells him so!
Thanks, 'awareness'! I need to have my coping mechanisms demonized! It makes my whole damn day! I need to be treated like a kindergartener by a community college PE teacher! That made my whole week! And, shit! Having half my teachers afraid of me, THAT makes my whole year! Because we all know that all autistic people are Manchurian Candidates or something, just WAITING to completely lose their shit and destroy everything in our paths!
Except we aren't. If this is 'awareness', ignorance really is bliss.
So I'm taking a rock climbing class at the local community college. One of my good friends is taking it with me (for fun, and because, well, having a seizure at the top of a climb would be pretty horrendous if no one knew what was going on).
A few things to note right now:
a) I'm pretty much left handed for athletic purposes.
b) It takes me a few tries to reverse something to work for my left hand-ESPECIALLY if I look at it forward on or from anywhere but right next to the demonstrator.
c) I start displaying imminent frustration before I really notice it, especially when the lights are bad (they were).
d) On me, that looks like sideways hand flapping, gettingallthewordsoutatonce, being a bit more "don't touch me".
I get services from the disability office at school. I am not required to tell my instructors what I have, but it's not like it's a big secret, and I don't want autisticy stuff to be assumed to be seizure activity or vice versa, so everyone knows. No big deal. Or it shouldn't be.
But! My rock climbing teacher! He's *aware*! So we're doing our thing in class, learning to belay after we learn to make the knot. All the staff and instructor types are right handed. Apparently I'm the only left handed person they've ever met. So they tell me 15 different ways to do things, most of which amount to "be right handed".
I'm a bit frustrated with this, but fine. Whatever. I can climb like woah. I manage to not drop my friend for whom I am belaying-I was clipped into a ground anchor because of a significant size differential, but he did not, in fact, die. I also did not die while climbing. Well done, us.
Then this minty staff lady comes over and tells me to do the opposite of what the instructor told me. Oh...kay...
None of these people have The One True Truth of belaying, obviously. All the things I did did, in fact, work. But being told 3 different things in 5 minutes (again, most of which amount to "be right handed") is a bit much. I'm still clipped in to the ground anchor, ready to go, my hands flap a little.
"Unclip."
"uh, what"
"Unclip. There seems to be negative energy and emotions.:
"...what"
Blah blah unsafe blah blah not concentrating blah blah frustrated.
"Well, you told me one thing and she told me another and it's what I was doing so I'm processing".
"Unclip & we can have a discussion"
"...I want a cognitive interpreter..."
Seriously, I had no idea what I did. None. The first thing that came up in the 'discussion' is that as an autistic person I just operate a bit differently, and oh man did the condescension turn on.
No, I do not need little words. No, I am not going to hurt you (WHAT is it with instructors asking me that this week? I'm 120 pounds. I am about as intimidating as a rabbit). My friend, who actually knows me, trusts me to not drop him. Please, keep your distance. Please, stop acting like having me here is a big fucking hassle. "are you sure you can...do this?" Why yes, yes I am. Crazy, but I'm in pretty good shape.
I do, in fact, learn even! I'm good with the distance keeping, honestly. I'm not so good with you talking to my friend (who was cognitive interpreting) like I'm a recalcitrant child, like I cannot hear you. I am not ok with the ableist language to my classmates and the assumption I wouldn't get it. Yeah, 'people like me' do in fact have recreational activities.
Oh, people like me are even adults! I don't care how well meaning your statements are, when they're talking points out of PSAs about children, I hate you. No, I won't fucking take a 'time out'. I will go get food. I will go for a walk. Anyone who thinks 'time out' is acceptable language to use with a grown woman is too far out of realityland for me to listen to, ever, but yes, I do in fact remove myself from situations.
Oh. The catalyst for his freak out? Flapping is BAD. No. Seriously. I thought he was saying it to cover for something even more ridiculous, friend said he was dead serious. Awareness tells him so!
Thanks, 'awareness'! I need to have my coping mechanisms demonized! It makes my whole damn day! I need to be treated like a kindergartener by a community college PE teacher! That made my whole week! And, shit! Having half my teachers afraid of me, THAT makes my whole year! Because we all know that all autistic people are Manchurian Candidates or something, just WAITING to completely lose their shit and destroy everything in our paths!
Except we aren't. If this is 'awareness', ignorance really is bliss.
Monday, November 8, 2010
My brain is not your punchline.
I've been searching twitter for the #epilepsy tag.
A lot of what I'm finding is awareness stuff, including Epilepsy Foundation retweeting their Seizure Smart link (I'd post it, but it's too simplistic). And then I'm finding things that make me stabby.
No, you don't have fucking epilepsy in your fucking arm because it's tired. That is called exertional tremor, and arms do not have epilepsy. Brains do, and while they can manifest as arm shaking, that's not the same as exhaustion.
Your friend who is angry is not going to have a godsdamned seizure. That isn't how epilepsy works. They can shout themselves blue at you for being an utter shithead, and yet chances are good they will not have a seizure.
A visually overstimulating video that gives you a headache does not mean you have epilepsy. Seizures do not feel like headaches. Headaches do not feel like seizures.
Whatever you are doing isn't going to "give you epilepsy". Jesus fuck. I could spit in your cheerios and sneeze on your face and put you in a room with all my seizure triggers and if you have a normal seizure threshold, it will not do diddly shit.
You aren't cute, you aren't funny, no, a Ceaser salad isn't dangerous, and my brain is not your punchline.
A lot of what I'm finding is awareness stuff, including Epilepsy Foundation retweeting their Seizure Smart link (I'd post it, but it's too simplistic). And then I'm finding things that make me stabby.
No, you don't have fucking epilepsy in your fucking arm because it's tired. That is called exertional tremor, and arms do not have epilepsy. Brains do, and while they can manifest as arm shaking, that's not the same as exhaustion.
Your friend who is angry is not going to have a godsdamned seizure. That isn't how epilepsy works. They can shout themselves blue at you for being an utter shithead, and yet chances are good they will not have a seizure.
A visually overstimulating video that gives you a headache does not mean you have epilepsy. Seizures do not feel like headaches. Headaches do not feel like seizures.
Whatever you are doing isn't going to "give you epilepsy". Jesus fuck. I could spit in your cheerios and sneeze on your face and put you in a room with all my seizure triggers and if you have a normal seizure threshold, it will not do diddly shit.
You aren't cute, you aren't funny, no, a Ceaser salad isn't dangerous, and my brain is not your punchline.
Tuesday, November 2, 2010
Same Old Keynote, Wrong Crowd.
So last month I went to the Autism Society of Oregon conference, which was theoretically on adult issues. Theoretically, I say.
Lee Grossman, president and CEO of ASA for about a zillion years, gave the same keynote he gives everywhere. Contrary to popular belief, I don't actually start the day angry, but damn, give me a big heaping pile of bullshit first thing in the morning and I'll get angry, and call you on it too.
So, this is an adult conference, right? He's been around at least a decade in ASA high up land, I know I'm not the only person to make very clear why his old schtick is unacceptable, or even the first. And you can imagine that at a conference supposedly focused on adult autism, there are going to be, like, adult autistics and people who recognize that autistic children grow into autistic adults, right?
The first thing that rubbed me wrong was before he even started. I guess I can forgive the puzzle ribbon, ish, but I cannot think of a single reason for the adorable age 10 and under poster children on the first slide. There are a whole lot of adult autistics. What's with the children?
Then he went into actually talking. The exactly one thing he said that I agree with is this: "the system is broken". It is. It is indeed broken. It spits us out at 18 or 21 and shoves us into the cracks.
Now, hey! Let's get onto why! Call on me call on me! Or call on Mr. CEO, as that's where the rest of the keynote went!
The whole thing was about how it's a family issue. "When one family member has autism, the whole family has autism". MY ASS. My autism is not about my parents or my siblings or my non autistic friends and extended family. It is my neurology. It is not theirs. No matter how much they listen to me, how much they try to understand, it is not about them. It's a lot easier to protect the martyr mentality when you insist it's about you, but that's just not how it is. As long as it's considered to be our parents' thing, though, the system will continue to be broken. We keep having to fight for ownership of our own experiences, and that's not right. It isn't even wrong. It's so backwards there is not yet an adjective for it.
And he was just getting started! After that we got the whole "vaccines are a likely cause of autism!" shoutout, we got the whole cure or nothing thing--fun fact! You can help people, you can help them a whole lot, without trying to "fix" them. Sick people need cures. All people have some sort of support needs. And while we're on the whole sick people thing, Mr. Grossman is guilty (again) of comparing autism to cancer & heart disease. I know quite a few people who've died of cancer. I know quite a few who died or will eventually die of heart disease. The only people who die of autism are the ones who are left to rot by the system and those who are killed by their parents. That isn't dying of autism, though. That's dying by a parent-centered system.
The real winner of the whole thing was the alarmist autism as a tragedy language. According to the Autism Society, people like me are:
-a tsunami
-a tidal wave
-a national emergency
-a crisis
-something to be combated.
Charming, am I right? Full of human dignity and respect of autistic personhood, huh? Yeah, I didn't think so either.
Then, because my irony meter wasn't broken enough, came the bit that would have been pretty awesome had he left out the middle hour or so of his 75 minute speech: a nod to civil rights and quality of life, employment and higher education, and how damn hireable we are.
What.
Yes, because what everyone and their dog knows about autism right now is that we are a violent earthquake or something, in large part because of the fearmongering rhetoric of Mr. Grossman and those in similar positions, employers are really going to be lining up to hire people who they know are autistic. Absolutely! That's how the world works, isn't it?
Oh. Wait. Back here in reality, prejudice wins.
If you really want to improve my quality of life, stoppit with the Tragedy Model of Disability. Stoppit with the alarmist language. Stop making it all about parents, professionals, everyone but autistic people. People high in the autism charity infrastructure who do these things are a bigger part of the problem than autism itself. Oh yes, I went there. It's just not about you, Mr. Grossman and counterparts.
It's about us.
Lee Grossman, president and CEO of ASA for about a zillion years, gave the same keynote he gives everywhere. Contrary to popular belief, I don't actually start the day angry, but damn, give me a big heaping pile of bullshit first thing in the morning and I'll get angry, and call you on it too.
So, this is an adult conference, right? He's been around at least a decade in ASA high up land, I know I'm not the only person to make very clear why his old schtick is unacceptable, or even the first. And you can imagine that at a conference supposedly focused on adult autism, there are going to be, like, adult autistics and people who recognize that autistic children grow into autistic adults, right?
The first thing that rubbed me wrong was before he even started. I guess I can forgive the puzzle ribbon, ish, but I cannot think of a single reason for the adorable age 10 and under poster children on the first slide. There are a whole lot of adult autistics. What's with the children?
Then he went into actually talking. The exactly one thing he said that I agree with is this: "the system is broken". It is. It is indeed broken. It spits us out at 18 or 21 and shoves us into the cracks.
Now, hey! Let's get onto why! Call on me call on me! Or call on Mr. CEO, as that's where the rest of the keynote went!
The whole thing was about how it's a family issue. "When one family member has autism, the whole family has autism". MY ASS. My autism is not about my parents or my siblings or my non autistic friends and extended family. It is my neurology. It is not theirs. No matter how much they listen to me, how much they try to understand, it is not about them. It's a lot easier to protect the martyr mentality when you insist it's about you, but that's just not how it is. As long as it's considered to be our parents' thing, though, the system will continue to be broken. We keep having to fight for ownership of our own experiences, and that's not right. It isn't even wrong. It's so backwards there is not yet an adjective for it.
And he was just getting started! After that we got the whole "vaccines are a likely cause of autism!" shoutout, we got the whole cure or nothing thing--fun fact! You can help people, you can help them a whole lot, without trying to "fix" them. Sick people need cures. All people have some sort of support needs. And while we're on the whole sick people thing, Mr. Grossman is guilty (again) of comparing autism to cancer & heart disease. I know quite a few people who've died of cancer. I know quite a few who died or will eventually die of heart disease. The only people who die of autism are the ones who are left to rot by the system and those who are killed by their parents. That isn't dying of autism, though. That's dying by a parent-centered system.
The real winner of the whole thing was the alarmist autism as a tragedy language. According to the Autism Society, people like me are:
-a tsunami
-a tidal wave
-a national emergency
-a crisis
-something to be combated.
Charming, am I right? Full of human dignity and respect of autistic personhood, huh? Yeah, I didn't think so either.
Then, because my irony meter wasn't broken enough, came the bit that would have been pretty awesome had he left out the middle hour or so of his 75 minute speech: a nod to civil rights and quality of life, employment and higher education, and how damn hireable we are.
What.
Yes, because what everyone and their dog knows about autism right now is that we are a violent earthquake or something, in large part because of the fearmongering rhetoric of Mr. Grossman and those in similar positions, employers are really going to be lining up to hire people who they know are autistic. Absolutely! That's how the world works, isn't it?
Oh. Wait. Back here in reality, prejudice wins.
If you really want to improve my quality of life, stoppit with the Tragedy Model of Disability. Stoppit with the alarmist language. Stop making it all about parents, professionals, everyone but autistic people. People high in the autism charity infrastructure who do these things are a bigger part of the problem than autism itself. Oh yes, I went there. It's just not about you, Mr. Grossman and counterparts.
It's about us.
Monday, November 1, 2010
Postictal Stream of Consciousness
**I wrote this when I woke up with a BAAAD seizure hangover. The thought process isn't quite so languagey, but this is how it translates to words. The swearing is about accurate.*
Ohmigod, what is that sound? So loud, it hurts.
Oh. It's the cat purring.
Go 'way, blankets. Scratchy. Someone turn off the sun. My eyes, I'm gunna claw them outta my head.
Shitfuck. Moved. Ow to the 10th power. Head wants to split open. Brain too big, trying to expand, leaking outta my ears. S'wrong with my arm? Tingles. Huh.
So tiiiiiiired. Did I walk 'round the state in my sleep? No, sleepytired, drugged tired not exertion tired.
Why can't I talk? Damnandahalf. Phone ringing. "hng?" Gibberish comes through. "eh. feh." Click.
Water. Signing it makes it come, right? No? My hands swear again. Sleep? More sleep? Please? No. Have work.
What happened? S'11 AM. Think. Brain hurts. Big black memory hole. What'd I do yesterday? What's today? Oh. I always do the same thing yesterday.
Cast about through the cottonhead for details. Hadda coffee. Ok, 24 hours ago. Need more. Took a bus, OK 21 hours ago. Ummmm ate...ice cream? 19 hours ago. Changed shirts....16 hours ago, Anything else? No? Just a headache? Just fatigue like climbing out of an ocean of tranquilizers?
Shower. Coffee. Can talk now. Dunwanna. Lurch around, foggy. Maybe ok tomorrow, maybe not.
Fuck seizures.
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