My angry post was for me. Not for anyone else.
But this was what I wrote for George. It is, after all, about him. Kathryn Hedges graciously read it for me at the vigil in California:
I hate writing for murdered people. It does no good. They're still dead, and people always try to make what I say all about themselves & then they get all mad and hateful at me. But it isn't about them. And it isn't about me, either. It's about the person who is dead but shouldn't be.
This time, it's about George, a pleasant 22 year old man who will never see 23. Before George, it was Katie. It was Christopher. It was Ulysses. It was 100s of autistics before them, know and unknown to me.
These murders are not mercy killings. They are murders, and I am 100% confident in saying that no parent who truly loves their child can kill them. Love does not work that way.
Those of you who are not autistic may be inclined to sympathize with George's murderer. Maybe what you know about autism is tragedy-and-terror style awareness, all about devastation and loss. Maybe you know her, maybe you liked her. Maybe she was your neighbour. Maybe you can't wrap your head around the reality that you had coffee with a murderer. Maybe trying to find mitigating factors makes it easier to integrate that you know someone who killed her son.
Those of you who are autistic are probably feeling more like what I feel-saddened that yet another of our number was killed. Maybe, like me, you are disgusted at the race to exonerate the murderer in the media. And, if you are like me, you are terrified that everyone is blaming lack of services, stress, everything but “HIS MOTHER SHOT HIM” for George's death.
I hate writing for murdered people. Again and again and again I have to defend the very right of the victim to be treated as a human being in all reports, for his very personhood and the personhood of myself and those I hold dear. This stuff shouldn't need saying. My outrage should be the norm, not the exception.
The tragedy here is not autism. The tragedy here is that George, like countless autistics before him, was murdered. The tragedy is that people feel more for his killer than they do for him.
Showing posts with label activism. Show all posts
Showing posts with label activism. Show all posts
Monday, March 19, 2012
Saturday, February 18, 2012
I'm not just activism
How to provoke a full scale meltdown while trying to do the opposite:
Bring up my activism, especially as it relates to a kid I actually know, when I am already upset or feeling insecure or unvalued for whatever reason.
Wait, what? Activism is important and awesome!
I never said it isn't. But doing activism sucks. It is difficult. It is unpleasant. People say truly abominable things to me and about me, they lie about me, they attack people I care about deeply, they physically threaten (or occasionally attack) me. It never ends. There's always a battle, it is always uphill, it always sucks. Activism forces me to use skills I am not actually good at to try to get society to do things people don't want to do because in their eyes I and people like me don't deserve them.
Activism drains me. But I do it anyway, because I feel a deep responsibility to the neurodivergent kids I know, and the ones I don't know. It is my job to help people like me build a world that doesn't attack us for existing. If I don't fight a lot of these fights, no one else will, and then I have failed people who are going to have their own shit to work through. That sucks.
The bad thing about accomplishing things in something as unforgiving as activism is that no matter what, you're expected to keep going, and it sucks. The bad thing about accomplishing things in regards to activism is that keeping going becomes your only value.
I do more than activism, though. I am more than activism. But that doesn't mean I am valued as more than an activist. Sometimes I wish more than anything I could quit, but I know, just know, that the only reason people tolerate my presence on this planet is that I get shit done. If I am no longer useful, I no longer matter. No matter how thoroughly exhausted I am with everything, if I don't keep going, don't keep fighting, my existence no longer has meaning, I no longer have meaning, there is no point to the continued existence of Neurodivergent K.
It's a lot of pressure, being only known or respected or liked or whatever because of doing hard shit. If I fail, I don't just fail at fixing the things I was fixing. I fail at being even remotely worthwhile as a person, because all I am defined as seems to be activism.
And that isn't what I want. I cannot handle that. If I were to quit activism tomorrow, or next week, or next month, or next year, I need to still matter because I am a worthwhile person. Not just because I get shit done, but because, activism or not, I matter.
I need to be more than my advocacy. I have to.
Bring up my activism, especially as it relates to a kid I actually know, when I am already upset or feeling insecure or unvalued for whatever reason.
Wait, what? Activism is important and awesome!
I never said it isn't. But doing activism sucks. It is difficult. It is unpleasant. People say truly abominable things to me and about me, they lie about me, they attack people I care about deeply, they physically threaten (or occasionally attack) me. It never ends. There's always a battle, it is always uphill, it always sucks. Activism forces me to use skills I am not actually good at to try to get society to do things people don't want to do because in their eyes I and people like me don't deserve them.
Activism drains me. But I do it anyway, because I feel a deep responsibility to the neurodivergent kids I know, and the ones I don't know. It is my job to help people like me build a world that doesn't attack us for existing. If I don't fight a lot of these fights, no one else will, and then I have failed people who are going to have their own shit to work through. That sucks.
The bad thing about accomplishing things in something as unforgiving as activism is that no matter what, you're expected to keep going, and it sucks. The bad thing about accomplishing things in regards to activism is that keeping going becomes your only value.
I do more than activism, though. I am more than activism. But that doesn't mean I am valued as more than an activist. Sometimes I wish more than anything I could quit, but I know, just know, that the only reason people tolerate my presence on this planet is that I get shit done. If I am no longer useful, I no longer matter. No matter how thoroughly exhausted I am with everything, if I don't keep going, don't keep fighting, my existence no longer has meaning, I no longer have meaning, there is no point to the continued existence of Neurodivergent K.
It's a lot of pressure, being only known or respected or liked or whatever because of doing hard shit. If I fail, I don't just fail at fixing the things I was fixing. I fail at being even remotely worthwhile as a person, because all I am defined as seems to be activism.
And that isn't what I want. I cannot handle that. If I were to quit activism tomorrow, or next week, or next month, or next year, I need to still matter because I am a worthwhile person. Not just because I get shit done, but because, activism or not, I matter.
I need to be more than my advocacy. I have to.
Wednesday, January 25, 2012
You're disabled & demand access, GTFO.
This past week I wrote two blog posts about my increasing frustration with the events of Portland swing dance. This first one was basically an explanation of...why I won't pay upward of $100 to again be assaulted by a photographer & be told that the event organizers won't do anything about it. I know, I am so damn unreasonable.
This one, featuring a comment stuck in the spam trap & a photo of inadequate passive aggressive signage was a followup to both that and a "seriously? Does anyone think this sign is remotely approaching acceptable?" It's the size of a damn potholder!
Apparently someone doesn't like getting criticized on the internet, since I got an email from Mindy Hazeltine telling me that I may not go to Stumptown dance events anymore, for reasons that amount to "you are disabled and willing to make people uncomfortable to ensure your access."
That's right.
The kids who throw each other & almost drop each other on their heads? They're cool. The guy who regularly throws his follows into other couples & grinds all on new ladies? Oh, he's fine too. The retired military man who takes photos up shirts & down skirts and who has gotten into physical altercations on the dance floor? Yeah, he's all good too, just like the assaulty Evrim.
But oh man, be epileptic & insist on your access? GTFO! EMOTIONAL ABUSE! Make it much harder to switch out the good sign for the bad sign by removing it so the only choice is the good sign? OMG LARCENY. When Stumptown Dance promises to make an announcement & to talk to flashing people, and then fails, what am I supposed to do? Oh right. Be niiiiiiiice. Because it's totally expected to be niiiiiiiiiiice to people who are hurting you rightthissecond.
I wrote about that, actually. Over a year ago. I am not required to be nice. You are, however, required to not kill me. I know, I know, it makes you feel bad to be told, not asked, that you shouldn't kill me. I'm looking for a fuck to give, can't find one. Not feeling bad is not a right. Not being killed is. I wrote about this derailment, argument from tone in lateish 2011. Cuz "you were mean in telling me to not kill you" is a spurious argument, and people need to stop making it. As I wrote as one of the very first posts here, I shouldn't have to beg.
I briefly mentioned the whole flash photography issue in my BADD 2011 post, too. Being a one person anti strobe league for this long? It's hard. You get tired. You get real tired when people are like "you are inconvenient. Pay me to hurt you, or go away. I won't do the legally required accommodations because I don't want to!
A long time ago I wrote a post, Epilepsy Is, again inspired by the ableist treatment at Stumptown Dance events and the assaults by Mr Icoz and the resulting lack of acceptable resolution by Portland Lindy Society. One of the first posts on this blog was also about dance, and the ableism I've been fighting since day 1: Why This is a Battle Worth Fighting.
This is a long-standing problematic pattern. It doesn't matter if you don't find it 'convenient', or if you believe epilepsy is really demons, or whatever. The fact of the matter is there is a law, and excluding someone for insisting the law is followed rather than excluding those who will not keep it, that is a special kind of bigoted.
This one, featuring a comment stuck in the spam trap & a photo of inadequate passive aggressive signage was a followup to both that and a "seriously? Does anyone think this sign is remotely approaching acceptable?" It's the size of a damn potholder!
Apparently someone doesn't like getting criticized on the internet, since I got an email from Mindy Hazeltine telling me that I may not go to Stumptown dance events anymore, for reasons that amount to "you are disabled and willing to make people uncomfortable to ensure your access."
That's right.
The kids who throw each other & almost drop each other on their heads? They're cool. The guy who regularly throws his follows into other couples & grinds all on new ladies? Oh, he's fine too. The retired military man who takes photos up shirts & down skirts and who has gotten into physical altercations on the dance floor? Yeah, he's all good too, just like the assaulty Evrim.
But oh man, be epileptic & insist on your access? GTFO! EMOTIONAL ABUSE! Make it much harder to switch out the good sign for the bad sign by removing it so the only choice is the good sign? OMG LARCENY. When Stumptown Dance promises to make an announcement & to talk to flashing people, and then fails, what am I supposed to do? Oh right. Be niiiiiiiice. Because it's totally expected to be niiiiiiiiiiice to people who are hurting you rightthissecond.
I wrote about that, actually. Over a year ago. I am not required to be nice. You are, however, required to not kill me. I know, I know, it makes you feel bad to be told, not asked, that you shouldn't kill me. I'm looking for a fuck to give, can't find one. Not feeling bad is not a right. Not being killed is. I wrote about this derailment, argument from tone in lateish 2011. Cuz "you were mean in telling me to not kill you" is a spurious argument, and people need to stop making it. As I wrote as one of the very first posts here, I shouldn't have to beg.
I briefly mentioned the whole flash photography issue in my BADD 2011 post, too. Being a one person anti strobe league for this long? It's hard. You get tired. You get real tired when people are like "you are inconvenient. Pay me to hurt you, or go away. I won't do the legally required accommodations because I don't want to!
A long time ago I wrote a post, Epilepsy Is, again inspired by the ableist treatment at Stumptown Dance events and the assaults by Mr Icoz and the resulting lack of acceptable resolution by Portland Lindy Society. One of the first posts on this blog was also about dance, and the ableism I've been fighting since day 1: Why This is a Battle Worth Fighting.
This is a long-standing problematic pattern. It doesn't matter if you don't find it 'convenient', or if you believe epilepsy is really demons, or whatever. The fact of the matter is there is a law, and excluding someone for insisting the law is followed rather than excluding those who will not keep it, that is a special kind of bigoted.
Saturday, September 3, 2011
'Overcoming' Is Not a Moral Obligation
When you are disabled, there are a couple things that are expected:
a) people will say you can't do something
b) people will push you to do that thing anyway
And if people can and want to do the things they "can't" do, good for them. I support people's rights to push their perceived limits.
What I don't support is pressure to push any and every limit intrinsically or extrinsically imposed. Given everything else that we do (like having to fight for our right to be seen as human), developing a knee jerk reaction of "watch me!" when someone says that we can't do something is just asking for long term burn out.
Sometimes they're wrong, and we can do that. Sometimes we just can't, and that's ok. Sometimes we kind of can, but the energy trade off just isn't worth it.
Society demands that we keep overcoming, overcoming, overcoming. But we don't have to. Nowhere is it written that to be a really real human you have to brute force your way through your limits. Nowhere is it written that not doing so makes you less worthy. For most people, constantly refusing to acknowledge that you have limits is seen as a problem. We all have limits & we are supposed to acknowledge them, know where they are, work within them.
But when you have a disability, it's like everyone expects you to push past your limits all the time. They want to be inspired, or they want to not have to deal with the fact that a disability means "there are things I cannot and will never be able to do", even as they expect me to know there are things I can do that they will never be able to.
So we are pushed to keep 'overcoming', and if we can't we are failures and lazy. But if we can, we aren't really disabled. It's a no win either way. Our choices are be burned out or be looked down on even more, be told we aren't disabled because we can do xyz or because we can't.
Feh. That is all.
a) people will say you can't do something
b) people will push you to do that thing anyway
And if people can and want to do the things they "can't" do, good for them. I support people's rights to push their perceived limits.
What I don't support is pressure to push any and every limit intrinsically or extrinsically imposed. Given everything else that we do (like having to fight for our right to be seen as human), developing a knee jerk reaction of "watch me!" when someone says that we can't do something is just asking for long term burn out.
Sometimes they're wrong, and we can do that. Sometimes we just can't, and that's ok. Sometimes we kind of can, but the energy trade off just isn't worth it.
Society demands that we keep overcoming, overcoming, overcoming. But we don't have to. Nowhere is it written that to be a really real human you have to brute force your way through your limits. Nowhere is it written that not doing so makes you less worthy. For most people, constantly refusing to acknowledge that you have limits is seen as a problem. We all have limits & we are supposed to acknowledge them, know where they are, work within them.
But when you have a disability, it's like everyone expects you to push past your limits all the time. They want to be inspired, or they want to not have to deal with the fact that a disability means "there are things I cannot and will never be able to do", even as they expect me to know there are things I can do that they will never be able to.
So we are pushed to keep 'overcoming', and if we can't we are failures and lazy. But if we can, we aren't really disabled. It's a no win either way. Our choices are be burned out or be looked down on even more, be told we aren't disabled because we can do xyz or because we can't.
Feh. That is all.
Friday, August 19, 2011
To the Girl in Missouri Who Was Attacked At School
**possible trigger warning.**
Hey there,
I don't know your name (and because of how hateful people are, I am quite glad that who you are hasn't made the media-you've had enough awful stuff from people for at least 2 lifetimes), but I do know we have a few things in common:
-We're both women/girls/otherwise female
-We're both disabled
-We've both been maltreated
-We've both had people with power fail us miserably
There are some things that you probably aren't hearing enough of.
It wasn't your fault. Nothing you could possibly have done warranted rape, or being forced to apologize to a rapist, or being assaulted, or being expelled, or being raped again. Nothing. Nothing. Nothing.
You did the right thing. The right thing is really hard to do, because women are too often deemed responsible for bad shit that happens to us, and disabled people are too frequently viewed as not real people. That is a load of crap-you have every right to expect to be treated right. Reporting may have been the most difficult thing you'll ever do, the fallout has sure sucked, but it was the right thing. Even if you didn't know how brave it was at the time, it was courageous. Not just because you are a kid and have a disability, but because it takes a strong person to stand up for herself.
A large number of the adults in your life utterly failed you. There is no excuse, none at all. It seems like your mom is fighting pretty hard for you, but that the people at your school are fighting back, and that's disgusting really. There is nothing you did to deserve how they are handling this. Nothing, nothing, nothing. In your place I'd feel that there was nothing the school could do to make it better, but that doesn't mean they shouldn't try.
There are a lot of people out here who are outraged by your treatment. We are on your side. Some of us are women, some of us are rape survivors, some of us have disabilities, and some of us are just people who are horrified and outraged by what you've been put through. You have allies, even if you don't know us and we don't know you. WE ARE ON YOUR SIDE, and we are hoping that you get justice, and we are hoping that you are ok. We are hoping that you get what you need to thrive as you continue growing up.
In support and solidarity,
Neurodivergent K
Hey there,
I don't know your name (and because of how hateful people are, I am quite glad that who you are hasn't made the media-you've had enough awful stuff from people for at least 2 lifetimes), but I do know we have a few things in common:
-We're both women/girls/otherwise female
-We're both disabled
-We've both been maltreated
-We've both had people with power fail us miserably
There are some things that you probably aren't hearing enough of.
It wasn't your fault. Nothing you could possibly have done warranted rape, or being forced to apologize to a rapist, or being assaulted, or being expelled, or being raped again. Nothing. Nothing. Nothing.
You did the right thing. The right thing is really hard to do, because women are too often deemed responsible for bad shit that happens to us, and disabled people are too frequently viewed as not real people. That is a load of crap-you have every right to expect to be treated right. Reporting may have been the most difficult thing you'll ever do, the fallout has sure sucked, but it was the right thing. Even if you didn't know how brave it was at the time, it was courageous. Not just because you are a kid and have a disability, but because it takes a strong person to stand up for herself.
A large number of the adults in your life utterly failed you. There is no excuse, none at all. It seems like your mom is fighting pretty hard for you, but that the people at your school are fighting back, and that's disgusting really. There is nothing you did to deserve how they are handling this. Nothing, nothing, nothing. In your place I'd feel that there was nothing the school could do to make it better, but that doesn't mean they shouldn't try.
There are a lot of people out here who are outraged by your treatment. We are on your side. Some of us are women, some of us are rape survivors, some of us have disabilities, and some of us are just people who are horrified and outraged by what you've been put through. You have allies, even if you don't know us and we don't know you. WE ARE ON YOUR SIDE, and we are hoping that you get justice, and we are hoping that you are ok. We are hoping that you get what you need to thrive as you continue growing up.
In support and solidarity,
Neurodivergent K
Saturday, April 30, 2011
Some reflections on Autism Miseducation Month
(This was originally titled reflections on Autism Hysteria Month, but someone pointed out the origins of hysteria as a word and that's no good, so now we're on miseducation. -K)
Thank $DIETY it's over.
This month in the public sphere, we had atrocities like PBS's Autism Now (which ignored autistic adults entirely as not important; only parents matter). We had atrocities like the NHL's Face Off Against Autism. We had the ridiculous Light It Up Blue thing. Blue is totally going to make people more educated, right? Everything was against autism or for awareness.
Still people are settling for 'awareness'. But awareness is not an end unto itself, or shouldn't be. Big Autism is happy if people are 'aware' that their tragedified version autism exists-that brings donations for cure research. I hypothesize that Big Autism doesn't want people actually educated on autism, for then they may determine that supports, not cure, are what is needed and what is ethical to fund.
In my real life, awareness has done nothing but harm this year. STOP telling me I am broken. STOP telling me that I am an exception, I'm not. I am not special in the autistic world, not really. We are all unique and yet we all share so much.
In my real life, "awareness" is leading to a teacher trying to force me out of a class. I have a 4.0 GPA, am a former high level athlete, and he is afraid I cannot handle rock climbing, because of "awareness". The fight I am forced into because of "awareness" is not something I have the bandwidth for, yet here I am doing it. I will probably collapse from burnout before it is over, as I am running on fumes and stubbornness right now.
Awareness doesn't cut it in 2011. It won't cut it in 2012. Educate people or shut the hell up-awareness as your whole goal does not help us. It hurts us. And contrary to what you think, you are hurting really real people with the fallout from your scare tactics.
Thank $DIETY it's over.
This month in the public sphere, we had atrocities like PBS's Autism Now (which ignored autistic adults entirely as not important; only parents matter). We had atrocities like the NHL's Face Off Against Autism. We had the ridiculous Light It Up Blue thing. Blue is totally going to make people more educated, right? Everything was against autism or for awareness.
Still people are settling for 'awareness'. But awareness is not an end unto itself, or shouldn't be. Big Autism is happy if people are 'aware' that their tragedified version autism exists-that brings donations for cure research. I hypothesize that Big Autism doesn't want people actually educated on autism, for then they may determine that supports, not cure, are what is needed and what is ethical to fund.
In my real life, awareness has done nothing but harm this year. STOP telling me I am broken. STOP telling me that I am an exception, I'm not. I am not special in the autistic world, not really. We are all unique and yet we all share so much.
In my real life, "awareness" is leading to a teacher trying to force me out of a class. I have a 4.0 GPA, am a former high level athlete, and he is afraid I cannot handle rock climbing, because of "awareness". The fight I am forced into because of "awareness" is not something I have the bandwidth for, yet here I am doing it. I will probably collapse from burnout before it is over, as I am running on fumes and stubbornness right now.
Awareness doesn't cut it in 2011. It won't cut it in 2012. Educate people or shut the hell up-awareness as your whole goal does not help us. It hurts us. And contrary to what you think, you are hurting really real people with the fallout from your scare tactics.
Sunday, April 17, 2011
Being Autistic Is...
In the style of What Epilepsy Is. Like that piece, this one is more about how other people react to autism than what autism itself causes. I'd think that'd be apparent, but one never knows.
Being autistic is being judged.
Being autistic is being yelled at for existing.
Being autistic is being subjected to verbal, physical and emotional abuse for existing.
Being autistic is being at high risk of being killed for existing.
Being autistic is knowing damn well that anyone who hurts or kills you will get away with it.
Being autistic is knowing that the person who hurts or kills you will be a folk hero.
Being autistic is being looked on as a tragedy.
Being autistic is teachers doing everything they can think of, legal and illegal, to make you not their problem.
Being autistic is people being scared of you.
Being autistic is people being scared of you when they haven't even met you.
Being autistic is being looked on as an emergency.
Being autistic is being told that your way of seeing the world is objectively wrong.
Being autistic is being told you have no empathy.
Being autistic is being told that by people who make no effort to see things your way.
Being autistic is being told that your very existence is a danger to you and to others.
Being autistic is being called a burden.
Being autistic is knowing you aren't going to get acceptable medical care.
Being autistic is being assumed incapable of having friends.
Being autistic is people talking to your friends instead of you.
Being autistic is people assuming you are incapable of understanding things.
Being autistic is people hoping you are incapable of understanding things so they can justify excluding you.
Being autistic is people excluding you anyway, because 'autism' is reason enough.
Being autistic is fearing for your job when people find out.
Being autistic is being erased-no one is like you in the media.
Being autistic is people disbelieving you are what you are because there are no autistic adults in the media.
Being autistic is having both your strengths and your weaknesses weaponized against you.
Being autistic is having to qualify everything you say as only applying to you.
Being autistic is doing exactly that, and still having people attack you for 'assuming you speak for [my] child."
Being autistic is doing exactly that and people still demanding you play universal translator.
Being autistic is those same people yelling at you when you tell them something they don't want to hear.
Being autistic is having very personal details of your life demanded of you.
Being autistic is being called 'tantrumming' when you don't answer said invasive questions.
Being autistic is giving 95-97% in every social interaction.
Being autistic is knowing that others resent giving even 3%.
Being autistic is every socialization problem being your fault, for you are the broken one.
Being autistic is knowing that the bullying you are subject to is socially sanctioned and celebrated.
Being autistic is knowing that your successes are resented.
Being autistic is charities that are supposed to help you trying to eliminate you.
Being autistic is being physically attacked at those charities' events for daring to show up.
Being autistic is being assumed to be the aggressor in those and any other situation.
Being autistic is having quack cures constantly shoved down your throat.
Being autistic is knowing that no one wants a child or friend like you.
Being autistic is knowing that if you point out how society treats you, people are going to challenge your anti cure status as disingenuous.
Being autistic is knowing that if you demand equal treatment, people will challenge your support needs.
Being autistic is knowing there is no way to win anything, ever.
Being autistic is fighting to be seen as an actual person.
Being autistic is knowing that fight will not be won in your lifetime.
Being autistic is fighting that fight anyway.
Tuesday, April 5, 2011
Be aware of THIS
This was my 2008 Autism Awareness Month post.
Ah April, the true cruelest month, at least if you are autistic or sympathetic towards autistics and what we really think. "Autism Awareness Month", they call it. Awareness of what? It seems more and more to be awareness that many parents feel cheated because they didn't get the typical or supertypical child they feel they so richly deserved, a month of awareness of how the PARENTS feel they suffer, a month of awareness of all the things they are putting the child through to put themselves out of their misery. Quackery awareness month, even, but of course no one will come out and call a spade an effing shovel because autistic people don't count in this society. That's right, it's a f*ing shovel.
With that in mind in this vomitous puzzle piece bedecked month, here are some things to keep in mind if you intend to "do something for awareness" or are bombarded by people who are (or are asking you why you aren't):
1. "Awareness" is not the same thing as information. I can get 10,000 people to wear a puzzle ribbon pretty easily but that doesn't mean they know a blessed thing about autism. "Awareness" is crap.
2. "Awareness" is a vague goal, in addition to being crap. Awareness of what? Awareness of what autism IS? No, no one exactly knows and that's too much like information. Awareness that adults need services too? No, we don't look cute on their posters. Awareness that autism is more than just people smearing shit and banging their heads? No, that makes us sound too much like people. Awareness that many parents think that ohnoesvaxxeenzeetbabeez and they need to follow their GooglePhD protocol to rescue them and need YOUR MONEY to do it? That particular faction shouts the loudest. Note how few autistic people are served by "awareness".
3. Please be AWARE that autistic people are just that, PEOPLE. We don't need the dehumanization that nearly invariably comes with the "human interest" stories. Even if we don't talk, we can hear and pick up on the attitude that exudes from these pieces.
4. Please also be AWARE that we are AWARE of autism year round, and thus don't necessarily feel the need to do more than we do every day-namely, being ourselves. Conversely, if other people happen to notice us being ourselves more during April, that isn't necessarily us "acting out", but so called awareness making people more aware or self conscious or whatever. The rest of the world can suck it up and deal.
5. Consider that we may not want to read every article on autism, go to every (or even ANY) autism event, or watch every program. See dehumanizing, above. This holds especially true for anti cure folks and those of us who have more than had our fill of the dehumanizing vomitous pity party garbage.
6. Be AWARE of not just the "valiant struggling parents", but also the children and adults who are doing well, the ones who aren't doing well, and the ones who are doing what THEY consider well and are happy.
7. Be especially AWARE of the autistics who's parents, caregivers, and others bought into their own self pity and have done terrible, often irreversible things to them. NEVER EVER forget those who are no longer with us, for the crime of being autistic.
I really hate Autism Awareness Month. For my part, I will be being myself and perhaps breaking out a couple of my more pointed neurodiversity shirts. That's about it. I don't do big bursts of awareness.
Ah April, the true cruelest month, at least if you are autistic or sympathetic towards autistics and what we really think. "Autism Awareness Month", they call it. Awareness of what? It seems more and more to be awareness that many parents feel cheated because they didn't get the typical or supertypical child they feel they so richly deserved, a month of awareness of how the PARENTS feel they suffer, a month of awareness of all the things they are putting the child through to put themselves out of their misery. Quackery awareness month, even, but of course no one will come out and call a spade an effing shovel because autistic people don't count in this society. That's right, it's a f*ing shovel.
With that in mind in this vomitous puzzle piece bedecked month, here are some things to keep in mind if you intend to "do something for awareness" or are bombarded by people who are (or are asking you why you aren't):
1. "Awareness" is not the same thing as information. I can get 10,000 people to wear a puzzle ribbon pretty easily but that doesn't mean they know a blessed thing about autism. "Awareness" is crap.
2. "Awareness" is a vague goal, in addition to being crap. Awareness of what? Awareness of what autism IS? No, no one exactly knows and that's too much like information. Awareness that adults need services too? No, we don't look cute on their posters. Awareness that autism is more than just people smearing shit and banging their heads? No, that makes us sound too much like people. Awareness that many parents think that ohnoesvaxxeenzeetbabeez and they need to follow their GooglePhD protocol to rescue them and need YOUR MONEY to do it? That particular faction shouts the loudest. Note how few autistic people are served by "awareness".
3. Please be AWARE that autistic people are just that, PEOPLE. We don't need the dehumanization that nearly invariably comes with the "human interest" stories. Even if we don't talk, we can hear and pick up on the attitude that exudes from these pieces.
4. Please also be AWARE that we are AWARE of autism year round, and thus don't necessarily feel the need to do more than we do every day-namely, being ourselves. Conversely, if other people happen to notice us being ourselves more during April, that isn't necessarily us "acting out", but so called awareness making people more aware or self conscious or whatever. The rest of the world can suck it up and deal.
5. Consider that we may not want to read every article on autism, go to every (or even ANY) autism event, or watch every program. See dehumanizing, above. This holds especially true for anti cure folks and those of us who have more than had our fill of the dehumanizing vomitous pity party garbage.
6. Be AWARE of not just the "valiant struggling parents", but also the children and adults who are doing well, the ones who aren't doing well, and the ones who are doing what THEY consider well and are happy.
7. Be especially AWARE of the autistics who's parents, caregivers, and others bought into their own self pity and have done terrible, often irreversible things to them. NEVER EVER forget those who are no longer with us, for the crime of being autistic.
I really hate Autism Awareness Month. For my part, I will be being myself and perhaps breaking out a couple of my more pointed neurodiversity shirts. That's about it. I don't do big bursts of awareness.
Alternative Autism Awareness
This is a repost from April 2006. It's one of the first blog posts I ever wrote ever.
Autism Awareness Month?
Or is it "Fundraise for cash to get rid of autistics month"? Anyone who isn't AWARE by now lives under a rock. So. What do we do about it?
I propose an alternative way of celebrating. Forget the fundraisers. NAAR, CAN, DAN!, MOMA, AutismWeeps, all those organizations can piss off. Let's make people REALLY aware of autism.
When April rolls around, I make a point of stimming in public. A LOT. Not hiding the lack of eye contact. Wearing shirts that I made myself and the one I have from ANI that have autism-positive wording. I've been known to make people "talk" to me in writing. Sensory simulations for NTs, done well, will make them aware all right, but it's important to emphasize that it's the world's turn to change, not ours. We've adapted to their world since the beginning.
If I could get the gig, I'd talk to school kids about autism and how it isn't bad, just different. Get them while they're young. Teaching autistics about their unique brains is another one I want to do on a larger scale. We need more "unique", "talented", "what a great kid!" and less "emergency," "epidemic," "tsunami" language.
The most important thing isn't getting rid of the ghastly puzzle ribbon (though I sure wish we could!). It is making people aware of what we are good at, as a group and individually, instead of just where our weak spots are. Educating people that being autistic is OK. Even being nonverbal is OK (alternative communication anyone?). Teaching them that cure isn't the answer, but instead meeting us halfway. Teaching them that abuse isn't necessary to for us to learn skills.
We don't need Autism Awareness Month. We need Autism EDUCATION Month. Educating educators, parents, other professionals, random kids and adults in public, and educating OURSELVES. This is what we should be doing. If only the big organizations could see it...
Autism Awareness Month?
Or is it "Fundraise for cash to get rid of autistics month"? Anyone who isn't AWARE by now lives under a rock. So. What do we do about it?
I propose an alternative way of celebrating. Forget the fundraisers. NAAR, CAN, DAN!, MOMA, AutismWeeps, all those organizations can piss off. Let's make people REALLY aware of autism.
When April rolls around, I make a point of stimming in public. A LOT. Not hiding the lack of eye contact. Wearing shirts that I made myself and the one I have from ANI that have autism-positive wording. I've been known to make people "talk" to me in writing. Sensory simulations for NTs, done well, will make them aware all right, but it's important to emphasize that it's the world's turn to change, not ours. We've adapted to their world since the beginning.
If I could get the gig, I'd talk to school kids about autism and how it isn't bad, just different. Get them while they're young. Teaching autistics about their unique brains is another one I want to do on a larger scale. We need more "unique", "talented", "what a great kid!" and less "emergency," "epidemic," "tsunami" language.
The most important thing isn't getting rid of the ghastly puzzle ribbon (though I sure wish we could!). It is making people aware of what we are good at, as a group and individually, instead of just where our weak spots are. Educating people that being autistic is OK. Even being nonverbal is OK (alternative communication anyone?). Teaching them that cure isn't the answer, but instead meeting us halfway. Teaching them that abuse isn't necessary to for us to learn skills.
We don't need Autism Awareness Month. We need Autism EDUCATION Month. Educating educators, parents, other professionals, random kids and adults in public, and educating OURSELVES. This is what we should be doing. If only the big organizations could see it...
Saturday, April 2, 2011
Loving Lamposts
"He knows he used to have autism and that makes him sad."
This statement in the documentary Loving Lampposts has been haunting me. It is among the most tragic sentiments I've ever heard. My heart aches for that child-not because he 'had' autism, but because who he is is seen as shameful. His brother was described as "having some of the same thought processes as autistic children...but if anything, he's gifted."
And attitudes like that, attitudes that autism is a horrorshow and we're all doomed to utter incompetence, is why Loving Lammposts gets happy flappies from me.
Why?
This documentary leaps in where angels fear to tread: Todd Drezner interviewed people on all fronts of the autism wars. He talked to Jenny McCarthy. He talked to people selling quack treatments. He talked to cure-oriented parents buying those treatments. He talked to true believers in the vaccine hypothesis. He talked to scientists, experts, and 'experts.' He talked to acceptance-focused parents. And he talked to autistics.
Representing all factions in the often heated discussion about autism is no easy task. How can it be, when one group is convinced another is malignantly misguided, and another is convinced that their opposition wants their kids to fester, and more people are convinced an autistic isn't an autistic if they have an opinion on autism? It's hard enough to wrap your head around the idea-now try presenting all viewpoints in a respectful manner in a fairly short documentary. Yeah, like that's possible.
Except apparently it is, because Loving Lampposts is exactly that. Everyone has their say. Even we have our say, which doesn't happen in the autism world much.
Through interviews, Drezner put human faces to all the views on autism. That's something that gets lost in the heat around autism-that everyone involved is a human. The parents who are frantic to fix their 'broken' kid are human. Those kids? Also human. The parents who are striving not to fix but understand? So human that I wanted to reach out and give some hugs. And their children? And the autistic adults? Three dimensional really real people.
I've been anticipating this documentary since I met the production crew at AutCom in 2007. It was worth the wait-I've been recommending it to everyone who wants to know about the autistic community, the autism communities, and their relationships to each other.
Loving Lampposts is a slice of getting it that exceeded my expectations. A++, would watch again (and again...and again...and again).
This statement in the documentary Loving Lampposts has been haunting me. It is among the most tragic sentiments I've ever heard. My heart aches for that child-not because he 'had' autism, but because who he is is seen as shameful. His brother was described as "having some of the same thought processes as autistic children...but if anything, he's gifted."
And attitudes like that, attitudes that autism is a horrorshow and we're all doomed to utter incompetence, is why Loving Lammposts gets happy flappies from me.
Why?
This documentary leaps in where angels fear to tread: Todd Drezner interviewed people on all fronts of the autism wars. He talked to Jenny McCarthy. He talked to people selling quack treatments. He talked to cure-oriented parents buying those treatments. He talked to true believers in the vaccine hypothesis. He talked to scientists, experts, and 'experts.' He talked to acceptance-focused parents. And he talked to autistics.
Representing all factions in the often heated discussion about autism is no easy task. How can it be, when one group is convinced another is malignantly misguided, and another is convinced that their opposition wants their kids to fester, and more people are convinced an autistic isn't an autistic if they have an opinion on autism? It's hard enough to wrap your head around the idea-now try presenting all viewpoints in a respectful manner in a fairly short documentary. Yeah, like that's possible.
Except apparently it is, because Loving Lampposts is exactly that. Everyone has their say. Even we have our say, which doesn't happen in the autism world much.
Through interviews, Drezner put human faces to all the views on autism. That's something that gets lost in the heat around autism-that everyone involved is a human. The parents who are frantic to fix their 'broken' kid are human. Those kids? Also human. The parents who are striving not to fix but understand? So human that I wanted to reach out and give some hugs. And their children? And the autistic adults? Three dimensional really real people.
I've been anticipating this documentary since I met the production crew at AutCom in 2007. It was worth the wait-I've been recommending it to everyone who wants to know about the autistic community, the autism communities, and their relationships to each other.
Loving Lampposts is a slice of getting it that exceeded my expectations. A++, would watch again (and again...and again...and again).
Thursday, March 10, 2011
Thoughts for Budding Advocates
I've been around advocacy for a while-long enough that I'm baffled that people don't know what neurodiversity is & can't believe that people don't know why r*tarded is offensive, but not so long that I really expect to be 'known'. I've been called a firecracker, a force of nature, & the irresistible force meeting an immovable object-those are my qualifications to write on the matter.
This is directed at those of you who are just finding a passion & something worth speaking out about.
Know that it isn't always easy. Know that it gets harder before it gets easier, & that's not necessarily change, but you getting used to the work.
Know that people tend to hold to their prejudices. They may not take kindly to their behavior being called out. It's up to you whether or not that's a part of the battle you wish to take on-I do, but I'm not going to think less of you if it's not something you're taking on at this time. Do what you can do, y'know?
Know that as you get involved in causes-particularly social justice sorts of causes-you'll pick up on more things as unjust. You can try to save the world, but you'll burn out. We all do what we can, right?
Don't be afraid to get angry. Effective activism and polite activism are mutually exclusive. Harness your anger for what you are trying to accomplish. It's ok to offend people sometimes--they can't be offended if they aren't listening.
If you need to take a break, do it. This isn't always an easy thing, activism. That's why it's best to do what you really mean, what you really believe in.
Other people are fighting your fight too. They're your allies. They may not be your friends, but they are on your side.
Good luck changing the world, even a little.
This is directed at those of you who are just finding a passion & something worth speaking out about.
Know that it isn't always easy. Know that it gets harder before it gets easier, & that's not necessarily change, but you getting used to the work.
Know that people tend to hold to their prejudices. They may not take kindly to their behavior being called out. It's up to you whether or not that's a part of the battle you wish to take on-I do, but I'm not going to think less of you if it's not something you're taking on at this time. Do what you can do, y'know?
Know that as you get involved in causes-particularly social justice sorts of causes-you'll pick up on more things as unjust. You can try to save the world, but you'll burn out. We all do what we can, right?
Don't be afraid to get angry. Effective activism and polite activism are mutually exclusive. Harness your anger for what you are trying to accomplish. It's ok to offend people sometimes--they can't be offended if they aren't listening.
If you need to take a break, do it. This isn't always an easy thing, activism. That's why it's best to do what you really mean, what you really believe in.
Other people are fighting your fight too. They're your allies. They may not be your friends, but they are on your side.
Good luck changing the world, even a little.
Friday, February 4, 2011
Autism Speaks: SHUT UP AND LISTEN
I mean you. Right now.
I protested you. You know damn well I protested you. It's not a secret. I wore a shirt that said "Celebrate Neurodiversity", carried a sign that says "Autism Speaks does not speak for me" with your ugly blue puzzle piece all crossed out, talked to parents about why you are so damn toxic. Does that look like a person who wants anything to do with you?
And then you go and quote me?? In your transition kit??? AND YOU GET THE ATTRIBUTION WRONG??? No, I was not fucking diagnosed at 18. I found out at 18 I'd been diagnosed for-freaking-ever. There's a difference. A substantial one. But hey, any misleading thing to try to shut up autistic adults, right?
Oh and there's the whole "Not asking" thing. I know, it was a publicly available work, but it would have been ethical to ask if you could use it, if the context was correct, if I wanted in any way to be associated with you (which I don't. Except protesting you. I'm ok with that, no matter how many of your supporters tell me to go play in traffic--3 was the count this year. Other obscenities rate much higher).
Shut up and listen: this is more talking about us without us. You can't yank a quote--even a good quote--and get the details about that person wrong and just use it when you know damn well they dislike you and all you stand for intensely. That isn't involving autistics, if that's your excuse. That's more of the same thing we've been getting for years, acknowledging us only when convenient.
Shut the hell up and listen.
Wednesday, November 10, 2010
Epilepsy and Gymnastics
This one is another "in my experience" one. This is in no way shape or form medical advice, and in fact I have met doctors who think that my choice of sport was evidence of a subconscious deathwish.
I've been participating in some form of gymnastics or another for years. I've had epilepsy for years. Most of these years overlap. I've dealt with medication changes, seizure fallout, side effects, and all the other joys while also enjoying a high-flying sport.
My primary form of gymnastics was tumbling and trampoline. My best event was always tumbling because everything is entirely what I can do with my own power. Sometimes my skills were a bit sluggish, but they weren't ever scary or particularly dangerous. Trampoline was my worst because you have to hit the trampoline 10 times and every change in body position or proprioception is magnified by the elasticity of the trampoline. It's also easy to get a little off if you aren't able to focus. Double mini trampoline is only 2 skills, so it was my best when I was sluggy. The worst I experienced with epilepsy meeting tumbling and trampoline was having a partial complex at a meet. I had to withdraw after my coach realized that everything I was doing during warmup was autopilot. I've never had a tonic-clonic while in the air.
I did artistic gymnastics as well. Floor was my best event for much the same reason tumbling was--it's what you can do under your own power--so even when I was a bit wonky, I could make something work. I was very good at beam in practice. At meets or during a medication change, beam went to hell because it's all about precision and attack, which I do not have when my body feels alien. Postictally I was pretty awful at beam, but nowhere near as bad as I could be on vault. Vault involves running as fast as you can at a stationary object and hitting a springboard exactly correctly so you can fly over it. Speed doesn't happen postictally. Visual perception doesn't happen postictally. I know exactly how hard I can run into a vault, and the answer is rib-dislocation-hard. Uneven bars was the hardest for me because being even a little off makes it hard to muscle through things, and every time my body or brain changed I had to completely adjust the timing of moves. It was never a strength problem, just a consistency issue.
I came mightily close to seizures at a couple of artistic meets because of the techno floor music trend, so I did compete while heavily benzodiazepined a few times. Sluggish gymnastics lead to sluggish scores, but I didn't ever get hurt, fortunately.
There were a few things I needed to do to make taking epilepsy to the gym relatively safe. First, I needed to get very familiar with the difference between "aura" and "I need to eat/I'm working too hard/I'm tired/side effects". Second, I needed to disclose to my coaches that I have seizures, what they look like, and what to do if they occur. We needed to discuss a seizure plan, and for a period of time I kept rescue medication in the gym office. Third, during every medication change I had to chart side effects that might matter & we had to adjust expectations during workouts and competitions. For a while I was playing catch-up with private lessons since a particularly hard period made learning anything impossible.
My coaches ended up learning a few of the subtle signs that indicated a seizure was imminent. We had an agreement that they could send me for a snack & ask me to get off the equipment if I was worrying them. If I needed to take a rescue med, it was fine and I didn't need to announce it. Part of our agreement was that I was to wear medical identification at all times gymnastic & I was to carry a seizure protocol card in case they weren't the very first people around if I seized.
There was a lot of planning involved, but I got to do the sport I love in face of prejudices that say I shouldn't have. I still love gymnastics-it makes me feel invincible, like I can fly, and I wouldn't trade that experience for anything.
Sunday, November 7, 2010
First Responders & Me.
One of the topic suggestions I was given was "how to handle any paramedics or police officers who should happen to arrive during a seizure". This is very much a my-preferences entry. Other people will have different protocols. Some of them may even involve not being terrified of first responders and law enforcement and hospitals.
Let's say it's a partial complex seizure, since even the police officers who stop me for Walking While Autistic can manage to not fuck up too badly in face of a generalized tonic clonic. I hope.
So you're walking down the street with me and my eyes go all vacant and I'm doing the hand thing and all I can say is "I dunno". You're not letting me walk into the street, and I appreciate that. You're calm and not making sudden movements or touching me suddenly and anything like that. Then, a wild police officer appears!
He probably addresses me and asks if I'm alright. Assuming he isn't so aggressive I turn and run, the answer will be "I dunno". That's where things get bad for me really quickly. That's when his (or her, but all the ones who stop me for WWA seem to be male, hence the pronoun) cop reflex jumps from 'different' to 'seriously fucked up'.
The single best thing someone can do for me at this point is to tell the officer that I have epilepsy, this is a seizure, everything will be fine as long as no one gets in my face, thank you for your concern. If you can make him go away, so much the better, but I don't know how to make that happen. Getting in my face-which law enforcement officers DO-is just asking for a bad situation. Under no circumstances let him get in my face or touch me. The self preservation reflexes that are still active are the kind of things that get people tazed. I carry identification that say I have epilepsy for a reason, and this is one of them.
Now let's say the cop happens across us walking down the street when I'm postictal. I'm kind of surprised this hasn't happened already, since there comes a point that I am bone-tired but have access to almost-coherent speech. If I don't want to walk, or am disoriented and afraid to walk, I'll whine and that's a whole bag of "that doesn't look right". Tell them that I have epilepsy, I am recovering from a seizure, and I'm probably still pretty disoriented. I don't know if I'd actually talk to them or not at that point, and if I just had a seizure I can only sign (and am probably not so OK with the walking at a normal rate thing. And will pretty certainly flip my shit if someone I don't know gets in my face. Especially if they do so aggressively). I can register that my bracelet may be useful post-seizure, but for some reason officers of the law aren't willing to read them in my experience. If you can get them to understand that yelling at me isn't going to do anything but cause problems, please, please do. Being aggressive doesn't cure epilepsy.
Or. Let's say for some reason a wild paramedic appears! If they have an ambulance, they need to turn that shit off. I have a visceral hatred of loud sirens and of flashing lights, & she's going to have to suck it up and deal. I didn't want them there anyway. I. Do. Not. Want. An. Ambulance. I am not on drugs. I take my medications religiously. I do not like being touched at tickle-pressure, or at all by strangers. Even if I'm still out of it, any poking and prodding she insists on doing, she's going to have to move slowly, explain everything, and keep everything where I can see it. I probably will be uncooperative and resistant or completely passive because I want her to fuck off. If you can get a good samaratin wannabe paramedic to go away, you're my hero.
The generic themes here are get them to go away, I do not want to go to the hospital, their flashy lights can go play in a fire, and I am very particular about how I accept being touched, especially after or during a seizure, and they will do it wrong. Everything goes much more smoothly if intrusive, aggressive people who I don't know just aren't around me-hence my hatred of hospitals. There are too many ways for them to fuck up, and that has lead too many people into injurious or fatal situations. If I'm going to be a statistic, I'm going to be a living statistic, thanks anyway.
Let's say it's a partial complex seizure, since even the police officers who stop me for Walking While Autistic can manage to not fuck up too badly in face of a generalized tonic clonic. I hope.
So you're walking down the street with me and my eyes go all vacant and I'm doing the hand thing and all I can say is "I dunno". You're not letting me walk into the street, and I appreciate that. You're calm and not making sudden movements or touching me suddenly and anything like that. Then, a wild police officer appears!
He probably addresses me and asks if I'm alright. Assuming he isn't so aggressive I turn and run, the answer will be "I dunno". That's where things get bad for me really quickly. That's when his (or her, but all the ones who stop me for WWA seem to be male, hence the pronoun) cop reflex jumps from 'different' to 'seriously fucked up'.
The single best thing someone can do for me at this point is to tell the officer that I have epilepsy, this is a seizure, everything will be fine as long as no one gets in my face, thank you for your concern. If you can make him go away, so much the better, but I don't know how to make that happen. Getting in my face-which law enforcement officers DO-is just asking for a bad situation. Under no circumstances let him get in my face or touch me. The self preservation reflexes that are still active are the kind of things that get people tazed. I carry identification that say I have epilepsy for a reason, and this is one of them.
Now let's say the cop happens across us walking down the street when I'm postictal. I'm kind of surprised this hasn't happened already, since there comes a point that I am bone-tired but have access to almost-coherent speech. If I don't want to walk, or am disoriented and afraid to walk, I'll whine and that's a whole bag of "that doesn't look right". Tell them that I have epilepsy, I am recovering from a seizure, and I'm probably still pretty disoriented. I don't know if I'd actually talk to them or not at that point, and if I just had a seizure I can only sign (and am probably not so OK with the walking at a normal rate thing. And will pretty certainly flip my shit if someone I don't know gets in my face. Especially if they do so aggressively). I can register that my bracelet may be useful post-seizure, but for some reason officers of the law aren't willing to read them in my experience. If you can get them to understand that yelling at me isn't going to do anything but cause problems, please, please do. Being aggressive doesn't cure epilepsy.
Or. Let's say for some reason a wild paramedic appears! If they have an ambulance, they need to turn that shit off. I have a visceral hatred of loud sirens and of flashing lights, & she's going to have to suck it up and deal. I didn't want them there anyway. I. Do. Not. Want. An. Ambulance. I am not on drugs. I take my medications religiously. I do not like being touched at tickle-pressure, or at all by strangers. Even if I'm still out of it, any poking and prodding she insists on doing, she's going to have to move slowly, explain everything, and keep everything where I can see it. I probably will be uncooperative and resistant or completely passive because I want her to fuck off. If you can get a good samaratin wannabe paramedic to go away, you're my hero.
The generic themes here are get them to go away, I do not want to go to the hospital, their flashy lights can go play in a fire, and I am very particular about how I accept being touched, especially after or during a seizure, and they will do it wrong. Everything goes much more smoothly if intrusive, aggressive people who I don't know just aren't around me-hence my hatred of hospitals. There are too many ways for them to fuck up, and that has lead too many people into injurious or fatal situations. If I'm going to be a statistic, I'm going to be a living statistic, thanks anyway.
Tuesday, November 2, 2010
I shouldn't have to beg
I wrote this when I was having Issues with very basic "don't make me seize, 'k?" accommodations. It may be a bit wangsty. Please, give me some suggestions so I don't end up with a month of epilepsy wangst. As is my custom, there is swearing.
Institutionalized ableism becomes clear in a number of places and situations. Where it hits hardest, most gut-wrenchingly, is in asking for simple, by which I mean no-effort, accommodations and consideration for disabilities that aren't easily seen.
Yeah, I know, not having a strobe light everywhere is a fucking drag.I took up the hobbies I did because there shouldn't be any there. It doesn't matter that "you didn't know". A flashing light is a dangerous thing to have in this setting-people are moving in a number of directions fairly fast! No, I won't be nice or apologetic about stating my needs. It's my health vs your ego & your "but I dunwanna". Health wins. Access wins.
So many simple requests come down to need vs ego. Yeah, I know, your feelings are hurt that you aren't funny, you're actually kind of a douchebag, and I just don't have it in me to sugarcoat. I'm not going to. This isn't a preference here. This is a need. Were it just a preference, there'd be a lot less panic involved.
Yeah, panic. When you make me beg for a place to be relatively safe, safe as in non seizure inducing (and we all know I deal with audiogenic issues in my own way), it makes me panic. The power dynamic of begging means you can say no. It means that you, should you deign from your place of privilege to say yes, have a hold on me. And it's not like knowing who I have a crush on or the inane things I did when I was 10-it means you can revoke my ability to safely navigate a part of my world at any time, for any reason or none. A presumably public part of my world.
That's not how it should be. Access should be a right, not a privilege to be revoked at any time, to be whittled away for reasons and justifications that come down to "it's hard". Disabled personhood, epileptic personhood, autistic personhood is still personhood. My access matters just as much as the next person's.
I can't be silent on this as my world threatens to get narrower & narrower. I'm one of those uppity bad disabled people who won't stay silent and in my house. I don't know my place, you say. I defy notions of where my place is. My place is out here living my life to the fullest.
But the panic takes its toll. The seizures take their toll. The nastiness from others, that takes its toll too. By my mid 20s I've been threatened with a knife, I've had my skull bashed, and I've gotten more death threats than I care to count for the crime of wanting a life-an accessable life. If I'm abrasive about my needs, certainly nothing justifies assault with a deadly weapon, when I was 19 or now.
Stop narrowing my world. You won't even miss the flashies. You won't even notice other access features I or other people ask for. You may find they make your life easier too. You may find your world widened. But everyone suffers from the culture of silence and exclusion.
Monday, November 1, 2010
Inaugural Post: Autistics Speak Day
I believe AEIOU had the best of intentions. I really do.
The road to hell, however, is paved with said good intentions. Good intentions are behind many, if not most, efforts "on behalf of" a group that's frequently othered. Autistics in many way are the ultimate other--our nonverbal cues are different, our use of language is often different, our sensory processing is different and often inconsistent, we look like everyone else and yet are so fundamentally NOT that many of us are pretty squarely in the uncanny valley. People just don't know what to think of us, but they don't see us as 'same' enough to just ask us.
As an autistic, I implore you: Ask us what we want. Ask us what we need. Ask us what it is to be us. I can't answer "what's it like to be autistic", because I have been nothing else, but I can tell you what I am experiencing. I can tell you that I cannot tell the difference between pain and nausea consistently, I can tell you that I discovered dizziness recently and it fills me with as much joy as flying, I can tell you what my eyes see when I look where you're looking, I can tell you what your words mean to me.
I can tell you what it is to be constantly regarded as broken. I can tell you what general society does to reinforce this. I can tell you what it feels like to be assumed incompetent in areas where I am brilliant, and I can tell you what it feels like to be assumed brilliant in areas in which I am completely incompetent. I can tell you what your assumptions do to me. I may not get the hidden meanings you are intending, but I can tell you what hidden messages you reveal.
I can tell you what it means when I stare at the lights. I can tell you what it means when I jump up and down. I can tell you what that squeal meant. I can tell you why I sat down in the middle of the street. I can tell you what my behavior means. I can tell you that all that behavior, it's communication of some kind. It all has meaning.
And I can tell you absolutely that my communication issues are not just a failure on my side. Communication is a process in which people both send and receive messages. I send messages. I send a lot of messages. They may not all be in your language of saying one thing and meaning something else as indicated by body language and tone of voice, but I send messages. Even when I'm so postictal I do not remember where I am or how I got there, I am sending messages and trying to receive yours. Even when I am so fried that words just aren't happening, there are messages.
The message that the communication shutdown and similar initiatives gives me is one of profound misunderstanding of what it is to be in my brain and brains like mine. Initiatives like that say to me that they believe the communication issue is all my problem. But it isn't. Not speaking isn't the same as not listening. Not speaking isn't the same as not communicating.
If you really want to know what it is to be autistic, don't take a break from Farmville. No one even cares about Farmville. Ask an autistic specific questions about what it is to be us. Spend a day having everything you say challenged because you aren't the right kind of...something to matter. Spend a day experiencing outside of the box.
Instead of shutting off communication, open up the lines with an autistic. Receive our messages instead of assuming. That's way more for autistics than a facebook charity app ever could be.
The road to hell, however, is paved with said good intentions. Good intentions are behind many, if not most, efforts "on behalf of" a group that's frequently othered. Autistics in many way are the ultimate other--our nonverbal cues are different, our use of language is often different, our sensory processing is different and often inconsistent, we look like everyone else and yet are so fundamentally NOT that many of us are pretty squarely in the uncanny valley. People just don't know what to think of us, but they don't see us as 'same' enough to just ask us.
As an autistic, I implore you: Ask us what we want. Ask us what we need. Ask us what it is to be us. I can't answer "what's it like to be autistic", because I have been nothing else, but I can tell you what I am experiencing. I can tell you that I cannot tell the difference between pain and nausea consistently, I can tell you that I discovered dizziness recently and it fills me with as much joy as flying, I can tell you what my eyes see when I look where you're looking, I can tell you what your words mean to me.
I can tell you what it is to be constantly regarded as broken. I can tell you what general society does to reinforce this. I can tell you what it feels like to be assumed incompetent in areas where I am brilliant, and I can tell you what it feels like to be assumed brilliant in areas in which I am completely incompetent. I can tell you what your assumptions do to me. I may not get the hidden meanings you are intending, but I can tell you what hidden messages you reveal.
I can tell you what it means when I stare at the lights. I can tell you what it means when I jump up and down. I can tell you what that squeal meant. I can tell you why I sat down in the middle of the street. I can tell you what my behavior means. I can tell you that all that behavior, it's communication of some kind. It all has meaning.
And I can tell you absolutely that my communication issues are not just a failure on my side. Communication is a process in which people both send and receive messages. I send messages. I send a lot of messages. They may not all be in your language of saying one thing and meaning something else as indicated by body language and tone of voice, but I send messages. Even when I'm so postictal I do not remember where I am or how I got there, I am sending messages and trying to receive yours. Even when I am so fried that words just aren't happening, there are messages.
The message that the communication shutdown and similar initiatives gives me is one of profound misunderstanding of what it is to be in my brain and brains like mine. Initiatives like that say to me that they believe the communication issue is all my problem. But it isn't. Not speaking isn't the same as not listening. Not speaking isn't the same as not communicating.
If you really want to know what it is to be autistic, don't take a break from Farmville. No one even cares about Farmville. Ask an autistic specific questions about what it is to be us. Spend a day having everything you say challenged because you aren't the right kind of...something to matter. Spend a day experiencing outside of the box.
Instead of shutting off communication, open up the lines with an autistic. Receive our messages instead of assuming. That's way more for autistics than a facebook charity app ever could be.
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