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.
Showing posts with label autism society. Show all posts
Showing posts with label autism society. Show all posts
Tuesday, April 5, 2011
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...
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.
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