Awareness kills.

Yesterday they released the news of another child killed because of the ableism that the rhetoric of tragedy fosters.

Daniel Corby, age 4, was drowned by his mother in San Diego. Already people, including the media, are leaping to say that autism is so hard, no wonder she went over the edge. No. No. No. You don't say that. There is no excuse to kill people.

And this is what awareness does. The dominant narrative is that of hopelessness. The dominant narrative is of isolation and despair. The dominant narrative is that we are perpetual burdens, never to grow or be anything but 100% dependent. The dominant narrative is of tragically unhappy lives.

Awareness is wrong. We are, on the whole, not unhappy. We do not need the terror around how many of us there are. We do not benefit in any way from information that makes us sound like scary, alien beings. And we do not benefit from being seen as less than human, as things to be endured rather than people to be embrace.

Daniel could have had any of a number of futures. Now he has none of them. This is unacceptable.

Stop killing us.

You keep killing us, and I am PISSED.

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.

Cure is an inane concept.

At least, it is when it comes to most of what I've got.

It means "restore health; recovery from disease". That assumes that we have a disease. It assumes that we are unhealthy. And, ok, there are a few labels I carry that could be seen that way. But my neurology isn't unhealthy or diseased. It's different.

But then people talk about 'finding a cure' and that is just such a simplistic idea. It sounds like they're expecting a compound to be discovered or developed that ennormalfies people. It doesn't work that way. The rainforest doesn't have a puzzle piece printed tree waiting for the leaves to be made into an autism-be-gone pill. It isn't that simple.

Something that would cure all the autistic people living right now doesn't exist. It cannot exist, not in the magic elixir form. Autism does not work that way. As much as I would love it to, neither does epilepsy.

"Curing" a neurodevelopmental condition would involve a series of risky and complicated procedures. There's a partial fix for some forms of epilepsy, and that's risky and complicated-they find the place where seizures originate, do a bunch of tests to map vital systems, and they remove the recalcitrant tissue. That's a complicated thing to do.

Autism would be more complicated. There's so much more directly effected in the brain. They'd have to rewire everything, then teach the victims patients how to use their own mind completely from scratch. Doing it all in one go would be more than a mind could handle, I think-can you imagine culture shock related to your own cognition? Because that's what you'd be dealing with. Totally changing someone like that could have quite the devastating consequences-depression, anxiety, suicidal behavior, whatever they call that feeling of alienation from yourself...

You can't just change someone's operating system and expect it to work. Autistic traits are part of the very fabric of our being, if you had these procedures and your victim patient survived, no one would recognize them. They'd be a stranger and an outsider in their own body.

This started out as being "THERE IS NO AUTISM BE GONE PILL IN THE FOREST" and kind of went on a tangent.

Being me can be difficult sometimes, but I know me. There's no guarantee that the hypothetical invader would be an easier person to be. Changing the entirety of who someone is cannot be ok. Ameliorate the difficulties, but don't try to do that by erasing all of us.

The Privilege of Ignorance

Something people who talk about privilege don't talk about much:

Part of your majority privilege is the luxury of being ignorant.

I have heard so many times "I didn't know strobe lights were problematic". Really? REALLY?? I do not understand, what with the signs and warnings on things and the hurrhurrseizure jokes that people who wouldn't know a seizure if it bit them on the ass make. People who don't have epilepsy don't have to worry about it, even a little, so they make their inane jokes and gloss over the warnings and notifications. They don't realize how many lights are everywhere. A friend even said to me this week that he didn't realize how much flashy crap is everywhere until we started hanging out. Most people have the luxury of not giving a shit.

People are blissfully unaware of noises. They are blissfully unaware of smells. Oh so many people are blissfully unaware that their behavior and language marginalizes people. I had a dean at a college tell me she didn't know what erasing a person is while she was doing it. People have the privilege of not knowing the first thing about a person or group of people while simultaneously treating them as less-than. Many men are utterly unaware that being a woman is sometimes absolutely terrifying. People without disabilities are utterly unaware that being a disabled woman is even more so. They don't have to know.

I recognize there are things I have the privilege of ignorance about as well. I do not have to be aware of sidewalks and curb cuts and such, for I do not need a mobility aid. I know these things are problematic, but I don't have to think about them. There are a number of aspects of GLBTQ existence that I am unaware of because they aren't part of my every day life. I recognize that I am privileged in this way, that a lot of people do have to take a whole lot of other factors into mind, but that doesn't mean I know what they are.

In short, ignorance of other people's daily existence comes with privilege. It isn't someone's fault that they have that privilege, but it is their fault if they refuse to acknowledge it.

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.

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.

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...

Punishment for "Coping Well"

If you have a disability, especially one that isn't visible, there's this really strange phenomenon. Apparently one is supposed to live their whole life afraid & dependent & limiting oneself.

If you don't, you are said to be "coping well" & therefore able to do without having your support needs met. A few examples for you:

There is a woman who attends a certain autism group that I attend as well. She is MEAN. She is a bully, she has no regard for anyone's needs but her own, she breaks the confidentiality rules (as loudly as possible. In downtown Portland. My Deaf friend could hear her. Said Deaf friend does not use hearing aids or anything of that sort). She is manipulative and sneaky and seriously, she's mean.

Get pushed too far by this sort of person, stand up for yourself, get yelled at. Why? Apparently because I am smarter than she is, or at least more articulate. Fun fact: I have intense sensory issues, I do not tolerate bullying, and once you push my (fairly well known) buttons to hard, I will absolutely tell you exactly why you are wrong, and quite possibly what I think of you. And you deserve it! Bullying continues & is taken to other venues. Mention it to the powers that are in the particular autism group. Get yelled at! Fuck yeah, enablers! Being smart does NOT mean I am not autistic, with real support needs, with real needs to not be bullied by people who are supposedly my own, with real needs to not have it overlooked & tacitly supported because I am superficially a bit more "normal" (here read this as: I give a flying fajita about other people & I don't SHOUT EVERYTHING I SAY EVER).

I've been sitting on that one for over a year, but it never fails to piss me off. Ever. How dare I be the non-shithead kind of autistic??

Or epilepsy! Yes, I do stuff that could be seen as risky-gymnastics, I go places alone, stuff like that. So then when there is a real access need, it can't be that important because I take care of myself pretty well? NO! I can navigate my environment because I make eliminating changeable triggers a priority. It's a priority so that it's safe for me to go places. What is so difficult to understand about this? I mean, besides the "legal obligation" part, or the "don't be an asshole" bit?

And if you have a disability, and you disagree with what Tragedy Model pushers say, if you do anything independantly you must be full of shit. No. I'm living my life. There is a difference, and fuck you right to hell for putting us all in a place where we can't win.

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.