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.

Why I am not going to Portland Lindy Exchange

I swing dance (lindy hop). I'm actually a pretty good dancer, if I listen to other people. And I enjoy dancing. So why the hell am I refusing to go to the biggest dance event in my own city?

Because they fucking refuse to even pretend to follow the ADA, that's why. Last year's was the absolute worst weekend of my life--and I have been abused & mistreated & sick in ways that mean I have had some fucking bad weekends, the kind of fucking bad weekends that most people cannot imagine. Bad enough that I am willing to name names and if people's feelings are hurt, they can climb a rope and let go, because 'hurt feelings' are not remotely in the same range.

I refuse to spend that kind of money to be in that kind of danger.

Last year, the Portland Lindy Society's lawyer called me & we had some discussions. She isn't an ADA lawyer, but since she had been to law school she knew what the ADA is and how to read a law (for those who don't know, the ADA is pretty fucking simple to understand anyway). The agreement was that they'd say no flash photography & that they'd have an event photographer who was supposed to be competent enough to not strobe all over & that he'd avoid me. I'm not exactly hard to pick out of a crowd, either; I wear blue glasses-NOT COMMON.

Let me tell you now about Portland Lindy Society's photographer. His name is Evrim Icoz. He is a sack of shit who should never work again. Ever. Hence the name dropping

This guy who knew damn well he was supposed to not use multiflash & was supposed to avoid the petite brunette in the blue glasses & Chun Li buns was always using multiflash within 8 feet of me at a rapid fire pace-not the exact opposite of what Ivy, the lawyer, promised at allllll. So, not knowing this man is an abusive sack of shit, I ask him to not flash in my vicinity, because it's like being stuck in a godsdamned strobelight and that's not acceptable, nor is it within the agreement Portland Lindy Society made with me. And he flashes his flash directly in my face because that's obviously what a professional does in this situation. You don't say "my bad", you don't go photograph somewhere else, you flash a strobe light right in the face of someone who has photosensitive epilepsy that you already knew about! Ethics & professional code say so!

So this guy, Evrim Icoz (seriously, I hope search engines grab this shit because it is not acceptable), he starts yelling at me. I'm kind of already about to seize, it is going to happen, & he follows me into the entryway while I'm looking for someone who has some power-a PLS person, the lawyer, someone. This guy is yelling at me that he doesn't know what the hell is wrong with me, I am a crazy bitch, he hopes I die in hell. You already know what's wrong with me, you sack of crap, and that is why you are supposed to change your behavior. Bet you feel like a big man now, yelling at a disabled woman to die in hell. Oh yeah. Such professional behavior.

If PLS were decent people, they'd have told Evrim he had to leave. Are they decent people? No. No they are not.

On the advice of their lawyer they gave my money back & 'allowed' me to stay. It's the least you can do when the event photographer sends you into a meltdown and a 5 seizure cluster, right? Please please please please don't sue us, Miss K. Here's your money! Keep your wristband! Just oh god oh god don't go to the media! I know our photographer is an abusive dangerous man, but please please please stay we'll be better!

Yeah. So fucking much better. Ask me about the next night!

The dance the next night was extremely crowded. Of course it was-it's a big dance event where the people who think they're hot shit from other dance places come to dance with the people who think they're hot shit from other other dance places, and we mere mortals if they don't realize we're mere mortals. Ok, that's unfair, some people from other places are delightful. Just not the ones who think they're Eris's gift to dancing. Anyway, not the point.

This Evrim guy is there again, strobing again! The lawyer and the powers that are at PLS assured me it was taken care of. They're liars. The guy is, again, suspiciously close to me with his deadly weapon at all times. Then he happens to be close to one of my friends, who ended up stuck with my seizure cluster (poor guy, stuck with all the seizure clusters that Portland dance people cause by refusing to make the simple ADA adjustment of banning flash photography. I'm whiny after a seizure & not exactly cooperative). Evrim decided this was a good time to, in the name of professionalism, shove my friend & try to start a physical fight. Not just any physical fight, but one in the middle of an extremely crowded dance floor. The bit where he told my friend to die in hell was an extra bit of acting like an adult paid to be there, in my opinion.

Then my friend tries, again, to talk to someone from PLS. I'm well on my way back to seizureville-the total for the weekend was over 30 as I recall-and this is unacceptable. The woman who he finds first (maybe not first. Maybe who he was told to talk to. I don't know. Most of my memories of that weekend are snapshot memories & waking up somewhere with a hangover-except I don't drink) decides that the appropriate reaction to having the professionalism of their photographer challenged is to start hyperventilating and saying she was convinced friend was going to hit her. That falls in the category of things I can never ever see happening. Anyway.

After this woman gets herself together, complete with guilt trip & me taking a few trips to Planet Not There, she does...nothing! She says she'll talk to him! She doesn't! He's paid to be there, you see! They can't do anything about him trying to start a physical fight on the dance floor or attacking a paying customer! Because she can't! Because not killing me isn't anywhere near as important as some fucking photographs!

We went and talked to the lawyer that night because of the profound unacceptability of this guy Evrim's actions and the complete denial of responsibility from Desha, the PLS representative. I have no recollection of this meeting; I was so far into seizureland that I just don't know. I seem to recall that the lawyer will no longer work with PLS but that may be faulty memory.

So I will not be spending any money on Portland Lindy Exchange, or indeed Portland Lindy Society, events again. They owe me one hell of an apology, as they have known for nearly a year. Assaulting someone with epilepsy with a strobing flash is not ok. Shoving someone on the dance floor is not ok. Verbally attacking people is not ok. Choosing to support the so called professional who does this rather than your paying customers-extremely not ok, unprofessional, and a great way to lose customers.

I will not pay money ever again to have my physical and emotional well-being put in danger. Portland Lindy Society willfully contributed to physical and emotional abuse of a loyal customer and that is not just unacceptable, it is illegal. I am disabled, I am not less, and I deserve better.

Background for the rageification: I've kind of had it with people being all "but ensuring accessibility is soooo haaaaaaaaaaard" when all they have to do is post a sign or turn their light to solid or whatever. Fuck you. I have to do this shit all day, every day, & so if you think me asking you to enforce a "no flash photography" rule for 3 hours is such a burden, go get a whaaaaamburger & cheese cries, because I do this every damn day & I don't get sympathy for it, I get abuse for daring to stand up for my rights.

The Happy Family Meme, Holidays, & Why I Hate December.

I'm pretty convinced the people who push all of these "-insert holiday here- is for families!" ideas have never read the news. Ever.

Newsflash for you people: Some people's families SUCK.

So you make all these days (mostly Christian-chosen holidays, which is a whole other issue) days that what you can do is be with those abusive assholes who you haven't seen since they told you to get a real job or die on the street when you were a teenager, or you can be alone hearing all about how Xmas is all wonderful and yay family who love you and are awesome no matter what.

And to that I say, fuck you.

There are all sorts of myths already about people who have shit-awful families. Didn't you know? It's my fault my parents are abusive. Obviously people from dysfunctional families are unable to love or care or whatever; never trust someone who has no contact with their family because no reason is good enough to justify that because family is family. Someone who has no contact with their family, even if their family is abusive and toxic, is all sorts of indescribable awful. That is the meme. We all are just spiteful and horrible because, don't'cha know, families always are there for each other and love each other. No exceptions.

And to that I say, go fuck yourself. If you want them so badly, you take them.

Then you throw holidays in there. Go spend time with your family, you say. All families love each other, holidays are for family, forgive/forget, I slap your face off and you're still going.

Because our culture refuses to admit that some people are related to shitstains, a holiday is a day where your only choices are:
a) go be abused
b) sit at home hearing how you should be with your family.

Because I don't feel bad enough already about being told I'm subhuman for avoiding those people, I also need to have no options for doing stuff today. It's like society at large is trying to bore & shame me into forgetting that I have parentally-induced dents in my skull.

And I know I am not the only person in this position. It isn't a moral failure to hate your family or hate holidays. You can't really have one without the other very easily, and if you really think it's a moral failure to not like having parentally induced dents in my skull & other PTSDy memories, go fuck yourself.

K

So this is why I don't blog for other people much, or go to many conferences.

Something I wrote here was reprinted on Thinking Person's Guide to Autism (with my permission, at their request). It was the story about C. You know, the C who had no reliable and honored means of communication and who was given no agency?

Apparently it was an anti-ABA screed, judging of his parents (and damn right I judge his parents. I'm not a hypocrite-everyone judges everyone. "Judging" does not mean "makes a negative assessment of someone and shares it". "Judging" is making any damn assessment, good, bad, or neutral, and keeping it to yourself or sharing or whatever, judgement already made.) We all do it, all the time, it's one of the things that makes us human, conceited because I was proud of what I had done (I don't understand what's wrong with that?), a bad example because I yelled at a woman who grabbed a child's body and made him do things he expressly indicated he did not want to do (because autistic kids don't deserve bodily agency? Forget that), and all kinds of other things I didn't say.

There are all kinds of controversial things I actually do say. If you must yell at me-and sometimes I think "terrorize the autistic" is an international sport-then yell at me for something I actually said. Don't yell at me for "tone"-we have had that discussion before and I think it should be an offense punishable by being cut off from the internet for 3 weeks. If I am talking about a specific event, unless it is about you it is not about you. You probably aren't that important. If I say something about a specific person, place, thing, or idea, I'm dead certain it's true. I have a painfully good situational memory and good pattern recognition-things that are honed to, you know, predict when people are going to slam your head into a wall.

I avoid contact with people who do these kinds of things because I've already had enough of it. I know where to find my mother (dents in the skull for all!). Speaking of skull dents, I know where to find the sack of shit who put me in the hospital with adrenal crisis, brain swelling so bad I couldn't stop throwing up and couldn't see. I know where to find the sorts of other people's parents who stab me in the arm-and yes it happened and go fuck yourself if you are going to tell me that I probably deserved it. No one deserves to be stabbed in the arm by a stranger or even someone they know, even if they are committing the huge crime of being autistic and adult at the same time. I know where to find the sharks. But I am tired of being forced to swim with them.

Streeeeessssssssssssssssssssssss

Hell is other people. Hell is awareness without understanding. Instead of trying to convince me I am a horrible unempathetic (a load of shit, btw) half-human for not being willing to forgive truly shitty things and for not supporting the WAAAAH MY KID IS BROKEN pity party, let's talk about being an autistic adult in the world that this attitude has created.

Please!

Let's start with a school which shall remain nameless. A teacher who shall remain nameless, who was all for me taking his indoor climbing class, knowing I have epilepsy. Then the A-word comes up and he's all "cannot understand risk" and "would be better suited to a yoga class". Yeah no. I don't like yoga. I like high places and getting to use my muscles. I evaluate risk for a living, except without time to think about it. I WAS A HIGH LEVEL GYMNAST AND THIS IS A COMMUNITY COLLEGE CLIMBING CLASS. It is well within my capabilities thank you very fucking much.

Or let's talk about disability services at the school, who argument-from-tone'd me after not listening to me at all, just this teacher. Or the deans who suggested I don't belong in college at all because I am autistic. Citing my GPA would just be ridiculous, given that it's very high, so let's go with ILLEGAL DISABILITY DISCRIMINATION WOOHOO. Or all involved telling people all about my neurology without verbal permission, much less the written consent they legally need to get.

Or let's talk about the never ending "yes, your strobe on your camera is a strobe light too. Yes, it can cause seizures. Yes, it's a dick move to 'forget' to turn it off. Yes, I have as much right to be in public as anyone else" battle. Or let's talk about the event photographer who shoved my friend and aggressively multiflashed in my face, because he takes pictures for money and therefore the rule did not apply to him.

Or let's talk about the bikers who say they're willing to take the risk of MY having a seizure from their strobes because epileptic people don't drive, right? So who really cares?

Or let's talk about the fucker at a pizza place some friends and I go to regularly who said that if the (nonessential to the venue) music choice was a seizure causing problem, we can all just leave. We have thrown paper airplanes and cupcakes and done awful ballet and lindy hopped and built forts in this damn restaurant but OMG NOT TEH BRAIN DIFFERENCES NOOOOOOOOOOOO. Everyone else who goes there might catch it and that'd be a travesty!

Or we can talk about how nothing is ever easy because people make it hard when it doesn't have to be, and when I express frustration it's because who I am is apparently incomplete and not a really real person, but if my parents (who by the way are poor excuses for human beings) were to express frustration about me, or tried to use my neurotype as a reason for being poor excuses for human beings, would get loveyhugs and sympathy. Because they are real people. And I am not.

(there's all the regular stress too--finals, projects before finals, work, med changes, etc. Usually it's tolerable. Now? Not so much. THANKS, AWARENESS!)

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.