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.


Why? Because my mother dying doesn't mean there's not advocacy work to be done, that's why. Let's play "spot the bullshit!"

From "anonymous lindy hopper":
FWIW I am not involved in organizing the event, but I do know many event organizers both in and out of the lindy hop world and I doubt that any of them could afford to implement everything that the ADA could possibly require (and for the most part there's no need to). I truly believe that an organization should make their event as accessible and enjoyable to everyone and I'm glad the ADA tries to enforce this, I am just trying to suggest proactive ways to ensure the writer of the blog can ensure and maintain good relations with the organizers."

First, I am pretty sure I know who you are.
Second, it is the event organizers' job to "ensure and maintain good relations" with the customers. You don't get to say "You have needs that are inconvenient, though completely free to accommodate, but I DON'T WANT TO SO GIVE ME MONEY TO HURT YOU." It does. Not. Work. That. Way.

Third, a picture is worth a billion trillion words. Here is the sign that an organization with a lot of crossover with the people who put on PLX thinks is acceptable acquiescence:

Please note the potholder. It's there for perspective. Cuz not only is it worded as circuituitously as possible, it's also the size of a damn potholder.

The sign I printed out, which this other organization (that I suspect "anonymous lindy hopper" is deeply involved in) keeps losing, looks like this:

It says "NO FLASH PHOTOGRAPHY" above and "Thank you for your cooperation" below. It takes up a whole 8.5x11 sheet of paper, which is the minimum to get anyone to look at anything. And it did not take any special skillz or money to make-I did it in about 3 minutes, so neither time nor money are an investment here.

I left a whole lot more bullshit unpointed out, so everyone can play!

ETA: Obviously nothing I am asking for costs anything. Well, maybe kicking Assaulty Camera Guy (Evrim Icoz, for those playing along at home) out does, but so does paying him, & paying people to assault your customers is a really good way to get them to not come back and write a blog post that says that Portland Lindy Society paid Evrim Icoz to assault me with a strobe light at Portland Lindy Exchange. Other than that, no idea what the purpose of that straw argument is. Ideas, neurodivergents?

Monday, January 23, 2012

Conflicted Emotions.

This is what I wrote down trying to process my feelings & thoughts after learning of my mother's death. It's all very jumbly & confusing

So this weekend my mother died, & I'm not sure how I feel or how I'm supposed to feel or really anything. Those of you who know me know that I've not had a relationship with my mom for years, but that doesn't prevent the emotional confusion.

The last thing my mother said to me was "get a real job or die on the street." I was extremely, obviously ill at the time, & that was what she had to say. She had spent the previous several years hurting my physically-I have dents in my skull that I was not born with-and verbally abusing me and justifying her husband's abuse of me. So, if that is my mother, if that is who she is, then how I feel right now is probably appropriate and normal. Mourning one's abuser and tormentor isn't something that is reasonable to expect of anyone. Numbness, if not outright relief, is a reasonable thing to expect.

But my mother wasn't always like that. When I was young, she fought for my intelligence and capabilities to be recognized. When I was being tormented at school by teachers and students alike, she logged many many hours talking to teachers and parents of other kids in my classes. I've been having roughly identical "WHY IS EVERYTHING SO DAMN DIFFICULT?!?!?" meltdowns since I was about seven years old. When I was little she'd squish me tight, stroke my hair, & say "I don't know, punkin. I just don't know." She didn't understand me by any stretch of the imagination, but the mom I had when I was little sure tried. She made mistakes, as do all parents, some of them pretty huge, as with all parents, but the mom I had when I was little was doing everything in her power to do what was best for me.

And that's what makes this so complex & difficult. The mother of Little K was a woman worth mourning. The mother of Adult K was scary & upredictable & abusive, and not ever dealing with her again is a relief. But I had it in my head that Little K's mom could be somehow revived.

That's probably not the case though. Little K's mom died a long time ago, I think, even though her body never went anywhere. I think I knew that and did my mourning and mental burying a long time ago. The scary person occupying her body is not the mother I could once depend on to always be on my side, even when she didn't understand why that was my side.

So being numb is probably ok. I think I came to terms with my mother's death years ago and just hadn't thought of it that way. Feeling guilty about being numb, probably also ok, but not necessary. Or something. I don't know.

Saturday, January 21, 2012

Guest Post-To The Parents Of Newly Diagnosed Kids

A friend of mine, pseudonym of Gen Eric, wrote this. It's great & wholly unedited, except for some HTML fixin'. Enjoy.

Your child is probably between the ages of two and five, possibly older (even much older) and possibly (though unlikely) younger. Your child was probably developing just like any typical child until slowly, and almost without explanation, things seemed to take an unusual turn. Maybe they lost speech, or eye contact, or just started doing “unusual” things like stacking or lining objects. Frantically you run for a medical professional, who looks your child over, does some tests, takes you into a room, and tells you a word you’ve been conditioned since childhood to fear.


Your heart sinks. Your dreams of college graduation and grandchildren seemingly fly out the window. This professional probably fills your head with images of someone who will never relate to the world, never get a job, never live independently. Running to the Internet, all you seem to find is tales of financial ruin and broken families. You sink into a deep depression and desperation. How can this child, who was so normal only a month ago, suddenly “vanish” into this “void?” Obviously they just got sick, or trapped, and it’s your job to rescue them.

Now that all that unpleasant business is out of the way, I only have two things to say to you: welcome, and don’t be afraid.

Welcome to a fascinating new adventure with your child. Welcome to learning more about yourself than you ever thought possible. Welcome to a true autistic community that is ready to accept you with open arms.

Don’t be afraid, because autism is nothing to be afraid of. The media has been filling your mind with “autiephobia” since before you can remember. The autism industry is no better, and is actually much worse. They need to keep you afraid so you’ll buy every pill, potion, and behavioral “treatment” they offer, in classic medicine-show style. They need to keep you afraid so you’ll keep donating, keep walking to bring in donations; if you don’t, where will they get their exorbitant salaries? If you give in to the fear, it will consume you and your child. If you stand up to the fear, it will eventually back down.

I call this an adventure, but remember, it’s not an adventure that ends with a normal or “recovered” child. Your child could regain speech, get mainstreamed, succeed in college and work, marry, and have children, or none of those things, or any combination thereof; but no matter what they’ll still be autistic, every bit as autistic as they were the day they were diagnosed. There is no such thing as a “cure,” and there is no normal child who got sick or trapped in some autistic shell. The only thing the “cure” industry does is to give you a stone to make your soup, then sit back and declare victory when your child naturally develops.

It’s true that with behavioral “therapy” (animal training), your child may learn to look, and act, normal, but they won’t be. All they’ll be is an autistic person who is afraid, or ashamed, to be an autistic person, and loaded with a host of mental baggage. They may even harbor a deep resentment towards you, which is the last thing any parent could want. Your child is unique, and will always experience the world as an autistic person, and that’s not a bad thing.

The autism industry tries to paint neurodiversity and autistic self-advocacy as some kind of anti-parent cabal of “high functioning” “aspies,” who instinctively hate you for trying to cure your horribly ill child. The truth is that neurodiversity activists are as unique as autistic people themselves. Most of us are autistic, but not all. Some of us have an autistic child or other family member, some are romantically involved with an autistic person, and some of us got into neurodiversity through an autistic friend. Some of us are labeled “high functioning,” some of us are labeled “low functioning,” and some of us have been cycled through labels like some people cycle through hairstyles. We also have something meaningful and wonderful to offer you.

What neurodiversity offers you as a parent is the hope for a world where your child will be accepted on their own terms. Neurodiversity offers a chance to fight for what your child really needs, access and respect, as an autistic person. The neurodiversity movement values your child for their individual strengths and offers understanding for individual weaknesses. Believe it or not, we’re the ones really fighting for your child. We welcome NT allies and we hope you’ll join us in our fight.

We’re vehemently anti-cure (no autism, no me), but we’re not anti-progress. We know that every autistic person will develop differently, but we all develop. None of us are the same person at thirty that we were at five. Your child won’t be the same person at thirty as they are at five. And why would we, or they, be? Are you?

So welcome, I hope, to the neurodiversity community. I hope reading this has helped you calm your fears and prepare for your upcoming adventure.

Wednesday, January 18, 2012


Now it's my turn to tell you about this really awesome project spearheaded by Julia and ASAN.

So, I want you to watch this video:

You totally want to donate to this awesome project now, right? I know you do! So Here is the Loud Hands Project IndiGoGo page!.

Now I'm gunna tell you a little story.

Way back in the days of AOL being a viable ISP, I was a teenager on the autism spectrum. As I was learning more about the world, and more about the words that had been used to describe me & justify poor treatment, I found the internet. You can find a community about anything on the internet-even AOL.

I had been told my whole life that I was broken, just like the autistics in the Loud Hands Project video. I mean, seriously, I cried like a baby the first time I watched this, is so true. They never stopped trying to fix me either.

But I came to the conclusion on my own, when I was about 15, that I am not broken. Am I different? Yep. Disabled? You bet. But that doesn't make me broken.

At age 16 I started posting on autism message boards. In all my teenage arrogance, I was sure that these other people-almost entirely parents-would be all happy to know me & delighted to know that I'm not broken.

No. No they were not. Not at all. Not even a little. It was harsh, being all alone with the conviction that my brain is beautiful, that who I am is who I am supposed to be, that I am not damaged goods. When you hear from all over that you aren't ok because of how you are wired, it's hard to keep connected to that fundamental truth: you are ok.

As a teenager I was fighting alone, and it's always been the kind of fight I can't win-the fight to be seen as a whole, complete human being exactly as I am.

But I'm not alone anymore. We are not alone anymore. We may not yet be winning, but I am no longer losing alone.

And we need the Loud Hands Project so that the next teenage autistic kid who comes to the conclusion that she isn't broken, that everyone else's perceptions of her are what is wrong, has a community. So that she knows that there are people out here who embrace her beautiful brain and her loud hands.

See? Told you you wanted to donate.

The IndieGoGo site is taking donations until the very end of March 15. We've already met the initial goal, which means the anthology-the book that hypothetical autistic kid up there can find & know she isn't alone-is a go. There are other plans for more funds, as spelled out on the Onward & Upward page on the Loud Hands Project tumblr.

If you wish to contribute writing, here are some sumbission guidelines!

Find LHP on Facebook and Twitter!

More nifty goodies, including a script for sharing LHP, blog badges, and updates can be found on the Loud Hands Project tumblr.

We need this. It is time for our hands to be loud.

Thursday, January 12, 2012

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.

Saturday, January 7, 2012

More Toxic Lessons Learned

A common theme of my youth was that I was worth less if I didn't have friends and a social life. Another prominent idea was that no matter what, if people didn't like me, it was my fault and my responsibility to change that. Having an opinion on what I'd like or not like to do or expressing discomfort with someone or something was being "bossy" or "too demanding" or "high maintenance", and none of these things are ok to be.

So I was this kid who was told that social approval defined my worth, and who was told that if I in any way challenged what my social peers decided to do I was screwing that up. Basically the message I got, both directly and indirectly, was that people were doing me a favor by tolerating my presence at all, so I should shut the hell up and be grateful and go along with whatever.

Ask me if I think my worth is determined by social approval and I'll say hell no, because it isn't and never was. If people don't like me is it my fault? Well, maybe, but that's their loss now isn't it?

But some of that toxic stuff internalized. I know in my head that people aren't doing me a favor hanging out with me, but that doesn't mean I really know it. I rarely feel comfortable asking for a plan change, and while I call out ableism frequently, I don't feel allowed to be as intense about it as I should if it's consistent and consistently minimized. If someone's behavior is unacceptable to me, I'm more likely to remove myself then request or demand a change, even if I know and like everyone else there. They may be my friends, but I "know" that I'm not allowed to be uncomfortable and ask to have that discomfort remedied, because I "know" they only put up with me as charity or something.

That is some messed up toxic shit, and I learned it from people who supposedly wanted the best for me. I'm an adult and I've been demanding to be seen as a whole, worthwhile, unbroken human being for nearly half my life, yet I still can't totally shake this crap. I know it's bullshit. I know I have the same right to express my needs in a social setting as everyone else.

But that knowing doesn't suck the poison out, now does it?