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.

More Consequences of Awareness

Kay.
So I'm taking a rock climbing class at the local community college. One of my good friends is taking it with me (for fun, and because, well, having a seizure at the top of a climb would be pretty horrendous if no one knew what was going on).

A few things to note right now:
a) I'm pretty much left handed for athletic purposes.
b) It takes me a few tries to reverse something to work for my left hand-ESPECIALLY if I look at it forward on or from anywhere but right next to the demonstrator.
c) I start displaying imminent frustration before I really notice it, especially when the lights are bad (they were).
d) On me, that looks like sideways hand flapping, gettingallthewordsoutatonce, being a bit more "don't touch me".

I get services from the disability office at school. I am not required to tell my instructors what I have, but it's not like it's a big secret, and I don't want autisticy stuff to be assumed to be seizure activity or vice versa, so everyone knows. No big deal. Or it shouldn't be.

But! My rock climbing teacher! He's *aware*! So we're doing our thing in class, learning to belay after we learn to make the knot. All the staff and instructor types are right handed. Apparently I'm the only left handed person they've ever met. So they tell me 15 different ways to do things, most of which amount to "be right handed".

I'm a bit frustrated with this, but fine. Whatever. I can climb like woah. I manage to not drop my friend for whom I am belaying-I was clipped into a ground anchor because of a significant size differential, but he did not, in fact, die. I also did not die while climbing. Well done, us.

Then this minty staff lady comes over and tells me to do the opposite of what the instructor told me. Oh...kay...

None of these people have The One True Truth of belaying, obviously. All the things I did did, in fact, work. But being told 3 different things in 5 minutes (again, most of which amount to "be right handed") is a bit much. I'm still clipped in to the ground anchor, ready to go, my hands flap a little.

"Unclip."

"uh, what"

"Unclip. There seems to be negative energy and emotions.:

"...what"

Blah blah unsafe blah blah not concentrating blah blah frustrated.

"Well, you told me one thing and she told me another and it's what I was doing so I'm processing".

"Unclip & we can have a discussion"

"...I want a cognitive interpreter..."

Seriously, I had no idea what I did. None. The first thing that came up in the 'discussion' is that as an autistic person I just operate a bit differently, and oh man did the condescension turn on.

No, I do not need little words. No, I am not going to hurt you (WHAT is it with instructors asking me that this week? I'm 120 pounds. I am about as intimidating as a rabbit). My friend, who actually knows me, trusts me to not drop him. Please, keep your distance. Please, stop acting like having me here is a big fucking hassle. "are you sure you can...do this?" Why yes, yes I am. Crazy, but I'm in pretty good shape.

I do, in fact, learn even! I'm good with the distance keeping, honestly. I'm not so good with you talking to my friend (who was cognitive interpreting) like I'm a recalcitrant child, like I cannot hear you. I am not ok with the ableist language to my classmates and the assumption I wouldn't get it. Yeah, 'people like me' do in fact have recreational activities.

Oh, people like me are even adults! I don't care how well meaning your statements are, when they're talking points out of PSAs about children, I hate you. No, I won't fucking take a 'time out'. I will go get food. I will go for a walk. Anyone who thinks 'time out' is acceptable language to use with a grown woman is too far out of realityland for me to listen to, ever, but yes, I do in fact remove myself from situations.

Oh. The catalyst for his freak out? Flapping is BAD. No. Seriously. I thought he was saying it to cover for something even more ridiculous, friend said he was dead serious. Awareness tells him so!

Thanks, 'awareness'! I need to have my coping mechanisms demonized! It makes my whole damn day! I need to be treated like a kindergartener by a community college PE teacher! That made my whole week! And, shit! Having half my teachers afraid of me, THAT makes my whole year! Because we all know that all autistic people are Manchurian Candidates or something, just WAITING to completely lose their shit and destroy everything in our paths!

Except we aren't. If this is 'awareness', ignorance really is bliss.

What epilepsy is.

Epilepsy isn't just seizures.

Epilepsy is always having to be vigilant.
Epilepsy is knowing every escape route in case of a seizure.
Epilepsy is having to carry a first aid card, an ICE sheet, and wear a medicalert.
Epilepsy is doing all that, knowing all too well that no one actually looks.
Epilepsy is hoping people don't run away the first time you have a seizure.
Epilepsy is always being told that 'there are meds for that'.
Epilepsy is always having to be aware of potential flashing lights.
Epilepsy is having to choose between leaving a place & risking the lights.
Epilepsy is teaching other people how to turn off their red eye reduction flashes.
Epilepsy is having to explain why that matters.
Epilepsy is people telling you that your safety is less important than their picture.
Epilepsy is being yelled at for advocating for yourself.
Epilepsy is being yelled at for not advocating firmly enough.
Epilepsy is being yelled at for not being able to be diplomatic about how someone is hurting you NOW.
Epilepsy is being told you don't have a real disability.
Epilepsy is often being disabled by the very people who tell you that.
Epilepsy is spending days making arrangements so an event is accessable.
Epilepsy is having those agreements be broken, ruining your weekend.
Epilepsy is being expected to thank people for almost making an agreement.
Epilepsy is being yelled at for saying “you could have done better”.
Epilepsy is being expected to be nice about them trying, even if you just had a seizure that they caused.
Epilepsy is people telling you to stay in your house if others cause dangers.
Epilepsy is people thinking you are being too cautious by avoiding people known to be ableist.
Epilepsy is not knowing how many flashes will be a problem, but that whether 2 or 20, it's coming.
Epilepsy is having to educate people unwilling to learn, and doing so while you are at your worst.
Epilepsy is not being believed about your needs until you are in a drastic situation no one was willing to be ready for.
Epilepsy is being expected to be grateful when people almost treat you as a real person.
Epilepsy is knowing they don't think you are a real person.
Epilepsy is always hearing “you are an extreme minority so you don't matter”.
Epilepsy is hearing that from another minority who should get it.
Epilepsy is being unable to win, ever, because the rules keep changing, and giving up is losing too.

Why I dance. Why this is a battle worth fighting.

I swing dance (East coast/lindy hop) at least twice a week. I do this in spite of access issues that have been getting progressively more frustrating (and more hostile to deal with). It's possibly going to turn into a big legal & publicity shitstorm because being nice hasn't worked, being direct hasn't worked, and being mean hasn't worked.

So why do I bother?

Dance is good for me, that's why.

I have made friends. Not only that, but I've gotten better at making friends. I've gotten better at talking to people I don't really know. Approaching them is easier with the practice I've gotten over the past year.

Dancing is a peer recognized skill. If you can dance, that's something in common with a whole bunch of other people. If you're good, then there's something about you that people think is pretty cool, even if you never look them in the eye. I'm a quick learner-I'd not say I'm good, but I'm competent. I'd be lying if I said it doesn't feel good when people are surprised that I've been dancing for less time than they thought.

Dance is exercise. It uses up a lot of the energy I used to burn with gymnastics. It's not like going & lifting weights-it's the kind of workout that sneaks up on a person. Dance is so fun that I don't realize I'm pushing some of my physical capabilities until my calves start hurting the next day.

Dancing is a conversation without words. I'm not so great at reading people's body language. I'm not so good at reading between the lines when they talk. Following is sort of practice at reading people's intentions, but without the social traps waiting. If I can't read your body language, I could say or do something that's the opposite of acceptable. If I mis-follow a lead, whatever, it happens. It's practice, though, for at least seeing other people's cues. I still don't recognize facial expressions, or what people's changes in posture and such mean, but I've been noticing them a lot more.

Dance is freeing. It doesn't matter what I cannot do, it does not matter that I am fundamentally different in wiring, it doesn't matter that I perceive the world so differently from every one else. It's made up of movement and music. The language of dance is one that I can speak relatively instinctively, unlike so many other languages that people use. It's so liberating to be on a level playing field in at least one area of my life.

Not like I should have to defend what I do for fun, not like I should have to enumerate the benefits-"I like it" should be enough-but there it is. That's why this battle is worth fighting. Maybe I can dance with the next person who fights this battle, too, and we can be unstoppable.