Sunday, September 27, 2015

So much for "we learned from our errors" and "we promise to be better"


In 2008 I went to the Autcom conference, as supposedly they’re a good conference and good organization that doesn’t suck. Their board member Gail GIllingham Wylie followed me around with a flash camera, knowing that I have photosensitive epilepsy. THe parent & support person of a person I was supposed to be presenting with also really crossed the line; her son had a lot of lighting effects in his power point, I said no don’t, epilepsy, & she said to just choose to not have epilepsy, I have speech so obviously I can just, you know, not. Irony: that panel was supposed to be about not making assumptions about one ability or disability based on others.

THey were not sorry until very recently, because it wasn’t politically expedient to not be sorry anymore (I stand by that hypothesis in light of their current behavior). To prove they were dedicated to doing better, they were going to take these steps:
-actually say the S word (sorry is the s word)
-indicate they meant it
-by funding attendees from underrepresented groups
-and actually meeting my godsdamned access needs.

Um. They did one of these things. I was worried about the access needs thing bc not a single thing went out indicating flashing things aren’t ok to presenters or to attendees & I made it crystal clear that because of their history (GGW did not lose her board position for assaulting me with a deadly weapon, nor was she asked to stop by anyone she listened to. Neither did anyone from AutCom say they were sorry they condoned hurting me with their silence, although they did have members throw big whiny fits all over because I don’t drop that shit for obvious reasons).

I almost didn’t go. I almost let them eat the cost of the plane ticket, but they supposedly learned. Maybe they didn't send out the guidelines in advance because they're disorganized?


They did not learn.
We are not cool at all.

On Friday night another attendee, who I am not naming because that’s actually not necessary, took flash pictures all over the everywhere. The insert of the conference materials said no flash photography, there was time devoted to the no flash photography speech, etc etc. I said if he did it again I’d shove the camera up his nose, which is not a literal thing & my go-to for such things because it can’t be taken seriously as a threat yet is a ‘no really I mean it stop’ thing to say. He was upset & this is when his support person decided to acknowledge the rule (support people! If the folks you support need assistance in respecting rules, that is so very part of your job! To say they just can’t is presuming incompetence!). I made sure the president of AutCom knew, as she’s the one who made promises; the rest of the people I talked to dropped out of the conversation (which is why I almost decided not to go at the last minute).

And this is where the timeline gets fuzzy because I’m time agnosiac anyway & It’s a big mess of what the actual fuck. Everything happened; I might have the order wrong. Bear in mind this is an organization that made me promises to indicate they learned & are going to do better. They had 7 years to figure it out.

Just before heading down to breakfast, my conference roommate Alyssa & I got a text message from someone we were going to present with, asking if she could come talk to us. Yes, of course. Beth comes down & sayeth unto us that there’s a big argument outside her room between Emily Titon (President of Autcom), Sandi McClellan (a past president), & Linda Rammler (honestly I have no idea what her position is except volunteer). The power structure in AutCom is really weird, as the president should be able to make promises & agreements & be backed up. That isn’t a thing. Emily had told me anyone that flashed would be removed. I didn’t believe her because I’m aware of how people (read as: AutCom. They have their own prejudiced preferences) are and honestly that’s a nuclear option anyway. She was trying to fix the night before.

So that’s exciting.

When I headed downstairs with Alyssa to find breakfast, we encounter another access barrier: there is an attendee who touches everyone as they go past her. She is in the doorway. The other door does not open. It is impossible to avoid her & when asked not to touch people she ignores them (or at least she ignored my wishes; she broke into a run to touch us when we were trying to take evasive action, as saying "don't touch me" did not work). Do not violate my boundaries first thing in the morning, or indeed ever. I may use my teacher voice about how godsdamn are you people ever terrible at access. Because, um, you are. And I did. Touching me isn’t ok, flashing isn’t ok.
Apparently having boundaries isn’t allowed any more than having photosensitive epilepsy is (you want to know where I got the idea I’m not allowed access needs? It’s organizations that are supposedly ours. Are you proud?)

Like I said, now is when order gets fuzzy. So let’s just hit some highlights. People representing AutCom involved in this clusterfuck include Linda Rammler & Sandi McClennan as already indicated, as well as Anne & Eric Bakeman. I am unclear on their actual titles or the power they are supposed to have because they were wielding a lot, and things were not ok. If I specify an individual said something, by name, that means I am certain that person is who said or did it. Also for the unfamiliar, AutCom supposedly supports civil rights and has tshirts that say “presume competence” and has done much of their work with issues that effect people with more obvious or intense support needs and AAC users. Sandi was wearing one of those shirts and I believe Anne was as well.

I had many well projected (thank you choir!) words about how they can’t manage to keep a fucking promise about a fucking common access need. Yes, I swear. I did not swear at or about anyone but about behavior. People may not like profanity but it is not an attack unless used as an attack.

Attacks I endured from AutCom include:
-persistent shortening of my name without permission (this is a dominance move & is extremely disrespectful. It’s more disrespectful down a power gradient)
-Sandi telling me that I didn’t belong at AutCom, because I insist on promises being kept & on my access needs being respected.
-Being told that I was irrational for defending my access needs. This is gaslighting and it is unacceptable.
-Continual ignoring of ‘do not call me <Shortened name>. Apparently this boundary is also irrational.
-Being told that my need to not be faced with seizure triggers is less important than someone’s attachment to his camera.
-Being told that my access need not to be faced with seizure triggers is less important than board member’s unwilligness to talk to the flash camera person themselves; it's too much work to enforce the rules they agreed to
-Being told that my access needs would literally be the end of AutCom.

Not-attacks-but-still-not-ok included:
-Tone policing.
-Anne condescendingly suggested I try saying please.
-Very many iterations of “you need to politely fix it” when I had been promised I would not have to fix things, as if I have to fix them it means they didn’t actually address the issue.
-Being told to not use ‘uncomfortable language’ (meaning, ‘fuck’) while simultaneously shortening my name and telling my my access needs are not real.
-Every indication that there is no way I could be nice enough about their godsdamned access barrier that i shouldn’t have had to deal with and that they promised I wouldn’t have to deal with.
-In a real ironic twist, the folks wearing “presume competence” shirts told me the man with the camera didn’t understand, couldn’t understand, he is mostly nonspeaking (they said nonverbal. I find the distinction important for respect reasons) and has been institutionalized so he can’t possibly be held to the rule. Eric Bakeman was a real pusher of this, as was Sandi.
-Continual pushing of the idea that a grownass adult and his grownass support person cannot be expected to follow a simple rule.
-The undercurrent of “Your support needs don’t real”
-When I requested to go the fuck to home since I apparently don’t belong there, they told me I owed them presentations because they flew me out there. That was not the deal. The deal was I would give them a second chance. I don’t owe anyone shit.
-being asked the same question over and over and having my answer ignored. I don’t want a fake apology. I want people to not fuck up. I can only say that in so many ways.
-having words put in my mouth that I did not say. Don’t do that.
-consistently ignoring how apologies work (say you’re sorry, say what you’re sorry for, do a thing to try to fix, make a plan to not do again, go forth & actually do it) while doing the attacky things listed above.
-”all access needs matter” conflation of intensity. Everyone’s access matters. Potentially fatal things really do need to come first in common areas. Bodily autonomy, too, in the case of the woman insisting on touching everyone.

During this I called Emily Titon on the phone & said, effectively, "you. here. now." but as soon as she got there she was whisked away for a reason I do not know. So the president of AutCom, who made these agreements, brokered these arrangements, missed all the conflict about them. She was just whooshed off into the ether as soon as she got downstairs.

At some point Linda Rammler also threw a cup of coffee at (actually at) Beth, though that was not where I was. Upon being told that expecting my access needs to be met was irrational, I did also throw a cup. Mine was empty. It hit exactly where I was aiming, 10 feet above & 4 feet to the right of all people. She is not held responsible for this that I saw, although I was told to just not have epilepsy then, repeatedly, in many different ways.

Other things that I was told happened but did not personally witness included non-competence-presuming people threatening to ragequit if Emily held AutCom to their rules. They said that respecting my access needs would be the end of AutCom to my face and possibly elsewhere as well. Linda Rammler went so far as to say that enforcing the rules would prove Simon Baron-Cohen right. This is a nasty, hateful thing to say.

The gaslighting started basically immediately, also. But the thing is: there are witnesses. There were a dozen people at my side telling them they were wrong, they were fucking up, they were violating the first rule of holes (stop digging), that they were violating their own claimed values (“presume competence” and “civil rights for all”). They gave no fucks about my civil rights & said that enforcing them would destroy them. They said that the man who flashed the camera is incompetent. Those are things they did.

Apparently the man with the camera, incidentally, was sorry as soon as he understood the situation, he wanted to apologize. Yes, okay. I am actually pretty fucking reasonable. He is sorry, will not do again, kept camera in his room, we’re cool. As long as it doesn’t happen again, we’re fine.

There were many many witnesses to what went on. Loads of witnesses. Other attendees jumped in with their examples of rules being violated causing a hazardous environment for them (numerous people had issues with the touching, people were getting headaches from people ignoring the scent free policy). It’s like if you can express your needs orally, AutCom has a policy that they’re preferences. Autism does not work that way. They should know that but are not displaying an understanding of that.

After the panel I was on about parents and autistics collaborating to bring meaningful social change, Sandi did accost me (yes, it felt like that. There was no escape &  I didn’t want to speak with her) to nonpologize. I say nonpologize because the words “I’m sorry” never escaped her lips, nor did acknowledgement that telling someone that they don’t belong somewhere is fucked up, nor did acknowledgement that telling someone their access needs are irrational is more fucked up. “I handled it very badly” is the closest she came to that & I felt pressured to say words that I don’t mean & therefore didn’t say them. It wasn't an apology; it was a litany of excuses. We aren’t cool. We aren’t cool at all.

It’s never cool to fly someone across the country to show them how actually you haven’t learned at all. That isn’t how “we’re sorry” works. I know I’m not allowed access needs, & this is the latest example that I can give people.. Flying me across the US to show me how much you don’t care to do better is phenomenally unacceptable. Making liars of my friends is unacceptable. Presuming incompetence when it’s easier & feels like an absolution of responsibility is never cool.

We are not cool at all.

Other people who witnessed this, and oh were there ever loads, may be writing their accounts as well. I am not the person to tell that my access needs are hard. I don't want to hear it, I already know I'm not allowed them. I fight every day for your right to supports, at least pretend you care about mine.

Saturday, September 19, 2015

Movement teachers: I am your dream student. I am your nightmare student.

I highly doubt anyone who has or will endeavor to teach me movement things will ever read this, but on the off chance they do. It may also help someone else who is trying to teach sports or dance or other similar things to someone who does movement like I do. 
Movement teachers: on the surface I am your dream student.

I'll walk in. You'll show me basics. Or have someone show me basics. They will do them at the same time I do, so I can exactly follow. I'm echopraxic, you see. If I have someone to exactly follow? I can do that. I can make my body do exactly what they do--or as close to exactly as different builds allow.

You will probably think that I am talented. I probably am not. I am echopraxic and I have a big library of movement to draw from. So as long as I have someone to follow I can look comfortable with the things.

You may be tempted to skip steps. You may forget there's things I haven't learned. I know how to do a lot of things with my body because of years of dance, gymnastics, & team sports. This is why I can give you the impression I have an aptitude: because if it is on the ground or in the air I have probably done something similar. I've done gymnastics. I've spun a flag & marched at the same time. I've done some ridiculous number of styles of dance. I've played basketball on feet and on wheels. Whatever you're showing me, I'm sure to have a bit of muscle memory that relates enough that I can copy you or more advanced people.

Here's where I'm your nightmare:

I can only copy for a substantial amount of time. Yes, I can do exactly what someone else is doing while they do it. But until I've over learned the movement, I will be inconsistent. Things will be in the wrong place. Things will be in bafflingly wrong places the first 200 times I try to do the thing without mimicking. The next 200 times I have to talk myself through it. I may say one thing and do another. I will find new & exciting ways to do the wrong thing.

Did you skip steps? Or forget that I hadn't learned a thing? This nightmare trait you can blame other movement instructors for, as it isn't a natural part of my makeup : I will still try to copy. I will still try to figure it out without asking. I may not know how to do the thing, but if you're asking me to I am going to think I'm supposed to. I know I haven't been taught it, but asking has rarely gone well. Clearly someone who knows what they're talking about thinks I already know it. Asking gets all sorts of belittling when you're asking about something 'easy' and can do things that are 'hard'. I do not need that in my life. It's easier to watch, copy, approximate. It may be more physically dangerous but I am more confident in my ability to avoid injury with my body than I am with instructors' ability to not be a jerk if I can't do something they forgot to teach me.

It takes a very long time for me to get things consistently in my motor memory. I'll do it extremely well Monday. I'll do it extremely well Wednesday. Friday it'll be all wrong. My body forgets which way to go, or which foot I do things with, or what order things happen in. It doesn't just forget new things. It forgets old things. A couple years ago my body forgot how to do a backhandspring--something I've been doing well over half my life.

And I am your surreal dream:

I'll learn to approximate skills. They'll be okay if I talk myself through them. Or maybe I can't do the skills at all. And then for some reason I won't even attempt them for months. Suddenly I get the ball at that spot I can't shoot from, or that dance move will become relevant. Without hesitating, thinking, anything my body will do it. It may even do it flawlessly. And you'll be confused. You didn't think I was holding out on you but maybe I was.

I was not holding out on you. My motor planning really works that way. Sometimes I have to hack it by putting myself in a position where doing something automatically is the easy option. Thinking about it hasn't worked, but letting natural movement suddenly lets my body do what it knows.

I may lose skills or movement patterns that are easy, but not the more complicated ones. There may be rhyme and reason to this, but I haven't been able to find it & neither has anyone else. I can tell you why specific combinations of movements or individual skills are hard but not why I lose things.

We're back to why, if you are willing to work with me, I'm your dream student:

I'm motivated. If I stick around long enough to master something that confused me, you are likely stuck with me. I don't stop doing things because they're hard; I was the kid who couldn't write my name. Who literally tripped on my own feet. Who couldn't organize movement well enough to get a book out of a desk without spilling its entire contents. Who couldn't kick the ball in kickball or serve in volleyball. Who only made the basketball team because it's no cut. Who got dropped from basic level tumbling classes until I spent a couple years with a book in the park painstakingly teaching myself cartwheels & walkovers, because no one else thought I could learn it. Who could not eat my food without also wearing it.

None of that is exaggeration. I was born dyspraxic. I no longer function as dyspraxic. I rewired my brain on my own. You have not met motivation & stubbornness until you have met me. In my life as a movement teacher, I say "hard work beats talent because hard work shows up" and I will always show up. I may get frustrated, but I want to work through it. I've made "beating my coordination challenges into submission" a way of life, & I will continue showing up unless you make me unwelcome. In which case I will take my motivation, stubbornness, always trying to be better somewhere else.  But "hard work beats talent because hard work shows up" applies on all sides here, & take it from me, beating talent with hard work starts as a nightmare but it turns into a pretty sweet dream.