Thursday, November 26, 2015

Borrowing Praxis

This becomes relevant every now and again, when people decide to have a problem with people who need more significant or obvious communication supports. The stars have aligned & I can write about it at a time that it's relevant to the broader community.

One of the things Autistic people know that doesn't make it into the literature is that we have difficulty with movement. Not necessarily clumsiness (though that is common), but inertia. Stopping is hard. Starting is hard. Executive dysfunction to a rather extreme and annoying extent. So, we have people who need support for typing, some members of our community are very prompt dependent, et cetera.

But a lot of us need to borrow praxis or initiation. It's a Thing. On a fairly regular basis my roommate & I will be standing at the top of the stairs and one of us needs tea or coffee, the other needs food. So whoever is having more trouble getting started will ask if they can come down at the same time. Or we both are stuck & need to go at the same time to borrow, so to speak, the other person's intention to go down the stairs. Thus we both go to the kitchen.

Am I making her tea? Is she making my macaroni and cheese? An awful lot of the arguments against supported typing go with "well, the supporter is the author of the communication". Someone standing behind someone else, touching their shoulder, is hardly showing evidence of writing with the other person's hand, any more than my roommate is making my mac & cheese because her movement helped me initiate my movement to get to the kitchen. Or maybe I'm making her tea.

No wait, that's ridiculous.

I don't even think this is autistic-specific phenomenon, though we are more likely to have to borrow others' movement. There's all sorts of psychology literature on how people perform better and easier among liked peers. They may not actively need a trusted person around to communicate clearly, they may not require someone else's momentum to get down the stairs (I keep saying that because it's my actual existence), but all people benefit from others. Study groups are basically this exact same thing, on a cognitive level (until they turn into socializing with a pile of books present).

Being skeptical of supported typing requires being skeptical of a whole lot of movement and getting shit done that I do, that many of my friends do, that non Autistic people do, is the point here. Taking a kick start from other beings is a thing we all do. It isn't valid when able people do it, sort of valid when people with fewer support needs do it, and non valid when people with more intense support needs do it. It's the same thing regardless, & it's valid or it's not valid.

And if it's not valid, I've been making an awful lot of tea with someone else's hands.

Thursday, October 15, 2015

Activism & the Overton Window. You're welcome.

I'm going to tell you something frustrating about being me:

I will say something, and people will act like it's completely outlandish. Something like, oh, disabled people deserve civil rights. Making everywhere an epilepsy nightmare is violence. Things need to be more cognitively accessible. Autistic rights are human rights, even if we never pass. That compliance training is by it's very nature abusive.

And then you'd think that I said that babies are delicious and we should burn down everything and start over! The way people react to these things I posit that are direct extensions of "we're people, dammit"...they're the reactions of people who are threatened. It isn't laughing or blowing off, no, it's more like actual threats of violence. It's a good time. Like I said something that is dangerous and absurd.

Then, about 6 months later, maybe a year later, someone else will say it. Someone whiter, or someone male, or someone with relative class privilege, someone considered more "respectable". And suddenly this thing I've been saying for ages sounds reasonable. Maybe we should consider that! Sure, I've moved on to something even more ridiculous, like that bodily autonomy means everyone or something, but the thing that got me death threats and called a crazy bitch or whatever is now being seriously considered.

That's because a function of activists is to shift the Overton Window. It's a thankless and scary function, but it is a thing we do.

What is the Overton Window? It's the fancy pants rhetorical term for the ideas that humans will consider. Anything outside this idea is seen as extreme, reactionary, outlandish. You can see the Overton Window in practice if you have followed 20th-21st century USA politics. The Tea Party in particular dragged the Overton Window way to the right, while supposed progressives have been trying to be 'moderate'. The thing is...being 'moderate' and presented as an extreme means the window shifts. You never have actual extremes, and you see the ideas and policies that are tolerated shifting according to what people see as the reasonable range.

So. I fulfill the function of saying "Actually, that isn't even a little bit extreme, let me show you some extreme you can't even handle this shit", and we lose somewhat less ground to people who are hell bent on curtailing our rights, because I am not a sellout like the US Democrats, for example. And there are always a few people willing to say "that's not unthinkable, really". And so the range of discourse shifts & maybe some day the idea that autism isn't all about our parents will be considered a reasonable position.

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.

Sunday, August 16, 2015

Stop Proving me RIGHT. (more on "A Year in the Life of Autism" & their devotion to being screwups)

I was actually gentler than I wanted to be yesterday. So. Now punches don't get pulled.

"A Year in the Life of Autism", which is the completely inaccessible and boring as hell v-log of some whiny autism parents who think it's ok to say they "live with autism" but that their son "has autism" but is not Autistic (they decided this) decided to hit rock bottom and start digging. Able people: you may not call yourselves this. Okay? You do not "live with autism", you cannot write about anything in the life "of autism". You are not autistic. You do not have special insight into being Autistic because you've got an autistic kid. Stop. 

They promoted a campaign called "silent selfie", where whiny autism parents posted selfies of themselves with hands over their mouths. Never mind that this symbol, as I said yesterday, was used to raise awareness of things like sexual violence and human trafficking. They want it too! This is to 'support autism'. You can tell because of how they treat autistic people.

Namely, by silencing. Irony much?

Not once but twice.

Okay, Dean & Amy, here's the deal: you posted about wanting to make a name for yourselves in the autism communities. You did. Congrats. You have made a name for yourselves as just another bigoted entitled mommy & daddy blog. You're special in that you manage to be both a sensory nightmare and dreadfully boring v-loggers. That's your claim to being different. Other than that, you're entirely like every other Woe Unto Me!! parent blog out there. 

Here's the rest of that deal: if you want a name for yourselves, you're going to get criticized. If you seek fame, people who disagree with you will also know who you are. They will tell you that you're wrong. If you can't cope with people saying you're being ableist & wrong, don't do it so damn publicly. Anything you put in the public sphere is...public. And if you're going to talk about autism, expect autistic people to notice. If you're going to be wrong about autistic people, expect us to tell you.

Moving on: stop fucking lying. You say you want to help Autistic people. But your actions indicate you could not give a whiff of a shit about Autistic people. When Autistic people say "This harms us" and you say "we're sorry you feel that way", you are saying "I do not give a single fuck what you think, because me me me me me!!!!!!". We tried being nice, much nicer than you deserved. Everyone who posted about why awareness is harmful? Banned. Twice. And I know you didn't read a single thing. Everyone who tried to talk to your followers (who are a malignant band of shitheads)? Banned. After hours of abuse.

There's more indication that you don't care about autistic people: your followers are malignantly ableist and abusive. You banned people for criticizing awareness. You did not ban, or even verbally say "hey not cool" to your Real People friends calling us "mindless idiots". To those who wrote inaccessible screeds telling us how we're the actual worst people in the world. To those telling us to shut up because the Real People are talking. If you cared about autistic people, you'd not sit there while we were abused. That's what you're telling people it's ok to do to your son. Great job. A+ parenting.

Yet more proof? "It's on our Vlog." Look, Dean, Amy, even if you weren't frankly really boring videographers? Vlog is not accessible to many many autistic people. We have language processing problems. That is, in fact, an extremely common feature of autism. If you were knowledgeable enough to be the saviors of autism you claim to want to be, if you gave even the tiniest inkling of a care about actually autistic people, you'd know this and act on it. If you don't know this, that's because you were too busy deleting things to engage with them. Several of us told you this. You should have known it already. Vlog is inaccessible. Moving the discussion over to a platform we can't use? Yep you're really sorry & you really care. That's totally the message that gives. Wait, no it isn't. It gives the impression that you're doing everything possible to avoid Autistic people in the name of getting all cuddled by allistic autism parents who won't criticize you. This is disgusting behavior.

Let's go back to your pathetic nonpology. "I'm sorry if you were offended, let's move on" is levels of no. First, "if"? Nope. You know that we were not happy because we told you in explicit terms. There is no if. Second, "offended" is downplaying things & you know it. Offended makes it sound like a matter of opinion. The word you're looking for is harmed. Your campaign perpetuates harm. I know you could not give less of a shit about adult autistics. You claim to care about your son. You're promoting a world that sees him as less than. Great job! Here, let me appeal to your selfish parent-ness: You all claim to want your child to make it without you. You are promoting the idea that your son will never speak except through you. This is forced dependence. You're the one insisting on making yourself indispensable forever, by promoting your stereotypes. Is your desire for it to be all about you really that deep, so deep you'll sabotage your son's adulthood?

That's a ridiculous question isn't it? Except it isn't, because you're posting your child's very personal business all over the internet. I wish I could believe you're ignorant of the ramifications but I know you aren't because multiple people told you.

Harm. You mean harm. And you aren't sorry or you'd stop doing it instead of letting your followers be just as ableist and bigoted as you are & then vanishing the page.

And "let's move on"? You don't get to make that call. You're the one who fucked up. The people you harmed are the ones who get to decide when or if to move on. There is no moving on with people who are insisting on continuing to harm people (see, "you are showing no indication of actually being sorry", above, & yesterday). We can't move on. We're still on "can you pretend you think we're people?" (answer clearly being "nope, I don't want to!! I'm too busy nailing myself to the cross!") You're trying to say "let us continue hurting you but shut up about it this time".

And this was all predictable. You aren't the first people to do this. You are not clever. You are not unique snowflakes. People the first night you came to our attention said this was exactly what you'd do. They've seen the pattern before.

In my very first comment on the restored page, I said the same thing: that you'd prove me right, that you weren't sorry, remorseful, or willing to learn. Anyone who deletes as many trying to educate you links as you did & shuts down the page because of mild criticism is going to do the same thing you did: deflect, make it all our fault for thinking we're people, & double down on being self centered bigots. I wanted to be wrong.

I wasn't wrong.

Maybe I'd trust autism parents more to pretend to think about our interests if more of you managed to convince me you're listening. But you, Dean & Amy, didn't even pretend to listen. You pretended to care, but not convincingly. 

We're the ones who will put your son back together. You had the opportunity to learn now, while he was little & you hadn't irrevocably fucked up. You choose, however, to continue being fuckups because it makes you feel good rather than actually listening to your son's peers. That is the choice you are knowingly, intentionally making. The choice to perpetuate a hostile world for your son.

Prove me wrong. Do better. Be better. Go and offer sincere apologies, all 5 components, to every autistic person you silenced (Twice!!) and then act on them. Be better.

Or you can continue down the path to proving me right. Your choice.

Friday, August 14, 2015

Who is your "awareness" really for?

If I never have to write about "awareness" again it'll be too soon. We've had Social Media Shutdown. We've had AutismSpeaks10. We've had AutismHeroes. We've had Smother Autism. And now we have Silent Selfie.

What do these have in common? They are allistic parent led initiatives that play on popular stereotypes to get pity in the name of "awareness". And they all, without fail, have responded negatively to Autistic people saying "that's not ok". It's like they all took the same class. Today I'm focusing on Silent Selfie because they're relatively new and because they're so emblematic of the problem, it's truly astonishing.

"Silent Selfie" is something a whiny autism mom (who calls her blog "A Year In the Life Of Autism", yet she is all about the person first language. There are so many things wrong with this it's a whole other post, let's just say: an allistic person can't write about that. Nope. That's co opting her child's point of view & pretending she speaks for him) started. For "Awareness", because apparently she's under that rock where no one has heard of autism. I don't know where this rock is, perhaps Narnia. It's where other allistic people take pictures of themselves with their hand over their mouth "for autism".

First thing wrong with this : hand over the mouth photos have been used extensively in raising awareness and support for survivors of human trafficking. I believe I've also seen them in sexual violence reduction campaigns. Do not do this. This is not your symbol. Stop. Stop. Stop. No.

Second thing wrong with this: we aren't silent. Self advocacy is for everyone. Literally everyone communicates. Their voices may not be out loud, but everyone has the capacity to express things. It may be with voice. Or sign. Or behavior. Or AAC. But everyone does this. So stop that.

Third thing wrong with this: parents & professionals & other allistic people go out of their way to silence us on a daily basis. We aren't silent because of autism; we are silent because of the sorts of people who build awareness campaigns. We're regularly trying to explain ourselves & being banned, bullied, threatened, deleted--silenced.

In fact, that's what the martyrs behind Silent Selfie chose to do: they chose to silence Autistic people protesting against their premise. And then they lied about it. A commenter on the threads predicted it, because she has pattern recognition. This is why I say that able people go to school for this: because the Autistic person said exactly what would happen, they presumably saw it, and they did it anyway.

When you are the dominant group silencing us, you don't get to use "this thing that I silence people for is the reason I am taking this offensive picture!" as a thing. That's not acceptable. I need a new irony meter. And no one is fooled; we know you're shushing us up because we're autistic & dare to disagree with you.

And we're back to who is this really for? It isn't helping your kid when you post about "silenced by autism"; it's really not helping your kid when you silence Autistic people. But it gets you warm fuzzes, right? And Oh What A Good Mom! points with other Real People. Nevermind that when you insist on speaking over us, you are perpetuating a world where your child is seen as needing you to speak for him forever (something you claim to not want! You want him to be able to do the thing! But not enough to build a world where people listen to him!). And that's ego. That's centering yourself.

Autism is not about you. We don't want your awareness. We don't want your damn silent selfies. If you really want to do something for autistic people, first stop posting your kid's business all over the internet. Then listen to us. Stop doing this mommy centered 'awareness' crap that stigmatizes us.

And stop lying about it. "We would never silence our friends with autism!" immediately after banning a dozen autistic activists? That's lying. Deleting all criticism and claiming people didn't understand it? Also lying.

We understand it. We may understand it better than you do. It's not okay. Your campaign is not okay. If you want a "pity me, for my child is not the child I wanted" awareness campaign, be honest and do that. Don't claim it's for us. It's not.

If you really want to do something for us, try actually being silent & listening for once.

Saturday, August 8, 2015

Things I cannot do--because I'm epileptic

Language note: If you're here from the epilepsy part of the internet, welcome. If you are just here to tell me that "you HAVE epilepsy, epilepsy doesn't have you!" or any other person first thing--don't. I choose identity first language for a reason. In this case, because yes, epilepsy *does* have me a lot of the time. I have to do a lot of life rearranging because access is miserable. Person firsting me isn't going to change that. I'd argue that person firsting is contributing to the problem, because it creates this picture that I can just leave epilepsy at home. I can't. That's the point of this post.

A partial list of things I cannot do because I am epileptic:

-I cannot go to conferences about autism, even those put on by Autistic people. "Allies" are right out. There's one--ONE--I have been to where someone hasn't been setting off seizures knowingly. One. And I was the bad guy for daring to be epileptic (please note that 30% of autistic people will have epilepsy at some point in their life).

-I do not do anything in the populated part of the city on weekend nights. There are too many cyclists with flashing lights on the front of their bikes. These are a danger to me. So are cyclists themselves, as they're so caught up in their self righteousness they'd rather threaten to kill or rape or kill and rape me than change their fucking light. "I don't care" is the least aggressive response cyclists give to being made aware that their lights endanger people.

-I can't always walk to the grocery store. See: cyclists. They managed to get between me & the grocery store twice & between me & home another twice riding about my neighborhood on World Naked Bike Ride. WNBR knows they are unsafe (because I told them). They will take no steps to allow people to be safe from them (such as publishing the route. I'd be asking to be murdered in my bed if I asked them to--shock horror--not strobe. The ADA isn't for cyclists).

-I can't go dancing. Because the ADA doesn't apply to religious dancers who think epilepsy is demons, either. That is a hill they'd choose to die on.

-I've had to sue a school because they wouldn't teach a professor to turn off a fucking light.

-I don't go places where I don't know everyone without a seizure (and me) literate person around. There's too much risk of triggers, too little risk of them giving a shit without a Real Person telling them to.

-I can't rely on first responders, so they don't count as seizure literate. Most paramedics have no fucking idea that there's more than one kind of seizure. Having a partial complex seizure & having 911 called is a great way to end up either shot or dead in restraints.

-I can't go to concerts. Not just the ones you'd think have strobe lights. Any of them. 

-I'm not going to the Bernie Sanders rally this weekend because having a partial complex seizure around someone running for office is a great way to get killed by their security, & there is no way any accessibility policy made allows for the existence of epileptics who vote.

-More and more 'attractions' are becoming inaccessible as people figure out how to make more shit strobe. Apparently Medieval Times has strobing swords. So much for authenticity.

-I don't go to movies without a non epileptic friend for similar reasons. Movies that should have warnings never do (looking at you, Mockingjay part 1. Also you were so close to getting it uncomfortable but safe & managed a hellscape. Heck of a job).

-Children are a danger. Because their parents, who are my age & grew up without strobing shoes or backpacks, apparently forgot that it is possible to have a childhood without these things. Try going anywhere without running into strobing kids.

-My sound triggers? Good luck avoiding them on the bus (because the drivers won't tell people to turn down their music, & everyone apparently wants to be judged by their music) or walking down the street (again, people want to be judged by their music & damn everyone else)

-I don't trust the Epilepsy Foundation with our ADA issues because they're so hung up on Perfectly Normal (EFA National? If you're reading this, I keep saying that because the person in charge of the Northwest chapter was all about the Perfectly Normal). If that's an organization's official stance I do not trust them with my access needs.

People. The Americans with Disabilities Act is not just ramps and braille. My access matters too. And people are so aware of autism that I could gag on their puzzle ribbons, so they assume that when I say I'm disabled, I mean that I'm disabled by my autism. And being Autistic does come with support needs. But being Autistic isn't the reason I choose to not do shit I want to do. There's things I have no desire to do because I'm Autistic & find them miserable.

But I don't have to choose to not socialize because of autism. I have to choose to not go all sorts of places because epilepsy. If you're here because you care about Autistic people, remember that 30% figure above. Do you care about all of us? If you're here because you care about Disabled people--well, epilepsy is way more social-model disabling for a lot of us than autism is. Before starting a new activity or sport I don't feel the need to warn people that I'm Autistic, though I don't pass. I feel the need to tell them I'm epileptic because that is what gets triggered. That is what people freak out about if they aren't told. That is the thing that's actually likely to be an issue in the activities I choose.

Where's my access rights?