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.

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.

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?