#WalkinIssysShoes

Trigger warning: Discussion of ABA, quiet hands, whole body listening, etc.

I’m going to ask you to do something for a minute. Stop moving. Don’t scratch that itch in your left ear. Don’t shift your weight. Don’t frown with concentration. Don’t blink too much. Don’t yawn. Don’t stretch. Don’t fidget.

Don’t have a loud body.

Watch the clock. Has a minute passed yet?

Okay. Sticker. That wasn’t so hard, was it? Again. Two minutes this time. We need to be table-ready before anything else.

Oh, you moved. Quiet body. Sit still, don’t do anything. Two minutes.

Feel how you’re aware of how much you normally want to move. Feel frustration because you know you’re not allowed to.

Don’t frown. Happy face means happy days. Quiet body. Still. Two minutes.

Notice how it feels like you’re being set up to fail. Who doesn’t move at all?

Quiet.

Still.

Two minutes.

Think about how much concentration this takes.

Quiet. Still.

Okay, sticker. Good job!

Now, I want you to read the rest of this post with a quiet body and face. You can’t learn if you’re fidgeting, after all. No, look at me, look at the words. Quiet face, you need to show whole body listening, remember? Don’t glance away. Not even if you hear a weird sound. Quiet face, quiet hands, quiet body. Whole body listening. Look at me! Sticker, good job.

No, look at me. Don’t look away when I’m talking. I’m not done yet. Look at me. Sticker.

It’s hard, isn’t it? Do you feel how your whole body is rebelling? You know how you listen best. But I won’t listen. Because I want quiet hands, quiet face, whole body listening more than I want listening. Concentrate on it. I won’t stop and prolong things by bothering you about it if you do it right the whole time. If I know that you can’t both concentrate on my words and on whole body listening at the same time, I don’t care.

Now, I’m going to ask you to do some things. They will seem pointless to you. They’re not pointless, but the lesson they teach is not one you’re supposed to be aware of learning. Touch your nose. No, quiet hands. Touch nose. Quiet face. Touch nose. Sticker!

Five stickers, you’ve earned a break! Here, have a quarter of a cookie. No, you don’t get the whole cookie, you have to earn that. Anything you like, you have to earn. Imagine playing your favorite game in two-minute increments, interrupted with doing what I want. You don’t get enough time to do anything in the game. That’s earning!

Quiet face, whole body listening. Look at me. Sticker.

Are you frustrated that you don’t get to finish anything? Are you angry? Quiet face. Are you?

Feel the frustration of never getting to finish anything. Of never being able to just enjoy. Everything has strings. Everything is conditional. Even your body isn’t yours – if you protest or just refuse to do something, I’ll make you. If I’m not big enough to make you, I’ll get a bunch of my friends together and we’ll hold you down until you give up, so you understand that we can make you do anything we want to.

Imagine you go home, and it’s the same. Quiet hands, quiet face, always being tested, always watched. Isn’t it insulting?

Imagine your siblings don’t have to have quiet hands and quiet face and whole body listening. They can fidget and have attitudes and protest and look away and talk back and even outright ignore. Imagine it’s just you that’s expected to do those things. It’s just you that has to be managed all the time. Isn’t it unfair? When others tell you it’s not unfair, does it feel like everything you do, everything you are, is wrong?

Imagine people you care about, who you depend on, make snide comments about you. Not just condescending fake-enthusiastic baby-talk like I’ve done so far. Imagine it’s outright insulting. You can pick up on the insult but not on how. You get frustrated and angry. Your parent tsks and sighs and rolls their eyes.

You get angry. But you’re not allowed to show it. Quiet face, remember? Smile for me! Smile! Good, that’s a nice smile! Sticker.

Everyone else is allowed to fidget and move. Not you.

Quiet hands.

Everyone else is allowed to get so happy they can’t contain it. Not you.

Quiet body.

Everyone else is allowed to relax. Not you.

Look at me!

Everyone else is allowed to have fun own their own time frame. Not you. Your fun is rationed and controlled and earned in bite-size pieces that can’t be enjoyed because they’re only part of a whole that can’t be reassembled.

Sticker.

Everyone else is allowed to get bored. Not you.

Whole body listening, remember?

Everyone else is allowed to get upset. Not you.

Quiet face!

Everyone else is allowed to get frustrated. Not you.

Quiet hands!

Everyone else is allowed to get angry. Not you. Your anger is wrong always, no matter the cause. It’s because you’re autistic that you’re angry, and you have to be trained out of it. Not because any reasonable 15-year-old would object to being treated with condescension and having literally everything in their life, down to when and how long they can play video games for, micromanaged.

Bottle it up. Repress. Don’t feel.

Don’t  be happy, it makes you bounce and move. Quiet body.

Don’t be sad, it makes your face screw up. Quiet face.

Don’t get bored, you look away. Look at me!

Don’t get anxious, it makes you wring your hands. Quiet hands.

Don’t like things, they’ll use it against you. You have to earn it.

Don’t protest anything, no matter how unfair. It will be used to punish. You’re losing tokens.

Don’t feel. Don’t think. Don’t move.

Don’t be.

Don’t be you.

How long could you live like that before you exploded?

Walk in Issy’s shoes.

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Ally is a job, not a title.

So, other people have been saying this for years. I’m going to throw my own words at the idea. I’m low on spoons right now and so my “mespeak to normal-speak” translator is faulty. This piece will be more like my own natural writing voice and less like what other people usually understand better and so I apologize if it’s hard for you to read. I will probably come back and translate it into another post sometime. For now the words and the idea are important in light of recent events and I need to get them out so I can concentrate on school.

Many privileged people like to call themselves allies to a cause they believe themselves to be aligned with. Please note the phrasing on the last part of the sentence, it’s important.

These are the white people who say they’re anti-racist allies, the straight people who say they’re GBLQ allies, the cis people who say they’re trans and nonbinary allies and the abled people who say they’re allies to the disabled people.

Many people (me too!) run into this issue, where you assume (maybe not intentionally/consciously) that calling yourself a thing makes it true. But it’s not. I can call myself a bird and flap my arms really hard and tape feathers to my clothing, but it won’t make me a bird. I am a person. Calling yourself a thing does not make you that thing.

So, you can call yourself an ally all you want, but that doesn’t make you an ally. What makes you an ally is being an ally. Which I know is a tautology but:

Likewise, if someone as an abled person calls themself anti-ableist and calls themself an ally, but they bend over backwards to give the benefit of the doubt to ableist narratives (“they’re just ignorant” or “what if they’re in crisis? We have to help them!”), and they repeat ableist soundbites unthinkingly, and they talk over disabled people on our issues or allow others to do so, and they accept ableist stereotypes and they perpetuate ableist double standards, and they close their eyes to ableist jokes and behavior, are they really an anti-ableism ally? No. They’re not. They are, at best, someone who wishes us well as long as they don’t have to look hard at their own behavior.

By contrast, what about an abled person who questions ableist narratives, challenges ableist soundbites, refuses to accept ableist stereotypes, centers disabled voices in ableism discussions, makes their best effort to avoid ableist double standards, and calls out ableist jokes and behavior? That person is an ally. Regardless of whether or not they call themself one.

(similar analogies can be drawn across other axes of privilege but I’m talking about ableism here)

Ally is not a title you get to put on and not worry about again. It’s not like a college degree. It’s more like a professional certification. You have to keep working. Keep improving. Keep challenging yourself. The second you stop is the second you stop being an ally. It’s a job. Not a title.

You want to be an ally? Be one.

Want to call yourself an ally? Don’t be surprised if the people you claim to be allied to start calling you out on your shit.

Presuming competence goes both ways

Hat tip to Michael Scott Monje Jr for writing the line that led me to this train of thought.

The title sentence is something that’s been ringing in my head ever since I first read the linked poem, and it was hard at first to find the right words to explain why. But now I think I have.

Autistic and disabled people in general do others a grave disservice when we assume they’re ignorant in spite of evidence to the contrary. We do them the same disservice we protest against when it’s done to us. We presume them incompetent. We presume others incompetent of knowing and meaning what they say.

It’s wrong of us to do that. And we hurt ourselves to do that. By educating a brick wall over and over and over again, we waste our own time, energy and spoons. Those of us with PTSD have triggered flashbacks in themselves. People with mental and chronic illnesses have triggered flareups. Others, myself included, have triggered meltdowns.

We need to stop.

We need to accept that someone might know that what they say is harmful, know that it’s hurtful, know that it’s wrong, and not care. We need to accept that someone might know the full impact of what they’re saying, and mean it. We need to presume that others are competent to form harmful, bigoted opinions and to act on them in bullying and abusive ways. Even if they are otherwise seemingly-nice people.

We need to presume competence. We need to presume that others are capable of educating themselves, capable of thoughtful self-evaluation, and capable of changing.  And, as a corollary of the prior, we need to presume that if they do not after being given ample opportunity and in the absence of some reason why they can’t, it is not because they haven’t been educated enough, but rather because they choose not to.

I will no longer presume that people who act in abusive and bullying ways after being asked to stop have simply not been asked in the right way. I will have more respect for them than that. I will presume competence, and realize that they mean to hurt, they mean what they say, and they are choosing to behave that way. People can choose to be mean.

Presuming competence must go both ways.

Two must-reads on the topic of my previous post, and a recommendation

Must-read the first, a necessity for any readers with disabilities: It’s time to accept that they hate you, by Michael Scott Monje Jr.

Must-read the second, another perspective on what went down on the TGPA Facebook page on Monday: “No, Fuck YOU!” When Your “Allies” Are No Longer Your Allies. by Erik at Autistic SHS.

For parents wondering where a good alternative Facebook community is: Consider Parenting Autistic Children with Love and Acceptance and We Are Like Your Child. They’ll be the ones I promote to parents from now on.

#IStandWithKassiane

Okay, so, it’s with a heavy heart that I announce that no longer will I recommend the Thinking Person’s Guide to Autism book or community as if they’re on my mental list of good parent resources. They’ve been demoted to “less bad.”

Why?

Because of their continued, and worsening, treatment of autistic adults on their community facebook page, which came to a head last night and the night before. For a long while now, autistic people have been held to a higher and higher standard than non-autistic parents in the comment threads of TGPA. It had gotten to the point that some autistic users complained of a seeming “parent’s code” that appeared to prevent real criticism by parents of other users who were parents.

This phenomenon was apparently out in spades Sunday night (I was not there and so cannot speak to it myself) and was definitely apparent last night. While parents derailed and condescended with impunity, Kassiane of Radical Neurodivergence Speaking was banned for (or so it looked to me as a lurking observer) pointing out, repeatedly, the double standard in how autistic non-parents and parents were treated.

Condescending, snide posts by parents went by with impunity (many are, in fact, at the time of this writing still up. One post by a parent talking about those who were upset with her reads used scare quotes to question whether or not people upset with her were in fact adults and repeatedly in more than one comment contrasted that with “reasonable, calm” people she approved of, as just one example), even as they derailed a thread that was supposed to be about how a screwup the night before affected autistic people and how the autistic people wanted things to improve. When moderation action was taken, it came down on posts by autistic posters (not just Kassiane) before it came down on all but the most egregious of parent comments. This on a website that claims to demand “respectful” disagreement.

By contrast, strongly-worded but fairly respectful comments by autistic adults were deleted. One by Cara Creager said essentially that they need to work harder and enforce moderation standards more strictly on parents if they want to be a safe space for autistic adults. That was deleted. The comment questioning whether people disagreeing strongly were competent adults, on the other hand, is still up.

Parents turned a “sorry we messed up, what can we do to make it better?” thread into a “FIX MY CHILD!” thread with total impunity. Adult autistics had their comments deleted and were chided for objecting to this (apparently, respecting the topic of discussion is something only autistic people have to worry about over at TGPA). Kassiane pointed out how this played into the double standard she had been talking about the night before (I was not online Sunday night and so am missing some context here). Shortly thereafter, Kassiane was banned. For “bullying.”

In summary:

Not banned:

  • A parent who questions the mental competency of those who are emotional in their disagreement, who condescends to other adults, and who characterizes emotion as abuse. Same parent acted with disdain towards adults who questioned her insistence on speech over communication.
  • Parents (plural!) who took a “how can we do better?” thread and made it all about them and asking autistic people to, among other things, view video of potentially abusive situations.
  • A parent who wrote about what a burden raising their child is, who scolded autistic adults and exhorted them not to judge when they were writing about the problems with ABA.
  • Antivaxers.

Banned:

  • An autistic advocate who helped build their page, calling them on a double standard in an admittedly abrasive fashion.
  • Several autistic people who protested the banning.

I wish that I could tell you to go look at it yourself, but FB hides posts by banned users and I didn’t think to get screen shots. If it turns out that someone else nabbed screen shots, I will update this post with them.

So, for now, they are better than Autism Speaks, but that’s a very low bar to step over. And that’s why I won’t be promoting anything by TGPA anymore – either here, on Twitter, or on Tumblr. I don’t want to be associated with a place that says it’s okay for parents to talk over autistics and ignore the purpose of threads and condescend and question others’ mental competencies… but not okay for autistics to stand up for themselves or to point out double standards in moderation.

I urge TGPA to rethink the enforcement of their moderation policy and their banning of a user whose main crime was not sugarcoating the truth. For my part, I want nothing to do with them until they clean things up there.