How dare you

(this post is a response to what I’ve been reading in Ivar Lovaas’s ME book, my currently private liveblog responses to which will be cataloged here tomorrow)

How dare you ask for love
When you have none to give
Unless Children can first perform for it
“Touch Nose” “Good!”

How dare you demand play
Under your rules
And deem their pleasure
A bizarre distraction

How dare you command a smile
But condemn a genuine laugh
Insist they find joy in their torment
While restricting how they show it

How dare you emphasize your needs
While capitalizing on theirs
You insist you need time off
They must always be on

How dare you say they manipulate you
You say their tantrums are communication
But not valid examples
And then you isolate, abuse, neglect until they show affection

How dare you use their bodies
Keep them hungry so food is a reward
Water, too.
Except when you need desperation.

How dare you talk about abuse
Like it’s therapeutic
And egregious examples
Like wastes of time at best

How dare you tire after your week
Of forty hours
And demand that a smaller human
Provide you with sixty

How dare you instill an idea into a society
That an entire cohort of people
Deserves all of this
And be called a hero

How dare you hurt these children
How dare you hurt these people
How dare you hurt my friends
How dare you hurt my people

How dare you take a person
Not someone who may become like a person
A person
And break them

How dare you take a heart
Ready to love
Only wanting yours
And break it.

 

Standing Side by Side with Giants

I recently dipped my toe into a project. A project to write a book on the history and culture of Autistic people. As soon as I tentatively, quietly announced this project, my fellow Autistics jumped to ask if they could help. People with blogs that have followers, people with advanced degrees, people who have written on Autism and in general in a professional sense. People who, in short, would know what the hell they were doing writing the history of Autistic culture. Me? I’ve known I was Autistic for 4, 5 years. I’ve done my best to learn as thoroughly as I can,  but I’m small.

Standing next to giants.

Maybe they don’t know they’re giants, and maybe they’re not. Maybe they’re a bit smaller– half-giants, orcs, some of them high elves–  but to me, the little one looking up, they’re skyscrapers. And right now I’m standing shoulder to shoulder with them.

None of them told me not to do this project. That I wasn’t qualified. They offered help, and I’ll take heaps of it, but nobody even suggested it wasn’t my place.

And there’s that phrase, standing on the shoulders of giants, that implies the giants came before you and paved your way. But in the Autistic community, it seems that the giants kneel down and hand you your bricks and mortar, and right next to you lay down the roads in tandem.

Maybe that’s part of Autistic culture. I’ve heard it referenced before, anyways. That social hierarchies are passé and working together, younger and elder, is how things should work.

Maybe that’s why I want to write this book.

Maybe that’s why I like it here.

A – Z of Autism: F is for Fighting Fire

There are a lot of messages in our culture about anger.

Basically none of them are good.

“Don’t fight fire with fire,” “hate breeds hate,” and the more recent, “love trumps hate.”

Sure, we get the messages on righteous anger, on passion. But more than anything we’re told that anger is useless at best, invalidating to our cause at worst. In the name of not dancing around my point, I’ll just state my guess as to why this is now.

Anger works, and the people in charge (of whatever power structure we’re fighting) know that. They know that anger, that passion, is what makes change happen, and they don’t want that. So they demonize it.

Or, perhaps, it’s just that anger makes people confront the demons that live within them, and we don’t like that. If someone’s angry at us, either we or they have done something wrong. It’s much easier to say that anger is the demon than to point at anything within ourselves.

The thing is, though? Anger works. Anger works so well. Active, angry passion is what shakes people out of their complacency long enough to learn. It’s what wakes people up to the fact that their actions are not okay. It’s what makes them not make the same mistake in the future.

Passive love and subtlety do almost nothing, save for win over people who are close to our side anyways. But when someone wants you dead, no amount of love will make them change. You could love them with all of your heart and more, and the only one who will change is you. You’ll learn. You’ll learn to be bitter, to be jaded, and that nothing you ever do will work. You’ll learn that you can’t change the world.

That isn’t true, though. It just takes anger. And sure, you can’t yell at someone enough that they’ll start thinking you’re a person. But you can yell at them long enough that they’ll know they can’t get away with verbalizing such beliefs.

And for those in the middle ground? Those who aren’t vested in their belief you’re not human, who just kinda… grew up that way? You might be able to  reach them with love, but they may just take your kindness as an indication that your concerns aren’t serious, or your passivity as a message that you’ll continue to tolerate them regardless. After all, if this was serious, wouldn’t you be mad? And yes. If you get angry, they may go ahead and say that you invalidated your own concerns with your emotions– but they will never be able to say you weren’t passionate.

And passionate we must be– should be. Because they do want us dead. They would prefer we had cancer (and to illustrate how insidious this is, I wasn’t even looking for creepy, murdery parents’ books when I found that one). Indeed, many parents of Autistic people make us dead, because it’s much better to be a murderer than have a living child that couldn’t live up to your exceedingly high expectations. Especially with how often a murderer parent faces little more than a slap on the wrist for their crime. Sometimes they want us cured, or never born. We can go back in time to the olden ages of the early 2000s, when the Hear Their Silence rally spread hatred for those of us already living and extended a threat to those yet to be born, with a phone number of 1-877-No-Autism and  message of unity around, I don’t know, our graves? You can see some emails around it here and here.

Do note where the anger really stems from, though. Either you call things out so kindly that nobody hears your voice, or you get angry enough that they start shouting back.

And again, the middle ground. The middle ground can be the hardest to reach with kindness, because you’ll approach them kindly, and then they’ll set up a Meeting to Discuss things after the damage is done Kindly, and you’ll discuss with them Kindly and they’ll discuss back Kindly and you’ll have another Kind Meeting but the thing is, at this point the damage was done about a month ago and there’s a good chance you’ve still made no progress at these meetings where you’re allowed no passion, no bite.

But the minute you’re shaking in front of an authority figure, your voice cracking, your eyes blazing in fury, and you tell them outright that what they’re doing is wrong, you get results.

So I’ll continue to be angry. I’ll continue getting results. And I’ll have friends, new activists usually, who will wonder why I’m so angry. Who will insist on trying things their way, the nice way, who want to be friends with everyone so that we can all get along.

I’ll let them, too. Because I had to learn, once, that kindness is moot when someone wants you gone.

I’ve been kicked off of a blog network for calling people out nicelybecause those people were my bosses. I learned they’ll find a way to demonize you if they don’t want to hear your message, that they’ll remove you from sight regardless so you might as well take some blood with you.

I’ve learned that asking for written-down-rights to be respected in a psychiatric hospital leads to threats of solitary confinement. I’ve learned that backing down in fear leads to token gestures of goodwill while they still deny you basic personhood. What if I had been a brave child? Taken solitary, screamed and flailed against the walls in anger? I probably would’ve gone on to sue the hospital like I intended. But, the thing about those proper venues of anger– legal suits and such– is that they take energy that a mentally ill 14 year old doesn’t have.

I’ve learned that friends will leave you and groups will ostracize you when you ask them to be nicer about mental illness. I’ve learned that anger can’t change that, actually, but a burning vitriol will shine a light on who your real friends will always be. While, you know, the fake ones kick you in the gut.

So I’ve learned this anger. But the thing is? I shouldn’t have had to. My elder Autistics already learned these lessons on anger and effectiveness. If I had only met them sooner, I could have learned to harness my anger, grow my anger.

Maybe that’s what I’m doing now. I’m no elder, but I’ve been doing this for a while longer than many of the Autistics I know in person. Maybe I just want to write this out so they know why I’m angry, and know that they should be too.

And yes, you have to know how to use your anger. There’s a time and place for everything and nuance to every skill. But you can never learn to wield a weapon that you won’t pick up.

 

A – Z of Autism: E is for Endless

This goes out to all of the Autistics who spend more time fighting for their right to love puzzle piece rhetoric and the idea that they’re “high functioning”, more than they fight Autism Speaks, pathology, and paaaaarents.

My energy is endless.
I can do it all.
My possibilities, boundless;
I will never fall.

Except that I will,
Except that I do.
All this hate’s gonna kill,
Both me and then you.

But me first, I say,
Because I have the fight,
You can fight another day,
I still have the might.

And so I will,
And so I do,
And I’ve had my fill,
So where are you.

Are you waiting over there,
To tell them not to cure me?
Or curled up in your comfy chair,
Hoping that they won’t see?

My fight is endless,
And I can persist.
I can keep on standing,
I can make myself resist.

But I need you too.
I need you to listen.
Put down the blue,
Leave the puzzle prison.

Your functioning’s not high,
Those words pull me down low.
Why superiority, why?
When you won’t even go.

You won’t go to town,
On the ones who want us gone.
You hardly show a frown,
When they use you as a pawn.

But my fight is endless.
Yes, the fight is indeed.
But my power’s not boundless.
I, too, have a need.

A need for community, 
Which has my back.
I have no immunity.
Together, we must attack.

But you won’t,
Because I will,
But you don’t.
Can’t take the pill.

That they hate you.
They want us all dead
And you won’t tone them down,
You can’t even touch red.

I’m so alone,
And it all so much hurts.
I should have known,
You won’t even spare words.

My fight is endless,
But I can’t keep trying.
I’m tearing myself apart,
I want my chance at crying.

My fight will have its end,
So take the baton.
My own wounds I’ll tend.
Now carry the red banner on.

A Message to Certain Autistics

A message to those of you who like puzzle pieces. Who identify with puzzle pieces. You are not a puzzle. You are a full person who is not missing pieces. You can say that you just find the puzzle cute; I can tell you that a history of dehumanization is not cute.

To those of you who think Autism Speaks is okay. That they are your friend. They are not your friend. They are trying to end you, they want to cure you, and they want to profit off of the suffering they inflict upon you. The last thing they want in the world is *you*

To those of you who use functioning labels. You want to differentiate yourself from the “other.” You want to make everyone know that you’re different from the bad Autistics, that you’re one of the higher level Autistics. Maybe you just want precision. Well, you’re being more imprecise with your labeling of people in binary high/low sense. And there is not a meaningful distinction between all “low” and all “high” Autistics, and many of us can be both at different times. We are all siblings on the Autistic spectrum, we don’t need to divide ourselves.

And a message to those of you who are okay with person-first language. Maybe it just looks better grammatically to you. Maybe you just lack a preference. But “Person with Autism” are not our words. They are the words of people who want to take the Autism out of the person, who can’t see a person if they see Autistic first. They are the words of accommodation offices and bureaucracies that want to appeal to parents. They are the words of parents. They are not the words of us, Autistic People.

So yeah. I’ve noticed these problems all over, primarily by new-to-the-culture autistics, and I think we need to sort them out. Playing with the tools of our enemy gives them legitimacy, and it’s not okay.

A – Z of Autism 2017: D is for Danger

Being an advocate is scary.

Sometimes it’s dangerous.

Yesterday  I had to disrupt a panel about Autism that lacked any Autistic people.

I had the danger response. I had the shaking and the stuttering and the wanting to run and cry but I stood and I fought against something that was dangerous to my community. Something that, as the case is every day in April, would spread misinformation and fear and make people want us dead.

But I spoke up. And I’m working to fix it. Because I refused to believe that there was no danger in talking about Autistic people without us. I refused to believe it would be okay if I said nothing.

The world is a dangerous place for an advocate. It’s scary. But we can make it less dangerous.

A – Z of Autism 2017: C is for “Cruel”

ABA is so kind. It’s doing such a service. It’s the only compassionate option for those defective, damaged creatures…

“That’s cruel. ABA is cruel.”

Compassion! The only option! It’s not like that!

“Yes it is and it’s cruel. You can’t dog train a child into being something they’re not.”

So you want them to be a damaged human being?

“No, because they’re not, and insisting they are is cruel.”

Well I don’t care.

“Shove it up your ass, then, if you don’t care that you’re abusing children.”

Oooh, who’s being cruel now? To me?

“You want to see cruel? I could tell you you’re a glorified conversion therapist working on an even more marginalized population. I could tell you you’re a circus animal trainer who works on humans to make them jump through flaming hoops, who doesn’t even care when they get burned. I could tell you that you’re a PTSD-vendor, a trauma-trigger, an abuse machine, a suicide pusher.

“I could be nicer. I could tell you that you’re just ignorant, willfully so even, about the harm you’re doing. I could tell you that if you didn’t see the harm you were doing you either weren’t looking or couldn’t understand because you couldn’t see the subject as human. I could tell you that you’ve been fooled to be a servant of people with evil agendas and you’re one of those folks just doing their job.

“I could tell you that your job is to break people. Real people. You take a hammer to the perfectly fine Autistic exterior and try to break it apart to find the real person inside. But you find nothing but a shattered child, because the real person is lying in pieces on the floor.

“I could tell you all of that. I could tell you you hurt people. That you break people. That you’re a monster.

“But you’d just call me cruel.

“Or maybe you’re looking in a mirror.”