Thursday, December 28, 2017

"If my kid could do that I'd consider them cured". But would you though?

I've been hearing this for years. People older than me have been hearing it for years. People younger than me have been hearing it for a while now. What is it?

"If my child could do <thing>, I'd consider them cured," where <thing> is anything from arguing online to going to a protest to giving a presentation to writing a book to successfully running away from their parents' house in fear for their lives.

If their child could do this one thing, they'd consider them cured. People with a whole wide variety of support needs hear this--I've seen it said to people with a job and a house and a drivers' license and to people who need one on one support to communicate. We're all cured, apparently, because we said fuck or because we said that society is broken, not us.

Let's examine this though. I'm going to pretend I didn't notice this pattern, of who gets told this and what things are grounds for being kicked off autism island. We are going to walk through this as though it is a good faith statement, rather than a silencing tactic. Let's do this.

Cracks knuckles

The way this part of the post is going to work is as follows:

I will type up a thing I have been told indicates I am no longer autistic. I will immediately follow it with a disabling trait that, apparently, is mitigated by that thing which someone so helpfully told me means I am cured. Ready?

"If my child told me he didn't want a cure I'd consider him cured

That's a real neat trick there. Also, the phone call to get my nightmare meds refilled that I've literally not been able to make just made itself. Thanks!

"If you were still autistic you couldn't give presentations at conferences.

I note that you don't challenge the autism of people who say things you want to hear, and now thanks to your declaration, I can no longer hear the fluorescent lights. Wow that is so helpful you have no idea.

"If my child was so sarcastic I'd assume he was cured."

Holy shit now the ability to hold down a full time job just happened! Wow, your assumptions are fucking magical!

"My son never tells me he thinks this therapy is abusive. If he did I'd know he was cured."

You want to reconsider that one?
You probably should.
But. Okay. Looks like because I called abuse, abuse I can now, in fact, feel all my appendages without moving them, instead of sitting and just hoping they don't float away so some therapist doesn't grab them. Happy now?

 "If my child vanished from my radar when I threatened to have him committed I'd consider her cured."

You know this is another one that's going to have my readers wondering what the hell kind of autism parents I run into, right?
You're going to stick to this one too? Alright then.
I have been cured of my inability to wear a whole wide array of clothing considered "appropriate for the office" because I vanished out of self preservation.

"No one autistic can go to protests! If my child did I'd consider them cured!"

Hot damn, look at all that ability to notice chores need doing and actually do them in the same day I just developed, thanks to my hatred of injustice.

"MyChild can't write ascerbic essays on the internet. If he had a blog I'd call that cured!"

Aside from the obvious points that your child is eight and doesn't have an internet carpet, which hadn't been vacuumed since I moved in until your pronouncement, thanks you.

"My child would be a recovery story if she was arguing with strangers on the internet."

As an actual 'indistinguishable from peers' kid can you please not?
That's too much to ask I see.
Suddenly small talk is an activity that makes sense to me. Thank you for your expertise.

"If my child ever corrected me, I'd praise Jesus because it'd mean he was cured"

I'll praise Jesus if your child feels safe to correct you. Sorry. That was rude. But apparently I have a sense of time after all, and my bills all get paid without endless alarms, so that's fancy.

"If my kid had interests like yours I'd consider them to be neurotypical."

Umm I don't even know what to do with that. Am I not a white tech bro enough for you? I guess? Sorry I can do a cartwheel? And lo, I have never and will never again lose language, all because of said cartwheel?

All of these are actual things people have said to me or to people around me. I did not use other peoples' autistic traits though, I only used mine.

So let's pretend these things were said in good faith (you can see why I have a hard time with this yes?). What do they have in common? Not much, except that someone is denying my neurology because of the challenge to their sense of their own authority.

First, that's kind of a fucked up way to respond to someone not taking you as the authority in all situations. I mean, really fucked up. You'd not do that to someone you didn't consider fundamentally inferior. Don't try to lie to me, we've had the good faith portion of this conversation. That's not how people relate to equals who challenge them. They meet the challenge, not attack who the person is.

Second, the things that mean I am not autistic in these peoples' eyes? Have literally nothing to do with autistic traits. Telling you that vaccines don't eat babies isn't magically curing my sleep (non)cycle. Knowing a non insubstantial number of impolite words isn't feeding me things that aren't chicken nuggets & Kraft dinner.

Do you see what I'm saying?

Is it really good for your kid to be judged on how well he kisses others' asses? Is that what you want? Do you want her disabilities to be ignored because she didn't make some random person on the internet feel comfortably superior to her? Do you want them to be denied support because their truth is uncomfortable, and they are able to speak it?

Consider that before declaring anyone cured.


Tuesday, December 5, 2017

Open letter to John Elder Robison, on his comments on To Siri With Love, among other things

apparently this is currently an open letters blog. Okay. Um. So. That's a thing.

So. John. Pull up a chair.

This has been a long time coming, and while the proximate cause is your clueless comments on To Siri With Love, that's just a last straw.

John, I know you think you're an expert in neurodiversity, because abled people tell you that you are. It feels good, right? Being accepted by the people who you have been told your whole life you should be like? So I can almost see the temptation to try to play reasonable with them, even when they're unreasonable.

Here's the thing, John: when you suggest that maybe the autistic community should try to listen to parents, to see things their way, you are giving away your newness. That has been done. That ship sailed, over and over and over did it sail. We gave up on that before you even heard the word Aspergers. We tried it. It failed. We tried again. It still failed.

So. John. Let me give you an analogy, because I sort of know how you feel. I know what it's like to be given standing and respect I didn't actually earn, to be assumed to be more skilled or in the know or whatever than I am. So here, let me try to empathize with you.

I do a martial art where a lot of things are based on seniority--where you line up depends on your rank. If you and other people are the same rank, who got there first? If you got there the same time, who got to the previous rank first? Who started first, it ultimately goes back to, if it needs to. Both kid's and adult class work this way, but the ranks are mostly the same--youth has a couple more, but kids melt into adult class seamlessly at whatever their rank is when they hit the magic birthday.

Bear with me here, John.

So. I'm mid ranked, I guess, good enough to be impressive to the untrained eye but no expert. This time along I am working with a bunch of kids who also just came up, getting ready for a test. Technically all these kids are senior to me.

Because I am an adult, and because I am comfortable teaching movement based things, people assume I am working 'with' these students. I am not! And it's really important, John, that I don't forget that. They are young. They give me back just as much as I give them. They know the protocols better than I do, even if I am more comfortable with some of the movements. If we need to puzzle something out, they are right there with "maybe it's like this?". If one student has a ridiculous, wrong idea that seems like it should make a technique works, but it won't, someone (or several someones) are there to say "that sounds like a good idea. It doesn't work. We can try it, but this is what happens".

It's vitally important that I remember, John, that these kids are my equals in the community, but also that within the community, if we are needing to split hairs, they're my seniors. They know things I don't. They've got years of experiences with the art that I just don't have. I have experiences in other things, and they transfer over sometimes. Sometimes they are drastically wrong for the objective we are trying to achieve.

It feels good to be told that it's so nice that I'm working with the kids. I know how great you feel when people treat you like an authority on neurodiversity. But there are a lot of people whose experiences you are ignoring, you are refusing to learn from, because the ego of "I'm an expert! I got thank yous and a shiny fellowship and everything!" gets in the way of allowing oneself to learn.

We get people now and then, John, who cannot deal with the fact that children outrank them. Hell, we get people who can't deal with the fact that I outrank them and I'm a very young looking mid-30s. This doesn't go well. They don't learn things. They embarrass themselves. If they represent our club at workshops and such it can embarrass the whole community, because they're fundamentally not understanding what we are about. And this not understanding, largely born of ego and wanting to be respected more than they want to learn, keeps the entire group back.

John, you aren't doing us any favors when  you suggest that we need to entertain notions of throwing kids off bridges or involuntary sterilization or any of that. It's not actually reasonable. You're not representing the neurodiversity movement. You are vastly misunderstanding it for your own short term gratification. You aren't doing our next generation any good. You're hurting us all, John, and from here it looks exactly like it's for short term ego boosting 'respect' to the detriment of all of us.

You want to represent us? Then represent us. But you have to start by looking at who came before you and what has been done after you, not just what will make your life easier.

Neurodivergent K

Saturday, December 2, 2017

Open letter to the Democratic Party Re: Your Fundraising Emails.

Dear National and Local Arms of the Democratic Party,

Like many Americans, I get a lot of emails. Like many Americans who care about things, I get a lot of emails asking me for money. Like a lot of Americans, I get a lot of emails explicitly from you demanding my money and my action.

Democratic party, here's the thing: you send me emails that say "Don't let the GOP <do awful thing>" pretty much on a daily basis. And I am not the one letting the GOP do anything.

That's on you, friendos.

Even before the Democratic party establishment latched onto "they go low, we go high" as a failing-to-rally cry, the strategy of caving to Republican plans was very much in place. Democratic party, even if I had money--which I don't--I wouldn't give it for you for the purpose of fighting my battles. You won't fight them.

In my lifetime there's not a single battle I've seen the party truly fight, you see. The Overton Window keeps getting pulled right because the Democrats propose something, Republicans say "ha ha no" and you say "oh ok let's compromise."

Your compromises, Democratic party, are what have led us to a place where people with disabilities, who were already in deep poverty, are now likely to lose our healthcare and our freedoms. You let this happen. Your compromises, Democratic party, are why most of my generation is drowning in student debt and will likely never resurface. Your compromises are why education and health care disparities are so rampant. Your compromises are a big factor in having so many wars that we shouldn't have had, and in our returning veterans being abandoned when they get home. Your compromises contribute to voter suppression, which especially effects people of color.

You make choices, Democratic party, that screw over your base, again and again and again. You make compromises that will ruin, if not end, our lives, in this "appeal to the middle" fallacy. You aren't going to woo any Republicans, Democrats. You aren't. You know that; if you didn't you'd be asking them for money. You try to get blood from a turnip (that turnip being your base) after you already sold us out, and for what? So you can say you compromised? That you were a bigger person?

Time to stop being the bigger person, Democratic party. Time to do your damn job and look out for your constituents. "At least we aren't those guys" actually isn't good enough.

And you're going to have to do it without our money. You already took every dime and wasted it doing your best impression of a doormat.


Sunday, October 22, 2017

The Betrayal of Divergent: an open letter to Veronica Roth

Alyssa over at Yes That Too has written and is writing a fair bit on the topic of how Divergent could have been empowering for our community and instead it was a betrayal. A presentation I did brought it back up to the top of my mind, so here is my contribution to the Disability Discussion on Divergent.

 Dear Ms Roth,

It has taken me years to write this to you & now I'm doing it almost on impulse all in one sitting. There's things you're probably tired of hearing that I couldn't figure out how to avoid doing, so I'm not going to avoid doing them. Instead, I am going to speak sincerely, from my heart, about the impact your work had on me and the impact it could have had.

The first thing I couldn't figure out how to do, Ms Roth, is how to not compare Divergent to Hunger Games. I'm tired of hearing people fabricate similarities beyond the obvious (both driven by strong teenage girl protagonists?) so I can't imagine how tired you are of it. But I can't, because part of explaining what Divergent could have been for me is by comparing it to what Hunger Games was.

If we are being brutally honest, I'm mostly a Katniss. Katniss in the books looks like me. Uncannily like me. We have similar physical abilities. We figured out how to survive because we had to. We are both, if I may flatter myself, accidental revolutionaries and unintentional symbols rather than people to an unfortunately large number of people. I'm not overthrowing any governments, but I do find myself saying "who are all these people and why are they behind me?" more than once a decade. And I'm introverted, socially awkward, and good with a bow.

But Tris isn't not relateable, nor, if I am being honest, is Four. Like Tris I have multiple aptitudes (and Amity isn't one of them). Like Tris I'm an adrenaline junkie. Like Tris I'm bravest when it's for someone else. And like Four it's not so much that I'm naturally brave as that the monster under the bed lived in my home and controlled me until I could get away. (Incidentally, touching on abusive parents who are well regarded by the community was incredibly important for me. Everything shies away from that. You confronted it. That mattered to me.)

The Dauntless manifesto didn't just speak to me, Ms Roth. It sang to my soul. The saint I was named for said "I hate silence when it is a time for speaking," and the Dauntless manifesto took that and spread it out like a secular profession of faith. I believe that the cowardice of good people is what lets injustice prevail. I believe that it is my duty to shout when the person next to me can only shake. I believe to the core of my being in ordinary acts of bravery, in action, in walking what you talk. I believe that silence is assent and that it is better to die on your feet than live on your knees.

I thought I was going to be getting lines tattooed on my body, because the words you wrote are my moral core made poetry.

At least that's what I thought until the end of the second book.

Let's go back to the title a moment. Divergent. To differ from what is expected. I've been using Neurodivergent as a self identifier since I was Tris's age. That's a long time. I am Autistic. I am epileptic. I have C-PTSD (Four and I have that in common). And when you are neurodivergent, you learn to hide--just like in the world you built, the Divergent must hide.

But then we got to the end of the second book.

I can't put this nicely, Ms Roth: you used a word that my community is quite attached to and used it to sell us eugenics.

That's right, I said it. But so did you, though not in those words.

In the world you created, I wouldn't exist. I have genetic conditions that certainly would have been engineered away before personality traits that people don't like (as a biologist, I can tell you that would be impossible anyway, but I'm not here to lecture your science. I'm here to express betrayal that you started off so well and then gave me eugenics).

In the world we live in right this minute, Ms Roth, Nazis are on the rise. Eugenics never went away in the US. I know you aren't aware of disability issues at all, but forcible sterilization still happens to disabled people every day. People are given worst case scenarios about pregnancies that might have a disability, to encourage people who otherwise want that child to try for one that isn't defective. There's places where it is illegal for disabled people to have sex. People murder their disabled children with near impunity. People deprive disabled people of sex ed and of opportunity to develop romantic relationships if they so choose. The barriers to parenting while disabled are enormous. People make sure you know that a child like you is the least responsible thing you could possibly create.

Nazis are literally marching in the street. I am not being hyperbolic; they are carrying swastikas.

And you handed us a pretty blonde girl who is the pinnacle of perfect genes, hidden in a wholesomely gritty young adult post apocalyptic speculative fiction trilogy. That's some really unfortunate implications.

The betrayal, Ms Roth, the betrayal. It cuts. This isn't a simulation. This is real. And the reality is that your popular series undermines my right to exist. That's wrong. I matter.

I believe in bold deeds. I believe in bold words. And I believe that ignoring the eugenics propoganda buried in a popular story for my comfort is an ugly, cowardly lie.


Neurodivergent K.

Sunday, October 15, 2017

Lies We Need to Stop Telling Our Kids.

There's another post I was supposed to be writing, but things happened and I ended up writing this one instead. Oops. The general ideas of this one have been percolating for a while; a conversation with Chavisory of Chavisory's Notebook helped me finally crystallize it into words instead of free floating irritation at the state of things.

There are a couple lies we tell autistic kids. Kids with disabilities in general. All kids, to an extent. One of them seems to be aimed more at kids who we presume are girls, whereas the other one we hold onto a lot longer with disabled people than with abled people. And we have to stop.

First things first.

Folks, we have got to stop telling girls, women, disabled people, marginalized people that if they follow the right script they will be safe. I saw a white autistic man at a conference I just went to flogging his solution to police violence. Buddy my dude, the Latina obviously neurodivergent little girl you are talking to is not going to be safe from the police if she does what you say. That's not how this works.

So many 'social skills programs' seek to be the cheat codes to a safe life. If you do what this guy says, you won't get shot by the police (not necessarily true). If you use exactly the right words, no one will bully you. This set of words is protective against medical mistreatment. That set of words will protect you from racial aggressions. If you do this little dance just right, you are safe from racism.

I mean, hell, look at peoples' responses to survivors of sexual violence. The first thing they do is ask "well what did they do to deserve it? Did they give the perpetrator the wrong idea?". That's the first response, regardless of disability of the victim. As a society we have bought into this bullshit idea that if you perform The Safety Dance correctly, if you do all the right things, say all the right things, you're safe. You're safe from bigots. You're safe from predators. You're safe from people running the stop sign.

And that's a lie we have got to stop telling people.

And then there's the second lie, which ties into the first in that it prevents people from responding when casting the circle of protection doesn't work.

Stop telling your children and your clients that 'appropriate' is a steady state. Appropriateness is situational. There are very few things you can do that are always appropriate or always inappropriate.

"I don't like that" and "that is inappropriate" are different things, okay? But the people who are tasked with teaching us to navigate the world don't want to deal with situationals. Rather than say "that's annoying" or "I don't like that" or "sometimes that's ok but sometimes it is not" they tell us it's inappropriate.

Hilariously enough, oftentimes the cry of "inappropriate" is used once the abled person in the situation has failed to convey that something is actually inappropriate. An example that you're all sick of but I am going to keep using until people stop making it so available:

A neurodivergent man traps neurodivergent, and sometimes abled, women and people he thinks are women. He wants a girlfriend. For some reason no one has told him that you can't just corner people and try to touch them and whine at them until they agree to be your girlfriend (this is always inappropriate. There is no people or species that courts like this). People have told him nicely to cut the shit, and have been told it's inappropriate to use that language. People have screamed tonelessly to make him go away, and been told it's inappropriate. Someone finally knees him in the fork, and is castigated for how inappropriate that is too.

There's only 2 people being inappropriate in this story: the man who thinks he can whine someone who said no into dating him, and the almost certainly neurotypical person who is lecturing people on doing what it takes to extract themselves. There are, in fact, situations where kneeing someone in the fork is the most appropriate way to go.

Even in less extreme (though this isn't extreme; find a disabled woman or person read as a woman who has been to disability events and they have stories just like this) circumstance, marginalized people are taught from day 1 that resisting awful things is 'inappropriate'. Racialized children, queer children, disabled children, on and on and on. Defending ourselves is 'inappropriate'. What's actually inappropriate in these situations is how the people who wave that stamp around don't even care until they take matters into their own hands.

Words mean things. Inappropriate isn't a blanket category for a thing. Yelling is always loud. It is not always inappropriate.

Say what you mean.

Stop lying to people to get out of uncomfortable situations for yourself.

Sunday, August 27, 2017

"No one will be here for my child when I die"...well why is that?

If you want to lecture me on notallparents this is not the time or place. Yes, every parent who was sending my friend unsolicited PMs that were really vile. Yes, every parent who knew about that but elected to yell at autistic people instead. Yes, every parent who is friends with parents who behave these ways. Yes, every parent who buys into these ideas. If you feel attacked that's a you problem, for you to solve. Taking out your bad feels on me proves my point better than any words I can use do. So don't live down to expectations, just this once.

We're going to talk about a justification parents give today for basically every awful and questionable thing they do to their child, and to those around their child:

"No one will be here for my child when I die."

That is not an unfounded fear. You're probably right. No one will. Or very few people will.

Now you're going to get uncomfortable folks. We're going to talk about why that is. Spoiler: it's largely your fault. You engage every day in actions and attitudes and behaviors that are going to fuck over your child years down the line.

Let's start with the ButtServices!!! argument. Y'all say and do all sorts of things, many of them cruel, and blame your lack of services. You fight for services "for families". Ultimately, the fight is constantly for services that benefit the parent, that make their lives easier. Don't look at me like that. You're the ones saying that you don't get services or that families need more services. You are the ones centering yourselves in the fight for services.

So what that means is? Your child turns 18 or 21 and no longer has services! Because they were all about you! This whole time they were all about you! Adults are well and truly fucked in the developmental disability system because everything is geared at making the lives of the Real People around us easier. Disabled adults don't get much at all. Too much is parent centered. There are agencies that allegedly provide services through the lifespan that will only interface with parents. It's true!

So that's a thing to be proud of I guess. You've built a self fulfilling prophecy where services are concerned. Your child won't be able to access them without you, you're absolutely right, because that's how you & your cohort want it. That's how you fight for it. You don't get to tell me that's not what you want until you start fighting for disabled people, not "families touched by disability", to get services.

I'm not holding my breath on that one. I can't get most of you to understand that we grow up.

(A moment here for a shoutout for those of you who sincerely told me that we're all someone's child with autism  & our parents always fight for us. And by shoutout I mean 'fuck you'. My parents never fought for me. They fought with me. Physically. To injury. So fuck you again!)

Then there's how you take the responsibility of modeling how people should interact with your child when they are an adult. People who aren't autistic and don't have autistic family members (and can't conceive of having autistic friends) are looking at you, yes you, for how to treat your child when they grow up.

They're looking at how you treat us, adults who are currently autistic.

Think real hard about how you treat autistic adults. Really hard. I've gotten death threats from parents. This isn't uncommon. Many of us get missives telling us explicitly to kill ourselves, again from parents. When we tell you about this, you go on to lecture us about 'judging you' (I'm getting back to this in a few paragraphs) and ignore that your cohort, yes yours, they are in fact your responsibility, treat us this way.

Y'all can claim to love your kid all day long but if this is how you want them to be treated, I question that claim. If this is not how you want them to be treated, why the blazing fuck do you treat us that way?

Out of one corner of the mouth "How dare you distrust me because of what your parents are like" and out of the other "here, let's see if I can break you in ways your parents didn't get to before you left". That's y'all.

Precious few neurotypical people are going to be there for your kid because not only did you center yourself in services, but also you demonstrated that you want Real People (TM) to treat your child like utter shit. "Do as I say not as I do" isn't a solid teaching strategy and you don't even  bother to pretend you don't want us constantly abused by you and yours.

Then there's us. Autistic people. Autistic people provide most of the day to day support for other Autistic people, since as already discussed no one else does it. Services are for parents, and our parents make it very clear that we can be scraped off the bottom of your shoe and discarded.

We try to talk to you. You see, we're largely pretty fucked up. We don't have to be fucked up. But we are, between the compliance training and the bullying and the decades of misunderstanding. We want better for your children, & we see you making the same errors. Maybe you aren't making an error on purpose?


Ok maybe you are making that error on purpose. See, that's a very you-centered perspective to take. (I have another post percolating on judging, since the high horse of nonjudgement has led to y'all being complacent in multiple murders, but since autism is all about you it's clear that isn't your priority).

We try to help you. We try and try. You send us missives encouraging us to kill ourselves. You threaten me in truly creative ways. Imagine if you spent half that creative energy on figuring out how to not treat people like shit! But I digress.

We try and try, but we are not impervious to your abuse. We want nothing to do with you. Our circles don't overlap. You scare off, beat off, torment off every autistic person and autistic friendly person in your orbit, until when you die your child is surrounded by people who hate them.

You're right! No one will be there for your child! You've isolated them from their subculture, you've taught every neurotypical to treat them like shit because that's what autistic adults are for, and you've made sure all services are accessible only by you, not by your child.

So you're not wrong in the words but you are wrong in every thing that matters. Only you can fix this, you've made very certain no one gives a shit what autistic adults say.

But that would involve decentering yourself, & you'd probably rather whine about your child's future than actually allow them to have one.

Saturday, August 12, 2017

Where's your compassion for us?

Folks, do not do this:

If an autistic adult, in autistic space, says that something happened that was painful, don't diminish that. To take an example completely at random, say that I, on a friends only facebook post, from an airplane, say "I recognize children have a right to fly but the one behind me is kicking and screaming RIP me", there is literally no need to say "but what if that child has autism?"

What about what if that child has autism? Does that mean I no longer have Ehlers-Danlos and my back won't be fucked up for days? Does that mean I am no longer sound sensitive? Does that mean lack of sleep no longer triggers seizures? Because autistic children exist?

Every autistic adult you encounter knows damn well that autistic children exist. We are, generally, in the habit of compassion for children having a hard time in public.

The thing is though? "That kid causing you pain may have theoretically been neurodivergent so shut your hole about the very definite, documented pain and harm done to you"? That's not serving anyone. You're saying that only autistic toddlers have needs. You're fucking over your own children, if you're a parent (it is usually parents who decide to cape for Schrodinger's Autistic). They won't be toddlers forever.

We generally do have compassion for kids who are having a hard time. The thing is, you have none for us. If we cover our ears you all throw an utter fit. How dare we? We are not allowed to be in pain. If we melted down the way that the pain Precious BeighBee is putting us in makes likely? We'd get shot. That is a way for us to die, being autistic in public. But you can't muster an ounce of compassion for us, can you? Because how dare we remind you that autistic adults exist.

Our pain is real. Our pain matters. Acknowledging it isn't going to hurt you or anyone else. Promoting this idea that only toddlers are autistic, and no one else has access needs or sensory pain or anything else? That is bigoted and it is unacceptable. Your children are going to suffer for it.

But hey that child whose parents brought no toys on the plane, and who was using language patterns autistic toddlers tend to not use? You sure defended him against attacks that weren't even happening.

Your contempt for autistic adults is showing. Might wanna see to that.