Sunday, February 18, 2018

To the youth I know--you matter. I'm so sorry.

This is one of those posts I highly doubt the people I have in mind as I write will ever see it, or will know is for them. But it's not just the youth I know who fit these words. They're just who I am mentally looking at & speaking to, because Having Feelings at them would be awkward & weird & they have enough to worry about without realizing that I'm a big ball of squishy feelings. 

Dear young people I have the privilege of knowing & working with & seeing grow into who you are going to be,

I am so sorry. We failed you. We meaning the adults. Again and again we failed you. No, #notalladults, but yes, enough adults. You're putting up with a veritable avalanche of bullshit and it's not fair. And it's our responsibility. I'm so sorry that you're going to be the ones stuck with the fallout.

I'm so sorry that your generation has targets on its backs, in the places that should be safe, because our lawmakers care more about guns than about you. I know the kind of people you are, and the kind of people you want to be. I fear for you every day. Every time I see reports of another mass shooting I am afraid that we're going to be holding a vigil for you, because you're brave kids and you're selfless kids (I lucked out, getting to know you. You're way further along the road to decency than the kids I went to school with were). I know that every week, someone is having to hold a funeral for someone very like you. And I can't even imagine your terror every day.

I couldn't even get on the MAX for several months after the white supremacist murder. You have to go to school every day. You can't avoid it. I cannot imagine how scary that is, every day. And you're still brave. Every one of you who I know & spend substantial time with is.

I'm so sorry that you grew up being called entitled and lazy. My generation got that too & it sucked. And your generation is being left in an even bigger sociological mess than mine was--that's saying something. Millennials (that's me, not you. You're Generation Z or Generation Screwed Over or Generation Why Aren't You More Nilhistic or something) are the first generation to have a lower life expectancy than our parents. You may be right there with us. That sucks. You deserve better.

I'm sorry that the news is always, always bad. That you're seeing a rise of fascism. That you're watching while adults, who are supposed to care for you & show you the way, destroy the planet. That kids you've known from childhood are being sent to countries they don't remember, all because adults are letting their bigotries rule.

I know your whole generation isn't perfect, but gods what I've seen of you makes me feel both hope and shame. We don't deserve the representatives I know. You're forces for good. I hope you keep being forces for good, although it's hard, especially as good gets dangerous.

I'm so sorry. You're worth more. We should have fought harder for you. We owe it to you. Please, hold on to who you are. Who you are is beautiful. Don't succumb to the bigotry. Learn from our mistakes. My generation & the ones before chose to not. Be better than us. You have an abundance of information at your fingertips. Please. Learn from it.

I'm proud of each of you. I am proud to know you, to get to watch you grow into adults. I wish you didn't have such a mess to come of age in. I plan to help clean it up. You deserve that & so much more.

Love & strength,
K

Saturday, February 10, 2018

Awareness (TM) has bad effects on typical kids too

I've spilled much digital ink, as have my peers, about how Awareness (TM) actually hurts autistic people, how we need acceptance not awareness, and all the things that go along with that. People don't really want to hear that. It's like how it effects us doesn't matter or something.

Okay. Fine. So let me tell you who else it hurts: young typically developing children. No, really. And their families too.

Here's the thing: autism awareness seeks to make everyone afraid of autism. It can strike at any time! Eat your baby! It lurks! Seeking to destroy you! (because that's totally how a neurology works right?). Awareness charities want everyone to be on high alert for autism and they want you to be scared of autism.

Well boy howdy have they succeeded. Everyone is afraid of autism. Great. Wonderful. Well done. And everyone thinks they can spot an autistic person.

But they can't. So you have all these families hypervigilantly watching their toddlers for signs of autism so they can intervene, because Awareness Inc told them they can intervene and turn an autistic child into a typical child.

Things Awareness Inc has them worried about? Turns out most aspects of autism, particularly in young children, are in no way limited to or mostly found in autistic kids!

Your two year old isn't talking in sentences? That is in fact normal. Your toddler screams, cries, and generally has no emotional regulation? Well yeah, they're very very young. That's normal too. A three year old who hates change and doesn't like to share? That's not out of the ordinary either. A whole lot of traits and behaviors that the Awareness (TM) lobby has you afraid of are just part of being tiny children.

Autism isn't the reason a five year old won't go to an art gallery quietly. Being five is. No five year old is going to enjoy that, okay? Most preschoolers are not able to deal with fancy pants restaurants. They just aren't. It's okay. They're little!

People are really under educated about child development and psychology in general. Over and over, parents and other adults make developmentally inappropriate demands on children, regardless of the kids' neurologies. Adults just, on the whole, are very bad at knowing what is and isn't typical for a child of a given age--what it is reasonable to expect of an average child of any given age group. People ascribe motivations that are far beyond little babies all the time (a 6 month old is developmentally unable to do something to spite you. Ever. They just are). They think kids have more executive functioning capacity than they do, more emotional regulation capacity than they do, and better ability to access their words in times of stress than they do. And this is when we're talking about neurotypical children!

Then you add the urgency of Awareness (TM) on top of this. Now you have every adult who sees a kid having a hard time hypothesizing that the kid is either spoiled or autistic. That's a snap judgement on very little information and mighty hasty. Little kids of all neurologies have loud failures to deal. Kids do in fact have to learn to talk, and they do it later and slower than people seem to think.

Not everything that baffles or inconveniences adults is either spite or a developmental disability. Sometimes it's developmentally right on time. Panicking that everything is a sign of autism isn't helping these families. It isn't helping typical kids whose parents panic and decide they must have autism--even if they avoid harmful interventions and quack treatments, that's still a lot of stress and a lot of microscope-examining (which is more stress) all around.

Breathe. Calm down. Not everything autistic people do is something just autistic people do. You don't need to be Mad Eye Moody with his constant vigilance. It'll all be ok. Give your kids time to breathe, to develop, to learn how to do things like regulate their emotions and use their words. They need more time than you think they do.

We need more awareness of how children develop in general, less panicking about neurodivergences in specific. Awareness(TM) without that background provides a lot of unnecessary worry and that's bad for everyone.

Friday, January 26, 2018

To those I went to middle school with

Dear (heh) class of 1997 at a certain Catholic 4-8 school in central Illinois,

This letter has been a long time coming. See, I have so many words to say to you and most of them are profanities. You're not worth the eloquence I use for most things, though, so here we go.

We are old enough to have children in school. We are old enough to have children at that school. And that is horrifying. Not a single one of you should be allowed near children, ever. I know that statistically, many of you have your own kids or may work with kids. This is horrifying. There's no way who you are at 14 grew up into a decent enough person for that job--I knew most of you at 18, you were just as insufferable. You were bad people. Every one of you.

"We weren't bad. We were just kids". Guess what? I was too! And because, unlike you, I've never been a perverse waste of carbon who takes joy in torturing other people, I work with kids. I know kids. I know kids the ages we were. They'd have thrown down. I'm not just talking about one of my kids I know, either. I have known multiple young people who'd have taken on bigger and badder folks than yourselves, in a larger number, because they can find "wrong" with two hands and a map. Youth isn't an excuse. Youth isn't a reason. You were cowards and you are bad people.

Let me tell you something you should have known, given that supposedly we were all super smart and learning good solid morals or whatever: you were torturing, intentionally, a child who was being abused at home. So great job. A+. But you had to make sure, since you weren't the richest kid at school anymore, that you maintained your status. Oh, and while I have grown into a person who doesn't give a shit about test scores because they don't determine who you are as a human being, let it be known: 2 people in our whole grade got in on the merits of our tests rather than on the merits of our parents' wallets. I am one of them. That doesn't matter though; I'm a better person than you because I don't torture people who are being abused at home for funsies.


I'm sure at least one of you would wring your hands and cry "but we didn't know" when you find out I'm autistic. Thing is, you shouldn't have to know. The way you treated me for five years, five hellish years, is unacceptable no matter what. If you had known it wouldn't have changed anything. Don't lie. You were bad people. The core of your being is cruel, cowardly pieces of shit. That's just facts.

You were sure pleased with yourselves, huh? I bet. Are you pleased to have contributed to a rip-roaring case of Complex PTSD? Are you? Did you say "gosh I hope I star in someone's nightmares for the rest of their lives?" Oh wait. I know the answer to that question, since you told me to kill myself, daily. You wanted me to not have any more nightmares. Because you are cruel wastes of skin, every one of you.

I sure hope none of you lies to your children and tells them that you care about bullying. You don't. You may care when it's your kid, because they are an extension of you (people as self centered and awful as you don't change that much--patterns exist, sorry I see them), but you don't actually care. You probably relate to the bully more than to your own child. Unless of course your child is neurodivergent, in which case do them a favor and call social services on yourself. You shouldn't be trusted with a dog, much less a neurodivergent child.

The sad thing is? You all had every opportunity to not be literal human garbage. You had money. You wanted for nothing. Most of you had at least one significant talent. Your families may not have been perfect but they weren't horror shows. You could have chosen to not be like you were.

But you didn't. All these choices were available to you, and you chose instead to be the worst of humanity. And you'll never experience any consequences for it, because all those options were available to you. Funny that.

May who you were haunt your dreams. That's still who you are. May you live every day knowing that you deserve nothing good or warm in your life, and that's because you chose to be vile. It's your choices who tell who you are, more than your abilities, and of all the routes open to you, you made a conscious effort to be scum.

I may have nightmares about you still, but at least I'm not a coward. At least I can look at myself in the mirror and say "I never tortured a person for fun". Sure, you literally fucked up my ability to meet goals, but that's on you. I'm worth 1000 of you.

You fucking scum.

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?
No?
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 connection....my 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.

Regards,
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.

Regards,
K

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.

Regards,

Neurodivergent K.