Wednesday, July 12, 2017

Parents wore out my good faith. You brought it on yourselves.

People always concern troll me, assuming that I'm thinking the worst of parents and thus holding them at a distance, being curt, charging them for my time, refusing to engage at all, engaging in a tone they don't like.

You know what? You're mostly right.

Do you know why?

It's because of what happens every time I try to engage with you people in good faith. When I try to be "nice" instead of just laying it all out there for you in words that come naturally to me. When I try to coddle your feelings a bit.

It's never enough for you. Ever. You don't want our help. You want your ass kissed. Let me tell you some stories. Recent ones. We're not talking when I was a pigtailed teenager. We're talking things that have happened in my thirties.

Scenario one:

We're talking about the Disability Day of Mourning. Allistic mommy is upset that it's not in April "for Awareness". Allistic mommy also opines that maybe those parents are autistic and that's why they killed their kids.

That's a horrible thing to say. It's also false.

I mention that I met one of those moms, long ago before she became a fucking murderer, and also I've met the surviving dads of 2 kids killed. The only autistics in the matter were the non murdering parents. In all cases in my small data set, the murdering parent was allistic.

She decided to declare that I said that all allistic parents kill their children. I said NO such thing but she wanted to yell at me and misrepresent me and verbally abuse me, so I said what she wanted me to have said to justify that.

This woman holds a high position in a state autism society.

She has yet to apologize.

I engaged in good faith; she did not.

Or let's talk about today.

I gave a parent the benefit of the doubt. She was talking like no one in the conversation had any difficulties beyond being vaguely autistic. This is not true.

I told her to stop assuming she knew anything about people on the internet beyond that they can type and have internet access.

She continued to do this, after a vaguely but not really productive bit of conversation. So, because I was trying this "good faith" thing, I said that I knew she didn't mean to come off like she's not going to listen to us because we aren't Like HerChild(TM) but that she is and that's a dangerous assumption in addition to being off putting.

Holy hell. You'd think I asked her something really egregious, like to exfoliate her heels one cell at a time. No. I did not. I engaged in good faith and told her what she was conveying that she didn't mean to convey, just for her reference, and that her assumptions were wrong.

Holy. Hell.

She started with "you don't know me". No shit I don't but I know patterns. I thought you were trying to avoid this one.

She was not.

So now she's threatening to abuse her child and blog about it to spite us, she's laughing at causing people seizures and flashbacks, she's trying to gaslight multiple people, she's claiming sarcasm when she's called out on saying straight up abusive things, she came down with schrodingers autism and schrodinger's epilepsy.

And while this one is doing more, to this second, and pushing more immediately, this is what happens every fucking time.

Every. Time.

Yes, I do know you. The second you get all puffy and say that to me, I know exactly how this is going to go. Every time I engage anything like on your terms, this is how it goes.

You try to hurt me. You hurt my friends. You threaten your kid because I didn't kiss your ass enough for your taste.

Every. Time.

You won't pay for my time but you want your ass kissed, you want to be told that nothing you're doing is wrong, nothing you do could be wrong, you want to be told your special, and you want NT word patterns.

And you don't get that? You respond with psychological violence. Every time. You're so transparent about thinking we're subhuman. We aren't people to you, we're resources to use and abuse as you see fit. You're not special; the vast majority of you are like this.

So parents? You want my goodwill back? Fucking act like it. 

NB: complaining #notallparents in my comments isn't acting like it. It's a step away from "I'm going to abuse my kid because I don't like you". So don't fucking do it.

Saturday, June 24, 2017

FAQ: PFL Edition

Inspired by parents, professionals, and other abled people who think that they have a right to tell us how to refer to ourselves and then get snotty when told that's inappropriate.

Q: May I humbly request you change to using person first language?

 A. No.

Q. I demand that you use person first language.

A. No. What happened to humbly requesting? 

Q. Let me tell you all about it! You must be unaware!

A. You may not. I am quite aware.

Q. But it puts the person first! It's more respectful!

A. It is not. I actively selected identity first language. Telling me how to talk about myself is disrespectful.


Q. But I need it to remind myself that my child is a person.

A. Woah there. "I can't think of my kid as a person" is really very much your problem. Why would you think that would win me over? It makes me very worried for your child.

Q. Person first language is correct.

A. No, it is not. Stop trying to tell me what to do.


Q. There is no need to be so rude!

A. Okay so you come into my space and demand I talk about myself in the way you want because otherwise you cannot remember I am a person and that isn't rude?!?


Q. I'm trying to help you by pretending I think you're a person. This is why you don't have allies! 

A. You acknowledge not thinking I'm a person and come into my space to tell me how to talk about myself. You're no ally.


Q. How will I learn anything if you don't use person first language?

 A. If you need to be reminded every other word that I'm a person, you're not quite up to the level of this blog. This is not a Disability Rights for Beginners blog.

Q. You're so rude!

A. But telling me how to talk about myself is not rude. Ohkay.


Q. You have poor social skills because you have autism.

A. I am not the one struggling with social skills here in this situation. You should be embarrassed at your behavior. I'm getting second hand embarrassment for you.

Q. So you'll be changing to person first language?

A. Piss off and don't piss back on again.

Thursday, June 1, 2017

Dear PSU, it IS partly your fault: an open letter

Dear Mr Wiewel and the entire PSU board,

I am sitting at home by my computer instead of attending class today, in light of the terror attack on the MAX on Friday. Sure, possibly Micah Fletcher is attending class, but I suspect he is braver than me, better than me, less likely to die from relatively mild injuries than me, and less likely to be targeted than me. So don't try to use another student against me. That's disrespectful to him.

This letter is about you and the choices you have made, or failed to make, that are why attending class is currently not a thing I feel safe doing.

It's funny, the emails you send the school, Wim. Out of one side of your mouth, you're declaring Portland State a sanctuary campus. Out of the other? You're saying we can't prevent Nazis from using our campus as a platform. They're entitled to air their views, you say.

We've all heard their views, Wim. Their views are that a large proportion of the campus population doesn't deserve to live, much less be on campus. I'm certainly not supposed to be, between my gender and my disabilities and my race. Nor are many other students, those you allege to want on campus. But not enough to stand for them.

Remember back before the election, Wim? Remember the students parading about shouting anti-Latinx slurs, anti Black slurs (you've never pretended to care about ableist slurs so I'm not getting into that, we call that Tuesday at PSU, but that's another letter), pretending to build a wall? They were harassing students. They were making students feel unsafe. But "they have a right to free speech".

People have had knives and guns pulled on them on campus, Wim. By the same folks who were parading about. From folks who video and doxx people who attend PSUSU and other progressive groups' events. This is not free speech, Wim, this is threats. This is inciting violence, though one could argue it is already violence. We have a right to privacy. We have a right to not be harassed for our very existence.

But you, members of the board, who refuse to have an open meeting where students can hear and see what's happening, you support these men in harrassing students. You won't stop them, you see, not even from threatening folks with weapons, because "freedom of speech". Freedom to brandish weapons on campus isn't in the first amendment, bro, but apparently you missed that.

And now, Wim, people are dead. People are dead because this city has a Nazi problem that you allow to breed on campus. You won't find a marginalized student who hasn't been made to feel unsafe by Nazi symbology, slurs, posturing, or transparent threats, but you have to support the freedom of speech of the poor oppressed white men quoting Hitler.

Now people are dead. The man who killed two and seriously injured a third was targeting teens of color, Wim. Three men stepped in, but what if they didn't? They'd still be alive. The girls would likely be dead.

Do you know what the man said? He said he stabbed the men because criticizing him, telling him to stop, violated his freedom of speech. He said killing people for telling him "you won't do that here" was patriotism. He said killing them was his right because he wasn't allowed to spew whatever venom he wanted unchallenged.

Does that feel uncomfortably like what you've been saying in your emails? It should, Wim. Because you're coddling men like the terrorist, you're saying that it's their right on campus to spew whatever hate they want, to back it up however they want. You're not drawing a line, Wim.

You're going to have to take a stand. The powers that be at PSU are going to need to choose: is this Nazi territory, or is it going to be on the right side of history? Right now you chose the former, and now people are dead. You currently support an environment of white supremacist recruitment and action.

Pick a side, Wim. And be honest about it. I can't be the only person afraid to go to school. If you want me and people more marginalized than me on campus, show us. Take a stand.

K A
class of 2018

Tuesday, May 30, 2017

Dear Destinee, it's not your fault. An open letter after the Portland racist attacks

Context: this post is written after a white supremacist went after two teenage girls on public transit, for being people of color in public. Three men stood up and defended them; he murdered two of them. The girl who, at this point in time, has talked to the media, was blaming herself. It wasn't her fault.

Dear Destinee, and your friend,

I'm so sorry that you both were targeted the way you were. I know it's probably not the first racist venom you have heard, and I'm sorry to say it's unlikely to be the last. This city has a big racism problem, as much as they try to deny it. You have never deserved to be the target of that vitriol. You will never deserve to be the target of that vitriol.

The experience must have been harrowing. I cannot imagine sitting in your shoes that day, or the feelings you are having now.

I saw on the news you blaming yourself, saying these men are dead because of you.

That is not true. Please believe me, that is not true.

A cowardly man singled you and your friend out because, as teenage girls, you're an easy target. You weren't with someone who he didn't want to fight. He reckoned everyone on that train was as cowardly as him and would just let him harass and attack you.

He reckoned wrong. Other people, of their own free will, knowing it was risky, said "you may not target these young women. We will not allow it." Everyone who has ever considered intervening knows it's risky. Part of why people so often keep their heads down is because standing up is scary.

Those men did the right thing for you, Destinee. They chose to put themselves in harm's way. Based on everything I have read about them, they'd do it again. Every person interviewed has been saddened and not surprised at all, because they were men of principle and justice.

It's not your fault. It's not. You bear no blame in this situation. You have every right to ride the MAX. To go from place to place in safety. You did nothing wrong. It's not your fault.

You're innocent, both of you. I'm glad you're alive, that you made it to safety. I hope you are healing.

Please believe me, it's not your fault. It's his.

Love,
K

Thursday, May 4, 2017

I wrote to my Senator. #corpsesdontvote

This is what I emailed my senator earlier today, because only the senate can keep the ACA. CN for medical disasters, fairly graphic descriptions.
You get the cranky version of this because your staff won't even promise the most basic of ADA accommodations. Ironic given that I'm writing to you about health care and one of the conditions that requires said accommodations.
 
Like many Americans, I have chronic health conditions. Like many Americans, I need you and the whole democratic party to grow a spine and stand for me. I vote democrat because the other choices are unconscionable, but I am thoroughly unimpressed with the pattern of roll over and play dead. I need you to not be a doormat.

Here's some incentive: how I am going to die if the senate doesn't kill the republican death to poors bill.

My first chronic, life threatening medical condition is adrenal insufficiency. I do not make cortisol. Without cortisol, people's bodies cannot respond to the stresses of every day life. I take a daily corticosteroid pill and must inject myself with extra steroids if I am sick or injured. Without cortisol, the body cannot restore normal functions in times of stress. Have you taken a first aid class, Senator? Recall what you were told about shock. The heart doesn't pump effectively. Blood pressure crashes. Blood sugar crashes. Death can result. I am going to die from going into shock from a stubbed toe if you folks don't find some courage. It's scary. When your heart won't move blood, everything is /scary/. It's not a good death.

The other option, of course, is for me to die of epilepsy related complications. Because of a lack of health care in my youth, my epilepsy got pretty hard to treat--the more seizures you have, the more likely you are to have more seizures. They are harder to treat the longer they are allowed to go on--this is called kindling. As a result, my mostly-effective seizure meds are about $1000/month (if we lived in a real country with universal health care they'd have been stopped much sooner, but we don't. We live in the land of "the poor and disabled should die horribly". Your part in maintaining that status quo is very much noted).
I have 2 options for how to die if epilepsy related causes take me. The first is SUDEP, sudden unexpected death in epilepsy. The way to prevent SUDEP is to control seizures. SUDEP is probably not painful, but it's traumatic to the people who find the body, and it's a dead person who won't vote for you. Dead people don't vote. It's a lot of grieving people, all because the D doesn't stand for democrat, but doormat.

The other option is status epilepticus. You aren't going to like reading this. Since it's my fate, not yours, I don't actually care. Be brave. It'll be good practice for that spine growing thing.

Status epilepticus is a seizure that does not stop.The most commonly noticed status epilepticus is tonic clonic status, although partial complex and absense status also exist (and lead to all sorts of problems like subtle brain damage and getting hit by a goddamn car because you're only 25% aware of the world around you). This is not good.

Your body is not made for every muscle to be contracting at once for an extended period of time. Neither is mine. The muscles start to break down. This floods the body with waste. The brain fries itself. Like, literally. It cannot deal with the fallout of the electrical activity. It is not made for that. You can seize yourself into a persistent vegetative state. If you are me, your seizures will dislocate joints. Remember that adrenal insufficiency thing earlier? That is the sort of injury that leads to adrenal crisis, as is everything else about status epilepticus. Your heart gives out. Your kidneys can't cope. Your brain stops being able to not seize.

This is an awful way to die.

If you do not stand up to Republicans, you are choosing for me to die this way. And my loved ones will not forget it.

With health care, I am an involved member of my community. I participate in martial arts and assist children in accessing the activity as well (including children who, like me, need health care to be able to interact meaningfully with all that life has to offer). I am finishing a biology degree--I was going to be an ecologist until the republicans decided to destroy ecology, and no one stood up and said "nah bro you can't do that". I teach and judge gymnastics. Kids and cats love me. It's mutual.

Without health care I'm a corpse. And my blood will be on your hands.

Saturday, April 22, 2017

Anti-med sentiment almost killed me.

Before I start, DO remember that I believe solidly in cognitive liberty. Your brain, your choice. However, the pushing of inaccuracies and terrifying, largely inaccurate rhetoric, pushing of worst case scenarios as common and inevitable, stigma, and lumping in all sorts of things together all led to some very bad places. I support whatever you choose to do to your brain--what people discouraged me from doing with mine is the problem I am talking about here.

CN: medical neglect, discussion of stigmas, DARE, abusive parenting practices.

I was diagnosed with epilepsy when I was pretty young, 2nd grade maybe? My seizures weren't dramatically seizurelike. They were not common. I didn't know I had epilepsy. I didn't know I was taking anticonvulsants until years later, because lying to me was a hobby of my mom's I swear.

And then I took DARE at school, like we all did. And I became concerned about my mother's smoking and her drinking--which, to be fair, were at concerning levels (not feeding your kids because you need cigarettes? That's a problem. I'm ok standing in judgement on that, as the child who went to private school while simultaneously living on a starvation diet). Internalizing "drugs are bad" wasn't hard because in my life, the ones I knew about very much were. Mom fell off the toilet that she fell asleep on because she was drunk, don't wake her up unless you want to get hit. We're down to frozen pot pies because buying cigarettes was more important.

Rather than adding nuance to the discussion, my mom decided the appropriate response was to yank me off the AED I'd been taking. At this time in my life, my seizures were, again, not very dramatic, but the pronounced interictal moodswings were starting to assert themselves. So life became meltdown city, because I was having more seizures, and that's just the direction my brain was taking things at that time--hyperreactivity in all ways. It got worse after my stepdad smashed my head into a doorframe rather than not stand in said doorframe, consistent with a blow to the seizure focus.

When I was in high school the doctor did ask if I was losing time (yes) or having deja vu (also yes) but my mom told me that if I said yes he'd think I had a brain tumor. So that became a moment of lying because my mom told me to, and thus not getting back on meds. She made me scared to tell the truth.

Several years later, mommy dearest made sure I got a diagnosis of ADHD (which is fair. I have ADHD like woah). Stories of problems on stimulants abound...and I had Big Problems on Adderall. I stopped it shortly after--off anticonvulsants, and with my one known to me experience of neuroactive medications being pretty bad.

I rediscovered autism not much after that. And guess what is all over a number of autistic run pages? Anti med sentiment, that's what. And I do totally sympathize with the experiences that people had, I do. People were inappropriately medicated. They were overmedicated. They were coerced or even forced. And that is wrong and should not happen. I am strongly against that.

But the narratives and the organizations linked? So many were written not as "this happened to a person" or "this is rare but it can happen" or even "so this is a thing", but as inevitabilities. It was presented as a given that all neuroactive medications are poison and will damage your brain and probably reduce your lifespan and just generally fuck everything up.

Shortly after this, my discovery of the autistic community, and by extension the Mad Pride community, I started dating a person I went to school with. His parents were AAers. A drug is a drug is a drug, it's all poison and addictions, literally anything is better than taking a drug, et cetera. We were still together when I tried to do something about the seizures (although what I initially tried to get help for was the interictal mood swings, since they were what I could describe--I was a legal adult and still had not been made aware of a history, and a present, of epilepsy).

It took me three years after all this to even consider medication, because it was all poison, because it would shrink my brain and kill me, because life threatening side effects were inevitable and I should be proud of and roll with the interictal mood swings, that's basically a mood disorder, right? Three years of kindling. Three years of more common seizures, that recall I still wasn't aware were seizures because everyone was perseverating on the mood stuff (myself included), three years of just letting the seizure pathways get more and more ingrained.

And then I started having clusters of seizures that even laypeople noticed. They crossed the threshold from simple partial to complex partial, and thus unresponsive, and forgetting. They crossed the threshold from one at a time to clusters. They crossed over into where people would notice. The seizure became the problem, not the aftereffects.

But all medication is poison, right? Groups linked to by people I highly admire were full of that. Bad experiences were inevitable. Life destroying experiences were inevitable. That was the message, over and over and over. If it effects your brain, it'll fuck you up forever, regardless of why you take it.

By the time I got on antiepileptic medications, I was 21 years old, and terrified. My one experience with neuroactive medication, Adderall, was awful and scary and bad. I couldn't deal with that again. And the first med didn't work. The second did, but ate my blood (which is rare, not at all common). The third didn't work. Or the fourth. The fifth gave me a death rash. On and on.

And every time I said I was on Topamax, or Trileptal, or Keppra + Topamax, or whatever..."that's a lot of medication, are you sure you need that?". Autistic circles. Other neurodivergent circles. Everywhere. Rescue benzodiazepines? Yes I know those are addictive thanks.

I have intractable epilepsy. I have an incredibly high risk of SUDEP. My breathing has stopped many times. My heart has stopped at least once. All from seizure activity. I'm prone to partial status epilepticus, which can cross over into generalized status epilepticus.

There's all sorts of weird factors that go into intractability, but part of it is: how long did the seizure connections have to get established before trying to stop the seizures? And mine had a long time. A long, long time. And yet still people tell me that my medication is poison. I didn't ask them. When I want their opinion I will ask for it.

The lack of nuance, the a drug is a drug is a drug? I almost died from that (well, I did, but it didn't stick). I will be on a medgoround for the rest of my life because of choices informed by that narrative. By all means, talk about your experiences with things, but don't present them as universal. And don't present it as a moral argument (did you know? I'm weak because I can't outstubborn epilepsy. I've heard this from multiple sources). Just don't do that.

This narrative shoved down my throat, with the goal of keeping me from getting medical help for my life threatening neurological condition? It's every bit as much coercion as pushing medication is. And it's coercion that almost killed me. I don't actually give a fuck if people meant well or not, because they were letting their agenda and their feelings about how pills are bad overshadow the very real fact that people die of untreated epilepsy. It wasn't brave to tell me that I could try supplements and yoga. It was horrendously dangerous.

Do what you want with your body, but don't tell other people that their attempts to live a better life, or to live at all, are poisoning them. I have to live with the fallout from that, and am lucky I lived through it. Learn. Do better.

Thursday, March 30, 2017

I am or was a dancer, and that's okay except the parts that weren't (autistic athlete series)

I was exposed to dance earliest of all my attempted athletic endeavors. I've been in and out of dance for years.This would not be the case, however, if I had not done gymnastics. We're gunna just throw that right out there.

Not because I don't like dancing, but because dancers are really hit or miss, as are dance environments, teachers, and organizers. I keep going back to it, so obviously I enjoy it, but there are situations I cannot and will not put up with.

My first experience with dance was a parent/child tap class when I was about 4 or 5. This was an alarmingly bad choice, as anyone who has known me for more than 10 minutes knows. I expressed a desire to try ballet at this time, but my mom wanted to take tap so tap we took. If it hadn't been such a small class (3 kids, 3 parents) I'd not have been able to deal, and I did make a habit of hiding my tap shoes. I don't remember the teacher at all but tap is the one kind of dance I unreservedly will never try again.

My next dance experience was...country line dancing of all things. My mom and stepdad met country dancing. As a family, we all went country dancing--their favorite teachers opened a club that was all ages, so we could go any night.  I know it is dorky and uncool and I do not give a single fuck that it is dorky and uncool, because it was also really fun. The moves are simple, and you do the same 64 counts or less over and over and over. And the number of moves is fairly limited, so they're just remixed. AND generally one song is played for the same dance and only that dance (although if the floor isn't too crowded you can get 2 groups doing 2 different ones, and you may have a couple's dance going around the edges) so there's always a right thing to do. I'm pretty sure line dancing is the way I learned to position my body in relation to other people's bodies, just as gymnastics is how I learned to master my body.

Given where I grew up, country line dancing also offered me an in to a social activity. That all ages country club? Was a hot thing to do in my hometown, because it was something that could be done without parents. I'm from the midwest, ok? So when I had friends, I also had a place to hang out with them on Saturday nights. And I had enough mastery that I wasn't their dorky awkward friend tagging along, I was one of the people who knew a bunch of the dances and could figure out by following along many of the others. As much as people bag on country line dancing, it was a net positive for me. I made a friend there. I hung out with friends there, like a Real Kid. I learned to space my body in relation to a whole lot of others, and I developed a rudimentary sense of rhythm. These are all useful things.

In high school the Y I competed for also decided it needed a competitive dance program. One of my friends was a dancer and was transferring from her old studio for other reasons, a couple girls who took tumbling classes also danced for the Y, and I was encouraged by my coaches and my friend to join them in a class. I can do a backflip, I can do full splits, I can be taught to dance, seemed to be the rationale here. As my dance teachers also coached me, their assessment in this matter could be trusted.

And, it turns out, I could be taught to dance. We did 2 jazz numbers (one technically in the novelty category, since it had tricks) for competition and a lyrical one as well for the recital. Our costumes were pretty simple to keep prices within reach of our participants, which also meant they were not a sensory nightmare. I actually wore the top of our lyrical costume as streetwear until it fell apart. My teachers were skilled in the art of showing off all the dancers to our best advantage, and in positive motivation. We never won anything I don't think, I still don't understand dance competition scoring, but we had fun (and I got to make a teacher who I tumbled with for about 6 months really mad by doing a skill she didn't think I'd ever do, but that was just a bonus). The makeup involved was a sensory problem (fortunately I have strong enough coloring that I could make due without lipstick on stage, mostly) and the leaving at 5 AM for competition was not any more fun for dance than it was for gymnastics, but it happened.We also learned that I have too much hair for a gymnastics coach to put into one French braid but that's neither good nor bad, it just is.

These experiences--dance at the Y and line dancing--are what compelled me to take ballet in college. This was a much more mixed bag. I took two semesters, took time off, took some open classes at a studio much later, and half a term a couple years ago. The format of barre, at least, is almost accessible. You do the same families of movement in the same order every time. The choreography for each segment of barre rearranges itself, but it's always plies then tendus then jetes etc etc.

The problems are...I do not learn choreography by having words said at me. I gotta see it at least once. I can learn it by seeing. This was an even bigger problem in open floor settings because the possibility for crashing into others is significant. So I was always behind on learning the exercises. In some classes this is fine. In some it's not.

There's also elements of dream student/nightmare student that happened in ballet. I'm very flexible. This is a constant. Ballet teachers love this. Except my turnout is really, really bad. Like horrible. And teachers, to a greater or lesser extent, treated this like a won't rather than a can't. I really can't get my hips to turn out more than 90 degrees (perfect turnout is 180). I also had a really hard time finding my arms until I danced in wrist weights for a month, which exasperated my first teacher. My last teacher though is the reason I'm probably done with ballet. Not only am I flexible, I am muscular. I am descended from people who, like, live their lives on horses. Who get on and off at speed. My musculature reflects that--it's quick and it is bulky.

No one gets to tell me I jump good for a big girl. I jump good for anyone and it's a really twisted world in which someone is telling me that my body is too big. No one's body is too big.

Between the body snark and my knees always hurting from trying to maximize my turnout, and the taking my inability to learn choreography without actually seeing it personally, I was done. That's not ok. This is a community college ballet class here. I don't need that shit in my life, so I walked out & dropped the class.

Not to say ballet was completely negative, although it was ultimately an environment I will not deal with. One of the projects I was part of was setting up a dance class for autistic children who couldn't, or couldn't yet, access the class settings available. We had three students and three assistants, and only one wasn't autistic. They all learned things, performed in the recital, and two of them transitioned to integrated dance classes (and in one case, theater as well) in our pilot year. The program is fully funded in perpetuity. Although I've grown in my ideas about "for autism" dance classes and such, I was really proud to be part of it. That was the least restrictive environment, at that time, for our students. If I had not done ballet, I'd not have gotten to be involved in that (and they'd probably have done it in a more neurotypical-focused way).

Other dance bugs bit me too. Enter: swing dance.

I've written a lot on this blog about swing dance, since swing dance is where I figured out that I love dancing and hate dancers.

With so much background in finding my body, and with figuring out how my body is in space relative to others, swing dance was a natural fit. It's high energy. The beat is usually pretty clear. I don't have to decide what to do if I am following. Your feet do the same thing for the most part, and the lead tells you where to go with body cues. It's social interaction but not too much, since each song is generally under five minutes. And the touching is scripted, so it worked for me. It's also generally not electronic music.

I did make friends dancing, but ultimately it's ableist as shit. Nah, the ADA doesn't apply to us, you're an asshole for saying it does. Nah, it's totally cool to go to an event that hired someone to assault you with a flash, we really wanted to go why are you mad at us?

I miss swing dancing but swing dancers, especially here, can go fuck themselves. I miss people trying to get me dizzy. I do. But I can't deal with the environment. At all. Jesus doesn't mean the ADA doesn't apply to you. Oh yes, that's a thing I was told. So as much as I love swing dancing, working with a partner so everyone has fun, I can't deal with the events.

Then there was modern. I actually wrote a post about modern dance on this blog, sort of. The format was extremely accessible and the teacher wanted students to learn more than he wanted them to Become Dancers. Some of the movements were alien to me, but it was fun and progress was seen as good. My flexibility was also not an excuse to expect ridiculous things from me.

Around this time I also attended a belly dancing class with a friend of mine, although I had iffy feelings about it and cultural appropriation. I hated the first teacher instantly for her autistic hate (she has A Brother) and for the way that she didn't adjust her teaching, at all, for the learning and body styles of the students. Throwing advanced things at us and saying "oh just relax" doesn't work for me. Our second teacher spoke biomechanics, so that actually did work for me and I learned a lot. She also taught the way I learn choreography (show me once. Do it with me twice. There we go now you know). Alas, she said things that were low key racist and then high key ableist. So we were done there. The last teacher we tried...said things high key racist and I was done. I've also decided that belly dance is not mine to do, but the holy shit bigotry from teachers didn't help.

Dance has been a mixed bag. I am glad I tried it, even tap, but the culture is so hit or miss that whether a class will be great or terrible is a hard guess. In a perfect world all kids could be safely exposed to dance but we clearly don't live in that world.

Sunday, March 26, 2017

Why gymnastics? (athletic autistic series)

My longest lasting and arguably most successful athletic endeavor was gymnastics. I took tumbling classes when i was little, messed around in the yard, took classes again, competed, coached, competed while coaching, retired suddenly and unwillingly, coached more, did 2 more meets while coaching, and judged.

I do a lot of things, I love a lot of things, but gymnastics is arguably my soul. It's been an enduring passion. And my mother hated it, but I loved it enough to keep fighting to do it.

There's reasons for gymnastics of all things. They're not the kid doing cartwheels on the playground legends you hear, but they are reasons nonetheless.

I don't look like a gymnast. Well, that's untrue actually. I'm built basically exactly like Svetlana Boginskaya, a gymnastics legend who competed in 3 Olympics. But she doesn't look like your classic 80s & 90s gymnast either. I'm legs and arms and limbs and moved like I was only vaguely aware of my extremities. But as far as my mom was concerned, I was going to be taller than 5' so I was too tall to be a gymnast, she can't touch her toes so I am not flexible enough to be a gymnast (yes, really, she said that), and basically it was the worst sport ever. My mom loathed my choice in sports until the day she died, but it was my first love.

The first thing that drew me to the gym is that it's pretty. It's so pretty. The physics, just watching, demand to be analyzed. I found that captivating. And each gymnast makes each apparatus her own. The individual nature also really worked for me. I didn't quite understand the whole team competition thing, and until you're competing for college or your country you're competing as an individual anyway. I could only mess it up for myself, not for anyone else. No one could be mad at me for not being able to do what they wanted of me. My performance was only affecting me. There were no mystical codes of how to teamwork in gymnastics like there are in team sports.

The things that kept me in the gym are numerous. I had gifted coaches--not gifted in the art of creating little gym-bots who win no matter what, but gifted in the art of meeting their athletes where they are, in finding new ways to approach challenging skills, in knowing when to push and when to stop pushing. They worked with us rather than on us. And they trained everyone as though they'd compete some day, instead of deciding some kids had what it takes and some never will early in a budding gymnast's career. In one of those gyms I'd have been done very quickly, as it was a long process for me to develop any skill at all.

The sensory aspects are of course the thing people think of when they think of autistic gymnast, and that's true. I like crashing into things. I got to crash into the ground a lot. I don't get dizzy but I do love to try. I got to try in new and exciting ways in the gym. Things bounce, and spinning and flipping is a vestibular stimmer's dream.  As far as sensory integration goes, gymnastics was better than any sensory integration therapy available in my hometown, and more fun. But they aren't the only thing.

The thing about gymnastics is that you have never learned all of it. There's always a new skill or a new combination. And you have to adjust your physics just so in order to master it. And perfection is a goal, but it's a goal no one can actually meet, and everyone knows that. Everyone goes for perfect, sure, but it's not like when people seriously think that's a reasonable thing to expect. It was a place where I was allowed to not be perfect, because no one is perfect, and where I was allowed to not know how to do things, because no one knows everything in gymnastics. Even people who have skills named for them don't. Because there's so much to learn and some things just won't ever work for one person and that's ok, you can try something else and that may work better. Being allowed to find things that worked better than the little box my mom and school and everyone wanted for me? That tasted like freedom.

Granted, freedom tastes like sweat and blood and pushups and mats the smell like feet. But it turns out I like pushups and don't mind mats that smell like feet, when my abilities and inabilities are taken into consideration. When my fears are seen as rational. When failing is met with the assumption that I tried my hardest and just couldn't, rather than with the assumption that I am defiant and noncompliant and need to be punished or ignored. It was the first place where I was allowed to not be able to do things without it being treated like I was unable to do them at someone.

Because my failures were treated as part of the learning process instead of as me being a butthead, I learned from them. I was this awkward weak little kid, right? I was made of rubber but seriously just rubber. I was not a naturally strong kid any more than I was a naturally graceful kid. Autistic kids, disabled kids in general really, tend to be treated like anything we can't do on the first try is a thing we will never be able to do, but gymnastics isn't like that. If you can't do the skill, you do more drills, you condition more, you stretch more, you try again. You fall? Try again. You can do it 10% of the time? Try again and then it'll be 20% and then 40% and then 98%. That 2% of the time you can't do the thing you can totally do? That's not because you are autistic or because you are being difficult, it's because no one is actually 100% on anything. Very close yes, but anyone can miss something that they basically have mastered. It happens. It's a thing. Your failures may be vanishingly rare, but anyone can mess up and that's life.

So I found my body parts by finding them over and over and controlling them in gymnastics. Because everyone was learning mastery of their bodies...I learned mastery of my body. And learning to do a backhandspring is way more rewarding than touching nose. When you can do backhandsprings you get to do back tucks. And then back layouts. And then twisting layouts. And on and on and on. When you touch nose you get to listen to other boring orders. The corrections in gymnastics actually mean something. No one was telling me to do things so they could control me. They were telling me to do things so that I could control myself, at greater velocities or amplitudes. Implementing what they told me was rewarding, intrinsically, for me. It didn't earn a token. It meant I did this ridiculously hard thing that I wanted to be able to do for myself. In a world where I was expected to do the things everyone else wanted me to do, it was all about the "do this because then you can do this and that's awesome".

And once I found my body parts? I found poise and confidence too. I was good at something, not because someone built me from raw parts (no more than any other gymnast) but because I did the work. You can't hand over hand all those push ups. Muscles don't work that way. It was a success no one else could claim. Those trophies were mine. Those oohs and aaaahs at the spring show were mine. I learned to cover every inch of ground I walked on, and that I deserved to. It was a place to be proud instead of being ashamed that I care about things. Gymnasts can be intense. It's not a liability to be single minded when you're attacking a new skill.

As I got too injured to continue, I still got to pass on the sport, too. And I get to judge. People never think of autistic people as being good at these things, but we can be. The devil is in the details and gymnastics is all details. Analyzing what is going wrong, conveying it as a coach or quantifying it as a judge, that's totally an autistic-friendly thing to do. Details. Yes I will tell you, young person who wants to fly, every detail. And we will work them out together, and you can defy gravity too.

Gymnastics is why I can do so much of what I do now. It's why I can do the athletic pursuits I still pursue. It's why I can present--and where I learned to own the stage while doing so. It helped me find the edges of my body when early intervention sought to teach me they didn't even exist, that I was just an extension of other people. Gymnastics may very well be why I am still here at all.

So fuck yeah gymnastics.


Saturday, March 25, 2017

I'm kind of a jock and that's ok--series introduction

A common stereotype about autistic people is that we are unathletic, that we are bad at sports, that we don't like to move our bodies.

This is not strictly true. However, our community is full of people who have had really bad experiences with sports and other physical activity because the environment was wrong or the instructors were wrong or the activity was a mismatch. I have had some of those experiences, but I've also had some great ones.

I did gymnastics, and it was wonderful. I danced, and the activity was fun but the people were Problems. I played both wheelchair and on feets basketball (at college and in middle school, respectively) and it worked out ok. I do archery and while my favorite range isn't open in the winter, it's a thing and it works for me. I currently do aikido and it's managing to fill the gymnastics shaped hole in my life enough that I no longer dream about going back to the gym (that's pretty amazing).

There's reasons these things worked. Some are in common among all of them. There's reasons the environments did, or didn't, work. There's common themes. And the prevailing wisdom is that we are bad at moving our bodies and we're in a weird space with access to such activities anyway that it's important to offer an exception, if you will.

So over the next week or so I will be writing about the structured movement things I do, to offer a narrative of "actually we totally can do this".


I'm kind of a jock and that's okay.

Wednesday, March 22, 2017

Your therapy likely IS like that, or at least your attitude is

Another day, another parent going on and on about how their ABA is Not Like That, because reasons.

This is a problem all by itself, but the thing is, the act of doing this very much proved that their ABA is exactly like that, in attitude if not in the wrestling tiny children to the ground mechanics.

Why?

Because it was immediately after an autistic person said "do not come at me with my ABA is Not Like That, and go read The ME Book before defending it at me at all".This is a hard boundary folks. And when parents trample that boundary, they're saying a whole lot.

Namely, they're saying that they do not believe autistic people have a right to have boundaries. Actions speak, folks, and that's what your say. What you want to say is more important than not trampling over a very clear line that is drawn for self protective purposes.

Funny thing, this attitude--is exactly the attitude of ABA based therapies. Autistic people don't get boundaries. Neurotypical people get what they want and to hell with what autistic people need or want, what the Real Person in this situation wants is what matters. No, you don't get to draw the most basic line for self protection, because the Real Person will just ignore it. It inconveniences them. They don't like it.

Speaking of things to not come at me with "well I would respect my child's wishes if they would just tell me". That is the biggest crock of shit and we both know it. You won't respect a clearly stated in concrete direct words boundary from an adult. You want me to believe you'd accept one from a child? No honey no. I know better. You've internalized that autistic people's needs are less worthy than your wants and convenience and desire, and you live in a society that treats children as lesser even when they're abled.

So yeah. Your therapy probably is like that. If it wasn't you'd listen when I told you the prerequisites to having this conversation with me. Your kid needs you to check yourself. Now. Years ago quite possibly. You need to observe their boundaries, and you need to observe mine.

We don't owe you shit. We do it for your kids. Don't break them as badly as we were broken. Observe their boundaries now and make others do the same.

Fix your goddamn attitude.

Wednesday, March 8, 2017

Autism Meet Up Groups ARE NOT for "finding a girlfriend"

Autistic dudes, and yes I do mean dudes, specifically straight cis dudes, and moms of autistic straight dudes as well, we need to have a conversation. By which I mean I am going to tell you to stop doing something, you're going to cry about it, and it's not going to be my problem at all. You're going to persist in making it my problem no matter what I do, but it's not.

Gentlemen, stop going to autism meetups to 'find a girlfriend'. Stop. No. Do not collect go do not collect $200. Do not do this.

I can already see you whining "but how am I supposed to get a girlfriend?" as though that is my responsibility. And that's the problem. Autistic men come to autistic groups with the sole goal of finding someone who will take over for their mom in keeping him fed and all that, and also have sex with them. And that's awful. Don't do that.

First, we do not owe you shit. "We're both autistic and you make my pants tingle" is not a basis for a relationship. I am not your mom. If I wanted a son I'd make one who was smaller than me and who I could raise to not be a manchild who felt entitled to women's labor and attention. I do not want a son. I especially do not want to adopt you and also have sex with you. That dynamic is fucked up, dudes.

Second, you're being awfully presumptuous there. What if I told you--many to most of the people you are assuming are straight women are not? Maybe they aren't straight. Maybe they aren't women. Maybe they are neither straight nor women. But a large number of people you're hitting up for a date are not attracted to men, or not attracted primarily to men, or only sometimes attracted to men, or not attracted to anyone. So you could be the best catch on earth--and, sorry gents, you are not, there's only one of them and I don't know who he is but I highly doubt he is reading this blog--and many a person there who you think you are interested in would never be interested in you!

Third, my dude, "I am a boy, you are a girl, can I make it any more obvious?" is not a basis for a relationship. At all. You have no business "getting a girlfriend" if you can't manage to be friends with people who happen to be girls. You do not just go to the girlfriend store and get monogamous heteronormative bliss off the shelves. You have to meet people. You have to get to know them as people. That trope where people dislike their romantic partner? It does not make sense! It's totally a thing in media but it is not how reality land works. In a healthy relationship, you like each other as people. "Go get a girlfriend" may seem like a milestone for you but that is treating women as objects rather than people. And she may be under loads of pressure to get a boyfriend, but that doesn't mean that you are a good choice for her. Don't be this guy. Just don't.

Fourth, you have to bring something to the table. The guys who go to autism events to "find a girlfriend" tend to bring naught but neediness. If you rely on your mom for your day to day everything, you're probably not dateable. Sorrynotsorry. I'm not in a position to take over for your mom, I can barely take care of myself. You do know that autistic women have difficulties too, right? We totally do. That's...why we are at autism events. Because we are autistic. I can't take over for your mom even if I want to. Which I don't. There's something that makes my nethers whither forever at the idea of adopting a son my age and having sex with him, and that's what so many of these dudes are looking for. No. No. Ugh. I am so very not into that.

And even if you do have your shit as together or more together than I do? That doesn't mean you have attractive qualities. Are you super hot? Funny? Kind? Interesting? A lot of the guys who hit on me at these things are...none of the above. No one likes to date boring unpleasant people. Autistic women are allowed standards. And "well she's really hot and autistic so I want to date her" gets exactly nowhere with me. Great! Your pants are tingling! That is a personal problem! For you to work on! Yourself!

And mothers of autistic straight men, this is for you: do not approach an autistic woman and ask her to go out with your son. Ever. Are you fucking serious what makes you think that is a good idea?

I've been approached by over a dozen mothers who thought I was pretty and would be a good influence on their sons. Lady, no. "Unable to approach me himself" is a hard no. Are you going to follow him into the bedroom and remind him to use a condom too? Where the clitoris is? Nah I can't see you even caring about that part, because you cold approach autistic women to guilt them into dating your son.

That is so inappropriate. What the fuck, allistic moms?


Straight autistic men, if you want to go on dates, be dateable. Clean up yourself. Wear clothes. Clean ones. Every day. Do your own laundry, even. Find hobbies. Find interesting hobbies, not whining about lack of girlfriend. Make friends with no ulterior motives to get in their pants. Be around people you like interacting with. Make friends, and this is important, even with people who don't get your motor going at all. And don't be a jackass trying to make them feel bad about it either, women do not exist as prizes for you to win or things to make your junk happy. When you do meet someone who you are attracted to, don't rush to the "women find autistic men repulsive date me?" thing. That behavior is what women find repulsive. Get to know her as a person. And don't be a whiny pissbaby when things are not mutual.

Be kind. Unlearn bigotry. See people as people. Become an interesting person. Worry about that.

And for fucks sake stop going to autism meetups to "meet a girlfriend". Stop being the reason that autistic women have no social support. We do not like being swarmed by horny entitled dudes. A good organizer will kick your ass out for that. Don't test the mettle of organizers. Organizers, stand up for the women in the group when a man does this.

Also be aware we talk. Every autistic woman I know knows the names of the entitled manchildren who want me to take care of them and their pants tingles. And I know the names of the men who do this to my friends.

Be better than this for the love of all that is holy please.

Friday, March 3, 2017

Disability Day of Mourning: about the victims and no one else

Wednesday was the annual Disability Day of Mourning, when disabled people and our supporters gather and hold vigils and read the names of the hundreds of disabled people murdered by caregivers. In addition to holding meatspace vigils, there is an online vigil and people make their observance known in other ways across social media and in person, as their abilities and inclinations allow.

This post isn't about that much, except that the list is SO LONG. SO. LONG. Y'ALL. Starting with 2016 (it was cold, rainy, and a very late start) it still took half an hour to read names without causes of death. That's upsetting.

But what this post is about is the reactions of...certain individuals...to the existence of DDoM.

The Disability Day of Mourning is about remembering the disabled victims of caregiver violence, who are so often erased from their own stories, who are made to be the bad guys in their own murders. That is what it is about. That is who it is about.

So why are parents of disabled people making it about them? Why is the knee jerk reaction of so many parents "stop demonizing me" and "not all parents" and "acknowledge how hard it is!!!!"

Y'all. Listen to yourselves.

If you did not kill your disabled family member, you don't get a cookie, and DDoM is in no way about you. No shit "not all parents", this is not about parents. It is about disabled people, who are people in our own right, not just as appendages to Real People like yourselves. And everyone goddamn acknowledges your shoes all the fucking time. DDoM started because, after the murder of George Hodgins, the Autism Society of America put out a story about "the tragedy of Elizabeth Hodgins" that didn't even mention George's name. That's how bad the erasure is here.

We needed a vigil, done by us, to have our deaths at least be about us rather than about how we inconvenience those around us.

It is not about you. If you feel attacked by the very existence of an event, one day a year, to remember people murdered by caregivers, dig deep and think about why that is. Do you relate to the killers a bit too much? Do you struggle to see disabled people as people rather than as appendages to those you can see as people? Really contemplate, rather than lashing out at people who are mourning.

Even if you won't mourn with us, allow us our grief. The people we remember on DDoM deserve to be cried for, and we deserve room for our pain. Let us have that. It's one day a year that isn't about your shoes. Let us have one day where we can be mournful about people ripped from our communities without making it about someone else's goddamn shoes.


Sunday, February 26, 2017

I hope you're proud of yourselves.

I live in the United States, where the political situation is best described as "we are watching the rise of a fascist dictatorship". A+ well done America.

But that's not who I am addressing.

Parents, I am talking to you. Particularly if you support Awareness(TM) and pushes for intensive intervention.

I've met you. A large number of you consider yourselves liberal or even progressive. A large number of you would claim to not support this. A large number of you threatened to move to Canada if this happened.

And that's why I hope you're fucking proud of yourselves.

Not only did you give money to an organization run by a man who supported the Mango Menace, but also you shot yourself in the "running to Canada" foot.

No one will take you now, and it's your fault. I mean, you destined me to fucking rot here, but y'all are all for my death anyway and don't pretend you aren't, I have a file of threats.

No one will take you either and it's your own doing.

Every time you demand 40h/week intensive, expensive therapy? You damned yourself. Every time you complained about how expensive an autistic child is? You damned yourself. Every time you threw a big public fit about what a pain in the ass your child is? You damned yourself.

Because of your Awareness, autism is now a named visa exclusion for many many countries. You have everyone convinced we cost much more than an average child and that we're hopeless drains on everyone else.

All so you could get tea and sympathy at the expense of your child. All in the name of support for yourself, the only real person in the situation.

Never did you think ahead to "maybe the US isn't going to always be a liveable situation", surely you didn't stop to think about how your child may not want to live here for whatever reason. It was all about your tea and sympathy and self pity.

And now you can't run away to Canada or the UK or anywhere else either! And yes, you fucked over me and mine. But you're stuck here too and even as I know I'm dying horribly (aren't you sad it wasn't by your hand? I know at least a dozen of you are) I can point and laugh pettily because you are stuck here too, in this cesspit of a Nazi run dictatorship.

A+ foresight, y'all. Well done.

I hope you're fucking proud. Just know it wasn't worth it. 

Monday, February 13, 2017

Empatica Embrace review, also a moving announcement sort of

 This is the first thing I've written here in a while. For Reasons (like needing to eat) I have made the decision to monetize, while still allowing access to the free content that is why people followed me to begin with. To support me & my writing, please visit My Patreon
 
I kickstarted the Empatica Embrace, a watch that may be able to reduce SUDEP (sudden unexpected death in epilepsy) by detecting seizures via galvanic skin response + motion detection. With a bluetooth connection to a cell phone, it will also alert designated people about a seizure.
 
In theory this is awesome right? The other data tracking it offers (sleep, exercise/activity) are also pretty cool, and the ability to add seizures that it missed? Sign me up. I was super excited.
 
Except...not so much. First, it arrived over 2 months late. It took over a day to fully charge, rather than the indicated two hours, and this did not speed up until I ignored the device entirely for over a month. Finally it charges up faster than it runs down, but it took some time.
 
Data collection is also iffy. It can't really tell anxiety from physical activity, and it has false alarmed at panic attacks and at bumpy roads. It also decided that 12% of its memory will never make it into my account ever. That's just swell.
To add to the data differentiation issue--the bluetooth feature is terrible. It'll lose connection for no reason a hundred times a day. I have to reset the phone and the bluetooth multiple times each day and I have had to reinstall the Alert app over a dozen times. Since it decided to no longer upload all the information, there's a pretty strong risk of it not recording all the relevant data, as it won't just overwrite that 12%. It's silly that it won't talk to my phone when said phone is in my pocket, but it's completely absurd that they can't communicate when the watch is sitting on top of the phone. 
 
The one time it does consistently talk to my phone is when it is time for the false alarm going over the bridge to school. Every day it goes off, every day I mark it false, and the next day it does the same thing. Supposedly if I tap the watch face it will register that the alarm is false instead of sending the call, but that does not seem to be true in reality.
 
Oh and how very alarming that call and text tend to be! They are not customizeable. "K needs your help" is what it says and what it sends. That's an alarming thing to get, even when you know it is probably a false alarm because it's time for me to head to school. Given my way it would just say "This is an alert from K's embrace" or something of that nature, but they won't do customizeable messages.
 
Less irritating than all of this (but a big issue when I recieved the device, everything else is just so much more), and yet still a problem: the device appears to be designed for an average sized adult wrist, although Empatica has been marketing the device to parents of epileptic children. There is no way this is going to properly fit your average child. The face takes up the entirety of the broad side of my wrist. The elastic strap does go tight enough, but that will not bend the rigid part around. Empatica suggests ankle wear, and I did try this, but the elastic strap cuts into the Achille's tendon and this is really uncomfortable and sucks and I couldn't deal with it, nor do I expect most children could. 
 
Finally, support for the Embrace is truly abysmal. They know my issues with the device, before you ask--I've tried for months to get a return and refund. They'll helpfully condescendingly tell you to do the same thing you just did, but there's no way to exchange a malfunctioning device or return one that doesn't work at all. 
 
In pros it does keep good time, if you can read analog. And I guess it's sort of cyberpunk looking if you are into that. 
 
I'd recommend against wasting your money.