Radical Neurodivergence Speaking

A Friend of a Friend Values Disabled Lives

2012-02-24T12:29:00.003-08:00

Ok. So.

A friend of mine has a friend. Well, more than one friend I'm sure.

Anyway. This friend of my friend and her husband wish to adopt 2 little girls with Down Syndrome from Eastern Europe. They are choosing, selecting, to embrace two children with disabilities. Given how society talks about disability, that's kind of awesome.

Where these girls were born, disabled lives are apparently less valued than here. At around age 5, disabled orphans are put in institutions.

Not cool.

International adoption (and I know, there are issues with international adoption. In my humble opinion there are bigger issues with institutionalization) is expensive. This is where you come in.

Assuming this link works, there's a dream funding sort of contest here: American Family Insurance Dream Contest thingy
The website is absolutely awful in terms of navigation, and it does require registration, which is a pain too. So if it gives you something ridiculous (the box was in the lower left corner for me), it's Jennifer W. of Oregon under the family category. If you can gather the spoons to vote...2 more kids with disabilities will have a loving home.

I'm not just activism

2012-02-18T16:25:00.000-08:00

How to provoke a full scale meltdown while trying to do the opposite:

Bring up my activism, especially as it relates to a kid I actually know, when I am already upset or feeling insecure or unvalued for whatever reason.

Wait, what? Activism is important and awesome!

I never said it isn't. But doing activism sucks. It is difficult. It is unpleasant. People say truly abominable things to me and about me, they lie about me, they attack people I care about deeply, they physically threaten (or occasionally attack) me. It never ends. There's always a battle, it is always uphill, it always sucks. Activism forces me to use skills I am not actually good at to try to get society to do things people don't want to do because in their eyes I and people like me don't deserve them.

Activism drains me. But I do it anyway, because I feel a deep responsibility to the neurodivergent kids I know, and the ones I don't know. It is my job to help people like me build a world that doesn't attack us for existing. If I don't fight a lot of these fights, no one else will, and then I have failed people who are going to have their own shit to work through. That sucks.

The bad thing about accomplishing things in something as unforgiving as activism is that no matter what, you're expected to keep going, and it sucks. The bad thing about accomplishing things in regards to activism is that keeping going becomes your only value.

I do more than activism, though. I am more than activism. But that doesn't mean I am valued as more than an activist. Sometimes I wish more than anything I could quit, but I know, just know, that the only reason people tolerate my presence on this planet is that I get shit done. If I am no longer useful, I no longer matter. No matter how thoroughly exhausted I am with everything, if I don't keep going, don't keep fighting, my existence no longer has meaning, I no longer have meaning, there is no point to the continued existence of Neurodivergent K.

It's a lot of pressure, being only known or respected or liked or whatever because of doing hard shit. If I fail, I don't just fail at fixing the things I was fixing. I fail at being even remotely worthwhile as a person, because all I am defined as seems to be activism.

And that isn't what I want. I cannot handle that. If I were to quit activism tomorrow, or next week, or next month, or next year, I need to still matter because I am a worthwhile person. Not just because I get shit done, but because, activism or not, I matter.

I need to be more than my advocacy. I have to.

Skepticism's Ableism Problem

2012-02-07T21:02:00.000-08:00

I have a new drinking game for reading the comments on Freethought Blogs. All of them. Bet you can figure out what it is.

You bet your ass that if a post is about asinine behavior, someone in the comments will internet-diagnose the person in question with Aspergers/an ASD. Because, of course, all autistics & Aspies et cetera behave so out-of-the-norm asshattedly as to come to the attention of fairly widely read bloggers. And obviously, autism is the only thing that could possibly make someone such an asshat.

Except no.

I mostly see this, actually, in the context of misogynist deed being committed, someone says "well duh, Aspie dude" or something to that effect. The dude in question has never in any of these threads been listed as autistic. Ever. Except by NT onlookers who are looking for a reason to feel superior-"I'm not a misogynist" isn't enough, they've got to exert their NT privilege too!

Fun fact, y'all. We're skeptics too. And as an autistic woman, I cannot tell in which way I feel less welcome in the community. The sexism is awful, and the way you try to blame it on people with my fucking neurology is not acceptable.

Now excuse me, I need to go do a shot for each instance of "dumbass" and "stupid" and a whole bottle for the "asshole=autism" thing.

Aren't you an enlightened bunch?

Apparently not.

Shaking the unshakeable

2012-02-03T22:56:00.000-08:00

For some reason people think I'm a lot more confident than I am. I'm not. I live with a lot of anxiety and near crippling self doubt. However, I firmly believe that my fights are worth fighting.

Let me have that.

There's a systemic process that people use to break this kind of thing, to convince people that what they know and see and perceive and feel isn't real or accurate.

It's called gaslighting, and it's abuse.

Every time you tell someone that they are too sensitive, they are overreacting, they didn't mean it that way, you are gaslighting. And that is abuse.

Every time you tell someone with a disability that they aren't a really real disabled person, you are gaslighting, and that's abuse.

Every time you try to convince someone with a disability that they are too high functioning to talk accurately about that disability, you are gaslighting. That's abuse.

Every time you tell someone that enforcing their access needs is unreasonable, you are gaslighting. That's abuse.

Every time you tell someone that defending themselves against others hurting them is 'abusive', you are gaslighting. And that is abuse.

Every time you tell someone that they have to understand why someone did or said something hurtful, they didn't mean it about them, you are gaslighting. That's abuse.

When you tell someone on the receiving end of prejudice or injustice that they're imagining it, you are gaslighting. That is abuse.

You aren't the first person who thought to tell us that we're oversensitive or being unreasonable with our needs or that our perceptions are wrong or whatever. Gaslighting is common.

And it is abuse.

Trying to shake someone's sense that what they know, see, and think is true, trying to convince them they're just making shit up? Just so you don't have to listen to them? Just to break them down?

That is abuse. It is disgusting. It is an absolutely hateful thing to do to anyone. It's also a favorite tactic of all sorts of shitty people. And make no mistake, if you do this sort of thing you are a shitty person.

When you engage in this kind of thing, the planting and cultivating of self doubt, it'll work for a while. It won't get me to shut up though. It'll make me anxious as I try to figure out what is real and what is made up and who made it up and why and what I did wrong to make them think that was ok.

And I know the answer is it isn't ok. It is gaslighting. Gaslighting is abuse. But it is sneaky and it leaves marks, marks that no one can see.

Growing someone else's self doubt so that you don't have to change your thinking or your action?

That shit's abuse. You should know better. Stop doing it.

You're disabled & demand access, GTFO.

2012-01-25T21:57:00.000-08:00

This past week I wrote two blog posts about my increasing frustration with the events of Portland swing dance. This first one was basically an explanation of...why I won't pay upward of $100 to again be assaulted by a photographer & be told that the event organizers won't do anything about it. I know, I am so damn unreasonable.

This one, featuring a comment stuck in the spam trap & a photo of inadequate passive aggressive signage was a followup to both that and a "seriously? Does anyone think this sign is remotely approaching acceptable?" It's the size of a damn potholder!

Apparently someone doesn't like getting criticized on the internet, since I got an email from Mindy Hazeltine telling me that I may not go to Stumptown dance events anymore, for reasons that amount to "you are disabled and willing to make people uncomfortable to ensure your access."

That's right.

The kids who throw each other & almost drop each other on their heads? They're cool. The guy who regularly throws his follows into other couples & grinds all on new ladies? Oh, he's fine too. The retired military man who takes photos up shirts & down skirts and who has gotten into physical altercations on the dance floor? Yeah, he's all good too, just like the assaulty Evrim.

But oh man, be epileptic & insist on your access? GTFO! EMOTIONAL ABUSE! Make it much harder to switch out the good sign for the bad sign by removing it so the only choice is the good sign? OMG LARCENY. When Stumptown Dance promises to make an announcement & to talk to flashing people, and then fails, what am I supposed to do? Oh right. Be niiiiiiiice. Because it's totally expected to be niiiiiiiiiiice to people who are hurting you rightthissecond.

I wrote about that, actually. Over a year ago. I am not required to be nice. You are, however, required to not kill me. I know, I know, it makes you feel bad to be told, not asked, that you shouldn't kill me. I'm looking for a fuck to give, can't find one. Not feeling bad is not a right. Not being killed is. I wrote about this derailment, argument from tone in lateish 2011. Cuz "you were mean in telling me to not kill you" is a spurious argument, and people need to stop making it. As I wrote as one of the very first posts here, I shouldn't have to beg.

I briefly mentioned the whole flash photography issue in my BADD 2011 post, too. Being a one person anti strobe league for this long? It's hard. You get tired. You get real tired when people are like "you are inconvenient. Pay me to hurt you, or go away. I won't do the legally required accommodations because I don't want to!

A long time ago I wrote a post, Epilepsy Is, again inspired by the ableist treatment at Stumptown Dance events and the assaults by Mr Icoz and the resulting lack of acceptable resolution by Portland Lindy Society. One of the first posts on this blog was also about dance, and the ableism I've been fighting since day 1: Why This is a Battle Worth Fighting.

This is a long-standing problematic pattern. It doesn't matter if you don't find it 'convenient', or if you believe epilepsy is really demons, or whatever. The fact of the matter is there is a law, and excluding someone for insisting the law is followed rather than excluding those who will not keep it, that is a special kind of bigoted.

COMMENT CAUGHT IN THE SPAM TRAP.

2012-01-25T10:10:00.000-08:00

Why? Because my mother dying doesn't mean there's not advocacy work to be done, that's why. Let's play "spot the bullshit!"

From "anonymous lindy hopper":
FWIW I am not involved in organizing the event, but I do know many event organizers both in and out of the lindy hop world and I doubt that any of them could afford to implement everything that the ADA could possibly require (and for the most part there's no need to). I truly believe that an organization should make their event as accessible and enjoyable to everyone and I'm glad the ADA tries to enforce this, I am just trying to suggest proactive ways to ensure the writer of the blog can ensure and maintain good relations with the organizers."

First, I am pretty sure I know who you are.
Second, it is the event organizers' job to "ensure and maintain good relations" with the customers. You don't get to say "You have needs that are inconvenient, though completely free to accommodate, but I DON'T WANT TO SO GIVE ME MONEY TO HURT YOU." It does. Not. Work. That. Way.

Third, a picture is worth a billion trillion words. Here is the sign that an organization with a lot of crossover with the people who put on PLX thinks is acceptable acquiescence:

Please note the potholder. It's there for perspective. Cuz not only is it worded as circuituitously as possible, it's also the size of a damn potholder.

The sign I printed out, which this other organization (that I suspect "anonymous lindy hopper" is deeply involved in) keeps losing, looks like this:

It says "NO FLASH PHOTOGRAPHY" above and "Thank you for your cooperation" below. It takes up a whole 8.5x11 sheet of paper, which is the minimum to get anyone to look at anything. And it did not take any special skillz or money to make-I did it in about 3 minutes, so neither time nor money are an investment here.

I left a whole lot more bullshit unpointed out, so everyone can play!

ETA: Obviously nothing I am asking for costs anything. Well, maybe kicking Assaulty Camera Guy (Evrim Icoz, for those playing along at home) out does, but so does paying him, & paying people to assault your customers is a really good way to get them to not come back and write a blog post that says that Portland Lindy Society paid Evrim Icoz to assault me with a strobe light at Portland Lindy Exchange. Other than that, no idea what the purpose of that straw argument is. Ideas, neurodivergents?

Conflicted Emotions.

2012-01-23T22:04:00.000-08:00

This is what I wrote down trying to process my feelings & thoughts after learning of my mother's death. It's all very jumbly & confusing

So this weekend my mother died, & I'm not sure how I feel or how I'm supposed to feel or really anything. Those of you who know me know that I've not had a relationship with my mom for years, but that doesn't prevent the emotional confusion.

The last thing my mother said to me was "get a real job or die on the street." I was extremely, obviously ill at the time, & that was what she had to say. She had spent the previous several years hurting my physically-I have dents in my skull that I was not born with-and verbally abusing me and justifying her husband's abuse of me. So, if that is my mother, if that is who she is, then how I feel right now is probably appropriate and normal. Mourning one's abuser and tormentor isn't something that is reasonable to expect of anyone. Numbness, if not outright relief, is a reasonable thing to expect.

But my mother wasn't always like that. When I was young, she fought for my intelligence and capabilities to be recognized. When I was being tormented at school by teachers and students alike, she logged many many hours talking to teachers and parents of other kids in my classes. I've been having roughly identical "WHY IS EVERYTHING SO DAMN DIFFICULT?!?!?" meltdowns since I was about seven years old. When I was little she'd squish me tight, stroke my hair, & say "I don't know, punkin. I just don't know." She didn't understand me by any stretch of the imagination, but the mom I had when I was little sure tried. She made mistakes, as do all parents, some of them pretty huge, as with all parents, but the mom I had when I was little was doing everything in her power to do what was best for me.

And that's what makes this so complex & difficult. The mother of Little K was a woman worth mourning. The mother of Adult K was scary & upredictable & abusive, and not ever dealing with her again is a relief. But I had it in my head that Little K's mom could be somehow revived.

That's probably not the case though. Little K's mom died a long time ago, I think, even though her body never went anywhere. I think I knew that and did my mourning and mental burying a long time ago. The scary person occupying her body is not the mother I could once depend on to always be on my side, even when she didn't understand why that was my side.

So being numb is probably ok. I think I came to terms with my mother's death years ago and just hadn't thought of it that way. Feeling guilty about being numb, probably also ok, but not necessary. Or something. I don't know.

Guest Post-To The Parents Of Newly Diagnosed Kids

2012-01-21T21:41:00.000-08:00

A friend of mine, pseudonym of Gen Eric, wrote this. It's great & wholly unedited, except for some HTML fixin'. Enjoy.

Your child is probably between the ages of two and five, possibly older (even much older) and possibly (though unlikely) younger. Your child was probably developing just like any typical child until slowly, and almost without explanation, things seemed to take an unusual turn. Maybe they lost speech, or eye contact, or just started doing “unusual” things like stacking or lining objects. Frantically you run for a medical professional, who looks your child over, does some tests, takes you into a room, and tells you a word you’ve been conditioned since childhood to fear.

Autism. (DUNN DUNN DUNN, DUNNNNNNNNNNNNNNNNNN!!!!!!!!!!!!!!!)

Your heart sinks. Your dreams of college graduation and grandchildren seemingly fly out the window. This professional probably fills your head with images of someone who will never relate to the world, never get a job, never live independently. Running to the Internet, all you seem to find is tales of financial ruin and broken families. You sink into a deep depression and desperation. How can this child, who was so normal only a month ago, suddenly “vanish” into this “void?” Obviously they just got sick, or trapped, and it’s your job to rescue them.

Now that all that unpleasant business is out of the way, I only have two things to say to you: welcome, and don’t be afraid.

Welcome to a fascinating new adventure with your child. Welcome to learning more about yourself than you ever thought possible. Welcome to a true autistic community that is ready to accept you with open arms.

Don’t be afraid, because autism is nothing to be afraid of. The media has been filling your mind with “autiephobia” since before you can remember. The autism industry is no better, and is actually much worse. They need to keep you afraid so you’ll buy every pill, potion, and behavioral “treatment” they offer, in classic medicine-show style. They need to keep you afraid so you’ll keep donating, keep walking to bring in donations; if you don’t, where will they get their exorbitant salaries? If you give in to the fear, it will consume you and your child. If you stand up to the fear, it will eventually back down.

I call this an adventure, but remember, it’s not an adventure that ends with a normal or “recovered” child. Your child could regain speech, get mainstreamed, succeed in college and work, marry, and have children, or none of those things, or any combination thereof; but no matter what they’ll still be autistic, every bit as autistic as they were the day they were diagnosed. There is no such thing as a “cure,” and there is no normal child who got sick or trapped in some autistic shell. The only thing the “cure” industry does is to give you a stone to make your soup, then sit back and declare victory when your child naturally develops.

It’s true that with behavioral “therapy” (animal training), your child may learn to look, and act, normal, but they won’t be. All they’ll be is an autistic person who is afraid, or ashamed, to be an autistic person, and loaded with a host of mental baggage. They may even harbor a deep resentment towards you, which is the last thing any parent could want. Your child is unique, and will always experience the world as an autistic person, and that’s not a bad thing.

The autism industry tries to paint neurodiversity and autistic self-advocacy as some kind of anti-parent cabal of “high functioning” “aspies,” who instinctively hate you for trying to cure your horribly ill child. The truth is that neurodiversity activists are as unique as autistic people themselves. Most of us are autistic, but not all. Some of us have an autistic child or other family member, some are romantically involved with an autistic person, and some of us got into neurodiversity through an autistic friend. Some of us are labeled “high functioning,” some of us are labeled “low functioning,” and some of us have been cycled through labels like some people cycle through hairstyles. We also have something meaningful and wonderful to offer you.

What neurodiversity offers you as a parent is the hope for a world where your child will be accepted on their own terms. Neurodiversity offers a chance to fight for what your child really needs, access and respect, as an autistic person. The neurodiversity movement values your child for their individual strengths and offers understanding for individual weaknesses. Believe it or not, we’re the ones really fighting for your child. We welcome NT allies and we hope you’ll join us in our fight.

We’re vehemently anti-cure (no autism, no me), but we’re not anti-progress. We know that every autistic person will develop differently, but we all develop. None of us are the same person at thirty that we were at five. Your child won’t be the same person at thirty as they are at five. And why would we, or they, be? Are you?

So welcome, I hope, to the neurodiversity community. I hope reading this has helped you calm your fears and prepare for your upcoming adventure.

LOUD. HANDS.

2012-01-18T21:49:00.000-08:00

Now it's my turn to tell you about this really awesome project spearheaded by Julia and ASAN.

So, I want you to watch this video:

You totally want to donate to this awesome project now, right? I know you do! So Here is the Loud Hands Project IndiGoGo page!.

Now I'm gunna tell you a little story.

Way back in the days of AOL being a viable ISP, I was a teenager on the autism spectrum. As I was learning more about the world, and more about the words that had been used to describe me & justify poor treatment, I found the internet. You can find a community about anything on the internet-even AOL.

I had been told my whole life that I was broken, just like the autistics in the Loud Hands Project video. I mean, seriously, I cried like a baby the first time I watched this, because...it is so true. They never stopped trying to fix me either.

But I came to the conclusion on my own, when I was about 15, that I am not broken. Am I different? Yep. Disabled? You bet. But that doesn't make me broken.

At age 16 I started posting on autism message boards. In all my teenage arrogance, I was sure that these other people-almost entirely parents-would be all happy to know me & delighted to know that I'm not broken.

No. No they were not. Not at all. Not even a little. It was harsh, being all alone with the conviction that my brain is beautiful, that who I am is who I am supposed to be, that I am not damaged goods. When you hear from all over that you aren't ok because of how you are wired, it's hard to keep connected to that fundamental truth: you are ok.

As a teenager I was fighting alone, and it's always been the kind of fight I can't win-the fight to be seen as a whole, complete human being exactly as I am.

But I'm not alone anymore. We are not alone anymore. We may not yet be winning, but I am no longer losing alone.

And we need the Loud Hands Project so that the next teenage autistic kid who comes to the conclusion that she isn't broken, that everyone else's perceptions of her are what is wrong, has a community. So that she knows that there are people out here who embrace her beautiful brain and her loud hands.

See? Told you you wanted to donate.

The IndieGoGo site is taking donations until the very end of March 15. We've already met the initial goal, which means the anthology-the book that hypothetical autistic kid up there can find & know she isn't alone-is a go. There are other plans for more funds, as spelled out on the Onward & Upward page on the Loud Hands Project tumblr.

If you wish to contribute writing, here are some sumbission guidelines!

Find LHP on Facebook and Twitter!

More nifty goodies, including a script for sharing LHP, blog badges, and updates can be found on the Loud Hands Project tumblr.

We need this. It is time for our hands to be loud.

Why I am not going to Portland Lindy Exchange

2012-01-12T07:46:00.000-08:00

I swing dance (lindy hop). I'm actually a pretty good dancer, if I listen to other people. And I enjoy dancing. So why the hell am I refusing to go to the biggest dance event in my own city?

Because they fucking refuse to even pretend to follow the ADA, that's why. Last year's was the absolute worst weekend of my life--and I have been abused & mistreated & sick in ways that mean I have had some fucking bad weekends, the kind of fucking bad weekends that most people cannot imagine. Bad enough that I am willing to name names and if people's feelings are hurt, they can climb a rope and let go, because 'hurt feelings' are not remotely in the same range.

I refuse to spend that kind of money to be in that kind of danger.

Last year, the Portland Lindy Society's lawyer called me & we had some discussions. She isn't an ADA lawyer, but since she had been to law school she knew what the ADA is and how to read a law (for those who don't know, the ADA is pretty fucking simple to understand anyway). The agreement was that they'd say no flash photography & that they'd have an event photographer who was supposed to be competent enough to not strobe all over & that he'd avoid me. I'm not exactly hard to pick out of a crowd, either; I wear blue glasses-NOT COMMON.

Let me tell you now about Portland Lindy Society's photographer. His name is Evrim Icoz. He is a sack of shit who should never work again. Ever. Hence the name dropping

This guy who knew damn well he was supposed to not use multiflash & was supposed to avoid the petite brunette in the blue glasses & Chun Li buns was always using multiflash within 8 feet of me at a rapid fire pace-not the exact opposite of what Ivy, the lawyer, promised at allllll. So, not knowing this man is an abusive sack of shit, I ask him to not flash in my vicinity, because it's like being stuck in a godsdamned strobelight and that's not acceptable, nor is it within the agreement Portland Lindy Society made with me. And he flashes his flash directly in my face because that's obviously what a professional does in this situation. You don't say "my bad", you don't go photograph somewhere else, you flash a strobe light right in the face of someone who has photosensitive epilepsy that you already knew about! Ethics & professional code say so!

So this guy, Evrim Icoz (seriously, I hope search engines grab this shit because it is not acceptable), he starts yelling at me. I'm kind of already about to seize, it is going to happen, & he follows me into the entryway while I'm looking for someone who has some power-a PLS person, the lawyer, someone. This guy is yelling at me that he doesn't know what the hell is wrong with me, I am a crazy bitch, he hopes I die in hell. You already know what's wrong with me, you sack of crap, and that is why you are supposed to change your behavior. Bet you feel like a big man now, yelling at a disabled woman to die in hell. Oh yeah. Such professional behavior.

If PLS were decent people, they'd have told Evrim he had to leave. Are they decent people? No. No they are not.

On the advice of their lawyer they gave my money back & 'allowed' me to stay. It's the least you can do when the event photographer sends you into a meltdown and a 5 seizure cluster, right? Please please please please don't sue us, Miss K. Here's your money! Keep your wristband! Just oh god oh god don't go to the media! I know our photographer is an abusive dangerous man, but please please please stay we'll be better!

Yeah. So fucking much better. Ask me about the next night!

The dance the next night was extremely crowded. Of course it was-it's a big dance event where the people who think they're hot shit from other dance places come to dance with the people who think they're hot shit from other other dance places, and we mere mortals if they don't realize we're mere mortals. Ok, that's unfair, some people from other places are delightful. Just not the ones who think they're Eris's gift to dancing. Anyway, not the point.

This Evrim guy is there again, strobing again! The lawyer and the powers that are at PLS assured me it was taken care of. They're liars. The guy is, again, suspiciously close to me with his deadly weapon at all times. Then he happens to be close to one of my friends, who ended up stuck with my seizure cluster (poor guy, stuck with all the seizure clusters that Portland dance people cause by refusing to make the simple ADA adjustment of banning flash photography. I'm whiny after a seizure & not exactly cooperative). Evrim decided this was a good time to, in the name of professionalism, shove my friend & try to start a physical fight. Not just any physical fight, but one in the middle of an extremely crowded dance floor. The bit where he told my friend to die in hell was an extra bit of acting like an adult paid to be there, in my opinion.

Then my friend tries, again, to talk to someone from PLS. I'm well on my way back to seizureville-the total for the weekend was over 30 as I recall-and this is unacceptable. The woman who he finds first (maybe not first. Maybe who he was told to talk to. I don't know. Most of my memories of that weekend are snapshot memories & waking up somewhere with a hangover-except I don't drink) decides that the appropriate reaction to having the professionalism of their photographer challenged is to start hyperventilating and saying she was convinced friend was going to hit her. That falls in the category of things I can never ever see happening. Anyway.

After this woman gets herself together, complete with guilt trip & me taking a few trips to Planet Not There, she does...nothing! She says she'll talk to him! She doesn't! He's paid to be there, you see! They can't do anything about him trying to start a physical fight on the dance floor or attacking a paying customer! Because she can't! Because not killing me isn't anywhere near as important as some fucking photographs!

We went and talked to the lawyer that night because of the profound unacceptability of this guy Evrim's actions and the complete denial of responsibility from Desha, the PLS representative. I have no recollection of this meeting; I was so far into seizureland that I just don't know. I seem to recall that the lawyer will no longer work with PLS but that may be faulty memory.

So I will not be spending any money on Portland Lindy Exchange, or indeed Portland Lindy Society, events again. They owe me one hell of an apology, as they have known for nearly a year. Assaulting someone with epilepsy with a strobing flash is not ok. Shoving someone on the dance floor is not ok. Verbally attacking people is not ok. Choosing to support the so called professional who does this rather than your paying customers-extremely not ok, unprofessional, and a great way to lose customers.

I will not pay money ever again to have my physical and emotional well-being put in danger. Portland Lindy Society willfully contributed to physical and emotional abuse of a loyal customer and that is not just unacceptable, it is illegal. I am disabled, I am not less, and I deserve better.

Background for the rageification: I've kind of had it with people being all "but ensuring accessibility is soooo haaaaaaaaaaard" when all they have to do is post a sign or turn their light to solid or whatever. Fuck you. I have to do this shit all day, every day, & so if you think me asking you to enforce a "no flash photography" rule for 3 hours is such a burden, go get a whaaaaamburger & cheese cries, because I do this every damn day & I don't get sympathy for it, I get abuse for daring to stand up for my rights.

More Toxic Lessons Learned

2012-01-07T12:33:00.000-08:00

A common theme of my youth was that I was worth less if I didn't have friends and a social life. Another prominent idea was that no matter what, if people didn't like me, it was my fault and my responsibility to change that. Having an opinion on what I'd like or not like to do or expressing discomfort with someone or something was being "bossy" or "too demanding" or "high maintenance", and none of these things are ok to be.

So I was this kid who was told that social approval defined my worth, and who was told that if I in any way challenged what my social peers decided to do I was screwing that up. Basically the message I got, both directly and indirectly, was that people were doing me a favor by tolerating my presence at all, so I should shut the hell up and be grateful and go along with whatever.

Ask me if I think my worth is determined by social approval and I'll say hell no, because it isn't and never was. If people don't like me is it my fault? Well, maybe, but that's their loss now isn't it?

But some of that toxic stuff internalized. I know in my head that people aren't doing me a favor hanging out with me, but that doesn't mean I really know it. I rarely feel comfortable asking for a plan change, and while I call out ableism frequently, I don't feel allowed to be as intense about it as I should if it's consistent and consistently minimized. If someone's behavior is unacceptable to me, I'm more likely to remove myself then request or demand a change, even if I know and like everyone else there. They may be my friends, but I "know" that I'm not allowed to be uncomfortable and ask to have that discomfort remedied, because I "know" they only put up with me as charity or something.

That is some messed up toxic shit, and I learned it from people who supposedly wanted the best for me. I'm an adult and I've been demanding to be seen as a whole, worthwhile, unbroken human being for nearly half my life, yet I still can't totally shake this crap. I know it's bullshit. I know I have the same right to express my needs in a social setting as everyone else.

But that knowing doesn't suck the poison out, now does it?

The Happy Family Meme, Holidays, & Why I Hate December.

2011-12-25T12:37:00.000-08:00

I'm pretty convinced the people who push all of these "-insert holiday here- is for families!" ideas have never read the news. Ever.

Newsflash for you people: Some people's families SUCK.

So you make all these days (mostly Christian-chosen holidays, which is a whole other issue) days that what you can do is be with those abusive assholes who you haven't seen since they told you to get a real job or die on the street when you were a teenager, or you can be alone hearing all about how Xmas is all wonderful and yay family who love you and are awesome no matter what.

And to that I say, fuck you.

There are all sorts of myths already about people who have shit-awful families. Didn't you know? It's my fault my parents are abusive. Obviously people from dysfunctional families are unable to love or care or whatever; never trust someone who has no contact with their family because no reason is good enough to justify that because family is family. Someone who has no contact with their family, even if their family is abusive and toxic, is all sorts of indescribable awful. That is the meme. We all are just spiteful and horrible because, don't'cha know, families always are there for each other and love each other. No exceptions.

And to that I say, go fuck yourself. If you want them so badly, you take them.

Then you throw holidays in there. Go spend time with your family, you say. All families love each other, holidays are for family, forgive/forget, I slap your face off and you're still going.

Because our culture refuses to admit that some people are related to shitstains, a holiday is a day where your only choices are:
a) go be abused
b) sit at home hearing how you should be with your family.

Because I don't feel bad enough already about being told I'm subhuman for avoiding those people, I also need to have no options for doing stuff today. It's like society at large is trying to bore & shame me into forgetting that I have parentally-induced dents in my skull.

And I know I am not the only person in this position. It isn't a moral failure to hate your family or hate holidays. You can't really have one without the other very easily, and if you really think it's a moral failure to not like having parentally induced dents in my skull & other PTSDy memories, go fuck yourself.

K

Doctor Season.

2011-12-22T14:12:00.000-08:00

For some reason all my specialist appointments (well, my 2 specialist appointments-epileptologist & endocrinologist) end up within a week of each other, consistently. Almost always.

Last time around, the epileptologist one went kind of like this. K is me, N is neurologist:

N: "So have you been having seizures?"
K: "Yes, especially when people flash lights in my face-because people are inconsiderate asshats, this happens a lot-or when I have to sit under a fluorescent light while the lecture slides are presented from a computer hooked up to a projector and they have a blazing white background!"
N: "And what do they feel like?"
K: *Insert 30 minutes of describing the spaciness that is an aura, the hell-if-I-know that is a partial complex seizure, and the wanting to die that is the postictal state here*
N: "So has anyone told you what they look like?"
K: "....yes. And here are phone pictures of me postictal as postictal gets. I don't remember taking them. Well, I remember the day after one. Seriously, I wanted to die."

And then she wanted to do all sorts of putting my meds into approved, ish, high ranges. OK fine whatever. Insert explanations of how all this can go wrong or right here. Exciting stuff.

Epileptologist this time:

N: "So have you been having seizures?"
K: "Only the triggered ones..."
N: "and how often is that?"
K: "Whenever entitled inconsiderate people decide the 'NO FLASH PHOTOGRAPHY' sign at swing dance doesn't apply to them & I can't chase them down and tell them they suck fast enough."
N: "...doesn't someone else do that?"
K: "NOPE! The person who is supposed to doesn't like making or enforcing rules. She was pissed enough about putting up the most passive sign in the history of the world. It has a smiley face FFS." (yep, I swear in the doc's office).
N: "That's unfortunate. How is school?"
K: "I got a 4.0 this term."
N: "What was your major again?"
K: "Biology/premed."
N: "Fantastic! So I don't think we need to do anything with your medication, but they do need to be more aggressive with that flash photography thing."
K: "...yeah, that's something that isn't going to happen. I'm taking the lack of enforcement as permission to be as nasty as possible about it."
N: "Oh those poor photographers. Have a great holiday & I'll see you in 6 months!"

Endocrinologist last time:

E: "It says you have adrenal insufficiency. Why do you have adrenal insufficiency?"
K: "No one knows. No tumor, no surgery, it's a mystery."
E: "We should find out. And change your steroid. And find out."
K: "I'm not opposed to changing my steroid, but I'm not sure any tests would show anything we don't already know...that I don't make ACTH."
E: "We should find out! *insert making plans for another ACTH stim test here. And wanting to look at my old MRIs, which are maybe 18 months old*
K: "I'll do it, but there's unlikely to be any mystery solved at all..."
E: "But you had an unexplained crash! That's unusual! We need to solve it!"
K: "Well, suing the school is stressful and I was probably sick and didn't notice. It wouldn't be the first time."
E: "We should at least look!"
K: "If you insist, Doctor House."
E: "What?"
K: "Nevermind."

And I did have the ACTH stim test and a draw of every hormone known to man and some that I'm pretty sure are just hypotheses at this point. The results were nearly identical to the first time I had one.

This visit:

E: "You switched your steroids? Is that going well?"
K: "Yep."
E: "You know the sick day rules?"
K: "Yep. And the surgery rules. And the vomit and injury rules"
E: "OK good. Your tests indicate that your ACTH release capacity is about 15% of normal & your adrenals function at about 50%"
K: "Alright."
E: "What do you do for work again?"
K: "I coach gymnastics..."
E: "Where?"
K: "NERDYNAME Gymnastics in TOWN"
E: "And what's a good age to start that?"
K: "...whenever someone has an interest...we have Mommy & Me through adults..."
E: "I'm asking because I'd like my daughter to have more activity & gymnastics isn't weather dependent. Do you have a website?"
K: 0.o *writes down information*
E: "We will check that out. See you in 9 months!"
K: 0.o 0.o 0.o all the way back to the lobby

Yeah. It's always exciting. And then there's new general practitioners.

GP: "It says here you have Ehlers-Danlos Syndrome."
K: "Sure do."
GP: "So what kind? Are your big joints or little joints more effected?" *looks waaaaay too excited*
K: "What used to be called type 2. I'm a 9/9 on the Beighton scale & am lucky to not have developed much pain, even though I dislocate easily."
GP: "And skin manifestations?" *Is seriously bouncing up and down."
K: " I'm covered in mystery bruis...oh, wait, you want to stretch my skin, don't you?" *hold out forearm* "Go for it."
GP: *looks embarrassed, then stretches my forearm skin & I think it made his week*

Yeah. Exciting.

Why I am So Hard On Allies

2011-12-06T23:11:00.000-08:00

I admit it. I'm hard on allies. I'm not apologetic about it.

When you say you want to support me-be my ally-you have said that you want to be part of a group that I want to trust. You're saying you wish to be part of a group that is working for things I devote much time and energy to. You are saying you want to be on my side.

And that's great.

But I have high expectations for teammates. Really high. If you are on my team, I'm holding you to nearly the standard I hold myself to, and my goal is strong loyalty. My goal is to get the job done. Not a little bit of the job-all of it. If there is something left to fix, I want to fix it, and I operate under the general assumption that other people see advocacy the same way.

High expectations and high standards are a sign that I think you're capable of earning that trust I mentioned higher up. I don't trust easily. Saying you're an ally doesn't make you one. But putting in the work-which is tedious and frustrating, believe me I know-that can make you an ally. But the allies who I trust? That trust is a sign that I think very highly of them, and I expect the world from people I think so well of. For what it's worth, I expect the world from myself too. I know it's not an easy standard to meet, but it's doable. Ish.

So if you're an ally, and you think I'm harder on you than you deserve (and you're actually doing stuff, not just spreading puzzle piece crap-that so doesn't make you an ally), consider this: it might be a compliment. I only expect the world from people who I think can deliver.

Since I couldn't livetweet it

2011-11-24T11:01:00.000-08:00

I had every intention of livetweeting as much as I could of my surgery yesterday (Laparoscopy, for endometriosis). Partly for the humor-I'm funny when drugged-and partly to help me remember things, since most people don't remember much before or after.

So I'm gunna put it here instead, so that I can remember what I remember.

My roommate's mom came & got me just before 8:00AM-8:30 check in, 10:00am surgery. They asked me a bunch of questions that I'd answered before, kept asking how I was (hungry, thirsty, & terrified), kept making sure I was the Neurodivergent K who's chart they had, stuff like that.

The gown was, like, recyclable. Seriously. It was purple and made of this paper/cotton mix. It plugged in & inflated these plastic bag things with hot air...it looked like I had absolutely comically GIGANTIC pecs. Unfortunately it sounded like a vacuum-I would have liked it warmer but it was so loud.

So after I got all gownified the official presurgical nurses came in to do my IV and make sure the incision site was as clean as could be & to take my necklace & bracelet from me. Noooo. The IV lady was really good...most people need a few tries, but it was in before I noticed. They were asking the same standard questions, I was answering the same way I always would (so, most people read me as a bit quirky or obnoxious), and they kept telling me I was adorable. Weird, but better than the people who are dealing with my anesthetized ass thinking I'm a jerk, right?

It took a long time for the anesthesiologist to come in. Like, a LONG TIME. Apparently my chart had walked away. But he told me exactly what they were going to give me & explained how they were going to prevent anesthesia awareness (a rare phenomenon that really really freaks me out). Telling me that it's rare isn't helpful, so are a lot of things that I've experienced, but telling me that even those rare cases mostly occur in emergency surgery when they can't fully anesthetize because blood pressure is already too low-that helped.

Then MY doctor came in & asked how I was. Terrified was apparently a healthy answer. I appreciated my anxiety not being written off-so often it's seen as silly. Also, she had on bright orange shoes, which is the silly kind of detail that I notice that makes things like "getting four holes punched in your abdomen & your innards cleaned off" a bit less intimidating. Weird? Yep. Yep I am.

Then they gave me Versed in an injection & everything got all fuzzy-the first thing to go is always my ability to focus my eyes together. The next thing I knew I was waking up in a room with a LOT of medical people & a lot of groggy people and I felt naked. First conscious word: Naked. Second conscious word: thirsty. Third conscious word: blanket. I took a fuzzy (and frankly offensive, it's covered in puzzle pieces but was made with loving intent, and my cat loves it) blanket & they gave that to me. And then ice chips. They told me to go back to sleep, but it was too noisy & bright.

I only vaguely remember being wheeled back to the room I started in, but I ended up there & kept asking for water & if I should have my noon meds. They wanted me to have a few more ice chips first. So I did. And then I drank. And drank more. And took my meds. And drank more. They left some crackers there, so I ate them. Mmm, club crackers...this nurse was kinda...uh...spacey, or else I was being very confusing, because nothing I asked got an answer without being asked again.

They made sure I could pee & then I got to go home. I was really out of it physically-like it was taking my brain a few steps to connect with my body-so I kept my eyes closed the whole time in the car.

And then the cat cuddled with me, I slept, and that was really that.

Boring blog post, yeah? Less boring, I guess: they took out several endometriosis implants & one of my ovaries had almost no mobility because of scar tissue or something attaching it too tightly to the pelvic cavity, so they're testing the shit out of that shit. So, I am not a whiny baby-there was stuff in there that causes pain. And it's gone now. Bahahaha.

So this is why I don't blog for other people much, or go to many conferences.

2011-11-04T10:05:00.000-07:00

Something I wrote here was reprinted on Thinking Person's Guide to Autism (with my permission, at their request). It was the story about C. You know, the C who had no reliable and honored means of communication and who was given no agency?

Apparently it was an anti-ABA screed, judging of his parents (and damn right I judge his parents. I'm not a hypocrite-everyone judges everyone. "Judging" does not mean "makes a negative assessment of someone and shares it". "Judging" is making any damn assessment, good, bad, or neutral, and keeping it to yourself or sharing or whatever, judgement already made.) We all do it, all the time, it's one of the things that makes us human, conceited because I was proud of what I had done (I don't understand what's wrong with that?), a bad example because I yelled at a woman who grabbed a child's body and made him do things he expressly indicated he did not want to do (because autistic kids don't deserve bodily agency? Forget that), and all kinds of other things I didn't say.

There are all kinds of controversial things I actually do say. If you must yell at me-and sometimes I think "terrorize the autistic" is an international sport-then yell at me for something I actually said. Don't yell at me for "tone"-we have had that discussion before and I think it should be an offense punishable by being cut off from the internet for 3 weeks. If I am talking about a specific event, unless it is about you it is not about you. You probably aren't that important. If I say something about a specific person, place, thing, or idea, I'm dead certain it's true. I have a painfully good situational memory and good pattern recognition-things that are honed to, you know, predict when people are going to slam your head into a wall.

I avoid contact with people who do these kinds of things because I've already had enough of it. I know where to find my mother (dents in the skull for all!). Speaking of skull dents, I know where to find the sack of shit who put me in the hospital with adrenal crisis, brain swelling so bad I couldn't stop throwing up and couldn't see. I know where to find the sorts of other people's parents who stab me in the arm-and yes it happened and go fuck yourself if you are going to tell me that I probably deserved it. No one deserves to be stabbed in the arm by a stranger or even someone they know, even if they are committing the huge crime of being autistic and adult at the same time. I know where to find the sharks. But I am tired of being forced to swim with them.

Autistics Speaking Day: For the People Who Speak With Me

2011-10-31T19:47:00.000-07:00

This is sort of about allies, but not exactly.

This Autistics Speaking Day, I want to give a shout-out to the people who stand with me while I speak. The word ally works, ish, but that's not their primary role in my world.

They're my friends.

A lot of allies have that ally mentality, where they have chosen a just cause to do right in the world. And good for them-we need people who see the concept and are like "yeah, I'm all for that concept!" and spread the meme. People who speak truth to power in a general sense are a good thing.

But that's not the same thing.

A friend, at least a friend of mine, they have a choice. They'll have to probably make it pretty early in knowing me, because there's a lot of anti autistic and other ableist bigotry that I see every day, & I point it out (and this is why I am always SO. DAMN. TIRED). I see it, I call it, and then they have a choice:

They can minimize, justify, otherwise derail.

Or they can choose to be a decent human being.

As soon as someone starts saying "it isn't that bad" or "you're too sensitive", they have chosen to not be my friend. The ones who choose to be my friend, they consider things and come to a conclusion that ableism or anti autistic bigotry or strobing a light in my face or whatever isn't ok.

And they stand with me. Not like in the abstract "making things uncomfortable for disabled people isn't ok" way (and seriously, keep doing that), but in a bigger way.

In a "that is wrong and unacceptable and don't ever do it again and fuck you straight to hell for doing that shit to my friend" kind of way.

People can be attached to an idea. People are downright fierce about their attachments to people.

And for friends-at least the kind of friends I have-it is personal. Doing something bigoted isn't throwing some vague oppressive vibe into the air; doing something bigoted is directly hurting a real person with real characteristics besides being disabled. You aren't just shitting on "the disabled" when you do that, you aren't just excluding some vague potential people when you don't make things accessible-you are engaging in behavior that makes someone, a real someone, actually in someone's monkeysphere, uncomfortable or unsafe.

It's not really a 'thing' to speak for or on behalf of one's friends, so people doing stuff like leaving a persistently ableist pizza place for good isn't doing a deed for the disabled-it's "FUCK YOU! STOP HURTING MY FRIEND". There's a difference. If someone talks to an ally about how to, say, make people like me understand that they are just concerned about my safety in a rock climbing class, the instinctual response isn't necessarily going to be a condescending "she's right there. Tell her". It's just a different mindset.

So yeah. You want to be a fucking amazing ally? Don't become my ally. Don't work on behalf of me and my community. Become my friend and channel your inner fierce loyalty. It does way more good in my day to day life.

Besides, I am freaking awesome.

(oh, and my friends are pretty ok too).

Advocacy: Everyone Can Do It.

2011-10-27T11:49:00.000-07:00

This story happened a long, long time ago, almost 10 years now. It's still exactly what I think of when people tell me about their kid who will "never" self advocate.

I worked for a few years with a boy who we will call C. C was about 9 when I met him. He was nonverbal, really hated typing on the computer, knew a few signs, and had a PECS book. He had experienced many years of ABA therapy, which is very much therapist directed, and he was growing increasingly frustrated with how things in his life were going. His frustration was pretty clear-he was angry a lot of the time and he was lashing out physically when a lot of demands (or unpleasant demands) were made. His PECS book often didn't have what he wanted to communicate in it, so that added further to his communication challenges. What he was left with was behavior as communication.

I'm pretty sure C's parents weren't exactly looking for self-advocacy teaching, at least not what I do. They had the whole "autism as tragedy" thing going on, were into quackery, kind of seemed to resent C for existing (ok, so very much resented C for existing) and wanted compliance and normalcy, not what I was offering. But C and I hit it off right away & I wasn't completely horrified by his expression of his anger. I avoided getting hit, obviously, but I wasn't going to restrain him or, nearly as bad, throw more and more demands in his face when he was upset. That's silly. It does not work. Typicality is not a realistic goal, but being able to express wants and needs is, and it was quite likely that C could learn a more expedient way to make his wishes known.

When I started working with C, I had a rule for his ABA therapists and parents: if C made clear a want or a need, he gets it. If he indicates that he doesn't want to do same with same or whatever, he doesn't do same with same. If he indicates that he is not ready to leave an activity, he doesn't have to leave yet. He needed to learn that he has some agency after so many years of following other people's agendas.

What's the first thing little kids tend to learn to take power over their lives in small ways? The word "no", right? I wanted C to learn that he could ask for things and get them, and that he could say he didn't want to do things and get that. A lot of our time was spent playing and him indicating he wanted or didn't want things, and me putting into words "No, don't take your block? Alright!" or whatever when he indicated in any way that he didn't like what I was about to do or did like or want something. Showing him that adults do take his wishes into account.

Then I took C swimming one day. This was something his ABA therapists didn't like to do very much because apparently it's a battle to get him out of the pool, he liked swimming in the deep end even though he wasn't an awesome swimmer & keeping him in the shallow end could be meltdown inducing-he could swim, but needed an adult right there. Not a battle I wanted to fight, but I'm not a fan of the Adult As God paradigm. I liked swimming and I liked C, so it was a good time.

We did some laps, we (well, C) splashed around in the shallow end, and 15 minutes before we actually had to leave I asked C if he was ready to get out.

"NO!"

Clear as day, emphatic, and with feeling.

Yeah, we didn't get out of the pool for another 10 minutes. C indicated no, he was enjoying himself, he did not want to leave. And he did it in a way that no one could deny-no is an important concept in making one's needs known, and everyone knows what it means.

He used the word NO a whole lot-they made him do a lot of inane things (touch nose? Really???) and he didn't want to. I don't blame him; touch nose is not exactly a meaningful activity. He started indicating preferred activities & even started helping make a schedule of stuff he'd do during his sessions (or what toys we'd play with & such...interactive toys for demonstrating "I don't want to" or "don't do that" are pretty great).

Then he stopped & started biting again. Being bitten hurts. Biting wasn't getting him what he wanted. "What. Did. You. DO?" was my question to the ABA people.

"Oh, he didn't want to do (some meaningless task) and I hand over handed it."

"...what the hell is wrong with you?" (insert about 15 minutes of full volume yelling about how it was his body and he had a right to not be touched and he had a right to determine his activities, and she owed him one hell of an apology, and he was going to get that apology. Where C could hear it. And where C's parents could hear it, because they were in the same county).

She thought I was kidding. I wasn't. She quit shortly after-apparently apologizing to a just turned 10 year old was beneath her, or to an autistic kid, or being told to by an autistic adult, I dunno.

And C started saying NO! again. Then we started fixing his book & set up a dynavox, but that's a whole other story....

Just Don't Use That Word.

2011-10-24T19:53:00.000-07:00

Two stories, both from this week, both illustrating how far we need to go in terms of the general public acknowledging that developmentally disabled adults out in public are, like, a thing:

Friday I went rock climbing. The facility has started charging an obscene amount for equipment rental, so my friend and I hit the discount outdoor supply (yeah, this city is so awesome that we have one of those). The guys in the climbing section were awesome-they even found a harness to fit me (I'm in a weird 'tweener size range). They were great, especially given that it was towards closing time on Friday and they were suddenly confronted with several people who all had drastically different needs.

So anyway, even though I was dropping a substantial chunk of change, I was pretty pleased. Then we go to check out & the chick at the register calls her machine r*tarded. Really? Really?! I could feel my climbing buddy wince from 10 feet away.

Don't use that word. It's ableist and unacceptable and hurtful. Oh! but it doesn't mean that! she says. It means slowed down and the meaning has changed and she grew up with foster kids and "worked with those people" and endless stream of justification.

Yeah, no, lady. And developmentally disabled people may be dropping $120 in your store right now and may be very much reconsidering that choice. The correct protocol is to apologize and STFU. And if you call me hun again I am going to slap your face off. The only thing that kept me from walking out was the knowledge that the shoes alone usually run around $200.

Then there was Sunday. As I've blogged about before, I swing dance. I have made some very good friends dancing, and it partially fills a gymnastics-shaped hole in my life. Anyway...

This very nice guy who's been dancing forever brought his nephew or cousin or something (younger male relative, in his earlyish 20s I'd guess). The kid kind of rubs me the wrong way, but whatever, right? There are lots of decent people with whom I just don't mesh, personality-wise. So this dude comes out to Denny's with us after the dance. We played this ridiculous game, Quelf the Card Game-as opposed to Quelf the board game-which involves doing silly, silly things.

Dudeguy pulls a card and says "I won't do this. It's r*t*rd*d." Don't say that word. It's bigoted. "Can I say 't*rd*d?" Well, not if you don't want me to think you're a bigot. Don't spew that hate in front of me.

Insert his not knowing what ableism is here (it's like sexism or racism, except against people with disabilities!). Insert "but I didn't know anyone here is disabled" as a justification here (because it's totes OK if no one is there to be offended, amirite?). Yeah, dude, I'm autistileptic. Nope, your claim of "borderline autism" doesn't impress me-you're still 100% ableist asshat and there's nothing that will justify that.

The guy asked if I'd be offended if he carved "fuck your god" into his arm. Non sequitur much? At this point other people are telling him to just stop, and one friend pointed out that I'm an atheist, if he was going for shock value with that one. I really don't care, it's his arm, though I do wonder what the purpose of doing that would be.

Then we get more word vomit of the R word & "well I don't know what other word to use!" Um. Bullshit. There are lots of other words and after you call me an fing r I have no reason to educate you-you are not worth my time after that. The guy just won't stop with the offensive and my friend tells him he is no longer welcome at our table-I was ready to leave at that point, but apparently I wasn't the one being an asshat?

This guy then goes around with the card that he insists playing would make him look like...well, that word (as though there is no worse fate than the late night crowd at Denny's wondering about you!) and he asks the waiter and all the stoners and other assorted riffraff that frequent Denny's at 1 AM for an adjective that describes the action on the card (please note that I absolutely without reservation consider my group part of that riffraff as well).

He. Asked. The. Waiter. To. Justify. His. Ableist. Hate. Speech.

The waiter was having none of it, fortunately, so this guy just stood at the side of our table for an hour while everyone ignored him. And on his way out he made sure to be vaguely threatening while using the same word about 10 times in one sentence.

But still. Hate speech. He fought that hard for his "right" to use hate speech.

My friends are awesome and wonderful, I must point out. There are so many similar situations where being not-ok with that word is somehow embarrassing or something, and they were pretty solidly "just stop, dude", which is just a symptom of their amazingness.

But this isn't the kind of thing that should happen at all.

In both these situations, people felt they were entitled to use words that the communities they are used against have explicitly said they disapprove of. And then when I, a member of said group, said "that isn't cool" (and according to witnesses, in the kind of way that isn't even offensive, since argument from tone is so damn popular), they felt they had a right to argue their right to use That Word, even though they'd never dream of using similar slurs, because they somehow have the right.

No.

It is not ok to use my people-yep, we're all stuck with each other-as your insult. And you sure as hell have no right to try to argue that because you know a disabled person or don't know that someone is a disabled person it's ok. Your bullshit, it is not flying here.

For the billionth time: I DON'T HATE PARENTS

2011-10-22T14:45:00.000-07:00

Well, not as a general rule. I make exceptions obviously, but someone kind of has to earn my ire.

Some absolutely wonderful people I know are parents (obviously. I work with kids). Some of them are even parents of autistic kids. Some parents of autistic kids have been nothing but lovely to me. I count some of these people as friends, even-a much more exclusive group than "people who are pretty alright".

If you are a parent & feeling like I hate you because I call you on something that's a problem-NT centering, for example, or calling yourself the autistic community when you aren't autistic, or for accidental use of silencing tactics or whatever-that does not mean I hate you! If I hate you, I'll probably say so, in so many words.

It is not an attack on all parents when I speak the ugly truth that many, many parents are horrible. Don't tell me that doesn't happen. It does. Been there, done that, paid the therapy bills. Don't tell me that parents don't center themselves in discussions on disability. A lot do. Many probably don't mean to. The ones who persist in doing so are irritating. That doesn't mean I hate them, unless they're really egregiously obnoxious about it.

I am not demonizing parents as a group pretty much ever. Those of you who think so really need to get over yourselves. If you feel 'demonized' by someone with a disability calling out problematic behavior, then maybe you need to look at yourself and why you feel hurt, especially if you insist you aren't Like That. If you are so deeply hurt by hearing about specific things that specific shitty parents have done, dig deep inside yourself and figure out why that is. Is it a knee-jerk feel-offended-because-someone-didn't-glorify-parents-of-disabled-kids? That's a personal problem that you may need to work on. Is it an I-feel-bad-because-I-empathize-with-these-shitheads? That's a different kind of personal problem. But it isn't me demonizing parents (I keep using that word because it keeps getting thrown around and I don't really know what the users are using it to mean, except "making out to be a demon") when I give specific examples of parenting choices that are shitawful.

But I don't hate parents! I hate certain things some parents do! I hate parents who are horrible people. That isn't unreasonable! I hate when parents tell me I need to shut up because of whatever stupid reasons! Also not unreasonable. And I think it's fair that I hate the dad who decided that stabbing an autistic teenager in the arm because of...whatever reason he gave, something about his wife and crying...was a good idea. Don't tell me that's unreasonable either!

So, if you think I hate you because you engage in any of those things, I don't, probably. But I sure think they're shitty things to do. If you want to know if I hate you, specifically, you can ask instead of assuming.

But I probably don't. I just won't hide what I think to make people less uncomfortable.

Both of these things are GABA!

2011-10-20T21:45:00.001-07:00

The molecule? That's gamma amino-butyric acid, as represented with a molecular model kit (and yes, I know that gamma is a Greek letter. I don't have a Greek font).

That cat? Her name is GABA. She's very mellow & relaxing to be around.

"Just be NIIIICE": Argument from tone is BS

2011-10-14T22:07:00.000-07:00

Let's say you're talking about social justice with someone of an oppressed class (and, for sake of argument, in that particular arena you have privilege). They're saying things you don't want to hear, uncomfortable things that hurt your feelings or make you feel bad. And let's say this person is saying what they mean, rather than sugarcoating it or apologizing.

You turn to the guaranteed conversation stopper: Argument from Tone. "You don't have to say it that way!"

Yes. Yes I do.

It's incredibly arrogant to dictate to someone how they say say things. Most of what gets brought up in these sort of discussions is difficult, it's real and it is raw. And we get told by privileged people all the time that what we have to say does not count because we are not them.

In autism discussions, this already huge problem is worse. Not only is it privilege abuse, but to tell people who are often neurologically incapable of tact and sugar coating that they have to say something 'nicely' or you won't listen to them, that is why it's so obvious that many allistic people want disabled children to talk and disabled adults to shut up.

It is utter ableist crap to say "talk like an allistic, and then we might listen to you." See, we can't talk like allistics. We have a disability that involves social and language differences! Can no one see the problem with demanding that people who tend to have language problems and social differences carefully phrase their language (which can be a battle to put together in the first place) with feelings in mind more than content?

Tone doesn't change what people are saying or why they are saying it. Those extra words, that padding, isn't going to change truth, it's just going to make privileged people feel less guilty. It isn't always about the comfort of privileged people, and it's never about feelings.

If someone is engaging with you about these issues, they probably think you have potential. Then if you pull argument from tone (by the way, it only seems to run one way. If I tell you that what you do is hurtful, no one gives 2 shits), well, there's more of our time wasted. And if you are going to insist it's my responsibility to educate you about autistic culture, don't fucking dare bringing my 'tone' into it.

In fact, just leave tone out of it altogether. Listen for content, not warm fuzzies.

Geek Girl Con Reflections: The good, the bad, the WTF

2011-10-11T11:43:00.000-07:00

I went to Geek Girl Con this weekend, and it was all sorts of amazing. It was a creep free con, which pretty much doesn't happen, and most of the panels were actually relevant to my life as a geeky, social-justicey woman. It was pretty freaking fabulous.

As I continue to review, keep in mind that we fans are toughest on the things we love. Think of it as having high expectations-I expect the world of things and people who should be able to achieve that.

Let's start with the good (mostly. I get kind of tangental):

-CREEP FREE WEEKEND. Thank you, that is all that needs saying, except it isn't. At other cons I'm afraid to cosplay, what with objectification and the sheer creepness of people who are threatened by a nerd girl or whatever their issue is. I didn't feel objectified or leered at even a little. Awesome.

-Oh my gosh, I could have spent SO much money in the vendor's hall. If you've never seen Surlyramics, you are missing out. There was so much geekery I couldn't entirely handle it.

-It was more diverse racially than pretty much every con I've ever been to. It was still predominantly white, but there were a lot of women (and men, for that matter) of color there, which I find extremely cool.

-Speaking of Teh Menz, there were way more than I expected. That's kind of awesome, because it means that there are, in fact, men who are interested in going to a con that explores a lot of feminist themes.

-HISTORY OF THE UNIVERSE AS EXPLAINED BY WONDERWOMAN. THANK YOU, THAT IS ALL.

-The Women in Science and the Skepchick panels were made of amazing. Oh my gosh, I am such a freaking fangirl. Bitch Magazine had a few people there too, so...well, I'm a fangirl, I guess.

-There were so many families there with their kids. And this is really very cool-it's fantastic for the little geeklets to meet each other (and they were oh so cute-all these little kids in costumes, including a Dr Horrible who couldn't have been more than 7). It was also really rad that GGC made a decided effort to be accessible to parents.

-Speaking of kids, an elementary school student asked how to start getting into science now. Right on! And a young girl-I'd estimate age 8-10ish-corrected an adult on the Women of Harry Potter panel about Professor McGonnagal standing up FOR, not AGAINST, Professor Snape. Yeah, that's right, be certain in your knowledge. It's important for kids to challenge adults, I think.

The Bad:

-I got lost repeatedly. There wasn't enough signage for those of us who are directionally impaired.

-I bought a pair of kitty ears from a vendor. They fell apart before I ever got home. I am disappoint. They were super cute, but clearly the antithesis of, y'know, actually functional, even as a decoration.

-As a woman with a disability, I felt pretty damn under-represented on panels and such. If any of the panelists were neurodivergent, they passed pretty well. If there were presenters with any disabilities at all, I didn't see or hear of it. There were probably other under-representation issues as well.

-Some views expressed by a couple panelists were...problematic. This isn't GGC's fault even a little, but I was still kind of shocked to hear a panelist say "well, that's normal and a happy ending and Harry needed a happy ending" when a woman asked what the panel thought about the extraordinarily heterosexist and family makin' ending of the HP series. Also on that panel, stating that "no one deserves that, but if anyone does, it's [Umbridge}" when someone asked how the panel felt about Umbridge being thrown to the centaurs. Yeah, that one almost fell under WTF. Another one actually does.

The WTF:

-I was in the bathroom and a woman who used a wheel chair told off someone who was using the chair-accomodating stall as a changing booth. That's right, make sure she knows. That's awesome. Less awesome? Brain-breakingly awesome? Said chair user had strobey shit on her wheels. Um. Uh. What?

-The Big Problem that nearly ruined Saturday for me: Geek Girls in Popular Culture panel. I was so excited about this panel. It consisted of 4 women and one man, Javier Grillo-Marxuach. Apparently he's done a lot of important work on Lost and The Middleman and Charmed and other shows I've never watched. Whatever. I don't care.
What I care about is that in an unfortunately not-shocking display of privilege abuse and cluelessness, this guy totally dominated a panel about geek girl characters at a con that was supposed to be woman-centric. Fun Fact: INDIANA JONES IS NOT A GEEK GIRL. HE CANNOT BE YOUR FAVORITE GEEK GIRL CHARACTER. IT IS NOT POSSIBLE. If you're going to dominate the damn conversation and talk over the female panelists (including 2 who seemed quite introverted) at least listen to and answer the actual question. Talking about your work on whatever and bringing it back to teh menz is not, in fact, feminist. Even if you can use the word "problematic" correctly in a social justice context, you can, in fact, still be problematic! A transcript color coded to see who said how much on that panel would be interesting, I think.

Overall I freaking loved Geek Girl Con. I will be back. I expect that as GGC grows, it will get better in addition to bigger. I can't wait to see what next year brings.

Geek Girl Con!

2011-10-07T14:31:00.000-07:00

I'm actually on a train to Seattle for Geek Girl Con right now. I'm excited because
a) geekery? Duh?
b) they actually have a harrassment policy
c) um hello? NERDS EVERYWHERE

Is anyone else from the autismnet going? I'll be there as Faith from Mirror's Edge the first day, and Chun Li the second day (though Chun Li may, like, put on some pants later. Seattle is cold & damp) & it may be fun to meet up with intertrons people.

It'll be interesting to see how this goes; it's the first one.

Some things shift. Some don't.

2011-10-03T23:20:00.000-07:00

This is coming from my personal experience writing for TPGA's dialogue series. This is extraordinarily, probably obnoxiously, me-centering rather than autistic community centering. It's not taking posts about the dialogues on other blogs into account even a little. Those other reflections may come later. They may not.

The post I wrote for TPGA is easily the most emotionally taxing thing I have ever written. There are a lot of uncomfortable associations with what I wrote about, and with the stories I decided to not tell yet as well.

I wrote that post with the full expectation that I'd be yelled at, accused of being unempathetic, have my words or meaning misinterpreted and misrepresented, told that I was "lucky" for whyever (because I could get into a Y? I don't know). That's my default assumption when I write, especially when I write for a mostly allistic audience, and even more especially when I am sharing uncomfortable truths. That's frequently what happens-I get yelled at a lot.

Mostly, my self-protective cynicism wasn't necessary, at least not in regards to my post and reactions to it. This is kind of overwhelming really-I'm not totally sure how to handle people being so nice to me. Don't stop or anything; it's a wonderful kind of unsettling to have people say they've got my back. I just don't really know how to deal with it.

A number of lovely people are encouraging a bit of a shift in my cynicism & knee-jerk wariness of autism community people who aren't autistic community people. It's a small shift for now, but what has to be a few hundred people didn't yell at me. I wrote something uncomfortable and difficult and no one yelled at me. This shouldn't be a big thing, but it is. A touch of the tarnish on humanity's reputation with me was wiped away, just a little.

But don't think for a second this means that I am going to change what I write about or how I write it. I know that I say a lot of difficult, uncomfortable things. I know the frustration from being an autistic in an allistic land and the frustration from living some truly hellish times shows. It's still going to. People are going to find things uncomfortable, but you know what?

It needs saying. Discomfort leads to growth. And barring specific triggers (which I do try to put warnings for), you can probably handle it. Many autistic people have dealt with similar things and said similar things to what I have experienced and what I have said. They know it is the way of things, for better or (usually) worse. Allistic people? You need to-yes, need to-know not just the "heartwarming" or "inspiring" or the nonthreateningly insightful or the sanitized autibiography stuff. You need to know the awful, uncomfortable things too. Those things need to be acknowledged to be abolished.

You acknowledged the ugly side of my truths, allistic allies and potential allies. You acknowledged that they're both ugly and truth. I make you uncomfortable not to be mean, but to create a more beautiful truth in the future.

On The Dialogues & The Accompanying TwitterGate

2011-09-24T22:48:00.000-07:00

I know, the disclaimer is getting old. Oh, also, please read to the end. I'm really trying to explain where I am coming from & provide ample context, not to attack anyone.

If you don't know what the title is referencing, The Thinking Person's Guide to Autism hosted/is still hosting at the time of this posting a series that will hopefully turn into a dialogue between autistic people & parent advocates (and plans are, autistic parent advocates).

And there was this Twitter conversation between Emily, who is an editor of TPGA, and Robert Rummel-Hudson, who was the allistic parent involved.

And then the internet exploded, because how it reads is "do not listen to autistic people, you do not have to."

What Emily was actually saying, in her own words, is posted here on her personal blog.

That doesn't mean, though, that it didn't read to a whole lot of us as "you do not have to listen to those autistic people". That does not mean it wasn't taken as "you do not have to listen to those autistic people" by someone or many someones.

See, that's the default most people take: not listening to autistic people. That's kind of what started this whole thing, isn't it? Not considering disabled people in disability matters? The whole false dichotomy of either parents or disabled people have voices that count?

When you are autistic or otherwise disabled, you know every day that people aren't listening to you, and certainly aren't trying to understand you. They are often coming up with reasons to not have to listen to you. We've been over all this before-silencing tactics, Not Like My Child, Argument from Tone, Parenting Is Hard, etc. It's significant. There aren't enough squares in a Bingo card, and it stops being funny when you get a blackout on 3 different cards in under 5 minutes anyway.

And I expect variants on "I don't have to listen to you! You can tie your shoes/you're a girl/you're a Scorpio/whatever" from a whole lot of people. It's a pattern.

But I don't expect anything that looks like that from people who I respect, people who I considered to be, you know, kind of on my side? And I respect Emily immensely. This post wouldn't be happening if I didn't respect Emily immensely. Based on her blog she has done a lot for her sons that I wish my parents had been willing and able to do for me. None of this is intended as attacky towards Emily.

Reading the Twitter feed, we have no context for what is going through the minds of the people tweeting. Read alongside the thought process post, the conversation makes a lot of sense and isn't particularly offensive. Other people are talking about neutrality issues, but I really don't give a poo about that-I like to assume if an autistic poster was similarly hesitant, someone from TPGA would be supportive of them, too, so that's reasonable to my eyes.

But what we see without that background information? It's kind of like that game kids do? "Open your mouth, close your eyes, in will come a big surprise!" and you're expecting something delicious because it's someone you trust, only instead of something delicious they give you a vinegar soaked cotton ball. That other kid over there may always stick vinegar soaked cotton balls in people's mouths, but this person usually sticks to fine chocolate! What just happened?!

I suspect if it wasn't everywhere that autistic people are to be neither seen nor heard nor understood, no one would have even noticed. I think that's where I was going with this. Unfortunately the dynamics of advocacy being what they are, & the inability to infuse relevant information to interpretation, probably made this whole Twitter thing bigger and more awful than it ever needed to be.

"Dialogue", Disillusionment, Disheartening

2011-09-23T18:14:00.000-07:00

The syntax of this post brought to you by Vicodin/Flexeril/the pain that those are supposed to be covering but aren't. If I don't make sense, I'll fix it later. Or not. But this matters too much to just wait until I feel better & have a good communication day.

As I said on twitter, I am frustrated by the exchange on Thinking Person's Guide To Autism. The idea of this exchange, for anyone unfamiliar, was that 2 autistic advocates-Ari Ne'eman and Zoe (who's surname I am not comfortable publishing in case it's not Common Knowledge)-and a parent advocate-Robert Rummel-Hudson-were going to have a conversation and come to some mutual understanding or something. The background of this is that RRH wrote a post about some offensiveness in a movie trailer & that a parent or sibling of a person with targeted offensiveness might be offensive, Zoe wrote a post back that basically said "you're missing someone and here's why that's uncool" and the comments of both posts exploded the internet.

Having been around the autismsphere for kind of a long time, I wasn't sure how this'd go, but I do like to give people the benefit of the doubt; I assume that most people do the best they can and will evaluate things if they're presented with evidence that their way may be wrong. Yeah, I'm kind of an idealist. This contrasts pretty sharply with what I've experienced, but you know one parent of a disabled kid, you know one parent, right? Maybe the ones who are hostile are a vocal minority?

I encourage everyone to go read those posts right now. I'll still be here.

I think Zoe was the epitome of class in both of her posts. I really do. She is doing something very difficult very publicly. She is explaining some very rough concepts, concepts people get defensive about, and she is doing it for an audience that appears to mostly speak NT. Her 2nd letter was very good as well, possibly more difficult to write-what it was a response to was pretty infuriating to read-and clear and consistent. I'm a fan.

Ari is Ari. He covered a lot of the ground Zoe did, but differently, & he brings a lot of background in the kind of advocacy that people see into things. And of course the issue of parent-advocates making assumptions on what people can do because of their point of view (which is a logical fallacy that needs a name if it doesn't have one. Or maybe an internet law: As a conversation between disabled people and parents of disabled children progresses, the likelyhood of the adults involved's abilities being grotesquely exaggerated by a parent is directly proportional to the unpopularity of their opinion with said parents). A lot of the bigger picture issues were brought up, and, like Zoe, Ari was very classy in the presentation of his points.

So to recap what I've talked about so far:

Two autistic adults are posting on a blog that appears to be mostly parentcentric and secondarily professionalcentric. We're tertiary, right? Those two autistic adults are having an extension of a conversation in which there were many swings and misses and disconnects about whose voice should be heard about disability.

Said autistic adults are being a level of tactful that is neurologically impossible for some of us (and I applaud them for it). They are actually reading what is being said to them & appear to be considering other view points. And they are doing this knowing that there is this big power imbalance here, because there always is in this sort of thing-nondisabled privilege is a very real thing.

And oh my oh my is that privilege on flaming display!

I do not doubt one bit that RRH loves his daughter and that he wants the best for her. I do not doubt that 99% of parents love their children and want what is best for them.

I doubt strongly that RRH listened even a little to anything Zoe said. To paraphrase a comment, his first letter is like someone read several posts on how to shut down advocates and used it as a template. People always ask us what we mean, dismissiveness? Right there. The "Not Like My Child" and "Too High Functioning to Be Listened To"? Right there. Egregious assumptions about what people can do based on their ability to write coherently? Right there. Misunderstanding and misuse of the word privilege? Oh yeah.

It was appalling. It is inappropriate, ALWAYS, to say that someone with a disability isn't disabled enough to have a valid opinion. It is inappropriate, always, to have a "dialogue" without responding to what you are supposedly responding to. The first letter was an essay on why Zoe has no right to advocate! And that's unacceptable.

The second letter was not any better. It may have been worse. I mean, I guess I'm glad that RRH admitted that he thinks it's right that parents have the major voice in advocacy, but not because I agree-because then I know I'm not reading stuff in. Kind of like I appreciate RRH suggesting that disabled people are basically tools for parents to use in their quest to help their children-I have known without a doubt that people think like that. Very few admit it, but there it is in black and white.

We are not tools. We're often accused of using other people as tools, but I see quite the opposite going on here. Advocacy for a child belongs to the parent, but advocacy for the disability community belongs to the disability community. I love allies with all my soul. Anyone who says it's appropriate for allies to have more voice is not my ally.

The comments have been very interesting. I daresay they're more productive than the 'dialogue'. There have been some visitors who already get it. There are some who may never get it. But it looks like in the comment section, actual exchange of ideas is happening.

Twitter has been a nightmare, apparently. I'm not involved in any of the conversations, I would just like to register that based on screenshots I've seen, some people I used to think get it clearly don't. You aren't our ally if you tell people they don't need to try to understand us-especially if you are loudly demanding that we "have to understand" your point of view as a parent.

Overall I find the whole thing very disheartening. There was a genuine attempt at outreach from autistic people. There has been so much smacking down and hypocrisy. The upside is now I have a nice condensed example of exactly what I am talking about when I talk about the dismissal of advocates and abuse of the power differential that parents & professionals engage in whenever we do our thing.

That isn't what I want though. I want more. I wanted to be shown that my defensiveness around parent-advocates is generally unnecessary. I wanted the power differential to be addressed. I wanted an acknowledgement that disabled people are the primary stakeholders in discussions about disability. I wanted to be shown that parent-advocates, like disabled-advocates, are doing the best they can, that they will try to understand, that they can and will listen.

What I got was: Parents want disabled kids to talk and disabled adults to shut up. I hate being right so often.

Crabbier Than Usual

2011-09-22T11:25:00.000-07:00

This has very little to do with autism or advocacy at all, but the whole blogomania thing (and associated crabbiness) does have a reason.

It even has a reason beyond "people are shitheads, the patriarchy are shitheads, and the tragedy model of disability pisses me off!"

I was in a car accident Friday. It was low speed, no one is going to die, I was the only person hurt as far as I know.

BUT

I hurt like hell. I have no idea how I jacked up my back so much, but it hurts worse than a lot of gymnastics injuries I have had. Not being ready for the impact and jerking around probably is involved, I have no idea. Whatever.

Pain isn't my cup of tea. Vicodin tends to make me a bit cranky. Flexeril doesn't do wonders for my processing. And being bored off my ass because I can't do anything physical just makes all that worse. Oh, and being told that they're sure it's nothing because I can touch my toes? Yeah, not sure how to feel about that because I have Ehlers-Danlos Syndrome so of course I can touch my damn toes! and it's hurt since Friday and hurts worse and I'm a whiney baby. And I'm not even going there with the ER report, oh god.

But--we can expect more wangsty posts at least?

They taught me to not opine.

2011-09-21T12:44:00.000-07:00

One of the main goals of autism 'treatment' is passivity. Unfortunately, they succeed at that. A lot.

Those of you who know me are laughing your asses off right now, because "passive" isn't the adjective most people think of when they think of me. But none of you know what it is to be inside my head.

They taught me that having an opinion is wrong. They taught me that wanting a say in what happens is wrong. They taught me that what I think and feel is far less valid than what anyone else thinks, feels, and wants. They taught me that standing my ground is among the worst things I can do.

And I internalized that.

I know, none of you believe me, because if there's anything I am known for it is standing my ground. But keep in mind-I don't give 2 shits what most people think, especially internet people. If I do give 2 shits what someone thinks on the internet, chances are good we are on the same side. We are fighting through the same things. And the stuff I stand my ground on, that I fight for with the whole of my being, it's often a literal matter of life and death-if not my life, someone's, somewhere. And that's worth it.

But what you aren't seeing is the panic and freeze. Every time I am asked for an opinion or a quick decision, even one that doesn't matter-often especially one that doesn't matter-my mind shuts down and starts racing at the same time. Do they actually want my opinion or are they checking to see that I have the right one? What if my opinion is the wrong one? Oh god. It's easier to not have an opinion. I don't have time to figure out the motive of asking and what my opinion is or how to say it in a palatable way. I'm not good at palatable ways, not even for innocuous things.

The way I do advocacy is the only way I can. Brute forcing through the panic, because those beliefs are more important than the very real fear of very real, terrifying consequences. It isn't easy. At all. It's like having to face a rational fear that developed into a phobia every day. But I have to allocate that energy-it's worth it for matters of life and death. It's worth it when other people like me are affected too. It's worth it when the listener doesn't immediately particularly matter to me (sorry. That's how it is) or they can't do anything to me.

But that kind of energy, on everything? I can't do it. The fear is too much.

Fuck yeah, passivity training. Hope you're happy.

A disclaimer I am no longer making.

2011-09-20T22:35:00.000-07:00

Every time an autistic person says anything, ever, we have to append a big disclaimer. The "This only applies to me and my situation and I know nothing about your autistic child/cousin/sibling/indentured servant so take it with a grain of salt". It possibly has to have a functioning label attached too, depending on how much what we're saying pisses off the listeners.

Yeah. I'm not making that disclaimer anymore.

Obviously I speak from my experience. I have no other experiences from which to speak. I know stuff my peers say, and I can incorporate that into a more detailed response, but that doesn't change that my experience is mine & that is where I am speaking from. Functioning labels are a steaming pile & only useful when allistics want autistic people to shush, so I'm committing myself more fully to abandoning them, too.

No one else is expected to make a disclaimer like that when talking their own lived experience (please correct me if I'm wrong; I've never had to append such a thing to any statement I've made about being a woman or biracial, but that doesn't mean no one has). But the Just My Situation disclaimer is yet another tool used to silence what we say, & I am not going to condone that action by helping bring it to be.

Just like everyone else, I talk from what I know. I speak honestly from what I know. The palatability of what I say has nothing to do with its global applicability, & it is disingenuous to make such a get out of guilt free card for people who may be doing or condoning things that are really awful by making that kind of loophole available.

So, since that whole thing should be understood-that K knows what K knows-I'm not saying it every time I talk anymore. My goal in speaking isn't to make people feel bad about themselves, or good about themselves either. It's to say what I feel needs saying. If it's useful in a way that makes you feel good, fabulous. If it makes you feel bad, look at why it makes you feel bad. Then take what utility you can from that.

The disclaimer get out of guilt free card is now offline.

In Which the Term "Self Advocate" Irritates the Shit Out of Me

2011-09-20T11:12:00.000-07:00

I don't like the term "self advocate" as it's used right now. The "self" should be a given, it should be understood. I should be a disability rights advocate, an autism advocate, an accessibility advocate, a neurodivergence advocate. Stuff like that.

I'm not, though, in commonly used language. In commonly used language, those terms-especially autism advocate-are about parents and professionals. Most of these people are not autistic. It's fair to say the majority of them have no disability whatsoever. So why the hell is it my description that gets a qualifying appendage? Why am I not the default in the work I do?

That's really what it comes down to, isn't it? Allistic, enabled people are considered the default for anything and everything, so when someone like me-autistic, disabled-does something on my own behalf like every other adult in the world it's seen as so damn special and cutesy that they decide they need another word for it. A word, I may add, that implies that what I have to say is not as important as what "real" advocates have to say. I'm just talking about myself, you see. They're doing the really real work, for we need the great allistic savior! We're cast as sidekicks in our own movement.

That, obviously, is wrong.

It is my movement. The accurate term for people like me (and a lot of people whose work I admire, and who I can't list here without it running 2 pages and me forgetting someone and feeling like an asshat) shouldn't be self advocate. We should be called advocates. Those people who are co-opting my movement? You know, the ones calling themselves advocates while telling us that what we say is less than what we say for a whole number of reasons? They can be allies, if they wish to work with us. Or they can be parent-advocates.

But the term advocate in this context should belong to us. We shouldn't be peripheral to the movement. It is ours. Give it back to us.

Existential Guilt.

2011-09-18T16:12:00.000-07:00

This is a world that would rather I weren't in it. That's a thing I and many like me fight every day-the pervasive feeling of being reviled and unwanted, infringing on everyone else's wish for a normal, uncomplicated little life where everyone and everything makes sense.

I try to not let it bother me too much, but sometimes it does. Like right now. Right now I feel as guilty for existing and subjecting other people to me as I imagine people who accidentally run over their children's pets in the driveway do.

There's just a lot of stuff that pours into that, you know? There's this ever present narrative that people with brains like mine don't deserve to exist. There's the deficit model of pretty much everything. There's all the everything about how hard it is to know or like or love or be friends with or consider human someone of my neurotype.

Then I go climbing, or try to, and they won't change the music to something that isn't seizuregenic. Hell, they don't even understand why I asked, or why when they made it out to be the HARDEST THING IN THE WORLD to change the Pandora station to "not electronic techno whatever the hell this is" I wanted my money back.

So it was a bad day and then we're in a car crash that was totally not my friend's fault in any way and it turns out my steroid injection is expired and no one at OHSU understands that even minor car accident + inadequate steroid cover = pretty big deal. And I sit in the ER waiting room in a cervical collar for 3 fucking hours, my pulse hovering between 46 and 52. And then they look at me and with my vitals in this whole BARELY ABOVE DEAD range and still argue about whether or not they should do more steroid cover.

Yeah, jackasses, someone with documented adrenal insufficiency is presenting in your ER after an injury (not a broken anything, but I TOLD YOU THAT MYSELF) with dizziness, low blood pressure, alarm-ringing-low pulse, nausea, etc and you decide to get in a power struggle about what to do about it? The only thing that would have made that better would have been if you'd offered me a medication I was allergic to.

Oh wait. You did. Because people like me aren't even worth the time it takes to review a chart.

So not only does society at large not want me to exist, but the people who are paid to see to it that I don't die are more concerned with being right than anything else.

And my back hurts. And I feel bad about my back hurting. How dare my back hurt, when I am so many other kinds of shitty to have to interact with any way? Who the hell do I think I am, to think that I'm allowed to feel bad and feel postictal and not want to die in the ER?

So you throw all that together, along with the knowledge that the failure of rock climbing + the car accident and subsequent ER visit totally fucked up my friend's day, and I feel like shit at the bottom of the ocean just for existing.

I keep seeing and hearing and being told that it's irrational and unacceptable for me to demand or ask for or even suggest that maybe something could kind of be not a big battle for me. But no. How dare I exist, how dare I think I'm human, even a little? Who the fuck am I to have needs and wants and try to get them taken care of?

So yeah. I feel inordinately irrationally guilty just for existing. Hope the autism tragedy complex is pleased.

Time for me to learn to cook

2011-09-13T13:18:00.000-07:00

I don't cook. Too many steps, right? You have to collect all the ingredients and get them ready and put them together and then keep your eye on the time and then clean up and then finally you get to eat, assuming you haven't collapsed at the overwhelm from all the steps, right?

Well, uh, cooking is cheaper than not cooking. So I'm going to try-again-to learn to make food that's not macaroni & cheese or a peanut butter sandwich or cheese melted on cold cuts (shush. It's good. They're like cheap h'ors d'ouvre).

If anyone has recipes that aren't too complicated that they'd be willing to share, please pass them along! I've got high protein and calorie needs, so I do eat meat (except shrimp. Deadly allergy is deadly). Right now mac & cheese is my complicatedness limit...more steps than that and I tend to get a bit overwhelmed. And I have kitchen anxiety the way a lot of people have test anxiety (that's a story for another time)...but I have way more anxiety about collapsing from not eating enough. So yeah.

If anyone who has the magic power of cooking can share, pleasepleaseplease!

'Overcoming' Is Not a Moral Obligation

2011-09-03T15:26:00.000-07:00

When you are disabled, there are a couple things that are expected:
a) people will say you can't do something
b) people will push you to do that thing anyway

And if people can and want to do the things they "can't" do, good for them. I support people's rights to push their perceived limits.

What I don't support is pressure to push any and every limit intrinsically or extrinsically imposed. Given everything else that we do (like having to fight for our right to be seen as human), developing a knee jerk reaction of "watch me!" when someone says that we can't do something is just asking for long term burn out.

Sometimes they're wrong, and we can do that. Sometimes we just can't, and that's ok. Sometimes we kind of can, but the energy trade off just isn't worth it.

Society demands that we keep overcoming, overcoming, overcoming. But we don't have to. Nowhere is it written that to be a really real human you have to brute force your way through your limits. Nowhere is it written that not doing so makes you less worthy. For most people, constantly refusing to acknowledge that you have limits is seen as a problem. We all have limits & we are supposed to acknowledge them, know where they are, work within them.

But when you have a disability, it's like everyone expects you to push past your limits all the time. They want to be inspired, or they want to not have to deal with the fact that a disability means "there are things I cannot and will never be able to do", even as they expect me to know there are things I can do that they will never be able to.

So we are pushed to keep 'overcoming', and if we can't we are failures and lazy. But if we can, we aren't really disabled. It's a no win either way. Our choices are be burned out or be looked down on even more, be told we aren't disabled because we can do xyz or because we can't.

Feh. That is all.

"Wouldn't your life be easier if you didn't identify as autistic?"

2011-08-25T20:08:00.001-07:00

I've heard that question a lot lately. Well, enough to justify thinking & writing about it. It sounds like a simple question, but when you think about it, there's a lot of complicated nuance involved.

Yes, my life would be easier if I didn't identify as autistic. No, my life would not be easier if I didn't identify as autistic.

People have a great deal of prejudice about autism & other developmental disabilities. I've been bullied out of activities and classes because I am autistic; I've been discouraged from even trying others. People and professionals who are 'familiar' with autism but unfamiliar with me assume that I am less capable of many things than I am-usually in a patronizing & insulting way. It is often assumed that I cannot be good at some of my hobbies and simultaneously assumed that I have some sort of magic autistic savant skill. That part of being autistic really sucks-having to prove my humanity & my individuality over and over and over and over again is exhausting.

The thing is, I don't really pass. I shouldn't have to, either, but even if I wanted to, I just don't. There are things about who I am that scream DIFFERENT. People probably don't peg me as autistic right away-they aren't used to thinking of autistic and adult in the same sentence-but they know damn well I am not of their tribe. Abberation is a crime whether there's a name for it or not.

Distancing myself from the term 'autism' doesn't mitigate the problems (or strengths) that got me the label in the first place. I am going to be labeled in some way whether I let my neurodiversity freak flag fly or hide it in the back of my junk drawer. Being oversensitive, undersensitive, unaware, overaware, strange, belligerent, overly predictable, unpredictable-all of these things are unsafe to be, regardless of diagnosis or lack thereof.

The fact of the matter is, I am autistic. If I didn't identify as such, I would be doing myself (and I like to think the autistic community as well) a huge disservice. It's who I am, easy or not. Owning who I am is a big part of getting other people to accept that I and people like me are really real human beings rather than damaged goods. If it's something that is so bad that I cannot acknowledge that it's part of me, why should I expect people to treat me and mine as equal? The short term convenience of possibly almost passing just isn't worth the long term consequences to me and my autistic peers.

Call it what you will-my brain is autistic and my experience is autistic. It isn't the easiest identity or neurology to live with, but it is mine.

I think the answer just came out to "no, it wouldn't be easier. It'd just be hard in different ways".

To the Girl in Missouri Who Was Attacked At School

2011-08-19T09:32:00.000-07:00

**possible trigger warning.**

Hey there,

I don't know your name (and because of how hateful people are, I am quite glad that who you are hasn't made the media-you've had enough awful stuff from people for at least 2 lifetimes), but I do know we have a few things in common:
-We're both women/girls/otherwise female
-We're both disabled
-We've both been maltreated
-We've both had people with power fail us miserably

There are some things that you probably aren't hearing enough of.

It wasn't your fault. Nothing you could possibly have done warranted rape, or being forced to apologize to a rapist, or being assaulted, or being expelled, or being raped again. Nothing. Nothing. Nothing.

You did the right thing. The right thing is really hard to do, because women are too often deemed responsible for bad shit that happens to us, and disabled people are too frequently viewed as not real people. That is a load of crap-you have every right to expect to be treated right. Reporting may have been the most difficult thing you'll ever do, the fallout has sure sucked, but it was the right thing. Even if you didn't know how brave it was at the time, it was courageous. Not just because you are a kid and have a disability, but because it takes a strong person to stand up for herself.

A large number of the adults in your life utterly failed you. There is no excuse, none at all. It seems like your mom is fighting pretty hard for you, but that the people at your school are fighting back, and that's disgusting really. There is nothing you did to deserve how they are handling this. Nothing, nothing, nothing. In your place I'd feel that there was nothing the school could do to make it better, but that doesn't mean they shouldn't try.

There are a lot of people out here who are outraged by your treatment. We are on your side. Some of us are women, some of us are rape survivors, some of us have disabilities, and some of us are just people who are horrified and outraged by what you've been put through. You have allies, even if you don't know us and we don't know you. WE ARE ON YOUR SIDE, and we are hoping that you get justice, and we are hoping that you are ok. We are hoping that you get what you need to thrive as you continue growing up.

In support and solidarity,

Neurodivergent K

We Aren't Here to be Your "Resource"

2011-08-17T13:42:00.000-07:00

And it's fucking insulting when people say we are.

Autistic adults are not here to explain to NT parents what autism is like. Shocking, right? We are not a 'resource'. We are human beings. We have our own interests and lives and opinions and experiences.

Suggesting or acting as though our only value is in explaining autism to people who know an autistic person is displaying a shocking lack of empathy. All the literature used to say that autistic people used other people as tools. They said this apparently without irony, as that characteristic is way more descriptive of "translate my child" parents then it is of any autistic person I know.

Seriously. How is it even ok to act like 'letting' us tell you what it's like to be us, or what it was like to be us 10 years ago, is something we owe you? We don't owe you anything. It is arrogant and ableist to act like because you tolerate our existence, we owe you all the 'insight' you ask for.

Bonus points, by the way, for parents who want our 'insight' but otherwise want us to shut the hell up. If you want to know what I think about something-and I feel up to telling you-you're going to get exactly what I think about that something. We don't exist to make you feel better about how you think about or treat your autistic kid, either.

You aren't doing us any favors demanding we tell you about our neurology or insisting that we agree that your choices for your child are wonderful-we are doing you a favor by indulging these questions if we choose to do so.

And Then I Land In the ER Again...

2011-08-15T02:53:00.000-07:00

I spent Saturday feeling kind of crappy, tired, low energy, even took a nap. I don't nap.

Then comes nighttime, when I got all nauseated (and promptly started eating antiemetics like candy) and lightheaded and dizzy and spaced out and fell over when I stood up.

"Fuck. Fuck this all to hell", I say.

See, I have adrenal insufficiency, and I was showing signs of adrenal crisis, which can be fatal. My pulse bottomed out at 38 or so when I was at the ER, so it's good that I went, but it sucks.

I can't forget, not even a little, that I have a marginalized brain. It's all around me. I don't understand people, they talk to me like I can't understand anything because of how I speak, the autism tragedy items are everywhere. Because of epilepsy, I am not allowed to drive, there are seizure-causing strobe lights on bikes and police cars and parking garages and a German restaurant (no, really, I have NO IDEA why either). The message comes through loud and clear: this world is not made for brains like mine, the world thinks brains like mine are inferior, and if my brain wants even a little consideration I am going to need to fight for it. Accessibility policies rarely address that brains like mine exist and need accommodations as well-there is no escaping that I have a marginalized brain, and I'm pretty used to that.

But I can forget I have a marginalized body. For the most part, it can do anything I ask it to do-I can dance, I can climb, I can do flips, I can navigate my environment with relative grace and ease. In my base state, I don't have a marginalized body at all. The world is set up for people with my physical abilities to do their thing efficiently.

But then I throw up, or I break a bone, or in the case of Saturday, a black cat crosses my path. Then I remember that my body isn't something I can use as nonchalantly as other people can use theirs. You can't tell, I go weeks at a time without being conscious of it at all, but this strong and coordinated body I inhabit is fragile indeed. When the shit hits the fan, it goes critical in a big way.

Since I don't think about it much-I take replacement steroid along with my anticonvulsants and I carry an emergency injection kit-the whole thing freaked me out. Generally speaking, adrenal insufficiency impacts the day to day running of my life not a bit. For me, at least, it is a rare and uncomplicated metabolic disease. Take pills every day, don't throw up, don't get significantly injured, all will be well.

Then it slapped me in the face out of nowhere and I remembered that it is a big thing. And the ER people made it pretty clear that they didn't find this sudden failure of homeostasis (which is basically what an adrenal crisis IS) to matter a whole lot-I got the steroid replacement about 3-4 hours after I told them that I felt like I do after I throw up, 2-3 hours after my pulse hit 38, hours and hours after I told them that it was all wrong.

And it wasn't cool at all. In terms of ER treatment, there was probably a bit of intersectionality-my chart says autism, so they didn't realize my inability to make even a little sense was, like, a thing. And I'm a woman, so of course if I am not actively being mauled by a bear it's not necessarily really a real thing. I heard that attitude before, actually, right when I was diagnosed with adrenal insufficiency-and then they saw that I'd been functioning on 1/4 normal cortisol levels and were revealed to be misogynist shitfaces.

If it had been out of nowhere seizures, I have adjusted to those being the occasional addition to my life, but no-precipitant adrenal crisis really scared me. I already restrict some of what I do because of seizures, I'm more cautious of going places alone then I'd like to be because of seizures and autism related communication issues--I was ok with AI being something I don't acknowledge much. After this one, though, I'm going to be wary for a while and it sucks!

New Project

2011-08-10T00:06:00.000-07:00

I have a new project, and if people wanna help, they are awesome and amazing.

Basically, a lot of stuff exists to help NT's cope with their autistic kid/employee/husband (why is it ALWAYS husbands? Anyway...).

But there's nothing on interneurology friendships. Nothing. Nada. This is a deficiency I wish to rectify.

So if you're an autistic person who has good things to say about nonautistic friends, and things to say on the making and maintaining of those connections, and you want to, message me in some way. Or leave a comment and we'll get a conversation going. If you're a neurotypical/nonautistic person who has or had good connections with autistic people, same.

Thank yooooou!

Body policing & erasure & such

2011-08-08T22:47:00.000-07:00

-Yes, I realize I have some thin privilege. That doesn't stop what specifically I am writing about from bothering me.-

There's no good way for me to start this. So I'm just going to start throwing words out there and it'll sort of maybe make sense.

One of the big slogans, for lack of a better word, that I've heard a lot of in reaction to the predominant unrealistic female body type seen in the media is "real women have curves!".

By that measure, I am not a real woman. That measure excludes many many women. Many athletic women aren't particularly curvy. Many trans women aren't particularly curvy. A lot of women of all sizes are, in fact, not particularly curvy. It's body policing to exclude even one of these groups of women from the category "real women". Those skinny models who it's fun to hate on? ALSO WOMEN.

This is something that has bothered me for a while, because, well, I am a woman and I have no curves. I wasn't going to say anything about it until a website that seeks to have photos of women of "all" body types came to my attention.

"All" body types includes:
-banana (straight up and down, shoulders and hips and waist all pretty much the same width).
-pear (wider hips than shoulders)
-apple (widest in the middle)
-hourglass (I'm gunna go on a limb and assume you know what that is)

According to their classification of "all" female body types, I don't have one. I'm much wider at the shoulders than the hips, & pretty much straight up and down from the armpits on down. There's no cute fruit name assigned to that. I know quite a few grown women who are shaped like me, and a lot of growing young women who are going to be shaped like me. As a teenager and young adult, some of the adults in my life joked that I was built like a very tiny man, but I was under the impression they were kidding.

So there's a whole visceral "well that sucks, yet another way women who happen to be me don't exist". But there's also the whole thing where body acceptance isn't a zero-sum game. Or shouldn't be.

We shouldn't police women for having the "wrong" shape or size in any direction. I wouldn't dream of saying something hateful about someone larger or rounder than me, but when in the name of empowerment someone (a real someone, not a strawwoman) yells at me to eat a fucking cheeseburger or calls me anorexic or pinches me somewhere not soft (pretty much anywhere) and proclaims that real women have curves...well, I don't see how that's empowering. Disempowering someone else isn't how empowerment works.

(and that isn't even getting into how being a disabled woman intersects with this, or how accusing someone of anorexia maliciously is ableist bullshit, or a lot of other things).

Does this exist?

2011-07-20T23:26:00.001-07:00

I'm an atheist. I have disabilities (I swear I've started a post that same way before).

Groups that are full of religion and prayer requests are extraordinarily uncomfortable for me. Yes, seizure exacerbations or sensory issues or GODICANNOTTALKTODAY are all shitty things. But 'praying for me' isn't going to do anything. I know it's a reflex for many people, I think for a lot of them it's kind of like "I will keep you in my thoughts", but that doesn't change that it's uncomfortable. I mean, thoughts and goodwill are nice and all, but overall they don't do anything. Neither does praying, but you can't say that without a lot of fallout.

I think what I want to find is a secular, truly secular, group for all disabilities or all neurodivergences or even one for epilepsy, one for autism. I'm talking nearly aggressively secular here. One where it's ok to say flat out that prayers aren't going to help the actual problem. One where I don't need to worry about being called satan's spawn because I disagree with something totally not even about religion (or if I do, for that matter. That's pretty much not ok).

And not just for me, though selfish motivations brought me down this train of thought. Lots of people are of minority religions. It's just as uncomfortable, I'm sure, for someone Pagan or Jewish or who follows Islam to listen to people beseeching Jesus on their behalf. Maybe it isn't. But if it is, then I want to see that lessen.

What do y'all think? Know of any? Know a way to make it work?

*and yes, I do know a number of people of many faiths who I love dearly. They probably know a number of atheists and followers of other religions who they love dearly.*

Well-Behaved Autists Rarely Make History: Why "Bad Autistics" Are Good Activists

2011-07-10T12:22:00.001-07:00

It's not difficult to figure out how to be a "good" autistic. Just preface everything you say with "this only applies to me, of course" or "I'm quite high-functioning, but," apologize for existing. A good autistic answers every question, no matter how invasive, that a neurotypical person asks. A good autistic is honored that parents give them the time of day, praises said parents regardless of how they treat their kid, never questions NT supremacy or authority.

I am a bad autistic.

Bad autistics demand to be treated as human. We are not afraid to call people out on treating us-or their children-poorly. We say that asking us intensely personal questions is inappropriate. We are not honored by being "allowed" to be universal translators or self-narrating zoo exhibits. We don't apologetically state our experiences, all wrapped in disclaimers that no other freak like us will necessarily experience the same thing the way we did. Many of us reject functioning labels entirely. We do not praise parents for not drowning us in childhood; we know that is not praiseworthy.

We want and demand more than that. We want more for ourselves. We want more for the "good autistics, who have stumbled on a way to be bullied less. We want more for the children of the very parents who vilify us. Where a good autie is told "I hope my child grows up to be like you," I am told "if my child could argue like you do, I'd consider them cured." This is not a compliment-it is a silencing tactic.

I and other uppity auties I know have received death threats. Our diagnoses are constantly questions; really real autistics are apparently unable to have our own opinions on autism. We are called delusional, we are told we are bitter, angry, too emotionally connected to the issue to be rational. Knives have been pulled on activists. We are told that there is no way we can actually like who we are. We are vilified and maligned constantly.

It's not easy. Most of us have PTSD from childhood bullying and abuse-parents have told me, incidentally, that abusing me was acceptable and understandable. And yet, we persist in fighting the good fight.

Why? Because it's important, that's why. No one should treat anyone that way. They do it because it is socially acceptable. I want better for me. I want better for their children. I'm idealistic enough to think that they probably want better for their children. I want a world where "good autistics" are not afraid to contradict a parent. I want a world where my humanity is a given, not something I have to fight for. I want a world where people who bully and abuse people like me are seen as the monsters they are.

First they ignore you, then they laugh at you, then they fight you, then you win. I'm a bad autistic and I intend to win.

Parents of autistic kids are bullies.

2011-06-25T02:24:00.000-07:00

Not all of them, obviously. But a disturbing percentage.

They say something I disagree with? Waaaaah, I'm not empathizing with the difficulty they have as a parent. Don't I know how horrible it is to parent a kid "who happens to be diagnosed with" autism?

Oh, Neurodivergent K, you say your parents were abusive? Don't you know how much they suffered? They probably just couldn't cope! What do you mean that is a thoroughly offensive and disgusting thing to say? Don't you have any empathy for your parents? I'm sure they didn't wake up and say "so how do I traumatize my kid today?". God, you autistics just don't understand us poor brave struggling parent-warriors.

You disagree with this and find it repugnant? Why are you so angry??!?!? Life hands you lemons, make lemonade! (fuck that, incidentally. Life hands you lemons, chuck them back as hard as you can. When they bounce off, set them on fire and do it again.) Anger doesn't accomplish anything! OMG INFIGHTING! You say you're an adult so act like one! Stop having a tantrum!

Yeah, people actually talk to me this way. Parents of autistic kids-often the same ones who presume to ask me about my bowel movements and menstruation-cannot handle an autistic person disagreeing with them.

And that's when they bully. They come in a herd. They condescend. They misread what you say. They assume emotions that I am not necessarily feeling. They assume that anger is a "bad" emotion, one undeserved. They decide that doing exactly what they do is 'tantrumming', because of course autistic people have no right to expect to be treated as adults. It's all that schoolyard crap, again and again.

And they wonder why I worry for their children. How the hell are they going to advocate for their children when they are bullying someone who has the same neurotype as their kids?!?

I hope to hell that no one treats their kids the way they treat me. It isn't the children's fault their parents are grade-A asswipes. But still, grade-A asswipes.

If you are an autistic person, you know exactly what I am talking about. If you are a parent who thinks that talking to autistic people like that is acceptable, thinks that your view of autism matters more than what actual autistic people think, you just may be a grade-A asswipe. Cut that shit out.

Autistic Pride Day

2011-06-18T15:04:00.000-07:00

I'm hoping to get up a post tomorrow with some other people's reflections on APD. But for now:

Why do we have Autistic Pride Day? Why is autism something to be 'proud' of?

The way I see it, it's not so much "I am proud of this achievement" as "This is who I am and I am pretty effing fantastic and this aspect of me is part of why. I am pleased to be me."

Many minorities have pride days or pride events. And good for them. We are another minority. Just as people of color didn't choose to be born as minorities, just as GLTBQ people didn't choose to be different, just as no one chooses to be part of a group treated poorly--we didn't either. But just like those other groups, we are valid and whole individuals.

Pride in what makes you different is good for you. If you can be pleased about who you are, then there is no reason to fix you. People generally aren't broken, so I'm all for pride.

I can be the most amazing me I can be, or I can be a crappy imitation of someone neurotypical. Yeah, I'm proud to be the badass I am.

Streeeeessssssssssssssssssssssss

2011-05-24T00:50:00.000-07:00

Hell is other people. Hell is awareness without understanding. Instead of trying to convince me I am a horrible unempathetic (a load of shit, btw) half-human for not being willing to forgive truly shitty things and for not supporting the WAAAAH MY KID IS BROKEN pity party, let's talk about being an autistic adult in the world that this attitude has created.

Please!

Let's start with a school which shall remain nameless. A teacher who shall remain nameless, who was all for me taking his indoor climbing class, knowing I have epilepsy. Then the A-word comes up and he's all "cannot understand risk" and "would be better suited to a yoga class". Yeah no. I don't like yoga. I like high places and getting to use my muscles. I evaluate risk for a living, except without time to think about it. I WAS A HIGH LEVEL GYMNAST AND THIS IS A COMMUNITY COLLEGE CLIMBING CLASS. It is well within my capabilities thank you very fucking much.

Or let's talk about disability services at the school, who argument-from-tone'd me after not listening to me at all, just this teacher. Or the deans who suggested I don't belong in college at all because I am autistic. Citing my GPA would just be ridiculous, given that it's very high, so let's go with ILLEGAL DISABILITY DISCRIMINATION WOOHOO. Or all involved telling people all about my neurology without verbal permission, much less the written consent they legally need to get.

Or let's talk about the never ending "yes, your strobe on your camera is a strobe light too. Yes, it can cause seizures. Yes, it's a dick move to 'forget' to turn it off. Yes, I have as much right to be in public as anyone else" battle. Or let's talk about the event photographer who shoved my friend and aggressively multiflashed in my face, because he takes pictures for money and therefore the rule did not apply to him.

Or let's talk about the bikers who say they're willing to take the risk of MY having a seizure from their strobes because epileptic people don't drive, right? So who really cares?

Or let's talk about the fucker at a pizza place some friends and I go to regularly who said that if the (nonessential to the venue) music choice was a seizure causing problem, we can all just leave. We have thrown paper airplanes and cupcakes and done awful ballet and lindy hopped and built forts in this damn restaurant but OMG NOT TEH BRAIN DIFFERENCES NOOOOOOOOOOOO. Everyone else who goes there might catch it and that'd be a travesty!

Or we can talk about how nothing is ever easy because people make it hard when it doesn't have to be, and when I express frustration it's because who I am is apparently incomplete and not a really real person, but if my parents (who by the way are poor excuses for human beings) were to express frustration about me, or tried to use my neurotype as a reason for being poor excuses for human beings, would get loveyhugs and sympathy. Because they are real people. And I am not.

(there's all the regular stress too--finals, projects before finals, work, med changes, etc. Usually it's tolerable. Now? Not so much. THANKS, AWARENESS!)

I don't have autism. I am autistic.

2011-05-21T23:58:00.000-07:00

That's a thing I've been saying forfuckingever. And yet people keep insisting on pointedly saying that I and others "have autism", are "individuals who happen to have autism", are "living with autism", or the ever popular "are individuals who just happen to have autism".

Those are a lot of words just to deny a fundamental part of who I am, huh? It's like people think if they wedge enough words between their identifier noun and the word autism, they'll pry the condition off of us.

I know that y'all are taught person first language, and many communities prefer it and I support that. But the purpose of person-first language is to respect the person you are describing. Ask them what they prefer. I, and many MANY other autistic people, prefer to be called autistic, not "living with autism" or "having autism" or "an individual who happens to have an intimate neurological understanding from living with autism" or whatever.

It is profoundly disrespectful to insist upon person first language when the person or people you are describing do not wish to be described this way (Kathie Snow of Disability Is Natural, I am looking at you, among others). Part of respecting my agency is respecting how I wish to identify, even if you don't like it.

Since autism is like an operating system, you cannot separate it from who I am and how I work. Once you install Linux on your Windows machine (unless you are dual booting), it's not a computer that happens to be experiencing Ubuntu (or whatever). It's a Linux computer. It works differently than a Windows computer or a Mac, for example. It's not broken, it's different. As already discussed, you can't just go and change someone's operating system. It doesn't work.

Respect that. I am autistic. It's not a dirty word, I promise.

Cure is an inane concept.

2011-05-19T22:15:00.000-07:00

At least, it is when it comes to most of what I've got.

It means "restore health; recovery from disease". That assumes that we have a disease. It assumes that we are unhealthy. And, ok, there are a few labels I carry that could be seen that way. But my neurology isn't unhealthy or diseased. It's different.

But then people talk about 'finding a cure' and that is just such a simplistic idea. It sounds like they're expecting a compound to be discovered or developed that ennormalfies people. It doesn't work that way. The rainforest doesn't have a puzzle piece printed tree waiting for the leaves to be made into an autism-be-gone pill. It isn't that simple.

Something that would cure all the autistic people living right now doesn't exist. It cannot exist, not in the magic elixir form. Autism does not work that way. As much as I would love it to, neither does epilepsy.

"Curing" a neurodevelopmental condition would involve a series of risky and complicated procedures. There's a partial fix for some forms of epilepsy, and that's risky and complicated-they find the place where seizures originate, do a bunch of tests to map vital systems, and they remove the recalcitrant tissue. That's a complicated thing to do.

Autism would be more complicated. There's so much more directly effected in the brain. They'd have to rewire everything, then teach the ~~victims~~ patients how to use their own mind completely from scratch. Doing it all in one go would be more than a mind could handle, I think-can you imagine culture shock related to your own cognition? Because that's what you'd be dealing with. Totally changing someone like that could have quite the devastating consequences-depression, anxiety, suicidal behavior, whatever they call that feeling of alienation from yourself...

You can't just change someone's operating system and expect it to work. Autistic traits are part of the very fabric of our being, if you had these procedures and your ~~victim~~ patient survived, no one would recognize them. They'd be a stranger and an outsider in their own body.

This started out as being "THERE IS NO AUTISM BE GONE PILL IN THE FOREST" and kind of went on a tangent.

Being me can be difficult sometimes, but I know me. There's no guarantee that the hypothetical invader would be an easier person to be. Changing the entirety of who someone is cannot be ok. Ameliorate the difficulties, but don't try to do that by erasing all of us.

YAY ACTIVISM AND STUFF.

2011-05-16T09:59:00.001-07:00

I attend the walks for choice that started as a response to the right wing war on women. It's really really easy to be in support of free birth control, free STD testing,accessible abortion, and other reproductive health care in the liberal city I call home. We've never been counterdemonstrated (which would be hilarious, but I'm kind of strange..) and we've had exactly one invective yelled at us. People here are overwhelmingly in support of keeping Planned Parenthood funded, keeping abortion legal, making sure that the definition of rape doesn't get so stringent that most women aren't able to deal with the already stressful reporting process, basic stuff like that. They may not be willing to walk through town chanting about free testing for everyone, but they're all for it on the inside.

The thing is, though, that there are big intersectionality issues with anything feminist. Women are not all the same. There are women of all races, women of all sizes, cis women, trans women, rich women, poor women, neuroprivileged women, neurodivergent women, women with visible disabilities, women with no discernible disability.

That is a LOT of diversity to cover. And while I doubt we have it perfect, the organizers are doing their damnedest. And I approve. Many feminist kind of things, even those that try to be inclusive, engage in some kind of erasure, be it that of trans women, or of women of color, or mothers, or disabled women.

I'm sure there's a group no one thought of yet in our area because of the privilege that comes with not being in any given minority, but I don't know who that is, and that's kind of cool. I dread so much feminist activism because of the erasure, and I am not erased. I may be the only disabled person there (more likely I am not), but the existence of people like me, and the fact that people like me also need sexual health services, is acknowledged.

They even asked me to talk about the ableism that occurs in reproductive health services. That's kind of cool. So many people think that autistic people, disabled people, are asexual perpetual children, that my experiences being acknowledged by a mainstream feminist movement makes me warm and fuzzy inside.

Inclusiveness: because all of us matter. Go (my town's) walk for choice!

(yes I realize some people reading aren't pro choice. Some may even be anti contraception, which is a mindset that makes no sense to me for reasons I assume are obvious. I'd rather not have a bigass OMG BABYKILLER argument here, since the main idea of the post is YAY NOT BEING ERASED AND YAY EMBRACING DIVERSITY, not YAY ABORTIONS).

Information Retention & Processing

2011-05-11T12:02:00.000-07:00

So something I've caught a lot of crap about lately is that I don't retain everything I perceive. I have a phenomenal memory (as many of us do), but if something is presented in a way that's not very good for me, I don't move all of it from short term to long term memory. That's just the way it is.

However, what the people taking this to mean I cannot learn are not understanding is that I perceive far more than they do. I probably don't catch everything, but not much goes unnoticed. As I sit here now I am aware of the smoothie being made 25 feet away (it has bananas and berries), I am aware of 5 different conversations about 5 different things, I feel and hear the lights, including the one about to die 10 feet to my right, the butt groove in the chair I am sitting in, the crookedness of the table directly in front of me, the grinding of the coffee across the big open space, the smell of the daily special (I think it has sausage). When I go to the hospital or doctor I can remember the names of the nurses because they wear name tags. I notice what hand people prefer.

In other words, remembering even half of what I take in would be remembering more than many people indicate noticing at all. If I remembered absolutely everything I'd have more conflicting information than I can deal with-that threshold is already awfully close. Discarding some of those conflicting details is how I have cognitive capacity to learn new things rather than spending all my time justifying 2 opposite ideas as compatible.

So yeah. I learn just fine, thank you.

Tumblr People:

2011-05-06T12:38:00.000-07:00

I am thrilled and delighted that you are reblogging my stuff. Yay me yay you.

HOWEVER

When you comment on my writing, the only way for me to see it is to chase you all over the internets. This is inane. My stuff is getting like a billion comments on tumblr (other people's tumblrs, I don't have the bandwidth to have yet another blog) and here it gets very very few.

This bothers me. I like comments. I like conversation. It's all happening about me, without me. Not cool. And I shouldn't have to chase all over the intertrons to see what people think (and blogger doesn't do the linkbacks with tumblr so I wouldn't really know where to start even if I wanted to and had the time to).

Commenting here isn't hard, I promise. And I like seeing what other people have to say.

The Privilege of Ignorance

2011-05-03T13:22:00.000-07:00

Something people who talk about privilege don't talk about much:

Part of your majority privilege is the luxury of being ignorant.

I have heard so many times "I didn't know strobe lights were problematic". Really? REALLY?? I do not understand, what with the signs and warnings on things and the hurrhurrseizure jokes that people who wouldn't know a seizure if it bit them on the ass make. People who don't have epilepsy don't have to worry about it, even a little, so they make their inane jokes and gloss over the warnings and notifications. They don't realize how many lights are everywhere. A friend even said to me this week that he didn't realize how much flashy crap is everywhere until we started hanging out. Most people have the luxury of not giving a shit.

People are blissfully unaware of noises. They are blissfully unaware of smells. Oh so many people are blissfully unaware that their behavior and language marginalizes people. I had a dean at a college tell me she didn't know what erasing a person is while she was doing it. People have the privilege of not knowing the first thing about a person or group of people while simultaneously treating them as less-than. Many men are utterly unaware that being a woman is sometimes absolutely terrifying. People without disabilities are utterly unaware that being a disabled woman is even more so. They don't have to know.

I recognize there are things I have the privilege of ignorance about as well. I do not have to be aware of sidewalks and curb cuts and such, for I do not need a mobility aid. I know these things are problematic, but I don't have to think about them. There are a number of aspects of GLBTQ existence that I am unaware of because they aren't part of my every day life. I recognize that I am privileged in this way, that a lot of people do have to take a whole lot of other factors into mind, but that doesn't mean I know what they are.

In short, ignorance of other people's daily existence comes with privilege. It isn't someone's fault that they have that privilege, but it is their fault if they refuse to acknowledge it.

BADD 2011. The fights we fight

2011-04-30T21:09:00.000-07:00

I'm in the middle of 2 battles right now. 2 battles that should not need fighting.

One, I am a one woman anti strobe light league. People have them on the fronts of their bikes, and have told me that they are willing to take that risk because epileptic people cannot drive. It's not their call. Fighting to get flash photography banned at a place I go frequently-the red eye reducer is a strobe light just so you know-has taken the better part of a year and the start of a petition to DOJ. It also took me having 2 severe seizure clusters at the venue because of flash photography and a so called professional photographer aggressively strobing in my face and nearly hitting a friend of mine. Pictures are not more important than my health.

Then there's the restaurant with a strobe light outside, who told me that they aren't the only ones in town with a light and to get a life instead of telling them that they are hurting people. And there are the parking garages with strobe lights. There are the red lights and the school busses, all strobing. Because according to the real people out there, I DON'T MATTER.

I have been told that if strobe lights are dangerous to me I should stay in my house. They are fucking everywhere. NO. It is my world too.

Then there's a fight for access at school. I'm socially different, whoopie shit, and a teacher cannot handle that. It will eventually be covered in full here, but currently there are a lot of legal things going on and I don't think they go on the internet right now.

But this guy heard the word autism and suggested a yoga class and that I cannot evaluate risk because I am autistic. He has alternatingly ignored me and harrassed me for the whole term, because I am autistic. He has coerced the staff at the facility we use into harrassing me, because I am autistic.

He has bullied me via himself, the dean of the school, and disability services, because I am autistic. He is trying to bully me out of his class because I am autistic. Not because I am incapable, but because I am autistic.

The people who are supposed to be my advocates, Disability Services, are giving what he says more weight, because I am autistic. The dean is listening to him and talking down to me, because I am autistic. They are telling me again that who I am is enough reason to discriminate against me even though they have a policy against that. They are doing this, too, because I am autistic.

They will probably get away with it, because I am autistic.

They will fight for each other, but no one fights for us. I am tired of fighting, but I keep doing it because it's fight or die, and I am not dead yet.

Some reflections on Autism Miseducation Month

2011-04-30T20:43:00.000-07:00

(This was originally titled reflections on Autism Hysteria Month, but someone pointed out the origins of hysteria as a word and that's no good, so now we're on miseducation. -K)

Thank $DIETY it's over.

This month in the public sphere, we had atrocities like PBS's Autism Now (which ignored autistic adults entirely as not important; only parents matter). We had atrocities like the NHL's Face Off Against Autism. We had the ridiculous Light It Up Blue thing. Blue is totally going to make people more educated, right? Everything was against autism or for awareness.

Still people are settling for 'awareness'. But awareness is not an end unto itself, or shouldn't be. Big Autism is happy if people are 'aware' that their tragedified version autism exists-that brings donations for cure research. I hypothesize that Big Autism doesn't want people actually educated on autism, for then they may determine that supports, not cure, are what is needed and what is ethical to fund.

In my real life, awareness has done nothing but harm this year. STOP telling me I am broken. STOP telling me that I am an exception, I'm not. I am not special in the autistic world, not really. We are all unique and yet we all share so much.

In my real life, "awareness" is leading to a teacher trying to force me out of a class. I have a 4.0 GPA, am a former high level athlete, and he is afraid I cannot handle rock climbing, because of "awareness". The fight I am forced into because of "awareness" is not something I have the bandwidth for, yet here I am doing it. I will probably collapse from burnout before it is over, as I am running on fumes and stubbornness right now.

Awareness doesn't cut it in 2011. It won't cut it in 2012. Educate people or shut the hell up-awareness as your whole goal does not help us. It hurts us. And contrary to what you think, you are hurting really real people with the fallout from your scare tactics.

Being Autistic Is...

2011-04-17T13:26:00.000-07:00

In the style of What Epilepsy Is. Like that piece, this one is more about how other people react to autism than what autism itself causes. I'd think that'd be apparent, but one never knows.

Being autistic is being judged.
Being autistic is being yelled at for existing.
Being autistic is being subjected to verbal, physical and emotional abuse for existing.
Being autistic is being at high risk of being killed for existing.
Being autistic is knowing damn well that anyone who hurts or kills you will get away with it.
Being autistic is knowing that the person who hurts or kills you will be a folk hero.
Being autistic is being looked on as a tragedy.
Being autistic is teachers doing everything they can think of, legal and illegal, to make you not their problem.
Being autistic is people being scared of you.
Being autistic is people being scared of you when they haven't even met you.
Being autistic is being looked on as an emergency.
Being autistic is being told that your way of seeing the world is objectively wrong.
Being autistic is being told you have no empathy.
Being autistic is being told that by people who make no effort to see things your way.
Being autistic is being told that your very existence is a danger to you and to others.
Being autistic is being called a burden.
Being autistic is knowing you aren't going to get acceptable medical care.
Being autistic is being assumed incapable of having friends.
Being autistic is people talking to your friends instead of you.
Being autistic is people assuming you are incapable of understanding things.
Being autistic is people hoping you are incapable of understanding things so they can justify excluding you.
Being autistic is people excluding you anyway, because 'autism' is reason enough.
Being autistic is fearing for your job when people find out.
Being autistic is being erased-no one is like you in the media.
Being autistic is people disbelieving you are what you are because there are no autistic adults in the media.
Being autistic is having both your strengths and your weaknesses weaponized against you.
Being autistic is having to qualify everything you say as only applying to you.
Being autistic is doing exactly that, and still having people attack you for 'assuming you speak for [my] child."
Being autistic is doing exactly that and people still demanding you play universal translator.
Being autistic is those same people yelling at you when you tell them something they don't want to hear.
Being autistic is having very personal details of your life demanded of you.
Being autistic is being called 'tantrumming' when you don't answer said invasive questions.
Being autistic is giving 95-97% in every social interaction.
Being autistic is knowing that others resent giving even 3%.
Being autistic is every socialization problem being your fault, for you are the broken one.
Being autistic is knowing that the bullying you are subject to is socially sanctioned and celebrated.
Being autistic is knowing that your successes are resented.
Being autistic is charities that are supposed to help you trying to eliminate you.
Being autistic is being physically attacked at those charities' events for daring to show up.
Being autistic is being assumed to be the aggressor in those and any other situation.
Being autistic is having quack cures constantly shoved down your throat.
Being autistic is knowing that no one wants a child or friend like you.
Being autistic is knowing that if you point out how society treats you, people are going to challenge your anti cure status as disingenuous.
Being autistic is knowing that if you demand equal treatment, people will challenge your support needs.
Being autistic is knowing there is no way to win anything, ever.
Being autistic is fighting to be seen as an actual person.
Being autistic is knowing that fight will not be won in your lifetime.
Being autistic is fighting that fight anyway.

What to say, and not say, to an autistic adult

2011-04-16T00:55:00.000-07:00

I borrowed this concept from Stark Raving Mad Mommy. I assumed she wouldn't mind too much. Hers is way funnier than mine.

DON'T SAY: "I never would have known. You must be very high functioning."

SAY: "I obviously don't know anything about autism."

DON'T SAY: "Are you sure?"

SAY: "I obviously really don't know anything about autism."

DON'T SAY: "Isn't that, you know, a kid thing?"

SAY: "Damn, the media works hard to erase you. That sucks."

DON'T SAY: "Don't you get that from vaccines?"

SAY: "I almost just asked you a preposterous question. Clearly, I suck."

DON'T SAY: "You aren't like my 5 year old nephew! You aren't autistic!"

SAY: "The media has so effectively erased you that it didn't occur to me that you grow up. I suck."

DON'T SAY: "You are nothing like my child! You aren't really autistic!"

SAY: "I am bitter and angry and it isn't your fault, so I'm going over there."

DON'T SAY: "Isn't neurodiversity, like, an exclusive club for Aspies and high functioning autistics?"

SAY: "I may misunderstand neurodiversity. Care to explain?"

DON'T SAY: "If you can 'advocate' so much, you aren't really autistic."

SAY: "I'm glad people are fighting the good fight so my kid may not have to."

DON'T SAY: "If my kid could do what you do, I'd consider her recovered."

SAY: "I wonder what my child will be like as an adult."

DON'T SAY: "That parent is just frustrated, they don't mean to be hateful. Have some empathy!"

SAY: "Wow, that was really rude of them. Are you ok?"

DON'T SAY: "They aren't ableist, they just don't understand! The unfamiliar scares people!"

SAY: "What an ableist turdbucket. Ew."

DON'T SAY: "If everyone treats you like that, you're used to it, right? Business as usual."

SAY: "People suck. I understand why you're often angry and frustrated."

DON'T SAY: "Why do you hate parents?"

SAY: "That shit irritates me too."

DON'T SAY: "But not all parents are like that!"

SAY: If you're doing it right, you shouldn't have to say anything. It should be apparent.

DON'T SAY: "Oh my god that must be soooooooooo haaaaaaaaaaard."

SAY: "I just noticed how loud and bright it is in here. Can I fix that?"

DON'T SAY: "Look at me. LOOK at ME."

SAY: "Based on what I just almost said, I have a deathwish."

DON'T SAY: "Doesn't eating a food and deliciousness free diet fix that?"

SAY: "Pizza, burgers, or burritos?"

DON'T SAY: "That sound/light/smell/random touching wasn't that bad. Just relax."

SAY: "There's a quiet dark place over there. Do you want company or want to be alone?"

DON'T SAY: "Aren't you worried about passing that on to kids?"

SAY: Don't say anything. My hypothetical future kids are none of your damn business.

DON'T SAY: "What was your first period/bra/sexual encounter/significant other drama/accidental innuendo/intentional innuendo like for you?"

SAY: Again, keep your mouth shut. This is even less of your damn business.

DON'T SAY: "Your parents did a really great job! You're so high functioning!"

SAY: "You are pretty fantastic."

DON'T SAY: "Autism is such a tragedy. Don't you hope they cure it soon so you can be normal?"

SAY: "Eliminating you would be a tragedy."

"What Would Meeting You Halfway Be?"

2011-04-11T10:31:00.000-07:00

My friend asked me this after class with an "aware" teacher. And I was flabbergasted.

I have no answer to that question. I don't even have the shape of an answer, much less words, a description.

Meeting us halfway just isn't done. No one considers it as an option. It's a tidbit of ableism that is so entrenched that I never considered it; autistics do all the work is just how it is. We give 95%, everyone else complains about the 3% they grudgingly give & then they demand that we meet them halfway-because 97% is the new half.

It never occurred to me that they are fully capable of giving more. I don't know why, just that they don't. A communication problem must have at least 2 sides, yet "I have a communication disorder, so this is my problem" is the way it is. It's how it has always been. It's how things will continue to be for the forseeable future.

I still don't have an answer to my friend's query. I guess part of meeting me halfway would be ditching preconcieved notions that I can (or cannot) do something based on my skill-or lack thereof-in another area. Part is not assuming or using communication between the lines. Take stims as they are. Take me as I am-everything I do has a reason, but fretting about that odd thing I do isn't meeting me halfway; it is othering. Don't other me.

But really, I do not have an answer. I could not tell anyone how to meet me truly in the middle. I don't know what it feels like. If it's like my social experiences at conferences, it's both a freeing level of acceptance and something the NT majority will never achieve in my lifetime. It's not something they can or will do.

I don't know where halfway is, and I quite likely never will. There, I guess, is the answer.

More Consequences of Awareness

2011-04-09T22:52:00.000-07:00

Kay.
So I'm taking a rock climbing class at the local community college. One of my good friends is taking it with me (for fun, and because, well, having a seizure at the top of a climb would be pretty horrendous if no one knew what was going on).

A few things to note right now:
a) I'm pretty much left handed for athletic purposes.
b) It takes me a few tries to reverse something to work for my left hand-ESPECIALLY if I look at it forward on or from anywhere but right next to the demonstrator.
c) I start displaying imminent frustration before I really notice it, especially when the lights are bad (they were).
d) On me, that looks like sideways hand flapping, gettingallthewordsoutatonce, being a bit more "don't touch me".

I get services from the disability office at school. I am not required to tell my instructors what I have, but it's not like it's a big secret, and I don't want autisticy stuff to be assumed to be seizure activity or vice versa, so everyone knows. No big deal. Or it shouldn't be.

But! My rock climbing teacher! He's *aware*! So we're doing our thing in class, learning to belay after we learn to make the knot. All the staff and instructor types are right handed. Apparently I'm the only left handed person they've ever met. So they tell me 15 different ways to do things, most of which amount to "be right handed".

I'm a bit frustrated with this, but fine. Whatever. I can climb like woah. I manage to not drop my friend for whom I am belaying-I was clipped into a ground anchor because of a significant size differential, but he did not, in fact, die. I also did not die while climbing. Well done, us.

Then this minty staff lady comes over and tells me to do the opposite of what the instructor told me. Oh...kay...

None of these people have The One True Truth of belaying, obviously. All the things I did did, in fact, work. But being told 3 different things in 5 minutes (again, most of which amount to "be right handed") is a bit much. I'm still clipped in to the ground anchor, ready to go, my hands flap a little.

"Unclip."

"uh, what"

"Unclip. There seems to be negative energy and emotions.:

"...what"

Blah blah unsafe blah blah not concentrating blah blah frustrated.

"Well, you told me one thing and she told me another and it's what I was doing so I'm processing".

"Unclip & we can have a discussion"

"...I want a cognitive interpreter..."

Seriously, I had no idea what I did. None. The first thing that came up in the 'discussion' is that as an autistic person I just operate a bit differently, and oh man did the condescension turn on.

No, I do not need little words. No, I am not going to hurt you (WHAT is it with instructors asking me that this week? I'm 120 pounds. I am about as intimidating as a rabbit). My friend, who actually knows me, trusts me to not drop him. Please, keep your distance. Please, stop acting like having me here is a big fucking hassle. "are you sure you can...do this?" Why yes, yes I am. Crazy, but I'm in pretty good shape.

I do, in fact, learn even! I'm good with the distance keeping, honestly. I'm not so good with you talking to my friend (who was cognitive interpreting) like I'm a recalcitrant child, like I cannot hear you. I am not ok with the ableist language to my classmates and the assumption I wouldn't get it. Yeah, 'people like me' do in fact have recreational activities.

Oh, people like me are even adults! I don't care how well meaning your statements are, when they're talking points out of PSAs about children, I hate you. No, I won't fucking take a 'time out'. I will go get food. I will go for a walk. Anyone who thinks 'time out' is acceptable language to use with a grown woman is too far out of realityland for me to listen to, ever, but yes, I do in fact remove myself from situations.

Oh. The catalyst for his freak out? Flapping is BAD. No. Seriously. I thought he was saying it to cover for something even more ridiculous, friend said he was dead serious. Awareness tells him so!

Thanks, 'awareness'! I need to have my coping mechanisms demonized! It makes my whole damn day! I need to be treated like a kindergartener by a community college PE teacher! That made my whole week! And, shit! Having half my teachers afraid of me, THAT makes my whole year! Because we all know that all autistic people are Manchurian Candidates or something, just WAITING to completely lose their shit and destroy everything in our paths!

Except we aren't. If this is 'awareness', ignorance really is bliss.

Why I am ritually burning my favorite shirt.

2011-04-08T23:54:00.001-07:00

I have a shirt that I love. It fits me well. It says "Schrodinger's cat is dead" on the front, and I'm sure you can figure out what the back says.

I love this shirt probably more than any other article of clothing I've ever had (except maybe the Bambi dress I had from ages 7-9 or so). It looks good, it feels good, I get compliments when I wear it.

So why am I burning it?

Autism Speaks, that's why.

They have cornered the market on getting donations. It sucks. It's unethical, given their fund distribution structure. It's even more unethical, given that they are spreading the tragedy model of autism and the whole "autistic people who have an opinion on autism aren't really autistic---until we need to count them for our scare numbers." It is un-fucking-acceptable.

Step in at my doctor's office. Whatever. I can write to them, they know more about autism than "THINK ABOUT THE CHILDREN!!!".

But this, this is an invasion. Those there are MY PEOPLE. Or I thought ThinkGeek was my people.

Apparently I was wrong. By wearing a TG shirt I am advertising for...well, ThinkGeek.

I am not advertising for anyone who donates to an unethical group that wants to ignore and exterminate me, erase my existence and experience, that plagiarizes me (bonus points for trying to go over my head to an NT for use of a segment on self advocacy. FAIL FOREVER!), that has supporters who threaten me physically, that has private jets and ridiculous offices when so many autistic adults (oh wait, we don't exist) and so many families are barely getting by. I am not advertising for anyone who thinks that's a remotely acceptable group to donate to.

I suspect ThinkGeek really shat where they eat with this one-they likely have an awful lot of autistic customers who share my sentiments.

So, I will be burning my Schrodinger's Cat shirt, a Firefly shirt, a Pi By Numbers shirt, and my ThinkGeek catalog. "You shouldn't exist" is the message sent by donating to Autism Speaks, and the corollary is "we don't want your money."

Wish granted. Not another dime.

Be aware of THIS

2011-04-05T00:09:00.000-07:00

This was my 2008 Autism Awareness Month post.

Ah April, the true cruelest month, at least if you are autistic or sympathetic towards autistics and what we really think. "Autism Awareness Month", they call it. Awareness of what? It seems more and more to be awareness that many parents feel cheated because they didn't get the typical or supertypical child they feel they so richly deserved, a month of awareness of how the PARENTS feel they suffer, a month of awareness of all the things they are putting the child through to put themselves out of their misery. Quackery awareness month, even, but of course no one will come out and call a spade an effing shovel because autistic people don't count in this society. That's right, it's a f*ing shovel.

With that in mind in this vomitous puzzle piece bedecked month, here are some things to keep in mind if you intend to "do something for awareness" or are bombarded by people who are (or are asking you why you aren't):

1. "Awareness" is not the same thing as information. I can get 10,000 people to wear a puzzle ribbon pretty easily but that doesn't mean they know a blessed thing about autism. "Awareness" is crap.

2. "Awareness" is a vague goal, in addition to being crap. Awareness of what? Awareness of what autism IS? No, no one exactly knows and that's too much like information. Awareness that adults need services too? No, we don't look cute on their posters. Awareness that autism is more than just people smearing shit and banging their heads? No, that makes us sound too much like people. Awareness that many parents think that ohnoesvaxxeenzeetbabeez and they need to follow their GooglePhD protocol to rescue them and need YOUR MONEY to do it? That particular faction shouts the loudest. Note how few autistic people are served by "awareness".

3. Please be AWARE that autistic people are just that, PEOPLE. We don't need the dehumanization that nearly invariably comes with the "human interest" stories. Even if we don't talk, we can hear and pick up on the attitude that exudes from these pieces.

4. Please also be AWARE that we are AWARE of autism year round, and thus don't necessarily feel the need to do more than we do every day-namely, being ourselves. Conversely, if other people happen to notice us being ourselves more during April, that isn't necessarily us "acting out", but so called awareness making people more aware or self conscious or whatever. The rest of the world can suck it up and deal.

5. Consider that we may not want to read every article on autism, go to every (or even ANY) autism event, or watch every program. See dehumanizing, above. This holds especially true for anti cure folks and those of us who have more than had our fill of the dehumanizing vomitous pity party garbage.

6. Be AWARE of not just the "valiant struggling parents", but also the children and adults who are doing well, the ones who aren't doing well, and the ones who are doing what THEY consider well and are happy.

7. Be especially AWARE of the autistics who's parents, caregivers, and others bought into their own self pity and have done terrible, often irreversible things to them. NEVER EVER forget those who are no longer with us, for the crime of being autistic.

I really hate Autism Awareness Month. For my part, I will be being myself and perhaps breaking out a couple of my more pointed neurodiversity shirts. That's about it. I don't do big bursts of awareness.

Alternative Autism Awareness

2011-04-05T00:07:00.000-07:00

This is a repost from April 2006. It's one of the first blog posts I ever wrote ever.

Autism Awareness Month?

Or is it "Fundraise for cash to get rid of autistics month"? Anyone who isn't AWARE by now lives under a rock. So. What do we do about it?

I propose an alternative way of celebrating. Forget the fundraisers. NAAR, CAN, DAN!, MOMA, AutismWeeps, all those organizations can piss off. Let's make people REALLY aware of autism.

When April rolls around, I make a point of stimming in public. A LOT. Not hiding the lack of eye contact. Wearing shirts that I made myself and the one I have from ANI that have autism-positive wording. I've been known to make people "talk" to me in writing. Sensory simulations for NTs, done well, will make them aware all right, but it's important to emphasize that it's the world's turn to change, not ours. We've adapted to their world since the beginning.

If I could get the gig, I'd talk to school kids about autism and how it isn't bad, just different. Get them while they're young. Teaching autistics about their unique brains is another one I want to do on a larger scale. We need more "unique", "talented", "what a great kid!" and less "emergency," "epidemic," "tsunami" language.

The most important thing isn't getting rid of the ghastly puzzle ribbon (though I sure wish we could!). It is making people aware of what we are good at, as a group and individually, instead of just where our weak spots are. Educating people that being autistic is OK. Even being nonverbal is OK (alternative communication anyone?). Teaching them that cure isn't the answer, but instead meeting us halfway. Teaching them that abuse isn't necessary to for us to learn skills.

We don't need Autism Awareness Month. We need Autism EDUCATION Month. Educating educators, parents, other professionals, random kids and adults in public, and educating OURSELVES. This is what we should be doing. If only the big organizations could see it...

Loving Lamposts

2011-04-02T21:07:00.000-07:00

"He knows he used to have autism and that makes him sad."

This statement in the documentary Loving Lampposts has been haunting me. It is among the most tragic sentiments I've ever heard. My heart aches for that child-not because he 'had' autism, but because who he is is seen as shameful. His brother was described as "having some of the same thought processes as autistic children...but if anything, he's gifted."

And attitudes like that, attitudes that autism is a horrorshow and we're all doomed to utter incompetence, is why Loving Lammposts gets happy flappies from me.

Why?

This documentary leaps in where angels fear to tread: Todd Drezner interviewed people on all fronts of the autism wars. He talked to Jenny McCarthy. He talked to people selling quack treatments. He talked to cure-oriented parents buying those treatments. He talked to true believers in the vaccine hypothesis. He talked to scientists, experts, and 'experts.' He talked to acceptance-focused parents. And he talked to autistics.

Representing all factions in the often heated discussion about autism is no easy task. How can it be, when one group is convinced another is malignantly misguided, and another is convinced that their opposition wants their kids to fester, and more people are convinced an autistic isn't an autistic if they have an opinion on autism? It's hard enough to wrap your head around the idea-now try presenting all viewpoints in a respectful manner in a fairly short documentary. Yeah, like that's possible.

Except apparently it is, because Loving Lampposts is exactly that. Everyone has their say. Even we have our say, which doesn't happen in the autism world much.

Through interviews, Drezner put human faces to all the views on autism. That's something that gets lost in the heat around autism-that everyone involved is a human. The parents who are frantic to fix their 'broken' kid are human. Those kids? Also human. The parents who are striving not to fix but understand? So human that I wanted to reach out and give some hugs. And their children? And the autistic adults? Three dimensional really real people.

I've been anticipating this documentary since I met the production crew at AutCom in 2007. It was worth the wait-I've been recommending it to everyone who wants to know about the autistic community, the autism communities, and their relationships to each other.

Loving Lampposts is a slice of getting it that exceeded my expectations. A++, would watch again (and again...and again...and again).

Anti Bullying Stuff

2011-03-19T12:56:00.000-07:00

Most of you likely aren't going to like this. In the words of swim coaches everywhere, "Suck it up, Buttercup." It's true.

A lot of people my age and a little older are leading the anti bullying charge. A lot of parents, mostly, and adults who were bullied as kids, and parents of kids who were bullied.

Welcome to the fucking 80s & 90s, kids. Bullying was a problem when I was a kid. Bullying was a BIG problem when I was a kid.

By "big problem", I mean:
-I got thrown down the concrete stairs at my school.
-I got stuff thrown at me.
People put stuff in my hair & smeared it on my uniform skirt.
-I spent 2 years avoiding art class because of the rampant hooliganism (and I have not picked up a single paintbrush without throwing up since 5th grade).
-I got locked in a locker.
-I got suspended for getting myself OUT of said locker.
-Pinching, pulling, shoving, mocking, alternating excluding & including to have an object of mockery, and more.
-There was such a culture of asshattery, physical & emotional torment, and general being shitty excuses for human beings that the last time I went into that school building, I-again-couldn't stop throwing up.
-The administration aided & abetted by ignoring & telling me it was my fault for, I guess, being there.

This was at the 'smart' school, full of 'good kids'. I have clinical PTSD from my 'smart' school full of 'good kids'.

Now those same 'good kids' are involved in leading the charge against bullies. Do they not know what they are? They are bullies. They are repugnant. They are hypocrites.

That's right, hypocrites. If you behaved like my classmates did, and are now against it-without ever acknowledging that you were the biggest turd in the toilet bowl-you are a hypocrite.

You don't want your kids to go through what you put me, yes me, or others like me, through. Yet you won't admit "I am a shithead. Who I was as a middle schooler is exactly what I am fighting against, because I was a shithead."

Oh no.

We can't have that. All the children of my generation suffered overly inflated self esteem and became bullies, were coddled for being bullies.

Do they remember what little assholes they were? How could they not? Do they really think they were so fucking awesome that they're exceptions to the "don't be a jerk" rule? But the children their kids are interacting with aren't?

No?

Maybe they DO remember what fucksticks they were & don't want to admit it. Then they'd be -oh noes- wrong about something. Ever.

We can't have that.

If you want to fight bullying, start by admitting you SUCKED. Admit it loud & often. Don't make excuses. Just do it. "I sucked and I am sorry. Here are the ways I sucked. If you, progeny mine, ever pull the kind of shit I pulled, I swear to $DIETY I will hand you over to your victims to be a pinata, as my parents should have done with me, because I deserved it & you would deserve it too."

That's the first step to joining in-admit YOU sucked. If your kid is being bullied, tell them YOU sucked, just like the kids they are dealing with. You don't get the martyr point of view if you were one of the asshats like the ones I went to school with-fight for your kid, but don't dare act like you are the one being hurt by bullying or that bullying is new.

The kids being bullied are the ones suffering. The kids who you bullied, who have PTSD from your behavior, we suffer. Don't fucking DARE say it has always been your cause if it hasn't. Stand with us instead of shouting us down for a change.

And no, I don't forgive you. And I never will.

Thoughts for Budding Advocates

2011-03-10T23:37:00.000-08:00

I've been around advocacy for a while-long enough that I'm baffled that people don't know what neurodiversity is & can't believe that people don't know why r*tarded is offensive, but not so long that I really expect to be 'known'. I've been called a firecracker, a force of nature, & the irresistible force meeting an immovable object-those are my qualifications to write on the matter.

This is directed at those of you who are just finding a passion & something worth speaking out about.

Know that it isn't always easy. Know that it gets harder before it gets easier, & that's not necessarily change, but you getting used to the work.

Know that people tend to hold to their prejudices. They may not take kindly to their behavior being called out. It's up to you whether or not that's a part of the battle you wish to take on-I do, but I'm not going to think less of you if it's not something you're taking on at this time. Do what you can do, y'know?

Know that as you get involved in causes-particularly social justice sorts of causes-you'll pick up on more things as unjust. You can try to save the world, but you'll burn out. We all do what we can, right?

Don't be afraid to get angry. Effective activism and polite activism are mutually exclusive. Harness your anger for what you are trying to accomplish. It's ok to offend people sometimes--they can't be offended if they aren't listening.

If you need to take a break, do it. This isn't always an easy thing, activism. That's why it's best to do what you really mean, what you really believe in.

Other people are fighting your fight too. They're your allies. They may not be your friends, but they are on your side.

Good luck changing the world, even a little.

What epilepsy is.

2011-03-06T18:41:00.001-08:00

Epilepsy isn't just seizures.

Epilepsy is always having to be vigilant.
Epilepsy is knowing every escape route in case of a seizure.
Epilepsy is having to carry a first aid card, an ICE sheet, and wear a medicalert.
Epilepsy is doing all that, knowing all too well that no one actually looks.
Epilepsy is hoping people don't run away the first time you have a seizure.
Epilepsy is always being told that 'there are meds for that'.
Epilepsy is always having to be aware of potential flashing lights.
Epilepsy is having to choose between leaving a place & risking the lights.
Epilepsy is teaching other people how to turn off their red eye reduction flashes.
Epilepsy is having to explain why that matters.
Epilepsy is people telling you that your safety is less important than their picture.
Epilepsy is being yelled at for advocating for yourself.
Epilepsy is being yelled at for not advocating firmly enough.
Epilepsy is being yelled at for not being able to be diplomatic about how someone is hurting you NOW.
Epilepsy is being told you don't have a real disability.
Epilepsy is often being disabled by the very people who tell you that.
Epilepsy is spending days making arrangements so an event is accessable.
Epilepsy is having those agreements be broken, ruining your weekend.
Epilepsy is being expected to thank people for almost making an agreement.
Epilepsy is being yelled at for saying “you could have done better”.
Epilepsy is being expected to be nice about them trying, even if you just had a seizure that they caused.
Epilepsy is people telling you to stay in your house if others cause dangers.
Epilepsy is people thinking you are being too cautious by avoiding people known to be ableist.
Epilepsy is not knowing how many flashes will be a problem, but that whether 2 or 20, it's coming.
Epilepsy is having to educate people unwilling to learn, and doing so while you are at your worst.
Epilepsy is not being believed about your needs until you are in a drastic situation no one was willing to be ready for.
Epilepsy is being expected to be grateful when people almost treat you as a real person.
Epilepsy is knowing they don't think you are a real person.
Epilepsy is always hearing “you are an extreme minority so you don't matter”.
Epilepsy is hearing that from another minority who should get it.
Epilepsy is being unable to win, ever, because the rules keep changing, and giving up is losing too.

On Atheism & Disability

2011-02-27T15:04:00.000-08:00

I've been noticing something lately:

In groups centered around disability (at least the ones I know of), there's a lot of godding it up.

I mostly hang around the autism & epilepsy parts of the disablilitysphere, & I hear a lot about praying, I hear a lot about "His will be done", I hear a lot about evil. I hear a lot of thanking God (or equivalent) when a treatment does what it is supposed to do.

I hear that my neurology is an act of evil, the destruction of God's Perfect Creation. And I hear that anyone who doubts that is an agent of Satan.

Say what now?

I'm an atheist. I believe in no gods. I don't believe in any gods. I strive to live an ethical life and to be the best Neurodivergent K I can be. I know damn well that when my medications work, it has nothing to do with God, but with science working. I know damn well that when things don't work, it isn't the work of Satan, but of an incomplete understanding of all brains and mine in particular.

If it makes someone feel better to pray or engage in other superstitious behavior, more power to them. As long as they aren't hurting anyone, good for them. I can sort of see how believing that one's own or one's child's condition is part of some giant ineffable plan makes it easier for some people to deal. I disagree, I think it's magical thinking, but again--whatever helps you sleep at night.

That isn't how it's used, though. I don't just see the harmless ritual around the disabilitysphere.

I see blame.

I see vengeful religion.

What is vengeful religion? It's prayer and faith as a weapon. It's using your gods to say "you are a horrible person for disagreeing with me, and I wish more than anything that my skydaddy would strike you down." It's "LALALALA YOU NEED TO SHUT UP BECAUSE MY GOD SAYS I AM RIGHT". It is things like "I pray you don't work with people" after a disagreement. It is things like "you are evil and work for Satan" because one is atheist. It's angrily 'praying' that my heart be softened or whatever because I am clearly bitter or something about being me. (Fact: I like being me. Who I am doesn't believe in gods. Whoopie shit.)

If you are theistic, and you run across me or another disabled atheist, don't jump to self righteously pray for me; it's obnoxious and condescending. Don't assume that when I argue with you or state that I don't believe in gods it's because of bitterness with my lot in life-I'm not. Seriously, I'm pretty great. I am pissed as hell about poor treatment, I am pissed off by holier-than-thou self righteousness, I am pissed off by a lot of social problems, but I am not bitter about your invisible friend testing me. Imaginary things aren't worth being mad about.

The behavior the imaginary things are used to justify, though--that's often worth my wrath.

To the Newly Diagnosed (Especially Teens & Adults)

2011-02-22T23:34:00.001-08:00

So you just found out you're autistic. You've been living your life wondering why you have such a hard time with things other people find effortless, why you notice things others do not, why you feel out of step with most of your peers.

And you hear the answer is autism. And the mix of emotions that goes with it is confusing-relief, fear, denial, acceptance, a thousand things.

Welcome, and Congratulations.

Welcome to a community that takes care of its own. Welcome to a community of people who get it. Welcome to a community where being unusual is acceptable, where we know that your difficulties in 'easy' tasks are not a moral failing, where we know that your strengths don't negate those difficulties. We have drama and personality conflicts, as do all communities, but we also have a lot to offer each other.

Congratulations on getting an answer. Congratulations on being an individual. Congratulations on being you-you're probably pretty fantastic.

Some advice, whether you want it or not:

-Be yourself. To hell with anyone who thinks that who you are isn't ok. At the end of the day, you are the one who has to live with you. Trying to put up a normal facade day after day is unsustainable.

-Take care of yourself. It's ok to excuse yourself from situations that are overwhelming or painfully difficult. It's you who has to live in your skin and your brain, not anyone who tries to give you crap for it.

-Don't let anyone make you think you are broken. You aren't. Different, yes, but faulty? Nope. Having difficulties isn't the same as being fundamentally broken.

-As a corollary, don't go chasing every so-called cure that comes out. They are usually scientifically bassackwards, usually expensive, and often harmful to your vital organs.

-DO get any therapy that may be helpful. Anxiety is crappy. Sensory issues are crappy. Insomnia is crappy.

-If you have health issues, take care of them, but don't expect that to cure your autism. It won't, but it's a lot easier to function in this alien world if you aren't also sick.

-Seek out our kind. There's nothing like being in a place where everyone speaks the same dialect. It's beautiful. You need to experience the ease of relating to people who grok.

-Non autistic people sometimes get it, too. They're good people to get to know.

-Accept yourself as you are. Strive to be the best you that you can be. Always.

With open arms,

Neurodivergent K.

Punishment for "Coping Well"

2011-02-06T10:40:00.000-08:00

If you have a disability, especially one that isn't visible, there's this really strange phenomenon. Apparently one is supposed to live their whole life afraid & dependent & limiting oneself.

If you don't, you are said to be "coping well" & therefore able to do without having your support needs met. A few examples for you:

There is a woman who attends a certain autism group that I attend as well. She is MEAN. She is a bully, she has no regard for anyone's needs but her own, she breaks the confidentiality rules (as loudly as possible. In downtown Portland. My Deaf friend could hear her. Said Deaf friend does not use hearing aids or anything of that sort). She is manipulative and sneaky and seriously, she's mean.

Get pushed too far by this sort of person, stand up for yourself, get yelled at. Why? Apparently because I am smarter than she is, or at least more articulate. Fun fact: I have intense sensory issues, I do not tolerate bullying, and once you push my (fairly well known) buttons to hard, I will absolutely tell you exactly why you are wrong, and quite possibly what I think of you. And you deserve it! Bullying continues & is taken to other venues. Mention it to the powers that are in the particular autism group. Get yelled at! Fuck yeah, enablers! Being smart does NOT mean I am not autistic, with real support needs, with real needs to not be bullied by people who are supposedly my own, with real needs to not have it overlooked & tacitly supported because I am superficially a bit more "normal" (here read this as: I give a flying fajita about other people & I don't SHOUT EVERYTHING I SAY EVER).

I've been sitting on that one for over a year, but it never fails to piss me off. Ever. How dare I be the non-shithead kind of autistic??

Or epilepsy! Yes, I do stuff that could be seen as risky-gymnastics, I go places alone, stuff like that. So then when there is a real access need, it can't be that important because I take care of myself pretty well? NO! I can navigate my environment because I make eliminating changeable triggers a priority. It's a priority so that it's safe for me to go places. What is so difficult to understand about this? I mean, besides the "legal obligation" part, or the "don't be an asshole" bit?

And if you have a disability, and you disagree with what Tragedy Model pushers say, if you do anything independantly you must be full of shit. No. I'm living my life. There is a difference, and fuck you right to hell for putting us all in a place where we can't win.

Autism Speaks: SHUT UP AND LISTEN

2011-02-04T10:17:00.000-08:00

I mean you. Right now.

I protested you. You know damn well I protested you. It's not a secret. I wore a shirt that said "Celebrate Neurodiversity", carried a sign that says "Autism Speaks does not speak for me" with your ugly blue puzzle piece all crossed out, talked to parents about why you are so damn toxic. Does that look like a person who wants anything to do with you?

And then you go and quote me?? In your transition kit??? AND YOU GET THE ATTRIBUTION WRONG??? No, I was not fucking diagnosed at 18. I found out at 18 I'd been diagnosed for-freaking-ever. There's a difference. A substantial one. But hey, any misleading thing to try to shut up autistic adults, right?

Oh and there's the whole "Not asking" thing. I know, it was a publicly available work, but it would have been ethical to ask if you could use it, if the context was correct, if I wanted in any way to be associated with you (which I don't. Except protesting you. I'm ok with that, no matter how many of your supporters tell me to go play in traffic--3 was the count this year. Other obscenities rate much higher).

Shut up and listen: this is more talking about us without us. You can't yank a quote--even a good quote--and get the details about that person wrong and just use it when you know damn well they dislike you and all you stand for intensely. That isn't involving autistics, if that's your excuse. That's more of the same thing we've been getting for years, acknowledging us only when convenient.

Shut the hell up and listen.

The academic socialization of girls.

2011-01-20T23:56:00.000-08:00

Not too long ago, I was a young girl. I was a smart young girl. I was a smart young girl with an aptitude for math and science.

I knew this wasn't acceptable.

Here's the thing--I don't take hints. The message has to be like a hammer on a recalcitrant nail for me to pick it up. But I still got the message, loud and clear, that it wasn't really ok for me to be good at math and science. I was in the advanced groups for both of these classes, I attended an accelerated school, and the message I got was still "being good at math and science isn't for you. It's for someone, you know, male."

As a fourth, fifth, sixth grader I started to wonder why there were only 2 other girls in my fast-paced math class. Of course a boy usually had an answer, it was a 5:1 m:f ratio-probability just says so. But I don't know that there was ever any encouragement to get us to speak up. I consistently scored extremely well in standardized testing, yet boys who I knew didn't do better than I did were selected for a couple of competitive test situations. In 6th grade when I stopped mathematically functioning between school situation induced (gifted kids are real shits, I'm telling you) depression & an 8 AM math class, it was shrugged off as "not very good at math" as opposed to, oh, maybe I was depressed or not awake or both or something? The "girls aren't good at math" wasn't so much spoken as implied.

Science wasn't quite as insidious. Early grades, yeah, I was good at science. I was allowed to be good at science-we had a teacher who was truly gifted at bringing the subject alive for all sorts of learners. Then in 6th grade, we got a pair of new teachers. The one was female & gave the impression that she was there to organize stuff & proctor tests, whereas her coteacher was male and blatantly sexist. Again, my class had a very high boy to girl ratio. That's no reason, however, to only call on boys and to have them get to do all the work in lab. This teacher actually made sure that there were no all-female lab groups for dissections because "girls think dissection is icky". Yeah, no Mr T, 11 year old me positively lived for looking at critter guts. Being a secretary? Not so much.

We had that teacher for 2 years & by the time they split our class into more advanced/less advanced groups, I was completely shocked that I landed in the warp speed group. I was bad at science, Mr T had made it abundantly clear.

Turns out, I was pretty damn good at science. Good enough to skip freshman science & beat the future valedictorian of the grade above mine in Honors sophomore science. Turns out, I was pretty damn good at math too (again, skipping freshman math entirely). But it was a bit late.

No one really said anything outright, but there was this attitude everywhere about me taking those classes as a freshman. No one would have dreamed of asking "are you sure you belong in this class?" but they thought it awfully loudly. There was a lot of scrutiny that I didn't see the few freshman boys who also skipped being subjected to. There was always that disbelief oozing off people when they saw my books or asked what I was taking. It was really uncomfortable, to the point where I stopped answering the question or doing my homework in front of people at school.

That, it turns out, doesn't work. My sophomore year (Advanced Algebra/Trigonometry) teacher was a skeezebucket, & he blatantly went out of his way to make girls uncomfortable. Do not touch me, ew. So I dropped from Honors and the general consensus was "girls are bad at math". Not "Mr H is a skeeze and why the blazing fuck is he leaning on people when they take tests?" but "well, she's a girl". Really?

And this is all considered ok and normal, even now. I work with a bunch of junior high kids who have figured out that being good at math & science is dorky for a boy, but inexcuseable for a girl. And that isn't right. I'll see a flicker of enthusiasm for something, and then they'll remember it's science and feign boredom. It's so sad. Not only is it sad, it's angry making. There shouldn't be social consequences for being damn good at something, but there are. And I blame the patriarchy for spreading the "girls suck at math and science" meme.

And for all you "women aren't interested in science careers" evangelists, I almost went to a math & science high school. I wanted to major in biomechanics. Hell, I'm in my late 20s and I still want to major in biomechanics. Too bad I was pressured to go into something else. Why? "The math & science requirements for biomechanics are pretty difficult". Even on college entrance, being good at these things was unfeminine, unacceptable.

Girls of the math & science aptitude, who see the problems as puzzles, not chores, girls who want to know how shit works, rock on. Chase your dreams. Don't let anyone, anyone, tell you that you can't be good at it, that it's too hard, that it's for boys. It's for you. You're as wired for inquiry and problem solving as anyone. Maybe when you're my age, the days in which I grew up will be the draconian stone age as far as academic equality goes.

Maybe your work will help make that happen.

Why I dance. Why this is a battle worth fighting.

2011-01-13T13:52:00.001-08:00

I swing dance (East coast/lindy hop) at least twice a week. I do this in spite of access issues that have been getting progressively more frustrating (and more hostile to deal with). It's possibly going to turn into a big legal & publicity shitstorm because being nice hasn't worked, being direct hasn't worked, and being mean hasn't worked.

So why do I bother?

Dance is good for me, that's why.

I have made friends. Not only that, but I've gotten better at making friends. I've gotten better at talking to people I don't really know. Approaching them is easier with the practice I've gotten over the past year.

Dancing is a peer recognized skill. If you can dance, that's something in common with a whole bunch of other people. If you're good, then there's something about you that people think is pretty cool, even if you never look them in the eye. I'm a quick learner-I'd not say I'm good, but I'm competent. I'd be lying if I said it doesn't feel good when people are surprised that I've been dancing for less time than they thought.

Dance is exercise. It uses up a lot of the energy I used to burn with gymnastics. It's not like going & lifting weights-it's the kind of workout that sneaks up on a person. Dance is so fun that I don't realize I'm pushing some of my physical capabilities until my calves start hurting the next day.

Dancing is a conversation without words. I'm not so great at reading people's body language. I'm not so good at reading between the lines when they talk. Following is sort of practice at reading people's intentions, but without the social traps waiting. If I can't read your body language, I could say or do something that's the opposite of acceptable. If I mis-follow a lead, whatever, it happens. It's practice, though, for at least seeing other people's cues. I still don't recognize facial expressions, or what people's changes in posture and such mean, but I've been noticing them a lot more.

Dance is freeing. It doesn't matter what I cannot do, it does not matter that I am fundamentally different in wiring, it doesn't matter that I perceive the world so differently from every one else. It's made up of movement and music. The language of dance is one that I can speak relatively instinctively, unlike so many other languages that people use. It's so liberating to be on a level playing field in at least one area of my life.

Not like I should have to defend what I do for fun, not like I should have to enumerate the benefits-"I like it" should be enough-but there it is. That's why this battle is worth fighting. Maybe I can dance with the next person who fights this battle, too, and we can be unstoppable.

You didn't win. I just gave up.

2011-01-13T13:30:00.001-08:00

A big part of my life is dedicated to advocating for my own needs. Why? Because if I don't do it, no one else will. I have the strength of personality to face down asshattery again and again without getting too discouraged. Angry, yes, but I don't give up easily.

There comes a point, though, where I just shut down. I cannot have the same discussion in different ways again and again. Once you start looking for loopholes, start argument-from-toning (hint: I'm an adult. "That behavior in trying to get an immediate need met is inappropriate" is pretty much the most asshatty blame deflecting thing you can say. Ever. If you have ever said this to someone advocating for herself, climb a rope and let go over a pit of spikes. If you cannot yet climb a rope, I will teach you), start making excuse after excuse, I cannot continue dealing with you. If you staunchly refuse to listen to my well educated thoughts on a matter, then beating my head against the brick wall that is whatever topic is at hand isn't something I am willing or able to do.

You don't win if I'm not able to continue a discussion with you, though. Giving up on talking to you doesn't mean I gave up on the issue at hand. It means I am looking to route what I need around the false roadblock you set up. You don't think disability access is your problem? Sucks for you, since legally you are wrong and the court will cheerily tell you otherwise. You don't think that I know the first thing about my medical crap? I want a second opinion, from someone competent. I know you aren't competent because what you told me is the exact opposite of what the technical literature told me. Oh snap.

Once I give up on you, you are probably in for fury the likes of which hell hath not seen. I have other resources. Don't make me use them. Yes, I get overwhelmed, but I have that soul of steel that only lets me wallow in that for a few days if the issue is truly important to me. You only think you want me to give up on you.

I reserve the right to be pissy.

2010-12-07T23:59:00.001-08:00

Always.

I don't have to be 'nice' in explaining my needs. It's my right to have a number of them met. It doesn't matter if I coat in in candy or dip it in acid-it's still a need. I don't HAVE to be nice to you when your vest or your helmet or your phone charm is strobing in my face. Telling me you didn't know or you didn't think you'd come across someone for whom it's a problem isn't going to impress me; you could end the sentence at "I didn't think".

No matter how I present them, my rights are my rights. My right to not have a preventable seizure or to not be run off the sidewalk (cyclists, I'm looking at you. Well, I'm not, actually, because you're neurological hazards on wheels, and if you run into me because you thought the sidewalk was yours so help me I will end you AND your bike) or to be presented important information in a manner I can process and use or to block sounds that overwhelm me in a manner of my choosing.

My rights are my rights.

I have a right to be nice. I have a right to be snarky. My only responsibility is the one I have to myself, that of getting my needs met. I don't really care if you're offended if I'm abrupt or pissy. Your feelings are not my concern. You really have no place lecturing me on how I present my needs, especially in a situation where the only option is to do something about it now. Being nice doesn't work. Letting my snark flag fly does. Talking to you as though you're choosing to be an asshat works a lot better than assuming you are unaware. Talking to you as though you're choosing to be an asshat gets your attention. Being nice doesn't. It just makes you feel fuzzy.

It is my right to assume you're an asshat. It is my right to be pissy when you are making my brain hurt. If you decide that it's your place to Argument From Tone me about my needs, my assumption that you are an asshat is correct.

They are my rights. Nowhere among anyone's rights are included the right to not be made uncomfortable or the right to not be offended.

Those aren't your rights.

Being pissy about mine is mine, though.

I am not your inspiration.

2010-12-04T16:09:00.000-08:00

I cringe every time I see a story about a person with disabilities doing something, anything. Why? Because the words "inspiration", "heartwarming", "overcoming obstacles", and similar set off my gag reflex.

My brain and body work differently from most people's. That doesn't make me inspiring. It makes me different. I happen to do things that most people with similar disabilities can't do. But guess what? I do things that most people without disabilities can't do either. It isn't inspiring that I do backflips, or teach kids to fly, or anything else that's a bit out of the ordinary. It just is. It's my life, not some story to warm the cockles of your over-privileged little heart.

And when people get all gooey over someone with a disability doing things within the realm of what's expected for a nondisabled person? I kind of want to go on a rampage with a spork. It is not inspiring when 2 people with Down Syndrome date. It's 2 adults having a life, and it's disrespectful and infantilizing to go "awwww" at it. When an autistic woman rakes leaves to pay for medical treatment, that's not adorable, that's a really sad statement on this country as a whole-don't be all "ZOMG I AM INSPIRED", but be disgusted that to afford necessary treatment someone has to go door to door. If you're going to be inspired at all by that, be inspired to change our world.

If you find yourself saying "That's so inspiring, I could never live with what that person does. And they do all by themselves! My heart is warmed!" you need a privilege check. Badly. It'd be upsetting if someone said it about you, and it's damn offensive when you say it about us.

Don't be inspired by us because we happen to be different. If you must be inspired, be inspired by our vision, our ideas. Don't be inspired by our existence. It's just my life, and I'm living it for me, not to warm your heart.

What's a Rescue Medication?

2010-11-11T11:33:00.000-08:00

I keep referencing rescue medications. Turns out not everyone knows what that is! Not everyone with epilepsy needs one, and there are rescue meds for other conditions-nitroglycerin for angina, for example.

For me, a rescue medication is something taken as needed to stop clusters of seizures. I try to take half a clonazepam during an aura since most of my seizures bring company.

That doesn't always prevent a seizure, but it seems to reduce severity and duration of what does happen. Having a rescue medication has made living a very active life easier because it can be the difference between a cluster of 3 and a cluster of 30 seizures.

Epilepsy and Gymnastics

2010-11-10T22:17:00.000-08:00

This one is another "in my experience" one. This is in no way shape or form medical advice, and in fact I have met doctors who think that my choice of sport was evidence of a subconscious deathwish.

I've been participating in some form of gymnastics or another for years. I've had epilepsy for years. Most of these years overlap. I've dealt with medication changes, seizure fallout, side effects, and all the other joys while also enjoying a high-flying sport.

My primary form of gymnastics was tumbling and trampoline. My best event was always tumbling because everything is entirely what I can do with my own power. Sometimes my skills were a bit sluggish, but they weren't ever scary or particularly dangerous. Trampoline was my worst because you have to hit the trampoline 10 times and every change in body position or proprioception is magnified by the elasticity of the trampoline. It's also easy to get a little off if you aren't able to focus. Double mini trampoline is only 2 skills, so it was my best when I was sluggy. The worst I experienced with epilepsy meeting tumbling and trampoline was having a partial complex at a meet. I had to withdraw after my coach realized that everything I was doing during warmup was autopilot. I've never had a tonic-clonic while in the air.

I did artistic gymnastics as well. Floor was my best event for much the same reason tumbling was--it's what you can do under your own power--so even when I was a bit wonky, I could make something work. I was very good at beam in practice. At meets or during a medication change, beam went to hell because it's all about precision and attack, which I do not have when my body feels alien. Postictally I was pretty awful at beam, but nowhere near as bad as I could be on vault. Vault involves running as fast as you can at a stationary object and hitting a springboard exactly correctly so you can fly over it. Speed doesn't happen postictally. Visual perception doesn't happen postictally. I know exactly how hard I can run into a vault, and the answer is rib-dislocation-hard. Uneven bars was the hardest for me because being even a little off makes it hard to muscle through things, and every time my body or brain changed I had to completely adjust the timing of moves. It was never a strength problem, just a consistency issue.

I came mightily close to seizures at a couple of artistic meets because of the techno floor music trend, so I did compete while heavily benzodiazepined a few times. Sluggish gymnastics lead to sluggish scores, but I didn't ever get hurt, fortunately.

There were a few things I needed to do to make taking epilepsy to the gym relatively safe. First, I needed to get very familiar with the difference between "aura" and "I need to eat/I'm working too hard/I'm tired/side effects". Second, I needed to disclose to my coaches that I have seizures, what they look like, and what to do if they occur. We needed to discuss a seizure plan, and for a period of time I kept rescue medication in the gym office. Third, during every medication change I had to chart side effects that might matter & we had to adjust expectations during workouts and competitions. For a while I was playing catch-up with private lessons since a particularly hard period made learning anything impossible.

My coaches ended up learning a few of the subtle signs that indicated a seizure was imminent. We had an agreement that they could send me for a snack & ask me to get off the equipment if I was worrying them. If I needed to take a rescue med, it was fine and I didn't need to announce it. Part of our agreement was that I was to wear medical identification at all times gymnastic & I was to carry a seizure protocol card in case they weren't the very first people around if I seized.

There was a lot of planning involved, but I got to do the sport I love in face of prejudices that say I shouldn't have. I still love gymnastics-it makes me feel invincible, like I can fly, and I wouldn't trade that experience for anything.

Anticonvulsants & me

2010-11-09T23:07:00.000-08:00

I've been on a shitton of antiepileptic drugs. People always ask me about them, their effects and side effects. So here we go, with the good, the bad, and the whatthefuck. These are in no particular order.

Tegretol: I really liked Tegretol. It was absolutely amazing for my seizures (both times I took it). Unfortunately, it ate my blood cells for breakfast (twice). Seizure free, alas, I felt like crap.

Trileptal: I did not so much like Trileptal either time I was on it. Both times I took it, I was extremely uncoordinated and my brain didn't work. It made me sleepy-for me, a plus-but it didn't actually work for the seizures. As in I started having frequent absences and had a few drop seizures. It kind of sucked.

Topamax: I took Topamax from 2003 until 2010. I really did well on it for the most part, though my effective dose went up and down depending on what else I was taking at the time. I did get a bit of cognitive dulling, but it wasn't bad and it did teach me left from right. I got kidney stones as well, and did have a few borderline tests of kidney function, which is why I stopped taking it.

Zonegran: I took this twice too. It worked, ish, and made me sleepy at first but that always wears off quickly. The first time I got a bit of a facial rash, but nothing severe, and the second time it seemed to aggravate my kidney stones. It made me slightly stupid but nothing I couldn't have lived with had it worked.

Lamictal: Yet another twice tried, twice failed. It worked more or less, and even eliminated an ongoing headache. I really wish that I could take Lamictal. Alas, I got the rash. Twice. The first time it was bazingly obvious; the second we thought it was recurrent sinus infections until I sneezed out my sinus lining. It was so cool. Disgusting, but amazing.

Keppra: I love Keppra. A lot. It more or less works for me. It makes me happier. It made me less dumb. I started taking it right after a significant car accident. Significant is a word which here means "I forgot how numbers work". Within 6 months my math and language skills were back.

Neurontin: I took Neurontin for a few years. When I first started it, I forgot how to get from point A to point B. After a few months I acclimated, which is why I was on it for years. It made me sleepy every time I changed my dose, which was a plus, but it stopped working for my seizures and I felt very overmedicated at the time.

Gabatril: This was a short lived experiment. In theory it would replace Neurontin, but it didn't. I felt extremely spaced out and wasn't particularly coordinated. Since it didn't seem to work, either, we stopped it at about 3 weeks.

Clonazepam: For a long time this was just an emergency medication. I had a phenomenal amount of emergencies, so we added it to my daily regimen for 6 months or so. Going off wasn't hard, and I did not feel as drugged as one would expect. If there were side effects, I did not notice them.

Lorazepam: This was my emergency medication while I was on clonazepam daily. It worked pretty quickly for me and was somewhat sedating. If there were side effects other than sleepiness, I am unaware.

Diazepam: I took this as an emergency medication at one point also. Since it has a long half life, it was ideal for use during hormone swings that bring on seizures. It's not particularly sedating for me.

Temazepam: Yet another rescue medication. My theory during the time I took it was that it knocked me out and gave me a hangover so that I didn't notice seizure activity. Nothing in my life has ever made me sleepier.

Vimpat: This is the most recent addition to the list. I switched to Vimpat from Topamax in mid-2010. I got some headaches and experienced both dizziness and vertigo, but so far it is absolutely worth it. I have had 2 six-week seizure free spells since the switch; that is a really big deal for me. I've had some anxiety that may or may not be related to the medication as well, but the trade off is something I am willing to live with.

My brain is not your punchline.

2010-11-08T23:50:00.000-08:00

I've been searching twitter for the #epilepsy tag.

A lot of what I'm finding is awareness stuff, including Epilepsy Foundation retweeting their Seizure Smart link (I'd post it, but it's too simplistic). And then I'm finding things that make me stabby.

No, you don't have fucking epilepsy in your fucking arm because it's tired. That is called exertional tremor, and arms do not have epilepsy. Brains do, and while they can manifest as arm shaking, that's not the same as exhaustion.

Your friend who is angry is not going to have a godsdamned seizure. That isn't how epilepsy works. They can shout themselves blue at you for being an utter shithead, and yet chances are good they will not have a seizure.

A visually overstimulating video that gives you a headache does not mean you have epilepsy. Seizures do not feel like headaches. Headaches do not feel like seizures.

Whatever you are doing isn't going to "give you epilepsy". Jesus fuck. I could spit in your cheerios and sneeze on your face and put you in a room with all my seizure triggers and if you have a normal seizure threshold, it will not do diddly shit.

You aren't cute, you aren't funny, no, a Ceaser salad isn't dangerous, and my brain is not your punchline.

Hit by a Neurological Truck

2010-11-07T12:02:00.000-08:00

This is my last generic "so tell me about your epilepsy" post. I'm casting about my brain for topics that aren't wangst now, bc 23 days of "people with strobe lights and subwoofers should DIAF would get real old real fast.

The night this picture was taken (and I don't remember taking it) I had had a number of seizures. A double digit number of seizures. I looked and felt like shit.

That's pretty much the standard post seizure thing. I can't really focus. I feel like I got hit by a truck. Words aren't really happening. Understanding language may not be happening. Coordination, not happening. Visual processing, not happening. Moving fast, not happening. I'm tired, have a headache, afraid of stairs because they look funny, probably not really so good with the sense making, a little wobbly, and if I can process what you say, I've got receptive logic, but I don't have the language for expressive logic.

Right after a seizure I can sign but not speak and I want to sleep and don't want to move and I look like that. I actually probably do want company, and I probably want said company to talk to me as long as they aren't upset. I don't know why either, it's just a pattern. I guess if I feel like shit, at least I'm not alone feeling like shit.

I remember pretty much nothing from the few hours following a seizure, to the point of not always knowing how I got where I am. Good times, right?

The day after I look and feel like crap too, but I can usually get through the day. It's a headachey, cognitively screwy, very tired functioning, but it is functioning.

The day after the pic at the top:

First Responders & Me.

2010-11-07T00:55:00.001-07:00

One of the topic suggestions I was given was "how to handle any paramedics or police officers who should happen to arrive during a seizure". This is very much a my-preferences entry. Other people will have different protocols. Some of them may even involve not being terrified of first responders and law enforcement and hospitals.

Let's say it's a partial complex seizure, since even the police officers who stop me for Walking While Autistic can manage to not fuck up too badly in face of a generalized tonic clonic. I hope.

So you're walking down the street with me and my eyes go all vacant and I'm doing the hand thing and all I can say is "I dunno". You're not letting me walk into the street, and I appreciate that. You're calm and not making sudden movements or touching me suddenly and anything like that. Then, a wild police officer appears!

He probably addresses me and asks if I'm alright. Assuming he isn't so aggressive I turn and run, the answer will be "I dunno". That's where things get bad for me really quickly. That's when his (or her, but all the ones who stop me for WWA seem to be male, hence the pronoun) cop reflex jumps from 'different' to 'seriously fucked up'.

The single best thing someone can do for me at this point is to tell the officer that I have epilepsy, this is a seizure, everything will be fine as long as no one gets in my face, thank you for your concern. If you can make him go away, so much the better, but I don't know how to make that happen. Getting in my face-which law enforcement officers DO-is just asking for a bad situation. Under no circumstances let him get in my face or touch me. The self preservation reflexes that are still active are the kind of things that get people tazed. I carry identification that say I have epilepsy for a reason, and this is one of them.

Now let's say the cop happens across us walking down the street when I'm postictal. I'm kind of surprised this hasn't happened already, since there comes a point that I am bone-tired but have access to almost-coherent speech. If I don't want to walk, or am disoriented and afraid to walk, I'll whine and that's a whole bag of "that doesn't look right". Tell them that I have epilepsy, I am recovering from a seizure, and I'm probably still pretty disoriented. I don't know if I'd actually talk to them or not at that point, and if I just had a seizure I can only sign (and am probably not so OK with the walking at a normal rate thing. And will pretty certainly flip my shit if someone I don't know gets in my face. Especially if they do so aggressively). I can register that my bracelet may be useful post-seizure, but for some reason officers of the law aren't willing to read them in my experience. If you can get them to understand that yelling at me isn't going to do anything but cause problems, please, please do. Being aggressive doesn't cure epilepsy.

Or. Let's say for some reason a wild paramedic appears! If they have an ambulance, they need to turn that shit off. I have a visceral hatred of loud sirens and of flashing lights, & she's going to have to suck it up and deal. I didn't want them there anyway. I. Do. Not. Want. An. Ambulance. I am not on drugs. I take my medications religiously. I do not like being touched at tickle-pressure, or at all by strangers. Even if I'm still out of it, any poking and prodding she insists on doing, she's going to have to move slowly, explain everything, and keep everything where I can see it. I probably will be uncooperative and resistant or completely passive because I want her to fuck off. If you can get a good samaratin wannabe paramedic to go away, you're my hero.

The generic themes here are get them to go away, I do not want to go to the hospital, their flashy lights can go play in a fire, and I am very particular about how I accept being touched, especially after or during a seizure, and they will do it wrong. Everything goes much more smoothly if intrusive, aggressive people who I don't know just aren't around me-hence my hatred of hospitals. There are too many ways for them to fuck up, and that has lead too many people into injurious or fatal situations. If I'm going to be a statistic, I'm going to be a living statistic, thanks anyway.

Repost-10Hz lights

2010-11-06T12:11:00.000-07:00

This went up on my old blog about a year ago. Reposted for Epilepsy Month.

They're everywhere. But they don't need to be. It's actually probably illegal for them to be as many places as they are.

Yeah, I get that I can't go clubbing. I don't care that I can't go clubbing, particularly. But I do care that walking through downtown is fraught with hazards. Not just being chased down the street by aggressive panhandlers (true story) or someone taking a stoplight as a suggestion or thinking they've got right of way on a right turn because they're bigger (that happens too), but 10 Hz lights.

Everywhere.

They're on emergency vehicles, which I don't really get. You're going to create another emergency on the way to your already existing one, buds. There are other flash frequencies if you just can't give that up, I promise! There are whole STUDIES on what's least likely to trigger seizures in epileptic people. Since police officers are reluctant to, oh, read medical IDs, really, it's in their best interest to just stop triggering seizures already. And paramedics? It's damned irresponsible of you to leave so much havoc in your wakes. You should know better.

They're the way of alerting pedestrians (you know, people who don't drive? In this great state, incidentally, Thou Shalt Be Seizure Free for at least a year to drive legally) that someone is pulling out of a parking garage. Someone who feels they have right of way because their SUV outweighs you by a couple tons. Yep! Mid aura I am TOTALLY paying attention to that strobe light. I'm looking for the fastest way past it, which is a straight line. Past the SUV. And I *get* an aura.

The public transit system has been failing pretty hard too. I will end the next driver who flashes his lights at me. I will end more ferociously the next who tells me to get a strobey thing so as to be seen. I wear neon orange hoodies. They can see me, and I can actually function while wearing one! Amazing! The lights on the trains tend to flicker while going over bridges. And yesterday, they were giving strobe lights to bikers. What. The fuck. Steady beam, motherfuckers, you can use one.

Bikers, you aren't superior either. Your headlight? 10 Hz. I don't really care that your bike is greener than a bus. Your headlamp makes me want to call you horrible nasty things, assuming I can summon the language. Why does it need to flicker at all? Is there a reason for that? A sizeable portion of my first million, and hipster/socially aware bragging rights, to the first person to make a neurologically friendly lamp. I'm sick of having this conversation IRL, and sick of justifying to near total strangers "you're in good shape. Why don't you do the commute by bike thing?". "well, you see, ending up a mangled mess because I lost awareness of my surroundings because of my own headlamp isn't how I want to be remembered". "you'd be fine". "no. I wouldn't. And you don't matter enough to me for a demonstration".

And then, in the most ill conceived idea in the history of ill conceived ideas...and there have been a lot...some either extremely ignorant or extremely hateful jackass decided that the ideal thing to put on a fire alarm is a FUCKING STROBE LIGHT. Not a red light. Not something changing colors. A fucking EEG grade strobe light. Yes, a visual something is needed to be accessible to the Deaf. That doesn't mean that folks with epilepsy need to die of smoke inhalation/status epilepticus/wandering straight into flames because of the direct effects of a supposed safety device. Fuck that with the business end of a rake. It's not acceptable.

Now go point this out to an 'enlightened' person. I live in a liberal city. There are a lot of them. "But you don't, you know, have a DISABILITY". 'Scuse me? Pretty sure that's not your call, sweetcakes, and if all these things are barriers--and they are dangerous barriers--that's textbook social model (not to mention all the medical crap with epilepsy). Then there's all the crap about if it's that bad, don't go places, or THOSE places, or don't go there alone.

Yeah. No. This is what accessibility means. There's no reason I shouldn't be able to walk down my street, or from place to place downtown, alone. The flashing lights all over are the barrier. They're not even a difficult barrier to change, if people get past "that's the way it is"ness. I'm not asking to go to a dance club safely. I want to know that walking through public areas of my city isn't going to send me home dazed, confused, headachey, crabby, and postictal.

That should be a right. It should go without saying. Is it really that much to ask?

My seizure first aid

2010-11-05T14:05:00.000-07:00

In someone with documented epilepsy, a seizure is not usually an emergency. The line for "emergency" is drawn in different places, usually involving things like injury, right after a knock to the head, excessively long (usually 5 minutes), or repeated seizures without regaining consciousness in between.

For absence seizures, I don't need or want anything. If I have a whole bunch, maybe tell me (and be prepared for me to say nonono) , if I have one on the stairs or something I'd rather not fall down too many. That's about it.

With tonic-clonic, get out a watch & time that shit. If you stick something in my mouth, I will assume that you don't hold your teeth in high regard either & consider taking them off your hands, and if you try to hold me down we will likely both get hurt. Just turn me on my side & put something under my head if you can do that without hurting yourself-I'm remarkably durable-otherwise, just wait till it's over & don't let me choke on my own drool. Isn't that an attractive mind picture?

Usually I have partial complex, which take a little more finesse since I can react to my surroundings (ish. not quite logically, but there are reactions). I vehemently do not want an ambulance. Go ahead and time things, but as soon as I start signing at you the timer stops. If I'm doing the wandering thing, don't let me walk into traffic. But don't be abrupt about that, because, again, we'll both get hurt. No matter what you do, stay calm. Otherwise I'll freak out and not understand why. Keep your voice level-I may not understand the words, but I do pick up on emotional tone, & a tired and confused post-seizure period is way better than an upset and anxious one.

If it actually IS an emergency, well, that's why I wear a medicalert, but it almost never is.

Partial WHAT?

2010-11-05T00:29:00.000-07:00

The majority of my seizures are partial complex seizures. In my case, they live in the right temporal lobe. Left temporal lobe are more common, but I always did have to be difficult.

What that means is that a part of my temporal lobe says "hey, I'm bored! let's change it up!" and starts in with the unregulated activity. All of the unregulated discharges stay in the temporal lobe, rather than spreading to the entire brain (which causes generalized seizures, which are what most people think of when they hear the word "epilepsy").

Partial complex seizures can happen in any part of the brain, and each location looks different. Common seizure manifestations, depending on location, include hearing or seeing things that aren't there, random out of nowhere feelings and emotions, wandering, movements called automatisms (things like chewing air, lip smacking, picking at clothes), tingling in the extremities, and generally acting strange.

My seizures tend to involve language problems-no matter what is said to or around me, I respond with "I dunno". Apparently I sound disconnected, even by my standards. I stop what I'm doing, or half-ass keep going & chew on air and do...this THING...with my hands. Like my thumb and forefinger are drawing circles around each other. I do something very similar under stress, but not identical. Apparently there's a "lights are on, nobody's home" facial nonexpression going on, and if I was standing when it hit I tend to wander around aimlessly (as contrasted with after, but that's another post).

Everyone thinks of tonic clonic seizures as the real thing, but partial complex have caused me more problems. Police (and for that matter, pretty much everyone else) assume drugs rather than a medical issue if someone is standing there chewing on air and wandering vaguely with a vacant expression. That's just not the case. It's written on my medicalert, but who reads that? And since grabbing my arm is a good way to freak me out-even in a seizure, it's absolutely possible to trigger an automatic NO GO AWAY reaction-I live with the knowledge that something I cannot help may get me killed or injured at the hands of those who are supposed to help.

Since partial onset seizures are the most common, contrary to what Red Cross first aid training implies, that's kind of scary.

"What the hell was THAT?" "nng, seizure"

2010-11-04T10:52:00.000-07:00

This one'll probably be quick, easy, with very little swearing.

The first comment on my I-need-ideas post asked what my physical signs are before a seizure. I can do that! So, here it is. This is just what I know, because there are things apparently that other people can call out, but I don't know exactly what they are.

There's no warning before an absence seizure. They're really short, so I don't often notice them anyway. My eyeballs just roll up a little, eyelids flutter a bit, and I sometimes lose a little muscle tone. It kind of looks like I'm nodding and rolling my eyes.

Before a partial-complex there are some actual signs. For some reason I tend to have rapid fire absence seizures right before a partial complex-and this is completely neurologically backwards, but it's a consistent pattern. As soon as you point out to me that I'm having seizures, I will deny it heartily. I'm not sure if the quality or forcefulness of the denial is in any way related to the likelyhood of having another seizure, but it might be.

I lose a lot of facial expression before a seizure, sometimes my right hand starts shaking-I try to hold it still, because that totally helps, right?-and my eyes glaze a little bit. My speech changes, in that I stutter or just use very few words. I sign in a lot of environments and situations, but if I'm using sign to pull language and not really succeeding, I'm either really overwhelmed or on my way to seizureland.

The way I act changes too. There's this oh-god-oh-god-I-am-going-to-seize feeling, but by the time I get there I'm really spaced out, so the panic this incites isn't exactly effective panic. I get really passive and unable to make decisions beyond "yes or no", and sometimes even that is too complex. If I trust someone, right before a seizure I will pretty much take their advice or suggestions uncritically. That's nearly as unlike my usual me as it gets! If I know it's coming, I want to be away from people and sounds & do my best to make that happen.

Before a tonic-clonic seizure, I usually have a partial complex, & I only have them when subjected to multiple precipitating factors. Yay progress!

My in-case-of-seizure preferences are tonight or tomorrow. Riveting read, amirite?

What I Refuse to Sacrifice.

2010-11-03T22:21:00.000-07:00

There are things that it's not wise to do with epilepsy. Scuba diving comes to mind, and as much as I'd love to try it, the rationale for passing on it until a year of oh so elusive seizure freedom makes sense to me. I understand why the powers that be don't want me to drive. But other than that?

I did high level competitive gymnastics & tumbling and trampoline with epilepsy. I teach the sport, and hope that no child in my care feels held back or feared because of a condition. I social dance (I know, I'm autistic. It works for me. Just go with it, I'll explain some other time). I have friends, and refuse to isolate myself in case of seizures. I go places all alone on the bus and on the train and on planes and by foot. No one is my keeper, nor should they be. As much as the general medical model paternalistic society would rather I didn't, I cultivate my independent streak and display it proudly.

The philosophy "Live as though each day is your last, and plan as though you'll live forever" is kind of where I am with things. I'd rather take some risks now instead of never get to experience things. Some precautions (medicalert bracelet, fairly liberal disclosure, living with a roommate, forgoing scuba diving) are reasonable. But I can't and won't live wrapped in them.

I wonder if dispelling some of the fear and manufactured mystery about epilepsy would reduce the well meaning encouragement to completely avoid risks? Maybe I'll know in my lifetime.

Same Old Keynote, Wrong Crowd.

2010-11-02T23:39:00.000-07:00

So last month I went to the Autism Society of Oregon conference, which was theoretically on adult issues. Theoretically, I say.

Lee Grossman, president and CEO of ASA for about a zillion years, gave the same keynote he gives everywhere. Contrary to popular belief, I don't actually start the day angry, but damn, give me a big heaping pile of bullshit first thing in the morning and I'll get angry, and call you on it too.

So, this is an adult conference, right? He's been around at least a decade in ASA high up land, I know I'm not the only person to make very clear why his old schtick is unacceptable, or even the first. And you can imagine that at a conference supposedly focused on adult autism, there are going to be, like, adult autistics and people who recognize that autistic children grow into autistic adults, right?

The first thing that rubbed me wrong was before he even started. I guess I can forgive the puzzle ribbon, ish, but I cannot think of a single reason for the adorable age 10 and under poster children on the first slide. There are a whole lot of adult autistics. What's with the children?

Then he went into actually talking. The exactly one thing he said that I agree with is this: "the system is broken". It is. It is indeed broken. It spits us out at 18 or 21 and shoves us into the cracks.

Now, hey! Let's get onto why! Call on me call on me! Or call on Mr. CEO, as that's where the rest of the keynote went!

The whole thing was about how it's a family issue. "When one family member has autism, the whole family has autism". MY ASS. My autism is not about my parents or my siblings or my non autistic friends and extended family. It is my neurology. It is not theirs. No matter how much they listen to me, how much they try to understand, it is not about them. It's a lot easier to protect the martyr mentality when you insist it's about you, but that's just not how it is. As long as it's considered to be our parents' thing, though, the system will continue to be broken. We keep having to fight for ownership of our own experiences, and that's not right. It isn't even wrong. It's so backwards there is not yet an adjective for it.

And he was just getting started! After that we got the whole "vaccines are a likely cause of autism!" shoutout, we got the whole cure or nothing thing--fun fact! You can help people, you can help them a whole lot, without trying to "fix" them. Sick people need cures. All people have some sort of support needs. And while we're on the whole sick people thing, Mr. Grossman is guilty (again) of comparing autism to cancer & heart disease. I know quite a few people who've died of cancer. I know quite a few who died or will eventually die of heart disease. The only people who die of autism are the ones who are left to rot by the system and those who are killed by their parents. That isn't dying of autism, though. That's dying by a parent-centered system.

The real winner of the whole thing was the alarmist autism as a tragedy language. According to the Autism Society, people like me are:
-a tsunami
-a tidal wave
-a national emergency
-a crisis
-something to be combated.
Charming, am I right? Full of human dignity and respect of autistic personhood, huh? Yeah, I didn't think so either.

Then, because my irony meter wasn't broken enough, came the bit that would have been pretty awesome had he left out the middle hour or so of his 75 minute speech: a nod to civil rights and quality of life, employment and higher education, and how damn hireable we are.

What.

Yes, because what everyone and their dog knows about autism right now is that we are a violent earthquake or something, in large part because of the fearmongering rhetoric of Mr. Grossman and those in similar positions, employers are really going to be lining up to hire people who they know are autistic. Absolutely! That's how the world works, isn't it?

Oh. Wait. Back here in reality, prejudice wins.

If you really want to improve my quality of life, stoppit with the Tragedy Model of Disability. Stoppit with the alarmist language. Stop making it all about parents, professionals, everyone but autistic people. People high in the autism charity infrastructure who do these things are a bigger part of the problem than autism itself. Oh yes, I went there. It's just not about you, Mr. Grossman and counterparts.

It's about us.

I shouldn't have to beg

2010-11-02T20:52:00.000-07:00

I wrote this when I was having Issues with very basic "don't make me seize, 'k?" accommodations. It may be a bit wangsty. Please, give me some suggestions so I don't end up with a month of epilepsy wangst. As is my custom, there is swearing.

Institutionalized ableism becomes clear in a number of places and situations. Where it hits hardest, most gut-wrenchingly, is in asking for simple, by which I mean no-effort, accommodations and consideration for disabilities that aren't easily seen.

Yeah, I know, not having a strobe light everywhere is a fucking drag.I took up the hobbies I did because there shouldn't be any there. It doesn't matter that "you didn't know". A flashing light is a dangerous thing to have in this setting-people are moving in a number of directions fairly fast! No, I won't be nice or apologetic about stating my needs. It's my health vs your ego & your "but I dunwanna". Health wins. Access wins.

So many simple requests come down to need vs ego. Yeah, I know, your feelings are hurt that you aren't funny, you're actually kind of a douchebag, and I just don't have it in me to sugarcoat. I'm not going to. This isn't a preference here. This is a need. Were it just a preference, there'd be a lot less panic involved.

Yeah, panic. When you make me beg for a place to be relatively safe, safe as in non seizure inducing (and we all know I deal with audiogenic issues in my own way), it makes me panic. The power dynamic of begging means you can say no. It means that you, should you deign from your place of privilege to say yes, have a hold on me. And it's not like knowing who I have a crush on or the inane things I did when I was 10-it means you can revoke my ability to safely navigate a part of my world at any time, for any reason or none. A presumably public part of my world.

That's not how it should be. Access should be a right, not a privilege to be revoked at any time, to be whittled away for reasons and justifications that come down to "it's hard". Disabled personhood, epileptic personhood, autistic personhood is still personhood. My access matters just as much as the next person's.

I can't be silent on this as my world threatens to get narrower & narrower. I'm one of those uppity bad disabled people who won't stay silent and in my house. I don't know my place, you say. I defy notions of where my place is. My place is out here living my life to the fullest.

But the panic takes its toll. The seizures take their toll. The nastiness from others, that takes its toll too. By my mid 20s I've been threatened with a knife, I've had my skull bashed, and I've gotten more death threats than I care to count for the crime of wanting a life-an accessable life. If I'm abrasive about my needs, certainly nothing justifies assault with a deadly weapon, when I was 19 or now.

Stop narrowing my world. You won't even miss the flashies. You won't even notice other access features I or other people ask for. You may find they make your life easier too. You may find your world widened. But everyone suffers from the culture of silence and exclusion.

Epilepsy awareness month!

2010-11-02T00:24:00.001-07:00

November is epilepsy awareness month.

I'm not so big on awarenessitis, but seeing as no one I know really knows squat about seizures, I'm going to try a few things.

For some background, I've got partial complex, absence, and occasionally generalized motor seizures. Primarily the partials live in my right temporal lobe, & they're classified as medically refractory.

I've been on a number of medications, I'm not a candidate for cortical resection, and VNS is something that I'd like to explore, maybe, but I'm actually pretty happy with what I take now.

So, what I am doing for Epilepsy Month is:

a) Posting something at least vaguely related every day. It may be something I wrote after having a bad day or misunderstandings, it may be 101 info, it may be a "ha ha, listen to this ridiculous thing I did postictally! Epilepsy is serious, but I don't have to be" kind of thing.

b) Tweeting at least one fact-thing a day (I have way more non neurodiversity type followers than readers).

and

c) making 101-110 level fliers and handing them out. Everywhere. ESPECIALLY places where I interact with people.

But I need your, yes your, help! I'm at the point where I don't remember what's 101 info and what's eyeballs-glazing-over technical. Or what questions people have. So leave 'em in the comments! Please? Otherwise I'm going to end up with a month of BAAAAAAAAAAAAAAAWWWWWWWWWW PEOPLE ARE WEIRD ABOUT EPILEPSY! posts and really awful fliers. That'd be tragic, right?

Postictal Stream of Consciousness

2010-11-01T21:29:00.000-07:00

**I wrote this when I woke up with a BAAAD seizure hangover. The thought process isn't quite so languagey, but this is how it translates to words. The swearing is about accurate.*

Ohmigod, what is that sound? So loud, it hurts.

Oh. It's the cat purring.

Go 'way, blankets. Scratchy. Someone turn off the sun. My eyes, I'm gunna claw them outta my head.

Shitfuck. Moved. Ow to the 10th power. Head wants to split open. Brain too big, trying to expand, leaking outta my ears. S'wrong with my arm? Tingles. Huh.

So tiiiiiiired. Did I walk 'round the state in my sleep? No, sleepytired, drugged tired not exertion tired.

Why can't I talk? Damnandahalf. Phone ringing. "hng?" Gibberish comes through. "eh. feh." Click.

Water. Signing it makes it come, right? No? My hands swear again. Sleep? More sleep? Please? No. Have work.

What happened? S'11 AM. Think. Brain hurts. Big black memory hole. What'd I do yesterday? What's today? Oh. I always do the same thing yesterday.

Cast about through the cottonhead for details. Hadda coffee. Ok, 24 hours ago. Need more. Took a bus, OK 21 hours ago. Ummmm ate...ice cream? 19 hours ago. Changed shirts....16 hours ago, Anything else? No? Just a headache? Just fatigue like climbing out of an ocean of tranquilizers?

Shower. Coffee. Can talk now. Dunwanna. Lurch around, foggy. Maybe ok tomorrow, maybe not.

Fuck seizures.

I'm on your kid's side too

2010-11-01T21:12:00.001-07:00

No, really, I am. That's why I do what I do. The harsh reality is that your kid is going to grow up to be more like me than like you, no matter what you do to change that.

There are a few ways of dealing with this. One is to ignore it & to devalue what we do with any or all of the tactics out of Derailing For Dummies. One is to insist that your child will be like you through some cure. When this inevitably doesn't happen, the legacy of failure will haunt your child forever. Or, you can accept this truth & work with autistic advocates.

Our idea of the future we want for your kids-and for ours, and for ourselves- isn't what you seem to think. I'm all for helping your child's sensory issues, helping him develop job skills, giving her an easily recognized mode of communication. None of this things seeks to change who we fundamentally are.

What I fight for is a world where your child is seen as whole as she is, not as a mistake or sick or broken. I am fighting for a world where the tragedy model of autism is a think of the past, where inflammatory terms such as "autism tsunami" are seen in the same light as racial slurs. I'm fighting for a world where people are accepted and expected to be the best them they can be, instead of pruned into a false normalcy.

That is what I want for your child. THat is what I want for all people. So yes, I am on your child's side. For his sake, I hope you are too.

Inaugural Post: Autistics Speak Day

2010-11-01T19:57:00.000-07:00

I believe AEIOU had the best of intentions. I really do.

The road to hell, however, is paved with said good intentions. Good intentions are behind many, if not most, efforts "on behalf of" a group that's frequently othered. Autistics in many way are the ultimate other--our nonverbal cues are different, our use of language is often different, our sensory processing is different and often inconsistent, we look like everyone else and yet are so fundamentally NOT that many of us are pretty squarely in the uncanny valley. People just don't know what to think of us, but they don't see us as 'same' enough to just ask us.

As an autistic, I implore you: Ask us what we want. Ask us what we need. Ask us what it is to be us. I can't answer "what's it like to be autistic", because I have been nothing else, but I can tell you what I am experiencing. I can tell you that I cannot tell the difference between pain and nausea consistently, I can tell you that I discovered dizziness recently and it fills me with as much joy as flying, I can tell you what my eyes see when I look where you're looking, I can tell you what your words mean to me.

I can tell you what it is to be constantly regarded as broken. I can tell you what general society does to reinforce this. I can tell you what it feels like to be assumed incompetent in areas where I am brilliant, and I can tell you what it feels like to be assumed brilliant in areas in which I am completely incompetent. I can tell you what your assumptions do to me. I may not get the hidden meanings you are intending, but I can tell you what hidden messages you reveal.

I can tell you what it means when I stare at the lights. I can tell you what it means when I jump up and down. I can tell you what that squeal meant. I can tell you why I sat down in the middle of the street. I can tell you what my behavior means. I can tell you that all that behavior, it's communication of some kind. It all has meaning.

And I can tell you absolutely that my communication issues are not just a failure on my side. Communication is a process in which people both send and receive messages. I send messages. I send a lot of messages. They may not all be in your language of saying one thing and meaning something else as indicated by body language and tone of voice, but I send messages. Even when I'm so postictal I do not remember where I am or how I got there, I am sending messages and trying to receive yours. Even when I am so fried that words just aren't happening, there are messages.

The message that the communication shutdown and similar initiatives gives me is one of profound misunderstanding of what it is to be in my brain and brains like mine. Initiatives like that say to me that they believe the communication issue is all my problem. But it isn't. Not speaking isn't the same as not listening. Not speaking isn't the same as not communicating.

If you really want to know what it is to be autistic, don't take a break from Farmville. No one even cares about Farmville. Ask an autistic specific questions about what it is to be us. Spend a day having everything you say challenged because you aren't the right kind of...something to matter. Spend a day experiencing outside of the box.

Instead of shutting off communication, open up the lines with an autistic. Receive our messages instead of assuming. That's way more for autistics than a facebook charity app ever could be.