Sunday, December 25, 2011

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

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.


Thursday, December 22, 2011

Doctor Season.

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.

Tuesday, December 6, 2011

Why I am So Hard On Allies

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.

Thursday, November 24, 2011

Since I couldn't livetweet it

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 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.

Friday, November 4, 2011

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

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.

Monday, October 31, 2011

Autistics Speaking Day: For the People Who Speak With Me

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).

Thursday, October 27, 2011

Advocacy: Everyone Can Do It.

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.


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....

Monday, October 24, 2011

Just Don't Use That Word.

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.


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.

Saturday, October 22, 2011

For the billionth time: I DON'T HATE PARENTS

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.

Thursday, October 20, 2011

Both of these things are GABA!

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.

Friday, October 14, 2011

"Just be NIIIICE": Argument from tone is BS

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.

Tuesday, October 11, 2011

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

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.


-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.

Friday, October 7, 2011

Geek Girl Con!

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

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.

Monday, October 3, 2011

Some things shift. Some don't.

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.

Saturday, September 24, 2011

On The Dialogues & The Accompanying TwitterGate

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.

Friday, September 23, 2011

"Dialogue", Disillusionment, Disheartening

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.

Thursday, September 22, 2011

Crabbier Than Usual

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.


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?

Wednesday, September 21, 2011

They taught me to not opine.

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.

Tuesday, September 20, 2011

A disclaimer I am no longer making.

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

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.

Sunday, September 18, 2011

Existential Guilt.

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.

Tuesday, September 13, 2011

Time for me to learn to cook

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!

Saturday, September 3, 2011

'Overcoming' Is Not a Moral Obligation

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.

Thursday, August 25, 2011

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

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".

Friday, August 19, 2011

To the Girl in Missouri Who Was Attacked At School

**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

Wednesday, August 17, 2011

We Aren't Here to be Your "Resource"

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.

Monday, August 15, 2011

And Then I Land In the ER Again...

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!

Wednesday, August 10, 2011

New Project

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!

Monday, August 8, 2011

Body policing & erasure & such

-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).

Wednesday, July 20, 2011

Does this exist?

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.*

Sunday, July 10, 2011

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

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.

Saturday, June 25, 2011

Parents of autistic kids are bullies.

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.

Saturday, June 18, 2011

Autistic Pride Day

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.

Tuesday, May 24, 2011


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.


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!)

Saturday, May 21, 2011

I don't have autism. I am autistic.

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.

Thursday, May 19, 2011

Cure is an inane concept.

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.