Classic Neurodivergence: The Cancer Comparison. AGAIN.

 This is a new thing I'm doing, where I go back through my previous blog & post shit that is still relevant in its original form. I don't have the spoons to spit out content all the time, & some stuff I have been saying for way. too. long.

Original publication date of this one? May 9, 2006. Almost exactly 7 years ago.

"Like cancer, autism is probably many diseases with many causes". (Time, May 8 2006)

Mkay. I have a few problems with that statement. First, I do not have a disease. Second, the comparison is crap. Not the "many causes" part-the part where they put a neurological difference in the same realm as a deadly disease. It's also disrespectful, but I'll get to that after the bit about suggesting alternatives to the c-word.

For all journalists writing about autism: here is a list of conditions that are much more similar in cause and how much they can screw up your life (i.e. none of them are intrinsically deadly, though a lot of people have been killed for being autistic and for some of these other conditions too):
migraines
epilepsy
depression
ADHD
bipolar
motor difficulties (fine & gross, includes mobility)
arthritis
genius
mental retardation
learning disabilities
and probably many many others. Things that don't cause death. This list is not exhaustive.

Now, why I feel the autism/cancer comparison is disrespectful. First, it's disrespectful to autistic people. We don't have something growing in us attempting to kill us. We don't have a "devastating disease" which, let's face it, cancer usually is. We don't require painful chemotherapy to stay alive. The cancer comparison is nothing but lazy writing and a way to promote funding to people trying to get rid of us.

You know who else it disrespects? People affected by cancer. Ask anyone who lost a child to cancer-they'd have that child back, autistic, cognitively challenged, it wouldn't matter. Their child would be changed (in some cases almost to someone not the kid they remembered) but they would have their baby back. Ask anyone going through chemotherapy if there's anything worse than this. Hell no. Cancer is expensive, cancer is exhausting, and cancer KILLS. Give the families a little respect. Give the people who actually HAVE cancer a little respect.

Is it really that hard to respect autistics? And families dealing with cancer? Or are we just having a vocabulary failure by all our journalists at once? Regardless of the cause, time to fix it. Get Google Health (it's the handy directory). And an apology wouldn't be overdoing it either.

The Mothers On A Mission for Hysteria* do this too, but asking reasonable comparisons of them just gets you physically attacked. We can expect, request, and even get journalists to change. Extremists, they don't. They aren't worth my effort.

*note from the future: I would no longer use the word "hysteria", instead go with "irrational fear" or somesuch. But unaltered content is unaltered.

Kickin it Old School for BADD 2013

I don't have the spoons to put together a new post for BADD, and it's late in the day, really late in the day.

But I've been doing BADD since, um, forever. My old blog where I started doing it is no longer available to anyone but me. So here is a vintage post that still applies way too much.

From 2010: "The Little Things. They Add Up. Stoppit" (or, microaggressions, but I didn't know that word then).

Those little things your attitudes about people like me, about what people like me, about what those other disabled people are like, that lead you to do things for me, for other people like me, to say things that you think are complementary comparisons to me. They aren't compliments. They aren't favors. They're symptoms of ableism. They make me uncomfortable. That silence isn't assent. It isn't consent. It's me not knowing how to stand up for me and my community through the constant fog of hurtful, mislead attitudes.

Please don't tell me I seem normal-just-weird. I don't. I am not. If all the calculations my brain did to look what you call normal-just-weird were printed out, I'd slaughter a rainforest in a week. It's exhausting. I don't even want to be normal. It's erasing who I am to say I'm almost a shallow imitation of something I don't wish to be. The workarounds are to make my life easier--it's a choice between doing them & having the life and appearance I do now, and not doing them and I don't even know, I've been doing them for so long. Yes, I know when I describe how I understand speech it sounds like a lot of work. It IS a lot of work. That's how my brain works. I can't tell if you're trying to understand, or trying to tell me I Am Doing It Wrong. Don't tell me I Am Doing It Wrong. It's been my brain for a long time.

Don't tell me things aren't or weren't that bad. That surely I am or was exaggerating. I hate awareness for this. I hate "kids will be kids" for this. I hate the culture of the sainted martyr parents for this. Fuck you with a rake, it can be, was, and the global situation absolutely is that bad. I have a pretty awesome life right now, yes. I'm delighted you think I am fantastic and well adjusted and I quite agree. That doesn't mean that the situation at large, childhood, adolescence, earlier adulthood weren't absolute rainstorms of shit.

Don't fucking call me an inspiration either. My name had best not be in the same sentence as that word if you wish to remain friends. I'm not an inspiration. I'm a person. Cliffs and waves and sunsets inspire. I'm just stubborn and wish to live my life as I see fit. That's not inspiring when you do it, and it isn't inspiring when I do it either.

Medical professionals: don't talk to be like I'm an adult before you notice my medicalert and like I'm 5 after. Nowhere on there does it say "words of one syllable". It tells you things that effect how I communicate and can kill me. Like when you stabbed me three times and I started shaking and not being able to focus, that didn't mean talk to me like a toddler, it meant go get some prednisone. Just so you know. If you don't know what adrenal insufficiency is, you could have asked.

People in general, stop assuming my friends aren't really my friends. They are. It's not some great act of charity to hang out with me and stuff. Nor are they there to translate Real Human to Kassianese. I may not look at you. I still LISTEN. I can probably hear you further away than you'd ever consider thinking about. I like to think that as really real grownups people can, in fact, get past the whole different body language thing. ZOMG PEOPLE ARE DIFFERENT.

Also. Please stop condescending to me about my job. I like it. You don't have to do it. I do it. I love what I do. I choose to do it because I am good at it. Yes, it is a real job. No, it isn't volunteer, people are actually paid to do what I do. You have to get certified and everything! Yes, it is my real job. And yes, I could do other real jobs, but I like mine and there is nothing wrong with that.

I do not want to be miraculously cured...no, making baby steps towards access is not, in fact, doing me a favor, but being decent and babysteps towards following the ADA...

Annnd in spite of all your ableism fail, humans I know, I actually really do like you. It hits me in the gut every time you do this stuff, because it seems out of place, what with the whole treating me like a human being thing. Stoppit already.


 

Rhapsody is a Kitty & He Needs Help.

This is Rhapsody:

I met Rhapsody at Autreat last summer-he was there in training as a service kitty, along with his littermate. I hit my wall very suddenly & unexpectedly and was crying about missing my cat & wanting to go home to my cat, & Rhapsody's human, Jim Sinclair brought *a* cat--Rhapsody. And Rhapsody allowed me to cuddle him while kind of crying so hard I was shaking and it's totally not a cat's favorite at all, to be loved on by someone melting down, right? But he cuddled and purred and probably saved my next 12-24 hours.

Well, now Rhapsody needs help. He's been having scary episodes of respiratory distress and has spent time in the kitty ER. The kitty ER, like the human ER, is both expensive and for stabilization purposes only. In order to figure out exactly what is wrong and to treat it, Rhapsody needs an alveolar wash. And he needs it as soon as possible-without it, there is no knowing what is wrong, and the respiratory crises are scary and one could be fatal.

And this, my friends, other readers, cat lovers, is where you come in:

If you can afford to donate, follow the instructions in this facebook note.


It is very important that you mark that it is for Rhapsody. Otherwise the funds go into a general fund, which is a worthy cause but will not go to this particular worthy cause.

Please 'like' Moosepuppy Animal Rescue and share, as well as the event 24 hour fundraising push for Rhapsody. And share share share.

Tweet, tumbl, facebook, please spread the word. I know that for many of you disposable income is not a thing-but someone in your network might be able to help.

Purkinje & GABA are hoping Rhapsody gets the treatment he needs:

Guest blog-Smother Autism? Are you fucking serious?

This is a guest blog from occasional contributer Gen Eric. I lend my blog sometimes as a platform for other Autistics to say things that need to be said and heard. I appreciate Gen Eric writing on such a triggering topic, so that I do not have to.

 

TW for abuse, ableism, murder, behaviorism

http://www.huffingtonpost.com/2013/04/01/illegal-petes-launches-sm_n_2992080.html?utm_hp_ref=denver

A Colorado-based Mexican Restaurant is asking it's customers to help “smother autism.” No, you did not fucking read that wrong. “Illegal Pete's” promises to donate a dollar for every “smothered burrito”(apparently this is a Colorado thing) purchased this April to the Joshua School, an ABA facility. We will leave aside for this post the racism of the name, and get down to celebrating the cruelest month in style.

The school's website www.joshuaschool.org reveals a pretty standard-issue ABA program. That in and of itself is harder to criticize without more knowledge: partially because the terms they use are almost scarily vague; and partially because ABA is the Borg of autism “treatments,” assimilating anything that can be called teaching or therapy under its own heading. Like all ABA practitioners they have their cultlike zeal for terms like “evidence based” and “clinically proven,” but if you want a proper thorough takedown of ABA, read The Misbehaviour of Behaviourists by Michelle Dawson. It does seem like their near-exclusive focus on normalization at Joshua School is depriving their students of any kind of actual education (you know, that thing schools are supposed to provide), and their site also talks about “children age 6-21,” making it clear that they see grown godfuckingdamned adults as children by virtue of their disability.

I don't know how many of you attended vigils for Autistic and otherwise-disabled people murdered by parents and caregivers, but it's a lot. And it seems like one of the most jolly-fucking-common ways to do it is smothering. Autistics are smothered all the time: at home; in institutions; in schools. Hell, I came dangerously close to being one of them, and if I hadn't been able to make out the words “I can't fucking breathe you asshole,” I might not be here today (a simple “I can't breathe” was ignored). In case you were wondering, our killers typically get off with, at most, a slap on the wrist. The language of combat/war/attacking/killing/smothering autism absotively posilutely emboldens the next would-be murderer.

When confronted about this, Illegal Pete's will go on and on about their “good intentions.” Yeah, not fucking good enough, road to hell and all that lovely shit. Raising money, even if this was a good cause (which it does not seem to be), would still not justify a title that belittles actual abuse and murder of our people. And raising the all-holy “awareness” is not only unproductive but counterproductive for our actual interests. In case you were living on another planet for the past few decades, awareness kills, and every time you raise awareness of how horrible our neurology is, and how we are evil changelings that stole someone's real child, you make the world that much more dangerous for us. And if that wasn't your intent, and you really weren't aware that “smothering autism” is one of the most problematic things you could ever say (even though The Google is totes a thing), the only appropriate response when confronted about it is “oh shit, we didn't know, let's fix it.”

Autistics get smothered on a regular basis, and making an event title that belittles it in that way (and don't even mention your intentions; your explanation is heard and rejected) is unfuckingacceptable.

Tone It Down Taupe this April!

As we all know, April is Autism Awareness Month, the month of Light It Up Blue! and alarmist rhetoric 'for autism'. In the spirit of this, Judy Endow posted this picture:

[image is a white box with an arrow pointing to the upper left hand corner. Text reads "I heart someone lacking autism"]

What followed was a discussion of how we need awareness of those who lack autism and how different their experiences are. A man who lacks autism thanked us for acknowledging his plight and requested more awareness. We need ribbons. We need a walk. Lia suggested we

TONE IT DOWN TAUPE

for those lacking autism.

About the ribbon:

It is taupe (or tan. Or beige. A non offensive, non obtrusive color) to symbolize the toned-down sensory and emotional experiences of those lacking autism.

[img is a standard rectangular pin back attached to a beige ribbon]

The eyes represent the incessant demands for eye contact from people lacking autism.

The large size represents the size of the epidemic. 49 in 50 people lack autism! Help us find a cause! Help us develop more effective therapies! Help us integrate those lacking autism into a functional society with autistic people!

This campaign, while sounding a bit silly, is also a bit serious. Tone it down. Tone down the fear rhetoric. Tone down the alarmism. It is not necessary to light anything blue to show support and love for an autistic individual-that can be accomplished by, well, actually supporting autistic people. This is an opportunity to actually raise awareness and educate people: when they ask what that giant ribbon is for, we can explain why we are toning it down taupe, that fear rhetoric hurts real people, and that what autistic people want is not to be fixed, not to be prevented, but to be given the supports we need to be part of society. It's a way to make people think.

Would you like to Tone It Down Taupe with your very own ribbon? Lia has been making some and made a tutorial for those of us capable of making our own:

You will need:

-Taupe/beige/tan ribbon. Something neutral. The ribbon in the pictures is 1" wide.

-Scissors

-A ruler (if you want precise measurements)

-Googly eyes

-A pin back, or a button if a pin back isn't something you can make work

-A hot glue gun with glue

1. Cut a length of ribbon. For a large one like we are making here, cut 11". Cut the ends to points.

[img is an 11" length of beige ribbon stretched next to a ruler]

2. Fold the ribbon into a big "awareness" loop. Ours here is about 1.5" between the points. Play with the ribbon & make a shape that you find pleasing.

[img is the same beige ribbon crossed over itself into a large loop, awareness ribbon style, next to a ruler]

3. Then hot glue it into place where the ribbon crosses itself. Our ribbon crossed itself 3" from the end. Allow to cool & dry.

[img is a closeup of a beige ribbon next to a ruler. There is a dot of hot glue on the ribbon at the 3" mark]

4. Place 2 dots of hot glue where the ribbon crosses itself. These are for the googly eyes-have them ready!

[img is a closeup of a beige ribbon in an awareness loop. There are 2 dots of hot glue where it crosses itself]

5. Press googly eyes into the hot glue dots you just made. Again, allow to cool and dry.

[img is a closeup of a beige ribbon in an awareness loop. There are 2 googly eyes where it crosses itself]

6. Find the pinback or button you are going to use. Put hot glue on it.

[img is a standard rectangular pinback with hot glue on it]

7. Press the pinback or button or what have you onto the back of the ribbon in whatever direction is most useful for you.  Ours is horizontal, but the ribbon is large enough for the same pin back to be vertical as well. A small button will also fit. Allow to dry.

[img is a standard rectangular pin back attached to a beige ribbon]

8. TONE IT DOWN TAUPE! 

[img is beige ribbon with googly eyes, attached to a rectangular pin back]

If you would like to Tone It Down Taupe, but do not have the spoons or other skills to make your own, Lia has graciously offered to make them & send them out. Email her at krystinesha (at) gmail (dot) com and she will set you right up.

with thanks to Lia  and Judy Endow for the brainstorming, and Lia for the craftery as well

You don't get to do that here.

In response to able people behaving badly, I'm going to clarify some things about how it does-or more accurately, how it doesn't-work around here. You might get to beat people over the head with your privilege everywhere else, but around here, that does not fly. Here, I am the baseline for normal, and the views and safety of me and mine are paramount. Let's look at what that means.

So you can waltz in here. Or prance. Or skip. Or roll. I really don't care what means of locomotion you use. But after you get here?

-You may not demand a free education. This is not a 101 level blog. Clearly  you  have internet. Google your questions. Otherwise everything I tell you is at my whim. My tutoring rate starts at $20/hour and goes up from there, depending on subject and difficulty dealing with the client. If you want guaranteed 1 on 1 education, you can pay for it.

-You really may not demand a free education in the tone you want it in. Absolutely not. Shit, even if you're paying for it I snark and swear. My first language model is a snarker & I am echolalic as fuck. That's just how I talk. Suck it up, buttercup. My blog, my words, my rules.

-You may not make any demands whatsoever about tone or "civility". That is a silencing tactic. No silencing tactics in my house. If you do not have a real argument, then you don't have to say anything. "You are angry and mean and swearing!" is not news, nor is it a bad thing. You'd be angry too. "Civility" is the last refuge of the privileged when they're scared that they're losing their privilege, and I don't think you need to have all that special treatment.

-You may not be the language police (this is a corollary of the above). I know I have a potty mouth. I don't care. I know many of my commenters can articulately swear. You don't get to decide that we don't have to swear just because we can put words together pretty. That's both an access issue and another flight to privileged bullshit. I will not have it.

-Your ableist shit? It will not fly. I intend to write more about this later, but refusing to acknowledge someone's access needs is every bit as ableist as slurs or talking to someone like they're 4. Don't fucking do that. If someone has an access need & you refuse to abide by it, & they misunderstand you or whatever, you don't get to cry about it. You fucked up.

-Defending ableist shit? Also will not fly. Even giving the impression that you are defending ableist shit will not fly. So if you're "misunderstood" because you're ignoring access needs and look like you're defending ableist garbage? That's kind of your problem.

-Corollary: The devil doesn't need any advocates. If you're "playing devil's advocate" and defending ableist shit, I am inclined to believe that at least part of you believes the trash you are spewing.

-Ultimately moderating decisions are mine alone. If you're doing any of the above things, I'll probably let it through, because I do think the world needs to see what shitheaded crap I deal with on a daily basis-but I will not shield you from much that other people respond with. Just about the only things that I don't let through are dox dropping and detailed 'go kill yourself'-especially when I am out of spoons from dealing with able folks behaving badly.

-Do not put words in my mouth. I will swear. I will say your behavior is shitty, ableist, and fractally wrong. It is very rare indeed that I call a person any one thing. If I tell you to fuck off, it will be in those words. And especially do not do this and then get all whiny that I summarize you. Do not be a fucking hypocrite (see? There's me calling people a thing. Enjoy.)

-Here, you are not the arbiter of acceptable. I am. You follow my social conventions here. You may swear. You may not be oppressive. It's really that simple.

Autistic people are...strong

This is a post for the flashblog in response to google's autofill suggestions to complete the query "autistic people are". Clearly they need some better ideas, since what is there now is offensive and horrific.

You know the saying "what doesn't kill you makes you stronger"? Well, if that's true (which I will debate another time), autistic people are the baddest asses around.

Autistic people are born into a world that doesn't want us. Even if we don't have a diagnosis, we know from a very early age that who we are is not who those around us want us to be.

If we are not diagnosed, we go through torture, only they call it bullying and say if we don't want to be bullied we'll act normal. If we are diagnosed, we go through torture, only they call it therapy, and say it is to help us act normal.

And yet here we are. Here we are standing strong, together, saying we are people, we are worthy as we are, and we do not deserve to be hated just for being.

Autistic people are strong. We endure. We are resilient. We may take damage, yet here we stand, even so. We may have come through bruised and broken, but still we stand, and still we stand fighting.

Because we are strong.

We are so strong, that here we stand together against google and against a huge majority-we're only 1 in 88, after all, and many of our number old enough to have blogs don't know the word "autism" applies to them, or they don't have access to computers because of poverty or because they live in institutions. So here we stand, a tiny minority of the population, with precious few allies who belong to the majority, saying "you need to stop this".

Because we, Autistic people, are incredibly, amazingly, strong.