BADD 2011. The fights we fight

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

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

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

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

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

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

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

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

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

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

Some reflections on Autism Miseducation Month

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

Thank $DIETY it's over.

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

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

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

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

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

Being Autistic Is...

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

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

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

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

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

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


DON'T SAY: "Are you sure?"

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


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

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


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

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


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

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


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

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


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

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


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

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


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

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


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

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


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

SAY: "What an ableist turdbucket. Ew."


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

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


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

SAY: "That shit irritates me too."


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

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


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

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


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

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


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

SAY: "Pizza, burgers, or burritos?"


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

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


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

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


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

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


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

SAY: "You are pretty fantastic."


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

SAY: "Eliminating you would be a tragedy."

"What Would Meeting You Halfway Be?"

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

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

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

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

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

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

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

More Consequences of Awareness

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

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

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

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

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

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

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

"Unclip."

"uh, what"

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

"...what"

Blah blah unsafe blah blah not concentrating blah blah frustrated.

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

"Unclip & we can have a discussion"

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

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

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

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

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

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

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

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

Why I am ritually burning my favorite shirt.

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

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

So why am I burning it?

Autism Speaks, that's why.

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

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

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

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

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

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

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

Wish granted. Not another dime.

Be aware of THIS

This was my 2008 Autism Awareness Month post.

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

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

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

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

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

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

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

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

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

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

Alternative Autism Awareness

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

Autism Awareness Month?

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

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

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

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

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

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

Loving Lamposts

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

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

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

Why?

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

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

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

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

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

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