Saving Oneself

This is sort of a response post on a couple blog posts that I read recently.

Being disillusioned is rather painful. Nothing quite like having the wool over your eyes and rug pulled out from under you. For me that is what happened as an activist. I found out one day, I wasn’t as amazing I as I thought I was and out of frustration and disappointment, I lost myself in burn out and apathy. I guess this is a word of warning to my brothers and sisters who are disability activists. Fighting the fight for rights and inclusion, for equal status and for remaining human; it’s pretty much an uphill battle, and one that doesn’t seem to have a real outcome. So it’s why I felt like writing this, because I need to make something clear.

I am not a hero for being an activist. I didn’t go into this for heroics.

But I guess I need to explain why I went into activism and why burn out and being jaded can be so easy.

I guess what started as a venture in community turned out to be a romp through social-ethics and identity politics. I didn’t plan to be an activist, to write blog posts, to go to senators, to talk at summits to march at protests. It wasn’t in my purview. Yet I manage to do all those things and I loved it, because I had the image in my mind that I was boldly doing great things, for everyone, that I was changing the world. That I was…being a hero.  That my friend was the first step on the road of a cliff into the hell of burn-out.

First, I didn’t pace myself. I threw on more projects, I tacked on more lectures I talked to everyone educated everyone with no chance for myself to breath. I got tired easy, but I kept soldiering on. Because I told myself I was making a difference. I never knew I was burning the wick at both ends that I was getting more and more exhausted and overwhelmed and that protesting publicly was traumatic. I just kept working, kept trucking along with my normal job and drowned myself in policy and social-commentary. I kept thinking that progress was happening that I was doing a good thing.

But I wasn’t watching where I was going, and I burst into flames. Jaded cynicism and apathy seem to ooze out of wreckage that was me a year ago. I wrote about it on my blog, I commented on it and I left activism I was done with the verbal abuse from parents. I was done with the public backlash; I was done with ASAN abandoning my pale pagan ass out to dry. I just had it. So when the smoke cleared I was left with a pretty real result.

I wasn’t saving anyone, I wasn’t anyone’s hero. I was a train wreck that everyone watched burn.

You don’t go into activism to be a hero, you may change and impact people, you might start a chain of events that will eventually change a law or a social belief. But it never happens quickly and there is more dead-ends and road blocks than breakthroughs. You will find out that people that you loved and were loyal to you, will stab you in the back. You will find out that people you respected turn out to be monsters. You will go up hill and fall down like Sisyphus. Everything will become a pain, a chore and startling example of human hivemind and group think. You will start to hate it. Activism is often thankless and void of gratitude. But an activist knows this, and still presses on. It with this wisdom that I realized I am only a hero for myself. That I need to take care of my needs before everyone elses.  I have to see where I am in the scope of things, where I am going and if my goals match what I am trying to do with my life personally. I got to step back, and take care of myself before I burn again.

Now at round too, with disability activism, I am better prepared, I am not a hero for trying to get back on the saddle. Just a human being who wants more, who seeks the better of people, I don’t want to save anyone anymore. Just myself.  

On Notions of Rats and Cats

Just an notice, I know I have been very neglectful with my blog. It's not quiet dead...but I have been less than interested in posting. Tikaani misses everyone and says he's sorry that he doesn't feel like playing with folks.


Onwards...

It’s twenty passed nine and after making breakfast and coffee to start my week of constant repetition, I hear the sound of ‘clikclikclik’ nearby. My two young male rats (called bucks) are thirsty and I just filled their water-bottle with fresh clean filtered water. Dodger being the more inquisitive one sits on the water-bottle surveying the living room from the cage. Fagin his brother prefers to doze in the hammock or in the blanket nest that they made. Watching them play, investigate talk to each other in high-pitched noises that I can’t hear, I think about why I love rats and why I felt a need to write this essay.

Autistics tend to be required to have certain attachment to things. It’s a sort of litmus test to prove to that we are not some sort of organic machine but a real flesh and human being. In some ironic way I wonder if this behavior is what leads to the empathy tests in Blade Runner to find Replicas. If autistics like Thomas the Tank Engine and Lighting McQueen then they are read as ‘normal autists’ it’s expected of us to like machines with faces for some reason. To empathize with them before we start with bigger and better things, I liked Thomas, but I wasn’t obsessed with it as some autistics do, I prefer Teenage Mutant Ninja Turtles, especially Master Splinter when I was four and five. That was my first special interest. I wanted action figures and outfits and bed-sheets. I had a love for stories, connections and crime fighting I wanted more than talking trains. I wanted more than what was expected of me to be a good and proper autist. 

This doesn’t go away once you’re an adult; now you’re expected of have the right sort of sensory issues, the right sort of special obsessions, to be a virgin, de-sexed and naïve but brilliant. To be a “Gary” from Alphas or “Sheldon” from Big Bang Theory, if you not any of these you’re considered ‘atypical’ at best, or ‘poser’ at the worst. I have been in this conundrum before. Be accused that I am not what I said I am and so forth I don’t look at it with any sort of anger, just confusion. Suddenly everyone is an armchair neuro-scientist. Out of all the expectations I have to carry, one seems to grate on me. It’s one that many autistics have in common and share, yet I don’t seem to fit that stereotype.

You hear it from autists, you see it on webpages. “This is a cat, not a defective dog, this it’s happy being a cat”. There is even a book called “All Cats of Aspergers” that even continues this idea that autistics are like house cats. Autistics are routinely compared to cats; in fact most autistics I have met love cats and talk about them all the time. It’s almost expected of me by other autists than neurotypicals that I should have a hoard of cats and being devoting myself to loving them. Don’t get me wrong. I like cats just fine. My mother has two males at home, Garfield and Andy and I love them both. I was severely attached to our female cat Jade before we had to find a better home for her. Still though, I am not a ailurophile, I don’t have a bunch of cats in my apartment and even though Josh likes them I don’t have big interest in getting one (though, we have considered adopting one, right now it’s not possible with the boys). I am perfectly happy with my curious loving bucks who make me grin every time I see them scuffle, scamper and learn new tricks with me. I have nothing against autists that have and love cats; Josh my partner has interest in them and even acts on occasion like a big lazy ginger tom. 

Yet for some reason the idea that we should be compared to a domesticated animal unnerves me. For some reason it’s appropriate to put us on the same platform as animal that wholly dependent on people. Cats are not as independent as most people think. Looking at it for what it is, it feels like it’s another metaphor that autists need allistics to take care of them. I know most people don’t think like that, but I see that perception. But let’s look at how we raise cats. We declaw them, force them in house for their safety, neuter and spay them and we should. They are cats, they don’t have agency like people do, I believe in being a responsible pet owner. I don’t castrate my males as they are brothers and it’s going be a same sex cage, but if they get too violent I will be responsible. Since autistics everywhere are fighting against compliancy and patronistic ideals of the neurotypical majority; I find it almost ironic that many identify with cats and are quiet content with being compared to a house pet. If folks choose to use a cat as metaphor for their state of being, then by all means more power to you. But as for me, I don’t see myself as laid back cat that enjoys cream and fish. 

I am investigative, too smart for my own good and have an insatiable appetite. In many ways, I am like a rat. Curious, bright, active and finding comfort with my own kind, I am social and adventurous, a lover of new things and things to explore. In many ways I throw a lot of the stereotypes of a typical autist out the window. Despite the phrase, ‘if you have met one autist, then you have met one autist,’ people don’t seem to follow it very well, including other autists. We make comparisons and we gage each other, there has been pissing contests among autistics on who is more ‘autie’ than thou. Parents to it every day picking out what traits that their child has are ‘clearly’ autistic traits. Thus using it as measuring stick against other autistics. It’s clear that in the spectrum of thing that there are other things I should fixate on. Yet why are we painting ourselves with the idea that we should be tame pets, and why are those traits that make us an autistic used to measure others? Is it because we have to prove to NTs that we are really are pussy cats? That we have to give them some sort of reassurance that we’re not like those guys? Can autistics be like, dogs, ferrets, horses, ducks or even rats? More importantly, what value is it for us to be considered typical by NTs, why should we be their ‘pussy cat’?

-Bard.

Shutdowns

This pass week has been very intensive. Thursday being the most with me teaching Melanie's class on how to write autistic characters and as well as helping adults during the OAADD conference. Over all my activism has been at 11 all week. Today though I'll be seeing my favorite author. So no activism today :3

However this topic isn't about those two things but about Nov 1 communication shutdown. I am honestly rather skeptical about this. Mostly because if feels like a half bake idea. Sure for one day people are going to be frazzled without Twitter or Facebook. But that's not going to illicit the empathy needed to understand the communication blocks we autists experience. Mostly because it's easy to get around also it's only got one day.

For use communication blocks are forever and not something you can easily get around. Many of use can't talk, and have trouble using computers and for us communication is an effort, but we've always seem to find creative ways of doing it and doing it well.

Honestly this idea sounds so half-baked I wonder of the NT that thought of it can really attempt to understand the frustration of speaking a language that know one could understand.

Appropriatness and Happiness:

If Tikaani isn't lining up his action figures or playing with his legos, he's watching TV. Not that I mind. I can do my laundry and wash dishes without him shouting "AUNTIE!" But as of late he has been watching "Ni Hao Kai Lan". I keep asking him if he wants to watch Bey Blade or if he wants to get out his Pokemon DVDs or if he wants me to change the channel to Nat Geo. Instead, I get a whine followed by hair pulling, Tikaani-ese for "No no no no, don't do that." So I let him watch it without interruption. As much as it personally embarrassing for me to have my 16 year old to watch something meant for four year olds. I have to simply let it go. If it isn't harmful to others or himself or destructive, I can't really stop him.

Besides, the trade off is that he is learning Mandarin Chinese...that's not really a bad benefit.

((modern setting for essay purposes))

Kim wrote this weeks ago, and I decided to write a response about it. Something that really needs to be touched on as an autist.

I don't see why it is painful for a parent to see their child happy. If your seven year old is still watching Telly Tubbies and bouncing around I don't see how that is heartbreaking or tragic. I don't get why we have to have play with age appropriate games and watch age appropriate TV programs in order to be happy. I don't see why a girl can't play Tonka trucks or a boy with her sister's Barbies. Why is appropriateness and happiness have to interlock?

I guess it bothers me a bit because of the pressure to be just like our typically developing peers. That we putting pressure on kids to interact and share like interests with our peers and not just be happy with what fascinates us. I saw nothing wrong as a fifteen year old to religiously watch "Sagwa: The Chinese Siamese Cat" on PBS. I was happy and my sister and I watched it together (without fighting OhEmGee!) and it was generally a happy time after so much stress from school and Katie and I loved to watch it. Just as we both loved watching Sailor Moon (MOON PRISM POWAAAAAH!) and later Outlaw Star. Should I have been watching shows appropriate to my age and mental level? Yeah, but yet. Those shows were geared towards social protocols and cues that I was rather obvious of. I wasn't interested in who was dating who or what secret Character A was carrying. I didn't get into that until I was at least twenty. I was more interested with the story being told than all the social details. So watched cartoons like "Sagwa" and "Big Guy and Rusty" and "Astro Boy". I was into the story.

The point however is that later I did watch shows like "CSI", "Bones" and "House" which are more for my age level than cartoons. Sure it took me a while, but never the less it came. So I still obsess over cartoons than I do over TV dramas. Yet in end does it actually matter? Why is heartbreaking to see me laughing my head off or grinning like a fool? Why do you have to feel embarrassed when I am rubbing my face on plush animal or lining something up?

Why the very real joy, is the same as the very real pain? Can you answer that?

Functionality and Normalcy

Now at age 18 Tikaani could feed, dress and use the toilet by himself. Skills that Hanai though he will never learn. However he still has trouble cooking the most simple of meals, can't sow or tan leather. He can make a drum from scratch though make a fire and hunt for clams and even fish, but not hunt or work with any weapons. He can't be left alone for his running behavior. He can read and write though and does well with dogs.

but...is he normal?

What is exactly is functionality? Why do professionals fixate on the binary of low and high functioning? Is Tikaani low functioning since he could barely speak accept for short sentences or is he high functioning enough since he could do a trade like make drums or harvest selfish in his tribe and he is also literate.

Functionality creates a border. An us/them mentality that does more harm than good and the concept of functionality seems to be evolving every year. I can't drive I can't hold a full time job I probably won't marry again (I don't even want to talk about that) or go to college. Am I functional though? Doctors think I am. I am Asperger, ergo HFA. So I must be high functioning. Despite having obvious challenges that more "functional" people have. I know autists that can drive and hold full time jobs, marry and be huge drivers in politics. Are they more "high functioning" than me? Do they get their Autie Licenses revoked?

I have seen the dreadful hierarchy that functionality causes. This idea that HFA autists should 'lord' over LFAs makes me nauseous. The idea that the LFA need us to protect them is stupid. ASAN unfortunately from what I see makes no effort to address this issue. This deciding line between LFA and HFA and the fact that these labels are going extinct (eventually) is going to be important for ASAN and other organizations to pay attention too. They need to see the infighting and the ableism within the group. I believe LFA people have much to contribute as long as they gain accommodations they need.


The problem is...once an oppressed group gains power, the opposing group tries to find ways to get it back. Any means necessary.
You can interpret that last line any way you want.

PS, I don't put Tikaani with any functionality label, at least not personally. I use a label to for reference for some RP players and in my fictions for the public. But generally, Tikaani isn't Low or High functioning. He's...Tikaani.

Bard

More With the Light and Head of the Curve

Three and Four of With the Light came in today it was nice to finally get a chance to read it. My thoughts are all jumbled again so lets see how I can organize them.

The third and forth book fixed a lot of issues from the first two. It's nice to see Hikaru developing in the other books, I'll get five soon. But from I am readying Hikaru tantrums have been less then orderly and there is more conflict. There are lot of issues that Keiko brings up in the books including siblings being short-changed and something that struck a chord.

Why the hell doesn't the frigging US have jobs designed for people with ASDs? Why the hell does Japan have law design specifically for folks with DD? I don't know if the US does but if it doesn't someone needs to get on that like flies on shit. The whole deal with autistic people in the work place and reading in book four made me sad yet passionate. We Americans need to have job places like Specialestern or have centers for people on the spectrum. It seems that we're way behind on for folks that DD. I just bugs me.

As the story progresses I know discover that Hikaru also has mental disabilies but I think that is just over dramatize that Hikaru is LD of curse what autist isn't some way. Also there is an HFA boy that show up too. This as another HFA makes me giddy. But I haven't seen an asperger autist show up yet. Over all three and four still give me hope that someone out their gets it. That we need help, not a cure. A 'cure' doesn't solve anything. I want work full time without the fear of losing my job just shortly after gaining it. It's hard when stuff just seems to be....backwards. Everything is so hard even when you're on the same level was your peers (kinda) I feel always as an unequal to my fellow staff. I just feel...unbalanced. This will never go away. Maybe...it will when I my colleagues are also on the spectrum. There will be no wall that way. I don't have to 'lie' to them and say I am normal even though I am not.

I am not normal it's not bad, but it's not helping my issue.

I wish I could write to Keiko Tobe. I want to write to her, tell her how much I aspired to tell my stories with pictures as she does. About my struggles as an autist. I wish she could see this and know someone from the US want show her that our words are important.

Mathmatical thinking.

We're creatures of structure us autists. We like routine and we try to keep to our routine. Every morning at Nine o clock I get up and get on the computer. I check Dominic-Deegan first then e-mail and then Livejournal in that order. Then I get dressed, eat something or drink a cup of coffee brush hair and teeth, pack up and prepare to leave promptly at 10:15 or 10:17. I catch the ten-thirty bus. If the bus is late I get angry and I pace.

Even someone that can go with the flow has a set pattern. Even on the bus I sit on the same seat every day unless someone else is in it then I sit close by. Being anal about punctuality has a bonus though, I am almost never late to work. and I call in sick when I am under the weather.

Why are us autist so ridged when NTs are so pelt-melt? I can't tell you why I have to do the things I do. I'm not inflexible, I do other things within my morning routine like get a cup of coffee on the way to work, or cast runes or do tarot before I leave. In the afternoon I am back on the computer and I don't get off until I go get something to eat. Occasionally I go out with a friend on the weekends. But generally I keep to a pattern.

It's believe that we do this because we can't be abstract and have very black and white perspective. I don't think this is all the way true. We can be abstract but we're not black and white. I believe we're mathmatical thinkers. We follow a basic logic. A+B=C NT's don't. They are more, "A+B=whatever" They think logicily yes, but not mathematically. A mathematical thinker doesn't just put whatever answer the feels fits and then changes it when ever he likes. A+B=C that's it. For some autists, formals don't just change and when they do it doesn't make sense and we get confuse and panic. Because if "A+B=C.2 then what about the other formals and equations we follow? Does F-D+U=A now? We get angry when we're thrown off routine not because we're stubborn and we have to do things just so, but because now I don't know what to do or what the right response is and we end up panicking.

Whilst I am very flexible and I do enjoy spontaneity when I am not working and I love adventuring and exploring the new and the unknown (right brained here) Work is different. I have to follow a set of rules and routines. Getting me off these rules is not a good idea. Here is an example of this.

On Wendsday, the parents threw a big lunch for the teachers in an act of thanks. I had no idea about this. So when I walked into the Teacher's Lounge to clean the microwaves imagine my shock at all the food and teachers. Of course they welcomed me and said "Have some lunch Noranne" I was so confused and awkward (I mentioned that I was awkward and they all laughed), A+B now equals D. The math suddenly changed and I was scrambling to figure out why. I ate lunch an I appear to be totally fine but inside I was scared of getting yelled at by my supervisor. After lunch we talked before I left to go clean. She said ordinarily I wouldn't be allowed to eat in the lounge but today was ok. I nodded and was fine with it and I went back to work with some cookies and a clementine for later nomming. I was upset and confused but I went with it.

Changing routine is not something that parents do all the time unless they have to. Many know the consequences of breaking the equation to throwing a "whatever" into it. However many autists do learn to be "flexible" or rather in my case. Keep our frustrations and anger internal because gods forbid we ever get confuse when NT's do something that fucks up everything.

We also like routine I believe because we like to have a little control. One of the reasons I am so flexible at home than at work is because at home I can make my own decisions and not get punished. I don't have that power at work. So I want to know that after first period set up I start on heating second period's lunch. Because I have that power that knowledge. It's the only security I have and finally for some, it's the only comfort we have.

We like the comfort of A+B=C.