New theme. I think I have successfully made it not borked. And the rss is definitely no longer borked. WIN.

…less win: I need to figure out how the hell to make categories go, since it appears to think I want them.

I’ve been trying to write a post since I landed in Melbourne. The city feels like home–well, maybe “feels” isn’t actually the word I want there. “Looks” is more accurate. I often have a difficult time noticing that I’m having feelings, let alone identifying them, until they’re big and overwhelming and scary. Melbourne looks like home–and the pieces that have changed were immediately noticable. A slightly modified tram map posted on the stop bench enclosures. A new poster. A finished building or three where I’d left unfinished wrecks. My favourite Safeway is now a Woolworths. Still, most of it is the same. Roses, endless gardens of roses. Cats and unfamiliar-familiar birds, and Kitty. Coffee. Friends and parties where I can’t understand a damn thing because my auditory processing is not up for the task of dozens of conversations at once–and friends who understand that, and seek me out to have quieter (or louder, to drown out the noise) talks. Friends. Plural, and more than just two.

I’ve been trying to write, and utterly failing.

I’ve been thinking about inertia, and how even though I want to write, I can’t make the words come together in any sort of order that makes grammatical sense, let alone sounds like me.

So. I’m well and happy. We’re going to the zoo! I may be able to take photos, if I can just get over the inertia.

ETA: Combined inertia plus spoons plus lack of funds means zoo later. Maybe tomorrow.

Where the sky is full grey…

I’ll be in transit to Melbourne for the next day and a half, and am travelling into the future (wooooooooooo). Here’s hoping to no airport meltdowns this time.

Multi-topic post!

1. I will be on a plane in less than 24 hours.

2. No one has opinions on a new theme? You guys suck.

3. I’m just getting around to reading some posts from BADD. Here are some reccomendations to start:

Kitty’s post about miracle cure themes in kidlit
The self-pity model
Of privilege and auditory processing (I’m very lucky that my auditory processing is relatively good for the spectrum.)
Public transport and disability in Melbourne

4. An interesting piece about listening to patients (I know, it’s such a bananas idea!)

I have an invisible disability. You can’t tell by looking at me that there is anything neuroatypical about me. You might guess when I speak, though I put a lot of effort and spoons into keeping the conversation going and my tone appropriate (volume sometimes escapes me, but I’m usually WNL). If you do notice anything off, it will be in a complete inability to keep small talk going for more than a couple back-and-forth rounds, or the regurgitation of trivia only marginally related to the situation at hand (“Scots have red hair because of Viking settlers…”).

Up until a couple years ago, I had no real awareness of autism. My first introduction to the topic was in 8th grade when the county-wide “special” school was piecemealed out to the elementary and middle schools by group. My middle school became host to an autism-only classroom, placed in a trailer (about half the school was trailer classrooms) and only interacting with the rest of the students by sharing a lunch period. The students were all boys, and all non- or minimally-verbal. I was pissed off that I wasn’t included, because I misunderstood–I thought it was an artistic classroom (thanks, auditory processing!).

It wasn’t until I was in my 20s that I really learned about autism and had the terrible moment of self truth: shit, I am autistic.

You see, I grew up knowing there was something different about me. I was a target for bullying even through college, and work. I did not make friends easily and held the few I did make jealously. I was upset if my friends made other friends, because invariably they would not want to play with me anymore. I was exceptionally bossy because I needed to be able to control the interactions; playing with kids is hard because they do unexpected stuff and I could not handle the unexpected. Being bossy was my attempt to eliminate that element of anxiety. I was a very picky eater, both in texture and taste. I was gullible with peers and could be goaded or encouraged into bad behaviour very easily; I had no sense of what made a friend different from a bully if both were being nice to my face. I probably would have benefitted strongly from a visual schedule, as I needed multiple reminders to do things like chores (and, later, when I was in high school and college and had more control over my scheduling, homework and papers), but chafed against verbal reminders. I exasperated my parents with apparently selfish behaviour and a lack of social graces. I was distractable in classes and made numerous “careless” errors on work I knew and understood because something else caught and held my attention.

I was also hyperlexic, reading and writing by two and a half. I learned early that language helps, and used this to soak up information. I learned as much as I could about whatever I was interested in; my interests could last days or years. I played with dolls well into my teens (and have been carting my American Girl doll around with me still–she came with me to Australia and then to Virginia). I can still sing songs or parts of song word and note perfect that I learned for my fifth, sixth, and seventh grade choir performances, 15 years ago. I only need to go someplace once before I can get there again with few or no reminders or prompts. I could look at a map and visualize my path. I amassed vast amounts of trivia. I spent a lot of time alone, which gave me to the tools to really consider my self-conceptualization. I draw beautifully, and sometimes write well. I experienced the delight of synesthesia, my tastes and textures lighting up with colours.

All of these are things, states, experiences, emotions that I can look back and say “there was probably some autism involved in that.” I cannot meaningfully separate out autism and my personality. Autism has shaped who I was then and who I have become as an adult. Autism meant not looking adults in the eye when being disciplined, and being yelled at for insubordination for it. Autism meant sobbing when the boy I had a crush on “killed” the oil clay cat I made and kept on my desk in 4th grade. Autism meant being perfectly willing to taste pine sap when a girl in my class told me it tasted like maple syrup–twice. Autism meant not skipping a grade. Autism meant being able to hear perfect pitch in choir, even if my rogue vocal chords could not always produce it. Autism meant being teacher’s pet. Autism meant taking an overload of classes every semester in college, just because I could. Autism meant the small, private university I loved over the bigger, public university that had more academic choices–and, because of this, autism meant my best friends.

And yet, I didn’t know about autism.

Growing up, for me, led to a set of beliefs that I have had a very, very difficult time removing. I didn’t know that many of my struggles and achievements could be attributed to autism. Instead, I attributed them to two ideas:

1. I am bad and worthless.
2. I am ridiculously smart.

I grew up feeling frustrated with the world around me, and knowing that the world often felt frustrated with me. I often didn’t understand what was wanted of me, but admitting that and asking for help would mean I wasn’t smart, right? So I didn’t ask for help, and did things wrong, and then I was bad. It was a self-perpetuating cycle. To be not bad meant I needed to be able to do things properly, and I was smart, so I should be able to figure this out! And then I wouldn’t, and then I’d fail, and then my self-esteem would sink another notch. Self-esteem and the appearance of confidence are not the same thing.

Being ridiculously smart meant that it was okay I didn’t understand or particularly like my peers (it was mutual on both points). I desperately wanted friends, and when I was finally working out that bullies and friends are not, actually, the same thing at all, I consoled myself by remembering that I was smarter, better, more likely to succeed. I told them they had smooth brains. I sought out the company of adults and books and the internet–it was still pretty new, then. Being ridiculously smart was the only defense mechanism I had against my classmates, and I hung onto it with all my might. This was not a positive self-image. It was bitter and angry and filled with self-loathing. I could not be normal, so I had to compensate with the only thing I believed was of worth about me.

The thing about defense mechanisms one develops in childhood is that they’re pretty difficult to get rid of later in life. I’ve learned about autism. I make to-do lists and schedules and keep a planner. I write out my thoughts and make more lists and get post-it notes. I rehearse conversations, and try to take advantage of this strange, fabulous brain. I subject people around me to trivia endlessly.

And yet, still, if I miss a dose of my migraine medication, or forget to eat, or don’t call the bank to tell them I’m travelling for a month to Australia and could they please not flag my account as hacked for the fifth day in a row because I couldn’t remember to write the post-it note that would remind me to call, or I make a grave error with my friends, it all comes back and I am eight and I am bad and a failure. I can feel my self-esteem drip away, as if I was a watercolour painting put out in the rain. And if I am bullied at work, or forced to listen to misinformation, or interviewing for a job that I am ridiculously overqualified for, or rejected from a volunteer position because it didn’t occur to me that I could lie (or even just not disclose) about my mental health history, I can feel the irritation and self-righteousness boiling up inside of me. Damn it, I am too fucking smart for this, why can’t they see that and value the one valuable thing I have to offer? (And they don’t, because being smart is really only worthwhile when you can temper it with being sociable, and then we’re back to failure.)

You can’t tell by looking that I’m not neurotypical–not at first. Because I grew up without notions of neurotypical or autism or healthy self-esteem, you’ll get a carefully crafted idea of who I could be, if only I had been aware that I was autistic.

Even Blogging Against Disablism Day can’t stop the Kate lyrics.

To paraphrase Stina: either words have meaning or they don’t.

Let me flesh that out for you a little bit. I believe that words are impactful, and that our word choices reflect a combination of our backgrounds, our individual lives, and our education on a given topic. Becoming aware of one’s word choices and actively changing them requires acknolwedgement of privilege and a desire to mitigate that privilege.

There has been talk on Jezebel, a website I usually enjoy, about why words matter. We talk about why it’s not okay to use sexist language every day. There have been discussions about feminism vs womanism (especially in the comments section) and tokenism. Discussions are held about racism regularly. Fat shaming is verboten, and lengthy educational discussions are held by the commentariat regularly. It’s a pretty damn nice place to be out as queer on the internet (though it’s not quite as good about trans issues). We also talk about a specific subset of ableist language, namely eating disorders and body dysmorphia.

All of these are good things. Jezebel is a mainstream, very busy website run by paid bloggers. While there are safe-space websites to discuss these issues (Racialicious and Shapely Prose are both good places to start for racism and sizism, respectively), I think having them discussed in a busy, largely privileged place is helpful and important.

In my experience, a lot of people who are otherwise liberal and well educated don’t know a thing about ableism. Words that are ableist are part of many people’s regular vocabulary, and they never give them a second thought. This BADD, I’d like to maybe put the idea into people’s heads that these words aren’t okay.

There’s a thread of ableism in many Jez posts where other language could and should be used instead. I don’t think it would be fair to call out commenters, so I’m going to limit these references to posts which use ableist language, themselves. This is not a comprehensive list in any way–there are many words I omitted because I only returned one “official” (not commenter-written) result, and I didn’t put myself out looking for these words–if they weren’t in the first couple pages of results, I didn’t bother).

Schizophrenic: 1, 2, 3, 4

Retard/ed: 1, 2, 3, 4, (interestingly, Jez commented on the usage on Vh1 before)

Wheelchair bound: 1*, 2

Lame: 1, 2, 3, 4, 5

Bipolar: 1, 2, 3, (again, to be fair, there’s this, too)

Spaz and derivitives: 1, 2, (this is a very common slur among the commetariat, and I got sick of wading through those results)

Jez (rightfully!) gets upset when words associated with feminism are misused. The editors and commenters won’t stand for the misuse of words like “rape,” or “lesbian,” or “bitch.” It would certainly be nice if they would make this shift as far as ableist language goes, too. Unfortunately, I don’t anticipate that happening any time soon, since responses to noting ableist language, as recently as last week, have been angry and dismissive (to the tune of “Go find someplace else that will let you whine”).

*(A direct quote: “When you think of amputees, dwarves, people with Cerebral palsy, or wheelchair-bound individuals in sexualized situations, it seems wrong, doesn’t it?”)

For further reading:
Bitch Magazine
Feminism 101
FWD/Forward

This post has multiple topics because I am too lazy to make multiple posts.

1. I run google analytics on this website. I promise, I’m not tracking you down at all, my meagre readers, but I generally find it entertaining. Originally, I got analytics because I wanted to use it with etsy, and as an after-thought maybe six weeks ago, I realized I could run it on here. Like magic.

The most interesting part of analytics is the search referral terms. The top ten search terms that get people onto my blog are:

1. alternate lexicon
2. the alternate lexicon
3. perseveration/rumination thinking style
4. “foreign service” autism
5. “the neurotypical spectrum”
6. alternatelexicon.com
7. ari ne’eman is a piece of shit
8. autism loneliness
9. feminism asperger
10. food choice perseveration

Now, I should note that “top ten” is sort of euphemistic, since only the first three have yielded multiple hits. Still. This list is pretty awesome.

1, 2, and 6 are self-explanatory, though 6 begs the question of why they googled me instead of typing it into the url bar. 3, 8, 9, and 10 are all things I am interested in and plan to write about more (I’m thinking maybe of writing about feminism and autism for blogging against disableism day). I have no beef with Ari Ne’eman, so I’m not sure how 7 gets you there (except that now I’ve typed it out, it will inevitably do so again). As for 4, I’ve thought about writing about my experience applying for the foreign service two years in a row and being rejected early in the process, but, here’s the thing: if anyone (on or off the spectrum) tries to tell you that people with autsim, as a rule, do not hold grudges, that person is a LYING LIAR. I’m still angry at the foreign service and probably will continue to be for years. One of the many reasons I’m interested in medical school is so I can be better than them (yes, I know this makes no sense), and I felt an overwhelming sense of loss this spring when I realized I was not taking the exam this year. It’s really for the best if I don’t write about it.

2. There are a lot of cool places I like to go to that, for whatever reason, I have utterly failed to add to my links sidebar. Please check them out while I get to remodelling (see 3, below).

FWD/Forward, a blog about feminism and disability.

Hyperbole and a Half, written by someone named Ali, too, except she spells it wrong. Her blog is awesome enough to forgive that.

Hezabelle, my dear friend Heather’s awesomeness.

The princess of denial, my other dear friend Sarah’s awesomeness.

Both blogs my girlfriend has made and sort of totally failed to keep up with (there’s Kate Miller-Heidke on one of them!).

It appears that Derailing for Dummies (a must read) is no longer online, but there’s a reconstruction.

3. I want a new theme. HALP. I’m okay messing with it a bit to get what I want–I did with this them (and sort of broke it in the process, whatever). Does anyone have an opinion on any of these?

Paper
Airmail
Look Booster
Magatheme

I apparently fail at in-laws. Kit’s mother has a degree in disability studies and while I probably knew that information, I apparently failed to file it into the storage system. My brain makes me laugh.

This is a long lead-up, but it’s probably worthwhile. The combined topical drift and pedantry is also pretty indicative of what it’s like to live in my head.

So last week I lost my star on Jezebel. Jez is a Gawker Media website, and uses a tiered commenting system; commenters with stars by their names are always visible and post in black text, while commenters without stars are defaulted invisible and with grey text unless a starred commenter “promotes” the comment (the text turns black, but the commenter herself will remain unstarred). Last summer, when they put this sytem in place, I already had a star (the rules used to be 40 people following you or more earned a star), so I’ve been blissfully spouting off about disableism, autism, and other topics for close to a year, confident that my comments were always visible and always likely to be read. I have about 250 followers right now. In what ultimately was not a surprising move, I called out the editors on their ableist language again and got my star taken away as penalty (also, some delightful splainin via email!).

Since then, I’ve found that I’m less inclined to participate, because I don’t feel my contributions are automatically read or assumed to be intelligent. Funny how losing privilege–even silly internet privilege–reinforces the desire to not speak out at all. I posted a comment in the free-for-all section of Jez, groupthink, about this effect and ableism on Jez and it garnered a lot of interesting responses. One of the most interesting made reference to disability studies.

I think I knew, conceptually, that there was such a thing, but it had never really occured to me to think about it before. I’m seriously wondering if one can do a combined PhD/MD in disability studies rather than the more usual neurosicence or pharmacology or such.

This lovely commenter also gave me a link to Disability Studies Quarterly, since I had (of course) brought up autism (I’ve made no efforts to not be out, as it were, on Jez) and this quarter’s special topic is autism and neurodiversity. Please read any and all of the articles–I am, and they’re great. I can’t talk at length about them yet as I only got most of the way through “The Superior Half of Speaking”: An Introduction when I was struck with an astounding thought.

(This is not that thought, I’m getting there.) My brain works in a somewhat unusual way. I’m not quite sure if it’s autism, giftedness, or both, but I like it and would really hate to lose it. Like many people on the spectrum or with related conditions like OCD or ADD, I have difficulties with focus. I’m really awesome at focusing on one thing to the exclusion of everything else, which can look pretty obsessive, and I have a hard time changing the topic or subject of my focus. Changing tasks is difficult for me. I can marginally participate in a conversation and then revert right back to a previous topic, because that’s where my attention was the whole time. Multitasking and I are not friends. Conversely, unless I am interested and engaged in a topic (and sometimes even then), my attention wanders away from me to something more interesting (usually my own brain and products thereof). I cannot list how many times I have gone to do a simple task like put on my shoes or get my phone out of my bag and been waylayed for five, ten, fifteen minutes because I had a thought! and it was super interesting! and I forgot what I was supposed to be doing, and then when I get the feeling that I am meant to be doing something else I spend another few minutes trying to figure out what it was.

Meanwhile, as I’m busy focusing on one thing with the concious part of my brain, the rest of my brain is in a constant flurry of activity. As I take in information, it fits into what is my neuron-based cross-referencing system. My brain works like wikipedia: the more information I gather, the more connections I can make between facts and “articles”/topics, and it does it all without my really paying attention to it (though when I get distracted by my own brain, it’s like hitting the “random article” button on wikipedia, which, I think you’d agree, is way more interesting than a lot of other stuff).

Sometimes my brain makes really great connections–coherent thoughts so good they startle me out of whatever I’m doing. Have you seen House? It’s like that. And possibly just as obnoxious.

The topic of this blog post was one of those OMG I AM HAVING A THOUGHT moments.
So I was reading “The Superior Half of Speaking”: An Introduction, and I got to this sentence: “They understand, that is, how plenty of what is vexing about autism would not be so were society arranged differently.”

I studied International Relations for five and a half years of my life before crashing and burning. I have a BA and a GD in the subject, and while I found most of the theoretical stuff to be too abstract (or maybe just too abstract, too quickly–as Kit would surely point out, I can and do grasp philosophy when its presented patiently, repeatedly, and in terms I am familiar with), I really latched onto a single theoretical model and still like it a lot. I was a proud Constructivist, and the only one in either university, as far as I know.

“Constructivism” exists in a lot of disciplines, but I’m only super familiar with the political model. Basically, Constructivist thinking holds that the international political system is a self-perpetuating entity. The political systems we have are what they are because every time a nation makes a political move on the world stage, they reinforce their place in the picture. If you believe strongly as a political leader in open borders, or fair trade, or isolationism, or completely unobstructed free trade, you can’t wait for other countries to make the same emotional decision. By declaring your country to hold any given ideal, you inherently change the system of nations and your importance in that system. It’s fancy political speak, really, for “be the change you want to see” (I think Obama is a secret Constructivist, or at least his slogan-making people are). My Master’s dissertation, should it ever arise, was originally going to be on Constructivism and shared language leading to the perpetuation of shared political ideology. This is a topic I’ve read about, thought about, ruminated about extensively–information that my internal wikipedia can pull from without my even noticing.

So I read that line (again: “They understand, that is, how plenty of what is vexing about autism would not be so were society arranged differently.”) and suddenly I had A Thought:

Neurodiversity and the Social Disability Model appeal to me because they are Constructivist concepts.

The idea that disability is inherent in society, not the person, is meaningful to me emotionally (I don’t feel particularly disabled), but it also appeals to me intellectually. I am part of a broad spectrum of people, and my particular band of wavelengths is called autism (actually, I see the whole of neurodiversity as a 3-d Venn diagram, but I’m not sure how to translate that into words and haven’t found materials to create it visually yet). The idea that my group does not create the power structure because it is not dominant, so my group’s needs are seen as extraordinary or disabling, is an idea I can understand through my experience as a political Constructivist and translate into understanding in disability studies. Before, I was approaching disability studies as an unknown field, full of unknown ideas and language and concepts that (while I’d certainly get them eventually) were anxiety-provoking because they would be theoretical to me. Now I feel like I have an “in” and I guess I need to see if either Sydney or Melbourne offer a disability studies program, or would be willing to partner with another local university (I know LaTrobe has an autism research centre, so maybe they’d be a good place to look) to do a combined PhD/MD. Pursuing a combo–this specific combo–would make me be a better autism advocate and, I think, researcher. I think it would also make me more qualified to be a professor of the occasional class.

I didn’t really need to complicate this career/educational goal of a simple MD, but I think this might be even better.

April is Autism Awareness Month. Some of the hub bloggers have pointed out that awarness is only a baseline–yes, in some cases we do need to make people simply aware of autism and the broader neurodiversity of which it is a part. But in many or even most cases, awarness is not acceptance; it provides a convenient excuse to actually stop further learning (“I know all about autism, I read about it during autism awarness month! You can’t possibly be/know/think/feel X!”). This is a mindset I see regularly at my soon-to-be-former job: my coworkers are aware of mental health issues, so they feel no compulsions to further their knowledge in any meaningful way. This leads to harmful and usually incorrect stereotyping and actions which are not just unhelpful, but sometimes actively harmful towards the kids. This baseline awarness does nothing to help the autistic boy who tantrums all night because of sensory issues or the depressed girl who really does need to just talk to someone she can trust not to overmedicate her.

Emily suggested that people who are going to transform awarness into acceptance would do so regardless of their awarness, and people who won’t will not regardless of the amount of information presented to them. In my personal experience, this is absolutely true.

But, I also think this is true, and poignant.

Being aware is never enough to promote acceptance. Being familiar usually is. Yes, some people will always prefer to try to change others or refuse to believe there’s anything different about them in the first place, but I would like to think that really knowing people on the spectrum promotes acceptance. Familiarity shows that we’re human, and not really different than any other person in our needs and desires.

I think I might get that t-shirt after all, even if it is a bit pricy. I want to be able to show the people around me that they are already familiar with autism–they just don’t know it yet.