I go in tomorrow morning to fill out paperwork for HR to begin my new job. I’m waiting for Stina and Dylan to do some reference letters and send them along, but I’ll get them when they come–no major concern.

My major concern is falling into a pattern of presumed incompetence. It was coincidental that I found this blog post today about the least harmful assumption (presuming competence even when others do not) as almost all of the people I will be working with have been diagnosed with intellectual disability (and many of them with autism). I need to work and remember that their diagnoses may not be correct and that any communication is welcome. I hope I’m up to the task.

I’ve been blogging here for a year, and nearly a hundred posts.

There have been two Kate-lyric exceptions (both for MBT fangirling) and this will make my 97th published post. In this time, I have:
-Used lyrics from “Caught in the Crowd,” “Dreams,” and “The Truth” six times each (fun fact: I don’t like “The Truth”!)
-Used lyrics from “Blah Blah Blah,” “Day After Christmas,” “Our Song,” and “Out and In” five times each
-These seven songs account for 39% of my post titles
-I’ve used 34 songs, 32 of which are part of the official discography (including Elsewhere, Kate’s previous band). Including Elsewhere there are officially 54 songs (not including multiple releases or versions of a song), and I have an additional 32 or so demos. I think I’m going to have to make an effort to use all of the released songs for a title in the coming year. No promises.

In less compulsive, more personal news, I’ve had a bunch of interviews for jobs. The one I like best is for a group home and assistance organization in Chapel Hill who work with kids and adults with intellectual disabilities, developmental disabilities, and some neurological disorders. In practice this means a lot of people on the autism spectrum, some with Down Syndrome, some with CP, many with more rare disorders and disabilities, and a huge variation in levels of assistance needed. I knew it would be a good fit when the interviewer went off on a long tangent about how their clients are people and have every human right we do (I guess I passed for NT yesterday), even if they also need some help with ADLs or holding down a job. He used some language I only hear in the disability rights movement and stressed that you have to respect everyone as an individual or it would never work. I have a follow up interview tomorrow (after the first yesterday), so hopefully it works out! I’ve also interviewed for an in-home counselling position, and didn’t get a job at a local bookstore–but I did get an interview at a sister store later this week.

AT NO POINT DID I BREAK DOWN INTO SOBS OF FRUSTRATION OVER THE AMOUNT OF MONEY I NEED TO SAVE TO SUCCESSFULLY MOVE TO MELBOURNE.

I credit the cat and his soft, soft tummy for this. Little known fact: sticking your face in a cat’s side and breathing deeply is incredibly good for destressing.

I’m looking for something that will keep my brain occupied. I love anagramming and the last phrase was very successful. I want a two or three word phrase (maybe four, if one is an article) that is easy to remember and has 20-25 letters. The last one was “the very hungry caterpillar” and it worked really well. Suggestions?

Grading People from Rolling Credit on Vimeo.

A short commentary on the use of the terms “high functioning” and “low functioning” as applied to autistic people

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