Well, that plan certainly didn’t work out.
It’s been a whirlwind month, in my defense; I feel like my brain leaked out my ears.
We unofficially/officially/weepingly fired our lawyer just after I wrote in January. Neither of us could stand, in good conscience, to stick with a man who told us he refused to take payment in anything other than a lump sum because we’ll just break up like all his other clients. Charming.
We spent an awful lot of time looking for a second cat to join our little cat family and keep Prosper happy. He’s been bored since we moved here, after getting used to having both my mom’s cats available for play and/or harassment. This has meant a lot of walking around and yowling, which I’m sure you can imagine is charming and not at all likely to get us in trouble with the neighbors. This culminated in a kitten, Madeline, who is the nosiest, bravest little thing I have ever encountered. Nothing disuades her, and she is rather fond of Prosper already. Prosper remains undecided, but he starts yowling again if we separate them because he’s playing too rough. Fairly sure he thinks she is his toy.
I’ve been driving a couple times with our livingsocial flexicar deal. Turns out driving in Australia is fine, except the windsheild wipers and turn signals are reversed. Fuckers.
Last week my temp job unceremoniously ended. I was apparently mean to permanent staff. In my defense, they were terrible at their jobs, made mine harder, and got paid more money than me for it. Also no one told me to tone it down until it was over, which is not exactly helpful–or trust building. I didn’t disclose the autism stuff at that job because I thought it was just a temp position, but I will be doing so in the future. Better to be up front that I am not clear about what I can and can’t say without explicit direction. Lesson learned. However, that was the worst job I’d ever had, so leaving hasn’t hurt too much.
And that is why I haven’t written anything.
Well. Maybe a latte instead. I love you, Melbourne coffee.
Melbourne can’t work out if it’s beautiful or the dreariest, coldest fog bank this side of the Pacific. Both make my current job temping at a giant insurance agency somewhat unbearable, as it is either all sparkling sunlight from the roof of Southern Cross catching my attention and begging I go play, or the sort of chill that makes getting up at 6 in the morning intolerable. Despite my protests to myself that I’ve gotten up far earlier for work, it was in a job I enjoyed and valued. This job is sending rejection letters to people who just wanted some massages or glasses or anesthetic for their brain surgery and who, for a host of reasons from filling out the forms wrong to simply not being insured, I must cheerfully and politely deny. Previously, I thought my job in Staunton, working with mentally ill kids who needed hugs, not locked rooms, was the most evil job, but this might actually be worse because it’s dissociated from the pain I know I must be causing.
It turns out that what I thought would have been a good environment for me, a quiet office with cubicles, is utter torture. I have spent much time lamenting the noise levels of previous jobs, and how standing all day hurts my legs and feet, but sitting all day in one spot has me a fidgety, stimmy mess. It’s blissfully quiet, except for the other hundred people typing and sighing and making far more noise than seems reasonable. I could tune out others’ conversations in the bustle of work before, but now they are bright spots in otherwise uninterrupted tedium.
So I need a job on my feet, doing things with my hands, even the same boring thing over and over. Soon, please. It’s getting hard to pass off the stimmy stuff.
I’ve been reading back over a year, and oh god. I have been a whiny shit. I am so sorry. I promise to stop being such a whiny shit. For real.
I actually did end up writing a really great piece about what it’s like to be autistic for TEACCH, which I will publish here soon, which is what led to me reading stuff I wrote months ago. I probably could have cobbled together something from all of the millions of times I wrote about it previously, but this new piece is good. It’s confrontational and social model-y and I like how my writing voice has evolved in the past year (it means using AND a lot because I want to, mostly, and also comma splices). I almost never remember that there was this one time I was in college and got published in an anthology. Like I can actually write, if I stop being such a shit and just do it.
So that’s going to be my goal: just write, and stop being such a shit. I have a little over seven weeks until I leave(1), and I think it’s incredibly reasonable to suggest I could write a post a week. My intense interest in autism hasn’t really faded, but I no longer feel compelled to write about it exclusively; since being made an Official Autistic, I have felt much more comfortable just being and not having to yell a lot about how autistic I am. I’m very caught up in MBT fandom brain at the moment, but I don’t know that I want to write fiction and I have a tumblr dedicated to fandom thoughts. So I’m not sure what I’m going to write about, just that I think it can happen, and I think it can be excellent.
I wrote once that when I feel brainless, the only cure is to force myself to do something intellectual I enjoy. Greensboro Public Library, nonfiction section, around 360-375 and 616ish, I owe you my brains.
Not in a zombie way.
1. OH GOD OH GOD I haven’t told work yet (I’m planning to give them a month’s notice) and there is so much packing and cleaning all the stuff and I am using this stuff, how am I supposed to also pack it? Shit.
A memo to all of my coworkers, who will not, of course, read this, because if I told you what my website was I’d have to self-censor more and I’m super uninterested in doing that:
Yep, you heard me correctly, I’m autistic. See, autism is a vague group of behaviours and ways of processing the world we all share, and no two people on the spectrum are identical any more than any two people who are NT are identical.
You’ve seen me stimming, but apparently without knowing about autism you’d just thought I was fidgety. Ha! Trick’s on you: stimming IS just being fidgety for people on the spectrum. We stim for the same reasons any other person might tap their feet or shake their legs in a meeting: it provides sensory stimulation that helps us regulate our behaviour and emotions.
The thing about autism is that it makes me really awesome at some stuff, and really not awesome at other stuff. My particular, unique brand of autism makes me really good at learning scripts (“Please let me put this thermometer back under your tongue along the gumline.”) and repetitive actions like taking a blood sample. It also makes me really bad at some stuff I have to do at work, like multitasking and listening to multiple things at the same time. I’m sorry you were speaking to me and I walked away–I was busy hearing the faint harmony line in this song on the piped-in radio station.
Autism also makes me prone to these things that I’ve called a few different names in the past: panic attacks, tantrums, meltdowns. They happen when I’m feeling overwhelmed and without any control (and usually when I’m tired and/or hungry). I know my limits and my strengths, and ask that they be respected like any other person’s–even if they seem like they’re weird.
When you start requiring me to do multiple things I’m really bad at (like listening to two imputs and multitasking at the same time), there is a very strong chance I’m going to have to go cry somewhere and might scare off donors.
Can we please not make that happen? And can we please not laugh at me when I ask?
Like Hez, I don’t believe in resolutions. I think you can set goals and have dreams, but timelines are invariably off and there are always surprises that change who you thought you were.
I’ve been thinking about how this blog has moved away from blogging my thoughts on autism and feminism and become more of a journal. Neither are really what I imagined when I started writing in this space, and I’m not sure either is what I want to be doing here.
So I don’t believe in resolutions, and I don’t know what I’m doing with this space.
I want to change my life so that it’s designed to make me happy, not to make me feel rotten. I’m starting a new job next week. I’m getting my new name in my passport soon. I’m getting Prosper’s import certs and making plans. I’m making plans. And I think I can learn how to be happy in a way that can be measured beyond moments.
Lots of thoughts, not a lot of brains.
Two important things have happened, however.
1. I will be done with my current job on December 17th. No, I do not have another job lined up (though I’m applying and interviewing). I am surprisingly not too anxious–yet.
2. I cut off all of my hair.
It’s been a long time since I updated, but I felt it was important to post today. I missed Autistics Speak Day at the start of the month and just seemed to lose a lot of steam (pun intended).
November is a hard month. It contains Kitty’s birthday and the mixed feelings I have about that (glad she has a birthday, not glad I can’t be there with her for it). It is also often a time of year I find myself increasingly depressed; as much as I truly enjoy winter and late fall, I still have a biological reaction to it that is a lot less joyful and a lot more sobbing. I’m also having a weird sense of loss this year, because Greensboro doesn’t get snow. Last winter had a shitton of snow (that’s a precise measurement) and I will be lucky to get a flurry this year. I like snow–except digging my car out.
This November has been especially difficult: I still have a job which I do not like and feel is not ethical; I do not have a replacement job lined up; I have started to come out to coworkers about this autism stuff and that’s led to what feels like bullying, even though I strongly suspect it’s just meant to be friendly teasing (and then I feel crappy about feeling bullied, because I really did have a true bully at my previous job and this is pretty minor in comparison); I had to pass up a last-minute eval appointment with TEACCH because I couldn’t get off work; I’ve been sick twice this month, totalling about 14 of 20 days so far. I think I actually prefer the sporadic and scarily violent times I was hit or kicked at my previous job to my 10+ small kicks, hits, pinches, slobbers, and otherwise “affectionate” violent and upsetting touches every day.
I am sick of being assaulted, sick of being sick, sick of yelling at people to stop doing perfectly reasonable things like stimming because I’m supposed to, sick of feeling like a traitor to all my fellow autistic people because I get so damn frustrated that I understand the autistic line of thinking many of the people I work with follow, but due to a 4-5 standard deviation gap in our verbal and processing speeds I can’t figure out how to help them. How do I explain to someone that, actually, I totally get what it’s like to want to hit yourself or bite your hand and have a meltdown, and this is a good way to defuse that feeling rather than having the meltdown? I understand, but I can’t communicate that meaningfully, so all my insights into how to help are useless. I can see that the autistic man with overwhelming ADHD and difficulty with reading needs to have all information blocked out on the page so he can concentrate on the letters; I can’t figure out how to convince him to use the tool I made. Then we both get frustrated and he hits or kicks me and I have to go have the same meltdown I had to scold someone for an hour earlier.
I am sick of feeling utterly alone. Kitty is there, and lovely, but long distance hurts in a physical sort of way. I thought that I had plans for Thanksgiving, but they weren’t a priority.
So…whining wasn’t actually what I wanted to write about. I wanted to write about how today is Transgender Day of Awareness and how I have come to identify as genderqueer over the past couple of years, and how I’ve never come out except to Kitty before. But now I’m crying instead, so I think this is done.
Oh, and my name has been changed.
I loathe person-centered language.
Part of my job at work is supervising residents in their work setting (if you want more information, feel free to scroll down to the locked post). They do a variety of jobs, and one of those is making the training binders for new employee orientation. This is a new task for my team, so it’s impossible for me to judge how independently they’ll be able to do it with time and practice, but this first lot of 15 needed to be done by yesterday and it ended up being mostly staff doing the work. Since I greatly enjoy doing this sort of menial paperwork–sorting, organizing, labelling, filing–I was very good and found it more enjoyable than most of my job.
The binders are a drastically better collection of information than I had at my previous job. There are sections about developmental disabilities, cultural diversity, and appropriate teaching strategies for adults. There are a few standout ideas in there, like an article about the differences in language use between the people who live in the group homes and staff, and how it is intensely othering.
There’s also a big section on using person-centered language, and having stared at it for days and days while doing these binders and then having a little nudge from the internet, I feel like I now have a simple explanation for why person-centered language unequivocally sucks.
Person-centered or people-first language is this idea that we should phrase things with the person placed before the disability:
Person with autism, not autistic person
Person with intellectual disability, not intellectually disabled person
Person with hearing loss, not D/deaf person
Person with vision loss, not blind person
Some disabilities lend themselves more to one construct or another–person with CP sounds pretty tolerable to my ears, while CP person or cerebral palsied person sounds weird (Kit, I welcome your thoughts on this specifically). I don’t like any of the adjective forms of Asperger’s that have been constructed (though it’s sort of moot since I think autistic is a better descriptor for the whole spectrum anyway).
At first glance, this idea doesn’t really bother me. I’ve felt pretty neutrally about it for a long time–I couldn’t see how it was harming anyone to use unnecessarily long constructs when the shorter ones were just fine and inoffensive, but whatever. If someone wanted to “put the person before the disabilty” and that led them to treating disabled people as equals, then fine.
But my work is inherently about how we (society-general we) can’t treat people with disabilities as equals. Every person I work with has a documented intellectual disability, and most of them have multiple disabilities. Because of this, they have been deemed unable to be their own guardians, their own caretakers, their own adult people. It’s not that I think needing assistance–any level, from mild to total–makes one less of an independent adult, but few have actively chosen of their own right to live with us. They are there because they have been “placed”–deemed too unable to learn, adapt, care for themselves that they must have caretakers whether they want it or not–rather than because they decided that they want help.
I think person-centered language actively harms them, and me, and all of the disability community.
Person-centered language claims to be about people first, but why would we need to make awkward linguistic constructs if disability was a neutral concept? Saying that we put people first means that you think disability is shameful, in need of being hidden or removed, that you are unable to think of people who are openly disabled as people. Saying I am a person with autism rather than an autistic person denies that autism is a value-neutral descriptor for the way I think and experience the world around me. It tries to make autism into something separate from the “real” me (and that leads to dangerous curbie mythologies and “treatments”), into something that is bad. Saying we are people with disabilities rather than disabled people shows that “disability” is a dirty word, something bad and to be avoided, rather than a word that describes our interactions with the community because of our atypical strengths and weaknesses. Saying we are people with disabilities rather than disabled people removes the burden from society to make adaptations and accomodations and places it upon us.
Using person-centered language ends up devaluing the person because it attempts to remove a central part of who they are and make it negative.
Unfortunately, I would probably be fired if I made some key edits to the binders, so they’ll remain as-is. For now.
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.
My name is Ali, though sometimes it's Eliot.
I have many tumblrs, which you are welcome to also visit:
Fuck Yeah, Kate Miller-Heidke - the only active Kate fan site, which is baffling.
The Branden Rose - the only active Monster Blood Tattoo fansite, which is less baffling.
I also have a semi-successful etsy shop, which you should visit, below.
A brief history: