The Alternate Lexicon
Currently viewing the tag: "disablism"
It’s been an interesting week.
Yesterday I quit my job, the one I didn’t like and had to drive an hour each way to do. I have interviews scheduled and a lot of hope, and a lot of horrible anxiety, which is why I now have vanilla coke. It helps.
Thursday and Friday, I exchanged emails with Stina which curiously involved me apologizing an awful lot and her not at all, because I very strongly value having her as my friend even if she isn’t a nice person (1). I also learned from Kitty that generalizing lessons about emotional intimacy is probably a good move. Huh. Anyway, this led to an awful lot of sobbing and feeling pretty much like I must be broken in some way to not be able to sustain my friendships from college. And that led to…
Opening an email from Alice. It’s been sitting in my inbox, marked as read, for just over four months. I didn’t open it originally because it was two days before I started my new job (which turned out terribly anyway) and I might not make a personality disorder out of it, but I can certainly be avoidant. I didn’t open it later because it’d been a long time. Then I didn’t open it out of habit. So I opened it, and it was a very long, beautiful, heartbreaking apology letter (I habitually distrust email subject lines, so the fact that it said it was an apology didn’t convince me). It was everything I would love to get from Stina and Dylan and don’t really expect.
So then I cried some more. And then my job was over and I slept for ages. And then I went to the farmer’s market with my mom and we bonded (! I KNOW!) over apparently being unable to make our loved ones feel emotionally connected to us because we are demonstrative sort of people, not declarative, and apparently that makes people really annoyed. And then I wrote a blog post about it using really terrible grammar.
AND THEN I DECLARED THAT I AM A ROBOT MADE OUT OF MUSCLE.
And then it was over. Except for a footnote.
1. I would like to know why it’s okay to say that when we’re friends, but not when we’re fighting. I genuinely do not understand the difference. I’m expressing the exact same sentiment, but it was hilarious once and now apparently elicits tears.
Tagged with: ali • AND THEN BAD GRAMMAR HAPPENED • apologies • asperger's • autism • depression • disablism • dissolution of a friendship • family • friends • frustrations • kit • loneliness • meta • omg • utter pedantry • work
If your response to someone being upset with you for your bad behaviour is along the lines of, “Your feelings are your business. You could choose not to be upset,” then you are in sore need of an empathy lesson. I would also strongly remind you that while you cannot “fix” or change another’s emotions, you are always in charge of your own actions: if another person is hurt in reaction to your actions, it would be thoughtful and kind to consider why.
Tagged with: ableism • depression • disablism • dissolution of a friendship • friends • frustrations
I stopped being friends with Alice when she blew me off.
Alice and I met within days of starting at Mary Baldwin. We auditioned for and joined the Madrigals together, and just hit it off immediately–similar senses of humour, both smart and curious about the world, and rather similar politics (though her Catholic homeschooled background made it hard for her to admit she was liberal, let alone progressive). She was one of my very best friends for the three years I was in college. There were regular rumours we were dating, we were so close.
I left and went to Australia and my girlfriend (much to Alice’s annoyance) and tried to keep up our friendship. I wrote in my then-blog, I wrote emails, I called a handful of times. The burden of maintenance was mine, but it was okay: I’d get back to the US and see her again and our friendship would properly pick up where we left off.
Except that it didn’t.
Alice and I made plans as soon as I knew I’d be back in town. Kitty was with me. We’d meet for coffee and catch up and everything would be great again. But Alice didn’t come for coffee; she blew off our date entirely to make an “emergency” trip for cold medicine for her (adult, able bodied, car-owning) roommate and then never rescheduled.
I put my foot down. Alice had blown off small things with me in college, and I’d always forgiven it. I knew that I liked more concrete plans than she did, and that she had many friends who were cooler than I was, so there was always a chance of being left for a better time. At the end of our second year, she decided unilaterally we shouldn’t be friends anymore since I was just going to leave anyway and she was bad at keeping up friendships; it was only after I pleaded to keep my best friend that we stayed close for the last year. Being ignored to baby the person she lived with was the last straw for me, and I cut Alice out of my life. We’ve exchanged emails once since then, which were unproductive, and she emailed me in September. I haven’t opened it. It’s been two and a half years since I lost my best friend.
Stina and Dylan were there when we fought: Kitty and I were staying at their house on that trip to Staunton, before I moved back to my college town. They were there when Alice and I fought over email–hell, Dylan was the one who opened the first email for me and read it, so he could warn me if I wanted to read it or not.
I’ve known Stina and Dylan since about a week into my first semester at Mary Baldwin. We met when I joined the queer/feminist group on campus, which Dylan and I would eventually co-run. They were my other best friends, complimentary matches for me and each other. It was a little easier to keep up with them when I moved, because calling one meant getting both, and they opened their house up without hesitation for us when Kitty and I arrived in the US. They invited me to live with them while I figured out what the hell I was going to DO with my life.
I don’t know how to write the collapse of our friendship. It’s raw and it hurts and none of the paragraphs I’ve started in this space are accurate.
I felt left out, ignored. I saw patterns in their treatment of me that made my heart ache with loneliness. I watched them each grow more unkind and reassure each other that it wasn’t so. I felt entirely unrespected. I couldn’t talk about it, too afraid to bring up small hurts but dwelling on them endlessly until they became big hurts and then I’d explode. But by then they’d forgotten the small hurts and I was making something out of nothing. For a psych major, Dylan is fucking terrible at introspection.
I was told, explicitly, that I was not autistic because i didn’t match his expectations of what an autistic person should be. I was told I was a lesbian, and any attempts to restate my actual identity were dismissed as trivial. I was told that genderqueer people don’t exist or are just indecisive. I was told I was petty, and rude, and embarassing to take out in public. I was told I was mean and hateful. I remember every fucking word that was said to me. They inform my self esteem and my sense of who I am and sow seeds of doubt deep into my heart.
We fought again and again. My therapist told me they were poisonous, no good for me.
I wish I’d listened to her. I wish I’d been able to listen to her. I defended them vigorously and angrily. How dare she say that about my only local friends?
I moved away in April. It was for the best; they hurt me again and again and while nothing seemed to change on their side, I felt broken and tired. I ended up here. I saw them in September for their wedding.
“Come for Thanksgiving. We miss you!”
So I asked off for Thanksgiving. I asked when they wanted me to come up. Two weeks ago they broke it to me: I’d be welcome to come, but they had no guest bed and were planning to spend black friday on a prolonged date.
Wait. So I’m welcome to come up, but I have to spend one of 3 days with them by myself because I am less important than them–married to each other, living together–having a date.
I didn’t go. They got their black friday together. I got time to myself without being touched and harassed and quiet. Lots of quiet.
“Dylan Grey had an awesome black fridate. All of my shopping is done. ALMOST. Lovely day with Christina Scott Sayer Grey, with delightful guest appearance by Megan Kolano. Tangled was GREAT. Bella is cuddly. Dylan out!”
They let a friend join them after all.
I think this is the point where I say I’m done.
Tagged with: ableism • ali • apologies • asperger's • autism • depression • disablism • dissolution of a friendship • friends • frustrations • kit • loneliness • meta • therapy
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.
Tagged with: ableism • ali • asperger's • autism • disablism • kit • neurodiversity • utter pedantry • work
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!)
My name is Ali, though sometimes it's Eliot.
I have many tumblrs, which you are welcome to also visit:
The Polite Yeti - My personal tumblr, full of silliness.
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.
Please buy things from me:
A brief history:
