Currently viewing the tag: "disability studies"

There’s been a fair amount of discussion of the new/proposed autism criteria around the web, and particularly on tumblr. I’m glad we’re finally talking about them, since my original opinion on them was that they were fine. Not great, not terrible, probably not going to exclude anyone, and just sort of…meh.

A few people on tumblr have rightfully pointed out that the criteria are actually moving even further away from the lived experience of autism towards useless constructs of what autistic behaviour does/should look like according to allistic researchers. This is hugely problematic, if for no other reason than it’s scientifically unsound. Accordingly, I’ve been thinking about what I would prefer criteria to look like. This is what I have so far. All constructive criticism and commentary is very much welcome, since I think that the diagnostic criteria for autism should be autistic-defined as a broad group–we’re effectively deciding who gets to be in our group with us.

Apologies for the wonky formatting. WordPress was not happy with my beautiful tiered bullets.

A. Differences in perception (at least 3)
1. Sensory defensiveness (ie, complaints or avoidance of any of the following: loud noises or places, bright lights, textures (food or object/clothing), tastes, smells, touch)
2. Sensory seeking (ie, stims or stimming behaviour such as rocking, flapping, finger flicking, hair twirling, spinning objects, etc or actively desiring any of the following: deep pressure or touch, vestibular sensation [swings, spinning in any context, etc], specific smells, tastes, or textures)
3. Auditory processing difficulties
4. Unusual, awkward, or delayed motor skills, or asymmetry between gross and fine motor skills (ie, clumsy but with strong fine motor skills, good gross motor skills with poor hand-writing or table skills)
5. A reduced or lack of conscious awareness and/or use of allistic (not autistic) nonverbal behaviour and communication such as facial expression, gesture, and posture.
This criterion should not exclude persons who have learnt to read or otherwise comprehend nonverbal behaviour by rote learning, particularly adults. Intentional learning to overcome an inherent difficulty in comprehension is supportive of this criterion. It should also not exclude persons who have been taught to use nonverbals to be less visibly different. In such cases, internal report of difficulty should take precedence over apparent behaviour.

B. Differences in cognition (at least 3, one of which must be 1 or 2)
1. Difficulty in beginning or ending (at least 1):
-Perseverative thoughts or behaviours
-Needing prompts (visual, verbal, hand-over-hand, etc) to begin or finish a task
-Difficulties planning complex activities
-Catatonia
-Difficulty switching between activities
-Lack of apparent startle response
2. Difficulty in using language (at least 1):
-Problems with pronoun use that are developmentally inappropriate
-A reduced or lack of awareness of tone in self (ie, speaks in a monotone, childish, or otherwise unusual manner) and/or others (ie, does not perceive sarcasm or follow implied prompts, responds to rhetorical statements and questions in earnest)
-A reduced or lack of awareness of volume (ie, speaks too loud or too quietly for the situation)
-No functional language use
-Echolalia
-Mutism in some or all situations
3. At least one special interest in a topic that is unusual for any combination of intensity (ie, does not want to learn/talk about anything else, collects all information about the topic) or subject matter (ie, unusual, obscure, or not considered age appropriate). Topics may be age appropriate and/or common (such as a popular television show or book), but the intensity of interest and/or specific behaviour (such as collecting or organising information as the primary focus) should be taken into account.
4. Asymmetry of cognitive skills
5. Talents in pattern recognition, including music, mathematics, specific language structures, puzzles, and art.
6. A tendency to focus on details instead of the broader picture, across contexts.

C. These differences cause impairment and/or distress in at least one context (ie, school, work, home), which may be variable over time.
D. Symptoms should be present in early childhood, but may not be noticable until social demands outpace compensatory skills, at any age

Catching up on the last bit of Melbourne, the trip home, what I’m doing OMGRIGHTNAO and plans.

We went to Kate’s hens night, which involved thai and karaoke and a lot of overstimulation, and the wedding, which was beautiful.

We also went to a place trying to bill itself as molecular gastronomy coffee. It wasn’t, so much, but they did have test tube coffee:

looking pensive over coffee

Then I took some more pictures of flowers:

roses

I flew back to the US and it took forever, 10 hours of which I spent chilling in the SFO airport, which may be the most boring place on earth. I’ll make a point to go through LAX next time.

I did come back to my kitten, which is some consolation.

artfully backlit

under the covers

I got rid of GoDaddy hosting and signed up with ANhosting.com, largely because Hank Green told me to do it. It’s been a breeze and I’d reccomend them.

Currently, I am unemployed and living in Greensboro. Well, that’s a lie, right now I’m in Staunton visiting Stina and Dylan, but on the whole I am in Greensboro and loathing it, but it’s free and hopefully there will be jobs. There’s been a lot of drama about my car insurance and liscencing, but it’s over and I don’t want to rehash it.

ON JULY 1 I HAVE AN INTAKE APPOINTMENT WITH TEACHH, THE AUTISM PEOPLE IN NC. IT WILL BE FREE.

I’m super excited but also anxious for 2 reasons: 1. I worry it’ll be like Dr. Gaddis again, and 2. it might negatively impact my immigration. We’re waiting to hear from a lawyer, but this isn’t a full-on diagnostic appointment and nothing stays written, so I’m keeping this one and hopefully making the follow-up diagnostic appointment and then making decisions after Kitty has her surgery and can see again to visit lawyers. If I have to wait to get my papers before I can get my other papers, that’s fine. Australia has plenty of very good doctors in this regard and I’d be happy to see them. BUT THIS ONE IS FREE.

So…that’s all. Etsy sale on right now. I took lots of pictures that I hope will become my moo cards.

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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

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.

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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.