Note For Anyone Writing About Me

Guide to Writing About Me

I am an Autistic person,not a person with autism. I am also not Aspergers. The diagnosis isn't even in the DSM anymore, and yes, I agree with the consolidation of all autistic spectrum stuff under one umbrella. I have other issues with the DSM.

I don't like Autism Speaks. I'm Disabled, not differently abled, and I am an Autistic activist. Self-advocate is true, but incomplete.

Citing My Posts

MLA: Hillary, Alyssa. "Post Title." Yes, That Too. Day Month Year of post. Web. Day Month Year of retrieval.

APA: Hillary, A. (Year Month Day of post.) Post Title. [Web log post]. Retrieved from

Wednesday, November 18, 2015

Review: The Real Experts

Today, I'm reviewing The Real Experts: Readings for Parents of Autistic Children, edited by Michelle Sutton and published by Autonomous Press.

Or I'm reviewing most of it. The cover art is mine, and the essay on autism and language is also mine. I am not reviewing my own contributions, and will leave that to people who are not me. Suffice it to say that I would not submit an essay I disagreed with for publication.

Looking at the table of contents, I recognize many, but not all, of the contributors. Nick Walker, whose description of the neurodiversity paradigm I use frequently, wrote the foreward as well as contributing two essays in his section. Michelle, the editor and writer of the introductions (in addition to a short introduction for the book itself, each contributor gets an introduction,) is an online friend of mine. I know Emily. I am Alyssa, and I think I know myself. Kassiane, who coined the term "neurodivergent" because there's many ways to be neurologically interesting, has been a friend of mine mostly online, and we've met in person three times now. I've read Cynthia's and Sparrow's blogs. I've met Michael, Elizabeth, and Amy at conferences. Morénike I was not able to meet because of transit difficulties, but I was impressed by her distance presentation at Autcom. I don't know Ally or Briannon, but having read their pieces, I intend to look at their blogs now!

Nick Walker puts his metaphorical finger on the source of many issues autistic people face: the world isn't designed for people like us. Assumptions about what thriving means and about how you reach any given ideal of success were made with non-autistic people in mind and don't apply well to us. He reminds us of the "Golden Rule of Neurodiversity," modeled on the Golden Rule of treating others as we would want to be treated: "Respect the bodily, sensory, and cognitive needs of others as you would want your own to be respected, whether or not you understand the reasons for those needs." His words are important for those working with autistic children (or adults) to read, but what stands out most to me is not any broad statement on autism or neurodiversity. It's the title of a mix CD: The Logistic Difference Equation. I think I need to ask for the track list of that CD.

Ally, an autistic parent of autistic children, writes a letter to parents who are just finding out their children are autistic. She writes the letter she would have wanted to read. I love her words, and I love her metaphors. "Being autistic isn't being at a train station, it's being on a train." We learn. We grow. And maybe, just maybe, we ride trains. I ride a lot of trains, because I don't drive (yet.)

Emily tells us just how important it is to tell your kids they're autistic, because they're going to be different whether or not you tell them, and they're going to know they're different whether or not you tell them, and all you can do by hiding the word autism is make it harder to get useful information about how we work. Her essay is important.

Cynthia's got two pieces, one that reads to me like a (much-needed) questioning of the concept of socially appropriate, with stimming as the primary example, and another a specific defense of stimming. As a moderator of the mostly inactive Tumblr,  F, Yeah, Stimming, I am all in favor of stimming.

Kassiane writes about the unreasonable cost of indistinguishability from one's peers, that unattainable and constantly moving target that gets used as a reason that an autistic person must not really need whatever supports they briefly had. The lessons learned alongside therapy's consciously taught one of indistinguishability form unreasonable expectations, and seriously, do not do this to your kids.

Sparrow continues to write about therapy, specifically ABA, touted as the "gold standard" for autism treatment and therefore the label slapped onto as many kinds of therapy as possible, accurately or not. In an extremely useful move, she tells parents what to look out for in order to tell good therapists (meaning the ones who aren't actually doing ABA based therapies even if they're calling it that) from ones who are going to teach children that their bodies aren't really their own and essentially grooming kids for abuse.

Michael writes about the contradictions (and resulting problems) of being perceived as "not that autistic" while actually being ... that autistic. You see, being able to hide certain aspects of our autistic selves is very different from not having those aspects, just as much as it is different from not being able to hide them. She also has a perspective on what it means to be a teacher that is important for professionals as a whole to note: it's not about making her classroom as accessible and inclusive as possible for her, but for her students. If we (who supposedly lack empathy/theory of mind) can figure this out when teaching a mostly neurotypical abled class, well, y'all abled neurotypical teachers have no excuse not to understand this when teaching us.

Elizabeth writes from the perspective of a mother, on how things have improved since she was a child, and then on how she navigates social and sensory overload out in the world. Not "in her own world," but out in everyone else's world.

Briannon speaks to the exclusion she finds being Autistic herself, being queer, and being the mother of autistic children: queerness and autism both mean exclusion from the typical heterosexual mothers groups, disability from the queer groups, autism as identity and queerness both from the typical autism parent groups. So she builds her own space, and will fight to defend it. She speaks to the importance of having such a space, because the rest of the world isn't that space.

Morénike writes about the importance of social media, challenging the idea that it is somehow fake and that getting off social media and going out is more "real" than the interactions that happen online. This piece is not directed exactly at parents, but at people in general, and the anti-social-media backlash in specific. Given the social and sensory overload that Autistic people frequently deal with outside in the "real," world, a challenge to the idea that things online are somehow less real is needed for Autistic people and those supporting us. Offline isn't always accessible.

Amy writes about attitudes. Not so much the attitudes of the disabled person themself, but that of others around us. Attitudes in general, attitudes towards our communication (when does it get to be seen as real?), attitudes about our value as people and how it is tied to a system of grading people as more or less similar to able people. Given how much the attitudes of people around us show in the supports we do (or don't) get, and in the expectations for our educations and lives, attitudes seems a good way to close out the book.

Every essay was great. Every essay said important things, without much in the way of duplication, but with connections between some essays. I definitely get why Michelle chose the pieces she did, and I am glad all the contributing authors said yes to this use of their work. Seriously, my TL;DR: version of the review would be "Go get the book now."

Tuesday, November 17, 2015

URI Honors Colloquium on humor and disability

Every fall semester, the University of Rhode Island has an honors colloquium in which they run a lecture series around a topic, and the lectures are open to the public. This semester, the theme is humor, and tonight R. Bruce Baum came to talk about disability and humor. I was nervous at first, because I looked him up and he's a professor emeritus in a special education department that won't even call itself that -- it calls itself an exceptional education department. I was also nervous because, so far as I could tell (and I was confirmed correct at the lecture,) R. Bruce Baum does not have a disability himself. I still feel it would have been better for the Honors Program to get a disabled comedian or disabled humorist to speak on the topic of humor and disability, but that is a separate concern from whether or not Dr. Baum did a good job with his talk that actually happened. By and large, I think he did.

One of the things I liked about his talk was that he used a lot of examples of comedy by disabled people. He mentioned the comedians with disabilities act, and he mentioned the work of John Callahan, Dan Wilkins, and Michael Giangreco, along with other comedians with disabilities. His examples of modern disability humor, of good disability humor, came from disabled comedians. He included comedy that pokes fun at the special education system, which was another pleasant surprise.

That's not to say everything was perfect. He does come from a special education background, and as such he unsurprisingly seems to think person first language is more widely expected and wanted by people with disabilities than is actually the case. It's not a bad rule of thumb for disability in general, and it really did start with self-advocates, but the particular example he gave, in a pretty common error, was one of the disabilities that actually frequently goes with capitalized identity-first language. (Whoops.)

He also asked audience members to make eye contact with each other and shake hands with each other at the start as a sort of engagement thing. Eye contact and engagement are not actually the same, speaking as an autistic person. He did recognize that not everyone in the audience would be able to stand, which was nice, but I'd have liked some recognition that not everyone in the audience can make eye contact either. Autism isn't even the only disability where eye contact could be an issue, not to mention cultural differences.

And there was one potential benefit of humor that I think could have been done better. It's not even that he's wrong about it -- humor absolutely is good for an appreciation of life in general. It's just that the way he says it, it really came off as able people telling disabled people how to be better at being disabled. Humor can apparently "assist persons with disabilities to develop an appreciation for living," and honestly this reads a bit helpy helpers who help-esque to me.

Still, the bits that made me go "ehhhh" were comparatively short (probably five minutes total between the three things, in an hour long event) and I spend quite a bit longer fist pumping at cool stuff, like the T-shirt that read "severely normal" and cartoons poking fun at pity narratives as well as at assumptions about disability in general. I liked how he pointed out the differences between using disability as the joke, as happened with the speech disabilities used in Looney Toons, versus disabled people making jokes about their disabilities and about others reactions to their disabilities.

The historical bits were interesting as well. He didn't shy away from the fact that institutionalization is a big part of disability history, and he talked about both the exploitation of freak shows and the fact that some people with disabilities who were in freak shows chose to be there because they considered it a better option than the work house or the poor house or the institution.

Overall, I'm glad I went, and while a lot of the explanations of the humor were directed at the audience he (probably correctly) assumed was mostly abled rather than at disabled people, the examples of disability humor he gave were really good. Better yet, he came right out and said that he knew better than to speak to a disabled audience about disability humor, because they were the ones who'd be creating it, not him.

Sunday, November 1, 2015

Autistics Speaking Day 2015

Autistics Speaking Day 2015 was a day when I did not speak aloud.

Not because I couldn't.

Because I didn't need to.

I used social media sites to talk to the people I wanted to talk to, today.
I rode my bicycle around the town, exploring, and then I sat and watched a river flow by, today.
I worked on applications to PhD programs, today.

And because I did not spend the energy on speaking aloud, I have the energy for other things.

I write.

Today, like every Autistics Speaking Day, is November 1st. That's the first day of National Novel Writing Month. I am a bit of a NaNo Rebel this year, because what I am working on is not a novel, but I am participating. I have quite a bit of writing that I am working on -- statements of purpose and personal history statements and various other essays that I need as I apply to PhD programs, short fiction with autistic characters, either of the two novel ideas I've got on the back burner, blog posts, poetry, narrative of some sort for Autonomous Press -- the list goes on, I'm sure.

I read.

Like most writers, I read a lot. I read fiction, both in the genres I write (science fiction and fantasy, mostly) and in other genres. I re-read Watson and Holmes: A Study in Black today. I started reading Accessing the Future today. I read blogs. I read non-fiction. Right now I'm reading Biopolitics and Utopia, and also Neurotribes.

I meditate.

Like many Autistic adults, I have pretty bad anxiety. Meditation isn't a miracle cure, not by any stretch, but it calms me down a little. One more tool in the box is always handy, in any case.

I speak, metaphorically.

Because I have the time and energy and platform to do so, I can tell my stories to anyone who'll listen. I can tell people how oral speech doesn't matter that much to me, that whatever they might imagine being unable to speak is like (for the folks who have to imagine), that's probably not how it is for me.

Here's the thing:

I don't actually care when speech gives out on me, not in itself. I might be annoyed about the reason, like when flickering lights gets me. I might be frustrated if it's disproportionately hitting one activity (sorry, measure theory.) I might be scared if I'm around people whose reactions to speech going offline are as yet unknown, because sometimes people do react poorly. I might need to think about the logistical question of how best to communicate without speech, if it's the first time I've needed to in a given environment.

These are all different from being upset about the inability to speak. Some of them boil down to being upset about ableism, whether about access barriers or about biases against people who don't speak with their mouths. Even the logistical question could fit under that category, since there'd already be an easy answer if society were really set up for people who don't speak orally.

My concern about disproportionately losing speech during one particular class I'm less certain on how to classify. Partially, as much as the professor and my classmates seem to be totally fine about my not always being able to speak and my writing on the side board instead when I can't, I'm worried about what they're going to think. As a teaching assistant, I teach a class, face-to-face. As much as I know teaching without speech can be done, as much as I know people who do it, I haven't done it yet. Not classroom teaching with 30-50 students in a lecture, while I can't talk.

I've done tutoring without speech, and I gave a conference presentation without speech, but I've not done regular classroom teaching without speech yet and I don't really want my colleagues wondering how I would manage that until after I've got an answer I know works.

Whatever it is, it's still not finding the inability to speak inherently frustrating. And I've solved the logistical questions for most of the environments I spend much time in.

And here's what I don't do:

I don't purposefully avoid methods of communication I know I can use, and effectively. I don't think that doing so would teach me what it's like not to be able to use those methods, because times when speech is working fine but I am choosing not to speak for some reason (someone else is talking, sore throat, not actually having anything to say) are very different from the times when speech isn't working.

That's what Communication Shutdown would have been, and it's what taking an hour of silence (at a time you choose, too!) to try and understand what it's like not to always being able to speak would be. 

Saturday, October 31, 2015

#AAC Awareness Month: When speech output isn't best

First, an explanation of the abbreviation. AAC stands for Alternative and Augmentative Communication, and it's the fancy professional word for how disabled people communicate when we can't talk or when speech alone isn't meeting our communication needs. I've written before that I'm not a huge fan of it being considered alternative because that implies speech as a default. I still have that issue. However, I am a huge fan of people knowing more about the ways we communicate when speech isn't working or isn't enough, and I am a huge fan of better support for folks who use communication methods other than speech.

I am usually able to speak. I am often highly verbal. I am reasonably fluent (but not always speaking) in two languages --English and Mandarin Chinese. I am definitely literate, and I type about 60 good words per minute. That's not typical conversational speaking speed of typing, but it's still pretty fast, at about 85th percentile of typing speeds overall.

I have several methods of communicating when speech isn't working. Two of them have speech output: eSpeak on my laptop and Proloquo4Text on my iPad. These two see the least use of all my AAC options. Not the most. The least. It's not because these are the wrong sorts of speech generating devices for me, either. I have iPad, laptop, or both with me most of the time as a college student. As a quick typist with little use for visuals and a good understanding of language in general, typing out what I want to say is faster than searching for saved phrases. Word and phrase prediction are handy and can sometimes speed things up, but Proloquo4Text has that capability.

It's not that these are the wrong speech generating devices for me. It's that my speech generating devices are not usually as effective as my other AAC options, in the environments where I spend most of my time.

That still leaves the question of what I do use, because I absolutely don't just stop communicating when speech stops working! And I don't hide away, either. I still go to class. I still present at conferences. I still go to sports practice, and I still get on the field and play points in Ultimate (Frisbee) tournaments.

In my math classes this semester, I sit in the front row all the way to the right. Because of the classroom set-up, I can reach a side board from my seat without needing to get up. I carry a white board marker, and if speech isn't meeting my communication needs, I'll uncap my marker and write on the side board. I came to this solution when speech went offline unexpectedly in measure theory (one of the math classes I'm taking this semester) and needed to improvise. Since then, I've brought the iPad to class a couple times and even tried to use it once. I've found the board to be the better choice.

I also write on a white board in my office, in my classmate's offices, and in the graduate lounge. I answer questions about our homework assignments and have full conversations this way, just not very loudly since writing on a white board is nearly silent. I tutored someone in real analysis (senior math class) writing on my office white board once as well. The white boards in the math department get quite a bit of use from the times when speech isn't working for me.

Picture of me writing "This is my most used communication board" on a white board. My shirt reads "My other disability is a bad attitude." 
Take yesterday for an example. Two of the lights in my building started to flicker, and completely predictably, this did a number on my ability to talk. As soon as I saw the first light, I reported it (seriously those are a safety risk, photosensitive epilepsy exists, my losing speech is nowhere near the worst thing that could happen because of a flickering fluorescent.) I also knew that I needed to make sure I had a workable communication method other than speech at all times for the rest of the day. As it turned out, speech stuck around until about 1pm, then I got it back briefly around 2:40. It went kaput again right before 3 and came back around 4, after which it was iffy but extant for the rest of the day. Two of the three no-speech hours, I wrote on a white board to communicate. Writing on a white board is definitely my most-used "AAC."

It's also something every single one of my colleagues does as a supplement to their communication when teaching, but it doesn't go under the "augmentative and alternative communication" umbrella when they do it. I think that's because it's not alternative or unusual for a teacher to write on a board while speaking, but it is unusual for a teacher to write on a board while not speaking.

After writing on the white board, my most-used communication method is probably Flip Writer, on my iPad. This is an application designed for use as AAC, unlike the white board marker which was not designed with disabled people in mind. When I'm having a conversation one on one, probably sitting down, where it'd make some degree of sense for us to be on opposite sides of a table, I'm using Flip Writer. Yesterday, when I wasn't expecting speech to stick around, I brought my iPad to lunch with a professor. (Lunch wound up being the last thing I did before speech went.) I actually used Flip Writer yesterday before seminar to talk to a classmate, and I used it at Autcom to order food at a restaurant when I couldn't speak.

Next up is regular old pen and paper. I've used this at ultimate practice a couple times to talk to a captain or the coach, and I've used it when I didn't have the iPad with me and either didn't have my laptop or didn't want to take it out for something fast.

Now we get to my speech generating software. I tried Proloquo4Text once in measure theory. Once. Technically it was after class had ended, but everyone was still in the room. I tried it for one sentence and went straight back to the white board I could reach from my seat. I do use Proloquo4Text on the side lines at Ultimate (Frisbee.) I also used it meeting with my department chair when I needed a permission number to register for measure theory. I typically use Prolquo4Text when I'm in a small group, want to address everyone in the group, and don't have easy access to a white board.

I use eSpeak for similar reasons to Proloquo4Text, under similar circumstances. The big differences between eSpeak and Proloquo4Text are that my laptop takes more time to set up than my iPad (point for Proloquo), my laptop has a physical keyboard while my iPad does not (point for eSpeak), eSpeak doesn't have word prediction (point for Proloquo), and eSpeak can generate speech in Mandarin Chinese (point for eSpeak). Proloquo4Text currently can't do Mandarin, so this probably the biggest reason I use eSpeak. It works with Chinese. (So does Flip Writer.)

Wednesday, October 21, 2015

(Sometimes) Wearing Pride on My Bag

I am fairly open about being Autistic, about using AAC (Augmentative and Alternative Communication) both online and offline. Fairly open. When I am a student in a classroom, the teachers know, and most of my classmates usually know too. As an athlete, my coach knows and my teammates are aware if they remember. As a person on my college campus, people who look at my backpack may well see the buttons -- usually.
Purple backpack with three buttons on it."Our homes not group homes" is obscured by glare, while "disabled & badass" and "I USE AAC" are legible.

As a teacher, my supervisors know. My students don't.

Or at least, I haven't told them. I put some thought into arranging my schedule so that speech is still working while I teach, face-to-face, in the classroom. I don't tell them that speech going kaput on me can happen sometimes, so if it ever does happen, they'll be finding out it's possible right as it happens. I don't tell them I'm autistic. I only tell the ones who are seeking accommodations and seem nervous about it that I'm disabled at all, and the information they get is that I am also registered with disability services. Not that I'm autistic, not that I use a speech generating device part time, not that I can't always speak.

I take the buttons off the back of the backpack before I go teach, and I put them back on after class.

I know full well that my department would back me up if some of my students found out that I'm disabled and decided to take issue with it, and I suspect that most of my students wouldn't take issue, but there are some chances I am not ready to take.

My buttons represent my disabled pride. I remove them to teach because pride is an act of bravery, and I only have the energy to be brave some of the time. Not all of the time. 

Sunday, October 11, 2015

Educational experiences interview

Today (October 9 as I write this) I participated in a follow-up interview for a study some folks at my university were doing on the educational experiences of students with disabilities.

The interviewer defaulted to person-first language. Which, whatever, I don't actually care what you default to as long as you can handle the part where some people in the population you're referring to will have a different preference, and even for reasons! Those reasons tend to relate to the particular ways people have dehumanized us, as well as with community identities.

However, what I found interesting was that one of the things he said was, "You said last year that you identified as a person with autism--"

I don't know where he was going with that because I interrupted him. No, I guarantee you that I did not say that, because I didn't... a year ago I already had quite a few posts on my blog about why I don't identify that way. Since one of the big things from the interview is how we identify and I have literally never identified that way, that was an important thing to get right. Nope, nope, nope.

I identify as Autistic. I identify as an Autistic person. I didn't say this one in the interview, but when I'm feeling particularly snarky, I'll even sometimes call myself an "autism whose life experiences coincide with the diagnostic label of personhood."

Since the general focus was educational experiences (as opposed to identity as a big sub-focus, but still a sub-focus) that bit was a fairly short part, but it's one of the things that stuck out to me.

He also asked me about how I handled the not-always-able-to-speak deal, since I'd mentioned that I can't always speak and that it's mostly a logistics issue for me. As long as I still have a good way to communicate and do what I need to do, I really don't care if speech is working or not. (I''m still working on the logistics for classroom teaching with large, face-to-face classes, but as a student and as a tutor it's definitely not an issue.)

For my two graduate math classes this semester, I sit in the front row on the right side so that I can reach the side board in the room from my seat, and I carry a whiteboard marker with me. That way, if speech stops working but I want to say something, I can write on the board and everyone can see it.

Another bit I noticed is that he (like most people) seemed a bit surprised by the extent to which I will joke about pretty much every aspect of my disabilities. Pattern recognition tells me that most people, especially enabled people, are going to be surprised by that one, but it always sticks out to me just how much people expect disability to be so serious, all the time.

Nah, I'll crack jokes, because a lot of the issues either genuinely amuse me and because many of the ones that don't fall under laugh to keep from crying territory.

The way one of my teachers this semester, who I'd had a couple times before, reacted the first time he saw speech go kaput on me was one of the genuinely amusing ones. (He refers to it as being "offline," which isn't my word but as long as we're clear on it just being speech that's offline I think it's as good a word as any.)

See, I corrected all of the typos he made on the whiteboard... from my seat, without speaking because I couldn't. He'd written the "element of" symbol instead of the "subset of" symbol a few times, if I remember correctly. Anyways, after I got them all, he told me to "be quiet!" He was laughing, so I wrote on the side board, "But I'm not talking!". So he said I knew what he meant (true.)

The next day, I went to check in with him since he'd never actually seen speech give out on me before. His one question? Whether or not he'd been too hard on me about it. I'm not actually sure what he did where he'd worry about that, since I'm fairly sure I'd have gotten a laughing "be quiet!" type reaction had I done the same thing while speaking... but that's a whole lot better a concern than whether or not I'm OK to be in class when I can't speak (yes...)

Finally, I thought it was interesting (and definitely good) that he asked what advice I had, both for students and for educators. For students I said to remember that smiling, nodding, and doing what you want anyways is absolutely an option, and also that when people are talking about evidence supporting various strategies, look closely at what the evidence is of: no matter how much evidence anyone has that they can get you to a particular goal, it's not relevant you don't share that goal.

For educators? I said to remember that students at least sometimes not doing what they're told is totally expected, because 1) students are people with potentially different goals than you, and 2) sometimes we are literally not capable of doing the thing. When it's the first, that's not a disability issue, and when it's the second, consequences won't make us magically gain abilities. 

Friday, October 9, 2015

And then I played sports

No, really.
I'm not good at sports, but I play on my universities ultimate (Frisbee) team. I have every year I've been on campus, except the semester that I had a broken foot.

I am also a part time AAC user, because I'm not always able to speak, and I'm also dyspraxic, and I tend not to process movement as quickly as my teammates.

This year, because the incidence of injury has been increasing (I broke my nose playing this sport in high school, but the worst that's happened to me in college is getting cleated) all of the players had to do a concussion recognition training. I actually think this is a good idea, but I needed to clarify a few things for my teammates and coach because the training assumed a neurotypical player for their baseline.

This is pretty much what I told them, shared in case it comes in handy for any of my fellow autistic athletes. I know more of us exist.

  1. Changes in speech: If speech is completely gone, or if it's slow and halting, this means very little. These could happen as a result of a major injury, but these could also happen because I am tired, hungry, thirsty, hot, cold, sore, stressed, or because I made actual eye contact with someone. 
    1. HOWEVER, if my speech is slurred, that is a sign of something unusual. My regular language issues don't include slurred speech.
    2. HOWEVER, if I'm also having trouble writing or typing beyond the expected difficulties doing so in the current level of cold, that is a sign of something unusual. My normal-for-me instances of speech going kaput leave typing and writing unaffected.
  2. Appearing to move clumsily: I'm dyspraxic. Any way of moving that I haven't done many times, and recently, is going to be clumsy. Flapping my hands is also TOTALLY NORMAL, along with rocking.
    1. HOWEVER, if I'm clumsy at something I normally do smoothly, like throwing a flat forehand, that is a sign of something unusual.
  3. Appearing confused on the field: I process movement a bit slower than most people. My pattern recognition is good enough that I can cover for this when everyone is moving in patterns I recognize, at which point I can even appear to have faster than average processing and reflexes, but I don't.
    1. HOWEVER, if I'm showing confusion about plays I've mastered, that is a sign of something unusual.
  4. General overload (same causes that lead to my losing speech) can reduce the threshhold for clumsiness or confusion. So if I only recently mastered a way of moving or only recently mastered a new play on the field, and then I'm overloaded, me falling apart at those isn't actually surprising.
  5. I will show behavioral changes that indicate (nearly all) injuries before I am aware of being injured. So if I seem to be favoring an injured leg but haven't said anything about an injured leg... ask me. If you get me thinking about the leg, and it's injured, I might be able to tell you that I'm injured, even if I hadn't noticed it before.

Wednesday, October 7, 2015

Computer Assisted Translation and Cognitive Interpretation

This semester, one of the three classes I'm taking is a programming class meant for scientists, rather than for computer science majors. (I'm only taking three classes! What is this?)
This is pretty cool, because it means I'm with other graduate students, and also everyone realizes that they need more programming skills than they have.

Our final projects are all supposed to relate to our research, if at all possible. As a masters student in math, I don't have official research with my department currently, but I do have research interests through the disability side of things. I'm interested in cognitive interpretation, like what Neurodivergent K is describing here, and in treating disability-related communication barriers as translation problems. (Sign interpreters totally already do this, so this is not a new idea, not on its own.)  In full generality, this would be a huge project and nowhere near appropriate for a semester, but by taking a smaller project, like applying one already existing translation-related technology to communication barriers similar to those I face, I can hopefully get somewhere this semester.

I'll be looking at Computer-assisted Translation (CAT), which already has software to support it. The idea behind computer assisted translation is that sometimes you need to translate a sentence, phrase, or communication similar to one you've needed to translate before. The software that is assisting the translation finds similar phrases that have been translated before, finds what their translations were, and suggests those translations.

Because the translation or interpretation that a cognitive interpreter is doing is between a "standard" dialect and the (non-standardized) communication patterns of a disabled person, we can't really draw on most already existing translation histories. However, relevant translation histories could be created. It may well be possible to give the software some translation history based on the interpretations of a human interpreter, and because certain communication traits are more common among people with particular conditions, it may be possible to create "starter" or "default" translation histories that come with the software. I think that including translations or explanations of common internet language uses would make sense, as one example -- many Autistic people, including myself, are echolalic, an plenty of us tend towards code mixing rather than code switching, which means we may well use internet language in contexts where it won't be understood.

I could also try to bring in comparable corpora, which is something I've been reading about in Comparable Corpora and Computer-assisted Translation. The idea behind comparable corpora is that when people are writing or speaking on a given topic in their own language, this reads and sounds different than translations from other languages do. By using texts on similar topics which were originally in different languages, we can have translations with less "translationese" in them. I think bringing in comparable corpora is unlikely this semester, but that I do want to incorporate it eventually.

Interfaces could also be modified to better match with use by people whose disabilities affect communication and who might not be experienced at translating documents between "standard" languages. (I have some translation experience for personal use, so I do know that this sort of experience is not mutually exclusive with communication disabilities.)

I found one computer assisted translation program, Virtaal, which is free and open source, written in Python, the language we're learning in the programming class. Because Virtaal is a many-file program with a graphical user interface, there's a lot going on in that program that I don't understand yet. My project is going to be based very heavily in learning to understand the code for this already existing program, which I'll then try to make some modifications or additions to over the course of the semester. I'd like to do even more with it later -- I want this software to exist already, and I want it on my laptop, fully functional, now. That's why I'm trying to build it!

Friday, October 2, 2015


Apparently my presentation at Autcom is the part that I'm able to write about. For the ways things were done wrong (and were they ever done very, very wrong) you can read Neurodivergent K's post, Turtle is a Verb's post, Mitchell's post on a blog I think he might have created just to be able to write this mess up, Beth Ryan's post, Expectedly's post, or the ASAN New York statement.

Let's just say that Neurodivergent K was my roommate and one of my co-presenters, and that Beth Ryan was our other co-presenter. And by "our other co-presenter" I might mean the one who got the panel organized? I'm not sure beyond "it wasn't me."

Because of what happened the Friday afternoon and early Saturday morning of the conference (see the posts I linked at the start,) my ability to speak was cutting in and out most of Saturday morning. I know from experience as a math teacher at my university that so long as I have speech when I go "onstage," I will retain speech until I go "offstage." I put the onstage/offstage in quotes because it's not exactly about a stage, at least not a literal one, though it is about a sort of performance.

However, what I did not know was what would happen if speech was already gone when I went "onstage." Since I put in some effort towards making sure speech is still around when I start teaching math classes at my university, and since that effort had always worked (it's not that hard to avoid things that'd cause speech to go kaput on me for the first 3 hours of the day when I have a single room and am just working on lesson plans and/or grading,) I had no reason to know.

Now I know. Thanks Autcom. (That's sarcasm, by the way. I am not actually grateful for this knowledge.)

If speech is already gone when I go "onstage," it doesn't necessarily come back. It didn't for my presentation.

I had brought my laptop with me for the slides, so I'd already been planning to hook my laptop up to the projector. This was good, since I was then able to open up Open Office on my laptop, make the font bigger, and present by typing into a text document. I switched the screen back and forth between the text document I used to write to the audience and the slides my co-presenters and I were using, as relevant. If I had something to say, I had the document up, and if my co-presenters were talking about something to match a slide, I had the slides up.

Before presenting, but after I had hooked up the laptop, I was working on a piece for The Autistic Exchange, which is a fanfiction exchange by and for Autistic people. I won't claim it was my best work, but the people who were in the audience waiting for my panel got a bit of a preview. If you want to read it, the authors for the collection have been revealed so I can tell you which one it was. Here it is!

The presentation went well, and we tied some examples from the Autcom mess into what we were talking about on the panel, which was how partnerships between parents of autistic people (who may be autistic themselves) and autistic adults (who may also be parents) can work. The Autcom examples were not the positive ones.

I also cracked jokes while presenting. I told people about how I got a teacher to tell me to "be quiet!" when I wasn't actually able to talk. Without context, this seems like it'd likely be bad, but with context, I was amused and I think the teacher was too, considering that he was laughing while telling me to be quiet. I was correcting every single board typo and that the teacher would have been treating my writing to communicate differently from other student's speech had he not told me to shush. He was just imprecise with his terminology, in a math class where he talks about how important precision is. Therefore, I found him telling me to be quiet most amusing.

Post panel, Neurodivergent K and I were kind of cornered together by this Sandi person. I wound up typing to her about stuff that would have been an OK conversation if it weren't for the part that she was totally trying to pretend everything was cool without actually doing things to fix the things. That made it a very stressful conversation instead.

After the panel and cornering were both over, I found out that I "inspired" someone. Before you do the spit-take and wonder who is about to get verbally eviscerated, the answer is no-one. This was one of the few examples of "inspired" where I totally agree with the word choice. I apparently inspired another Autistic adult who would benefit from using augmentative and alternative communication part time to do so, and more openly. I'm cool with serving as that sort of inspiration.

Thursday, September 24, 2015

"Can't" is Actually Important

All these thoughts were brought up again in the context of sports, because one of the coaches for my ultimate team said that we weren't ever supposed to say "I can't," at practice. I'm fairly sure that was supposed to be empowering, and I'm just as sure that for me (and probably for a whole lot of other disabled people) it's actually terrifying. Thankfully, I was able to explain to the coach and have her understand why no, I really do need that sentence in my vocabulary, and I need it taken seriously when I use it. Bad things happen otherwise.

Part the first: What I find easy vs. hard vs. impossible doesn't line up very well with what most people find easy vs. hard vs. impossible.

This is the part where "differently abled" is a technically accurate description of my abilities, and the existence of societal factors putting values and expectations on certain abilities is why I still refuse to call myself differently abled. I wrote a post about that a while back.

However, this is mostly the part where the failure of my easy, hard, and impossible to line up with that of anyone else means that my abilities are apparently incomprehensible to a significant portion of the world. The idea that I can do calculus but not organize my own locker (not actually related skills in any way, shape, or form) or that I can be decent at Ultimate but not able to jump such that my feet leave the ground together and land together (therefore not actually a prerequisite skill, but I can at least understand why people assume so) is apparently incomprehensible.

This means that when I say I can do one thing, but not another, people are too busy being confused to accept this, and cognitive dissonance leads to my can't getting ignored.

Part the second: What I find easy vs. hard vs. impossible doesn't even always line up with what I find easy vs. hard vs. impossible.

That is, my abilities vary over time, and hugely so. Speech is the big example here, that on my best day I can win a face to face debate in class without preparation by explaining why my opponents evidence actually supports the position I was assigned, and then there are also times when I can not speak at all. There's also a huge amount of middle ground, where I spend most of my time. That middle ground includes things like how much I can say that's not scripted, how quickly I can get words from my head to my mouth, how obvious it is that my prosody is weird, and whether or not I can initiate a conversation.

The way my abilities get prioritized also doesn't match with that of most people, so the way my ability variation happens can confuse people. For most of my classmates, the ability to concentrate on graph theory homework or measure theory assignments would go long before speech did. For me, I have repeated evidence that speech goes long before my ability to pay attention in class, write papers, or do homework does.

Part the third: Not recognizing "I can't" is used to deny access needs.

This one is common. A person has an access need. I have an access need. We all have them, but sometimes when they're statistically less common, the fact that it is a need is ignored. No, I can't depend on always being able to speak. That's why I carry pen and paper, and that's why I carry the iPad. No, I can't tell people apart by their faces. That's why it takes me so much longer to learn people's names. No, I can't organize my own locker or desk or room independently. That's why I need help organizing my space. No, I can't consistently remember to eat three meals a day without reminders. That's why I need some sort of reminder system.

For some of these "can't"s the access need is that I have a work-around and just need people to get out of the way while I use it. However, when the people or institutions around me refuse to recognize the "I can't" as legitimate, either because can't is generally not accepted (hi, sports coach who had no clue what kind of disability issues sat around the issue of "can't") or because the specific inability is one that I'm not allowed to have for some reason.

Part the fourth: Deciding that a "can't" is actually a "won't" leads to very ineffective and very scary discipline.

When I was in school, some of my teachers recognized that I actually couldn't independently keep my locker organized and not full of piles of papers. So, once in a while, they'd pull the trash and recycling bins from their classrooms after school, sit down with me next to my locker, and help me deal with the mess. Together, we were able to get my locker back to a semblance of order.

I also had teachers who thought I just didn't care, and if they were smart about choosing the consequences I'd magically get my locker clean. This ranged from sitting me down and telling me I couldn't leave until it was done (ended with my crying in the middle of a pile of my stuff in the hall until one of the teachers who had figured out it was a couldn't found me) to having my enrollment in an appropriate math class held hostage to my "getting organized." That one ended when my eighth grade teacher finally realized that this clearly wasn't working, and that this was not an acceptable consequence to use anyways. It turned out that there actually was no appropriate class to enroll me in at the middle school, so they gave me an independent study that year. The idea was that I'd use the independent study to learn what was left of geometry and to do whatever math-related things caught my interest, and that I'd test out of ninth grade geometry when I got to the high school, taking Algebra II with the tenth graders instead. I actually tested out of two years of math and took Precalculus with the eleventh graders -- even when they realized that an appropriate math class meant grade-skipping me, they underestimated how far ahead I really was.

And remember, this is me getting off easy. No one hit me. No one tried to prevent me from accessing the mainstream curriculum (the mainstream just happened not to be appropriate for me in one subject.) No one decided I wasn't really ready to be a legal adult. I was "only" left to cry it out and I "only" had the stuff I could do held hostage to the stuff I couldn't do.

Sunday, September 13, 2015

Back to School

I'm now a (partial) week into the fall semester, taking three classes, teaching one, playing Ultimate, and applying to doctorate programs. Since I'm wanting to combine disability studies (already an interdisciplinary field, though mostly humanities) with engineering, finding one department I can apply to is tricky. I expect finding an adviser is also going to be tricky, for similar reasons (I have some ideas of who I might like to work with, but they tend to be in departments I can't realistically get into, so even if I'm working with them, they're unlikely to be my on-paper adviser...)

Still, this is probably the lightest workload I've ever had for a semester. I have Monday and Wednesday mornings off, and Ultimate practice is literally my only Friday obligation most weeks. That means I can actually wear my disability scholar hat during the semester, which I wasn't able to do last year, and it means that I have time to have things go in unexpected directions without everything falling apart in new and interesting ways.

As far as teaching goes, I have one section of basic algebra and trigonometry. It's a different class from last semester, so I need to do new lesson plans, and I'm teaching Tuesdays and Thursdays rather than Mondays, Wednesdays, and Fridays, which means longer classes but fewer of them per week. So far we've met once, and I've gotten the online math homework set up for the first chapter. I also had trouble getting the door open for the first day of class because we meet in the building with weird doors that have twisty handles that then don't actually twist even when the door is unlocked. It's also literally across the street from my dorm so I have the shortest walk of anyone to go to class, which is convenient.

On the student side, I'm taking measure theory, which has something to do with Lebesque integration and integrating badly discontinuous functions. It's also got something to do with ideas of size for weird sets that don't really have length, like apparently the Cantor middle-third set is uncountably infinite but also has measure zero. That is weird to me. That one was originally going to be Mondays, Wednesdays, and Fridays for 50 minutes each meeting but is instead going to be 75 minute meetings on Mondays and Wednesdays. I'm happy because that means I will get to slightly more of Ultimate practice this week when I can start walking before practice starts instead of from class an hour into practice.

I'm also taking a graduate level probability class that will use some measure theory things -- I think most of my classmates for that class have either already taken measure theory or are in measure theory with me now. I've taken probability classes before that involve calculus, even multi-variable calculus, but they were a while ago (Fall 2010,) comparatively light on the proofs, and different from measure theory, so I suspect I'll be learning a lot in this class. It's a Tuesday and Thursday class, and I generally have something else going on about half an hour after this class so I have a break but am not done for the day.

The last class I'm taking is programming for scientists. I've got more of a computer science background than is strictly expected for this class, but I also don't have enough to reasonably go into anything that has programming ability as a prerequisite, so this should be a comparatively easier class. It meets once a week, on Tuesdays.

Programming is not the class I was originally planning to take as my third, though. I was planning to take multicultural psychology, but I've heard that the teacher for the section of that class I'd signed up for is not great about anyone who is "different," and that there have been issues in the past. I was tempted to take the class anyways and be the pain in her ass who makes her deal with accommodations, but I did that at Tianjin Normal University all of the '13-'14 academic year and I don't particularly want to do that again this semester while also applying to graduate programs. I might be willing to get into fights over basic and important stuff like my being able to type or write and have a person or computer speak my writing for me when I need to, but I can't actually deal with everything ever at once so someone else can have that battle if they want it.

I turned in my submission for the Spoon Knife Anthology from Autonomous Press, claimed a pinch hitting assignment for the Autistic Exchange, and I'm trying to edit a paper of mine for a journal submission but it's kind of scary. I'm also working on a chapter for a book, plus fiction stuff. Maybe I'll even give NaNoWriMo another shot come November, since I have such a light course load and all the writing stuff I have going on is either due by the end of September or doesn't have a specific due date at all. 

Sunday, August 23, 2015

In which summer involves doing things

Many things. This post is going to mostly be updates about "I did X, Y, and Z" this summer.

I went to the Computers and Writing annual conference in May, as you might be able to guess from the fact that the last post on here is my notes for one of the sessions. While there, I participated in the digital rhetoric collaboratives wiki quest, and I was one of the winners from that. As such, I got a book! Yay, books! I also reviewed two sessions for the collaborative: D5: Disability and universal access, where I got to watch Sam Harvey be awesome about demolishing the nonsense that is most applications of theory of mind. I've written a little bit about turning the concept inside out, a while back, when I asked if Autistic people might spend more time and effort guessing the mental states of others than neurotypical people do, and Sam seemed to be focusing on the ways the concept and rhetoric around it get applied as an oppressive force. I also got to meet Dani, another autistic academic, who then proceeded to write about me as the "Friend." That was cool too.

The other session I reviewed was F8: Refashioning and reimagining community identities: Performance and online spaces. That was cool because both panelists were members of the communities they were doing research about, and they got to talk about issues related to that, plus they just had really interesting projects to talk about.

I also presented about plainer language in calls for participation as an important thing- the idea of nothing about us without us includes making it so we can understand the questions being asked and therefore know what even to contribute! And then I chaired a panel after that, which was cool. Back to back panels on the last day of the conference for the win!

Shortly thereafter, I went to the Society for Disability Studies (SDS) annual conference. I was on the Digital Access Facilitation Team (DAFT) which was fun and worthwhile but also exhausting. And, just like at Computers and Writing, I was on back to back panels on the last day of the conference (this time immediately followed by tweeting two panels in a row for DAFT.) Here, one panel was on my more scholarly stuff, wanting to create software based around treating disability related language issues as a translation problem rather than something that the disabled person is 100% responsible for "fixing." The other was more on the activisty side of my stuff, talking about some experiences with disclosure on a panel with a pile of other autistic people.

Also at the SDS conference, we got to see Autonomous Press launch. I was at the launch party reminding everyone ever that I did the cover art for Typed Words, Loud Voices. On that note, did I mention that I did said cover art? It's a good book. Since my birthday is coming up, I will say that people who want to do a thing for my birthday are more than welcome to go get a copy for themselves or to donate to a library that will put it on their shelves. Given the funding structure for the upcoming Spoon Knife anthology and my plans to submit to it, this is even a semi-directly self-interested idea for what you can do! (Yeah, if I get a piece into Spoon Knife, I get more for it if more people buy Typed Words. I have a vested interest in people getting it, beyond also honestly wanting more people to read it.)

I wrote an abstract and submitted a piece for the INSPIRe annual virtual conference, entitled "Democratizing Disability Innovation." I plan to edit that piece and send it... somewhere. Not sure where yet, but I think it's worth sending somewhere. I started working on my piece for Spoon Knife. I did some editing on my piece on the translation (or cognitive interpretation, since that's a word that some autistic people use for it when they get a handy dandy friend to do this translation and support for them, see Kassiane's piece,) in the hopes of getting it into a journal. I really need to transcript the presentations I gave at the conferences, but ugh auditory processing issues are a thing. Making transcripts of my own talks, even with good recordings, is not easy, and I suspect that I actually have meh recordings. Oh well, it needs done so I will get it done. And then I'll post about it when it happens, since I'm pretty sure this is where said transcripts are going. At the least, it's one of the places.

In the last few days, Kerima made an important post about appropriation and erasure in activism, with a good bit of the focus on two good friends of mine, Lydia and Kassiane, because they are Autistic people of color, Lydia genderqueer and Kassiane a woman. This is relevant to "what Alyssa did this summer" because Lydia and Kassiane are friends, but also because Kerima linked to a post of mine for documentation and explanation on one of the issues, which means "got linked in an important post" is a literal partial answer to the question.

Sunday, May 31, 2015

Computers and Writing Session D5, Friday May 29 3:00-4:15pm, Disability and Universal Access.

I attended the Computers and Writing conference at University of Wisconsin-Stout. One of the panels where I took pretty good notes was session D5, Friday May 29 3:00-4:15pm, Disability and Universal Access. I'm now posting my write-up of the panel and my notes. 

Here's the nicer write-up, which I also added to the Digital Rhetoric Collaborative's Wiki. Maybe someone else will edit it with additional information, so that may not remain the same as what's below.

This panel began with Steven Hammer of Saint Joseph's University presenting on “The Sounds of Access: Disability, Art, and Open Source DIT (do-it-together) Interventions.” Hammer's presentation is concerned with Western art history and multimedia writing's tendency to ignore the perspectives and contributions of disabled people, and with the tendency towards a deficit model. He notes that after a diagnosis, there is a prognosis, which rather than simply describing what life will or could be like, it uses a presumed (and now unavailable) norm as a basis and describes how life will be different from that norm due to the diagnosis.

He suggests, rather than asking about how only certain people with certain diagnoses have bodies which are failing or considering how all bodies will eventually fail, asking “how are you failing right now?” He proposes that we consider the medicines we are taking to keep our bodies running every day.

With this question, however, Hammer mentions the risk that people will presume their experiences of bodily failure is equivalent to that of people with disabilities, who face oppression and marginalization based on their abilities in addition to the primarily practical concerns of keeping their bodyminds running.

Hammer then spoke about projects done together which use open source and glitch-theory methods to increase the accessibility of artistic production. One such project was his work on instruments for Arduino.

Hammer also drew a connection between Alexei Kruchenykh's idea of developing a language with no fixed meanings and his communication with his son, where the sounds are not words and the meanings might change from day to day.

After Hammer's talk, Samuel Harvey from Saint Cloud State University spoke on “Autism, Neurodiversity, and Identity Formation Through the Internet.” Harvey's talk covered the history of work on identity formation and on theory of mind, including the relations of these issues to autistic people. Noting that work on identity formation presumes that identity formation rests upon social interaction and the ability to understand what others are thinking (Theory of Mind,) and that autism comes with difficulties in social interaction, he asks what this would mean for identity formation in autistic people.

From there, he continues on to enthymemic dehumanization of people, particularly autistic people, where statements about identity formation, humanity, and theory of mind are made which logically lead to (never explicitly stated) denial of identity or humanity to marginalized people. The two primary examples Harvey notes are: 1) If identity formation depends on an understanding of what others think, or a theory of mind, and autistic people lack a theory of mind, then autistic people would be unable to develop an identity, and 2) If theory of mind is innate to humans, and certain groups are found not to have a theory of mind, that members of those groups are not human.

Harvey also notes issues with the current methods of testing theory of mind, primarily the Sally-Anne test, in that passing these tests depends on linguistic ability and upon cultural factors. He finds that rather than being innate to humans, theory of mind is innate to dominant groups, who use it as a tool of oppression to rob people of identity, agency, and personhood.

The third planned speaker for the panel, Annika Konrad of University of Wisconsin-- Madison, did not appear to speak on “Visually Communicating Visual Impairments.”

Liberty Kohn of Winona State University spoke third, on “Sound Pedagogy: Sound Art as Rhetoric, Poetic, and a Voice in the Composition Classroom.” He explored audio assignments, noting that while it is common to assign students to read multiple kinds of media, if students are not also writing multiple kinds of media they are not participating in a fully multimedia experience. He spoke about meta-language, and having students make versions of audio both including and excluding the meta-language in their assignments, and of the rhetoric of these choices.

In addition, he covered the idea of teaching non-musicians to produce audio in the classroom, as audio assignments are currently primarily the domain of people whose areas of study relate directly to audio. 

Now for the less polished notes I took during the session:

Session D5: Friday May 29, 2015, 3:00-4:15, Disability and Universal Access themed panel.

Steven Hammer, “The Sounds of Access: Disability, Art, and Open Source DIT (do-it-together) Interventions”

Diagnosis, puts a thing on us.
Prognosis. Based on knowing that a person has a given thing. “What's life like based on what it could have been before.”
What does “no significant development” mean?
Asks, “How can we get beyond a deficit model?”
Amundon, 2000 “normal/abnormal is the basis of the deficit model.”
“human variation rather than pathology” Reid & Valle, 2004.
“[the] non-neutrality of techno-social artifacts and contexts... they are embedded... theya re not sterile, they're imperfect...” Cates 2014.

“from temporarily able bodies to always-already malfunctioning bodies” is on the presentation and he said it and I think that's original wording to Hammer. Also I like this wording.

Asking “how are you failing right now?” rather than the thought of this as “someday” your body will fail, think about the medicines you're taking.
Of course, we need to make sure people aren't concluding that they belong in disabled people's spaces because they have a headache or some such because that'd be fucked up.

Draws a parallel between Alexei Kruchenykh's idea of developing a language with no fixed meanings and his communication with his son, where the sounds are not words and the meanings might change from day to day.

The world is built for people who have an identity that is fucking fictional!

Samuel Harvey, “Autism, Neurodiversity, and Identity Formation Through the Internet”

Henderson, Davidson, Hemsworth, and Edwards 504?? Something Sam's citing.

“If identity is formed through communicating with others, and autistic people struggle with communicating with others...” [Ask Sam if I can see his slides after?]

Samuel brings up the possibility of written language as a discourse where autistic people could develop their identities.

Davidson 796. “NT conversations have a very fast-paces rhythym...”

Erikson+Cohen=> identity is formed by having a theory of mind.

First two publications of theory of mind, the titles are Does the X have a “Theory of Mind”?, with Chimpanzee and then Autistic Child. Erm erm erm.

Enthymemic dehumanization, leads to Autistic people not being able to have identities because we lack a theory of mind... yup.
Theory of mind innate in humans, bunch of folks don't, therefore those groups aren't human.

Yeargeau+Heilker state that autistic people have our own rhetoric and language, oh hey, that fucks up our test results in the area of language.

Halle and Tager Flusberg (2003), Lohman and Tomasello (2003) as cited in Miller.
Folks like to claim that language has no impact on the results of the test, which 1) Wrong, and 2) claims the test is arhetorical.

Tons of other factors wind up actually messing with theory of mind results. Whoops. Cultural stuff, socioeconomic stuff, linguistic stuff, and also quite a few kinds of neurodivergence.

Theory of mind is (maybe) innate in dominant groups, used to fuck over the disadvantaged groups.

“Theory of mind is innate in dominant groups, it is a tool of oppression meant to rob people (mostly autistics) of identity, agency, and even personhood.”

Harvey thinks theory of mind is a theory of the minds of dominant group members. That is, the folks who have a theory of mind don't actually have it about members of the groups said to “lack” a theory of mind.

Friday, May 15, 2015

Yes, That Too Acceptance. Love, and Self-care: #AutismPositivity2015

I have been writing less on my blog since... well, ever since I left for China at the end of August 2013. Spending an academic year at a university that really, really did not want me to be there was extremely draining, and I've already written a lot of things on this blog. I'm not really out of things to say, because there are always new ideas and new connections and new events, but I'm low on energy to say them here, so I am posting less often than I used to. (I used to post every day, sometimes multiple times a day, and that hasn't been the case since 2013.) 

That's OK, and deciding that it's OK is part of my accepting my limits and taking care of myself, which is this year's theme.

I've also been using some of what I write for academic purposes. I've done some short fiction, and this past year I was in a capstone engineering course that involved 50+ page reports at the end of each semester. That's a good bit of writing. I've also been working on a chapter for a book, which is currently at 30+ pages, and conference presentations, and I've been reading and taking notes for multiple projects. I've got papers and chapters to write, and will continue to, and if I want to be making a living, I'll need to be using my writing for places that help with that goal. 

In a very literal and physical sense, earning a living is required in the current system (and that's not an endorsement of the system, just an acknowledgement that to survive, I need to exist in it) so prioritizing placement of my writing in places where I get compensation is kind of self-care, in a physical and pragmatic way. 

Not so much choosing to write things that would be palatable to the mainstream. I don't do that so much, because writing things I disagree with to survive is survival but not self-care. Ensuring that I have the resources I need to live through placement is a different thing than getting resources by silencing myself or others, and only one of those am I talking about here.

And you want to know what else is self-care? Using my AAC device when I'm tired and find it easier to type than to speak, not just when speech is completely gone. That's self-care, and it's something I've been doing, with friends and at school. I'm glad I'm doing it. Pushing for normalcy for the sake of normalcy is kind of the opposite of self-care, and I've had enough of it.

Saturday, May 2, 2015

Late for Blogging Against Disableism Day

Disableism/ableism seem to be pretty much the same thing, so far as I can tell, in case anyone is familiar with one or the other. I think it might be a regional thing? Both are about all the kinds of discrimination and stereotyping and barriers that disabled people have to deal with.

I think what I want to talk about today is related to passing (or not passing) and outing myself and what happens after, when people say "I would never have known!" or "You don't need to tell me that!" or "I'm so sorry!"

Because... there is ableism there, and it's the most recent example that's coming to mind. That's a big improvement over last year, when I was struggling with a school that was pretty actively trying to block things I was doing and made attempts at preventing me from coming and then later at having me sent home because I'm autistic. That was really blatant and nasty, and I'm glad to be out, and in comparison what I'm dealing with now- well, let's just say I'm in no hurry to go back to last years situation. Here is good. Now is good. Not perfect, hence still having something to talk about, but pretty good.


Because this is for Blogging Against Disableism Day, or BADD, I figure there might be some folks reading this who haven't read anything else. I'm Autistic, I usually can and do speak at least some, but not always. When speech is either non-existent or not doing everything I need communication for, I write and I use text to speech. I'm also a graduate student in math and a teaching assistant in math, so I work as a math tutor and teach a section of precalculus.

Last Thursday (bit over a week ago) I had two exams in a row, and then two more classes and work. By the end of the exams, speech was not working, which for me is not even a little bit of a surprise. I went to my next class, graph theory, and I mostly didn't need to talk. I wrote a little bit to my classmate who sits next to me, but mostly language wasn't needed. In between that class and the last one of the day, functional analysis/operator theory, I was in the classroom (both classes were in the same room) and one of the engineering students in operator theory came in. He tried to talk to me beyond what I could handle with gestures, so I went to the whiteboard with one of my markers and explained that I couldn't actually talk with my mouth right now and that it was related to my being autistic.

"I'm so sorry."

Why are you sorry? What is there to be sorry about? In that situation, I can't think of a reason for him to be sorry that doesn't involve ableism.

The assumption that disability is something to be sorry about, something to feel sorry for, is ableist. (Someone not being a fan of their own disability, or being angry about the barriers they face, is very different from someone assuming that we must feel a certain way about our own disabilities.)

When I tell someone I'm Autistic, I don't want the first thing I hear in response to be that they are sorry. I really, really don't want to know how they think I should feel about my autism. I'm not sorry. Why should they be?

Monday, April 27, 2015

When I Am Using Text To Speech

I've written a bit about my use of text to speech software as a form of augmentative and alternative communication. On my laptop, I have eSpeak which does English pretty well and Chinese poorly (but extant!) On my iPad, I have Proloquo4Text. I really like having the ability to type and pull saved phrases, because there are phrases I use frequently and there are phrases that I might not remember I have the option of using unless I see them. (Setting boundaries of No, I can't/won't do the thing or asking for help are the parts where I might not remember I can do that.)

There's some articles around on how to do communication with AAC users, which is cool and a nice starting point, but folks are going to have different preferences related to how they use their AAC and how others interact with them. Thus, I'm tossing my personal set out there, in no particular order.

  1. When I am typing, this is not always equivalent to "gathering thoughts," but it's usually close. If you were talking before I started, go ahead and finish. This isn't me starting to talk yet. Just don't do "I see that Alyssa has started typing so I will now start talking" and we're probably fine.
  2. As a corollary, since we're not treating my starting to type as the same thing as me talking, we're all the way not treating it like that. If I start typing before you finish talking, This is not me interrupting you. It's not me interrupting you until I hit "speak" on whatever I wrote while you're still talking.
  3. There might be times when I interrupt. Just like I might when I'm speaking with my mouth. It happens! Especially if there's an emergency, but also because in natural conversation people do sometimes interrupt each other.
  4. Once I hit speak, if you start talking before the software finishes, you are interrupting me. Are there times in normal conversation where that could happen and be OK? Sure, and I'll judge it the same whether I'm using my mouth or typing. But let's not pretend that it's not happening. (The existence of a replay button on Proloquo4Text means I may less annoyed by an interruption than if I were speaking, unless I have reason to believe you're only interrupting because I'm using AAC, in which case I probably think you're being terrible.)
  5. If you wouldn't finish my sentences when I'm speaking, don't try when I'm typing.
  6. Unless I am turning my device around to show you what's on the screen and you're moving it to see it better (I don't always know what angle is best for showing someone) don't touch my device. It's doing the job of my mouth/vocal cords/etc.
  7. Talk to me, not around me.
Long story short, there's some practical questions like "When can someone else touch the device?" and "What does "starts typing" count like?" but we should be looking at a fairly typical conversation. 

Sunday, April 26, 2015

Doing What Works- Academia Edition

Making notecards for research papers seems like a pretty accepted thing. When they taught us how to do research papers in high school, they made us do them (and handwritten, too!) When my friend, a history major, was writing papers for college, he made them. His were handwritten. Quite a few of my friends make them too.

As soon as I wasn't required to anymore, I stopped making physical note cards. It's not because I don't think they're a good idea. I think having note cards is great. The problem is making them. My handwriting is messy enough that handwritten note cards don't actually do me much good, and writing starts to hurt fairly quickly so I'm not inclined to make cards, especially when they won't help much due to the messy handwriting issue.

Instead, I've been typing my notes. This is useful because it's hard to lose a digital copy of my notes. It's also useful because I can read things I typed later. It's easier than handwriting, because typing doesn't make my hands start to hurt. It lets me post my notes publicly, which I do in the hopes that they are useful to someone else. (I've got friends who do academic stuff, and if my notes about a source help them decide if reading it is worth it or not, or if having my notes lets them spend less time going through the source once they have it, this is great! I like it when academics post things publicly and it makes other people's lives easier.)

Because technology exists and can do cool stuff, and because I know printed note card size flash cards exist, I recently looked around for ways to print directly onto index cards. Lo and behold, it can be done! Apparently, as long as you make your paper size right in your document and in the print step, most printers can print to index cards, either 3"x5" or 4"x6".

Now I can get the benefits of both digital notes and legible notecards! It's a bit of a process, but way faster than trying to read my handwriting.

  1. Take notes on my laptop, typed, regular letter paper sized document.
  2. Save as "Notes" for the source.
  3. Save again, as "Note cards" for the source.
  4. Change the page size to 4"x6" (big index cards) and the margins to 0.5"
  5. Copy the citation for the source to my clipboard.
  6. After each note that I want a note card for, paste the citation and then insert a page break. On my copy of Open Office, ctrl+enter does a page break. (I don't need a physical card for "Also read this source the author cited")
  7. Load up the index cards in the printer and print!
  8. Sort the cards by project they relate to. If a card relates to multiple projects, I can print multiple copies of that page so that a card for it goes in every project it relates to.
I do have a decent bit of overlap between projects, too. My projects (in varying levels of activity) are below, and purple lines connect projects that currently have at least one shared note card.
Image description: Project titles in boxes connected by lines representing shared note cards between the projects. The listen projects, left to right and then top to bottom, are 

  1. "Neurodivergent Philosophy of Science," 
  2. "Rethinking Engineering Design and Disability," 
  3. "Cognitive Interpreting Application," 
  4. "Theory of Mind Inside Out,"
  5.  "Disability Studies for Engineers Course Creation," 
  6. "Cognitively Accessible Language (Write so the folks you write about can understand)", 
  7. "Erasure of Queer Autistic People," 
  8. "Queer Because Neurodivergent is STILL QUEER."
Using the numbers as shorthand for the projects, the following pairs are connected:
1 and 2, 1 and 4, 1 and 5, 2 and 3, 2 and 5, 3 and 6, 4 and 6, 4 and 7, 4 and 8, 5 and 6, 7 and 8.

Tuesday, April 21, 2015

"The Myth of Clinical Judgment" notes

The next episode of Alyssa reads a thing and shares notes is for "The myth of clinical judgment" in the Journal of Social Issues. Citation:
Biklen, Douglas. "The myth of clinical judgment." Journal of Social Issues 44.1 (1988): 127-140.

Biklen notes that people with have historically faced exclusion from education, social rejection, limited physical access to society, and segregation within institutions, and that typically people facing such treatment would be considered a marginalized minority.
“Yet the more common tendency has been to view people with disabilities as (a) victimized by a disabling condition and (b) in need of treatment-- not of rights.” (128)

Officially, the appropriateness of educational and residential treatment, placement, and supports for people with disabilities is considered a matter for professional (clinical) judgement.

“The more severe the disability, the greater the likelihood that the person will be regarded more as a “patient” than as an object of discrimination. Indeed, identification as a patient would seem to preclude identification or status as an oppressed minority.” (128)
Note (from me, not Biklen) also that this still presumes a way of judging a spectrum of severity, from less severe to more severe. However, any such judgment will be socially constructed and is based against what society expects people to be able to do and how society expects people to look, move, and act.

Professions such as special education, psychology, and rehabilitation for people with disability work through individual assessment, diagnosis, and placement. However, the available options for professionals to place people with disabilities in need to be considered.

Biklen notes that the US government policy has been to avoid placement of people with disabilities in separate classes or schools without demonstration of benefits from the segregation and evidence that integration is not possible, not by administrative concerns such as equipment, specialists, or specialized programs.

“Educators expectations for student performance appear greater for students involved in useful and age-appropriate (and more integrated) rather than nonfunctional (and potentially more segregated) activities.” (132)
Oh hi, presumption of competence showing up more when we're not segregated.

In AY 1982-3, 68% of all children with disabilities were primarily educated in regular classrooms, 25% in separate classes within the regular education building, and 7% in separate schools or other environments (home/hospital) (U.S. Department of Education, 1985, p. 36.)
However, classifying by type of disability, we find that learning disabilities and speech disabilities are typically included while all other groups are more likely to be segregated.

State by state variation in segregation for students labeled with intellectual or emotional disabilities, as well as with multiple disabilities has been extremely wide. Because of the reality that state of residence has an extremely large effect on placement in a mainstream or segregated school, Biklen questions the assumption that placement is done by clinical judgment, despite the claim of clinical judgment. State funding for private school or institutional placement is a strong indicator of actual placement, as do admissions tests or lack thereof.

It seems that people with more severe disabilities get even greater benefit from integration and access to the community than people whose disabilities are considered more “mild.” At least, in terms of how professionals define improvement and benefit, but I'll take it because it favors “stop segregating people and claiming it's for their own good, dagnabbit.”

When examining patterns of residential placements and institution closure, factors such as Medicaid fund use, court oversight, bureaucratic concerns, jurisdictional disputes, public opinion towards people with disabilities, federal funding, availability of alternative placements, pressure to convert institutions for people with disabilities into prisons, and pressure from advocacy groups were found to have a greater effect than professional judgments.

Despite the professional authority supposedly in charge of many life aspects for people with disabilities, including who lives in group homes, who lives in instutions, and who is supported living in the community, the influence of other forces tends to have more importance than said medical/professional judgments. However, the primary factors still aren't the choices of the people with disabilities themselves.

“The solution to the problem of clinical judgement being overwhelmed by nonclinical forces is not more, better, and therefore more influential clinical judgement. Rather, the problem is in the current model of disability services, which treats questions that are both political and professional-- such as where and how people shall live or be educated-- as if they were purely professional ones.” (137)

“The conditions faced by people with disabilities are those that plague other minorities: social isolation, insufficient and unequal treatment, economic dependency, high unemployment, poor housing, and an unusually high rate of instutionalization. It serves the interests of neither professionals nor their clients-- indeed, it perpetuates a myth-- to ignore people's need for political and economic changes while offering them only clinical treatment. This seems particularly wrong and harmful when the treatment itself becomes an extension of political and economic disenfranchisement. Put another way, people with disabilities are more likely to achieve increased self-determination, real choice, and power if they cease being defined as clients whose future rests in the hands of professionals, and are instead recognized as a minority group.” (137.)

Monday, April 13, 2015

Having Bad Days

For some reason, I have trouble with the concept that I am allowed to have bad days, that I am allowed to mess up, that I'm allowed, essentially, to be human. It's a problem. Neurodivergent K talks about it too, and yes, I did, in fact, manage to internalize this really toxic message while still being passed off as "just" gifted.

With my getting sick this weekend, I'm seeing (at least for the moment) just how illogical and potentially bad this is. Warning for potentially TMI discussions of sickness beyond this point.