What's Apraxia? Oh. #AAC

Today I went to the Assistive Technology Conference of New England. My advisors brought me there. It was pretty cool. I had some conversations that I was glad to have. One of the sessions I attended was Kate Ahern's session on literacy and Augmentative and Alternative Communication (AAC). Pretty early on, she defined apraxia and noted that many AAC users and generally folks who can't necessarily talk have it. So here's how she described it:

Apraxia is "an inability to perform learned movements on command even if understood, there is a willingness to perform and the skill has been previously learned."  It's "worsened by anxiety, illness, stress, and demands."

So here's the thing. I know how to speak. In fact, I know how to speak two languages, English and Mandarin Chinese. My speaking ability varies from "no mouth sounds are happening" to "clearly fluent in the current language." A whole lot of in-between possibilities also happen, including fluent speech while needing someone else to initiate the conversation/prompt the speech, fluent-sounding scripting but no off-script speech, and slow speech that gets pushed out one word at a time.

And I have woken up non-speaking (that I know of) once since learning to speak: I was sick that day. Stress increases the likelihood that speech will go out, and that's both "doing too much" stress and "here are sensory processing issues in my faaaace" stress. Flashing lights will make speech go kaput pretty quickly, because repeated blows to the eyes are not fun for anyone and that's what flashing lights feel like to me.

Now, apraxia is describing a functional thing, not an internal why is this happening thing, so as great as it is to have the word (hey, formal sounding words are useful when dealing with formal sounding people) this doesn't really tell me new things on its own. It is, however, a useful word to look for research and narratives on because those might have information about the why's and how's. They also might have information about the "what to do now that you know this is a thing" side, which would be handy. I have a pretty good handle on what to do when speech isn't working (write, type, gesture, grab a whiteboard marker so that I can write, etc) but more possibilities means more versatility and more back-ups when the first idea doesn't work out.

It's also something where I can (and do) think about the rhetoric. How do we talk about apraxia? Kate calls it something neurological, and explicitly says that it's not laziness and not "a behavior" (I think it is partially detected from behavior in the literal sense that we're not actually doing the thing, but it is definitely not "a behavior" in the sense that behavioral therapists like to talk about. Not that I think the concept of "a behavior" in that sense is entirely coherent anyways.) But when describing the sorts of activities she suggests, she also says that we should make it worth fighting the apraxia.

So what does it mean when we talk about apraxia as a thing that we fight? We just said it's not a behavior, not laziness, that it's a neurological thing, what does it mean when we call this a thing you fight and could beat or lose to? And it's not just apraxia where people have thought about this. Cancer gets this treatment. Autism gets this treatment. Actually quite a few autism metaphors get discussed in Loud Hands: Autistic People Speaking (It's an anthology, Julia is the editor and not the author, IDK why Julia's listed as the author on Amazon.) Or even generally as an external force, whether or not it's one we're fighting? The mind isn't separate from the body, and the neurological quirks aren't separate from the mind. This isn't something I've thought about nearly so deeply as with my (part 2 still coming I swear) dive into aphantasia rhetoric, but it is something where I'll ask the question.

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#Rhetoric and #Aphantasia (1/2, not academia)

So I'm Autistic. I've seen all sorts of contradictory ways of thinking about autism. Somehow we both lack imagination and are lost in our own worlds? You kind of need to pick one, considering that making our own world involves imagination.

Well, about a year ago they gave a name to one of my other cognitive quirks. "Aphantasia" is now either an "intriguing variation in experience" (specifically stated not to be a disease!) which about 1 in 50 live with, or it's a "newly described condition" we'd like to investigate for insights into the imagination and ways to boost visual imagery (presumably in the folks who have such visual imagery) in order to "improve our memory, increase our empathy and even gain new treatments for conditions like addiction and anxiety."

The basic idea of aphantasia is that I don't have a mind's eye. (I do have a mind's ear, and absolutely get songs stuck in my head.) If you ask me to picture an object, I'll either sit quietly and then relay factual information about the type of object, or I'll bluntly tell you that I can't do that. Most creative exercises, there's a way around actually visualizing the thing. I can tell you this because I don't see images that are not literally in front of me, not when I'm awake. My mind just doesn't work that way. (So no, I don't think in pictures. I suspect that "no minds eye" and "thinking in pictures" is a combination you can't actually have in one person.)

And yes, I am interested in better understanding how my own mind works. I don't think that's unusual. Pop psychology exists, after all. And Tris, from Divergent, made her cooperation with Erudite's tests contingent on her getting to understand the results of the tests they were performing on her. She wanted to understand how her mind worked, and especially the ways her mind didn't follow the operating procedures she'd been implicitly taught were standard. But that's not why I'm following the discussion on aphantasia, really.

I'm watching the rhetoric.

Shortly after the publication of "Lives without Imagery -- Congenital Aphasia," a letter to the editor in Cortex authored by Adam Zeman, Michaela Dewar, and Segio Della Sala, we see a human interest story on aphantasia in the "future" section of BBC.com. We talk about one adult man who does not visualize, and we talk about the difficulty inherent in understanding the internal mental processes of another person. We see discussion of potential advantages of reduced or missing mental imagery -- not needing to re-watch disgusting or traumatic events, for one thing. It's mentioned that verbal and logical skills tend to get practiced more (hi, did you know that I'm a mathematician?)

This is also the article with the mention of treatments for other conditions -- anxiety and PTSD among them. Which ... well, I've got anxiety and already don't have any mental imagery. If reducing mental imagery helps some folks with anxiety, that's great but let's not pretend that will be a silver bullet, ethics around activating and suppressing cognitive abilities aside. (I think that it's fine to do so by the request/desire of the person whose head you're messing with, but there's a lot of space for coercion towards "typical" cognitive processes.) There's some talk about manipulating people's levels of mental imagery for various reasons, but it's in both directions. Despite calling aphantasia a newly described condition (as opposed to cognitive style/variant), this article is probably the furthest away from disability tropes of the BBC articles. (Which isn't that far.)

B percent live with, affects as many as X in Y. These are condition words, pathology words, but they show up in the article that calls aphantasia a variation and specifically states that it is not a disease. And the article's headline? "Aphantasia: I can't visualize my own children." It's in the "health" section. A professional describes the effect on memory more generally, and then three people give short descriptions. One talks about how he does things. Another talks about what he can't do. We close with another professional, speaking to medical history and to educational impacts. (As an aside, I hate mindmaps.) This article reads more like a personal interest story describing the experience of a disability than anything else. It wants to be a disability story, but this Adam Zeman guy who was first author on the congenital aphantasia study won't call it a disease.

Another piece in the health section discusses both aphantasia (not visualizing) and hyperphantasia (visualizing extra.) Zeman continues to insist that aphantasia is not a disorder, thank you very much. I'm sure he's seen enough of the discussion to realize that the way we talk about it is going that way. The discussion for aphantasia here is largely focused on what we can't do, though. His insistence reads as a bit incongruous with the way the rest of the article talks about aphantasia.

(If you want to call it a disability, or conditionally a disability, I'd give you that. The social model of disability, which recognizes interactions between people and their environments, is a thing. The insistence on visual methods of learning and things like mind maps is also a thing, and presumably just as inaccessible to other aphantasiacs as it is to me. Now we're bringing in ideas of neurodiversity, where a neurological type can be a disability without it being disordered. There's not just one right way for a mind to work)

Then there's the aphantasia forums. These started shortly after the first BBC articles, if I remember my timing correctly. I've got an account, and will probably be sharing my thoughts there too, but I honestly don't post much. There's places where people share articles about aphantasia, including ones they wrote themselves. There's crowd research. (I notice that one of the questions is about people having other cognitive disorders as well, which positions aphantasia implicitly as being a disorder.) I've seen general discussion where quite a few people talk about having trouble with mathematics, which is opposite what some of the published articles hypothesize (compensatory skills in logic, verbal stuff, and/or math.) That could be going in the direction of mutually contradictory stereotypes.

Blake focuses on the experience of realizing that the way his mind works is most definitively not how most people's minds work. It's almost an attempt to analyze the psychology of the visualizing majority from the outsider perspective of an aphantasiac. Which, I mean, if they're going to do that to how we think, yeah, let's do this. Let's add a wing to the Institute for the Study of the Neurologically Typical. We've got an Autistic wing and a Dyslexic wing, why not an Aphantasiac wing?



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Alyssa Reads Artists against Police Brutality

I was actually supposed to read this a while ago. (Sorry folks.) But here's the book: Artists against Police Brutality, an anthology from Rosarium. I got access to a PDF in order to write this review.

It's honest in a way I appreciate: the introduction tells you, straight out, that the project was born from (completely justified) anger. The mix of genres is good, because different people interact best with different formats, different kinds of stories. Me, I like words. And there are pieces here which are told as paragraphs of black text on a white background. Graphic narratives, combining pictures with words, are also great. There are plenty of those. Comics. It calls itself a comic book anthology. This is true. It is. (That doesn't mean it's what most people think of when they hear "comic book anthology. But that may have more to do with the idea of comics as somehow less mature than it does with the reality of stories told in graphic format.)

The family portrait was an emotional piece to look at. They're ... not a living family. They're a family tied together by the fact that they were all killed by police: John Crawford, Tamir Rice, Eric Carner, Michael Brown, Carry Ball Jr., Amandou Diallo, Tanisha Anderson, Mirriam Carey, Yvette Smith, Rekia Boyd, and Aiyana Stanley-Jones. (Read their names again. How often does the narrative ignore the people who are being killed?)

And then I go on: Family stories about uncles and fathers who were killed, personal stories of getting "lucky" by way of not being dead, fiction, memoir, satire. There are essays, connecting history to events to patterns and back around to events. Show the patterns: this was never an isolated incident.

One of my favorite lines comes from Barbara Brandon-Croft: "The media shoots film ... the police have bullets." Think about it next time someone tries to blame media for people not trusting the police. Who has the bullets here?

One story calls out the problematic white liberal. (Hi. I'm white.) "Colorblind" racism is a problem. Talking about a problem that already exists does not somehow bring that problem into existence. It was already there. We need to look at ourselves, and to listen to what the people we claim to help are actually saying. (And before anyone can quote MLK out of context, remember what he said about the white moderate.)

The story of Reginald Lawson is mentioned, too. He is a black autistic man, a teen at the time. He was, eventually, transferred to a "treatment" facility, which... I don't know if that's an improvement over jail. I know that's still being locked up. The person writing about his case is the mother of a black teen. She says her son also has Aspergers, also loves hoodies, could also be seen as a threat for the ways he is different. She says she has read the work of famous autistic people and gives a list. But those authors are all white, and race matters. Their experience is not the experience of her son. (Which is very true. There's a reason that All the Weight of Our Dreams is a thing.) (Also, while I very much can't speak to intersections of race and autism, I feel pretty confident saying that you should disregard her advice re: contacting Autism Speaks. They don't so much help as make statements about stuff other people got done in which they make it look like they helped.)

Continuing on, we meet a superhero who catches bullets before they hit people who, as people have the chance to find out, were all innocent. None of them even did what the officer tried to shoot them for. Another story speaks to domestic violence from a father who is a cop. There's a science fiction narrative set in outer space which (very intentionally) parallels race relations and the history of slavery in the U.S.

Artists against Police Brutality is not an easy read. It is an important read.

Day 2 (not) in the inaccessible classroom

Yesterday, lab was bad. Like, I wasn't able to stay kind of bad. And I wasn't too happy about that. Today, I didn't go to the main lab meeting. It was going to be in the same place, with the same noise issue, and I was having none of that. I was also invited to a lab meeting/seminar about an hour from campus during the usual lab time, but I'd have said “sorry, can't go” if there hadn't been a reason I was already preferring to avoid the electrical engineering lab today. I take my teaching obligations seriously, and err on the side of staying to teach even in situations where getting a substitute would really be OK.

But there was a reason for me to skip teaching today, called an inaccessible classroom environment. So I checked with the primary professor, and I got the go-ahead to skip the main lab session in its (unusual) room and go to the seminar. Instead, I was to negotiate a time to meet with a student who needed to use the oscilliscope in our usual lab classroom. The usual classroom doesn't have construction or explosion testing nearby, so this is great. I quite like being helpful as a teacher in ways that I can be, you know, actually helpful.

(I can absolutely be helpful as a teacher while speech isn't working. When I teach for the Art of Problem Solving, everything is always already typed, and that means speech is irrelevant. I've tutored real analysis without speech before. I've even run labwithout speech before. I wrote on index cards, which I left with the students whose questions I was answering. It worked out fine. Speech was not the problem. Continuing sensory assault which prevented me from focusing on a problem long enough to answer it and which was bringing me to the point of meltdown was the problem. Or: An inaccessible classroom was the problem.)

And my meeting with this student wasn't an issue of “well here's some make-work.” She actually needed to use the oscilloscope, and therefore the professor actually needed to find a TA who could meet this student in the lab. Not only that, but there were 6 other students who needed supplies from the lab (extra chips because they need 5 two-input and gates and their chip only came with 4, more wires because the lab needed a ton of wires, that sort of thing.) There were even three other students who came in needing troubleshooting help. So I got a small group of students working in the lab at an hour that worked for me, where it was quiet, providing actually needed supervision. This was good, becauseI don't take well to make-work, not when I can't really work 40 hours in a week and collapse in about a week when I try. I need prioritization to make sure that the work I'm doing is truly needed, not busy work.

In case your wondering where all the reflections on my teaching are coming from: I'm preparing a proposal on teaching while disabled. If the proposal is accepted, I'll have to keep a teaching journal in the spring semester. Since blogging is like journaling but more accessible to me (Julia says this too!), blogging gets me in the habit that I'll likely need to form. Plus I form insights by letting myself write, and that means blogging helps me organize my thoughts in ways that may well help with the proposal writing.

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Silence of Absence

This Autistics Speaking Day, I had to leave the electrical engineering lab I'm a TA for early. It wasn't the professors fault, or the fault of my students, not at all. I did lose speech before I exited, which was literal silence, but that's not an issue. I've helped run lab without speech before. I'm pretty good at making myself understood without speech -- I type quickly, I can write by hand with pen on paper, and as long as you don't incorrectly presume that autistic means no body language, I'm not actually all that hard to read.

This was not the same as the time I successfully ran lab without speech. That day, speech wasn't working because of an event that took place prior to lab. The event was a one-off, not something that continued. This time, the cause of speech-kaput was in the lab. Or below it, to be precise. There's construction going on in the engineering area, including inside some of the buildings. One of the places that currently has loud construction is ... right below the computer lab, where we were meeting. There's apparently also explosion testing near the lab? Bad placement. That meant that the cause of speech-kaput was in the lab. It was also ongoing. If the cause were a one-off event in the lab, I could keep working. I'd be interrupted once, then go back to work and stay working. However:

• Each round of noise (honestly pretty short) was painfully loud, interrupting me and making me jump.
• The amount of time between rounds was unpredictable. Sometimes we'd get several in a row, quickly. Sometimes there'd be enough time to start working again, be concentrating on something, and then get interrupted again. Never enough time to fully recover, but sometimes enough to try working again.

That's a bad combination, and I lasted about half an hour ... of a lab session that's typically three hours. 

After I taught lab without speech, I felt good. Not great, because I was still reeling from the effects of the event that made me lose speech in the first place, but good. I'd done what needed doing, and I'd shown myself that I could teach without speech. 

After I had to leave lab today, I didn't feel good. All too often, autistic people are silenced in conversations about autism by never even getting to be a part of the conversation. It's hard to have a voice (mouth-sounds or otherwise) when absent. And I was absent, because presence was inaccessible. I was silent in an entirely different way than when I was present, literally silent, and still teaching. 

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