Disability Microfiction

For Cassandra Khaw's birthday, she asked that people do microfiction requests. So, I said I'd do disability microfiction (basically a story, premise, or piece of a story that fits in a single tweet) for people who replied with a word.

Reply with a word for a disability microfic https://t.co/ConggtPn39

— Alyssa (@yes_thattoo) August 31, 2019

This is me saving the fiction I wrote, and putting it in one place for blog followers who don't necessarily use Twitter.

Prompt: Cape

Her cape could double as a magic carpet. It came in handy when people forgot they were supposed to have ramps...

— Alyssa (@yes_thattoo) August 31, 2019

Prompt: Echo

“Echo echo echo!” I called out to the canyon. My voice didn’t come back, but I was having fun repeating the word anyways.

— Alyssa (@yes_thattoo) August 31, 2019

Prompt: Exuberant

When she heard the news, Anna couldn’t stop happy-flapping. Not that she wanted to. Being elected President definitely warranted happy-flapping.

— Alyssa (@yes_thattoo) August 31, 2019

Prompt: Horses

We made prostheses for the horses who lost legs in accidents.

— Alyssa (@yes_thattoo) August 31, 2019

Prompt: Triskaidekaphobia

I looked at the AAC specialist.
"... did you really need to unmask *exactly 13* words on that page? Can't we add, like, one more out of ALL THE WORDS?"#AAC #slpeeps #slp

— Alyssa (@yes_thattoo) August 31, 2019

Prompt: Ecstatic

They shook their wife awake. "Text the midwife, it's time!" they signed.

Their wife placed a hand on their belly, ecstatic, and reached for her cell phone.

— Alyssa (@yes_thattoo) August 31, 2019

Prompt: Kiss

At the end of the date, she rolled her wheelchair around the table, next to his. "May I kiss you?" she asked.

"Yes," he said.

And they did.

— Alyssa (@yes_thattoo) August 31, 2019

Prompt: Dorsiflexion

The patron goddess of travel taught you to ride side-saddle, to avoid dorsiflexion.

— Alyssa (@yes_thattoo) August 31, 2019

Prompt: Strong Independent Person

The princess couldn’t speak, so she studied magic and designed a slate that spoke what she wrote on it.

— Alyssa (@yes_thattoo) August 31, 2019

Prompt: Crackle

His joints crackled as he put his knee back together. "What, haven't you ever seen a cyborg?" he joked. (He wasn't actually a cyborg, yet. Just hypermobile.)

— Alyssa (@yes_thattoo) August 31, 2019

"But that won't fly in [high school/college/the working world/etc...]!"

When people have somewhat unusual methods of ... doing anything, really, there are often authority figures who will try to stop it with the excuse that it won't fly in some other context, so it needs to be stopped in this one, too.

It's bullshit.

First, different contexts are different. A K-12 classroom is not a university classroom is not a construction site is not a factory floor is not an online chatroom is not a floor full of cubicles is not a ballroom. Just because I shouldn't waltz on a construction site, that doesn't mean you should tell me not to waltz in a ballroom because it wouldn't fly on a construction site. Just because some people will (incorrectly) assume my iso headphones (noise reduction, but not cancelling or music) mean I'm not paying attention, that doesn't mean I shouldn't wear them on a factory floor or at a construction site. It doesn't actually mean I should skip them at school or in an office, either. It's an assistive tool for sensory processing issues, and willful continued misinterpretations once I explain that to you once are not my problem.

Second, the context you cite may well consider the unusual method a non-issue. Some people like to tell me that being nonbinary might sound cool on the internet, but at work no one would tolerate that. They're just wrong. I use "they/them" pronouns and either "Mx." or no honorific at all as a teacher. I do the same as a graduate student. I get asked about it on occasion, but it's a non-issue. Your statement that it won't fly in [insert other context here] may well just be wrong. Others would like to tell me that sitting on the floor or under tables won't be tolerated later, so kids with disabilities need to be table-ready as a first priority, ahead of things like getting communication supports. I sit under an actual literal table when I have to go into the lab in graduate school. No one cares.

Third, even if the people in this other context have an issue, have you considered the possibility that they're wrong to do so? The administrators at a university where I studied abroad were of the opinion that I shouldn't come, because "people like that shouldn't be in college." (People like that meant autistic people, in this case.) I feel OK assuming just about any specific autistic trait they took issue with was a cover for them not wanting autistic students at all. Or a rock climbing instructor takes an issue with flapping (without letting go of the person on the wall!) and being left-handed. They're just wrong. Why are you backing up their wrong-ness?

Different environments have different expectations for actual reasons, they might not have the expectations you'd think they have, and other people are just as capable of having bullshit expectations as we are. "That wouldn't fly at work, so I'm not letting it fly in my classroom" is not a good argument. 

"They aren't having communication breakdowns"

I've heard plenty of arguments about why AAC isn't needed. Thankfully, I hear most of them in the context of people explaining what they do when they encounter them, rather than the context of people trying to tell me not to type to communicate. Today, Dana Neider, the blogger behind Uncommon Sense, gave the keynote for AAC in the Cloud today. She mentioned one that I hadn't heard before and I wasn't really expecting to encounter.

“They aren't having communication breakdowns.”

Now, I've studied a foreign language. I suspect many, if not most, of you have as well. I took Mandarin Chinese for 11 years (ages 11-21), and spent a total of a year, including the entire last academic year of study, in China. By the definitions set by the American Council for the Teaching of Foreign Language, I reached Superior proficiency for reading, writing, and listening, and Advanced High for speaking. This was hard work! Guess what's in the explanation of the Advanced High proficiency level? That's right. Occasional breakdowns that are based in language proficiency. (They don't talk as much about breakdowns that happen for other reasons.)

The next level up, Superior, is supposed to be equivalent to a college educated native speaker in terms of what you can say. (We're not expected to actually sound like one. Accents exist and every culture has its own common expressions.) So. One step down from a college educated native speaker, we're still talking about occasional language proficiency related communication breakdowns. And you want me to believe a K-12 student never has any? Sorry, but no. I don't buy that. I've met kids ever in my life. Heck, I've been a kid ever in my life.

Or. I'm a teacher. Trying to explain new concepts to people is literally my job. Do I use more than just speech to do this? Absolutely. (I presented at this same conference, about AAC in the classroom, for teachers who need AAC.) Do I experience communication breakdowns in the classroom on occasion? Again, absolutely. Of course I do. Students aren't sure what question I'm asking them. I'm not certain what question they're asking me. Communication issues always, always, have at least two sides. It's neither just me nor just them. If a tool can help either side, or both sides, repair the breakdown, still take it.

Besides, can you honestly say no one's ever misunderstood what you were trying to tell them? In the last few days, weeks, months, have you never been misunderstood, or misunderstood someone else? No one even got your coffee order wrong? Really? Because I got asked if I wanted a hamburger, and then got handed a cheeseburger when I said yes. I eat hamburgers, but not cheeseburgers (texture issues.) That's a communication breakdown right there. AAC wasn't required in order to fix it, but it happened.

So. We've established pretty well that I am 100% certain the person making this argument is wrong, not just in their conclusion, but in their premise. I don't think they're lying, but they're incorrect. Their student or client is absolutely experiencing communication breakdowns. Why don't they know?

1. Their client or student doesn't have the needed communication access in order to say they're having communication breakdowns. I know, from experience, that if I need to use speech in real time, I'm not going to be able to correct most misunderstandings. It's just not going to happen. So you might not even know there was a misunderstanding. Give me AAC and I have a shot. Which, of course, now means you know there was a problem. That's actually progress!
2. They've learned from experience that trying to repair communication breakdowns isn't worth it. Have you ever decided not to address a misunderstanding because you thought it wasn't worth it, or that it wouldn't work anyways? I know I have. And yes, I've done it in an educational context, with points for a class on the line. This past fall, even. In an environment where I had access to AAC and could totally have typed for the conversation. I didn't think it was worth the time or energy it would take, so I let it slide. Imagine that attempts to repair communication breakdowns mostly haven't worked in the past. How often are you going to try, even if the option is available?

Neither of these are reasons to skip the AAC. The first is actually a reason to provide it. The second … AAC won't fix this problem. However, if communication needs not being met was part of why past attempts at correcting misunderstandings didn't work, proper access to communication (likely including AAC) can have an effect on the decision-making process here. That doesn't mean they'll always decide to tell you about misunderstandings. Do you try to correct every misunderstanding you ever encounter? Or do you let some things slide, especially if you don't know someone well or don't trust them to change their mind even given the proper information? Besides, plenty of disabled people have reason to mistrust therapists. We might not want you to have the "correct" information! So providing AAC may or may not lead to you knowing about communication breakdowns when they happen, but if you think there aren't any, that just means you're missing them.


TL;DR: Everyone has communication breakdowns sometimes. If you think your client or student doesn't, that means you're not finding out about them. Maybe they literally can't tell you for communication access reasons, or maybe they've decided it's not worth trying to repair the breakdown. Make AAC available anyways.

Language choices and history

Yeah, yeah, I know, I've talked about this before. Assuming I caught all my prior posts, this is the sixteenth time I've talked about language choices for autism, though this one isn't quite the same as the others. It’s coming as the result of a good discussion that helped me clarify thoughts I'd been having rather than the result of someone insisting my language choice is wrong because they were taught so.

So: I hate being called “differently abled.” It feels euphemistic to me, like we can’t admit to the fact that I’m disabled. I also hate being called a “person with autism.” Even being called “on the spectrum” rankles, and not just because I think the idea of autism as a spectrum gets used to reduce everything into a spectrum of “less autistic” to “more autistic” and also “higher functioning” to “lower functioning,” with these two incoherent concepts also being considered to be the same[i]. It’s also the way the term has been used. It’s a sort of (very recent) usage history that makes me extra wary of “on the spectrum.”

And history is the key to my current thoughts. Every way I can think of to identify myself as Autistic or as Queer has history. Usually as a slur, in the case of Queer identity - Queer itself is an example of this. “Autistic” as noun? It’s part of the dehumanizing nonsense that got person-first language started in the first place.

Person-first language, or “person with autism”? Yeah, it started in a good place, where people with disabilities, mostly intellectual or developmental disabilities, decided that they wanted that language to emphasize their personhood. Professionals were (frankly often still are) forgetting that we’re people. Said professionals picked up the language. They didn’t pick up the intent: remember that we’re people. At least in the case of autism, and probably for other disabilities, they picked up a completely different idea: that the autism or other disability is somehow separable from the person, and there’s a “normal” person underneath. That’s a history I want nothing to do with – don’t call me a person with autism. Also, if you need a language construction to remember that I’m human I don’t want you anywhere near me. I don’t. I’m not sorry.

“Differently abled”? Technically true, I guess. It’s another one where there may have been good intentions originally – recognizing that we have abilities that typical people may not have access to, and that this can be a direct result of our disabilities. (Or, or different abilities?) It gets used as as a way to ignore the realities of disability, of access barriers, and sometimes of the reality that there are things we just can’t do.

“On the spectrum”? It’s been touted as a compromise solution to this language debate. Mostly by professionals who think “person on the spectrum” is less euphemistic than “person with autism” and by people “on the spectrum” who are willing to be tokenized, as far as I can tell. It’s not only unclear (there are many spectrums), but also still a person-first construction. That’s not a compromise! But folks insist it is one.

“Aspergers” or any variation thereof? 1) False. Literally does not apply. 2) When it was a diagnosis in the DSM, it was frequently applied to mean “high functioning” or to avoid scaring people with the “autism” label. It ties in with aspie supremacy, and that can kill. No way. That’s not just a history I don’t like. That’s a present I find morally reprehensible.

Now, I need to find a way to talk about who I am, what my experiences are as an Autistic person. I need to use language that will be understood. Making up new words is a valid option. It’s where new language comes from. I use plenty of words that were created in my community. But take a look at the history behind some of the words I said I have issues with. Some of them started in my community, or communities like mine. Then they got picked up by folks who want to pretend that the difference isn't quite real, isn't important, or can somehow be separated from the person (maybe needs to be in order for the person to count as a Real Person.) Even language that could be good has this happen. Then there’s the reclaimed slurs. (A lot of the language around Queerness is of the reclaimed slur type.) Just about all the language has problems of this sort. At this point, reasonable people can reach different preferences based on which bad history, which bad associations, which ones are we going to tolerate or reclaim for the sake of being understood?

Now, I am of the "queer as in fuck you" school of thought for most of my divergences[ii]. Disability is a word that scares people. “Good intentions” behind folks saying they don't see me as autistic, or as disabled are an indicator of how much disability is seen as a Bad Thing. Making people face the scary concept is actually an argument for using capitalized, identity first Disabled and Autistic in my case. Folks can sit with that particular discomfort, and if they tell me they don't see me that way or I shouldn't call myself that, they're getting asked 1) why they think their idea of me trumps my own, and 2) why they think they know better than I do what I should be called. If my identity is so uncomfortable for them that this is taken as attacking, we’ve got a big problem.

---

[i] That would totally be enough for me to hate being called “on the spectrum,” though.

[ii] This includes my actually being Queer, just to be clear.

Let's talk about fidget spinners and patterns.

Fidget spinners are a fad. Thinkpieces about fidget spinners, therefore, are also a fad. That's how it works, right? On one side, there's people who are arguing that these are toys (true), that they are a fad (true), that they can distract some people (true), that there is not research showing improved focus from their use (true), and that they are not an accessibility issue (false). On another side, there's people arguing that they are a focus tool for some autistic people and/or people with AD(H)D (true), that the lack of evidence is due to a lack of research and not a statement of inefficacy to use against individuals who find them useful (true), that this can be an accessibility issue (true), and that their fad nature among neurotypical students is bad (false) because it is getting the toys banned (mixed truth value). I've also seen more nuanced views, generally from disabled people, but those seem to be the two main camps.

I want to point out a pattern in how accessibility discussions go, especially in educational contexts.

1. A disabled person needs something for access reasons.
2. Abled people call the thing distracting, because our existence in public is apparently distracting.
3. The thing is either banned entirely or permitted only for people with the paperwork to prove they need it for disability reasons.
4. Disabled people who need the thing either don't have access to the thing or must out themselves as disabled in order to gain access. If outing oneself is required, the thing is heavily stigmatized.
5. Disabled people who have an actual access conflict with the thing are erased entirely, which makes conversations about possible solutions to the access conflict impossible. One set of needs or the other will "win." Any disabled people who need to avoid the thing are lumped in with the people who want to ban the thing for ableist reasons and therefore vilified. Which set of needs "wins" here varies, but it usually has some relationship to hierarchy of disability stuff and having one set "win" while the other "loses" is a bad solution regardless.

That's not just a fidget spinner thing, but it does apply here. With fidget spinners, autistic people and folks with ADHD (I'd love to know of a reasonably recognized way of talking about this neurotype without the second D/in a neurodiversity paradigm way, btw) end up in both the "need the thing" and the "need to avoid the thing" groups. I assume some other neurotypes are similarly split as well - I just don't have the familiarity to assert so. With visual alerts on fire alarms, D/deaf people need the thing. Since the visual is a strobe, a lot of neurodivergent people, especially people with photosensitive epilepsy, need to avoid the thing. With service animals, the folks who use them need the thing. People with allergies need to avoid the thing, and not everyone with an allergy can safely share a space with a service animal, even if they are treating their allergies. Conflicting access needs exist, and this pattern prevents us from finding ways to deal with the conflicts. Instead, one access need gets lumped in with abled people who don't like the thing because it's associated with disability and therefore presumed not to be a real need.

Now for fidgets: some people need something to do with their hands while listening if they're going to retain anything. I am in this group, by the way. In high school, I knit, I sewed, and I made chainmail - armor, not spam. I've also tried drawing, which takes care of the "need to do something in order to sit" issue but takes enough attention that I'm no longer following the conversation, so that doesn't work for me in class. Writing hurts quickly enough that while taking notes has sometimes been possible at university, there was no way it was going to be the answer for the duration of a school day in middle or high school. (I, specifically, should not have a laptop in class. If I'm going to need notes it's the least bad option, but least bad does not mean good.) So I did assorted arts and crafts that were fairly repetitive and totally unrelated to class. The biology teacher who told us on day one that he had ADHD was both the most understanding teacher about my need to fidget somehow and the teacher most at risk of being distracted by my making armor in class.

That last paragraph is the "no, really, I need to fidget." It's also the "there are several fidget options that work for me." Most, but not all, of the standard fidget toys will meet my needs, as I discovered because they are also a fad and I got some awesome fidget toys. This is important, when access conflicts come into play - if there are several options that meet the access need of the first disabled person, it's easier to find one option that everyone is OK with. When there are several options that work, requesting "not option A in situation W" is not an access issue, because options B through H are still fine. If we're going to come up with reasons that each of B through H are also not fine, individually, then we're going to have a problem.

The fidget toy fad is making options D through H cheaper and cooler. When fidgets are marketed as assistive technology, they are super expensive. Considering that disabled people tend not to have a lot of money, that's an access issue, so the fad is making a set of possible solutions more accessible. That's cool. It's also leading to a sufficient presence for teachers to make explicit policies about the toys (as opposed to banning them person by person), and for a flat ban to seem like a good idea to teachers who are seeing kids appear distracted by them. (My bet is that the neurotypical students who appear distracted actually are. I expect the autistic and ADHD students who appear distracted are a mix of actually distracted because they are just as distractable as any other student and only appearing to be distracted because of ableist ideas about what paying attention looks like. Remember, I'd fail special needs kindergarten as a twenty-four year old PhD student.) The explicit banning for everyone is ... not so good. Mostly because the other options are usually also disallowed or heavily stigmatized, and then we may well be left with no good options.

And let's not pretend handing everyone a fidget spinner, or any other fidget, is going to magically "solve ADHD" or whatever. I think some of the camp that's firmly against the toys is reaching that position for similar reasons to haters of weighted vests - we hand it over and the person is still autistic, or still ADHD. A tool that a person uses to cope in a less than accessible environment doesn't make them stop being disabled by the environment. Plus a fidget spinner isn't going to help everyone. Some people really will be distracted if they have something to play with, and some of those people really will be neurodivergent. Conflicting access needs, again, are a thing. If one person needs a fidget, and another needs not to be next to someone with an obvious fidget, those two people probably shouldn't sit next to each other. Giving people fidgets that they can use while the toy remains in their pocket is also a possibility in some cases. We can have conversations about access conflicts, if we admit that both sets of needs exist. (We also need to admit that some subset of the people making arguments about distraction are doing the bad faith argument where everything disabled people need is a distraction because, essentially, our presence in public is a distraction.)


[Let's also insert a plug for my Patreon. I write. I have a Patreon.]

Divergent, Gattaca, and limitations "for your own good"

Last night I participated in the #FilmDis chat about human gene editing and GATTACA. Which, even though it's been a while since I saw the film (I think the last time was in 2010), I have opinions about. It's a film about eugenics, and in a very real sense it's about eliminating disability in most people but creating a new genetically inferior (disabled) underclass that looks a lot like the old one, people who couldn't afford to have their kids genetically selected birth this underclass. So do people who leave their children's genes up to luck. (AKA, the protagonists parents, at least the first time.) But the only person we see in the movie (which is largely about disability discrimination) who we'd discriminate against today? He's got an acquired disability. It's not genetic. And he's the one who's genetically valid, selling his genetic identity and thereby allowing the protagonist to get in the door to his dream job.

And Divergent is a series I have opinions about. I loved what looked like neurodivergent representation in the first two books, except for the part where I knew what was coming: the Divergent are secretly neurotypical and everyone who really fits a faction has "genetic damage" making them neurodivergent. And sure, we build a city in the end where no one really believes in genetic purity vs. genetic damage, but all through the series we're shown the functional superiority of Divergent people: Tris, do your Divergent magic, think like the Erudite and tell us what they'll do! Tris, come in first in initiation and have it clearly be about your Divergence. Or ... your neurotypicality.

So it's probably not shocking that I want to connect them? They've both got genetic engineering and discrimination based on genetic makeup. And I do:

A6 I want to link #GATTACA and #Divergent here. But I usually go to sleep over an hour ago so it's not working well. #filmdis

— Alyssa (@yes_thattoo) February 19, 2017

A6: I think it's both films limiting people based on perceived genetic defect in the name of wanting the best? #filmdis

— Alyssa (@yes_thattoo) February 19, 2017

You see, the entire idea of factions in Divergent is about behaviorally conditioning people to behave in ways that takes their presumed "damage" to an extreme, in a way that's hopefully useful. This ... actually reminds me of Specialisterne? More on that later, maybe. They think it's the kindest thing to do, giving people a way to be useful while using their supposed strengths (that are secretly still defects.) It's still limiting people based on an idea of what their potential is, for what is supposed to be their own good.

And several times in Gattaca, we see Anton attempt to dissuade Vincent from his goals, in the name of "protecting" his "invalid" older brother. He should take the jobs that "invalids" can get, not try to go to space as he's always wanted. He should leave the company he works for. He should accept that his genetics really do make him inferior and work from there, for his own good (for his own safety.) And maybe it would be safer. (Isn't it usually safer, at least in some ways, to stick to the paths laid out for you as acceptable?) But this sort of limiting people for their own "good" and to keep them "safe" exists in the real world, for disabled people. And guess what? It's not actually safe!

So in both Divergent and Gattaca, we have people limiting others (or trying to) in the name of their own good. Adults who only want the best for us, hurting us because of what they do not know. (My fear is not of water, and now I remember Vincent and Anton competing in the water. He didn't save anything to get back.)

Party Giraffe, Hot Spicy Autism, and Small Acts of NO.

By inclination, I'm a bit of an imp. I will say a true thing (I'm nonbinary) in a slightly silly way, messing with people using truth. ("Good man. Wait. Woman." gets responded to with "still no" followed by "nonbinary, good luck".) This is a character trait, not an isolated incident. On National Coming Out Day, I wrote "I draw cool stuff using straight lines, which is funny because I'm not straight." One day when I was pointing out "typos" on the white board while non-speaking, I was told to "be quiet." So I wrote on the side board, "I didn't say anything!" It was technically true. 

I like puns. (Nonbunnary!) I like satire. (Turn it Down Taupe!) And while I wear many metaphorical hats (mathematician, engineer, graduate student, teacher, Autistic person, "person in the lab who can sew", writer, AAC user, Queer person, culturally Jewish person, "that weird person who doesn't get cold", and on and on), I don't necessarily choose to emphasize the set of hats I have in common with the other people in the room. I tend to emphasize the ones that are most effective for messing with my colleagues, even. See again: bit of an imp.

So of course it makes sense that I would have shirts that say things like "Autistic Party Giraffe" (explanation), "Hot Spicy Autism", "We Are Like Your Child", and "I Love Someone Lacking Autism." Recently, I've started wearing those shirts more frequently. And yes, I can trace this back to the election. 

No, I don't think that wearing my identities on my shirt (or my bag, as I've been known to do) will magically make everything OK. That's not the point. Reading Trump Presidency to be Large-Scale Replication Experiments in Destructive Obedience: Here is How to Resist will help the actual points make sense, though. Even though Milgram's experiments were based on a pretty unrepresentative sample in terms of people generally, it's 1) a decent sample in terms of who tends to have power in the USA, and 2) not the only study that's been conducted, though Dr. Alfano's link on the subject loops back to his own post, presumably accidentally. In any case, I'm not after the "most people obey" information. I'm after the "what did the disobedient do?" information.

Point the first: If you want to be able to refuse immoral expectations later, starting earlier helps. There's not been any orders about wearing snarky autism T-shirts, and I don't expect there to be. Why would there be? But I said expectations, not orders, and there's a reason for that. Preemptive obedience (doing what you expect the authority figure would want before there is an order, or on things too small to ever deserve an order" is a thing, and not doing that would logically fall under refusing/resisting early. So instead of hiding or closeting the identities that an incoming administration wouldn't like, I get more open about them. I get (visually) louder. T-shirts. Flapping and rocking in public. Using AAC as a teacher. Throwing myself conspicuously into a wall at the American Academy of Arts and Sciences. There can be no compliance ahead of time, because there should be none later. (As opposed to because I think the ahead of time bits are going to fix things on their own. I don't. They just keep me in a "no, you move" sort of mindset for when I'll need it.)

Point the second: Resist noticeably, and you increase the likelihood that those around you who notice will also resist. I don't want to be alone here. 

Point the third: I'm a Queer Disabled Jew. I may not be near the head of the line of people who'll be victimized, because I am also educated, also have class privilege, and am not Muslim. But I've heard the rhetoric about queer people (including trans people, remember that I'm nonbinary?) and about disabled people. I've seen the antisemitism getting more obvious. Let's not pretend I'm not in that line, even if people sometimes forget. (Read: prefer not to think about it?) So when paying attention to the individuality, to the personhood, of (potential) victims is part of how you make it easier to resist, reminding people I'm on that list seems like a good idea. 

I know myself. I know that, impish nature and all, it took me until I was eleven to figure out, even in theory, that intentional defiance was an option. A special education teacher had to tell me, so I'm not sure how much I can claim to have figured it out. There's a heck of a lot planned that I'm going to need to resist. So I'm going to need all the help I can get. (All the help I can give myself.)

#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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Not everything is possible (And I get a lot more done when I admit this)

There are, in fact, things I can't do, no matter what mindset I am in. There are, in fact, things where it is not worth my time to try it again and bang my head against that (metaphorical) wall one more time, just to satisfy people who say I won't know until I try. (Usually I have tried the specific task already, which means I should get to know by their logic? The rest of the times, I've tried enough sufficiently similar things that I can predict what the problem will be.)

Now, this is probably the part where you want to tell me not to be so hard on myself. You might want to tell me that the only disability in life is a bad attitude. (Maybe, just maybe, I'll shoot back that my primary disability is y'alls bad attitude about my realities.) Maybe you want to tell me that anything is possible, and tell (not ask) me how much I'm limiting myself this way.

Because I used to think that if I just tried harder I could, in fact, do anything, I actually know what my abilities look like that way. I'm still working on the details of what my abilities look like when I recognize my limits (which is not the same thing as limiting myself, to be clear. I do not bring these limitations into existence by recognizing them.) But I can tell you this: Overall, I get more done  (not less!) when I admit that there are things I can't do. 

I get more done when I recognize that I am not going to gain the ability to independently organize my space on the n+1st try, and that I should wait to try this whole organization thing until the person helping me is ready, because I don't spend all my energy on it until there's someone there to help make sure I'm spending it in useful ways. (Organizing my room still costs all my energy for the day, but it at least ends with organization.)

I get more done when I recognize that my exception handling is not suddenly going to work normally just because that would be convenient. (Weirdly enough, this exception handling issue as it relates to sudden schedule changes is one reason that pushing through pain or illness to finish whatever I was planning on doing is actually the smarter choice. Which sounds like the opposite of limiting myself, at least to an outside observer, I think? That I'm doing a thing while sick or tired or injured because I know my limits even sounds counter-intuitive to me, and I know it's sometimes true.)

I get more done when I recognize that this exception handling issue (plus whatever else is going on with certain kinds of questions that cause them to create an exception in the first place) will, in fact, prevent me from doing many surveys and evaluations. If I'm not burning out most or all of my energy for the day on some survey my program asked me to do (and which they thought would be a 5 minute easy thing), I still have that energy for literally anything else.

I get more done when I recognize that I can't actually stay in a room with a flickering fluorescent light or troubleshoot a circuit with an LED flashing at 5-20 Hz. That's because said flashing lights will, given time, knock out my ability to speak, possibly my sense of direction, and definitely my ability to concentrate on anything other than make it stop. Turn off the light. Unplug the circuit while I try to determine what's wrong with it. Replace the 0.1 microfarad capacitor with the 1 microfarad capacitor to get a .5-2Hz flash rate on the LED, or with 0.01 microfarad for 50-200Hz that I can't see flashing. 

I get more done when I recognize that I am not going to be able to cook three meals a day for myself (and not even one consistently if I'm working from scratch) because I can plan around this. At university, I have a meal plan. That keeps me fed. At home, I cook a large pot of something once or twice a week and eat it until it's gone (then stare sadly at the pot which no longer contains food because I am hungry and there is not a food.) This doesn't work as well as the meal plan does, but it works much better than believing that if I just try one more time, I can cook three meals a day. Because I am spending less time trying to make food happen and more time fed, I can get more other things done too!

I get more done when I recognize that I do, in fact, need to stim and probably shouldn't be faking eye contact all the time. (No, really. Letting myself flap and rock made the difference between always absolutely needing 10 hours of sleep per night with people being able to tell the difference if I got "only" 8-9 hours of sleep one night and my being completely fine with 9 hours as a regular thing and OK with 7-8 occasionally.)

I get more done when I recognize that I am not going to work 40 hours in a week. (I'm going to suggest that anyone who's ever seen my class schedule not run the numbers for this statement, because you will be at least as confused as I am by how this works. I'm pretty confused even while knowing from experience that it somehow does.) I get more done because I'm not staring at whatever my work should be and not recovering when I burn through my mental energy in two to three hours. I rest for several hours and can sometimes (not always, but sometimes) get a second good shift of an hour or three writing things that needed to be written, doing homework, reading for classes, preparing to teach, editing work before I submit it somewhere, or reading for the purposes of my writing. That's more done than when I tried to work straight through, just to be clear. Less time total that looks like work, but quite a bit more done and similar amounts of time that are actually work.

I get more done when I recognize that I can't do a hackathon or any other kind of event that involves working for a marathon amount of time at a sprint level of intensity while going short on sleep. (Actually any event or combination of events that puts me short on sleep for more than a night or two is usually out regardless of intensity, and it's definitely not happening during the semester.) Making myself ill over the weekend by burning myself out to the tune of needing two or three days completely off to recover... when the next day is Monday? Yeah, I can't do that. (Seriously, do you think I'm going to gain the ability to work a 40 hour week by putting all 40 hours onto 2 days?) A more extreme version of the work model that already doesn't work for me only fails more obviously. 

I have better class participation when I don't try to force speech until it's gone, then fall silent because if I had something to say I'd be able to say it. Switching to writing when speech gives out means I can keep participating, that I can show what I know and help my classmates when they are having trouble, and that I can ask questions if I need help. Switching to writing at the point that writing is simply easier overall lets me save energy so that speech might not even give out entirely! That comes in handy if I have sports practice after class, or if I'm going anywhere that doesn't have a white board. 

I have a better time on vacation when I recognize that I'm not going to enjoy speeding from activity to activity at a breakneck pace and will eventually melt down if I try. I still want a calm hour alone on my computer in the morning and similar at night. (I also wake up earlier than my family by enough that it's really easy for me to get that morning hour.) So I bring my laptop on vacation, even if I'm not planning to work, even though the others don't. 

I can't stop you from believing that I'm limiting myself (as opposed to recognizing limits that are already there and being happier and healthier while doing more things I care about because I'm not banging my head against the stuff I can't do.) I can, however, explain so that 1) I remind myself that I'm doing what works for me, and 2) others like me can read that they are not alone.

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Disability in the Graduate Assistants Contract

Two years ago, I suggested to my graduate assistants union that disability and accommodations should be covered in our contracts.

I could understand why it hadn't been there before:

1. It's not the sort of thing most people automatically think of unless they are themselves D/disabled or have a disability.
2. The accommodations/access side is theoretically covered by laws like the Americans With Disabilities Act anyways.

But for a few reasons, I thought it needed to be there:

1. Enforcing the ADA is really hard for most people, because it involves filing a lawsuit with the department of justice. Yes, even the threat of a lawsuit can be effective at times, but it generally needs to be at least a semi-credible threat.
2. If it's in the contract, then violations can also be handled by having the union go to bat, such as by filing a grievance. That's got more force than showing up in an office and complaining alone, but is generally easier to accomplish than filing a lawsuit. This is important because many professors do refuse to ensure access for students, and many departments do actively exclude disabled faculty members.
3. Attitudes: If following relevant disability laws is explicitly stated in the contract, even if it is a bit redundant (and as an engineer, I like certain kinds of redundancy, including this particular kind,) tells people that there's a group on campus that cares about the disability side of things, beyond just disability services (who don't negotiate the graduate assistant contracts.) There being such a group is a whole lot more welcoming for folks who find disability issues relevant than there not being any groups like that is!

And one more reason that occurs to me now but I didn't think of at the time:

•  Graduate assistants are both students and staff. Students handle accommodations through Disability Services for Students. Faculty and staff handle accommodations through Human Resources. Where do graduate assistants go, since we're both? That being unclear would be a barrier for anyone who has issues with bureaucracy. So would an answer of "Do both, haha," because that means dealing with two different offices for one issue.  

Well. The executive board for the union agreed, and none of the union members objected. They pushed to get disability language into the contract, beyond the list of thing they're not supposed to discriminate against us for. (And disability definitely belongs on that list.)

Contract negotiations happened. While the university negotiators tend not to like adding information that's already in other places to the contract or even referencing those other places in the contract, they did add a line about disability accommodations.

4.5 Disability Accommodations– The Administration and GAU shall adhere to Federal and State laws and regulations as they apply to treatment and accommodation of persons with disabilities. Requests for accommodations shall be submitted to the Office of Disabilities for Students.

Am I totally satisfied with that? Not completely. I think it's progress, since there wasn't any information about accommodations before. I know that contracts are all about basic compliance and lagal language. I've still got the same issue with "will follow Federal and State law" here that I do with it on syllabus statements and generally everywhere.

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