I still exist!

 It's been a bit over 2 years since I've posted here. I doubt that I'm going to become super active here, but I do still exist. I'm fairly active on Twitter, though outside of hashtag chats like #AutChat and #ATChat I retweet more than I make new tweets. Some highlights from the past two years include:

• A pandemic, which is still ongoing.
  
  
• The chemistry labs I were teaching in Spring 2020 went online on very little notice, with an extended spring break followed by 'how to finish a lab online while most of the students can't get at the lab notebooks they left on campus.' It was an entire mess.
  
  
• My dissertation research went remote. Again. [Before, I specifically was remote because the office was full of sensory triggers. This time, everyone was remote.]
  
  
• I got covid. Mild case, no new cognitive weirdness, still not a fan.
  
  
• I finished my Ph.D. in Interdisciplinary Neuroscience. My dissertation was very much towards the engineering side of things, on one specific kind of brain computer interface as used by people with amyotrophic lateral sclerosis. My dissertation is also done, though I still need to turn the last chapter into a journal article or a conference paper or something of that sort.
  
  
• I did a round on the academic job market. I'll be teaching one undergraduate neuroscience class at the University of Rhode Island this upcoming spring, but I didn't get a full time academic position. I've been applying again this round for jobs that start in academic year 2022-2023.
  
  
• I am currently doing a mix of teaching for the Art of Problem Solving, work for AssistiveWare, and other research, much of which is related to augmentative and alternative communication.
  
  

 

Five Meals

Hi all, long time no see, time for a "meet the blogger" type post to see if I can get myself writing. (It's been a rough year, and not just because of the political situation. Though being scared of that makes things much harder.) Anyways.

1) my moms chicken noodle soup
2) 拉面 (la/lo mian/mein), as done at small places in large Chinese cities
3) Mac and cheese with cayenne and tuna
4) Lamb vindaloo
5) Three layer chocolate cake with chocolate whipped cream frosting I make for my birthday https://t.co/X5xlOYRIOU

— Alyssa (@yes_thattoo) September 4, 2018

That's the short version. Food is an important part of culture, and of who we are. That's true of both the special foods (that cake!) and the everyday (mac and cheese).   Here's the explained version of why I think each of these five dishes tells you something about me.

1.  Mom's chicken noodle soup means home, and it means comfort. When I get sick, this is what I want to be eating. It's a very concentrated broth (sometimes made by starting with store-bought chicken broth and then boiling the chicken in it) made entirely with legs and thighs instead of a whole chicken. Noodles are done separately so they don't get soggy, and so mom and I can have different soup:noodle ratios. I basically want a bowl of noodles and chicken with a few pieces of vegetables, barely covered by broth. (My non-Jewish stepmother actually makes a more "traditional" Jewish chicken noodle soup than my Jewish mother does, but that's because my mom modified the recipe so we'd like it better.)
   
2. 拉面 is something I ate a lot of every time I studied in China. It's a noodle soup, but Chinese instead of traditionally Jewish. Long, thin noodles in broth, with some shaved meat (beef, where I got it), some vegetables, and a pot of spicy oil available somewhere if you wanted to make it spicy. At the place on campus at 浙江大学 (Zhejiang University), there were just the two options, a small bowl or a large bowl. Most other places where I ate this had a variety of noodle dishes, but this is the one that was already familiar. It was also the cheapest, and I was a student.
   
3. Mac and cheese with cayenne and tuna: Think boxed macaroni and cheese, but we buy our own cheddar cheese powder in bulk so it's not technically box mac and cheese. It's the same basic recipe, but heavier on the cheese, butter, and milk (whole milk!), and then we add some extra spices and put tuna in it. Cayenne is the main extra spice. When I get queasy, this is one of my safe foods. I'm aware that's weird, but it works. (When I was in Tianjin and couldn't cook, I put noodles in my basket at local 麻辣烫 place for my safe option of "absurdly spicy noodles." At restaurants in the US that have it, a seafood alfredo is usually as close as I can get, and will be my order if I'm queasy.)
   
4. Lamb vindaloo. From my sophomore through senior years of high school, I was on the Eastern Massachusetts team for American Regions Math League. (Well, the E team for it. We sent three teams and went A, E, B for some reason that I never understood and never really asked about.) While we were in Pennsylvania for the competition, I went to an Indian restaurant with some of my teammates. I forget what I got. A teammate with no spice tolerance got vindaloo. I finished his vindaloo, and it has been my favorite Indian dish since.
   
5. Three layer chocolate cake with chocolate whipped cream frosting I make for my birthday. I got the recipe from my dad, who also makes it for his birthday. He makes it for one of my sister's birthdays too. We all have the same favorite chocolate cake. The recipe comes from a book of chocolate desserts. When I make it, I use a darker chocolate and slightly more of it than the recipe says, and we all take it out of the oven a bit earlier than the suggested time so as to get the suggested texture.

I'd rather see a student psychologist. Really

I'm in therapy right now. I have been (in this iteration) since late January, both dealing with deaths in the family (three this semester, one of which hit me harder than most - that was my grandfather near the start of January) and trying to get something resembling a handle on my anxiety. On the to-do list is gender-related stuff, eventually, since I do have some physical dysphoria in addition to the social stuff. But that's not the point. The point is that I actually prefer to have a student as my therapist, and there are a few reasons.

1. Students are usually less confident. That might seem like a disadvantage, and I suppose it could be for some people, but in my case it's important. I am very good at being an outlier. Someone who is confident in their expectation that things that work for most people will work for me ... is not going to be a good match, because they are often going to be confidently wrong.
   
2. Students knowledge is as up to date as it is ever likely to be. It's a reality of graduate school that we have to be reading a lot of recent research. It's a reality of regular practice in most fields, including psychology, that people don't have time to be reading that much recent research. There are, of course, exceptions, but in general your best bet for the most up to date information is a current graduate student.
   
3. Those two things combine to increase the likelihood that students have heard of neurodiversity and are at least open to the idea. I'm not actually the one who brought up neurodiversity in my sessions, because my initial focus was on grief. My autism was only relevant in the way it's always relevant: the way my brain is wired up affects how I process literally everything, including grief. At some point it was relevant and the therapist I'd been seeing asked me if I'd "heard of" neurodiversity. (I think this must have been the day I my ability to speak went out part way through the session and I switched over to typing, because I didn't burst out laughing immediately.) Yes. Yes, I have heard of neurodiversity.
   
4. The psychological consultation center on my campus doesn't take insurance, but it runs on a sliding scale based on income, and sessions are $5 for students. That's cheaper than co-pays even on most good insurance.

Between these factors, I'd really rather go to a clinic where students are being supervised. Folks there are more likely to be a reasonably good match for me.

Not the way you mean

In my experience, a lot of questions get asked as proxies for other questions. Sometimes the two questions have different answers. Most of the times I can think of this happening have been somewhat medical. Which might be its own pattern, or might be because I notice/remember it more when the difference matters more. I'm not certain.

Example the first: Have you fallen in the last six months?

Every time a doctor has asked me this, they've wanted to know if I have balance issues (kinda, but they're not getting worse). They may or may not have appreciated being told that when a beginner ice skater crashed into me from behind, I did hit the ice. They may or may not have appreciated being told that my brother successfully tackled me during a backyard football game. They may or may not have appreciated hearing that I wiped out once on a week long ski trip. Whether or not they appreciated my precision in answering the question they actually asked, it's not the information they were really looking for. Mostly, I'm a clumsy person who tries to athlete anyways.

Example the second: Have you had any bruises where you don't know where they came from?

Bruises without having some sort of noticeable physical impact or injury first can be a sign of a bunch of health issues. If we have bruises and don't know where they came from, that's a possible explanation. In my case, a bruise that I don't know the exact source of is actually a bruise where I can't tell you which of the assorted desks, walls, chairs, tables, or poles I clipped my hip on actually left the bruise. It is over-explained, not unexplained, but I technically don't know where it came from.

Example the third: Have you been convinced something is wrong with a food or beverage when everyone around you says it's fine?

This was at a psychology intake. Given the context, I'm reasonably certain she wanted to know about paranoia. Here's the thing. I have sensory processing issues. Most people around me think scrambled eggs are food, but the texture means I disagree. Strongly.

Example the fourth: Have you ever been convinced something was medically wrong when the tests were coming back fine and the doctor said you were fine?

Psychology intake again, probably about paranoia again, but let's be real: this also happens to most people with a chronic illness at some point, and they (we) are 100% correct that something is actually wrong. Also, I have an 8 year old dent in my shin that wants you to know doctors can miss broken bones on X-rays.

Example the fifth: Have you ever heard things that other people around you did not hear?

Psychology intake still, standard question I'm pretty sure. They've asked me that every time I've had an intake. Yes. I hear things other people around me don't hear. It's called being 25 and still being able to hear up to 20000  hertz. In combination with sensory processing issues, this is really not fun, because that sound that I am experiencing significant pain from is completely outside the range anyone around me can still hear. Ow. It's not an auditory hallucination, though.

It's kinda funny

So, a few weeks ago I met with two folks from a company that's making a computer game or a video game related to autism and social skills. I agreed to meet with them for a couple reasons:

• The one I'd met before, I met at a hack-a-thon like event (un-hack-a-thon?) that was autism focused and had many autistic participants, mostly teenagers, and which used Nick Walker's description of autism as a starting point. Starting from a neurodiversity paradigm description of autism is nice, and not something I see much of for technology and autism stuff.
  
• The one I'd met also liked the "Autistic Party Giraffe" shirt I was wearing. I find that people's opinions on that shirt are somewhat useful information: folks who comment on liking it are generally able to handle the idea that Autistic identity is a thing without too much worldview conflict.
  
• They clearly didn't quite know what "supporting autistic people in finding social methods that work for us" would really mean, but the couple ideas I'd thrown out at Chatter went over well. Things like, if we can get more done by not trying to pass for neurotypical, why the heck is passing for neurotypical considered an optimal outcome? (See Dani's "On Functioning and 'Functioning'," yet again.) 

So, I did the thing. It was exhausting. We met at a coffee place between my campus and the train station on a Friday morning, and we talked for about two hours. They said at the time that what I was saying made sense, and that it changed their perspectives, and now they needed to figure out how to navigate the tangled mess of doing something actually helpful with their game while also getting the needed funding to make the darn game.

One incident that sticks out for me was the demo video of the game. They brought a laptop, and there was a minute or two of gameplay video that I watched. When it first started, there was a big face and eyes right at me. I flinched. Unexpected face in my face! Then there were points where a player was supposed to recognize the emotion that this being was expressing. The emotions were clearly overacted, both in terms of facial expressions and tone of voice. This was supposed to be some sort of "easy" mode, I guess? Whatever. I could tell it was overacted. That didn't mean I could always tell what emotion was being overacted. (Yeah, I got some "wrong.") 

Judging by their reactions to my reactions (how meta theory of mind can we go here?), it seems I served as an object lesson there:

• Identifying that an emotion is being expressed is not the same as identifying what that emotion is.
  
• Managing OK in real-life social situations is apparently not the same as recognizing overacted emotions in artificial settings.
  
• Some autistic people will absolutely flinch from unexpected eye contact. Ow.

It's a thing that happened. I was super tired after. 

Jobs for autistic strengths and "autistic strengths"

Full disclosure: Real Social Skills got me thinking about this with some tweets (first tweet, second tweet, third tweet), and then a blog post, both of which I think you should read. That said, I think my thoughts are parallel rather than identical and it's still worth my writing my bit.

To me, what she's saying reads a few main points:

• Some models of autistic strengths assume that attention to/liking of detail is one of the strengths.
  
• They then assume this means we will enjoy repetitive, detail-oriented jobs most people find mundane.
  
• That's still putting us into different sorts of jobs than everyone else (segregation!) but calling it strengths based and assuming we're all the same.

Since this is May 1 (Blogging Against Disablism Day), I've got some "spot the (dis)abl(e)ism" thoughts. Let's break those down. Here's what I'm reasonably certain isn't ableism:

• Thinking it's a good idea to play to an autistic person's strengths does not read like ableism to me.
  
• Recognizing that some strengths may be statistically common in autistic people does not read like ableism to me.
  
•  Understanding that the jobs we find interesting or want to do may be different from what "most people" find interesting or want to do does not read like ableism to me.

Helping an autistic person find a job that's a good fit for them based on their (autistic, since they are autistic and autism is pervasive,) strengths would also not read like ableism to me It would be helping someone find a job for their autistic strengths. Unfortunately,  the way programs around finding jobs for "autistic strengths" often run ... does have ableism involved.

• Assuming that "autistic strengths" means exactly a certain set of (perhaps statistically common) strengths is treating us as a monolith, and therefore ableism. Not all autistic people are detail-oriented, for example. (I appear to be a lot more detail-oriented than I really am thanks to pattern-recognition.)
  
• Assuming that a given strength will correspond to a given interest is stereotyping based on interests. If you're only doing this in the presence of an assumed disability, it's ableism. If not ... it's still inaccurate stereotyping but it might not be ableism?
  
• Celebrating how we can therefore do these jobs other people find boring and pushing us into those jobs is effectively workplace segregation, definitely stereotyping based on autism, and therefore ableism.

And this is what a lot of autism employment programs seem to be doing. It's not what we need. My jobs? Based on my actual strengths, some of which are a bit stereotypical and some of which are decidedly not. Math? Yeah, I'm good at that and I like it. People tend not to be surprised by that one. Grading? I guess that involves attention to detail, or pattern recognition that makes breaks in expected patterns stand out. Teaching? Seems a bit social, yes? Well, explaining things to people in ways they can understand is absolutely part of my skill set. As a student, I often explain math-heavy neuroscience papers to my non-math classmates in the neuroscience program. As a teacher, it means finding the way to explain a given concept that actually makes sense to my students. I don't think any autism employment program is going to suggest that a person who can't always talk become a teacher, but that's what I do. Editing? I guess it's attention to detail, but it's also language. None of my work has been in areas typically considered "boring," and a lot of the work people consider "boring"? Really wouldn't be a good fit for me. Assuming it must work for me because I'm autistic isn't going to work. I'm an Autistic person, not a machine made of autism stereotypes. 

Are you still afraid of anything?

I got asked that yesterday.

Thought the first: You're joking, right? Anxiety is a big problem for me. What's wrong? I dunno, but something must be. (Or sometimes I do know, the thing I'm worrying about is unlikely to impossible, and my brain is just being a troll. Or sometimes I do know, the thing I'm worrying about has actually happened to me before, and I therefore can't tell my brain it's just being a troll.) ... yeah we just asked someone who has anxiety if they're scared of anything. The answer to that question is yes. This does not seem complicated?

Thought the next: The person asking me this has seen me dealing with a thing I'm afraid of ... pretty often, actually. I'm scared of heights. Like, really scared of heights. I can (and often do) have bad moments with the fear of heights when walking down stairs kind of scared of heights. That might be related to my having fallen down the stairs when I was younger. Here's some things they've seen me do:

• Go on tall roller coasters, including Batman and Superman (Bizzaro?) at the nearest Six Flags.
• Zip line between mountains.
• Rappel down a 150 foot waterfall.
• Climb "rock" climbing walls to nearly the top (but also get stuck 3 feet up a bunch of times.)
• Ski.
• Descend stairs. Remember, that can and does set off my fear of heights.

Thought the next: I'm afraid of driving. That's part of why I didn't get a liscense until I was 23. It's also a fairly rational fear, for several reasons. First, I've got sensory processing issues that make driving overloading. If I'm starting off in good shape and with a lot of energy, I can drive safely, but I hate it. Second, I tend to lose speech when I drive. Getting pulled over while non-speaking, even as a white person, sounds like a seriously bad time. Thanks, but no thanks. And yes, this person knew that my not driving was related to a fear of driving.

Thought the last: I am (sometimes/somewhat unwisely) Gryffindor. Looking at my behavior in order to tell if I'm scared or not tends not to work very well, because my inclination when I'm scared is to do the thing anyways. Scared of heights? Yes, let's go on the roller coaster. That sound great. Looking at how I act in order to tell what scares me works even less well because I, like many (most? probably most) autistic people, have been taught not to show or act on fear or discomfort because it's "weird" or "faking for attention." (Spoiler alert: It may well be weird, but I am definitely not faking. Stuff that doesn't bother other people is often painful for me, and vice versa.) And ... this person is one of the people who's denied that people's perceptions could possibly work the way mine do. So their not being able to tell when I'm scared? Not just because I'm (sometimes/somewhat unwisely) Gryffindor.

Legal protections and shaky ground

I have, I think, finally figured out why I felt less safe, not more, after turning in a formal accommodations letter for the first time this past summer. (That was nowhere near the first time I've had those same access needs I've got the letter for met at university. It was just the first time I had to turn in the letter.)

It's a pattern. When I just turned the letter in, without asking first if the professor cared about the letter, I didn't feel less safe after turning it in. (Note to self: Maybe stop asking, since some will care.) When I turned the letter in with a comment of "don't know if you need this or not, but here it is anyways" and I got a response in the area of "thanks but yeah, don't need it," I felt more safe than I had before turning the letter in. But it was the same amount of more safe that I've felt the times the answer has been that the professor doesn't care about the letter.

Which makes me suspect that the letter itself is less than relevant. My having the paperwork to prove I am entitled to "accommodations," as they like to call it when my access needs are met, that's not the issue. (Seriously, y'all aren't changing anything about the class structure when I use AAC, it's important and it's apparently unusual but I don't want to talk about my typing as something that you're accommodating me specially to allow.) My turning in said paperwork is also not the issue.

Depending on an often inaccessible, bureaucratic process that requires a probably-abled "expert" document that I really qualify for the diagnosis I'm claiming accommodations under in order to access my education and my work, on the other hand? That's an issue. Having said process done so it can back me up on the off chance I need it is useful. I'm glad those legal protections exist. They're important. They're good to have as backup. But I don't like relying on the backup any more than the next person. And I'd much rather have access happen because it's what should happen than because some paperwork says it legally has to happen. Or that some part of it legally has to happen -- my paperwork says I get text-to-speech, and that's actually my least-used AAC solution. 

In which I flip through my textbook and react to something

I'm taking a course on motor speech disorders this semester. (Was this a good life choice? We'll find out! Were my other classes this semester good life choices? Again, we'll find out!)

The text, for anyone wondering, is Motor Speech Disorders: Substrates, Differential Diagnosis, and Management, 3rd edition by Joseph R. Duffy.

"The decision to use AAC strategies is based on careful assessment of speech and communication abilities and needs, the prognosis, and the individual's potential to benefit from them." (387)

I guess?? I mean, I have to assume that's the way it's professionally done. In my experience, the decision to use an AAC strategy is made in the moment when speech isn't working right now and I need to do something. My first several decisions, the first several times I used it, were certainly immediate and uncareful need something now choices.

I'm in a Chinese language classroom in Tianjin, the teacher just asked me to speak, and I can't. I need to do something. I pull out my iPad (good thing I have it today!), open Notes, switch the keyboard to Simplified Chinese input, type something quickly, and hand it over to the student next to me, who reads it aloud.

I'm in measure theory on Yom Kippur (I fasted, but still went to class) and the professor asked me a question. (I don't remember now what the question was.) I can't speak. I don't have my computer or iPad with me. If I write in my notebook, it'll probably be mistaken for ignoring the question/continuing to take notes, because I was taking notes before and he doesn't know speech goes out on me yet. In any case, that's not likely to meet my immediate need. So I reach for a whiteboard marker and start writing on the side board.

I'm not waiting for someone to evaluate how much I can benefit from an AAC solution while I can't speak. I'm just ... not. That's not a thing. I'm getting into situations where I need something now, and I may or may not be grabbing the best solution. It hasn't carefully evaluated by an expert. I'm grabbing the first solution I can think of given my environment. My decision to acquire dedicated applications for AAC on my iPad and laptop was a bit slower and more considered. I didn't look into those options until I realized that speech giving out on me was going to be a regular thing (honestly had been a regular thing for some time, I'd just not communicated with language while speech was out before.) I asked around. There wasn't any sort of formal evaluation. (Though one might have been handy.) Has anyone expert looked at, well, any of my set-ups? Nope. That hasn't happened. Could they come up with something better as long as they recognized that I really do AAC? Probably.

I'm not certain if this is a commentary on how usually verbal and fluent-seeming autistic adults don't get the assessments for communication supports we could use, or if this is a commentary on gatekeeping where someone other than the disabled person is deciding whether or not to implement AAC. Maybe it's both.

RPG/Nonbinary

Heads up that gender binary stuff is going to be discussed, largely in terms of my reactions to it playing Runescape, an online role playing game. So is dysphoria, both with my actual body and with a digital avatar for the game.

I've played Runescape for quite a while. Long enough that I've watched the graphics change quite a bit. Some of these changes are nice (Priffinidas looks pretty cool. Also, I gave my avatar purple hair and purple wings.) Some are ... not great for me. (The female avatar's chest is quite a bit more noticable than it used to be. Also, armor designs look different based on male vs. female avatars in a way the graphics didn't used to be good enough to support properly.)

In the ideal world, there would be an androgynous option. I don't live in that world. There's male avatars and female avatars. If you use a male avatar, you have shorter hair options (darn), a flat chest (yay), armor graphics that would actually protect your torso (yay), usually facial hair (whatever), and he pronouns (whatever.) If you use a female avatar, you have both short and long hair options (yay), a chest that is definitely not flat (dysphoric), armor graphics that show off said chest (dysphoric), only the new "pirate" beards from a recent event as facial hair options (whatever), and she pronouns (whatever.) "They" pronouns aren't an option, no matter what avatar you're using (darn.)

When I first made my account (and I do still use my original account from middle school), I didn't know I was nonbinary yet. So, of course, I used my assigned gender and made a female avatar. Over time, I started having issues with this. (Hi, dysphoria is a thing.) My original avatar looked a bit like I physically do -- long brown hair, skin that's on the dark side for a white person but still a white person, and a tendency to wear purple. It even had a long braid for a while. As graphics advanced and I became more aware that my problems with the avatar were dysphoria, I made my avatar look less like me. Purple hair not in a braid, purple skin, wings.

But I was still having trouble. Some of the armor options I liked were dysphoric to look at on my character. (Thank blob for cosmetic overrides. I used those heavily, and still do, so the "look" of my character doesn't change when I change the armor I'm wearing. This got me around that problem, at least.) It took me a while to think of "switch the avatar gender" because I'm nonbinary, and that means that a male avatar is still incorrect. However, in terms of the characteristics that show up in Runescape, it's closer. Flat chest for the win. (That's my primary dysphoria issue in meatspace, and it remains so with digital representations.) The pronouns are a question of the usual wrong answer (she) vs. the unusual wrong answer (he) and it's easier for me to be amused by the unusual wrong answer. (They/them/their is a right answer.) And with actual items + keepsake keys, I retain the ability to put my avatar in a skirt. This works so much better.

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.)

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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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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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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Switch out the capacitor

This semester, my teaching assistantship is in electrical engineering. (And for as long as I'm a TA instead of a research assistant, I suspect it's going to stay in electrical engineering or similar, since electrical, biomedical, and computer engineering is the department my advisor's in.)

So now I'm one of three responsible people in the room for a digital circuits lab. (All three of us speak Mandarin, which is cool, but not the point of what I'm writing today.) They've both been doing circuits for much longer than I have, which is to be expected since I'm brand new to electrical engineering. Still, I'm a pretty quick study and I have very good pattern recognition, which comes in handy when my job mostly means troubleshooting other people's circuits to figure out what's wrong.

This isn't about my ability to troubleshoot circuits, really.
Unless it is, because I can't troubleshoot a circuit while looking at a light that's blinking at 5-20 Hz. The light is small enough that I'm (mostly) OK with the light near the edges of my vision, but the blinking light is the signal on the circuit I'm troubleshooting, which means it's on the circuit I'm trying to fix. That's not going to work.

"Alright, I'm turning off the power. I can't work with the flashing in my face and you should turn the power off when moving wires anyways."

That's method the first. You've got two reasons to turn off the power (plus "the teacher says so") and one of them is a safety thing they've been taught but tend to ignore. I'm still telling you what my need is (no flashing lights in my face) but it's not the only reason for what I'm asking you to do. I tend to go to this first if the problem seems to be with the circuit.

"Can you switch out the capacitor for one size up or one size down? I know this is the one on the lab sheet, but I can't work with that blink rate."

That's method the second. It eliminates the bad flash rate permanently, which is good, and it lets me leave the light on while trying to figure out what's going on with the oscilloscope. The only problem is, of course, that it's not the capacitor size used on the lab sheet, so I am telling students to not follow part of the directions. Still, why are the directions setting up a circuit that blinks in the most common frequency rate for problems? Seriously, why. Why are they so sure no one who'd have a problem is in the class? (Or, you know, teaching the class. Disabled teachers exist and all.)

Now, here's the bit where being a teacher and being around good folks is helpful: the students listen. I'm not sure how so many people don't realize that flashing lights can be an issue (and I don't blame the students at all for, well, following directions) but no one is arguing with me when I point out that the flashing lights can be a problem for people, including for me. They turn the power off, or they switch off the capacitor. They ask, "Is that a common issue?" and I say "More common than you'd think with how many things flash in that range..." Who knows? They might even remember that flashing lights can cause problems.






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It's not just teachable skills

Sometimes (like, oh, yesterday and today) I see people talking about supported housing programs or transition housing programs (I think the difference is that transition ones are supposed to be short-term, though depending on how they decide when to move someone on, that might not work out.) And usually, if it's neurotypical people wanting to create programs to help autistic people, there's a big focus on teaching certain "independent living skills."

That means they want to teach things like:

• How to safely use a stove (don't burn down the house)
• How to effectively use a stove (actually make the food)
• How to use the oven
• How to use a microwave
• How to do dishes
• How to order take-out/delivery (unclear if this is over the phone or online)
• How to do laundry
• How to make a bed
• How to make a phone call
• How to clean the bathroom (because all the pieces in one go is apparently a single task??)

I know how to do all these things. I really do. A program that's aiming to teach me these skills may or may not reflect that, because no, I am not going to interact with people all day and still make myself dinner or make a phone call to order delivery, and my ordering delivery online is iffy too. With the meal plan I have at university, I can (and often do) go get the food and bring it back to my room where there are not people. However, if you can find a way to test only whether or not I know how to do the thing, not whether or not today is a day when I can actually do it after considering various other factors, you will find (as I already know) that I can do all these things. 

However:

This doesn't mean I can live "independently" (alone, without a meal plan, needing to cook all my own food and do all my own laundry, scheduling my own appointments, calling the people who don't take email and who I can't get to in person to make the appointment, and on and on. 

In fact, the closest to living "alone" I've ever gotten was an academic year abroad where I had a roommate, but there wasn't a meal plan and my friends were on another continent, meaning that they were not able to come help me. This did not go well. (It did not help even a little bit that I was extra stressed out by knowing the administration had tried to keep me from coming at all once they found out I was autistic and that they made a few attempts to have me sent home during the year. Seriously, that sort of "don't let them try because disaster!" is just about a self-fulfilling prophecy, because everything is harder when stressed.) The mess was made vaguely manageable because:

• When the roommate was making or getting food, she would usually ask if I wanted any/to come with. This meant that I would get at least that meal.
• My mother actually shipped me snacks that did not involve any kind of preparation. She also shipped me menstrual products after I discovered that none of the stores near me sold tampons. Only pads. 
• The program's academic advisor helped me put my half of the room into some semblance of order during our "academic" meetings more than once.
• The program's residence advisor would actually *bring me meals* when I hit the "can keep up with my academic work or keep myself fed but not both" times. 
• This was the *international* "dorms," which doubled as a hotel, and therefore someone else was cleaning the bathroom and changing the sheets when that needed to happen. (When I am dealing with my own linens, the wash point tends to be "I have bled on these in two different periods.")

Keep in mind that even with all of this, it was, in fact, still a mess. 

At college, I have a single room, a meal plan, and help keeping the room in some semblance of order+making clean clothing happen. This seems to be the bare minimum of support for "manageable."

And yes, learning how to handle the fact that I can't consistently make these things happen for myself is a thing. It's even a thing where a person who understands the actual problem might be able to help me with. (If you've suggested a life skills class, or if you've suggested anything involving a planner, I have already concluded that you do not understand the actual problem and have discarded your advice as so much noise.)  However, some skill that you can teach me so that I can then proceed to consistently make these things happen for myself is not a thing. 

There are skills I consistently retain, pretty much regardless of my physical or emotional condition. I can (and have) participated in mathematics competitions and done well while sleep deprived from a night in the ER and nursing a focally fractured shin, as well as while coughing my lungs out between rounds. I probably shouldn't have been in school either of those days, if I'm honest. I knew full well I wasn't safe to ride my bike to school (and therefore walked... on said fractured shin) in the first case. But I did, and I was still fine with the mathematics. 

There are other skills that can give out on me for many reasons, not all of which I even know. Speech is one of them. I lose speech pretty regularly, and I still go to class (and do math) while speech isn't working because math is sturdier than speech. All of the skills they talk about teaching as "independent living skills" are of this type. I know how to talk. Sometimes I can't. I know how to cook. Sometimes I can't. Heck, there are times when making use of my meal plan pushes my limits. I remember one day where lunch was Thai chicken wraps. I wasn't that hungry, so I only wanted half a wrap. I stood in front of the table with the wraps on it for a good two minutes trying to figure out how to make this happen before "there are knives" occurred to me. If it takes me two minutes to think of getting a knife which is in my line of sight, I probably shouldn't be using that knife. Thankfully, I was having lunch with a professor that day (no, really, his stopping by my office is probably also why I made it to the dining room at all that day.) He cut a wrap in two pieces. I took a piece. From there I was able to get a cup of liquid and a napkin, and make it to the table. Acquiring and consuming food is not easier for me than graduate math classes. 

If I need to make my own food, it's even harder. Here's an approximate list of the steps involved if I want to make ramen in the microwave at university.

• Notice that I am hungry.
• Stop doing whatever I was doing before.
• Stand up.
• Do I want tea too? Where is my tea jar? Where is a chopstick to stir the tea with? Is there still tea in the tea jar?
• Pick up the tea jar.
• Take the tea jar to the bathroom.
• Dump the remaining cold tea into the sink.
• Turn the sink on.
• Put the jar under the sink.
• Turn the sink off.
• Empty the jar into the sink again.
• Go back to my room.
• Remember that I want ramen.
• Grab a thing of ramen. (Do I still have the tea jar and the chopstick?)
• Go down the stairs.
• Do I want chicken in my ramen?
• Take chicken out of the fridge. (actually several steps)
• Dump chicken from bag to bowl.
• Put chicken in microwave. (again several steps)
• Set microwave for one minute.
• Grab two tea bags.
• Unwrap the tea bags.
• Put the tea bags in the jar.
• Fill the jar with boiling water. (Thank blob we have a machine that dispenses boiling water.)
• Open the ramen package.
• Remove the two small bags from the ramen package.
• Empty the vegetable bag into the ramen container. (Do... something with the spices bag.)
• Fill the ramen container with boiling water.
• Carry the container full of boiling water to the microwave (don't spill!)
• Put the ramen in the microwave.
• Take the chicken out of the microwave if applicable.
• Set the microwave for four minutes.
• Add sugar to tea. 
• Stir tea with chopstick.
• Add whole milk to tea.
• Do something for the remainder of the four minutes. Could be fall over on the couch in the room that has the microwave and fridge. Let's go with that because it means I'm still in the room when the timer goes off and this is long already.
• Pull the ramen out of the microwave. Hot hot hot!
• Carry ramen, tea, bag of spices, and possibly chicken upstairs.
• Add spices+additional cayenne to ramen.
• Mix ramen (more chopsticks.)
• Add chicken to ramen, if applicable.
• Mix ramen again.

And now, finally, I have ramen and tea. Realize that some of these steps could be broken down further. None of these steps are automatic for me. I can (and have) forgotten what I was doing and wandered off between any two of these. When I need to boil the water myself, I forget that I have boiled water for long enough that I need to boil it again an average of three times before I actually manage to make myself tea or ramen. 

So the thing I actually need, often, is someone who can remind me (but only at the actual time I need to do the thing, ahead of time is worse than useless) about a thing I need to do, possibly walk me through steps (and not in a "this is how you do the thing" way, because I actually do know how to do the thing and being condescended to will only make me mad), and in some cases, just make the thing happen for me because seriously this is not happening right now. Are any of those the skills they're going to teach me? No, because they aren't actually skills. 

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National Coming Out Day

I live in the USA, so it's national coming out day for me, today.

The short version: I'm queer.

Slightly longer version: I'm nonbinary, genderfluid, gendervague, bi/panromantic, and repulsed asexual.

Longest version (thus far): If you ask me whether I'm a man or a woman, my answer is "no."  The genders I vary around  are agender, androgyne, and "no, really, autism is my gender." That means that my neurodivergence is pretty thoroughly intertwined with how I (often don't) do gender. Since I am not a man or a woman and clothing tends to be marketed to one of those two genders, either everything is drag for me or nothing is. I go with everything. There are a few different pronoun sets I'm good with. Describing myself, I'll use they/them/theirs or sie/sier/siers. In text I go either way, in speech it's they because sie sounds too much like she for my taste. Xe, ze, and other sets created to be gender-neutral are all fine with me too. I will be amused by he/him/his because that's not the assumption people usually make. I tolerate she/her/hers from people I'm not out to. I do not tolerate "it."

When I do crushes or romantic attraction, the gender of the person is something I am aware of, but it's not particularly relevant. I have liked nonbinary people. There are too many different ways of defining biromantic and panromantic, and too many often conflicting explanations of the difference, for me to tell you with any certainty that I am one and not the other. I'm fine being described by either. I don't do sexual attraction, at all. Or libido, for that matter. Disabled people as a whole cover the full range of human sexuality, and I sit at the "no thanks" part of that range.

You can trace my journey, or pieces of it, along with more academic musings that relate to queerness, on my Queer Stuff tag, generally from less firm on my queerness (mostly I don't want to have sex) to stronger blatant statements (I'm repulsed asexual.)

Now, I'm fairly safe being out. (And there's not much in this post that you couldn't pick up on from having read other stuff on my blog anyways.) And I have a policy of being pretty out when it's safe for me to do so, to hopefully make it safer for others to be out in the future. Which wouldn't be necessary if I thought it was currently safe for everyone. It's not. I know it's not. Shout out to everyone who can't be out, who weighs the costs and benefits of being out and decides the closet is safer. You matter. Protecting yourself matters.




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#AAC and the day taught lab without speech

After just over two years teaching, it finally happened. I had to teach, and speech wasn't working. This is for a lab class, introduction to digital circuits, and for the sections I work, there's three of us in the room. There's the professor who is generally in charge of lab for the class, and there are two teaching assistants. I'm one of the assistants. So I'm not alone in charge of the room anymore, though I am still one of the people in charge. People tend to assume that the folks in charge can communicate via mouth sounds, and I usually can ... but not always. I've usually been able to plan so that speech is working when I teach, tutor, or present ... but not always. This was the first time it happened as a face to face teacher.

Now, I'd thought of quite a few ways to handle this ahead of time. For me, competence at anything has to include competence at doing the thing while speech isn't working, and this is now my third year teaching face to face. It's a lab now, and it was a lecture before, but the general idea is similar. I need to be prepared for speech to give out while I'm teaching, because if I keep teaching long enough, eventually I will need to teach while speech isn't working.

I thought I could write on a white board. In some classrooms, I probably could. It didn't work out in the lab. There's one white board, and it's not near the lab counters that people are working at. Helping a student with their set-up while running back and forth to the white board every time I need to say something isn't practical. Since I'd been in the classroom before and noted where the white board was, I wasn't completely shocked when this didn't work and did have more back-ups, but the white board marker has been my go-to for a while. The white board, after all, is my most used communication board. 

I thought I could carry my iPad and use one of my communication apps on it. In some classrooms, I probably could. I think this would work fine in a lecture style class, since lots of teachers use iPads and projectors nowadays. It wasn't practical in my lab class, because the iPad is frankly ... too big. Space is at a premium at the lab benches, and my iPad doesn't fit in my pockets.

I had no illusion that my laptop would be the answer in the lab. Typing into a word document and projecting my screen to the front of the room is something I've done before -- it's what I did when I presented at Autcom without speech, and it works fine when there's a projector I can hook my laptop to and I can be at my laptop. That doesn't work when I need to move around a lab where even the iPad is a bit big for my purposes.

Which brings me to pen and paper. It's a writing solution, just like the white board marker is, but it's a bit more portable because paper is smaller than a white board. I use blank 4"x6" index cards to print my reading notes, because a note card system similar to the one I was taught in high school works well for me, except for the part where my handwriting is terrible and will eventually make my hand hurt. Still, if I slow down enough it can be read, and that makes it a viable communication option when typing might not be.

So I put a pack of index cards in one pocket along with a pen, and that was my communication solution. If a student had a question that required a linguistic answer, I pulled out an index card and wrote on it. I then left the index card with the student when I went on to help the next person, which meant they didn't need to remember my answer. They could go back and read it again if they needed to. This seemed to work quite well, overall. There were a couple students who thought they could skim my answers instead of reading every word of them (seriously, these answers were 1-2 sentences, read the whole thing) and then got told by one of the other instructors to fix the problem that I'd just told them about, which was a bit awkward. (I underlined the relevant words from my original answer and waved the card at them at the same time that the other teacher started telling them about the problem with mouth-sounds.)

Other moments from the class:

• One student asked if I'd lost my voice. I wrote, "Approximately." She said that sucked. "Not really." But ... "It's my normal. I'm not concerned." That's so sad! [I point back to "Not really."]
  *Sigh* She was definitely following my lead on the assumption that I could teach while not speaking, but seemed to have some trouble with the idea that my being disabled and prepared to teach while disabled was not sad or needing pity.
• The teacher who runs all the lab sections for the whole course asked me if I was OK. "Yeah, I'm fine. I'm autistic and sometimes speech doesn't work." She circles "autistic" and says she'll need to look that word up. I turn the card over and start writing 自闭症 on the other side. She goes "Oh!" Sometimes the fact that I read, write, understand, and sometimes speak Mandarin Chinese comes in handy. She doesn't seem particularly concerned by the fact that I just disclosed a developmental disability that has lots of bewareness campaigns around it, and she does realize that I'm working with students and successfully helping them while speech isn't working. 

So that was that. For something I spent two years being worried about (and being prepared for) this was rather ... anticlimactic. I'm not surprised, really, but it is a relief that it finally happened and now I know from experience that losing speech in the classroom as a teacher is not a big deal. Students were fine, fellow teacher type people were fine, nothing is exploding, metaphorically. Literally... a few LED bulbs blew, but not based on my advice!

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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