Note For Anyone Writing About Me

Guide to Writing About Me

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

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

Citing My Posts

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

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

Friday, March 31, 2017

Alyssa reads: Ethical Analysis of Neuroimaging in Alzheimers Disease

Anyone else bothered by the consistent framing where we demonstrate the significance of disability related research by citing a significant/increasing “public health burden” and the money spent on care? Anyone? (Fellow citizens, that is your money too.)

Now we're going to focus on ethical issues around imaging/detection. (Which, I note, remain ethical issues surrounding imaging/detection whether or not you talk about public health burden and money!!!)

The “Roles for current imaging capabilities” section seems to take it as a given that identifying risk factors (for this thing we really can't treat that well) in order to predict who's going to get Alzheimer’s before they get it is important. I would have expected that to be one of the ethical issues to discuss: do we identify folks who are going to develop Alzheimer’s even though there's not really a way to change this? (And that's at the 100% certainty level, which, to be clear, is not current reality. We can't predict who will/won't experience this. We can't predict what cognitive changes a person will (or won't) experience as they age with anywhere near that level of certainty.)

(Yes, I think with something that would fall under the neurodiversity paradigm. Also cognitive liberty or freedom – people being in charge of their own minds while also valuing diversity on a societal level! I'm still inclined to treat neurological things that will eventually kill you as things I would like us to know how to change or prevent, because death. And Alzheimer’s will eventually kill you. Cognitive freedom also goes with “people can choose what to do with their own minds” and “not dying of dementia” is a common preference, let us science so people can make that choice.)

Ah, yes, good, stigma is getting addressed.
  • Predictive imaging may expand the pool of disease to people who are much younger, and therefore expand the pool that is stigmatized.
  • Both earlier prediction and stigma have the potential to reduce quality of life, including autonomy and the privilege to drive, and other daily functions.
  • There may be medical discrimination against people at risk, for example, with respect to eligibility for organ transplantation. (4)

My preference is for not stigma at all. Expanding the stigmatized pool is not doing this. Neither is reducing it. Both of those are justmoving the line of acceptable minds around. Nope. (Still don't like shoving people unwittingly or unwillingly into a stigmatized population.)

It's important to point out the quality of life issues where being in a stigmatized group, all on its own, causes problems. Because it does.
Organ transplant discrimination is a thing. I might not be able to get an organ (autism, people get rejected for that all the time, sometimes even when there's a family member willing to donate who isn't offering this for anyone else re: kidney or liver.) 
I think we need to work on the stigma in addition to working with the reality that it currently exists.

I appreciate that “Scan everyone who wants a scan” is one of the considered options. It gets the shortest discussion (probably because “do for person X what person X wants” isn't that complicated) and the issues brought up there are common to the other groups as well. (Who should have access to the results of testing is not only a question when the test was done without medical indication. It might have different answers depending on the level of medical indication for the test. I'm very much inclined towards “The person who had the test decides who even knows the test took place, and similarly who gets results.” It's hard to coerce test results out of someone if you don't know there's anything to coerce. The tricky thing is to make sure employers can't coerce the test itself.) Unequal access remains an issue, but let's not pretend it's a non-issue for any of the other options.

I'm betting the impact of results on personal liberty and similar closely resemble the impacts of other known cognitive disabilities. Just a hunch.

OH MY GOD. NO. “the greater predictive power combined with the growing number of people with AD might be the brick that breaks the back of the current health care system. (6)” NO. YOU DO NOT PUT THE BLAME FOR OUR MESSED UP SYSTEM EVENTUALLY BREAKING ON SICK OR DISABLED PEOPLE. NO. NO. NO. YOU. DO. NOT. DO. THIS. Go yell at insurance companies and congresspeople instead. NO. I hate you when you do this nonsense with autism and I hate you when you do it with AD and just generally hate it when you do this with the people who get screwed over by the current system that really, really wants everyone to be abled and to get briefly and treatably sick in ways that follow the textbook. And you know, this idea that we're a burden on some system always, always gets used to justify measures that reduce our personal liberties. When you write things like this, you are part of the stigma problem. Stop it.

(Try instead “The current health care system is designed for XYZ and not ABC. Given ABC, changes are needed.”)

The incidental findings question. Yes, protocols being decided on for these before the imaging. (Ulysses contract connection?)

Much remains to be learned about functional anomalities.” (8). Well. Yes. We only seem to study this stuff when there's a perceived deficit. If it's worked for the person their whole life, why would we have noticed anything? [Hi, Galton the eugenicist deciding not totake issue with the lack of a minds eye because it seemed most commonin “men of science.” We're biased as heck about what unusual things we decide are problems and what unusual things we decide to study like the people who have them are objects.]

Wednesday, March 29, 2017

What do you mean by severity?

A question I found on Quora (then answered, but the answer here is longer):
Do people with autism have an understanding of their own condition? If so, why does it not lessen the severity of it?
Now, those of you who have been around my blog a while might know that I am an autistic person, not a person with autism, and that I have reasons for this. That's not quite the point of this question though, so it's not quite the point of my answer either. Poking some holes in the premise, on the other hand? Sure.

I'm autistic. I know I'm autistic. This was not always the case. I used to know I was weird but not that autism was a label that could explain some of my weirdness. (Affinity for the absurd is also relevant.)

I know that, related to my being autistic, I am not always able to speak. Sometimes I can, but sometimes I can't. Knowing that I can't always talk doesn't magically make me always able to talk. (There would be a bit of a paradox if it did.)

However, knowing I can't always talk means I can plan around not always being able to talk. I carry alternative communication methods: pen and paper, text to speech software on my laptop, a whiteboard marker... it varies with the environment. But who looks more obviously disabled? Someone who happens not to be speaking or someone using text to speech because they can't speak? I am taking an action that mitigates an effect of my disability. This action also makes my disability more apparent. Am I more severe or less for doing so? Does the question even apply to my situation?

I also know some patterns about what activities or environments make it more likely that I will be unable to talk. That's a fairly thorough understanding of one piece of how I work, yes? Well, this knowledge means I can plan my activities in order to minimize the chance of speech giving out on me. (Or I can choose not to care, since I very rarely have a reason to care about speech per se. Access to one working communication method matters. That one method being speech usually doesn't. But let's assume, for the time being, that we're dealing with a circumstance where I would prefer to be able to speak.) This planning means I may choose to skip an activity or to leave an event early in the interest of maintaining my ability to speak. If I make this decision (and say why, if asked), does my non-presence for disability reasons make me more severe? Does maintaining my ability to speak make me less severe? Does the question even make sense in my situation?

On an entirely different note, I know sitting "properly" still is difficult for me. I could spend lots of energy doing so anyways (and probably not remember much of what I heard in class.) I could bring drawing or sewing with me. (It looks weird, but it's not obviously an autism thing. These take little enough attention that I'll retain more than I would trying to sit properly still, but enough that it's not perfect. It's often been my best option.) I could bring a fidget toy, marketed to neurodivergent people. Really, it's probably marketed to parents of neurodivergent kids but that's another issue. (I'm a bit more obvious now, especially if I'm also flapping and rocking. However, we've maximized my attention and retention.) So, the more visibly obvious my disability is, the more I'm getting done. When am I "more severe"? When am I "less severe"? What does this question even mean?

I get more obviously autistic (less "visibly high functioning", thanks Dani) when I order my life in ways that make it easier for me to get stuff done.
What do you mean by severity?

Oh, and btw, I totally have a Patreon. Support my tea habit?

Friday, March 17, 2017

Dear Well-Meaning Autism Mom Looking For A Surrogate Mom For Your Son, Please Don't Assume The Person You Approached Is A Girl Or Straight

Guest post by Elizabeth Rosenzweig. 

So I run an autism meetup. Parents of post-pubescent autistics are not invited. There’s a number of reasons why but one of them in particular has been making the blog rounds: well-meaning but misguided parents who, out of concern for their son’s (and it is always a son, isn’t it?) inability to fend for himself, look to set up a trust fund for him in the shape of a kindly woman savior who will cook and clean and pay his bills for him, forever and ever, amen. The guys themselves can be the problem, too; a person who should be a grown-ass man asks you out and is then shocked, SHOCKED, to discover that you’re just as shit at getting A Job, remembering to pay bills on time, and feeding/picking up after yourself as he is, if not worse. (I, uh, may or may not have very personal experience with that one.)

But I’ve already had two very smart friends I admire address that aspect in plenty of depth, so, well-meaning but misguided parent, let me address another one that you may not have considered.

That long-haired, girl-shaped, pretty, kind person you met, the one you think would look so cute on the arm of your precious manchild (or your precious self), might not actually be a girl. Or straight.
They could be asexual or aromantic - content and whole within themselves. They might be allosexual but gay. They might use she/her pronouns but feel utterly alienated from femininity as a concept. They might be a genderless android. They might be a trans man. You just don’t know!

It’s almost like that long-haired, girl-shaped, pretty, kind person is… hear me out for a second… a person. Not your personal insurance policy, or your uncompensated PCA, or your romantic-comedy-prize, or your glorified German Shepherd, but an entire human being unto themselves, with weaknesses and feelings and ambitions beyond saddling themselves to some cisgendered guy who wants things done just like his mom did them. *They* might be the one needing a PCA! They might maybe sometimes need someone to hold them while they cry hysterically because they foolishly expended all their energy for the day on folding three-quarters of the laundry. (I, uh, may or may not have very personal experience with that one too.)

How do I even address the sexual side of things with you? You, hypothetical mom, have almost certainly had experience with shutting up and taking it while a male partner got his rocks off inside you. Is that how you want your son treating his life companion? Is that how you would want to be treated? I’m certainly sick of it, or worse, being treated as deranged for exploding in frustration after having my own needs go unacknowledged and unmet for years at a time. I got so sick of it that I quit men and went monogamous with an assigned-female-at-birth genderless android. So far, so good. But how would you know that from looking, unless you saw me and my wife together? 

The point is, you don’t consider those things. You think about your own fears, which are visceral and immediate. What will become of my child after I’m gone? When will I have a chance to feel like a person and not a 24/7 PCA - won’t anyone please help me? And those questions resonate so loudly inside your own head that you don’t stop to ask yourself the ones I’ve posed here. That’s not my problem, though, nor is it the problem of any long-haired, girl-shaped, pretty, kind autistic. It’s not fair of you to put your anxieties on us, when we have so many of our own to contend with.

One of the side benefits of running an autism meetup is that you have the opportunity to meet a lot of people of all ages and genders and walks of life. I have quite a few lovely gentlemen who are regular attendees. Let me reassure you, dear, hypothetical mom, that almost all of them have turned out just fine, with the support of agents and agencies who are meant to do the work that you are looking for from that nice autistic at the meetup. It’s actually the ones whose parents have done the most coddling and interfering who are struggling the most.

So please. Stop putting your cissexist, heteronormative expectations on people you barely know, in the name of providing for your own offspring. You’ll start working on real solutions much faster once you do.

Wednesday, March 15, 2017

Please, autism researchers, study these.

Quite a bit of autism research is what I would call, to put it delicately (as in, I am neither screaming nor swearing at it), abled nonsense. I definitely needed to know that my asexuality as an autistic AFAB is a testosterone-related disorder. I also needed to know that I only think I'm trans (nonbinary to be specific) because autism is an extreme male brain. And it is of the utmost importance that I know I am incapable of humor in any form, but especially sarcasm. Autistic satire is definitely not a thing, right?

Oh, wait. All of that is abled nonsense. So is the idea that the optimal outcome is a loss of diagnosis, by the way. I'm most able to do the stuff I care about when I am visibly autistic rather than spending energy on not being so. Dani briefly achieved so-called indistinguishability, an older "optimal outcome" and it was not worth it. (Also I'm the friend.)

I would like to see research that is not abled nonsense. I especially would like to see more of this research being done by autistic people, because no, I don't think we need neurotypical people interpreting the results in order for them to be valid. I'm with Nick Walker here: when we depend on less-marginalized researchers to "discover" our hard-earned truths, we're reinforcing the idea that the knowledge we've figured out for ourselves as a community isn't valid. Which communities get to have valid knowledge?

That said, there are things I'd like to see researched more. Not necessarily in the current structure (because let me tell you, I expect someone like, oh, nearly any non-autistic autism researcher who presented at the Coalition on Autism and Sign Language where I threw myself into a wall repeatedly, to make a complete mess of the topic.) And preferably by autistic people with experiences relevant to the topic.

  1. Inconsistent speech and AAC support for autistic adults.

    I'm an adult. I can speak (usually.) When I can't speak, I use AAC. AAC research seems to be focused on two groups: adults with neurodegenerative disabilities, and young children. Autistic adults who can sometimes speak and sometimes not are neither of those categories, but there's a lot of us. This might be more common than "always has speech" is, among autistic adults, but thanks to behaviorist approaches and the assumption that "can sometimes" is identical to "can consistently" given a sufficiently strong motivator, professional types tend not to get this. I would like to see research on what supports, including AAC, tend to make communication easier/more effective for us.
  2.  Employment supports that are neither sheltered workshops nor "we think they're all good at technology" start-ups that might pay well but are still pretty segregated.

    Sheltered workshops can (and often do) pay below minimum wage. Autistic people, like all disabled people, are more likely to live in poverty than abled people. Are these facts connected? You bet! Programs like Specialisterne, on the other hand, are founded by (usually parents) based on a stereotypical idea of "autistic strengths" that usually means technology work. Or Microsoft has a program to hire autistic workers now. These can be useful, if you're an autistic person who wants to be working in technology. I worked an IT job for a while. It was a good experience in many ways. I also never want to do that again. I like writing. I like teaching. I like art. I've earned money on all these things (mostly teaching) and would happily continue to. These are not the specific jobs you're going to come up with if you're a non-autistic person trying to provide employment support for autistic people.

    So maybe, just maybe, we need to take a look at employment supports that are not limited to a specific kind of job. (Or, you know, look at more kinds of jobs? Because the needed supports will vary based on what kind of job it is.)
  3. Burnout.

    After reaching some ideal of indistinguishability and hanging out there for a little bit, or just after the demands get to be too much even if we were never indistinguishable, we can hit a breaking point. Then everything is way harder, we have way less energy, and our abilities shift. Sensory overload might be more of an issue. What can we do to make this less likely to happen? What supports would help a person going through this? People dealing with this have written about it, both during and after. Getting some idea of what tends to help us vs. what tends to make things worse would be great for anyone who deals with this in the future. Even better if we can help people not have this happen. Burnout is not fun.

Sunday, February 19, 2017

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:

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.)

Wednesday, February 15, 2017

Alyssa Reads Memory Blunting: Ethical Analysis -- Divergent Thoughts

I read "Memory Blunting: Ethical Analysis" by the President's Council on Bioethics, excerpted from Beyond Therapy: Biotechnology and the Pursuit of Happiness (2003) and appearing in Neuroethics: An Introduction with Readings, edited by Martha J. Farah. I did so because I am taking a neuroethics class and we're supposed to show that we're thinking about neuroethics stuff at least a bit outside class. Also because I'm super-interested in how neuro-stuff (especially neurodivergence but really all things neuro-) is represented in fiction (especially young adult speculative fiction.) I'm pretty much chucking my notes (drawn parallels, expressions of annoyance, and the occasional "OK that's legitimate") on my blog because as important as a lab notebook is, I like notes that are typed and searchable. This part is just the connections I've drawn to Allegiant. More later.

The council starts by asking when we would want to reduce the emotional impact of an experience, and why we should/shouldn't in a given situation. Definitely good questions to consider.

These questions remind me of the ending of Allegiant. We have the protagonists wiping the memories of everyone at a government agency in what boils down to self-defense -- the agency was going to do the same to their entire city "experiment." Not that the experiment was particularly experimental, nor was it particularly based on how genetics actually works, though it was certainly eugenic as all heck. So here we get memory wipe as government control over a eugenic project and as self-defense against said government control.

We also see individual level decisions about memory elimination: Four brings a vial to the city with the plan of using it on one of his parents, who are leading opposing factions in what has become a civil war. He believes that if one of them will stop, so will the fighting as a whole (and then maybe the government won't memory wipe the entire city.) He gives his mother a choice instead of using this vial (he doesn't like memory wipes as an act of war/control/defense/greater good) and this winds up working. She agrees to leave the city.
Or Peter: He is cruel. He knows it. He wants to change. He knows people are the product of their experiences and choices to enough of an extent that he'd have a hard time doing this (and therefore just ... wouldn't) without the aid of wiping his memories. He wants to forget himself. Interestingly, he's the only individual-level memory wipe that we see go through. He forgets himself. In the epilogue, we find out that he's still not the nicest of people, but he's not the person he was before, either. He did make a (slightly) different self, and the difference matters. (Things like not stabbing rivals in the eye while they sleep are just slightly important.)

Four/Tobias, again. After Tris dies, he takes a truck and goes into the city with a vial of the memory serum. His friend Christina stops him, because "The person you became with her is worth being. If you swallow that serum, you'll never be able to find your way back to him." And with eliminating the memory entirely of who he had been and what he had done, I even think I might buy this argument. I will, however, note that this would be a complete elimination of memory. This isn't blunting the emotional impact, making a thing you can remember be less traumatic to recall. This is making the event gone, like it never was, instead of softer, so you can look at it instead of needing to bury it. 
And why do I read and understand the neuroethical arguments in dystopian science fiction?

Maybe it’s something you have to be Autistic to see, but all of their storytelling is 
Every writer is making a narrow and overly specified claim about
the nature of social pressure, taboo, deviance policing, human fulfillment, and
the methods by which a person located in a certain sociological position might resolve
     the needs inherent in their system.
When I read, this is what I examine. A writer’s inability to fully represent society
is simply a way of stating their warrants to me, and the individual scenes carry
not only emotional value, but grounds for the conclusions drawn in the depiction
of the change in the main character’s state. All of your fiction is an argument about a
     time and place. (Monje 29)

That's why.

(That's also from The Us Book, which I read and which you should read. Specifically, it's from "Reintroducing Art to the House of Rhetoric.")

Monday, February 13, 2017

Jewish Protest Thoughts

So. Bannon is anti-Semetic. We know that. Threats and vandalism on Jewish community centers and synagogues are up. We also know that. Jewish folks may not be the primary targets (I'm thinking Muslim people are the big-name target of the moment what with the travel ban that is definitely a Muslim ban let us be real, though there are seriously a lot of targets) but swastikas are on display. Which means Jews are on the list.

A thought I am having, therefore:
Drown out Nazi and Neo-Nazi slogans with clearly Jewish sounds:

  • On Tumblr I saw a suggestion of the Shehechiyanu. Which I am probably transliterating terribly, because Hebrew. It's a prayer thanking God for your making it to this moment, used on the first night of many holidays and at Bar/Bat/Bnai Mitzvot.
  • Songs for holidays of the genre "They tried to destroy us. They failed. Let's eat." I'm thinking Hannukkah and Purim, especially. Bring your gregors and drown out Trump and Bannon's names with those, to be especially Purim-like. Maybe give out Hamentashun?
  • Really any song that's in Hebrew or Yiddish that it makes sense to perform at full bellow. 
You see, doing slightly silly things that really piss off the bad guys while making us laugh is a way of (hopefully) keeping morale up. And singing about how some schmuck who tried to have us killed was swinging from the gallows he had built for us, and now we're going to eat pastries? I think that fits the bill. (And nosh some Hamentashen!)

Thursday, February 9, 2017

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. 

Monday, February 6, 2017

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.

Monday, January 30, 2017


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.

Friday, January 20, 2017


In dishonor (on you, on your family, on your cow) of the Trumpster fire and his fanfare today, here is something I wrote in the wee hours of the morning on November 9. And remember it's easier to disobey an order that's coming from someone you hold in contempt than someone you respect.


In a country that just chose the open fascist,
Against immigrants, indigenous people, people of color, queer people, disabled people, Muslims, Jews, women,
Many of the above all at once,
(You know, the ones who built whatever greatness America could have laid claim to before)
A Queer Disabled Jew weaves steel rings together,
Preparing their literal armor,
Or their nerdy, LARP-friendly build of the weighted vest.
Take your pick. (It's both.)

Read the rhetoric of action, of movement.
This is a metaphor for protection,
Even more than it's literal.
They (I, this is me, I am the one weaving steel rings while I can't sleep at 3am)
I know full well today's threat is
not a sword or an axe, but guns,
or (tear) gas(lighting) as policies change,
killing slowly with the knowledge that help isn't coming.
Steel rings turn slices into bruises and breaks,
won't stop projectiles,
have no effect on deceptions or laws.
But armor is still armor and it's weight means something.
Yes, this is a metaphor.
It's also something that's happening.

Tuesday, January 10, 2017

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.)

Sunday, January 1, 2017

I'm moderating #USSAAChat: AAC and the workplace!

The US Society for Augmentative and Alternative Communication (USSAAC) runs a twitter chat on the second Thursday of each month, at 7pm EST. I'm moderating the next one, on January 12. The topic is going to be AAC and the workplace. This is important to me because I'm a teacher (sometimes TA) and I use AAC part time. I know many adults who use AAC, including at work.

I do plan to make a Storify of the chat afterwards. If you would like to participate but do not want to have your tweets included in the Storify, feel free to let me know. You can reach me on Twitter, or you can email me: alyhillary (@) gmail (.) com.

Here are the planned questions:

Q1: Let's start with introductions. Who are you? What is your relationship to #AAC (and the workplace)? #USSAAChat

Q2: What #AAC systems and supports are used in your workplace? (Including by the folks we don't usually think of as AAC users!) #USSAAChat

Q3: What do you consider when choosing #AAC systems to use at work? (vocabulary, grammar support, output methods, other things?) #USSAAChat

Q4: We all communicate in many ways. How do you combine communication methods (including speech) and supports in the workplace? #USSAAChat

Q5: If you could design #AAC systems to use at work, what would you want? (visuals, grammar options, customizability, others?) #USSAAChat

Q6: How could your workplace better support #AAC use? And what is already being done that supports AAC use? #USSAAChat

Q7: I know I missed things. What do you want to say or ask about #AAC in the workplace that I haven't asked about? #USSAAChat