Distraction or DDOS?

Heads up that this is about the current US government, including the POTUS. Meaning: Everything is a mess.

Every time that several bad things are happening at once, call them R through Z, I see comments like this:

• Don't worry about X, it's just a distraction (from Y)!
• Z isn't a real threat, it's just a distraction (from R).
• They want you focused on S instead of all the other stuff, don't fall for it!

Here's the problem: all of R through Z are legitimately bad. Every single one of them. They might not affect you personally, but they are all bad. Some are foreign policy disasters. Some are complete failures of how our government is "supposed" to work, and not in ways that would help marginalized folks. (A massive change in how policing is handled could be great. Encouraging brutality in arrests is not the massive change that could be great. It's taking the status quo and making it even worse.) Some are fairly blatant attacks on one group or another. (Taking Medicaid apart will get disabled people killed or institutionalized. See also: why ADAPT has been protesting at pretty much all things healthcare.)

These aren't distractions. To borrow a term from the Internet we rely so heavily on, it's a dedicated denial of service attack (DDOS). The idea behind DDOS is that a person or group sends so many requests to a server at once that the server crashes and loses most or all of the requests, making whatever site it's supposed to host unusable. Think of all the bad things happening as requests - you want to do things about them, hopefully. Think of yourself as the server - you have a limited capacity to handle requests, or a limited capacity for issues to take action about. If you try to take action on all of them, you'll get overloaded and quite possibly handle none.

That's precisely the idea behind DDOS. Overwhelm the server (you, in this metaphor) and they can't do anything. For actual servers, there are a variety of ways to handle it but no perfect solutions, because a server that can't respond to requests for information isn't much of a server at all. For us, any one person clearly can't pay attention to every single issue. This isn't a call for you to focus on more things at a time. (That sounds like a bit of a contradiction, since to focus you generally need to narrow things down.) 

So: you can't focus on every single issue at once. You still need to focus on a few issues, or even just one. That's fine. The difference between understanding all the bad things happening that aren't your personal focus as distractions and understanding them as part of a DDOS attack is what happens when you encounter another person who is focused on a different set of a few issues. If those issues are distractions, their focus is a problem. If those issues are part of a DDOS attack, their focus is great. You want to know that other people are covering these other issues! Splitting up the issues between different groups of people so that everything gets covered even though you don't cover everything is the best way we have of responding if all the issues are real.

And what about things like foreign connections and the whole Russia mess that we know Trump doesn't like to have talked about? Noticing what news tends to come with increases in the DDOS onslaught is still useful. That's the news that they really want to make sure gets lost because we're too overwhelmed to deal with it.

Alyssa Reads: Critical Studies of the Sexed Brain -- Communication thoughts

I continue my thoughts from reading Critical Studies of the Sexed Brain. Because I had more and then forgot to put them up here. Go me.  Here's the citation again if you want it:

Kraus, C. (2012). Critical studies of the sexed brain: A critique of what and for whom?. Neuroethics,5(3), pp. 247-259.doi:10.1007/s12152-011-9107-7  

And now the quote that got me thinking:

“Critical neuroscientists frame the question of a science gap between neuro- and social scientists, experts and the public, just as couple's guides conceive of the gender gap in terms of unawareness, misunderstanding, or ignorance, promoting the idea that all matters can be settled through enhanced communication and better knowledge of each other's distinctive language, culture, needs or concerns.”

This needs more attention paid to it. Here is a big issue: there is a power imbalance. Patriarchy is a word for the imbalance in the couple's guide, and it would relate to the sciences one too since hard sciences tend to be thought of as men's fields while social sciences are thought of more as women's fields. (Accuracy of this thinking is another issue, but STEM in general runs man-heavy.)

That contributes to the rhetorical positioning of the fields, where neuroscientific “facts” can't be questioned by social sciences, even if questioning the facts isn't exactly what's going on. Sometimes it's questioning the causes and interpretation of the reported result rather than questioning whether or not the result was correct, or reproducible. Though the fMRI study of a dead fish is relevant, and so is the fMRI of the same person daily for about a year – fMRI is not infallible, no more than any scientific procedure is, and pretending it is will get us into trouble.

The author then asks about “lay expertise” from patients, relatives, and activists. Since I'm studying neuroscience but came from the Neurodiversity Movement before I got into neuroscience, I wonder where that puts me. As a neuroscience student, I'm one of the science people. As an Autistic person, I'm somewhat a patient. (Not much of one, haven't been in therapy related to autistic traits for a while, but when I write as an Autistic person, I go in that category.) And there is definitely a power difference between the roles. There has to be, for Theory of Mind to have been interpreted to mean autistic people can't understand our own experiences. Not everyone making use of the word thinks that, but it's an interpretation I've seen way too much of.

The author then points to this framework as “preventative politics,” where it keeps the peace by avoiding/assuaging conflict in the name of interdisciplinarity. She argues this could prevent good science that would come from controversy. I'd agree, but also say that it can involve silencing of ideas that aren't status quo as part of the peacekeeping.

Another issue with the focus on communication is that it only works if everyone is acting in good faith. It's the same problem with Nonviolent Communication and similar: if everyone is acting in good faith, it works fine. If anyone involved is actually seeking to maintain control or to do harm, consciously or not, it's not going to work. If one person's goals actively exclude the other person's goals, better communication can lead to figuring this out, but not to solving the problem. Seeking to expand the domain of one's own field without worrying too much about the domain of anyone else's field could lead to a similar failure in interdisciplinary communication ideas.

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. 

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.)

No Boundary Thinking Seminar Reflection 1

This semester, I'm took a seminar on no-boundary thinking. Which sounds like a fancy word for what I often try to do as a vaguely disability studies like person: focusing on defining an issue and addressing it from any methods that work and not worrying about (often not knowing) what fields those definitions or methods come from. (To my professor from the seminar: Congratulations, you found my blog.)

So here's my first reflection post. Bracketed things were not in the original reflection that I turned in, and have been added since.

[So, at the start, we need to know what no-boundary thinking is. It's kind of what it sounds like: we're going to ignore the lines between disciplines as much as possible.] Huang et. al. (2013) discusses no-boundary thinking as thinking where problems are defined without being limited to a single discipline or group of disciplines, while the knowledge used to define and solve the problem can come from a variety of disciplines. Dr. Brian Dewsbury mentions that no-boundary thinking doesn't necessarily mean bringing more people on to a team just to have them – just because a given discipline has some bearing on a problem, that does not mean we must have a person who specializes in the discipline on the core team. If we did, teams could become overly large and difficult to coordinate, because many disciplines will have information that relates to any given problem. Stakeholders are brought up, and a fellow student says she is reminded of participatory research.

There are connections here: in participatory research, the idea is that affected communities 1) deserve a voice in discussions of problems that affect them, and 2) have useful information related to solving those problems. However, there is a risk of having people just to have them in participatory research – depending on when community members are included the research process, they may have little input in defining research questions, may be left out of data analysis and interpretation, and may generally find themselves used as a sign of community input rather than an actual source of expertise or information. [As opposed to how we should be defining and leading this thing. If anyone's job is "source of expertise for getting the thing done but not really deciding what needs to be done" it should be the outside academics studying the community.]

This problem in participatory research resembles a similar problem in interdisciplinary research, where the input from any given discipline is limited to where the people running the project think that discipline belongs, rather than appearing everywhere it could be helpful throughout the project time line. In both cases, the problem is with boundaries, whether between identities (academic, policy maker, or community member) or between disciplines. The problem is also with the assumption that people fit into exactly one of these boxes – a scholar on fisheries whose family depends on fishing does not fit into precisely one position. When I do research related to disability, I don't either. [I'm Disabled. I'm Autistic. I'm also legitimately a Disability Studies scholar, and I'm starting to be a researcher in assistive technology.] In both participatory and interdisciplinary research, the no boundary idea that we should be defining and approaching problems in ways that are “not limited by disciplines, traditions, vocabularies, or even technologies” (Huang et. al. 2013, p. 2) would be helpful.

Work Cited

Huang, X., Bruce, B., Buchan, A., Congdon, C. B., Cramer, C. L., Jennings, S. F., ... & Moore, J. H. (2013). No-boundary thinking inbioinformatics research. BioData mining, 6(1), 1.

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Alyssa Reads The US Book

On September 26, my copy of The US Book, by Michael Scott Monje Jr, arrived. I started reading. I know that's the day it arrived because her poetry immediately got me writing, which she says is one of the best compliments her book could get. I was happy, because the writing induced by (starting to) read this book broke through a bit of writers block. After writing a good bit in June (honestly mostly yelling at Uniquely Human, but I was making words) I dropped off a good bit in July, then only managed to write here once each in August and September. (To be fair, there was some other writing happening in August. There was not in September.)

So you can thank The US Book for my presence here again.

Image of a very happy looking Alyssa holding a copy of The US Book

Also, those of you who know my art style might recognize that cover, partially. I did that line art. 

Now to the actual reading bit:

The line that got me writing again was "Speaking is a prison when it's the only thing you're given." As a part time typist who can always, always tell you more typing than speaking, I represent that statement. It was always assumed that speech would work, because it appeared to, but written English is my natural language in a way spoken English isn't. 

I don't know what word to best describe my reaction to the call for psychology, as rhetoric, to make use of neuroscience. Something positive, and with perhaps some pride because neuroscience is the thing I am studying for my doctorate while writing about rhetoric, representation, and neurodivergence on another side. (I can't call one action the center and all others the sides, but I can say that there are many sides to what I do.) I have to agree that neuroscience has a ways to grow, and I'd like to be part of that growing because seriously folks, there are always assumptions and narratives built in to our science and at least I will admit to my neurodivergent ones. 

Face My Morning Face remains as important as it was the day it went up on her blog, if not more so. I'm thinking more so, because of what it's led to since then.

I'm as proud of Look for our communications if you want us to bother with your language. being dedicated to me now as I was the day it went up on her blog, if not more so. (The dedication is on the blog, not in the book. That's OK. I remember, plus it's on the Internet.)

And maybe, just maybe, the taste of those two pieces, which appear in The US Book but which are also still free online for you to read, will whet your appetite for the rest. I know I'm pretty blatantly saying you should read this, if you can, but that's because I think you should. The US Book made me think, laugh, and write. 

And of course, I'm studying neuroscience without leaving behind my knowledge as an Autistic activist and scholar of how we speak and write about things. Or my knowledge as a mathematician, for that matter. That's where I learned to poke holes in arguments, after all. While I work, I need to remember:

• Reading My Own Screams
  
  "Speaking is a prison when it's the only thing you're given." 'Nough said.
  
• Uses of the Knife
  
  I need this to remember about psychology as rhetoric + needing neuroscience. What I am studying is real, and it's important, and it's narrative too. Remember where the narrative comes from, because ... some of it's coming from the same people who hate us (It's time to accept that they hate you.) I don't get to be "apolitical" (as in protecting the status quo or as in not paying attention) without being self-loathing or self-sabotaging.
  
• Look for our communications if you want us to bother with your language.
  
  Communication barriers have more than one side and all too often, the side that's working hardest to translate their communications are also the ones who are called inherently incomprehensible.
  
  When I am tired and anxiety is telling me that nothing matters, I can remember that I have already had an impact. Not one measured in the metrics of academia, but one measured in people and poetry. I know which one matters more to me (and it's the one I've already got. Not gonna lie, though, I'm aiming for both.)
  
• It's time to accept that they hate you.
  
  Put so well, what I fight, why I fight, and remember that I am not alone. I'm not. 

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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"Locker room talk", "vulgarity", and sexual assault.

Heads up that I'll be talking about sexual assault. Most of the thoughts I'm expressing are things I've heard elsewhere, but not necessarily combined in the way I'm doing and I unfortunately don't remember my sources. Also note that my position on the Trumpster fire, though not stated on this blog before now as far as I know, has been "As a queer disabled Jew descended from Holocaust survivors, I am concerned by these patterns" for some time. Also part of my position is: "Knocking down one figurehead of these patterns doesn't undo them, but letting one such figurehead become the most visible figure of a country makes the patterns get much worse, very quickly."


I've seen quite a few articles floating around that talk about the Trumpster fire's latest comments as "vulgar," rather than as "bragging about sexual assault." Let's start off with thing the first: he's bragging about sexual assault. I've also heard about it getting defended as locker room talk, and typical of men. (Also something men will sometimes try to include queer women in, because apparently the fact that someone likes women means that they would go in for their objectification and the glorification of their assault?)

And I am, in fact, well aware that not all men would commit any sort of sexual assault. (I'm also aware that quite a few will admit to having done so as long as you only describe the act and don't call it what it is.) Want to know who doesn't realize that? The men who assault think that all men actually do so, and just avoid getting caught/in trouble for it. So when someone tells me that these sorts of statements are normal locker room talk, I have to come to one of two conclusions:

1. They're one of the ones who would (or has) assaulted.
2. They can't tell the difference between speaking about consensual acts in a vulgar way and speaking about assault in a vulgar way.
1. Or they don't care about that difference? That's not better though.

Similarly, when someone tells me that all men are like this in private, that all men will "take advantage" if they get you alone, or anything similar ... if it's not about the vulgarity, option 2 (or 2.1) isn't really there. I have to conclude that they have, or would, assault. They're telling me something about themselves -- if you claim every member of a group does X, and you're a member of that group, you claim to do X. That logic doesn't depend on what X is.

And if someone tells me this is normal, that all men speak like this in private, they don't get to turn around and claim that not all men are like this should I take precautions. They also get to cope if I take those precautions specifically about and around them -- see the logic in the last paragraph.

On another note, I've heard the idea that groping is "less serious," "not really assault," or "not a big deal." I can't speak personally to less vs. more serious, because groping is the only kind of assault I've experienced, and only once. ("Lucky" me. And the fact that this really is lucky is seriously messed up.) From a more general perspective, though, I'm fairly sure it's a bad idea to compare which kinds of assault are more or less traumatizing. It definitely is really assault. Our judicial system is similarly terrible about caring, and similarly tends to blame the victim if a report even happens, and it's really assault. It's a person touching or grabbing you in a sexual way, without consent. (I never reported mine. The study abroad program I was on at the time had been attempting to have me sent home related to my disability, and I sure as heck wasn't about to give them a safety issue as ammunition.) 

And then there's "not a big deal." It is, or it should be, but sometimes it doesn't get to be. People who've been through a lot of trauma sometimes ... adjust ... their ideas of what counts, or of how bad the things they've been through really are. It's not usually conscious, or intentional, but it's a thing that happens. I think it's part of our tendency to "norm" on our own experiences. (Another example of this sort of norming would be my reaction to being unable to speak. I pretty much don't care, it's just another day ending in -y. This is apparently unusual.) Growing accustomed to something in this way doesn't make it OK, if it's something that wasn't OK before. But it definitely means that things which are, in fact, a big deal don't always get to register as such. 

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Why don't you just make your own? WE'RE TRYING!

All too often, when people talk or write about representation in fiction, the responses we get are somewhere in the area of, "So write your own stories." We do! Getting them published and disseminated is the hard part, because mainstream publishers (and film companies, etc) in the USA and probably a good chunk of Europe too are of the opinion that the default person we can all relate to is the cisgender straight white vaguely Christian abled man. Any deviations from this supposed everyman occupy the difference slot. (You mean you have/are that too? Yes, that too.)

So we wind up crowdfunding our anthologies, or self-publishing, or making our own publishing companies, or one of any number of things, if we get our stories out at all. Autonomous Press exists. I have stories on Amazon. Kickstarter and Indiegogo often have crowdfunding going on for anthologies by and for marginalized folks. I'm actually thinking of, and supporting, one in particular as I write this post: Hidden Youth: Speculative Stories of Marginalized Youth has a Kickstarter active at the moment, with about a week left. I would love to see more people supporting it because I want to read the book. (I pledged for copies of both books, since this is the second in a series.)

I would also love to reach the point where stories about disabled people, people of color, queer people, women, and especially people who are more than one of the above are not shunted to the side with "write your own!" followed by "those stories don't sell," where we get these anthologies without needing to make Kickstarters and Indiegogos and found our own companies just to see ourselves in fiction. (I love the idea and reality of us having our own media companies and collectives. I do not love the idea that us having our own media companies and collectives is the only way we can get representation.)

But right now, crowdfunding is where we seem to be at. (Also Star Wars, since the leads for The Force Awakens are a white woman and a black man, and it grossed great. There isn't actually evidence for the idea that stories about anyone besides the supposed everyman don't sell. It's just a convenient lie for folks who are used to being represented and don't get why we're all up in arms about not getting stories where we're the heroes.) So if you want to get to read and watch these stories, please, do support them when you come across them and can do so. Hidden Youth: Speculative Stories of Marginalized Youth has about a week left on its Kickstarter and I want those books. 

Alyssa Reads Uniquely Human: Part 3

I'm now reading Chapter 2. The previous part (Chapter 1) is here, and the start of my reading Uniquely Human is here.

I think I've put my finger on one of the things that's been bugging me. Yes, we go on to (at least partially) reframe the ways the students Dr. Prizant describes are acting, but it's still a behaviorizing (or sometimes partially behaviorizing) portrayal. The behaviorizing portrayal is then followed by investigating motivations on some level, but we're still starting with the standard tropes.

It's part of the general theme I've been coming to, where this is better than most autism narratives (I haven't thrown the book at the wall!) but there's a lot of "has a good idea but doesn't quite follow through on it."

Another example is the big idea of not thinking of autism as a bunch of symptoms/deficits. Yes, this is a good idea. But then, re: echolalia:

In children who can speak it is often among the first indicators to parents that something is amiss in a child, when, instead of responding or initiating with the child's own language, the child echoes words or phrases borrowed from others. (37).

Reaction the first: Uh isn't that describing a symptom or deficit.
Reaction the next: I think original language is what's really meant, echolalia is our language for a lot of us... (see also my echolalic poetry, here, here, and here. Really want to argue the recombinations aren't my own language, even if the pieces are echoed?)

Parents apparently worry that echolalia will mark kids as... quirky. Yeah, I've got a complicated relationship with that word. (Comparative and deceptive) safety, erasure, "soft" disclosure, so many meanings behind that word.

I'm not sure why the part of trying to stop echolalia that is worse is the part where it's on the path to learning more "standard" communication (what I assume he means when he says learning to communicate and connect, since he's said in other spots that echolalia is communcation) as opposed to the part where it's silencing current communication (which he also points out as a problem.)

In this chapter I finally get to see advice from an adult on the spectrum cited as such, where he's learning from us as the experts he says we are rather than from (more humanized than by most clinicians) objects of study. The tendency has definitely been to treat us as subjects that he observes, which, yes there's useful stuff to be gained from observation but it took a while to get to the "actually using information you can get by asking us" for a book that calls us experts.

I really do approve of his pointing out that for none of the children that he worked with was echolalia actually meaningless. This is important! He studied this fairly heavily, it seems, and I would love to grab the citations because as much as echolalia as communication is one of those things autistic adults have been saying since ever, I don't know of too many clinical/academic citations to back it up. Finding that we use echolalia for all the same reasons and functions neurotypical folks use more "standard" language for is a handy thing to be able to cite.

However: If we're going to call echolalia part of language/a language, maybe we shouldn't call it a path to acquiring language, with no modifier on language? Echolalia really can be a path to acquiring non-echolalic or less-obviously-echolalic language, but 1) it's made of words and 2) serves the purposes of language so it's already language, so we should really note what kind of language it can be part of acquiring. I'd like to point you to the last three full paragraphs of "If you don't use your words you won't be indistinguishable" now. Really the whole thing but those last three paragraphs are what's most relevant to my points here: less-obviously-echolalic language is not the same thing as not-scripting or not-echolalic language. It's often a defense to make the echolalic nature less obvious, because folks will often assume the speech is meaningless if they know the speaker is autistic and they recognize that it's an echo/reference. (As opposed to neurotypicals apparently being clever when they make references?) Privileging language that you can't tell is echolalic, whether or not it really is, ties in to that same problem. Stop that.

Similarly, we don't take our "turn" in the coversation by merely echoing and "not really respond" (47). Remember that echolalia as studied and described here is 1) made of words and phrases and 2) serves the purposes of language so it's already langauge and is a response. That doesn't mean it's not useful to break long and complex sentences into smaller chunks. It is. Doing so gives us a larger library of phrases to work with and recombine, if nothing else (and it probably helps with understanding in ways that make recombination easier anyways.)

Then we get a story where Dr. Prizant asks a student why they do something. Yay, asking us. (So when I started reading Folk Psychological Narratives, which I swear I will eventually finish and then poke holes in the places where it doesn't follow it's own logic when applied to autism either.... the point is Hutto repeatedly emphasizes that the best way to get information on why a person acted as they did is to ask them. There are times where that could not work, but autism is not inherently an exception.)

In Justin's story, I think that there is some interesting framing of motivations, or some interesting motivations, even if the actions are good. Justin was getting nervous, and he was scripting (and the script was noticeable because it was not normative for the situation,) seemingly out of anxiety. So:

To replace this unusual greeting with a more conventional one, his parents prepared an index card with reminders of what to say in social situations. (49).

So we're doing this to replace the unusual greeting? Not to ... help with the anxiety? (Which could absolutely have a side effect of a more conventional greeting happening.) Interesting priorities there. If we're doing it because of the greeting, that really is trying to get rid of autistic behaviors because they're noticeably autistic. If we're doing it because in this case the script is a sign of anxiety, we're trying to help reduce a source of stress. Rather different goals.

Continue to Part 4 here.

Alyssa Reads Uniquely Human: Part 1

I'm reading Uniquely Human: A Different Way of Seeing Autism, by Dr. Barry M. Prizant, with Tom Fields-Meyer. I'm not entirely sure what the "with" means here -- did they write together? Did Tom edit for narrative, since telling narratives is apparently his thing? Dunno. I'd like to be able to like this book, since it's pointing out that trying to eliminate stuff we do just because it's autistic isn't a great idea, and since it was recommended to me.

Anyways, I know how my commentary tends to go, and I'm dividing this up. Part 1 is all the stuff that isn't in a chapter: cover, reviews that are printed in the book, book jacket, contents, authors notes, introductions, the index, that sort of thing.

The first thing I notice is that Temple Grandin loves his approach. That makes me suspect that the book is 1) going to be better than, say, Autism Speaks stuff, but 2) probably aspie elitist¹. 

On the book jacket: Everyone's using person-first language², and it's all children³ with, not people with. That's expected, but not a great sign. I know Michelle Dawson is good, but I'm not so familiar with Geraldine Dawson. Are they related? I don't know the Rabbi. I know Tony Attwood, and his appearance is not a good sign. Famous, claims to be an ally, and his comedy is full of jokes that really are at the expense of the autistic people in the room. Doesn't like having this pointed out. I'm not sure who Elaine Hall is, but I approve of her stating that the true experts are autistic people. I get very nervous seeing that she founded something called the Miracle Project and wrote a book about unlocking autism. 

Moving to the inside of the book jacket: We start with criticism of how autism is typically "portrayed as a checklist of deficits," which is a good sign because that's 1) typically what happens and 2) a big problem. The shift Dr. Prizant is suggesting, that we think of autistic behavior as coping methods for an overwhelming world, is not new but the idea of explaining some of what we do that way is reasonable. My isolation headphones, for example, are exactly that. 

The inside "advance praise" comes from some names I know and some I don't. The autistic people on that list are both white authors who run aspie elitist, and I still see the goal of "help" to "gain a greater social understanding," as in helping us learn to understand (and presumably imitate) how other folks social. Which is admittedly useful, but without helping other folks understand how we social too it's one-sided. I'm thinking back to "What would meeting you halfway be?" here. 

The table of contents doesn't have much that jumps out at me, though one chapter title does: The Real Experts. Since I totally just did the cover art and wrote a contribution for a book by the same name, I take a glance. Seems to be about actual autistic people/people with autism, which is good. I don't know the language preferences of the specific people so here's both just in case. (I also notice page counts: there are 12 chapters, and only 1 occupies fewer pages than The Real Experts. Hrm. If we're the real experts, wouldn't we get a bit more space?)

Looking at the author's note, I see that it addresses some of the language cues that made me nervous. He doesn't say why person-first language is his preference, just that it is. (Why?) That's not satisfying. The occasional reference to Aspergers I get. Given how publication schedules and writing work, he probably wrote a good chunk of the book (the draft submitted to the publisher?) before the distinction was dropped in the official release of DSM-5. But! The way he's using it lines up with an error that is a personal pet peeve of mine. Just because a person is tested as having average or higher cognitive and language ability does not mean their label was Aspergers under DSM-IV, or that it should have been⁴. *Waves hi.* Ding-dong, you are wrong.

In the introduction, Dr. Prizant expresses concern over the environment of fear and anxiety around autism, where parents are super scared. I'm glad to see that, because yeah the fear is a problem. Of course, he's not really saying anything about where this fear comes from. (Because doing so involves pointing at colleagues, at organizations where colleagues work, and at resources he suggests?) Also, when asking “which treatment will succeed?” can we also ask what success means?

I like many of his examples here: pointing out that everything he's seen an autistic person do, he's also seen neurotypicals do, if at a different age or under different circumstances is a move I approve of. (I also think it's important to get into the differences of when and why, but that's different from thinking similarities between autistic people and non-autistic people are irrelevant or shouldn't be discussed.)

I like the statement about learning from autistic people, though I have to question how “rare” the “ability to explain their own experience of having autism” really is. Is it that it's rare to be able to? Or is it that through experiences where professionals conclude our ways of being and acting are to be eliminated without concern for why, and through getting asked the same questions again and again from parents who want us to translate their children, treating us as resources rather than people, we learn not to explain this stuff. It's ignored because our supposed lack of theory of mind means we “can't understand what it's like to be ourselves,” and it's ignored because the parent really wanted to know how to get the kid to stop rather than what the purpose was, and it gets more repetitive than even we want to be. Remember that explaining why we did the thing the staff person didn't like can be taken as further noncompliance. Are you sure it's that we mostly can't?

I now turn to the back of the book. The resources guide looks like a mixed bag. A lot of the titles make me question the perspectives and goals of the authors – intervention “for autism” is rarely a good sign, for reasons that Dr. Prizant actually pointed out in his own introduction, please follow your own logic. Floortime is “gentler” but definitely about engaging with the kid in their way in order to try to draw them into engaging and acting in neurotypical ways. I would be shocked if anything with “unlocking autism” in the title is decent, and I know enough about the social thinking curriculum to run the other way, far and fast. Pointing to AAC resources is important⁵, though, and Paula Kluth writes good things, including You're going to love this kid. I follow PrAACtical AAC and they're mostly good.

Websites and organizations are again … interesting. Anyone who suggests Autism Speaks as a resource rather than as a group to avoid loses MAJOR points in my book⁶. If you're talking about the fear and anxiety around diagnosis in the same source where you suggest them, you lose points for inconsistency as well as for suggesting that organization. You don't get to have it both ways. Have you read the stuff they put out?? ASAN and GRASP are at least run by actually autistic people. Autcom has some autistic leadership but after parents who used to be board members wore badges indicated they still were while defending inaccessibility to autistic people, yeah, I don't trust them. Also Autism Society of America impeded an autistic attendee in contacting police after she was stabbed at their conference⁷. That's a thing that happened.

Without any explanation of what “meaningful progress” means, I can't speak to the SCERTS model. Maybe I'll see more about that in the chapters? I'm a bit nervous when social communication comes up.

Looking at the index now:

Huh. The names of autistic people I recognize look awfully white and middle to upper class. Also fairly aspie elitist, and none of them show up on that many pages. I wonder how much their ideas are actually getting used, then. Echolalia as communication gets quite a few pages. So does adults as a cause of emotional dysregulation. Trauma is mentioned. These seem like good things.

After reading the not-chapter things, my bet is on:

"Pulls decent to good ideas from autistic adults and repackages them to be palatable for a wider (parent-centric) audience, but chooses autistic adults who are white, middle to upper class, and usually aspie elitist. May or may not cite autistic sources properly, depending on how much he's really pulling from them. Also doesn't follow his own logic of re-interpreting things as not pathological as far as he could."

Part 2 here.

Footnotes!

1 When I say aspie elitism, I'm talking about something very like what Mel Baggs means by aspie supremacy, but without needing the claim that the “aspies” are better than the neurotypical people – it's just about the relationship based on perceived/assumed place within the autistic spectrum that isn't actually linear anyways.

2 This tells me Dr. Prizant is quite familiar with the parent and professional perspectives. In the authors note he says he understands and respects “why some adults with autism prefer the label 'autistic.'” Which, I appreciate the gesture, but no. Some autistic adults prefer the label autistic (and some adults with autism prefer the label “with autism,” this one isn't about language per se but respecting identity and choice.) As in, the ones who prefer the label “autistic” should be referred to as “autistic” even if you're going with person-first as your default. Here's hoping he got that right at the specific people level even though he missed it at the group level.

3 Treating disabled people, especially intellectually, developmentally, and cognitively disabled people, as forever-children is a big problem. So is acting like autism is some “new” thing that only affects children because of how new it is, as opposed to something where there are a ton of un- or mis-identified autistic adults running around … and a lot who didn't survive. He does point out in the authors note that things often apply to teens and adults as well, but why not just say "people" when that's the case?

4 Yes, I know people who had speech delays that made them ineligible for the Aspergers diagnosis who got that label anyways because they learned to speak before the evaluation happened. Back in 2012 I saw an Australian study that suggested fully half the people who'd gotten either the Aspergers or the PDD-NOS label actually qualified for “Autistic disorder,” which means their diagnosis was wrong – you weren't supposed to give either of those two when criteria for “Autistic disorder” were met. And a lot of these incorrect labels? Are because people falsely assume average or higher performance on IQ tests and language tests implies Aspergers. 1) This is a pet peeve and Dr. Prizant just hit it with his description of who'll get referred to with Aspergers. 2) If anyone knows the formal citation so I can point at it instead of just “I remember seeing” that would be great.

5 I use AAC part time, and sometimes write about doing so. Also, Typed Words, Loud Voices exists.

6 I've got a whole “Problem with Autism Speaks” tag on my blog for a reason, folks. Sam Harvey's masters thesis also discusses some … issues with their rhetoric and the results.

7 Link is to a picture of the scar. Check the description and the comments of the photo from the story.   

Age Appropriate

Age appropriate is one of those phrases I've got a complicated relationship with.

On the one hand, I'm an educator (I teach math both online and offline, working with students from about 4th grade through college. I've had 8-9 year old students and I've had students older than me. Plenty of expectations I have for my college students are not age appropriate for my 8-9 year old students. I'm not going to expect 8 and 9 (or really 10  or 11) year old students to sit in one place and focus for 90 minutes straight with little to no humor. (I don't think it's a great idea with the college students either, but I think they are more likely to be capable of it.)

Because of that, I think the concept of age appropriateness can be useful for defending children from unreasonable expectations.

On another hand, I'm Autistic, and I interact with other Autistic people. I know how "age appropriate" can be used as a weapon against us, and there are a couple ways this happens.

Way the first: The concept of age appropriate is used to control what we are "allowed" to show interest in. That is, when an autistic teen or adult shows interest in something aimed at younger children, we might get "redirected" to a more "age appropriate" interest, which is one more piece of the pattern where we're not really allowed to like things, at least not safely. (Other pieces of that pattern are having everything we admit to liking used as a reward for acting more neurotypical or taken away when we act autistic/do something the staff doesn't like.)

This can also go in the other direction, where a person is told they aren't old enough for whatever they're interested in. (I had a teacher who was very concerned that I had the math interest and ability to be using exponents and roots in first grade, and there were attempts by the school to get me to stop doing math that was too advanced to be "age appropriate." I don't think this direction (alone, at least) is as common as the other, but it exists.

Way the second: The concept of age appropriate is used to "show" that we have a "mental age" corresponding to whatever interest of ours has the youngest target audience. Here, the interest of the teen or adult in the (usually) "younger" topic is used as evidence against their competence. Rather than being a teen or adult with an interest (like how the graduate supervisor at the technology help desk really liked My Little Pony and was also known to be a graduate student who knew how to solve computer and internet problems), they are treated as children in a teen or adults body. It's a pretty gross concept. (Even if you're working with the tools typical of a younger person, you've got more experience working with them -- see this crayon art as an example!)

These two problems get combined as well. There are two steps here. First, an interest that's more common among younger people is used as evidence of "mental age." Then, this arbitrary mental age/developmental level is used to restrict what else the person is allowed to show interest in, or what else they are exposed to. An example of this would be a student who enjoys Blues Clues not getting access to the general curriculum for their age, because someone who likes Blues Clues must actually be on level with a pre-schoooler.  I use Blues Clues as my example because I liked the show well into middle school, and no that did not make me secretly a five year old in a middle schooler's body. This also gets used as justification for not providing education on sexual or reproductive topics, since an actual 3-5 year old shouldn't need to know that stuff yet.

The "ages" chosen for this purpose are arbitrary. Remember that interests have ranges of ages where they are more common, and remember that a person can have multiple interests, with different intended audiences between them -- whichever age is most convenient to use can probably be "justified" in this manner. Besides, "uneven" development, in comparison to the order skills and interests usually develop for neurotypical people, is pretty much a hallmark of autism. I haven't had a single coherent (neuronormative!) developmental level since I was about 6 months old, and I don't think that's unusual! That means we're essentially using a trait of autistic development, that we don't follow the same paths or patterns neurotypical people do, in order to show that we're actually small children. (Ever notice that they don't do this with the (neuronormatively) most advanced of our skills? Anyone argue I was really older because I could do more advanced mathematics? Nope!)

But back to something like the first hand, the idea of things being age appropriate or not can be used as a defense against unreasonable expectations for disabled kids, and as a defense against inappropriate therapies. For example, intensive behavioral intervention (IBI) and things based on applied behavioral analysis (ABA) often expect 40 hours a week of just the one therapy out of kids who are 2-5 years old. That's not age appropriate. Sometimes, pointing out that it's not age appropriate to expect any kid that young to manage such a schedule gets people to think about their expectations.

When I hear age appropriate in the context of autism or general disability, I don't expect that it's going to be used as a defense against ableism. Usually it's going to be the ableism (control of interests, evidence of mental age, and combinations of the two.) But I think it's important to remember that (and how) we can turn the concept around to defend ourselves from the ableist nonsense it usually justifies. 

神经多样性及跨文化交际 (Neurodiversity and Cross-Cultural Communication)

Written in April 2014 and then not published because ??? I think I wanted to work on this more but it's been sitting so here it is.

So I found out that on Wednesday a professor from Beijing's Foreign Language University is coming to talk to us about cross-cultural communication. And I just finished reading Thomas Orwen's thesis which suggests cross-cultural communication as a good approach for interactions between autistic people and allistic people (non-autistic people, though he uses "neurotypicals" for this meaning.) So I wrote a thing. Poke me and maybe I'll even remember to translate it into English.

人们一听到跨文化交际就会想到不同民族的跨文化交际，而不是只有民族才有文化区别。残疾人有残疾人文化（奚）。个别残疾也会有自己的文化，即聋文化（沈; Ladd），盲文化（French），聋盲文化（Saeed et al）,及自闭症者文化（Davidson; Robertson及Ne'eman）。每一种残疾人文化都有自己的特点：聋哑人有自己的语言，从语言对思想的深刻影响可以意识到手语在聋哑人文化的核心性。盲目人在沟通中注重非可视的信息。聋盲文化把聋文化及盲文化的一些特点混在一起，也有自己的特色。

自闭症者文化呢？自闭症者使用语言的方式跟神经正常的人使用语言的方式有区。我们的感觉统合及风格也跟神经正常的人有区别（Baggs）。这样的特征感知也不是自闭症者特有的区别：自闭症成年人提出的神经多样性(Singer)表明：公众对世界、自己的环境的感知不同，学习风格（思想风格）有很多种（胡)。自闭症者之间的沟通及特有的神经共同当自闭症者文化的来源，从文化的来源可以开始理解文化的特征（奚）。具体地谈，自闭症者的文化比神经正常支配性社会愿意接受重复行为，即扑棱手；也更愿意接受沟通的不同方式，即打字、选图片、和打说手语。而且，自闭症文化更注重认知通达性，为了提高通达性愿意把要求介绍的过具体和少用比喻或者介绍所有用上的比喻。面对面交流的时候，自闭症者注意：如果认识一个人，千万不应该把“肢体语言”的信息放在话的上面。这样的思路跟神经正常社会的思路差不多是反响的：人们说自己从别人的肢体语言意识到了谎话是平常发现的情况，而自闭症者没有说谎话的时候容易被这样认为。另外，在自闭症者文化里，话不一定有别的意思：“我现在不想跟你说话”没有“我不喜欢你”的意思。我们明白：对自闭症者来说，交流需要华很多能力，有时候不想跟别人说话。用目光接触没有的问题也不表明尊重情况：只有必着别人用目光接触才算是不尊重别人(Orwen; Davidson; Robertson及Ne'eman)。

在这样的背景下，容易问：跨文化交际的方式在神经正常的人跟神经岔开的人交流有没有效(Orwen)？至少，在神经多样性的问题上跨文化交际的思路值得考虑。

奚从清， 林清和， 沈赓方.残疾人社会学. 华夏出版社, 1993.

沈玉林. "论聋文化与聋教育."现代特殊教育1 (2002): 1-9.

胡壮麟. "从多元符号学到多元智能." 外语与翻译 14.4 (2008): 1-8.

Davidson, Joyce. "Autistic culture online: virtual communication and cultural expression on the spectrum." Social & Cultural Geography 9.7 (2008): 791-806.

French, Sally. "The wind gets in my way." Disability discourse (1999): 21-27.

Ladd, Paddy. Understanding deaf culture: In search of deafhood. Multilingual Matters, 2003.

Orwen, Thomas. "Autreat and Autscape: Informing and Challenging the Neurotypical Will and Ability to Include." Thesis. Bergen University College, 2013.

Robertson, Scott M.,及 Ari D. Ne'eman. "Autistic Acceptance, the College Campus, and Technology: Growth of Neurodiversity in Society and Academia."Disability Studies Quarterly 28.4 (2008).

Saeed, Shakeel R., Richard T. Ramsden, and Patrick R. Axon. "Cochlear implantation in the deaf-blind." Otology & Neurotology 19.6 (1998): 774-777.

Singer, Judy. Odd People In: The Birth of Community Amongst People On the "Autism Spectrum" Diss. University of Technology, 1998.

注释：神经多样性(neurodiversity)的思想里的两个单词词是我自己翻译的，不一定是完美的翻译：“神经正常（的）”(neurotypical)和“神经岔开（的）”(neurodivergent)。

自闭症者文化的一些内容也是从自己的经历而学的。

Representation, Freedom of Speech, and Patterns

Warning: suicide (mostly in fiction but with discussion of real life effects)

The example of the moment is Me Before You. It's yet another example of a movie where the disabled person is cured, dies, or is sent away (often institutionalized, see Rain Man) and this is part of a "happy" ending. In this case, we've got suicide because the quadriplegic guy doesn't want to be a burden on his girlfriend, and this is noble of him somehow.

(Seriously why is it noble for a disabled person to kill themself, but nondisabled people have so much to live for?)

I say example of the moment because there are a lot of movies where the disabled person dies and this is apparently a good thing, because they aren't suffering anymore. And the people around them? Despite any insistence they may have given at the time that the disabled person wasn't a burden... they are now free to do all kinds of things they would never have done before and apparently the person totally is being shown as having been a burden.

As in, story arcs of this type are a pattern.

When we point this out, we get told how this is "just a movie." (False, by the way: it's one movie in a pattern of fiction killing off its disabled characters. Not isolated.) We get told that the directors are free to make movies about whatever they want. (True. By the same token, we're free to tell the world that this type of arc is overdone, and that it reveals some problems when suicide is a happy ending...)

These are also patterns.

The free speech pattern applies to a whole lot of things. A person says something that is punching down. It gets pointed out. "But freedom of speech!" Yes. Freedom of speech. As Randall Munroe shared (but did not come up with -- he's not sure who did,) citing free speech is conceding that your best defense of what you just said is that it's not literally illegal to say it. Plus freedom of speech also means we can share our opinion that your speech was pretty bad.

People generally don't like having it pointed out that criticism is an expression of free speech. Again, patterns.

And here's the thing: the prevalence of fictional arcs of this type, where the disabled character dies (and ones where the character is cured, and the ones where the character is sent away) are super common. If disabled activists were actually censoring this sort of story, don't you think there'd be fewer of them around?

And yes, folks responding to "so this really common trope is pretty terrible" with cries of censorship, even though the prevalence of the trope suggests that it is clearly not being censored, is also a pattern.

Multicultural Psychology Post on Health (care) Disparities

This was a discussion board post for my Multicultural Psychology class. The topic was culture and health, and the chapter focused pretty heavily on health disparities and health care disparities. We're supposed to write at least 600 words and cite at least 5 research sources outside the textbook per discussion, though I usually (as here) will be making at least one of those citations in my responses to other students. (So, uh, professor? If you do a plagiarism check, yes I am the math TA in your class. Congratulations on finding my blog.)

Chapter 8 discussed culture and health. Part of the chapter is on health (care) disparities. Health disparities are the different rates of being healthy or sick (or having specific conditions) between groups, while health care disparities are the differences in treatment and in access to treatment (Mio, Barker, & Tumambing 2012). These two disparities can not be reasonably separated, as receiving poor care (or no care) can lead people to try to deal with health problems on their own and mistrust doctors, which in turn rather definitively leads to not accessing health care. I know that past healthcare experiences have influenced my decisions to (not) seek care for illness or injury. After I had a doctor explain that my injury (which I had already said was a month prior) could not be a broken foot because for a broken foot to appear as it did on the MRI, the injury would need to be about a month old, my trust definitely decreased. It was, in fact, a broken foot. I suspect he couldn't believe a person would be able to walk on a broken foot for a month. Another doctor taking my inability to assign a number to my pain to mean I wasn't in pain decreased my trust further. The only pain scale I've ever found that I could comprehend is based on behavioral cues, and since I'm fairly sure walking on a broken foot isn't supposed to be 2/10 on any pain scale, I can't exactly use that scale at the doctor's office. There are many who believe that autistic people have a reduced sensitivity to pain or don't feel pain as well, which really doesn't help when I'm trying to seek treatment for issues where pain is a symptom. Fitting that particular stereotype only makes getting medical treatment harder (Allely 2013), and I expect the experience is similar for other groups who are often assumed to feel less pain.

Mio et. al. give multiple examples of people of color receiving care later or receiving less treatment than white people in the chapter, both in personal stories and in statistics (2012). Racism has historically played a role in treatment, and knowledge of this racism plays a role in the decision to seek care or not (Bhopal 1998). Similar forces are in play for people living in poverty, who may choose to delay care due to an inability to pay for it or wait until they are in need of the emergency room because the ER (theoretically) can not turn them away entirely. Interestingly, decreased utilization of healthcare by those of lower socioeconomic status holds even when they have health insurance (Fiscella, Franks, Gold, & Clancy 2000).

In terms of the choice to attempt access to health care or not to make the attempt, historical and current racism play a significant role for many people of color. Medical and scientific racism, such as that which was partially involved in eugenics and in experiments like the Tuskegee syphilis study, led to continuing mistrust of the medical system. In addition, research on health care disparities has often framed the problem as lying within cultural choices of the marginalized group, which does little to create trust (Bhopal 1998).

In connection to these issues, I look back at the concept of imposed etics: “imposition of an outsider's worldview on a different culture” (Mio, Barker, & Tumambing 2012, p. 64). There really are differences in (attempted and successful) health care utilization between marginalized groups and privileged groups. However, in assuming this is because marginalized people culturally don't care about their health or don't believe that modern medicine can be effective at what it claims it can do, researchers are imposing their worldview and ideas of what reasons for action make sense on members of other cultures who have other worldviews! I know that as an Autistic person, I absolutely care about my health, including my mental health. I also totally believe the analysis suggesting that autistic people who are referred to interventions earlier and who received applied behavioral analysis are more likely to achieve the “optimal outcome” of losing their diagnosis (Orinstein et. al. 2014). I just don't care. No amount of evidence that an intervention can “help” me achieve a goal I don't have and rather explicitly reject is going to convince me to pursue that intervention, because it isn't evidence that the intervention can help me reach goals I do have. In fact, the imposed etic where outsiders presume my ideal outcome for mental health care is to stop being autistic, or at least act less autistic, contributes to my reluctance to pursue any mental health care. Even therapy meant for issues comparatively unrelated to autism gets sidetracked by this assumption, and also by assumptions about what it means to be mentally healthy that may not apply given that my natural cognitive styles are, by definition, not standard.

References

Allely, C. S. (2013). Pain sensitivity and observer perception of pain in individuals with autistic spectrum disorder. The Scientific World Journal, 2013(2013), 1-20.

Bhopal, R. (1998). Spectre of racism in health and health care: lessons from history and the United States. British Medical Journal, 316(7149), 1970-1973.

Fiscella, K., Franks, P., Gold, M. R., & Clancy, C. M. (2000). Inequality in quality: addressing socioeconomic, racial, and ethnic disparities in health care. Jama, 283(19), 2579-2584.

Mio, J. S., Barker, L. A., & Tumambing, J. S. (2012). Multicultural psychology: Understanding Our Diverse Communities (3rd ed.) New York, NY: McGraw-Hill.

Orinstein, A. J., Helt, M., Troyb, E., Tyson, K. E., Barton, M. L., Eigsti, I. M., ... & Fein, D. A. (2014). Intervention for optimal outcome in children and adolescents with a history of autism. Journal of developmental and behavioral pediatrics: JDBP, 35(4), 247-256.