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

Monday, May 30, 2016

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.

Tuesday, May 17, 2016

Between the Lines/Communication Theory and Practice

I think it's fairly common that people read "between the lines" as part of communication. Understanding that this is a thing which happens is definitely part of my skill set. Knowing what information people are pulling from words left unsaid . . .  not so much.

(Similarly, I don't usually get what folks are hoping I'll understand from between their lines.)

I'm not always sure how to handle this, because there are a few dimensions to this problem.

Piece the first: My communication style generally involves giving lots of information. If I know that a thing I want to do (even, and perhaps especially, if I'm excited about the thing, because then I'll have thought about it more) has some tricky bits, and you ask me about the thing, I am going to tell you lots. This includes telling you where I think the tricky bits are going to be. This does not mean I don't want to do the thing.

This is one of my communication quirks where I have some idea who is going to be confused, and how they are going to be confused: anyone from a culture where pointing out how something is "inconvenient" or similar is an (unspoken) no is going to think I'm saying no, I don't want to do the thing, when actually I'm probably working through how to do the thing. (Yes, this caused a lot of problems when I was in China.)

Dealing with the mismatch is a bit trickier than understanding it exists, though. I can give overall less information under some circumstances, but it's not going to work when I'm looking for advice (because then whoever I'm asking needs to have enough information to give helpful advice), when I'm tired (because then I tend to revert to my natural communication patterns), or when it's literally my job to provide information. Other people can learn how my communication actually works, but this is really only practical for people who interact with me frequently. (Ex: Most of the professors I've had for smaller classes have a good idea how my communication works, as do my teammates for frisbee an most of my classmates. However, the other instructors for the class I taught this semester, who I really only interacted with at instructors meetings, don't.)

Piece the second: Silence, or not responding, is taken as having meaning in face-to-face conversations, generally beyond "I'm still thinking about what you just said" or "I'm not actually capable of speech right now." What extra meanings there are depends a bit on the context, but even among people who know my ability to speak can give out, very few will guess that as a reason for silence. (One professor who I've had for five classes does. I think he's it, though.)

I'm not entirely sure how to deal with this one, either. The ways people react to me definitely change with the order that they get information in: as far as being considered competent goes, it's in my best interest to keep the fact that I lose speech sometimes private until it's relevant (meaning until speech actually gives out on me.) I don't always do that, because that's not my only concern and because there are other ways I can signal competence (plus when you're a graduate student it tends to be assumed.) So I can tell people that speech giving out is a thing that happens, and that it's not a big deal, and that if I'm not answering them verbally that's quite possibly what's going on. There are some risks involved in doing so, but I can do it. That doesn't mean it avoids the communication issues: plenty of people know I can't always speak. Most of them still attach the context-typical meanings to my silence, which means my disclosure isn't very effective.

Those are the pieces that are at the tips of my fingers right now, but there's definitely more. I still remember (and laugh about) the time that a friend of mine took "I'd love to but I'm not sure I can because I've got a presentation that afternoon" to mean "I don't want to join you for lunch [that afternoon when you're on campus]" and was therefore really confused when 1) the presentation got cancelled and 2) I still wanted to join him for lunch. Oops.

Thursday, April 28, 2016

Q is for Quirky

I originally wrote Q is for Quirky for the A-Z of Neurodiversity at Un-Boxed Brain. I definitely suggest the rest of the series!

I've got a really complicated relationship with the word "Quirky." I think many of us (neurodivergent people) do, and often for reasons that are ... also complicated, and often highly personal.

Thought the first: Quirky is true. I know you should never let the dictionary be your entire thoughts on a word, because there is connotation on top of denotation, and there are cultural (and subcultural) meanings that are not always captured. Dictionaries are written by people, and they generally reinforce whatever norms are already in place. That said, this first thought starts with the dictionary.

Oxford English Dictionary tells me that Quirky means:
Characterized by peculiar or unexpected traits.
Cambridge English Dictionary says:
 Unusual in an attractive or interesting way.
Merriam-Webster gives me:
 Different from the ordinary in a way that causes curiosity or suspicion.
Before questioning what traits are expected vs. unexpected, before questioning what ordinary is and isn't, before questioning how subjective these definitions really are, I have to admit it: By mainstream subjectivity, I'm all these things.

Thought the second: Question everything. Question the assumptions behind those definitions. What is peculiar? What is unexpected? What is expected? What kinds of differences do we think of as attractive or interesting? What kinds of differences lead to curiosity or suspicion? Why are those differences in particular attractive, interesting, curious, or suspicious? And why does one dictionary note only that the traits are atypical, while the other two give (slightly conflicting) information on how others react to those differences?

I don't have full answers to all those questions, by the way. I'd be interested to read what some of you think. (All of us together know more and speculate better than any one of us can alone.)

Thought the third: Just like the term "self-advocate," yes, "quirky" is true, but incomplete. It doesn't tell the whole story. (How often can one word tell the whole story?) Quirky doesn't tell you that I didn't figure out intentional disobediance was an option until a special education aide (not officially there for me, but still) told me so. Quirky doesn't tell you why we rock or flap or generally act as neurodivergent as we are.

Thought the fourth: Quirky is "safe." No one tells me "quiet hands" when I am just quirky (I have to partially quiet hands myself to continue to pass for merely quirky/weird, though.) No one tries to prevent me from going on a study abroad trip when I am just quirky. No administrators make multiple attempts to have me sent home from study abroad when I am just quirky, because "people like that shouldn't be in college."

Sometimes, being seen as purposefully weird is often safer or otherwise "better" than being unintentionally or involuntarily weird. Sometimes, we figure this out without even knowing we've figured it out, and so we get called on our (more) intentional weirdness rather than our (more) directly autistic traits. Sometimes this works. (Sometimes not.) It wasn't the main point, really, but Mel writes about this some in sier BADD post from a while back.

That's why I have typically let my students think I'm "just weird." I mean, weird (quirky) is a true statement, and it's a safer statement. (Isn't there a stereotype that college professors are eccentric? Ever wonder why that is?) If I'm going to spend 2.5 hours per week (either 3 meetings of 50 minutes or 2 meetings of 75 minutes) in front of a classroom, teaching in a primarily spoken format (still a good bit of writing on the board), telling my students that I'm disabled and that my neurodivergence especially affects communication, language, and specifically speech is a risk. Yes, there are disability laws that theoretically protect me, but being open does mean more scrutiny in ways I don't really want. When you're "just quirky," some communication ... quirks are going to be more accepted than they are when you're openly disabled, and it's not about the particular differences. Same person, same communication patterns, different responses based on the label, and that's why quirky can be safer.

Thought the fifth: Quirky is erasure. (There's quite a few kinds of erasure, and this is definitely the point to plug Neurodivergent K's post on erasure from earlier in this series.) Quirky isn't quite assimilation, but it's not not assimilation either. Quirky is when we're implicitly expected to be weird, but not too weird, and not blatantly and explicitly neurodivegent. It's what we get when we make euphemisms and talk about the (shinier) ways that someone is neurodivergent, disabled, without saying those words. It's a bit like "differently abled" that way, though less condescending because there isn't necessarily a specific disability label we're avoiding when we say someone is "quirky." Or maybe there is, and we just don't know which one.

Quirky is erasure when it is avoiding calling me autistic because I'm "not like that" (I'm more like that than you want to admit.) Quirky is erasure and dodging responsibility for properly portraying disability in fiction when you draw the quirks from neurodivergence but refuse to address the neurodivergence behind the eccentricity. Quirky is erasure of other personality traits when the oddity is all your attention is drawn to, both in fiction and in real life. And Quirky is erasure when it's given as the only vocabulary we have to discuss our differences, ignoring our disabilities. (How can you talk or write about an issue when you literally don't have the words to do so? Sometimes I suspect keeping those words from us is done intentionally to keep us from communicating frankly and openly about disability and ableism.)

And if to be safe, we have to erase ourselves, are we really safe at all?

Friday, April 8, 2016

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.

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.

Thursday, April 7, 2016

Theory of Mind Inside Out Note

I am (very slowly, partially because I've got a ton to do and partially because I have trouble with the way most philosophy-type academics write) piecing my way through Daniel Hutto's Folk Psychological Narratives. It's led to my writing thinky thoughts here before.

Well, I just found a paper that I think connects. It did, of course, study just the DMAB folks and is presumably going to be full of pathology language, but it talks about autistic people using more deliberative reasoning where we go through all the steps instead of stuff being instinctive. That paper is here: Reasoning on the Autism Spectrum: A Dual Process Theory Account.

Since Hutto's argument for why he thinks people don't typically reason out why other people acted as they did/attempt to explicitly figure out the mental states of others is that it'd involve more mental effort, and since autistic people tend to describe spending a lot of energy trying to understand the actions of others, I think we get a lot more practice at deliberative reasoning out of social interaction, which is then more tiring, but also since we have more practice at it we might use it more in other domains.