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

Wednesday, December 24, 2014

Disability in Science Fiction notes: part 2

Still reading Disability in Science Fiction: Representations of Technology as Cure. It's edited by Kathryn Allan. EasyBib tells me the citation for the book as a whole is this:
Allan, Kathryn. Disability in Science Fiction: Representations of Technology as Cure. New York: Palgrave Macmillan, 2013. Print.

Part 1, covering the introduction and chapters 1-2, is here.

Below are my (mostly angry live-blog style) notes on Chapter 3.

 Chapter 3: The Many Voices of Charlie Gordon: On the Representation of Intellectual Disability in Daniel Keye's Flowers for Algernon. Howard Sklar. 47-59.

I've read Flowers for Algernon. I had nightmares after. Insert nervousness about the chapter here.

“Ordinarily, the compressed time span of Charlie's involvement with the experiment would provide limited scope for an overview of his life; however, the dramatic changes caused by the experiment produce a radically condensed version of his life, from the metaphorical “child” that opens the narration to the self-aware “adult” that he gradually becomes.” (47.)

Ok, so this quote creeps me the heck out. Seriously. We're calling Charlie, the main character, a metaphorical child. The guy is not a child! He's a disabled adult. This is not the same thing as childhood, even if the cognitive tools he's using are the same ones a neurotypical kid would be using, which they probably aren't, the extra years of experience living and using those tools matters!

And! I'm pretty sure “that” being the pronoun-like word after child, opening the story, the version of Charlie we start with who absolutely is cognitively disabled, versus the “adult” that he later becomes? Yes, it's a linguistic nitpick and the author would probably say it's just sentence structure agreement stuff, but how come Charlie only gets an actual pronoun after he's been neurologically enhanced?

Also, what's with the idea that this makes it difficult to locate Charlie's true voice? If we're working with the assumption that a change this big is still the same person (which, meh, I'm kind of iffy on, but since I don't recall Charlie questioning it and this author seems to be working with it,) then all the voices Charlie wrote in are his. None of this wanting to find his true voice nonsense, his voice can change over the course of the story, and if he's changing we should expect his voice to change too!

“In literature and life, the actual voices of people with intellectual disabilities are typically heard-- if at all-- through other people's accounts. When their actual life stories are recorded or written, they are generally reported by others, with all the editing and redaction that entails. In fiction, the distance is even greater, with nondisabled novelists and story writers providing the words and tone for their intellectually disabled characters.” (50)

Yeah that's a big problem.
I think I'm OK with the author describing Charlie as having multiple voices over the course of the story rather than just one, but extremely not OK with the idea that one of the voices is his true voice, because then the others would be fake voices or not really his- with indication of that being his opinion, of him thinking only one of the versions is really him, kind of like with autistic people who think that if we were somehow made not autistic then we would be different people, then the idea of only the pre-experiment version being him, having his voice, is one I could buy, but are they really going to go with that idea?

OH FOR PETE'S SAKE. The author actually says it straight out “Charlie argues vehemently for the continuity between his earlier “self” and his present “self” when he describes this dilemma later to Professor Nemur” (54.) Why then are we trying to divide up selves and voices and find one that's the true one, they're all him. (Go check pg 63 or so, “But I'm not an inanimate object...” in Flowers for Algernon)

“Mostly then, what Charlie wants is for people to recognize his humanity-- both before and after the procedure. In these examples-- the progression from his earlier, developing awareness of the way he has been treated, to an attempt to weigh the significance of that treatment and how to deal with it, to arguing for his dignity as a person regardless of his intellectual capacity-- all these suggest that he is changed yet unchanged, that there is a unified core in his voice, however intelligent or lacking in intelligence the features in each of those voices may make him seem.” (54.)

I want to question a thing, now, based on the bit where as much as I have been arguing for listening to what Charlie says in evaluating who Charlie is, he is a character written by a nondisabled author and he therefore isn't the greatest example of an actual person with intellectual disabilities who fits a given assumption.
“There is indeed an assumption that intellectually disabled individuals are limited in their abilities to tell their own stories. Naturally, cognitive impairment may limit the ability to understand aspects of an individuals own experience, as it does for Charlie.” (55.)

I'm not actually going to deny that this can happen- it's happened to me before, where my own cognitive disabilities have meant it took me until years later to understand certain aspects of my experiences, and also where people's assumptions about my cognitive abilities have formed a barrier between myself and that understanding. But Charlie is not the example to use here. I know we're talking about Flowers for Algernon, but using a fictional disabled character, especially one written by an able person, as an example of a thing that can actually happen with disability to show that it can happen? Bad idea. No. Go with actual disabled people for that, not an abled authors impression of a disabled person.

“Charlie, speaking with the voice of academic intelligence and scientific authority, ultimately comes to know what his less capable voices have been saying all along: that the experiences are his alone to voice.” (55.)

AND WHY DO WE NEED ACADEMIC VOICE CHARLIE TO SAY IT? I mean, yes, great that this is how we end that chain of thought, ish, as opposed to wanting scientists saying stuff, but why do we need the now-academic Charlie to realize it before it's believed rather than listening to Charlie while he's still disabled??? That is seriously not OK.

Good that now we've got recognition of the bit where Keyes is a nondisabled author, and that this is “problematic” for the whole novel, even more so with how it ends.

That ending. It's not until Charlie is realizing that he's going to be intellectually disabled again and is scared of it (despite thinking that he was better off before in some ways) that he fragments at all. Hrm. Fear of who he used to be? That wasn't there before, it's not consistent with the Charlie we'd seen before, why'd it show up now?

Monday, December 22, 2014

Disability in Science Fiction notes: part 1

I'm reading Disability in Science Fiction: Representations of Technology as Cure. It's edited by Kathryn Allan. EasyBib tells me the citation for the book as a whole is this:
Allan, Kathryn. Disability in Science Fiction: Representations of Technology as Cure. New York: Palgrave Macmillan, 2013. Print.

Anyways, my notes from reading the introduction, chapter 1, and chapter 2 are below.

Introduction: Reading Disability in Science Fiction, Kathryn Allan, 1-15

Synder, Sharon L. and David T. Mitchell. Cultural Locations of Disability. Chicago: University of Chicago Press, 2006. Print.
Disability is a difference that exists only to be undone” (190, emphasis in original.)

Peace, William J. “Slippery Slopes: Media, Disability, and Adaptive Sports.” The Body Reader. Ed. Jean Moore and Mary Kosut. New York: New York University Press, 2010. 332-344. Print.
“People with disabilities have embraced the internet with gusto and have formed a vibrant cyber community. Disability studies scholars have also embraced the internet, but their communication and scholarship is restricted and exclusionary. This is a significant problem” (343.)

Quayson, Ato. Aesthetic Nervousness: Disability and the Crisis of Representation. New York: Columbia University Press, 2007. Print.
Quayson identifies nine main categories of disability representation: “
  1. Disability as null set and/or moral test
  2. Disability as interface with otherness (race, class, social identity)
  3. Disability as articulation of disjuncture between thematic and narrative vectors
  4. Disability as bearer of moral deficit/evil
  5. Disability as epiphany
  6. Disability as signifier of ritual insight
  7. Disability as inarticulable and enigmatic tragic insight
  8. Disability as hermeneutical impasse
  9. Disability as normality” (52.)

Chapter 1: Tools to Help You Think: Intersections between Disability Studies and the Writings of Samuel R. Delany. Joanne Woiak and Hioni Karamanos. 19-33

Basically I need to read Samuel R. Delany's stuff, because good sci fi and yeah.
Delany, Samuel R.
The Einstein Intersection. 1967. Hanover, NH: Wesleyan University Press, 1998. Print.
Empire Star. New York: Bantam, 1966. Print.

Pages 114-115 of The Einstein Intersection apparently has really good stuff in it.
“The stories give you a law to follow--”
“--that you can either break or obey.”

And in Empire Star: “The only important elements in any society are the artistic and the criminal, becayse they alone, by questioning the society's values, can force it to change” (103.)

Oh hey, I want to quote a chapter author directly rather than wanting the quote they wanted too from someone else.
Mainstream diversity courses routinely reproduce the exclusion of disability, treating it as an “add-on” to race, class, and gender. The Einstein Intersection, by contrast, illustrates how disability is used to justify other intersecting forms of inequality. For example, in the village, full participation as a sexual and gendered being depends on status as a “functional norm,” while in the city, wealth and class status are tied to making disability invisible. (32)

Chapter 2: Freaks and Extraordinary Bodies: Disability as Generic Marker in John Varley's “Tango Charlie and Foxtrot Romeo.” Ria Cheyne. 35-46

“In deciding to have the tattoo, Galloway foregrounds her cyborg status and resists normalization” (38.) This is in reference to a character who, in a sense, cured herself (funded the research used in her cure) but still choses to emphasize her status as having been disabled. In the same story, two former murderers are under “amparole,” with prosthetic arms made to be light, airy, and beautiful, as well as refusing to pick up a knife or gun.

Gosling, Ju. “Towards a Scientific Model of Disability.” Abnormal. N.p., 2009. Web., needs read, probably needs used in the engineering version along with medical and social models when introducting the models. Ooooh. See also links to other models here.

Saturday, December 20, 2014

Activism By Survey-Sharing

Autism Research Institute has a decent sized following, and they have research money with which to do things, and they occasionally do stuff related to adults. They even have a newsletter (not as frequently running or well-filled as the main one, but extant) about adult issues.  And they do webinars.

They shared a survey asking for input on future webinars! It includes an open box for topic and/or speaker suggestions, and that means people can say what kinds of topics they would like to see covered.

I'm not going to tell you that you have to take it (though I'd really like it if you did.) I'm not going to ask you to suggest interest in any particular topic. But I will ask this: think about the Autistic people you know of who might be able and willing to give a webinar on a topic you're interested in. If you do take this survey, consider suggesting them as presenters. If you are ever planning a conference or other event on your topics of interest, consider suggesting them or inviting them as presenters.

Now, here's the newsletter, right at the part with the survey, which is on the left side of the screen.

Full disclosure: I don't much like the Autism Research Institute. Much too parent and professional dominated, and too open to woo. But if we have the opportunity to give suggestions about their webinars? I'm gonna take it and make sure as many people as possible know, because getting some decent stuff up among the nonsense is still a step in the right direction while we work on rebuilding a new system that doesn't suck.

Friday, December 19, 2014

Some Gender(ed) Experiences

Last post I mentioned that yes, I use sie/sier/siers pronouns talking about myself in third person. Depending on how familiar people are with queer stuff, you might have wondered if I'm nonbinary. The answer is yes.

Some folks might ask if autism is making me confused about my gender... that answer is also yes, in a sense- I'm pretty sure "I'm Autistic" occupies about the same area that "I am whatever gender" occupies in most people's minds, and I'm not sure if that means I don't have a gender or if that means autism is my gender or what. It definitely means "not binary." Since autism isn't detachable, autism leaving me a bit confused about the specifics of my gender doesn't change the fact that I'm nonbinary!

(Also, it might be neuronormativity confusing me- if autism taking up the gender slot were a possibility more people talked about as a real and legit thing rather than it being part of "failure to conform to gender expectations" and therefore something needing to be fixed, I might have an answer as to what gender that means I have or don't have, and then I wouldn't be confused!)

But this post isn't meant to be about exactly what kind of nonbinary I am. It's about how this has affected my experience with gendered stuff.

I've been told that when I was very little, preschool age approximately, I quit my ballet class because it was a girls only class. I definitely didn't have the words to explain it at the time, and I don't have the memory to tell you now, but my guess is that my discomfort with women-only spaces due to not actually being a woman goes back that far.

You see, I'm nonbinary. I am not a woman, and I am not a man. I am Autistic. (See also: autism as gender.) And this was really confusing before I knew I was autistic, because how the heck am I supposed to explain why "You're not really a girl" isn't a dire insult if I don't know what I actually am?

In middle school, I was the only not-boy at my lunch table. Many of the tables were all boys or all girls, and I've generally been more comfortable as the only person in a group to be read as a woman than in a group where everyone is read as a woman. It took a while to figure out why this was,  but I do think I have a handle on it now.

When everyone in a group, including me, is being read as women, the assumption is that I am the same gender as everyone else in the group. This is false! This is really, really false! I am not a woman. When everyone in the group except for me is being read as a man, the assumption is that I am the only person of my gender in the group. This is usually true! There could be nonbinary folk being assumed men in the group, but since as far as I know, I've yet to meet anyone of my particular flavor of nonbinary in person, I think it's always been true to date.

Because when I am in a group that is all men except for me, including doing so in direct defiance of prerequisites (so the course catalog at my old high school still says tenor bass choir male members of chorus in good standing, and I am not a man,) everyone realizes that I'm not the same gender as the others in the space. Not so when everyone's presumed to be a woman.

This isn't actually the same thing as "not like other girls," by the way. Not like other girls implies that I am one too, and, well, I'm not. I get mistaken for one a lot, which is different from actually being one.

It's also not the same as not liking to be around women. Women are great! I'm just not one of them.

(Oh, and to Dan's parents: This is why I was totally fine with Dan saying I wasn't really a girl. It's because he was right.)

Thursday, December 18, 2014

Autistic Person Included is a Headline Because Reasons

Note: This is satire, or something like it. Also, yes, I use sie/sier/sier's as my pronouns when I'm writing about myself in third person. Everything else feels wrong saying it about myself, though other people saying it is usually not an issue. Now that this has been established, we continue!

The local woman's ultimate frisbee team looks and plays much like any other, but looks can be deceiving. You see, one member of the team is autistic, and we're therefore going to cite completely irrelevant and quite possibly deceptive information about the prevalence of autism in children, because of course this team member is actually a child despite sier status as a graduate student and teaching assistant.

Despite sier oh so inspiring struggles living while Autistic in an ableist society, sier teammates say sie is just a regular member of the team. "If sie weren't so open about it, we would never have guessed," one woman said, neglecting to mention just how little she actually knew about the developmental disability.

And yet, something must be different about this team, or the Autistic member, or the teammates treatment of sier. Otherwise, this wouldn't be news. We're pretty sure this is a feel good piece where the team is trying to demonstrate that they don't suck by acting like nothing whatsoever is different about their interactions with a disabled teammate. Because ignoring the reality of a teammate's disability is obviously the best way to make sier feel included.

Now that we are four paragraphs in, we're going to say that despite sier autism (which actually doesn't make it harder for sier to play ultimate,) Alyssa is a typical member of the team, and sier placement has nothing to do with autism. "Alyssa earned sier spot on the team fair and square," the captain noted, neglecting to mention that there aren't actually try-outs.

And now, in the final paragraph, we have some short comment from Alyssa sierself. "How is this news? This is my fourth year on this team, people." Clearly, Alyssa's impairments leave sier unable to understand that a feel-good piece on including a poor disabled person on a team is always news. 

Tuesday, December 16, 2014

A Research Survey Request

(Yeah, I'm totally willing to do this if I like your study. That's just kind of a high bar compared to where most studies on autism are, but specifically wanting Autistic respondents helps a lot there.)

Dear all!As a master student in Gothenburg University (Sweden) I am now conducting research on autism and blogging and Autistic people's communication experiences with posting. There is not much written about narrative practices of Autistic people, especially within Internet communication. That is why I find it important to convey a message to the scientific community about the necessity and advantages of computer-mediated interaction including blogs and social networks. I believe those who already benefit from it will stand for wider implementation of information and communication technology tools in an educational context as well.
That is why I kindly ask Autistic people who blog to take part in my survey, which can be confidential. However, if you want your blog to be referred to, it is also possible to put your name and the link in the reference list.
If you want to participate, have any questions, or want to see the support letter from the supervisor, please contact me Thank you in advance!

Things about this particular study that I liked:
  1. Kate started off guaranteeing anonymity. When I brought up the issue of that not crediting Autistic writers, she changed it to anonymity if we want it, citations if we'd rather have those. This is good both because it means taking Autistic input and because it means you can get credit for the work you've done.
  2. She responded well to my criticism of social skills programs that teach neurotypical standards and was interested in the idea of Autistic-nonautistic communication as a sort of cross-cultural communication rather than one side being "wrong."
  3. She did accept my throwing in blog links as answers or parts of answers for survey questions. Useful because new writing on demand can be tough.
  4. She's trying to describe Autistic communication online as it is, and was interested in the neurodiversity stuff she's seen.