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 even though 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, Alyssa. (Year Month Day of post.) Post Title. [Web log post]. Retrieved from

Sunday, August 23, 2015

In which summer involves doing things

Many things. This post is going to mostly be updates about "I did X, Y, and Z" this summer.

I went to the Computers and Writing annual conference in May, as you might be able to guess from the fact that the last post on here is my notes for one of the sessions. While there, I participated in the digital rhetoric collaboratives wiki quest, and I was one of the winners from that. As such, I got a book! Yay, books! I also reviewed two sessions for the collaborative: D5: Disability and universal access, where I got to watch Sam Harvey be awesome about demolishing the nonsense that is most applications of theory of mind. I've written a little bit about turning the concept inside out, a while back, when I asked if Autistic people might spend more time and effort guessing the mental states of others than neurotypical people do, and Sam seemed to be focusing on the ways the concept and rhetoric around it get applied as an oppressive force. I also got to meet Dani, another autistic academic, who then proceeded to write about me as the "Friend." That was cool too.

The other session I reviewed was F8: Refashioning and reimagining community identities: Performance and online spaces. That was cool because both panelists were members of the communities they were doing research about, and they got to talk about issues related to that, plus they just had really interesting projects to talk about.

I also presented about plainer language in calls for participation as an important thing- the idea of nothing about us without us includes making it so we can understand the questions being asked and therefore know what even to contribute! And then I chaired a panel after that, which was cool. Back to back panels on the last day of the conference for the win!

Shortly thereafter, I went to the Society for Disability Studies (SDS) annual conference. I was on the Digital Access Facilitation Team (DAFT) which was fun and worthwhile but also exhausting. And, just like at Computers and Writing, I was on back to back panels on the last day of the conference (this time immediately followed by tweeting two panels in a row for DAFT.) Here, one panel was on my more scholarly stuff, wanting to create software based around treating disability related language issues as a translation problem rather than something that the disabled person is 100% responsible for "fixing." The other was more on the activisty side of my stuff, talking about some experiences with disclosure on a panel with a pile of other autistic people.

Also at the SDS conference, we got to see Autonomous Press launch. I was at the launch party reminding everyone ever that I did the cover art for Typed Words, Loud Voices. On that note, did I mention that I did said cover art? It's a good book. Since my birthday is coming up, I will say that people who want to do a thing for my birthday are more than welcome to go get a copy for themselves or to donate to a library that will put it on their shelves. Given the funding structure for the upcoming Spoon Knife anthology and my plans to submit to it, this is even a semi-directly self-interested idea for what you can do! (Yeah, if I get a piece into Spoon Knife, I get more for it if more people buy Typed Words. I have a vested interest in people getting it, beyond also honestly wanting more people to read it.)

I wrote an abstract and submitted a piece for the INSPIRe annual virtual conference, entitled "Democratizing Disability Innovation." I plan to edit that piece and send it... somewhere. Not sure where yet, but I think it's worth sending somewhere. I started working on my piece for Spoon Knife. I did some editing on my piece on the translation (or cognitive interpretation, since that's a word that some autistic people use for it when they get a handy dandy friend to do this translation and support for them, see Kassiane's piece,) in the hopes of getting it into a journal. I really need to transcript the presentations I gave at the conferences, but ugh auditory processing issues are a thing. Making transcripts of my own talks, even with good recordings, is not easy, and I suspect that I actually have meh recordings. Oh well, it needs done so I will get it done. And then I'll post about it when it happens, since I'm pretty sure this is where said transcripts are going. At the least, it's one of the places.

In the last few days, Kerima made an important post about appropriation and erasure in activism, with a good bit of the focus on two good friends of mine, Lydia and Kassiane, because they are Autistic people of color, Lydia genderqueer and Kassiane a woman. This is relevant to "what Alyssa did this summer" because Lydia and Kassiane are friends, but also because Kerima linked to a post of mine for documentation and explanation on one of the issues, which means "got linked in an important post" is a literal partial answer to the question.

Sunday, May 31, 2015

Computers and Writing Session D5, Friday May 29 3:00-4:15pm, Disability and Universal Access.

I attended the Computers and Writing conference at University of Wisconsin-Stout. One of the panels where I took pretty good notes was session D5, Friday May 29 3:00-4:15pm, Disability and Universal Access. I'm now posting my write-up of the panel and my notes. 

Here's the nicer write-up, which I also added to the Digital Rhetoric Collaborative's Wiki. Maybe someone else will edit it with additional information, so that may not remain the same as what's below.

This panel began with Steven Hammer of Saint Joseph's University presenting on “The Sounds of Access: Disability, Art, and Open Source DIT (do-it-together) Interventions.” Hammer's presentation is concerned with Western art history and multimedia writing's tendency to ignore the perspectives and contributions of disabled people, and with the tendency towards a deficit model. He notes that after a diagnosis, there is a prognosis, which rather than simply describing what life will or could be like, it uses a presumed (and now unavailable) norm as a basis and describes how life will be different from that norm due to the diagnosis.

He suggests, rather than asking about how only certain people with certain diagnoses have bodies which are failing or considering how all bodies will eventually fail, asking “how are you failing right now?” He proposes that we consider the medicines we are taking to keep our bodies running every day.

With this question, however, Hammer mentions the risk that people will presume their experiences of bodily failure is equivalent to that of people with disabilities, who face oppression and marginalization based on their abilities in addition to the primarily practical concerns of keeping their bodyminds running.

Hammer then spoke about projects done together which use open source and glitch-theory methods to increase the accessibility of artistic production. One such project was his work on instruments for Arduino.

Hammer also drew a connection between Alexei Kruchenykh's idea of developing a language with no fixed meanings and his communication with his son, where the sounds are not words and the meanings might change from day to day.

After Hammer's talk, Samuel Harvey from Saint Cloud State University spoke on “Autism, Neurodiversity, and Identity Formation Through the Internet.” Harvey's talk covered the history of work on identity formation and on theory of mind, including the relations of these issues to autistic people. Noting that work on identity formation presumes that identity formation rests upon social interaction and the ability to understand what others are thinking (Theory of Mind,) and that autism comes with difficulties in social interaction, he asks what this would mean for identity formation in autistic people.

From there, he continues on to enthymemic dehumanization of people, particularly autistic people, where statements about identity formation, humanity, and theory of mind are made which logically lead to (never explicitly stated) denial of identity or humanity to marginalized people. The two primary examples Harvey notes are: 1) If identity formation depends on an understanding of what others think, or a theory of mind, and autistic people lack a theory of mind, then autistic people would be unable to develop an identity, and 2) If theory of mind is innate to humans, and certain groups are found not to have a theory of mind, that members of those groups are not human.

Harvey also notes issues with the current methods of testing theory of mind, primarily the Sally-Anne test, in that passing these tests depends on linguistic ability and upon cultural factors. He finds that rather than being innate to humans, theory of mind is innate to dominant groups, who use it as a tool of oppression to rob people of identity, agency, and personhood.

The third planned speaker for the panel, Annika Konrad of University of Wisconsin-- Madison, did not appear to speak on “Visually Communicating Visual Impairments.”

Liberty Kohn of Winona State University spoke third, on “Sound Pedagogy: Sound Art as Rhetoric, Poetic, and a Voice in the Composition Classroom.” He explored audio assignments, noting that while it is common to assign students to read multiple kinds of media, if students are not also writing multiple kinds of media they are not participating in a fully multimedia experience. He spoke about meta-language, and having students make versions of audio both including and excluding the meta-language in their assignments, and of the rhetoric of these choices.

In addition, he covered the idea of teaching non-musicians to produce audio in the classroom, as audio assignments are currently primarily the domain of people whose areas of study relate directly to audio. 

Now for the less polished notes I took during the session:

Session D5: Friday May 29, 2015, 3:00-4:15, Disability and Universal Access themed panel.

Steven Hammer, “The Sounds of Access: Disability, Art, and Open Source DIT (do-it-together) Interventions”

Diagnosis, puts a thing on us.
Prognosis. Based on knowing that a person has a given thing. “What's life like based on what it could have been before.”
What does “no significant development” mean?
Asks, “How can we get beyond a deficit model?”
Amundon, 2000 “normal/abnormal is the basis of the deficit model.”
“human variation rather than pathology” Reid & Valle, 2004.
“[the] non-neutrality of techno-social artifacts and contexts... they are embedded... theya re not sterile, they're imperfect...” Cates 2014.

“from temporarily able bodies to always-already malfunctioning bodies” is on the presentation and he said it and I think that's original wording to Hammer. Also I like this wording.

Asking “how are you failing right now?” rather than the thought of this as “someday” your body will fail, think about the medicines you're taking.
Of course, we need to make sure people aren't concluding that they belong in disabled people's spaces because they have a headache or some such because that'd be fucked up.

Draws a parallel between Alexei Kruchenykh's idea of developing a language with no fixed meanings and his communication with his son, where the sounds are not words and the meanings might change from day to day.

The world is built for people who have an identity that is fucking fictional!

Samuel Harvey, “Autism, Neurodiversity, and Identity Formation Through the Internet”

Henderson, Davidson, Hemsworth, and Edwards 504?? Something Sam's citing.

“If identity is formed through communicating with others, and autistic people struggle with communicating with others...” [Ask Sam if I can see his slides after?]

Samuel brings up the possibility of written language as a discourse where autistic people could develop their identities.

Davidson 796. “NT conversations have a very fast-paces rhythym...”

Erikson+Cohen=> identity is formed by having a theory of mind.

First two publications of theory of mind, the titles are Does the X have a “Theory of Mind”?, with Chimpanzee and then Autistic Child. Erm erm erm.

Enthymemic dehumanization, leads to Autistic people not being able to have identities because we lack a theory of mind... yup.
Theory of mind innate in humans, bunch of folks don't, therefore those groups aren't human.

Yeargeau+Heilker state that autistic people have our own rhetoric and language, oh hey, that fucks up our test results in the area of language.

Halle and Tager Flusberg (2003), Lohman and Tomasello (2003) as cited in Miller.
Folks like to claim that language has no impact on the results of the test, which 1) Wrong, and 2) claims the test is arhetorical.

Tons of other factors wind up actually messing with theory of mind results. Whoops. Cultural stuff, socioeconomic stuff, linguistic stuff, and also quite a few kinds of neurodivergence.

Theory of mind is (maybe) innate in dominant groups, used to fuck over the disadvantaged groups.

“Theory of mind is innate in dominant groups, it is a tool of oppression meant to rob people (mostly autistics) of identity, agency, and even personhood.”

Harvey thinks theory of mind is a theory of the minds of dominant group members. That is, the folks who have a theory of mind don't actually have it about members of the groups said to “lack” a theory of mind.

Friday, May 15, 2015

Yes, That Too Acceptance. Love, and Self-care: #AutismPositivity2015

I have been writing less on my blog since... well, ever since I left for China at the end of August 2013. Spending an academic year at a university that really, really did not want me to be there was extremely draining, and I've already written a lot of things on this blog. I'm not really out of things to say, because there are always new ideas and new connections and new events, but I'm low on energy to say them here, so I am posting less often than I used to. (I used to post every day, sometimes multiple times a day, and that hasn't been the case since 2013.) 

That's OK, and deciding that it's OK is part of my accepting my limits and taking care of myself, which is this year's theme.

I've also been using some of what I write for academic purposes. I've done some short fiction, and this past year I was in a capstone engineering course that involved 50+ page reports at the end of each semester. That's a good bit of writing. I've also been working on a chapter for a book, which is currently at 30+ pages, and conference presentations, and I've been reading and taking notes for multiple projects. I've got papers and chapters to write, and will continue to, and if I want to be making a living, I'll need to be using my writing for places that help with that goal. 

In a very literal and physical sense, earning a living is required in the current system (and that's not an endorsement of the system, just an acknowledgement that to survive, I need to exist in it) so prioritizing placement of my writing in places where I get compensation is kind of self-care, in a physical and pragmatic way. 

Not so much choosing to write things that would be palatable to the mainstream. I don't do that so much, because writing things I disagree with to survive is survival but not self-care. Ensuring that I have the resources I need to live through placement is a different thing than getting resources by silencing myself or others, and only one of those am I talking about here.

And you want to know what else is self-care? Using my AAC device when I'm tired and find it easier to type than to speak, not just when speech is completely gone. That's self-care, and it's something I've been doing, with friends and at school. I'm glad I'm doing it. Pushing for normalcy for the sake of normalcy is kind of the opposite of self-care, and I've had enough of it.

Saturday, May 2, 2015

Late for Blogging Against Disableism Day

Disableism/ableism seem to be pretty much the same thing, so far as I can tell, in case anyone is familiar with one or the other. I think it might be a regional thing? Both are about all the kinds of discrimination and stereotyping and barriers that disabled people have to deal with.

I think what I want to talk about today is related to passing (or not passing) and outing myself and what happens after, when people say "I would never have known!" or "You don't need to tell me that!" or "I'm so sorry!"

Because... there is ableism there, and it's the most recent example that's coming to mind. That's a big improvement over last year, when I was struggling with a school that was pretty actively trying to block things I was doing and made attempts at preventing me from coming and then later at having me sent home because I'm autistic. That was really blatant and nasty, and I'm glad to be out, and in comparison what I'm dealing with now- well, let's just say I'm in no hurry to go back to last years situation. Here is good. Now is good. Not perfect, hence still having something to talk about, but pretty good.


Because this is for Blogging Against Disableism Day, or BADD, I figure there might be some folks reading this who haven't read anything else. I'm Autistic, I usually can and do speak at least some, but not always. When speech is either non-existent or not doing everything I need communication for, I write and I use text to speech. I'm also a graduate student in math and a teaching assistant in math, so I work as a math tutor and teach a section of precalculus.

Last Thursday (bit over a week ago) I had two exams in a row, and then two more classes and work. By the end of the exams, speech was not working, which for me is not even a little bit of a surprise. I went to my next class, graph theory, and I mostly didn't need to talk. I wrote a little bit to my classmate who sits next to me, but mostly language wasn't needed. In between that class and the last one of the day, functional analysis/operator theory, I was in the classroom (both classes were in the same room) and one of the engineering students in operator theory came in. He tried to talk to me beyond what I could handle with gestures, so I went to the whiteboard with one of my markers and explained that I couldn't actually talk with my mouth right now and that it was related to my being autistic.

"I'm so sorry."

Why are you sorry? What is there to be sorry about? In that situation, I can't think of a reason for him to be sorry that doesn't involve ableism.

The assumption that disability is something to be sorry about, something to feel sorry for, is ableist. (Someone not being a fan of their own disability, or being angry about the barriers they face, is very different from someone assuming that we must feel a certain way about our own disabilities.)

When I tell someone I'm Autistic, I don't want the first thing I hear in response to be that they are sorry. I really, really don't want to know how they think I should feel about my autism. I'm not sorry. Why should they be?

Monday, April 27, 2015

When I Am Using Text To Speech

I've written a bit about my use of text to speech software as a form of augmentative and alternative communication. On my laptop, I have eSpeak which does English pretty well and Chinese poorly (but extant!) On my iPad, I have Proloquo4Text. I really like having the ability to type and pull saved phrases, because there are phrases I use frequently and there are phrases that I might not remember I have the option of using unless I see them. (Setting boundaries of No, I can't/won't do the thing or asking for help are the parts where I might not remember I can do that.)

There's some articles around on how to do communication with AAC users, which is cool and a nice starting point, but folks are going to have different preferences related to how they use their AAC and how others interact with them. Thus, I'm tossing my personal set out there, in no particular order.

  1. When I am typing, this is not always equivalent to "gathering thoughts," but it's usually close. If you were talking before I started, go ahead and finish. This isn't me starting to talk yet. Just don't do "I see that Alyssa has started typing so I will now start talking" and we're probably fine.
  2. As a corollary, since we're not treating my starting to type as the same thing as me talking, we're all the way not treating it like that. If I start typing before you finish talking, This is not me interrupting you. It's not me interrupting you until I hit "speak" on whatever I wrote while you're still talking.
  3. There might be times when I interrupt. Just like I might when I'm speaking with my mouth. It happens! Especially if there's an emergency, but also because in natural conversation people do sometimes interrupt each other.
  4. Once I hit speak, if you start talking before the software finishes, you are interrupting me. Are there times in normal conversation where that could happen and be OK? Sure, and I'll judge it the same whether I'm using my mouth or typing. But let's not pretend that it's not happening. (The existence of a replay button on Proloquo4Text means I may less annoyed by an interruption than if I were speaking, unless I have reason to believe you're only interrupting because I'm using AAC, in which case I probably think you're being terrible.)
  5. If you wouldn't finish my sentences when I'm speaking, don't try when I'm typing.
  6. Unless I am turning my device around to show you what's on the screen and you're moving it to see it better (I don't always know what angle is best for showing someone) don't touch my device. It's doing the job of my mouth/vocal cords/etc.
  7. Talk to me, not around me.
Long story short, there's some practical questions like "When can someone else touch the device?" and "What does "starts typing" count like?" but we should be looking at a fairly typical conversation.