Please, autism researchers, study these.

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

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

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

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

1. Inconsistent speech and AAC support for autistic adults.
   
   I'm an adult. I can speak (usually.) When I can't speak, I use AAC. AAC research seems to be focused on two groups: adults with neurodegenerative disabilities, and young children. Autistic adults who can sometimes speak and sometimes not are neither of those categories, but there's a lot of us. This might be more common than "always has speech" is, among autistic adults, but thanks to behaviorist approaches and the assumption that "can sometimes" is identical to "can consistently" given a sufficiently strong motivator, professional types tend not to get this. I would like to see research on what supports, including AAC, tend to make communication easier/more effective for us.
   
2.  Employment supports that are neither sheltered workshops nor "we think they're all good at technology" start-ups that might pay well but are still pretty segregated.
   
   Sheltered workshops can (and often do) pay below minimum wage. Autistic people, like all disabled people, are more likely to live in poverty than abled people. Are these facts connected? You bet! Programs like Specialisterne, on the other hand, are founded by (usually parents) based on a stereotypical idea of "autistic strengths" that usually means technology work. Or Microsoft has a program to hire autistic workers now. These can be useful, if you're an autistic person who wants to be working in technology. I worked an IT job for a while. It was a good experience in many ways. I also never want to do that again. I like writing. I like teaching. I like art. I've earned money on all these things (mostly teaching) and would happily continue to. These are not the specific jobs you're going to come up with if you're a non-autistic person trying to provide employment support for autistic people.
   
   So maybe, just maybe, we need to take a look at employment supports that are not limited to a specific kind of job. (Or, you know, look at more kinds of jobs? Because the needed supports will vary based on what kind of job it is.)
   
3. Burnout.
   
   After reaching some ideal of indistinguishability and hanging out there for a little bit, or just after the demands get to be too much even if we were never indistinguishable, we can hit a breaking point. Then everything is way harder, we have way less energy, and our abilities shift. Sensory overload might be more of an issue. What can we do to make this less likely to happen? What supports would help a person going through this? People dealing with this have written about it, both during and after. Getting some idea of what tends to help us vs. what tends to make things worse would be great for anyone who deals with this in the future. Even better if we can help people not have this happen. Burnout is not fun.

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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#Rhetoric and #Aphantasia, 3/3, Zeman et al.

I'm writing some more about aphantasia, or no mind's eye. Part 1 is here, and Part 2 is here. I think this is the last rhetoric discussion about aphantasia for now.

So now, after looking at some modern/mainstream articles and some older stuff – Galton's 1880 paper and a tracing of how people have thought about mentalimagery/the lack thereof by Bill Faw, I'm going to look at how Adam Zeman, those working with him (Michaela Dewar for both the papers where the word aphantasia is used, Sergio Della Sala for all three papers I'm looking at, and Lorna A. Torrens, Viktoria-Eleni Gountouna, David J. McGonigle, and Robert H. Logie for the loss of imagery paper that wound up inspiring the later aphantasia papers), and those reacting to their work in formal academic settings. I think of Zeman as the main person mostly because he tends to be the one to talk to journalists. (Isn't that how it goes?)

I start with the 2010 paper in Neuropsychologia. I did a "press release" report on this one for my neurobiology class this semester, which I may wind up sharing here too. (Note that this was published after Bill Faw makes his hypothesis about imagery-like processes at the subconscious level, so any evidence to the contrary was not available to him when he was writing.) In the introduction, the authors start off using “most people” instead of “people” when describing the ability to “call to mind an image that is less vivid than the original but has a visual 'feel.'” (145) This might seem like a small thing, but it's not. All too often, researchers talk about what all people do and implicitly exclude folks who don't do that from humanity. It's enough of a problem to have led to the paper, “On Not Being Human.” Pitfall #1 avoided.

The authors mention a debate over the importance of (visual) mental imagery in cognition, whether it plays a key role (maybe even a required role) or whether propositional/factual knowledge is sufficient for imagery tasks. As someone who doesn't experience any (visual) mental imagery, I know that there are other ways to do it, but the thing about scholarly discourse is that everything needs to be studied and checked. At least they're asking questions about how folks without mental imagery do the things rather than insisting that if we can do things like recognize rotated objects we must actually have a minds eye. The authors then propose that there are several ways to do imagery tasks at the cognitive level. Hi, cognitive (neuro) diversity, and that multiple ways might be available to “healthy adults.”

(Now what does it mean to be healthy here?) In this case, I think it refers to the fact that the in cases the authors know about where mental imagery is not a thing, it had been a thing before (so they recognized that there was a change instead of it being a normal state like it is for me) and then when it stopped being a thing, it was an event that also led to trouble with the imagery tasks usually used to check if a person can visualize things or not. They were also related to injuries or illnesses. Then MX shows up having lost his ability to visualize (again, not a thing I'd be able to show up with because I'm totally used to not visualizing), and he can still do these tasks. Mostly. There's some difficulty immediately following the loss of visualization ability, and a decrease in these difficulties as time goes by. The study authors interpret this as initial difficulties followed by development of a verbal strategy.) This upsets the theory that visualization is needed, though not necessarily the one that it's related or used for most people. The authors want to know how, which wasn't examined in the cases reported in 1954 where the ability to create certain kinds of mental visualizations went away after injury but the ability to do certain things visualizers would expect to be related weren't affected. (Reading and writing after not being able to visualize recently viewed pages, which wait people visualize pages? Also drawing building plans after not being able to visualize new building plans.) Brain, the author of the 1954 paper, noted that this must mean disconnection between the “visual imagery” related tasks and actual visual imagery was possible.

Despite the focus on understanding what MX does rather than what he doesn't do (the research team even goes into the fMRI part expecting that he's going to show different activation patterns than the neurotypicals do) they do talk about abnormal patterns of activation and healthy controls. That is, there's a definite “normal” mind that the authors are working with for this paper.

Moving on to the 2015 letter to the editor in Cortex where the term “aphantasia” is finally coined, we see a different tone. We're still talking about “imagery generation disorder” for the 65 year old who suddenly stopped having mental imagery, and we're still talking about a “condition”, but there are differences. Rather than assuming visual imagery is an everyone thing, it's now described as a most people thing. They also suggest that this is going to be a variant, comparing it to synaesthesia (not usually pathologized!) and prosopagnosia (kind of pathologized.) Of course, Zeman et. al. are calling both of those things disorders. So. It's a bit of mixed bag. The authors are replacing clearly pathologizing terminology like “defective revisualization.” They're also doing better than most of the journalists at not assuming that their readers all have mind's eyes. Quite a few of the journalists write like they think everyone in their audience can visualize, and that the aphantasiacs are not their audience. Really, 2% of the population is significant and we're probably more likely to be reading an article about aphantasia than the visualizers are. This is a bad assumption, which Zeman et. al. aren't showing.

Then, “Reflections on Aphantasia”, part of a 2016 discussion and again in Cortex, shows a distinct clinical focus, as one would expect in an academic journal focused on the relationship between the nervous system and cognition using neurodivergent people for contrast. (Both acquired and developmental.) The authors point out that calling mental stuff organic or functional doesn't quite work as a divide. (Functional sounds a lot like an academic version “all in your head” to me, in that functional apparently implies reversible? This idea is one of the things the authors are criticizing.) They point out that a range of factors can affect the level of visual imagery, including certain medications, depression, brain injury, and PTSD. They argue that lifelong aphantasia is unlikely to have such a source (and is therefore not pathological? Zeman is pretty insistent that aphantasia is not a disorder when interviewed. Or at least that congenital aphantasia isn't a disorder.) They also say that other psychiatric factors should be taken into account when assessing someone who claims aphantasia. It sounds like they're trying to have their cake and eat it: aphantasia isn't a disorder, they're born this way. But here's all this disordered stuff that could also cause it, and if you experience/complain of aphantasia because of those things, it's a disorder. So maybe it is?

I'm a bit reminded of the “we're not crazy” discourse around asexuality and around being transgender. Some of us do have pathologized stuff going on in addition to being asexual/transgender/aphantasiac. (Hi, I'm Autistic, asexual, nonbinary, and aphantasiac!) That doesn't mean the other states are somehow invalid or pathological, even if they are related to or directly caused by my being Autistic.

At the end of it all, I'm thinking people aren't quite certain how to place aphantasia. Is it a disorder? A disability? A sign of something else that's one of those things? Just a natural variation that we legitimately don't need to pathologize? (Even if it comes with other stuff we tend to pathologize?)

I lean towards variation that we don't need to pathologize, even if it comes with (or is caused by) stuff we tend to pathologize. I also lean towards disability under certain circumstances. In environments that are very specific about wanting visual methods to be used, aphantasia could well be disabling. That doesn't mean other people are talking about it that way. We're currently getting a mix where folks aren't quite sure how to write about it, I think.

Works Examined

Zeman, Adam, Michaela Dewar, and Sergio Della Sala. "Lives without imagery–Congenital aphantasia." Cortex 3 (2015).

Zeman, Adam, Michaela Dewar, and Sergio Della Sala. "Reflections on aphantasia." Cortex 74 (2016): 336-337.

Zeman, Adam, et al. "Loss of imagery phenomenology with intact visuo-spatial task performance: A case of ‘blind imagination’." Neuropsychologia 48.1 (2010): 145-155.

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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.

Scholarship in the Digital Age Notes

And yet another "Alyssa reads a thing, here's sier notes." Yes, these are books I've been reading as I work on various chapters and papers and proposals as an academic person. 

Citation for the book, as per usual.

Borgman, Christine L. Scholarship in the Digital Age: Information, Infrastructure, and the Internet. Cambridge, MA: MIT, 2007.

And here's my notes!

In the first chapter, Borgman notes that much of the content of the Internet is unverified/unverifiable stuff like blogs and list serv discussions. As more and more academics blog, I question both the unversified nature and the unverifiable nature of these forms of media- blog posts with references exist- I know because I write these.

“Students acquire an insatiable appetite for digital publications, and then find on graduatiion that they can barely sample them without institutional affiliations” (3.) This is a huge, huge problem for independent scholars, especially poor independent scholars. And guess who's more likely to be an independent scholar rather than have affiliations? Exactly the same people who face barriers to participation in academia.

Nevertheless, making content that was created for one audience useful for another is a complex problem. Each field has its own vocabulary, data structures, and research practices. People ask questions in different ways, starting with familiar terminology. (10.)

Basically the quote I just copied in above. This is a big argument in favor of the disciplinary versioning with discipline-nonspecific version approach, though it also raises a question: what is the current intended audience, and should that be the indended audience? In conversations about disability, disabled people need to be part of the main intended audience, not an add on.

“Journal articles are more valuable if one can jump directly from the article to those it cites and to later articles that cite the source article” (10.) Oh hey, the Chinese journal system I used to download a ton of papers when I was in Tianjin can do that. It was useful, except for the part where a lot of papers didn't actually cite anyone...

Wissenschaften is apparently a German word that covers sciences, social sciences, and humanities. That is really cool. Also, cyberwissenschaften for the cyber kind. That's cool, but it's German and that means most USAians won't really know or use it. Sads. Cyberscience: Research in the Age of the Internet by Nentwich apparently talks about this some. Woo linguistics but sads because English.

I think I need to find William Gibson's novel, Neuromancer.

“Notions of scholarship, information, and infrastructure are deeply embedded in technology, policy, and social arrangements” (33.)

“Underlying the technical and policy developments are theories and philosophies about what is socially acceptable and appropriate” (33.)

“Scholars in the twenty-first century continue to use those channels [in person, by phone, and by mail,] while also communicating via e-mail, blogs, and chat” (47.) Ok so blogs are unverfied and unverifiable, but also are a way scholars talk to each other? That makes SO MUCH SENSE. Oh wait, no, it really doesn't.

Oh hey, problems with peer review. Ibby talked about those some in the cognitive accessibity and why we should share piece on the feminist wire, too. Lets see what Borgman's got to say.

“Double-blind reviewing is difficult to maintain, especially in online environments, as authors can be identified by searching for similar work on the topic of the paper.” (61.)

Cronin, B.- interesting author. The Citation Process: The Role and Significance of Citations in Scientific Communication (1984), The Hand of Science: Academic Writing and Its Rewards, (2005.)

Peer review is a social process, with all the problems that can come from social processes.

Open posting and review of papers where anyone may comment brings up the question of who is a peer. The system used to be pretty well closed, with authors and reviewers being the same set of people. (I'm totally in favor of questioning who is a peer, the current system is super elitist. Not sure what Borgman thinks of blowing it open like this, I think she's trying to sound unbiased here?)

“Reviewing can be a conservative process that is more likely to reinforce the norms of a field than to identify significant breakthroughs. Articles that are ultimately highly cited often have difficulty getting published.” (62.) She cites McCook 2006, Meadows 1998, Nature 2006, Shatz 2004, and Weller 2000, 2001 for this. So many citations, here's the full ones below now.

McCook, A. (2006). Is Peer Review Broken? Scientist 20 (2): 26.

Meadows, A. J. (2001). Communicating Research. San Diego, CA: Academic Press.

Nature Peer Review Trial and Debate. (2006). Nature. <http://www.nature.com/nature/peerreview/index.html>

Shatz, D. (2004). Peer Review: A Critical Inquiry. Lanham, MD: Rowman and Littlefield.

Weller, A. C. (2000). Editorial peer review for electronic journals: Current issues and emerging models. Journal of American Society for Information Science and Technology 51 (14): 1328-1333.

Weller, A. C. (2001). Peer Review: Its Strengths and Weaknesses. Medford, NJ: Information Today.

“New technologies did not result in shifting the balance among stakeholders as radically or as rapidly as some had hoped, largely because social practices are much more enduring than are technologies (65.)

“In a print world, most relationships are bibliographic references to other documents or to data sources. In a digital world, these references can be automated links that will take the reader directly to the source document or even the cited passage within that document.” (70.)

“With active links, readers can follow a trail directly to sources and data, and may be more likely to verify claims” (70.)

Information technologies now enable anyone to be a publisher, in the generic sense that anything “made public” is published. Nevertheless, the supposedly low barriers to entry in computer-based publishing ignore the complex relationships between stakeholders. “Self-publishing” is an oxymoron in the scholarly world. Authors need peer-reviewers; publishers need authors, editors, and reviewers; and libraries need content to collect, organize, make accessible, and preserve. (76.)

Because academic publishing doesn't do the whole self-publishing thing, depending on others reviews before permitting publication, the lowering of technical barriers to publishing is insufficient on its own to make stakeholder voices be heard in academic conversations. The lowered technical barriers to entry mean that a social change of listening to stakeholders and inviting them into conversations are easier to do from a logistics standpoint. That's it.

Changes in online review led to asking “who is a peet?” “When considering the legitimization of digital documents online, the question becomes, “legitimate to whom?” (84.)

“Students, practitioners, scholars with minimal access to the published literature, and the general public usually are happy to read and cite any free version of a document they can find online” (84.)

Posting documents online was considered prior publication as far as journals were concerned for a while. As more and more authors took advantage of the interent to post working copies of papers on repositories and personal websites, the policy changed, and such posting and circulation became an informal communication which no longer prevented journal publication. [Like Melanie Yergeau's blog post that got expanded into an article on Disability Studies Quarterly!]

The ways that people actually read (or decide whether or not to read) scholarly publications aren't perfectly suited to print, with skimming of titles, abstracts, and conclusions more common than reading the entire article linearly. Similar jumping around sections is common for books as well. Electronic publications could take advantage of their increased flexibility, including the lack of requirement for linearity, and design for these actual habits. However, this doesn't usually happen. Online texts typically attempt to be just as linear as print texts.

Scholarly information never will be completely translatable between disciplines any more than languages ever will be perfectly translatable. Some ideas within fields cannot be fully expressed in the language of another field, just as some ideas in French or Chinese cannot be fully expressed in English. We can improve the transmission and translation of ideas through tools and practices, however. (230.)

I think that also ties in with the paradigm stuff that Nick Walker talks about in his essay where he describes the neurodiversity paradigm. Ideas from different paradigms don't really translate well to others, usually. Sometimes a piece of data can be picked up from one and re-interpreted in another, but it's a lot of work.

The lack of perfect translatability between academic fields is both a strength and a weakness of information infrastructure. It is a strength in that fields can express themselves in the full richness of their own languages. It is a weakness in that rich internal structures can create rigid boundaries between fields. Interdisciplinary work depends on the ability to span those boundaries. (231-232.)

Forfeiting the richness of local language is too high a price to pay for interoperability. (232.)

These two bits line up big time with the whole translation thing. Translators are important, both across disciplines and between activists and academics, and all kinds of cultural differences within and outside academia.

And now I go through the references section for stuff I'd read if time were infinite. I probably won't read most of it, though, because time isn't infinite.

Artandi, S. (1973). Information concepts and their utility. Journal for the American Society for Information Science 24 (4): 242-245.

Bailey, C. (2005). Open Access Bibliography: Liberating Scholarly Literature with e-Prints and Open Access Journals. Washington, D.C: Association of Research Libraries. <http://info.lib.uh.edu/cwb/oab.pdf> (URL is from 2006, might not still be working.)

Barnett, G. A., Fink, E.L., and Debus, M. B. (1989). A mathematical model of citation age. Communication Research 16 (4): 510-531.

Crane, D. (1972). Invisible Colleges: Diffusion of Knowledge in Scientific Communities. Chicago: University of Chicago Press.

Journal of Documentation- the article cited is way out of date now but the journal sounds cool.

Day, R. E. (2001). The Modern Invention of Information: Discourse, History, and Power. Carbondale: Southern Illinois University Press.

Dillon, A. (1994). Designing Usable Electronic Text. London: Taylor and Francis.

Duguid, P. (2005). “The art of knowing”: Social and tacit dimensions of knowledge and the limits of community of practice. Information Society 21 (2): 109-118.

Gieryn, T. F. (1999). Cultural Boundaries of Science: Credibility on the Line. Chicago: University of Chicago Press.

Hemlin, S. and Rasmussen, S. B. (2006). The shift in academic quality control. Science, Technology, and Human Values 31 (2): 173-198.

Hughes, T. P. Human-Built World: How to Think about Technology and Culture. Chicago: University of Chicago Press.

Kling, R. (2004). The Internet and Unrefereed Scholarly Publishing. In Annual Review of Information Scheice and Technology, ed. B. Cronin, 38: 591-631. Medford, NJ: Information Today.

Knorr-Cetina, K. (1999). Epistimic Cultures: How the Sciences Make Knowledge. Camrbridge, MA: Harvard University Press.

Latour, B. We Have Never Been Modern. Trans. C. Porter. Cambridge, MA: Harvard University Press.

Latour, B., and Woolgar, S. (1986). Laboratory Life: The Construction of Scientific Facts. 2^nd ed. Princeton, NJ: Princeton University Press.

Tenopir, C., and King, D. W. (2002). Reading behaviour and electronic journals. Learned Publishing 15: 259-265.

Tenopir, C., and King, D. W. (2004). Communication Patterns of Engineers. Hoboken, NJ: Wiley.

Stumbled On: The Engineering Handbook of Smart Technology for Aging, Disability, and Independence

It's a PDF version, and I found it here. Since I'm in engineering and in disability, this is the kind of thing I am always interested in when I find it. Though I am definitely worried/expecting that it will be super medical model or maybe scientific model because that's where engineering tends to hang out.

First things first: the whole book citation is:

Helal, Abdelsalam A., Mounir Mokhtari, and Bessam Abdulrazak, eds. The Engineering Handbook of Smart Technology for Aging, Disability, and Independence. Hoboken, NJ: Wiley, 2008. PDF.

The select tool lets me select text, rather than selecting the page as an image, which I think means it's screen-readable.

It is one of those books where the different chapters have different authors, so when actually using it the different chapters get cited differently under most style guides. Yay for how long the works cited is going to be when I use books like this?

Also, the pdf is 971 pages long. Not every page in that is part of any chapter, but that is a lot of pages. There is no way I am sitting down and reading the whole thing. So I'm going to start with the table of contents and the index to figure out what to read on a first pass through, after which I'll make said pass through and take notes on that. Other parts, I may go back and read when they seem relevant to a particular project I'm working on. It's happened.

The chapters I think I want to read in full are:

• International Policy Context of Technologies for Disabilities: An Analytic Framework. 49-60. Rene Jahiel.
• ISO 9999 Assistive Products for Persons with Disability: Classification and Terminology. 117-126. Ir. Theo Bougie.
• Part II: Users, Needs, and Assistive Technology. Chapters 7-12, p 127-236.
• The Communication Assistant (Alternative Communication). 297-316. Leanne L.West.
• Context Awareness. 585-606. Jadwiga Indulska and Karen Henricksen.
• Universal Design/Design for All: Practice and Method. 803-818. Edward Steinfeld.
• Usability in Designing Assistive Technologies. 855-866. Jean-Claude Sperandio and Marion Wolff.

That's a total of 12 chapters, which is still a lot, but considering that there are a total of 49 chapters it's a significant reduction.

Going through the index, I also want to spot-read pages:

2, 5-7, 11-24, 29, 31-35, 39-41, 46-47, 65-68, 72-74, 101-116, 121, 130, 257-259, 273, 282-286, 291-292, 322-334, 389-392, 397-399, 441, 572-574, 616, 793, 712, 770-772, 788-793, 823-824, 826-829, 846-848, 907-920.

Yeah, I've got a lot of reading to do now. But I'm hyperlexic and interested in the topic, so yay!

Technology and Social Inclusion Notes

And yet more "Alyssa reads a thing, and then sticks sier notes online" type stuff. This time, I read Technology and Social Inclusion: Rethinking the Digital Divide. 

Full citation is: 

Warschauer, Mark. Technology and Social Inclusion: Rethinking the Digital Divide. Cambridge, MA: MIT, 2003. 

And yes, there is a lot of MIT Press stuff on my shelves. I get to the physical store a few times a year and they have a sale/hurt books shelf that lets me get academic books for often $3 or $5. This is useful. Anywho, the notes.

Projects to increase access and use of computers and the internet run into problems when they focus too much on simply providing hardware and software, rather than on human and social systems that need to change if the technology's existence is going to change anything.

“The stereotype of disconnected minority groups could even serve to further social stratification by discouraging employers or content producers from eaching out to those groups” (7.)

“The digital divide framework provides a poor map for using technology to promote social development because it overemphasizes the importance of the physical presence of computers and connectity to the exclusion of other factors that allow people to use ICT for meaningful ends” (7.)

Note: ICT=information and communcation technology.

Book works as one more citation for extra utility of the internet for disabled people, woot!

Literacy and internet technology education are both more effective when using content relevant to the learners needs and social conditions. It's often best to have this content created by the learners!

Reading and understanding typically involves the use of a large amount of background knowledge. [Book uses example of basketball game. Call for submissions example mine.] When reading a call for submissions, a person uses their knowledge of the topic (as long as the topic is explained in words that cause retrieval of this knowledge- a disabled person might not know the academic terms to describe their experiences even though they are expert on the actual experiences.) They would also use any familiarity with the typical format of calls for submissions, the writers of the call, the site the call is posted on, and whatever event (forum, conference, book, etc) the call is for.

Literacy, then, is political and cultural. The academic writer on any given topic is expected to speak the language of academia, to value the same ways of knowing and evaluating things that academics in that topic do, to argue in similar ways and for similar things that the dominant academics in that topic do. [And now I build my stuff on it] This is going to exclude writers who have been and continue to be marginailzed by academics and experts from writing about their reality in general, and the reality of their exclusion in particular. Bad, bad, bad. It also means that understanding an internet call for submissions will require both academic and internet literacies, both of which are based in certain cultural ways of doing things (which sometimes contradict, just to make it harder.)

Many interent resources require a high level of (culturally defined) literacy, including tutorials explaining how to make use of computers and the internet.

Content that addresses disabled people's needs is often lacking, both in terms of format (can we access the site?) and subject matter (are our needs and interests addressed by the site?)

Apparently European portals for disabled people exist! Rehab type programs, assistive tech, education, work adaptation, training, and legal stuff are all there. (I think culture, activism, calls for submissions about disability should all be around so that the portals encourage disabled people to be in discussions about disability. Not sure if those are there.)
This reminds me of the Chinese site that I check on occasion, it's got essays including a review of Design Meets Disability. Warschauer cites European Commissions e-Inclusion stuff from 2001.

Neumann, P. and C. Uhlenküken. 2001. Assistive Technology and the barrier-free city: A case study from Germany. Urban Studies: 38 (2): 367-376. Apparently mentions a database run by Muenster, Germany that has a database and interactive street map for mobility accessibility, including for services like transit, recreation, and medical stuff.
Reminds me a bit of the Ableride site, if that's what it's called? Reviews a la Yelp, but for access information.

Machine translation, already present and common online, is not yet of sufficient quality to reduce the utility of having a common langauge, and it may be a while until this happens. (But it's still a whole lot better than nothing, or than having your different langauge willfully misinterpreted!)

Jim Cummins (1984) draws a distinction between Basic Communication Interpersonal Skills and Cognitive Academic Language Proficiency. Since what I'm talking about is basically the idea that the first should be enough to talk/write about issues affecting your own life and be listened to, I think I need to at least look at his thing. Citation is:
Cummins, J. 1984. Bilingualism and special education: Issues in assessment and pedagogy. Clevedon, England: Multilingual Matters.
Related to this, I want to note that being able to explain the issues one faces does not imply being able to understand an academic call for submissions or being able to write the explanation in the same words an academic would use.

The creative writing on computers in Chinese thing looks interesting to me. He, K and J. Wu. 2001. Innovative research to achive the objectives of eight-year-old Chinese children's ability to read and write: The experiementation of integrating information technology into language literacy education. Unpublished manuscript, Beijing Normal University, China. (WHY MUST IT BE UNPUBLISHED I WANT TO READ IT.)

“In some situations, the Internet's most important role may be to allow people simply to find each other.” (188.) Yes. This. Finding out that we're not alone, organizing, etc. Especially for marginalized minorities whose minority status is probably not heritable. He gives the example of gay people here, I mention disability. Sure, some disabilities are heritable, but not all. Not sure if it's even most.

People who aren't getting as much support for their illnesses (and presumably disabilities?) face to face tend to spend more time in online support areas. This is not even a little bit surprising.

Drawing a distinction between the institution of academia and the organization that is any given university, like Warschauer does, I note that these changes in individual practices I am suggesting both require and help bring about significant changes in the whole institution of academia: academia has been an exclusive and elite institution and I am suggesting it become inclusive and turn the current hierarchy of who is expert on the issues any given group faces upside down- the people who face them know most and should be most listened to.

Woo, time to go through the references to see if any paper/chapter titles look particularly interesting. I'm gonna be picky, though, cause most of the stuff I'm seeing is from 2001 and earlier, which for an internet thing is a bit out of date.

Blom, J.-P., and J. J. Gumperz. 1972. Social meaning in linguistic structures: Code-switching in Norway. In Directions in Sociolinguistics, ed. J. J. Gumperz and D. Hymes, 407-434. New York: Holt, Weinhart, and Winston.

Friere, P. 1994. Pedagogy of the oppressed. 3^rd ed, New York: Continuum.

Stanley, L. 2001. Beyond access. Occasional Paper 2. San Diego, Calif: UCSD Civic Collaborative.

Response on Stem Cell Therapy

This is a response to a question I was asked. Here's the question.

Dear Alyssa, Greetings from India I found your blog while I was researching about special schools in China. I enjoyed reading your posts. I wanted to know your opinion on stem cell therapy for autistic individuals. What are your thoughts? Do you support it? Do you think its useful, not just in terms of autism but also for other neurological disorders. I would love to know your perspective. Love, Avantika

The short answer is that I don't support stem therapy "for autism"  (it makes no sense) but I do for people with conditions where stem cell therapy makes sense (some heart stuff, liver stuff, sometimes Crohns) who are also autistic.

There's a few different opinions that are all part of the long answer.

• There's my opinion on stem cell therapy in general.
• There's science side, is stem cell therapy even relevant to anything about autism?
• There's my opinion on biomedical treatment of any kind "for autism."
• There's my opinion on stem cell therapy for other reasons on people who happen to be autistic.

Anyways.

Stem Cell Therapy in General

My opinion on stem cell therapy in general is that it's still pretty experimental, but there are things it's been shown to work at least some with. It's used for some liver stuff, some heart stuff, some neurodegenerative stuff, osteoathritis, and Crohns. What all these things have in common, so far as I can tell, is that adding new cells that work like patients and doctors expect them to work helps with whatever the patient doesn't want their body doing. 

Some people have ethical issues with stem cell research and therapy for various reasons. As a sciency person, I know that most of those concerns don't even apply in quite a few stem cell areas (adult stem cell lines and umbilical lines have nothing to do with abortion, fetal lines coming from "spare" fertilized eggs after in vitro could become people if implanted but it's also not abortion, and I'm pro-choice anyways.) So I think stem cell research and resulting therapies are really cool, as long as they 1) are working towards a goal that the person being treated supports (not a parent, not a doctor, not a caretaker, the person being treated) and 2) there's scientific reason to believe that it can (help) accomplish the goal. The amount of evidence needed is less for treatments that the person being treated knows are experimental, like as part of a study, and more for stuff that we're saying is known to work. Which level of evidence a person being treated wants before they agree to it (and there has to be consent here) is up to the person.

Relevance to Autism

Going back to what the things being treated have in common, these are conditions where adding new, healthy cells can help with whatever the problem is. Autism does not fit the bill, even a little bit. Even if you hold with the idea that autism is somehow terrible and reducing "symptoms of autism" is the holy grail of treatment, the relevance of stem cell therapies to autism itself is doubtful. Some evidence suggests that we've got extra brain cells and connections in comparison to neurotypical expectations, among other things. 

This isn't a statement about stem cell therapy for autistic people who could benefit for other reasons, like if an autistic person also had Crohns or osteoathritis or any of the other stuff that's getting successfully treated with stem cell therapy, the question would be about relevance to that condition rather than autism.

But no, stem cell therapy is not relevant to autism.

Biomedical Stuff for Autism

Biomedical treatments "for autism" are generally pretty confused about what they're supposed to be treating, how it's supposed to work, and everything in between. Stem cells "for autism" don't look like an exception here. 

At best, such treatments are aimed at reducing discomfort that we have for other reasons (like the fact that autism and epilepsy can occur together, autism and autoimmune stuff can occur together, just by sheer probabilities, unless autism and condition X are not independent (having one affects the chance of having the other) they will occur together for about 1% of people with condition X.) Those treatments would actually help with the condition they're properly meant for, and make autistic people who have that other condition more comfortable. Often, our being in less distress is wrongly taken to mean that we are less autistic, and so people decide that this treatment now reduces "autism." For an autistic person who also has any of the stuff that stem cell therapies are actually good for? The relevant form of stem cell therapy could go here.

At worst, such treatments are actively abusive and have no reason to work. Bleach enemas, chelation, chemical castration, and a lot of other "biomedical" and "alt med" things people do "for autism" go here. If the autistic person in question doesn't have anything for which stem cell therapies are actually relevant, then stem cell therapy may well go here.

Regardless, treatments "for autism" are also rooted in the idea that autism is wrong or lesser, while neurotypicality (or being able to fake it) is ideal. That's directly opposed to the neurodiversity paradigm, so the idea of any treatment "for autism" is not high on my list of good things. 

Rather than trying to make Autistic people be "less autistic," I support giving us the treatment and tools that help us live better lives as Autistic people. If we've got any stuff going on that's causing us problems (I've got asthma, for example,) then treating those problems is just as good an idea for Autistic people as it is for those lacking autism. People tend to prefer feeling good to feeling sick, after all. The problem is when people conflate "feeling better from other stuff" with "less autistic." We're not actually less autistic, and less autistic isn't actually a good goal anyways.

I've talked a bit about what education that's based in teaching us to live well as autistic people could look like, but it's so unusual that finding anything like that is tough. That's also not particularly the point of this answer, but if you're interested, here are a few:

• But AAC Increases Speech!'
• Growing up into an Autistic adult
• Education and Services, by Autistic people, for Autistic people
• More than two options

Stem Cell Therapy (when the person is also Autistic)

I don't see how this is different from stem cell therapy when the person isn't autistic. If someone has a condition where stem cell therapy is actually relevant, them being autistic isn't a counter-indicator.

Notes on The Access Principle

More of "Alyssa reads a thing, and then sie posts the notes sie took."

This time the book is The Access Principle: The Case for Open Access to Research and Scholarship.

Citation is:
Willinsky, John. The Access Principle: The Case for Open Access to Research and Scholarship. Cambridge, MA: MIT, 2006.

 

And off we go!

Willinsksy’s access principle is that “a commitment to the value and quality of research carries with it a responsibility to extend the circulation of this work as far as possible, and ideally to all who are interested in it and all who might profit by it.” (5)

Doing good for a discipline and for other researchers by increasing the accessibility of work and doing well for one’s self by increasing impact both push academics towards open access.

Open Access “opens a new world of learning to those outside the academic realm, to dedicated professionals and interested amateurs, to concerned journalists and policymakers.” (33.)

“The exclusion of women and members of certain racial minorities from scientific education and the scientific professions constitutes not only a social injustice but a cognitive failing. Similarly, the automatic devaluation in Europe and North America of science from elsewhere constitutes a cognitive failing.” (Longino 132.)

That is, even for academics who are not concerned with the justice aspect should concern themselves with exclusion of certain groups from sciences (and other disciplines as well) because it is a failing in how knowledge is created and it reduces the quality of research overall.
Longino, Helen. 2002. The fate of Knowledge. Princeton: Princeton University Press. 132. Qtd in Willinsky 34.

Many academics support a push towards open access scholarship, allowing more people to read (and often, cite) their work. Citation counts and other measures of impact often increase when a journal becomes open access.

There are reports that when a journal moves to an open access model, either delayed or immediate, it may receive a significant increase in submissions- cite ALSO
Lossius and Søreide: Open access publishing: a girder in the success of the Scandinavian Journal of Trauma, Resuscitation and Emergency Medicine. Scandinavian Journal of Trauma, Resuscitation and Emergency Medicine 2011 19:7.

NOT directly from book, but thought of while reading: If editors and organizers value the increase in submissions that open access may bring, open access to calls for submissions is also important. Using the definition from the Budapest Open Access Initiative the only barriers to open access work are those “inseparable from gaining access to the internet itself,” which cognitive access barriers in the calls for submissions are not.

(citation: "Read the Budapest Open Access Initiative." Budapest Open Access Initiative. 2002. Web. <http://www.budapestopenaccessinitiative.org/read>. )

Find Haefeli, William. 2004. Cartoon. New Yorker, July 12, p 83. “Please don't be offended if I consult other sources of information.”

Public access to scholarly work typically adds little or nothing to the online publication costs, but it does increase readership, impact, and name recognition for the journal. (Writing so that everyone can understand calls for submission may be a bit more resource-intensive.)

At any rate, waiting for the [digital] divide to be closed somehow is a poor excuse for the academic community's not doing what it can now do about the inequitable distribution of access to research and scholarship. [Both reading and creating!!!] Critiques of the digital divide in hardware and software lose some of their sting if the authors are doing nothing to ensure that their own contributions are being made freely availale online and not part of an information divide. (112.)

With increasing public access to scholarship, public engagement increases. Ordinary citizens become involved in the process of research, not just reading the results, with the public helping to track the spread of disease and (cite and link Big Think article) analyzing tumor samples.

On the topic of the environment, Fischer writes, “Instead of questioning the citizen's ability to participate, we must ask how we can interconnect and coordinate the different but inherently interdependent discourses of citizens and experts” (45.) If this is true generally for people, the environments we live in, and how best to fix problems within our lives, then it only makes sense that it is still true specifically for disabled people, the environments we live in, and how best to fix the problems within our lives. Rewriting to this specific context, we get. “Instead of questioning the disabled person's ability to participate, we must ask how we can interconnect and coordinate the different but inherently interdependent discourses of disabled people and experts.” In both cases, the supposed experts have much to learn from the people whose problems they claim to be expert in.
Fischer, Frank. Citizens, Experts, and the Environment: The Politics of Local Knowledge. Durham, NC: Duke UP, 2000.

“Enabling people to play a greater part in the research that directly affects their own lives can lead to better science.” (120.)

In astronomy, collaboration between amateurs and professionals has already produced valuable results and valuable observational data which professionals then further analyzed. Non-professionals have also contributed significantly to work in linguistics, lexicography, and botany.

“It may well be that the very independence of scholarship, which adds greatly to its value in the struggle for human rights, has rested for too long on its relative inaccessibility. But academic freedom needs to be based on more than the fact that so few have access to what is being done in freedom's name” (153.)

In arguing that public rights to know and rights to philosophy support the case for open access, Willinsky specifically does not ask scholars to write for the potentially much wider audience they could acquire.[cite here] Under certain circumstances, however, I do. The main take away points of articles directly impacting on people's lives should be summarized such that readers can understand those impacts. Calls for contributions on topics that are about people's lives or directly impact peoples lives should be written so that people can understand what's being asked for and respond.

Want to find:

• Directory of Open Access Journals
• The Effects of Open Access and Downloads (‘Hits’) on Citation Impact: A Bibliography of Studies
• The Core Metalist of Open Access Eprint Archives: opcit.eprints.org/explorearchives.html
• African Journals Online program
• Open Journal Systems

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 gusboyek@student.gu.se Thank you in advance!

Kate.

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.

Open Access (And Thunderclap)

Depending on how well you know me/how long you've followed my blog, you might or might not already know this, but I do research in a few different areas.

One is disability studies. For that, I tend to cite blogs really heavily, partially because I think Disabled voices need to matter and I know lots of Disabled bloggers (plus the publishing cycle on a blog is way faster than that on a journal.) But I do sometimes run into academic journal articles where it would be helpful for me to be able to read it, and then I can't. My university ID gets me access to lots of articles, but not everything.

Another is engineering stuff, sometimes assistive tech from a social model perspective when I'm combining the engineering and the disability, sometimes nanotechnology research, currently including a design project so I can graduate. This uses more stuff that's published in academic journals, so I run into the problem of paywalls and not being able to get articles a bit more often.

Then there's pure math. I'm playing around with Lyness equations right now, letting things be negative. Not much has been done with that, but there's one article that I know exists and that I know lets things be negative. I can't get at it. I'm frustrated. Open access would help.

And yeah, I do think researchers should be compensated for their research. That's not what the money being paid to journals is generally going to, though. Authors send their stuff in for free, so it's not content creators getting paid.

Academic publishing is currently a system where academics aren't always able to get their work to the people who could use it, and the people who would be building on it aren't always able to get at it. It's a problem. Open access stuff is at least a start. (A complete overhaul of the system would be good, really.)

Hence a thunderclap about it. I care about this. Maybe some of you lot do too?

On Technology's Role

I  read "On Institutionalized and Autonomous Access Forms: Toward a Refusal of Pity Infrastructure." As is typical of that blog, I'm not sure how much I understood the actual points the author was trying to make, but it made me think anyways.

I think I get what's being said here, though:

We can start to build communities that do not create singular models of access, but turn access needs into a constant conversation between people. Access needs can become an everchanging process based on persona deliberation.

And at least some of this:

Access and asking about access needs is built into the social patterns of disabled people amongst disabled people. This proves that access need not exist as a reassertion of private technology manufacturers and government bureaucracy.

Here's the thing:  I'm an engineer. I like finding technological solutions to problems. I like when technology can make a job or a process or a life or anything else easier.

What I don't like is when a lack of technology is used as an excuse to discriminate against people, or when a lack of technology is used as the excuse for failing at access. I especially don't like when technology is kept out of the reach of the people who need it most because of profit motivations or discrimination in general.

Before elevators, someone could have made the excuse "we don't have a way to get you up to the second floor" to a disabled person, and it might have even been true. That wouldn't have made it OK. Finding a way to make whatever the person needed be somewhere they could get at it, finding another way to get them to the second floor (there's ramps to the second and third floors in the gym complex, wide enough, smooth enough, non-steep enough that yes, you could take a wheel chair up that.)

When people don't understand the communication of disabled people, or when people don't understand that our actions have a purpose (even if it's a purpose that wouldn't make sense to others,) there can be problems. It depends on the attitude: If they say "I don't understand what you want, but I can understand your no and try stuff till I get it right if you want," that seems reasonable. If they instead decide that because they don't understand, there isn't any communication happening, that's not OK. Finding a technological solution to "we're having trouble understanding each other's communication" is a reasonable thing to try. (Google Translate, much?) Using technology to try to prove that communication isn't happening or using the current lack of a technological solution as an excuse to ignore communication is not OK.

So: The way you look at a problem matters. If you're looking at a problem in a way that is equitable and not oppressive (hard to do!) there may still be questions and problems where a technological solution makes it easier. The lack of technological solution isn't an excuse to do things wrong, but trying to find said technological solution and make it readily available is still cool.

If you're looking at a situation from an oppressive angle, the technology-based solutions you come up with are probably still based in that oppression and that's not OK.

Also:  There not being technology answers to any given access issue (yet?) doesn't keep disabled communities from figuring out ways to do access. Technology that makes it easier for people to do what they've already been doing, that makes it easier for communities that care about access to make it happen as a community? I think that's still worth trying to create, yes. 

I say "if you" here, but this is something I need to remember just as much, if not more, than most of my readers: I'm the engineer. I'm the one who'll be looking at problems and finding technological solutions for them, so I'm the one who's going to have to remember to pay very close attention to my perspective on the problems, to make sure that I'm not basing solutions in the idea of a person being broken or wrong or lesser, or of a culture being broken or wrong or lesser. I'm the one who's going to have to pay attention to, well, who I'm paying attention to for things like problem statements and possible solutions.

Might be a while till I publish Neurodiversity+cross-cultural communication thing

My teachers apparently didn't realize that this is actually original work in a neurodiversity stuff, and that that's a field with not a lot of people. Once they realized that not only was I writing about stuff that's not their field, but I'm actually published in it and was writing new original ideas, they were like "You should try to get that published!"

I pointed out that it was in Chinese, and no USA-based journals for disability studies stuff that I know of publish articles in Chinese. Also, the articles I've written so far aren't that long- they're like 1200-1600 characters each. If I combined them, I might be into the length range that's reasonable for publication, but they're still in Chinese.

So now they might be looking into how one goes about publishing academic work in China? Which means that I'll be waiting to put it up on my blog until I know what's up with that, since academic journals usually don't want to reprint blog posts. If it goes up, I will put a copy on Academia.edu, which people can get at for free, and I'll see if I'm allowed to put the text here too. But since it's written in Chinese, I figure I have a better shot at getting people who read the language to see it if the initial place of publication is, you know, not blocked in China. Not everyone has the software, computer know-how, or money to get around the great firewall, and not everyone is willing to cite blogs, so when it comes to bringing new things into academia, publishing in academic channels can be useful.

Yes I'm a bit of a pragmatist sometimes. Also, I probably should translate the thing into English at some point. Chinese academic articles require an English abstract anyways (imperialism much?) and a decent number of articles are actually in English (again, imperialism much?) There's also a decent bit of Chinese academia citing English-language stuff, but I don't see much USA stuff citing things that aren't written in English. USA, why not? Why do we not cite stuff from other languages much? Is it just that a lot of us can't actually read other languages? /meh.