Notes For Anyone Writing About Me

Guide to Writing About Me

I use they/them pronouns.

I am an Autistic person, not a person with autism.

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: Zisk, Alyssa Hillary. "Post Title." Yes, That Too. Day Month Year of post. Web. Day Month Year of retrieval.

APA: Zisk, A. H. (Year Month Day of post.) Post Title. [Web log post]. Retrieved from http://yesthattoo.blogspot.com/post-specific-URL.

Showing posts with label Reading Notes. Show all posts
Showing posts with label Reading Notes. Show all posts

Thursday, May 18, 2017

Alyssa Reads Critical Studies of the Sexed Brain

This is another one I read for neuroethics. I was considering using this article for my presentation on a neuroethics related topics, but that didn't happen because someone else split off my too-large group and it wasn't too big anymore. We actually wound up talking about a medication used to treat addiction ... that can itself be addictive. Fun times. So, here's some of my thoughts from reading Critical studies of the sexed brain. 


“They suggest that we work and talk across disciplines as if neuroscientists were from Mars and social scientists were from Venus, assigning the latter to the traditional feminine role of assuaging conflict” (247). sigh I am not surprised that some scientists think of social sciences that way.

Brain plasticity+ identity formation in intersex people, brains vs. genitals. That's going to be interesting. By which I mean, I have concerns. I have friends who are intersex. I know people who do intersex activism. And I know intersex people who concluded that intersex and/or nonbinary is their gender identity rather than picking one of the two binary genders. Hope the author isn't assuming a gender identity must be one of man/woman. Heck, mine isn't that and as far as I know, I'm not intersex.

Oi at calling autism a disease. It is a neurodevelopmental disability [or a neurotype, that's a good word and also let's remember what I'm saying when I say disability - the social model of disability is a thing.] Also I know the author found neurodiversity stuff because the article comes up when I search the journal for neurodiversity, what the heck? I don't expect to hear it called a neurotype in anything done by neurotypical(-passing) academics but really? Disease?

Ok, gender in the brain as a result of plasticity, that's going to be interesting – “reflect gendered behavior as learned and incorporated in a social context” is a thing, but please, please don't let this turn into “male socialization” for trans women or “female socialization” for trans men, or either of the above for nonbinary folks. The socialization of “consistently mistaken for X while actually Y” is not the same as the socialization of “X.” Ok, individual differences are a thing. That's good. “Plasticity arguments are extremely interesting as they wage war against both biological and social determinism, reductionism, essentialism, and other -isms.” Phew that's not the socialization argument I was worried about, I don't think.

Does she mean “cishet” by “normal people”? (Cishet=cisgender, heterosexual.) I appreciate the quotation marks around “normal people” but there probably is another word for what she means and using it would be nice.

Now we have one of my rage buttons. All caps time!
OH MY GOD STOP CALLING NEURODIVERSITY AN ASPERGERS THING. THE ANI PEOPLE WERE CLASSIC EVEN IF THEY TALK NOW, AND ALSO DIAGNOSED BEFORE ASPERGERS WAS IN THE DSM. MEL BAGGS IS NONSPEAKING. AMY SEQUENZIA IS NONSPEAKING. I'M CLASSIC EVEN THOUGH I USUALLY TALK. STOP. STOP. SERIOUSLY THE ROOTS ARE OLD ENOUGH THAT ASPERGERS WASN'T A DIAGNOSIS YET WHEN A LOT OF OUR FOLKS WERE DIAGNOSED, WHICH MEANS THEY WEREN'T DIAGNOSED ASPERGERS. THEY ARE NOT ASPERGERS, WHICH IS ALSO NOT A DIAGNOSIS ANYMORE. (maybe was when written?)

Intersex activist history! I knew about unwanted surgery, gender role training, and folks wanting their own intersex bodies back. I also know someone who was put on unwanted hormones. What are the results of Diamond getting so lauded while speaking in terms of brain sex, though? It's still the language coming from the people who try to enforce the man/woman dichotomy. What are the results of using the "sexed brain" discourse while not necessarily fitting in the binary? 


1 Walker, N. (September 27, 2014). Neurodiversity: Some basic terms and definitions. Neurocosmopolitanism: Nick Walker's notes on neurodiversity, autism, and cognitive liberty. [blog post] Retrieved from http://neurocosmopolitanism.com/neurodiversity-some-basic-terms-definitions/ is a good explanation of the neurodiversity related vocabulary I tend to use when thinking about neuro stuff.

Thursday, May 11, 2017

Alyssa Reads Memory Blunting: Ethical Analysis- suffering and authenticity

I read "Memory Blunting: Ethical Analysis" by the President's Council on Bioethics, excerpted from Beyond Therapy: Biotechnology and the Pursuit of Happiness (2003) and appearing in Neuroethics: An Introduction with Readings, edited by Martha J. Farah. I did so because I am taking a neuroethics class and we're supposed to show that we're thinking about neuroethics stuff at least a bit outside class. Also because I'm super-interested in how neuro-stuff (especially neurodivergence but really all things neuro-) is represented in fiction (especially young adult speculative fiction.) I'm pretty much chucking my notes (drawn parallels, expressions of annoyance, and the occasional "OK that's legitimate") on my blog because as important as a lab notebook is, I like notes that are typed and searchable. I started with some connections to Allegiant, then some thoughts on collective effects of blunting trauma, and then cognitive liberty. Now here's suffering and authenticity.

The concerns about what we might do to others minds if it were an issue of what person X does/chooses for person X, not what we are choosing for others. The concern seems to be about changing someone's true self, so suffering and authenticity come in again, just like cognitive liberty. These two seem frequently connected to me. If we recognize that people get to define their own "true selves", we don't get to moralize over which experiences are real and true anymore, which kind of kills the "not their true self" argument. Which is an argument I'm really not a fan of, especially considering which experiences it tends to be applied to.

This quote ... gives me the noble suffering/virtuous suffering sort of feeling, where whatever positive you might (not will, might) drag from the hell you go through means you shouldn't try to avoid that hell or save others from going through it.
Or will he succeed, over time, in 'redeeming' those painful memories by actively integrating them into the narrative of his life. By 'rewriting' memories pharmacologically, we might succeed in easing real suffering at the risk of falsifying our perceptions of the world and undermining our true identity. (90)
The version of a person that went through more bad things isn't automatically more real. The version of a person that's suicidal from trauma isn't automatically more real than the version of a person that takes medication to not be suicidal. Our choices define us, not just what we've been through, and using chemicals to get the parts of our histories we never chose to back the heck off? That's not less real. Suffering isn't the only way to be real. Enough of the noble suffering narrative. Enough.

Now to bring back a quote that I also talked about with cognitive autonomy:
And yet, there may be a great cost to acting compassionately for those who suffer bad memories, if we do so by compromising the truthfulness of how they remember. We risk having them live falsely in order to cope, surviving by whatever means possible. (92)
  (Survival is resistance etc)

And the concerns about what happens if we take out everything difficult? Those take a huge slippery slope argument, and not the kind where we've seen from experience that most people stop early or don't stop at all (destructive obedience is one of those.) Trauma is not the same thing as everything difficult in a person's life. Having to spend a lot of time and effort on reading and writing in order to become a good writer is not the same as witnessing a murder or being mugged or being a victim of abuse. One of these things is a choice: we're not under any obligation to become good writers. The other's aren't choices. They're things that happen to us. How we deal with the results is at least partially a choice. (Not entirely. Especially when, due to technological or social constraints, dulling the pain while working through it isn't an option.) There is plenty of opportunity for hard work and achievement without forcing others to keep horrors in their heads for the sake of ill-defined authenticity.

Tuesday, May 9, 2017

Alyssa Reads Memory Blunting: Ethical Analysis- cognitive liberty

 I read "Memory Blunting: Ethical Analysis" by the President's Council on Bioethics, excerpted from Beyond Therapy: Biotechnology and the Pursuit of Happiness (2003) and appearing in Neuroethics: An Introduction with Readings, edited by Martha J. Farah. I did so because I am taking a neuroethics class and we're supposed to show that we're thinking about neuroethics stuff at least a bit outside class. Also because I'm super-interested in how neuro-stuff (especially neurodivergence but really all things neuro-) is represented in fiction (especially young adult speculative fiction.) I'm pretty much chucking my notes (drawn parallels, expressions of annoyance, and the occasional "OK that's legitimate") on my blog because as important as a lab notebook is, I like notes that are typed and searchable. I started with some connections to Allegiant, then some thoughts on collective effects of blunting trauma. Now here's cognitive liberty.

The concerns about what we might do to others minds if it were an issue of what person X does/chooses for person X, not what we are choosing for others. Cognitive liberty. We don't seem to have a coherent definition of the self, and autonomy is complicated, but there is definitely a thing where a person either is or is not making the decisions about interventions taken (or not taken) on their own minds. Also on how folks define their own "true selves." What about who you are is important to you? Not what's important to me about who you are. Of course, that would stop us from moralizing over what experiences other people have are real and true vs. somehow fake. Changing one's own cognition by one's own choice isn't as acceptable as I think it should be. 
And yet, there may be a great cost to acting compassionately for those who suffer bad memories, if we do so by compromising the truthfulness of how they remember. We risk having them live falsely in order to cope, surviving by whatever means possible. (92)
Again, we do to them. Not, we offer them the option. Do we think we know better than them what's right for them? That way lies all sorts of abuse "for their own good." And ... do we really think everyone would choose to dull the pain of a memory or to forget it (remember also that those two things are not the same.) Because I don't think that. I think lots of people would, but not everyone. Despite (because of?) my arguments about cognitive autonomy leaning towards letting people choose to blunt the trauma,  I want the right to remember in my relatively unchanged way. It's just that the arguments run towards why everyone needs to be doing it that way, and I don't believe everyone needs to be remembering that way. I think enough people would choose to remember that we'd get whatever collective benefits the memory would provide, even if we let people choose to dull their pain. Not that I think the supposed benefits are nearly as strong as seems to be argued. Intentional ignorance is already a thing.

Thursday, May 4, 2017

Alyssa Reads Memory Blunting: Ethical Analysis- collective effects

I read "Memory Blunting: Ethical Analysis" by the President's Council on Bioethics, excerpted from Beyond Therapy: Biotechnology and the Pursuit of Happiness (2003) and appearing in Neuroethics: An Introduction with Readings, edited by Martha J. Farah. I did so because I am taking a neuroethics class and we're supposed to show that we're thinking about neuroethics stuff at least a bit outside class. Also because I'm super-interested in how neuro-stuff (especially neurodivergence but really all things neuro-) is represented in fiction (especially young adult speculative fiction.) I'm pretty much chucking my notes (drawn parallels, expressions of annoyance, and the occasional "OK that's legitimate") on my blog because as important as a lab notebook is, I like notes that are typed and searchable. I started with some connections to Allegiant. Now here's thoughts about the collective effects of forgetting, as worried about by the authors (and as I tend to think we deal with even without dulling memories pharmacologically.)

I have a concern about this supposed legal argument against using beta blockers or similar medications to reduce the emotional impact or trauma from publicly important events. (The given example was a terrorist attack. I can ... kind of tell this was written not too long after 9/11.)  The idea is that it's important to have some witnesses remember the event accurately. There's a problem: I remember from my introductory neurobiology class that when a memory is super emotional, we feel quite certain of our recollection ... but that we can still be completely wrong in our memory of what happened. Ask people where they were on 9/11, or when the space shuttle exploded, and some will tell you they were listening to or watching other events that didn't happen on those days. Sometimes didn't even happen that time of year. But we are confidently wrong! So as useful as accurate recollection would be for legal purposes, maintaining the traumatic impact on the witnesses doesn't make accurate recall happen anyways. Also, eyewitness testimony is notoriously unreliable to begin with. This is a bad argument because the thing we're claiming to want to preserve already doesn't exist.

On that note, I wish the authors had said something more about the social and personal effects of blunting our collective traumas. I'm not entirely convinced that leg of the argument is going to hold either. After all, I'm a Jewish (and Queer, and Disabled) descendant of Holocaust survivors, and I know how we're never supposed to forget. I'd be a lot more inclined to buy into the value of collectively remembering and the consequences of forgetting if we'd stopped having genocide or deciding that certain religions are inherently more dangerous or lesser. But we didn't. These things all still happen. The things we're claiming to want to prevent already happen with our supposed preventative in place, and that means I don't trust the argument.

The murder witness example actually does concern me. "Yes, I was there. But it wasn't so terrible." (91). We don't want murder to be thought of as not so terrible. I know we don't want that because sometimes it is already considered not so terrible. See also: "mercy" killings of disabled people by the folks who are supposed to take care of them. It already just depends on the choice of victim, and that's terrifying. I don't want the idea of murder as not so terrible spreading any further than it has. I want it gone. I want all the murders being recognized as being as bad as they are.

I also have issues with the juxtaposition (and sometimes what seems like conflation) of giving a victim relief and medicating away (or relieving, I suppose I should use the same language for each) the guilt of perpetrators. Those are not morally equivalent. Victims and attackers or abusers are not the same. When we're talking about a mutual conflict, as in the case of war (the most talked about cause of PTSD, but far from the only one), there may not be a clear aggressor or victim. There also may be. It depends on what's going on, really (and remember how often the military is painted as the only way out for people in poverty, at the same time we remember the atrocities soldiers often commit.) Still, when we're talking about accidents and survivors of terrorist attacks, there's clear innocents. (Not "perfect victims" in the sense that they never did anything else even slightly wrong, but innocent in the sense that they didn't choose what happened to cause the trauma.)

Friday, March 31, 2017

Alyssa reads: Ethical Analysis of Neuroimaging in Alzheimers Disease


Anyone else bothered by the consistent framing where we demonstrate the significance of disability related research by citing a significant/increasing “public health burden” and the money spent on care? Anyone? (Fellow citizens, that is your money too.)

Now we're going to focus on ethical issues around imaging/detection. (Which, I note, remain ethical issues surrounding imaging/detection whether or not you talk about public health burden and money!!!)

The “Roles for current imaging capabilities” section seems to take it as a given that identifying risk factors (for this thing we really can't treat that well) in order to predict who's going to get Alzheimer’s before they get it is important. I would have expected that to be one of the ethical issues to discuss: do we identify folks who are going to develop Alzheimer’s even though there's not really a way to change this? (And that's at the 100% certainty level, which, to be clear, is not current reality. We can't predict who will/won't experience this. We can't predict what cognitive changes a person will (or won't) experience as they age with anywhere near that level of certainty.)

(Yes, I think with something that would fall under the neurodiversity paradigm. Also cognitive liberty or freedom – people being in charge of their own minds while also valuing diversity on a societal level! I'm still inclined to treat neurological things that will eventually kill you as things I would like us to know how to change or prevent, because death. And Alzheimer’s will eventually kill you. Cognitive freedom also goes with “people can choose what to do with their own minds” and “not dying of dementia” is a common preference, let us science so people can make that choice.)

Ah, yes, good, stigma is getting addressed.
  • Predictive imaging may expand the pool of disease to people who are much younger, and therefore expand the pool that is stigmatized.
  • Both earlier prediction and stigma have the potential to reduce quality of life, including autonomy and the privilege to drive, and other daily functions.
  • There may be medical discrimination against people at risk, for example, with respect to eligibility for organ transplantation. (4)

My preference is for not stigma at all. Expanding the stigmatized pool is not doing this. Neither is reducing it. Both of those are justmoving the line of acceptable minds around. Nope. (Still don't like shoving people unwittingly or unwillingly into a stigmatized population.)

It's important to point out the quality of life issues where being in a stigmatized group, all on its own, causes problems. Because it does.
 
Organ transplant discrimination is a thing. I might not be able to get an organ (autism, people get rejected for that all the time, sometimes even when there's a family member willing to donate who isn't offering this for anyone else re: kidney or liver.) 
 
I think we need to work on the stigma in addition to working with the reality that it currently exists.

I appreciate that “Scan everyone who wants a scan” is one of the considered options. It gets the shortest discussion (probably because “do for person X what person X wants” isn't that complicated) and the issues brought up there are common to the other groups as well. (Who should have access to the results of testing is not only a question when the test was done without medical indication. It might have different answers depending on the level of medical indication for the test. I'm very much inclined towards “The person who had the test decides who even knows the test took place, and similarly who gets results.” It's hard to coerce test results out of someone if you don't know there's anything to coerce. The tricky thing is to make sure employers can't coerce the test itself.) Unequal access remains an issue, but let's not pretend it's a non-issue for any of the other options.

I'm betting the impact of results on personal liberty and similar closely resemble the impacts of other known cognitive disabilities. Just a hunch.

OH MY GOD. NO. “the greater predictive power combined with the growing number of people with AD might be the brick that breaks the back of the current health care system. (6)” NO. YOU DO NOT PUT THE BLAME FOR OUR MESSED UP SYSTEM EVENTUALLY BREAKING ON SICK OR DISABLED PEOPLE. NO. NO. NO. YOU. DO. NOT. DO. THIS. Go yell at insurance companies and congresspeople instead. NO. I hate you when you do this nonsense with autism and I hate you when you do it with AD and just generally hate it when you do this with the people who get screwed over by the current system that really, really wants everyone to be abled and to get briefly and treatably sick in ways that follow the textbook. And you know, this idea that we're a burden on some system always, always gets used to justify measures that reduce our personal liberties. When you write things like this, you are part of the stigma problem. Stop it.

(Try instead “The current health care system is designed for XYZ and not ABC. Given ABC, changes are needed.”)

The incidental findings question. Yes, protocols being decided on for these before the imaging. (Ulysses contract connection?)

“Much remains to be learned about functional anomalities.” (8). Well. Yes. We only seem to study this stuff when there's a perceived deficit. If it's worked for the person their whole life, why would we have noticed anything? [Hi, Galton the eugenicist deciding not totake issue with the lack of a minds eye because it seemed most commonin “men of science.” We're biased as heck about what unusual things we decide are problems and what unusual things we decide to study like the people who have them are objects.]

Wednesday, February 15, 2017

Alyssa Reads Memory Blunting: Ethical Analysis -- Divergent Thoughts

I read "Memory Blunting: Ethical Analysis" by the President's Council on Bioethics, excerpted from Beyond Therapy: Biotechnology and the Pursuit of Happiness (2003) and appearing in Neuroethics: An Introduction with Readings, edited by Martha J. Farah. I did so because I am taking a neuroethics class and we're supposed to show that we're thinking about neuroethics stuff at least a bit outside class. Also because I'm super-interested in how neuro-stuff (especially neurodivergence but really all things neuro-) is represented in fiction (especially young adult speculative fiction.) I'm pretty much chucking my notes (drawn parallels, expressions of annoyance, and the occasional "OK that's legitimate") on my blog because as important as a lab notebook is, I like notes that are typed and searchable. This part is just the connections I've drawn to Allegiant. More later.

The council starts by asking when we would want to reduce the emotional impact of an experience, and why we should/shouldn't in a given situation. Definitely good questions to consider.

These questions remind me of the ending of Allegiant. We have the protagonists wiping the memories of everyone at a government agency in what boils down to self-defense -- the agency was going to do the same to their entire city "experiment." Not that the experiment was particularly experimental, nor was it particularly based on how genetics actually works, though it was certainly eugenic as all heck. So here we get memory wipe as government control over a eugenic project and as self-defense against said government control.

We also see individual level decisions about memory elimination: Four brings a vial to the city with the plan of using it on one of his parents, who are leading opposing factions in what has become a civil war. He believes that if one of them will stop, so will the fighting as a whole (and then maybe the government won't memory wipe the entire city.) He gives his mother a choice instead of using this vial (he doesn't like memory wipes as an act of war/control/defense/greater good) and this winds up working. She agrees to leave the city.
Or Peter: He is cruel. He knows it. He wants to change. He knows people are the product of their experiences and choices to enough of an extent that he'd have a hard time doing this (and therefore just ... wouldn't) without the aid of wiping his memories. He wants to forget himself. Interestingly, he's the only individual-level memory wipe that we see go through. He forgets himself. In the epilogue, we find out that he's still not the nicest of people, but he's not the person he was before, either. He did make a (slightly) different self, and the difference matters. (Things like not stabbing rivals in the eye while they sleep are just slightly important.)

Four/Tobias, again. After Tris dies, he takes a truck and goes into the city with a vial of the memory serum. His friend Christina stops him, because "The person you became with her is worth being. If you swallow that serum, you'll never be able to find your way back to him." And with eliminating the memory entirely of who he had been and what he had done, I even think I might buy this argument. I will, however, note that this would be a complete elimination of memory. This isn't blunting the emotional impact, making a thing you can remember be less traumatic to recall. This is making the event gone, like it never was, instead of softer, so you can look at it instead of needing to bury it. 
And why do I read and understand the neuroethical arguments in dystopian science fiction?

Maybe it’s something you have to be Autistic to see, but all of their storytelling is 
     rhetoric.
Every writer is making a narrow and overly specified claim about
the nature of social pressure, taboo, deviance policing, human fulfillment, and
the methods by which a person located in a certain sociological position might resolve
     the needs inherent in their system.
When I read, this is what I examine. A writer’s inability to fully represent society
is simply a way of stating their warrants to me, and the individual scenes carry
not only emotional value, but grounds for the conclusions drawn in the depiction
of the change in the main character’s state. All of your fiction is an argument about a
     time and place. (Monje 29)

That's why.

(That's also from The Us Book, which I read and which you should read. Specifically, it's from "Reintroducing Art to the House of Rhetoric.")

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.

Tuesday, April 21, 2015

"The Myth of Clinical Judgment" notes

The next episode of Alyssa reads a thing and shares notes is for "The myth of clinical judgment" in the Journal of Social Issues. Citation:
Biklen, Douglas. "The myth of clinical judgment." Journal of Social Issues 44.1 (1988): 127-140.

Biklen notes that people with have historically faced exclusion from education, social rejection, limited physical access to society, and segregation within institutions, and that typically people facing such treatment would be considered a marginalized minority.
“Yet the more common tendency has been to view people with disabilities as (a) victimized by a disabling condition and (b) in need of treatment-- not of rights.” (128)

Officially, the appropriateness of educational and residential treatment, placement, and supports for people with disabilities is considered a matter for professional (clinical) judgement.

“The more severe the disability, the greater the likelihood that the person will be regarded more as a “patient” than as an object of discrimination. Indeed, identification as a patient would seem to preclude identification or status as an oppressed minority.” (128)
Note (from me, not Biklen) also that this still presumes a way of judging a spectrum of severity, from less severe to more severe. However, any such judgment will be socially constructed and is based against what society expects people to be able to do and how society expects people to look, move, and act.

Professions such as special education, psychology, and rehabilitation for people with disability work through individual assessment, diagnosis, and placement. However, the available options for professionals to place people with disabilities in need to be considered.

Biklen notes that the US government policy has been to avoid placement of people with disabilities in separate classes or schools without demonstration of benefits from the segregation and evidence that integration is not possible, not by administrative concerns such as equipment, specialists, or specialized programs.

“Educators expectations for student performance appear greater for students involved in useful and age-appropriate (and more integrated) rather than nonfunctional (and potentially more segregated) activities.” (132)
Oh hi, presumption of competence showing up more when we're not segregated.

In AY 1982-3, 68% of all children with disabilities were primarily educated in regular classrooms, 25% in separate classes within the regular education building, and 7% in separate schools or other environments (home/hospital) (U.S. Department of Education, 1985, p. 36.)
However, classifying by type of disability, we find that learning disabilities and speech disabilities are typically included while all other groups are more likely to be segregated.

State by state variation in segregation for students labeled with intellectual or emotional disabilities, as well as with multiple disabilities has been extremely wide. Because of the reality that state of residence has an extremely large effect on placement in a mainstream or segregated school, Biklen questions the assumption that placement is done by clinical judgment, despite the claim of clinical judgment. State funding for private school or institutional placement is a strong indicator of actual placement, as do admissions tests or lack thereof.

It seems that people with more severe disabilities get even greater benefit from integration and access to the community than people whose disabilities are considered more “mild.” At least, in terms of how professionals define improvement and benefit, but I'll take it because it favors “stop segregating people and claiming it's for their own good, dagnabbit.”

When examining patterns of residential placements and institution closure, factors such as Medicaid fund use, court oversight, bureaucratic concerns, jurisdictional disputes, public opinion towards people with disabilities, federal funding, availability of alternative placements, pressure to convert institutions for people with disabilities into prisons, and pressure from advocacy groups were found to have a greater effect than professional judgments.

Despite the professional authority supposedly in charge of many life aspects for people with disabilities, including who lives in group homes, who lives in instutions, and who is supported living in the community, the influence of other forces tends to have more importance than said medical/professional judgments. However, the primary factors still aren't the choices of the people with disabilities themselves.

“The solution to the problem of clinical judgement being overwhelmed by nonclinical forces is not more, better, and therefore more influential clinical judgement. Rather, the problem is in the current model of disability services, which treats questions that are both political and professional-- such as where and how people shall live or be educated-- as if they were purely professional ones.” (137)

“The conditions faced by people with disabilities are those that plague other minorities: social isolation, insufficient and unequal treatment, economic dependency, high unemployment, poor housing, and an unusually high rate of instutionalization. It serves the interests of neither professionals nor their clients-- indeed, it perpetuates a myth-- to ignore people's need for political and economic changes while offering them only clinical treatment. This seems particularly wrong and harmful when the treatment itself becomes an extension of political and economic disenfranchisement. Put another way, people with disabilities are more likely to achieve increased self-determination, real choice, and power if they cease being defined as clients whose future rests in the hands of professionals, and are instead recognized as a minority group.” (137.)



Wednesday, February 11, 2015

Democratizing Innovation notes

I actually read Democratizing Innovation a while ago, having reviewed it back in 2013. But I realized that I hadn't put my notes up yet (just a review) so here they are. You can get the book for free as a pdf at the authors website.

“I first ask them how satisfied they are with their backpack. Initially, most say, “It's OK.” But after some discussion, a few complaints will slowly begin to surface (slowly, I think, because we all take some dissatisfaction with our products as the unremarkable norm.)”
But there are still a bunch of students who decide to make some sort of change to their backpack to make it at least a little better.

“adding more beta testers... increases the probability that someone's toolkit will be matched to the problem in such a way that the bug is shallow to that person.” (Raymond qtd in von Hippel.)
That is, adding more people who look at a problem increases the chances that the solution will be simple to someone. 

“The assets of some user will then generally be found to be a just-right fit to many innovation development problems.”

parallel between user-innovator and scholar-activist?

Userinnovation.mit.edu

In the early days of computing, it was common to freely share software and modifications to it. Almost as soon as the first firm restricted access to source code, counters including the General Public License started appearing. Some people started calling these “copyleft.”

hacker culture as an anarchist thing?

Conventional economic language talks about producers and consumers, supply and demand, but Weber notes that “the open source process scrambles these categories” (qtd in von Hippel) as users become part of the production process. He also suggests this integration could occur in other areas.
In open source, users are able to make complicated products themselves, like Firefox and Linux. (A user is kind of like a consumer, but it's a word that still works when the user is also the one making the thing.)

Experts in many fields form interest groups and informally help each other, freely revealing information in ways similar to that of open source processes. (von Hippel.)


Amabile, T. M. 1996. Creativity in Context. Westview.
Antelmon, Kristin. 2004. “Do Open Access Articles Have a Greater Research Impact?” College and Research Libraries 65, no 5: 372-382
Christensen, C. M. 1997. The Innovator's Dilemma. Harvard Business School Press.
Morris, A. D. and C. McClurg, eds. 1992. Frontiers in Social Movement Theory. Yale University Press.
Harhoff, D., J. Henkel, and E. von Hippel. 2003. Profiting from Voluntary Information Spillovers: How Users Benefit by Freely Revealing Their Innovations.” Research Policy. 35, no 10:1753-1769.
Mishina, K. 1989. Essays on Technological Evolution. PhD Thesis, Harvard University.
Von Hippel, E. 1976. The Dominant Role of Users in the Scientific Instrument Innovation Process. Research Policy 5, no 3: 212-39


Wednesday, February 4, 2015

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. 2nd 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.

Tuesday, February 3, 2015

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!

Monday, February 2, 2015

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. 3rd ed, New York: Continuum.

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

Monday, January 26, 2015

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