Aaron Swartz was Right!

The current state of academic publishing is in need of big changes. Academic authors are signing over copyrights to the publishers who in turn charge universities exorbitant  fees for access to the work. The publishers have become bottlers of knowledge instead of disseminators of knowledge, releasing to the highest bidders and blocking all others from access. Aaron Swartz  simply decided it was time to take action.

“Those with access to these resources—students, librarians, scientists—you have been given a privilege,” he wrote. “You get to feed at this banquet of knowledge while the rest of the world is locked out. But you need not—indeed, morally, you cannot—keep this privilege for yourselves. You have a duty to share it with the world. And you have: trading passwords with colleagues, filling download requests for friends.”

Aaron Swartz was a computer programmer who was involved in the development of the web feed format RSS (Rich Site Summary), which includes full or summarized text. RSS feeds can be subscribed to and readers can receive updates or new posts from their favorite web site(s). Aaron also was involved in the creation of Creative Commons (CC), a non-profit organization devoted to expanding the range of creative works (articles) available for others build upon and to share. Creative Commons has released several copyright-licenses known as Creative Commons licenses free of charge to the public. The campaign Stop Online Piracy Act (SOPA) was founded by Aaron in 2010. All of this and more from a young man born in 1986. The basic premise of much of Aaron’s work was that “Information was power, but like all power, there are those that who want to keep it for themselves…” Aaron Swartz was arrested in 2011 for making academic journals available to anyone who wanted to read them. The story of his arrest was covered by the media. Federal Prosecutors charged him with wire fraud and violations of the Computer Fraud and Abuse Act, carrying a cumulative maximum penalty of 35 years in prison. January 8, 2011 Aaron’s body was found dead in his New York apartment. In June 2013, Swartz was posthumously inducted into the Internet Hall of Fame.  The above quote is taken from article about Aaron Swartz by Peter Ludlow, professor of Philosophy at Northwestern University. You can find the complete article here: http://m.chronicle.com/article/Aaron-Swartz-Was-Right/137425/

Interdisciplinary history of sterilization in 20th century Canada by Erika Dyck

An interdisciplinary history available for pre-order (to be published in November) from the U of T Press is University of Saskatchewan medical historian Erika Dyck’s

FACING EUGENICS: REPRODUCTION, STERILIZATION, AND THE POLITICS OF CHOICE

Cover art by Nick Supina III

Living Archives on Eugenics in Western Canada team members, Professor Erika Dyck (author) and Nick Supina (artist) demonstrate their skill and years of work in this upcoming publication.

For more information about the book and how to order go to the original posting here: http://osgoodesocietycanadianlegalhistory.blogspot.ca/2013/06/interdisciplinary-history-of.html

Erotica For Everybody?

It would seem that erotic images really do sell and that they infiltrate our society from all directions.  Aside from the obvious venues for erotic images and films, pictures of handsome individuals in provocative poses are plastered all over our cities and flashed, it would seem, at every conceivable opportunity both on the internet and on television.  However, images are for those who can see, which means that a substantial population is “spared” this constant barrage of depictions.  Questions of morality aside, pornography sells!  In fact, Lisa J. Murphy’s Tactile Mind is one example of how erotic imagery continues to fill newer and more numerous social niches.  Murphy’s Tactile Mind is “a handmade thermoform book consisting of 17, 3-D tactile photographs on white thermoform plastic pages with the visual image and descriptive Braille accompaniment” (see website).  The book is sold for an extravagant $225, but single pages can also be purchased for $25 a page.  Another example of such “niche-filling” is “Porn for the Blind,” which is

a website which purports to offer sexual stimuli for blind people over the internet.  The website is composed of a white background with a list of links to mp3 sound clips of pornographic content contributed by volunteers.  A ‘translator’ will watch preview clips of videos and give a play-by-play of the events.  Contributors are not allowed to use sexual words when describing existing videos and must give purely clinical descriptions of the events. (see citation)

Although, on the one hand, it might be argued that erotic images are inappropriate even in socially sanctioned contexts, it does seem a bit paternalistic to do those who can only read braille a moral favour by denying them access to erotic material.  From my understanding, the two examples I provided above are quite censored as it is.  The images in Murphy’s book lack faces and are featured only in single poses while the mp3 descriptive recordings do not use sexual words in their descriptions.

There is certainly a debate over the appropriateness of pornography (see Natalie Purcell’s “Feminism and Pornography: Building Sensitive Research and Analytic Approaches”), but at least now it’s everybody’s discussion!

Mental Illness and Leadership?

Below is a link to controversial interview in Maclean’s Magazine with Nassir Ghaemi about his new book A First-Rate Madness: Uncovering the Links Between Leadership and Mental Health.

http://www2.macleans.ca/2011/08/09/the-benefits-of-mental-illness-and-why-perfectly-normal-leaders-are-the-wrong-people-for-a-crisis/

Can we protect the privacy of research subjects without blocking access to information?

Several members of the Living Archives on Eugenics in Western Canada project have experienced some of the problems of attempting to get access to personal information from government institutions that create barriers to, or outright denials of, access to information by  citing the need to protect the privacy of individuals to whom the information relates. All privacy legislation in Canada, whether federal or provincial, defines “personal information” as being information about an identifiable individual. There are many simple ways to alter records containing personal information, depending on the type of record and type of information, and this can and should be negotiated with researchers, many of whom have already factored privacy protections into their research as part of the ethics approval process.

An interesting piece in last week’s New York Times focused on just these issues, although in the US. New rules affecting researchers dealing with sensitive medical information will offer the necessary privacy protections to subjects who participate in studies or whose information is otherwise made available to researchers. At the same time, researchers are concerned that the new rules will result in limited access to various types of valuable data, such as census data, marketing research, and various types of statistics. Typically, denials of access to such information are based on the premise that even when personal identifiers are removed from the information, individuals can potentially be identified by matching data obtained from other sources. While this may certainly be a legitimate issue, common sense should prevail when dealing with aggregate data, or with historical documents. Unfortunately, in Canada and the US alike, common sense doesn’t always factor into decision making, since denying researchers access to information is often the result of risk management by the institution holding the information, not wanting to be held liable for making mistakes. Usually, the best approach is to draft a research agreement between the researchers and the institution, shifting the responsibility for protecting privacy from the institution to the researchers. However, this depends entirely on the willingness of institutions to assist researchers in the first place. If they are not willing to assist in this way, it may be up to researchers to resort to using standard access to information processes to obtain information for research purposes.

It is in this context that we should remember that access to information and protection of privacy go hand in hand, and both aspects should be considered together. Information relating to identifiable individuals belongs to those individuals, but information that is not identifiable belongs to the citizens, not to the government. And researchers are finding increasingly innovative ways to utilize information and transform it into new types of data that can be used to provide better government services, all with little to no risk of breaching anyone’s privacy when done properly. Institutions should be trying to find more innovate ways of getting such data into the hand of researchers, instead of creating unnecessary roadblocks.

$500,000 to Build Stronger Communities?!?

That’s the pledge made by AVIVA Canada, an insurance provider who has decided to show that they have heart by putting out a cross-Canada call for projects that will improve local communities.  The top 25 projects will have the opportunity to share in a cool half-million dollars.

The competition began on October 13th with the first round of submissions.  A total of three submission rounds were held and the top 20 entries, based on a tally of votes submitted by anyone caring enough to join the website moved on to the semi-finals.  These top 60 entries moved into the semi-finals, where the top 25 submissions would be passed on to the judging round.  At the time this was written less than 23 hours remained.

What does this have to do What Sorts?  There are some great submissions that it would be great to give a last minute boost of support to.  Here are three:

1. Helping Medically Fragile Children & Families Enjoy Better Lives. Hope’s Home seeks to improve the quality of life for medically fragile children in the community as it provides the very first medical daycare of its kind in Canada. Our mission is to help medically fragile children

God as one’s moral compass

Creating God in One’s Own Image is great post from Ed Young at Not Exactly Rocket Science on Nicholas Epley’s just published PNAS paper reporting a scientific study of what happens when God talks to some people, perhaps even YOU

Right Here, Lord.

For many religious people, the popular question “What would Jesus do?” is essentially the same as “What would I do?” That’s the message from an intriguing and controversial new study by Nicholas Epley from the University of Chicago. Through a combination of surveys, psychological manipulation and brain-scanning, he has found that when religious Americans try to infer the will of God, they mainly draw on their own personal beliefs. Read the full post from NERS right here.

Does anyone remember “lobotomy”?

Picture of brain surgery

The New York Times recent Surgery for Mental Ills Offers Both Hope and Risk raises, for me, one big question: why the enthusiasm for bringing experimental brain-fu*king to the public’s attention right now? As the article reports but does not underscore in the name of balance, the history of psychosurgery is one of moral and medical failure, though failures recognized only in retrospect. What could be so different now? That we’re not considering lobotomies (which sever the frontal lobes) but cingulotomies (which sever into the anterior cingulate) and capsulotomies (which sever the connections between the cortex and the medulla that make up the internal capsule)?

h/t to ARPH’s Psychosurgery promoted by the NYT: Here we go, again; for a more optimistic take on this, see also Mind Hack’s Psychosurgery : new cutting edge or short, sharp shock (the only comment up there gives some pause, however).

The Fragility of “Normal”

This week’s print edition of Maclean’s features an article by Mark Steyn blaming gay rights advocates for the “imminent threat” of legalized polygamy in Canada. Once you make one amendment to what is normal, Steyn claims, you won’t be able–or even justified–to prevent further changes.

The article is interesting for two reasons. First, naturally, there is no mention of what relevant differences there are between the two forms of marriage. Steyn ignores a vast body of literature on the subject, which is more than a slight oversight for a journalist. Second, Steyn’s underlying attitude appears to be that we should fear any departure from normal, where the definition of normal he uses is typified by the pretty, white suburbs of 60 years ago.

I recommend reading it, and perhaps writing a letter.

CFP: Special issue on Feminist Disability Studies and/in Feminist Bioethics

CALL FOR CONTRIBUTIONS TO A SPECIAL ISSUE OF 

INTERNATIONAL JOURNAL OF FEMINIST APPROACHES TO BIOETHICS (IJFAB)

Vol. 3, no. 2, Fall, 2010         

 

From the Margins to the Center:

Feminist Disability Studies and/in Feminist Bioethics

 

Guest Editor,  Shelley Tremain

 

In recent years, work done in mainstream bioethics has been challenged by the emerging field of disability studies.  A growing number of disability theorists and activists point out that the views about disability and disabled people that mainstream bioethicists have articulated on matters such as prenatal testing, stem cell research, and physician-assisted suicide incorporate significant misunderstandings about them and amount to an institutionalized form of their oppression.  While some feminist bioethicists have paid greater attention to the perspectives and arguments of disabled people than other bioethicists, these perspectives and arguments are rarely made central.  Feminist disability theory remains marginalized even within feminist bioethics. 

 

This issue of IJFAB will go some distance to move feminist disability studies from the margins to the center of feminist bioethics by highlighting the contributions to and interventions in bioethics that feminist disability studies is uniquely situated to make.  The guest editor seeks contributions to the issue on any topic related to feminist disability studies and bioethics, including (but not limited to):

Longmore on Palin and Obama

The esteemed historian of American history and disability history Paul Longmore has an article in Huffington Post entitled “Palin Talks About Special Needs Children, But Obama Has Substantive Plans for All People with Disabilities.”  Here is an excerpt:

Ever since Sarah Palin’s acceptance speech, there has been a great deal of talk about “special needs” children but little about the issues that concern the 54 million Americans with disabilities of all ages. Pollsters and pundits almost completely ignore the tens of millions of voters in the disability rights constituency—adults with disabilities, family members, and many professionals—but they will play a much larger role in this election than most observers recognize. That makes understanding their issues important.

Palin’s promise to be a “friend and advocate” for the families of children with disabilities has some parents understandably excited. In August, University of North Carolina researchers reported “chilling” rates of “hardship” among both middle class and poor families with disabled children as they struggle “to keep food on the table, a roof over their heads, and to pay for needed health and dental care.” Large numbers of adults with disabilities face the same hardships. 

Read the entire article here: http://www.huffingtonpost.com/paul-k-longmore/palin-talks-about-special_b_131758.html

The Criminal Brain

Cover of Rafter's The Criminal Mind showing two head shots

Criminologist / sociologist Nicole Rafter has a new book out, The Criminal Brain: Understanding Biological Theories of Crime, with NYU Press. The flyer here will give you a spanking 20% off, and I’d be happy to send it to anyone who needs one. Rafter has written extensively on crime, science, film, and, most relevant for me and many readers of this block, on the history of eugenics. Her White Trash: The Eugenic Family Studies: 1877 – 1919, which is surprisingly hard to get now (our library, with over 5 million volumes, doesn’t have it …) collects the now classic “white trash studies”, starting with Dugdale’s “The Jukes”, which provided the core of the scientific basis for eugenic sterilization policies in North America, including here in Alberta. You can get heaps more information about Rafter from her website. And for a special 20% discount …

Three Cheers for Granta!

Cover of Granta 102, The New Nature Writing, showing a person in a semi-cleared field

I am a long-time Granta subscriber, and it remains one of the most informative and fun things I read on a regular basis. For those not in the know, Granta is “the magazine of new writing”, published out of the UK, and it published issues 100-102 under the new editorship of Jason Crowley this year. It includes fiction and poetry, but also essays, autobiography, photo essays, and other forms of writing. Two things about it that might be of interest to readers of this blog.

The first is that under Crowley’s short-lived editorship (he has now moved on, or perhaps back, to The New Statesman), Granta now has a significant online component, much of which is free. You can go there and check out interviews with authors, weekly updates on relevant stories, recent events, and much more. Some of this complements the printed version, but much of it is free-standing and so of use to those who don’t subscribe to or otherwise read Granta. Two on-line items worth checking out are

Call for Contributions: Feminist Disability Studies and/in Feminist Bioethics

CALL FOR CONTRIBUTIONS

TO A SPECIAL ISSUE OF

 

INTERNATIONAL JOURNAL OF FEMINIST

APPROACHES TO BIOETHICS (IJFAB)

Vol. 3, no. 2, Fall, 2010

 

From the Margins to the Center:

Feminist Disability Studies and/in Feminist Bioethics

 

Guest Editor,  Shelley Tremain

 

In recent years, work done in mainstream bioethics has been challenged by the emerging field of disability studies.  A growing number of disability theorists and activists point out that the views about disability and disabled people that mainstream bioethicists have articulated on matters such as prenatal testing, stem cell research, and physician-assisted suicide incorporate significant misunderstandings about them and amount to an institutionalized form of their oppression.  While some feminist bioethicists have paid greater attention to the perspectives and arguments of disabled people than other bioethicists, these perspectives and arguments are rarely made central.  Feminist disability theory remains marginalized even within feminist bioethics. 

 

This issue of IJFAB will go some distance to move feminist disability studies from the margins to the center of feminist bioethics by highlighting the contributions to and interventions in bioethics that feminist disability studies is uniquely situated to make. The guest editor seeks contributions to the issue on any topic related to feminist disability studies and bioethics, including (but not limited to):

Review of Open Your Eyes: Deaf Studies Talking

Jackie Scully has written an interesting and provocative review of Open Your Eyes: Deaf Studies Talking , ed. H-Dirksen L. Bauman (University of Minnesota Press, 2008) for Metapsychology Online.  Here is an excerpt:

“Every now and again, something happens that creates a flurry of media interest in deafness. These days it’s often to do with biomedical technology and the response to it of the “culturally Deaf” — people with audiological deafness who consider themselves members of a cultural grouping rather than disabled. So we have the rejection (by some Deaf people but not all) of cochlear implants, or the use (by some Deaf people, but not all) of reproductive technologies to “select for” deafness. The resulting discussions might be described as dialogues of the deaf, if the pun were not so obvious and so bad, and in fact so wrong (most deaf people can dialogue with each other perfectly well. It’s dialogue between Deaf and hearing that can get problematic).”… 

Read the full review here: http://metapsychology.mentalhelp.net/poc/view_doc.php?type=book&id=4452

Canadians sweep podium in Paralympic pool

TheStar.com/Toronto Star

September 7, 2008

THE CANADIAN PRESS

BEIJING – Valerie Grand’Maison got Canada off to a flying start at the Paralympics, leading a podium sweep in the 100-metre butterfly for the visually impaired on the opening day of competition.

Cyclist Jean Quevillon captured Canada’s first medal of the Games earlier in the day, a bronze in the men’s individual pursuit for cerebral palsy athletes.

Grand’Maison, from Longueuil, Que., Kirby Cote of Winnipeg and Chelsea Gotell of Antigonish, N.S., finished 1-2-3 in the butterfly. The 19-year-old Grand’Maison clocked a Canadian record one minute 6.49 seconds in her Games debut, less than a second off the 12-year-old world record.

“I’m so happy, I’m speechless right now,” said Grand’Maison, who won five gold medals at the 2006 world championships. “It’s a dream come true. Every single morning I have thought about winning Paralympic gold and it has now finally happened.   “And it was extra special to share the podium with my teammates. It’s a proud moment for us.”

Shrink Rap on Tats, Stats, and Crossing the Borderline

Young male with plenty of tattoos, but still room for improvement

Well, it’s that time of year again, when suddenly we realize that the dream is over and it’s back to the real world. (And no, that’s not because of the Democratic National Convention, though I guess it could be.) No, it’s that end of summer feeling, which in this kneck of the woods is shortly followed by that Expect Snow ANY DAY NOW feeling. It’s coming.

Anyway, I figured that over the next few weeks, much like the last few weeks, my posting contributions are gunna be spinelessly minimal, but thought I might at least point to a few blogs that we’ll add to our blogroll and that some readers might find interesting if they don’t already know about them.

First up: Shrink Rap. It’s a joint psychiatry blog by Dinah, ClinkShrink, and Roy that has been going for over 3 years, operating under the motto A place to talk, no one has to listen. (I hear ya.) Posts are typically short and zappy, and at least 1 in 3 will catch your attention if you’re interested in matters psychiatric at all. When I become a better person, I promise that I will be a more consistent reader of this one myself. Really, really, really.

Two recent posts worth checking out are Love Me, Love My Tattoos, which briefly discusses a Scientific American Mind study that explored the correlation between tattoos and a diagnosis of antisocial personality disorder. Guess what?

Call for Abstracts: Embodied Resistance: Breaking the Rules in Public Spaces

Call for Abstracts

Embodied Resistance: Breaking the Rules in Public Spaces

Co-Editors, Chris Bobel, University of Massachusetts Boston and Samantha Kwan, University of Houston

This edited collection will assemble scholarly yet accessibly written works that explore the dimensions of resistance to embodied taboos of all sorts. We are interested in pieces that describe and analyze the many ways that humans subvert the social constraints that deem certain behaviors and bodily presentations as inappropriate, disgusting, private and/or forbidden in various cultural and historical contexts. Empirical, historical, theoretical and narrative contributions are equally welcome. This book, intended as a supplemental text for use in undergraduate and graduate classrooms, aims to advance and deepen our understanding of the motivations, experiences and consequences associated with the bodies that break the rules through the (intersecting) lenses of gender, race, ethnicity, sexuality, culture, religiosity, class and nation.

CFP: Two themed issues of Journal of Literary & Cultural Disability Studies

The Journal of Literary & Cultural Disability Studies is seeking proposals for 2 themed issues: “Blindness and Literature,” which will be guest-edited by Georgina Kleege; and “Disabling Postcolonialism,” which will be guest-edited by Clare Barker and Stuart Murray. For more information please visit www.journalofliterarydisability.com

The personal tragedy theory of disability, Mike Oliver, and the social model

In 1976, a group of activists known as the Union of Physically Impaired Against Segregation (UPIAS), introduced a set of terms intended to counter medicalized definitions of disability.  While the medicalized definitions previously articulated were ultimately reducible to individual pathology, the UPIAS definitions locate the “causes” of disability within society and social organization. The UPIAS defined disability in this way:

Disability is something imposed on top of our impairments by the way we are unnecessarily isolated and excluded from full participation in society. Disabled people are therefore an oppressed group in society. To understand this it is necessary to grasp the distinction between the physical impairment and the social situation, called ‘disability,’ of people with such impairment. Thus, we define impairment as lacking part of or all of a limb, or having a defective limb, organ or mechanism of the body; and disability as the disadvantage or restriction of activity caused by a contemporary social organization which takes no or little account of people who have physical impairments and thus excludes them from participation in the mainstream of social activities. Physical disability is therefore a particular form of social oppression.