Living Archives Interactive Website World Wide Release

The Living Archives on Eugenics in Western Canada has launched the ‘long awaited’ website on Friday Oct 24, 2014. You can explore the website now by typing in this URL: http://eugenicsarchive.ca/

BIG thanks to the technical team, Natasha Nunn (Tech team lead), Ben McMahen, and Colette Leung! Numerous Living Archives team members have contributed to the content.

In the weeks to come the site will be filled with more content as articles are still being returned from reviews and a few section are stil be worked on.

Please share the website and watch for new additions to come!

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/

Sterilization Abuse in State Prisons: Time to Break with California’s Long Eugenic Patterns

An article by Professor Alex Stern, Living Archives Team Member, has been released today in The Huffington Post. The article, Sterilization Abuse in State Prisons: Time to Break With California’s Long Eugenic Patterns, reveals that at least 148 female prisoners in 2 California institutions were sterilized between 2006 and 2010. Tubal ligations in violation of prison rules during those five years – and there are perhaps 100 more dating back to the late 1990s, according to state documents and interviews.  Professor Stern’s work points to a discernible racial bias in the state’s sterilization and eugenics programs.

Corey G. Johnson of the Center for Investigative Reporting (CIR) published on July 7th a detailed expose’ of unauthorized sterilizations of unwilling women in California prisons. Johnson’s excellent report brought international attention to a scandal that some activists and researchers have at least partially documented. It is important to note that, as the CIR report says, these sterilizations were illegal: Federal and state laws ban inmate sterilizations if federal funds are used, reflecting concerns that prisoners might feel pressured to comply. California used state funds instead, but since 1994, the procedure has required approval from top medical officials in Sacramento on a case-by-case basis. Yet no tubal ligation requests have come before the health care committee responsible for approving such restricted surgeries….

How could this happen?

Governor Gray Davis apologized in 2003 for California’s twentieth-century sterilizations, 20,000  procedures carried out under an explicitly eugenic law. He did so  quietly, via press release, and with no attempt to discover or  compensate the victims. (Recognized experts on American eugenics were  disappointed at the time: Paul Lombardo called it “premature” and Alexandra Minna Stern said it was “preemptive.”) Now his statement seems like a sham. The  fault is no longer the law, it’s the failure to follow the law.

North Carolina is still struggling to pass a budget that includes compensation for its victims of eugenic sterilization.  California has barely started the process of coming to terms with its  troubled history.

The California state prison system is overcrowded — Governor Jerry Brown is appealing a federal court order to release inmates — and conditions are so bad that 30,000 are on  hunger strike. If this report about sterilization helps to usher in a  period of genuine reform, that would be wonderful.

We would still need to educate all too many people, inside and  outside the jail system, about the moral and practical harm of modern  eugenics. Based on some of the remarks by state officials that Johnson  reported, and on some of the comments on coverage of his investigation,  people slide right back into eugenic ways of thinking.

Justice Now is an organization that works with women in prison. Their website has links to the CIR  reports and videos.

Professor Stern’s article in the Huffington Post raises awareness about eugenic practices and calls for a new era of human rights and the protection of vulnerable populations. Tony Platt co-authored the post. The original article can be found here: http://www.huffingtonpost.com/alex-stern/sterilization-california-prisons_b_3631287.html

Nutritional Experiments on Aboriginal Peoples in the News

As a follow-up to the previous post, “Hungry aboriginal kids, adults were subject of nutritional experiments“, here is some coverage of the events through the Toronto Star and CBC.  Article highlights are as follows.

After World War II, the Canadian government subjected aboriginal children and adults to nutritional experiments without their consent.  Many of these experiments were conducted in order to gather information about what the human body needs in terms of vitamins and nutrition.  It resulted in lack of dental care for Aboriginal peoples as well, in order to use gum health as an undistorted measuring tool for scientists (Livingstone, Toronto Star).

Justice Murray Sinclair, chair of the Truth and Reconciliation Commission, states in the Toronto Star that

“This discovery, it’s indicative of the attitude toward aboriginals,” Sinclair said. “They thought aboriginals shouldn’t be consulted and their consent shouldn’t be asked for. They looked at it as a right to do what they wanted then.” (Sinclair, July 21 2013)

It is likely that even at the time, these experiments were seen as ethically dubious (perhaps especially after the atrocities of World War II), and therefore probably why Ian Mosby, the post-doctorate from the University of Guelph, whose research brought these policies to life, uncovered only “vague references to studies conducted on ‘Indians'” while researching the development of health policy for a different project (Livingstone, Toronto Star).

Mosby elaborates, again suggesting the classification of Aboriginals as less than other people,

“I think they really did think they were helping people. Whether they thought they were helping the people that were actually involved in the studies — that’s a different question.” (Mosby, July 21 2013)

The CBC provides archival material from via historian James Daschuk, of a 1946 report of the lives of First Nations in Northern Manitoba.

1946 Report: Medical survey of nutrition among the Northern Manitoba Indians

You can read the full articles through the links below:

Toronto Star: http://www.thestar.com/news/canada/2013/07/16/hungry_aboriginal_kids_used_unwittingly_in_nutrition_experiments_researcher_says.html

CBC: http://www.cbc.ca/thecurrent/episode/2013/07/18/starvation-politics-aboriginal-nutrition-experiments-in-canada/

Hungry aboriginal kids, adults were subject of nutritional experiments

New historical research reveals that Canadian government bureaucrats conducted nutritional experiments on hungry aboriginal children and adults. Ian Mosby, PhD, is a Historian of Food and Nutrition and while doing postdoctoral work at University of Guelph he came across references to studies conducted on “Indians”.

“This was the hardest thing I’ve ever written,” said Ian Mosby, who has revealed new details about one of the least-known but perhaps most disturbing aspects of government policy toward aboriginals immediately after the Second World War.

Mosby — whose work at the University of Guelph focuses on the history of food in Canada — was researching the development of health policy when he ran across something strange.

“I started to find vague references to studies conducted on ‘Indians’ that piqued my interest and seemed potentially problematic, to say the least,” he said. “I went on a search to find out what was going on.”

Government documents eventually revealed a long-standing, government-run experiment that came to span the entire country and involved at least 1,300 aboriginals, most of them children.

It began with a 1942 visit by government researchers to a number of remote reserve communities in northern Manitoba, including places such as The Pas and Norway House.

They found people who were hungry, beggared by a combination of the collapsing fur trade and declining government support. They also found a demoralized population marked by, in the words of the researchers, “shiftlessness, indolence, improvidence and inertia.”

The researchers suggested those problems — “so long regarded as inherent or hereditary traits in the Indian race” — were in fact the results of malnutrition.

Instead of recommending an increase in support, the researchers decided that isolated, dependent, hungry people would be ideal subjects for tests on the effects of different diets.

“This is a period of scientific uncertainty around nutrition,” said Mosby. “Vitamins and minerals had really only been discovered during the interwar period.

“In the 1940s, there were a lot of questions about what are human requirements for vitamins. Malnourished aboriginal people became viewed as possible means of testing these theories.”

The first experiment began in 1942 on 300 Norway House Cree. Of that group, 125 were selected to receive vitamin supplements which were withheld from the rest.

At the time, researchers calculated the local people were living on less than 1,500 calories a day. Normal, healthy adults generally require at least 2,000.

“The research team was well aware that these vitamin supplements only addressed a small part of the problem,” Mosby writes. “The experiment seems to have been driven, at least in part, by the nutrition experts’ desire to test their theories on a ready-made ‘laboratory’ populated with already malnourished human experimental subjects.”

The research spread. In 1947, plans were developed for research on about 1,000 hungry aboriginal children in six residential schools in Port Alberni, B.C., Kenora, Ont., Schubenacadie, N.S., and Lethbridge, Alta.

One school deliberately held milk rations for two years to less than half the recommended amount to get a ‘baseline’ reading for when the allowance was increased. At another, children were divided into one group that received vitamin, iron and iodine supplements and one that didn’t.

One school depressed levels of vitamin B1 to create another baseline before levels were boosted. A special enriched flour that couldn’t legally be sold elsewhere in Canada under food adulteration laws was used on children at another school.

And, so that all the results could be properly measured, one school was allowed none of those supplements.

Many dental services were withdrawn from participating schools during that time. Gum health was an important measuring tool for scientists and they didn’t want treatments on children’s teeth distorting results.

The experiments, repugnant today, would probably have been considered ethically dubious even at the time, said Mosby.

“I think they really did think they were helping people. Whether they thought they were helping the people that were actually involved in the studies, that’s a different question.”

He noted that rules for research on humans were just being formulated and adopted by the scientific community.

Little has been written about the nutritional experiments. A May 2000 article in the Anglican Journal about some of them was the only reference Mosby could find.

“I assumed that somebody would have written about an experiment conducted on aboriginal people during this period, and kept being surprised when I found more details and the scale of it. I was really, really surprised.

“It’s an emotionally difficult topic to study.”

Not much was learned from those hungry little bodies. A few papers were published — “they were not very helpful,” Mosby said — and he couldn’t find evidence that the Norway House research program was completed.

“They knew from the beginning that the real problem and the cause of malnutrition was underfunding. That was established before the studies even started and when the studies were completed that was still the problem.”

The original article can be found here: http://www.winnipegfreepress.com/arts-and-life/life/sci_tech/hungry-aboriginal-kids-adults-were-subject-of-nutritional-experiments-paper-215688421.html

Mosby’s published paper “Administering Colonial Science: Nutrition Research and Human Biomedical Experimentation in Aboriginal Communities and Residential Schools, 1942–1952” can be found in the journal “Social History” Volume 46, Number 91, May 2013, pp. 145-172.

The abstract for Mosby’s paper on the study can be found here: http://muse.jhu.edu/login?auth=0&type=summary&url=/journals/histoire_sociale_social_history/v046/46.91.mosby.html

Mosby’s blog can be found here: http://www.ianmosby.ca/

Special Issue of the International Journal of Disability, Community & Rehabilitation (IJDCR) with the theme What Sorts of People Should There Be?

Special Issue of the International Journal of Disability, Community & Rehabilitation (IJDCR) with the theme What Sorts of People Should There Be?
Edited by Gregor Wolbring, Associate Professor Community, Rehabilitation and Disability Studies, Department of Community Health Sciences, Faculty of Medicine, University of Calgary, Canada is now available.

Continue reading

Fat Studies: A Critical Dialogue

Call For Papers
“Fat Studies: A Critical Dialogue”

Special Journal Issue of Feminism & Psychology
Guest Editor: Dr Samantha Murray

While cultural anxieties about fatness and stigmatisation of fat
bodies in Western cultures have been central to dominant discourses
about bodily `propriety´ since the early twentieth century, the rise
of the `disease´ category of obesity and the moral panic over an
alleged global `obesity epidemic´ has lent a medical authority and
legitimacy to what can be described as `fat-phobia´. Against the
backdrop of the ever-growing medicalisation and pathologisation of
fatness, the field of Fat Studies has emerged in recent years to offer
an interdisciplinary critical interrogation of the dominant medical
models of health, to give voice to the lived experience of fat bodies,
and to offer critical insights into, and investigations of, the
ethico-political implications of the cultural meanings that have come
to be attached to fat bodies.

This Special Issue will examine a range of questions concerning the
construction of fat bodies in the dominant imaginary, including the
problematic intersection of medical discourse and morality around
`obesity´, disciplinary technologies of `health´ to normalise fat
bodies (such as diet regimes, exercise programs and bariatric
surgeries), gendered aspects of `fat´, dominant discourses of
`fatness´ in a range of cultural contexts, and critical strategies for
political resistance to pervasive `fat-phobic´ attitudes. Continue reading

Ashley Revisited… American Journal of Bioethics

Today,  12 January 2010, the American Journal of Bioethics published 30 more pages of material on the Ashley X Growth Attenuation controversy. Approximately the first half of these pages are Diekema and Fost’s “response to critics” and the remainder is comprised of nine brief peer commentaries on the  Diekema and Fost article.

Predictably, Diekema and Fost vigorously defend the “Ashley procedures.” They categorize and, in some cases, mischaracterize the many critical arguments against the procedures into 25 objections, determine that some have substance, and then provide counter-arguments to in an attempt to dismiss all 25.  In my opinion, one of the problems with this approach is that they attempt to play three roles. They present their own side of the issue, present the opposing view, and then set themselves up as objective  judges of the two arguments. Not surprisingly, they find themselves to be right and their critics to be wrong. Thankfully, the American Journal of Bioethics provided an opportunity for peer commentary. Of course, not all the commentary directly opposes the procedures, but most of it does. Continue reading

Cognitive Disability and its Challenge to Moral Philosophy

Readers of the blog who followed our Thinking in Action series of blog posts on the above-named conference, held in New York in September 2008, as well as others, might be interested in having a look at the finished papers from that conference. They have now been published in a special issue of the journal Metaphilosophy (which strikes me, at least, as a strange venue). The table of contents is below and from here you can link to the abstracts for each of the papers; for the full versions, you need an individual or institutional subscription, it seems. To see some videoclips from the conference, together with critical commentary, check out the Thinking in Action posts themselves; nearly all of these directly discuss the talks at the conference corresponding to some of the papers listed below. The videos are both closed captioned and have transcripts with them to enhance accessibility.

thanks to shortintro for the blog comment that drew this to our attention.

**********

ARTICLES

INTRODUCTION: RETHINKING PHILOSOPHICAL PRESUMPTIONS IN LIGHT OF COGNITIVE DISABILITY (p 307-330)
LICIA CARLSON, EVA FEDER KITTAY
Published Online: Sep 18 2009 11:37AM
DOI: 10.1111/j.1467-9973.2009.01609.x

Abstract | References | Full Text: HTML, PDF (Size: 161K)
Save Article Continue reading

Human Kinds–Species Typical, Sub-typical, Beyond Typical–Q@A

A couple of questions from our panel for Gregor Wolbring–one from Ed Stein on human rights, and one from Natasha Vita-More on environmentalism and uploading.

If the discussion interests you, drop back and hear Gregor’s talk in Parts 1 and 2, or drop us a line or a comment.

Disability Ethics Bibliography

As part of our Work at the Disability Ethics Project, we have just launched a new Disability Ethics Bibliography. There are currently just over 600 references with abstracts and annotations in a RefShare format that is easily searchable with downloadable results. Of course, this is only a small sampling of the relevant materials and the bibliography will continue to be a work in progress.

We welcome your help in helping us identify more of items to include. I you have additional items to suggest for the bibliography please contact us for instructions on submitting items at initativ@ualberta.ca

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.

Longmore on Singer’s “Tribute” to Harriet McBryde Johnson

The New York Times magazine recently (Becember 28, 2008) carried Peter Singer’s Tribute to Harriet McBride Johnson as covered in a previous What Sorts Posting. Some people, however, were horrified at Singer’s contribution for a number of reasons. For one, Paul Longmore, wrote passionately about what was wrong with publishing the Singer piece. Continue reading

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): Continue reading

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

Knowing Thine Enemy?: a book to look out for

cover image for Enhancing Human Capacities by Julian Savulescu

cover image for Enhancing Human Capacities by Julian Savulescu et. al

Some of you — and especially philosophers on the ‘what sorts’ team — will know of a controversial Australian ex-pat ethicist who likes to provoke debate about what sorts of people there should be … No,this time it’s not Peter Singer (although Singer was his PhD supervisor), but rather Julian Savulescu of The Oxford Uehiro Centre for Practical Ethics. Savulescu’s chief interest is the use of biotechnology for what he presumptively calls ‘human enhancement.’

When he worked for the Murdoch Children’s Research Institute Savulescu wrote a piece called “In Defense of Selection for Nondisease Genes”.* As this community knows well, others have argued that it is defensible to engage in postconception selection against diseased genes, where the term diseased genes refers to:

a gene that causes a genetic disorder (e.g. cystic fibrosis) or predisposes to the development of a disease (e.g. the genetic contribution to cancer or dementia)

This argument in itself is highly contestable, given that it is reasonable to feel that a ‘diseased’ life of one with, say, cystic fibrosis — let alone one that down the line ends with cancer or dementia — is worth living… and more pertinently, that there are grave social consequences when that decision is made on others’ behalf as a matter of course. Savulescu, however, offers a far more radical thesis than this. Continue reading

Savage Language

If you haven’t read what talk show host Michael Savage thinks about autistic children (99% of whom he says are misdiagnosed), go here.

If you haven’t read his attempt to explain himself, go here. Savage cites his own experience seeing his “severely disabled” sibling die in a “‘snake-pit’ of a ‘mental hospital'” New York as why he “[knows] first-hand what true disability is.”

This is my suggestion for providing him with a little autism education. And then things got even more interesting when I brought up a recent use of the word “retarded” by another mother of a disabled child.

Maybe sticks and stones don’t break my bones, but names—but words—can really, really hurt and miss the mark entirely.

Mastectomy, not mastectomy

The “Ashley-X” or “Pillow Angel” case received a great deal of attention and was the subject debate over the last two years. The case received initial attention in October 2006, when Gunther and Diekema published a clinical account of Attenuating growth in children with profound developmental disability including with what they described as “the ethical debate.” A few moths later, early in 2007, attention to the case became intense after CNN and other major media source picked up the story. This post deals with one aspect of the story that was left out of the original report, the bilateral radical mastectomy performed on Ashley, and asks why the authors failed to mention it. Continue reading

The Politics of Ableism

a new paper out by Gregor Wolbring
Development 51: 252-258; doi:10.1057/dev.2008.17
http://www.palgrave-journals.com/development/journal/v51/n2/index.html
Technorati Tags: , , , , , , ,

The New Autism Rights Movement

Over the last decade, New York Magazine has run some excellent articles on mental health, Big Pharma, and now disability. They recently published this piece on The New Autism Rights Movement and you can get an overview of the article at the The Huffington Post. For those interested in the topic, I also recommend Richard Grinker’s new book Unstrange Minds, which examines the dual life of autism as a disease and cultural phenomena (among many other topics).

update: a comment below alerted me to this blog entry by Stanley Fish on the question of normalcy and difference, sparked, in part, by the debate over autism.