Eva Feder Kittay: 2014 Guggenheim Fellow

Eva Feder Kittay, Distinguished Professor of Philosophy at Stony Brook University and Senior Fellow of the Stony Brook Center for Medical Humanities, Compassionate Care, and Bioethics, has been awarded a Guggenheim Fellowship to complete a book tentatively titled Disabled Minds and Things that Matter: Lessons for a Humbler Philosophy. The prestigious fellowship, which places Professor Kittay in the company of many illustrious names, which also includes a lengthy list of noble prize laureates (Czeslaw Milosz being a particular favourite of mine), was established in 1925 and is granted to individuals whose work makes substantial contributions to education, literature, art, and science. Professor Kittay’s work pushes philosophical discourse beyond the inadequate rationalistic framework that has traditionally been utilized to measure the worth of persons. She urges that actual relationships of care and love characterize who we are and why we are morally considerable. Equipped with both the argumentative and analytic tools of a philosopher and the personal experience of being a parent of a child with severe cognitive disabilities, Eva Kittay is in a unique position to play the part of a competent judge whose insights have great philosophical, and more saliently, educational value. Although Disabled Minds and Things that Matter: Lessons for a Humbler Philosophy will be a philosophically rigorous contemplation on the place of disability in philosophical discourse, it will nevertheless be aimed at the educated lay reader, meaning that it will not only shape future philosophical projects, but will also serve to educate the public.

Why is a focus on disability important to the future of philosophical research? Taking severe cognitive disabilities into account when formulating questions in philosophy will force us to reframe both traditional and contemporary inquiries. For example, the rationalistic model of personhood inherited from Aristotle and Kant as well as the numerous individualistic psychological accounts of diachronic personal identity that have been developed since Locke’s Essay Concerning Human Understanding will have to give way to other, more inclusive models and accounts that better represent the relational nature of memory, personhood, and moral status of human beings. Relational personhood and an extended account of personal identity, which is the focus of my own research is indebted to such fundamental reframing of philosophical questions by placing the interests of individuals with severe cognitive disabilities at the centre of our philosophical contemplations regarding the moral status of persons. If placing disability at the centre of philosophical inquiry helps philosophy transcend its current theoretical bounds, then not only is Eva Kittay correct in suggesting that disability is at the frontier of philosophy itself, but Professor Kittay and those her research project inspires to work at the intersection of philosophy and disability studies are forging a new philosophical direction in the time honoured spirit of philosophical innovation and transformation.

We Were Children

If you missed the recent broadcast of We Were Children you can still watch the full movie online. It will be available for viewing until April 23.

We Were Children

We Were Children is a 2012 Canadian documentary film about the experiences of First Nations children in the Canadian Indian residential school system. Produced by the National Film Board of Canada. For over 130 years, Canada’s First Nations children were legally required to attend Government-funded schools run by various orders of the Christian faith. ‘We Were Children’ is based on the testimony of two survivors.

A 24 hour Indian Residential Schools Crisis Line is posted at the beginning of the film offering assistant to anyone who is distressed by the broadcast: 1-866-925-4419

The film was shot in Manitoba, in Winnipeg, St-Pierre-Jolys and at the former Portage residential school, now the Rufus Prince building, in Portage la Prairie. It was produced by Kyle Irving for Eagle Vision, Loren Mawhinney for eOne Television, and produced and executive produced by David Christensen for the National Film Board of Canada. The executive producer for the Eagle Vision was Lisa Meeches, whose parents and older siblings were sent to residential schools.

Meeches, who spent over seven years travelling across Canada to collect residential school survivors’ stories for the Government of Canada, has stated that the idea for the film originated from a discussion she’d had at the Banff World Media Festival.[6] It was Meeches who approached director Wolochatiuk with the project. CBC Manitoba reporter Sheila North Wilson assisted the production by translating material in the script from English to Cree.
We Were Children premiered on October 2, 2012 at the Vancouver International Film Festival, followed by a screening at the imagineNATIVE Film + Media Arts Festival in Toronto on October 18. It was broadcast on the Aboriginal Peoples Television Network in March 2013, followed by a DVD release from the National Film Board of Canada on April 12, 2013. (background information taken from the wikipedia article written on the film).

Today, March 27, 2014 the Truth and Reconciliation Commission of Canada begins hearings at the Shaw Conference Centre. The hearings are open to the public and attendance is encouraged. As the TRC Mandate (1998) stated, it is not only the sincere “acknowledgement of the injustices and harms experienced by Aboriginal people” but also the community’s step for “continued healing” and “[paving] [of] the way for reconciliation” that is the overall aim of testimonies through the the context of the TRC.

The program for the TRC in Edmonton can be found here:http://www.trc.ca/websites/alberta/index.php?p=766

NO REGISTRATION NEEDED TO ATTEND.
Those wishing to provide a statement to the Commission may register onsite during the event.

CAN’T COME? The Alberta National Event will be livestreamed at http://www.trc.ca.

Reflections on World Down Syndrome Day 2014

March 21st is World Down Syndrome Day, and 2014 is the ninth year in which it has been held, and the third in which it has been recognized by the United Nations. I want to start this post with an already-widely viewed video from CoorDown that has been up for less than a week, and step back from there.  The video is called “DEAR FUTURE MOM”:

At the time of writing, this video had been viewed over 1.6 million times in 6 days, with over 500 comments on it.  It’s clearly designed to be emotional and to directly send a number of messages, including at least these: anxieties about having a child with Down syndrome are understandable but overblown; children with Down syndrome will likely bring much joy and richness to the lives of any family they are in, and particularly to mothers; and Down syndrome does not obliterate or subhumanize the person who has it.

The need for those messages, and perhaps others, to be sent, loud and clear, is grounded in the sad fact that parental fears associated with potentially having a child who will have Down syndrome are amongst the highest risk factors for people with Down syndrome.  This is because Continue reading

Truth & Reconciliation Commission – Edmonton March 27 – 30, 2014

For 116 years, thousands of Aboriginal children in Alberta were sent to Indian Residential Schools funded by the federal government and run by the churches. They were taken from their families and communities in order to be stripped of language, cultural identity and traditions.

Canada’s attempt to wipe out Aboriginal cultures failed. But it left an urgent need for reconciliation between Aboriginal and non-Aboriginal peoples.

There were more Indian Residential Schools in Alberta than in any other province. The Truth & Reconciliation Commission of Canada (TRC) is holding its Alberta National Event in Edmonton this year.

Come and share your truth about the schools and their legacy. Witness and celebrate the resilience of Aboriginal cultures.
(excerpt from TRC.ca)

Alberta National Event – March 27 – 30, 2014 will be held in Edmonton at the Shaw Conference Centre 9797 Jasper Avenue. No registration needed to attend. Those wishing to provide a statement to the Commission may register onsite during the event.

You can download the program click here

On Thursday March 20 from 3:00 pm – 5:00 pm at the University of Alberta, Lister Centre, Maple Leaf Room
Understanding the TRC: Exploring Reconciliation, Intergenerational Trauma, and Indigenous Resistance featuring:

Commissioner Dr. Wilton Littlechild
Dr. Rebecca Sockbeson
Dr. Ian Mosby
James Daschuk
Dr. Keavy Martin
Tanya Kappo
Moderated by Jodi Stonehouse

Reception 5:00 pm – 6:00 pm – Tea, bannock and berries. Event is free.

Gala Reading featuring:
Marilyn Dumont
Daniel Heath Justice
Eden Robinson
Gregory Scofield
Anna Marie Sewell
Richard Van Camp

Friday, March 21 from 7:30 pm – 9:30 pm in Humanities Centre L-1 (111th Street and Saskatchewan Drive)
Giveaways. Books for sale. Free Admission

You find this information and links to campus maps here

What happens when your son tells you he’s really a girl? Inside the families embracing the new world of gender variance

Some medical professionals see gender variance as a natural characteristic of human diversity, similar to sexual preference, that should be accepted and even celebrated. An article in Macleans (Jan 6, 2014) explores the lives of supportive families and their trans and gender variant children..

The Public Health Agency of Canada published comprehensive recommendations in 2010 for schools to support gender-variant students and several provincial governments have added “gender expression” to the list of prohibited grounds for discrimination. The tides may be turning but the need for education is high. The negative judgement of trans individuals suggests there is a 17% higher risk for suicide and even higher risks for being bullied by others.

The Macleans article also has a short video embedded within and pictures throughout, providing a glimpse into the daily lives of trans and gender-variant children and their families. This is an excellent introduction and movement towards educating the public and advancing the needs of trans youth – which is a natural characteristic of human variation.

You can read the article here: http://www2.macleans.ca/2014/01/13/what-happens-when-your-son-tells-you-hes-really-a-girl/

 

In the United States the National Gay and Lesbian Task Forces and the National Center for Transgender Equality conducted a survey of 6,450 trans and gender non-conforming individuals from all 50 states. This study was the first of its kind and provides us with a clear picture of what needs to change in order to stop the injustice in their lives..

Discrimination against trans and gender variant individuals provides critical data for policymakers, community activists and legal advocates to confront the appalling realities. Respondents experience higher levels of poverty and a staggering 45% of those survey reported attempting suicide. Harassment and discrimination in education was reported at alarmingly high rates and include physical assault (35%) and sexual violence (12%). Harassment was so severe that it led to almost 15% to leave school in K-12 settings or in higher education..

Abuse by Police, discrimination in health care and public accommodations, employment discrimination and economic insecurity, as well as housing discrimination, barriers to receiving updated documents (identification and personal records). The 6,450 individuals all reported that family acceptance was of great importance, although the majority reported experiencing family rejection. Despite all of the harassment, mistreatment, discrimination and violence faced by trans individuals the study demonstrates their determination, resourcefulness and perseverance. This report is a call to action for all of us, especially for those who pass laws and write policies. Inaction is a form of violence that will negatively affect trans and gender variant people. Take up the call for human rights for transgender, transsexual, trans, and gender variant people and confront the patterns of abuse and injustice. Let’s learn (and teach) the values of human variation to our children, to each other and let’s learn more ourselves!.

You can access the full report titled “Injustice at every Turn” here: http://www.TheTaskForce.org or here: wwww.TransEquality.org. You can also get more information about the survey at: http://www.EndTransDiscrimination.org

Restrictive laws silences grieving parents

Publication ban prohibits naming deceased children, shields Alberta government from scrutiny.
Alberta’s ban on publicizing the names and photos of children who die in provincial care is one of the most restrictive in the country, robbing grieving families of their ability to raise concerns in public about the deaths and sheltering government officials from scrutiny.

About 10 children die in care in Alberta every year, but because of a law that prevents their names and photographs — and those of parents or guardians — from being publicized, the public is denied the right to know who they are and assess whether their deaths could have been prevented.

Basic information about the 145 children who died in care in Alberta between 1999 and 2013 was only released to the Edmonton Journal and Calgary Herald after a four-year legal battle. Still, we can only tell you the names of two of the 145. That’s because their parents applied in court to have the publication ban lifted — a step all parents must take if they wish to speak out about the deaths of their children.

Velvet Martin, who went through the court process, said the ban is evil and “the nemesis of justice.”

“They have failed the child in the utmost way possible and now they are stealing their identity — the only thing they have left,” said Martin, whose daughter Samantha died after being in care. “It’s bad enough to lose a child, but to have it covered up is just wrong and I won’t stand for it.”

With scant information on child death cases, Albertans are left to trust that the government will investigate and correct any systemic problems, yet often the same people responsible for supervising a case lead the review.

The result of the legislation is a blanket of confidentiality over the child welfare system.

Child welfare agencies won’t talk to the media. Several didn’t respond to repeated requests for information about how they protect children and one, citing the province’s privacy act, referred calls to the Ministry of Human Services.

People who work inside the system are barred from speaking publicly about their experiences; even those who spoke on condition of anonymity were afraid they’d lose their jobs.

Government officials argue the ban is necessary to protect the privacy of children and their families; in some cases, a child who dies might have siblings who are also in government care. Children in care are some of the province’s most vulnerable citizens, and provincial authorities feel strongly about trying to protect them.

“I think there is always a balance of values that you have to take into account,” said Human Services Minister Dave Hancock. “One of the values obviously is an open and transparent process so that people can know and understand what is happening and know that things are being handled in an appropriate fashion. The other value is you don’t want to intrude in the personal lives of families any more than necessary, particularly in circumstances like that where they have already suffered significant tragedy.”

In a press conference on Wednesday, in response to the Journal-Herald investigation, Hancock said that the issue of where that line should be drawn will be discussed at a roundtable of MLAs and experts scheduled for January. Hancock announced the roundtable on Tuesday.

The Alberta College of Social Workers supports the principle of the ban for the benefit of the family and any siblings.

“It could cause some definite hardship for the family,” said spokeswoman Lori Sigurdson. “They could be ostracized in the community. It could be a shame thing. Their relationship with the ministry and the worker who is working with them could become antagonistic or more difficult because they feel they have betrayed them.”

Hancock said the bodies that review deaths — including the child and youth advocate, the quality assurance council and the fatality inquiry review board — provide the public with appropriate access to information. He said it’s “not necessarily useful to publish a name and face just for the prurient interest of the opposition or others.”

However, in an interview this month, Hancock admitted he didn’t realize the law went so far as to prohibit parents from talking about their children and releasing their names to the media, and said he would look into it.

“I think families for the most part need to be able to heal and need to have the discussions that they need to heal,” he said.

That’s the argument made by the family of a 21-month-old aboriginal baby who died in a foster home in 2010.

“It is ridiculous. We want to tell our story and we can’t,” the girl’s aunt said. “We’re suffering in silence here.”

A Morinville foster mother has been charged with second-degree murder, but the case has not yet gone to trial. It could be years before the facts of the case and what went wrong are revealed — if ever.

Choking back tears, the aunt said problems with the system must be scrutinized if similar deaths are to be avoided. “Every couple of years, another child is dying in care, and it is usually a native kid,” she said.

Martin, the mother who had the ban lifted on her daughter’s name, said almost every family she has met wants to speak out, but they often don’t know their rights and can’t afford to seek legal advice.

“A lot of people don’t have the fortitude, they don’t have the education, the ability, to come forward,” said Martin, a spokeswoman for a national advocacy group called Protecting Canadian Children.

In her case, she was able to lobby for a fatality inquiry. During that process, she found out that while Samantha’s caseworker had assured her that the girl — who had a number of medical conditions — was getting exceptional care, the caseworker hadn’t seen her for 14 months, nor had she been examined by a doctor in three years.

“I was naive and under the impression that children’s services was doing an internal investigation and were actually going to do something other than cover their ass,” she said. “It was a hard lesson for me.”

Like Martin, Jamie Sullivan went to court to lift the ban on her daughter Delonna’s name — but she’s angry she had to. “If you want to arrest me for talking about my daughter, then arrest me,” she said. “You can’t take anything more from me than you have already. … And I’m not going to have somebody telling me I can’t show her picture. That’s just not right.”

The publication ban law is part of Alberta’s Child, Youth and Family Enhancement Act. It stipulates that “no person shall publish the name or a photograph of a child or of the child’s parent or guardian in a manner that reveals that the child is receiving or has received intervention services.” The penalty is a maximum $10,000 fine or up to six months in jail.

Prior to legislative changes in 2004, the ban didn’t exist. A 13-member task force, chaired by Calgary MLA Harvey Cenaiko and made up entirely of Conservative MLAs and child welfare officials, had recommended the change to government. Cenaiko told MLAs the new provisions were drafted to align with the Freedom of Information and Protection of Privacy Act. No mention was made that the ban remained in place after a child died.

Provincial privacy commissioner Jill Clayton, who wasn’t in office when the law was amended, said she can’t find any record of the government consulting the office for advice or guidance on the issue.

Across Canada, most provinces ban the publication of names of children who are in care or receiving services from the government, but lift the ban or decline to enforce it when one of those children die. Only Nova Scotia, New Brunswick and Quebec have bans similar to Alberta’s, and officials say Quebec currently does not enforce the ban when a child dies.

But in Alberta, despite the minister’s promise to review the ban, the government continues to enforce it.

This month, Alberta’s children services director refused a request from the Journal and Herald to lift the ban on the name of a Samson Cree baby, opposing an application that was supported with affidavits from both the child’s parents.

Being able to publish the names, photographs and personal stories of children who die in care are large factors in bringing about change, experts say. If parents are muzzled, there is no one else to speak for the children, said Robert Fellmeth, executive director of the Children’s Advocacy Institute in the U.S.

“These children have no lobby,” said Fellmouth, a professor of public interest law at the University of San Diego. “They have no campaign contributions. They don’t vote. Their sole asset is democracy, and public sympathy and concern, and disclosure. That’s the sole political card they have.”

Many laws to protect children are named after child victims, he noted. The Amber Alert system was named for Amber Hagerman, a nine-year-old abducted and murdered in Arlington, Texas, in 1996, while Chelsea’s Law in California, which increases penalties and monitoring of sexual offenders, was named after 17-year-old rape-murder victim Chelsea King.

In Canada, there’s the Jordan Principle that stipulates that care be provided for children when they need it and decisions about who is responsible for paying for it be made later. It is named after a five-year-old Manitoba Cree child named Jordan River Anderson, who died in hospital while federal and provincial authorities bickered over who was responsible for his home care.

And in other provinces, the deaths of children in care make headlines. In Manitoba, a public inquiry has put the 2005 death of five-year-old Phoenix Sinclair under the microscope; in Saskatchewan, RCMP are investigating the alleged 2013 murder of six-year-old Lee Bonneau by another child under the age of 12; and in Ontario, an inquiry has been probing the case of five-year-old Jeffrey Baldwin, who died in 2002 after years of mistreatment.

By comparison, in Alberta, when the child and youth advocate writes reports about flaws in the system, he has to make up names for the children. In July, he released “Remembering Brian,” and just last week he issued “Kamil: An Immigrant Youth’s Struggle.” Both are pseudonyms.

Even when a death of a child in care is examined at a fatality inquiry in Alberta, the children and parents are identified only by initials. Provincial court Judge Leonard Mandamin balked at this practice in an August 2007 fatality inquiry report into the suicide of a 16-year-old Tsuu T’ina boy. “The use of initials dehumanizes the tragic death of this young person,” he wrote.

University of Manitoba professor Arthur Schafer, director of the Centre for Professional and Applied Ethics, wonders who the publication law is designed to protect.

“My overarching concern is that privacy is being used as a smokescreen to conceal potential wrongdoing and to prevent the public from getting an accurate picture of problems that may turn out to be systemic,” he said. “Privacy considerations are important, but they aren’t absolute.”

Publication bans by province

British Columbia: The name and photo of a child who dies in care can be published provided information comes from family or other sources.

Alberta: It is illegal to publish names or photos of children who die in care without a court order lifting the ban.

Saskatchewan: The name and photo of a child who dies in care can be published provided information comes from family.

Manitoba: The name and photo of a child who dies in care can be published provided information comes from family.

Ontario: The name and photo of a child who dies in care can be published without restriction.

Quebec: It is illegal to publish the name and photo of a child who dies in care, but the law is not enforced.

New Brunswick: It is illegal to publish the name of a child who dies in care.

Nova Scotia: It is illegal to publish the name of a child who dies in care.

Prince Edward Island: The name and photo of a child who dies in care can be published.

Newfoundland and Labrador: The name and photo of a child who dies in care can be published if information comes from family or other sources.

BY DARCY HENTON AND KAREN KLEISS, CALGARY HERALD AND EDMONTON JOURNAL

Story can be found online here: http://www.edmontonjournal.com/news/Restrictive+silences+grieving+parents/9221675/story.html

People With Disabilities React to Mannequins Created in Their Image

Fashion mannequins — the type you see constantly in clothing store windows — are generally what we think of as flawless specimens of the human form. But this project questions what we mean by “flawless”:

This project gives us an opportunity to experience Human Variation and bring into question how we represent ourselves.

This site has a short video that is worth watching.

http://jezebel.com/people-with-disabilities-react-to-mannequins-created-in-1475812519

Adrienne Asch–RIP

Adrienne Asch

by Rob Wilson. 

Many of us have been saddened today to learn of the death of prominent disability rights scholar and activist Adrienne Asch.  Some obituaries tributes have started to appear, and we will gather those we find in the coming days and add them to this one.  Please feel free to add your own in the comments to this post.

Adrienne was the Edward and Robin Milstein Professor of Bioethics, and Director of the Center for Ethics at Yeshiva University in New York.  She wrote on ethical issues in reproduction, death and dying, and justice for disadvantaged minorities in American society, and is perhaps best-known amongst philosophers for her powerful articulations of core arguments in the disability rights critique of the busy-as-usual practices utilizing prenatal diagnosis and testing.

Adrienne had been supportive of the What Sorts Network in its early days,

Continue reading

Future Past: Disability, Eugenics, & Brave New Worlds

Future Past: Disability, Eugenics, & Brave New Worlds. A public symposium on the history and ongoing implications of eugenics ideologies and practices for people with disabilities.
Why do these issues matter? How can we address them in teaching and pedagogy, in policy and activism, and in art?

On November 1, 2013 at San Francisco State University, Seven Hill Conference Center from 9:00 am – 8:00 pm.
The Living Archives on Eugenics in Western Canada is co-sponsoring a conference, dinner and reception plus the screening of FIXED: The Science/Fiction of Human Enhancement. Conference organizers include: Paul K. Longmore Institute on Disability, Living Archives on Eugenics in Western Canada, and the Center for Genetics and Society.

Registration is free:  geneticsandsociety.org/futurepast

Future Past is the result of a cross-national collaboration among advocates and academics interested in gaining a deeper understanding of the long and tangled relationship between disability and eugenics, and the contemporary implications of genetic technologies to the lives and futures of people with disabilities.

Program – November 1, 2013

9:00 – 9:15: Welcome

  • Provost Sue Rossier, San Francisco State University
  • Catherine Kudlick, Director, Paul K. Longmore Institute on Disability

9:15 – 9:30: Table Introductions

9:30 – 11:30: What? Eugenics and Disability: Past and Present

Many people are unaware of the history of eugenics movements in North America, yet they are disturbingly relevant today.

Presenters:

  • Alexandra Minna Stern (moderator), Departments of Obstetrics and Gynecology, American Culture, and History at the University of Michigan.
  • Marcy Darnovsky, Center for Genetics and Society
  • Glenn SInclair, Living Archives on Eugenics in Western Canada
  • Nicola Fairbrother, Living Archives on Eugenics in Western Canada

Table Discussions

11:30 – 12:30 : Lunch

12:30 – 2:30: So What? The Consequences of Misremembering Eugenics

What are the social and ethical consequences of omitting eugenics from historical memory or misrepresenting it? What is the price of the pursuit of “human betterment” for reproductive and disability justice?

Presenters:

  • Marsha Saxton (moderator), World Institute on Disability
  • Rob WIlson, Living Archives on Eugenics in Western Canada, University of Alberta
  • Troy Duster, Warren Institute for Law and Society Policy, University of California, Berkeley
  • Rosemarie Garland-Thomson, Emory University

Table Discussions

2:30 – 3:00: Break

3:00 – 5:00: Now What? Looking Ahead to Brave New Worlds

What is being done – and what can be done – to increase public and student understanding of the legacies of eugenics through teaching, activism and art?

Presenters:

  • Milton Reynolds (moderator), Facing History and Ourselves
  • Gregor Wolbring, Living Archives on Eugenics in Western Canada, University of Calgary
  • Kate Wiley, Lick-Wilmerding High School
  • Patricia Berne, Sins Invalid

Table Discussions

5:00 – 6:30: Dinner and Reception

6:30 – 8:00 Sneak-preview screening

FIXED: The Science/FIction of Human Enhancement

Producer/DIrector Regan Brashear will answer questions

 Future Past Nov 1

Alberta Eugenics Awareness Week (AEAW) 2013 ~ Oct 16 – Oct 22, 2013

Please join us in Edmonton at the University of Alberta for a series of events throughout Wednesday October 16 to Tuesday October 22, 2013 that mark:

Alberta Eugenics Awareness Week (AEAW) 2013 ~ Oct 16 – Oct 22, 2013

Wednesday Oct 16 – Rob Wilson, University of Alberta, Standpoint Eugenics.  Brown-bag lunch co-sponsored with the Dept. of Educational Policy Studies.  Noon-1:30pm, 7-102 Education North.

Thursday Oct 17 – Eugenics and Indigenous Perspectives.  Discussion panel co-sponsored with the Faculty of Native Studies.  Panelists: Tracy Bear, Joanne Faulkner, Jerry Kachur, Noon-1:00pm, 2-06 Pembina Hall.

Friday Oct 18 – 1) Persons’ Day Panel: Feminism, Motherhood and Eugenics: Historical Perspectives. Panelists: Wendy Kline, University of Cincinnati, Erika Dyck, University of Saskatchewan, and Molly Ladd-Taylor, York University. Noon – 1:00 pm, Henderson Hall, Rutherford South. Wheelchair accessible. 2) Wendy Kline, University of Cincinnati, “The Little Manual that Started a Revolution: How Midwifery Became a Hippie Practice”, 3:30 – 5.00pm, Assiniboia 2-02A, co-sponsored with the Departments of History and Classics, and Women’s and Gender Studies. 3) FIXED: The Science/Fiction of Human Enhancement. A documentary by Regan Brashear www.fixedthemovie.com, co-sponsored with the Faculty of Rehabilitation Medicine and the John Dossetor Health Ethics Centre. Telus Centre 150.  Doors at 6:30 pm, film at 7:00 pm. Q&A with Dr. Gregor Wolbring (who is featured in the film) following the film. Wheelchair accessible and closed captioned.

Saturday Oct 19 – Team Meeting, Living Archives on Eugenics in Western Canada.  2-02A Assiniboia Hall (9:00 am – 4:30 pm) Lunch provided; please RSVP to moyra@ualberta.ca by Noon Oct 16th.

Monday Oct 21 – 1) Joanne Faulkner, University of New South Wales, The Politics of Childhood and Community Identity.  Noon – 1:00 pm in 7-152 Education North.  Co-sponsored by the Departments of Educational Policy Studies and Human Ecology.  2) World Premiere “Surviving Eugenics in the 21st Century: Our Stories Told” 7:00 pm – 9:15 pm Metro Cinema at the Garneau, 8712 – 109 Street NW, Edmonton. Trailer: http://youtu.be/QoM12GAJm8I; closed captioned and ASL interpretation; wheelchair access through the alley entrance.  Please sign up in advance at Facebook to help us with numbers!

Tuesday Oct 22 – 1) Joanne Faulkner, University of New South Wales, The Coming Postcolonial Community: Political Ontology of Aboriginal Childhood in Bringing Them Home.  4.00 – 5.30pm in Assiniboia 2-02a.  Co-sponsored with the Departments of Philosophy and Sociology.  2) Difference and Diversity: An Evening of Performances.  Featuring CRIPSiE (formerly iDance), a reading by Leilani Muir, the art work of Nick Supina III, and much more.  Education North 4-104. Doors at 6:30 pm, performances at 7:00 pm.  Please sign up in advance via Facebook to help us with numbers!

ASL Interpretation can be arranged for events, please contact moyra@ualberta.ca prior to the event.

All Events are FREE and OPEN TO THE PUBLIC!

All events are at the University of Alberta, Edmonton.

Difference & Diversity: An Evening of Performances

As part of Alberta Eugenics Awareness Week (AEAW), Living Archives on Eugenics in Western Canada invites you to an evening of performances celebrating difference and diversity in multiple forms.

Performances will include:
Musical Guests
CRIPSiE (formerly iDance)
Art work by Nick Supina III
Leilani Muir reading from her autobiography
A surprise performance by a member of the Living Archives Team
And others!

Date: Oct 22, 2013
Time: Doors open at 6:30pm
Performance at 7pm
Location: Arts Based Research Studio, Education North (4-104),
University of Alberta

Free admission
Free snacks and refreshments
Wheel chair accessible
ASL interpretation available upon advance request

For more information or to request ASL interpretation, please email: emkenned@ualberta.ca
Sponsored by the Living Archives of Eugenics in Western Canada: http://www.eugenicsarchive.ca

If you are on facebook you can invite your friends and RSVP to this event here:

 

Surviving Eugenics in the 21st Century: Our Stories Told

Join us in Edmonton on Monday October 21, 2013 at the Metro Cinema at the Garneau for the world premiere of Surviving Eugenics in the 21st Century: Our Stories Told. A series of unique short videos, survivors of Alberta’s eugenic era share their stories. What does eugenics mean now for a variety of people parenting, or considering parenting in contemporary Alberta?

Watch the trailer (at the end of this post!)

The ideas and practices aimed at improving “human breeding” known as eugenics were influential across North America in the first half of the 20th century. The Sexual Sterilization Act of Alberta was law in the province from 1928 until 1972 and was aimed to prevent what it called the “multiplication of the evil by transmission of the disability to progeny”.

The province of Alberta occupies a special place in this history. First, it is the province in which the vast majority of eugenic sterilizations in Canada were performed (approximately 90%), with British Columbia being the only other province to pass involuntary sterilization legislation that was explicitly eugenic. Alberta’s eugenic sterilization program was vigorously implemented until the repeal of the Sexual Sterilization Act of Alberta in 1972. Secondly, it was against the Province of Alberta that Leilani Muir won a landmark legal case in 1996 for wrongful sterilization and confinement, a case that has helped to preserve a rich documentary basis for understanding the history of eugenics in Western Canada.

The typical grounds for eugenic sterilization were that a person’s undesirable physical or mental conditions were heritable, and that those persons would not make suitable parents. Central amongst those targeted by such eugenic practices were people with a variety of disabilities, especially (but not only) developmental disabilities. Yet many other marginalized groups— single mothers, First Nations and Métis people, eastern Europeans, and poor people—were also disproportionately represented amongst those subject to eugenic ideas and practices, such as sterilization. An understanding of why, and of how eugenics operated as it did in Western Canada, is relevant not only to the 3.6 million Canadians with a disability, but to all Canadians who embrace human diversity and strive to build inclusive communities.

Surviving Eugenics in the 21st Century: Our Stories Told premieres at the Metro Cinema at the Garneau (8712 – 109 Street, Edmonton) on Monday October 21, 2013. Doors open at 6:30 pm and the film begins at 7:00 pm.

Join the film-makers, survivors, and other interviewees present for this world premiere!  Closed captioned (CC).  Sponsored by the Living Archives on Eugenics in Western Canada www.eugenicsarchive.ca  FREE ADMISSION

The trailer: http://youtu.be/2NREI24ugT0

Ontario allowed decades of child abuse – Lawsuit goes ahead

Carol Goar with the Toronto Star has written an article about the Class action lawsuit pitting survivors of an inhumane psychiatric institution against their tormentors and announces that they will finally go to court.

There can be no turning back. The trial date is set. Courtroom 5 in the old Canada Life building is booked for two months. The two sides have agreed in writing to be there. The witnesses are ready to testify.

“We’re going ahead no matter what,” said Kirk Baert, the lead lawyer in a historic class action suit against the government of Ontario.

He never doubted this moment would come. His clients were less sure. For three years, the province used every tactic in the book — withheld documents, missed meetings, deadline extensions — to delay the case. Baert’s greatest concern was that hundreds would die waiting.

Approximately 3,900 former residents of the Huronia Centre, a provincial facility for developmentally disabled children, are still alive. There were 4,500 when Baert launched the $1-billion lawsuit in 2010.

He intends to prove beyond reasonable doubt that the Ontario government knew about the physical, sexual and emotional abuse of these vulnerable youngsters and did nothing to stop it. “Even convicted murderers got better treatment,” he maintains, rehearsing one of the lines he will use in court.

The trial begins on Sept. 16. Baert will deliver a three-hour opening statement chronicling the tragic history of the Huronia Regional Centre, once known as the Orillia Asylum for Idiots. He will then call on the two lead plaintiffs, Patricia Seth and Marie Slark, to recount what happened to them at Huronia, what they saw, how they survived and how they are scarred by the discipline meted out by sadistic provincial employees. Both women are in their late 50s

Seth, diagnosed as “mildly retarded,” was surrendered by her family at the age of 7. She spent 14 years in Huronia. She remembers being hit with a radiator brush for misbehaving and held upside down by her heels in ice-cube-filled water for refusing to eat.

Slark, similarly labelled, was committed to Huronia at 6 years of age. She spent nine miserable years there, then was sent to an “approved home” under Huronia’s supervision, where she was drugged and sexually molested.

Others were more savagely beaten but they have lost their memories, they can’t communicate or they are among the 2,000 children buried in Huronia’s cemetery.

One of those victims was Richard, an 8-year-old boy with Down syndrome. His sister, Marilyn Dolmage, was so upset by his death that she trained to be social worker and got a job at Huronia. She will describe children locked in caged cots, being punished for bodily functions they could not control, cowering from the staff.

Compelling as his witnesses’ testimony will be — and Baert expects to call 10 more former residents, 10 former employees of Huronia, doctors, child development specialists, historians, demographers and managers of similar institutions o the stand — he regards the government’s own paper trail the most incriminating piece of evidence.

“I don’t need to win this case with witnesses. It will prove itself on the documents. They (provincial officials) kept recording that there was a problem, but they never did anything to fix it.”

Huronia closed in 2009. The abused children became its “forgotten victims.”

The legal team has amassed 65,000 records — letters from distraught parents, bureaucratic memos, ministerial directives, police reports, eyewitness accounts, coroners’ reports, inspectors’ reports, newspaper exposés and the findings of three provincial commissions of inquiry. They tell the story in graphic detail.

Baert, a partner at Koskie Minsky, specializes in David-vs.-Goliath class-action suits. In 2007, he won a $4-billion judgment on behalf of aboriginal students sent to government-approved residential schools. In 2010, he won $36 million in damages for homeowners in Port Colborne whose properties were contaminated by Vale Inco’s nickel operations.

He is confident he will win this case. “They underfunded this institution because they could. They knew the people held there couldn’t fight back.”

Every so often Baert’s professional mien slips. He detests bullies. He is disgusted by public officials who refuse to accept responsibility for mistreating vulnerable children.

“Huronia has no excuse for doing a crappy job” He catches himself. “I won’t say crappy in court.” Then Baert pauses. “Maybe I will. What they did stank.”

The original article can be found here: http://www.thestar.com/opinion/commentary/2013/09/09/ontario_allowed_decades_of_child_abuse_goar.html

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

Let’s make a baby: Pushing the boundaries of conception – CBC Radio One

CBC Radio One is exploring the ethical ramifications of cutting-edge reproductive technologies, such as three parent in-vitro fertilization and post-menopausal pregnancy. From June 25, 2013 through August 29, 2013 on CBC Radio One, Tuesday at 7:30 pm and Thursday at 9:30 pm. All ten episodes are available online here: http://www.cbc.ca/thecurrent/2013/08/06/lets-make-a-baby-pushing-the-boundaries-of-conception/

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/

Eugenic sterilization NOW

courtesy of Miroslava Chavez-Garcia and from The Modesto Bee:

Female inmates sterilized in California prisons without approval

Published: July 7, 2013 Updated 8 hours ago

http://www.modbee.com/2013/07/07/2796548/female-inmates-sterilized-in-california.html

Irish government to pay survivors of Magdalene laundries

Ireland’s eugenics program: It was slave labour in the twentieth century. For almost 200 years, thousands of women and young girls, judged to be “fallen women”, were sent to live in Catholic institutions throughout Ireland. Some were sent to the “asylums” …sounds similar to Alberta Eugenics program?
Today, the Irish government announced it will pay survivors 11,500 Euros to women who spent three months or less in a laundry and up to a maximum of 100,000 Euros for ten years or more.
The full article can be found here: http://globalnews.ca/news/674185/irish-government-to-pay-survivors-of-magdalene-laundries/

Alberta Eugenics Awareness Week 2012: Highlights Video

Well, at last, here it is.  Watch, enjoy, share, like.