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

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

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.

FIXED:The Science/Fiction of Human Enhancement

How do technologies that claim they will change our bodies and minds challenge our views of disability and normalcy? How might this affect what it means to be human in the twenty-first century?

These are the questions tackled in FIXED: The Science/Fiction of Human Enhancement. It’s a haunting, subtle, urgent documentary that takes a close look at the drive to be “better than human” and the radical technological innovations that some are advocating we embrace. Producer/director Regan Brashear has working on labor, race, youth, LGBTQ, and disability issues for over twenty years through documentary film, union organizing, community forums, and grassroots activism. She is co-founder of Making Change Media, which produces videos for non-profits and labor unions, as well as independent long-form documentaries such as FIXED.

Regan will be interviewed by Gina Maranto, Director of Ecosystem Science and Policy at the University of Miami’s Leonard and Jayne Abess Center, and author of Quest for Perfection: The Drive to Breed Better Human Beings.  Please join us on Thursday October 3 at 11 am PT/ Noon MST / 2 pm ET for Talking Biopolitics a live web-based interview and conversation with Regan Brashnear, Gina Maranto, and you.

Registration is required! You can register here: registration. You can read more about the film and Regan and Gina here

The Living Archives on Eugenics in Western Canada is hosting the Alberta Premiere of FIXED: The Science/Fiction of Human Enhancement with co-sponsors the Faculty of Rehabilitation Medicine and the John Dossetor Health Ethics Centre, University of Alberta, on Friday October 18, 2013 at the Telus Centre 150, University of Alberta. Doors at 6:30 pm, film at 7:00 pm. Dr. Gregor Wolbring will join us after the film for questions and answers via SKYPE. Admission is FREE and this event is open to the public! Plan to attend!

Disability is a political issue not a personal one –

The Right to Not to Work: Power and Disability by Sunny Taylor

“The disabled are viewed with sympathy as victims of “bad luck” who will simply have to accept disadvantage as their lot in life, not as an identity group that is systematically discriminated against. Unlike sexism and racism, which are perceived to be significant social problems, disability falls under the social radar and disablism is not recognized as a damaging or even particularly serious form of prejudice.” The public remains unconvinced that the struggle for disability rights is actually their sturrgle as well….

The entire article and self-portrait can be found here: http://monthlyreview.org/2004/03/01/the-right-not-to-work-power-and-disability

Continue reading

Hope is NOT a Plan

Canadians with disabilities are about one and a half times as likely to be victims of violence as other Canadians. People with disabilities in Canada have civil rights on paper but not in practice. Canadian citizens, everyday, have their civil rights ruthlessly violated by their government.  This has to be stopped, because Hope is Not a Plan!

Continue reading

Call for Papers for a Special Issue of the Peace Studies Journal Theme: “Disability Studies and Ability Studies: Two Lenses to Investigate Peace

Call for Papers for a Special Issue of the Peace Studies Journal
www.peacestudiesjournal.org

Theme: “Disability Studies and Ability Studies: Two Lenses to Investigate Peace

 

Guest Editor:

Gregor Wolbring, Community Rehabilitation and Disability Studies,

Dept. of Community Health Sciences, University of Calgary

 

The Peace Studies Journal is an international interdisciplinary free online peer-reviewed scholarly journal.

 

Disability Studies is an interdisciplinary/multidisciplinary academic discipline that investigates the situation disabled people face [1] involving activists, teachers, artists, practitioners, and researchers [1]. Ability studies is linked to disability studies in the sense that disability studies covers people who are impacted by body related (physical, mental…) ability expectations and that the term ableism (the cultural dynamic that one perceives certain abilities as essential) was coined by disabled people to highlight the negative situation disabled people experience because they are labeled as not having the required ability expectations. However ability studies goes beyond body related ability expectations. Ability Studies investigates in general how ability expectation (want stage) and ableism (need stage) hierarchies and preferences come to pass and the impact of such hierarchies and preferences [2-3]. Ability Studies investigates: (a) the social, cultural, legal, political, ethical and other considerations by which any given ability may be judged, which leads to favoring one ability over another; (b) the impact and consequence of favoring certain abilities and rejecting others; (c) the consequences of ableism in its different forms, and its relationship with and impact on other isms [2-3].Peace is an ever evolving concept whose relation to disabled people and to ability expectations is so far under-investigated. We accept any peace related topic as long as it engages with it through an ability studies lens or disability studies lens or both.

We invite potential contributors (scholars, activists, and community leaders to submit

articles of 3000-5000 words (excluding figures and tables) of original research and scholarship (empirical, theoretical and conceptual)that engage with the concept of peace through the disability studies lens, the ability studies lens or both.

Please submit full article to the Guest Editor via e-mail at:
gwolbrin[at]ucalgary.ca by 15 July, 2013

Every submitted article will be subject to anonymous peer review and recommendations arising.

As to possible areas linked to the theme the below is a sample list of possible topics”

 

 

Concept of Peace;

Peace between human and nonhuman animals;

Peace between humans and the environment;

Peace and eco-ability;

Peace and eco-ableism;

Peace and disabled people;

Peace and ability expectations;

Peace and active citizenship;

Peace and law

Peace and community;

Future of Peace

Peace and activism and social movements

Peace and science and technology;

Peace and human enhancement;

Peace and subjective well-being;

Peace and body image;

Peace and Disablism;

Peace and medical and social health policies

Peace and elderly people, youthism and ageism

The ethics of Peace;

Peace and resolution of ability expectation conflicts

Peace and transformative ability expectations;

Peace and social change discourses

Peace and ability privilege

Peace and resilience

Peace and adaptation

Peace and transformative justice

Peace and energy insecurity

Peace and climate change insecurity

Peace and water and sanitation insecurity

Peace and human insecurity

Peace within families

Transformative peace

Peace and sport

 

 

Reference List

1.                    Society for Disability Studies. Guidelines for disability studies programs Society for disability studies [Online], 2012. http://disstudies.org/guidelines-for-disability-studies-programs/.

2.                    Wolbring, G., Why NBIC?  Why Human Performance Enhancement? Innovation; The European Journal of Social Science Research 2008, 21 (1), 25-40.

3.                    Wolbring, G., Expanding Ableism: Taking down the Ghettoization of Impact of Disability Studies Scholars. Societies 2012, 2 (3), 75-83.

 

 

 

 

Cheers Gregor

 

Dr. Gregor Wolbring

Associate Professor Community Rehabilitation and Disability Studies

Dept. of Community Health Sciences

TRW Building, 3d31

3330 Hospital Drive NW

T2N4N1

Faculty of Medicine

University of Calgary

Calgary, Canada

Email: gwolbrin[at]ucalgary.ca

Phone: 1-403-210-7083

 

Parents try to force surrogate mother to abort their disabled baby

Blogger Cassy Fiano writes about parents who try to  force their surrogate to abort their disabled baby. Cassy is has two sons, one has Down Syndrome.

Crystal Kelley wanted to give the gift of a baby to a family who couldn’t have children. She also needed the money that surrogacy brings. And so, she ended up becoming a surrogate mother to a couple in her state of Connecticut who had three children but wanted more. The first half of the pregnancy was friendly and happy, with Kelley and the parents communicating regularly.

Then there was an irregular ultrasound. After several more ultrasounds, the picture was clear: this was a baby who would be born with some disabilities. She had a cleft lip and palate, a cyst on her brain, and a heart defect. The baby’s parents immediately began to pressure Kelley to have an abortion, claiming it was the more “humane” option. Now, most decent people wouldn’t consider it humane to rob a child of her life simply because she might have a disability. This was the way that Kelley felt, and she refused to have an abortion

Continue reading

Meet the New Eugenics, Same as the Old Eugenics

From the Center for Genetics and Society blog, by Gina Maranto, Biopolitical Times guest editor, March 4, 2013

The unfortunate truth is that discredited ideas never do die, they just rise again in slightly altered forms—witness eugenics. Despite the horrors perpetuated in its name, including forced sterilization and the Holocaust, the eugenic impulse is with us still. One of the forms it takes is schemes for “improving” offspring through the selection and manipulation of embryos.

In the last year or so, one neo-eugenic advocate in particular has been garnering media attention. He’s Julian Savulescu, holder of an array of titles, including an endowed chair and directorship of a center at the University of Oxford funded by the Uehiro Foundation on Ethics and Education.

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Articles and Audio clips on the closure of Michener

Headlines read: Michener Centre formerly the Provincial Training School (PTS) for Mental Defectives closes – celebration for some but not for everyone

A series of articles have been written about the closure of the Michener Centre.  Living Archives team members, Leilani Muir and Bruce Uditisky have commented to reporters about their reactions to the closure. Both applaud the decision but many others criticize the decision to close Michener. The loss of jobs and the disruption for current residents are concerns for supporters of the institution.  However, amidst mixed reaction the Michener stands as a reminder of our recent history of eugenics and the institutionalization of thousands of individuals. The shift towards a more inclusive society and away from isolation and initialization is a change towards recognizing and perhaps even appreciating human variation.

Here are links to several different articles: Continue reading

“A fundamentally eugenic rhetoric”

I have no desire to rekindle the flame of this man’s still unrepentant posture that ending Tracy’s life was a blameless act. My quarrel here is not with a Saskatchewan farmer, or an Ontario mother, or any other horribly misguided parent seeking to end the life of a disabled child. My quarrel is with the clichés and platitudes that both foster and condone a very particular homicidal impulse. It is a preposterous notion that Tracy’s life did not conform to the law of nature that Robert somehow epitomizes.  The simplistic morality of pitting the “law of nature” against the “law of a nation” – the core assertion of Global’s Taking Mercy – must be exposed for what it is: a fundamentally eugenic rhetoric.

Check out Catherine Frazee on Global’s “Taking Mercy”, and on the Latimer case more generally, from whom this paragraph is taken.

Maine law changes disparaging language in state statutes, programs

from Bangor Daily News Maine, April 9th, 2012:

Christina Mailhot got teased a lot as a child.

Born with Down syndrome, words like “retard” were flung at her every day, meant to be insulting. So when Mailhot, now 33 and a member of the Augusta-based self-advocacy group Speaking Up For Us, heard state officials using “mentally retarded” in relation to people with disabilities, she cringed.

“It’s legal talk; they’re legal words saying we are stupid,” she said. “I’m not that stupid, you know.”

Soon, such words will be wiped from Maine law and removed from the names of some Department of Health and Human Services programs. They will be replaced with phrases like “intellectual disability” and “person with a disability.”

Read the whole article here

Offensive words and phrases and their recommended replacements:

  • Afflicted (eliminate or use “affected”)
  • Crippled children (children with disabilities)
  • Deranged (persons who have mental health diagnoses)
  • Drunkard (person with alcoholism)
  • Handicapped (eliminate as a noun, as in “the handicapped.” Replace with “disabilities” when paired with a person, as in “child with disabilities”)
  • Lunatic (person declared legally incompetent)
  • Mental deficiency (cognitive disability)
  • Mental retardation (developmental disability)
  • Mentally defective (has a cognitive disability)
  • Senile (eliminate or use “people with dementia” or “people who have dementia”)

CCD Calls on Global to Stage Follow-up Episode

Recently, Dick Sobsey wrote about the Live Euthanasia Debate airing on Global Television’s 16 x 9 program.

The show, “Taking Mercy”, also featured a Live Blog including comments from several members of the What Sorts Network.

Alex Schadenberg, Executive Director with the Euthanasia Prevention Coalition, wrote a post condemning the one-sidedness of the show and comparing the “propaganda” in the 16 x 9 episode with the eugenic attitudes that led to the Nazi euthanasia program.

The Council of Canadians with Disabilities has also responded to the lack of an opposing perspective in the so called “debate”. The CCD is challenging Global to stage a follow-up episode.

We are challenging Global, in the name of journalistic balance, to stage a follow-up episode featuring persons with disabilities who want to live and who see a danger in opening up the debate on euthanasia. Only good can come from providing an opportunity for a broader, fairer public discourse.

If you agree that the perspective of those opposed to euthanasia should be represented in a follow-up episode, please take a minute to write to Global representatives at the addresses listed in CCD’s response to “Taking Mercy”.

A Prequel to Gattaca?

The 1997 film Gattaca, written and directed by Andrew Niccol, portrays a futuristic society where babies are genetically engineered according to parental references.  The film features a society that consists almost exclusively of such artificially built individuals, with those who are born in the archaic, natural manner occupying the fringes of this society.  In order to protect the rights of what are referred to as the “valids” and thereby keep out the inferior “invalids,” each individual’s genetic material is constantly sampled and monitored.  Every person’s DNA is stored in a database, making multiple scans and random genetic sweeps in the workplace very efficient.  The story follows an “invalid” who has a dream of becoming an astronaut, a job open only to the genetically enhanced elite.

But my intention here is not to provide a synopsis of the film, which is very good and is certainly well worth the time it takes to watch.  Rather, I wanted to Continue reading

If It Ain’t Broke, Don’t fix It, But What if It’s Enhanced?

Gary Karp, who sustained a spinal injury in 1973, which prevents him from using his legs states that although his spine is technically broken, he is not.  Although he confesses that he would want to walk again, he clarifies that he would not want to do so at any cost.  He writes (click here for the entire blog post):

Well, it’s not about whether I want to walk. Of course I want to walk. That is, if I could walk the way I did before my injury. Easily, without fatigue, secure in my balance, painlessly. That’s a pretty tall order (especially given that I’m six foot two!).

The problem with paralysis, Gary argues, is that it is viewed as a thing to be fixed and thus people with injuries like Gary’s are viewed as damaged or broken.  He writes:

If the prevailing view of paralysis—or having a disability of any kind—is that the most important thing is to try and fix people (because, of course, what else could broken people want?), then how will I be viewed as the whole person I am—in the context of my paralysis? If I’m damaged goods, then I’m a person whose life can only be improved—much less be a meaningful and satisfying life—if someone repairs my brokenness.

His view on technological advancements like the exoskeleton is this:

What, then, of the exoskeleton? I don’t see it as something that will fix me, that will fill in something horribly missing in my life. After 38 years I’m so thoroughly adapted that not being able to walk is normal. For me.

The exoskeleton, however, is just a hint of what is possible.  What lies beyond is far from mere fixing; the possibilities point to enhancement.  If Gary and others like him decided to “upgrade” their legs with some future technology inspired by the exoskeleton, would those with “regular” legs be in need of fixing?  In a world of enhanced humans, would all people be born damaged or broken?

Oscar Pistorius is a contemporary example of what may one day be possible.  Oscar is a double amputee and a world class sprinter.  His legs, which were made by the same company the CEO of Ekso Bionics worked for at the time, have been the cause of the IAAF’s ruling making him ineligible for competitions conducted under its guidelines.  This decision was eventually reversed, but the reasons for reversal were not that the use of artificial legs is not an issue, but rather that they do not give him any advantage over other competitors.

Of course, there must be some restrictions set on competitions.  For instance, using a bicycle or a motorized vehicle to win the 100m dash certainly does not seem to be in the spirit of that particular sporting event and so the use of mechanized legs can surely lead to questions.  However, the issue of advantage in sport due to technological advancements does not begin with Oscar Pistorius.  Shouldn’t better running shoes fall into this same category?  What about better diets and certain dietary supplements?  What about the advancement in training efficiency?  Are these not technological improvements?  I doubt that Coroebus of Elis, who won the stadion race in 776 B.C.E., would be a match for Usain Bolt, who won several races at the 2008 Olympic Games.  Does fairness dictate that athletes should have equal access to advantage conferring technologies?  So, in the case of the IAAF’s objections to Pistorius,  was the underlying issue of fairness related to the fact that his legs were not equally accessible to other athletes?  What about Usain Bolt’s physiology?  Is it on par with mine?  If I trained as he does, ate as he does, slept the same amount of time he does, etc., would I also be able to run 100m in 9.72 seconds?  I doubt it!  Does Bolt have an unfair advantage over me?  Insofar as he is better predisposed than I for such great sprinting performance, I guess he does have an unfair advantage.  Do I need fixing?  Am I broken?  Well, no.  I’m not a sprinter, so I don’t need fixing, right??  What about Coroebus of Elis?  Was he broken?  Well, no.  He won the first ever recorded Olympic race!

I am certainly not making claims about the IAAF’s decision, nor about the reversal of the IAAF’s decision by the Court of Arbitration for Sport.  I also am not questioning the logic behind the rules and boundaries in sporting events.  What I question, however, is whether any competitors can truly be said to be advantage-less?  And I think the answer is no!  If that is the case, however, then it would seem that the point of contention about Pistorius’ alleged “edge” over his co-competitors might actually stem from a deeper apprehension about what our society considers to be abnormal.  Could it be that both Gary (who cannot walk) and Oscar (who can outrun much of his “normal” competition) are somehow viewed in terms of being in need of “fixing” because they are abnormal?  If this is the case, then it’s not merely an ableist fear because Oscar Pistorius, to my mind, is more than able to win races against “normal” sprinters.  Perhaps people are suspicious of difference?  I just hope they never figure out that taller people take bigger steps when they sprint.

Is Mount Everest the Proper Political Podium for Individuals with Disabilities?

Sudarshan Gautam, a 25-year old Nepalese man living in Calgary, lost his arms in an accident 15 years ago.  The experience of being both pitied and laughed at by his family and school friends, as well as the general negative attitude of others toward his disability prompted him to prove that losing his arms did not make him disabled.  To this end, he learned to drive a non-modified motorbike and a car with manual transmission.  He also declared that he would summit Mount Everest in 2012.

Mount Everest, being the highest point on earth, gets its share of “firsts.”  Following the famous first successful ascent by Edmund Hillary and Tenzig Norgay, there had been a constant number of both legitimate and eyebrow raising “firsts.”  On the one end of the spectrum, there was the first ascent without oxygen (1978) by Reinhold Messner as well as the first winter ascent by Leszek Cichy and Krzysztof Wielicki in 1980.  On the other end of the spectrum, there was a dangerous helicopter landing in 2005, an insane ski descent, a sleep-over on the summit, etc.  Although the mountain has been commercialised for many years now (with “tourist” climbing companies charging as much as $70,000 per person to lead clients to the roof of the world), the mountain continues to be both a dangerous place and a place of infinite “firsts” with individuals always willing to risk their lives (and the lives of other people on the mountain since rescue efforts at such extreme altitudes are very dangerous endeavours) to be the youngest, the oldest, the fastest, etc. to reach the summit.

Climbing Everest is definitely a personal accomplishment and it has certainly been quite a political endeavour ever since people had set their minds on climbing it.  I am not surprised that Sudarshan Gautam is hoping to promote his noble cause (of advertising abilities of individuals with disabilities) by attempting to climb the highest mountain in the world.  There have been other individuals with disabilities who have successfully navigated the treacherous ridges of Everest.  Erik Weihenmayer was the first blind person to summit Everest and Mark Inglis was the first to do so without legs.

The questions, however, that seem to bother me are Continue reading

Limelight Film Festival: Edmonton

The Limelight Film Showcase, Day 2, is TOMORROW, i.e., Tuesday 18th October, 2011, at the University of Alberta campus in Edmonton.  All events are in Myer Horowitz Theatre in the SUB Building, and the festival runs from noon until around 10pm and includes not only short and feature films, but also live dance and movement performances.  Check out the schedule via the festival page here.  All events are free and open to the public.

Wallace Kuralt’s era of sterilization

The Charlotte Observer has recently published an article on the story of Wallace Kuralt, a primary figure behind the eugenics movement in North Carolina. The article weaves between Kuralt’s personal story, his struggle to find a job during the depression, his desires and motivations, with the broader history of eugenics in North Carolina and the United States:

Compassionate. Visionary. A champion of women and the poor.

That’s the reputation that Wallace Kuralt built as Mecklenburg County’s welfare director from 1945 to 1972. Today, the building where Charlotte’s poor come for help bears his name – a name made even more prominent when his newscaster son, Charles Kuralt, rose to fame.

But as architect of Mecklenburg’s program of eugenic sterilization – state-ordered surgery to stop the poor and disabled from bearing children – Kuralt helped write one of the most shameful chapters of North Carolina history.

You can read the rest of the article here.