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

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

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.

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!

Former residents settle Huronia lawsuit

The Huronia Regional Centre – this case has settled; there will not be a trail. To read the settlement agreement go to: http://www.kmlaw.ca/site_documents/080659_SettlementAgreement_17sep13.pdf

Members of the lawsuit looking for information can call 1-866-777-6311, or email huroniaclassaction@kmlaw.ca

~The History~

The Huronia Regional Centre located in Orilla, Ontario, was operated by the Ontario government from 1876 to March 31, 2009. It was the first institution of its kind in Ontario and was designed to house individuals who were deemed to have cognitive and other disabilities. Individuals could be admitted by parents and guardians, from training schools, or through the Children’s Aid Society.
At its peak, Huronia’s population exceeded 2,500 people. By the mid 1970s, the Ontario government operated 16 such facilities across the province.
When Huronia opened, there were no community services and supports available for individuals with developmental disabilities. Huronia was one of the last three facilities of its kind in Ontario, along with the Southwestern Regional Centre in Chatham-Kent and the Rideau Regional Centre I Smiths Falls, all of which closed in 2009.
~The Class Action~
Two former residents of the facility, assisted by their litigation guardians, are proceeding with a class action against the Ontario government to seek justice and compensation for severe abuse they and other class members suffered while residing in Huronia.
On July 30, 2010 the Ontario Superior Court of Justice certified this lawsuit as a class action for residents living at Huronia between 1945 and 2009 and other family members. The claim alleges that the Ontario government was negligent and breached its fiduciary duties to the residents and their families in the operation, control, and management of Huronia.

It is alleged that residents of Huronia suffered inhumane treatment and abuse at the hands of some of the staff. The allegations include severe mental and physical punishments for “acting out”, rooms were unnecessarily locked creating a prison-like environment, unnecessarily medicating the residents, residents were often not bathed, and forced to work without pay.

The class action will seek to provide evidence that officials knew about the abuse taking place but did not take the required action to stop it. Examples of such evidence include:

  • A 1971 report by Walter B. Williston, which was sponsored by the Ministry of Health, examined the conditions of Huronia. The report concluded that severe abuse and inadequate facilities were present at Huronia.
  • A 1960 article by Pierre Berton entitled, “What’s Wrong at Orillia – Out of Sight, Out of Mind”, which describes what he called “atrocities” at Huronia, including extreme overcrowding and physical and emotional abuse. This article ultimately led to Parliamentary debate.
  • A 1973 report by Robert Welch, Secretary for Social Development, calling for the creation of appropriate residential homes in the community to facilitate deinstitutionalization.
  • In 1976, a report authored for the Minister of Community and Social Services known as the “Willard Report” found serious allegations about the administration at Huronia. The report made several recommendations.
  • Affidavits by both plaintiffs, corroborated by their litigation guardians, chronicling the abuse each experienced while residing at Huronia.
  • Affidavits from former staff and family members of residents.

Since 1876 thousands of people in Ontario have resided in facilities like Huronia.  There have been many accounts of abuse taking place at these facilities, however little has been done to help the victims.

The victims of these abuses are entitled to adequate compensation and an acknowledgement from the Ontario government that it failed to live up to its obligations to care for these vulnerable individuals.

The Representative Plaintiffs

Patricia was admitted to Huronia at the age of six in 1964. At the time of her admission , Patricia was labelled as “developmentally challenged”. Everything in her life was dictated by Huronia staff.  Patricia recalls being repeatedly abused and punished – hit by a fly swatter or radiator brush, and held upside down in ice cold water. She was also administered medication to pacify her when she was found to be “speaking out”. Patricia was unable to report the abuse she experienced or saw at Huronia for fear of repercussion and threat of increased abuse. Patricia is now 52 years of age and living independently with assistance from the Ontario Disability Support Program.

Marie was admitted to Huronia at the age of seven in 1961. At the time of her admission, like Patricia, Marie was labelled as “developmentally challenged”. While at Huronia, her life was regimented and controlled and she was placed on medication to pacify her for “acting out”. At 16 she was placed into an “approved home” off the grounds of Huronia (but still operated by Huronia) where she was threatened, teased and physically and sexually abused. She did not report this, because she feared being returned to the centre. Marie lives in her own apartment   and supports herself.

Both women understand that their greatest obstacle has not been their disabilities, but the harm they experienced through institutionalization. They want this legal action to help others and ensure similar systemic abuse can never happen again.

The Litigation Guardians

To assist Patricia and Marie with this complex litigation, Marilyn Dolmage, a former social worker at Huronia, and her husband, Jim Dolmage, have agreed to act as Marie and Patricia’s litigation guardians respectively. The Dolmages have been friends with Marie and Patricia for many years. Both Marilyn and Jim have worked alongside people with disabilities in the past and are well informed in this area.

Huronia Trial Management Timetable:

(see the original source for links to many of these original documents)

September 17, 2013: This case has settled; there will not be a trial.

Important Dates ( these dates have links to original documents in the online source, see link at the end)

September 17, 2013 - This case has settled; there will not be a trial.

June 7, 2013 – An article written by Carol Goar entitled “Ugly secret of Ontario psychiatric hospitals won’t stay hidden,” has been published in the Toronto Star.

June 3, 2013 - The World this Weekend (CBC), June 2nd, Sunday edition,  featured a piece on the Huronia Class Action.

May 30, 2013 -  The survivors of the Huronia Regional Centre Patricia Seth and Marie Slark, along with their Litigation Guardians Marilyn and Jim Dolmage and legal counsel held a press conference today at Queen’s Park.

May 27, 2013 – The parties have exchanged responding expert reports in preparation for trial.

April 2, 2013 – The parties have exchanged expert reports in preparation for trial and in accordance with the trial timetable.

February 8, 2013 - Master Glustein presided over the Plaintiff’s motion to compel the Defendant to answer refusals made on the examination for discovery of Mr. Brian Low. Master Glustein ordered the Defendant to answer a number of questions that it had previously refused.

December 18, 2012 - A motion in this action will be heard by the Court on February 8, 2013. The motion relates to refusals made on examinations for discovery and documentary productions issues. The Plaintiff is seeking an Order from the Court that the Crown answer certain questions and produce further documents.

October 10, 2012 - In the process of answering undertakings and written questions for discovery, the Defendant advised that it had located a significant source of further documents to be produced.  The production of documents in this action was to have been completed February 29, 2012.  The Defendant has already produced over 50,000 documents to date.  In a case conference with the Honourable Justice Archibald, the Defendant sought and were granted an extension of time for certain aspects of the previous timetable (from March 7, 2012).  The trial of this action is still scheduled for September 2013.

October 1, 2012 - This action continues to proceed towards trial scheduled for the Fall of 2013.  The Plaintiffs have delivered a Request to Admit to the Defendant asking them to admit certain facts in advance of trial.  The Defendant’s responses are due November 1, 2012.

April 25, 2012 - The Plaintiffs completed three days of examinations for discovery of the Defendant between April 23-25, 2012.  The action continues towards trial which is scheduled for September 2013.  Expert reports, requests to admit, answers to questions taken at examinations for discovery are all expected to be completed in the coming months.

March 8, 2012 – A revised timetable has been set by the Honourable Justice Archibald that provides for this action to proceed to trial September 30, 2013. The next step in this proceeding is for the Plaintiff to complete the examinations for discovery of the Defendant, which are set to be completed by May 15, 2012.

February 24, 2012 - The Plaintiffs completed the first 4 days of examinations for discovery of the Defendant.  A further 5 days of examinations are tentatively scheduled for April 2012.

February 7, 2012 - Oral discoveries (examinations) of a representative of the Defendant will take place February 21-24, 2012.

December 23, 2011 - The Defendant delivered another set of documents as part of its ongoing obligations. The Defendant has now produced over 50,000 documents. Examinations for discovery of the Defendant are scheduled to take place in mid-February 2012.

December 2, 2011 - The Defendant delivered what is believed to be the last set of documents for the Plaintiffs’ review, bringing the total number of documents delivered to approximately 48,000.  Examinations for discovery of the Defendant is scheduled to take place in mid-February 2013.

November 17, 2011 - A trial date has been set for this action for a period of 10 weeks beginning September 30, 2013.

October 14, 2011 – The parties reached an agreement with respect to the redactions in the first two sets of documents produced by the Defendant, which averted the Plaintiffs’ motion which was scheduled for October 5, 2011.  The Defendant has produced un-redacted copies of most of the documents it previously redacted.  The Defendant has also produced its 3rd and 4th sets of documents, which are being reviewed by the Plaintiffs.

August 29, 2011 – As a result of concern regarding the aging class  members, the Plaintiffs filed a motion to fix a trial date at the  earliest practical convenience.  The Plaintiffs believe that the age of  the class members warrants a speedy pursuit to trial.  While no date is  set for the motion it is expected to be heard shortly.

August 8, 2011 – the Defendant produced its second set of documents  (approximately 4,000 documents).  The Plaintiffs have noted similar  redactions in the documents provided as with the documents provided  previously.   The Plaintiff intends on pursuing such redactions in the  motion noted below.

August 5, 2011 - After receiving the first set of documents from the defendant (approximately 2,000 documents) it was apparent to the Plaintiffs that the Defendant redacted (blacked out) information on a number of documents they produced.  Such information redacted included  names of ministerial employees and potential witnesses, information relating to assaults on residents, admissions information, and in other cases extensive portions of a document were redacted such that the Plaintiffs could not know what information was being withheld.   It is the Plaintiffs’ position that the Defendant inappropriately redacted such documents.  The Plaintiffs are concerned that further production from the Defendant will include similar redactions.   Accordingly the Plaintiffs filed a motion today seeking the removal of such redactions from the documents already produced and those the Defendant has yet to produce.  While no date is set for the motion it is expected to be heard shortly.

Additional information on the Huronia Regional Centre class action can be found on the Koskie Minsky  LLP website here.  Legal Counsel Koskie Minsky LLP – See more at: http://www.institutionalsurvivors.com/background/huronia/#sthash.ctTmZn4L.dpuf

- See more at: http://www.institutionalsurvivors.com/background/huronia/#sthash.ctTmZn4L.dpuf

Source: http://www.institutionalsurvivors.com/background/huronia/

The story in The Star, September 17, 2013: http://www.thestar.com/news/gta/2013/09/17/former_residents_settle_huronia_lawsuit_for_35m.html

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

Judge approves man’s sterilization

It is the first time in England and Wales a court has sanctioned a man’s sterilization. A High Court judge has sanctioned the sterilization of a man “in his best interests” in a landmark legal ruling.
The 36-year-old, from the Midlands, has learning difficulties and already has a son, born in 2010, with his girlfriend.
Justice Eleanor King ruled that a vasectomy could take place after hearing that another child could cause the man :psychological harm.”
Experts said he was capable of sexual consent but did not have the capacity to make decisions about contraception.

The entire story was released today in the BBC News and can be viewed here: http://www.bbc.co.uk/news/uk-23721893

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

Call for Support – Rally May 15 from Noon – 1 pm

42 million in cuts to services for the disabled in Alberta!

Over the past several months you may have been aware that Persons with Developmental Disabilities (PDD) has been directed, along with many other social programs, to make arrangements for budget cuts. These cutbacks are happening alongside an effort by PDD to better regulate funding models for people. These changes, unfortunately, make what we need to present at this time more complicated. Administrative changes around assessing support needs is co-mingled with the severe funding cutbacks being experienced across the province of Alberta.

Continue reading

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!

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Forced Sterilization of Women and Girls with Disabilities in Australia: The WWDA submission

In November, I posted on the Australian Senate Inquiry into the forced sterilization of women and girls with disabilities.  Women With Disabilities Australia (WWDA) has just made its powerful, eye-opening submission to the Inquiry.  And there’s something you can do, pronto, that may make a difference here: endorse or support the submission.  Anyone who thinks that forced sterilization is a “thing of the past” shoudl read this submission.  First, from the submission (p.20),

There is a historical precedent in several countries including for example the USA (until the 1950s), in Canada and Sweden (until the 1970s), and Japan (until 1996) indicating that torture of women and girls with disabilities by sterilisation occurred on a collective scale – that is, mass forced sterilisation. This policy was rationalised by a pseudo-scientific theory called eugenics – the aim being the eradication of a wide range of social problems by preventing those with ‘physical, mental or social problems’ from reproducing.  Although eugenic policies have now been erased from legal statutes in most countries, vestiges still remain within some areas of the legal and medical establishments and within the attitudes of some sectors of the community:

“Baby M”, End of Life Policy, and the Stollery Children’s Hospital

Some of you may be aware of the matter of “Baby M”, involving a 2-year-old child who was admitted to the Stollery Children’s Hospital in Edmonton, Alberta, on May 25, 2012. She required a ventilator for life support. Despite the parents’ opposition to the withdrawal of life-sustaining treatment, which incorporated their religious beliefs, the Court of Queen’s Bench found that it was in the child’s best interests to terminate life support and, on September 14, 2012, ordered the withdrawal of the ventilator. The Court held that there is a general notion in society that a life dependent upon machines and without awareness is not in the best interests of any patient. On September 19, 2012, a three member panel of the Court of Appeal held that there was no error in principle in the Queen’s Bench decision and the appeal was dismissed. On September 20, 2012, the Supreme Court of Canada dismissed the parents’ application for a further stay. “Baby M’s” ventilator was removed, she suffocated, and died.

 
The parents are appealing to the Supreme Court of Canada to have Canada’s highest court decide important issues regarding termination of life-sustaining medical treatment. This decision of the lower courts and, if leave is granted, the ultimate decision of the Supreme Court of Canada will decide the process that will be used and who will make decisions to terminate life support.

These decisions of the Alberta Courts and how they will be followed in the future may ultimately affect individuals in your organization or your community. Should you believe that you, your organization, or community have a position on these life and death issues that should be heard and considered Continue reading

Forced sterilization and disability in Australia

From a “better babies” competition, 1913

 

A Senate committee was recently established in Australia to review existing law and social policy concerning the sterilization of people with disabilities.

http://www.aph.gov.au/Parliamentary_Business/Committees/Senate_Committees?url=clac_ctte/forced_sterilisation/info.htm

It seems that the inquiry is a response to public response (surprise? outrage?) to finding out that this practice continues in Australia under state and territorial legislation, and beyond it.

I suspect that the commission will find that Continue reading

Documentary on Ashley Treatment

22 May 2012 Disability Rights Washington and Video Galaxy  have great new video  on the Ashley Treatment on their website. There is also a poll on this page asking whether you believe more safeguards are needed to protect the civil rights of people with disabilities from civil rights violations and medical discrimination of the Ashley Treatment and related procedures. Continue reading

Eugenic Reasoning in Legal Phrasing?

Argentina’s strict anti-abortion laws got a minor make-over recently, as the Supreme Court of Argentina has ruled that rape victims will not be persecuted for having abortions.  The supreme court unanimously backed the decision of allowing a 15-year-old girl, who endured years of sexual abuse by her stepfather, to terminate her pregnancy.  “However, the judges said that their decision was not part of a discussion about the legalisation of abortion in Argentina, but just a clarification of existing laws” (see article).

The controversy was centred around Section 2, Article 86 of the Argentine penal code, which states that “abortion is not a punishable act ‘if the pregnancy stems from a rape or an attack on the modesty of a woman of feeble mind’” (see article).  The horrible suffering of the poor 15-year old aside, it is interesting to note that the Argentinian law’s phrasing includes “feeble mindedness” in its allowances for legal abortions.  Curiously (and I think quite tellingly), the point of debate in interpreting the law had to do with whether or not all rape victims or just those who are deemed “feeble minded” should be allowed to terminate their pregnancies.

Now, putting the phrase “feeble minded” in the sentence cannot have anything to do with informed consent (and the fact that some individuals might be deemed incapable of giving it) since the law pertains to rape cases, which, by their very definition, are instances where neither informed nor any other kind of consent can or ever is given.  What might be the reason the phrase “feeble minded” made its way into the sentence and why might it be unclear to those interpreting the law whether or not it covered all or just “feeble minded” rape victims?  If I were to venture a guess, I would say that eugenic reasoning is likely responsible for the legal phrasing the judges had such difficulty interpreting.

Martin family argues for legal funding at fatality inquiry

An article posted to the St. Albert Gazette explains how the family of a 13-year old foster child, who died shortly after leaving foster care, is seeking funding and payments for a lawyer to represent them in an inquiry into her death. The inquiry is meant to shed light on the girl’s death, with the aim of preventing further foster-care related injury or death.

Samantha Martin died in December 2006 after collapsing from an apparent heart attack. The inquiry is supposed to determine what caused the girl’s cardiac arrest.

Martin lived in foster care for most of her life; she was born with a rare chromosomal disorder and the government insisted the Martin family place her there to receive the necessary medical supports.

Read more here.