Out from Under: Now a New Home

Great news that the awesome exhibit, Out From Under, will now be a permanent feature of the New Canadian Museum for Human Rights.  I visited the exhibit with the curators in 2008 at the ROM in Toronto, and it was a great experience.  Congratulations, Catherine, Melanie, and Kathryn.

Eva Feder Kittay: 2014 Guggenheim Fellow

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

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

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

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

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

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

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.

Continue reading