Canadian Paraplegic Association (Alberta)

For anyone interested, here is the URL to the Albertan Canadian Paraplegic Association’s online newsletter Wheel-E. You can subscribe to Wheel-E via email or phone (780-424-6312 for local calls or 1-888-654-5444 for toll free phone calls outside of Edmonton). If you have announcements you would like to post, you can submit them via the email address (the deadline for submission is the 26th of each month).

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

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

Nutritional Experiments on Aboriginal Peoples in the News

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

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

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

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

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

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

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

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

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

You can read the full articles through the links below:

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

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

Eugenic sterilization NOW

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

Female inmates sterilized in California prisons without approval

Published: July 7, 2013 Updated 8 hours ago

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

Tommy Douglas, young eugenicist

from The National Post, by Michael Shevell

This NP article is itself taken from a longer article in the January 2012 issue of the Canadian Journal of Neurological Sciences.

Though bespectacled and slight of build, Tommy Douglas is a giant of 20th Century Canadian history. His iconic, indeed mythic, status within the Canadian historical landscape is exemplified by his selection, in 2004, as “The Greatest Canadian” in a CBC-mandated competition above such luminaries as former Prime Ministers Pierre Elliot Trudeau and Lester Bowles Pearson, scientist Frederick Banting, and hockey great Wayne Gretzky. This honour reflects Douglas’ role as the “father” of Canadian Medicare, which has emerged, for better or worse, as a defining feature of a Canadian national identity.

Medicare has in effect emerged as a statement of national values. Values that include compassion, fairness, tolerance and equality; values that are not selectively applied, but are extended to embrace even the most vulnerable of Canadians.

Eugenics, by contrast, concerns itself at its most fundamental level with the selective breeding of humanity to improve the human species. At a practical level, eugenics in the 20th century involved the removal from the gene pool by various means those classes of individuals considered “inferior stock,” whose deficits had an inherited basis that was immutable for future generations. These classes included those suffering from mental illness, intellectual disability or what was characterized as social diseases (e.g, alcoholism, delinquency).

The broad principles of universal-access medicare contradict those that can be utilized to justify the practice of eugenics. It would be paradoxical for an individual to support both. Yet Tommy Douglas did so with moral persuasion. Careful analysis of this contradiction reveals with hindsight further paradoxes that merit consideration. … read more

Carl Elliott on Human Subjects and Big Pharma

from the NYT, July 28th, an Op-Ed piece by bioethicist Carl Elliott:

LAST month, the Archives of Internal Medicine published a scathing reassessment of a 12-year-old research study of Neurontin, a seizure drug made by Pfizer. The study, which had included more than 2,700 subjects and was carried out by Parke-Davis (now part of Pfizer), was notable for how poorly it was conducted. The investigators were inexperienced and untrained, and the design of the study was so flawed it generated few if any useful conclusions. Even more alarming, 11 patients in the study died and 73 more experienced “serious adverse events.” Yet there have been few headlines, no demands for sanctions or apologies, no national bioethics commissions pledging to investigate. Why not?

Here is the complete article.

Does anyone remember “lobotomy”?

Picture of brain surgery

The New York Times recent Surgery for Mental Ills Offers Both Hope and Risk raises, for me, one big question: why the enthusiasm for bringing experimental brain-fu*king to the public’s attention right now? As the article reports but does not underscore in the name of balance, the history of psychosurgery is one of moral and medical failure, though failures recognized only in retrospect. What could be so different now? That we’re not considering lobotomies (which sever the frontal lobes) but cingulotomies (which sever into the anterior cingulate) and capsulotomies (which sever the connections between the cortex and the medulla that make up the internal capsule)?

h/t to ARPH’s Psychosurgery promoted by the NYT: Here we go, again; for a more optimistic take on this, see also Mind Hack’s Psychosurgery : new cutting edge or short, sharp shock (the only comment up there gives some pause, however).

The Fragility of “Normal”

This week’s print edition of Maclean’s features an article by Mark Steyn blaming gay rights advocates for the “imminent threat” of legalized polygamy in Canada. Once you make one amendment to what is normal, Steyn claims, you won’t be able–or even justified–to prevent further changes.

The article is interesting for two reasons. First, naturally, there is no mention of what relevant differences there are between the two forms of marriage. Steyn ignores a vast body of literature on the subject, which is more than a slight oversight for a journalist. Second, Steyn’s underlying attitude appears to be that we should fear any departure from normal, where the definition of normal he uses is typified by the pretty, white suburbs of 60 years ago.

I recommend reading it, and perhaps writing a letter.

NYT on DSM-V

A few snippets from Benedict Carey’s recent New York Times article Psychiatrists Revise the Book of Human Troubles on the ongoing revisions to the Diagnostic and Statistical Manual of Mental Disorders, expected to be published in 2012:

Is compulsive shopping a mental problem? Do children who continually recoil from sights and sounds suffer from sensory problems — or just need extra attention? Should a fetish be considered a mental disorder, as many now are? Panels of psychiatrists are hashing out just such questions, and their answers — to be published in the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders — will have consequences for insurance reimbursement, research and individuals’ psychological identity for years to come. The process has become such a contentious social and scientific exercise that for the first time the book’s publisher, the American Psychiatric Association, has required its contributors to sign a nondisclosure agreement.

You can read the whole article right here.

something new from Singer

December 28, 2008
Harriet McBryde Johnson | b. 1957
Happy Nevertheless
By PETER SINGER
New York Times

I met Harriet McBryde Johnson in the spring of 2001, when I was giving a lecture at the College of Charleston. Her brand of Southern etiquette prescribed that if you’re not prepared to shoot on sight, you have to be prepared to shake hands, so when I held out mine, she reached up from her powered wheelchair and took it with the three working fingers on her right hand. She added that she was attending my lecture as a supporter of Not Dead Yet, the disability rights organization that a year and a half earlier blockaded Princeton University’s Nassau Hall in protest against my appointment as a professor of bioethics. I told her I looked forward to an interesting exchange.

My lecture, “Rethinking Life and Death,” was a defense of the position that had aroused such vehement opposition. I pointed out that physicians routinely withdraw life support from severely disabled newborns, and I argued that this is not very different from allowing parents to decide, in consultation with their doctors, to end the life of a baby when the child has disabilities so serious that the family believes this will be best for the child or for the family as a whole.

When I finished, Johnson, who was born with a muscle-wasting disease, spoke up. I was saying, she pointed out, that her parents should have been permitted to kill her shortly after her birth. But she was now a lawyer, enjoying her life as much as anyone. It is a mistake, she said, to believe that having a disability makes life less worth living.

Our exchange of views continued for a few minutes in the lecture theater, and by e-mail afterward. Years later, when I read her autobiographical book, “Too Late to Die Young,” I wasn’t surprised to see “arguing hard” listed among the pleasures of her life.

The following year, Continue reading

About Face(s): here’s an article from the L.A. Times about a face transplant

Woman undergoes face transplant in Cleveland

Surgeons at the Cleveland Clinic replace about 80% of her face with skin and muscles harvested from a cadaver. It’s the most extensive such operation ever performed and the first in the U.S.
By Karen Kaplan and Shari Roan
December 17, 2008
A woman being treated at the Cleveland Clinic has an almost entirely new face following the most extensive facial transplant ever performed, the medical center said Tuesday. The surgery was the first face transplant in the U.S. and the fourth in the world.

Few details about the patient have been released in advance of a news conference scheduled for today. About 80% of the patient’s face was replaced with skin and muscles harvested from a cadaver.

The family of the patient has asked that her name and age not be released so she can remain anonymous, the clinic said. It was not clear when the surgery took place.

Dr. Maria Siemionow, the Cleveland Clinic plastic surgeon who performed the marathon procedure, is well known among microsurgery specialists, and colleagues were quick to praise the achievement. They said face transplants would become routine in the coming years.

“We’re on the threshold of a whole new way of correcting defects,” said Dr. Warren C. Breidenbach of the University of Louisville, who performed the first hand transplant in the United States.

Read the entire article at the link below:
http://www.latimes.com/news/la-sci-facetransplant17-2008dec17,0,6148948.story?track=ntothtml

Caregivers or Keepers?

Many people with disabilities depend on caregivers in various essential areas of their lives. At their best caregiving relationships meet the needs of both the giver and receiver of care. The story of “Aunt Dot” in Rock Hill, South Carolina provides a powerful demonstration of the dedication of many caregivers. Her young niece, who had cerebral palsy and was cognitively impaired, had gone to live with Dot for awhile, so her niece could access a better school program. Decades later in 2008, her then 65-year-old niece was still living with  Aunt Dot, when an intruder broke into their home. Her niece was raped and killed, and 86-year-old Aunt Dot was beaten and stabbed and stabbed trying to defend her. Dot lived for another 6 months, and her only regret was that she couldn’t protect her niece. (see icad for more on this case).

Two stories in yesterday’s news illustrate the other extreme. A front-page investigative report in the Seattle Post-Intelligencer tells the story of a woman living in a Washington residential facility for people with developmental disabilities who was raped and impregnated by a nursing assistant.  WFFA.com in Dallas provides security video of a school bus driver choking a student with developmental disabilities. 

Such cases are not rare. Some caregivers are candidates for sainthood, some are genuine monsters. Both of the extremes perpetuate stereotypes. Most are probably pretty ordinary people. Our stereotypes of caregivers interact strongly with our stereotypes of people with disabilities, particularly of those who depend on caregivers. What is clear is that understanding the lives of people with disabilities requires understanding their relationships with other people in their lives, and for many people with disabilities, relationships with caregivers are an important part of their lives, for better or for worse.

Dan Savage on Assisted Suicide and Religion

Dan Savage, well-known for his column Savage Love, has written a moving essay, “In Defense of Dignity” on the very recent death of his mother in The Stranger. It is cast, in part, in terms of the upcoming referendum ballot in Washington state on assisted suicide, I-1000. Reading the article, together with the comments in toto is highly recommended, but here’s an excerpt:

People must accept death at “the hour chosen by God,” according to Pope Benedict XVI, leader of the Catholic Church, which is pouring money into the campaign against I-1000. The hour chosen by God? What does that even mean? Without the intervention of man—and medical science—my mother would have died years earlier. And at the end, even without assisted suicide as an option, my mother had to make her choices. Two hours with the mask off? Six with the mask on? Another two days hooked up to machines? Once things were hopeless, she chose the quickest, if not the easiest, exit. Mask off, two hours. That was my mother’s choice, not God’s. Did my mother commit suicide? I wonder what the pope might say. I know what my mother would say: The same church leaders who can’t manage to keep priests from raping children aren’t entitled to micromanage the final moments of our lives. Continue reading

UD, Gallaudet, and a new aesthetic (acknowledgements to H-Dirksen Bauman)

PLEASE NOTE: The link in this post has been corrected.

The principles of Universal Design (UD) emerged from the disabled people’s/disability rights movement at least as early as the late 1960s.  Initially, UD (or barrier-free design) was directed in large part to the development of architectural and infrastructural modifications such as curb-cuts which allow wheelchair users access to city streets, auditory beeping devices at traffic lights to inform blind pedestrians that lights have changed, and so on.  In order to counter facile cost-benefit analyses aimed at undermining such measures, disability activists and theorists have long argued that UD improves the lives of all sorts of people, not just disabled constituents: for instance, parents pushing strollers or pedestrians carrying groceries benefit from curb-cuts and ramps ostensibly designed for wheelchair users.  At one time directed toward reconfiguring the “built environment,” the principles of UD now underpin modifications in the design of ATMs, household appliances such as microwaves, computer software, and picture telephones so that universal access will one day be realized and not remain a mere slogan.

A “new aesthetic” of UD has been unfolding at Gallaudet University.  The refurbishing of Gallaudet is not only aimed at improving human interface with the physical, or “built” environment.  On the contrary, the new Gallaudet will be designed to accommodate a widening sense of deaf identity and the meaning of deafness.  An article which appeared on the front page of the Washington Post describes some of these changes.  Here is an excerpt:

 “Sidewalks wide enough to accommodate pedestrians using sign language. Rounded corners and strategically placed reflective glass so people who cannot hear can see who’s coming and who’s behind them. Glass elevators so passengers can communicate with outsiders in case of emergency.”  Read the full story here: http://www.washingtonpost.com/wp-dyn/content/article/2008/10/03/AR2008100303708.html

 

Violations of the Human Rights of People with Albinism

This post (acknowledgements to Sandy Sufian and Penny L. Richards) includes a letter from Rick Guidotti of Positive Exposure, the link to a petition Guidotti will take to Tanzania, as well as a link to the NY Times article (June 2008) on these unspeakable crimes. 

___________________________________________________________________

We write to advise you of disturbing human rights violations against people with albinism in Tanzania that call out for action by the genetic community and ask for a few minutes of your time to make a difference.  Recent reports from Tanzania published by BBC News, New York Times and the Washington Post tell of the murders of persons with albinism, including children, on the orders of witchdoctors peddling the belief that potions made from the legs, hair, hands, and blood of people with albinism can make a person rich.

In mid-October, Positive Exposure’s Rick Guidotti (www.positiveexposure.org) will be traveling to Tanzania in partnership with Under the Same Sun (www.underthesamesun.com) to  collaborate with national and local government officials, authorities and interests groups to develop effective strategies to end these 
crimes against humanity.  Please sign the online petition which the team will present to the government of Tanzania. We need 10,000 signatures for this to be effective.  http://listserv.galists.org/t/345183/10873/81/0/?u=aHR0cDovL3d3dy51bmRlcnRoZXNhbWVzdW4uY29tL3BldGl0aW9ucy5waHA%3d&x=dde07514

This petition will also let the albinism community in Tanzania know that they are NOT ALONE and that many throughout the world are standing with them in defense of their fundamental human right to safety, security and freedom.

Positive Exposure is a non-profit organization that challenges stigma associated with difference by celebrating the richness and beauty of human diversity. 

Here is the link to the NY Times article: http://www.nytimes.com/2008/06/08/world/africa/08albino.html

“Let’s Talk About It”: Contemporary Eugenics for Louisiana and the Problem of Intergenerational Welfare

Famous picture of The Kallikaks

Famous picture of The Kallikaks

Republican state representative  John Labruzzo has recently suggested a sterilization program in Louisiana to solve the problem of “intergenerational welfare”. Labruzzo’s proposal derived from a “brain-storming session” (which makes me kinda wonder what sort of brains were involved). Labruzzo represents himself as prepared to go–on the bold ideas for the 21st-century front–where no man has gone. Readers of this blog, however, will know that the idea is all too familiar in the history of eugenics. The core proposal was to pay (say) women who are deemed to be in a situation of “intergenerational welfare” $1000 to undergo tubal ligation.

I don’t know whether Labruzzo has also had the bold idea of making this compulsory, or working actively in ways to make the economic plight of such women even worse than it is now so that they would be more likely to accept such a “voluntary” program of sterilization. Both might be ideas that Representative Labruzzo’s brain-storming team missed, but both would be natural extensions of the eugenics program he is just kinda throwing out there for people to consider. The proposal derived, it seems, in part from Labruzzo’s reflections on the aftermath of Hurricane Katrina, and the more recent hurricane activity in the Gulf of Mexico.

I wish I were making this up (as can sometimes happen …). But I’m not.

What do New Orleans, or Louisianers, or Americans more generally, think of this, one wonders? Some vids and other links on this beneath the fold, where you can see Labruzzo in action defending the idea and a few ways in which it has been picked up in the media already. Continue reading

NY Times article: US Congress Passes Bill With Protections for Disabled Americans

Published: September 17, 2008

WASHINGTON — Congress gave final approval on Wednesday to a major civil rights bill, expanding protections for people with disabilities and overturning several recent Supreme Court decisions.  The voice vote in the House, following Senate passage by unanimous consent last week, clears the bill for President Bush.  The White House said Mr. Bush would sign the bill, just as his father signed the original Americans With Disabilities Act in 1990.  The bill expands the definition of disability and makes it easier for workers to prove discrimination. It explicitly rejects the strict standards used by the Supreme Court to determine who is disabled. 

Read the full story here:  http://www.nytimes.com/2008/09/18/washington/18rights.html?th&emc=th

Canadians sweep podium in Paralympic pool

TheStar.com/Toronto Star

September 7, 2008

THE CANADIAN PRESS

BEIJING – Valerie Grand’Maison got Canada off to a flying start at the Paralympics, leading a podium sweep in the 100-metre butterfly for the visually impaired on the opening day of competition.

Cyclist Jean Quevillon captured Canada’s first medal of the Games earlier in the day, a bronze in the men’s individual pursuit for cerebral palsy athletes.

Grand’Maison, from Longueuil, Que., Kirby Cote of Winnipeg and Chelsea Gotell of Antigonish, N.S., finished 1-2-3 in the butterfly. The 19-year-old Grand’Maison clocked a Canadian record one minute 6.49 seconds in her Games debut, less than a second off the 12-year-old world record.

“I’m so happy, I’m speechless right now,” said Grand’Maison, who won five gold medals at the 2006 world championships. “It’s a dream come true. Every single morning I have thought about winning Paralympic gold and it has now finally happened.   “And it was extra special to share the podium with my teammates. It’s a proud moment for us.”

Continue reading

Gay Diver Makes a Splash

Cover picture from the gay magazine The Advocate of Matthew Mitcham

Cover picture from the gay magazine The Advocate of Matthew Mitcham

Ok, ok, ok, so I *haven’t* actually seen this headline in a tabloid of late, but given all the kerfuffle that my compatriot Matthew Mitcham’s gold medal in the 10 metre diving event has caused, I might well have. There’s a few stories to watch and sort through (and don’t give up until you’ve taken The Quiz, a special feature of today’s post, below the fold.)

Basic story 1: Australian Matthew Mitcham clinched the gold medal in the 10 metre dive with his final dive of the day, knocking off Chinese favourite Zhou Luxin by just under 5 points overall. Mitcham was the only non-Chinese athlete to score a gold in the diving, and also received the hightest score EVER for a diver in this event. Yay Matt!

Basic story 2: Matthew Mitcham, who won a gold medal in something watery, was the only openly gay male athlete at the Beijing Olympics. Of the roughly 11 000 athletes competing, 10 openly lesbian women have been identified (by strategically placed spies?). If at least half the athletes competing were men, that makes calculating the percentage of openly gay male athletes something that even I can calculate: 1 in 5500. (Women: 1 in 550). Let’s stick our necks out, and hazard a guess: that’s significantly lower than the base rate of openly gay people in the rest of society. Every society. Yay … society?

Basic story 3: NBC and other major US networks ignored Basic Story 2 in covering Basic Story 1. Sports and sexual orientation are just separate things, and they were just interested in covering sports. Yay, self-deception!

Basic Story 4: Basic Story 2 is of much more interest to many people than Basic Story 1. As is the ambivalence that Basic Story 2 creates in many people who share that interest. (And as conveyed by my sorry attempt at a punchline in Basic Story 2.) Three cheers for Matthew on all fronts, but really, which century are we living in? In addition, people who get worked up about Basic Story 3 should really get Out more. Continue reading