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.

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Why The Michener Centre Must Close

Recently, the Alberta government announced the future closure of the Michener Centre, an institution that houses people with developmental disabilities in Red Deer, Alberta. The centre is home to some 125 Albertans with developmental disabilities and has been in operation since the 1950′s.

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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:

Meet the New Eugenics, Same as the Old Eugenics

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

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

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

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Contemporary practices of sterilization in Australia

As a follow up to the post in the first link below, here is a list of further related links on those wanting to know more.  Thanks to a helpful anonymous reader of the What Sorts blog who provided most of the links below but who doesn’t wish to be identified.  Folks in Oz: let us know if you have more information, are undertaking action, whatever.

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

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

The DSM Drama (“Part V”)

Dr. Stefan P. Kruszewski, in an opinion piece written for ABC News entitled “Doctors’ Conflicting Interests Can Cost Money and Lives, and Hinder Medical Discoveries,” warns against the danger of medical practitioners recommending specific drugs as part of treatment while being paid to speak, advocate, and do research for the companies that manufacture them.

After writing a letter expressing concerns about such practices to the Journal of American Medical Association, the associate editor responded (via e-mail) by shrugging such concerns off as trivial.

During the review process, an associate editor at the journal asked the question (and inadvertently copied me on an email that had been sent to another associate editor), “What’s the big deal? What’s all this [expletive deleted] about conflicts of interest?” (see link)

Kruszewski, however, thinks such practices are actually very dangerous.  He writes:

But I do worry, because drug promotion and clinical decision-making that are brokered on the backs of dollar bills have a greater chance of causing serious adverse outcomes, including illnesses and death. If a physician embellishes the effectiveness of a drug or minimizes its risk, that directly hurts you and me.  Physicians who are heavily supported by pharmaceutical companies and medical device makers are not forming independent, unbiased decisions. Instead, their brains have been lined with gifts, perks and money, which influences their rose-colored opinions. (see link)

The conflict of interest does not stop at Dr. Kruszewski’s worries and the problem he points to can unfortunately be traced to the DSM (The Diagnostic and Statistical Manual), which is an authoritative taxonomy of mental disorders.  Worries of financial conflicts plagued the fourth installment of the DSM (the DSM IV) and with the DSM V on the horizon, similar criticisms are voiced.

The manual, published by the American Psychiatric Association, details the diagnostic criteria for each and every psychiatric disorder, many of which have pharmacological treatments. After the 1994 release of DSM-4, the APA instituted a policy requiring expert advisors to disclose drug industry ties. But the move toward transparency did little to cut down on conflicts, with nearly 70 percent of DSM-5 task force members reporting financial relationships with pharmaceutical companies — up from 57 percent for DSM-4. (see link)

The greatest risk of conflict of interest remains with the taxonomizing and eventual diagnosing of disorders that are intimately linked with the manufacturing of drugs intended to treat these disorders.  Katie Moisse writes:

Some of most conflicted panels are those for which drugs represent the first line of treatment, with two-thirds of the mood disorders panel, 83 percent of the psychotic disorders panel and 100 percent of the sleep disorders panel disclosing “ties to the pharmaceutical companies that manufacture the medications used to treat these disorders or to companies that service the pharmaceutical industry,” according to the study. (see link)

This is not to suggest, of course, that medical professionals have malicious intent or that they are only interested in the health of their own bank accounts.  However, there remains a serious worry about the taxonomy itself as well as about future diagnoses and treatment.  To add to the turbulent atmosphere surrounding the DSM V, the introduction of certain new diagnoses has also been criticized.

The DSM-5 has also drawn criticism for introducing new diagnoses that some experts argue lack scientific evidence. Dr. Allen Frances, who chaired the revisions committee for DSM-4, said the new additions would “radically and recklessly” expand the boundaries of psychiatry.  “They’re at the boundary of normality,” said Frances, who is professor emeritus of psychiatry at Duke University. “And these days, most diagnostic decisions are not made by psychiatrists trained to distinguish between the two. Most are made by primary care doctors who see a patient for about seven minutes and write a prescription.” (see link)

I think we have a serious problem on our hands if drug companies get to determine the taxonomy of mental disorders and medical doctors diagnose and prescribe drugs in accordance with the financial interests of these drug manufacturers.  Even if things are not as bad as they sound, they seem to be getting worse (“with nearly 70 percent of DSM-5 task force members reporting financial relationships with pharmaceutical companies — up from 57 percent for DSM-4”).  Should we start going to the accountants of pharmaceutical companies for advice?  Now that would be absurd, but if pharmaceutical companies have as much sway over what is defined as a mental disorder and what treatment is pursued as Moisse suggests, then perhaps we might as well just bypass the middleman (the local mental health professional) and go directly to the source!  Why are individuals who are directly funded by drug manufacturers allowed to make executive decisions on the DSM V?  James Scully, APA director, sees no other way.

APA medical director and CEO Dr. James Scully insisted the DSM-5 development process “is the most open and transparent of any previous edition of the DSM.”  “We wanted to include a wide variety of scientists and researchers with a range of expertise and viewpoints in the DSM-5 process. Excluding everyone with direct or indirect funding from the industry would unreasonably limit the participation of leading mental health experts in the DSM-5 development process,” he said in a statement. (see link)

Lisa Cosgrove, associate professor of clinical psychology at the University of Massachusetts-Boston is of a different opinion:

Cosgrove said she believes there are plenty mental health professionals with no financial ties to drug companies. If necessary, experts with conflicts could still participate in the process as non-voting advisors, she said.  “My best hope would be for the APA to respond in a substantive way to the concerns we’ve raised,” she said. “They have an opportunity here to make a correction that would give the appearance, if not the reality of developing a diagnostic instrument that’s objective and has integrity.” (see link)

I hardly think that the mental health professionals with no financial ties to drug companies live at or just above the poverty line, so why, unless a researcher is explicitly doing research for a certain pharmaceutical company, does the profession open itself to such criticisms by allowing the kinds of practices Kruszewski and Cosgrove object to?

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.

Tuberculosis Outbreak Hits Nunavut

Six decades ago, a malady known as consumption stormed across the Arctic, snuffing hundreds of lives, tearing apart thousands of families, and seeding a deep distrust in a bungling public health-care system.

Now, the pernicious disease written so indelibly upon Inuit history and psychology is making an unwelcome return to the North. This week, Nunavut recorded its 98th case of tuberculosis in 2010, the most logged in the territory’s 11-year history. Continue reading

Euthanasia Hearings Begin in Quebec

Euthanasia, always a controversial topic, is about to get alot of media attention again…

From CTV.ca

As public hearings on the controversial topic of dying with dignity get underway in Quebec, the chair of the committee expects debate to become emotional.

Quebec Liberal MNA Geoff Kelley says it’s been 17 years since B.C.’s Sue Rodriguez brought the issues of mercy killing to the fore, when she fought all the way to the Supreme Court for the right to kill herself. And though the court eventually ruled against her, the debate has never gone away, he says. Continue reading

Revolutionary Voices – a resource by & for queer and questioning youth of every color, class, religion, gender and ability

http://www.schoollibraryjournal.com/slj/newsletters/newsletterbucketextrahelping/886066-443/nj_library_citing_child_pornography.html.csp

Access to information and information ethics need have revolutionary voices and here is an excellent reason why!

Mourning Dove at the Catalyst

MOURNING DOVE

Catalyst Theatre is pleased to be the venue for Kill Your Television’s presentation of Mourning Dove

by Emil Sher, running from May 13 to the 22.

Could there ever be a justification for taking a child’s life?  Edmonton’s critically acclaimed, multi-Sterling Award winning independent theatre collective, Kill Your Television will present the Western Canadian premiere of Mourning Dove by Emil Sher. Based on an award-winning radio play and inspired by ‘the Robert Latimer case’ – a true Canadian story – Mourning Dove explores the unspeakable dilemma faced by Doug and Sandra Ramsay, parents of a severely disabled girl who lives a life of pain and agony. Doug is not convinced her next operation, described as a “salvage procedure”, will make a difference, but Sandra, believes it’s their only choice. When Doug takes matters – and his daughters life – into his own hands, worlds are shattered and no one is prepared for the fallout. Mourning Dove asks difficult questions about mercy killing, familial loyalty and personal ethics versus public morality. Controversial and challenging, Mourning Dove is presented by Kill Your Television. Winner of the Sterling Award for Outstanding Independent Theatre 2001, 2002, 2003, 2006.
Featuring: Michael Peng, Nadien Chu, Nathan Cuckow, and Naomi Gaertner
Production Designer: Kerem Cetinel
Stage manager: Jenn Best
Director: Kevin Sutley
Tues-Saturday, 8pm  Sunday matinee at 2pm
Tickets $25, Student/Senior $17
2 Tickets for $20 (Tuesday May 18th)
Tickets available at Tix on the Square (780-420-1750)

Ventilator rationing guideline

A guideline is being prepared by US health care officials to decide whose ventilators will be disconnected in case of swine flu pandemic. It is based on what is called the New York protocol, which “calls for hospitals to withhold ventilators from patients with serious chronic conditions such as kidney failure, cancers that have spread and have a poor prognosis, or ‘severe, irreversible neurological’ conditions that are likely to be deadly.”

Dr. Carl Schultz at the University of California at Irvine says, “The problem with lowering the standard of care is where do you stop? How low do you go? If you don’t want to put any more resources in disaster response, you keep lowering the standard.”

Read the ProPublica story below for details.

http://www.propublica.org/article/flu-nightmare-officials-ponder-disconnecting-ventilators-from-some-pat-923

Human Kinds–The Categories of Sexual Orientation in Law, Science, and Society–Part 1

The first part of Ed Stein’s talk at the Human Kinds symposium on sexual orientation, especially in equal protection under US jurisprudence.

Did Governor Richardson get it roughly right about sexual orientation, as Ed claims?

Human Kinds–The Categories of Sexual Orientation in Law, Science, and Society–Part 2

Ed Stein’s talk at the Human Kinds symposium, Part the Second. Here Ed focuses on the appeal to immutability in equal protection analysis in American law concerning sexual orientation.

WAS Socrates a hippie? I always thought so …

Human Kinds–Species Typical, Sub-typical, Beyond Typical–Q@A

A couple of questions from our panel for Gregor Wolbring–one from Ed Stein on human rights, and one from Natasha Vita-More on environmentalism and uploading.

If the discussion interests you, drop back and hear Gregor’s talk in Parts 1 and 2, or drop us a line or a comment.

Institutional Dehumanization

Sometimes, in our current discussions of human variation in the age of genetic manipulation, it is easy to forget the central role of the environment  in shaping human behaviour. This video from United Nations Television provides a powerful example of institutional dehumanization and of the power of families and communities to overcome dehumanization.

A transcript follows the cut.

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