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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Reproductive Autonomy: Control of Sexuality A Panel Discussion at Pride Week, University of Alberta

Wednesday March 20, 2013 at 3:00 pm – 4:00 pm in Education South Building at the University of Alberta the Living Archives on Eugenics is sponsoring a panel discussion featuring Professor Lise Gotell, Chair of Women’s and Gender Studies and Dr. Lane Mandlis, with Moyra Lang, and Professor Rob Wilson. ASL interpreting services will be offered at this event. Find us on Facebook http://www.facebook.com/#!/events/270019033131796/?fref=ts

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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.

What sorts of academics should there be?

from Carl Elliott, “How to be an academic failure: an introduction for beginners”, The Ruminator Review, but also:  whitecoatblackhat.com/academicfailure/

Carl visited us up in Edmonton a few years ago, courtesy in part due to the work he was doing at the time on big pharma and also as a member of the What Sorts Network.  In addition to enjoying and learning much from his public lecture, we also had a great informal, roundtable session with about a dozen people that was focused on his then-developing work on a particular case in psychopathology that involved a senior professor who had murdered his spouse.

I also had a fun dinner with Carl in which he confessed his slight ill-ease with me.  This was caused by the fact that every time I started speaking, I managed to disappoint his expectation that I would sound just like The Dude.  “Damn it, how can that be?” he wondered aloud, almost with sufficient pathos for me to consider peppering our conversation with some of the many lines I know from heart from The Big Lebowski.  But despite the short-term fun this would have involved, I thought that this might actually exacerbate the problem in the long run, so I resisted the temptation.  “But that’s just like, your opinion, man.” I still hear a small voice inside my head say.

Here’s how his recent article, with all its sage advice on academic failure, begins:

How to be an academic failure? Let me count the ways. You can become a disgruntled graduate student. You can become a burned-out administrator, perhaps an associate dean. You can become an aging, solitary hermit, isolated in your own department, or you can become a media pundit, sought out by reporters but laughed at by your peers. You can exploit your graduate students and make them hate you; you can alienate your colleagues and have them whisper about you behind your back; you can pick fights with university officials and blow your chances at promotion. You can become an idealistic failure at age 25, a cynical failure at 45, or an eccentric failure at 65. If failure is what you’re looking for, then you can hardly do better than the academic life. The opportunities are practically limitless.

Call me arrogant, but I like to think I have a knack for failure. Having started and abandoned one abortive career, participated in the dissolution of a major bioethics center, published dozens of articles nobody has read and given public lectures so dull that audience members were actually snoring, I think I have earned my stripes. It is true that I am not an alcoholic yet. I do not have a substance abuse problem, and no university disciplinary proceedings have been brought against me so far. I am still a novice at failure. Many other people in my own field have succeeded at failing in a far more spectacular fashion than I have, some of whom are rumored to be living in South America. But I am learning. And I think I have something to contribute.  Read more

CCD Calls on Global to Stage Follow-up Episode

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

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

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

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

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

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

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?

A reply to Allen Buchanan on Cognitive Enhancement

The interview with Allen Buchanan has spawned numerous discussions throughout the web, including Brendan Foht’s response. In it, Foht looks to address Buchanan’s claim that the nature of our evolution in some sense justifies cognitive enhancement, and the existence of other technologies.

It is strange that Buchanan thinks that opponents of genetic engineering who find something worth preserving in our nature must believe that evolution is analogous to some sort of “master engineer.” Considering that evolution is a slow process by which biological order spontaneously emerges from highly complex networks of highly conserved genes, there would seem to be an obvious analogy for it in the conservative view of society.

Another article on the topic by Allen Buchanan can be found here. And you can watch a lecture by Buchanan through Youtube, titled “Using Biotechnology to enhance normal humans: Why nature isn’t good enough.” 

“Finding Purpose After Living With Delusion”

An article from the New York Times tells the story of Milt Greek, who experiences psychotic delusions to save the world.

So after cleaning the yard around his house — a big job, a gift to his wife — in the coming days he sat down and wrote a letter to the editor of the local newspaper, supporting a noise-pollution ordinance.

Small things, maybe, but Mr. Greek has learned to live with his diagnosis in part by understanding and acting on its underlying messages, and along the way has built something exceptional: a full life, complete with a family and a career.

Greek, and a growing number of others, have looked to their delusions as being rooted in fears, and other psychological wounds, with the goal of recovery through understanding. It’s a process that Continue reading

“I Had Asperger Syndrome. Briefly.”

An interesting Op-ed from the New York Times titled “I had Asperger Syndrome. Briefly” explores the process, and history, of asperger syndrome. Benjamin Nugent writes,

The general idea with a psychological diagnosis is that it applies when the tendencies involved inhibit a person’s ability to experience a happy, normal life. And in my case, the tendencies seemed to do just that. My high school G.P.A. would have been higher if I had been less intensely focused on books and music. If I had been well-rounded enough to attain basic competence at a few sports, I wouldn’t have provoked rage and contempt in other kids during gym and recess.

Student Summer Work Opportunities

Student Summer Work Opportunities:

Flexible Hours (30-40 hours per week)
Wages range between $9.00-11.00 per hour
Possibility of holding a second job due to hour flexibility
Students can work from anywhere in Canada as work will be done by telecommuting

Job Description(s):
Editing and internet support
Potential composition of published articles and/or books (with possibility of co-authorship)
Typing and editing large manuscripts
Help for graphic design for covers
Also looking to fill one internet position

Applicants must be full time students.

Please contact Dr. Austin Mardon at aamardon@yahoo.ca

Canada as a model for sterilization compensation

Douglas Wahlsten has emailed to inform us of a publication in the Winston-Salem Journal on the story of Leilani Muir: the court battle (and victory) over wrongful sterilization, compensation, and the numerous cases that followed. Wahlsten explores these as a potential model to be used in cases of sterilization compensation in the United States, while also noting the recent promotion of the Canadian Eugenics’ past with the CURA funded Living Archives Project and the NFB documentary on the Leilani Muir case.

The award for sterilization followed existing rules in Alberta about an upper limit of damages for loss of the ability to have children from injury. Other jurisdictions may have another limit or even no limit at all. Consider the recent case of Evans vs Lorillard, where a man was awarded $152 million because the tobacco giant gave cigarettes to his mother when she was a child, and she became addicted and eventually died of lung cancer.

What would be the award if a woman lost her ability to have children because of a mistake during surgery or an auto accident? It seems this would be a reasonable standard for an award to victims of eugenic sterilization. To give them less implies they do not deserve the same respect as other people. Surely the amount should exceed the $20,000 proposed for victims of eugenics in North Carolina, because having children is a precious thing.

You can find the article here. 

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.

Wallace Kuralt’s era of sterilization

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

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

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

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

You can read the rest of the article here.

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.

Here We Go Again: Canada Bars Family of Autistic Teen

Recently, we told you about an immigration restriction case involving a family living in Montreal. We then told you about the resolution of that case.

As evidence that the recent case was not an isolated incident, this Ottawa Citizen article describes a similar case.

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Abuse Claimed by Ex-Students of The W. Ross MacDonald School for the Blind

In yet another example of alleged abuse of vulnerable populations in residential schools, this Chronicle-Journal article describes a class-action law suit filed against the Ontario government on the grounds of negligence and breaches of fiduciary duties by the school staff.

Robert Seed, 64, is the representative plaintiff in the class-action lawsuit, which claims the staff at the W. Ross MacDonald School for the Blind, in Brantford, Ont., bullied, humiliated and abused — mentally and physically — the plaintiffs in the 1950s and 1960s. The lawsuit is still in its early stages. The claim was filed at Superior Court in Toronto last month.

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Facing Uncertainty: Who is Destined for Alzheimer’s Disease?

A talk by Margaret Lock, McGill University with Respondent: Alex Choby, University of Alberta. Thursday 24 March 2011 at 3.30pm at ETLC E1 003 (right behind Assiniboia Hall on the University of Alberta campus far North West end. Nearest parking is Windsor parkade) with a reception to follow. A SSHRC Gold Medal Winner Margaret Lock is a Professor Emeritus in Social Studies in Medicine, and is affliated with the Department of Social Studies of Medicine and the Department of Athropology at McGill University. The abstract of the talk: Continue reading