Interesting article on the construction of disability in China by Yee-Fui Ng (Sessional Lecturer and PhD Candidate, Monash University Law School). The abstract: This article explores the tension between the Chinese government’s strong engagement in disability rights and simultaneous focus on ‘quality births’, which results in the abortion of disabled foetuses. At a broader level, the author examines the politicised and cultural construction of disability in China by scrutinising how the ‘disabled’ are defined, administered, policed and governed in postsocialist China.
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.
The Right to Not to Work: Power and Disability by Sunny Taylor
“The disabled are viewed with sympathy as victims of “bad luck” who will simply have to accept disadvantage as their lot in life, not as an identity group that is systematically discriminated against. Unlike sexism and racism, which are perceived to be significant social problems, disability falls under the social radar and disablism is not recognized as a damaging or even particularly serious form of prejudice.” The public remains unconvinced that the struggle for disability rights is actually their sturrgle as well….
The entire article and self-portrait can be found here: http://monthlyreview.org/2004/03/01/the-right-not-to-work-power-and-disability
Canadians with disabilities are about one and a half times as likely to be victims of violence as other Canadians. People with disabilities in Canada have civil rights on paper but not in practice. Canadian citizens, everyday, have their civil rights ruthlessly violated by their government. This has to be stopped, because Hope is Not a Plan!
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.
Just a quick reminder:
Professor Rob Sparrow will be giving two talks in Edmonton at the University of Alberta on Monday April 8 and Tuesday April 9, 2013. Both talks are open to the public and free! Talks are being held on campus in ETLC (Engineering Teaching & Learning Complex) Continue reading
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:
“Disabled people should not have babies.” Continue reading
In San Francisco, a group of Facing History and Ourselves students is spearheading a movement that could change public high school history classes for generations of future California teens. Their goal: to include California’s history with eugenics and sterilization in the state’s public high school curricula. To read more, see the original post.
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.
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
Some of you may be aware of the matter of “Baby M”, involving a 2-year-old child who was admitted to the Stollery Children’s Hospital in Edmonton, Alberta, on May 25, 2012. She required a ventilator for life support. Despite the parents’ opposition to the withdrawal of life-sustaining treatment, which incorporated their religious beliefs, the Court of Queen’s Bench found that it was in the child’s best interests to terminate life support and, on September 14, 2012, ordered the withdrawal of the ventilator. The Court held that there is a general notion in society that a life dependent upon machines and without awareness is not in the best interests of any patient. On September 19, 2012, a three member panel of the Court of Appeal held that there was no error in principle in the Queen’s Bench decision and the appeal was dismissed. On September 20, 2012, the Supreme Court of Canada dismissed the parents’ application for a further stay. “Baby M’s” ventilator was removed, she suffocated, and died.
The parents are appealing to the Supreme Court of Canada to have Canada’s highest court decide important issues regarding termination of life-sustaining medical treatment. This decision of the lower courts and, if leave is granted, the ultimate decision of the Supreme Court of Canada will decide the process that will be used and who will make decisions to terminate life support.
These decisions of the Alberta Courts and how they will be followed in the future may ultimately affect individuals in your organization or your community. Should you believe that you, your organization, or community have a position on these life and death issues that should be heard and considered Continue reading
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.
- http://whatsortsofpeople.wordpress.com/2012/11/01/forced-sterilization-and-disability-in-australia/ Recent What sorts blog post on forced sterilization in Australia TODAY:
- 1997 & 2001: reports from the Human Rights Commission in Australia that discuss the practice.
- 1998– official document assessing situation, number of sterilizations per year, convenience of sterilizing disabled woman http://www.familycourt.gov.au/wps/wcm/resources/file/ebb8810487b4021/MURRAY.pdf
- 2001- Study and report from Women With Disabilities Australia. Thorough, including much relevant history, sterilization survivor testimony and narratives, as well as a talk given by Adrienne Asch, and references to the significance of the Canadian eugenic history here, and reports “The Sterilization of Leilani Muir” as one of two video source. http://www.ag.gov.au/Documents/HRPB%20-%20NHRAP%20-%20Baseline%20Study%20-%20Submission%20-%20Women%20with%20Disabilities%20Australia%20-%20Attachment%205.PDF
- Leilani Muir on The Current, with Anna Maria Tremonti Continue reading
A Senate committee was recently established in Australia to review existing law and social policy concerning the sterilization of people with disabilities.
It seems that the inquiry is a response to public response (surprise? outrage?) to finding out that this practice continues in Australia under state and territorial legislation, and beyond it.
I suspect that the commission will find that Continue reading
Eugenic Sterilization laws were in effect in North Carolina between 1929 and 1974 – dates very close to the existence of such laws in Alberta, Canada (from 1928 to 1972), which resulted in nearly 8,000 sterilizations. These focused originally on those who were mentally ill or mentally retarded, and living in institutions. However, this grew to include criminals, the blind, the deaf, the disabled, alcoholics, those suffering from epilepsy, and those who were poor.
The debate for compensating these victimes have been ongoing for some time in the Carolinas, eventually culminating in the creation of a bill that went to the General Assembly, suggesting that each victim be paid $50,000 by the government. In Alberta, a number of cases against the government have been successful in gaining compensation for wrongful sterilization, including the well-known case of Leilani Muir. However, the General Assembly voted this past week against these measures.
The General Assembly cites the tough economic time, and the difficulty they have in justifying spending $10 million when the money is not in the budget. They further justify their decision, saying that history cannot be changed, and that are indeed many suppressed groups over history, including slaves and Aboriginals, who have suffered. These statements have generated even more debate. For more articles and reactions, see links below.
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
from Bangor Daily News Maine, April 9th, 2012:
Christina Mailhot got teased a lot as a child.
Born with Down syndrome, words like “retard” were flung at her every day, meant to be insulting. So when Mailhot, now 33 and a member of the Augusta-based self-advocacy group Speaking Up For Us, heard state officials using “mentally retarded” in relation to people with disabilities, she cringed.
“It’s legal talk; they’re legal words saying we are stupid,” she said. “I’m not that stupid, you know.”
Soon, such words will be wiped from Maine law and removed from the names of some Department of Health and Human Services programs. They will be replaced with phrases like “intellectual disability” and “person with a disability.”
Read the whole article here
Offensive words and phrases and their recommended replacements:
- Afflicted (eliminate or use “affected”)
- Crippled children (children with disabilities)
- Deranged (persons who have mental health diagnoses)
- Drunkard (person with alcoholism)
- Handicapped (eliminate as a noun, as in “the handicapped.” Replace with “disabilities” when paired with a person, as in “child with disabilities”)
- Lunatic (person declared legally incompetent)
- Mental deficiency (cognitive disability)
- Mental retardation (developmental disability)
- Mentally defective (has a cognitive disability)
- Senile (eliminate or use “people with dementia” or “people who have dementia”)
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
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?
Argentina’s strict anti-abortion laws got a minor make-over recently, as the Supreme Court of Argentina has ruled that rape victims will not be persecuted for having abortions. The supreme court unanimously backed the decision of allowing a 15-year-old girl, who endured years of sexual abuse by her stepfather, to terminate her pregnancy. “However, the judges said that their decision was not part of a discussion about the legalisation of abortion in Argentina, but just a clarification of existing laws” (see article).
The controversy was centred around Section 2, Article 86 of the Argentine penal code, which states that “abortion is not a punishable act ‘if the pregnancy stems from a rape or an attack on the modesty of a woman of feeble mind’” (see article). The horrible suffering of the poor 15-year old aside, it is interesting to note that the Argentinian law’s phrasing includes “feeble mindedness” in its allowances for legal abortions. Curiously (and I think quite tellingly), the point of debate in interpreting the law had to do with whether or not all rape victims or just those who are deemed “feeble minded” should be allowed to terminate their pregnancies.
Now, putting the phrase “feeble minded” in the sentence cannot have anything to do with informed consent (and the fact that some individuals might be deemed incapable of giving it) since the law pertains to rape cases, which, by their very definition, are instances where neither informed nor any other kind of consent can or ever is given. What might be the reason the phrase “feeble minded” made its way into the sentence and why might it be unclear to those interpreting the law whether or not it covered all or just “feeble minded” rape victims? If I were to venture a guess, I would say that eugenic reasoning is likely responsible for the legal phrasing the judges had such difficulty interpreting.
15 March 2011 Tonight from 8 to Midnight Eastern Time Global News is hosting a live blog on whether it is a good idea for parents to be permitted to kill their children who have severe disabilities. The three-person panel that they have assembled for this are all advocates for euthanasia of people with severe disabilities, including convicted murderer Robert Latimer. Please consider taking part in this, and if you think killing people with disabilities is a bad idea, please say so. Also please let others who care about this issue know about this. Global’s information about this “Taking Mercy” event can be found here. This debate directly will address the question of “What Sorts of People Should there Be?”