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.
Category Archives: Human nature
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.
Disability is a political issue not a personal one –
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
Special Issue of the International Journal of Disability, Community & Rehabilitation (IJDCR) with the theme What Sorts of People Should There Be?
Special Issue of the International Journal of Disability, Community & Rehabilitation (IJDCR) with the theme What Sorts of People Should There Be?
Edited by Gregor Wolbring, Associate Professor Community, Rehabilitation and Disability Studies, Department of Community Health Sciences, Faculty of Medicine, University of Calgary, Canada is now available.
Parents try to force surrogate mother to abort their disabled baby
Blogger Cassy Fiano writes about parents who try to force their surrogate to abort their disabled baby. Cassy is has two sons, one has Down Syndrome.
Crystal Kelley wanted to give the gift of a baby to a family who couldn’t have children. She also needed the money that surrogacy brings. And so, she ended up becoming a surrogate mother to a couple in her state of Connecticut who had three children but wanted more. The first half of the pregnancy was friendly and happy, with Kelley and the parents communicating regularly.
Then there was an irregular ultrasound. After several more ultrasounds, the picture was clear: this was a baby who would be born with some disabilities. She had a cleft lip and palate, a cyst on her brain, and a heart defect. The baby’s parents immediately began to pressure Kelley to have an abortion, claiming it was the more “humane” option. Now, most decent people wouldn’t consider it humane to rob a child of her life simply because she might have a disability. This was the way that Kelley felt, and she refused to have an abortion
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:
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“Disabled people should not have babies.” Continue reading
Pride Week Panel on Reproductive Autonomy: Control of Sexuality
Here’s the poster for the upcoming panel, Reproductive Autonomy: Control of Sexuality that we’re hosting this Wednesday as part of the U of Alberta’s Pride Week. The sesssion will feature Lise Gotell and Lane Mandlis as speakers, with Moyra Lang and Rob Wilson performing an interpretative dance (ok, perhaps not, … but we’ll do something useful … or at least will be there). Please print and post, or distribute electronically. Text only version included as well.
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.
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
“Baby M”, End of Life Policy, and the Stollery Children’s Hospital
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
Forced sterilization and disability in Australia
From a “better babies” competition, 1913
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
Genetic counseling for the politically committed
h/t Anne Pasek
Shades of Personhood: A Worry About Definitions of Death for Transplant Purposes
Although brain death, which is an “irreversible cessation of all the functions of the brain, including the brain stem” (see article), has been used as a pretty safe definition of a person’s death, transplant advocates are calling to revive a different definition of death, namely cardiac death or circulatory death, which is “an irreversible cessation of circulation and heartbeat and breathing” (see article). In such cases, CPR is not performed and after a short wait, organs are removed. However, the problem is that there is no guarantee that the heart won’t restart by itself, so the question of how long to wait becomes a tricky one. Some hospitals wait five minutes while others only two. The trouble with waiting too long is that organs cut off from a nourishing blood supply cannot last very long. Surgeons in Michigan are starting to place donors on ECMOs (heart-lung machines) even before the donor’s heart stops beating. This ensures that the organs are not deprived of nourishment, but it also further blurs the line between life and death.
The Michigan doctors say the approach is a blessing. Family members have more time to say goodbye and a chance at getting some solace from their loss. “They are so pleased that the last act of the person’s life on Earth was to donate organs and save other people’s lives,” Punch said. Transplant surgeons say the chance to turn a death into an opportunity for life is a godsend. (See article)
Defining death is not as straight forward as it might seem. Of course, there are certainly clear cut cases. Taking a stroll through a cemetery reveals hundreds such cases. However, the moment that marks the exact boundary between life and death is much harder to define. Perhaps this is because there is no such moment, death being a process of a certain duration. Technological advancements such as ECMOs, however, can extend this process far beyond the short period it would normally take. Are such patients essentially in a state of dying, but not really dead or are they essentially alive due to the fact that the process of dying had been interrupted by the machines?
Just because machines are doing the breathing does not mean that the person is dead. By that definition, artificial hearts or pace makers would make the people who have them into walking corpses. Also, just because someone is in a coma, does not mean that they are ready to be harvested for organs. Perhaps an argument for the practice of recirculating blood in order to keep organs nourished hangs on the irreversibility of the donor’s condition. But again, not only is “irreversibility” not a certainty in all cases, but irreversibility itself does not seem to be reason enough to harvest organs from a living human being. We don’t generally think that extracting organs from patients in permanent vegetative states is permissible, even if such states are by definition irreversible and if such patients happen to be organ donors.
This is certainly a tricky question, especially since the patients involved are donors who have agreed to donate their organs after they die, but unless their advance directives state that organs are to be extracted while alive as long as it happens at the discretion of the doctors or family, the problem with the definition of death will continue to be an issue. Citing the number of lives that can be saved by the practice of extracting organs from a living person (even if irreversibly damaged), should not be used as an argument for such a practice particularly since the same argument can apply to extracting organs from any living person (I have in mind the classic objection to utilitarianism here).
I am not entertaining slippery slope worries, but I think that it is important to stress that the subtle details regarding our practices of extracting organs for transplantation should be thoughtfully considered, reasoned through, and explained. One moral worry I have is that such patients may not be viewed as persons by doctors eagerly waiting to extract vital organs in order to save the lives of other (more obvious?) persons. Can what the Michigan doctors are doing be done with a genuine air of respect and dignity that is owed to persons? Perhaps it can, but the reasons for such practices must reflect this respect and dignity. I am simply not convinced that, at least in all cases, merely focusing on what the family and other patients get out of it constitutes reasons that are saturated with genuine respect for the personhood of the donor.
What Sorts of People Should There Be? Do the Deceased Qualify?
When the Social Security Act was being written by Congress in 1939, no one thought that it might be possible to conceive a child posthumously. In 2003, 18 months after the death of her husband, Karen Capato, a Florida resident, gave birth to his (her husband’s) twins (see article). Robert, Karen’s husband, preserved his sperm in a sperm bank and gave written consent for its use by his wife before he died.
After her husband’s death, Karen applied for social security survivor benefits for the twins, but was denied because Florida laws recognize the eligibility of inheriting property only if the children who are to inherit property are named in a last will and testament. This apparently also translates into an ineligibility of the twins to receive survivor benefits. Robert could not have written the twins into his will because he did not know that they were going to exist at some point in the future. Regardless of whether or not he discussed possibilities with his wife, he had no way of knowing the genders or the number of children he would father posthumously.
There is, to my mind, a question of whether Karen’s twins can really be called “survivors” since they did not literally survive their father. And since it was Karen’s own choice to have them after her husband was already dead, perhaps counting on survivor benefits for aid was a tad premature and maybe even irresponsible. These worries aside, however, it is interesting to live at a time when technological advances create such problems for the legal system. After all, there is no question regarding biological parentage in this case. Half of Robert’s DNA had been willingly transferred to a future generation.
While thinking about what sorts of people there should be, we think in terms of human variation. However, we don’t always stop to consider why a variety of humans are “people” in the first place and what exactly makes them into “people.” It would be difficult (and likely hopelessly so) to argue that a sperm cell is a person. And yet, at the time of conception, that was all that remained of Robert. I would think that it would be absurd to insist that Karen’s twins are essentially fatherless (it is true that their father is dead, but it is not the case that they have not been fathered). It would be equally absurd to think of the doctors who prepared the fertilized egg as fathers (the medical team has no parental responsibilities toward the twins). Although the twins were not a result of sexual intercourse between Robert and Karen, their conception is an instance of sexual reproduction (Robert’s and Karen’s genetic material is present in equal proportions in the resulting offspring). So when asked who their parents are, the twins should refer to Robert and Karen and not just Karen or Karen and the hospital staff or even more absurdly to Karen and Robert’s sperm. So did Robert father the twins? I’d say he did! If that’s the case, then does he qualify to be represented under the general question of what sorts of “people” there should be? When we think about human variation, do the dead count? I think they do! If, by recognizing all kinds of people as “people,” we implicitly assume that we have duties toward them, then by making conceptual space for Robert and other deceased individuals (this also includes all of us at some point), we ought to recognize our duties toward the dead. Perhaps that should inform the court’s decision in the case of the twins even if they are not literally “survivors.”
Haraway and the (Im)possibility of Cyborg Eugenics – Presentation by Joshua St. Pierre
Last week, on March 23, 2012, Joshua St. Pierre, one of the summer interns from the Living Archives Project who is currently working on his MA in Philosophy at the University of Alberta, gave a presentation entitled, “Haraway and the (Im)possibility of Cyborg Eugenics.”
His abstract from the conference is as follows:
While the discourse of so-called “new eugenics” is becoming increasingly popular in cyberculture, I argue that new eugenics is discussed as a mere technological overlay of pre-existing eugenic ideologies, ideologies undercut by “A Cyborg Manifesto.” Donna Haraway’s cyborg resists the natural and essential properties (racial, class or genetic purity, normalized categories such as “feeble mindedness,” or binaries like primitive/civilized) which made twentieth century eugenic programs, and by extension new eugenics, possible. However, Haraway’s politically and eugenically resilient cyborg opens the possibility for a “cyborg eugenics” proper.
Instead of essential properties, Haraway argues that human diversity and biotic components must be conceived of in terms of “design, boundary constraints, rates of flow, systems logics, costs of lowering constraints” (162). Thus, the Harawaian cyborg translates the modern concepts of ‘eugenics’ and ‘perfection’ to the concepts of ‘population control’ and ‘optimization’ (161). While the terms ‘optimal’ and ‘population control’ lack the totalizing ideological overtones of a “master race” or the “feeble minded,” such categories force the choice of what sorts of people there should be, fragmented or not, and therefore what sorts of people there should not be.
Paralleling Hannah Arendt’s account of the banal holocaust logistician Adolf Eichmann, I argue that cyborg eugenics arise indirectly from the non-reflective fixation of the cyborg on optimizing technical problems. The Harawaian cyborg thus resists forms of eugenics rooted in claims of nature, telos or purity, but is seemingly unaware of the dark eugenic possibilities latent in the language of instrumentalization and optimization.
It was a very interesting presentation, that provided a lot to think about in terms of the role of eugenics as modern technology evolves and becomes incorporated in the human, and the role of eugenics in posthuman literature.
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
California’s dark legacy of forced sterilizations
A Prequel to Gattaca?
The 1997 film Gattaca, written and directed by Andrew Niccol, portrays a futuristic society where babies are genetically engineered according to parental references. The film features a society that consists almost exclusively of such artificially built individuals, with those who are born in the archaic, natural manner occupying the fringes of this society. In order to protect the rights of what are referred to as the “valids” and thereby keep out the inferior “invalids,” each individual’s genetic material is constantly sampled and monitored. Every person’s DNA is stored in a database, making multiple scans and random genetic sweeps in the workplace very efficient. The story follows an “invalid” who has a dream of becoming an astronaut, a job open only to the genetically enhanced elite.
But my intention here is not to provide a synopsis of the film, which is very good and is certainly well worth the time it takes to watch. Rather, I wanted to Continue reading
Sweden Moves to End Forced Sterilization of Transgender People
Sweden, “one of 17 [countries] in the European Union,” may soon change a law that requires transgendered people to become sexually sterilized if they decide to officially change gender. Sweden has made moves to repeal the law in January, only to be stopped by the Christian Democrat Party. However, this party has recently changed their mind, allowing the repeal to go through.
http://motherjones.com/mojo/2012/02/sweden-moves-to-end-forced-sterilization-transgender-people
This move was partially in thanks to an online petition, by AllOut (http://allout.org/en/actions/stop_forced_sterilization), which gained 80,000 international signatures to repeal the law. However, the date for repealing the law is still pending.
Countries that still require sterilization include France, Italy, Romania, Poland, Greece, and Portugal. For a map outlining the current status of European sterilization, you can link here: http://motherjones.com/mojo/2012/02/most-european-countries-force-sterilization-transgender-people-map
Ethicist gets hate mail
A Melbourne academic has triggered an ethical storm by suggesting it is acceptable to kill newborns in so-called after-birth abortions if parents do not want them.
Ethicist Francesca Minerva said yesterday that she had received hate mail since a provocative article she co-wrote with Dr Alberto Giubilini appeared online.
They argued after-birth abortion should be allowed in cases when abortion would be permitted, including if a child had a defect such as Down syndrome.
Even in cases where the baby was born perfectly healthy, parents should have the right to end the life of the child if their own wellbeing was at risk.
The researchers said a newborn baby and a foetus were “morally equivalent” and both were “potential people”.
“If criteria such as the social, psychological and economic costs for potential parents are good enough reasons for having an abortion even when the foetus is healthy…then the same reasons which justify abortion should also justify the killing of the potential person when it is as the stage of a newborn, they said.
Adopting out an unwanted baby was not necessarily a solution because the mother might suffer psychological distress from giving up her child for adoption.
Dr Minerva said the article was not intended for public debate but rather for discussion among bioethicists.
“This debate has been going on for 30 years,” she said.
The BMJ Group said the researchers had been subjected to personal abuse, including threats to their lives.
It said the concept of infanticide was not new and the researchers had made an argument that deserved to be heard without receiving hostile abuse.
Catholic Respect Life executive officer Bronia Karniewicz said the argument that killing a healthy baby rather than putting them up for adoption because it might better benefit the parents was disturbing.
the article can be found here: http://au.news.yahoo.com/thewest/a/-/wa/13056055/ethicist-gets-hate-mail/
