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.
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.
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
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
Headlines read: Michener Centre formerly the Provincial Training School (PTS) for Mental Defectives closes – celebration for some but not for everyone
A series of articles have been written about the closure of the Michener Centre. Living Archives team members, Leilani Muir and Bruce Uditisky have commented to reporters about their reactions to the closure. Both applaud the decision but many others criticize the decision to close Michener. The loss of jobs and the disruption for current residents are concerns for supporters of the institution. However, amidst mixed reaction the Michener stands as a reminder of our recent history of eugenics and the institutionalization of thousands of individuals. The shift towards a more inclusive society and away from isolation and initialization is a change towards recognizing and perhaps even appreciating human variation.
Here are links to several different articles: Continue reading
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
I have no desire to rekindle the flame of this man’s still unrepentant posture that ending Tracy’s life was a blameless act. My quarrel here is not with a Saskatchewan farmer, or an Ontario mother, or any other horribly misguided parent seeking to end the life of a disabled child. My quarrel is with the clichés and platitudes that both foster and condone a very particular homicidal impulse. It is a preposterous notion that Tracy’s life did not conform to the law of nature that Robert somehow epitomizes. The simplistic morality of pitting the “law of nature” against the “law of a nation” – the core assertion of Global’s Taking Mercy – must be exposed for what it is: a fundamentally eugenic rhetoric.
Check out Catherine Frazee on Global’s “Taking Mercy”, and on the Latimer case more generally, from whom this paragraph is taken.
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.
On April 18, 2012, I posted an article from the Toronto Star, detailing how hospitals in the GTA have been telling their staff to stop telling the sex of a fetus from an ultrasound to parents, in order to prevent gender-based abortions. Recently, the CBC used “hidden cameras” in order to explore the state of the situation in private ultrasound clinics across Canada. Their discoveries are detailed in the article below.
Gender testing is very prevalent in private clinics, and further, Canada offers no law preventing clinics from sharing gender with parents before the 20 week mark (after which most doctors will not provide abortions), unlike China, India, and the UK. The US recently tried to pass a similar law, but the proposal fell through, as it was determined to be impossible to prove why parents would request gender.
The article suggests that further education would be greatly beneficial to parents on the value of both female and male children.
The Toronto Star recently released an article on the fact that many GTA hospitals, “particularly those in ‘ethnic’ areas [...] won’t let their ultrasound staff tell pregnant women the sex of the fetus,” in order to prevent abortion.
A study from St. Michael’s Hospital reveals that while male/female rations for first child of immigrants from India is 105/1oo, the ratio for third children of immigrants was 136/100. Although researchers caution that their findings are not actually evidence of female feticide (indeed, they do not know why results have turned out as such) and urge people not to racially profile citizens after that, it has caused some concern in the community, and resulted in withheld ultrasounds.
Bioethicist, Tom Koch, commented on pregnant women who choose to abort a fetus with Down syndrome, “We’re engaged in eugenics.”
Annette says she wants the right to euthanize her severely-disabled children, who are being kept alive only by feeding tubes. What would you do? Then, former model, Stephanie Vostry, says she’s fighting to survive chronic Lyme disease, an illness some believe she may be faking. Plus, chronic Lyme disease hits close to home for a “Dr. Phil” staff member.
Dr Phil polls the audience
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.
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.”