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
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.
Barbara Farlow has emailed to inform us about a recent publication in Pediatrics which gives a voice to parents and their children, like Annie, who have trisomy 13/18. Here are a few related links:
The news release from the University of Montreal: http://www.nouvelles.umontreal.ca/udem-news/news/20120723-children-with-trisomy-13-and-18-and-their-families-are-happy.html
Journal Abstract: http://pediatrics.aappublications.org/content/early/2012/07/18/peds.2012-0151.abstract
Canadian Press Article (Helen Branswell): http://www.globalnews.ca/canada/health/parents+of+babies+born+with+disabling+anomalies+report+they+enrich+families/6442684259/story.html
Reuters: http://www.reuters.com/article/2012/07/23/us-parents-doctors-kids-clash-idUSBRE86M02O20120723
And a few videos about children with trisomy:
Mieko: http://www.youtube.com/watch?v=cteTcuI-xYI
99 Balloons:http://www.youtube.com/watch?v=th6Njr-qkq0
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.
h/t Anne Pasek
For those that missed the controversy, towards the end of February Rick Santorum (current candidate for the Republican presidential leadership bid) argued that, ” a lot of prenatal tests are done to identify deformities in utero, and the customary procedure is to encourage abortions.” His argument was roughly as follows: since prenatal screening leads to an increase in abortions, and since abortion is morally reprehensible, the morality of prenatal screening should also be considered. He was also, however, making the point that prenatal screening leads to a new form of eugenics — one that targets a fetus which exhibits abnormalities and deformities which are deemed undesirable. These arguments set off a firestorm of controversy.
Emily Rapp wrote a reply, “Rick Santorum, Meet my Son”, in which she claims that if she had determined that her son would have been born with Tay-Sachs (as he was), that she would have chose to abort her fetus.
If I had known Ronan had Tay-Sachs (I met with two genetic counselors and had every standard prenatal test available to me, including the one for Tay-Sachs, which did not detect my rare mutation, and therefore I waived the test at my CVS procedure), I would have found out what the disease meant for my then unborn child; I would have talked to parents who are raising (and burying) children with this disease, and then I would have had an abortion. Without question and without regret, although this would have been a different kind of loss to mourn and would by no means have been a cavalier or uncomplicated, heartless decision.
But it seems like both sides are talking passed each-other a bit here. It seems necessary to recognize the potential dangers for a form of newgenics — something that can be informed by our understanding of the history of eugenics, and the ways in which new technologies can reassert these tendencies. But it also seems necessary to recognize the potential value of pre-natal screening technologies, and to recognize the very real pain that diseases like Tay-Sachs impart on the child.
Thanks to Velvet Martin who has informed us of Chromosome 18, an organization dedicated to the advocacy of individuals with chromosome 18 abnormalities in an effort to help them “overcome the obstacles they face so they might lead happy, healthy and productive lives.”
More information on the organization can be found at their website. And here’s a video introducing the registry.
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
The Anoka-Hennepin Independent School District 11, located just north of Minneapolis, changed its policy of neutrality regarding questions of sexual orientation in favour of active affirmation of the dignity of all students regardless of their race, disability, or sexual orientation. The New York Times reports:
In response to conflicting pressures, Anoka-Hennepin officials had devised an unusual policy, directing teachers to remain neutral on any questions involving sexual orientation. But some teachers said that this hampered their ability to support gay students and that the overall climate was still hostile. Last month, the district rescinded the neutrality policy in favor of a requirement to “affirm the dignity and self-worth of students” regardless of race, sexual orientation, disabilities or other factors. In addition, according to the new agreement, the district will strengthen measures to prevent, detect and punish bullying based on gender or sexual orientation, hire a full-time “harassment-prevention” official, bolster mental health counseling and identify harassment “hot spots” on the campuses of middle and high schools.
However, the Anoka-Hennepin Parents Action League (see their website here) complained that “[m]aking schools safe for ‘gay’ kids means indoctrinating impressionable, young minds with homosexual propaganda” (see The New York Times). The Parents Action League website states that
Teaching about sexual orientation is not a part of the District adopted curriculum; rather, such matters are best addressed within individual family homes, churches, or community organizations.
Two things are quite striking here and both are examples of narrow-minded groups making students worse off by making themselves vocal. First, and most obviously, the reported statement that “[m]aking schools safe for ‘gay’ kids means indoctrinating impressionable, young minds with homosexual propaganda” is outrageous in itself especially since it implies that what I take to mean the majority (that is, the heterosexual kids) are better served if ‘gay’ kids are not protected from bullying. I am not sure whether the parents who agreed on such a formulation in their e-mail were appealing to some seriously misguided utilitarian calculation or whether they were just expressing their support for bullying based on sexual orientation? Either way, the statement represents an unusually ugly thought!
Second, the statement on the Parents Action League website is a further testament to the dangers of giving narrow minded and aggressively fearful groups power over the education of future generations. Statements like: “[t]eaching about sexual orientation is not a part of the District adopted curriculum; rather, such matters are best addressed within individual family homes, churches, or community organizations” is reminiscent of burning the “Satanic” Harry Potter Books (see the 2001 BBC News Story). All such practices will do (practices of withdrawing educational content from the curriculum and relegating it to the home), and I imagine that this is the hope of the Parents Action League, is to perpetuate discrimination based on sexual orientation precisely because homophobic parents seem to want to shield their children from any statements that confer dignity and self-worth upon homosexual students.
Parents should certainly play a greater supportive role in their children’s education. Having had teaching experience at the secondary education level, I have seen my share of too much resentment toward teachers for the low achievement of their child and too little active participation in the child’s education. Of course, this is not descriptive of all, or even most, parents. However, participation in a child’s education should not come in the form of lobbying to truncate the educational experience of students. If schools are to teach only the core subjects (math, social, science, and english), and remain silent (since being neutral in this context just means staying silent) on all other issues, then the quality of citizens leaving the school system will be poor indeed.
Fortunately, the Anoka-Hennepin Independent School District 11 went ahead with its new policy. Perhaps once they eradicate bullying based on sexual orientation in their hallways, they will start to fight the source of bullying, namely the opinions and beliefs of homophobic parents!
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.
In an effort to avoid gender stereotyping, Beck Laxton and partner Kieran Cooper concealed the gender of their son from the world. The gender neutrally named Sasha has now turned five and is starting school. Prior to the commencement of formative school years, Sasha has been given the choice to dress in clothes that appealed to him, be they hand-me-downs from an older sister or an older brother. When Sasha turned five, his parents were forced to reveal his gender, which means that Sasha will have to get used to being perceived as a boy by his peers. Although the school requires different uniforms for boys and girls, Sasha’s mom is intervening by letting Sasha wear a girl’s blouse with his pants.
Last year, a different couple made a similar decision not to reveal their child’s gender. Some psychiatric experts voiced their concerns:
“To have a sense of self and personal identity is a critical part of normal healthy development,” Dr. Eugene Beresin, director of training in child and adolescent psychiatry at Massachusetts General Hospital, told ABC News. “This blocks that and sets the child up for bullying, scapegoating and marginalization.”
The article continues:
But as parents well know, bullying is hard for any child to avoid. It’s more important to raise someone who’s confident enough in himself to overcome peer pressure. It’s also important to have his parents have his back.
The question of personal identity is interesting as gender is certainly a big part of it. However, that’s precisely the problem couples like Beck Laxton and Kieran Cooper are attempting to avoid. The question of bullying, scapegoating and marginalization is a bit trickier since such actions are certainly a product of dogmatically ingrained gender stereotyping, but they will not cease to exist just because Sasha’s parents have grown past them. Although bullying may well be hard for any child to avoid, some children do get bullied more than others. And although Laxton and Cooper are trying to inculcate a sense of self and others in Sasha, which they hope will be lacking gender stereotyping, are they also not sacrificing their child’s emotional and physical safety by setting him up for potential bullying? It is quite important to raise someone who’s confident enough in him or herself to overcome peer pressure, but it could also be the case that exposing a child to more risk of bullying may have an adverse effect on his or her confidence.
That’s not to say that Sasha will be bullied, but it will depend on his environment. If Laxton and Cooper chose an appropriate school, perhaps their goal of raising their son to be confident in himself and have a valuable dual perspective on gender will not be compromised by the very gender stereotypes they are attempting to undermine. “Egalia,” a preschool in Stockholm, Sweden comes to mind (as an example of the kind of environment in which Sasha could flourish). Staff do not use words like “him” or “her,” but rather a made-up neutral term and students are encouraged to do the same. Moreover, traditional “boy” and “girl” toys are spatially integrated so as to obliterate any value systems associated with stereotypical gender preferences. For those interested, here is the article.
Bullying has not ceased in spite of a laudable movement to curb it. Although Laxton and Cooper’s hearts may be in the right place, they have influence only over Sasha’s worldview and not that of other children (who get theirs from their own parents or guardians). Are they putting Sasha at risk, as Dr. Eugene Beresin claims? And if the answer is yes, are they entitled to make such choices for Sasha if they lead to increased risk of bullying, which could potentially be developmentally as well as physically harmful?
The New York Times recently published an article on the medical debate over the definition of autism — whether it has been defined too loosely, and needs to be narrowed. The article explores some of the potential consequences that the outcome of this debate could have, and looks to the anger and fear that has been generated amongst many parents with children currently defined as autistic. Amy Harmon writes,
A study reported on Thursday found that proposed revisions to theAmerican Psychiatric Association’s definition would exclude about three-quarters of those now diagnosed with milder forms of autism called Asperger syndrome or “pervasive developmental disorder, not otherwise specified,” also known as P.D.D.-N.O.S. These are people who have difficulties with social interaction but do not share the most severe impairments of children with classic autism.
Some parents fear that children deemed “on the edge” of autism will have their treatment options limited with the proposed narrowing of the definition. In contrast, some parents with severely autistic children support narrowing the definition.
“Everyone on the spectrum benefits when money and services available are applied more specifically and appropriately to the individual needs of each person affected,” said Mark L. Olson, of Henderson, Nev., whose daughter, 16, does not speak. Mr. Olson has argued on hisblog that those with more severe needs have been overshadowed by people with the Asperger diagnosis, who have typical intelligence and language development.
The article goes on to discuss the implications that labelling a child with ‘autism’ has on that child. On the one hand, it often opens up the opportunity for treatment, while on the other, the child is deemed abnormal.
Interesting the reason mentioned in the piece
http://www.dailycomet.com/article/20110815/ARTICLES/110819715/1314?Title=-8216-Angel-was-taken-away
Call for Papers
“Breeding the Nation: Eugenics, Culture, and Science in the United States, 1900-1940”
Workshop 13 of the 2012 Biennial EAAS Conference
The Health of the Nation
26–29 March, Izmir, Turkey
for more information about the conference, see the EAAS site at
http://www.eaas.eu/conferences/eaas-biennial-conferences/information-izmir-2012
Chair Bob Rydell, Montana State University rwrydell@gmail.com, and Jaap Verheul, Utrecht University j.verheul@uu.nl.
h/t Doug Wahlsten.
North Carolina state flag
The state of North Carolina has recently been revisiting its extensive eugenic past, and the latest move is a statement of support for compensation for sterilization victims from the director of Legal and Regulatory Studies at the John Locke Foundation. Eugenic sterilization legislation was in place in NC until 1979; there are slightly fewer than 3000 living survivors of the regime of sterilization that was in place in NC until that time.
The full story is in the Lincoln Tribune.
Below is a press release put out yesterday by the Women’s Legal Education and Action Fund (LEAF) and the Disabled Women’s Network Canada (DAWN). The two organizations will intervene on a case before the Supreme Court that could potentially have serious impacts on the rights of women generally and those of disabled women specifically.
There are several important issues that are going to have to be considered in the case, particularly the systemic barriers to employment face by disabled people and disabled women in particular and the inherently problematic, and all too frequent, attempts to judge the abilities or lack of abilities of a person based on brief, and not necessarily representative, observations of that person.
I hope the Supreme Court will do the right thing and overturn the lower courts decision. Read the full press release below.
Below is a press release that is being circulated today by the Council of Canadians with Disabilities. The release concerns a decision by Immigration Canada to reject a family’s immigration application because the family includes a disabled child.
Sweeping immigration restrictions were an important part of the eugenics movement in Canada and the US. However, I think it is not quite right to call the rejection of this family’s immigration application a form of eugenics. I think it makes a difference that an important motivation for immigration restrictions in the past was that immigrants would breed with “Canadians” and “Americans” and produce “inferior stock”. I don’t believe that is what is motivating immigration restrictions like the one discussed in the press release.
That said, what I think is true is that similar sorts of attitudes about disability underlie both historical and contemporary immigration restrictions and that such restrictions are far too sweeping and constitute a form of discrimination.
The most important attitudes that I think underlie both historical and current immigration restrictions are 1) that disability is a financial burden that the public has the right to refuse to bear, and 2) that disability is the result of some sort of biological defect possessed by an individual. It seems to me much harder to justify preventing this family from living in Canada once it’s recognized that any additional costs associated with disability (granting for the sake of argument that there are such costs, though they are often exaggerated) are the result of unjust and badly designed products, services, and institutions, which the Canadian government is largely responsible for creating and perpetuating.
Full press release is below.
Many stories like this (this one from the Mirror; h/t Velvet Martin) out there. Does anyone know the legislative basis for these interventions in the UK? One prong in many pieces of eugenics legislation was “incapable of parenting”–the other was “prospect of transmission of mental defectiveness”. So this makes you wonder how far we are from that eugenic past.
On Mother’s Day.. the heart warming story of a girl who had to fight for the right to bring up her own child
Strolling along the beach, her young son in her arms, Kerry McDougall prepares for the perfect Mother’s Day – one that last year she could only dream of.
For 12 months ago tiny Ben was in care and Kerry’s life was in tatters – after social workers deemed her both too stupid to look after her son AND not even bright enough to wed her fiancé Mark.
Ben was just three days old when social workers marched into the maternity ward where Kerry was breastfeeding and took him away.
It was the start of a long, heartbreaking battle to become a proper family.
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.
