Reflections on World Down Syndrome Day 2014

March 21st is World Down Syndrome Day, and 2014 is the ninth year in which it has been held, and the third in which it has been recognized by the United Nations. I want to start this post with an already-widely viewed video from CoorDown that has been up for less than a week, and step back from there.  The video is called “DEAR FUTURE MOM”:

At the time of writing, this video had been viewed over 1.6 million times in 6 days, with over 500 comments on it.  It’s clearly designed to be emotional and to directly send a number of messages, including at least these: anxieties about having a child with Down syndrome are understandable but overblown; children with Down syndrome will likely bring much joy and richness to the lives of any family they are in, and particularly to mothers; and Down syndrome does not obliterate or subhumanize the person who has it.

The need for those messages, and perhaps others, to be sent, loud and clear, is grounded in the sad fact that parental fears associated with potentially having a child who will have Down syndrome are amongst the highest risk factors for people with Down syndrome.  This is because Continue reading

Truth & Reconciliation Commission – Edmonton March 27 – 30, 2014

For 116 years, thousands of Aboriginal children in Alberta were sent to Indian Residential Schools funded by the federal government and run by the churches. They were taken from their families and communities in order to be stripped of language, cultural identity and traditions.

Canada’s attempt to wipe out Aboriginal cultures failed. But it left an urgent need for reconciliation between Aboriginal and non-Aboriginal peoples.

There were more Indian Residential Schools in Alberta than in any other province. The Truth & Reconciliation Commission of Canada (TRC) is holding its Alberta National Event in Edmonton this year.

Come and share your truth about the schools and their legacy. Witness and celebrate the resilience of Aboriginal cultures.
(excerpt from TRC.ca)

Alberta National Event – March 27 – 30, 2014 will be held in Edmonton at the Shaw Conference Centre 9797 Jasper Avenue. No registration needed to attend. Those wishing to provide a statement to the Commission may register onsite during the event.

You can download the program click here

On Thursday March 20 from 3:00 pm – 5:00 pm at the University of Alberta, Lister Centre, Maple Leaf Room
Understanding the TRC: Exploring Reconciliation, Intergenerational Trauma, and Indigenous Resistance featuring:

Commissioner Dr. Wilton Littlechild
Dr. Rebecca Sockbeson
Dr. Ian Mosby
James Daschuk
Dr. Keavy Martin
Tanya Kappo
Moderated by Jodi Stonehouse

Reception 5:00 pm – 6:00 pm – Tea, bannock and berries. Event is free.

Gala Reading featuring:
Marilyn Dumont
Daniel Heath Justice
Eden Robinson
Gregory Scofield
Anna Marie Sewell
Richard Van Camp

Friday, March 21 from 7:30 pm – 9:30 pm in Humanities Centre L-1 (111th Street and Saskatchewan Drive)
Giveaways. Books for sale. Free Admission

You find this information and links to campus maps here

What happens when your son tells you he’s really a girl? Inside the families embracing the new world of gender variance

Some medical professionals see gender variance as a natural characteristic of human diversity, similar to sexual preference, that should be accepted and even celebrated. An article in Macleans (Jan 6, 2014) explores the lives of supportive families and their trans and gender variant children..

The Public Health Agency of Canada published comprehensive recommendations in 2010 for schools to support gender-variant students and several provincial governments have added “gender expression” to the list of prohibited grounds for discrimination. The tides may be turning but the need for education is high. The negative judgement of trans individuals suggests there is a 17% higher risk for suicide and even higher risks for being bullied by others.

The Macleans article also has a short video embedded within and pictures throughout, providing a glimpse into the daily lives of trans and gender-variant children and their families. This is an excellent introduction and movement towards educating the public and advancing the needs of trans youth – which is a natural characteristic of human variation.

You can read the article here: http://www2.macleans.ca/2014/01/13/what-happens-when-your-son-tells-you-hes-really-a-girl/

 

In the United States the National Gay and Lesbian Task Forces and the National Center for Transgender Equality conducted a survey of 6,450 trans and gender non-conforming individuals from all 50 states. This study was the first of its kind and provides us with a clear picture of what needs to change in order to stop the injustice in their lives..

Discrimination against trans and gender variant individuals provides critical data for policymakers, community activists and legal advocates to confront the appalling realities. Respondents experience higher levels of poverty and a staggering 45% of those survey reported attempting suicide. Harassment and discrimination in education was reported at alarmingly high rates and include physical assault (35%) and sexual violence (12%). Harassment was so severe that it led to almost 15% to leave school in K-12 settings or in higher education..

Abuse by Police, discrimination in health care and public accommodations, employment discrimination and economic insecurity, as well as housing discrimination, barriers to receiving updated documents (identification and personal records). The 6,450 individuals all reported that family acceptance was of great importance, although the majority reported experiencing family rejection. Despite all of the harassment, mistreatment, discrimination and violence faced by trans individuals the study demonstrates their determination, resourcefulness and perseverance. This report is a call to action for all of us, especially for those who pass laws and write policies. Inaction is a form of violence that will negatively affect trans and gender variant people. Take up the call for human rights for transgender, transsexual, trans, and gender variant people and confront the patterns of abuse and injustice. Let’s learn (and teach) the values of human variation to our children, to each other and let’s learn more ourselves!.

You can access the full report titled “Injustice at every Turn” here: http://www.TheTaskForce.org or here: wwww.TransEquality.org. You can also get more information about the survey at: http://www.EndTransDiscrimination.org

Judge approves man’s sterilization

It is the first time in England and Wales a court has sanctioned a man’s sterilization. A High Court judge has sanctioned the sterilization of a man “in his best interests” in a landmark legal ruling.
The 36-year-old, from the Midlands, has learning difficulties and already has a son, born in 2010, with his girlfriend.
Justice Eleanor King ruled that a vasectomy could take place after hearing that another child could cause the man :psychological harm.”
Experts said he was capable of sexual consent but did not have the capacity to make decisions about contraception.

The entire story was released today in the BBC News and can be viewed here: http://www.bbc.co.uk/news/uk-23721893

Andrew Solomon: Far from the tree

Andrew Solomon’s book, Far From the Tree, provides a fresh perspective on families and disability culture with his notions of vertical and horizontal identities. Although it certainly connects with work in disability studies and notions of deviance. It provides something new. In this talk, Solomon talks about various kinds of differences in families.

Dick Sobsey on parenting and intensive needs

The Agony and the Ecstacy of Parenting a Child with Intensive Needs

by Dick Sobsey

This post is for parents of children or adults with MECP2 Duplication Syndrome but it is also for all parents of children or adults with intensive needs. It is about how having a child with intensive needs changes our lives so fundamentally… about how challenging and sometimes painful it makes our lives…. but also how it enriches our lives and makes our lives better in some ways.  To read more: http://networkedblogs.com/NMw4h

Nutritional Experiments on Aboriginal Peoples in the News

As a follow-up to the previous post, “Hungry aboriginal kids, adults were subject of nutritional experiments“, here is some coverage of the events through the Toronto Star and CBC.  Article highlights are as follows.

After World War II, the Canadian government subjected aboriginal children and adults to nutritional experiments without their consent.  Many of these experiments were conducted in order to gather information about what the human body needs in terms of vitamins and nutrition.  It resulted in lack of dental care for Aboriginal peoples as well, in order to use gum health as an undistorted measuring tool for scientists (Livingstone, Toronto Star).

Justice Murray Sinclair, chair of the Truth and Reconciliation Commission, states in the Toronto Star that

“This discovery, it’s indicative of the attitude toward aboriginals,” Sinclair said. “They thought aboriginals shouldn’t be consulted and their consent shouldn’t be asked for. They looked at it as a right to do what they wanted then.” (Sinclair, July 21 2013)

It is likely that even at the time, these experiments were seen as ethically dubious (perhaps especially after the atrocities of World War II), and therefore probably why Ian Mosby, the post-doctorate from the University of Guelph, whose research brought these policies to life, uncovered only “vague references to studies conducted on ‘Indians’” while researching the development of health policy for a different project (Livingstone, Toronto Star).

Mosby elaborates, again suggesting the classification of Aboriginals as less than other people,

“I think they really did think they were helping people. Whether they thought they were helping the people that were actually involved in the studies — that’s a different question.” (Mosby, July 21 2013)

The CBC provides archival material from via historian James Daschuk, of a 1946 report of the lives of First Nations in Northern Manitoba.

1946 Report: Medical survey of nutrition among the Northern Manitoba Indians

You can read the full articles through the links below:

Toronto Star: http://www.thestar.com/news/canada/2013/07/16/hungry_aboriginal_kids_used_unwittingly_in_nutrition_experiments_researcher_says.html

CBC: http://www.cbc.ca/thecurrent/episode/2013/07/18/starvation-politics-aboriginal-nutrition-experiments-in-canada/

Hungry aboriginal kids, adults were subject of nutritional experiments

New historical research reveals that Canadian government bureaucrats conducted nutritional experiments on hungry aboriginal children and adults. Ian Mosby, PhD, is a Historian of Food and Nutrition and while doing postdoctoral work at University of Guelph he came across references to studies conducted on “Indians”.

“This was the hardest thing I’ve ever written,” said Ian Mosby, who has revealed new details about one of the least-known but perhaps most disturbing aspects of government policy toward aboriginals immediately after the Second World War.

Mosby — whose work at the University of Guelph focuses on the history of food in Canada — was researching the development of health policy when he ran across something strange.

“I started to find vague references to studies conducted on ‘Indians’ that piqued my interest and seemed potentially problematic, to say the least,” he said. “I went on a search to find out what was going on.”

Government documents eventually revealed a long-standing, government-run experiment that came to span the entire country and involved at least 1,300 aboriginals, most of them children.

It began with a 1942 visit by government researchers to a number of remote reserve communities in northern Manitoba, including places such as The Pas and Norway House.

They found people who were hungry, beggared by a combination of the collapsing fur trade and declining government support. They also found a demoralized population marked by, in the words of the researchers, “shiftlessness, indolence, improvidence and inertia.”

The researchers suggested those problems — “so long regarded as inherent or hereditary traits in the Indian race” — were in fact the results of malnutrition.

Instead of recommending an increase in support, the researchers decided that isolated, dependent, hungry people would be ideal subjects for tests on the effects of different diets.

“This is a period of scientific uncertainty around nutrition,” said Mosby. “Vitamins and minerals had really only been discovered during the interwar period.

“In the 1940s, there were a lot of questions about what are human requirements for vitamins. Malnourished aboriginal people became viewed as possible means of testing these theories.”

The first experiment began in 1942 on 300 Norway House Cree. Of that group, 125 were selected to receive vitamin supplements which were withheld from the rest.

At the time, researchers calculated the local people were living on less than 1,500 calories a day. Normal, healthy adults generally require at least 2,000.

“The research team was well aware that these vitamin supplements only addressed a small part of the problem,” Mosby writes. “The experiment seems to have been driven, at least in part, by the nutrition experts’ desire to test their theories on a ready-made ‘laboratory’ populated with already malnourished human experimental subjects.”

The research spread. In 1947, plans were developed for research on about 1,000 hungry aboriginal children in six residential schools in Port Alberni, B.C., Kenora, Ont., Schubenacadie, N.S., and Lethbridge, Alta.

One school deliberately held milk rations for two years to less than half the recommended amount to get a ‘baseline’ reading for when the allowance was increased. At another, children were divided into one group that received vitamin, iron and iodine supplements and one that didn’t.

One school depressed levels of vitamin B1 to create another baseline before levels were boosted. A special enriched flour that couldn’t legally be sold elsewhere in Canada under food adulteration laws was used on children at another school.

And, so that all the results could be properly measured, one school was allowed none of those supplements.

Many dental services were withdrawn from participating schools during that time. Gum health was an important measuring tool for scientists and they didn’t want treatments on children’s teeth distorting results.

The experiments, repugnant today, would probably have been considered ethically dubious even at the time, said Mosby.

“I think they really did think they were helping people. Whether they thought they were helping the people that were actually involved in the studies, that’s a different question.”

He noted that rules for research on humans were just being formulated and adopted by the scientific community.

Little has been written about the nutritional experiments. A May 2000 article in the Anglican Journal about some of them was the only reference Mosby could find.

“I assumed that somebody would have written about an experiment conducted on aboriginal people during this period, and kept being surprised when I found more details and the scale of it. I was really, really surprised.

“It’s an emotionally difficult topic to study.”

Not much was learned from those hungry little bodies. A few papers were published — “they were not very helpful,” Mosby said — and he couldn’t find evidence that the Norway House research program was completed.

“They knew from the beginning that the real problem and the cause of malnutrition was underfunding. That was established before the studies even started and when the studies were completed that was still the problem.”

The original article can be found here: http://www.winnipegfreepress.com/arts-and-life/life/sci_tech/hungry-aboriginal-kids-adults-were-subject-of-nutritional-experiments-paper-215688421.html

Mosby’s published paper “Administering Colonial Science: Nutrition Research and Human Biomedical Experimentation in Aboriginal Communities and Residential Schools, 1942–1952″ can be found in the journal “Social History” Volume 46, Number 91, May 2013, pp. 145-172.

The abstract for Mosby’s paper on the study can be found here: http://muse.jhu.edu/login?auth=0&type=summary&url=/journals/histoire_sociale_social_history/v046/46.91.mosby.html

Mosby’s blog can be found here: http://www.ianmosby.ca/

Provincial Training School on Wikipedia

An article on the Provincial Training School in Red Deer, Alberta, aka the Michener Centre, has just appeared on Wikipedia.  It is based on work that Mona Horvatic did as a student in Philosophy 217 (Biology, Society, and Values) in Winter 2011, with additional work to bring it to completion being undertaken by Andrew Ball as a summer RA for Living Archives.  This will be the first in a series of Wikipedia articles on Canadian eugenics to finally make their way onto Wikipedia, joining about 10 others already there.  So, if it keeps raining where ever you are for YOUR summer, you’ll have something to read …

http://en.wikipedia.org/wiki/Provincial_Training_School

Rob Sparrow: talks on eugenics TODAY in Edmonton

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

“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

Contemporary practices of sterilization in Australia

As a follow up to the post in the first link below, here is a list of further related links on those wanting to know more.  Thanks to a helpful anonymous reader of the What Sorts blog who provided most of the links below but who doesn’t wish to be identified.  Folks in Oz: let us know if you have more information, are undertaking action, whatever.

A voice for Annie and children with trisomy

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

“A fundamentally eugenic rhetoric”

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.

Rick Santorum and prenatal screening

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.

Chromosome 18 Registry & Research Society

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.

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

Parent Bullies: Homophobic Parents Protest Making Schools Safe for ‘Gay’ Kids

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!

“I Had Asperger Syndrome. Briefly.”

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

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