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

Alberta Eugenics Awareness Week 2012: Highlights Video

Well, at last, here it is.  Watch, enjoy, share, like.

Disability Rights V Quality Birth Rhetoric: The Construction of Disability in China

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.

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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.

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Hope is NOT a Plan

Canadians with disabilities are about one and a half times as likely to be victims of violence as other Canadians. People with disabilities in Canada have civil rights on paper but not in practice. Canadian citizens, everyday, have their civil rights ruthlessly violated by their government.  This has to be stopped, because Hope is Not a Plan!

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Why The Michener Centre Must Close

Recently, the Alberta government announced the future closure of the Michener Centre, an institution that houses people with developmental disabilities in Red Deer, Alberta. The centre is home to some 125 Albertans with developmental disabilities and has been in operation since the 1950′s.

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Life is better outside Michener Centre

Support for the closure of Michener Centre

Our family supports the closure of Michener Centre! Everyone can live in community!

Family members write about their support for closing Michener in the Red Deer Advocate. Many supportive comments follow the article. Follow the link at the bottom to view the letter online.

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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

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

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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.

Pride Week Eugenics Panel Poster

Pride Week Eugenics Panel Text

Articles and Audio clips on the closure of Michener

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

“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.

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.


http://www.aph.gov.au/Parliamentary_Business/Committees/Senate_Committees?url=clac_ctte/forced_sterilisation/info.htm

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

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: 


99 Balloons:

“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.

Eugenics in Toronto – Hiding Ultra-sound results

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.


http://www.thestar.com/news/article/1162357–female-feticide-is-it-happening-in-ontario?bn=1


http://www.thestar.com/news/article/1162613–six-gta-hospitals-won-t-reveal-fetal-sex-during-ultrasound?bn=1


http://www.thestar.com/opinion/editorialopinion/article/1163258–hiding-toronto-hospital-ultrasound-results-to-prevent-sex-selection-is-pointless-and-possibly-racist

Bioethicist, Tom Koch, commented on pregnant women who choose to abort a fetus with Down syndrome, “We’re engaged in eugenics.”

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.”