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

Death by government: “and the vast majority are aboriginal”

The Edmonton Journal has just run a story, “Fatal Care: Foster Care Tragedies Cloaked in Secrecy”, following a four-year struggle to access government records on the foster care system and deaths in them.  According to the report, the number of deaths that occurred amongst children who had been removed from their parents by child protection staff for their own safety is 300% more than the number reported by the government.  And a “third of children who die in care are babies, another third are teenagers, and the vast majority are aboriginal.”  You can read the article here http://www.edmontonjournal.com/life/Fatal+care+Foster+care+tragedies+cloaked+secrecy/9203131/story.html .  There is a lot to absorb in it. 

AEAW 2013: quick report and thanks

Well, Alberta Eugenics Awareness Week is over for another year.  Thanks to all of those who contributed and participated, and to Moyra Lang for pulling it all together.  Every event this year was very well attended, and we drew largely non-overlapping audiences for talks on eugenics and indigenous peoples, feminism, childhood, hippies, and more!  The world premiere of our “Surviving Eugenics in the 21st-Century: Our Stories Told” drew a full house of over 400 people to the Metro Cinema, and our other evening events, the Friday night screening of “Fixed: The Science / Fiction of Human Enhancement”, and the Tuesday night “Difference and Diversity” performance night, had healthy crowds of just under 100.  Thanks to our cosponsors–the Departments of Educational Policy Studies, Philosophy, Sociology, History and Classics, Rehabilitation Medicine, Women’s and Gender Studies, and Human Ecology, as well as the John Dossetor Health Ethics Centre and the Faculty of Native Studies.

Christine Ferguson visiting at the U of Alberta this week

We’d like to draw attention to the upcoming visit of Living Archives team member Christine Ferguson to the University of Alberta this week.  Chris, who was formerly at the University of Alberta, will give talks on Wednesday and Friday, one as part of a series on Alfred Russel Wallace, the other in the Department of English and Film Studies—details below.   Please contact Rob (rwilson.robert@gmail.com) or Moyra (moyra@ualberta.ca) if you want to meet with her during her week here.

Biography: Christine Ferguson is a Senior Lecturer in English Literature at the University of Glasgow. Her research focuses on late Victorian literature and culture, with an emphasis on the interconnections between science and popular fiction at the fin-de-siècle.  Her publications include Determined Spirits: Eugenics, Heredity, and Racial Regeneration in Anglo-American Spiritualist Writing, 1848-1930 (Edinburgh University Press, 2012), Language, Science, and Popular Fiction at the Victorian Fin-de-Siècle: The Brutal Tongue (Ashgate 2006), Continue reading

Future Past: Disability, Eugenics, and Brave New Worlds

from Marcy Darnovsky from the Center for Genetics and Society, with whom Living Archives is partnering for this upcoming conference.  Please register NOW to avoid disappointment, as we are already more than 2/3 full.  —raw

 

*****

As you probably know, plans are well underway for Future Past: Disability, Eugenics, and Brave New Worlds, the day-long symposium on November 1 at San Francisco State University. It’s shaping up to be a very exciting event!

Please take a look at the program, the poster, and the registration page. (Just to make sure those links come through, you can reach everything from http://www.geneticsandsociety.org/futurepast.)

On behalf of the organizing committee – Emily Beitiks, Rob Wilson, Alex Stern, Milton Reynolds and myself – we really hope you’ll come. Please do register soon, as we’re expecting a full house.

Warmly,
Marcy*****

Individualism and Eugenics

h/t to Ken Bond; from Nathaniel Comfort at the Scientific American blog:

Is eugenics a historical evil poised for a comeback? Or is it a noble but oft-abused concept, finally being done correctly?

Once defined as “the science of human improvement through better breeding,” eugenics has roared back into the headlines in recent weeks in both Mr. Hyde and Dr. Jekyll personae. The close observer may well wonder which will prevail. The snarling Mr. Hyde is the state control over reproduction.

To read the full story:

http://blogs.scientificamerican.com/guest-blog/2013/08/23/is-individuality-the-savior-of-eugenics/

 

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

Eugenic sterilization NOW

courtesy of Miroslava Chavez-Garcia and from The Modesto Bee:

Female inmates sterilized in California prisons without approval

Published: July 7, 2013 Updated 8 hours ago

http://www.modbee.com/2013/07/07/2796548/female-inmates-sterilized-in-california.html

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.

“The Invisible Child” wins Alberta Literary Awards Prize

Leilani Muir (centre) with Sandra Anderson (to her right) and the cast of The Invisible Child.

At the Alberta Literary Awards last night, the play The Invisible Child received the Gwen Pharis Ringwood Award for outstanding play.  The play was written by David Cheoros, Lou Morin, and Leilani Muir (O’Malley), and was performed at last year’s Edmonton International Fringe Festival.  A special reading of the play was given at the Living Archives team meeting in October 2012, and footage of both performances features in the Alberta Eugenics Awareness Week highlights video, which will be released later this week.  Congratulations to the team that wrote and performed Invisible Child on this well-deserved honour! 

 

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

Forced Sterilization of Women and Girls with Disabilities in Australia: The WWDA submission

In November, I posted on the Australian Senate Inquiry into the forced sterilization of women and girls with disabilities.  Women With Disabilities Australia (WWDA) has just made its powerful, eye-opening submission to the Inquiry.  And there’s something you can do, pronto, that may make a difference here: endorse or support the submission.  Anyone who thinks that forced sterilization is a “thing of the past” shoudl read this submission.  First, from the submission (p.20),

There is a historical precedent in several countries including for example the USA (until the 1950s), in Canada and Sweden (until the 1970s), and Japan (until 1996) indicating that torture of women and girls with disabilities by sterilisation occurred on a collective scale – that is, mass forced sterilisation. This policy was rationalised by a pseudo-scientific theory called eugenics – the aim being the eradication of a wide range of social problems by preventing those with ‘physical, mental or social problems’ from reproducing.  Although eugenic policies have now been erased from legal statutes in most countries, vestiges still remain within some areas of the legal and medical establishments and within the attitudes of some sectors of the community:

Students Fight to Include Difficult History in California Schools

from Facing History; you might also want to check out their publication for schools on eugenics here:

March 8, 2013

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.

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

“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.