On October 25, 2008, the What Sorts Network hosted a public symposium to examine, well, philosophy, eugenics, and disability in Alberta and places north. Four speakers were featured on the panel, Dick Sobsey, Simo Vehmas, Martin Tweedale, and Rob Wilson. This event was video recorded and over the next month we will highlight these videos on this blog. Videos will be featured on average twice a week, roughly every Saturday and Wednesday.
To download the full description of the symposium please click here.
We begin this series with the first two parts of the presentation by Dick Sobsey titled “Varieties of Eugenics Experience in the 21st Century.” This presentation amounts to a summary of various kinds of eugenic motivations, justifications, and practices from the 19th century to today with a good collection of anecdotes and trivia. A transcript of both parts follows the fold.
Highlights from part 1 include: shift from religious to scientific view of the world; quality of life; social Darwinism vs. biological capitalism.
BBC Children’s TV has a show for preschoolers called CBeebies. The show includes a lot of interesting animated, puppetry, and other fictional characters as well as human presenters… Alex, and Cerrie. Cerrie, however, has become the target of serious public campaign that claims she is frightening children.
About a month ago Spirit of the Time posted a piece on Whatsorts by Cindy de Bruijn called ‘Does Alberta’s “Minimum Wage Exemption” violate the Canadian Charter of Rights and Freedoms?’ Now an incredible news story from Iowa provides a chilling example of just how far wrong such an exemption can go. It starts with 21 Texas men who were described as mentally disabled and receiving SSI (US Supplemental Security Income that the government describes as”designed to help aged, blind, and disabled people, who have little or no income”) income from the government.
Below are all 13 posts from our Modern Pursuit series of posts, deriving from the public dialogue that we cosponsored with the AACL and the CACL at the University of Alberta in October 2008. The public dialogue began with some opening comments from our cosponsors, continued with short presentations from our community member panelists talking of their personal experiences, and was rounded out by a series of interchanges between audience and panel. All videos now contain transcripts (thanks to Jackie Ostrem for completing the work needed here: update 21 June, 2009: all now are closed captioned, thanks again Jackie!), and the videos are also available on YouTube. Comments on the blog on any of these posts is still welcome, but we also hope that you’ll find these of interest and use down the track for individual reflection or group discussion.
Thanks to all participants: Anna Macquarrie, Bruce Uditsky, Dick Sobsey, Wendy Macdonald, Sam Sansalone, Colleen Campbell, Anne Hughson, and Simo Vehmas. And thanks to Grant Wang and Lee Ramsdell at the Arts Resource Centre at the University of Alberta for the filming and post-production work, and John Simpson for organizational assistance.
The Brasilian program
World Down Syndrome Day (WDSD) was proposed by Down Syndrome International
as March 21 because the date is written 21/ or 3/21, in allusion of 21st
chromosome trisomy that provokes Down syndrome.
The first celebration was held in 2006 and this year it coincides with the
50th anniversary of Discovery of the trisomy by Dr Jerome Lejeune.
INCLUSION TO AUTONOMY is the summing up of what we work for, expect and owe
to our sons, daughter and relatives with Down syndrome. One year after
Brazil ratified the UN Convention on the Rights of Persons with Disability,
we reassure the right to full social inclusion to all people. Inclusion
that is guaranteed by law in Brazil and should be respected and fulfilled by
governments and by all sectors of society. Continue reading →
Not too long ago, I attended a talk on medical ethics. The speaker was presenting a number of test cases for discussion. One of the test cases imagined a 32-year-old woman who had an accident that left her with quadriplegia and requiring ventilator assistance. 10 weeks after her injury, she asks her doctor to disconnect the ventilator. The speaker argued that the doctor should respect the patient’s right to self-determination and disconnect the ventilator. There was no subtlety expressed by the speaker about whether 10 weeks was long enough for the person to know what her life could be like after disability. There was no awareness expressed about objections to these sorts of right-to-die cases that have been expressed in the disability literature. There seemed to be no awareness about worries that have been discussed in medical ethics since at least the 1980′s that people who become dependent after such accidents may express a wish to die as a response to concerns about being a “burden,” and to the larger society’s implications that it wishes to be “rid” of such “burdens.” In other words, whose desires are people in such situations who say they wish to die really carrying out: their own “autonomous” desires, or the larger society’s desires to be “rid” of them? Such questions should give us pause as to whether people in such circumstances are really making autonomous decisions and engaging in self-determination when they ask people to help them die.
In a discussion afterword that was somewhat critical of the speaker’s position, Continue reading →
[This is the thirteenth post in a series highlighting a public dialogue held at the University of Alberta on October 23rd, 2008, titled The Modern Pursuit of Human Perfection: Defining Who is Worthy of Life. The dialogue was sponsored by the What Sorts Network, in conjunction with the Canadian Association for Community Living and the Alberta Association for Community Living. For further context, please see the introductory post in the series, which can be found here; we'll string together all posts in this series when we have most / all of them up, or you can search by the category "Modern Pursuit" to get those already posted.]
At last, the final question and exchange, another one from Bruce Uditsky, with subsequent lively exchange, that follows on from the preceding pair of questions. Transcript below the fold.
This Arabic rap, “Difference is Normal” was shot in Lebanon, Qatar, and Syria. Like the What-Sorts website it explores issues of human variation, particularly disability, but it does so through the haunting medium of Rap Music. It includes subtitles and there is a little sign language, but I don’t know which sign language it is. The particular version used in this music video was modified after the recent war in Lebanon and partly addresses the difficult issue of violence induced disabilities that result from war. That is how does society respect and treat the victims as individuals at the same time that we are trying to make martyrs and fuel outrage toward the other side. Continue reading →
Some of you may know this already, so apologies for cross-posting. Liz Crow, a British filmmaker, has been engaged in putting together a commemorative and interactive installation chronicling Aktion Tiergartenstrasse 4, an extermination plan enacted in 1939 by the Nazi’s with the goal of eliminating people with disabilities from a society that sought Aryan perfection. Aktion T4 became the ‘successful’ blueprint for extermination camps with a broader mandate as the war progressed. In this clip–which is captioned in English, with spoken English as well–Liz Crow outlines the project and the film she’s working on.
[This is the twelfth post in a series highlighting a public dialogue held at the University of Alberta on October 23rd, 2008, titled The Modern Pursuit of Human Perfection: Defining Who is Worthy of Life. The dialogue was sponsored by the What Sorts Network, in conjunction with the Canadian Association for Community Living and the Alberta Association for Community Living. For further context, please see the introductory post in the series, which can be found here; we'll string together all posts in this series when we have most / all of them up, or you can search by the category "Modern Pursuit" to get those already posted.]
Here Anna Macquarrie from the CACL talks more openly about the history of eugenics and contemporary genetic testing. In Part 2, below the fold, there is some discussion of this, with Simo Vehmas resisting the linkage of eugenics with contemporary attitudes and practices, and some hearty discussion following from all–not everything can be heard here, but we’ve put what we could make out on the transcripts beneath the fold.
Is making the connection between past eugenic practices and contemporary practices, such as genetic testing for Down Syndrome, “playing the Nazi card”, as Simo suggests?
Going Underground and True Choice: Part 1
Note that there is no sound in the first 30-40 seconds of Part 1, which simply contains the title of the clip, the name of the speaker(s), and the location of the symposium, information that is provided in the beginning of this post. Continue reading →
This is a video featuring twenty-six year old Nick Vujicic who was born without arms or legs. He is a young Australian man who has found strength through his faith and is inspiring many people through his motivational speaking. More information on his life and work can be found at lifewithoutlimbs.org.
More videos of Nick and some of his talks can be found on YouTube. Seeing him navigate through some of his daily routine gives interesting insight into what many able bodied persons may take for granted. It was especially thought provoking to see him jump into a pool and swim! See here.
[This is the eleventh post in a series highlighting a public dialogue held at the University of Alberta on October 23rd, 2008, titled The Modern Pursuit of Human Perfection: Defining Who is Worthy of Life. The dialogue was sponsored by the What Sorts Network, in conjunction with the Canadian Association for Community Living and the Alberta Association for Community Living. For further context, please see the introductory post in the series, which can be found here; we'll string together all posts in this series when we have most / all of them up, or you can search by the category "Modern Pursuit" to get those already posted.]
Here is Bruce Uditsky, executive director of the Alberta Association for Community Living, on the hurt that people with developmental disabilities feel on being denied the right to parent, and on the kinds of choices that we allow in our society. The latter comments here reply to some of what Simo Vehmas said in his panel presentation, shown as “Bioethical reflections on disability, medicine, and family life” earlier in this series, and Simo makes a further reply, in turn, here. A transcript follows the video.Continue reading →
Concert accessible to the deaf in Toronto. Interesting stuff that I had never thought about. Make sure to check out the comments as well. As someone points out, this is not exactly new news, but it will be to many, which helps account for its importance.
Randall Gordon, a character from Paul Chadwick's Concrete series, points his finger at YOU, a la Uncle Sam, with the following speech bubble: "I'm completely serious, and I repeat my appeal. You, out there. Somewhere. Sexually transmitted; no undue harm; infertility. Go save the world."
And so a tale already fraught with controversy unleashes an ethical bombshell… Continue reading →
First session of the Committee on the Rights of Persons with Disabilities (23 – 27 February 2009) Conference Room AH
Palais des Nations, Geneva, Switzerland
The Committee on the Rights of Persons with Disabilities (CRPD) is the body of independent experts which monitors implementation of the Convention by the States Parties.
All States parties are obliged to submit regular reports to the Committee on how the rights are being implemented. States must report initially within two years of accepting the Convention and thereafter every four years. The Committee examines each report and shall make such suggestions and general recommendations on the report as it may consider appropriate and shall forward these to the State Party concerned.
The Optional Protocol to the Convention gives the Committee competence to examine individual complaints with regard to alleged violations of the Convention by States parties to the Protocol.
The Committee shall meet in Geneva and normally hold two sessions per year.
Our Thinking in Action series combined podcasts from a the talks held at the Cognitive Disability conference in NYC in September 2008 with reflective comments from notable academics, philosophers, and people with personal investment or experience with the topics at hand. The series has now come to an end, but the blog posts remain and discussions are still taking place. If you are just learning about this series for the first time don’t worry about searching through all the posts on our blog to try and find the relevant ones, they are all collected here, in reverse chronological order. Or you can get them all strung together simply by using “Thinking in Action” in the pull down menu under “Categories” in the left-hand scroll bar. Thanks to our bloggers Julie Maybee, Ron Amundson, Angie, Marc Workman, Miss Cato, Dick Sobsey, and Spirit of our Time! Continue reading →