Adrienne Asch–RIP

by Rob Wilson. 

Many of us have been saddened today to learn of the death of prominent disability rights scholar and activist Adrienne Asch.  Some obituaries tributes have started to appear, and we will gather those we find in the coming days and add them to this one.  Please feel free to add your own in the comments to this post.

Adrienne was the Edward and Robin Milstein Professor of Bioethics, and Director of the Center for Ethics at Yeshiva University in New York.  She wrote on ethical issues in reproduction, death and dying, and justice for disadvantaged minorities in American society, and is perhaps best-known amongst philosophers for her powerful articulations of core arguments in the disability rights critique of the busy-as-usual practices utilizing prenatal diagnosis and testing.

Adrienne had been supportive of the What Sorts Network in its early days,

Alberta Eugenics Awareness Week (AEAW) 2013 ~ Oct 16 – Oct 22, 2013

Please join us in Edmonton at the University of Alberta for a series of events throughout Wednesday October 16 to Tuesday October 22, 2013 that mark:

Alberta Eugenics Awareness Week (AEAW) 2013 ~ Oct 16 – Oct 22, 2013

Wednesday Oct 16 – Rob Wilson, University of Alberta, Standpoint Eugenics.  Brown-bag lunch co-sponsored with the Dept. of Educational Policy Studies.  Noon-1:30pm, 7-102 Education North.

Thursday Oct 17 – Eugenics and Indigenous Perspectives.  Discussion panel co-sponsored with the Faculty of Native Studies.  Panelists: Tracy Bear, Joanne Faulkner, Jerry Kachur, Noon-1:00pm, 2-06 Pembina Hall.

Friday Oct 18 – 1) Persons’ Day Panel: Feminism, Motherhood and Eugenics: Historical Perspectives. Panelists: Wendy Kline, University of Cincinnati, Erika Dyck, University of Saskatchewan, and Molly Ladd-Taylor, York University. Noon – 1:00 pm, Henderson Hall, Rutherford South. Wheelchair accessible. 2) Wendy Kline, University of Cincinnati, “The Little Manual that Started a Revolution: How Midwifery Became a Hippie Practice”, 3:30 – 5.00pm, Assiniboia 2-02A, co-sponsored with the Departments of History and Classics, and Women’s and Gender Studies. 3) FIXED: The Science/Fiction of Human Enhancement. A documentary by Regan Brashear www.fixedthemovie.com, co-sponsored with the Faculty of Rehabilitation Medicine and the John Dossetor Health Ethics Centre. Telus Centre 150.  Doors at 6:30 pm, film at 7:00 pm. Q&A with Dr. Gregor Wolbring (who is featured in the film) following the film. Wheelchair accessible and closed captioned.

Saturday Oct 19 – Team Meeting, Living Archives on Eugenics in Western Canada.  2-02A Assiniboia Hall (9:00 am – 4:30 pm) Lunch provided; please RSVP to moyra@ualberta.ca by Noon Oct 16^th.

Monday Oct 21 – 1) Joanne Faulkner, University of New South Wales, The Politics of Childhood and Community Identity.  Noon – 1:00 pm in 7-152 Education North.  Co-sponsored by the Departments of Educational Policy Studies and Human Ecology.  2) World Premiere “Surviving Eugenics in the 21st Century: Our Stories Told” 7:00 pm – 9:15 pm Metro Cinema at the Garneau, 8712 – 109 Street NW, Edmonton. Trailer: http://youtu.be/QoM12GAJm8I; closed captioned and ASL interpretation; wheelchair access through the alley entrance.  Please sign up in advance at Facebook to help us with numbers!

Tuesday Oct 22 – 1) Joanne Faulkner, University of New South Wales, The Coming Postcolonial Community: Political Ontology of Aboriginal Childhood in Bringing Them Home.  4.00 – 5.30pm in Assiniboia 2-02a.  Co-sponsored with the Departments of Philosophy and Sociology.  2) Difference and Diversity: An Evening of Performances.  Featuring CRIPSiE (formerly iDance), a reading by Leilani Muir, the art work of Nick Supina III, and much more.  Education North 4-104. Doors at 6:30 pm, performances at 7:00 pm.  Please sign up in advance via Facebook to help us with numbers!

ASL Interpretation can be arranged for events, please contact moyra@ualberta.ca prior to the event.

All Events are FREE and OPEN TO THE PUBLIC!

All events are at the University of Alberta, Edmonton.

FIXED:The Science/Fiction of Human Enhancement

How do technologies that claim they will change our bodies and minds challenge our views of disability and normalcy? How might this affect what it means to be human in the twenty-first century?

These are the questions tackled in FIXED: The Science/Fiction of Human Enhancement. It’s a haunting, subtle, urgent documentary that takes a close look at the drive to be “better than human” and the radical technological innovations that some are advocating we embrace. Producer/director Regan Brashear has working on labor, race, youth, LGBTQ, and disability issues for over twenty years through documentary film, union organizing, community forums, and grassroots activism. She is co-founder of Making Change Media, which produces videos for non-profits and labor unions, as well as independent long-form documentaries such as FIXED.

Regan will be interviewed by Gina Maranto, Director of Ecosystem Science and Policy at the University of Miami’s Leonard and Jayne Abess Center, and author of Quest for Perfection: The Drive to Breed Better Human Beings.  Please join us on Thursday October 3 at 11 am PT/ Noon MST / 2 pm ET for Talking Biopolitics a live web-based interview and conversation with Regan Brashnear, Gina Maranto, and you.

Registration is required! You can register here: registration. You can read more about the film and Regan and Gina here

The Living Archives on Eugenics in Western Canada is hosting the Alberta Premiere of FIXED: The Science/Fiction of Human Enhancement with co-sponsors the Faculty of Rehabilitation Medicine and the John Dossetor Health Ethics Centre, University of Alberta, on Friday October 18, 2013 at the Telus Centre 150, University of Alberta. Doors at 6:30 pm, film at 7:00 pm. Dr. Gregor Wolbring will join us after the film for questions and answers via SKYPE. Admission is FREE and this event is open to the public! Plan to attend!

Meet the New Eugenics, Same as the Old Eugenics

From the Center for Genetics and Society blog, by Gina Maranto, Biopolitical Times guest editor, March 4, 2013

The unfortunate truth is that discredited ideas never do die, they just rise again in slightly altered forms—witness eugenics. Despite the horrors perpetuated in its name, including forced sterilization and the Holocaust, the eugenic impulse is with us still. One of the forms it takes is schemes for “improving” offspring through the selection and manipulation of embryos.

In the last year or so, one neo-eugenic advocate in particular has been garnering media attention. He’s Julian Savulescu, holder of an array of titles, including an endowed chair and directorship of a center at the University of Oxford funded by the Uehiro Foundation on Ethics and Education.

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

One Child, Three Biological Parents – End of Diseases?

Last week, The Telegraph announced that within three years, it will be possible to have three biological parents for any one embryo using in-vitro fertilization.  Why would anyone pursue such a technique?  To “eradicate hereditary disease.”  You can read the full artcle below:

http://www.telegraph.co.uk/science/science-news/9025121/Babies-with-three-parents-possible-within-three-years.html

This controversial method proposes that transferring a tiny fraction of DNA from a different donor than only the parents will result in a child without mitochondria-related diseases.  (Mitochondrial diseases are often severe and incurable, including muscular dystrophy and ataxia).  Researchers believe they can wipe out such diseases within a generation.  Children would also retain DNA from both their mother and their father.  The genetic implant of a third person is described as being “as minimal as changing the batteries in a camera.”

Researchers are also placing great emphasis on needing public support, before current laws (which would prevent such an operation) become changed.  Strong opposition comes from “groups who oppose embryo research and claim genetic engineering can result in serious defects.”

What is perhaps equally interesting to the article itself is the poll available on the website.  The Telegraph asks:

Conference Call for Papers: Human & Machine: Posthumanism in Technology, Culture, and the Arts

This might be of interest to some people:

The Ewha Trans-Humanities Research Team will host an international
conference on “Human & Machine: Posthumanism in Technology, Culture
and the Arts” from June 1st to 2nd, 2012 and invites suitable
contributions for presentation at the conference..

Genetic engineering and digital technology are more than just
supplement of human intellectual and physical ability; they seem to
bring fundamental changes to the nature of what it means to be human.
Such changes have been seen in how philosophy, literature, art,
technology and cultural discourse view the issue of individual and
group identities, the nature of human characteristics, the meaning of
life, the status of humans in nature and other relevant issues taken
from ethical and political perspectives. In this conference, the
subject of humans and technology, both of which are represented in the
debate on posthumanism, will be deeply discussed from a
multidisciplinary perspective focusing on the topics of: Human Body
Transformation in Science, Technology, and Art; Ethical Issues on
Human Enhancement; Representations of Posthumans in Popular Culture;
and Posthumanistic Impact on Human Ontology.

The conference poses the question as to whether or not technology has
influenced the perspective of being human and the nature of humanity
itself. The conference examine the aspects of the human body that have
been transformed through technology and their significance: How have
physical transformations through prostheses, implants, genetic
engineering, and organ transplants influenced human identity? How are
the ethical issues, that such transformations generate, demonstrated
in the arts? Given the phenomenon that human beings can reconstruct
themselves with machines as well as utilize machines, what is the
meaning of post-human embedded within the interaction between
human-like robots and human beings, or the combination of technology
and human-beings? These questions are to be discussed in the
conference.

Human enhancement and transformation technology, which cutting edge
technology will make possible, demand our serious consideration since
the diverse aspects of being human in the future rely on a variety of
ethical and political issues including the rationality and validity of
the application of such technologies. The conference endeavors to find
answers to the fundamental questions of how to define what is the norm
in the nature of being human, and what natural rights for human beings
are, followed by which values are to be respected in the era of
cutting edge technology.

Furthermore, the conference examines aspects of representations of
posthumans like human clones, androids, cyborgs and aliens which
depict new forms of human beings, through the image of the future
presented in popular culture such as SF movies, animations, SF novels,
music videos and TV commercials. And also, there will be a discussion
of public awareness on the notions of naturalness, otherness, class,
utopia and dystopia related with such popular culture.
As human beings attain the ability and skill to reconstruct their
bodies through substitution, the boundaries between the human body and
its image, the lines between what is artificial and what is natural,
and the distinctions between nature and culture disappear. This
phenomenon raises various ontological issues regarding the
relationships of the real body and the virtual body, life and
lifelessness, and the subject and its surroundings or ‘others’.
Posthumanism pursues, on one hand, a liberal and post-ideological
relativism, but on the other hand, it tends to combine with the
critical theories, materialism and feminism. How can individual
transhumans and posthumans be positioned in social systems and
relations? Indeed, do human beings have the freedom to choose a body
for themselves? If so, how and where can we apply our enhanced
abilities? To what extent can it be considered an individual matter or
a social and political matter? Through posing the issues and problems
on modern anthropocentricism, this conference reconsiders the human
ontology that is constantly changing and being reconstructed rather
than the one that is defined by identity in the nature of
transcendental property.

A tentative schedule of the conference is as follows:

June 1st
Session 1: Human Body Transformation in Science, Technology, and Art
Session 2: Ethical Issues on Human Enhancement
Roundtable Discussions: all speakers and discussants will participate in

June 2nd
Session 3: Representations of Posthumans in Popular Culture
Session 4: Posthumanistic Impact on Human Ontology
Roundtable Discussions: all speakers and discussants will participate in

Confirmed Speakers include Julian Savulescu (Oxford University), Dónal
O’Mathúna (Dublin City University), Michael Hauskeller (University of
Exeter), Thomas Philbeck (NYIT), Stefan Sorgner (Universität
Erlangen-Nürnberg),  and Jens Eder (Johannes Gutenberg University,
Mainz).

If you like to present a paper at the conference, please submit an
abstract of not more than 400 words by 29 February 2012 to Dr.
Eunryung Kim, e-mail: elysak@ewha.ac.kr.

Living Archives: Inaugural Events

The 5-year project, Living Archives on Eugenics in Western Canada will launch its public face with some inaugural events in Edmonton at the end of this week.  All events are free and open to the public, and we welcome community and university members, individuals and organizations.

We start on Friday 22nd October, 2010, with a keynote address by Professor Douglas Wahlsten at the Telus Centre on the campus of the University of Alberta, at 7pm, entitled “Eugenics in Alberta: Science and Politics”.  The talk is in Room 150, doors open at 6:30 and a reception will follow.

Events on Saturday October 23, 2010 take place on the lower floor of the Stanley Milner Library located opposite Churchill Square in Edmonton.  We will be downstairs in the Edmonton Room, with coffee and snacks available at 9.45am and the first session starting at 10.00am.  Members of the public are also welcome to attend a short meeting of the governing board, which will begin at 9.00am in the same location.  The Saturday events include:

• Dick Sobsey & Heidi Janz “Picturing Eugenics: Telling the Story of Eugenics Through Alternative Communication”
• Erika Dyck, “Building a People’s History of Eugenics: Archives Past and Present”
• Gregor Wolbring, “Dynamics Around Eugenic Acceptance and Rejection: Lesson for the Future”
• Claudia Malacrida, “Creating an Oral History of Eugenics Questions of Scope, Ethics and Access”

To register for the free lunch or request disability accommodations, please contact moyra@ualberta.ca or register directly at http://www.whatsorts.net/register/.  You can also get updated information at http://www.whatsorts.net

Parenting, testing, disability, autism

In a recent comment on an older post of Kristina Chew’s, “Eugenics, Fear, and Pain” over at Change.org, one parent says:

I found out three days ago both of my children are positive for the PTEN mutation. There is a link between PTEN and autism. I think it’s that one in every 5 people with the mutation have autism–very strong odds. I opted for genetic testing with my son. The triple screen came back very abnormal. He had 1:6 odds of Down Syndrome. I opted out of an amnio. I’m glad I did because he did not have Down’s and I’m unsure they could have told me if he had the PTEN mutation. Since only 1 in 250,000 people have this mutation I highly doubt he would have been checked for it. I didn’t know I had the mutation until 2007 even though I had every sign there is–just no name. We did not do genetic testing with our daughter. I guess the point of this is sometimes problems exist that aren’t detected. No one is guaranteed what society sees as a “perfect” child. My daughter was placed on the PDD spectrum before her second birthday. We didn’t understand the link at the time as this was around the same time as my PTEN diagnosis. She’s so beautiful and smart. The only problem is reaching her through language sometimes but intervention is changing that. Last night she was speaking to me quickly as she does and I didn’t understand her. I slowed her down and BOOM there was meaning. It’s frustrating for her in not being able to get her point across easily but she’s making great strides.

I just cannot fathom anyone not thinking my child’s life is worth it. As someone who has been through 24 operations and 3 diagnoses of cancer by age 30, my quality of life hasn’t been the greatest. My own father once said if he had known what I would go through he wouldn’t be sure he and mom would have had me. I cannot begin to explain how painful that was.

New stuff on What Sorts website

Thanks to the work of John Simpson, the What Sorts Network website now has a new look, and lots of new content.  Of special note are the links to our past events, linking to captioned and often transcripted video footage from events we have sponsored over the past three years, the description of the Community-Research Alliance (CURA) project, Living Archives on Eugenics in Western Canada, whose funding is pending, and a friendlier introduction to the What Sorts blog, including direct links to about 20 popular and favoured named posts from the past 18 months. 

Modern Pursuit: Discussion

The final captioned videos from The Modern Pursuit of Human Perfection: questions from audience members, and responses from the panel. Questions from Rob Wilson, Michael Shaw, Anna Macquarrie, and Bruce Uditsky on vulnerability and trust in medicine, the disconnect with disability in medicine, ways in which parenthood is denied in contemporary society, the absence of true choice in many medical situations, and the systematic devaluation of people with disabilities are all discussed. And all with closed captioning. Enjoy

Connecting with others

Vulnerability, trust, and confrontation

Good people in medicine and the disconnect

The denial of parenthood and selective abortion

Going underground and true choice

Disability, individual autonomy, and systematic devaluation

For the full story, see this previous post.

Vehmas and Sobsey commentaries: now captioned

Below are the short commentaries–now closed captioned–delivered by Professors Simo Vehmas and Dick Sobsey as part of a panel discussion on the theme The Modern Pursuit of Human Perfection: Defining Who is Worthy of  Life.

Bioethical Reflections on Disability, Medicine, and Family Life (Simo Vehmas)

Decisions and Dishonesty in Medicine (Dick Sobsey)

Simo is one of Finland’s leading bioethicists who joined us for the panel discussion, while Dick is one of the world’s authorities on violence and disability and runs the ICAD blog.  The short panel presentations that are the basis for these commentaries–by Wendy Macdonald, Sam Sansalone, and Colleen Campbell–can be heard and viewed (now that they are also closed captioned)–in this post, which also contains more information about the event as a whole.  These should be useful to some of you for teaching, for community discussion, or just for private reflection on the ways in which eugenic or newgenic thinking can be found immersed in ongoing medical practices and cultures surrounding the treatment of people with disabilities.

Next up: the audience-panel interactions, which I’ll post in the next week.

Modern Pursuit of Human Perfection talks: now captioned

In October 2008, the What Sorts Network and the “From Archives to Activism” project in that network cosponsored a public dialogue, The Modern Pursuit of Human Perfection, with three of our community partners: the Alberta Association for Community Living, the Canadian Association for Community Living, and Neighborhood Bridges. The event was held at the University of Alberta on October 23rd, 2008, and was open to the public and filmed. It formed part of a series of public events we put on that continued on Friday and Saturday, including an invited symposium at the Western Canadian Philosophical Association on Philosophy, Eugenics, and Disability in Alberta and Places North that kicked off with this talk from Dick Sobsey, director of the John Dossetor Health Ethics Centre at the University of Alberta and a leading authority on violence and disability. (We’re still in the process of moving from transcripts to captioning for these talks.)

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 with medicine, disability, and social services, and was rounded out by a series of interchanges between audience and panel. All videos now contain both transcripts and closed captioning (thanks to Jackie Ostrem for completing the work needed here), and the videos are also available directly on YouTube. Since the closed captioning has just been added, and will make the videos here more accessible for classroom and community use, we’re running them again on the blog in three or four chunks, the first of which is below and contains all of the short narrative stories at the core of the dialogue. 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. Each video is cut to “Youtube size”, i.e., less than roughly 10 minutes, which, apart from fitting the attention span of the Youtube generation, also packages the discussions here more aptly for classroom 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; to John Simpson for organizational assistance; and to Jackie Ostrem for the transcriptions and captioning.

Introduction (Anna Macquarrie and Bruce Uditsky)

My doctor, my child (Wendy Macdonald)

Living with trisomy 13, part I (Sam Sansalone)

Living with trisomy 13, part II (Sam Sansalone)

When disability meets social welfare (Colleen Campbell)

Chromosomal microarray analysis, newgenics, and Annie Farlow

A recent news item in the Canadian Medical Association Journal by Roger Collier, Prenatal DNA test raises both hope and worries, discusses the relatively new prenatal diagnostic technique of chromosomal microarray analysis, contextualized by the case of Annie Farlow, which we have discussed in the posts What Sort of Death for Annie? and Deathmaking by medical neglect. Some think that Annie’s fate was sealed by her diagnosis of trisomy 13, not so much because of the nature of the condition itself but because of the downstream effects that labeling had on the medical treatment she received (or not). As the article says,

In August 2005, Annie, not yet 3 months old, suffered a respiratory attack and was admitted to hospital. She died within 24 hours. The official cause was “complications of trisomy 13,” but Farlow and her husband still don’t know the details, despite years of inquiry. They do know, however, that someone issued a do-not-resuscitate order without their consent. “I feel that the genetic testing ultimately determined her fate,” says Farlow, who lives in Mississauga, Ontario. “She was treated as a syndrome. She wasn’t treated as a child.”

Int J of Disability, Community and Rehabilitation Special Issue on Nanotechnology, Disability, Community and Rehabilitation

New in the Int J of Disability, Community and Rehabilitation (IJDCR)

The issue can be found here

An IJDCR Special Issue on Nanotechnology, Disability, Community and Rehabilitation edited by Gregor Wolbring,
Community Rehabilitation and Disability Studies Program, Dept of Community
Health Sciences, University of Calgary, Canada

Articles:

Editor’s Introduction to the Special Issue, by Gregor Wolbring

If Nanotechnology Were a Magic Wand What Obligations Would it Bring? Or:
The Right to Enhance Versus the Right to Morphological Freedom, by Heather
Bradshaw

Optimization of Human Capacities and the Representation of the Nanoscale
Body, by Michele Robitaille

Nanotechnology: Changing the Disability Paradigm, by Laura Cabrera

The journal welcomes submissions on a continuous basis that focus on nanoscale and nanoscale-enabled science and technology as it impacts on disabled people and the broader community and the role of rehabilitation professionals, family members and others.

The Modern Pursuit of Human Perfection: The Full Story

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.

Introduction

My doctor, my child

Living with trisomy 13, part I

Living with trisomy 13, part II

When disability meets social welfare

Bioethical reflections on disability, medicine, and family life

Decisions and dishonesty in medicine

Connecting with others

Vulnerability, trust, and confrontation

Good people in medicine and the disconnect

The denial of parenthood and selective abortion

Going underground and true choice

Disability, individual autonomy, and systematic devaluation

Disability, Individual Autonomy, and Systematic Devaluation

[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.

Going Underground and True Choice

[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.

The Denial of Parenthood and Selective Abortion

[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.

Good people in medicine and the disconnect

[This is the tenth 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.]

Here Michael Shaw draws on his dual experience as a child in a medical family and as a parent of a child with Down Syndrome, and as a parent advocate working with the Canadian Down Syndrome Society to ask a question about how doctors and others often fail to connect with the concerns of parents of children with disabilities. The video is in two parts; Part 2 beneath the fold, with transcripts for both videos there (thanks to Jackie Ostrem!). A response from Dick in Part 1, and responses from Sam and Wendy in Part 2. If you have trouble listening to or viewing the videos here, you can also listen to or view them directly at Youtube: Part 1 and Part 2.