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.  Continue reading

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)

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.

Continue reading

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. Continue reading

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. Continue reading

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.

Continue reading

Vulnerability, trust, and confrontation

[This is the ninth 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; Part 1, containing the video clip, was just posted.]

Here is Part 2 of the response to the question about vulnerability, trust, and confrontation. Sam talks about the variation in responses he has experienced from both bioethicists and doctors, and links some of these responses to a continuation of eugenics by other means. Colleen supports this, and brings us back to reactions from one’s own family. Transcript below the video. Continue reading

Connecting with others and more from Colleen

[This is the eighth 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. This series will bring forward the videos made of this event twice a week, roughly every Wednesday and Saturday. 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 we move onto the “dialogue” part of the public dialogue, with the first of a series of questions raised by the stories we’ve heard from Sam, Wendy, and Colleen. We start with questions about connecting with others and what happens when doctors and others are confronted by vulnerable people whose trust has been violated by those in a position of authority. This one is in two parts, with discussion of child welfare, parental struggle, and connecting with others coming through in this part, adding an important part to Colleen’s story that was left out first time round coming out in Part 1 below. A transcript follows the video. Continue reading

Decisions and Dishonesty in Medicine

[This is the seventh 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. This series will bring forward the videos made of this event twice a week, roughly every Wednesday and Saturday–this one, since it’s brief, is a freebie! 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 Dick Sobsey gives some brief reflections on the panel presentations from Wendy, Sam, and Colleen that focus on parental autonomy, decision-making, and medical guidance. Parents believe that they have the right to make decisions about their present and future children, and that they do in fact have that right is part of the medical norm, as Simo Vehmas noted in his recent reflections here. But are they in fact given a real choice here? The stories we’ve heard so far, suggest some of the constraints on these choices. Maybe some of you have other stories or opinions to share? A transcript of the video follows the cut. Continue reading

Bioethical reflections on disability, medicine, and family life

[This is the sixth 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. This series will bring forward the videos made of this event twice a week, roughly every Wednesday and Saturday. 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.]

In the clip that follows, we make the transition from the personal stories of Wendy, Sam, and Colleen that have featured in previous posts in the series, to the reflections of Simo Vehmas that marked the beginning of a segue to discussion of those stories. Simo is a leading philosopher of disability from Finland who was able to join us for a few days, and here he offers some bioethical reflections on disability, medicine, and family life in light of those stories. Respect for parental choice is an important guiding principle for bioethicists, though each of the stories from Wendy, Sam, and Colleen question how well medical practice follows that principle. But there is another aspect to parental choice–the choice not a parent a child with a disability–that comes up in Simo’s comments–that raises other questions, as we’ve seen in several posts in the Thinking in Action series, such as this one on Singer on parental choice and Ashley X, and this one on Adrienne Asch vs Jeff McMahan on the “ethics of exclusion”.

In the next post, which will introduce Dick Sobsey‘s reflections, we’ll see this issue taken up again, and in the discussion posts to follow thereafter in the series, it becomes more hotly debated. But if you want to jump start further debate right now, feel free. Video and transcript beneath the fold. Continue reading

When Disability Meets Social Welfare

[This is the fifth 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. This series will bring forward the videos made of this event twice a week, roughly every Wednesday and Saturday. 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 Colleen Campbell and Anne Hughson tell the story of how Colleen’s daughter was taken away from her for over 4 years, and Colleen’s subsequent struggle to get her back. The story is all too common, not only in Edmonton, but in many places, and raises issues of disability, good mothering, and the social welfare system, and the relationship between them. Why is Colleen considered such a “bad parent” by child services that her child would be taken away from her for what was then 1/3 of her daughter’s life? Shouldn’t social services be working to keep struggling families together, rather than pulling them apart? Wendy and Sam, who featured in the preceding posts in this series, were “normal parents” fighting for their children; here Colleen faces the struggle to prove herself as a competent parent. One question that Anne asks that doesn’t get answered is whether there was a complaint against Colleen, something that we’ll see addressed in the question period (which we’ll post down the track). There we’ll also learn more about what Colleen was working as during this time, which also makes some of the preceding questions more pressing. View the clip!; transcript beneath the fold. Continue reading

Living with Trisomy 13, Part 2: The Monitor

[This is the fourth 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. It is also the second part of a description of events given by Sam Sansalone. The first part can be found here. 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. This series will bring forward the videos made of this event twice a week, roughly every Wednesday and Saturday. 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.]

In this video (followed by a transcript) Sam Sansalone continues to describe his experiences trying to keep his daughter, Katya, alive. This part of the story is focused around a monitor necessary to keep Katya alive. The hospital staff clearly recognize that this piece of equipment is needed but seem somewhat reluctant to allow Katya to use the monitor, possibly even arranging a situation where a less medically savvy couple than Sam and his wife would choose to give up the monitor without realizing the consequences (ie. their child quietly choking to death while they slept). Fortunately, the missing monitor is caught and Katya is able to continue living.

As far as we know Katya is the oldest surviving child in Canada to have received a Trisomy 13 diagnosis and Sam closes by sharing his thoughts about why this may be the case.

Watch the video and answer the accompanying poll: Continue reading

Living with Trisomy 13, Part 1: Stereotype Propagation and the Illusion of Choice

[This is the third 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. This series will bring forward the videos made of this event twice a week, roughly every Wednesday and Saturday. 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.]

In the following video clip (with transcript) Sam Sansalone begins to share his experiences fighting to save his daughter, Katya, who was born with Full Trisomy 13 (a condition where the child has an extra chromosome 13, for more information see www.livingwithtrisomy13.org). I think you will find this story interesting for two points that Sam shares. First, there is the issue of medical personnel intentionally withholding information about the quality of life that children with Trisomy 13 can expect; an act of deliberately propagating a stereotype. The exact reason for sharing this behaviour is unclear but it is likely at best a form of misplaced paternalism and at worst a set-up for point two.

Point two is Sam’s experience with the illusion of choice that can so often exist in our society, whether inside the medical community or not. In such situations people are initially presented with the opportunity to make their own choice about a difficult decision (and typically information to sway them to a particular side, the tie-in to point one). If the choice falls inline with what is expected then all is well, there may be a few tears and some whispered “I know it’s hard, but you’ve done the right thing”s, but life goes on. BUT if the choice falls outside of what is expected, then you are clearly not in your right mind, your response is rejected, and authority for the decision is assumed by whomever gave you the illusion of choice in the first place.

When the bioethics community steps in Continue reading

My doctor, my child: The response of the medical community to a mother who chooses to have a child who might be born with a disability

[This is the second post in a series highlighting a public dialogue heald 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. This series will bring forward the videos made of this event twice a week, roughly every Wednesday and Saturday. For further context, please see the introductory post in the series, which can be found here.]

The story you are about to hear you may find surprising in a number of ways; I know that I certainly did when I heard it on the night it was recorded. The contrast between the adversity faced by Wendy MacDonald and her family from the medical community upon making the decision to keep her baby early in the pregnancy and the support they received once it was finally time for Kyle to be delivered struck me as a very unfortunate demonstration of the power of linguistic framing. The shift in language from “miscarriage” to “premature birth” is a small one (the addition of one word, one syllable, and three letters), but it made all the difference for this family and the ability of the medical personnel involved to support them. I also found the adamant stance of her family doctor a bit perplexing, the sort of chilling paternalism that so often arises out of a misplaced belief that we alone have access to the knowledge of what is best for others. Perhaps even more than this I was surprised that this story had, and continues to have, a happy ending. For every Wendy MacDonald I am sure that there are many, many women who would be mothers and men who would be fathers that are bullied into conforming with the system because the system “knows best.”

Perhaps this video will make you a little angry, but it should also give you a little hope. Enjoy. Transcript of the clip beneath the fold. Continue reading

The Modern Pursuit of Human Perfection

On October 23rd last year, the What Sorts Network, in conjunction with the Canadian Association for Community Living and the Alberta Association for Community Living, sponsored a public dialogue at the University of Alberta called

The Modern Pursuit of Human Perfection
Defining Who is Worthy of Life

The event began with a panel of people who talked about their experiences with children, doctors, families, and disability. There were then several short commentaries, followed by some open discussion. The event was free and open to the public, and we have videocasts of all parts of the event to share.

Over the next month or so, we will put the videos of the public dialogue up on the What Sorts blog; each runs for 5-10 minutes or so. Today Continue reading