Scope of Eugenics – Call for Submission – extended until March 1, 2015

The Scope of Eugenics
Call for Submissions

Eugenics Archives (eugenicsarchive.ca) is pleased to announce a four-day workshop at the Banff Centre, May 22nd-25th, 2015, in Banff, Alberta. To acknowledge the significant contributions made by students to the Living Archives on Eugenics in Western Canada project over the past four years, we invite submissions from early career scholars—students and those within three years of completing their doctorates—from any discipline on topics related to eugenics and its contemporary significance.

Submissions should consist of a single document that includes a (i) summary abstract (<150 words), (ii) longer description (<750 words) outlining the presentation and explaining the relevance of the topic to eugenics, (iii) short biographical statement (<100 words), and (iv) CV. Possible topics include, but are in no way restricted to, the following :

Apologies to eugenics survivors Child welfare
Collective memory Human diversity
Nationalism Quality of life
Queer sexuality Roma peoples
Schizophrenia World Health Organization
Whiteness Particular Countries / Geographic Regions

The project director is happy to provide feedback to potential participants on these and other suggestions (e.g., on particular countries or regions of the world). Participants are expected to attend the whole workshop and to contribute a short article to eugenicsarchive.ca, ideally based on their presentation, within one month of the workshop. Articles accessible via the Encyc or Around the World modules at the site indicate the type of article we have in mind.

Accommodation and meals for all workshop participants will be covered by Eugenics Archives. Participants will also be notified upon acceptance if we are able to cover in full, or contribute to in part, additional travel expenses. The workshop will allow for substantial opportunities to enjoy the Banff surrounds and will encourage networking, mentoring, and informal discussion between junior scholars interested in eugenics and Eugenics Archives team members.

Scope of Eugenics Poster with Mountains
Deadline for submissions : February 15th, 2015 EXTENDED to March 1, 2015 Acceptances : March 15th, 2015

Questions and submissions to the project director, Professor Rob Wilson : scopeofeugenics@gmail.com

Website: https://scopeofeugenics.wordpress.com/

Hosted by the Living Archives on Eugenics in Western Canada

Out from Under: Now a New Home

Great news that the awesome exhibit, Out From Under, will now be a permanent feature of the New Canadian Museum for Human Rights.  I visited the exhibit with the curators in 2008 at the ROM in Toronto, and it was a great experience.  Congratulations, Catherine, Melanie, and Kathryn.

Canada as a model for sterilization compensation

Douglas Wahlsten has emailed to inform us of a publication in the Winston-Salem Journal on the story of Leilani Muir: the court battle (and victory) over wrongful sterilization, compensation, and the numerous cases that followed. Wahlsten explores these as a potential model to be used in cases of sterilization compensation in the United States, while also noting the recent promotion of the Canadian Eugenics’ past with the CURA funded Living Archives Project and the NFB documentary on the Leilani Muir case.

The award for sterilization followed existing rules in Alberta about an upper limit of damages for loss of the ability to have children from injury. Other jurisdictions may have another limit or even no limit at all. Consider the recent case of Evans vs Lorillard, where a man was awarded $152 million because the tobacco giant gave cigarettes to his mother when she was a child, and she became addicted and eventually died of lung cancer.

What would be the award if a woman lost her ability to have children because of a mistake during surgery or an auto accident? It seems this would be a reasonable standard for an award to victims of eugenic sterilization. To give them less implies they do not deserve the same respect as other people. Surely the amount should exceed the $20,000 proposed for victims of eugenics in North Carolina, because having children is a precious thing.

You can find the article here. 

Inclusive Post-Secondary Education

Alberta is a Province of contrasts. While Alberta’s role in sterilizing people with Developmental Disabilities as late as the 70s is infamous, Alberta also deserves kudos to for providing the world’s first inclusive post-secondary education program for people with developmental disabilities in the 1980s, and the On Campus program continues today, 23 years later at the University of Alberta. Alberta now boasts inclusive post-secondary education programs at 17 colleges and Universities across the Province and maintains an international leadership role in the field. Unfortunately, these programs sit precariously on the chopping block today as Alberta faces financial difficulties.

“The Ashley Treatment” has been done to a dozen of children, Ashley’s father says, but who sent the email to him?

In his third anniversary update of January 13, Ashley’s father writes “About dozen parents all over the world who are successful at providing the treatment to their Pillow Angels (boys and girls) are in contact with us.” He also mentions an email from “an attending doctor of a panel on Growth Attenuation at the pediatric conference held in Hawaii in May 2008” that says “when we asked for a show of hands, about half of the room said they had been approached by a family seeking growth attenuation, and about a dozen raised their hands when asked if they had offered it to a family.”

Claire wrote a great post here about this shocking revelation, pointing out that the growth attenuation is being justified for children with far lighter disabilities than Ashley’s for caregivers’ convenience. I appreciate what she has been writing on this issue. I agree with her 100% and share her sorrow at this new information.

Here, I would like to raise a question. Who is “ an attending doctor” who sent the email and reported to Ashley’s father about how the conference had gone?

The American Academy of Pediatrics had an annual meeting in Hawaii May 3-6, 2008. I found the program of May 4 here. The program 4195 titled “The Pillow Baby: Growth and Puberty Attenuation in Children with Profound Developmental Disability” seems to be the panel mentioned by Ashley’s father.

What Sorts course

I’ll be teaching a fairly large, mixed grad / undergrad seminar this coming semester as an ethics course with the working title that coincides with the blog: what sorts of people should there be?. Below is an initial draft of the core part of the syllabus. Feedback and suggestions welcome. One feature of the course will be to integrate some of the posts, videos, and commentaries from the What Sorts blog, using them as a basis for further discussion and readings.  If any of you are also making use of some of the resources here or at www.whatsorts.net, let me know by reply here or privately.

Phil 450 / 550
Topics in Ethics
What sorts of people should there be?

Themes, readings, etc.

Course guide description:

This course will be organized around the question “What sorts of people should there be?” and will focus on philosophical issues that arise in several areas at the interface of ethics, science, and technology. Topics that I would imagine covering including most, if not all, of the following: autonomy and personal choice concerning one’s appearance, health, and well-being; choices and responsibilities for one’s own possible and actual children; social policies and common practices regarding future generations, including genetic testing and screening; philosophical and medical views of disability and disablement; bioenhancement and transhumanism; the moral value of human and non-human lives; the nature of persons and the philosophical focus on questions about persons.

The Ashley Treatment: From the Beginning

Anyone interested, even vaguely, in what all the fuss is about on the Ashley X case, or who wants a review of the facts of the case, might make a start at a new website:

http://www.ashleytreatment.info/

Thanks to the work of Huahima over at Mysteries and Questions Surrounding the Ashley X Case, this case has not simply slipped into the annals of things that doctors and hospitals can get away with.

The development of this case continues to be ominous and scary. Anyone with a serious interest in disability, human rights, and medical interventions, should tune in. For the previous 18 What Sorts posts on the case, either search the blog via the category Ashley X or simply click right here.

DisRespect Radio Broadcast: Barb Farlow and Rob Wilson

Many of you have likely been following the case of Annie Farlow (Here is a listing of all our Annie Farlow posts) and were looking forward to listening to yesterday’s radio interview of Barb Farlow and Rob Wilson by Geoff Langhorne. If you are unfamiliar with the case then this interview should provide a succinct introduction to the details of the case in an accessible form. The one thing perhaps unclear in the interview is that Annie was NOT a newborn, but 80 days old, and went in to the hospital 24 hours before her unexpected death.  You can also get more from the recently-formed Justice for Annie Facebook group, which you’re welcome to join (it’s an open group), and the Annie Farlow website linked there.

The interview was broadcast on the CFMU (McMaster Unversity Radio) program DisRespect (Here is a little about the show and the program’s host) and is available for listening/download by doing the following:

1. Go to the CFMU website (http://cfmu.msumcmaster.ca/)
2. Click the button near the top left side of the screen that says “PROGRAMMING”
3. Click on “DisRespect” in the programming grid that appears; you’ll find it at 12pm in the Thursday column
4. A pop-up window will appear. In the left column, just click “14.05.2009” and the program will start playing. (If it doesn’t, you should be prompted to download some free software that takes less than a minute to download.) DisRespect starts a couple of minutes into the broadcast.
5. If you would like to downoad the program to your own computer (useful for skipping past the intro and the compulsory musical interludes) then just click “14.05.2009” and once the program starts playing there will be a new box in the bottom of the pop-up window with a download link that you can simply click (Note that the file is 60MB).

An unofficial transcript of the broadcast follows:

Unofficial transcript from DisRespect, with Geoff Langhorne, 14th May, 2009

Geoff: DisRespect welcomes Rob Wilson, who is a professor at the University of Alberta in philosophy is it Rob?,

Rob: ah, that’s right, Geoff.

Geoff: and coordinator with the What Sorts of People Network in Alberta, and Barb Farlow, who was a mechanical engineer and is now an advocate on behalf of people with disabilities in Ontario. Welcome to the show.

Barb: Thank you.

Rob: Thanks for having us.

Geoff: Ok. Barb, this concern that brought you together with Rob started with an incident in your life that our listeners might not be aware of. Do you want to give us the once over lightly?

Barb: Sure, I’ll give you the brief version, Geoff. My daughter died in August of 2005 within 24 hours of arrival at the Hospital for Sick Children. Annie had a genetic condition that was related to disability. Generally the condition comes with very serious anomalies that are considered lethal, such as severe brain defects. However, like all genetic conditions there are a wide range that exist, and my daughter was mildly afflicted. We knew that we would have difficult decisions to make before she was born and ironically we had many meetings at the hospital, specifically to discuss policies and eligibilities for surgery, and ethics and what would happen if this and what if that because we really needed to understand the medical system so that we could properly manage our daughter’s heath within its confines. Once we were assured of the policies, her rights, the ethics, the matter in which any ethical disputes or dilemmas would be resolved, we placed our entire trust in the system.

Philosophy, Eugenics & Disability in Alberta and Places North – Simo Vehmas Part 1

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.  Roughly four videos will be featured each week.

To download the full description of the symposium please click here.

With this video we begin the presentation by Simo Vehmas.  Simo’s presentation is titled “Preventing Disability: Nordic Perspectives” and it focuses on summarizing past and present attitudes towards eugenic practices in Nordic countries, principally Finland, with special attention paid to attitudes and ideas around eugenic practices of preventing disability.

Part 1

Highlights: Origins of eugenic ideas in Finland; use of eugenic practices to reinforce various social power structures; ineffectiveness of marriage regulations lead to sterilization practices; intersection of eugenics, morality and criminality.

A transcript follows the cut.

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

Never Mind the Bollocks: It’s Heavy Load!

The five members of heavy load launching a red flag

Yesterday I saw the world premier of the brilliant documentary Heavy Load: A Film About Happiness at the Edmonton International Film Festival. It’s about the UK punkish band of the same name. They’re middle-aged punk rockers with a difference: the band started with the musical dreams of several individuals, each with some cognitive / learning impairment or other, to be in a band. Together with support staff Paul and Mick (guitars), Michael (drums and vocals), Simon (vocals) and Jim (guitar and vocals) formed Heavy Load over 10 years ago. The doc follows the band over about a 24 month period, culminating in their Stay Up Late Campaign last year, which highlighted a late night limitation of many of their audience members: