Adrienne Asch–RIP

Adrienne Asch

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,

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Future Past: Disability, Eugenics, & Brave New Worlds

Future Past: Disability, Eugenics, & Brave New Worlds. A public symposium on the history and ongoing implications of eugenics ideologies and practices for people with disabilities.
Why do these issues matter? How can we address them in teaching and pedagogy, in policy and activism, and in art?

On November 1, 2013 at San Francisco State University, Seven Hill Conference Center from 9:00 am – 8:00 pm.
The Living Archives on Eugenics in Western Canada is co-sponsoring a conference, dinner and reception plus the screening of FIXED: The Science/Fiction of Human Enhancement. Conference organizers include: Paul K. Longmore Institute on Disability, Living Archives on Eugenics in Western Canada, and the Center for Genetics and Society.

Registration is free:  geneticsandsociety.org/futurepast

Future Past is the result of a cross-national collaboration among advocates and academics interested in gaining a deeper understanding of the long and tangled relationship between disability and eugenics, and the contemporary implications of genetic technologies to the lives and futures of people with disabilities.

Program – November 1, 2013

9:00 – 9:15: Welcome

  • Provost Sue Rossier, San Francisco State University
  • Catherine Kudlick, Director, Paul K. Longmore Institute on Disability

9:15 – 9:30: Table Introductions

9:30 – 11:30: What? Eugenics and Disability: Past and Present

Many people are unaware of the history of eugenics movements in North America, yet they are disturbingly relevant today.

Presenters:

  • Alexandra Minna Stern (moderator), Departments of Obstetrics and Gynecology, American Culture, and History at the University of Michigan.
  • Marcy Darnovsky, Center for Genetics and Society
  • Glenn SInclair, Living Archives on Eugenics in Western Canada
  • Nicola Fairbrother, Living Archives on Eugenics in Western Canada

Table Discussions

11:30 – 12:30 : Lunch

12:30 – 2:30: So What? The Consequences of Misremembering Eugenics

What are the social and ethical consequences of omitting eugenics from historical memory or misrepresenting it? What is the price of the pursuit of “human betterment” for reproductive and disability justice?

Presenters:

  • Marsha Saxton (moderator), World Institute on Disability
  • Rob WIlson, Living Archives on Eugenics in Western Canada, University of Alberta
  • Troy Duster, Warren Institute for Law and Society Policy, University of California, Berkeley
  • Rosemarie Garland-Thomson, Emory University

Table Discussions

2:30 – 3:00: Break

3:00 – 5:00: Now What? Looking Ahead to Brave New Worlds

What is being done – and what can be done – to increase public and student understanding of the legacies of eugenics through teaching, activism and art?

Presenters:

  • Milton Reynolds (moderator), Facing History and Ourselves
  • Gregor Wolbring, Living Archives on Eugenics in Western Canada, University of Calgary
  • Kate Wiley, Lick-Wilmerding High School
  • Patricia Berne, Sins Invalid

Table Discussions

5:00 – 6:30: Dinner and Reception

6:30 – 8:00 Sneak-preview screening

FIXED: The Science/FIction of Human Enhancement

Producer/DIrector Regan Brashear will answer questions

 Future Past Nov 1

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 16th.

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.

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Australian paper says Euthanizing Babies should be allowed

A paper published in the Journal of Medical Ethics argues that abortion should be extended to make the killing of newborn babies permissible, even if the baby is perfectly healthy, in a shocking example of how the medical establishment is still dominated by a vicious mindset.

The paper is authored by Alberto Giubilini of Monash University in Melbourne and Francesca Minerva at the Centre for Applied Philosophy and Public Ethics at the University of Melbourne.

The authors argue that “both fetuses and newborns do not have the same moral status as actual persons,” and that because abortion is allowed even when there is no problem with the fetus’ health, “killing a newborn should be permissible in all the cases where abortion is, including cases where the newborn is not disabled.”

The complete article can be found here:http://www.eutimes.net/2012/03/australian-paper-says-euthanizing-babies-should-be-allowed-as-abortion/

“Why Cognitive Enhancement is in Your Future (and Your Past)”

For those interested in transhumanism, cognitive enhancement, and the potential ethical problems that follow, this interview with Duke Philosophy Professor Allen Buchanan might be of interest. Buchanan has written extensively on the ethical implications of human enhancement, notably in his book Better than Human, and has argued forcefully in favour of pursuing cognitive enhancements.

Buchanan disagrees with critics who suggest that cognitive enhancement should not be pursued, in part, because it’s antithetical to human nature. In fact, he argues that the desire to improve our capacities, and our ability to do so, constitutes an important part of our nature.

I think that any appeal to the notion of human nature, on either side of the enhancement debate, is tricky and problematic and has to be handled with care. Yes, in one sense we might say that it’s part of human nature to strive to improve our capacities. Humans have done this in the past by developing literacy and numeracy, and the institutions of science, and more recently we’ve done it with computers and the Internet. So, yes, if an alien were looking at humanity and asking “What is human nature?” one of the ingredients is going to be that these beings seem quite concerned with improving their capacities and they seem to have a knack for doing it.

Check out the complete, and lengthy, interview for more discussions on this topic, the films Gattaca and Limitless, the potential to exacerbate social inequalities, and other ethical debates surrounding cognitive enhancement.

Our Post-Human Futures Conference

Living Archives team member, Gregor Wolbring, will be speaking on the body and prosthetics at the “Frontiers in Research: Our Post-Human Futures” conference at the University of Ottawa on November 15, 2011.

The University of Ottawa is pleased to present the thirteenth annual Frontiers in Research lectures. This year’s theme is Our Post-Human Future .

During the past decade, human perfection and even immortality have become topics of renewed interest due to groundbreaking scientific advancements, and are now much more tangible and potentially achievable goals. The quest for human improvement through biomedical means appears to be unstoppable in the developed world. But this drive towards the “post-human” has also given rise to discussion, debate, conflict and a great deal of research on where to take the human species.

Frontiers in Research: Our Post-Human Future will explore these questions in light of developments in the fields of genetics, neuroscience and prosthetics, and their social, political, economic, ethical and religious implications.

For more information on the conference, click here.

FIXED: a Kickstarter plea

Aimee Mullins' Legs

Some of Aimee Mullins' legs

Oakland-based filmmaker Regan Brashear is launching her film FIXED: The Science / Fiction of Human Enhancement and is running a Kickstarter campaign to help with funding for the film’s clean-up.  You can start with donations of $1 and up–details about the campaign and film here.  The campaign runs until 9.03am EDT, August 31, so donate NOW.  A brief excerpt from the site:

What’s the film about?  What does “disabled” mean when a man with no legs can run faster than many Olympic sprinters? With prenatal screening able to predict hundreds of probable conditions, who should determine what kind of people get to be born? If you could augment your body’s abilities in any way imaginable, what would you do and why? From pre-implantation genetic diagnosis to neural implants and bionic limbs, researchers around the world are hard at work developing a myriad of technologies to fix or enhance the human body, but what does it mean to design “better humans” and do we want to? FIXED follows three remarkable people: Continue reading

Health Ethics Seminar and Health Ethics Week Event

JOHN DOSSETOR HEALTH ETHICS CENTRE
HEALTH ETHICS SEMINAR AND HEALTH ETHICS WEEK EVENT
Advances in Genetic Testing: Professional and Consumer Perspectives
Dick Sobsey, EdD Professor Emeritus, John Dossetor Health Ethics Centre
& Faculty of Education
Monday, 7 March 2011 12:00—12:45pm Room 1J2.47 Walter MacKenzie Health Sciences Centre
University of Alberta

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American Society for Bioethics and Humanities: Call for Proposals

American Society for Bioethics and Humanities
Call for Proposals
ASBH 13th Annual Meeting
October 13-16, 2011
Minneapolis, MN
The American Society for Bioethics and Humanities‘ 13th Annual Meeting is scheduled for
October 13-16, 2011, in Minneapolis, MN at the Hyatt Regency Minneapolis. Sleeping rooms at
the Hyatt can be secured at the ASBH group rate of $199 beginning in August. Reservations will
be taken on a first-come, first-served basis.

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History of Biology Seminar and Informatics Workshop

 

2011 MBL-ASU History of Biology Seminar:
History of Cell BiologyMay 15 -21, 2011 in Woods Hole, MA

 

The MBL-ASU History of Biology Seminar is an intensive week for graduate students, postdoctoral associates, younger scholars, and established researchers in the life sciences, history, philosophy, and the social sciences. Continue reading

Woman with Male Chromosomes

Katie Baratz thought she was a typical teenage girl. Katie was born with XY chromosomes a condition called androgen insensitivity syndrome, or AIS.  This intersex condition is one of many that pushes the boundaries of “normal” sex categories.

In 1990, AIS was still called “testicular feminization,” a name I hate. It makes me sound like a failed man, not a woman at all. The belief since the 1950s was that if a woman knew she had this, she’d go crazy or become a lesbian. The doctor told my stunned parents that I could grow up normally, even adopt, but I shouldn’t know I had XY chromosomes or testes. My parents decided to tell me gradually.

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David Lee Hull and Mary Anne Warren

This week saw the death of two colleagues-at-a-distance whom I more than respected, not simply and coldly for their contributions to philosophy, but for the friendship and caring mentorship they each showed to me early in my career, as I know they did with others. I’ll keep this brief here, just giving some general pointers and two short memorial anecdotes I’ve already posted at other sites.

David Hull was the founding figure in the philosophy of biology.  John Wilkins has already got three posts up on him at Evolving Thoughts, David Hull is dead, David Hull’s Philosophy, and Ruse on Hull: A Memoir.  The last makes me cringe a little, but that’s probably because Michael Ruse often induces that effect, at least in me.  In response to the first, I said:

David was one of the three people I sent my first attempt in phil of biology to–the others were both people in the field whom I’d had some contact with before in other contexts. I was a third year assistant professor mainly working in phil of mind and cog sci at the time, and the paper was on John Dupre’s “promiscuous realism”. Like the others, David wrote back encouragingly and sympathetically. The welcoming response from David, especially since I was a complete stranger to him, marked an important contrast with the fluff and competitiveness of phil of mind at that time, and it made phil of biology a truly attractive option for me to pursue more seriously.  There are likely many other short anecdotes about David’s kindness and professional integrity, but this small one with a big effect for me is what comes to mind first. He will be missed all round.

I also admired David for his successful efforts to convince the Philosophy of Science Association to avoid holding its meetings in overtly homophobic states.

Mary Anne Warren was one of four philosophers who, in essence, put applied ethics on the philosophy map in the early 1970s.  Continue reading

Templeton Positive Neuroscience Awards

Apparently, I’m an “honorary distinguished senior advisor” to this project, where I assume that “honorary” means “unpaid”, “distinguished” is a typo, “dis” for “ex”, and “senior” means “old”.  The complete information on the award recipient projects may be of interest to some readers of the blog. Congratulations to Laurie Santos especially for her grant on the origins of altruism!

Positive Neuroscience, U of Penn

Positive Neuroscience / Psychology

Award-winning researchers to explore human flourishing
from neural networks to social networks

The Positive Psychology Center of the University of Pennsylvania and the John Templeton Foundation (www.templeton.org) have announced the recipients of the Templeton Positive Neuroscience Awards. The project will grant $2.9 million in award funding to 15 new research projects at the intersection of Neuroscience and Positive Psychology.

The winning projects will help us understand how the brain enables human flourishing. They explore a range of topics, from the biological bases of altruism to the effects of positive interventions on the brain.

The Positive Neuroscience Project (www.posneuroscience.org) was established in 2008 by Professor Martin E.P. Seligman, Director of the Penn Positive Psychology Center, with a $5.8 million grant from the John Templeton Foundation. In 2009, the project announced the Templeton Positive Neuroscience Awards competition to bring the tools of neuroscience to bear on advances in Positive Psychology. Seligman founded the quickly-growing field of Positive Psychology in 1998 based on the simple yet radical notion that what is good in life is as worthy of scientific study as what is disabling in life.  Read the full press release from the PNP website.

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.

Advice to a Young Bioethicist

Bioethics Baby

The following is the beginning of a response delivered by distinguished bioethicist Arthur Caplan to Ezekiel Emanuel’s address to the American Society for Bioethics and Humanities earlier this year. The full speech was posted by Linda MacDonald Glenn at the Women’s Bioethics Project blog about a month ago.

The issue: what kind of training do bioethicists need? More descriptively (if awkwardly): what is it important for the people providing advice on life and death decisions to parents, children (of aged parents), doctors, hospitals, and others involved in health care, to know?

What Sorts readers might also be especially interested in checking out Emanuel’s views of the legalization of euthanasia, and might recall the misrepresentation of those views in the recent discussions of Death Panels in the US.  Anyway, here’s Caplan’s speech, which provides much food for thought: Continue reading

Gregory Stock on the Uses of Future Technologies

Here is an older, short talk by Greg Stock, from 2003–How Biotech Will Drive Our Evolution–on uses of present and future biotechnologies for human betterment that has recently been posted on TED Talks.

One of the interesting things is that while Stock presents a dismissive view of past hype about future technologies–e.g., the Human Genome Project and curing all ailments–there is also much more uplifting and positive talk about the uses of technology in medicine in 5-10 years, i.e., about the period that we’re almost in the middle of now. It’s nice to have predictions whose test conditions are now in place so we can, well, see how they have fared. I guess you can decide how much difference there is between the past and the present.

A transcript follows the cut.

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Philosophy, Eugenics and Disability in Alberta and Places North – Rob Wilson Part 2

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 second part of the presentation by Rob Wilson (The first part may be found here). Professor Wilson’s presentation is titled “Building Inclusive Communities Through Practices of Collective Memory: The Case of Eugenic Sterilization in Alberta.” Part interim report, part philosophical reflection, this presentation is a glimpse into the ongoing process of exploring the eugenics history of Alberta.

Part 2

Highlights: reaction to relatively recent publishing of sterilization rates, quote from MacEachran on the value of sterilization.

A transcript follows the cut.

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