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

 

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.

Judge approves man’s sterilization

It is the first time in England and Wales a court has sanctioned a man’s sterilization. A High Court judge has sanctioned the sterilization of a man “in his best interests” in a landmark legal ruling.
The 36-year-old, from the Midlands, has learning difficulties and already has a son, born in 2010, with his girlfriend.
Justice Eleanor King ruled that a vasectomy could take place after hearing that another child could cause the man :psychological harm.”
Experts said he was capable of sexual consent but did not have the capacity to make decisions about contraception.

The entire story was released today in the BBC News and can be viewed here: http://www.bbc.co.uk/news/uk-23721893

Sterilization Abuse in State Prisons: Time to Break with California’s Long Eugenic Patterns

An article by Professor Alex Stern, Living Archives Team Member, has been released today in The Huffington Post. The article, Sterilization Abuse in State Prisons: Time to Break With California’s Long Eugenic Patterns, reveals that at least 148 female prisoners in 2 California institutions were sterilized between 2006 and 2010. Tubal ligations in violation of prison rules during those five years – and there are perhaps 100 more dating back to the late 1990s, according to state documents and interviews.  Professor Stern’s work points to a discernible racial bias in the state’s sterilization and eugenics programs.

Corey G. Johnson of the Center for Investigative Reporting (CIR) published on July 7th a detailed expose’ of unauthorized sterilizations of unwilling women in California prisons. Johnson’s excellent report brought international attention to a scandal that some activists and researchers have at least partially documented. It is important to note that, as the CIR report says, these sterilizations were illegal: Federal and state laws ban inmate sterilizations if federal funds are used, reflecting concerns that prisoners might feel pressured to comply. California used state funds instead, but since 1994, the procedure has required approval from top medical officials in Sacramento on a case-by-case basis. Yet no tubal ligation requests have come before the health care committee responsible for approving such restricted surgeries….

How could this happen?

Governor Gray Davis apologized in 2003 for California’s twentieth-century sterilizations, 20,000  procedures carried out under an explicitly eugenic law. He did so  quietly, via press release, and with no attempt to discover or  compensate the victims. (Recognized experts on American eugenics were  disappointed at the time: Paul Lombardo called it “premature” and Alexandra Minna Stern said it was “preemptive.”) Now his statement seems like a sham. The  fault is no longer the law, it’s the failure to follow the law.

North Carolina is still struggling to pass a budget that includes compensation for its victims of eugenic sterilization.  California has barely started the process of coming to terms with its  troubled history.

The California state prison system is overcrowded — Governor Jerry Brown is appealing a federal court order to release inmates — and conditions are so bad that 30,000 are on  hunger strike. If this report about sterilization helps to usher in a  period of genuine reform, that would be wonderful.

We would still need to educate all too many people, inside and  outside the jail system, about the moral and practical harm of modern  eugenics. Based on some of the remarks by state officials that Johnson  reported, and on some of the comments on coverage of his investigation,  people slide right back into eugenic ways of thinking.

Justice Now is an organization that works with women in prison. Their website has links to the CIR  reports and videos.

Professor Stern’s article in the Huffington Post raises awareness about eugenic practices and calls for a new era of human rights and the protection of vulnerable populations. Tony Platt co-authored the post. The original article can be found here: http://www.huffingtonpost.com/alex-stern/sterilization-california-prisons_b_3631287.html

Let’s make a baby: Pushing the boundaries of conception – CBC Radio One

CBC Radio One is exploring the ethical ramifications of cutting-edge reproductive technologies, such as three parent in-vitro fertilization and post-menopausal pregnancy. From June 25, 2013 through August 29, 2013 on CBC Radio One, Tuesday at 7:30 pm and Thursday at 9:30 pm. All ten episodes are available online here: http://www.cbc.ca/thecurrent/2013/08/06/lets-make-a-baby-pushing-the-boundaries-of-conception/

Disability Rights V Quality Birth Rhetoric: The Construction of Disability in China

Interesting article on the construction of disability in China by Yee-Fui Ng (Sessional Lecturer and PhD Candidate, Monash University Law School). The abstract: This article explores the tension between the Chinese government’s strong engagement in disability rights and simultaneous focus on ‘quality births’, which results in the abortion of disabled foetuses. At a broader level, the author examines the politicised and cultural construction of disability in China by scrutinising how the ‘disabled’ are defined, administered, policed and governed in postsocialist China.

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.

“Baby M”, End of Life Policy, and the Stollery Children’s Hospital

Some of you may be aware of the matter of “Baby M”, involving a 2-year-old child who was admitted to the Stollery Children’s Hospital in Edmonton, Alberta, on May 25, 2012. She required a ventilator for life support. Despite the parents’ opposition to the withdrawal of life-sustaining treatment, which incorporated their religious beliefs, the Court of Queen’s Bench found that it was in the child’s best interests to terminate life support and, on September 14, 2012, ordered the withdrawal of the ventilator. The Court held that there is a general notion in society that a life dependent upon machines and without awareness is not in the best interests of any patient. On September 19, 2012, a three member panel of the Court of Appeal held that there was no error in principle in the Queen’s Bench decision and the appeal was dismissed. On September 20, 2012, the Supreme Court of Canada dismissed the parents’ application for a further stay. “Baby M’s” ventilator was removed, she suffocated, and died.

 
The parents are appealing to the Supreme Court of Canada to have Canada’s highest court decide important issues regarding termination of life-sustaining medical treatment. This decision of the lower courts and, if leave is granted, the ultimate decision of the Supreme Court of Canada will decide the process that will be used and who will make decisions to terminate life support.

These decisions of the Alberta Courts and how they will be followed in the future may ultimately affect individuals in your organization or your community. Should you believe that you, your organization, or community have a position on these life and death issues that should be heard and considered

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

Obesity and Naturalness

High profile anti-obesity activist Meme Roth writes on her blog: “Let’s finally recognize obesity as abuse—abuse of our children, abuse of ourselves—and together take action.” Roth has recently trademarked the term “second-hand obesity”, playing on “second-hand smoke.” She writes that second-hand obesity is passed along from parent to child and from citizen to citizen. Roth makes numerous television appearances every year and continually underlines the association of fat with sickness, death, and unnaturalness.

New research by Dr. Arya Sharma is beginning to break the elision of fat and sickness with his new research:

“The back-to-back studies come as more evidence emerges that a significant proportion of overweight people are metabolically healthy and that the risks associated with obesity do not make for a one-size-fits-all formula.” More can be found here: http://www.canada.com/health/Heavy+healthy+formula+slims+down+definition+dangerously+obese/5257089/story.html

If the risks associated with obesity are less dramatic than once believed, then what is feeding this culture of obesity panic that aims to “blast away fat” and “burn belly fat” away in 10 days or less?

What surprises me about much of the writing on obesity, like Roth’s and Richard Carmona, the Surgeon general of the United States who compared the obesity epidemic to terrorism, is that

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.

Limelight Film Festival: Edmonton

The Limelight Film Showcase, Day 2, is TOMORROW, i.e., Tuesday 18th October, 2011, at the University of Alberta campus in Edmonton.  All events are in Myer Horowitz Theatre in the SUB Building, and the festival runs from noon until around 10pm and includes not only short and feature films, but also live dance and movement performances.  Check out the schedule via the festival page here.  All events are free and open to the public.

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

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:

CBC News – Edmonton – Alberta’s sex sterilizations re-examined

from CBC Edmonton, last night, with stacks of comments already.

CBC News – Edmonton – Alberta’s sex sterilizations re-examined.

‘Newgenics’ still rampant in Alberta, conference told

Front page, Edmonton Journal, by Andrea Sands:

 

‘Newgenics’ still rampant in Alberta, conference told.

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. 

Chromosome Disorder Outreach

Thanks to Velvet Martin for posting a link to the following video from CDO; her daughter Samantha features.  What do people think of the message here?  Community building around chromosomal disorder?  A humanization of the dehumanized who “look kinda funny”?  A tacit complicity with the medicalization of human variation (via the notion of “disorder”)?  All of the above?  Something else?

Living Archives on Eugenics in Western Canada

From Express News, University of Alberta:

Provincial eugenics archives awarded one of two SSHRC Awards

By Michael Brown

Robert Wilson

---

February 10, 2010 – (Edmonton) On Feb. 4, the federal government announced nearly a $1 million each over six years for two University of Alberta-led projects aimed at bringing communities and universities together to build knowledge on areas affecting Canadians.

Robert Wilson, professor in the Department of Philosophy, was awarded $1 million in a community-university research alliances grant by the Social Sciences and Humanities Research Council of Canada to fund his project titled “Living Archives on Eugenics in Western Canada.”  Read the rest here