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.

Surviving Eugenics in the 21st Century: Our Stories Told

Join us in Edmonton on Monday October 21, 2013 at the Metro Cinema at the Garneau for the world premiere of Surviving Eugenics in the 21st Century: Our Stories Told. A series of unique short videos, survivors of Alberta’s eugenic era share their stories. What does eugenics mean now for a variety of people parenting, or considering parenting in contemporary Alberta?

Watch the trailer (at the end of this post!)

The ideas and practices aimed at improving “human breeding” known as eugenics were influential across North America in the first half of the 20th century. The Sexual Sterilization Act of Alberta was law in the province from 1928 until 1972 and was aimed to prevent what it called the “multiplication of the evil by transmission of the disability to progeny”.

The province of Alberta occupies a special place in this history. First, it is the province in which the vast majority of eugenic sterilizations in Canada were performed (approximately 90%), with British Columbia being the only other province to pass involuntary sterilization legislation that was explicitly eugenic. Alberta’s eugenic sterilization program was vigorously implemented until the repeal of the Sexual Sterilization Act of Alberta in 1972. Secondly, it was against the Province of Alberta that Leilani Muir won a landmark legal case in 1996 for wrongful sterilization and confinement, a case that has helped to preserve a rich documentary basis for understanding the history of eugenics in Western Canada.

The typical grounds for eugenic sterilization were that a person’s undesirable physical or mental conditions were heritable, and that those persons would not make suitable parents. Central amongst those targeted by such eugenic practices were people with a variety of disabilities, especially (but not only) developmental disabilities. Yet many other marginalized groups— single mothers, First Nations and Métis people, eastern Europeans, and poor people—were also disproportionately represented amongst those subject to eugenic ideas and practices, such as sterilization. An understanding of why, and of how eugenics operated as it did in Western Canada, is relevant not only to the 3.6 million Canadians with a disability, but to all Canadians who embrace human diversity and strive to build inclusive communities.

Surviving Eugenics in the 21st Century: Our Stories Told premieres at the Metro Cinema at the Garneau (8712 – 109 Street, Edmonton) on Monday October 21, 2013. Doors open at 6:30 pm and the film begins at 7:00 pm.

Join the film-makers, survivors, and other interviewees present for this world premiere!  Closed captioned (CC).  Sponsored by the Living Archives on Eugenics in Western Canada www.eugenicsarchive.ca  FREE ADMISSION

The trailer: http://youtu.be/2NREI24ugT0

Individualism and Eugenics

h/t to Ken Bond; from Nathaniel Comfort at the Scientific American blog:

Is eugenics a historical evil poised for a comeback? Or is it a noble but oft-abused concept, finally being done correctly?

Once defined as “the science of human improvement through better breeding,” eugenics has roared back into the headlines in recent weeks in both Mr. Hyde and Dr. Jekyll personae. The close observer may well wonder which will prevail. The snarling Mr. Hyde is the state control over reproduction.

To read the full story:

http://blogs.scientificamerican.com/guest-blog/2013/08/23/is-individuality-the-savior-of-eugenics/

 

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/

Eugenic sterilization NOW

courtesy of Miroslava Chavez-Garcia and from The Modesto Bee:

Female inmates sterilized in California prisons without approval

Published: July 7, 2013 Updated 8 hours ago

http://www.modbee.com/2013/07/07/2796548/female-inmates-sterilized-in-california.html

The Sterilization of Leilani Muir

A new Wikipedia article about the National Film Board (NFB) documentary “The Sterilization of Leilani Muir” has been launched. The article is about the 1996 documentary directed by Glynis Whiting.  The documentary presents the story of Leilani Muir, starting when she was a young child and continues through her personal journey of her time at the Provincial Training School (Michener Centre) in Red Deer, Alberta, her sterilization and the launch of her successful lawsuit against the provincial government. The Living Archives on Eugenics in Western Canada held a showing of the film during the first Alberta Eugenic Awareness Week (AEAW) in 2011. The article can be found here: http://en.wikipedia.org/wiki/The_Sterilization_of_Leilani_Muir

Alberta Eugenics Awareness Week 2012: Highlights Video

Well, at last, here it is.  Watch, enjoy, share, like.

Rob Sparrow: talks on eugenics TODAY in Edmonton

Just a quick reminder:

Professor Rob Sparrow will be giving two talks in Edmonton at the University of Alberta on Monday April 8 and Tuesday April 9, 2013. Both talks are open to the public and free! Talks are being held on campus in ETLC (Engineering Teaching & Learning Complex) Continue reading

Parents try to force surrogate mother to abort their disabled baby

Blogger Cassy Fiano writes about parents who try to  force their surrogate to abort their disabled baby. Cassy is has two sons, one has Down Syndrome.

Crystal Kelley wanted to give the gift of a baby to a family who couldn’t have children. She also needed the money that surrogacy brings. And so, she ended up becoming a surrogate mother to a couple in her state of Connecticut who had three children but wanted more. The first half of the pregnancy was friendly and happy, with Kelley and the parents communicating regularly.

Then there was an irregular ultrasound. After several more ultrasounds, the picture was clear: this was a baby who would be born with some disabilities. She had a cleft lip and palate, a cyst on her brain, and a heart defect. The baby’s parents immediately began to pressure Kelley to have an abortion, claiming it was the more “humane” option. Now, most decent people wouldn’t consider it humane to rob a child of her life simply because she might have a disability. This was the way that Kelley felt, and she refused to have an abortion

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Pride Week Panel on Reproductive Autonomy: Control of Sexuality

Here’s the poster for the upcoming panel, Reproductive Autonomy: Control of Sexuality that we’re hosting this Wednesday as part of the U of Alberta’s Pride Week.  The sesssion will feature Lise Gotell and Lane Mandlis as speakers, with Moyra Lang and Rob Wilson performing an interpretative dance (ok, perhaps not, … but we’ll do something useful … or at least will be there).  Please print and post, or distribute electronically.  Text only version included as well.

Pride Week Eugenics Panel Poster

Pride Week Eugenics Panel Text

Reproductive Autonomy: Control of Sexuality A Panel Discussion at Pride Week, University of Alberta

Wednesday March 20, 2013 at 3:00 pm – 4:00 pm in Education South Building at the University of Alberta the Living Archives on Eugenics is sponsoring a panel discussion featuring Professor Lise Gotell, Chair of Women’s and Gender Studies and Dr. Lane Mandlis, with Moyra Lang, and Professor Rob Wilson. ASL interpreting services will be offered at this event. Find us on Facebook http://www.facebook.com/#!/events/270019033131796/?fref=ts

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Forced sterilization and disability in Australia

From a “better babies” competition, 1913

 

A Senate committee was recently established in Australia to review existing law and social policy concerning the sterilization of people with disabilities.

http://www.aph.gov.au/Parliamentary_Business/Committees/Senate_Committees?url=clac_ctte/forced_sterilisation/info.htm

It seems that the inquiry is a response to public response (surprise? outrage?) to finding out that this practice continues in Australia under state and territorial legislation, and beyond it.

I suspect that the commission will find that Continue reading

Eugenics in Toronto – Hiding Ultra-sound results

The Toronto Star recently released an article on the fact that many GTA hospitals, “particularly those in ‘ethnic’ areas [...] won’t let their ultrasound staff tell pregnant women the sex of the fetus,” in order to prevent abortion.

A study from St. Michael’s Hospital reveals that while male/female rations for first child of immigrants from India is 105/1oo, the ratio for third children of immigrants was 136/100.  Although researchers caution that their findings are not actually evidence of female feticide (indeed, they do not know why results have turned out as such) and urge people not to racially profile citizens after that, it has caused some concern in the community, and resulted in withheld ultrasounds.

http://www.thestar.com/news/article/1162357–female-feticide-is-it-happening-in-ontario?bn=1

http://www.thestar.com/news/article/1162613–six-gta-hospitals-won-t-reveal-fetal-sex-during-ultrasound?bn=1

http://www.thestar.com/opinion/editorialopinion/article/1163258–hiding-toronto-hospital-ultrasound-results-to-prevent-sex-selection-is-pointless-and-possibly-racist

Bioethicist, Tom Koch, commented on pregnant women who choose to abort a fetus with Down syndrome, “We’re engaged in eugenics.”

Here we go again… population panic and the blame game

Last month the United Nations announced that we’ve arrived at a human population of more than 7 billion people, sounding a call for alarm to provide targeted reproductive services for the 215 women worldwide that do not have access to reproductive services, according the UN Population Fund.

 Population panic is not new. In the early 19th century, Anglican clergyman Thomas Malthus claimed that the dangers of population growth would put human civilization in jeopardy. Malthus did not support keeping the poor alive through charitable means and protested the Poor Laws of the time, which provided food aid and support for poor citizens and set the groundwork for the modern welfare state. Despite the fact that Malthusian population theory was proven to be erroneous- his work has been tremendously influential, most importantly, in evolutionary biology. In 1968, Paul Ehrlich’s bestselling book ‘The Population Bomb’ once again raised alarmist, doomsday predictions about the danger of population growth causing crises of apocalyptic proportions.  His predictions were also inaccurate.

 There is no question that we are facing a wide range of environmental and financial crises and far too many women lack access and choice in reproductive medicine. However, in the face of doomsday fears of scarcity, targeted population control of specific groups based on class, medical status, race and other social determinants has been a troubling historical trend. The question is not ‘if’ population is a problem; but ‘who’ gets targeted in population control programs.  Since the 1920s, targeted and eugenic population control in marginalized populations has been present across North and South America, Australia, the Middle East and Europe.  Anecdotally, we can estimate it to be happening, or have happened all over the world. This past summer at the 9th Annual Conference in Ethics in Development in Pennsylvania, a medical researcher from Nigeria approached me following presentation of my paper on sterilization in the Americas, to say that forced sterilization surgery in tribal communities in South and Western Africa has been happening for many years and went on to describe a personal account. Belief that these incidents of reproductive abuse represent collateral damage in the more pressing fight for contraception access has cloaked the deeper Malthusian ideology that lives who cannot provide for themselves are ‘fertility liabilities’.

 The Reuters humanitarian news service, Alertnet, recently quoted Parvinder Singh, of ActionAid India on the relationship between fears of scarcity and population: “the issue of population cannot be seen divorced from the aspect of resource or energy footprint,” However, Singh continued to note that: “the largest drain continues to be in the West which have traditionally consumed, and continue to, massive volumes of resources because of a life-style and purchasing power that far exceeds that of so-called high population poorer countries.” Research has demonstrated that raising quality of life for women and their families leads to a drop in fertility- so much so that the world’s richest countries are fearing a further ‘drop’ in their national populations. The recent US recession has created a record low in fertility, leading to fears that there will be ‘not enough’ children born to sustain the national economy. So, not enough of one group- but too many of another? On what basis are these determinations made? On relative value to the economy?

 If we are to make progress against this historical trend of using population panic to make authoritarian determinations over which lives have value for reproduction, we have to own up to the pervasive Malthusian ideology that views fertility in the developed world as a valuable resource and developing world fertility as a global liability

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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