Adrienne Asch–RIP

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,

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

 

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!

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

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/

Alberta Eugenics Awareness Week 2012: Highlights Video

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

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.

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

Forced Sterilization of Women and Girls with Disabilities in Australia: The WWDA submission

In November, I posted on the Australian Senate Inquiry into the forced sterilization of women and girls with disabilities.  Women With Disabilities Australia (WWDA) has just made its powerful, eye-opening submission to the Inquiry.  And there’s something you can do, pronto, that may make a difference here: endorse or support the submission.  Anyone who thinks that forced sterilization is a “thing of the past” shoudl read this submission.  First, from the submission (p.20),

There is a historical precedent in several countries including for example the USA (until the 1950s), in Canada and Sweden (until the 1970s), and Japan (until 1996) indicating that torture of women and girls with disabilities by sterilisation occurred on a collective scale – that is, mass forced sterilisation. This policy was rationalised by a pseudo-scientific theory called eugenics – the aim being the eradication of a wide range of social problems by preventing those with ‘physical, mental or social problems’ from reproducing.  Although eugenic policies have now been erased from legal statutes in most countries, vestiges still remain within some areas of the legal and medical establishments and within the attitudes of some sectors of the community:

• “Disabled people should not have babies.”

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

Contemporary practices of sterilization in Australia

As a follow up to the post in the first link below, here is a list of further related links on those wanting to know more.  Thanks to a helpful anonymous reader of the What Sorts blog who provided most of the links below but who doesn’t wish to be identified.  Folks in Oz: let us know if you have more information, are undertaking action, whatever.

• https://whatsortsofpeople.wordpress.com/2012/11/01/forced-sterilization-and-disability-in-australia/  Recent What sorts blog post on forced sterilization in Australia TODAY:

• 1997 & 2001: reports from the Human Rights Commission in Australia that discuss the practice.
• 1998– official document assessing situation, number of sterilizations per year, convenience of sterilizing disabled woman http://www.familycourt.gov.au/wps/wcm/resources/file/ebb8810487b4021/MURRAY.pdf
• 2001- Study and report from Women With Disabilities Australia.  Thorough, including much relevant history, sterilization survivor testimony and narratives, as well as a talk given by Adrienne Asch, and references to the significance of the Canadian eugenic history here, and reports “The Sterilization of Leilani Muir” as one of two video source. http://www.ag.gov.au/Documents/HRPB%20-%20NHRAP%20-%20Baseline%20Study%20-%20Submission%20-%20Women%20with%20Disabilities%20Australia%20-%20Attachment%205.PDF
• Leilani Muir on The Current, with Anna Maria Tremonti

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

Documentary on Ashley Treatment

22 May 2012 Disability Rights Washington and Video Galaxy  have great new video  on the Ashley Treatment on their website. There is also a poll on this page asking whether you believe more safeguards are needed to protect the civil rights of people with disabilities from civil rights violations and medical discrimination of the Ashley Treatment and related procedures.

Tommy Douglas, young eugenicist

from The National Post, by Michael Shevell

This NP article is itself taken from a longer article in the January 2012 issue of the Canadian Journal of Neurological Sciences.

Though bespectacled and slight of build, Tommy Douglas is a giant of 20th Century Canadian history. His iconic, indeed mythic, status within the Canadian historical landscape is exemplified by his selection, in 2004, as “The Greatest Canadian” in a CBC-mandated competition above such luminaries as former Prime Ministers Pierre Elliot Trudeau and Lester Bowles Pearson, scientist Frederick Banting, and hockey great Wayne Gretzky. This honour reflects Douglas’ role as the “father” of Canadian Medicare, which has emerged, for better or worse, as a defining feature of a Canadian national identity.

Medicare has in effect emerged as a statement of national values. Values that include compassion, fairness, tolerance and equality; values that are not selectively applied, but are extended to embrace even the most vulnerable of Canadians.

Eugenics, by contrast, concerns itself at its most fundamental level with the selective breeding of humanity to improve the human species. At a practical level, eugenics in the 20th century involved the removal from the gene pool by various means those classes of individuals considered “inferior stock,” whose deficits had an inherited basis that was immutable for future generations. These classes included those suffering from mental illness, intellectual disability or what was characterized as social diseases (e.g, alcoholism, delinquency).

The broad principles of universal-access medicare contradict those that can be utilized to justify the practice of eugenics. It would be paradoxical for an individual to support both. Yet Tommy Douglas did so with moral persuasion. Careful analysis of this contradiction reveals with hindsight further paradoxes that merit consideration. … read more

Sweden Moves to End Forced Sterilization of Transgender People

Sweden, “one of 17 [countries] in the European Union,” may soon change a law that requires transgendered people to become sexually sterilized if they decide to officially change gender.  Sweden has made moves to repeal the law in January, only to be stopped by the Christian Democrat Party.  However, this party has recently changed their mind, allowing the repeal to go through.

http://motherjones.com/mojo/2012/02/sweden-moves-to-end-forced-sterilization-transgender-people

This move was partially in thanks to an online petition, by AllOut (http://allout.org/en/actions/stop_forced_sterilization), which gained 80,000 international signatures to repeal the law.  However, the date for repealing the law is still pending.

Countries that still require sterilization include France, Italy, Romania, Poland, Greece, and Portugal.  For a map outlining the current status of European sterilization, you can link here: http://motherjones.com/mojo/2012/02/most-european-countries-force-sterilization-transgender-people-map

“Finding Purpose After Living With Delusion”

An article from the New York Times tells the story of Milt Greek, who experiences psychotic delusions to save the world.

So after cleaning the yard around his house — a big job, a gift to his wife — in the coming days he sat down and wrote a letter to the editor of the local newspaper, supporting a noise-pollution ordinance.

Small things, maybe, but Mr. Greek has learned to live with his diagnosis in part by understanding and acting on its underlying messages, and along the way has built something exceptional: a full life, complete with a family and a career.

Greek, and a growing number of others, have looked to their delusions as being rooted in fears, and other psychological wounds, with the goal of recovery through understanding. It’s a process that

Talking to the Absent?

Dr. Adrian M. Owen, a British neuroscientist currently working at the University of Western Ontario, recently presented his research at the University of Alberta.  The research team at UWO, led by Damian Cruse and Adrian M. Owen, claims to have found a way to test for consciousness in patients utterly unresponsive.  Using an fMRI scan to take images of patients’ brains while asking them to imagine certain things (either playing tennis or walking through a house) as a means of responding “yes” or “no” to questions, revealed, according to Dr. Owen, that at least 20% of patients labelled as being in vegetative states are in fact conscious (at least some of the time), but merely unable to communicate with the outside world that they in fact are conscious.  Because the mental states associated with playing tennis are consistently and ubiquitously correlated with a distinctly different part of the brain than mental states associated with spatial location, the UWO team deemed the “tennis-playing” and “house-walking” thoughts to be perfectly suited to code for such distinct responses as affirming or negating something.

The problem with assessing whether or not someone is conscious is that short of asking, all we have at our disposal is diagnoses made based on behavioural outputs (one such output being an affirmative verbal response to the question “are you conscious?”).  However, assessing the level of consciousness of a patient incapable of outward communication of any sort becomes quite difficult.  According to Dr. Owen, 20% of patients previously labelled as being in vegetative states showed signs of consciousness precisely because, thanks to the fMIR scans and the questioning techniques used by the UWO team, they were able to acknowledge their awareness by correctly responding to questions about their personal lives (i.e. questions regarding the names of a parent, the location of their last vacation prior to the accident, etc.).

Such a breakthrough, according to Dr. Owen, could potentially help clinicians make more accurate diagnoses (he cited a current 45% occurrence of misdiagnosis of patients with severe brain damage) and, perhaps even more importantly, it could help shape policies regarding the passive euthanasia of patients like Terri Schiavo.  Here is a New York Times article directly related to Dr. Owen’s research.

There are several questions, in light of Dr. Owen’s research, that come to mind: Is there a problem with passive euthanasia if a patient like Terri could have been asked?  Was there a problem with it (in the case of Terri) regardless of such a possibility?  What if once assessed as conscious and subsequently asked, a patient expressed a wish to be euthanised, but not passively euthanised because of the long and cruel nature of death by starvation and dehydration?  If 20% of patients in Dr. Owen’s study showed signs of consciousness, could there be more?  What should we make of the moral status of individuals who’s mental lives weave in and out of consciousness or consist of some very faint traces of consciousness?  What “amount” of identifiable signs of consciousness is enough?  Is it appropriate at all that consciousness is, as it seems to have become, the moral threshold between life and death?  There are many interesting questions that emerge from this issue more generally as well as the research at UWO more specifically.  For now, as I continue to digest Dr. Owen’s talk, I just pose some of these questions in their raw and unpolished forms, hopefully to get some insightful comments, concerns, other questions, etc., which will certainly aid in my thinking through such issues.

Non-consenting human subjects: victims of eugenics?

Non-Consenting Adults

Carl Elliott on Human Subjects and Big Pharma

from the NYT, July 28th, an Op-Ed piece by bioethicist Carl Elliott:

LAST month, the Archives of Internal Medicine published a scathing reassessment of a 12-year-old research study of Neurontin, a seizure drug made by Pfizer. The study, which had included more than 2,700 subjects and was carried out by Parke-Davis (now part of Pfizer), was notable for how poorly it was conducted. The investigators were inexperienced and untrained, and the design of the study was so flawed it generated few if any useful conclusions. Even more alarming, 11 patients in the study died and 73 more experienced “serious adverse events.” Yet there have been few headlines, no demands for sanctions or apologies, no national bioethics commissions pledging to investigate. Why not?

Here is the complete article.