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

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!

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

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

Continue reading

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.

Continue reading

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 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

Continue reading

Huntington Society of Canada Conference 2010

I know this is a bit short notice, but the Huntington’s Society of Canada is hosting their annual conference in Edmonton. Starting today (Thursday) at 7:30 pm at the Sutton Place Hotel, the conference will attempt to highlight both the current research around Huntington disease and the lived experience of those with Huntington. Continue reading

Health Ethics Seminar on November 19, 2010

For your information.


Ethical Challenges at the Beginning of Life: 3 Recent Cases Involving Newborns with Serious Genetic Disorders

Anna C. Zadunayski, LLB
Clinical Ethicist
Alberta Children’s Hospital
Alberta Health Services
Calgary & South Zone
Friday, 19 November 2010 12:00—12:45pm
Room 2-07 Heritage Medical Research Centre
Available via Telehealth by contacting 780-492-6676 or dossetor.centre@ualberta.ca or your local provider at least 2 business days prior to the event
For more information, please call 780-492-6676 or visit
www.ualberta.ca/BIOETHICS/
Abstract follows

Living Archives: Inaugural Events

The 5-year project, Living Archives on Eugenics in Western Canada will launch its public face with some inaugural events in Edmonton at the end of this week.  All events are free and open to the public, and we welcome community and university members, individuals and organizations.

We start on Friday 22nd October, 2010, with a keynote address by Professor Douglas Wahlsten at the Telus Centre on the campus of the University of Alberta, at 7pm, entitled “Eugenics in Alberta: Science and Politics”.  The talk is in Room 150, doors open at 6:30 and a reception will follow.

Events on Saturday October 23, 2010 take place on the lower floor of the Stanley Milner Library located opposite Churchill Square in Edmonton.  We will be downstairs in the Edmonton Room, with coffee and snacks available at 9.45am and the first session starting at 10.00am.  Members of the public are also welcome to attend a short meeting of the governing board, which will begin at 9.00am in the same location.  The Saturday events include:

  • Dick Sobsey & Heidi Janz “Picturing Eugenics: Telling the Story of Eugenics Through Alternative Communication”
  • Erika Dyck, “Building a People’s History of Eugenics: Archives Past and Present”
  • Gregor Wolbring, “Dynamics Around Eugenic Acceptance and Rejection: Lesson for the Future”
  • Claudia Malacrida, “Creating an Oral History of Eugenics Questions of Scope, Ethics and Access”

To register for the free lunch or request disability accommodations, please contact moyra@ualberta.ca or register directly at http://www.whatsorts.net/register/.  You can also get updated information at http://www.whatsorts.net 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.

Continue reading

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? Continue reading

Human Genome at 10

It has now been 10 years since the the announcement that the mapping of the human genome was complete. There is little doubt that this was an incredible and conceptually significant scientific accomplishment. The project, however, has so far been almost a complete failure in achievement or even meaningful progress toward its primary stated goal, to make rapid and substantial headway in preventing, diagnosing,  and treating human disease as a result of our new knowledge. Continue reading

Parenting, testing, disability, autism

In a recent comment on an older post of Kristina Chew’s, “Eugenics, Fear, and Pain” over at Change.org, one parent says:

I found out three days ago both of my children are positive for the PTEN mutation. There is a link between PTEN and autism. I think it’s that one in every 5 people with the mutation have autism–very strong odds. I opted for genetic testing with my son. The triple screen came back very abnormal. He had 1:6 odds of Down Syndrome. I opted out of an amnio. I’m glad I did because he did not have Down’s and I’m unsure they could have told me if he had the PTEN mutation. Since only 1 in 250,000 people have this mutation I highly doubt he would have been checked for it. I didn’t know I had the mutation until 2007 even though I had every sign there is–just no name. We did not do genetic testing with our daughter. I guess the point of this is sometimes problems exist that aren’t detected. No one is guaranteed what society sees as a “perfect” child. My daughter was placed on the PDD spectrum before her second birthday. We didn’t understand the link at the time as this was around the same time as my PTEN diagnosis. She’s so beautiful and smart. The only problem is reaching her through language sometimes but intervention is changing that. Last night she was speaking to me quickly as she does and I didn’t understand her. I slowed her down and BOOM there was meaning. It’s frustrating for her in not being able to get her point across easily but she’s making great strides.

I just cannot fathom anyone not thinking my child’s life is worth it. As someone who has been through 24 operations and 3 diagnoses of cancer by age 30, my quality of life hasn’t been the greatest. My own father once said if he had known what I would go through he wouldn’t be sure he and mom would have had me. I cannot begin to explain how painful that was. Continue reading

The incidentalome and the genome

For those of you who have been concerned about the implications of the human genome and the emergence of the human metabolome, there is another strange new creature born of modern science and  roaming our planet, the incidentalome. The incidentalome is a bizarre creature without clearly defined shape or form but it is not certainly not mythical. Kohane, and others have described the incidentalome as the universe of all possible incidental findings. While this universe of possibilities is not new, its boundaries are rapidly expanding as diagnostic procedures have evolved substantially. Continue reading

Gene identified as cause of intellectual disability

The gene is called TRAPPC9. Its mutations cause up to 50% of intellectual disabilities worldwide, says Dr. John B. Vincent of the Center of Addiction and Mental Health. The way his team identified the gene disturbs me. They studied genes of a large family from Pakistan that had at least seven members with non-syndromic intellectual disability and another from Iran. Because “researchers and families themselves have long suspected an inherited factor, based on patterns observed in extended families.” Dr. Vincent says, “This spotlights the intense interest that genetics is bringing to types of inherited intellectual disability that, to date, have been poorly understood.” He is talking about “devising potential therapeutic strategies,” too.

http://www.medicalnewstoday.com/articles/174204.php

This all sounds so familier. The Kallikak family…..the Duke family……Buck V. Bell……..  So it’s coming back, after all?

Modern Pursuit: Discussion

The final captioned videos from The Modern Pursuit of Human Perfection: questions from audience members, and responses from the panel. Questions from Rob Wilson, Michael Shaw, Anna Macquarrie, and Bruce Uditsky on vulnerability and trust in medicine, the disconnect with disability in medicine, ways in which parenthood is denied in contemporary society, the absence of true choice in many medical situations, and the systematic devaluation of people with disabilities are all discussed. And all with closed captioning. Enjoy

Connecting with others

Vulnerability, trust, and confrontation

Good people in medicine and the disconnect

The denial of parenthood and selective abortion

Going underground and true choice

Disability, individual autonomy, and systematic devaluation

For the full story, see this previous post.

Parents in Hospital Lawsuit Offer Deal

from the National Post, by Joseph Brean, June 23rd, 2009. [NB: this doesn’t fit completely with my own understanding of the case]

TORONTO – The small claims court lawsuit over the controversial 2005 death in infancy of Annie Farlow at Toronto’s Hospital for Sick Children was thrown into confusion yesterday when her parents, citing a “change of position,” dropped their opposition to a full-fledged Superior Court trial, but requested to be immune from any future order to pay the hospital’s costs, and offered to drop the case in exchange for a meeting with top hospital administrators.

Timothy Farlow told Judge Thea Herman that a number of recent events have convinced him and his wife, Barbara, that the systemic problems they believe led to Annie’s death at age three months, after complications from the genetic disorder Trisomy 13, have been largely resolved, and their goal of effecting change has been achieved.

The Farlows are suing Sick Kids and two doctors for $10,000, the maximum small claim, over alleged negligence and malpractice. Sick Kids and the two defendant doctors, pediatrician Dr. Michael Weinstein and critical care specialist Dr. Christopher Parshuram, are not seeking costs from the Farlows over their current motion to elevate the case into Superior Court. But Judge Herman said she is likely powerless to prohibit some future trial judge from ordering the Farlows to pay costs.

Read the full story here. For more on the broader context of the story, see the Justice for Annie Facebook group or search the What Sorts Blog.

Vehmas and Sobsey commentaries: now captioned

Below are the short commentaries–now closed captioned–delivered by Professors Simo Vehmas and Dick Sobsey as part of a panel discussion on the theme The Modern Pursuit of Human Perfection: Defining Who is Worthy of  Life.

Bioethical Reflections on Disability, Medicine, and Family Life (Simo Vehmas)

Decisions and Dishonesty in Medicine (Dick Sobsey)

Simo is one of Finland’s leading bioethicists who joined us for the panel discussion, while Dick is one of the world’s authorities on violence and disability and runs the ICAD blog.  The short panel presentations that are the basis for these commentaries–by Wendy Macdonald, Sam Sansalone, and Colleen Campbell–can be heard and viewed (now that they are also closed captioned)–in this post, which also contains more information about the event as a whole.  These should be useful to some of you for teaching, for community discussion, or just for private reflection on the ways in which eugenic or newgenic thinking can be found immersed in ongoing medical practices and cultures surrounding the treatment of people with disabilities.

Next up: the audience-panel interactions, which I’ll post in the next week.