Reflections on World Down Syndrome Day 2014

March 21st is World Down Syndrome Day, and 2014 is the ninth year in which it has been held, and the third in which it has been recognized by the United Nations. I want to start this post with an already-widely viewed video from CoorDown that has been up for less than a week, and step back from there.  The video is called “DEAR FUTURE MOM”:

At the time of writing, this video had been viewed over 1.6 million times in 6 days, with over 500 comments on it.  It’s clearly designed to be emotional and to directly send a number of messages, including at least these: anxieties about having a child with Down syndrome are understandable but overblown; children with Down syndrome will likely bring much joy and richness to the lives of any family they are in, and particularly to mothers; and Down syndrome does not obliterate or subhumanize the person who has it.

The need for those messages, and perhaps others, to be sent, loud and clear, is grounded in the sad fact that parental fears associated with potentially having a child who will have Down syndrome are amongst the highest risk factors for people with Down syndrome.  This is because

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

 

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/

 

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)

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

Follow up on Hidden Ultrasound Results

On April 18, 2012, I posted an article from the Toronto Star, detailing how hospitals in the GTA have been telling their staff to stop telling the sex of a fetus from an ultrasound to parents, in order to prevent gender-based abortions.  Recently, the CBC used “hidden cameras” in order to explore the state of the situation in private ultrasound clinics across Canada.  Their discoveries are detailed in the article below.

http://www.cbc.ca/news/health/story/2012/06/12/ultrasound-gender-testing.html

Gender testing is very prevalent in private clinics, and further, Canada offers no law preventing clinics from sharing gender with parents before the 20 week mark (after which most doctors will not provide abortions), unlike China, India, and the UK.  The US recently tried to pass a similar law, but the proposal fell through, as it was determined to be impossible to prove why parents would request gender.

The article suggests that further education would be greatly beneficial to parents on the value of both female and male children.

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.”

Genetic counseling for the politically committed

h/t Anne Pasek

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:

Call for Submissions – The Collective Memory Project: Responses to Eugenics in Alberta

Pasted below is the text from this call for submissions for an art exhibit to be held in Edmonton and to run from late October through November of this year.

Anne Pasek, the principal force behind this initiative, is an intern on the Living Archives project this summer. As part of her internship, and with support from several other interns, she has arranged for the upcoming exhibition.

Please circulate this call for submissions, and be sure to attend the exhibition later this year. Also, note the pre-exhibit workshops being held the last Tuesday of July, August, and September, as you may be interested in attending some or all of these as well.

Call for Submissions
The Collective Memory Project:
Responses to Eugenics in Alberta

Artists and community members are invited to submit artwork to a forthcoming exhibition addressing the legacy and future inheritance of eugenic ideas in Alberta. Exploring forgotten narratives, lost histories, and contemporary anxieties, The Collective Memory Project will investigate and make visible the process through which personhood is unequally distributed in society.

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

Disability Rights and Women’s Rights – Petition

 

http://www.generations-ahead.org/resources/the-unnecessary-opposition-of-rights

You may want to consider supporting this statement and sign on:

Letter / Call to Action

Robert Edwards, Virginia Ironside, and the Unnecessary Opposition of Rights

Please feel free to show your support and sign on to this statement below.

As people committed to both disability rights and reproductive rights, we believe that respecting women and families in their reproductive decisions requires simultaneously challenging discriminatory attitudes toward people with disabilities. We refuse to accept the bifurcation of women’s rights from disability rights, or the belief that protecting reproductive rights requires accepting ableist assumptions about the supposed tragedy of disability. On the contrary, we assert that reproductive rights includes attention to disability rights, and that disability rights requires attention to human rights, including reproductive rights.

We offer the following statement in response to two recent events that promote eugenic reproductive decision-making, and that further stigmatize disabled people by presenting disability exclusively in terms of suffering and hardship. Although seemingly disparate events, they share the presumption that disability renders a life not worth living and that people with disabilities are a burden on society. Moreover, they seem to imply that the only appropriate response to disability is elimination, thereby limiting women’s reproductive choices; they suggest that all women must either abort fetuses with disabilities or use IVF to de-select for disability.

The awarding of the 2010 Nobel Prize for medicine to Dr. Robert Edwards demands a more considered response. He has made no secret about promoting reproductive technologies to prevent the birth of disabled children, arguing that it would be a “sin of parents to have a child that carries the heavy burden of genetic disease. We are entering a world where we have to consider the quality of our children.” We protest any recognition of Dr. Edwards that also fails to acknowledge his discriminatory statements, and we dispute the notion that his political views should be isolated from his medical accomplishments. It is precisely this separation that pits reproductive rights against disability rights.

Edwards’ work has assisted in the birth of four million babies worldwide and has helped single people, people struggling with infertility, and gays, lesbians and transgender people to have biologically related children.

However, we can celebrate Edwards’ accomplishments and also call out his controversial advocacy against disability. In the same way that most of the articles celebrating his achievements acknowledge the religious and ethical controversies of his techniques, we can recognize his problematic disparagement of disability. The role he has played in increasing the reproductive options for women and families does not need to be justified or substantiated by arguing for an elimination of disability. It can be marked as an important reproductive option and means of creating families without denigrating disability or people with disabilities.

We also protest any use of disability by anti-abortionists in their criticism of Edwards and his work in developing assisted reproductive technologies. Many people with disabilities have used such technologies in creating their own families and recognize that IVF has made their families possible. Although we share the concern that women and families do not always have the information they need to make reproductive decisions about disability, and that stereotypes about disability persist, we do not think the response to that situation is to oppose assisted reproductive technologies or limit women’s rights.

The recent statements by British advice columnist Virginia Ironside about the “suffering” of disabled children similarly require a challenge from disability and reproductive rights supporters. In arguing for the right to abortion, Ironside stated that knowingly giving birth to a child with disabilities is cruel, and that in such cases abortion is the “moral and unselfish” response. She added that if she had a sick or disabled child, she would not hesitate to “put a pillow over its face,” as would “any loving mother.” Although Ironside’s comments about infanticide have been rightly condemned, her assertion that abortion is the only proper response to disability has prompted little controversy, as has her assumption that advocacy for abortion rights requires accepting the construction of disability as unrelenting tragedy. As reproductive rights advocates who are committed to disability rights, we refuse to accept the rhetorical use of disability as an argument for abortion rights. Reproductive rights demands not only access to abortion but also the right to have children, including children with disabilities, access to information about parenting, and the social and economic supports to parent all children with dignity.

In other words, we hold both disability rights and reproductive rights together, refusing arguments for women’s reproductive autonomy that deny disability rights, and refusing arguments for the human rights of people with disabilities that deny the right of women and families to make the best reproductive decisions for themselves.

Although our statement is motivated by these events, we recognize that these are only the most recent manifestations of long-standing prejudices against people with disabilities and of the use of disability stereotypes to undermine women’s and families’ reproductive autonomy and access to abortion. We hope, with this statement, to support other activists and scholars who are equally committed to both reproductive rights and disability rights. We hope that as advocates in movements that share similar values around civil and human rights we can continue to speak out against the use of reproductive rights to undermine disability rights and the use of disability rights to undermine reproductive rights. Reproductive rights and disability rights are intertwined.

Download Robert Edwards, Virginia Ironside, and the Unnecessary Opposition of Rights (PDF) http://www.generations-ahead.org/files-for-download/articles/DS-RJ-statement.pdf

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. 

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.

For the Love of Annie

There’s a recent interview with Barb Farlow up at Bloom–Parenting Kids with Disabilities–by Louise Kinross. It starts with the following background information:

When Barb Farlow learned the baby she was carrying had Trisomy 13, her decision to continue the pregnancy “was immediate and innate, and in complete contrast to what I thought I might do,” says the Toronto mother and engineer. She was told the syndrome was lethal, but through online support groups met families whose children were living with Trisomy 13. “It was very important to us that she not suffer unnecessarily, but we wanted to consider any surgical treatments and make ‘best-interest’ decisions for her, like any parent.”

Barb’s daughter Annie (above) was born without the brain and heart defects common in Trisomy 13, but died at 80 days in 2005 after being rushed to a children’s hospital in respiratory distress. Following her death, Barb acquired Annie’s medical records and learned a “not for intubation” order had been written without consent. “This discovery was like the first domino in a long line of questionable events that left us unclear as to whether our daughter’s death was preventable.” Determined to change what she believes is systemic discrimination against treating children with certain genetic conditions, Barb shares Annie’s story at health-care conferences and ethics talks, with medical and law students, in medical journals and through her work with Patients for Patient Safety Canada.

To read the interview itself, which is informative about how Barb and Annie were treated within the medical establishment, including by medical staff at one of Canada’s leading hospitals for sick children, click here.

What Sorts course

I’ll be teaching a fairly large, mixed grad / undergrad seminar this coming semester as an ethics course with the working title that coincides with the blog: what sorts of people should there be?. Below is an initial draft of the core part of the syllabus. Feedback and suggestions welcome. One feature of the course will be to integrate some of the posts, videos, and commentaries from the What Sorts blog, using them as a basis for further discussion and readings.  If any of you are also making use of some of the resources here or at www.whatsorts.net, let me know by reply here or privately.

Phil 450 / 550
Topics in Ethics
What sorts of people should there be?

Themes, readings, etc.

Course guide description:

This course will be organized around the question “What sorts of people should there be?” and will focus on philosophical issues that arise in several areas at the interface of ethics, science, and technology. Topics that I would imagine covering including most, if not all, of the following: autonomy and personal choice concerning one’s appearance, health, and well-being; choices and responsibilities for one’s own possible and actual children; social policies and common practices regarding future generations, including genetic testing and screening; philosophical and medical views of disability and disablement; bioenhancement and transhumanism; the moral value of human and non-human lives; the nature of persons and the philosophical focus on questions about persons.

Cognitive Disability and its Challenge to Moral Philosophy

Readers of the blog who followed our Thinking in Action series of blog posts on the above-named conference, held in New York in September 2008, as well as others, might be interested in having a look at the finished papers from that conference. They have now been published in a special issue of the journal Metaphilosophy (which strikes me, at least, as a strange venue). The table of contents is below and from here you can link to the abstracts for each of the papers; for the full versions, you need an individual or institutional subscription, it seems. To see some videoclips from the conference, together with critical commentary, check out the Thinking in Action posts themselves; nearly all of these directly discuss the talks at the conference corresponding to some of the papers listed below. The videos are both closed captioned and have transcripts with them to enhance accessibility.

thanks to shortintro for the blog comment that drew this to our attention.

**********

ARTICLES

INTRODUCTION: RETHINKING PHILOSOPHICAL PRESUMPTIONS IN LIGHT OF COGNITIVE DISABILITY (p 307-330)
LICIA CARLSON, EVA FEDER KITTAY
Published Online: Sep 18 2009 11:37AM
DOI: 10.1111/j.1467-9973.2009.01609.x

Abstract | References | Full Text: HTML, PDF (Size: 161K)
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