A voice for Annie and children with trisomy

Barbara Farlow has emailed to inform us about a recent publication in Pediatrics which gives a voice to parents and their children, like Annie, who have trisomy 13/18. Here are a few related links:

The news release from the University of Montreal: http://www.nouvelles.umontreal.ca/udem-news/news/20120723-children-with-trisomy-13-and-18-and-their-families-are-happy.html
Journal Abstract: http://pediatrics.aappublications.org/content/early/2012/07/18/peds.2012-0151.abstract

Canadian Press Article (Helen Branswell): http://www.globalnews.ca/canada/health/parents+of+babies+born+with+disabling+anomalies+report+they+enrich+families/6442684259/story.html 

Reuters: http://www.reuters.com/article/2012/07/23/us-parents-doctors-kids-clash-idUSBRE86M02O20120723

And a few videos about children with trisomy:

Mieko: http://www.youtube.com/watch?v=cteTcuI-xYI
99 Balloons:http://www.youtube.com/watch?v=th6Njr-qkq0

Rick Santorum and prenatal screening

For those that missed the controversy, towards the end of February Rick Santorum (current candidate for the Republican presidential leadership bid) argued that,  ” a lot of prenatal tests are done to identify deformities in utero, and the customary procedure is to encourage abortions.” His argument was roughly as follows: since prenatal screening leads to an increase in abortions, and since abortion is morally reprehensible, the morality of prenatal screening should also be considered. He was also, however, making the point that prenatal screening leads to a new form of eugenics — one that targets a fetus which exhibits abnormalities and deformities which are deemed undesirable. These arguments set off a firestorm of controversy.

Emily Rapp wrote a reply, “Rick Santorum, Meet my Son”, in which she claims that if she had determined that her son would have been born with Tay-Sachs (as he was), that she would have chose to abort her fetus.

 If I had known Ronan had Tay-Sachs (I met with two genetic counselors and had every standard prenatal test available to me, including the one for Tay-Sachs, which did not detect my rare mutation, and therefore I waived the test at my CVS procedure), I would have found out what the disease meant for my then unborn child; I would have talked to parents who are raising (and burying) children with this disease, and then I would have had an abortion. Without question and without regret, although this would have been a different kind of loss to mourn and would by no means have been a cavalier or uncomplicated, heartless decision.

But it seems like both sides are talking passed each-other a bit here. It seems necessary to recognize the potential dangers for a form of newgenics — something that can be informed by our understanding of the history of eugenics, and the ways in which new technologies can reassert these tendencies. But it also seems necessary to recognize the potential value of pre-natal screening technologies, and to recognize the very real pain that diseases like Tay-Sachs impart on the child.

Chromosome 18 Registry & Research Society

Thanks to Velvet Martin who has informed us of Chromosome 18, an organization dedicated to the advocacy of individuals with chromosome 18 abnormalities in an effort to help them “overcome the obstacles they face so they might lead happy, healthy and productive lives.”

More information on the organization can be found at their website. And here’s a video introducing the registry.

Perilous Relations: Bioaesthetics and Eugenics

Some might be interested in a conference session being held in Sydney, Australia this year titled Perlous Relations: Bioaesthetics and Eugenics. The session, which takes place July 12-14, will be part of the Together<>Apart conference—a conference which focuses “on the very broad idea of relations and relationships as well as allied terms such as collaborations, networks and partnerships.”

More about the conference can be found here.

And the abstract for the Perilous Relations session can be found after the break. 

A reply to Allen Buchanan on Cognitive Enhancement

The interview with Allen Buchanan has spawned numerous discussions throughout the web, including Brendan Foht’s response. In it, Foht looks to address Buchanan’s claim that the nature of our evolution in some sense justifies cognitive enhancement, and the existence of other technologies.

It is strange that Buchanan thinks that opponents of genetic engineering who find something worth preserving in our nature must believe that evolution is analogous to some sort of “master engineer.” Considering that evolution is a slow process by which biological order spontaneously emerges from highly complex networks of highly conserved genes, there would seem to be an obvious analogy for it in the conservative view of society.

Another article on the topic by Allen Buchanan can be found here. And you can watch a lecture by Buchanan through Youtube, titled “Using Biotechnology to enhance normal humans: Why nature isn’t good enough.” 

“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

“Why Cognitive Enhancement is in Your Future (and Your Past)”

For those interested in transhumanism, cognitive enhancement, and the potential ethical problems that follow, this interview with Duke Philosophy Professor Allen Buchanan might be of interest. Buchanan has written extensively on the ethical implications of human enhancement, notably in his book Better than Human, and has argued forcefully in favour of pursuing cognitive enhancements.

Buchanan disagrees with critics who suggest that cognitive enhancement should not be pursued, in part, because it’s antithetical to human nature. In fact, he argues that the desire to improve our capacities, and our ability to do so, constitutes an important part of our nature.

I think that any appeal to the notion of human nature, on either side of the enhancement debate, is tricky and problematic and has to be handled with care. Yes, in one sense we might say that it’s part of human nature to strive to improve our capacities. Humans have done this in the past by developing literacy and numeracy, and the institutions of science, and more recently we’ve done it with computers and the Internet. So, yes, if an alien were looking at humanity and asking “What is human nature?” one of the ingredients is going to be that these beings seem quite concerned with improving their capacities and they seem to have a knack for doing it.

Check out the complete, and lengthy, interview for more discussions on this topic, the films Gattaca and Limitless, the potential to exacerbate social inequalities, and other ethical debates surrounding cognitive enhancement.

University of Alberta International Week

For those in Edmonton, some of the events at the University of Alberta International Week may be of interest. On February 3, the event will be hosting numerous presentations and discussions related to “Women, Decision-Making, and Development.”  Janet Keeping will be giving a talk on “The Ethics of Complacency” at 9am, and “Bill 44: Democratic or Dangerous?” at 3pm. Mahvish Parvez and Sabrina Atwal will also be talking about “Son Preference: Implications on the Status of Women” at 1pm. These are just a few of the many interesting talks and events being held. Click through to the web page to get a full listing of events.

“I Had Asperger Syndrome. Briefly.”

An interesting Op-ed from the New York Times titled “I had Asperger Syndrome. Briefly” explores the process, and history, of asperger syndrome. Benjamin Nugent writes,

The general idea with a psychological diagnosis is that it applies when the tendencies involved inhibit a person’s ability to experience a happy, normal life. And in my case, the tendencies seemed to do just that. My high school G.P.A. would have been higher if I had been less intensely focused on books and music. If I had been well-rounded enough to attain basic competence at a few sports, I wouldn’t have provoked rage and contempt in other kids during gym and recess.

Forced Sterilization for Transgender People in Sweden

An article at Mother Jones looks into an obscure Swedish law that requires those who want to legally change their gender to first get divorced and sterilized. The article uses this law to transition to a discussion on the long history of eugenic practice and sterilization in Sweden — a practice that surprises many, considering the general impression of Sweden as a bastion for liberal ideals and equality.

Sweden is considered extremely gay-friendly, with one of the highest rates of popular support for same-sex marriage, and more than half the population supports gay adoption. Arguing that the current law is both unpopular and abusive, the country’s moderate and liberal parties want to see it repealed. In response, the small but powerful Christian Democrat party formed a coalition with other right-of-center parties to join in upholding the requirement for sterilization. End result: a proposal for new legislation that allows trans—a preferred term for many people who undergo gender reassignment—to be married but continues to force them to be sterilized.

Head on over to Mother Jones to give it a read. Also check out another article about the same story in the Swedish press.

 

 

Ugliness as a disability?

A bit of an oldie, but interesting nonetheless: Economist Daniel S. Hamermesh, author of Beauty Pays, makes the argument in an Op-Ed for the New York Times that ugliness should be considered as a form of disability, with compensation available to the very ugliest people of society.  He makes the case that being ugly results in significant social impairment; that is, the ugliest people tend to make less money and be less successful due, primarily, to their looks. As a result, people should either be compensated, or legislation should be put in place which, in effect, would represent affirmative action for the ugliest people of society.

Economic arguments for protecting the ugly are as strong as those for protecting some groups currently covered by legislation. So why not go ahead and expand protection to the looks-challenged? There’s one legitimate concern. With increasingly tight limits on government resources, expanding rights to yet another protected group would reduce protection for groups that have commanded our legislative and other attention for over 50 years.

Is ugliness really a disability? If it is, what does this mean about the concept “disability”? Is it primarily a social construction — a result of social stigma?

Defining Autism

The New York Times recently published an article on the medical debate over the definition of autism — whether it has been defined too loosely, and needs to be narrowed. The article  explores some of the potential consequences that the outcome of this debate could have, and looks to the anger and fear that has been generated amongst many parents with children currently defined as autistic. Amy Harmon writes,

A study reported on Thursday found that proposed revisions to theAmerican Psychiatric Association’s definition would exclude about three-quarters of those now diagnosed with milder forms of autism called Asperger syndrome or “pervasive developmental disorder, not otherwise specified,” also known as P.D.D.-N.O.S. These are people who have difficulties with social interaction but do not share the most severe impairments of children with classic autism.

Some parents fear that children deemed “on the edge” of autism will have their treatment options limited with the proposed narrowing of the definition. In contrast, some parents with severely autistic children support narrowing the definition.

“Everyone on the spectrum benefits when money and services available are applied more specifically and appropriately to the individual needs of each person affected,” said Mark L. Olson, of Henderson, Nev., whose daughter, 16, does not speak. Mr. Olson has argued on hisblog that those with more severe needs have been overshadowed by people with the Asperger diagnosis, who have typical intelligence and language development.

The article goes on to discuss the implications that labelling a child with ‘autism’ has on that child. On the one hand, it often opens up the opportunity for treatment, while on the other, the child is deemed abnormal.

Tomorrow’s Children

Some might be interested in the film Tomorrow’s Children (called ‘The Unborn’ in Britain) which was released in 1934, and can be downloaded free of charge at the Internet Archive. It offers a commentary on the American Eugenics movement prior to the horrors of Nazi eugenic policy which was introduced later in the decade. IMDB provides a brief synopsis:

A young woman wishes to marry her boyfriend and raise a family, but because her own family has been deemed “defective” by the state health authorities–her parents are lazy alcoholics who continue to have children, and her siblings(brothers here) are crippled, have mental problems or are jailed–she is ordered by a court to undergo sterilization so that her family’s “defective genes” won’t be passed on to any more children. Her boyfriend and a kindly priest desperately search for a way to stop the forced sterilization before it’s too late.

Has anyone had a chance to see this movie? Also, thanks to Velvet Martin for the heads up.

Anderson Cooper 360 segment on forced sterilization

On December 27, Anderson Cooper 360 had a segment dedicated to the history of forced sterilization in the United States. Click through to watch the video.

Conference Call for Papers: Human & Machine: Posthumanism in Technology, Culture, and the Arts

This might be of interest to some people:

The Ewha Trans-Humanities Research Team will host an international
conference on “Human & Machine: Posthumanism in Technology, Culture
and the Arts” from June 1st to 2nd, 2012 and invites suitable
contributions for presentation at the conference..

Genetic engineering and digital technology are more than just
supplement of human intellectual and physical ability; they seem to
bring fundamental changes to the nature of what it means to be human.
Such changes have been seen in how philosophy, literature, art,
technology and cultural discourse view the issue of individual and
group identities, the nature of human characteristics, the meaning of
life, the status of humans in nature and other relevant issues taken
from ethical and political perspectives. In this conference, the
subject of humans and technology, both of which are represented in the
debate on posthumanism, will be deeply discussed from a
multidisciplinary perspective focusing on the topics of: Human Body
Transformation in Science, Technology, and Art; Ethical Issues on
Human Enhancement; Representations of Posthumans in Popular Culture;
and Posthumanistic Impact on Human Ontology.

The conference poses the question as to whether or not technology has
influenced the perspective of being human and the nature of humanity
itself. The conference examine the aspects of the human body that have
been transformed through technology and their significance: How have
physical transformations through prostheses, implants, genetic
engineering, and organ transplants influenced human identity? How are
the ethical issues, that such transformations generate, demonstrated
in the arts? Given the phenomenon that human beings can reconstruct
themselves with machines as well as utilize machines, what is the
meaning of post-human embedded within the interaction between
human-like robots and human beings, or the combination of technology
and human-beings? These questions are to be discussed in the
conference.

Human enhancement and transformation technology, which cutting edge
technology will make possible, demand our serious consideration since
the diverse aspects of being human in the future rely on a variety of
ethical and political issues including the rationality and validity of
the application of such technologies. The conference endeavors to find
answers to the fundamental questions of how to define what is the norm
in the nature of being human, and what natural rights for human beings
are, followed by which values are to be respected in the era of
cutting edge technology.

Furthermore, the conference examines aspects of representations of
posthumans like human clones, androids, cyborgs and aliens which
depict new forms of human beings, through the image of the future
presented in popular culture such as SF movies, animations, SF novels,
music videos and TV commercials. And also, there will be a discussion
of public awareness on the notions of naturalness, otherness, class,
utopia and dystopia related with such popular culture.
As human beings attain the ability and skill to reconstruct their
bodies through substitution, the boundaries between the human body and
its image, the lines between what is artificial and what is natural,
and the distinctions between nature and culture disappear. This
phenomenon raises various ontological issues regarding the
relationships of the real body and the virtual body, life and
lifelessness, and the subject and its surroundings or ‘others’.
Posthumanism pursues, on one hand, a liberal and post-ideological
relativism, but on the other hand, it tends to combine with the
critical theories, materialism and feminism. How can individual
transhumans and posthumans be positioned in social systems and
relations? Indeed, do human beings have the freedom to choose a body
for themselves? If so, how and where can we apply our enhanced
abilities? To what extent can it be considered an individual matter or
a social and political matter? Through posing the issues and problems
on modern anthropocentricism, this conference reconsiders the human
ontology that is constantly changing and being reconstructed rather
than the one that is defined by identity in the nature of
transcendental property.

A tentative schedule of the conference is as follows:

June 1st
Session 1: Human Body Transformation in Science, Technology, and Art
Session 2: Ethical Issues on Human Enhancement
Roundtable Discussions: all speakers and discussants will participate in

June 2nd
Session 3: Representations of Posthumans in Popular Culture
Session 4: Posthumanistic Impact on Human Ontology
Roundtable Discussions: all speakers and discussants will participate in

Confirmed Speakers include Julian Savulescu (Oxford University), Dónal
O’Mathúna (Dublin City University), Michael Hauskeller (University of
Exeter), Thomas Philbeck (NYIT), Stefan Sorgner (Universität
Erlangen-Nürnberg),  and Jens Eder (Johannes Gutenberg University,
Mainz).

If you like to present a paper at the conference, please submit an
abstract of not more than 400 words by 29 February 2012 to Dr.
Eunryung Kim, e-mail: elysak@ewha.ac.kr.

New York Times: “Thousands Sterilized, a State Weighs Restitution.”

Those interested in the history of eugenics and the more recent issue of restitution will want to see the New York Times article on the sterilization program in North Carolina.

Now, along with scores of others selected for state sterilization — among them uneducated young girls who had been raped by older men, poor teenagers from large families, people with epilepsy and those deemed to be too “feeble-minded” to raise children — Mr. Holt is waiting to see what a state that had one of the country’s most aggressive eugenics programs will decide his fertility was worth.

Although North Carolina officially apologized in 2002 and legislators have pressed to compensate victims before, a task force appointed by Gov. Bev Perdue is again wrestling with the state’s obligation to the estimated 7,600 victims of its eugenics program.

The recommendations for compensation by the task force appointed by Gov. Perdue could be influential for other states, thirty-one of which had eugenic programs in place.

The Collective Memory Project

This fall we were lucky enough to have The Collective Memory project on display at Enterprise Square in Edmonton, Alberta. The show was the product of Living Archives on Eugenics in Western Canada’s 2011 intern program, with Anne Pasek operating as curator. The display was described as,

Part art exhibition, part grassroots organizing, the project attempts to bring together academics, activists, artists and community members in acts of remembrance for a history in danger of fading from view. It is by rooting our perspectives in a memory of the past that we sill become better equipped to foresee the challenges of the future. Drawing from Rob WIlson’s definition of collective memory as a cognitive metaphor that crystallizes agency, The Collective Memory Project seeks to engage its public in an exercise of memory as a political act.

The display looked to explore themes of institutionalization, remembrance, and affect, whether in the feeling of alienation and judgment or the emotional pain associated with disability and cognitively different children. Unfortunately the show ends today, but you can check out photos of some of the artwork taken during the launch in October.

Leilani Muir interview on The Current

For those that missed it, Leilani Muir was interviewed last week on CBC’s The Current about her experiences in Red Deer’s Provincial Training Centre and her forced sterilization. You can listen to the interview here. CBC gives the following preview:

She was little girl unloved and unsuspecting when her parents drove her up the hill in Red Deer Alberta. It was a moment that would forever change Leilani Muir’s life, abandoned to people zealously experimenting with eugenics. What they would do to her would result in anguish and eventually lawsuits . Today, Leilani Muir, now in her 60s is ready to tell her story.

A followup to the interview in the form of listener responses and an interview with Heather Pringle, Canadian non-fiction author and journalist, can be found here. Listener responses include the stories of those who worked at the Provincial Training Centre. Another listener questions who, precisely, should be blamed for Leilani’s treatment, arguing that Leilani’s mother is ultimately the one most responsible.

Canada as a model for sterilization compensation

Douglas Wahlsten has emailed to inform us of a publication in the Winston-Salem Journal on the story of Leilani Muir: the court battle (and victory) over wrongful sterilization, compensation, and the numerous cases that followed. Wahlsten explores these as a potential model to be used in cases of sterilization compensation in the United States, while also noting the recent promotion of the Canadian Eugenics’ past with the CURA funded Living Archives Project and the NFB documentary on the Leilani Muir case.

The award for sterilization followed existing rules in Alberta about an upper limit of damages for loss of the ability to have children from injury. Other jurisdictions may have another limit or even no limit at all. Consider the recent case of Evans vs Lorillard, where a man was awarded $152 million because the tobacco giant gave cigarettes to his mother when she was a child, and she became addicted and eventually died of lung cancer.

What would be the award if a woman lost her ability to have children because of a mistake during surgery or an auto accident? It seems this would be a reasonable standard for an award to victims of eugenic sterilization. To give them less implies they do not deserve the same respect as other people. Surely the amount should exceed the $20,000 proposed for victims of eugenics in North Carolina, because having children is a precious thing.

You can find the article here. 

Martin family argues for legal funding at fatality inquiry

An article posted to the St. Albert Gazette explains how the family of a 13-year old foster child, who died shortly after leaving foster care, is seeking funding and payments for a lawyer to represent them in an inquiry into her death. The inquiry is meant to shed light on the girl’s death, with the aim of preventing further foster-care related injury or death.

Samantha Martin died in December 2006 after collapsing from an apparent heart attack. The inquiry is supposed to determine what caused the girl’s cardiac arrest.

Martin lived in foster care for most of her life; she was born with a rare chromosomal disorder and the government insisted the Martin family place her there to receive the necessary medical supports.

Read more here.