Call for Support – Rally May 15 from Noon – 1 pm

42 million in cuts to services for the disabled in Alberta!

Over the past several months you may have been aware that Persons with Developmental Disabilities (PDD) has been directed, along with many other social programs, to make arrangements for budget cuts. These cutbacks are happening alongside an effort by PDD to better regulate funding models for people. These changes, unfortunately, make what we need to present at this time more complicated. Administrative changes around assessing support needs is co-mingled with the severe funding cutbacks being experienced across the province of Alberta.

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.”

Pride Week Panel on Reproductive Autonomy: Control of Sexuality

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

Pride Week Eugenics Panel Poster

Pride Week Eugenics Panel Text

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

Genetic counseling for the politically committed

h/t Anne Pasek

Shades of Personhood: A Worry About Definitions of Death for Transplant Purposes

Although brain death, which is an “irreversible cessation of all the functions of the brain, including the brain stem” (see article), has been used as a pretty safe definition of a person’s death, transplant advocates are calling to revive a different definition of death, namely cardiac death or circulatory death, which is “an irreversible cessation of circulation and heartbeat and breathing” (see article).  In such cases, CPR is not performed and after a short wait, organs are removed.  However, the problem is that there is no guarantee that the heart won’t restart by itself, so the question of how long to wait becomes a tricky one.  Some hospitals wait five minutes while others only two.  The trouble with waiting too long is that organs cut off from a nourishing blood supply cannot last very long.  Surgeons in Michigan are starting to place donors on ECMOs (heart-lung machines) even before the donor’s heart stops beating.  This ensures that the organs are not deprived of nourishment, but it also further blurs the line between life and death.

The Michigan doctors say the approach is a blessing. Family members have more time to say goodbye and a chance at getting some solace from their loss.  “They are so pleased that the last act of the person’s life on Earth was to donate organs and save other people’s lives,” Punch said.  Transplant surgeons say the chance to turn a death into an opportunity for life is a godsend. (See article)

Defining death is not as straight forward as it might seem.  Of course, there are certainly clear cut cases.  Taking a stroll through a cemetery reveals hundreds such cases.  However, the moment that marks the exact boundary between life and death is much harder to define.  Perhaps this is because there is no such moment, death being a process of a certain duration.  Technological advancements such as ECMOs, however, can extend this process far beyond the short period it would normally take.  Are such patients essentially in a state of dying, but not really dead or are they essentially alive due to the fact that the process of dying had been interrupted by the machines?

Just because machines are doing the breathing does not mean that the person is dead.  By that definition, artificial hearts or pace makers would make the people who have them into walking corpses.  Also, just because someone is in a coma, does not mean that they are ready to be harvested for organs.  Perhaps an argument for the practice of recirculating blood in order to keep organs nourished hangs on the irreversibility of the donor’s condition.  But again, not only is “irreversibility” not a certainty in all cases, but irreversibility itself does not seem to be reason enough to harvest organs from a living human being.  We don’t generally think that extracting organs from patients in permanent vegetative states is permissible, even if such states are by definition irreversible and if such patients happen to be organ donors.

This is certainly a tricky question, especially since the patients involved are donors who have agreed to donate their organs after they die, but unless their advance directives state that organs are to be extracted while alive as long as it happens at the discretion of the doctors or family, the problem with the definition of death will continue to be an issue.  Citing the number of lives that can be saved by the practice of extracting organs from a living person (even if irreversibly damaged), should not be used as an argument for such a practice particularly since the same argument can apply to extracting organs from any living person (I have in mind the classic objection to utilitarianism here).

I am not entertaining slippery slope worries, but I think that it is important to stress that the subtle details regarding our practices of extracting organs for transplantation should be thoughtfully considered, reasoned through, and explained.  One moral worry I have is that such patients may not be viewed as persons by doctors eagerly waiting to extract vital organs in order to save the lives of other (more obvious?) persons.  Can what the Michigan doctors are doing be done with a genuine air of respect and dignity that is owed to persons?  Perhaps it can, but the reasons for such practices must reflect this respect and dignity.  I am simply not convinced that, at least in all cases, merely focusing on what the family and other patients get out of it constitutes reasons that are saturated with genuine respect for the personhood of the donor.

What Sorts of People Should There Be? Do the Deceased Qualify?

When the Social Security Act was being written by Congress in 1939, no one thought that it might be possible to conceive a child posthumously.  In 2003, 18 months after the death of her husband, Karen Capato, a Florida resident, gave birth to his (her husband’s) twins (see article).  Robert, Karen’s husband, preserved his sperm in a sperm bank and gave written consent for its use by his wife before he died.

After her husband’s death, Karen applied for social security survivor benefits for the twins, but was denied because Florida laws recognize the eligibility of inheriting property only if the children who are to inherit property are named in a last will and testament.  This apparently also translates into an ineligibility of the twins to receive survivor benefits.  Robert could not have written the twins into his will because he did not know that they were going to exist at some point in the future.  Regardless of whether or not he discussed possibilities with his wife, he had no way of knowing the genders or the number of children he would father posthumously.

There is, to my mind, a question of whether Karen’s twins can really be called “survivors” since they did not literally survive their father.  And since it was Karen’s own choice to have them after her husband was already dead, perhaps counting on survivor benefits for aid was a tad premature and maybe even irresponsible.  These worries aside, however, it is interesting to live at a time when technological advances create such problems for the legal system.  After all, there is no question regarding biological parentage in this case.  Half of Robert’s DNA had been willingly transferred to a future generation.

While thinking about what sorts of people there should be, we think in terms of human variation.  However, we don’t always stop to consider why a variety of humans are “people” in the first place and what exactly makes them into “people.”  It would be difficult (and likely hopelessly so) to argue that a sperm cell is a person.  And yet, at the time of conception, that was all that remained of Robert.  I would think that it would be absurd to insist that Karen’s twins are essentially fatherless (it is true that their father is dead, but it is not the case that they have not been fathered).  It would be equally absurd to think of the doctors who prepared the fertilized egg as fathers (the medical team has no parental responsibilities toward the twins).  Although the twins were not a result of sexual intercourse between Robert and Karen, their conception is an instance of sexual reproduction (Robert’s and Karen’s genetic material is present in equal proportions in the resulting offspring).  So when asked who their parents are, the twins should refer to Robert and Karen and not just Karen or Karen and the hospital staff or even more absurdly to Karen and Robert’s sperm.  So did Robert father the twins?  I’d say he did!  If that’s the case, then does he qualify to be represented under the general question of what sorts of “people” there should be?  When we think about human variation, do the dead count?  I think they do!  If, by recognizing all kinds of people as “people,” we implicitly assume that we have duties toward them, then by making conceptual space for Robert and other deceased individuals (this also includes all of us at some point), we ought to recognize our duties toward the dead.  Perhaps that should inform the court’s decision in the case of the twins even if they are not literally “survivors.”

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

California’s dark legacy of forced sterilizations

http://www.cnn.com/2012/03/15/health/california-forced-sterilizations/index.html?hpt=hp_c1

Ethicist gets hate mail

A Melbourne academic has triggered an ethical storm by suggesting it is acceptable to kill newborns in so-called after-birth abortions if parents do not want them.

Ethicist Francesca Minerva said yesterday that she had received hate mail since a provocative article she co-wrote with Dr Alberto Giubilini appeared online.

They argued after-birth abortion should be allowed in cases when abortion would be permitted, including if a child had a defect such as Down syndrome.

Even in cases where the baby was born perfectly healthy, parents should have the right to end the life of the child if their own wellbeing was at risk.

The researchers said a newborn baby and a foetus were “morally equivalent” and both were “potential people”.

“If criteria such as the social, psychological and economic costs for potential parents are good enough reasons for having an abortion even when the foetus is healthy…then the same reasons which justify abortion should also justify the killing of the potential person when it is as the stage of a newborn, they said.

Adopting out an unwanted baby was not necessarily a solution because the mother might suffer psychological distress from giving up her child for adoption.

Dr Minerva said the article was not intended for public debate but rather for discussion among bioethicists.

“This debate has been going on for 30 years,” she said.

The BMJ Group said the researchers had been subjected to personal abuse, including threats to their lives.

It said the concept of infanticide was not new and the researchers had made an argument that deserved to be heard without receiving hostile abuse.
Catholic Respect Life executive officer Bronia Karniewicz said the argument that killing a healthy baby rather than putting them up for adoption because it might better benefit the parents was disturbing.

the article can be found here: http://au.news.yahoo.com/thewest/a/-/wa/13056055/ethicist-gets-hate-mail/

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.” 

Gender Stereotyping and Parenthood Dilemmas

In an effort to avoid gender stereotyping, Beck Laxton and partner Kieran Cooper concealed the gender of their son from the world.  The gender neutrally named Sasha has now turned five and is starting school.  Prior to the commencement of formative school years, Sasha has been given the choice to dress in clothes that appealed to him, be they hand-me-downs from an older sister or an older brother.  When Sasha turned five, his parents were forced to reveal his gender, which means that Sasha will have to get used to being perceived as a boy by his peers.  Although the school requires different uniforms for boys and girls, Sasha’s mom is intervening by letting Sasha wear a girl’s blouse with his pants.

Last year, a different couple made a similar decision not to reveal their child’s gender.  Some psychiatric experts voiced their concerns:

“To have a sense of self and personal identity is a critical part of normal healthy development,” Dr. Eugene Beresin, director of training in child and adolescent psychiatry at Massachusetts General Hospital, told ABC News. “This blocks that and sets the child up for bullying, scapegoating and marginalization.”

The article continues:

But as parents well know, bullying is hard for any child to avoid. It’s more important to raise someone who’s confident enough in himself to overcome peer pressure. It’s also important to have his parents have his back.

The question of personal identity is interesting as gender is certainly a big part of it.  However, that’s precisely the problem couples like Beck Laxton and Kieran Cooper are attempting to avoid.  The question of bullying, scapegoating and marginalization is a bit trickier since such actions are certainly a product of dogmatically ingrained gender stereotyping, but they will not cease to exist just because Sasha’s parents have grown past them.  Although bullying may well be hard for any child to avoid, some children do get bullied more than others.  And although Laxton and Cooper are trying to inculcate a sense of self and others in Sasha, which they hope will be lacking gender stereotyping, are they also not sacrificing their child’s emotional and physical safety by setting him up for potential bullying?  It is quite important to raise someone who’s confident enough in him or herself to overcome peer pressure, but it could also be the case that exposing a child to more risk of bullying may have an adverse effect on his or her confidence.

That’s not to say that Sasha will be bullied, but it will depend on his environment.  If Laxton and Cooper chose an appropriate school, perhaps their goal of raising their son to be confident in himself and have a valuable dual perspective on gender will not be compromised by the very gender stereotypes they are attempting to undermine.  “Egalia,” a preschool in Stockholm, Sweden comes to mind (as an example of the kind of environment in which Sasha could flourish).  Staff do not use words like “him” or “her,” but rather a made-up neutral term and students are encouraged to do the same.  Moreover, traditional “boy” and “girl” toys are spatially integrated so as to obliterate any value systems associated with stereotypical gender preferences.  For those interested, here is the article.

Bullying has not ceased in spite of a laudable movement to curb it.  Although Laxton and Cooper’s hearts may be in the right place, they have influence only over Sasha’s worldview and not that of other children (who get theirs from their own parents or guardians).  Are they putting Sasha at risk, as Dr. Eugene Beresin claims?  And if the answer is yes, are they entitled to make such choices for Sasha if they lead to increased risk of bullying, which could potentially be developmentally as well as physically harmful?

Limelight Film Festival: Edmonton

The Limelight Film Showcase, Day 2, is TOMORROW, i.e., Tuesday 18th October, 2011, at the University of Alberta campus in Edmonton.  All events are in Myer Horowitz Theatre in the SUB Building, and the festival runs from noon until around 10pm and includes not only short and feature films, but also live dance and movement performances.  Check out the schedule via the festival page here.  All events are free and open to the public.

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.

Added support for compensation and public acknowledgment for eugenics victims in North Carolina

h/t Doug Wahlsten.

North Carolina state flag

The state of North Carolina has recently been revisiting its extensive eugenic past, and the latest move is a statement of support for compensation for sterilization victims from the director of Legal and Regulatory Studies at the John Locke Foundation.  Eugenic sterilization legislation was in place in NC until 1979; there are slightly fewer than 3000 living survivors of the regime of sterilization that was in place in NC until that time.

The full story is in the Lincoln Tribune.

The Importance of Being Innocent: Why We Worry About Children

 

The Importance of Being Innocenct: Why We Worry About Children

Joanne Faulkner’s recently published book on childhood, The Importance of Being Innocent, was the topic of an Australian Broadcasting Corporation talk show segment today. You can here the interview here; here is the url directly:

http://mpegmedia.abc.net.au/rn/podcast/2011/02/lms_20110224_0919.mp3

A chunk of the book can be read at the Cambridge UP website:

http://www.cambridge.org/aus/catalogue/catalogue.asp?isbn=9780521146975

Dr. Faulkner is a member of the Living Archives on Eugenics in Western Canada team.  She is currently a postdoctoral fellow in philosophy at the University of New South Wales, and formerly held a Killam Postdoctoral Fellowship at the University of Alberta.

 

Dialogue of the Domestic reveals the hidden parts of humankind

In Dialogue of the Domestic, University of Alberta graduate student Anna House says she tries to show how, by arranging items in homes, occupants tell stories about themselves and leave out disturbing details they prefer kept out of the spotlight. She says that domestic interior tells a story about relationships and human character.

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.

Euthanasia Hearings Begin in Quebec

Euthanasia, always a controversial topic, is about to get alot of media attention again…

From CTV.ca

As public hearings on the controversial topic of dying with dignity get underway in Quebec, the chair of the committee expects debate to become emotional.

Quebec Liberal MNA Geoff Kelley says it’s been 17 years since B.C.’s Sue Rodriguez brought the issues of mercy killing to the fore, when she fought all the way to the Supreme Court for the right to kill herself. And though the court eventually ruled against her, the debate has never gone away, he says.