Scope of Eugenics – Call for Submission – extended until March 1, 2015

The Scope of Eugenics
Call for Submissions

Eugenics Archives (eugenicsarchive.ca) is pleased to announce a four-day workshop at the Banff Centre, May 22nd-25th, 2015, in Banff, Alberta. To acknowledge the significant contributions made by students to the Living Archives on Eugenics in Western Canada project over the past four years, we invite submissions from early career scholars—students and those within three years of completing their doctorates—from any discipline on topics related to eugenics and its contemporary significance.

Submissions should consist of a single document that includes a (i) summary abstract (<150 words), (ii) longer description (<750 words) outlining the presentation and explaining the relevance of the topic to eugenics, (iii) short biographical statement (<100 words), and (iv) CV. Possible topics include, but are in no way restricted to, the following :

Apologies to eugenics survivors Child welfare
Collective memory Human diversity
Nationalism Quality of life
Queer sexuality Roma peoples
Schizophrenia World Health Organization
Whiteness Particular Countries / Geographic Regions

The project director is happy to provide feedback to potential participants on these and other suggestions (e.g., on particular countries or regions of the world). Participants are expected to attend the whole workshop and to contribute a short article to eugenicsarchive.ca, ideally based on their presentation, within one month of the workshop. Articles accessible via the Encyc or Around the World modules at the site indicate the type of article we have in mind.

Accommodation and meals for all workshop participants will be covered by Eugenics Archives. Participants will also be notified upon acceptance if we are able to cover in full, or contribute to in part, additional travel expenses. The workshop will allow for substantial opportunities to enjoy the Banff surrounds and will encourage networking, mentoring, and informal discussion between junior scholars interested in eugenics and Eugenics Archives team members.

Scope of Eugenics Poster with Mountains
Deadline for submissions : February 15th, 2015 EXTENDED to March 1, 2015 Acceptances : March 15th, 2015

Questions and submissions to the project director, Professor Rob Wilson : scopeofeugenics@gmail.com

Website: https://scopeofeugenics.wordpress.com/

Hosted by the Living Archives on Eugenics in Western Canada

Maine law changes disparaging language in state statutes, programs

from Bangor Daily News Maine, April 9th, 2012:

Christina Mailhot got teased a lot as a child.

Born with Down syndrome, words like “retard” were flung at her every day, meant to be insulting. So when Mailhot, now 33 and a member of the Augusta-based self-advocacy group Speaking Up For Us, heard state officials using “mentally retarded” in relation to people with disabilities, she cringed.

“It’s legal talk; they’re legal words saying we are stupid,” she said. “I’m not that stupid, you know.”

Soon, such words will be wiped from Maine law and removed from the names of some Department of Health and Human Services programs. They will be replaced with phrases like “intellectual disability” and “person with a disability.”

Read the whole article here

Offensive words and phrases and their recommended replacements:

• Afflicted (eliminate or use “affected”)
• Crippled children (children with disabilities)
• Deranged (persons who have mental health diagnoses)
• Drunkard (person with alcoholism)
• Handicapped (eliminate as a noun, as in “the handicapped.” Replace with “disabilities” when paired with a person, as in “child with disabilities”)
• Lunatic (person declared legally incompetent)
• Mental deficiency (cognitive disability)
• Mental retardation (developmental disability)
• Mentally defective (has a cognitive disability)
• Senile (eliminate or use “people with dementia” or “people who have dementia”)

Dr. Diekema’s official view of “surgical risks” and its contradiction to his justification of the Ashley case and the HCR article by the growth attenuation WG

Dr. Diekema attested as a qualified doctor in a case of botched circumcision in the superior court of Washington in January 2006. What he said there is quite interesting when we think of his Ashley case justification. I find his views of “surgical risks” and “pediatrician’s moral and ethical responsibilities to analyze risk vs. benefit independent of parents’ desire” totally relevant to the “Ashley treatment” debate.

http://www.circumstitions.com/ethics-diekema.html

For example, he says, “Non-therapeutic procedures that involve excessive risk should be avoided. An appendectomy on a healthy child, who has no history or symptoms of an appendicitis and who is not undergoing an abdominal surgery for other therapeutic reasons, for instance, would not be ethically justifiable because the absence of benefit to the child would not justify the surgical risks.”

Life worth giving?

Dominic Wilkinson’s article in AJOB February issue.

http://www.ncbi.nlm.nih.gov/pubmed/21337273

Abstract

When is it permissible to allow a newborn infant to die on the basis of their future quality of life? The prevailing official view is that treatment may be withdrawn only if the burdens in an infant’s future life outweigh the benefits. In this paper I outline and defend an alternative view. On the Threshold View, treatment may be withdrawn from infants if their future well-being is below a threshold that is close to, but above the zero-point of well-being. I present four arguments in favor of the Threshold View, and identify and respond to several counterarguments. I conclude that it is justifiable in some circumstances for parents and doctors to decide to allow an infant to die even though the infant’s life would be worth living. The Threshold View provides a justification for treatment decisions that is more consistent, more robust, and potentially more practical than the standard view.

 

Wilkinson coauthored the following papers with Julian Savulescu.

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.

Brain Injury Dialogues

Received this from an email list I’m on and thought some might be interested.

Marc

Hello,

Brain Injury Dialogues is an engaging documentary that  was written and co directed by me, a brain injury survivor of 18 years, and my friend, veteran filmmaker Lyell Davies, who is on the faculty of the City University of New York.

We have priced our documentary at $25, making it easily affordable for virtually any library, media center, or as an instructional aid.

Public performance rights are included with our price.

Brain Injury Dialogues reveals many invisible aspects of this hidden disability; viewers see the wide range of deficits that survivors must face, both physically and mentally, and learn how no two brain injuries are ever alike.

Inclusive Post-Secondary Education

Alberta is a Province of contrasts. While Alberta’s role in sterilizing people with Developmental Disabilities as late as the 70s is infamous, Alberta also deserves kudos to for providing the world’s first inclusive post-secondary education program for people with developmental disabilities in the 1980s, and the On Campus program continues today, 23 years later at the University of Alberta. Alberta now boasts inclusive post-secondary education programs at 17 colleges and Universities across the Province and maintains an international leadership role in the field. Unfortunately, these programs sit precariously on the chopping block today as Alberta faces financial difficulties.

The Ashley Treatment: From the Beginning

Anyone interested, even vaguely, in what all the fuss is about on the Ashley X case, or who wants a review of the facts of the case, might make a start at a new website:

http://www.ashleytreatment.info/

Thanks to the work of Huahima over at Mysteries and Questions Surrounding the Ashley X Case, this case has not simply slipped into the annals of things that doctors and hospitals can get away with.

The development of this case continues to be ominous and scary. Anyone with a serious interest in disability, human rights, and medical interventions, should tune in. For the previous 18 What Sorts posts on the case, either search the blog via the category Ashley X or simply click right here.

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)
Save Article

A legal article says that courts should take new standards and approve the “Ashley Treatment” because the therapy can be more important than non-person’s fundamental rights

 I know Peter Singer’s assertion that children with profound mental disabilities are not entitled to “moral status”. I remember Dr. Diekema argued defending the Ashley case that Ashley is not entitled to the same dignity as others are because she is just like a baby. Now I’m shocked to read a paper written by a lawyer named Christine Ryan that says profoundly incompetent persons may not be entitled to the basic rights protected by the Constitution because they can be non-persons depending on the definitions of persons.

Revisiting the legal standards that govern requests to sterilize profoundly incompetent children: in light of the “Ashley Treatment,” is a new standard appropriate?

Christine Ryan, Fordham Law Review, September 26, 2008

This is a long article of about 40 pages. Starting with a detailed review of the Ashley case and its development, the first thing the author does is to point out that profoundly incompetent persons are not entitled to the basic individual rights acknowledged by the Constitution based on the definition of personhood. It also mentions the UN Convention on the Rights of Persons with Disabilities and states that constitutional protections attached to persons with disabilities by the Convention require consciousness as the minimum condition of personhood,

Dr. Diekema’s latest paper is AAP statement on withdrawing nutrition from children

Forgoing Medically Provided Nutrition and Hydration in Children

 Douglas S. Diekema, MD MPH, Jeffrey R. Botkin, MD, MPH Committee on Bioethics

PEDIATRICS Vol. 124 No.2 August 2009, pp. 813-822

 

An excerpt from the abstract:

The American Academy of Pediatrics concludes that the withdrawal of medically administered fluids and nutrition for pediatric patients is ethically acceptable in limited circumstances. Ethics consultation is strongly recommended when particularly difficult or controversial decisions are being considered.

The Med Page Today has detailed information on this statement here. It says,

The AAP’s bioethics committee, headed by Douglas S. Diekema, MD, MPH, and Jeffrey R. Botkin, MD, developed a position statement outlining limited circumstances under which clinicians can ethically halt feeding and hydration in pediatric patients. “Medically provided fluids and nutrition may be withdrawn from a child who permanently lacks awareness and the ability to interact with the environment,” according to a statement published in the August issue of Pediatrics, the official AAP journal.

Dr. Diekema, the ethicist in charge of the Ashley case who has been trying very hard to make growth attenuation therapy into general practice,  is chair of the AAP committee on Bioethics now.

The new growth attenuation paper by Dr. Diekema, Dr. Fost with others

I read the full text of the growth-attenuation paper written by Dr. Diekema and Dr. Fost with others in the June issue of the Pediatrics. So many questions and mysteries again. I will point out some of them here for now. Some of the questions and mysteries will be reviewed more closely in my future posts.

1. The authors’ definition of profound cognitive disability “for purpose of growth-attenuation therapy” is not totally about cognitive disabilities but mostly about physical disabilities. It disguises the fact that growth attenuation is in fact a therapy that addresses problems caused by severe physical disabilities, not by cognitive disabilities, which they have been using as a convenient excuse for justification. But maybe we should also note that the authors didn’t forget to add “for present time” when they wrote that it should be limited to children with profound cognitive disability.

2. Their justification for excluding hysterectomy and breast bud removal from discussion is something like this: Criticism was mostly targeted at hysterectomy and breast bud removal in the Ashley case controversy in 2007 (implying maybe that growth attenuation was not all that criticized and pretty much approved?), and in addition, growth attenuation does not necessarily accompany the other two interventions. But these are lame excuses.

Schrödinger’s Cat & Donation after Cardiac Death

Quantum Ethics: Schrödinger’s Cat & Donation after Cardiac Death

Recent discussions of transplanting hearts from so-called DCD (Donation after Cardiac Death) patients into others (for example the recent Baby Kaylee saga at Toronto’s Hospital for Sick Children) raise serious questions that seem to only have explainable answers in the field of quantum physics. I don’t know if physicist Erwin Schrödinger actually had a living, breathing cat but the hypothetical cat that he proposed to illustrate a paradox back in 1935 to illustrate a paradox has certainly achieved fame.

Samantha, Loss and Ableism

[This post is the thirteenth in our series of Thinking in Action posts, the series being devoted initially at least to discussion of talks at the Cognitive Disability conference in NYC in September; this one takes up another concrete example concerning conference-themes, but not a conference talk. You can go to the Thinking in Action 10 pack, which links to the first 10 posts in the series; the posts run Tuesdays and Fridays, for the most part, and the series will wind up shortly. The posts immediately before this one concerned talks by Ian Hacking and Victoria McGeer on theory of mind and autism and Licia Carlson on moral authority].

I would like to raise some questions around the issue of whether Samantha is an ableist (for background, see the original post The son that Trent can never be …). While it is true that Samantha’s trip to China brought up feelings of loss about her son’s brain injury, she evidently feels guilty about those feelings of loss. What she said to Rob makes clear that she wants to value and appreciate her son the way he is. Indeed, her guilt about her sense of loss seems to stem precisely from the fact that she is committed to valuing her disabled son. In other words, her guilt seems to stem from anti-ableist commitments. For those who don’t want to go back to the original post, and the comments on it that have prompted this post, here’s the crucial bit of what she said about her brain-injured son Trent:

I found it rather hard to be around a baby boy who reminded me so much of Trent’s babyhood. It brought up a lot of feelings about Trent, and about the son that Trent can never be now. Maybe I still need to mourn the Trent that is now gone, but I feel guilty about mourning him, because he’s not dead. I guess I feel like if I mourn him it must mean that I don’t love and appreciate him enough the way he is now. I’m not quite sure what to do with all those feelings, but being around a baby boy sure brought them up. It’s going to be hard in some ways, I think, watching my nephew grow up to be a son I will not have now. What to do? . . . .

One might want to conclude that Samantha is an ableist from the bare fact of her sense of loss. Here, the reasoning would be that, if she weren’t an ableist, then she wouldn’t feel a sense of loss in the first place, so the very fact that she feels a sense of loss by itself shows that she does not properly value disabled people, or that she has prejudices against disabled people, including (now) her own son.

The Myth of the Dispassionate, Disengaged, Objective Philosophical Stance

[This post is the twelfth in our series of Thinking in Action posts, the series being devoted initially at least to discussion of talks at the Cognitive Disability conference in NYC in September. You can go to the Thinking in Action 10 pack, which links to the first 10 posts in the series; and the posts run Tuesdays and Fridays, for the most part. The post immediately before this one concerned talks by Ian Hacking and Victoria McGeer on theory of mind and autism at the conference and can be linked to directly here.]

Licia Carlson’s thought-provoking talk, “A Challenge to Moral Philosophy,” asks us to make the philosopher the object of the study through a discussion of the multiple positions that philosophers occupy in relation to intellectual disability—institutional expert, genetic counselor, family member/advocate, non-human animal, and intellectually disabled themselves. She asks: “What parallels can be drawn between these figures and the philosopher of intellectual disability, and what can these figures reveal to us about our own philosophical projects regarding intellectual disability?”

She suggests that philosophers who occupy the family member/advocate role are often placed in a “double bind.” Because philosophers are supposed to be dispassionate, disengaged or objective, philosophers who are advocates for the intellectually disabled are often either discounted because of their personal relationships to people with intellectual disabilities or they are silenced altogether. She uses this point to argue for what appears to be a version of a kind of care ethics. Here is a clip from her talk:

(Written transcript of clip appears below.)

I would like to make a few points about Carlson’s argument here.

Can thought experiments harm people?

[This post is the tenth in our series of Thinking in Action posts, the series being devoted initially at least to discussion of talks at the Cognitive Disability conference in NYC in September. The first post in the series is here and the posts run Tuesdays and Fridays. Transcript of clip beneath the fold.]

A common tool of the philosophical trade is the thought experiment, an imagined scenario that evokes certain kinds of reactions and responses. Imagine that none of the objects that you take yourself to see, hear, or feel in your daily life–water flowing from a tap, a car driving by, other people chatting at a nearby table–actually exist, and that all the experiences you have of them are generated by–take your pick–an evil demon, scientists who have “envatted” your brain, or The Matrix. Is that coherent? If not, why not? If it is a coherent thing to imagine, what does it tell us about our knowledge? our minds? ourselves?

Thought experiments play a central role not only in philosophical thinking in general but in thinking about morality and ethics in particular. Some philosophers have been critical of this kind of reliance, sometimes on the ground that such thought experiments are contrived, artificial, and unrealistic–they don’t have enough connection to the REAL WORLD to tell us much about anything. And surely if ethics and moral philosophy are to be of any use it all they should, at the end of the day, guide our actions. Others think that this simply misses the point of thought experiments, which is to help tease out common sense views of morality that tell us something about the structure and order to moral thinking, the principles that underly, or perhaps even should underlie, moral thinking and so, eventually, moral action.

There’s a different kind of worry that one might have about thought experiments, one that Sophia Wong articulates in a question that she posed to Peter Singer at the Cognitive Disability conference. In some ways, it’s just the opposite to the concern about thought experiments being too far removed from everyday life to usefully inform us about what to do, and it raises the sorts of questions about “the ethics of exclusion” that I’ve blogged on before–see the link beneath the fold for this:

There are a couple of things I found of interest here.

Rethinking “Conceptions of the Good” in Light of Intellectual Disability: What’s dependence got to do with it?

[This post is the ninth in our new series of Thinking in Action posts, the series being devoted initially at least to discussion of talks at the Cognitive Disability conference in NYC in September. The first post in the series is here and the posts run Tuesdays and Fridays.]

In their talks at the disability conference, Anita Silvers and Leslie Francis look at questions about the role of the individual in the process of coming up with the things the person perceives as what is good for them, which includes reasons and motivations for accepting these goods as the person’s own. This is what is typically referred to as “a conception of the good” in the academic literature on social justice. Silvers and Francis argue that the accounts offered by Rawls and Nussbaum characterize this process in a way that is problematic for those with significant cognitive disabilities because they play up importance of the independence of the individual in coming up with their own good. If we adopt a picture of the individual as independent in this way, then it looks like those with cognitive disabilities will be excluded and left without any way to guard against being exploited by others in society. Is there a way to include individuals with severe cognitive disabilities in the process of conceiving their own good and in exercising their conception of the good to the degree required for social cooperation?

The answer, according to, Silvers and Francis in their talks, is ‘yes’. However, an account that includes those with significant cognitive abilities requires a shift in focus from independence to collaboration. The way in which Silvers and Francis suggest we make this shift is what I want to focus on. Part of their task involves expanding the picture by reframing the notion of conceiving of the good as a collaborative process, which involves “a reasonable dependence” on others in coming to one’s conception of the good. One way to illustrate the direction of the revision, which includes moving away from independence and toward reasonable dependence, is the use of trusteeship as a prosthetic process for those with cognitive disabilities. This way of thinking about collaboration and prosthetic processes in this way assists cognitively disabled individuals in coming up with their own good as well as with their interaction with others in coming up with a conception of the good for society (and thereby justifying justice). Before I get to questions about how we are meant to understand prosthetic processes, I’ll talk a bit about the role of independence and why Silvers and Francis find it problematic.

This is contrasted with Rawls’ and Nussbaum’s accounts of political liberalism, each of which relies on its own picture of persons as independent in the process of coming to their conception of the good. The emphasis on the role of independence within the individual’s process of arriving at and revising their conception of the good on their own has been the basis for the claim that his account of justifying justice excluded people with significant cognitive disabilities. And it is the independence of the individual in this way that invokes a “metaphysics of independence.”

What exactly does a metaphysics of independence refer to?

The ethics of exclusion, the morality of abortion, and animals

[This post is the fourth in our new series of Thinking in Action posts, the series being devoted initially at least to discussion of talks at the Cognitive Disability conference in NYC in September.]

Here is a question from Adrienne Asch, together with a response from Jeff McMahan, following Jeff’s talk at the Cognitive Disability conference; Adrienne’s question followed directly on the heels of Naomi Scheman’s question, the subject of the previous post in this series.

[A full, unofficial transcript for this video clip, as well as a poll for you to participate in, are available beneath the fold. If you are having trouble playing the video above, the full transcript is provided at the end of the post, and you can also try Youtube directly by clicking right here, which for some will be more accessible.]

So does simply asking questions like “In virtue of what does human life have moral value and significance?” somehow express an ethics of exclusion? Asch seems to imply so, in part because it is asking us to draw a line between those that have some property, and those who lack it. Above the line are those with full moral status, and below it are The Rest, others who are thus excluded from full moral consideration, at least insofar as we consider them in and of themselves. If that is right, then even those who give very different kinds of answer to the question–such as those, like Naomi Scheman, who appeal to the relationships that people form a part of in their answers–still express this ethics of exclusion, at least at some level, even if they deliver an answer to the question that is more inclusive.

Asking the question as Asch has asked it—“Jeff, what is the purpose of this effort? If it is not the ethics of exclusion, I don’t know what it is.”—invites the personal response that McMahan gives to it. That response comes only after audience members are reminded that pro-choice views about abortion, popular with the politically liberal, express a kind of ethics of exclusion. I suspect that many of the disability theorists and activists in the room, perhaps influenced by Asch’s own work, don’t need reminding about this, at least when it comes to selective abortion on the basis of the results of genetic screening for “defects”. (See, for example, Adrienne Asch, 2003, “Disability Equality and Prenatal Testing: Contradictory of Compatible?”, Florida State University Law Review 315: 318-346–get this and thematically-related articles right here). McMahan got into this, he tells us, through thinking about the morality of abortion, and what it was about fetuses that made some people think that they should not be killed, while those same people were perfectly happy allowing all sorts of animals to be killed, and in some cases, eating them. McMahan’s answer is meant to provide an alternative to the answer that Asch herself seems to proffer. Where Asch sees an ethics of exclusion, McMahan sees the pursuit of abstract philosophical inquiry–albeit inquiry with real-world oomph–wherever it leads.

While one might see Asch and McMahan’s answer as alternatives, one need not; there is more than a grain of truth in each answer.

What are the deep facts about our moral status?

[This post is the third in our new series of Thinking in Action posts, the series being devoted initially at least to discussion of talks at the Cognitive Disability conference in NYC in September.]

What are the deep facts about our moral status? Have your say in a poll at the end of this post!!

Jeff McMahan and Peter Singer have posed the following question, both in their talks for the Cognitive Disability conference, and in their past work: In virtue of what does human life have moral value and significance? They have been especially interested in answers to this question, which are easy to elicit from common sense, that appeal to the properties that human lives embody (e.g., human beings have certain cognitive capacities). They are also both interested in challenging those who would give such answers to think harder about the ways in which we disvalue non-human animal life. More specifically, both Singer and McMahan are skeptical of the coherence of views, including property-based views, that value all forms of human life more highly than all forms of animal life. This is chiefly because not all non-human animal life lacks value-conferring properties, and because not all human life comes with those properties.

There were several especially interesting questions that arose in the question period following McMahan’s talk, one from Naomi Scheman, the other from Adrienne Asch; I’ll comment on just the Scheman one here, and on the Asch question, and the following interchange with McMahan, separately. Here’s the Scheman question (a full transcript of what she says is available beneath the fold):

The clip can be found in podcast #36, the question and answer to Jeff McMahan’s talk (and final podcast on the page), from around 35.45 – 39.00 at the conference website. You can also view it directly at Youtube if you are having trouble playing the video clip above by clicking right here.

Scheman is saying many things here (including things about thought experiments and analogies that I found confusing), but I want to focus on just two of them.

Talking about cognitive disability and moral philosophy

As readers of this blog will know, in September there was a relatively large, special topic conference called “Cognitive Disability: A Challenge to Moral Philosophy”, organized by Eva Kittay and Licia Carlson (and I think Sophia Wong), held in New York City.  In some recent comments here, Shelley Tremain has said the following about the roster of speakers for this conference, particularly the inclusion of Peter Singer and Jeff McMahan:

I would like to know when disability theorists, activists, and our allies came to regard it as beneficial, indeed, laudable, to have Peter Singer and Jeff McMahan speak about disabled people, especially cognitively disabled people. … Giving this kind of attention to nondisabled white, male bioethicists whose awful, dominant views about disabled people are in the public domain (and quite familiar to many of us) serves to further marginalize the work of authors in Disability Studies who are attempting to unravel the misunderstandings and prejudices the views of the former entail for concrete human beings; it marginalizes disabled theorists; it marginalizes feminist disability theorists.