Talking about my generation

Ok, well, not quite … really my neighbouring generation. But still. It’s close.

I figure we all need at least a mini-break from some of the heavier-duty stuff going on at What Sorts of late. Or at least I do. So here’s at least a gesture in that direction.

Check out this smart, popular and prize-winning video, Lost Generation, from the AARP U@50 video contest. Who said that youth today were cynical?

The video that follows contains small print of all the words that are used in the audio. No transcript.

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. Continue reading

Kuru, pedophilia, and white-washing science

Evolving Thoughts has an interesting recent post on recently deceased Nobel laureate Carleton Gadjusek, who not only discovered significant things about the transmissability of kuru, aka Creutzfeldt-Jakob disease, but was also a convicted (and seemingly unabashed) pedophile. The hairy gorilla of a blogger at Evolving Thoughts (aka John S. Wilkins), prompted by an obituary of Gadjusek that, understandably, doesn’t make Gadjusek’s pedophilia its focus, offers us the following:

Gadjusek was a moral deviant who harmed children (almost necessarily if he had sex with boys). He also discovered a transmissible dementia that has ultimately changed our way of thinking about neurological diseases and the very nature of disease itself. Like the founder of vascular surgery, Alexis Carrel, who worked with the Nazis in eugenic extermination, his work was good even if he was not. Continue reading

Living with Trisomy 13, Part 2: The Monitor

[This is the fourth post in a series highlighting a public dialogue held at the University of Alberta on October 23rd, 2008, titled The Modern Pursuit of Human Perfection: Defining Who is Worthy of Life. It is also the second part of a description of events given by Sam Sansalone. The first part can be found here. The dialogue was sponsored by the What Sorts Network, in conjunction with the Canadian Association for Community Living and the Alberta Association for Community Living. This series will bring forward the videos made of this event twice a week, roughly every Wednesday and Saturday. For further context, please see the introductory post in the series, which can be found here; we'll string together all posts in this series when we have most / all of them up.]

In this video (followed by a transcript) Sam Sansalone continues to describe his experiences trying to keep his daughter, Katya, alive. This part of the story is focused around a monitor necessary to keep Katya alive. The hospital staff clearly recognize that this piece of equipment is needed but seem somewhat reluctant to allow Katya to use the monitor, possibly even arranging a situation where a less medically savvy couple than Sam and his wife would choose to give up the monitor without realizing the consequences (ie. their child quietly choking to death while they slept). Fortunately, the missing monitor is caught and Katya is able to continue living.

As far as we know Katya is the oldest surviving child in Canada to have received a Trisomy 13 diagnosis and Sam closes by sharing his thoughts about why this may be the case.

Watch the video and answer the accompanying poll: Continue reading

One in 1,000 children may become subjected to growth attenuation

On January 23, I attended a symposium at University of Washington on the controversial “growth attenuation” treatment for children with “profound” developmental disabilities. The event was an update to the larger 2007 symposium which followed the controversy surrounding the case of Ashley, a six year old girl with severe physical and developmental disabilities, who went through a combination of hormonal treatment to stop (or attenuate) further growth, hysterectomy (which the hospital performed without a legally required judicial review), and double mastectomy (which physicians called “breast bud removal” because she was pre-pubertal).

Since the last symposium, the University and its Seattle Children’s Hospital gathered a Working Group made up of doctors, medical ethicists, legal scholars, disability theorists, and at least one parent of a child with developmental disability to explore whether or not growth attenuation should be offered in the future, and if so under what circumstances. While members of Working Group started out with divergent views on growth attenuation therapy, they were able to come to some moral compromises, according to University of Washington pediatrician and ethicist Benjamin Wilfond. Among other things, most Working Group members agreed that, regardless of how they may felt individually about growth attenuation, it was morally and ethically acceptable if parents of “profoundly” disabled children request it.

How “profound” does the child’s disability have to be? According to Wilfond and others, Continue reading

Ian Hacking’s critique of the Theory-of-Mind-deficit theory of autism

[This post is the eleventh 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 below concerns talks by Ian Hacking and Victoria McGeer on theory of mind and autism at the conference.]

Background:

Theory of Mind and its deficit:

“Theory of Mind” (ToM) is a philosophical interpretation of a certain kind of cognitive psychology. The idea is based on what has been called folk psychology. This describes our ordinary understanding of each others’ behavior as analogous to a scientific psychological theory. Each individual’s own folk ToM hypothesizes that other people have unobservable (to the observer) intentions, beliefs, and desires. These hypothesized mental states are seen as analogous to theoretical conjectures in science. On this notion, we begin in childhood to construct a theory of mind about other people, and we elaborate that theory as we develop and mature. An underlying assumption is the double-edged notion that A) human behavior is based on (perhaps caused by) internal, language-like inferential structures in the brain (e.g. beliefs and desires), and B) we hypothesize (in our ToM) that other humans have the same kind of language-like structures that we ourselves use in reasoning about the world.

cartoon illustration of Theory of Mind; you hypothesize the cartoon character's innards

Beginning of a cartoon illustration of Theory of Mind; you hypothesize the cartoon character's innards

[To observe ToM for the above cartoon click here. Watch right away -- on some browsers it only runs once. Your "theory" is about why the cartoon character is going downtown.]

ToM-deficit as a theory of autism:

Psychologists Simon Baron-Cohen, Uta Frith and others built a theory of autism based on the ToM notion of cognitive psychology. People on the autistic spectrum often have difficulties interpreting the behavior of neurotypicals. For example, autistic children fail at certain “pretend” tasks at a later age than neurotypical children (especially tasks involving deception). These difficulties are said to be caused by a failure in the autistic children’s ToM process, which autistic children learn at a later stage than neurotypical people, and possibly never learn at all.

Hacking’s alternative:

Hacking rejects ToM in general, not only in the ToM-deficit theory of autism. He replaces it with a Wittgensteinian Form-of-Life (FoL) theory of language and social knowledge. On this view, language and social interaction is a norm-based practice, and such practices cannot be analyzed in terms of internal, language-like “theories” about the domain governed by the norms. Practices cannot be reduced to theories; you cannot learn to rollerskate by reading a book. The ToM notion that we infer people’s intentions based their behavior is a mistake (says Hacking); we intuitively and directly see people’s intentions. He callse these intuitive “seeings” of mentality are “Köhler phenomena” (after the Gestalt psychologist who, Hacking says, inspired Wittgenstein). The intuitive skills of neurotypicals are falsely described by ToM, and so autistics are falsely described as having a deficit of ToM.

Autistic Narratives:

Hacking proposes that the autistic narratives may actually contribute be constituting (rather than merely describing) the nature of autistic experience. This is especially true of reports of pre-linguistic experience that many autism narratives report — experience that which occurred before the autistic individuals (who wrote the narratives) had achieved linguistic communication. This final claim relates to Hacking’s earlier studies of fugue states and multiple personality conditions. These psychological conditions were, in part, constituted by the ways in which people decided to describe them. This is Hacking’s version of social constructionism, which avoids some of the epistemological relativism that accompanies other versions of constructionism. Continue reading

the mustard seed presentation

Way back in 1990, three of us agreed to do a presentation at the TASH (Association for the Severely Handicapped) Conference in Chicago. I’d done a lot of presentations but this one was different. All three of us had been the parents of kids with severe disabilities, and all three of those kids had died. That was basically what our presentation would be about, three sad stories. Continue reading

The son that Trent can never be, and what to do

Recently a friend of mine, Samantha, wrote to me expressing the following feelings of ambivalence. Samantha had just returned from a trip accompanying her sister to China to help meet and greet a new member of her sister’s family, a beautiful 4-month old baby boy, whom her sister and her husband had just adopted. A few years ago, Samantha’s own 11-year-old son had suffered a brain injury that had him hospitalized for over 6 months, from which he continues to recover, slowly but steadily, though it has become obvious that there are limitations to how complete that recovery will be. Walking and talking, likely finishing school, yes, but many visible cognitive and personality, changes that most would view, and that Samantha views, as definitely for the worse. There’s much that I could write on this, but far better to leave it entirely in Samantha’s own words (with her permission), including the question she has. Samantha writes: Continue reading

MSNBC article about ‘One-person, one-fare’ ruling for Canadian airline travel

Canadian doctors decry airline ‘tush test’

Carriers comply with disability ruling; critics claim they’re passing the buck

Air Canada diagram

The picture above is the diagram which appears in the AIR CANADA medical form instructing doctors how to calculate the width of someon’s behind. The diagram, which is a line drawing, depicts the naked back and partial buttocks of someone who is seated. An arrow pointing to the outside of the left buttock indicates “Point A” and an arrow pointing to the outside of the right buttock indicates “Point B”.

By Harriet Baskas – Travel Writer

After fighting it for nearly a year, Canada’s major airlines finally unveiled procedures they claim will comply with the Canadian Transportation’s Agency’s “one-person, one-fare” ruling. On all domestic flights within Canada, the carriers are required to provide additional seating to disabled travelers who must be accompanied by a personal attendant or to travelers determined by medical professionals to be functionally disabled by obesity.

How airlines determine who needs or gets an extra seat has been a thorny issue. On Jan. 10, Air Canada and WestJet announced they will require disabled or obese passengers seeking a second seat to get a note from a doctor and send it in for review well before their flight date. But doctors, disability rights groups and travelers of all sizes are calling that requirement everything from “too burdensome” to “ludicrous,” and they give the plan’s chances of working a big fat zero.

Disability rights groups claim the medical forms require passengers to give too much personal information to the airlines. They suggest a third party — one more experienced with these issues — would be better suited for the job. The Canadian Medical Association (CMA), meanwhile, is complaining that the form asking doctors to measure a patient’s behind “shows a disregard for the use of scarce medical resources.”

Read the entire article here: http://www.msnbc.msn.com/id/28777115/

Acknowledgements to Beth Haller at media dis&dat.

Criminally ugly

This is an excerpt from Michael Pollack’s FYI column in today’s New York Times:

Q. I’ve been told that it used to be a crime in New York to be ugly in public. Sometimes it feels that way, but was it literally true?

A. Practically. In many cities in the 1880s and 1890s, groups dedicated to separating the “worthy” from the “unworthy” poor tried to suppress begging by passing “ugly laws.” Their special targets were disabled mendicants who attracted public sympathy.

About 1895, one Charles Kellogg drafted an extreme version of the law for New York, working with the Charity Organization Society in New York.

The draft read: “It shall be unlawful for any person, whose body is deformed, mutilated, imperfect or has been reduced by amputations, or who is idiotic or imbecile, to exhibit him or herself” in a public place for money, or to seek charity door to door.

Susan Schweik, professor of English at the University of California, Berkeley, describes the state of affairs in “The Ugly Laws,” to be published this spring by New York University Press. “The disability movement is really the sole place where it’s been remembered in American culture,” Professor Schweik said in an interview.

Read the full answer here: http://www.nytimes.com/2009/01/25/nyregion/thecity/25fyi.html?_r=1

Living with Trisomy 13, Part 1: Stereotype Propagation and the Illusion of Choice

[This is the third post in a series highlighting a public dialogue held at the University of Alberta on October 23rd, 2008, titled The Modern Pursuit of Human Perfection: Defining Who is Worthy of Life. The dialogue was sponsored by the What Sorts Network, in conjunction with the Canadian Association for Community Living and the Alberta Association for Community Living. This series will bring forward the videos made of this event twice a week, roughly every Wednesday and Saturday. For further context, please see the introductory post in the series, which can be found here; we'll string together all posts in this series when we have most / all of them up.]

In the following video clip (with transcript) Sam Sansalone begins to share his experiences fighting to save his daughter, Katya, who was born with Full Trisomy 13 (a condition where the child has an extra chromosome 13, for more information see www.livingwithtrisomy13.org). I think you will find this story interesting for two points that Sam shares. First, there is the issue of medical personnel intentionally withholding information about the quality of life that children with Trisomy 13 can expect; an act of deliberately propagating a stereotype. The exact reason for sharing this behaviour is unclear but it is likely at best a form of misplaced paternalism and at worst a set-up for point two.

Point two is Sam’s experience with the illusion of choice that can so often exist in our society, whether inside the medical community or not. In such situations people are initially presented with the opportunity to make their own choice about a difficult decision (and typically information to sway them to a particular side, the tie-in to point one). If the choice falls inline with what is expected then all is well, there may be a few tears and some whispered “I know it’s hard, but you’ve done the right thing”s, but life goes on. BUT if the choice falls outside of what is expected, then you are clearly not in your right mind, your response is rejected, and authority for the decision is assumed by whomever gave you the illusion of choice in the first place.

When the bioethics community steps in Continue reading

Sobsey on Ashley X – A What Sorts Network Recap

Professor Dick Sobsey of the John Dossetor Health Ethics Centre at the University of Alberta has been blogging with the What Sorts Network since the very beginning. One of his areas of particular interest and experience is the Ashley X case. In this post we assemble together all of the posts made by Dick that refer to this case, creating a bridge between earlier articles on the subject and more recent ones that have come out of our series Thinking in Action: The Modern Pursuit of Human Perfection. If you are unfamiliar with the case then refer to the the first blog post highlighted here for additonal information. Continue reading

Eugenic strategies under patriarchal (neo)liberalism

[Today the F.D.A. in the US approved the test of a "therapy" for spinal cord injuries developed with embryonic stem cells, which the *NY Times article below reports. Not surprisingly, the article mentions the controversy that surrounds embryonic stem cell research with respect to the moral status of the embryo, but makes no mention of the potential for the technology to lead to increased commodification of women's bodies and exploitation of women in the global South, nor its deleterious consequences for the lives of disabled people, issues I have discussed in my comments to previous posts made on the blog. -- ST]

F.D.A. Approves a Stem Cell Trial

Published: January 23, 2009

In a research milestone, the federal government will allow the world’s first test in people of a therapy derived from human embryonic stem cells. Geron’s trial with embryonic stem cells will involve people with severe spinal injuries, and will mostly test the therapy’s safety. Federal drug regulators said that political considerations had no role in the decision. Nevertheless, the move coincided with the inauguration of President Obama, who has pledged to remove some of the financing restrictions placed on the field by President George W. Bush.

The clearance of the clinical trial — of a treatment for spinal cord injury — is to be announced Friday by Geron, the biotechnology company that first applied to the Food and Drug Administration to conduct the trial last March. The F.D.A. had first said no, asking for more data.

Thomas B. Okarma, Geron’s chief executive, said Thursday that he did not think that the Bush administration’s objections to embryonic stem cell research played a role in the F.D.A.’s delaying approval. “We really have no evidence,” Dr. Okarma said, “that there was any political overhang.” But others said they suspected it was more than a coincidence that approval was granted right after the new administration took office. “I think this approval is directly tied to the change in administration,” said Robert N. Klein, the chairman of California’s $3 billion stem cell research program. He said he thought the Bush administration had pressured the F.D.A. to delay the trial. Mr. Klein called the approval of the first human trial of this sort “an extraordinary benchmark.”

Stem cells derived from adults and fetuses are already being used in some clinical trials, but they generally have less versatility than embryonic stem cells in terms of what tissue types they can form.

Read the entire article here: http://www.nytimes.com/2009/01/23/business/23stem.html?th&emc=th

*(Notice that this article appears in the Business section of the NY Times, rather than its Technology section.)

Does Alberta’s “Minimum Wage Exemption” violate the Canadian Charter of Rights and Freedoms?

or, for that matter, the Alberta Human Rights Act? Take your pick!

h/t to Ivan Mulkeen, and to the Edmonton Social Planning Council blog, where this post was just put up:

from the fACTivist, Winter 2009

by Cindy de Bruijn, Executive Director, Gateway Association for Community Living

The Canadian Charter of Rights and Freedoms (15.1) guarantees that everyone is entitled to equal benefit of the law without discrimination based on mental or physical disability.

Yet Alberta Employment Standards Division 10, Section 67 (1) (a) states that with permission, employers can pay employees with disabilities less than minimum wage. It is called the Minimum Wage Exemption, and we should be ashamed that in the year 2009 this is happening in our Province.

Policies such as the minimum wage exemption exist because of the misconception that people with developmental disabilities aren’t as productive as other workers. This fallacy provides a basis for taking advantage of people. It is believed that if a person with a developmental disability can only perform a job at 75%, then he or she should only be compensated at that level. First of all, this conveys the major assumption that just because someone has a developmental disability, they could only perform at a certain level. Furthermore, if we are being truthful, most of us can admit that our performance at work isn’t at maximum potential. We are constantly bombarded with all the distractions of technology like cell phones and Facebook, and others generally have a poor work ethic. However, we are not having our wages garnished based on assumed lacks of productivity. Continue reading

My doctor, my child: The response of the medical community to a mother who chooses to have a child who might be born with a disability

[This is the second post in a series highlighting a public dialogue heald at the University of Alberta on October 23rd, 2008, titled The Modern Pursuit of Human Perfection: Defining Who is Worthy of Life. The dialogue was sponsored by the What Sorts Network, in conjunction with the Canadian Association for Community Living and the Alberta Association for Community Living. This series will bring forward the videos made of this event twice a week, roughly every Wednesday and Saturday. For further context, please see the introductory post in the series, which can be found here.]

The story you are about to hear you may find surprising in a number of ways; I know that I certainly did when I heard it on the night it was recorded. The contrast between the adversity faced by Wendy MacDonald and her family from the medical community upon making the decision to keep her baby early in the pregnancy and the support they received once it was finally time for Kyle to be delivered struck me as a very unfortunate demonstration of the power of linguistic framing. The shift in language from “miscarriage” to “premature birth” is a small one (the addition of one word, one syllable, and three letters), but it made all the difference for this family and the ability of the medical personnel involved to support them. I also found the adamant stance of her family doctor a bit perplexing, the sort of chilling paternalism that so often arises out of a misplaced belief that we alone have access to the knowledge of what is best for others. Perhaps even more than this I was surprised that this story had, and continues to have, a happy ending. For every Wendy MacDonald I am sure that there are many, many women who would be mothers and men who would be fathers that are bullied into conforming with the system because the system “knows best.”

Perhaps this video will make you a little angry, but it should also give you a little hope. Enjoy. Transcript of the clip beneath the fold. Continue reading

Thinking in Action 10-pack

Over the past month we have been running a series of blog post dedicated to drawing attention (initially at least) to a series of talks held at the Cognitive Disability conference in NYC in September 2008.  These talks were video recorded, allowing the ideas presented to be accessible to a larger audience than could have possibly attended the conference.  Through our blog posts it is hoped that we might generate further discussion in a public forum accessible to a wide audience.  What follows is a complete listing of our ten-posts in this series so far listed from oldest to newest.

None of the issues dealt with are simple and the only way to navigate them is together, so look back and add your voice to the discussions that are taking place.

1. Peter Singer on Parental Choice, Disability, and Ashley X

2. Singer’s Assault on Universal Human Rights

3. What are the deep facts about our moral status?

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

5. Peter Singer & Profound Intellectual Disability

6. Animal Rights: Gorilla Sued for Sexual Harassment

7. The Central Question

8. Undoing the binary of cognitive ability and cognitive disability

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

10. Can thought experiments harm people?

Remember, this discussion series has only just begun…

CFP: ‘Life going on and on: time, embodiment, ageing’

RGS/IBG annual conference 2009, Manchester (www.rgs.org/AC2009)
2nd Call For Papers: ‘Life going on and on: time, embodiment, ageing’

Co-Sponsored by: Social and Cultural Geographies Research Group and Geographies of Children, Youth and Families Working Group.

Organisers: Bethan Evans, Manchester Metropolitan University; John Horton, The University of Northampton; Peter Kraftl, University of Leicester.  Please send abstracts to b.evans@mmu.ac.uk by 29th January 2009

A range of recent geographical work has questioned the multiple spatio-temporalities and conceptions of embodiment which drive particular ways of knowing, being and acting on and in the world. Geographers have, for instance, continually questioned the spatialities of time, and vice-versa (Massey, 2005; Dodgshon, 2008). Recent work on pre-emption and hope has highlighted the affective registers at play in the potential futures open to intending subjects/societies (Anderson, 2006; 2007). Geographers of age have insisted upon more relational understandings of age, inter-generational relations, agency, responsibility and the lifecourse (Hopkins and Pain, 2007). Children’s geographers have deployed nonrepresentational theories to query the linearity of ‘growing up’, stressing that “embodiment-and this being-in-the-world-is always becoming: bodies are always in flux; always ongoing; never still”(Horton and Kraftl, 2006a, 2006b). This session seeks to bring together critical debate about the diverse, multiple conceptions of spatio-temporality such as those above (and more besides).

Continue reading

First PGD BRCA1 baby born in UK

As the BBC has reported here, the first baby has been born in the UK whose birth was a function of preimplantation genetic diagnosis (PGD) for–or, rather, against–a gene, some of whose alleles have mutations strongly correlated with certain forms of breast and ovarian cancer. What follows are the basics, and two viewpoints on this, and a poll for you to participate in. Continue reading