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