Does anyone remember “lobotomy”?

Picture of brain surgery

The New York Times recent Surgery for Mental Ills Offers Both Hope and Risk raises, for me, one big question: why the enthusiasm for bringing experimental brain-fu*king to the public’s attention right now? As the article reports but does not underscore in the name of balance, the history of psychosurgery is one of moral and medical failure, though failures recognized only in retrospect. What could be so different now? That we’re not considering lobotomies (which sever the frontal lobes) but cingulotomies (which sever into the anterior cingulate) and capsulotomies (which sever the connections between the cortex and the medulla that make up the internal capsule)?

h/t to ARPH’s Psychosurgery promoted by the NYT: Here we go, again; for a more optimistic take on this, see also Mind Hack’s Psychosurgery : new cutting edge or short, sharp shock (the only comment up there gives some pause, however).

On reasonable accommodation

Here’s the beginning of a recent autobiographical post from AbnormalDiversity, where you can go if you want to read the whole thing. It tells us a lot about how universities are organized, and what our social priorities are.

OK, so I’ve found out that the midterm in my women and gender studies class requires that I write three essays during the course of the exam, and I know that it’ll be really painful to write that much by hand in a short time, especially when I’m anxious. Well, since difficulty with writing can be a feature of autistic people, and I’m registered at the university as an autistic student, shouldn’t I be able to use a computer to write my exam?

Not so fast! They can’t just take my word for it! They need a doctor’s note, which means I need to bug my Dad about making an appointment with the doctor, so that I can go and tell her what I need and she can write it down. Why is this necessary, again? My doctor doesn’t actually know what accommodations I need, she’s literally just writing down whatever I tell her, so why can’t I just tell them directly?

But anyway, we get the doctor’s appointment, a couple of weeks after I first figured out that I needed it. Then I miss it. We reschedule, and finally I’ve got a doctor’s note saying I need to use a computer for essay exams.

No more toxic BPA in our food

For those in the US, a simple petition to sign in the process to have BPA banned from food-related packaging

http://act.credoaction.com/campaign/fda_no_bpa

Canada already banned BPA in 2008 in infant food containers, and there was a more widespread voluntary withdrawal of BPA products by retailers, likely anticipating (and so avoiding) consumer backlash. If the sorts of people you want around are ones who are healthier rather than less healthy, but this is news to you, then check out the info below Continue reading

The Scientific Review Process: One Perspective

Since I was at a talk earlier today, in part, on Steve Fuller’s seemingly crazed proposals for reforming the division of labour between “public” and “private” science, with seeming implications for how peer review would be handled, I now think that this is funniest of the variations on the parody video below that I’ve seen. h/t to Cruel Mistress, who has just posted it.

Nov 25: White Ribbon Day, and “Polytechnique”

White Ribbon Day was created by a handful of Canadian men in 1991 on the second anniversary of one man’s massacre of fourteen women in Montreal.  They began the White Ribbon Campaign to urge men to speak out against violence against women.

In 1999, the United Nations General Assembly declared November 25 the International Day for the Elimination of Violence Against Women (IDEVAW) and the White Ribbon has become the symbol for the day.

See the following websites for international support for WRD; info on the related film Polytechnique also below the fold: Continue reading

Rising Sun Theatre: By Popular Demand!

 

The good folk of Opposite Gulch, a tiny hamlet in the Badass Badlands of Southern Alberta, thought the sandstorm was bad– the worst sandstorm in 20 years, burying the crops and hayfields—but there’s worse. A ghost is haunting the town’s only remaining business, the Zappapalooza Saloon and Massage Studio, scaring staff and customers into hightailin’ it. And the worst fate of all has befallen the title character, a ghost with a curious connection to the town and great skill in optometry. Find out that fallen fate at The Ghost of Opposite Gulch!

Rising Sun Theatre is pleased to announce the return by popular demand of its premiere production of The Ghost of Opposite Gulch on Friday Dec. 4 @ 7 pm and Saturday Dec.5 @ 2 pm and 7 pm at SKILLS, 10408-124 St, SE, Edmonton, corner entrance. Admission is pay-what-you-can.

Continue reading

Monkee Armada on American Eugenics

During the summer, Monkee Armada put up a couple of posts on the “secret history” of American eugenics. While most of this is not exactly secret, there are some interesting details, especially about North Carolina. You can see part 1 here and part 2 (with it’s NC focus) right here.

One of the things that Monkee Armada focuses on are the demographics of eugenic sterilization in North Carolina, especially those of sex and race.  For example, 6/7 sterilizations were of women, and the proportion of those sterilized class as Black shifted from 23% in the 1930s and 40s to high 50s – low 60s during the 1960s.  But I’m curious as to whether the shift in racial sterilization rates was, seemingly like shifts in the sterilization rates of women (which approximated 100% during the 1960s) a function simply of sterilizing fewer members Continue reading

The 6th Pediatric Bioethics Conference of Seattle Children’s on ethical issues in prenatal and neonatal care in July 2010

Tiny Babies, Large Questions: Ethical Issues in Prenatal and Neonatal Care

 Sixth Annual Pediatric Bioethics Conference Friday and Saturday, July 23, 24, 2010

 Bell Harbor International Conference Center, Seattle, Washington

http://www.seattlechildrens.org/research/initiatives/bioethics/events/pediatric-bioethics-conference/

Dr. Norman Fost, who coauthored the Ashley paper with Dr. Diekema in AJOB this April, will be one of the speakers as usual. His presentation is titled, “Whatever Happened to Baby Doe? The Transformation from Under-treatment to Over-treatment.”

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.

Advice to a Young Bioethicist

Bioethics Baby

The following is the beginning of a response delivered by distinguished bioethicist Arthur Caplan to Ezekiel Emanuel’s address to the American Society for Bioethics and Humanities earlier this year. The full speech was posted by Linda MacDonald Glenn at the Women’s Bioethics Project blog about a month ago.

The issue: what kind of training do bioethicists need? More descriptively (if awkwardly): what is it important for the people providing advice on life and death decisions to parents, children (of aged parents), doctors, hospitals, and others involved in health care, to know?

What Sorts readers might also be especially interested in checking out Emanuel’s views of the legalization of euthanasia, and might recall the misrepresentation of those views in the recent discussions of Death Panels in the US.  Anyway, here’s Caplan’s speech, which provides much food for thought: Continue reading

The EyeWriter

This little tool kicks ass.  There’s no other way to put it.  Thanks to the EyeWriter development team, $50 and little hardware hacking will produce a fully functional eye tracker that allows the user to express themselves with art by only moving their eyes.  Check out the video to see for yourself: Continue reading

ACT UP NEW YORK: ACTIVISM, ART, AND THE AIDS CRISIS, 1987–1993

EXHIBITION: ACT UP NEW YORK: ACTIVISM, ART, AND THE AIDS CRISIS, 1987–1993

running until December 23, 2009; for an earlier What Sorts post on the ACT UP Oral History Project, click here

the exhibition poster below is worth downloading for both the images it contains and the schedule of events it lists.

Harvard exhibition of visual media in AIDS activism marks 20 year anniversary of the formation of ACT UP New York — Premiere of the ACT UP Oral History Project

exhibition poster pdf file

The Carpenter Center for the Visual Arts and the Harvard Art Museum present ACT UP New York: Activism, Art, and the AIDS Crisis, 1987–1993, an exhibition of over 70 politically-charged posters, stickers, and other visual media that emerged during a pivotal moment of AIDS activism in New York City. The exhibition chronicles New York’s AIDS Coalition to Unleash Power (ACT UP) through an examination of compelling graphics created by various artist collectives that populated the group. The exhibition also features the premiere of the ACT UP Oral History Project, a suite of over 100 video interviews with surviving members of ACT UP New York that offer a retrospective portal on a decisive moment in the history of the gay rights movement, 20th-century visual art, our nation’s discussion of universal healthcare, and the continuing HIV/AIDS epidemic. The exhibition opens just over 20 years after the formation of ACT UP and also marks the 40 year anniversary of the Stonewall riots, the defining event that marked the start of the gay rights movement in the United States. The exhibition ACT UP New York: Activism, Art, and the AIDS Crisis, 1987–1993 provides an opportunity to reinvigorate a debate around the realities of HIV/AIDS today, and about the links between visual art, political activism, health, and human rights.

ACT UP’s demonstrations in the late 1980s and early 1990s reflected the group’s outrage against a governing establishment that ignored HIV/AIDS as a national health crisis; that failed to secure funding for medical research, treatment, and education; that profited from inflated costs for therapeutic drugs; and that perpetuated homophobic misrepresentations of HIV and AIDS. Continue reading

Sesame Street Reaches Middle Age

sesamestreet-groupAs someone as interested as much in the sorts of people we as a society think valuable as in the processes that we use to produce more of those we value, and fewer of those we don’t, I was was struck by a brilliant post last week at Like a Whisper on a topic that might not be suspected of raising deep points about both these values and how we shape people to realize them: Sesame Street’s 40th anniversary. Like many people born in the past 50 or so years, I grew up on a steady diet of Sesame Street, initially in black and white in the back streets of Broken Hill, and later in full colour in the beach-laden northern suburbs of Perth.

I remember, quite vividly still, a particular episode that has made its way into family lore. My parents had decided that they needed to make a break from a gritty mining town in the outback of Western New South Wales for somewhere that at least had grass (really), or even water in visible supply, and took me on a trip with them east, touring through the eastern part of the state, through Tamworth (my first sight of real greenery), Port Macquarie, Coffs Harbour, and all the way up to Lismore, before torrential rainfall ended any more northerly ventures. While in Coffs Harbour, Sesame Street was doing its usual share of child-minding while my folks got on with other things. We were in some very cheap motel that included a coin-fed television, what we might think of as the early version of pay tv. Continue reading

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)
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Reading “Ashley Revisited: A Response to the Critics” by Dr. Dikema and Dr. Fost

Reading the article “Ashley Revisited: A Response to the Critics” written by Dr. Diekema and Dr. Fost and published in AJOB in April, I find same dishonesties repeated from the initial 2006 paper by Dr. Gunther and Dr. Diekema. I also find new pieces of information revealed for the first time and newly altered explanation. But it is quite interesting that the new information and explanation do not always coincide with their previous explanations and as a result, rather seem to have ended up in betraying or confirming their deception after all.

(I pointed out some of the mysteries and questions about the initial 2006 paper here by the way. )

1.  reasons and motivations

The authors are extremely dishonest again in explaining the parents’ motivations and the priorities among them. As I have already pointed out here, Ashley’s father repeatedly denied prolonging home care as any part of the reasons for growth attenuation. The parents did not have any “fear” that it would be impossible for them to care their daughter at home as she grew bigger. Continue reading

Facing Death

h/t John Wilkins at Evolving Thoughts, for an article in The Independent from a few years ago from Havi Carel, a philosopher with a rare, and at the time, recently diagnosed, disease. There are lots of philosophical reflections on disease and death, of course, and for another first-person reflection, this one from one of my close friends, Susan Babbitt, see her “This I Believe” essay for CBC, “Simplicity and Silence” from around the same time as Carel’s.

So, how long have you got?” The first time I was asked this question, I was dumbstruck. The horror of it, and the casualness with which it was asked, was too incongruous for words. Was it simply curiosity? Ignorance? A clumsy attempt to “connect” with me? What else could motivate someone to ask such a horrific question? Yet, it’s a question I have been asked again and again – by friends, acquaintances, even strangers who have seen me sitting in a café with an oxygen cylinder beside my feet.

Once you are ill, I realise, you become fair game. You slide down an implicit social ladder. Others begin to perceive you as weak and unimportant, an object of pity and fascination. In asking: “How long have you got,” they compress all their horror, anxiety, pity, and relief that this is someone else’s story. How else to explain how people find the obtuseness and cruelty to ask you – in so many words – “When are you going to die?”

I am not impressed. I feel like screaming like that old lady on The Catherine Tate Show: “What a fucking liberty!” To the people who really piss me off, I quote the figure from Wikipedia: five years. I watch them deflate, shoulders sagging, thinking: “How awful. Gosh, I’m glad it’s not me.”

To others, I provide the official figure: 10 years. For the full story, see The Independent.

The Encyclopedia of American Disability History

Cover of the Encyclopedia of American Disability HistoryThe new  1264-page Encyclopedia of American Disability History now appears to be shipping. Susan Burch is the editor of this massive, three volume Tome that retails for $295 (US) from Facts on File.  Burch is well known for her work in deafness, such as Signs of Resistance: American Deaf Cultural History, 1900 to World War II as well as her work more generally in the history of disability. Paul Longmore has also contributed a foreword to the book, and there is a very long list of contributors. Even I got to write a few entries,  including biographical pieces on two of my favorite people Barabara Waxman-Fiduccia and Dale Evans Rogers. Continue reading

New stuff on What Sorts website

Thanks to the work of John Simpson, the What Sorts Network website now has a new look, and lots of new content.  Of special note are the links to our past events, linking to captioned and often transcripted video footage from events we have sponsored over the past three years, the description of the Community-Research Alliance (CURA) project, Living Archives on Eugenics in Western Canada, whose funding is pending, and a friendlier introduction to the What Sorts blog, including direct links to about 20 popular and favoured named posts from the past 18 months.  Continue reading