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

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.

Like a Whisper on Transgender Day of Remembrance

Check out this (amazing and depressing) post by Prof Susurro at Like a Whisper

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:

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.

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

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:

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. ACT UP’s successful campaign to achieve concrete changes in legal policy and medical practice prompted changes in clinical trials for antiretroviral drugs and prodded pharmaceutical companies to reduce the cost of these drugs. The group also transformed culturally entrenched ideas about sexuality and civil rights and is largely credited with originating and promoting safe sex education.

Sesame Street Reaches Middle Age

As 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.

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.

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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

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.

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. 

DisRespect interviews with Barb Farlow, Sam Sansalone

I’m re-posting this May 15th post, since Disrespect has just re-run an interview with Sam Sansalone about his daughter Katya from earlier this year. The directions below will allow you to get to Sam’s interview, which was re-run on 22nd October; the podcast should be up there for the next few weeks. The two are related not only in that the children have the same genetic condition, but were also treated in similar ways by the same hospital.

Below is the original blog post on the interview that DisRespect did in May 2009 with Barb Farlow and me on Barb’s daughter, Annie Farlow; it includes a transcript of the interview. If you want to see the footage of the talk that Sam gave, referred to in his interview, you can go to the post The Modern Pursuit of Human Perfection: The Full Story and then click on the two Living with Trisomy 13 posts within it. These videos are all now closed captioned and also include transcripts, thanks to Jackie Ostrem

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Many of you have likely been following the case of Annie Farlow (Here is a listing of all our Annie Farlow posts) and were looking forward to listening to yesterday’s radio interview of Barb Farlow and Rob Wilson by Geoff Langhorne. If you are unfamiliar with the case then this interview should provide a succinct introduction to the details of the case in an accessible form. The one thing perhaps unclear in the interview is that Annie was NOT a newborn, but 80 days old, and went in to the hospital 24 hours before her unexpected death. You can also get more from the recently-formed Justice for Annie Facebook group, which you’re welcome to join (it’s a closed group, which means you have to apply to join it), and the Annie Farlow website linked there.

The interview was broadcast on the CFMU (McMaster Unversity Radio) program DisRespect (Here is a little about the show and the program’s host) and is available for listening/download by doing the following:

1. Go to the CFMU website (http://cfmu.msumcmaster.ca/)

Royal Society of Canada Expert Panel on End of Life Decision Making

The following expert panel has just been announced. Given that Bill C-384, legalizing euthanasia and assisted suicide in Canada, is scheduled to receive its second hour of debate on November 16th, and to be voted on on November 18th, the announcement of the panel is timely (even if largely ineffectual w.r.t. that debate and vote).

Text of the announcement in French and English below. It includes description of the membership of the panel, it’s terms of reference, and contact information.

RSC/SRC Expert Panel on End-of-Life Decision Making October 27, 2009

Among the many public-service roles of national academies around the world, one of the most important is the preparation of expert assessments on critical issues of public policy. The national academies in the United States are the most active in this regard, but the senior academies in other nations, notably in England, France, and other European countries, have been very active on this front for many years. Such reports are designed to be balanced, thorough, independent, free from conflict of interest, and based on a deep knowledge of all of the published research that is pertinent to the questions that have been posed. The Royal Society of Canada (RSC) also has a long record of issuing definitive reports of this kind, either on its own initiative, or in response to specific requests from governments or other parties. The project being announced today, “End-of-Life Decision Making,” is one of a new series that the Society has commissioned, at its own initiative, on issues of significant public interest and importance at the present time. Announcements on the other projects will follow over the course of the coming months. The Society relies on the advice of one of its senior committees, The Committee on Expert Panels (CEP), in formulating new projects of its own and in responding to requests for panel projects from external parties. In addition, the members of the Society’s CEP are responsible for selecting the membership of panels, including the chair; overseeing the conduct of panel activities; managing the peer review of the draft final report; and assisting the panel members with any difficulties that arise during the conduct of their work. Over the course of the past year, the CEP has brought forward suggestions on a new series of expert panel reports for consideration by the Society’s governing board. The board has approved a number of these suggestions, including the project on “End-of-Life Decision Making.” The additional information, below, identifies the members of the panel who have agreed to write this report, as well as the preliminary terms of reference for this project. Questions about this project may be directed to:

“Flawed” crusaders

The following letter by What Sorts Network member Nick Supina III, an Edmonton-based artist with a cognitive disability, was published in the Edmonton Journal on Sunday, 25th October, 2009, in response to an article by Paula Simons on October 13th.  Nick’s letter can be viewed at the journal site right here.  Congratulations to Nick on getting the letter published!

Re: “Posthumous Senate appointments bittersweet victory,” by Paula Simons, Oct. 13.

Paula Simons applauds Canada’s Senate for naming Alberta’s “Famous 5″ suffrage pioneers as honourary senators to mark the 80th anniversary of the landmark “Persons Case” ruling, which established that Canadian women were “persons” with the right to hold public office, including a Senate appointment.  To her credit, Simons acknowledged that some of these appointees were “staunch advocates of Alberta’s despicable eugenics program of forced sterilization of people deemed ‘unfit to breed.’ ” Simons also wrote, “Certainly, it is one of the painful ironies of Alberta’s history that some of the same crusaders who led the flight for votes for women, then turned around and used the political power they had won to undermine the human rights of some of the most marginalized and vulnerable citizens.”

To know the history of eugenics is to know the “eugenics irony” is more than that which Simons acknowledged.

Annie in the House, Ontario

Update: This questioning just took place, from 11.26 – 11.29am EST. Dunlop asked Minister Bartolucci, in his follow up question, why B had defended a coroner’s report that was acknowledged not to account for all the narcotics, and to have relied on putative documents that, in all likelihood, do not exist. The reply?: as Minister–i.e., the person to whom the coroner is directly answerable–he defers to the experts, and the expert in this case is the coroner. Does anyone smell something fishy?

If we can get a transcript of this, or the clip itself, we’ll post it.

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Here is the link to some live-streaming of questioning from Garfield Dunlop in the Ontario Legislature about the Annie Farlow case. Questions 10.30 – 11.30am Thursday 1st October, EST:

http://www.ontla.on.ca/web/go2.jsp?Page=/webcast/webcast_main&locale=en

Nationalized Child Care in Canada?

In the last two federal elections in Canada, there was a fair bit of umming and aahhing about improving national daycare standards. And with all the hooplah about socialized medicine from our good neighbour south of the border, this promotional video is surely timely:

h/t to Fiona Cowie

Eugenics, Health Care, and the Government

As debate has raged over nationalized health care in the US–i.e., the kind of health care that the rest of the wealthy part of the world enjoys–there have been more than a few smart, savvy, and evocative interventions in the webosphere. Here’s one, linking the history of eugenics in North Carolina, about which we have blogged here, with “government health care”

Make no mistake about it: stories like the one told in the video are sadly common, though neither commonly told nor known. Eugenic sterilization continued until the 1970s and even 1980s in a number of North American jurisdictions. Although the particular groups of people disproportionally sterilized (relative to their numbers in the population) varied from place to place, there were two commonalities: