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

The 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.

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. 

Lack Of Insurance May Have Figured In Nearly 17,000 Childhood Deaths In US, Study Shows

ScienceDaily (Oct. 29, 2009) — Lack of health insurance might have led or contributed to nearly 17,000 deaths among hospitalized children in the United States in the span of less than two decades, according to research led by the Johns Hopkins Children’s Center.

see here

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.

The Social Consequences of Disability

There is a very interesting opinion piece in the NYTimes this morning by a young man named Michael Jernigan, who was blinded in the Iraq war, about his problems fitting in at home as a person with disabilities and PTSD. The online reaction suggests that most people are missing Jernigan’s (interesting coincidence of names, eh?, in light of Kenneth Jernigan’s fame as an activist for blind people) larger claims about how our society is constructed–both socially and physically–not to allow people with disabilities to feel “at home.” Most people seem to be homing in on the PTSD and “how bad war is” angle. I’ve posted a comment to the website highlighting the larger social point.

Here’s the website for the opinion piece:

“The Minefields at Home,” by Michael Jernigan

http://homefires.blogs.nytimes.com/2009/10/25/the-minefield-at-home/#comment-6841

Training Elite Athletes

The University of Alberta, Faculty of Rehabilitation Medicine , as part of their Distinguished Speaker Series is sponsoring a talk

Applied Research to support the paralympic wheelchair athlete for Beijing

By Dr. Vicky Tolfrey, Loughborigh University, United Kingdom

Thursday, October 22, 2009 at 5 PM

2- 39 Corbett Hall

Refreshments to Follow

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,

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

Growth attenuation therapy in Australia?

A law firm newsletter in Australia has done a detailed legal analysis on growth attenuation for disabled children because “there is anecdotal evidence that such requests by parents may be increasing.”

 http://hwlebsworth.ensoconsultancy.com.au/health_sept09/growth-attenuation-therapy.html 

They advise doctors to consider its ethical appropriateness cautiously and warn them not to agree to provide the therapy without the proper legal procedures to obtain valid authorization for the treatment. But this all sounds so matter of fact and worries me. I hope this does not mean that an international growth attenuation experiment has already been started.

Ashley Revisited: A Response to the Critics

This is the official announcement of a new Target Article that has been accepted for publication in a forthcoming issue of AJOB.

============================
Ashley Revisited: A Response to the Critics
by
Douglas S. Diekema

LINK TO ARTICLE:
http://editorial.bioethics.net
============================

Open Peer Commentaries are now invited on this Target Article. Open Peer Commentary articles are typically between 500-1500 words and contain no more than 10 references. A guide to writing an Open Peer Commentary is available under the Resources section “Instructions and Forms” at http://editorial.bioethics.net.

We ask that by Wednesday, October 7th, you submit a short summary of your proposed Open Peer Commentary (no more than 2-4 sentences). Please submit your proposal online via the AJOB Editorial site, following the instructions provided there. We ask that you do not prepare a full commentary yet. Once we have evaluated your proposal, we will contact you via email to let you know whether or not we were able to include you on the final list of those to be asked to submit an Open Peer Commentary.

You will then have until Wednesday, October 21st, to submit your full Open Peer Commentary. Please keep in mind that, except for rare exceptions, authors are limited to one Open Peer Commentary per journal issue.

To help you decide whether or not you will be an appropriate commentator for the forthcoming Target Article, you may consult the abstracts below and access the complete article as a PDF file by going to the URL above. If you do not have Adobe Acrobat and are unable to read PDF files, you may download free Adobe Acrobat Reader software for any computer platform, at http://www.adobe.com .

AJOB and Taylor & Francis also assist Open Peer Commentators with disabilities by providing the Target Article in other formats on request.

We ask that you not reproduce or cite the Target Articles or Open Peer Commentaries on the Editorial web site, as they have not yet been edited for publication. Please cite only published materials from AJOB (as indexed at the Journal’s website, http://www.bioethics.net ).

============================
Ashley Revisited: A Response to the Critics
by
Douglas S. Diekema
==========================
ABSTRACT: The case of Ashley X involved a young girl with profound and permanent developmental disability who underwent growth attenuation using high dose estrogen, a hysterectomy, and surgical removal of her breast buds. Many individuals and groups have been critical of the decisions made by Ashley’s parents, physicians, and the hospital ethics committee that supported the decision. While some of the opposition has been grounded in distorted facts and misunderstandings, others have raised important concerns. The purpose of this paper is to provide a brief review of the case and the issues it raised, then address 25 distinct substantive arguments that have been proposed as reasons that Ashley’s treatment might be unethical. We conclude that while some important concerns have been raised, the weight of these concerns is not sufficient to consider the interventions used in Ashley’s case to be contrary to her best interests, nor are they sufficient to preclude similar use of these interventions in the future for carefully selected patients who might also benefit from them.
==============================

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

Ventilator rationing guideline

A guideline is being prepared by US health care officials to decide whose ventilators will be disconnected in case of swine flu pandemic. It is based on what is called the New York protocol, which “calls for hospitals to withhold ventilators from patients with serious chronic conditions such as kidney failure, cancers that have spread and have a poor prognosis, or ‘severe, irreversible neurological’ conditions that are likely to be deadly.”

Dr. Carl Schultz at the University of California at Irvine says, “The problem with lowering the standard of care is where do you stop? How low do you go? If you don’t want to put any more resources in disaster response, you keep lowering the standard.”

Read the ProPublica story below for details.

http://www.propublica.org/article/flu-nightmare-officials-ponder-disconnecting-ventilators-from-some-pat-923

“EUGENICS AND DISABILITY: HISTORY AND LEGACY IN WASHINGTON”

The Disability Studies Program at the University of Washington presents:

“EUGENICS AND DISABILITY: HISTORY AND LEGACY IN WASHINGTON”

A one-day public symposium examining the history and significance of eugenics in Washington, which in 1909 became the second state to enact a forced sterilization law. This event will provide a forum for dialogue about the eugenic past and its current implications.

Friday, October 9, 2009
9 a.m. – 3 p.m.
UW Tower Auditorium, 4333 Brooklyn Ave. NE, Seattle, Washington 98195

Registration is required. This event is free and open to the public.
Lunch will be provided at no cost to registered attendees.

To register and for further information, go to:
http://eugenics.washington.edu
Or contact Tammi Olson, tammio@uw.edu (email), 425-774-4446 (voice), 425-774-9303 (fax), 425-771-7438 (TTY).

For information about symposium content, email Joanne Woiak, UW Disability Studies Program, jwoiak@uw.edu.

To view the live and archived web broadcast of the symposium, go to www.UWTV.org.

The symposium will feature panel presentations by national and local scholars and advocates, addressing “Disability in the History of Eugenics” and “Perspectives on the Relevance of Eugenics Today.” The roundtable format will include ample time for audience discussion. The intended audience includes academics, community advocates, individuals with disabilities, clinicians, service providers, policy makers, and interested members of the general public.

Co-sponsors: UW Office of the Provost, UW Center for Genomics and Healthcare Equality, Seattle Children’s Treuman Katz Center for Pediatric Bioethics, DBTAC Northwest ADA Information Center.

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:

Human Kinds–The Categories of Sexual Orientation in Law, Science, and Society–Part 3

The wrap-up of Ed Stein’s talk at the Human Kinds symposium.  Here Ed talks a little about whether there are natural human kinds, whether male and female, or gay and straight, might be such kinds, and the relationship between such questions and  issues of gay rights.

Social Cleansing in Columbia

In the years between 2000 and 2005, it is alleged that social cleansing was common in Columbia. No one seems to know how many people were killed, details have emerged from a small number of cases while some alleged that these murders were almost daily events. The alleged targets of these killings were people known or thought to be homosexual, addicted to drugs, or mentally disabled. The alleged perpetrators were members of paramilitary militias. And it is also alleged that government prosecutors simply ignored the killings and allowed them to continue.

Human Kinds–The Categories of Sexual Orientation in Law, Science, and Society–Part 1

The first part of Ed Stein’s talk at the Human Kinds symposium on sexual orientation, especially in equal protection under US jurisprudence.

Did Governor Richardson get it roughly right about sexual orientation, as Ed claims?