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/) Continue reading

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: Continue reading

“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. Continue reading

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

image002 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

Continue reading

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, Continue reading

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.