Most Britons think others view disabled people “as inferior”

& June 2009
In an online survey of more than 2,000 adults by leading pollster ComRes for disability charity Scope, 53 per cent say they think most people in British society see disabled people as inferior.

In addition more than half (56 per cent) said they think disabled people are generally viewed as “victims” or “figures of pity” and 38 per cent say they are even seen as a “drain on resources”.
see here press release

and here the survey

Modern Pursuit: Discussion

The final captioned videos from The Modern Pursuit of Human Perfection: questions from audience members, and responses from the panel. Questions from Rob Wilson, Michael Shaw, Anna Macquarrie, and Bruce Uditsky on vulnerability and trust in medicine, the disconnect with disability in medicine, ways in which parenthood is denied in contemporary society, the absence of true choice in many medical situations, and the systematic devaluation of people with disabilities are all discussed. And all with closed captioning. Enjoy

Connecting with others

Vulnerability, trust, and confrontation

Good people in medicine and the disconnect

The denial of parenthood and selective abortion

Going underground and true choice

Disability, individual autonomy, and systematic devaluation

For the full story, see this previous post.

Support Hannah Gunderson

Alberta Association for Community Living

Press Release Edmonton June 23, 2009 FOR IMMEDIATE RELEASE

School District Discriminates Against Child with Disabilities

The Alberta Association for Community Living (AACL) is appalled to find that Elk Island Public Schools is discriminating against Hannah Gunderson, a young girl with disabilities, by forcing her to be segregated from her friends, against the wishes of her parents and her school community, when she travels to school. In effect Elk Island School District is punishing a child with disabilities and separating her from her friends because she is unable to walk. At a time when Alberta Education has just completed a review of special education that calls for every student with special needs to belong and be included, Elk Island is instituting regressive practices that deny Hannah the right to be included. As a student with disabilities who cannot easily defend herself Hannah needs her friends to ensure her safety and protection. The research evidence is unequivocal in that segregation increases the risk of abuse and violence against children with disabilities. Elk Island Public Schools is increasing Hannah’s risk of harm by forcing her to be involuntarily segregated from her friends and classmates. Until this forthcoming school year Hannah was included on the same bus as her friends, traveling to school together and sharing in all the experiences of her peers as she grows up with them. This coming school year, without consultation with her parents, the Elk Island District unilaterally altered Hannah’s busing to her detriment. The School District and its Trustees have refused to reconsider this decision ruining a young child’s summer and that of her family as they anxiously consider a future where Hannah is deprived of the ordinary relationships most other families take for granted. Wendy McDonald, AACL President and a parent of a student with disabilities who is fully included, stated, “As a parent of a child with disabilities I know how hurtful this must be to Hannah and her family. As an Association representing many thousands of families with children with disabilities I call upon the Elk Island School District to demonstrate its capacity to listen, change and respond to the cries of a young child with disabilities.”

ACTION: Continue reading

a tool

this is about a tool I use and find works fine
free ways to video conference
like Skype but one can do more than one on one

and no software download needed

I tried it so far one on one. Quality was good. Not sure the more than one on one need some people to try with me
but if that also works that should be useful I think

http://www.tokbox.com

Cheers
Gregor

Parents in Hospital Lawsuit Offer Deal

from the National Post, by Joseph Brean, June 23rd, 2009. [NB: this doesn't fit completely with my own understanding of the case]

TORONTO – The small claims court lawsuit over the controversial 2005 death in infancy of Annie Farlow at Toronto’s Hospital for Sick Children was thrown into confusion yesterday when her parents, citing a “change of position,” dropped their opposition to a full-fledged Superior Court trial, but requested to be immune from any future order to pay the hospital’s costs, and offered to drop the case in exchange for a meeting with top hospital administrators.

Timothy Farlow told Judge Thea Herman that a number of recent events have convinced him and his wife, Barbara, that the systemic problems they believe led to Annie’s death at age three months, after complications from the genetic disorder Trisomy 13, have been largely resolved, and their goal of effecting change has been achieved.

The Farlows are suing Sick Kids and two doctors for $10,000, the maximum small claim, over alleged negligence and malpractice. Sick Kids and the two defendant doctors, pediatrician Dr. Michael Weinstein and critical care specialist Dr. Christopher Parshuram, are not seeking costs from the Farlows over their current motion to elevate the case into Superior Court. But Judge Herman said she is likely powerless to prohibit some future trial judge from ordering the Farlows to pay costs.

Read the full story here. For more on the broader context of the story, see the Justice for Annie Facebook group or search the What Sorts Blog.

A child’s death, a legal odyssey

from the National Post, by Joseph Brean, June 22nd, 2009:

When Barbara Farlow stands, self-represented, in a Toronto courtroom this morning to hear a judge’s decision in her $10,000 Small Claims Court action against Toronto’s Hospital for Sick Children over the controversial 2005 death of her baby Annie, there are two equally dramatic possibilities.

Judge Thea Herman is to decide on a request by Sick Kids and two defendant doctors to elevate the case to Ontario Superior Court, with its stricter procedural safeguards and rules of evidence. If Mrs. Farlow wins, the case will proceed as a “small claim,” and two doctors at Canada’s top pediatric hospital will not only have to defend against allegations they deliberately killed a baby because she had a fatal genetic abnormality, but they will do so in a forum designed for minor disputes over unpaid bills, encroaching fences and overhanging trees.

Read the full story here.  For more on the broader context of the story, see the Justice for Annie Facebook group or search the What Sorts Blog.

Vehmas and Sobsey commentaries: now captioned

Below are the short commentaries–now closed captioned–delivered by Professors Simo Vehmas and Dick Sobsey as part of a panel discussion on the theme The Modern Pursuit of Human Perfection: Defining Who is Worthy of  Life.

Bioethical Reflections on Disability, Medicine, and Family Life (Simo Vehmas)

Decisions and Dishonesty in Medicine (Dick Sobsey)

Simo is one of Finland’s leading bioethicists who joined us for the panel discussion, while Dick is one of the world’s authorities on violence and disability and runs the ICAD blog.  The short panel presentations that are the basis for these commentaries–by Wendy Macdonald, Sam Sansalone, and Colleen Campbell–can be heard and viewed (now that they are also closed captioned)–in this post, which also contains more information about the event as a whole.  These should be useful to some of you for teaching, for community discussion, or just for private reflection on the ways in which eugenic or newgenic thinking can be found immersed in ongoing medical practices and cultures surrounding the treatment of people with disabilities.

Next up: the audience-panel interactions, which I’ll post in the next week.

200 Million Women are Missing

from the Stop Violence Against Women blog, a compilation post, the whole of which can be read right here:

Recent research indicates multiple possible causes for the disappearance of millions of women, or “missing women,” worldwide. The term “missing women” describes women who are dead in excess of natural mortality rates, as compared to males. Since an article by Amartya Sen appeared in 1990 which revealed that approximately 100 million women are missing worldwide, the UN has estimated that as many as 200 million women are missing.  Researchers Siwan Anderson and Debraj Ray recently wrote a paper detailing their findings after studying rates of “missing women” in India, China, and Sub-Saharan Africa.

Siwan Anderson teaches at the University of British Columbia, and was interviewed about this work this week on Michael Enright’s The Sunday Edition (the podcast for this will be up on the CBC site later this week–the interview is about 35 minutes into the program).

The new growth attenuation paper by Dr. Diekema, Dr. Fost with others

I read the full text of the growth-attenuation paper written by Dr. Diekema and Dr. Fost with others in the June issue of the Pediatrics. So many questions and mysteries again. I will point out some of them here for now. Some of the questions and mysteries will be reviewed more closely in my future posts.

1. The authors’ definition of profound cognitive disability “for purpose of growth-attenuation therapy” is not totally about cognitive disabilities but mostly about physical disabilities. It disguises the fact that growth attenuation is in fact a therapy that addresses problems caused by severe physical disabilities, not by cognitive disabilities, which they have been using as a convenient excuse for justification. But maybe we should also note that the authors didn’t forget to add “for present time” when they wrote that it should be limited to children with profound cognitive disability.

2. Their justification for excluding hysterectomy and breast bud removal from discussion is something like this: Criticism was mostly targeted at hysterectomy and breast bud removal in the Ashley case controversy in 2007 (implying maybe that growth attenuation was not all that criticized and pretty much approved?), and in addition, growth attenuation does not necessarily accompany the other two interventions. But these are lame excuses. Continue reading

Thinking about Incest: The Whole Shebang

While I was hoping to write up a little more on incest, incest avoidance, and related issues, other matters have called for my attention, and so I think that will be all the posts in the Thinking about Incest series, at least for the forseeable future. Sigh. So here are the 11 posts in this series, collated for your viewing pleasure. As you’ll see from the titles, this is mostly about the Westermarck Effect, the phenomenon of genetic sexual attraction (made prominent through “reunion” cases of incestuous desire), and views of incest within the social sciences.

1. Forbidden Love

2. Genetic Sexual Attraction and incest

3. Westermarck, Fritzl, and incest

4. Getting more explicit about the Westermarck Effect

5. Just how encompassing IS the Westermarck Effect?

6. Westermarck on parental love

7: A Westermarckian cluster

8: Primate evidence and anthropology

9: Avoidance and taboo

10: Rules, rules, rules

11: Saving the Viennese witchdoctor

Philosophy PhD position in Bioethics Within the project ENABLE – Protecting Vulnerable Persons in Health Care

Institute for Biomedical Ethics, Geneva University Medical School

Philosophy
PhD position in Bioethics

Within the project ENABLE – Protecting Vulnerable Persons in Health Care (supervisor: Samia Hurst), the Institute for Biomedical Ethics at the University of Geneva Medical School is opening one PhD position for a philosophy doctoral candidate. This project is
funded by the Swiss National Science Foundation. In collaboration with the project supervisor and within an interdisciplinary team, the successful candidate’s work will explore how vulnerability in health care can be defined analytically, as well as sources of claims for protection of the vulnerable, how convincing they are, and what effect their validity may have on fairness in resource allocation decisions. Projected duration for this position is four years.

Salary is according to the University of Geneva scale (A2 assistant, 70%, approx. 46’000 CHF per annum the first year). Within
this time frame, the successful candidate will be expected to complete a PhD thesis in philosophy under the (co-)supervision of Bernard Baertschi, on a topic broadly within the area of normative ethics and/or applied ethics.

The ideal candidate should have a Master’s degree in philosophy or equivalent, including courses in bioethics, normative ethics, applied ethics, and/or political philosophy, and at least intermediate mastery of written English.

Please send your CV, a writing sample, and letter of motivation to: Samia.hurst@unige.ch
Before: August 15th 2009
Any relevant publications (max. two) should be attached to the application and will be considered an asset.
Interviews will be held in September.

– Dr Samia Hurst Institut d’éthique biomédicale CMU/1 rue Michel Servet 1211 Genève 4 – Switzerland Tel: +4122-3793479 Fax: +4122-3793472 Blog: http://forumethix-ch.blogspot.com/ Homepage: http://ib.unige.ch/SH_homepage.php SGBE-SSEB: http://www.bioethics.ch/content/default.htm

One parent’s thoughts on a late diagnosis

dna spiral

Graphic representing DNA

A few weeks ago our son who has severe and multiple disabilities had no specific diagnosis. Now, we seem to have hit the diagnosis Jackpot. After being undiagnosable for 18 and half years, he now has approximately 25 highly specific diagnoses as a result of a “miracle of modern science,” AKA Chromosomal Microarray Analysis. Continue reading

Modern Pursuit of Human Perfection talks: now captioned

In October 2008, the What Sorts Network and the “From Archives to Activism” project in that network cosponsored a public dialogue, The Modern Pursuit of Human Perfection, with three of our community partners: the Alberta Association for Community Living, the Canadian Association for Community Living, and Neighborhood Bridges. The event was held at the University of Alberta on October 23rd, 2008, and was open to the public and filmed. It formed part of a series of public events we put on that continued on Friday and Saturday, including an invited symposium at the Western Canadian Philosophical Association on Philosophy, Eugenics, and Disability in Alberta and Places North that kicked off with this talk from Dick Sobsey, director of the John Dossetor Health Ethics Centre at the University of Alberta and a leading authority on violence and disability. (We’re still in the process of moving from transcripts to captioning for these talks.)

The public dialogue began with some opening comments from our cosponsors, continued with short presentations from our community member panelists talking of their personal experiences with medicine, disability, and social services, and was rounded out by a series of interchanges between audience and panel. All videos now contain both transcripts and closed captioning (thanks to Jackie Ostrem for completing the work needed here), and the videos are also available directly on YouTube. Since the closed captioning has just been added, and will make the videos here more accessible for classroom and community use, we’re running them again on the blog in three or four chunks, the first of which is below and contains all of the short narrative stories at the core of the dialogue. Comments on the blog on any of these posts is still welcome, but we also hope that you’ll find these of interest and use down the track for individual reflection or group discussion. Each video is cut to “Youtube size”, i.e., less than roughly 10 minutes, which, apart from fitting the attention span of the Youtube generation, also packages the discussions here more aptly for classroom discussion.

Thanks to all participants: Anna Macquarrie, Bruce Uditsky, Dick Sobsey, Wendy Macdonald, Sam Sansalone, Colleen Campbell, Anne Hughson, and Simo Vehmas. And thanks to Grant Wang and Lee Ramsdell at the Arts Resource Centre at the University of Alberta for the filming and post-production work; to John Simpson for organizational assistance; and to Jackie Ostrem for the transcriptions and captioning.

Introduction (Anna Macquarrie and Bruce Uditsky)

My doctor, my child (Wendy Macdonald)

Living with trisomy 13, part I (Sam Sansalone)

Living with trisomy 13, part II (Sam Sansalone)

When disability meets social welfare (Colleen Campbell)

On the new growth attenuation paper

Thank you for your wake up call, Spirit of our time, and thank you also for inviting me to write here.

I share the concerns about the new growth attenuation paper that Spirit of our time expressed in his latest post. I also find his advice to read carefully and slowly totally relevant not only when you read his version of the abstract but when you read the original abstract as well.

There are some particular expressions that worry me a great deal, such as “the scientific rationale,” “informed responses to key clinically relevant questions,” and “potential clinically meaningful benefits of growth-attenuation therapy.” The implication here seems to me to be that this is a medical issue for doctors to consider scientifically, not for the court or the disability rights advocates to interfere with. That reminds me of Norman Fost’s pet theory that the court should have no say in medicine.

I also wonder if they are trying to ward off criticisms from disability studies or disability rights activists by confining the issue within medical argument. But then it also makes me wonder, as Spirit of our time has pointed out, what the working group discussion was all about . The WG had their first meeting in April 2008 and had revised draft (of whatever it might be) circulated for comments in December 2008. I wonder if the WG members were aware, while working as a group, of the fact that three of them were writing a paper independently to maintain that it is a safe and beneficial therapy to be recommended as one of the future choices for profoundly disabled children when they are around 3.

I’m trying to post a list of links to information about Norman Fost in my blog as soon as possible. But for now, you can get a quick idea of Norman Fost’s views by visiting the 2007 Pediatric Bioethics Conference page on the Seattle Children’s site and watch the webcasts of his presentations. Continue reading

WAKE-UP CALL: Growth-Attenuation Therapy: Principles for General Practice

Below is an abstract from a paper that has just appeared at a prestigious pediatrics journal. It alludes to the Ashley X case in the first sentence, and advocates more widespread use of the high-dose estrogen treatment used there. Read CAREFULLY, and slowly:

Publication of an account of growth attenuation with high-dose estrogen in a child with profound physical and cognitive disability brought widespread attention to a common and complex issue faced by families caring for all children, namely, the potentially negative effect of the increasing size of a child on the ability of his or her family to provide independent care, which in turn makes it more difficult for parents to keep the child in the home and involved in family activities. In this article we explore the scientific rationale for, effectiveness and safety of, and ethical considerations bearing on growth-attenuation treatment of children without profound and permanent cognitive disability. Informed responses to key clinically relevant questions are proposed. Our analysis suggests that growth attenuation is an innovative and sufficiently safe therapy that offers the possibility of an improved quality of life for ambulatory children without profound cognitive disability and their families. Pediatricians and other care providers should include discussion of these options as part of anticipatory guidance around the age of 3 years so that, if elected, potential clinically meaningful benefits of growth-attenuation therapy can be realized. Because of the publicity and debate surrounding the first reported case, ethics consultation is recommended.

Let’s go to it pediatricians! Continue reading

On Justice for Annie Farlow

The following letter was sent today regarding the case of Annie Farlow. For more info, see www.anniefarlow.com and the Facebook group Justice for Annie. Those who share the concerns expressed in the letter, especially those in Ontario, are encouraged to contact their MLAs or the Premier about the case and express your concern.

The Honourable Rick Bartolucci
Ministry of Community Safety & Correctional Services
25 Grosvenor St,18th Flr
Toronto ON M7A 1Y6
Tel : 416-325-0408     Fax : 416-325-6067
Toll Free: 1-866-517-0571           2nd June, 2009.

Dear Mr. Bartolucci,

I am writing to you directly in the matter of the case of the death of Annie Farlow, a case with which I believe you are familiar. I am a university professor, a Canadian citizen, and was formerly a resident of Ontario, when I taught at Queen’s University in the 1990s. I have become familiar with many details from the case through my work as the founder and coordinator of the What Sorts of People Network, a large-scale, Canadian-based network of about 80 scholars, teachers, and community organizers with a focus on issues in which disability, health, and technology intersect. I have read and reviewed much about the Farlow case, including much of the correspondence that has passed between the Farlows, the hospital, and government offices, including your own. I have grave concerns about the case, some of which directly concern your Ministry, although they are not yet concerns about the Ministry as such.

While there are many aspects of the treatment and death of Annie Farlow in the country’s leading hospital for sick children that I believe should be of concern to the average Canadian citizen, my reason for writing is to convey to you directly my view that the position that your Office has taken regarding both the decision not to compel the Office of the Coroner to provide the Forensic Audit Report, and the subsequent decision to decline the parents’ request for a disinterment of their daughter’s body, should be reconsidered.

This is a case in which there are major and significant doubts about the cause of the death of an infant while under the care of the hospital, about the subsequent integrity of coroner’s own report, and about what appears to be an unlawful refusal by the coroner to provide information to which the family is lawfully entitled (section 18.2, Coroner’s Act of Ontario). Continue reading

Charles Smith, the Toronto Hospital for Sick Kids, and the Coroner’s Office

h/t to Harold Levy at The Charles Smith Blog, where more detail can be found:

Peter Kormos, justice critic for the NDP in Ontario, recently delivered a scathing indictment in the Ontario Legislature of the handling of the case of Dr. Charles Randal Smith, a paediatric pathologist (posing as a forensic pathologist) whose actions led to the wrongful imprisonment of many innocent people in relation to infant deaths that he investigated. Here is an excerpt–the story, as one might suspect, is not just about Smith:

This guy Smith, for 24 years, while working for the Hospital for Sick Kids just down the road, lied and bungled his way through countless prosecutions of people charged with injuring and, more tragically, killing children, babies-countless unjust convictions. We’re not talking about people who are sentenced to a couple of weekends in the local lockup; we’r e not talking about people who are sentenced to house arrest; we’re talking about people who, almost inevitably when you murder a child, are sentenced to penitentiary time, where they do what is called colloquially “hard time.” Let me tell you, when you’re a baby killer, you’re pretty darned close to the bottom of the ladder. Even in protective custody, you’re a victim. Some of those people have been successful in having their convictions overturned. None of them will ever be successful at having their losses restored.
What bothers me significantly is how Smith could flourish-he did for 24 years. Was his stellar batting record not of some concern to crown attorneys? Was his stellar capacity to indict and convict people accused of killing children not of concern to the police officers themselves, for fear that they had picked the wrong person to be charged? Was Smith’s capacity to find criminal culpability with the named accused not of concern to judges?

Smith didn’t work in a vacuum. What about the coroner? Continue reading