Documentary on Ashley Treatment

22 May 2012 Disability Rights Washington and Video Galaxy  have great new video  on the Ashley Treatment on their website. There is also a poll on this page asking whether you believe more safeguards are needed to protect the civil rights of people with disabilities from civil rights violations and medical discrimination of the Ashley Treatment and related procedures.

Canada’s Live Euthanasia Debate Tonight

15 March 2011 Tonight from 8 to Midnight Eastern Time Global News is hosting a live blog on whether it is a good idea for parents to be permitted to kill their children who have severe disabilities. The three-person panel that they have assembled for this are all advocates for euthanasia of people with severe disabilities, including convicted murderer Robert Latimer. Please consider taking part in this, and if you think killing people with disabilities is a bad idea, please say so. Also please let others who care about this issue know about this.  Global’s information about this “Taking Mercy” event can be found here. This debate directly will address the question of “What Sorts of People Should there Be?”

Kidney Transplant Denied

The parents of a young girl with Wolf-Hirschorn syndrome claim that she was denied a kidney transplant solely on the basis of her intellectual disability at the Children’s Hospital of Philadelphia. The mother’s account of her interaction with the social worker and physician is very specific. There seems to be little room to conclude maybe there was some other reason for the denial. Medical Ethicist Art Kaplan’s poll goes right to the heart of this. While Kaplan concludes, “But those reasons, to be ethical, have to be linked to the chance of making the transplant succeed. Otherwise they are not reasons, they are only biases,” the poll on the page asks simply, “Do you think a mental disability is a valid reason to deny a transplant?” If you have an opinion consider responding to the poll.

60 Minutes NZ: Down syndrome eugenics?

A segment to me aired on 12 June 2011 on TV3′s 60 Minutes explores whether new prenatal testing programs in New Zealand to detect Down syndrome during pregnancy  is a form or eugenics.

Visual History

Here is an interesting approach to recording visual history.

For the past 3 years Leah and Lynn have been creating installations based on a common interest in life stories.

Click on picture to visit their site.

Human Genome at 10

It has now been 10 years since the the announcement that the mapping of the human genome was complete. There is little doubt that this was an incredible and conceptually significant scientific accomplishment. The project, however, has so far been almost a complete failure in achievement or even meaningful progress toward its primary stated goal, to make rapid and substantial headway in preventing, diagnosing,  and treating human disease as a result of our new knowledge.

Life and Death Matters

Life and Death Matters: The Immediate Threat to People Who Have a Disability and the Need for Action is a one day event that will be held in conjunction with the 57th Annual Conference and Annual General Meeting of the Ontario Association for Community Living on Friday May 28, 2010 in Richmond Hill, Ontario. Some of the Presenters (e.g., Barb Farlow, Catherine Frazee, and Dick Sobsey)  will be familiar to followers of the What Sorts Project and Blog.

Paul Lombardo at the University of Alberta

Paul Lombardo, Professor of Law at Georgia State University’s College of Law,  Center for Law, Health and Society, will be the featured guest at the University of Alberta’s History of Medicine Day on Saturday, March 27. He will be speaking on Eugenics and the law in his keynote address:

Three Generations, No Imbeciles: American Eugenics and the Carrie Buck Case

This is an opportunity to hear a world-class authority on the history of Eugenics.

Inclusive Post-Secondary Education

Alberta is a Province of contrasts. While Alberta’s role in sterilizing people with Developmental Disabilities as late as the 70s is infamous, Alberta also deserves kudos to for providing the world’s first inclusive post-secondary education program for people with developmental disabilities in the 1980s, and the On Campus program continues today, 23 years later at the University of Alberta. Alberta now boasts inclusive post-secondary education programs at 17 colleges and Universities across the Province and maintains an international leadership role in the field. Unfortunately, these programs sit precariously on the chopping block today as Alberta faces financial difficulties.

Canada’s Paralympic Raisin in the Sun

What happens to a dream deferred?

Does it dry up like a raisin in the sun?

—Langston Hughes

On December 3, 2009, The International Day of Persons with Disabilities, Canada tabled in the House of Commons the United Nations Convention on the Rights of Persons with Disabilities. According to Minister of Defense Peter McKay who tabled the Bill:

The government’s tabling of the Convention on the day the United Nations officially designates the International Day of Persons with Disabilities demonstrates Canada’s strong commitment to removing obstacles and creating opportunities for persons with disabilities.

The government indicated that this was important legislation and that it would work to pass the Bill in time for the Paralympic games in February.This certainly was a lovely dream.

Heidi Janz Wins 2010 Tanis Doe Award

Heidi Janz wins Tanis Doe Award

Dr. Heidi Janz received word this morning that she has been selected by the Canadian Disability Studies Association that she has been selected as the recipient of the 2010 Tanis Doe Award for Canadian Disability Study and Culture. This annual award was first given in 2009 and honors activist and scholar Tanis Doe who died in 2004. According to the Canadian Disability Studies Association:

This award honours an individual who dares to “speak the unspeakable” in advancing the study and culture of disability, and who has enriched through research, teaching, or activism, the lives of Canadians with disabilities.

Tanis Doe, a Métis (Ojibway/French Canadian) Deaf woman, who was a wheelchair user in the later part of her short life, received her Doctoral Degree from the University of Alberta, before going on to hold the Ed Roberts Post-Doctoral Resreach fellowship at the University of California- Berkeley, being appointed a Fullbright Scholar in Bioethics at the University of Washington, and teaching at several other universities, including her final post at the University of Victoria.

The incidentalome and the genome

For those of you who have been concerned about the implications of the human genome and the emergence of the human metabolome, there is another strange new creature born of modern science and  roaming our planet, the incidentalome. The incidentalome is a bizarre creature without clearly defined shape or form but it is not certainly not mythical. Kohane, and others have described the incidentalome as the universe of all possible incidental findings. While this universe of possibilities is not new, its boundaries are rapidly expanding as diagnostic procedures have evolved substantially.

Ashley… effects of estrogen on weight

Many people have pointed to the conspicuous absence of  an mention of Ashley’s mastectomy in Diekema and Fost’s (2006) article on growth attenuation. There is another conspicuous absence that has not received the same attention. The authors provide no data about Ashley’s weight. This absence is troublesome since the author’s justify the procedures by indicating that Ashley was getting much larger and the primary concern was that she would become to heavy to be cared for by her family. However, they provide information about Ashley’s height before and during treatment but nothing about her weight.

How heavy was Ashley? Did her treatment succeed in attenuating her weight?

Ashley Revisited… American Journal of Bioethics

Today,  12 January 2010, the American Journal of Bioethics published 30 more pages of material on the Ashley X Growth Attenuation controversy. Approximately the first half of these pages are Diekema and Fost’s “response to critics” and the remainder is comprised of nine brief peer commentaries on the  Diekema and Fost article.

Predictably, Diekema and Fost vigorously defend the “Ashley procedures.” They categorize and, in some cases, mischaracterize the many critical arguments against the procedures into 25 objections, determine that some have substance, and then provide counter-arguments to in an attempt to dismiss all 25.  In my opinion, one of the problems with this approach is that they attempt to play three roles. They present their own side of the issue, present the opposing view, and then set themselves up as objective  judges of the two arguments. Not surprisingly, they find themselves to be right and their critics to be wrong. Thankfully, the American Journal of Bioethics provided an opportunity for peer commentary. Of course, not all the commentary directly opposes the procedures, but most of it does.

What sorts of Day for Persons with Disabilities?

3 December 2009 – Well here we are on December 3rd, The International Day for Persons with Disabilities. The United Nations and The World Health Organization have set this year’s goals as making the Millennium Development Goals inclusive. In New York, U.N. Secretary-General Ban Ki-moon announced the appointment of Stevie Wonder as a 11th United Nations Messenger of Peace, even though they were forced to evacuate the building during Wonder’s acceptance speech.

Here in Canada tabled the Convention on the Rights of Persons with Disabilities, today. This is a step forward, but it also stands in sharp contrast to the realities for many in Canada today.

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.

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

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.

Sustainable Family Care Forum

This post is intended mostly for parents of children (including adult children) with disabilities and other family members in their families. There is a new web-based discussion group called the Sustainable Family Care Forum that is part of  research project that examines how families balance the demands of work and other life challenges with their roles and responsibilities of raising children with disabilities.  If you are a parent or family member who might be interested in taking part, please take a look at the forum and consider joining in. If you know  of others who might be interested, please pass on this information to them. Thanks!

Obama to Sign Convention

This week U.S. President Barrack Obama announce plans to sign the United Nations Convention on the Rights of Persons with Disabilities. This  fulfill a campaign promise that President Obama made prior to his election.