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.

What Would Darwin Do?

For those who have followed the Annie Farlow saga on this blog (e.g., What Sort of Death for Annie?; Deathmaking by medical neglect; Chromosomal microarray analysis, newgenics, and Annie Farlow; Annie Farlow, Sickkids, and an Ontario Human Rights Commission hearing; Charles Smith, the Toronto Hospital for Sick Kids, and the Coroner’s Office; On Justice for Annie Farlow), it may be perceived that the case comes down to Darwinian rationalism versus religious or secular humanism. It is tempting to view this and similar issues as a conflict between those who would ask “what would Jesus do?” versus those who would ask “what would Darwin do?”

Disability Ethics Bibliography

As part of our Work at the Disability Ethics Project, we have just launched a new Disability Ethics Bibliography. There are currently just over 600 references with abstracts and annotations in a RefShare format that is easily searchable with downloadable results. Of course, this is only a small sampling of the relevant materials and the bibliography will continue to be a work in progress.

We welcome your help in helping us identify more of items to include. I you have additional items to suggest for the bibliography please contact us for instructions on submitting items at initativ@ualberta.ca

One parent’s thoughts on a late diagnosis

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.

Expert Group Meeting on Mainstreaming Disability in Millennium Development Goals (MDGs) policies, processes and mechanisms: Development for All

results from the meeting and background documents here

Institutional Dehumanization

Sometimes, in our current discussions of human variation in the age of genetic manipulation, it is easy to forget the central role of the environment  in shaping human behaviour. This video from United Nations Television provides a powerful example of institutional dehumanization and of the power of families and communities to overcome dehumanization.

A transcript follows the cut.

Schrödinger’s Cat & Donation after Cardiac Death

Quantum Ethics: Schrödinger’s Cat & Donation after Cardiac Death

Recent discussions of transplanting hearts from so-called DCD (Donation after Cardiac Death) patients into others (for example the recent Baby Kaylee saga at Toronto’s Hospital for Sick Children) raise serious questions that seem to only have explainable answers in the field of quantum physics. I don’t know if physicist Erwin Schrödinger actually had a living, breathing cat but the hypothetical cat that he proposed to illustrate a paradox back in 1935 to illustrate a paradox has certainly achieved fame.

How many years?

Article 7  of Canada’s Crimes Against Humanity and War Crimes Act of 2000 defines crimes against humanity and includes “enforced sterilization.” The Act implements the Rome Statute of the International Criminal Court of 1998. SO… it might appear that involuntary sterilization only was recognized as a crime against humanity in relatively recent history. But actually, Canada agreed to uphold  Charter of the London Agreement along with in August of 1945, and under that Charter the Medical Trials convicted Nazi doctors of crimes against humanity as early as 1947 for the the involuntary sterilization of German citizens with intellectual disabilities.

Following WhatSorts on Facebook

Facebook users may want to follow the WhatSorts blog and any other blogs of interest through the Facebook NetworkedBlogs application. It is easy and efficient way to keep up with the various blogs you follow. If you are interested and use Facebook here is how to get started (If you are interested but don’t use Facebook, you will need to register for Facebook first).

Author of “Disabled God” Dies

On March 21, 2009, The New York Times carried the obituary of Nancy Eiesland, 44,  theologian, perhaps best known for her 1994 book, The Disabled God: Toward a Liberatory Theology of Disability.

Call for Papers on Diversity – RPSD

CALL FOR PAPERS- Research and Practice for Persons with Severe Disabilities 

Announcing an upcoming special issue on diversity and individuals with severe disabilities.

Are you interested in persons with severe disabilities? Are you looking for a publishing opportunity? Why not publish in RPSD?

Changed by a Child?

7 March 2009 – West Oxfordshire, UK Six-year old Ivan Cameron, the son of David and Samantha Cameron, was buried  after a private funeral at the  Church of St Nicholas in Chadlington, Oxfordshire, on Tuesday, March 3rd. The choir sang “You are so beautiful to me,” in a service the Guardian called a celebration of Ivan’s life. It isn’t perfect but it contains some nice pictures of Ivan and his family.

This short video slideshow includes a some pictures the Cameron family along with a musical background.

What Sorts of Children’s Television Hosts?

 

Cerrie Burnell, Too frightening for preschoolers?

BBC Children’s TV has a show for preschoolers called CBeebies. The show includes a lot of interesting animated, puppetry, and other fictional characters as well as human presenters…  Alex, and Cerrie. Cerrie, however, has become the target of serious public campaign that claims she is frightening children.  

According to the Daily Mail:

 the decision to hire her has prompted a flurry of complaints to the BBC and on parenting message boards, with some of the posts on the CBeebies website becoming so vicious that they had to be removed.

Incredibly, one father said he wanted to ban his daughter from watching the channel because he feared it would give her nightmares.

Texas Turkeys in Iowa

About a month ago Spirit of the Time posted a piece on Whatsorts by Cindy de Bruijn called ‘Does Alberta’s “Minimum Wage Exemption” violate the Canadian Charter of Rights and Freedoms?’ Now an incredible news story from Iowa provides a chilling example of just how far wrong such an exemption can go. It starts with 21 Texas men who were described as mentally disabled and  receiving SSI (US Supplemental Security Income that the government describes as”designed to help aged, blind, and disabled people, who have little or no income”) income from the government.

Lebanese Whatsorts Rap

This Arabic rap, “Difference is Normal” was shot in Lebanon, Qatar, and Syria. Like the What-Sorts website it explores issues of human variation, particularly disability, but it does so through the haunting medium of Rap Music. It includes subtitles and there is a little sign language, but I don’t know which sign language it is. The particular version used in this music video was modified after the recent war in Lebanon and partly addresses the difficult issue of violence induced disabilities that result from war. That is how does society respect and treat the victims as individuals at the same time that we are trying to make martyrs and fuel outrage toward the other side.

the mustard seed presentation

Way back in 1990, three of us agreed to do a presentation at the TASH (Association for the Severely Handicapped) Conference in Chicago. I’d done a lot of presentations but this one was different. All three of us had been the parents of kids with severe disabilities, and all three of those kids had died. That was basically what our presentation would be about, three sad stories.