Reflections on World Down Syndrome Day 2014

March 21st is World Down Syndrome Day, and 2014 is the ninth year in which it has been held, and the third in which it has been recognized by the United Nations. I want to start this post with an already-widely viewed video from CoorDown that has been up for less than a week, and step back from there.  The video is called “DEAR FUTURE MOM”:

At the time of writing, this video had been viewed over 1.6 million times in 6 days, with over 500 comments on it.  It’s clearly designed to be emotional and to directly send a number of messages, including at least these: anxieties about having a child with Down syndrome are understandable but overblown; children with Down syndrome will likely bring much joy and richness to the lives of any family they are in, and particularly to mothers; and Down syndrome does not obliterate or subhumanize the person who has it.

The need for those messages, and perhaps others, to be sent, loud and clear, is grounded in the sad fact that parental fears associated with potentially having a child who will have Down syndrome are amongst the highest risk factors for people with Down syndrome.  This is because Continue reading

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Disability on Television: Family Guy

The following excerpt is taken from an article that was published on August 27, 2010.

The National Down Syndrome Congress of the U.S. is taking Emmy organizers to task for nominating the song Down Syndrome Girl for an award for outstanding original music and lyrics.  The song was sung by Baby Stewie on the satirical animated show Family Guy in an episode broadcast in February.  There was outrage when the episode was shown, and Down syndrome advocates became more concerned after the song picked up still more viewers on YouTube. The Emmy nomination added to the insult.  “It goes through a litany of stereotypes that people with Down syndrome have been fighting for years, and so self-advocates stood up and said ‘we’ve had enough,'” Carol Bishop Mills, a member of the board of the National Down Syndrome Congress, said Friday in an interview with CBC’s Q cultural affairs show.

To read the rest of the story, go to the CBC site here or at this url: http://www.cbc.ca/arts/tv/story/2010/08/27/down-syndrome-girl-emmy.html

You can also listen to the relevant segment of the episode of Q referenced above right here or at

http://www.cbc.ca/q/blog/2010/08/27/should-the-song-down-syndrome-girl-from-family-guy-win-an-emmy/

You can watch the video for Down Syndrome Girl immediately below

Next is a video that displays the lyrics fairly clearly: Continue reading

Tracking Chromosomes, Castrating Dwarves

This is the title of a new paper by distinguished historian of eugenics, Paul Lombardo, available for download via SSRN here that recently appeared in the journal Ethics and Medicine. The paper focuses on Charles Davenport, who became the Director of the Cold Spring Harbor Laboratory in 1910 and immediate set up the Eugenics Records Office there later that year. It was to become a major institutional force in the development of North American eugenics. While the paper concerns a small episode in the history of eugenics from 1929, what it says about consent, medical intervention, and disability will ring bells for regular readers of this blog. The abstract of the paper reads: Continue reading

Kristina Chew on Eugenics, Fear and Pain

Kristina Chew on autism at change.org, writing in response to her son Charlie’s new neurologist’s request for genetic testing, in a post that begins:

The new neurologist has requested that my son have some genetic testing done, specifically for the PTEN and MECP2 genes, both of which have been connected to autism (and the latter to Rett Syndrome). Which means, there’s been some evidence linking these genes to individuals on the spectrum, but nothing definitive.

Here’s my comment: I’m sure that your neurologist will have an interesting response to the question: what’s the point FOR CHARLIE of genetic testing? Continue reading

The Modern Pursuit of Human Perfection: The Full Story

Below are all 13 posts from our Modern Pursuit series of posts, deriving from the public dialogue that we cosponsored with the AACL and the CACL at the University of Alberta in October 2008. 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, and was rounded out by a series of interchanges between audience and panel. All videos now contain transcripts (thanks to Jackie Ostrem for completing the work needed here: update 21 June, 2009: all now are closed captioned, thanks again Jackie!), and the videos are also available on YouTube. 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.

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, and John Simpson for organizational assistance.

Introduction

My doctor, my child

Living with trisomy 13, part I

Living with trisomy 13, part II

When disability meets social welfare

Bioethical reflections on disability, medicine, and family life

Decisions and dishonesty in medicine

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

Inclusion to Autonomy – World Down Syndrome Day 2009 to come March 21

The Brasilian program
World Down Syndrome Day (WDSD) was proposed by Down Syndrome International
as March 21 because the date is written 21/ or 3/21, in allusion of 21st
chromosome trisomy that provokes Down syndrome.

The first celebration was held in 2006 and this year it coincides with the
50th anniversary of Discovery of the trisomy by Dr Jerome Lejeune.

INCLUSION TO AUTONOMY is the summing up of what we work for, expect and owe
to our sons, daughter and relatives with Down syndrome. One year after
Brazil ratified the UN Convention on the Rights of Persons with Disability,
we reassure the right to full social inclusion to all people. Inclusion
that is guaranteed by law in Brazil and should be respected and fulfilled by
governments and by all sectors of society. Continue reading

Going Underground and True Choice

[This is the twelfth post in a series highlighting a public dialogue held at the University of Alberta on October 23rd, 2008, titled The Modern Pursuit of Human Perfection: Defining Who is Worthy of Life. The dialogue was sponsored by the What Sorts Network, in conjunction with the Canadian Association for Community Living and the Alberta Association for Community Living. For further context, please see the introductory post in the series, which can be found here; we’ll string together all posts in this series when we have most / all of them up, or you can search by the category “Modern Pursuit” to get those already posted.]

Here Anna Macquarrie from the CACL talks more openly about the history of eugenics and contemporary genetic testing. In Part 2, below the fold, there is some discussion of this, with Simo Vehmas resisting the linkage of eugenics with contemporary attitudes and practices, and some hearty discussion following from all–not everything can be heard here, but we’ve put what we could make out on the transcripts beneath the fold.

Is making the connection between past eugenic practices and contemporary practices, such as genetic testing for Down Syndrome, “playing the Nazi card”, as Simo suggests?

Going Underground and True Choice: Part 1

Note that there is no sound in the first 30-40 seconds of Part 1, which simply contains the title of the clip, the name of the speaker(s), and the location of the symposium, information that is provided in the beginning of this post. Continue reading