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 →
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.
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 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 →
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.
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 →
[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 →
[This post is the sixth in our new series of Thinking in Action posts, the series being devoted initially at least to discussion of talks at the Cognitive Disability conference in NYC in September.]
In a two previous post I argued against Peter Singer’s position that humans with profound intellectual disabilities should be considered nonpersons without moral status or fundamental rights. In this post, however, I want to support his concern for about the treatment of nonhuman animals and endorse his view that some fundamental rights should be recognized for nonhuman animals. In supporting his view that nonhuman animals deserve greater respect and better treatment, however, I do want to suggest that the arguments that he presents against respecting the moral status of humans hurts rather than helps progress in improving the status and treatment of nonhuman animals. Here are five reasons why. Continue reading →
This post kicks off a series of posts at What Sorts that we hope will appear every Tuesday and Friday over the next few months called Thinking in Action. In the first instance, this series will offer commentaries on talks and discussions at the recent conference Cognitive Disability: A Challenge to Moral Philosophy. The aims of these Thinking in Action posts will be to generate and advance discussion of specific issues that arise in taking up the themes of the conference. The posts will typically feature a relatively short clip from a talk or discussion at the conference, followed by a commentary; transcripts of all excerpted video clips will appear at the end of each post. In light of our experience with this first (extended) round of posts, we’ll see whether we continue the series with clusters of posts with other thematic focuses. We will both tag and categorize each post with the series label “Thinking in Action” so that you can review them together, if you like, and we encourage the use of posts in the series in classrooms, in local discussion groups, and in organizations at the interface of government, university, and community. We will aim to make each of these self-contained, with the conference podcasts themselves serving as a larger reservoir of perspectives on cognitive disability on which you can draw. We hope that you will join in the discussions, both on the blog and beyond it.
To help us get some idea of what readers know about the conference podcasts we’ll be discussing, here’s a quick poll that we encourage you to take before proceeding.
As one might expect, Peter Singer’s talk at the conference Cognitive Disability: A Challenge to Moral Philosophy, presents ideas that Singer is well-known for. Amongst these are views that draw parallels between animals, on the one hand, and individuals with disabilities, on the other, especially those with “profound mental retardation”, a medical category that includes, amongst other features, having an IQ of 25 or below. I want to kick off this series of blog posts not with a discussion of that general comparison—though Dick Sobsey might well take that up in the next few posts—but by concentrating on something in Singer’s talk focused on the issue of parental rights and disability. Here is Singer, toward the end of his talk, presenting the perspectives of parents. Singer points out that, as a group, parents of children with disabilities divide over their views of their own children. Although it is a little unclear, even from the fuller context, precisely what “this issue” is that parents divide over, it concerns pain, death, and quality of life:
[This clip is from Singer’s talk at the Cognitive Disability conference, podcast #15: 33.30 – 38.02] If you are having trouble playing the video above, the full transcript is provided at the end of the post, and you can also try Youtube directly by clicking right here.
CHESTERFIELD, Mo.— When Missouri Sen. John Loudon and his wife, Gina, decided to adopt their third child, they knew three things: They wanted a little boy, they would name him Samuel and he would have Down syndrome.
“This was always part of the plan,” said Gina Loudon as their now 3-year-old Sammy darted in and out of the living room in his slippers, giggling loudly.”We didn’t know much about how it was going to happen, but we just knew.”
The politically active couple with deep roots in the anti-abortion movement said their passion for Sammy spurred them to take legislative action on behalf of children with Down syndrome. It also put them in the center of an ongoing national discussion about genetic testing, the acceptance of people with disabilities and the type of information about Down syndrome that new or expecting parents were getting from their doctors.
Various studies estimate that 80 to 90 percent of parents who receive a prenatal diagnosis of Down syndrome through genetic testing choose to abort the fetus. Researchers believe this is the cause behind an 8 percent decline in people with Down syndrome in the United States in the past two decades. Continue reading →