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

Living with Trisomy 13, Part 2: The Monitor

[This is the fourth 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. It is also the second part of a description of events given by Sam Sansalone. The first part can be found here. 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. This series will bring forward the videos made of this event twice a week, roughly every Wednesday and Saturday. 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.]

In this video (followed by a transcript) Sam Sansalone continues to describe his experiences trying to keep his daughter, Katya, alive. This part of the story is focused around a monitor necessary to keep Katya alive. The hospital staff clearly recognize that this piece of equipment is needed but seem somewhat reluctant to allow Katya to use the monitor, possibly even arranging a situation where a less medically savvy couple than Sam and his wife would choose to give up the monitor without realizing the consequences (ie. their child quietly choking to death while they slept). Fortunately, the missing monitor is caught and Katya is able to continue living.

As far as we know Katya is the oldest surviving child in Canada to have received a Trisomy 13 diagnosis and Sam closes by sharing his thoughts about why this may be the case.

Watch the video and answer the accompanying poll: Continue reading

Peter Singer on Parental Choice, Disability, and Ashley X

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.

I want to raise three points about what Singer says here. Continue reading