[This is the third 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. 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 the following video clip (with transcript) Sam Sansalone begins to share his experiences fighting to save his daughter, Katya, who was born with Full Trisomy 13 (a condition where the child has an extra chromosome 13, for more information see www.livingwithtrisomy13.org). I think you will find this story interesting for two points that Sam shares. First, there is the issue of medical personnel intentionally withholding information about the quality of life that children with Trisomy 13 can expect; an act of deliberately propagating a stereotype. The exact reason for sharing this behaviour is unclear but it is likely at best a form of misplaced paternalism and at worst a set-up for point two.
Point two is Sam’s experience with the illusion of choice that can so often exist in our society, whether inside the medical community or not. In such situations people are initially presented with the opportunity to make their own choice about a difficult decision (and typically information to sway them to a particular side, the tie-in to point one). If the choice falls inline with what is expected then all is well, there may be a few tears and some whispered “I know it’s hard, but you’ve done the right thing”s, but life goes on. BUT if the choice falls outside of what is expected, then you are clearly not in your right mind, your response is rejected, and authority for the decision is assumed by whomever gave you the illusion of choice in the first place.
When the bioethics community steps in Continue reading