Bioethical reflections on disability, medicine, and family life

[This is the sixth 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, or you can search by the category “Modern Pursuit” to get those already posted.]

In the clip that follows, we make the transition from the personal stories of Wendy, Sam, and Colleen that have featured in previous posts in the series, to the reflections of Simo Vehmas that marked the beginning of a segue to discussion of those stories. Simo is a leading philosopher of disability from Finland who was able to join us for a few days, and here he offers some bioethical reflections on disability, medicine, and family life in light of those stories. Respect for parental choice is an important guiding principle for bioethicists, though each of the stories from Wendy, Sam, and Colleen question how well medical practice follows that principle. But there is another aspect to parental choice–the choice not a parent a child with a disability–that comes up in Simo’s comments–that raises other questions, as we’ve seen in several posts in the Thinking in Action series, such as this one on Singer on parental choice and Ashley X, and this one on Adrienne Asch vs Jeff McMahan on the “ethics of exclusion”.

In the next post, which will introduce Dick Sobsey‘s reflections, we’ll see this issue taken up again, and in the discussion posts to follow thereafter in the series, it becomes more hotly debated. But if you want to jump start further debate right now, feel free. Video and transcript beneath the fold. Continue reading

The son that Trent can never be, and what to do

Recently a friend of mine, Samantha, wrote to me expressing the following feelings of ambivalence. Samantha had just returned from a trip accompanying her sister to China to help meet and greet a new member of her sister’s family, a beautiful 4-month old baby boy, whom her sister and her husband had just adopted. A few years ago, Samantha’s own 11-year-old son had suffered a brain injury that had him hospitalized for over 6 months, from which he continues to recover, slowly but steadily, though it has become obvious that there are limitations to how complete that recovery will be. Walking and talking, likely finishing school, yes, but many visible cognitive and personality, changes that most would view, and that Samantha views, as definitely for the worse. There’s much that I could write on this, but far better to leave it entirely in Samantha’s own words (with her permission), including the question she has. Samantha writes: Continue reading