Good people in medicine and the disconnect

[This is the tenth 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.]

Here Michael Shaw draws on his dual experience as a child in a medical family and as a parent of a child with Down Syndrome, and as a parent advocate working with the Canadian Down Syndrome Society to ask a question about how doctors and others often fail to connect with the concerns of parents of children with disabilities. The video is in two parts; Part 2 beneath the fold, with transcripts for both videos there (thanks to Jackie Ostrem!). A response from Dick in Part 1, and responses from Sam and Wendy in Part 2. If you have trouble listening to or viewing the videos here, you can also listen to or view them directly at Youtube: Part 1 and Part 2.

Continue reading

My doctor, my child: The response of the medical community to a mother who chooses to have a child who might be born with a disability

[This is the second post in a series highlighting a public dialogue heald 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.]

The story you are about to hear you may find surprising in a number of ways; I know that I certainly did when I heard it on the night it was recorded. The contrast between the adversity faced by Wendy MacDonald and her family from the medical community upon making the decision to keep her baby early in the pregnancy and the support they received once it was finally time for Kyle to be delivered struck me as a very unfortunate demonstration of the power of linguistic framing. The shift in language from “miscarriage” to “premature birth” is a small one (the addition of one word, one syllable, and three letters), but it made all the difference for this family and the ability of the medical personnel involved to support them. I also found the adamant stance of her family doctor a bit perplexing, the sort of chilling paternalism that so often arises out of a misplaced belief that we alone have access to the knowledge of what is best for others. Perhaps even more than this I was surprised that this story had, and continues to have, a happy ending. For every Wendy MacDonald I am sure that there are many, many women who would be mothers and men who would be fathers that are bullied into conforming with the system because the system “knows best.”

Perhaps this video will make you a little angry, but it should also give you a little hope. Enjoy. Transcript of the clip beneath the fold. Continue reading

CNN article: Children forced into cell-like school seclusion rooms

By Ashley Fantz
CNN

MURRAYVILLE, Georgia (CNN) — A few weeks before 13-year-old Jonathan King killed himself, he told his parents that his teachers had put him in “time-out.”

The room where Jonathan King hanged himself is shown after his death. It is no longer used, a school official said.

[Two photos taken after Jonathan King’s death show the interior and exterior of the steel door to the cell where he hanged himself . In the photo on the right, which shows the inside of the cell, we can see the cord Jonathan used to hang himself tied to the metal cage-like window of the door. A school official has said that the room is no longer used.]

“We thought that meant go sit in the corner and be quiet for a few minutes,” Tina King said, tears washing her face as she remembered the child she called “our baby … a good kid.”

But time-out in the boy’s north Georgia special education school was spent in something akin to a prison cell — a concrete room latched from the outside, its tiny window obscured by a piece of paper. Called a seclusion room, it’s where in November 2004, Jonathan hanged himself with a cord a teacher gave him to hold up his pants. An attorney representing the school has denied any wrongdoing.

Seclusion rooms, sometimes called time-out rooms, are used across the nation, generally for special needs children. Critics say that along with the death of Jonathan, many mentally disabled and autistic children have been injured or traumatized. Few states have laws on using seclusion rooms, though 24 states have written guidelines, according to a 2007 study conducted by a Clemson University researcher.

Read the entire CNN article here: http://www.cnn.com/2008/US/12/17/seclusion.rooms/index.html

Thanks to Doug Baynton for alerting members of the Disability Studies in the Humanities listserv to this article.

Dani, a feral child

The idea of a child who has grown largely without human contact or care is of interest to academics for a variety of reasons, whether the interest stems from questions about child development, or the nature/nurture problem. But I agree with jj in this post from Feminist Philosophers that the reality of “the feral child” is far from being the distant object of theoretical curiosity that it is often speculated as in classroom discussion.

Dani with her new family

Dani with her new family

This journalistic report on the story on Dani, a child who went largely without human contact until she was seven, does a remarkably good job of treating her as a person, rather than an object of medical intrigue. Dani was diagnosed with a kind of environmental autism due to this neglect. Included is an audio version of the story and a slide show, as well as links to other stories on Dani and a place for feedback.