Here We Go Again
14 months ago I found myself in the middle of an ethical firestorm that really shouldn't have been. It culminated in mine and Ben's live appearance on CNN's Paul Zahn Now defending the parents of a child with severe disabilities. If you weren't a regular to our blog then or weren't aware of The Ashley Treatment this article from today's CNN website can fill in a few of the details. You can read most of what happened here, here, here, here, here, and here.
In a nutshell "The Pillow Angel" story divided the disability rights community right down the middle. For the most part parents and caregivers of severely disabled loved ones were very supportive of Ashely's parents. Our argument was and still is that unless you have walked in our shoes then you have no right to deem the procedure as medically unethical. Further more no other entity is better qualified than the child's parents to make such a choice and that includes the courts, the medical community, or so-called disability rights ethicists.
As today's story mentioned several things have happened over the past year including the hospital admitting it broke a Washington state law by not including the court system and the unfortunate suicide of one of the doctors that helped with the procedure. Both of these events are probably viewed as a step backwards for those of us who are the primary caregivers of our special loved ones. I sincerely hope not. The good news is that according to one expert in the article there is "no consensus among doctors on whether treatment is appropriate (or) ethical."
And the most important thing is that Ashley is still as healthy as she will ever be and according to her parents, "The 'Ashley treatment' has been successful in every expected way. It has potential to help many others like it helped our precious daughter." While opponents continue to use terms like "mutilation", "inhumane", and "perverse" I will wholeheartedly admit to one of their accusations. Yes, we parents of exceptional children do play God. In fact we do it everyday - perhaps even on a hourly basis. Otherwise our children would've died a long time ago.
Wednesday, March 12, 2008
Here We Go Again