Wednesday, March 12, 2008

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.


carmilevy said...

Beautifully put. Every word resonated deeply with me, but this phrase stands out just a bit more:

"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."

I used to coach the Special Olympics swim team in my community pool. In all my years as a lifeguard, it was the most rewarding and memorable growth experience. Yet I also remember the glancing comments of other parents, other staff, other patrons, all of whom always seemed content to elect themselves experts in what was best for these individuals.

Yet when I asked what qualified them to make defining statements such as "They should do X..." or "I would never do THAT to my kid..." all I got was a shrug. They read it somewhere. Someone told them. No one had any direct experience or responsibility for a severely disabled child.

My parents always taught me to never judge others, especially if we never had the benefit of first-hand experience. Empathy is a powerful teaching tool. Sadly, too many among us haven't learned its value.

Thank you for speaking - online and on the broadcast - so eloquently for those who cannot.

Creative-Type Dad said...

Very powerful. It bewilders me that courts and lawmakers think they're doing a service by intruding on parents and caregivers.

I hope one day they realize the pain and damage they do to families.

Anonymous said...

Thank you thank you thank you for putting into words what I am too angry to say. It is a relief to know that I'm not alone in my thinking on this. My son is severely disabled, and all I want is for him to be happy. People who have no idea what they're talking about should stop judging these parents.