Ashley, Ethics, and Quality of Life

Several weeks ago, in my graduate severe disabilities methods class, a group of students facilitated a roundtable discussion that forced the rest of us in class to examine our personal sensibilities about what lies at the intersection of human rights, human disability, ethics, and medical technology.

The topic of the roundtable discussion was the story of Ashley, or, as her parents have called her in their own blog (here), their “pillow angel.”

Ashley, a nine year-old girl with severe brain damage, has recently undergone medical therapies and procedures designed to close her growth plates in order to effectively stall her growth and keep her physically small. Time Magazine reported, in their January 7, 2007 web story (here), that Ashley will become no taller than about 4 ft. 5 in. She has also had her uterus and breast buds removed, ostensibly to (a) prevent discomfort from painful menstrual cramps, (b) prevent breast cancer and fibrocystic disease (there is a family history of each), and (c) eliminate the potential for pregnancy as a result of rape.

We spent a little bit of time listening to our discussion leaders talk about what Ashley’s doctors and parents have done, but not as much as time as we spent reacting to it.

As you might expect, there were perspectives from all sides of the issues and the discussion was quite spirited. On the one hand, some said Ashley’s parents had the right to do what they believed to be the right thing for their daughter. “Caring for an adult sized woman with severe disabilities cannot be easy,” said some of my students. In the end, wouldn’t it be better if caregivers didn’t have to struggle with an adult-sized Ashley in order to help with personal care needs such as showering or using the toilet? Wouldn’t it be better for Ashley and her caregivers if none of them (they or Ashley) had to face 30 years or so of feminine hygiene needs?

Others took exception to what has happened from a human rights perspective. Doesn’t this story suggest just one more instance in which the life of a person with disabilities has been devalued? Won’t the decisions made for Ashley adversely affect her quality of life? Where will it end, these students wondered? Isn’t this just another step onto a slippery slope that we should all stay away from?

In my mind, the story illustrates a fragile, perhaps disquieting intersection between ethics and human rights of people with disabilities on the one hand and possessing and using technology on the other. Are we pushing the envelope properly when--after realizing we have at our disposal the ability and the opportunity to use a technology toward some end--we so abruptly or frequently pause and wonder among ourselves if, by using that technology, we are really doing the right thing?

What do you think?

Until next time…