The Ashley Treatment—and the nationwide ethical controversy it has caused—has me confused. Ashley is a 9-year-old child from Seattle who has been given various medical treatments to keep her from maturing. The disability community is divided over the issue. I hope we will get more of your opinions to consider on this controversial procedure.
I have a difficult time understanding how this procedure, in keeping Ashley from developing into a full-grown, adult female, will give her a better quality of life or a more dignified life. For me it’s clearly wrong to do this procedure if it is primarily for easing the difficulties of giving care.
Fifty years ago, it was easier to place a person with a disability in an institution than to care for them at home. A 1000 years ago, medical procedures were thought to be insults to a higher power—if the higher power wanted us to live, we would not have become sick. For Ashley’s sake, I hope we will not some day look back and regard “Ashley’s Treatment” to be as backward as these approaches. I am afraid, however, that we will.
In most disability issues there is no one-size-fits-all answer. There is no absolute right or wrong with regards to most disability-related medical treatments. There is no one choice that every individual would make. There are certainly few choices that we want society to make for us. But no matter where we stand on medical ethics, most of us agree there is one true imperative: every person, no matter what their IQ or physical abilities, is a human being with the right to respect and dignity, just as they are.
I am having a difficult time taking a position in this case; there are too many questions involved. Is the important issue that we should not do this kind of invasive procedure, even for the presumed improvement of quality of life? Or is the question whether we should inhibit the growth of any person? Is the question whether life is more dignified when the body size matches the mental capacity of the brain? Is the main question where this slippery-slope will take us? Or is it what do dignity and respect really mean? I think the debate needs a clearer laying out of the questions.
One thing is for sure, this whole issue screams for the need for better personal care for vulnerable individuals and their loving families.
Perhaps the new United Nations Convention on the Rights of Persons with Disabilities can shed some light on the Ashley debate. One of the general principles of the Convention is “respect for the evolving capacities of children with disabilities and respect for the right of children with disabilities to preserve their identities.” The convention also calls for “recognizing the need to promote and protect the human rights of all persons with disabilities, including those who require more intensive support,” and for “recognizing that women and girls with disabilities are often at greater risk, both within and outside the home of violence, injury or abuse, neglect or negligent treatment, maltreatment or exploitation.”
As the Convention notes, “Disability is an evolving concept and results from the interaction between a person’s impairment and obstacles such as physical barriers and prevailing attitudes that prevent their participation in society. The more obstacles there are the more disabled a person becomes.” If the United States ratifies the convention, the Supreme Court of the United States may have a better description of disability when determining American with Disability Act cases.
The present Convention will be open for signature by all States at the United Nations Headquarters in New York beginning March 30, 2007. Hopefully the United States will sign and ratify the convention right away. It’s pretty clear that the Convention sets standards that can protect the rights of people with disabilities here and around the world—including Ashley.