Editor's Column
by
Tim Benjamin
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. ![]()
