By Stephen Drake Stephen
Drake is the research analyst of Not Dead Yet, a national disability rights
group.
October 29, 2003
Bob and Mary Schindler consistently refer
to their daughter, Terri, as a disabled person. They're right.
Although
most newspapers are covering this story as an "end of life" or "right to life"
issue, what ultimately happens to Terri Schiavo will affect countless other
people with disabilities in this country.
Like many disabled people,
Terri Schiavo is unable to tell us what future she prefers. She left nothing
saying she preferred starvation to living with a disability. She never signed a
legal document designating her husband as her surrogate in the event she became
unable to communicate.
Despite this, media commentary is dominated by
bioethicists and "end of life" experts telling us she should be left to die and
explaining how "peaceful" starvation is as a way to die. To hear them tell it,
Schiavo has no meaningful life. She can't talk, they say, she can't eat on her
own, can't walk and has no control over her bowels or bladder.
Thousands
of people with disabilities across the United States are watching the case
anxiously. In fact, 12 national disability groups have filed "friend of the
court" briefs in opposition to the efforts to starve Schiavo. Obviously, we want
to know how all those commenting in this case feel about the lives of people
with Down's syndrome, autism, Alzheimer's and other disabilities. Are they next
for death through starvation? It's not so farfetched.
I was born
brain-damaged as a result of a forceps delivery. The doctor told my parents I
would be a "vegetable" for the rest of my life — the same word now being used
for Schiavo — and that the best thing would be for nature to take its course.
They refused. Although I had a lot of health problems, surgeries and pain as a
child, I went on to lead a happy life.
Up until the mid-1980s, U.S.
pediatrics journals routinely published reports on the selection criteria used
to determine which disabled infants born in hospitals would be left to die.
One of the most notorious incidents involved a team at Oklahoma
Children's Hospital in the late 1970s that used a "quality of life" formula for
children born with spina bifida that factored in the parents' economic and
educational level. Poor and uneducated parents and those on public assistance
were more frequently advised to not treat their children. Twenty-four babies
with spina bifida died, mostly from untreated infections. Not one person on the
medical team was charged with a crime.
About 20 years ago, a hospital
staff in Indiana was starving an infant with Down's syndrome. A whistle-blower
alerted authorities, and the district attorney went to court to order hydration.
The judge refused. Public comment supported the idea that "difficult" decisions
like starving disabled infants were best left to the privacy of doctor-parent
consultation.
In spite of that, enough of the public was sufficiently
outraged to create a stir that cut across the political spectrum in Washington.
As a result, congressional legislation was drafted to prevent medical killings
of disabled infants.
The legislation, which ultimately was passed, was
decried by bioethicists, physicians and others as an attack on both the medical
profession and the privacy of family decisions. As a result of the passage of
the law, though, more of us avoided getting killed in hospital nurseries through
denial of treatment.
Guardianship — which in this case was granted to
Schiavo's husband by the courts — has to have limits, especially when the stakes
are the very lives of the people under guardians' power. It's important to
remember that guardians have power over people, not property, and those people
still have rights.
Click
here for article licensing and reprint options