It's been a hard week for disability rights activists like me who have strong feelings about Terri Schiavo's situation. Personally I am shocked that the revulsion I feel about how lightly the president and the U.S. Congress hold our Constitution isn't universally shared by my fellow disability rights activists, most of whom, like me, are card-carrying members of various progressive organizations. Some of my colleagues want to "save Terri at all costs," but I don't think anyone's life is worth even a ding on the U.S. Constitution.
There has been a lot of dialog in the disability community this week, though, and
that painfully open dialog has helped me frame how I understand what I think
needs to happen next regarding situations like Terri Schiavo's.
I have personally known people who were thought to "not be there" who
suddenly dropped in. The first time was back in 1990 when I worked at the
center for independent living in Pittsburgh. We had a contract to get
severely disabled people out of institutions and there was this one guy
they'd park across from my desk ... talk about vacant stares. I always
said, "Hi, Henry," when I saw him and one day he said "hi" back. I jumped
and spilled my coffee. That was the first time I saw how wrong we can be
about whether severely cognitively disabled people are "there" or not.
My experience with Henry is practically a rite-of-passage experience in the
disability rights movement and hopefully explains why many of us don't think
nondisabled people know enough about our lives to determine whether we
should live or die. It was nondisabled medical professionals who told our
agency not to waste time with Henry, as he wouldn't know anyway. Our agency
was owned and operated by disabled people at the time--all the top
management positions were held by people with such significant disabilities
as spina bifida and blindness--so they knew to set aside what the
nondisabled medical professionals thought about such people as Henry.
Hopefully this anecdote shows how our movement's perspective developed
around the issues raised by the Schiavo case. It is a unique perspective,
and one that I think is more in line with the progressive camp than the
prolife camp. The problem is our perspective looks very similar to the
prolife stand. The main difference is prolifers say "life at all costs" and
we say, "don't assume our lives aren't worth living." Please note the
I'd say the majority of us in the disability community who support Not Dead
Yet's positions are prochoice. Many of us are gay or lesbian, including some
in NDY leadership roles. Many are atheist or agnostic. Who we are
collectively ought to be enough to differentiate NDY from the prolife camp.
But it seems -- seems, I'm not sure this is accurate -- that progressive
groups are so locked into the debate as defined by the prolifers that
they're not willing or are unable to give weight to our perspective on these
issues in their internal policies. Even though these issues primarily affect
our community more-so than any other group of people.
Personally I don't think we try hard enough to articulate our perspective to
progressive leaders. I think this is because it puts us in the uncomfortable
position of defending our lives. But then along come these prolifers who
learn our lingo and dance our dance steps and it gets even more confused.
I was invited to speak at a "Save Terri" rally in Central Pa., along with
Pennsylvania's pro-life leader and my choices were a) speak and get the NDY
perspective in or b) NOT speak and NOT get the NDY perspective in. So I
went. The leader of national NDY was even more concerned than I was about me
speaking at the same venue as a prominent prolife leader, but we worked on
my remarks and thought we found a good balance. But I still worry that
anyone who caught the coverage went away thinking NDY is allied with prolife
groups, and that we share a common perspective, which we do not. I'm sure
you see the dilemma.
So what do I think about Terri Schiavo's situation? I think the Schindlers'
pain led them to become prolife patsies and their prolife advisors ought to
be ashamed of themselves for how they've used that family's anguish to push
their political agenda. I think Mike Schiavo's probably a stand-up guy, very
much like the working class men in my own family. I've not seen anything
credible to suggest he's the wife abuser some propagandists make him out to
be and I've seen no credible proof that he wants Terri dead "for the money."
I wish Michael had divorced Terri and let Terri's parents take over. That
didn't happen and in the end, despite the typically reckless actions of this
president, the law was followed. But the law was followed using tainted
data; the common assumption that people as seriously, severely and
completely disabled as Terri would certainly not want to live.
I ask my fellow progressives to tweeze the disability perspective out of the
culture war rhetoric of either "life at all costs" or "better dead than
disabled." Don't let the rightwing continue to frame this issue and instead
help us articulate the nuances of our perspective in the public debate.
Specifically, there will be agitation for changes and overhauls to the
guardianship laws in our nation and in our states. I ask any of you who
follow this kind of thing to set aside all framework of prolife/prochoice
and instead help us stamp these laws with the progressive value of
self-determination. Help ensure these laws reflect the disability
community's perspective. Otherwise I shudder to think what may happen.
Josie Byzek can be reached at email@example.com