There has been a lot of dialogue in the disability community this week, though. That painfully open dialogue has helped me frame how I understand what I think needs to happen next.

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. I hope it 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 significant disabilities like spina bifida and blindness -- so they knew to set aside what the nondisabled medical professionals thought about people like Henry.

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 pro-life camp. The problem is that our perspective looks very similar to the pro-life stand.

The main difference? Pro-lifers say, "life at all cost." We say, "don't assume our lives aren't worth living." Please note the difference.

I'd say the majority of us in the disability community who support Not Dead Yet's positions are pro-choice. 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 pro-life camp. But it seems -- seems, I say: I'm not sure this is accurate -- that progressive groups are so locked into the debate as defined by the pro-lifers that they're not willing, or are unable, to give weight to our perspective on these issues. Even though these issues primarily affect our community more 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 pro-lifers 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 Pennsylvania, along with Pennsylvania's pro-life leader. 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 pro-life 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 pro-life 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 pro-life patsies and their pro-life 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. Instead, help us articulate the nuances of our perspective in the public debate.

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 the pro-life/pro-choice framework we're all used to, 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.

Posted March. 25, 2005.

Josie Byzek is a member of the National Organization for Women's disability rights committee, and sits on the advisory board of the Pennsylvania Alliance for Democracy.

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