The Progressive Disability Perspective

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 dialogue in the disability community this week, though, and that painfully open dialogue 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 in the disability rights movement and hopefully explains why many of us don't think non-disabled people know enough about our lives to determine whether we should live or die. It was non-disabled 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 non-disabled 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 anti-choice camp. The problem is our perspective looks very similar to the anti-choice stand. The main difference is anti-choicers say "life at all costs" and 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 disability rights activist group Not Dead Yet's (NDY) 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'm not sure this is accurate – that progressive groups are so locked into the debate as defined by the anti-choicers 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 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 anti-choicers 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 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 anti-choice 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 anti-choice groups, and that we share a common perspective, which we do not. I'm sure you see the dilemma.