SQUARING EUGENICS AND THE FOUNDING:

The Terri Schiavo Debacle from a Progressive Disability Perspective (Josie Byzek, 3/28/05, Common Dreams)

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.

But, as she says, the lives of her and people like her aren't worth "dinging" the Constitution....

Posted by Orrin Judd at March 28, 2005 4:07 PM