Source: Chicago Sun Times; July 21, 2002

Sometimes, in spite of my own perfectionist's resistance, I can't help but feel moments of great satisfaction about the positive changes brought about by the disability rights movement. And then along comes a newspaper story about a so-called mercy killing.

 The murderer is almost always a distraught care-giving relative who couldn't take it any more. The killer's communities and defense attorneys rally around them by describing those they killed with the most deeply dehumanizing terms in the lexicon of victim-blaming. They were sufferers, they were helpless, they were hopeless, they were burdens.

Most depressing and outrageous is when the press goes along for the ride by giving this viewpoint the first bit of credence. The latest example is the story of Carol Carr, 63, who was charged with two counts of murder last month for shooting to death her two sons, Andy Byron Scott, 41, and Michael Randy Scott, 42. Both men had Huntington's disease and were living in an Atlanta-area nursing home.

The Chicago Tribune published a commentary in defense of Carr's alleged actions. Lewis Whittington wrote of the "nightmarish" existence of living with a "degenerative" disease. And what a parallel living hell it is, he said, to have to be the one who lives with them, who has to bathe them and move their limbs and dispose of their bodily waste.

When he talks about people with degenerative diseases, he's talking about me. I have muscular dystrophy. I need someone every day to help me bathe and move my limbs and dispose of my bodily waste. And when he talks about family members who can't give them the help they need, he's talking about me too. My mother loves me dearly as I love her. She would do anything for me. But she's in her seventies and she just can't do everything I need.

So do I deserve a bullet in the brain?

The hell Whittington described is a hell of our own creation. I live in my own condo and a state program pays for people to assist me at home under my direction. My situation is light years away from hopeless. Hope comes in many forms. For me it comes in the form of those who come assist me. Everyone deserves these options that bring hope, whether it's pain management or technology that facilitates communication or whatever.

But it makes me wonder how we ever reached the level of enlightenment necessary to create such programs when we are still capable of treating people like the Scott brothers with such profound contempt. When they need help, we shrug and say it's a family responsibility. When it's too much for the family, we offer no alternatives but surrender to a nursing home or death. No wonder they perceive themselves as hopeless.

And then we mock their memories by dismissing their deaths with the disdainful oxy-moron of mercy killing. We say killing a human being is murder but killing them is something less.

How demoralizing it is to be reminded just how unwelcome people with disabilities still are in our culture. We should use the death of the Scott brothers to dedicate ourselves to creating the kind of supportive society where no one is ever made to feel like a burden.