Editor's Column - April 2005

It’s been a month of questions about disability and death. Pope John Paul II’s disability and death was a contrast to Terri Schiavo’s just a few days earlier. He accepted his disabilities and dying in keeping with words he wrote: “Medicine must always be at the service of life.” In a 2004 speech, he went on to say, “When treatment cannot overcome a serious disease, then efforts should be directed to the alleviation of suffering. In every case it is important to remember the inalienable dignity of every human being, even in the extreme conditions of terminal illness. Euthanasia can be motivated by sentiments of compassion, or by a false idea of preserving dignity. But instead of relieving suffering it just eliminates the person.” That is a lesson Hollywood needs to learn.

Terri Schiavo’s death scared people, and what scared them most was that feeding tube. If you’re on a tube, they kept saying—just like Hollywood’s movies lately—you can’t really be alive. They don’t have the slightest idea how tubes are our friends. Whether they’re implanted under our skin, or inserted into our bodies, made of metal and working as canes or crutches, we depend on tubes. Tubes mean we can get on with life.

The circumstances of Terri Schiavo’s death gave us all a chance to re-evaluate the need for a living will or advanced medical directive. Under what circumstances do we want our lives to end? It’s a difficult thing to think about, let alone sit down and write about, but we need to inform others of our wishes. We could never predict all the possible scenarios. But just thinking about the questions makes for the best reason to take the time to fill out a health care directive.

Read what Kathy Hagen has to say about advanced medical directives—and thanks, Kathy, for your help on this important topic. The Access Press website at www.testing.accesspress.org will have a downloadable version of a basic advanced medical directive. If you’re having trouble filling it out, look at the Minnesota Board on Aging’s web site for some directions: www.mnaging.org/seniors/assistance/directive.html

Metro Mobility took a huge budget cut. We have printed some action items on page 1. Do not let this one slide just because you don’t use Metro Mobility. I’ve been told that many of the legislators are very apprehensive about this cut; your call or letter could make the difference.

Lance Hegland reports on page 12 about the 25th Annual National Veterans Wheelchair Games that are coming to Minneapolis for the first time ever. The organizers boast that it’s the largest annual wheelchair sports event in the world. More than five hundred athletes will be participating in events from table tennis to electric wheelchair races. What we need to do is get involved. The promoters are figuring they will need about 2,500 volunteers. See Lance’s article to see how you can take part.

Jack Priester explores the Care vs. Empowerment controversy and outlines the size of the problem. Professor Priester explains some strategies to narrow the gap between health-care professionals and health care philosophy and the disability community and the entire non-health care trained population.

I would like to thank all of you who sent prayers, good wishes, and positive energy my way while I was sick. It has all helped in my continuing recovery. I also really want to thank Terri Ricci and her dedication to the paper. She worked hard, along with a lot of great contributors, to put out the last two issues of Access Press, and I’m proud and happy to be back among so many good colleagues. I’m still hooked up to tubes, but I’m back.