This month we’re following our commentary in the December issue on physician-assisted suicide with another one, also by a knowledgeable, persuasive critical thinker and renowned disability advocate. This topic has been controversial in the disability community, and among the general public, for a long time. In my lifetime, I’ve followed the Karen Ann Quinlan case in 1975, then Dr. Jack Kevorkian in the early 1990s, and then the state of Oregon’s passage of a physician-assisted suicide act in 1997. The topic of euthanasia has been around much longer, probably, for as long as human life.
We are divided in this society about the issue of suicide. Until the 1980s, nearly half of the states had laws against committing suicide. We spend a great deal of resources on preventing suicide. You see it in billboards urging people who are depressed or suicidal to seek help. It seems to me that often those depicted as the targets of prevention efforts are healthy young people. At the same time, states are reviewing legislation or passing initiatives to allow assisted suicide, and the stories seem to center on the aged or individuals with disabilities or disabling conditions. Often there seems to be an implied message that such people are a burden on society.
Our commentary last month was written by Stephanie Woodward, J.D., director of advocacy at the Center for Disability Rights in Rochester, New York. Woodward told the story of a person with Lou Gehrig’s disease (amyotrophic lateral sclerosis, or ALS) and how she wanted a physician’s assistance to die because of the loss of dignity, forced dependence on a wheelchair and her need for assistance with hygiene. The media picked up the story and used it as a case for the justification of assisted suicide. To any person diagnosed with a life-altering or terminal condition, the right to choose death can feel like an important option. But I know from experience that while it takes time (a lot of time) to adjust from living independently to being completely dependent, life takes on new meaning during and after that adjustment. I know about the sense of loss, feelings of indignity and adjusting to acute and chronic pain; after 40-plus years with a spinal cord injury, I can say that some of it never goes away. But while the adjustment is gradual, it brings new understandings of the worth of life and what dignity really is.
Another perspective is offered this month by Dr. Seth A. Morgan, a board-certified clinical neurologist and fellow of the American Academy of Neurology: “The movement to authorize aid in dying is based on respect, dignity and autonomy. This is the very philosophy that drives our [the disability community’s] movement for equal rights.” I’m not sure that these are exactly the rights that Ed Roberts and the other frontline activists were pursuing in their formation of the disability rights movement in the 1960s and 1970s. Morgan suggests that the disability community’s “agitation” in opposition to assisted suicide only perpetuates the stigma of people with disabilities as being weak, vulnerable and unable to make their own decisions.
I do think there are several aspects of this issue that neither of these commentaries have addressed. For instance, how does physician-assisted suicide affect the individual’s family, friends, physicians, nurses and caregivers? What about palliative and ameliorative caregiving? Could a new form of hospice be an alternative to suicide? In such a setting, if the traditional palliative care fails, there could be safeguards with expanded psychological support. The act of assisted suicide could still be performed if the person wants it, but in a setting where it could be overseen and protected from abuse.
For people with disabilities, as for many others, assisted suicide and euthanasia have troubling links to what has, at other points in history, been called eugenics, the “science” of improving the human race by eliminating those with undesirable characteristics. “This [assisted suicide] is a method of normalizing of what should be unequivocally resisted,” said Wesley J. Smith, senior fellow at the Center on Human Exceptionalism’s Discovery Institute.
In closing, I’ll move from life and death to day-today: How about this weather? Wouldn’t it be nice to continue a winter like we’ve had? They keep talking about snow but it comes and goes in just a day or two. But let them be wrong; I’m not complaining. Let’s hope we’re still talking about this thirtyish degree weather next month.
Correction: In our December issue, the name of the photographer for the Charlie Award banquet was spelled incorrectly. Erin McKiel was the photographer who took such great images that night.