When I was an undergraduate at the University of Wisconsin-Madison, and for a year or so afterwards, I worked with people with developmental disabilities.
Most of the people I worked with were adults who lived in group homes. Some were quite high-functioning and had jobs and mostly just needed someone to drive them around, make them meals (to the best of my meager ability), administer medication and things like that. Others needed much more.
Corrin, for instance, had significant cognitive disabilities and used an electric wheelchair. Rick, who had profound mental disabilities, was deaf and used a wheelchair, also needed a lot of care. Then there was Jeff, who had fallen of a rock ledge while out hiking as a teenager and lost all movement on the left side of his body (though neither his mind nor his bawdy sense of humor had been diminished).
All of them (and others I worked with) needed a lot of help, especially in the bathroom — that is, with bathing and toileting. Some used colostomy bags that needed emptying and cleaning several times a day. Others needed help wiping or using enemas.
None of this bathroom work was particularly enjoyable. But neither was it that big of a deal. It was always something that just needed to be done, so we did it and went about the rest of our day. There was never any sense of shame or embarrassment. Any awkwardness could be downplayed with a joke or sarcastic remark.
Never for a moment did I imagine that any of the people I worked with lacked dignity because of their disabilities or because of the help they needed to accomplish the small but necessary things of life.
Nor did it occur to me that any of them would value their lives any less because they needed help doing these things. In fact, in some ways, it was in their vulnerability and dependence that their dignity shone the brightest. And perhaps the same could be said about me, their humble helper.
I tell this story because, as I see it, in the debate over physician-assisted suicide (or aid-in-dying), not enough attention is given to the meaning of dignity and, specifically, to attempting to answer a fundamental question: Can dignity be lost or is it innate?
On Monday California Gov. Jerry Brown signed a bill into law allowing doctors to prescribe lethal doses of drugs to terminally ill patients.
Although Brown didn’t utter the word “dignity” in announcing the new law, it is often employed in news reports and by proponents of such laws. Indeed, the Oregon law after which the California law is modelled is called the Death with Dignity Act.
The d-word has been used a lot in California too. “This is the biggest victory for the death-with-dignity movement since Oregon passed the nation’s first law two decades ago,” Barbara Coombs Lee, president of Compassion & Choices, said about the California law after Brown signed it.
The physician-assisted dying movement has embraced the term “dying with dignity” as a euphemism for autonomy and control. It is a perceived lack of dignity and control — not physical pain and suffering — that is the reason most decide to take their own lives
According to one survey, among Oregonians who have committed suicide over the last 18 years, 9 in 10 offered “loss of autonomy” as a reason for doing so, and 8 in 10 listed “loss of dignity.” More than half said a “loss of control of bodily functions.” Only a quarter listed “inadequate pain control or concern about it.”
The problem is that by wrapping their movement in the concept of dignity, supporters of physician-assisted death imply that dignity is diminished or lost when someone chooses life under very difficult circumstances or when someone struggles and suffers through disability during life or at the end of life. It’s an extremely dangerous concept.
It is difficult to be totally dependent on others. We live in a culture that’s obsessed with youth and health and control and autonomy. To lose one’s youth and health is seen as a regrettable but necessary part of life. To lose one’s autonomy or control is seen as a tragedy that justifies ending that life. But it need not be so. There is dignity in the struggle, in suffering through to the end, even when one no longer has control over his or her bodily functions.
As Americans, we need to have more and better conversations about death. Included in those conversations needs to be honest talk about the dignity that each of us possesses — dignity that is sometimes most apparent when we are at our most vulnerable and dependent.
Daniel Allott is deputy commentary editor for the Washington Examiner
