What is dignity? It seems a simple question. Merriam-Webster calls it the quality of being worthy, honored, or esteemed, also seriousness of manner, appearance, or language. So dignity is something a person has, and something a person can be treated with. What gives a person dignity? Who should be treated with dignity?
In out society, dignity is almost always afforded to authority and to those in power. It is ascribed to anyone who exhibits admirable traits. It has to do with not being exploited, to not begging, essentially not showing weakness. Weakness robs us of dignity in western society. Children therefore aren’t dignified, they are childish. Beggars aren’t dignified. The poor are not dignified and to ask for a handout is to lose a measure of respect. To have dignity means to be self sufficient.
In medicine, we try to live up to a slightly higher ideal. In recognition that dignity can easily be compromised in the face of illness, our training places a premium on maintaining the dignity of the patient. Illness is a situation we all fear, precisely because it robs us of our dignity. What could be more undignified than a hospital gown, open in the back, to be sedated with tubes in every orifice, to be tied down to your bed for your own safety? These are measures that should not be taken lightly by medical professionals, and yet they are so commonplace this can become difficult to remember. People who are ill are in need, and that is an uncomfortable place to be.
No one is more vulnerable to compromised dignity that those who are both children and chronically ill, particularly if their deficiencies can be ascertained by looking at them and interacting with them. This is the population I work with. This is the population I find vast joy and dignity in, for those who can see past the veneer and find it.
A legal mandate for dignity in education was handed down by the US government with the no child left behind act Essentially our government has decided that every child is entitled to education that can develo0p them to their fullest potential, no matter what that potential is Of course, proscribing the mandate and enacting it are two totally different things. This is where our public schools so often fall short.
A lawsuit has been raised recently in the Mapaville school district in Missouri, complaining about teachers complete lack of respect for their students. Mapaville is the system all the other districts in the state send their severely disabled children too. After many parents became concerned when children came home with unexplained bruises. So they hid audio recorders on the wheelchairs of their patients.
What they found horrified them. In one incident, the school nurse discovered that ringing a bell triggered a seizure in a student and decided to show all the other caregivers to their laughter in the background. The superintendent of the school, when asked if he thought intentionally triggering seizures showed respect, stated he did not know.
In spite of the eruption of this scandal in the news, this nurse maintains her position at the school. Her sixteen years protect her from he indignity of being fired. Below is a video explaining the situation. The recording and testimony of the nurse starts 1:39 into the recording. The Principal’s response can be found at 2:12
Why is it so difficult to define what it means to respect the disabled? I believe it is because we are not generally accustomed as a society to doing so.
The State of Washington recently passed the death with dignity act, becoming the second state in the union to legalize physician assisted suicide. The premise of the law and its title really do seem noble. Dying from a lost cause in a hospital oriented to keep your heart beating at all costs as long as possible results in some horrifying situations, futile intubations, brutal CPR. It burdens ICU personnel especially, making cynicism and burnout rampant. The ideal of a more dignified death is not an inherently evil one. After all, death is natural and something every living thing will go through at some point.
However, I suggest that implicit in the title, “death with dignity” is an intimation that indignity just may be worse than death. In a society that equates strength and independence with dignity, this frightens me. For the disabled population anyway, I hope and pray we learn first to afford dignity in life, before we ever begin to equate dignity with death.