The Doublespeak of 'Death with Dignity'

THE BALTIMORE SUN

Four bills currently before the Maryland State Legislature make me very nervous -- Senate Bills 664 and 676, and House Bills 1243 and 1432. They are bills that intend to legalize euthanasia or mercy-killing.

I sat in the Senate hearing room the other day listening to testimony after testimony from medical doctors, nurses, lawyers and other persons espousing this notion of "dignified death" for the "medically dependent" who receive "medically ineffective" treatment.

I do not agree that Maryland needs a "dignified death" law. The proposed bills are based on a set of definitions which we -- people with disabilities -- dare to challenge. So far, only medical doctors, nurses or lawyers have had the chance to define such terms as "incapacitated," "quality of life" and "medically effective." Those of us with disabilities are redefining these terms with our lives every day.

According to the medical community, many of us were not supposed to have survived our disabilities or illnesses. Yet we do. I was once told that I would not live to see my 30th year. Yet I am nicely thriving today with a motorized wheelchair and a respirator that helps me breathe at night. I must be a medical aberration, then, to the doctors who can neither completely heal nor kill me, because the current medical technology I use enables me to survive.

My elderly friend John sent me a colorful set of rosary beads the other day. He worked on them for days. What makes them precious is that John is 83 years old and surviving through a feeding tube. He has been ill for many months, and recently a doctor asked the family if they wanted to keep John.

The question greatly disturbed them. John is lovingly cared for by his family. His children take turns feeding him, bathing him, changing him, praying with him. John has not diminished as a human being and his life is not devoid of quality. He receives royal treatment from his wife Katherine and the children he supported and loved all his life. His daughter Mary gave up her job to care for him, and his sons Don and Paul stay up late at night to give Mary a hand. I dread to live to see the day when true stories like this no longer happen.

Through all their euphemisms and doublespeak, these "death with dignity" bills conclude that we have the "right to die" if we do not pass the cold-blooded standards of having acceptable "quality of life" or as needing only "medically effective" procedures. These bills objectify terminally ill persons and further stigmatize people with disabilities through definitions like incapacitated" or "vegetables."

Thus defined under these bills, we lose all self-determination and autonomy. There is complete disregard for our preferences, religious values and self-worth. Our civil rights are automatically surrendered to medical doctors and our survival is fully entrusted to those who can abuse powers too broadly defined.

These bills endanger the lives of people with mental disabilities or mental retardation, whose struggles with pain or death can be confused by even well-meaning relatives and friends who don't really understand disability. Such people may be extremely depressed or simply unable to reasonably process medical information.

Accident and crime victims who are unconscious or in a coma may be similarly at risk. Is it not frightening to think that after you were hit by a car, for example, or shot by an assailant, the next biggest danger to your life is the very doctor who is supposed to treat you, who might decide you are not worth saving?

And what is this talk of withdrawing food and water from people who are dying? I thought that only people from the Stone Age left their disabled and elderly out in the forest to die.

In the 1930s, people with disabilities were the first to be decimated by Adolf Hitler in Germany. He did it in the name of ethnic cleansing. Today, in the guise of "medical ethics" and "health-care procedures," our constitutionally elected representatives are proposing to use medicine and health-care professionals as tools for "quality control."

Legalized euthanasia will put an unfair burden on medical profes-sionals to abandon medicine and turn instead to economics. Dr. Jack Kevorkian in Michigan, the pre-eminent "Merchant of Death," no longer heals; he sells "death with dignity." Are we in Maryland buying this?

The fact is, we cannot eliminate suffering and pain altogether. They are a part of life. Whether we like it or not, people get sick, and some of us become disabled. Don't kill us because we become too expensive to treat or because you do not understand our suffering. Don't kill us because we remind you of your vulnerability.

Instead, let people with disabilities prove to you that there is life after a disability, that life is possible in spite of chronic pain. For it is not our disabilities nor the pain of dying that rob us of our dignity. What robs us of our dignity is rejection, fear and prejudice -- the narrow, limited perception that our lives are no longer worth living because we can no longer pass as "normal" or "healthy" like the majority.

In 1974, I had the privilege to visit my grandfather many times as he lay sick in bed. He was once a very brilliant school principal and writer, but during the last year of his life, he could no longer raise a finger to hold a pencil. My family gave him total care. When we found tears in his eyes, we would replace those tears with kisses on his forehead.

One day, as I watched him. I became distraught. I could no longer bear to see my grandfather suffer. His suffering and pain did not make sense to me, and I began to ask God why. During the next few days, I noticed that my grandfather was calm and collected, as if in the attitude of prayer. He didn't communicate with me, but I sensed that he was in a dialogue with Someone. It dawned on me that there was something more to my grandfather's life than just his physical body -- there was his spirit now preparing to depart. It was as though he was given this special time to lie still in bed, with no other distractions but to do some spiritual "house cleaning."

As I reflected, I realized that it was I who was struggling, not my grandfather. My secret wish for him to have a quick, painless death had more to do with stopping my own pain and helplessness at seeing him suffer than it had to do with compassion for him. For he was dealing with it with amazing solemnity.

A few days later, my grandfather died peacefully in his sleep. I felt consoled for I knew that he was prepared. He had time enough to spiritually pack for his journey. We were not in a hurry to kill him off. To have interfered with his dying in any way would have violated his dignity as a man.

As they prepared him for burial. I could not help but feel respect for this body that held for over 70 years this soul who finally taught me the value of human suffering. I shudder to think of what delicate processes, unseen by the naked eye, we disrupt and pre-empt when we, in our haste, and as mere human beings, rush to terminate life's natural processes.

Lillibeth Navarro is a disability-rights activist and writer.

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