Introduction: Let’s Begin Here
I’ve never been one for dissertations.
That’s just not me. I barely squeezed by in Philosophy 101 at the University of Maryland. Trying to wrap my mind around hard-hitting concepts while my professor read his class notes in standard lecture-hall monotone? Forget it. My mind was already down at the college cafeteria perusing the menu.
Don’t give me the War and Peace version, I’ve always thought. Just answer my questions. Come on, aren’t right and wrong as easy to discern as black and white, night and day? Don’t confuse me with questions like “Are moralistic codes situational or rigorously rigid?” Just state the plain facts: Is it immoral? Illegal? Unethical? Just tell me.
Too often I refused to take the time or mental energy to hear and consider, and so I walked away thinking no meaningful answer existed.
Maybe you are like me. It’s far too easy to take a casual approach to looking for tough answers to even tougher questions. We go about our days scrolling our Facebook feed, hovering on the edge of heated debates in the employee break room, or strolling down the sidelines of an emotional ethical issue, only catching enough context to form an occasional idea or two. Or perhaps it’s not a lazy mental attitude at all. Maybe we’re fearful of tough questions . . . or the answers.
What happens, though, when we no longer have the luxury of a casual approach?
A medical report has us up into the wee hours googling to find the medical prognosis for osteogenesis imperfecta. A debilitating accident has us yelling at everyone within earshot, demanding a reason. A teenage daughter downs a bottle of pills, and we stand shocked and defeated, wondering what to do. When tragedy strikes, suddenly the ethical issues pull us in, and we simply cannot be satisfied until we find answers.
That is what happened to me.
A diving accident as a teenager left me totally, permanently paralyzed and in deadly despair . . . a cancerous tumor ate at my five-year-old niece’s brain until she withered and wasted away . . . old age and a series of strokes gripped my ninety-year-old father in a web of tubes and machines.
Somewhere between those family tragedies my thinking shifted, and I was forced to face issues I had too long ignored. Ethics was no longer confined to the classroom. Standards of moral judgment now had flesh-and-blood, life and death reality. Why not cut short the suffering, or have someone do it for you if the pain and agony of your disability are too great to bear? Why not leapfrog the dying process and mercifully end the life of a tortured little girl? Why not compassionately pull out the plugs and let an old man die? I had to find answers. That is, if there were answers.
I needed answers for more than just my family’s living nightmares. My years in a wheelchair introduced me to the world of advocacy and with it to thousands of people with disabilities who were either sinking into or surfacing out of suicidal despair. Decades of visiting hospitals and rehab centers introduced me to the business executive with ALS (Lou Gehrig’s disease) whose body was shrinking and shriveling, the young athlete paralyzed from a spinal cord injury and living in a nursing home, the Vietnam veteran coping with a strange new mental illness, and the teenager with cerebral palsy sitting on the sidelines, feeling as if she were nothing more than an observer of life. Each of these individuals, and thousands more, have been periodically tempted to detour the extreme suffering or mental anguish by escaping into death. And each one asked the same question: Why not end it all?
Back when I served on the National Council on the Handicapped under Presidents Ronald Reagan and George H. W. Bush, I quickly saw how politicized these questions were becoming. For those years, I was no stranger to the marbled chambers of government. I listened to the “Why not end it all?” question batted back and forth like a tennis ball between politicians and legislators, doctors and disability associations. Even now, with my position in advocacy less official, I follow court rulings as gavels bang, rendering judgment for what will happen at the bedsides of people who are comatose, severely ill, or disabled. I keep an eye on the headlines every time aid-in-dying initiatives crop up on state ballots.
Behind every news story, every initiative on the ballot, every sign carried by either a right-to-die or right-to-life protester, is a family. A family like mine. A person like me. A person, a family for whom my heart bleeds.
My heart goes out to these people because I have been there. I have lived their story, as a severely depressed disabled person, as a family member, as a friend, as a national advocate, and as a political activist. Their hurts are mine. Their pain I have felt in my own chest. Like them I have searched my own soul, wrestling with the toughest of ethical questions. Questions that do, indeed, have answers.
Although my depression has at times seemed as paralyzing as my spinal cord injury, I have found an answer that makes life worth living. My family also found an answer for my suffering, cancer-ridden niece. And perhaps, most poignantly, we even found an answer for my dying father.
I am convinced that the principles that guided me and my family through the nightmarish maze of depression, suicidal thoughts, suffering, and death can help others. What we learned as a family can benefit other hurting families.
And that’s the reason for the book you hold in your hands. Perhaps you are the quadriplegic in a wheelchair or the young mother of a little girl dying of a degenerative nerve disease. You may be sitting at the bedside of an elderly parent who is sinking deeper and deeper into dementia. You may be a friend or family member looking for how to guide a loved one through a dark valley. Or maybe, just maybe, your life does not even touch the world of the terminally ill or dying or disabled. You are just plain tired of living, for whatever painful reason. Your problems have piled on so high that they simply wear you down. Pain has become numbing. Your thinking has become clouded. You are tired, so very tired. Quiet desperation has settled in, and you couldn’t care less if there are answers. You only want the hurt to stop.
There is hope. An answer you can live with is within reach. Now, I don’t want to come across as one of Job’s comforters, dispensing cliché answers that don’t fit another person’s problems. I wouldn’t want to ask you to have the patience of Job to put up with that! And don’t worry; what you hold in your hands is not a college treatise.
This book is not about systems of ethics, but about people like you and me and the moral judgments we must make.