Human Exceptionalism

A Life Ends That Was Worthy of Life

In this utilitarian age when bioethicsts tell us that some lives are not worth living based on “quality of life” judgments, it was interesting to read about Dianne Odell, who just died at age 61. She had polio when she was 3 and spent most of her life sustained by an iron lung and the loving care of her family. From the story:

Life at 133 Odell St. came to revolve around Dianne, with her parents taking turns going to church so someone was always home to feed her and talk to her. The family never took vacations. At Christmas, they would squeeze Dianne, inside the metal machine, into the dining room for the holiday dinner

But today, some utilitarian bioethicists think such devotion is beyond the pale, and indeed, that the requirement of family sacrifices on behalf of an elderly or disabled person triggers a duty to die. Writing in a way that could be applied to Odell’s situation, John Hardwig wrote in favor of the duty to die in the Hastings Center Report:

A duty to die is more likely when continuing to live will impose significant burdens–emotional burdens, extensive caregiving, destruction of life plans, and, yes, financial hardship–on your family and loved ones. This is the fundamental insight underlying a duty to die.

Good thing that Odell and her family didn’t have such a crass attitude about those who are dependent on others for their care. Indeed, not that it made a difference to her inherent value and worth as a human being, Odell graduate high school and became a writer and a public speaker.

Her story reminds me of my late good friend Mark O’Brien, stricken by polio at age 6, who spent the rest of his nearly 50 years of life living with the assistance of an iron lung. He graduated UC Berkeley, lived in his own apartment thanks to the independent living movement, and became a journalist and powerful advocate against assisted suicide. The City of Berkeley declared two “Mark O’Brien Days” and he was the subject of the splendid documentary Breathing Lessons.

Too many of us today–particularly among the big-brained set–are ready to write off the profoundly disabled as so much unwanted ballast. But Mark O’Brien and Dianne Odell remind us that we are all equally to be treasured, valued, loved–and if necessary, cared for–as precious brothers and sisters in the human community.