I'm very glad that Joan Halifax acknowledged the mystery surrounding death and dying and the sanctity of life. My concern as a mother of a fantastic 17-year-old young woman who happens to have been born with a disability is that we are careful not to judge quality of life based on our presumptions about other people. Often able-bodied people assume that because a person can't do certain things for themselves that they are a burden. In fact, it's an honor to care for another person and it's an honor to be cared for. After all, isn't that part of our lesson here on earth? To connect with compassion? To love one another?
People who live with severe disabilities are often left out of this discussion, and many of them have a very interesting perspective. I know people who live and work every day who need a ventilator to live. They tell me that they are happy to be alive. I know many people who live happy productive lives who, before they became disabled, may have said or thought, "I wouldn't want to live that way." But they have adjusted and still find many ways to contribute to the lives of others around them. I saw a documentary about the life of a writer who lived in an iron lung because he had polio. He said that he had thought he would want to kill himself if he had to live that way. But when he found himself actually in the situation, he discovered that he was comfortable in the iron lung and actually felt safe there.
Doctors are fallible and can't predict the future. We will never understand why we are here and how our presence affects those around us. When I was pregnant, the doctor who told me I was carrying a baby with a birth defect painted a very bleak picture of my life and hers. I cried. I prayed. I read all of the medical books. I worried that perhaps I wouldn't be able to love her. I worried about her being ostracized during her childhood. What I hadn't anticipated is what an absolutely joyful and transformative experience it would be to become a mother of this child. She has always been empathetic, outgoing, understanding, intelligent, and extremely spiritual. She has expanded my ability to love and has opened the door to my meeting many many incredible people who I might not have taken the time to get to know simply because they are different or disabled. Let's be careful and not lump people with disabilities in this "end of life" "dying with dignity discussion."
The fact is, we didn't really know what Terri Schiavo's wishes were. We never did find out how she became so severely disabled. And not having spent time with her, we don't know how she contributed to the lives of those around her after she became disabled. Let's be careful about the end of life decisions we make before we get to the end of our lives. Perhaps in the end of life, learning to allow someone to care for us, would be learning to be loved. Perhaps the person caring for us would be learning and expanding their ability to love. The truth is we don't know and won't know until we get there. Thank you for your very thoughtful and provocative show.
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