When my children were small, I made it a point to have them order for themselves in restaurants. The purpose was practice in using their own voices to assert personal wishes. One of the many experiences shared by children, the elderly and people with disabilities is that they are not expected to speak for themselves. Others speak around, over and about them.
Being physically unable to speak for ourselves is one of our deepest fears. I thought about this recently on the eve of serious surgery. What did I want to happen if something went awry and I was unable to communicate my wishes? If my life was hanging by a thread, how long was too long to wait for recovery? And, most importantly, to whom could I entrust such decision-making power?
The story of Terri Schindler-Schiavo, a 39-year-old Florida woman, might be a real-life enactment of anybody's worst nightmare.
In 1990, at age 26, Terri collapsed and suffered severe brain damage. In 1993, the court awarded her $750,000 in a malpractice suit, money to be set aside for her "care and rehabilitation." Her husband and legal guardian, Michael Schiavo, told the court that he intended to take nurse's training to learn to care for his wife - but shortly after receiving the settlement, he instructed the nursing home staff to withhold all rehabilitation and therapy. Nurses who gave her ice chips to help her learn to swallow and who moved her limbs to improve range of motion were ignored or terminated. Family members were denied visitation rights.
For the past eight years, Schiavo and Terri's parents, Bob and Mary Schindler, have been engaged in a legal dance, vying for nothing less than Terri's life.
Schiavo maintains that his wife is in a "persistent vegetative state" and that the tube through which she receives food and water should be removed.
But Terri's family, several nurses, and a cast of neurologists have seen her smile, laugh, and cry in response to sights, sounds and visitors. She has been heard to utter simple words - Mommy, help me, and pain - and makes a variety of preferences known through her nonverbal responses.
For the second time in two years, Michael Schiavo secured a court order to remove Terri's feeding tube. The first time, in 2001, Terri's parents got a "stay of execution" after 60 hours. This time, the tube was removed Oct. 15. Our laws have flaws and courts move slowly, but something wonderful happened this week. In a special legislative session called by Florida Gov. Jeb Bush, a new law was passed Tuesday. "Terri's Law," as it is called, places a moratorium on illegal starvation and dehydration and, by executive order, Terri's tube was reinserted.
It is beyond frightening, this fact that our legal system could authorize starving this woman who has become voiceless.
What would Terri Schindler-Schiavo say if she could speak? Would she say, "Yes, I want to die a slow and painful death"?
It's tough to know what she would say if she could. My guess is it would something like, "Please work with me, try to help me learn to swallow again, or hold another's hand, to speak for myself."
Of course, none of us can really be sure - not her husband, her parents, the lawyers or the judge.
And that's the whole point: No human being should be given sole power to speak for another.
Contact Deborah Kendrick by phone: 673-4474; fax: 321-6430; e-mail: dkkendrick@earthlink.net.
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