Disabled Rally Around Terri Schiavo
By Hugo Kugiya
November 6, 2003
Unable to speak and barely able to move, Rus Cooper-Dowda could do little to prevent her death. Only 30, she had developed a serious form of lupus that had left her in what doctors incorrectly thought was a vegetative state.
She knew the doctors and nurses had all but given up on her because she could still hear. She said later that she listened to them describe her prognosis as hopeless.
They said that she would never live a normal life and that if she took a turn for the worse, no extraordinary measures should be attempted to save her life.
Contrary to their expectations, Cooper-Dowda, now 48, survived. Over the years, she recovered some use of her body, earned a graduate degree and gave birth to a son who recently entered college.
Doctors couldn't explain why her condition got so bad 18 years ago, nor why it improved so much, she said. Which is why she thinks Terri Schiavo, the severely brain-damaged St. Petersburg, Fla., woman, should be helped, not left to die.
"People say she'll never fully recover," said Cooper-Dowda, a writer and teacher from Florida. "My feeling is, 'So what?' There is something between death and full recovery, and it's called living with a disability."
She is one of many disabled people who see Schiavo as a cause mirroring their own, even if their medical circumstances differ. (Cooper-Dowda was incapacitated for months, not 13 years like Schiavo.) Individually, they have spoken out. Last week, they took a collective stand.
"This is a real scary prospect for us, because there are lots of disabled people who can't communicate verbally," said Andy Imparato, president of the American Association of People with Disabilities.
Imparato and association board members, with the blessing of other disabled rights groups, released a written statement condemning the court's decision to allow Michael Schiavo to remove his wife's feeding tube. Such action should be confined, the statement said, "to those situations in which an individual's condition is terminal, death is imminent and any continuation or provision of treatment, nutrition and/or hydration would only serve to prolong dying ... "
"No one other than Ms. Schiavo, not even a guardian, has the right to make assumptions about the quality of her life," the statement continued.
While Schiavo's case has been seen largely as an issue of the sanctity of life versus personal choice, of conservative against liberal, of religious values against secular ones, the concerns of disabled people are more nuanced and personal and do not depend so much on politics or ideology.
"To us, it's more complex," Imparato said.
Although doctors disagree on her condition, a state court determined that Schiavo, 39, is in an irreversible and permanent vegetative state. After her husband received permission to remove her feeding tube, her parents, Bob and Mary Schindler, harnessing the momentum of public outcry, convinced lawmakers and the governor to help. In less than 48 hours, the Legislature passed a bill giving Gov. Jeb Bush the authority to order the tube replaced, which he did Oct. 21.
Michael Schiavo is fighting the law in court, charging that it interfered with his wife's right to refuse medical treatment and that it violated the state constitution by passing a law that defied a court order.
While she was incapacitated, Cooper-Dowda tried to communicate by writing in the air with her finger. When she heard doctors discussing the removal of life support, she tried to spell the word "no." She even spelled it backward in hopes they would recognize it as a word. Doctors decided her movement was seizure activity and sedated her. The more she moved, the more she was sedated. Finally, a nurse became curious and put ink on the end of Cooper-Dowda's finger, so she could write the letter Y or N, for yes and no.
"It's still terrifying how close I came to death," Cooper-Dowda said, "because of all the assumptions someone else made about the quality of my life. ... When someone says, 'I wouldn't want to live like that,' it's believing it will never happen to you. When it does, it's not a bad life or a useless life. It's a changed life."