WASHINGTON (BP)–Disabled Americans feel vulnerable in the wake of Terri Schiavo’s death and need societal and legal changes if their lives are going to be protected, leaders of two disability organizations said.
In the hours after Schiavo died March 31, both Joni Eareckson Tada and Diane Coleman said the brain-damaged Florida woman’s death and the events leading to it do not bode well for other severely disabled people unless some changes are implemented.
Schiavo, 41, died nearly two weeks after the tube that provided her with food and water was disconnected at a state judge’s order. For years, her parents and her husband had been in a legal struggle over whether she should live or die. Acting as her guardian, Michael Schiavo, her husband, gained court approval for the removal of the tube, saying she did not want to live in a severely disabled state, though no written direction from his wife existed.
Though Tada said she prays God will use Schiavo’s example “to stave off this terrible culture of death and give us a fresh re-energizing to build a culture of life,” the popular evangelical Christian author and speaker also said her death “alarms me deeply.”
“The death of Terri Schiavo will adversely impact literally thousands of Americans who have severe mental incapabilities whose legal guardians might not have their best wishes at heart,” Tada said on the April 1 radio broadcast of Focus on the Family.
Coleman, president of Not Dead Yet, told Baptist Press, “[W]hat we are seeing here is the dismantling of the constitutional rights of people in guardianship. No longer will there be the presumption for life.
“The social presumption that [Schiavo] would be better off dead appears to have influenced the decisions in the case,” Coleman said. “We feel threatened by this, almost as if there is a cognitive test for personhood under the law.”
Joni and Friends is a Christian ministry to the disabled that Tada started in 1979. She became a quadriplegic in a diving accident at the age of 17. Her testimony of God’s work in her life has become well-known among Christians throughout the world.
Coleman, a lawyer, founded Not Dead Yet in 1996 to combat assisted suicide and euthanasia on behalf of the disabled. She was disabled at birth and has used a wheelchair since she was 11.
Both of their organizations agree on some steps that need to be taken to protect the rights and lives of the disabled. They recommend in statements on their Internet sites there should be:
— Federal review in state cases of contested decisions about withdrawing feeding tubes when there is no advance directive or personally chosen guardian.
— State-by-state reform of laws governing guardianship and healthcare decisions in order to protect against involuntary euthanasia.
— A moratorium on the removal of food and water from severely disabled people when the latest diagnostic procedures are unavailable.
In all, Not Dead Yet has listed eight steps on its website, www.notdeadyet.org, that it says need to be taken to guard the disabled. Joni and Friends also calls for a change in terminology in a statement on its site, www.joniandfriends.org. Society must stop using the phrase “persistent vegetative state,” Tada said.
“There’s just too many people with significant disabilities who have been called vegetables, and this must stop,” Tada said on Focus on the Family, which was taped the day Schiavo died. “That is beyond demeaning. It is dehumanizing, and when people with significant disabilities are labeled like that, then the discussion all too quickly next turns to death, pulling their feeding tube or warehousing them in a hospice.
“Something else that has bothered me as I have listened to the national media — everybody has been talking about whether or not Terri is ‘going to get better someday,’ as though that fact was a criteria for her life,” Tada said. “However, millions of Americans with disabilities will ‘never get better’ by today’s standards, and we believe that a quality of one’s life should never be a criteria to put them to death. Life is the most irreplaceable and fundamental condition of what it means to be human. It’s a gift of God, the author of life, and disabled people, no matter how significant their handicapping condition, have that right to life.”
Coleman told Baptist Press her organization would not have filed three friend-of-the-court briefs on behalf of Terri Schiavo had she chosen her husband as her guardian and made clear her intentions regarding her care. The court’s willingness to grant the guardian his request in the Schiavo case contrasts with reports of parental abuse and neglect when society expects the government to intervene, Coleman said.
“Unfortunately, people with disabilities are not so valued [as are children],” Coleman said. “We share a social devaluation that is so strong that most people are sure we are living a fate worse than death and that they would never want to live” that way.
“[W]hat we’ve learned like any other minority group, you might say, is you can’t trust majority culture…. In some cases you can’t even trust your own family …,” she said. “While many caregivers are wonderful and value us, not all do.
“The most telling thing is [Schiavo’s] guardian forbade qualified people from giving her swallowing tests, swallowing therapy” the last seven years, Coleman said. “She might not have needed a feeding tube really. A lot of people in nursing homes are on feeding tubes, not because they cannot eat but because there is not enough staff to feed them. That’s the context we are in.”
For Not Dead Yet and at least some other disability organizations, this is a civil rights issue, not a sanctity-of-life or culture war issue, Coleman said. Her organization is as concerned about conservatives cutting Medicaid and Medicare funds as it is about liberals wanting to kill the disabled quickly in the name of compassion, she said.
A bill to legalize physician-assisted suicide has been introduced in California, and Tada fears what happened in the Schiavo case will embolden its supporters in the state legislature.
“There will be those who will look at the situation of Terri Schiavo and turn it on its head,” Tada said. “Pro-euthanasia advocates … will say, ‘Oh how awful that this woman had to linger so long toward her death. She should have been aided with a lethal injection of three grams of phenobarbital to hasten her death more quickly and more compassionately.’”
Tada said she was lying on her back as she was interviewed for Focus on the Family. She had recently recovered from pneumonia and had been mostly in bed for four or five days with a pressure sore. Shortly before the interview, a friend had fed her by hand.
“It underscored how much people like me and people like Terri Schiavo depend on strong advocates to be by our bedside to fight and to protect and to safeguard the protections around people with severe disabilities,” Tada said.
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