Posted on 04/22/2005 10:18:32 AM PDT by amdgmary
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 some steps 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 Web site, 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.
This is all just HOOPLA to instill fear in the elderly or those not capable of putting together a logical train of thought. Further, anyone, regardless of age, who has NOT completed such a form is taking a great risk. I won't add "an idiot" since I know many people are already getting over the hype instigated in the Schiavo case.
BAH! Your "form" won't save you. I can guarantee you this: give me enough hearsay evidence piled up in a case like it was in the Schiavo case, the ear of a sympathetic judge (like Greer), a slew of conflicted witnesses whose testimony is given decisive weight to the exclusion of contrary testimony, and I can shred any "form" you might have into so much chaff and scatter it to the legal winds.
And don't start with the "the courts have never disallowed written wishes" crap of an argument, either. Because time was when the courts were guardians of inalienable rights, and were there to protect the most vulnerable and helpless among us. Now they are killers of them.
Because what this case has proven is that your wishes won't matter in circumstances like this. The desires of others will. What that means is that individuals who stand innocent in the eyes of the law, who have committed no crime nor are even accused of one, no longer have control of their own destiny. Someone else does, and it is just a roll of the dice as to whether they will have your, or their, interests at heart when they decide if you should live or die.
I used to have very positive feelings about hospice as well. I learned.
My ex-husband's grandmother was put in hospice after suffering for years (she was supposed to die "any month now" for over 10 years) from emphezema. She was apparently alert and seemed ok (or no worse than she had) the day before she died (within a week of going to hospice). We were due to visit her later the day she passed away. Now, this has me wondering if she wasn't "helped along."
I saw the same thing where I used to work. A resident who was put on hospice, was out in her wheelchair chatting away with the nurses and very OK.
Then her meds were changed and the next day, she was gone.
I'm appalled by how this country views our elderly (one of the prime targets of this type of travesty). I cannot believe that "the Greatest Generation" is in the kind of danger it is now after fighting so hard sixty plus years ago for our freedom and the freedom of the world. This is what they fought AGAINST (as one WWII vet recently told me). Remember all those great pictures of the eighteen-twenty somethings in those sailor and army uniforms from the forties? Remember the Rosie the Riveters and all the pics of them? The nurse in Times Square being kissed by the jubiliant sailor when news of Japan's surrender was announced? The youngest of those fighters are now in their eighties. I wonder if this is how they are being repaid for their heroism...death edicts issued by the liberals who would have protested THAT war, too (and some did).
I still do not understand why, when Terri's feeding tube was pulled, the parents were not allowed to administer nourishment (liquids) by mouth.
If she could not swallow, what harm could it have done? And please don't say "IT COULD HAVE KILLED HER"
sp
Ping to self for pingout.
As well they should feel threatened. The above attitude exhibited by so many is utterly appalling and frightening! And yes, there is a test for personhood, and for many, Terri failed that test.
The author makes many other salient points. Well done!
bttt
"May God forgive us"
May God punish us first until we repent, change the laws even if it means a second American revolution, then we ask for forgiveness!
The rot has cut into the heart of our nation...it needs to be cut out...!
There is a charming little old Lady from LaGrange, GA, now being treated in B'ham, AL, who had such a written instruction, stating that she didn't want anyone withholding food and water from her if she became incapacitated. Oddest thing, a family member went to a judge and got appointed guardian and ignored Mae's directives in order to starve her to death. It didn't succeed, thanks to Mae's relatives in B'ham.
No, the law was changed to include hydration and nutrition in 1999; Greer made it RETROACTIVE to 1990 just to include Terri. He deliberately murdered her.
Hello! Some folks are mentally challenged, meaning they can't just simply fill out a form for themselves. Meaning they would have to depend on someone else to make decisions for them. Meaning some have family members like MICHAEL SCHIAVO and YOU CAN'T TRUST PEOPLE LIKE THAT!! Meaning the disabled are at the mercy of some monsters.
Something must be done to protect vulnerable people.
The rot has cut into the heart of our nation...it needs to be cut out...!
I agree.
Post #9 scared me. I think that might have happened to my ex-husband's father.
This was a rational discussion of the real issue for most of us of Terri's case. It wasn't forcing someone to live against their will, or inserting ourselves in "their" decision. It was that there was a question about which way things should go absent a clear indication.
Your post says that anybody who doesn't want to be put to death when they are disabled should "simply" write up a legal document asking to be kept alive. There are two problems.
One, minor problem, is that sometimes these forms are IGNORED. The argument is that you weren't "competent" to make the decision ahead of time because you didn't know what it really was like.
But that is just a symptom of the bigger problem, which is the lean of society to the idea that some people are better off dead.
See, there is are economic and emotional reasons why someone would be biased toward ending the life of a person who can't protect themselves. The only thing protecting them is laws in the books, OR the general societal bias toward life. Now we've lost the societal bias, it has leaned toward "killing" as the "humane" thing to do. So in fact those who argued for Terri's life were called the mean-spirited ones, while those who called for her death were the compassionate ones.
The law of the United States should be that you only get put to death if you specifically requested it. You should not have to specifically request to be kept alive.
What is the difference between the hospice doctor ordering Roxanol and his patients die and the lone nurse who takes it upon herself to poison her patients and her patients die?
Darned if I know.
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