Friday, April 13, 2012
Sunday, March 27, 2005
"We Love Our Tubes! Disability activists are returning to Pinellas Park FL to tell the simple truths about tubes: feeding tubes, breathing tubes, peeing tubes and other tubes we need and love, to express our ridicule for the pathetic response of the nondisabled majority to these simple pieces of latex rubber. Terri Schiavo's feeding tube is the reason she is being killed." http://www.notdeadyet.org/
"...the life-and-death issues surrounding Terri Schindler-Schiavo are first and foremost disability rights issues -- issues which affect tens of thousands of people with disabilities who, like Ms. Schindler-Schiavo, cannot currently articulate their views and so must rely on others as substitute decision-makers. That’s why 26 national disability rights organizations have adopted a position in support of Terri Schiavo’s right to continue to receive food and water. The evidence that Ms. Schiavo would refuse tube feeding is so unclear and conflicted that it does not satisfy legal standards. The lower court in Florida can pretend otherwise, and the Florida appellate courts can refuse to question the lower court judge, but it serves society poorly to give guardians such an unfettered right to kill."
Saturday, March 26, 2005
What would the fuzzy rule(s) be here? Please see my previous posts, but I would say something like: if the husband considers his wife to be a dead and her body an incommunicative vegetative form not worth bothering with, but the parents consider her to be alive and want to take care of her as they did when she was an infant, then shift care away from the husband and onto the parents. I'm sure others could come up with some good ones as well. Such overarching principles as always erring on the side of life can be applied. These techniques do not require a lot of processing power. You could do the calculations with the processor found in an old video Pong machine unearthed from a landfill and have power to spare.
My point is that it is well within the capability of a human being to take all apects of a situation into consideration in accordance with deep principles, and not be so enamored of following such primitive IF-THEN-ELSE rules as our legal system seems to be so fond of doing. I guess it's a complicated and scary world out there, and it's nice to have simple rules and legal decisions to hold on to. But sometimes you need to apply the full range of your humanity to solving problems. Not as an Asperger's-riddled programmer/judges dealing with thousands of lines of executable code/laws. We know that such people are "made deeply anxious by any change in routine" . We also know that such people are prone to dig in their heels when challenged. They "will become more rigid and stubborn if confronted" . Missing here is a deep, human empathy--such impairment being what characterizes autism spectrum disorders such as Asperger's, which are sometimes referred to as "disorders of empathy." It's good to remember here that these disorders shade into normal and that people who have them can appear to be very high functioning. But I would not argue for removing their ability to "feed"--to economically sustain their own livelihoods-- even for the most severe cases.
Wednesday, March 23, 2005
"Well, nobody got hurt," says Chief Wayne.
"Except those kids who unknowingly ate their own mothers," says Brad.
"Well, they signed the releases," says Chief Wayne.
"Releases or not, Wayne, come on," says Brad.
"They killed people. They tricked people into eating their own mothers."
"I don't know that I'm all that interested in the moral ins and outs of it," says
"It's interesting, that's the thing," says Doris. "The expectations, the reversals, the timeless human emotions."
"Who wouldn't want to watch that?" says Chief Wayne.
This isn't the first time Terri has been starved and dehydrated within inches of her life. What might Terri be feeling, or is she feeling at all? How can anyone say for certain without being in her head? Gail Pursell Elliott wrote in a recent installment of her newsletter, "Food For Thought", about a recent ER episode she saw where the everything that was happening was narrated from the perspective of a patient who was not able to communicate, but retained awareness of what was being done to her. This concept reminded me of a powerful film I saw back in college: "Johnny Got His Gun". In that story, the injuries that prevented any ability to communicate were inflicted by war. According to some of the reviews, the book is even more powerful. I wonder if, similarly to these fictional accounts, Terri is on some level aware of what is going on. Although I didn't vote for the dude, I think what President Bush said today is sound: that we should err on the side of life. There is very little time remaining to do that. The war in this instance is unfortunately one being fought between political opponents and a judicial system that has to protect its power at all costs--while Terri's physiologic systems react to the withholding of water and nutrients that are essential for human life.
Friday, March 18, 2005
The way I look at it is that as far as Terri's husband is concerned, she is already dead. If it were otherwise, we would be talking about premeditated murder. If this is the case, then her lifeless body is of no consequence to him; it is not her; she is gone; why not let her parents take their time in saying goodbye to her, in their own way, especially since to do otherwise is causing distress for them and for so many other people??
Terri has suffered an enormous injury to the very core of her being. When someone is injured thusly, in such a severe manner--I'm sorry I can't suggest references right now, other than some writings from holocaust survivors--the tendency is not to cry out for one's spouse. No, the utter catastrophic character of the injury violently transports a mature adult human being way back in time...past marriage, past youth, to the earliest consciousness of childhood, and threatens even that: "Mommy! Mommy! Help me!", puts to words the terror of a child who is more scared than she ever was during her original childhood and life to this point. The degree of injury is so profound, that it's even pre-verbal, a turning toward her mother, even though her damaged brain can no longer express that terror through facial expression. Terri doesn't need a husband right now; she needs her mom and dad, the people who brought her into this world and loved her as an infant, and to which state she has regressed. Whether that state can ever be progressed from again, is not something I can venture an answer to. I can only say, in view of the fact that her parents very much want to care for her, that to end her life now under force of court order falls short of the dignified death that the court intends, though the elaborate language and procedure of the legal system is engaged here almost as a form of end-of-life ritual. Rather, it is additional trauma to her and to those who believe a living part of her is still inside. It is a ritual culminating in a death chamber not all that dissimilar from the death chamber in capital punishment. After legal process gives way to medical procedure, death takes somewhat longer here than the few minutes from that of lethal injection.
I urge immediate action by the legislative branch on this issue, though the courts will no doubt resist. This is a very time-sensitive issue, dictated by the laws of physiology, laws that supersede those of any court. I am reminded of what Roy Masters used to say on his radio program: "Some people would rather be dead than wrong; what they don't realize is that they're going to be both dead and wrong!" I would add that apparently some would rather that Terri was dead than that they be wrong. I hope that dynamic will not determine the outcome here.