Why doesn't anyone give a crap??

[Progo35]

Disclaimer: I am not ranting at the people HERE. I am Ranting at the people IN SOCIETY who do the same thing to disabled people that society does to gay people, that is, deny them their civil rights and turn their heads when someone in that group is killed for being who they are.

Everytime I look up Terri schiavo on You tube or something, there are people making fun of her in really nasty ways and using her to push agendas. The right wing, may you ask? No, the left. And, when I comment pointing out that this is unbalanced, i get, "you're just a right wing loser who doesn't look at scientific fact, only your faith." I'm paraphrasing, but this really disgusts me. I don't understand why people who support gay rights and racial justice and fighting poverty are OKAY with seeing people like Terri as NON PEOPLE, especially when there was a lot of medical evidence to contradict the position that she was brain dead. Why is that evidence considered bogus but the other is automatically sanctioned? WHY??? CAN ANYONE ANSWER THAT???? WOULD ANYONE HERE DEHYDRATE THEIR PET TO DEATH BECAUSE IT WAS SICK? WHY IS THIS OKAY TO DO TO A HUMAN BEING????? Is it hopeless? Will people who stand up for the profoundly disabled forever be labled as right wing 'fascists???" WHY are disabled people not allowed to be considered "people"?

[Daniel]

Your post reads as a rant. And it's hard for people to respond to rants.

I'm wondering how much your feelings of vulnerabilty - you repeatedly talk about being disabled- are being mixed with matters which are very different in scope.

Empathy is a wonderful thing. However, I think you are jumping to conclusions.

People here, in fact, do 'give a crap', in case you haven't noticed. That said, issues of life and death are complex matters- which intersect with legal matters as well. What we're talking about here is how to deal with suffering. And suffering, either one's own, or another's, can cause all sorts of mayhem to occur. It brings up all sorts of stuff.

To the extent that the Shiavo case brings up your own suffering may be the more important matter.

One more thing.

Scotty the doctor talked in detail about end of life care and how patients do not feel pain in the way you are all upset about. I encourage you to go back and read those posts. And as far as the Shiavo case goes, the case hinged on the wishes of a person who instructed her husband to take care of her in a way which ran counter to her parent's wishes. it was not about the parent's rights. It was about the right of the patient and her husband to make a difficult decision- one in accordance to her wishes Like abortion- another sitcky issue- the matter of one of the rights of the individual, not the rights of those who moralize.

[Progo35]

I'm Sorry, everyone, I meant PEOPLE in SOCIETY, not the people here at SOULFORCE. I have the firmest belief that people here DO CARE, which is why I was venting to the group.

So, my post isn't talking about the people here, I was talking about the people I frequently encounter everytime that particular issue is brought up, esp. at youtube, where people respond to videos on a variety of issues. The people I dialogued with there this morning all felt that what was done to Terri was fine and that it was okay for the comedian in this particular clip to devalue her life in order to make a point about republicans, which was that, according to him, they care more about "brain dead" "vegetables" than they do about living people, like those who died in the Katrina hurricane.
As to my disability...well, I'm not going to be starved or dehydrated or sterilized tomorrow, because luckily for me, I am on par with everyone else in terms of my intelligence. i just learn a little differently. Thus, there's a huge difference between my vulnerability as a learning disabled woman, which simply makes me an easier target for unscrupulous individuals, from whom I am able to defend myself, and Terri, who lacked the ability to communicate or give anything back to "society." What I mean is, I feel that since people like Terri can't talk or give back, society feels that they are just a huge drain and not a big priority, even though more and more of them are being passively "euthanized" as we speak.

Now, this is an issue that I am an expert on, kind of like the individuals who have been at soulforce for a long while or who have dealt with issues surrounding the gay community would have information that I have not been exposed to. So, I am talking about information that is not often broadcast or discussed by the media, by minority groups, etc. I don't feel like the media painted a fair portrait of the issues at hand during the case, or that medical science pays equal attention to evidence that people who are PVS or in a coma are aware of their environment and many recover.

So, I know that I talk a lot about being "disabled", but as you said, this is a totally different issue. If I go to the hospital with a heat attack, the doctors are not going to just let me die because I have a learning problem. But, if I were quadrapelegic and severely brain damaged, well, that would be a different story. As I articulate in my post, everyone in the world seems to agree that we need to intervene to help people in third world countries to keep them from starving/dehydrating to death, among other things. While my post may be a "rant," I would really like to know what people think can be done about this problem.

[BrianB]

I can empathize with you on this one since I'm a paraplegic. Sometimes I wonder if they give disabled people the same quality of care that they give to able-bodied people. It seems like that if you get an injury while being disabled they want to put you in a nursing home indefinetely. Frankly, the quality of life in a nursing home is so poor that I would rather die than be placed in one permanently. OTOH, if there was hope of returning to a life outside of the nursing home; I would endure the lack of freedom and privacy.

[Zerbie]

I can empathize with you on this one since I'm a paraplegic. Sometimes I wonder if they give disabled people the same quality of care that they give to able-bodied people. It seems like that if you get an injury while being disabled they want to put you in a nursing home indefinetely. Frankly, the quality of life in a nursing home is so poor that I would rather die than be placed in one permanently. OTOH, if there was hope of returning to a life outside of the nursing home; I would endure the lack of freedom and privacy.

I think there is a dismissive attitude when people assume without checking that a situation is hopeless. I know someone whose elderly parent was unconscious in a hospital and the docs recommended pulling the plug and letting her die. Her son asked if absolutely everything else had been checked and all options tried yet. They said the only thing they had not checked was her electrolyte balance, but she was probably due to die and he should pull the plug anyway. He had to argue and insist and call for a higher-up and DEMAND they check the electrolyte balance. Finally they did, found things out of balance and administered a fluid. His mother was awake in half an hour. But they had told him he should let her die. They just assumed it was her time, because she was old.

[Steven E. Webster]

Friends,

Here's a wikipedia article on Terry Schiavo:

http://en.wikipedia.org/wiki/Terri_Schiavo#Autopsy_details

I think we can believe strongly in the rights of disabled people while disagreeing about particular cases. I tend to think the courts were right to side with Terry's husband against Terry's other relatives.

I have a living will. My husband or one of my stepdaughters (if Jim is unable) will make the decision whether treatment, food and hydration etc. should continue if I were no longer able to make those kind of decisions. Terry did not have such a document, but courts ruled that her husband properly represented her wishes about treatment. I would not want my relatives to step in and interfere with decisions made by my husband or stepdaughter.

It was interesting that the number of living wills increased after the Schiavo case.

Disagreement over the Schiavo case should not be interpreted as a stance on the genreral issue of equal rights for disabled persons.

Steven Webster

[Progo35]

Steve-
It's a tough issue generally when its only a matter of the husband vs. the parents. the problem here is that Michael Schiavo's conduct indiciated discrpencies in terms of his intentions. For more information on this case, I really encourage everyone to look at the links I've posted on the Hate crime legislation thread.

Personally, I think that DNR has gone to far. DNR was supposed to help patients who were terminally ill and had succumbed to that illness not be repeatedly resusitated again and again. But now, DNR has come to mean "if I can't feed myself, don't feed me." If someone doesn't have a will saying that they want to die like like that, I think that the courts need to air on the side of life. And, as the wikipedia article indicated, there was no way to indefinitely determine that this woman was PVS-which means that she was probably conscious, if not in the same way that you or i would be. Now, if Terri did have a living will saying that, I'd be a different story. But, I really hope that some of you will look at the links I've posted. They are very valuable in adressing these issues

Zerbie-You've hit the nail on the head. This is what I'm talking about-it used to be that doctors did everything possible to save people's lives...now, it seems like the "quality of life" ethic has been twisted to the point that many doctors will encourage family members not to save a loved one's life when they are completely aware that they have not exhausted all options. It's disgusting that anyone has to DEMAND that the doctors check everything before giving up on someone, that is eugenics at its worst. Of course, there are MANY doctors who would NOT do this, ever. But, this philosophy seems to be spreading at an alarming rate.

[Daniel]

Steve-
It's a tough issue generally when its only a matter of the husband vs. the parents. the problem here is that Michael Schiavo's conduct indiciated discrpencies in terms of his intentions. For more information on this case, I really encourage everyone to look at the links I've posted on the Hate crime legislation thread.

I'm sorry Progo, but I don't buy your argument. Why? Because in a court of law, Mr. Schiavo's 'conduct' - that is- your assertion of the same- amounts to inuendo and hearsay- all very nice ways to damn the opposition. It's an emotional argument certainly. And we don't take away the rights of people based on emotional arguments. The truth of the matter is that Mr. Schiavo prevailed in court against such claims, which proved to be false. Inserting this kind of argumentation into the dialogue helps no one.

Personally, I think that DNR has gone to far. DNR was supposed to help patients who were terminally ill and had succumbed to that illness not be repeatedly resusitated again and again. But now, DNR has come to mean "if I can't feed myself, don't feed me." If someone doesn't have a will saying that they want to die like like that, I think that the courts need to air on the side of life. And, as the wikipedia article indicated, there was no way to indefinitely determine that this woman was PVS-which means that she was probably conscious, if not in the same way that you or i would be. Now, if Terri did have a living will saying that, I'd be a different story. But, I really hope that some of you will look at the links I've posted. They are very valuable in adressing these issues.

To be sure, doctors can abuse a patients living will. One the other hand, I have known cases where a living will was ignored and a court had to step in to reinstate it. That said, I think you exaggerate the matter, if only to make your case. To say that Teri Schiavo was 'probably conscious' is pure conjecture on your part. A member of Congress asserted this kind of argument to his discredit.

[Jennifer5]

Progo, I understand what you are saying here... but on the other hand don't you kind of think that if the family or whoever WON'T go to the end of the world to save the one they love... that really they don't love them and if that's the case the person probably would just rather be gone?

I really don't mean to sound insensitive, but can you see at all what I mean?

[scott snedeker]

Will people who stand up for the profoundly disabled forever be labled as right wing 'fascists???" WHY are disabled people not allowed to be considered "people"?

By some absolutely! And that is the greatest form of flattery.

You care passionately. Your youthful passion is the necessary energy to balance out complacency. You are the radical that is needed for change. It is a time-honored role usually played by the young and the driven like yourself.

I believe the change you seek is one of attitude, where every person is seen as a precious representative of the magnificent species, homo sapiens. When attitude changes, then so will action.

Keep going! But what I get from the messages from Daniel and others is to hone your focus so that it doesn't stray off into distracting drama. Keep to you mission!

[Daniel]

Keep going! But what I get from the messages from Daniel and others is to hone your focus so that it doesn't stray off into distracting drama. Keep to you mission!

You say it well: Less drama. More focus. Better results.

[Progo35]

Daniel

Now, I like you. I enjoy your contribution to this forum and you certainly have been here longer than I. So, I hope you won't feel offended by what I'm about to say, but I think that it may come off that way.

A) I am bothered by your assumption that my concern for the rights of severely disabled individuals are emotional contrivances. Have you looked at any of the info that I posted on the hate crimes thread? If so, please say that so I know that you've actually researched the opposite opinion.
B) Scott-I also very much benefit from your contributions esp. when I have asked you about how to address people in terms of these issues. BUT, you have not given any concrete reasons for WHY dehydration isn't painful in itself, only a philosophical argument that this is preferable to being in a severely disabled state where one experiences frequent fevers, urinary track infections, and pnemonia. What I want to know is WHY you can make the statement that this isn't painful. What biological processes take place in the body to prevent this from happening? Thus, in short, Daniel, Scott has not talked at length about dehydration not being painful-he has only juxtaposed two potentially painful situations and articulated his preference for the dehydration.

3) Daniel, if you had read or watched any of the links I posted, or read the book that her parents wrote, you would know that, according to the nurses in her hospital, Michael Schiavo repeatedly said things like, "Is that bitch dead yet?" "She's ruining my whole life" and "I'm going to be rich!" THE NURSES HEARD HIM. There's also evidence to indicate that Terri suffered marital abuse. Why do you so ardently believe the husband's story but completely discount that of her parents and friends?

"Steve-
It's a tough issue generally when its only a matter of the husband vs. the parents. the problem here is that Michael Schiavo's conduct indiciated discrpencies in terms of his intentions. For more information on this case, I really encourage everyone to look at the links I've posted on the Hate crime legislation thread.

I'm sorry Progo, but I don't buy your argument. Why? Because in a court of law, Mr. Schiavo's 'conduct' - that is- your assertion of the same- amounts to inuendo and hearsay- all very nice ways to damn the opposition. It's an emotional argument certainly. And we don't take away the rights of people based on emotional arguments. The truth of the matter is that Mr. Schiavo prevailed in court against such claims, which proved to be false. Inserting this kind of argumentation into the dialogue helps no one. "

4) Above, you assert that being dehydrated to death is what Terri wanted, based on THE WORD OF HER HUSBAND. She had NOTHING IN WRITING that SAID THAT, plus, NURSES SAID that she could show reactions and could make her wishes known. I'm sorry, but I don't think that just being married to someone automatically makes your word "gospel," and I DON"T believe that ANYONE should be dehydrated just because they are brain damaged. I, frankly, don't think that people should be able to choose to have themselves dehydrated when in that state. If I wanted to kill myself, hopefully someone would stop me. So, why would we allow someone who is profoundly disabled to kill himself or herself like that?

6) Jen-No, I don't believe that this is a case of the family not wanting to let go in the cases I've addressed, because I believe that the media refused to present valid scientific evidence indicating the presence of a post-injury will on the part of the people involved, and that the people involved indicated that this was NOT what they wanted. Remember, I'm not talking about cases in which people have terminal cancer or have a machine breathing for them-I'm talking about disabled people who lack the coordination necessary to feed themselves. Personally, I now have what is called a "Will to Life" on my computer that says that under NO circumstances is my food or hydration to be removed, and taht I am to recieve regular therapy, if I sustain a severe injury. So, when you say, "don't you think that this is a case of a family holding on when the person involved would rather be gone?" you are assuming that the person would rather be gone, which isn't the case in many situations. Just because a person can't communicate well doesn't mean that they are always incapable of having an opinion on their care as it progresses.

7) Should the husband or anyone else been allowed to remove Terri's feeding tube, just like one might remove someome from a ventilator that is literally breathing for them? No, because Terri had NOTHING in WRITING saying that those were her wishes. And, because, there are many doctors who will argue that dehydration is painful. And, finally, food and water are a right, not a "life support" measure.

8) It's one thing for the patient to have an articulate will in place. It's quite another for doctors to terminate care and hydration AGAINST A PERSON'S WILL. If your husband were to become ill, would you want the autonomy to make decisions for him or would you want doctors pulling the plug even when you said no? This is what has happened since the Futile Care Law has been enacted. It's difficult for me to understand how one could argue for medical autonomy, even if that involves the person saying that they want to be dehydrated, and then not be absolutely enraged as an American over this violation of people's unalienable rights and personal autonomy. It's like saying that the patient only has rights when he or she wants to die, not when he or she wants to live. Now, of course, we have been talking about Terri Schiavo, not the Futile Care problem, so that is, in a way, a completely different ball of wax. But, I do think that we had better be concerned when things like what happened to Terri are sanctioned AND there's a law allowing doctors to override patient's wishes that no one in the media or government is publicly doing anything about.

I don't see this response as a rant, just a clear statement of the issues involved. I don't feel that my feelings about the situation are blown out of proportion, and, moreover, they wouldn't be so out of proportion if this issue were acknowledged by more of those who fight for justice in our society. To provide a somewhat self-aggrandizing example, it's like the man in Plato's Republic coming out of a cave, seeing the light, and then going back into the cave, only to find that people in there don't believe him and would rather stay in the dark than explore what may be outside their experience.

P.S.-
Hate crime = hurting or killing someone because of who they are
Killing a person because of their being a disabled person, because of them being who they are, thus = hate crime. That argument is perfectly logical, not emotional. Emotional would be if I argued, "Her husband and the doctors who argued for Terri Schiavo's right to die hated her in the same way that the KKK hates black people." That's not what I said. I have made an argument based on the decision making process involved in ending Terri's life. If Terri had been a healthy person, the "right to die" wouldn't have even been an issue.

Life Support = a machine breathing FOR someone who's body no longer exhibits the inclination to breath on its own.

[Progo35]

I do, however, really appreciate everyone's encouragement and input even if we may differ on our opinions on what is to be done in some cases. It's good to have different opinions-as Scott indicated, sometimes they balance each other out.

[Jennifer5]

Jen-No, I don't believe that this is a case of the family not wanting to let go in the cases I've addressed, because I believe that the media refused to present valid scientific evidence indicating the presence of a post-injury will on the part of the people involved, and that the people involved indicated that this was NOT what they wanted. Remember, I'm not talking about cases in which people have terminal cancer or have a machine breathing for them-I'm talking about disabled people who lack the coordination necessary to feed themselves. Personally, I now have what is called a "Will to Life" on my computer that says that under NO circumstances is my food or hydration to be removed, and taht I am to recieve regular therapy, if I sustain a severe injury. So, when you say, "don't you think that this is a case of a family holding on when the person involved would rather be gone?" you are assuming that the person would rather be gone, which isn't the case in many situations. Just because a person can't communicate well doesn't mean that they are always incapable of having an opinion on their care as it progresses.


Progo, What I said was "don't you kind of think that if the family or whoever WON'T go to the end of the world to save the one they love... that really they don't love them and if that's the case the person probably would just rather be gone?" Which is VERY different from what you claimed I said. If you're going against what I said, I'd appreciate it if you'd at least refer to my actual words, not the slaughtered version. Please actually read again what I actually said... then let me know that you think. The point that I'm making, is that if people won't work hard enough to keep the person alive, then the dying person isn't really loved by them, and if they aren't really loved, then what reason is there to live?

[Daniel]

Progo- I'm not offended. But I think you are a wee bit upset that I'm not taking your position.

Listen. I'm sitting on jury duty at the moment. And I've served on 2 other trials. I'm no legal expert, but I've observed how courts work and how judges and juries arrive a decisions. They listen to the evidence and are charged by the judge to keep in mind the law, which he/she instructs them in. Regardless of one's emotion about the case, one must decide the case based on the law and the evidence. That's the final arbiter.

Hearsay is not evidence.

I'm not a fan of Mr. Schiavo., nor his ardent defender. He defended himself in court. His wife's parents had their opportunity to present their case. If they had any compelling information that would have changed the outcome, it would have come out during court proceedings. As it is, the court did not rule in the parent's favor. That's the long and short of it.

Yes. I've looked some of the information you posted, though I have not read the book you mention. I'm not swayed the arguments for the reasons I've stated above.

[Progo35]

I apologize for misquoting you jen...it was meant to be shorthand, and I didn't fully process your intent/point, which is that if someone is not being treated well by a family member, the family member doesn't care enough to do everything possible to keep them allive, that situation is bleak, and would that person rather be gone

I guess my response would be the same...that is an assumption that if their family doesn't love them, the person involved would rather die because of their weakened state..unless you are simply making a point that it is horrible that disabled people are put in that position. Many of the people here have had family abandon them, so I ask, do any of you want to die because of this? But again, that was a big problem on my part that I misquoted you. So, please forgive me there.

Daniel...well, yes, I guess that that does upset me that you don't agree, as, to me, this is a matter akin to a gay person being murdered for being gay...but, then again, how would you expect me to respond? Everyone wants people to agree with their position, it is human nature. But, I'm not upset in terms of being personally offended...and, as I've said, what I am upset about is the automatic attachment of my personal baggage to my concern. I mean, when we talk about the issues that confront the gay community, would you want me to say, to paraphrase, "Daniel, I've noticed that you repeatedly talk about being gay..could it be that your own feelings of vulnerability as a gay individual are leading you to obscure the facts about how gay people are treated?" That is patronizing, it basically reduces the concerns to what feels like a therapy session about why my view of reality is obscured.

[Jennifer5]

I apologize for misquoting you jen...it was meant to be shorthand, and I didn't fully process your intent/point, which is that if someone is not being treated well by a family member, the family member doesn't care enough to do everything possible to keep them allive, that situation is bleak, and would that person rather be gone

I guess my response would be the same...that is an assumption that if their family doesn't love them, the person involved would rather die because of their weakened state..unless you are simply making a point that it is horrible that disabled people are put in that position. Many of the people here have had family abandon them, so I ask, do any of you want to die because of this? But again, that was a big problem on my part that I misquoted you. So, please forgive me there.


The misquote was a mistake and is definately forgiven.


So, here's a question Progo... Since this upsets you so much, what exactly do you intend to do about it? We know that posting here won't really help, we know that saying something to someone on You-Tube won't help. So what are you going to do about it?

[Daniel]

Progo- I'm sorry you feel patronized. That said, I stand by my earlier 'wonderings'. My observation is that you continually make assertions which, for me anyway, obscure the facts at hand. No. I do not see this matter in the way that you do. I do not equate being gay with being disabled- for starters. And I really don't understand how you go about equating your disability with Ms. Schiavo's condition. Though I question why you would do so. But I'm only one man with an opinion. And as for opinions......well...we know how the saying goes.

I will say no more.

[Progo35]

Daniel-I hope that y ou will not "say no more," as your opinion is valued.

Jen- so far for doing something about it, I made a presentation this spring on people with disabilities and the Nazi euthanasia program during the holocaust. During the course of this research I learned about the most recent Futile Care Case in Texas, which I have also posted info on. I filed a complaint with the Texas Board of Health and Human Services because of the doctors' attempt to deny medical care to a terminally ill child, which, by definition, is child abuse. I called the ACLU, NOW, PUSH, several news channels, and got up a one hundred signature petition and sent it to the mother's lawyer.

Since then, I have written open letters adressing the Futile Care problem, which I hand out in public places whenever I am able and have posted on as many telephone polls as possible. I am in the process of writing letters that I plan to send to government leaders, universities, the media, etc. I am going to call these efforts "SAFE" Students and Citizens against Futile Ethics, for which I am currently designing a website. And, I do expend a lot of "emotional energy" researching the problem so that what I say in my letters is as accurate and objective as possible.

Just in general, to everyone, I deal with a lot in terms of my disability but not quite the same things. Yes, I did have people tell me and my family that I was not a person growing up. But, I never believed that, it's just a big aggravation to have to deal with. Right now, in terms of being learning disabled, I am very upset by the recent revisions done to IDEA, the Individuals with Disabilities Education Act, which basically has said that it is okay to place children with disabilities in a "seperate but equal" (an actual quote) education. It is too late at night for me to into the examples of prejudice that have gone into the revisions of this act. So, to highlight the absurdity of the situation: when I'm done writing letters about people being euthanized without their or their family's consent, I'll write letters about denying children with disabilities an equal education.

[Jennifer5]

Now I really respect you... I'm glad to see that this isn't just a rant, because that is what most people do. You actually care enough to do something about it, which is wonderful. All you do to fight for equal rights for those with disablities is wonderful! Thank you for doing that! :love:

It sounded like someone just going off on just another issue that they'll forget about quickly... like listening to someone go into a rage about Bush and forgetting an hour later. All I was trying to state with my original comment was that SOMETIMES, the person really would rather just die, but certainly not always or not ever very often.:love:

[NathanATX]

I'm moving this to "National and World News/Issues."

Nate

[BrianB]

Progo35 said:
Just in general, to everyone, I deal with a lot in terms of my disability but not quite the same things. Yes, I did have people tell me and my family that I was not a person growing up. But, I never believed that, it's just a big aggravation to have to deal with. Right now, in terms of being learning disabled, I am very upset by the recent revisions done to IDEA, the Individuals with Disabilities Education Act, which basically has said that it is okay to place children with disabilities in a "seperate but equal" (an actual quote) education. It is too late at night for me to into the examples of prejudice that have gone into the revisions of this act. So, to highlight the absurdity of the situation: when I'm done writing letters about people being euthanized without their or their family's consent, I'll write letters about denying children with disabilities an equal education.

This IDEA really stinks! Without mainstreaming I would not have received a very good education. How can they do this? I would like to help oppose this. Is it just about writing to congressman? I would like to know how to help oppose IDEA.

[Progo35]

Thanks, Jen, I really appreciate that.

Daniel-I'm NOT comparing my disability to Ms. Schiavo's, which is what I've tried to emphasize in my last few posts. Clearly, the two are not nearly the same thing. Nevertheless, you don't have to have AIDS to be concerned about AIDS. There are different disabilities just like there are different sexual orientations. So, I think its important that that is clear in terms of what I'm saying. A comparison between her and I would be totally ludicrous. But, as a responsible citizen, I cannot conscience what I saw as an observer to the Schiavo case.

The only relevant comparisons are that a) Ms. Schiavo and I are both people, b) Ms. Schiavo and I are both disabled in some way, although not in ways that would be comparable in the same way that one could compare someone with dyslexia to myself, and c) I have experienced abuse from people because of my disability, but as I've said, no one has successfully denied me food and water out of "compassion." Some people SAID that they would like to do so, or shoot me, or run me into a brick wall, or... but what is happening to Terri is far more dangerous because the people involved did this "in her best interest," whereas the people who harassed me did it because they were evil in the most classic Garden of Eden sense of the word.

[Progo35]

Brian-I would love to have your help on this. I will try to get you some info on it right away via pm.

Thanks Nate, I really appreciate the move!

[scott snedeker]

Scott- What I want to know is WHY you can make the statement that this isn't painful.

What biological processes take place in the body to prevent this from happening?

The answer to the first question is that I have admitted and frequently still do admit patients who are severely dehydrated, some beyond my capability to rescue. In each evaluation, I perform a complete review of symptoms as a standard history of present illness. Pain is always asked. Never is there a response that "yes I hurt here or It hurts all over" that is attributable to the dehydration. Not even in patients with muscle breakdown, a condition called rhabdomyolysis.

Most severely deyhdrated patients are infact unaware that they are dehydrated or of how mortally ill they are. For this reason I must rely on laboratory testing and not symptoms to avoid missing the diagnosis.

You second question is a very logical one. The mechanism for regulating hydration and water balance is contained in a tiny stalk-like structure in the brain called the hypothalmus. The response of the hypothalmus to low volume, low free water content of the serum is to secrete a substance called antidiuretic hormone or ADH. The symptom ADH produces is thirst and dry mouth. It causes no pain or any other symptom.

Patients with a disorder of excessive ADH secretion drink water constantly and frequently overwhelm their kidneys' ability to compensate. This results in dilution of electrolytes with symptoms of weakness and altered consciousnes in extreme cases. Pain however, is not a presenting symptom of this disorder which feels like extreme superphysiologic dehydration to the patient.

As a human's metabolic processes slow toward mortality the central nervous system function wans. Vigorous metabolism is necessary for maintaining the eletrical potential across nerve cell membranes. This is necessary for nerve impulse conduction. Fatiguing of this type then results in dimished sensory nerve activity. Even thirst is not experience at a point in severe dehydration due to the inability to maintain this electrical potential across nerve cell membranes, long before the moment of mortality.

Dehydration is indeed a painless death, but that does not release medicaid and state governments from accountability for severely disabled humans.

Focus on accountability. Avoid postures that threaten to compromise your credibility. Your mission is too valuable!

[u-dog]

Proga,

About 9 years ago My Dad, who was suffering from advanced Parkinsons became unable to swallow. When asked, he affirmed his earlier decision not to accept a feeding tube. He was completely aware that this meant that he would starve to death. We wanted to continue to hydrate him, but his doctor and the Hospice nurse advised strongly against it saying that it would only prolong his suffering and make it worse. In consultation with Dad we agreed that we would not hydrate him intervenously.

It took my father about 6 days to die. It was a VERY peaceful and pain-free death. For the first 3-4 days we talked and sang and prayed and read with him. For the last 3 days we realized that we had become a distraction from the work he had to do and we simply sat with him in silence.

He was lucid until the last 2 days and understood totally that he could change his mind at any time and we would begin hydrating him or even have the feeding tube inserted if he desired it. He was adamant throughout that he did not wish it.

I can say with absolute certainty that my Father was in no pain and that when the hunger pains subsided around day 2, he was very comfortable.

It remains one of the sweetest weeks of my life. I believe that it was so for him as well... surrounded by the people who loved him most.

My mothers death 3 years later was a similar experience though she did not require a feeding tube and didn't die from dehydration. I no longer fear dying. I've seen it done well and with a little help from my friends I am confident that I can do it well too.

Dave

[Jennifer5]

My mothers death 3 years later was a similar experience though she did not require a feeding tube and didn't die from dehydration. I no longer fear dying. I've seen it done well and with a little help from my friends I am confident that I can do it well too.

Dave

I'm sorry... I can't help it...

xeolpOB-12A

[revtj]

Progo,

I just want to share an experience with you which I had last summer teaching a course on community building and non-violence at the Progressive Summit (http://www.gps2006.org/contact/index.cfm?Fuseaction=Progressive_Sum&section=contact) in Atlanta. A woman in a wheelchair who exhibited some cognitive (mostly speech) and physical limitations sat through our presentation, and at the end asked a very similar question to the one you asked in opening this thread.

I admit, I was not prepared for it. She felt that political progressives & progressive people of faith, because of a mostly pro-choice stance, were doing violence to handicapped people.

When our workshop detailed the extermination gays experienced along with Jews and others in the Nazi holocaust, she pointed out that disabled people were also exterminated by the Nazis but that it is rarely pointed out in documentaries and historical reviews.

On the point of a woman having the legal right to choose to abort a child diagnosed with an in-utero disability, I just have to back up and say I am not comfortable with this and I am very glad people with disabilities are raising this objection to pro-choice voters and pro-choice people of faith. We need to think about this issue and realize nothing is ever 100%. This issue gets very uncomfortable for me as a gay man because it represents something I have a moral objection to, but not something that is ever likely to directly affect my personal life. Yet this one woman opened up a whole new way of seeing for me!

As for being left out of history for abuse, discrimination and hate crimes, I admit to lack of education on this issue. There is a subjugated history of differently-abled people that must be rescued and told as LGBT people, women, and people of color have done...

I do not believe this conversation has been had as often and as readily as it needs to happen. I feel that unintentionally we have left out a voice and that we need to change that and integrate the voices of differently-abled people into a universal understanding of human rights.

We need to raise up leaders who have focused on this and who can educate us. My prayer would be that you continue to be one of those people and that more voices will be heard in the immediate future.

Please tell me more about what you think could be done to educate and legislate around this issue.

[RedneckDyke]

The thing that bothered me about the situation is that they took the raw wound of a fighting, tortured family and put it on the news for everybody to see and make political hay with. This should never have been on the airwaves. It was a private matter between the family.

[tymejumper]

[QUOTE=Progo35;35821]Steve-


Personally, I think that DNR has gone to far. DNR was supposed to help patients who were terminally ill and had succumbed to that illness not be repeatedly resusitated again and again. But now, DNR has come to mean "if I can't feed myself, don't feed me."




Herer is something I know a bit about. I am an Occupational Terapist and work in geriatrics. The DNR or Do Not Resitate order is something that a person willingly and knowingly fills out when they enter our nursing home facility. There is a section that asks if they would like to withhold tube feedings, CPR other life prolonging measures. A person fills this out and marks what he or she would like done in the case they are unable to say for themselves. It protects everyone involved.

I have seen many cases where a DNR order was not filled out and a person has a massive stroke. They can no longer feed themselves, they have to wait to be turned over or to have even an arm moved, they have to sit in their own feces and urine until someone figures out they are in need of a clean undergarment. They often come to us afterwards with a feeding tube installed in their stomach. These tubes often leak and get raw and infected due to the stomach acid that gets on their skin. They get pulled out by the patient themselves when they have contractures and get the tube caught in their hand or arm or anywhere else, they bleed when they get pulled forcefully out. Then there is the Aspiration Pneumonia that plauges people when they are bed bound, even with the best care and the patient to sit up and get out of bed, the risk of inhaling their food is greatly increased as they can't control their swallow and gag reflex. Also, there are bed sores, I know people say you can prevent them, but you can move a person around every half hour and change postions and they still can get them. Then you have to continue range of motion exercises, you have to pull on their joints to keep them moving or they will "freeze" and the only way to fix them is surgery, where they actually chisel the joint appart to get it to move freely. The muscles calcify and the ligamnets shrink. It is very painfull to the person to be ranged, if the can make noise, they cry out and sob. Even with Vicodin or Morphine they cry and moan. How about being locked inside a body that does not move and your dependant on others? The dignity issues involved are numerous.

Now, I am not suggesting that a person that suffers a severe stroke,or is terribly disabled should be ignored or killed or anything like that. But I have seen the horrible side that the Terri Shivo case did not show the regular public. They have NO way of knowing how it is or what she went through.
To the untrained eye it did look like Terri was having interactions with her parents, etc. However, they were reflexes and upon her autopsy, the fact her brain was mush became apparent. There was no way that ANYONE except God himself, if you believe in him, could have helped her. This was merely a case of her parents not moving on and I believe torturing Terri through their own pain and guilt. Terri wanted to not be like that and I respect those wishes.

Diabled people are to me no different that "abled" people. There are a thousand ways to get things done and if you have a different body or way to be independant, who is to say it's wrong? I don't judge people by the way they look, but by the way they are as humans.

I do agree that often people do treat disabled people like less than human, and what if your gay to boot? They are not seen as sexual beings usually. I think sometimes others are afraid of what they do not understand or afraid to upset or offend people in wheelchairs or who are retarded or the parents of terribly disabled kids and are reluctant to ask questions. Would it not be so much better to spread education and freely answer questions?

Education is the key!

Peace Out,
Rebekah

[revtj]

Education is the key!

It sure is. Technology surpassed culture about 25 years ago.

As a chaplain who deals with withdrawal of care regularly I have a question for everyone who has posted on this thread.

DO YOU HAVE A LIVING WILL?

And a few more to follow up...Do you know what your state's guidelines are on withdrawal of care (brain death? 1, 2 or more physicians verifying? etc.) 'Vegetative state' can be legally defined slightly differently in medical jargon in some states and it could matter in your case. If you don't like your state's guidelines you can state your objections in a living will and healthcare power of attorney.

Do you have a healthcare power of attorney?

Do your loved ones and significant others know how/where to locate these documents?

Do your loved ones/family/significant others, as well as close friends, know your thoughts and feelings about what you would want if you were in a vegetative state? This means you have had a discussion with them specifically telling them your wishes no matter how much or little the length of extreme measures you desire.

If you're having trouble answering any of these questions, I beg you to do all of these things. ASAP!

WHY? Because then those who love you and the medical team who gives you care do not have to go through the agony of trying to decide what is right to do...there is a wide swath of grey area here because of technology.

WHY? Because the medical team will almost certainly take every available measure to prolong your life even in a vegetative state unless they have legal authority to do otherwise.

WHY? Because your family and loved ones will be so torn up they will not know what to do, and making such a decision in the midst of trauma and emotional stress is unfair to them.

Nearly every state has agreed that advanced directives are legally binding with regard to resuscitation, nutrition, and hydration. You have the right to call your own shots only if you've stated your wishes in legal documents. It is the only way your voice can be a part of the conversation at such a time and it is the only way healthcare professionals know how to advocate for you if you can't speak.

You can download both documents from the internet for free. You can also augment the documents to state explicitly what your wishes are -- just make sure it is witnessed properly and made known to key people in your life.

[Jennifer5]

The thing that bothered me about the situation is that they took the raw wound of a fighting, tortured family and put it on the news for everybody to see and make political hay with. This should never have been on the airwaves. It was a private matter between the family.
I agree with you on this 100%

This is NONE of our business.... just when a family has it hard enough, you really think that they need the public eye watching them on top of everything?

When certain situations come up, it no longer matters what anyone else thinks... the decision is NOT yours and you need to stay out of it and respect those boundaries.

[u-dog]

I agree with you on this 100%

This is NONE of our business.... just when a family has it hard enough, you really think that they need the public eye watching them on top of everything?

When certain situations come up, it no longer matters what anyone else thinks... the decision is NOT yours and you need to stay out of it and respect those boundaries.


Jenn! You are just NOT OLD ENOUGH to be this smart!! stop it! start acting your age! Do something dumb for a change. ;)

[Jennifer5]

Jenn! You are just NOT OLD ENOUGH to be this smart!! stop it! start acting your age! Do something dumb for a change. ;)

:love:

Don't worry... apparently writing kind of works for me... I act like an idiot out in the real world. I'm doing swimming lessons with a bunch of friends and I told the teacher that he really shouldn't be expecting me to be good at all these things because after all I'm really only four.... so he needed to stop teasing. (of course, he didn't listen though, so I just splashed him in the face.)

[Progo35]

Guys...

I am smack in the middle of an EXTREMELY intense opera workshop that requires 95 percent of my time. I am looking forward to posting more in response to this very edifying discussion as soon as I am able to give committed attention to it again.

please pray for me as I prepare my opera scenes. I love this workshop!

[Progo35]

I was thinking about it tonight:

a) Yes, it is normal for people who have entered the dying process to stop needing food and water-they just don't want it. But, this does not compare to Terri Schiavo's situation. Terri was not dying, she was brain damaged...in contrast to six days, she took thirteen days to die. Her tongue was PEELING by the time she finally succumbed. From reading the Widipedia article Steven W. posted, my understanding is that the autopsy was inconclusive and only performed by doctors who were chosen by Mr. Schiavo, who already agreed with his point of view. This indicates a bias that is very apparent, just like the bias of Bush's nominee for Surgeon General is obvious to many people on this forum.

b) As Scott mentioned, murder is murder, of course. If someone broke into my home and murdered me via lethal injection and I died while unconscious...it would still be a heinous act punishable by a life prison sentence or death. UNLESS, of course, this individual were able to make the argument that my oft-articulated comment, "I want to die," or "kill me now," was meant to be taken seriously (it's not) and that I WANTED to die. I firmly believe that the news media would present the story as the following: DIARY DISCLOSES YOUNG WOMAN'S WISH TO DIE, and that this would be debated across the country and in court, and that this individual would get manslaughter. That is what I'm talking about...twisting things to fit a certain agenda, which I feel the pro choice lobby has done in digusting ways when it comes to disabled people.


c) Now, I have a serious question, Scott: Let's say that as an experiment, I decided to stop eating and drinking. Would I, as a fully functioning human being, notice this? Because, I know when I am dehydrated: my mouth gets dry, I get a headache and I get nauseous. But, are you saying that my nervous system wouldn't register the discomfort signals? Or, are you saying that only people who ARE DYING wouldn't feel discomfort signals? If I were moderately brain damaged but my body was still working, wouldn't I feel the same thing but just not be able to articulate it?

[scott snedeker]

I was thinking about it tonight:
c) Now, I have a serious question, Scott: Let's say that as an experiment, I decided to stop eating and drinking. Would I, as a fully functioning human being, notice this? Because, I know when I am dehydrated: my mouth gets dry, I get a headache and I get nauseous. But, are you saying that my nervous system wouldn't register the discomfort signals? Or, are you saying that only people who ARE DYING wouldn't feel discomfort signals? If I were moderately brain damaged but my body was still working, wouldn't I feel the same thing but just not be able to articulate it?

I will answer first with quoting from my first paragraph.

I have admitted and frequently still do admit patients who are severely dehydrated, some beyond my capability to rescue. In each evaluation, I perform a complete review of symptoms as a standard history of present illness. Pain is always asked. Never is there a response that "yes I hurt here or It hurts all over" that is attributable to the dehydration.

I agree that dehydration may not be a symptomless death in a physically healthy and sensate person at the beginning of the process, But would be less symptomatic as the dehydration progressed beyond the point I explained earlier.

As I have mentioned in other posts, this is an imperfect solution to a dilemna. It may not be symptomless but it is not unbearably painful.

I say this after having witnessed death in hundreds of people where typically there are no sings of distress by allowing death to occur this way. In a patient in whom a careful decision has been made to cease atrificial sustainment and resecuitation, the common practice which I also follow is to administer morphine as a continuous drip or as needed in small doses for signs of distress. The dose is deliberately made to be significantly less than that which is lethal. That would be active euthanasia.

Active euthanasia would indeed be symptomless. A practice of active euthanasia, however, is far beyond the capability of our society's evolution in my opinion. We are as a nation far too primitive in our sensibilty. And as I have agreed before, nor do I believe eugenics to be defendable either.

The only situation where I could fathom where eugenics would be applicable would be if the supply of resources became so desperately low that not enough was available for everyone to survive.

A form of this is practiced with organ transplants. Only the most desperate patients receive a transplant andhe/she must demonstrate the ability to meticulously toe the line and not have another illness likely to cause death. In this field the organ is more valuable than some patients. And yes the decision is made that allow some to die so that another might live. In the last 3 months I have had to tell three liver failure patients that they are not candidates for transplantation (active alcoholism disqualifies them for 6 months) and that I did not expect the to survive very long. I know two of them have died already. I don't think the other one is alive either.

I never feel so powerless and inadequate as I do in this circumstance. To practice eugenics unnecessarily would be appalling. I would rather empty septic tanks with my bare hands than to decide futile care against a patient or family's wish!

[Steven E. Webster]

I was thinking about it tonight:
From reading the Widipedia article Steven W. posted, my understanding is that the autopsy was inconclusive and only performed by doctors who were chosen by Mr. Schiavo, who already agreed with his point of view.

Progo,
Where do you get this? When I look at the Wiki article I see that the autopsy was performed by a man who holds the title "Chief Medical Examiner" and who issued an autopsy report that was an official government document. I don't think this man got to be "Chief Medical Examiner" by Schiavo's appointment.

Where do you get the idea that the man performing the autopsy "already agreed with [Mr Schiavo's] point of view"?

Progo, I can agree with your general concern for the rights of the disabled--but harping on this Schiavo case weakens your credibility. Reasonable people looking at information like that in the Wikipedia article are just not all going to agree with you that Terri Schiavo suffered injustice when her husband legally carried out her wishes to end her medical treatment. Most reasonable people are likely to disagree with you on the Sciavo case.

Remember, the Schiavo case was one of the things that seriously damaged the credibility of the Republican congress before the public when they decided to butt in. Where are Tom Delay and Bill Frist now?

The Schiavo case has nothing to do with injustice towards disabled persons, unless it might be an example of people trying to impose their own wishes in place of a disabled Terri Schiavo's wishes.

Steven Webster

[tdogg]

The thing that bothered me about the situation is that they took the raw wound of a fighting, tortured family and put it on the news for everybody to see and make political hay with. This should never have been on the airwaves. It was a private matter between the family.

Totally agree with you on this!

In regards to the Shiavo case, I wasn't there, don't personally know anyone involved, and while I did have mixed feelings (due to various media reports, which is all I had access to), did NOT have sufficient information to make any personal judments on the case. Daniel said it best - this was decided in a court of law where all parties had the opportunity to present their arugment and the FACTS (facts not heresay). The decision was based on the facts presented. We can only rely on the courts ability to hear the arguments, separate out the facts and make a reasonable decision based on the facts.

Progo, I agree with Steven on this. When you leave out the Shiavo argument, words ring true, rational and convincing. I would move forward without reiterating that particuclar case. I think you could have some major influence on the rights of the disabled, keep it reasonable and rational, and press on. You go girl! :D:love:

[scott snedeker]

Progo,
Where do you get this? When I look at the Wiki article I see that the autopsy was performed by a man who holds the title "Chief Medical Examiner" and who issued an autopsy report that was an official government document. I don't think this man got to be "Chief Medical Examiner" by Schiavo's appointment.

Here is the report directly patched from wikipedia:

["The neuropathologic changes in her brain were precisely of the type seen in patients who enter a PVS following cardiac arrest. Throughout the cerebral cortex, the large pyramidal neurons that comprise some 70% of cortical cells—critical to the functioning of the cortex—were completely lost."]

Without Cerebral cortex there is no thought or awareness. No tissue capable of thought was present.

Every colleague of mine and I agree with this decision. Use this as an example and you will have virtually every physician as your adversary. You will have nearly zero credibility and practically no allies from the medical community. You will almost certainly sabotage your cause rather than promote it.

I agree with your cause. I want to see the rights of disabled become a forefront of social consciousness. You are the spearhead for change in this very undeveloped aspect of social evolution. Personally I want to see you fulfill your mission.

I urge you to abandon a self-defeating posture. Passion for a cause can be vulnerable to crushing opposition. I myself am too old and worn from my own battles from my day to have such passion any more. Keep yours going and cultivated

[Zerbie]

H I myself am too old and worn from my own battles from my day to have such passion any more. Keep yours going and cultivated

It saddens me to hear you describe yourself as old and worn. :(:love: You are not old! Aren't you only in your 40s?

You can renew and restore your energy. You have determination to create positive surroundings, so simply include resting and rejuvenation in your healing. Please don't give in to being battle worn. :love: Energy comes back.

:pray:

[Progo35]

Hey, guys,

Well, I don't think that we're going to agree about the Schiavo case. The only further comment that I do want to make is that I think that the Republican congress did the right thing. But since we've talked about that, it isn't necessary for me to continue bringing it up and talking about this particular issue, particularly where the issue of doctors, rather than families, making decisions is concerned. As horrible as what I feel Mr. Schiavo did, that is another ballgame, if in the same world series.

Scott, I especially appreciate your contributions in terms of these discussions and also believe that you would never care out a futile care decision against a family's wishes. So, I'm aware that if you and the other people here disagree about the Schiavo case, it doesn't mean that you don't agree about the futile care issue or other issues.

Right now a case that is bothering me concerns something that happened during Katriina: a doctor and some nurses euthanized elderly people instead of evacuating them. They weren't dying, they just had DNR orders IN THE CASE OF A SEVERE ILLNESS or NATURAL death. Already, the DA in New Orleans has dropped charges against three of the people involved. I feel upset and powerless as a citizen...people should be loudly protesting this, and I just have a ton of stuff in my life right now and balancing that mission with doing other things that are important to me can be hard. Obviously, I, myself, cannot fix these problems, but I would like to do something more...while still practicing music and maintaining my GPA. I worry about when to make sacrifices and when to make sure that I am continuing a course that is going to make me happy in life later on...and so that really worries me sometimes.

[scott snedeker]

It saddens me to hear you describe yourself as old and worn. :(:love: You are not old! Aren't you only in your 40s?

You can renew and restore your energy. You have determination to create positive surroundings, so simply include resting and rejuvenation in your healing. Please don't give in to being battle worn. :love: Energy comes back.

:pray:

I'm actually 39 years and 49 months:D


But it ain't the years. It's the mileage:lol:

Kidding aside I have had to find a new method to live with what I don't like in the world. Instead of direct oposition to what I don't like, I focus on creating what I do like. It's much more effective and creative and it takes less effort. In the final balance I think more is gained by my newly adopted approach.

[scott snedeker]

Hey, guys,
Obviously, I, myself, cannot fix these problems, but I would like to do something more...while still practicing music and maintaining my GPA. I worry about when to make sacrifices and when to make sure that I am continuing a course that is going to make me happy in life later on...and so that really worries me sometimes.


The best way to help others is to maintain yourself first. This is a right to which you are entitled regardless of how desperate another may be. Preserve yourself so that you can continue giving in the long run.

Metaphorically, you would not take all of the honey from a beehive at once. The hive would starve and die. But a little at a time could be extracted for years without harming the hive, because you would allow the bees to replenish faster than you depleted their supply.:love:

[Progo35]

Brian B:

I wanted to address your desire for more info about IDEA. This is IDEA's website:

http://idea.ed.gov/explore/view/p/%2Croot%2Cdynamic%2CQaCorner%2C7%2C

The primary problems I see with the act are the "special circumstances" allowance that give WAY too much leeway to administrators in determining "an alternate placement" for special needs children who "deviate from the school code of conduct" (which, frankly, could include not paying attention to killing someone), and the Act's implications regarding special needs students. For instance, one of the first questions addressed on the website is, "what if a student rapes someone during a school function," which is, in fact, an extremely far flung possibility and is more likely to be committed AGAINST an Learning disabled or disabled child than BY such a student. Also, I am trying to reconnect with a list serve I used to be part of, where parents have detailed horror stories of their children being removed from class FOR DEFENDING themselves FROM AN ATTACK by a NONDISABLED student. Like, for instance, student B tells student C that he wishes that she were dead and that if he could, he would run her into a brick wall. Student C calls student B an a*****. This exchange happens often, and other students join in. Ultimately, Student C is disciplined for using the ah word by being removed from the bus, or the class, or whatever: it's just easier for school administrators to remove one student by using this loophole as an excuse than force fifteen students to act respectfully towards their fellow human beings. It's human nature.

[Zerbie]

I'm actually 39 years and 49 months:D


But it ain't the years. It's the mileage:lol:

I get it about mileage. Really I do, I was probably the world's most decrepit kindergarten student.

But I wish you wouldn't give me math problems. . . .:p


Kidding aside I have had to find a new method to live with what I don't like in the world. Instead of direct oposition to what I don't like, I focus on creating what I do like. It's much more effective and creative and it takes less effort. In the final balance I think more is gained by my newly adopted approach.

Well the crucial thing is that you are doing this! You are going to experience a resurgence of energy from all the positive life choices you are making. If you focused on directly opposing what you don't like you would just deplete yourself while getting more immersed in negativity.

We now return to our regularly scheduled thread topic. . . .

[tdogg]

Interesting experience with a DNR issue. Back in April my father, who is a stroke victim in a wheelchair with very little ability to communicate effectively, fell in his wheelchair. He was checked out by the local ER, released to go home without a brain scan, and later that night had a major seizure due to bleeding on the brain. He was in ER (two different hospitals) for nearly 30 hours before being admitted to ICU. The doctors/nurses encouraged my mom to sign a directive for DNR/DIR, which she did.

The following day my dad was rapidly recovering from an iffy couple of days. What we found was that other than basic life care, hospital personnel wasn't too interested in my dad's needs such as water or food. After about 3 days he was getting pretty hungry and no longer being fed IV, so after much discussion amongst close family members (my stepmom, me and my sisters) my mom decided to destroy the directive. Shortly after, amazingly lunch was served and my father was better taken care of.

This experience has kinda given me a different outlook on DNR/DIR directives and made me think twice about what I might want to do for myself in that area.

[Progo35]

It is stories like this that keep me up at night. THis is what I'm talking about. It's like there's this sick ethic of encouraging people to die when they get old or disabled. It's disgusting.

What I have learned in my research has caused me to think more about what I'd want as well. I used to think that I would include a DNR order to be applied IF I WERE IN THE FINAL STAGES OF DYING, like if I had cancer or something. I trusted doctors to make the distinction between that and, say, a stroke. But, now I have a directive that says that under no circumstaces is a DNR to be instituted and that if the doctor does this, I encourage his or her prosecution to the fullest extent of the law.

[tymejumper]

Interesting experience with a DNR issue. Back in April my father, who is a stroke victim in a wheelchair with very little ability to communicate effectively, fell in his wheelchair. He was checked out by the local ER, released to go home without a brain scan, and later that night had a major seizure due to bleeding on the brain. He was in ER (two different hospitals) for nearly 30 hours before being admitted to ICU. The doctors/nurses encouraged my mom to sign a directive for DNR/DIR, which she did.

The following day my dad was rapidly recovering from an iffy couple of days. What we found was that other than basic life care, hospital personnel wasn't too interested in my dad's needs such as water or food. After about 3 days he was getting pretty hungry and no longer being fed IV, so after much discussion amongst close family members (my stepmom, me and my sisters) my mom decided to destroy the directive. Shortly after, amazingly lunch was served and my father was better taken care of.

This experience has kinda given me a different outlook on DNR/DIR directives and made me think twice about what I might want to do for myself in that area.




That is the one of most horrible stories I have heard! As a medical worker, it bothers me that persons would use a DNR as an excuse to not take care of someone. I know at our facility, the person is cared for as well as a person without a DNR. I think it is stories like this one that cause people to misunderstand that if they have a DNR, someone will let them die. It turns my stomach that another professional would alow the presence of a DNR to direct the standard of health care.

The second I become that unfeeling about my job and about other humans, that is the second I need to hang up my degree and become an accountant!

[scott snedeker]

....... stories like this one that cause people to misunderstand that if they have a DNR, someone will let them die. It turns my stomach that another professional would alow the presence of a DNR to direct the standard of health care.

The second I become that unfeeling about my job and about other humans, that is the second I need to hang up my degree and become an accountant!

Me too! Unfortunately the collateral trama that health care professionals suffer does sometimes cause us to no longer "keep it real."

This burnout is common because many of us are drawn to the field because we are people pleasers, codependents who compensate for a low self esteem with approval from others.

The problem is that we often don't win and patients die despite our efforts. Then we feel worthless, used, resentful, and empty day after day after day. So many of us withdraw and pretend it's not real, get cynical, don't dare to put our feelings in to our job because of the risk to our worthiness.

I was approaching this point myself in January of this year. I kept up my standards for ethical reasons but my heart and passion had long left medicine. This made every day emotionally excruciating. That's when I announced that I was closing my office, and resigning from office practice medicine.

The story has a happy ending however. It was after I resigned that I attended a spiritual gathering that allowed me to "euthanize" my previous self-injuring, self defeating identity and transform into a new spiritual outlook.

I learned that I had to fix me first before I could go on.

I took a new position as a "hospitalist" and I absolutely love medicine again. The difference now is that with my new spiritual identity I have great self-esteem independent of any outside support. I no longer seek to help or please people to compensate for a personal sense of inadequacy.

Oddly, as a result, I now give better medical care than I have ever before! Whoda Thunk it could happen this way!

If someone is in the same point that I was........resign..... and "physician, heal thyself!"

[Progo35]

http://www.alertuk.org/node/77

http://www.pregnantpause.org/euth/target.htm


I encourage everyone to read these articles when they are able. Obviously, these are from organizations that support various things that people here may or may not agree with, but they are reporting factual accounts/cases that are little known in our soceity.

[scott snedeker]

These articles, if accurately portrayed, are abominations of medical ethics and medical practice. The lady in the nursing home did not meet any criteria for with holding food and water by any ethical standard. Clearly decision makers were incompetent or just plain lacking in any form of accountability in their charcter and should be yanked out of decision-making roles.

The erroneous perception, however, is that onlookers are powerless to overturn decisions. They are not if they know what to do. In the case of the infant a court order can be obtained in 30 minutes to make they infant a ward of the state and a Guardian appointed. The parents are police escorted out of the hospital and the new guardian then makes medical decisions. This is routinely done for abused children and children of Jehovah's witnesses who refuse life-saving blood transfusions for theri minor children. If the jehovah's witness parent attempts to intervene then they are arrested and held without bond until a hearing.

A call to the state licensing board can intervene for the case of the starved but alert elderly woman in the nursing home. This supercedes the judge's decision and a moratorium on the do not feed order initiated until the appeal can be filed. I guarantee you no state licensing board would side with the judge, nursing home or any other involved in the decision

In the case of hypernatermia, if the son knew, he could fire the physician off the case and call 911 for ambulance transport to the nearest emergency room.

The temptation is to stop all dnr decision and withdrawal of support decisions because of the possibility of circumstances like these. But that would be too one-sided. That would be like saying that no cesaerean sections should be done because of complications encountered.

In every field you will find adept people and ethical people but you willl also find incompetent people and unethical people. The fear I sense rising from these articles is of the loss of autonomy. A Google search of patient's rights in a situation might connect someone in one of these situations with the information he/she needs to overturn a decision that doesn't seem ethical.

[Progo35]

The problem, Scott, is that in both cases, motions were filed by the families. Only, in the first article, it was the brother ordering that his sister be starved even though the hospital didn't want to do it...but then did it anyway, even though the guardian for this woman in 1995 protested vehemently and tried to have her food reinstated. Then, the second family of the woman in the UK GOT a court order demanding that food and fluids be provided, only to have it ammended and disregarded.

Hopefully, the more people that know about such cases, the more likely things will start to change.

[RedneckDyke]

from what I have have read, the patients in new orleans that the doctors and nurses killed could not be evacuated. I could be wrong, but from what I understand, if they had not killed them, then they would have suffered by either drowning or suffocating when the power went out and they lost the vents. I could be wrong

[Progo35]

Red-

I would sincerely like to know where you read this. I have been unable to find any updates about what has happened with the case since two nurses were acquitted in exchange for their testimony. I heard that the doctor who ordered them to do this was also found innocent, but I haven't found any comprehensive information about what the DA plans to do as a follow up or about what disability groups are doing.


"Could not be evacuated" is, from my perspective, a ruse. Why? I'm sure it was extremely difficult to evacuate elderly, frail people from the seventh floor. Nevertheless, that is why we put loved ones in nursing homes: so that if anything happens, there are people around to serve in just those kinds of emergencies by using their knowledge TO EVACUATE the people.

What I am saying is that the doctors/nurses didn't even TRY to exvacuate their patients on the seventh floor: they pushed someone else overboard to save themselves, which is wicked and inexcusable.

[u-dog]

Red-

I would sincerely like to know where you read this. I have been unable to find any updates about what has happened with the case since two nurses were acquitted in exchange for their testimony. I heard that the doctor who ordered them to do this was also found innocent, but I haven't found any comprehensive information about what the DA plans to do as a follow up or about what disability groups are doing.


"Could not be evacuated" is, from my perspective, a ruse. Why? I'm sure it was extremely difficult to evacuate elderly, frail people from the seventh floor. Nevertheless, that is why we put loved ones in nursing homes: so that if anything happens, there are people around to serve in just those kinds of emergencies by using their knowledge TO EVACUATE the people.

What I am saying is that the doctors/nurses didn't even TRY to exvacuate their patients on the seventh floor: they pushed someone else overboard to save themselves, which is wicked and inexcusable.


PROGA! Did you EVEN WATCH THE NEWS DURING AND AFTER KATRINA? The federal government and the Army ABANDONED NEW ORLEANS for days and days and days!! there was no water, no power, no air-conditioning, no transport, no telephones, no TV, no cell phone coverage, NO POLICE PROTECTION. for something like 5 days. This particular hospital WAS COMPLETELY SURROUNDED BY WATER. The basement and first floor were flooded.

IF some doctor decided (and I stress the "if" because the Grand Jury declined to hand down an indictment in the case) that they had to choose between euthanizing some dying patients to save them the horror of dying slowly under those conditions THAN I FOR ONE AM NOT GOING TO JUDGE HIM or HER!!!

In crisis situations like Katrina where society has basically disintigrated around you then TRIAGE is the name of the game. You treat the ones you can save and leave the others. If they're going to die anyway you help them do it as painlessly as possible. In those conditions THAT IS WHAT PRACTICING MEDICINE IS ALL ABOUT. Ethics symposiums can toss these questions around all they want in the air-conditioned ball-room of some big hotel but those people did what needed to be done when it needed to be done while our dear PRESIDENT and his political appointees sat around in Washington with their THUMBS UP THEIR BUTTS!!

[Progo35]

Obviously, the government HAS NO EXCUSES, EITHER. There are horrific reports of the nursing home staff being told that no one was coming to rescue them, that they were "low priority," and I am sure that the doctor and nurses did panic. The GOVERNMENT deserves to be sharply disciplined for what it did. I did watch the news reports during this time. I also have a cousin who's home was destroyed and was then kicked out of a relative's house because she brought her cat. Nice, huh? She had to live with her sister and his husband until spring of 2006. And, I know from watching the news since then that people died from lack of simple medication and hydration, which is inexcusable and disgusting.

I do not feel that judgement is appropriate within the context you have used for it here. Yes, we should feel empathy for what the doctors and residents were going through, but holding people accountable for a bad action is not the "judgement" Jesus was talking about when he told us not to judge.

Many people who grow up to be child molesters had horrible, horrible childhoods, and many bankrobbers are desperate for cash. Does this mean that we should not "judge" them in terms of holding them accountable? Obviously, the answer is no. I'm not saying that the circumstances that the hospital staff found themselves under shouldn't be taken into consideration, but just excusing their behavior based on the conditions they suffered is judgemental in itself: it means judging that terrible circumstancs justify what the staff involved did. And that is not Biblical, moral, or fundamentally applicable to any of the tenets of most religions practiced by people. Islam doesn't saction it. Buddhism doesn't sanction it. Judaism doesn't saction it...

Moreover, I did say that this was a report. But, based on the fact that two nurses openly testified that this occured, I think that it probably did. Why else would these nurses risk so much medical and public scrutiny: do you think that they just said that to save their hides? I'm sure that factored into their decision to testify, but that doesn't mean that they lied.

But, as always, it isn't necessary that everyone here agree on everything.

[Progo35]

http://www.discovery.org/scripts/viewDB/index.php?command=view&id=1576

[scott snedeker]

Meghan,

I spoke with a patient advocate tonight in the emergency room and asked her what the credentialling and education was necessary. It is a paid position, and only a high school diploma is necessary.

This sounds like a great start for experience and adding to your resume for pursuing your passion. I forgot to ask if she participated in the ethics committee. I will remember to ask next time I see her

[Progo35]

Hey, Scott-
That sounds like something that I would LOVE to get into. Do you have any more information on how I might do that around here? THanks a bunch, I really appreicate you looking into that.
ditto-
Meghan

[Progo35]

This is more of a bioethics issue than a specifically disability rights issue, but, I am very concerned about a conflict of interest I see between the interests of disabled people's rights and the interests of gay and other minority rights. The information below is from a book I am reading called, "Bioethics: How to be a Christian in a Brave New World."

The two are on the same moral playing field, for sure. But, many of the strongest advocates for the disabled are people who the gay community considers adversaries, such as James Dobbs, who signed an important government document protesting cloning on the grounds that it could/does involve the destruction of human embryoes and seriously undermines social tolerance for imperfection. Of course, this also relates to finding cures for diseases, but the people writing this document did not say that they were against that-they argued, quite rationally, that we should be focusing on adult tissue therapies, which have had confirmed, wonderful results in treating disease. Now, I want to point out that this book does NOT rely on Dobbs research for its arguments, so please don't think that the book is not credible because it includes him as a disability "ally."

So, what I am saying, is that I am concerned about people like Dobbs being so completely discredited by the mainstream media or by the gay community that the valid things he says on other issues are ignored as right wing rhetoric hogwash. I'm not trying to lay blame on anyone, I'm just pointing out a serious conflict between the disabled and other minority communities in terms of who is supporting us. If I had to choose between supporting the ACLU, which supports gay rights but in 2001 fought with Rose Wendland to have Robert Wendland starved to death, even though he didn't have that in writing and was conscious, and supporting Dobbs....well, I think I'd have to go with Dobbs. Our "allies" are often on different sides of the street.

Any thoughts on resolving this conflict?

Any thoughts?

[scott snedeker]

Well, this is a problem. If Charles Manson decided to lead a crusade for rights of the disabled after suffering a stroke by contributing drug money and money found by his neonazi organization following mysterious deaths of non-Aryan people, then is this support ethical to accept?

How dirty do you want to get your hands in pursuit of an ideal? Where you draw the line will be a watermark of your own ethical hygeine.

I consider Dobson to be a murderer. His commits and has committed crimes against humanity with a Sanctimonious malevolence comparable to the worst viilains in history. I believe he takes some benificent diguises to conceal his true predatory malevolence.

My treatment of his offer would be the same as if Manson offered similar. Get the hell out of here! your "help" will ruin my mission! you unworthy piece of human offal!

What appears to be a support will infact likely castrate this goal. I'm certain that if you side with him that you will declare yourself a mortal enemy of the glbt community. The issue will suffer the disconnection between folks like you and the glbt community.

Ghetto thinking among the glbt has been "Others are entitled for us to sacrifice our needs for them because we are inherently less needing and less deserving." It is a false lesson we have been abused with all our lives.

I have no doubt that Psychological damage to glbt persons is too deep to compromise. To side with Dobson would be like asking an adult who as an adolescent who had been raped every day of his/her life to please give this homeless sexually needy sex offender a place to live in your house.

I think you can imagine the response to this advocate of the sex offender.

I urge you caution and a "walking on eggshell sensitivity" with discussion of this topic on this forum.

I know I had a very strong rise of anger and feeling of threat when reading this last post. I know that It is not directed at me personally, but if I felt it then so will others. There are mines in this field of discussion planted by Dobson himself and others.


On another topic. I met with the Department of patient advocacy representative. They do participate in ethics committe decsions. You can get more information at www.irhf.org You can find a local hospital and start participating in medical ethics meetings perhaps in as little as two months! That's all you have to do actively participate in the solution to the very passionate grave concern you are drawn too!:D

I hope you do start and keep us informed of the challenging experience of medical ethics!:D

[Progo35]

Hey, Scott,

I just want you to know, up front, that I didn't say any of this to offend you are anyone else here. The very fact that I posted this issue is because it clearly needs to be resolved. Obviously, I don't want to allign myself with someone who is involved in the oppression of another people group, that would be wrong.

But, from that vantage point, if you think that I should write to Dobson and say, "The disabled community doesn't need your help, get out of here!" Then, you and the other members here must write to the ACLU and tell them that you do not want their help because they have advocated the involuntary starvation of disabled individuals: and I'm NOT talking about Terri Schiavo, I am talking about other cases in which people have been, according to the medical community, CONSCIOUS. These people had nothing in writing saying that that's what they wanted. THAT is murder, that makes the ACLU MURDERERS. Are you going to write to them tonight and say that you want them to stop supporting the gay community because of what they've done to the disabled community? Because, when the gay community alligns itself with them, then Scott's analogy is just as applicable to that relationship. This is the kind of conflict that I am talking about.

But, I really appreciate your feedback. Please don't feel threatend. I really hope that we can have further discussion about this conflict of interest so that we can think of ways to HELP EACH OTHER as minorities that are oppressed. Maybe if we, as respective minorities, speak to our respective allies on each other's behalf, we could influence a trend towards increased cooperation between them, thus benefiting everyone. I think that that is probably how we can best solve this issue. In fact, maybe that's what we should do. Maybe disabled individuals should try writing letters to Dobson asking him to be more sensitive to the gay community and gay individuals could write to the ACLU asking them to be more sensitive to the disabled community? This kind of cooperation, I am convinced, is necessary.

Once again, I am SO SORRY if I made anyone here feel threatened. It certainly wasn't my intention to do this at all, nor was my reflection intended to sanction Dobson's rhetoric.

[scott snedeker]

Hey, Scott,

I just want you to know, up front, that I didn't say any of this to offend you are anyone else here. The very fact that I posted this issue is because it clearly needs to be resolved. Obviously, I don't want to allign myself with someone who is involved in the oppression of another people group, that would be wrong.

But, from that vantage point, if you think that I should write to Dobson and say, "The disabled community doesn't need your help, get out of here!" Then, you and the other members here must write to the ACLU and tell them that you do not want their help because they have advocated the involuntary starvation of disabled individuals: and I'm NOT talking about Terri Schiavo, I am talking about other cases in which people have been, according to the medical community, CONSCIOUS. These people had nothing in writing saying that that's what they wanted. THAT is murder, that makes the ACLU MURDERERS.
Touche'!
Are you going to write to them tonight and say that you want them to stop supporting the gay community because of what they've done to the disabled community? Because, when the gay community alligns itself with them, then Scott's analogy is just as applicable to that relationship. This is the kind of conflict that I am talking about.
Touche'! Again!
But, I really appreciate your feedback. Please don't feel threatend. I really hope that we can have further discussion about this conflict of interest so that we can think of ways to HELP EACH OTHER as minorities that are oppressed. Maybe if we, as respective minorities, speak to our respective allies on each other's behalf, we could influence a trend towards increased cooperation between them, thus benefiting everyone. I think that that is probably how we can best solve this issue. In fact, maybe that's what we should do. Maybe disabled individuals should try writing letters to Dobson asking him to be more sensitive to the gay community and gay individuals could write to the ACLU asking them to be more sensitive to the disabled community? This kind of cooperation, I am convinced, is necessary.

Once again, I am SO SORRY if I made anyone here feel threatened. It certainly wasn't my intention to do this at all, nor was my reflection intended to sanction Dobson's rhetoric.


You have given me a gift, Meghan.

It is the realization of contrast between where my emotional/ spiritual development presently is, and where I desire it to be.

In this brief discussion I sensed an emotional/spiritual escrow within me that is presently severely unsettled. Right now my reaction to Institutionalized Homophobia has only progressed from Fear and disempowerment to vengence to rage to angry self-righteous entitlement to defense of gay people.

These are steps up the emotional scale from the teachings of Abraham

I am no longer getting as much gratification and comfort from angry self-righteous entitlement as I used to. I can feel that it is time to grow. If I perform an emotional/spiritual inventory I think I can move on to the next level in climbing up the emotional scale.

I think I can move from angry self-righteous entitlement to annoyed self-righteous entitlement. It's a baby step but one that I can swallow. It is not possible for me presently to adopt a completely nonviolent level of emotional/spiritual development on this issue without descending back to powerlessness. That is many steps away in the climb.:dove::flower:

I'm overdue to return to the Short Mountain Sanctuary for a good immersion in Radical Faerie Love, in Peace, in Harmony, and in Light!

:love:

[Progo35]

I should acknowledge and forgot to mention last night that Dobson has opposed the new hate crime legislation and thus is doing a disservice to disabled people because they are to be included in this law as well as gay individuals. So, obviously, big mistakes are being made on both sides.

[scott snedeker]

I should acknowledge and forgot to mention last night that Dobson has opposed the new hate crime legislation and thus is doing a disservice to disabled people because they are to be included in this law as well as gay individuals. So, obviously, big mistakes are being made on both sides.

My sentiment aside, evil is as evil does.

While the ACLU may have some big faults, in general, I'm sure they are not predatory.

Without a shadow of a doubt in my mind, Dobson is.

[Progo35]

Actually, I think that the ACLU is FAR more predatory: for instance, [Here I go, being irrational (with 10 million other people) again], they participated in overturning the legislation that protected Terri Schiavo from being starved to death, and wanted to help starve someone else to death. To my knowledge, Dobson has never tried to help kill any homosexuals. If the ACLU wanted to say that being disabled was an abomination but would shut up in terms of protecting the vulnerable's so-called 'right to die' when it isn't even documented or is contradicted by the now injured person himself, then I could put them on the same plane as Dobson. Of course, we are talking from two different people groups with different experiences with this one man. I don't know of EVERYTHING that Dobson has ever said in the same way that I know a lot about what people say and do in respect to the disabled community. I would expect that the people here have followed his remarks more closely. But still, remarks do not equal advocating that someone be euthanized because they are gay. Never have I heard of Dobson saying that hospitals should starve their gay patients to death, because their spouses said so, or have I heard him advocating for the so-called "free speech" rights of NAMBLA, which has given pedophiles techniques on how to seduce and molest children without getting caught. Dobson has not done this. False, hurtful info is the same regardless of who its about: and the ACLU has based its relationships with the disabled community on false, hurtful info AT LEAST as much as Dobson has done in his relationship with the gay community.

[scott snedeker]

I would have to disagree with nearly every part of your last post. The chosen examples that you put forth ring of cherry picking items and then skewing the details to fit an agenda, frankly. I don't think your characterization of Dobson could be more inaccurate than if you were in his direct employ.

As I have mentioned before, I agree with and support your agenda, but I sense a dominating overtone of urgent personal involvement that I feel is overpowering reason and objectivity. I sense an escalating sensationalism as if to provoke some calculated desired response.

This is something I call "provoking reciprocal indemnity." The title of this thread "Why doesn't anyone give a crap" resembles an archtypal example of this strategy

This is a form of manipulation and will alienate people because it causes an "I don't know what it is but something doesn't feel right" sensation.

You do not need to be right on every aspect of every debate of every issue to be legitimate and worthy and potent. All of those qualities are a given.:D

You are articulate, intelligent and most of all passionate. You are potent indeed! You make points that cause me to rethink my postion and sometimes jar me into dynamic thought and out of assumed posturing. I find that very refreshing. :cool:

But I am not stupid and can research claims that don't sound right, like the pathology report of Terri Schiavo, which you keep bringing up. There was no living cortex. I submitted the patch stating this on this forum. :rolleyes:

Of course alienation is not your goal, but I sense that you are accomplishing just that on this forum with how your approach comes across in your posts. By pushing directly against what you don't want you ironically make it stronger. (From Abraham's law of attraction):mad:

I would suggest considering a softer more direct approach. One that attracts people, makes them feel good when they consider your point rather than guilty for not seeing it. (Also from Abraham's law of attraction):)

The potential created by the contrast of the two approaches: One which results in what you really really don't want, helps define a desire for what you really really do want. This contrast is necessary for launching a rocket of desire that you now must get up to speed with to continue your pursuit of well being. So don't beat yourself up for having done it, just change the tune... because it is a necessary stage for your spiritual growth that must occur before the action to be realized.:cool:

And as I have mentioned before, your well being must come first so that you can maintain your momentum that helps others. (remember the beehive) There is great love for you in the world. Align with it, and you will be more powerful and effective than you ever dreamed possible. Provoke negative emetional *vibrations, and every moment of every day will seem a fruitless struggle. You have unlimited power and freedom. "You are so free that you can choose bondage." Or you can choose success, joy and privilege!:love:

p.s. You Know You can't post on this forum without receiving a good dose of spirituality now and then:lol:
*p.p.s I left "emetional", originally a typo but it seems to be a cross between emetical and emotional and fit well:lol:

[Progo35]

I'm sorry, everyone. My aim is certainly not to legitimize the victimization that Dobson has caused in the gay community. And, really, what I should have said in my last post is that the ACLU and Dobson are both equally at fault-that I feel that the ACLU is just as predatory as Dobson, not that Dobson is less predatory. I still feel that way: they are equal. What the ACLU did in the case of Robert Wendland, who was certainly not braindead, and their failure to come to the aid of futile care victims-is to the disabled community what Dobson's rhetoric is to the gay community. What I am saying is that it is futile to try to argue that one is better than the other. That was basically my reaction to Scott's last post. If you say that the ACLU is not predatory but Dobson is: I get upset because I think that what they've done in terms of the disabled comunity is just as bad, and I don't like them being given the benefit of the doubt for doing to the disabled community what Dobson has done to the gay community. Regardless of one's position on the TS case, Robert Wendland, another man without any statement saying that he wanted to die, was saved from starvation when the CA supreme court ruled in his mother's favor: but the ACLU was right there with his wife, trying to have him starved even though their press release ACKNOWLEDGED that Robert was able to feel pain and emotion. Now, who made THEM doctors? WHat right do they have to advocate for something like that, anymore than I have the right to advocate the position that TS wasn't brain dead, because I'm not a doctor?

Moreover, I posted several threads on this topic, including my "Any thoughts?" thread and responses to other topics, and this is the first real involved discussion I've seen among the members of this forum about these issues. I've seen expressions of sympathy prior to this forum, but not as much discussion as I feel is necessary to aid collaboration between the gay and disabled communities. I hope that by sharing advocacy strategies, we might be able to help each other.

"Why doesn't anyone give a crap?" can be manipulative, however, calmer posts have not recieved the same level of response. Furthermore, I'm being honest. I really don't feel that the mainstream media, the presidential canidates, academia, and generally, the powers that be "give a crap." If they did, Majorie Nighbert would never have been allowed to be starved to death while begging for food and water: Or, if she were, we would at least know about it.

I'm certainly not Dobson's supporter. I think that his books on homosexuality have grossly misinformed and biased his readers. People can and have used any kind of religious argument that they can to justify their bigotry, and I am sincerely sorry on behalf of the Christian community for contributing to this. I know, as a Christian, what it's like to be rejected by other Christians. It's truly awful, and something that has hurt many people here, as well as non-Christians who are influenced by unscrupulous believers who don't know how to act like Christ.

I really hope that I have not alienated myself from the people here, as this isn't my aim. If I have done this, please let me take this opportunity to ask for forgiveness and invite further critique from other members, either via this forum or by PM. I humbly ask for your understanding of how frustrated this issue can be for all of those involved, and how this can negatively impact how I or other individuals come across from time to time.

From the bottom of my heart, I want to help the gay community achieve equal standing before the law. It's not just that I want different groups to collaborate on this particular issue, I really want to be helpful in my own way and encourage others to do the same. I continue to welcome everyone's suggestions for doing that.

[tdogg]

Meghan

The problem with citing specific cases is, unless you are privy to the medical records, court records and discussion directly with those concerned (the medical providers, diagnostic MDs, nurses, both sides of the family rift), one cannot possibly attain a knowledeable edcuated opinion. One can only base an opinion on personal beliefs and what is heard via media.

It's ok if you hold a negative opinion regarding the ACLU, that is your right and you have some knowledge and experience to base your opinion on, I'm sure. But to pose the question in an accusatory tone, which implies anyone here having a positive opinion regarding the ACLU, it doesn't sit right. You aren't likely to encourage dialogue with that attitude. It might not have been your intent, but that's how your posts here have come across to me.

I have a negative opinion of Dobson, based on my personal knowledge and experience. I do believe that what Dobson preaches (very strongly by the way) is in some part responsible for some of the hate crimes against GLBT people. I'm not sure that I would support even what I might feel are positive aspects of Dobson's work. This is my opinion and how I feel. If you don't share it, there isn't anything wrong with that. Perhaps you don't feel Dobson has done anything negative against you or causes you believe in. Cool.

It's all in the wording. Actual text isn't nearly as important as how it comes across to the readers. I was pretty turned off by this thread and especially your recent posts and have elected to avoid reading much or poasting at all. But thought this particular message might be pertinent to future threads. It's no reflection on you as a person or the cause(s) for which you feel so strongly. I admire that. I just felt a bit manipulated and put down.

[Zerbie]

Progo

Re-read Scotty's last post to you.

I've begun reading some of your recent posts and my response is to dismiss them entirely, and now my entire emotional/psychological response is to dismiss you. You are coming across as manipulative and frankly, slimy, and I am not willing to engage in further discussion with you until that changes.

There is something strikingly wrong with nearly everything you've posted here in recent days: that is why I have stopped replying to you.

Scotty has not. He's your friend. Talk to him. He really is an angel.

[Progo35]

I'm not trying to be slimy. Really, I was just trying to resolve a very logical problem: how can different minorities work together when the people supporting them hold different and often hurtful/bad views? What solutions can we think of for that?

My point isn't to say that I think that the ACLU is bad: obviously, it has protected the rights of many Americans. I don't think that the ACLU "has it in" for the disabled people. My point was to highlight potential conflicts that could create walls between two different minority groups.

From the responses my posts have generated, I feel that even bringing this problem up has done just that. Why are my opinions regarding what happened to Terri Schiavo so offensive to everyone? Why, when I draw a parallel between two different parties who have both done bad things, does this come across to everyone as my endorsing either one of their actions? Why does my saying that Dobson hasn't directly participated in killing someone come across as my denying the fact that his rhetoric has inspired hateful attitudes and, thus, may very well be responsible for hate crimes?

So, I'm sorry...and I've already asked for forgiveness: but I was just trying to deal with the reality of a social conflict, not pigeonhole either party as entirely "good" or "bad," or to imply that you cannot criticize the ACLU and approve of its other actions at the same time. It truly saddens me that what I have posted here has turned people off from this discussion. And, frankly, I don't know what to "change" about my posts, as I am just recounting what I have experienced and it was never my intention to imply anything that would put the people here down.

If this post is going to cause people here to feel hurt and angry instead of serving its intended purpose of discussing hard questions about how disabled people are treated in society and how that relates to other minorities, including the gay community: then perhaps it should simply be shut down. I have no interest in exaccerbating conflict or hurt when the thread was intended to address pertinant issues: that isn't beneficial to anyone here.

[Daniel]

Megan,

I'm wondering if you realize how much the members of this forum have supported you in your concerns on this thread. Not only that, they've had- Scotty especially- concrete suggestions in how you might go about pursuing your passion.

When the suggestion of being a patient advocate was introduced to you, you ignored it. Didn't have a word to say about it. And speaking frankly, one wonders why.

That is something you can do. It's in the real world, not on some forum where you get to hear your own words and be 'right'. And I know all about that: I have far more words written here, and I love to be right. But what does it amount to? What does it mean in the real world? And you know what? There is a great difference between being right and being happy.

I encourage you to get out and do something. Might make you happy.

[Progo35]

I replied in regard to possibly being a patient advocate and said that I would be very interested in that. I have looked at the website and, thus far,I need to look at it some more before I can reply/respond on that topic. One of the problems is that when I looked at the website I couldn't find any instructions on how to become certified as an advocate or where people should look in their particular area. When processing this possibility, I have to think of what this entails in relationship to school, keeping a certain GPA for my major, my familial obligations, friends, any possible health problems, and I have to plan, which is when I most need advice. I haven't gotten to the planning phase yet. I think that people have given very good suggestions...but I really was just trying to play "devils advocate" in replying to some posts, not come off as inconsiderate...so, that I'm a bit surprised by some people's reactions, which is why I pointed out that what I wrote was intended to make people think, not make people angry or upset.

Right? I certainly don't think that I have to "hear my words and be right." I was just trying to explain where I was coming from in terms of my positions on things. The people here certainly don't have to agree to talk about this subject constructively. Frankly, if I cared about being affirmed as "right," I wouldn't have said anything that I have said in my last few posts. One of the things that bothers me is the assumption that, for instance, those who have a different view on the TS case are irrational while those who agreed with her husband are rational. That is not fair to the individuals who hold that point of view. I don't see a difference between me saying that the ACLU has done some crappy stuff, and also agreeing that Dobson has done some crappy stuff. Obviously, both entities have done crappy stuff, and I don't think that that observation constitutes being "slimy," "manipulative," etc: it is logically true. Both have done crappy things. But, I don't see how you can excuse the ACLU for advocating the starvation of disabled people while being livid at Dobson for what he has advoacted regarding gay individuals. I anticipated that we would all be mad at their actions in these respective issues. In short, I don't think it is accurate to say that Dobson is predatory in his attitudes/policies toward gay people, which contributes to hate crimes, and also say that the ACLU's propensity toward advocating the starvation of disabled people isn't equally as damaging. Now, does the ACLU's position in these particular cases make their work for the LGBT community or other minorities invalid? No. Does this mean that if you support the ACLU, you also support their position in these cases? No, of course not. Do I think that the ACLU is the disabled community's "enemy" or that it hates disabled people? Never,s I simply feel that they have made some very bad decisions in regard to some of its members, based on misinformation and their interpretation of what the Constitution says regarding this case. Everyone makes a bad decisions, even when they are vehently trying to do the right thing. The way I see it, we could analogize these issues to a gay/ally person and a disabled person drowning in a lake. What I want the ACLU to do is throw its oar in to help the disabled community. And, I would hope that collaboration between different minorities would make people like Dobson begin to change their attitudes toward these people groups. Maybe someday, Dobson will change his attitude and throw his oar in to help the gay community. You never know. People can change, and a drowning person needs help whereever he can get it. The greater variety within the support network of entities, the more likely the cause is of being advanced.

There is a poem that makes me think of what happens when small details divide people:
For want of the nail, the shoe was lost
For want of the shoe, the horse was lost
For want of the horse, the rider was lost
For want of the rider, the message was lost
For want of the message the battle was lost
For want of the battle, the war was lost
For want of the war the kingdom was lost-
and all for the want of a horshoe nail!

I enjoy being here and as I said, I am grateful for the support that people here have given. Nothing I have said in this forum was meant to imply that anyone here doesn't "give a crap" or that they are taking an adversarial position on disability rights. I just don't want to be labeled as "irrational" either because I ake controversial positions on certain issues. I didn't know that I was hurting people's feelings on a personal level or making people angry until others replied today and let me know. Now that I know, I can try to ammend what I say/how I say it...I'm not even sure when my posts became "slimy," and would like to know when this began so that I can know specifically what I said that came across this way. For some people, this might seem self-explanatory, but I sometimes have issues "reading" what people are trying to communicate without actually saying so, so unless the afffronted individual says, "this particular comment offends me on a personal level and makes you seem slimy," I don't know specifically what I shouldn't say. I'm not saying this to be sacastic, I'm serious.

As for doing something, I have finished my first set of letters to be sent to educational institutions, the ACLU and some other entities. The letter to the ACLU basically asks for their help in defending vulnerable people and presents concerns about their positions on the RW and TS cases. I would hope that this would be recieved as amicable, constructive criticism. Until I can figure out how being a patient advocate or doing something else directly for the disabled community fits into my fall schedule, which will begin soon, that is about what I can do.

[Daniel]

Megan- I see that in the page before this, you did show interest in Scotty's suggestion, but not did not respond to his info in this page, until I spoke up about the matter. To this reader, you seem to have invested a great deal of energy into your current postion, one which seems to have ultmate priority, above and beyond any said postion in the real world.

Why do I think that? Because you are already making excuses for yourself.

You couldn't find the instructions?

I don't think the lack of instructions would stop me if I was as passionate was you claim to be about this subject.

Sweet heart- Let me tell you something. You need people. Not letters.

Real live-in-the-flesh people. The kind of people that challenge the bejeezes out of you. And give you real experience.

Get some grounding.

[scott snedeker]

Time to throw in the towel

Change may be the best solution. The experience on this forum is valuable.

"Once you go down that road you can never look back.
A train can't run on a tore-up track
Once you leave that way you can never go home."

Part of my heart goes with you, Meghan, but I'm afraid the rest of me can go no farther. Your experience here, hopefuly will be a valuable learning experience.

The lesson I believe is that in their own domain people need sanctuary. Violation of such is untenable to the stewards of which I consider myself included.

Start anew in a new horizon of a new dawning. This will be my final post in response to you. I wish you success in your mission, and maybe someday when I hear of your accomplishments, I will remember your brief time here.

This is Good bye. Remember that your wellbeing is the most important priority in accomplishing your mission. You are entitled to joy because it is a given.

Namaste

[Daniel]

Does God love us more when we are victims or victimizers?

Same coin. Different side.

Be neither victim nor victimizer. That is the middle, and only, path worth following.

[Steven E. Webster]

So, what I am saying, is that I am concerned about people like Dobbs being so completely discredited by the mainstream media or by the gay community that the valid things he says on other issues are ignored as right wing rhetoric hogwash. I'm not trying to lay blame on anyone, I'm just pointing out a serious conflict between the disabled and other minority communities in terms of who is supporting us. If I had to choose between supporting the ACLU, which supports gay rights but in 2001 fought with Rose Wendland to have Robert Wendland starved to death, even though he didn't have that in writing and was conscious, and supporting Dobbs....well, I think I'd have to go with Dobbs. Our "allies" are often on different sides of the street.

Any thoughts on resolving this conflict?

Any thoughts?

When Soulforce has been at its best in its official communications on Dobson, it has pointed out that Dobson is not an evil demon. Dobson is not always wrong or evil on every matter. In fact, Soulforce has said that Dobson does offer a lot of good advice to families about child rearing. It's just that Dobson is terribly, awfully, wrong about LGBT people. Dobson does spiritual violence against gay people, not because he is an evil man, but because he is a mistaken and misinformed man.

Similarly, you would be mistaken to demonize the ACLU because, in your opinion, the ACLU may be tragically mistaken when it comes to the rights of the disabled. You cannot condemn the good that ACLU does and intends to do, simply because they are, in your opinion, mistaken or misinformed about the rights of disabled people.

Now, I've looked at this Robert Wendland case via Google. I'm not so sure you are any more right about the Wendland case than you are about the Schiavo case. As a matter of fact, your doctrinaire, and, in my opinion, irrational position on the Schiavo case tends to make me doubt your position on the Wendland case as well.

Do you believe that death is the worst thing that can happen to someone? Would you want the ACLU rushing into court to keep you living even if you life was a torture to you, you really really wanted life to end, but you could not express your wishes?

I believe we need to stand for the rights of disabled people--but I disagree that having so-called "right to life" groups going to court to interfere with the end of life decisions of disabled persons and their closest family members is defending anyone's rights. Robert Wendland's right to pull out his own feeding tube (which he did four times) was denied him, it seems to me.

Steven Webster

[Steven E. Webster]

Do you believe that death is the worst thing that can happen to someone? Would you want the ACLU rushing into court to keep you living even if you life was a torture to you, you really really wanted life to end, but you could not express your wishes?


I'm sorry, I may have been too harsh in my previous post. I'm not sure I should have used language like "irrational." But I would like you to answer the questions I just quoted above. It seems to me that the most extreme of the "right to life" people would essentially invalidate all legal documents like "living wills" that stipulate that food and hydration should be withdrawn under certain circumstances. That seems like an irrational belief to me in that it seems to be grounded in beliefs that are beyond reason. Beliefs like "suicide is always wrong" and "refusing food and hydration under any circumstances would be suicide (or murder)."

Similarly, I believe that the belief that abortion is always wrong under every possible circumstance is also an "irrational" belief. That is not to say abortion isn't a very serious moral issue--it's just that I don't agree that it is always wrong under every circumstance.

Steven Webster

[tdogg]

When I was much younger, and life was still something amazing, new and unfathomable to be without, I used to think it would be better to be a living vegetable than dead. But now that I am older, my views have changed. I have experienced life in realms where I advanced in my beliefs to view some cases of 'living' to be worse than death.

Case in point, history first...

My father suffered a debilitating stroke in 2002. He almost died, lost almost all ability to communicate and other than limited walking with a walker, was relegated to his wheelchair. Over the last few years his brain has atrophied to where he has lost some thought process, it takes him longer to process things, you have to speak simpler and he communicates with the same handful of words to mean a variety of things.

In April he had a serious fall and bleeding on the brain. Now, I love my father very very much, he is an incredible human being in many ways, and I dearly miss his intelligence and logical way of thinking. I spent the first two nights in the ICU helping the nurses keep a 24 hr watch on him. The first night was the most miserable night in my life, and likely in his. I actually came to a point where I ALMOST prayed God would take his life. It was horrible, I cried a lot and he was constantly tossing, turning, trying to fall out of bed, stripping down, trying to take all the lines out, not comprehending anything but his need to cool off and take all life lines out of his body. It was an all-night struggle, and he had it worse of all.

I experienced first hand the ability to see that death would be better than a completely miserable life. The idealist in me gave in to reality.

Eventually my dad got a little better each day and after a couple months in 2 nursing homes, he is back at home and my stepmom takes care of him. It's been an extremely difficult few years for her, it's taken a toll on the entire family. As long as my dad can live a reasonably comfortable life with a minimum of pain, and have some joy in living, I'm ok with him being alive. But if we go back down the path of pain and misery - truly what is the point in having him hooked up to various machines to keep his heart pumping and his brain somewhat active???

[Daniel]

Tdogg- I hear you loud and clear.

I watched my own grandmother take care of my grandfather for seven years after he had a stoke which left him paralyzed on the left side of his body. Those years took a tremdous strain on both my grandparents.

After he died, she had about a two years of good health, and then her own began to crumble: the connective tissue between the brain hemisphere's began to atrophy. First the short-term memory went, and then after about three years, the long term got pretty scrambled too. It was a long descent that took five years. It was very hard on my parents who visited every day, morning and evening.

I am very thankful that my parents saw to it that a DNR order was put into place. My grandmother didn't want to be kept alive at all costs.

I was there when the end came. It took about a week.

Those who imagine that my grandmother was somehow starved or deprived of care have no idea what end-of-life care is all about. Hospice care is not about that. And I fear that a projection of one's own fear of death propels many to subject their loved ones to procedures that prolong their suffering.

We live in a culture that prizes youth and keeps death out of sight. That's what denial does unfortunately. We think it can't happen to us. But the truth is: no one gets out alive.

So how are we going to live? In fear? Or in love?

I think that's our choice.

[Progo35]

Hmmm...I will respond with some basic responses to Steven's questions first.

LIVING WILLS

If someone has, in writing, stated that he or she wants to die under certain conditions, than I think that those wishes should be honored. My problem with both the TS and RW cases was that neither person had a living will saying that they would have rather been dead then been critically brain injured. If they had, their situations would be entirely different matters. My parents, for instance, have told me that if they are cognitively devasted, they would rather not have a feeding tube. Both of them have that in writing. People frequently honor their loved one's written wishes of not having a feeding tube. Those editorials that I have read on both cases recognize the patient's right to refuse medical care. What they, and I, am extremely concerned about is the following:

1) U-Dog's situation with his dad is heartbreaking. Of course U Dog should honor his father's wishes if he were hooked to a machine. But, neither individual that I have used as an example were hooked to machines. The feeding tubes were a conveinent way to get nourishment into their bodies and their brains had continued activity in them all by themselves, not because a machine was making their hearts and lungs work.

2) Nurses testified that Terri S. swallowed Jello that was fed to her and that she swallowed her own saliva, and that given therapy, she might have been able to learn to swallow and talk. But, after suing and getting a million dollars for her rehabilitation, her husband would not allow her to have therapy. This is not a rumor, it is well documented. This, to me, is a very logical reason to question his motives. In the case of RW, he was not hoked up to machines, either.

3) During the TS situation, I said to my friends (and continue to feel) that it was acceptable to terminate life support in terms of machines that were breathing for her but not a feeding tube that was more a convienence tool than anything else. I feel the same about Robert Wendland, although I only learned of his case recently. Now, his wife may have been acting in good faith, but like Michael Schiavo, she had not participated in caring for her spouse for several months before requesting that his feeding tube be removed. Particularly in M. Schiavo's case, one pauses to wonder why either party waited so long to make their spouses' desires known.

4. in both cases, there were other family members who were willing to take care of these individuals. As several doctors said in sworn affadavits, the lack of a written statement and the presence of those who are willing to care for the person are usually grounds for the more conservative course of action, i.e, sustaining the person's life. This, however, would not occur in the case of a person with a written statement regarding what they wanted, nor would I support overriding such a declaration.

5) Finally, let me reiterate that in the logical assessment of myself, several doctors who submitted affadavits, many disability activists and others, neither Terri Schiavo nor Robert Wendland were sick individuals who were dying of heart failure, cancer, etc. They were both in their 30s-to 40s and in otherwise good health besides being brain damaged. Thus, their bodies weren't shutting down in the same way that a dying person's is. Thus, they should be given therapy, taken outside, and spoken to like normal people. Otherwise, there is not stimulation to aid in possible recovery. A doctor in favor of removing Robert's feeding tube testified that Robert was responding to therapy, which makes it difficult to assert that he would have needed a feeding tube for the rest of his life. In Terri's case, she was responding to therapy but then her husband ordered it to be discontinued. This, to me, seems very "illogical" on his part.

6) Let me also say that I would have found Michael Schiavo's claims of compassion and unwillingness to "abandon" his wife much more credible if he had not a) been living with another woman b) used money from her rehabilitation fund to pay his lawyers c) visited regularly, d) allowed her to have therapy, e) expressed Terri's supposed wishes earlier, f) presented more compelling witnesses than just his brother and sister to support his statements that she wanted to die, f) not demanded that Terri's family be marched out of the hospital in the moments before her death and then tried to bury her ashes in a private place that her family could not attend the burial/would not know where she was. Newspapers that supported Michael Schiavo documented this. Basically, if Michael Schiavo's actions confirmed that he was a loving, devoted husband, I would have been far more likely to trust his assertion that Terri wanted to die. But, he did not: you cannot claim to honor your marraige vows and live with someone else at the same time, and you cannot say at a malpractice hearing that you want to take care of your wife for the rest of your life and then stop taking care of her. Neither action logically backs up such statements.


ABORTION

Likewise, I generally feel that abortion is wrong because it takes the life of a human fetus. I don't feel that it is moral for a woman to have an abortion because she wants to finish school or start a career: that is not grounds for taking the fetus's life. All women, however, should have free access to birth control and should certainly have the option to give an unwanted child up for adoption.

There are certain cases that I feel mandate that women be given the right to choose whether to end a pregnancy. They include the woman's life being in jeopardy and the woman having been a victim of sexual assault. Finally, I do not support partial birth abortion in any case, nor do I feel that being inside its mother's womb invalidates the personhood of an eight month old fetus. There is a doctor in Kansas who seems to feel differently and is now doing abortions by request on fetuses that are eight or more months along in their gestation period. Kansas law requires that an extremely late abortion must be to prevent a life threatening situation, but there is no documentation of such situations in the cases of these women. I feel that maintaining that a fetus never has the rights of a person, as some pro choice people seem to assert, is also illogical when the fetus is that far along.

SUICIDE

In terms of suicide, I don't think that the question is so much whether or not it is wrong as it is whether it is caring and loving to allow someone to do that. To me, suicide would be actively ending your life, not refusing medical care. I am not clear regarding how Stephen or others here define suicide, so if the exceptional cases you're thinking of relate to this, then our positions are the same.

Now, in going further I have to say that I suffer from clinical depression. While I have never thought that suicide is a good idea or that it would solve my problems, I have to admit that there have been times when I have considered the ramifications of taking my own life. It would obviously be crass, unloving and wrong for my family and/or friends to stand by and watch as I jumped off a roof, or, worse, supported that desire and procured morphine for that purpose. I am certain that this situation is not one where anyone here would consider suicide prevention to be irrational: yet, some proponents of euthanasia have argued that regardless of his or her reasons, each individual has the "right" to end his or her life, including those who are on medication for clinical depression. I don't want to see our country go there, for the sake of all those who suffer from mental illnesses.

Aside from this, I also see suicide prevention as a faction of moral responsibility to one another. It is a fact that improving other people's lives takes time, effort, and money. It is much more practical and efficient to put those who are suffering "out of their misery" than to take steps to improve their lives. Particularly when society does not rise up against injustices like people ASKING for food as they are being starved, or futile care laws, I feel that the logical deduction from this lack of consistency is that people and entities are motivated by what is cheap and conveinent, not by a desire to protect and love the disabled or ill individual. I think that many people do this without realizing it: they think of the cost involved in keeping someone like Terri or Robert alive and it seems so obvious that this is a strain on society, and they don't even realize that this is part of their intended "compassion" for such individuals. Many disabled people who are part of the group, "Not Dead Yet" have asserted that their doctors ENCOURAGED them to forgoe medical care when they had to have a feeding tube, respirator, etc, because this would be "worse than death." Under the Hypocratic oath, doctors are not supposed to encourage the decision to forgo medical care. They should respect someone's wishes in this regard, but they shouldn't start trying to tell people when their lives are miserable and when they are not.

I would absolutely want the ACLU to rush to court to defend me if my doctor or my family took out my feeding tube, as this is NOT what I would want. In the case of someone who cannot speak, I think it is fair to point out that spouses are not infallible just because they are spouses and that in the cases I have cited, FAMILY MEMBERS, not right to life groups, were contesting their children's spouses. Your mother and father are close family members in at least as strong of a way that your spouse is. If someone cannot say, "I want to die," it is no more logical to assume that that is what they want than it is to say that withdrawing life support is ALWAYS wrong. From what I can see, the ACLU has taken the position that removing a feeding tube is ALWAYS right, which is just as close minded. When the ACLU rushed to defend Michael Schiavo, did it consider the logistics of assuming that this is what Terri wanted? Did it consider Michael's history as a caregiver? I sincerely don't think that they did, outside of media reports. Like I've said, if Michael had demonstrated more APPLIED concern for Terri's well being, than I would be FAR more inclined to take a more moderate position on this case. If he had demonstrated that, then I would also have been more appreciative of the ACLU's support in this regard.

DEATH

There are some nights that I go to bed praying that God will take me home in my sleep that night. When I pray this way, it is usually because I am very lonely: it is a fact that I've lost several very close friends in the last two years and I don't make friends easily. Being depressed hurts the process of achieving my goals, and I worry about what my life will be like if I have to give up my dreams and have no friends. So, sometimes I feel that I would much rather be in heaven with Jesus, where there is no pain, no loneliness and no injustice: then continue with my life here. For me, personally, this passage from Philipians holds great significance:

21For to me, to live is Christ and to die is gain. 22If I am to go on living in the body, this will mean fruitful labor for me. Yet what shall I choose? I do not know! 23I am torn between the two: I desire to depart and be with Christ, which is better by far; 24but it is more necessary for you that I remain in the body. 25Convinced of this, I know that I will remain, and I will continue with all of you for your progress and joy in the faith.

This verse, to me, indicates that we are all here for a purpose and that heaven will be a joyous reward when we are finished with our work here on earth. So, I am looking forward to going to heaven-which, of course, requires that I die first-when God initiates this process. And, I have rejoiced for others when they have died, because their suffering has ended. For instance, my grandfather died in 2004. Prior to his death, something that happened with his heart caused him to break out in very painful, ugly sores all over his body. We knew that he was dying, and he did, peacefully, next to my grandmother in their own bed. He was a wonderful, beautiful man and we were naturally grieved at his passing. But, I was and am also very happy to know that my grandfather is in heaven with God, where he is made whole again.

Moreover, I felt relieved for the mother of Emilio Gonzales when he died in her arms prior to litigation in his futile care case could be concluded. It was also a certainty that he was going to die and what made his death at that time a blessing was that he did not have to suffer the pain of suffocation or dehydration that would have resulted in his support being removed. (Despite the help of a respirator, Emilio's body was breathing on its own). Also, his mother did not suffer the agony of not being able to protect her child when support was withdrawn against her will. Emilio's expected death took place peacefully: no withdrawal of support necessary. What makes his death tragic, in my opinion, is that instead of preparing to say goodbye to her child, his mother had to spend his final days fighting to prevent doctors from removing support against her will. The fact that no one on the "left" intervened in this case while also professing to ardently support autonomy and universal health care, makes me angry because THIS is illogical unless a lower value is being assigned to this child's life. To me, it makes logical sense that if someone supports abortion based on personal autonomy, he or she would also decry futile care laws, which railroad personal autnomy. So, I am agry at that inconsistency. I don't understand how the PUSH, the ACLU, the ADL, and other civil rights organizations that support all minorities have not made a peep about this unless, somewhere deep down, they agree with it, OR, they are, for some reason, not aware of these things and don't feel compelled to educate themselves.

DISAGREEMENTS, AGENDAS, COOPERATION, MORALS

Finally, I don't feel that everyone who works for the rights of the handicapped has to hold the same views on abortion, end of life issues, suicide, etc, anymore than those who work for the rights of other minorites have to agree with these issues. Although I would think that debating about it would be part of healthy discussion. Moral people hold a variety of views on various issues.

I do, however, believe that the positions below are logical, not based in extreme right to life thinking:

A) Food and hydration must ONLY be withdrawn in cases were there is a written statement from the individuals in which he or she sanctions this course of action
B) Abortions should only be carried out for the reasons mentioned above
C) Life support that is breathing for a person is a totally different animal than a feeding tube that hydrates and nourishes someone who is being rehabilitated or whose condition makes it difficult for them to swallow on their own
D) Termination of life support should be done after a period of six months to ensure that the person's medical prognosis is accurate
E) People who have directives stating that they do not want a feeding tube should have the authority to change that decision, and the difficulty some patients face in communicating like everyone else must be taken into account when trying to determine their current wishes. For instance, if someone asks their loved one to "blind twice if you want to have a feeding tube" and they blink twice, that should not automatically be written off as an "involuntary" reaction. If they did it in response to a command, than it isn't involuntary.
F) Being brain damaged, even catastrophically, does not constitute being at the end of one's life in the same way that a dying, terminally ill person is at the end of his or her life. Comparing Terri and Robert to those patients who, as their bodies shut down, do not want/need food, is like comparing apples to oranges.
G.) Being elderly or brain damaged does not mean that someone is at death's door and will not suffer from the withdrawal of food and fluids. So, that would be my basic summation of what I think.

[Steven E. Webster]

Progo,

I find much of what you say quite reasonable. On general principles I don't disagree with you on much of anything. I disagree with you on the Terri Schiavo case because I don't interpret the facts the same way you do. I am suspicious of the attacks on Michael Schiavo's character which strike me as possibly being concocted by people with an axe to grind and I tend to believe that the courts did a proper job of evaluating the situation.

The Robert Wendland case I have even more limited information about. It might even have been a more complicated case than Terri Schiavo's--so I'm not really prepared to argue this case with you, but I'm not willing to run to the conclusion that the ACLU were evil people doing the devil's work either when they came to the legal aid of Wendland's wife.

I hope that when the time comes, my spouse and closest family members will not have to fight the likes of Tom Delay, Bill Frist, the Republican party and the extreme fringe of the Right to Life movement to do the right thing by me. It's bad enough when these cases have to go to the courts--and even with proper legal paperwork, people can hire lawyers and try to interfere with just about anything by going to court or threatening to go to court.

Now-a-days we are faced with these ethical problems more frequently than in the days before anti-biotics and high technology. Many of those confined to hospitals or nursing homes simply passed away do to infection. Now we can prolong life beyond the point where it could be called really living. I imagine Robert Wendland possibly being semi-conscious and being kept alive against his will in kind of a living hell.

I hear your concern about what I would agree would be the unethical "euthanizing" of disabled people as was carried out by the Nazis. The very term "eugenics" (invented by American scientists, I believe) gives me the creeps. I think that is a real concern--but the prolonging of life when it truly is futile, when it involves unnecessary suffering and when nature, unhindered by medicine and technology, would take it's natural course towards death, also presents serious moral questions.

I saw a man with Down's syndrome on the bus today. He seemed like a happy man who may well be leading a productive life. It troubles me that persons with Down's syndrome may be being aborted before birth--that seems wrong. Who knows, some day people might be able to identify and abort their gay and lesbian babies. I do think we need to work on our society to be more tolerant and nurturing of the full diversity of human life. Hopefully, Progo, you can find a way to contribute to that--but these are not always easy black and white ethical issues.

Steven Webster

[Progo35]

I appreciate your feeback, Steven, especially giving me the opportunity to talk about where I was coming from without labeling my position. That's what I'm hoping we can all continue to do for one another.

Of course, "evil" and "the devil's work" are both very strong terms and I'd like to make it clear that didn't use either of them to describe the ACLU, nor would I. I certainly don't think that the ACLU had evil intentions. I think that they were doing what they believed to be the right thing. Hopefully, we can all work together in helping all minorities overcome injustice.

I still hope that those I have offended will give me the opportunity to make reconcilliation, even if we don't agree. But, these are very difficult issues and I understand that they are hot button things, for me and for everyone else.

[ladyinred]

This is my perspective and I'm just speaking from a personal view , my mother was on a vent dying of lung cancer. This was a hard choice, the doctor said they could have done a tracheotomy on her to keep her alive but it would traumatize her body, after hearing that putting her on the vent would traumatize her. I was sick but then was told if not that she would slowly suffocate. Then I really got sick. The hardest thing was to take my mother off the vent and let her die but she was highly medicated but it was 8 or more hours until she passed away. These are not easy decisions when making them about loved ones. But I don't know if Terry was suffering more in the long run as being practically a vegetable, which to me is no life. Doctors can try to alleviate pain as much as possible but perhaps it was better to let her finally die in peace. I know these issues are hot buttons for many people, but quality of life has everything to do with living.I did not want my mother to be traumatized more by medical procedures, or to prolong the agony.She herself expressed the wish not to be kept alive on the vent.

[Progo35]

The problem with that comparison is that Terri was not a vegetable. She was not hooked up to any machines, she only had a feeding tube at mealtimes, and was not in pain. So, it just isn't the same thing. One involves removing a machine that helps a dying person breath in the last stages of life, the other involves withholding food and hydration from a forty year old woman who, despite her neurological handicaps, was otherwise healthy. Moreover, despite what even doctors here have asserted, the position that dying via dehydration is peaceful is by no means a medical consensus.Those are just my thoughts...which I feel are confirmed the more I read about the case. But, it's good that we can discuss these issues here.

[BruceChris]

Progo, I'm sure that everyone here respects you for your beliefs. I admit that I have not read this whole thread, but some things seem very clear to me.

The most obvious is that Terri simply did not have any functioning cerebral cortex. The cerebral cortex IS the part of the brain where concousness takes place. Without concousness. there can be nothing that can be called meaningful life. Many doctors that I have talked to agree to this, and my own medical studies support this.

You can lose an arm, or a leg, and still be a person, and still have a soul. The same could be said for quadripelegics, even those who cannot speak, see, or hear.

If the soul has a place of residence in the body, it would have to be in the cerebral cortex, if anywhere.

So Terri's soul, I would have to assume, would either be with her maker, or perhaps waiting in an unconcious limbo of some kind.

Clearly, you and I differ as to whether or not someone who is catastrophically brain damaged is in any meaningful way alive, for the reasons given above. I would not wish to be kept on life support indefinitely in such a situation, although, as I see it, this would not be my problem; it would not be one that I would be concerned about, or even aware of.

It seems clear to me that the only suffering that was going on was in the lives of her immediate family, and with concerned members of the public, such as yourself.

Meghan, I hope that I haven't caused any unpleasantness here. God loves you, as S/He loves us all.

Peace and Love, Bruce Chris

[Progo35]

Bruce...

I'm just wondering: have you read any of the books that were written from her parents or laywers side of the story, ie, the ones that were trying to save her life? Because my research on any topic since beginning college has shown me that in order to truly understand the situation, you must throughly investigate both sides of an argument. Based on this research principle, I would argue that unless you have thoroughly examined the arguments of the 40 neurologists who did not beleive that Terri was in a PVS state and the statements of those closest to her who were trying to save her life, in addition to Michael Schiavo's side of the story, you do not have enough information from both sides to make the determination of whether or not Terri's higher brain functions were completely destroyed before she was deprived of food and water for 13 days.

For instance, consider this passage, as printed in Life, a biology textbook used at Northern Essex Community College, (thus there is no religious ideology influencing the choice of text) where I'm taking my core biology class:

" Hunger strikes, inhuman treatment of prisoners, and eating disorder can also cause starvation. After several weeks without food, coordination detriorates. Near the end, the starving human is blind, deaf, and emaciated (Life, 758)." As we know, the autopsy showed that Terri was blind at the time of her death.

"The brain is bathed in cerebrospinal fluid (CSF), which circulates between layers of the meninges and through cavities in the brain called ventricles. It is important both chemically for metabolism and mechanically for shock-prevention. For example, the human brain weighs about 1-1.5 kg. The mass and density of the brain are such that it will begin to collapse under its own weight if unsupported by the CSF(Wikipedia, 'Brain')."

Fluid is made of water, you cannot make fluid without water. So, obviously, denying someone any water for 13 days will make their brain shrink as they begin to die. So, of course her cerebral cortex was destroyed at the time of her death.

Do you know what I think? I think that deep down, people feel the need to believe that Terri was definitely dead, people don't even want to explore other possibilities, because if she wasn't, our society would have to deal with the guilt of what it did to her.

When I first came to this forum, many people told me that unless I had really studied the Bible, for instance, in the original Hebrew or Greek, not to make presumptions that I understood what the Bible said about homosexuality, which was often obscured by people's prejudices. On the same principle, I would urge everyone here to not to presume that they know about the state of Terri Schiavo and other brain injured people simply from looking at her autopsy report and relying on the mainstream media's presentation of its contents, as the way our culture percieves information on such people, including who we give credence to in determining what is true and untrue, is colored by prejudice as well.

[ladyinred]

Progo perhaps you are right she was disabled and not in a vegetative state, I just don't have an answer.

[Progo35]

Progo perhaps you are right she was disabled and not in a vegetative state, I just don't have an answer.

That's understandable, LID. When it all comes down to it, I think that ordinary people can rarely determine the state of profoundly disabled individuals, as their powers of communication are extremely compromised and most people, with the exception of those who have emerged from persistant vegetative states, comas and locked in syndrome, can know what is going on inside someone's body/mind. I worked with such individuals as a community service project in high school and could never tell you exactly what they were thinking and feeling. But, I can tell you that there are people who were in states similar to Terris that have emerged from their conditions because of new technology and/or healing over time.

Kate Adamson, for instance, suffered from locked-in-syndrome after an accident and had her feeding tube removed for eight days. She has written a book in which she documents being aware of what was going on around her as people refered to her as a "vegetable" and, when nourshment was withheld, extreme agony and discomfort, yet she was unable to communicate her feelings to those around her. Luckily, her husband, unlike Mr. Schiavo, insisted that her feeding tube be reinserted. Doctors left a note on his wife's chart indicating that her husband "might be delusional" because he insisted that she was still alive. Today, Kate has re emerged from that state and travels around the country speaking about her experience and campaigning for laws that prevent the withdrawal of artificial food and hydration without a written directive.

I should mention that this type of situation is not considered comparable to that in which someone is in the final process of dying from cancer or heart failure and he or she stops eating/drinking on his or her own, during the last 2 to 5 days of life or so. In those cases, the body has begun to shut down and the person is no longer hungry/thirsty. Having a stroke or being in an accident, however, is not the same thing because the recovering person simply lacks the ability to consume the food that he or she needs, not the ability to feel hunger or thirst. In Terri's case, for instance, the autopsy revealed that she had a very strong heart and, according to the coronor, could have lived for at least another ten years. Moreover, the autopsy establishes that most of the profound damage that occured in Terri's brain impacted the areas that control coordination, communication and motor skills, rather than those that controlled higher brain functions.

Thus, if she had thoughts and feelings, which many neurologists feel that she did, she could not express them without major effort and rehabilitation. During the fifteen years that she survived after her injury, Terri was not allowed outside her room or to hospice functions, by order of her husband. This is not something that has been made up, it is something that was documented by many nursing home staff. I'm sorry, but it does not look good for someone to get over a million dollars in a malpractice lawsuit to take care of someone and then deny all therapy as he is going on to build a new life. Logic indicates that there is something very wrong with these events in their connection to Mr. Schiavo's role as Terri's guadian.

Finally, the autopsy also established that Terri did not have bulimia and that there was nothing wrong with her heart, which had been previously thought to be the cause of her collapse. Friends of Terri that knew her in the weeks leading up to her collapse said that she confided that she was extremely unhappy in her marriage because of Michael's violent temper and controlling behavior, including monitoring how much money she spent and measuring the miles on her car at the end of each day. The friend also noticed bruising on her arms. One woman reported that she and Terri had gone shopping for apartments together, in case Terri decided to get a divorce. According to this friend and her family, Terri had a very difficult time with this because of her Catholic beliefs, which generally prohibit divorce.

In mentioning these facts, I feel that it it worthwhile to mention another case that recently took place in Florida. A woman who shot her husband in their Florida home told the jury that she had been physically, verbally and emotionally abused by her husband for years, yet there was not physical evidence of this and her daughter could not testify to witnessing any abuse between her parents. Nevertheless, based on the fact that many abused women do not report their abuse and on her testimony, the jury found her not guilty.

http://www.decaturdaily.com/decaturdaily/news/070418/winkler.shtml

In my opinion, this lack of evidence and the jury's decision to acquit Mrs. Winkler should give us pause when considering the relationship between Terri and Michael. The jury believed Mrs. Winkler's story and, based on that and her apparent contrition, acquited her. Now, in Terri's case, there was the following evidence indicating abuse:

-Testimony from two of her friends
-A bone scan that revealed multiple fractures after her collapse in 1990
-A forensic medical examiner who testified that Terri's neck indicate evidence of strangulation
-The fact that Michael Schaivo would not let Terri out of her room

These are just the facts that can be presented without the loophole of her family's bias coming into play. The difference in logic used to determine the fate of these two women indicates that there was a definite bias in relations to their situations. In Ms. Winkler's case, there was no evidence of abuse, but in Terri's case there was the information cited above. Why did our court system not give this evidence the same credence as the statements made by Mrs. Winkler? After all, both situations determined what was going to happen to these women for the rest of their lives (or lack thereof). Now, one notes that Terri was incapable of speaking for herself. But, in consideration of that fact, shouldn't the evidence in her medical records and the testimony of her friends be enough to speak for her, as if she were a minor?

When the discrepency between such cases is considered, an ugly reality comes to light: Without making any judgements about what she did or didn't do, one can observe that Mrs. Winkler is an attractive, articulate woman who will presumably continue contributing to society. Terri, on the other hand, lacked the ability to communicate and was confined (by her husband, by the way) to a nursing home with no opportunity to be taken out of her room. The thought of sitting in a room for the rest of one's life, unable to do anything, is kafka-esque to most individuals. We live in a society that values physical beauty, ability, achievement, and sexuality, which is why the thought of being in Terri's profoundly disabled condition is horrifying to many individuals. For that reason, our court system was willing to overlook all of the evidence and testimony indicating that Terri should have been given therapy, should not have been locked in her room, and may have been mistreated by her husband prior to her collapse. Because Terri was helpless and unable to articulate what happened to her, our judicial branch assumed that she would want to die, perhaps not even viewing Michael's actions and motivations as relevant to her appropriate fate. Despite the difference in evidence between them, I'd say that as a woman, Mary Winkler was given much more consideration than Terri Schiavo, whose family would have willingly given her the opportunity to go outside, participate in family functions, and recieve therapy.

In order to learn more about this topic, I suggest that people either look at the links I've posted on these forums, do their own research, or read the following books to decide for themselves which case makes more sense:

A Life That Matters, by Mary and Bob Schindler with Bobby and Suzanne Schindler

Fighting for Dear Life, by David Gibbs

Terri the Truth, by Michael Schiavo

[ladyinred]

It would seem that she should have been given therapy and other help,tell me if I am correct were there indications that she would show symtoms of not being in a vegetative state, if my memory serves me correct didn't she smile at times? Sometimes I have a lousey memory so I often have to check into things..She probably should have been classified as severely diasbled then and had some recommended course of treatment on an ongoing basis. I will tell you there are stories about people recovering from coma states and with ongoing treatment they're lives improved. Hey I just found something that might confirm your findings. Are you aware of this site:http://www.terrisfight.org/quicklinks.php?id=50,here are some videos that were posted of her responding to different stimilus or mother, etc.

[ladyinred]

There is no way after watching these videos she could be called in a vegetative state.. You were RIGHT on target, she should have been classfied severely disabled and not in a vegetative state. Those were astonishing......

[Progo35]

Hey, LIR,

I'm so glad that you got to see the videos on the website. Yes, I've been to that website several times and I have a link to it on my website, www.studentsandcitizensagainstfutileethics.org. In asking permission to do so, I spoke with Bobby Schindler, Terri's brother, which I also found to be edifying. :)

[ladyinred]

If I remember right wasn't the family trying to ask the husband to turn over care of Terry to them? Here is something that may be of interest to you I found:http://www.freerepublic.com/focus/f-news/1005899/posts

[Progo35]

Yes, Terri's parents and siblings repeatedly beseached Michael to turn over Terri to them, citing that he had moved on with his life and that they would willingly take good care of her. They even offered to let him have whatever visitation he wanted with her, to sign any documents to procure a divorce, and to let him retain any rights that he had to Terri's property if he had remained her husband. Basically, anything was fine with them: as long as they were allowed to take care of Terri.

[ladyinred]

That is a sad statement of the husband then. It seemed lik he just wanted to put her in hospice to die, I think had the parents been given guardianship for her care, there would have been a much happier outcome. She could have gotten therapy and could have possibly improved over time. Sa commentary of our society when the best interests of the daughter were really the parent's concern and they would have done anything they could to have provided that care for her. He wouldn't have lost anything ,if he turned over the care to the parents. Unfortunately courts don't often to see the "light" of things. I really do believe the parents were the best people to oversee her care. Laws don't always take those things into consideration. Just watching those videos, reveals alot of things, she truly needed the people who cared for her truly. Not someone who just wanted to dump in her in some hospice without any hope of recovery.Her family was her lifeline, her support. Sometimes what I think of as the tragedy is with the courts, they don't seem to take any of these things into consideration, they go by the "rule of the law" , without considering people's feelings and their intentions and motives.

[Progo35]

I can only hope that in her last days on earth, God made himself an ever present source of strength and peace, and perhaps shielded her from some of the unbearable pain she must otherwise have suffered

[ladyinred]

Progo I read somewhere that her husband had Terry's cat euthanized as well as other things. It doesn't sound like thi s guy was on the up and up . Just from his actions, from what I read he sounds very suspicious, like he had something to hide, if what I read is true. I googled several sites about the cat thing and they all say the same thing. Also from my undestanding of controlling men, they can be capable of some pretty horrendous things.I've read quite alot on this, and about narcisstic personalities.If everything I've read about him is true, He fits the profile. If there wasn't an investigation into this man's backround, and Terry's situation , there should have been. I think the malpractice suit was probably unwarranted and there should have been an invstigation into that, it doesn't seem to me that the doctors were responsible. Also they said that Terry suffered from bulimia , could they substantiate this ,was she going through a rapid weight loss at the time, and how much did she weigh at the time she was admitted into the hospital and being treated. I do know about anorexia and somewhat about bullimia.. But I was just curious as to whether the family noticed anything like this.

[Progo35]

I absolutely agree with everything you've said, LIR. This, and other serious attrocities that continue to happen across the world, are examples of the rampant and virulent prejudice that will continue subjegating disabled people if nothing is done about it. That is why I hope that other minority communities, like the LBGT population, will begin to speak out on behalf of the disabled and vice versa.

[Progo35]

http://www.youtube.com/watch?v=meE-jfKCvbs

[ladyinred]

http://www.braininjury.com/amazingrecoveries-stories.html

[Progo35]

Hey, Lir,

I forgot to thank you for posting this link: what great stories!

[Progo35]

http://www.inclusiondaily.com/archives/04/07/13.htm