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]

Originally Posted by 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.

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_S...utopsy_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]

Originally Posted by 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.

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]

Originally Posted by Progo35

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]

Originally Posted by scott snedeker

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]

Originally Posted by Progo35

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]

Originally Posted by 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.

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!

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.