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I might be in Terri's bed soon…
The Daily Telegraph ^ | 27/03/2005 | Harriet McBryde Johnson

Posted on 03/26/2005 9:28:06 PM PST by ScaniaBoy

Edited on 03/26/2005 9:46:27 PM PST by Sidebar Moderator. [history]

The Terri Schiavo case is hard to write about, hard to think about. Those films are hard to look at. I see that face, maybe smiling, maybe not, and I am reminded of a young woman I knew as a child, lying on a couch, brain-damaged, apparently unresponsive, yet deeply loved, living proof of one family's no-matter-what commitment.

I watch nourishment flowing into a slim tube that runs through a neat, round, surgically created orifice in Ms Schiavo's abdomen, and I'm almost envious. What effortless intake! Due to a congenital neuro-muscular disease, I am having trouble swallowing, and it's a constant struggle to get by mouth the calories my skinny body needs. For whatever reason, I'm still trying, but I know a tube is in my future. So, possibly, is speechlessness. That's a scary thought. If I couldn't speak for myself, would I want to die? If I become uncommunicative, a passive object of other people's care, should I hope my brain goes soft and leaves me in peace?

My emotional response is powerful, but at bottom it's not important. It's no more important than anyone else's, not what matters. The things that ought to matter have become obscured in our communal clash of gut reactions. Here are 10 of them:

1. Ms Schiavo is not terminally ill. She has lived in her current condition for 15 years. This is not about end-of-life decision-making. The question is whether she should be killed by starvation and dehydration.

2. Ms Schiavo is not dependent on life support. Her lungs, kidneys, heart, and digestive systems work fine. Just as she uses a wheelchair for mobility, she uses a tube for eating and drinking. Feeding Ms Schiavo is not difficult, painful, or in any way heroic. Feeding tubes are a very simple piece of adaptive equipment, and the fact that Ms Schiavo eats through a tube should have nothing to do with whether she should live or die.

3. This is not a case about a patient's right to refuse treatment. I don't see eating and drinking as "treatment", but even if they are, everyone agrees that Ms Schiavo is presently incapable of articulating a decision to refuse treatment. The question is who should make the decision for her, and whether that substitute decision-maker should be authorised to kill her by starvation and dehydration.

4. There is a genuine dispute as to Ms Schiavo's awareness and consciousness. But if we assume that those who would authorise her death are correct, Ms Schiavo is completely unaware of her situation and therefore incapable of suffering physically or emotionally. Her death thus can't be justified for relieving her suffering.

5. There is a genuine dispute as to what Ms Schiavo believed and expressed about life with severe disability before she herself became incapacitated; certainly, she never stated her preferences in an advance directive like a living will. If we assume that Ms Schiavo is aware and conscious, it is possible that, like most people who live with severe disability for as long as she has, she has abandoned her preconceived fears of the life she is now living. We have no idea whether she wishes to be bound by things she might have said when she was living a very different life. If we assume she is unaware and unconscious, we can't justify her death as her preference. She has no preference.

6. Ms. Schiavo, like all people, incapacitated or not, has a federal constitutional right not to be deprived of her life without due process of law.

7. In addition to the rights all people enjoy, Ms Schiavo has a statutory right under the Americans with Disabilities Act not to be treated differently. Obviously, Florida law would not allow a husband to kill a non-disabled wife by starvation and dehydration; killing is not ordinarily considered a private concern or a matter of choice. It is Ms Schiavo's disability that makes her killing different in the eyes of the Florida courts. Because the state is overtly drawing lines based on disability, it has the burden under the ADA of justifying those lines.

8. In other contexts, federal courts are available to make sure state courts respect federally protected rights. This review is critical not only to the parties directly involved, but to the integrity of the legal system. Federalism requires that the federal government, not the states, have the last word. When the issue is the scope of a guardian's authority, it is necessary to allow other people, in this case other family members, to file a legal challenge.

9. The whole society has a stake in making sure state courts are not tainted by prejudice and unfounded fears - like the unthinking horror in mainstream society that transforms feeding tubes into fetish objects, emblematic of broader deeper fears of disability that sometimes slide from fear to disgust and from disgust to hatred. While we should not assume that disability prejudice tainted the Florida courts, we cannot assume that it did not.

10. Despite the unseemly Palm Sunday pontificating in Congress, the legislation enabling Ms Schiavo's parents to sue did not dictate that Ms Schiavo be fed. It simply created a procedure whereby the federal courts could decide whether her rights have been violated.

In the Senate, a key supporter of a federal remedy was Tom Harkin, a Democrat and friend of labour and civil rights, including disability rights. Harkin told reporters: "There are a lot of people in the shadows, all over this country, who are incapacitated because of a disability, and many times there is no one to speak for them, and it is hard to determine what their wishes really are or were. So I think there ought to be a broader type of a proceeding that would apply to people in similar circumstances who are incapacitated."

I hope I will never be one of those people in the shadows, that I will always, one way or another, be able to make my wishes known. I hope that I will not outlive my usefulness or my capacity (at least occasionally) to amuse the people around me. But if it happens otherwise, I hope whoever is appointed to speak for me will be subject to legal constraints. Even if my guardian thinks I'd be better off dead - even if I think so myself - I hope to live and die in a world that recognises that killing, even of people with the most severe disabilities, is a matter of more than private concern.

Clearly, Congress's Palm Sunday legislation was not the "broader type of proceeding" Harkin and I want. It does not define when and how federal court review will be available to all of those in the shadows, but rather provides a procedure for one case only. To create a general system of review, applicable whenever life-and-death decisions intersect with disability rights, will require a reasoned, informed debate unlike what we've had until now. It will take time. But in the Schiavo case, time is running out.

• Harriet McBryde Johnson is a disability-rights lawyer based in South Carolina. Her memoir in stories, Too Late to Die Young: Nearly True Tales from a Life, will be released in April. This article first appeared in Slate Magazine, www.slate.com.


TOPICS: Constitution/Conservatism; Culture/Society
KEYWORDS: clintonappointed; clintonjudges; coma; euthanasia; keyword1yrlater; neverforget; pvs; schiavo; seewhatevilcando; terri; terrischiavo
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Sorry if this has been published previously under another headline, but Ms McBryde Johnson makes some very pertinent comments.
1 posted on 03/26/2005 9:28:08 PM PST by ScaniaBoy
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To: ScaniaBoy
Terri Schiavo doesn't "need" a feeding tube. Nurses have testified that she can swallow stuff like pudding and water.

It is Michael Peterson Blake Schiavo who demanded she not be fed any other way than by a feeding tube.

2 posted on 03/26/2005 9:31:15 PM PST by Texas Eagle (If it wasn't for double-standards, Liberals would have no standards at all)
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To: Texas Eagle
You should add OJ to that list. Michael OJ Peterson Blake Schiavo?
3 posted on 03/26/2005 9:34:10 PM PST by concerned about politics (Vote Republican - Vote morally correct!)
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To: concerned about politics

Actually, I think Michael OJ Schiavo suffices perfectly.


4 posted on 03/26/2005 9:36:10 PM PST by Texas Eagle (If it wasn't for double-standards, Liberals would have no standards at all)
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To: Texas Eagle
Yes, I've read that too. And that is just one of many "strange facts" in this case.

However, I think Ms McBryde Johnson's points are valid whether Ms Schiavo has to be fed by a tube or not.
5 posted on 03/26/2005 9:36:43 PM PST by ScaniaBoy (Part of the Right Wing Research & Attack Machine)
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To: ScaniaBoy

A very powerful argument. Thanks for posting it.


6 posted on 03/26/2005 9:39:24 PM PST by cinnathepoet (Directly, I am going to Caesar's funeral)
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To: ScaniaBoy
I hadn't seen this before. Thanks for sharing it.

I was recently diagnosed with multiple sclerosis. Hopefully my illness will not progress to the point where I can not swallow or speak. But if it does I know for sure I do not want to starve.

This evil legal precedent threatens every one of us.

7 posted on 03/26/2005 9:42:51 PM PST by Moxie18
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To: ScaniaBoy

Making Terri's death very horrible is what the Hemlock doctors and lawyers will use to advance assisted suicide ala Kevorkian...

The culture of death will become as American as apple pie..

imo


8 posted on 03/26/2005 9:42:52 PM PST by joesnuffy (The generation that survived the depression and won WW2 proved poverty does not cause crime)
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To: ScaniaBoy
I find it interesting that ven after everything she wrote she still doesn't make her wishes fully known. The best she can come up with is, "...I hope whoever is appointed to speak for me will be subject to legal constraints. Even if my guardian thinks I'd be better off dead - even if I think so myself - I hope to live and die in a world that recognises that killing, even of people with the most severe disabilities, is a matter of more than private concern. "

And yet, Terri Schiavo's fate hangs on something she supposedly said in passing while watching a TV show with her husband.

9 posted on 03/26/2005 9:43:16 PM PST by Texas Eagle (If it wasn't for double-standards, Liberals would have no standards at all)
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To: ScaniaBoy

I wish she could have represented the Schindler's.


10 posted on 03/26/2005 9:48:23 PM PST by Collier
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To: ScaniaBoy

bttt

too upset to comment

except this

my wife who is a nurse says that she expects Terri will live and suffer for several more days, maybe even another week. she points out that Terri had a healthy body and weight. she had no damage to any vital organs, and was not known to have any infections.

its Easter Sunday already in the Holy Land, and most of the USA.

....


11 posted on 03/26/2005 9:53:23 PM PST by kralcmot (save us all, fight for Terri's right to Life)
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To: ScaniaBoy
Nurses have stated that after Michael would leave Terri's room she would be very upset, sometimes crying, wouldn't speak to anyone for hours. This is in addition to him shooting her up with regular insulin.

I think it would be safe to assume that he regularly used her as a verbal punching bag. Can you imagine laying in a bed, listening to the ravings of a man blaming you for messing up his life and you can not say a word back to him?

Yep, real fine fellow that skunk is.

12 posted on 03/26/2005 9:53:40 PM PST by Slyfox
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To: Texas Eagle
And yet, Terri Schiavo's fate hangs on something she supposedly said in passing while watching a TV show with her husband.

Today, Michaels brother said Terri and Michael discussed this together in the privacy of their own home, yet he and another testified they heard Terri say it. If it were a private, deliberate conversation, how did they hear it? Were they psychic????
Where did you hear it was in passing while they were watching TV? According to the brother, it was a serious conversation between the two.

Something about this whole thing really stinks. I believe most people, like with the OJ trial, can smell the evil.

13 posted on 03/26/2005 9:54:24 PM PST by concerned about politics (Vote Republican - Vote morally correct!)
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To: joesnuffy
Making Terri's death very horrible is what the Hemlock doctors and lawyers will use to advance assisted suicide ala Kevorkian... The culture of death will become as American as apple pie..

I expect to hear from Geoff Fieger and Dr Jack (I think he's still in prison) soon.

At least assisted suicide got its ass kicked back in 98 here in Michigan. Small consolation. 2,116,154 to 859,381. And one of those 859,000 has switched his position since then. He learned.

14 posted on 03/26/2005 10:00:36 PM PST by Dan from Michigan ("Mama, take this judgeship off of Greer, he can't use it, anymore")
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To: Texas Eagle
And yet, Terri Schiavo's fate hangs on something she supposedly said in passing while watching a TV show with her husband.

Hey, wait a minute, I thought they heard Terri say that she didn't want a feeding tube inserted into her when they were standing over the open grave when everyone was throwing dirt into it.

15 posted on 03/26/2005 10:02:24 PM PST by Slyfox
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To: ScaniaBoy

She makes excellent points.


16 posted on 03/26/2005 10:03:48 PM PST by FairOpinion
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To: ScaniaBoy

An elderly friend of the family is having s specialized shock treatment to overcome nerve damage which was preventing swallowing--not clear what the origin of the nerve damage was--came on fairly suddenly.

I think the shocks are no more than 25 milliamps and now half that. I forget how many sessions per week. Has made a world of difference for him.

Prayers,


17 posted on 03/26/2005 10:05:09 PM PST by Quix (HAVING A FORM of GODLINESS but DENYING IT'S POWER. 2 TIM 3:5)
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To: Texas Eagle

"Terri Schiavo doesn't "need" a feeding tube. "

BINGO! That is exactly why Greer ruled that nourishment and hydration be withheld, i.e. not feed her by ANY means, intead of merely order the removal of the feeding tube, and let Terri live, if she can take water and nourishment by mouth.

This is a point that is mostly lost, and this makes it an even more aggregious murder.


18 posted on 03/26/2005 10:06:04 PM PST by FairOpinion
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To: joesnuffy

"The culture of death will become as American as apple pie.. "


====

Unfortunately, you are right.


Somewhat related article:

Elder abuse spreading as population ages in California

http://www.freerepublic.com/focus/f-news/1371623/posts

"Elder abuse is often treated the way child abuse and domestic violence were handled until relatively recently, Wong said.

"Far too often it's been considered a family matter and not a crime," Osborn said. "

If they killed Terri, for being inconvenient, what do you think will happen as the baby boomers age?


19 posted on 03/26/2005 10:08:55 PM PST by FairOpinion
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To: concerned about politics
I've heard it many times on several radio and TV shows. Here is a link to an FR thread that alludes to it:

When his own wife, Terri, made a throwaway comment to him – or so he claims – that should she ever be reduced to a severely disabled state that she would wish to die, Schiavo ran to fulfill her request. Unlike the Reeves who were put in a similar situation, in this particular exchange between wife and husband there was never an attempt to encourage Terri to embrace life

http://www.freerepublic.com/focus/f-news/1368645/posts

20 posted on 03/26/2005 10:10:35 PM PST by Texas Eagle (If it wasn't for double-standards, Liberals would have no standards at all)
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