Not Dead Yet....

Is Terri Schiavo really an issue of a person with a disability being abused? I don’t tend to agree with that assignment to what’s happening with her. There are several clear differences that Not Dead Yet.org doesn’t address. They have some points I do agree with, but let’s get the reasons I don’t agree with them out of the way first.

Terri Schiavo is not conscious, nor has any credible physician ever stated she has any chance of recovering or even becoming conscious enough to function beyond basic body functions. She can’t communicate, can’t move on command and after years of aggressive rehabilitation there was no change noted.

I also believe their demands that only those who have put in writing a wish to discontinue life support including a g-tube could create numerous situations where that person is doomed to be kept alive against their wishes merely on the belief “they had time” to create a living will. Given that only 20% of Americans prior to this situation had living wills, that’s a huge number of people to make an assumption on.

Not Dead Yet made a gesture of civil disobedience for the cameras today in Florida. Not Dead Yet, which advocates for disabled rights, blocked one of the two entrances to the hospice that police have tried to keep clear. Half a dozen group members, all of whom have disabilities, slipped out of their wheelchairs and lay on the asphalt, singing songs. Police watched from a few feet away, but made no move to stop the civil disobedience, which disbanded about an hour later when most of the camera crews and reporters had drifted away.

It’s natural that groups wanting publicity attach themselves to the Schiavo bandwagon, after all Randall Terry has demonstrated that this is a great way to get not only media attention but money. Not Dead Yet showed us all today that it’s really not about Terri it’s about their desire for attention. Prior to their act of civil disobedience Bobby Schindler had asked all of the protestors to please stop, "We're not going to solve this problem today by getting arrested," Schindler told several of the most vocal protesters. After being confronted by some aggressive protestors from another group, Schindler shook his head and quietly said: "You're not speaking for our family by doing this." It was immediately after he asked this of the protestors that Not Dead Yet members did their performance for the camera.

Well it worked, they got media time and they were written about in several newspapers, and I am even writing about them. I understand some of their issues, especially when it comes to cuts in Medicaid and medicare, and when it comes to futile care laws.

They do as I said above have some valid concerns when it comes to what they feel is the attitude about Terri Schiavo, it might sound like I’m contradicting myself but I can understand why her death would cause a great deal of concern for them because of the way some things already are.

I’d suggest reading the below article, I’ve taken some points from it (though I will point out the claim stated there by Michael Schiavo to Larry King is a very “liberal” interpretation of what was said that evening) With the exception of that clarification, I think this gives us a very good insight into why they are concerned and why they feel they should attempt to get this out there as a media issue while they can.

It's not just about Terri anymore

This is what the Terri Schiavo circus is all about. We may think it's about political posturing -- and it is that, for sure. But it's about those of us who have scary, messy disabilities, and the fears of the rest of us.

The Texas Futile Care Law, which George W. enacted, gives hospitals the right to cut off life support. The progressive blogs are full of the story of the baby pulled off life support under that legislation this past week, against his mother's wishes. But futile care acts are in place in many states -- so common they aren't even controversial. Are we only upset about them when we see them used against a member of what we see as a traditionally oppressed group, and enacted by a man whose policies we detest? States with liberal governors have futile care policies in place as well. The disability rights movement has been worried about futile care policies for quite awhile -- but nobody else took notice. Until now.

The disability rights movement I cover is made up of individuals who themselves are living lives that they may not have been able to previously imagine. Individuals who can communicate only via technology -- who, without today's computers, might very well be thought to have little or no cognitive ability. Several of these people, in fact, contribute regularly to Ragged Edge Online. There are people who have experienced aphasia. There are people with brain injuries.

To these people, the case of Terri Schiavo looks very different.

They are particularly angered by the belief that Michael Schiavo knows what Terri Schiavo wants. "We didn't know what Terri wanted," Michael Schiavo told Larry King on Friday. "But this is what we want."

This isn't about Terri Schiavo anymore.

On New Year's Eve a few years back, 74-year-old Shirley Harrison's husband came into the hospital where she'd been brought after having a stroke. He shot her three times in the chest. News media reported it as a "mercy killing."

Three weeks after Nancy Draper's body was found in the freezer of their home, husband Larry Draper turned himself in to police, saying he killed his wife to end her suffering from multiple sclerosis. He received a reduced sentence.

Joseph Brosz, 84, apparently bludgeoned to death Sylvia Brosz, 56, described as his "mentally and physically disabled daughter."

And we all remember Jack Kevorkian, and those who thought the man was doing good. Many of us still think that.

Villanova University history professor Mine Ener used a 12-inch kitchen knife to slice the throat of her daughter, 6-month-old Raya Donagi, who had Down syndrome.

Firefighters responding to a house fire in Elwood, Indiana found the burned body of 8-year-old Mark Adrian Norris II. Autopsy results confirmed that Mark, who had cerebral palsy and epilepsy, had actually died the day before -- of malnourishment and neglect. His mother was not charged with murder.

And in England last month, the news was full of the trial of military security specialist Andrew Wragg, who told police he killed his 10 year old son, Jacob, because he was frustrated that his son was no longer able to recognize and communicate with him. Jurors were told he was embarrassed at having a son with a disability.

Yesterday's Ukiah (CA) Daily Journal reported that elder abuse is on the rise - reports of elder abuse rival those of spouse abuse. And families are responsible for most of the deaths of disabled people who are dead by unnatural means.

So while there is a part of me that disagrees with them on part of their statements, there is the more common sense side that sees they have some very valid issues and it’s obvious not many were listening to them. Which is why I wrote this today, even for those of you who do not agree with what is happening with Terri Schiavo; these people are alive and want you to know they have some serious valid concerns that should be addressed. It shouldn't take something like the situation with Terri Schiavo for us to listen, but now that they have our attention? Let's do something.....

Not Dead Yet.org's website