March 31, 2005

Taking The Moral Low Ground

Terri died today, bringing to final closure a hopeless situation that, had it not happened under the glare of the TV cameras, to people whose tragic need was shamelessly fed by those who prostituted themselves by saying anything and everything to support the Schindlers in front of the cameras and in court, would have ended long ago.

After Terri's death, President Bush said, "The case of Terri Schiavo raises complex issues. Yet in instances like this one, where there are serious questions and substantial doubts, our society, our laws, and our courts should have a presumption in favor of life. Those who live at the mercy of others deserve our special care and concern. It should be our goal as a nation to build a culture of life, where all Americans are valued, welcomed, and protected - and that culture of life must extend to individuals with disabilities."

U.S. House Majority Leader Tom DeLay said, "the men responsible for this" will be called to account." He went on to say that lawmakers "will look at an arrogant and out of control judiciary that thumbs its nose at Congress and the President."


It is long past time for this country to stop sending trillions of dollars in aid to other countries when our own citizens are being denied adequate food, clean water, access to necessary health care, treatment and medications, and decent housing affordable to those who rely on social security disability and Medicaid.


It is long past time for this country to stop sending trillions of dollars in aid to other countries when our own children are going to schools in substandard facilities, overcrowded classrooms, without the necessary text books, equipment and supplies.

(And let's talk about teachers salaries, shall we? Unless and until we start paying teachers enough to entice the good ones to stay in the school system as teachers, and supply them with the materials they need for their classroom and students so that they are not paying for classroom supplies out of their own meager paychecks, we deprive our children—our future—of the skills and tools they need to move us forward into that future.)

Mr. Delay, why not instead look at the arrogant and out of control Congress and others who arrogantly thumb their nose at the people they are supposed to be representing in this country.

Yes, Mr. President, it should be our goal as a nation to build a culture of life, where all Americans are valued and protected, including those with disabilities.

So, why does your Administration keep cutting benefits? Why has no Administration doing nothing to ensure increased funding for Social Security, Medicare, and Medicaid, instead of less? Why do we keep giving trillions of dollars to those outside of the U.S. when our own people are imperiled, becoming permanently disabled, with too many dying, for lack of necessary health care?

As tragic as Terri Schiavo's story is, hers is just one amongst many tragedies playing out in homes, hospitals, hospices, and on the streets each and every day.

Either you are serious about correcting the problems in the system created by politicians which affect the least empowered amongst us, or you are simply out to shamelessly use an individual to further your personal and party agenda.

March 28, 2005

In the beginning...

...there was writer's block.

I've been thinking about blogging for some time now, but life and health and distractions and problems arise, and so I end up writing about and doing other things, quashing down the rants and smartass remarks.

In the past week, as Terri Schiavo's existence winds down and the airwaves ring with the bullshit from people who apparently have no problem displaying their incredible ignorance and total aversion to the facts, I have been moved to write.

My heart goes out to the Schiavo and Schindler families. Having lost a sister and a husband to cancers, I do have some idea of what they are individually going through. I also watched my mother try to cope with the devastation she felt after my sister died, at age 33, at the end of an increasingly desperate three year battle against leukemia.

I understand Terri's parents' deep hope that by some miracle their daughter's brain will somehow reconstitute itself and do more than provide basic brainstem function. But, as Dan Abrams says, barring Divine intervention, it won't. And, frankly, it seems to me that if God was so inclined to change things, He'd have done it by now.

[Why this hasn't occurred to all the good Christians out there demonstrating in front of the hospice and threatening Michael Schiavo's life, I can't say, other than it is hardly surprising, given the fact that thinking is barely even a recessive trait among the vast majority of fundamentalists whatever their fundament.]

[And don't even get me started on the impact these good Christians are having on the other patients in the hospice, nor on the family members of those patients whose ability to get in and see their loved ones is severely hampered by what can only be called a mob.]

I understand the need to find some meaning in the random eye movements, the apparent response to a hovering face, a change in the room light, a sound. I understand the need to believe that it is the Terri-that-was behind the facial muscle movements. But it is not the Terri-that-was that causes her eyes to sightlessly move around, nor her lips to move occasionally into a grimace that is construed by desperate hearts to be a smile of recognition.

There is a poem I came across shortly before my sister died that I read at her funeral. The last two lines are:

Do not stand at my grave and cry

I am not there. I did not die.

Terri is not there. The essence of Terri was destroyed years ago, as documented by numerous scans and tests and in-person evaluations through the past decade that led the judges in 20 hearings to find that she did not want her body to be kept alive.

I am appalled at the cost of this fruitless, needless, harmful battle...a cost being borne by the public. I am infuriated at the thought of all the people who would benefit from having that money and advocacy focused on them instead of the Terri-that-is, whose brain scan shows all too clearly--for those who would actually look--that there is nothing there.

I think of people like Julia C. In her sixties, she has been battling several degenerative illnesses and cancer. She lives, as many do, in a county with too little affordable housing, too little subsidized housing, and 3+ year waiting lists for what little exists. She lives in a tiny, decrepit, moldy rental unit, with Medi-Cal [Medicaid] not covering a fraction of the health care services and medications she needs.

She used to have a few in-home support hours each week, for someone to come in and do light cleaning, food preparation, and take her to the market, doctors appointments, and other essential errands. But the increasingly strapped in-home support services agency decided that she didn't need any help at all.

Oh. Wait. Did I forget to mention that she is legally blind? That SSI doesn't provide enough to pay her basic needs, let alone cab fare? Yes, there are "volunteer wheels" in the county, but with too little funding, too few vehicles and volunteers to provide services to all the disabled and elderly here who need them. Of course, IHSS doesn't really care: knowing that she should not be driving, they nonetheless withdrew late last year what few hours they had previously left her.

And then there is Sophia. Not every person living in their car wants to be there. Not everyone living in ratty transient motels wants to be there. Sophia, after being bounced from co-housing to co-housing because of her chemical sensitivities and insensitive co-residents, ended up spending over a month in the hospital. After another round of chemical assaults, she now draws advances on her social security disability check to pay the week-to-week at Motel 6.

There was a woman on the Today show last week who claims that her dog says, "I love you." To demonstrate, she gave the vocal and facial cues her dog responds to. While the woman was hearing "I love you", it clearly looked like everyone else within ear- and camera-shot had the same reaction I did: All I heard was the dog saying "Rrrroooooo awooooooo wooo wooo awooooooooooooo" as the woman kept repeating, over and over, "I love you. Say, I love you!"

Wishing things were so don't make them so. Hoping for the impossible is fine if you don't stop living your life waiting for the impossible to happen.

Terri's life was over long ago. Let her go. It's time for the Schindlers to start living again, and for everyone else to go help those in their communities who truly need it.


For those who are not familiar with the work of hospices and end-of-life care, please learn about them. You will find links to several excellent organizations in the End of Life section of my CND Resources site.

February 1, 2006 Update: Michael Schiavo has formed, a political action committee whose goal is to make sure the politicians who voted to interfer in his wife's dying know that that is not a decision the American people want them making, and to continue to hammer home the need for people to make their wishes clear by signing and distributing a Living Will that specifically states what they do and do not want done.