Sometimes I get email from old skool readers asking why I don't write about politics anymore.
I don't know. I guess I usually just find it easier to stick my finger down my throat...
Showing posts with label politics and my socialist heart. Show all posts
Showing posts with label politics and my socialist heart. Show all posts
October 17, 2007
July 20, 2007
Programming
Julie has been busy lately, working on last minute Harry Potter preparations for the book store where she works as a community relations monkey, so Schuyler and I have been spending a lot of alone time together these days.
Last night Schuyler and I curled up on the couch, just the two of us, and it would have been a really sweet picture if you were to peek in through the window and see us there. I'm not sure if you'd still get the same Normal Rockwell vibe, however, if you could see that we were watching Godzilla versus Space Godzilla.
After it was over, we changed into our sleep clothes and stomped around the living room, destroying imaginary Tokyo and attacking each other. Schuyler stopped in her rampage every now and then to open her mouth menacingly and breath imaginary Godzilla fire, although she ruined the effect by cracking herself up and giggling. Well, that and also by being a four foot tall little girl in very un-monstery Hello Kitty pajamas.
I was driving her to her summer program this morning when she suddenly called out excitedly, pointing out the car window.
"Ah-ee, oo! Eh UH!"
I followed where she was pointing and saw a police car, and that's when I realized what she was saying.
"Daddy, look! The FUZZ!"
"Is that the Fuzz?" I asked. She squealed with delight and clapped her hands at our (until now) private joke.
Judge me if you must for the things I end up teaching Schuyler, both intentionally and otherwise. We're like any parents, we pick our battles carefully, based on our own beliefs and the values we feel are important to pass down. Even if sometimes those values involve nothing more than being a smartass. Especially then, perhaps.
We'll watch some pretty questionable television sometimes, for example. Jurassic Park II: The Lost World was on last week, and I've never seen Schuyler's eyes as wide with wonder as when she watched a T-Rex walking down a quiet suburban street and into a back yard, drinking from the swimming pool and looking into a kid's bedroom window. I can't even begin to imagine how happy she would be to look out her own window to such a sight.
But after one too many trips to the bookstore when she ran straight to the Disney and Barbie sections as if there were no other conceivable book in the world, we stopped letting her watch shows that seem to be little more than merchandise disguised as educational television. So yes to rampaging dinosaurs eating the family dog, but no more Dora the Explor-ahTM.
She knows that hitting and pushing other kids is wrong, but also that she's got the right to be anywhere anyone else is, with her Big Box of Words by her side. Schuyler knows that when other kids get bossy and start telling everyone what to do, there is no greater fun to be had than to cheerfully break those rules. She wears the punky clothes that she wants, with camouflage and little bead bracelets with pink skull-and-crossbones and red hair that exists nowhere in nature, but she also knows that short shorts and the slutty Bratz attire that is so popular with the North Dallas second grade set these days (WTF?) isn't going to happen, and it's not even worth putting up a fight.
She knows nothing about Jesus (as far as we're concerned, she already has plenty of imaginary friends), and isn't going to find out more until she's old enough to make the distinction between what's fact and what's opinion. She's trusting in a very unsophisticated way at this stage; she will take whatever she is told and process it as Truth-with-a-big-T, and we feel better about her believing in Santa and King Kong and monsters right now. The difference is that fewer people will be insisting that they are real as she gets older, and she's not ever going to be pressured to live her life a certain way because someone told her that it's Godzilla's will.
Most of all, Schuyler has inherited a "Fight the Man" attitude that she is going to need as she gets older and takes on more of her own battles for equal treatment and adequate concessions for her life in a mainstream society.
Being who she is, however, Schuyler infuses that attitude with a charm that her father has never possessed. As we pulled away from the police car this morning, she smiled, gave him a wave, and said "Eye, uh!"
"Bye, Fuzz!"
Last night Schuyler and I curled up on the couch, just the two of us, and it would have been a really sweet picture if you were to peek in through the window and see us there. I'm not sure if you'd still get the same Normal Rockwell vibe, however, if you could see that we were watching Godzilla versus Space Godzilla.
After it was over, we changed into our sleep clothes and stomped around the living room, destroying imaginary Tokyo and attacking each other. Schuyler stopped in her rampage every now and then to open her mouth menacingly and breath imaginary Godzilla fire, although she ruined the effect by cracking herself up and giggling. Well, that and also by being a four foot tall little girl in very un-monstery Hello Kitty pajamas.
I was driving her to her summer program this morning when she suddenly called out excitedly, pointing out the car window.
"Ah-ee, oo! Eh UH!"
I followed where she was pointing and saw a police car, and that's when I realized what she was saying.
"Daddy, look! The FUZZ!"
"Is that the Fuzz?" I asked. She squealed with delight and clapped her hands at our (until now) private joke.
Judge me if you must for the things I end up teaching Schuyler, both intentionally and otherwise. We're like any parents, we pick our battles carefully, based on our own beliefs and the values we feel are important to pass down. Even if sometimes those values involve nothing more than being a smartass. Especially then, perhaps.
We'll watch some pretty questionable television sometimes, for example. Jurassic Park II: The Lost World was on last week, and I've never seen Schuyler's eyes as wide with wonder as when she watched a T-Rex walking down a quiet suburban street and into a back yard, drinking from the swimming pool and looking into a kid's bedroom window. I can't even begin to imagine how happy she would be to look out her own window to such a sight.
But after one too many trips to the bookstore when she ran straight to the Disney and Barbie sections as if there were no other conceivable book in the world, we stopped letting her watch shows that seem to be little more than merchandise disguised as educational television. So yes to rampaging dinosaurs eating the family dog, but no more Dora the Explor-ahTM.
She knows that hitting and pushing other kids is wrong, but also that she's got the right to be anywhere anyone else is, with her Big Box of Words by her side. Schuyler knows that when other kids get bossy and start telling everyone what to do, there is no greater fun to be had than to cheerfully break those rules. She wears the punky clothes that she wants, with camouflage and little bead bracelets with pink skull-and-crossbones and red hair that exists nowhere in nature, but she also knows that short shorts and the slutty Bratz attire that is so popular with the North Dallas second grade set these days (WTF?) isn't going to happen, and it's not even worth putting up a fight.
She knows nothing about Jesus (as far as we're concerned, she already has plenty of imaginary friends), and isn't going to find out more until she's old enough to make the distinction between what's fact and what's opinion. She's trusting in a very unsophisticated way at this stage; she will take whatever she is told and process it as Truth-with-a-big-T, and we feel better about her believing in Santa and King Kong and monsters right now. The difference is that fewer people will be insisting that they are real as she gets older, and she's not ever going to be pressured to live her life a certain way because someone told her that it's Godzilla's will.
Most of all, Schuyler has inherited a "Fight the Man" attitude that she is going to need as she gets older and takes on more of her own battles for equal treatment and adequate concessions for her life in a mainstream society.
Being who she is, however, Schuyler infuses that attitude with a charm that her father has never possessed. As we pulled away from the police car this morning, she smiled, gave him a wave, and said "Eye, uh!"
"Bye, Fuzz!"
July 6, 2007
It's good to be the king.
When I posted excerpts from the Declaration of Independence the other day, I left out the middle part, the whole "here's what the king did to piss us off" section. In doing so, I left out the two best lines:
He has dissolved Representative Houses repeatedly, for opposing with manly firmness of his invasions on the rights of the people.
and...
He has erected a multitude of New Offices, and sent hither swarms of Officers to harass our people and eat out their substance.
I know. I really need to grow up. Don't think I'm not aware of that.
--
"Okay guys, one more thing, this summer when you're being inundated with all this American bicentennial Fourth Of July brouhaha, don't forget what you're celebrating, and that's the fact that a bunch of slave-owning, aristocratic, white males didn't want to pay their taxes."
-- Dazed & Confused (1993)
He has dissolved Representative Houses repeatedly, for opposing with manly firmness of his invasions on the rights of the people.
and...
He has erected a multitude of New Offices, and sent hither swarms of Officers to harass our people and eat out their substance.
I know. I really need to grow up. Don't think I'm not aware of that.
--
"Okay guys, one more thing, this summer when you're being inundated with all this American bicentennial Fourth Of July brouhaha, don't forget what you're celebrating, and that's the fact that a bunch of slave-owning, aristocratic, white males didn't want to pay their taxes."
-- Dazed & Confused (1993)
July 4, 2007
The Fourth
In CONGRESS, July 4, 1776.
The unanimous Declaration of the thirteen united States of America,
When in the Course of human events, it becomes necessary for one people to dissolve the political bands which have connected them with another, and to assume among the powers of the earth, the separate and equal station to which the Laws of Nature and of Nature's God entitle them, a decent respect to the opinions of mankind requires that they should declare the causes which impel them to the separation.
The Fourth of July can inspire mixed feelings with some, particularly for people like myself who have lost faith in our government and who don't hold up much hope of regaining that faith, even if the White House changes parties in the next election. If anything, a Democratic administration might very well damage our faith even more; I may be appalled at the immorality and shamelessness of the Bush Administration, but I'm never surprised, and I don't reel particularly betrayed. Some people are fond of saying that Bush is not their president, completely missing the point that he decided they weren't his constituents long ago.
And yet for me, Independence Day has a certain magic to it because I still have immense pride in being an American. Fourth century Romans could see the end coming, but that didn't stop them from recognizing what a remarkable achievement their very existence had been to the world. One can love with open eyes; what hope is there for any of us otherwise?
We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the pursuit of Happiness.
That to secure these rights, Governments are instituted among Men, deriving their just powers from the consent of the governed, That whenever any Form of Government becomes destructive of these ends, it is the Right of the People to alter or to abolish it, and to institute new Government, laying its foundation on such principles and organizing its powers in such form, as to them shall seem most likely to effect their Safety and Happiness.
Prudence, indeed, will dictate that Governments long established should not be changed for light and transient causes; and accordingly all experience hath shewn, that mankind are more disposed to suffer, while evils are sufferable, than to right themselves by abolishing the forms to which they are accustomed. But when a long train of abuses and usurpations, pursuing invariably the same Object evinces a design to reduce them under absolute Despotism, it is their right, it is their duty, to throw off such Government, and to provide new Guards for their future security.
The main reason I love this day so much is simple. Independence Day isn't about the bravery of Minutemen, George Washington on a horse, or the rockets' red glare. It doesn't celebrate the beginning of the Revolutionary War, but rather the signing of the Declaration of Independence. The Fourth of July celebrates nothing less than the power of words to change the world.
The words to the declaration have become so familiar, celebrated in marble and in textbooks, that it's easy to forget just how dangerous and seditious they really were at the time. The men who wrote them and signed their names were outlaws, and the cost to them could have been their very lives. They were writers and thinkers, and the power contained in their words, as well as the clever spin that gave their fellow colonists a deranged king as a villain rather than a faceless parliament, convinced a bunch of farmers and tradesmen to take up arms against the most powerful nation on earth. Those words changed the course of world history.
Guns and bombs and blood and bravery and sacrifice, all set in motion by pen to paper, and by minds at work. At the beginning of almost every world changing event, you'll find someone scribbling furiously, typing without pause, or speaking passionately to a gathering crowd.
Those of us who consider ourselves writers need to remember how our words can move the hearts of our fellow citizens of the world.
We, therefore, the Representatives of the united States of America, in General Congress, Assembled, appealing to the Supreme Judge of the world for the rectitude of our intentions, do, in the Name, and by Authority of the good People of these Colonies, solemnly publish and declare, That these united Colonies are, and of Right ought to be Free and Independent States; that they are Absolved from all Allegiance to the British Crown, and that all political connection between them and the State of Great Britain, is and ought to be totally dissolved; and that as Free and Independent States, they have full Power to levy War, conclude Peace, contract Alliances, establish Commerce, and to do all other Acts and Things which Independent States may of right do. And for the support of this Declaration, with a firm reliance on the protection of divine Providence, we mutually pledge to each other our Lives, our Fortunes and our sacred Honor.
May 28, 2007
Memorial Day, 2007
Futility
Move him into the sun--
Gently its touch awoke him once,
At home, whispering of fields unsown.
Always it awoke him, even in France,
Until this morning and this snow.
If anything might rouse him now
The kind old sun will know.
Think how it wakes the seeds--
Woke, once, the clays of a cold star.
Are limbs so dear-achieved, are sides
Full-nerved,--still warm,--too hard to stir?
Was it for this the clay grew tall?
--O what made fatuous sunbeams toil
To break earth's sleep at all?
Wilfred Owen (1893 - 1918)
April 20, 2007
Another Inconvenient Truth
Before the fluttering of TV-ready flags and the patriotic, outraged sputtering gets too loud for anyone to think clearly, let's hear it once straight up.
The thumping has already begun, the wailing of "They don't support the troooooops!", and if past experience is any indication, the Democrats will soon be issuing "clarifications" about what the senator really meant and trying to water down what was actually a much-needed stiff drink.
So before Senator Reid ascends the wobbly tower of public relations Jell-o, let me throw in my own opinion.
He's right. The war is lost.
It was lost long ago. Maybe from the very first day.
It wasn't lost by the troops. It was lost very much in spite of the troops.
It was lost by old men in Washington, D.C.
If they can resist the indignant cries from that small but loud percentage of the extreme right who would unconditionally support the president even if he shot up a college campus or ate a puppy on television, the Democrats might just turn back into a party with some measure of leadership.
They just need to know one thing most of all. Here's that thing, the one they might not completely know because no one on either side of the aisle seems to be able to hear the voice of the People (with a big P) very clearly,
We already know the war is lost.
We may be stupid, easily distracted, American Idol-watching children, but we know the war is lost. Speak what's true, and we'll listen, we'll listen because we already know it, even if we're not all ready to say it. We need leaders to say it and to actually lead us out of the dark.
I've had my heart broken in the past by Democrats who stood up and spoke hard truths, only to weasel and wiggle back across the line when the heat got turned up. But even knowing how it usually turns out, I do still so love that brief moment when the party of my idealistic youth stands up like an aging bull ready to take one last futile stab at the matador, forgetting for just that moment of clarity to fear the butcher's block and the Hamburger Helper yet to come.
Support the troops with more than a ribbon magnet on your SUV. Get our people out of there.
"I believe myself that the secretary of state, secretary of defense and -- you have to make your own decisions as to what the president knows -- (know) this war is lost and the surge is not accomplishing anything as indicated by the extreme violence in Iraq yesterday."
-- Senate Majority Leader Harry Reid, April 19, 2007
The thumping has already begun, the wailing of "They don't support the troooooops!", and if past experience is any indication, the Democrats will soon be issuing "clarifications" about what the senator really meant and trying to water down what was actually a much-needed stiff drink.
So before Senator Reid ascends the wobbly tower of public relations Jell-o, let me throw in my own opinion.
He's right. The war is lost.
It was lost long ago. Maybe from the very first day.
It wasn't lost by the troops. It was lost very much in spite of the troops.
It was lost by old men in Washington, D.C.
If they can resist the indignant cries from that small but loud percentage of the extreme right who would unconditionally support the president even if he shot up a college campus or ate a puppy on television, the Democrats might just turn back into a party with some measure of leadership.
They just need to know one thing most of all. Here's that thing, the one they might not completely know because no one on either side of the aisle seems to be able to hear the voice of the People (with a big P) very clearly,
We already know the war is lost.
We may be stupid, easily distracted, American Idol-watching children, but we know the war is lost. Speak what's true, and we'll listen, we'll listen because we already know it, even if we're not all ready to say it. We need leaders to say it and to actually lead us out of the dark.
I've had my heart broken in the past by Democrats who stood up and spoke hard truths, only to weasel and wiggle back across the line when the heat got turned up. But even knowing how it usually turns out, I do still so love that brief moment when the party of my idealistic youth stands up like an aging bull ready to take one last futile stab at the matador, forgetting for just that moment of clarity to fear the butcher's block and the Hamburger Helper yet to come.
Support the troops with more than a ribbon magnet on your SUV. Get our people out of there.
March 2, 2007
"I'm leeeeavin' on a jet plane..."
I'm sitting in the airport, leaving for LA in about an hour. I'm excited and nervous. Excited because I've never been to California, and nervous because I'm attending a dinner meeting thing with some cool, high-powered industry people. I'd like to make an impression beyond "some fat yokel". Although, you know, I'll take that if I have to.
I talked to Kerry on my way to the airport, and he's crazy busy with his book promotion tour. He did twenty-eight interviews and radio show phone-ins yesterday. I suspect that's a nice problem to have. He sounds exhausted and a little flustered, but to be honest, he also sounds happy. Good for him.
As for me, I'm happy to be getting out of town for a few days.
That's it. What, you were waiting for something meaningful?
Um, okay, a quick political observation. In recent weeks, both Barack Obama and John McCain have referred to the deaths of American soldiers in Iraq as a "waste", and both have quickly backtracked when patriotic eyebrows began wiggling menacingly across this great land.
Two candidates for the presidency are soooooooooo close to showing the courage to speak the truth about the war, but in the end, both hedged. I am both heartened and disgusted. As for the Democratic Party, which called on McCain to apologize for using the term mere weeks after Obama did the exact same thing, WTF? Knee-jerk, safe politics are going to serve you exactly as well in the next presidential election as they did in the last two. Show us something better, if you can. Some integrity and ideological consistency might be a good place to start.
I watched the Bob Woodruff story on traumatic brain injuries last week, and it rejuvenated all my anti-war feelings in a way that I hadn't felt in a long time. I don't think I'm going to be able to vote for anyone of either party who has supported this war, certainly not within the past two years or so. That narrows my choice of candidates considerably, at least as the field stands now. Who knows what will happen in the coming months?
Wouldn't it be funny, after my notorious Nader "Green Days of Shame" of 2000, if I ended up voting for Al Gore?
Okay, time to fly. See you when I get to the land of the Beautiful People. I assume I will feel like Jabba the Hutt the whole time.
February 27, 2007
Chasing Justice
My friend Kerry Max Cook's book, Chasing Justice: My Story of Freeing Myself After Two Decades on Death Row for a Crime I Didn't Commit, hit the stores today. I'm listening to him on NPR's Diane Rehm Show right now. He's doing a great job, but then, his story is compelling, almost unbearably so. He's my friend; we hang out and take our kids to movies together, and yet when I look at him and watch him move through the world, I still can't grasp that he survived this experience and came through the other side.
Here's how HarperCollins describes his story:
Kerry Max Cook was convicted on the basis of some very dubious testimony by one witness (who described a person with an entirely different appearance) and a fellow prisoner who claimed that Kerry confessed the crime to him, despite the fact that Kerry was held in solitary confinement at the time. The evidence against Kerry consisted of a fingerprint on the victim's patio door. An "expert" for the prosecution testified that the fingerprint had been left during the time frame of the murder. Such a time-sensitive determination on a fingerprint is scientifically impossible; they might as well have consulted a psychic.
The Kerry Max Cook that I know seems so far away from that life. He's a warm father and playful husband with a quick sense of humor a wildly optimistic nature. He talks openly about his terrible story, but his eye is on the future.
In a few days, I'll be flying to Los Angeles to join Kerry for a big celebrity book party being thrown for him. I'll be there as his photographer, and as his friend. I hope his book does well, but more than that, I hope Kerry gets the life he deserves.
God knows, if anyone has paid in advance for happiness, it's Kerry Max Cook.
Here's how HarperCollins describes his story:
Wrongfully convicted of killing a young woman in Texas, Cook was sentenced to death in 1978 and served two decades on death row, in a prison system so notoriously brutal and violent that in 1980 a federal court ruled that serving time in Texas's jails was "cruel and unusual punishment." As scores of men around him were executed, Cook relentlessly battled a legal system that wanted him dead; meanwhile he fought daily to survive amid unspeakable conditions and routine assaults. When an advocate and a crusading lawyer joined his struggle in the 1990s, a series of retrials was forced. At last, in November 1996, Texas's highest appeals court threw out Cook's conviction, citing overwhelming evidence of police and prosecutorial misconduct.
And finally in the spring of 1999 long-overlooked DNA evidence was tested and it linked another man to the rape and murder for which Cook had been convicted. Today, Cook is a free man and the proud father of a young son.
Kerry Max Cook was convicted on the basis of some very dubious testimony by one witness (who described a person with an entirely different appearance) and a fellow prisoner who claimed that Kerry confessed the crime to him, despite the fact that Kerry was held in solitary confinement at the time. The evidence against Kerry consisted of a fingerprint on the victim's patio door. An "expert" for the prosecution testified that the fingerprint had been left during the time frame of the murder. Such a time-sensitive determination on a fingerprint is scientifically impossible; they might as well have consulted a psychic.
The Kerry Max Cook that I know seems so far away from that life. He's a warm father and playful husband with a quick sense of humor a wildly optimistic nature. He talks openly about his terrible story, but his eye is on the future.
In a few days, I'll be flying to Los Angeles to join Kerry for a big celebrity book party being thrown for him. I'll be there as his photographer, and as his friend. I hope his book does well, but more than that, I hope Kerry gets the life he deserves.
God knows, if anyone has paid in advance for happiness, it's Kerry Max Cook.
January 31, 2007
Sad day in Texas
Well, crap.
Molly Ivins has died, after a long battle with breast cancer.
Following as it does the death of Ann Richards, Molly's passing further thins the already shaky list of worth-a-shit Texans. When I think of her, I think of one of my favorite sayings. "Comfort the disturbed. Disturb the comfortable." It'll be harder work without her in the world.
January 30, 2007
Oh, who are the people in your neighborhood?
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December 22, 2006
Quality of Life
I was driving home today and listening to NPR, and a story came on about a young woman in Oklahoma named Misty Cargill who suffers from mild intellectual disability and abnormally small kidneys.
Misty Cargill needs a kidney transplant.
Out of 69,000 Americans on the waiting list for a kidney transplant, only about 16,000 will receive one this year. No one knows who will be next to get a kidney, but Misty knows it won't be her. She knows because she can't get on the list.
Because of her mental disability.
Misty Cargill was rejected from the list, despite the fact that she meets all the criteria for transplant. She's within the correct age and weight range, and aside from the fact that she will need a kidney very soon, she is otherwise in good health. She has Medicaid and is therefore able to pay for the operation and the follow-up anti-rejection medications. A patient must be capable of telling their doctors how they feel and of taking the medications that will prevent organ rejection. Cargill can do so; she's employed and lives in an assisted living community, where she lives mostly independently but with medical supervision.
But even though the state of Oklahoma considers Misty competent to make her own decisions, the Oklahoma University Medical Center transplant center rejected her referral on the grounds that she might not have the mental capacity to give informed consent to have the operation. They even went so far as to claim that her own doctors declared her incompetent to give informed consent, a claim denied by her personal physician and her kidney doctor, who say that she is a good candidate for transplant and could die without it.
In the story, an expert on developmental disabilities at Ohio State, Steven Reiss, said exactly what I was thinking: doctors appear to be making decisions based not on medical concerns, but a discriminatory "quality of life" judgment.
"There's thinking out there that some people's lives are more valuable than others," he said. "It's very hard to keep that thinking totally out of the transplant process."
One of the tests we have not put Schuyler through is a cognitive evaluation, an IQ test. There are plenty of good reasons not to and not really any compelling reasons to do so. She's receiving the services she needs in her school, above and beyond, in fact, so a test showing some sort of diminished cognitive capacity isn't going to help her get more help. More importantly, an IQ test administered on a non-verbal subject is extremely subjective and dependent upon the independent interpretive judgment of the test administrator. When we saw Dr. Dobyns in Chicago, he warned that such a test should only be administered by a qualified pediatric psychiatrist, and even then we should take the test results with a grain of salt.
I have no idea how profoundly Schuyler's cognitive abilities are affected by her monster, although my gut feeling (and those of the medical evaluators who have seen her before) is that her impairment is mild and probably due more to her communications difficulty and developmental delay than to her brain malformation.
Today, it suddenly became clear once again why we were correct not to have such a test administered to Schuyler, and why we likely never will. Today, I heard the story of Misty Cargill, a young woman who goes to a job and has a boyfriend who takes her to the movies and who bowls in a league and who can't get a life-saving procedure because someone somewhere has decided that she's retarded, and retards don't deserve to live as much as the rest of us. Today, I remembered the emails I have gotten, not many but a few, suggesting that Schuyler's class is a drain on the resources of the public schools, and that she and the other members of her box class should be institutionalized (and marginalized), not mainstreamed.
It's a hard, rough, shitty world for broken people. Don't you ever doubt that, not for a goddamned second.
Misty Cargill needs a kidney transplant.
Out of 69,000 Americans on the waiting list for a kidney transplant, only about 16,000 will receive one this year. No one knows who will be next to get a kidney, but Misty knows it won't be her. She knows because she can't get on the list.
Because of her mental disability.
Misty Cargill was rejected from the list, despite the fact that she meets all the criteria for transplant. She's within the correct age and weight range, and aside from the fact that she will need a kidney very soon, she is otherwise in good health. She has Medicaid and is therefore able to pay for the operation and the follow-up anti-rejection medications. A patient must be capable of telling their doctors how they feel and of taking the medications that will prevent organ rejection. Cargill can do so; she's employed and lives in an assisted living community, where she lives mostly independently but with medical supervision.
But even though the state of Oklahoma considers Misty competent to make her own decisions, the Oklahoma University Medical Center transplant center rejected her referral on the grounds that she might not have the mental capacity to give informed consent to have the operation. They even went so far as to claim that her own doctors declared her incompetent to give informed consent, a claim denied by her personal physician and her kidney doctor, who say that she is a good candidate for transplant and could die without it.
In the story, an expert on developmental disabilities at Ohio State, Steven Reiss, said exactly what I was thinking: doctors appear to be making decisions based not on medical concerns, but a discriminatory "quality of life" judgment.
"There's thinking out there that some people's lives are more valuable than others," he said. "It's very hard to keep that thinking totally out of the transplant process."
One of the tests we have not put Schuyler through is a cognitive evaluation, an IQ test. There are plenty of good reasons not to and not really any compelling reasons to do so. She's receiving the services she needs in her school, above and beyond, in fact, so a test showing some sort of diminished cognitive capacity isn't going to help her get more help. More importantly, an IQ test administered on a non-verbal subject is extremely subjective and dependent upon the independent interpretive judgment of the test administrator. When we saw Dr. Dobyns in Chicago, he warned that such a test should only be administered by a qualified pediatric psychiatrist, and even then we should take the test results with a grain of salt.
I have no idea how profoundly Schuyler's cognitive abilities are affected by her monster, although my gut feeling (and those of the medical evaluators who have seen her before) is that her impairment is mild and probably due more to her communications difficulty and developmental delay than to her brain malformation.
Today, it suddenly became clear once again why we were correct not to have such a test administered to Schuyler, and why we likely never will. Today, I heard the story of Misty Cargill, a young woman who goes to a job and has a boyfriend who takes her to the movies and who bowls in a league and who can't get a life-saving procedure because someone somewhere has decided that she's retarded, and retards don't deserve to live as much as the rest of us. Today, I remembered the emails I have gotten, not many but a few, suggesting that Schuyler's class is a drain on the resources of the public schools, and that she and the other members of her box class should be institutionalized (and marginalized), not mainstreamed.
It's a hard, rough, shitty world for broken people. Don't you ever doubt that, not for a goddamned second.
(UPDATE: Misty died in 2012, never having received her transplant.)
December 3, 2006
Comfort the disturbed.
I put a new sticker on my car, replacing all my snotty political dogma with my equally snotty socialist trouble-making dogma. To be honest, I no longer believe that either party is really concerned with the broken of our society. Both are fighting over the middle class and pandering to the super rich. Neither seem to be giving even the most rudimentary lip service to helping the poor or the displaced in this country.
I feel like I'm back in the Reagan 80s, when the President and Edwin Meese claimed that most street people chose their situation and went to soup kitchens because they didn't want to pay for their meals. At the time the Reagan Administration was making these claims, one third of the homeless were estimated to suffer from serious mental illness, another 25-50% had alcohol or drug abuse problems, and most of the rest were jobless or displaced by the gentrification of the inner cities -- the "new poor".
I don't think things have changed much, and I hear the same "get a job" or "giving to the homeless just perpetuates their situation" arguments now, from both predictable and surprising sources. Where does the solution begin? I don't have an answer. Between the sham of faith based initiatives, scandals within groups like the United Way and political indifference to a class of people who, after all, never vote, who is left to make a difference?
I have no idea how to fix the problem. All I know is that while we as communities and as a government are letting the poor and broken of this country fall through the cracks, as individuals we're touched, we feel, and in doing so, we reach out in our big-hearted and inefficient ways and we try to help. Remember the tsunami, or Katrina? Do you remember how feckless the government responses were but how generous the private citizens of this country showed themselves to be?
Imagine for a moment if our elected officials felt those same impulses of humanity and reached out with the full force of the nation to help those among us who don't vote and don't power the engines of commerce. Imagine the things we could do, not just in this country but also in Africa and Asia. Imagine how the people in parts of the world that hate us would feel when their villages began to get electricity and medicine, and American financial institutions began investing in microeconomics, not for their direct gain but in order to shrink the Third World a little. What if we had a New & Improved World Order, the central tenet of which might be "Let's get the whole world's shit together"?
I don't mean to be all John Lennon (or Karl Marx, for that matter) on you tonight. I know that I'm usually concerned with helping one person, one little girl who has a big problem but who also has a lot of people helping her and lifting her up. But the fact is that there are a lot of people out there who have no one, and they have problems that we can barely even comprehend. I've suffered from depression from time to time, and trust me, I know that a lot of you are frankly not always well in the head, bless your nutty little hearts. What if you had no safety margin? What if the next time you stumble, you lose it all?
I'm not sure why I'm writing this. It's cold outside. Maybe that's it. Just think about it, please.
Maybe I'll go help the poor of Plano. Oh, wait. Shit, I think that's us.
I feel like I'm back in the Reagan 80s, when the President and Edwin Meese claimed that most street people chose their situation and went to soup kitchens because they didn't want to pay for their meals. At the time the Reagan Administration was making these claims, one third of the homeless were estimated to suffer from serious mental illness, another 25-50% had alcohol or drug abuse problems, and most of the rest were jobless or displaced by the gentrification of the inner cities -- the "new poor".
I don't think things have changed much, and I hear the same "get a job" or "giving to the homeless just perpetuates their situation" arguments now, from both predictable and surprising sources. Where does the solution begin? I don't have an answer. Between the sham of faith based initiatives, scandals within groups like the United Way and political indifference to a class of people who, after all, never vote, who is left to make a difference?
I have no idea how to fix the problem. All I know is that while we as communities and as a government are letting the poor and broken of this country fall through the cracks, as individuals we're touched, we feel, and in doing so, we reach out in our big-hearted and inefficient ways and we try to help. Remember the tsunami, or Katrina? Do you remember how feckless the government responses were but how generous the private citizens of this country showed themselves to be?
Imagine for a moment if our elected officials felt those same impulses of humanity and reached out with the full force of the nation to help those among us who don't vote and don't power the engines of commerce. Imagine the things we could do, not just in this country but also in Africa and Asia. Imagine how the people in parts of the world that hate us would feel when their villages began to get electricity and medicine, and American financial institutions began investing in microeconomics, not for their direct gain but in order to shrink the Third World a little. What if we had a New & Improved World Order, the central tenet of which might be "Let's get the whole world's shit together"?
I don't mean to be all John Lennon (or Karl Marx, for that matter) on you tonight. I know that I'm usually concerned with helping one person, one little girl who has a big problem but who also has a lot of people helping her and lifting her up. But the fact is that there are a lot of people out there who have no one, and they have problems that we can barely even comprehend. I've suffered from depression from time to time, and trust me, I know that a lot of you are frankly not always well in the head, bless your nutty little hearts. What if you had no safety margin? What if the next time you stumble, you lose it all?
I'm not sure why I'm writing this. It's cold outside. Maybe that's it. Just think about it, please.
Maybe I'll go help the poor of Plano. Oh, wait. Shit, I think that's us.
November 8, 2006
An Important Message to Democrats, from an Independent voter and swell guy
Dear Democratic Party,
Please don't fuck this up.
Lovingly,
The Rob
Please don't fuck this up.
Lovingly,
The Rob
September 26, 2006
Best line: "A monkey posing as a newscaster..."
I've been staying away from politics for a while, mostly out of depression over the failure of the Democratic Party and the mainstream media to hold the Bush Administration accountable for its actions both before and since 9/11. But after watching Bill Clinton's spirited interview with Fox "News" talking head Chris Wallace, I felt something I hadn't felt in a while. I felt proud of a Democrat. Figures it would be one who's been out of office for five very long years.
I guess I'm not the only one who felt that way:
Keith Olbermann:
Finally tonight, a special comment about President Clinton's interview. The headlines about it are, of course, entirely wrong. It is not essential that a past President, bullied and sandbagged by a monkey posing as a newscaster, finally lashed back.
It is not important that the current President's portable public chorus has described his predecessor's tone as "crazed."
Our tone should be crazed. The nation's freedoms are under assault by an administration whose policies can do us as much damage as Al-Qaeda; the nation's marketplace of ideas is being poisoned, by a propaganda company so blatant that Tokyo Rose would've quit.
Nonetheless, the headline is this: Bill Clinton did what almost none of us have done, in five years. He has spoken the truth about 9/11, and the current presidential administration.
I guess I'm not the only one who felt that way:
Keith Olbermann:
Finally tonight, a special comment about President Clinton's interview. The headlines about it are, of course, entirely wrong. It is not essential that a past President, bullied and sandbagged by a monkey posing as a newscaster, finally lashed back.
It is not important that the current President's portable public chorus has described his predecessor's tone as "crazed."
Our tone should be crazed. The nation's freedoms are under assault by an administration whose policies can do us as much damage as Al-Qaeda; the nation's marketplace of ideas is being poisoned, by a propaganda company so blatant that Tokyo Rose would've quit.
Nonetheless, the headline is this: Bill Clinton did what almost none of us have done, in five years. He has spoken the truth about 9/11, and the current presidential administration.
August 2, 2006
Holy Crap, Revisited
To everyone out there who is shocked, SHOCKED, at the revelation that Mel Gibson...
...might just be a gigantic anti-Semite after all, I really don't have a lot to say to you, other than this.
Told you so.
"Fucking Jews... The Jews are responsible for all the wars in the world."
...might just be a gigantic anti-Semite after all, I really don't have a lot to say to you, other than this.
Told you so.
June 5, 2006
Update to Left Behind
Okay, maybe not so much.
When it comes to contemporary politics and particularly election shenanigans, it's impossible to know who to believe or where the truth lies.
Still, it's a relief to read that perhaps our election system isn't completely rotten.
I'm slightly more comfortable with the idea of a foolish electorate.
When it comes to contemporary politics and particularly election shenanigans, it's impossible to know who to believe or where the truth lies.
Still, it's a relief to read that perhaps our election system isn't completely rotten.
I'm slightly more comfortable with the idea of a foolish electorate.
June 4, 2006
Left Behind
I haven't written about politics in a long time, which some of you might think is a good thing. Furthermore, I doubt I'm going to start again any time soon. My politics haven't necessarily changed, I'm still the big liberal I always was. In fact, that's part of the problem. It's been a long time since I felt like the Democratic Party showed much interest in upholding any of its traditional progressive values, and I'm not sure I see things getting better any time soon. Lewis Black described the Republicans as the party of Bad Ideas, and the Democrats as the party of No Ideas.
And while I agreed that the 2000 election was ultimately decided by the Supreme Court rather than the will of the people, it was also clear to me and a lot of progressives that if not for the failings of the Democratic Party and Al Gore to capitalize on the peace and prosperity of the Clinton Administration, the election would have not only gone the other way, but wouldn't have even been all that close.
As for 2004? Another weak candidate who couldn't beat the worst president since the discovery of electricity, it seemed. It didn't make much sense, given how poorly George W. Bush had performed and how badly the war was going, but whatever. No one ever failed in business or politics by banking on the ridiculousness of the American public.
Well, turns out, the problem with the American voting public might not have been our decision to re-elect an apocalyptically bad president after all.
The problem might just have been our trust in the system and the assumption that our votes actually mattered.
Is this how the fall of Rome began? And when it happened, did the Romans actually give a damn?
And while I agreed that the 2000 election was ultimately decided by the Supreme Court rather than the will of the people, it was also clear to me and a lot of progressives that if not for the failings of the Democratic Party and Al Gore to capitalize on the peace and prosperity of the Clinton Administration, the election would have not only gone the other way, but wouldn't have even been all that close.
As for 2004? Another weak candidate who couldn't beat the worst president since the discovery of electricity, it seemed. It didn't make much sense, given how poorly George W. Bush had performed and how badly the war was going, but whatever. No one ever failed in business or politics by banking on the ridiculousness of the American public.
Well, turns out, the problem with the American voting public might not have been our decision to re-elect an apocalyptically bad president after all.
The problem might just have been our trust in the system and the assumption that our votes actually mattered.
Is this how the fall of Rome began? And when it happened, did the Romans actually give a damn?
May 29, 2006
Memorial Day 2006
For 14 hours yesterday I was at work -- teaching Christ to lift his cross by numbers, and how to adjust his crown; and not to imagine he thirst till after the last halt; I attended his Supper to see that there were no complaints; and inspected his feet to see that they should be worthy of the nails. I see to it that he is dumb and stands to attention before his accusers. With a piece of silver I buy him every day, and with maps I make him familiar with the topography of Golgotha.
Wilfred Owen, 1918 letter to Osbert Stilwell
-----
Allow the President to invade a neighboring nation, whenever he shall deem it necessary to repel an invasion, and you allow him to do so, whenever he may choose to say he deems it necessary for such a purpose -- and you allow him to make war at pleasure. If today, he should choose to say he thinks it necessary to invade Canada, to prevent the British from invading us, how could you stop him? You may say to him, "I see no probability of the British invading us' but he will say to you, 'Be silent; I see it, if you don't."
Abraham Lincoln
-----
What difference does it make to the dead, the orphans and the homeless, whether the mad destruction is wrought under the name of totalitarianism or the holy name of liberty or democracy?
Mahatma Gandhi (1869 - 1948), "Non-Violence in Peace and War"
-----
O Lord our God, help us tear their soldiers to bloody shreds with our shells; help us to cover their smiling fields with the pale forms of their patriot dead; help us to drown the thunder of the guns with the shrieks of their wounded, writhing in pain; help us to lay waste their humble homes with a hurricane of fire; help us to wring the hearts of their unoffending widows with unavailing grief; help us to turn them out roofless with their little children to wander unfriended the wastes of their desolated land in rags and hunger and thirst, sports of the sun flames of summer and the icy winds of winter, broken in spirit, worn with travail, imploring Thee for the refuge of the grave and denied it.
Mark Twain, "The War Prayer"
-----
Only the dead have seen the end of war
Plato
Wilfred Owen, 1918 letter to Osbert Stilwell
-----
Allow the President to invade a neighboring nation, whenever he shall deem it necessary to repel an invasion, and you allow him to do so, whenever he may choose to say he deems it necessary for such a purpose -- and you allow him to make war at pleasure. If today, he should choose to say he thinks it necessary to invade Canada, to prevent the British from invading us, how could you stop him? You may say to him, "I see no probability of the British invading us' but he will say to you, 'Be silent; I see it, if you don't."
Abraham Lincoln
-----
What difference does it make to the dead, the orphans and the homeless, whether the mad destruction is wrought under the name of totalitarianism or the holy name of liberty or democracy?
Mahatma Gandhi (1869 - 1948), "Non-Violence in Peace and War"
-----
O Lord our God, help us tear their soldiers to bloody shreds with our shells; help us to cover their smiling fields with the pale forms of their patriot dead; help us to drown the thunder of the guns with the shrieks of their wounded, writhing in pain; help us to lay waste their humble homes with a hurricane of fire; help us to wring the hearts of their unoffending widows with unavailing grief; help us to turn them out roofless with their little children to wander unfriended the wastes of their desolated land in rags and hunger and thirst, sports of the sun flames of summer and the icy winds of winter, broken in spirit, worn with travail, imploring Thee for the refuge of the grave and denied it.
Mark Twain, "The War Prayer"
-----
Only the dead have seen the end of war
Plato
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