Who decides on a life to be lived

May 26, 2011

This is a personal view, inherently contentious, an expansion of an article that I wrote on Dailykos. com, based on a N.Y. Times Magazine May 31 article on Conjoined Twins .  If reflects on deeply held views on Abortion and eugenics-or a version of it which would be state mandated abortion.   It conveys personal thoughts that I wanted to be separate from the more objective article that I wrote there.  If interested here is  the Dailykos article  

Empathy is something that we value in individuals, and assume it is the bedrock of compassion and a benevolent society.  We (meaning the liberal consensus of 21st century America) desire lessening, even eliminating infliction of emotional pain on all humans.  To do this we must undergo many mental contortions, and these have become entrenched into our very language.  The idea is that if we have eliminated all words that are associated with disparagement, ridicule and hatred, than these evils will disappear.

This exacts a cost to our society, as we must sacrifice precision of communication in the elimination of such definitive terms.  Recently the term "mentally retarded' has been abolished for use in the federal government by legislation.  This term, that referred to congenital conditions that caused cognitive impairment was replaced with "intellectual disability" (passage of this law described in this essay) This new term can mean anything from a condition caused by lack of education, traumatic injury or senile dementia.   With a stroke of the pen, a precise term was replace by one less specific. And worse, the goal is, and the effect will be that those who use the now discredited word will themselves be defined as either uneducated or confrontational.  The language has been debased for no other reason than a disproved dream that abolishing words of hate eliminate the hate itself.

The condition of being born conjoined to another cannot be described by any of the accepted words such as "challenged", or "differently abled"  And as the words that allow us to discuss the extent of this disability have been relegated to the ash heap, so has the tone of looking at profoundly debilitating conditions such as the two girls described in the N.Y. Times article.  We have accepted a tyranny of a language, a version of Orwellian New Speak,  that has precluded meaningful discussions that are raised by the article in the Times. .

This article, by examining the life of these two girls, by the assumption that exploring their lives is appropriate, ignores the greater issue, which is does society have an obligation to prevent the suffering that these girls will endure.  The editors of the Times, once they decided to print this, attempted,  based on evidence I will provide, to select comments that would be supportive of their world view.  I personally sent in a sharply critical comment very early.  For the first time after perhaps a hundred of such comments, it was rejected.  Of the first fifty comments, only a handful were mildly critical of the article, the rest uncritically applauding it, thus conflating sympathy for the conjoined twins with rejection of views on the appropriateness of their being born.
The one comment that slipped through, #9 said clearly that it was irresponsible not to have aborted those with this terrible disability.  If the first fifty comments were posted were even roughly consistent with those that were submitted, we would have expected comment #9 to be criticized or ignored.  But, it turns out that this comment received ten times as many recommends as the average of the laudatory comments that were posted.   My conclusion is that  rather than posting comments reflecting readers opinions, they were selected to support the tone of the article.

Going beyond the media and linguistic aspects of this issue  is the underlying question, is that of  what is right. In the case of these girls, my empathy for them causes me personal anguish. It is strong enough that I have to do what I can to try to save them, and others like them, from this suffering  in the only way possible, by making the case for not allowing them to be born. .

The writer of the article misconstrued the one example of another such conjoined twins who chose an operation with slim chances of survival rather than continue the suffering of such a life.  Who can imagine what they went through reaching this decision?   Here's a description of their lives before they decided to take the high risk operation from Wired Magazine.
Despondent, Ladan and Laleh returned to Tehran. They started taking antidepressants, eventually warding off suicidal impulses by upping the dosage of amitriptyline to 10 times the normal amount. Every move - getting out of bed, going to the bathroom, sitting down to a meal - had to be negotiated. Laleh took a liking to videogames. Ladan hated them but was forced to watch while her sister played for hours. They couldn't stand it much longer. 
I suspect that this Times article will awaken a new interest in this tragic condition.  A quick search on Google gives extensive descriptions, including videos of those who are surviving with this condition.  One way we deal with situations beyond our control is humor,  So tragedies such as this become  a source of parody.  An example is a video of two boys joined at the penis.  There is no such case, yet there are others cases that are just as.......here words fail me, and they fail all of us.  While the men with the common penis is a joke, it's not far from the reality of a few who our society says we should be able to treat just like everyone else.  I suggest that such conditions  go beyond our capacity for empathy, and so rather than emotional identification we have rejection, in this case in the form of ridicule.

The N.Y. Times, writer and editors,  attempted to ignore this human reaction, the root explanation  of freak shows and absurd youtube parodies.  They did it in two ways.  First they objectified the girls as a scientific phenomenon,  their unimaginable suffering actually a cause for celebration by one quoted neuroscientist.   The second method was a soft condemnation of those who reacted to the immensity of  the probable suffering of these girls. The Time's article's message was,

 "This is just a normal struggling loving family with special needs children.  Keep moving along folks, and don't stare.  (but don't forget to read the article with the provocative title....and keep an eye out for the new reality show that will expose the family to the world." 

The Times belatedly decided to include comments that criticized the article, mine is linked here. ,  comment number 113.
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I will also take the occasion to post a couple comments from the Times, mostly personal experiences, that reflect the range of reactions, some supporting my position, others opposing it.
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114.
Valerius
I have a one-in-2 million birth defect and yes, it was very hard for me to be in public as a child. But I am 46 years old, and my childhood memories are 40 years old.

Times have changed and today, individuality rules. For me, the photo says that these kids will be okay. The father-son mohawks have me convinced this family doesn't really value conformity all that much, and have the capacity to love their girls not just in spite of their differences, but because of them.

There is a set of conjoined twins who live in the Twin Cities metro area, and people are used to seeing them. I've lived in Minneapolis, and people are used to seeing me. I do not get ridiculed or ignored. I am treated fairly and kindly when I am out. Then again, the Americans with Disabilities Act helped insure that I have equal access to stores, a job, housing... life isn't all that bad for people with disabilities if they have healthy, supporting families.

In terms of being bullied or legally discriminated against, these girls would be worse off if they were gay. ---------------
121.
Sally

I'm an identical twin. I could not imagine anything more horrible than to be conjoined, especially, as this article hints, one is more dominant (physically and emotionally) than the other.
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Darrell E. Issa, our new Congressman

September 2 , 2011


This is a copy a Guest Editorial with links to references cited that appeared in The Coast News

Darrell E. Issa, our new Congressman

Under the new redistricting for the House of Representatives, the cities of Carlsbad and Encinitas will have a new incumbent for the next election, The last thing that Issa wanted was to have his new constituents introduced to him by a critical article in the left leaning N.Y. Times.

If you know that a major newspaper is about to do an article that is part of a series on Congressional corruption, you could work with the reporter to make sure it's accurate. The other strategy is to refuse to answer any questions, trusting that errors would seep through that could be used to refute the entire article as an irresponsible smear. This was Representative Issa's strategy, and it looks like it worked. Not only has the substance of the article been overshadowed by his claim that the article was libelous, but it has made most local media gun shy about reporting another newsworthy story.

The series of articles (available from the Time's web site) had included two legislators from each party to make the larger point; the individuals being examples of the damage that was done by the current lax ethical norms. The other featured legislators engaged in a dialog with the paper to improve accuracy; only Issa refusing to even respond to phone calls.

As chair of the House Committee on Oversight and Government Reform, Issa has the broad authority to look at every aspect of our vast federal government. In such a forest of agencies there is abundant low hanging fruit; some such as the ill conceived Mexican gun running sting approved under the Obama administration, and others of vastly greater importance, that represent endemic corruption of both parties by powerful special interests such as the financial industry.

In 2008 the repeal or lack of enforcement of laws overseeing financial institutions brought our country, and the world, to the brink of financial collapse. One company representative of this industry, Goldman Sachs, not only survived, but benefited greatly from the TARP bailout that was initiated under the Bush administration and continued under Obama. In order to prevent such a disaster from occurring again the “Restoring American Financial Stability Act of 2010” was signed, which has become one of the targets for repeal or evisceration by the new Republican majority in the house, with the effort lead by Issa's committee.

The very day that the Times article came out, Atlantic Monthly Online disclosed a relationship between Issa and Goldman Sachs. Going beyond the corrupting effect of battalions of lobbyists and unlimited campaign contributions, Issa seems to have pushed the envelope. He hired a lawyer who had been a vice President of Goldman Sachs under the name of Peter Simonyi to be in charge of writing revisions of the 2010 law. The reason this was not known to the public is that he had subsequently changed his name to Peter Haller.

The New York Times can ignore spurious accusations of libel, but smaller media outlets are hesitant to incur the wrath of a powerful legislator threatening lawsuits who is one of the wealthiest members of Congress. So, we can be sure that the Union Tribune, on whose pages the libel claim appeared, will not follow up with a challenge that Issa actually initiate such a suit-or withdraw the accusation; as the Times, after correcting two items, has defended the substance of its article.

The Supreme Court under the recent Citizens United case has opened the floodgates of corporate wealth dominating campaign advertising. We know that corporations such as Goldman Sachs can finance the ads that inundate us during elections, but we didn't know that one of their recent executives was drafting the laws under which they will operate.

North Coast San Diego now has a member of Congress with the power to make a difference in political life. This gives us, the voters, the potential to influence the direction of the committee that he chairs-- whether it shall be focused on partisan gains for next election, or on reforming the endemic corruption of government that threatens us as a nation. This is the ever greater historical challenge, one that will only be undertaken if we, Issa's constituents, demand it.

Al Rodbell
Encinitas CA
Alrodbell.blogspot.com.
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Full Text of N.Y. Times response to Issa's claim of inaccurate article

Scalia on Burning Koran

There are two approaches to eliminating blasphemy. which includes desecration of revered objects such as a Bible or Koran.  The traditional way to prevent such blasphemous actions is through punishment, historically quite severe .  We are now seeing this in the ongoing homicidal response to Reverend, no I won't use the honorific term, to Terry Jones' burning of a copy of the Koran at his Florida church. 

 
Blasphemy is inextricably tied to the concept of the sacred, and can be extended to similar reverence for symbols of a nation or a people.   The metaphysical aspect of such object is recognized in their essence being extended beyond the original artifact to any representation of it; thus a printed copy of the Koran, or a mass produced flag is imbued with such sacredness.

Those enraged Muslims, presently only in Afghanistan, make the assumption that, as would be the case in their own countries,  because Terry Jones is allowed to do this act he has the tacit support of his government.

They are not completely wrong.

In this country we do not murder those who defile our own sacred objects, but we are not that far from doing so.  I'll focus on one of these objects, a secular sacred symbol that is so revered by America that the legality of its treatment is decided by decisions of the highest court in the land.

The most recent Supreme Court Decision U.S. v. Eichman was a reiteration of the landmark more extensive decision Texas v. Johnson summarized in this conclusion:

The government's interest in preserving the flag as a symbol did not outweigh the individual right to disparage that symbol through expressive conduct.


These decisions that articulate a principle at odds with values that are entrenched in  fundamentalist Muslim circles only passed by a hair's breath, Texas v. Johnson by a single vote of the court.   The vast majority of Americans dearly want to punish those who burn our highest sacred object, the American flag.  One state tried to get around the freedom of speech protection of the Court by proposing a law that the maximum penalty for any individual who violently attacked a flag burner would be a twenty five dollar fine.  It was a law to foment mob revenge.

Flag burning is exceedingly rare in this country as the reaction against it can still be violent. The symbol is so powerful that almost every political figure wears a representation of it on their lapel, including the current President who had earlier publicly rejected this.  It is a type of amulet to ward away the curse of "unpatriotism" that can be dangerous to life and lethal to a political career.

The last try in 2006 for a constitutional amendment that would have made this country more similar to those  controlled by Muslim fundimentalists on this issue, by allowing punishment of those who burn our sacred object easily passed the House, but failed to get the required two thirds majority in the Senate by a single vote.

So what do we do about future Terry Jones wannabees,  who now know that they can become a world figures, just like those such as James Earl Ray and Lee Harvey Oswald, by causing death and chaos, but without any possible punishment for their action.  Do we want to carve out exceptions to our first amendment right to absolute freedom of speech.  It's an option, but a bad one, as it taken to its extreme it could allow any group ruthless enough to commit mass murder protection against criticism.

This opinion happens to be shared by Antonin Scalia, the most conservative member of the Supreme court, as he said in this interview from last year that I happened to have watched days before the Koran burning.



When asked about the possible, then potential, reaction of Muslims to the burning of a single Koran should it be an exception to the rule of unfettered freedom of speech, Scalia responded,
Unless it's going to cause a riot here, which the police can not effectively stop, No, It may be a very bad idea, nevertheless it's perfectly constitutional (meaning it's constitutionally protected)


I had the privilege of meeting Justice Scalia, right after he had joined in the decision that protected the right of those who burn the American Flag.  It was at a speech at the Jewish Theological Seminary in Manhattan, where the audience was won over by this man who publicly proclaims that America is, in fact, a Christian country. 

Scalia is an unusual man, as brilliant as they come yet also as down to earth, folksy, and warm hearted as can be.  While widely despised by liberals, he maintains a strong personal friendship with Ruth Bader Ginsberg the justice who is most consistently, and vehemently opposed to his court opinions. 

When Scalia proclaimed that burning of the Koran is protected by the Constitution, the act--and the reaction by Muslims, the taking of innocent lives had not yet occurred. As of this writing this article describes the carnage sparked by this action in Florida, so far twenty dead and eighty injured.

Now, I will switch the mode of this essay to addressing Justice Scalia directly, on the off chance that the senior official that I know on the Court should read this and choose to call it to his attention.   It is my answer, the only answer I can think of to the conundrum between supporting the first amendment or protecting the investment of trillions of dollars and thousands of lives to avoid the clash of civilizations between the Western World and Islam. 

Justice Scalia,

I happen to personally agree with your stand as a self described "first amendment absolutist" which shaped your decisions on the two flag burning cases. 

I was gratified to learn that one of your most respected Justices is Robert H. Jackson, whose decisions were cogently decided and articulated, yet there was a time when duty required his stepping outside of the court, to be the chief U.S. prosecutor for the Nuremberg Trials. 

This is such a time for you.  While you were the deciding vote to keep our country from defining as a secular blasphemy the desecration of our national emblem, by this decision you could not change the de facto law, more powerful than statute, that does in fact make this object sacred. 

You personally are on the horns of a dilemma, caught in a logical inconsistency defined by cultural norms that are only indirectly affected by law.   We do, in fact, protect our secular icons and we do condone violence against those who breach this strictures.  Certainly not to the degree of the murderous mobs in Afghanistan, but given what has gone before and what is yet to come in this region, that protection of our first amendment means not only death of innocents, but perhaps the animosity of those  very people whom we have sacrificed so much to bring to our side.

Freedom of speech as a constitutional protection does not translate well into Arabic.     Your courage in voting to allow flag burning, which implies allowing defaming any symbol of any group, is not convincing to those whose hatred for Americans is based on the belief that it is their religion that is being defamed, and not America's.  

You may point to precedent, the refutation in law, yet it will not stop the slaughter this time, or any future time that one who emulates the Florida pastor chooses this quick way to fame.  Words won't do the job.  Protection of our first amendment right to freedom of speech, and our ability to avoid a disastrous clash of civilizations  requires action outside of not only the court, but of existing institutions.

You, as an individual, as a patriot and as a Catholic, must participate in the desecration of your own icons, which would not be a desecration at all since that which is sacred remains so even after representations of them are destroyed.  You, along with those who you can bring to such an event, must have a "book burning" but in this case not to destroy, but to liberate.  The very pain, the distastefulness of such a ceremony is  essential, as it reflects the pain of Muslims who see their own sacred icon defamed.  Only by your own pain can you show, can you illustrate that we do not accept blasphemy as a concept, in our own religion any more than we do in theirs.  

With each Holy Bible, with each American Flag, with each Christian Cross or Jewish Star that goes up in flames you would be proclaiming that no object shall have protection, that it is the ideas that are sacred.  America will not prevent the burning of the Koran, as we should not.  But we must demonstrate, in vivid dramatic imagery, that as we allow the defiling of their icons we do so to ours also.

Al Rodbell


I wish this could be done without Scalia, as a bottom up movement to show the world what America stands for.  But I have doubts that such a movement, desecrating patriotic and religious icons could happen without the support of those such as him.  And as much as those on this website may revile Antonin Scalia, I'm hot sure I can think of any other figure who is part of the religious right who would be a candidate for showing the world that even if we are a Christian country, we are also one that values the Enlightenment ideals of freedom of expression.  And when push comes to shove, it is those ideals, that happen to be those of our founding fathers, that we will give priority to.

Encinitas Madonna

Stupid Gringo that I am, I had never even heard of her. If someone had mentioned "Our Lady of Guadalupe" I would have responded with a quizzical, "Huh?'

Here's the news story, with a photo, from the local San Diego Union Tribune:

The city famous for its catchable waves and funky public art now has a new piece apparently installed by a brazen crew of bogus construction workers.

On an afternoon shortly before Earth Day and a few days prior to Easter, a group of men in hard hats installed a 10-foot square stained-glass mosaic of a surfing Our Lady of Guadalupe, complete with booties. “Save the Ocean” runs along the side of the mural. On the nose of her surfboard is the face of Saint Juan Diego who, according to legend, saw the Virgin Mary near Mexico City in 1531.


I feel a certain obligation to write this blog, since when I read about this I wrote a letter to the members of our city council that now has been tempered by some discussion and personal investigation. Here's that letter:

To the Encinitas City Council:

Interesting article in today's UT.

This time, I agree with Councilman Jerome Stocks (who was reported as saying it must be removed), plus these additional reasons to remove it.

The last thing we want in a tunnel, where cars are driving close to pedestrians is a visual distraction. Remember the tragedy in a similar site under I5 on Sante Fe Drive

We do not want to encourage Guerrilla Public Art, as it will always present this conflict of either removing, or tacit public support for the message in retaining it.

One way to deal with this is to consider a venue, a time and a place for open expression of artistic messages. However, this could also be more problematic than it's worth, as it could be a source of more contention, something we don't seem to be in short supply of now.

And here's an aside, not to be made public. The underpass of a train is a target for terrorism. A few sticks of dynamite with a simple cell phone type of detonator, could bring down the trestle, with great loss of life to a passing train. There should be a focus on how a group of people pretending to be authorized construction workers were not questioned by law enforcement. New procedures should be considered. -(Since the potential for something like this was subsequently publicised from Osama bin Ladin's computer, no need to worry about giving anyone the idea)

This is defacing public property, and it's not the council's job to be moral arbiters or art critics. Remove it quickly. And if you find those who did it take appropriate action for their infractions.

And suggest that they use the many venues legally available to express their artistic impulses.


When I spent some time at the mosaic, talking to several people, I got a different perspective. Sometimes we are better to benefit from an event like this, to explore what can be learned, rather than react as I did, that it was a breach of lawful process and that's the end of the issue. Actually, that's only the beginning.

I had a long discussion with Ava, a woman who came to this country from Mexico when she was a small child, and lives her life in both cultures. She was hesitant to be interviewed but then gave me the O.K. She described the complex feeling that she had about this image of what I learned was the patron saint of Mexico, a revered Icon that is the source of comfort for so many Catholics.

Her ambivalence, coming down on the side of keeping the mosaic in place, was only made clear when an older man who spoke only a smattering of English rode by on his bike. He looked at the mural and was disturbed by what was being done to this most sanctified figure of his religious belief. For those interested in his words in Spanish, here's the short interview.





He wanted the image of the virgin, that was fine, but without the surf board---just as he always saw her represented in his church. "She is not a clown" were his translated words. Of course having a such a picture of a Catholic Saint devoid of the social commentary that he objected to, would not work in a public space for various constitutional reasons. 

Eva, told me how the Lady of Guadaloupe is more than a Church figure, but part of modern culture:



There was another woman who was visiting from Virginia, who was delighted by the mural. She was a gringo, and while being catholic did not have the same emotional connection as the man on the bike (sorry I didn't get his name, amateur that I am) She made a simple point to the crowd, with a broad smile. "Look how it has gotten us talking together."

She was right. The message in bold letters on the mural is "Save the Ocean" a sentiment that all, of every religious and ethnic background, can support. While this mural is an example of breaking the law, it raises the question of whether those who follow the law, those who are overfishing, and polluting the oceans, may not be doing far greater harm.


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The city council voted unanimously on May 18 to remove the mural, and to relocate it if possible.  




One understanding of true art is that it provides a mirror to society, just askew enough to challenge unspoken  assumptions.  From this perspective the quality of the work is irrelevant.  This is performance art, with the mosaic not being the focal object , but rather the precipitating agent of the month long drama that took place.

As performance art this a success, as both a diversion from the events of the day, and also a reflection on democratic governance.  By removing this mural, the city made the statement that it would not allow a religious icon to be either glorified or defaced on public property.  That's how this country works, whether on the Federal or Local level.  

Good Job Council