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.
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.
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. ---------------

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.