"Could Conjoined Twins Share a Mind?" by Susan Dominus is on line now and will appear in Sunday's Magazine. It is a long article, around six thousand words, which I will summarize as objectively as possible.
At that point the reader may choose to read the article in full. If there is interest, I will update and perhaps repost this Dailykos Essay (Diary) I have deep objections to this article, and more importantly its cultural meaning. The objections are on multiple levels, so in order to keep this interactive and focused on the issues, I will keep these extended views separate from this diary by placing them on my own linked website.
Synopsis of Article:
The article opens with a narrative of a busy child filled family, focusing on two girls getting to sleep, with the disclosure that these girls are special, "joined at the head-the medical term is craniopagus-one in 2.5 million of which only a fraction survive."
We are then introduced to the neurological gold mine these two children represent. One professor is quoted "“Absolutely fantastic. Unbelievable. Unprecedented as far as I know.” The author then presents the broader goal of her article, on which I suggest this endeavor should be evaluated:
An incomparable resource for neuroscientists interested in tracing neural pathways, in the malleability of the brain and in the construction of the self, Tatiana and Krista are also a study in the more expansive neural system of sociology: the feedback loop of how their family responds to difference, how the world outside the walls of their home responds to the family’s response and how the girls respond in turn
Next we view the mother, Felicia Simms, living in Canada benefiting from its expansive welfare and healthcare, she is described as being uneducated, unemployed and unmarried with two children at the time of this pregnancy at age 20. When offered the choice of aborting the twins she rejected it out of hand. After birth, the operation to separate them was deemed likely to mean the death of one, with a strong chance of both dying. They could survive as they were so the decision by the parents was not to operate.
There is a shift in focus to the perceptual anomalies of the conjoined brains, that the sensations of one child are to some degree felt by the other. A brief explanation of the brain physiology underlying this is presented. The writer ends her own exploration of the phenomenology of the twins with this:
At first, the sight of their younger sister, Shaylee, walking freely past the girls, struck me as painful, a constant reminder of their own constraints, her liberty a moment-by-moment assertion of superiority. But over time, my sympathies switched: the twins’ unity was so strong I wondered if Shaylee felt she was somehow missing an essential part of herself. When the girls wanted to wash their hands in the sink, they worked as one, silently, to drag the bench over to the bathroom. More often than not, they both seemed to want to slither like snakes at the same moment, to roll a ball down a ramp to the television room, to drift toward the electric piano.
Dominus then explores the historical concept of mind as a key characteristic of identity-exploring the unity of the pair yet how they rarely use the word we. She touches on the new discovery of mirror neurons that may be a physical component of what we call empathy. For many pages there is an inter mixture of plain human interest vignettes with neuropsychiatric explanation and analysis. She mentions another set of twins with a tragic outcome, Ladan and Laleh Bijani, that I will comment on later. Then we have this:
.....their lives may soon change even more significantly if Chuck Harris, a talent manager ..... has his way. Harris has been helping the family pursue a reality television show, not just about the girls (a detail upon which he insists) but also about the range of strong personalities living together in their small home. The decision to expose the girls to the gawkery of the American public is less fraught for the family than you might think — partly for financial reasons, but also because the girls are unlikely to have a normal childhood under any circumstances. The constant exposure, in some ways, would actually normalize them for the public, show them as they are, not as the people who pass them in malls perceive them.
Dominus closes with a picture of the messy imperfect process of raising children. The mix of joy, dispair, fear and love are poignantly expressed.
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At this point I will simply reprint the comment that I wrote that is now on line about this article. Perhaps you should not even read it, and read the complete article for yourself. This is something that has special meaning for me, based on a television special about another set of conjoined twins that I saw about a decade ago. These twins also are a unique natural experiment, even more so than craniopagus conjoinment.
It was so disturbing to me that I have kept it to myself all of these years. I never discussed it, or wrote about except for once. It was to a noted psychologist who I corresponded with whose website that depicted a vision of hell happened to show twins with their condition. As a psychologist, he should at least know that there are living people who he has so depicted.
Here's my comment from the article, and I welcome yours here.
There has been one comment on this thread #9 Katekila, that has received more many times more recommends than all others. She writes: I know it will sound unkind, but I really think the more loving choice given the information their mother had would have been to terminate the pregnancy. Life at any cost isn't always the best choice.
I would go further. This article tacitly is promoting the current belief that all life, no matter how disabled, is sacred. While the article does mention a similar case, Ladan Bijani and Laleh Bijani, it glosses over the meaning of their decision to undergo separation surgery in the face of a strong probability of death. These women were personable, highly intelligent, and successful in their professions.
Pointing out that they were the only ones to have made this choice implies something, perhaps that it was not moral, courageous or reasonable. Actually, the assumption should be that it was all three--and that these women were enduring unbearable emotional pain.
The tone of the article is upbeat, let's call it American optimism in the face of any challenge. There is no discussion of the deeply troubling loss of autonomy, the denial of a freedom that is a part of maturation, and the agony that these young women will certainly face.
While their lives could give some insight into neuronal connectivity, it is a natural experiment that never would have been approved by any ethics committee, not for laboratory animals, much less for human beings. While the current ethical norm is that every life is worth living, it has not always been that way. It is only after the long development of the eugenics movement, culminating with the travesties of Nazi Germany that we have illegitimated what had been seen as a responsibility of society.
I previously wrote a comment that expressed this more clearly and more cogently. It appears that with over a dozen printed letters to the editor, and hundreds of online comments, this point of view has not been acceptable to appear in this thread.
While the Times certainly supports the right of a mother to decide to abort in such cases, it is a legitimate issue whether giving birth under these condition falls under the legal rubric of the tort of Wrongful Life. The most serious challenging questions for our society that are raised by this report is glossed over by tabloid happy talk.
I don't buy it. And if the responses to the comment by Katekila is any measure, either do the readers of this newspaper.