September 20, 2011

first off, this is a long read and a politcally, religiously (for some) and ethically charged issue. I'm not trying to stir things up but those that will read this might find themselves stirred. It is a complicated issue that cannot be done justice in a single blog post, but since the issue has always interested me I wanted to put to paper some of my personal thoughts on the matter. Since my aim is not to begin a discussion I have disallowed commenting for this one post. Anyone who wishes to contact me privately, knows how to do so. 

This is my dog Sanji. For those of you who love dogs or own a dog yourself, she is sixteen and a half years old. That's pretty incredible. She's a dynamo on four legs and she has seen many, many animals come and go over the years. She is so harmless that she accepted any and all animals the second they were introduced to her; cats, other dogs, rabbits, hamsters, birds.
When she was a few weeks old someone drove to the local supermarket and dropped off a cardboard box with Sanji and her brothers and sisters inside, leaving the box on the road of the parking lot. 
All of the animals that we have shared our lives with, with the exception of one bird received as a gift, were strays found or those that had no home. One winter a stray decided to have her litter in my stairwell. The mother stopped feeding them early on and so it was my job to feed them several times a day and keep them warm in an enclosed area at night. I tried animal shelters but they wanted a donation $75 per puppy to take them in and there were six. It was extremely inconvenient and expensive caring for them but I did until they were six weeks old and then my daughter began finding them homes and found one for each dog. The mother was found dead across the road, apparently she had tried to get into the chicken coop of the neighbor and he had had enough. As the chill of night descended I spent 45 minutes breaking apart the cold hard mud to dig a hole deep enough for her before the jackals would come.

Now I understand that the decision to take in a stray animal can actually be an easy one for many people. I certainly think about the countless animals, because the owners of many animals don't neuter them, that either die or go wild and how Sanji could have died there, run over by a car. Instead she has been a companion to the children and a watch dog. She still walks around outside at night, not knowing what it is she's barking at but she still wants everyone and anything to know that she's on the watch.

The decision whether to allow a child to be born though, is of course a monumental decision. Normally, I can imagine, for many people it is good news to know they are expecting a child. There are many unwanted pregnancies of course, no need to go into detail, and often a decision is made to end the life of the developing child. Sometimes decisions are regretted, for various reasons. Often they are not, as the arrival of a child to a 15 year old,  for example can be quite a catastrophe. A mistake was made, but it is possible to correct it. No more child and life goes on.
So there are circumstances where introducing a baby into the world is...disturbing in the extreme. So much so that the choice to end its life is made.  More or less the same thing happens when during pregnancy, where a couple are actually looking forward to bringing a child into the world, are notified that the child will be disabled in some way. 
Needless to say, the level and degree of physical and mental compromise found cannot be expressed with any real sense of accuracy with the exception being certain known genetic syndromes. What remains is that the vast majority of cases the deviation from normal is either missed or described only vaguely.

Still, parents, in particular the mother, are put before a decision which must be made. The issue of termination of pregnancy is huge in scope. There are cultures where gender selection causes routine abortion. Normal healthy lives ended because they were a boy or girl, depending on the culture.  So this is tricky ground to be treading, since abortion is so widely prevalent in the world. Obviously most people feel that it is well within their rights to abort a fetus. Some need to be placated by legal and medical terminology since knowing that what is growing inside the mother's womb is a 'fetus' and not considered a human being, without a sense of awareness, makes it much easier to terminate that life. The self-gratifying logic seems to end there since the fact that this 'thing' has, if properly nurtured, the potential for becoming a full fledged human being, just like them, just as they were given the chance to live by their parents, seems no longer relevant.

With my son Segev, the impetus for this blog, all the test were done, extensively. More than is required but still, with much of his cerebellum missing and various other compromised structures in his brain, those tests showed nothing unusual and Segev, despite the harrowing near miss of his introduction to life, was born completely normal in appearance.

Many people though are given some advance notice of their child's deviance from the norm and decide that such a life is not worth living. That last bit makes me think of people who's lives were pretty horrible, or ended abruptly. 

Taking a leap forward, perhaps one day we will be able to say with the same vague sense of certainty that someone is going to be abused throughout their childhood and therefore the pregnancy should be terminated. Certain criteria will be established to determine, perhaps through socio-economic statistics horded by the insurance companies, what the quality of life would be for a person and parents will be given some form of remuneration if they abort the pregnancy since an abused child will cost the state a fortune in expenses; medical, psychiatric, prison and so on, all along the lines of "minority report".

Leaving science fiction: How we make life and death decisions about unborn children certainly is changing due to societal perception which in turn is influenced by policy makers, medicos and ethicists who establish models of conceptual thinking from a wide variety of motivational factors. 
How we perceive the value of life is not static despite the influence of millennia of religion. Commerce drives the world today and therefore financial considerations are prevalent in ethics as well, albeit that some ethicists try to  imply that the discussions, such as those that led to the "Groningen protocol" are long over and therefore the established practice is no longer in need of scrutiny (and perhaps even updating).

Personally I look at the issue of abortion as follows, in particular as it pertains to the foreknowledge that something might be wrong with the unborn child; if I make the decision that the life of the developing child is not worth living, I do so with the knowledge that I am killing a human being.
A fetus is, after all, not a seed. He or she is not like a seed of a tree which can be kept frozen for a hundred years, defrosted and then planted, where it will grow into a large healthy tree. Certainly we can't compare a fetus to the seed of a tree. We cannot postpone the potential of the fetus, like we can that of the seed, to become what it is supposed to become. That incredible moment where life was created and moves forward towards becoming a human being has crossed a boundary of no return. The only way to stop it is to kill it and if you take no action whatsoever it will reach its potential: to be born.

What happens after that is pretty much up in the air. But does an extremely physically and mentally compromised child, just born, automatically fall into the category of "a life not worth living?" The decisions that led to the Groningen protocol appear to answer yes, since the doctors and lawyers who discussed various cases leading up to it maintain that certain children will have short and unbearable lives due to established knowledge of the course their defect will run.  
The precedent has been set and is implemented in several countries, carrying with it  a sense of ethics that pushes at the boundaries of what is acceptable intervention in the lives of severely compromised children. Once it was done with impunity, with or without backing from the law, now in politically correct times, the law is made to fit a growing niche of behavior.

The CDC reports that in 2007 over 827,000 abortions were performed. They and also the WHO's reports on world wide abortion are preoccupied with public health: how safe is abortion for the mother. Statistics on age and ethnicity but little on the reason why it was done. Certainly not all reasons should be clumped together. Certainly there must be place to discuss varying circumstances and create an atmosphere of education? But in modern western society, let alone less fortunate countries, the acceptance and support for raising a severely compromised child is reason enough to think twice. And the gaining acceptance of the Groningen protocol is wielding its cadaverous weight as well.

This discussion is of course large and hardly done. My main concern is actually not whether or not people decide to abort a child due to the expected hardships and suffering he or she will incur. My beef is with the fact that the decision is not properly informed, not considering the possibility that life with your child can be hard beyond measure in a million different ways, disability is only one of them. No one can accurately state how long and to what degree a child will suffer, disabled or not.

We don't want to go seeking trouble and pain though, do we?  It's not exactly as if, knowing we will have a physically and mentally compromised child, we rush forward to embrace it, wishing to have as many such children as possible.  We don't go looking for danger and suffering. We don't drive exceedingly fast cars on a closed circuit where the odds for severe injury or death are extremely high, do we? And even if we did, it's not as if anyone would sit down and watch such a spectacle, relishing the drama of a crash?

By the way, is that what happens when other people see a parent, struggling to take care of their extremely disabled child? They relish the fact that it's not them?

So do we go out and climb mountains, jump from those mountains, drag race, boat race, motorcycle race, smash our heads together in football sustaining permanent damage, box, luge, race horses and so on and so forth, risking our life and limb, and as onlookers, drooling with excitement at the spectacle?  So we do all that, so often, with such vigor, stretching the ability to escape death, repeatedly, but we won't give a child a chance to be born? Again, the same chance that your parents took when they let you in the world.
But as I said, personally I don't have a problem with people's decision as long as it is informed. And don't call it a fetus to make it go down easier, because if you destroy that real potential for a human being to exist, you are killing that particular human being. As long as that is understood, then each person makes a decision based on their own conscience.