The Lottery Of Life

I find it strange that after my discourse on the lottery of life, I should have turned on the TV and had to watch a horrible little documentary on a girl with fybrodysplasia ossificans progressiva (FOP) whose muscles are turn slowly turning to bone. Though FOP doesn't look particularly nice, I don't think it actually matters in reality what the name or nature of the condition is. All that really counts is the fact that there are people in the world who have been delt a shit hand. Some hold all the aces; others only the jokers.

Throughout my career, I have come into contact with a fair few children who are condemned to spend most of their lives in hospital and destined to die in their teens or shortly thereafter. Now, it is certain that these children will never leave normal lives. Yet, it is equally certain that in no way could it be said that they will never be happy: they smile; they laugh; they bond and they enjoy just as do others more fortunate. Even so, I cannot help but think that - were there reliable tests for all these horrible diseases that so cripple and curtail and were I solely responsible for the choice - I would not hesitate to terminate the pregnancy. Of course, this doesn't really sit very well with my professedly Utilitarian moral framework. After all, strictly speaking, any pleasure derived from whatever life one experiences is superior to no life at all because no life at all is guaranteed no pleasure at all. (Just to let you know: I don't subscribe to any daft deontological semi-religious ramblings about absolute wrongs and rights - everything in life is relative.) To me, it just seems so cruel for somebody to have to endure a life so shortened and torturous, a life which will never be normal in a society that does not tolerate difference well. To me, despite the smiles and the laughs, these lives seem to be more pain than pleasure - frustrated at every turn - and that cannot be right. The obvious charge is that I only think like that because, relatively speaking, I hold higher cards, and indeed, it must be said, that is a fair charge. Though no Cristiano, I am not being turned to bone by FOP, paralysed by MND, asphyxiated by CF, or destroyed by any other non-sensical arrangement of the alphabet for that matter. Perhaps it is true that, whilst I could never tolerate the loss of everything I have - the health, the freedom, the possibilities - perhaps had I never possessed them in the first place, I would be content to enjoy whatever form of existence I had access to. After all, for me, a life entirely consumed by swimming around in rivers eating microbes and avoiding bigger predators seems pretty dull and pointless, but to a fish, which has never expected or known anything beyond this, it is probably perfectly satisfactory and possibly even enjoyable.

The most trueful answer is that, in all likelihood, their are no glib certainties in issues such a this; only difficult personal choices. So long as we agree that people have the right to make their own choices on these matters, then I am happy to accept these decisions, on no matter what grounds they may have been made. What I cannot accept, however, is the argument that people do not have the right to choose. That is simply not acceptable.