Excellence, compromise, achievement

Society appreciates the best. The best in everything, we strive toward it, it motivates us and makes us feel good when we see success, betterment, advancement, stronger. The champions make it look attainable, you too can do it, or at least try. True dominance, be it in the sciences, Niels Bohr, Einstein, the arts or sports, business or spirituality is lauded, quite justly.  

We are advancing as a species, we excel in dominating this hostile environment, imposing our will, advancing even our instincts to self preserve to the point where arts have formed to exercise our martial tendencies.

So it seems only natural that people who are capable of less are less regarded. Severely disabled people of course, can no longer be looked down upon so we pity them, excluding them from the competition.  

Last year there was a mixed martial arts competition where a natural quad-amputee participated in a sanctioned fight against a regular fighter.  A gross mismatch since it was not possible to gauge the amputee's abilities according to average standards. What exactly he was hoping to prove, I'm not certain. No one can question that he has heart, though.

Society appreciates the best because it helps us to continue to strive to move forward, in technology look what we have accomplished in a mere one hundred years. Astounding. Incomprehensible, and someone who says otherwise, that it was all quite expected is a delusional idiot since the only ones describing these quantum leaps in technology were science fiction writers who were as highly regarded in the academic world then as comic books are today.

Have we made quantum leaps socially as well? Obviously not. We drop the atomic bomb, annihilating over a hundred thousand souls and our moral refinement justifies it as though aggression, in a fight fire with fire attitude, will end when we crush it forcefully. History proves this thinking to be incorrect. We cannot broker our own survival instinct.

But there are those that are certain the next big invention is just around the corner. Some technology or bio-technology will appear that will finally put our fears to rest and help bring true order to human existence, a calm which religion has not brought. We want to get rid of the divisive nature of man, to unify him, through some kind of technological wonder since we are in the technological age. We had a philosophical age, and waged wars based on them. Religious age, the age of enlightenment which saw us conquer the "savages" of the world, in the process reaching new heights of savagery.

So, now technology will save us. No, I don't think so. While I recognize the inevitability of our forward momentum, carrying us to the stars for example, though tempered by the fact that our own oceans are probably 99% unknown and we destroy vast areas of land without knowing its true value, we will move forward, it's in our nature.

But nothing will come along to place order, to save us from ourselves, but ourselves. The only order that can come is that from within.

So while assistive technology will help create more and more equal ground for disabled people, (who knows even for extremely disabled children like my son,) but if we put our collective conscious into that basket then when, oh when, will we concentrate on the true issue of creating a place of dignity for someone who was, through no fault of their own, born with extreme disabilities, even to the extent that they are without the ability to live for more than a short time?

A house divided against itself cannot stand. Polarization is the only result.  Those who seek only strength inevitably decline. In body building, if you don't work to strengthen the synergistic muscles, those smaller supportive muscles, you can never build a strong enough base and injury is inevitable, often debilitating. We've learned a great deal about how the physical body works, excepting the brain, here too advancing tremendously as shown in sporting competition. About our psyches we know very little.

Society can become massively strong, as throughout history empires have risen and fallen, power shifting and change resulting in strengthening. Always there have been sacrifices, those sacrificed. I have no doubt that at this stage, our children are being sacrificed.

The Hastings report on the ethical committee's compromise in Seattle, Washington concerning growth attenuation for extremely disabled children does not give me much hope. Not because the consensus did not come out how I personally would have preferred, but because when you want to establish ethical guidelines the intent is to describe to society what is average and thus normal.  While medical viewpoints are well represented on such panels, parents of extremely disabled children are not and the selective approach of addressing growth attenuation only helps de facto, to define roles for extremely disabled children in society by setting the tone.

Now probably no one will argue with me that it wouldn't be appropriate for representatives of healthcare insurance companies to be invited to the panel for discussion, after all, we can all rather cynically state that insurance companies have financial interests as their first priority and that ethical policy should be concocted without the muddying influence of financial consideration.  As  a matter of fact the case can be made that they would be biased for such extreme measures as an "Ashley X  treatment" since it could theoretically prevent future expenses in the care of the child.

But if we are to be honest with ourselves, financial aspects definitely dictate treatment in the real world. Better care definitely requires government and insurance companies to deal out more,  even in the search for inventive treatment strategies.

But they do in the real world dictate for the most part what is available and so my conclusion is that they should be required in the panels and committee's charged with defining operating policy in regards to growth attenuation since the most basic question of human rights can be addressed there where, as a test case, the possibility for infraction, if not already fait accompli, at least lies in potential.