December 20, 2011

assistive technology and cannibalism

We take our health for granted, we must. We need to look after ourselves, eat properly and exercise, get expedient medical attention, nip problems in the bud. Have a healthy awareness of our bodies and the various processes that go on inside of us. We need to be aware of how stress affects our well being and here, physicality and mind are inextricably intertwined.  
We take our health for granted whether we do the above stated things, these impossible things, or we don't do them. We must always look forward, passing the gauntlet, overcoming the odds, trudging through adversity. This way we build, learn, create, in short, move forward. But as we shall see, in order to do this, compromise is the reality of our situation.
Is sitting here in front of my computer really a good thing for my poor battered neck? But then again I have thoughts I wish to put down which can help to give me focus in my actions later.

So how is this situation for those that have less ability in our physical world of externals, to show us how much they can move forward? How is it for those that simply are not capable, if measured to the 'average' standard, to move forward at all? 

Years ago I had a discussion with a long time, fervent practitioner and teacher of yoga. He was explaining how the longer he practiced yoga the more he believed that it was truly a sublime way to enter the state of nirvana. That releasing energy blockages through the application of physical techniques and the resulting meditative state was really the only way to progress further towards enlightenment. Many people relate the same importance to prayer. On the other end of this philosophical spectrum are those who maintain that children like my son, who can not communicate in any measurable way, have no control over their body per se and suffer a host of debilitating and limiting physical and mental ailments is already a kind of 'perfect light'.

I too, in reference to a particular extremely compromised child, have likened her to a blinding light that most cannot look at. But my intention was to say that the condition of that child, the pain and suffering, the, for all intensive purposes, discordant pose that the existence of such a child strikes, is blinding in its intensity.  

Obviously there exist certain criteria with which to judge whether a person is capable of communicating. Some without the possibility of communication are branded as having "static encephalopathy" or considered to be in a vegetative state or merely mentally deficient. Anyone who is familiar with the story of Hellen Keller or Christy Brown knows that we have come a long way in adjusting our view of what communication really is. Recently they have begun, selectively, to apply brain scans and electric measurement to determine if people in an apparently vegetative state are actually aware of their surroundings. Though  this inquiry is limited in the extreme at the moment you can imagine that, as the results have shown, it is a gigantic step forward in establishing new criteria for allowing people to regain a foothold on life, where previously they were let into the abyss.
Of course the next step forward will be to create methods of communication so that the content of these individual's ideas can be expressed, their needs met. Eventually we may have institutes that specialize in bridging this communication gap for children like my son as well.
I fear though, that by the time this becomes reality the culture of eugenics will already have desensitized us to the need for such a thing and these people will waken into a world which they will then choose or be encouraged to leave, if they are even given the choice. The point here, other than my opposition to the utilitarian viewpoint (or rather the antiquated prevalent form usually heard), is that as history has shown us, great technology is always a double sided blade. Think of the atomic bomb being dropped on Hiroshima and nuclear energy powering our homes, space travel, or microbes used to heal us as well as being created as toxic weapons.

As I see it we have this very questionable future ahead of us for those who cannot communicate and therefore this is actually a golden age that we live in. Resources, as all parents of 'special needs' kids know, are scarce. Resources for the extremely or absolutely physically and mentally compromised, is just about non-extant. There are exceptions here and there, as I've written on various occasions; Holland is a prime, if paradoxical, example. But such 'advanced' relating to massive disability does not address in any form the question of how technology will increase the potential for non-communicative children or those previously considered to be in a vegetative-state to let their thoughts be known. Will it ever be cost effective? Or will only a senior government official after suffering stroke, or popular formula one driver or entertainer severely brain damaged after an accident be eligible for using this yet to be created technology? More or less, how it often is with today's technology.

So I am not optimistic about future technology helping, especially not when the apparent increase in acceptance of physically and or mentally compromised individuals is met with an equal increasing disdain and contradiction from those that feel there is no contribution on the part of truly non-communicative individuals or that it is simply not cost-effective in society.

Consider Stephen Hawkings. Suppose he had never had any assistive technology at his disposal and that he was born without the ability to speak.  All those wonderful thoughts of his, which some might find quite irrelevant, would never be able to find their way to our consciousness. As the years dragged on he would just be this decrepit person in an institute, being bathed and propped up, fed through a tube and left to listen to music or look at the garden.

Now, not everyone has the caliber of thought that Stephen Hawkings does. Not every individual or child who cannot communicate is a 'genius'. I would argue though as to the value of contribution of his brilliance as we know it today. Or put differently, I would argue we don't have a full understanding yet of how to evaluate the contribution of non-communicative individuals.  He really is a bad example in any case, Stephen Hawkings, since it isn't as though we can expect, even with a light year's advance of technology and the will to implement it for the 'casual' user, that those non-communicative individuals will ever be seen as contributors, as he is, or on the scale that the general populace is perceived. 

But here is the rub. How are we judging others, in completely automatic fashion, to be contributing and consider those that sit in a wheelchair and drool to be decrepit individuals worthy of our pity?
I know that I don't consider rapists to be contributing much to society and there are a lot of those. The reformed cannibals of Liberia? Bomb makers? Racists? Hooligans? Drunk drivers? The corrupt and the sociopaths? This list could go on. We could add them all up, and somewhere in that list you and I would figure as well, and get up to quite a nice sum of people. But they can walk and talk and go to work and build roads and fish and carve and design and paint so they are all contributing. Contributing to what? To our combined experience as a species. 
Just as the experience of caring for a non-communicative, non-mobile, ill child, as best as we can, with limited resources and little if any help, contributes to the understanding of what humans are capable of - honing skills which, as I believe, are just as useful, if not more so, than bungee jumping, driving down a race track at 300 km/h, building roads or writing great poetry.

Many are preoccupied with the endeavor of reducing the number of non-communicative children brought into the world through screening technology. Resulting eventually in an apparently 'better' human race. The fact that these children are part of the human race is being besmudged under the guise of "a life not worth living". Children are being characterized more and more as entering the world with "unbearable suffering", and as I have already written, Holland is that paradoxical setting where 'unbearable suffering' is met with two answers: one is a very supportive society with resources and will to allow the dignity of life to establish a foothold and two, the ever-increasing tendency to opt to simply end the life of such a child.

My question is, with all this technology at our disposal and with the prospect of it only becoming more advanced and, hopefully, increasingly available, shouldn't we be directing all our thoughts and efforts at giving children a stronger foothold on life? Shouldn't the apparent agenda of 'unbearable suffering' be under siege by technology, or should it merely be used to provide better screening of dysfunctional children so that we can eventually heave a sigh of relief at having created a better race of human? Where is the humanity in that when in 2011 cannibalism still exists in places such as Liberia? The use of technology to filter out 'damaged' children will never change the basic defects that we carry that allow the destructive behavior of thieves, murderers or bully's to be a mitigated element where on the whole we are supposedly still 'contributing'.

The world is a dark place and some believe we need hope and light. You can turn to religion or philosophy to try and better our condition, if the will is there. Most people believe they are contributing or at the very least not damaging. That we need more good in the world is definitely a given.
Bringing more people into the circle of our communal experience, instead of ostracizing them, including by means of technology, should be of the utmost importance for preserving more of a kind of humanity which is, if we look at how those that cannot communicate are considered, apparently waning.


  1. I couln't agree with you more. Your poignant beliefs are so valid and yet so easily overlooked by the mainstream. There are many hidden intelligences that we will never discover. I sometimes shudder to think who we do share our lives with - yet our children are made to feel inferior. We understand the value of their lives and it's our responsibility to make sure that they are recognized - even if it's the person next door. All of that takes a lot of effort, I'm not big on promoting. I prefer to save my energy on their care. If others don't care I really don't give a damn. I'll make sure they're happy and keep them from negativity. I know most people are good and they do try. I just prefer to keep a low profile.

  2. Excellent post Eric. In the end, technologies that can accurately assess intellectual ability of those severely physically compromised may force some supports to be put in place, since we value intellect highly in our society. BUT...woe to the intellectually disabled. Better dead than dumb will be the next motto. As you say...there is fundamentally still no true acceptance.

  3. As always, I am left to think and ponder all that you've written and proposed. I find myself, as the years go by, weary of thinking, though -- so I thank you for pushing me along.

  4. You are so right, my friend,it is the experience of caring for someone who is capable of only receiving unconditional love that is the pinnacle of the evolving world toward some point of higher consciousness. Teillard de Chardin describes it as noogenesis which is human consciousness evolving to a critical point where time and space converge to an Omega Point...our children have arrived there, they are merely dragging us along for the ride. Not in this lifetime, but I believe we are heading there in small select groups. Warmth to Segev and dad...sorry for the delayed response, I was dealing with the Santa problem.