Some of the remarks that I am going to make, may come as a shock to you. Yet, I believe it is high time that we pull our heads out of the sand and do a bit of hard thinking about the basic human values involved in the work we are all so deeply engaged in, that we tend to forget that the practical techniques do not fall out of the blue sky, but are, or rather, should be, the offspring of basic ethical norms, which we have kept, up to now, at a safe distance, because reflecting upon them may entail a nasty selfaccusation. It is by no means my intention to pronounce any judgment about any individual person or case. If anyone should feel offended, because a remark seems to refer directly or indirectly to him or her, let it be quite clear to them, that if we condemn theft, that in itself can never imply any form of judgment on a particular thief. This same point of view is fully applicable to all abstractions or generalized ethical norms. The abstraction or generalization is necessary in order to be able to show the consequences involved, but they never imply any judgment of an individual's infringement of a norm.
I am absolutely sure that all the blind participants in this conference at one time or another have been confronted with such consoling remarks from sighted strangers or even acquaintances, as: "If a thing like that happened to me, I'd kill myself." My first reaction in such case usually is to offer this sort of compassionate people a rope and tell them to go hang themselves on the spot. But I also usually manage to restrain my anger, feeling more sorry for them than they do for me.
This reaction to the confrontation with a blind person has nothing to do with lack of education; quite often, it comes from very well educated people. In my own case, I once met an ophthalmologist who expressed the same thing in a generalized way, saying he'd take his own life if he would ever become an invalid, as he put it. The simple fact is, that these people are absolutely sincere in what they say. For them, blindness makes a man so inferior, that life isn't worth living any more. The rejection of blindness is the rejection of inferiority, seemingly in accordance with Charles Darwin's theory of natural selection, resulting in the rejection of the unfit and the "survival of the fittest".
I feel sorry for these people; I feel sorry for all those, who are incapable of seeing the human value in a human personality, a human individuality which does not and cannot depend upon a body with all its defects and imperfections but which depends upon the human mind, upon reflective consciousness.
A number of years ago, (1981) we, "celebrated" the International Year of Disabled Persons, about which I, for one, had very strong doubts long before it started. Those doubts were not taken away during that year. On the contrary! Not even after it. It may sound rather sarcastic, but in a way, I have the impression, that the so-called IYDP ushered in a new era, the era in which to do away with the handicapped. Personally, I did not hear a single voice that ventured to emphasize the value for human society of the mere existence of disabled persons.
A very intelligent, severely handicapped young woman (if this were a newspaper article, it would probably read: "A severely handicapped young woman, who was nevertheless very intelligent ) once said:
"If I had been born in...." (I'll use a fictitious name because you never know in an international gathering like this, if somebody might not be offended; anyway, she said:) "If I had been born in Monte Preto, my parents would probably have thrown me before the wolves." And she added: "I'm extremely happy that I was not born in Monte Preto."
It may come as a shock to you, but is it really so strange, that these backward people react in such a way? Are we, in the more developed world so much better than they are? All right, we don't throw little babies before the wolves because they are born with a handicap. We have developed more sophisticated methods to get rid of them. If we suspect that a child may be born with a serious handicap, we decide to have an abortion. And, our modern physicians are quite capable of finding out before birth whether there is a chance of a baby being born with a handicap. In all modern hospitals, except for some adhering to religious principles, amniocentesis is a daily practice which enables us to ascertain in an early stage if there is anything seriously wrong with the fetus.
I know I am going to get strong reactions to what I am going to add now. I will be accused of emotional rhetoric and my arguments will be rejected on personal grounds, of the same kind, as the ones I was faced with when I articulated these ideas for the first time. Nevertheless, I am going to pronounce them again, with a strong, underlying hope, that I may shock you into a discussion of the basic values involved in our work. I ask you, is there really so much difference between throwing a new born baby before the wolves and having it aborted? The reasoning applied, to authorize the act of getting rid of it, either before or after birth is the same: It is the purely logical consequence of our ethical valuation of a life worth living or not. Though it may sound like emotional rhetoric I want to repeat the last words of that severely handicapped young woman, who said: "I am extremely happy that I was not born in Monte Preto." Nowadays, many a handicapped person might spell out that same remark in a different way: "I am extremely happy that I was not conceived by liberal parents."
Let's come to our senses! Let's implore all medical professionals all over the world, to re-evaluate their ethics, because all this means nothing less than the denial of human value to a human being, on the ground of a defective physique. What's the difference between the killing of psychiatric patients during the Nazi regime in Germany because they were considered to be inferior and useless beings and the denial of life to a defective fetus or the killing of a defective newborn baby? There is no fundamental difference if subjected to the laws of logic.
Modern medicine and not only modern medicine has embarked upon a very dangerous path for humanity as a whole. Our physicians get an almost purely technical training; there is no longer a holistic view of the human being; the human being is treated as a biochemical machine and as a consequence, the difference between life and death is nothing more than that of a physical function and malfunction. I repeat: this attitude towards human life contains no impediment whatsoever against actively ending a life, considered to be defective and therefore inferior. Because, if human value depends upon physical perfection a physical defect is equal to inferiority. Consequently and logically, of course it's only one small step from the decision to terminate a pregnancy, because of suspected defects, to terminating the life of a newborn baby for the same reason, which, whether we believe it or not, happens a lot more than we all know. And I am not speaking of passive euthanasia practices, in which medical intervention is withheld from a baby that has no chance to survive without it.
From a logical point of view, there is only a difference in barrier height between the two acts. The second is one step up the same ladder, as the first. And the next, purely logical step up, is to liquidate adults with the same defects and from there on, all others who are considered to be inferior.
Hitler was a madman, of course he was. But he didn't commit any infringement of the rules of logic. From his vantage point, all his acts were purely rational.
Am I taking my arguments too far? Were those few voices in the 1930's taking their arguments too far, when they warned about Hitler and were not believed? All right, you may say, but our medical professionals are proving their high ethical approach towards human life in their often incredible efforts to save even unsavable lives. And aren't our surgeons doing anything they can, to offer life to a newborn baby, born, for instance, without an esophagus (a gullet), even if, besides that, it is very mentally retarded and has other handicaps as well? Aren't they even going to such lengths as to deprive uncooperative parents of their parental rights over such a child, for the sake of saving its life?
The question is: are they really doing it for the sake of saving the child's life? Aren't they really using the lifesaving argument as a rationalization of something else? Is an artificial heart implant at this point in history a lifesaving operation or... or what? Am I too suspicious if I raise the doubtful thought that many of these pseudo heroic medical struggles are not really being fought for the sake of the patient at all, but for the glory, success and fame of the surgeons? Modern medicine has become a highly technical profession for which not the patient, but the feat achieved on the patient has become the final goal.
I am not accusing our physicians of being potential murderers. I am accusing them though certainly not all of them of holding a false view of the fundamental value of human life, that on the one hand, they swear to protect in the Hippocratic Oath, and will at times even go to the extreme point of absurdity to do so and that, on the other hand, they are unable to recognize in its true, fundamental value of consciousness. However, instead of accusing anyone at all, we had better examine our own consciences and ask ourselves whether we ourselves are so much better than those whom we accuse. How many of us, so deeply involved in our services to visually handicapped infants, that we even dedicate very costly international symposiums to them,would decide not to have or not to advise an abortion, if we knew in advance, that a baby was going to be born blind? I bet most of us, including myself, would have a damned hard time taking that decision. Let's not have any illusions about ourselves. Let's confess, quite honestly, that if we knew in advance, that a baby of ours was going to be born blind, many of us too, would decide to have that abortion.
And yet, the fundamental motivation behind the work we are all engaged in up to our necks, is a struggle precisely against that false view of human value, against the attitude, that approaches other people as inferiors because there is something about them, that distinguishes them from what is considered to be normal. The pretty girl, winning a beauty contest, is really posed as an example of what all girls should be like and consequently, those not reaching such standards, are inferior! That is the basic incentive in all contests: proving superiority over inferiority.
Poor beauty queens! Poor people with healthy bodies! How terribly poor are all those, whose minds are not capable of rising above that sort of superficial and trivial and even banal level! And, mutatis mutandis blessed all those, who because of the hard blows they were forced to suffer in their lives, were able to develop great strength of mind, of spirit and of consciousness the latter of which includes the preceding two. And blessed all those, who a priori had the mental inclination in their characters to share the ranks of the so-called lesser brother, because they and I hope all of you are amongst them have realized, perhaps only subconsciously, that it is essential for the progress of mankind, to wage a constant war on the devaluating attitudes towards human life. For every human being, who recognizes his own intrinsic value, which does definitely not depend upon a healthy and perfect body there is no better cause in life, than to fight the destructive forces of the kind of attitudes that degrade human value to nothing more than physical well-being.
According to the famous French existentialist philosopher JeanPaul Sartre, in his extremely clever, but at the same time extremely depressive treatise: "l'être et le néant", the human mind is a "maladie d'être" a sickness of being, a natural anomaly and therefore an absurdity. Evolution, according to this way of thinking, has led to an absurd product: the human mind, which should never have come into existence. As a consequence, every deviation in this loathsome absurdity, is even more absurd and therefore more loathsome. Fortunately, Monsieur Sartre did not live up to his own loathing, because he became a very much involved man in his way with the social injustices in the world at large.
Why, I ask you, and I think I can give you the answer, though deep down in our hearts we may all find the answer absurd too. Nevertheless, I think that we are the answer, that is, the blind, the visually handicapped, the visually handicapped infants and young children we are all so involved in and all of us, who, one way or another, have a visible cross to bear through life.
"I'm afraid,..." said the hospital chaplain with whom, at the time that I lost my sight in 1972, I had long discussions about the magnificent vision on the evolution of mankind of that other great French thinker, Pierre Teilhard de Chardin, "I'm afraid," he said, "that Teilhard leaves no room for suffering." He was more confused about what was happening to me than I was. There was no pride involved on my part and certainly no religion as an opium. There wasn't really any religious conviction involved at all though I gladly admit that I am a deeply religious man, but at the same time I deny, that that was the cause of my acceptance of my fate,because I reject that kind of religious arrogance and refuse to see God as the boss of a puppet show. My reply to the chaplain was no more than the residue of moments of experience: "You're wrong." I said. "Never before in my life have I experienced such wonderful moments of penetrating into other people's minds and others into mine."
The evolution of life is an unimaginable cosmic game of chances, following a path of complication or complexification of matter which results in ever increasing levels of consciousness. About a million years ago, a threshold was passed, as revolutionary as the threshold of the genesis of life itself: consciousness became reflective; it became conscious of itself; man was born. From that moment on, the process of complication became more and more a willful process of socialization and collectivization, not resulting in, as so many fear, loss of personality, but in an increase of personalization and individualization (which go hand in hand) because true socialization and collectivization are a process of intersubjectivity and intersubjectivity depends on personal involvement and personal involvement depends on personality and individual freedom. What brings about more personal involvement than the seemingly unlucky chances? Would I be confronting you all here and now, if my chances had been otherwise than they were? Would I be doing the job I'm doing if I had not lost my sight and received my Dutch disability insurance? Would I be as deeply involved in this community If I had not married the woman I married?Would I have the most fascinating international friends, acquaintances and relations if my fate had been otherwise? Is it a surprise to you if I dare to say that I love my fate?
If we cast but a cursory glance at history it should be perfectly clear that all innovative movements sprang from very small groups of people, from individuals, at times, from the private initiative of a handful of involved individuals who decided to fight the tremendously strong conservative forces of what is known in German as "gesundenes Volksempfinden" that is, the so-called sound common sense of the masses of the people, which is actually packed full of prejudice against everything that is not deemed to be normal. The word "normalization" for the acceptance of handicapped people in society really implies a repression of the necessity to accept differences as equal in value. God forbid that we should all be normalized!
It is not the shapeless masses, not the mainstream that produce the winds of change. They are, at best, the consolidation of previous winds and even storms at times! You may accuse me of being elitist and I'll plead guilty on one condition: that it be recognized, that the elite I am referring to does not consist of power groups in the socioeconomic sense, nor of an aristocracy, not even of any militant action groups, but of handicapped people, of handicapped infants and even babies, of their parents, their educators, their counselors and all those who deliver services to them. And the strongest of them all are we, the blind, in more than one sense: in the sense of being the best organized group, both internally amongst themselves and externally as far as agencies for them are concerned. Secondly however, or perhaps rather primarily, in the sense of being the group that has the strongest impact, especially emotionally speaking, upon the world around them and therefore acts as a strong catalyst for involvement, often in the initial stage, sentimental involvement which in the majority of cases can very quickly be molded into conscious, intersubjective involvement, especially if the incentive proceeds from personal setbacks in life, be it of a relational or of a physical or mental nature.
We all know to what great heights the human mind may rise, not in spite of, but precisely compelled by physical limitations or so-called anomalies. Therefore I proclaim, that the greatest and most persistent lie on earth since the times of the Roman Empire is contained in the proverb of those times: "Mens sana in corpore sano" = a healthy mind in a healthy body.
NOTE:
A critical remark that a handicapping condition is not in itself a health condition is correct. However the proverb quoted implies the general attitude towards handicaps as a condition of ill health and moreover ill health itself does not necessarily affect the mind either, so that it is fully applicable.