You blind guides, who strain out a gnat and swallow a camel!
Matthew 23, 24.
In memory of Claire Fichefeux
What is a blessed person? One should not have a naïve vision of contempt, ease, and pleasure- a complacent vision. He who has lived free from any sufferings, who is not familiar with the horrors of his time and has managed to flourish, as does a well-watered plant in a vegetable patch, can indeed feel happy; but he is not blessed. I must now put this speech on hold to give you a reminder: the blessed person is far from living this life of ease. He has neither been spared nor had life easy. On the contrary, he is moved by the misery of his time and has enlightened it from the inside- with eternal light. He is spared no drama: he went straight up, straight up onto the cross with the villains, wounded, stained, but pure hearted to the very end. He is a tragedy and a simple one. His name is Jérôme Lejeune and those he wanted to take care of were the peculiar children he loved so much. These children called “Down” in the Anglo Saxon world, who used to be called Mongolian and who, in France, have been called “trisomique” since Jérôme Lejeune’s discovery, called so after what is both the scientific name of the disease and something more than the disease - maybe, almost, a miracle. Becoming more and more of a miracle. An improbable event, anyhow. As Moses when he was saved from the water. As a little Jew, survivor of a world taken over by pharaoh.
And now for the tragedy, the one we all know so well. Jérôme Lejeune’s discovery enabled prenatal diagnosis in order to help, cure, and accompany these children and their parents before the birth but soon this diagnosis was used- nearly always- to track down the little ones and kill them in the egg. But there is this other tragedy, of which we are not yet fully aware, more insidious, less clear: it is the name “trisomique (Down Syndrome) itself- probably irreproachable on a genetic science point of view but humanely doubtful - true for an electronic microscope, no doubt, but which risks blinding us, causing us to lose sight of the slanting eyed, hilarious face that jumps up at you, fails to abide by the rules and seems to come from far, in order to remind us that the most important thing is to be here, now, enjoying the fact of being rather than having, enjoying the surprise of an encounter rather than the exaltation of success.
But I need to explain myself. I need to speak of this Trojan horse which entered within the rank of the defenders of life themselves. I need to show in what way the Professor Jérôme Lejeune was blessed, he who, caught up in the misfortune of his time, enlightened it by his eternal presence…
Discovery of the alphabet and loss of the poem
Genetics is an impediment to ethics. One can make as many jokes as one wants, it doesn’t make it less true that when dealing with genetics, whatever morals we use, we are tempted to enter into a conception of nature which blinds us from seeing its visible form. There is a whole side of science that wants to make us believe that what one sees in a microscope is more real than what one sees with a bare eye. Once a probe had been sent inside living beings, man discovered DNA. And science tried to persuade us it had solved the mystery of life. It is a bit as if, having left on a cruise, someone takes you downstairs to the motor room and declares, amidst the smell of the petrol and the noise of the turbines: “Here is the explanation of the cruise.” But then, you no longer see the sea or the silhouette of this young woman cut out against the blue sky, you no longer hear the seagulls laugh or the discussion of this elderly officer with his grandson, talking about his life…
As François Jacob clearly expressed at the end of the XXth century, « a total change in perspective has come over the world of biology over these past years […]. The living world looks like some kind of Meccano. It is the product of a vast combination, in which more or less fixed elements, segments of genes or blocs of genes, which determine complex operation modules, are disposed according to various arrangements. The complexity brought through evolution comes from new assortments of these pre-existing elements. In other terms, the apparition of new forms, new phenotypes often comes from unprecedented assortments of these same elements.
Go over this text again and read it as though it were dealing with language and not the living. The enthusiasm it might arouse, all of a sudden becomes very relative. It is the enthusiasm of someone who has just found out about the alphabet – that all verses, all sentences, all the words so different in a poem are composed of a finite number of letters and that reasserting these pre-existing elements, using unprecedented combinations of these same letters, enables other words, other sequences to appear… Are we, however, quite certain that these new words will mean something? Speech is, in itself, significant; where the alphabet is only a means to inscribe a meaning, not constitute it…
You have understood that focusing on the alphabet causes one to forget about the poem. One ends up seeing in a living being only a “physiological bag”, a “genetic sequence”. You no longer see the unique and interesting shape one doesn’t need glasses to see: the radiant daisy, the fascinating spider, the peacock, the ostrich, the rhinoceros, the orang-utan, etc. (all those beings which look absolutely like animals that don’t even exist, fantasies of a very fertile imagination). You even end up saying things that show your blindness has become far worse than any physical disease, like for example: Man has 50% genetic heritage in common with corn… Even a chicken (and God knows it knows a fair amount about corn considering the amount it eats) would not make the same mistake as the scientist when he speak like this. Let’s be reminded that this scientist, by speaking like this, has himself 100% of his alphabet in common with Marcel Proust. One rapidly becomes aware of this and although he writes in the monthly magazine La Recherche, what he does has nothing to do with writing Proust’s “Recherche du Temps Perdu(In Search of Lost Time)”.
From donum to data
And now, back to the Trojan horse, to this additional chromosome, to this addition from which originates a subtraction, to this three then, that no longer makes a pair and is used to make a difference: Down Syndrome. It goes without saying that it is a scientific conquest. It goes without saying that this is the first step of a therapy. But Jérôme Lejeune didn’t get the Nobel Prize. He didn’t get it because he felt something was coming, a reversal, a perverted form of everything he was doing. What was needed, he kept repeating, was not first push back Down Syndrome but first welcome the little one, the weak one while pushing back Down Syndrome. We all know his famous sentence, the only one according to him that must command our every judgement, since it is, according to the Gospel, the very criteria of the last judgement : “One sentence, only one will dictate our conduct: those same words given by Jesus: “ What you have done to the least of my brethren, you have done to me”. “ The least he is speaking of here, is not what comes up in a microscope, it is the person that appears in front of you, who calls upon yours gaze, your care, your tenderness.
But there is the problem: taking care of the smallest has now turned into analysing its DNA with a microscope, measuring its body during prenatal scanning and getting rid of it if it isn’t conform to the “bisomic” (as opposed to trisomic, 3 chromosomes) norm… Thus, Jérôme Lejeune felt his discovery was going to be used the same as Jesus’s own law was used- to crucify him.
Because after that, people started saying: He has Down Syndrome.” Before people used to say: “he is a Mongolian” and, yes, maybe it sounded a bit too anthropomorphic, as if people were being classified into races, making a very debatable and dangerous assimilation. At least they were called after a statement made from a visible appearance: we could still see a face. People marvelled at these little beings who looked like descendants of Gengis Khan suddenly appearing in a perfectly French family… Nowadays, they are named after a person who studied their disease: Down. We now only see an incorrect code, a bad move on a chess board, a typing error which, therefore, needs eliminating.
Does one say when given birth to a girl: “it’s an XX”? Does one say: “I’m expecting a XY”? Not yet. But it shouldn’t be too long, in a time in which feminine and masculine are conceived to be gametes suppliers that we reassert according to our latest desire, forgetting the essential evidence: the build, the softness, the roundness of the neckline, the curve of the back… No, it can’t be long in a time in which one erases the poem because of a typing error, even though, with the error, the poem can easily be read, more easily maybe as a poem and not as a spelling or grammar book…
Two bless people
I see this picture of the blessed one: professor Jérôme Lejeune is smiling next to the object of his crucifixion, he is smiling, there, next to the ocular of his microscope which strangely looks like the canon of a gun. And then I remember one of these blessed ones he did not first see as someone “with Down Syndrome” but as a poem of the Lord, and of which he never ceased to speak about the goodness of existence. I remember a blessed one struck by misfortune, the same that happens to every one of us but who, contrary to us, kept a pure heart, enlightening it without reserve with his smile and tears. I remember Claire Fichefeux, who didn’t need to follow the same path as the poor little man of Assisi to embrace poverty like Claire of Assisi, as if we only had inside ourselves, inscribed from the very beginning, the precept of the divine law when there also is in her and those who share her exceptional race, the evangelical precepts. To me, she remains exemplary, as does the professor. The young always young who had Down Syndrome, and Lejeune who had discovered the origin of her evil but testified even more of her well-being.
And here is what I think, if we are to recover the visible. Here is finally how I see it, if it be possible for a child to make a few recommendations to his mother: it is that the church could beatify professor Lejeune and at the same time beatify a young Mongolian girl or boy, or whatever we call them today, a person who isn’t Down but is Up, up in heaven, and who made a miracle after being prayed to, a miracle as great as any of our great “bisomic” saints, why not? This would remind people of the evidence of the smallest one against the microscope view. And all these great chromosome-cutting scientists, genitors anxious about their future success, even the Christians who mistake holiness for spiritual performance would have a simple and pure model of live which might open up their eyes at last.