« Your difference, it's a doctor who said its name », the mother of a trisomic
It happens sometimes that a day, this day which was to be the most beautiful of their life, the day of the
birth of their child, but sometimes even before, during the pregnancy, or after, a long time after, when the
small one grew, that parents and child are precipitated, with an inconceivable violence, in an unknown world
of suffering and pain. Often some glances, some words, too heavy silences were enough. And from this day, wounded,
wavering, starts for them a new life to which nothing nor nobody had prepared them.
These nourrissons or these foetus, these children or these teenagers, carrying congenital malformation, disability,
serious after-effects of disease or accident, all these porcelains of humanity, so fragile, so vulnerable, which
move, upset, afflict, fascinate or threaten, confront the parents with a major upheaval where are said the loss,
the rupture of the dreams, the hopes in a future, in the lineage, the anguishes of death, the sorrow and hatred.
Then how to think welcome, accompaniment, balance, to hold good, resist, live again? How to help these parents
to live these so difficult moments, to go beyond them and continue their life, with this different child? How
to help these children, constrained in their body and their psychism by irreducible obstacles? How to help these
professionals - summoned by the families, the medical world, the social world, and perhaps by their only vocation
to treat - in their practices and all these emotional movements so strong that they will not fail to know?
How to tell about this world where one usually comes in without striking, by words which are heard and thought
and forever present? How to create, all together, the conditions of a meeting, of a recognition and to make
that life is not, for these parents and this child, "an indivisible core of night "? How to give to
the following days all their chances?
It will be here a question of revelation and accompaniment. Testimonies of parents, nurses and children carrying
disabilities will be requested, the private clinic of the annoucement will be questioned and its sociocultural,
historical and anthropological components will be evoked. What reveals and covers the medical speech? To which
fetish announcement are we still referred? Which mode of designation and nomination underlie the words which
are said, heard or sensed? How to allocate them a function of -vital- opening, where often they are only rupture,
locking up, incarnation of the monstrous, of the failure and of the guilty shame?
All in all, how could these words of the announcement be recognition of humanity but also of otherness? And
more than "how to say them", how to make them audible and signifiant for all?
So that these words leave place to others, so that the disabled child is not only one disabled. So that the
disabled being ascertains first the being, before the disability. So that parents and professionals are not
alienated any more for this only purpose of speech and that in this " extreme situation ", the words
are not written like a destiny.
"I was going to be the happiest man of the world, with the most beautiful baby of the world and I found
myself on a boxing ring, the doctor had gloves opposite me. He struck. I was k.o., in blood, sweat. When I regained
consciousness, Pierre was shouting" the father of Pierre, carrying a spina bifida, says.