Lhe “people of the invisible” has a face for us. That of little Hortense, whom her father proudly nestled against his chest as he walked down the corridor of the hospital’s maternity ward. Hortense did not have the life of an ordinary child for long. The confident gazes that one casts on a being who comes to life quickly gave way to the anguished observation of his uncertain gestures.
On the occasion of a routine consultation, the laconic remark of the doctor immobilized my sister, who took the child out of the bassinet. “Little skull. » This observation opened an abyss that never closed between Hortense’s life and that of others. My sister didn’t know that yet. Until then, she had never really paid attention to these people whom we have been told since childhood to “not look at”.
A being of negations
At first, she was content to follow the instructions, to hear the different scenarios possible. The diagnosis of an orphan disease opens a path of solitude for families. Certainties overwhelm and terrify. Uncertainty grinds: no emotion can survive it permanently.
However, a certainty quickly set in, that Hortense wouldn’t walk. The others followed in their time. Cerebellar atrophy, the first suggestive symptom, seemed to seal his fate. Hortense was initially a being of negations: she “wouldn’t walk”, “wouldn’t speak”, “would not eat alone”.
In these hollow reliefs, however, a unique life has arisen. If Hortense does not speak, she thinks and takes part in the slightest glimmers of love, in the most modest joy. To join it, however, we must be capable of a fundamental twist in our way of seeing the world, without prejudging what it should be. You have to accept another way of existing, going against the logic of efficiency and performance. Like Hortense, the people of the invisible questions the mad race in which we are engaged, individually and collectively.
Parents of people with multiple disabilities live at the heart of contradictions. Their existence oscillates between emptiness and resistance. The emptiness of a social environment, often to be created from scratch, in which the handicap can have a place that is not limited to a ramp or to some arrangement of space that would force civility, but either in the middle of others, at the theatre, at the cinema, at the opera, even if this means accepting that the enthusiastic clamors and excessive gestures of those whom one would prefer to be “invisible” offend the codes of the “valid”.
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