It starts frontal. Two angry little pages wrung to the bone. It is about blood, snot, flesh and excrement. The blood from a bite that his brother inflicts one day on his mother, the trickle of drool that flows from his mouth, this body abused by too many operations, the turds that float in the bathtub and that must be picked up by hand. hand. There it is. And finally said. “I don’t want to be silent anymore,” writes Anne-Laure Chanel. An introduction like an uppercut for the reader and a painful deliverance for the one who grew up with a little brother with multiple disabilities in a family that was nevertheless infinitely loving. “It was an evening in February 2013,” she apologizes in a soft voice. I was angry. I wrote a page to dump it. It did me good. So I continued. The two hundred pages that follow do not spare the reader any more than this “Sister without noise” whose rhythm of life, like that of her family, is organized around this defenseless “tyrant”. “I am told that my parents are extraordinary, courageous, admirable,” she smiles. And that’s true. So, faced with the immensity of parental responsibility, we do not feel legitimate to suffer or even to speak out. The penalties for siblings are always lower than for parents. I had to wait until I was 40 to admit that it concerned me too! And we had to wait for this book for this voice to be heard. That of a child who, at 3 and a half years old, sees the arrival of Léon and Paulin, twins born prematurely: the first who will grow straight up, a peaceful double and in solidarity with the second, who in “his haste to see the light of day” made a cerebral hemorrhage. It is he who will organize family life from now on. He in his strapped chair, he who must be made to eat, sleep, carry, wash, he who must be kept watch, animate, stimulate. He who occupies the living room when nurses and doctors come and the children must speak quietly or slip away. He who at each meal risks the “wrong path”, he who screams for hours, days, he who “prevents” from going on vacation, interrupts meals, TV or imposes silence after 8 pm. Him and the noise of the tires on the tiled floor, the clicking of the straps, the comings and goings of parents at night. “As if he was absorbing all possible place in the family, as if he was stealing it,” she wrote.
“Faced with the immensity of parental responsibility, we do not feel legitimate to suffer or even to speak. “
How to assert yourself and be light enough not to weigh on parents overflowing with worry and time for this little brother? How to like it? How not to love him? And this damn place that must be invented. For Anne-Laure, it will therefore be quiet. As a good student, as a shy, as an invisible. We smile when she tells France Culture about the profession of director she dreamed of, then chose: a job in the shadows, lasting hours in an editing cell where, her colleagues tell her, she “does things. gently “. A profession for which always listens and almost never speaks. “It’s true that we make ourselves invisible on the radio,” she agrees. I have often been told that it is a medium for the faint hearted. But for me, it was also something else. Like an opening to the outside. When my brother cried, screamed incessantly, I covered my ears with those unfamiliar voices. And I never knew what was coming, what song, what voice, what story. I who lived surrounded by sounds so repetitive, so predictable, found there a little unexpected. However, it is through sounds that she forges her bond with this brother. With the “noise cassettes”, soundtrack of this strange house, a door, the meal we are preparing, the roar of the 405, a cartoon credits, the laughs of Paulin, the “no” of Paulin . She and her brother Leon make him listen to it, over and over again. Growing up, Anne-Laure adds Phil Collins, Heaven 17, then classical music, contemporary music, watching for a sign on her brother’s face. Or a laugh. “This desire to share moments with him is not not to love him. A bond of their own, hacked with the means at hand in a family that deploys treasures of invention to create a real life for five. A mother institute with a brazen energy who in kindergarten sometimes manages to keep Paulin in school before the obstacle course begins: finding a guard at the house, snatching a few half-days in a medico-educational institute (IME) then finally the whole week. A mother who sets him up at night on a floor mat in the living room so that he can stretch out his stiff limbs and watch TV. A dad tinkering with a device on wheels that keeps Paulin upright with free legs or a competition wheelchair. And even an elevator.
But the sister silently sometimes falters. Muffled. In adolescence, she begins to utter long, silent cries. Seized by attacks of panic, the body falters, bends under the anguish. Anger tries to find its way. And with it the guilt. The feeling of betrayal. When he infuriates. One day when she has to watch over him, she lets him “eat grass without reacting”. Another time, when she has become an adult, a nightmare night in the family house where Paulin is screaming in the next room and where the image of a knife comes to her mind. What if he disappears? What if it was a relief? What if she was a monster? “It was only after having read the first drafts of the manuscript that my mother told me that she had thought about it too,” says Anne-Laure. That she would perhaps be more serene if he was no longer there. I thought I was the only one in the family who was a monster. Without this book, so much would not have been said. As a family, we only talked about his health, about everyday life. Not what we felt. And I never mentioned my “family dissonance” with my colleagues. The tears would have flowed too quickly. ”
And after ? When or if the parents are no longer there? The siblings do not talk about it either. She read, upset, Jean-Louis Fournier’s book, heard Jeanne Auber on the radio, saw Sandrine Bonnaire’s documentary, listened to Alexandre Jollien talk about disability as an “absolute master”, who governs, dominates but teaches and makes people grow. . She even called the actor Michel Creton who, in 1989, snatched an amendment to keep disabled young people in a House of Special Education while waiting for a place in an adult structure. But, basically, leave the hand to the parents. “I am not very up to date on current support,” she admits. And I couldn’t decode pyelonephritis like my parents at a glance. I sometimes tell myself that he will leave before them. Or that they want to go after him. She hesitates, as if to protect her brother, but resumes, enraged against the shortcomings, the negligence of institutions, “families too often left to their own devices”. Paulin’s parents moved mountains to find him a specialized reception center. He comes home every two weeks. And she ? “It is now that it is written that I miss my brother. I think I didn’t want to recognize him because I was too monstrous to love him. Today, I feel like I don’t have my shoulders hunched in anymore. To stand more upright. ”
“Sister without noise. Growing up with a different brother ”, by Anne-Laure Chanel, Éditions du Rouergue. The FratriHa association in Belgium supports the brothers and sisters of people with disabilities. Interview to be found on elle.fr
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