/Sophie Cluzel talks about her daughter with Down's syndrome and her commitment to disabled people
Sophie Cluzel talks about her daughter with Down's syndrome and her commitment to disabled people

Sophie Cluzel talks about her daughter with Down's syndrome and her commitment to disabled people

In an interview with the Christian weekly La Vie , the Secretary of State in charge of disabled people confides in her daughter Julie, with Down’s syndrome, now autonomous and integrated into society.

It is rare for a minister in office to confide so long on his intimate, family or spiritual life. The Secretary of State for the Disabled Sophie Cluzel however lent herself to the game in a long interview with the Christian weekly La Vie, published on January 7 in the form of a long narrative in the first person. To read also Sophie Cluzel, from the culinary heritage of her mother-in-law to the happiness of family tables Sophie Cluzel indulges in it, pell-mell, on her journey as a mother of four children; his education and his Catholic faith; the upheaval of the birth of Julie, her daughter with Down’s syndrome; the commitment that followed in favor of disabled people, or even his father’s fight against Charcot’s disease. Her story begins with the birth of her fourth and last child, her daughter, Julie, in 1995. It is a few moments after the birth that the pediatrician announces to her, looking serious, that her baby is probably suffering from Down’s syndrome. “-” So that’s just that? She will live, that’s the main thing! ” This was my very first reaction before I started to cry and Bruno did not collapse, too, in tears ”, then relates the Secretary of State.

“Julia has Down’s syndrome, so what?”

Sophie Cluzel then explains how her exchanges with another mother of a little girl with Down’s syndrome, met via the nuns of the maternity ward, were able to give her hope. Then the help of a CAMSP, medico-social action center which manages the early care of the handicap in 0-6 year olds, and of the Jérôme-Lejeune Foundation. To read also Trisomy 21: the Jérôme-Lejeune Institute, the happy clinic But she also recounts her anger against the doctor, unable to tell him frankly about her daughter’s disability, as well as the inappropriate looks and remarks from those around her. “When I got home, I said to myself: ” Julia has Down’s syndrome, so what? ? ” (…) With Bruno, we did not have time to dwell (…) on the burial heads of our afflicted neighbors nor on unwelcome remarks like “my poor thing, it’s going to be very hard.” It is this upheaval that will determine the personal commitment of the mother of a family in favor of disabled people. “In the year which followed the birth of Julia, I met Élisabeth de Vismes, mother of five children including Françoise, carrier of Down’s syndrome, activist and fervent believer, who is a friend and a compass for me. We created together Growing up at school, an association to allow the education of children with disabilities and the remuneration of school life aids (…) ”. Sophie Cluzel tells how her activism then enabled her to contribute to the drafting of the 2005 law setting out the principle of the right to compensation for disability.

“I had to complete 11 files, almost one every 18 months, to have my daughter’s disability recognized and to receive the compensation she needed” Sophie Cluzel, Secretary of State for Disabled People

Then she said to have been “marked” , during the campaign of candidate Emmanuel Macron for the presidential election of 2017, “by taking disability into account”

. Then appointed Secretary of State for the Disabled, her priority is administrative relief: “Think! I had to complete 11 files, almost one every 18 months, to have my daughter’s disability recognized and to receive the compensation she needed. ”

“Faith in action rather than thought” In this testimony, Sophie Cluzel also discusses her relationship to the Catholic faith. At the time of Julia’s birth, she moves away from her faith, still struck by the death of her own mother, four years earlier, struck down by cancer at the age of 59. “It was cruel, I was so close to her, I needed her presence, her advice so much while I was giving birth to my children. “ To read also “We are recovering parents in tatters”: the difficult Covid year for relatives with Down’s syndrome Today, however, the Secretary of State seems to have reconnected with the faith of her parents – which she passed on to her children – and confides: “Today , I sometimes land on my own in a church to recharge my batteries, be quiet and pray. I light candles for those who came before us: for my mother and for my father, who died of Charcot’s disease and whom I supported until his last breath. I know that my children do the same (…). ” She emphasizes, however, that she “cultivates a faith in action rather than thought” . “The fact of believing in the capacities of the human being is a way of living it fully” , she adds, again testifying to the strength drawn from her daughter Julia’s determination: life: her ability to live in a shared apartment in an inclusive environment, to take the metro on her own every day, to work as a waitress at Café Joyeux in Paris (…). Like many people with Down’s syndrome, she is a vector of social peace in the company. ”
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