Sophie Cluzel talks about her daughter with Down syndrome and her commitment to people with disabilities

“Julia has Down syndrome, so what?”

Sophie Cluzel then explains how her exchanges with another mother of a little girl with Down’s syndrome, met through the nuns of the maternity ward, were able to give her hope. Then the help of a CAMSP, a medico-social action center which manages the early management of disability among 0-6 year olds, and the Jérôme-Lejeune Foundation. Read alsoTrisomy 21: the Jérôme-Lejeune Institute, the joyful clinic But she also recounts her anger against the doctor, unable to tell her frankly about her daughter’s disability, as well as the inappropriate looks and remarks of those around her. “When I got home, I said to myself:

” Julia has Down syndrome, so what? (…) With Bruno, we did not have time to dwell (…) on the burial heads of our neighbors distressed nor on unwelcome remarks like “my poor, it’s going to be very hard”. It is this upheaval that will determine the personal commitment of the mother of the family in favor of disabled people. “In the year following the birth of Julia, I met Elisabeth de Vismes, mother of five children including Françoise, carrier of trisomy 21, militant and fervent believer, who is a friend and a compass for me. We created together

Growing up at school, an association

to allow the schooling 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 disability compensation.

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

Then she says she was “marked”, during the candidate’s campaign Emmanuel Macron in the 2017 presidential election, “by taking disability into account”. Then appointed Secretary of State for People with Disabilities, her priority is administrative relief: “Think! I had to fill out 11 files, almost one every 18 months, to have my daughter’s disability recognized and receive the compensation she needed. )

“Faith in action rather only in thought” In this testimony, Sophie Cluzel also discusses her relationship to the Catholic faith. At the time of Julia’s birth, she moved away from her faith, still struck by the death of her own mother, four years earlier, mowed down by cancer at the age of 59. “It was cruel, I was so close to her, I needed her presence so much, her advice as I gave birth my children.” Read also “We recover parents in tatters”: the difficult Covid year for relatives of 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 sit alone in a church to recharge my batteries, be quiet and pray. I light candles for those who have gone 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 stresses, however, that she “cultivates a faith in action more than in 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 the determination of her daughter Julia: “I feel a lot of pride for what she does with her life: her ability to live in shared accommodation in an inclusive habitat, to take the metro alone every day, to work as a waitress at happy coffee in Paris (…). Like many people with Down syndrome, she proves to be a vector of social peace in the company.”

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