A Champion of France’s Downtrodden, With Limits of His Own
By MAÏA DE LA BAUME
He might have looked like a patient being transferred to a hospital, but for Mr. Parisot, 44, one of the highest-ranking civil servants in the region of Languedoc-Roussillon, it was just another day on the job. At the age of 10, Mr. Parisot received a diagnosis of limb-girdle muscular dystrophy, a rare genetic degenerative disease that has, so far, paralyzed his torso and most of his limbs.
On average, people with his condition die when they are 30 to 40 years old. So Mr. Parisot, whose two sisters have the same disease, has learned to live with the knowledge that he probably does not have many years left. “I often tell my children that the quality is more important than the quantity of years,” he said.
In a country where only 35 percent of physically disabled people are employed, Mr. Parisot has been a trailblazer all his life, and he recently became the first disabled person to be named a deputy prefect. In that capacity, he is in charge of what
His nomination as deputy prefect was surprising in a country where success stories like his are rare. It was “a signal,” he said, to show disabled people that they can attain the highest goals. President Nicolas Sarkozy said as much at the time of Mr. Parisot’s appointment. “I’m going to appoint a quadriplegic man as a prefect, not for his handicap,” Mr. Sarkozy said, “but for his competence.”
Mr. Parisot cannot write by hand or type; he endures four hours of medical treatment every day and can breathe only with mechanical assistance. His office is constantly kept at 80.6 degrees Fahrenheit to help him make use of the last remaining working muscles in his hands. But he can talk, and he speaks slowly and eloquently. He has an exceptional memory, and he works 60 hours a week.
His ability to talk about his disability without reserve, his limitless ambition in a steadily weakening body and his political connections developed at the elite Institut d’Études Politiques de Paris, better known as Sciences Po, have made him an unofficial spokesman and role model for many disabled people.
“He is so handicapped that what he did is exceptional,” said Philippe Van Den Herreweghe, a disabled friend in charge of disability employment policies at the French Education Ministry. “Mr. Parisot has helped change the glances of others, to change attitudes and reduce prejudice.”
Mr. Parisot’s life, in a country where he says physical and mental disabilities are still seen as “human tragedy,” has been one of firsts.
In 1989, he became the first handicapped student to graduate from Sciences Po, where his wheelchair would not fit into the building’s ancient elevators. (A friend managed to narrow the width of the wheelchair by removing some screws, forcing Mr. Parisot to sit for eight hours every school day in a cramped seat.)
Moving up through the hierarchy of
“I’m not the typical civil servant locked in my ivory tower,” Mr. Parisot said in an interview. “I have a very special relationship with people. They know I’ve endured so much that they immediately respect me.”
With four permanent assistants, Mr. Parisot works to reduce the isolation of the elderly and improve living conditions for one of
HE has learned to conduct his life with the same speed and determination with which he steers his motorized wheelchair along the narrow corridors of the prefecture. He has written six books, including a novel, an essay on theology — he is the youngest deacon in France — and a biography of a distant cousin, Frédéric Chopin, while raising four healthy children with his wife, Katia.
“My wife and I wondered many times if we had the right to have children,” Mr. Parisot said, adding that doctors told them there was a 3.5 percent chance that their children would inherit his disease.
Born in 1967 in what is now
While his schoolmates were taking swimming or soccer lessons, Mr. Parisot was writing to all the descendants of Napoleon’s generals to ask about their ancestors’ battles.
His parents learned that they were carriers of the disease when their first child was 7, and then watched as their other two children developed symptoms. Back in the 1970s, Mr. Parisot said, limb-girdle muscular dystrophy had not even been identified as a discrete disorder. Nevertheless, all three siblings have made constructive lives for themselves; one of Mr. Parisot’s sisters is an engineer, the other a parliamentary aide.
“I told my children that even if they didn’t have legs, they would always have their brains,” said Martine Parisot, Mr. Parisot’s mother.
After years in the Civil Service, some at the Education Ministry, Mr. Parisot co-founded in 2000 the Collective of Disabled Democrats, a party aimed at defending the interests of the six million disabled people in
“I wanted to show that the handicapped weren’t spectators, but actors in political life,” Mr. Parisot said. His party’s program included increasing
Mr. Parisot’s physical condition and his exceptional determination occasionally intimidate some of his colleagues. Bernard Andrieu, who worked with him in
But Mr. Parisot has learned not to be shy. In 2007, he met with Claude Guéant, then chief of staff to Mr. Sarkozy and now minister of the interior, and told him that he wanted to be a prefect.
“Mr. Guéant asked me if I would be able to hold a meeting with 50 people,” he said. “I said yes.”
While constantly fighting fatigue and declining health, he denounces a world made only for “bipeds,” and is particularly critical of French companies, which rarely follow government quotas to hire more disabled people.
But he takes heart that two years ago a second disabled civil servant was named a deputy prefect, this time in the tiny Gers district, in southwest
“I don’t fear living, and I don’t fear death either,” he says. “I believe in God, and he knows what is good for me.”
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"The master class has always declared the wars; the subject class has always fought the battles. The master class has had all to gain and nothing to lose, while the subject class has had nothing to gain and everything to lose--especially their lives." Eugene Victor Debs
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