Jean-Christophe Parisot, a champion of France’s downtrodden - New York Times - 2012.01.13

2/13/12 Jean-Christophe Parisot, a Champion of France’s Downtrodden - NYTimes.com

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A Champion of France’s Downtrodden, With Limits ofHis Own

Nanda Gonzague f or The New York Times

"I have a very special relationship w ith people. They know I've endured so much that they immediately respect me," said

Jean-Christophe Parisot.

By MAÏA DE LA BAUME

Published: January 13, 2012

MONTPELLIER, France FIVE seat belts strapped Jean-Christophe

Parisot to his seat in a van on his way to a desolate Roma

neighborhood in this city in southern France. A home care aide

carefully stabilized his head and held a telephone to his ear.

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

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Nanda Gonzague f or The New York Times

Mr. Parisot, 44, a deputy prefect in

France, w here he tends to the needs

of immigrants, the poor and the elderly.

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 France calls “social cohesion,” tending to the needs

of the elderly, immigrants and the poor.

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 France’s public administration at an exceptional pace,

he was appointed at 41 as the prefect’s collaborator in the department of Lot, in the

southwest of France, becoming the nation’s first disabled local administrator.

“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 France’s largest communities of Roma, or

Gypsies. He often travels to nursing homes, prisons and troubled neighborhoods.

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

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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 Burkina Faso, in West Africa, where his father worked as an

engineer for the French Navy, Mr. Parisot spent most of his teenage years coping with

fatigue, solitude and the pity that his condition inspired. “I experienced people looking the

other way, the embarrassment of relatives, the disguised hypocrisy,” Mr. Parisot wrote in

his book. “My body was strangeness, my lifestyle eccentricity.”

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 France. He tried to qualify for the presidential race in 2002

and 2007 but could not gather the required signatures of 500 local officials from across

the country.

“I wanted to show that the handicapped weren’t spectators, but actors in political life,” Mr.

Parisot said. His party’s program included increasing France’s budget for disabled people,

establishing legal protections against discrimination toward them and promoting a debate

on sexual assistance for the mentally and physically disabled.

Mr. Parisot’s physical condition and his exceptional determination occasionally intimidate

some of his colleagues. Bernard Andrieu, who worked with him in Lot, said that each of

his visits outside the office required considerable logistics, and that “his work pace

sometimes overwhelmed the people who worked with him.”

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 France. And he says that he has no

qualms about the future, whatever it holds.



A version of this article appeared in print on January 14, 2012, on page

A4 of the New York edition w ith the headline: A Champion of France’s

Dow ntrodden, With Limits of His Ow n.

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“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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Jean-Christophe Parisot, a champion of France’s downtrodden - New York Times - 2012.01.13