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Sophie Cluzel and Alexandre Jollien: "How do you gain confidence when you are reminded of your difference every day?"

2022-01-17T06:18:37.880Z

Interview.- The first is in charge of disability in the government, the second, a philosopher, was born with cerebral palsy. We brought them together for an unfiltered exchange.



Installed side by side in a living room of the Ministry of Solidarity and Health, in Paris, the Secretary of State to the Prime Minister in charge of disabled people, Sophie Cluzel, and the Swiss philosopher Alexandre Jollien greet each other. They have already met, and the first even interviewed the second for

La Force des differs,

a collection of interviews on disability with personalities, from the singer Gilbert Montagné to the disabled athlete Marie-Amélie Lefur. Born with cerebral palsy, Alexandre Jollien lived in a specialized institution for 3 years when he came of age before having a revelation while reading Plato. He made philosophy his vocation, published bestsellers, such as

Praise of Weakness,

and never ceased to find the way to "unconditional joy".

He publishes an inspiring essay,

Cahiers d'insouciance

, and will soon be appearing in the film

Almost

(released on January 26), a luminous road-movie directed and performed with his accomplice Bernard Campan.

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. - Are the book

The Force of Different

and the film

Presqu

e intended to give greater visibility to disability in our society?


Sophie Cluzel. -

Talking about people with disabilities is important, giving them a voice is even more important, and all means are good. The book allows us to enter the soul of people, when the cinema is a very powerful vector for changing the way we look.

We need people with disabilities

to express their feelings and make themselves known, especially since 80% of disabilities are invisible...

, I wanted to shed light on their place in society and evoke the family and carers through various exchanges, both with Claude Chirac and business leaders like Yannick Alléno, with the journalist Marc-Olivier Fogiel or people who don't were not concerned and who became so due to a debilitating illness, like Dominique Farrugia, and whose outlook has changed.

I address the general public in order to make them aware that their neighbor or colleague may be disabled, that at the school where their children go there are families of disabled children.

That it is necessary to pay attention to the other, which makes it possible to discover a sometimes invisible difference.

Alexandre Jollien.

-

I wouldn't say

Almost

is a film about disability, but rather it deals with the body, with human relationships - it evokes a spiritual friendship between two lost people, an undertaker and a disabled vegetable delivery man, who is somehow desocialized. Both walk towards unconditional joy. Like what is deeply spiritual in our friendship with Bernard Campan, the two protagonists try to progress internally… In my eyes, the great danger is reduction to disability. I find it precious and vital not to reduce a being to a quality, be it that of handicapped person, that of immigrant or foreigner, or even to a sexual orientation. In this respect, infirmity is an open door to the universal, a summary that reveals all the mechanisms of defense, of fear, of everything that we project onto others.I dream that one day we stop labeling each other, and that we value the person in his singularity.

I dream that one day we stop labeling each other, and that we value the person in his or her uniquenessALEXANDRE JOLLIEN

Questioned in

The Force of the different,

Alexandre Jollien, you insist on the search not of indifference but of anonymity of the handicapped people.


AJ -

What hurts me is not so much the reality of disability as the social gaze that excludes by locking people into categories.

It is terribly cruel.

The media have a decisive role in freeing the individual from stigma;

paradoxically, it is about showing that a disabled person is naturally "part of the landscape".

When I take my children to school, I am the only disabled person in the yard.

Is it representative of the wealth of a society?

Everything happens as if a sort of profoundly unfair sorting was taking place.

SC-

This is why we launched this major communication campaign “Let's see the person before the disability!”, which aims to change mentalities. Not a day goes by without my daughter Julia, who has Down's syndrome, calling me to tell me that she was looked at strangely in the metro… We'll have won when the look has stopped discriminating. For the time being, we are far from it, and it is also with this in mind that we are working on a guide for experts on disabilities - just as we have produced a guide for experts for better representation of women in the media. So that the latter think of seeking the expertise of engineers, architects, etc. with disabilities, so that we see them, that we make them visible. We only have 0.6% of people with disabilities in the media,which is absolutely not representative of society.

100% female businesses

BETC - Red Star

From left to right: Delphine de Canecaude (CEO), Brune Buonomano (CEO) and Mercedes Erra (CEO and founder of BETC Worldwide).

BETC-Etoile Rouge, communication and advertising agency specializing in luxury.

Jean-Francois Robert

Pravda Architecture

From left to right: Lolita Llinares (interior designer), Adélaïde Charron (interior designer), Charlotte Cathala (graphic designer), Juliette Baron (interior designer-head of agency), Margaux Borius (interior designer ), Giovanna Fragapane (architect), Laura Gonzalez (architect, founder of the agency), Catherine du Lac de Fugères (executive assistant), Olivia Mexme (interior designer), Léa Zeroil (furniture designer), Justine Frenoux ( interior designer, sitting), Aurélia Chalier (interior designer), Élise Espinassou (interior designer) and Adeline Pitard (research of materials and crafts).

Pravda Architekt, architecture agency.

Jean-Francois Robert

Carolina Ritzler

From left to right: Louise Vallet (studio manager), Narjisse Temmim (CEO), Carolina Ritzler (artistic director), Tatiana Terrassoux (business developer), Ghizlaine Bousselham (digital communication manager) and, seated, Nawel Si Ahmed (purchasing and production).

Carolina Ritzler, fashion label.

Jean-Francois Robert

Marcelle

From left to right: Charlotte Urviez (office manager), Prune Green (network director), Irène Cohen (partner) and Alexandra Delarive (restaurant founder).

Marcelle, healthy restaurant, 22, rue Montmartre, in Paris.

Jean-Francois Robert

Sessùn, fashion brand

See the slideshow

5 pictures

“By its culture, our country does not see the difference as an ally”, say you, Sophie Cluzel.

What do you mean ?


SC-

This is the whole history of disability in France: by delegation of public service, the State entrusted after the war to associations of militant parents the fact of taking care of disabled people. Specialized establishments were then created. There was a great movement of deinstitutionalization throughout Europe in the 1960s and 1970s, but it only started here in 2005 with Chirac's law on equal rights and opportunities, which poses that it is no longer up to the disabled to adapt to society, but to society to adapt to them. We're almost two generations behind, and that's what changes everything. We need to go faster and stronger in setting up an inclusive school, as well as in the professional integration of people with disabilities.We realized that worlds "apart" had to come together. For that I need associations. We must break down the walls that have been built between the ordinary world - school, business, etc. - and specialized establishments. Disseminate the expertise found within the said establishments outside and equip teachers, but also managers and future recruiters, sports teachers, doctors, all the professionals that we must support in this change.sports teachers, doctors, all the professionals we need to support in this change.sports teachers, doctors, all the professionals we need to support in this change.

I no longer want a disability policy apart from Sophie Cluzel

AJ-

We lived in South Korea for three years, I don't remember being laughed at once during our stay. Everything was not ideal, there was sometimes paternalism and pity, but I never suffered any mockery. Integrating children and adults with disabilities in school, in business, in society, is necessary, vital. This challenge requires a lot of tact, delicacy, respect, infinite love. Recently, we listened with my children to a podcast where a writer explained that the presence of a disabled person in a class helped to “edify” his classmates. My 15-year-old son and my 10-year-old granddaughter were struck by the almost condescending tone: basically, you could believe that you were instrumentalizing the stigmatized person without considering them in themselves.I was happy to see that children were aware that a so-called different person was a being in their own right. Integrating it may be good for others, but that cannot be the primary intention. Why impose new injunctions on an already marginalized person? Why should it serve as an example, as an edification? Rarely are individuals considered beyond categories. A child has a problem. Why exclude it? Why systematically distinguish it and indulge in this moral stuffing that instrumentalizes and reifies an individuality?Why impose new injunctions on an already marginalized person? Why should it serve as an example, as an edification? Rarely are individuals considered beyond categories. A child has a problem. Why exclude it? Why systematically distinguish it and indulge in this moral stuffing that instrumentalizes and reifies an individuality?Why impose new injunctions on an already marginalized person? Why should it serve as an example, as an edification? Rarely are individuals considered beyond categories. A child has a problem. Why exclude it? Why systematically distinguish it and indulge in this moral stuffing that instrumentalizes and reifies an individuality?

A child has a problem. Why exclude him?ALEXANDRE JOLLIEN

SC -

In our semantics too there is progress to be made. We talk about inclusion but, I'm sorry, I'm talking about schooling and professional integration. The environment must be inclusive, but Julia was not “included”, she was educated… This is also why I asked the President of the Republic for my attachment to the Prime Minister. I don't want a separate disability policy anymore. You haven't had a single Cluzel handicap law. On the other hand, in the School of Confidence law, the education of disabled children was included as a priority. It was about transforming the common law and the public policies of each minister. We had five interdepartmental committees, because that's how we really work on the substance of societal change.

Your book

Cahiers d'insouciance,

like the film

Almost

, insists on the gravity of the gaze of others...


AJ -

Bernard Campan often tells journalists that the film was below what I get in the face of every day. It was not a question of accusing, but of revealing. Talking about an individual in the third person, using familiarity, can humiliate and generate a fundamental insecurity that invades the field of daily life. How do you gain confidence when you are reminded of your difference every day? I often say that I feel like I have a piece of excrement on my head when I walk outside. We take the metro quietly and clack! the gaze of others reveals the stigma. Added to this is the imperative to be kind. Erving Goffman evokes it in

Stigma

: not only is the marginal person summoned to be silent, but he must also take upon himself the fact that he is not accepted.

Cruel double trouble!

Talking about people with disabilities is important, giving them a voice is even more soSophie Cluzel

Sophie Cluzel, has your perspective changed a lot with the arrival of a child with Down syndrome?


SC-

I had a very negative conception of trisomy. I imagined the ineducable person, because you are told about maladjustment, incompetence, deficiency. This is where the associative force is so important. I met mothers who gave me the possible, who made me project myself. I will never repeat it enough: never stay alone. It will save you a lot of time, you will be given the tips and tricks by which other parents and children have compensated for the difficulties linked to the handicap, and that is how you recover… All situations of difference are shocks , because we are so standardized in our education, we have so many preconceptions about appearance, that we can't manage to have a natural attitude. I have always remembered what I was told at birth: Julia,we have to see that it's a little Cluzel before seeing that it's a little girl with Down's syndrome. This guided me throughout the education I gave him.

Listen: the editorial staff podcast

We can try to change the way others look.

Can we also learn to "let go" as you say, Alexandre Jollien, in

Cahiers d'insouciance

?


AJ

-

Carefree notebooks

addresses two areas that may seem a bit contradictory.

They owe a lot to the Tibetan master Chögyam Trungpa.

The first is to free oneself completely, to no longer live in fixation, to progress towards non-fear, carelessness.

This detachment can lead to emptiness, precisely, if there is no generosity, no commitment to a more awakened, more united society.

So inner freedom, unconditional joy, freedom from sad passions - anger, resentment... - and also social commitment.

These are two keys to a burning topicality.

I can commit all the more that I am freed from my baggage, from my traumas, from the weight of what will be said.

Don't you have in common to have gone from individual to collective questioning?


AJ-

Life and joy have never been taken for granted, not so much because of the disability as the scars left by a very harsh upbringing, separated from parents and devoid of affection, in an institute where staff were asked not to get attached. I lived there from 3 years to 17 years old, we only went out once a week and there was no contact at all with the rest of the population. It was like a parade, and I almost felt like a parasite. It's a very violent self-image… At the same time, the aspiration to unconditional joy and the solidarity received nourished me and led me towards philosophy. Today, my vocation is to transmit, whether through books or this film, such precious existential tools.

The aspiration for unconditional joy and the solidarity received have nourished me and led me towards philosophyAlexandre Jollien

SC -

I am hyperactive by nature, and I have always rebelled against discrimination. People kept telling me that Julia couldn't play sports, music, and so on, with the other children: "It won't be possible, it will be too complicated, I won't be able to do..." As we must constantly open doors, we must be together to be stronger. So I immediately created groups of associations regardless of the type of disability, especially since coming out of your own experience, being able to broaden the spectrum of people's needs, is also enormously enriching. Hence the need, for me, for very generalist policies: together, we are stronger when we talk about the difference, whatever the difference.

The Strength of Different,

by Sophie Cluzel, Éditions JC Lattès, 198 p., €19.


Cahiers d'insouciance,

by Alexandre Jollien, Éditions Gallimard, 224 p., €18.50.

The editorial staff advises you

  • Competent and ambitious: don't call them "disabled workers" anymore!

  • Mohamed Mbougar Sarr, Prix Goncourt 2021: "When I was young, I played Scrabble a lot!"

  • Pierre Rabhi: "Drawing inspiration from nature to find the light"

Source: lefigaro

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