Interview

A magazine by people with autism. Le Papotin, a magazine produced entirely by people with autism, was born 20 years ago in a day hospital in Antony, south of Paris. The 3,500 copies of this full-colour A3-size magazine are only available by subscription, and feature articles by people with communication disorders alongside interviews with well-known politicians and other celebrities (Leos Carax and Jacques Chirac are two examples; Carla Bruni, who they interviewed in 1998, is another). Papotin is a well-known puppet in France, and papoter is French for chin-wagging. The interviews are hence laid-back, fun and a touch offbeat chats. This magazine’s staff are also referred to as papotins, as indeed is content bearing its hallmark editorial style (as in, “Hey, that’s papotin!”). Driss El Kesri is a former French literature professor who now heads the educational department and a multidisciplinary team at the Centre Françoise Grémy (which covers a number of sites, including the one in the Santos Dumont day hospital in Paris), and the magazine’s founder. He explains: “There are autistic people in every country, in Africa, as much as in the Americas, in every tier in society, in rich neighbourhoods and in poor neighbourhoods, in working-class families and sophisticated educated families. About 6 in every 1,000 people have autism.” We met him after sitting in on the Editorial Board meeting, which takes place every Wednesday at Le Lucernaire, a theatre in Paris.

How has Le Papotin changed over the past 20 years?

It has changed a lot. But the goal hasn’t: it is still to open up the options for human and social exchanges for people with autism. The magazine is an excuse to approach other people. Young people with autism perceive the world in their own particular way. Before starting the magazine, I had noticed that they watched a lot of TV. It was the price to pay, so to speak, their way of dealing with loneliness. But they didn’t go out. And what is going on out there in the street is also part of life. So, besides the magazine, I started organising outings and trips for groups of three or four of them. We went to Los Angeles once. There, one of them, who was hooked on the Beverly Hills, 90210 TV series, met Tori Spelling, one of the stars (it was a dream come true for him!). We’ve also been to Corsica, Morocco and Russia. Stepping out of our environment helps us to step out of ourselves.

What did you want to write about in the magazine?

I was teaching in Antony at the time. The main goal was to get these young people out from where they were. But it wasn’t just to go out places (there are other more conventional workshops to get young people off the couch): there was a cultural agenda, too. And we wanted to create something. I guess the fact that I used to teach literature had something to do with that. They rarely actually write their articles: they usually record them and I transcribe them. I don’t change a thing (besides the stammering, long pauses, and so on, of course). Sometimes, they come up with a whole article and know it off by heart from beginning to end. They can’t write it down but they can dictate it in all in one shot, no matter how long it is. Ordinary people couldn’t do that. I think they call that dictating to adults, it’s a teaching technique.

What is autism, really?

In French, at least, it has become a worn-out term to refer to someone who refuses to listen or change his mind. Politicians sometimes say their rivals in the other party are “autistic”. But autistic people are really people with communication disorders (encompassing verbal or non-verbal communication, feelings, facial expressions, connections between trains of thoughts and interlinking ideas). That means that they also have behaviour disorders. They think they might panic when they have to interact with others and clam up, and people might interpret that as rejection or assume that they would rather be left alone. There are thousands of examples. Take Arnaud, for instance, before the editorial board meeting this morning. We’ve known each other for 20 years. He was one of the very first papotins on the team. We bumped into each other coming here in the Metro earlier today. He wasn’t expecting it and that disturbed him. It’s a bit like young children, who can’t recognise their teachers outside school because they are so used to seeing them in one precise setting. But, if you are there with Arnaud, to ease him into a new setting where he has to find new bearings, he is a lot less uptight. There, autistic people are “almost” not autistic any more. Arnaud is also very picky with food. He only eats things he knows. He can throw a tantrum if he sees a leaf of parsley on his plate. But, when he came with us to Morocco, he ate everything he was given.

How does the magazine tie in with what the hospital is doing?

The day hospital provides a wide variety of services for the people it takes into care, including schooling and after-school tutoring, medical and psychotherapeutic care, general patient care (everything from dressing wounds to psychomotility), re-education (speech-language therapy, for instance), social benefits and the like. It is also trying to do more non-medical, “non-professional” work. The day hospitals that the autism team in our association (L’Élan Retrouvé) work with have blazed new trails by creating a number of cultural workshops that are now networking (covering music, acting, singing and painting). And doctors say that that they have managed to do that in part thanks to Le Papotin’s success with the general public, the fact that young people enjoy working on it, and the incentive it provides for other initiatives. Les rewards that Le Papotin and other cultural workshops provide for the teams and families make it easier to face and deal with more serious and tougher issues on the technical side.

Is your magazine part of the treatment?

Le Papotin isn’t a form of therapy. It’s been around for 20 years and hasn’t cured any autism. But it is part of an amazing development process, an amazing socialisation process. When we started out, there were four of us crammed into a room. Now there are 40 of us. We can now go out into the world without making big headlines, without in-yer-face journalists casting spotlights on “behaviour disorders”. To the contrary: Le Papotin takes out the sting. It casts a new light on the whole issue. The outings are sometimes very intense from a symbolic standpoint. Interviewing Jacques Chirac, when he was President, in the Presidential Palace, was probably an interesting step. It was the State, the Republic, acknowledging people with autism. That was not new, but it was not compassionate either: it was responsible and respectful.

Is illiteracy an issue among people with autism and is Le Papotin a way of dealing with it?

Illiteracy is not a word we use very often, no doubt because, until now, only people with very mild cases of autism went to school. Autism may or may not be associated with a mental handicap, and that mental handicap can be more or less severe. A few of the autistic people here score 140 on IQ tests and others are intestable. Many of them have never learned anything at school as such. Le Papotin has always been about rekindling their interest in words, in text, in spoken and written communication, even among youths who speak little, say the same things over and over again, or refuse to speak altogether. The notion of illiteracy will probably be back in vogue now that a new (2005) law requires people with autism to attend school (make that “requires state schools to take them in instead of turning them away”). So their academic level will improve. It’s just the beginning but four of the twenty teenagers at our day hospital are going to school part-time (three are in Lycée Montaigne, a senior secondary school in Paris, and two are in Hauts-de-Seine, west of Paris). And their level has improved.

Coming back to your magazine, tell me about your editorial staff.

The Editorial Board meets every Wednesday. There, we jot down leads and ideas we get from whatever is going on in the news, or guests we are going to interview. Rule number 1 is that, when one of us is speaking, the others listen. Rule number 2 is that we never publish anything without the author’s explicit consent (the authors are the last ones to emend their articles before they go to press). Members of the editorial board suggest topics and the board as a whole decides which ones it wants to pursue. The papotins come from 13 institutions in and around Paris. The magazine started in the day hospital in Antony, stretched to Santos Dumont hospital in Paris, and several friendly special-education institutes have since started sending us a few of their students. Then word of mouth attracted more member. For some of them, who aren’t in care anymore, it’s their only social interaction. The others come with their tutors.

How is Le Papotin funded?

We only had very modest funding from the hospital for the first to issues, so we ran it on a shoestring (we paid for printing costs but the rest was all pro-bono). When we were working on the third issue, in 1992, we met Marc Lavoine, a singer, and he became our association’s second sponsor. The first one was Howard Buten, an artist (his stage name is Buffo), writer (When I Was Five I Killed Myself) and psychologist specialising in autism (at the Adam Shelton education centre in Saint Denis, north of Paris). Marc presented the magazine and a film on Tous à la Une, a television programme hosted by Patrick Sabatier, and our subscriptions went through the ceiling that year – so we started printing it in full colour. Le Papotin then won a prize from Scoop en Stock, a special-education magazine. The French Ministry of Education has been providing support on a regular basis since 1994 and Paris City Council kicked in later on. Today, Le Papotin – Fenêtre sur la ville, the association that supports the magazine, only has to cover publication costs (layout, artwork, paper and colour printing). It has no overheads. Tutors in centres cover logistics costs (the Wednesday morning editorial board meetings) and volunteers help us out with a few of the outings (to cultural events or meet guests).

So no funding problems…

I can’t really say that. Sometimes, when our finances are in the red because grants are late or – as sometimes happens – dry up, we just don’t publish it. It’s as simple as that. But we never put the workshops and outings on hold. The Wednesday meetings in Le Lucernaire take place whatever happens, and we invariably have a great time reviewing the new articles that come in. We only pay the rent for the room, which the hospital covers. Then, when we have enough money, we publish the magazine. So we often release thick double or triple issues to catch up. We could have a website to post articles as we release them. We have been taking it one step at a time for years and we’re not there yet, though. This is where we need help. We could train three papotins working in ESATs (centres providing care through employment) to revamp the website.

Simone Veil, Rama Yade and Philippe Caubère are only three of the many celebrities that you have interviewed. Why do you need those big names?

For two reasons. The first one is that our autistic youths watch so much television and listen to so many radio programmes all by themselves that they often know more about people they see and hear there than about their nearest and dearest (which, in their case, are a restricted circle). There is a paradox in there: they are likelier to be spontaneous when they are talking to a celebrity than with an ordinary stranger. The second reason ties in with the magazine that the homeless in New York published some time back now. They had an honest and worthwhile message to get across but they only managed to get it across because celebrities threw their weight behind it. And it means that the headlines that our youths see on the front page of their magazine are not far off the ones they see on newsstands or at home. For the first issue it was Howard Buten, for the second it was André Dussollier (an actor) and for the third one it was Léos Carax (when he released his film The Lovers on the Bridge). That took us to the next level: many of the media were jealous back then because Leos Carax practically never gave interviews!

The amazing thing about these interviews – especially the one with Carla Bruni in 1998 – is that they feel like rambling chats but there is a lot of truth in them. How does that happen?

It’s really difficult not to answer their questions because there is nothing twisted or spiteful about them. Our “atypical journalists” can be very disarmingly blunt but they never set you up. The questions they asked Paris City Mayor Bertrand Delanoë and his candid replies are only a few examples.

Has anyone they interviewed ever felt uncomfortable?

No. Like Carla, most of the people were quite comfortable with the interviews. The few who weren’t were the ones who had made an effort to come just to be nice – which is not at all what Le Papotin is about. One of the most memorable politician interviews was the one with Jacques Chirac. His amazing poise, his categorically serious but nevertheless amusing answers, and the fact that he took his time impressed everyone on the team. Another particularly beautiful highlight was a Cercle de Minuit cultural television show with Maxime le Forestier, Marc Lavoine and Christophe Allwright, in 1994. I have heard people say that it was one of the best parts of the show. It’s on video, too.

What happens after the interviews?

We see a few of the people we interview on a regular basis afterwards, on cultural outings or at concerts. Sometimes it’s more laid back. Arnaud, for example, doesn’t like birthdays. One year, we decided to ask him what he would like anyway. He answered, “Dave and Carla Bruni.” Sophie Boudre, one of the pro-bono facilitators at Le Papotin, organised the birthday party at her home in Levallois-Perret, outside Paris. And they were there, with other people such as Maureen Door, Gwendoline Hamon, Franck Margerin and Howard Buten.