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Down Syndrome Glossy Gets off "Pity Train"

DW staff (jen)December 9, 2004

In Bonn, a seriously stylish magazine created by people with Down syndrome is putting a new face on dealing with disabilities.

Politically correct or not: some of the makers of OhrenkussImage: Herby Sachs www.sachs-foto.de

Ohrenkuss -- "ear kiss" -- is a one of a kind project: a good looking, glossy magazine written for a general audience, but overwhelmingly created by people with Down syndrome.

In each issue its writers, all of whom have varying degrees of Down syndrome, approach a different, broad topic from many angles. Recent issues have been entitled "Good and Evil"; "Fashion"; "In the Night." There is no reporting per se. Rather, the writing is a collection of commentary, fact and opinion that takes on an almost poetic literary quality.

Katja de Braganca, a geneticist who wrote a thesis on the subject of Down syndrome, started the project seven years ago with a grant from the Volkswagen Foundation.

Titelseite des aktuellen Ohrenkuss Heftes Nr. 13 Oktober 2004
Ohrenkuss, the October issueImage: www.ohrenkuss.de

In applying for money to start the magazine, her aim was to "explain about Down syndrome to readers," she said. "I didn't want to take part in the hard-line politics" that many associations with people for disabilities propagate, de Braganca told Der Spiegel magazine in a recent interview.

A new approach

"(Other literature by the handicapped) would say things like, 'In the Nazi era I would have been killed. But the looks of people today do the same thing to me.' Reproach alone reaches nobody. That kind of publication pushes victimization, it is discrimination against oneself," she told Der Spiegel. In the end she won the Volkswagen Foundation grant against 60 other applicants, "who were all out to get on the pity train."

Today, Ohrenkuss manages to support itself through subscription sales. De Braganca said it would be too expensive to produce the magazine for newsstand distribution.

The name is as unusual in German as it is in English. De Braganca explained how she came up with it, during an early editorial meeting. "One of my colleagues suddenly stood up and gave me a kiss on the ear. Just like that. Everyone sitting around the table shouted, 'Ohrenkuss!' I knew right away, that would be our title," she told Deutsche Welle.

A different kind of writing

For the magazine, then, Ohrenkuss refers to the things you hear that go in one ear -- but don't go out the other. "So much of what we hear just gets forgotten," explained de Braganca. "But things that leave a mark on your mind -- like the things our authors write -- those are ear kisses."

Michael Häger, Ohrenkuss Teammitglied betrachtet einen Text auf dem Bildschirm
Michael Häger, one of the magazine's writersImage: Herby Sachs www.sachs-foto.de

Her personal revelation that people with Down syndrome tend to write in a memorable style led de Braganca, then working as a geneticist, to come up with the idea for the magazine.

While attending genetics conference, she came upon a text about Robin Hood, hand written on one sheet of paper, by a man with Down syndrome. "He had summed up the whole story in a few short sentences. I was fascinated. How he could write so beautifully, so short yet so exciting," de Braganca said. "The writing of (people with Down syndrome) is different. It is short and always to the point, and they have an unusual point of view."

At the time, de Braganca's work brought her into contact with parents of Down syndrome children. Often they were desperate because they had been told that the children wouldn't be able to read, write, or even go to the bathroom alone, though there are many different degrees of Downs syndrome handicaps. She was eventually able to see beyond her preconceptions.

"I used to think only very few people with Down syndrome could read and write, even when I was studying Down as a biologist. But while I was writing my doctoral thesis, I noticed at some point: You've seen these people write poems, postcards, short stories a hundred times now. And nonetheless, each time you thought it was an exception," de Braganca told Der Spiegel.

Newsstand looks

Fototermin für das Ohrenkuss Mode Heft
Angela Fritzen, a writer for the magazine, doubled as a model for the fashion issueImage: Katja de Bragança

The main thing that helps Ohrenkuss stand out is its hip, fashionable look -- designed by paid, professional photographers.

De Braganca said she believes the look of the magazine is very important: "We have actually been criticized as being politically incorrect, because we have photographers working for us who aren't handicapped. ... I don't choose photographers based on their number of chromosomes!" she told Der Spiegel.

There are 13 staff writers who put out the magazine and take part in the editorial meetings in Bonn; a further 30 freelancers send in their texts from around Germany. The writers have only just begun to get small sums for their work. Most of them have either day jobs or are in job training programs.

Looking for controversy

The editors at Ohrenkuss seem to court controversy rather than avoid it. For the "Good and Evil" issue, the staff took a trip to the Buchenwald concentration camp. And the next issue will be about Mongolia as people with Down syndrome were commonly referred to as "Mongoloids" for decades.

But then, dealing with criticism and stereotype is the ultimate purpose of the magazine.

As de Braganca told Der Spiegel, "It would be great if Ohrenkuss could be found in more pediatricians' and ob-gyn offices. Then people could see: These aren't horrible monsters. They are women and men."