Source: NPO 2Doc.nl
Text: Wieneke van Koppen
Photo: Lin Woldendorp
Date: 3 October 2018
In 2014 ‘The small world of Machteld Cossee’ made by director Hetty Nietsch had its première at the Dutch Film Festival. Six months later it was broadcast on television in 2Doc. Machteld Cossee is an enterprising woman in her early forties who lives with Usher Syndrome. One day, this syndrome will make her world dark and silent. In the film we follow her for six years and we how she copes with this heavy fact. How is she doing now? We visited her in Haarlem, the Netherlands.
Overwhelmed with reactions
The film moved people from Machteld’s wide social circle as well as other viewers Director Hetty called the number of reactions to the documentary ‘overwhelming’. Machteld continues: ‘People around me know that I suffer from Usher, but the film zooms in on this. It shows the rough side of Usher.’ She confesses that she did not pick up the children from school herself the first four days after the broadcast. ‘When I appeared in the schoolyard again, other parents came to me. They offered their help and said they now had a better understanding of what was going on. How often was I called ‘arrogant’ or ‘a muddlehead’? I would never call myself that. The film gave people more insight.’ Hetty adds: ‘People looking at Machteld from a distance don’t have any idea how much difficulties she continuously has to overcome. I saw her on a photo with her husband Lars on the tandem in the JAN and I immediately knew that I wanted to watch at things along with her.’
The film did not only have influence on Machteld’s environment but on that of her fellow sufferers as well. ‘Six months ago, a woman I didn’t know came at my door. She stammered a bit while she was standing there and I really had no idea why she had come. Her son appeared to suffer from Usher. When she saw me walking one time, she mustered up her courage and rang at my door. In the period after that we had coffee together twice to talk about this.’ Actually, Machteld has become a kind of standard bearer. ‘Usher Syndrome Foundation received a lot of reactions after the broadcast and various young people had their “coming-out” as I call this after the film.’
Put things into perspective because of Usher
Hetty Nietsch made the film with her daughter Lisa Bom. ‘She had just finished the academy of arts. Working on a film for a few years really costs a lot of money, so we took a small camera and started to work with the two of us. The cameras became better in the course of the time.’ Lisa sometimes even slept at the home of Machteld and Lars.
The documentary ‘The small world of Machteld Cossee’ with Dutch and English subtitling.
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Machteld Cossee tells her story at the ProQR congress ‘Changing lives’