The world through a straw that is getting narrower all the time

Hetty Nietsch and her daughter Lisa Bom

Hetty Nietsch followed Machteld Cossee, who is slowly becoming both deaf and blind because of a disease, for six years. If I filmed her just in a normal way, people could see nothing unusual about her.’

Nietsch; ‘Even the people in the immediate surroundings of Machteld hardly realise what is really going on.’

The world of Machteld Cossee (38) is gradually getting smaller and darker. Ever since her 17th birthday she knows that she suffers from Usher Syndrome, as a result of which she slowly becomes both blind and deaf.
Hetty Nietsch (56), television journalist and documentary maker for the VARA, found Machteld in Jan magazine. ‘She was standing cheerfully on the photo with her husband on a tandem and a child on the back. This apparent happiness sharply contrasted with the accompanying article that told her sad story.’

The documentary maker was fascinated, contacted Machteld and followed her for six years. Nietsch’s daughter Lisa Bom took care of the main part of the camera work. Nietsch has made much talked-of documentaries: about the first cases of aids in the Netherlands and the role the KLM played in this and about transgender Valentijn de Hingh, whom she followed for nine years.

Nietsch’s new documentary The small world of Machteld Cossee shows how Machteld and her family try to lead an as normal life as possible. Machteld can see only little (she looks through a ‘straw’), is hard of hearing and increasingly deteriorates. Yet, she has a husband and two children and she does part-time volunteer work.

The film shows that Machteld hardly talks about her disorder, she does rather not think about it. Why did she say yes to a documentary?
‘She wanted to show her situation to the outside world. People see nothing unusual with Machteld: she talks normally and she has a bright look.
Even the people in the immediate surroundings hardly realise what is really going on with her. Her disorder is progressive: it gets worse all the time. It is almost impossible to make yourself aware every day that tomorrow you might see and hear less.’

How do you get this across as a documentary maker?
‘From the beginning, I tried to find ways in which the viewer can put him/herself in her place, for this is essential. Therefore the images in the film are sometimes shown as if looking through a small tube, so the viewer can see how limited her eyesight is. Sometimes a distorted sound is heard, so people can experience themselves how bad her hearing is. If I filmed her just in a normal way, people could see nothing unusual about her.’

Can you remain objective when you follow your central figure for such a long time?
‘In order to be objective, the sharp edges are needed. l did not want to make a sugary film. On the contrary, I wanted to show Machteld becoming angry and bursting out to her husband and children when they are making a lot of noise. To her this is a cacophony that makes her crazy, especially when she does not know where the sound is coming from. Machteld’s problem can partly not be solved, for she will not recover, but it is good to look at Machteld and to realise what her life is like.’

Auteur: Esther de Roos

‘The small world of Machteld Cossee’