GER | 2018 | Documentary | 97 min. & 60 min.
Language Sign Language, German
Production Countries GER, FR, SP
Screenplay & Director Susanne Bohlmann Production Christopher Hawkins DoPs Lars Filthaut, Anna Baranowski, Susanne Bohlmann
Co-Producer german broadcaster: ZDF/3Sat (TV release: 17.12.18)
Distributor (international) ACL Creative Studio
"Only now I realized which monster we looked into the eyes.
The monster is not called Sven, but deafblindness ... "
Almuth Kolb (Deaf-Blind Assistent) - 08/17
Logline The deafblind Sven has decided to go with the help of his assistants the 800km long Way of St. James. He wants to prove it to everyone, but Sven quickly comes to his physical and psychological limits. A bitter struggle for power, control and self-determination begins ...
Synopsis Sven has dream. A dream that one time in his life he will walk the Camino de Santiago - but this seems almost impossible. Sven suffers from Usher syndrome, a rare genetic disorder which causes severe hearing loss and visual impairment. He lacks both of his primary remote senses – he is hard of hearing and since 2010 completely blind.
Although Sven can communicate verbally with the use of a special hearing aid, it does not filter or distinguish the sounds and so is only useful when his environment is totally silent.
Sven communicates mainly by making tactile gestures, forming words and letters, with his hands. He is perpetually reliant on the help of his specially trained assistants and must trust them unconditionally. Although he is their “boss”, he cannot assess his situation for himself. They are his eyes and ears. They guide him, describe his surroundings and translate every communication with the outside world for him.
There are only around 50 trained Deafblind assistants in Germany.
When Sven’s assistant, Almuth, heard about his dream to walk the Camino, she offered to accompany him for the 800 kilometres. Sven could hardly believe it. Immediately he began to prepare for what would be the journey of a lifetime.
Together with Almuth, Sven thoroughly planned his journey for two years. Seven assistants will alternate the responsibility of accompanying Sven over the course of six weeks. Some of the women he has worked with – the others he barely knows.
In the middle of April, the journey finally begins, but after only a few days in the strange environment Sven begins to behave aggressively. The mood turns sour. Documenting the frustrating fight between Sven and his companions, filmmaker Susanne Bohlmann accompanies the group for six weeks through Spain. They want to help but are attacked and pushed away by Sven. The demons of his past and his disability come to the surface and turn Sven’s dream into a nightmare for everyone.
Furthermore, Sven's physical condition is deteriorating. His knees can no longer withstand the unfamiliar terrain. Sven must go to the hospital and interrupt his walk for several days. Every day he feels more and more imprisoned and isolated. The Camino disappears under his feet. Now the only thing that matters is how far is left to go and every step is torture. One by one, the assistants change and go home with a feeling of failure and helplessness. Sven's Camino is not at all the heroic journey the director had hoped for, yet it gives an intimate glimpse into the world of a deafblind, reflecting our desire for freedom, independence and self-determination.
Sven´s Story Sven Fiedler was born in Rottweil in 1967 and since his birth has suffered from Usher syndrome, a congenital disorder which made him deaf. He also suffers from irreversible retinal degeneration - in 2010 he became almost completely blind. From that point on he could no longer practice as a professional draftsmen.
Sven:“Many, Many years ago when I was still partially sighted, I watched a programme on TV about the Camino de Santiago (St James’s trail). It was fascinating to me, I had to experience it. But, due to my deafness, I didn’t really understand where the pilgrimage was. The scenery, the weather, the animals I saw and the language they spoke were not European to my mind. I thought they were on the other side of the earth.. in America, Canada maybe even further. It was a dream I had to forget, it was too far!
After that my eyesight got worse, I was blind by the end of 2010. I went to Hanover for rehabilitation which lasted 14 months. The leader of the centre was called Mr Jacobs, that reminded me of my dream* so I told him about it. It was a dream I’d left in the past as it was impossible for me to go to the America. Mr Jacobs told me that it wasn’t that far, it was here in Europe, in Spain. I was speechless.. But it was still just a dream; I am Blind and Deaf... just a silly dream!
At the end of 2014 I was on a weeklong trip to the Black Forrest with other deafblind people. As we walked, I remembered the Pilgrimage in Spain and shared my dream with my assistant Almuth. Straightaway she said to me “I would love to go with you!” It gave me chicken-skin. I didn’t know what to do. Was it really possible? At Christmas, I received my first audio book as a gift. I can hear a little with special equipment, I wouldn’t have bought one for myself as it’s too exhausting,. It was the audio book of Hape Kerkling “I‘m Off Then: Losing and Finding Myself on the Camino De Santiago”. It was incredible; I listened to it 7 times in a row. I was completely done by the end, concentrating on every word, I was there with him. I searched the Internet for the Pilgrimage; I wanted to know everything about the mountain paths and the length of the walk.
Since February 2015 Almuth and I have been planning for the biggest project of my life. 7 of my deafblind assistants will support me, before in training and on the trail. All 7 won’t be there all the time but at different times on the 6 week trek.
One assistant will drive the car, carry the luggage, supplies and sort out the accommodation. Two assistants will walk with me from early morning until late at night. In Mid April we’ll travel by car to St. Jean Pied du Port in France. That’s where it all starts. We plan to be in Santiago de Compostela 42 days later. If this is no longer just a dream but a reality then others must be involved, it must be bigger than me. I want to get more deafblind people to benefit somehow. Perhaps this is a lonely demonstration but I hope it’s interesting to the public, maybe I can draw attention to being deaf and blind, and then my dream will truly be real”
*The Pilgrimage is called “Jakobsweg” (Jacobs’s way) in German.
Sven Fiedler / 2016