The World at Arm's Length

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Sven has a dream. Once in his life he wants to walk the Camino de Santiago - the Way of St. James. But that seems impossible, Sven has Usher syndrome, a disease which slowly, inexorably robs him of hearing and vision. Profoundly deaf and completely blind since 2010, he can only communicate using a special hearing aid in the spoken language. A hearing aid does not distinguish the sounds - they flow, unfiltered to him - only helpful if Sven's environment is calm and silent and even then it brings exhaustion and headaches. He mainly speaks via tactile gestures, forming words and letters using his hands. He is totally dependent upon the help of his specially trained assistants. Sven has to entrust himself to his assistants, because although he is their "boss", he can't fully perceive his surroundings. They are his eyes and his ears. They guide him, describe his surroundings and translate every communication with the outside world for him. There are less than 50 trained Deafblind Assistants in Germany. As assistant, Almuth learns of Sven's dream to wander the Camino de Santiago, she offers to accompany him on the 800 kilometres. Sven can hardly believe it. Immediately he prepares for the journey of his life. He plans his trip together with Almuth over two years. Seven assistants will alternate his care. He has worked with 3 of this all female crew before - he barely knows the rest. In the middle of April, after much preparation, the journey begins. Just a few days in this alien environment Sven begins to behave aggressively. The mood shifts dramatically from romantic optimism to a dark, furious disappointment. Filmmaker Susanne Bohlmann accompanies the group along the entire six weeks through Spain, recording the frustrating struggle between Sven and his companions. All want to help, but are attacked, pushed down and away. The demons of his past and disability break out of him and make the journey a nightmare for everyone. Sven's physical condition is also deteriorating. His knees can no longer withstand the unfamiliar terrain. Sven has to go to the hospital and delays the walk for several days. He feels more and more imprisoned and isolated. The Way of St. James disappears under his feet. He only counts the miles and every step is an ordeal. Gradually, the assistants rotate and return home with the feeling of failure, disappointment and anger. 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 deaf-blind man, his desire for freedom, independence and self-determination.