Enschede, NL
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Femke Nijboer & Paul Trossèl

Unlocking people with locked-in syndrome

Ir. Paul Trossèl is entrepreneur, father and author. Although he is completely paralyzed due to a severe brain stem stroke, he has joy de vivre like no other. Trossèl lives with locked-in syndrome since 12 years. His mind is completely intact, but he can only move his eyes. He used to direct a thousand employees at a large company, but now he is depends on 15 caregivers for everything. Yet, he has managed to take control of his life again, has started a company, written a book, and he gives theater lectures as a speaker without a voice. And above all, he knows how to have fun.

Dr. Femke Nijboer is scientist who has won several awards. She has investigated locked-in syndrome and quality of life for over 15 years and tested brain-computer interfaces with patients at their own home. Over and over again she has seen that happiness does depend on a perfect and able body or perfect technology. Happiness rather seems to depend on acceptance, agility and social inclusion. Nijboer does not behave like a typical scientist and the academic system appreciates her for it. By coloring outside the lines, she learns more. 

Trossèl and Nijboer met, because he was a research participant on her study. A friendship developed and they share the same strong humor and the ability to mock themselves. They both feel the need to tell the world that society should focus on ability rather than disability. She necessarily tells the story, but he sets the tone with his charisma and assistive technology.