About this project

If You Are Not There, Where Are You? is trying to find a language for the multisensory experience of absence epilepsy, or: a brief moment of ‘not being there’. And if you are not there, where are you?

Through art and science, If You Are Not There, Where Are You? breaks the silence that surrounds absence epilepsy in children and youngsters. Simultaneously, we aim to contribute to the wider discourse about the relationship between reality and imagination. Children with absence epilepsy are ‘gone’ for a few seconds, sometimes several hundred times a day. If You Are Not There, Where Are You? gives shape to the worlds where the children and youngsters are during those times. Every young person who has experienced absences is linked with his or her own artist. Together, in co creation, they give shape or sound to their personal absence experience. We call this: Mapping the experience. This website documents the art works and the process of creating them. The website is developing continuously and will grow. We hope this will be the beginning of an international image library of absence epilepsy. We are giving shape to a reality, using our imagination.


Inspirational quotes

of the people involved in this project

Perhaps the darkest black is the black we carry within ourselves,It’s not the night where you switch the lights off – it’s the night where you close your eyes. To make new art, you have to make new space.

Anish Kapoor

I can not proof it scientifically, but I am convinced this is the stuff that fairytales and myths are made of.

Dr. Oliver Sacks

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    Contact Informatie

    Binnenkant 30, 1011 BJ Amsterdam m@nevejan.nl