If You Are Not There, Where Are You?

Maartje Nevejan

If You Are Not There, Where Are You? 
VR Experience 'in my absence' | Website areyouthere.nl | live events | publication artistic research | web app
and a Documentary Film (90')

If You Are Not There, Where Are You? (IYANTWAY in short) is a transmedia project about the often misunderstood and frightening experience that children have during an epileptic seizure. Through the imagination of children stories about their multi-sensory experience, the maker creates a language for the experience she had as a child. Children gain control over their imagination. If you are not there, where are you? not only contributes to break the taboo surrounding epilepsy and absences, but will also contribute to the much larger discourse about how imagination relates to reality.

Most people know the tonic-clonic seizure, where you fall and shake. The seizures most common with children and adolescents are called absences, formerly known as ‘falling disease’. These absences have a severe influence on these young lives. Patients are absent for short moments, sometimes a hundred times a day, thus missing bits of information thoughout the day. Nevejan had absences as a child too, and she knows how anxious, disorienting and shameful absences can feel. All dimensions are changing, from very large to very small, time disappears, dimensions turn inside out, the feeling of ‘ME’ exists no longer, there are vague feelings of being watched. It is a combination of disgust and attraction.

According to neurologist Oliver Sacks we all come into contact with the visual language of absence hallucinations, because these are the basis of fairy tales, myths and art. The most famous example is probably Alice in Wonderland, in which author Lewis Carroll articulates how the world can be extremely alienating during an absence.

This project is mapping the absence experiences of children and youngsters, through art and media. Artists work individually with a child to visualize or compose their inner experience. Institute for artistic research 'Lectoraat Performatieve Maakprocessen (HKU)' is developing a method for the mapping of experience.

In the end, the project speaks to us all: about altered states of consciousness, perception and how our minds work. A sort of Doors of Perception, for children. How do we see what we see? What does it mean, what does it say about us? How can we handle the fear? What is reality? 

We have started a collaboration with Charity Young Epilepsy in London and I am currently looking for international partners to co-fund the mapping of the experience of ten new children in London, this process will be followed by a scientific researcher and de Waag society, and Studio Moniker will develop a web-app which brings all the elements together at the release of the film in spring 2019.

Supported by Lectoraat Performatieve Maakprocessen (HKU), The Art of Impact, Prins Bernhard Cultuurfonds, Het Epilepsiefonds, The Royal Institute of Art and Sciences (KNAW) and the Fund Transmedia non-fiction which is an initiative by Creative Industries Fund, Dutch Film Fund and Dutch Cultural Media Fund.  

Maartje Nevejan is an award winning independent filmmaker with a background in theatre and multi media. Her work researches and expresses the raw poetic quality of reality. Nevejan is a change maker, manifesting innovative approaches to fulfilling her visions. Highly interested in revealing what moves people, lifting the veils of conventional thought, Nevejan’s films and projects are daring, funny, heartrending, often changing the people who are in it and who work with her creative vision.

Her films are broadcasted nationally with BNN, HUMAN, KRO, internationally with Al Jazeera, Italy and Scandinavia. Awards: Golden Calf, Nomination Emmy Award and Rose D'Or, Silver Zebra.

English CV on linkedIn and www.nevejan.nl 


I am not here

The Netherlands Film Fund, production Incentive, CoBO and NPO support the production of Nevejans first feature length documentary I am not here. In co-production with VPRO and Zeppers Film.  


Reality is fragile. Put on a Virtual Reality headset and you’ll understand immediately how easily your brain can become confused. What is real and what isn’t? For children with absences, this is a reality they needn’t wear a VR headset for. In this unique VR-work that was designed as a body experience by Monobanda Play, three persons with absence epilepsy will guide you through their inner world.

The VR experience

IN MY ABSENCE is a room scaled experience made for HTC vive and it's work in progress was presented during the Worlding the Brain festival November 3rd at the Stedelijk Museum Amsterdam.