At CARPA 5, entitled Perilous Experience? – Extending Experience through Artistic Research, which took place from August 31 to September 2, 2017 we presented the project If You Are Not There, Where Are You? in which we sought to gain new insights into the experience of absence seizures through our artistic practice. We teamed up with participants: a group of children and young adolescents with experiences of absence seizures and worked from different modes and strategies of collaboration. The outcomes provided the participants with alternative ways to communicate with the world about their disease: in images, sounds or spatial experiences, rather than by language alone.
Some children, probably one in a hundred between the age of four and twelve, develop a light form of epilepsy called absence seizures. These seizures take on very different forms, from a daydream-like state with open eyes to falling and being completely unconscious several times a day. Some seizures only take a few moments, others longer.
Although medicine, neuroscience in particular, has conducted considerable research on the illness and on what happens in the brain during, before and after seizures, the experience as such is still largely unnamed. Children often lack words to articulate the multimodal  experiences and thus find it difficult to share them with parents, doctors, teachers, friends and family. Some children have experiences that can hardly be verbally shared due to the nature of the experience itself: an absence seizure can be very alienating, sensory and disorienting. Additionally, the seizures are not always immediately recognized as absence seizure epilepsy, for example, teachers might report that a child is just not concentrated. Behaviour is not easy to analyse correctly, and the illness is not always easy to recognize.
Documentary filmmaker Maartje Nevejan experienced these seizures herself when she was a child. She has initiated and directed the project If You are Not There, Where are You? originating from both an artistic as well as personal interest.
Nine artists from different disciplines worked together with a group of eight young people between 8 and 28 years old. Science and art were connected in an experiment that aims to make the invisible experience visible, audible and experienceable. Alone or in duos, the artists worked with the children on artistic utterances (music, paintings, interactive installations, etc.) that align with the experience before, during or after a seizure.
All participating artists began with the same main question: How can we as artists translate or transform the multimodal experience of an absence seizure into an artistic utterance that respectfully addresses and somehow relays the original experience?
The core team of the Professorship Performative Processes  was asked to be involved as researchers as well as artists, which opened up the way to more in-depth questions addressing the creative process and its various actors  in more detail. These questions concern the nature and identity of the ingredients that influence this process and which strategies and methods are fruitful in this transdisciplinary context. We were curious as to how we might involve the various actors, facilitate their involvement and collaboration with each other, including participants, parents, neurologists and the other artists as well as all the materials and technologies employed. How would the different actors work together, and what would be the actual influence of Maartje Nevejan, not only as artist and researcher but also as a client and director of the project?
Other questions were more specifically concerned with our various artistic involvements and related to the media we work with, such as spatial design, creative writing, music and sound, virtual reality environments, animation and painting. We were interested in how process and product in these various disciplines and media relate to each other, particularly concerning the collaboration between artists and participants. This array of questions and our specific, yet collective, identity as both researchers and artists brought us to the methodology used.
Especially in the beginning of the project, we held long conversations regarding research methodology. We were confronted with a number of questions concerning validity, the relation between the artistic work and the neuroscientific field, managing our own identities in the balance between artist and researcher and the direct one-on-one work with the participants.
The methodology is situated within the larger framework of artistic research, to be more exact: ‘research in and through artistic practice’. In essence, what this means is that artistic practice is an essential and leading element in all areas of the research: 
Since the research questions are situated in the arenas of artistic and creative processes and the artist is the central actor in this web of questions, the methods are artistic insofar as artistic practice is the most essential method; the research happens through artistic practice. Finally, the results are artistic; next to outcomes such as articles and conference presentations, artistic works or ‘utterances’ are an essential result of the research itself – created in collaboration with the participants.
The artistic, however, was not the only methodological pillar; we also employed literature review, observation and interviews. Both literature reviews as well as encounters with neurologists provided us with a conceptual foundation concerning absence epilepsy and perception from a phenomenological perspective. Our observations were documented in both written reports as well as in audio and video recordings. Maartje Nevejan and her team documented the overall process of the research in a 40-minute research film. All artist researchers documented their processes extensively on the Research Catalogue, an international database and platform for documentation and dissemination of artistic research.
Another methodological framework that was fundamental for us was Performative Research, a concept that was first developed by theatre scholar and researcher Brad Haseman (2006). Falk Hübner (2016) builds on Haseman’s work in his article ‘On the Way towards Performative Research’ (‘Op weg naar performatief onderzoek’) and combines this with artistic research methodology, action research and the – inherently artistic – context of performativity in order to come to a more elaborated concept of performative research, which includes:
In our CARPA 5 presentation we showed how artistic research in this project has helped us to re-create experience, to realize impact on reality, and to strengthen our conceptions of co-creative work forms. This research project has raised questions on authorship/ownership, co-creation, ethics, risk taking and failure, illustrating the perilousness of engaging with absence seizures.
We decided to jointly present using also different forms of presentation since we wanted to demonstrate the diversity of questions and perspectives that made this project not only multi-modal, but also poly-vocal, and by doing so showing its (or our) radical defiance of singular ownership of creation.
More theoretical introductions on co-creative strategies and ownership; dialogical discussion of two of the projects as cases of collaboration addressing the issue of ‘re-creating experiences’; a group response to statements of impact; and a brief session creating a feedback situation with the CARPA 5 audience: many voices uttered offered a specific perspective on the creative process between artists and participants as well as on the relationship between absence seizures and an artistic, imaginative trans-creation.
Finally, in this contribution to the proceedings of CARPA 5, we include the text of two documents we handed out during the conference. They consist of statements arising from our experiences during the project If You Are Not There, Where Are You? that were collected and written for two separate conferences on artistic research and its methodology, designed to stimulate discussion and inspiration among their readers.
For the conference Artistic Research; Is there some method? that we attended at the Academy of Performing Arts in Prague from April 7 to 9 in 2016 we wrote the Prague Provocations. At that moment, we were at the very beginning of the project.
The Helsinki Hindsights were written for CARPA 5, Perilous Experience? – Extending Experience through Artistic Research which took place in at the University of the Arts Helsinki from August 31 to September 2, 2017. By then we were working on our publication on this project, the book titled If you’re not there where are you – mapping the experience of absence seizures through art, a publication of HKU Professorship Performative Processes in collaboration with International Theatre & Film Books. This book will come out in December 2017 as one of the many outcomes of this transmedial project.
12) Multimodality is an inter-disciplinary approach that understands communication and representation to be about more than language alone, namely that they include various modes, such as listening, reading, smell or touch. It has been developed over the past decade to systematically address often debated questions regarding changes in society, for instance, in relation to new media and technologies. Multimodal approaches have provided concepts, methods and a framework for the collection and analysis of visual, aural, embodied and spatial aspects of interaction and environments as well as the relationships between these.
13) Nirav Christophe, Henny Dörr, Joris Weijdom and Falk Hübner, with Marieke Nooren as coordinator of the project and the professorship.
14) We use ‘actors’ here in the sense of Bruno Latour’s Actor Network Theory (ANT) rather than in the meaning of the actor as a profession. In Latour’s application, an actor can be any human or non-human (object) that contributes in a meaningful way to a given situation or context. Any person or ‘any thing that does modify a state of affairs by making a difference is an actor’ (Latour 2005, 71). Many researchers applying this method use the term actant, that which accomplishes or undergoes an act, to shift the focus on the action rather than the human or thing.
15) Stephen Scrivener (2009, 76) explains that ”[w]hen art and design is both subject and method of inquiry, then the research is both research into and through art and design.”
16) For more information about Research Catalogue, see: www.researchcatalogue.net (accessed November 4, 2017).
Haseman, Brad. 2006. “A Manifesto for Performative Research.” Media International Australia Incorporating Culture and Policy 118 (Practice-led research): 98–106.
Hübner, Falk. 2016. “Op weg naar performatief onderzoek.” Blad (HKU lectoraat Kunst en Professionalisering) Utrecht:.112–125.
Latour, Bruno. 2005. Reassembling the Social. An introduction to Actor-Network-Theory. Oxford: Oxford University Press.
Scrivener, Stephen A.R. 2009. “The Roles of Art and Design Process and Object in Research.” In Reflections and Connections: On the Relationship Between Academic Research and Creative Production, editors N. Nimkulrat & T. O’Riley, 69–80. Helsinki: University of art and Design Helsinki.
Falk Hübner PhD (1979) is a composer, theatre maker, researcher and educator. He creates experimental stage works that fall between concert, installation and performance as conceptualist, composer and director. His present research focuses on artistic research methodologies, artistic research as integrated practice, and the relation between musicians, the arts in general and current music education in relation to the society of the 21st Century. Falk is core teacher for research at HKU University of the Arts Utrecht and head of the research group music and performativity at the HKU Professorship Performative Processes.
Nirav Christophe MA (1959) is playwright for the stage, radio and television. His radio plays have been broadcasted in 12 countries. He holds masters in theatre studies and dutch language and is an expert in creativity processes, especially performative making processes. Nirav Christophe is Professor Performative Processes at HKU University of the Arts Utrecht. As founder and former artistic director of the BA Writing for Performance at HKU, he is an internationally renowned writing lecturer and pedagogue.
Henny Dörr MA (1959) is teacher in dramaturgy for scenographers and responsible for the artistic profile and curriculum of both BA and MA courses in Scenography at HKU Utrecht University of the Arts. As artistic researcher at the HKU her interest lies in parallel processes of learning and creating, designing and making and its effect on workspace and worktime. Recently she worked with Thomas Verstraeten and Mark Luyten on Staging the studio – a deconstruction of classical notions of workspace.
Marieke Nooren (1982) is coordinator of the Professorship Performative Processes at HKU. She is also working as a freelance creative producer and dramaturg in projects with a special interest in the area where arts and science meet. Consequently, she is involved in IYANTWAY for the long term. Marieke is co-initiator and creative producer of WildVreemd, an artist lab creating mixed media experiences. Together with Steye Hallema she created one of the first VR (music) videos that really challenged this new medium, with new ways of editing and storytelling.
Joris Weijdom MA (1974) is an international lecturer and PhD candidate researching interdisciplinary creative processes in collaborative mixed reality environments at the HKU University of the Arts Utrecht. He initiated and led the HKU Media and Performance Laboratory, a practise led research environment, until 2015. He is teacher and coach at several BA and MA programs at HKU Theatre, has a background in 3D computer animation and got his MA in interactive multimedia.