Taking Back Agency

Co-creating a narrative about living with cerebral palsy

Narrated by Jacob Nossell

I HAVE A VOICE. I need proof. I seek answers. I am sitting in a crowded cafe in Copenhagen with Kristian Martiny, at that time a young researcher in philosophy and neuroscience. We are talking about a new documentary film I want to make about disability and normality. I take a sip of coffee while contemplating what to say next. It is complicated to explain the lack of ability and agency I experience every day living with my disability.

It is an experience of being excluded from describing one’s life and not being understood on one’s own terms. Throughout my life I have listened to doctors, researchers and practitioners telling me what my life is like. Although they have the best intentions, they are almost always inaccurate in their interpretations about my disability, leaving me only more frustrated and even more disabled. But I need research to support my experiences. Without that, people will dismiss my thoughts and experiences as perfectly ordinary, no more valuable than the neighbour’s complaints about the weather.

I place my cup of coffee on the table in one quick, determined movement. I spill and make a big brown stain on the table. So much for taking my agency back!

This is why I cannot make the documentary alone. I need to engage this person sitting across me, because there is a need to invent a whole new language for disability based not solely on research theory and knowledge, nor solely on my personal experiences, but a new structural language based on both worlds.

Kristian explains that he is working on a PhD project about cerebral palsy and cognitive science. He talks fast and for a long time, like many researchers do. But somehow he differs from the other researchers I have met. Between his long talks he actually seems interested in trying to understand me — and in a way other way than, “Wow, this is an interesting specimen.” He is actually trying to understand me on my own terms.

So, we decided to embark together, along with key artistic co-creators, on a documentary film and theater project.

From I to We: Becoming Enactlab

In 2019, the terms “co-creation” and “agency” make sense in many ways. In making the documentary movie Natural Disorder (2015) by director Christian Sønderby Jepsen and through the production of the theatre play Humane Liquidation (2016) by director Thomas Corneliussen, Kristian and I have gone from ideas and talks to a practice.

First, it is a fact that living with a disability by definition means that you do not have the same abilities and cannot do the same things that so-called “normal” people can — it is a dis-ability. This also means that people with disabilities in many ways are dependent on others. It was impossible for me to create and produce a documentary film and theatre play single-handedly.

That was the point from the coffee meeting; I wanted to create a platform or amplifier for my own voice. To do that I was dependent on bringing Kristian and his research, as well as a documentarian and theatre director, into the project to an extent where each of us were equal co-creators. Without research and art there would be no documentary and no play. There would only be my own voice and personal story.

Together we were able to create something more. We wanted to create something general that everybody can understand and relate to. We wanted to create a “we-narrative” and “we-experience,” with the ambition of transcending the “in-group/out-group” and “us and them” binary distinction between abled and disabled people. This would be more in line with World Health Organization’s understanding of disability, where (dis)ability is a structural matter of degree of being human. With this aim we wanted to expand the societal mindset for understanding disability and to systematically push the political, educational, and health institutions in their work with disability.

Natural Disorder served as an open medium for collaboration between neuroscientists, psychologists, philosophers, researchers in bioinformatics and geo-genetics, filmmakers, and theater artists. The film catalyzed a “knowledge journey” where we explored ideas through a number of studies — from CT-scanning, DNA-testing and motion-capture — to different social experiments from the perspective of a person with Cerebral Palsy (CP). All of this is captured by the film in order to present a complex real-world picture of what it means to live with CP.

In this way the documentary was not only a personal story about life with CP and disability, because this subjective perspective and narrative was constantly seen in relation to societal perspectives on the matter and to the scientists’ perspective, research, and objective data. This, for example, becomes clear in one scene, where we show how the first-person personal perspective of experiencing and living with disability is very different from the third-person perspective of a neuroscientist interpreting a CT-scan of the brain damage causing the disability. Such narrative and visual combinations of subjective and objective perspectives and information occurs throughout the film, and it creates deep nuances that show the complex meaning of disability.

When Jepsen finished editing the film, Kristian and I presented several scenes at international conferences and workshops in cognitive science and disability studies. In doing so, the data was opened up to multiple interpretations and analyses. In many cases we presented the documentary together in order to get both perspectives on the experiences shown in the film.

In this way we were also able to create a narrative around disability; that disability from this combined perspective can be scientific, artistic, philosophical and citizen-driven at the same time. A narrative which legitimized both empowerment and a space for agency based on co-creation.

(For more details on our experience with co-creation through the documentary, see the article we published on Open Media Science)

Interestingly enough, the team—Kristian, and I as a “we”—managed to create this new narrative where the character Jacob in the documentary film used the empowerment and new space for agency to become and be portrayed neither as a victim nor as a hero, but something in-between. Research on the movie showed us afterwards that the reviewers of the film did not see the character as the typical disabled victim, because he had too much agency and power which made the character human — both annoying and relatable at the same time.

This new narrative offered a nuanced understanding of what it means to live with disability, not only for myself, or for the viewers of the documentary film, but also for healthcare professionals that work with CP and disability. We used the film as a platform to discuss the meaning of living with disability with healthcare professionals around the world. For many of these professionals, these discussions created a shift in mindset and perspective on disability, normality and how to work with people in healthcare.

Another part of what makes co-creation so interesting is that we typically celebrate individual achievement in the realm of research, culture, and art. There is usually only one genius, one artist, and one director who does not share the spotlight with others. We try to break down this convention. We want to share experiences and knowledge, and this was a requirement in order to succeed with our project. Our work was characterized by the intention to create equal agency for everybody involved, and not only for Jacob as a person but as a strong we.

The culmination of this process was the creation of Enactlab, a new sort of collective identity to reflect our shared creation.

Enactlab’s approach is to merge the worlds of art, politics and science, and combine it with the voices of citizens — in this case in regard to disability. Thereby, Enactlab aimed to develop a new language more complex and nuanced in order to manage and comprehend the many opposing views and opinions we experience when discussing disability.

Usually when people talk about disability they tend to consider it in singular and limited ways in the realm of politics. Doing that almost inevitably results in a discussion about managing rights and resources — e.g. the right to health care and other different kinds of support — a discussion often based on logical, rational and evidence-based arguments, without including the people in concern. Too often those with disabilities are not given the chance to express their experiences, emotions, and create their narratives themselves.

Sure, you can argue that logic, evidence, and rationality are necessary starting points when dealing with politics and managing resources. But the strategy comes with a cost.

There is more between the lines when discussing and understanding life itself. That is why we sometimes have to trust our guts and follow our hearts. Life consists of both logical, evidence-based and rational thoughts and our lived experiences, emotions and values. Everyone wants to be loved, have good friends, a partner, a home, meaningful work.

Therefore, Enactlab brought the realm of art into play alongside the scientific and political realms, inspired as well as supported by the agency of the citizens. Here, we as researchers and citizens had an opportunity to understand knowledge on various levels and use such terms as lived experience, meaningfulness, and feelings, without having to justify it logically, rationally and with clear evidence. This is part of our efforts to develop new languages: to introduce metaphors and logics from the sphere of lived experiences into political and scientific discourse.

By triangulating art, science and politics through co-creation and agency Enactlab was able to amplify Jacob’s voice, going from his own subjective experiences to general (inter-subjective) knowledge and understanding. In this triangulation, Jacob as a person was able to express himself fully in order to be understood as a whole person — and not only through his categorization of “being disabled.” He was able to take agency back into his own hands.

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