Exploring Brain Injury Through Film, Ethnography, and Research-Creation: The Journey of Becoming the Butterfly

By Olivia-Autumn Rennie

In a world dominated by electronic media, there’s no question that platforms such as film have a powerful place in sharing important messages and making new discoveries. Through stories and characters, audiences can come to understand unique experiences which may differ from their own. If created with care and intention, films can even shape society at the level of policy and institutions.

When it comes to brain injury and trauma, there is much that the world of medicine, science, and indeed, the public at large, still has to learn. In the past hundred years or so, with rapid technological advancements, research has been able to unlock many secrets of the brain and its functioning, opening new pathways of medical care for those experiencing brain injury. That being said, there is still a long way to go in terms of understanding the deeply personal experiences of brain injury, which include many aspects that current technologies, testing, and treatment approaches simply cannot capture. 

As a filmmaker and physician-in-training, I am deeply curious about how arts-based methods and research-creation approaches can be applied in the context of understanding neurological and psychological injuries, diseases, and disorders. In particular, how we can go one step further, and develop novel, collaborative methodologies to apply in the filmmaking process, whereby those with lived experience of conditions - such as brain injury - have the opportunity to become meaningful collaborators on the project’s creative team, driving content creation in such a way that both academics and audiences alike can see and feel the unseen aspects of brain injury, through stories told on screen.

This curiosity was the basis for the short film that would later emerge from an ethnographic, research-creation film project: Becoming the Butterfly. This project was supported in part by the Situated Neurology research project, as well as Connected Minds, the Social Sciences and Humanities Research Council of Canada, and the Faculty of Liberal Arts and Professional Studies at York University. Now preparing to make its debut on screens this coming spring at York, the process of creating this project was full of insights, challenges, and a new way forward in exploring brain injuries.

Fig. 1: A group photo following completion of filming

Lights, Camera… and Some Theoretical Background

Before going behind-the-scenes of Becoming the Butterfly’s development and filmmaking process, it’s important to first consider some of the theoretical background surrounding this film. First and foremost, at the heart of this project is research-creation— an interdisciplinary methodology that merges artistic practice with scholarly research, fostering new ways of producing knowledge (Loveless, 2019). This approach moves beyond traditional research paradigms by emphasizing process, embodiment, and experimentation. It allows for the exploration of non-linguistic and sensory dimensions of knowledge, making it particularly well-suited for topics that resist straightforward verbal articulation, such as brain injury (Manning & Massumi, 2014). Research-creation acknowledges that knowledge is not solely discursive but also affective, experiential, and relational (Chapman & Sawchuk, 2012).

In the context of filmmaking, research-creation provides a dynamic framework for participatory and co-creative methodologies. Filmmakers and participants engage in collaborative storytelling, where the act of creation itself generates insights. This aligns with feminist and Crip methodologies that prioritize embodied knowledge and lived experience over abstracted or clinical representations (Trinh, 1989; Kafer, 2013). By engaging participants in the scriptwriting, visual conceptualization, and even directorial decisions, Becoming the Butterfly not only represents but enacts the transformative potential of research-creation in understanding brain injury. 

Another unique aspect of Becoming the Butterfly is its engagement with the speculative genres of science fiction and horror. These genres provide powerful tools for representing the surreal, transformative, and often unsettling aspects of brain injury. Science fiction allows for the exploration of alienation and adaptation, while horror delves into themes of the abject and grotesque, reflecting societal discomfort with disability and difference (Sobchack, 2004; Garland-Thomson, 1997). While the final film ultimately did not dive as far into the extremes of genre that one would instinctively call it a ‘horror’ film, it did encapsulate surrealist and terrifying scenes, playing with the metaphor of being lost at sea to capture how an individual might feel in the acute phase of a brain injury - imagery that emerged directly from our co-creators, as described below.

Fig. 2: ‘Lost at Sea’ [film still] - showing the protagonist as he regains consciousness following a stroke, and finds himself in a new and unfamiliar world.

The Process

With that background behind us, it’s time to dive into the process that gave rise to Becoming the Butterfly. Script and directorial input was provided by two individuals living with brain injury, with the story ultimately emerging from a series of workshops conducted during the summer of 2024. The writing of this film was split into four workshops, held over the space of two months. In the first session, we explored multimodal elements that represented each individual’s experience, such as visuals, sounds, metaphors, songs, sensations, and so forth. These elements gave rise to overarching themes or motifs to be further refined in our second workshop: developing the plotline. As an example, one co-creator described the experience of his partner holding his hand throughout the time that was spent in hospital, with her presence serving as a literal and metaphorical ‘lifeline.’ Taking this idea, we considered how the hands of family, community, and human connection as a symbol of hope could be represented - whether this literally be depicted through a character’s hand being held in hospital or, as we arrived at - pulling our protagonist to safety.

During workshop two, several different storylines were presented as potential backbones for what would become the first draft of the script. These options were provided to our two participants as a springboard for further discussion, acting as a seed for conversation about story elements like character, setting, and the overall message of the film. Workshop one and two were extremely generative, with ideas and excitement flowing from beginning to end of each session. Two core pieces of imagery/symbols were developed: one, the idea of a ‘life before, life after,’ and using the metaphor of a butterfly’s own transformation from a caterpillar to represent this journey. Second, our co-creators described their initial experience with brain injury like feeling ‘lost at sea,’ and having to navigate the world with new bodies and minds. Key messages about hope despite fear and uncertainty were also a large part of the discussion.

Fig. 3: ‘A New Discovery’ [film still] - A young girl, the daughter of our protagonist, discovers a butterfly, which throughout the film is a metaphor for the new and frightening change that can emerge from brain injury.

Workshops three and four consisted of working through a draft of the script written based on the first two sessions’ material, followed by script revision and conversation about other aspects of the production, including input from our co-creators about cinematography,  production design, character traits, and so forth. It should be noted that all of these collaborative steps were done in such a way that no prior film experience was necessary, film-specific jargon was avoided, and sessions were conducted with an awareness towards accessibility, including aspects like a quiet space for meeting and breaks throughout the workshops. 

When it came time to shoot the film, which took place in August 2024, steps were taken to ensure it again was a collaborative process, including our co-creators on the journey. For example, before a single camera got rolling, a Zoom session was held so that both co-creators could meet the actors and crew, introduce themselves, and share more about the journeys with brain injury that informed the film. Later in the filming process, both co-creators joined in-person on set, where they had the chance to take part in providing direction, suggestions, and once again, to collaborate with the rest of the team responsible for taking the story from script to screen. It was an inspiring process that brought a deeply human quality to the film, and made it all the more impactful to bring the project to life. 

Fig. 4a: Collaboration in action! Our co-creators Zooming in remotely on Day 1 of filming

Fig. 4b: Joining in-person on set later in the process

On this note, an important learning that emerged from the project, on top of new understandings of the brain injury experience, surrounded the notion of accessibility in the filmmaking sphere, not only for the script writing stage, but also on set. As with many other industries, there are still many accessibility barriers that exist in the film world, where sets can be physically and mentally demanding, as well as filled with physical barriers that make navigating the set challenging for those with different mobility needs. Great care was taken to ensure that for our co-creators, and rest of the filmmaking team alike, accessibility was a top priority. From this project, new questions emerged about how we can balance the time and financial constraints of filmmaking with the unique needs of collaborators, with these questions an important consideration for subsequent work. 

Fig. 5: ‘Community’ [film stills] - One of the key themes that emerged from this project was the importance of community during the recovery process (including friends, family, support networks, and healthcare providers). This image represents the family of our protagonist, inspired by one of our co-creator’s close relationship with his wife and daughters.

That’s a Wrap!

They say every film is a miracle, and Becoming the Butterfly is no different. By bringing in collaborative filmmaking practices, ethnographic, and arts-based research techniques, we were able to explore the lived experience of brain injury in a way - I would argue - no medical imaging or laboratory test ever could. By weaving together the experiences of those living with brain injury, the aesthetic possibilities of speculative genres, and the rigor of academic research, it offers a compelling new lens through which to understand the human condition. It’s deeply touching to see how this project evolved from start to finish, and to anticipate the impact it might have in the realm of education, advocacy, and awareness. 

Curious to see this film and catch a roundtable discussion about its process, as well as bigger questions about brain injury, ethnography, and collaborative film? Save the date for the film’s premiere, with registration details coming soon:

Thursday, April 10th, 6:30-8:30pm

Location: York University (room details available shortly)

References

Chapman, O., & Sawchuk, K. (2012). Research-creation: Intervention, analysis and "family resemblances." Canadian Journal of Communication, 37(1), 5-26.

Garland-Thomson, R. (1997). Extraordinary bodies: Figuring physical disability in American culture and literature. Columbia University Press.

Kafer, A. (2013). Feminist, queer, crip. Indiana University Press.

Loveless, N. (2019). How to make art at the end of the world: A manifesto for research-creation. Duke University Press.

Manning, E., & Massumi, B. (2014). Thought in the act: Passages in the ecology of experience. University of Minnesota Press.

Sobchack, V. (2004). Carnal thoughts: Embodiment and moving image culture. University of California Press.

Trinh, T. M. (1989). When the moon waxes red: Representation, gender, and cultural politics. Routledge.