Sonic stories,sensory ethnography,and listening with an injured mind

Abstract

Brain injuries transform how one’s world sounds. What follows are two sonic stories. These short audio compositions are designed to transport the listener into the pre- and post-brain injury sensory environment—a textured and embodied landscape that non-injured minded individuals, including most clinicians, have little understanding of. This lack of understanding is a consequence of the sorts of neurological research done in the scientific traditions which tend to leave certain forms of sensory phenomena unstudied and exclude patients’ voices. We draw inspiration from Rachel Kolb’s (2017) first-person account of hearing music for the first time after getting cochlear implants. She writes that music jolted her core in ways she could not explain. Instead of “Can you hear the music?”, she prefers to be asked, “What does music feel like to you?” Stemming from the perspectives of two individuals that live with brain injuries (identified here as Story A and Story B), these sonic stories ask what does a brain injury sound like?

Note to listener/reader

Please listen to the sound stories first (Story A and Story B). Then, conclude by reading the coda below. We recommend that when you listen, you close your eyes and use noise canceling or over-the-ear headphones. Please find the sound stories under Supplemental Material.

Listen

Story A

The first sonic story is about a man, now in his 50s who suffered a traumatic brain injury nearly 20 years ago. A construction worker at the time of his accident, after work, he fell down a flight of stairs, sustaining a traumatic brain injury. He was rushed to the hospital and subsequently spent 2 weeks in a coma in the intensive care unit, requiring a ventilator for breathing support and many months of rehabilitation in recovery. He spoke to us about what it was like to encounter the world of sensations post-injury. He described vividly the sensory challenges of listening to multiple people speaking at once, of being in a brightly lit grocery store, and of being torn from his habitual ways of moving and sensing the world. His soundscape story begins with his morning cup of coffee and ends with a rumination on moving to a quieter place, BC’s Okanagan Valley, where he reconnects with the mountains, lakes, and silence.

Listen

Story B

Our second sonic story starts in East Africa, with the vibrant street sounds of urban life in Nairobi, the public announcements of HIV/AIDS studies of the 1990s, the birds of Lake Victoria, as this patient also sustains a traumatic brain injury while working in Kenya. The sounds of voices of old friends and children singing are punctuated with silent pauses of hours and days she no longer remembers, the ululation of her grieving female neighbors, the “white noise” of the airplane cabin as she is evacuated to South Africa, and the painful sounds of medical equipment in the hospital, like the magnetic resonance imaging (MRI) machines scanning for damage and cellular repair. This sonic story asks you to travel with her, but also attempts to convey what it is she hears and remembers years later.

In both stories, listeners will also hear the echoes, hums, and buzzes that are intensified for these patients, sometimes experienced as piercing and agonizing noises, sounds that exhaust, echoes and overlapping sounds, and the confusion and auditory hallucinations that represent real and imagined sounds from past and present as experienced by those living with the long-term effects of neurological conditions.

Coda

What does it sound like to live with the permanent effects of a brain injury (Kolb, 2017)?In recent years, scholars across various disciplines have urged neuroscientists to take a more critical approach to neuroscientific knowledge-making practices (Borck, 2009; Cohn, 2010; Dumit, 2004; Rose and Abi-Rached, 2013). A critical approach involves centering the objects of neuroscientific knowledge in webs of social, cultural, historical, and political-economic contingency (Fitzgerald, et al., 2014). However, the social study of neuroscience has largely eclipsed patients’ lived, sensorial, embodied experiences—that is, what it is actually like to live with an injured mind. Nor does it account for how different clinical understandings are from the lived experiences of patients. At the outset of our research project, we asked: How can the invisible, evanescent experiences of injured minds best be explored and represented? How can artists, ethnographers, and patients collaborate to document the sensorial intensities of brain injuries?

What you listened to are two sonic stories ¹ . Stemming from the perspectives of two individuals that live with brain injuries (Story A and Story B), these sonic stories are created as research interventions. The sounds presented are designed to transport the listener into the pre- and post-brain injury sensoria—a textured and embodied landscape that non-injured minded individuals, including most clinicians, have little understanding of. This lack of understanding results from the limitations of the particular methods adopted in neurological research, those defined by scientific traditions which tend to leave certain types of sensory phenomena unstudied. These deficits are bolstered by the exclusion of patients’ voices in neuroscientific research as well as in the social study of neuroscience (exceptions include, Granek, et al., 2021; Browner and Preloran, 2010).

Here, tranquil and thunderous sounds are juxtaposed against each other. The noiseless and the noisy co-exist, waxing and waning in various dimensions depending on the place, day, time, weather, and feeling. Each real and imagined sound, sometimes dissonant, sometimes musical, is meant to share with the listener the unique imperceptible sonic landscapes experienced by those with brain injuries. Our research participants have reported to us that the perceptual and sensorial disruptions that occur alongside brain injuries are often missed or dismissed at the time of diagnosis and during rehabilitation. The perspectives of individuals who shared their stories with us problematize the disciplinary divisions between psychiatry and neurology, brain and mind, and mind and body. Such dichotomies are not reflective of the lived experience of patients who experience sonic hallucinations, distorted hearing, or loudness sensitivity alongside emotional trauma and physiological changes in the brain. We imagine that these sorts of sonic interventions could work to reshape how neurologists study and treat brain injuries.

Research creation as sonic intervention

Our sonic intervention puts sound and sensation at the center, thus “re-balancing the ocularcentric bias” (Ferrarini & Scaldaferri, 2020: 22) that dominates research. We fine-tuned our attention to the sonic sensoria of everyday life for our interlocutors. Their stories beckoned an experiential terrain that could not be represented in text or image alone. By collecting sounds and framing recordings, the sonic stories represent acts of listening; the aural encounters between a specific someone and their environment, whether made up of bodies moving dynamically in a grocery store, or the hum of stasis in an airplane cabin. These stories demanded we use more than words.

Natalie Loveless suggests that conventional, text-based research traditions render life in the academy unsustainable (Loveless, 2020). In research creation, theoretical, technical, and creative aspects of research are pursued concurrently; as Kim TallBear (2017) describes it, scholarly form is breached in the name of experimentation. By recrafting taken-for-granted forms of research, research creation provides scholars and their collaborators possibilities for understanding lifeworlds generally ignored or excluded. Instead, research creation focusses on moving concepts like “nature”, “illness”, and “disability” back into their relations. By focusing on relations, research creation decolonizes and displaces scholarly spaces, inviting broader audiences to engage and think about subject matter in feminist, creative, and vigorous ways. Research creation is a site for “generative recrafting” (Loveless, 2019: 3). Inspired by Loveless (2019, 2020) and others working in sensory ethnography (Elliott & Culhane, 2016; Howes, 2019; Harris, 2021; Friedner & Scaldaferri, 2020), this paper emerges from an arts-based research creation project where arts practices are both forms of data collection and research representation. Multimodal ethnographic experiments embody the dialogic, porous, and socially oriented practices that are often at odds with what Loveless (2020) calls the corporate model of university life. The sonic stories showcase what such collaborative, experience-centered research might look like. This form of research is meant to protest against traditional forms of neurological research with “difference and dissent”, not as critique but with the hope of contributing to ways of knowing injury and recovery (Loveless, 2012).

Collaboratively as a team (a doctoral student in STS, a sound artist, and an interdisciplinary feminist researcher), we employed sound technologies to explore and investigate our participants’ sonic experiences. The stories are based on ethnographic interviews, where we asked research participants to describe their sensory experiences of living with neurological conditions. Being attuned to the sensorial means asking participants to elucidate what items feel like, what they hear, how their sense of smell has changed, or in the case of Story A, “What do [the grocery store announcements] overhead sound like?” With the participants, we identified sonic moments that stood out in their lives and identified novel sonic sensations, and then we set out to create storylines based on their narratives. We recorded and collected sounds that reflected these storylines, integrated sound recordings from the audio-recorded interviews, and our sound artist worked with a sound editor to finesse the final audios. We met frequently as a team to craft the storylines and to rework the sound stories, in addition to sharing the draft sound stories with the two participants.

Objective sounds and auditory hallucinations

Brain injuries often result in structural and metabolic changes in the brain and these changes can further result in a range of short-term and long-term symptoms for patients. It varies widely from patient-to-patient but our participants, living with a range of neurological conditions, reported short-term and long-term memory changes, cognitive challenges, confusion, seizures, and a range of sensorial sensitivities. Seizures are as different as brain injuries, from public and often painful grand mal to invisible, barely perceptible micro seizures. One facet that we were particularly interested in was how patients with injured minds hear, see, and feel sound, silence, and voices, imagined and real, including auditory hallucinations that sometimes result from seizures and other brain injuries.

Our research favors a perceptual or embodied understanding of sound which refocuses our attention to the sensorial -- lived, embodied, and felt (Million, 2009). As others have argued, auditory perception is never solely internal or external (Grimshaw and Garner, 2015). That is, individual perception is always environmentally constituted and thus unique to the subject; we hear sounds differently. Grimshaw and Garner (2015: 118) remind us that, “While pressing a seashell to their ears, one listener perceives waves on an ocean while, to another, the shell is clearly emitting a sound like the static of a television set.” Hearing is subjective, embodied, and emplaced. Neuroimaging, the primary diagnostic technology used in clinical assessment, cannot capture the external, embodied dimension of auditory hallucinations or sonic sensitivities. While neuroimaging in practice is clinically useful, it forestalls attention to the existential, affective, and sensorial dimensions of the patient’s experience, including aural hallucinations and other “invisible” sensory phenomena.

An auditory rather than a predominantly visual or textual exploration into brain injuries might produce a different set of cultural and academic habits. What if both visual and auditory approaches were adopted in research about neurological conditions? Crucially, these research translations should be derived from patients’ embodied knowledge and experience-based description. New research modalities may generate new knowledge infrastructures in the social studies of neuroscience, with relevance in and outside clinical contexts.

The patients’ voice

Though patients’ accounts have historically played a central role in the anthropological study of biomedicine (for instance, Kleinman, 1988; Saris, 1995; Pols, 2005), patients’ experiences have largely been eclipsed by those working in the social study of neuroscience, with STS scholars and medical anthropologists instead favoring the laboratory and clinic as sites of research. The absence of first-person accounts from the point of view of people with disabilities themselves contributed to the emergence of both the critical disability and neurodiversity movement (Hartblay, 2020; Friedner and Kusters, 2015). Scholars have highlighted how there is some social culpability for the denial of voice in specialist care—that there is a lack of value placed on the life of individuals with cognitive impairments (Rowe and Nevin, 2014). As Kleinman has argued (2012), the doctor–patient relationship is a fundamentally moral relationship. It is a reflection of our contemporary attitudes about sense perception and cognition, as well as a vehicle for upholding those values. The researcher–patient relationship is no different. Neurological research that is engaged with the experiential, first-person account of life after injury can assist in turning patients from “objects-that-are-known by medicine” to “subjects-who-know” (Pols, 2005: 204). Whether explored by medical anthropologists, artists, or neurological researchers, accounts of lived experience deepen our knowledge about brain injuries.

Cultivating the sensory

This paper is part of a larger collaborative project that uses arts-based, sensory ethnographic methodologies to expand our understandings of the lived experience of neurological conditions. Our sonic intervention offers new ways of thinking through how to expand current research practices of sensory observation within both the neurosciences and humanities/social sciences. In neuroscience, the invisible sonic worlds are not missed intentionally, but unobserved as a result of the limitation of the technologies ² . Magnetic resonance imaging and computed tomography scans are limited by inherent epistemological constraints, unable to uncover what people hear or do not hear, for instance. Studying the sensorial in this case requires knowing, and listening, differently. This, we have argued, can be achieved through pedagogical innovation, the formation of transdisciplinary collaborative teams, and the adoption of sensory ethnography research methods.

Sound stories like those shared here might be adopted as a form of immersive pedagogy, one that gives medical practitioners the opportunity to gain a first-person perspective of what it is like to live with an injured mind. What if medical students were required to listen to such sonic stories as a way to understand the invisible, embodied sensitivities reported by patients? Might sound stories offer a form of multidimensional learning to neurologists, for instance, that is typically excluded in medical education? We imagine ethnographic sensory projects being used in medical training and shared with family members of those living with the permanent effects of brain trauma. For instance, in addition to prosaic pamphlets that list resources and recent brain injury statistics, family members would be invited to listen to these immersive sonic stories, told and imagined by patients, interdisciplinary scholars, and artists.

What measures of care and support can be provided to neurology patients and family members if little about their encounter with the world is understood? Our experimental and sensorial ethnographic methods are meant to get at the haptic, sonic, and felt experiences of patients, in other words—to share their inner worlds. Learning to pay attention to bodies and minds in new ways, whether by shifting our attention to sounds, noises, silences, or voices, requires cultivating the art and skill of attunement (Harris and Flynn, 2017). We have tried to show here the value in sound and voices as a means to cultivate sensory engagement. Furthermore, we suggest transdisciplinary and collaborative research projects like ours have the potential to expand our understandings of the sensorial dimensions of injured minds. As a result, new sensory modalities might become more common. Sound and art-based collaboration can reveal our shared connection to sensory phenomena, transforming the unknown into shared meaningful knowledge and, importantly, they help us understand the ways in which neurological conditions are profoundly sensed experiences.