This is a personal reflection by Marie. Please note that it discusses the COVID-19 pandemic and a distressing experience of tinnitus.

In mid-March, as the University I work at closed and the UK prepared to go into ‘lockdown’, I began to hear a loud, throbbing bass frequency. After asking my partner several times “can you hear that?’”, it became apparent that the sound was only audible to me. I lay in bed listening to it, then trying not to listen to it. I would play music at it in the hope of driving it away through sound. I hated sitting in silence. But even with sonic distractions, I would sometimes drift into myself, focusing on the bass.

I was scared. This new sound that only I could hear was the latest of a series of strange, uncontrollable things happening to my body. In the beginning of March I developed a cough and was short of breath. I have asthma but it’s mild and ordinarily easy to manage. This wasn’t ordinary, so I went to my GP to visit the asthma nurse. The nurse and I both acknowledged that since I’d not been to China or the Lombardy region of Italy, and since I’d not had a fever and my chest was clear, it was probably ‘nothing’: which is to say, not ‘the virus’. I even preceded the description of my symptoms with ‘I know it’s not coronavirus’: I wanted to assure her I wasn’t wasting valuable NHS time. The official diagnosis was asthma triggered by a mild respiratory infection. I was told to go back if the symptoms hadn’t cleared by the following week. They hadn’t but I didn’t return. Frightened of being considered a hypochondriac, I put it down to the fear and stress of the emerging health crisis. I simply couldn’t be ill, so I must be making myself ill, in line with what I read in the news.

I have tinnitus intermittently: it’s as one might expect—high pitched, sine tone, often exacerbated by going to loud gigs and parties. I find it relatively easy to ignore. It fades in and out of my life, causing little disturbance. The bass frequency was completely different. I joked in public about the ironies of developing what was (for me, at least) a novel form of tinnitus while working on a project about tinnitus. Our project is partly about ‘knowing’ tinnitus: the ways that listeners understand their own tinnitus and what it can ‘tell’ them. Yet, in private, I was becoming increasingly anxious precisely because I had no idea what this new sound meant. Had I given myself tinnitus by reading too much about tinnitus, just as I had given myself a cough and shortness of breath by reading too much about the pandemic?

The explanation I settled on was that this was yet another symptom of stress. A friend reassured me they had experienced something similar. But even with my working explanation, there were still anxiety-inducing not-knowns. Was this now permanent? Would I be able to develop coping strategies? Providing background noise wasn’t doing much while listening to bassy music (which I had initially thought might help) made me all the more distracted: unsure of what I was ‘hearing’, I obsessively monitored the sound in my own head to check whether it was there or not. I was all-too-aware that I was stuck in a feedback loop with the sound: I couldn’t stop listening to it.

Writing this a few months later, after the cough, shortness of breath, tinnitus (and heart palpitations, fatigue, loss of appetite) have subsided, I’m struck by the profound distrust I had in my own body. And I am struck by the dismissiveness I exhibited towards my own psychological distress (I said so many times, to myself and to others, ‘it’s ‘just’ stress’). It may have ‘just’ been stress but the more difficult truth is that I still don’t really know. There are many people who are experiencing tinnitus for the first time or whose tinnitus has been exacerbated during this current extraordinary situation – the British Tinnitus Association now has a section on tinnitus and COVID-19 on their website. Yet there are also multiple accounts by those who have had COVID-19 that list tinnitus as one of the many frightening and unusual symptoms experienced. Like many others, I’m left wondering “was that ‘it’?”

This encounter has also highlighted for me the complexities of researching something you are experiencing yourself. I was essentially frustrated that I couldn’t think this new tinnitus away. While we have sought to question the reduction of tinnitus to the individual listener by highlighting the role of different environmental factors in exacerbating or mitigating it, I struggled to put this knowledge into practice: I couldn’t figure out how to use my sonic environment to muffle the bass sound, nor how to sufficiently distract myself from it. I knew that it was possible to forge different affective relationships with tinnitus but I couldn’t get beyond anxiety and distress. I was reluctant to refer to myself as ‘a tinnitus sufferer’ (I was certainly suffering but to refer to myself in that way seemed to suggest a permanency that I wasn’t willing to entertain) and so was unwilling to pursue the avenues of support that I know to be available. Part of what I encountered, then, was a disjuncture between what I knew through research and what I knew through lived experience. At a time where I was trying to interrogate how tinnitus may serve to generate knowledge – about listening, about sonic environments, about affects, moods and emotions – my own tinnitus amplified what I don’t know.

Disability studies is an important field of academic and activist work that has had a profound effect on how impairment, illness, debilitation and bodily difference are defined, conceptualised and understood. Since its emergence as a coherent discourse in the 1950s, disability studies has sought to challenge, critique and reconfigure medical approaches to disability and its depiction in media and popular culture. Consequently, disability studies has much to lend to this project addressing how tinnitus has been depicted in the arts, and how the arts may serve to reconfigure both popular and clinical understandings of the tinnitus. In this post, I want to highlight some of the ways that disability studies might be used to think about tinnitus, as well as some of the points of convergence and tension between tinnitus and disability studies.

It might seem strange or even inappropriate to think of tinnitus in terms of disability. Tinnitus can be temporary, even momentary, and unobtrusive, having little impact on day to day life. Unlike other forms of disability, those with tinnitus are unlikely to become ‘spectacles of otherness’ in an ‘economy of visual difference’ (Thomson-Garland, 1997: 8). Tinnitus tends not to be associated with political marginalisation or social oppression; those who experience it are rarely considered a disadvantaged constituency or minority group (Roulstone et al, 2013). Yet tinnitus names a spectrum of auditory experiences. While it may be an infrequent niggle or minor inconvenience, tinnitus can be a debilitating and life-changing condition that impacts upon, disrupts and prohibits participation in social life. Indeed, a failure to acknowledge its debilitating effects have often been a source of frustration: as Mack Hagood argues: ‘like its phantom sound, tinnitus’s phantom social status vis-à-vis disability can be maddening to its sufferers’ (Hagood, 2017: 315). Furthermore, as with other illnesses, conditions and symptoms, the extent to which tinnitus is debilitating may vary not only between different listeners but also for the same listener at different points in their life. As Rosemarie Thomson-Garland notes, bodily impairments that make someone ‘disabled’ are rarely static or absolute; ‘they are dynamic, contingent conditions affected by many external factors and usually fluctuating over time.’ (1997, 13-14). Tinnitus and its effects may be amplified or abated by different living and working conditions, access to support networks, or in relation to other bodily conditions and impairments. Indeed, tinnitus is closely associated with various conditions that are more instinctively understood in terms of disability, including deafness, depression and head injury.

One of the central tenets of disability studies is that disability is not simply an individual or medical ‘problem’: it is also a social ‘problem’. (Roulstone et al, 2013). The social model of disability, which is associated with sociologist Mike Oliver and the British disability movement, figures disability as an externally imposed restriction: certain groups of people are disabled by social norms and attitudes, economic forces and environmental barriers. (Oliver, 2013; Shakespeare, 2010) Likewise, other social accounts have sought to emphasise that disability concerns the relation between a body, its impairment and society. Yet some critics suggest that social explanations of disability do not sufficiently address individual and subjective dimensions of disability; those embodied experiences that are irreducible to social constructions (Ellcessor et al, 2017). Susan Wendell, for example, questions the extent to which physical and/or mental suffering are inherent to bodily differences, ‘that is, how much suffering that could not be eliminated by any social arrangements, no matter how supportive they might be to the lives of people with disabilities?’ (Wendell, 1996)

As a highly individualised and frequently subjective condition, tinnitus could seem resistant to social understandings of disability: its affective qualities would appear to have little to do with the ‘social arrangements’ Wendell refers to. Yet tinnitus is not simply a ‘fact’ of the body and its mind. The conditions through which a listener develops tinnitus—through exposure to high volume sounds in the workplace or war, for example—can point to wider questions about the geopolitics of risk, debility and disposability. (Puar, 2017) Likewise, tinnitus may disrupt or be mediated by social (and socio-economic) ideals of productivity, self-discipline and auditory self control; or it may be antagonised by the auditory norms of shared social spaces: the loud music in bars or even silence in libraries, for example. Thus, while it is no means reducible to them, tinnitus is imbricated with social relations. Drawing on social understandings of disability, we might ask for whom and in what contexts does tinnitus as an auditory impairment become disabling; and how this might relate to particular social norms, values and ideals.

Disability studies’ critique of what Rosemarie Garland-Thomson describes as ‘the normate’– a idealised subject position that is ‘unmarked’ by disability, as well as race and gender; and which underpins liberal democratic notions of personhood – is also pertinent for a reassessment of tinnitus. It is in relation to the normate that disability becomes perceptible (and functions) as such. Again, this is not to deny the lived experience of impairment nor its affective qualities. Rather, the normate is what informs and is reproduced by the social relations that make particular impairments ‘disabling’. It is around the normate that workplaces, the media, medical institutions and educational institutions are organised; and to which ‘overcoming’ narratives about disability are often attached. Critical accounts of disability and its social origins tend to focus on the visible relationship of the normate and the disabled, made apparent by their representation in images, film and television. Tinnitus, and its debilitating effects, however, serve to highlight how the normate is also an auditory construct. The normate is ‘auraltypical’ or ‘otologically normal’: it underpins and is reproduced by, amongst other things, acoustic regulations and hearing technologies. It is the auditory norm against which tinnitus, alongside other hearing conditions and impairments, is judged as deviation.

To adopt a straightforward binary of normate/disabled, however, risks concealing its historical specificity: the complex relations between different types and modes of injury and impairment; and disability’s co-constitution with race, gender, class and sexuality. Indeed, discussions of disability—including hearing impairment—have often been Eurocentric, focusing on the global North. (Grech and Soldatic, 2016; Steingo, 2019) Similarly, research into tinnitus has often centred on Western Europe and the United States of America. Furthermore, as has already been noted, tinnitus refers to a spectrum of auditory experiences; and these have various causes and origins. In light of this, we might ask what is the relationship between the tinnitus that is ‘gained’ with aging and the tinnitus ‘gained’ through a violent encounter? To what extent are apparent truisms about tinnitus and its effects a product of a particular geopolitical standpoint? Despite its tendency towards Eurocentrism, disability studies can provide useful frameworks for addressing these questions, insofar as it has sought to address the co-constitutions of embodiment and the social; and the relationship between situated, lived experience and wider cultural, historical, economic and political formations.

Tinnitus and disability studies, then, have a potentially productive relationship. Disability studies can help to address tinnitus’s imbrication with social relations: while tinnitus is often understood as a highly subjective and individualised auditory experience, social understandings of disability can help to highlight the ways in which tinnitus and its effects are also products of history, culture and economy. In other words, disability studies can help to situate tinnitus within a wider social context. Tinnitus, likewise, can help draw attention to the auditory dimensions of the normate and the prioritisation of the ‘unmarked’ ear. Where disability studies has often focused on visual representations of disability, a critical consideration of tinnitus can help encourage further reflection on how invisible (and, in the case of tinnitus, inaudible) forms of impairment and injury are depicted.

References 

Ellcessor, Elizabeth, Hagood, Mack, and Kirkpatrick, Bill. (2017) ‘Introduction: toward a disability media studies’. In Elizabeth Ellcessor and Bill Kirkpatrick, ed. Disability Media Studies. New York: New York University Press.

Garland-Thomson, Rosemarie (1997). Extraordinary Bodies: Figuring Physical Disability in American Culture and Literature. New York: Columbia University Press.  

Grech, Shaun and Soldatic, Karen (2016) Disability in the Global South: The Critical Handbook. New York: Springer.

Hagood, Mack (2017). ‘Disability and biomediation: tinnitus as phantom disability’. In Elizabeth Ellcessor and Bill Kirkpatrick, ed. Disability Media Studies. New York: New York University Press.

Oliver, Mike (2013). ‘The social model of disability: 30 years on’. Disability and Society. Vol. 28/7, pp. 1024-1026.

Puar, Jasbir K. (2017). The Right to Main: Debility, Capacity and Disability. Durham: Duke University Press.

Roulstone, Alan, Thomas, Carol and Watson, Nick (2013). ‘The changing terrain of disability studies’ in The Routledge Handbook of Disability Studies. New York: Routledge.

Shakespeare, Tom (2010). ‘The social model of disability’. Available at: http://thedigitalcommons.org/docs/shakespeare_social-model-of-disability.pdf

Steingo, Gavin (2019). ‘Another resonance: Africa and the study of sound.’ In Gavin Steingo and Jim Sykes, ed. Remapping Sound Studies. Durham: Duke University Press.

Wendell, Susan (1996). The Rejected Body: Feminist Philosophical Reflections on Disability. New York: Routledge.

In the first few minutes of Pedro Almodóvar’s Pain and Glory (Dolor y Gloria, 2019), the film’s protagonist Salvador Mallo (Antonio Banderas) lists for the audience the various diseases, ailments and diagnoses that he has come to find himself blighted with. A film about reconnecting with the past, Pain and Glory tells, via various recollections, the life story of a sixty-something auteur in bodily and artistic decline. Where in his younger years he was a precocious child and acclaimed filmmaker, Mallo’s poor health now prohibits from him from engaging in creative work and the wider social world outside his flat: he repeatedly asserts that he is neither mentally nor physically in a position to do so. The filmmaker’s routine headaches, meanwhile, result in self-medicating through heroin: a habit that he breaks after an emotional re-union with a former lover.

Among Mallo’s various prohibitive ailments is tinnitus. Indeed, the condition is one of numerous narrative components that serve to connect the film’s protagonist to Almodóvar, leading audiences to question the extent to which Mallo is an autobiographical figuration. Various internet sources speak of Almodóvar’s tinnitus diagnosis from 2007, which he describes as ‘diabolical, loud noise existing only for me.’ Tinnitus is, for Almodóvar, ‘a nightmare. The volume shoots up and you can’t do anything about it. Also, it provokes distortions, I hear Peggy Lee out of tune.’

When Mallo informs the audience that he is suffering from tinnitus—alongside insomnia, migraines panic attacks, joint pain, back pain and bone calcifications—the statement is accompanied by a prolonged high-pitched sine tone. There are echoes of this tone heard in the film’s musical score. A recurring motif opens with a similar but quieter high-pitched tone: it is the first sound that is heard in the film. In aurally representing the condition in this way, Pain and Glory coheres with other cinematic depictions of the condition. Mack Hagood has traced the evolution of the ‘tinnitus effect’ in film sound, a trope that has proliferated in narrative film since the early 2000s. The tinnitus effect names a high-pitched ‘ringing’ tone that acts as a signifier of acoustic trauma, often sounding after an explosion or acts of violence. This high-pitched tone is often accompanied with the ‘muffling’ of diegetic sound, emulating hearing loss. In Almodóvar’s film, however, it is not a bomb or gunshot that tinnitus is associated with, but the depletion of an aging body and the pain of familial bereavement: Mallo’s present state of malaise is partly attributed to the death of his mother, four years prior.

The sine tone acts as a proxy for Mallo’s tinnitus, enabling audiences to ‘hear’ it. Of course, this sounding is contradictory: with the (rare) exception of objective tinnitus, tinnitus is not audible to others. Yet, at the same time, film as a medium has often made audible purportedly ‘interior’ sounds: from the voiceover that details a character’s intimate thoughts to the thudding heartbeat that communicates fear or desire. This aural proxy for tinnitus is accompanied by a visual one. The high-pitched sine tone is coupled with an illustration of the inner ear, reminiscent of a medical diagram, which appears behind a moving waveform. Both the waveform and the illustration present sound and the ear as general, objective and standard.

The ‘standard’ ear, like the ‘standard’ body, has typically been predicated on white, Western masculinity, insofar as it is ‘unmarked’ by identity and social context. Disability and impairment, meanwhile, are often ‘feminized’ through their proximity to care, the home and dependency. Yet tinnitus has been presented as a particularly and explicitly masculine affliction. Hagood’s tinnitus effect, for example, tends to soundtrack men during scenes of combat or violence. In Pain and Glory, tinnitus is attached to an alternative form of masculinity: that of the bourgeois, creative ‘genius’, whose intellectual labour is at particular risk of disturbance by this noisy condition. Caring for his current physical, intellectual and administrative needs is outsourced to various ‘mothering’ figures: namely, his personal assistant, Mercedes and his housekeeper, Maya. The two women worry between themselves about Mallo’s wellbeing; providing him with food, reminding him to get dressed, accompanying him to medical appointments and organising his mail. While there are moments of tenderness, their labour passes largely unacknowledged by Mallo.

In the end, the crisis is resolved. Emotional and physical debility are overcome. An operation removes a calcified lump in Mallo’s throat, which has been causing him to have distressing coughing fits. The film concludes with the filmmaker back at work, shooting a scene depicting a young version of himself and his mother. His creativity is no longer held back by his bodily afflictions. His solipsism wanes. Tinnitus, we can assume, is something that can be lived with and worked around. This resolution might be interpreted as reproducing a narrative of ‘overcoming’, so common to depictions of debility and disability. Yet such a reading is complicated by Pain and Glory’s relation to time and memory. Throughout the film, Mallo returns to scenes of his past, while his past (former lovers, a picture of him as a child, previous feuds) revisits him in the present. The cinematic work-in-progress that is being shot by Mallo at the end, likewise, concerns working with and through the past, rather than simply leaving it behind.

The appearance of tinnitus in Pain and Glory is brief: it is by no means a central component of the film’s narrative. Nonetheless, its association of tinnitus with the (masculine) ear and the sine tone is illustrative of popular understandings about the condition. This depiction and tropes that ground it are not without their complexities. Tinnitus becomes a type of sound rather than a subjective sensation, the experience of which might be heightened or diminished in different situations and auditory environments. As such, tinnitus extends beyond the ear and the sine wave. Almodóvar’s description of his own tinnitus suggests this: for him, tinnitus results in distortions and detunings – specifically of the voice of Peggy Lee. The making ‘audible’ of tinnitus thus risks silencing other aspects of the condition.

Experiences of tinnitus can tell us something about sound, listening and the relationship between them. Tinnitus may change the way in which we think about different sounds and sonic environments, complicating the association of ‘peace’ with ‘quiet’ and ‘noise’ with ‘disruption’. Likewise, people who experience tinnitus often ‘know’ their own listening – they might have developed an aware of what environments, experiences and situations can alleviate or aggravate their tinnitus. Alternatively, tinnitus might be a way of ‘knowing’: it might be able to tell us something about, for example, our stress or tiredness levels; or the places we have been. As a result, ‘auditory knowledge’ is central to this project.

Auditory knowledge refers to both knowing about and through listening. Put differently, auditory experience is both the object of knowledge and a means of generating knowledge: it is something to be understood and something that can create new understandings – of, for example, social life, the environment, history and art.

The idea that auditory experience can generate knowledge is a core principle of acoustic ecology: an interdisciplinary field that examines the social, cultural and ecological dimensions of different sonic environments. Acoustic ecology is associated with the work of R. Murray Schafer, the World Soundscape Project and Schafer’s 1977 book The Tuning of the World. A Canadian composer, music educator and environmentalist, Schafer has produced listening exercises through which sonic environments can be understood, analysed and imagined otherwise. However, Schafer’s work – and indeed much acoustic ecology – tends to assume an ‘ideal listener’ with ‘perfect’ hearing. Terminology such as ‘ear cleaning’ and fears of a ‘universal deafness’ , meanwhile, suggest an underlying audism.

This project treats tinnitus as something to be understood; and something that can generate alternative understandings of auditory experience. Indeed, paying critical attention to tinnitus requires us to take seriously what John Levack Drever has called ‘auraldiversity‘. An auraldiverse approach recognises that there are important differences between different listeners; but also, that the same person may have different capacities and capabilities of listening at different times in their lives. Tinnitus, meanwhile, can be understood as one manifestation of ‘auraldiversity’. A person with tinnitus hears differently to a person without; but also, different listeners with tinnitus may hear differently to one another. What’s more, a person with tinnitus may hear differently throughout their lives. To think about, with, and through tinnitus therefore requires us to move beyond the ideal listener that  underpins much ‘knowing’ of sound.