Arya Thampuran, PhD candidate at the University of Durham whose research draws on fiction, life writing, visual art, television and film to explore how representations of embodied distress productively resist or re-script Euro-American psychiatric narratives of illness and healing, considers questions of care and embodied connection in Jacqueline Roy’s recently reprinted 2000 novel The Fat Lady Sings.
Revisiting Jacqueline Roy’s The Fat Lady Sings for the most recent Black Health and the Humanities workshop, against the backdrop of re-emerging concerns over the rapidly-spreading Coronavirus, I was struck again by how we have come to encounter interrelatedness in the last two years and how the pandemic itself has been differentially experienced depending on our positionality. Reflecting as it does on the remedial power of connection, Roy’s text profoundly registers how some bodies are forcibly excluded from an institutional field of care. This is a core concern of my PhD thesis: how we might reimagine relationality in ways that exceed the forms of individualism and insularity characterised by contemporary health discourse which is structured by a particular neoliberal model of selfhood. As Gloria and Merle’s relationship unfolds, we witness how touch becomes a potent means of rehabilitating the isolating, disenabling conditions they are under in the psychiatric facility. At various junctures, protagonists Gloria, and later, Merle, reach for each other and join hands in consolatory or affirming gestures. This agentive assertion of embodied connection is particularly significant in an environment that enforces disconnect. For Gloria, who is victimised by a racist elderly woman under her care who tells her not to ‘touch’ (Roy, p.72) her for fear of contamination, or the psychiatric staff who express fears that Merle will give them ‘rabies’ (p.126), reciprocal touch becomes a way of restoring one’s right to occupy space and place.
However, this begs the question of where the labour of care lies and how the body is implicated in the attempt to bridge the affective gaps created by society and its institutions: ‘I am tired of taking care of things… The energy I have goes in all the wrong directions. Got none to spare,’ (p.31) Gloria resignedly muses. Yet, care she does; seeing an over-medicated Merle lying ‘still and sad’, she ‘know[s] she [has] to stay with her and watch and keep her company, because feeling alone in this bad world eats into your bones’ (p.31). This is a strikingly somatic sense of the harm of apathy; of what happens when some bodies are rendered invisible, excluded from affective purview. This solitude seems to parasitically chip away at one’s sense of self. Roy’s text in many ways challenges the boundaries between visibility and autobiographical exposure, the ability to express oneself against the psychiatric paternalism that speaks for the institutionalised through its narrow diagnostic framing of lived experience. Gloria takes up the labour of bridging the affective gaps of the neglectful psychiatric staff: ‘[d]on’t matter how [Merle] feels, so long as she don’t give any trouble. That’s the only thing they care about’, (p.88) Gloria observes, her voice offering an incisive commentary on the conditionality of care within and beyond the institution. What I take from Roy’s text is the question of care, and how we might reframe relationality in ways that can meaningfully attend to the distinctiveness of individual experience, shaped as it is by distinct positionalities, while acknowledging our mutual interconnectedness. There is power to be found in reciprocal relationality, as Roy’s work potently demonstrates. There has been a shift in therapeutic culture towards a community model of care in recent years, a welcome change bringing with it greater acknowledgment of the benefits of a more de-institutionalised mode of healing. In many ways, the revived attention to Roy’s work through Evaristo’s Black Britain: Writing Back series is a timely intervention, given its (unfortunately) enduring resonances in our contemporary moment.
Though their expressions of distress seem diametrically opposed on the surface–Gloria’s loud public displays contrast with Merle’s silence–they are fundamentally bound by synchronicity in their shared experiences, which seem to bridge the gap that the psychiatric staff maintain. Through their alternating vignettes, Gloria and Merle restore their capacity for expression through mutual support. Gloria observes that Merle is ‘more connected now’; she ‘[c]an’t say how I know this, it’s just a feeling I have’(p.45). In seeing Merle as an individual on her own terms, rather than through a preconceived (and pathologising) diagnostic framing, Gloria effectively accommodates alternative modes of knowing, challenging the totalising authority of Euro-American psychiatry as an episteme and practice and its stronghold as the dominant interpretive schema for human experience. ‘How do you learn the ins and outs of human beings from a book?’(p.39), she asks evocatively, questioning an institution which enacts a constant state of surveillance and scrutiny yet fails to truly see. I wonder: what, then, is the role of empathy in the relational encounter? In a climate that has brought into sharp relief the structural asymmetries that mediate experience, how do we meaningfully think about the capacity for connection and care, especially when the experience of the ‘other’ might lie beyond our own experiential frame of reference? A significant question that has recurred through our workshops and the various material we have encountered is that of the ethics of engaging with distress. As humanities scholars, what are the particular ethical entanglements involved in bearing witness to, or reading, invocations of pain and distress? What purpose is this process driven by?
Esther Jones notes that physicians have noticed ‘a decline in the capacity of doctors to practice empathy towards their patients since the rise of science in medicine’ (Jones, p.185). This is largely attributable to the biologisation of racial difference and historically, the rampant racism in medicine. In the medical humanities, narrative medicine has often been held up as the vaunted medium for mediating into the relational encounter with the ‘other’ and bridging this affective gap. Indeed, Jones also notes the evidence suggesting the potential for literature to cultivate ‘empathy and compassion’(p.186). This has led to the incorporation of narrative training in some medical curriculums, in the hopes of creating a more empathetic, culturally-sensitive clinical encounter. However, this methodology is not without its limitations: Jones argues that narrative medicine ‘may not adequately deal with issues of racial and gendered difference in their development and application of methods for increasing empathy’, especially in the wake of persistent racial profiling and stereotyping within and beyond the realm of medicine (p.186). For writer Namwali Serpell, the empathy model of art becomes a ‘gateway drug to white saviorism, with its familiar blend of propaganda, pornography, and paternalism.’ Serpell suggests that it runs the risk of encouraging voyeurism rather than activism because we momentarily inhabit or indulge in the experience of marginality as spectators while remaining within the distanced safety of privileged social positions. Uncritical claims to empathetic identification, then, expose a fundamental ethical disconnect.
Angela Woods has further critiqued the tendency in narrative medicine to treat form as transhistorical and transcultural, and suggests that a full and robust account of genre remains to be articulated in approaches to narratives of distress (Woods, p.74). This is a gap I seek to address in my PhD research, in which I consider Roy’s text alongside other creative engagements with distress (including literature, visual and performance art, and film) to explore the possibilities of these mediums beyond the available Euro-American technologies for expressing distress—psychiatric or otherwise. By engaging with culturally and contextually-salient ontologies and cosmologies, we might move towards a more contextualised view of distress—one that is often obscured by the confoundingly disembodying tendencies of the contemporary psychiatric biologisation of distress; one that, in locating distress at the site of biological or neurological pathology, might run the risk of occluding the structural conditions that engender said distress. As a corollary, it might enable us to imagine the possibilities of healing and temporalities of (well)being beyond the limiting linearity of dominant recovery models.
Personally, I don’t have the answers to many of the questions I have raised here (not yet at least, and maybe never will, vexing as they are…). But perhaps there is something to be said about dwelling in uncertainty, and the humility it has driven me to cultivate. If not a sense of empathetic identification, then, perhaps what is called for here is dignifying distress narratives by reading them on their own terms. If Roy’s text offers some form of experiential access to the oppressive conditions that Gloria and Merle are subjected to, one that we might encounter in a different time and place (though not altogether unfamiliar, given their persistent, endemic quality), then this is quite distinct from a demand for empathetic identification or intelligibility. It seems, instead, a matter of holding space for these experiences, of reading these testimonies on their own terms without filtering them through our pre-existing interpretive schemas, psychiatric or otherwise. Against this, the acknowledgment of the limits of knowing—of our own perceptual and communicative capacities—becomes ethically salient. By critically engaging with our own reading orientations, and resisting the temptation to reframe said expressions through mediums intelligible to us, we might also dismantle the epistemic hegemony of Euro-American frames of reference. I believe this is urgently necessary in not just the cross-cultural psychiatric encounter, but in more general engagements with any narrative of distress.
Esther Jones, ‘Africana Women’s Science Fiction and Narrative Medicine: Difference, Ethics, and Empathy’, in Afrofuturism 2.0: The Rise of Astro-Blackness, ed. by Reynaldo Anderson and Charles E. Jones (London: Lexington Books, 2016)
Jacqueline Roy, The Fat Lady Sings (London: Penguin Books, 2021)
Namwali Serpell, ‘The Banality of Empathy’, 2 March 2019, The New York Review of Books <https://www.nybooks.com/daily/2019/03/02/the-banality-of-empathy/>
Angela Woods, ‘The limits of narrative: provocations for the medical humanities’, Medical Humanities, 37 (2011), 73-78