Health Humanities

Cite this Essay

MLA:
Srihari, Meenakshi. “The Medical/Health Humanities and IWE: A Survey Essay.” Indian Writing In English Online, 14 Aug 2023, indianwritinginenglish.uohyd.ac.in/the-medical-health-humanities-and-iwe-a-survey-essay-meenakshi-srihari/ .

Chicago:
Srihari, Meenakshi. “The Medical/Health Humanities and IWE: A Survey Essay.” Indian Writing In English Online. August 14, 2023. indianwritinginenglish.uohyd.ac.in/the-medical-health-humanities-and-iwe-a-survey-essay-meenakshi-srihari/ .

Illustration by Guru G. for IWE Online

(This essay is published in two parts.)

1. Introduction
2. Modalities of Medical/Personal Histories: Physician Authors and IWE
3. Restitution Narratives, Somebody Memoirs and the Biosocial Network
4. Health Literacy, Advocacy and Model Bodies: Graphic Medicine in India
5. Nation and Narrative Prosthesis
   1. Disability in Children’s Literature
6. The Ageing Body and kulturkampf
7. The Plague as Metaphor: Epidemic/Pandemic Literature

NOTES

WORKS CITED

I

Introduction

The Literature, Arts and Medicine Database of New York University (also called LitMed, http://medhum.med.nyu.edu ) on their website, calls the Medical Humanities “an interdisciplinary field of humanities (literature, philosophy, ethics, history and religion), social sciences (anthropology, cultural studies, psychology, sociology), and the arts (literature, theater, film, multimedia and visual arts) and their application to healthcare education and practice” (http://medhum.med.nyu.edu). There are at least two ways one can approach the Medical Humanities in India. One, drawing from the latter part of the definition, through the institutional adaptation of the “Medical Humanities” as a subject in medical education, a strand that seeks to adopt Rita Charon’s early formulations of narrative medicine as enabling the physician to thicken the patient’s story and treat them with empathy. The narrative output that could possibly be collected in IWE from this strand would be experiential narratives by doctors or notes by educators written in English, and an assessment of the narrative output would include studying courses on ethics introduced into the medical curriculum. The second narrative strand concerns itself with the representation of medicine and healthcare in literature and culture. Given the interdisciplinary nature of the MH as a field that encompasses the social sciences as well, MH narratives may include fiction, poetry, art, social medicine etc. While academia has seen huge strides in medical humanities in the past two decades, globally, the scale is still weighted towards studies of the humanities in medical education. The shift from the Medical to the Health Humanities is indicative of recentering the Humanities to this practice, instead of delegating to it the role of a service discipline to the basic/medical sciences. The importance of the Health Humanities is dual, in that it opens up medical texts to literary analysis, and it opens up literary texts as representative of a history or a historical consciousness.

The Health Humanities is also able to incorporate a wider range of theoretical paradigms outside of its focus on the body, including class, gender, race and disability. Disability Studies has co-existed with the Health Humanities. While the focus of the medical humanities has been disease which is located within the body, disability studies has almost always concerned itself with other people, notions of ability and inaccessible physical spaces. Disability scholars do not agree with the older medical model of disability which assumes the perspective of physicians and the medical model. However, as Michael Bérubé offers in his afterword to Disability Studies, “the biological materiality of the body is susceptible to a finite (and sometimes severely delimited) number of constructions. It is also worth remembering that most of our culture is socially constructed along the medical model to begin with (341). The lines between the disciplines are blurred: where chronic illness can be considered a disability experience. The confluence of the two disciplines is more useful, with MH garnering the attention of the physicians to bring changes in the healthcare industry and Disability Studies able to “redirect the change so that it better serves the needs of patients, especially patients with disabilities” (Herndl 597). Arthur Frank’s The Wounded Storyteller addresses healthcare from below i.e., from the perspective of the patient, and scholars such as G. Thomas Couser easily speak to both disciplines and shift between the two. The more inclusive Health Humanities, an opened-up version of MH, employs Disability Studies perspectives to go beyond the medicalised model of disability, such that it can represent the patient in various contexts.

While the Medical/Health Humanities is an established part of the medical curriculum abroad, there is no specific component called the “Medical Humanities” in the National Medical Council (NMC) approved undergraduate medical curriculum in India. However, Humanities finds a mention in the modules in the first 12 months of the course, that is, in the preclinical stage.[1] Similarly, a longitudinal program called AETCOM (Attitudes, Ethics and Communication) was introduced by the erstwhile Medical Council of India, implemented in 2019, and is taught throughout the four-year course. While MH does not find a mention within this as well, at the outset, AETCOM appears to align itself with some of the objectives of MH, including understanding bioethics, applying empathy to patient care, communicating effectively, and to “translate learning from the humanities in order to further [their] professional and personal growth” (38). A ninety-four page booklet on AETCOM developed by the MCI and found on the NMC’s website outlines the work to be accomplished by introducing such a course in the medical curriculum. That the module is assessable and demands a certain percentage of attendance from medical students attests to the seriousness of the course, though the methods of MH, which primarily involve drawing perspectives from other disciplines, are missing.

Despite the lack of clarity, MH has still been introduced in a few medical institutions in India. Gayatri Prabhu, writer and professor at Manipal University, for instance, taught a module on the Medical Humanities as part of the “Humanities and Community Medicine” course for students in the first year if the MBBS course. This was part of the MCI’s earlier 1997 curriculum, which had coupled Community Medicine and the Humanities together, providing no guidelines on the latter. Prabhu designs her component as a survey course, including within it

a) the body as projected by Renaissance painters and the significance of illustration (and description of body) in Vesalius’ canonical book (1543) on anatomy b) the impact of colonisation and trade in how illness traveled (cholera and international intrigues around the Suez canal) and how medicine was practised/developed in the colonies (finding a cure for malaria, or availability of cadavers for dissection) c) the power of metaphors and the role of war imagery in the discourse around cancer d) personal narratives of sexual identities and subjectivities, examples of our inherited gender biases e) a personal narrative of documenting a drug trial that did not practise ethical processes, and so on. (Prabhu 197)

Other medical institutions that have adopted the Medical Humanities, if not in their curriculum, then as some part of Medical Education, include the University College of Medical Sciences, New Delhi, which created a Medical Humanities Group in 2009, followed by Jorhat Medical College, Assam; Seth GS Medical College, Mumbai; and St John’s Research Institute, Bangalore. The Indian Journal of Medical Ethics dedicated a special volume to the Medical Humanities (vol. 9, no. 3, 2012) edited by Radha Ramaswamy, who runs the Centre for Community Dialogue and Change and has conducted interventional workshops with the Theatre of the Oppressed for Medical Humanities programmes across the country. The issue raises some important questions for medical pedagogy, if indeed an MH programme is adopted: “Is it necessary to identify texts that are directly about doctors or patients or about illness? This is the more popular, instrumentalist approach to MH. But more and more medical educators are arguing that “all good literature is useful because it keeps the imagination alive (11),” asks Ramaswamy.  The issue as we see here is the misplaced equivalence of humanities methods that demand a mode of close reading with empathy, open mindedness and inclusiveness, with ‘medical’ texts themselves, which may or may not be the texts introduced in question, though admittedly, these would seem the closest to lived experiences of doctors or other stakeholders of the medical institution. However, it is without doubt as important for MH courses to contain texts about grief, ageing or caregiving, as it is about patient-doctor communication, and these may be found in texts outside of medical texts as well. The institutional adoption of MH will be a welcome step when its principles and methods are given as much importance as the nomenclature.

This essay will examine the various modes and genres that illness has occupied as a subject within Indian Writing in English. In doing so, it will delineate a few major ways of looking at these texts, which may be entirely medical as in the case of a cancer memoir, or might contain illness as only a theme, though a major one, as in the case of a novel with a disabled character. It draws its examples from multiple genres and modes such as fiction, children’s literature, the memoir and graphic medicine, in order to examine the various strands within biomedical discourses.

Any survey essay on this subject, of this scope, and written now when the world has embraced more than ever before the inevitability of living on in the kingdom of the ill must begin with a niggling disclaimer – that this is not an exhaustive survey, for literary/cultural productions representing illness have increased manifold in the last decade alone. The second disclaimer is that within the widening multidiscipline that is the Medical Humanities, the study of literary representations can offer only one lens of analysis. However, literature still remains the most important resource for us to re/imagine the lived experience of a person with illness. Thirdly, the essay will focus on the entanglements between biomedical culture and the humanities, and not on alternative and “eastern” medical practices.

II

Modalities of Medical/Personal Histories:

Physician-Authors and IWE

Work by Indian physicians or those of Indian origin have mostly been popularized through the oeuvre of the bestselling and popular authors of Indian origin, Siddhartha Mukherjee, Atul Gawande, Abraham Verghese and Paul Kalanithi. While their writing is most popular for different themes within medical writing – medical performance and advocacy (Gawande), fiction (Verghese), the history of medicine (Mukherjee), or an account of the doctor-as-patient (Kalanithi) – they all contain auto/biographical writing in which the language of medicine is invited to occupy experiential language such that the works are cultural and not merely case studies. The narrative structure of the physician auto/biography – episodic life writing with varied temporalities embedded in it – makes it “storylike and temporally bounded” (Pollock 108). These are cultural studies of not just physician-patient interaction but cover a myriad of themes including but not confined to burnout, death and dying, medical education and the ethical conundrums faced by physicians. Physician auto/biographies are thus not just narrativizing acts but “public constructions of domain of medicine” (Pollock 108).

Siddhartha Mukherjee is perhaps responsible for popularising medical writing to the extent that nobody else has, largely owing to the Pulitzer winning The Emperor of all Maladies (2010), a book touted to be not just a “tour de force of science writing” (Shetty 220) or a remarkable piece of popular science, but simply put, literature (Linklater, Review). Mukherjee begins this “biography” of cancer with a nod to Anna Karenina: “Normal cells are identically normal; malignant cells become unhappily malignant in unique ways” and guides the reader from the beginnings of human history, through the introduction of surgical intervention and his own patients down to the astonishing new ways in which gene therapy has and is set to change the face of cancer treatments. It is at this point that his second book Gene (2016) takes off: “If cancer … is the ‘distorted version of our normal selves,’ then what generates the undistorted variants of our normal selves?” (757). Gene narrates the history of genetics from Mendel to the Human Genome Project, though its prepublication history is dotted with debates.[2]

However, what is Indian about Mukherjee’s writing? It is through journalism that the cultural affiliation with India first emerges in both Gawande and Mukherjee, especially in the latter, whose Emperor if set in any cultural context, is American, and whose Gene travels through India only in its chronicling of genetic developments across the world. In an essay such as “Runs in the family” published in The Annals of Science section of The New Yorker, for example, we glimpse the Calcutta of Mukherjee’s childhood and the history of psychiatric illnesses including schizophrenia and bipolar disorder that runs in his family alongside research about synapses and inherited genes in Stanford and elsewhere. Mukherjee is thrilled that his father translates gene as abhed (“indivisible” but also “identity”), able to see that the scientific history of the gene has been culturally transcoded.

On the same continuum as Emperor and Gene is Mukherjee’s newest book, Song of the Cell (2023), which traces the history of the cell – richly described using figurative language. While shunning any relationality to the subjective in its title (it is neither a “biography” nor an “intimate history,” but an “exploration”), the book contains explicitly autobiographical sections dealing with Mukherjee’s life.

India appears here often and not always in direct correlation to research around the gene – whether in the brief history of the smallpox deity, in a passage about ecological interconnectedness that drew on the story of the surgeon Sushrut who used skin grafts to reconstruct parts of the face or in a baffling (and perhaps, misplaced) analogy of the Vamana-Bali legend, to the pandemic growing so large that its foot pushed humankind below the ground. We see Mukherjee reveal himself from behind histories of blood circulation and pumps in a chapter on the heart, the corporeal centre of belonginess and by extension, citizenship. If one thought the anthropomorphising of nonhuman biological entities had stopped with cancer being crowned the emperor, we are wrong, as the Song of the Cell introduces us to its kin that contemplates, belongs and thinks.

Mukherjee’s contemporary and as popular a literary persona as a doctor, Atul Gawande has traced an interesting career trajectory so far.  What sets Gawande apart from other science writers in this generation is “the search for patterns across knowledge domains and systems of every kind” (Sundaram IWE Online). Gawande’s early training in politics and philosophy is evident in his later work where he writes about medical disparities and asks fundamental questions about the health and humanity. His comparison of a surgeon to that of a politician is striking:

I thought surgeons were like politicians. Surgeons are grappling with having limited information and knowledge, imperfect science, but have a necessity to act in the face of both imperfection in their own abilities and imperfect knowledge in the world. I saw a lot of the same incredible range of characters and people … I wanted to be more like surgeons and more like the politicians I admired who could make decisions, live with the consequences, and learn from the consequences. (Interview)

The modus operandi followed by Gawande is simple: he identifies a problem within the healthcare industry (most essays beginning with a dramatic case in point demonstrating this problem), deconstructs the issue, and suggests a solution to build up the sector again. A practical tool offered for such a method is the checklist, a method first adopted by nurses in the 1960s to make sure the vital signs of a patient were checked off before a procedure. When in 2011, a Johns Hopkins doctor decided to use a precautionary checklist for surgeons in his ICU, including an instruction to wash their hands, he was astonished to see forty-three infections and eight deaths had been prevented by ticking off seemingly tiny boxes. Checklists, according to Gawande, can give doctors “the minimum necessary steps and make them explicit. They not only offer the possibility of verification but also instil a kind of discipline of higher performance” (36).  It is the quest for this higher performance – one that goes beyond mere competence and asks, “what does it take to be good at something in which failure is so easy, so effortless?” (4) – that we see in Gawande’s Better: A Surgeon’s Notes on Performance (2007).

Gawande begins each chapter with an anecdote or a case that goes to prove his point, and makes impersonal reflections at the end of these chapters about policy or data. This refusal to stick to one mode of narrative, generally confessional and reflecting upon the physician’s growth, makes Gawande’s writing a unique blend of different registers. Such a  mode of writing has not been without scrutiny or has not fully developed without hiccups. For instance, Anne Hudson Jones reads Gawande’s 1999 New Yorker essay, “Whose Body Is It, Anyway?” to delineate his narrative ethics through the careful structuring of narratives within the essay. Written about the physician’s role in guiding patients through their decisions, the three stories within the essay support Gawande’s stance that in extremis, a good physician will always make the best decision for their patient. Hudson’s major qualm is that there is no counter story to this – what about patients who defied the doctor’s decision for the good? (2014). Gawande seems to have realised this himself – when the essay was later collected in the 2002 volume Complications, the very next essay that followed was a counter story. Gawande’s narrative ethics in his writing is thus one that has developed and changed  over the years such that he realises, acknowledges, and betters his narrative qualms.

While the books that precede Being Mortal: Medicine and What Matters in the End are about medical performance and medical oddities, the 2014 book contains some of Gawande’s most profound meditations on death and dying, subjects that physicians, according to Gawande, are least equipped to deal with. Taking as a starting point his father’s death and his desire to ensure comfortable end-of-life options for him, Gawande argues in the work: “Our reluctance to honestly examine the experience of aging and dying has increased the harm we inflict on people and denied them the basic comforts they most need”.[3]

Abraham Verghese is popular for his memoirs, My Own Country and The Tennis Partner, and the novels Cutting for Stone (2009) and his latest, The Covenant of Water (2023). His non-fiction embodies the many themes and modes we have seen in Gawande and Mukherjee: it is full of thrilling medical stories, and it contains revelatory episodes from the life of the vulnerable physician-as-person. In fact, there are also several similarities between Verghese’s introduction to the HIV pandemic and to our own experiences with COVID-19; we see resonances in the fear, isolation and measures people took in the description. For instance, Verghese writes of the respirator used for the first AIDS patient in Johnson City:

Some favored burying the respirator, deep-sixing it in the swampy land at the back of the hospital. Others were for incinerating it. As a compromise, the machine was opened up, its innards gutted and most replaceable parts changed. It was then gas disinfected several times. Even so, it was a long time before it was put back into circulation. (My Own Country 12)

In Kalanithi (Verghese writes the introduction to the book), the vulnerability is directed inwards, and we see the doctor as the wounded storyteller in When Breath Becomes Air, with the neurosurgeon grappling with his identity as a physician and a patient who both teaches and learns about death and the process of dying: “Death may be a one-time event,” he tells us, “but living with a terminal illness is a process” (161).

Unlike Gawande, Verghese, or Mukherjee, whose oeuvre has doggedly stayed confined to medical themes, there are still other physician-authors from the country whose work draws from medical experience but which does not colour all their work.

An early example would be the poetry of Gieve Patel, a playwright, poet, painter, and doctor; much of his poetry inspired by his clinical experience. Patel addresses the human body undergoing various biological changes or medical procedures through a doctor’s subjectivity even as he is apathetic towards the latter. In “Toes,” for instance, Patel acknowledges that doctors in India have come to accept the demigod status assigned to them by patients, when in a bout of self-reflexivity after a patient touches his feet “at a small private medical clinic in densely packed Central Bombay,” the doctor persona says,

. . . I too acknowledge

His humanity and god in him but whereas mine is regal,

Official almost and therefore supernally humble.

His would always remain short of cringing. (154)

Patel goes on to compare this act, perhaps sardonically, to one that might as well occur in a forest with a wise man whose blessings people come seeking, accepting the charge that doctors sometimes play God. In one of his more popular poems,[4]“Post Mortem,” the use of passive voice presents the act as one that reinforces the medical discourse of the body-as-object: “It is startling to see how swiftly/ A man may be sliced /From chin to prick,” but also how the doctor performing the postmortem is doing so with utmost objectivity:

all these insides

That have for a lifetime

Raged and strained to understand

Be dumped back into the body,

Now stitched to perfection,

Before announcing death.

The unfeeling, distant doctor returns here. In another poem, he sets up the commonly used medical metaphor of a combat, but stations the remorseful doctor persona along enemy lines: “. . . the family suffers at your hands,/ Suffers every injury you’d hoped/Not to inflict upon an enemy” (“Atomised” 153). Other poems, such as “Forensic Medicine,” “How do you withstand, Body,” “Public Hospital,” and “How to Kill a Tree” also have explicit medical themes that often, if not always, explore the subjectivity of the physician.

Despite the all-powerful and agentic perception of doctors that seems to populate poetry and some fiction, there are also narratives that station them as witnesses and not necessarily agentic actants. Hansda Sowvendra Shekhar’s “Getting Even,” collected in his anthology of short stories, The Adivasi Will Not Dance (2015), is one of the few stories in which the biomedical theme is fully developed by the physician-author. Narrated from the perspective of a doctor in a government hospital in Santhal Pargana, a medicolegal case unfolds as the doctor witnesses the Santhal-Thakur conflict that results in the framing of a juvenile boy with a rape charge. The doctor here is positioned such that he cannot ensure justice, even as injustice unfolds around him:

I submitted my findings and the lady doctor submitted hers. We never got to know what happened with the case. We never saw those people again. The same policemen came to the hospital with other cases, and though I was tempted on many occasions to enquire after that particular case, good sense prevented me from taking too much personal interest. (Shekhar, “Getting Even”)

Even as Hansda breaks the cultural stereotype built by cultural media about the doctor being the hero who tackles a dramatic setting requiring one to investigate an intellectually stimulating medical mystery, he positions the doctor firmly into the role of a witness. Thus, we see the emergence of a human rights discourse where a literary-testimonial function is allotted to the doctor.

Another intersectional perspective, this time via gender, is brought in by Kaveri Nambisan, a physician-author whose work spans memoir, fiction, and children’s writing. A Luxury Called Health: A Doctor’s Journey Through the Art, the Science and the Trickery of Medicine (2021) throws light on gendered perspectives in the medical field, reproductive health and the gender prejudice that percolates to the society through the clinic and vice versa. Describing her journey as a young surgeon in a male dominated field, Nambisan recalls:

Surgery is gendered territory, and comes with unspoken tensions for a woman, some imagined, others real. Achievements get noticed and failure is sniggered at. I had already come across male surgeons who were disgruntled by the ‘foreign-body’ (in more ways than one) in their midst. Sexual innuendos, unwanted physical contact, harassment and bullying, though rare, did happen. I managed to get past the unpleasantness, thanks to many factors which I will let be.  (Nambisan, “Safaai Karmachaari”)

From gendered bias and harassment in the clinic, she goes on to speak about how “the most challenging cases a doctor must treat will be about those parts of the body which society has decreed we hide from public gaze” (“The SFL Triangle”). She makes this comment in a chapter that traces the history of syphilis and ends with a note on how social taboos, the segregation of sexes and the encouragement of gendered inhibition have a causal effect on acts of perversion.

Gender bias in the profession is not a recent phenomenon, as narratives by the earliest “lady doctors” in the country will show us. Examples from colonial India include Anandabai Joshi, Rukhmabai Raut, and Kadambini Ganguly, who each had to battle patriarchal norms on their path to becoming doctors. While these women have not published memoirs, their words come to us from other kinds of life writing, including biographies and collected letters. Anandabai Joshi, born in Pune into a conservative Hindu family and married at the age of 13, went on to obtain her medical degree at the age of 21 from the Women’s Medical College of Pennsylvania[5] after great resistance from a colonial Hindu society that condemned crossing the Kaala Paani. Joshi’s life has been chronicled by the American feminist writer, Caroline Healey, in The Life of Dr. Anandabai Joshee, a book that has been called ‘cringingly orientalist’ (Rao “The Good Wife”). Her letters have also been collected by the social historian Meera Kosambi in Fragmented Feminism, who traces a fragmented feminist image across personal correspondence and public representations of the life of a woman whose popular representations in movies and biographies threatened to overshadow all that was feminist and non-conformist about her. A not very different story unfolds in the life of Rakhmabai Raut, another of India’s earliest doctors. Married at 11, she lived a life raging against child marriage in India, choosing to live separately – an event unheard of at the time – and waging a long court battle to ensure this. Raut’s story is recorded in the letters she wrote to the Times as “a Hindu woman,” and collected in Sudhir Chandra’s Enslaved Daughters (2008), along with details of her court case. Kavitha Rao’s Lady Doctors: The Untold Stories of India’s First Women in Medicine (2021) takes up the case of six such female physicians, and notes their contribution to medical education in India – they forced conservative colleges to admit Indian students, dismantled the notion of ‘zenana medicine’ which favoured British doctors over them, and set up institutions with an enduring legacy. Besides, they had already ushered in certain reformations in the society:

the respect that the lady doctors earned in their professions helped them move seamlessly into public life, and encouraged other women to be involved in public policy. Muthulakshmi [Reddy] helped to abolish the devadasi system, win women the vote and raise the age of marriage. Kadambini joined the Indian National Congress and was one of the first women to speak at their conferences. Rukhmabai, of course, defied an entire society to make it acceptable for Hindu women to divorce their husbands. Mary [Poonen Lukose] was the first Indian woman to be appointed to a legislature. (Rao “Epilogue”)

III

Restitution, somebody memoirs and the biosocial network

Memoirs of illness and disability in India are weighed more towards the “somebody” than the “nobody” memoir—a distinction drawn in 2002 by Lorraine Adams and used with critical acumen by Thomas Couser in his 2013 book Signifying Bodies. The author of the illness memoir is already of some renown before the publication of the book in a somebody memoir – and hence already has a reading audience –  while the nobody memoir’s author comes to be known only after the publication of the book.[6]

India’s ‘consumption’ of its celebrity lives makes both their professional and personal lives part of the public sphere and evokes an interest in the grey areas in their lives as well, as seen by the recent public debates around Sushant Singh Rajput’s mental health and suicide or Deepika Padukone’s campaign about her journey with depression. While Bollywood clearly remains what the general public is most interested in, cricket comes a close second (collaborations between the two are always appreciated, as seen in biopics of cricketers or popular OTT series on match-fixing). These lives are highly visible. Celebrity pathographies that have attained popularity include the Parsi writer Russi M. Lala’s Celebration of the Cells: Letters from a Cancer Survivor (1999); writer and filmmaker Lata Mani’s Interleaves: Ruminations on Illness and Spiritual Life (2001);[7] The Test of My Life: From Cricket to Cancer and Back by cricketer Yuvraj Singh (2013); Healed, by actress Manisha Koirala (2018); and Close to the Bone, by the actress and model Lisa Ray (2019), among others. Within these works can be found differing modalities and voices; for example, Lala’s memoir is written in the form of letters to a friend who might need some guidance on how to live with cancer, and hence is clearly written to an imagined audience of cancer survivors. Lata Mani’s memoir is not about illness per se but the debilitating aftermath of an accident resulting in brain damage, hence exploring what it is to be rendered disabled. Both Test of my Life and Close to the Bone are collaborative memoirs; while the former has been written with Sharda Ugra, a sports journalist, and Nishant Jeet Arora, Singh’s manager, the extent of collaboration in the latter is unknown.

In Close to the Bone, a consciousness about how Ray’s body looked in front of the camera soon paves way to a consciousness of the changes within the body as cancer makes itself visible. Ray’s awareness of how her body has to look a certain way is acute: “I always felt self-conscious,” she says of her time in front of the cameras, “you have to think about how to tilt your head and how to suck in your non-existent gut while photographers click away. You are expected to look flawless. Ambition and judgment wrap around your skin, hug your form” (Ray, Prologue). There is a certain disciplining of the body at play here, governed by a self-fashioning according to the “ideals” of the movie industry. Once Ray gets cancer, the awareness returns with the recurring illness metaphor of war:

The treacherous enemy had stealthily invaded my body and reproduced its tribe until it was swelling and ready to break free of its confines. A takeover plan was about to be executed in the dimness within. The shadowy enemy was scheming about how and when to obliterate the host—me. (41)

The thread connecting the Bollywood pathography with the sports pathography could be the importance accorded to the disciplining of the bodies in both cases, and the conscious awareness of the breaking down of this body. Both Ray and Yuvraj Singh, for example, foray considerably into their experience in their fields, and the body plays a conspicuous role in both. These memoirs bring to the fore what sociologist Chris Shilling calls body pedagogics. What Singh learns on the field by way of disciplining the body proves an important pedagogical experience for him:

In ten years of cricket I had become an expert in anatomy. Rotator cuff, metatarsal, ACL, patella, adductors, I knew all the proper medical words for body parts that hurt. Like in Bangalore before the World Cup match with England, I promptly identified my neck pain as being caused by the bulge between my C4 and C5 discs . . . This kind of knowledge comes at a price. As a professional sportsman you are constantly in conversation with your body, coaxing, pleading, demanding, and a time comes when you start thinking you know your body very well. When it still defies you it is a surprise but you know that a conversation can be had, a bargain can always be struck. (Singh, ch. 3)

And later he says,

As athletes we are trained to deny pain, to train and nourish our bodies lifelong so that the body will leave the mind alone. If it demands our attention, we are conditioned to make excuses to it and go on, play on, play hard, play harder. (Singh, ch. 3)

Singh and Ray work in industries where an acute consciousness of the body is already at play. In a way, these are already “distressed” bodies – bodies that are “stretched apart from our customary lives” (Leder 1). This is complemented later by the consciousness of a changing body due to illness.

The formation of a biosocial network and the participation in a biosociality, that is, a network of identity terms that takes as its common denominator a shared bodily condition of vulnerability (Rabinow 1996, 99), by a self that recognizes the presence of a connected self is explored by Pramod K. Nayar in his essay on celebrity cancer memoirs (2022). Reading Koirala’s Healed and Ray’s Close to the Bone, he argues that there are modes of storytelling each film star uses that reach out to a wider public, including blogging and other “narrative appurtenances” such as a list of books in Koirala, to “offer life lessons from their case histories” (90). Singh benefits from this sort of narrative care when he picks up Armstrong’s cancer memoir again to find respite in it (“The Test of my Life”).

The memoirs of the writer Ved Mehta, who was blinded by meningitis at the age of three, are an early instance of disability writing, though they are not entirely about his life with blindness and hence cannot be shelved as pathographies and have often been examined for their contribution to the genre of travel writing. Works such as his autobiography Face to Face (1957) and Vedi (1982), the third part of his 12-volume memoir Continents of Exile, outline his life with blindness. In Vedi, for example, he delves into recollections of a disabled boyhood spent trying out sports, acting in a movie, meeting other blind students, and ‘feeling’ and understanding echoes and reflections (109-120).

On the other end of the ‘somebody’ spectrum is the ‘nobody’ memoir, in this case, a pathography written by the lay person. These include Anup Kumar’s The Joy of Cancer (2002), Anita Jayadevan’s Malicious Medicine: My Experience with Fraud and Falsehood at Infertility Clinics (2009), Vijay and Neelima Bhat’s My Cancer Is Me: The Journey from Illness to Wholeness (2013), Nazeem Beegum’s My Mother Did Not Go Bald (2014), Neelam Kumar’s To Cancer, with Love (2015), and Ananya Mukherjee’s Tales from the Tail End (2019). As evidenced by the titles of at least half of these books, Indian illness narratives tend to fall in line with the narrative of self-discovery, a theme frequented by self-help books. While narratives explore in detail diagnosis, treatment and the formation of support groups, at the centre of the work is getting healed, not only of cancer, but of a previous self, in favour of a more “authentic self” that is full of a renewed optimism towards life. Dwaipayan Banerjee’s work on the cancer narrative studies how,

the conventional premise of the Indian cancer memoir is that cancer not only allows the opportunity to recover life but also serves as a precondition for having a life. There is no space here for grief, for the paradox that endurance and survival come at difficult social costs, or for the possibility that life might be lived in the irresolute space of its debris. (129)

Very few memoirs actually choose to deviate from this form of the restitution narrative. An illness narrative type proposed by Arthur Frank in The Wounded Storyteller among others such as the Chaos, Quest and Testimonial narrative, the restitution narrative follows a basic storyline: “Yesterday I was healthy, today I am sick, but tomorrow I’ll be healthy again” (1997, 77). The restitution narrative can be retrospective (as in the case of the memoirs quoted above), prospective – as in the case of patients who choose to shrug off the worry of worsening health, or institutional, where institutions focus more on life back to health than on the treatment or the lived experience of illness in publicity material (Frank 79). The title of Yuvraj Singh’s memoir is tellingly analogous to the retrospective restitution narrative. While these narratives exhibit the natural tendency to get better, they also tend to serve as models to how illness narratives should be told, running the risk of universalising the illness experience. The few memoirs that do choose experimental forms are relatively lesser known or self-published. Tales from the Tail End, Malicious Medicine, and My Mother Did Not Go Bald are all examples that present counter-narratives.

The slim Tales from the Tail End by Ananya Mukherjee covers all important loci of women’s cancer narratives (diagnostic scans and gendered bias, the acute consciousness of the cancerous body, chemotherapy and the loss of hair etc.) but does not dwell on any of them in much detail. The chapter on cancer “survivor” groups, a term she treats with humour, argues that those with cancer deserve more freedom to choose their antidote to a life plagued by terminal disease, one that deviates from the society’s charitable and sympathetic gaze. The book  teems with playful ideas of these antidotes, such as a Tinder for cancer survivors where one can “find their (bone marrow) match” (58).

A volume that fits into the Life Writing genre but is still distinguished from the memoirs mentioned here is AIDS Sutra (2008), edited by Negar Akhavi.  While the lives described in the book are those of lay persons, the writers are reputed. The book has been described by Dilip K. Das in Teaching Aids as fitting into a pedagogical context, that of AIDS activism, the context of social responsibility and the individual struggle to live with the disease (Das 88-91).  It has been commissioned by the Melinda-Gates Foundation, and it brings together writers of literary and journalistic repute to write first person pieces about AIDS in India. Some of these writers include Salman Rushdie, Amartya Sen, and CS Lakshmi. The essays in the volume include life writing – those about the everyday life of HIV affected people, and life histories of those who survived and died of HIV, and travelogues about the sex workers of Andhra Pradesh and the red light districts of West Bengal and Manipur. The volume attempts to cover the lives of various stigmatized groups affected by the epidemic.

IV

Health Literacy, Advocacy and Model Bodies: Graphic Medicine in India

Graphic medicine in India is makes its appearance more noticeably in public health, and production in the field has seen a spike especially since the onset of COVID-19. Simply put, graphic medicine is the intersection of the discourse of healthcare and comics, combining “the principles of graphic medicine with an exploration of the visual systems of comic art, interrogating the representation of physical and emotional signs and symptoms within the medium (Williams “Introduction”). Graphic representations of illness are unique because people are able to combine their perceptions and experiences with the knowledge that exists already in healthcare discourse, thereby producing newer knowledge, and newer iconographies, of illness. Only a few graphic pathographies exist in India that are neither institutionally driven nor are celebrity memoirs. Neelam Kumar’s To Cancer with Love: A Graphic Novel (2017) is a graphic adaptation of her book length memoir of the same name. A “nobody memoir,” the comic was illustrated by Moovix Production House, and produced with the help of a crowdfunding campaign, backed primarily by Ratan Tata and Amitabh Bachchan. It narrates how Neelam’s breast cancer returns for the second time, and has a restitution narrative frame. The narrative fits into the group of cancer books that see a fresh lease of life post the onset of disease when they find a more authentic self. For instance, Kumar’s bio in the graphic narrative reads: “Neelam thanks cancer for coming into her life – twice. Because of that, she brings more depth and richness into the many hats she dons” (Kumar). The book utilises the medium to switch between memories and creates a second persona – Carol – who, plucky, full of mirth, and optimistic, appears to pull Neelam out of despair every time she thinks of her cancer.

Kalki Koechlin’s graphic memoir, called The Elephant in the Womb: Declarations of a Sudden Mother (2021), illustrated by Valeriya Polyanychko, is not a pathography but a pregnancy memoir.  Nevertheless, it neatly fits into a Medical/Health Humanities paradigm for its attention and deconstruction of stereotypes and mislabels around women’s reproductive health. The graphic memoir picks up on taboos around pregnancy including various nomenclature, such as “miscarriage,” which places the responsibility of having wrongly carried a baby on the woman, even if 85% of miscarriages happen in the first trimester. It is no surprise that most image-metaphors used in the book are about loads and weights, such as Kalki carrying a large bag that announces “I will never, ever forgive myself” in the section about miscarriage, or the analogy with a large beach whale, the references to size reinforcing the emphasis on the body being a spectacle and figuratively, a burden to carry about. The “unbearable weight” of a culturally and socially inscribed female body, especially that of a mother, is created when Western biomedical and legal discourses label the mother a body and the foetus a person. The blame game that occurs after a miscarriage, internalised by the mother, also happens because of this same diminution of the mother to an “incubator to her fetus” (Bordo 79), while the fetus gains a subject position entitled to legal and biomedical protection, as Susan Bordo argues in an essay aptly titled “Are Mothers Persons?”

While Koechlin points to the lack of research about reproduction and women’s health, she is quick to point out how “the market for women’s contraceptive methods seems to be thriving” (unpaginated), especially in contrast to contraceptive options that men have. These experiences hardly seem to be reflected in social media, which talks of mothers only in stereotypical terms, either as “the crazy hormonal bitch” or as the “magical, maternal and filtered Instagram mum” (unpaginated). Koechlin experiences pregnancy as an intense form of exercise or an “extreme sport” in which, “being in the body, physically doing it, was the only way to actually prepare for it” (unpaginated).

Koechlin’s memoir invites the reader to treat her book like a pregnancy journal as well in the ruled pages she provides for notes interspersed with her narrative. The book is thus multimodal: heavily populated with text, illustrations between texts, splash pages, funny jibes at the medical system, and blank pages for the reader. This juxtaposition of various modalities of writing reduces the narrative distance one might expect to find between a celebrity author and the reader, and situates the book as an autobiology – “narratives of sense-making through forms of biological practice, as well as wayfaring narratives” (Harris 60) which exhibit playfulness. The material conditions of storytelling here – a book that invites the reader to include their narrative within Koechlin’s story – emphasizes the sociality of illness narratives.

“Patient No. 259,” written by Sudhanya Dasgupta and illustrated by Manisha Naskar is another graphic pathography published in 2022. Situated within an HDU (High Dependency Unit), the narrator recollects her mother’s hospitalisation following a cerebral attack. Memory is a significant theme as Dasgupta navigates between her own memories and her mother’s, as she grew up in post-partition Bengal, to discover that her mother “has become larger than life in her illness” (219). Written in the form of a diary, the work incorporates illustrations of her mother, equipment from the hospital, and a scan of a health policy ID, adding to the materiality of the narrative. A major theme in the “illness” component of the narrative is that of “embodied paranoia,” about the effects of medical colonisation: a term that “suggests the internal conflicts that attend this fear of colonization; what is involved is more complex than simple fear for one’s body,” and is in fact, a fear of those institutions that are “ostensibly designed to help [the patients]” (Frank 172). Dasgupta describes her mother’s complete transformation, her coma and her weight loss after she contracts an infection within the ICU, and how the “dubiously written hospital release order [did] not spell out any of these realities” (223). The colonization of medicine, accomplished also via the endless bureaucratic processes and medical labelling, reduces the person to a medical object. Once Dasgupta switches to her mother’s childhood memories, illness does not reappear explicitly but remains in the bald, scarred head of her mother as a child, thickening her mother’s story. The partition remains an important rejoinder of the theme of “home” that runs through the story (and the anthology) – both corporeal and geographical.

It is in the field of public health that a large corpus of comics on illness (and comics per se) have been produced. “Social” comics produced by NGO-sponsored or an outcome of workshops conducted by NGOs account for a good number in the Indian comics industry. An example that could find a fleeting mention in the MH section is a slim volume called “Comics Epidemic” by the Wellcome Foundation and the NGO SNEHA. Edited-mentored by Chaitanya Modak, several of the comics are in Hindi, and some contain a smattering of English, and have been drawn by participants from the Dharavi slums. Clearly set in the mould of the grassroots comics style, pioneered by Sharad Sharma of World Comics India, these comics cover themes such as public safety and health, nutrition and well-being, and adolescent sexuality. Another example would be a couple of comics collected in the Vidhyun Sabahney-edited First Hand Graphic Narratives II: Exclusion Comics, a volume that addresses social issues in India in a two-fold manner. Firstly, by fictional representations of the issues, and secondly, by placing it in the context of an infographic-ally presented India Exclusion Report (IXR 2016), a document produced annually by the Centre for Equity Studies in New Delhi to study the exclusion of vulnerable groups and accessibility to public goods. In “In the Shadow of a Building”, Sabhaney et al tackle urban health through the story of a farmer, Ashok, who joins a hospital construction site in a city to pay for his daughter’s TB treatment. Ashok encounters other labourers with stories of their own, some ill because of tobacco usage, some unable to access healthcare because of their marginalised status. The theme of embodied paranoia returns here, a fear of the institutions and underlying structures that govern access to healthcare as the protagonist finds himself both literally and figuratively in the shadow of healthcare access.

Graphic medicine uses personal stories for public health communication. However, considering the cost of graphic novels, the accessibility of such texts to a wider public is suspect. A more accessible model is that of the web comic, in enterprises such as the Orijit Sen et al. produced Indian Agriculture and Food Security. The comic tackles the right to food and the development of the Public Distribution System (PDS) in India, examining in graphic detail the government’s measures to eradicate anaemia, for example. This comic serves as an example of a health literacy comic that can question policy and can connect bodily ailments to inequities existing in the nation.

V

Disease, Nation and Narrative Prosthesis

We inevitably begin the section with a nod to Amitav Ghosh’s The Calcutta Chromosome: A Novel of Delirums, Fever and Discovery (1995). It is also fitting to introduce the text after the sections on science and life writing because of its addressal of both genres. TCC is a science fiction novel that takes as its premise the missing scientist Murugan, who has been researching Ronald Ross, the Nobel Prize winning scientist whose work on Malaria was conducted in Calcutta. Murugan realises that Ross’s discovery was manipulated by a subaltern group for advancing its own much more advanced scientific discovery. Claire Chambers makes the important point that Ghosh’s novel shows how the rhetoric of science shares much with that of fiction, but also “deliberately [confuses] boundaries: between realism and fantasy; science and religion; ‘truth’ and fiction” (59). Ross’s Memoirs, published in 1923, forms Ghosh’s primary source in creating a historical frame for a fictional tale. This fictionalising of history, examination of scientific discourse and postcolonial approach have earned the novel several titles in literary criticism: it has been called “social science fiction” (Nelson 2003) and a “counterhegemonic narrative that subverts the imperial perspective on medical historiography” (Prasad 137). In terms of the disease itself and its narrative possibilities, while Malaria spreads in certain places, that is, while it has an endemic quality, there is also the possibility of it becoming an epidemic. Malaria thus is a disease of place, but also displacement, and hence the malaria narrative invokes “the terror of epidemic disease more often associated in the nineteenth century with acutely contagious illnesses such as cholera or plague. This means that narratives of malaria use figurative values of both space (endemic) and time (epidemic) to map the risk of illness” (Howell 3). Ghosh’s critique of biopolitics is ultimately grounded in biology.

In the colonial context, medicine and health aligned themselves with the notion of power and control.[8] In Rushdie’s Midnight’s Children (1981), the story of Saleem Sinai, who is born as India gains independence, this notion of power, medicine and knowledge is seen for example in the elderly boatman Tai’s reaction when Saleem’s doctor-grandfather, Adam Aziz retains the pigskin medical bag he gets serving in the British Army. To Tai, the bag represents “Abroad; it is the alien thing, the invader, progress. And yes, it had indeed taken possession of the Doctor’s mind” (16). The bag becomes symbolic of both medicine and the Empire’s invasion of India. Though medicine or illness does not colour the whole book, inebriation or alcoholism is a strong theme, a condition prevalent as a ‘clinical’ condition as early as the eighteenth century which gained prominence in the mid-nineteenth century (Porter 1985). Sam Goodman’s study of Midnight’s Children for English Studies shows how Rushdie depicts the three stages of alcoholism through Ahmed Sinai’s character in the novel: “a pre-alcoholic stage of intoxication, a Beta phase of inebriation through daily consumption which leads to social and physical problems, and finally a Delta/Gamma addiction involving inability to abstain and a loss of control” (313), and symbolises, through his character, how the “new Indian subject” in their quest to mimic the west, is torn between their Indianness and Anglicisation.

Ill or disabled characters in IWE are at several points set in the mould of what Mitchell and Snyder would describe as “narrative prosthesis,” where the disabled body is inserted into a literary narrative as a metaphorical opportunity:

Through the corporeal metaphor, the disabled or otherwise different body may easily become a stand-in for more abstract notions of the human condition, as universal or nationally specific; thus the textual (disembodied) project depends upon—and takes advantage of—the materiality of the body. (50)

These characters have always existed in Indian literature: the blind couple that curses Rama’s father, who accidentally kills their son, the scheming hunchback Mandara, and then the distorted demons Viradha and Kavandha populate the Ramayana. The Mahabharata too relies on disability for several of its plot points, including the Kurukshetra War, which occurs because of the sons of the blind king Drithrashtra, or his wife Gandhari, who wears a blindfold throughout her life to share her husband’s misfortune. The disabled have been relegated negative and marginal characters in these epics. In contemporary literature, the portrayal of disabled and ill characters in Indian fiction takes on symbolic value that represents or subverts nationalistic tendencies towards the marginalised and/or towards the concept of ‘normalcy.’ We will see that there are also counternarratives that challenge ableist points view and represent the political and social lived experiences of the ill person.

Firdaus Kanga’s Trying to Grow (1997) is a bildungsroman that follows the life of the 8-year-old Parsi protagonist Daryus Kotwal, nicknamed Brit after the condition he suffers from, osteogenesis imperfecta or “brittle bones” disease. He grows up confined to a wheelchair with his parents, Sam and Sera, and sister Dolly. Scholarship on the novel has treated it as a Bombay novel with commentary about its depiction of cosmopolitanism (Hawley 2001; Ashcroft 2011), focusing on how Kanga’s protagonist grows up in a Parsi household with clear western influences, enjoying Chopin, dancing and sneaking away Playboys to read, markedly differentiating themselves from Bombay-street urchins and being, in the words of the protagonist, “reluctant Indians” (Chapter 3). In any case, Brit, conscious of his disability and struggle with sexuality is “not a ‘typical’ Indian child, and his inescapable and very visible suffering, [is] his ticket to premature adult insight” (Hawley 53). Broadly autobiographical, the novel bears several resemblances to the author’s own life, including his Parsi upbringing, early aims of becoming a solicitor and explorations of sexuality. What makes the novel a success is its easy shifting in and out of personal and social reflection about living life on wheels with “high style and comic brio,” (xviii) as Rushdie writes in his introduction to The Vintage Book of Indian Writing (1997), and, as Maria Couto has said, its “unselfconscious detailing of what it is like to be four foot nothing, to move only with the aid of a wheelchair, and to have a soul which yearns and a body bursting with irrepressible sexuality” (257).

In Kanga, the disabled character stands in for the inability of the character to break out of the prescribed norms of medical normalisation and the wish to be “normate”– the “prototypical figure of normalcy [which] is not what we see everywhere but rather what we expect to see” (Garland Thomson 45). Similar characters are found in Rushdie’s Midnight’s Children, which deploys the “extensive use of the body and biopolitics to represent the tensions between difference and homogenization, diversity and regulation” (Barker 127). Saleem Sinai has several bodily differences that grow with the narrative: an unusually shaped face and nose, bandy legs, and eventual loss of hearing. He also loses his memory for a number of years. Clare Barker argues that these augmenting disabilities grow further with “ ‘disabling’ national events” (128). By the end of the story, Saleem folds under societal and familial pressures such that his body is no longer a foundation of a politics of a difference, but becomes a symbol of normalised hegemonic notions of embodiment. Similar observations can be made of other disabled characters across Rushdie’s work, such as in Shame and The Moor’s Last Sigh, or in Rohinton Mistry’s Such a Long Journey and A Fine Balance. A text that reverses some of these suppositions about disabled characters and their symbolic value in serving as foil to discover the nation’s many failings is Indra Sinha’s Animal’s People (2007), a fictionalised take on Bhopal and its disabled community of people. Disability in Sinha’s work is a precondition towards being part of a politically active community for which the disability becomes an impetus for a rights movement. Narrated by the disabled Animal, who has a hunched back and can only walk on all fours, the novel presents a “thanatopolitical imaginary” (Nayar 27) where disability and toxicity form the people’s past, present and future.

Globalised biopolitics forms the premise of Harvest (1997) by Manjula Padamanabhan, a play that traces the lives of Om Prakash, who in exchange of a better standard of life agrees to sell his organs to Interplanta Services, his mother, his syphilis afflicted brother Jeetu, and Jaya, Om’s wife. The family soon undergoes dehumanising treatment from Interplanta, becoming mere objects for the rich recipients’ servitude. Sarah Wasson (2002) places the play in the context of the tissue economies of the Kidneyvakkams or kidney villages in Chennai, known for the rampant illegal organ trade, and the Transplantation of Human Organs & Tissues Act (THOTA) of 1994 that sought to put an end to foreign consumption of organs. One can trace all quandaries of organ trade, as presented in Scheper-Hughes (2005) through four activities in the play: consumption and consent, or conditions that make it ethically permissible to consume parts of the other, coercion, due to familial pressure and commodification or the sale of the fragmented parts of the body. The play ultimately demonstrates the makings of globalisation’s ‘discontents’ (Gilbert 123) in the global south.

Gendered perspectives of medical diagnostic infrastructure can be found in Chitra Banerjee’s “The Ultrasound,” collected in Arranged Marriage (1995), where dominant discourses of visuality are challenged through a diasporic lens. The story begins with Anju, an Indian living with her husband Sunil in America, planning a long-distance phone call to her cousin Runu, who lives in a rural province in India. The cousins are close; when they discover they are pregnant at the same time, they schedule ultrasounds to gauge if the babies are  healthy. While Anju is relieved that her ultrasound shows that her child, a boy, does not carry the genetic diseases she was afraid he would inherit, Runu’s shows that her foetus is a girl. Wanting the first child in the family to be a boy, her family asks her to abort. Anju encourages Runu to run away, a move that Sunil does not approve. The story makes two points: one, it describes a social structure that places reproduction at the centre of it. Secondly, the story describes various discourses about medical imaging that exist within the marginalised worlds of these women – one immigrant, and one, situated within a patriarchal family –that are circulated depending upon the context. Angela Laflen reads (2014, 117-18) the visual discourse within the story as being medical diagnostic, that is, the ultrasounds serve as diagnostic purpose for the couple. Even though this is not spelt out, when Anju contemplates what she would do if her child resembled a mentally disabled relative – “the drooling boy with albino eyes who used to be kept hidden in a small room in the dark and crumbly Calcutta mansion where another aunt lived” (209) – the insinuation is that they would abort the baby. The  diagnoses show the baby’s normalcy and prevents this. For Runu, the patriarchal discourse turns pregnancy into a public act, one where agreements and disagreements arise over what could be a “quality baby.”

The representation of medical infrastructure includes fictional representations of doctors as well. In Cutting for Stone, Abraham Verghese displays an acute understanding of what Charon terms attention in her seminal work on Narrative Medicine (2005) through the character of Dr. Ghosh, who

had an ear for what lay beneath [those] surface words, and a pointed question uncovered a story which matched with one in his repertoire of tales. Then it was time to look for the flesh signs, the bookmarks of the disease, and to palpate and percuss and listen with his stethoscope for clues left behind. He knew how that story ended; the patient only knew the beginning. (152)

Verghese here argues a case for a diagnosis emerging out of life narrative, rather than one emerging from the biomedical data. Attention for Charon is closely linked with witnessing, such that “even before we trigger the cascade of events that culminates in diagnosis and treatment, we bear witness to the patient in his or her plight” (132). And this is not an act specifically linked merely to therapy for mental illnesses: “Whether we treat post-traumatic stress disorder or crescendo angina, we must begin our care by listening to the patient’s account of what has occurred and confirming our reception of the report” (ibid.). Such a description of the character of Dr. Ghosh, with its nuanced attention to ethics, stands in contrast to a non-physician writer describing a patient in IWE, for instance, in the popular R.K.Narayan short story “The Doctor’s Words,” where instead we find the doctor falling back into the mould of the authoritative demigod status, pronouncing a verdict:

when the big man came on the scene it was always a quick decision one way or another. There was no scope or time for any kind of wavering or whitewashing. Long years of practice of this kind had bred in the doctor a certain curt truthfulness; for that very reason his opinion was valued; he was not a mere doctor expressing an opinion but a judge pronouncing a verdict. (17)

The curt manner of the doctor here is a reflection of the lack of a narrative dimension and a lopsided interaction between the doctor and patient. Moving ahead, the story also raises questions about truth and diagnosis and the doctor’s own vulnerabilities and mental health.

Em and the Big Hoom (2012) by Jerry Pinto is the author’s fictionalised recollection of his mother’s mental illness. Known for his poetry, journalism and work on the Hindi film industry, Pinto’s debut novel took to form of a touching and yet light hearted treatment of a family’s experience with the mother’s bipolar disorder. The story of Goan-born Imelda (“Em”), her husband Augustine (“The Big Hoom”) and their children, this first-person narrative explores the various hues of Em’s mental illness through the eyes of a teenage boy, chronicling themes of caregiving and the anxiety of genetic transmission of disease. A Book of Light: When a Loved One Has a Different Mind, Pinto’s later work (2016) stands as testament to the reception his novel received from readers who were moved by Em’s story. Composed of narratives collected from caregivers – taking different forms, including fiction, and often anonymized – the book lacks the novel’s light approach, drawing a dark picture of the uncertainty and emotional turmoil the ill one’s family is put through. Pinto is quick to point out that the book confines itself to the middle-class family and leaves out those who could not find their words in English, unable to include them “without exoticizing them into a colourful spectacle for our consumption” (14). Em and A Book of Light are as similar as they are dissimilar, the narrative distance that fiction concedes to the author informing our perception of an “eccentric and wild” mind (in Em) versus “troubled” minds (in Book).

In a recent collection of short stories called Medical Maladies (2022), with an introduction by the disability theorist David Mitchell, Haris Qadeer brings together a range of stories with medical themes, mostly translated. These stories are removed from western contexts of corporate medicalisation, and, like several of the other stories we have spoken about, come laden with cultural context and perceptions of illness. These range from themes of medical pluralism, which for Qadeer is what distinguishes the stories in the collection, such that they reflect on biomedicine but also on alternative and complementary forms of treatment and healing, including Ayurveda and Unani medicine, to patient care and the gendered medical body. Translated stories compiled include Tagore’s translated “The Gift of Vision,” Premchand’s “Mantra,” Manto’s “Manzoor” and Jeelani Bano’s “A Day in the Labour Room.”

V.I

Children’s Literature

The figure of the disabled or ill child might subvert the notion of an innocent or unknowing child, with their experiences of pain and suffering that children are generally held to be unaware of. Harnessing various semiotic modes, Indian children’s literature about illness/ disability appears to  ask the question, is disability/illness an individual “problem” that needs to be hidden?

In her article surveying the changing themes in Indian children’s literature (2018), Dipavali Debroy highlights three events of note in the country that might be indicative of a changing attitude towards disability: the Factories Act, passed in 1948, which made provisions for industrial injuries, and the introduction of the Jaipur Foot in 1968, a prosthetic leg used instead of the crutch, and the Persons with Disabilities Act in 1995. She lists several works of children’s writing with themes of disability, including Vinita Krishna’s 1999 books, The Talkative Tortoise and The Clever Rabbit and the collection Lighthouse in the Storm with several short stories addressing the issue of disability, such as “Can anyone Do It?” by Deepa Agarwal, Shailaja Nair’s “Halo of Love,” Meera Bhatnagar’s “Feeling Good!,” about crippled children, “The Lyrical Battle” by Ira Saxena, and “Friends” by Manorama Jafa which shows a girl understanding her friend is an HIV patient (Debroy 20).

Meanwhile, a cursory search on Pratham’s Storyweaver platform of the term “illness” and filtered to display results in English shows more than nine hundred books on the theme (which one supposes includes those that merely contain a mention of the term). These “illness” stories include The Novel Coronavirus: We Can Stay Safe, a collaborative book by fifteen well known children’s writers and artists, including Rajiv Eipe, Bijal Vachchrajani, Priya Kuriyan and Lavanya Naidu. These are public health comics for health literacy and aimed at children. They revolve around social distancing, risk communication, washing hands, using masks, and coping with covid-anxiety. This last story, written by Sanjana Kapur and illustrated by Sunaina Coelho is called “Who Returned Bhaiya’s Smile?” and idenitifies covid anxiety as “Dhukdhuk,”a monster. Eipe’s story sees a well-loved character, Ammachi, return, cautioning children to follow only the doctor’s advice.
In the last decade, children’s literature has attempted to approach greyer themes of illness, disability and grief. A selection includes picture books on motor disabilities, such as Wings to Fly (2015) by Sowmya Rajendran and Arun Kaushik; blindness, such as Kanna Panna (2015) by Zai Whitaker and Niloufer Wadia, A Walk with Thambi (2017) by Lavanya Karthik and Proiti Roy, and Machher Jhol (2018) by Richa Jha and Sumanta Dey; and on speech impairments, such as When Adil Speaks Words Dance (2020) by Lavanya Karthik. As is the case with Indian children’s literature about disability, books on visual impairments outnumber those about other disabilities.In Kanna Panna, the revelation of the disability – blindness – only happens after a certain point. Away for vacation with his uncle, aunt and cousins, everyone but Kanna gets frightened inside the dark cave temples. Kanna thinks to himself: “Lights on or off, as if it made any difference to me. My body knew how to get out” (Whitaker) and guides his family out to safety. While it is commendable that the child and not the disability commands the story, it is only when the child can use skills engendered by his disability – here, his skills of navigation – that he grows confident among those who are able bodied. Lavanya Karthik’s story reveals the disability right away, with Thambi always with a white cane and a guide dog. The emphasis here is on the experiences Thambi can enjoy, such as taking in the smells and sounds of a busy bazaar or the feeling of a beautiful breeze. The third book about blindness is similarly suffused with visual detail about the streets and buildings of Calcutta. Richa Jha’s Machher Jhol is a story about a young boy Gopi who sets out to his grandmother’s to get his ill father some much relished fish curry. Both Thambi and Machher Jhol do not use a first-person narrative, a move that gives the reader some narrative distance from the blind protagonist and that does not attempt to appropriate their experience. In fact, in Machher Jhol, when “Gopi hope[s] nobody would notice him” (np), our gaze joins that of the spectators,’ who pointing at him walking alone with his dog, noticing his every move, even as all the descriptions Gopi recalls are through the words of others. Thus, he knows he is 742 steps away from Robi Kaku’s house, knows Durga’s statue is smiling down on him because his father has said so before, and knows to smell the fish before buying it because his father always said so. Machher Jhol joins Kanna Panna in being a book of where the disability is revealed only towards the climax, though there are clues throughout.

When Adil Speaks Words Dance, also by Lavanya Karthik, takes the point of view of a non-disabled person to describe Adil, a deaf boy, as someone who “talks with his fingers . . . listens with his eyes” but who the able-bodied child cannot understand. The book also speaks to those seeking to understand their own ableism and disability. In a metaleptic turn, Adil and the able-bodied narrator find common ground to communicate with each other through their art in a superhero story where they defeat a common enemy. The book ends with two pages about sign language, illustrating common words and phrases, followed by the signage used for alphabet.

The literary framing of disability within these books is significant. Only Adil and Machher Jhol use the words “blind” and “deaf.” While all of these recent books manage to eschew any form of didacticism, choosing not to hide the characters behind their disability, this downplaying of impairment does not address inclusivity in an ableist environment. However, the affirmative language of the books shows that the characters have come to terms with their disability. Adil goes one step ahead and creates allies, a move that shows a non-disabled person’s attempt to understand ableism. While these books do not overtly challenge social biases, they also manage to avoid falling into the category of books that show supercrip characters or those in which disability is a prosthetic device.

 

 

 

VI

The Ageing body and kulturkampf

In her early work on ageing called The Coming of Age, Simone de Beauvoir identifies various tangents explored in representations of old age, including but not confined to the construction of the old as the “Other” (284), ageing as ‘decline’ (17), age as a cultural fact (13), and the role of memory (363). Cultural representations help situate old age as an identity category and help identify structural obstacles that limit a fulfilling life for the old. One of the forms these obstacles take is ageism, a term coined in 1969 to refer to prejudice against the old. At the intersection of gerontology, which is the study of ageing, and literary criticism lies the field of literary gerontology. In “Literary Gerontology Comes of Age,” an essay published in a volume that described the emergence of “humanistic gerontology,” the Handbook of the Humanities and Aging (1992), Anne-Wyatt Brown classifies work in the field as encompassing

(1) analyses of literary attitudes toward aging; (2) humanistic approaches to literature and aging; (3) psychoanalytic explorations of literary works and their authors; (4) applications of gerontological theories about autobiography, life review, and midlife transitions, and (3) psychoanalytically informed studies of the creative process. (332)

Literary Gerontology takes into account textual analyses of literary and cultural representations of ageing and studies ageing itself as a factor contributing to the creative process of writing. Representations of ageing can not only be revealing of perceptions of the aged but can also structure their perceptions of themselves through their exposure to narratives that portray those like themselves, as Margaret Gulette explains: “The meanings of age and aging are conveyed in large part through the moral and psychological implications of the narrative ideas we have been inserting into our heads, starting when we were very young indeed” (2004, 11).

In Medical and Health Humanities scholarship, studies of ageing have concerned themselves primarily with the literary and cultural constructions of Dementia and Alzheimer’s Disease. In Dementia and Literature (2017), for example, the reasons for studying dementia, constructed as a tragedy, the ultimate condition, or as polyphonic and contradictory (Maginess 2) is both to understand the illness as one way of contributing particular insights into the study of the Medical Humanities and to “offer solidarity to people with dementia, family and friends who are caregivers and professional or ‘paid’ caregivers, by honouring their expertise, wisdom, humour and imagination through reminding them or acquainting them with the rich and varied writing of dementia” (ibid.). This important rationale is a rejoinder to not only those that study ageing and/or afflictions associated with old age, but also to those who study narratives of the ill other that one of the field’s major preoccupations is to study and build networks of narrative empathy. In his reading of three works of IWE with aged people suffering from dementia, Anuradha Roy’s The Folded Earth(2012), Ranjit Lal’s Our Nana was a Nutcase (2015) and Pankaj Varma’s Silver Haze (2014), Nayar argues that these representations proffer “the family as the narrative prism” through which dementia is described, less as a medical condition and more as the “failure of cultural protection” and “eroding institutional structures” (148) of the characters. Here as well, the characters are defined by their consciousness of the loss of an authentic self and rendering of themselves into victims (150).

Ira Raja’s work in the field of literary gerontology and IWE is important because she points to the presence of counternarratives that do not just adhere to old age as a prosthetic trope to highlight decline or youth’s normativity. Aside from her critical work, she has also compiled Grey Areas: An Anthology of Indian Fiction on Ageing (2010) in which she has collected stories and poetry that fit into three frames: “The Allegory of Ageing,” on the breakdown on tradition in the face of modernity; “Re-storying Lives,” which focuses on the every day, individual life of the aged; and “Cultural Narratives.” While several of these are translated excerpts and poems, including Dilip Chitre’s Marathi poem “Death of Grandmother,” Manto’s Hindi story on translation, “Khuda Ki Kasam,” O.V. Vijayan’s Malayalam “Going Back” and Girish Karnad’s Kannada (and self-translated) play, Yayati, there are also works of IW in English, such as extracts from Ghosh’s The Shadow Lines, Upamanyu Chatterjee’s The Last Burden and Rohinton Mistry’s Family Matters.

Indian fiction around ageing focuses on memory, death and home, and more prominently on the ‘authentic body’ and the familial self. This is accompanied by a sense, in the words of Lawrence Cohen, of kulturkampf, where western modernity is pitted as the major villain who causes a “threat to the sense of self” (104). The ageing body becomes a site for us to read the convergences and divergences between tradition and modernity and the situatedness of the Indian family system within changing times. However, one may also choose to not just adopt the cultural mode of reading, which can be prohibitive of other modes, such as the affective and semiotic, which would concentrate on corporeality and material culture or care.

Work by popular writers in Indian fiction today has dealt with these themes. For example, in Gita Hariharan’s “The Remains of the Feast” (1993), the 90-year-old Brahmin widow Revathi’s body becomes “agentic” when she decides to give up the religiously followed Brahminical customs of vegetarian eating and decides to go rogue during the end of her life, developing an appetite for food from the nearby bazaar, insisting it has eggs, and slurping down coke even when she physically cannot. The body here rebels not just against the notion of old age indicating the sacrifice of desire but also rebels against imposed restrictions of a spiritual lifestyle and widowhood. A particular scene stands testament to this. When it appears she is about to breathe her last, her great granddaughter-in-law seeks her blessings; the old woman responds by tearing off the tubes from her hand, asking for peanuts and chili bondas dipped in oil. She also asks to be draped in a bright red saree, against the usual norms for widows. With these moves, she overthrows an imposed discourse of what is expected of the aged in terms of passivity, appearance and demeanour, turning the ageing body agentic even at the cusp of death.

The story can be read alongside Anita Desai’s “A Devoted Son.” Rakesh, the son of an ageing vegetable seller, Verma, becomes a successful doctor and in the course of looking after his ailing father, imposes severe dietary restrictions on him. Empowered by Western medical science and filial duty, the son attempts to establish control over the ageing body. A clear binary is drawn in the characterization of the father-son duo: while the son represents biomedicine and western modernism, the father’s ageing body seeks to adhere to Indian traditional norms of ageing.[9]

Collected in the same volume as “Remains,” Hariharan’s “The Art of Dying” brings the focus to the caregiver of the old, a daughter who lost her doctor brother a few years back and is trying to replace him as the object of her dying mother’s affection. The figure of the medical student/doctor/ therapist in Hariharan’s stories returns here (the narrator of Remains is a medical student), as the daughter here is in training to become a counsellor. She brings in an acute consciousness of the ageing, gendered body when she describes her own: “The tenor of my life wifing, childbearing – has been determined by the subtle, undulating waves of progress creeping over my body. Bleed, dry up; expand with life, contract with completion. A peaceful, gentle existence; motion, not quite blunt-edged change” (46). The changing dynamics of caregiving are focalised via the different “objective” roles taken on by the caregiver – a counsellor, doctor, Samaritan, a surgeon, nurse and healer, all “impersonal, detached roles that draw more on the ethics of contractarianism than the model of relationality” (Raja 30). The same vein of thought runs through Shashi Deshpande’s “Lucid Moments” (1993), the story of a childless woman who leaves her job and husband to tend to her dying mother. The story is much more than the caregiver meeting the needs of the ill person, as the narrator is able to establish a meaningful relationship of reciprocity with her dying mother. The story thus subverts the usual limiting maternal model, where one party meets the needs of the other (Raja 2009).

In their introduction to Ageing Masculinities, Alzheimer’s and Dementia Narratives, the authors offer the idea that Alzheimer’s narratives of old age are set in the mould of the “bildungsroman in reverse” (2), recording the unlearning of knowledge and abilities. This might as well be true for several narratives of ageing, as ‘new’ selves are re discovered even as an older body deteriorates.

VII

The Plague as Metaphor: Epidemic/Pandemic Literature

. . . it is the careful examination of language and culture that enables us, as members of intersecting social constellations, to think carefully about ideas in the midst of a crisis: to use our intelligence and critical faculties to consider theoretical problems, develop policy, and articulate long-term social needs even as we acknowledge the urgency of the [AIDS] crisis and try to satisfy its relentless demand for immediate action.

Paula Treichler, How to Have Theory in an Epidemic

The Health Humanities, by examining and understanding disease and healthcare through the lens of the Humanities disciplines introduces a collective response that breaks disciplinary boundaries in the face of a crisis. Humanities scholars can, as Treichler observes in her meticulous reading of literary and cultural responses to the AIDS epidemic, broaden the perspectives of public health personnel. In an article about how the Humanities can be part of the frontline response to the pandemic, Kirsten Ostherr has a line of suggestions, ranging from how Asian American studies can identify and document xenophobia, creative writers can trace an imaginative path as way of a pandemic response – a “science fiction prototyping,” to how literary scholars can identify narratives creating misinformation and advice health communicators create counternarratives (Ostherr 2020). Identifying patterns and themes across literary representations of epidemics and contextualising them using their depictions of cultural and national borders to extrapolate these patterns thus serve as primary steps in a Medical Humanities approach to the pandemic. Priscilla Wald’s model of the “outbreak” narrative as a distinct generic form serves as a handy research method to reading such representations. Wald proposes that such a narrative “follows a formulaic plot that begins with the identification of an emerging infection, includes discussion of the global networks throughout which it travels, and chronicles the epidemiological work that ends with its containment” (2).  The discussion of these networks in much of IWE on pandemics (from pan, across and demos, people) centres around the social and political life of the people living through it. This porosity of biological and national borders is at the front of Indian literature on epidemics. In his essay, “Epidemic Narrative: Two Paradigms,” Dilip Das neatly reads the representational structures of pandemic narratives as either belonging to the biomedical- realist mode, which attributes the epidemic to natural causes, or the cosmological-mythic mode, which reads the cause of the epidemic as the doing of deities and spirits. An example of this is the story of Sitala, transcribed by Susan Wadley, a deity who protects people from small pox in return for ritualistic practices (Das 18-20).

In the last two years, works in literary criticism have attempted to compile and critically read narratives from the global south in the light of the pandemic. Among them are Pandemics and Epidemics in Cultural Representation (2022), edited by Sathyaraj Venkatesan, Antara Chatterjee, A. David Lewis, and Brian Callender, Contagion Narratives (2023) edited by Sreejith Varma and Ajanta Sircar, and Nishi Pulugartha’s edited volume, Literary Representations of Pandemics, Epidemics and Pestilence (2023). Several of the works studied in these volumes have been written in languages other than English, but they deserve a passing mention (several have been translated too). These include Tagore’s Chaturanga (1915), which shows the chaos of the plague in Calcutta, while Suryakant Tripathi Nirala’s Hindi memoir, Kulli Bhat (1938) (translated in 2016 as A Life Misspent) contains brief mentions of the 1917 influenza, with descriptions of the times when the poet sits by the Ganga, looking at the line of corpses floating down the river, having lost several members of his family to the disease.

An early work of IWE set in Delhi and covering this epidemic is Ahmed Ali’s Twilight in Delhi (1918), India’s first Indo-Muslim novel published by Hogarth Press in London. Touted as a “national biography” that challenged a “normative and singular teleology of a nation” and traced a story of one culture’s extinction in the wake of a rapidly modernizing Urdu tradition (Padamsee 29), Twilight finds a mention here for this theme and ethnographic language of extinction that spoke also about the death and decay that followed the Bombay Fever,[10] a flu that spread through the country as soldiers returned with it after the end of the First World War in 1918. The Spanish Flu killed around 15 million people in India. In a story set between 1911 and 1919 that revolves around the Nihal family, when the rich patriarch Mir Nihal’s son, Ashgar loses his wife Bilqueece to the fever.  Ali paints a picture of devastation that depicts the politics of death, mourning and the vulnerability of the dying poor:

How deadly this fever is/ Everyone is dying of it/ Men become lame with it/

And go out in dolis/ The hospitals are gay and bright/But sorry is men’s plight. (170)

And later,

A new cemetery was made outside the city where people buried relations by the score. The Hindus were lucky that way. They just went to the bank of the sacred Jamuna, cremated the dead, and threw away without a shroud or cremation. They were mostly the poor. Yet in death it was immaterial whether you were naked or clothed or burnt or thrown away to be devoured by vultures and jackals. (169)

Sumantra Baral calls Twilight a narrative of suffering and risk (147), one that concentrates on people’s responses to an epidemic and their construction of a condition of risk when the danger was out there, rather than focusing on the medical intervention in place by the government or hospitals of the time. It is an understandable exclusion since bacteriology was a few years away and people recognized natural disasters as “punishment” and prayer and worship as reparation.

The intervention of doctors and other kinds of nonmedical workers forms the crux of the short story, “Quarantine” by Rajinder Singh Bedi, first published in Urdu in 1939 and recently collected in the Medical Maladies. The story highlights the intersection of social stigma and quarantine through two characters, both frontline workers: one is a privileged doctor, the narrator, who is rewarded for his tireless work during the outbreak. The second is a sweeper, Bhagoo, who helps those afflicted with the disease, buries the dead and helps the doctor but sees neither social mobility nor acknowledgment.

A more focused concern with social stratification and its effects on the experience of a pandemic forms a major theme of U.R. Anantamurty’s Samskaara, written in Kannada and translated by A.K. Ramanujan into English in 1976. Revolving around the story of a rebellious Brahmin man who dies during an epidemic such that nobody else in his Agrahara can eat until his body is cremated, Samskaara is also set on the cosmological-mythic paradigm, attributing the pandemic to the wrath of the Gods. A biomedical counterpoint is set in place by the character Manjayya, who thinks of steps such as vaccinations and informing the municipality, in contrast with the Brahmins who are concerned with rites as appeasement. For Gaana Jayagopalan, the story juxtaposes the caste-body, body-in disease, and body-in-death, expanding these textual geographies (137). Other pandemic stories, such as Fakir Mohan’s “Rebati,” (1898) written originally in Odia and Master Bhagwan Das’s “The Plague-Witch,” (1902) also work along these paradigms.

Visual narratives formed an important part of the response to COVID-19. Partha Bhattacharjee and Priyanka Tripathi study five Indian Comics that emerged after COVID-19  in their article in the Journal of Visual Medicine (2022) to show “how Indian comics on COVID-19 can be an advantageous communicative medium to nurture knowledge and edutainment in post-infection India” (205). These comics include Nagaraj Strikes: The Attack of Coronaman (2020), which brings back Raj comics’ herculean Nagraj to battle the dangerous Coronaman; the Ministry of Health Affairs’s Kids, Vaayu and Corona, Who Wins the Fight? a comic which employs, Vaayu a superhero to explain the coronavirus precautions to children, Argha Manna’s Be Aware of Droplets & Bubbles, a comic explaining the science of spit bubbles published in the Annals of Internal Medicine and Ram Devineni’s Priya’s Mask, which uses the same character as the popular Priya’s Shakti,[11] a comic about gender based violence. Interestingly, most of the comics here also employ a mythic approach in the characterization, though it is not causation but the eradication of corona that is carried out by a superhero through logical actions pertaining to a real world, such as social distancing, wearing masks, kindness and compassion.

In “Pandemic as Portal,” Arundhati Roy highlights how “[h]istorically, pandemics have forced humans to break with the past and imagine their world anew. This one is no different. It is a portal, a gateway between one world and the next.” Literary representations engender such a comparison between an imaginary world and ours, such that they become a portal in themselves, foregrounding those narrative arcs that describe the pandemic through medical or social lenses, but also containing in them and encouraging us to incorporate a critical consciousness in responding to the pandemic.

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Notes

[1]A GMER circular released in June 2023 (the previous revision was made in 2018) lists teaching elements/components in the preclinical stage that include “early clinical exposure”, the final objective under which is to “understand the socio-cultural context of disease through the study of humanities” (36) and “To introduce learners to a broader understanding of the socio-economic framework and cultural context within which health is delivered through the study of humanities and social sciences.” (37). A few days after its release, another circular rendering the regulations “withdrawn and cancelled” was released by the NMC, possibly to amend some of the rules.

[2] Refer to an extract from Gene published in The New Yorker, titled “Same but Different” (https://www.newyorker.com/magazine/2016/05/02/breakthroughs-in-epigenetics ) and the ensuing debates it began, documented, among other places, in https://whyevolutionistrue.com/2016/05/05/the-new-yorker-screws-up-big-time-with-science-researchers-criticize-the-mukherjee-piece-on-epigenetics/

[3] The often-philosophical tangents and literary quality that Mukherjee and Gawande’s works inhabit are not without successors, even if these have not been physicians. For example, Bharat Venkat’s At the Limits of Cure (2021) proves to be as literary as Mukherjee’s work, if more linear, and his objective is not merely to trace a history of Tuberculosis treatment in India but try and define for us what “cure” itself could mean.

[4] Poetry in IWE has often had illness as a theme. From Kamala Das’s works on death and dying and Dilip Chitre on old age to “Illness in Installments” by Sumana Roy on Ulcers and Surgery, medical themes abound in Indian poetry.

[5] The Women’s Medical College of Pennsylvania, now Drexel University College of Medicine, also lists various memorabilia belonging to Anandabai Joshi, including her correspondence when she was part of the university. The SAADA (South Asian American Digital Archive) website houses some correspondence and pictures, including her headstone, which reads “First Brahmin Woman to leave India to obtain an education.” (https://www.saada.org/item/20120720-788 )

[6] The nobody memoirs in IWE also seem to be endorsed by somebodies: for instance, Neelam Kumar’s memoir (and its graphic adaptation) have been endorsed by Amitabh Bachchan and Manisha Koirala; Ananya Mukherjee’s The Tale End of Life has a note by Yuvraj Singh, another celebrity cancer memoirist. For these nobody memoirs, paratextual apparatuses also contribute to formation of a biosociality which has its basis in literary care.

[7] Subsequently, Lata Mani has explored different media forms to represent the fragility of the body in symbiosis with the fragility of the natural world in a “videocontemplation” she calls The Poetics of Fragility, shot together with filmmaker Nicholas Grandi.

[8] Perhaps the earliest physician-author persona popular in IWE is Rudyard Kipling, whose interest in medicine and in the diseases he encountered in the Indian subcontinent makes itself apparent through medical themes and mentions of tropical diseases strewn across his work. In Kim (1909), there are occasions where traditional medicine is compared to western medicine. Besides characters such as Hurree Babu peddling western tablets, the titular character also makes use of quinine and opium, and acts as a healer of sorts. The Indian born English doctor’s shorter fiction, including stories such as “Thrown Away,” “By Word of Mouth,”  “Only a Subaltern,” ”The Strange Ride of Morrowbie Jukes,” and  ”The Bridge Builders,” deserves a mention here for its representation of imperial medicine, conceptions of diagnosis and cure and how these ideas tied up with “knowing” the country . In his work on famine, disease and the Victorian Empire (2013), Upamanyu Pablo Mukherjee argues that cholera, the “archetypical Indian disease,” serves a decisive material role in “revisualizing the material realities of Empire” and marking the failure of narratives of what he constructs as “palliative imperialism” – an act of care that the British undertook to “rescue” the native from the precarities of their own land (19-21). In these stories, Priscilla Wald’s outbreak narrative is reduced to an “epidemiology of belonging” (pp) which reduces the essence of India to disease.

[9] The centrality of food in narratives of ageing is noteworthy and can be read in Jeet Thayil’s poem, “The Other thing”(2003, p. 51): “At the end, she found/ her way to glory: she said/ water was too sweet,/chocolate too spicy, it brought/ tears to her eyes, nothing was right,/not salt, not bread, nothing/helped, so she stopped food. She/stopped.”

[10] It was called the Bombay fever in India since the city served as the transactional port between the country and Europe during the First World War.

[11] However, Priya’s Shakti has been criticised for “render[ing] Priya as marginal within her own story” by instead fronting Ram Devineni as the real agent of change across media (Vemuri and Krishnamurthi 2022) and for essentialising the Indian woman and hence “reenact[ing] certain violent historical erasures along the lines of caste, sexuality, class, and religion” (Pande and Nadkarni 2016).

Copyedited by Sreelakshmy M.