An Autoethnographic Reflection of COVID-19 and/as Biographical Disruption

Abstract

The COVID-19 pandemic and concomitant measures to mitigate it have exacerbated pre-existing social inequalities and have proven to be major disruptive phenomena at both individual and community levels. People with disabilities and chronic illnesses have been some of the most drastically impacted social groups during the pandemic whose isolation and vulnerabilities have often been compounded in the wake of the massive social upheaval. Through an autoethnographic account of a woman with a physical disability in India who has also survived polio, heart disease, cancer and COVID-19, this article captures some of the complex and conflicting emotions and experiences of a life lived at the intersections of various embodied precarities and demonstrates how a social disaster can itself constitute a biographical disruption.

Introduction

The COVID-19 pandemic that swept across the world in early 2020 has been considered to be as much of a social and human disaster as a natural and biological one (Kelly, 2021). While the effects of the pandemic were felt across social institutions and populations, the pandemic and concomitant measures to mitigate its effects have amplified pre-existing social inequalities and have rendered the lives of marginalised populations increasingly precarious (Armitage & Nellums, 2020; Chanda & Sekher, 2020). People with disabilities are one such social group who have been disproportionately affected by the pandemic. The routine lives of people with disabilities were severely disrupted owing to their isolation within their homes, often confined within hostile domestic environments, disruptions in education and livelihoods, loss of access to systems of support such as carers, housekeepers, therapists, counsellors, partners and others, limited access to healthcare services that were not considered to be ‘essential’ or related to COVID, increased stress for fears of contracting the virus and the risks posed by comorbidities, and exclusions from COVID relief programmes and COVID-related messaging and communications (Armitage & Nellums, 2020; Rising Flame & Sightsavers, 2020; Sekher & Chanda, 2020). These vulnerabilities are particularly pronounced in low- and medium-income countries such as India with extremely inadequate social support systems (Sekher & Chanda, 2020).

While these forms of precariousness certainly merit critical engagement and should inform all policy and programme initiatives for people with disabilities globally, it is essential to be wary of overemphasising vulnerability at the cost of resilience and the nuances of lived experiences. This overemphasis risks portraying people with disabilities as helpless victims of the pandemic and foregrounds their dependence while neglecting their resilience. Drawing on the words of author Chimamanda Ngozi Adichie, it is essential to tell multiple stories of disabled experiences of the pandemic and to stay cautious of ‘the danger of a single story’ which ‘robs people of dignity. It makes our recognition of our equal humanity difficult’ (Adichie, 2009). Drawing on Adichie’s observation, to write only a story of the loss of people with disabilities during the pandemic is a disservice to their right to self-determination. Hence, foregrounding the voices and lived experiences of people with disabilities is essential for these multiple stories to emerge in the public sphere. The present study is an effort in this direction that aims to capture the complexities of the lived realities of a woman in India with a disability who has survived cancer, heart disease and COVID, and to foreground the subtle ways in which agency and vulnerability blend into each other.

When analysing the global impact of COVID-19, ‘disruption’ is one of the most characteristic terms used to describe it. In the context of disability and illness experiences, the most relevant form that this disruption assumes is of ‘biographical disruption’ (Bury, 1982). Medical sociologist Mike Bury conceptualises biographical disruption as a characteristic feature of chronic illness. Bury makes the following assumption about the disruptive effects of chronic illness:

…illness, and especially chronic illness, is precisely that kind of experience where the structures of everyday life and the forms of knowledge which underpin them are disrupted. Chronic illness involves a recognition of the worlds of pain and suffering, possibly even of death, which are normally only seen as distant possibilities or the plight of others. In addition, it brings individuals, their families, and wider social networks face to face with the character of their relationships in stark form, disrupting normal rules of reciprocity and mutual support. The growing dependency involved in chronic illness is a major issue here. (Bury, 1982, p. 169)

Bury’s conception of biographical disruption brought about by chronic illness is seminal in disability studies, particularly in terms of its significance for studies on personal narratives of disability and illness. Several scholars have also critiqued and revised the concept in relation to the diverse possibilities posed by illness and disability. Engman (2019), for instance, observes that biographical disruption ensues not only from the onset of illness per se but also from ‘the ability to enact an embodied orientation towards the world’ (p. 120). To elaborate, Engman believes that it is the shifts in one’s ability to physically engage with the world that causes the disruption rather than the illness per se. ¹ Bell et al. (2016) and Sanderson et al. (2011) observe that while illnesses and disabilities cause disruptions in people’s biographies, normalisation is an integral component of the experience too since people attempt to integrate the disruption into their new sense of self. Dreger (2004) and Williams (2000) emphasise the importance of time in the disability and illness experience when they observe that those who experience illnesses and disabilities at an early age often do not perceive the experience as being a disruption and integrate the experience into a continuous and coherent sense of self. Williams (2000) further observes that disabilities and illnesses that set in during old age constitute less of a disruption than early onset ones since older people are better prepared for unexpected health conditions at this age. Larsson and Grassman (2012) dispute several of the propositions placed forth by Bury, Dreger and Williams. They observe that as opposed to the assumption that the illness or the disability constitutes a single disruptive event in a person’s life, people with disabilities and chronic illnesses often experience disruptions throughout their lives, some of which are expected and others not. They refute the claim that disabilities and illnesses that set in early in life or during old age are less disruptive than those that set in during the middle years and emphasise the conflict, stress and unexpectedness that could accompany their onset even during these time periods, as well. Larsson and Grassman (2012) also observe that people with illnesses and disabilities might experience fears of new complications and even new ailments setting in over the course of their lives, fearing increasing dependence, risks to their livelihood and perceived threats to their social image. Simult- aneously, previous experiences of illness and disability might improve people’s confidence about their ability to handle challenges to their health in the future. Therefore, in consonance with the dynamism and uncertainties of embodiment, there can be no single story of a biographical disruption and the concept assumes multiple forms and varying significance in accordance with the specificities of diverse embodiments and personal experiences.

Nevertheless, existing scholarship on the concept of biographical disruption has multiple limitations, two of which are of specific relevance to the present study. First, there is limited attention to the experiences of people with more than one disability or illness and their differential attitudes and experiences towards these multiplicities of embodied precarities. Second, existing scholarship, although some of it acknowledges the impact of structural factors such as age and gender on the illness/disability experience, tends to revolve around individual embodiments and does not pay sufficient attention to external ‘critical situations’, to borrow Giddens’ (1979) term, that could take on the form of biographical disruptions. The present article attempts to address these two gaps.

The article focuses on an autoethnographic study of a woman in India who has a physical disability and who has also survived heart disease, cancer and COVID-19. The study reflects on her experiences with these multiple embodied precarities at different stages of her life, the differential significance she attributes to each of these experiences and the ways in which these experiences have shaped her identity as a scholar of psychology and disability studies. The study reveals the indispensability of ‘impairment effects’ in conceptualising biographical disruption. Impairment effects refer to the restrictions that people with disabilities and illnesses experience that result directly from the illness and the disability itself (Thomas, 1999). The study also foregrounds Engman’s observation that there can be no single aprioristic conception of biographical disruption outside of the specificities of embodiments, and it substantiates Larsson and Grassman’s argument that disability and illness can cause distress and disruptions even when they set in during childhood and old age, and that people with disabilities and illnesses experience various disruptions throughout their life even if the onset of every unexpected ailment is sometimes met with greater confidence since the person believes that they have survived immense hardships in the past and can continue to survive the same in the future. Moreover, the analysis also reveals that the person with the illness or disability potentially also builds up a support group over their lifetime and accumulates social and cultural capital, which could possibly enhance their ability to cope with various unexpected contingencies over their lifetime.

The autoethnographic analysis also reveals that external circumstances such as the COVID-19 pandemic and the associated lockdown measures adopted by governments worldwide to mitigate its spread are constitutive of biographical disruptions rather than merely the external contexts which contribute to these disruptions. Bury (1982) considers a biographical disruption to be a kind of ‘critical situation’ as conceptualised by the sociologist Anthony Giddens. Giddens defines a critical situation as ‘a set of circumstances which—for whatever reason—radically disrupt accustomed routines of daily life’ (1979, p. 124). A critical situation could arguably include embodied experiences such as illness and disability although it appears to more aptly refer to external situations that affect individual lives while biographical disruption more closely refers to the embodied uncertainties such as illness and disability. The COVID-19 pandemic blurred the distinction between external and internal—social and embodied—vulnerabilities in significant ways. Fears of morbidity, comorbidity and mortality blended with angst of loss of livelihood, being separated from loved ones, limited access to healthcare and the uncertainties stemming from the economy and political system. Therefore, it becomes impossible to consider COVID-19 to be a biographical disruption in itself with a range of entailments, both social and embodied. Nevertheless, to attribute to the pandemic the status of a biographical disruption does not imply that all populations were uniformly affected. Instead, it serves as an imperative to explore the multiple and varied effects that the pandemic had on various populations. In the context of people with illnesses and disabilities, the pandemic was yet another significant biographical event that augmented their embodied precarity while posing for them, new challenges and demands that they had hitherto not experienced. The objective of the present article is to foreground both the need to examine the impairment effects of specific illnesses and disabilities while recognising the imperative for external circumstances and embodied experiences to be coalesced in an analysis of biographical disruptions.

Methodology

The article uses a collaborative autoethnographic approach to analyse the biographical disruptions at the intersections of disability, multiple illnesses and the COVID-19 pandemic. Autoethnography could be conceptualised as ‘the use of personal experience to examine and/or critique cultural experience’ (Jones et al., 2016, p. 22). Ellis (2016) emphasises the rigour entailed in autoethnographic analysis by stating that

…autoethnography is not simply a way of knowing about the world; it has become a way of being in the world, one that requires living consciously, emotionally, and reflexively. It asks that we not only examine our lives but also consider how and why we think, act, and feel as we do. Autoethnography requires that we observe ourselves observing, that we interrogate what we think and believe, and that we challenge our own assumptions, asking over and over if we have penetrated as many layers of our own defenses, fears, and insecurities (p. 10).

Therefore, autoethnography is not a passive act of recounting one’s experiences but also entails critical self-reflection and using one’s own narrative to present an analysis of one’s social and cultural milieu. When discussing the dangers of a single story, Adichie (2009) emphasises that the most effective way to assume control over someone else’s story and to present it as one’s own is by telling their story. Autoethnography is one of the most effective safeguards against this form of usurping of narrative authority while simultaneously leveraging the personal narrative to present a broader social and cultural critique.

The present autoethnographic study is also an instance of a combination of emotive and interpretive writing (Chang, 2016), which provides detailed descriptions of personal experiences to evoke emotional responses from the reader while also involving theoretical and conceptual scholarship to analyse the experiences shared and to foreground the ways in which impairment effects are shaped by the pandemic, as well as to discuss COVID-19 itself as a kind of biographical disruption.

A unique approach of this article is the use of collaborative reflection in the conceptualisation of the autoethnography. Far from undermining the agency of the primary writer, which would have been a travesty of the fundamental premises of the autoethnographical method and of the narration of one’s own story in one’s own words, collaborative reflection illustrates the heuristics through which a co-reflector can be introduced as a participant in the reflection process to co-conceive new analytical insights into the personal narrative.

Limitations

A limitation of the autoethnographic method is its restricted potential for capturing social trends and for producing a representational snapshot of a specific social phenomenon, which could be better captured through quantitative methods. But autoethnography enables a more nuanced and in-depth analysis of a specific person that potentially reveals insights that might not otherwise be available through quantitative studies. As Jones et al. (2016) observe about the limitation of quantitative methods, ‘What quantitative research is less adept at is accounting for or describing the particular, the micro, and the situated elements of our lives’ (p. 26). They further observe that much of the dynamism and messiness of human existence can be represented more aptly through qualitative research methods of which autoethnography is a part. Therefore, although the present study does not claim to provide broad representations of the lived realities of biographical disruptions during the pandemic, it provides deep insights into a specific modality of biographical disruption through which the effects of the pandemic and the very concept of a biographical disruption can be better captured.

Experiences with COVID-19

In this section, I elaborate my experiences with COVID-19 with the aspiration that being reflexive about one’s illnesses can be a valuable healing tool for fellow disabled and academicians alike. My experience is inscribed from the perspective of a disability studies scholar with a feminist leaning and psychological training. Therefore, I am not merely a person with a disability but an academician as well with a scholarly interest in feminism and disability studies.

Like many other countries across the world, India endorsed a day-long nationwide lockdown on 22nd March 2020. The university where I teach had already been shut down since 13th March. In a way, the closure of the university made me feel relieved and, since my caretaker continued to visit me regularly, my life had not changed drastically. But on 24th March 2020, the Prime Minister announced a nationwide lockdown which, he said, would go on for three weeks and would end on 14th April. The sudden announcement led to widespread panic. After the 24th, my caretaker stopped coming as she required a curfew pass during the lockdown. On inquiring, I came to know that no provisions had been made for issuing passes for caretakers of the disabled. The Disability Commission’s assistant’s reply was that I could request the caretaker to stay with me at home but, having a family of her own, the caretaker was not willing to do so. This was just the beginning of a series of drastic changes in my life. As a wheelchair user, I am dependent on my caretaker for cooking, cleaning and washing. Her absence left a major void in my life. While I managed to get some housework done such as sweeping the house, and my family who lives in the house opposite to mine ensured that I never went hungry, there were some tasks such as spreading a bedsheet that remained extremely difficult for me. Moreover, the sudden loss of a person who was so integral to my daily life left me feeling helpless and made me realise that my independence was an illusion. I was not alone in my feelings of despair: all over the country, persons with disabilities were facing problems in accessing essential medical services, equipment/aids such as regular therapeutic services, catheters, urine bags, diapers, among other things, and personal assistance.

I wrote a letter to the State Commissioner for Persons with Disabilities (PwD) (Delhi), Ramesh Negi, outlining the challenges faced by me as well as by other persons with disabilities in India. On 1st April, Mr Negi issued a directive to ensure access to essential services such as food and medicines to persons with disabilities. It was also stated that carers of persons with disabilities would be given curfew passes easily in order to allow them to reach disabled people. After this, my caretaker started to visit me every alternate day and my family helped me out with food on the days when she did not come. A few days after the total lockdown, I began to conduct my university classes online. This was another entirely new experience for me and immediately changed the equation between my students and me. Just as with not having my caretaker around every day, I had to adjust to not being physically present in the classroom, addressing the new challenges posed by technology and internet connectivity issues, as well as developing new forms of bonds with my students. This was a time of great uncertainty, precarity and vulnerability. Even though I was virtually connected, there was a sense of a void shaped by being physically separated from the people I was accustomed to engaging with on a regular basis. By July 2020, as the first wave of the pandemic began to ebb in India, life crawled back to what came to be referred to as a ‘new normal’, with the restoration of public transport, stores opening up and public mobility being restored. Little did I imagine that the worst was yet to come.

In April 2021, India was gripped in a deadly second wave of the pandemic that claimed thousands of lives. During this time, our university classes remained suspended but we were expected to attend a few meetings. One day, my personal assistant called me up saying that she had a high fever. Somehow, I knew that I would not be able to escape the virus so I took the RTPCR test. A day later, I got the report. It was positive. As soon as I saw the report apprehensions of ICUs and ventilators increased my palpitations, my imagination fed by television images of the lack of available hospital beds, the paucity of oxygen cylinders, and dead bodies in Ganges river. Having experienced the lockdown had been problematic but now I had to be locked in my room without any human connection. My niece who is a doctor and is familiar with my comorbidities gave me medication and a fingertip oximeter. I was extremely grateful that my family managed to rent an oxygen cylinder during a time when this essential object was in extremely short supply.

This was the first time when my mother’s hands were not there to touch me when I needed them. All my life, through endless trysts with doctors due to polio, two open heart surgeries, a stroke, uncountable fractures and finally breast cancer, my parents but primarily my mother had always proffered a comforting touch. Through rounds of chemotherapy, it was she who found ways to give me relief from nausea and, in innumerable hospital rooms when I felt irritated and annoyed or in pain and helpless, it was her hand I would grab for reassurance. During this period of being COVID-positive, I had to tell her to go back home. For those 17 days when I had to rely on phone calls with her which provided a small sense of comfort, I never lost the hope that the door would open and my mother would walk in. One her side too, my mother had to struggle to find a way to be with me. Because she could not come to my room she forged a connection by making sure that I ate my medicines and looked after the preparation of my food. It was clear that that she could not have done anything beyond this. I had hoped to be able to get a virtual hug from her, but since she is not technologically acculturated it was not possible to see her face on the computer screen via a Zoom or Google call.

Another consequence of the isolation of this time was that I was unable to receive physiotherapy which, as a polio patient, I required to maintain the strength of my muscles. As a result the weakness and fatigue only got worse.

While my mother remained my primary carer, my extended family also helped to look after me. Moreover, because my main circle of friends comprises other women most of whom are feminists such as myself, the pandemic reinforced for me the need for maternal carers such as my mother and my caretaker much more than ever before.

My channels of communication changed significantly once I was diagnosed with COVID since everything became virtual and no one was able to interact directly with me. One of my friends wanted to send me flowers but could not do so because no one was willing to deliver flowers to a person whom they knew was COVID-positive. So my well- wishers could only communicate with me through social media and text messaging. A lot of thought also had to be put into the vessels in which food was given to me. We tried using disposable plastic plates and cups but people were too scared to dispose of the garbage. So, we decided to use regular utensils which I would then wash. It was not the perfect solution but it was what worked best under the circumstances.

One day, a close friend who had also got a positive diagnosis required an oxygen cylinder. I was faced with the terrible decision of whether to send her my own oxygen cylinder or to keep it for myself in case I experienced an emergency. After what happened next, I was quite relieved that I kept the cylinder for myself. One night my oxygen level dropped to 89 and I became hysterical. It was midnight and my brother had to call a doctor. The doctor was also petrified of examining a person who was COVID-positive and checked me very superficially. I was only reassured when I found out that the hospital, which is in my lane, would admit me if my condition deteriorated any further. While all this was going on, I was desperately trying to get a cylinder for my friend. Although I did not need my own cylinder as yet, I was too afraid to part with it. It was only on the third day when my level remained stable that I was confident to send the cylinder to my friend.

In this state of chaos and ambivalence, I oscillated between an infant-like state of extreme dependence and a steward-like state of having to think about the lives of others even when my own life was under threat. I believe that this has been a common experience of the pandemic that transcends geographical boundaries. An event that began as a temporary disruption has become a historical milestone that has forced many of us to adapt to adversity and uncertainty in an unprecedented manner.

Relating to one’s possible nonbeing is something most people tend to push away: death only happens to others. However, when hit by serious illness, they are often more clearly confronted with existential issues of death, freedom, loneliness, and the question of meaning, something which is also reported in research of patients with a variety of illnesses. I too was trying to push away thoughts about illness and its possible consequences for a while. Although I had no major symptoms except for fatigue and breathlessness there were moments when I would lose my confidence and control of my body.

After being diagnosed with COVID-19, life’s existential questions suddenly became very present.

Although these ‘why me’ questions were by no means new to me, the absurdity of this question was compounded by the mass deaths of people globally. I was nowhere remotely close to suffering alone. I was struck with the feeling that tomorrow I would wake up and find that it is all just a dream, so hard was it to believe that this was really happening. Facing the reality of one’s own impermanence and a heightened sense of the seriousness of the situation and the threat it posed made it hard to watch the news and the constant headlines running across the screen quoting the rising numbers of dead people in Delhi. I became acutely aware of how life could not be taken for granted: death as a condition of life was transformed from being something abstract that concerned others to becoming something intensely real, concrete and immediately relevant.

In this way, I came to see how it is possible to understand COVID-19 as an illness that affects the whole person, not just as a virus with objective symptoms or dysfunctions, but rather as a condition that carries a complex relationship between meaning, body and the situation in which I was able to perceive my precarity in a unique manner. While I have now recovered from COVID, even today the effects of long COVID continue to haunt me: I feel much sleepier and find it much harder to stay awake than I used to. The idea of a disease coming to an end and the very concept of recovery have thus been challenged by the lingering effects of COVID. As a person with a disability, I have long been acutely aware of the severely ableist attitudes prevalent in the healthcare sector in India and their detrimental effects on the ability of people with disabilities to access healthcare facilities. The pandemic has exacerbated these inequalities as well as uncovered the myriad challenges faced by people with disabilities on a routine basis. Whether the universal vulnerability created by the COVID pandemic will have a positive bearing on the healthcare system in India remains to be seen.

Reflecting on the disruptions that the pandemic have had on my life, I believe that the pandemic itself and my own experiences of being infected with COVID certainly constitute biographical disruptions but of a very different nature than those conceptualised by Bury (1982). This is predominantly because the disruptions that I faced did not emerge directly from the illness experience per se but from the hostile contexts generated by the pandemic. As Engman (2019) observes, it is one’s embodied ability to interact with the world that constitutes the disruption rather than the illness per se. This is a highly relevant typification of my own illness experience with COVID as it was not the difficulty breathing or the fatigue that were of primary concern to me or which had the most disruptive effects on my life. Rather, it was the multifarious features and effects of the pandemic itself, including the mass deaths around me and globally, failing healthcare systems, shortages of essential medical supplies and the massive disruptions of everyday life that were so disruptive. My experiences with the effects of both COVID and the associated lockdowns also reveal the importance of interpersonal relationships in defining the form and heuristics of the biographical disruption. The kinds of support systems that one is accustomed to and the new forms of relationalities that are constituted during times of uncertainties have a strong bearing on the ways in which we experience the kinds of disruptions that illnesses and disabilities have on our lives.

Unlike what Bell et al. (2016) and Sanderson et al. (2011) observe, it is too soon to speak about the normalisation effects of COVID-19. The pandemic has not really ended and the newness of the illness makes it difficult to conceptualise a clear model of what recovery could be. Moreover, there can be no conceptual model of recovery from COVID without considerations of intersectionalities in terms of caste, class, ethnicity, geographical location and the specificities of various comorbidities in the trajectory of the illness. Hence, the very concept of a biographical disruption is a complex socio-biological phenomenon, the phenomenology of which cannot be explained in purely medical terms. It is also very difficult to claim that normalisation is an integral part of a biographical disruption since this possibility is highly contingent on the specificities of the illness and its effects.

While my trysts with COVID have been the latest additions to my illness experiences, my responses to it have been strongly inflected by previous experiences with polio, heart disease, cancer and multiple fractures. In the following section, I would like to explore how my experiences with all these other bodily precarities differ from and intersect with my experiences with COVID.

Learning from Previous Illness Experiences

I was diagnosed with polio at the age of two and have always thought of polio as a ‘biographical flow’ (Faircloth et al., 2004). Not walking is normal to me: I do not spend my life mourning my inability to walk; most days I do not even think about it. To analyse the impact of not walking on my life would require me to imagine myself living in a parallel universe of mobility. I would have to compare events in the life I have actually led to events in a life I can only imagine.

During my growing years (and often now as well), my family and I spent an unwarranted amount of time attempting to find a cure for the ‘disease’ of polio. While I was not left out of familial interactions, the discourse within the family as well with relatives and friends was of curing the ‘poor girl’. Recurrent questions that have always been posed to me are ‘How come you had polio? Were you not vaccinated? Why was your mother not more careful?’ These questions continue to haunt me as my polio has had a significant impact on my mother’s notion of parenthood, too. As my mother once told me,

When I came to know that she (referring to me) had polio, I was no more like other mothers. I was almost an outcast. When the other mothers talked of their daughters’ dance performances, I could never imagine that, as my daughter wore calipers, a back belt and crutches, could ever dance. All I did was to make her recite poems and read as much as she could.

But while acknowledging the struggles of having polio, my family also learnt to resist the stigma that came to be attached to it. Polio became a part of their narrative as much as it was mine and while my mother remained my primary carer, she received immense support from my extended family, particularly both my grandmothers. In this way, polio for me has been more in the nature of a biographical continuity than a disruption since it is the only life that I have ever known. It has prepared me in many ways for several of the uncertainties that occurred later in life and helped me develop a support system and coping mechanisms that helped me through the difficult times that were to come in the future.

In November 1968, I developed a fever and an acute throat infection from which I did not recover. I complained about palpitations and a heart specialist subsequently diagnosed my symptoms as indicative of rheumatic heart disease. After hospitalisation, I felt as if I’d entered a parallel world away from school and movies. I started living with frequent ECGs and went ahead with my life, ignoring small but significant danger signs. In 1980, my heart decided to give a different signal which, at the time, I dismissed thinking that it may have been due to a change in medication that my heart was now beating at 140 beats per minute. But I still needed to be tested and an ECHO and a barium chest X-ray had to be taken. My mother’s worry was telling me that it was going to be something serious. I waited for my father with the hope that the reports would be satisfactory, but the defenselessness on his face suggested otherwise; the entire extended family seemed broken thinking they would lose me. It took some time before my father was able to tell me that heart surgery would be imminent, the consequence of parental negligence or my stubbornness in refusing to take the medicines I cannot say. The mitral valve was damaged and replacement via open heart surgery was the only solution to the problem. This was the first of two surgeries that I would have. My experiences with heart disease made me intensely aware about the hegemony of the medical gaze. The doctor did not inform my parents that the tissue valve that they had used for me only had a lifespan of 8–10 years after which it would have to be replaced and that I would have been better off with a metal valve. This meant more surgeries in the years to come.

This was not the end of my ‘medical journey’. Having attended a health conference, I decided to go for a mammogram. I took the test with the belief that nothing was wrong—all women must get mammograms done—and of course, the test would be benign. As I was undergoing the procedure the senior doctor requested me to take another test. By that time I was frightened and vulnerable, a scared child concealed in the tired body of a woman pretending to be self-assured. The test report confirmed the fact that I definitely had second-stage breast cancer. To describe this as traumatic would be an understatement; the report devastated my world. It was as if cancer broke up my fused thread of temporality—past converted into the present, and the future lost all significance. Cancer changed my relationship with my body. My lifelong intermittent fight with polio had not been as terrifying, daunting and inexplicable as cancer. Psychologically a taboo word, it took me time to understand that the body needed to move on and work through a lot in order to overcome the ‘reality’ of cancer.

Accepting the reality of cancer was not easy. It forced me to confront insidious embodied vulnerabilities unlike anything that I had experienced before. I had to acknowledge that this time my enmity was with a formidable foe, and I had no idea how to live with a disability coupled with cancer. My family, my friends and my students were encouraging me to ‘fight’ harder but I had no rebelliousness left in me. Reading cancer survivor narratives by Lance Armstrong and Audre Lourde only increased my anxieties about my impending journey with cancer and its equally scary treatments. For me, the success stories at that juncture did not ring true as I had no strength to cope with the cumulative pains of polio, heart surgeries and cancer. My fears were augmented as images of women losing their breasts and hair surged in my mind. It was not very easy to communicate to family and friends that I was going to be bald after the chemotherapy. I realised that the lumpectomy and loss of hair tell us something about the way our society responds to femininity. Though we are used to seeing baldness in men, a woman’s greatest glory is considered to be her hair. Besides the cancer itself and the aftereffects of the treatment that were to follow, the idea of transgressing norms of acceptable femininity constituted a form of suffering in themselves.

There have been many times when I took exception to the word ‘survivor’ as it is used in the cancer literature. It is intriguing that the idiom of conquest celebrates the living and indirectly reprimands those who ‘did not fight hard enough’, as if surviving an illness such as cancer is completely a matter of personal responsibility and effort. What was even more hurtful was the necessity to camouflage the personal blame and responsibility for my illness when I realised that had I taken regular tests perhaps the disease could have been diagnosed at an earlier stage. The litany of diagnoses that I have carried in my life—cancer, polio and mitral valve disease—have often led me to think of myself as an ‘illness and disability fighter’ and I reject this label. I am sure everyone wants to fight, but there comes a time where you want to say, ‘hey, come on, give me a break’. As Nancy Mairs, a fellow disabled person recounts, ‘not long ago a friend called me intrepid. But I’m only as brave as I have to be, I reminded her. And I do not want to have to be this brave’ (Mairs, 2001, p. 48). This anecdote resonated more with me than the cancer survivor narratives and their warrior-like rhetoric.

I had no choice but to accept my diagnosis of cancer bravely and not play the victim. I had to agree to go under the knife and have a mastectomy done in order to save my life. As I was wheeled into surgery, I was suddenly reminded of how prisoners marching to their deaths somehow find one defiant gesture to mock the situation. My gesture was my willingness to undergo the surgery, ignoring all fears. Following the surgery and chemotherapy, I disguised my hair loss with scarves but not wigs. This was my way to partially conceal and partially accept my new embodiment. It was a way for me to cultivate the self-identity of a disabled person with multiple health issues. This is not a sign of resignation but rather a validation of my selfhood and my resilience to the vagaries of embodied vulnerabilities.

Triumph over cancer as a formidable foe creates the same problems for women with breast cancer as it does for other people with disabilities. In this sense, there is a similarity between cancer and polio as both illnesses are exemplified as the decisive enemy which assaults the body, and where the body becomes the combat zone split from the mind that must become a disembodied combatant. My cancer treatments ended in March 2006. Cancer transformed my 75-year-old mother into a 24-hour-a-day carer. She was always on call and, even though there were two full-time caretakers to support her, she was petrified. For her the word ‘cancer’ became unendurable and this made it difficult for me to speak about such a personal subject in front of her, especially sharing my experiences of cancer with friends and relatives in my matter-of-fact manner. This felt like a constant fight in which I was trapped, my earlier disabilities beginning to feel insignificant as deep-seated anxieties created newer questions and concerns focussing around the relationship between carer and care recipient.

Having experienced multiple kinds of physical disabilities prior to COVID, I have realised the multiple forms that biographical disruptions can assume and how this is heavily contingent on the specificities of the illness experience. For me, it was not just the cancer but also the heart disease, polio and COVID that created a strong sense of uncertainty in me and engendered the realisation that the illness experience has no real beginning or end but is an endless series of events, each one posing its own complications. Each illness provided me with valuable insights into coping but did not necessarily prepare me for the shock and the disruptions of the following one.

Conclusion

The unique feature of my experiences with COVID was that, unlike my other illnesses and disability, entire social events characterising the pandemic constituted biographical disruptions rather than the embodied experiences of COVID per se. While there were certainly physical ramifications of being infected with COVID along with the attendant fears of recovery and complications resulting from multiple comorbidities, my suffering felt more social and collective as compared to the isolation of my previous illness experiences, and because of this, I felt a strong sense of responsibility to speak out to articulate the unique struggles of people with disabilities during the pandemic. This urgency to speak about embodied precarity had not been not as strong during any of my previous illness experiences. Therefore, having lived through COVID and experienced being infected with it, I came to see that pandemics themselves are biographical disruptions, very similar to Giddens’ critical situations. It is not as much the physiological impact of these illnesses as the entire management of the pandemic that causes massive disruptions in a person’s life.