Lectures

Infrastructures of inequality: Caring tweets, public health, and COVID-19 in Delhi

One tweet asks for help finding a hospital bed in Delhi, India’s capital. Another asks where to find oxygen. These tweets joined a sea of similar pleas for assistance over social media amidst India’s second-wave surge of COVID-19 in the spring of 2021, which led to oxygen and hospital bed shortages across the country. People tweeted asking for help for themselves, for their family members, for their friends, and for the domestic workers they employ. They addressed their social networks with the hope of reaching someone beyond their immediate circle, someone with vital connections or information. 

India’s second COVID-19 wave came, it seems, unexpectedly to the public, healthcare workers and the government – despite the warnings of many experts beginning in early 2021. The impact of the pandemic’s first wave in India was relatively mild, and the low numbers of COVID-19 cases lulled the country into a complacency that was soon to appear premature. As much of the world was still in lockdown, life in India seemed to go back to normal with parties, election campaigns, festivals and massive gatherings of people taking place. Some politicians and their supporters even declared the low numbers of infections and deaths a matter of national pride and cause for celebration (Puri 2021).

Amidst India’s second wave of COVID-19, middle-class Indians who rely on private healthcare turned to social media and other connections to secure access to healthcare facilities such as oxygen supply and hospital beds. These calls – and the way they were managed, perceived and problematised – highlight not only the depth of the health crisis facing the middle class but also the deeply entrenched inequalities that determine access to health facilities and infrastructure in India. Unable to access healthcare, middle class Indians found themselves in a situation that many of India’s poor face daily due to the lack of resources and public healthcare. Like India’s poor, who often depend on both formalised and informal community support, middle class Indians sought to mobilise social connections and community in order to access healthcare in the face of health crisis. The negative reactions and sanctioning of calls for help from the middle class on social media also reveal the importance, fragility and tenuousness of the category of ‘community’ when it comes to the access to health services. Community care was desired but sanctioned for the middle class in the midst of pandemic; however, it is an institutionalised approach in public healthcare programmes and service delivery to the urban poor, often said to cover the inadequacies and gaps in public healthcare.

***

As I watched India’s second wave unfold and social media become flooded with cries for help and information, I began reaching out to people I have come to know since I began research on public health and chronic illness among urban poor and middle class people living in Delhi in 2012. “We are lucky and safe, staying at home”, one interlocutor replied. “We are surviving just day by day. My immediate family is safe” replied another person, in oblique reference to the difficulties their friends and extended families were facing.

Since most of the people I worked with have chronic illness, health concerns dominating their everyday life is not a new reality for them. For example, a number of the women I have kept in touch with throughout my research have diabetes. To keep this chronic condition “in control”, as they express it, they need to pay close attention to their daily routines, diets and care relationships. But the pandemic heightened their health risks and feelings of uncertainty, resulting in what Ayo Wahlberg and Lenore Manderson (2020) call a “chronic living in a communicable world.” In other words, having diabetes during the pandemic makes the notion of “control” – and life itself – even more tenuous than usual.

In the wake of India’s second-wave surge, caring for self and others affected by COVID-19 has become a demanding full-time job. For some, finding the necessary supply of medication and oxygen was a desperate, chaotic undertaking: tweeting, making calls every day from early morning to late evening. Others introduced hospital-like care routines at home to try to avoid a serious worsening of the condition that would require hospitalisation. A response from my friend read: “I have had 32 people in my life who have had the virus. My sister and her entire family and all staff and other friends and family (…) I have been keeping tabs on people’s temperature, oxygen levels, blood tests etc. I have made Excel sheets for each family. It’s been good to maintain those records because I have managed to get people on steroids when things looked a little uncertain …”. My other friend in Delhi recovered well, he said, but added: “Everyone I know has COVID-19. But the problem is the oxygen and hospital beds, not COVID. The government has failed completely.” A few days later, his mother passed away in Uttar Pradesh, and he was unable to visit her for the last time. These experiences produced an unprecedented amount of anxiety and loss for middle class Indians, who otherwise lived comfortable lives in Delhi and could access healthcare easily (Krishnan 2021).

While I was able to connect to my middle class friends in India, those who lived in urban poor areas were hard to reach as many have unstable phone access. “Last seen on WhatsApp a few days ago”, read a notification, leaving me wondering if something had gone wrong in a family I met in 2019. When I finally managed to reach them, I learned that they were doing well, but that a lot of people in their neighbourhood had died. “And your diabetes?” I asked a woman whose family I followed extensively in 2018 and 2019. “Sugar is alright now, but I don’t get the [free] insulin from the hospital due to the [COVID-19] situation.” As the acute health crisis put public institutions on hold, the supply of free medication to the urban poor – uncertain at the best of times – halted completely. As a result, some people were unable to access vital medication.

“Mummy has high fever, 40 °C,” another person replied in response to my queries about his elderly mother. “The test will be done tomorrow. Thanks for asking – even our community [hamare log] don’t ask these days” he added. The next day, the older woman was feeling better. Her son hinted at the challenges for the urban poor in caring for their loved ones and in mobilising social support in areas where community care is the principal public health approach, and where the intimacy that comes from living next to each other is unavoidable.

But there was also another strand of responses in this outpouring of hopelessness, uncertainty and cries for help. Some people sent me messages with famous quotes encouraging people to be positive and happy and to ignore the desperation and complaints around. A WhatsApp group for professionals and white-collar workers at first seemed to present reactions no different from the ones above. It circulated recipes of alternative treatments and suggestions for how to ward off the virus, as well as phone numbers of people selling Remdesivir and delivering oxygen. Then, the group’s administrator told its members not to post information related to COVID-19 or appeals for help. The chat went silent. The request to stop posting such information and pleas for help was a direct response to the government’s urge to resist the negativity, be positive and not to reiterate the foreign media’s negative depiction of India. Moreover, the administrator’s request was aligned with the government’s own attempts to remove Twitter and Facebook posts critical of their response to the COVID-19 crisis, especially during the second wave (The Wire 2021; Recchia and Vijayan 2021).

Such censure of public pleas for help aimed to control India’s image domestically and abroad. Yet its effects also highlight the politics around care and help from social relationships and networks during a health crisis. While community care is institutionalised though community health activists (ASHAs) in India’s public healthcare used by the urban poor, in this instance, the boundaries of possibilities for care, and its allowances were redrawn for the middle class. The suppression of middle class pleas for help through social media and personal connections sought to enclose care to people’s intimate relationships. The publicity of suffering was sanctioned, and the intimacy of care was separated from the broader social context.

Importantly, these attempts to recast possibilities for care in the public and mobilise community support also highlight unequal access to healthcare in India. They raise questions about the policing of who can ask for help and how; whose cries for help pose a threat to the nation’s image, and whose health crises are normalised and can even constitute a welcome sacrifice for the sake of national advancement and development. Limited access to healthcare and related acute healthcare emergencies were common among the urban and rural poor even before the pandemic, but these conditions have generally failed to draw the kind of rippling publicity that would make them perceivable as a problem worth attention (Krishnan 2021). Instead, healthcare crises among India’s poor have been historically normalised.

It is not a new phenomenon to ask one’s wider community and social connections for help when it comes to health crises – big and small – in India. What is new about the outpouring of tweets is that this time it was the middle class and professionals such as lawyers and journalists who usually use private healthcare in India, rather than the urban poor, who turned to social connections in asking for help and find care. India’s second wave was epitomised by a well-known journalist tweeting his ever-receding oxygen levels and asking for a hospital bed with no avail. He died without receiving help, “not even from the neighbours”, the Indian national news reported (Aggarwal 2021). This and similar incidents subjected the Indian healthcare system to unprecedented scrutiny by domestic and foreign media, who raised questions about the state of public healthcare in the country.   

Yet, public healthcare in India is used almost exclusively by the poor. Due to the public system’s limitations, many people must rely and build on family, extended kin or neighbourly care regularly. But the community help is not a given; nor is the category of community itself. Among urban poor in Delhi, the mobilisation of help and support from social contacts when accessing healthcare in health crises is a complex endeavour that involves ethical dilemmas and at times puts in question the relationships themselves. What hospital would a neighbour recommend? Where do people with little or no money receive appropriate treatment? Where will they be treated with respect? Which members of the family can step in to help? And what consequences will this have for their relationships (see Das 2016; Banerjee 2021)? If patients and their caregivers need to go to the hospital, can the neighbours be trusted not to enter their empty home? These are the questions about social relationships and community one asks when navigating healthcare assemblages in Delhi. The relationships may or may not be trustworthy. Community relationships have internal dynamics that can not only facilitate, but also obstruct care as healthcare protocols see it (Zabiliūtė 2021). And it is neither given nor certain that the community will come to help, as the experience of pandemic among urban poor and the middle class suggested.

But mobilising support from the community to access healthcare is not only a matter of informal networks, as evidenced by India’s recent turn to the community public health approach. Accredited Social Health Activists (ASHAs) are semi-paid health workers who help the rural and urban poor to access public healthcare. ASHAs mostly focus on maternal, reproductive and child healthcare, but are also mobilised for diverse health interventions, such as polio vaccination campaigns, and, more recently, COVID-19 contact tracing. Community health workers are usually introduced in settings where healthcare and access to it are problematic. In India, the introduction of ASHA role in the primary healthcare programmes is justified by the need to democratise healthcare systems and empower communities, and to address the fact that urban poor do not have easy or straightforward access to healthcare. In the patchy landscape of public healthcare in India, there is a need for community support and community members who are knowledgeable and approachable, and who can direct people towards the right infrastructure and services.

In the second wave of the pandemic in India, accessing healthcare became difficult for the middle class. Turning to social relationships and networks and social media proved to be the only way to survive and to save one’s loved ones. For the poor, accessing healthcare facilities became nearly impossible. It is telling, then, that this publicity of pleas for help, which exposed the inadequacies of the healthcare system, was sanctioned when it came to the middle class, but the forms of community care aimed at such healthcare “gaps” for the urban poor are formalised and institutionalised. Moreover, these differences must be considered in an historical context where healthcare had little political significance in India prior to the COVID-19 pandemic.

In the immediate analyses and media comments and headlines, a narrative of “system collapse” has dominated the descriptions of the COVID-19 case surge in India (Ellis-Pedersen 2021; Jha 2021). However, the system has not collapsed; rather, the pandemic has exposed its long-existing fragilities. While the crisis and horror of the second wave in India was accelerated by the lack of preparation (Lancet 2021), its scale was inevitable given the many years of neglect and underfunding of public health infrastructure. As suggested, this neglect and related unpreparedness characterized the governing of India’s public healthcare by different political powers (Shashank 2021).

India spends a notoriously low proportion of its GDP on health, and its minuscule investment in health infrastructure has been criticised extensively (Reddy et al. 2011; Sengupta and Prasad 2011; Sharma 2015). Many critics have advocated for a universally accessible public healthcare system that takes a horizontal approach; such a system would not only help manage the ongoing effects of the pandemic but also deal with challenges such as chronic illness, aging populations, high health out-of-pocket healthcare expenditures, and would ensure citizens’ right to basic healthcare (Balarajan, Selvaraj, and Subramanian 2011; Chatterjee 2017; Reddy et al. 2011; Sengupta and Prasad 2011).

While India’s health system is patchy and fragile, many of people I worked with nonetheless depend on and utilize its services on regular basis. There are primary healthcare centres that occasionally dispense pharmaceuticals free of cost and in the larger cities, some patients can access diabetes check-ups and receive monthly doses of insulin from public hospitals. Global health experts have deemed immunisation programmes for conditions such as polio in India examples of success. However, the mode of the public healthcare system in India is ephemral: scarcely funded, selective and functioning in the logic of developmental interventions and vertical programmes.

In the context of these healthcare fragilities, the idiom of system collapse, then, seems far from accurate: the fragmented healthcare landscape, atomised programmes and insufficient health coverage hardly constitute a “system” as popularly imagined. Other questions arise: How do crises such as pandemics and global health challenges inflect its efficiency? What health infrastructures and health resources have historically constituted India’s public healthcare, and which postcolonial legacies haunt them? How are the poor, their social relationships and communities imagined in these interventions?

The pandemic has highlighted inequalities in India’s healthcare delivery and generated a public debate about its inadequacies that adds to earlier calls to improve country’s  public health (Narayan 2011; Reddy et al. 2011). Like other invitations to imagine pandemics as a portal (Roy 2020), the invitation to reimagine the healthcare system in India envisions more just health systems that are robust in times of crises. Given the emphasis such calls usually place on community health, this may also be an opportunity to rethink “community” in critical terms – by addressing its power dynamics, hierarchies of social relationships and ethics of care. If pandemics have shown that community and social relationships become important where healthcare systems fail, it has also highlighted that they cannot replace necessary infrastructures and healthcare provision.


Emilija Zabiliūtė is an anthropologist working on public health, urban poverty and kinship in India. She is based at the University of Copenhagen. The research for this essay was based at the University of Edinburgh, funded by Marie Marie Sklodowska-Curie fellowship of The European Commission Research Fund (H2020-MSCA-IF-2017, Grant Agreement 798706). Twitter: @emilijazab


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