The story of Jyoti Kumari Paswan is a parable of our times. At the height of the migrant crisis during the first wave of Covid-19 last year, 13 year-old Jyoti became a global icon of hope and humanity when she cycled over 1,200 kms between Gurugram in Haryana and Darbhanga in Bihar with her ailing and injured father – a migrant labourer – riding pillion.

Jyoti’s heroic journey and heart-rending act of service were eulogised by the national and international media, politicians and NGOs, bringing monetary rewards and laurels for her and her family. Being a young Dalit girl, Jyoti’s actions appeared to defy her socio-economic, gender and caste identities and enshrined her story in exceptional terms.

Yet, I believe, to truly decipher the wider social significance and nuances of Jyoti’s life – and the lives of countless other young children egregiously impacted by the current pandemic – we first must invert the terms of reference from the extraordinary to the ordinary.

What concerns me here are the consequences of scripting children’s audacious efforts of caring for those around them in moments of public health emergencies as singular and decontextualised acts of exception; actions, which in their framings as “exceptional”’ stand apart from, if not at odds with, the commonly assumed (and accepted) status of children as passive – receivers of care. I contend that we can learn far more from the lives of children if we pay attention to their deep-seated and dynamic records of being primary providers of everyday care.

Key questions

How, then, do we recognise the unacknowledged work of care that children put into projects of making the everyday world habitable and healthy for those around them, including adults? How does turning from the extraordinary to the everyday help us rethink children (and childhood) not just in terms of normative dependencies but interdependencies in which children’s mundane acts of care build and bind intergenerational relationships in families and societies during health emergencies? Further, how does recognising children’s everyday care work help the state craft more meaningful forms of material care for the children who have been orphaned, abandoned and debilitated by the pandemic?

In her vital book Children as Caregivers: The Global Fight Against Tuberculosis and HIV in Zambia, medical anthropologist Jean Hunleth explores the “shared vulnerabilities” of children and adults in public health crises. Through long-term ethnographic fieldwork, Hunleth shows that children’s care for sick persons (especially in historically underserved and poor contexts like Zambia) is a process of “commensurability” in which boundaries between healthy and sick, adult and child became blurred.

Not only did children “fill the void” of care vacated by terminally ill or ailing adults, performing important tasks of palliation, children were also involved directly as “promoters of health in their communities” thereby making claims on the social world through intimate (if, at times ‘invisible’) activities between them and their sick guardians in homes, clinics and myriad care settings. Importantly, Hunleth shows how care is instrumental to the types of relationships children need to attain liveable futures and plays a fundamental role in shaping social relationships around childhood.

Global health, which assumes adults – young or old – provide care to the sick then unethically “dismisses the many children who also give care to the sick.” Children are not only passive subjects and sufferers but also actively attend to the suffering of those around them.

More visible in the context of global epidemics like HIV/AIDS is the crisis of care created for children after their guardians have died. According to estimates, over 5 million children lost either a mother, father or both parents during the height of the AIDS crisis in South Africa alone. Anthropologist and physician, Didier Fassin, writes movingly about the “moral economies” of orphanhood during the AIDS epidemic. Orphans, according to Fassin, became the face of the global AIDS crisis and the primary symbols for attracting international donor-capital.

Yet, the “legitimate vulnerability” of orphans led to the “neglect” of maternal health and those children who either suffered without dying, or were left to live in the ravages of broken households without becoming orphans per se. As Fassin and others have noted, what was missing from global (and local) health responses was an acknowledgement of the key fact that children’s care work is embedded in active relationships with the adults around them, which made attending to their social contexts as important, if not more than attending to individual orphans.

In the aftermath of the AIDS crisis, international agencies like UNICEF too issued calls for “focusing less on the concept of orphanhood and more on a range of factors that render children vulnerable”. These factors include the family’s ownership of property, the poverty level of the household, the child’s relationship with the head of the household and the education level of the child’s parents, if they are living. Such an approach propels global public health to take seriously the structural determinants of health affecting vulnerable children and their guardians, which are readily overlooked in local epidemics and emergencies.

Invisible work

Anthropologists have likewise highlighted the invisible care work of millions of children in sub-Saharan Africa as a result of the AIDS epidemic in conjunction with lethal albeit local outbreaks of malaria, malnutrition, substance abuse, tuberculosis and violence. In the context of the devastating Ebola epidemic of West Africa it is estimated that more than 16,600 children were orphaned. Owing to the dramatically high numbers of single-parent and double-parent orphans, anthropologists argued that an attention to the everyday care work of children becomes crucial, for most orphans continue to live with surviving relatives.

Validating children’s capacities to care in such drastic contexts of survival-burdens and structural violence helps acknowledge the efforts of children to enact claims to particular people and households while working to transform their relationships and retain normative identities. The anthropological intent is to both give credit to children for in-depth knowledge of their social worlds (including the cultural nuances of their status as orphans), and also for their actions in actively shaping those worlds.

What must India learn from these global epidemic experiences to better protect its children?

First, it is challenging to recognise children’s everyday care work in India in socio-cultural and politico-legal terms. This is due principally to structural determinants like poverty, caste, class, gender and religion, which determine the social profiles of Indian children and consign them to either lives of relative privilege or impairing child labour.

According to a UNICEF report, child labour constitutes 13% of the workforce in India, with over 10.1 children between 5-14 years engaged in debilitating manual work, domestic work, agricultural work and work in informal settings. These pernicious structural confines combine with India’s ableist socio-legal norms, which morally separate juvenility from adulthood, and prevent the recognition of children as active agents of care.

Indeed, in conditions of extreme social pressure the line between child labour and children’s intimate care sometimes appears as only a tenous one. However, to my mind the negative structural valuation of children’s labour strengthens the need to account positively for the ways in which children, especially in moments of public health emergencies perform life-giving acts of care for ailing parents, sibblings, relatives and even for themselves. Highlighting children as caregivers can allow us to respect children as emissaries of everyday creativity and equally help the Indian state devise norms for upholding children’s dignity not out of the fear of their exploitation but the certainty of their agency.

Second, the need to empirically account for children’s everyday care work in India must become a social, political and legal priority to accord children their rights and entitlements. In the context of the Covid-19 pandemic India’s children are belated stakeholders via the conjunction of three realities: their epidemiological infantilisation as asymptomatic ‘non-patients’; their vulnerability as targets of a possible third wave (even though this is based less on standardised studies of children and more on the political mollification of the ravaged adult middle and upper-middle classes); and most tragically, children’s status as orphans due to mass deaths of Covid-19 afflicted parents.

What remains to be investigated is why the Indian state revealed data on children’s vulnerabilities a year into such a monumental tragedy and that too after orders by the Supreme Court? Is the general absence of transparent data on children in India a reflection of our social, cultural and biomedical infantilisation of children in everyday life? While one appreciates that children’s data is sensitive and requires protections, confidentiality cannot be any excuse for opacity. Data regarding children should have been gathered and made public as a priority by the state from the earliest days of the pandemic to help track and plan for the emergency stage, although this foresight and planning is categorically wanting.

Lack of clarity

Third, there must be moral and material equity in the state’s protection for orphans and other severely and moderately vulnerable children. As of May 29, data from the National Commission for the Protection of Child Rights recorded 7,464 children who have lost either parent, 1,742 who have been orphaned and 140 who are abandoned due to the pandemic. In political announcements, Prime Minister Narendra Modi and states have also announced measures for health insurance, schooling and higher educational allowance for orphans.

While these are important, there is not enough clarity and transparency regarding whether the beneficiaries will technically be children who have lost both parents (stigmatised by labels like “covid orphans”), or one parent due to the pandemic?

The Juvenile Justice Act (2015), which defines “orphan” appears to give primacy to children who are without both parents or guardians. There are already dehumanising reports of surviving kin waiting in despair for aid for orphans and orphaned children themselves being denied entitlements due to Covid-19 death certificates not being issued for their dead parents. Such humiliating and debasing bureaucratic violence against children in the sordid hour of death ethically impugns the Indian State’s humanitarian pretensions. Moreover, as has been well documented even during the AIDS crisis, the State’s focus on orphans needs to be vitally extended to children with disabilities, terminal illnesses and children living in chronic socio-cultural and economic precarity (including their families) who are all being invisibly debilitated by the pandemic.

Fourth, state assistance to orphans and vulnerable children must not end only at educational and sustenance doles. Children’s everyday care work emphasises children’s unaccounted physical and cognitive labour in adversity. According to The Orphan Resilience Study conducted in South Africa during the AIDS epidemic, which followed 1,000 girls and boys over four years, AIDS orphans were 117% more likely to be suffering from post-traumatic stress disorder than children whose parents were alive.

The study also found that orphanhood starts long before a child’s parents die. High, unaccounted levels of anxiety, depression or post-traumatic distress were also found in families with living parents affected by stigmatising illnesses. Equally, children may pick up infections and develop psychological distress, which goes undetected, whilst performing everyday care work in homes during the pandemic. For all these reasons it is imperative that India recognises children as everyday caregivers with distinctive psychological profiles and needs.

This is the first step to value the nuances of their intimate labour, emotional and coping capacities and crucial also to provide for children’s mental health resources. Ironically, stigmas around adult mental health in India during the pandemic are working to doubly disadvantage children as well – as infantile and as lacking in the need for healthy psychosocial services.

New national law

Fifth, India needs a new national law to deal with orphans and those children made vulnerable by Covid-19. This law must extend beyond the confines of the pandemic to future health emergencies and epidemics at large in which children may become moral stakeholders but, as the aforementioned evidence suggests, are seldom made independent material stakeholders in their own right. During the AIDS crisis in southern Africa, the South African government enacted the National Action Plan for Orphans and Other Children Made Vulnerable by HIV and AIDS (2010). This came on the heels of other regional declarations like the Abuja Decleration and the Maputo Decleration in which children were prioritised independently.

An important consequence of these policies also empowered local community care workers to help families with “succession planning” – ensuring in advance that children will be cared for even after their parents have died. In India, orphans have extant legal protections yet these provisions are all within the shadow of the Juvenile Justice Act which seeks to foremostly protect children “in conflict with law”. India needs a new national legislation tailored independently to orphans and the larger spectrum of the unaccounted vulnerable young, ensuring their everyday rights and justice claims are upheld during health emergencies. The pandemic must compel the raison d’etre of child protection laws in India to extend beyond the intent to protect children from criminalisation, child labour or sexual offences.

Recognising children’s everyday care work is thus fundamental to reimagining children from a vulnerable population in need of protections to bearers of rights who are entitled to participate in society according to their evolving capacities. However, as always, our biomedical attitudes to children in the health emergency reflect our infantilising social attitudes towards children even in everyday life.

Medically recognising children as “low risk” (compared to adults) from the start of the pandemic mirrored the ways in which the Indian state has morally erred and alarmingly delayed taking children’s complex social and structural vulnerabilities seriously.

Nikhil Pandhi is a doctoral candidate in medical and cultural anthropology at Princeton University. A Rhodes Scholar, he ethnographically researches global health and the socio-cultural determinants of health in India.