Analysis: The culture of health and sickness
4 September 2020
Professor David Napier (UCL Anthropology) discusses a case study of a Ugandan community and takes away lessons to be learned about vulnerability before disasters.
A group of researchers, led by David Mafigiri at Makerere University in Uganda, began collecting data this January for a long-planned health vulnerability assessment to identify what makes people and communities more vulnerable or resilient to infectious diseases. This study was in place well before the Covid-19 pandemic as part of Sonar-Global, a European Commission-funded research programme, and the team could amend questions based on current developments.
The data is now being analysed. But it is clear that, since lockdowns are still in place globally for fieldworkers and there is a hold on almost all face-to-face public health research, Uganda may have the only systematic real-time data on how people in at-risk communities conceptualise and respond to the virus.
The information the assessments collected is notable. The interviews lasted between one and three hours, much longer than a normal health survey. Instead of taking blood samples and asking multiple choice questions, researchers met participants in their homes and had structured but wide-ranging conversations about access to services, about availability of medical care and other health-related information, and about local conventions, practices and norms — ‘culture’.
Why culture? And why invest time and effort on things apparently unconnected with health and infectious disease? Because infectious viruses are about social networks and cultural norms, as much as about microbes. As science tells us, viruses are inert, unable to attack us. We transmit viral data though our social networks and cultural pathways. We give viral information to each other by how we live and what we do. Otherwise viruses just sit inert, sometimes for thousands of years. So understanding cultural contexts is just as important as sequencing genomes in tackling viral outbreaks.
Culture is nonetheless downgraded. Most of the time, when medical researchers try to work culture into their models, they fall back on tired stereotypes about local beliefs as obstacles to biomedical care, a supposed opposition of culture and science. In this paradigm, social scientists are lined up to help ‘real’ scientists determine why culture keeps others from doing what’s medically recommended.
A broader understanding of culture recognises its varied potential. Though clinicians may see culture as an obstacle to health, it is also a source of enduring trust. Moreover, it is not just something ‘they’ have: healthcare providers, scientists and policymakers all have their own cultures of practice, which inform their unique perspectives and encourage them to work together.
Cultures of practice
However, the underlying and often taken-for-granted assumptions of culture about what is feasible can also limit innovative thinking. That’s why we use the word culture pejoratively to describe the intransigence of institutional cultures, political, academic or professional. In this sense, accounting for the cultural contexts of health and wellbeing is a primary health determinant — why ‘the systematic neglect of culture in health and healthcare is the single biggest barrier to the advancement of the highest standard of health worldwide’. That’s because culture is, in fact, the key to addressing health equity, especially when providers and target populations operate under different shared understandings about what matters most biologically and socially.
Thus, a cultural context of health approach is critical in responding to Covid-19. Because governments not previously concerned about health equity feel they must blame others for the impact of their own negligence. Because thinking of Covid-19 as only a medical challenge fuels xenophobic fears about outsiders. Because humanitarian action groups talk about working with communities even as inequalities within communities are exacerbated by the crisis. And because, given the socially sanctioned, chronic neglect of citizens already on the margins, Covid-19 pushes those on the edge into overt calamity coping. The taken-for-granted assumptions of cultures of practice give us a sense of belonging and trust, but sometimes blunt creative thinking and social innovation. For our assumptions help little in times of uncertainty. We know this because, when a disaster happens, so many show up late and with outdated equipment.
What can a cultural understanding of Covid-19 vulnerability tell us? We don’t need more research to recognise that the elderly, the homeless and unemployed single parents are especially at risk. They’re already vulnerable socially and economically, and, to our shame, become even more so when their fragile survival strategies are even more challenged.
But inequalities are always exaggerated in a crisis, and then many initially less vulnerable people are also pushed across capability and opportunity thresholds and into conditions of real peril.
That is why Uganda can now tell us more than we might expect. To understand what is happening in real time with real people, we need, as did David Mafigiri, to assess vulnerability before a disaster; like his own research team in Uganda, we need an extant interest in the disadvantaged.
Ongoing empathy is critical. Without that, you have no access to what you should have known and now can’t. Your belated concern rings hollow in the face of that failure, which makes you liable to blame others. Indeed, organised humanitarian action all but stops in Covid-19, as we have little way of knowing what’s really happening on the ground among those most vulnerable, who live alone and without access to online services.
In response to such new instability, the World Health Organisation (WHO) rightly wants a ‘Just Recovery from Covid-19’. That, of course, is critical. But what we need equally is a just preparedness before an epidemic. We have to do the hard work of creating cultures of trust and solidarity in advance, and resist salvation narratives in which epic actions create save-the-world medical heroes and destructive villainous viruses.
In welfare states, where trust in government has remained relatively stable, there are few heroic stories, because stability and a commitment to the common weal lessened the need for bombast well before Covid-19 incited it. Initiatives such as Cities Changing Diabetes (a Danish community engagement strategy sponsored by Novo Nordisk) demonstrate how prior work around understanding health vulnerabilities translates, despite its focus on a non-communicable disease, into actionable understanding in the crisis. That is because the programme has been assessing global health vulnerabilities since 2015, years before Covid-19.
Vulnerability emerges variably, at different times and places. This means that, while already vulnerable populations become even more so under stress, new vulnerabilities emerge that often outstrip old ones. Service industry employees without health benefits and dependent on daily income become more vulnerable, especially where they now have to go back to work, than those elderly who can stay at home and wait it out. High-income physicians without adequate protective gear are as vulnerable as those with chronic pre-existing conditions. Places we previously thought of as havens are anything but: in Europe and the US, the most vulnerable are in ‘care’ institutions: nursing homes, shared housing, prisons.
We failed these vulnerable groups because their illness experiences are socially driven, and that is too often separated from health. We look instead for specific risk factors in isolation without seeing how compounding, already-existing, stressors push populations into extreme vulnerability during a crisis — especially those with few choices and nowhere to go. In the UK, ethnic minorities are dying at higher rates from the virus than the rest of the population; and in the US, African Americans have far higher mortality rates than white and Asian American populations. Yet, as crises widen existing rifts in societies, they also open up opportunities for communities to come together in ways unthinkable in normal times; in Rio de Janeiro, for instance, gangs in several favelas imposed shelter-in-place orders to reduce transmissions.
Communities must often adapt on their own, because political systems are vulnerable to pandemics too: the global crisis is making clearer what is important at national and local levels, and what is less so. It shows us what we collectively value, and makes us reconsider often-tacit assumptions. Indeed, our judgments of what is essential have also changed across the globe, providing a singular opportunity for institutions and governments to rebalance private gain and public good.
This adjustment can go either way. On the one hand, speaking of the virus as a foreign enemy incites xenophobia, with the social category of ‘insider’ — the ‘we’ in ‘we are all in this together’ — getting smaller and smaller. On the other, the pandemic has catalysed new alliances, as with Black Lives Matter and anti-police protests. Mistrust in the institutions of government may be the only thing uniting the far right and far left in countries like the US and Brazil.
That is why ‘just preparedness’ matters, and also why Uganda might lead the way in understanding the human impact of Covid-19. Because this pandemic is not just about an infectious threat, but about the urgency of caring beforehand, and about the steep decline in social trust that emerges quickly in unequal settings where global neoliberal economics have undermined public wellbeing.
Fortunately, that decline has created opportunities in surprising places. Gangs in favelas may seem a stretch when policymakers think about health systems change, but some far-sighted private companies have been quicker than many governments to recognise and respond to shifting public sentiment: sending their employees to work from home, speaking out against racism and calling for more government guidance. However, not all businesses are equal: companies less vulnerable to shareholder pressure to maximise short-term profits are better able to consider their potential long-term future roles, and not just in the next quarter — recognising that an economy cannot survive unless nation states and their citizens have stability, enough income, and access to robust and well-funded care.
Mistrust in business
There have been calls by world leaders, including Ursula von der Leyen, head of the European Commission, for a new Marshall Plan to improve abysmal levels of trust in business recorded by Richard Edelman’s Trust Barometer (5). But that mistrust can only be reversed by sustained longterm commitments that are faithful to a range of stakeholders — including employees, clients and the social and natural environments we all depend upon for survival.
Divisive political leaders, like Donald Trump or Brazil’s Jair Bolsonaro, may blame the left, or the Chinese, or the CIA for Covid-19, based on alternative, often paranoid political narratives that divide local communities. That is because for opportunists, big or small, the crisis remains an intractable intrusion into populist narrative worlds built on political delusion. But the virus’s deadly materiality resists rhetorical defences and counter-factual denials, even if some seem intent on taking the ship down, or watching it sink while drowning in denial. The states lacking welfare can only blame others.
Social trust and faith in institutions are therefore crucial for the collective actions required to halt viral transmission. We have to coordinate our social behaviours in uncomfortable, inconvenient, and even personally painful ways. They are vital to collective wellbeing and require sacrifice; a sense of commonality and social solidarity must be based around shared values — culture. A crisis in governance, correlates with, and can be directly mapped onto, a crisis in trust, because where we find trust is key.
As the US pulls support from the WHO, there is a serious question: where do we go for an independent and trustworthy adjudication on health risk? The world’s biggest healthcare charity, the Gates Foundation, has always espoused magic bullet answers to health problems and is uninterested in the complex social drivers of our wellbeing. The Centers for Disease Control is a US federal agency that works well in good times but in bad times is vulnerable to partisan political nonsense. Without socially trustworthy institutions, how are we to respond to growing uncertainty?
And how, finally, can we learn to deal with sustained uncertainty and the psychological vulnerability it causes? If many governments cannot lead equitably, and viruses are just information we share, there must be other drivers of Covid-19 we can act on. Other factors remain under-represented: the more people there are on the planet, the more often viruses like Covid-19, which are more contagious but less lethal than Ebola, will connect us. And that is a big problem, not only because science, in the absence of a vaccine, still medicalises a pandemic almost entirely driven by our social responses, but because there are more of us to circulate and adapt to that viral information.
This really matters with Covid-19, since, if lasting immunity doesn’t happen soon, we need to rethink the social contract in ways that run counter to those who advocate for biodeterminism or xenophobic scapegoating or maximising self-interest. Otherwise, when the pandemic abates even temporarily, we risk going back to ‘normal’, forgetting what we might have learned until the next infectious disease outbreak, when we will again be completely surprised by what we should have expected. We need to consider the needy before that happens — to put heart and soul into thinking about both how we live together with uncomfortable uncertainty, and how we address together the social and cultural drivers of health vulnerability.
This article was first published in Le Monde Diplomatique on 4 July.