The preface sets the context for the Pandemic and Beyond series and outlines how it is shaped by and sits within the research and funding landscape for arts and humanities during the pandemic. The series arises from a research co-ordination project funded by the UK’s Arts and Humanities Research Council (AHRC) and brought together over 70 solutions-focused research projects that addressed the coronavirus (COVID-19) pandemic between 2020 and 2022. The preface reflects on the unique conditions that shaped this body of research and the methodologies employed, and on the importance of arts and humanities research in addressing the human impacts that intersected in this moment, working to resolve them, mitigate harms, and examine some of the most fundamental human questions across macro and micro crisis contexts. It argues that the series exemplifies the creation of a ‘pandemic humanities’ that demonstrates how arts and humanities are a vital tool in responding to and preparing for complex crises.
As locations that interpret and present the histories of places and people, museums are affective spaces with emotional impacts shaping how we think about ourselves and others. The emotional impact of museums is primarily considered from the perspective of the visitor, with museums as ‘places where people go to feel, to be emotional’. What is less well established is the emotional resonance of museums as a place of work. Those employed in museums, cultural or heritage sectors can become rooted in their work, drawing upon their personal histories as motivation and inspiration, influencing the subject matter they engage with or the approaches they take. In the context of the COVID-19 pandemic, the emotional labour of museum work was both exposed and intensified in workers’ responses to the crisis. This chapter is a consideration of the impact of the COVID-19 pandemic on the museum workforce in Northern Ireland, drawing upon findings from the UKRI-funded project Museums, Crisis and Covid19, based at Ulster University. Focusing on the workplace, we argue, is another route to understanding museum impacts, purposes, value and ethics, an avenue that is barely touched on in existing museum studies literature. Drawing upon interviews, focus group discussions and workshops with people working in and with museums, from a variety of positions and institutions in Northern Ireland, this chapter begins to fill that gap in understanding.
Data-driven decision-making was central to the UK government’s response to the COVID-19 pandemic. Many decisions, informed by data but made without reference to children’s views, had a significant, negative impact upon children. Pre-pandemic some children had already expressed concern that politicians were not considering their views and interests. During the pandemic, the government’s reliance upon data, combined with its pre-disposition to view children as incapable of contributing meaningfully to debates on matters affecting them, and thus its propensity to take decisions without considering children’s views and interests, meant many children felt they had not been heard or respected. This chapter discusses the findings of a small-scale study which sought children’s views about the government’s data-driven pandemic response and confirms that some children want and expect the government to consider their views about matters affecting them, including how their data are used. Although, pre-pandemic, significant concerns were being raised about commercial collection and analysis of children’s data, little attention has previously been given to public sector use of children’s data. The UK government’s response to the COVID-19 emergency has highlighted the complex relationship between public sector data-driven decision-making and children’s participatory rights. Assertions that it will continue its data-driven approach post-pandemic justify a renewed focus both upon the state’s use of children’s data and upon how children’s views feed into state decision-making. This chapter calls for the government to respect its obligations under the UNCRC and ensure that decision-making is informed not only by data but also by children’s views and interests.
Has data ethics been a casualty of COVID-19? Data have played a central role in how we understand, mitigate and adapt to COVID-19. For instance, it was critical to the work of new public infrastructures such as vaccine certification systems and test and trace infrastructures. Aggregated data about individuals provided the basis for priority shielding lists that protect people deemed vulnerable to COVID-19, and also remade the very categories of vulnerability on which decisions to recommend or enforce their shielding and isolation depended. But what happens in emergencies when urgency trumps careful deliberation? In this chapter, we aim to understand how ethics advice featured in decision-making and the governance arrangements of data use in such situations, arguing that a set of ‘emergency data ethics’ are needed to help guide thinking in a future emergency.
In-depth understanding of deafblind people’s perception and experiences of touch has become even more important due to coronavirus (COVID-19) and subsequent wariness around touch and social distancing. New preventive measures were introduced, such as 2-metre social distancing and meeting people only outside or in well-ventilated spaces. Due to the lack of suitable awareness, the specific needs of deafblind people were missed from the safety measures and government policies introduced during the coronavirus pandemic. The project that led to this chapter, Touch Post-COVID-19, addressed this gap by gathering and studying the personal stories and experiences of the deafblind community across the UK during the pandemic. This chapter highlights three stories from members of the deafblind community in Scotland and England, with a particular focus on one member for the sake of clarity. The stories focus on touch as a ‘visual’ cue that offers spatial awareness but is distorted due to imposed wariness on touch because of the pandemic. During COVID-19, governments did not recognise how the deafblind population processes information and failed to consider them in their decision-making. Touch deprivation, caused by rules such as 2-metre social distancing and the individual’s wariness towards touch, has disturbed their information processing and everyday activities. Consequently, the lack of considerate measures to include those with multisensory impairments pushed deafblind people into further isolation when this group is routinely excluded from society under normal circumstances.
On 1 April 2020, the news website Al Jazeera published an article titled ‘Muslim minority doctors first to die on front line of UK pandemic’. The image accompanying the article revealed that all four doctors were Black (Khan, 2020). Over the previous 2 weeks, other stories of healthcare staff deaths had been reported in the papers; many were Black or Asian, many of them migrant staff. As the rising evidence of the disproportionate impact of coronavirus on Black and Brown communities in the UK became known, explanations began to appear in the press on why we were seeing such disproportionate rates of death. While pre-existing inequalities in health and healthcare were contributory factors to vulnerability, there has been muted discussion of implicit or explicit racialised discriminations in the health sector or more widely in society. This chapter uses storytelling as a methodology to develop our understanding of the impact of historical discriminations on experiences in the COVID-19 pandemic through the experiences of Black, Brown and migrant nurses and midwives. It recognises their experience and insights as a crucial asset in creating significant change with which to support the building of a more inclusive society and a more equitable NHS capable of delivering the best patient care. This research was therefore not simply focused on collecting evidence of racial discrimination, but on opening up our understanding of the history of the NHS by placing Black and Brown healthcare workers front and centre in our story of the pandemic.
The COVID-19 pandemic led to a revisiting of the epidemic form. The notions and models bequeathed by medical history and consolidated in seminal works such as Rosenberg's 1989 essay, have been problematised in recent discussions. Scholars have argued that Rosenberg's social drama analogy for the development of epidemic disease rests on unities of time and space that are not as stable as implied. Furthermore, it elides the rhythms and structures of the multiplicity of dramas that are ‘enfolded’ in the main dramatic event. Others have sought to do away with epidemics as ‘events’ altogether, arguing that we are (mis-)guided in this limiting view through conventions and tropes which have been recycled in the preservation of a collective, and selective, epidemic past. Our contribution offers a reconciliatory framework through which epidemics are viewed as the combination of two kinds of events: an epidemiologically defined one carrying within it the potential for several life-events. We borrow premises from the phenomenological theory of ‘event’ to make a distinction between the two and to illustrate their co-presence. This approach allows us to counter the limitations of the closed epidemic form, the danger of presenting a too linear and too homogeneous overview, by bringing attention to the separate and dissimilar epidemic-life-events that may arise. Significantly, this approach helps distinguish between co-presence and contemporaneity showing that even within conditions of familiarity with epidemics the potential for truly original events persists. Â
COVID-19 exposed longstanding neglect in UK social care. This neglect cost lives. It underpinned failings in preparedness within the sector and failures in immediate responses by governments. Data, and the infrastructures that produce and mediate data, are implicated in both. At the start of the pandemic for instance, the UK government did not know who was in care homes, or even where those care homes were. Moral costs and consequences follow the absence from data of people, their interests and what they value. Interventions that bring benefits to certain people or groups may be unfairly distributed, and harms can be discounted. Problems also arose in how existing data came to categorise and value some individuals and groups while neglecting others. Furthermore, the pandemic amplified existing inequalities of epistemic power – the ability to use data was conferred at times to already well-represented groups while others were made ever less visible. These problems cannot be solved through the production of more data alone. Post-pandemic plans for digital transformation must attend to the effects of such enduring issues in addition to expanding data infrastructure. In this chapter, I scrutinise some of these issues and their relationship to data through three theoretic-analytic lenses: complexities within social care systems; the human values which shape what the data measure and the decisions they inform; and the multiple scales at which data matter. I then use this framework to offer brief commentary on prospects of emerging policy promises in the sector.
COVID-19 resulted in democratic nation states worldwide implementing a state of emergency, immediately imposing restrictions on individual liberty – for instance, the freedom to live, travel and work. In many instances, restrictions were imposed without clarity about the terms, conditions and circumstances under which they would be lifted, creating concern about the long-term health of democratic states – and placing democracy itself into lockdown. Despite the evident strain placed on core democratic values and rights, policymakers, scientists and researchers also simultaneously relied on the core democratic principles of rights and responsibility to (in some instances successfully, and in other instances, unsuccessfully) generate legitimacy for their actions, encourage compliance and engender wider social support. These tensions created a crisis of confidence in the pandemic response and the institutions responsible for leading them, rather than confidence in a crisis. Policymakers needed to recognise that they were both relying on and reconstituting the ‘social contract’ at a time of crisis, with citizens as potential active co-creators of the contract, rather than simply passive citizens. Drawing from a wide range of case studies and the findings of citizen juries on good governance undertaken during the pandemic, I argue in this chapter that democratic nation states need, in future crises, to create participatory infrastructures for democracy that act as a check against the risks of concentrating executive power through the blunt instruments of emergency decision-making. Such participatory structures would act to reduce the risk that democracy itself is ‘paused’ or placed in ‘lockdown’.
In Governance, Democracy and Ethics in Crisis-decision-making, we reflect on what it means to govern ethically in a pandemic. We explore what it means to be in a situation in which rational or epistemic framings of the COVID-19 pandemic, with a focus on data and scientific ways of knowing the world, rub up against the way people experienced the pandemic, as an unexpected, and often harmful, event in their own lives. The book brings together findings from The Pandemic and Beyond research projects linked by a focus on how decisions have been made, but looking at the pandemic from very different perspectives. In their exploration of decision-making processes from the everyday to the global, the contributors consider whether and how values have featured in decision-making, and sometimes why they have not. Exploring issues ranging from the authority of the World Health Organization and the power of data during an emergency, to the role of public engagement as a source of policy evidence, contributors consider whether (and how) the expected standards and norms of public life and decision-making should be different in times of crisis. We also reflect that the pandemic seems impossible to disentangle from matters of trust in power and authority. The answers to the questions discussed in this book will be vital in reviewing our experiences of emergency decision-making. As we emerge from the pandemic, the essential lessons drawn out in this book should direct and constrain future decision-makers in both ordinary times and extraordinary emergencies.