28 results in Being Human during COVID-19
List of Figures and Table
- Edited by Paul Martin, University of Sheffield, Stevienna de Saille, University of Sheffield, Kirsty Liddiard, University of Sheffield, Warren Pearce, University of Sheffield
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Part I - Knowing Humans
- Edited by Paul Martin, University of Sheffield, Stevienna de Saille, University of Sheffield, Kirsty Liddiard, University of Sheffield, Warren Pearce, University of Sheffield
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Summary
The COVID-19 crisis has thrown a spotlight onto the lifeand-death stakes attached to how we humans know about ourselves, and what we know other humans to be. One might argue that the pandemic has recreated epistemological anxieties, ontological uncertainties, and methodological divisions. This section of the book will unpack some of these issues, tracing how the images, metaphors and models used by scientists and media, as well as the choices made by policymakers, are affecting how we are thinking about and experiencing the pandemic.
Index
- Edited by Paul Martin, University of Sheffield, Stevienna de Saille, University of Sheffield, Kirsty Liddiard, University of Sheffield, Warren Pearce, University of Sheffield
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Conclusion: Thinking about ‘the Human’ during COVID-19 Times - Conclusion
- Edited by Paul Martin, University of Sheffield, Stevienna de Saille, University of Sheffield, Kirsty Liddiard, University of Sheffield, Warren Pearce, University of Sheffield
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Summary
In this final chapter we draw together some of the main themes emerging from the various chapters and reflect on what this tells us about being human in COVID-19 times. As outlined in the introduction, these essays have focused on three key issues during the pandemic that are fundamentally concerned with the experience, meaning and understanding of being human. Firstly, the marginalization of many groups of people and how they are de/valued in the response to the virus. Secondly, the role of new scientific knowledge and other forms of expertise in these processes of inclusion and exclusion. Thirdly, the remaking and reordering of society as a result of the pandemic and the opening up of new futures for work, the environment, culture and daily life. These themes were considered in the four sections of the collection, and the main points from each are summarized here, before a final consideration is offered on what this tells us about being human during and after the pandemic.
Knowing humans
This collection of essays starts by exploring how COVID-19 has been known and represented in different metaphors, models, representations, and media, as the pandemic has unfolded. In analysing these processes, new insights are provided about how we understand the human. While the virus was the same molecular structure the world over (at least before the onset of variants), this section shows the myriad of different methods and resources by which the resulting disease and its impacts became known to policymakers, professionals and publics, and how these differed across the world. Three key features of this emerge. Firstly, whether through science, metaphor or imagery, the ways in which COVID-19 became known could both exacerbate existing inequalities or provide the means to counter them (Nerlich; Ballo and Pearce; Rosvik et al). In this sense, they form the ground for contestation over the meaning of COVID-19. Secondly, citizens found themselves dislocated from established sources of knowledge about the virus, which they felt to be either incomplete or inadequate (Garcia; Vicari and Yang; Rostvik et al). These uncertainties about what risks they faced, how to respond, and their responsibilities to self and others, fed into high levels of distrust and confusion.
Frontmatter
- Edited by Paul Martin, University of Sheffield, Stevienna de Saille, University of Sheffield, Kirsty Liddiard, University of Sheffield, Warren Pearce, University of Sheffield
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sixteen - Inclusive Education in the Post-COVID-19 World
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- By Anna Pilson
- Edited by Paul Martin, University of Sheffield, Stevienna de Saille, University of Sheffield, Kirsty Liddiard, University of Sheffield, Warren Pearce, University of Sheffield
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Summary
Introduction
The COVID-19 pandemic has engendered and exposed inequality across society, and in few arenas more sharply than the education system. Disabled children have long been positioned as ‘outliers’ in a system created to embed neoliberal ideals – wherein success is presaged on a narrow concept of achievement, and anyone that cannot or does not meet these normative standards is deemed ‘less than’, and is, to adopt the parlance of critical disability studies, ‘othered’. This is despite the fact that for the past two decades, inclusion has been considered a cornerstone of national educational policy in England.
Even prior to COVID-19, disabled children in England were found to be having a poorer educational experience than their peers. The House of Commons Education Committee’s Inquiry into Special Educational Needs and Disability (SEND) in 2019 assessed the impact of the implementation of the Children and Families Act 2014, which was supposed to constitute the biggest reform of SEND education in a generation. Instead, the Inquiry identified not just structural issues (for example, inadequate funding, limited staffing capacity, absence of joinedup services) but also, in organizational and systemic behaviours failing to ensure accountability and inclusion, institutionalized ableism. The pandemic has served to exacerbate this trend, ushering in a raft of new practical, logistical and attitudinal barriers faced by disabled children. This active discrimination, perpetuated by the Coronavirus Act 2020, is symptomatic of long-term marginalization of disabled children in education, which focuses on making the child ‘fit’ normative systems, rather than being responsive to individual needs.
Therefore, despite its premise as a force for justice and equality, inclusive education often (unwittingly) perpetuates cycles of ableism: ‘as a humanist orientation, inclusion privileges human traits (thought, capacity, sense-making)’ (Naraian, 2020: 1). While this (at least superficially) egalitarian conception of humanism has fed into legislation that has sought to protect the rights of disabled children (for example, The UN Convention for the Rights of the Child, 1989; Children and Families Act 2014), it could also be argued that it fails to recognize the power and promise of individual difference, as well as our inevitable entanglement with non-human entities and systems. Therefore, this narrow concept of ‘inclusion as fitting in’ may, in actuality, be exclusionary.
ten - Genomic Medicine and the Remaking of Human Health
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- By Paul Martin
- Edited by Paul Martin, University of Sheffield, Stevienna de Saille, University of Sheffield, Kirsty Liddiard, University of Sheffield, Warren Pearce, University of Sheffield
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Summary
The contemporary development of genomics – the decoding of our DNA – marks an important turning point in how we understand the human. This is nowhere more apparent than in the UK, which is leading the world in investing in and developing powerful genomic technology platforms that may have profound consequences for the future of healthcare, civil liberties and personal identity. While these developments have been gestating for two decades, they matured and moved centre stage during the pandemic with the massive increase in gene sequencing for tracking Coronavirus. This chapter will examine the social implications of the growing use of genomics and gene-based screening technologies, and analyse how they are contributing to an important shift in how we understand human health. This emphasizes the biological and individualized nature of disease in contrast to the social determinants of health and illness, supporting an increasingly biomedicalized understanding of the human.
A vision of genomic medicine to improve personal and population health
The massive public and private investment in genomics over recent years is inspired by a vision of so called ‘personalized medicine’, where treatment is guided by a knowledge of an individual’s genetic makeup. This is used to assess the risk of disease, design better treatment regimens and predict response to therapy. It is being enabled by the growth of targeted therapeutics and gene-based diagnostics that stratify patients and diseases into discrete sub-populations. This utopian imaginary also aims to improve public health by enabling new forms of population surveillance based on genetic risk profiling and reproductive ‘choice’ through improved antenatal screening. For its advocates this offers hope for a new kind of medicine which identifies the underlying cause of many diseases as being within the body, rather than in the external environment.
The development of genomic medicine is an international phenomenon, being actively pursued in North America, Europe and East Asia. It is driven by major government investment, as well as novel forms of public-private collaboration, and is best illustrated in the UK, which is establishing itself as a global leader.
Over recent years, a series of large-scale projects have started to develop the core infrastructure for the widespread adoption of genomic medicine in the UK National Health Service (NHS).
five - Managing Pandemic Risk in an Interconnected World: What Planning a Wedding Shows about Early Responses to the COVID-19 Outbreak
- Edited by Paul Martin, University of Sheffield, Stevienna de Saille, University of Sheffield, Kirsty Liddiard, University of Sheffield, Warren Pearce, University of Sheffield
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Summary
Introduction
Over the past couple of years, a growing number of studies have investigated the social responses and environmental, social, psychological and economic impacts of the COVID-19 pandemic (Jasanoff et al, 2021; Harambam, 2020). As with other contributions to this volume, these studies suggest that the current planetary crisis will generate profound transformations in paid and unpaid labour, mobility, energy use, democratic government, law enforcement, and trust on media and expertise. Some commentators even argue that COVID-19 involves an important reshaping of contemporary globalization, characterized by ‘intensifying dynamics of instability, disintegration, insecurity, dislocation, relativism, inequality, and degradation’ (Steger and James, 2020: 188). While large-scale and long-term implications of COVID-19 have been explored, the literature has paid less attention to the early days of the pandemic outbreak, when these important and profound transformations were mostly out of sight and had only started to manifest.
Intending to make a modest contribution to fill this gap in the literature, this chapter focuses on the days that followed from 11 March 2020, when the World Health Organization (WHO) characterized COVID-19 as a pandemic. The research method and the data presented here are rather unusual. The account I provide draws from my own experience as the host of an international wedding scheduled for the 21 March 2020 in my hometown, Pachuca, Mexico. Although unexpectedly and unintendedly, organizing an international wedding turned out to be an exceptional way of documenting early responses to the nascent pandemic of a very diverse group of people. Since my partner and I are a German-Mexican couple that lived and studied in the UK for about six years before moving to Germany, our guest list included around 40 people travelling from nearly a dozen countries. Since we were in constant communication with people exposed to different news, local concerns, regulations, health policies and travel restrictions, we were able to get a sense of the rapidly transforming attitudes from individuals and governments in different corners of the planet towards the spread of the virus.
The account I provide here, however, cannot be taken as that of a neutral and innocent observer. The ways in which my partner and I communicated with our guests contributed to some extent to how they perceived and exposed themselves to the risks.
one - Making Models into Public Objects
- Edited by Paul Martin, University of Sheffield, Stevienna de Saille, University of Sheffield, Kirsty Liddiard, University of Sheffield, Warren Pearce, University of Sheffield
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When the UK government switched its COVID-19 strategy from mitigation to suppression on 17 March, it seemed a case of ‘new data, new policy’. News reports cited how modelling from Imperial College’s Centre for Global Infectious Disease projected between 410,000– 500,000 deaths, prompting the government to implement stringent lockdown policies, and upending the UK’s political economy. Unsurprisingly, given the stakes involved, public debates about government policies and their effects have been intense; for example, the time taken for the UK to introduce a lockdown policy and the unequal effects on health and wellbeing. However, two broader questions regarding the relationship between science, politics and publics now demand reflection: how is science advice being formulated, and how is that advice being used to justify policy decisions in the public interest? We attempt to answer these questions by focusing on whether the models that lie at the heart of COVID-19 science can become ‘public objects’, helping to foster both public debate about policy and trust in the institutions that we rely on to make life-and-death decisions.
What’s missing from evidence-based policy?
Despite the UK government’s recent rocky relationship with experts, scientific advisers were placed at the forefront of the public response to COVID-19, both rhetorically, through phrases such as ‘following the science’, and visually, with the Prime Minister being flanked by scientific advisers at daily press conferences. The government and its experts appeared to be working harmoniously on ‘evidence-based policy’, the rational ideal of creating knowledge for decision making. However, relying on science for the public validation of policy conceals an array of judgements about what that science includes and excludes, and what this in turn says about how, and for whom, the state cares.
In the early days of the pandemic, epidemiological modelling dominated UK science advice. On the surface, the government’s response to the Imperial College report seemed like the ideal of how evidence-based policy should work. Yet, if this modelling was decisive in prompting policy change, then it should also be acknowledged that models imagine human experience as a rather homogeneous affair.
Introduction
- Edited by Paul Martin, University of Sheffield, Stevienna de Saille, University of Sheffield, Kirsty Liddiard, University of Sheffield, Warren Pearce, University of Sheffield
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- Being Human during COVID-19
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This book centres on questions of the human that are raised by the pandemic which began in 2019 and addresses these through a series of short, accessible and thought-provoking essays that range across disciplinary boundaries and intellectual silos.
The COVID-19 crisis poses massive challenges for many citizens, businesses, policymakers and professionals around the globe. The pandemic has highlighted the deep divisions and inequalities that already existed, while at the same time opening up new fissures and fractures in society. However, as many have commented, the crisis also presents new opportunities to fundamentally rethink many aspects of social, cultural, psychological and economic life. Three key issues have emerged in this context that are fundamentally concerned with the experience, meaning and understanding of being human. Firstly, the marginalization of many groups of people, most notably members of Black, Asian and minority ethnic (BAME) communities, disabled, young, older and displaced people and how they are de/valued in the response to the virus. It is vital that their experiences are included when thinking about life after COVID-19. This collection pays special attention to the experience of disabled people, a group often neglected in many discussions of the pandemic. Secondly, the role of new scientific knowledge and other forms of expertise in these processes of inclusion and exclusion. Little critical attention has so far been paid to the central role of science in shaping our understanding and experience of the pandemic. Thirdly, the remaking and reordering of society as a result of the pandemic and the opening up of new futures for work, the environment, culture and daily life. At the same time, the relevance and applicability of human and social sciences have been debated as we enter a period of knowledge generation that has emphasized the biomedical over the socio-political or psycho-political. These critical understandings of how we might better make the future are still missing from public discussion of the post-COVID-19 world.
The focus on ‘the human’ as a central analytical heuristic is a defining feature of the approach taken here. This owes much to ideas coming out of the broader field of what has become known as the critical posthumanities.
Contents
- Edited by Paul Martin, University of Sheffield, Stevienna de Saille, University of Sheffield, Kirsty Liddiard, University of Sheffield, Warren Pearce, University of Sheffield
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fourteen - Where Will an Emerging Post-COVID-19 Future Position the Human?
- Edited by Paul Martin, University of Sheffield, Stevienna de Saille, University of Sheffield, Kirsty Liddiard, University of Sheffield, Warren Pearce, University of Sheffield
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- Being Human during COVID-19
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Summary
Introduction
Despite long-standing warnings about the likely emergence in the near future of a novel coronavirus to which humans had no immunity, the pandemic caused by COVID-19 caught most countries unprepared. As of 18 April 2021, the world had recorded three million deaths due to COVID-19. The series of lockdowns adopted by most countries in an attempt to slow down the spread of the virus resulted in about 255 million full-time job losses in 2020 (ILO, 2021) many of which are likely to become permanent even after the pandemic is brought under control. Controlling COVID-19 has further challenged the fundamental human right of freedom of movement and ushered in a range of new methods of surveillance and control of public behaviour. It also underlined long-standing inequalities, with the burden of illness falling disproportionately on already disadvantaged groups, who tend to be more precariously employed (Warjri and Shah, 2020).
As worrisome as these trends are, it is also possible to imagine a future where COVID-19 leads us towards something more equitable, more humane and beneficially globalized (as well as better preparation for pandemics to follow). Although the future is deeply uncertain, and as of the time of writing the pandemic is far from over, we have also identified some positive trends which are worthy of discussion. We argue that the pandemic has shown us the possibilities which might be derived from shifting our focus from an economy based on always increasing monetary exchange of goods and services, as measured by gross domestic product (GDP), to an economy focused on increasing social resilience and wellbeing. Key to this is a shift away from our present obsession with market-based indicators and a movement towards a growth-agnostic approach to innovation. In previous work, we have called this ‘responsible stagnation’ (de Saille et al, 2020), a term which could also describe the global halt to economic activity which occurred in March 2020 as the only means of stopping the spread of COVID-19. In this chapter we highlight some trends towards growth-agnostic, social innovations that occurred during 2020, focusing on human flourishing rather than economic growth.
Part III - Biosocial Humans
- Edited by Paul Martin, University of Sheffield, Stevienna de Saille, University of Sheffield, Kirsty Liddiard, University of Sheffield, Warren Pearce, University of Sheffield
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How is new scientific knowledge, as well as its popularization and application in various biomedical technologies, changing ideas of what it means to be human in the 21st century? These include the reworking of long-established ideas of biological determinism in understanding both health and behaviour. The pandemic is shifting these discourses and the way in which we value the life of different humans, reinforcing existing social divisions and creating new ones.
thirteen - Science Told Me (But I Couldn’t See Its Point)
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- By Rod Michalko
- Edited by Paul Martin, University of Sheffield, Stevienna de Saille, University of Sheffield, Kirsty Liddiard, University of Sheffield, Warren Pearce, University of Sheffield
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- Being Human during COVID-19
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In the following, I invoke the experience of disability, my blindness, and of ageing, and I will show how scientific responses to COVID-19 have rendered the combination of the two not only as a site of vulnerability, but also as a life barely worth living. I will explore how vision together with its sister, the virtual, have diminished touch. Touch has become a method for vision to elevate itself to the ‘master sense’. Vision is thus regarded as the best way to experience the inter-human, constituting blindness, with its ‘master sense’ of touch, as not merely second best, but as beneath notice by and irrelevant to the human project. Finally, I will show how blindness and old age co-mingle and how science has used COVID-19 as the occasion to emphasize the diminished humanity of both.
Austin Clarke once told me that he was ‘getting old’ and that he ‘hated it’. And now, I too am getting old and like Austin, I hate it. When you think about it, really think about it, there isn’t anything good about getting old. And, blindness doesn’t help old age get any better.
One day at a time; live life one day at a time. This is an admonition that old age often casts our way. Harsh as it is, it does seem as though it is our only choice; not that anyone, regardless of age, can live life more than one day at a time. But, in old age – this becomes a conscious choice. Living today as though it were the last day of your life takes on an eerie poignancy in old age. This is captured very well in an old joke; a person of 85 years is asked, “How do you start your day?” They reply, “I read the obituaries in the newspaper. If my name does not appear there, I get out of bed.”
Perhaps the situation is not as drastic as this, but only perhaps. The sense of time being short and quickly passing, as well as the dread of wasting what time remains and the need to grab it as it passes by, haunt us in old age. A lament – I won’t get those two hours back – takes on the brilliance of a clear bitterly cold winter’s day and has the same humbling effect. Time, we realise in old age, is indeed precious.
Part IV - Human Futures
- Edited by Paul Martin, University of Sheffield, Stevienna de Saille, University of Sheffield, Kirsty Liddiard, University of Sheffield, Warren Pearce, University of Sheffield
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What will it mean to be human in the future? A future in which different kinds of humans can flourish together is possible, but so too is one of social and ecological breakdown. Will we live alongside robot companions and genetically edit the next generation? Can we rethink how the economy works or how we educate our children? This section considers not what will be, but how we imagine what could be, examining the future as something co-created between science, technology, politics and society in the here and now.
twelve - ‘I’ve Got People’s Spit All over Me!’: Reflections on the Future of Life-SavingStem Cell Donor Recruitment
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- By Ros Williams
- Edited by Paul Martin, University of Sheffield, Stevienna de Saille, University of Sheffield, Kirsty Liddiard, University of Sheffield, Warren Pearce, University of Sheffield
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- Being Human during COVID-19
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Introduction
Like other kinds of tissue donation, stem cell donation systems rely on framing humans as reciprocal, prosocial agents engaging in the communitarian, altruistic act of donation. COVID-19 highlights how, particularly in racially minoritized communities, interpersonal contact in trusted encounters and spaces is a key part of the normative work of encouraging stem cell donation. Thinking through this as an example of how we as humans often need to be co-present to generate affective ties, build new communities and counter forms of inequity and mistrust, this chapter offers an illustration of how the pandemic disrupted this key aspect of being human.
Stem cell donor registries – used to source donor stem cells for treating blood cancers – are currently insufficiently ethnically diverse, meaning that racially minoritized patients in the UK have poorer odds of locating a suitable donor. New donors are registered at in-person events organized to target potential racially minoritized donors. Registrants provide saliva to be tissue typed and placed on the registry. This saliva, full of biotechnological potential, is now also a recognized vector for COVID-19 transmission. As the world reopens, it is hard to imagine that these busy events where saliva-saturated swabs swap hands will restart with the same enthusiasm.
This chapter explores the value of these in-person events in generating registrations amongst racially minoritized people who, importantly, are recruited with less success through the digital routes that recruitment work is reliant upon during pandemic restrictions. First briefly contextualizing stem cell transplantation and its attendant racial disparities in access in the UK, the chapter then describes the saliva-orientated work of recruitment. It then reflects on the potential consequences of its cessation.
Stem cell transplantation and racial inequity
Since the 1970s, stem cell transplants have emerged as a wellestablished and increasingly common treatment (see Passweg et al, 2018). If a patient cannot find a matching donor in their family, their clinician can call upon a global network of registries connecting databases of volunteers to locate donors for their patients. These donors will have initially provided their tissue type via saliva, possibly at a recruitment drive, from which they were logged on a stem cell registry awaiting the rare occasion that they – out of nearly 40 million world-wide donors – might be a patient’s genetic match.
two - Pandemics, Metaphors and What It Means to Be Human
- Edited by Paul Martin, University of Sheffield, Stevienna de Saille, University of Sheffield, Kirsty Liddiard, University of Sheffield, Warren Pearce, University of Sheffield
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- Being Human during COVID-19
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Knowledge and human knowledge
Knowledge and metaphor go hand in hand. We create and expand knowledge through metaphors and we need knowledge to understand metaphors. Metaphors are crucial to the production of knowledge, as they allow humans to make connections between what is already known and thinkable and what is not yet known and neither thinkable nor sayable. By mapping meaning from one domain of knowledge or perception onto another, metaphors create new meaning. This includes knowledge of what it means to be human.
The ability of metaphor to make us see things in certain ways, and from there to understand and explain them, is fundamental to seeing, understanding and dealing with unknown and invisible phenomena. At the end of 2019 a new virus, severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) emerged in China, with the World Health Organization declaring the associated disease, COVID-19, a pandemic on 11 March 2020. As early as 21 January, the US Centers for Disease Control asked a science illustrator to provide an image of the virus. This image of a spikey ball, and many others like it, spread around the world and became one of the first ways in which people came to know the virus and the pandemic.
The spikey ball inspired numerous subsequent images, as well as many polemical takes on how politicians had failed to deal with the virus. This chapter outlines how two heavily criticized leaders, former US President Donald Trump and UK Prime Minister Boris Johnson, used metaphors to shape a verbal image of the virus that served their political purposes.
All knowledge is political but some is more political than the rest. Metaphors play an important role in bringing knowledge and politics together, but can enhance ignorance as well as understanding.
Metaphors that make us less human
In April 2020, former President Trump started to repeatedly use a familiar and worrying metaphor, describing the virus as the ‘invisible enemy’ (Chan, 2020): ‘In light of the attack from the Invisible Enemy, as well as the need to protect the jobs of our Great American Citizens, I will be signing an Executive Order to temporarily suspend immigration into the United States’.
seven - “Why Would I Go to Hospital if It’s Not Going to Try and Save Me?”: Disabled Young People’s Experiences of the COVID-19 Crisis
- Edited by Paul Martin, University of Sheffield, Stevienna de Saille, University of Sheffield, Kirsty Liddiard, University of Sheffield, Warren Pearce, University of Sheffield
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- Being Human during COVID-19
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Introduction
Throughout our co-produced project, Life, Death, Disability and the Human: Living Life to the Fullest (ESRC 2017– 2020), disabled children and young people living with shortened life expectancies have readily emphasized their human worth, value, and desire for the future. They have done so in disabling cultures that routinely deny them opportunity, access, and expectation. Perhaps not surprisingly, our conversations with disabled young people – and our interpretation of them – became more complex upon the onset of the COVID-19 global pandemic. Suddenly thrown into a moment where all lives became (more) vulnerable – an already-lived reality of many of the young people in our project – it was also a time where cultures of ableism and disablism were made more explicit, and existing inequalities exacerbated. For clarity, we use the terms ‘ableism’ and ‘disablism’ throughout this chapter. Ableism relates to the material, cultural and political privileging of ability, sanity, rationality, physicality and cognition (Braidotti, 2013), while disablism is the resultant oppressive treatment of disabled people (Slater and Liddiard, 2017).
In this chapter we share co-researchers’ own blog posts and writings on their experiences of living through a pandemic. Importantly, young people’s voices explore the (new) ways in which they have made sense of risk and threat, from the virus itself, but also from discriminatory emergency policymaking, compromised access to health resources, and a general lack of governmental support – all of which has affirmed the disposability of disabled and vulnerable lives in contexts of dis/ableism.
“I know full well in this COVID-19 pandemic that my life is not one that will be saved”: managing discourses of human worth
COVID-19 began with early public health messages that only the elderly and those with existing health conditions are most at risk of serious illness or death. Such ontologically violent messages quickly sought to reassure an overwhelmingly anxious public at the expense and distress of some of those considered the most vulnerable. Further, government ministers affirmed herd immunity as an initial key strategy: the concept of allowing publics to be exposed to a virus, in the hope that spreading it among those who are at low risk means that a large part of the population becomes immune.
fifteen - (Genome) Editing Future Societies
- Edited by Paul Martin, University of Sheffield, Stevienna de Saille, University of Sheffield, Kirsty Liddiard, University of Sheffield, Warren Pearce, University of Sheffield
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- Book:
- Being Human during COVID-19
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- Bristol University Press
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- 13 October 2022
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Marginalized communities (including those who are low-income and those who come from historically disadvantaged communities of colour) are often unable to access the benefits of science and technology, yet may be disproportionately subject to the harms.
Shobita ParthasarathyThe global COVID-19 pandemic is relevant for gene editing primarily because of what the pandemic reveals about the politics of technology. Technologies, in their design, their function, the systems through which they are distributed and made available, owned, controlled, and regulated, are never neutral. They impact different people, and different groups in society, differently. The distribution of benefits and harms from technologies often, though not inevitably, mirrors existing patterns of inequality and vulnerability.
The social determinants of health are well known in public health, if often neglected in health policy. However, coronavirus can be thought of as a ‘vulnerability multiplier’. People already living precarious existences, whether because of poverty, discrimination, pre-existing illnesses, or intersectional combinations of these and other factors, are more likely to be exposed to COVID-19, to suffer worse outcomes when they contract the disease, and to have a harder time dealing with precautionary measures such as social distancing, even when they do not contract the virus.
Importantly, the inequality-exacerbating effects of the pandemic are not limited to the virus itself, but extend to the various technologies deployed to manage, treat or protect people, from masks and PPE, to Remdesivir and other drugs that manage symptoms of COVID-19 infection, and of course, the COVID-19 vaccines. Historically disadvantaged communities, such as African-Americans in the US, may be further disadvantaged by limited and inadequate access to the vaccination programme and uncertainty about trustworthy sources of vaccine safety information (Dembowsky, 2021). In the UK, it has been reported that concerns raised by BAME NHS staff about inadequate and unsafe PPE were ignored by the management at some hospitals (Harewood, 2021).
Access and fairness issues manifest at the global scale as well. Access to Remdesivir has been beset by high prices and uneven access within and between countries (Boodman and Ross, 2020).The current distribution of doses of the major COVID-19 vaccines has been massively skewed in favour of the world’s richer nations, which have received an estimated 86% of all COVID-19 vaccine produced to date (Collins and Holder, 2021).
eleven - Frailty and the Value of a Human in COVID-19 Times
- Edited by Paul Martin, University of Sheffield, Stevienna de Saille, University of Sheffield, Kirsty Liddiard, University of Sheffield, Warren Pearce, University of Sheffield
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- Book:
- Being Human during COVID-19
- Published by:
- Bristol University Press
- Published online:
- 13 October 2022
- Print publication:
- 26 April 2022, pp 92-99
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- Chapter
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Summary
At the outset of the COVID-19 pandemic in the UK, the National Institute for Health and Care Excellence (NICE) produced a rapid guideline (NICE, 2020) for adult critical care that made frailty pivotal to assessments. It aimed ‘to maximise the safety of patients who need critical care during the COVID-19 pandemic [and] … make the best use of NHS resources’. Consequently, ‘frailty’ became key to both avoiding interventions with the potential to cause harm and, implicitly, to rationing access to care.
What is frailty, how did it become a central construct for making care assessments during the pandemic, and what are the implications of the increasing currency of this concept within healthcare? In this chapter we consider these questions and the multiple constructions of the frail ageing human that emerge from this. We draw on research, media, official reports, and excerpts from an ethnography undertaken on hospital wards before the pandemic.
While frailty has long existed in the vernacular, it has recently emerged as a clinical object around which healthcare is increasingly organized. Clinical conceptualizations of frailty consolidate around a phenotype and a deficit accumulation model. The phenotype depicts frailty as a syndrome comprising characteristics such as weight loss and slow walking speed. The deficit accumulation model has had various incarnations, most recently as the Clinical Frailty Scale (CFS), which positions people on a functional continuum, with assessments aided by descriptors and illustrations.
Efforts to define frailty have transformed it from something ‘we know when we see it’ into something that can be measured, evaluated, and incorporated into policy. As a clinical concept, frailty is used increasingly for planning and making prognoses, far beyond its origins in geriatric medicine. For example, in England in 2017/18, frailty screening for those aged 65 and over was contractually introduced in general practice, resulting in an automatic categorization of ‘frail’, ‘pre-frail’ or ‘robust’, according to electronic health data (Tomkow, 2020).
Social scientists have repeatedly problematized the language of frailty, showing the term to have multiple and evolving meanings, but nevertheless consistently understood by those who are labelled as frail to be pejorative, stigmatizing and disempowering (Grenier, 2007; Shaw et al, 2018).