Navigating responsible bio-political citizenship: Cross-country comparison of stigma in Covid-19 illness narratives in Germany, Japan, the UK and the USA

Abstract

This paper aims to further understanding of discourses of responsible bio-political citizenship during the first year of the Covid-19 pandemic. This was an interview-based qualitative study comparing experiences of 103 people who were ill with Covid for the first time across 2020 in Japan, Germany, the USA and the UK. Comparative thematic analysis explored discussion of responsibility in relation to Covid illness, experiences of social fracture and stigma, and the strategies employed to resist or mitigate stigma. This comparative analysis highlighted significant similarities across countries. We identified three mysteries of Covid illness experiences that impacted the work of navigating biopolitical citizenship. First, the mystery of how people caught Covid. There was an inherent paradox of following guidance yet nonetheless falling ill. Disclosure of Covid to minimise onward transmission was held in tension with accusations of irresponsibility. Second, the mystery of onward transmission. Uncertainty about transmission placed participants in a liminal space of potentially having caused harm to others. Third, the mystery of how long illness should last. Uncertainty about ongoing infectiousness made social re-entry difficult, particularly in instances of persistent symptoms. We demonstrate the instability of certainty in the context of new and emerging forms of biopolitical citizenship. Guidance and emerging scientific evidence sought to demystify Covid through providing certainty that could guide responsible actions, but where citizens experienced paradoxes this had the potential to exacerbate stigma.

1. Background

This paper examines emerging discourses around responsible bio-political citizenship during the first year of the Covid-19 pandemic. The Covid-19 pandemic provides an opportunity to learn from how people describe the emerging relationship between personal responsibility, uncertainty and stigma in response to the mysteriousness of Covid as a novel illness. Exploring experiences of novel Covid illness in the first year of the Covid-19 pandemic in Japan, Germany, the UK and the USA, we examine shame and stigma as products of situated interactions within specific socio-political contexts, indicative of tensions in the performance of selves as responsible bio-political citizens.

1.1. Shame, stigma and biopolitical citizenship

The modern neoliberal self, viewed from a perspective on states and citizens informed by Foucauldian biopower, is expected to ensure good health purposefully and autonomously through living a corresponding ‘good’ life. Health is perceived as a material outcome of ‘judicious decisions and actions’ (Davis et al., 2021) made by responsible citizens, with limited reliance on states or institutions to ensure safety (French and Monahan, 2020).

Biopolitical approaches to health governance foreground surveillance as a strategy for mitigating illness, both at the state level - whereby states use data to monitor population health (Decoteau & Garrett, 2022) - but also at the individual level. State-delivered guidance about healthy behaviour aims to inculcate in individuals a sense of responsibility to care for themselves, undertaking self-surveillance (Ayo, 2012). Brown and Nettleton (2017) argue that ‘one's immunitary constitution becomes a matter of purposeful biopolitical responsibility’, with health-maintaining and illness-avoiding practices enmeshed with broader codes of societal ethics.

In the event that illness does befall citizens, they are subject to further responsibilities. First, one has to enact a performance of ill-health that corresponds with scientifically and politically defined categories of illness in order to access care, what Petryna (2004) terms ‘biological citizenship’. Maintaining this access requires engaging with and adhering to technologies and treatments of biomedicine, performing ‘therapeutic citizenship’ (Nguyen et al., 2007). Decoteau (2013), providing a postcolonial critique of Foucauldian biopower, draws attention to the consequences of this approach in the Global South, where citizens can be made to forgo indigenous healing practices in order to access state or NGO biomedical services. Equally important as performing the right illness is performing the right recovery. Sweet (2021), exploring the experiences of women accessing state support in the context of domestic violence, argues that support is often contingent on playing the role of a ‘good survivor’ informed by biomedical notions of trauma. She highlights that for any citizen temporarily dependent on the state, providing evidence of commitment to recovery, and therefore independence, is also an important aspect of biopolitical citizenship.

Pandemics pose a particular challenge to the above formula of successful biopolitical citizenship. They unsettle established rules of how to perform immunitary virtue (Davis et al., 2021). Such illnesses transgress boundaries, contravening ordered relations (Douglas, 1966). Uncertainty about transmission, treatment and recovery, key features of the early stages of the Covid-19 pandemic, provoke ‘thoroughly old-fashioned kinds of dread’ (Sontag, 1990: 6). As put by Kristeva (1982: 69), ‘it is not lack of cleanliness or health that causes abjection, but what disturbs identity, system, order. What does not respect borders, positions, rules. The in-between, the ambiguous, the composite.’ The fundamental absence of knowledge - or nescience (Gross, 2007) - about Covid-19 when it first emerged produced conditions whereby standards of responsible biopolitical citizenship had to be re-negotiated in relation to emergent and uncertain scientific evidence.

Sontag, writing about the HIV/AIDS epidemic, highlighted mystery as an important component of novel illnesses. She argued that ‘any disease that is treated as a mystery and acutely enough feared will be felt to be morally, if not literally, contagious’ (1990: 6). This creates conditions where illness can be ‘deeply discrediting’ for an individual's identity (Goffman, 1963), fracturing social relations. Scambler and Hopkins (1986) categorise these fractures as felt stigma, where judgmental responses from others are imagined and anticipated, or enacted stigma, whereby relationships are deliberately altered in response to illness. Farrimond (2021) notes that, in a new pandemic, stigma is ‘highly dynamic and malleable’. The potential for fracturing of social relations is magnified in the context of a novel illness for which there are limited pre-existing standards of biopolitical citizenship to enact regarding prevention, treatment and recovery.

In this paper we take feelings of stigma in response to Covid illness as an analytical starting point for examining how citizens across the UK, USA, Germany and Japan navigated ‘responsible’ behaviour in relation to the ‘mystery’ of Covid. We explore narratives from the period in 2020 before vaccination or treatments for Covid became available. We interpret emotions as relational forces that serve to align ‘some subjects with some others and against other others’ (Ahmed, 2004, p. 117). We approach feelings resulting from illness as socio-cultural practices that structure interactions. We refrain from providing psychological definitions of the specific feelings of stigma and shame, instead emphasising their sociological qualities as moral signifiers of fractured interaction. Reflecting on shame, for example, Ahmed notes how it brings relationships between self and others to light: ‘shame feels like an exposure, it involves an attempt to hide that requires the subject to turn away from the other and toward the self’ (2014:103).

We argues that narrated experiences of Covid-related stigma and shame are revealing of public, institutional and personal discourses on acceptable biopolitical citizenship in an emerging pandemic. We ask how people operationalised emerging forms of ‘certainty’ about Covid-19 and to counteract mystery, and to what extent this helped them to resist stigma. Our aim is to explore how mystery about illness – in this case related to the novelty Covid-19 – compounds the everyday work of negotiating responsibility for health.

1.2. Responsible Covid citizenship across national contexts

This paper seeks to identify trends in Covid biopolitical citizenship across different country contexts. Different nations took different approaches to enrolling citizens in emergent Covid public health policy. In their comparative work on Covid pandemic governance, Jasanoff et al. (2021) outline two major modes of public health intervention taken in the early stages of the pandemic. In the first were a set of countries that ‘targeted the virus’. This was achieved through emphasis on limiting spread by national and international border controls, and foregrounding measures which put boundaries between citizens and the virus (i.e. personal protective equipment). In the second mode, countries focused on ‘targeting social practices’. This approach centred control of citizen bodies and behaviour through activities such as lockdowns and school closures. Each approach invokes vaccination, the former as a barrier to infection and the latter as a practice to be adhered to, though this paper addresses experiences of illness in 2020 when vaccines were still in development.

While both policy approaches manifest aspects of biopolitical governance, Jasanoff et al. observe that the social practice approach tends towards a higher level of individual responsibilisation and intrusiveness. Critiquing the social practices approach, Decoteau and Garrett (2022) examined the Covid response in Chicago, USA. They argue that the investment in monitoring social practice through the building of a disease surveillance infrastructure, which emphasised contact tracing and individual action, superseded efforts to address the social determinants of Covid susceptibility. Rangel et al. (2022) and Højme (2022) offer complementary insights, exploring how increased state powers exerted by the Canadian and Danish governments during the pandemic positioned individuals as responsible for avoiding Covid while following a biopolitical logic which prioritised some lives over others.

As these examples demonstrate, the initial measures suggested by national and international bodies for responsible citizenship in 2020 did not enable everyone to avoid catching Covid. Where social practices have been the main target of governance strategies, moral deviance has been attributed both to catching Covid-19 and passing it to others. Displaced and ethnic minority groups have faced particular blame (Roelen et al., 2020), and professions routinely exposed to Covid (such as health and care workers) have experienced scapegoating (White et al., 2020). Those who became ill were thereby subjected to a potentially ‘discrediting’ gaze from others (Goffman, 1963). However, public disclosures of being Covid-positive by high-status individuals, such as politicians and celebrities, complicate the notion that this illness necessarily equates to a ‘spoiled social identity’ (Goffman, 1963). Moreover, that sources of transmission were often co-workers, friends, or family added to the challenge of separating a responsible self from irresponsible others.

We build from this literature on national and individual pandemic responses, exploring citizen experiences of navigating biopolitical responsibility across the UK, USA, Germany and Japan. These nations are all liberal democracies which followed the ‘social practices’ disciplinary biopolitical approach to public health during the pandemic. Each state put in place formal guidance and/or legally enforceable rules during the pandemic delineating the key aspects of responsible Covid citizenship: social distancing, isolating when ill, and maintaining personal hygiene (see the appendix for further details on key public health messages in each nation). Each nation has different approaches to healthcare provision and operates under different welfare models. However, during 2020, the pandemic policies of the UK, USA, Germany and Japan broadly converged in terms of citizen access to healthcare services when severely ill with Covid and the provision of unemployment support benefits (Mäntyneva et al., 2022). The longer-term impact of differences in social support across nations are explored by Qureshi et al. (forthcoming – 2023).

We focus on accounts from people who were themselves ill with Covid during the first year of the Covid-19 pandemic, exploring their experiences of stigma at a time when Covid was a mysterious novel illness. Participants describe how they drew on liminal certainties in the form of national guidance and emerging scientific evidence to bolster performances of biopolitical responsibility. Through studying narratives from different national contexts we sought to identify similarities and differences in disruption to situated practices and etiquettes for managing the everyday performance of biopolitical citizenship. Starting from descriptions of felt or enacted stigma and/or shame, we examine the interactions through which these feelings were produced, thereby situating these in broader socio-political discourses.

2. Methods

2.1. Data collection

This was an interview-based qualitative study. Data collection occurred between July 2020 and November 2022. The interviews were collected using a comparable narrative and semi-structured approach. All researchers are members of the DIPEx International collaboration (Ziebland et al., 2021), and received the same training and support in interview methodology. Interviews were conducted at a time that suited the participant. Interviews were conducted online or via telephone. All were recorded on audio and/or video according to participant preference. Interviews lasted between 45 minutes and 165 minutes.

The first section of the interview invited participants to relate how they first became aware of Covid 19, their own experience of the illness and its aftermath. The second section included a semi-structured topic guide with a variety of prompts about how Covid had affected their health and wider aspects of their lives, communities, finances, work, education and family and interactions with health care services. We also asked about experiences of Covid illness disclosure. This interview guide was collectively developed by members of the DIPEx International collaboration in 2020.

2.2. Sampling

Within each country data collection teams aimed for maximum variation (Coyne, 1997) with diversity in geographical location, occupational social class, ethnicity, severity of illness, gender, household composition and age group. Recruitment was through a variety of routes including clinicians, social media, support groups and snowballing to encourage a wide variety of experiences and perspectives. Relevant research ethics approvals were gained in each country before data collection.

For the purposes of this paper, which addresses experiences of Covid in 2020, we included only interviews where people reported experiences of infection with Covid between March 2020 and December 2020. The total number of interviews included in the analysis for this paper was 103: Japan (14), Germany (26), the USA (22) and the UK (41). Interviewees ranged between 21 and 82 years old. Seventy-two interviewees were female, and thirty-one were male. Ethnic diversity was different across country samples: the UK sample was two thirds minority ethnic groups; the USA sample had one third people of colour; the German sample was mostly white European; the Japan sample was all Japanese.

2.3. Data analysis

Interviews were transcribed and the transcriptions were checked for accuracy. The initial focus of analysis was to examine interviews for accounts of stigma in relation to Covid illness. In their illness narratives, people often link their personal experiences to wider social contexts by talking about feelings of shame or blame. In each country's interview transcripts were imported into specialist computer software for organising textual data for coding (NVivo and MAXQDA). After collecting together all data relating to stigma, the research team in each country undertook a thematic analysis using the OSOP mind-mapping approach (Ziebland & McPherson, 2006) in which all researchers had received training. The researchers analysed their own interview data, in the original language. The researchers all had English as either a first or additional language.

All authors attended a series of group online analysis workshops between January and October 2022. Across eight workshops the data were compared, discussed and refined. At the outset of analysis we anticipated finding differences between the nations. After initial engagement with the data gathered on experiences of stigma we noted significant similarities despite national differences in policies, scale and phases of impact of the pandemic, acceptability of practices such as masking and touch, and cultural manifestations of individual vs collective responsibility. A sole difference of note is that Japan, which had comparatively few cases of Covid during the first year of the pandemic, was able to contain spread through guidance alone, unlike the UK, USA and Germany which all experienced periods of legally enforceable ‘lockdown’ restricting activity.

From here, we re-oriented our focus to emphasise the commonalities between the countries. We engaged with theories of biopolitical citizenship and undertook a further round of analysis to specifically study connections between fractured social relations and Covid illness in 2020. We re-examined data to explore expressions of responsibility in relation to Covid and how this impacted relationships. The questions guiding this further analysis, which followed the same OSOP method, were.

• ●What challenges did becoming ill pose for performance of responsible biopolitical citizenship?
• ●How did participants resist the stigma of ‘irresponsible’ biopolitical citizenship in their narratives?

Subsequent refinements to the line of argument were elaborated by sharing and modifying drafts, which included searching for any examples of deviant cases that contradicted the main findings. Analyses were iteratively tested with each country's dataset, informed by theoretical insights from the literature. Selected interview extracts were translated by the bi-lingual researchers in preparation for this article. Pseudonyms were used to protect participant anonymity. Later drafts were subject to internal review by members of the editorial team of the special issue to which this paper forms a part.

3. Findings

In the next three sections we explore how citizens who became ill with Covid negotiated their biopolitical responsibilities in relation to three key areas of emerging knowledge during the first year of the pandemic: the mystery of how they had caught Covid, the mystery of if they had transmitted to others, and the mystery of how long Covid illness should last.

3.1. Mystery of catching Covid

3.1.1. Responsibility paradox

States and international bodies issued public health directives for minimising the spread of Covid based on the existing scientific knowledge about coronaviruses. These directives focused on minimising social interaction and maintaining personal hygiene. In the UK, USA and Germany this involved periods of formal ‘lockdown’, characterised by ‘stay at home’ orders enforced with varying degrees of rigour, whereas the Japanese state relied solely on citizen self-governance to manage their relatively low rates of Covid infection. Across nations, performance of responsible immunitary citizenship (Brown & Nettleton, 2017) was strongly connected with being seen to adhere to these rules. Public figures who were seen to contradict guidance were often met with fierce condemnation (see appendix X).

In the context of these moralising discourses, it was a troubling mystery that participants who perceived they had abided by ‘rules’ also caught Covid. They encountered a responsibility paradox. Many participants' narratives of catching Covid focus strongly on defending their status as socially responsible, emphasising commitment to following guidance.

There was no way I could get infected. As a journalist [writing reports about COVID-19], I tried to work at home as much as possible. I avoided rush-hours and crowds. I always wore a mask. So I have no idea where I got it. (Japan – Aki)

Alice (USA) similarly discussed the contradiction of having complied with local guidance yet feeling responsible for their infection.

All of us who were following the rules and wearing our masks and washing our hands, like none of us know how we got Covid. [Um] But that doesn’t change the feeling that you feel like you, if, that you’re dirty because you got Covid. Like if you had protected yourself correctly, you wouldn’t have gotten Covid. (USA – Alice)

The feeling of dirtiness described reflects Kristeva's interpretation that (1982: 69), ‘it is not lack of cleanliness or health that causes abjection but what disturbs identity, system, order.’ That following the rules did not preclude sickness contributed to a feeling of a spoiled identity, particularly in moments of disclosure to others.

3.1.2. Navigating disclosure

Responsible citizenship, as dictated by government guidance, required that anyone infected disclose Covid to recent contacts. For people who were isolating, it was often necessary to tell workplaces and to inform people who could provide support while they were isolating. In these instances, disclosure was the ‘right’ thing to do. Despite this, disclosure could also be accompanied by feelings of shame, and imagined or enacted stigma from others (Scambler & Hopkins, 1986). Disclosure could be simultaneously perceived as an indicator of formerly irresponsible behaviours (which led to infection) and current responsible citizenship (through disclosing infection status to mitigate spread). Karishma, who caught Covid in the UK in early 2021, discussed struggling with concurrently feeling guilty and blameless when disclosing Covid to others.

Oh it was horrible, absolutely horrible, you feel so guilty having to tell them and even though everybody feels like, 'you didn’t know it’s not your fault' and we were following all the guidelines we were doing everything we were supposed to. (UK - Karishma)

A strategy for avoiding stigma was minimising disclosure to those it was strictly necessary to tell. German participant Marlene described how experiences of felt stigma influenced their decision to limit who they disclosed to.

We tried to let as few people as possible know that we had this infection, because we felt really ashamed as well … we did not experience stigmatisation because only our family knew about it and our friends and we had no extra contact with them. (Germany - Marlene)

Limiting disclosure to trusted others, in this instance, was perceived to reduce the need to defend performances of responsible biopolitical citizenship. An alternative approach for mitigating stigma was through wide, public disclosure. This served as an opportunity to perform and reinforce a positive identity. Aki, a journalist and a mother of two young children, discussed sharing her Covid experience in a newspaper.

I wrote an article on my experience with a byline. Some were concerned that I might receive abuse from the readers. But I thought writing anonymously would send out a message that infection must be kept secret. So I sought approval from my family members and the nursery teacher before writing that article.

In this example, while disclosure was made more public, the possibility of stigmatising responses was something that had to be negotiated in consultation with wider personal and professional networks.

3.1.3. Responsible and irresponsible infection

Disclosure immediately called immunitary responsibility into question (Brown & Nettleton, 2017), bringing the responsibility paradox into view. Francesca, a 33-year old female researcher from the USA who believes she caught Covid in March 2020 from work, reflected that disclosure was often followed by the question ‘how did you get it?‘:

There's always like that first question of like, ‘OK, you have Covid. Oh my god, how did you get it?’ Well, I don't know how I got it. Like [um] there's this kind of like flipping it towards like ‘it's your fault that you got like this sickness. What did you do that was stupid that made you get Covid?’ (USA - Francesca)

A common strategy for managing disclosure was to create distance between irresponsible activities, such as socialising, and build proximity to situations of responsibility which may have facilitated infection, such as caring for others. Those who perceived that they caught Covid through provision of acceptable activities reported receiving more positive responses from people they disclosed to. Gita, a care home manager in her 40s from the UK, believed she caught Covid from a care home resident. She reflected on her changing feelings about this:

Initially, I was hugely embarrassed. I didn't want to tell people. I thought, it's a dirty word and it's not one to be bandied about. And then actually I changed my mind about it because the reception I had from those people that I did tell was, you know, one of full empathy, sympathy and understanding. I think maybe because of the way I got it or I felt I got it. (UK - Gita).

While this participant was initially ‘hugely embarrassed’, having felt she had failed in her immunitary citizenship, her feelings were shaped through interaction. Imagining stigma yet having received a sympathetic reception from the people she told, she changed her mind about Covid being fundamentally dirty. Positive responses created the possibility that some infection routes may be morally acceptable while others remain transgressive.

Additional data demonstrate how acceptability only applied when connected with adherence to performative measures of responsibility. Noah, a German participant, described how they were characterised as ‘the Corona fool’ in their family, experiencing enacted stigma from relatives for catching Covid in relation to their being ‘still reasonably sociable’ and not having ‘isolated myself completely’. An excess of social interaction, even when this was legally permitted, was a common thread of irresponsibility connected with imagined or actual social fracture across countries. Sadao, a Japanese office worker in his 50s who believes he caught Covid in a noodle shop where he ate lunch, recalls people teasing him and assuming he had gone to the ‘nightlife district’. Such areas had been identified as high-risk of infection.

Blaming ‘irresponsible others’ was another way of minimising the impact of Covid ‘spoiling’ identity. (Goffman, 1963). For example, Alice, a 42-year-old health care worker from the USA who believes she caught Covid at work, differentiated between unpredictable situations where you might catch Covid, such as the workplace, and situations where infection was more probable. She positioned infection as connected to reckless, ‘really stupid’ behaviour. Like you go to a party mask-less, and you make-out with ten people, and then you get Covid’. Kei, a Japanese woman in her 60s who believed she caught Covid while travelling to work in a customer service centre, similarly created distance between herself and irresponsible others. She described strong condemnation of those who caught Covid socialising

According to the nurses, many of the male patients getting admitted [to the Covid ward] didn't follow the non-smoking rule. Many of those patients caught Covid at places where it was considered unwise to visit at the time, such as Pachinko parlors [slot machine gambling halls]. So me and another patient spoke harshly about them "We should just let those people die!" They had such a low awareness of the pandemic. They had gone to Pachinko parlors or to bars to drink alcohol and got infected. We heard nurses complaining, "Why do we have to take care of those people who never listen to us?" I truly sympathized with them. (Japan - Kei)

Here a connection is made between multiple forms of perceived irresponsibility - Covid, smoking, gambling, drinking alcohol and not following guidance. While emphasising a contrast between responsible and irresponsible citizenship served to absolve the narrator, it could also serve to reinforce the penalties of being considered irresponsible. In this instance the consequence was others were positioned as less deserving of care.

In the UK, Germany and the USA, a further challenge in navigating the responsibility paradox was that the boundaries of what constituted responsible or irresponsible behaviour changed in accordance with changing guidance as lockdowns were lifted or reinstated. Adherence to national guidance offered an identifiable route towards socially performing responsibility, albeit proving fallible for avoiding illness. Changing rules created additional work for citizens in navigating rapidly changing expectations of responsible biopolitical citizenship (Davis et al., 2021).

3.2. Mystery of onward transmission: inconvenience and harm

3.2.1. Navigating liminality of infection

Another mystery that participants navigated was the potential of having transmitted Covid to others. In the first year of the pandemic, before vaccination became widely available, Covid illness was strongly associated with the potential to cause harm. In instances where participants told recent contacts about potential exposure to Covid, they were placed in a liminal period of not knowing whether others had caught Covid from them. Moreover, each country issued guidance about actions to take following exposure, including testing and isolating. In addition to navigating perceptions of irresponsibility, this added a burden of having inconvenienced others.

Testing offered a route to foreclose uncertainty about transmission. The UK and USA made provisions for free access to testing in mid-2020. In Japan and Germany, people had to pay (or partly pay) for tests themselves. As well as the potential of having passed on Covid, this led participants to feel guilt at having incurred costs for people they had been in contact with. German participant Noah discussed being criticised for having caught Covid from ‘irresponsible’ socialising. He felt his experience of enacted stigma was worsened by incurring costs for their family.

It was shit. I just managed to reap the first shit storm in the family WhatsApp group. Yes, it was also really unpleasant. You really have to go up to everyone and say to them, "Hey, you have to do this 81-euro payment test now”, theoretically. “Because you saw me”. Before that you might also be a ticking time bomb. That was just very unpleasant. (Germany – Noah)

Noah describes the double burden of surfacing the possibility that others could be infected - a ‘ticking time bomb’ – and requiring others to pay to get tested. In other instances, participants reported kind responses about others incurring costs through testing. In Japan, Sadao discussed the response from his team at work:

The eight people who worked under me were all identified as close contacts and had to take a PCR test. I found out later that the cost of hospital visit for the testing differed depending on where you lived. In some municipalities, you had to pay the consultation fee [approximately six euros] but the test itself was free of charge. While I didn’t infect them, they had to spend extra money. Although it wasn't a large amount, I offered to pay them back. But they all declined the money saying: “We can't take money from someone who got infected, the same thing could happen to us tomorrow.” (Japan - Sadao)

Sadao highlights that a potential source of social disruption – that colleagues had to spend extra money on testing - was not minimised by the absence of infection. That his colleagues could also be in the same situation meant that they did not enact stigma towards Sadao.

Another potential consequence of responsible citizens disclosing Covid was that recent contacts had to isolate. High profile incidents of public figures breaching isolation rules were met with public condemnation (see appendix X), creating a strong moral narrative about responsibility to follow quarantine rules. Policy differed between countries about how long known contacts had to isolate for across 2020, reflecting scientific uncertainty about the infectious period of illness. Where this lasted several days, participants felt guilty for having to ask others to stay at home. Shakila, a UK child-minder, had to ask the family of a child she cared for to isolate when she discovered she had Covid. She described conflict in interpreting her responsibilities:

But you do feel, I don’t know, I don’t know about other people … do you need to feel guilty about it? Because I don’t know? Sometimes it was like ‘oh god it’s because of me she has to isolate’ kind of a thing. But then it’s not my … it’s not anybody’s fault really, is it? (UK - Shakila)

The questions she asks – ‘do you need to feel guilty about it?’ and ‘it's not my, it's not anybody's fault really, is it? – indicate a broader struggle in understanding and performing responsible Covid citizenship. Despite having internalised the broad responsibilisation messages of immunitary biopolitics (Brown & Nettleton, 2017), Shakila recognises the limits of her individual control over the infection. Faced with the paradoxes of having followed guidance but caught Covid, and taking the ‘right’ course of action in disclosing to others despite ultimately causing inconvenience, she is left questioning the need to feel guilt. The mystery of Covid here creates a liminal space, where no fault can be apportioned, so no social relations are fractured. Suguru, a Japanese newspaper correspondent in his 40s, discussed the benefits of this liminality in more detail:

I feel I'm lucky that I don't know where I got infected. If I had known from whom I got it, even though I know in my head that it's not his fault, I am not sure if I could be without any negative feelings toward him … If someone in the workplace had contracted the virus from me, although I know that my colleagues are not the type of persons who would condemn me for that, I would have felt quite uneasy about how they would see me. Especially if my colleague got infected and passed it onto his family members, I wonder if he would treat me in the same way as before. The thought of it makes me feel miserable. It was a silver lining that I didn't infect anyone except for my wife. I feel that I was really lucky. (Japan - Suguru)

Suguru describes the struggle of how he would view the person who transmitted Covid to him, and feels ‘uneasy’ in imagining how his colleagues might view him if he infected them. Despite rationalising that blame was diffuse – ‘I know in my head it's not his fault’ – he could not rely on either himself not having negative feelings, or his colleagues treating him the same.

3.2.2. Distancing from blame

Liminality was easier to navigate when there was limited evidence of physical harm through onward transmission. Participants could emphasise they had taken responsible actions in informing others and minimising further spread. The responsibility paradox became harder to negotiate when there was a perception of harm caused as a result of infection. German participant Kira discussed how it ‘exhausting’ trying to apportion blame, highlighting the labour of determining responsible behaviour in uncertain times:

I found it interesting that many things revolved around the topic of guilt, who infected whom, and we also talked about it a lot in the house, which was very exhausting. At some point we said, “that's enough, it doesn't matter who is to blame, it's just the way it is and in the end there is no blame”. But it often felt that way, and it was the same with my colleagues at work, one of them was in hospital and had to be given oxygen, the other or the other two, I infected three in total, the other two had no symptoms at all. Of course I thought about whether I was being too careless. (Germany – Kira)

In this example, they describe how they resist stigma. The decision that ‘there is no blame’ was presented as collective, reflecting a generalised social responsibility. However, the participant was unable to fully distance themselves from concerns about appropriate immunitary citizenship (Brown & Nettleton, 2017), retaining an internalised concern about their personal responsibility towards others. In the context of some colleagues becoming hospitalised, they questioned whether they were ‘too careless’. Another German participant, Emma, described struggling to position herself as morally responsible in the face of enacted stigma from friends:

And that was really difficult for me. To distance myself from it and to say, "Yes, well, that's simply a disease. And it's not my fault that I'm infected". And I would say that was the greatest burden for me. That I had the feeling that I could have infected others without noticing it. And then, thank God, it wasn't like that. My contacts did not test positive. And yet, for the first time there was such a burden and also the accusations, from which I could not separate myself so well. (Germany – Emma)

In this example, the participant describes trying to create distance from enacted stigma, but not being able to easily ‘separate myself’ from the irresponsibility attributed to them by friends. They present another paradox – that those infected should not be shamed, but those who pass the infection should. This created an irresolvable responsibility given the possibility of transmission before Covid manifested in symptoms or a test result. Her proximity to the identity of someone who spread Covid, despite this being accidental - something she did ‘without noticing’ - was her ‘greatest burden’.

This emphasis on the violence of being a transmitter appeared in other accounts, where participants struggled to distance themselves from narratives of personal responsibility around transmission, even in circumstances where social interactions were permitted. German participant Lina described that she ‘almost experienced myself as a perpetrator’, and Marie from the UK suggested that their long-term loss of smell was a ‘kind of punishment’ for having socialised with other students at university. Koichi, a Japanese nursing home caretaker in his 50s, discussed his anxiety at having potentially infected the residents in his care:

It was really shocking when I was confirmed PCR positive. I knew that I would be OK, but it weighed heavily on my mind. What should I do if I had infected my long-time clients? … I got a message from the clients who became my close contacts. …While they told me “Don’t worry. The test result was negative,” I still felt guilty for causing trouble for them. (Japan - Koichi)

Some participants reported examples of strong enacted stigma from others about being a potential source of infection. The ambiguity around transmission created more possibilities for blame, and therefore more opportunities for social fracture. A young Japanese woman, Sora, reflected on this. She had stopped seeing a friend who continued working despite being exposed to Covid, explaining ‘even if you were really close to each other, catching Covid or the differences in values regarding Corona can lead to the breakdown of personal relationships’. Shino, another Japanese woman in her 50s who worked in hospitality, described ceasing contact with someone who accused her of infecting her own father:

Considering the limited contact I had with my dad, I wonder why he got infected. …Our parents often went out to eat without wearing a mask because of my mom's dementia … I knew that it was hard to determine the source of infection, but someone said to me: “So he (the father) got it from his daughter.” That was really shocking. So, I don't talk with that person anymore. (Japan - Shino)

Ongoing scientific uncertainty about Covid transmission perpetuated mystery. This created a liminal space in which participants could be blamed, or blame themselves, for irresponsible Covid citizenship, while also finding opportunities to distance themselves from shaming discourses. Harm that materialised as inconvenience or illness was harder to separate responsibility from, and created more possibility for social fracture.

3.3. Mystery of duration of infection

3.3.1. Experiencing and resisting enacted stigma

Another aspect of responsible Covid citizenship was performing appropriate recovery. Citizens were required to isolate themselves while unwell, re-joining society when they were no longer a risk. During 2020 all four countries invoked a period of mandated quarantine, which was determined by emerging knowledge about the duration of the period of infectious illness. This did not translate directly to easy social re-entry. The Japanese participant Shino gave an example of being removed from a paediatric clinic several months after recovery.

3 months after discharge, my second son got a bad cold, so we went to see his paediatrician. When I told her that we had been hospitalised in April because of Covid, she shouted "What?!" holding her arms up to keep a distance from us. She went on to say: "Why didn't you tell us beforehand? You know this is a paediatric clinic, we have babies here!" She condemned me fiercely in front of others. My mind went blank … She made us leave from the backdoor and I left crying. (Japan - Shino)

In addition to being expelled from the building, notably via the backdoor, this experience of enacted stigma was amplified by it being public. That the paediatrician condemned this participant fiercely in front of others served to exacerbate the message that they had behaved irresponsibly.

Drawing on sources of perceived scientific authority enabled some participants to defend themselves against this form of enacted stigma. Karishma, a UK participant who worked as a child-minder, described challenging a parent who wanted to wait longer than the two-week period of quarantine before her child returned to Karishma's home.

‘She messaged me, she said you know, “I am glad to know you are feeling better but rather than starting you know this next week we’ll wait a week more just to make sure” and I said to her “I don’t quite like the tone of the text” because she said “just to make sure the virus has left your house”. And I said “what does that mean?” I mean how, it doesn’t make sense. So I told her, I said “look I am not going to take another test”. I said because, I said “I don’t know if you are aware or not, but the virus can stay in my body for as long as 90 days without it being infectious after my 10 days infectious period is over so there is still a chance if I can take a PCR test my test will come back as positive even though I am no longer infectious.” (UK - Karishma)

She invokes emerging knowledge about Covid infectiousness to challenge what she perceived to be an accusation of irresponsibility. This provides an example of how mystery amplifies the work of navigating responsible social re-entry following illness, creating points of conflict in social interactions.

3.3.2. Ongoing symptoms and social fracture

Disputes about ongoing infectiousness could be remedied via discussion of emerging scientific knowledge in some instances. However, this was harder when participants were manifesting ongoing symptoms. The state mandated period of quarantine did not consistently match with duration of symptoms for all participants, which led to instances of enacted stigma for those who returned to social life but remained unwell.

In Germany, citizens were officially approved for release from quarantine by their local health department after completing their mandated period of quarantine. Uncertainty about how lingering symptoms connected with ongoing infectiousness led to stigmatising interactions. German participant Helene, for example, felt she was treated like ‘a leper’ by her GP when she sought a sicknote because they were still ill after completing their quarantine.

They told me to come and it would be handed to me at the door. And yes, I called there as I was standing in front of the practice, I said "I'm standing downstairs now". Someone brought down the sick note. And so for me it felt like throwing a dog a bone. They really did put the sick note down, far away. I was allowed to take it. So it wasn't good for the mind at all … Then I went [to the doctor] again in the third week. You were really treated like a leper. I was only let in after the last patient had really left. And I was a few minutes early. Then I was sent away again. And it was very, very strange. (Germany – Helene)

The perceived misalignment of having been released from quarantine but still having symptoms produced strong reactions, reflecting Douglas' (1963) discussion of the perceived danger of ‘matter out of place’. This participant emphasises being physically separated from others – being seen only at the door, or seen after other patients have left – and being dehumanised – feeling like a dog being thrown a bone. In this and other narratives, participants challenge their status as ‘out of place’, clarifying that they had complied with official guidance and, in the German case, drawing on the authority of state officials for re-joining society.

Coughing, a visible and audible sign of potential risk, was a particular source of discomfort in social interaction following illness. In the UK, Margaret - a nurse in her 40s who caught Covid at a sports event - described enacted stigma from a friend because of a lingering cough.

I’d been isolating for almost three, well I’d had the virus almost over three weeks, and I wanted to watch a swim and I knew my friend was going. I said “Oh, can I, shall I meet you there?” And she was like, “I don’t want to meet you”, she said, “you’re still coughing”. And I said, “But I, I’ve had it weeks now, I’m allowed out.” No she just wouldn’t, she just wouldn’t. And I cried. (UK - Margaret)

Antonne from the USA was similarly avoided after he was no longer infectious, but sympathized with the family member who wanted to avoid contact.

And I would you know, have meetings with family you know, we go and meet up at a park or something for somebody's birthday and everybody's wearing masks. And none of them had seen me since you know, [uh] you know, since the Covid. And you know, everybody wants to know about it, and you know, I'm happy to let them know that I'm doing fine. And then there were [uh] one cousin didn’t want to be near anybody. She wanted to be there, but you needed to stay like 10 feet away from her. You know, because she was so like scared. And I didn't take offense to that. I didn't. I had; I was like. And she's like, “I'm sorry, I'm so sorry.” And I said, I go, “No, you don't have to be sorry, you're concerned.” I'm like look, “I had it, I wouldn't wish it on anybody,” you know. “If you want me to stay 10 feet away and just wave at you and say hi, I'm okay with that.” (US - Antonne)

Social fracture in these examples was exacerbated by fear of infection. Despite emphasising responsible behaviour, the presence of persistent symptoms generated provoked anxieties that led to disrupted interactions. Where participants were not able to resist stigma, they felt strongly shamed by others' responses.

4. Discussion

Across this paper we have examined the emergence of Covid biopolitical citizenship through narrated experiences of felt or enacted stigma in the first year of the pandemic across the UK, USA, Germany and Japan. Uncertainties around how it could be caught and transmitted and duration of illness generated ambiguities that troubled efforts to perform responsible immunitary citizenship as dictated by emerging state guidance (Brown & Nettleton, 2017). Our findings build on previous work demonstrating the labour of performing oneself as morally responsible in order to resist stigma associated with illness (Ayo, 2012; Brown & Nettleton, 2017; Sontag, 1990). Our work makes a novel contribution through examining this in the context of the mysteriousness of Covid.

Participants across nations negotiated multiple paradoxes: following guidance yet catching Covid; being responsible by disclosing Covid to others yet causing distress and inconvenience; fulfilling isolation requirements yet being excluded from social life. A feature of each paradox is that adherence remains a defining feature of responsible citizenship, in this case adherence to actions that could limit transmission. An interpretation of this is that, in the context of over-burdened health systems, performing adherence was perceived as a necessary action to demonstrate entitlement to care in the event of serious illness. As argued by Decoteau (2013), where resources are limited, rights to protection implicitly require citizens to embody certain state processes, in this case following state pandemic guidance.

An aim of this work was to further understand how certainty was operationalised to resist stigma. Our findings highlight the liminality of certainty in the context of new and emerging forms of biopolitical citizenship. The rapidity of change in science and global policy-making both helped and hindered resistance to stigma. As Petryna highlights in the context of citizen claims to state support in the wake of the Chernobyl disaster, the indeterminacy of scientific knowledge can be both ‘a curse and a source of leverage’ (2004: 262). Presenting oneself as responsible – in this case through adherence - was easiest where there was seen to be certainty through emerging scientific knowledge, or where official policy permitted actions. However, certainty was unstable. Rapidly changing guidance required social negotiation, and could lead to fracture where interpretations of responsibility differed. Ambiguity around key aspects of Covid - such as routes of transmission - was a double-edged sword. It enabled citizens to distance themselves from having caused harm to others, but ultimately left attribution for harm unresolved. That the people who could be ‘blamed’ for infecting others were usually friends, neighbours, family, or co-workers complicated narratives of blame and shame, making uncertainty around Covid preferable in some circumstances. In these instances, citizens employed ‘non-knowledge’ (Gross, 2007), that is, knowledge about what is not known, in order to limit blame. These paradoxes draw attention to the fragility of emergent knowledge, and its limitations when used as a source of stability during global crises.

The experiences of blameful and stigmatising responses across the different nations included in this study were remarkably similar. This is perhaps unsurprising given that each state adopted similar pandemic management approaches which targeted citizens rather than the virus (Jasanoff et al., 2021) and, in the first year of the pandemic at least, offered comparable social support to citizens (Mäntyneva, 2022). Differences in broad governance structures did not impact strongly on stigma on the level of social interaction. An area of contrast was in the inconvenience resulting from different testing and isolating requirements, which could exacerbate tensions and increase possibility of social fracture. The overall commonality across countries highlights the issues in responsibilisation of individuals for their health in the context of profound uncertainty.

A strength of this work is that we were able to draw on comparable data collected using common methods. The iterative analytical approach taken enabled a thorough engagement with the data across countries. There are nevertheless limitations to this analysis. Data were collected at different time points during the pandemic. Given the speed of change in understanding of Covid, this may have influenced how participants accounted for responsibility in relation to illness. Moreover, stigma itself may have influenced who felt comfortable to participate in an interview about experiences of Covid, and also what participants chose to disclose. During interviews we also did not explore solidarity and empathy in the same depth as stigma.

This analysis presents considerations for future public health crises. There is a tension between the uncertainty of an unfolding pandemic and the certainty required in developing public health messaging that dictates responsible biopolitical citizenship. The framing of responsibility at a citizen level around adherence to measures that prevent transmission has consequences for feelings of shame when illness is passed on. Where lived experiences of illness differ from what is promised from following guidance, this can result in confusion and stigmatisation. Further research could examine how pandemic public health strategies could incorporate more nuanced communication of certainty as liminal and unstable and what impact this has on the designation of responsible biopolitical citizenship.

Funding

This work was supported by the Federal Centre for Health Education on behalf of the Federal Ministry of Health in Germany, (Ref.: Z2/32.30.30/21) the Economic and Social Research Council (ES/V016032/1) in the UK, and a Department of Family Medicine and Community Health Small Grant from the University of Wisconsin-Madison in the USA.

Author statement

Anna Dowrick - Conceptualization; Data curation; Formal analysis; Investigation; Methodology; Project administration; Roles/Writing - original draft; Rachel Grob - Conceptualization; Data curation; Formal analysis; Funding acquisition; Investigation; Methodology; Akiko Sawada - Data curation; Investigation; Methodology; Writing - review & editing; Anne Thier - Data curation; Investigation; Methodology; Writing - review & editing; Christine Holmberg - Data curation; Investigation; Methodology; Writing - review & editing; Rika Sakuma Sato - Conceptualization; Data curation; Formal analysis; Investigation; Methodology; Writing - review & editing.

Uncited references

Ahmed, 2014.

Declaration of competing interest

The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper.