Narrating Resistant Citizenships through Two Pandemics

Abstract

Covid has intensified inequalities in the UK, particularly for those already living with structural disadvantage, and despite community and popular resistance to those losses. Covid has also disproportionately affected people with HIV, especially those already living with multi-dimensional inequalities. However, many people with HIV have, as they have done before, made strong and often successful efforts to resist and to restore or reconstruct their citizenships, in opposition to dominant, dispossessing discourses during Covid times. A narrative approach offers a means of mapping these citizenly technologies. This article draws on a 2020 study conducted with 16 people living with HIV in the UK. The study explored, through telephone semi-structured interviews, the health, economic, and psychosocial resources with which these participants lived with HIV and how Covid has impacted those resources. Narrative analysis showed losses of HIV and other health resources, constituting reductions in health citizenship, resisted largely by reconstitutions of alternatives within the HIV sector; losses of economic citizenship, despite oppositional, anti-political attempts to retain it, and of psychosocial citizenship, in spite of family and friendship networks; resistant, ‘alter’ development of renewed HIV citizenships; and across fields, resistance by complaint. This study indicates that ‘de-citizening’ citizenship losses are likely to also affect other groups with long-term conditions, illnesses, and disabilities. Resistant ‘re-citizening’ technologies, while important, had limited effects. The study suggests potential future resistant effects of repeated ‘complaint’ about Covid-era citizenship losses, and the more general significance of histories of dissent for future effective resistance.

1. Introduction

1.1. Covid, Political Resistance, and HIV Narratives

What are the actualities and possibilities of political resistance, broadly understood, within the Covid pandemic? At first, ‘resistance’ sounds simple. As social movement scholars (e.g., Kaun and Trere 2020) emphasise, resistance is a relationship: it involves responding to a force. More complexly, political resistance involves contested engagements, encompassing, as Chantal Mouffe (1992) describes, the subjects’ relations and actions across many fields. This article examines everyday political resistance (Campbell and Cornish 2021) to a dominant UK government Covid discourse which exerted strong forces on people’s lives in 2020. The article argues that narrative research can provide an extensive and nuanced understanding of such everyday political resistance. To build such understanding, it is helpful to turn to people with narratable pandemic knowledge—in this case, people living with HIV. People with HIV have lived through another uncertain, complex, and often-denied pandemic, which deepened inequalities and restricted citizenly entitlements, and which required decisive, community-driven public health interventions. Many people with HIV are also accustomed to narrating, not least to themselves, their lives with a condition whose medical, psychosocial, and material complexities escape unified description or theory but appear intricately and fully in narratives. Consequently, people with HIV have a lot to say about Covid (e.g., Petretti et al. 2021), and that was a primary reason for this study.

HIV narratives have often articulated resistance to powerful political discourses which minimised or marginalised HIV and erased or restricted resources to deal with it. Such resistance won many gains—for instance, getting HIV seen as a health, not a moral issue, and expanding effective treatment to the majority world (e.g., Mbali 2013; Robins 2006; Epstein 1998; Powers 2017). However, these HIV narratives also display resistance’s failures—for example, to be inclusive, politically effective, and sustainable (Nguyen 2010; Padamsee 2020; Whiteside and De Waal 2004). Covid narratives, too, generate effective resistance alongside failures. For instance, long Covid stories, testifying to long-term viral effects initially dismissed or psychologised by many doctors, have generated gains in medical treatment and social protection which nevertheless remain limited (Alwan 2021).

To address this ambivalence, this article begins by considering the successes and failures of political resistance, understood broadly, during the UK Covid pandemic. It next sketches histories of resistance within the HIV pandemic; political resistance’s relation to citizenships; and the value of narrative research for exploring citizenly resistance. The article then describes a study of 16 people with HIV’s narratives of their lives within the two pandemics, the everyday resistant citizenships those narratives articulate, and the implications of such resistance stories.

1.2. Dominant Early Covid Discourse and Resistance to It

What, in the early days of the UK Covid pandemic, was there to resist? Occasionally, UK government agencies talked about reducing Covid prevalence and mortality to low levels, maintaining health services, and protecting people’s livelihoods and wellbeing—aims broadly in line with those articulated by public health voices at every level, from community groups to the World Health Organization (WHO). At the same time, local government, education, social care, business, and medical subfields—for instance, respiratory and emergency medicine, virology, epidemiology, and immunology—generated field-specific discourses. However, prior to vaccine rollout, the UK government also articulated a complex, consistent and overarching discourse: ‘perform “care”, minimise Covid, profit’. This Foucauldian formation of knowledge, practice, and power was an early sub-discourse of the much larger ‘live with’ Covid discourse that Mark Davis explicates in this special issue, across countries, and over a longer timeframe. It proclaimed government care, particularly for the old; support for the UK’s free National Health Service (NHS); public financial assistance as needed; and efficient Covid mitigation, testing and tracing. In practice, this discourse allowed morbidity and mortality at just-acceptable rates; disregarded rates among the old, ill, disabled, key workers, and racialised groups; overburdened the NHS, encouraging health privatisation; nepotistically awarded personal protective equipment (PPE), testing and track and trace service contracts to inefficient, expensive companies; and promoted economic ‘opening up’ at the cost of infections and lives (Sim and Tombs 2022). The strategy generated mortality and morbidity rates and health, economic, and psychosocial harms exceeding those in most other rich countries (Marmot et al. 2021). The normalised chaos it supported, dispersed and concealed responsibility.

A likely outcome was resistance to this discourse. In the pandemic’s first year, polls showed British people consistently saying that the government had mismanaged Covid, delivering corruptly, unfairly, and poorly (Barker and Russell 2020; Pew Research Center 2020; Watterson 2020). Within the global picture of declining ‘trust’ in government (Edelman 2021), Covid-era UK confidence in government fell (Wright et al. 2021). Stable ‘trust’ became local, restricted to employers and NGOs, business and media (Edelman 2021; Goldstraw et al. 2021).

However, until early 2022, when polls swung away from politicians seen as partying against Covid mitigation rules while voters followed those rules at great economic and personal cost, perceived UK government failures hardly changed voting intentions. Political resistance looked small-scale, often rooted in denialism, libertarianism, and right-wing populism rather than calls to take Covid more seriously and manage it responsibly. Covid-safe in-person collective action seemed unsafe, and digital activism limited (Goldstraw et al. 2021). Covid’s continuing health, psychosocial and material impact on people’s lives often made resistance other than everyday survival appear impossible.

At the same time, resistance to the UK government’s dominant Covid discourse and its results manifested in multiple, under-acknowledged ways. We can understand this resistance, following Ghassan Hage’s (2015) description of ‘alter’ forms of politics, as alter-resistance. Such resistance, because rooted in realities alternative to those of hegemonic state discourses, is frequently underestimated. For instance, in Covid-inflected circumstances of vulnerable health, older age, isolation, low income, and food, energy, housing and transport poverty, day-to-day survival was indeed itself resistance. Most people’s Covid responses were consistently careful and egalitarian, differing radically from the government’s ‘pandemic fatigue’ expectations (Reicher and Drury 2021) and laissez-faire policies (ONS 2021). Covid-era digital organising, though not fully accessible, was inclusive and empowering (Goldstraw et al. 2021; Westgarth and Pasquarelli 2020); campaigns around Long Covid are good examples (Alwan 2021). Local mutual aid groups, horizontally organised, were novel and effective political forces in the first lockdown (Chevee 2021), framing politics as care rather than protest.

Such alter-resistance coexisted with what Hage (2015) calls oppositional or anti-politics, which operates within the realities of dominant discourses. For example, mutual aid groups also worked against the dominant Covid discourse’s betrayal of hegemonic citizenly principles—rights, neoliberal efficiency, and resistance itself (O’Dwyer et al. 2022). Civil society campaigns criticised inadequate social protection and fought to restore food and fuel security (Child Poverty Action Group and Church of England 2020). Health and social care workers’ concerns about low pay settlements, understaffing and safety concerns—largely supported by public opinion—pushed the government to pursue non-UK healthcare worker employment, and—briefly—to support safer practices.

This article addresses how such qualified yet effective resistance is narrated by people with HIV, who bring pandemic expertise to Covid as they live through ‘pandemic’ a second time.

1.3. HIV, Covid, and Resistance

Currently, the HIV pandemic gives cause for optimism. People with HIV look forward to a healthy, normal lifespan with rewarding work and relationships. Well-treated HIV is untransmissible, something that facilitates and even liberates people with HIV’s lives.

Moreover, many people living with HIV are affected by Covid just like anyone else.

However, people with HIV also have double the chance of dying from Covid, a risk related to poor health due to HIV and/or co-morbidities, being male, being older, being poorer, and belonging to Black, Asian, and other non-white ethnicities (Ambrosioni et al. 2021; Bhaskaran et al. 2020; Brown et al. 2022; Dhairyawan and Chetty 2020). Such socio-economic inequalities, which also shape the UK Covid pandemic overall, negatively impacted the lives of people with HIV before Covid (HIV Psychosocial Network 2017; National AIDS Trust 2014). Moreover, Covid, while it did not immediately impact UK HIV treatment, impeded prevention, testing, checks and treatment for HIV-related and other conditions, and ART adherence (Ambrosioni et al. 2021; Petretti et al. 2021). It reduced psychosocial support and increased isolation and mental health problems—issues which already particularly affected people living with HIV (All-Party Parliamentary Group on HIV/AIDS 2020).

Just 0.1% of the UK population is HIV positive. But their Covid-era medical, psychosocial, and material difficulties parallel those of the 19% of UK people (15 million) living with a long-term condition, 18% (14 million) living with disabilities, and 3.7% (3 million) considered clinically extremely vulnerable people. However, people with HIV also live with a long history of national and global resistance to dominant health discourses, which they bring to the new pandemic.

Within the pre-Covid HIV pandemic, as within the Covid pandemic now, political resistance was nevertheless limited—sometimes, as with Covid, by governance failures and denialism (Botel 2020; Whiteside and De Waal 2004; Padamsee 2020; Edelman et al. 2020). Again, as with Covid, political resistance was later muted by dominant discourses that, in a time of effective biomedical solutions (Squire 2013b) naturalised HIV’s endemicity, idealised biomedical solutions, and marginalised ‘left-behind’, less-powerful groups—in the case of HIV, gay men, women, trans people, drug users, sex workers, and people on low incomes (Squire 2013b; UNAIDS 2015). Such groups constitute a majority of those doing less well with HIV and now, Covid.

Despite these limits, socio-political HIV resistance to dominant, HIV-minimising discourses has often been extremely effective. As with Covid, it both built on earlier traditions—those within civil rights and anticolonial struggles, feminisms, and LGBTQ rights—and generated new forms of activism (Mbali 2013; Robins 2006; Epstein 1998; Powers 2017). Such new HIV resistance in turn shaped later resistance in health (Daftary et al. 2017) and other fields of injustice (Crimp 2011). Some of this resistant force was, in Hage’s terms, anti-political. For instance, HIV activists gained medical recognition for women’s ignored symptoms and campaigned against policies that assumed African countries could not roll out HIV treatment. At other times, such resistant force was tangential, creating new, ‘alter’ possibilities of living with HIV. Such ‘alter’ resistance generated models of care as politics (Catalan et al. 2020); changed relations to bodies, identities, and the biomedical state (Young et al. 2019); and operated quiet, hidden, ‘slow’ activisms (Campbell and Cornish 2021; Mulubale et al. 2021).

Drawing on these histories of doubled anti- and alter-resistance, UK efforts to address HIV during Covid times have reconfigured and strengthened, (Petretti et al. 2021). HIV testing, treatment and support have extended to digital as well as face-to-face services. Researchers and activists have reanimated HIV history to interrogate Covid-era criminalisation and individualisation of risk, pleasure and safety, and to point up the importance of open discussion and collective solutions (Garcia-Iglesias et al. 2021). This article explores whether and how people with HIV are generating such HIV-informed resistance to dominant Covid discourses within their everyday lives.

1.4. Understanding HIV and Covid Resistance through Narratives of Citizenship

A useful approach to HIV and Covid alter- and anti-resistances and their limits may be to consider the citizenships through which people live and resist the pandemics. Activists and researchers in the HIV sector have gone beyond legal and political senses of citizenship, building on broad social justice approaches to citizenships, including those within feminism and anti-racism. The health, biopolitical, economic, and psychosocial citizenships of people with HIV that they describe are active, contested and equivalent, differentiated rather than exclusionary or inclusionary, and inhabited by multi-dimensional inequalities (Lister 1997; Mouffe 1992; Mulubale 2020; Nguyen 2010; Paparini and Rhodes 2016; Robins 2006; Squire 2013b; Young et al. 2019). Such differentiated citizenships can help us explore resistant and hegemonic discourses of pandemics; for citizenships are socio-political technologies traversing discourses (Behrent 2013), linking identity and rights to everyday lives as well as to broader discursive formations. This framing of ‘citizenship’ has been part of campaigns for women’s reproductive rights and trans people’s gender-affirming treatment rights—as well as people with HIV’s rights to medical treatment and socio-legal equity. Current assertions of the rights of people with long Covid, and of people with disabilities, long-term health conditions, and immunosuppression in situations of high unmitigated Covid prevalence, might similarly be seen as claims on citizenship.

Since 2010, the UK government has implemented cost-cutting ‘austerity’ measures that have eroded health, economic and psychosocial citizenships—losses that have powerfully affected people with HIV (HIV Psychosocial Network 2017). Covid has the potential to further exclude people with HIV from citizenships. People with HIV are now subject to increased NHS constraints that render them lesser health citizens. Those on low wages or benefits face the cost-of-living increases generated by Covid, alongside Brexit and European conflict. Ongoing high-prevalence Covid further compromises people with HIV’s health, economic and psychosocial citizenships, and their rights to claim them. This article considers how people with HIV may restore or reconstruct citizenship technologies and, in that process, resist the dominant discourses that have dispossessed them.

The article focuses on narrative in order to research these Covid-era citizenship losses and resistances for several reasons. First, subjects may be said to have a necessary, though not sufficient, ‘right to narrate’ (Bhabha 2000). Asserting such a right is itself a resistant move; it stakes citizenship claims within representational and broader politics (Bhabha 2000). The assertion of this right has a long history in the HIV pandemic and—especially in the case of long Covid and people who are immunosuppressed—a growing place in the new pandemic too. Second, narratives are not simply telling but also ways of expressing and making knowledge and effects (Plummer 2019). In the HIV pandemic, narratives have gathered people together, literally and representationally, to initiate, potentiate, amplify and constitute resistance. Third, narratives’ occurrence at different scales and across varying modalities (Squire et al. 2014) allows for the reading of multiple registers of resistance, including often-ignored alter-resistances. Lastly, a focus on narratives allows this study to approach more closely the relationships between discourses and their citizenly effects. Narratives, as forms of discourse that build meaning sequentially, and that link subjective to social and historical formations (Carolissen and Kiguwa 2018), can elucidate both how dominant UK Covid discourses erode people with HIV’s lived citizenships, and how people speak and act to resist, recover and reconstitute those losses. Indeed, narratives’ descriptive and generative role has already been explored in relation to pandemic, and specifically HIV, discourse (M. Davis 2021; Squire 2013b).

2. Research Process

This study, a sister project with initiatives in Zambia, Brazil, and South Africa (Mulubale et al., forthcoming) began with extensive consultation with community-based HIV NGOs and potential participants. Ethical approval was granted by the University of East London. The research was developed with two longstanding London NGOs with diverse memberships and the ability to support participants through a portfolio of services, should the research reveal a need.

During the UK’s first spring 2020 Covid lockdown, when only essential work travel and shopping and brief daily exercise outside the home were permitted, we conducted semi-structured audio-recorded phone interviews, modally hour-long, with 16 participants. All had participated in a 27-participant 2019 interview and visual workshop study of living with HIV in constrained resource contexts. This follow-up study explored how COVID-19 was affecting participants’ resource contexts, and what Covid meant for them in relation to HIV. Non-Covid-related physical and mental health issues, and loss of follow-up through lack or failure of prior phone contacts, meant that those not re-interviewed were mostly not available.

Interviews covered physical and mental health services, and psychosocial support—family and friendship networks, social services and NGOs, faith, media, income, education, food, housing, transport, sanitation, and personal living strategies. Researchers did not press participants to discuss all potential topics, but rather followed the participants’ lead in exploring areas that they selected as important. Researchers were mindful of time, energy, and other constraints affecting participants during extended calls. Interviews were transcribed and transcripts checked and returned to participants for comment.

Participants received expenses calculated at two hours university research assistant rate (#45). This amount covered phone and data costs, and travel and subsistence for in-person post-research visual methods and feedback meetings, which are ongoing. The amount was decided by discussion with NGOs and potential participants as properly valuing participants’ incurred costs, time, and research contribution, something often said not to be achieved economically or in other ways by research compensation. The research’s financial and other recognition of people with HIV’s participation and expertise was also in line with the Greater/Meaningful Involvement of People with HIV/AIDS (GIPA/MIPA) and the Denver Principles laid out by people with HIV in the US in 1983. Participants continue to be involved with the analysis and are developing their work for this project in other directions—for instance, through blogs.

Half of the participants identified as bisexual or gay men; seven described themselves as heterosexual or bisexual women; and one as a heterosexual man. Participants came from a wide range of national backgrounds; half were majority world participants.

Participants lived in the London context of relatively high HIV prevalence, testing, and treatment access: London met UNAIDS’s 2025 95-95-95 targets—for 95% of people with HIV to be diagnosed, 95% of those diagnosed to be accessing treatment, and 95% of those on treatment to be virally suppressed—during 2021. London’s Covid prevalence was high and despite relatively good NHS capacity, Covid and other medical demands put the NHS under severe pressure at the time of the research.

Participants were almost all over 40. Most had been diagnosed for more than five years and had co-morbidities. This profile may have resulted from research processes centering on service-providing NGOs. However, people with HIV cannot easily be divided into NGO service ‘users’ and ‘non-users’. Some participants were minor, occasional, or short-term service users. Moreover, people with long and complex histories of living with HIV also took part because they described themselves as having significant pandemic knowledge to contribute.

Participant involvement included research process and question framing, checking and commenting on transcripts, and for 11, responding to analyses—which included de-identified interview materials—sometimes in writing to be included in publications. The prior research process meant participants already had good relations with the research team. Collaboration was partial; it did not constitute co-production or critical participatory action research. However, it is continuing.

Narrative thematic analysis was performed (Riessman 2008; Squire 2013a) using an inclusive definition of narrative as symbol sequences that build meaning across time, space, and/or causality (Squire et al. 2014). Analysis paid attention to narrative structure, content, and contexts. It attended to how and where narrators positioned themselves in relation to dominant and resistant narratives about HIV and Covid. It also considered actual and potential story audiences, endeavoring to understand whether the narratives’ performances pushed back against the force of hegemonic narratives. (Boonzaier 2019; Phoenix 2013). For stories told within research are almost always told in other contexts too. Research participants living with HIV may be telling stories similar to those they tell in the research to themselves, for instance, as well as to friends, family, HIV support networks—and sometimes more broadly.

3. Findings

In what follows, I describe four thematic categories of narratives, how those narratives explain participants’ relations to dominant Covid discourses and their citizenship effects, and how the narratives may operate as forms of citizenly resistance.

3.1. Reduced, Precaritised, and Reconstructed Health and HIV Citizenships

All participants told stories of reduced HIV medical services—for instance, telephone or video appointments, posted medications, longer-term prescriptions, non-HIV treatment delays, and extended appointment intervals. These stories were congruent with the government’s occasional early-epidemic public health, all-in-it-together discourse, and participants evaluated them positively, as protective. The potentially health-precaritising effects of these allegedly temporary Covid-era health citizenship losses were marked, however, by participants foreshadowing the dangers of ongoing delays and a lack of face-to-face appointments. Such foreshadowing constituted direct anti-resistance to the marginalising of groups needing ongoing care within the larger, hegemonic ‘perform “care”, minimise Covid, profit’ state Covid discourse.

Eleven participants told stories of expanded support from HIV medical professionals, who provided Covid information and personally checked in with patients via email, social media, and/or phone. This was a new, reconstructed or ‘alter’ HIV health citizenship, a tangential rather than direct force of resistance that created a new space of medical practice.

All participants also narrated obtaining good medical Covid knowledge through processes often learned from prior pursuit of HIV knowledge. This new Covid expertise, despite its limits as anti-critical resistance to the government’s minimising discourse, enabled participants’ own, ‘alter’-resistant everyday lives.

For instance, Anabella (respondents chose all project names), a Black African woman in her 60s, narrated in several places her awareness of Covid mortality and ambiguities, and how she used her knowledge to keep herself safe:

Anabella:

Yeah, actually, um, it’s been very very tough/mhm/um, during this time, you know of COVID-19/mhm/it’s very scary/yeah/and uh, it’s like um, it’s uncertain, you never know how the day is gonna end up. If you have to go out, like let’s say I need to go out and get some milk/mhm/you don’t know whether you gonna come back, or if you gonna come back with the virus/right/mhm…

Interviewer:

Yeah, sure. Are you uh, are you taking you know, precautions hygiene-wise, is that for you, er.

Anabella:

Yes, actually, I’m actually very good at that/mhm/I don’t hold the door handles with my hands. Um, when I get time I sanitise the, you know, I use the wipes/yeah/to wipe them and every time I go out, I get a tissue and then you know, put the tissue on my face and then open the door, you know/of course/yeah, that’s what I try, by all means…I know a lot of people (who) have actually died and um, yeah it’s like I’m trying to be extra careful not to be the next one, you know/of course/. Even not to try and be get the virus and take it to the next (HIV support group) session you know…

Anabella’s narrative first anti-resistantly marks the restrictions that characterise the difficult, ‘scary’ Covid every day of someone who has to protect her health in a high-prevalence environment. This daily life differed markedly from the wide-ranging daily activities she described the previous year. Second, Anabella narrates the accreting illness and death around her—particularly among the majority-world people, highly exposed through racialised patterns of high Covid-risk housing and low-waged employment, who constitute much of her network. Her narrative thus instantiates a newly precaritised health citizenship, anti-politically resisting contemporary government discourses of unproblematic population-wide health agency. At the same time, the narrative articulates, from Anabella’s position as a Black African woman with HIV, an ‘alter’ resistance that reconstructs health citizenship through forms of care and carefulness she and her friends define and live for themselves.

3.2. From Reduced and Removed Economic Citizenships to Limited Restoration

Nine participants who had in prior interviews narrated their economic precarity, told detailed anti-critically resistant stories enumerating economic and other material losses. Mr. Oscar Milk, for example, a white British man in his 50s living with HIV and co-morbidities, told a long story, partly shown here, about his inability to access food during the first lockdown. The government classified Mr. Oscar Milk as ‘vulnerable’, directed him to ‘shield’ at home, but failed to deliver pledged food support, while supermarket delivery websites crashed or closed:

Mr. Oscar Milk:

Well, I mean, the worst thing about it is that, that feeling of going cap in hand. I, I constantly feel that, like I’m begging. Particularly when I didn’t have any food in the house/Yeah/I couldn’t get anybody to take me seriously at first {sighs}… I could, I could, um, I can’t get to the post office to collect my money/Mhm/and luckily I have some money for a rainy day/Mhm/. But the money was no good to me, it was almost like a Hollywood movie plot/Yeah/. I had the money but the money was no good to me/Mhm/. What I needed was I needed some emergency provisions to keep me going until things went a little bit back to normal…It was only when I got the referral through to the food bank in (London church)… they actually did come through with a food parcel and I’m really grateful to them because I was getting to, into a really dodgy situation, you know.

Milk tells a vivid anti-political story of his resistance to his food rights’ removal—a dispossession that left him ‘begging’. HIV organisations are not here the basis of his minimally restorative narrative of how, in the end, he got basic provisions. However, his ability to search persistently for help relates to his prior experiences of pursuing entitlements as a person living with HIV and other illnesses, as someone concerned about social justice, and as a gay man—an association with dissent emblematised in his chosen project name. He thus also articulates a resistant ‘alter’ socio-economic citizenship drawn from HIV and other histories. Mr. Oscar Milk told such stories of successful struggle more widely, too, especially in online HIV fora, aiming to encourage those with less experience to resist as he does.

3.3. Psychosocial Citizenships: Reduced, Removed, and Reconstructed

Ten participants told stories registering reduced, sometimes removed social and emotional citizenship. Such losses led to more isolation, anxiety, and depression. Eight participants narrated family and friendship networks and seven, the HIV sector, as restoring psychosocial citizenship to some extent but also reconstructing it, for instance with health citizenship, through new online support.

Participants also told stories about a range of other personal and social resources, they used to reconstruct Covid-era psychosocial citizenships in alter-resistant ways. For instance, Mr. Oscar Milk’s story of a freshly realised sociality demonstrates a brief reconstruction of general psychosocial citizenship:

Mr. Oscar Milk:

I was so surprised. I thought everybody in (central London) is so jaded, I didn’t expect it (‘clap for carers’) to happen. But/{laughs}/they all did it and I was absolutely amazed. It’s so noisy. And/Really?/yeah, the only people that funnily enough don’t do it is there’s a very posh block that or, originally was like offices/Right/and they’re all like diplomats in there/Mhm/and they just closed the, shut, closed the curtains and hide all that {laughs}.Really? Really? Oh, okay/{laughs}. All of the different people, you know, I mean, all of the different colours and nationalities, you know, they were all hanging out the window banging and I was really pleased, because I was absolutely convinced that being (central London), that whole sense of community is gone, but they all do it, and it, it is quite impressive. I do get quite a tingle when it happens.

Milk’s narrative here is of alter-resistance via a kind of epiphany. The Thursday evening ‘clap for carers’ moments of social solidarity—albeit excluding elites—overturn his previous cynical understanding of urban life. Another world, it seems for a moment, really is possible. Appropriately, Milk told this story to his own carers. The reconstructive possibility passed quickly, however, for Milk, his carers, and others, flooded out by the government’s performative discourse of care for carers which continued to under provide PPE and pay them minimum wage.

3.4. The Reconstructed HIV Citizen; the Revulnerablised HIV Citizen

HIV histories and presents were often the basis for participants’ resistance. Six participants narrated HIV as a general resource for their reconstructive, ‘alter’ resistance to Covid-era reductions and removals of citizenships. For example, Maria, a white European woman who lived with HIV and co-morbidities, described HIV NGOs providing food, counseling, and medical checks during lockdown as all in different ways keeping her ‘afloat’:

Maria:

if I hadn’t had that [HIV NGO] support I wouldn’t have the motivation at all/yeah/not even from the beginning of that [lockdown]. Um, so it’s, the support is what kept me afloat/mhm/… In practical terms, in the sense for example (HIV NGO 1)/yeah/it’s a delivery with food, also,/mhm/which is quite good and um, for example (HIV NGO 2) have done the coaching/mhm/so yes, so they are the ones that are keeping me afloat/yeah yeah/there is one that is calling and connecting (us) as well, that one that is (HIV NGO 3),/mhm/that is (HIV NGO 3) and now they are called (HIV NGO 4) and they are doing my (weight)/ah okay/that is quite good because we are not working and we are stuck at home and yes, we are then more afraid of the locked in, I am more afraid of no,/yeah/putting on more weight and then developing and having higher cholesterol and so the nurse with the council explained to me the um () I have to disclose a lot of things/right/and so,/yeah yeah/at that point, I don’t want to disclose all my data, so yeah that is the thing that um…

This alternative realm of HIV citizenship does not try to reclaim rights within existing health, social and voluntary services, now increasingly run as marketised siloes. The HIV NGOs Maria mentions work holistically, collaborating to meet her material, psychological and health requirements. Instead of resisting other organisations’ disclosure strictures, Maria’s HIV citizenship, supported by HIV NGOs, simply puts her rights to confidentiality first.

Yet, this HIV citizenship comes with a difficult history. Participants also narrated Covid as revisiting HIV trauma. This re-traumatising generated fear, made Covid more difficult, and positioned them as re-vulnerabilised, re-ignored citizens. As Maria, again, put it:

Maria:

but um yes it all depends in which circumstances you are/yeah yeah/and also the baggage, the baggage that you carry./yes yes/I think that people, I mean that people living with HIV or people who have uh, I mean I’m talking about my case but who have, who are living with HIV and in my case for example that have to live with it more than 30 years, I think that psychologically, we are way more scared/mhm/because we had to go that initial phase of facing death, you know, we were told we were going to die, then we lost many friends, um, so yes it has been a bumpy ride I would say/yeah/all those 30 years, so you know, then I was diagnosed with the cancer. So psychologically, you are more scared, you know I am more scared/yeah yeah/and in some cases that would make it perhaps a bit more difficult to cope?/yes/I mean ( ) more resilient, sometimes we can be more resilient but still, uh…

Maria’s narrative moves here from the sociality and support of HIV citizenship in Covid times, to the limits of such alter-resistance. Medical and social protection against Covid is falling short, as such protection did with HIV. Again, they ‘leave behind’ those who fall outside dominant narratives that naturalise healthy, productive citizens. In such circumstances, the fragility and fear that end Maria’s story are a powerful anti-resistance to Covid’s discursive minimizing. Furthermore, this is a narrative that is appearing elsewhere in the HIV sector, articulated both by those with HIV and those working in HIV services.

3.5. The Citizenship of Pandemic Complaint

Within study participants’ anti- and alter-narratives, and outside of them, it was also possible to hear parallel narratives of what sounded like a third kind of resistance: resistance as complaint. These narratives were testimonies against injustice, like those Sara Ahmed (2021) describes within feminist resistance. Such witness-bearing narratives carry criticality, but they do not generate anti- or alter-political resolution. They simply mark and re-mark what has been lost or broken by Covid and needs to be reclaimed or mended. They may often be dismissed, viewed as annoying distractions—as happens with feminist complaints about, for instance, sexual harassment and domestic violence—but they continue, insistently, to be made. Arabella’s noting of all the things she had to do to protect herself in a governmentally-sanctioned high-prevalence environment, Mr. Oscar Milk’s detailed description of the many refusals of his food rights, and Maria’s lament for the renewed damage of the past, instantiated such quiet but consistent, resistant complaint. Complaint might not operate as directly or obviously effective resistance; but it builds up a layered history of objection that does not go away, that waits for the future.

4. Discussion

As implied by many earlier studies on Covid’s intensification of inequalities (UN 2021; World Economic Forum 2021) and by other research on how that intensification is playing out for people with HIV (Ambrosioni et al. 2021; Bhaskaran et al. 2020; Brown et al. 2022; Dhairyawan and Chetty 2020), this study found that the pandemic had extended the entitlement losses with which people with HIV live. While participants’ health citizenship was previously relatively well supported, Covid had generated ongoing health resource precarity and reduction. It had also lessened and at times removed economic and psychosocial citizenships. Few participants thought these citizenly losses were restorable. Rather, they told stories of what we can call de-citizening technologies, delivering irreversible entitlement losses in the service of dominant state Covid discourses. Such narratives of de-citizening differed from the stories of qualified erosions and gradualised reshapings of citizenships that HIV activists and researchers have previously told: they marked breaks, rather than shifts.

Participants’ narratives also documented and performed re-citizening technologies that contested these newly sharpened effects of dominant Covid discourses. Re-citizening operated through anti-political criticisms of resource loss, the pursuit of resource restoration, and reconstructive alter-resistances. In the re-citizening narratives, restoration failed or was contingent; reconstruction was limited, often unsustainable. Re-citizening’s resistance did not have comparable power to de-citizening, as Maria’s narrative of the impossibilities of psychosocial protection from pandemic re-traumatising showed. However, re-citizening narratives demonstrated how anti- and alter-political resistances can occupy the same spaces, operating either sequentially or alongside each other, supporting Hage’s (2015) explication of the necessity of these different critical politics working together. In this special issue, Davis’s broader survey of the possibilities of an affirmative bio-political Covid commons resonates with these re-citizenings. While ‘hope’ is too bald, simplistic and comforting a term to apply to these participants’ difficult narrative endeavours, in research and in other areas of their everyday lives, the Freirian embedding of hope within struggle, on which Ann Phoenix draws in this volume, perhaps provides a workable frame for their re-citizening.

Participants’ resistance narratives indicated a notable resurgence of HIV-specific support in Covid times. This move toward HIV-specific citizenship drew on people with HIV’s resources as pandemic experts. It also reinforced the importance of addressing alter-political processes. However, it is important not to romanticise such a move. Participants noted at the same time the other resources on which they drew—for instance, for Mr. Oscar Milk, a broader history of pursuing social justice. They also repeatedly noted the limits of HIV-specific citizenships as resistances to dominant Covid discourses.

In an economic situation where all participants previously managing precariously were now not managing, participants did not narrate extensive economic re-citizening. Such moves must be pursued in other sectors. International NGOs and policymakers emphasise the need for governments’ enhanced investment in and commitment to social protection to maintain the citizenships of those who are Covid-disenfranchised, particularly those already living with multi-dimensional inequalities (UN 2021; UNAIDS 2021; World Economic Forum 2021). Highly HIV- and Covid-affected countries like South Africa are considering radical economic shifts in tax or social grants like Basic Income Grant to meet such requirements (Pienaar et al. 2021). High-income countries now facing cost-of-living pressures they have not experienced for 50 years, alongside the legacy disenfranchisements of 20 years of austerity, and ongoing Covid waves, may need to look at similar measures (Patel and Kariel 2021).

Participants’ narratives of de-citizening and re-citizening raise the possibility that similar Covid-era de-citizening and re-citizening technologies may be in play for people living with other health conditions, disabled people, and those disenfranchised by economic, food, energy and transport poverty, and racialised injustice. These groups’ Covid-era low- or no-wage and low-consumption status, and their Covid vulnerabilisation, mean that current naturalising state discourses of Covid ignore them, positioning them as non-viable. Such citizenly exclusion is signalled by, for instance, the withdrawal of rights to free Covid testing, PPE at work, supported isolation, masking, and indoor distancing. In Covid’s contemporary discursive economy, the waste-matter status of people with HIV and similar others—not even recognised as useful material, let alone as citizens—also points up the increasingly machinic, non-human discursive status of everyone else. Those who still claim full health, economic and psychosocial citizenships are now, as Mbembe (2020a, 2020b) points out, always precariously positioned: at risk of falling out of citizenship, even humanness, into discursive abjectification; and as Davis points out, citing Mbembe, outside the conditions of life itself.

A future of resistance is perhaps being mobilised against these intensified exclusions through the narratives of complaint that appeared across participants’ interviews. These insistent complaining re-markings work in and of themselves; they are not routes to or from other forms of resistance. However, even if they are ignored, neglected or repressed, by claiming the right to narrate precisely the removal of rights, they staked an ongoing claim for that removal to be recognised and responded to.

Politically resistant discourses are, like dominant discourses, not only about what is happening now. As Angela Davis (2021) and Cornell West, writing about Black Lives Matter in the aftermath of George Floyd’s death and within the ongoing Covid pandemic emphasised, resistance is a historical process of many ‘moments of interruption’ accompanied by efforts to sustain them (West 2021; see also Phoenix, this volume). These confluences of resistance also take place across many different domains, some of them not immediately obvious (M. Davis 2021). In this study, participants’ resistant stories were fed by people with HIV’s past struggles to be heard and effect change—struggles which were often ignored, neglected and repressed before they succeeded—as well as by the pursuit of social equity in other fields, particularly that of racialised injustice. The way in which such resistance mobilises HIV and other histories and presents to accrete a progressive future, even in regressive times, itself tells an important story about how resistances to dominant discourses across time, and from different contexts, can become amplifying resources for present crisis.

Attention to narratives allows for the exploration of such processes, particularly at the level of their everyday enactment. Each story told in the research, because it is just one story among a crowd of related narrative performances, indicates how such narratives can exert and intensify resistant force by generating new citizenly possibilities. For people do not just tell such stories in research—very often, they tell them elsewhere. As exemplified by re-citizening narratives in this article, participants were telling their HIV and Covid stories to families, friends, professionals, and HIV networks, setting up expanding ripples of re-citizening that, despite their limits, showed how lived resistance may spread and grow.