Disability,chronic illness and COVID-19: Creating criptopias in the wake of a global pandemic

Abstract

This article aims to consider the COVID-19 pandemic as a unique case study for analysing the relationship between utopia and failure in the context of disabled people's efforts to create COVID-safe communities and spaces. As such it contributes both to literature on disabled people's utopianism and analyses the relationship between utopia and failure from two different angles. Firstly, utopia and its relationship to failure is explored in the sense in which some disabled people have characterised the initial phase of the pandemic as a fundamental utopian shift in how accessibility and inclusion can be understood. Of course, in the UK since then the government's failure to implement effective prevention measures at an early stage of the pandemic has led to COVID-19 becoming fully endemic. Hence, the second sense in which the tension between utopias and failure seems of relevance here is in the context of disabled and clinically vulnerable people establishing their own COVID-safe communities in the absence of effective containment measures during the ongoing endemic phase of COVID-19.

The impact of the global COVID-19 pandemic in many ways could not have come at a worse time for disability communities in the UK. In the UK, a decade of austerity politics imposed by successive governments meant that both the healthcare and the welfare system were in especially precarious positions (Ryan, 2020). This was compounded by the introduction of de facto rationing policies in the National Health Service (NHS) that disproportionately negatively impacted disabled people (Abrams & Abbott, 2020), for instance through the imposition of Do-Not-Resuscitate orders on people with learning disabilities, without any attempts to ensure consent from patients or carers (Mencap, 2024). People with many disabilities and chronic illness were also at disproportionately higher risk of serious illness and death due to COVID-19, including but not limited to those with immune deficiencies, respiratory disorders, and diabetes. In official discourse such lives were implicitly treated as more ‘expendable’ than those of healthy, working-age adults (Ktenidis, 2020; Liddiard, 2020). This extended to a direct governmental acknowledgement that many would die ‘before their time’ (Millar et al., 2025). Such sentiments directly ‘constructed the deaths of vulnerable people as less preventable and therefore more acceptable than those of younger, healthy people’ (Millar et al., 2025). It is therefore unsurprising that many disabled and chronically ill people experienced the pandemic as a time of particular danger and uncertainty.

Nevertheless, one unexpected benefit of the pandemic was the sudden acceleration of existing shifts in working and socialisation practices from primarily in-person to increasingly taking place online. For those with certain physical impairments or long-term conditions who were accustomed to patterns of exclusion from physical spaces, the ‘disabling’ of society overnight through lockdown and social distancing measures in many ways levelled the playing field (Renz & Williams, 2022). It allowed some disabled people who had been excluded from economic and social life to participate in society in the same way as everyone else during that time period. However, with the availability of effective vaccines many of these shifts in behaviour have been abandoned as swiftly as they were introduced, leaving disabled people once again at risk of systemic exclusion.

Historically disability communities have often responded to failures of inclusion by states and wider societies by creating separate/separatist spaces that present an alternative vision of what society could look like (Valentine & Skelton, 2008). These spaces, whose development is triggered by different forms of failure, present the possibility of re-imagining, and in some ways acting as if, society already values the lives of disabled and chronically ill people differently. As such the impetus to manage the risk of COVID for disabled people can be read as an extension of such long-standing dynamics. Here, by treating health and ability as inherently relational issues that can often be highly variable, the demand for COVID safety measures imagines a utopian society that moves beyond the marginalisation of those whose lives are deemed as irrelevant to a neoliberal capitalist society (Young, 1990). Using the lens of Donna Haraway's Cyborg allows for the reading of such COVID-safety measures as ‘oppositional, utopian’ approaches (Haraway, 1991, p. 151) in which technologies supplement our body's ability to fight off infections, these moves are not only measures to protect specific vulnerable individuals. Rather, they also model a desire to use the failings of society, including of other utopian inclusion efforts, to envision different ways for people to relate to each other and to prioritise the needs of vulnerable groups over the convenience of the majority.

The COVID-19 pandemic incisively highlighted the dangers posed by respiratory infections not just for disabled and chronically ill people, but for societies in their entirety. As a consequence, spaces of work, political participation, and socialisation suddenly became viewed as vectors for transmission of a potentially fatal illness. This in many instances led to a shutting down of such spaces and, where possible, a shift to virtual or online activities. Given the high death toll attributed to COVID infections in the UK and across the globe, this may seem a strange setting in which to explore the role of utopias. However, in this article I would like to consider the ways in which utopias for disabled people are imagined in the context of the COVID pandemic from two different angles. Firstly, in the sense in which some disabled people have characterised the active phase of the pandemic from 2020 to 2022 as a fundamental and even utopian shift in how accessibility and inclusion can, and should be, understood by society at large. Of course, in the UK since then the government's failure to implement effective tracing, testing and prevention measures at an early stage of the pandemic has led to COVID-19 becoming a fully endemic illness with frequent new and evolving variants. Hence, the second sense in which the tension between utopias and failure seems of relevance here is in the context of disabled and clinically vulnerable people establishing their own COVID-safe communities and spaces in the absence of effective containment measures during the ongoing endemic phase of COVID-19.

The first part of this article will consider the at times challenging relationship between utopian political thought and disability theory, before turning to the ways in which disability scholars have embraced some aspects of utopian political thought to consider ways in which disabled people's ‘acting as if’ helps to model a more inclusive vision of the future. The second part of this article engages with the role of technology in making inclusion possible drawing on transhumanist approaches and particularly Haraway's figure of the Cyborg as an exploration of an example of how utopia and disability might be understood together, but also as a lens through which to then show how the case studies that follow complicate a transhumanist-aligned approach to utopia and disability. The third and final part will consider different facets of two case studies in which disabled people tried to create different models of community and inclusion during both the pandemic and endemic phase of the pandemic and how this intersects with the necessary failure of many minor utopias. Given that retrospectively the COVID pandemic seems to be primarily considered in regard to its negative effects on non-disabled people, of which there are undoubtedly many, and the ways in which governmental failures led to excess deaths of disabled and chronically ill people, this article seeks to explore an entirely different facet of the pandemic. Specifically, what is foregrounded here is the generative impact of the pandemic for disabled people in creating more utopian visions of society that nevertheless stem from, and are intimately connected to, different states of failure. As such this article will contribute to existing literature on disabled people's utopianism, while also offering a reading of the COVID pandemic as a case study that is in many ways unique in the sudden and forceful societal reordering it generated over just a couple of years.

Disability and utopia

Utopian thought and disability theory have a long-standing, if at times fraught, relationship. Some of the challenges of bringing these two fields together derives from the fact that disability as a state of being is still frequently read as a negative or disadvantage. It is therefore not uncommon for utopian visions of the future to, either explicitly or implicitly, imagine a future without disability and in which a better world can be more readily achieved ‘if disability could be eliminated’ (Garland-Thomson, 2012, p. 340). ¹ In doing so, it elides both the line of thought underpinning this – the existence of disability is seen as so negative to be counter to future-facing and utopian projects – and the means that would be necessary to achieve such a vision of society, which in all likelihood would be a series of enforced eugenic practices (Curtis, 2015). In this approach to imagining the future, disability becomes coded as something with no viable future at all, which arguably does not just limit visions of disability-futures, but also negatively impacts the lives of disabled people in the present (Kafer, 2013). Instead in traditional utopian literature disability is either a characteristic that must be overcome, or disposed of, to achieve a utopian society, or is actively associated with dystopias (Garland-Thomson, 2012). As such disabled bodies sit directly counter to a vision of ideal societies populated by individuals with ‘normal’ or even ‘perfect’ bodies free from illness or disability (Goodley, 2018). It is therefore unsurprising that critical disability scholarship has at times rejected utopianism as diametrically opposed to disability justice as a political project, because in the context of disability, the idea that utopian political theory envisages the future as open and something that can be shaped in various different directions (see e.g., Thaler, 2022) has already been foreclosed by presupposing an absence or eradication of disabled people.

This vision of the future contrasts with social model based approaches to disability scholarship, in which disability is seen as primarily being caused by society's failure to make accommodations for different impairments (Oliver, 1996; Shakespeare & Watson, 1997). Therefore, a society that fails to make adjustments in favour of simply presupposing that impairments will cease to exist, could hardly be characterised as a utopian one from a disability perspective. It is therefore unsurprising that some writing in Disability Studies, including in the work of Garland-Thomson (1996) and Shakespeare (2006), actively turns to anti-utopian analyses to map and challenge the effects of Utopian approaches on disabled people. Garland-Thomson for instance explicitly describes eugenics as ‘a utopian effort to improve the social order’ (1996, p. 340). She argues that it is therefore unsurprising that utopias in a literary context are generally built around an absence of disability, while dystopias are in part characterised by the proliferation of disability and disabled people. Shakespeare in turn specifically criticises both what he sees as the utopianism of the social model of disability, which in his reading, presumes that all barriers to inclusion can be eradicated and the disability utopia described in Finkelstein's (1980) village built solely around the needs of wheelchair users. Shakespeare (2006) argues that the latter, despite supposedly being a utopia, is nevertheless characterised by an emphasis on being able to work as an inherent good and something disability inclusion should always prioritise, which he argues is far from a desirable outcome (see also Mackey, 2009). Nevertheless, both could be read as illustrating Jameson's (2001) argument that anti-utopianism serves a dialectical function towards utopianism, in that the criticisms posed by it can also provide the basis for new utopian imaginings in an iterative process.

This is not to say that the disability rights, or disability justice, movement never involves utopianism. In fact, Vogler (2024) convincingly argues that the US disability rights movement from the 1970s onwards has been underpinned by a strong ‘utopian impulse’ that fits with a wider turn towards a ‘dissenting utopianism’, in the sense that such utopias seek to maintain a critical distance from dominant culture, and the utopian impulses of marginalised communities rather than approaches to utopias that treat them as an abstract blue print for an imagined ideal society (see also Cooper, 2014; Levitas, 2010). Others have pointed out that if Utopian studies were to take disability seriously, it would become evident that Utopian Studies and Disability Studies are built around obvious parallels. As Mackey (2009, p. 2) argues disability scholarship is ‘founded on identifying and dispelling social exclusion and social oppression through ideals of harmony, unity, and interdependency among disabled people as a group; these same ideals permeate much of modern socialist Utopian thought’. It is perhaps easier for social justice movements, including disability focused movements to be seen as engaging in ‘minor’ utopianism where difference, divergence, and contradiction are more easily accommodated and which is underpinned by an awareness of ‘necessary failure’ and the ‘provisionality’ of any utopian project (Levitas, 2007, p. 290). As Winter (2006) argues, minor utopias are not proposing there is a perfect solution or ‘holy grail’ to be found once they are fully realised, hence they do not presuppose a society in which all oppression or conflict has been eliminated. For Winter (2006) the core distinction between major and minor utopias seems to be primarily that the former are predominantly large scale political projects championed by those in government, while the latter can contain a much wider range of projects. For the purpose of this article the distinction between these two types of utopian approaches seems most relevant in differentiating in terms of scope between projects that have a wide ranging political or social uptake and those that are predominantly minority practices. As such the utopian projects discussed here also resonate with the idea of ‘everyday utopias’ (Cooper, 2014) or the idea of utopias ‘as architecture’ (Levitas, 2013). This is in the sense that they offer a critique to contemporary social practices, by trying to offer up ‘alternative ways of life’ (Salmenniemi & Ylöstalo, 2024) that seek to challenge the boundaries of what is deemed possible or doable within wider society. These projects here in many ways also parallel anarchists approaches that link prefigurative practices, that is acting as if the world was already different than it is, with more utopian perspectives (see e.g., Gordon, 2009, 2017). While prefiguration and utopianism emerge from different political traditions, here it seems most relevant to acknowledge the extent they overlap in their emphasis on alternative social and political practices that try to unsettle the extent to which certain ways of organising society are only taken for granted due to the lack of alternatives being offered up by mainstream social and political discourse.

Marginalised communities face a particular challenge in imagining a more utopian society given that they are doing so from a position of oppression, in which their views or even presence are rarely seen as vital to shaping the future. This seems particularly acute for disability focused utopian projects, given the ongoing dominance of views of disability as something to be either eradicated (Nielsen, 2012), thinking for example of genetic testing for Down's syndrome, or as something to be ‘fixed’ in order for the disabled person to align more closely with society's view of normality (Nielsen, 2012; Shakespeare & Watson, 1997). As Vogler (2024, pp. 594–595) sets out, a utopian process centring the marginalised then requires a ‘reversal of the devaluing process’ in order to treat excluded communities as ‘a natural part of utopianism’. Drawing on crip theory (Kafer, 2013; McRuer, 2008) and the work of Adolf Ratzka (1998) Vogler uses the term ‘criptopia’ as a descriptor for utopias that focus on different ways of imagining the relationship between society and disability. These criptopias emphasise both the centrality of disabled people in envisioning such a future and the productive force of disability as a concept and social fact in aiding us to imagine what a better society could look like. As such they are implicitly based around the agency of marginalised groups to shape their own futures, rather than being primarily passive actors in grander utopian visions in which they may or may not be included. By their very nature minor utopias based around specific marginalised groups are intimately connected to failure. They are often the direct response to the failings of dominant culture to include communities based around certain characteristics like race (Zamalin, 2019) or disability (Osbourn, 2013; Vogler, 2024). ² Unlike major utopias they are also structured around ‘necessary failure’ as an actualised utopia would require such a radical reconstitution of our society and our every selves that it is effectively unimaginable (Levitas, 2007, p. 303).

While the relationship between utopian thought and disability studies is clearly not an uncomplicated one, these two fields of inquiry nevertheless benefit from being in conversation with each other, by articulating a vision of the future, or future facing practices that truly intend to include everyone without treating disability as something that is inherently in contradiction to positive future imaginaries. Using the framing of criptopias, then, offers a method for considering practices during the pandemic not primarily as a reactive strategy to mitigate governmental and societal failing, but rather as a radical reclaiming of visions for the future that are explicitly built around the needs of disabled and chronically ill people rather than excluding them or only including those who can meet certain non-disabled standards in order to participate in society.

Can cyborgs have a chronic illness?

One particularly striking aspect of both the utopian case studies/projects discussed in the sub-sequent section of this article, is the intimate, if not foundational relationship to technology. The shift to remote working heavily relied on video technology, which for some disabled people had the additional effect of making existing physical adjustments unnecessary, while also easing the personal energy burden inherent to navigating the material environment, regardless of how accessible it is. Similarly, COVID mitigation measures, from high-tech masks to air filters, rely on technology to mitigate the risk of harm to everyone in a given space. Such moves sit in an interesting tension with some contemporary tendencies to primarily discuss the human/bodies/technology intersection in the context of the potential technology has to advance human physical capacity and ‘enhance human condition’ as seen in the transhumanism movement (see e.g., Pilsch, 2017). ³ In its theoretical iteration this movement often draws on Donna Haraway's figure of the Cyborg (1991) as a ‘utopian figure’ promising radical evolutionary transformation by showing how humans can improve upon their bodies through technology (Pilsch, 2017, p. 186). While to some extent the criptopian projects discussed here do utilise technology for radical transformation and do resonate with the figure of the Cyborg, they do not rely on technology to somehow improve upon human bodies. In fact, such a move would sit directly counter to criptopian themes of centering and normalising disabled bodies rather than seeking to change or normalise them through medical technologies. Arguably the criptopias here use technology as an asset that principally benefits everyone, but that is particularly beneficial to disabled people, without turning to the technological impulse to ‘improve’ disabled bodies by somehow rendering them not-disabled as can be found in some of the utopian projects Garland-Thomson and others specifically highlight as being underpinned by eugenic practices.

Mackey (2009) argues that while there is a utopian impulse in measures to maximise our own physical capacity and health, it is nevertheless a ‘fantasy that we are supposed to have the physical wherewithal to maintain our bodies, stay free from impairment, and embody youth and beauty. The burden of choice creates the further burden of responsibility […]’. Mainstream narratives around COVID precautions arguably mirrored this approach. While initially the emphasis was on everyone to make the ‘right’ choices to protect those most vulnerable to COVID, this quickly disintegrated into solely making disabled and chronically ill people responsible for protecting themselves, an endeavour that was always going to be extremely challenging for those most dependent on others for their daily needs. Arguably then efforts to reverse the burden of choice, by making everyone, not just those most vulnerable, responsible again for taking COVID precautions flip the traditional script in which disabled lives are seen as less valuable. Instead, the ‘fault’ in Mackay's terms lies squarely in the failings of society at large, rather than as traditionally understood with disabled and chronically ill people for somehow having failed to optimize their health.

Instead, remote working and socialising, as well as efforts to establish and maintain COVID-safe spaces could be read through the lens of Haraway's Cyborg not as a form of transhumanism, but as ‘oppositional, utopian’ (Haraway, 1991, p. 151) approaches that challenge normative assumptions about what bodies should be able to do or cope with. Following this line of thinking technologies such as Do It Yourself air filters (see, e.g., National Education Union, 2023), protective face coverings and the use of virtual spaces supplement our body's ability to fight of infections, are not premised on a responsiblisation of particularly vulnerable people for their own health, or individualised responses to demands for inclusion, but rather place an obligation on everyone to consistently care for each other by protecting each other from avoidable illnesses. Similarly, remote working when used as the default mode of engagement instead of a special adjustment granted only to people who can evidence a need for it, is based on a presumption that we must all care for each other through ongoing practices in which modern technology can significantly aid. These projects also model an explicit desire to use the failings of society to re-envision different ways for people to relate to each other and to prioritise the needs of vulnerable groups over the convenience of the majority.

However, this transition to a different way of ordering society is impossible without a critique of the past and in many cases the present (see e.g., Levitas, 2013). Hence both criptopian case studies I consider here implicitly feature a critique of the current state of affairs. As discussed below, those who felt newly included through COVID regulation, also had to reckon with the emotional impact of knowing that this inclusion had in theory always been possible but had been denied to them as long as it only benefitted disabled people, rather than society at large. For those who feel the battle against COVID becoming a permanent feature of our lives has now been lost and can only be mitigated through grassroot efforts, this involves an acknowledgement of the profound failure by states and society at large to safeguard disabled and clinically vulnerable people that now needs to be compensated for through human reliance on technological interventions as well as an acknowledgement that both the earlier project has failed and that even spaces and instances that do still utilise COVID-safety measures may eventually abandon them. Nevertheless, both projects demonstrate the value of hoping that practices that may seem utopian compared to mainstream approaches may still succeed, even if only in tentative and contingent ways.

Finding utopia in a global pandemic

The advent of the pandemic in early 2020 was for many disabled people a time of extreme uncertainty and danger. Due to a lack of government support and effective guidance, particularly in the initial pandemic phase but also in the longer run, disabled people in the UK were often left to improvise their own safety measures (see e.g., Abrams & Abbott, 2020; Sisters of Frida, 2020). From working out how to safely buy food, to how to COVID-proof ventilation equipment or procure COVID tests for care staff, it became apparent early on that the government failed decisively in its responsibility to disabled, chronically ill and clinically vulnerable people. In the absence of official guidance and responsibility then, managing life during a dangerous, viral and crucially airborne pandemic quickly became the responsibility of disabled people themselves. These impacts were unevenly distributed throughout British society, with those from ethnic minorities and/or working in public facing, generally blue collar jobs being disproportionately at greater risk of serious illness and even death.

While there were practical ‘real life’ interventions such as mutual aid groups, one predominant solution to the risk of infection and potentially death was the shift of most daily activities online. For many disabled people this meant a sudden and profound improvement in accessibility. For those who had previously been excluded from work, education and social settings due to a lack of accessible infrastructure, the impact of energy limiting conditions, and the pre-existing risk of infection, the shift to virtual interaction suddenly showed that reasonable adjustments that had been deemed simply impossible by mainstream society prior to the pandemic, where in fact possible and benefitted both disabled and some non-disabled people. The idea of posited positive changes being supposedly impossible to implement of course is a charge frequently levelled at Utopian projects generally. However, in this particular case it both reflects a failure of imagination, and, given how quickly adjustments were implemented once it became clear the pandemic would affect everyone, also a failure to want to include or support disabled people at an individual and at a state level.

My own research on working practices during the pandemic (Renz & Williams, 2022) ⁴ and that of others (e.g., Taylor et al., 2022) has shown that the shift to online working in particular has been perceived as an enormous benefit by disabled people with a vast range of impairments, many of whom were not particularly vulnerable to COVID but who had struggled with the effects of living in a continuously inaccessible society as disabled people. ⁵ The primary purpose of the project (Renz & Williams, 2022) was to investigate whether the sudden availability of remote working during the pandemic had changed the experience of remote working for people with physical impairments. One unexpected outcome of a socio-legal project primarily focused on policy issues, was how frequently this near-instantaneous change in working practices also led to disabled people reflecting on both what it means to be disabled in contemporary society and the overall attitude society as a whole seems to hold towards reasonable adjustments and disability inclusion. As one participant described the shift to remote working: ‘When we started working from home it was literally life changing. I was suddenly outperforming my whole team’. While many people experienced the impacts of the pandemic, and particularly the effect of successive lockdowns as ‘life changing’, for most people this referred to a profoundly negative change, but for some disabled people the reverse was true. In a challenge to some proponents of a strong social model of disability (see e.g., Oliver, 1996) even those who had useful reasonable adjustments in place in their daily life, part of the transformative impact of remote working was that it simply required less energy than navigating the outside world, regardless of how accessible this world has been made. In fact, one participant described this living in ‘a parallel energy universe’, which one might argue goes beyond just imagining a different future, but an entirely different world that had suddenly become attainable.

Many research participants felt frustrated that something that had previously been seen as entirely unfeasible by managers had overnight become the new normal. In the words of one participant: ‘All the time they said it wasn’t possible was a lie, because as soon as COVID hit it was possible.’ This for some participants led to somewhat conflicted feelings about the ability to work remotely, with one participant noting that ‘[i]t's almost bittersweet seeing that it [remote working] is possible’. This in some ways highlights the productive tensions that can emerge when what are otherwise minority practices, here remote working for a few disabled people allowed only in rare circumstances, suddenly becomes the default mode of being. The changes enacted by governments during the pandemic brought into sharp relief previous failures to more effectively include disabled and chronically ill people.

This is not intended to suggest that enabling disabled people to work, or to work more ‘effectively’ offsets the impacts of all impairments or suddenly renders people not disabled. As Abberley (2002) notes some impairments, particularly those involving chronic pain or severe fatigue/energy limiting conditions (see also Hale et al., 2020) can never be fully mitigated through adjustments, no matter how utopian their aim. Similarly, ensuring that everyone is able to work is not inherently either a Utopian impulse, nor should it be the default end-goal of disability related social justice projects, given that some disabilities will always have such a significant impact that they render individuals unable to work (Abberley, 2002; see also Shakespeare, 2006 as discussed above). Nevertheless, being enabled to work when one wants to do so, or to work in ways that do not further worsen existing impairments, can of course be a transformative experience for many. It allows for participation in economic life, but also in many ways in social life, which under neoliberal capitalism is often facilitated through employment, either directly through socialisation with people one knows through work, or indirectly because socialisation opportunities that do not require money are increasingly limited. In a strong divergence from non-disabled people's perception of remote working, a significant proportion of participants felt the shift to remote working had increased the amount of social contact they had both in- and outside work. One participant noted that ‘[m]y colleagues became my friends because these sort of barriers we had disappeared’. While others stated that they felt more socially ‘included’ in their workplace because remote working had levelled the playing field in terms of work-based social interactions between co-workers in the sense that now everyone had to make a conscious effort to engage with people while the mode of engagement had been standardised. Ironically, despite official communications often othering disabled people and those with ‘underlying conditions’ as disposable, the shift to remote working and socialisation had a quasi-utopian character for many disabled people as it allowed a shift from focusing solely on material adjustments for ‘disabled bodies, to the collective life in which they dwell’ (Abrams & Abbott, 2020). This shift did not disregard the underlying impairment a person might have, but rather it allowed a focus on the life they want to and can lead with their underlying impairment if inclusion is facilitated through shifts to digital modes of engagement.

This positive impact of the pandemic and the incidental shift towards more inclusive practices was often challenging for participants to talk about, as it happened against the backdrop of a global pandemic that for a majority of people, even if they were not directly affected by COVID themselves, had significant negative impacts. In turn this meant that many participants felt that prior to the research interview they had been unable to discuss the inclusion benefits they had experienced due to COVID as this might have been perceived as insensitive to others, who did suffer during COVID. At the same time a strong theme during this research project was that for some disabled people the pandemic had a utopian effect as it allowed for radically different participation in society that had been denied to most disabled people pre-pandemic.

As such it is unsurprising that once many COVID mitigation measures were abandoned and in-person working and socialising became the norm again, some disabled people experienced this shift as a profound loss. For those with some disabilities, calls for ‘back to normal’ post-pandemic meant little more than ‘back to exclusion’ (Ryan, 2021; see also CIPD, 2020). The abandonment of remote working and socialisation and COVID-mitigation measures was experienced by some disabled people as an explicit failure of a utopian project, not just because it meant COVID-19 became endemic and circulated freely, but because it meant a sudden step backwards in terms of disability inclusion. As such it is unsurprising that a subset of disabled and chronically ill people are still articulating the perceived benefits of the pandemic time with a sense of longing. For instance, ‘The Sick Times’ (2025) is a journalistic project aimed at ‘chronicling the Long COVID crisis’. While it is primarily intended to document research and personal accounts about the issue of those suffering with ongoing health issues after a COVID infection, a recurring theme is people's frustration at the fact that COVID mitigation measures and digital inclusion of disabled people have been abandoned since the acute face of the pandemic. Nadi Zimmerman (2025) for example strongly articulates the felt loss of a community, as well as the negative economic and social impact she experienced as a direct consequence of the ‘return to normal’ that was widely celebrated by parts of society. She argues that what is needed is a more ‘open and honest discussion about the cracks in our systems into which so many disabled and COVID-cautious people are swept’ and that this is vital for ‘creating broader communities of care’ (18 April 2025). This in many ways parallels the demands of earlier parts of the disability rights movement that challenged the erasure of disabled people from daily life, primarily due to institutionalisation, and campaigned for what then seemed to be utopian but basic rights to inclusion (Vogler, 2024).

Endemic utopias

Taking up the call to identify ‘cracks in our systems’ (Zimmerman, 2025) it seems worth considering the utopian potential, and its intimate relationship to failure, of a secondary disability focused movement connected to the COVID-19 pandemic. Obviously, there is an inherent contradiction in perceiving a pandemic in which disabled and chronically ill people were disproportionately at risk as a utopia, particularly when the UK government is perceived to have failed so profoundly in its preparedness and responsibility for the entire population as evidenced in the initial governmental inquiry into the COVID-19 pandemic (Hallett, 2024). As such it is unsurprising that such a positive perception of the active pandemic time does not extend to all disabled people equally. Morris (2024) for instance provides an autoethnographic account of the pandemic as distinctly dystopian for disabled and chronically ill people, both in terms of state administration and surveillance, but also ‘people's struggle to survive in the midst of a catastrophe’ with Morris drawing parallels to the emergence of HIV/AIDS.

In line with this more negative overall view of the pandemic the current endemic time has been characterised even more negatively by many disabled and chronically ill people. This is due to a combination of the failure by the UK government in almost all settings to lastingly implement COVID-safety measures, in particular masking and adequate artificial and natural ventilation measures, and the abandonment of inclusion measures that for many disabled people had significant utopian potential, even if they had not been intended as such. In many instances the withdrawal of both safety and inclusion have been justified by pointing to the efficacy of vaccines and the reduction in severity and mortality of COVID-19 variants (M-Amen et al., 2022). At the same time disability communities in particular have led the push to maintain COVID-safety measures in the so-called ‘post-pandemic’ era despite the failure of governmental leadership in this regard. By organising community events, or lobbying larger organisations to hold separate events, that prioritise COVID mitigation measures such as masking, the use of artificial ventilation/air filters, and regular COVID testing, disability communities have created sites that present a different, and potentially utopian vision of what safety can look like in the face of wider societal failings (see e.g., The Society of Authors’ statement COVID accessibility for events (Reed, 2022)). The Society of Authors notes that one consequence of a return to ‘pre-pandemic setups’ has been the exclusion of disabled authors from planned events. They consequently argue that ‘equality of access’ requires not ignoring the positive lessons that can be learned from the pandemic and recommend a range of inclusion measures that event organisers should ideally follow (Reed, 2022).

Similarly, the Inklusion (2023), which focuses on disability inclusion for literature events, states that ‘While there is no longer a legal requirement for people to wear masks indoors or take LFTs before attending events, event organisers can be good allies to disabled people by having COVID safety measures in place […] some disabled people may not be able to attend events in-person if these safety measures aren’t in place’. They provide a template for organisations seeking to implement such safety measures, which states ‘We provide lateral flow tests and ask everyone to take one daily before entering the venue, registering the result. We ask everyone who is able to wear a mask, and we provide a range of surgical, surgical with transparent panel, and FFP3 masks […]’ (Inklusion, 2023, p. 52). Importantly the guide notes that even with safety measures some disabled people are unable to participate in in-person events and that continued online provision is therefore important (Inklusion, 2023, p. 18). The guide is fairly typical of other comparable initiatives, in the sense that it responds to a lack of state regulation by encouraging people to introduce and abide by alternative rules that offer a greater emphasis of safety and inclusion for everyone, but particularly for disabled people.

One particular focus of initiatives that seek to fill the void left by the UK COVID regulations, has been on air quality in spaces where attendance is compelled in one way or another, particularly workplaces, hospitals and schools. As these are largely run in ways that make it impossible to compel COVID vaccination or testing through measures other than state intervention, the emphasis in this context has been primarily on air quality. As such a whole eco-system has sprung up around efforts to improve air quality. This includes the modification of existing commercial attempts to promote the use of high quality air filters (see e.g., Booker et al., 2024). However, it also extends to much smaller scale DIY efforts. The Clean Air Classroom campaign encourages parents and educators to investigate the air quality in their classrooms using CO₂ monitors (high levels of CO₂ can also indicate a higher risk of COVID exposure) and to then persuade their schools to add air purifiers in schools, with detailed guidance on how one can build an air purifier from scratch. This in many ways encourages individuals, or collectives of individuals to act prefiguratively as if they had the responsibilities for collective public safety normally associated with states or local governments (see e.g., Cooper, 2017), but more specifically they are acting as if they are a state that centres the health and safety of all its inhabitants.

The spaces, be they virtual or in person, that are intended to be created through these measures and processes can be seen in some ways as ‘everyday utopias’ (Cooper, 2014) or are certainly intended as such by their creators. They perform ‘regular daily life’ in a ‘radically different fashion’ (Cooper, 2014, p. 2) in that here they explicitly foreground the need to include disabled people as participants and speakers in events, rather than making this an afterthought as it so often is in other settings. As such they reverse the ‘normal’ structure of such events/spaces where the convenience and needs of non-disabled people are prioritised over those of disabled people. Indeed, one commonality of such guidance documents is that they highlight that in very practical terms as a minimum accessibility information needs to be readily findable for attendees, rather than making this something effectively only available on request (Reed, 2022).

In many ways such attempts at inclusion necessitated a form of despair, both at state efforts to contain COVID and at the failed pandemic-phase of inclusion for disabled people, and a form of perhaps radical hope, rather than what Terry Eagleton (2015) refers to as a kind of vacuous optimism, that things can be better but only if people attempt to make them so and risk failure in the process. As such, here, despair at a lack of inclusion motivated a greater drive to build more inclusive spaces and communities. In this way the engagements of disabled and chronically ill people with the endemic phase of COVID can be read as similar to Vogler's analysis of the US disability rights movement in a secondary way, namely that disabled communities are using the pandemic as a trigger point for ‘acting as if they had an equal right to shape the nature and future of society’ (Vogler, 2024, p. 591) by actively contesting the reversion to pre-pandemic behaviours and practices. This means that even as the government is reverting to a definition of safety that (again) ceases to account for the needs of disabled and chronically ill people, disabled people and organisations offer up competing accounts of safety that challenge this official move or even seek to supplant it. These trigger points involve quite the opposite of ‘dreamy-eyed’ thinking that utopian thoughts is often associated with (Cooper, 2014, p. 130). Instead the initiatives I draw upon here involve an acute attempt to understand the ‘relationship between existing social conditions and change possibilities’ (Cooper, 2014, p. 130). They draw upon behaviours most of the population became familiar with during the pandemic (mask wearing, testing for infections, avoiding others when unwell) to try and mobilise at least small sections of the population to maintain these behaviours, not necessarily to ‘merely’ protect themselves anymore, but rather to ensure that disabled people can be included equally in society. This approach to what is a utopian project in the sense of creating a safer society for everyone is nevertheless intimately tied to failure in two different dimensions. Firstly, this approach is only necessitated precisely because such practices have failed to become or even remain mainstream after what was seen as the acute phase of the pandemic subsided. Secondly, in that the approach itself can be seen to have failed in that it has not led to a large scale social shift in (re-)adopting these practices.

In some ways these initiatives, then, suggest a negative position towards the state and potentially society at large, because they are underpinned by an understanding of COVID as a permanently disabling and potentially fatal pathogen that humanity has entirely failed to curtail, despite the opportunity to do so. As such this perspective may parallel in relation to COVID what Mathias Thaler (2023) terms ‘eco-miserabilism’ in relation to climate breakdown, that is, the idea that a pessimistic outlook on humanity's future due to climate breakdown is both warranted and necessary. Similarly to eco-miserabilism this form of COVID or pandemic-miserabilism, which sees the battle to eradicate COVID and future pandemics as already lost due largely to the failure of the state, also contains a seed of ‘radical hope’ (Lear, 2006) that society can emerge in a different form. Disability communities, with the d/Deaf community being perhaps most notable in this regard, have a long history of responding to failures of inclusion by states and wider societies by creating separate, and at times separatist, spaces that present an alternative vision of what society could look like. Similarly, practices that are not fully separatist but explicitly center the needs of disabled people, such as integrated dance, can have a strong utopian potential in their ability to ‘reshape societal perceptions of disability’ (Hammer, 2024). These spaces present the possibility of re-imagining, and in some ways acting as if, society already values the lives of disabled and chronically ill people differently. By treating health and ability as inherently relational and variable, the demand for COVID safety measures imagines a society that moves beyond the marginalisation of those whose lives are deemed as irrelevant to a neoliberal capitalist society and instead prioritises care for oneself and for each other (Young, 1990). While mainstream inclusion has begun to gradually replace separate spaces or spaces that are very explicitly aimed at including disabled people as in the dance activities Hammer (2024) describes, the particularly dangerous impact of COVID-19 on disabled and chronically ill people seems to have revived efforts to provide separate spaces for these communities as an alternative to the inherent danger posed by taking part in mainstream provision that no longer treats COVID infections as a serious concern. They also fundamentally highlight the role of utopias in offering a critique of contemporary society and practices and in many ways highlighting the limitations of the present. In particular the fact the mainstreaming, even if it is done in a piecemeal fashion, of some disability-inclusion practices that prior to the pandemic were considered too ‘utopian’ to be implemented, the adoption of remote-/hybrid-working for instance, serves as a continuing reminder of the collective societal failure of imagination as to how disabled people can become included. Similarly, the fact that it is possible to continue to run COVID-safe events and spaces even when wider society treats COVID as an endemic low-risk illness, demonstrates the lack of imagination and will in tackling COVID, and other airborne pathogens, more aggressively. Nevertheless, there remains a question of how much impact this critique can hold when it primarily leads to the establishment of separate or separatist spaces, rather than larger-scale social change. One risk is that it will eventually result in practices that become so minoritised that they gradually cease to exist. However, there also remains the possibility that even if such practices fail, in the sense that they do not lead to effective social change in this instance or on this issue, that like many other utopian practices they still offer up ‘blueprints’ for future projects and practices.

Conclusion

Thinking through COVID-safety practices and their relationship to utopia and failure then serves a number of crucial functions. It highlights that despite its profound negative effects the COVID pandemic also offers an unexpected opportunity for the flourishing of alternative visions of society that centre the relational and vulnerability dimensions of disability and chronic illness. As such these practices make an important novel contribution to our understanding of disabled people's utopianism. Engaging with how transhumanist themes and particularly the figure of the Cyborg are reconstituted in COVID-safety practices as a criptopian vision of the future, also allows us to reenvision the role that technology can play in mediating social practices and human relationships. Far from the vision of cybernetically enhanced Ubermensch stereotypes that heavily underpin contemporary discourse about what the future can and should look like, such a criptopia centres the importance of recognising vulnerability and showing care for each other by relying on technology when necessary to augment human capacity.

These practices also contribute to the wider understanding of the connection between utopia and failure, as they are effectively a form of minor, lived, utopianism, which despite its comparatively small scale open up the possibility of lasting social change (Thaler, 2019). Read in this sense COVID-safety practices both during and after the acute face of the pandemic highlight in very practical terms that remote working and socialisation can be crucial practices that allow disabled people to be included in instances when other kinds of adjustment practices are insufficient, particularly for people with energy limiting conditions. They also demonstrate that it is possible to make in-person participation in society safer for everyone, but especially those who are more vulnerable to infection, by taking even minimal steps to improve air quality and continue the use of masking and testing for infections where possible.

In Sargent's words if we understand utopianism as the ‘social dreaming’ of a better society, this does not necessarily have to presuppose the existence of humans without any frailties and vulnerabilities and therefore without disability. Instead of falling into the trap of some Utopian projects, which have been propagated within strands of Disability Studies, that imagine an ‘end to disablement’ in its entirety (Mackey, 2009) reading COVID-safety efforts as minor Utopianism serves a different function. It allows us to imagine a better world for our current populations. As such efforts to improve the inclusion of disabled people in society through alternative spaces and alternative ways of ensuring the safety of everyone in a given space could be seen as embodying Levitas’ definition of utopias as an expression of a ‘desire for a better way of being or of living’ (Levitas, 2013, p. xii). Importantly, such efforts do not imagine a fixed end point. A notable feature of much COVID-safety activism has been the emphasis on the virus as ever evolving and the fact that pandemics are a regular feature of human history and only going to become more frequent due to the impacts of globalisation, climate change and environmental degradation. Hence, contemporary COVID-safety measures are not aimed at achieving some ideal post-pandemic state, but are designed to be a set of constantly modifiable safety measures. In many ways this presupposes over time both the ‘necessary failure’ and the ‘provisionality’ of each safety measure, no matter how utopian it might seem (Levitas, 2007, p. 290). As such the specific example of COVID-safety as a project has echoes of Levitas’ architectural approach to utopia as a method (2013, p. 197). These measures offer a critique of the status quo but they are fundamentally also ‘positive proposals’ (Levitas, 2013, p. 197) for what the future and future spaces could look like and how they could operate.