Paper short abstract:

This paper presents novel findings on public participation in the UK's healthcare system, looking at the work of NHS charities (a distinctive category of organisations which display hybrid ‘state’ and ‘charitable’ institutional logics) and those who support them by fundraising and volunteering.

Paper long abstract:

Literature on public participation in health systems has always foregrounded formal mechanisms designed by authorities to elicit and channel public voice, neglecting ‘quieter’, and also potentially more subversive, modes of participation (Stewart 2016). This paper investigates how publics act in the ‘in between’ realm of NHS charities, a distinctive category of organisations which display hybrid ‘state’ and ‘charitable’ institutional logics (Stewart & Dodworth, 2023). Charitable and voluntary activity has always taken place within the NHS, and there is a widespread understanding that NHS charities provide the ‘add-ons’ or ‘extras’ that cannot be funded through government spending. In practice there exists a significant realm of discretion, and a blurry boundary between healthcare ‘extras’ and necessities. There is almost no scholarship on how members of the public understand their own roles in this hybrid realm of healthcare between community action and the state.

Exploring this question through the lens of affect, particularly Lauren Berlant’s ‘cruel optimism’ (Berlant, 2011), highlights that NHS charities sustain daily practices that help people navigate a diminished healthcare system, and to contest scarcity through avenues not offered by ‘traditional’ policy processes. In a context where state provision of welfare services is gradually but steadily retracting, NHS fundraisers enact an everyday pragmatism that fills service gaps and creates safety nets for communities. This paper provides novel findings on a previously unscrutinised field of public participation, exploring how micro-level, every-day practices of fundraising and volunteering relate to macro-level structural processes within the context of the U.K.’s welfare state.

Paper short abstract:

We analyse how citizen's actions in low-income neighborhoods defy standard expectations of participation and therefore remain invisible. First; through “watchful attendance”, second; the re-definition of neighborhood problems and third; by stepping outside of delineated spaces for participation.

Paper long abstract:

Healthy cities and neighborhoods require the participation of citizens in both understanding what a healthy urban environment means and the ways this can be realised. As part of an ethnographic research project, we started the ‘University-with-the-Neighborhood’ (UwtN) in 2017, a collective for research, action and engagement oriented at promoting a healthy living environment in low-income neighborhoods. While municipal statistics show citizen participation in these neighborhoods to be low, citizens recount and demonstrate actions that are arguably fundamental to a healthy and democratic city.

We analyse three types of invisible participation in the neighborhoods. Their invisibility is not a consequence of secrecy but rather stems from a narrow classification of citizen participation as solving public problems. In contrast, our analysis is guided by the concept of “cosmopolitics” with which Latour (2004) points out that a “same world” is not a given starting point for politics, it can only be a product of construction-work. First, citizens take active note of what happens in their environment, they are the eyes, ears and memory of the neighborhood. Secondly, citizens come together to make sense of their observations and experiences and formulate new understandings of their neighborhood and local problems. Finally, citizens might step out of a delineated space for public participation, into what is considered the domain of professionals.

Not unlike much care work, citizen’s activities that at first sight may appear passive remain unrecognized. However, forms of invisible participation form an inherent part of the urban assemblages that make up a healthy city.

Paper short abstract:

This contribution explores non-logocentric modalities of participation in what I call eco-reproductive labour. Through an analysis ‘ecological’ everyday care work, it highlights the potential of material and non-discursive forms of participation invisibilised in logocentric political cultures.

Paper long abstract:

This paper explores non-logocentric modalities of participation in what I call eco-reproductive labour. It examines the daily activities of reproduction and maintenance of life in a moment of already-here ecological destruction. The study focuses on ‘ecological’ everyday care work: cooking a zero-waste dinner, cleaning with vinegar, saving water during bath time,… Through qualitative work with French households, it interrogates what becomes of daily labours of life-maintenance as those unavoidable labours of life also make one participate in/to bio-destructive logics, and what it means to participate in this context. Thus, setting aside the question ‘are the “small gestures for the planet” political?’, this paper asks: how is it that environmental vulnerabilities crystalise in daily reproductive labour? What forms of participation does this crystallisation produce?

Informed by (eco)feminists, environmental and epistemic justice scholars, Rancièrian theories of radical equality, and ecological thinking, I argue that labours of life-maintenance can function as forms of material participation in/to the material devastation. This is of importance in a moment that has something of the unspeakable: in the impossibility of expressing concern, doing care remains (Puig de La Bellacasa, 2017). First, this paper argues that caring labours question the logocentrism of the Western political tradition which subordinates ‘deeds to speech’ (Rollo, 2017). Secondly, this subordination invisibilises other-than-logocentric forms of participation that are shaped by relationalities of gender, class and race/coloniality. Finally, attentiveness to non-discursive forms of participation is critical in a moment of epistemic uncertainty which questions the very possibility of an (expert) metadiscourse on the catastrophe.

Paper short abstract:

We draw attention to participation in mundane routinized healthcare, considering how home blood pressure self-monitoring is incorporated into clinical care. Drawing on ideas about un/invited and material participation, we consider how participation might be characterised in this context.

Paper long abstract:

STS scholarship concerning the ‘participatory turn’ in healthcare has extended beyond formal, discrete and invited forms of participation to consider new forms of patient collectives and patient-driven innovations. By contrast, this paper looks at participation in mundane, routinized healthcare. It focuses on blood pressure self-monitoring, understanding this as a form of patient participation at the level of individual care.

Drawing on a UK study involving people who self-monitor blood pressure, and primary care professionals, we examine how home blood pressure self-monitoring is incorporated into clinical care. The research suggests that clinicians may invite their patients to self-monitor in circumscribed ways in order to make this manageable within the constraints of the clinic. In this way, patient participation is ‘made easy’ (Marres, 2012) for both patients and clinicians, containing the investments required of both. Yet, through these practices, some patient concerns get lost. By contrast, sometimes patients’ participation is uninvited in the context of the clinic, when people use their self-monitoring as a way to raise their own concerns. This involved delicate and sometimes invisible patient work to pursue these concerns within the constraints of clinical consultations.

Our analysis illustrates how materials are mobilised to facilitate or constrain participation. It also suggests that invited and uninvited participation are not always distinct and separate, as we observed movement between these. Ultimately, in the context of policy imaginaries about the transformative potential of patient participation, the study raises questions about the scope for and practices of patient participation in routine healthcare.

Paper short abstract:

This paper tries to address participatory processes by thinking through Clandestine Publics: the mutual entanglement and disturbance of two seemingly contradictory practices and/or goals: making things public and keeping things secret, or clandestine.

Paper long abstract:

Participatory processes have to do more than figure out ways to reach wider publics: they also need to find better ways to conceal certain things from certain people. This paper tries to address this problem by thinking through Clandestine Publics. The idea of “clandestine publics” (Nowotny 2005) is only at first sight an oxymoron. Making things public is based not only on disclosing, but also on concealing. We understand Clandestine Publics as the mutual entanglement and disturbance of two seemingly contradictory practices and/or goals: making things public and keeping things secret, or clandestine. The term Clandestine Publics helps us link publics to questions of exclusivity, and to explore the subtleties of things that are being hidden, yet communicated. The key idea of this paper is that participatory processes might profit from developing an understanding of Clandestine Publics, and possibly even develop an idea of a Clandestine Participation. In this presentation we will firstly look at some empirical examples: A queer feminist call to illegal action, a secret artwork, and a case of fascist dog whistling. In the second step we extrapolate out of these examples some methodologies of doing Clandestine Publics. In the third and final step we analyse the potential of such methodologies for extended forms of participation.

The Clandestine Publics Research Collective consists of anthropologists, artists, and activists (often in multiple roles).

Paper short abstract:

This paper interrogates public participation and invisibility within the context of the digital expository society (Harcourt, 2015) through artistic case studies of the work of Zach Blas, Hito Steyerl, and Paolo Cirio.

Paper long abstract:

Utilizing case studies of surveillance art that centralize public participation, this paper interrogates opacity and invisibility in the context of the digital expository society (Harcourt 2015). According to Bernard Harcourt, we no longer exist within the context of the disciplinary (Foucault 2012 [1975]) or control societies (Deleuze 1992) where subjection was facilitated by centralized and decentralized surveillance respectively. Rather, we are immersed in the neoliberal and digital condition of the expository society, where subjection is facilitated by encouraging self-exposure and techniques of continuous surveillance. Encouraged along by our own fantasies and pleasures, we willingly engage with interactive platforms and disclose personal information, providing fodder for the markets that subject us.

How does invisibility become a strategic way to reimagine public participation beyond its perversion in the expository society? Artists Zach Blas, Hito Steyerl, and Paolo Cirio interrogate the current predicament of public participation and propose creative solutions to avoid subjection grounded in invisibility and opacity. From evading biometric facial recognition technologies through amorphous masks (Blas), to obscuring mugshots on the internet (Cirio), these artists grapple with technologies that interpolate us into compulsive forms of participating. This paper will consider the work of these artists to argue that the ideals of public participation need to be reframed within the current juncture marked by an uneven distribution of privacy and the right to choose or refuse participation.

Paper short abstract:

People in vulnerable situations (PiVS) are underrepresented in decision-making processes on medical innovations. Who PiVS are and where to find them remains challenging. Through participating in activities already out there and focus groups, I study how and why PiVS participate in digital screening.

Paper long abstract:

People in vulnerable situations (PiVS) are underrepresented in decision-making processes regarding medical innovations. Researchers and policymakers often regard them as ‘hard-to-reach-groups’ because their voices remain invisible in deliberative practices e.g. discussion panels or letters of protest. I study participatory practices of PiVS within the Check@Home consortium. Check@Home aims to prevent chronic diseases through digital home-based screening.

Participation of PiVS in Check@Home is considered important by medical scientists for the potential health improvements in these groups. Through participant observations and focus groups, I study how and why PiVS participate in digital screening.

Who PiVS are and where to find them remains challenging. My participant observations show how Check@Home’s assumptions on the meaning of vulnerability matters for recruitment strategies. My recruitment follows Horstman & Knibbe (2022) by focusing on low-income neighbourhoods. I participated in activities already out there (Pols 2023), e.g. at community centres and an e-health information bus that drives to low-income neighbourhoods. PiVS where hesitant to discuss sensitive topics, e.g. disease and (digital) literacy, with a researcher. Participation of PiVS requires building trust and networks. The focus groups showed that PiVS could be excluded when digital home-based screening is introduced. They are less digitally literate and fear of missing out on health care because of its digital nature. I use the work on (non)users in STS (e.g. Wyatt 2003, Wiener & Will 2016) to make sense of these findings and argue that exclusion of users has different levels, mediated by abilities and decisions of developers on the design of technology.

Paper short abstract:

Sometimes collective attempts to address matters of concern avoid publicity. This paper analyses a case of hiding participatory action in a situation of explicit hostility to participation and focuses on the role of digital media in mediating both, the action, and its concealment.

Paper long abstract:

Public participation tends to be conceptualized as dependent on making issues visible and debatable. Yet, some collective attempts to address matters of concern avoid publicity and, consequently, scholarly attention. This paper analyses a case of hiding participatory action in a situation of explicit hostility to it and focuses on the role of digital media in mediating both, the action, and its concealment. The case is a network of Russian-based volunteers whose action to support displaced Ukrainians is mediated by a messaging app Telegram. There is no identifiable organization or formal authority to enroll members into this network and coordinate them. Rather, the network is decentered, shifting, emergent and loosely connected. Drawing on participant observations in group Telegram chats and 40 interviews with the volunteers, I elaborate how technological particularities of the app and situated practices of its usage afford relative public invisibility of the volunteers’ work. This paper, thus, contributes to the affordances scholarship by highlighting that affordances of digital technologies are not immanent properties of technologies themselves but something that is co-produced in the process of interaction of users and the app in specific circumstances. Further, this paper contributes to understanding depublicized public participation. Practices of endangered collectives I focus on here generate novel solidarities yet being hidden they do not stimulate a public debate and engagement between opposing viewpoints. Instead, those with conflicting commitments attempt to gravitate as far from each other as possible, but remain tied unable to escape their joint implication in the issue of war.

Paper short abstract:

This paper examines a case of research on organoids to highlight some of the temporal, social and material practices required to successfully enact accepted forms of public participation. The relevance of these practices remains invisible to local institutional appraisals of public participation.

Paper long abstract:

Although increasing appreciation for practices of public participation in research has emerged in both academic fields like STS and governance reforms around research policy, funding and institutional management, these contexts can carry different conceptions of what public participation actually is and what it requires.

This paper presents findings from qualitative research amongst three biomedical research groups working in an institutional context where public participation is heavily promoted as a key ingredient to ‘relevant’ and ‘impactful’ research. It focuses on the work of one group engaged in research through so-called organoids and reconstructs how this research has come to be regarded as a highly successful example of public participation in research. This analysis highlights the importance of particular temporal, social and material practices and factors in successfully enacting publics and participation, which typically remain invisible in the general perspectives on public participation presented by local institutional managers and researchers themselves.

The paper argues that the prevalent understanding of public participation within this particular biomedical institutional context is notably realist. It entails a view of participation as a kind of positivist science, where a particular set of accepted methods can be used to uncover ‘truths’ about pre-existing publics (which should then inform research). This view keeps multiple forms of enactment work relevant to the successful practice of public participation hidden from sight, which in turn has important consequences for what kinds of participatory practices are recognized, what research is valued and rewarded, and even what topics researchers are willing to take up.

Paper short abstract:

This presentation discusses the experience of social participation and social acceptance that took place during the implementation of the Xingu Sustainable Regional Development Plan – PDRSX, in Amazon region

Paper long abstract:

Alongside the management councils (set up as local state policy), numerous ad hoc experiments in social participation have taken place in Brazil as national government policies, such as the implementation, in 2010, of the Xingu Sustainable Regional Development Plan – PDRSX. It aimed to minimize regional inequalities by implementing actions of regional development in municipalities affected by the Belo Monte, the third biggest hydropower plant in the world. This presentation discusses the experience of social participation and social acceptance that took place during the implementation of the PDRSX, a government policy, and how it was articulated with the existing management councils, a state policy. We analyze some of the dilemmas of social participation and social acceptance pointed out in the literature. Through the PDRSX and the minutes of COMAM (Altamira Municipal Environmental Council), we analyze the configuration of social acceptance in the region affected by Belo Monte hydroelectric dam and its impact on accountability for the control and continuity of the project.

We analyzed the institutional documents of the PDRSX, the memories of the Technical Chambers of Infrastructure and Development, Indigenous Peoples and Traditional Populations, and Health from June 2013 to August 2018. Additionally, interviews with social actors and municipal employees were conducted from 2013 to 2022, along with an analysis of Altamira's COMAM minutes from 2009 to 2022. The PDRSX case reveals a disconnect between state and government policies, nebulous public-private sector relations, and limits of social participation. Participatory development lacking interdependent relationships with existing mechanisms risks long-term inefficiency.

Paper short abstract:

Grounded in the case study of hypoallergenic dogs this paper tracks how the expansion of participation to nonhuman animals is entwined with the contraction of counterpublic activism, due to a valorisation of methods and conceptual frameworks that centre embodiment, proximity and affect.

Paper long abstract:

Over the past two decades, a prominent strand of STS has emphasised the agency of nonhuman beings and sought concrete ways of enabling nonhumans to participate in formulating matters of concern: from Latour’s ‘parliament of things’, to uses of participatory and sensory methods to make the desires of nonhuman animals legible. In this scholarship, aspiration to facilitate more politically inclusive approaches toward animals has resulted in an emphasis on curiosity and attentiveness to embodied relations as ways of registering agency. These developments are often understood in a positive light. The emphasis on knowledge generated through attentive, embodied relations has (seemingly) generated radically inclusive approaches to expanding what participation means. These approaches have contested the invisibility of nonhuman animals who have traditionally been unable to engage in narrow deliberative, discursive models of participation, or, worse, whose agency has been erased by human proxies who presumed to speak for them.

In contrast, this paper turns to emerging conflicts about the rise of ‘hypoallergenic dogs’ – which have enrolled companion species, veterinary professionals, activists, and gig workers in controversies about new breeding practices – to foreground exclusions in apparently inclusive depictions of nonhuman animal participation. Through this controversy, the paper traces how apparently radical expansions of participation beyond ‘the human’ are entwined with contractions in how contentious, counter-public activism is perceived to participate in political debates about nonhuman animals. It concludes by articulating how scholarship on the role of complicity (Shotwell; Williams and Hollin), incommensurability (Liboiron), and indifference (Davé) can offer alternative trajectories.