# Manufacturing Refused Knowledge in the Age of Epistemic Pluralism

Discourses, Imaginaries, and Practices on the Border of Science

*Edited by*  Federico Neresini · Maria Carmela Agodi Stefano Crabu · Simone Tosoni

## Manufacturing Refused Knowledge in the Age of Epistemic Pluralism

Federico Neresini • Maria Carmela Agodi Stefano Crabu • Simone Tosoni Editors

# Manufacturing Refused Knowledge in the Age of Epistemic Pluralism

Discourses, Imaginaries, and Practices on the Border of Science

*Editors* Federico Neresini Department of Philosophy, Sociology, Education and Applied Psychology University of Padova Padova, Italy

Stefano Crabu Department of FISPPA University of Padova Padova, Italy

Maria Carmela Agodi Department of Political Science University of Naples Federico II Napoli, Italy

Simone Tosoni Department of Communication and Performing Arts Università Cattolica del Sacro Cuore Milano, Italy

ISBN 978-981-99-7187-9 ISBN 978-981-99-7188-6 (eBook) https://doi.org/10.1007/978-981-99-7188-6

© Te Editor(s) (if applicable) and Te Author(s) 2024. Tis book is an open access publication.

**Open Access** Tis book is licensed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence and indicate if changes were made.

Te images or other third party material in this book are included in the book's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the book's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder.

Te use of general descriptive names, registered names, trademarks, service marks, etc. in this publication does not imply, even in the absence of a specifc statement, that such names are exempt from the relevant protective laws and regulations and therefore free for general use.

Te publisher, the authors, and the editors are safe to assume that the advice and information in this book are believed to be true and accurate at the date of publication. Neither the publisher nor the authors or the editors give a warranty, expressed or implied, with respect to the material contained herein or for any errors or omissions that may have been made. Te publisher remains neutral with regard to jurisdictional claims in published maps and institutional afliations.

Tis Palgrave Macmillan imprint is published by the registered company Springer Nature Singapore Pte Ltd.

Te registered company address is: 152 Beach Road, #21-01/04 Gateway East, Singapore 189721, Singapore

Paper in this product is recyclable.

# **Acknowledgements**

Research for this book was made possible by a grant from the Italian Ministry of University and Research (PRIN 2017B434E8\_003—Progetti di Rilevante Interesse Nazionale) for the project 'Social factors and processes afecting the acceptance of fake scientifc knowledge'.

Te project was led by the University of Padova (Padua), in collaboration with the Politecnico di Milano (Milan), Università di Napoli Federico II (Naples) and Università Cattolica del Sacro Cuore (Milan).

We are very grateful to the anonymous reviewers for their invaluable comments on the book proposal and support for the development of this editorial project. We would also like to thank Isabelle Johnson for her precious help in revising the English version of this text.

# **About This Book**

Te COVID-19 pandemic has clearly shown how knowledge refused by scientifc institutions can be endorsed by diverse segments of our societies for addressing health, illness, and well-being. Despite this sharp evidence, the understanding of current cultural perspectives and discourses questioning the epistemic authority of science tends to be jeopardized by a normative view that reduces such refused knowledge to an irrational and deviant mindset to be opposed in order to preserve democracies and the well-being of our societies. Assuming an agnostic analytical stance over its epistemic value, this book aims to analyse the processes through which refused knowledge receives epistemic credibility, which people are engaged in such processes, how they relate with prevailing epistemic institutions and in which ways they practically enact a body of refused knowledge in their everyday lives. Te book, drawing on an extensive three-year mixed-method empirical research, shows that it may be less helpful to frame the contestation of the authority of science in terms of an irrational "zeitgeist", than to treat refused knowledge as a more peculiar mode of knowing the world and ways of addressing the uncertainties that inevitably afect our everyday life. Indeed, people involved in social worlds within which refused knowledge plays a pivotal role engage a complex dialectic with prevailing scientifc institutions that are increasingly embedded in a societal landscape featured by an epistemic pluralism.

#### **viii About This Book**

As a consequence, *taking refused knowledge seriously* helps not only to better understand the legitimation processes that confer credibility to knowledge claims otherwise refused, but also to analyse how knowledge is, at large, the result of sociotechnical assemblages. Te book thus ofers a relevant contribution for scholars and students from a range of disciplines interested in the understanding of the changing relations between science, expertise and society, including Science and Technology Studies, Sociology, Media Studies, Cultural Studies, and Anthropology. At the same time, it also speaks to a wider audience concerned with the public debate over the supposed crisis of scientifc expertise in the post-truth era, as well as the current mistrust towards the political and scientifc establishment and their knowledge.

# **Contents**



**Index** 299

# **Notes on Contributors**

**Maria Carmela Agodi** is Professor of Sociology and Science & Technology Studies at the Department of Political Sciences, University of Napoli Federico II (Italy). Her recent research interests and works focus on the epistemological and sociomaterial dimensions of robotic surgery research, anti-ageing medicine and practices, and the institutional impact of global research regulation and evaluation practices at the local level.

**Paolo Bory** is Assistant Professor of Sociology of Culture and Communication at the Department of Design, Politecnico di Milano. His research interests deal with the history, the imaginaries and the narratives surrounding digital media, science and technological change. He is also researching on the founding imaginaries of refused knowledge communities and on the circulation of non-reliable scientifc information on online platforms. He is the author of *Te Internet Myth. From the Internet Imaginary to Network Ideologies* (University of Westminster Press, 2020).

**Stefano Crabu** is a science, technology and medicine sociologist at the Department of Philosophy, Sociology, Education and Applied Psychology, University of Padova. He studies scientifc and technological innovation processes in the life sciences and ICT. His recent research and publications centre on the sociomaterial and epistemological aspects of translational biomedicine, laboratory practices and hacking practices.

**Paolo Giardullo** is Assistant Professor of Sociology at University of Padova. He has a long experience in studying public representations of technoscientifc issues in the public sphere about controversies and analysing public discourse about environmental issues. More recently he is working on non-expert contribution into scientifc knowledge-making processes through the critical analysis of citizen science. In dealing with these topics, he applies a mixed-methods research approach in connection with digital methods.

**Barbara Morsello** is Assistant Professor of Sociology at the University of Padova. Her research interests deal with the relationship between biomedical innovation and everyday life, with a focus on knowledge coproduction and ICT. She worked at Fondazione Bruno Kessler within the Health & Well Being Lab and collaborated, as a scientifc coordinator, with the National Cancer Institute Regina Elena (IRE) on a project about cancer prevention.

**Federico Neresini** is Professor of Digital Sociology at the University of Padua, where he also teaches Sociology of Innovation. He is the coordinator of the PhD Programme in "Social Sciences" and of the PaSTIS Research Unit (Padova Science, Technology and Innovation Studies) at the University of Padova. His main research interests are in the feld of science and technology studies, with a special focus on construction processes of scientifc knowledge and on science in the media, mainly focusing on biomedical research, nanotechnology and other emerging technoscientifc domains. During the last few years his research activities are also addressing the relationship between big-data and scientifc research activities, as well as the implications for the social sciences of the availability of large amounts of data through the web.

**Ilenia Picardi** is Assistant Professor of Sociology at the University of Naples Federico II, Italy. Her research activity focuses on Science and Technology Studies, and she mainly works on issues related to the social implications of techno-science, intersectionality in scientifc research and academia. Currently she is responsible for managing the thematic area "Gender Studies in Science and Technology" within the "Gender Observatory on University and Research" at University of Naples Federico II.

**Luca Serafni** is a media and communication sociologist working at the Department of Political Sciences, University of Naples Federico II. His main research interests deal with changes in journalistic narratives and practices on digital platforms and the aesthetic dimension of digital technologies. He is currently working on forms of knowledge and epistemological implications of journalistic practices such as fact-checking, using a Science and Technology Studies approach.

**Marco Serino** is Assistant Professor of Sociology at the Department of Political Sciences, University of Naples Federico II, Italy. He has also been a visiting research fellow at the School of Business and Management of Queen Mary, University of London. His research interests range from the sociology of culture and the arts to social network analysis, social research methods and, more recently, the sociology of scientifc knowledge. His recent work is mainly concerned with the application of network theory and analysis on the production of knowledge in artistic and scientifc felds.

**Simone Tosoni** is an associate professor at the Department of Communication and Performing Arts at Università Cattolica del Sacro Cuore, Milan, where he teaches courses on the sociology of cultural processes and digital media. He is currently working on the hybridization of media and machines, on social robotics, and the online circulation of knowledge refused by the scientifc community. His publications include *Entanglements. Conversations on the Human Traces of Science, Technology, and Sound* (MIT Press, 2017, with Trevor Pinch).

**Paolo Volonté** is Associate Professor of Sociology of Culture and Director of the META Study Unit (Social Sciences and Humanities for Science and Technology) at Politecnico di Milano. He is especially interested in the Sociology of Scientifc Knowledge and has carried out a laboratory study on High Energy Physics and a study about the social felds of Physics and Philosophy. His recent publications address the role of experts in the stabilization of technoscientifc knowledge.

# **List of Figures**


#### **xvi List of Figures**


# **List of Tables**


#### **xviii List of Tables**


# **1**

# **Introduction: Manufacturing Knowledge at the Border of Science**

**Stefano Crabu, Federico Neresini, Maria Carmela Agodi, and Simone Tosoni**

## **1.1 Introduction: Manufacturing Knowledge at the Border of Science**

Tis book focuses on a timely and currently highly controversial topic with considerable resonance in academic circles, amongst policymakers and in the broader public sphere. Te central research question it explores is: How and under which conditions do groups of people assign credibility and trust to knowledge claims located outside the established boundaries

S. Tosoni

S. Crabu (\*) • F. Neresini

Department of Philosophy, Sociology, Education and Applied Psychology, University of Padova, Padova, Italy e-mail: stefano.crabu@unipd.it

M. C. Agodi Department of Political Science, University of Napoli Federico II, Napoli, Italy

Department of Communication and Performing Arts, Università Cattolica del Sacro Cuore, Milano, Italy

of science? Tis research question was the focus of a wide-ranging research project which began in 2019. Almost no-one anticipated the transformative potential of the pandemic events that unfolded a few months later. Te COVID-19 pandemic, which undeniably changed our lives, completely redefned the general research landscape in which the project was to have been carried out. However, as the well-known adage goes, every cloud has a silver lining. Te exceptional nature of the pandemic situation turned out to be an extremely interesting opportunity to address the research question mentioned above, since it brought out the processes we wanted to study even more clearly. In other words, the pandemic was a chance to shine the spotlight on the circumstances under which concerned groups of people challenge the legitimacy of techno-scientifc expertise as the unique domain with which individual and public health issues and broader societal challenges can be responded to.

Contemporary practices contesting scientifc knowledge claims and advice have recently been at the core of various scholarly and public debates, opening up space for a heated debate over the reconfguration of the nexus between science, technology, democracy and society (see Armstrong & Naylor, 2019; Ball, 2017; Bory, Crabu, et al., 2022; Bory, Giardullo, et al., 2022; Crabu et al., 2023; Lynch, 2020; McIntyre, 2018; Pellizzoni, 2019). It is worth highlighting that questioning scientifc knowledge is a multifaceted phenomenon cutting across a range of diferent issues and public concerns, such as institutional public science communication practices and public engagement models; the current role of digital technologies and social media platforms as information hubs; the demand for greater transparency in scientifc research and its governance; and the relationship between scientifc research, technological developments and social justice.

Hence, the questioning of science and techno-scientifc expertise cannot be simply dismissed as a mere rebranding of old forms of scientifc illiteracy or the product of alleged distorted media representation of science. But there can be no doubt that the COVID-19 pandemic has clearly shown how important the forms and practices of opposition to scientifc knowledge are to the biomedical domains and public health in general. Since the beginning of the COVID-19 pandemic, a growing number of groups of concerned people have developed alternative knowledge claims regarding how to manage health and well-being outside the scientifc epistemic borders, thus questioning science-based advice and rules (e.g. physical distancing measures, mandatory use of personal safety protection devices, vaccine policies) implemented to combat the dissemination of the virus. Tey thus challenged the exclusive authority of scientifc communities, biomedical institutions (e.g. health agencies and medical associations) and gatekeepers of truth (e.g. science journalists

and public intellectuals) in interpreting the pandemic and deciding how to manage it. In so doing, they strongly questioned the legitimacy and suitability of science-based governance models in dealing with emerging societal issues.

In this respect, recent research has demonstrated that this critical, or at least distrustful, attitude to scientifc knowledge and advice is more than simply a contingent reaction to the COVID-19 global outbreak and containment policies (Butter & Knight, 2023; Crabu et al., 2023; Prasad, 2022). Rather, during the pandemic, the strong and, to a certain extent, unprecedented public visibility gained by groups of people claiming legitimacy for action outside the boundaries of science was, in many respects, a kind of litmus test for a phenomenon—that is contesting techno-scientifc authority—rooted in long-term social issues concerning: (1) the dynamics of public trust and mistrust in the ability of technoscientifc expertise to address and solve the potential unintended risks and (social and ethical) consequences arising from technoscience-driven innovations (see Beck, 1992; Oreskes, 2019; Weingart, 2023) and (2) the growing consensus among both ordinary people and communities of healthcare professionals regarding the utility of alternative models of caring and healing (Brosnan et al., 2018; Vuolanto et al., 2020). Consider, for example, how well-controlled diseases are breaking out once again in highly developed countries due to distrust of vaccination policies; or that, in 2018, the American Society of Clinical Oncology's second annual National Cancer Opinion Survey showed that nearly four in ten US citizens (39%) believe cancer can be tackled with alternative therapies such as enzyme and oxygen therapy, diet, vitamins and minerals alone (National Cancer Opinion Survey, 2018)—despite strong scientifc evidence that patients with common cancers choosing to treat them with alternative medicine only are 2.5 times more likely to die of it than patients receiving standard cancer treatments (Johnson et al., 2018).

In fact, the history of science and scientifc medicine is packed with, if not actually made up of, conficts between diferent professional and social groups, some of which have been expelled from the institutional boundaries of prevailing scientifc and medical communities (Woodward & Richards, 1977). Although alternative scientifc and medical knowledge has been studied since the 1980s, particularly within the social studies of science feld (see Collins & Pinch, 1982; Nowotny & Rose, 2011; Wallis, 1979), the prevailing perspective in social science research programmes and public debates is still that suspicion and distrust from an 'irrational' and 'dangerous' mindset (on this point see Harambam's seminal critique, 2020a). In recent research, this view has also fed a widespread concern that the increasing inclusion of digital platforms in all our daily practices and routines has allowed deception and misinformation cultures to proliferate (Del Vicario et al., 2016; Vosoughi et al., 2018; West & Bergstrom, 2021; Zarocostas, 2020). Within this scenario, in various media contexts (both legacy and digital), academics, political analysts and policymakers worldwide have advocated for the reafrmation of the centrality of the 'light of reason' as the sole guiding principle in both individual and public decision-making processes, defending it against what they see as an irrational and uncritical acceptance of fraudulent, counterfeit and inaccurate information. Accordingly, individuals or groups of people who question the monopoly of techno-scientifc expertise, as well as its pertinence to both societal and technoscientifc issues, are often accused of undermining the very principles of 'Western' scientifc rationality through the dissemination of fake news, deceptive information and conspiracy theories.

In this interpretation, traditional epistemic institutions and gatekeepers of truth are losing their monopoly on public (health) issues, and in this process, so-called malicious agents—alternative healers, cult leaders and misinformed people—have begun spreading their own non-scientifc claims and counter-knowledge. Accordingly, many analysts, institutionally recognised experts and members of scientifc communities have argued that advanced democracies are falling into a state of emergency due to social media-based infodemics (Zarocostas, 2020), changes in the professional structure of scientifc journalism and increasingly misinformed populations. In their view, this state of emergency takes the form of open confict between scientifc experts, policymakers, business lobbyists, and concerned groups of people questioning the legitimacy of science's claim to defne what *nature* and *society* are and how societies should be governed.

Whilst stopping the circulation of fraudulent or inaccurate claims is an urgent concern, analytically speaking what is most deserving of attention is the increasingly important role played by Western scientifc institutions and their representatives in the governance of societal challenges which have become subject to contentious social and political dynamics. Tese dynamics recall the well-known paradox of scientifc authority (see Bijker et al., 2009), according to which in contemporary times, demand for scientifc guidance spans a wide spectrum of topics, encompassing areas such as energy production and genetically edited organisms (including humans). However, paradoxically, it appears that the greater the urgency in seeking scientifc advice, the more sceptical policymakers, stakeholders and the general public are of scientifc authority. Hence, at the core this paradox is the claim to the right of other forms of expertise, besides scientifc knowledge, to exist and be mobilised in response to public issues, thus shaping a perspective by which true and useful knowledge does not necessarily correlate with scientifc epistemology.

In this respect, current cultural perspectives questioning the monopoly of science are strongly stigmatised by various academics and public commentators, as was apparent during the COVID-19 pandemic in particular. Tese argue that a critical stance regarding science is inherently irrational and dangerous and, as such, must be opposed in order to preserve democracies and the well-being of our societies (Ball, 2017; D'Ancona, 2017; McIntyre, 2018). Tus, contemporary forms contesting the epistemic authority of biomedicine, and techno-scientifc expertise more generally, have been framed as publicly devaluing the very concept of 'truth' and challenging 'the existence of reality itself' (McIntyre, 2018, p. 10). More particularly, in social and political studies exploring the changing relationship between expertise and society, this position is extremely evident amongst those cultivating a wide-ranging research current regarding the emergence of a 'post-factual/post-truth society' (see Farkas et al., 2017; Fuller, 2018; Giusti & Piras, 2021) as an era dramatically dominated by fake news-making processes and in which objective facts are less infuential in shaping public decision-making and individual choices than personal beliefs and individual experiences.

While the post-truth debate has revitalised discussions concerning the legitimacy and public implications of social studies in exploring scientifc and expert knowledge, it should be recognised that reducing such a complex phenomenon to mainstream labels such as 'post-factual', 'fakers' or 'anti-science' can pave the way for a normative analytical strategy that seeks to distinguish diferent forms of knowledge by applying the same scientifc rationality demarcation criteria. In our view, this analytical stance risks reiterating *naïf* accusations of irrationality without elucidating the existing social relations between science and other competing forms of knowledge and expertise, as well as neglecting the cultural and material conditions behind the emergence of a contentious relationship between science and concerned groups of people. Delving even deeper into this point, it is worth highlighting that a normative analytical stance risks assuming that any scholar writing about knowledge and people with a contentious relationship with science inevitably takes on one of the following two irreconcilable roles: 'dangerous advocate of irrational claims' or 'upstanding gatekeeper of Western rationalism'. Te former consists of legitimising allegedly anti-scientifc stances, and the latter contributes to restoring the light of reason to its rightful place and uncovering the hidden dangers involved in questioning science and techno-scientifc expertise. Hence, the idea that knowledge-making processes on the margins of science should be studied by adopting an agnostic stance—that is without passing judgement on their ethical value or assessing whether a given belief is 'rational' or 'true' according to prevalent scientifc criteria—may be regarded with suspicion as a covert attempt to legitimise potentially dangerous and irrational mindsets.

Tis crucial point was recently re-examined by Jaron Harambam (2020a) in an exploration of contemporary conspiracy culture. In his book *Contemporary Conspiracy Culture*, Harambam seeks to adopt a symmetrical stance, addressing alternative forms of knowledge without explaining them through causal factors like cognitive biases, scientifc illiteracy or emotional drivers. In this way, Harambam urges social scientists to agnostically consider the multifaced perspectives of people and communities supporting alternative knowledge with a view to understanding the processes spawning controversies around certain claims and issues. In Harambam words, this can be done by 'taking a stance without taking sides' (p. 235). As the author clarifes, if 'I may side with conspiracy theorists on *procedural* terms, I do not (necessarily) side with them on *substantial terms*' (p. 238; author's emphasis). In other words, it is the drivers that push people not to believe certain sciencebased claims—or at least to view them sceptically—not the content of the knowledge per se that are of interest to social scientists. Such a perspective, however, may pose a contradiction between what Harambam calls 'normalization'—there is nothing wrong or deviant in the way social and natural worlds are understood outside the epistemic border of science—and 'stigmatization'—knowledge production outside the borders of science is dangerous because it supports possibly deviant behaviours and undermines the relevance of technical and scientifc expertise and science-based policymaking. In disentangling this contradiction, Harambam proposes to contextualise contemporary conspiracy culture within its 'social, cultural, and political settings' so that 'the two supposedly contradictory developments of conspiracy culture (normalization and stigmatization) may not only be both true, but, paradoxically, may even be reinforcing each other' (p. 10). In other words, a perspective by which both science and other competing forms of knowledge are analytically grasped without prejudice, and treated impartially, is crucial, i.e. it is not social scientists' job to judge knowledge (scientifc or otherwise) in terms of truth or falsity but rather to explain its emergence and stabilisation and, potentially, the socio-technical process through which bodies of knowledge acquire epistemic authority.

Against this backdrop, it might be said that this book is located within the same analytical framework elaborated by Harambam (2020a, 2021) but it widens its feld of enquiry also to other, not (necessarily) conspiracist groups. What the book thus attempts to do is to overcome a defnition of conspiracy theories that may be simultaneously too broad (as Harambam himself recognises that the conspiracy label encompasses many diferent things) and too narrow (not all alternative knowledge claims can coalesce in the conspiracy category). In this respect, the frst focal point of this book is that contemporary science contestation practices play out at the epistemological level, as communities and groups of concerned people shape and share knowledge claims while adopting an ambivalent relationship with science and various epistemic institutions. Diferent social values and objectives can shape mutual incompatibilities or incommensurable confrontations between scientists and those that contest their epistemic authority, while in other cases disagreement may only be partial.

A second focal point concerns the role played by internet-based digital, networked and social media technologies in sustaining communication processes in which interpersonal relationships allow people to share information and lay knowledge, and build communities as critical resources in practices questioning science. Indeed, digital and social media technologies cannot be considered merely communicative spaces with which to disseminate 'alternative', and 'non-scientifc' knowledge and facts; they are also an interactional setting that co-shapes individual and collective subjectivation processes, future scenarios, mutual recognition and collaboration, as well as the collective actions of those who—for various reasons—do not precisely align with the prevailing scientifc visions and representations of the world, as the COVID-19 pandemic clearly highlighted (Prasad, 2022).

By considering these two interrelated focal points, this book will show that science and competing forms of knowledge are not two well-bounded entities but rather two possible poles on a continuum in which the social, political and epistemological processes of defning the relationship between expertise, science, technology and society are located. In this way, the volume aims to take seriously Harambam's recent and extremely urgent call (2020b) to Science and Technology Studies (STS) scholars to conduct feldwork on science contestation practices and cultures, moving 'beyond prevalent simplistic oppositions between science vs politics, facts vs opinions, information vs manipulation, solidarity vs freedom, public health vs economy, lockdowns vs viral explosion' (Harambam, 2020b, p. 61).

Teoretically speaking, this book is primarily rooted in the STS feld, and proposes an integrated perspective intersecting the Social Worlds Framework (SWF; see Clarke & Star, 2008) with the major analytical standpoints developed by Actor-Network Teory (ANT)—namely its agnosticism regarding who or what has agency—which generates a focus on the relations made and remade between human and non-human entities forming part of the social world under examination (see Callon, 1984; Latour, 1987).

Te SWF allows us to identify and investigate science-contesting cultures in collectivities, where relatively coherent sets of shared commitments, practices, norms and knowledge may operate through interactions and specifc socio-technical arrangements. In this respect, by crossfertilising SWF with ANT (see Chap. 2 by Federico Neresini), the volume will consider both the social and technological conditions behind science-contestation cultures, in order to grasp the ways in which scientifc knowledge and science-based ordering processes are questioned by human-nonhuman assemblages. Within this theoretical framework, our aim is to mobilise an agnostic analytical positionality allowing us to set aside a priori assumptions about the nature of assemblages, causal conditions and the accuracy of actors' accounts. Tus, soliciting impartiality, this positionality aims to critically reconsider and overcome ingrained juxtapositions between truth/falsity, rationality/irrationality and science as neutral/science as revolutionary. Te book will hence embrace the 'symmetry postulate' (see Lynch, 2017), recently re-examined in the STS feld to suggest an analytical approach to examining knowledge-making practices without privileging any one kind of statement over others, or normatively labelling specifc claims as true or false. As David Lynch has, in fact, argued:

Te […] contrast between 'objective facts' and 'appeals to emotion and personal belief' does not quite capture the challenge to science in the current era. Instead of an outright rejection of science and objectivity, what is involved is an efort to produce adversarial claims to objectivity and institutional support for those claims. (Lynch, 2020, p. 50)

Trough this lens, science contestation practices—involving both human and non-human actors—are framed as an emerging outcome of networking activities shaping social worlds that are both enacted and transformed through intra-action processes (Barad, 2007). Tese processes can also re-confgure the composition and conditions of concerned social worlds, thus shaping the knowledge and material background for the emergence of new broad substantive arenas made up of multifold social worlds.

From this perspective, the aim of this book is to explore how this networking activity comes into being, which kinds of social worlds it constitutes, how social worlds come to be made up of human agents and (media) technologies as well as by segments of scientifc communities and their opponents, how actors are enrolled into social worlds, how parts of social worlds can be re-assembled to form new ones, and how social worlds can temporarily achieve stability, shaping and sharing what we label 'refused knowledge' (RK), i.e. a body of knowledge partially or totally refused by institutional and scientifc authorities. Accordingly, the volume explores both how RK is produced as 'matters of fact', circulated and entrenched, but also how it can be reworked as 'matters of concern'.

In actual fact the notion of refused knowledge embodies the theoretical and refexive approach pursued within this book. When we started the feldwork from which this book derives, we engaged in in-depth discussion within the research team about the 'right words' to use in talking about current challenges to science. In our search for the most suitable words, we opted to agnostically unfold the process of shaping and stabilising refused knowledge, that is, a body of knowledge around which some segments of society fnd a common space for action and sensemaking by bringing together their issues of mutual concern. We refer to this space in terms of 'communities based on refused knowledge' or, in short, 'refused knowledge communities' (RKCs), precisely to emphasise our commitment to not normatively labelling people who distrust science, and to not passing judgement on their ethical values and beliefs. Hence, in this book we make the case that it is not RKCs' apparent 'exoticism', danger, even weirdness which makes them worthy of study. Rather, what makes RKCs a relevant research object for social scientists revolves around the conditions under which RKCs outline diferent kinds of social realities, and how they make sense of them without reverting to techno-scientifc expertise. By framing RKCs as social worlds, we avoid assigning a historical and predetermined hegemonic position to institutional scientifc paradigms, and thus we also avoid defning emerging knowledge-making practices in terms of their diference or distance from prevailing scientifc paradigms. Tis allows us to reverse the dominant perspective that frames competing forms of knowledge and contestations of science in terms of aberrant and deviant phenomena, thus considering the discourses, practices and resources—both material and relational by which RK can become trustworthy and reliable in the eyes of concerned groups of people in depth.

Overall, the volume is based on an extensive three-year mixed-method empirical research into four Italian RKCs especially concerned with health-related issues, namely:


Tese four RKCs share the following characteristics: (1) the rejection of all or part of the stabilised explanations ofered by science of many health- and illness-related phenomena; (2) the production of formalised (or formalisable) knowledge capable of ofering answers to certain health, care and general well-being problems; and (3) a major focus on health issues, with a strong commitment to boosting individual agency and responsibility in managing well-being. Our overall research design was

<sup>1</sup> In Italy this community self-identifes in English as 'free vax'. While in other research (see Bory, Giardullo et al. 2022) the label 'free vax' was used, to avoid obfuscating the emic jargon, in this volume we have preferred the label 'pro-vaccine choice' since the term 'free vax' is not commonly used in English and is potentially misleading.

elaborated before the whole feld of inquiry was disrupted by the COVID-19 pandemic and was then reconfgured in the pandemic context, which can be considered emblematic in underlining the reciprocal contentious relationship between RKCs, on one hand, and the prevailing scientifc institutions and their representatives, on the other.

Empirical data was gathered through an articulated research design encompassing: an extensive digital ethnography within several online settings (such as Facebook, YouTube, webinars and instant messaging platforms; participant observation of key public events); 70 qualitative interviews with RKC members; and a quantitative analysis of a large dataset of all articles related to the four RKCs published by eight major Italian newspapers. Relying on this large empirical data set, the book investigates and critically examines these four RKCs, their narratives and public discourses currently circulating in Italy, as well as the forms taken by challenges to the prevailing scientifc epistemology.

Te book consists of nine chapters, with a concluding remark section opening up the debate about the relevance of exploring refused knowledge to a reconsideration of our understanding of the relationship between science, technology and society.

Te second chapter, by Federico Neresini sets the conceptual and analytical frame for the subsequent chapters. Recalling a number of epistemological debates deeply rooted within the STS tradition—such as those concerning the relationship between the researcher and who/what is analysed (positionality), the process through which every element in a network is continuously constituted (relationality), and the fact that when something is defned, its counterpart is also constituted (reciprocity)—it supplies a general framework within which the symmetry principle guided our research. Tus, it discusses the substantive reasons behind the RKC notion in full. Te chapter then elucidates the theoretical approach we deem best suited to studying the RKCs, i.e. an integration between the SWF and certain concepts developed by ANT, including discussing how and whether their cross-fertilisation is possible and useful in exploring the current challenges to science. Te third chapter by Paolo Volonté highlights how endorsing and embracing a body of refused knowledge is much more than a merely cognitive act. Indeed, refused knowledge enacts the shaping of communities of people engaged in a contentious relationship with science, thus involving interpersonal bonds, networks and social relations that exceed mere instrumental objectives and shape a feeling of belonging. Embracing refused knowledge and taking part in a refused knowledge SW can be a signifcant event in individuals' personal life trajectories and one which is not ascribed but acquired through a biographical transition. In biographical trajectories, there is often a period of transition from believing in socially recognised and institutionalised systems of knowledge to believing in an alternative one, refused by the dominant (scientifc) community and accepted by a minority. Belonging to a refused knowledge community is a milestone in a personal biography that often involves costs or, in any event, important changes in work and social relations, political choices, health choices and body care practices, etc. It is, therefore, not simply a cognitive, but also an emotional, material, behavioural and social transition enacting collective identities. Tis last point is further developed in Chap. 4 by Paolo Bory, who investigates how the RKCs reiterate and share a common background shaped around founding narratives, anecdotes and 'founding fathers', which constitute the building blocks of their collective identity. In particular, the chapter provides an understanding of how narratives and tropes together contribute to the shaping of a common set of cultural, epistemological and 'stylistic' elements characterising the relationship between RKCs, science and society.

Chapter 5, by Simone Tosoni, adopts an ecological perspective on the digital sphere to address the media-related practices through which RKCs' narratives and belief systems are produced, stabilised and occasionally transformed, sometimes radically. Focusing on the Stop-5G RKC, the chapter aims to shed light on the close relationship between these discursive practices, the knowledge they produce and the organisational forms taken by social worlds claiming that non-ionising electromagnetic radiations have dangerous non-thermal efects. In particular, it shows that, during the pandemic crisis, the Stop-5G RKC transformed its discursive practices (and, consequently, its shared knowledge and narratives) from a 'scientifc patchwork' storytelling approach—based on a rigid defnition of borders and the selection of scientifc sources—to a 'syncretic patchwork' one based on a combination of diferent and sometimes conficting discursive sources (e.g. scientifc knowledge, folklore, new age spirituality and conspiracy theories).

Te issue of how specifc social confgurations can sustain the process of conferring credibility on RK is addressed by Ilenia Picardi, Luca Serafni and Marco Serino in Chap. 6. By combining the theoretical and methodological framework of Social Network Analysis and the SWF, it investigates the processes of association at work within the discursive universes of RKCs, aiming to uncover the discursive confguration structures which build, maintain and legitimise diferent forms of refused knowledge. Hence, Picardi et al. make the case that addressing the issue of how people actually give credibility to health-related refused knowledge inevitably challenges researchers to consider fundamental issues about the way they recombine epistemic stances and beliefs about the social and political organisation of science, and of biomedicine-related felds.

Following this line of inquiry, in Chap. 7, Stefano Crabu sheds light on the RKCs' contentious relationship with the political conditions under which biomedical knowledge is shaped and mobilised by health professionals. In so doing, it elucidates how this contentious dynamic is entangled with the ways in which RKCs confer credibility and reliability on refused knowledge. Hence, the chapter shows that RKCs are not merely concerned with challenging the content of scientifc and biomedical knowledge but also with questioning its epistemic, professional and economic roots: that is RKCs argue that claims and knowledge elaborated and enacted in the context of biomedicine, and the life sciences in general, are entangled with particular social, political and material interests, and therefore not to be believed, or at least to be treated with scepticism. Hence, conferring credibility on refused knowledge involves not only assumptions about trust and truth, but also a critical scrutiny of how the State and related governmental bodies, medical agencies, life scientists and health professionals control, manage and reshape the very vital capacities of human beings as living bodies. Tis critical scrutiny implies the mobilisation of certain arguments that can be specifc to a single RKC, or cut across multiple social worlds, thus generating a shared discursive arena.

Te process involved in enacting broad discursive substantive arenas (see Clarke & Star, 2008) is explored in Chap. 8 by Barbara Morsello, Federico Neresini and Maria Carmela Agodi. In so doing, it highlights the role played by both human and non-human agents (such as the technologies mobilised to counteract the spread of Sars Cov-2 and the actors considered experts by RKC followers) in enacting counter narratives about the COVID-19 pandemic, so as to make sense of the global emergency according to a body of refused knowledge. Hence, the chapter illustrates how these counter narratives progressively empower RKCs to collaboratively act within a broad discursive arena, fostering public dissent against public health policies. Indeed, RKCs permeate public discourses about emerging societal issues in depth, also attracting the attention and concerns of both policymakers and media operators.

In Chap. 9 Paolo Giardullo—shifting the analytical focus to how refused knowledge circulates in the wider public sphere—explores how Italian newspapers cover and frame issues and concerns raised by RKCs. In so doing, Giardullo focuses on the issues advocated by the four concerned RKCs in two interconnected ways: a quantitative presentation of coverage through a longitudinal analysis of the whole body of articles published by eight Italian major newspapers from 2010 to 2022, and a qualitative account produced by means of content analysis addressing the issue of the institutionalisation of scientifc knowledge through the delegitimation of RKC claims. Tis analysis highlights the ways in which media narratives about refused knowledge can play an ambivalent role both in sustaining the public legitimacy of science and in opening new spaces for public dissent regarding techno-scientifc expertise.

Finally, in Chap. 10 Barbara Morsello ofers a refexive account of the overall feldwork conducted by the research team into the four RKCs. A refexive account is particularly important here as refused knowledge followers share a widely held belief that academics in general act as spokespersons for epistemic regimes that they see as responsible for ostracising their knowledge within the public sphere. An additional element making a refexive account even more urgent is that RKC followers may hold beliefs, values, assumptions and political views in sharp contrast to those of the researchers engaged in the feldwork. Against this backdrop, Morsello's refexive stance explores the challenges that researchers engaged in studying the concerned RKCs face in their attempts to negotiate and conduct interviews with refused knowledge followers.

Overall, the book suggests that framing the contestation of the epistemic authority of science in terms of generalised anti-science campaigns or a current deviant irrational 'zeitgeist' may be less helpful than treating RK as a specifc way of knowing the world and of producing specifc claims in a complex relationship with prevailing epistemic institutions. RK is shaped and mobilised through everyday experience, procedural argumentation and, sometimes, by mobilising the argumentative repertoires and explanatory rhetoric pertaining to science by means not only of 'experiential experts' but also of institutionally recognised experts who publicly present and legitimise pieces of RK, or question consolidated scientifc matter of fact as an object of public concern. Tus, far from assuming a simple dichotomy between 'rational science' and 'irrational anti-science', what the book makes apparent is the specifc mobilisation and selective use of symbols, grammars and experiential observations, as well as certain scientifc authority procedures to co-produce a social order on the basis of RK rooted outside the epistemic borders of science.

**Acknowledgements** Research for this book was made possible by a grant from the Italian Ministry of University and Research (PRIN 2017B434E8\_003— Progetti di Rilevante Interesse Nazionale) for the project 'Social factors and processes afecting the acceptance of fake scientifc knowledge'. Te project was led by the University of Padova (Padua), in collaboration with the Politecnico di Milano (Milan), Università di Napoli Federico II (Naples) and Università Cattolica del Sacro Cuore (Milan).

We are very grateful to the anonymous reviewers for their invaluable comments on the book proposal and support for the development of this editorial project and to Isabelle Johnson for her precious help in revising the English version of this text.

## **References**

Armstrong, P. W., & Naylor, C. D. (2019). Counteracting health misinformation: A role for medical journals? *JAMA, 321*, 1863–1864.

Ball, J. (2017). *Post-truth: How bullshit conquered the world*. Biteback Publishing.

Barad, K. (2007). *Meeting the universe halfway: Quantum physics and the entanglement of matter and meaning*. Duke University Press.


Wallis, R. (1979). Introduction. *Te Sociological Review, 27*(1\_suppl), 5–8.


**Open Access** Tis chapter is licensed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/ by/4.0/), which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence and indicate if changes were made.

Te images or other third party material in this chapter are included in the chapter's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the chapter's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder.

# **2**

# **Can We Look at Refused Knowledge Differently?**

**Federico Neresini**

## **2.1 Introduction**

Recalling that the distinction between science and society constitutes a kind of original matrix from which a long series of other distinctions which have oriented and fed theoretical refections and empirical research on knowledge in the context of modern Western culture—were later derived may somehow appear scholastic, and thus obsolete, but it is nevertheless important. Some well-known examples include dichotomies such as science/non-science, science/lay or popular knowledge, science/ anti-science and science/scientifc illiteracy.

Understanding why the science/society distinction is so deeply embedded in our culture, and so prolifc, goes beyond the scope of this study. Fortunately, a number of STS scholars have made a great many contributions in this regard, amongst which *We Have Never Been Modern* (Latour,

F. Neresini (\*)

Department of Philosophy, Sociology, Education and Applied Psychology, University of Padova, Padova, Italy e-mail: federico.neresini@unipd.it

<sup>©</sup> Te Author(s) 2024

F. Neresini et al. (eds.), *Manufacturing Refused Knowledge in the Age of Epistemic Pluralism*, https://doi.org/10.1007/978-981-99-7188-6\_2

1991) occupies a leading position. In this introductory chapter, I will therefore limit myself to acknowledging the existence of such a distinction and the strength of its roots, a strength which continues to this day, although signs of its weakening are increasing and continuously emerging from the recent post-truth debate, for example (Fuller, 2018; Lynch, 2017; Sismondo, 2017).

What needs considering here is the main consequence of the science/ society distinction on the analysis of what we have defned in the introduction as *refused knowledge* and the social worlds of which it constitutes the main reference, i.e. those we call *refused knowledge communities* (RKCs). Tis distinction has progressively generated a negative qualifcation of most types of knowledge falling outside science—including refused knowledge itself—albeit labelling these in various ways, such as weakness, approximation, irrelevance, falsehood, distortion, contamination and even danger. Separating science from society has therefore generated a twofold tendency to homogenise the diferences between the various types of non-scientifc knowledge by treating them as residual to scientifc knowledge and evaluating them negatively.

Non-scientifc knowledge constitutes actually a variegated universe, not only because it encompasses visions of the world that are often very distant and, in any case, never fully overlap, as they are rooted in a highly varied spectrum of practices, but also because its attitude to science is a very varied one.

Take, for example, common knowledge, sometimes also referred to as lay, popular or vernacular knowledge (Eglash et al., 2004). Wynne (1996) initially defnes this in opposition to expert knowledge, but he later clarifes that its counterpart is not science but rather the 'social assumptions and models framing its objectivist language' (p. 59). Lay knowledge, therefore, is not just all knowledge lying outside science but rather local, contextual and informal knowledge that is more fexible than science, by which I mean that it can capture aspects and changes which the more universal and hence more abstract scientifc understanding usually cannot. In enabling individuals to exert 'adaptive control' (Wynne, 1996, p. 70), lay knowledge is extremely useful and relevant to the everyday life context. It has also been observed that, within such a context, the importance of personal experience is growing as a criterion with which to assess the relevance and reliability of knowledge claims; thus, 'the truth is *in* there' rather than *out* there, as it must be proven 'in the self, in personal experiences and feelings, in subjective judgement, [and] in individual memory' (van Zoonen, 2012, p. 57).

All the same, lay knowledge is not overtly opposed to science on the ground; but this is not the case of science-related populism, another type of knowledge that lies outside science.

In fact, science-related populism has been defned as an antagonist perspective based on the supposition that there are virtuous ordinary people who oppose the illegitimate claims made by a non-virtuous academic elite (Mede & Schäfer, 2020). In this view science-related populism is thus a morally driven set of claims—generally not very widespread, unlike political populism (Mede et al., 2022)—in contrast with the local and informal lay knowledge to which common people turn for answers to practical problems. Recognising the diferences between consolidated popular knowledge traditions and 'the claims of an actress that vaccines cause autism' would therefore seem possible (Oreskes, 2019, pp. 62). While the latter pertains to a repertoire of claims accompanying a preconceived stance of moral superiority that rejects science as part of the establishment, the former represents a possible alternative to science with which a collaborative relationship is sometimes possible. Tis is why traditional knowledge is not always rejected a priori by science and some of its parts can be seen as open to reconfguration within scientifc knowledge, albeit with some reluctance.

Tis is what happens, for example, with complementary and alternative medicine (CAM), which is regarded as a set of knowledge derived from popular traditions and/or their more recent re-elaborations, often through a syncretic process which reorganises some elements of diferent cultures into a new organic whole. In fact, science sometimes recognises that CAM has the potential to address certain pathologies and some of their symptoms which modern biomedicine cannot provide answers to (Brosnan et al., 2018). Tus, for example, for the US National Center for Complementary and Integrative Health, a non-mainstream practice used together *with* conventional medicine is considered 'complementary', whereas a non-mainstream practice—which may even be the same one used *instead* of conventional medicine is considered 'alternative'.1

However, the diference between complementary and alternative knowledge remains nebulous and non-defnitive. Knowledge claims not validated scientifcally and supported by unlikely subjects, i.e. those lacking adequate socially recognised credentials, if not openly dishonest, are used in everyday life contexts to respond to sense-making needs revolving around coping with highly uncertain situations that the most legitimate knowledge—primarily science—fails to counter.

Tis was frequently observable during the pandemic.

Moreover, alternative knowledge is regarded as a synonym of counterknowledge and this is indeed sometimes the case. However, counterknowledge is marshalled mainly when groups and people mobilise around specifc issues, giving rise to a *counter-public* (Hess, 2016). Tis again implies many diferent confgurations of the relationship with science, ranging from demands for partnership with scientists to fll a knowledge gap relating to issues that are important to laypersons (see the concept of *undone science*; Hess, 2016) to situations in which the latter decide to 'do it themselves', as in the case of popular epidemiology initiatives, although some scientists and/or physicians are sometimes also involved in this (Allen, 2003; Brown, 2007; Krimsky, 2000).

What lies outside science, therefore, is a multifaceted complex of varying types of knowledge with difering attitudes to science. But what all these non-scientifc types of knowledge share is a condition of inferiority to science.

From an initial distinction between scientifc knowledge and social knowledge, an only apparently obvious semantic shift has therefore reduced all forms of scientifcally unaccredited knowledge to a single category—that of non-science. At the same time, the defnition of this category as residual to science has ended up devaluing it.

<sup>1</sup> https://www.nccih.nih.gov/health/complementary-alternative-or-integrative-health-whatsin-a-name

Consequently, on one hand, both common and academic discourses tend to treat non-scientifc knowledge as subjective and thus often false, if not downright fraudulent, on the other, knowledge labelled scientifc is thus objective and true, precisely because it has nothing to do with the heterogeneous context of its production and use. It is true because it is a-historical and a-social. Similarly, a lack of scientifc literacy is a defcit to be dealt with through appropriate education and communication initiatives or, at best, through dialogue and involvement (Bucchi & Neresini, 2008; Callon, 1999; Wynne, 1995).

Non-science is therefore depicted as a desert in which all diferences are levelled out—a single great void to be flled, an empty counterpart to the fullness of science.

Tis negative connotation sometimes emerges from the labels used for some types of non-scientifc knowledge, such as junk science, pseudoscience, fringe science and science at the margins. In all these cases, the boundary work carried out to deal with the demarcation problem (Gieryn, 1983) clearly relies on rejecting and devaluing such types of knowledge.

Even more interesting is that this negative portrayal of non-scientifc knowledge tends to emerge even when its relevance and thus its value are acknowledged. All the adjectives with which we seek to non-negatively defne the various types of non-scientifc knowledge run the risk of connoting them negatively. Tat is, diferentiating themselves from science inevitably takes them to the opposite side and in a condition of inferiority from which they must be protected. Indeed, current perspectives adopting terms such as *complementary*, *alternative*, *traditional* and *heterodox* to contrast with *conventional*, *orthodox* and *ofcial* confer intrinsic epistemic dominance to science. Given the persistence of the underlying science/society dichotomy, these binaries tend to generate inaccuracies, blind spots and simplistic representations of both science and other forms of knowing, as we have seen in the case of CAM.

Is an approach to the diferent kinds of non-scientifc knowledge which avoids falling into the semantic traps set by the science/society distinction possible?

### **2.2 Labelling, Positioning, Knowing: The Symmetry Principle in Exploring Refused Knowledge**

One approach to the above quandary is starting with the labelling issue. Deciding how to name what we are interested in is no trivial matter. In fact, the label we use says a great deal about our perspective on the matter in hand—about its collocation within a classifcation system that defnes its relationship with us and with other entities, as well as about what is important and unimportant to us. Naming is part of a classifcation process, i.e. the way we accord categories to ourselves, and others, which determine the identity, relevance and behaviour of everyone and everything (Bowker & Star, 1999). Terefore, naming is not a neutral act of description but a bidirectional process of construction. Te names we give to what we are talking about have efects on both the *object* under observation and the subject observing it. Te 'looping efect' (Hacking, 1999) operates contextually on the observed and the observer; they are mutually co-constructed, as STS has repeatedly noted.

Tere is certainly nothing new about knowledge as a question of positioning. Te so-called *linguistic turn* in twentieth-century philosophy underlines that reality, or, even better, what we refer to as such depends on our language and, therefore, our point of view. At the same time, the sociology of knowledge in general and STS in particular are both constantly engaged in analysing how knowledge results from a process which is always embedded where the knower is located.

Like anthropologists, STS scholars are also very aware of the 'native's point of view' issue (Geertz, 1983), i.e. that the way we understand how scientifc knowledge is constructed depends on our perspective on it. Tis is not solely the core quandary in laboratory studies, as Latour and Woolgar discuss in depth in the introduction to *Laboratory Life* (1986), but has been addressed on many other occasions and within various contexts, such as at the crossroads between STS and post-colonial studies (Banu et al., 2017; Harding, 1998, 2008; Law & Lin, 2017; Verran, 2001).

Te *positionality* of any knowledge claim also plays a pivotal role in feminist thinking on science. Haraway (2018), for instance, pointed out that not only is 'science […] the result of located practices at all levels' but also that 'location is not the concrete to the abstract of decontextualization. Location is the always partial, always fnite, always fraught play of foreground and background, text and context, that constitutes critical inquiry. Above all, location is not self-evident or transparent' (pp. 36–37). Tus, being aware that all knowledge is situated and depends on a specifc point of view implies that the 'god trick' does not work and that choosing a partial perspective is the necessary premise to achieving 'an objective vision' (Haraway, 1988, p. 583).

Te concepts of *standpoint epistemology* and *strong objectivity* are also relevant here. Tese were developed by Harding to show that not only does a diversity of perspectives enrich scientifc enquiry, but it also reinforces it, thus transforming the unavoidable infuence exerted on scientifc knowledge by individual values, experiences and social positions into an epistemological resource (Harding, 1986). At the same time, in her concept of 'transformative interrogation' Longino (1990) showed how inescapable individual prejudices potentially spawn a collective objectivity, and Fox Keller's criticisms of the 'dream of a science completely objective' based on the reductive equivalence between 'scientifc and objective, on one hand, and masculine on the other' suggests that both are a disputable assumption designed to maintain the illusion of a neutral point of view on reality in the search for objectivity (Fox-Keller 1985, p. 88).

Moreover, in many ways, feminist analysis of science invites us to focus our attention on another signifcant aspect in our eforts to defne an adequate point of view on RKCs, one that can be encompassed within the term *relationality*, as feminist scholars have repeatedly emphasised the relational character of all the entities—human and non-human involved in the networks from which knowledge emerges. Consider, for example, the idea put forward by Barad that what we refer to as 'interaction' should be replaced by 'intra-action' to stress 'the mutual constitution of entangled agencies' (2007, p. 33). Tus, instead of assuming that separate singular actors precede interaction, intra-action enables these actors and their agency to be confgured as emerging efects of the relationship between them: 'agencies are only distinct in relation to their mutual entanglement; they don't exist as individual elements' (Barad, 2007, p. 33). Tis is the case for 'all the entities in technoscience' which 'are constituted in the action of knowledge production, not before the action starts' (Haraway, 2018, p. 30).2 However, whilst relationality is deeply rooted in many STS approaches, it undoubtedly constitutes the hallmark of actor–network theory (ANT). Tis is clearly recognisable in the work of its founders and is summarised in statements such as 'reality is a process' (Callon, 1986, p. 207) and 'Technology is society made durable' (Latour, 1991).

Relationality also allows us to highlight the complementarity or, better, the *reciprocity* of the output of classifcation mechanisms.

Just as a border defnes the presence of two separate but neighbouring territories, two territories necessarily imply the presence of a border, and any boundary work involves constructing and maintaining the two areas, with each distinction thus defning an identity and its alter ego. Tis is the 'topological' character of the assemblages we are interested in, where both the disposition of entities and their identities depend on their relationship (Law, 1999). Tus, science and non-science are always reciprocally established, i.e. the former cannot exist without the latter and vice versa. Likewise, lay knowledge cannot exist without expertise, but the latter acquires meaning and social identity only as a counterpart to the former.

But reciprocity does not automatically mean distributing epistemological resources equally (i.e. everything—whether material, symbolic or relational—that plays a part in the knowledge claim legitimisation process) and hence the epistemic authority from which the power to defne the situation or to be seriously considered is derived. In other words, reciprocity does not correspond automatically to symmetry, because the latter requires recognising the same epistemological relevance, if not the same dignity, to both sides (see also Chap. 10 by Morsello in this book).

As is well known, the symmetry principle proposed by the Edinburgh School (Bloor, 1976/1991) is designed to provide an alternative epistemological perspective to the sociology of scientifc knowledge, with a view to overcoming the so-called *sociological immunity* of science. Tis

<sup>2</sup>Te relationship that generates reciprocally the researcher and to the *object* of his/her attention has been discussed and analysed by many STS scholars. See, for example, the 'enacting' and 'never alone' concepts developed by Mol in the case of medicine (2002) and the discussion of epistemology in a post-colonial perspective, as done among others by Kenney (2015).

means abandoning the epistemic privileges associated with science when science is considered true, rational and working successfully, or all the features that simply guarantee that there is nothing to understand about science, that is, that scientifc knowledge is true and there is thus nothing to explain. On the contrary, in exploring science in the making, STS scholars point out that what is at stake in the scientifc enterprise is less discovering facts that pre-exist in nature than translating local evidence into generally accepted scientifc facts. In other words, the STS perspective is about explaining why, how and through which social arrangements the fndings generated by a specifc research group in a peculiar context (e.g. a laboratory) at a particular time can become universally accepted facts.

Within this perspective, the social sciences can add their interpretative value only if our approach to science and non-science is free of prejudice, ensuring that both are treated impartially, i.e. given the same relevance and dignity as objects of enquiry for social scientists. In its broad meaning within the STS feld, symmetry can thus be seen as an attempt to re-establish epistemological equality, even when a distinction does not confgure an equitable distribution of epistemological resources between concerned actors.

Furthermore, thanks to the principle of symmetry, not only do we give equal epistemological dignity to scientifc knowledge and to that refused as non-scientifc, but the reciprocity and potential inequalities regarding who knows and what is known in the cognitive relationship are also considered. Tus, the *principle of generalised symmetry* can be seen not only as an attempt to give both humans and non-humans the same relevance within the processes by which actor–networks are assembled (Callon, 1984) but also as an opportunity to rearrange the epistemological distribution of power between researchers and actors in the feld, i.e. between observer and observed (Waytt, 2008). Applying the principle of symmetry therefore constitutes a useful premise on which to avoid assuming a privileged position within the knowing relationship, including when this privilege is based on prejudices of a normative nature, in line with the arguments of feminist and post-colonial critics too.

As in ANT, the symmetry principle also works like a 'machine for waging war on essential diferences' (Law, 1999, p. 7) produced by applying distinctions such as human/non-human, science/non-science, truth/false and so on and also observer/observed or knowing subject/known object. In other words, seeking to be symmetrical accords no privileged point of view to the researcher—knowledge remains the fruit of a process that depends on the positions of the actors taking part in it and thus on the classifcation systems, with their labels, that are adopted from time to time. Tis is why 'nothing comes without its world [but] location is also partial in the sense of being for some worlds and not [for] others' (Haraway, 2018, p. 37).

However, the post-truth debate that has recently developed within STS has revealed the existence of at least three diferent ways of using the concept of symmetry (Pellizzoni, 2019), its central role in the STS feld from the outset notwithstanding. Te frst of these essentially accepts criticisms from scholars outside STS and invites them to accept that, albeit involuntarily, the application of the symmetry concept has favoured the afrmation of post-truth at an ontological level and its appropriation by those self-identifying as right wing who use it to delegitimise any scientifc knowledge which goes against their interests (Collins et al., 2017, 2020). Te second, by contrast, rejects these criticisms and sees them as based on what it views as a misleading reconstruction of the principle of symmetry for which it would be incompatible with the recognition of the validity of scientifc facts (Lynch, 2020; Sismondo, 2017).3 Finally, the third reverses the terms of the question, arguing that STS must indeed be questioned but for reasons which are diametrically opposite to those of their detractors. Tis position is most radically supported by Fuller (2018), for whom the advent of the post-truth era is a positive demonstration that even minorities are learning to question established power and thus 'a triumph of democracy over elitism' (p. 181).

Tese post-truth controversy stances each correspond to diferent approaches to the principle of symmetry. For the frst, the diferent knowledge claims must be considered equivalent on the ontological level in the sense that they have the same epistemological value. For the second, symmetry is a methodological move that suggests considering the

<sup>3</sup> In some ways, this echoes the so-called science wars when the *Sokal hoax* was interpreted as proof of the groundlessness of a relativist approach to scientifc knowledge (Hilgartner, 1997).

diferent claims as if they were equivalent, without implying that they are or are not true. For the third, symmetry is rather to be understood as a political strategy with which to rebalance the various groups' unequal distribution of epistemological resources, to defne the situation and thus the very rules of political confrontation. For the latter, the principle of symmetry is therefore neither an ontological nor a methodological option but a political move ofering minorities greater potential for debate with the majority.

Taking a cue from this internal tripartition of the STS debate allows us to further clarify how the concept of symmetry can be used to improve analysis of RKCs.

Tere are at least three good arguments in favour of the second option, i.e. the methodological one.

Firstly, interpreting symmetry as a methodological orientation allows us to avoid having to decide whether 5G is really harmful to health, for example, or whether alkaline water really serves to restore our psychophysical well-being. Tis is not our job, and it goes without saying that by so doing we can remain faithful to the original STS mandate—understanding how what we treat as scientifc knowledge is built, consolidated and possibly decays—rather than trying to establish whether or not it is an objective representation of reality.

Secondly, treating diferent epistemologies as if they were equivalent rather than actually equivalent puts us in the best position to understand the construction processes used in both scientifc and non-scientifc knowledge, as this takes for granted neither the goodness nor the soundness of either.4 As a consequence, 'embracing epistemic democratisation does not mean a wholesale cheapening of technoscientifc knowledge in the process' but, rather, it is a matter of showing that the statement 'It could be otherwise means very rarely that it could easily be otherwise' (Sismondo, 2017, p. 3). Tat is, claims require a wide array of resources material, discursive or relational—if they are to be accepted and ready to use.

Tirdly, the methodological option averts the risk—to which, by contrast, the political option exposes us—of not clarifying whether this

<sup>4</sup> See also Chap. 3 by Volontè in this book.

symmetry concerns the epistemological or the ontological level and, therefore, of fnding ourselves enmeshed in the post-truth controversy without drawing great benefts from it in analytical terms. Te most appropriate approach to the issue of relativism to our point of view here and for our purposes is, in fact, Law's, because it constitutes the most general framework of reference and of longest tradition encompassing the more specifc and recent post-truth debate. Indeed, Law underlined that 'To accept the reality of epistemological relativism and deny that there are universal standards is not to say that there are no standards at all: and neither is it to embrace moral or political relativism. As Richard Rorty so well demonstrates, the either/or postulated by those committed to absolutism (either absolute standards, or no standards, epistemological or moral) is a false dichotomy. Locally we may seek to distinguish truth from power, persuasion from force, and what is right from what is wrong' (Law, 1991, p. 5).

In a nutshell, 'Symmetry does not preclude noticing diferences between the contending parties, their backgrounds, commitments, and arguments, but it does discourage using familiar, and all-too-easy, arguments to dismiss one or another position as irrational, ignorant, or dishonestly motivated' and, at the same time, 'Tis is not so much a policy of interpretive charity as it is a strategy for gaining insight into the practical actions, discourse, and institutional supports that give rise to and sustain the resilience of such public controversies' (Lynch, 2020, p. 58).

Tis idea also corresponds with Latour's call for a shift from 'matter of fact' to 'matter of concern' (Latour, 2004). Tis means not assuming that objective scientifc truth is valid per se but rather taking actors' points of view seriously and recognising that what is most relevant for social scientists is the network of relationships between interested actors and that it is within such networks that what is objective and what is not is defned, including what is to be taken on board and what is to be excluded.

On the basis of the above, the *refused knowledge community* label constitutes a chance to talk about social worlds bringing together people who feel they share knowledge refused by science and by the majority of other people. Tis helps us to take a stance with which it is easier to escape the constraints and biases usually posed by the science/society distinction. At the same time, it frames our analysis in terms of relationality and reciprocity and fosters respect for the symmetry principle. However, we should not confuse the methodological assumption of equidistance with an impossible epistemological neutrality, i.e. the existence of a privileged observation point devoid of conditioning.

RKCs are made up of people who feel on the 'wrong' side of knowledge because they are seeking to attribute legitimacy to claims that are considered false, unfounded or deviant by the gatekeepers of institutional knowledge. Tis claim cannot be simply defned as alternative or even complementary, the fact that these two adjectives highlight features that also pertain to refused knowledge notwithstanding. Tose who do not identify with the scientifc frame often try to propose an alternative system of knowledge and, at the same time, previously refused knowledge is sometimes integrated into the scientifc corpus through processes of boundary reconfguration. Tis is true of acupuncture, for example, and some of the therapeutic principles deriving from herbal medicine or some traditional forms of body manipulation later acquired by physiotherapy.

Moreover, the words 'alternative' and 'complementary' tend to echo the dominant scientifc position, attributing less value and less solidity to other forms of knowledge, on one hand, and assuming science's power to defne situations, on the other, both of which supporters of non-scientifc knowledge lack. Talking about refused knowledge, by contrast, allows us to stress that—as with conspiracism—it 'can hardly be understood by its inherent or substantial characteristics, but only by the fact that it has been labeled as such' (Harambam, 2020, p. 25).

It is more than a matter of fnding an appropriate name, however. We also need to fnd a theoretical framework that allows us to analyse RKCs coherently with the name we have chosen for them.

#### **2.3 Point of View as a Matter of Theoretical Framework**

We have already mentioned Haraway's (2018) argument that 'Nothing comes without its world'. We now also need to consider the second part of her sentence: 'so trying to know those worlds is crucial' (p. 37).

So what is the theoretical framework most appropriate to the analysis of RKCs?

Tere are at least two promising candidates: the social world framework (SWF) and ANT. Tere are many reasons for this choice, but the most important relate to their epistemological congruence with what we have discussed as regards positioning, relationality, reciprocity and symmetry. Both SWF and ANT are fully consistent with symmetry and relationality. On one hand, they argue for the importance of considering all the actors involved in the processes of building, shaping and stabilising knowledge claims with no preconceptions regarding their truthfulness, rationality or objectivity. On the other hand, they share the idea that knowledge is not a static description of reality but the emerging result of ongoing processes to which many heterogeneous actors contribute and on which they also depend. Tese actors include researchers, whose positioning is part of the constitutive relationship that defnes them and the *objects* they study.

Of course, SWF and ANT ofer a range of concepts which cannot always and wholly be coupled as equivalent. However, I believe that we can beneft from what they jointly ofer to understand the RKCs by means of a number of considerations.

Te concept of *social worlds* itself provides solid premises for the recognition of the relational character of knowledge because they are defned as 'universes of discourse', i.e. 'shared discursive spaces that are profoundly relational' (Clarke & Star, 2008, p. 113). Te focus, therefore, is on meaning-making processes in which many actors—individuals and more or less organised groups—perform collective action while also working with shared objects. Within the SWF perspective, what counts as meaningful clearly depends on its embedding in a specifc social world, and this tends to be 'particularly attentive to situatedness and contingency, history and fuidity, and commitment and change' (Clarke & Star, 2008, p. 113). As a consequence, SWF is intrinsically relational and symmetrical and avoids attributing epistemological pre-eminence to any specifc point of view.

At the same time, SWF endorses an *ecological gaze* (Star, 1995) not only because each social world relies on the relationships between many diferent elements but also because each social phenomenon requires contributions from and interactions between many social worlds.5 Tis ecological organisation of social worlds around an issue of mutual concern and commitment to action is regarded as an *arena*. In our case, this means that RKCs cannot be properly analysed without considering the ecology of the relationships in and through which they are established and shaped. In other words, RKCs are what they are and act as they act because they participate in a network of interactions that mutually defne who and what is involved. After all, the very defnition of RKCs implies reciprocity between those who feel they belong to a social world that shares knowledge refused by others and those who consider such knowledge to be groundless, dubious, distorted and misleading.

Looking at RKCs as integral parts of one or more arenas contributes to highlighting that their compositions, confgurations and actions constantly and inevitably depend on their interactions with other social worlds. Tis awareness allows for due consideration of the role of mass media, for example, and, to an even greater extent, social media, the former mainly as a stage on which RKCs confgure their relationships to other actors (see also Chap. 8 by Morsello et al. and Chap. 9 by Giardullo) and the latter as an opportunity to feed shared discourses and meanings including between subjects who may never physically meet (and this was particularly true during the pandemic). It is therefore clear that social media constitute, on one hand, a space of vital importance for RKCs, and, on the other, a context that conditions their actions and attitudes. At the same time, however, avoiding attributing to social media the capacity to determine the characteristics and lives of RKCs is thus easier. In short, RKCs are not victims of social media, although without them and therefore without coming to terms with the rules by which they function—they would probably not exist.

Considering RKCs as parts of social arenas also provides us with an opportunity to pay due attention to the heterogeneity that characterises the networks constituting them. Within this heterogeneity, SWF recognises the role of non-humans, in the confgurations of both social worlds and arenas, although such a recognition is not entirely convincing, as in ANT. In fact, although it has been stressed on several occasions that social

<sup>5</sup> See also Chap. 4 by Bory in this book.

worlds and arenas are made up of human and non-human actors which mobilise discourse and share meanings (Casper, 1994; Clarke, 2005; Star, 1988, 2010; Star & Griesemer, 1989), non-humans still tend to be framed as 'product[s] of the symbolic interaction[s]' (Blumer, 1969, p. 10) of humans. Tus, whilst it is true that the SWF was 'among the earliest in STS' to focus on non-humans (Clarke & Star, 2008, p. 130), it did so as a theoretical perspective centred on *meaning-making* and is inclined to consider these as passive instruments dependent on human interactions.

In the case of RKCs, however, the role played by non-human actors is anything but secondary and difcult to regard as passive. In three out of the four case studies examined in our research, this is extremely clear. Firstly, it is precisely non-humans which constitute the fulcrum of RKCs' discursive universes and mobilise their actions. Secondly, the central importance of non-humans is tangible even in RKCs' names. Look, for example, at the RKC based on opposition to the 5G network, i.e. a sociotechnical infrastructure which comprises antennas, electromagnetic waves, data transmission standards, control and regulation systems and smartphones, to cite the most easily identifable. Attributing a secondary role to this set of non-humans is difcult because they are the basis of the 5G network, enacting everyday discourses and, at the same time, they are identifable as a dangerous enemy to mobilise against.

Viruses, vaccines, masks, respirators, health systems, lockdowns and other policy measures played a similarly strategic role in the confguration and evolution of the pro vaccine-choice RKC (see Chap. 8 by Morsello et al.). Not only did non-human actors such as these encourage the adoption of behaviours aimed at countering the spread of the virus or reducing its efects on people's health, but they also contributed to labelling those who cast doubt on them—vaccine-hesitant and convinced antivaccine individuals—as irresponsible, ignorant, irrational and even dangerous.

In the case of the alkaline water RKC, the same can be said of mixers, sales networks, promotional events and a great deal more, without forgetting alkaline water itself, of course.

It is, perhaps, a little harder to identify the relevance of non-humans in the 5 Biological Laws RKC, but still not overly challenging. In fact, recognising the role played by disease and trauma, i.e. any event that—in the view of 5BL RKC—disrupts individuals' lives and determines imbalances from which a state of malaise will later originate will sufce, namely artefacts such as the table graphically representing the 5 Biological Laws via which traumas are linked up with certain pathologies or by reconfguring viruses as *friends of man*, i.e. as actors to come to terms with rather than as enemies to defend oneself against (see Chap. 7 by Crabu).

Te importance of non-humans for RKCs is thus very clear, and this makes it impossible to leave these in the background. Consequently, while SWF constitutes a theoretical basis for an epistemologically aware analysis of the processual character of knowledge (relationality) and its dependence on a specifc point of view (positionality), and is thereby methodologically marked out by the principle of symmetry, what we need is to seek out an integration that allows us to better identify the agency of non-humans. In this respect, the great attention paid to nonhumans by ANT (Callon, 1984; Callon & Latour, 1992; Latour, 2005; Law & Hassard, 1999) would suggest looking in this direction but this requires great caution. Simply borrowing a concept from one theory—in this case, that of non-human agency—and inserting it into another would not be correct, unless a sufciently broad common ground between the two that would justify some form of integration can be found.

Fortunately, SWF and ANT seem to ofer this possibility. As Clarke and Star (2008) have observed, we can, in fact, consider 'these two approaches as kindred in many ways (especially compared with earlier approaches to the study of science) and yet also as ofering quite diferent afordances and accomplishing diferent analytical ends' (p. 122). Teir not always overlapping premises notwithstanding, SWF and ANT adopt perspectives in which relationality, reciprocity, symmetry and positionality are of key importance, as we have seen. For ANT, in particular, not only is 'reality […] a process' (Callon, 1986, p. 207), but actors are also inseparable from the networks of relationships to which they belong. Actors and networks are both intrinsically process-related in nature and there are thus only actor-networks. As Venturini (2019) has observed, in the actor–network expression, 'Te hyphen stands for an equal: actor=network' (p. 8) and vice versa.

However, ANT struggles to recognise the relevance of meaningmaking processes which, by contrast, occupy a prominent place within RKCs. We can thus reiterate here what we have just discussed regarding non-humans but with the SWF-ANT roles reversed. Te deanthropomorphisation enacted by ANT to accord importance to nonhuman agency runs the risk of leaving the construction and attribution of meaning processes which are so important for humans in the background. Moreover, these are central aspects for RKCs, which are communities built precisely on the sharing of universes of discourse which generate a sense of belonging and solidarity, often strengthened by the presence of common enemies.

A shared search for well-being is, in fact, a strategic element for the alkaline water RKC, and a specifc interpretation of health and disease is a fundamental ingredient in the Pro Vax-Choice RKC, often in strong opposition to science and scientifc medicine. Te same is true, albeit with specifc modalities and values, for the 5 Biological Laws RKC, which reconstructs an entire universe of discourse parallel to that of scientifc medicine. Te meaning-making processes at work in the case of the Stop-5G RKC appeal to concepts, theories and interpretations of reality, in a word to a mix of knowledge claims legitimised by arguments and practices with which its members identify. Here, too, the presence of a multifaceted enemy plays a key role, and it can take the form of science, corporations and, sometimes, hidden powers that are not always readily identifable.

As has recently been underlined, however, ANT struggles 'to engage with the history of the present and [the] latter's constitutive role in understanding the experiences and actions of diferent actors' (Prasad, 2022, p. 105). Te *history of the present* means reconstructing the link between what is happening today and what happened in the past according to the logic of Foucaultian genealogy. An analysis of this kind allows for an interpretation of the diferent ways to understand the same claim by actors who have diferent genealogies and to comprehend, for example, how it is possible that during the pandemic, the hypothetically dangerous nature of masks—built on the basis of scientifcally refused arguments found support both among African/American communities and among white supremacist groups, as Prasad has shown.

Terefore, understanding RKCs without seriously considering meaning-making processes is extremely difcult, perhaps even impossible.

However, ANT cannot be said to completely ignore the meaning dimension attributed by human actors to their actions and their involvement in specifc interaction networks. In some respects, it could be argued that meaning-making can be interpreted as a particular case of a more general category of processes to which those ANT calls *translations* also belong. Tus, for example, when the interests of an actor are translated in such a way as to make them compatible with those of another, when one convinces others that by becoming an *ally* of someone else, they are only pursuing their own objectives, and when actors share a *point of obligatory passage*, processes that can also be interpreted as meaning-making are still recognisable.

Clearly ANT is not interested in using such processes as explanatory resources and what matters is the relationships between the network's actants and certainly not the motives of the humans holding together the assemblages they form part of. We are, therefore, not arguing that meaning-making processes explain social phenomena. However, this does not imply that they do not play a role within them, for example, in triggering and developing translation processes. In other words, we can avoid reducing the complexity of the assemblages we intend to study by not applying outside theoretical categories and not assigning motivations, attitudes and beliefs to actants. Nevertheless, whilst this is true from the researcher's point of view, this does not mean that the same is true of human actants, for whom meaning-making processes remain important. Indeed, there is nothing accidental about the fact that a 'matter of concern' is, by defnition, a matter for someone.

Tis may appear to be stretching ANT too far but it cannot be said to be incompatible with it, provided that including the attribution of meaning by human actors in the framework of translation processes remains one factor in the network-building process amongst many others and does not become a second-level explanation. ANT, in fact, aims to avoid surreptitiously introducing abstract conceptual constructions in the form of social factors, which would otherwise reduce the complexity of association processes rather than deploying their richness, as explaining elements (Latour, 2005).

A role for meaning-making processes can therefore be identifed in ANT without contradicting it.

Taking into account what has been discussed thus far, we have attempted to integrate SWF and ANT as theoretical perspective with which to analyse RKCs. Indeed, RKCs ft the defnition of social worlds as universes of discourse that give rise to collective actions perfectly, even if they are not necessarily based on consensus. SWF allows all these aspects to be considered within a consistent and organic theoretical framework. At the same time, there are a number of advantages to be gained from ANT in considering the highly signifcant aspects implicated in the processes through which the claims of RKCs are built and legitimised: the relevance of non-humans to the social worlds in which refused knowledge is accepted and used, the fuidity of the confgurations in which actants are involved and assembled, and as concerned networks acting both as emerging results of actants' interactions and as conditions for actants' existence. Terefore, our approach has adopted SWF as its main theoretical reference whilst supplementing it with relevant aspects from ANT, such as the constitutive relationships between actors/networks and non-human agency.

Cross-fertilising SWF with ANT allows us to consider both the social and technological conditions underlying RKCs and thus grasp the ways in which scientifc knowledge and science-based ordering processes are questioned by human–non-human assemblages. Te aim is to explore how networking activities come into being, which social worlds enter arenas, how humans and non-humans are involved, how actors are enrolled in RKCs, how parts of them can be reassembled to form new ones and how RKCs can achieve temporary stability, shaping and sharing refused knowledge.

Tis creates the analytical conditions by which to demonstrate that not only do RKCs shape and mobilise claims challenging the monopoly of science in defning reality but they also ofer new meanings and options in everyday life and this was especially true during the pandemic, a period marked by deep uncertainty and collective disorientation.6

<sup>6</sup> See, for example, Prasad (2022).

#### **2.4 Claim Legitimisation Strategies**

Considering the principles of relationality, reciprocity and symmetry, which play a core role in our approach to RKCs, it can be observed that the knowledge legitimisation strategies their members resort to are similar to those of science in many respects. Tese strategies correspond to concepts already familiar to the STS feld, although they are framed in various ways and their degree of stabilisation thus difers.

Te frst, and extremely general, strategy concerns *boundary work*.

As we have seen, every time we encounter refused knowledge and other types of non-scientifc knowledge, it means that boundary work is under way and that true, accepted, prevailing knowledge is being established. As one of its earlier defnitions set out, 'boundary-work occurs as people contend for, legitimate, or challenge the cognitive authority of science and the credibility, prestige, power, and material resources that attend such a privileged position. Pragmatic demarcations of science from nonscience are driven by a social interest in claiming, expanding, protecting, monopolizing, usurping, denying, or restricting the cognitive authority of science' (Gieryn, 1983).

Vice versa, as required by symmetry and relationality principles, RKCs also engage in defning what is to be regarded as true knowledge and what, by contrast, is bad science or junk knowledge spread by interested groups (e.g. Big Pharma and institutional science serving the establishment) and a-critically supported by most people.

An extremely important aspect of boundary work is that it can be almost invisible, although it is sometimes easier to observe. When the latter is true, a public controversy is almost certainly under way in which many diferent actors debate a sociotechnical problem and discuss how to defne and address it, thus confguring what have been called 'hybrid forums' (Callon et al., 2001). In fact RKCs can be regarded as expressions of controversies which, for the most part, take place around boundaries demarcating *true* knowledge from *other* knowledge. Such controversies tend to remain latent for long periods and then resurface, sometimes aggressively, with an example being the discussions around vaccines during the pandemic.

As STS has demonstrated, parties to techno-scientifc controversies attempt to legitimise their points of view by weakening those of their opponents, seeking either to demonstrate the groundlessness of their claims or transforming these into elements supporting their own arguments (Callon et al., 2001; Collins & Pinch, 1979; Venturini, 2010). Terefore, attempts to enrol scientists as supporters of RKC claims are not infrequent, with an example being Nobel Prize winner Luc Montagnier, who supported the therapeutic properties of alkaline water and became a hero of the Pro Vax-Choice movement. Attempts to incorporate theories or experimental results accredited by science into the framework of elements in favour of RKC claims are also common. In addition to the famous Wakefeld study on the supposed connection between vaccines and autism, which was initially published in *Nature* but then withdrawn, a further example is the highly casual use of quantum physics by supporters of the 5 Biological Laws and of widely accepted scientifc concepts, such as electromagnetic felds by the Stop-5G RKC.

Combining a range of elements to develop a convincing argument corresponds to a second strategy that can be described as *syncretism*. Tis legitimisation process comes into play when RKCs assemble activities, ways of doing things, styles of thinking, discourses and individual statements which come from diferent domains but are combined into a new confguration. Examples of syncretism can be found on both the science side—such as the inclusion of acupuncture in Western scientifc medicine—and RKC side, with an example being 'family constellations' as part of the 5 Biological Laws.7

Syncretism is not a mere juxtaposition of heterogeneous elements. It is a patchwork with a shared discursive framework, new mixes which come across as meaningful and coherent to RKC members (see Chap. 6 by Picardi et al.). Terefore RKCs, like science, act as *heterogeneous engineers* (Law, 1987) committed to maintaining their claims through constant assembling of elements that are usually treated as belonging to diferent classes—human and non-human, scientifc and non-scientifc, individual and collective—and arguments otherwise belonging to diferent domains and delivered by various communication channels (scientifc journals, blogs, social media, traditional media, laws and regulations and

<sup>7</sup>Family constellation therapy is a type of psychological counselling based on the idea that problems can flter down through generations to cause stress in the present moment.

informal exchanges in the most diverse contexts, from scientifc conferences to training meetings, assemblies to street protests).

If we then focus on the eminently discursive level, syncretism strategy can be viewed as a combination of contents, concepts and discourses from diferent narratives with a view to building a new narrative, which can also be more or less organic (see Chap. 5 by Tosoni).8 Tis is akin to what happens with a musical mash-up and many other forms of cultural hybridisation.

It is worth noting that one of the main components of the syncretism practiced by RKCs in support of their knowledge claims is *personal experience*. Tis is a validation criterion that is mentioned recurrently with regard to personal experiences of disease, for example. Full-blown personal experiences are not always required, and others having had such experience is sometimes enough, i.e. with the same disease or belonging to the same entourage as parents, friends and colleagues.

Tis epistemological resource based on personal experience is thus a crucial aspect supporting refused knowledge. Anything proving useful in dealing with a situation can be considered proof of RKCs' knowledge claims, both by making it meaningful and by suggesting the most appropriate way to deal with it. Te great value accorded to experience—fully personal or even just shared—thus assigns a prominent role to individual testimony within the refused knowledge legitimisation process. In fact personal experience as a criterion for judgement and validation seems to have acquired increasing importance in our cultural context, especially when people are faced with health problems of various degrees of severity (Brewer et al., 2017; Dubé et al., 2013; Kata, 2010; van Zoonen, 2012). Examples of this are tumours diagnosed, deciding whether to vaccinate one's children or clinically unexplained symptoms that might be interpreted as efects of exposure to electromagnetic felds. However, in these and many other highly emotionally charged cases potentially also comprising a biographical break, establishing whether the knowledge of scientifc experts is signifcantly more reliable than direct experiential

<sup>8</sup>However, we should not forget that the concept of syncretism is necessarily based on what has been called the 'bias of purity' (Law et al., 2013, p. 174) as it assumes that there are categories by which our reality can be organised unambiguously, forgetting that these categories are derived from constant *purifcation* eforts (Latour, 1993).

knowledge or the knowledge of people within one's own social world can be difcult. Terefore, intimate coexistence with what is framed as *a problem I have direct experience of* (e.g. when I vaccinated my son he had a terrible allergic reaction) makes it difcult to rely on the skills of a doctor which, whilst certainly based on scientifc evidence, are, precisely for this reason, aseptic and therefore those of someone who has not experienced this same problem *frst hand*.

Te experiential knowledge shared within RKCs is, in fact, confgured as a form of *knowing otherwise*, in which the direct and/or shared experience dimension is both a legitimisation criterion and an action resource. For these same reasons, RKCs recognise authority based on *experiential expertise*, i.e. the expertise of those who are close to people in a RKC who have had similar experiences or who have met many people in the same condition. Tis authority is further strengthened when practicable solutions without too many techno-scientifc mediations are ofered, as these are more readily understandable and thus reassuring. Indeed, within the logic of experience-based legitimisation strategies, expertise based on institutional credentials (education, academic position and publications) is considered distant, abstract and useless, even harmful. Te traditional expertise-building process is therefore turned on its head. Rather than expertise being an institutional credential enabling experience to be acquired, it is experience that certifes expertise (Heyen, 2020; Merkley, 2020; Vuolanto et al., 2020).

In some ways, the social worlds of self-help groups—from alcoholics anonymous to patient associations—move precisely in this direction. However, in the case of RKCs, knowledge based on personal experience implies a watershed with scientifc epistemology to the extent that only limited space is left to scientifc knowledge, the opposite of what happens in the case of patient associations and groups (Epstein, 1996; Rabeharisoa & Callon, 2002).

However, RKCs do not reject science totally or defnitively. Rather they combine validation criteria based on experience with syncretism by selecting and inserting scientifc knowledge—or portions of it—into the framework of their shared knowledge to generate something resembling a consistent whole. RKCs are thus making instrumental use of scientifc knowledge.

Tis reconfguration of scientifc knowledge not infrequently pertains to a further legitimisation strategy that seeks, in the sense of ANT, to translate the forms and methods of scientifc research into RKCs' discourse and practices. It is a matter not only of importing scientifc knowledge into a new context but also of enhancing the credibility of this context by emulating ofcial scientifc practices. Tis is a strategy that can be described as *mimicry*, with consolidated scientifc practices emulated in a functional way to confer credibility on refused knowledge.

Tis happens when RKCs use symbols, procedures and repertoires typical of scientifc language to produce facts and evidence to support their claims. It is a strategy that has already been documented, for example, in the creationism-evolutionism debate (Park, 2001) or in the case of conspiracy theorists, who 'faunt with academic credentials (professor, Dr, MD, etc.), publish books with scholarly sounding titles and adopt a style of writing that mimics mainstream academia [… so that they] make a parody out of science [… thus becoming] the pathological Other of modern science' (Harambam, 2020, pp. 13–14). Tis strategy also encompasses attempts to enrol scientifc experts as supporters of refused knowledge or those with the scientifc credentials which come with working, currently or in the past, in universities or research centres, perhaps in marginal positions, or even simply as graduates.

It should also be underlined that emulating scientifc practices tends to take an idealised version of science as its reference point, portraying it as free of interests, exclusively devoted to the good of humanity and designed to achieve objective knowledge (Harambam, 2020; Jaspal et al., 2012; Prasad, 2022). At the same time, mimicry can concern the borrowing of scientifc formats, such as the organisation of a training course in a typically academic style.

#### **2.5 Conclusions: Why Should We Take RKCs Seriously?**

One of the most interesting results which emerged from our research is that the strategies adopted by RKCs to support their claims are also clearly recognisable in the processes by which scientifc knowledge is constructed and legitimised. Is science not continually engaged in defning and maintaining boundaries? Tink, for example, of those which separate it from heterodox cognitive practices or those which distinguish between disciplines, schools of thought and theories or paradigms. Is not the formulation of new concepts, research programmes and tools often derived from the hybridisation of diferent research felds, from their combination into a new organic framework of elements previously belonging to separate felds? Does not the history of science very frequently seem to proceed through processes of syncretism? Furthermore, could not research work in *normal science* à la Kuhn be interpreted in many ways as an efort to remain consistent with the dominant paradigm, even through mechanisms of mimesis?

From this point of view, refused knowledge legitimisation strategies truly resemble those adopted by institutionally accepted knowledge. After all, is this not one of the main acquisitions of STS? Is it not this similarity that underlies the principle of symmetry? Certainly, identifying diferences, even remarkable ones, is by no means difcult. Such diferences seem, above all, to concern difering interpretations of the expression *knowledge based on experience*. For RKCs, what stands out is the reference to individual experience, the validation derived from subjective feelings and having *experienced something in the fesh*. Whilst such knowledge can then be strengthened by sharing it with others whose experiences are similar, the individual subject still remains the starting point in the cognitive process and the benchmark it returns to, to stabilise its outcomes.

As we know, scientifc research also relies heavily on experimental practices, i.e. methods of legitimising knowledge based on experience. However, it is an experience built and implemented by reference to collective parameters that are programmatically defned for the purposes of going beyond the individual, despite the diversity of the epistemic cultures to which reference is made (Knorr-Cetina, 1999).

However, if this specifc kind of reference to experience is science's determinant strength, it is precisely this specifcity that makes it unattractive to many, especially in the face of difcult situations such as illness, uncertainty and loneliness. Scientifc knowledge can thus appear aseptic, detached from subjective feelings and distant from people's living experiences which are vivid precisely because they feel unmediated and thus open to personal interpretation.

It is exactly this distance from the everyday life sphere—which has grown over time, partly thanks to the development in science of languages and practices which feel increasingly esoteric for lay people which gives RKCs space and sparks their interest. However, all this makes RKCs all the more signifcant to our understanding of the social processes in which we are embedded, rather than considering them as exotic objects pertaining to a tiny minority and thus to be studied with the curiosity of arrogance.

#### **References**


Law, J. and Hassard J. (1999). Actor Network Teory and After Wiley-Blackwell.


**Open Access** Tis chapter is licensed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/ by/4.0/), which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence and indicate if changes were made.

Te images or other third party material in this chapter are included in the chapter's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the chapter's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder.

# **3**

# **Embracing Refused Knowledge: The Turning Processes**

**Paolo Volonté**

#### **3.1 Introduction**

Endorsing and adhering to a body of refused knowledge is a signifcant event in an individual's life trajectory. While apparently merely a cognitive act, it is really much more than this. Refused knowledge typically engenders communities of concerned people engaged in a contentious relationship with science, which is the protagonist of rejection and, therefore, of the act qualifying a specifc body of knowledge as 'refused'. Tus, embracing refused knowledge often implies joining a social world (Clarke & Star, 2008), developing interpersonal bonds, entering networks populated by human and non-human actors and cultivating institutionalised social relationships which go beyond mere instrumental objectives and shape a feeling of belonging.

Hence, taking part in a social world characterised by refused knowledge is often the outcome of a signifcant personal turn. Rather than

P. Volonté (\*)

Department of Design, Politecnico di Milano, Milano, Italy e-mail: paolo.volonte@polimi.it

<sup>©</sup> Te Author(s) 2024 **53**

F. Neresini et al. (eds.), *Manufacturing Refused Knowledge in the Age of Epistemic Pluralism*, https://doi.org/10.1007/978-981-99-7188-6\_3

ascribed it is acquired through a biographical transition. Te biographical trajectories of people endorsing refused knowledge of any kind frequently reveal a gradual shift away from an original state of alignment with an institutional knowledge system—that is, a system of beliefs legitimised and promoted by certain epistemic institutions in society, such as science, the educational system and medical authorities—to alternative ones refused by such institutions and shared by a minority community. Tis applies to the four communities considered here: Pro-vaccine choice, Five Biological Laws (5BLs), Alkaline Water and Stop 5G. Embracing refused knowledge usually implies an important change in people's lives. Joining a refused knowledge social world is a challenging development in an individual's personal biography involving various kinds of costs—for example, in work and social relationships, political choices, health choices, body care practices, etc. Bridges with certain friends and relatives may be burnt, new political engagement with a niche party or movement may reshape life interests and time allocation regimes, and refusing science-based medical advice may lead to long periods of illness and an ongoing struggle against public welfare health systems. Such personal transitions are not merely cognitive in nature, then, but also emotional, behavioural, social and material.

Moreover, analysing the processes leading people to turn to refused knowledge is not simply of use in producing a thorough description of refused knowledge social worlds; it also increases our understanding of the dynamics of knowledge construction and stabilisation in general, including scientifc knowledge (see Chap. 2, by Federico Neresini). Adopting a symmetrical standpoint, the decision to believe in a body of knowledge—be it socially institutionalised or alternative—is epistemically neutral, meaning that the choice cannot be explained simply on the basis of the greater or lesser truthfulness or objectivity of the knowledge itself. Hence, a shift from institutionally legitimised knowledge to refused knowledge is a topical moment in which the non-epistemic mechanisms leading to the choice may also emerge. What makes people change their minds and turn to refused knowledge? What makes them form an opinion and embrace scientifc knowledge? Tese two questions address the same social knowledge stabilisation dynamics.

In this respect, whereas at frst glance epistemic neutrality can make such turns seem gratuitous and, therefore, of little interest in understanding the construction and stabilisation of knowledge, in actual fact the opposite is true, because it is precisely in turning processes that the forces contributing to stabilising bodies of knowledge exert their power. Moreover, where embracing *refused* knowledge is concerned, with its implicit turning from one knowledge system to another *competing* knowledge system, the forces governing adherence to a knowledge system become more evident. In fact, in such cases, turns involve an at least partial estrangement from prevailing beliefs, as they involve a decision not to recognise the legitimising power of science—a social institution beneftting from widespread recognition in contemporary societies. Such turns involve weighty choices that can be explained only in relation to particularly stringent (non-epistemic) mechanisms.

Tus, the subject of this chapter is not communities as such, with all their characteristics and peculiarities, but the experience of transition from one social world to another—that is, from a social world governed by scientifc institutions to a social world constantly struggling against rejection, and often, stigma, from science-based people and communities. Studying such transitions is a tool by which to enquire not only into adherence to refused knowledge but also into the socio-material dynamics generally at work in the processes of construction and stabilisation of knowledge, even when knowledge is legitimised by scientifc communities.

#### **3.2 Turning as a Process**

Tis chapter enquires into the transition to refused knowledge as it occurs in the four social worlds examined in this book. Refused knowledge social worlds are often based on ties of various degrees of closeness, routine interactions and institutionalised organisations (Clarke & Star, 2008, p. 116). Such refused knowledge communities (RKCs) defend 'visions of science and medicine that are denied acceptance or even consideration by institutional science' (Bory et al., 2023; see also Picardi & Agodi, 2021). Tey function as actor-networks of heterogeneous socio-material resources and agents engaged in eforts to negotiate and resist prevailing scientifc discourses and produce knowledge ofering new meanings and options for addressing everyday life to members. In the four cases considered here, the form of this framework varies, as the introduction of this volume highlights.

However, since this chapter is not concerned with RKC internal dynamics, but rather with the turning processes that lead individual agents to embrace refused knowledge, its perspective is a diferent one. Although the four social worlds considered are characterised by existing socio-material actor-networks, we will see here that these do not play a decisive role in turning processes. Turning implies enrolment (Latour, 2005, p. 28) in a new social world, but this is more frequently a matter of a slow progression within a life trajectory in which RKCs are minor players. Anticipating some of the results of this analysis, I will note here that turn is usually based on a pre-existing afnity; triggered by an event that is not necessarily related to a specifc actor-network, although it can become such when it is experienced and defned by the individual as a 'problem'; supported by human micro-networks of strong ties generating afliation—rather than by membership in wider communities; and reinforced precisely by subjects (agents of science) interested in preventing new members joining RKCs. In other words, the turning process highlights a key principle of Actor-Network Teory, namely that actornetworks (in this case, communities) are assemblages in unstable equilibrium, feeting stages in a constantly evolving process—not groups but stages of group formation (Latour, 2005, pp. 27–42). Embracing refused knowledge is not the same as becoming part of a stable RKC.

Moreover, we will see that the turning process is often inherently powerful for those involved, meaning that from the human actor perspective it is perceived as natural and necessary. It is a kind of moral career (Gofman, 1959) in which the afliation to a micro social group activates one's own 'afnity' to refused knowledge and enables individuals to 'become willing' to be part of the relevant social world (Matza, [1969] 2010, pp. 111–112). Tose 'converting' to refused knowledge are not passively enrolled in existing actor-networks. Indeed, they experience *conversion*, not *contagion* or *infection* (Matza, [1969] 2010, p. 102).

In the remainder of this chapter, I will return to the singular aspects of this rather brief outline to show the form the turning process takes in the lived experiences of certain individuals who have embraced refused knowledge. Tis is based on a set of 67 in-depth interviews conducted during this research, in accordance with the narrative interview method partially face-to-face and partially online (due to pandemic-related limitations)—and analysed with the support of qualitative data analysis software, although only a small proportion of these will be explicitly discussed here. Te interviewees included both experts engaged in legitimising and disseminating refused knowledge and laypeople belonging to the respective social worlds.

#### **3.3 Conversion Does Not Equate to Awakening**

In various realms of social life, conversion to alternative bodies of knowledge has often been described as a form of awakening. Similar to religious conversion—in which revelation is often experienced as a life-changing event leading to redemption and interpreted by means of a metaphor comparing it to 'waking up' after a long sleep—in numerous other social felds conversion to a new system of beliefs is described by protagonists with an 'awakening' narrative (DeGloma, 2010; Harambam, 2020, pp. 134–137).

Te same narrative is to be found in our RKCs. Here, the awakening metaphor is more frequently applied to others than to oneself, i.e. to those who are considered to be still asleep. For example, Ester, a provaccine choice supporter, hopes

that people wake up, they begin to fnd out more, not to be afraid, because fear blocks you. (Ester/Pro VC)

Tis leverages a frst idea of awakening—that is, the end of a lethargic state, a transition from torpidity to activity. Others adopt a more cognitive idea of awakening that is often linked to the concept of enlightenment, to an image of transition from darkness to light. Luigi is a Stop 5G movement activist. He describes the tough lives of those suffering from electro-hyper-sensitivity (EHS), i.e. experiencing physical discomfort in the presence of electromagnetic felds:

You experience abandonment, not being believed, you see this pressing technological progress all around but the people alongside you do not believe you (this is a big problem), and there are no answers from the institutions. It is a very marked condition of isolation. (Luigi/Stop 5G)

In this state of solitude, electro-hyper-sensitive people experience darkness, a situation in which they feel something that nobody else can see. Terefore, meeting people who share their experiences is seen as a sort of enlightenment, as light at the end of a tunnel. For example, describing the origins of the Italian association of EHS suferers (Associazione Italiana Elettrosensibili, AIE), which is a striking case of biosolidarity (Bradley, 2021, pp. 543–546), Luigi added:

I fnd other people like me, and *I see the light*. I say to myself: 'wow, I'm not alone'. (Luigi/Stop 5G, my emphasis)

Although the awakening metaphor gets across the idea of radical change very well, it also provides a misleading impression of *sudden* change. It is an ambiguous metaphor suggesting a clear turnaround in several contexts: the bodily awakening that occurs at the end of a period of lethargy–that is, a transition from torpidity to activity as it is used in the political awakening context; mental enlightenment and the end of drowsiness as implied by the cognitive awakening framework, in which being awake means being aware; the end of a dreamlike state—that is, the transition from illusion to (alleged) reality, as implied in the ideological or religious awakening framework.

However, the turn to refused knowledge is rarely a sudden change. On the contrary, it is usually the gradual deepening of an attitude that the protagonists feel is congenial as it 'resonates' well with their values and habits. As Tomas DeGloma observed, awakening stories are often not personal experiences but cultural patterns adopted by individuals to make sense of their experiences. He claims that 'diferent communities have their own *foundational awakening stories* that although not all purely autobiographical, provide story templates and cultural tools that individuals use to construct their personal awakening accounts' (DeGloma, 2010, p. 522, see also Chap. 7 of this book by Crabu). Accordingly, I would argue that when interviewees use awakening images for the changes taking place in their lives, they are employing a cultural resource of use in making sense of what happened, which, however, conceals the lengthy underlying journey towards adhesion to refused knowledge. For example, Piera—an anti-gymnastics teacher and 5BLs follower—recounted:

Homeopathy came via friendships, as I hadn't solved my problems and maybe the [medical] approach did not resonate with me. In my case, at the beginning there was a hormonal problem, so, you know, they send you to the endocrinologist, who starts giving you pills. I felt that such pills might be fne, rationally they help, but they upset me. [...] Approaching homeopathy—by the way, the homeopathy of an anthroposophical doctor, hence based on that kind of research—led me to reconsider everything a bit. Anti-gymnastics arrived in high school via the gymnastics teacher who was a fairly alternative teacher and lent us a book. […] Trough antigymnastic work we feel what is good for us step by step through our bodies. […] For me the 5BLs have also meant this: deepening the biological meaning of what the body expresses even more. (Piera/5BL)

Piera's movement towards the 5BLs—originating from a physical condition to which traditional medicine provided unsatisfactory answers was gradual and passed through various alternative approaches to health (homeopathy, anti-gymnastics, Steiner's medicine) in a crescendo of radicalism and distance from science. Tis gradual transition from compliance with science to adhesion to refused knowledge is a common feature of interviewees' stories and confrms earlier research results (Rogers & Pilgrim, 1994). Te following excerpt is paradigmatic. Franco is a hospital nurse and a 5BLs expert proactive in promoting this approach on the web. He told us:

Te problem is that in '93–'94 I got sick with depression […] and I did not know what to do, as conventional drugs kept me sedated but certainly not happy. One day, as I knew a doctor in my hospital who practiced acupuncture, an anaesthetist […], I got curious. I wanted to see if I could fnd a way out through acupuncture. It wasn't really acupuncture [that helped me], it was a decoction of Chinese herbs. After four days of therapy, I was fne, I was really fne. […] So, I got curious, I started studying and I studied Chinese medicine for ten years. I also got a Chinese massage degree since, as a nurse, I am not allowed to do acupuncture, much less Chinese pharmacology. Later, […] I began to be interested in other visions: Ayurvedic; then I read some orthomolecular books, I became interested in herbal medicine, until one day in a summer bookshop here in our area, I found a book by Claudia Rainville […] on the psycho-somatic meaning of symptoms. […] In this book I found a reference to Dr Hamer: 'Who the hell is he?' [I asked myself]. […] I went to read some news online about Dr Hamer, I began to grasp the meaning of what he was trying to disseminate and, oh well, I realised that this was the answer. In the sense that Chinese medicine gave me many answers, but it did not give me the ultimate answer, which is [the answer to the question]: 'Why is this happening to me? Why me?' (Franco/5BL)

Tis narrative touches on several elements which show up very frequently in the personal stories of those embracing refused knowledge. Tey testify to complex trajectories in which circumstantial events act as triggers for choices coming from afar and taking root in people. Like Piera's story, Franco's account starts with 'a problem' (depression). Such transitions often originate from problems (usually health related) that people encounter in their lives. As Michael Bury has argued, health problems often elicit more profound biographical disruptions involving 'a fundamental re-thinking of the person's biography and self-concept' (Bury, 1982, p. 169). An event presents as 'a problem' not only because it constitutes a nuisance or a danger but also to the extent that conventional medicine cannot fnd a quick and efective response to it. Otherwise, it would not be a problem. Tose involved thus start taking note of those recommending alternative remedies—in this case, acupuncture. Te interest in remedies that are alternative to allopathic medicine leads to individuals meeting other people belonging to social worlds in which criticism of conventional medicine is widespread and shared and in which information on alternative medicines is promoted and facilitated. Tus, in a crescendo, individuals encounter new bodies of knowledge rejected by Western science increasingly radically (in this case, Chinese, Ayurvedic, orthomolecular and herbal medicine, and then the 5BLs).

Awareness of the progressive nature of embracing refused knowledge allows us to avoid the simplistic juxtaposition of science and pseudoscience, scientifc and anti-scientifc approaches to problems. Amit Prasad (2022) recently suggested that investigating anti-science claims requires examining not only what these claims afrm but also how they are discursively framed and circulated, as it is only then that we discover that such claims are only rarely truly anti-scientifc and generally critical of 'certain institutional relationships of science' (Prasad, 2022, p. 90). I maintain that the lengthy and complex processes involved in embracing refused knowledge confrm this thesis, as they imply constant negotiation with science. Membership of a particular refused knowledge social world is not defnitive and, neither, frequently, is it complete. Te individual life stories show that, for laypeople in particular, adherence to a body of refused knowledge is often simply a transitory stage towards another and diferent body of refused knowledge better resonating with individual values and expectations: one might believe in the vaccination-autism link as an intermediate step along a path leading to the endorsement of New Germanic Medicine which, in turn, may be an intermediate step on the way to South American shamanism.

Moreover, individuals' adherence to refused knowledge is subject to change and second thoughts and often only partial, in the sense that it does not necessarily imply a willingness to believe all the theoretical statements or defnitions of the facts encompassed by a certain body of knowledge. Quite the opposite, many interviewees place very clear boundaries around the feld of knowledge worthy of belief, excluding not only knowledge accepted by science but also opposing arguments. Olga, a pro-vaccine choice mother and graduate, argued:

Taking sides [in the vaccine quarrel] is exhausting; you need a clear understanding of who people are, their reasons. I feel I have distanced myself from both sides. I don't like the extremism of some people who are critical of vaccinations because I feel that though they do [a lot of] sharing, sharing is a very easy task, all you have to do is click, you just read a few lines and... Over the years some [of them] have labelled people like me—who actually feel extremely moderate—as irresponsible. Tey have exposed themselves to several legitimate criticisms. I have heard people use arguments that are truly bordering on science fction, where somebody who knows just a little more than you can make you look like an idiot. (Olga/Pro VC)

Several other interviewees showed a similarly cautious approach. Angelo, an expert on, and professional promoter of, alkaline water producing devices, said:

I'm saying a very important thing, and it should be emphasised: we are not talking about water that cures, heals or prevents or anything like that. As they taught us, you need to have a healthy diet, drink healthy water. And then it's our own body which heals. […] Tis is a necessary aside, because unfortunately there are all sorts of things on the web. Just think, there are even people who say that water heals tumours and the like. […] Well, it's not part of my ethics and individuality. (Angelo/AW)

Hence, joining a refused knowledge social world is often combined with rejecting certain parts of that body of knowledge and social world. As Olga repeatedly stated, defending a refused knowledge argument is a challenge and not just because it is rejected by science and mainstream communities. Adhering to refused knowledge implies constant renegotiation of one's position in the world.

For the reasons examined here, the metaphor of sudden conversion after a revelation, spiritual enlightenment, awakening is not particularly useful in understanding the process of embracing refused knowledge. It is certainly an element in RKCs' founding narratives (see Chap. 4 by Paolo Bory), but this fact regards the birth of such communities rather than individual adherence to them. It is also widespread among academics criticising what they see as pseudo-scientifc theories (as shown by Harambam, 2020, pp. 182–187), but this is just a clear case of scientifc 'boundary work' (Gieryn, 1983): it says a great deal more about the science which rejects certain bodies of knowledge than the social worlds accepting them.

I will thus now cast aside the religious tropes and examine the transition process, attempting to identify its main drivers.

#### **3.4 Transition Drivers**

As observed above, certain disruptive biographical events appear to act as triggers for the turn to refused knowledge. Yet the outbreak of a 'problem' is usually a trigger, not a driver in the turn. It is the circumstance that causes a number of pre-existing factors to develop and associate into a new assembly that becomes remarkably signifcant in an individual's life.

Certain refused knowledge claim-makers (see Chap. 7 by Stefano Crabu) have a clear understanding of the contingent nature of 'problems' and, simultaneously, their relevance in triggering a possible turn. Indeed, they leverage these to acquaint potential newcomers with their new insights—that is, to enrol them into the alternative social world. Tey act as spokespersons of the new association (Latour, 1987, pp. 70–74). Tis is the case of Giovanni, an expert and trainer in the feld of alkaline water, who himself turned to holistic medicine and salutogenesis (see Mittelmark et al., 2017) following a signifcant 'event' in his life—that is, his father's death from a stroke. Speaking of typical clients, he said

My typical client was someone who had already bounced between one specialist and another without fnding a solution to her problem. So, my protocol is mainly about identifying the cause. Ten I use investigation tools to fgure out what's wrong. Most of the time it all starts from the intestine. […] Te person who turns to me most is somebody who has a problem and cannot solve it. So, what's my job? *It is to bring out the problem*. So, I suggest some tests, which can be a test for evaluating any gut dysbiosis. (Giovanni/AW, my emphasis)

Giovanni leverages a possible problem by 'bringing it out', which implies two aspects simultaneously: making a problem visible and turning it into 'the problem'. By making certain intestinal pH alterations visible via measurements and data, Giovanni brings out what appears to be the 'real' problem that the client was unable to solve and pushes him or her towards an efective solution by means of a diet that includes drinking alkaline water, thereby enrolling the client in the respective social world.

Tis story also highlights that the original problem prompting the client to contact Giovanni had become a problem because conventional medicine had not been able to solve it and led to the client trying a range of specialists without success. Te enrolment in the new association was facilitated by an *interessement* elicited by science itself, which therefore actively contributed to the transition to refused knowledge. Tis is one of a number of factors that occasionally become agents in the *interessement* and enrolment (Callon, 1986) of individuals in a refused knowledge social world. I will examine the most relevant factors below.

#### **3.4.1 Tests, Treatments and Protocols**

In many of the stories told by refused knowledge followers, illnesses and diseases become 'problems' when medicine turns out to be incapable of producing the expected response. For our interviewees, this is mainly due to the following three factors.

Firstly, and most obviously, medicine is seen as incapable of solving patients' problems when it fails to give *quick* and *certain* answers. As Piera and Franco's accounts above testify, interviewees very frequently describe the origin of their 'problem' as the outcome of an attempt to treat a disease through medicine, which turned into an exhausting sequence of visits, tests, uncertain and delayed diagnoses and therapies replete with side efects. When diagnostic tests and medical treatments do not work, when they go 'on strike' (Latour, 1988, p. 298), the whole conventional medicine framework begins to run out of steam.

Secondly, medicine's hyper-specialisation is at fault because it pushes doctors to focus on the disease, or even the symptoms, rather than take care of the patient and heal the body. Protocols are the main actants in this approach to illness. Experts who embrace refused knowledge, especially medical professionals, often see protocols as the main faw in the conventional approach to illness, as the following excerpt makes clear (see also Chap. 7 by Stefano Crabu):

I am absolutely against certain protocols because I maintain that they are not applicable to everyone. Tat is, I am for medicine based on a person's needs. I mean, a guideline is fne, a protocol is fne, but then the protocol must be applied specifcally to that person, it must be contextualised to what we are doing. (Iacopo/AW)

Tirdly, medicine lacks empathy. Patients are not listened to and emotional support is not given. Tis accusation is levelled against medicine by many interviewees, but it is especially evident in the case of electro-hypersensitivity suferers. Tis condition—which emerged from our study of the Stop 5G social world—is not recognised by the World Health Organisation (WHO), which considers it a syndrome of psychological origin arising from a nocebo efect: if you see an antenna and feel sick, it is because you are somaticising your fear of electromagnetic felds. Tis is the 'tragedy' experienced by electrosensitive people, as Luigi—the president of the Italian association of EHS suferers (AIE)—emphasises: 'By not recognising EHS, WHO efectively prevents national health systems from carrying out adequate diagnostic, prognostic and therapeutic processes. Tere is a segment of the population totally abandoned, which partially—in one way or another—joins us' (Luigi/Stop 5G). Te 'state of abandonment' in which health systems leave patients sufering from symptoms that they attribute to electromagnetic felds pushes them to turn to those who listen to them and take their concerns seriously, that is, to institutional subjects of refused knowledge social world, such as AIE.

#### **3.4.2 Social Relationships and Family Background**

Tus, it is no surprise that joining an RKC generates a magnetic feld which reinforces individuals' interest in, and adherence to, that body of refused knowledge. Te above 'state of abandonment' drives people into the arms of AIE, which not only provides emotional support but also urges them to take an interest in the refused knowledge itself.

Yet individual actors may play a key role here as the network's spokespersons, to an even greater extent than communities and groups. Frequently, such individuals act as guides or life teachers prompting individuals to venture into the refused knowledge *terra incognita*. Tey are often friends, as in the case of Beatrice, an independent 5BLs populariser, who told us:

At forty I was really a disaster: always sick. After a trip to India, I had furunculosis for four years. And there, in fact, some friends told me: 'Look, try to make some changes. Watch your diet!' Until I was forty I had never linked up diet and state of health, therefore, all of a sudden—this friend was a raw food vegan—[…], the transition to raw was incredible: in a week I felt like I had never been so well. (Beatrice/5BL)

In some cases, these actors are charismatic claim-makers—that is, experts recognised by a community of followers who acknowledge their right to set the correct interpretation of a given situation. An interesting case of this type is Térèse Bertherat (see Bertherat & Bernstein, 1980), a French physiotherapist who invented anti-gymnastics and steered Piera to the discovery of the 5BLs community. As a charismatic fgure, Térèse was a point of reference for her community of followers, in terms of values and norms. When Piera was faced with an emergency—a severe pain in her shoulder that Arnica could not treat at a time in which she was unable to contact her homeopath—she turned to a friend who was also an anti-gymnastics teacher and this friend told her, 'Térèse would tell you: don't remain in pain. Because pain isn't good for you, it doesn't allow you to be clear headed. [...] I'm sure Térèse would tell you to take a painkiller' (Piera/5BL). As an actant, the fgure of Térèse exerted infuence on her followers even in her absence, as an 'entity that does not sleep' supporting 'associations that don't break down' (Latour, 2005, p. 70).

In many cases, the part played by the environment of origin is an important one via the infuence of parents, other family members or friends, who prepare the way for the growth of interest in refused knowledge. For example, Carla, a 5BLs follower, talked of a sister interested in 'mystical things' who, like her mother, became a Buddhist. Her sister was the intermediary who introduced her to Hamer's theory and to a number of New Germanic Medicine experts as well. Similarly, Nunzia, a provaccine supporter whose father abandoned a family of four children, grew up in the care of a wealthy aunt who was extremely interested in 'natural nutrition, shiatsu, meditation, all these things' (Nunzia/Pro VC).

#### **3.4.3 Education**

Education is a notoriously important driver in the dissemination of knowledge refused by science, not because adherence to refused knowledge is fostered by scientifc illiteracy but, quite the contrary, because it correlates with a high educational level (McCright & Dunlap, 2011; Veldwijk et al., 2015; Yang et al., 2016). Tis is confrmed by our research, though within the limits of a qualitative approach. Having interviewed several highly educated subjects, the role played by higher education in the process of embracing refused knowledge becomes visible, especially in relation to medical or nursing education, which several of the interviewees had. Te knowledge of these latter on human physiology, chemical reactions, various medical doctrines, physiotherapy practices and so on is a resource that experts as well as laypeople can easily draw on to justify their adherence to refused knowledge. We have already met Franco and Iacopo, who base their refused knowledge expertise on their previous nursing and medical education.

Yet, formal qualifcation is not the only way of acquiring knowledge strong enough to support resistance against scientifc rejection. Several members of these social worlds with varied educational backgrounds have, over the course of time, developed wide-ranging competence in medical or physiological matters to strengthen their adhesion to refused knowledge. Tus, their biographical turns are rarely based on blind faith and pure trust in individuals or institutions. More often, they are founded on arguments rich in technical data and specifc information that is occasionally syncretistically derived from fragments of specialised training and otherwise from self-education and constant netsurfng.

#### **3.4.4 The Media**

Obviously, media is a fundamental driver in such transitions, particularly since, for many, the internet is their primary source of information in the process of *interessement* for refused knowledge. Yet, it does not work as a guide. In Chap. 5, Simone Tosoni argues that the 'university of Facebook'—as an interviewee (Nunzia/Pro VC) calls the immense wealth of information stored on the internet or actively available through social networks—must be understood as primarily a narrative ecosystem (see also Innocenti & Pescatore, 2017). Tis means that the internet works as a repository of news, discourses, arguments, symbols and everyday events that can be appropriated to interact in a specifc social world, such as an RKC, or to justify non-conformist choices to those who either do not share them or oppose them. Accordingly, in the turning processes, the media system complements social relationship networks and extends and supplements the information circulating ofine. A turn to refused knowledge mainly or exclusively based on media information is not a pattern. Obviously, the media system also ofers newcomers a space of interaction in which enrolment can be activated, practiced and made known.

#### **3.4.5 Personal Dispositions**

Pre-existing factors also include personal dispositions, specifc attitudes, even the reprocessing of experiences dating back to childhood or family relationships, as the following excerpt makes clear:

My mom had a difcult delivery. [...] So I was born with a broken collarbone, and my mother really sufered and was always telling me 'Tey stitched me up to the rectum'. In short, I didn't understand that the problem was me being big, because I was born weighing 4.2 kilos. [...] Ten you blame yourself a bit: I was big, so, you know, it hurt her. (Nunzia/Pro VC)

Nunzia resorted to this narrative, which evokes a powerful emotional charge in her relationship with her mother, to make sense of her 'problem': a miscarriage followed by a curettage that she refused to have done. Te bridge she built between the accounts of her own birth and her decision to refuse medical aid after her miscarriage is revealing of a disposition against surgical intervention in a context related to giving birth. Clearly, the origins of this disposition date back to previous experiences that escape sociological observation.

Other interviewees occasionally resorted to conspiracy theories, which however appeared to be a general framework designed to make sense of the world rather than a specifc interpretation of their 'problem'. Such a framework is then activated in the turning process and applied, for example, to frms considered to be at fault for pursuing their economic interests rather than meeting the real needs of sick people: pharmaceutical companies, grouped under the Big Pharma umbrella concept, or communication companies, especially in the case of the Stop 5G community.

#### **3.5 The Turning Process Is Not Driven by an Anti-scientifc Stance**

Just as the awakening metaphor is not an appropriate way to describe the turn to refused knowledge, interpreting individuals' refusal of science by means of categories such as anti-scientifc attitude, irrationalism, spiritualism and esoterism is equally inappropriate. Te dominant attitude within refused knowledge social worlds is characterised by a marked rationalism, in accordance with the standards of Western science. As Michael Lynch has argued, contrasting 'objective facts' and 'appeals to emotion and personal belief' fails to capture the nature of refused knowledge communities: 'Instead of an outright rejection of science and objectivity, what is involved is an efort to produce adversarial claims to objectivity and institutional supports for those claims' (Lynch, 2020, p. 50).

RKCs' ambivalent attitude—characterised by bitter criticism of institutional science and enthusiastic emulation of its procedures, repertoires and language—is particularly visible in the work of refused knowledge experts. As Chap. 2 by Federico Neresini illustrates, several strategies for legitimising and building epistemic authority are widespread in refused knowledge social worlds, from boundary-work to syncretism and mimicry. Experts resort to such strategies to create and strengthen their epistemic authority.

In this context, what is particularly relevant to this chapter's topic is the fact that this compliance with the framework of practices and values typical of Western science is characteristic of the attitudes not just of experts but also of their followers. In fact, this is a sign that the turn towards refused knowledge is not dictated by a fight into the irrational, but by a profound dissatisfaction with the practice of scientifc and medical research and the constraints imposed by the knowledge such research generates. Te case of Davide, who is vaccine hesitant and rejects the ofcial COVID-19 pandemic statistics, can be considered an adequate representative of the opinion of numerous interviewees.

Originally from Uruguay and father of two, Davide sufers from diabetes and hypertension and thus had to lose over 30 kilos in weight. He moved away from institutional medical advice because, he says,

today's doctors, [...] you go there, and frst of all they tell you: 'What's wrong? Take these [pills], two in the morning.' It doesn't work like that. First you have to know what you eat, what you do, what you are. Try to eat less than this, and then we'll see. Don't immediately prescribe medicines. [...] Tat's why I started to change my life. (Davide/Pro VC)

Davide began consulting various experts on the web, thereby building his own knowledge of human metabolism and experimenting with various weight-loss stratagems. He considers it very important to rely on an expert, 'because he knows more', but he also argues that 'you need to evaluate what [the expert] tells you, not shut your eyes and say okay, I'll do this. We are capable of reasoning and saying, 'No this guy is telling me lies'. Try and try again. I tried with nutrition until I found what was right for me' (Davide/Pro VC). What was right for him was a Scientology expert and author of several YouTube videos.

Terefore, Davide's biographical turn is not a rejection of critical thinking but is based on a strengthened form of it. Te fact that the experts he relies on are outsiders to the world of science originates from a profound distrust in the honesty of scientists and the impartiality of their institutions, rather than a distrust of the scientifc method per se. Tis attitude often relies on a distinction and juxtaposition between good and bad science, authentic science and degenerate science—the former ready to accept refused knowledge, but a minority at the institutional level, the latter hostile to refused knowledge because it is corrupted by economic interests. As Harambam has shown (2020, pp. 187–198), the opponents of science often argue that it falls far short of the ideal of sound objective science, because the connection between research fndings and fnancial interests makes it difcult to consider scientists truly disinterested. According to the opponents of science, published scientifc research is manipulated and those calling themselves scientists are traitors to the authentic scientifc spirit. Tis attitude comes across in Davide's words, attributing responsibility for medicine's degeneration to the economic interests of pharmaceutical companies.

Tere is a huge interest from pharmaceutical companies in keeping patients customers. You're not dead, you're sick, we keep you there, sadly. If you die, I lose a customer; if you fnd an efective cure, it's not even useful. (Davide/Pro VC)

#### **3.6 The Role of a Para-Scientifc Legitimisation of Knowledge**

Briefy, refused knowledge social worlds refer to a widely shared model of knowledge which is basically rational and closely resembles scientifc practices in its structure. It is consistent with, and leveraged by, the legitimisation strategy defned in Chap. 2 as mimicry, as it often deploys the same argumentative frameworks and scientifc communication rhetoric (see, e.g., Lee et al., 2021), although it misunderstands the social dynamics that science works in accordance with and, obviously, does not share some of its contents. I will call this model of knowledge 'para-scientifc' to avoid the prefx 'pseudo', as this implies a distinction between orthodox and deviant science, which is not purely descriptive and involves a normative stance (Dolby, 1979, p. 11). Te prefx 'para' emphasises an afnity with science, rather than the diferences from it.

Discourses supporting or justifying the transition to refused knowledge by leveraging a para-scientifc model mainly pertain to three arguments: (a) the reasons for believing it; (b) the reasons for adhering to it; (c) the reasons for not believing parts of it. I will now closely examine these arguments, focusing on the stories of three 5BL interviewees— Carla, Maria and Piera.

#### **3.6.1 Reasons for Believing in Refused Knowledge**

Respondents describe refused knowledge as logical, convincing and capable of explaining situations. For example, Piera, who joined the 5BLs movement by way of anti-gymnastics, described her biographical turn in the following manner:

Anti-gymnastics helps people rediscover that the body has an intelligence. If it sends signals, these signals always make some sense. So, when I then came across the 5BLs, it clearly ftted. It all added up, taken together, and gave everything an ever richer, ever more stable meaning. (Piera/5BL)

Refused knowledge is convincing to Piera for two reasons: (1) because it is capable of making sense of the 'signals' coming from the world, and people's personal experiences in particular, and (2) because it shows consistency, robustness, a capacity to explain situations in an intelligible and relatively simple manner: 'It all added up'. Tis, incidentally, highlights that her discourse leverages two fundamental arguments of the classical theory of truth: correspondence (of representation to reality) and consistency (of theory in itself).

In certain cases, the intelligibility of refused knowledge takes a logical form that is typical of scientifc knowledge and recognisable by laypeople. For example, Carla accords great explanatory power to the argument 'as if' derived from Alejandro Jodorowsky's psychomagic (see Jodorowsky, 2010), since she sees a compelling logic in it:

I go [to the osteopath] and he tells me, 'Your stomach is so upset because you are tense, [...] it's as if you're being punched in the stomach'. When someone tells you 'it's as if', he knows Hamer, don't bullshit me! So, he said, 'It's as if you're being punched in the stomach, when you get punched, what do you do? You take it!' So, I was hunching over and I thought it was [a problem with] my shoulder, instead it was just a consequence of my posture: I took the punch and hunched up. So, she unlocked my diaphragm, straightened my stomach, and I have miraculously got straight again. In two sessions! (Carla/5BL)

While medicine often attributes discomfort to impalpable (e.g. microorganisms) or abstract (e.g. stress) causes, the unconventional explanation appears more convincing to Carla because it is more directly bound up with her personal lived experiences, such as a punch in the stomach. As Chap. 2 illustrates, this recurring refused knowledge attitude involves contrasting authentic and erroneous approaches to empirical evidence (see also Crabu et al., 2023). While the authentic method consists of appealing to experiential knowledge—i.e. the subjective, personal evidence of the individual who experiences a certain situation (illness, healing)—degenerate medicine usually resorts to statistical or experimental data, an impersonal form of knowledge which remains opaque, particularly for patients, who are not experts. Ultimately, the para-scientifc model of knowledge legitimisation is based on 'the self as the source and arbiter of all truth' (van Zoonen, 2012, p. 56), which is the fundamental characteristic of an epistemic approach that, according to van Zoonen, is widespread in today's popular and political cultures, but whose relevance was identifed by scholars long ago as patients' need to supplement the knowledge gained from scientifc sources with their own biographical experiences (Comarof & Maguire, 1981).

#### **3.6.2 Reasons for Adhering to Refused Knowledge**

Carla's story introduces the second cluster of discourses in which the rational and refective character of the turn to refused knowledge emerges: the reasons for adhering to it. While the reasons to believe in refused knowledge fall within the sphere of logic and deduction, the reasons for adhering to it pertain to the sphere of evidence and efcacy. Te strongest evidence for knowledge claims pertaining to health is obviously recovery from a disease. Tus, why turn to refused knowledge? Because it works. People agree to adapt their choices and behaviour to the dictates of refused knowledge because they feel it is efective ('I have miraculously returned straight. In two sessions!') and clearly responds to their needs. According to Maria:

it brought me to recovery [because] when I left hospital I started asking myself questions and doing research. And found out about the New Germanic Medicine. I understood that there was something else, you know, because it was like I healed myself. (Maria/5BL)

Tis is perceived as evidence, as she then says, 'I'm crazy, you know, but I also want the scientifc thing'.

Within this narrative, the comparison with medicine is an essential step, as we have seen. People embrace a specifc body of refused knowledge because it works, whereas prevailing medical treatment has not worked for them. Carla emphasises that the alternative solution worked immediately and unequivocally, while medicine does not provide defnitive answers, envisages relapses and does not conceal the tentative nature of its treatment. Similarly, Piera emphasises that it works cleanly, while medicine has side efects, harms the body physically and emotionally and poisons it (with chemotherapy). In this context, Davide's comment gets straight to the point:

If I know that the results [of my own weight loss method] are good, even if the Nobel prize winner tells me it's not good, I don't give a damn, I look at this. Watch me! (Davide/Pro VC)

#### **3.6.3 Reasons for Not Believing in Parts of Refused Knowledge**

Finally, the para-scientifc model of knowledge is tangible in discourses supporting the turn to refused knowledge by giving reasons not to believe in certain refused-knowledge claims. RKC adherents often place rather precise limits on the feld of knowledge worthy of trust, rejecting knowledge claims which appear to be unreliable or, at least, unconvincing, even if opposed to ('degenerate') science. Carla, who attributes great explanatory power to the 'as if' argument, considers Jodorowsky mad when he suggests stranger therapies:

For example, Jodorowsky suggests treating warts by cutting it into slices, take a red onion, cut it into slices and place the onion on the wart! (Carla/5BL)

Maria resists fully joining the 5BLs because they are not entirely clear, as she sees it:

With the [New] Germanic Medicine this is the problem: it is downplayed partly because there is little clarity in New Germanic Medicine. Te reason why I am waiting to go to the [5BLs] doctor in Cosenza is precisely this that I haven't found answers. (Maria/5BL)

Piera makes a similar point, having decided not to follow her doctor towards quantum and vibrational medicine, because this development did not 'resonate' with her:

Some things that she proposes do not resonate with me and I have never used them, I have never experienced them. For example, she is a fan of Reconnection, have you heard of it? It's a method that comes from America. (Piera/5BL)

Ten she adds, implicitly explaining what it means if something does not 'resonate' with her:

Well, all these things, even the name, leave me very perplexed. (Piera/5BL)

Tus, there are several reasons not to believe in certain refused knowledge claims: because they are not plausible, barely believable, illogical, they leave people perplexed (unconvinced), and appear to lack a scientifc basis. Or, fnally, because refused knowledge cannot solve all kinds of problems. While she is ready to tackle tumours through refused knowledge, Piera describes her newly acquired awareness that alternative medicines cannot solve all problems as making things clearer:

Over the years it's got clearer to me. So, today I know that if I happen to break my leg I'll go to the hospital, absolutely, and I will thank all those doctors who help me with surgery, with cortisone, or any other remedy they know to get my leg back to normal. (Piera/5BL)

Briefy, the set of practices on which the para-scientifc model of knowledge is based (deductive logic, empirical evidence and systematic scepticism) closely resembles and almost replicates that of science. However, in adopting this model, those adhering to refused knowledge adopt a vision of scientifc work based on the idealisation of science performed by epistemological enquiry, disregarding the more contorted trajectory taken by real science, made up of controversies and alliances, theoretical uncertainties and empirical inconsistencies, material constraints and economic drivers—a set of activities which nevertheless work well in stabilising useful knowledge.

Te fact that the para-scientifc model is leveraged not only by experts when they represent refused knowledge in public but also by laypeople stating their reasons for adopting refused knowledge indicates that mimicry of the scientifc approach is not merely a strategy with which to strengthen one's epistemic authority and legitimise a professional feld. Tese discourses are not merely boundary work tools but also impact on the motivations underlying individual transition processes. In other words, they shore up biographical turns.

# **3.7 The Moral Career of Refused-Knowledge Supporters**

As we have seen, medicine is a fundamental driver in the turn to refused knowledge: it fosters adherence to the very same bodies of knowledge it deems unreliable, wrong or fake. In fact the transition is often driven by a centrifugal force that prompts people to distance themselves from common medical practices they consider inconclusive, dangerous and dehumanising. Hence, in some respects the gradual turn to refused knowledge resembles the structuring of a moral career. Without overstating the appropriateness of this analogy, I believe that the theory of moral careers can help to highlight how science's institutional context actively participates in the process of structuring adhesion to the very same knowledge it refuses. In fact, it behaves somewhat like the social institutions responsible for the social control of deviance studied by Erving Gofman (1959) and Howard Becker (1963). Like in deviance, certain social factors channel personal biographies in a direction that is by no means predetermined by the original condition of a subject and is, therefore, the outcome of processes which are superordinate to them.

To begin with, science cultivates an impersonal approach to knowledge. When knowledge is closely bound up with people's lives, as in the feld of medicine and the human body, the impersonal approach cultivated and performed by doctors feels like cold indiference to people's fate, an indiference which makes scientifc knowledge seem detached, distant and useless. As we have seen, hyper-specialisation and lack of empathy are aspects of medicine which interviewees stressed in their explanations of the reasons behind their adherence to refused knowledge. Tey create the breeding ground on which refused knowledge social worlds grow, made up of a desire for acceptance and personal relationships, a need to value personal experiences, a yearning for a harmonious relationship with one's body and a search for certain answers—all aspects which are lacking in conventional medicine and, therefore, pursued outside it.

Moreover, science boundary work confnes refused knowledge to the non-scientifc sphere, thereby building a wall which is then exploited by this same refused knowledge to legitimise itself as true science. In Chap. 2, Neresini argued that the boundary work necessary for the construction and maintenance of a body of knowledge involves a complementarity between what is inside and what is outside its confnes. Te existence of a boundary implies the existence of a territory beyond it, an 'other' social world. But this holds true in both directions. Tus, the very same boundary work by which science preserves its purity and builds its epistemic authority pushes those who feel uncomfortable with this purity to join RKCs. Tis is even more evident when science takes up legal weapons, as is the case of the Italian Medical Council's authority to strike doctors failing to abide by the profession's code of ethics of the medical register. Since the register is mandatory for medical practice in Italy, the Medical Council has great power to direct the profession and put pressure on individual practitioners to meet certain standards. Tis power materialises in the construction of a clear and rigid border between conventional medicine and alternative forms of medicine, the latter being considered inefective by the Council and, therefore, rejected. In our feld of enquiry, this specifc power of science emerges with great force in the case of the 5BLs, given that several former doctors have been struck of the Register for treating cancer patients according to the principles of New Germanic Medicine. Tus, the Council has become the main target of 5BLs experts. In a video interview published on YouTube, Paolo Sanna, a 5BLs populariser who did not complete his medical studies, has said very explicitly:

I could complete my studies now, but there are two reasons why I won't. First, because […] I don't have the time. And, secondly, because as soon as I qualify as a doctor I would be immediately struck of, so it would be absurd, it wouldn't make any sense. Terefore, I'm studying the subject without graduating. I don't practice medicine because I'm not [a doctor], I disseminate this knowledge as an operator. (Sanna, in Ballarini, 2020)

Hence, science contributes to the structuring of RKCs. Adherence to refused knowledge is a step-by-step process in which pockets of resistance persist. Tis is precisely why rejection by science facilitates the structuring of a moral career: it classifes and standardises what is inherently nonstandard. Not only does it exclude a certain body of knowledge from the sphere of what is legitimate thinking, but it also automatically generates the categories of pseudoscience and anti-science, which individuals are ultimately labelled with, thereby hardening what is changeable and still in the making (Bowker & Star, 2000). Moreover, this structuring efect of classifcation is not solely a consequence of constraints exerted externally (for example, being struck of), but also of identity-building processes (Matza, [1969] 2010, pp. 165–180). Classifcation implies normalisation, generating labels by which individuals self-identify and make sense of their life paths, and creating social worlds characterised by a range of expected behaviours, shared frameworks with which members make sense of reality, and legitimate models with which they organise their experience.

In sum, it is the social interpretation of an intrinsically ambiguous experience, such as dealing with a problematic health condition, that transforms it into something defnite and makes it conform to a specifc pattern of action—such as embracing refused knowledge and joining an RKC. Te turn to refused knowledge often originates from a 'problem' that fnds a solution outside the canons of science. But this is just an event in life, a single experience, it still does not make defnite sense. Te mainstream typifcation of such an experience as 'adhesion to refused knowledge' (in common parlance, faith in pseudoscience) helps to give it recognisable meaning. Boundary work, as we have said, is reciprocal and complementary.

#### **3.8 Conclusion**

Tis chapter enquired into the trajectories that lead people to trust knowledge refused by science. Implicitly, I assumed that science has great epistemic authority in today's Western societies (Hendriks et al., 2016), thus the structuring of stable forms of dissent is by no means obvious and requires explanation. I observed that the biographical turn to refused knowledge is not unforeseen and sudden, but sometimes lengthy and often complex; that this process usually passes through various knowledge terrains not accepted as valid or trustworthy by the scientifc community; and that it frequently reveals a progressive radicalisation trend towards bodies of knowledge that are increasingly alternative and less compatible with recognised scientifc knowledge.

I then described several drivers of this turning process and focused on the triggering role often played by specifc health events in individual biographies, as well as on the reasons why medicine contributes to translating such events into 'problems' that only refused knowledge can help to solve. Tis translation of health events or conditions into problems enables them to exert specifc agency, shoring up the turn to refused knowledge. I also argued that turning processes of this kind are not normally driven by anti-scientifc stances because they actually rely on a powerful faith in a simplifed understanding of the scientifc method based on a para-scientifc interpretation of a number of practices typical of Western rationalism, such as deductive logic, empirical evidence and systematic scepticism. Finally, I attempted to interpret the role of conventional medicine in these processes in the light of the theory of moral careers in order to show that the turn to refused knowledge is not simply a matter of the characteristics of the individuals involved, nor it is only due to the RKCs' magnetic force, but it must also be traced back to the structuring of individual trajectories prompted by science, in particular by medicine, precisely by virtue of its institutional nature.

Tis leads us on to the following concluding question: Why does the opinion of the scientifc communities—i.e. of socially legitimate and especially authoritative institutions in contemporary Western societies not deter certain people from embracing refused knowledge? Te stories collected and analysed above ofer a few possible answers, revealing that certain distinctive features of scientifc knowledge contribute to the scientifc failure to discourage those turning to refused knowledge.

Scientifc knowledge is not up to expectations because it is not based on individualistic knowledge validation criteria but rather on intersubjective criteria and institutionalisation processes. Adherence to refused knowledge is often based on an epistemology which emphasises experiential knowledge. By contrast, scientifc knowledge seeks legitimacy from a community of experts endowed with epistemic authority. Adherence to this type of knowledge is based on trust in this community and recognition of this authority and, therefore, requires laypeople to perform an act of entrustment, renouncing personal verifcation and also often accepting ideas and interpretations that confict with their personal experiences (such as accepting the idea that the sun does not revolve around the earth). In certain cases, particularly when our health is at stake, this renunciation is no simple matter.

Moreover, scientifc knowledge is not up to expectations because it is provisional and controversial by nature, which implies that scientists are used to conveying caveats regarding scientifc fndings. However, this is not always welcome to laypeople, as it 'throws individuals back on their own stock of knowledge and biographical experience' (Bury, 1982, p. 174). As recent studies have shown, preferences regarding the sharing of information on the uncertainty of scientifc results vary (Ratclif & Wicke, 2022), with multiple audiences existing. Some of these audiences are not ready to deal with the uncertainty of knowledge. By contrast, the refused knowledge mission is frequently assertive rather than investigative, as it arises to support a stance rejected by science. Refused knowledge experts can thus deliver the certainties that orthodox scientists cannot.

Furthermore, scientifc knowledge is not up to expectations because it is conveyed through impersonal forms of communication rather than interpersonal relationships. Tis is true, frstly, in the feld of scientifc writing, but it is also true of dissemination and, above all, of direct contact between experts and laypeople. Medical doctors normally put communication with patients on an impersonal plane because this is the plane on which their knowledge and epistemic authority are legitimised. Conversely, disseminators of refused knowledge often leverage emotional bonds to convey concepts and ideas.

Finally, scientifc knowledge is not up to expectations to the extent that scientifc institutions, which are the custodians of such knowledge, contribute to structuring the moral careers of the supporters of refused knowledge. Tere is a contradiction implicit in science's role in stabilising socially useful knowledge: when it draws a boundary between what is scientifc and what is not, it weakens the trustworthiness of knowledge classifed as scientifc in the eyes of those who consider knowledge classifed as unscientifc or pseudoscientifc as personally useful.

In introducing this chapter, I argued that studying the transition to refused knowledge is a tool with which to increase our understanding of the stabilisation of knowledge that is accepted and legitimised by scientifc communities. Indeed, the reasons leading people to refused knowledge—insofar as they are not irrational motives but replicate the scientifc posture simply by translating it into alternative, para-scientifc practices and reasoning—constitute a very rich basis of data and food for thought with which to revisit our understanding of science.

#### **References**


**Open Access** Tis chapter is licensed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/ by/4.0/), which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence and indicate if changes were made.

Te images or other third party material in this chapter are included in the chapter's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the chapter's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder.

# **4**

# **Us and Them: Martyrs, Prophets and Mythic Narratives of Refused Knowledge**

**Paolo Bory**

## **4.1 Introduction**

In the public debate, refused knowledge communities (RKCs) openly contesting the scientifc community and expertise are usually labelled as marginal, fragmented and/or minoritarian aggregates of people. Te claims and demands of such communities are rarely accorded space in the mainstream media, such as national newspapers and TV. Even when widespread opposition to ofcial science is publicly acknowledged (e.g. in political debates and talk shows), it is usually depicted as the extemporary and irrational response of misinformed people to certain issues of public concern. During the COVID-19 pandemic in Italy, for example, the contestation of scientifc institutions was portrayed as a spontaneous reaction triggered by fear and panic, rather than the outcome of a longstanding process by which people share everyday practices, information sources and social and cultural beliefs. During the pandemic,

P. Bory (\*)

Department of Design, Politecnico di Milano, Milano, Italy e-mail: paolo.bory@polimi.it

communities opposing mandatory vaccines or emergency laws, as well as alleged violations of constitutional rights and individual freedoms, were relegated—by the mainstream media in particular—to the domain of irrational, hysterical and feeting reactions typical of the populist hype emerging in crisis contexts (Mede & Schäfer, 2020; Tomasi, 2021).

However, contrary to this partial and monolithic perspective, not only do most RKCs share certain key social practices, experiences (Crabu et al., 2022) and information on an everyday basis but the members of these communities also share stories (i.e., anecdotes, key characters and historical events) which may contribute to their epistemological and cultural foundations. Both distant and recent, these narratives provide RKCs with a set of common beliefs and reference models from the past and the present. But most of all, shared narratives bond communities more closely together, thus strengthening their members' sense of belonging, and drawing—as I will argue—on the boundaries between RKCs and other social worlds.

Te purpose of this chapter is to enquire into RKCs' mythical narratives to highlight the relevance of certain key fgures, events and objects around which these communities weave their common goals, visions and sense of belonging. By analysing the construction of, and tropes surrounding, mythic narratives—both scientifc and religious—the sections which follow will also emphasise the ways such narratives stimulate everyday discussions, practices and even ritual forms within RKCs. In addition to martyrdom stories, a special focus on the myth surrounding Dr Ryke Geerd Hamer and the foundation of German New Medicine will also serve to display an archetypal story in which mythic science and the religious prophet trope interweave.

Tis chapter is divided into four sections. Section 4.1 focuses on the relationship between science, myth and narratives and shines a special spotlight on the 'mythic science' concept in historical and popular accounts of scientists' lives. Section 4.2 dwells on RKCs founding and mythical narratives, listing a series of recurring patterns characterising the RKC 'martyrs'. Section 4.3 enquires into the archetypal intertwining of mythic science and religious/prophetic narratives within one of the communities under scrutiny, the 5BLs community, also focusing on the key tropes surrounding the biography of its founder Ryke Geerd Hamer, revolving around this prophet/scientist's revelation, conversion, persecution and exile, his commemoration and the dissemination of 'false prophets' and internal schism within the community. Te last section summarises the main contents of this chapter in order to highlight the relevance of these founding and mythic narratives as bonding stories contributing, on one hand, to internal RKC cohesion and their positioning within a specifc social world and, on the other, to demarcating these communities from the rest of society. As I will show, this opposition should not be understood purely from a scientifc perspective but also seen in all its socio-cultural, political and anthropological diversity.

#### **4.2 Scientifc Myths, Mythic Science and Founding Narratives**

In recent decades, mythical science and technology narratives have been analysed not only by historians but also in Science and Technology Studies (STS) and by media scholars, who have emphasised the importance of recurring tropes, anecdotes and characteristics of the birth, emergence and co-shaping of technologies and scientifc innovations within a variety of socio-cultural contexts (e.g. Flichy, 2007; Jasanof & Kim, 2015; Ortoleva, 2009). As these scholars argue, in common with geographical and archaeological discoveries, techno-scientifc achievements and revolutions have been often narrated from the starting point of founding stories, or myths, which provide a simple explanation of certain crucial steps in the history of science and technology. Recently, in his *A Final Story*, historian Nasser Zakariya stressed the longstanding complexity of the relationship between the terms 'science' and 'myth', seeing two main ways of ensuring dialogue between the two.

On one hand, ''scientifc myth' is presented as an enlightened and reasonable tale, a self-interrogated superstition, the rational submission of reason to the need for meaning' (Zakariya, 2017, p. 9). Scientifc myths frequently oversimplify the process underlying scientifc inquiry—for example, mishaps, mistakes and empirical or theoretical failures during research—to provide laypeople with an accessible, easy-to-understand (and use) story. In other words, scientifc myths are user-friendly stratagems with which the history of science can be made more universally understandable, familiar and immediate. Scientifc myths are generally very simple and rely to a greater extent on storytelling than the complexity and potential contradictions emerging from historical sources. Tink, for example, of the anecdotes surrounding scientifc discoveries, such as the apple falling on Isaac Newton's head and inspiring him with the formulation of the universal theory of gravity or of the decoding of Nazi codes by a lonely Alan Turing stubbornly working away at his Enigma machine or, once again, to the many stories surrounding the discoveries of such polyhedric geniuses as Tesla and Pasteur.1

On the other hand, although meaningful per se, such anecdotes do not always stand alone, but can act as lynchpins for wider narratives contributing to what Zakariya labels mythic science which he sees as entailing more salient tensions and cultural resonances. Mythic science is an already tamed, if multivalent phrase, the adjectival form of myth bearing little suggestion of 'objectively false', but rather the sense of 'epically scaled' or 'famously successful' (Zakariya, 2017, p. 9).

Mythic science is based on more than simply anecdotes and stories emphasising the ingenuity of inventors and scientifc fgures but also showcases a longer, more troubled story of struggle between geniuses and their theories/discoveries and a hostile system which, in order to preserve the status quo, even went as far as rejecting the clear empirical proof he provided. In this regard, mythic science presents scientifc achievements and innovations as an epic fght between brilliant minds and a system that resists the threat they pose to normal science, and not only on the scientifc but also on the political and economic interest planes. Tere is nothing accidental about the fact that, in narrative terms, mythic science usually melds with epic, for example hybridising inventors' histories with the hero's journey narrative trope (Natale & Bory, 2017), as outlined by Joseph Campbell in his famous book on recurring patterns in worldwide mythologies and epics (2008).

<sup>1</sup>Te life of Pasteur is a case in point of the struggle between scientifc myths and mythical science and historical enquiry (see Cavaillon & Legout, 2022; Latour, 1987).

#### **4 Us and Them: Martyrs, Prophets and Mythic Narratives…**

On their part, historians have bitterly criticised the production and dissemination of these narratives. For example, Douglas Allchin (2004) labelled scientifc myths 'pseudo-histories', comparing the lack of reliability of their sources to the empirical fallacies of pseudoscience. By contrast, several authors have emphasised that myths and, in turn, mythic science should be read through a range of lenses. Rather than seeing these narratives as false or fctional tales, it is more helpful to shed light on the meanings conveyed by founding myths and narratives, especially the possible reasons underlying their long-term persistence in the social imaginary. In this regard, since myths are socio-cultural sense-making tools, they act as 'bridges between the human and the cosmos' (Ortoleva, 2019) and should be studied less in true/false dichotomy terms than as living or dead beliefs (Mosco, 2005) prevailing over historical enquiry or empirical revisionism.2

Where RKCs are concerned, scientifc myths, and mythic science in particular, are extremely widespread and serve as precious narrative resources within their social worlds. For example, certain key mythic science concepts are used as analogies with which to justify these communities' struggle with the academic, economic and political elites preserving the status quo. In the Italian RKC social world, infuential fgures such as Giordano Bruno and Galileo Galilei are often described as RKC predecessors whose aim is to overturn current conceptions of science and scientifc truths. It is worth noting that, unlike other prominent fgures in the history of science, these men failed to reach their goals during their lifetimes. It is this which makes them not only heroes but also martyrs. Tey died or were punished—both psychologically and otherwise—for bearing witness to a faith or an idea. Tis contributes to a key demarcation between the founding narratives of certain RKCs and mythic science: As I will show, the stories surrounding RKCs' best-known characters—particularly those of the 5BLs community—and what is portrayed as the fnal destiny of most of their members, tend to confate

<sup>2</sup> It is worth noting that mythical science also serves scientifc communities, keeping their social worlds tightly bound up. For example, rituals and celebrations such as annual prizes and global events in honor of history of science heroes are a clear demonstration of the relevance of these fgures to scientifc community self-identifcation, thereby contributing to the mythologising of great scientists.

epic with religious content, thereby hybridising the hero and martyrdom and religious prophet tropes.

### **4.3 The Martyrs of Refused Knowledge**

Like Bruno and Galilei, three of the mythical characters of the communities under scrutiny in this book have been rejected by the scientifc community as well as publicly and formally condemned by the scientifc and legal institutions by means of 'exemplary punishments'. Dr Robert O. Young, one of the key fgures in the alkaline water community and author of the 'pH Miracle' series of books, was convicted of several crimes relating to practicing medicine without a license and widely discredited in traditional media. Andrew Wakefeld—a key Pro Vax Choice community fgure globally famous for his theory regarding the link between autism and MPR vaccinations—has been repeatedly attacked in magazines, newspapers and TV shows and was struck of the medical registers in both the UK and the US. In addition, Dr Ryke Geerd Hamer, the founder of the German New Medicine movement based on the 5BLs, lost his license to practice medicine in several European countries, was jailed in Germany and served a prison term in France for fraud and unlicensed medical practice. From the RKC perspective, all these public and formal punishments go hand-in-hand with the sacrifce that goes along with protecting not only their discoveries but also their moral and ethical values and, in turn, the community they belong to and represent.

Furthermore, these stories go far beyond contingency. Public condemnation of what the scientifc community sees as quackery, or pseudo or mock science, can trigger a boomerang response by RKCs. Sometimes with the support of media and political infuencers, such communities (Bory et al., 2022) generate brand new content and materials—such as petitions, documentaries and counterfactual documentations—to debunk the legal and scientifc proofs which discredit their founders and martyrs. Occasionally, RKC martyrs promote and distribute new materials regarding their unjust persecution, as in the case of the documentary *Vaxxed—From Cover-Up to Catastrophe*, produced and directed by Andrew Wakefeld in 2016 to demonstrate the accuracy of his research on the relationship between vaccines and autism, which circulated widely on social media platforms and is still a 'must-see' for the Pro Vax Choice community in Italy and abroad.3 Tis chain reaction between exemplary punishments and the production of counterfactual evidence underlies the construction of martyr fgures like Wakefeld.

However, martyrs are not necessarily transnational fgures. Tey can also emerge in local or national contexts. All the fgures mentioned above are reference models or founding fathers of RKCs in the West. However, in addition to internationally recognised men such as Wakefeld, Young and Hamer, RKCs also have local and context-specifc leaders who occasionally perform the same roles as mainstream international fgures. Maurizio Martucci, one of the leading fgures of the Italian Stop 5G scene, is a clear example of a leader who also acts as spiritual guide. Martucci's struggle against 5G in Italy is, in fact, not only political but also has a strong spiritual connotation which sees technocracy as contrary to mother nature's rules and inner dynamics. Tus, there is nothing accidental about the fact that, in his bio, Martucci describes himself as leader of Alleanza Italiana Stop 5G, and also a holistic discipline and age-old tradition enthusiast who practices Kundalini Yoga combined with an interest in the spiritual path taken by native peoples in symbiosis with nature. […] He is the founder of the natural information website OasiSana (AT: Healthy Oasis).4,5

Other Italian communities, such as Pro Vax Choice, together with a series of political and leaders generally labelled populist, rely on certain exemplary cases or genealogical anecdotes from the past. Some of these stories have made vaccination hesitancy history in the Italian context. An example of this is the story of the Tremante family, a major vaccination controversy, which made Italian news headlines from the 1970s onwards. After the death of his frst child in 1971, Giorgio Tremante lost two more

<sup>3</sup>Te sequel to *Vaxxed*, *Vaxxed 2*, was directed by Robert Kennedy Jr, the son of another US political history's martyrs and well known for his anti-vaccination beliefs and promotional campaigns worldwide.

<sup>4</sup>https://www.terranuovalibri.it/autore/maurizio-martucci-182514.html (accessed 6 October 2022). For an overview of Martucci's role, see Simone Tosoni's chapter in this book.

<sup>5</sup>From now on, all text excerpts from Italian blogs and websites, and in-depth interviews are translated by the author.

children, and another remained paraplegic, because of the adverse efects of mandatory vaccinations.6 After 14 years of legal battles, Tremante received state compensation for his children's deaths but no compensation for the damage, for which he fled an appeal at the European Court of Justice which is still awaiting trial. Tis exemplary story of loss, sufering and legal battles eventually led to the foundation of Comilva, one of Italy's most active associations against mandatory vaccinations.

If the Tremante case is specifc to the Pro Vax Choice community, occasionally martyrs succeed in crossing the RKC boundaries into other RKCs, constituting temporary symbols in a common struggle for one social world (centred on various forms of refused knowledge) as opposed to another (usually led by the academic and scientifc élites). For example, during the COVID-19 pandemic, Italian doctor Giuseppe de Donno promoted an alternative cure based on the transfusion of plasma from healed to ill patients. De Donno argued that this would cost much less than other forms of treatment and would allow nation-states to remain independent of the oligopoly of pharmaceutic companies. Eventually this 'plasma-based cure' was rejected by the scientifc community on the grounds that there was no empirical proof or statistical data indicating that it worked (RECOVERY Collaborative Group, 2021). Concurrently, a few RKCs, such as the Pro Vax Choice community, began promoting the plasma cure as the 'people's cure for the people' as opposed to the vaccines, which were simply flling Big Pharma's pockets. Te plasma cure became a miracle artefact amplifying the centrality and public aura of its discoverer. In narrative terms, the miracle cure-persecuted scientist combination eventually spawned a new martyr. In fact, a few months after the public rejection of his fndings, De Donno committed suicide in his apartment. Shortly before his death his profle had been censored by social media platforms such as Facebook and he had been sidelined by the Italian scientifc and medical communities. Beginning on the day after his suicide, De Donno was hailed as a martyr by various communities, and became the human embodiment of the public value of the

<sup>6</sup>On his website, named 'Holocaust caused by vaccination practices' and displaying the dates of his children's deaths, Tremante has published all the articles and parliamentary questions regarding his legal case and other vaccine-related legal issues. See: http://www.tremante.it/ (accessed 6 October 2022).

sacred/miraculous artefact. De Donno's suicide was described on RKC social media as suspicious with some users suggesting that he had probably been assassinated by the scientifc/political élite to 'eliminate' a potential enemy. De Donno's sacrifce ultimately made him a symbol for numerous RKCs of the struggle for 'truth' against the power of the scientifc and political establishment.7 It should be noted that not all RKCs reacted in the same way to this episode. Te 5BLs community, for example, did not endorse the cures proposed by De Donno, but honoured his lonely fght against the 'system', while other communities agreed on the presumed evidence for the efcacy of the 'plasma-based cure'. Like De Donno, notwithstanding the diversity in their epistemic backgrounds, all the characters associated with RKCs—such as Hamer, Wakefeld, Young and many others—are fghting together in the front line of a shared struggle against scientifc elites. It should be noted that, unlike global martyrs such as Wakefeld, the stories such those of Tremante and De Donno are 'common man' stories of people heroically fghting for their rights, generating a mythical aura that is as powerful as other more common martyrdom stories.

#### **4.4 In the Name of the Prophet: The Ryke Geerd Hamer Archetype and the Birth of the Five Biological Laws Community**

In the RKC social world, certain myths have taken on such importance that they resemble the foundational myths which have long characterised human history and have occasionally equated scientifc myth with sacred myth in a hybrid part-scientifc-genius-part-prophet system. Tis is the case of Hamer and the fve biological laws. Of the numerous founding narratives of the Italian RKCs, the story of the discovery of the 5 Biological Laws (5BLs) is probably the most archetypal and fascinating. All the

<sup>7</sup>False prophets emerged during the pandemic as well. An example is Pasquale Bacco, one of the doctors who led the campaign against COVID vaccinations in 2020 and then changed his mind in 2021, withdrawing all his previous statements and making himself a 'common enemy' for several RKCs.

founding narrative traits and tropes listed thus far confate in the mythical fgure of German doctor Ryke Geerd Hamer, founder of German New Medicine (GNM), a blend of scientifc epic and spiritual implications, combining the story of a great scientist with the life of a prophet.8 Scientifc myth narrative tropes such as the eureka moment and scientists' fght for public acknowledgement of their discoveries are there in Hamer's life story, together with certain key life-of-the-prophets tropes. To summarise the stages in the prophet's journey, four tropes will be analysed in this section: revelation, conversion, persecution and exile, and the fght of the prophet and his followers against 'false prophets'.

#### **4.4.1 Revelation**

In 1978, while on vacation in Corsica, Ryke Geerd Hamer's 19-year-old son Dirk was shot in the leg by Vittorio Emanuele di Savoia, the former Italian crown prince. Dirk Hamer eventually died, and his father was later diagnosed with testicular cancer, which was operated on. Following these episodes, Hamer dreamt of his son, who guided him to the discovery that cancer is caused by sudden trauma leading to biological confict. In 1981, Hamer elaborated a theory according to which all diseases are caused by biological conficts and only profound understanding of the origin of the disease and, thus, of the confict itself can bring healing. He called this process the Dirk-Hamer-Syndrome (DHS) in homage to his son, thereby baptising the Five Biological Laws (5BLs). Hamer credits his son's appearance in his dreams for his discovery of the 5BLs. On one hand, Dirk's appearance in his father's dreams can be seen as a form of hierophany (Eliade, 1963)—i.e. a manifestation of the sacred. Te hierophany of Dirk Hamer partially fts with other anecdotes like the

<sup>8</sup>Te scientist/prophet dichotomy has already been examined in rhetorical and historical studies (Lessl, 2011; Walsh, 2013). For example, in her book *Scientists as Prophets* (2013), Lynda Walsh points to the prophetic role of contemporary scientists, analysing the scientifc rhetoric used. According to Walsh, contemporary 'great' scientists tend to not only forecast the future of society to strengthen their scientifc paradigms and discoveries but also to disseminate their personal views on political and societal issues. Unlike Walsh's contribution, the scientist/prophet parallel used in this chapter focuses more on the religious features and narrative tropes surrounding the stories and prophets and thus not only on their role as 'oracles' (Walsh, 2013, pp. 160-161), which is mainly based on their claims to foresee the future.

annunciation of Christ to Mary by Archangel Gabriel or the fnding of the Tablets of Stone in the Moses story. However, unlike these examples, Dirk did not reveal everything about the natural laws to his father, but provided his father with a series of clues and scientifc paths to it, for example,

this [the 5BLs] will cause a revolution in medicine. You can publish it in my name. But you will have to do more research. You haven't understood everything, you are missing two important things. (Post on Facebook from Hamer's testament, published on 17 March 2022)

According to this story, Dirk's revelation of the laws was not selfexplanatory. As a scientist Geerd Hamer had to follow his son's advice and study, research and prove the validity of the laws. Tis revelation story had a great impact on the 5BLs community. On one hand, Hamer was not the creator of the laws, but rather the scientist who translated the laws provided by Dirk for the people. In Geerd Hamer's words,

my Dirk deserves credit for not only initiating the knowledge of cancer correlations through his death, but also inducing it after his death and passing it on to me. (ibidem)

Te character of the son Dirk is essential to the 5BLs community, since he was both the frst source and the depositary, it might be said, of the 5BLs copyright. It is no accident that his picture is everywhere on GNM followers' social media profles and several magazines and books on GNM display Dirk's picture on their covers. However, if Dirk is the 5BLs saint, Ryke Geerd Hamer is the medium capable of conveying his word and simultaneously the scientist required to test and disseminate the laws and make them understandable and verifable worldwide.

#### **4.4.2 Conversion and Persecution**

Ryke Geerd Hamer's background was in theology and medicine. It is no accident that religious and scientifc reasoning and wordings are often used side-by-side in his writings. After the 5BLs discovery/revelation, Hamer took another important step along the path taken by many prophets: conversion to a new medicine and rejection of orthodox medicine and the elitist organisation of which Hamer himself was part. In fact, Hamer's conversion to German New Medicine went hand in hand with bitter criticism of medical practices and protocols and also of the medical establishment's organisations and infrastructures, such as hospitals and psychiatric facilities. Such criticisms were juxtaposed to a spiritual and evangelical mission: to help the weakest, poorest and most unfortunate victims of a cruel and dehumanised medical system. For example, in his account of a visit to a psychiatric hospital, Hamer argued that what I saw there was dreadful and horrifc. Patients, including young people with schizophrenia, who had dreams and hopes like you and I, were sitting in a closed facility like animals in a cage. Nobody knew what diseases these unfortunate people really had. Since that time, I had the strong desire to help those poorest of the poor. I believe that I have succeeded. (Hamer, 1987, p. 3)

Hamer's mission and conversion is consistent with those of other prominent fgures in the history of prophets. Tink of the story of Siddhartha, born into a wealthy family as a prince but moved by the world's sufering to give up his wealth for a life of poverty and help people fnd the true path to spiritual balance. Similarly, Hamer gave up his wealthy and authoritative role in orthodox medicine to help those in need. But, once again, this religious conversion confates with a radical change in scientifc practice, leading Hamer to a new vision regarding the role of technology in medical practice. Notably, Hamer's redemption from orthodox medicine went hand in hand with a shift from a hypertechnological job to a medical practice that excluded most medical artefacts and technologies. Te founding narrative recounts that before his conversion to 5BLs, Hamer was famous for patenting and selling innovative surgical instruments. Once redeemed from cold allopathic medicine, he was to use medical instruments—for example, X-ray machines—only to demonstrate the validity of his theories, while rejecting and condemning most of orthodox medicine's technological and pharmacological applications.9 Tis paradigm shift led Hamer to condemn medical practices such as chemotherapy on the grounds that they interfere with the natural progression of diseases. Tis rejection of technocratic medicine resonates in the discussions and posts of the 5BLs community, both orthodox and more fexible. For the 5BLs community, on top of various criticisms of vaccines, chemotherapy and other specifc technologies, the entire spectrum of allopathic medicine is also to be condemned:

Te average man continues to throw down pills for high blood pressure, blood sugar, cholesterol, prostate, and a variety of other reasons, without having any knowledge of the substances and their real 'usefulness', out of sheer confdence. And he continues to undergo often humiliating and invasive examinations, performed with increasingly cold and sophisticated machinery, out of sheer confdence. (AT Blog post by 5BLs expert, 20 June 2020)

Te conversion to 5BLs and rejection of the 'cold and sophisticated machinery' specifc to orthodox medicine was followed by a long series of trips and experiences through which Hamer evangelised his medicine, triggering a powerful reaction from the scientifc community which, according to the narrative, began persecuting him all over Europe:

In Chambéry and other places there were people coming from Spain and from Italy, you could see the queue of patients on three foors: and then he was convicted of illegal practice of medicine, you know? I witnessed all this process, and I saw how nobody listened to him. Eventually, they tried to kill him: he has a bullet hole in the windshield of the car. Tey tried to intern and lock him in an asylum. And, so, in short, my belief was at that time that Hamer was slandered, also because he had a view of the whole scientifc world that was appealing to his fndings, saying that they were Jewish Masonic lodges. (Interview with 5BLs expert)

Te persecution of Hamer, like those of religious prophets such as Christ or Jeremiah, turned into a series of ofcial and exemplary

<sup>9</sup> In particular, German New Medicine is against chemotherapy as a cure for cancer and also condemns the use of various forms of analgesics (particularly morphine) because they interfere with mental processes and are dangerous to patients' health.

condemnations. Hamer was jailed, colleagues from various countries criticised and publicly condemned his earlier work and he was disbarred from the medical profession and attacked by the mainstream media, especially in Italy. Te boomerang efect of this multipronged attack is that today, according to orthodox GNM followers, medical experts should follow Hamer, despite the risks involved:

From the outside, one practically expects that the system to which one belongs by duty, and with which one does not interact, must at some point implode. Hamerian doctors must ask to be disbarred and get out of the system to be honest with themselves. (Blog post by 5BLs expert 20 June 2020)

Furthermore, Hamer's conversion, subsequent persecution and consequent pain and sufering make the scientist/prophet extremely 'human', suggesting that anyone, not only scientists and doctors, can change their minds about health and medicine—irrespective of their age—and embrace the 'truth' revealed by the biological laws.

#### **4.4.3 Exile, Death and Commemoration**

Certain prophets' narratives end with a death penalty. When Hamer was persecuted, some members of the 5BLs community even went as far as to hope for such an end. Again, recalling the life of Galileo, one member of the community claimed

Even Galileo was targeted for his discoveries and yet it is still the earth that revolves around the sun. If we want to get to the juice, indeed, at the moment of the squeeze we discover that it is still 'love that moves the sun and other stars'. Why don't they just kill him and end this for good? I think the power that would create a martyr of this magnitude is truly infnite. (Posted by 5BLs member on Facebook group 12 December 2016)

However, Hamer was never killed. Te last part of his biography led him to another prophet trope, his lonely exile in Norway to take refuge against all the trials, journalists and other potential persecution from the European scientifc establishment. Soon, Hamer's home in exile became a place of pilgrimage and the followers of German New Medicine attempted on various occasions to reach out to the prophet, meet him and listen to his truth-speaking voice live. It is no accident that Hamer interviews during his exile, some of which are still available on YouTube, have become key social media content shared by the members of the 5BLs community. Even today, the followers of German New Medicine frequently discuss, re-post and comment not only on Hamer's medical and scientifc thought but also his incredible ability to foretell the future, as with the dangerous and elitist project that eventually led to the pandemic vaccination campaign.

Te scientist/prophet in exile must be met, touched and listened to by his followers, and this is exactly what three young members of the 5BLs community did when they embarked on a long trip to Hamer's house in Norway the following manner:

We are three friends, three colleagues, three scholars who have decided to draw from the source, the fundamental, the essential substrate, the energy behind the discovery. […] Te target is Norway, the target is a doctor, or rather, Te doctor. I'm talking about Dr Hamer himself. [….] I want to give this diary a magical and mystical note, as this journey has been and will be, magical and mystical. We are so grateful to Dr Hamer that despite the complexity of the situation we will pay visit to him without knowing if he will open the door. But we will meet him, despite all the obstacles ahead, we are too determined. (From the diary *A Discovery Journey to the Source*, published on 5BLs Facebook groups)

Te last mass pilgrimage to Hamer took place in July 2017. On 2 July Hamer died of a stroke and recordings of his funeral on 14 July 2017 show hundreds of people attending a magnifcent event whose ritual solemnity and sacredness were enhanced with fags, choruses and testimony. After his death, Hamer becameboth GNM and the wider 5BLs community prophet and martyr. Every year, on 2 July, members of the 5BLs community share Hamer's picture on social media accompanied by the words 'Tank you Dr Hamer',10 and prayers and comments on their

<sup>10</sup>*Tank you, Dr Hamer* is also the title of the most widespread and prominent Italian book about GNM.

founder's greatness, goodness and profound kindness and humanity. Once again, in this ritual, the prophetic and mythic science narratives confate, as users' posts like the one below show:

Ryke Geerd Hamer (Mettmann, 17 May 1935–Sandeford, 2 July 2017) Man, Doctor, Genius, Martyr. (Posted 2 July 2021 by 5BLs expert on a Facebook group)

Tis moment of commemoration has a twofold meaning. On one hand, the community congregated around its founder, commemorating him for his gift of the 5BLs. At the same time, as Marcel Mauss argued in his anthropology classic (Mauss, 1990), every gift brings with it the donor's identity and his human values. Commemorating Hamer's death serves both to give the community cohesion—it is a ritual of communitarian reunion—and facilitate the sharing of values and attitudes and a shared struggle against the status quo. Like Hamer, 5BLs followers have a mission to accomplish—to assert their right as human beings to return to nature, follow its rules and oppose elitist control over health and medicine practices by a small number of cold actors and technocratic institutions.11

#### **4.4.4 Schism and False Prophets**

Prophets' biographies generally discuss their struggles against those who attempt to mimic and overturn their teachings. False prophets are presented as impostors or traitors who distort the 'word of God', as in Catholicism's apocryphal gospels. Tis kind of struggle for the truth is also visible in certain scientifc controversies, particularly when scientists and inventors dispute their origins and empirical proof.

In certain cases, false prophets fnd their own followers who launch a new version of the cult, thereby provoking a schism that splinters the original community. Within the 5BLs framework, false prophets are guilty of three major sins: misinterpreting or mixing the laws with other

<sup>11</sup>On this topic, see Stefano Crabu's chapter in this book.

false claims; portraying themselves as new prophets, usually overshadowing the true prophet Hamer; enriching themselves with the sacred word and misappropriating the biological laws from their collective ownership.

Towards the end of Hamer's life and after his death, a number of adepts decided to establish their own schools and training programmes, triggering an internecine struggle within the community. Hamer himself disavowed a few of his pupils, particularly in Italy.12 For example, in a letter to the members of the frst Italian 5BLs association named *Associazione Leggi Biologiche Applicate–Association of Applied Biological Laws* (ALBA) Hamer wrote,

I want to have nothing more to do with the superiors of ALBA, who have betrayed me, the German New Medicine, and deceived our patients (by 'superior order'?). […] I consequently formally forbid ALBA executives, to defraud me and all patients in my name and under the banner of the German New Medicine. (Letter from Hamer to the members of ALBA, 16 March 2007)

Although the movement's founder/prophet has never been questioned as such by any associations or training schools promoting the biological laws, three sub-groups relying on Hamer's work but with various degrees of fexibility can be distinguished. Te frst, and probably the most apocryphal, of these, and also the largest, is made up of people who rely only partially on the 5BLs—for example, adding and mixing the contents of GNM to allopathic medicine or to other approaches such as Chinese traditional medicine and homeopathy, among others. For these people, Hamer is one of many charismatic fgures who have contributed to individuals' emancipation from a monolithic and elitist vision of medicine and science.

Te second can be labelled progressive and is led by a series of 5BLs experts, most of whom have a research background in felds such as psychology and alternative and/or complementary medicines. Tis group, like most scientifc communities, aims to promote Hamer's discoveries and combine the 5BLs with other approaches, whilst retaining 5BLs as

<sup>12</sup>Hamer condemned one of his pupils in particular. Te dissemination of false prophets here confates with another recurring trope of religious stories: the betrayer, the Judas.

the cornerstone of medicine. Some of these fgures—many of whom have renamed GNM, thus hiding Hamer's name from their promotional campaigns—claim that GNM, like science, needs to be explored further. Some of the progressives have been bitterly criticised by other followers of GNM, mainly on the basis of accusations that they are attempting not only to appropriate 5BLs but also to make money from it:

Tere are people who have based their wealth, their income, on the use of this information. (Sighs) Which is ok, it's not wrong to want to make money or create an economy around this thing: however, what I regret is not seeing anything given away. Nothing freely donated. Tat is, the fve laws are a heritage of nature, they are not a copyright. Tey are not a patent! Tey are not patentable. It's like wanting to patent gravitation, you know? I mean gravitation is gravitation. Whether you are walking or fying, there is always gravitation. And it's not patentable, so why do you keep it for yourself? All for yourself? I don't understand that. (Interview with 5BLs expert)

Te third group can be labelled the orthodox group—that is, those who trust and follow only Hamer's frst-hand writings and lessons. Tis group generally criticises false prophets, particularly those who attempt to 'update' the 'already perfect' GNM:

Tere are two methods of spreading the GNM: in one we talk about the 5BLs, we never go against ofcial medicine (on the contrary, the GNM integrates...), the 5BLs (which have no therapy) are mixed with the most disparate alternative 'therapies', and very little (practically never) is said about Hamer. And in this modality, the new gurus are created, those who 'know', who 'save you', and who are protected by the adepts in a stupid and childish way […]. It is the same modality of the patient-doctor relationship in ofcial medicine. In the second method, we talk about Hamer's medicine, we talk about the propaganda, the lies, and the idiocy of the ofcial medicine; we do not mix the GNM with anything else because there is no need for that, because the SBS programs are already a therapy—the therapy of nature. (Blog posted by 5BLs expert on 20 September 2020)

#### **4 Us and Them: Martyrs, Prophets and Mythic Narratives…**

Tis dispute between adepts and false prophets notwithstanding, the prophet and great scientist trope that is the cornerstone of GNM contributes to the very survival of this approach. Te Hamer founding narrative ensures that the 5BLs are always discussed, reinterpreted and, in certain cases, questioned and updated. In this regard, rather than generating a paradigmatic shift in the 5BLs community the schism led only to a partial evolution in its genealogy, thereby widening its potential audience into new types of followers.

As one of its experts has argued, the most important schism in the 5BLs community in Italy notwithstanding, the biological laws will never disappear:

Five minutes after the advent of all the greats of the earth, the most disparate truth-claiming groups were formed within the very core of innovative thinking. Tus Christ's birth was followed by that of the Catholics, Protestants, Calvinists, Orthodox, Lutherans, Mormons […]: all claiming to have the best God. […] So, we have a God for Muslims, for Orientals, etc. […] So it happens a little bit to all currents of thought. [...] As far as Hamer's fndings are concerned, I feel particularly calm, because biological laws do not give a damn about internal divisions and, since they are laws that have always existed and will always exist, they fortunately continue to apply as natural processes. (Trupiano, 2015, p. 284)

Overall, the truth of the 5BLs will always prevail in any forms of schism. Just like scientifc and religious myths, scientifc truth and holy truth go hand in hand. Te comparison with religious systems here is not coincidental: like God, the laws of nature survive any kind of 'truthclaiming groups', and false prophets cannot even scratch the surface of the truth.

#### **4.5 Between Us and Them**

Te archetypal Hamer story, and the melding of mythic science with prophets, is a clear example of the contribution a founding narrative can make to the creation, stability and preservation of an RKC over time. In this narrative, ingenuity, spirituality, epics and sacredness are mixed up together, following tropes regarding scientifc achievements alongside religious contents, rituals and internecine confict between the community's followers. On one hand, the power of such narratives lies in their shareability and familiarity, in other words, its set of recurring patterns, metaphors and fgures which constitute the building blocks of epics and religious texts worldwide. On the other hand, additional intricacy, complexity and concurrent forms of resistance within the 5BLs community to external epistemologies go hand in hand with the quality, recognisability and solidity of its founding narrative regarding its scientist/prophet Hamer.

Simultaneously, other communities such as Stop 5G, Alkaline Water and the Pro Vax Choice community also have their own founding narratives and martyrs. However, these communities often recall their founding fathers, martyrs and key anecdotes in a more functional manner, depending on the struggle under way or the enemy targeted, as in the last pandemic. Unlike transitory martyrs (e.g. De Donno during the pandemic), founding fathers are heroes and, simultaneously, martyrs representing a common mission to revolutionise not only science, health and medicine but also politics and culture. In this regard, the 'us' and 'them' dichotomy is summed up by these characters and their biographical journeys, thereby also leveraging another recurring prophetic narrative trope—millennialism. Notably, founding fathers (and very rarely mothers) and legendary scientists—such as Galileo Galilei and Giordano Bruno—often do not achieve their goals. Rather, they anticipate and contribute to a long-term achievement that can be either a full 'evangelisation' of society or, more often in RKCs, an apocalypse, a fnal judgement, in which those who 'know' or have learned 'the truth' will be saved. Whilst the words they use may vary contemporary RKC prophets and leaders recursively share a common philosophy: 'As far as we know, our community will survive, while they will eventually pay or perish'.13 In a

<sup>13</sup>Tis is a rhetoric characteristic not only of scientifc and religious beliefs but also of conspiracy theories and populist narratives. In a sense, in RKCs as well as in science-related populism, the religious discourse revolving around the fnal judgement, according to which 'those without sin will be saved', intersects the resistance rhetoric found in political movements (e.g. partisan movements) and according to which the fnal liberation of the people will depend not only on an 'act of faith' but also on a daily struggle for survival or, in other words, on a constant act of 'resistance'. Te fact that the social world of refused knowledge communities appears to subsume religious beliefs and political views into a single system of thought and belonging certainly requires further analysis and empirical research, from both sociological and historical perspectives.

motivational post at the beginning of the pandemic, the most prominent Italian magazine on the 5BLs claimed:

Te crisis is not now, the crisis will not be later: think about it, the crisis started long before this phenomenon. We recognised it but we always gritted our teeth to adapt and survive and not only in economic terms. Before our life was survival not life, now our life is an opportunity to start living again, to change how our world works. Not with manifestations but by individually raising our vibrations. If we allow ourselves to transcend the manifestation of current reality and keep our new reality intentions for the future alive, on a daily basis, we have the ability and all the necessary talent to create it. Te 'how' will present itself at the right time along our way with new opportunities, new ideas and new actions which have never been tried before. If you are listening to this, it is because you have already set of on your personal path, also thanks to the fve biological laws. Now there is nothing you can do because you have already acquired the tools, and earned them with the sweat of your brow. (Posted on 5BLs Magazine on 18 April 2020)

As this quote shows, the pandemic amplifed millennialism's discursive presence as one of the most recurring tropes in RKCs and several religions worldwide (Lynch et al., 2021; Murru, 2022). Notably, the 'us and them' dichotomy is also a demarcation between those who believe in the inner eschatology of their scientifc, but also cultural and religious, paradigms and those who will be condemned for following the 'false prophets' of dogmatic science. Founding narratives, the martyrdom stories, prophecies of a future in which orthodox science will be overturned by a pure and human-centred science—these are all part of a common action plan designed to separate RKCs of from the rest of society, not only in scientifc but also in shared belief terms and, in turn, of political views and everyday behaviours. As Claude Levi-Strauss argued in his seminal study (2013), myths are designed to resolve the inner contradictions and uncertainties of a specifc society or community. Overall, the understanding of the values and the exquisitely political meanings of RKC mythical systems will not merely serve to bring down the refused knowledge 'house of cards' (i.e. revealing its 'false' myths). Such understanding is rather essential to shed light on what the house is built on, and also to explore the vulnerabilities, inadequacies, contradictions and communicative biases of contemporary science and of scientifc narratives.

### **References**


Mauss, M. (1990). *Te gift*. Routledge.


**Open Access** Tis chapter is licensed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/ by/4.0/), which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence and indicate if changes were made.

Te images or other third party material in this chapter are included in the chapter's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the chapter's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder.

# **5**

# **From Scientifc to Syncretic Patchwork Storytelling: The Discursive Ecosystem of Italian Stop 5G Refused Knowledge Communities**

**Simone Tosoni**

#### **5.1 Introduction**

Te relationship between RKCs as social worlds (Clarke & Star 2007; see also Chap. 2 by Federico Neresini) and the knowledge they profess must be conceived as inherently co-constitutive. On one hand, sharing knowledge refused by the scientifc community constitutes RKCs' 'principal afliative mechanism', 'both making and marking [their] boundaries' (Clarke & Star, 2007, p. 115). It is sharing a common system of beliefs which prompts individuals to join these groups, keeps RKCs together and potentially accords members specifc expertise-based status. On the other hand, this knowledge is not unchanging and pre-existing members' participation, but both pre-condition and outcome of their participation

e-mail: simone.tosoni@unicatt.it

S. Tosoni (\*)

Department of Communication and Performing Arts, Università Cattolica del Sacro Cuore, Milano, Italy

<sup>©</sup> Te Author(s) 2024 **109**

F. Neresini et al. (eds.), *Manufacturing Refused Knowledge in the Age of Epistemic Pluralism*, https://doi.org/10.1007/978-981-99-7188-6\_5

itself: it is continuously produced and reproduced by RKCs themselves through ongoing discoursivisation practices performed in a range of 'situations' across a plurality of sites (Clarke, 2005). Tis is the case, for example, of live meetings or social media debates to which members contribute with new information or by contesting certain assumptions in favour of others. It is also the case of the production of articles, books, videos and other cultural artefacts in which RKCs' shared knowledge achieves a higher level of systematisation, becoming, however temporarily, more stable.

It is precisely to account for this co-constitutive relationship that the social worlds framework (SWF) moves beyond 'concepts of discourse analysis stemming from European phenomenology and critical theory' (Clarke & Star, 2007, p. 116) to address the discursive production situation (Strübing, 2019) where the social world and its discourses are simultaneously shaped. To this end, it adopts an ecological approach that conceives of the situatedness of social discourse production in an relational way, that is, as a form of interaction between a plurality of social actors and nonhuman actants (such as social platforms' algorithms, for example) participating to the same social world, and to the wider arena revolving around the same 'matter of concern' (Latour, 2004). Notably,

All the elements empirically found in the situation of interest […] are understood as co-constitutive—they help to make each other up and together constitute the situation as a whole [:] things have meaning only in relation to the situations in which they are found or occur. (Clarke, 2019, p. 15)

In what follows, I will adopt this perspective to address the discursive knowledge-production situations enacted by the Italian Stop 5G RKC throughout its history. Tis case study is, in fact, especially revealing regarding the 'situatedness and contingency, history and fuidity, and commitment and change' (Clarke & Star, 2007, p. 113) of the coconstitutive relationship between RKCs and their shared knowledge. In particular, I will focus on the strategies adopted by the Stop 5G RKC to mark the boundaries of its discursive practices in order to stabilise its shared knowledge, and the radical changes that took place in these practices during the COVID-19 pandemic. I will describe this turn—which is currently risking breaking this RKC up—in terms of a shift from a 'scientifc' to a 'syncretic' patchwork storytelling approach, the former based on selecting sources regarded as scientifc, the latter combining diverse and sometimes conficting discursive sources, such as scientifc knowledge, folklore, new age spirituality and conspiracy theories.

It is, however, impossible to address this turn without paying systematic attention to the role played by media—and social media in particular—in the concrete discursive knowledge production situation analysed here. As we will see, a signifcant part of RKC discursive practices are media-related (Couldry, 2004, 2012) and became exclusively so during the COVID-19 pandemic lockdown. Before we proceed further then, we need to adapt a methodological framework from media studies to support the ecological approach advocated by the SWF when dealing with media-related practices.

#### **5.2 A Media Ecosystem Approach to RKC Discursive Shared Belief Production**

Over the last two decades, an ecological methodological sensibility has emerged in various subfelds of research within media studies (such as journalism studies, media archaeology and media storytelling studies), prompting scholars to move beyond approaches centred on a single medium and an overly rigid compartmentalisation of their research interests into user-, content- and technology-related issues (Anderson, 2016; Fuller, 2005; Pescatore, 2018; Tafel, 2019; Zuckerman, 2021). However diferently—and sometimes inconsistently—understood by the various authors, the concepts of (media/news/narrative) ecology and (media/ news/narrative) ecosystems have been leveraged to acknowledge that media phenomena can only be tackled in a relational way, as an interplay of heterogeneous and mutually constitutive entities (Tosoni & Tarantino, 2013): symbolic and material, human and nonhuman, pragmatic and structural, and social, economic and technological.

Tis *rhizomatic* approach to media ecology, which should not be confused with the *environmental* media ecology tradition stemming from the work of Marshal McLuhan and Neil Postman (Anderson, 2016), developed independently of the SWF. Nonetheless, a number of shared theoretical inspirations—especially the work of Gilles Deleuze and Felix Guattari (2004, or. ed. 1980) and actor–network theory—mean that rhizomatic media ecology and SWF converge on some key methodological points. Sy Tafel (2019), in particular, has underlined the centrality of Deleuzian concepts of *rhizome*, describing the non-linearity of interrelationships between heterogeneous elements, and *assemblage* as:

A way of describing the process by which collective entities of humans, nonhuman biological organisms and nonliving actors (such as technologies) are composed. … Tinking in terms of assemblages means going beyond isolated objects-in-themselves, instead studying the confgurative relationships between entities. … Tings do not exist alone, or as connected individuals, but as entangled, intra-active assemblages. (p. 36)

For the purposes of this chapter, one of the most inspiring applications of this rhizomatic ecological approach regards narrative ecosystems. Addressing the specifcities of recent media products, Guglielmo Pescatore (2018) has described the way that the new forms of storytelling adopted by these are not only transmedia but also made up of modular elements that cannot be regarded as 'text-objects since their only narrative coherence constraints are local'1 and 'cannot be attributed to the strong intentionality of a subject governing the whole system' but are rather designed around an initial 'core set' of 'locations, characters, users and the properties deriving from them' (p. 28). Tis core set constitutes the common ground for the interaction of a plurality of human and nonhuman actors and actants (i.e. authors, audiences, platforms and media formats) that translate it into a plurality of narrative orientations in reciprocal synergy or competition. It is thus not possible to make sense of these products by means of content or narrative analysis alone. What is required is a focus on the dynamic structuring of the environment promoting the interaction between actors and actants from which they stem. One of the most fascinating examples discussed by Pescatore (2018) are two experiments in *swarming storytelling* by Kai Pata (2011) in which users equipped with

<sup>1</sup>All translations of other languages are the author's.

computers, cameras and smartphones were asked to produce bits of a story consisting of a picture and some comments. Tese collective endeavours, in which all participants acted as producers and audiences, generated hypertextual forms of storytelling characterised by the absence of a central text or 'grand master':

Tere are several access points to diferent stories. Users enter from the point that defnes their perspective. Perspectives are individual, but diferent shared perspectives create niches, clusters of narratives and plots that generate greater engagement and are more commented upon, shared and fed by other writing processes. Te system is polycentric, inhabited by narratives and [clusters] of stories 'scattered' across the ecosystem. (Bisoni et al., 2013, p. 20)

Clare Birchall and Peter Knight (2023) described the structure of the conspiracy theories that took shape and circulated on the Internet, especially during the COVID-19 pandemic and including those encapsulating refused knowledge about 5G, exactly in this way. Tis structure is described as a galaxy of modular bits of storytelling and pieces of knowledge lacking a grand master and accessible from several entry points—in which users were invited to 'do [their] own research' and 'fll in the dots' generating clusters of narratives of various degrees of persistence and intensity. Tis galaxy began to engage the Italian Stop 5G RKC and its arena during the COVID-19 pandemic. As Birchall and Knight (2023) underlined, 'ecology provides a potentially productive way of thinking about the complex interaction between the content, the users, the technological infrastructure and the social dynamics of the diferent digital platforms' (p. 53). From this perspective, the digital sphere can be seen as a vast interconnected discursive ecosystem (IDE), an environment in which diferent discourses and narratives can coexist and interact in multiple ways in their transmedia circulation, sometimes colliding and competing, sometimes adapting to each other and sometimes reassembling into new and broader ones.

Yet, the authors warn that the ecological metaphor 'is not free of its own unspoken assumptions' (p. 53). Within the current rhizomatic strand of research in media studies in particular, the metaphor tends to drive scholars to overlook the concrete discursive production situations generating temporary, however stabilised, assemblages, in favour of a broad overview of the functioning of the ecosystem as a whole. In journalism studies, for example, Chris Anderson (2016) observes that these studies often take

'a big data' approach to analysing a large corpus of digital material. Fewer of them study journalistic difusion in a more granular way, and almost none of these studies draw upon ethnographic or other forms of qualitative research in order to look at how these rhizomatic processes play out on the ground. (p. 420)

By contrast, the SWF always examines the system from one or more situated perspectives, focusing on 'the situation of production [as well as on] how discourses are produced, by whom, with what resources, and under what conditions' (Clarke 2005: 155), on the '[negotiations of] discourses in social relationships/interaction', and on the '[production of] identities and subjectivities through discourse' (Clarke, 2005, p. 155). We will therefore address the discursive knowledge production practices of the Stop 5G social world within the digital sphere as an interconnected discursive ecosystem ethnographically, with an analytical focus on the situatedness of their enactment.

### **5.3 Contesting 5G Deployment: From Scientifc to Syncretic Patchwork Storytelling**

As we have seen, in an ecological perspective, the structuring of RKCs' social worlds and of their wider arena, their forms of discursive production, their media-related practices and, ultimately, their shared beliefs are tightly intertwined: this means that transformation of one of these elements implies transformation in all the others too. From this perspective four phases in the Italian Stop 5G RKC can be distinguished:


As we saw above, this can also be read as a movement from a 'scientifc' to a 'syncretic' patchwork storytelling approach in the RKC's knowledge production practices. I will now move onto reconstructing the main stages in this turn by means of the tenets of the (media) ecological approach outlined above.

#### **5.3.1 RKC as a Network of Independent Scientists: the Adoption of a Scientifc Patchwork Storytelling Strategy (2017–2018)**

In the frst phase of challenge to 5G rollout, the Stop 5G RKC was largely made up of international 'independent' researcher groups (as the RKC defnes scientists not funded by the industry) pursuing a strategy already used to challenge 3G and 4G technologies (Soneryd, 2007). On the basis of a growing number of articles published in peer-reviewed journals, they resorted to public appeals published in scientifc journals and on the web to raise awareness in the institutions and public opinion on the nonthermal efects of non-ionising electromagnetic radiation. Tese efects were (and are) dismissed as scientifcally unfounded by organisations such as the International Commission on Non-Ionizing Radiation Protection (ICNIRP), an NGO tasked with defning safety guidelines for exposure to electromagnetic felds and recognised by the World Health Organisation. Tese guidelines–which consider the thermal efects alone– have been accepted by the EU and the US and set the limit at 61 V/m (Italy applies a more restrictive limit of 6 V/m).

In 2015, for example, several 'scientists engaged in the study of the biological and health efects of non-ionising electromagnetic felds' published an international appeal related to technologies preceding 5G. Tis urged 'the United Nations (UN) and all member states in the world to encourage the World Health Organization (WHO) to exert strong leadership in fostering the development of more protective electromagnetic felds (EMF) guidelines'2 than those put forward by the ICNIRP, which was accused of ignoring all scientifc literature on 'long-term exposure and low-intensity efects'. Two years later, in September 2017, Professors Rainer Nyberg and Lennart Hardell quoted this appeal in their *Te 5G Appeal*, 3 asking the EU to apply 'a moratorium on the roll-out of 5G'. Te appeal argued that the existence of low-intensity, long-term non-thermal efects had been proven by a vast amount of scientifc literature, and predicted that these efects would be even more severe with 5G. Moreover, it explicitly accused the ICNIRP of a confict of interest in its refusal to consider this body of knowledge, quoting an article written by Lennart Hardell (2017) himself, which called the ICNIRP an 'industry loyal NGO' in support of this. Te appeal received two replies in that same year (Hardell & Nyberg, 2020) from the European Directorate-General of Health and Food Safety and from the European Commission which dismissed the low-intensity non-thermal efect hypothesis and rejected the confict of interest allegations.4

<sup>2</sup> Scientists call for Protection from Non-Ionizing Electromagnetic Field Exposure, available at https://emfscientist.org/index.php/emf-scientist-appeal

<sup>3</sup>Te 5G Appeal, available at http://www.5gappeal.eu/appeal

<sup>4</sup>Te letter from the Directorate-General quotes 'the Ombudsman conclusion in case 208/2015/ PD5 concerning conficts of interests in a Commission expert group on electromagnetic felds is that there was no maladministration by the European Commission' (http://www.5gappeal.eu/wpcontent/uploads/2018/06/reply\_ryan.pdf).

#### **5 From Scientifc to Syncretic Patchwork Storytelling…**

Tat same year a number of Italian health- and science-related associations adopted this appeal strategy to put pressure on national and local government. Tis was especially the case of ISDE (International Society of Doctors for Environment) Italia which invoked the precautionary principle to demand a moratorium on 5G experimentation and an international appeal from ISDE International followed in 2018.

For their scientifc claims, these and other appeals relied on literature reviews and meta-analyses produced by independent researchers throughout the history of the challenge to mobile communication infrastructure deployment. A case in point is the BioInitiative report (BIR),5 published online for the frst time in 2007, reissued in extended form in 2013 and updated several times since then. Tis vast literature review constitutes one of the main references used by the RKC and its appeals. Te report has been strongly criticised by several independent and governmental research groups for a plurality of reasons, however, ranging from poor selection criteria concerning the studies included in the review to conclusions that are only partially grounded in the review itself. On the occasion of the publication of the 2013 edition, for example, a critical assessment by *Science-Based Medicine*, an online editorial project on scientifc controversies owned and operated by the *New England Skeptical Society* (an independent, non-proft organisation) reported several scientifc faws in the report and considered it an evident case of confrmation bias, or 'cherry-picking':

Te authors of the BIR commit exactly this error with EMF bioefects studies, by speculating at length about possible implications of studies reporting efects of EMF while saying little about studies that failed to fnd efects. Rather than taking a 'weight-of-evidence approach' to put all the studies together in a coherent picture, most authors simply listed numbers of studies reporting efects (of whatever nature at whatever exposure level) in comparison with those that found none. (*Foster & Trottier,* 2013)

**<sup>117</sup>**

<sup>5</sup>https://bioinitiative.org/

Tis discursive strategy—that I defne 'scientifc patchwork storytelling'—consists of the RKC assembling its shared knowledge by collecting disparate 'scientifc' sources all in support of the existence of non-thermal efects, where 'scientifc' is understood as 'published in peer-reviewed journals', regardless of their reputation within the scientifc community or of the reception of the individual articles in the existing literature. Moreover, these sources—dealing with diferent electromagnetic wave frequencies and reporting various types of biological efects—are neither assembled into a coherent picture nor consider studies reporting conficting results, even solely for the purposes of deconstructing them.

In this strategy, conficting studies are dealt with asymmetrically; to make sense of them, the RKC moves onto diferent epistemic ground and mobilises a narrative centred on the conficts of interest of adversarial scientists and groups of experts. In particular, the newest studies are dismissed as uproar deliberately produced through industry-funded research to generate a state of uncertainty that fosters the survival of the status quo—and facilitates the deployment of the new 5G infrastructure. Historicisation is a key discursive strategy here: rather than engaging in deconstructing and criticising opposing studies, the RKC deploys historical comparison to make sense of the present situation. Te slow recognition of tobacco's carcinogenicity, in particular, is used as a probatory example of industries' ability to deliberately manufacture scientifc uncertainty (Bero, 2005; Brandt, 2012) and considered proof of the plausibility of an alleged ongoing disinformation campaign within the scientifc community.

Te adoption of this discursive strategy by the RKC must be viewed in the light of its objectives in the broader 5G deployment arena: these groups of scientists aim to draw institutional and public attention to what is regarded as a deliberately ignored body of scientifc evidence. Yet scientifc patchwork storytelling, together with its complementary delegitimising narrative, played a pivotal role in shaping RKC knowledge in the subsequent phase as well, when activists entered the scene and engaged in 5G opposition at the local and municipal levels.

#### **5.3.2 The Activist Phase: Guarding the Borders of Scientifc Patchwork Storytelling (2018–2020)**

In September 2018 Arthur Firstenberg launched the international Stop 5G on Earth and in Space appeal,6 to the 'UN, WHO, EU, Council of Europe and governments of all nations' and signed by a number of 'scientists, doctors, environmental organizations and citizens'. Te appeal adopted the strategy employed by the RKC in its previous phase, with the issue of the deployment of the new communicative infrastructure being strictly framed as a health and environmental problem, and the appeal backed by a body of peer-reviewed articles proving the existence of nonthermal EMF efects. It accused public and private institutions of conficts of interest in refusing to take these into account in policymaking. Tis time, however, the appeal did not come from groups of independent scientists but from civil society: Firstenberg is an American activist afected by electromagnetic hypersensitivity, a condition triggered by EMF that is not recognised by WHO. Tis new central importance of the activist scene added extra complexity to the RKC's social world and marked a new phase in the opposition to 5G deployment.

An activist scene began to take shape in Italy this same year, when the 5G issue gained public visibility and was covered by legacy media, a process fostered by a plurality of events. Te frst of these was a sustained efort to promote public awareness by national associations and groups, such as Alleanza Italiana Stop 5G (AIS5G),7 an 'informal committee and a non-partisan network … standing up for the … precautionary principle' founded in 2018. Tis same year, to reach a wider audience than its blog and Facebook page followers, the committee launched a crowdfunding campaign and bought a national newspaper page in *Il Fatto Quotidiano* and some advertising space on the leftist radio station Radio Popolare. It also launched an awareness-raising campaign in various cities involved in 5G experimentation which relied on mobile billboards mounted on trucks, a communication strategy also used by no-vax groups and Pro

<sup>6</sup> International Appeal Stop 5G on Earth and in Space. Available at https://www.5gspaceappeal.org/ the-appeal/

<sup>7</sup>https://www.alleanzaitalianastop5g.it/442967936.html

Vita associations. Te committee's main promotor and spokesperson was (and still is) journalist Maurizio Martucci (see Chap. 4 by Paolo Bory), 'author of many investigative and crime books on soccer [who was now working] on health and environment, rare conditions and alternative medicine',8 and had just published a self-defence manual for electrosensitive people (Martucci, 2018), and later, in 2020 published *#Stop5G* (Martucci, 2020), a bitterly critical investigative book on 5G to which we will return. Tose named by the committee's blog as afliated and/or cooperating with the network were ISDE Italia, Associazione Nazionale Piccoli Comuni di Italia (Italian Association of Mayors of Small Towns), several infuencers who have, elsewhere, been defned as 'catalysts of scientifc dissent'9 (Bory et al., 2023) and Bologna's Istituto Ramazzini, a non-proft social cooperative operating in the feld of independent research on cancer and medical science popularisation.

Tis institute was also at the heart of a second key event. Until 2018, the knowledge assembled by the RKC through scientifc patchwork storytelling lacked a signifcant piece in its claims to public credibility. Although it included epidemiological and in vitro experimental evidence, and hypotheses on the biological plausibility of EMF efects, it lacked in vivo studies on a signifcant number of animals. Tis gap was flled by the fndings of two studies published by independent researchers: one from the American National Toxicology Program (National Toxicology Program, 2018) and one from Istituto Ramazzini (Falcioni et al., 2018). Both reported the insurgence of specifc kinds of cancers in mice and rats exposed to (non-5G) electromagnetic felds. Although part of the scientifc community cast doubt on the soundness of these studies and the signifcance of their results (including ICNIRP10), this research gained attention from legacy media, including national public and private TV channels. A case in point is the journalistic TV programme *Report*, screened on national public channel RAI3, which broadcast an alarming

<sup>8</sup>From his blog on *Il Fatto Quotidiano* (https://www.ilfattoquotidiano.it/blog/mmartucci/).

<sup>9</sup> 'A public infuencer who does not belong to the scientifc community and contributes to the dissemination of science-related populist narratives within a grassroots ecosystem of resistance to institutional science' (Bory et al., 2023, p. 1).

<sup>10</sup> See INCIRP (2018).

episode11 on the possible efects of 5G. Links to the episode were published on the AIS5G blog and Facebook page and in other RKC ecosystem 'owned spaces'12 (Penttinen & Ciuchita, 2022), becoming a reference point for many groups of activists who contributed to disseminating it.

Finally, from 2018 onwards, the attention of legacy media and the RKC was also captured by a series of public statements from European Union bodies such as the Scientifc Committee on Health, Environmental and Emerging Risks (SCHEER) which included 5G its list of 14 'emerging issues to bring to the attention of the Commission service' because 'the lack of clear evidence to inform the development of exposure guidelines to 5G technology [left] open the possibility of unintended biological consequences' (SCHEER, 2018, p. 14)13; the document '5G Deployment: State of Play in Europe, USA and Asia' (2019) commissioned by the European Parliament Committee on Industry, Research, and Energy stating that 'signifcant concern [was] emerging over the possible impact on health and safety arising from potentially much higher exposure to radiofrequency electromagnetic radiation arising from 5G'; and the 2021 report *Health Impact of 5G*, 14 commissioned to Dr Belpoggi by the European Parliament's Panel for the Future of Science and Technology (STOA), that raised several concerns. Tese were supplemented by several court rulings reported with considerable emphasis by

<sup>11</sup>*Onda su Onda*, Rai3 26/11/2018.

<sup>12</sup>From our ethnographic observation, digital spaces through which members of RKCs interact online can be classifed in *owned spaces* (Penttinen & Ciuchita, 2022) under their direct control such as—in our case—the constellation of Stop 5G public local Facebook groups and the related private WhatsApp groups; *spaces of resonance* that are perceived as sympathetic, such as the WhatsApp and Telegram groups of the same name (Te Walk of Change), whose focus is not exclusively 5G but which are bitterly critical of the scientifc community; and *spaces of confrontation* that, on the contrary, are perceived as hostile, such as the online spaces of tech magazines like *Wired*. Moreover, we defne *media territory* as the ensemble of media employed by the RKC to perform specifc practices (Tosoni & Ciancia, 2017, p. 44; Tosoni & Turrini, forthcoming) such as online and ofine activism practices. As we will see, the RKC's discursive strategies, tones and rhetoric vary in these diferent spaces.

<sup>13</sup>Later on the committee produced more reassuring statements on EMF. See, for example, https:// health.ec.europa.eu/system/fles/2020-04/citizens\_emf\_en\_0.pdf: 'there are no evident adverse health efects if exposure remains below the levels set by current standards'. Yet, some research results contradicting this were reported.

<sup>14</sup>Available at https://www.europarl.europa.eu/RegData/etudes/STUD/2021/690012/EPRS\_ STU(2021)690012\_EN.pdf.

the local and national press which recognised some types of tumours occurring in cases of heavy work-related use of mobile phones as occupational accidents. Notably, in the frst of these (2012), the Corte di Cassazione of Brescia was called upon to decide upon litigation between a manager and INAIL (the Italian occupational health institute). Te court dealt with the contradictory scientifc literature presented and decided to accord greater credit to studies produced by 'independent researchers', ofcially validating the delegitimising narrative that complemented the Stop 5G scientifc patchwork storytelling strategy.15

Te momentum of this rise in the visibility of the potential 5G risks led to the creation of two Italian groups on Facebook by the end of 2018, both of which adopted the title of Firstenberg's appeal: Stop 5G Italia and Stop Sperimentazione 5G. Te two groups soon amassed over 10,000 members each. Other groups followed, on both Facebook and WhatsApp, (e.g. No Elettrosmog) sometimes translocally addressing diferent categories of people (such as the Facebook group Mamme Stop 5G, for mothers). Concomitantly, a vast constellation of small local groups appeared in all the main Italian cities, all using the Stop 5G label. Most of these groups adopted a similar media territory16 for their activist practices centred around a Facebook group (e.g. Stop 5G Milano) for communication among members and sympathisers and a more restricted interactional space on WhatsApp for discussions and coordination between activists. Tese local groups organised their activities autonomously but were loosely and informally coordinated in national online groups, where they could also get in contact with national associations.

Local activist groups, national associations and committees adopted a twofold, synergic strategy. On one hand they engaged in awarenessraising campaigns consisting mostly of public conferences, leafeting, demonstrations and Facebook activities. In 2019 dozens of public conferences were held all over Italy organised not only by national associations and committees but also by local groups with the participation of one or more members of national associations and at which institutional

<sup>15</sup>Full sentence in https://www.bollettinoadapt.it/wp-content/uploads/2017/05/20121015-snciv@ sL0@a2012@n17438@tS.clean\_.pdf

<sup>16</sup> See note 12.

representatives were frequently invited to participate as speakers or attendees. Tese events were launched and advertised on the RKC's online owned spaces and reposted in its spaces of resonance. Tey were also often documented (sometimes via live streaming) to produce excerpts later published and circulated on the Internet.

On the other hand, while pursuing their strategy of appeals at the national and European levels, national associations and groups backed up local groups in pressuring local administrations and mayors directly, or indirectly through the mediation of local politicians (Gerli, 2021). In this phase, mayors' public health responsibilities meant that they were authorised to suspend 5G adoption. Tis battle was fought through on- and ofine signature collections, meetings with the authorities, and, when needed, legal means. Here, the knowledge produced by scientifc patchwork storytelling played a key role since the point was to convince mayors that there were sufcient scientifc grounds to justify the precautionary principle. Local groups informally worked together to gain the scientifc and legal expertise needed to generate efective dialogue with the authorities. Tey also received support from national groups. In this phase the main knowledge authorities for the RKC as a whole were, in fact, researchers at Istituto Ramazzini (with some local groups even organising visits to laboratories) and the AIE, both of whom helped local groups frame their instances and public discourse frmly within the limits of scientifc patchwork storytelling. AIE president Dr Paolo Orio, for example, not only gave many public talks on EMFs but he also constantly monitored scientifc databases for new peer-reviewed studies confrming the efects of non-ionising radiation. Tese articles were then posted, together with comments on their signifcance, on the AIE's owned space, in national and translocal Stop 5G online groups and other spaces of resonance, where they were intercepted, collected and reposted by local activists in their groups. At a local level, they were often collected and archived in external repositories like Google Drive as lists of links or a collection of PDF fles that were then circulated among other groups, together with legal documentation and models of the letters to be written to mayors. Tese repositories and lists were also used to socialise new members to the knowledge shared by the RKC or to contradict the opposition in online discussions in spaces of confrontation. What was actually at stake here was a fully fedged creation of a canon of symbolic resources assembled through scientifc patchwork storytelling that came to summarise and stabilise the knowledge shared by the RKC as a whole.

Tis twofold strategy proved highly successful. In an article dated 16 July 2020,17 *Wired Italia* revealed that 431 mayors and local administrations (the number would grow to 600 in total out of around 8000 Italian municipalities) had halted the deployment of 5G on their territories. Whilst the pandemic crisis sped up this process, an in-depth study by Paolo Gerli (2021) on 5G municipal bans has shown that these moratoria were not related to COVID disinformation (as is often argued by legacy media) but were rather the result of painstaking perseverance by civil society, activists and local politicians that had begun long before. A signifcant role in this work was played by the capacity of a heterogeneous and decentralised network of activists to open a dialogue with public institutions, keeping its discourse within the limits of scientifc patchwork storytelling and avoiding science-related populist stances (Mede & Schafer, 2020) or forms of conspiracism that would have delegitimised their demands.

Tis was the result of eforts to demarcate the boundaries of RKC discursive production made by its knowledge authorities and by national and local Facebook groups' administrators acting as gatekeepers. Administrators proved capable not only of defending their online spaces from unwanted intrusion by trolls and comments explicitly advocating acts of sabotage or vandalism against antennas, but also from posts on topics not strictly related to 5G (from chemical trails to vaccines) and from overly controversial sources of knowledge. Te regulations of the Stop Sperimentazione 5G group, for example, explicitly stated:

Here quarrelling, rudeness, praising violence and inciting crime is strictly forbidden. Since our ideas vary, arguments on politics or topics other than [5G], such as vaccines, chemical trails and conspiracies, are also strictly forbidden. Before publishing an article, you are requested to verify the trustworthiness of its source. Do not publish articles or videos written or flmed by amateurs, or news that has not yet been verifed; this will make

<sup>17</sup>https://www.wired.it/internet/tlc/2020/07/16/5g-comuni-italia-mappa/

us look like fat-earther nut jobs to be mocked and easily dismissed. Tis is something that our negligence must not allow to happen. We must always be credible and well-informed. If you are not sure about some information, consult scientifc data and laws before beginning a dialogue with institutions or scientifcally trained people—we want them on our side.

Consequently, although several conspiracy theories regarding 5G were already circulating on the Italian web in 2018 and 2019 (for example, on the use of 5G technologies in a project for mind control called Monarch),18 they did not permeate the guarded borders of the Stop 5G social world.

Yet, there are two signifcant exceptions to this form of boundary work in this phase, both strictly centred on scientifc patchwork storytelling and framing the deployment of 5G as a health- and environment-related issue, and both of which, as we will see, played a key role during the pandemic phases. Te frst was an alternative narrative promoted, in particular, by Martucci's AIS5G in its owned spaces (and then reposted in several spaces of resonance). In this narrative, 5G was framed not (only) as a health risk but as the linchpin in an already ongoing transhumanist transformation of society that promoted pervasive mediated communication and (allegedly) 5G-related technologies, like the Internet of Tings, AI and virtual reality, as means of exploitation and social control. Indirectly rebutting the public praise by tech companies and the institutions of the social gains associated with 5G in what has been called a technological drama (Butot & van Zoonen, 2022), this narrative adopted a cultural criticism approach warning against the erosion of social ties, culture, critical thinking and, therefore, freedom that such a transhumanist turn implied. Tis narrative, that began to resonate in local groups' private and owned spaces, was fully developed in Martucci's (2020) book *#Stop5G* and, as will be seen, rose to prominence during the pandemic crisis.

Te second exception was not a fully fedged narrative, but rather an epistemological stance generating a plurality of sub-narratives. It comprised a collective efort to mobilise the (scientifc-patchworked) knowledge of the RKC to interpret phenomena observed daily by activists; for

<sup>18</sup>https://disinformazione.it/2019/07/30/5g-monarch-preludio-al-nuovo-ordine-mentale/

example, attributing personally experienced health symptoms and conditions to EMF, searching the urban landscape for new 5G antennas to monitor the deployment process (after learning to recognise them through pictures shared online), but also associating tree cutting to the scientifcally based notion that trees are barriers to 5G millimetre waves. Tis led to formal demands for an end to tree cutting to local institutions and appeals. Tis epistemological stance broke the immediate connection between the RKC's shared knowledge and scientifc sources prescribed by scientifc patchwork storytelling and promoted by scientists as knowledge authorities: during a public conference held in Milan in 2019, for example, one of the convenors projected a video downloaded from the Internet showing dead birds, attributing the event to the activation of a 5G antenna.

As we will see, this epistemological stance, in synergy with the delegitimising narrative that complemented scientifc patchwork storytelling, opened the door to a populist and, not infrequently, conspiratorial turn during the pandemic crisis.

#### **5.3.3 Enter the Virus (February–April 2020)**

Te pandemic crisis marked a radical transformation in the structure of the RKC and its broader arena, media ecosystem and discursive practices. From a communicative point of view, these months registered a crackdown against the circulation of controversial COVID-19-related knowledge in the media. In April 2020, for example, AGCOM, the Italian Communications Regulatory Authority, began applying severe restrictions and cancelled several controversial TV programmes and channels. Concomitantly, all the main platforms enforced stricter content moderation policies, including demonetisation and deplatformisation. In this scenario, the virus was a key actant in the defnition of the RKC discursive production situation and within its ecosystem and the primary work of local activist groups in physical spaces, such as conferences, weekly leafeting and signature collection, was suddenly suspended. Tis weakened the relevance of locally owned communication spaces used for coordination in favour of national and translocal online groups enjoying a wider (and quickly increasing) audience: these groups soon became the centre of the activists' media territories.

COVID-19 took the limelight in discursive terms as well: participants were soon engaged in never-ending collective discussions seeking to make sense of the new situation. Encouraged by insistent (fake) news about the concurrence of 5G adoption in Wuhan and the outbreak of the epidemic (news that was also reposted by Gunter Pauli,19 economic advisor to the then-Italian President of the Council Giuseppe Conte, in a tweet that was interpreted by the activist groups as an authoritative confrmation), activists saw the ongoing pandemic crisis from the vantage point of their shared knowledge on EMF, adopting the epistemological stance already well established in the previous phase. Several authors have described speculation on the correlation between 5G and COVID-19 in conspiracy theory terms (Bruns et al., 2020; Gagliardone et al., 2021; Meese et al., 2020). Yet, this seems to apply only in cases promoting the nonexistence of the virus and its use by the authorities as a cover story to hide what was actually an upsurge in a severe 5G-induced electromagnetic condition, as was claimed by alternative medicine practitioner and antivaxer Tomas Cowan in a video that was widely circulated on Facebook before being removed. Tis hypothesis, whilst present in activists' discussions, was rejected as antiscientifc by the majority of the RKC's members, who tended to explain the situation in terms of a population left more vulnerable to infection due to the efects of 5G electromagnetic radiation on the immune system.

Tis hypothesis was compatible with the canon of scientifc literature collected by the RKC,20 yet it was not directly addressed and supported by it. In this way, the epistemic line drawn by scientifc patchwork storytelling began to be crossed, and this increased when the groups' participants started to fnd new knowledge authorities elsewhere as a basis for their claims. Tis was the case for catalysts of scientifc dissent such as Claudio Messora (whose ofcial channel ByoBlu was frst demonetised

<sup>19</sup> 'Science needs to demonstrate & explain cause & efect. However science frst observes correlations: phenomena that are apparently associated. Let's apply science logic. Which was the 1st city in the world blanketed in 5G? Wuhan! Which is the 1st European 5G Region? Northern Italy' (3/22/2020). See https://twitter.com/MyBlueEconomy/status/1241732814959149067

<sup>20</sup> See, for example, Johansson (2009).

and then shut down by YouTube in March 2021) and Rudolf Steiner, founder of anthroposophy and main reference point for Dr Cowan. In particular, Steiner was credited for attributing huge epidemic outbreaks to the progressive electrifcation of the planet. Meanwhile, group admins were struggling to exert their authority as gatekeepers and keeping discussions strictly focused on 5G- and EMF-related issues, resorting to public reprimands and content deletion, partly due to fears that a platform increasingly perceived as hostile might sanction or remove their online spaces.

#### **5.3.4 The Populist Turn and the Adoption of Syncretic Patchwork Storytelling (The Remainder of 2020)**

Te most radical changes in the RKC's discursive knowledge construction practices were initiated precisely by an abrupt turnaround in online groups moderation. In late March-early April, the unrest caused by strict governmental virus containment policies, a shared perception of increasing control in legacy media and social platforms, and social alarm triggered by news of experimentation on a new class of SARS-CoV-2 vaccines convinced the admins of a growing number of local, translocal and national groups to cease fltering non-5G-related contents and even share this content themselves. When asked about a shift that led many groups to—in some cases, completely—shift their focus from 5G, activists answered that there were now more pressing issues at hand or that the 5G battle had to be seen as part of a much broader clash with technocapitalism.

While the narratives characterising the previous phase persisted, and scientifc literature on the dangers of 5G was still posted, a plurality of themes coming from diferent sources was now being shared in the RKC's owned spaces in an attempt to make sense of a rapidly evolving situation. Tese themes ranged from new age spirituality and the benefcial efects of 7.83 Hz vibration (disrupted by EMF) to the relationship between facemasks and blood acidifcation (which exacerbated the dangerous efects of EMF and 5G), sociological warnings about the radicalisation of surveillance capitalism, dystopias revolving around supposedly 5G-enabled technologies like AI, virtual statements about the DNAaltering proprieties of new vaccines and considerations on the artifcial nature of the virus.

Reports of ongoing censorship, content deletion and deplatformisation were also a signifcant component of the mix, leading users to adopt measures to circumvent algorithmic content moderation based on assumptions, or 'folk theories' (DeVito et al., 2017; Moran et al., 2022; Myers West, 2018), on how such algorithms work. Several groups were renamed, for example, to avoid automatic detection, and potentially troublesome keywords were encrypted (the word Vax was replaced by the word Cax, e.g.). Te media territories of various groups were reconfgured through migration from WhatsApp to Telegram, which was considered 'freer' and more 'secure' (migration from Facebook to platforms like VK was often discussed but never really put in place). Interestingly, users also started to save cultural artefacts (like Dr Cowan's videos) in external shared repositories like Google Drive to preserve them from deletion and share them with other users. Tis practice ultimately assembled a new eclectic canon of heterogeneous resources that replaced the old scientifc literature-based canon.

Te transformation of the discursive practices of a large part of the RKC was more radical, however, and cannot be described simply in terms of this new thematic eclecticism. Especially in bigger groups, collective discussion of posts shared was replaced with what might be called 'fow communication': users started constantly reposting links, videos, memes and other cultural artefacts from a heterogeneous variety of sources, selecting contents that captured their attention in spaces of resonance proposed to them by platform algorithms, or received directly from their contacts, including on WhatsApp. Content was now simply juxtaposed to other content, and links were not infrequently reposted and crossposted many times by diferent, or even the same, users. Tis form of syncretic patchwork storytelling assumed forms closely resembling transmedia swarming storytelling, as described in Sect. 5.2. Rather than a collectively negotiated 'grand master' (see above, Sect. 5.2), groups hosted a considerable number of modular micronarratives, pieces of information, speculations and hypotheses, each constituting an 'access point … to diferent stories' that users themselves assembled following links and fnding connections, with 'shared perspectives [creating] clusters of narratives and plots that [generated] more engagement and [were] more commented [on]' (Bisoni et al., 2013, p. 20).

Some narrative clusters in this vast interconnected discursive ecosystem replicated conspiracy theories, 5G-related and otherwise, as they have already been described by recent literature focusing on the pandemic crisis (Birchall & Knight, 2023; Fuchs, 2021), featuring depopulation plans, Big Pharma, the inoculation of 5G-operated microchips for mass control (or, alternatively, for population reduction), for example, and other hidden malevolent plans hatched by hidden powers. Other conspiracy theories, by contrast, were fltered out by RKC's members' 'perspectives'. QAnon-related speculations, for example, never really took of within this communicative fow while they circulated in other Italian ecosystems, even encapsulating micronarratives on 5G (Murru, 2022).

Other narrative clusters, however, were associated with perspectives that leaned more towards scientifc and political populism than conspiracy theories. Tis was the case, in particular, of the cultural criticism approach against transhumanism promoted by Martucci's AIS5G, then coming to the fore. In this narrative, the economic elites, whose interests were naturally opposed to those of the common people, were acting with the complicity of the political health authorities to take advantage of the pandemic crisis and speed up the adoption of technologies leading to a future of radical exploitation, social engineering and erosion of freedom. Tis narrative became politically more radical, particularly after the government issued Decree-Law no. 78 of 16 July 2020, which deprived mayors of the power to suspend 5G adoption in their territories, initiating an institutional and legal battle with local government that is still going on. Backed by a signifcant part of the network of the 'catalysts of scientifc dissent' and the Stop 5G RKC, Martucci spent the months which followed on denouncing an ongoing 'electromagnetic coup d'etat' and urging 'the people' to mobilise. Elsewhere (Bory et al., 2023), we have described how the hegemony of this overarching populist narrative and the adoption of a syncretic approach fostered the confuence of a part of the Stop 5G activist movement (the one closer to AIS5G) into R2020, a new political entity made up of various RKCs connected via networks, and representing instances of this discontent.

Some of the groups that adopted the form of syncretic patchwork storytelling described above defnitively moved away from a focus on 5G and EMF, de facto leaving the RKC; this was the case, for example, of the Italian WhatsApp group No Elettrosmog, which now mainly discusses vaccines, the Ukrainian crisis (with a prevalently pro-Putin stance), and issues featured in legacy media as their main agenda setters. Other groups, such as Stop 5G Italia, slowly regained their focus, and others never adopted the new discursive practice, such as the AIE online group, which stuck to scientifc patchwork storytelling and its treatment of the 5G theme as a health and environmental issue. In so doing it regained its prepandemic knowledge authority role within the RKC, leading many groups back to their focus.

#### **5.4 Conclusion**

Te purpose of this chapter has been to shed light on the co-constitutive relationship between RKCs as social worlds and their shared knowledge. To this end, I adopted an ecological approach to address the situatedness of the Stop 5G RKC discursive shared knowledge construction practices and the role played by the media, both legacy and digital, in these same practices. Tis required taking a non-media-centric approach to media (Morley, 2009) which sought to consider all the main heterogeneous elements tangled up in the RKC's discursive situations, thereby contributing to shaping its shared knowledge. Moreover, the adoption of a diachronic perspective was crucial to the attempt to clarify the process by which these can be de-stabilised and re-stabilised in new confgurations with the inclusion of new entities, regarding which my focus was on the role played by SARS-CoV-2.

Te case study in this chapter allows two orders of observation to be made. Te frst of these concerns the close interaction between the RKC's socio-structural and socio-symbolic levels. On one hand, specifc organisational forms have proved highly signifcant to the enabling of specifc shared knowledge production practices—contributing in this way to shaping the knowledge shared by the RKC. For example, in its activist phase—when a growing number of laypeople entered the social world, drawn in by the growing visibility of the EMF issue in legacy media—the Stop 5G RKC was able to retain a stable discursive scientifc patchwork storytelling practice, on the strength of an especially efcient organisational structure in both discursive gatekeeping and new members socialisation terms. As we have seen, this structure consisted of a network of informal local activist groups and a few national associations—many of which were under the leadership of those with scientifc backgrounds or expertise, such as ISDE or AIE—mediating collaboration with independent scientists. On the other hand, transformations at the socio-symbolic level proved highly signifcant in fostering some forms of structural reorganisation. During the pandemic crisis, for example, the adoption of an unprecedented scientifc populism in the 5G strategy and a syncretic approach to knowledge production paved the way for the convergence of a large part of the RKC in the broader political entity, R2020. At the same time, this also threatened to disrupt the RKC, causing several groups to lose their focus on 5G-related issues.

Te second order of observations regards the role played by the media, both legacy and social, in the heterogeneous entanglements of the situations of discursive production. Tis is still an understudied topic, as a large part of the literature on the mediated circulation of knowledge refused by the scientifc community focuses on the efects of users' exposure to fake scientifc news and scientifc misinformation (as these controversial pieces of information are more commonly and less symmetrically referred to within media studies) addressed using a behaviouralist 'powerful media efects' approach (Tosoni, 2021). As our case study shows, three main inextricably intertwined digital media roles can be identifed in this RKC's production and circulation of refused knowledge: its role as an interactional infrastructure, as a vast interconnected repository of contents and symbolic resources (IDE, interconnected discursive ecosystem), and as a fully fedged player in the RKC's arena.

Regarding the role of (digital) media as interactional infrastructure, it should be noted that the RKC assembles specifc and recurring media ensembles with which to perform its discursive practices (what we have defned as 'media territories'). For example, the media territories of local activist groups are structured in private WhatsApp groups and owned Facebook groups complementing ofine meetings by hosting shared knowledge production discursive practices. What is signifcant about this is not only the multi-sited (Marcus, 1995) nature of the RKC's discursive practices but also how a shift in these same discursive practices entails a reconfguration of their media territories, as the RKC's turn from scientifc to syncretic patchwork storytelling shows. Moreover, it can be observed that the RKC's members share a sort of 'symbolic map' of their media ecosystem, distinguishing their owned spaces into private and public, and non-owned spaces into friendly ('spaces of resonance') and hostile ('spaces of confrontation') and members' discursive practices may thus vary accordingly. We have seen, for example, how it was in private and resonance spaces that activists drew on the RKC's shared knowledge to make scientifcally unfounded interpretations of everyday phenomena heard about on the Internet, such as ascribing a substantial number of bird deaths and tree cutting to 5G adoption.

Regarding the role of the media as a vast interconnected repository of symbolic resources (IDE, interconnected discursive ecosystem), the RKC's members actively searched the Internet for cultural artefacts conveying these resources, and came into contact with them through re-posts by other users acting as grassroots intermediaries (Jenkins et al., 2013) or via the intermediation of platforms' algorithms. It should be noted, however, that the distinction between media as repositories and media as interactional infrastructure is not clear-cut. In particular, the RKC's members adapted their content production to the narratives of other players in the same arena, engaging them in a sort of mediated indirect interaction. Vivien Butot & Liesbet van Zoonen (2022), for example, drew on Bryan Pfafenberger's (1992) concept of 'technological drama' to describe the interplay between 5G discourses enacted by 'design constituencies' (e.g. the European Commission, tech companies and other public and private entities) and ''impact constituencies' who [organised] on Facebook to oppose … 5G' (Butot & van Zoonen 2022, p. 1). Tis drama was staged via 'news media as ambivalent intermediaries' and 'in front of audiences who [became] part of the scene' (p. 6). In our case study, we observed this form of indirect interaction during the pandemic crisis when the cultural critique approach to 5G opposition became dominant. Addressing the situatedness of the RKC's discursive production of shared beliefs, therefore, means considering the symbolic resources available to it, as well as their complex interaction.

Finally, the RKC's members viewed legacy media and social media platforms as fully fedged players in their arena, by and large with an adversarial role. In particular, in a reversal of the trend by which the Internet is represented as a free speech space (and juxtaposed to statecontrolled legacy media), mainstream platforms such as Facebook and YouTube began increasingly to be perceived as hostile after they tightened their content moderation policies during the pandemic crisis. Notably, these perceptions contributed to shaping the RKC's current discursive production practices (and therefore its shared knowledge), probably to a greater extent than the platforms' direct interventions—e.g. labelling some content as unverifed or deleting it outright. As several authors have noted (DeVito et al., 2017; Moran et al., 2022; Myers West, 2018), people engaging with controversial content drew upon their previous experiences and observations to develop folk theories on the functioning of moderation algorithms in the platforms they employed, adapting their online behaviour to circumvent gatekeeping. In our case study, we saw, for example, that during the pandemic members of the RKC archived cultural artefacts that they considered at risk of automatic cancellation in online repositories which eventually canonised some of the narratives assembled through syncretic patchwork storytelling.

#### **References**


*mutations: Gli ecosistemi narrativi nello scenario mediale contemporaneo. Spazi, modelli, usisociali* (pp. 11–26). Mucchi.


radiofrequency feld representative of a 1.8 GHz GSM base station environmental emission. *Environmental Research, 165*, 496–503.


**Open Access** Tis chapter is licensed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/ by/4.0/), which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence and indicate if changes were made.

Te images or other third party material in this chapter are included in the chapter's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the chapter's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder.

# **6**

# **Disentangling Discursive Spaces of Knowledge Refused by Science: An Analysis of the Epistemic Structures in the Narratives Repertoires on Health During the Covid-19 Pandemic**

**Ilenia Picardi, Luca Serafni, and Marco Serino**

### **6.1 Introduction**

Epistemic positioning matters in defning the social worlds that build knowledge claims. As Chap. 1 argued, the research project of which this study forms part labels its object of study *refused knowledge* (RK), taking into account the positioning of science, which situates RK claims outside the boundaries of knowledge corpora that it considers legitimate. Consistent with the symmetric perspective of STS, this chapter aims to understand how refused knowledge communities (RKCs) position science with respect to their knowledge claims, to comprehend if these social worlds refuse the science that denies them validity or adopt strategies designed to enrol science—i.e. scientifc knowledge's claims,

I. Picardi (\*) • L. Serafni • M. Serino

Department of Political Science, University of Napoli Federico II, Napoli, Italy e-mail: ilenia.picardi@unina.it

F. Neresini et al. (eds.), *Manufacturing Refused Knowledge in the Age of Epistemic Pluralism*, https://doi.org/10.1007/978-981-99-7188-6\_6

technoscientifc devices, scientists' institutions, scientists and scientifc papers. To this end, we will enquire into the meaning-making processes regarding health within social worlds made up of people who, within RKCs, work with shared objects to legitimise their knowledge claims. Te hypothesis of this work is that knowledge can be analysed as a discursive assemblage made up of both *knowledge claims* and *heterogeneous actors* enrolled to legitimise this knowledge. We have therefore enquired into the association processes via which RKCs enrol claims and actors *within their discursive universes* and, thus, the ways in which they build meanings and attribute credibility to knowledge about health. As we shall see, a particular kind of enrolment process concerns how science is recruited by RKCs in legitimising the knowledge they build.

Te methodology chosen is based on quantitative and qualitative procedures combined in a nested research design. More specifcally, ours is a narrative approach (Czarniawska, 2004) integrated with the methodological framework of social network analysis (SNA; Wasserman & Faust, 1994; Scott, 2000). Tis set of techniques allowed us to visualise and analyse the relational properties of knowledge assemblages shared by RKCs, thus uncovering the structures of discursive confgurations that build, maintain and legitimise these forms of knowledge. Finally, analysing the narrative repertoires shared in diferent discursive confgurations permitted us to identify the primary narrative structures within the RKCs' discursive universes.

Te analysis focuses on the online discourses shared in the Alkaline Water (AW) and Five Biological Laws (5BLs) RKCs from January 2020 to December 2021 during a time span characterised by the emergence of the Covid-19 pandemic and the management of the related health crisis. Health issues gained prominence during the pandemic not only for RKCs but also in society as a whole. Our interest in these social worlds was motivated by the fact that RKCs developed a corpus of knowledge on health and wellbeing which is refused by scientifc institutions, but without refusing institutional science. Tis peculiarity makes such RKCs of interest in the study of the ways in which they incorporate science into their discourses.

Tis chapter is organised as follows. Te next section focuses on concepts borrowed from the theory of social worlds and employed them in the network analysis performed in our study. Section 6.3 describes the methodology and empirical material used in this study. Tis section clarifes the use of SNA in the context of the theoretical framework of social worlds, considering the use of SNA in Science and Technology Studies (STS), which has been the subject of much debate. Section 6.4 focuses on describing the analysis and its main results. Finally, the last section focuses on discussion and conclusions.

#### **6.2 Analysing Spaces of Epistemic Enrolment Within RK Social Worlds**

To understand how, within their discourse universes, RKCs enrol diverse claims and actors to legitimise their knowledge, we will borrow a number of key concepts from the social worlds' perspective. According to Clarke and Star (2008), the social world framework focuses on meaning-making processes within groups of actors 'doing things together' (Becker, 1986) and working with shared objects. Here, the focus is not on the 'doing' but on the linguistic utterances as part of the discursive construction of such objects, which can also be pieces of knowledge and play a central role in our analysis. It is around these objects that knowledge claims are built and conveyed in these social worlds. Our main reference is thus to the defnition of social worlds as *universes of discourse* (Strauss, 1978), namely shared discursive spaces that are profoundly relational in nature, which prompted us to adopt a narrative approach (Czarniawska, 2004) to enquire into the most signifcant forms of narratives used by RKCs to legitimise and thus stabilise the knowledge they perceive as being refused by science and mainstream world views.

To identify the confgurations on which RK relies, we opted for an approach derived from the *sociology of associations* (Callon, 1984; Latour, 2005) designed to trace the connections between knowledge claims and heterogeneous actors enrolled within these discursive worlds to support those claims. Analysing knowledge as an assemblage of claims and actors underlines the profoundly relational nature of knowledge itself and understands the latter's sharing within a community as one of the main factors attributing it the status of knowledge, regardless of the truthfulness or falsity of its contents (Bloor, 1976).

*Claims of knowledge* are defned here as the cognitive elements considered true within a social world and constituting segments of its corpus of shared knowledge. Te *epistemic enrolment space* is the set of discursive structures that guide, focus and delimit RK credibility attribution processes by assembling and re-assembling epistemic, social and political structures. In the case studies considered here, epistemic enrolment space analysis focuses on the discursive texture built by RKCs' *entrepreneurs* (Clarke & Star, 2008), namely individuals, or groups of individuals, who are deeply committed to, and active in, promoting RK in online spaces within the social worlds observed.

In accordance with the social worlds' perspective, we will also examine the role played in these discursive universes by *implicated actor*s, i.e. 'actors silenced or only discursively present—constructed by others for their own purposes' (Clarke & Star, 2008, p. 119). As discursively constructed primarily by RKC entrepreneurs to sustain RK, implicated actors are neither actively involved in negotiating self-representation in social worlds nor considered for what they say, write and argue; yet they can play a determinant role in enrolment processes into forms of knowledge. Finally, we will consider how both human and non-human actors are mobilised in the making up of epistemic confgurations and thus we use the term *actors* to refer to both human and non-human actors.

Hence, within the epistemic enrolment space we will investigate knowledge claims concerning health as it is maintained by RKCs, along with the networks of enrolment and counter-enrolment (Callon & Law, 1982) built to afrm this knowledge. Te elements assembled in such networks were identifed via web-ethnography during our research to enable us to explore RKC narratives as proxies to the *re-assembling of the social* (Latour, 2005), i.e. as a way to grasp how the various narratives bring heterogeneous elements together and into meaningful wholes (Czarniawska, 2004). Te narratives constructed by RKC entrepreneurs contribute to sustaining wider *narrative structures* through which meanings and their relation to social worlds can be built and shared. Diverse sets of actors are enrolled into these narrative structures, to support and entangle the discourse universes deemed signifcant by RKCs. Moreover, in these discursive structures, our interest was identifying the objects (claims and actors) coexisting in the diverse structures making up the epistemic enrolment space and building narratives centred on a range of repertoires. Our analysis will focus on *boundary objects* (Star & Griesemer, 1989), nodes in the narrative structure network where various social worlds meet in arenas of mutual concern. Our interest in these objects was based on the key role they play within the translation processes (re) constructing meanings to meet the specifc needs or demands of the various social worlds involved (Star, 1989).

#### **6.3 Methodology and Data**

Our analysis used a mixed methods perspective by combining the narrative approach (Czarniawska, 2004), designed to identify the discursive structures of the social worlds, and SNA.1 Tis methodological strategy was chosen with a view to examining the relational structures at play in the enrolment of the various types of actors supporting RK claims within RKCs' online discursive spaces and the narrative structures that inform the epistemic enrolment space of these social worlds. Te stages in our analysis are shown in Fig. 6.1. As the entire data collection and analytical process dealt with qualitative data and prioritised the interpretation and analysis of texts and network graphs over formalisation, we consider our work to be concerned with qualitative networks (Bellotti, 2014; Hollstein, 2011).

In the frst step in this research, from January 2020 to December 2021, our research group conducted web-ethnography on AW and 5BLs RKCs' online spaces (blogs, Facebook pages and profles, YouTube channels and the like) (Chap. 1). Using content analysis tools (Lieblich et al., 1998), we analysed the diaries resulting from this web-ethnography and, through an iterative coding and recoding process, we identifed: (a) the health-related claims constituting the core of the corpus of refused

<sup>1</sup> 'Te tools of SNA are invaluable to a proper analysis of such worlds. Tey allow us to identify structures that would not otherwise be apparent and to measure important properties of those structures in a precise and reliable manner' (Crossley, 2010, p. 31).

**Fig. 6.1** Analytical process in each case study

knowledge;2 (b) the enrolled actors interacting in the discursive universes (including implicated actors); (c) the linkages between claims and enrolled actors.

<sup>2</sup>Each claim is constructed by elaborating from the diaries' content (including observer's notes, utterances, and audiovisual material) the corresponding discursive unit, whereas the actors are extracted by selecting those enrolled to sustain the claims within the discursive content as a whole.

#### **6 Disentangling Discursive Spaces of Knowledge Refused…**

Te three entity classes were translated into the elements constituting the two-mode networks discussed below. We also considered *mimicry practices* to be one of the strategies pursued by RKCs to give epistemic legitimacy to an RK corpus and depict it as an attribute of claim–actor linkages (see Chap. 1). Of the four enrolment strategies identifed by the project, we chose to focus only on mimicry because of its signifcance in RKCs' attempts to enrol in science. Performing mimicry strategies from the simplest reference (either textual or visual) to technoscientifc devices, e.g. a microscope or an oxidation-reduction potential (ORP) metre to more sophisticated biological elements and processes, e.g. extracellular pH, tumour micro-environment or T cell apoptosis—means borrowing science's constitutive 'marks' of scientifc authority, including scientifc institutions, scientists and scientifc papers. Te third step formalised the connections between claims and actors through two-mode networks, which proved to be useful in operationalising linkages between heterogeneous actors (Mützel, 2009) 3 and emerged as appropriate to the kind of relational structure we intended to analyse. In fact, in two-mode networks, ties are allowed only between nodes belonging to two distinct node sets, as is the case with claims (Set 1) connected to actors (Set 2). Tese two-mode networks permitted us to visually explore the way claims are connected to actors, and thus the way actors aggregate around narratives expressed by claims. Te analytical strategy we pursued therefore implied that actor–actor connections are mediated by the claims they jointly support whilst, conversely, claims are connected to each other insofar as they are sustained by the same enrolled actors—which is precisely one of the main features of two-mode (afliation) networks, i.e. their *duality* (Breiger, 1974).

Adopting Actor Network Teory's perspective (Latour, 2005) led us to consider the associations between these elements as *social* in that such networks constitute a representation of social worlds as assemblages of heterogeneous actors and claims at work in discursive enrolment. As far as actor heterogeneity is concerned, it is well known that two-mode afliation networks can help scholars produce 'heterogeneous maps', but do

<sup>3</sup> See Contractor et al. (2011) for an example of a two-mode, multi-relational human–technology network. In STS, two key examples of such studies are Cambrosio et al. (2004) and Callon (2006).

not allow distinctions between the nodes or ties comprised in a single 'mode', which is considered a limitation (Cambrosio et al., 2004; Mützel, 2009, p. 874, 878; Venturini et al., 2019, p. 515). Tere is no doubt that, in our analysis, heterogeneous associations coalesce into a single set of linkages—whilst paying attention to the diverse strategies pursued to sustain claims through actors' enrolment (see below)—but the diferences between types of actors are retained as a node attribute (see Sect. 6.4).

Our network graphs were drawn up using *Gephi 0.9.7* software which we also used to obtain network statistics. We made use of a *force-directed layout* named *ForceAtlas2* (Jacomy et al., 2014) to spatialise networks and thus exploit the potential of visual network analysis (Venturini et al., 2021). As a basic centrality measure, we considered betweenness centrality for two-mode networks (Faust, 1997; Brandes, 2001; Everett & Borgatti, 2005). Notably, betweenness centrality expresses the potential for a node to act as broker or intermediary in a network (Scott, 2000, p. 86), which means a claim or actor connects diferent areas of the graph. In addition, we performed a community detection analysis using the Louvain modularity algorithm implemented in *Gephi* (Blondel et al., 2008). Each cluster (or *modularity class*) emerging from this analysis combined densely connected claims and actors.4 As far as the *mimicry* strategy was concerned, we highlighted this in the network graph by tie colour (see below).

Lastly, we qualitatively analysed the narratives assembled in each clustering structure by assigning a given repertoire to each of them, where this repertoire was the result of a further content analysis of the ensemble of claims and actors making up the clusters.5 Tis also enabled us to detect several sub-structures within these networks, namely diferent

<sup>4</sup>However, the inclusion of actors within a given cluster may not be completely consistent with the main theme of the cluster: this is due to the probability of inclusion of a node within one cluster or another depending on the algorithm's potential to yield 'good' partitions. After all, the 'community structure of networks is, for instance, notoriously ambiguous' and 'for many networks, very diferent partitions are equally valid' (Venturini et al., 2021, p. 9). In addition, the diferent clusters emerged as linked by inter-partition ties that often break their separation, which is a key feature of RKC network structures (and, in turn, represents one of the complexities of community detection). 5Note that we will avoid speaking of communities in relation to the results of community detection procedure and refer to clusters or partitions (or modularity classes) instead, to prevent confusion with the term 'community' in the RKC sense.

sub-worlds each of which can be made of distinct clusters or even a combination of diferent clusters. Tis last step drew on the qualitative side of our analysis to interpret the betweenness centrality scores: when a high betweenness score expresses a 'fexibility' of objects in connecting diverse sub-groups of nodes that relate to it for diferent purposes, these objects (claims or actors) can be regarded as boundary objects that 'inhabit several intersecting social worlds' (Star & Griesemer, 1989, p. 393).

Finally, we analysed the network obtained from a union between the two social world networks examined. Tis analysis allowed us to identify the crucial statements and actors present in both RKCs, thus understanding which Covid-19 pandemic period actors and statements helped legitimise the construction and dissemination of forms of RK and which discursive structures were activated within these social worlds to provide epistemic credibility to these forms of knowledge.

#### **6.4 Analysis**

Te content analysis of the entrepreneur actors' discursive universes performed in the frst step of the study provided two sets of claims (192 for the AW RKC; 365 for the 5BLs RKC) and actors (1939 for AW RKC, 1940 for 5BLs RKC) which, as a whole, constitute the 'dual' healthrelated knowledge cores of each of these universes. By enrolling these actors and setting forth these claims, entrepreneurs handle the knowledge cores assembled to build and legitimise RKCs' claims. We identifed various categories of enrolled actors, such as (1) organs, tissues and cells; (2) diseases; (3) polluting pathogens; (4) scientifc disciplines; (5) distinguished international scientifc scholars; (6) authors of scientifc papers; (7) public fgures active in the debate on Covid-19; (8) media and social networks; (9) scientifc journals; (10) scientifc institutions; (11) people who participate in chats (e.g. with comments) on the online spaces run by the entrepreneurs and (12) other concerned actors (e.g. children, the elderly and shopkeepers).

Following the steps outlined in the previous section, we translated these knowledge cores regarding health into networked form by focusing on the links between each claim and the various actors, which were in


**Table 6.1** Number of nodes in the networks built for the two RKCs and their unions

turn connected to other claims. Te assemblage as a whole thus resulted in a complex confguration of network nodes constituting one possible representation of these RKCs and provided a map of their shared knowledge.

Indeed, a frst examination of the networks analysed revealed a degree of complexity that hindered their readability due to excessive relational data 'noise'. In other words, using these networks as maps required moving upward from a poorly informative terrain in which claims and actors may be associated with a minimum of one or two nodes (actors or claims, respectively) to a richer analytical framework in which associations involve at least three units for each claim or actor. We therefore focused analysis on a sub-network of each RKC extracted through a degree-based procedure called *k*-cores6 (Seidman, 1983) and then chose to limit our analysis to a subgraph with *k* = 3, that is, a 3*k*-core (Scott, 2000, p. 110; see Table 6.1).

For both RKCs, the community detection algorithm generated a clusterisation of claims and actors. Tis was the frst main fnding in our analysis, i.e. that the discursive spaces depicted via SNA were organised around various narrative repertoires that could be seen in the clusters resulting from modularity analysis. Te structures observed rendered the heterogeneity of assemblages and highlighted the diferential associations revolving around knowledge-specifc cores represented by the repertoires characterising the clusters. We thus analysed the structural confguration of claims and actors emerging from modularity analysis and identifed

<sup>6</sup> 'A *k*-core is a maximal subgraph in which each point is adjacent to at least *k* other points: all the points within the *k*-core have a degree greater than or equal to *k*. […] A *k*-core, then, is an area of relatively high cohesion within the whole graph' (Scott, 2000, pp. 110–111).

the main repertoire within each cluster. Indeed, the clustering of the discursive universes showed not only that RKCs use a range of repertoires but also that such repertoires adopt enrolled actor types that are specifc to them. For instance, Cluster 5 in the AW RKC (see below) was concerned with cancer and chronic disease prevention through an alkaline diet and its actors included two scientifc institutions, namely the *American Association for Cancer Research* and the *American Society for Biochemistry and Molecular Biology*, along with two papers (published in the journal *Cancer Research*), tumour cells and metabolic processes.

Te node colours in the graphs shown below for the two RKCs and their combination denote modularity class. Edge colours denote the presence (black) or absence (grey) of a mimicry strategy. A caption in each fgure shows modularity class number and colour, plus the percentage (in parentheses) of nodes included in each class.

#### **6.4.1 The Structure of Discursive Universes Legitimising RK Within the Alkaline Water RKC**

Figure 6.2 illustrates the clustering structure of the claim–actor network within the AW RKC (modularity = 0.645). Te content analysis of the claims showed a high degree of homogeneity of repertoires in each cluster, consequently diferent partitions can be classifed as belonging to the narrative repertoires shown in Table 6.2.

By visually analysing the network, we detected some central clusters (i.e. those with modularity classes 8-9-6-4-0-1-2-3) and some peripheral ones (modularity classes 5-10-7). As far as the related narratives are concerned, Clusters 8-9-6—those mostly scattered across the core of the network—provided the primary repertoires used by RKC members to sustain alkaline water's and food's ability to purify the body and defend it against the efects of toxic and carcinogenic pathogens, including the power of the alkaline lifestyle to enhance the immune system. Note also that clusters 9-6 (which are identically labelled) refer to the same repertoire, although they are distinct in the modularity analysis because of their diferent network connection patterns. As far as actors are concerned, biomolecular actors prevail in Cluster 9, while Cluster 6 includes

**Fig. 6.2** Two-mode network of claims and enrolled actors: the case of AW RKC (black lines = mimicry strategy)

actors better ftting the highly energetic lifestyle idea. Both Clusters 9 and 6—along with Cluster 3—encompassed claims asserting that water and alkaline nutrition improve physical and mental performance, stimulate fertility, are benefcial during pregnancy and counteract infammation caused by acidosis of tissues responsible for serious diseases and tumours. In the central Clusters 4 and 0, the promotion of water and alkaline food as a healthy lifestyle focused on diferent repertoires: acid–base balance as a characterising element for a healthy body and as an anti-ageing factor


**Table 6.2** Clusters and related narrative repertoires within the AW RKC

(Cluster 4); alkaline water and diet as a defence against viruses, including the SARS-CoV-2 coronavirus (Cluster 0). Te latter cluster includes claims contesting government anti-Covid-19 health policies. Cluster 1 is strongly connected to Cluster 0 and presents alkaline treatment as a way of enhancing personal awareness. Cluster 2 is less pervasive in the graph but still signifcant in its focus on claims arguing against the scientifc approach to cancer, chronic diseases and Covid-19 treatment.

Another area is made up of peripheral Clusters 5-10-7. Te Cluster 5 repertoire focused on alkaline water and food's ability to prevent cancer and chronic disease. Although claims relating to causes of tumours and their treatment were distributed across all clusters, this one featured claim–actor relationships seeming to favour the enrolment of scientifc actors in arguments for alkaline water as a way of preventing and treating tumours, such as scientifc journal articles, their authors or tumour physiology subjects. In addition, science also plays an important part in the Cluster 10 repertoire although, in this case, it is not enrolled to legitimise the AW RKC corpus of knowledge but rather falls into this repertoire for its perceived inability to understand and treat diseases, given its failure to consider the mind–body relationship. Cluster 7 includes claims arguing for the use of alkaline water to improve physical performance and strengthen the immune system, mainly on the basis of actors in the biology and physiology spheres, as well as scientifc institutions or physicians.

Tables 6.3 and 6.4 show the claims and actors with the highest betweenness centrality values. We noted that although both SARS-CoV-2 and Covid-19 are present in alkaline RKC narratives and feature in Cluster 0-2 repertoires, they do not play a key bridging role in them– either as a component in the claims or as actors. Te narratives revolve


**Table 6.3** Betweenness centrality of claims in the AW RKC network


**Table 6.4** Betweenness centrality of actors in the AW RKC

mainly around associations between acidic and alkaline body conditions and their consequences. In this sense, claim N113 ('Acidosis causes chronic diseases') bridged Cluster 5 and the rest of the network by focusing on chronic diseases as a consequence of acidity, while claim N137 ('Alkaline water has an anti-ageing efect') lay mainly in a central position, arguing for the anti-ageing efects of alkaline water, i.e. a less extreme assertion that helps explain this location in the network. Te following are the three most central actors: (1) publishers, because of their ability to provide RK with a readership; (2) ionisers, for their chief role as 'fexible' technological devices—as they serve various needs and have a range of possible uses and purposes (drinking, cleaning, saving money, avoiding plastic, etc.); (3) infammation, as a widespread condition impacting health and wellbeing with various degrees of severity. Finally, the ties in the network denote the widespread use of mimicry practices (64.6% of the ties) to legitimise RKC entrepreneurs' knowledge claims. Here, mimicry also goes along with the enrolment of scientifc and institutional sphere actors. Exceptions to the prevalence of mimicry are provided in Cluster 10, visibly peripheral and related to criticisms of institutional medicine, and in other more central areas of the network, mostly involving Clusters 9-6-0, where the strategy is partly mixed.

Finally, we noted that the analysis highlights not only the signifcant role in holding diferent narrative repertoires together played by 'tumour' enrolment but also by knowledge claims relating to the use of alkaline water to prevent tumours and 'acidosis' (combated by the alkaline diet) as a cause of tumours.

#### **6.4.2 The Structure of Discursive Universes Legitimising RK Within the Five Biological Laws RKC**

Te 5BLs RKC network would seem to be more complex than AW (Fig. 6.3). Basically, both the network and its 3*k*-core partition are larger than the other cases (see Table 6.1). Tis is due to (1) the higher level of interaction observed in the relevant online spaces, also evidenced by a large number of online users coded as actors, and (2) the wider spectrum of the knowledge contents coded as claims. As in the former case, the networked 5BLs RKC was divided up into diferent areas identifed using the modularity algorithm. Its community structure (modularity = 0.762) was rather fragmented with the algorithm yielding 17 modularity classes. Similar to AW, these clusters form both a core area (bottom centre of the graph) and a number of peripheral areas, plus several clusters occupying less dense areas and with sparser distribution than the others.

Starting from partitions with the largest proportion of nodes, Cluster 7, with its 'Causes of disease: fear and psycho-social conficts' repertoire, is located bottom left in the graph and divided up into two parts, one of which is highly cohesive and peripheral while the other is sparser and closer to the core of the graph. Te two parts of Cluster 7 are mainly held together by one of the claims with the highest betweenness in this graph, namely CLB186 ('Fear of death causes pneumonia'), which is representative of the repertoire of this cluster and also one of the claims relating health narratives to the Covid-19 crisis. Interestingly, the connection between this claim and the right half of the cluster is based on strategies other than mimicry: the separation, then, concerns the way this claim's

**Fig. 6.3** Two-mode network of claims and enrolled actors: the case of 5BLs

narrative is oriented towards enrolled actors, which form two seemingly unrelated sub-groups7 joined up by a 'boundary claim'—which owes its role to its connection to actors from other clusters (Table 6.5).

Cluster 1's repertoire relates to Covid-19 counter-narratives and occupies a central position in the graph, with some ramifcations towards other nearby areas. Tis cluster comprises the two central claims CLB84 ('Covid-19 is no more harmful than seasonal fu') and CLB80 ('Mortality rates from Covid-19 are very low', see Table 6.6), both of which are related to denying the dangers of Covid-19 (Table 6.7). Tese two claims

<sup>7</sup> In actual fact, setting the modularity procedure's 'resolution' parameter to less than 1—to produce a larger number of modularity classes (Blondel et al., 2008)—yields a clustering in which the two sub-parts of Cluster 7 belong to diferent clusters. By default, all the analysis presented was performed with a resolution set on 1.


**Table 6.5** Clustering of narrative repertoires within the 5BLs RKC

are responsible, to a considerable extent, for Cluster 1's central position because of their connections with nodes from other clusters—notably often related to people who comment on content online (one of which has the highest betweenness of all the actors). Cluster 4's location (bottom of the graph) in the network is also a subtle one. Te narrative repertoire of this cluster is about denying the dangers of viruses in general. It is split up into two sub-partitions, plus other sparse nodes. Te twohalves of the cluster are kept connected by the highly central CLB134 claim, which states that 'Te virus is not dangerous'. In sum, the positions of the frst three clusters refect the way in which the Covid-19 related repertoire tends to spread across the RKC, albeit in diferent forms.

A further set of repertoires belongs to clusters intersecting with the above. Tis is the case of Cluster 6 ('Links between institutional medicine, economic interests and policies'), Cluster 13 ('Epistemic relativism on Covid-19 and health') and Cluster 14 ('Unreliability of experts and institutions'), which lie at the core of the graph, though with some ramifcations. Tis is a set of repertoires that more directly question the


**Table 6.6** Betweenness centrality of claims for the 5BLs RKC network



validity and legitimacy of science and medicine. Furthermore, Cluster 13 is split into two-halves joined by the central CLB478 claim ('Social distancing brings about health-related and social damage'—see right-hand side of the graph), and the upper-right branch of this cluster extends to another area where Cluster 16 ('Opacity of health institutions') and topics more closely related to 5BLs and the latter's interpretation of confict and trauma (Clusters 8 and 5) are located.

Hence, Covid-19 and health institution narratives are scattered across the RKC and intersect one another, especially those related to clusters with more ties towards the core of the network than towards its edges. In this respect, Clusters 5-8-9-0 are located along the periphery. Tese denote narrative repertoires specifc to the 5BLs and are thus more extreme than other narratives, such as more Covid-19 and related counter-narrative focused ones. As far as the presence of mimicry as a strategy is concerned, the graph shows not only how prevalent this is (67% of all ties) but also how it fows through several branches of the network, following traces of Covid-19 pandemic counter-narratives and criticisms of medicine and science. In this respect, the way Cluster 15 ('Pandemic as a social experiment vs self-determination in health matters') is positioned merits consideration. Tis partition's subsets are detached from one another, denoting a presence within the core of the graph, along with more 'relaxed' narrative repertoires, and also towards the periphery (upper-right-hand side)—hence with more extreme subjects (such as totalitarianisms or 'quantum feld theory'). Te extreme sub-partitions also difer in strategy; the nodes in the upper branch of Cluster 15 are bound together by linkages unrelated to mimicry, while the opposite is true of the lower branch. Finally, this strategy also characterises the peripheral cluster ties related to 5BLs specifc repertoires.

#### **6.4.3 Combining the Network Structures of the Two RKCs**

Te network combining the two RKCs (Fig. 6.4) is modular in structure (modularity = 0.762) with a complex appearance in that it at least partly parallels the two distinct RKC groupings but also, at the same time, reveals some merging between the AW and 5BLs RKC repertoires. Te clustering results shown in Table 6.8 indicate that several clusters share the same repertoire and relate to claims from one of the two social worlds or to their combinations. Te repertoires of the two RKCs tend to

**Fig. 6.4** Two-mode network of claims and enrolled actors obtained by joining the AW and 5BLs RKCs

preserve their specifcity. Te 5BLs RKC focuses on criticisms of the way governments and health institutions have managed the pandemic (modularity Classes 13–14), general criticism of institutional medicine along with the denial of the Covid-19 pandemic (modularity Classes 1-7-8-12-15, even though Clusters 7 and 8 include a minimum of alkaline RKC claims) and 5BLs' interpretation of the psychological and social causes of the pandemic and the damaging efects of social distancing and protection devices (links to a counter-narrative on vaccines, Clusters 0-3-5). Clusters 2 and 4 are related to the AW RKC repertoires; namely, the acidity-alkalinity dichotomy and the benefcial efects of food and water for health and wellbeing (the latter with a minimum of claims from

#### **160 I. Picardi et al.**


**Table 6.8** Clustering of narrative repertoires within the network obtained by joining the AW and 5BLs RKCs


**Table 6.9** Betweenness centrality of claims for the joint AW and 5BLs RKC network

the 5BLs RKC). Cluster 6 is the only truly mixed one in terms of the origins of its claims.

Despite this apparent segmentation, the two RKCs seem to interact in some way, particularly if we look at the claims and enrolled actors with the highest betweenness centrality scores (Tables 6.9 and 6.10). Te graph in Fig. 6.4 shows the labels of the nodes with the highest scores for


**Table 6.10** Betweenness centrality of claims for the joint alkaline and 5BLs SW network

betweenness only. As far as the claims are concerned, the frst fve sorted by betweenness score lie on the upper (5BLs) and lower (AW) sides of the graph and concern, respectively, Covid-19-related narratives and those regarding acidic/alkaline polarities in relation to health; this also means that the network is virtually divided up into these two RKCs.8

As far as the fve enrolled actors (*children*, *physicians*, *viruses*, *the elderly* and *symptoms*) with the highest betweenness score are concerned, it is noteworthy that these are the actors that truly connect the two-halves of the graph and, more generally, the two diferent RKCs in them. Topologically, they are also exactly central in the graph, and when their connections are observed in detail, they link claims from both social worlds. More importantly, these actors can be considered boundary objects for their potential to translate interests from the diferent RKCs.

<sup>8</sup>Another claim—not shown in the graph—comes from both these two RKCs and is explicitly coded as such: ALB195 ('Governments and the media spread fake news about the pandemic along with false epidemiological data'). Nonetheless, it is the only such claim in a cluster made up entirely of 5BLs RKC claims.

#### **6.5 Discussion and Conclusions: Disassembling and Re-assembling Science**

Tis chapter presented an enquiry into the epistemic structures constituting the AW and 5BLs RKCs, in an attempt to discover (1) the core RK claims concerning health within the discursive universes in which they are constructed and disseminated, (2) enrolment by advocates of RK and (3) how entrepreneurial actors position their claims vis-à-vis science. In this respect, the choice to pursue a combination of qualitative analysis and network analysis techniques is in line with the chapter's aim to study RKCs as social worlds and map their organisation as assemblages among claims and heterogeneous actors. Te aim of the chapter's modularity analysis was to cast light on the structure of these social worlds and make them more understandable. Tis analysis provides the reader with an overview of the associations that emerged as signifcant in their support for RK, but with an eye to how entrepreneurial actors enrol other heterogeneous actors.

Tus, the clustering of the online discursive universes examined showed not only that entrepreneurial actors use diferentiated repertoires but also that these repertoires rely on specifc types of enrolled actors. Te confguration of the assemblages involving claims and actors relates to RKCs' shared purposes and practices, however the latter are internally diferentiated. Tus, one or more clusters may comprise elements whose association emanates from a given 'commitment' regarding health (e.g. alkaline water as a cure, symptoms as psychic-bodily reactions, etc.). Tis commitment is highlighted as the analysis displays the diferent repertoires constituting the knowledge core represented by the clusters obtained through community detection. In this respect, this analysis revealed that knowledge about health as it is practised within social worlds may be constituted through commitment to, and participation in, one or more RKCs, leading to broader arenas made up of multiple worlds organised ecologically around issues of mutual concern and commitment to action (Clarke & Star, 2008; Shibutani, 1955; Strauss, 1959). What is of chief interest in the confguration of the RKCs examined here is that discursive enrolment occurs with a deployment of diferent actors functioning as allies irrespective of their origin, usage or function.

Tus, the analysis showed the *hybrid nature of the RKC epistemic enrolment space*. Reticular representation of the discursive universes of entrepreneurial actors who play a leading role in RK legitimisation processes allowed us to analyse the way such RK is supported by networks constructed by assembling actors and claims from diferent RKCs. In the transposition from one social world to another, the roles and interests of actors and claims change. Tese latter, as elements in assemblages, are arranged and aligned to respond to the cognitive needs defned in the various clusters identifed in the analysis, but without being forced to conform entirely to the diferent local settings in which they are enrolled.

In this regard, observing the science transposition processes, which are enrolled in various forms in an attempt to support the legitimation of RK, is particularly signifcant. In the discursive universes designed to increase RK credibility, ongoing processes involving moving closer to and further away from science were observable. Within the RKCs epistemic enrolment space, the enrolment of science emerges as the result of a continuous (re)negotiation of science *contestation* processes, on one hand, and science *purifcation* processes, on the other. Tese two trends emerged from our analysis as follows.

Te narrative repertoires marshalled to contest science revolve around the *medicine betrayed* theme. Having abandoned a holistic vision of treatment that conceives of wellbeing as an expression of an integrated mind– body organism and the medical profession's ethical principles as set out in the Hippocratic Oath, modern medicine is unable to understand the causes of diseases. Institutional medicine focuses on treatment of disease rather than healthcare. In science-critique narratives, a key role is played by interpretations of cancer treatment and the practices pursued to limit the dissemination of Covid-19. Both the scientifc community and communication structures are enrolled in these narratives as organisations manipulated by lobbies which include denying scientifc claims, thus providing alternative claims to explain health problems. Te methods and tools of institutional medicine (including diagnostic ones) are rejected, as they focus on disease rather than health and on a conceptualisation of the body as a set of distinct organs, including the mind, rather than the unitary organism propounded by holistic models. Epidemiological data is denied, i.e. deemed untrustworthy on the grounds of institutional medicine's distorted perspectives or corruption in the scientifc community and information systems. Finally, ofcial views of the causes of disease are considered to be wrong. In the case of the AW RKC, diseases are attributable to a state of acidosis in the body's tissues, while in that of 5BLs, they are to be explained by conficts bound up with past psychic traumas leaving biomolecular scars in human tissues.

Tus, for these RKCs health is a matter of rebuilding a state of lost equilibrium. In the AW RKC, the equilibrium referred to is the acid–base equilibrium. Displacement from this balance causes cellular ageing, infammation, malaise, chronic and/or degenerative diseases and tumours. Alkaline water is thus considered capable of restoring this balance, and a wellbeing and prevention practice as well as a treatment for diseases and tumours. Te body of knowledge advocated by the 5BLs, on the other hand, refers to a body–mind balance. Diseases are, in fact, interpreted as imbalances generated by psychic conficts deriving from prenatal and natal traumas. Care practices within this narrative infrastructure are presented as paths of awareness requiring subjects' active agency. And it is essentially through this process of acquiring—strongly practical and experiential—scientifc knowledge that science is purifed. Science itself is enrolled to legitimise forms of RK, e.g. the biomolecular claims attesting to the benefts of alkaline water on health or the scientifc evidence marshalled to testify to the veracity of Hamer's psychobiological framework model.

Tese disassembling and re-assembling science processes are driven by a constant reworking of claims and actors within the RKC epistemic enrolment space. A key role in these processes is played by the boundary objects identifed in the analysis of the unions between the two RKCs. Te merging of the repertoires belonging to the two RKCs highlights claims and enrolled actors acting as boundary objects in the narratives examined. What counts in this respect is the role played by these boundary objects in the processes of *translation* between diferent repertoires: indeed, these objects allow us to move from, say, a biomolecular repertoire to a political repertoire—as happens, for e.g. with viruses, a recombinant agent in these repertoires. Narrative structures are also sustained by these translations.

Within this heterogeneous epistemic enrolment space, the tension deriving from these science disassembling and re-assembling processes is balanced by boundary objects responding to the need for network coherence. Paradoxically, our analysis showed that a key role in holding diferent social worlds together is played by actors such as *children*, *physicians*, *viruses*, *the elderly* and *symptoms*, together contributing to reinforcing a narrative on health entirely played out within the contested narratives of these RKCs.

In this sense, a key role is played by Covid-19, which acts as an arena within these social worlds and allows further elements designed to augment RK credibility to be added. Te SARS-CoV-2 virus, infection, Covid-19 symptoms, social distancing and the health-related and social damage it causes, pandemic fake news allegations and the epidemiological death and infection fgures spread by governments and the media are all enrolled to bring together elements from diferent social worlds (among these, the social worlds of science) to further legitimise the forms of knowledge advocated. In this sense, an analysis of RKCs focusing on the assemblages at work within these discursive spaces can increase our understanding of the extent to which RK is the result of bricolage processes and a reworking of conceptions and practices which acquire meaning in relation to one another, even when the pieces of knowledge thus deployed and articulated come from science itself and are reframed and recombined, as needed, to make sense of these assemblages.

#### **References**

Becker, H. S. (1986). *Doing things together*. Northwestern University Press.


Bloor, D. (1976). *Knowledge and social imagery*. University of Chicago Press.


**Open Access** Tis chapter is licensed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/ by/4.0/), which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence and indicate if changes were made.

Te images or other third party material in this chapter are included in the chapter's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the chapter's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder.

# **7**

# **Challenging the Institutional Politics of Life in the Making of Refused Knowledge**

**Stefano Crabu**

# **7.1 Introduction**

Addressing the question of how people actually give credibility to healthrelated refused knowledge (RK) inevitably involves taking on the challenge inherent in considering fundamental issues concerning their epistemic stance and beliefs about the social and political organisation of science and of biomedicine-related felds. Indeed, refused knowledge communities (RKCs) can be analytically framed as specifc social worlds (see Chap. 2 by Federico Neresini), in the context of which questioning science-related epistemic, professional, and political arrangements is a crucial dimension of mutual concern. Hence, understanding refused knowledge followers' attitudes to biomedical theories and their part in public health and healthcare systems and professional healthcare practice is urgent if we are to cast light on the conditions nurturing the legitimacy of knowledge emerging outside the boundaries of science.

© Te Author(s) 2024 **169** F. Neresini et al. (eds.), *Manufacturing Refused Knowledge in the Age of Epistemic Pluralism*, https://doi.org/10.1007/978-981-99-7188-6\_7

S. Crabu (\*)

Department of FISPPA, University of Padova, Padova, Italy e-mail: stefano.crabu@unipd.it

Against this backdrop, the aim of this chapter is to shed light on how RKCs engage in a contentious relationship with the conditions under which biomedical knowledge is shaped and mobilised by health professionals. In so doing, it elucidates how these contentious dynamics are entangled with the ways in which RKCs confer credibility and reliability on refused knowledge itself. Indeed, RKCs are not merely concerned with challenging the content of scientifc and biomedical knowledge. Tey also question its epistemic, professional, and economic roots, that is, RKCs argue that claims and knowledge elaborated and enacted in the context of biomedicine, and the life sciences in general, are enmeshed with specifc social, political, and material interests, and therefore either not to be believed or at least treated with scepticism. Hence, not only does conferring credibility on refused knowledge imply certain assumptions about trust and truth but it also requires critical scrutiny of what we might call 'the institutional politics of life' (see Rose, 2007)—that is, how States and related governmental bodies, medical agencies, life scientists, and health professionals control, manage, and reshape the very vital capacities of human beings as living bodies.

Critical scrutiny of this sort is generally performed by a number of pivotal actors widely recognised by refused knowledge followers as epistemic experts and public spokespersons (Bory et al., 2022) due to their book and paper publishing work, management of relevant digital spaces (such as blogs, public Facebook pages, Telegram, YouTube, and TV channels), and organising of in situ initiatives (such as conferences, workshops, and learning events), also designed to recruit potential new followers. Tese actors thus undertake claim-making (Lindekilde, 2022), acting both as gatekeepers of truth in relation to a refused knowledge corpus, and as 'analysts' considered capable of uncovering political and economic dimensions allegedly capable of jeopardising scientists' integrity and trustworthiness and that of their knowledge and healthcare practice. Tus, RKC claim-makers articulate demands centred on the interests of a single social world or capable of bearing on a number of social worlds constituting an arena 'organized ecologically around issues of mutual concern and commitment to action' (Clarke & Star, 2008, p. 113; see also Chap. 8 by Morsello et al.). Moreover, considering that the claim-making process 'includes two actors—a subject (claimant) and an object (addressee)—and a verbal or physical action (demanding, protesting, criticizing, blaming, etc.)' (Lindekilde, 2013, p. 1), RKC claim-makers often have explicit and formalised epistemic concerns regarding biomedicine. Hence, they make socio-political demands for a diferent (public) health and illness management in the public sphere. In fact, in their attempts to publicly demonstrate the relevance of adopting a given refused model of healing and caring for the sake of individuals and society at large, claim-makers generally adopt an adversarial relationship to scientifc communities and medical practitioners. In so doing, not only do they critically address specifc scientifc health- and illness-related contents (e.g. the safety of vaccines, the efectiveness of chemotherapy, and the non-danger of electromagnetic waves), but they also target the epistemic, professional, and political conditions by which biomedical knowledge is shaped (e.g. alliances between scientifc institutions and the biomedical industries) and enacted by healthcare professionals.

From these starting premises, this chapter aims to analyse the ways in which the most infuential claim-makers of the four RKCs considered in this book (see Chap. 1 of this volume) seek to challenge the current politics of life as a way of enhancing the refused knowledge credibility conferral process. Tis focus on the claim-makers' perspective allows us to highlight how RKCs critically discuss the epistemic conventions, rationalities, policies, and professional arrangements underpinning the institutional politics of life in their approach to health- and illnessrelated issues. Hence, in the process of legitimising a body, or pieces, of refused knowledge, claim-makers elaborate specifc substantive concerns regarding the epistemic, economic, and political background of biomedical knowledge and professional healthcare practice. In this regard, certain arguments inherent to the politics of life critique are specifc to a single RKC (e.g. how to practically manage a state of malaise), while others cut across multiple social worlds (e.g. global biotech corporations as a threat to public health), thus generating a shared discursive arena.

### **7.2 Contesting Contemporary Politics of Life in the Legitimisation of Refused Knowledge**

Since World War II, scientifc biomedicine has succeeded in establishing its epistemic authority and moral force in the public understanding and management of health and illness issues, thus acquiring a broader cultural, political, and administrative meaning (Clarke et al., 2010; Crabu, 2018; Tomas, 1972). Specifcally, the development of standardised protocols for repeatable and controlled experiments and, more recently, the development of evidence-based medicine, together with a supposedly unbiased understanding framework for biological phenomena, have allowed scientifc biomedicine to assert authority over questions of health and illness (Berg & Timmermans, 2003). Tese developments have enabled the exponents of scientifc biomedicine to publicly advocate for the socio-political authority to set their expertise to work in the management of everyday life for the sake of individuals and wider social wellbeing (Conrad, 2005). Indeed, the social relevance of biomedical knowledge has increased not only via the expansion of biomedicine's jurisdiction over human life—both behaviourally and bodily—but also as the basis for a more widespread health–political governance of society (Rose, 2007; Prainsack, 2017). From this perspective, scientifc biomedicine provides the cognitive and normative resources by which populations and their governance are segmented on the basis of diverse nosological classes whose overall objectives are both disease control and public health maintenance and improvement. Accordingly, scientifc biomedicine circumscribes a politics of life designed to address the vital processes of human existence, thus supplying the shared vocabularies, techniques, and instruments with which scientists, doctors, biotech companies, and individuals address health and illness matters.

Whilst the politics of life play a pivotal role in ordering and confguring the vital processes of human existence (from birth to death and human reproduction and from disease to mental health), over recent decades, scientifc biomedicine has become increasingly exposed to social pressures. Tis is due to the dominant role played by research scientists and biomedical organisations in framing human behaviours and problems as medical conditions.

Questioning the monopoly of research scientists in defning how health and illness conditions are identifed and managed is not in itself new (Mahr, 2021). Indeed, what lies at the centre of this confict are claims to the right to other forms of knowledge in the approach to the human psychological and biological condition, as the growing consensus on alternative models of caring and healing among both ordinary people and communities of health professions shows (see Brosnan et al., 2018; Gale, 2011, 2014). Nevertheless, this confict was recently exacerbated, at least in the public sphere (see Crabu, 2023), by the COVID-19 pandemic, during which groups of concerned people claimed that 'true' and 'useful knowledge' are not necessarily the preserve of science and thus of the prevailing politics of life and its representatives. Indeed, RKCs developed knowledge—rejected by the scientifc community and its practitioners—on how to manage health and wellbeing during everyday pandemic life (Desta & Mulgeta, 2020; Lasco, 2020). In so doing, they also redefned and reinforced key discourses and narratives—often shaping broad arenas (see Chap. 6 by Picardi et al. and Chap. 8 by Morsello et al.)—critically targeting the institutional politics of life as a way of enhancing the legitimacy and public relevance of their refused knowledge claims. As Bijker et al. (2009) argued in a study on the transformation of scientifc authority, ours is an era in which the authority of science is being increasingly challenged, at a time when the need for scientifc advice is especially urgent (i.e. the COVID-19 pandemic). In this regard, according to the viewpoint of the RKCs examined in this volume, the institutional politics of life is no longer capable of efectively serving the public interest because it pursues goals conficting with the welfare of society and stops individuals from making informed health-related decisions.

Two major dimensions of this critique can be analytically identifed. Te frst relates to disputing the conditions and arrangements under which actionable biomedical knowledge is produced. Among RKCs' claim-makers and their followers, a stance critical of biomedical research methods and technologies leading to disease treatment protocols is common. Tis frst critical dimension is less a matter of questioning biomedical knowledge per se but rather an ensemble of formalised or formalisable epistemic conventions and research practices shared by scientifc communities engaged in producing biomedical knowledge. Te second target of claim-makers' critiques is a set of political-normative elements that include a health professional approach which has led to an extension of medical power over vital processes, as well as a growing corporatisation and commodifcation of biomedical research and healthcare practice.

Tis twofold critique of the current institutional politics of life can be analysed by disentangling two interrelated dimensions of mutual concern:


Tese two interrelated dimensions echo a phenomenon that has recently been labelled 'science-related populism' (Mede & Schäfer, 2020; see also Bory et al., 2022a, 2022b), to describe the confict between a (supposedly) truthful and honest general public and an academic and scientifc establishment (supposedly) lacking moral principles and engaging in deceitful or fraudulent practices. Accordingly, this confict arises from the elite's unjustifed assertion of authority in scientifc decision-making and the public's rightful demand for greater control over such decisions and the pursuit of truth (Mede & Schäfer, 2020). Te science-related populism concept is doubtless relevant to an analysis of the way that public debate on scientifc facts and the trustworthiness of scientifc institutions can spark complex debates around the social meaning of 'truth'. However, it primarily emphasises the oppositional nature of the confict between scientifc institutions and other competing forms of knowledge.

Indeed, focusing on the two dimensions described above allows us to highlight not only that RKCs are discursively organised around 'counter-factual' arguments regarding biomedical evidence and advice but also that they are mutually committed to elaborating accusations of epistemic weakness and pointing the fnger at the socio-political circumstances surrounding the authority of scientifc biomedicine and its practitioners. In other words, not only do RKCs challenge the epistemological foundations of biomedicine but they also engage in sociopolitical critique. Tey thereby contribute to shaping the knowledge basis for informed decision-making and political engagement in healthrelated matters. In so doing, they elaborate on a contingent critique of the institutional politics of life as a strategic resource for developing and endorsing refused knowledge itself. Tus, critical scrutiny of the current politics of life constitutes both a predisposition to generate and endorse refused knowledge and part of the attribution of credibility and legitimacy to a body of refused knowledge itself. From this perspective, challenging the prevailing politics of life is therefore complementary to the task of actionable refused knowledge elaboration. Hence, the ways in which RKCs' followers perceive and understand their everyday experiences according to a body of refused knowledge are not independent of the critique of the institutional politics of life's management of health matters and biological human life. A certain degree of ambivalence notwithstanding, this critique is a fundamental basis for refused knowledge claim-makers' arguments regarding the importance of the need for the co-existence of multiple models of caring and healing within public health systems.

# **7.3 The Institutional Confguration of the Politics of Life Under the RKC Lens**

On the basis of the conceptual framework discussed above, the next two sections of this chapter aim to highlight the intertwined critique of both the epistemic and political conditions shaping the biomedical knowledge manufacturing process, as well as the resulting implications for the ways health professionals mobilise this knowledge in public health management. Tis twofold critique is not merely oppositional but also generative, as it is closely related to a wider shared discursive arena that is relational and supports meaning-making in conferring credibility and solidity on knowledge refused by the scientifc and biomedical institutions.

#### **7.3.1 RKCs Challenging the Alignment of the Normal and the Pathological**

Te frst issue of mutual concern at stake in challenges to the politics of life regards the scientifc and technological arrangements followed by scientists in aligning the 'normal' and the 'pathological'. Or, in other words, refused knowledge claim-makers question the existing confguration of instruments, expertise, biomedical standards, health technologies, and protocols by which research scientists identify and make sense of both normal and pathological biological conditions of the human organism. What is at stake here is a critical examination of the nosographic research that turns certain biological conditions into objects of biomedical concern and intervention. In this regard, RKCs criticise research procedures and treatment validation methods within the biomedical landscape, such as evaluations of clinical options via experimental studies, blind assessment, clinical trials, and statistical inferences. In so doing, RKCs frame the prevailing therapeutic protocols as a sort of unfathomable 'black box' about which people are only allowed to know the inputs (i.e. top-down nosographic classifcations of biological conditions) and outputs (i.e. medical treatment) and no more. Hence, RKCs view ready-made biomedicine as an epistemic domain based on opaque research procedures. Refused knowledge claim-makers state that people are no longer bound to accept this biomedical knowledge 'dictatorship' and encourage individuals to make their own personal judgements of both scientifc evidence and refused claims on the basis of an experiential research approach. Here the case of the 5BL-based social worlds is particularly illuminating:

Te statement 'Expert opinion should be taken as fact: experts know what they are talking about and what do you know about it?' is false and misleading. However, it is especially important in regard to health that, having listened to experts, we all gather enough information to form our own opinion. I'm talking about opinions because today, unfortunately, the majority of the medical world is completely lacking in irrefutable evidence. Hence, when there is no clear evidence of efectiveness, we must all learn how to gather the correct information and be free to make our own choices.

(Quotation from the '5BL—Te magazine about the 5 Biological Laws')1

Well, what has medicine achieved until now? Exactly the opposite of that of the fve biological laws. Tat is, it has established protocols and doctors are no longer free to be doctors. Tey just have to study the protocols by heart and, in the face of symptoms described by patients use those ten pills or that type of intervention. If a doctor follows the protocols, even if the patient dies he or she cannot be prosecuted, the doctor I mean, because s/ he followed the protocols. If the doctor prescribed nine pills rather than ten, then someone can say: 'No, then you didn't follow the protocols'. Te problem is that we need to understand that there are no protocols, since there are individuals with their perceptions and experiences, and here I need to understand their childhood, understand how they have lived.

(Interview with BL1, claim-makers in the 5 Biological Laws Community)

RKCs view the methodologies and expertise via which biomedicine is believed to represent the truth on health and illness issues with suspicion and distrust, arguing that scientifc biomedicine exercises control over public health through untrustworthy protocols with no basis in publicly

<sup>1</sup>Te *5BL—Te magazine about the 5 Biological Laws* is one of the major online magazines disseminating German New Medicine and the so-called 5 Biological Laws and their application. It is managed by one of the most infuential claim-makers within the Italian 5 Biological Laws milieu. Full article available here: https://magazine.5BL.eu/2017/07/opinione-espertoeminencebasedmedicine-5227.html

accountable and verifable research procedures. Hence, for the RKCs, such protocols are harming healthcare practice. In the jargon of some refused knowledge claim-makers, medical experts and scientists are labelled derogatorily as 'His Eminence', to denote that trust in biomedicine is currently a dogmatic act of faith, and not an informed judgement based on the reliability and accountability of the research procedures adopted by the scientifc community. Further, physicians—in their capacity as users of ready-made clinical protocols—are framed ambivalently, as both perpetrators in a domain based on untrustworthy expertise and victims of this same domain.

On the basis of this critical stance, refused knowledge claim-makers urge their followers to mobilise their experiential expertise to systematically verify the reliability of knowledge—instead of passively accepting institutional scientifc enquiry as the sole certifed source of truth and knowledge. Whilst sometimes mimicking certain of the argument repertoires and explanatory rhetoric pertaining to the scientifc establishment (e.g. citing papers available on online scientifc search engines such as *PubMed* which support their arguments and hypotheses), they urge people to treat institutional experts' advice sceptically and engage in generating and assessing knowledge through experiential expertise (Crabu et al., 2023; Pfster & Horvath, 2014). Tus, RKCs blur the prevailing expert boundaries, questioning the scientifc monopoly and viewing experiential expertise as a basis for health decision-making. From the RKC perspective, experiential expertise is a matter of the need to gather a concrete and narratable body of evidence about bodily and psychological experiences not represented in the prevailing scientifc domains, and of use both in improving wellbeing, and resisting potentially harmful biomedical knowledge and advice:

I have worked a lot in thoracic surgery and, therefore, I have seen many lung cancers. A surgeon might say, 'Ah, but this guy smoked ten cigarettes a day!' Well, I understand that he smoked ten cigarettes a day, but you have to explain to me why the tumour developed only in the upper lobe of his left lung. Why are you not considering this point? Why did the tumour only afect that part? Why hasn't the tumour spread to all of the lungs? It afected the left main bronchus, and then it afected the upper lobar bronchus, and then it stopped there. Why didn't it take everything? And there, and there. … And they don't know how to answer you. Got it? Tey can't answer you. Tey don't have an answer, since they can't see the subtleties of things. Tis is called reductionism, isn't it? Reductionism. Tere's one big problem with reductionism: that it leads you to 'It's the smoking'. Te smoking? But smoke can afect both lungs. Why did it afect just one part? And why did it cause a bronchial carcinoma instead of an adenocarcinoma, for example. Tere are some important histological diferences that the 5 biological laws can illustrate well. And they don't know how to answer you there. And, therefore, when they don't know how to answer, they also say that it is genetics. And that's how they dismiss you.

(Interview with BL2, claim-makers in the 5 Biological Law Community)

Te 5BL RKCs thus maintain that diseases and the clinical and pathological explanations of them by scientifc biomedicine are fundamentally based on research procedures that are incapable of grasping the complexities of the human body. What they see as institutional biomedicine's reductionist mind-set has, they believe, led to certain signifcant factors being underestimated or ruled out, such as the psychosomatic dimension. Tey argue that restoring centrality to factors such as these, excluded by institutional biomedicine from its domain of expertise, is crucial to developing efective experiential knowledge for individual and public health management. For Alkaline Water RKCs, for example, COVID-19's respiratory symptoms relate to a weakening of our immune systems caused by excessive body tissue acidity that could be efectively treated via an alkaline diet. Hence they argue for the importance of alkalisation practices as a way of strengthening the immune system:

It seems plausible to assume that the gut is the cause or that it aggravates SARS-CoV-2 infection. Te respiratory tract hosts its microbiota, but patients with respiratory infections generally present with intestinal dysfunction, which is related to a more severe clinical course of the disease, thus indicating a relationship between the gut and the lungs. Tis phenomenon can also be observed in patients with COVID-19. […] Treating the intestinal microbiota can be a new therapeutic option, or at least an adjuvant therapeutic choice.

(Post on Facebook page by SM, physician, and promoter of alkaline water)

In contesting biomedicine's scientifc and technological arrangements, RKCs endorse (naïve) holistic principles to question what they see as the Cartesian 'mind–body' dichotomy on which modern medicine is rooted. Tey thus attempt to shape new kinds of facts (e.g. psychological shock as a cause of tumour) that institutional health professionals have not yet considered or that they do not even consider to be 'trustworthy facts'. Hence RKCs mobilise their experiential expertise to introduce new kinds of evidence which they see as strengthening the legitimacy of their claims for standing within the refused knowledge domain. For example, where the pro-vaccine choice milieu is concerned, the RKCs seek to 'develop' self-tested protocols to boost the immune system via natural products or food supplements, through peer-to-peer experimentation and discussion:

My 8-year-old son is a non-severe asthmatic. I was thinking of starting to give him vitamin C, whose potential I have only recently discovered, in the hope of getting rid of the bronchial dilator and cortisone. I was wondering what other vitamin or supplement I could combine with vitamin C to improve his immune system? I'm also asking you, in addition to the pediatrician's advice and the info I've already found on the internet, because I think your direct experiences could be just as enlightening. Tank you.

Comment by member B to the original post: I have a disease of the immune system. In addition to vitamin C, I take capsules with powdered Cordyceps mushrooms. It is wonderful in general but especially with tonsil problems.

Comment by member C to the original post: Personal experience … the frst thing to do is to eliminate milk and dairy products, and you will already see big improvements. If I had known before, I would have avoided many drugs, cortisone, and bronchodilators.

Comment by member D to the original post: I started this winter with vitamin C for my baby and for us, and this was the frst year without cortisone, antibiotics, and dilators. I hope it will be the same for you.

(Quotations from 'Comilva' Facebook page, 31 January 2020)

RKCs' members consider experiential expertise on their own bodies signifcant as well as producing or assessing actionable knowledge making them active players in their own physicality and psyches. Tey thus juxtapose the scientifc and technological background of the current institutional politics of life with what they consider to be its paternalistic, untrustworthy, and authoritarian form of expertise. From the RKCs' perspective, for any specifc evidence and information to be accepted as legitimate and true, it must always be tested and experienced directly by those afected. Tey therefore demand a form of testimonial knowledge based on experiential expertise which they thus deem more credible (van Zoonen, 2012). In this respect, the people involved in RKCs are not only proactive in learning more about themselves and their own bodies but they also argue that what they learn must be shared with others for further testing (independently of institutional biomedical expertise) with a view to strengthening a body of knowledge that is both individually actionable and collectively accessible for the management of health outbreaks. In some cases, this knowledge might not yet have been refused by institutional science, since a concerned RKC might still be engaged in validating its trustworthiness through experiential research. In this way, RKCs intend to produce fresh evidence, not only for experience-based knowledge acquisition and sharing but also in order to test it on the very practical level of their own needs.

From this perspective, RKCs elicit a style of research that is closely bound up with everyday practice. Indeed, most perceive statistical calculations, abstract scientifc theories, and technologically mediated representations of biological processes as potential tools of deception. Tey regard individual stories, series of cases, and variations on situated healthand illness-based accounts as more suitable ways of assessing the knowledge they share about healing and caring. Tis, RKCs argue, is a way to evaluate knowledge which takes full consideration of experiential practices and ideas, and to obtain far more reliable and accountable evidence than that emerging from scientifc biomedical procedures, such as randomised clinical trials. In this respect, it should be noted that stances of this kind are widespread among RK claim-makers, although RKC followers more generally take a more nuanced approach, attempting to hybridise institutional biomedical care practices in the light of their experiential knowledge (see Chap. 3 by Paolo Volonté). However weak refused knowledge might appear from the outside, it is both self-experienced and empirical and therefore perceived as valid from within the RKC concerned. Teir epistemic stances rely on the intimacy of bodily and psychological perceptions. What is at stake here is not an 'impersonal' datafcation approach to the living body but an experiential approach to one's own body, subjective sensations rather than formalised experimental protocols, more readily understandable individual experiences rather than the expert exclusivity of biomedical knowledge.

In contrasting the epistemic positioning of prevailing biomedicine, RKCs support a conception of 'direct empiricism' by which dependable facts, events, and evidence are those which we are able to perceive directly with our own senses and cognition, needing no mediation and thus no institutional experts and health professionals. Hence, experiential expertise can come across to RKC followers as a better epistemic strategy, based on the concept of the greater reliability of knowledge self-produced by users, a kind of 'prosumer medicine' based on direct empiricism.

#### **7.3.2 Contesting the Professional Arrangements of Scientifc Biomedicine**

Te second signifcant dimension of RKCs' opposition to the biomedical politics of life concerns its questioning of the professional biomedicine milieu. In this regard, health professionals and medical experts are framed as a body of practitioners operating primarily under the control—the yoke—of political elites, global biotech corporations, and 'Big Pharma', such as AstraZeneca, believed to have exploited the COVID-19 pandemic to pursue its own political and economic ends. Health professionals, and general practitioners in particular, are depicted by RKCs as victims of powerful actors (e.g. national medical associations, Big Pharma, medical regulatory agencies) pursuing harmful interests and dominating the institutional biomedical landscape. Subjugation of this sort is seen as potentially preventing physicians from pursuing collective and public health interests. National and supranational political decision-makers operating in the feld of public health (e.g. national and supranational medical agencies such as the national health institutes and health ministers) and vast segments of healthcare sector employees are seen as accomplices of the pharmaceutical industries in their pursuit of interests running counter to the public interest, since they might hide efective treatments or create ad hoc diseases and pandemics in order to sell drugs or subjugate the population:

Once we went to the emergency room. But I don't remember why, my son wasn't well … and they give us antibiotics. … I looked at the doctor and I told him, 'Why antibiotics?' I mean, I don't remember the pathology or what my son had that time there. Te doctor told me, 'Well, if in doubt, let's give it to him'. I didn't give it to him, and he recovered quietly. It's not so much traditional medicine that I don't trust, but I don't trust those ofering it to you, because there are economic interests behind it that are crazy. You want to give antibiotics to my son?

(Interview with FV1, Pro-vaccine choice follower)

[…] A whole industry is developing around cancer, a whole industry, a whole pharmacological, surgical, radiological induced industry. You have no idea about all this. Unfortunately, I do! […] I work with drugs. Fourfve millilitres of drug—I'll tell you, huh?—that's sixteen thousand euros. You can understand that there when anyone, anyone who says, 'I have found the cure for cancer and drugs are not useful!' either they shoot him immediately, directly at the moment he says it, or he is isolated, pilloried by the media or met with deadly silence.

(Interview with BL2, claim-makers in the 5 Biological Laws Community)

For RKCs the institutional biomedical feld—and especially the behaviour of those engaged in the practical mobilisation of biomedical knowledge—is inherently biased by the proft logic pursued by biotech conglomerates. Hence, in their view medical health workers' professional practice is thus partisan, since scientifc accuracy, the release of open data to public scrutiny and verifcation, and the evidence-based approach to medicine are ancillary and subordinated to the fnancial interests of biotech and pharmaceutical corporations. RKCs demand an 'evidential culture' (see Collins, 1998) that considers a variety of experiential fndings as potentially relevant data. Indeed, in their reasoning, the existing political and institutional underpinnings of scientifc biomedicine allow biotech and pharmaceutical corporations to manipulate the production of reliable evidence on health matters. Tey believe that the shortcomings of health professionals and scientists can only be ofset by other kinds of facts, especially those elaborated by RKCs as non-proft actors. Tis, RKCs' claim-makers argue, may compensate for the problem of health professionals and biomedical organisations systematically rejecting, or not producing, knowledge fostering individual and public health.

In this respect, two major issues channel RKCs' critiques of the professional biomedical practitioner milieu. Te frst concerns the fact that scientists and medical experts are keeping something from people (e.g. the manmade origins of the coronavirus in China or the dangers of electromagnetic pollution to health and the environment). Te second is that the practice of biomedical research has alienated itself from its own epistemic roots to pursue profts and develop new forms of individual control and subjection (e.g. mandatory vaccine policies or human genetic therapies):

Do you remember the media panic artifcially created to infate public spending on drugs? Do you remember the conficts of interest within the World Health Organization? Te collusion between national governments and pharmaceutical companies, do you remember them? Do you remember the drugs sold for billions of dollars to all the governments of the world, which only after a few years turned out to be completely inefective and toxic? In this period of panic for the 'new coronavirus 2020', it is worth refreshing your memory to keep the attention on these potential dangers […].

(Quotation from the *5BL—Te magazine about the 5 Biological Laws*) 2

As far as vaccines are concerned, there is a game worth several billion at play, because pharmaceutical companies don't give away vaccines. If we look at Europe, Pfzer, with the production of vaccines scheduled for this year [e.d. 2021], will earn over 30 billion euros. It's a lot of money. Te problem is trust: why, then, should I trust someone like Pfzer, which has been found guilty more than once? More than one conviction for violations of human rights, including illegal experimentation in developing countries. It experimented with drugs. … It experimented with drugs on children, exploiting parents' ignorance, among other things.

(Interview with FV2, Pro-Vaccine choice follower)

<sup>2</sup> See footnote 1 for details about Te 5BL—Te magazine about the 5 Biological Laws. Full article available here: https://magazine.5BL.eu/2020/02/coronavirus-2020-panemie-artifciali-mediatiche-5320.html#ixzz7Wqm4njCt.

#### **7 Challenging the Institutional Politics of Life in the Making…**

Such concerns have been debated widely within various RKCs, thus shaping a broad discursive 'substantive arena' (Clarke & Star, 2008) that consolidates a collective anti-establishment stance as a way of raising awareness of the need to combat what is seen as a powerful biomedical elite. Accordingly, as we saw in the previous section, RKCs urge their followers to take health research back into their own hands or to check the trustworthiness of a body of evidence via experiential expertise. Experience-based research can be supplemented by alliance building with scientists and researchers seen as independent, such as the Ramazzini Institute3 in Italy. Tis is an approach taken by the Stop-5G community (see Chap. 5 by Simone Tosoni), which is considered emblematic of 'good research' due to its independence of Big Pharma and the biomedical elites. Hence, it is not a matter of rejecting science or an abstract scientifc ethos per se. On the contrary, RKCs question the moral principles of health professionals, and the professional politics of life approach, which they accuse of having been corrupted by biotech conglomerates in cahoots with the World Health Organisation, the European Medicines Agency, and the medical authorities in general.

Te emergence of a cross-RK arena was evident during the COVID-19 pandemic (see Chap. 8 by Morsello et al.). In such circumstances, RKCs' followers considered the pandemic a political tool in the hands of the prevailing biomedical elites designed to control human behaviour and govern public health on the basis of unfounded claims about a supposed global infection outbreak. 'I am my own doctor' was, in fact, one of the main discursive *trait d'union* in various RKCs during the COVID-19 pandemic. Te belief that the dominant biomedical establishment, in league with political elites and biotech corporations, is responsible for a worsening of public health is especially appealing to RKCs' followers. Historically, this stance has also raised a number of extremely radical political demands, especially by the 5BL community (see Bory et al., 2022b), such as the abolition of the Italian Medical Association and the pluralisation of health and healing models, that is institutional

<sup>3</sup>Te Ramazzini Institute was founded in 1987 as a non-proft social cooperative and engages in developing strategies with which to monitor tumours and other environmental non-communicable diseases.

recognition of refused knowledge (D'Amato, 2020). Tese demands are supported by the conception that the public health authorities have gradually replaced 'evidence-based medicine' with 'eminence-based medicine'. According to the RK claim-makers, this biomedicine governance transition is the result of a growing devolution of public health responsibilities by formal state apparatuses—potentially transparently auditable by concerned groups of citizens—to (quasi)autonomous regulatory bodies (e.g. bioethics committees, medical associations, and institutional expert task forces) and private corporations over whom the only controls are economic benchmarks and budgetary tools. Te critiques advanced by RKCs to the professional structure of the current biomedical landscape can be framed as a specifc political stance aimed at dismantling the hierarchical relationship between scientists, medical health workers, and citizens.

Although academic circles and public decision-makers—especially those infuenced by post-truth theories (see Ball, 2017; D'Ancona, 2017; Davis, 2017)—have described RKCs as actors whose ideological glue is the rejection of reason, rationality, scientifc expertise, objectivity, and democratic values, this reading can be seen as of limited usefulness in understanding the conditions and modalities by which credibility is conferred on refused knowledge. Rather than a prejudiced rejection of science, RKCs have raised relevant questions as regards the demand for public participation and the extension of deliberative mechanisms within domains traditionally subject to the jurisdiction of institutional experts, their clearly anti-establishment stance notwithstanding. In this respect, recurrent calls for people to perform their own experience-based research are primarily a matter of demarcating the boundary between 'communities seeking the truth' and a 'corporatised biomedical establishment' and involve RKCs and their followers demanding a people- rather than proftcentred approach to public health.4

From the starting point of accusations of paternalistic exclusion of ordinary people from an active role in the healthcare system, RKCs

<sup>4</sup>Although claim-makers criticise those they see as profting fnancially from speculating on public health, it is worth noting that they themselves sometimes operate as economic agents in search of revenues in their dissemination of refused knowledge (e.g. private consultancy work, book sales, fees for attending teaching events).

outline a range of solutions designed to orient the work of professional healthcare workers and scientists. Tey argue that the scientifc for-proft research style based on the private sector and corporations should be replaced by a more public search for knowledge engaging a range of subjects and experiential expertise. RKCs seek to challenge what they see as the political and economic underpinnings of biomedicine and its exclusion of people from the management of their own wellbeing, which remains the exclusive preserve of corporate biomedical elites. Te demystifcation of the political and economic interests surrounding the professional stance embedded in the biomedical politics of life is thus critical to publicly legitimising refused knowledge:

Not believing the dogmas of ofcial medicine is simply not seen as possible. Te absolute usefulness of ofcial medicine is paralleled with the usefulness of essential infrastructures, such as water supplies, sewers, roads, schools. We are more or less free to treat ourselves with alternative methods, but we are not free to refuse to pay for the ofcial medical system, or to refuse to submit to its rules.

(Quotation from a blog by BL3, June 12, 2021)5

From this perspective, RKCs' attempt to challenge the institutional political decision-making domain on the grounds that health professionals' formal rules are detrimental to public health. Tey question such rules rather than merely identifying the responsibilities and biases of individual health professionals and research scientists. Tey also claim that—even when it appears neutral and objective—the public health political decision-making embedded in the politics of life actually conceals rationalities that do not serve people's, or society's, wellbeing. Tis point is signifcant as regards the process by which refused knowledge is accorded credibility and legitimacy, since RKCs believe to be engaged in a struggle aimed at ensuring that the healthcare system's shortcomings are tackled for the sake of society.

Overall, a twofold strategy emerges from an analysis of the second critical dimension of the institutional politics of life. Te frst of these is oppositional and concerns identifying an 'enemy', that is an object or

<sup>5</sup>Te full article can be accessed here: https://usciredallorrore.wordpress.com/2021/10/19/ dittatura-medica-riconoscerla-per-combatterla/

(collective) subject to blame for what has been institutionally constructed and/or is perceived as a problem for individual and public health. For instance, the 'World Health Organization–Big Pharma–national health institute' alliance is blamed for the founding of a politics of life regime that does not serve people's fundamental rights and wellbeing. A second strategy concerns identifying people themselves and interaction between peers as alternative sources of truth as regards research into living bodies and the production of dependable wellbeing management knowledge. Tese two strategies outline an alternative approach to healthcare and knowledge practice, since they encourage people who feel that their health issues and concerns are being neglected by the biomedical establishment to mobilise their own experiential expertise in the search for new evidence collectively. In so doing, RKCs are attempting to demarcate a boundary between their own search for the truth, and that of political elites, biotech corporations, and subjugated health professionals.

### **7.4 Uncovering (Allegedly) Hidden Truths in Challenges to the Politics of Life**

Tis chapter has highlighted that the processes involved in according legitimacy and credibility to a body of refused knowledge are closely bound up with critical discursive production targeting the politics of life. Tis critique orients the collective commitment to action in the construction of refused knowledge whilst also working to enhance the credibility and legitimacy of such knowledge. In fact, in the critical scrutiny of the epistemic, professional, and political knowledge production and mobilisation status quo, RKCs question the ways governmental bodies, biomedical agencies, and the scientifc community control, manage, and reshape human beings' biological components and value as living bodies. Te shaping and legitimising of a corpus of refused knowledge is intertwined with a twofold critique of the institutional politics of life relating, on one hand, to the scientifc and technological arrangements and, on the other, to the political and professional framework underlying its practical exercise. Generally speaking, RKCs view the institutional politics of life as an ensemble of epistemic conventions, regulatory tools, and professional and political arrangements designed to exclude individual agency from healthcare decision-making. Dominated by a colluding coalition of biotech corporations, political elites, and medical authorities, the politics of life, RKCs argue, reproduces power asymmetries between health experts and citizens, for the primary aim of pursuing its own profts, and is thus inherently incompatible with the collective good. From this perspective, not only do RKCs argue for the need to accord individuals a greater say in the management of their own wellbeing—thereby questioning the biomedical practitioner monopoly over health matters—but they also question the scientifc, technical, professional, and political conditions by which biomedical knowledge is produced and rendered actionable in everyday life. Accordingly, they argue that other kinds of facts, evidence, and expertise, such as experience-based facts, must be recognised. Although RKCs are publicly stigmatised for disseminating hoaxes and fake news (Farkas & Schou, 2018), the production of refused knowledge can also be alternatively (and less normatively) interpreted as a search for experiential truth. Teirs is, in fact, direct empiricism based on individual experience rather than formal laboratory-based protocols. By mobilising their experiential expertise, sometimes in alliance with independent scientists, RKCs consider themselves to be engaged in uncovering hidden truths concealed by the biomedical establishment and political elites and their followers thus undertake experience-based research on their own bodies and minds with a view to producing and testing the trustworthiness of facts and evidence neglected or rejected by institutional biomedicine.

If we consider the importance accorded to experiential expertise, it is clear that RKCs' followers testing a body of knowledge for themselves is an epistemic strategy by which they see themselves as speaking the truth about health and illness issues. For example, RKCs engaged in a collaborative elaboration of the COVID-19 pandemic through self-disclosure practices—mainly on digital platforms (see Crabu et al., 2023)—involve sharing personal health information with others and making sense of the policy decisions of biomedical agencies and political decision-makers (e.g. lockdowns and compulsory vaccination) seen as distant from their everyday empirical experiences.

Here, it is worth highlighting that refused knowledge claim-makers' suspicion of laboratory-based research, computer-based simulations, and clinical trials as determinant procedures in the alignment of the normal and the pathological is bound up with holistic assumptions, together with a principle that individuals cannot be reduced to general nosological classes. One of RKCs' criticisms of the institutional politics of life is that biomedical research is founded on the idea that, biological specifcities notwithstanding, individuals have sufcient common biological features for the same symptomatology or diseases to be addressed in the same way. By contrast RKCs argue that, similarities between individuals notwithstanding, people displaying the same symptomatology may need treatments to be specifcally tuned to their own idiosyncratic experiences, both bodily and psychologically. Tus, RKCs do not regard experiential expertise merely as an epistemic approach to knowledge but also as a strategic relational resource with which to legitimise their refused knowledge in the public domain by placing individual specifcities centre stage in their healing models. Indeed, RKCs commonly focus on individual descriptions of cases of 'successful' healing rather than 'abstract' statistics and models, when trying to persuade others of the efectiveness of their refused knowledge.

In sum, in questioning the politics of life, RKCs are attempting to break down institutional expertise boundaries with other kinds of expertise, not simply afrming new sorts of facts, evidence, and healing models but also attempting to question the health regulatory decision-making process. Hence RKCs' approach to knowledge, whilst refused by the scientifc community, demonstrates a perspective to individual and public health which is on the margins of a biomedical establishment accused of acting more or less covertly for its own gain and mostly to the detriment of the public good. Here, it is important to highlight a point that may be worthy of attention from future researchers: although RKCs are actively engaged in disputing the current institutional politics of life status quo, their main health and wellbeing focus is actually the individual rather than the collective level. Indeed, it should be noted that whereas RKCs share a general propensity for social change, especially concerning the authoritative position of scientists and healthcare professionals in society, they do not share a ready-made, authoritative set of political arguments or a general theory of social transformation. Terefore, what they tend to outline and hope for is a sort of individual struggle to free ourselves of what they see as the illegitimate power exerted by the state in cahoots with industrial conglomerates, rather than a collective transformation of power relations between citizens and what they call the biomedical elites.

#### **References**


**Open Access** Tis chapter is licensed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/ by/4.0/), which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence and indicate if changes were made.

Te images or other third party material in this chapter are included in the chapter's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the chapter's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder.

# **8**

# **"This is the real face of Covid-19!": How Refused Knowledge Communities Entered the Pandemic Arena**

**Barbara Morsello, Federico Neresini, and Maria Carmela Agodi**

# **8.1 Introduction1**

Te Covid-19 pandemic was an unprecedented global health crisis which promoted a generalised process of knowledge production and storytelling, by both institutional experts and lay people, devoted to fnding a way of preventing the virus spreading and understanding what was

B. Morsello (\*)

F. Neresini

M. C. Agodi Department of Political Science, University of Napoli Federico II, Napoli, Italy

<sup>1</sup>Te chapter has been conceived and discussed by all the three authors. In compliance with Italian academic folkways, Barbara Morsello, Federico Neresini and Maria Carmela Agodi acknowledge that the former wrote paragraphs 8.3 and 8.4, Federico Neresini wrote the paragraphs 8.2 and 8.5 and Maria Carmela Agodi wrote paragraphs 8.1 and 8.6.

Department of FISPPA, University of Padova, Padova, Italy e-mail: barbara.morsello@unipd.it

Department of Philosophy, Sociology, Education and Applied Psychology, University of Padova, Padova, Italy

happening. Especially during the initial phase of great uncertainty, the health policies adopted by governments fostered public contestation, in which context the RKCs gained a prominent place on the public sphere. Using RKC jargon, these forms of public contestation were designed to uncover the 'real face of the Covid-19 pandemic', i.e. the weakness of the interpretations provided by the public institutions and science along with the potential for alternative explanations, and therefore of diferent policies to cope with the problematic situation created by the virus.

To increase our understanding of RKC engagement in the public controversy around the pandemic we performed digital ethnography (Hine, 2000; Hine, 2004; Marcus, 1995; Marres & Moats, 2015) during the frst months of the Covid-19 outbreak in Italy, with the aim of analysing how the health emergency created the conditions for RKCs to act collectively to oppose the mainstream narratives and policy measures adopted by the public institutions and supported by scientifc experts, as well as ofcial media. Te data gathered was organised into social world maps (Star, 1989; Star, 2010;Clarke, 2003; Clarke & Star, 2008) designed to analyse (1) the key-actors involved in the RKCs' social worlds and the contestation arena; (2) the relationship networks between key-actors and the evolutions in these; and thus (3) how both the composition of the networks and the connections between key-actors changed over time.

Observing the evolution of RKCs over time provided a valuable perspective with which to understand the mobilisation of refused knowledge within sense-making processes and its implications in reshaping the relationships between RKCs in the pandemic arena. In particular, it enabled us to analyse the pivotal role played by the heterogeneous actors who actively contributed both to facilitating alternative understandings of the pandemic between lay people not fully convinced by the prevailing interpretation and to spawning new social worlds in which diverse RKCs progressively coalesced in the pandemic arena.

Tese key actors can be grouped into three main categories: nonhumans (the virus and the array of new objects the pandemic put in the forefront, such as, e.g., face masks and vaccines), the RKCs' experts, and those of their 'enemies'—namely science and public institutions—who they treated as 'impostors'. Te objects which acquired new meanings within the pandemic context can be labelled 'pandemic objects', while 'impostors' (Woolgar et al., 2021) is the defnition given by RKCs to scientifc experts, especially those considered part of the 'academic elite' which supported and validated the mainstream interpretation of Covid-19 as a global health risk for the entire population. From the RKCs' perspective these experts—scientists or scientifc institutions—were to be considered *impostors* because they legitimised lockdowns and other anti-Covid measures interpreted as benefcial to pharmaceutical companies and/or a state strategy to increase its control over citizens.

In summary, this chapter examines how refused knowledge —i.e. the counter narratives employed by RKCs to dismantle the prevailing Covid-19 pandemic narrative— fostered favourable conditions for the emergence of new alliances between RKCs, leading to their collective engagement in contesting institutionalised health policies.

#### **8.2 Dealing With Competing Narratives and Actors in the Public Covid-19 Pandemic Arena**

Competing narratives regarding the outbreak of Covid-19 succeeded one another in the early stages of the emergency. During this period, the stringent policies implemented by the Italian government to contain the virus attracted frequent criticism, both in Italy and, at times, abroad (Viola, 2022).

Various actors including scientifc experts, institutions and the mainstream media occupied the public scene but were not always efective in providing clear and convincing explanations of what was going on. At these uncertain early stages, but also throughout the whole Covid-19 pandemic, a key refrain repeated constantly by most institutional leaders was 'follow the science' (Pérez-González, 2020; Stevens, 2020), a claim which made science synonymous with truth, objectivity and evidencebased rationality. 'Follow the science' was thus the Covid-19 mantra (Saford et al., 2021), extensively used by institutional spokespersons and politicians (Crabu et al., 2021). However, an increasing number of people began to see all mainstream information circulated by public institutions and their experts as partisan (Desta & Mulgeta, 2020; Prasad, 2021). Tese people generally embraced a wide spectrum of refused knowledge involving both 'doing their own research' (Attwell et al., 2018) on the web and forming relationships in their everyday lives with others who 'think like them'. Tis process led to a juxtaposition of pandemic discourses in which the science-based evidence and institutional experts were opposed to the so-called conspiracy theories and fake news (Bisiada, 2021). Social media played a pivotal role in polarising public discourse (Zollo et al., 2015) in 'quarantined society' (Aiello et al., 2021) by amplifying the divide between what was considered *refused knowledge* and *science*. Social media also played a fundamental role in organising dissent (Pavan & Felicetti, 2019) around the ofcial interpretation of Covid-19 and counteracting anti-Covid norms by fostering the organisation of the public demonstrations that flled Italy's main squares in 2020 and 2021. Tese protests, however, were not only an expression of discontent regarding public policies but also an attempt to promote an alternative vision of the pandemic supported, shaped and circulated by RKCs. To increase our understanding of the ways various RKCs connected into new social worlds opposing science and institutions within the pandemic arena, we focused on the discursive practices employed in online interaction settings (from Facebook groups and pages to related blogs and YouTube channels—populated by the main Italian RKCs; see the Introduction to this volume).

In view of the pandemic's evolution in Italy, we organised our online ethnography, during the onset of the emergency in Italy into three main phases (Table 8.1).

Te frst phase (T1) was characterised by profound uncertainty within RKCs as the outbreak of the virus disrupted any possible interpretative framework, giving rise to concerns and doubts.


**Table 8.1** Observation periods related to the outbreak of Covid-19 in RKCs in Italy

#### **8 "This is the real face of Covid-19!": How Refused Knowledge…**

During total lockdown (T2) the public institutional explanations and health recommendations were seen as increasingly less convincing to the RKCs. Concurrently, this set the stage for the building of alternative knowledge and the defning of new action plans. Within these processes, some individuals gained credibility and were progressively recognised by the RKCs as authoritative experts. Moreover, a wide range of nonhumans, including the virus and other pandemic-related objects such as face masks, drugs, epidemiological data and tests (hereafter *pandemic objects*) were reinterpreted by RKCs as enemies or allies. For instance, Covid-19 tests were seen by many RKCs as both an instrument of social control serving the interests of the state and the establishment and a necessary travel and work measure or to avoid lockdowns.

Tus, during the third phase (T3) some key-actors played a decisive role in promoting public action. Tis occurred when the identifcation of shared experts and adversaries by diferent RKCs created the conditions for public mobilisation. Consequently, the formerly isolated RKCs generated new social worlds capable of actively engaging in the public sphere to promote 'their truth'.

A consideration of these three phases was then the basis for an analysis of the way Covid-19 and the related pandemic objects opened up new contestation possibilities, with digital ethnography clearly showing that the RKCs dealt with this uncertainty by turning to their own experts as knowledge providers even if this knowledge was strongly refused by the scientifc institutions and medical agencies and then scapegoated by the mainstream media. Signifcantly, pandemic objects were key-actors, especially during the frst phase, becoming a matter of mutual concern for RKCs and fostering communications and alliances between them. Tis favoured the advent of the RKCs' experts as new epistemic resources with a view to making sense of the pandemic and organising RKC 'resistance' against institutional power supported by scientifc experts. It was in the wake of this that scientifc exponents became *impostors* for RKCs, i.e. common enemies embodying everything the RKCs were opposed to. Framing scientifc experts as impostors, moreover, was part of the reciprocity process (see Chap. 1) by which RKCs legitimised their experts as the only sources of knowledge which could be trusted.

In phase two (T2), RKC experts and institutional spokespersons labelled as *impostors* began to play roles that can be analytically denominated 'boundary objects' (Star & Griesemer, 1989) as they were 'plastic enough to adapt to local needs and constraints of the several parties employing them, yet robust enough to maintain a common identity across sites' (ivi, p. 393). STS have underlined the importance of boundary objects during emergencies and crises (Tim et al., 2013), as a set of socio-material arrangements existing between social worlds and helping to facilitate communication between them (Bowker et al., 2015; Star & Griesemer, 1989). Once the opposition between RKCs' experts and impostors was established, the refused knowledge interpretation of the pandemic was strengthened and common ground between RKCs by which new social worlds challenged institutional authority was identifed (T3). Furthermore, pandemic objects also played a pivotal role in this phase, embodying the narratives employed by the RKCs' experts and facilitating the interactions between diferent RKCs, thus catalysing dissent in new social worlds, at both national and local levels.

### **8.3 Pandemic Objects and Their Counter Narrative**

During the Covid-19 pandemic many new—or newly framed—objects made their appearance in our everyday lives: masks, vaccines, antigenic and molecular tests and tracing apps, along with web platforms and social media to disseminate information.

Te pandemic object discourses that circulated on social media in particular—a favourable vantage space on which to share experiential knowledge (Bory et al., 2021; Van Zoonen, 2012)—were fundamentally important in fostering the emergence of counter narratives regarding Covid-19. Memes, posts, images and instructions on the use of tests, e.g., were common tools employed by RKCs with a view to making sense of Covid-19. As de Saint et al. (2022) have shown, during the pandemic meme production and circulation increased exponentially and this was often associated with hyper-polarisation, online activism and the distribution of huge amounts of contradictory information, some of which was rejected as fake news by institutional actors. By analysing the memes and posts employed by RKCs in shaping their Covid-19 pandemic narratives, e.g., it can be observed that face masks were seen right from the outset as symbols of the subjugating power of the institutions and thus occupied an important position within RKCs' sense-making processes (see Figs. 8.1 and 8.2).

For example, from the very outset of the pandemic face masks attracted the attention of the Pro-vaccine choice and Stop 5G RKCs as embodiments of social control. Face masks—considered to protect against contagion in the ofcial view—were, for RKCs, symbols of the state's attack on freedom of speech, like a gag over people's mouths. For RKC followers, face masks thus weakened people rather than protecting them. Tis interpretation was shared by 5BLs and Alkaline Water RKC followers. Tis latter, moreover, depicted the use of face masks as a serious threat to public health, since people wearing masks breathe in their own carbon dioxide. Some RKCs' experts pointed out this danger for children in particular, thus creating common ground between Alkaline Water and Provaccine choice RKCs always interested in children's health.

Another pandemic object that played a signifcant role was the contacttracing app Immuni introduced by the Italian Government as a voluntary Covid-19 infection case tracking measure. Te app used Bluetooth technology to alert users exposed to infected people, even if they were asymptomatic. During the lockdown (phase T2) in particular, whilst the app was presented as a possible way out of social confnement, it was reinterpreted by the RKCs' experts as key to a heated public personal data security debate. Te RKCs' experts depicted the app—like the face mask—as a controlling strategy wielded by the government to obtain personal information on citizens. During T3, Immuni was thus a crucial issue in many public demonstrations across various RKCs. Hence, after the Immuni app was launched on 1 May 2020, a digital strike2 promoted by Stop 5G was supported and widely disseminated by the Pro-vaccine choice movement, too, as this post shows:

<sup>2</sup>Te digital strike consisted of 24 hours of disconnection from all digital platforms.

**Fig. 8.1** 'The business of terror': face masks as symbols of how the fnancial profits of the Big Pharma is prioritized over people's health, editorial paper published on the Corvelva Association website. (Source: https://www.corvelva.it/en/specialecorvelva/papers/pandemia-il-business-del-terrore.html)

**Fig. 8.2** Face masks as symbols of social control. Reworking by the authors of a meme used on a Pro-vaccine choice RKC's Facebook page on 31 January 2020

Te government will impact on the freedoms and lives of every Italian through 5G, artifcial intelligence, digitalisation and robots, undermining even inviolable constitutional rights. Te Immuni app, digital schools, smart working, permanent and ubiquitous hyperconnection, the installation of at least one million new telephone antennas and the irradiation of all Italians with risky radio frequencies, non-ionising waves and possible carcinogens will have the same efect. … Te best answer? Join the DISCONNECTION DAY, the European digital strike day promoted by the European and Italian Stop 5G Alliance. (23/04/2020 Transcription of a Stop 5G Community re-post on a Pro-vaccine choice Facebook page.)

Te post reported above shows that the Immuni app was framed by RKCs as a tool serving the social control role embodied by other pandemic objects including face masks and soon became a shared Stop 5G and Pro-vaccine choice concern. Immuni efectively has been interpreted both as restrictions on people's freedoms and as a health danger: the Stop 5G RKC, in fact, considered Immuni dangerous because it implied constant use of mobile phones and hence exposure to electromagnetic waves.

Te alleged harmfulness of the app thus elicited new alliances between RKCs against the Italian government with supporters refusing to download the app and organising meetings with their experts about the risks associated with using it. Furthermore, the four RKCs also worked together to fnd ways of staying healthy in a more "natural" way and not getting vaccinated when the vaccine—i.e. the solution most favoured by public institutions as a way out of the pandemic—became available. In this context, Hyperimmune Plasma Terapy (HPT) soon became a sort of RKC Holy Grail. HPT was an experimental therapy introduced during the frst stages of the pandemic in Italy based on people with Covid-19 being inoculated with blood samples containing antibodies from people who had recovered from it to counteract the virus. From the RKCs' point of view, this therapy embodied the positive value of "natural healing", as a "people to people cure" contrasting with ofcial medicine and of course the vaccine, both perceived as artifcial entities produced mainly for fnancial proft by pharmaceutical companies. For RKCs, in fact, the distinction between "natural" and "artifcial" is what demarcates the boundary between the knowledge they trust and institutional science (Gieryn, 1983; Greenhalgh & Wessely, 2004; Gross et al., 2015). Its "naturalness" makes HPT a more reliable treatment in the RKCs' view, because it refects the principles of "pure" medicine working for the good of the people, rather than the economic interests of Big Pharma. News, posts and videos regarding the benefcial efects of HPT and its "low cost" for people afected by Covid-19 spread like wildfre among RKC online groups.

Hence, in March 2020 HPT become a new pandemic object and a controversial issue in the public sphere at the centre of an epistemic battle between those who supported its validity—such as certain physicians and Pro-vaccine choice adherents—and those who later denied its efcacy, such as the Health Ministry and medical public institutions. However, this was not a linear process: initially, people recovering from Covid-19 were invited for blood donations even by health institutions for care or clinical trial purposes.3 Later, several studies confuted the efectiveness of the therapy4 but leading RKC experts still explained how the therapy works and why it was to be considered a valid treatment against the virus instead of artifcially created vaccines, as this online post shows:

Friends, today too we have good news: the treatment exists and costs next to nothing. It is called hyperimmune plasma. Prof. Giuseppe De Donno— Head of Pneumology at Carlo Poma Hospital in Mantua—commented on the radio: "At the moment, plasma is the only specifc drug against Covid". But instead of congratulating and sharing the excellent news, Burioni, the ofcial voice of the mainstream networks, replied that plasma has limits. Along the lines of, 'let's dampen enthusiasm and, above all, snuf out the hopes of the millions of Italians who have been locked in their homes for two months! Better keep telling them to walk around like zombies in dirty masks and gloves.' [Burioni and his colleagues] are not experts or scientists who insist on their politics of terror. (4/05/2020 Transcription and translation of a Pro-vaccine choice Facebook post)

Meanwhile, RKCs continued to support HPT as a "symbol of democracy", frstly by Pro-vaccine choice supporters, and then by other RKCs as a low-cost solution to the Covid-19 pandemic. Hence, HPT, like face masks and the Immuni app, fostered new connections between RKCs, especially after the suicide of De Donno, the physician who supported the therapy's validity, a highly important development because the doctor-as-martyr-ignored-by-ofcial-science concept is a recurring theme in RKC narratives (see Chap. 4).

During our digital ethnography memes were also of use in increasing our understanding of the impact of pandemic objects for RKCs and in shaping their Covid-19 concerns (see Fig. 8.3).

<sup>3</sup>Tere were many calls for blood donation, e.g. the National Center of Blood Donation in Italy: https://www.avis.it/wp-content/uploads/2020/06/Prot.-n.-1296.CNS\_.2020\_Donazione-diplasma-da-convalescente-COVID-19.pdf (28 December 2022) or that of the Ministry of Health: https://www.donailsangue.salute.gov.it/donaresangue/dettaglioNotizieCns.jsp?lingua=italiano&ar ea=cnt&menu=newsMedia&sottomenu=news&id=33.

<sup>4</sup>Te largest study in Italy was the Tsunami study: https://www.aifa.gov.it/en/-/covid-19-studiotsunami-il-plasma-non-riduce-il-rischio-di-peggioramento-respiratorio-o-morte.

A popular meme illustrates the idea that these new objects, now part of "quarantined society" everyday life (Aiello et al., 2021; Bisiada, 2021) had confgured a new citizen subject to constant control by apps and wearable devices, made obedient by masks and thus perfectly integrated into surveillance society (Fig. 8.3). Pandemic objects thus prefgured not only a specifc idea of the future but also new forms of biocitizenship (Petrakaki et al., 2021; Rose & Novas, 2005) which RKCs attempted to defend themselves against. However, whilst all the RKCs analysed pursued a specifc idea of alternative care (Crabu et al., 2022) and citizenship

**Fig. 8.3** Reworking by the authors of a Pro-vaccine choice RKC's Facebook meme, 26 May 2020

(Morsello & Giardullo, 2022), prior to the pandemic they had focused on the various objects embodying their visions and claims (vaccines, 5G, alkaline water, biological laws). Pandemic objects, on the contrary, provided an opportunity for RKCs to build their own truths regarding Covid-19 and beyond, thereby contributing to mobilising experts and identifying common enemies.

#### **8.4 Building Alliances, Organising Dissent: Experts and Impostors as Boundary Objects**

During the health crisis scientifc experts were the most reliable and trusted actors in Italy and their advice was taken extremely seriously (Capano, 2020), playing a pivotal role even in policy-making terms (Neresini et al. 2023). However, experts were also the subject of controversy over pandemic management based on the available scientifc knowledge (Lavazza & Farina, 2020) and this was the context in which they were framed as impostors by RKCs.

Our online ethnography also showed that the RKCs identifed their own experts, of importance not only in providing actionable knowledge coherent with the interpretative frameworks on which RKCs rely, but also fundamentally strategic to demarcating the boundaries between reliable knowledge and partisan information, i.e. that provided by impostors. Two main experts—Professors Stefano Montanari and Luc Montagnier, who played the strategic role of boundary objects as they shaped and promoted a specifc interpretation of the Covid-19 pandemic among RKCs—can be identifed. Te narrative promoted by these experts was fexible enough to adapt to RKCs that were separate social worlds prior to the pandemic and could be used to support their individual claims. Te fact that both Montanari and Montagnier possessed academic credentials (such as PhDs or research grants, even a Nobel Prize in Montagnier's case) was considered signifcant by RKCs in their challenges to the epistemic authority of impostors, capable of simultaneously ofering a cohesive version of the pandemic emergency congruent with RKCs' approaches to health and well-being.

It is worth noting, in fact, that expert status is not simply a matter of professional qualifcations (Stehr & Grundmann, 2011; Nowotny et al., 2001; Gibbons et al., 1994) but also of attribution processes enabled by people and communities. Tose recognised as experts provide useful answers to relevant questions (Collins & Evans, 2007; Martin, 1991; Peters, 2008), thus setting priorities for action (Grundman, 2017) as happened during the Covid-19 pandemic when uncertainty around the virus needed to be responded to.

Stefano Montanari, e.g., is a qualifed pharmacist who founded the Nanodiagnostics Lab and his thesis regarding the potential risks of vaccination has made him well-known in Italy despite this having been critiqued by ofcial experts and institutions. During the lockdown in Italy (T2) he described Covid-19 as "a fu virus" with low pathogenicity that would not normally cause death. Montanari further explained that it was extremely infectious but harmless, with no symptoms in the majority of people. He assumed that virus mortality was very low, especially for young and healthy people, attributing the high death rates to wrong classifcation by ofcial health institutions failing to distinguish between those dying of the virus and those dying of other causes whilst testing positive for the virus. Terefore, some videos circulated online by the various RKCs argued that the institutional pandemic data was intentionally overestimated to justify the government's anti-contagion measures, ranging from lockdowns to social distancing, face masks, tests and apps. Tese measures were described by Montanari as mere tricks to enhance people's willingness to accept control. Scientifc community intervention was required to reject this hypothesis and encourage the public to accept the mainstream explanation of the pandemic. However, it was precisely for this reason that Montanari became a sort of "world human heritage" for RKCs (28/04/2020, to paraphrase an AW Facebook post) because his interpretation contributed to empowering RKC members against vaccination policies.

Another expert mobilised by RKCs in their attempts to ofer interpretations of pandemic objects capable of combating the public version was Luc Montagnier, winner of a Nobel Prize for Medicine, ostracised by the scientifc community in recent years for his controversial theses on various issues concerning human health. Montagnier proposed an alternative to vaccinations and quarantine consisting of boosting immune systems with fermented papaya and glutathione and avoiding contact with infected people. Tese recommendations attracted RKCs' attention through specifc YouTube videos and Facebook posts, on the strength of their tendency to look for online health information.

Moreover, regarding the origin of COVID-19, Montagnier mooted the possibility that it may have originated in a laboratory in Wuhan, China, and not in a wet market, as previously described in ofcial reports5 during T1:

Even if it is assumed that the virus came out of a military laboratory, it is also true, data in hand, that its mortality is less than a ridiculous seasonal fu. In the last 4 years, the fu has killed over 68,000 people in Italy, but despite these important fgures, no one has ever dreamed of blocking entire cities with soldiers and police or closing hospitals and schools for several days. Why did the unthinkable happen this time for a handful of those dead, almost all very old and/or very sick? Do they want to mentally get us used to a police state, testing to what extent we are willing to give up our freedoms? (29/2/2020, Transcription and translation of a video posted in a Pro-vaccine choice online community)

His hypothesis became an integral part of RKCs' narratives during the lockdown (T2) and throughout the reconfguration of RKC relationships.

Summarising, then, Montanari and Montagnier argued as follows: (a) Covid-19 works like a fu virus and is thus not dangerous for most people; (b) it originated in a Chinese laboratory and the public action taken to prevent it spreading are excuses for state social control; (c) people can overcome the virus through self-care and by keeping informed. Tis "truth", as it was considered by RKCs, became a useful resource for those challenging the epistemic authority of science (Harambam & Aupers, 2015; Rosenfeld, 2021) and counteracting institutional health policies such as wearing face masks, being vaccinated and social distancing.

<sup>5</sup>Today ofcial sources are "moderately confdent" that the virus may indeed have come from a laboratory: https://www.theguardian.com/world/2023/feb/26/covid-virus-likely-laboratory-leak- us-energy-department (Last access: 02/03/2023).

It thus might be said that pandemic objects triggered RKC experts' action, enhancing the visibility of RKCs' shared interpretations of the pandemic, showing that an alliance was possible. Both Montanari and Montagnier, and their counterpart the impostors, played a leading role in reconfguring relationships between RKCs because these latter nurtured, shaped and circulated an understanding of the pandemic which RKCs could fght, with a view to disclosing the "real truth" behind the health emergency.

During the transition from the latency phase, during lockdown (T2), to the end of lockdown, when RKCs collectively contested the anti-Covid norms and fought for their truth in the main Italian squares (T3), three main impostors occupied a prominent position, i.e. two health institutions, the World Health Organization (WHO) and Italian Institute of National Health in Italy (INH), and an individual, Professor Roberto Burioni, Italian virologist and immunologist. Burioni, WHO and INH were seen as impostors by RKCs frstly because they were viewed as embodying scientifc institutions representing the state and, secondly, as they were a constant presence in the traditional media. In fact RKCs distrust newspapers and television, preferring other information sources such as the web, blogs and self-vindicated independent TV channels such as Byoblu (see below).

Moreover, RKCs maintain that one of the ways impostors infuence public opinion is through data manipulation. Tus, in the initial Covid-19 phase (T1), RKCs accused the WHO both of providing false epidemiological data and of describing the virus as a serious threat and a global danger, while in their view it was simply a fu outbreak. Terefore, one of the strategies adopted by RKCs to refute the mainstream interpretation was "revealing" of how data is manipulated by impostors:

Te WHO data did not take into account asymptomatic cases of Covid-19 or cases in which symptoms were minimal. In other words, as there were many mild cases of Covid-19 that went undiagnosed because many people did not go to the hospital to be tested, diagnosed and reported, it was hard to come up with a reasonable estimate of how lethal Covid-19 was when compared to other infections. Experts disagreed with the WHO's death rate, claiming that the true rate was much lower. (23/03/2020, Transcription and translation of a post circulated on a Pro-vaccine choice Facebook page)

Te RKCs challenged the epistemic authority of science by formulating alternative accounts of the "real truth" and "what's behind it", resisting the "truth regime" through which science is accorded "the legitimate power to defne, describe, and explain domains of reality" (Gieryn, 1999, p. 1). Tere is nothing accidental about the fact that another strategy to fght those considered impostors is undermining their epistemic authority by comparing various sources or by contesting their research methods:

Attention: Te WHO statements and the consequent decrees issued by the Council of Ministers (DCPM) are not based on scientifcally proven facts! We invite you to carefully read this statement by Fabio Franchi, a physician specialising in hygiene, preventive medicine and infectious diseases. (22/04/20, Transcription and translation of a 5LB Facebook post)

Te INH was also consistently challenged in these terms by the RKCs for its pandemic data. In particular, the RKCs not only contested how such data was collected but also delegitimised the anti-Covid-19 norms, by reframing the adoption of the face masks as a health risk, as the post below clearly shows:

Te INH has just published a paper on the virus's survival time on various surfaces. It is interesting to note that it survives 4 days inside masks and 7 days in its outer layer. Now they will fnally fnd out that the masks they use and reuse for several days to save money are teeming with bacteria, fungi and other known pathogens. It is no coincidence that there is not a single scientifc reference on the WHO website certifying the usefulness of protection from viruses! (24/05/20, Transcription of an AW Facebook post)

Another strategy countering impostors is stigmatising them, as in the case of Burioni. Te RKCs even coined the term "Burionismo" for a specifc way of thinking defned as populist, anti-scientifc and authoritarian—a sort of "(ofcial) medical populism" (26/03/2020, to paraphrase a 5BLs Facebook post):

*Burionismo* is the greatest harm of the last Italian decade. Years of brainwashing have led us to where we are now. But the scientifc community is anything but Burioni-esque. Slowly, in the coming weeks, the real scientists will poke their heads over the parapet, and I hope there will be a showdown. (12/03/2020, Transcription and translation of a 5LBs Facebook post)

Since then, the name "Burioni" has become a label stigmatising the RKCs' enemies: people perceived as arrogant and socially dangerous, acting corruptly in favour of pharmaceutical companies for personal popularity and proft motives. At the same time, "epistemological suspicion" or "the belief that claims to truth and knowledge are tied to particular social and material interests" (Van Zoonen, 2012, p. 56) were highly prevalent among members of Pro-vaccine choice and Stop 5G, and their visibility increased even further during T3, including in AW and 5BLs. Of course, views on experts and impostors vary from one RKC to another, but this does not limit their chances of being recognised as relevant actors and a shared resource. Tey can, thus, be considered to be boundary objects.

At the same time, RKCs' experts and impostors acted in reference to non-humans, i.e. frst of all the virus and many pandemic objects, which allowed them to set aside their diferences and shine the spotlight on their role as a useful asset in RKC strategies to refute the mainstream interpretation of the pandemic and its public social control function. From this perspective it might be said that pandemic objects acted as brokers, i.e. as actors giving RKCs the chance to form new relationships and collectively fght the state.

#### **8.5 The Rise of New Refused Knowledge Social Worlds in the Pandemic Arena**

After the Covid-19 lockdown, Italy's main squares crowded with public demonstrations in which the new RKC alliance's demands for the end of the "state of emergency" (from lockdown T2 to the softening of anticontagion laws T3, see Fig. 8.4) played out. Tese protests were promoted frst by the so-called no-mask movement and then by the "no-green

**Fig. 8.4** From separate RKCs to a new social world within the pandemic arena

pass6 " movement, resulting from a process which reconfgured relationships between RKCs and spawned new social worlds such as R2020 (T3). As we have seen above, in fact, pandemic objects, experts and impostors played a pivotal role in building a new alliance between RKCs to counteract the ofcial version of the Covid-19 pandemic and organising dissent. Tese heterogeneous actors played a central role in contesting mainstream narratives and the health policy measures adopted by the government, thus fostering new opportunities for collaboration between RKCs.

Burt's (2004) "brokers" and "structural holes" concepts are of use in increasing our understanding of this reconfguration process. Structural holes are "voids" between relational clusters (i.e. RKCs in our case), whereas brokers are defned as nodes establishing new ties between these clusters, building new connections and consolidating existing relationships.

Indeed, what we observed is that initially distinct RKCs (T1) began to draw closer together when the SARS CoV-2 virus and pandemic objects such as masks, Immuni, vaccines and tests progressively occupied the

<sup>6</sup> "Green pass" refers to the COVID-19 green certifcation—EU digital COVID certifcate—proposed by the European Commission to facilitate the safe free movement of citizens within the European Union during the Covid-19 pandemic.

relational gaps between these social words (T2), opening up new windows of opportunity for both experts and impostors to enter into dialogue, even with previously unknown RKCs (Fig. 8.4). Using the broker concept to describe how pandemic objects contributed to the development of new relationships between RKCs and that of boundary objects to analyse the role played by their experts allows us to highlight the relevance of mutual entanglement between human and non-human actors within the processes that create, maintain and transform the social worlds concerned.

Terefore, on one hand, pandemic objects constituted a strategic opportunity to engage experts and impostors in responding to RKC members' needs and, on the other, they enabled various voices to be heard in public debates. In this way RKCs acquired greater visibility in the public sphere during the pandemic by reconfguring themselves into new social worlds (T3) made up of alliances between previously distinct RKCs. Te vaccine, e.g., was a powerful broker soliciting both RKC experts and impostors and triggering shared action, such as public demonstrations, online meetings and petitions, as in the following case:

A beautiful and colossal European petition for freedom of choice on vaccines, promoted by the European Forum for Vaccine Vigilance. It is very appropriate today to look at the mass of politicians in the throes of authoritarian hysteria. And if we talk about fu vaccination, anyone deciding to refuse is totally safe because there is strong scientifc evidence of its ineffectiveness. (24/04/2020, Transcription and translation of a 5BLs Facebook post)

Web-platforms were also key brokers, giving great visibility to the new social worlds confgured as an alliance between RKCs and their claims. While STS have highlighted the signifcant role played by web-platforms during public health crises (Tim et al., 2013), we also noted that they acted as brokers, both providing RKCs with alternative information during the frst period of pandemic and spreading the refused knowledge supported by their experts.

Byoblu is an example of these web platforms, as an independent information channel with 511,000 subscribers until 30 March 2021, when the channel was banned from YouTube after public accusations that it was spreading fake Covid-19 news. Byoblu's importance during the Covid-19 controversy is also demonstrated by its increasing follower numbers. On 22 January 2020, when the Italian state of emergency was declared, Byoblu had only 7683 Instagram followers, a fgure which doubled during T3 to 16,653 followers by the end of June 2020 and 518,000 on YouTube.7 Meanwhile, Pandora TV, another independent information channel founded in 2014 by Giulietto Chiesa, a politician and journalist, served as a refused knowledge lab with more than 100,000 subscribers. Tese two channels supported and disseminated the ideas of RKC experts, thereby increasing their prominence during the health emergency. For instance, Pandora TV gave the Montagnier interview on the origin of the virus that aired on 28 February 2020 great visibility, with more than 37,000 views.

Hence, Byoblu and Pandora TV gave the experts recruited by RKCs a stage, allowing them to act as facilitators or "connectors" (Cook, 2004; Latour, 1987), i.e. acting as boundary objects fostering opportunities for collaboration between RKCs. In this way, not only did experts mobilised by the virus and pandemic objects provide interpretative resources used by RKCs to reduce initial pandemic uncertainties, but they were also shared actors linking RKCs which previously acted as separate entities. Tus the combined action of pandemic objects as brokers and experts as boundary objects allowed Pro-vaccine choice, Stop 5G, AW and 5BLs to interact even more frequently and share pandemic narratives by the end of lockdown (T3).

Figure 8.5 shows the reconfguration process which occurred after lockdown and the role played by experts, impostors and pandemic objects in greater detail. During T3 the four RKCs merged into a new social world in the pandemic arena—as an assemblage of interests and narratives—through the work of experts, pandemic objects and impostors visibly favouring coalescence between diferent RKCs. Tis new confguration can be considered an example of various processes in emerging social

<sup>7</sup>One year later, on 30 March 2021, YouTube decided to close the Byoblu channel after 14 years of activity due to policy violations. Since then, Byoblu has raised more than 300,000 Euros to buy a national TV channel.

**Fig. 8.5** An example of how pandemic objects trigger experts and impostors, acting as boundary objects and fostering collaboration between RKCs

worlds during Covid-19, involving the RKCs, as the case of the R2020 network shows. R2020 was founded by Sara Cunial, an Italian MP, and Davide Barillari, a regional councillor, both well-known supporters of the Pro-vaccine choice movement. Tere is nothing random about the fact that they called R2020 a "network of networks"8 supporting heterogeneous goals going far beyond free vaccination choice, such as alternative visions of health, with a strong emphasis on individual agency in healthrelated decision-making processes, home-schooling and an "awareness" lifestyle.

Collaboration between RKCs trying to establish a new "regime of truth" with which to understand the pandemic crisis was made possible by mobilising their members against perceived common enemies mainly the government and scientifc institutions—thus opposing their anti-contagion strategy by supporting alternative forms of technoscientifc assemblages (Van Loon, 2002).

<sup>8</sup>https://r2020.info, (accessed: 22/05/2020).

Public demonstrations involving diferent RKCs were organised by R2020, including after T3, until November 2020. Te main purpose of these initiatives was to oppose the Italian government's pandemic policy based on scientifc experts' advice and framing the situation as a global health emergency. By contrast they demanded:

Te immediate suspension of the Coronavirus state of emergency, the restoration of the Constitution and respect for our rights. We propose concrete and immediately actionable policies putting citizens' health, people's wellbeing and respect for life above all other interests. (22/05/2020, Transcription and translation from the ofcial R2020 website: www.r2020.info)

From 30 June to 1 July 2020, R2020 organised a national event in Rome designed to recruit people and communities interested in various vaccination choice and 5G themes and refused knowledge about health in general. Several other events can be regarded as concrete expressions of the RKC reconfguration process, such as the 20 June and 10 October "no-mask" events held in Florence and Rome, respectively. Tese were organised in the form of public demonstrations against the mandatory use of face masks as a danger to democracy and health (see Sect. 8.3) which were also covered by the mainstream media. Other similar local events were held in many other Italian cities—e.g. Como, Varese, Udine, Padua and Trento—occupying squares and breaking anti-contagion rules with large mask-free crowds, in the name of public rebellion. Later, new protests mobilised by pandemic objects proliferated, such as those against the green pass, which again brought together previously separate RKCs. On all these occasions a number of pandemic objects—face masks, epidemiological data and tests—acted as brokers for the sharing of interpretations elicited by RKC experts, with impostors as their counterparts.

In addition to R2020, a prominent role within the new shared RKC social world was played by the Italian Organisation for Health (OIS), founded in October 2021 with its own website and a Facebook page used by more than 10,000 people. Tis new social world encompasses members of Pro-vaccine choice associations together with people concerned about 5G and/or followers of the Five Biological Laws as well as consumers of alkaline water.

New online communities challenging the mainstream view of the pandemic mushroomed. Many of these are also based on the sharing of experiential knowledge (Crabu et al., 2022; Van Zoonen, 2012), like the Telegram groups made up of individuals belonging to diferent RKCs and designed to monitor the side efects of vaccinations with images and descriptions of personal experiences of side-efects witnessed or heard about. Masks, Covid-19, vaccines and tests therefore provided many opportunities for RKCs to share their experts and create common lifestyle and health languages and knowledge claims consistent with alternative ideas of citizenship.

#### **8.6 Following Pandemic Objects and Discovering New Social Worlds**

*Pandemic Objects*, an editorial project refecting on the objects that acquired new meanings during the pandemic, was born at London's Victoria & Albert Museum. Te aim was to show how positive tests became symbols of public panic and thermometers instruments of social control, hospitals were made into convention centres, parks became contested public assets and handwritten signs began to appear in store windows around the world to explain closures or new rules, such as social distancing regulations. Tis project underlined the importance of objects to pandemic narratives, in both novel meanings and new uses.

What emerges from our web-ethnography during the early months of the pandemic is that some objects played a crucial role in the emergence of new social worlds within which contesting institutional knowledge has become increasingly complex: starting from a demand for alternative public health management related to Covid-19 to claiming new models of care, well-being and citizenship based on refused knowledge in pandemic times. RKCs thus coalesced into new assemblages of allies and enemies and knowledge claims combating the mainstream interpretation of the pandemic.

In fact RKCs questioned the management of the pandemic by national and supranational agencies such as the Ministry of Health, the National Institute of Health and the WHO, but also the Covid-19 knowledge promulgated by these institutions and the scientists dominating the mainstream media. Some RKC experts such as Montanari and Montagnier and other institutional experts considered impostors, such as Burioni, were mobilised in a relationship with pandemic objects acting as boundary objects shared by previously separate RKCs. Re-interpretation of the virus and certain objects such as face masks, tests and apps fostered a reconfguration of relationships between these social worlds. Separate contestations and claims became more complex, giving rise to new shared refused knowledge and public demonstrations during the early stages of the pandemic.

Although each RKC had its own set of experts, and targeted specifc impostors in a critical way, the pandemic triggered new socio-technical assemblages within which such experts and impostors acted as common resources and promoted a shared language (Carlile, 2002) laying the foundations for the consolidation of new social worlds opposing science, the state, the media and corporations within the pandemic arena. Nonhumans—such as the virus and certain pandemic objects—played a pivotal role in all of this not only because they became the focus of public discourse, but also because they invoked the interpretations of RKC experts together with those of impostors. From this perspective it might be said that these non-humans mobilised both experts and impostors to fll the relational gaps between RKCs which had never previously shared common goals.

Pandemic objects and the virus itself can therefore be seen as brokers capable of laying the foundations for common public demonstrations as happened in Italy, e.g., with R2020 or the "no-mask" and "no-green pass" movements which challenged the potential for herd immunity through health policy measures based on testing, face masks, green passes, apps and vaccination. New social worlds like R2020 and others, moreover, continued their work in the post-pandemic period, also extending their claims to cover multiple issues such as the global food crisis and overbuilding.9 In this way the agency of pandemic objects and their role as brokers providing shared interpretative resources generated by RKCs' experts and impostors, in particular, is further highlighted within refusedknowledge-based social worlds.

### **References**


<sup>9</sup> See: https://r2020.info (last access 6 February 2023).

Collins, H., & Evans, R. (2007). *Rethinking expertise*. University of Chicago Press. Cook, I. (2004). Follow the thing: Papaya. *Antipode, 36*(4), 642–664.


Hine, C. (2000). *Virtual ethnography*. Sage.


**Open Access** Tis chapter is licensed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/ by/4.0/), which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence and indicate if changes were made.

Te images or other third party material in this chapter are included in the chapter's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the chapter's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder.

# **9**

# **Do the Media Refuse Refused Knowledge?**

**Paolo Giardullo**

### **9.1 Introduction**

To what extent do media narratives afect the shaping of social worlds such as refused knowledge communities (RKCs)? How do the traditional media contribute to keeping these separate from, and in confict with, science? Fieldwork on four RKC cases shows that the traditional media (newspapers, TV news and their digital versions) are often accused of being the 'in-house organs' of the scientifc elites and attacked as such. Te newspapers, and the media in general, are bitterly criticised by RKCs as fundamentally corrupt and for reporting only the scientifc perspective and that of the political establishment underlying it (Bory et al., 2023). Evidence of this sort calls for an enquiry into the media as part of a broader analysis of RKCs. Accordingly, this chapter will examine refused knowledge coverage trends and narratives across the Italian press. Te

P. Giardullo (\*)

Department of Philosophy, Sociology, Education and Applied Psychology (FISPPA), University of Padova, Padova, Italy e-mail: paolo.giardullo@unipd.it

<sup>©</sup> Te Author(s) 2024 **225**

F. Neresini et al. (eds.), *Manufacturing Refused Knowledge in the Age of Epistemic Pluralism*, https://doi.org/10.1007/978-981-99-7188-6\_9

main objective of this analysis is to consider how the media contribute to the process by which refused knowledge and its opposite, the legitimate and accepted body of scientifc knowledge, are defned.

Our starting point will be the role played by the media as a key player in assuring the public role, relevance, and legitimacy of the scientifc institutions and professional researchers. According to the literature, the medialisation of science is a precondition, frstly, for its legitimisation and, secondly, for the political efectiveness of scientifc expertise for governments (Peters et al., 2008). In this sense, science's political value in the media is a relevant entry point, and it further supplements analysis of the social world framework to cast light on its confict with RKCs, particularly concerning the way the diferent social worlds are framed and constantly separated of from one another. Te media are believed to be some of science's most loyal allies (Gieryn, 1999, p. 2000), and indeed, they accord wide coverage to science and technology issues. Research on science communication and scientifc journalism scholarship provide evidence for this claim: on one hand, there is long-term evidence of media reporting of scientifc content (Crabu et al., 2021; Summ & Volpers, 2016; Bucchi & Mazzolini, 2003; Gregory & Miller, 1998), especially biomedicine and health in general (Neresini et al., 2019). Scandals and misconduct stories (Ampollini & Bucchi, 2020), crises (Ungar, 2008), controversies (Lorenzet, 2013) and other potentially newsworthy events are undoubtedly widely covered as news stories. In addition to this interest in technoscientifc topics by the media, scholars and researchers have also acknowledged that scientists and scientifc/research institutions actively seek out the media spotlight (Bauer et al., 2018; Peters, 2013; Rödder et al., 2011).

Te literature thus confrms that science and technology can easily be framed as connected in a symbiotic relationship with the media sphere (Besley & Nisbet, 2013; Peters et al., 2008). Taking stock of this symbiotic relationship, RKC analysis can be supplemented by considering a media-oriented research question asking specifcally whether the media refuse refused knowledge and their communities. Addressing this research question can provide a more general, complementary perspective of refused knowledge studies and an alternative entry point such as this may complement the analysis of social worlds which polarise refused knowledge and science. RKCs take part in a network of interactions in which they feel they belong to a 'social world', and the opposite is also true: scientifc institutions like to feel part of diferent social worlds from those of RKCs. Tus, both sides believe the other to be wrong or, at best, biased. Tis supposed wrongness is also built, negotiated, and shaped through communication fows across the media, a process which can be interpreted as boundary work: RKCs self-identify as providers of alternative epistemologies making claims about health and citizenship (Morsello & Giardullo, 2022; Crabu et al., 2022).

In this general context, the (social) media play a signifcant role within the ecology of resources mobilised by RKCs, and media narratives perform an active role in shaping identity and supporting RKCs' discourses in the four cases analysed in this book (Bory et al., 2023). Digital ethnography shows that RKC experts act as infuencers and thus catalyse (read accelerate) certain processes precisely through discursive practices identifying boundaries between communities: RKCs and scientifc institutions (Ibid.). By claiming the epistemic validity of experiential knowledge through a repertoire of practices this identity-shaping process is explored widely and analytically throughout this book. Complementing this outlook requires exploring the fip side of the coin: how the media actively strengthen and politically legitimise science when they talk about refused knowledge.

As we will see in the following sections, both coverage and discourses embody a performative role that can be regarded as an element in boundary work contributing to separating RKCs and social worlds situated within the scientifc universe of discourse. In this case, the relationship between the two seems complementary: RKC discourses would not exist without their counterparts, the health institutions and scientifc experts. In this case, enquiring into the way separation between social worlds takes place encompasses the media domain, ofering a supplementary outlook: who and what is accepted as scientifc and, conversely, who and what is not.

Within this general context, I will analyse both the coverage of the four RKCs and the related narratives using the *Technoscientifc Issue in the*  *Public Sphere* (TIPS1 ) project platform. Rather than contributing to the analysis of each single case, the analysis aims to ofer a broader view of the role of the media, namely the daily press, as regards refused knowledge in general. Tis analysis presents several implications addressed using a twofold approach. Indeed, its examination of the quantitative presence of RKCs in the media adopts a specifc concept from media analysis, agendacutting, i.e. the omission of specifc issues (Buchmeier, 2020). In addition to this coverage analysis, I will also examine the content of the articles related to the RKCs at the core of this book. Te framing and narratives characterising the discourses around RKCs has the potential to enrich our understanding of the boundary defnition and social world separation processes. Further analytical resources have been borrowed from media studies and communication scholarship, specifcally from analysis of conspiracy theories, fake news, and debunking practices, often examined in new media, and on cases of pseudoscience and fraud. Tese accounts can ofer a specifc perspective on the main research question addressed here. Given the uneven distribution of coverage of the four RKCs, I compared their framing and the features with other publicly contested and ostracised scientifc claims and discoveries, such as the 'Di Bella method' and the 'Stamina Protocol' controversies.2 To this end, the analysis considers a long-term timespan covering a period from 2010 to 2022 enabling comparison across time between the four RKCs and their benchmark corpus contents.

Before moving on to the analysis, I will address the specifc contribution of the media to reinforcing science's authority. Evidence from the literature, as we will see, is made up of a nexus between the quantitative coverage dimension and the qualitative dimension regarding the narrative adopted in newspaper articles. Coherently, the analysis reports that

<sup>1</sup>http://www.tipsproject.eu/tips/#/public/home.

<sup>2</sup>Te 'Di Bella method' and the 'Stamina Protocol' are two cases of medical fraud that drove media attention in Italy. Te former had its momentum around 1997–1998 and was about a supposedly miraculous cure for spinal muscular atrophy as claimed by its inventor Dr Luigi Bella, a physician. Te latter was about the opportunity to cure neurodegenerative diseases through stem cells; it was promoted by Davide Vannoni, a communication expert, in between 2009 and 2013. Both cases raised some popular consensus pushing health authorities in Italy to start an experimentation that eventually failed. 'Di Bella method' and 'Stamina Protocol' as discussed in Sect. 9.3 will be used as benchmarks for the analysis of media narratives of RKCs under scrutiny.

both the coverage and the content vary from one case to another on the grounds of specifc media style, in particular, as a representative of the media, the newspapers sometimes reject some RKCs more strenuously than others.

#### **9.2 Public Communication of Science and Technology: Some of the Lessons Learned About Institutionalisation Trajectories via the Media**

Interactions between journalists and scientists are frequent and eased by long-term contact. While research institutions and press ofces play a signifcant role in the public communication of science (Peters et al., 2008), scientists and researchers learn about their colleagues through the mass media (Rödder, 2009). Tis state of afairs has prompted scholars to consider the public communication of science a functional necessity and a global phenomenon in democratic knowledge societies (Peters et al., 2008). Te relationship between scientifc research and media communication can be characterised by means of the media's twofold role: institutionalising the ofcial research populating emerging innovation networks (Gibbons et al., 1994) and promoting a critical appro,ach to science. Tese fip sides of the same coin are key to the symbiotic relationship existing between science and the media.

In exploring the key features of this relationship, we will examine past public communication of science trajectories and their narratives, as a feature of modern science since the early nineteenth century, taking a number of forms from itinerant lectures demonstrating scientifc principles common in the United States (Lewenstein, 2016) to the public demonstrations widespread around Europe (Jackson, 2016). Scientists in France and Italy have long been writing for non-specialist audiences about astronomy and physics (Bucchi & Trench, 2014), but it was not until the early twentieth century that the people involved in public communication of science and technology, such as science journalists, became visible and their professional credentials publicly established. Two features of the well-known defcit model of public communication of science have since developed and certain communicative patterns are still visible today: the need to inform audiences of recent developments in technoscientifc research, assuming a knowledge transfer need, with such transfer needing to be tailored to the (hypothetical) requirements of a passive audience with (uniformly) limited, if any, ability to grasp its scientifc contents. While this model would appear seriously limited, even inadequate, it has historically been a success story: downstream communication simplifying content for audiences (Hetland, 2014) is a rhetorical trait typical of science's public image across the news (Dunwoody, 2014) and seems to transcend varying innovation and scientifc research regimes (e.g. the change from Mode 1 to Mode 2, Gibbons et al., 1994). Although it is generally agreed that diverse communication models may coexist, longitudinal examples of media analysis have recorded a trend to a specifc kind of 'knowledge transfer' rhetoric. Te prominence of this perspective is sufused by a key audience knowledge defcit assumption requiring knowledge transfer not only to inform—as with any content becoming news—but also to educate audiences.

Tis perspective gained momentum after World War Two with massive and structured funding for scientifc research from national governments, the so-called social contract for science (Guston, 2000). Long-term analysis of science coverage in newspapers confrms increased attention to scientifc content, at least until the early 2000s (Bauer, 2012; Pansegrau & Bauer, 2018) and subsequently remaining stable (Neresini, 2017).

In terms of narratives, a number of studies have noted a tendency to celebrate science and its role: from a difusionist perspective of innovation, science is portrayed as a major force in steering innovation and thus generating well-being. A seminal work by Dorothy Nelkin for the US context (1996) highlighted a media portrayal of scientists as gifted problem-solvers, thus cultivating an image of science and research as a major tool for successfully addressing social needs. Bucchi and Mazzolini (2003) reported similar fndings in the Italian context, with a tendency to represent science as uncontroversial and narratives depicting scientists and news with a problem-solving orientation, generally in neutral tones. Other researchers have confrmed this fnding regarding the use of promotional metaphors in stem cell research and the potential application of new genetic technologies (Rödder & Schafer, 2010).

Schäfer (2011) called this narrative register 'popularisation mode', in accordance with what we have referred to as knowledge transfer. Such articles are frequently published in special sections and a scientifc coverage boom, frst in physics and then in health and biomedicine, was supported by this kind of narrative (Neresini & Lorenzet, 2019). Although scientists may criticise scientifc journalism for being over simplistic and inaccurate, even sensationalist and alarmist, paying little attention to specifc details such as experimental design (Dudo, 2015), this kind of narrative refects a supposedly aseptic communication mode simplifying a register used among scientists themselves (Schäfer, 2011). An explanation for this may be found in the features of the medialisation process (31). To build public political legitimacy and successfully apply for funding, scientifc research institutions (labs and universities and also frms) align to this media logic, increasingly equipping themselves with special facilities (i.e. press ofces) with which to provide content for journals and other media outlets (Schäfer, 2011).

A diferent means by which media report news about science and research consists of scientifc topics discussions going beyond merely summarising research/expert fndings or tackling the role of scientifc research in connection with broader issues (Summ & Volpers, 2016). Indeed, it is sometimes its political value which brings scientifc content into the public debate, as with energy transition (Neresini et al., 2020), nuclear energy (Tollefson, 2020; Gamson & Modigliani, 1989), and other environmental crisis topics, such as climate change (Boykof & Boykof, 2007) and, more recently, the SARS-CoV-2 pandemic (Crabu et al., 2021).

Tis review shows that a twofold science reporting style such as this is homogeneously distributed across media outlets and cultural contexts. Coverage and celebrative rhetoric would seem to be constant across a range of countries, but what happens when the content of the topic is controversial, unproven, or even supposedly false, like refused knowledge? Recent scholarship has examined fake news and misinformation, for a better informed analysis of the treatment of refused knowledge in the media.

### **9.3 Alternative Knowledge in the Public Domain**

Over this last decade, many science communication scholars have tackled the issue of fake news (Vargo et al., 2018) and misinformation (Wagner & Boczkowsky, 2019), including in connection with the concept of posttruth (Iyengar & Massey, 2019). Most, if not the entire, literature published on the issue has concentrated on the way content is shared, consumed, and, ultimately, circulated via social media, in an attempt to detect and gauge efects on its audience. On the strength of digital methods, scholars have tracked the dissemination of content across users' profles, reconstructing networks of users coalescing around specifc issues and generating what have been called echo chambers (Del Vicario et al., 2016). Although the fake news topic is not directly connected with the research presented in this book (see Introduction and Chap. 2 by Federico Neresini), a number of insights can, in any case, be distilled from analysing refused knowledge in public. Indeed, social worlds can be set up on the basis of the discourse disseminated by the media. As new media studies and internet studies have pointed out, media technologies, and more specifcally ICTs, contribute to holding together social worlds (Maxigas & Latzko-Toth, 2020) which cross territorial boundaries (Couldry & Hepp, 2013). In the case of RKCs, the role of infuencers channelling content and counter-narratives helped to hold together groups and communities across Italy during the frst year of the pandemic (Bory et al., 2023).

Echo chambers, and social bubbles, can be considered a relevant online example, consistent with the social worlds framework. In addition to media practices, specifc content may also reinforce world views and then confgure the separation of social worlds. Transposing these processes to the specifc context of newspapers, more specifcally, can provide insights into this same social world separation process. Indeed, the media ofer a rhetorical set of images, metaphors, and labels for 'knowledge transfer', contributing to the institutionalisation of scientifc research. As we saw in Sect. 9.2 of this chapter which outlined the main features of the 'regular narratives' contributing to building science as a separate social world while opposing complementary RKC narrative frameworks. Currently, we are lacking a similar account of the general features of narratives on issues publicly marked as non-science, a fact which is particularly striking if we consider the well-known example of fringe science in the case of cold fusion. In this example a news outlet provided a narrative on Pons and Fleischman that leveraged a successful experiment rhetoric and mobilised resources for the two, including listing their scientifc credentials (Gieryn, 1999). Only once Pons and Fleischman's public example had been disavowed did the media report it as a hoax, changing the tone and register used in relation to the two researchers.

Hence, to properly answer our main research question, investigating the narratives produced by the media may further inform this chapter's analysis. As the Pons and Fleischman example showed, the media are fully capable of endorsing and rejecting news at will, on the basis of what they consider true or fake. Te cold fusion story also demonstrated media willingness to adapt their narratives about a single object and frame it in contrasting ways. To better understand whether, how, and to what extent the media refuse refused knowledge, I will frst reconstruct features of two relevant Italian cases: the 'Stamina Protocol' and the 'Di Bella method'. Currently, these are closed controversies: both have been labelled fraud3 and non-science (Abbott, 2013), respectively, in the public debate, and accordingly disparaged.4 For this reason, the two cases constitute a benchmark with which to compare the framing of refused knowledge, casting light on the ways in which traditional media outlets rhetorically reject RKCs by marking the diference between what is accepted as a science and what is not. Tis can be viewed as a form of public discrediting, but the two cases are in any case benchmarks for interpretations of media coverage of the four RKCs examined here.

<sup>3</sup>Te titles and texts of articles published in the Italian newspapers reported from here onwards have been translated into English by the author. "Te country of saints and navigators [i.e. Italy, ed.] is now packed with misunderstood genius", published in *Il Giornale*, 24 June 2013; "Nature [the journal, ed.] against Stamina 'It should be stopped'" published in *La Repubblica*, 13 December 2013; "'Te Stamina method is a scientifc fraud which endangers our health'", published in *La Stampa*, 16 June 2015.

<sup>4</sup> "Charlatans in science", published on *Sole-24Ore*, 26 March 2018.

Working on content and narrative is crucial, but a further interesting line of analysis consists of the coverage of specifc issues over time. Vargo et al. (2018) tracked the connection between issues at the core of fake news narratives, typically disseminated online, and the coverage of these same issues on other news outlets. Teir research reveals a kind of agendasetting efect derived from fake news creators propagating mainly across other online sources. Traditional media, such as newspapers (Ibid.), tend not to be infuenced by so-called fake news providers. If they cover such issues, it is more likely to be part of a full-blown debunking campaign. Traditional news sources, such as the BBC for instance (Jackson, 2017), may be openly committed to combating fake news through debunking, but most media outlets, especially quality newspapers, avoid reporting them (Vargo et al., 2018). Te hypothetical lack of coverage of RKCs can be explored by surveying newspaper coverage: low coverage by quality newspaper outlets about a certain issue would indeed indicate a certain degree of refusal. Buchmeier called this agenda-cutting (Buchmeier, 2020).5 Connected to the parent theory of agenda-setting, agenda-cutting is not merely its opposite, namely an absence of coverage, but rather entails the specifc reasons why media do not cover a specifc issue (issueomission) or, rather, prefer to rank it low in their agendas (issuediminution) or even, in the long term, stop covering it (issue-removal). Tis perspective complements the idea of the media's carrying capacity (Hilgartner & Bosk, 1988), according to which issues compete for inclusion in the media agenda over time. Tey succeed in this under certain conditions, such as when they can be related to other news stories (Neresini, 2000) or meet some relevance parameters (e.g. proximity, recency) that connect with audience interests (Scheufele, 2010) and thus become anchored (Giardullo, 2019). Te concept of agenda-cutting enables us to analytically distinguish between diferent cases and explore hypotheses seeing the media as a primary supporter of science institutionalisation by omitting, diminishing, or even removing specifc issues.

<sup>5</sup>Te concept emerged well before Buchmeier's contribution but, until recently, it was undertheorised in media and journalistic studies. Moreover, as Buchmeier himself noted, although some scholars may have described or analysed omission, diminution or removal processes in the media they rarely made any reference to the concept of agenda-cutting.

In sum, the method adopted for the analysis combines the two approaches described so far (Table 9.1).

Te analysis that follows builds on two main empirical approaches. Te frst is a quantitative approach that assesses topics' absence/presence or visibility/invisibility, thus indicating a primary level of rejection of refused knowledge. Tis is further informed by topic modelling (Blei et al., 2003) and contributes to characterising coverage by interpreting the agenda-cutting process. In the second approach, qualitative analysis identifes a secondary rejection level made apparent by means of openly discrediting/crediting such knowledge and the related social worlds, thus informing and qualifying the agenda-cutting process. For Buchmeier (2020, p. 4), performing an agenda-cutting analysis requires contrasting or comparing the absence of coverage (and how it may reduce over time) with some other evidence. Tus, researchers must be aware that something is happening if they are to ensure that a topic is not covered.

Tus, our data source was the TIPS project (Neresini et al., 2020, 2023; Crabu et al., 2021), informed by the research experience of the team that worked for an extended period on the four RKCs. Te TIPS project developed a purposed platform as a tool with which to survey the Italian media sphere by monitoring major daily newspapers. Te platform ofers a complete database of articles published since 2010 by the main Italian daily newspapers which allowed us to survey a signifcant share of the Italian media in a longitudinal way, in both coverage and article content terms. However, as we will see below, the two approaches tend to confate, since some of the narratives are not independent of the coverage. Building upon the data provided by TIPS and comparing it with the analysis previously published by the research group, these two enquiry approaches analytically tackle the main research question regarding the role of the media in separating social worlds and verify the institutionalisation of science through media coverage and discourse hypothesis.

**Table 9.1** Methodological approaches to uncovering media processes related to newspaper refused knowledge discourses and the related communities


## **9.4 Refused Knowledge Communities in Italian Daily Newspapers: Coverage**

To assess the presence of an ongoing agenda-cutting process, a query design procedure was implemented. Te queries were based on the objects at the core of the four RKCs: vaccination, fve biological laws, 5G technology, and alkaline water. Tese objects were then matched with further keywords that emerged from the feldwork by the research team. Te outputs of this procedure consist of articles reporting on the issues and do not necessarily represent the four RKCs. Tis is thus a dataset of use in understanding the narratives generated by sources other than the community itself. If coverage of the issues related to the four RKCs at the core of this book are considered, it seems clear that they have been covered to entirely diferent degrees. Table 9.2 shows the queries used to extract the articles for the four RKCs.

Te diferences in coverage between the four RKCs are evident, but this is even more interesting if we examine distribution over time. Indeed, the time variable did not afect the coverage of the four RKCs in the same way. Most of the research underlying this book was done during the pandemic, and three out of the four communities were in some way favoured by lockdown, and increased their supporter (Morsello & Giardullo, 2022; Bory et al., 2023) and even practitioner numbers (Crabu et al., 2022). Te same was not true of the Italian daily newspapers. Te impact was extremely low for articles that the four queries generated, if they are


**Table 9.2** Number of articles for coverage and narrative analysis (2010–2022)

Source: Author's own elaboration of TIPS project's data aFor this case a broader query was launched: 'vaccin\*', cf. below compared with the total number of published articles over the same period. Alkaline water and Stop-5G issues were virtually absent from the media debate (with 0.0004% and 0.0006%, respectively, on average, from 2010 to 2022), while 5BLs' presence was higher, with an impact of about 0.0023%. Tese three RKCs were rarely reported in the news. Considering the growing number of social media users (Bory et al., 2023) only following content and the accounts of infuencers related to these issues, or directly engaged in communities, an ongoing agenda-cutting process seems clear. Although relevant diferences between the three communities do exist (see further details in the next section), the issues at stake were omitted to an almost equal extent. Considering variable time, by year, it was noticeable that although alkaline water was almost entirely omitted, 5BLs and Stop-5G coverage peaked in 2016 and 2020, respectively.6 After these peaks, coverage decreased markedly, dropping by more than half for 5BLs and almost entirely vanishing for Stop-5G. It must thus be inferred that a twofold agenda-cutting process was under way: the low coverage hints at issue-omission, as in the case of alkaline water, but this was further exacerbated by what may have been issue-removal by Italian newspapers for more controversial issues such as 5BLs and Stop-5G, which imply serious health risks and long-lasting debate and controversy over electro-sensitivity.

Te pro-vaccine choice issue shows a completely diferent pattern: coverage was incomparably higher and defnitely more constant over time (total articles published = 0.225% in the 2010–2022 period and 0.49% in 2017–2022), peaking at 5214 articles in 2021 (1.17% impact). For this case, it would seem to be hard even to consider an agenda-cutting hypothesis, both by comparing the pro-vaccine choice data to other issues and also in absolute terms. If time is taken into account, coverage can be observed to have increased after 2017 (Fig. 9.1).

Te news articles reported vaccines and vaccination (2010–2016, N = 3627) as a medical resource and immunisation of subjects

<sup>6</sup>Peaks for the two RKCs issued considered are very small and limited across time: 24 articles for 5BLs in 2013, 14 articles in 2019 for Stop-5G.

**Fig. 9.1** Comparing trends: percentage of articles about the pro-vaccine choice RKC (black bars left hand scale) out of the total of vaccine-related articles (query 'vaccin\*' N= 76,182, grey line right hand scale). (Source: Author's own elaboration of TIPS project's data)

potentially at risk, as in the case of new vaccines against meningitis7 and AIDS.8 Tis seems to support the celebrative science narrative. Although some articles about vaccine adverse reactions are sporadically to be found, these were mainly framed as cases of medical malpractice.9 In general, vaccination hesitancy was not on the agenda nor were the RKCs. A marked increase in articles published during the pandemic years, especially from late 2020 onwards, was visible with numbers of articles doubling from 2019 to 2020 (from 179 to 373 articles) and further increasing thirteen-fold in 2021 (5194 articles). Looking at this data from an anchoring perspective (Giardullo, 2019) we might conclude that provaccine choice received more coverage precisely because of the wellknown COVID-19 vaccine controversy, the so-called AstraZeneca

<sup>7</sup> "A breakthrough vaccine prevents meningitis", published in *Il Giornale*, 14 July 2013.

<sup>8</sup> "AIDS, Italian vaccine efective: the TAT supports antibody production", published in *Il Messaggero*, 29 April 2015.

<sup>9</sup> "Our sister killed by a vaccine she should not have had", published in *La Stampa*, 20 February 2013. In this case, according to articles reporting the victim's family's words, the physician gave her a jab even though she was ill, with fu symptoms.

Controversy (Sendra et al., 2023). Similarly, the pro-vaccine choice issue was included in the agenda more frequently because of restrictions on the non-vaxed designed to raise vaccination rates. As soon as restrictions on individual mobility and social distancing began to be lifted, the public relevance threshold was crossed. Indeed, a previous study found that protests in the country were often organised by supporters of pro-vaccine choice, with 28.6% of the rally and protest event total coinciding with the advent of vaccination campaigns in Italy and involving pro-vaccine choice groups (Della Porta & Lavizzari, 2022). Te 'no-vax' label began being used widely in 2017 and prior to this no articles were published with this label in any of the eight daily newspapers monitored by the TIPS project. Although, historically, opposition to mandatory public vaccination is as old as vaccination policies themselves, this label emerged only in 2017, the year of great mobilisation against mandatory paediatric vaccinations in Italy, defned by the so-called Decreto Lorenzin approved in 2016. Te reasons for this label are perhaps tracked in accordance with the 'No-Movement' brand, used as shorthand for local unwanted land use (LULU) movements (Bertuzzi, 2019).

Relevant indications for agenda-cutting analysis may emerge from a comparison of percentage trends for articles about pro-vaccine choice as a proportion of article totals on the subject of vaccines: there was considerable reference to pro-vaccine choice communities during the years of greatest mobilisation (2017–2019), during which research showed that the community reorganised and its political relevance increased as politicians brought the issue to the Italian Parliament (Bory et al., 2023; Morsello & Giardullo, 2022; Casula & Toth, 2018). On average, 13.66% of articles referring to vaccines reported pro-vaccine choice in a growing common trend. Interestingly, in the pandemic years (2020–2022), the two trends decoupled: a rapid growth in the number of articles about vaccines was not matched by articles about pro-vaccine choice (only 3.5%), while the political and scientifc debate about the pandemic ramped up in the Italian press (Crabu et al., 2021). In 2021, the peak coverage of vaccines accounted for 15% of all articles published by newspapers monitored by TIPS. However, the share of articles about pro-vaccine choice was lower (11.56%) than the 2017–2019 period (average is 13.66%). In 2022, vaccine related article numbers dropped, whilst the pro-vaccine choice article share peaked at close to 17%. Based on these fgures, we might conclude that an agenda-cutting process took place during the gloomiest period of the pandemic, a period of great uncertainty during which most hopes were pinned on those working on vaccine technology development. If we apply Buchmeier's categorisation, such a decoupling of trends might indicate that some sort of issue-removal lasted right through 2020. Tere might be various reasons why the newspapers reduced coverage of pro-vaccine choice issues: a sense of responsibility, recommendations on limiting dispute and controversy during the critical phase of the pandemic, etc. Te above data shows an agendacutting process that changed in 2021 and possibly even evolved into a new pattern in 2022.

Considering the full range of RKC cases under scrutiny, we might hypothesise that the agenda-cutting process did not apply equally to all four RKCs. In the case of the pro-vaccine choice issue, it would even seem to work diferently for the same issue in accordance with events. Attempting to characterise the four RKCs, the time variable allowed some specifc interpretation to be brought in, but it was content analysis which feshed out the answer to our question about media coverage of refused knowledge.

#### **9.5 Between Institutionalisation and Discrediting: Keeping Social Worlds Apart Discursively**

While long-term trends in the public communication of science show that media outlets are frequently celebrative of research progress and success, according special value to experiment outcomes and reporting scientifc papers, the media also pay particular attention to controversial cases. Public controversies in the media often highlight clashes between diferent actors, anchoring them to pre-existing political debates, as we have seen. Scandals and misconduct stories (Ampollini & Bucchi, 2020) are potentially newsworthy stories, but it is interesting to note that they are widely covered as news stories. What about the way certain topics are framed? Te contributions in this book have noted that mutual accusations of untrustworthiness are very frequent and criticisms are directed at methods (Morsello & Giardullo, 2022; Bory et al., 2023), conspiracies (Bory et al., 2023; Stop-5G, this book), and epistemic assumptions (Bory et al., 2023; Stop-5G and alkaline water, this book). Accusation and blaming are recurrent, but do they culminate in open public discrediting? Tis latter was reported, for instance, in analysis of the framing of protesters (Chen, 2019): in Canada, a grassroots movement of indigenous people against the implementation of looser environmental regulations was discredited publicly on the media through a denigration strategy against its leadership (Ibid., p. 149). Similar framing emerged for the two benchmark cases: 'Stamina Protocol' and the 'Di Bella method'. Analysing the vocabulary characterising the articles about these two cases (N = 873) over 13 years (2010–2022), key elements emerge such as the use of specifc terms such as 'ciarlatano' (quack) and 'guru' for Davide Vannoni and Luigi Di Bella, the two exponents of supposedly miraculous cures for spinal muscular atrophy, oncological as well as neurodegenerative diseases. Interestingly, for the benchmark corpus about the 'Stamina Protocol' and 'Di Bella method' cases, a trajectory by which they went from being portrayed as apparently miraculous therapeutic cures to hoaxes is observable. Indeed, both therapies were imposed on hospitals by ministerial decrees or by administrative courts as patient-demandprompted experiments supported by the media.10

Tese discourses demonstrate an extremely negative media tone indicative of marked scepticism. I have already discussed the highly negative framing of the two cases, as well as the use of epistemic authorities outside the newspapers to reinstate the scientifc community's public image, such as the presence of infuential journals (e.g. *Nature*), or celebrities from the world of biomedical research, such as famous researcher and senator Elena Cattaneo. In these cases, not only did the epistemic

<sup>10</sup> Stamina protocol was a highly emotive issue as its patients were children sufering from muscular dystrophies. *"Little Sofa may be cured*", published on *Il Mattino di Napoli*, 8 June 2013; "Stamina protocol, approved for Federico: judges give green light for the therapy", published in *La Repubblica*, 18 March 2013. Similarly some journalists endorsed parents' point of view and expressed their support for the protocol and the hope it ofered, as in this case "Stamina, the rage and the cure, open letter to Minister Lorenzin" https://blog.ilgiornale.it/locati/2013/07/04/la-rabbia-e-la-cura- lettera-al-ministro-lorenzin/ retrieved on 28 January 2023.

authorities move to limit the damage done by 'quacks' but they may also have worked to restore the scientifc community's reputation.

'If in cases of scientifc fraud Italy should develop serious restrictive measures, in cases of research excellence it is important that it increases funding and attention to science. In the light of the challenging conditions in which excellence emerges, I have been disappointed by the lack of interest and, dare I say it, the lack of competence shown by recent governments towards biomedical innovations'. Tis is explained by Alison Abbott, a longstanding author for the most celebrated scientifc journal, *Nature*. (*La Stampa*, 15 April 2015)

Te Stamina afair could become a new 'Di Bella' case: this is the concern expressed today by leading international stem cell experts, gathered at the Telethon conference taking place in Riva del Garda (Trento). […] 'Science—added Naldini—has set itself rules for clinical trials, to guarantee patient safety and research. Leaving the rules behind means jeopardising patients' health and risking failing to see the potential efectiveness of the therapy. 'It is not a matter of thinking one way or the other, but of looking for evidence,' added Elena Cattaneo. In the case of the Stamina method, there is no evidence. Tis way of proceeding,' he concluded, 'is the antithesis of our usual working method'. (*La Repubblica*, 11 March 2013)

Tis narrative was designed to restore a scientifc reputation tainted by full-blown hoaxes (the 'Di Bella method') or potentially new and as yet unproven methods ('Stamina Protocol'). Can similar processes be detected for the issues related to the four RKCs under scrutiny?

Te four RKC issues are so heterogeneous that the narratives and rhetorical strategies marshalled by newspapers to frame these issues difered. To start with, analysis of the way these issued were framed clearly showed the primacy of the deviance frame in articles about 5BLs:

Against the defendant, the order (medical association) will also ask for compensation for damage to the decorum of the medical profession. Te note sent by the organisation states that 'by practising and spreading Hamer's German New Medicine, Dr Germana Durando has discredited the profession, adding to the very serious damage done to the patient who has been deprived of the care of ofcial medicine and treatment of recognised efectiveness'. 'Unconventional medicine,' explains President Guido Giustetto, 'is complementary, not a substitute, for ofcial medicine, as Article 15 of the Code of Medical Ethics clearly states. In addition, and this is the central aspect of the issue, the doctor must not remove the person being treated from scientifcally founded treatment of proven efcacy and is therefore obliged to decide in good time when it is appropriate to discontinue any unconventional methods adopted and resort to ofcial medicine, so as to guarantee the patient the most suitable conditions of safety and efcacy of treatment'. (*La Stampa*, 22 April 2016)

Who was Geerd Hamer? For medicine and the judiciary in many European countries, he was a quack, a dangerous pied piper who persuaded cancer patients to treat themselves with remedies that were not at all scientifc, refusing surgery and chemotherapy, even in cases where there was a good chance of a cure. To his followers, including certain doctors, he was a persecuted prophet. He was soon struck of the medical register in Germany (in 1986), and in other countries, including Norway, where he took refuge and founded a university in 2010 in his house on the outskirts of Sandeford. […] What makes his theory denying the medicinal efects of chemotherapy clearly delusional—and, unfortunately, it must be said, more viral—is his attack on medicine, which he considered traditional and accused of being a Jewish conspiracy. On the German New Medicine website, he published a letter to Trump, in which he accused Jewish rabbis and doctors of saving their own people with the Hamer cure and using chemotherapy and administering morphine to kill non-Jews. (*Corriere della Sera*, 5 July 2017)

Te two excerpts above show a deviance frame clearly supported by reference to victims who have turned to people following the dictates of the 5BLs. Many such cases include physicians or naturopaths whose patients died because they refused medical cures.11 Te deviance frame is further supported by some institutions, such as the Italian Medical

<sup>11</sup> "Refuses treatment because follower of Hamer Method, another woman died in Rimini", published in *Corriere della Sera* 3 March 2016; "Eleonora Bottaro, parents sentenced to two years in prison because they made her refuse treatment", published in *La Repubblica*, 20 June 2019; "Manslaughter accusation for the doctor who endorsed his colleague's decision to treat melanoma with homeopathy", published in *Il Sole-24Ore*, 15 February 2022.

Association, which require physicians to follow ethical rules. In this sense, the frame is strong and cohesive and fts into a crime news framework. 5BLs disciples are also contextualised as examples of extremely dangerous individuals frequently compared to Vannoni and Di Bella, labelled witch doctors in search of patients to cheat.12 In the case of public controversies about technoscientifc issues false balance is commonly found13 in media reports; presenting opposing positions on a certain issue in the same way gives an erroneous impression of scientifc uncertainty. Tis does not happen since there is agreement among scientists and across the media as well: the benchmarking cases would seem to suggest that when the scientifc community unanimously labels a theory or approach deviant, the media tend to follow suit.

However, this is not the case for pro-vaccine choice where, besides reports of protests, a recurrent theme in the articles is blaming and stigmatising those against compulsory vaccinations. A subject which was less present during the 2017–2019 period, many stories were about people who had been hospitalised or died from diseases that could have been prevented by vaccines. Tis emerged strongly during the pandemic period as a recurring topic.14 Although deaths of no-vaxers were not celebrated, newspaper articles tended to report such news together with a call for vaccination by health authorities. Te blaming frame would seem to be a sort of hidden fip side of the coin, appealing for responsible social communication campaigns and typically triggering fear as a persuasion strategy.

Te Stop-5G narrative is diferent again: there are very few articles in the corpus and they are divided up into two groups: a small one relating

<sup>12</sup> "Alternative cures, urine and scorpion venom: this is how the latest witch doctors recruit patients on the web", published in *La Repubblica*, 2 February 2016.

<sup>13</sup>According to Dixon and Clarke (2013) "while balance is considered a prominent journalistic norm (…), 'false balance' occurs when a perspective supported by an overwhelming amount of evidence is presented alongside others with less/no support and context—where the strength of evidence lies—is excluded (…) (pp. 359).

<sup>14</sup> "No vax killed by Covid at 62. He used to say: I am the last of the Native Americans", published in *Il Mattino di Napoli*, 5 February 2022; "Ten-year-old child died from Covid: he was hospitalised at Bambin Gesù. Call for vaccination", published *in Il Messaggero*, 12 February 2022.

to examples of local authorities difdent about 5G experimentation,15 and another group about the Stop-5G activists within the broader wave of protests against mobility restrictions and social mobility limitations in the summer of 2020.

On the railings delimiting the space around Dante's statue, signs were posted: 'Doctors and journalists, be dignifed, tell the truth', 'It's not a pandemic, it's genocide', 'Deaths counted twice deserve riots', 'Autopsies forbidden, people killed', 'Your health care devastated, our freedom humiliated', are some of the slogans. Some brought carnival masks to mock wearing surgical or cloth ones. Among the demonstrators' placards was also one with the inscription 'No 5G'. (*Mattino di Napoli*, 11 July 2020)

I swear, it's all true! […] Two other former 'grillini' [members of the 5 Star political party], Sara Cunial and Davide Barillari, have founded Vita, which, among other things, is Stop-5G and brings together the Mothers' People, the Sentinels of Liberty and other valiant people (…). Excuse me, but I've got a terrible headache: I'm going to get a vaccine. (*La Stampa*, 4 August 2022)

Taken together, these excerpts echo other analyses showing the way the Stop-5G RKCs were politicised in a drift towards a broader conspiracyoriented attitude (Bory et al., 2023). It should be noted that the second excerpt betrays an ironic take on a political proposal that united RKCs. Although not widely reported in the press, it is a further perspective on RKCs that not infrequently supplements attempts at debunking.16

In the case of alkaline water, within a general context of virtually nonexistent coverage, framing alternated between a presentation as perfectly normalised and fashionable to a more debatable one.

A more efective and costly option is a system which originated in Japan and is spreading throughout the world which consists of additional cleans-

<sup>15</sup> "Sagliano, 500 ask to stop 5G experimentation", published in *La Stampa*, February 2020; "Reggio Calabria 'stop 5G' During Covid municipalities against antennas skyrocketed" published in *Corriere della Sera*, 7 July 2020.

<sup>16</sup> "Pendants ''against'' 5G, actually radioactive: Dutch authorities ban 10 products", published in *Corriere della Sera*, 20 December 2021.

ing and sanitising action, a highly efective method that oxygenates and energises water, making it alkaline. Alkaline water thoroughly counteracts free radicals, pollution and stress in our organisms. (*Sole-24 ore*, 29 January 2015)

Initially presented as a promising natural adjuvant for stress and even cancer prevention supported by examples of national celebrities making alkaline water palatable,17 more recently, the framing has shifted towards debunking, following the same path as reported for other cases in the literature (Vargo et al., 2018).

Prof. Conte makes no bones about the fact that when it comes to the benefts of alkaline water, the nonsense is piled up out of all proportion. If we ask whether alkaline water is good or bad for us, we have to answer that it is neither good nor bad for us. Tis is another hoax. […] In fact, since it was discovered that areas surrounding some tumour tissues have an acidic pH value, the idea has been to do business by driving people to alkalise their bodies. In this regard, it is estimated that per capita water consumption is equivalent to 206 litres per year in bottled form, which translates into a turnover of 10 billion. (*Sole-24 ore*, 3 December 2018)

In this case the debunking is by experts interviewed to explain why alkaline water is not as promising as some sellers argue.

So, Joshua McAdams and Taylor BlandBall, arbitrarily decided to give their son Noah, who sufers from lymphoblastic leukaemia, a mix of CBD (an acronym for cannabidiol) oils, fresh food and alkaline water, and refuse traditional chemotherapy treatments. According to the New York Post online, the parents made this choice following some entirely personal considerations and without any scientifc evidence. (*Il Giornale*, 11 September 2019)

Te irony is tangible in this last excerpt as well in the shift from a neutral to a sarcastic tone and contributes to discrediting the issues espoused by RKCs. Does this count as a form of rejection of refused knowledge?

<sup>17</sup> "Barbara D'Urso ready for Te Celebrity Island" published in *Messaggero*, 4 April 2014.

Tus far the answer has not been a straightforward one but requires some further elaboration.

#### **9.6 Conclusions**

Tis contribution is an attempt to complement other contributions on RKCs in this book with an overview on the backdrop to many analyses of the ways refused knowledge can reinforce, circulate, and contribute to the shaping of specifc social worlds. Te analysis began with a research question derived from the evidence reported widely in the science communication literature regarding medialisation. Indeed, there is broad scholarly consensus that the media play a supporting role in science. Specifcally, it has contributed to promoting the so-called social contract for science (Guston, 2000) and support its institutionalisation in society. In this way the media promote science's political legitimacy in a symbiotic relationship which falls into the medialisation category (Weingart, 2022; Rödder, 2011). Accordingly, it is useful to ask if there is a pattern consistent with such symbiotic relationship for the RKCs and, if so, how it is confgured. One hypothesis is that the media actively refuse, by not covering, or discrediting, RKCs. Actually, the analysis provided in this chapter shows a more nuanced media's role or, at least, a less homogeneous one than might be expected. Rather than covering the various cases in the same way, the media coverage varied in accordance with the RKC issue dealt with. Analysis of TIPS project data revealed diferent levels of refusal, with analysis of coverage considering agenda-cutting, framing, and narrative hypotheses with a view to assessing the extent of publicly expressed discrediting of RKCs. Agenda-cutting (Buchmeier, 2020), here defned as withholding coverage or discrediting—as the 'Stamina Protocol' and 'Di Bella method' cases previously demonstrated—is consistent with the literature on the medialisation of science and the synergy between public science narratives and its political legitimation. By building a science-non-science barrier, discursive exclusion (agenda-cutting) and public discrediting would also be expected to be relevant mechanisms given the frequency with which these are cited by RKC members and in their online media outlets.

Longitudinal analysis from 2010 to 2022 enabled us to detect diferent phases—one before the pandemic and another directly connected with the turbulent pandemic period, and the Italian mass vaccination campaign in particular. In addition to the pandemic, other turning points emerged, such as compulsory child vaccination by decree in 2017. Tese turning points worked diferently in the Italian media context, as Sect. 9.4 showed, with the attention to (or refusal of) the issues raised by the four RKCs being unevenly distributed.

As Table 9.3 showed, in general it would seem that agenda-cutting was present in all the cases considered in this analysis but a number of diferences can be detected. Although all four cases were afected by issueomission, only pro-vaccine choice was covered sufciently to be afected by issue-diminution and issue-removal. As the previous sections showed, in three out of the four cases, the discourse was mainly linked to news stories that were rarely covered: 5BLs, Stop-5G (or electro-sensitivity), and pro-vaccine choice were mainly covered when there was a local news or crime news connection. During the pandemic coverage also increased in line with the growing political engagement of the three communities. In this sense, for these three cases, agenda-cutting alone can be confrmed, with issue-omission certainly present during the pre-pandemic phase, while issue-diminution emerged during the pandemic. We cannot distil a specifc indication from this evidence, except that anchoring was also applied to RKCs: the visibility of the pro-vaccine choice community defnitely increased during the pandemic.

Qualitative analysis provided additional elements about the way RKCs are publicly presented.18 Framings of deviance for 5BLs and blame for pro-vaccine choice are coherent with a public discrediting strategy designed to protect the medical community in the former and public policy in the latter. For 5BLs in particular, this is coherent with the earlier well-known 'Stamina Protocol' and 'Di Bella method' cases. Indeed, during the pandemic period, many scientists referred to these cases as examples of malpractice, accusing politicians and journalists of being overly

<sup>18</sup> It should be noted that the communities very rarely speak to the media themselves. Although this feature has not been properly thematised, it is signifcant that interviews on media outlet with provaccine choice or 5LB are particularly rare and totally dominated by the accounts of institutional experts and scientists.

**Table 9.3** Analytical scheme for the agenda-cutting, framing, and level of controversiality processes


emotive or irrational. One fnal element relates to the underhand irony employed in relation to RKC issues that had already been debunked in public, further discrediting them publicly, as in the case of 5G and electro-sensitivity as well as alkaline water.

In line with the wide variety of coverage of the four issues considered, a single take-home message is difcult to discern, but two conclusions can be drawn: the media refuses refused knowledge under certain circumstances and via diferent strategies, i.e. not talking and discrediting when it did talk. Not talking about refused knowledge was not the principal strategy, but it was a signifcant one, as in the case of pro-vaccine choice, whilst talking about them may have been functional to supporting political health decisions based on scientifc advice. In this case refusal is more underhand, using coverage in a blaming narrative. Tis reinforces the frame with irony to supplement discrediting and blaming.

Given the symbiotic relationship between media and science and technology, this analysis concentrated on naturally produced written texts, such as newspaper articles, on the assumption that these are proxies of media outlet orientations. However, the literature shows that these choices should be considered part of a more complex media ecology of the relationships between diferent actors. Agendas can be infuenced by external and internal factors: the former includes advertisers, political pressures, and the role of public relations practitioners (Colistra, 2012) while the latter encompasses anticipatory obedience (Buchmeier, 2020) understood as compliance with normative ideas coming from other actors such as political institutions. Another potentially useful area of enquiry within this broad feld is the resources that some RKCs may lack. As medialisation scholarship has shown (Peters et al., 2008; Schäfer, 2011; Weingart, 2022) scientifc institutions can marshal respected communication and press ofces, while RKCs generally do not invest in such communicative apparatuses but rather concentrate on channels such as social media. Tis is further proof of social world separation based on media representation. I have reported on representations of 'corrupted science' and rejected knowledge denounced as 'irrational'. Tese representations can be retrieved from other sources (e.g. social media) and also traced directly through interviews with members of RKCs. Perhaps the most important contribution of the present analysis is to show that media provide a discursive resource for both social worlds. Media representations can fuel mutual accusations and discrediting. On one hand, it is a resource, a complementary part of the science narrative and part of a discourse designed to reinforce scientifc institutions' value and role as potential political support for decision-making, especially at times of crisis such as the COVID-19 pandemic. In turn, the RKC narrative is confgured as a symbolic resource for RKCs themselves: blaming, mocking (irony), or openly accusing is a discursive resource supporting an antagonism and mistrust narrative. Tis fact helps us to describe a feature of the construction of the RKC social world: discourses as building blocks in a reciprocal relationship in which one side can hardly avoid talking about its counterpart. Once again, opposed social worlds are reproduced in a complementary way, as has emerged in the most recent research, including other contributions to this book.

#### **References**


**Open Access** Tis chapter is licensed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/ by/4.0/), which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence and indicate if changes were made.

Te images or other third party material in this chapter are included in the chapter's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the chapter's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder.

# **10**

# **Respecifying Fieldwork: Refused Knowledge Communities Explored Through the Refexive Lens**

**Barbara Morsello**

## **10.1 Introduction**

Conducting qualitative feldwork on refused knowledge-based social worlds, as well as building relationships with members of refused knowledge communities (RKCs) for research purposes, can be a challenging task for scholars exploring current ways in which the epistemic authority of science is being contested. Indeed, as has been highlighted by scholars engaged in the social studies of conspiracy cultures (Harambam, 2020a; Lepselter, 2016), followers of refused knowledge are not necessarily well disposed, or willing, to establish a dialogic relationship with academic researchers.

Indeed, refused knowledge followers share a widely held belief that academics in general act as spokespersons for epistemic regimes that they see as responsible for rejecting competing knowledge and claims at the margins of science, beyond the legitimate public debate. An additional

© Te Author(s) 2024

B. Morsello (\*)

Department of FISPPA, University of Padova, Padova, Italy e-mail: barbara.morsello@unipd.it

F. Neresini et al. (eds.), *Manufacturing Refused Knowledge in the Age of Epistemic Pluralism*, https://doi.org/10.1007/978-981-99-7188-6\_10

element at stake in conducting feldwork on RKCs is related to the fact that their members may hold beliefs, values, assumptions and political positions in sharp contrast to those of researchers themselves (Kelley et al., 2020). Against this backdrop, in adopting a refexive stance, this chapter explores the challenges that researchers engaged in studying the four RKCs considered in this volume (see the Introduction of this volume) faced in their attempts to negotiate and conduct interviews with refused knowledge followers.

In so doing, I will argue that refecting on how researchers handled the RKC interaction can provide relevant insights regarding the motivations and concerns driving people to dispute and distrust epistemic institutions. I thus highlight that *in itinere* refexivity during feldwork as well as an ex-post and distributed refexivity may be crucial strategies.

Terefore, this chapter is based on a refexive analysis of the various empirical materials I collected as a researcher conducting feldwork on refused knowledge-based social worlds: (1) feld notes (such as audio, visual and/or written materials) detailing interactions with members of the pro-vaccine choice community—the RKC I was most interested in; and (2) in-depth interviews with members of my research team regarding critical issues they faced in planning and conducting interviews with the four RKCs with which we interacted during our research.

Field notes, as well as interviews with members of my research team, supported me in recollecting my feldwork experiences and inspired my ex-post refections on the action taken. All the materials were scrutinised with refexive sensitivity. Tis deepened my understanding of how those who embrace refused knowledge relate to individuals rejecting the knowledge they believe in and was made possible by focusing mainly on how the researchers conducting the feldwork were viewed by the RKCs. Generally speaking, RKCs see academic researchers as part of an epistemic regime depicted in the public sphere as bearer of 'an epistemic supremacy' towards other forms of knowledge (Grodzicka & Harambam, 2021).

During the feldwork, RKCs showed an ambivalent attitude to the assumption according to which society bestows 'epistemic superiority' upon academics and, in general, members of other scientifc communities. On one hand, they attempted to exploit the interview interaction to dispute the alleged epistemic authority of the researcher. On the other, research participants occasionally attempted to instrumentally turn such authority to their advantage with a view to disseminating refused knowledge claims and legitimising them beyond their specifc social world of reference, thereby framing academic researchers as certifers of 'epistemic reliability'.

Despite refused knowledge followers' ambivalent relationship with the academic researchers, my colleagues in the research team conducting this feldwork and I were able to establish a trusting relationship with some members of the RKCs by adopting the symmetry principle (Bloor, 1976; Wyatt, 2008; Lynch, 2020) and, by embracing epistemic agnosticism (see Chap. 2 by Federico Neresini), we fostered greater engagement in the research.

Te remainder of this chapter is organised as follows. Section 10.1 provides an account of how refexivity was entrenched in my feldwork, particularly in the preliminary phases involved in building a trusting relationship with pro-vaccine choice for interview purposes. By analysing how the research team was viewed by respondents, Sect. 10.2 examines the way RKCs alternatively represented researchers as 'impostors' (see paragraph 2.1) to be avoided or, by contrast, as 'epistemic certifers' to be marshalled to improve the RKCs' reputation (see paragraph 2.2). Tis shows us the various legitimisation strategies in action, specifcally boundary work and mimicry, which were explored in detail in the other chapters (see Chap. 2 by Federico Neresini and Chap. 7 by Stefano Crabu).

#### **10.2 Negotiating Relationships with RKCs as a Matter of Refexivity**

Gaining access to feldwork is often problematic in qualitative research. In addition, researchers face challenging social interactions in negotiating relationships with research participants. Access to feldwork is not, in fact, linear but rather a fuid, multifaceted and temporary process, simultaneously requiring researchers to be sensitive to what is going on in the feld (Cunlife, 2011), which implies acknowledging the implications of negotiating access and building relationships with research participants (Cunlife & Alcadipani, 2016). Negotiating access to the research feld involves much more than entering an organisation, a community or a group and persuading participants to provide data. Generally speaking, negotiation begins with making calls, sending emails and writing letters to community gatekeepers (Fobosi, 2019) and does not end once feldwork has been accessed or when approval for interviews has been obtained. Building relationships with participants is an ongoing process requiring careful management by researchers (Cunlife & Karunanayake, 2013).

Tis implies that practicing refexivity, as an ordinary, unremarkable and unavoidable feature of action (Lynch, 2000), can help researchers take stock of their own biases, experiences and assumptions and the social and cultural contexts in which the interaction with research participants occurs (Watt, 2007; Denzin & Lincoln, 1994; Maynard, 2003; Hammersley, 2019; Kenney, 2015; Cardano, 2014). Tis is a signifcant aspect to qualitative research because it also leads to a more accurate and valid interpretation of the data (Gouldner, 1968, 1971; Eriksson et al., 2012; Etherington, 2006). From this perspective, a few salient aspects need to be refexively retraced.

First, taking charge of studying the pro-vaccine choice RKC involved a great efort on my part to negotiate an interaction space with them, maintaining high-quality access and improving our relationship by enhancing their trust in me and thus participation in the research. Tis was particularly important with other RKCs as well because, as we will see in Sect. 10.2, such communities are not generally willing to be interviewed and often have confictual attitudes to researchers. During the initial steps of feldwork negotiation, I realised that the issue at stake was not merely a matter of recruiting individuals for interviews, but of negotiating a trusting relationship with them and addressing their initial concerns. Te perpetual risk of being rejected, in fact, emphasises the importance of re-strategising (Peticca-Harris et al., 2016) because achieving the trust of research participants is never absolute or given, but continuously negotiated.

All this meant that one of my ongoing strategies was spending time with research participants and joining their initiatives, from public demonstrations to local online groups and chats on WhatsApp or Telegram. I also invited a few of them to go out for a drink or for a walk in a public garden before the interviews. I met pro-vaccine choice physicians and nurses in hospitals and carefully listened to their reservations regarding the COVID-19 pandemic and vaccination. Keeping in touch with followers of the RKCs studied was certainly a preliminary condition for successful feldwork. However, spending time with them, being responsive to their questions, engaging in discussions, being welcomed into their homes before interviews where we shared lunches, dinners and conversations constantly evoked certain emotions, reactions and experiences that generally foster, rather than hinder, understanding of the world studied (Davies & Spencer, 2010; Behar, 1996). After a few encounters, I realised that these subjective experiences involved in negotiating research relationships with RKCs were not merely 'wasted time' before interviews but primary source of data to be translated, through careful refection, into precious insights (Ploder & Hamann, 2020; Müller, 2016). Tus, being refexive about this ongoing process of negotiation became an integral part of my understanding of them, providing insights into what leads people to engage in challenging epistemic institutions and distrust the knowledge generated by them.

Being welcomed into respondents' homes also helped me to grasp what adhering to, and supporting, refused knowledge in everyday life means. For example, meeting a mother who resigned from her job to home school her children, having lunch with a family which refuses technology in the form of a modern kitchen, TV or even a fridge in order to cultivate a more respectful attitude to life on our planet and so on were signifcant opportunities for trust-building as well as for consideration of the practical implications of embracing refused knowledge in everyday life from an insider perspective. Tis enhanced my understanding of the extent to which refused knowledge regarding health care or well-being is deeply rooted in a specifc world view with profound repercussions on people's everyday lives and requiring great efort. In fact, RKC members frequently showed me their diets and supplements, the scientifc papers they had found and the books they read as well as certain self-produced materials (Fig. 10.1) related to their life choices and support for their claims. Tis challenged me to read the documents and other materials they gave me, watch documentaries regarding the alleged (but not

**Fig. 10.1** Self-produced book by the pro-vaccine choice community entitled *The Hidden Damage.* (Picture taken by the author)

scientifcally demonstrated) link between vaccinations and autism and return to them to discuss what I saw or read.

Before meeting pro-vaccine choice followers, it was important to acquire 'native competence' (Collins, 1998; Laudel & Gläser, 2007), without which I would not have been able to understand their claims, opinions and frames of reference. Indeed, respondents were frequently disappointed when I did not know what they were talking about or, by contrast, were pleased and amazed when I showed that I knew their references or the experts they considered reliable. Being aware of their opinions and claims, as well as their sources of information, was not only a means with which to gain their acceptance but also a way of being seen by them as someone who wanted to know more about them beyond the stereotypes recurrent in the public sphere which discursively frame provaccine choice followers as ignorant, misinformed and irrational.

Tis also gave me a chance to get closer to their point of view on reality. Consequently, for example, one research participant gave me a 'gift': a book with over 500 personal stories of supposed vaccine damage collected by a local pro-vaccine choice community and paid for via crowdfunding (Fig. 10.1). On numerous other occasions pro-vaccine choice followers provided me with their sources or suggested reading to increase my knowledge of their reasons for refusing vaccinations. During the feldwork, some of them also sent me links to blogs, news or videos they considered important on WhatsApp or invited me to join group chats on Telegram in which they shared news, events and discussions. Tis gave me an insight into the substantial amount of time they spend selecting their informative sources by reading books and articles and collecting information they considered relevant in support of their cause.

To support my refexive approach, at such times I collected feld notes to document my experiences with the pro-vaccine choice followers and record comments and discussions when we were not audio-recorded (Eriksson et al., 2012). My feld notes were essential and enabled me to record episodes of rejection and hostility to my invitations to take part in the research.

Furthermore, my feld notes also gave me the chance to refect on how the research context—by which I mean specifc sociocultural events or conditions with the potential to afect the phenomenon studied—shaped my encounters with research participants and the interview setting, as has been noted by many others, such as Phillippi and Lauderdale (2018) and Mauthner and Doucet (2003). Moreover, studies on conspiracy cultures have shown that the research context in which participants, and researchers, are embedded is key to achieving a more in-depth understanding of communities centred on alternative or refused knowledge and belief systems (Harambam, 2020a).

In my case, during my feldwork with pro-vaccine choice supporters, the COVID-19 pandemic was an event that played a leading role in reconfguring my strategies for interacting with research participants, as well as those of my colleagues, requiring changes to research participant recruitment, reconsideration of the form and venue of interviews and a consideration of the changes implied by the diferent settings. In fact, online calls were made in certain cases in accordance with social distancing measures, even if this sacrifced the familiarity that in-person interviews give or, by contrast, opting for in-person interviews whilst being aware that it was potentially dangerous.

Te presence of this global outbreak in the background of our research was an unfortunate circumstance in many respects, despite ofering a unique opportunity to understand the RKCs' viewpoint. Indeed, the strict virus containment restrictions adopted in Italy forced the RKCs out into the open with their diferent approach to life and health (see Crabu, in this book), requiring them to adopt a public stance on mandatory vaccinations and/or anti-COVID norms such as mask-wearing and testing when these became prerequisites to entering social spaces and taking part in public life. Simultaneously, this situation heightened our risk of rejection by the RKCs, with suspicion by them occasionally prompting them to withdraw their availability for interviews, as I will examine in greater depth in Sect. 10.2. It is well-known, in fact, that pandemics exacerbate social relationships between people who support public policy and those who oppose them (Cohen, 1973; Lasco, 2020; Lasco & Curato, 2019). Over the two years of the COVID-19 pandemic, it was easy to fnd public demonstrations and people expressing their disagreement with anti-COVID measures or vaccinations (Fig. 10.3) by leaving messages all over various cities, as Fig. 10.2 shows. Public spaces became RKC confict arenas (see Morsello, Neresini and Agodi in this book) and required greater efort by researchers to build a trusting relationship with research participants, as the next section makes clear.

In my case, the complexities involved in building lasting relationships of trust with pro-vaccine choice supporters for research purposes and the confict characterising the general social context in which my research was conducted prompted me to refexively share such experiences with my colleagues. During the weekly/monthly meetings with my research team, my colleagues and I often shared our feld experiences and these became powerful insights with which to reframe our understanding of our subjective experiences with RKCs and the peculiarities of each community. Moreover, the wealth of experiences reported within these group

**Fig. 10.2** 'Breathe. Their cure is worse than the disease'. (Trento, 12/12/2020, picture taken by the author)

discussions convinced me to implement a distributed refexive activity process (Cunlife, 2020; Gherardi et al., 2018; Lynch, 2017) in the research group once the data collection process had ended. I did so by inviting the researchers to personal interviews with me and they all accepted my invitation. My three in-depth interviews with members of the research teams directly in charge of the feldwork with Stop 5G, Alkaline Water and 5BL communities were designed to collect in-depth accounts of the main problems encountered in building a relationship with RKCs followers.

What I did, in fact, was to ask my colleagues to report episodes that were signifcant for them, focusing on their relationships with the RKCs, thereby highlighting the difculties bound up with recruitment but also fostering refection on the strategies used to cope with the main problems associated with working with RKCs during the COVID-19 pandemic.

**Fig. 10.3** No compulsory vaccination'. Public demonstration against anti-COVID vaccination. (Trento, 5/07/2021, picture taken by the author)

#### **10.3 The Complicated Relationship Between RKCs and Academic Researchers**

In refecting on how the relationship the research team and I developed with RKCs members evolved, two main aspects required particular attention. I focused on how researchers were experienced by interviewees, who alternatively attempted both to question researchers' epistemic authority and to take advantage of it to gain visibility and improve their own reputations. In this sense, researchers were alternatively framed as 'impostors' (see Sect. 10.3.1) and 'epistemic certifers' (see Sect. 10.3.2).

#### **10.3.1 'You are a Charlatan!': Academic Researchers as Imposters**

As I mentioned earlier, the project's researchers were experienced as impostors by RKCs. Woolgar et al. (2021) defnes imposters as engines of indeterminacy, uncertainty and disorder and observing the frictions and disruptions related to them can provide signifcant insights into the constitutive dynamics of the social relations and cultural settings of the communities observed.

'Imposters' are a topic of interest in social science and humanities and Woolgar et al. (2021) simply defne them as individuals who pretend to be someone else to deceive others, thereby disrupting the social order. Suspicions of this sort have a profound impact on people's lives and social interactions within groups primarily because 'imposters mean trouble and stir a wide range of societal responses ranging from intrigue to suspicion, from outrage to horror' (Woolgar et al., 2021, p. 3). For these reasons, in our case, not only did being framed as impostors enormously complicate relationship building with RKC members but it also shed light on the dynamic by which RKCs assess the institutions researchers belong to.

In my case, in fact, each individual interview with pro-vaccine choice supporters resulted in a major, time consuming and occasionally exhausting negotiation during which I was given 'the third degree' and doors were often shut in my face for a variety of reasons: 'we don't want to give more tools to the institutions to fgure out how to convince us to vaccinate', 'we have already trusted you (academics) once and our words were misunderstood!', to cite just a few examples. During one interview I was accused of being 'the perfect pawn in the system' by a doctor who did not want to be audio-recorded. What he meant was that even though I presented myself as a university researcher, in his opinion I was part of a wider power system designed to collect information on citizens out of step with prevailing opinions—for example, on anti-vaccination norms. His accusation was based on the fact that as a young woman belonging to what he conceived of as the 'academic elite' I came across as trustworthy increasing the likelihood that ordinary people would be taken in by me, as he saw it. Being framed as part of the 'academic elites' also often implied being considered an impostor attempting to obtain information on RKCs, potentially leading to refusal to take part in interviews or rejecting all contact with researchers, as one of my colleagues who dealt with the Stop 5G community reports:

Because anyway, I have to say that everyone was very distrustful of me precisely because they identifed us as the 'academic elite' and for this reason it was difcult to gain their trust in some cases. (…) I realised that there was very strong resistance, hostility toward academia or, more generally, toward knowledge not considered 'valid' by them. Te frst contacts I made for the interview (…) were always rejected outright or totally ignored. (Transcript of researcher interview, 10/06/2022)

From the RKCs' perspective, the 'academic elites' were conceived of as having a supreme epistemic authority in science-related decisions and orienting policy as in the case of the COVID-19 pandemic. In certain cases, it seems reasonable that academia can be considered a rather powerful, elite institution (Kelley & Weaver, 2020) and regarded as having epistemic authority in the public sphere. However, for a few respondents, this superiority led to charges of fnancial gain by this purported 'academic elite', much to the detriment of citizens. In fact, the universities and academics in general are often seen by RKCs as part of a belief system created to further the economic and political interests of private biotech corporations (Mede & Schäfer, 2020).

Other reasons underlie RKC lack of trust in academics and their labelling of them as impostors. In certain cases, they believe that academics address their concerns and claims in a manner considered 'unfair' or 'inaccurate' and are consequently sometimes extremely reluctant to engage in trusting relationships with them (Emerson & Pollner, 2001). Another problem, as Chess and Shaw (2015) have argued, is that many academic discourse conventions and everyday practices can come across as mysterious and threatening to lay people and anxieties regarding what academics may be doing with their words was found to be widespread among numerous potential interviewees.

#### **10 Respecifying Fieldwork: Refused Knowledge Communities…**

On other occasions, for example, even if I was not framed as part of the academic elite, as a researcher I was perceived as representing the Ministry of University and Research by which some RKC followers felt ignored, contested and occasionally mocked for their trust in refused knowledge.

From their perspectives, then, researchers are impostors because they contribute to supporting a power system in which institutional science serves the power and interests of the few. In many cases, this led to what researchers perceived as great hostility to them in their attempts to interview RKC members.

In my case, this was clear when I asked them to read and sign the informed consent form (Fig. 10.4).

While the interview consent form (Fig. 10.4) is a preliminary and mandatory step in interviews in order to guarantee participant data anonymity, it was often viewed with suspicion by interviewees, with several refusing to sign it. One of the reasons for this was related to the symbolic

#### **Fig. 10.4** Interview consent form

dimension of the form: the logos of the universities involved in the study, the reference to the EU's GDPR 2016/679 regarding privacy, which were considered in a few cases as 'proof' that we were imposters attempting to deceive them, because most of our interviewees no longer acknowledge delegation to the EU to protect their privacy and sensitive data. In certain cases, the phrasing of the form was framed as evidence supporting my supposed impostor role in their eyes:

A few days after the interview both S. and her husband stopped answering my phone calls.

I remained on hold. After several attempts to contact S., she fnally answered. Unfortunately, she had decided that I was no longer worthy of her trust. I was hurt and frustrated. I had worked so hard for them to trust me: we had had lunch together, I had played with their daughter, they had told me about their life together and the work difculties they were going through. Tey ofered me apple pie and invited me to the park. S. lent me an important book: a collection of witnesses from families claiming vaccine harm. I was supposed to give it back to her when I returned to interview her husband. What went wrong? S. said that after reading the interview consent form again, they got worried. Te label 'alternative knowledge' had not convinced her. (…) It is an ongoing negotiation, and I don't know what to do anymore. (Transcript of author feld note, 08/04/2021)

Despite our eforts to use inclusive language mindful of the cultural and social specifcities of the communities studied certain words were perceived as signs of 'impostering'—for example, as reported in the above feld note, the label 'alternative knowledge' was regarded with suspicion by the interviewee, who went as far as withdrawing her consent. During discussion of this at our research team meeting we concluded that the respondents did not conceive their knowledge in terms of 'otherness', or as an 'alternative' to ofcial knowledge, but rather as knowledge that was legitimate, per se but rejected or denied by the establishment, such as universities and other epistemic institutions.

Tis was tangible in the use of the 'no vax' label. Although other research (Francia et al., 2019) has found that 'no vax' or 'anti-vax' are the most common labels in the scientifc literature to refer to communities fghting compulsory vaccination, during our interviews I noted that the term preferred by these communities is pro-vaccine choice which they see as better emphasising the fact that they are not 'against' vaccination per se, but 'for' freedom of choice.

Hence, using what they consider as the wrong expressions, such as mainstream media terms (e.g. 'no vax' is frequently used in newspapers; also see Chap. 9 by Paolo Giardullo) can be framed as the language of the enemy and researchers using it are thus likely to be seen as impostors.

Moreover, the symbolic meaning that certain objects acquired as a consequence of the COVID-19 emergency played a central role in framing researchers as impostors or, at least, not worthy of trust. Face masks and vaccinations were potentially controversial objects for RKCs and crucial in defning the research setting. Tus, when these were physically present during interviews, they were often used to 'test' researchers' reliability and I soon realised that removing my face mask or not being vaccinated were 'keys' to accessing their trust. For pro-vaccine choice supporters, in fact, wearing a face mask during an interview was not perceived as a good sign: whilst some respected researchers' freedom of choice in wearing a face mask, it was still conceived as a kind of acquiescence to the 'power' of the state, a symbol of fear, rather than an individual protective device against contagion. On the other hand, removing a face mask during an interview was considered a demonstration of 'free thinking' and not being vaccinated also implied being 'one of them'.

As we have seen, the COVID-19 pandemic had a profound impact on my research action and, in few cases, I opted for online interviews on Zoom or Skype. However pro-vaccine choice supporters preferred to be interviewed in person on a great many occasions. For them an in-person meeting was not a vehicle of infection but rather the only way for them to trust researchers and reduce the risk of them being impostors: the pandemic objects thus defned the limits and potential of interaction within the interview setting. Te result of this for me was constant tension between my research-related requirements and my desire to protect myself from infection. Te risk of being perceived as an 'impostor' by RKC members required constant interview renegotiation. Nevertheless, I chose to conduct interviews in-person, attempting to follow social distancing rules and avoid contact with my loved ones for the rest of the week during the most difcult phases in the COVID-19 pandemic.

Tis negotiation process also concerned my personal values and beliefs, for example, when I introduced myself, I was often asked: 'whose side are you on?'. Tis highlighted that a 'neutral posture' does not exist(Scottet al., 1990), even when assuming a symmetrical perspective (see Chap. 2 by Federico Neresini). To avoid the risk of being framed as an impostor, I often answered this question by explaining that my aim was to understand their views without questioning the veracity or accuracy of their claims. I always told them that my interest was understanding RKC viewpoints even if I was fully vaccinated or did not agree with them regarding the pandemic. Tis response did not always satisfy interviewees. In the worst case scenario it was considered a lie, since I was assumed to be hiding my opinions from them whilst on other occasions it was key to establishing a relationship of trust and avoiding being framed as an impostor.

I adopted many strategies to increase my chances of being granted interviews rather than being framed as an impostor. One of these strategies consisted of being introduced to pro-vaccine choice supporters by people who were not part of what they considered the 'establishment'. Tese 'ordinary people'—not what they regarded as corrupt academic elites (Mede & Schäfer, 2020)—were trusted work colleagues, forestkindergarten teachers, paediatricians in favour of freedom of choice in vaccination, members of RKCs and participants in public demonstrations. Involving people with whom interviewees had established a relationship of trust as gatekeepers served to increase the likelihood of a positive reception by RKC members.

However, even if enrolling gatekeepers to acquire more information or to be accepted by research participants is very common in qualitative research, this is often omitted with the aim of providing a more linear and 'acceptable' version of research design (Fine, 1993). On the other hand, in order to recruit 5BLs or Alkaline Water exponents, my colleagues chose to participate in their online and ofine training events and feedback was thus a long time in coming. Moreover, researchers working with Stop 5G communities took part in public demonstrations, a strategy that elicited quite a few misunderstandings, as I will report in the next section.

As regards pro-vaccine choice community members, as I discussed in Sect. 10.1, spending time with these was of use in overcoming the risk of being considered an impostor. Having dinner, a drink or breakfast together, going for a walk or suggesting lunch was a way of gaining confdence and overcoming fears.

#### **10.3.2 Are You Recruiting Them or Are They Recruiting You? Exploiting Researchers**

Rather than being suspicious or hesitant regarding researchers' afliations, some RKC followers attempted to make use of them. In certain cases, I observed that researchers were framed as epistemic resources belonging to established public institutions whose research authority interviewees attempted to make use of to increase acceptance of refused knowledge in the public sphere.

In such cases researchers were made use of by RKCs as 'epistemic certifers', i.e. individuals or groups with specialised skills and knowledge used to assess the credibility or reliability of scientifc knowledge claims (Collins, 2004). In fact, epistemic certifers play a crucial role in the scientifc enterprise, as they are responsible for determining which claims and evidence can be considered trustworthy. Academic researchers play an important role in the production and dissemination of expert knowledge and can be considered epistemic certifers in the sense that they are also recognised as experts in their felds (Martin, 1991). Tus, through their expertise, researchers contribute to establishing and maintaining the standards of credibility and reliability that are necessary for scientifc knowledge to be accepted and trusted (Latour, 1987; Latour & Woolgar, 1986; Law, 2004). Tis is also true for RKCs when they attempt to exploit researchers' ability to foster the acknowledgement of refused knowledge claims in the public sphere.

I will now refexively reconstruct the various ways by which certain RKC members attempted to make use of researchers as epistemic certifers. Considering pro-vaccine choice RKCs, for example, I noted occasional attempts to access researchers' networks—i.e. gain access to a possible audience by leveraging a researcher's reputation. An example is what happened to me with a pro-vaccine choice doctor who was initially willing to be interviewed but then asked me to promote the contents of the interview within my academic network and share the contents of the interview with colleagues to fnd sympathisers, as I reported in my memos:

Following a telephone contact with G., a doctor, he asked if I could promote the content of the interview through my network of academic contacts. I was surprised. Tis aspect is very interesting for me as it denotes the need for credibility even within academic networks. Looking for credibility among academics can be interpreted as a desire to position themselves within spheres with the potential to increase follower numbers with the interview being used as an entry-point and my academic degree and afliation as a form of legitimacy. I had to explain to him that the interview would remain anonymous and would not be releasable. He seemed a bit disappointed with this. (Transcript of my feld notes, 07/03/2021)

Tis is important for the RKCs, as their knowledge claims compete with scientifc knowledge, often through various mimesis strategies (see Chap. 2 by Federico Neresini). In this context, making use of researchers is central to legitimising claims in the public sphere. In addition, mobilising those perceived to be 'independent scientifc experts' (e.g. not colluding with the scientifc, political and economic establishment) is a common RKC strategy designed to increase the credibility of their claims (Crabu et al., 2022). In fact, they strive to exploit not only the researcher's networks but also their credentials.

Indeed, attempting to take advantage of an interviewer's credentials such as academic qualifcations and afliations—is a specifc strategy employed by certain RKC members to improve their authority and legitimacy within their communities. Tis is particularly true for the Alkaline Water RKC that mainly comprises sellers of devices serving to alkalinize water and representatives of specifc brands. For these, an interview is an opportunity to gain credibility amongst the alkaline water community's members. Tere is nothing new about researchers being seen as epistemic certifers or certain respondents attempting to exploit their network and/ or their professional credentials, as similar credibility attribution methods have been used in various scientifc or alleged scientifc knowledge forums (Collins & Pinch, 1979; Collins, 1998). Te diference lies in the things the above cases showed researchers were 'asked'—providing contacts or spreading messages among professional networks and this complicate the interaction with RKC.

In other cases, RKCs engaged in eforts to 'recruit' researchers, during interviews and also afterwards:

Our problem during feldwork was that they wanted to 'recruit us'! Tey wanted to legitimise their knowledge through our research, and this ambiguity was difcult to manage. Because the frst thing we do is try to be accepted by interviewees … but actually they are so happy to give us information, they are very accommodating with researchers. We were very careful not to be recruited, but ambiguity regarding this was difcult to avoid. During interviews, they would then share the news on Facebook, for example. (…) Tey also used, or tried to use, our institutional scientifc credentials to legitimise their knowledge. So, many times we risked becoming 'tools' for their 'patchworks of knowledge'. And this was something we had to bear in mind not to avoid building relationships with them, but to avoid being recruited or used to support their refused knowledge. Tis was a crucial point. (Transcript of researcher interview, 22/06/2022)

Te risk of being recruited as an epistemic certifer was difcult to avoid in certain situations, because building a relationship of trust with interviewees was important to the success of the interview (Kuehner, 2016) and we thus attempted to be always open to such requests. Tis was difcult to achieve on various occasions, however, because RKCs often use social media pages such as Facebook to promote events, activities and news (Bory et al., 2021, 2023) and this also involved meeting with researchers. On a couple of occasions followers of Alkaline Water RKC members created online posts and shared these among their online communities, with interviews being presented as personal successes for respondents, as well as important achievements for the community, as the post below makes clear:

(Text from the post above—Fig. 10.5) One way or another, it's back to university!!!

Giving my contribution to a Federico II University of Naples Research project on Ionized Alkaline Water in Lifestyles, Health, and Wellness was an honour. Over three years, we have helped hundreds and hundreds of

**Fig. 10.5** A member of the Alkaline Water community, sharing a picture taken during a Zoom interview, FB page, 01/04/2021

families … and 2021 has got of to an even better start!!! We have already changed the habits of many. Tank God always! (Quotation from a post on an Alkaline Water FB page, 01/04/2021)

Te post was also accompanied by featured personal images (Fig. 10.5) in which users portray themselves as worthy of trust on the basis of interviews by academic researchers. Gaining public recognition for RKCs thus also involves recruiting epistemic certifers belonging to established scientifc institutions.

Other recruitment attempts, specifcally reported by researchers dealing with No-5G RKCs, involve eforts to turn researchers into activists.

On certain occasions, interest in RKC claims shown by researchers was assumed to be somehow a tacit request to become part of their social world. As other studies have also reported (Harambam, 2020a), the risk in adopting an agnostic perspective is that researchers can be portrayed as lending support to such causes from mainstream media or academics. In our case, specifcally with people fghting to block the installation of 5G antennas, researchers took part in public demonstrations to meet privileged witnesses for interviews and this created quite a few misunderstandings with respondents, as one researcher reports:

When they try to convince researchers of the validity of their scientifc positioning, you get used to it and play along. But once I felt guilty. It happened when I saw an interviewee during a demonstration against 5G and another time also with a very nice lady who was involved in the Italian '68 movement. Tey talked to me about young people's lack of interest in health-related issues, and so saw my interest as a researcher in the 5G topic as notable. I had the feeling that it was an opportunity for them to recruit me, as a potential young 'Stop 5G' activist! I felt almost guilty about that because that was not my intention. I never said to them that I was interested in becoming an activist! I always said that I was a researcher exploring the Stop 5G issue, but I never said that I wanted to become an activist! But still, they interpreted my interest in the topic and our meetings as an opportunity to recruit me (as an activist). (Transcript of researcher interview, 14/06/2022)

As the researcher reported, meetings with members of the Stop-5G RKC were often turned into recruiting opportunities for the latter in which researchers were viewed as allies, as epistemic resources via which to strengthen the RKC. However, some of those interviewing experts on the 5BLs had other views:

Te experts (members of 5BLs communities) probably wanted to exploit our interviews as a form of legitimisation of their positions or at least as an 'alternative amplifer' to overcome a series of situations in which they failed, for example, with the media. Indeed, they often claimed that the public debate and the media demolished them or were very critical of them. (Transcript of researcher interview, 12/07/2022)

As with the Alkaline Water RKCs, 5BLs experts use interviews to spread their message and researchers as epistemic resources with which to legitimise their claims, often after unsuccessful earlier attempts to spread their message within the mainstream media. Tey frequently felt betrayed, and occasionally ridiculed, by journalists and public opinion, as we have seen. In the above case, 5BL followers also viewed interviews with researchers as opportunities to enhance and refresh their reputation in the public sphere.

#### **10.4 Conclusion**

As Fine (1993) noted, frequently in qualitative research the process of conducting feldwork remains hidden in the backstage of social research. Analysis is private research group activity and thus feld notes and other related materials collected and produced by researchers are rarely available. Tis makes the role of our biographies and social positions as researchers implicated in the act of exploring and understanding even more opaque (Geertz, 1968, 1973; Back, 2004). But what happens if we restore the epistemic value of data collection as a complex and non-linear process of negotiation with research participants? What is to be gained by refexively analysing researchers' feldwork experiences?

In my case, it would seem to increase our understanding of the concerns and motivations that drive people to dispute and distrust scientifc institutions. As Latour and Woolgar (1986) showed in *Laboratory Life*, exploring and reporting the means by which observers are conceived, addressed and occasionally even labelled by research participants reveals important aspects of scientists' culture and epistemic assumptions. Similarly, observing how researchers were framed by RKC members was of use in understanding the implications and practices of refused knowledge legitimisation as well as casting light on the ambiguity of this process. For example, it is clear that, on one hand, researchers were sometimes viewed as 'impostors' and, thus interviews rejected whilst on the other hand, the opposite can also occur with researchers being framed as 'epistemic certifers' and thus subjected to more or less overt attempts at exploitation or recruitment by RKC members.

Refexively considering that researchers are framed as 'impostors' or 'epistemic certifers' reveals the way that RKCs often demonstrate a great appreciation of science which takes the form of idealised science that is not personifed by us as institutional scientifc spokespeople. By contrast, when RKCs attempt to enrol us as 'epistemic certifers' or activists it implies that they are often and sometimes reluctantly considering science and its institutions as a valid resource in their efort to legitimise their knowledge claims.

Tus, refecting on how the researchers experienced the feldwork was an important way of examining RKCs' ambivalent relationship with mainstream epistemic authority in greater depth. Moreover, refecting on the relationship between researchers and participants also throws light on the way that some of the legitimisation processes pursued by RKCs can be somewhat similar to those in action within the scientifc research community. For example, the alignment of actors in order to reinforce the epistemic authority of claims and the use of epistemic certifers to establish reliability also play a fundamental role in science.

Our refexive exercise also highlighted that establishing a high-quality relationship with RKCs was a matter of spending time with them, keeping up-to-date about their theories and the reasons underlying their claims, being aware of the contextual elements potentially afecting our relationship with them, such as COVID-19 policies, and thus, overcoming the binary 'science'-'conspiracy theory' dichotomy (Saford et al., 2021). In challenging or exploiting epistemic authority, RKCs are not simply interested in avoiding sanctions or the consequences of not adhering to certain social norms and public health policies nor in irrationally pursuing theories spawned from online misinformation, but rather in legitimising refused knowledge in the public sphere with the aim of gaining supremacy in certain epistemic battles—such as the 'Corona Truth War' (Harambam, 2020b), the vaccinations controversy and the installation of 5G antennas—and being acknowledged as having the legitimacy to contest them in light of the refused knowledge they produce, promote and support.

### **References**


**Open Access** Tis chapter is licensed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/ by/4.0/), which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence and indicate if changes were made.

Te images or other third party material in this chapter are included in the chapter's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the chapter's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder.

# **11**

# **Conclusion: Is It Really Possible to Take the Floor (Agnostically) About Refused Knowledge?**

**Federico Neresini and Stefano Crabu**

### **11.1 Conclusion: Is It Really Possible to Speak (Agnostically) About Refused Knowledge?**

Nowadays, the governance of issues with in-depth technoscience involvement has moved to the forefront of both the political agenda and the public debate. Against this backdrop, it would seem that all scholars (be they rooted in social science, humanities or the natural or physical sciences) agree on the need to carefully open up the science-society nexus for inspection, with all its ambivalences and conficts. Whatever their varying research purposes and needs in analysing this nexus, what identifes a critical point of attention is the heuristics potential of the various analytical stances scholars may adopt, from time to time, in order to discern the social conditions under which diferent groups of people

F. Neresini (\*) • S. Crabu

Department of Philosophy, Sociology, Education and Applied Psychology, University of Padova, Padova, Italy

e-mail: federico.neresini@unipd.it; stefano.crabu@unipd.it

F. Neresini et al. (eds.), *Manufacturing Refused Knowledge in the Age of Epistemic Pluralism*, https://doi.org/10.1007/978-981-99-7188-6\_11

confer credibility and trust on specifc knowledge claims and knowledgemaking practices, whether they are grounded within the boundaries of science or otherwise. Tis implies properly examining the interplay between science—and the institutional arrangements supporting it—and those who engage in eforts to elaborate knowledge claims which are alternative or opposed to science and its plausibility in orienting decisionmaking processes around issues afecting collective life. Tis requires a research framework that—as we outlined in the introductory chapter of this volume—carefully takes into account the positionality of scholars observing concerned instances of science contestation, and how the pertinence and scientifc adequacy of the research questions are defned.

As we have tried to highlight throughout this book, research into challenges to science and techno-scientifc expertise is not necessarily novel for scholars, especially those concerned with science and technology studies (STS). What is—at least partially—new is the intellectual trajectory adopted here, a trajectory that has taken the 'Going Out' call issued in a famous essay by the same name by Harvey Molotch (1994) seriously. Tis call urges us, as scholars, to venture beyond the comfort zone of our knowing niche, since without a deep and immersive relationship with the phenomena we study we are incapable of mobilising suitable analytical lenses to avoid simplistic representations and interpretive blind spots.

From a methodological point of view, responding positively to Molotch's call is undoubtedly a challenging task requiring us to refexively reconsider our positionality as professionals embedded within a prevailing epistemic institution, i.e. academia. In fact, it entails interacting with social worlds that consider our academic profession and institutions as part of the problem they need to address and—whether we like it or not—to solve sometimes in a conficting rather than negotiating way. Indeed, one of the most interesting awarenesses which progressively emerged during the feldwork on which this volume is based is that we cannot understand RKCs without also learning something about ourselves. And when we say 'ourselves', the reference is at least twofold.

Firstly, by 'ourselves' we mean subjects who do not self-identify as follower of RKCs. Hence, while contributing to the framing of RKCs as actors holding knowledge rejected by science, we position ourselves reciprocally on the side of the prevailing epistemic regimes. Secondly, and more specifcally, by 'ourselves' we also mean 'subjects-sociologists-STS scholars' identifying refused knowledge as suitable research objects with which to disentangle the multifaceted interplay between knowledgemaking practices, expertise and society. We thus need to ask ourselves what we have learned about RKCs and ourselves.

#### **11.1.1 Refused Knowledge Communities and Us**

Tis book has highlighted that RKCs are not a homogeneous entity but rather a kind of *seamless web*: an articulated and diferentiated universe with individual instances and cultural values, ethics and politics which sometimes confict with one another. Hence, they are peculiarly characterised by a multifaceted internal articulation of human and non-human agents, plural positions on science, public institutions, health-related policies and, in general, regarding the social and natural world which we, as humans, are engaged in.

It might rightly be objected that this is not a ground-breaking insight. However, it is only by attempting to consider all the specifc RKC perspectives that we can move beyond the standardised and simplistic interpretative lens we are confned to when the *going out* approach is not followed. Tis latter is an approach which allows us to avoid hastily dismissing RKCs as irrelevant minorities made up of ignorant, irrational individuals who have naively fallen into the fake news trap, or artfully seek to discredit science and its institutions. In other words, an approach which avoids referring to common sense as an explanatory factor. Furthermore, the *going out* approach is insufcient without an agnostic stance, which requires a radically symmetrical perspective to observe an empirical phenomenon that is rich in nuances, corresponding to ambivalent and plural stances on science and its institutions and representatives. Tese ambivalences can be animated by diverse and, to a certain extent, legitimate doubts and questions. Sometimes, these doubts and questions are so legitimate that they might easily be shared by all of us. Surely it is legitimate to assert that science governance and defning the scientifc agenda should be transparent and that relevant stakeholder engagement is desirable? Surely it is legitimate to demand that the voice of citizens and concerned groups of people should be listened to more than they currently are when decisions of collective relevance need to be made, especially when the scientifc community is itself not in full agreement on them? Is it not true that even in government institutions, it is now generally accepted that citizens are not mere consumers of scientifc knowledge and technological outcomes, but active actors with a right to take an active part in public scrutiny and co-defnition of techno-scientifc issues? Accusing those who engage in a contentious relationship with science of demagogy, irrationality or scientifc illiteracy is no more than a shortcut to not taking seriously the fact that the interface between science and society is increasingly bound up with the quality of democratic processes.

Te realm of refused knowledge is also far from static: RKCs operate within a constantly changing dynamic which shifts together with its historical, political and socio-technical contingencies. Such contingencies potentially rearrange relations between RKCs themselves, as well as with other social worlds (i.e. the scientifc institutions and their representatives). In this regard, the COVID-19 pandemic situation is a signifcant post-normal science landscape Funtowicz and Ravetz 1993, both showcasing RKC dynamism and highlighting processes that would have otherwise been more difcult to understand. Indeed, the polarisation mechanism at work during the pandemic, especially within the media ecosystem at large, highlighted the role played by the normative labelling of RKCs (as irrational enemies) within the subjectivation and countersubjectivation processes applied to both the followers of refused knowledge and those with whom they interact 'from the outside' (i.e. once again the scientifc institutions and their representatives). Te rejection by scientifc institutions of the knowledge elaborated at the fringes of, or outside the confnes of, science is, in fact, the basis for RKCs' processes of self-recognition and belonging. At the same time, the rejection of other, competing, sources of knowledge contributed, in a complementary way, to reducing the uncertainty surrounding the Covid-19 pandemic. Identifying a sort of dangerous and morally reprehensible enemy (i.e. subsuming all potential critiques to science under the one-size-fts-all label of 'irrational critique') strengthened the authority of a scientifc knowledge which faltered during the pandemic under the weight of the urgent demands arising from the need to deal with a situation that was, in many respects, unprecedented and replete with uncertainty.

Our professional and disciplinary stances were also at stake in this interplay. Te constant exercise of refexivity that accompanied our research work made us increasingly aware that the sociological vision, like other disciplinary analytical visions, is bounded within a *hic et nunc* (here and now) standpoint that inevitably prevents it from remaining impartial. It might be said that this awareness took shape through two phases, although this does not fully capture the complexity and difculties that arise in empirically studying refused knowledge. We initially viewed the relevance of the symmetry principle as a methodological compass. Without distancing ourselves from mainstream assumptions prejudicially dismissing RKCs as a phenomenon rooted in a lack of scientifc literacy or an irrational mindset, we would not have been able to fully comprehend the processes that lead people to legitimise and endorse knowledge rejected by the scientifc and public institutions. But this was relatively straightforward. What required slower and more challenging maturation was the realisation that we, too, were contributing to the co-defnition of RKCs simply by choosing them as the object of our empirical enquiry. Tis realisation involved recognising our role, as researchers, in shaping the narrative and interpretative frameworks of these refused bodies of knowledge. It required acknowledging the power dynamics at play and critically refecting on the potential implications of our research and its possible impact on the way RKCs are perceived and understood. Tis process of self-refection regarding our own position within the feld under scrutiny was a crucial and ongoing aspect of our research journey.

Tis may seem superfcially simple or even banal, but epistemologically it is more radical and its implications may be more profound than those of the decision to adopt a symmetrical approach. Te most signifcant consequence is that even a polished and symmetrically oriented sociological perspective cannot claim to be entirely 'innocent' or impartial—that is, it is not immune to the processes of demarcation that classify actors into hegemonic and subaltern groups, according to certain ethical and moral values. It may involve a juxtaposition with strong performative implications. Understanding the mutually constitutive relationships between RKCs and their 'polemical others', namely scientifc communities, requires considering researchers engaged in feldwork as actors taking part in the defnition of the phenomenon itself. Studying RKCs is not simply a matter of their denotative representation but rather opens up the analytical task to an only partially manageable process that contributes to the public construction of refused knowledge as both research object and social concern. Te relationship between researchers exploring refused knowledge and RKCs themselves is therefore performative, in the sense that representations of RKCs are inevitably drawn into the co-defnition of their context of action and societal relevance.

Another aspect related to our research work concerns the motivations and drivers underlying the process by which credibility and trust are conferred on refused knowledge. Once again, our understanding may seem banal. But this point is important in shining the spotlight on the fact that a body of knowledge refused by science can be recognised as reliable by people not only because it is capable of addressing issues neglected by institutional actors but also for its ability to support everyday life meaning-making processes afecting biographical trajectories. Tis is particularly true where illness-related refused knowledge is concerned, as this inevitably brings up painful and deeply troubling contingencies.

Te relationship between a biographical contingency (e.g. a condition of malaise or illness) experienced as highly problematic and difcult to solve, and the search for knowledge and answers outside what is generally accepted in our socio-cultural context should not be underestimated for at least two reasons. Firstly, because the attempt to make sense of uncertainty and concerns such as health and illness issues by resorting to refused knowledge has a great deal to tell us about some of today's most signifcant socio-cultural trends. If, in fact, some segments of our societies turn to alternative interpretational resources for answers to emerging issues and concerns, it means that such answers are not (readily) available within institutionally recognised expertise. Tis may mean both that we live in a world in which scientifc knowledge and tools are sometimes incapable of supporting people in situations of difculty or sufering, and that some of the interpretational resources elaborated by science—and which have proved to be valid in the past—have not been efectively replaced with alternatives. Secondly, the search for refused knowledge highlights the relevance of highly existential questions, however questionable or even dangerous the way RKCs attempt to address these may be, given the potential consequences of mobilising refused knowledge on health and well-being. Indeed, as we have argued, the motives behind the endorsement of refused knowledge can highlight the need for resources capable of making sense of controversial situations or reducing the potential uncertainty for everyone, not just RKC members. And it is no accident that when the level of uncertainty increases due to particularly destabilising events such as a pandemic, the degree of attention to alternative forms of knowledge also grows.

Our arguments thus far also increase our understanding of the similarity we have observed between the legitimisation strategies mobilised by both scientifc knowledge and refused knowledge. However, this similarity leaves the question as to where the demarcation line between scientifc knowledge and refused knowledge is to be located unanswered: Is it merely a matter of epistemic positioning and labelling? Is it solely a matter of a diferent distribution of power, that is, the authority and moral force to defne a situation, and then establish how to understand it by mobilising a specifc worldview? Te answer to these questions is apparently 'no'.

But if we answer the above questions negatively, are we obliged to accept a reductionist explanation such as 'science is true, while refused knowledge is false'? We believe we have demonstrated that analytical alternatives are possible, however less easy to deal with these may be. Indeed it is, at the very least, not the sociologist's task to suggest what is true or false from a scientifc standpoint but rather to shed light on the social processes by which bodies of knowledge are accorded legitimisation and credibility, whether for the scientifc community or for a community of lay people discussing the basis for the decisions such as whether to vaccinate their children.

### **11.2 "Taking a Stance Without Taking a Side": Testing the Harambam Methodological Stance**

At this point, however, we may posit another problem, already well outlined by Jaron Harambam (2020), as we saw in the introduction to this book: is it 'taking a stance without taking a side' (p. 235) possible?

In translating Harambam's instance to our specifc feld of inquiry, we may ask to what extent it is legitimate to speak about refused knowledge in a sociologically relevant manner without necessarily dismissing it as (dangerous) informational junk. Te tone and content of the public debate during the COVID-19 pandemic certainly exacerbated the rift between the knowledge accepted by scientifc communities and institutions, and the knowledge they refuse. It thus shaped a strong, and to certain extent naive, polarisation between *science* and *anti-science* that still makes it difcult to speak symmetrically about refused knowledge without running the risk of being classifed as supporters of it. However, the rift between scientifc and refused knowledge per se is not new; the public debate during the COVID-19 pandemic simply amplifed it and made it more publicly visible. Such a rift existed even before the pandemic, although it may have been more latent and less radical in form. Hence, what is it which makes it difcult to 'take a stance' from which to analyse refused knowledge symmetrically, exploring the point of view of its supporters, 'without taking a side'? In our view, the challenge involved in resolving this (possibly only superfcial) contradiction depends to a large extent on the permanence of a series of ready-made normative prejudices and interpretative blind spots regarding the current challenge to science as well as about refused knowledge.

On the basis of our research work, we can identify some of these more persistent interpretative blind spots. Here, we will consider the exemplary case of those known in Italy as *anti-vaxxers* (in this book called *pro-vaccine choice*). In this regard, it is worth noting that the idea by which those casting doubt on vaccines are necessarily hostile to science at large is not empirically founded. Quite the opposite: it is scientifc experts or exponents of science which summarily dismiss the public quest for transparent information about immunisation policies as irrational and stemming from ignorance. By contrast our observations show that scepticism of immunisation policies rarely associates with a rejection of science per se. Similarly, vaccine refusal is often not defnitive or irrevocable. Te term *vaccine hesitancy* was coined precisely to indicate an attitude of concern regarding the safety and efcacy of vaccines. Tose simply postponing vaccination are similarly hesitant, as is often the case of routine paediatric vaccination, or those deciding to accept only certain types of vaccines. It is, therefore, a nuanced attitude that often indicates a higher level of awareness about science and the need for understanding and discussion around public health policies.

However, there is still a preference for considering RKCs in a reductive and thus misleading way, for example, by mobilising the idea that those who question certain pieces of scientifc knowledge must necessarily be contrary to science as a whole. For RKCs, the opposite is not infrequently true, as we often fnd a high degree of trust in science in general amongst them. Doubts about certain specifc scientifc issues, particularly those related to health and well-being, often arise because of direct or indirect personal experiences, such as a pharmacological treatment that has caused severe side efects, or a diagnosis of a rare disease for which there is still no efective treatment, leaving patients feeling lonely and powerless. It is also not uncommon for patients and their families to perceive a lack of attention to their identity as individuals, their emotional spheres and the socioeconomic constraints that may limit access to health services and therapies from the biomedical milieu. Tis perception can fuel the belief that medical and healthcare professionals (as well as their knowledge and technologies) contribute to an increasing dehumanisation of patients and the caregiving relationship. However, all of this does not necessarily imply a rejection of science in general. It is not surprising, indeed, that the same RKCs often advocate for a 'purer' science, that is a science free from political interference and economic interests. Tis is undoubtedly an idealistic, naive view of science but it demands for greater transparency in the scientifc knowledge validation processes, especially when such knowledge becomes the reference basis for public health policies.

A second blind spot deserving of our attention relates to what public communication of science and technology scholars have called the *defcit*  *model* Trench (2008). Te idea underlying this model is as simple as it is misleading: people adopt sceptical attitudes to science and engage in irrational behaviours because they lack adequate scientifc literacy. Despite widespread criticisms of this approach for its abstract, simplistic and linear conception of the relationship between science, technology and society, it remains deeply ingrained in our cultural context, if only because it benefts from the simple explanation factor (poor scientifc literacy) for a complex problem (criticism or a sceptical view of certain pieces of scientifc knowledge) combination. It is not surprising, then, that we also fnd the *defcit model* being used to account for RKCs. According to this simplistic approach, those who belong to these social worlds hold scientifcally unfounded knowledge due to their lack of education or limited scientifc literacy. However, RKC members encompass many individuals with medium-to-high educational levels, including some doctors and researchers. Furthermore, if we consider the most extensive network of relationships in which RKCs are embedded we sometimes also fnd individuals with strong scientifc credentials (see Chap. 7).

Another interpretative blind spot can be summarised as follows: anyone distrusting science is a conspiracy theorist. Although RKCs share a widespread scepticism of pharmaceutical or biotechnology companies, as well as institutional bodies such as national and supranational medical agencies, this does not mean that they systematically justify their critical claims with broad conspiracy theories. It is, in fact, common for RKCs to express strong reservations or harsh criticisms of the merits of conspiracy theories. Terefore, using this concept to stigmatise RKCs risks hindering understanding of their concerns. For example, those who claim to sufer from *electrosensitivity* argue—against the scientifc consensus—that further scientifc inquiry into the link between a set of physical and psychological symptoms and the exposure to electromagnetic felds is needed. Terefore, they do not rely on conspiracy theories to support their hypothesis but rather seek support from doctors and researchers in their eforts to reorient the scientifc agenda on this topic.

Te reductionist interpretation of RKCs as a feld delimited by scientifc illiteracy, ignorance and irrationality is also guided by a conception that it is only scientists who have the right to *be considered* experts, especially within the media ecosystem. Generally speaking, when we refer to an expert, we imagine someone with specialist expertise in a specifc and well-bounded scientifc domain. However, as we saw during the COVID-19 pandemic, the experts called upon to speak in the media or involved in advisory committees supporting policymakers were diverse fgures, such as virologists, infectious disease specialists, epidemiologists and data analysts. Tese were asked to come up with answers not only on the nature of the virus and its difusion on which they had specialist knowledge, but also about matters such as school closures or restaurant access restrictions, i.e. issues with economic, social and ethical implications in which their opinions were not inherently more authoritative than those of other people. Tis way of exercising techno-scientifc expertise in the public sphere assumes that scientists are to be considered *experts* on everything per se and conversely, that all that expert status is automatically accorded to scientists, whatever their specialisation.

However, the seminal work by Funtowicz and Ravetz (1993) on postnormal science and many other related contributions about the governance of science and technology (see Epstein, 1996; Jasanof, 2007; Weingart, 2023) underlines that we should be aware that where decisions with potentially powerful implications for a variety of social groups and categories are concerned, diferent types of expertise can play a relevant role in supporting the alignment between techno-scientifc development and society. It is not only techno-scientifc expertise that matters, but also knowledge rooted in the everyday experience of groups of citizens, workers, families and non-governmental organisations directly involved in the contexts afected by these decisions. Ignoring people's experiential knowledge and expertise can lead to poor decision-making unaligned with the values, needs and requirements of the social contexts in which they are to be implemented.

Underestimating the knowledge of those who, as non-scientists, are not publicly recognised as *experts* is therefore a risk not only for science itself but also for its social implications. Hence, the recent COVID-19 pandemic provided an opportunity to analyse the consequences of an overly simplistic conception of what counts as expertise. Te policies implemented in response to the emergency were largely justifed on the basis of scientifc evidence provided by dedicated advisory bodies made up of techno-scientifc experts. Tus, for example, policies regarding the vaccination campaign or the ensemble of prescribed norms (e.g. physical distancing measures or mandatory use of personal safety protection devices) to contain the spread of Sars-Cov-2 were justifed as linear, neutral and self-evident emanations of scientifc knowledge. Tis created the conditions by which those criticising public health policy could be stigmatised and excluded from legitimate public debate as inherently antiscientifc, and thus irrational. However, such a rhetorical strategy is based on an idealised and technocratic representation of the relationship between scientifc knowledge and public regulation. Scientifc knowledge is, in fact, rarely directly actionable in the realm of policymaking. On the contrary, the process that leads from scientifc knowledge to political decisions is always open to negotiation between the interests and political positions of a range of stakeholders. As a result, translating scientifc knowledge—for example, knowledge about the nature of Sars-Cov-2, its transmission mechanisms and its efects on human beings—into public policies to achieve specifc objectives such as limiting the difusion of the virus should involve marshalling a wide range of expertise and knowledge to govern the economic, environmental, social and psychological implications of the policy choices adopted. In any event, such decisions can be contested without necessarily directly implying questioning the scientifc knowledge itself.

Te various interpretative blind spots briefy outlined thus far contribute to defning a situation that seems to leave no way out: an idealised view of our relationship with science, an uncritical reliance on the defcit model, a metonymic rhetorical strategy that homogenises RKCs into ignorant conspiracy theories, a reductionist conception of expertise and its relationship with politics and policymaking. Te combined efect of these interpretative blind spots forces us into an epistemological trap that limits the heuristic relevance of the analytical stance.

It would thus seem that there may be no viable middle way between labelling RKCs derogatively or supporting them, but this is, perhaps, not the task of this book. We have, at the very least however, tried to outline a way out which—we realise—requires further collective efort if it is to be better defned and translated into precise research currents also capable of ofering critical science, technology and innovation governance insights.

#### **References**


**Open Access** Tis chapter is licensed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/ by/4.0/), which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence and indicate if changes were made.

Te images or other third party material in this chapter are included in the chapter's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the chapter's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder.

# **Index1**

**A**

Academic elites, 267–269, 272 Acidosis, 153 Acidosis of tissues, 150 Actant, 66 Actionable knowledge, 180 Activist, 119 Actor-networks, 55, 56 Actor–Network Teory (ANT), 8, 34, 35, 37–40, 112, 145 Agenda-cutting, 228, 234–237, 234n5, 239, 240, 247, 248 Agenda-setting, 234 Agnostic perspective, 277 Agnostic stance, 6 Alkaline food, 150 Alkaline Water (AW), 11, 140 Alkaline Water RKCs, 36, 38, 179

Alkalisation practices, 179 Alternative and/or complementary medicines, 101 Alternative epistemologies, 227 Alternative knowledge, 2, 24 Alternative sources of truth, 188 Anti-ageing, 153 Anti-science, 61, 78 Anti-scientifc attitude, 69 Anti-scientifc stances, 80 Archetypal story, 86 Arenas, 35, 36, 40, 143 Assemblage of claims and actors, 141 Authentic method, 73 Authentic science, 71 Authentic scientifc spirit, 71 Authority of science, 173 Awakening, 57–59, 62

<sup>1</sup>Note: Page numbers followed by 'n' refer to notes.

<sup>©</sup> Te Author(s) 2024

F. Neresini et al. (eds.), *Manufacturing Refused Knowledge in the Age of Epistemic Pluralism*, https://doi.org/10.1007/978-981-99-7188-6

**B**

Beliefs, 86 Betweenness centrality, 147 Big Pharma, 182 Bioethics committees, 186 Biographical trajectories, 290 Biological conficts, 156 Biological laws, 156 Biomedical elites, 185 Biomedical evidence, 175 Biomedical industries, 171 Biomedical jurisdiction, 174 Biomedical knowledge, 170, 172 Biomedical organisations, 173 Biomedical standards, 176 Biomedicine, 169, 170 Biotech conglomerates, 183 Blame/blaming, 248, 250, 251 Blaming frame, 244 Blaming narrative, 250 Boundaries, 46, 228 of knowledge, 139 objects, 143, 200, 207–212, 214, 215, 219 of science, 169 work, 41, 62, 76, 77, 79, 125, 227, 259 Bricolage processes, 166 Brokers, 212–215, 217, 219, 220

#### **C**

Canon, 124 Catalysts of scientifc dissent, 120, 127 Charismatic claim-makers, 66 Charismatic fgures, 101 Chemotherapy, 171

Children, 162 Claim–actor linkages, 145 Claim-makers/claim-making, 170, 171 Claim-making process, 171 Claims of knowledge, 142 Clinical trials, 176 Clustering, 146 Common knowledge, 22 Communities based on refused knowledge, 10 Community detection, 146 Complementary, 227 Complementary and alternative medicine (CAM), 23 Confict of interest, 116 Conspiracism, 33, 124 Conspiracy theories, 69, 113, 127, 294 Conspiracy theorist, 45, 294 Contentious dynamics, 170 Contentious relationship, 170 Controversies, 30, 32, 41, 239 Core RK claims, 163 Corporate biomedical elites, 187 Corpus of knowledge, 140 Counter-enrolment, 142 Counter-knowledge, 24 Coverage, 225–229, 231, 233–240, 245, 247, 248, 250 Covid-19 counter-narratives, 156 COVID-19 pandemic, 2, 140, 173, 292, 295 Crime news framework, 244 Criticism of institutional medicine, 160 Cultural foundations, 86

#### **D**

Debunking, 245, 246 Denial of Covid-19 pandemic, 160 Deplatformisation, 126, 129 Deviance, 248 Deviance frame, 242, 243 Digital ethnography, 12 Digital platforms, 4 Diminution, 234n5 Direct empiricism, 182, 189 Discoursivisation practices, 110 Discrediting/discredited, 235, 241, 246, 247, 250, 251 Discursive assemblage, 140 Discursive practices, 13, 111 Discursive production, 110 Discursive production practice, 110 Discursive spaces, 141 Discursive universes, 140 Diseases, 147

#### **E**

Ecological approach, 110 Ecology, 111 Education, 67 Te elderly, 162 Electro-hyper-sensitive, 58 Electro-hyper-sensitivity (EHS), 58, 65 Electromagnetic pollution, 184 Electromagnetic waves, 171 Elitist, 101 Eminence-based medicine, 186 Enrolled actors, 144 Epistemic agnosticism, 259 Epistemic arrangements, 169 Epistemic battles, 279

Epistemic certifers, 259, 266, 273–276, 278, 279 Epistemic conventions, 174 Epistemic enrolment, 141–143 Epistemic enrolment space, 142 Epistemic experts, 170 Epistemic institution, 286 Epistemic neutrality, 55 Epistemic positioning, 139 Epistemic stances, 169, 181 European Medicines Agency, 185 Evidence-based medicine, 172 Evidential culture, 183 Experience-based facts, 189 Experience-based research, 185, 186, 189 Experiential expertise, 44, 174, 178, 180, 187 Experiential experts, 16 Experiential knowledge, 44, 227, 295 Experiential practices, 181 Experiential research, 181 Experiential truth, 189 Experts/expertise, 28, 43–45, 85, 172, 195, 196, 200, 201, 204, 205, 207–215, 217–220, 295 Expert task forces, 186 Expression knowledge based on experience, 46

#### **F**

Fake news-making processes, 5 False prophets, 87 Family, 65–68 Fear and psycho-social conficts, 154 Fifth-generation (5G), 11, 113

Five Biological Laws (5BLs), 11, 42, 93, 140 5 Biological Laws RKC (5BL RKC), 36–38 5BLs community, 99 Founding fathers, 13, 104 Founding stories, 87 Frame/framed/framing, 226, 228, 233, 238, 241, 242, 244, 248–250 Frameworks, 233

#### **G**

Gatekeepers of truth, 3, 170 German New Medicine (GNM), 94 Global biotech corporations, 174 Governance, 172 Governmental bodies, 170

#### **H**

Hamer, R. G., 95 Healthcare, 160 despotism, 160 practice, 170 professionals, 171 systems, 169, 186 Health ministers, 182 Health policies, 151 Health professionals, 170 Health technologies, 176 Heroes, 104 Heterogeneous actors, 140 Hierophany, 94 Holistic principles, 180 Human organism, 176

**I**

Immune system, 180 Implicated actors, 142 Impostors, 196, 197, 199, 200, 207–215, 217, 219, 220, 259, 266–273, 278, 279 Independent scientists, 189 Infodemics, 4 Institutional expertise, 190 Institutionalisation, 232, 234, 235, 247 Interconnected discursive ecosystem (IDE), 113 Ironic take, 245 Irony, 246, 250, 251 Issue-diminution, 234, 248 Issue-omission, 234, 237, 248 Issue-removal, 234, 237, 240, 248 Italian Medical Association, 185 Italian newspapers, 15

**K** Knowing niche, 286 Knowledge authorities, 124 Knowledge refused, 35

#### **L**

Lay knowledge, 22, 23, 28 Legitimacy of the scientifc institutions, 226 Legitimisation, 226 Legitimisation strategies, 41–46 Life sciences, 170 Life scientists, 170 Lifestyle, 151 Longitudinal analysis, 15, 248

#### **M**

Mandatory vaccine policies, 184 Martyrs, 86 Media, 227 ecology, 111 narratives, 15, 227 territories, 122, 129, 132 terrorism, 156 Medialisation, 226, 247, 250 Media/news/narrative ecosystems, 111 Media-related practices, 114 Medical agencies, 170 Medical experts, 174 Medical practitioners, 171 Medical regulatory agencies, 182 Medicine betrayed, 164 Mimesis, 46 Mimicry, 45, 259 Mimicry practices, 145 Miraculous artefact, 93 Modularity, 146 Montagnier, Luc, 42 Moral careers, 56, 76–81 Myth, 86 Mythic science, 86, 89 Mythical narratives, 86

#### **N**

Narrative approach, 140 Narrative ecosystems, 112 Narratives repertoires, 139–166 Narrative structures, 142 Narrative trope, 88 National health institutes, 182 National medical associations, 182 Networks of enrolment, 142

Nonhuman actants, 110 Non-human actors, 142 Non-humans, 27, 29, 30, 35–38, 40, 42, 196, 199, 212, 214, 219 Nosographic research, 176 Nosological classes, 172, 190

#### **O**

Objectivity, 186 Omission, 228, 234n5 Online spaces, 143 Ordinary people, 173 Organs, tissues and cells, 147

#### **P**

Pandemic, 24, 35, 38, 40, 41 Pandemic arena, 196–200, 215, 219 Pandemic objects, 196, 199–208, 210, 212–215, 217–220 Para-scientifc, 71–74, 76, 80, 81 Peer-to-peer experimentation, 180 Personal experiences, 22, 23, 43, 44 Personal health management, 174 Physicians, 162 Polarisation mechanism, 288 Policies, 171 Policymaking, 296 Political arrangements, 169 Political decision-makers, 182 Political elites, 174 Political engagement, 175 Political legitimacy, 231, 247 Political legitimation, 227, 247 Politics of life, 170–172 Polluting pathogens, 147 Popular epidemiology, 24

Populist, 86 Positionality, 12, 26, 37 Positioning, 34 Post-factual, 5 Post-normal science, 295 Post-truth, 22, 30, 32 Post-truth society, 5 Post-truth theories, 186 Power asymmetries, 189 Power dynamics, 289 Precautionary principle, 123 Principle of symmetry, 30 Private corporations, 186 Pro vaccine-choice RKC/pro Vax-Choice RKC, 36, 38 Professional arrangements, 169 Professional healthcare, 169, 171 Pro-vaccine choice, 11, 258–264, 267, 271–273 Pro-vaccine choice milieu, 180 Proxies of media, 250 Pseudoscience, 61, 78, 79 Psychological shock, 180 Psychomagic, 72 Psychosomatic dimension, 179 Public communication of science, 229, 230, 240 Public communication of science and technology, 229 Public controversy, 41 Public decision-makers, 186 Public discrediting, 233, 241, 248 Public health, 169 Public health policy, 296 Public sphere, 171, 173, 196, 199, 204, 214 Purifcation, 164

**Q** Qualitative feldwork, 257 Qualitative networks, 143

#### **R**

Re-assembling science, 163–166 Reciprocity, 12, 28, 29, 33–35, 37, 41 Refexivity, 258–265 Refused knowledge (RK), 10, 22, 26–33, 40, 41, 43, 45, 46, 139, 169, 170, 291 Refused knowledge communities (RKCs), 10, 22, 27, 31–38, 40–42, 44, 45, 47, 85, 139, 170 Refused knowledge followers, 169 Refused knowledge social worlds, 54, 55, 61, 62, 64, 69–71, 77 Relationality, 12, 27, 28, 32, 34, 37, 41 Relativism, 32 Religious/prophetic narratives, 86 Removal, 234n5 Repertoire, 146 Research practices, 174 Research scientists, 173 Re-working of conceptions and practices, 166 Ritual, 99 Ritual forms, 86 RKCs' entrepreneurs, 142

#### **S**

Sacrifce, 93 SARS-CoV-2 coronavirus, 151 Schism, 87 Science, 53–55, 59, 61, 62, 64, 69–71, 75–79, 81 Science and Technology Studies (STS), 8, 12 Science communication, 226, 232, 247 Science fction, 62 Science-related populism, 23, 174, 175 Scientifc and political populism, 130 Scientifc authority, 5, 145, 173 Scientifc biomedicine, 172, 177 Scientifc communities, 79–81, 171 Scientifc establishment, 98, 174 Scientifc ethos, 185 Scientifc expertise, 186 Scientifc illiteracy, 2 Scientifc institutions, 227 Scientifc knowledge, 54, 72, 77, 79–81, 290, 293, 296 Scientifc method, 71 Scientifc myths, 88, 89 Scientifc patchwork, 13 Scientifc patchwork storytelling, 111, 115–118 Scientifc scholars, 147 Scientifc truth, 103 Seamless web, 287 Situation, 110 Social media, 35, 111 Social network analysis (SNA), 14, 140 Social world framework (SWF), 8, 14, 34–37, 40, 110, 226, 232 Social world maps, 196 Social worlds, 22, 32, 34–36, 40, 44, 53, 55, 56, 60, 62, 77, 79, 86,

109, 139, 169, 170, 225, 228, 257–259, 277, 286 Sociology of associations, 141 Statistical inferences, 176 Stop Fifth Generation (Stop-5G), 11 Stop-5G RKC, 38, 42 Stories, 93 Strategies, 42, 43, 45 Structural holes, 213 SWF-ANT, 38 Symbiotic relationship, 226, 229, 247, 250 Symmetrical stance, 6 Symmetry, 26–34, 37, 41, 46 Symmetry postulate, 9 Symmetry principle, 259, 289 Symptoms, 162 Syncretic patchwork, 13 Syncretic patchwork storytelling, 111, 115, 129 Syncretism, 42–44, 46

#### **T**

Technical-scientifc authority, 3 Technocratic representation, 296 Technoscience, 285 Techno-scientifc expertise/technoscientifc experts, 2, 4, 286, 295 Terapeutic protocols, 176 Traditional knowledge, 23 Translation, 143 Translation between diferent repertoires, 165 Transmedia swarming storytelling, 129 Trust, 170

Truth, 170 Truth-claiming groups, 103 Tumours, 151 Two-mode networks, 145

**U** Uncertainty, 40, 46 Undone science, 24 Universes of discourse, 141 Unreliability of experts and institutions, 156

**V**

Vaccinations controversy, 279 Viruses, 162

**W**

Wakefeld, 42 Web-ethnography, 143 Wellbeing, 160 World Health Organisation (WHO), 185