3.1 Introduction

Endorsing and adhering to a body of refused knowledge is a significant 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 specific body of knowledge as ‘refused’. Thus, 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 significant personal turn. Rather than ascribed it is acquired through a biographical transition. The 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. This 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 scientific 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 scientific knowledge? These two questions address the same social knowledge stabilisation dynamics.

In this respect, whereas at first 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 benefitting from widespread recognition in contemporary societies. Such turns involve weighty choices that can be explained only in relation to particularly stringent (non-epistemic) mechanisms.

Thus, 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 scientific 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 scientific communities.

3.2 Turning as a Process

This 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). They function as actor-networks of heterogeneous socio-material resources and agents engaged in efforts to negotiate and resist prevailing scientific discourses and produce knowledge offering 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 different 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 affinity; triggered by an event that is not necessarily related to a specific actor-network, although it can become such when it is experienced and defined by the individual as a ‘problem’; supported by human micro-networks of strong ties generating affiliation—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 Theory, namely that actor-networks (in this case, communities) are assemblages in unstable equilibrium, fleeting 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 (Goffman, 1959) in which the affiliation to a micro social group activates one’s own ‘affinity’ to refused knowledge and enables individuals to ‘become willing’ to be part of the relevant social world (Matza, [1969] 2010, pp. 111–112). Those ‘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. This 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. The 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 fields conversion to a new system of beliefs is described by protagonists with an ‘awakening’ narrative (DeGloma, 2010; Harambam, 2020, pp. 134–137).

The 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 pro-vaccine choice supporter, hopes

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

This leverages a first 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 fields:

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. Therefore, 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 sufferers (Associazione Italiana Elettrosensibili, AIE), which is a striking case of biosolidarity (Bradley, 2021, pp. 543–546), Luigi added:

I find 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 Thomas DeGloma observed, awakening stories are often not personal experiences but cultural patterns adopted by individuals to make sense of their experiences. He claims that ‘different 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 fine, 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. […] Through anti-gymnastic 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. This gradual transition from compliance with science to adhesion to refused knowledge is a common feature of interviewees’ stories and confirms earlier research results (Rogers & Pilgrim, 1994). The following excerpt is paradigmatic. Franco is a hospital nurse and a 5BLs expert proactive in promoting this approach on the web. He told us:

The 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 find 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 fine, I was really fine. […] 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)

This narrative touches on several elements which show up very frequently in the personal stories of those embracing refused knowledge. They 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 find a quick and effective response to it. Otherwise, it would not be a problem. Those involved thus start taking note of those recommending alternative remedies—in this case, acupuncture. The 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. Thus, 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, scientific and anti-scientific approaches to problems. Amit Prasad (2022) recently suggested that investigating anti-science claims requires examining not only what these claims affirm 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-scientific 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 confirm this thesis, as they imply constant negotiation with science. Membership of a particular refused knowledge social world is not definitive and, neither, frequently, is it complete. The 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 different 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 definitions of the facts encompassed by a certain body of knowledge. Quite the opposite, many interviewees place very clear boundaries around the field 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. They have exposed themselves to several legitimate criticisms. I have heard people use arguments that are truly bordering on science fiction, 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. […] This 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-scientific theories (as shown by Harambam, 2020, pp. 182–187), but this is just a clear case of scientific ‘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 significant 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. They act as spokespersons of the new association (Latour, 1987, pp. 70–74). This is the case of Giovanni, an expert and trainer in the field of alkaline water, who himself turned to holistic medicine and salutogenesis (see Mittelmark et al., 2017) following a significant ‘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 finding a solution to her problem. So, my protocol is mainly about identifying the cause. Then I use investigation tools to figure out what’s wrong. Most of the time it all starts from the intestine. […] The 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 effective solution by means of a diet that includes drinking alkaline water, thereby enrolling the client in the respective social world.

This 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. The enrolment in the new association was facilitated by an interessement elicited by science itself, which therefore actively contributed to the transition to refused knowledge. This 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 effects. 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 flaw 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. That is, I am for medicine based on a person’s needs. I mean, a guideline is fine, a protocol is fine, but then the protocol must be applied specifically to that person, it must be contextualised to what we are doing. (Iacopo/AW)

Thirdly, medicine lacks empathy. Patients are not listened to and emotional support is not given. This accusation is levelled against medicine by many interviewees, but it is especially evident in the case of electro-hyper-sensitivity sufferers. This 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 effect: if you see an antenna and feel sick, it is because you are somaticising your fear of electromagnetic fields. This is the ‘tragedy’ experienced by electrosensitive people, as Luigi—the president of the Italian association of EHS sufferers (AIE)—emphasises: ‘By not recognising EHS, WHO effectively prevents national health systems from carrying out adequate diagnostic, prognostic and therapeutic processes. There is a segment of the population totally abandoned, which partially—in one way or another—joins us’ (Luigi/Stop 5G). The ‘state of abandonment’ in which health systems leave patients suffering from symptoms that they attribute to electromagnetic fields 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

Thus, it is no surprise that joining an RKC generates a magnetic field which reinforces individuals’ interest in, and adherence to, that body of refused knowledge. The 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. They 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 Thérèse 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 figure, Thérèse 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, ‘Thérèse 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 Thérèse would tell you to take a painkiller’ (Piera/5BL). As an actant, the figure of Thérèse exerted influence 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 influence 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 pro-vaccine 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 scientific illiteracy but, quite the contrary, because it correlates with a high educational level (McCright & Dunlap, 2011; Veldwijk et al., 2015; Yang et al., 2016). This is confirmed 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. The 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 qualification is not the only way of acquiring knowledge strong enough to support resistance against scientific 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. Thus, 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 specific information that is occasionally syncretistically derived from fragments of specialised training and otherwise from self-education and constant netsurfing.

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). This means that the internet works as a repository of news, discourses, arguments, symbols and everyday events that can be appropriated to interact in a specific 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 offline. A turn to refused knowledge mainly or exclusively based on media information is not a pattern. Obviously, the media system also offers 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, specific attitudes, even the reprocessing of experiences dating back to childhood or family relationships, as the following excerpt makes clear:

My mom had a difficult delivery. [...] So I was born with a broken collarbone, and my mother really suffered and was always telling me ‘They 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. [...] Then 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. The 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 specific interpretation of their ‘problem’. Such a framework is then activated in the turning process and applied, for example, to firms 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-scientific 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-scientific attitude, irrationalism, spiritualism and esoterism is equally inappropriate. The 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 effort 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 flight into the irrational, but by a profound dissatisfaction with the practice of scientific and medical research and the constraints imposed by the knowledge such research generates. The case of Davide, who is vaccine hesitant and rejects the official COVID-19 pandemic statistics, can be considered an adequate representative of the opinion of numerous interviewees.

Originally from Uruguay and father of two, Davide suffers 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 first 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. [...] That’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.

Therefore, Davide’s biographical turn is not a rejection of critical thinking but is based on a strengthened form of it. The 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 scientific method per se. This 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 findings and financial interests makes it difficult to consider scientists truly disinterested. According to the opponents of science, published scientific research is manipulated and those calling themselves scientists are traitors to the authentic scientific spirit. This attitude comes across in Davide’s words, attributing responsibility for medicine’s degeneration to the economic interests of pharmaceutical companies.

There 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 find an effective cure, it’s not even useful. (Davide/Pro VC)

3.6 The Role of a Para-Scientific Legitimisation of Knowledge

Briefly, refused knowledge social worlds refer to a widely shared model of knowledge which is basically rational and closely resembles scientific practices in its structure. It is consistent with, and leveraged by, the legitimisation strategy defined in Chap. 2 as mimicry, as it often deploys the same argumentative frameworks and scientific 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-scientific’ to avoid the prefix ‘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). The prefix ‘para’ emphasises an affinity with science, rather than the differences from it.

Discourses supporting or justifying the transition to refused knowledge by leveraging a para-scientific 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 fitted. 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’. This, 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 scientific 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-scientific 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 identified by scholars long ago as patients’ need to supplement the knowledge gained from scientific sources with their own biographical experiences (Comaroff & 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 reflective 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 efficacy. The strongest evidence for knowledge claims pertaining to health is obviously recovery from a disease. Thus, 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 effective (‘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)

This is perceived as evidence, as she then says, ‘I’m crazy, you know, but I also want the scientific thing’.

Within this narrative, the comparison with medicine is an essential step, as we have seen. People embrace a specific 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 definitive answers, envisages relapses and does not conceal the tentative nature of its treatment. Similarly, Piera emphasises that it works cleanly, while medicine has side effects, 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-scientific 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 field 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. The 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)

Then 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)

Thus, 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 scientific basis. Or, finally, 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)

Briefly, the set of practices on which the para-scientific 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 scientific 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.

The fact that the para-scientific 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 scientific approach is not merely a strategy with which to strengthen one’s epistemic authority and legitimise a professional field. These 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 Goffman (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 field of medicine and the human body, the impersonal approach cultivated and performed by doctors feels like cold indifference to people’s fate, an indifference which makes scientific 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. They 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 confines refused knowledge to the non-scientific 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 confines. The existence of a boundary implies the existence of a territory beyond it, an ‘other’ social world. But this holds true in both directions. Thus, 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. This 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 off 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. This power materialises in the construction of a clear and rigid border between conventional medicine and alternative forms of medicine, the latter being considered ineffective by the Council and, therefore, rejected. In our field of enquiry, this specific power of science emerges with great force in the case of the 5BLs, given that several former doctors have been struck off the Register for treating cancer patients according to the principles of New Germanic Medicine. Thus, 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 off, so it would be absurd, it wouldn’t make any sense. Therefore, 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. This is precisely why rejection by science facilitates the structuring of a moral career: it classifies and standardises what is inherently non-standard. 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 effect of classification is not solely a consequence of constraints exerted externally (for example, being struck off), but also of identity-building processes (Matza, [1969] 2010, pp. 165–180). Classification 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 definite and makes it conform to a specific pattern of action—such as embracing refused knowledge and joining an RKC. The turn to refused knowledge often originates from a ‘problem’ that finds a solution outside the canons of science. But this is just an event in life, a single experience, it still does not make definite sense. The mainstream typification 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

This 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 scientific community; and that it frequently reveals a progressive radicalisation trend towards bodies of knowledge that are increasingly alternative and less compatible with recognised scientific knowledge.

I then described several drivers of this turning process and focused on the triggering role often played by specific 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. This translation of health events or conditions into problems enables them to exert specific agency, shoring up the turn to refused knowledge. I also argued that turning processes of this kind are not normally driven by anti-scientific stances because they actually rely on a powerful faith in a simplified understanding of the scientific method based on a para-scientific 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.

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

Scientific 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, scientific 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 verification and also often accepting ideas and interpretations that conflict 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, scientific knowledge is not up to expectations because it is provisional and controversial by nature, which implies that scientists are used to conveying caveats regarding scientific findings. 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 scientific results vary (Ratcliff & 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, scientific knowledge is not up to expectations because it is conveyed through impersonal forms of communication rather than interpersonal relationships. This is true, firstly, in the field of scientific 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, scientific knowledge is not up to expectations to the extent that scientific institutions, which are the custodians of such knowledge, contribute to structuring the moral careers of the supporters of refused knowledge. There is a contradiction implicit in science’s role in stabilising socially useful knowledge: when it draws a boundary between what is scientific and what is not, it weakens the trustworthiness of knowledge classified as scientific in the eyes of those who consider knowledge classified as unscientific or pseudoscientific 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 scientific communities. Indeed, the reasons leading people to refused knowledge—insofar as they are not irrational motives but replicate the scientific posture simply by translating it into alternative, para-scientific practices and reasoning—constitute a very rich basis of data and food for thought with which to revisit our understanding of science.