‘Are You a Radical Now?’ Reflecting on the Situation of Social Research(ers) in the Context of Service-User Activism in Mental Health

Activism and the Chilean Mental Health Field

While the autonomous organisation of mental health service users and survivor groups is a stable feature in different countries of the Global North, in Latin America this is a recent and under-researched phenomenon. Available studies and policy documents usually place the actions and concerns of users alongside those of professionals, caregivers and other allies, under a common horizon of advocacy, usually oriented towards the expansion of mental health services (Ceriani, Obiols, & Stolkiner, 2010; Zaldúa et al., 2012). However, over recent years, an intense politics of dealignment is taking place: between users and families, between users and advocators, and between different user groups with opposing political orientations (Montenegro, 2018).

The first expressions of service-user collective organisation in Chile started in the late 90s with the creation of the National Association of Users of Mental Health Services (ANUSSAM). ANUSSAM was the outcome of the efforts of users working in high profile family organisations, born in the context of deinstitutionalisation (Montenegro & Cornish, 2017). For this process to consolidate the definition of mechanisms to legitimise coercive measures in the community was indispensable. The ‘Commission for the Protection of the Rights of Persons with Mental Illnesses’ was thus born, requiring the representation of a service-user organisation alongside other professional groups (MINSAL, 2000). The match between this legal demand and the prior organising efforts of users within family organisations gave birth to ANUSSAM (Montenegro & Cornish, 2017).

Since its inception in 2001, ANUSSAM has been the main user-led advocacy organisation in the country. Its role is to represent users vis-a-vis different government agents, including the Ministry of Health and the National Disability Service. However, over recent years alternative expressions of activism have emerged at the margins, under the influence of two relatively distinct processes. On the one hand, the disability rights movement has seen a growth in support over the last few decades, particularly after different Latin American states signed the Convention for the Rights of Persons with Disabilities (CRPD) (Angel-Cabo, 2015; Figueroa, 2017b). Several efforts have been made to harmonise national legal frameworks and the Convention, with a parallel articulation of advocacy actions across the country. In Latin America mental health issues are usually framed as psychosocial disabilities and, through this lens, the vocabulary and political horizon of the CRPD have penetrated debates about mental health services and the right of self-determination, self-expression and the autonomy of users (Figueroa, 2017a; Minoletti et al., 2015; Observatorio de Derechos Humanos de las Personas con Disacapacidad Mental, 2014).

On the other hand, a burgeoning ‘anti-psy’ scene has emerged in the country, particularly within academic psychology, partly influenced by the work of Chilean philosopher Carlos Pérez-Soto (2012) and the critical community psychology of Domingo Asún and others (Domínguez, Kornblit, Rovira, & Asún, 2002). Their work has mobilised a sense of exasperation with the role of psychological knowledge and techniques in the production of ‘neoliberal subjects’ adapted to post-dictatorship Chile, in the school and at work (Pavón-Cuéllar, 2017). Simultaneously, these ideas have resonated with the political values of a generation of students who participated in the waves of protest sweeping the country over the last few decades (Cabalin, 2012).

Both scenes help to explain the political and organisational style of Agrupación Libre-Mente and its view of institutions and professionals, aspects that are developed in subsequent sections. Prior to this, key elements in the literature on service-user activism are discussed, in order to situate the study.

Tensions Between Academia and Activism

The relationship between academia and activism has been debated since the origins of the social sciences. Whilst, for Marx and Engels’, dialectical materialism was simultaneously a science of society and a tool of its transformation (Engels, 2012; Marx, 1990), Weber (2008) claimed that science and politics responded to different and irreducible calls linked to differentiated spheres of action in modernity. Recent calls for activist scholarship have questioned these boundaries (Maxey, 1999) through integrative epistemological and methodological frameworks (Croteau, Hoynes, & Ryan, 2005; Hale, 2008; Smith, 1990).

Activism itself is a very wide concept that includes different goals, strategies and scales. While in many cases a shared vision of social transformation allows for the integration and hybridization of academic and activist orientations, in other cases knowledge and expertise themselves are key objects of contention, such as in the mental health service-user and survivor movement (Coleman, 2008; Everett, 2000).

User-produced knowledge and 'lived-experience' (Rose, 2008b) are key aspects of the autonomous service-user activism developed in different English-speaking countries over several decades (Campbell, 1996; Crossley, 2006; Hughes, 2006). For Faulkner (2010), engaging in knowledge production ‘has the potential to empower people, in that it gives us the opportunity to, as it were, reverse the “research gaze” and to use research for our own purposes’ (p. 37). While overlapping with the so-called ‘era of the patient’ in medicine (Reiser, 1993), in the context of psychiatry lived-experience, not only enriches a clinical approach but it becomes a fundamental ground to dispute the authority of psychiatric knowledge and the very notion of ‘the patient’ (Lester & Tritter, 2005; Noorani, 2013).

The specific perspective that service-users bring to matters of shared concern is based on their direct experiences of use - and abuse - at the hands of service providers and broader institutional frameworks. The centrality of lived-experience complicates the simple crossing of activist and academic boundaries. This has prompted the creation of hybrid platforms such as Mad Studies, defined as ‘a project of inquiry, knowledge production, and political action devoted to the critique and transcendence of psy-centred ways of thinking, behaving, relating, and being’ (Menzies, LeFrançois, & Reaume, 2013, p. 13). Taking distance from anti-psychiatry and other academic polemics, Mad Studies ‘takes as its principal source, inspiration, and raison d’être the subjectivities, embodiments, words, experiences, and aspirations of those among us whose lives have collided with the powers of institutional psychiatry’ (Ibis).

Although Mad Studies exemplifies a way of understanding the relationship between political and academic commitments in the field, it is still a very localised enterprise mostly situated in English-speaking countries. Moreover, the relationship between ‘experience’ and expertise has been debated (McKevitt, 2013; Meriluoto, 2018). Experience is a heterogeneous category whose form and validity are associated with other markers such as class and gender (Kelly, 2017). The position from which an experience is conveyed is not unitary, receiving modulation by the practical situations taking place to an individual or a group (Jones & Kelly, 2015). As stated by Schrader et al. (2013), the ‘mad’ identity that some of these movements claim is not an intrinsic, defining feature but an ‘active and thoughtful positioning of the self with respect to dynamic social narratives regarding mental difference and diversity’ (p. 62).

Across the Global South, experiences of service-user activism are emerging, responding to local concerns, drawing on different forms of solidarity and developing unique trajectories of self-differentiation that reconfigure the links between experience and membership. What is the situation of social research(ers) in these processes? How do these groups deal with the concrete presence and the interests of academics? What does this say about the way the relationship between activism and academia has been conceptualised in western countries?

Rather than a systematic answer to these questions, in this paper, I reflect on my academically oriented engagement with a group of service-user and non-user activists in Chile. Considering my experience and the interactions between other researchers and the group I aim to unravel some of the concrete ways in which the boundaries between activism and social research are negotiated in this specific field. Deeply testimonial in nature, the findings are modelled around the ‘reflexive vignette’ (Langer, 2016), a methodological and analytical tool for the retrospective reconstruction of the experiences of researchers in the field. This tool is described in the next section.

The Function of Reflexivity and the Research Vignette

Although reflexivity has long been part of the toolbox of qualitative social research, recently there have been attempts to problematise its scope. Especially in health, the notion has been formalised as a way to reduce bias and recognise the influence of the researcher in the field, a version that Kuehner et al. (2016) describe as ‘weak reflexivity’. In contrary, as stated by Hervik (1994) reflexivity is not an ‘internal’ feature of the researcher but forms part of the “intersubjective context of fieldwork’ (p. 60).

According to Hammersley and Atkinson (2007), during fieldwork, the researcher ‘will be channelled in line with existing networks of friendship and enmity, territory and equivalent “boundaries” (p. 59). This is relevant in the context of emergent activisms, where political affinities are in the making and the roles of academia and ‘research’ are disputed. A careful consideration of the dynamics of encounter, insiderness, and outsiderness experienced researchers are, therefore, not a supplement to the description of practices (Labaree, 2002) but rather a window into the boundaries defining activist spaces (Casas-Cortés, Osterweil, & Powell, 2008; Lichterman, 2017).

Langer’s (2016) ‘Research Vignette’ is an attempt to operationalise this stronger form of reflexivity. In its most basic form, the vignette is the description of specific episodes experienced while conducting research. It is grounded in an understanding of interviews and other methods as instances of situated and shared construction of meaning, exposing the experience of the researcher as the basis for a more accurate description of the field.

This retrospective analysis is not developed from a fixed position. For Langer (2016), ‘reflexivity does not refer to a solid researcher-subject but has to take into account that this particular subject is constituted performatively in the interview interaction with the interviewee’ (p. 745) or, as in my case, in the process of participant observation and the complex interactions it entails. The unsettledness of the research-position becomes a source of information about the field. For Devereux, whose work directly inspires this call for stronger reflexivity, a primary source of data for the social scientist is ‘the behavior of the observer: His anxieties, his defensive maneuvers, his research strategies, his ‘decisions’ (= his attribution of meaning to his observations)’ (Devereux, 1967, p. XIX). Following this, the following vignettes want to allow the reader to understand

In each vignette I highlight (i) the ways in which me and other members participating ‘in the name of research’ (Clough, 2004) were received by a very diverse group, (ii) the issues they brought to bear on their interrogation of the researcher’s position, (iii) the way in which I sought to respond and (iv) the outcome of this particular interaction in the context of my evolving relationship with the group. But in order to understand the context of these situations, I will first describe how I approached the group and what were its characteristics during the time I spent with them.

First Contact

Between July and September of 2015, and in the context of a larger project about the emergent forms of collective action by service-users in Chile, I conducted participant observation with a group named Agrupación Libre Mente (ALM). I knew them through their Facebook page where they shared different activities.

I first contacted ALM through Ramon, an ex-user and disability rights activist whom I had met a year before in the context of my participation in a study evaluating the quality of care and the respect of the human rights of users. I explained my research project to him and, after consulting with the group, they allowed me to attend their meetings. I flew back to Santiago at the end of July 2015 and three days later I participated in my first meeting.

I participated in 17 meetings with the group including nine regular weekly meetings, two extraordinary meetings (focused on specific projects) and six other events and activities involving specific members of the group. This amounted to 70 hours. I interviewed five of its members (service-users). Through field notes I recorded conversations and other aspects of the meetings, focusing on how the group described itself. In parallel, I followed the groups’ social media activity, before and after fieldwork.

The Group

ALM was the result of a transformation of a prior group composed of psychologists and other professionals engaged in the growing ‘anti-psy’ scene in the country (Montenegro, 2018). Ramon was the first member with a direct experience with psychiatry. He wanted to transform the group into a user-led and user-oriented initiative, but ALM was open to anyone interested.

The number of participants in ALM’s meetings fluctuated between 7 and 15. Participants who did not describe themselves as users or ex-users worked in mental health or related fields, in different levels and locations, and some were involved in other forms of activism. In terms of age, gender and background, the group was very diverse.

Those who described themselves as users and ex-users in the group shared stories of neglect, abuse and manipulation by mental health professionals. All of them were working to regain control over their lives. Still, their perspectives on psychiatry were diverse, with no set of agreed-upon principles. Above any other goal, they wanted to work together.

In one of our first conversations, Ramon emphasised how the meetings provided a space of authentic encounter that transcended clinical definitions, and how that was the foundation for empowerment and collective agency. Several months after concluding my fieldwork, and while walking together in London for a meeting with local activists, he expressed concerns about the sudden increase of researchers and other ‘non-users’ in ALM’s meetings. Long-term user-members felt increasingly alienated and wanted their own, exclusive space. My engagement with the group broadly coincided with this growing concern, a process that the following vignettes aim to reveal.

Vignette 1: ‘We Only Accept Participants, not Observers’

During fieldwork, ALM met every Monday at an anarchist bookstore in central Santiago. The meetings lasted around 2 hours. While there was no predefined structure, they started with a round of lengthy introductions that provided themes for further conversation. Whether old or new, each participant received the same level of attention. The composition of the meetings, involving users, ex-users, non-users and guests, produced lively conversations (Montenegro, 2018).

Two psychology students came to one of the meetings to conduct research on the group. A social psychology assignment required them to investigate an ‘active minority’ and, they thought, ALM was a perfect example. Ramon explained that the group needed to decide upon their participation. The students kept asking ‘research’ questions and Ramon, finally, advised them to submit those questions via email because ‘the meeting had a different purpose’.

After the interruption the conversation moved to the organisation of the Mad Pride Parade, the first such event in the country, organised by ALM. A discussion ensued about using the word ‘mad’. Some members felt that this could be offensive and alienating for other service users. The conversation revealed deep differences of opinion on fundamental matters, drawing the attention of the students.

The students‘ questions and concerns contrasted with the flow of the conversation. Other participants began to talk simultaneously - something that rarely happened. The students directed their questions to the members they thought were most fit to respond: Raúl, a psychologist and ally, and Ramon. They wanted to define the group through its aims, tracing the group back to a shared position on different issues.

However, as the quote reveals, the group resisted. The conversation moved back to the parade and the risk of appropriation of service-users voices, considering that the event was open to everybody and that the aim was to gather people and support. The students wanted to be there, to which Claudio, a user, responded, partly joking: ‘but in the Parade, we only accept participants, not observers’.

I could understand and somehow share annoyance of the group faced with these untimely observers. Their approach lacked skill and sensitivity, there was no attempt to participate and it felt like an empty attempt to get their homework done. But I could also see the similarities between my situation and theirs. In what sense was I different?

After a while, Mariela, a professional, asked the students if they were only interested in the group because of their assignment or if they had a personal connection with mental health. In response, they highlighted how ‘critical’ their academic training was. Mariela replied ‘in any case, you should be involved with the group beyond that assignment of yours… that could actually make you better psychologists’.

This episode revealed the discontinuity between the questions and requirements of these observers and the way the group understood itself. Being ‘critical’ - within the confines of psychology - was not enough. While not a precondition for participating in the meetings, a ‘personal connection’, emerged as a relevant boundary, a way to differentiate ‘observers’ from ‘participants’. While I was not directly implicated in the situation, and while I had a relatively secure position collaborating with the coffee shop project, the episode revealed the fragile situation of those participating ‘in the name of research’ (Clough, 2004), anticipating some of the issues that I faced afterwards.

Vignette 2: ‘An Exception to the Rule’

In the meetings, professionals were usually dealt with through the function they accomplished for the group. Earlier on, somebody brought a formally dressed lawyer to advise the group around the legalities of the coffee shop. Several attempts to incite a more ‘human’ side to him failed, including jokes about the need to upgrade the dress code for the meetings. A personal connection was not required in this case: he knew things the group did not, things the group needed to know and, on that basis, he had a place in the meeting,

It was different for psychologists and other mental health professionals. Their lack of a direct experience with psychiatry meant that they needed to legitimize their position. In several occasions a self-critical stance emerged as a mechanism of legitimation, but there was diversity in this. Some expressed a desire to learn about real people in order to overcome the limitations of academic psychology. Others denounced the psy-disciplines as aides of neoliberalism and framed their own role as collaborating with the ‘revolution of the mad’. But through diplomatic or critical distance, a professional background was still useful to position themselves within the group.

A new participant came to a meeting, and the group had a very specific reaction, one that involved me directly. She was around 30 years old and, although she had suffered a mental breakdown at an early age, she did not consider herself a service-user. She had studied sociology but never saw herself as one. At the moment, she was exploring the healing powers of plants. Most of the members shared a clear disdain for medicine. The idea of finding cures for personal ailments without relying on what they called ‘pharmafia’ produced an intense conversation.

Renata, a user and former biology professor, who usually insisted on her love for science, asked her if she had ever worked as a sociologist. Constanza replied:

In the first episode I remained an observer, but here I was implicated, not only by Claudio but indirectly by Constanza and her explicit disdain for the professional identity that I had espoused from the beginning. Her attitude was explicitly endorsed by Ramon, and it was common amongst the professionals in the group. An anti-professional stance and a general rejection of the role of ‘experts’ lined itself very well with the ‘anti-psy’ spirit of the group.

After this episode, something became clear to me. The group saw me as an exception to the vision of the sociologist as a distant bureaucrat. More importantly, I was the subject of the groups’ interpretations and expectations and, while obvious, that realisation shaped my ensuing interaction with them, adding to my prior interrogation: ‘What am I for this group at this point and how is that relevant for my project?’

In the first vignette, a ‘personal connection’ with madness and/or psychiatry emerged as a boundary, delimiting observers from participants. The second vignette shows how a disdain for professions allowed professionals to add legitimacy to their participation in the group. This complicated the production of boundaries by the group. Furthermore, the expectations some members had about me and the fact that, for them, I was not the ‘standard’ sociologist made me particularly aware of further expressions of disdain and/or support towards academia, as revealed by the following vignette.

Vignette 3: ‘Are You a Radical now?’

During the final period of fieldwork, I began to think about the end of my participation in the group. I had only four more meetings with them and I was planning to hold some kind of feedback exercise. Simultaneously my relationship with Jaime - a mental health professional and one of the founders of the initial group - was getting very tense. He never came to the meetings that I attended but we talked at different events and had some communication through social media (especially Facebook). Initially, he was supportive of my project but, as my fieldwork progressed, he seemed increasingly doubtful and hostile. In more or less explicit ways he let me know that I had no reason to participate in the group. My agreement and collaboration with Ramon and others did not convince him. I talked this over with Ramon, he dismissed Jaime's attitude but the tension continued and I feared that this could affect my relationship with the group and my fieldwork plan.

Although without explicit membership criteria, the group clearly privileged the presence of users. Non-users were welcomed, and, in several meetings, they were the majority, but permanent efforts were made to invite more users and to give those who were already part of the group more responsibilities and opportunities to lead different actions. This created specific dynamics of interaction and worth inside the group.

Besides Constanza, across the meetings, it was common to hear professionals and students expressing disdain towards professions and universities. They despised the training they had just received, taking pride in decidedly pursuing a completely different path in life. Universities were elitist, distant and ultimately useless.

However, the constant repetition of such views resembled a ritual of purification they needed to perform in order to feel at home. I immediately detected and reacted to this, on one level because it was interesting but, more importantly, due to a personal sensitivity towards everything anti-academic, given my own role in the group.

On the 5th of September, I went to the regular Monday meeting. I reminded the group that I was leaving by the end of the month, mentioning my intention to hold some sort of final session with them. I suggested two options. The first was to have a session centred around the social sciences, aimed at giving them resources to better engage with students and people conducting research. This seemed relevant, as Ramon had already mentioned the need to address the growing influx of students in the meetings. As an alternative, I proposed the idea of building flowcharts. Just as health services guide their interactions with users through flowcharts, users might also draw on their own experiences to build decision frameworks for dealing more effectively with service-providers. I hoped such a tool could assist them in visualising the widest possible range of responses in the face of arbitrary institutional decisions.

While explaining these options I felt that my textbook idea of a final feedback session was not appealing to most members. I had already talked with Ramon about concrete possibilities of collaboration from the UK, and my intentions to stay in touch with them were clear but it seemed like the group wanted something different. In one public Facebook interaction, Jaime had already told me that I was supposed to ‘bring money back from Europe’, that being my only role in the group and, at that precise moment I thought that maybe this expectation was shared.

Ramon broke the silence, saying: ‘Beside those options, it would be good to hear about what happened to you during this time’. I replied by discussing the impact of the group upon my broader research project and the way the meetings had become a lens to understand the limitations of the mental health system and the potential of users working together. Natalia, an anthropology student and ally, interrupted me, asking ‘Are you a radical now?’. It took me by surprise, and I asked her to explain the question. ‘I mean you surely don’t see things the way you did before?’ I replied that I had always experienced a deep dissatisfaction with the precarious and unequal public health system in the country and that my research was moved by a concern for the rights and experiences of users. She interrupted me again, saying ‘But I suppose that your ideas have changed a lot, haven’t they?’

Two parallel processes contextualise my position at that specific point during fieldwork. On the one hand, I was clearly enthusiastic about the group, its message and its value. I felt welcomed and confident, proposing ideas and taking part in debates and conversations. I wanted to help them in the terms they had set for me. But at the same time the episode with the students, the anti-professional attitude of the professionals and Jaime’s constant and unfounded doubts about me had made me more sensitive about the fragility of my role and defensive against those doubts.

Natalia was herself a social scientist, she had no direct experience of psychiatric treatment, was very vocal against professionals and was Jaime’s partner. Her demand for a proof of transformation and radicality inevitably felt like a deliberate attempt to demonstrate precisely the contrary, my lack of commitment and radicality. I could have said ‘yes, my ideas have changed deeply after this’, I could have drawn on my honest enthusiasm. But the question and its context precluded this option. I did not want to fit within the norms of (self) legitimacy defined by the professionals in the group.

Somehow, in that situation, my defensive side clashed with and prevailed over my enthusiasm and sense of connection. In response, I embraced more explicitly the identity of a sociologist. They all knew who I was and why I was there but still, being more sociologist was a way to respond to this dichotomous demand for commitment. A way to move out of the game of self-critique that professionals constantly played in the group.

This vignette shows that the anti-professional attitude discussed earlier was accompanied by more or less explicit expressions of doubt and disdain against newcomers who were not users. In an attempt to give themselves legitimacy as members, professionals created their own filters – or boundaries - for the group. Demands for demonstrations of commitment need to be situated within these dynamics, that are themselves linked to the composition of the group and the fact that it was still transitioning from being a student-led critical psychology effort to becoming a user-led advocacy platform.

That day, as usual, the conversation moved into other topics and activities. During the final part of the meeting, several members showed their interest in my proposal for a final feedback session. The attitudes towards my project were as diverse as the group itself and I could draw on the support of users to take my project forward, establishing a longstanding relationship with some of them. These vignettes are, in this sense, an attempt to throw some light into the contingent experience of conducting sociologically-oriented research with service-user activists and their allies.