In early 2015, I got in touch via email with Agrupación Libre Mente through Ramon, an ex-user and disability rights activist whom I had met in 2014, in the context of my involvement in the Quality Rights project where professionals and users evaluated mental health facilities across the country (Minoletti et al. 2015). He discussed my project with the other members and he replied that they were OK with me coming to their meetings. I arrived in Santiago by the end of July 2015 and 3 days later I attended the previously described seminar. I did not know Ramon was going to be there.
That day, during lunch, I approached him and Claudio, another member of ALM, and we talked for a while before other people circled them to ask them questions. It was Monday, the day ALM met, so they invited me. The meetings were held on the second floor of Librería Proyección, a busy anarchist bookstore located on the side of the colonial San Francisco church, in the heart of the capital.
Libre Mente was born in 2013. The group resulted from the transformation of a prior “auto-formación” [self-training] initiative led by psychologists and other young professionals. It was directly connected with the work of the Centro de Acción Crítica en Salud Mental [Center for Critical Action in Mental Health], an active group within the burgeoning “anti-psy” scene in the country. Antipsychiatry and “anti-psychology” have had a resurgence, particularly in academic psychology, through the work of Chilean philosopher Perez-Soto (2014) among others. This Marxist, anti-capitalist form of anti-psychiatry resonated with the values of a generation of students that participated in the waves of protest sweeping the country over the last decades (Cabalin 2012).
Ramon, an active member of the disability-rights scene in the country, was the first member of the group with “a direct experience of psychiatrisation” (his words). Although his aim was to shift the group towards a user and ex/user based initiative, for him, service-user exclusivity was pointless: the group saw itself as the outcome of solidarities across the user/non-user divide, as in other Latin American countries where mental health activism is diverse by definition (Freitas 2011). This is why initially the group called itself a “Movimiento de Personas por la Salud Mental” [A People’s Movement For Mental Health].
Through 2014 Ramon also formed the “Locos por Nuestros Derechos” [Mad for our Rights] collective, an advocacy initiative responsible for the Manual de Derechos Humanos en Salud Mental [Human Rights in Mental Health Handbook] (Locos por Nuestros Derechos 2015). He had already visited mental health services, universities and diverse community organisations across the country and internationally, disseminating El Manual and offering his critical views around forced and irreversible treatments, the medicalisation of children’s behaviour, the role of pharmaceuticals in influencing policy and the unacceptable complicity of professionals. Users, students and professionals generally wanted to know more and in response an open invitation was extended to ALM’s meetings.
The diffusion of El Manual prompted a circulation of participants into the meetings, mostly psychology, social work and occupational therapy students, journalists, social scientists, community organisers and activists interested in the group. During fieldwork the number of participants in a meeting fluctuated from 7 to 15. Amongst the permanent participants, there was a group who did not describe themselves as users, ex-users or survivors. Most of them worked in mental health or related fields, in different levels and locations, and some of them had a longstanding connection with LGBT activism, the student movement or animal rights advocacy. It was a diverse group in terms of age, gender and background, but they all had a wide knowledge of mental health policies, the power of the pharmaceutical industry and the damage that tradition mental health services could do.
There was also a permanent group of users with whom I engaged the most. I interviewed each of them during the 5 weeks of fieldwork. Renata and Pedro were living together for about a month. Ramon lived with his partner and worked independently in construction, while Pedro and Claudio had met in psychiatric facilities and together sold different products in central Santiago’s street markets. Alonso lived with his family and had a job through the intermediation of a local disability office. All of them were acquainted with other users through their paths across institutions and rehabilitation services, inviting them to the meetings.
Almost all of the users had experienced neglect, abuse and manipulation in the hands of psychiatrists and other professionals working in the mental health system. Some had quit all medication, particularly Ramon and Claudio. Alonso was working towards discontinuation, with the advice and support of the group. Yet others, like Renata, openly defended the informed use of psychopharmacological solutions. Among them Ramon had the most distinctively radical stance towards traditional mental health services, using his own life experience to publicly speak against psychiatric abuses. Not all of them shared his vision or intensity. While their stories overlapped, the group had no unified aims.
Each meeting was started by Ramon or other members briefly describing the last meeting’s agreements or issues that required follow-up. Then introductions came by new and old members, accompanied by lengthy conversations. The level of attention given to each participant, regardless of how long they had been participating always surprised me, since the moment I introduced myself. More importantly, the diversity of the meetings, with users, ex-users, non-users and uninitiated guests produced a highly deliberative space, where the definition of the group’s aims and identity emerged reflexively (Archer 2007), as an ongoing achievement rather than a starting point. Every meeting re-started the group.
But regardless of the changing composition of each meeting and the countless interesting topics and situations observed, there were three specific projects that demanded more time and energy and required the group to decide on a number of important issues. These projects forced the group to reflect upon its own identity, that is, on how it was perceived by a set of others, others made relevant by the projects. These three projects provide the ‘focus’ for the focused ethnography. These were the project for the creation of a coffee shop, the parallel creation of a new national mental health plan, and the planning of the first Mad Pride Parade in Chile. These projects, in turn, involved a process of engagement with the legal system, the mental health system and society as a whole.
The Legal System
There were 8 participants at my first meeting including other first-timers. Usually, each new participant was subjected to questions coming from all members. The group interrogated me, demanding more than a repetition of what Ramon had already told them, and I could immediately perceive the importance of testimony and position. The other first-timer was Alonso, a service-user, and he was interrogated about his diagnosis, pharmacological treatment, services being received, interaction with professionals, etc. These extended personal introductions created a sense of presence: we were not “just” there, to observe or learn, we were part of the meeting with stories and concerns potentially linking us together.
I offered my help with activities. At that point, their main project was the creation of their own coffee shop. Over the next 4 meetings this was the main topic of discussion and planning.
During the first two encounters, the conversation around the project was creative and playful. In the “imagined” coffee shop every idea made sense, from the most trivial business considerations to the ambitious desire to “rehumanise the normals” through the cafe [Renata, Woman, 45 y/o, User.]. In contrast to what they viewed as an alienated, individualistic and sad society, the group wanted to create a “café con-ciencia” [wordplay meaning “consciousness coffee” and “coffee with science”], where clients could change not only their opinions about madness but could also experience a sense of personal transformation, the sense of being in the difference.
As such, beside the relevant economic benefits, the project expressed a desire for a meaningful re-engagement with society, reversing stories of miscommunication and alienation: “This should be a space of expression, not only our expression but the expressions of those who come here (…) It gives us the possibility of listening to the other, in this case, the client, and this is similar to what happened with us and psychiatry because… you go to the doctor and you want to be heard and he says ‘ok, time’s up’ and that’s it” [Claudio, man, 55 y/o, ex-user].
Through their plans for the project the group rehearsed notions of shared decision making, horizontality, transparency and democracy. The shop was an imaginary space for them to play with their possibilities of existence as a group. But transforming the utopia into a real place required the adoption of a form. For the project to work, it had to be legally valid, and for this, the group itself needed a personalidad jurídica, a legal persona, acceptable by the legal system as a right-and-duty-bearing unit (Dewey 1926).
It was a big step, so the group sought some technical advice. A coffee-shop owner, an expert in cooperatives and a lawyer came to the meetings. Some members had already created a “corporation” that could be reactivated, a type of legal persona that allowed them to apply for funding, conduct research, run businesses, etc. Although comprehensive, the corporation required an inflexible set of internal functions and distinctions: between board and associates; president, secretary and treasurer; normal and extraordinary sessions, etc. Another legal persona, the “cooperative” seemed to better match the self-image of the group, with shared decision-making and equal distribution of work and income. But such form could only be used for very narrow purposes, preventing the pursuit of broader “social” goals and eliminating the possibility of receiving funding from external agents, such as the State, international agencies and NGOs.
“Once you make a decision about your aims, it will be easier for me to give advice on the best juridical personality” was one of the final remarks made by Hector, an impeccably dressed lawyer invited to the last coffee-shop related meeting. But the selection of a legal form was not a straightforward decision. The proposed project symbolised the group itself, it was an image of how they wanted to be seen, and a way to “come back” to society on their own terms. But to be viable it required a legal fiction, legible by the legal system, alien to the ongoing self-identification of the group. The group faced a paradox, a potentially endless oscillation between options (Perez and Teubner 2006): the only way to be what they wanted to be -a financially viable, user-run coffee shop- was to be something they rejected -a corporation with hierarchical roles and internal divisions.
For Teubner, “Real paradoxes are highly ambivalent. They contain destructive, paralysing potentials but contain at the same time productive, creative possibilities” (2006:48). During the last part of the meeting Claudio made this point:
So, how to say it, these meetings like the one we’re having right now, while not part of a formal legal figure, these meetings place us in a relation, they make us develop a relationship between each other, on another level.
The closer the group got to this dilemma of identification, the stronger the need to acknowledge its own relational reality as already there, regardless of legal identifications. As expressed by Cooper in her ethnography of mental health courts in the San Francisco Bay Area, USA, “The court’s formulation of jurisdiction and its creation of individuated subjects reach an impasse at the moment of the social” (2018:100). In the context of activism, the pre-existence of social bonds provides a foundation for the group to navigate the options of legal identification.
We will return to the fate of this project in the final section of these findings.
The Mental Health System
During my fifth meeting with the group, several professionals mentioned the ongoing elaboration of a new national mental health plan. The plan considered a process of country-wide consultation among every level of attention in the public mental health system, including civil society organisations. As an growingly active and visible group in the field, Libre Mente was expected to participate.
As I learned from the person in charge of this plan at a national level, the design of the consultation was very simple. The Mental Health Department of the Ministry of Health sent a draft version and each involved group or agent could discuss it collectively, adding new sections and feeding this back to the Department. Participation in the elaboration of the plan meant engaging in this feedback process, but there were no guarantees or rationale for how this information would be incorporated into the final plan.
Conversations about this consultation re-emerged in several meetings and in the context of different discussions in the group. The issue was originally raised by two professionals who had already participated in the consultation, and by Elisa, a user who was very active in her own Consejo de Desarrollo Local (2) where she learned about the plan. Ramon, on the other hand, had a different view:
“Personally I don’t want to participate in whatever the mental health department wants to do. I mean, because that plan is already decided. What underlies this exercise is the same old approach, four or five psychiatrists, who already monopolise all the decisions, make a deal. The only thing they want is money for more drugs and treatments, they disguise that with the discourse of rights and users’ participation… In the group making the real decisions there are no users, but they want to validate their plan so some users will share their views, and that’s why for example Eva who leads an organisation in Puente Alto, is inviting Elisa who lives on the other side of Santiago so that she can show up as one more user participating and validating the whole thing”.
Elisa was a middle-aged woman struggling with her own diagnosis and the sole provider of care for her disabled husband. She was an active member of a “Local Development CouncilFootnote 2”, the main mechanism of citizen participation available within her health service, and she had successfully brought herself to the attention of care providers, receiving urgently required treatment. El que no llora, no mama [“The crying baby gets the milk”] was her (and many others’) leitmotif, and the plan’s participatory process was an opportunity to cry and be heard. She confronted Ramon saying that she was the one interested in the process, and she had contacted other persons to look for possibilities of involvement.
But for Ramon there was a deeper concern: “Who created the first draft? Why them? Why are they supposed to know better? (…) they choose what we’re supposed to discuss, ‘discuss this and that’, what are the concerns, the problems, what are the gaps, etc. They choose the topics, the problems and the words. They choose who’s invited to give comments on the draft. They choose what to include from the feedback, they write the final plan and on top of that, they take the credit for being inclusive and participatory!”. In the words of Claudio: “The problem is that we are just reacting to what they are doing, we should work on the basis of our own work (…) because when we start to engage in a fight with the institution we forget about ourselves”. Rejecting the plan was a way for the group to confirm its own autonomy and value.
Increasingly, the conversation moved into the relation between ALM and the mental health system. For some, the flawed methodology and the dubious intentions of the Plan were precisely the reason why the group had to engage. “We should at least define what do we expect from the mental health system, what’s our ideal”, said one of the professionals. For him and others, the group needed ambitions beyond itself. In the metaphorical expression of Valeria [Woman, Psychologist, 30 y/o], while it was fine to raise the pins every time the ball knocked them down, eventually the whole game had to be transformed. The ultimate goal was to transform the mental health system, and not just to help each other to deal with their problems. Ramon responded to this and similar concerns:
Instead of thinking about ourselves working with the institutions, our plan is to empower ourselves, to define ourselves, to be an agent of change in ourselves, more than waiting in the system because the system is oriented to reproduce itself, and it only works for its own interests (…) So the change has to do with ourselves, how we build a citizen in ourselves, empowered, and we empower other people (…) That’s our mental health plan, that’s what we need to build. They care about facilities, budgets, drugs, professionals, that’s all. They call it ‘human rights’, they say ‘inclusion’ because they have to do it, but those are just names.
So instead of changing the game they could rather create and play their own game. For Claudio, “It’s good when we share stories about us helping others, our own reactions to injustice. To the extent to which we as a collective create forms of action based on dialogue and discussion, not like those arbitrary and abstract plans that come from the outside. The advantage in that you start from your reality, not from suppositions about what we, I mean, they need.”
The invitation from the mental health system created an opportunity to paradoxically take distance from that system. By seeing the mental health system as a blind, self-reproducing machine and its participatory plan as arbitrary and “exterior”, the group reflexively recognised its own exteriority in relation to the system. The “either/or” hesitation between participating or not led to the realisation of their own existence beyond (or outside of) the options, beyond participation.
The plan and the process of consultation required a sequence of activities and a certain temporality (Renedo and Marston 2015), guiding the actions of the mental health system during a predefined set of years, in line with WHO’s and PAHO’s health plans for the region (Caldas de Almeida 2005; Minoletti, Sepúlveda, and Horvitz-Lennon 2012). If policy plans encode visions of the possible and the desirable (Abram and Weszkalnys 2011), then what was rejected was also the temporal determination of the possible and desirable for the group. The plan became observable as a technocratic chronology in relation to which they could embrace “their own plan” for self-transformation, their own notions of betterment and progress, their own distinction between past and future.
For Abram and Weszkalnys (2011) the power of plans relates to their ability to draw different publics into a sequence of actions. In our case, the National Mental Health Plan’s aim was also to guide the action of a whole series of agents constituting the system’s relevant environment. Rejecting the plan was also a way to avoid a place within that environment. This third process is clearly visible in the next section on the mad pride parade.
Gradually, a decision about the ‘legal personality’ for the coffee shop became difficult to make. As stated before, the problem was not so much about which legal form to take, but about the need to take one in order to be what the group wanted to be. On the other hand, with its dependency on opaque legal definitions and administrative procedures outside of the group’s scope of action, the project was naturally replaced by initiatives that actualised a sense of control, completion and progress. The main new activity was the organisation of the first Mad Pride Parade in the country, La Marcha del Orgullo Loco.Footnote 3
Some participants knew about international versions of the parade. Locally, the Parade for Sexual Diversity originally called the “Gay and Lesbian Pride Parade” mobilised tens of thousands of people every year since its origin in 1999 (MUMS Chile, n.d.). At the same time, recent waves of student mobilisation in the country widely deployed theatrical and carnivalesque resources as a tool to communicate demands of social transformation (del Campo 2016), providing a relevant symbolic background.
The parade’s planning and preparation required many activities and decisions. While Ramon led the process, different tasks were distributed across participants, and all decisions were discussed in the Monday meetings and other extraordinary sessions. The first decision concerned the dates and place. The parade involved blocking key avenues in central Santiago, and a request had to be submitted to the Municipal Authority.
The initial plan was to organise the parade as a counter-manifestation to the International Mental Health Day (10th of October), celebrated since 1992 and initiated by the World Federation for Mental Health to rise the publics’ attention towards mental health issues (Brody 2004). But while a counter-manifestation could enhance the visibility of the group and its claims, For Drago, a user and university student “(…) this manifestation should come from us, not from what they are doing (…) otherwise it would look like we are simply reacting to what they’re doing”. Finally the date was moved to November.
A fixed date and venue were required to start inviting as many people as possible. But who was going to be invited? The mental health system already had a recurrent “public” (Newman 2009) assembled around the perennial call for financial resources (Montenegro and Cornish 2017), a call linking global and national agents from the PAHO, INGOs, local NGOs, Family Organisations, and many others. The group rejected this call, considering itself outside of the instrumental version of the public sphere created by the mental health system. Who was represented in the parade then? Only ALM?
Concretely, the initial concern was about who had to be rejected. Political campaigners could use the parade for self-promotion. They had to be excluded or required to refrain from using banners or other messages. But other groups were harder to distinguish, especially NGOs and established family organisations. Ramon suggested that all participants should sign up to a document, adhering to certain principles. The group discarded this impractical. Others suggested installing a “press point” where journalists, where people from the media and/or any curious people could ask questions and receive agreed-upon information, reducing the risk of both misrepresentation and misinterpretation. Connected with this idea, Julia [Woman, caregiver, activist, 38] suggested a manifesto with the group principles, “a text that defines who we are and what we want, and well if you disagree you better stay at home”.
Questions about how to present themselves came back to the conversation. But while past hesitations reflexively produced a sense of distance, the nature of the parade required intense engagement and exposure. Not all the interests could be controlled in advance, especially as they unfolded in space, with the multiplicity and simultaneity of voices and orientations that this implies (Massey 1999). Furthermore, the parade had the power to irreversibly situate ALM in front of other users, professionals, NGOs, the media and society at large. The stakes were high and I could feel how a relentless preoccupation with integrity and autonomy met an equally relentless drive towards the outside, towards the streets, towards the other. How could the group navigate this tension?
Right from the beginning, planning the parade was followed by a secondary, less practical reflection about madness itself. Faced with the question of self-presentation, that reflection became central. Are we mad? Are we proud of it? Is this the word we want to use? Is it actually offensive? For a user in another organisation, celebrating “madness” was like giving up the battle against prejudice, like saying “ok, you won, you can call us whatever you want” [Esteban., 27, user]. Even in Libre Mente the issue was not settled. For some the point was to re-signify madness, focusing on the other meanings of loco: Radically original, extraordinary, unpredictable, out of this world, etc.
But Julia’s position pointed to another function for the word: “The thing about ‘mad’ has to do with who calls you like that. It is one thing when others call you mad, and a different thing if you do it yourself and you do it with pride”. As such, beyond semantics, the word delineates a community for the first time, the community of those who are not ashamed of calling themselves mad. This was not the “population suffering from a mental health condition” or the “group of people living with a psychiatric disability”. Not even the “representatives from service-user organisations” summoned by a contingent policy requirement.
“Mad” is the word that the mental health field rejects as an expression of ignorance and prejudice. To a certain extent the field itself is founded on this rejection, including groups generally conflated with users, such as family members and caregivers. “Your son is not mad, he has a mental illness and there is a treatment” is the statement that constitutes them as caregivers, dispelling any doubt and setting a course for their lives (Montenegro and Cornish 2015). They, as Claudio and Renata expressed, felt clearly insulted by the name of the parade. But, precisely because of this, embracing “madness” had the potential to create the kind of alliances and solidarities they wanted to create, to project and protect their difference in the ecology of interests populating the parade, to create a separation, a sphere of validity and expression, incommensurable to the field.