Stories, visibility and operator principles of deinstitutionalization in mental health: narratives of the possible

Ana Carolina Simoni Simone Moschen About the authors

Abstract

This article describes specific professional experiences that helped construct deinstitutionalization processes seeking not only to end asylums but also discard their logic. For such, we chose to share narratives of this experience, based on what was experienced, facing the Benjaminean provocation that points to the precariousness of a discursive position, going against technicism and generalization while calling out to take responsibility. The daily narratives of this deinstitutionalization practice led us, on the one hand, to evidence the complicities between the legal-institutional and biopolitical models of power in the production of disposable lives, as pointed out by Giorgio Agamben, which are included in the legal order as an exception, if we take as reference what is seen as the norm. On the other hand, engaging in such narratives allows us to relive some effects of the experience itself, including conditions for returning to life in the community by people who have been institutionalized due to their likely disability or because of so-called dangerousness associated with mental illness. Thus, this manuscript serves as a testimony of collective activity that could establish a connection between the singular and the collective, whose raw material were reconstructed stories of asylums and neighborhoods, which we chose to name as “narratives of the possible.”

Palavras-chave:
Deinstitutionalization; Mental Health; Narratives

From the field where the experience came from

The object of this study are memories of a work path that built deinstitutionalization processes with psychiatric hospitals, custody hospitals and irregular nursing homes in various regions of the state of Rio Grande do Sul in the 2010s. It is inserted in a context of problematizations about the Brazilian psychiatric reform as an open and ongoing movement, in which deinstitutionalization is thought of as a task that aims not only at the end of the asylum, but also the asylum logic (Rotelli, 2001ROTELLI, F. A instituição inventada. In: ROTELLI, F.; LEONARDIS, O.; MAURI, D. (Org.). Desinstitucionalização. São Paulo: Hucitec, 2001. p. 89-100.; Rotelli; Amarante, 1992ROTELLI, F.; AMARANTE, P. Reforma Psiquiátrica na Itália e no Brasil: aspectos históricos e metodológicos. In: BEZERRA, B; AMARANTE, P. (Org.). Psiquiatria sem hospício: contribuições ao estudo da Reforma Psiquiátrica. Rio de Janeiro: Relume-Dumará, 1992. p. 41-55.), considering the effects of what Pelbart (1997PELBART, P. P. Manicômio mental: a outra face da clausura. In: LANCETTI, A. (Org.). Saúde loucura 2. São Paulo: Hucitec, 1997. p. 131-138.) called “mental asylums” and that, therefore, accompany us beyond the asylum walls.

In this direction, we start from the ethical and political commitment to sharing experiences, which do not propose to be models for the norm, but possibilities to deal with the diverse impasses involved in this intricate task of deinstitutionalization. Thus we decided to produce narratives of the lived as a methodological choice, following the horizon pointed out by Walter Benjamin (1994BENJAMIN, W. O narrador. In: BENJAMIN, W. Magia e técnica, arte e política: ensaios sobre literatura e história da cultura. São Paulo: Brasiliense, 1994. p. 197-221. (Obras escolhidas, v. I).) on the power of narrating in the production of transmissible experiences, which are increasingly scarce in contemporary times.

For the author, as the development of the technique brought the instrumental dimension of language to the foreground of life, whose corollary is information, the facts come to us accompanied by their explanations. Since “half of the narrative art is in avoiding explanations” (Benjamin, 1994BENJAMIN, W. O narrador. In: BENJAMIN, W. Magia e técnica, arte e política: ensaios sobre literatura e história da cultura. São Paulo: Brasiliense, 1994. p. 197-221. (Obras escolhidas, v. I)., p. 203), the proliferation of information, captured in the forms of opinion, would add to the strength of the narrative to pass on the experience.

Agamben (2002AGAMBEN, G. Homo sacer: o poder soberano e a vida nua. Belo Horizonte: Ed. UFMG, 2002.), in turn, is attentive to the fact that the scientific method also appears in this scene, by pushing the experience as far out of men as possible: instruments and numbers. For him, the ideal of authentic experience, which seeks truth through an objective, systematic and controlled path towards knowledge, by excluding from it sensitivity and fantasy, disregards singularity as a dimension of the experience itself.

In this sense, we propose to say what has been lived in the deinstitutionalization processes, rescuing the power of a method that emerges as an effect of the singular position of the experience subject, the position of a narrator. One who “is not interested in transmitting the ‘pure in-itself’ of the narrated thing as information or report” (Benjamin, 1994BENJAMIN, W. O narrador. In: BENJAMIN, W. Magia e técnica, arte e política: ensaios sobre literatura e história da cultura. São Paulo: Brasiliense, 1994. p. 197-221. (Obras escolhidas, v. I)., p. 205), but dives into one’s experience, from which this “narrated thing” arises as an effect of the construction of the narration experience itself. In the narrative, therefore, “the narrator’s mark is printed, like the potter’s hand on the clay of the vase” (Benjamin, 1994BENJAMIN, W. O narrador. In: BENJAMIN, W. Magia e técnica, arte e política: ensaios sobre literatura e história da cultura. São Paulo: Brasiliense, 1994. p. 197-221. (Obras escolhidas, v. I)., p. 205).

From this perspective, we seek, in the first part of the study, to transmit the daily life of deinstitutionalization. We share fragments of memories of encounters with institutionalization sites, which are unhealthy and violate rights, and are sustained by the production of disability, dangerousness and mental illness. This path leads us to dialogue with the elaboration of Agamben (2002AGAMBEN, G. Homo sacer: o poder soberano e a vida nua. Belo Horizonte: Ed. UFMG, 2002.) on the articulation between the legal-institutional and biopolitical models of power in the legitimation and naturalization of the psychiatric asylum horror in the middle of the 21st century. For this, we compose elements from different stories that we experience and listen to in these paths, creating characters and a narrative in three stages: the asylum, the justice, the neighborhood.

When narrating the asylum, the justice and the neighborhood, we resort to the positions of the scrapper narrator (Gagnebin, 2006GAGNEBIN, J. M. Lembrar, escrever, esquecer. São Paulo: Ed. 34, 2006.), of the day chronicler (Arrigucci Júnior, 1987ARRIGUCCI JÚNIOR, D. Fragmentos sobre a crônica. In: ARRIGUCCI JÚNIOR, D. Enigma e comentário. São Paulo: Companhia das Letras, 1987. p. 51-66.) and of the concentration camp testimony (Gagnebin, 2006GAGNEBIN, J. M. Lembrar, escrever, esquecer. São Paulo: Ed. 34, 2006.) to accomplish what we consider an ethical and political work of memory, relying on the power of sharing narratives of the lived, pointed out by Benjamin (1994BENJAMIN, W. O narrador. In: BENJAMIN, W. Magia e técnica, arte e política: ensaios sobre literatura e história da cultura. São Paulo: Brasiliense, 1994. p. 197-221. (Obras escolhidas, v. I).) as a method of producing knowledge in the form of knowledge of experience. Knowledge that calls the subject to take responsibility for the precariousness of their discursive position by resisting technicality and generalization.

Finally, with the narratives, from the visceral processes lived we try to unravel elements that can support the delicate, complex and difficult practices that dare to dismantle the asylum and build the mental health care. At this point in the study, the focus falls on the “aspects of doing” that produced the conditions for institutionalized people to return to life in the territory, through an unending work of weavings of the singular in the collective, whose substance were stories reconstructed into narratives of the possible. From the experience we seek to extract some operating principles of deinstitutionalization, which function less as a response to the various obstacles that constitute the field of mental health and more as possible coordinates for the composition of singular and contextualized ways of acting in it.

Weaving the singular into the collective as a possible gesture to deinstitutionalize it is saying “yes” to the invitation of Agamben (2007AGAMBEN, G. Profanações. São Paulo: Boitempo, 2007.) to desecrate “the devices of power that seek to subjectify human actions in law” (Assmann, 2007ASSMANN, S. Apresentação. In: AGAMBEN, G. Profanações. São Paulo: Boitempo, 2007. p. 7-14., p. 11), relying on the possibility of a political action able to restore to the common use of men what was sanctified by the institutions in these devices. This will imply renouncing the self of the Cartesian cogito, which wants to be sovereign and one in order to try to give way to the pre-individual that makes up the life of each one of us, which resists closing in a substantial identity and, therefore, launches us, through the most banal and tiniest gesture of daily life, in the experience of a bond to the other capable of continuously working the social fabric.

The asylum

Wide smiles, vivid looks and vibrant bodies, they spoke with their hands, eyes, lips, throat and neck. One of them said a few loose words. The other told stories with his fingers, expressions on his face, gestures and shaking of his head. The third one made loud, high-pitched sounds, touched people, intensely expressed dissatisfaction. Whenever we arrived at the asylum they received us smiling and determined to talk.

Amid the dark, labyrinthine and dirty environment, their eyes shone through the cracks in the front door when they noticed our arrival. The lively reception contrasted with the repetitive gesture of the employee who allowed our entrance to the place. Swinging a bunch of keys, she investigated who we were and slowly unlocked the front door. One by one, the locks opened, showing small pieces separated by bars and narrow corridors whose walls were filled with moisture and mold. A speech full of references to love and charity accompanied the journey inside the asylum to justify it: motherhood, adoption, solidarity, vocation, sacrifice for the other.

Here everyone treats me like a mother,55In the narratives shared here, we chose to highlight the characters’ speeches in italics about the deinstitutionalization work experience. says the owner of the asylum, proud of her offspring of people expropriated from the most fundamental rights. There were also the psychotropics. Between one prescription and another, more similarities than differences. Antipsychotics and sleep inducers were like stamping letters on pages of a homogeneous and fraudulent file. The effectiveness of homogenization was not free. It sought social alliance with fear, which was increasing in the face of the various initiatives to close the asylum. They have nowhere to go. Families do not want them. They are dangerous. Incapable. They can die. They can kill. Undifferentiated and alarming designations accused the desubjectivation taking place there.

Go back home, said one of the asylum residents, putting her fingertips together to make a house triangle with her hands and, with her arm in the direction of the road, the verb go. Another resident seemed to agree, for the joy with which, in response to the gesture, he repeated the name of his hometown. The clear announced expressions of the will were followed by the subject’s devastating speech. Impossible! They are very aggressive! This one does not understand things. Poor thing!

When no longer expected, an opening is installed and porosities begin to constrain the viscous logic inside the asylum. A judicial ban is enacted and the public manager is appointed as an intervener to end that business of confining people.

The interdiction decision dragged on for years and was made possible by the return - accompanied by prosecutors, health and social assistance teams - of a group of asylum residents to therapeutic residences66Therapeutic residences are homes for people with a history of long-term hospitalizations in psychiatric hospitals, aiming to promote the reintegration of these people into the community. in their hometown, after documenting their health conditions. Such documentation gave rise to a lawsuit, for which an intervener was designated, the owners were to move away and the interns were determined to return to their municipalities.

One of these people was an elderly woman who had spent half her life in nursing homes: first in a custody hospital, then in this assumed nursing home. Its history documented and attached to the process opened at the Public Prosecutor’s Office made deinstitutionalization intervention possible.

Hat on her head covering her face, cigarette in her fingers, skinny and pale body, the lady spent hours at random in the corridors of the institution. Do you remember your city? Do you want to go back there? The head raised in response to our question showed an immense wound in the place of the nose through which the dense tobacco smoke came out, which the hat protected from the eyes of astonishment of those who approached. Shielding the horror mirror of a face that was no longer. She has nose cancer, warns the employee. She does not want to treat it. The institution’s speech was nauseating. The sisters and the guardian do not visit. The doctor said advanced cancer. She speaks very little. She never goes outside. She only smokes that “throat-scraper.”

Two weeks after her return to her hometown, this lady died during a nursing procedure on her face. In the waiting room, a caregiver from the therapeutic home and a professional from the Psychosocial Care Center (Caps) listened to the nurse’s bewildered report. Her brain was filled with fly larvae. She convulsed and was gone. This death produced an acute and painful incision in the ongoing deinstitutionalization work. Turning point in the process, it not only subsidized the case file with medical reports and death certificates, but also placed the operators of the law face to face with institutionalized people through the story of the lady in the hat.

The end of the asylum demanded that, while people did not return to their cities, care on that place would count on municipal teams. Time for change in homogenizing routines: lifting carpets, shaking mattresses, throwing out collective toothbrushes, sending stored medications for health surveillance, returning individual belongings. Time to dare organizing conversation circles and meetings with residents, collective spaces open to listening. To sustain the possibility of the disorderly organization of speeches, to open up to the singularity, to promote the meetings. To accompany each and every one and explore possibilities.

From possibilities it emerged: they are asking to go home, says the psychologist of the intervention team, when celebrating the speaking gestures and the loose words of his three countrymen. They want to get married. They want to take their companions, to which one resident nods, while the other rubs the left ring finger with her right hand.

The communication called for other languages. On the screen of a cell phone, pictures of the place where they lived were shown, reaching the status of phrases and images of squares, bus stations, churches and street corners. Narrative bridges of a conversation that produced smiles and stories told in their own ways, which were gradually decoded between looks, sounds and gestures that had an address.

He is more dependent, needs a caregiver, but communicates a lot and makes friends easily. They [women] have more autonomy and are able to organize themselves well in their daily activities, as they already did when they lived somewhere else. On the side of the team of caregivers, the value of the tie to the other was affirmed for the support of everyday existences, among remnants of the hospice and embryonic openings to the city. Bets from those who worked there since the establishment’s judicial ban.

The Justice

The three friendly residents who received us at the asylum entrance had a history similar to that of many who lived there. They were judicially interdicted, considered unable to speak and decide on their own behalf. They could no longer take responsibility for the acts of civil life: getting married, voting, working, managing assets. Also, informal prohibitions: not raising children, nor choosing loving partners and friendships, or deciding on the simple things of the day.

Several times, as managers of the deinstitutionalization processes, we met with the institution’s trustee. The idea she had of her residents and the future she decided on their behalf could not be bleaker. The painting of chaos and the appeal to risk truncated a dialogue that took two steps in the direction of life outside and went back three steps towards the asylum. Not even the horror testimonies of the place convinced her that a neighborhood life would work for them. They are incapable, we either interned them or they were going to get themselves killed. They almost set the house on fire. None of the neighbors wants to know about them. They went out at night, prostituted themselves. This one is needy, he used to go to people’s houses all the time to bother. Thus, she refused to hire caregivers with the benefits of continuous provision, to enable a housing that would be two blocks from the health post. I cannot find a caregiver to hire. Faced with our insistence, she refers to a woman from the neighborhood who was a caregiver for the elderly and perhaps would accept the job.

The trustee’s alleged agreement coincided with the sending of a petition, signed by her, to the forum of the city of origin of the three residents. In the document, she demanded a hearing to change the trustee and recommended the asylum’s owner for the position. The gesture is violent and revealing. As in the story of the overseer and the slave, of the pregnant woman extradited to the countryside, of the holy church that protects abusers, the one who is expected to be cared for is a violator.

It turns out that the asylum that had supported the interdiction of dozens of lives with its “charitable” bars was now banned. In this period of transition, from the judicial ban to the effective removal of residents, the lives confined there have also transited. From the collective room to rooms with their personal belongings, smaller spaces shared according to bonds of friendship and conjugality.

During the various visits to the asylum, we were like old acquaintances of the residents, who, as exiles, awaited the necessary procedures from public agents to return to their territory. There were many meetings and hearings in the prosecutor’s offices and forums of the counties of the cities of origin and in the spaces of municipal and regional management of health and social assistance.

We were there, then, at the hearing requested by the trustee of the three friendly residents, to hear yet again her hostile opinion to the proposal for deinstitutionalization. The asylum’s owner was also present, repeating the usual, now in chorus with the law representative. This law does not work. The government has already shown that it did not have the capacity to put it into practice, says the judge at the beginning of the session.

Arguing for the freedom of institutionalized people before authorities who disqualified the psychiatric reform law implied putting the magnifying glass over lowercase letters. Being heard there required advocating for a life of sleeping in one’s own home, choosing what to eat for lunch, changing the TV channel, sitting on the beach chair on the sidewalk, visiting the neighbor. Summoning the thought of compendiums to the concreteness of everyday life. A daily life where questions can be asked: “craving for what?”, “thirsty for what?”.

Places of disproportionate exercise of power over life call for public contour and collective fabric of discourse. Intricate problems are not meant to be solved among the few. In addition to the judge, the prosecutor, the trustee, the representative of the municipality and the asylum’s owner, the health and assistance teams of the state and municipality came in force to the referred audience. Technical areas embodied in professionals who were there to build solutions, even if it meant listening that their actions were ineffective.

Justice suffers from the fragility of the unborn. It is necessary to desire it intensely, to care for it closely, to welcome its cry, to bet on its uncertain future. If this is not done, life will not be successful. This case is not about psychiatric reform, Your Honor. It is about the right of people with disabilities, we risk contradicting politely and subtly to evade the decided sentence and desecrate sacred certainties without harming the pride of those who, not without discomfort, arbitrate over the lives of others. Well, the Statute for Persons with Disabilities is new, we still do not know very well how to operate what it establishes, the judge reacts, moving from the crystallized position of impossibility to the place of those who do not know how to do it.

The plan we advocated did not detract from the return to neighborhood life, betting on the possibility of living in a house owned by one of the asylum residents, rented for years by the trustee. Such a plan was the effect of listening to the residents themselves, who told us their life stories in gestures, fragments of phrases and photos of the city. Also the effect of listening to health and assistance professionals from the municipalities of origin, who knew, here and there, passages in the lives of their former users.

The recommendations we made at the aforementioned hearing were in line with those of the prosecutor who requested the judicial ban of the unhealthy establishment and manifested herself in the process in favor of the deinstitutionalization of residents. The terms of this official demonstration were soaked with horrors felt in an inhumane place where she did not shy away from entering and seeing with her own eyes. Bathrooms without a door, toilets without a seat and without hygiene material available. Meals served on plastic plates on the floor by half a dozen employees for a hundred and a half inmates. Precarious electrical wiring, cigarettes lit on torn mattresses on which inmates slept due to excess medication. Bars, isolation rooms, people tied with sheets, hypermedicalization.

After all that was said, in that public scene, the possible decision: to evict the house, hire a caregiver, transfer the trustee, respect the conjugalities, friendships and bonds built between institutionalized people and make it possible to return to neighborhood housing, which for some meant the possibility of meeting friends and acquaintances of a lifetime. A little incredulous, perhaps wondering how these people defined by the courts as incapable would live together and live in society after decades of asylum, the judge finally hit the gavel.

The Neighborhood

After the tense audience, we gave up on the inert dialogue with the trustee, leaving this to the Judiciary and the Public Prosecutor’s Office, and dedicated ourselves to sewing a possible daily life outside the asylum. We went to meet and talk to former neighbors of the institutionalized people in the neighborhood where the home owned by one of them was located, including the elderly caregiver mentioned above. It was surprising to learn of the affection of the neighbors for the three friendly residents who always received us when we arrived at the asylum. One used to make cake and bread to share with the ladies on the street. Another one had already worked cleaning the bathrooms in the square. One had friends in the front house. The other was angry and did not talk to anyone.

They did not bother anyone, they grew up here with us, was the remarkable saying of immersion in the neighborhood. Conversations with neighbors made the horizon of work concrete. The therapeutic project was no longer a set of ideas built on visits to the institution, but a possible plan of existence, with faces, landscapes, windows, door, corner and sidewalk, deconstructing the narratives of the “not.”

Then, we visited the possible caregiver. Among quiet streets, we find the low-walled house and vivid memories, told over old photo albums. Thrilled, the girl decided to go to the nursing home to visit her old neighbors. Getting there, smiles, loud sound, hugs, tears. Hours of conversations, memories, stories. The care team welcomed and shared the joy of the reunion with the residents. Amid the ruins of the asylum and the attempts to rebuild a temporary living space, those moments brought us other images of institutionalized people.

Photos of birthdays and weddings, taken by the neighbor, spoke of times of eccentric color combinations, hair disheveled with hairspray and wide coats with long shoulder pads. The friendly residents who received us when we arrived at the asylum started to appear in the yellowed photos, between familiar faces and places, simultaneously showing the possibilities of their leaving there and the distance that life had taken from them. Images that testified to everything the asylum had denied them.

The woman had agreed to be hired as a caregiver and perhaps took over the trustee. It was as if the asylum experience, the marks it leaves on us and the way they are imprinted on the flesh do not authorize another ethical position. The next day: I cannot do it, I wanted to do it, but at that point in my life, I cannot, she said by text message. However, it was necessary to remove from the intensity of the experience what was possible in it: to follow the traces of the bonds of affection and neighborhood. Hiring a caregiver, even if without previous ties, could work, since the neighborhood had been willing to help with whatever was needed. There was a lack of a trustee to assist in the management of benefits.

From a meeting in the forum around another situation that involved the state, the municipality and the Judiciary, a random sidewalk conversation emerges. The health secretary of the city of origin of the three fellow residents comments that she can no longer imagine them living in that place with so many horrible stories. She remembers the nursing technician present at the audience that we had just left and suggests that maybe she could take the trustee. The secretary proposes:

She already had experience managing the care and benefits of people with a history of institutional dependency, was affectionate and respectful of the rights of her residents. I could hire a caregiver during the day to help with the house, food, medicine. The clinic staff would visit frequently.

Caring for in the territory, promoting autonomy, and singularizing living appeared in the manager’s discourse as if they had always been there. Effects of meetings and conversations of deinstitutionalization, which in different ways brought about other sensitivities and discursivities in everyone involved in the process.

Within a month, the three friendly residents of the asylum were back in the neighborhood. Two of them took their partners with them. The house, which had three bedrooms, accommodated the two couples well, plus one more resident. From the sidewalk one could still hear the fights of one with the caregiver, the sounds of the soap operas of the other and the repeated words of the third. Cute, she told anyone who passed by. The smells of bread in the morning and cake in the afternoon could be felt from the street, just as the bitter scent of smoke from one of the spouses’ straw cigarrette. It was also worth noting the somber silence of the other, which was second only to the tranquility of the freshly made post-lunch in the kitchen of the house of a lifetime. It was siesta time.

The inseparable visibilities of deinstitutionalization

This narrative, in which we weave a series of elements that make up the stories we live in and with which we find ourselves in the work of deinstitutionalization, produces two inseparable visibilities through its scenarios. As a plot of experiences of the health work micropolitics, it envisions the naturalization of horror by showing the rotten entrails of institutional confinement of people considered unable to manage life and dangerous to inhabit the city, under the argument of mental illness. As a record of intersectoral work in public policies, it opens the doors of institutional spaces and devices of power, shedding light on tables and processes in which public agents decide the destinies of people whose reality they are often unaware of.

Through these two inseparable visibilities - showing the interstices of the hospice and raising the curtain of the public scene responsible for it - the stories told here, if slowly examined, lead us to look more closely at the fabric of our existence, singular and collective, its breaks, sutures, tears and patches. They also look at a face, whose hat was a barrier to what we do not want to know about slow and untimely killings, which also concern this fabric.

With regard to the naturalization of horror and the apparatus of power that makes it possible, we refer to Agamben’s (2002AGAMBEN, G. Homo sacer: o poder soberano e a vida nua. Belo Horizonte: Ed. UFMG, 2002.) dialogue with Foucault, about the entry of human life in the mechanisms and calculations of state power, when politics becomes biopolitics and begins to work to produce docile bodies, under the argument of the population’s health. Agamben (2002AGAMBEN, G. Homo sacer: o poder soberano e a vida nua. Belo Horizonte: Ed. UFMG, 2002.) questions the relationship between the capillarity of this biopower, which does not repress, but incites ways of life (Foucault, 1988FOUCAULT, M. História da sexualidade I: a vontade de saber. Rio de Janeiro: Graal, 1988.), and the totalitarianisms of the 20th century. The focus of his analysis lies in the proposition that sovereign power was not replaced by disciplinary power, but reedited in it, reaching its peak in the production of the concentration camp.

For Agamben (2002AGAMBEN, G. Homo sacer: o poder soberano e a vida nua. Belo Horizonte: Ed. UFMG, 2002.), the juridical-institutional and biopolitical models of power are combined in the juridical-political structure of the camp, in which the sovereign power is no longer limited to arbitrating over exceptionality, but does it normally. In his theoretical journey through archaic and modern figures of law, the author proposes that modern biopolitical life reissues the naked life of homo sacer, a life subject to a (sovereign) power of death; irreparably exposed to the abandonment relationship. It is in this condition that naked life enters the law as excluded/included, which characterizes the very structure of exception; the same that appears in the foundation of the legal-political system and in the reason of the concentration camp. In the latter, naked life is inscribed in the biopolitical sphere, while exception and norm become indiscernible (Agamben, 2002AGAMBEN, G. Homo sacer: o poder soberano e a vida nua. Belo Horizonte: Ed. UFMG, 2002.). This is how the state of exception through which citizens’ fundamental rights are suspended ceases to be referred to a provisional situation and presents itself as a permanent zone of indistinction between exception and rule, fact and law.

The lives imprisoned in psychiatric asylums speak, precisely, of the role of the exception in its complicity with disciplinary and biopolitical techniques. With the consent of public agents, law representatives, and justified by the beliefs of the fallibility or inadequacy of public policies, asylums remained outside the legal system, despite the rights legislated by the 1988 Constitution and the legal framework to which it gave way - including the Brazilian Psychiatric Reform Act of 2001. In these places we find ourselves, on the one hand, facing the paradox of judicially claiming the belonging of (institutionalized) people to the human world through the right to health. On the other hand, entering the legal and institutional structures made us question the place of the law operators when deciding on this primary claim. In the experience of “within Justice,” the acute question that could not remain silent: which laws for which lives?

Agamben (2002AGAMBEN, G. Homo sacer: o poder soberano e a vida nua. Belo Horizonte: Ed. UFMG, 2002., p. 35) will say that “the exception is the structure of sovereignty” and “the original structure in which the right refers to life and includes it in itself through [its] own suspension.” In this sense, the relation of the law to life in its origin would not be the application, but the abandonment, which the concentration camp - as a biopolitical paradigm of modern life in the West - would come to demonstrate, when reissuing this zone of indifferentiation between man and beast, nature and culture, in which sovereign power and naked life come together. Indistinct threshold between natural and social life, which creates the place of exception and justifies violence and death through biopolitics (Agamben, 2002AGAMBEN, G. Homo sacer: o poder soberano e a vida nua. Belo Horizonte: Ed. UFMG, 2002.). This is how the institutionalized lives in the asylum are lives of exception, and the psychiatric asylum is one of the ways of presenting this structure that makes the docile body and the naked life coincide, when the decision to kill takes place, no longer in the gesture of taking life, but in abandoning it to its own ability to kill themselves.

Narratives of the possible

There are situations when forgetting or shutting up is not a possible choice. Faced with the horror of asylum, deinstitutionalization, its subjects and stories claim to leave basements and shadows, they demand a status of existence, a place on the public scene. Transmitting the experiences of deinstitutionalization, passing on to the shared record what has marked the body singularly implies, in our view, a position of testimony. Speaking/writing experiences with institutionalized people is, thus, an ethical and political work of memory. Faced with stories of everyday violence that imprisoned lives in the asylum, nullified singularities in the diagnosis and legally legitimized a place of abandonment and death, the testimony emerges as a possible ethical and political action to weave in the social bond the unspeakable expression of pain, against extermination and its naturalization.

When we say “testimony,” we refer to what Gagnebin (2006GAGNEBIN, J. M. Lembrar, escrever, esquecer. São Paulo: Ed. 34, 2006.) proposes, in his dialogue with Walter Benjamin about the conditions of experience in post-totalitarian societies, as an ethical and political injunction to not let the past fall into oblivion. Thus, more than accommodating experiences in the family senses, in the testimony it is a matter of giving way to the unbearable in the narrative, not to feed resentment, but to “dare to sketch another story, to invent the present” (Gagnebin, 2006GAGNEBIN, J. M. Lembrar, escrever, esquecer. São Paulo: Ed. 34, 2006., p. 57).

A witness would also be one who does not leave, who can hear the unbearable narration of the other and who accepts that their words carry on, as in a relay, the story of the other: not because of guilt or compassion, but because only the symbolic transmission, assumed despite and because of unspeakable suffering, only this reflexive resumption of the past can help us not to repeat it infinitely. (Gagnebin, 2006GAGNEBIN, J. M. Lembrar, escrever, esquecer. São Paulo: Ed. 34, 2006., p. 57)

This is what is at stake for us when we take the experiences of deinstitutionalization as an object of study, making its narrative a method - a path. Gagnebin (2006GAGNEBIN, J. M. Lembrar, escrever, esquecer. São Paulo: Ed. 34, 2006.), however, tells us that the contemporary narrator, the one who can witness the horrors of concentration camps, founding or reissued by modern biopolitics, is no longer epic and triumphant. This narrator inhabits the ruins of the narrative and dares to “a transmission between the pieces of a crumbed tradition” (Gagnebin, 2006GAGNEBIN, J. M. Lembrar, escrever, esquecer. São Paulo: Ed. 34, 2006., p. 53). A scrapper like the garbage collector of modern cities, he picks up the remains, the debris, which is put aside, without use, meaning or importance: that “with which the official history does not know what to do” (Gagnebin, 2006GAGNEBIN, J. M. Lembrar, escrever, esquecer. São Paulo: Ed. 34, 2006., p. 53). The scrappy narrative thus dares to transmit the unspeakable, as in the unspeakable suffering of the wars of the 20th century and their concentration camps.

In the same direction, Arrigucci Júnior (1987ARRIGUCCI JÚNIOR, D. Fragmentos sobre a crônica. In: ARRIGUCCI JÚNIOR, D. Enigma e comentário. São Paulo: Companhia das Letras, 1987. p. 51-66.) views the chronicle as a genre of literature linked to the newspaper and defines the chronicler as an artisan of experience, whose account is woven with what is lived, the usual commentary, the rhythm of everyday life. For the author, the chronicle writes the colloquial of the conversation and the contingent tension that makes writing reach the intimate substance of its time and, simultaneously, avoid the corrosion of the years. Unpretentious as the narrator’s scrappy narration, the chronicle weaves a form of memory and history that, when witnessing life, documents an era.

The narratives of the asylum, of the justice and of the neighborhood, woven between the positions of the testimony of the camp, the scrapper narrator and the chronicler of the day are, in our perspective, the effects of an injunction to count. To count so as not to forget, to witness the imponderable, to invoke thought, to summon the gaze, to share responsibility, to make history go forward and to invent ways out. In order to try to convey what was left of the experience, after nausea, insomnia, anger. To join what was left of what was lived in narratives of the possible, as an imaginable movement, in precarious coordinates of walking and doing in territories of exception and biopolitical violence. To sustain, in a universe of capital bans inflated by the fear of madness and by the discredit in public policies, the power of the small letters - the raw material of mental health work. As pointed out by Agamben (2007AGAMBEN, G. Profanações. São Paulo: Boitempo, 2007.), desecrating the power devices, placing their agents face to face with the smallest, the banal, the everyday, the precariousness of which we are made, is to restore the world to the common use of men.

In these narrative paths, some questions arise: can a singular story point out ways to process social processes? Are there, in this experience, possible coordinates of a method for thinking/operating deinstitutionalization processes?

By placing the magnifying glass over the traces of experience, the discourses that emerge in the processes of deinstitutionalization appear in the foreground. From the perspective of the different actors - health professionals, legal operators, managers, family members - who report in the records and hearings, the stories of people whose lives are on the agenda are the object of different interpretations that aspire to the status of reality. The other’s life is spoken, produced as an object. It only matters as part of a discourse that does not say about it, but about what it represents for some instance of knowledge-power. It is the reign of information, denounced by Benjamin (1994BENJAMIN, W. O narrador. In: BENJAMIN, W. Magia e técnica, arte e política: ensaios sobre literatura e história da cultura. São Paulo: Brasiliense, 1994. p. 197-221. (Obras escolhidas, v. I).), to cover the intensities of life and homogenize the ribs of experience.

The Judiciary is called upon to arbitrate about these lives objectified in the experts’ speeches, which animate even the common sense of those who do not speak from the place of technical knowledge. These speeches that decide fates in the legal-political scene often do not want to know the singularities. It is the violence of saying nothing about the subjects that concerns them, when discursivizing lives excluded from the law and included in the legal system, as an exception to the law, by reference to the norm (Agamben, 2002AGAMBEN, G. Homo sacer: o poder soberano e a vida nua. Belo Horizonte: Ed. UFMG, 2002.).

The construction of the norm is based on the double movement of individualization and generalization of ways of life, operated by the normatizing effect of biopower (Foucault, 1988FOUCAULT, M. História da sexualidade I: a vontade de saber. Rio de Janeiro: Graal, 1988.). In the process, what belongs to the social fabric becomes individualized, while we forget about its field of origin. The expert - convinced - does not realize that what he looks at and seeks to understand has something of his own, insofar as he composes things and himself in this fabric. He does not realize that what he aims at with his knowledge has the form that the familiarity of his gaze has taken in relation to what he looks at. It departs from the social fabric when arbitrating, as the sovereign, about which lives are worth living (Agamben, 2002AGAMBEN, G. Homo sacer: o poder soberano e a vida nua. Belo Horizonte: Ed. UFMG, 2002.). Thus, judicial decisions seal confined destinations, building an object of intervention that is no longer the life on which one would have to decide, but a life generalized in biopolitical strategies and devices and included in the legal system as an exception, by reference to the norm, in which there is no singularity nor belonging: only abandonment.

Contrary to this, deinstitutionalization is woven into the reconnection of the singular to the collective, sewing the remains of the subject to the fabric from which they have been expropriated. We have here the emergency ground of what we suppose to be an operating principle for the dismantling of asylum in judicialized deinstitutionalization. It is a work of narrating stories shattered in time and expropriated from their place of social belonging. Therefore, it requires transiting through places where it is possible to talk about life outside of technique, to collect words, nominations, scenes, images, stories narrated by those who cohabited a territory, to make the singular emerge from/in the collective and so weave reconnections.

How can these minor truths be included in court records? Are we able to narrate what is lived outside the categories of illness, disability, dangerousness - capable of making ourselves heard in the outline of legal-political spaces and times? What can we do in those places where biopolitical devices and normative legal arrangements are found in tyrannical pre-conceived plots?

We can be indignant - it is a fact - in the face of speeches of protection in the service of mechanisms that, by reference to the law, violate citizens’ rights and increase helplessness. We can paralyze - it is true - where it is clear, as stated by Agamben (2002AGAMBEN, G. Homo sacer: o poder soberano e a vida nua. Belo Horizonte: Ed. UFMG, 2002.), the point at which violence and law express Moebian relationship.77Lacan takes a well-known figure from topology, the Moebius strip (1858). It is a ribbon that after a half turn has its ends attached. The transit through this ribbon, so well portrayed by Escher in a 1963 work called Moebius Strip, reveals that, although we can visually conceive an artifact with two sides (the inside and the outside), the experience of its handling puts us in front of a strip that has a single face. This topological figure serves to give an image to relationships between instances that, although at first glance appear to be in discontinuity, are presented in continuity (Lacan, 2003). Or we can infiltrate our questions through the speeches of certainty and collect the doubt, the miscalculation, the uncomfortable question that arises from everyday life.

Thus, our insertion in these desinstitutionalization tables took place as a disassembly function. Dismantling the cohesion of the impossibility discourse built on the logic of normalizing life. Weakening anachronistic certainties, hasty and detached conclusions from the experience. Introducing an ethics of the question, which appears here as another operating principle of deinstitutionalization and invites us to examine the detail, to welcome the apparently banal, which does not fit in the textbooks, as the community is the fabric in which it is managed.

Faced with the imposition of general and apparently self-explanatory categories of the existence of others, an acuity to the minimum, the rest, which escapes - as the scrapper narrator of Gagnebin (2006GAGNEBIN, J. M. Lembrar, escrever, esquecer. São Paulo: Ed. 34, 2006.) and the chronicler of the day of Arrigucci Júnior (1987ARRIGUCCI JÚNIOR, D. Fragmentos sobre a crônica. In: ARRIGUCCI JÚNIOR, D. Enigma e comentário. São Paulo: Companhia das Letras, 1987. p. 51-66.) teach us. Bringing the ordinary, the genuine, the unpretentious event - that which remained in us from the encounter with the other, antidote against the thrust to the generic, categorical discourse, made of suspicions and preconceived sentences. In this process, it is the common88Let us remember the double meaning that adds the word “common” - comum, in Portuguese: “adjective: 1.relative or belonging to two or more beings or things. 2. that is usual, habitual “(Houaiss, 2001). that asks for passage, whether in the profane dimension - that which, when being desecrated and returning to worldly life, has its use reinvented -, whether as an experience of the pre-individual that makes up the life of each of us (Agamben, 2007AGAMBEN, G. Profanações. São Paulo: Boitempo, 2007.). A common that appears in the history of institutionalized people, that summons the common in us and makes badges fall to situate and sustain the human in each of those involved in the decision-making processes of deinstitutionalization.

In the essay “Praise of profanation,” Agamben (2007AGAMBEN, G. Profanações. São Paulo: Boitempo, 2007., p. 65) reminds us that “consecrating (sacrare) was the term that designated the exit of things from the sphere of human law,” whereas “profaning meant returning them to the free use of men.” Possible path of deinstitutionalization, which seeks to restore life to the social fabric in the singularization of life - another operating principle that decants from the experience woven in the stories we share here. Effect of (re)connection that is made between the life of the records’ managers (legal operators and health professionals), the life confined and objectified in them and the life of institutionalized people, narrated by the neighborhood and by those who dared to enter the asylum and look at madness with their own eyes.

The production of a common emerges, then, as the operating principle of the deinstitutionalization that decants from this chronic experience. It concerns the very possibility of the look that locates the singular in the paradoxical position of being both unique and ordinary. It could happen to any of us to end up in the asylum. It could happen to any of us to be legally prevented from deciding on ourselves. Legalized injustice could affect any of us. The singular subject is any individual (Agamben, 1993AGAMBEN, G. A comunidade que vem. Tradução António Guerreiro. Lisboa: Presença, 1993.).

The narrative that the judicial process produces isolates the subject from their common existence, placing them in the zone of indistinction referred to by Agamben (2002AGAMBEN, G. Homo sacer: o poder soberano e a vida nua. Belo Horizonte: Ed. UFMG, 2002.) as the sacred place of homo sacer, which is excluded/included from/in the legal system, in its place of exception. Thus, the records produce an image of institutionalized people that is often not favorable to deinstitutionalization. It will be necessary to enter the scene to look beyond this frozen image. In this invitation to the profane, the representatives of law and knowledge also desecrate themselves, falling from the position of the sovereign to inhabit the daily occurrence of the incarnate encounter with the other, who has a voice and a face - which means that, inside the asylum, a diverse look gains body.

Perhaps here we have one more operating principle, a condition for the possibility of the previous principles. This look beyond the frozen image of the judicial process implies placing the body itself where life is dying in the asylum. The possibility of seeing what was not possible before requires a presence in the confined scene, only to return to the public scene afterwards, readjusting the focus to the life that pulsates in the territory. Transit movement that can produce other stories for the singular lives of institutionalized people, inside and outside the records.

Let us return to a small fragment of a text by one of the greatest Brazilian chroniclers, Rubem Braga (1986BRAGA, R. Mar. In: BRAGA, R. 200 crônicas escolhidas. Rio de Janeiro: Record, 1986. p. 23-24., p. 23). In this way he starts his text “Mar” (in English, “Sea”):

The first time I saw the sea, I was not alone. I was in the middle of a huge band of boys. […] Among us there was only one boy who had already seen it. He told us that there were three kinds of sea: the sea itself, the tide, which is smaller than the sea, and the wake, which is smaller than the tide. Soon we had an idea of a huge lake and two ponds. But the boy explained that it wasn’t. The sea came in by the tide and the tide by the wake. The wake came back and forth. The tide ebbed and flowed. The sea sometimes had foam and sometimes it didn’t. This disturbed the image even more. Three ponds stirring, emptying and filling, with a few rivers in the middle, sometimes a lot of foam, all this very salty, blue, with winds.

Rubem Braga reminds us that we do not see only with our own eyes, that looking - as a construction of meaning - is something that cannot be done alone. Narrating from the point of a boy who has never seen the sea, Braga (1986BRAGA, R. Mar. In: BRAGA, R. 200 crônicas escolhidas. Rio de Janeiro: Record, 1986. p. 23-24.) makes us think about how we compose the look in life. There is a first time of seeing - Lacan (1998LACAN, J. O tempo lógico e a asserção da certeza antecipada. In: LACAN, J. Escritos. Rio de Janeiro: Zahar, 1998. p. 197-213.) would say an instant of seeing -, in which the known image is not looked at, but the known image is anticipated, as the one registered in the deinstitutionalization records. But if we keep our bodies on the scene, taking too long to collect the elements that are beyond this anticipated image, recording the movements of those who keep us company, we are caught in the surprises of the look, like the boy who sees the sea for the first time.

If it is well founded that the other can present itself as an obstacle to the gaze and not make us see more than the known lagoons, it is also true that seeing the never seen is only possible in the company of another, a similar being capable of validating the new perception as part of a shared reality and not the effect of a delusional individual reverie. Freud (2004FREUD, S. El malestar en la cultura. In: FREUD, S. Obras completas. Buenos Aires: Amorrortu, 2004. v. XXI, p. 57-140.), in “The Uneasiness in Civilization,” reiterates: the similar is present, paradoxically, as a source and possibility of crossing the existential malaise. Among what he shows us with his narrative of what he saw, opening the spectrum of what has already been said about the object that we want to circumvent via perception, we infiltrate our own forms of insertion into the world of the visible, the sayable and, in doing so, we can open a new vein of meaning.

Deinstitutionalizing is thus weaved between various looks, narratives and actions intertwined in what we call the network - the last of the operating principles of the constellation that we are setting up to think about the process of deinstitutionalization. A network capable of reinventing ways of looking, a network that relies on the other as the one that validates the new open path and that shares the responsibility for a collectively forged experience. For if there is any certainty about the work of the scrapper narrator, the chronicler of the day or the testimony of the camp, it is that, for their narratives of the possible and for what they produce in the world, they are ethically responsible.

Final considerations

Place of endless tensions, the Brazilian psychiatric reform produced essential changes in the scenarios of mental health care in the direction of singular, collective and territorial care. A substitute network of psychosocial care services was established based on experiences of deinstitutionalization of the clinic itself (Palombini, 2006PALOMBINI, A. L. Acompanhamento terapêutico: dispositivo clínico-político. Psychê, São Paulo, v. 10, n. 18, p. 115-127, 2006. Disponível em: <Disponível em: https://bit.ly/2MxsOOU >. Acesso em: 4 nov. 2019.
https://bit.ly/2MxsOOU...
), its hospital-centered tendency, its tutelary disposition. However, the production of the institutionalization of living, in spite of the rights of people in distress, continues to proliferate. Asylums, these places of the past, continue to perpetuate today, strengthening the asylum logic, peeking at the weaknesses of health and social protection networks, inside and outside official services - these now under frank attack by the power instituted in the country’s central government.

In the name of protecting a life limited to the biological dimension, health and social protection networks and practices are often captured in devices that slaughter the singularity with the bureaucratic organization of time, seclusion in the private space, nosographic capture, the pathologizing interpretation and the segregating look. Coupled with the sovereign founding power of Justice as an institution, such devices insist on producing the naked life of the homo sacer - a life “put out of human jurisdiction” and maintained in relation to it through the logic of exception (Agamben, 2002AGAMBEN, G. Homo sacer: o poder soberano e a vida nua. Belo Horizonte: Ed. UFMG, 2002., p. 90). In this context, the return of institutionalized people to life in the territory is only a first movement whose continuity will depend on the conditions for sustaining deinstitutionalization as a daily process to make the social fabric work.

The experience reported here collected the fragments of their paths in the interstices of these biopolitical and legal-normative arrangements and composed narratives with them to denounce the logic that supports their reproduction. The reconstruction of stories in narratives, the inclusion of the body in the asylum and neighborhood scene, the ethics of the question, the singularization of life, the production of the common as profane and pre-individual and the fabric of the network of looks, sayings and actions then decanted as operating principles of deinstitutionalization in mental health. They are remnants of our narrative paths, when memory insisted on calling for testimony from asylum concentration camps to dismantle mental asylums. They are possible coordinates of a method that plunged into the intensity of the lived to restore to common use an experience of uninterrupted, unstable, open and delicate work, of the fabric of the singular in the collective, against legalized maturity and abandonment.

References

  • AGAMBEN, G. A comunidade que vem Tradução António Guerreiro. Lisboa: Presença, 1993.
  • AGAMBEN, G. Homo sacer: o poder soberano e a vida nua. Belo Horizonte: Ed. UFMG, 2002.
  • AGAMBEN, G. Profanações São Paulo: Boitempo, 2007.
  • ARRIGUCCI JÚNIOR, D. Fragmentos sobre a crônica. In: ARRIGUCCI JÚNIOR, D. Enigma e comentário São Paulo: Companhia das Letras, 1987. p. 51-66.
  • ASSMANN, S. Apresentação. In: AGAMBEN, G. Profanações São Paulo: Boitempo, 2007. p. 7-14.
  • BRAGA, R. Mar. In: BRAGA, R. 200 crônicas escolhidas Rio de Janeiro: Record, 1986. p. 23-24.
  • BENJAMIN, W. O narrador. In: BENJAMIN, W. Magia e técnica, arte e política: ensaios sobre literatura e história da cultura. São Paulo: Brasiliense, 1994. p. 197-221. (Obras escolhidas, v. I).
  • FOUCAULT, M. História da sexualidade I: a vontade de saber. Rio de Janeiro: Graal, 1988.
  • FREUD, S. El malestar en la cultura. In: FREUD, S. Obras completas Buenos Aires: Amorrortu, 2004. v. XXI, p. 57-140.
  • GAGNEBIN, J. M. Lembrar, escrever, esquecer São Paulo: Ed. 34, 2006.
  • HOUAISS, A.; VILLAR, M. Dicionário Houaiss de Língua Portuguesa Rio de Janeiro: Objetiva, 2001.
  • LACAN, J. O tempo lógico e a asserção da certeza antecipada. In: LACAN, J. Escritos Rio de Janeiro: Zahar, 1998. p. 197-213.
  • LACAN, J. Radiofonia. In: LACAN, J. Outros escritos Rio de Janeiro: Zahar, 2003. p. 400-447.
  • PALOMBINI, A. L. Acompanhamento terapêutico: dispositivo clínico-político. Psychê, São Paulo, v. 10, n. 18, p. 115-127, 2006. Disponível em: <Disponível em: https://bit.ly/2MxsOOU >. Acesso em: 4 nov. 2019.
    » https://bit.ly/2MxsOOU
  • PELBART, P. P. Manicômio mental: a outra face da clausura. In: LANCETTI, A. (Org.). Saúde loucura 2. São Paulo: Hucitec, 1997. p. 131-138.
  • ROTELLI, F. A instituição inventada. In: ROTELLI, F.; LEONARDIS, O.; MAURI, D. (Org.). Desinstitucionalização São Paulo: Hucitec, 2001. p. 89-100.
  • ROTELLI, F.; AMARANTE, P. Reforma Psiquiátrica na Itália e no Brasil: aspectos históricos e metodológicos. In: BEZERRA, B; AMARANTE, P. (Org.). Psiquiatria sem hospício: contribuições ao estudo da Reforma Psiquiátrica. Rio de Janeiro: Relume-Dumará, 1992. p. 41-55.

  • 5
    In the narratives shared here, we chose to highlight the characters’ speeches in italics about the deinstitutionalization work experience.
  • 6
    Therapeutic residences are homes for people with a history of long-term hospitalizations in psychiatric hospitals, aiming to promote the reintegration of these people into the community.
  • 7
    Lacan takes a well-known figure from topology, the Moebius strip (1858). It is a ribbon that after a half turn has its ends attached. The transit through this ribbon, so well portrayed by Escher in a 1963 work called Moebius Strip, reveals that, although we can visually conceive an artifact with two sides (the inside and the outside), the experience of its handling puts us in front of a strip that has a single face. This topological figure serves to give an image to relationships between instances that, although at first glance appear to be in discontinuity, are presented in continuity (Lacan, 2003LACAN, J. Radiofonia. In: LACAN, J. Outros escritos. Rio de Janeiro: Zahar, 2003. p. 400-447.).
  • 8
    Let us remember the double meaning that adds the word “common” - comum, in Portuguese: “adjective: 1.relative or belonging to two or more beings or things. 2. that is usual, habitual “(Houaiss, 2001HOUAISS, A.; VILLAR, M. Dicionário Houaiss de Língua Portuguesa. Rio de Janeiro: Objetiva, 2001.).

Publication Dates

  • Publication in this collection
    20 Nov 2020
  • Date of issue
    2020

History

  • Received
    03 Dec 2019
  • Accepted
    30 Mar 2020
Faculdade de Saúde Pública, Universidade de São Paulo. Associação Paulista de Saúde Pública. SP - Brazil
E-mail: saudesoc@usp.br