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Latin-American Mad Studies: Conceptual Frameworks and Research Agenda

Abstract

This article analyzes the emergence of Mad Studies as an investigative tradition that proposes critical theories and alternative methodologies in the production of knowledge from people who have been labeled with psychiatric diagnoses. For Mad Studies, the meanings around Madness express the relationship of forces and the forms of oppression that constitute the field of mental health, therefore, they emphasize the political nature of the research that is developed in this field and sustain a questioning of the claim of objectivity and neutrality of the biomedical model. In this framework, through a review of the academic literature and netnography as a research method, the growing role of the communities that have received mental health care in Latin America to express their narratives in the public sphere is described, positioning themselves as agents of knowledge and political actors. Around these new grammars, Latin American Mad Studies are constituted as a research perspective towards the configuration of other ways of inhabiting madness and articulating their struggles for social emancipation in the contemporary regional scenario.

Keywords:
Mad Studies; Social investigation; Mental health; Latin America.

Resumen

El artículo analiza la emergencia de los Estudios Locos como tradición investigativa que propone teorías críticas y metodologías alternativas en la producción de saberes desde las personas que han sido etiquetadas con diagnósticos psiquiátricos. Para los Estudios Locos, los significados en torno a la locura expresan la relación de fuerzas y las formas de opresión que constituyen el campo de la salud mental, por lo tanto, enfatizan el carácter político de las investigaciones que se desarrollan en este ámbito y sostienen un cuestionamiento a la pretensión de objetividad y neutralidad del modelo biomédico. En este marco, mediante una revisión de la literatura académica y la netnografía como método de investigación, se describe el creciente protagonismo de las comunidades que han recibido atención de salud mental en América Latina para expresar sus narrativas en la esfera pública, situándose como agentes de conocimientos y actores políticos. En torno a estas nuevas gramáticas, los Estudios Locos Latinoamericanos se constituyen como una perspectiva de investigación hacia la configuración de otros modos de habitar la locura y articular sus luchas de emancipación social en el escenario regional contemporáneo.

Palabras claves:
Estudios Locos; Investigación social; Salud mental; América Latina.

Resumo

Este artigo analisa a emergência dos Estudos loucos como uma tradição investigativa que propõe teorias críticas e metodologias alternativas para a produção do conhecimento de pessoas que foram rotuladas com diagnósticos psiquiátricos. Para Estudos loucos, os significados em torno da loucura expressam a relação de forças e as formas de opressão que constituem o campo da saúde mental, portanto, enfatizam o caráter político das pesquisas que se desenvolvem neste campo e sustentam um questionamento da reivindicação de objetividade e neutralidade do modelo biomédico. Nesse quadro, por meio de uma revisão da literatura acadêmica e da netnografia como método de pesquisa, descreve-se o crescente papel das comunidades que receberam atenção em saúde mental na América Latina para elaborar suas experiências no campo acadêmico e expressar suas narrativas em público. esfera, posicionando-se como agentes do conhecimento e atores políticos. Em torno dessas novas gramáticas, propõe-se o surgimento dos Estudos loucos da América Latina como disciplina emergente na configuração de outras formas de habitar a loucura e articular suas lutas pela emancipação social no cenário regional contemporâneo.

Palavras-chave:
Estudos loucos; Investigação social; Saúde mental; América Latina.

Introduction

In Latin America, the field of Mental Health has developed in recent decades based on theoretical discussions and intervention models focused on psychiatric deinstitutionalization. In this regard, critical views have argued that the implementation of public mental health policies from a community approach has contributed to the continuity of the biomedical model and the advancement of the pharmacological paradigm in care practices (CASTILLO-PARADA, 2018CASTILLO-PARADA, T. Subjetividad y autonomía: significados y narrativas sobre la discontinuación de fármacos psiquiátricos. Salud Colectiva, v. 14, n. 3, p. 513-529, 2018. ; CAMPOS, BEZERRA; JORGE, 2020CAMPOS, D.; BEZERRA, I.; JORGE, M. Produção do cuidado em saúde mental: práticas territoriais na rede psicossocial. Trabalho, Educação e Saúde, v. 18, n. 1, e0023167, 2020. ; CEA-MADRID, 2020CEA-MADRID, J. C. Gasto público en prestaciones hospitalarias y extrahospitalarias en el modelo de salud mental comunitaria en Chile. Saúde e Sociedade, v. 29, n. 3, e190893, 2020.; MESSIAS; DE CASTRO; MARTINS, 2020MESSIAS, N.; DE CASTRO, C.; MARTINS, M. Versões de usuários sobre a internação psiquiátrica involuntaria. Polis e Psique, v. 10, n. 1, p. 123 - 143, 2020. ). In correspondence with this trend, biomedical hegemony has been predominant in academic production circuits where psychosocial views have acquired a subordinate status in university training and research programs. Although this situation has been problematized by representatives of the community model, these debates have been limited to professional discussion circles in which the community of users and ex-users of mental health services have not played a central role (CEA- MADRID, 2018).

Faced with this, the first person associative movement, constituted of people with lived experience in the field of Mental Health, has emerged in recent years as a relevant social actor to reconfigure Mental Health as a field of public intervention. People who have been labeled with psychiatric diagnoses in the context of the anti-asylum movement in Brazil have established networks of associativity and participation in the fight for their citizenship rights (NOVAES; BRANDÃO, 2015NOVAES, C.; BRANDÃO, M. A participação política de pessoas com sofrimento mental: a Associação dos Usuários de Serviços de Saúde Mental de Minas Gerais (Asussam-MG). Psicologia em Revista, v. 21, n. 3, p. 513-533, 2015.). In Chile, first person activists have managed to promote various expressions of political participation towards the construction of a social movement for the defense of the right to madness with innovative characteristics in the region (FREDES, 2018FREDES, R. El derecho a la locura en Chile: Construyendo desde los márgenes y en las grietas del sistema. In CEA-MADRID, J. C. Por el derecho a la locura. La reinvención de la salud mental en América Latina, p. 91-110. Santiago: Editorial Proyección , 2018. ; CASTILLO-PARADA, 2021CASTILLO-PARADA, T. Orgullo Loco en Chile: políticas de identidad, luchas simbólicas y acción colectiva en salud mental. Revista Chilena de Antropología, n. 43, p. 131-146, 2021.). In this framework, people who have received mental health care have challenged the uncritical and naturalized acceptance of the biomedical model and reconfigured their role as passive recipients of public policies, positioning themselves as social actors and constructors of reality.

This citizen capacity to make their voices heard and exercise their rights has placed people who have lived through the experience of madness and psychiatrization as creative and active subjects, bearers of a culture and history, as well as producers of knowledge. Under these guidelines, Mad Studies emerge as a research approach that promotes the appropriation of experience, the generation of knowledge and the creation of power in these communities (GORMAN; LEFRANÇOIS, 2017GORMAN, R.; LEFRANÇOIS, B. Mad studies. In COHEN, B. Routledge International Handbook of Critical Mental Health, p. 107-114. London: Routledge, 2017. ). Mad Studies are part of the tradition of the Mad Pride movement that was born in Canada during the 90's with the aim of celebrating and claiming this identity in the public sphere. In this line, Mad Studies constitute a field of production of knowledge and political action that validates and celebrates experiences around madness, presenting a critical look at psychiatric discourse in academic settings (LEFRANÇOIS; MENZIES; REAUME, 2013LEFRANÇOIS, B.; MENZIES, R.; REAUME, G. Mad matters: A critical reader in Canadian Mad Studies. Toronto: Canadian Scholars’ Press, 2013.; RUSSO; SWEENEY, 2016).

In particular, Mad Studies give relevance to the experiences of people who have received psychiatric diagnoses and develop a praxis committed to transforming relations of oppression and exclusion in the field of Mental Health. In this sense, at the regional level, a growing role has been described in the field of civil society and in the occupation of public space by organizations of users and ex-users, considering a greater interest in addressing their meanings about services of Mental Health and their inclusion in research to improve the quality of public services from a rights-based approach and reduce the imbalance of power in care practices (CEA-MADRID, 2019CEA-MADRID, J. C. “Locos por nuestros derechos”: Comunidad, salud mental y ciudadanía en el Chile contemporáneo. Quaderns de Psicologia, v. 21, n. 2, p. e1502, 2019.; RICCI et al., 2020RICCI, E. et al. Revisão sistemática qualitativa sobre avaliações de serviços em saúde mental na perspectiva dos usuários. SMAD. Revista eletrônica saúde mental álcool e drogas, v. 16, n. 2, p. 94-105, 2020.; ROSALES ; ARDILA-GÓMEZ; STOLKINER, 2018ROSALES, M.; ARDILA-GÓMEZ, S.; STOLKINER, A. De usuarios de salud mental a promotores de derechos: los efectos de la participación en una asociación de usuarios de servicios de salud mental en la ciudad de buenos aires. un estudio de caso en el año 2015. Anuario de investigaciones, v. 25, p.117-124, 2018. ; TROYA; BARTLAM; CHEW-GRAHAM, 2018TROYA, M.; BARTLAM, B.; CHEW-GRAHAM, C. Involving the public in health research in Latin America: making the case for mental health. Revista Panamericana de Salud Pública, v. 42, e45, 2018.).

To account Mad Studies as a field under construction in Latin America this article describes the context of emergence and the theoretical references that support this critical project in the region. To do so, recent academic publications that consider the narratives of people who have received psychiatric diagnoses are examined, as well as the expressions of digital activism in the formation of a "mad movement" in our continent. Finally, the approaches and challenges faced by Latin-American Mad Studies as a research perspective in the contemporary scenario are also described.

Mad Studies, Epistemic Injustice and Politics of Knowledge in Mental Health

Various critical traditions have confronted the dominant paradigm in the field of science, denouncing relations of exclusion in the field of knowledge. The emergence of feminist epistemology which emphasizes the importance of the incorporation and participation of women, as well as the gender perspective in the fields of production and validation of knowledge (BLAZQUEZ; FLORES; RÍOS, 2010BLAZQUEZ, N.; FLORES, F.; RÍOS, M. (Coords.). Investigación feminista: epistemología, metodología y representaciones sociales. México DF: UNAM, 2010.) together with the epistemologies of the South which protect the ecology of knowledge and the emergence of new voices and narratives from the global South (DE SOUSA SANTOS, 2009DE SOUSA SANTOS, B. Una epistemología del sur: la reinvención del conocimiento y la emancipación social. México: Siglo XXI, 2009.), among other perspectives, have questioned the structures of epistemic authority in contemporary society.

In this tradition, Mad Studies argues that people who have been labeled with psychiatric diagnoses have been displaced from a leading role in research processes in the field of Mental Health (LEFRANÇOIS; MENZIES; REAUME, 2013LEFRANÇOIS, B.; MENZIES, R.; REAUME, G. Mad matters: A critical reader in Canadian Mad Studies. Toronto: Canadian Scholars’ Press, 2013.). To the extent that Madness has historically been located in places of exclusion, it has been discredited beforehand in the field of knowledge (HUERTAS, 2020HUERTAS, R. Locuras en primera persona. Subjetividades, experiencias, activismos. Madrid: Catarata, 2020.). Thus, the word of the mad person has been rejected from official discourses and expert knowledge, questioning its status as a subject of knowledge production. The above can be understood as a form of epistemic injustice (NEWBIGGING; RIDLEY, 2018NEWBIGGING, K.; RIDLEY, J. Epistemic struggles: The role of advocacy in promoting epistemic justice and rights in mental health. Social Science & Medicine, n. 219, p. 36-44, 2018.). Epistemic injustice occurs when power operates by silencing or discrediting the epistemic condition of a social actor located in a subordinate position, nullifying their ability to transmit knowledge and make sense of their social experiences (BRONCANO, 2020BRONCANO, F. Conocimiento expropiado. Epistemología política en una democracia radical. Madrid: Akal, 2020.; FRIKER, 2017FRICKER, M. Injusticia epistémica. Barcelona: Herder, 2017. ).

In this regard, it has been described that epistemic injustice particularly affects voices that are not heard or are not heeded because they come from groups stigmatized by some stereotype (BRONCANO, 2020BRONCANO, F. Conocimiento expropiado. Epistemología política en una democracia radical. Madrid: Akal, 2020.). This lack of recognition depends on the social position that places certain people in a position of disadvantage and reduced credibility (FRICKER, 2017FRICKER, M. Injusticia epistémica. Barcelona: Herder, 2017. ). In this sense, people who have been labeled with psychiatric diagnoses are particularly vulnerable to epistemic injustice as a consequence of deep-seated social stigma that results in assumptions of irrationality and unreliability to their discourses, such that their knowledge often it is discarded or degraded (NEWBIGGING; RIDLEY, 2018NEWBIGGING, K.; RIDLEY, J. Epistemic struggles: The role of advocacy in promoting epistemic justice and rights in mental health. Social Science & Medicine, n. 219, p. 36-44, 2018.). Accordingly, statements by people who are not in that position are received with greater acceptance than they deserve due to their superiority in the social hierarchy scale (BRONCANO, 2020BRONCANO, F. Conocimiento expropiado. Epistemología política en una democracia radical. Madrid: Akal, 2020.). In this framework, we find the presence of academics, professionals and researchers without lived experience who constitute themselves as legitimized and authorized voices in the field of Mental Health. In turn, another modality of epistemic injustice is expressed in conceptual or resource gaps to understand, interpret, and express situations of injustice (BRONCANO, 2020BRONCANO, F. Conocimiento expropiado. Epistemología política en una democracia radical. Madrid: Akal, 2020.). This refers to the limitations found by people labeled with psychiatric diagnoses to develop categories and singular narratives based on their own experiences.

The way in which this epistemic injustice has been conceptualized by Mad Studies has been through Sanism. Sanism is understood as a system of oppression that is expressed on different levels in our society (POOLE et al., 2012POOLE, J. et al. Sanism, “mental health”, and social work/education: A review and call to action. Intersectionalities: A Global Journal of Social Work Analysis, Research, Polity, and Practice, v.1, n. 1, p. 20-36, 2012.). On one hand, it explains the mechanisms of discrimination and the set of prejudices and stereotypes associated with people who have been labeled with psychiatric diagnoses. On the other hand, it accounts for the forms of institutional violence directed towards this specific group, among which are the practices of abuse, confinement and segregation. Finally, Sanism establishes a structural relationship of domination that supports an epistemological contempt for people who have subjective differences. This is how historically the narratives of mad people have been dismissed, implying multiple forms of annulment and silencing (CHAMBERLIN, 1978CHAMBERLIN, J. On our own: Patient-controlled alternatives to the mental health system. New York: Haworth Pres, 1978.).

Against this, Mad Studies legitimizes the voice of these social actors to confront epistemic oppression and relations of exclusion in the field of knowledge. In terms of political epistemology, Mad Studies establishes a relationship between social position and epistemic position. Thus, it is argued that there would be differences in the production of knowledge between those who share a common experience and develop their investigations from the point of view of madness and those who do not. This epistemological turn has been key to questioning Sanism in areas of knowledge production, placing "the patient's perspective" as a starting point in research processes (CHAMBERLIN, 1978CHAMBERLIN, J. On our own: Patient-controlled alternatives to the mental health system. New York: Haworth Pres, 1978.).

In addition, Mad Studies has promoted horizontal and collaborative practices in knowledge construction processes in order to problematize under what conditions certain research topics are more permissible than others and, in turn, go beyond the institutional frameworks that order and reproduce hierarchies in the internal relationship between researchers and subjects researched (LEFRANÇOIS; BERESFORD; RUSSO, 2016LEFRANÇOIS, B.; BERESFORD, P.; RUSSO, J. Editorial: Destination Mad Studies. Intersectionalities: A Global Journal of Social Work Analysis, Research, Polity, and Practice, v. 5, n. 3, p. 1-10, 2016.). In this way, Mad Studies has promoted forms of research aimed at making visible the multiple forms of sanist oppression that are part of the sociocultural framework, daily life and common sense. Under these guidelines, Mad Studies raises the importance of developing methodological designs that help build bridges of collaboration between academia and activism.

These instances of collaboration have favored the configuration of initiatives that are born from the "mad movement" and have had a certain level of repercussion in the academy. However, Mad Studies has had to cope with practices that place Madness as an object of study, under the tutelage of health institutions or archival documents, in the historiographical tradition. Therefore, Mad Studies has combated the barriers that place certain knowledge in conditions of illegitimacy and dispute academic spaces so that mad people are considered as subjects of knowledge (LEFRANÇOIS; BERESFORD; RUSSO, 2016LEFRANÇOIS, B.; BERESFORD, P.; RUSSO, J. Editorial: Destination Mad Studies. Intersectionalities: A Global Journal of Social Work Analysis, Research, Polity, and Practice, v. 5, n. 3, p. 1-10, 2016.).

Along with this, beyond the university campuses, Mad Studies has contributed to systematizing shared knowledge of action strategies of the "mad movement", as well as rescuing memories of resistance against psychiatric violence (GORMAN; LEFRANÇOIS, 2017GORMAN, R.; LEFRANÇOIS, B. Mad studies. In COHEN, B. Routledge International Handbook of Critical Mental Health, p. 107-114. London: Routledge, 2017. ). From this perspective, Mad Studies protects the knowledge that is inscribed in the biographies of people who have been labeled with psychiatric diagnoses, the actions of denunciation and protest that they promote, as well as the strategies of defense and promotion of rights that they lead. Therefore, Mad Studies accounts for forms of knowledge that arise from "mad activism", giving priority to an epistemic action that associates the value of knowledge and its usefulness in the context of collective struggles. In this way, the knowledge that is built from Mad Studies is situated, fragmented and impartial without pretense of totality that arises with the aim of taking sides and establishing certain positions in favor of political action in the field of madness. (LEFRANÇOIS; MENZIES; REAUME, 2013LEFRANÇOIS, B.; MENZIES, R.; REAUME, G. Mad matters: A critical reader in Canadian Mad Studies. Toronto: Canadian Scholars’ Press, 2013.).

In conclusion, Mad Studies not only implies new forms of knowledge production, but also new forms of research with people who have been labeled with psychiatric diagnoses and their forms of organization towards the constitution of a collective historical subject. The foregoing has contributed to democratizing social structures in the production of knowledge, giving space and relevance to a plurality of voices around madness. Along this path, subaltern political identities and practices have taken place, silenced life experiences have gained prominence, and forms of alternative knowledge have gained relevance that are developed beyond mental health services (CEA-MADRID, 2019CEA-MADRID, J. C. “Locos por nuestros derechos”: Comunidad, salud mental y ciudadanía en el Chile contemporáneo. Quaderns de Psicologia, v. 21, n. 2, p. e1502, 2019.).

In order to examine the place of Mad Studies in our continent the methodological orientations that allow reconstructing a research agenda that prioritizes the perspective of people who have received mental health care in academic publications are described below, as well as elaborating a mapping of the collective struggles of the "mad movement” in the Latin American cyberspace.

Methodology

To approach the field under construction of Mad Studies in Latin America, a bibliographic review and a netnographic study were carried out. To investigate the academic production on the perspectives of Mental Health users and ex-users in the region, the VHL Regional Portal reviewed the academic literature in the LILACS, BDENF - Nursing databases, IBECS, Index Psychology - Journals and LIPECS. As well as selection criteria, open access articles in Portuguese or Spanish were used, published in the periods between 2015 and 2020. 30 academic articles were selected, therefore, the relevance of the texts found was taken into account, safeguarding their conceptual and methodological contribution to understanding the study of the phenomenon. Research that contemplated the participation of family members and mental health teams was excluded giving priority to theoretical or qualitative research that considered meanings and narratives of people who have received mental health care.

On the other hand, to investigate the organizational frameworks of people with lived experience in mental health, netnography, an ethnographic research tool, was used to observe what occurs in online contexts and virtual spaces (DEL FRESNO, 2011DEL FRESNO, M. Netnografía. Investigación, análisis e intervención social online. Barcelona: Editorial UOC, 2011.; GEBERA, 2008GEBERA, O. La netnografía: un método de investigación en internet. Educar, n. 42, p. 81-93, 2008. ). In this regard, social media posts (Facebook and Instagram) of the collectives Autogestión Libre-mente and Locos por nuestros derechos (Chile), Orgullo Loco Mx and SinColectivo (Mexico), Orgullo Loco Buenos Aires (Argentina) and Redesfera Latinoamericana de la Diversidad Psicosocial (regional level) were reviewed, specifically the activities organized under the slogan "Mad Pride" between 2015 and 2020.

In this way, the networks of knowledge production, academic research and digital activism surrounding Mental Health in Latin America has been determined as a field of study. In this regard, the growing importance of the use of information and communication technologies has been addressed, as well as the use of digital platforms in the configuration of exchange and collaboration networks between virtual communities of first-person activism in the region.

Mad Studies from Latin America: A Model to Build

Mental health in Latin America is a complex and plural reality. The multiplicity of actors and the diversity of approaches in each of the countries of the region open and close possibilities in the field of knowledge. This variety of records and spaces has made it possible to challenge the biomedical hegemony in the processes of research and academic production in our continent. In South America specifically, a growing number of publications have described the relevance of observing the Mental Health system from the perspective of people who have received psychiatric diagnoses (AZAMBUJA; FERREIRA, 2019AZAMBUJA, M.; FERREIRA, J. Do Território à Multiterritorialidade entre Usuários, Trabalhadores e Pesquisadores em Saúde Mental. Psicologia: Ciência e Profissão, v. 39, n. spe2, e226200, 2019.; MESSIAS; DE CASTRO; MARTINS, 2020MESSIAS, N.; DE CASTRO, C.; MARTINS, M. Versões de usuários sobre a internação psiquiátrica involuntaria. Polis e Psique, v. 10, n. 1, p. 123 - 143, 2020. ; NASCIMENTO; BRÊDA; ALBUQUERQUE, 2015NASCIMENTO, Y.; BRÊDA, M.; ALBUQUERQUE, M.O adoecimento mental: percepções sobre a identidade da pessoa que sofre. Interface - Comunicação, Saúde, Educação, v. 19, n. 54, p. 479-490, 2015. ; VENTURA, DE MORAES; JORGE, 2017VENTURA, C; DE MORAES, V.; JORGE, M. (2017). Direitos humanos de pessoas com transtornos mentais: perspectiva de profissionais e clientes. Revista Enfermagem UERJ, v. 25, e4344, 2017. ; VIEIRA, et al., 2018VIEIRA, et al. Concepções de usuários de um CAPS sobre o tratamento e inclusão. Psicologia & Sociedade, v. 30, e187474, 2018. ).

Around these approximations, Mad Studies allow resignifying what can be known and what should be known in the field of Mental Health in an inside-outside dynamic of academic spaces. By placing the experiences of people who have attended mental health services at the center, Mad Studies addresses structural concealment and systemic forgetting of relevant issues for this group. In this way, Mad Studies constitute an incipient perspective that has begun to have a place in academic discussion spaces and in public debates. Its characteristics and current lines of development are described below.

New Conceptions of Citizenship Rights and Reconfigurations of Social Participation in Mental Health

This section refers mainly to academic publications that analyze the scope of the dynamics of social participation and construction of citizenship of the community of users and ex-users of mental health services in Latin America. In relation to the participation of these communities in mental health programs and policies, the persistence of prejudiced beliefs about the ability of this group to participate has been highlighted, supporting the need to address the social barriers that hinder participation processes (YOMA, 2019YOMA, S. Participación de las personas usuarias en políticas públicas de salud mental: una revisión integrativa. Ciência & Saúde Coletiva , v. 24, n. 7, p. 2499-2512, 2019. ).

In this context, a series of investigations have described the importance of the role of community of users in mental health promotion actions, as well as the relevance of including their perceptions and meanings in the evaluation of services. In this regard, the role of users in the construction of their therapeutic projects, the importance of community support and the establishment of links in the recovery process, participation in peer groups to promote social inclusion and their collaboration has been highlighted for the construction of scientific knowledge (ARDILA-GÓMEZ, et al., 2016ARDILA-GÓMEZ, S. et al. El desafío de la inclusión en salud mental: análisis de un centro comunitario y su trabajo sobre los vínculos sociales. Salud colectiva, v. 12, n. 2, p. 265-278, 2016.; SILVEIRA et al., 2016SILVEIRA et al. O outro lado da porta giratória: apoio comunitário e saúde mental. Psicologia em Estudo, v. 21, n. 2, p. 325-335, 2016.; VASCONCELOS et al., 2016VASCONCELOS, M. et al. Projeto terapêutico em Saúde Mental: práticas e processos nas dimensões constituintes da atenção psicossocial. Interface - Comunicação, Saúde, Educação, v. 20, n. 57, p. 313-323, 2016. ; SATIZABAL; ORTIZ, 2019SATIZABAL, M.; ORTIZ, D. Mentalmente Sanos: Una experiencia con enfoque comunitario. Revista de Salud Pública, v. 21, n. 1, p. 122-127, 2019.; ZARAZA; HERNÁNDEZ, 2016ZARAZA, D.; HERNÁNDEZ, D. El valor de los apoyos para el bienestar subjetivo al vivir con esquizofrenia. Index de Enfermería, v. 25, n. 3, p. 141-145, 2016. ; OTANARI; RODRIGUEZ DEL BARRIO, 2020OTANARI, T.; RODRIGUEZ DEL BARRIO, L. O comitê cidadão e o trajeto participativo da pesquisa GAM. Polis e Psique, n.10, v. 2, p. 9-32, 2020.).

On the other hand, the ability of the user community to generate narratives that allow attributing meaning to their experiences and aid modalities has been described (ARRUDA; MODESTO; DIAS JÚNIOR, 2018ARRUDA, A.; MODESTO, A.; DIAS JÚNIOR, S. Trajetória em narrativas: loucuras e a cidade de Belo Horizonte, Brasil. Ciência & Saúde Coletiva, v. 23, n. 4, p. 1201-1210, 2018.). In this sense, collaborative research projects and participatory intervention have given a greater understanding of the contextual determinants of Mental Health. In this framework, various studies have been published about Autonomous Medication Management (GAM) in Brazil that address the narratives of mental health users about pharmacological treatment (COUGO, 2018COUGO, V. A Estratégia Gestão Autônoma da Medicação e a Inserção da (A)normalidade no Discurso da Cidadania. Psicologia: Ciência e Profissão , v. 38, n. 4, p. 622-635, 2018.; FERRER; PALOMBINI; AZAMBUJA, 2020FERRER, A.; PALOMBINI, A.; AZAMBUJA, M. Gestão Autônoma da Medicação: um olhar sobre dez anos de produção participativa em saúde mental a partir do Brasil. Polis e Psique, v. 10, n. 2, p. 1-8, 2020.; FERREIRA; FEITOSA; AMORIM, 2020FERREIRA, I.; FEITOSA, C.; AMORIM, A. Gestão autônoma de medicação (GAM) como dispositivo grupal: uma experiência de pesquisa-intervenção. Polis e Psique, v. 10, n. 2, p. 205-226, 2020.; PAZOS; SADE; MACERATA, 2019PASSOS, E.; SADE, C.; MACERATA, I. Gestão Autônoma da Medicação: inovações metodológicas no campo da saúde pública. Saúde e Sociedade, v. 28, n. 4, p. 6-13, 2019.; ROSA, et al., 2020ROSA, E. et al. Gestão autônoma da medicação: estratégia territorial de cogestão no cuidado. Polis e Psique, v. 10, n. 2, p. 76-98, 2020.; SENNA; AZAMBUJA, 2019SENNA, L.; AZAMBUJA, M. Gestão autônoma da medicação: saberes e visibilidades de usuários de saúde mental em universidades no interior do RS. Polis e Psique, v. 9, n. 2, p.67-86, 2019.; ZANCHET; PALOMBINI, 2020ZANCHET, L.; PALOMBINI, A. A noção de experiência na GAM brasileira: relações raciais e subalternidades. Polis e Psique, v.10, n. 2, p. 33-52, 2020.).

In various Brazilian cities, GAM initiatives have led to the generation of spaces for dialogue on the use of psychotropic drugs, facilitating the participation and effective involvement of those affected in decision-making in relation to their care process (PALOMBINI et al., 2020bPALOMBINI, A. et al. Autonomia e Exercício de Direitos na Experiência da Gestão Autônoma da Medicação. Psicologia: Ciência e Profissão , n. 40, e190411, 2020b. ). In these initiatives, shared management guidelines for pharmacological treatment are established, supporting spaces for the exchange of experiences on medication by the actors involved (MARTINS-GONÇALVES; ONOCKO-CAMPOS, 2017MARTINS GONÇALVES, L.; ONOCKO CAMPOS, R. Narrativas de usuários de saúde mental em uma experiência de gestão autônoma de medicação. Cadernos de Saúde Pública, 33(11), e00166216, 2017. ; PAZOS; SADE; MACERATA, 2019PASSOS, E.; SADE, C.; MACERATA, I. Gestão Autônoma da Medicação: inovações metodológicas no campo da saúde pública. Saúde e Sociedade, v. 28, n. 4, p. 6-13, 2019.). Therefore, it has been described that the user is the protagonist and co-responsible for the decisions related to their treatment, contributing to their empowerment and the exercise of rights (COUGO; AZAMBUJA, 2018COUGO, V.; AZAMBUJA, M. A Estratégia Gestão Autônoma da Medicação e a Inserção da (A)normalidade no Discurso da Cidadania. Psicologia: Ciência e Profissão , v. 38, n. 4, p. 622-635, 2018. ; PALOMBINI, et al., 2020aPALOMBINI, A. et al. Produção de grupalidade e exercícios de autonomia na GAM: a experiência do Rio Grande do Sul. Polis e Psique, n.10, v. 2, p.53-75, 2020a.; FAVERO, et al. al., 2019FAVERO, C. et al. Grupo de gestão autónoma da medicação num centro de atenção psicossocial: experiência de usuários. Revista de Enfermagem Referência, v. serIV, n. 21, p. 91-100, 2019. ).

The instances of GAM have allowed to expand the spaces of negotiation and democratic inclusion of users in their treatment, however, a reality that has not been addressed in depth refers to the experiences of rejection and discontinuation of psychiatric drugs of people who abandoned mental health services (CASTILLO-PARADA, 2018CASTILLO-PARADA, T. Subjetividad y autonomía: significados y narrativas sobre la discontinuación de fármacos psiquiátricos. Salud Colectiva, v. 14, n. 3, p. 513-529, 2018. ). However, the importance of considering the possibilities of exercising citizenship and building autonomy beyond the mental health system by occupying the city, access to justice, work, art and culture has been described as well as the development of activism and political participation in the social fabric (ARDILA-GÓMEZ, et al., 2019ARDILA-GÓMEZ, S. et al. The mental health users’ movement in Argentina from the perspective of Latin American Collective Health. Global Public Health, v. 14, n. 6-7, p. 1008-1019, 2019. ; AMARANTE; TORRE, 2019AMARANTE, P.; TORRE, E. “¡De volta à cidade, sr. cidadão!” - reforma psiquiátrica e participação social: do isolamento institucional ao movimento antimanicomial. Revista de Administração Pública, v. 52, n. 6, p. 1090-1107, 2018. ; AZAMBUJA; FERREIRA, 2019AZAMBUJA, M.; FERREIRA, J. Do Território à Multiterritorialidade entre Usuários, Trabalhadores e Pesquisadores em Saúde Mental. Psicologia: Ciência e Profissão, v. 39, n. spe2, e226200, 2019.; BERNARDES; VENTURA, 2017BERNARDES, E.; VENTURA, C. A sociologia das ausências como referencial teórico para a pesquisa em enfermagem psiquiátrica e em saúde mental. Texto & Contexto - Enfermagem, v. 26, n. 4, e00720017, 2017. ; SANTOS; JOCA; SOUZA, 2016SANTOS, E.; Joca, E.; Souza, A. Teatro do oprimido em saúde mental: participação social com arte. Interface - Comunicação, Saúde, Educação, v. 20, n. 58, p. 637-647, 2016. ; PORTUGAL; MEZZA; NUNES, 2018PORTUGAL, C.; MEZZA, M.; NUNES, M. A clínica entre parênteses: reflexões sobre o papel da arte e da militância na vida de usuários de saúde mental. Physis: Revista de Saúde Coletiva, v. 28, n. 2, e280211, 2018.). Along this path, new conceptions have begun to develop around madness and the right to difference, grammars of which are examined below.

Occupation of Public Spaces from First Person Activism

This section addresses the leading role of a new social actor in the region: the first person associative movement in its various expressions of digital activism and demonstrations in the public space. In this field we have the organizational work of groups of users and ex-users whose experiences have not yet fully transitioned to academic spaces because they are developed outside those environments. However, the work of these communities has had an important presence in cyberspace and from there have generated incipient forms of articulation with the university world. In various countries of the region, community organizations have gained momentum that promote the social participation of users and ex-users of mental health services, achieving greater or lesser levels of institutional autonomy. These initiatives have mainly had expression at the local level but have also developed articulations at the regional level, sustaining gathering spaces and transnational collaboration networks increasingly in recent years.

In Latin America, the first person associative movement has been oriented towards the constitution of alternative discourses, the defense of rights and the articulation of resistance practices. Within this framework are the forms of occupation of public spaces with collective demonstrations. This expression was inaugurated in Santiago of Chile in 2015 with the first Protest Against Electroshock in May and the first "Mad Pride" march in November. This cycle of activities has been maintained over time, achieving greater followers and increasing its capacity to convoke each year. Later in 2019, Mad Pride is celebrated for the first time in Buenos Aires during the month of May and in Mexico City during the month of July. These initiatives have involved the preparation of a presentation manifesto, creative slogans, the creation of web pages and conversations open to the community reaching wide dissemination on social networks. In this way, these actions have made it possible to situate madness in the field of active citizenship based on expressions of digital activism and creative forms of collective mobilization in the public sphere.

On the other hand, the scope of digital technology has contributed to the formation of the “Redesfera Latinoamericana de la Diversidad Psicosocial” (Latin American Network of Psychosocial Diversity) between the months of May and December of the year 2018. This organization brings together people from ten countries in the region, establishing itself as a space of pioneer organization in the continent in defense of the right to their own voice and capacity for self-definition of people who have been labeled with psychiatric diagnoses. This organization, also called “Locura Latina” (Latin Madness), in its “Declaration of Lima” underlines a framework for valuing and recognizing the identities that make up the field of psychosocial diversity (mad folks, users, ex-users, people with psychosocial disabilities and survivors of psychiatry), in the perspective of imagining and projecting collective actions for the defense of rights that account for plurality. The “Redesfera Latinoamericana de la Diversidad Psicosocial” based on the continuous elaboration of infographics, campaigns, declarations, the celebration of the “Orgullo Loco Latinoamericano” (Latin American Mad Pride) (June 2020) and the organization of two cycles of virtual seminars (June-December 2019 and July-December 2020), has favored public response repertoires and alternative ways of taking the floor in virtual spaces

In this way, the Latin America the "Mad Movement" in its heterogeneous manifestations of occupation in the public sphere has contributed to intervene in the dominant representations and imaginaries surrounding madness, as well as to make known to society as a whole the diverse identities that make up the field of mental health. In this sense, the first person associative has disputed the symbolic aspects that have placed madness and psychosocial diversity in a place of exclusion, confronting the traditional categories of "mental illness" and "mental disability" predominant in the region.

Ultimately, the initiatives that are emerging under the principle of first person activism propose a series of propositional actions and areas of development that enrich the regional panorama of mental health. In turn, the formation of these organizational frameworks expresses the opening of a new cycle of collective articulation around diversity in the field of subjectivity in Latin America.

Conclusions

Mad Studies have generated various initiatives of social action and theorization to make visible the collective struggles of people who have received psychiatric diagnoses and promote areas of recognition of madness in the public sphere and in academic spaces (LEFRANÇOIS; MENZIES; REAUME, 2013LEFRANÇOIS, B.; MENZIES, R.; REAUME, G. Mad matters: A critical reader in Canadian Mad Studies. Toronto: Canadian Scholars’ Press, 2013.). In Latin America, the participation of the users and ex-users community in research programs and the active role of the first person associative movement have laid the foundations for the emergence of Mad Studies in this territory that is closer to praxis than to academic writing. Specifically, Mad Studies has moved from a position of objects of study to constitute themselves as subjects of enunciation. Although people with lived experience have begun to be part of critical initiatives towards the dominant forms of knowledge production in mental health, limitations for directing research projects and speaking on their own behalf on university campuses are still observed, elements that have characterized Mad Studies in Canada and the United Kingdom (LEFRANÇOIS; BERESFORD; RUSSO, 2016LEFRANÇOIS, B.; BERESFORD, P.; RUSSO, J. Editorial: Destination Mad Studies. Intersectionalities: A Global Journal of Social Work Analysis, Research, Polity, and Practice, v. 5, n. 3, p. 1-10, 2016.; LEFRANÇOIS; MENZIES; REAUME, 2013LEFRANÇOIS, B.; MENZIES, R.; REAUME, G. Mad matters: A critical reader in Canadian Mad Studies. Toronto: Canadian Scholars’ Press, 2013.).

However, Mad Studies in Latin America involves a qualitative leap with respect to critical perspectives towards the biomedical model that have been present in community mental health as a traditional field of study and intervention, to the extent that they have managed to involve the voices and narratives of madness in the practices of research and political action. In this sense, Mad Studies in our continent rescues the processes of democratization in decision-making and the distribution of power in the anti-asylum struggle to favor the deployment of the independence and autonomy of the first person associative movement by emphasizing its leading participation in this area (CEA-MADRID, 2018CEA-MADRID, J. C. Por el derecho a la locura. La reinvención de la salud mental en América Latina. Santiago: Editorial Proyección, 2018. ; YOMA, 2019YOMA, S. Participación de las personas usuarias en políticas públicas de salud mental: una revisión integrativa. Ciência & Saúde Coletiva , v. 24, n. 7, p. 2499-2512, 2019. ).

In this way, although Mad Studies has its origin in the Global North, it is being reinvented as a social theory and critical methodology in accordance with the social struggles that are currently underway in our continent. This initiative has become relevant in knowledge production environments, managing to articulate the dissemination of new knowledge towards madness that arises from extracurricular academic spaces. Thus, Mad Studies has made it possible for academic spaces to approach an associative movement that emerges from the borders of the mental health system, contributing to the configuration of new research and activism scenarios outside and inside the academy. For this, the emergence of insurgent subjectivities and the circulation of difference in public spaces have been fundamental (MAINIERI PAULON, 2017MAINIERI PAULON, S. Quando a cidade “escuta vozes”: o que a democracia tem a aprender com a loucura. Interface - Comunicação, Saúde, Educação, v. 21, n. 63, p. 775-786, 2017.; CASTILLO-PARADA, 2021CASTILLO-PARADA, T. Orgullo Loco en Chile: políticas de identidad, luchas simbólicas y acción colectiva en salud mental. Revista Chilena de Antropología, n. 43, p. 131-146, 2021.).

Nonetheless, the incipient development of Latin-American Mad Studies provides provisions to support a conceptual framework and a research agenda that articulates theories and struggles from the organizational dynamics that constitutes it. In this framework, Latin-American Mad Studies represent a questioning of the mechanical reproduction of models and theories that support the biomedical model in academic settings without links to social struggles. For this reason, the involvement of university educational programs with the collective actions of the "mad movement" constitute an instrument of reflection for those who believe that academic practice can no longer be enclosed within the walls of universities, but rather become a tool to stimulate and strengthen citizen initiatives in emancipatory terms.

Additionally, Latin-American Mad Studies contribute to developing strategies of resistance in the academic field against the institutional networks that block and paralyze critical discourse. In contrast, Latin-American Mad Studies allow us to ask ourselves: what do we investigate and for whom do we investigate in mental health? And who is the subject of the investigation? Evidencing the need to consider the presence of people with lived experience as co-investigators and also capable of promoting self-investigation processes (HERAS; ACOSTA; POZO, 2021HERAS, A.; ACOSTA, M, & POZZO, M. I. Investigación en colaboración en el campo de la salud mental desde una perspectiva de derechos. Reflexiones sobre método, teoría y enfoque epistémico. EMPIRIA. Revista de Metodología de las Ciencias Sociales, n. 49, p. 141-161, 2021.). With these questions, Mad Studies intends to rescue the value and use of knowledge in relation to the common good and social justice, as well as to update the commitment and involvement of academic activity with collective struggles.

Finally, although it has been suggested in other latitudes that Mad Studies are inseparable from, and even emerge from, the struggles of the "mad movement", it has also been described that academic perspectives have begun to lag behind political and scientific practices. They have even separated themselves from the struggles that they should accompany (BERESFORD, 2020BERESFORD, Peter. ‘Mad’, Mad studies and advancing inclusive resistance. Disability & Society, v. 35, n. 8, p. 1337-1342, 2020.). In this sense, it is possible to emphasize the importance that Latin-American Mad Studies attend in the academic field and the political actions of the "mad movement" in the public sphere. For this, Latin-American Mad Studies can reflect the wide and diverse mosaic of social and political identities in the field of mental health in our continent, considering the different scales and visions, the dynamics and conflicts that constitute them in the various possible scenarios.

In short, Latin-American Mad Studies, unlike established disciplines that share authorities, standards, methods and defined practices, represents a laboratory for collective experimentation. The plural voices of the "mad movement" ratify this perspective by generating other knowledge and narratives, not only a different way of appropriating and distributing knowledge, but also new ways of producing it that are updated in their processes of deliberation, debate and social transformation. Under these guidelines, Latin-American Mad Studies contributes by challenging biomedical hegemony and reworking new grammars of academic rigor and political commitment in contemporary mental health.

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Publication Dates

  • Publication in this collection
    03 Mar 2023
  • Date of issue
    2022

History

  • Received
    10 Sept 2021
  • Reviewed
    12 Dec 2021
  • Accepted
    05 Jan 2022
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