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Socio-community inclusion and collective occupations: Dialogues between the institutional world and that of organizations of people with psychosocial disabilities

Abstract

The article analyzes socio-community inclusion practices of groups of people with psychosocial disabilities, generated in doing and feeling in their collective occupations, from the dialogues that take place with social institutions. A qualitative methodology was used, with a critical approach. The information was collected through discussion groups, which made it possible to collect speeches from the participants of two groups of people with mental disabilities, corresponding to the communes of Penco and Concepción, in the Biobío Region (Chile); discourses that were coded, analyzed, categorized and interpreted. Among the most relevant results obtained, differences and tensions are evident in the ways of understanding and proceeding towards inclusion, since institutions tend to maintain hierarchical relationships, while groups tend to have more democratic and participatory practices. Regarding the conclusions, it is possible to visualize that the human rights of people with mental disabilities are materialized in a field of collective occupations, daily actions in everyday contexts, and social conflict.

Keywords:
Activities of Daily Living; Social Inclusion; Occupational Therapy; Intellectual Disability

Resumen

El artículo analiza, prácticas de inclusión socio comunitaria, de agrupaciones de personas con discapacidad psicosocial, generadas en el hacer y sentir en sus ocupaciones colectivas, a partir de los diálogos que se producen con las instituciones sociales. Se empleó una metodología cualitativa, con enfoque crítico. La información fue recolectada mediante grupos de discusión, lo que permitió recoger discursos de los participantes de dos agrupaciones de personas con discapacidad psicosocial, correspondientes a las comunas de Penco y Concepción, de la Región del Biobío (Chile); discursos que fueron codificados, analizados, categorizados e interpretados. Entre los resultados más relevantes obtenidos, se evidencian diferencias y tensiones en las formas de comprender y proceder hacia la inclusión, pues las instituciones tienden a mantener relaciones jerárquicas, mientras que las agrupaciones propenden a prácticas más democráticas y participativas. Con respecto a las conclusiones, es posible visualizar que los derechos humanos de las personas con discapacidad psicosocial se materializan en un campo de ocupaciones colectivas, de acciones diarias en contextos cotidianos y de conflicto social.

Palabras-clave:
Actividades Cotidianas; Inclusión Social; Terapia Ocupacional; Discapacidad Intelectual

Introduction

Social understandings around psychosocial disability, traditionally and in a majority way, have been commanded by the medical sciences, enunciating a reified individual, away from the collective doing of the human being (Schliebener, 2020Schliebener, M. T. (2020). La ocupación como objeto y herramienta: ¿cuándo la ocupación está viva? Cadernos Brasileiros de Terapia Ocupacional, 28(3), 1051-1060. https://doi.org/10.4322/2526-8910.ctoARF2043.
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) and generating limitations and restrictions on the rights of the people who live it, a product of prejudices and stigmas of society (Cárcamo Guzmán et al., 2019Cárcamo Guzmán, K., Cofré Lira, I., Flores Oyarzo, G., Lagos Arriagada, D., Oñate Vidal, N., & Grandón Fernández, P. (2019). Atención en salud mental de las personas con diagnóstico psiquiátrico grave y su recuperación. Psicoperspectivas, 18(2), 1-11. http://dx.doi.org/10.5027/psicoperspectivas-vol18-issue2-fulltext-1582.
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). In this context, opting for a more political and social perspective will enable us to understand people with disabilities, from their uniqueness, promoting access and opportunities for all people through accompaniment in the identification of their place as citizens, in the strengthening of their voice (Díaz Velázquez, 2009Díaz Velázquez, E. (2009). Reflexiones epistemológicas para una sociología de la discapacidad. Intersticios, 3(2), 85-99.; Braveman & Bass-Haugen, 2009Braveman, B., & Bass-Haugen, J. D. (2009). Social justice and health disparities: an evolving discourse in occupational therapy research and intervention. The American Journal of Occupational Therapy, 63(1), 7-12. http://dx.doi.org/10.5014/ajot.63.1.7.
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) and in the discovery of basic milestones, such as solidarity, participation, and cohesion (Pino & Ceballos, 2015Pino, M. J., & Ceballos, C. M. (2015). Terapia ocupacional comunitaria y rehabilitación basada en la comunidad: hacia una inclusión sociocomunitaria. Revista Chilena de Terapia Ocupacional, 15(2), 1-15. http://dx.doi.org/10.5354/0719-5346.2015.38167.
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) This is because, from a social perspective, it is impossible to separate the individuals from social reality, shaping their identity in a process of social construction (Pichon-Rivière & Pampliega de Quiroga, 1998Pichon-Rivière, E., & Pampliega de Quiroga, A. (1998). Psicología de la vida cotidiana. Buenos Aires: Nueva Visión.). Social construction, in which it is essential to understand that every individual will have characteristics that only that context can grant, therefore, the transversality of the social space in subjection must be recognized as a generator of individuals.

The process of forming groups contains a series of collective actions that give their members perceptions, identities, representations, and legitimacy, which favors commitment to achieving shared goals (Gutiérrez et al., 2016Gutiérrez, P., Moya, V. R., Saa, A. J., Yañez, H. N., & Campos, J. (2016). Subjetividad en agrupaciones de personas en situación de discapacidad: explorando la dualidad sujeción-agencia y la visión de discapacidad desde la propia vivencia. Revista Chilena de Terapia Ocupacional, 16(1), 147-158. http://dx.doi.org/10.5354/0719-5346.2016.41951.
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). This group cohesion builds links of members in the action to achieve the right to mental health, to resolve exclusion, and the psychosocial discomfort it generates.

This search for well-being does not focus only on psychological aspects, but also on the change of social relations, with the appropriation of daily experiences by its participants (Núñez et al., 2019Núñez, C. M. V., Hermosilla, A., Sepulveda, S., Riffo, M. R., & Martinez, C. R. (2019). Ocupación colectiva como medio de superación del Apartheid Ocupacional: el caso de la lucha por el derecho a la salud de la Agrupación Mama Cultiva. Cadernos Brasileiros de Terapia Ocupacional, 27(1), 4-16.).

Thus, from the social and community perspective in occupational therapy, we pay attention to the discourses of groups of people with psychosocial disabilities, the collective occupations of their socio-community inclusion, and the struggle for the vindication of their rights.

We propose a methodology that there is a balance of joints, referring to the interpenetration, communication, and dialogue between the community and the institutional world.

In this interpretive framework, the world of life can be considered as a concept that has an internal dynamic, which would tell us about an interpretive process, actions, perspectives, and representations linked to the collective social experience (Astrain, 2006Astrain, R. S. (2006). El mundo de la vida y la fenomenología sociológica de Schütz apuntes para una filosofía de la experiencia. Hermenéutica Intercultural. Revista de Filosofía, (15), 167-199.).

For this reason, the socio-community inclusion model proposes greater networking of professionals and rehabilitation teams, and includes the active participation of people with disabilities, from their subjectivities, favoring integrating experiences between community and institutional environments (Pino & Ceballos, 2015Pino, M. J., & Ceballos, C. M. (2015). Terapia ocupacional comunitaria y rehabilitación basada en la comunidad: hacia una inclusión sociocomunitaria. Revista Chilena de Terapia Ocupacional, 15(2), 1-15. http://dx.doi.org/10.5354/0719-5346.2015.38167.
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). In this way, we propose to situate social practices towards the construction of community groups of people with psychosocial disabilities, where relationships of trust and cooperation are established, a path that promotes articulation with mental health institutions without losing their autonomy (Castillo Parada, 2018Castillo Parada, T. (2018). Subjetividad y autonomía: significados y narrativas sobre la discontinuación de fármacos psiquiátricos. Salud Colectiva, 14(3), 513-528. http://dx.doi.org/10.18294/sc.2018.1861.
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). Social claims value the joint action of its participants, as a collective network of psychosocial support.

In this context, occupational therapy proposes that the group activities of people with psychosocial disabilities and their families constitute a collective occupation that is directed toward community inclusion as a right, and that represents a daily scenario of manifestation of identity belonging (Quiroga & Reyes, 2019Quiroga, D. M. O., & Reyes, M. S. (2019). Terapia ocupacional en comunidad: complejidades, acciones y contextos. Cadernos Brasileiros de Terapia Ocupacional, 27(1), 197-207. http://dx.doi.org/10.4322/2526-8910.ctoRE1715.
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).

This collective view of occupation aims to overcome the dominant approach in the discipline, which has traditionally had a post-positivist and monocultural character (Galheigo, 2012Galheigo, S. M. (2012). Perspectiva crítica y compleja de terapia ocupacional: actividad, cotidiano, diversidad, justicia social y compromiso ético-político. TOG (A Coruña), 9(5), 176-189.), a paradigm that is still rooted in the global north, and which proposes occupations as external to the subject, individual and separated from social contexts (Wilcock 1998Wilcock, A. (1998). An occupational perspective of health. Nueva Jersey: SLACK Incorporated., as cited in Tolvett, 2017Tolvett, M. P. (2017). Acerca de sentido de comunidad, ocupaciones colectivas y bienestar/malestar psicosocial: con jóvenes transgresores de territorios populares (Tesis doctoral). Universidad de VIC, España.).

In contrast to the post-positivist paradigm in occupational therapy, the social perspective of occupation emerges, which considers it as a diverse set of concepts, within the framework of a sociohistorical context that guides the knowledge that is produced in the practice of occupational therapy (Morrison et al., 2011Morrison, R., Olivares, D., & Vidal, D. (2011). La filosofía de la ocupación humana y el paradigma social de la ocupación. Algunas reflexiones y propuestas sobre epistemologías actuales en terapia ocupacional y ciencias de la ocupación. Revista Chilena de Terapia Ocupacional, 11(2), 102-119. http://dx.doi.org/10.5354/0719-5346.2011.17785.
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). In this way, the social approach tries to situate the occupation as a multidimensional and complex construction (Morin, 1999Morin, E. (1999). Los siete saberes necesarios para la educación del futuro. París: UNESCO.), understood as a collective expression of culture, history, and its economic and material aspects, given in concrete conditions of existence, which are manifested in ways of life produced in the daily life of communities (Tolvett, 2015Tolvett, M. P. (2015) Sentido de comunidad y ocupaciones colectivas. In Actas del 1º Congreso Chileno de Terapia Ocupacional y 8ª Jornadas Nacionales de Terapia Ocupacional (pp. 143-160). Chile: COLTOCHILE.).

In this research, collective occupation (Ramugondo & Kronenberg, 2015Ramugondo, E., & Kronenberg, F. (2015). Explaining collective occupations from a human relations perspective: bridging the individual-collective dichotomy. Journal of Occupational Science, 22(1), 3-16. http://dx.doi.org/10.1080/14427591.2013.781920.
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) has been situated on the ontological plane, understanding that occupations are social practices, relationships, and subjects are constituted and produced in them (Algado et al., 2016Algado, S. S., Córdoba, A. G., Oliver, F. C., Galheigo, S. M., & García-Ruiz, S. (2016). Terapias ocupacionales desde el sur: derechos humanos, ciudadanía y participación. Santiago: Editorial Universidad de Santiago de Chile.). These are social production processes, in which “Collective Occupations are a fundamental strategy for the construction of identities, belongings and autonomy processes” (Guajardo, 2016Guajardo, A. (2016). Construcción de identidades, epistemes y prácticas en Terapia Ocupacional en Latinoamérica. En S. Simó, A. Guajardo, F. Corrêa, S. Galheigo, & S. García-Ruiz. Terapias Ocupacionales desde el Sur. Derechos Humanos, ciudadanía y participación (pp. 41-62). Santiago: Editorial Usach., p. 20).

Therefore, we emphasize that the intentionality of the occupations should be oriented to the common good (Tolvett, 2017Tolvett, M. P. (2017). Acerca de sentido de comunidad, ocupaciones colectivas y bienestar/malestar psicosocial: con jóvenes transgresores de territorios populares (Tesis doctoral). Universidad de VIC, España.), since the collective feeling is condensed, in actions and verbalizations, which are loaded with affection, which is historically constructed and are expressed in relationships that, naturally, are vague and imprecise. This is because as they flow through people, they are impregnated with individualities, which gives them their psychosocial character; but at least it avoids the fragmentation of that community feeling in multiple specific senses (Montero, 2004Montero, M. (2004). Introducción a la Psicología Comunitaria: desarrollo, conceptos y procesos. Buenos Aires: Editorial Paidós.). Indeed, under this framework of social action, collective occupations can be understood as an interconnection between the individual and the collective, between the public and the private, and between the subjective and the intersubjective. Thus, from this understanding of occupational therapy, we propose to overcome the Eurocentric colonization of human occupation, which is displacement, the notion of detachment towards the multidimensional condition of collective occupation (Pino & Ulloa, 2016Pino, J., & Ulloa, F. (2016). Perspectiva crítica desde Latinoamérica: hacia una desobediencia epistémica en terapia ocupacional contemporánea. Cadernos de Terapia Ocupacional da UFSCar, 24(2), 421-427. http://dx.doi.org/10.4322/0104-4931.ctoARF0726.
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). However, this view proposes to understand collective occupations as an intersubjective framework of collective social relationships of power (Núñez, 2019Núñez, C. M. V. (2019). Terapias Ocupacionales del Sur: una propuesta para su comprensión. Cadernos Brasileiros de Terapia Ocupacional, 27(3), 671-680. http://dx.doi.org/10.4322/2526-8910.ctoARF1859.
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). Social scaffolding, where the dialogues, which orbit between each other, between the social world and the public world, are the substratum that anchors the collective occupations of the individuals.

Moving towards the consolidation of community practices, with a social perspective in occupational therapy, implies a dialogue with the social actors involved in situated social contexts, articulating both individual and collective interests. Management tools, administration, and technical knowledge are required, but preferably will and political-ethical action (Valderrama et al., 2015Valderrama, M. C., Pino, M. J., Guzman, G. S., Zolezzi, G. R., Vera, A. R., Seguel, P., & Palma, D. (2015). Articulando la academia con la intervención comunitaria en salud mental: experiencia desde una terapia ocupacional social. Revista Chilena de Terapia Ocupacional, 15(2), 1-17. http://dx.doi.org/10.5354/0719-5346.2015.38169.
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). This context invites occupational therapists to build solutions located in the territories (Lopes et al., 2015Lopes, R. E., Malfitano, A. P. S., Silva, C. R., & Borba, P. L. O. (2015). Historia, conceptos y propuestas en la terapia ocupacional social de Brasil. Revista Chilena de Terapia Ocupacional, 15(1), 73-84. http://dx.doi.org/10.5354/0719-5346.2015.37132.
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).

Given this scenario, we have a challenge for the profession, in which its participation facilitates a relational balance between institutions and community organizations. Thus, it is important to address the theoretical-conceptual foundations that occur in everyday life where people with psychosocial disabilities act, since the individual challenges the contradictions of social reality, trying to cope with various forms of life (Galheigo, 2020Galheigo, S. M. (2020). Occupational therapy, everyday life and the fabric of life: theoretical-conceptual contributions for the construction of critical and emancipatory perspectives. Cadernos Brasileiros de Terapia Ocupacional, 28(1), 5-25. http://dx.doi.org/10.4322/2526-8910.ctoAO2590.
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).

For this reason, it is relevant for the discipline to broaden the understanding of the epistemological elements that are configured in the social world where occupational therapy operates, both in institutional and community contexts, since they could allow it to initiate tension with the medical model of psychiatry and overcome its hegemony. As Ravanal (2006)Ravanal, V. M. M. (2006). Enfoque comunitario: el desafío de incorporar a las comunidades en las intervenciones sociales. Santiago: Universidad de Chile. points out, institutions represent the world of the system, which is characterized by formal and rigid actions. Instead, communities identify with the world of life, which tends to build more informal, participatory, and less hierarchical relationships.

In this way, the possibility of a counter-hegemonic occupational therapy should be characterized by an awareness of its conditions and possibilities in the framework of power relations and control of the production of subjectivity in the mental health area, which will allow for more detailed readings of Occupational Therapy and to the inclusion processes experienced by people with psychosocial disabilities.

It is in the subjectivation processes that the symbolic and material dimensions of the notions of citizenship and collective occupations intersect and feedback, evidencing that citizen participation is an expression of freedom (Arce, 2019Arce, S. R. D. (2019). Infancia, derechos humanos y ciudadanía. Revista Latinoamericana de Derechos Humanos, 30(2), 61-80.). Social demand in which human rights appear “[...] as a set of faculties and institutions that, at each historical moment, specify the demands of dignity, freedom and human equality, which must be positively recognized by legal systems at the national and international levels” (Luño, 1991Luño, A. E. P. (1991). Derechos humanos, estado de derecho y constitución. Madrid: Editorial Tecnos., p. 48). Consequently, human rights are configured as an ethical framework that understands the complexity of social relationships and proposes a horizon of transformation, where the central purpose is human dignity (Flores, 2000Flores, J. H. (2000). El vuelo de anteo: derechos humanos y crítica de la razón liberal. Bilbau: Editorial Desclée de Brouwer., as cited in Mata, 2015Mata, A. C. (2015). El concepto de dignidad humana como fundamento axiológico y ético de los derechos humanos. Revista Latinoamericana de Derechos Humanos, 26(1), 39-58.).

The passage from a medical and functional perspective of disability to social perspectives that point out the restrictions that the environment presents for people with disabilities will begin to be part of international agreements with the Universal Declaration of Human Rights, approved in Paris in 1948, and the emergence of the community mental health care model under the welfare state and the implementation of psychiatric, health and social services reforms, initiated after World War II (Desviat, 2017Desviat, M. (2017). «Precariado» y control social: asistencialismo y exclusión en el ámbito de la salud mental. Cuadernos de Trabajo Social, 30(2), 369-376. http://dx.doi.org/10.5209/CUTS.55010.
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).

Many of the practices of social inclusion arise from the Universal Declaration of Human Rights, and the formation of the World Health Organization and currently they are forged by a growing social awareness of people with disabilities about their fundamental rights. They generate a set of value principles that will materialize in legal frameworks, such as the recognized Convention on the Rights of Persons with Disabilities (Organización de las Naciones Unidas, 2006Organización de las Naciones Unidas – ONU. (2006). Convención de derechos de personas con discapacidad. Nueva York: ONU.), which implied changes in the relations with the intervened individual, going from an individual and pathologized to a group and participatory one. In this same sense, Chile advances in the improvement of existing legal frameworks, such as the law that establishes norms on equal opportunities and social inclusion of people with disabilities (Chile, 2010Chile. (2010, 10 de febrero). Ley n° 20.422, de 10 de febrero de 2010. Establece normas sobre igualdad de oportunidades e inclusión social de personas con discapacidad. BCN, Chile..) and similarly, in the current promulgation of the norm of recognition and protection of the rights of people in mental health care (Chile, 2021Chile. (2021, 11 de mayo). Ley n° 21.331, de 11 de mayo de 2021. Del reconocimiento y protección de los derechos de las personas en la atención de salud mental. BCN, Chile.).

However, the community has experienced the fragmentation of social relationships, losing social bonds and capacity for collective articulation (Bang, 2014Bang, C. (2014). Estrategias comunitarias en promoción de salud mental: construyendo una trama conceptual para el abordaje de problemáticas psicosociales complejas. Psicoperspectivas, 13(2), 109-120. http://dx.doi.org/10.5027/psicoperspectivas-Vol13-Issue2-fulltext-399.
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). Therefore, despite the implementation of these ethical and legal frameworks, in Chile, there is still a gap in the community participation of people with psychosocial disabilities. Progress has been partial, so “[...] the right of people with mental disabilities to live and be included in the community cannot be guaranteed” (Observatorio de Derechos Humanos de las Personas con Discapacidad Mental, 2014Observatorio de Derechos Humanos de las Personas con Discapacidad Mental. (2014). Derechos humanos de las personas con discapacidad mental: diagnóstico de la situación en Chile. Santiago: Universidad de Chile., p. 38).

Based on the above, this research aimed to analyze the discourses of groups of people in situations of psychosocial disability, about their collective occupations and their socio-community inclusion.

Methodology

The research emphasizes studying the discourses of collective individuals configured in daily actions. For this, we used the qualitative methodology, which rescues discourses, languages, and the speech of the participants in a certain social context, through the situated participation of the researcher (Castro, 2004Castro, L. R. (2004). Consideraciones éticas en el desarrollo de investigaciones que involucran a seres humanos como sujetos de investigación las investigaciones en terapia ocupacional comunitaria. Revista Chilena de Terapia Ocupacional, (4), 19-24.).

The critical paradigm was the perspective on which this study was placed, the one that proposes historical-social realism as its ontological foundation. This is because “[...] the progress and reflection produced within is the basis of the interpretive models used by speakers to account for social reality” (Vasilachis de Gialdino, 2009Vasilachis de Gialdino, I. (2009). Los fundamentos ontológicos y epistemológicos de la investigación cualitativa. FQS:Forum Qualitative Social Research, 10(2), 1-26., p. 9).

The study participants were twelve women and eight men belonging to the Nuevo Despertar and Razón de Vivir community groups, from the communes of Penco and Concepción-Chile, respectively. These groups are made up of users of mental health services, family members, and friends.

The qualitative technique used to collect information was the discussion group (Gurdián-Fernández, 2007Gurdián-Fernández, A. (2007). El paradigma cualitativo en la investigación socio-educativa. San Jose: Editorial UCR.; Canales, 2006Canales, M. C. (2006). Metodologías de investigación socia: introducción a los oficios. Santiago: LOM Ediciones.), carried out once with each community group. The approximate time of each discussion group was ninety minutes, moderated by the researchers (2).

Thus, the collected discourses are configured as a network of practices and actions centered on language that favors social relations (Antaki & Iñiguez-Rueda, 1994Antaki, C., & Iñiguez-Rueda, L. (1994). El análisis del discurso en psicología social. Boletín de Psicología, (44), 57-75.).

To respond to ethical considerations, the study incorporated an informed consent form, which disclosed the objectives and academic purposes of the research and established the voluntary nature of the participation and confidentiality of the information collected. This document was presented and explained by the researchers at the time of the discussion groups. It was delivered to each participant, later it was signed and delivered by each member before starting the conversational instances. Therefore, we guaranteed the bioethical principles of non-maleficence, beneficence, autonomy, and justice of the participants.

The organization of the discussion group took place in the usual meeting places of the groups (Municipal Library & House of Disability), spaces that allowed for generating trust and openness with each group investigated. After this, we gave instructions related to the participation to facilitate the debate, which was:

  • Presentation of thematic areas to consult;

  • Respect for the interventions of the participants.

In addition, the participants were asked for their authorization to record the instance through audiovisual means.

In the execution of the discussion groups, the researchers generated guiding questions and supported them with a thematic script that they had previously established, leaving a time of one hour for the discussions.

The thematic areas defined in the script for both group meetings were:

  • Experiences of inclusion and exclusion in the community;

  • Experiences of the group;

  • Relationships with institutions and other community groups.

The information analysis technique used was critical discourse analysis, favoring the reflective approach to the stories, and preventing the theory from unilaterally establishing the limits of the inquiry. In the same sense, this strategy encourages the researcher to be reconfigured and to be part of what he studies, that is, to assume a problematizing position, making oppressed groups aware of a reality installed by a greater power (Iñiguez-Rueda, 2003Iñiguez-Rueda, L. (2003). Análisis del discurso: manual para las ciencias sociales. Barcelona: Editorial UOC.).

The qualitative information production process began with the transcription of the recorded speeches. Once the texts were obtained, then we read an in-depth reading to continue with open coding, paragraph by paragraph (Cohen & Seid, 2019Cohen, N., & Seid, G. (2019). Producción de datos cualitativos. In N. Cohen & G. G. Rojas (Eds.), Metodología de la Investigación ¿Para qué? (pp. 203-227). Buenos Aires: Editorial Teseo.) where relevant categories emerged, which were ordered in a categorical matrix.

As soon as we identified the categories, we established the relationships between the phenomena, which allowed organizing the results of the study.

Results

Below, we show the results of the study obtained after the coding and categorization of speeches expressed by the participants of two groups of people with psychosocial disabilities in two discussion groups.

Collective identities

From the notions of collective occupation, it is possible to realize that the group context is the stage of participation of its members, where transindividual identities are built.

This is how, in the discourses analyzed, the collective identity gestated in doing in common emerges, for the participants of the Groups “Nuevo Despertar” (New Awakening) and “Razón de Vivir” (Reason for a living), as expressed by X, Group No. 1:

Sometimes we don't do anything but get together, but the fact that everyone is there is great.

In the same way, the idea of collective identity is reported by E, Group N°1:

We have a common goal.

In the group context of collective identity, stories emerge related to the organizational support generated by groups of people with psychosocial disabilities, as referred to by J, Group No. 1:

The simple fact that they call me already makes me feel important, I already know that there is someone interested in attending and going. It motivates.

The research participants clearly express that the organizational support of these social groups expressed in collective occupations produces intersubjective well-being, which builds collective mental health, as expressed by S, Group N°1:

Always get together, always be in touch, be altogether.

Because the communities share common values, they are consolidating as a social group, also generating cohesion among the participants and identification with the organizations, as can be seen in the words of Er, Group No. 2:

Yes, well here the boys do not participate many with other organizations but I participate as president and some proxies, and there is the inclusion.

In the discussion groups carried out, discourses about collective identity emerge, which reveal a limited link with other community organizations. This is due to the decision-making that mainly comes from the governing bodies of the organizations.

In this way, the construction of collective identities occurs in group actions with a sense of common and shared projects (Garcés Montoya, 2010Garcés Montoya, A. (2010). De organizaciones a colectivos juveniles: Panorama de la participación política juvenil. Ultima década, 18(32), 61-83. https://dx.doi.org/10.4067/S0718-22362010000100004.
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).

Psychosocial support networks

Based on the reports of the participants in the discussion groups, they recognized the relevance of strengthening community networks of psychosocial support, sharing experiences between the group, the family, and the community, activating personal resources, and feelings of well-being and protection. As expressed in the words of E, a member of Group No. 1:

One can guide people with facts, not only with words, no, but that this is life and you have to seek support, a lot of support, because it is what is most needed and why, in reality, when you are a mother it is complicated because one feels very sad about everything, so what is most needed is social support, and I found it and I am thankful for that.

From the discourses of the discussion groups of people with psychosocial disabilities and their families, it is possible to identify the experiences associated with disability. Some of these experiences are actions to strengthen organizations, and promote network support, as expressed in the following story by Jc, Group No. 2:

As for the group, that type of instance is super important, because the end of the whole thing is supposed to be a self-help group.

In addition, this network of collective occupations of psychosocial support allows it to be the basis for defining purposes and projects of the groups studied. This is the situation that can be evidenced in the reports of Eb, Group N°1, and Am, Group N°2, respectively

We have tried to do things but they have not worked out perfectly, we are still in our infancy, but the main thing is that the doors are open to help everyone.

It is good that these groups are made, to be able to participate in all these issues and ask why nobody knows everything.

The exposed discourses show that to build the networks of the groups, they are configured through collective learning and common affections among the members of the organizations.

Institutionalized inclusion

The inclusion of people with psychosocial disabilities has traditionally been developed by public and private social institutions, with predominant action by the State, which acts as a qualifier of rights of economic and social support, being consistent with the economic policies of targeting and subsidy. This is how participant J, Group No. 2 states:

I'm going to talk to the social worker, and Miss, I'll come if I can have a pension and my studies have already started and everything, and in two or three months my pension will arrive.

Within the discourses referring to the understanding that society has about disability, the stories express that the biomedical approach continues to predominate, so that inclusion is institutionalized, limiting the participation of the members of social groups, as expressed by Eb, Group No. 1:

Society is not prepared to accept such a person, there is the level of psychologists, and professionals, but it is the most specific cases that arrive at the hospital but not outside…yes, it is difficult for psychologists to imagine that we are ignorant.

Thus, family members and caregivers of people with psychosocial disabilities are limited in recognizing their experiential knowledge related to inclusion, which maintains the hegemony of the medical model in mental health institutions (Bang, 2014Bang, C. (2014). Estrategias comunitarias en promoción de salud mental: construyendo una trama conceptual para el abordaje de problemáticas psicosociales complejas. Psicoperspectivas, 13(2), 109-120. http://dx.doi.org/10.5027/psicoperspectivas-Vol13-Issue2-fulltext-399.
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), resulting in technical knowledge prevailing over personal knowledge.

Institutional dialogues

Although mental health institutions have the responsibility to guarantee psychosocial rehabilitation treatments and processes, dialogues with communities are always in dispute. This is how it is expressed by L, Group N°1:

I have always said and emphasized that it is the worst management, I do not know who is in charge of the communication area in the hospital but there is a communication problem in the hospital, but the community is not informed, I live in the center of the community.

Ineffective communication channels hinder the interests of the community and the relationships of individuals with each other. This is showing limited institutional and community articulations, as denoted in the voice of participant E, from Group No. 1:

I think that the same municipality is also responsible for informing, the office too, I experienced it when I took “Jean” when he began to treat by a psychologist, a social worker, they never told me that there was a day hospital, they never told me that.

In this way, people with psychosocial disabilities and their families negatively experience relationships with state institutions responsible for guaranteeing social inclusion, a situation expressed by C, Group N°2:

I would like to say that inclusion is fine, but exclusion is a matter of the state, for example, in disability services they do not study what disability is, and there are no spaces for people with disabilities, that is what I am going for.

In the speeches expressed, we identified the demand of the groups to receive timely and accessible information. Thus, there is as better care in interactions with institutions related to inclusion and disability.

Rights and inequality

The speech of the participants of the community groups shows the conditions in which the human rights of people in situations of psychosocial disability are exercised, both in their collective and individual expressions, as we can observe in the words of Y, Group No 2:

I find that people do not discriminate, but feel compassion for the sick person, that is, they say she is sick, and oh poor thing, and she is in treatment and how is she, so they feel compassion for the sick person.

The social participation of the members of the groups involved in the research is reported as discrimination, even in their communities, a situation that is pointed out in the words of F, Group No. 2:

I have felt discriminated against because sometimes they look at me like something strange, like lazy, like I have something, they look at me if I ask for money, they look at me if I do nothing, suddenly I felt discriminated against.

Socio-community stigmatization of psychosocial disability is expressed in the spaces of daily interaction of the participants of the groups, pointed out by Eb, Group No. 1:

Yes, the neighbors have told me when I go to the hospital, I go permanently, I go to the hospital and suddenly I comment on my things and the things I do there and some say: “you are hanging out”, who pays you, “straight away” they devalue, they don't help anything, not all of them, and also “arguing”.

These stories from their experiences showed that there is a culture of discrimination in the daily environments of the groups investigated, which socio-culturally marginalizes its participants. In this sense, the study participants live their rights in conditions of inequality, a product of fear and exclusion, which forces them to stay outside the communities (Rüsch et al., 2005Rüsch, N., Angermeyer, M., & Corrigan, P. (2005). Mental illness stigma: concepts, consequences, and initiatives to reduce stigma. European Psychiatry, 20(8), 529-539.).

Citizenship and collective occupations

The collective occupations of the psychosocial PsD groups that participated in the research are characterized by actions to claim their rights and citizenship, as can be seen, expressed in Er, Group No. 2:

In the group, we have done a lot of publicity so later they come saying I thought that schizophrenia was this and it is not all, that is the reason for this group, to spread and represent with facts that it is not like that, in the same scope of inclusion us as mental health.

Collective initiatives of social change of the groups studied, promote the exercise of their rights in the territories. Which are strategies that seek to generate transformations in the daily activities of the communities. As participant El, Group N°1 points out:

That is what we are thinking about, the communal disability union is being formed in Penco so that all the groups that we want and we are all in contact and we can all cooperate and help, that is one of the objectives of that communal union.

In the discourses analyzed, ethical principles and values are identified that support the collective projects of community groups, as Eb, Group N°1 comments:

People cannot be forced to participate, to attend, the doors are open. And now some courses and interesting things are going to come, but it can't be for personal convenience either, but that those who are going to arrive are to support and give more ideas.

From the speeches expressed, they revealed how self-management is a central element in the citizenship of groups of people with psychosocial disabilities, expressing the actions of the organization, interaction, and value principles that they share.

Discussion

In this research, we observed that the collective occupations of groups of people with psychosocial disabilities and their families, vindicate their resistance toward individualism, advocating the construction of an intersubjective collective being (Tolvett, 2015Tolvett, M. P. (2015) Sentido de comunidad y ocupaciones colectivas. In Actas del 1º Congreso Chileno de Terapia Ocupacional y 8ª Jornadas Nacionales de Terapia Ocupacional (pp. 143-160). Chile: COLTOCHILE.). In this regard, Montero (2006)Montero, M. (2006). Teoría y práctica de la psicología comunitaria: la tensión entre comunidad y sociedad. Buenos Aires: Editorial Paidós. points out that the organizations of a community are characterized by interpersonal support since it is felt by its members as a source of socio-emotional components, where affective and supportive alliances are built. Thus, internal culture is built, which is strengthened through interdependent relationships between its participants (Chuaqui, 2012Chuaqui, J. (2012). Microsociología y estructura social global. Santiago: LOM Ediciones.), in which a collective occupation is forged, as a network of psychosocial support for the mental health of the members of the groups. This is because “[...] it seeks that these people and their problems find a framework where, in the presence of others and a non-anonymous context, it is possible to express themselves, share difficulties” (Alfaro, 2000Alfaro, J. (2000). Discusiones en psicología comunitaria. Santiago de Chile: RIL Editores., p. 62).

The networks of collective occupations materialize the intersubjective well-being of the participants, in a set of relationships, expressed in a context of reciprocal interrelationships with each other (Alfaro, 2000Alfaro, J. (2000). Discusiones en psicología comunitaria. Santiago de Chile: RIL Editores.). Characterized by cohesion, and orientation toward overcoming their social problems (Montero, 2004Montero, M. (2004). Introducción a la Psicología Comunitaria: desarrollo, conceptos y procesos. Buenos Aires: Editorial Paidós. as cited in Quiroga & Reyes, 2019Quiroga, D. M. O., & Reyes, M. S. (2019). Terapia ocupacional en comunidad: complejidades, acciones y contextos. Cadernos Brasileiros de Terapia Ocupacional, 27(1), 197-207. http://dx.doi.org/10.4322/2526-8910.ctoRE1715.
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). In opposition to the collective occupations of people with psychosocial disabilities and their families, they face the dominance of the medical model (Menéndez, 1988Menéndez, E. L. (1988). Modelo médico hegemónico y atención primaria. In Actas del 2ª Jornadas de Atención Primaria de la Salud (pp. 451-464). Buenos Aires: Asociación Médica del Hospital de Niños Ricardo Gutierrez y Comisión Argentina de Residentes del Equipo de Salud.), which colonizes knowledge as the only form of knowledge, legitimized by the State through its mental health promotion and support institutions. This situation is expressed in the predominance of scientific psychiatry, in the maintenance of its hegemonic discourses in the mental health area, allowing institutions to maintain power asymmetries in everyday contexts of the individual (Soto, 2012Soto, C. P. (2012). Una nueva antipsiquiatría. Santiago: LOM Ediciones.). This is because an understanding of a functionalist approach to disability is still present (Palacios, 2008Palacios, A. (2008). El modelo social de discapacidad: orígenes, caracterización y plasmación en la Convención Internacional sobre los Derechos de las Personas con Discapacidad. Madrid: Grupo Editorial CINCA.).

In this research, when analyzing the processes of inclusion in people with psychosocial disabilities, we observed that there is a clear institutional orientation that monopolizes the socio-community inclusion of groups of people with psychosocial disabilities, that in times of liquid society (Bauman, 2002Bauman, Z. (2002). Modernidad líquida. Buenos Aires: Fondo de Cultura Económica de Argentina.), the neoliberal system encourages individualistic personal projects, which presents more difficulties to exercise collective rights, breaking the social bonds as community support for excluded and vulnerable groups.

In this way, the traditional mental health institution is built based on the structured logic and with an organic distribution of power and with most decision-making at a hierarchical and bureaucratic level; with a high concentration of state power (Castells, 2009Castells, M. (2009). Comunicación y poder. Madrid: Alianza Editorial.), which the relationships between the users of mental health services are considered secondary, with predefined roles; where the actions and activities have a high degree of segmentation and specialization (Ravanal, 2006Ravanal, V. M. M. (2006). Enfoque comunitario: el desafío de incorporar a las comunidades en las intervenciones sociales. Santiago: Universidad de Chile.). In this way, they generate dialogues between the mental health institutions and the participants of the groups, showing two positions that interact and modify each other (Velásquez, 2005Velásquez, L. A. P. (2005). La transdisciplinariedad. Más allá de los conceptos, la dialéctica. Andamios, 1(2), 43-77.), a relationship in which the actors involved exchange discussions and positions in conflict.

In this research related to the exercise of human rights by people with psychosocial disabilities, these would be limited by social stigma (Goffman, 2006Goffman, E. (2006). Estigma: la identidad deteriorada. Buenos Aires: Amorrortu Editores.), because it generates negative feelings of invalidation and undervaluation in people, producing a submission relationship (Mora-Ríos & Bautista, 2014Mora-Ríos, J., & Bautista, N. (2014). Estigma estructural, género e interseccionalidad. Implicaciones en la atención a la salud mental. Salud Mental, 37(4), 303-312.). Along the same lines, people with psychosocial disabilities are unequally recognized for their will and self-determination (Servicio Nacional de la Discapacidad, 2015Servicio Nacional de la Discapacidad - SENADIS. (2015). Presentan libro “Discapacidad y Salud Mental: una visión desde SENADIS”. Chile: SENADIS.), since being a group segregated by the community as a whole (Ferreira, 2008Ferreira, M. A. V. (2008). Una aproximación sociológica a la discapacidad desde el modelo social: apuntes caracteriológicos. Revista Espanola de Investigaciones Sociologicas, (124), 141-174. http://dx.doi.org/10.2307/40184909.
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) they are with sociocultural barriers that deprive them of independent life.

To overcome these inequalities that threaten a dignified life, people with psychosocial disabilities and committed family members are organized in their communities to resist exclusion. These practices show that “[...] when talking about action in social systems, there must be an objective or purpose that coordinates the acts carried out by the different members that take part in the action” (Chuaqui, 2012Chuaqui, J. (2012). Microsociología y estructura social global. Santiago: LOM Ediciones., p. 209). These actions protect the rights and obligations that every person has as a member of a community, where the right to equality is an ethical principle that constitutes the person-society relationship (Custo, 2008Custo, E. (2008). Salud mental y ciudadanía: una perspectiva desde el trabajo social. Buenos Aires: Espacio.). This is because a society must move toward the participation of all people, promoting equal opportunities for its members (De Lorenzo García, 2003De Lorenzo García, R. (2003). El futuro de las personas con discapacidad: desarrollo humano y discapacidad. Madrid: Fundación Once. as cited in Ardila-Gómez et al., 2016Ardila-Gómez, S., Hartfiel, M. I., Fernández, M. A., Ares Lavalle, G., Borelli, M., & Stolkiner, A. (2016). El desafío de la inclusión en salud mental: análisis de un centro comunitario y su trabajo sobre los vínculos sociales. Salud Colectiva, 12(2), 265-278.).

Under the aforementioned foundations, people with psychosocial disabilities can exercise their rights in conditions of dignity (Basaglia, 2008Basaglia, F. (2008). La condena de ser pobre y loco: alternativas al manicomio. Buenos Aires: Topía Editorial.), a social context in which collective occupations in mental health, co-constructed and depending on how they are managed, can become paths for effective emancipatory processes of their participants.

Conclusion

In this research, the speeches of two groups of people with psychosocial disabilities were analyzed. “Nuevo Despertar” from the commune of Penco, and “Razón de vivir” from Concepción. Through them, we identified experiences and dialogues that emerge from their collective occupations in the territory they live in.

The groups analyzed show different expressions of leadership. In the group “Razón de Vivir” the participation of its members is supervised, while in the group “Nuevo Despertar” collective occupations tend to be democratic.

From their collective and relational scenarios, which are dynamic (Riquelme et al., 2020Riquelme, P. L., Lagos Beltrán, L., & Valderrama Nuñez, C. (2020). Aproximaciones a las practicas de terapia ocupacional y su relación con algunos principios éticos de los derechos humanos. Cadernos Brasileiros de Terapia Ocupacional, 28(3), 746-764. http://dx.doi.org/10.4322/2526-8910.ctoAO1919.
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), the groups studied build their identities through permanent interaction.

In most of the participants, who are users of public mental health services, there is an understanding of the group as an extension of rehabilitation therapies, therefore participation is understood as recovery from the disease. This would not generate greater psychosocial well-being in its members, but rather more discipline.

Subjective, cognitive, and emotional evaluations of satisfaction (Montero, 2004Montero, M. (2004). Introducción a la Psicología Comunitaria: desarrollo, conceptos y procesos. Buenos Aires: Editorial Paidós.), expressed in organizations, are interfered with by the disciplinary power that “[...] produces; it produces reality; it produces spheres of objects and rituals of truth” (Foucault, 2012Foucault, M. (2012). Vigilar y castigar: nacimiento de la prisión. Buenos Aires: Siglo XXI Editores., p. 225). Therefore, these collective occupations carried out by the aforementioned groups are also in tension with the biopolitics and governmentality of State institutions, affecting their sense of community.

From the results that emerge from the investigation, we could show that depoliticization and dependence on mental health institutions are still present in the groups studied. This reiterates that medical knowledge continues to dominate the mental health area and the inclusion of people with psychosocial disabilities. Therefore, the collective occupations of organizations are reproduced from the socially dominant common sense (Tolvett, 2017Tolvett, M. P. (2017). Acerca de sentido de comunidad, ocupaciones colectivas y bienestar/malestar psicosocial: con jóvenes transgresores de territorios populares (Tesis doctoral). Universidad de VIC, España.).

Regarding the dialogues of knowledge in mental health, institutionalization delegitimizes the debate and the critical reflection of the members of the community groups, which prevents the expansion of horizons of transformation of their symbolic and material conditions of life. In this way, collective occupations are activated when they are articulated to the community fabric, but they become institutionalized when they are governed by institutional mental health devices.

The challenge of building emancipatory political communities (Harnecker & Bartolomé, 2016Harnecker, M., & Bartolomé, J. (2016). Planificando para construir organización comunitaria. Barcelona: El Viejo Topo.), will help overcome negative stereotypes and create an inclusive community that recognizes the value of differences (Madrid, 2015Madrid, J. C. C. (2015). Metodologías participativas en salud mental: alternativas y perspectivas de emancipación social más allá del modelo clínico y comunitario. Teoría y Critica de la Psicología, 5, 79-97.).

This research has also been able to reveal that people with psychosocial disabilities have a lot to say and contribute about their lives and that they have the ability and interest to tell their personal stories. Also, they actively participate in their groups, exercising their right to citizenship, which is an experience that contributes positively to their self-determination.

Therefore, the human rights of people with psychosocial disabilities materialize in a field of collective occupations, daily actions in everyday scenarios, and social conflict, generated between dialectics of inclusion/exclusion and psychosocial discomfort/well-being.

In Social Occupational Therapy, its fundamental ideas about understanding human occupation are inherently political (Pollard & Sakellariou, 2014Pollard, N., & Sakellariou, D. (2014). The occupational therapist as a political being. Cadernos Brasileiros de Terapia Ocupacional, 22(3), 643-652. http://dx.doi.org/10.4322/cto.2014.087.
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), leading to think about the practices of the profession in the mental health area, beyond institutional and technical issues. That is, to think “[...] a political practice because we produce ourselves from social problems. We question a reality of which we are part” (Córdoba, 2011Córdoba, A. G. (2011). Ocupación: sentido, realización y libertad. Diálogos ocupacionales en torno al sujeto, la sociedad y el medio ambiente. Bogotá: Universidad Nacional de Colombia., p. 19).

This is why the study proposes Occupational Therapy to generate actions with a critical sense that question the community practices of institutional mental health devices, highlighting the dialectical conflicts experienced by groups of people with psychosocial disabilities and favoring the construction of collective occupations based on human rights.

Within the limitations of the study, we recognized the non-participation of officials and workers of mental health institutions that hindered knowing their experiences at work with groups of people with psychosocial disabilities.

Another limitation that we observed in this research was the impossibility of incorporating other organizations of people with psychosocial disabilities present in the territories due to the time considered for the execution of the study.

  • How to cite: Vera Angulo, R. J., Parra Molina, V. A., & Sepúlveda Carrasco, C. R. (2022). Socio-community inclusion and collective occupations: Dialogues between the institutional world and that of organizations of people with psychosocial disabilities. Cadernos Brasileiros de Terapia Ocupacional, 30, e3139. https://doi.org/10.1590/2526-8910.ctoAO240631392
  • The preparation of the research design, problem statement, theoretical framework, methodological framework, and data collection was developed with resources available for the Postgraduate Seminar of the School of Occupational Therapy of the Andrés Bello University, headquarters in Concepción, Chile. Some of the resources of the article that emerges from this research are from the researchers' funding and other funding from the specific research roles performed by authors who have developed this work.

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Edited by

Section editor

Prof. Dr. Vagner dos Santos

Publication Dates

  • Publication in this collection
    15 June 2022
  • Date of issue
    2022

History

  • Received
    26 Aug 2021
  • Reviewed
    09 Nov 2021
  • Reviewed
    03 Feb 2022
  • Accepted
    05 Feb 2022
Universidade Federal de São Carlos, Departamento de Terapia Ocupacional Rodovia Washington Luis, Km 235, Caixa Postal 676, CEP: , 13565-905, São Carlos, SP - Brasil, Tel.: 55-16-3361-8749 - São Carlos - SP - Brazil
E-mail: cadto@ufscar.br