The objective of this study is to analyze the implications on subjectivity and changes in daily life of those who participated as attendees at the Anti-stigma Conferences in the city of Concepción in Chile, a socio-educational practice, of an interinstitutional and interdisciplinary nature, whose purpose is to generate a cultural change on stigmatization in the field of mental health. A systematization of this experience is developed, emphasizing the history and the methodologies applied in it. The information for the analysis is produced through a discussion group with 14 participants. The results show that there is an impact on the subjectivity of those who provide assistance, since contact with stigmatized subjects and with their life experiences around them is encouraged. However, the transformation of practices in everyday spaces is presented as a challenge, aspects that require intersectoral efforts and an institutional framework that generates the bases and development of adequate public policies for this. In this respect, it is imperative to include decolonial and intercultural perspectives and practices in the field of mental health.
Intersectorial colaboration; Social stigma; Mental Health; cultural competency
In the field of mental health, stigma is widely recognized and attested by numerous research studies on the subject. Several authors have contributed to the understanding about social stigma, among them, Michaels, López, Rüsch (2012MICHAELS, P.; LÓPEZ, M.; RÜSCH, N. et al. Constructs and concepts comprising the stigma of mental illness. Psychology, Society, & Education, Almeria, v. 4, n. 2, p. 183-194, 2012. DOI: 10.25115/psye.v4i2.490
https://doi.org/10.25115/psye.v4i2.490... ) point out that stigma is characterized as a sociocultural process, in which a certain group of people are labeled by others, since they present characteristics and attributes that are not socially acceptable or “normal”. From this perspective, stigma is the expression of a society structured on the basis of power relations in which people called “mad” are diminished and subjugated.
Simultaneously, through what is known as self-stigma or internalized stigma, it is possible to identify the negative effects of stigma on the subjectivity of those who suffer from it, damaging self-esteem and self-perception (Nascimento; Leão, 2019NASCIMENTO, L. A.; LEAO, A. Estigma social y estigma internalizado: la voz de las personas con trastornos mentales y los enfrentamientos necesarios. Historia, Ciencia y Salud, Río de Janeiro, v. 26, n. 1, p. 103-121, 2019. DOI: 10.1590/s0104-59702019000100007
https://doi.org/10.1590/s0104-5970201900... ), increasing the chances of suicidal risk due to the hopelessness and devaluation it produces in people who suffer with it (Touriño; Acosta; Giráldez et al., 2018TOURIÑO, R.; ACOSTA, F. J.; GIRÁLDEZ, A. et al. Riesgo suicida, desesperanza y depresión en pacientes con esquizofenia y autoestigma. Actas Españolas de Psiquiatría, Madrid, v. 46, n. 2, p. 33-41, 2018.), internalizing the role of sick person in detriment of the role of citizen or subject of rights (Badallo; Pérez; Bertina, 2018BADALLO, A. PÉREZ, F. B.; BERTINA, A. et al. La dinámica estigmatizante: generación y mantenimiento del estigma y el autoestigma asociado al trastorno mental en la vida cotidiana. Clínica Contemporánea, Madrid, v. 9, p. e1-15, 2018. DOI: 10.5093/cc2018a3
https://doi.org/10.5093/cc2018a3... ). In addition, it produces discrimination, social exclusion and difficulties in the exercise of citizenship, substantially affecting people with a psychiatric diagnosis (Aparecido; Silva, 2020APARECIDO, G.; SILVA, D. Personas con esquizofrenia: percepción de la discriminación y el estigma. Investigación, sociedad y desarrollo, Vargem Grande Paulista, v. 9, n. 3, e78932444, 2020. DOI: 10.33448/rsd-v9i3.2444
Given the implications of stigma in people with a psychiatric diagnosis, it is essential to generate actions to reduce stigma and its consequences. Authors such as Mehta, Clement, Marcus et al. (2015MEHTA, N.; CLEMENT, S.; MARCUS, E. et al. Evidence for effective interventions to reduce mental health-related stigma and discrimination in the medium and long term: systematic review. British Journal of Psychiatry, London, v. 207, n. 5, p. 377-384, 2015. DOI: 10.1192/bjp.bp.114.151944
https://doi.org/10.1192/bjp.bp.114.15194... ) and Agrest, Mascayano; Ardila-Goméz (2015AGREST, M.; MASCAYANO, F.; ARDILA-GOMÉZ, S. E. et al. Investigación del estigma de las enfermedades mentales en Argentina. BJPsych International, Cambridge, v. 12, n. 4, p. 86-88, 2015. DOI: 10.1192/s2056474000000623
https://doi.org/10.1192/s205647400000062... ) state the importance of reviewing and advancing in the development of local strategies and public policies that can support a cross-cutting perspective on the issue of stigma.
According to Campos, Oviedo and Herazo (2014CAMPOS, A.; OVIEDO, H.; HERAZO, E. Prevalencia de síntomas, posibles casos y trastornos mentales en víctimas del conflicto armado interno en situación de desplazamiento en Colombia: una revisión sistemática. Revista Colombiana de Psiquiatría, Bogotá, DC, v. 43, n. 4, p. 177-185, 2014. DOI: 10.1016/j.rcp.2014.07.003
https://doi.org/10.1016/j.rcp.2014.07.00... ), and Bang (2014BANG, C. Estrategias comunitarias en promoción de salud mental: construyendo una trama conceptual para el abordaje de problematicas psicosociales complejas. Psicoperspectivas, Valparaíso, v. 13, n. 2, p. 109-120, 2014. DOI: 10.5027/psicoperspectivas-Vol13-Issue2-fulltext-399
https://doi.org/10.5027/psicoperspectiva... ) a structured process of sensitization and education of the different groups and communities is necessary for the development of stigma reduction strategies, in order to promote knowledge and favor intersectoral work. They also state that interventions should be consistent over time, using diverse methodologies and incorporating different sectors of society (intersectoral), including the strengthening of community and territorial networks.
This study offers an experience of stigma reduction, including the suggestions mentioned above, from an interinstitutional, interdisciplinary and territorial perspective. We refer to the Anti-Stigma Conference, an activity that has been held since 2011 in Concepción city, in the Bio Bio region, Chile, which could be an experience that allows progress towards the decolonization of practices and knowledge that have historically developed institutions, social organizations and society as a whole, around the reduction of the stigma of people with psychiatric diagnoses.
About the Anti-Stigma Conferences
The Anti-Stigma Conferences are characterized by the development of participative, dialogic, collaborative and associative methodologies among all the social actors involved in its execution, at the level of its organization as well as its thematic proposal and the methodologies by which it is developed (Fernández; Vinencio; Vallejos et al., 2016FERNÁNDEZ, P. G.; VINENCIO, R. D.; VALLEJOS, M. S. et al. Prácticas Anti-estigma como Eje articulador del Trabajo Comunitario en Salud Mental. Global Journal of Community Psychology Practice, Wichita, v. 7, n. 1, p. 1-15, 2016.). This has been possible because the principles that circulate among the organizers are solidarity, equity and trust, which we consider important values for teamwork.
Other attributes of this meetings are their interdisciplinary and inter-institutional character, since representatives of different institutions and disciplines from the field of education, such as the Universidad de Concepción (psychology department) and Universidad Andrés Bello (Occupational Therapy career) ; health, such as the Regional Ministerial Secretariat of Health of Bio (SEREMI - Secretaría Regional Ministerial) and the Talcahuano Health Service; and the field of social protection, such as Fundación Rostros Nuevos del Hogar de Cristo (New Faces of Christ Home Foundation), participate in the organization of these Conferences. In addition, social organizations, such as the group of ex-mental health users group (AESAM - agrupación ex usuarios de salud mental) and the Corporation Voces (Voices). Since stigma is a complex social problem, it requires coordinated efforts and a diversity of knowledge and practices for its reduction. Thus, the anti-stigma conferences join forces to advance in this purpose; their objective is to generate a meeting space that allows the exchange of opinions and experiences, for the development of a cultural change on stigmatization and the promotion of mental health and human rights.
In the following, some characteristics corresponding to the organization of the Conferences are presented, to then introduce the methodologies developed and the most relevant milestones in 2016 - 2018.
The intersectoral committee of the Conferences is the group of people who, representing the institutions and organizations mentioned above, design, plan, execute and evaluate the Conferences. In systematic meetings, they discuss the progress and fulfillment of the responsibilities assumed by their members. All of them make available their knowledge, experiences and contact networks for the elaboration of the program to be developed.
This project includes 3 activities that are carried out during the year; first, a contest of good inclusive practices, which allows showing successful experiences in the reduction of stigma. The second activity is training workshops, a space allowing reflection and deepening of topics associated with the central theme to be addressed during the year, including the participation as rapporteurs of experts by experience, academics and mental health professionals. Finally, the third activity corresponds to the Conference, in which the central theme is presented from different perspectives and experiences. All the aforementioned activities are aimed at health and mental health teams, academics, students, leaders of social and communal organizations, among others.
The exhibitors and experts invited for their experiences participate as volunteers, and the organization covers the costs of airfare, accommodation and meals as applicable.
Methodologically, the Anti-Stigma Conferences unfolds a variety of teaching strategies with the intention of having an effect on the participants, among which we can mention the workshops as a space for the analysis of cases, to develop active and significant learning, through cooperative problem solving.
Exhibitions are developed to facilitate reflection processes on the relevant subjects. In order to promote learning experiences in a symmetrical relationship, discussions are held with guests defined as “experts by experience”. This denomination is attributed to people with psychiatric diagnoses and/or their family members. They are considered experts on the health problem and on the family and social scope of this, since they are the ones who permanently live with it, and above all constitute their identity, configure their subjectivity, recognizing above all their condition as a legitimate and authentic other (Salas, 2017SALAS, M. Usos de [la] locura: hacia el reconocimiento de nuevas lógicas interpretativas del sufrimiento humano. Salud Colectiva, Buenos Aires, v. 13, n. 4, p. 713-729, 2017. DOI: 10.18294/sc.2017.1613
https://doi.org/10.18294/sc.2017.1613... ; Castillo, 2018CASTILLO, T. Subjetividad y autonomía: significados y narrativas sobre la discontinuación de fármacos psiquiátricos. Salud Colectiva, Buenos Aires, v. 14, n. 3, p. 513-29, 2018. DOI: 10.18294/sc.2018.1861
https://doi.org/10.18294/sc.2018.1861... ; Cea-Madrid; Parada, 2018CEA-MADRID, J.; PARADA, T. C. Locura y neoliberalismo. El lugar de la antipsiquiatría en la salud mental contemporanéa. Política y Sociedad, Madrid, v. 55, n. 2, p. 559-574, 2018. DOI: 10.5209/POSO.57277
https://doi.org/10.5209/POSO.57277... ). In order to carry out these discussions, an interview script is designed and presented to the participants previously so that they can make observations and participate in the construction of the topics to be discussed in the space.
In the case of presentations and discussions, there is time for attendees to ask questions or make comments on the topics and experiences presented. This space is called plenary sessions and it is relevant because allows the exchange of knowledge, experiences and life stories not only of the speakers but also of the attendees, who share them voluntarily, enriching everyone’s learning in a collective way.
Other strategies incorporated in recent years include theater, allowing the recreation of everyday situations of stigmatization in order to humanize the effects of discrimination by appealing to the affective understanding caused by this method. This method is implemented in two ways: with the presentation of plays about the experiences of people with a diagnosis; and by dramatizing a story related to the topic during the development of the Conference, with participation of university students, organizers and experts. Videos and other materials are produced to disseminate and promote citizenship.
Finally, autoethnography (Guerrero, 2014GUERRERO, J. El valor de la auto-etnografía como fuente para la investigación social: del método a la narrativa. AZARBE, Murcia, n. 3, p. 237-242, 2014.) has been incorporated to offer first-person testimonies of the experience of stigma and its implications in daily life, highlighting the emotional and subjective aspects of this experience, in order to understand from this perspective the social extent of the phenomenon of stigma.
All the strategies and methodologies used in the Conferences can be considered concrete suggestions for other institutions or social organizations that have among their objectives to generate practices for overcoming the stigma.
For the purposes of this text, it is relevant - according to Fernández, Vinencio, Vallejos et al. (2016FERNÁNDEZ, P. G.; VINENCIO, R. D.; VALLEJOS, M. S. et al. Prácticas Anti-estigma como Eje articulador del Trabajo Comunitario en Salud Mental. Global Journal of Community Psychology Practice, Wichita, v. 7, n. 1, p. 1-15, 2016.) - to contemplate that stigma reduction interventions require considering and evaluating the changes at the subjective level that these actions produce and how the participating subjects implement changes in their daily lives and in the communities. In addition to the above, Salas (2017SALAS, M. Usos de [la] locura: hacia el reconocimiento de nuevas lógicas interpretativas del sufrimiento humano. Salud Colectiva, Buenos Aires, v. 13, n. 4, p. 713-729, 2017. DOI: 10.18294/sc.2017.1613
https://doi.org/10.18294/sc.2017.1613... ) states that educational programs to reduce stigma, allowing discussion, presentation of cases, and the presence of affected people are more effective in this purpose. Considering the above-mentioned principles, the objective of this study is to analyze the effects of the anti-stigma conference on subjectivities, and how this experience permeates the daily practices of those who attend them.
To this end, it was decided to systematize the last three Conferences held during the years 2016 - 2018. This decision was made because during these years important changes were implemented in the methodologies used to develop the selected topics. On the other hand, during this period the Conferences have permanent resources for their development. Finally, the organizing committee considers that after three years it is necessary to reflect on the practices developed, with the purpose of improving the management of these Conferences.
Anti-stigma conference 2016-2018
From a decolonial perspective, it is possible to point out that the Anti-stigma Conferences present characteristics that advance this rationality, among which we can mention a significant variety of participatory methodologies in the teaching and learning process in the reduction of stigma, being a platform to recognize the voice of people with psychiatric diagnosis and, finally, considering stigmatized people as citizens, as subjects of rights.
The above coexists and is configured with the knowledge and practices of rationality inherent to the institutions that organize it; among them, the logic of projectism and technicality to obtain and render the financial and material resources that allow them. In addition, the Conferences are carried out in academic spaces in which the knowledge of experts and legitimate knowledge tend to dominate over popular or experiential knowledge. According to what was described above, a permanent exercise of reflection is required to prevent these conditions from limiting the decolonial exercise in the field of stigma that this activity proposes.
The methodological proposal to address the objective of this study corresponds to a systematization, since it seeks to rescue in a reflexive and critical manner the learning that occurs in a lived experience and to promote transforming praxis of those who participate in the process (Expósito; González, 2017EXPÓSITO, D.; GONZÁLEZ, J. Sistematización de experiencias como método de investigación. Gaceta Médica Espirituana, Sancti Spíritus, v. 19, n. 2, 2017.). This methodology is relevant, since the Anti-Stigma Conferences are a socio-educational activity that produces learning, which circulates among the participants and requires reflection, sharing and organization in order to give meaning, sense and orientation in the steps to follow in the unfinished path in which it is inscribed.
This systematization included the review of a series of documents constructed in the planning, execution and evaluation of the Conferences, by the intersectoral committee, specifically the programs of the Conferences, minutes of meetings, posters, with which the relevant facts of the Conferences during the period 2016-2018, previously presented in this text, were reconstructed.
For the purpose of this research, the opinion of those attending the Conferences becomes relevant, for this reason a qualitative sampling by convenience is used. Some inclusion criteria were established, among which are: having participated in at least one of the last three Conferences held (2016-2018) and representing some of the sectors usually involved in the Conferences (education, health, social protection, group of users and family members).
To form the group of participants, the attendance lists for workshops and the Conferences were reviewed. After identification according to the pre-established criteria, 3 members of the intersectoral committee contacted potential participants by telephone and/or in person to explain the objectives of the research. If they declared their interest and volunteered to participate, an invitation was formalized by email. 36 people were invited, 14 of whom participated in this study and were distributed as follows: 2 education teachers (1 adult education, 1 higher education), 3 university students (2 Psychology and 1 Occupational Therapy), 5 health officials (4 from mental health facilities and 1 from primary health care), 2 representatives of groups of mental health users and family members, 2 social protection personnel (municipal disability office). Thus, all the sectors that usually participate in the Conferences are present in the study. Regarding gender distribution: 4 men and 10 women.
Regarding the participants in this study, it is relevant to point out that they are all Chileans, belong to different age groups, belong to the working class and are mainly women. From a decolonial perspective, these attributes represent the usual characteristics of those who dedicate themselves to the care, studies and interventions of people with psychiatric diagnosis within the institutional framework, therefore their knowledge and practices reflect the current reality of the subject.
A discussion group was used for the production of the information, since this technique allows, through the exchange of opinions and perspectives, to reconstruct individual and collective experiences and, at the same time, the participants can mutually influence each other, to modify their attitudes, perceptions and, thus, to know that they are part of a common sense that is built during the group dialogue (Archenti, 2018ARCHENTI, N. Focus Group y otras formas de entrevista grupal. In: MARRADI, A.; ARCHENTI, N.; PIOVANI, J. Manual de metodologías de las ciencias sociales. Buenos Aires: Siglo XXI Editores, 2018, p. 279-290.). A thematic script was prepared and applied, constructed by the organizing committee and validated by experts, organized around the following themes: strengths and weaknesses of the conferences, methodologies used, lessons learned and incorporation of the themes and methodologies in daily practice. The discussion group was led by 3 members of the intersectoral committee who did not participate in the meeting in order to avoid influencing the results of the study.
The discussion group was audio-recorded and transcribed. The analysis of the information was developed through a content analysis, based on an open coding process (Santander, 2011SANTANDER, P. Por qué y como hacer Análisis de Discurso. Cinta de Moebio, Santiago, n. 47, p. 207-224, 2011. DOI: 10.4067/S0717-554X2011000200006
https://doi.org/10.4067/S0717-554X201100... ), in which the participants’ speeches were grouped according to the sector to which they belong: education (ED), health professionals (S - Salud), social protection (PS - protección social) and community groups (AGC - agrupaciones comunitarias). Subsequently, the information is organized according to the following themes: personal impacts and changes in practices, in order to simplify the information. At the same time, codes are established identifying the sector to which the participant belongs, given that the personal discourse is considered the social discourse that circulates in the different groups. The discourse contains subjective properties, but at the same time expresses the intersubjectivity in which it is possible, thus denoting simultaneously the individuality and collectivity of the person who emits it. Finally, for the interpretative process and to give meaning to the text, the theoretical triangulation of information is considered.
Ethical considerations included the four fundamental principles in the ethics of scientific research: autonomy, justice, nonmaleficence, beneficence. Each participant read and signed an informed consent form, which established the objectives of the research, the confidentiality of personal information, the anonymity of identity and the voluntary participation.
To report the results of this study, a brief synthesis of the participant group’s experience with stigma will be provided, which includes: having experienced stigmatization as a result of a psychiatric diagnosis; for others it was the inefficient and dehumanizing results of interventions in the field of mental health, causing an approach to stigma and its effects on users and work teams. Other participants approach it because of their interest in researching and learning more about the subject and the people who suffer from it. Finally, for others, it is about overcoming their approach to stigma being of a theoretical nature, in order to get to know the person who suffers from it.
Influences of the Conferences on personal change related to stigma
In terms of the themes that emerged in the group and that are linked to the objective of this study, we can point out that the participants of the intersector state that the Anti-stigma Conferences produce an important personal effect, since, as the following speeches point out:
“Seeing how a user related and their experience with health and how they lived the experience with health professionals reverberated in me, not forgetting the other’s perspective”. (S)
“Visualize the real person, not the theory”. (PS)
“It touches my soul, it connects me with real stories”. (ED)
“Being a professional depersonalizes you, it allows you to see the human being behind it”. (S)
“I was operating from one perspective without seeing everything the other had”. (S)
“It gave us the opportunity to express ourselves from different places, to the community in general, and to make it more human and closer to us”. (AGC)
It would imply recognizing the other, as a legitimate, authentic other, humanizing social relations, while at the same time it forces the connection with the own prejudices and stereotypes in order to problematize them. For others, the possibility of telling their own experience of stigma is an act of change, given the liberating nature of the first-person narrative. It is possible to point out that the methodologies used in the Conferences seem to favor the effects on subjectivities, especially those strategies linked to the participation of experts by experience, learning about life experiences and the effects of stigma in everyday life, as the following speeches point out:
“The dynamic nature of the Conferences, theater, other methodologies, increased attention, appeal to emotionality, which makes the changes more real and significant”. (ED)
“The Conferences presented the subject matter from different perspectives, actors and formats, and the message was conveyed in different ways”. (PS)
“Experience, not just academia, is a great strength”. (ED)
According to the findings presented above, the experience of the Anti-stigma Conferences generates a personal effect of sensitization and self-awareness in relation to the stigmatized other, an advance in the reduction of stigma. However, it is not sufficient for a cultural transformation that would produce significant change.
In fact, the same group of participants reflected on this point, and identified several aspects to improve in order to advance in this purpose. First, in some sectors, such as the health sector, it is imperative to motivate other actors, who are linked to people with psychiatric diagnoses, to participate in this space, such as primary care and psychiatric emergency services staff, and others who do not show interest in the subject, as one of the participants points out “it seems that we are always the same people interested in the topic” (S). The conferences should place greater emphasis on the practices and knowledge that circulate in the community, rather than on what the participants define as the rationales of health or of academia.
Another aspect identified by the group is the large number of people who are still outside these spaces, who belong to the intersector and the general public, we refer to citizenship. Regarding the first one, the group considers this a complex issue, since there are differences between the sectors that would make it difficult to work harmoniously, as the following reports indicate: “incorporating the intersector, but in these actors there are also conflicts” (S), “…to open up to the relationships between conflicting institutions, which also have histories” (PS), “…how we impact those who do not go to the Conference” (S). This is relevant because, in spite of what was mentioned above, the Conferences have managed to become a space for intersectoral meetings, which, however, requires more work in terms of convening and broadening the viewpoints present in the same intersector that constitutes them, in order to extend their scope and purposes in a meaningful and dialogical manner.
There is a generalized concern in the group, linked to the need to transcend this experience to other spaces, especially in the field of practices that can be developed and maintained over time and in the daily places of the participants:
“Generation of new daily practices”. (ED)
“Greater development of strategies to achieve the incorporation of the subject in practice”. (S)
“How to generate thematic actions, follow-up, analysis, linkage with participants”. (AGC)
“Maintain the theme over time, so that it is not just a milestone of the Conferences”. (PS)
In synthesis, the anti-stigma Conferences, through the themes and methodologies they offer, not only have a positive impact on the emotionality of the attendees, but also allow them the ability to constructively problematize the Conferences themselves, thinking that the actions they implement are inclusive and they reach the daily lives of those who attend.
Contributions to daily practices
It is important to point out that it may be pretentious to think that people will generate transformative practices that reduce or overcome stigma just by participating in the Conferences. However, it seems to us that setting this horizon allows us precisely to transform the methodologies of the Conferences, as well as to evaluate how to advance towards this purpose, mainly considering the experiences of subjects who are linked to the stigma issue.
The findings of this study indicate that, when speaking of practices, the results focus on the effects that have been produced in the discursive practice in the spaces and places in which the participants habitually operate.
“We managed to incorporate the subject and the reflections within the team, I feel we have been gaining space”. (S)
“Generating noise has allowed changes, discussion and reflections in different spaces”. (PS)
This shows that the issue requires prior dialogue within the different human groups linked to stigma, given that, as the following report points out: “People are the ones who challenge us, they demand the anti-stigma view in our work” (S), institutions would not consider this issue as a central axis of their daily practices, and it is the beneficiaries who place this issue as something primordial. This point is confirmed by one of the participants: “conversations are generated in the teams, at the beginning there is high motivation, but then, due to system issues, we end up doing very few things” (S). The lack of regulations and guidelines on stigma intervention, especially in health facilities, would be one of the main obstacles to incorporating anti-stigma practices, as well as the resistance that may be present in the work teams to implement new approaches and strategies, and may even be showing the resistance that stigma produces in the team members.
The participants identify some efforts that are developed in an intersectoral manner, among which we can highlight:
“Issues associated with stigma are solved with other institutions and with other points of view; this has been difficult to achieve, we invited education to become familiar with mental health. Intersectoral workshops in the classroom, teachers were invited and it has been a constant and difficult work, with long term results”. (S)
“We began to struggle to broaden the vision from the biomedical to the biopsychosocial. We solved it as in derivations and case meetings, every time there was a derivation they had to come and talk to us. We were able to find the reason for that and to be able to base it, and the Anti-stigma Conferences helped us in that”. (S)
“Mobile stand with recovery stories, from the contact to talk about what we do “experts by experience”. (AGC)
These practices are not free of difficulties; however, this volunteering and personal motivation requires the incorporation of others in order to have the necessary strength to be established and consolidated in the intersector. This may also reflect the lack of an intersectoral policy to support initiatives like these, becoming a problem that the Conferences alone do not solve, but a platform for reflection of experiences and discussion is generated, making it a need to be addressed.
To pending tasks... proposals to be developed
The possibility to dialogue about the anti-stigma Conferences with people who have attended them and who represent the intersector has made it possible to define several challenges and proposals that emerge in this search and desire for an inclusive society that guarantees human rights and free of stigmas.
One of them aims at generating innovative strategies and practices. This requires permanent support to the participating institutions, given that public policies and institutional regulations do not have guidelines for addressing stigma. It would be useful to create an intersectoral working group offering advice, training and best practices to the work teams and the community. Another possibility that arose in the group discussion was the generation of a follow-up of good practices after the conferences, in order to provide greater continuity to the anti-stigma work during the year.
One of the ideas generated in the discussion group is that the Conferences should deliver concrete products that the attendees can use to reinforce and transmit the experience to others. For example, videos, newsletters or guidelines for the implementation of anti-stigma practices.
One of the initiatives that arise is that the Conferences are the framework for the training of “anti-stigma” instructors, to train the community, the intersector teams in order to install the issue of stigma in the different institutions and above all in the community spaces, in daily life, to incorporate as many people as possible to raise awareness and educate on the subject.
Finally, although the methodologies used were well appreciated by the participants, some strategies were suggested that, in the opinion of the participants, would improve the impact of the Conferences, such as the implementation of workshops related to the presentations and in smaller working groups.
This set of initiatives are established as concrete suggestions to develop strategies to reduce stigma, to be carried out in institutions, socio-community organizations, social movements and, above all, to be worked together with all these protagonists.
The results of this experience show that the socio-educational actions implemented in the Anti-Stigma Conferences produce subjective changes in those who participate in them. From what Ramugondo (2015RAMUGONDO, R. Occupational consciousness. Journal Of Occupational Science, Abingdon-on-Thames, v. 22, n. 4, p. 488-501, 2015. DOI: 10.1080/14427591.2015.1042516
https://doi.org/10.1080/14427591.2015.10... ) points out, this space generates the raising of occupational awareness, it forges the ability of the attendees to realize the importance of the presence of stigma in themselves and the influence of stigma in their daily lives.
Occupational awareness implies being able to identify and modify those habits and actions that sustain conditions of discomfort, oppression, and social marginalization of diminished and subjugated social groups. In this regard, the experience lived at the Anti-stigma Conferences fosters in the participants the desire to look at and rethink themselves in their relationship with stigma, as Ramugondo and Kronenberg (2015RAMUGONDO, E.; KRONENBERG, F. Explaining Collective Occupations from a Human Relations Perspective: Bridging the Individual-Collective Dichotomy. Journal Of Occupational Science, Abingdon-on-Thames, v. 22, n. 1, p. 3-16, 2015. DOI: 10.1080/14427591.2013.781920
https://doi.org/10.1080/14427591.2013.78... ) describe, to assume the ethical responsibility of being with others and for others, in order to, from there, propose concrete alternatives that go in the direction of reducing and overcoming stigma.
This exercise takes place recognizing that, in order to continue advancing in this purpose, there is still a long way to go, since it is at the level of ideas and it should be transformed into concrete practices. It would mean including in the care and support of people with psychiatric diagnoses not only their personal stories and experiences, but also effectively the theories and practices of care developed by them, regardless of whether they are in health institutions, social protection, social organizations or in the academy.
This study warns of the need for an institutional framework that allows for a regulatory framework to develop actions to reduce stigma, providing technical, human and material resources to sustain these interventions over time. Especially when, in Chile, policies, plans, programs and interventions in the field of mental health are characterized by the primacy of the biomedical model and medicalization as a framework for understanding and treating subjective discomfort (Crespo; Machín, 2020CRESPO, J.; MACHIN, R. Medicalisation in public primary mental health care services in Chile. Social Theory Health, Berlin, 2020. DOI: 10.1057/s41285-020-00130-4
https://doi.org/10.1057/s41285-020-00130... ). On the other hand, their construction lacks the participation, opinion, experience and knowledge of those for whom they are destined (Cea-Madrid, 2019CEA-MADRID, J. C. Locos por nuestros derechos: Comunidad, salud mental y ciudadanía en el Chile contemporáneo. Quaderns de Psicología, Madrid, v. 21, n. 2, e1502, 2019. DOI: 10.5565/rev/qpsicologia.1502
https://doi.org/10.5565/rev/qpsicologia.... ). Finally, as pointed out by Cea-Madrid (2020CEA-MADRID, J. Gasto público en prestaciones hospitalarias y extrahospitalarias en el modelo de salud mental comunitaria en Chile. Saúde e sociedade, São Paulo, v. 29, n. 3, e190893, 2020. DOI: 10.1590/s0104-12902020190893
https://doi.org/10.1590/s0104-1290202019... ), the distribution of funding for mental health care favors hospital and clinical care, to the detriment of community care aimed at social participation and inclusion.
This implies that welfare practices and the social category of the sick person are perpetuated, with the predominance of expert knowledge, making invisible the knowledge, experiences and life histories of the intervention subjects, aspects that together maintain the onto-epistemic matrix that reproduces the stigma on people with psychiatric diagnosis. From what Morán and Tiseyra (2019MORÁN, J. A. P.; TISEYRA, M. V. Encuentro entre la perspectiva decolonial y los estudios de la discapacidad. Revista Colombiana de Ciencias Sociales, Medellín, v. 10, n. 2, p. 497-521, 2019. DOI: 10.21501/22161201.2893
https://doi.org/10.21501/22161201.2893... ) point out, this matrix in the field of mental health would correspond to an enabling colonial modernity. This is characterized by the coloniality of being, that is, the erasure and extinction of identities, which are arbitrarily defined by Eurocentric rationality as abnormal; and by the coloniality of knowledge, which determines that people with psychiatric diagnosis do not contain or produce knowledge, and if they do, they are considered worthless and insignificant. In order to overcome this matrix, it is imperative to rescue the knowledge and identities of people with psychiatric diagnoses. The Anti-stigma Conference is making progress in this area, since it is a platform that allows to know and expose the life stories and experiences around stigma, of subjects who suffer from it and of subjects who have also, at some point in their lives, exercised it. However, the efforts for a cultural change are insufficient and, for this, the participation of society as a whole is required.
According to the findings obtained, and in order to make progress in the aforementioned transformation, it is essential to incorporate the issue of stigma as a basic objective in public policies in the areas of health, education, social protection, labor and other sectors, whose approach should favor and materialize actions from an intersectoral perspective (Cunill-Grau, 2014CUNILL-GRAU, N. La intersectorialidad en las nuevas políticas sociales: un acercamiento analítico-conceptual. Gestión y Política Pública, Ciudad de México, v. 23, n. 1, p. 5-46, 2014.). This issue is still pending in Chile, even in the country’s mental health policies, which show a significant deficit in this regard (Gatica; Vicente; Rubí, 2020GATICA, M.; VICENTE, B.; RUBÍ, P. Plan nacional de salud mental. Reflexiones en torno a la implementación del modelo de psiquiatría comunitaria en Chile. Revista Médica de Chile, Santiago, v. 148, n. 4, p. 500-505, 2020. DOI: 10.4067/s0034-98872020000400500
The reports of the participants in this study show that intersectoriality requires actions from and with the community bases, but, at the same time, these require an institutional framework for their sustainability. Not just any institutionality, but one that is heterogeneous, versatile, collaborative and pluralistic, overcoming the hegemonic rationality of technocracy and expert knowledge that dominates the institutionality of neoliberal states such as the Chilean one.
A profound transformation of institutionalization is important. As Braga (2019BRAGA, C. La perspectiva de la desinstitucionalización: claves de la lectura para entender una política nacional de salud mental alineada con la reforma psiquiátrica. Saúde e Sociedade, São Paulo, v. 28, n. 4, p. 198-213, 2019. DOI: 10.1590/s0104-12902019190125
https://doi.org/10.1590/s0104-1290201919... ) points out, it is necessary not only to deinstitutionalize people with psychiatric diagnosis from the control devices of psychiatry, but it is also fundamental to deconstruct the notion and practices that societies have developed about madness. To this end, the idea of interculturality offered by Albán and Rosero (2016ALBÁN; A.; ROSERO, J. Colonialidad de la naturaleza: ¿imposición tecnológica y usurpación epistémica? Interculturalidad, desarrollo y re-existencia. Nómadas, Bogotá, DC, n. 45, p. 27-41, 2016. DOI: 10.30578/nomadas.n45a2
https://doi.org/10.30578/nomadas.n45a2... ) is presented, indicating that it corresponds to the possibility of building the necessary conditions so that those who have been historically violated are recognized, respected and find themselves in the same conditions of equity for participation and decision making, in a genuine and authentic dialogue. Interculturality implies that people with psychiatric diagnoses should no longer be coopted or silenced by institutional rationalities; on the contrary, they should recover their sovereignty and freedom, so that if there are situations that affect their lives, they can decide about them and not others.
It is important to emphasize that interculturality is an emancipatory social, political and ethical project that seeks to overcome the conditions of oppression that the neoliberal model imposes, even in an overlapping manner and under the guise of inclusion (Zuchel; Henríquez, 2020ZUCHEL, L.; HENRÍQUEZ, N. Una crítica a la interculturalidad desde la interculturalidad crítica. Hermenéutica Intercultural, Santiago, n. 33, p. 85-103, 2020. DOI: 10.29344/07196504.33.2298
https://doi.org/10.29344/07196504.33.229... ). Therefore, it is built from the subjugated social groups, from the bases, in opposition to the functional institutionalism, which exercises its dominion from above, its horizon is the construction of different conditions of being, thinking, knowing, learning, feeling and living (Contreras-Reyes; Calles-Nevada, 2020CONTRERAS-REYES, S.; CALLES-NEVADA, J. Interculturalidad: caminos para la emancipación. CienciaMatría, Santa Ana de Coro, v. 6, n. 11, p. 22-30, 2020. DOI: 10.35381/cm.v6i11.310
https://doi.org/10.35381/cm.v6i11.310... ). Therefore, it is essential that any public policy that assumes the challenge of reducing and overcoming social stigma has the substantive participation of the stigmatized subjects, so that their knowledge and experiences are recovered and become the essential substrate of the design, substantiation, implementation and evaluation of these policies, as a practice to the authentic and legitimate recognition of people with psychiatric diagnoses (Salas, 2017SALAS, M. Usos de [la] locura: hacia el reconocimiento de nuevas lógicas interpretativas del sufrimiento humano. Salud Colectiva, Buenos Aires, v. 13, n. 4, p. 713-729, 2017. DOI: 10.18294/sc.2017.1613
https://doi.org/10.18294/sc.2017.1613... ; Cea-Madrid, 2019CEA-MADRID, J. C. Locos por nuestros derechos: Comunidad, salud mental y ciudadanía en el Chile contemporáneo. Quaderns de Psicología, Madrid, v. 21, n. 2, e1502, 2019. DOI: 10.5565/rev/qpsicologia.1502
https://doi.org/10.5565/rev/qpsicologia.... ). In other words, in order to achieve the full deinstitutionalization of madness, it is essential to transform current knowledge, practices, discourses and regulations by “allocating” the current institutionality.
Another challenge to reduce stigma in the field of mental health is the incorporation of an intersectional perspective, given that stigma is present in social groups that, together with a psychiatric diagnosis, usually present attributes that have been historically oppressed, stigmatized and diminished by the dominant social groups, such as being a woman, being a child, being young or old, being poor, belonging to a race or ethnic group, being a migrant, among others. Assuming the proposal of Sánchez and Gil (2015SÁNCHEZ, H.; GIL, I. Análisis interseccional y enfoque intercultural en el estudio de la ciudadanía y la participación: consideraciones epistemológicas. Diálogo Andino, Arica, n. 47, p. 143-149, 2015. DOI: 10.4067/S0719-26812015000200015
https://doi.org/10.4067/S0719-2681201500... ), regarding the relationship between intersectoriality and interculturality, it is essential to consider the first one as a starting point for the transformative objective of the second one, both views complement each other to address the social complexity that allows stigmatizing practices and the ways to overcome them. This exercise of analysis and understanding of social reality only makes sense when it is constructed from the experience of those who live and are immersed in it. Therefore, it is essential to understand the stigma towards people with psychiatric diagnoses when the experiences surrounding them are related in first person.
This study invites to systematize the multiple good practices that are developed in a local, territorial and collaborative way, with the intention of changing the need to generate evidence for practice, typical of the institutional technocratic model, and to generate evidence based on practice, typical of communities and collectives, in which popular knowledge and lived experience are valued. Thus, this work encourages the possibility of including decolonial perspectives in the field of mental health, which will make visible the effects of the onto-epistemic matrix of modernity present in our culture, institutions and daily practices, in order to expand the horizon of our own individual and collective self, being and doing, generating transformative practices that allow us to achieve a dignified and respectful way of life for all.
The Anti-Stigma Conferences are a platform for socio-community inclusion. They provide a space in which the world of life, the community world, free from institutional rationality, represented by people with psychiatric diagnoses and their families, social and community organizations, and the institutional world, represented by health and educational institutions, among others, converge. Therefore, it is a place that allows the meeting, dialogue and exchange of experiences and learning, from which it is essential to generate practices that build links and alliances that enter the intersector and the communities in a synchronous and respectful way, to install the issue of stigma with and from all the social actors involved, placing experiences, stories and knowledge of those who are stigmatized as the center of confluence.
Given the reports of the participants in this study, it is estimated that, in order to prosper on this path, reciprocity, collaboration, brotherhood, respect and solidarity, among all the values, would advocate the humanization of social and interinstitutional relations. This is a central issue to reduce and overcome stigma, given that to the extent that human relations are humanized, prejudices, stereotypes and discriminations lose space and prominence. Such changes allow spaces to install and deploy the ability to coexist with the difference, building relationships that positively value the knowledge, stories and experiences of people with psychiatric diagnosis.
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- Publication in this collection
03 Sept 2021
- Date of issue
31 Mar 2021
31 Mar 2021
11 May 2021