Abstract

Even though the Federal Constitution of 1988 guarantees indigenous peoples the right to social policies, health care remains a field of tension in their relationship with the State. The need to ensure a participation guideline for the Brazilian National Health System and the inclusion of indigenous people in mechanisms of social control are widely defended. Thus, this article seeks to discuss the meanings of participation and reflect on the challenges of its configuration as social control within the scope of indigenous health. The analysis was based on health conference reports, bibliography related to the subject, and interviews with key actors. The research sought to shed light on the diversity of contexts, actors, and agendas involved in the five indigenous health conferences. We concluded that there was a shift in the conferences and their participation, which moved towards a more bureaucratic performance within the strict boundaries established by the government. Even so, it is essential to value the power contained in the mechanisms of social control, which not coincidentally are the objects of disputes brought forward by the most conservative groups in society. In this sense, it is necessary to value, occupy, and transform these spaces.

Keywords:
Health of Indigenous Populations; Social Control; Social Participation; Health Conferences

Introduction

The fight against the dictatorship in Brazil also proved to be a fight against social inequalities, being expressed in the constitutionalization of social rights such as health care. As a result of a possible consensus, the 1988 Constitution (Brasil, 1988BRASIL. Constituição da República Federativa do Brasil de 1988. Diário Oficial da União, Brasília, DF, 5 out. 1988.) expresses certain ideals, such as universality and equality. For indigenous peoples, this Constitution also represented the recognition of their socio-cultural and territorial rights, overcoming the integrationist and assimilationist paradigm that prevailed in the history of the Brazilian State. At the same time, this legal framework guaranteed the indigenous populations’ right to social policies, which should be formulated and implemented considering their socio-cultural diversity.

However, in order to achieve these ideals, it is necessary to insert citizens in the democratic process of conducting public affairs. To this end, the design proposed in the health care field was based on the community participation guideline. This was reinforced as a principle in Law nº 8,080/1990 and regulated as a permanent body, called “social control,” in Law nº 8,142/1990 (Brasil, 1990aBRASIL. Lei nº 8.080, de 19 de setembro de 1990. Dispõe sobre as condições para a promoção, proteção e recuperação da saúde, a organização e o funcionamento dos serviços correspondentes e dá outras providências. Diário Oficial da União, Brasília, DF, 20 set. 1990a., ^1990bBRASIL. Lei nº 8.142, de 28 de dezembro de 1990. Dispõe sobre a participação da comunidade na gestão do Sistema Único de Saúde (SUS) e sobre as transferências intergovernamentais de recursos financeiros na área da saúde e dá outras providências. Diário Oficial da União, Brasília, DF, 31 dez. 1990b.). These three terms (universality, equality and participation) are key elements for the analysis of health policies in Brazil.

It is important to highlight that “until 1999, the provision of health care services to indigenous peoples occurred sporadically, developed by teams that traveled through indigenous lands providing medical assistance and other specific actions” (Pontes, 2013PONTES, A. L. M. Atenção diferenciada e o trabalho do agente indígena de saúde na implementação da Política de Saúde Indígena. 2013. Tese (Doutorado em Ciências) - Escola Nacional de Saúde Pública Sergio Arouca, Fundação Oswaldo Cruz, Rio de Janeiro, 2013., p. 61). Universality and equality still did not apply to the native peoples. It was only after the approval of Law nº 9,836 in 1999, known as the Arouca Law, that the Indigenous Health Care Subsystem (Sasi), which is a part of the Brazilian National Health System (SUS), was implemented in the form of 34 Special Indigenous Health Districts (Dsei).

The formulation and implementation of the Sasi-SUS went hand in hand with the Brazilian health care reform (Pontes et al., 2019PONTES, A. L. M. et al. Diálogos entre indigenismo e Reforma Sanitária: bases discursivas da criação do subsistema de saúde indígena. Saúde em Debate, Rio de Janeiro, v. 43, p. 146-159, 2019. Número especial 8.), emphasizing the same guidelines. The agenda for consolidating and expanding indigenous participation in the subsystem would then be present at all National Indigenous Health Conferences. This represented an achievement for the struggles of indigenous peoples. The intention was to overcome the Brazilian State’s tutelary perspective, which denies, ignores, and considers indigenous peoples unfeasible as subjects in the decision-making of matters that refer to them. It is worth mentioning that the participation and consultation of indigenous peoples is an international guideline for their relationship with the State, determined in Convention nº 169/1989 of the International Labor Organization (OIT, 1989OIT - ORGANIZAÇÃO INTERNACIONAL DO TRABALHO. Convenção nº 169 da OIT sobre povos indígenas e tribais. Genebra: Conselho Administrativo da Repartição Internacional do Trabalho, 7 jun. 1989.), and promulgated in Brazil only in 2004.

Therefore, the 1^st National Conference on the Protection of Indigenous Peoples’ Health (CNPSI) calls for the “participation of indigenous nations” (Brasil, 1986BRASIL. Ministério da Saúde. I Conferência Nacional de Proteção à Saúde do Índio: relatório final. Brasília, DF, 1986., p. 2). The 2^nd National Health Conference for Indigenous Peoples recommends the structuring of the “social control of the district network, exercised through the District Councils for Indigenous Health” (Brasil, 1993BRASIL. Ministério da Saúde. II Conferência Nacional de Saúde para os Povos Indígenas: relatório final. Brasília, DF, 1993., p. 3). One of the results of this process was Law nº 9,836/1999, which included Article 19-H of Law nº 8,080/1990, considering that “indigenous peoples will be entitled to participate in the formulation, monitoring and evaluation of health policies at collegial bodies, such as the National Health Council and the State and Municipal Health Councils, when applicable.” Two years after the implementation of Sasi-SUS, the 3^rd National Conference on Indigenous Health (CNSI) reaffirms the relevance of social participation in this area, recommending the implementation of local and district councils on indigenous health (Brasil, 2001BRASIL. Ministério da Saúde. III Conferência Nacional de Saúde Indígena: relatório final. Brasília, DF, 2001.). In the 4^th and 5^th CNSI, the term “participation” appears in several proposals with different meanings, and the instances of indigenous social control are reinforced (Brasil, 2006BRASIL. Ministério da Saúde. IV Conferência Nacional de Saúde Indígena: relatório final. Brasília, DF, 2006., ²⁰¹³BRASIL. Ministério da Saúde. V Conferência Nacional de Saúde Indígena: relatório final. Brasília, DF, 2013.).

The structure of this control is consolidated through Ordinance nº 755/2012 by the Ministry of Health, which establishes the Local Councils for Indigenous Health, the District Councils for Indigenous Health (Condisi), and the Forum of Condisi Presidents (Brasil, 2012BRASIL. Ministério da Saúde. Portaria nº 755, de 18 de abril de 2012. Dispõe sobre a organização do controle social no Subsistema de Atenção à Saúde Indígena. Diário Oficial da União, Brasília, DF, 20 abr. 2012.). The Forum is a structure that began in 2006 at the request of indigenous leaders, strengthened by the creation of the Special Secretariat for Indigenous Health (Sesai) in 2010.

The literature on the subject has shown that indigenous participation is a key aspect for the health care model’s consolidation because “the different peoples had to organize themselves in the form of Health Councils, so as to exercise social control” (Langdon; Diehl, 2007LANGDON, E. J.; DIEHL, E. Participação e autonomia nos espaços interculturais de saúde indígena: reflexões a partir do sul do Brasil. Saúde e Sociedade, São Paulo, v. 16, n. 2, p. 19-36, 2007., p. 21). At the same time, indigenous participation in municipal, state, and national health councils is still a challenge for social control within the SUS.

Thus, despite having reached a significant statutory body, we have recently observed serious attacks on the instances of participation in public policies and indigenous social control. Decree nº 9,759/2019 (Brasil, 2019aBRASIL. Decreto nº 9.759, de 11 de abril de 2019. Extingue e estabelece diretrizes, regras e limitações para colegiados da administração pública federal. Diário Oficial da União, Brasília, DF, 11 abr. 2019a.) extinguished hundreds of collegial bodies that were not created by law, and established rules and limitations for different collegial bodies, severely restricting the participation of society in the management of social policies. Among the extinct bodies is the Forum of Condisi Presidents, which conducted regular meetings and was in charge of organizing the 6^th CNSI, which would have been held in May 2019. This Conference was postponed twice, and due to the current context of this pandemic, does not have a new established date. In addition, indigenous social control was also weakened by the Sesai’s expense contingency measures, which planned for only two Condisi meetings in 2020 (Brasil, 2019bBRASIL. Ministério da Saúde. Secretaria Especial de Saúde Indígena. Coordenação Geral de Planejamento e Orçamento. Ofício circular nº 14/2019/Sesai/CGPO/Sesai/MS. Brasília, DF, 31 out. 2019b.).

This task dialogues with a need already pointed out in different studies, such as the one by Teixeira (2017TEIXEIRA, C. L. Participação social na saúde indígena: a aposta contra a assimetria no Brasil? Amazônica: Revista de Antropologia, Belém, v. 9, n. 2, p. 716-733, 2017.), for whom the issue of indigenous participation is central. Souza Lima (2015SOUZA LIMA, A. C. Sobre a tutela e participação: povos indígenas e formas de governo no Brasil, séculos XX/XXI. Mana, Rio de Janeiro, v. 21, n. 2, p. 425-457, 2015., p. 441) states that “since the constitutional text the principle of social participation has become, via several channels, a key element in the political scene, without a doubt an expression of the social movements operating within the framework of the constituent process.” In addition, this author considers that the possibility of indigenous participation “poses different challenges, has limitations,” but at the same time “offers opportunities […] and an increasing autonomy, at least in relation to local powers” (Souza Lima, 2015SOUZA LIMA, A. C. Sobre a tutela e participação: povos indígenas e formas de governo no Brasil, séculos XX/XXI. Mana, Rio de Janeiro, v. 21, n. 2, p. 425-457, 2015., p. 451). This in fact constitutes a double aspect of participation posed for the entire reality of the SUS, since at first it implies an “entry into the field,” to use a term by Bourdieu (2000BOURDIEU, P. O poder simbólico. 3. ed. Rio de Janeiro: Bertrand Brasil, 2000.). This allows the second step to provide access to previously unavailable rights. However, as the sociologist warns us, this entry into the field assumes that the possible responses to problems are previously signaled by the field itself, and the emergence of innovative and differentiated proposals by the State is unlikely (Bourdieu, 2000BOURDIEU, P. O poder simbólico. 3. ed. Rio de Janeiro: Bertrand Brasil, 2000.). It is also because of this finding that:

Therefore, this paper seeks to contribute to the debate on the meanings of participation, and reflect on the challenges of its configuration as social control within the scope of indigenous health. It is part of the research project Health of Indigenous Peoples in Brazil: Historical, Sociocultural and Political Perspectives (CAAE 61230416.6.0000.5240) which, based on a historical-anthropological approach, intends to investigate the trajectory of the actors and current contexts of health policies aimed at indigenous peoples. In this article, we rely on reports from health conferences, bibliography on the subject, and interviews with key-actors conducted using a semi-structured script, which took place between March 2018 and September 2019. These actors, indigenous and non-indigenous, actively participated in the organization of indigenous health conferences and other instances of social control between the late 1980s and early 2000s.

The dialogue excerpts cited in this text were edited to provide a better understanding for the reader, and the names of the participants were also omitted. The interviewees will be identified according to their social role, such as indigenous leader, anthropologist, health professional, and manager. We focus on content analysis that allows to explore the context, actors, and proposals under debate at the conferences, also revealing the relationships between the indigenous health conferences and other instances of social control within the SUS.

Indigenous health conferences

Even though we narrate the Conferences sequentially, it is essential to emphasize that these are absolutely different events. The research sought to shed light on these distinctions, emphasizing the different contexts, actors, and guidelines. In this way, the more general political context helps us understand the dilemmas of indigenous participation in the health field during the Conferences. We also observed the permanent links between instances of indigenous social control and the rest of the SUS.

The interviewees stressed that the 1^st CNPSI, the initial milestone for the creation of the Sasi-SUS (Cardoso et al., 2012CARDOSO, A. M. et al. Políticas públicas de saúde para os povos indígenas. In: GIOVANELLA, L. et al. (Org.). Políticas e sistema de saúde no Brasil. Rio de Janeiro: Editora Fiocruz, 2012. p. 911-932.; Garnelo, 2014GARNELO, L. O SUS e a saúde indígena: matrizes políticas e institucionais do Subsistema de Saúde Indígena. In: TEIXEIRA, C. C.; GARNELO, L. (Org.). Saúde indígena em perspectiva: explorando suas matrizes históricas e ideológicas. Rio de Janeiro: Editora Fiocruz, 2014. p. 107-142.), was negotiated and articulated during the 8^th National Health Conference (CNS). This dialogue took place between indigenous leaders and the event’s organizers, particularly Sergio Arouca - who gave the opening speech at the indigenous conference. In this way, the 1^st CNPSI is a thematic conference of the 8^th CNS, which aimed to acknowledge “that the indigenous way of life has singularities which must be respected and […] that the SUS was not adequately prepared to attend to them” (Garnelo; Pontes, 2012GARNELO, L.; PONTES, A. L. M. (Org.). Saúde indígena: uma introdução ao tema. Brasília, DF: Ministério da Educação: Unesco, 2012., p. 24).

According to one of the interviewees:

Sergio Arouca, in a statement for the Programa de Índio (USP Radio), highlights that the objective of the 1^st CNPSI was to contribute with an indigenous perspective in the health care reform, which shows a close articulation between this reform and the debates on a new health policy for indigenous peoples (Pontes et al., 2019PONTES, A. L. M. et al. Diálogos entre indigenismo e Reforma Sanitária: bases discursivas da criação do subsistema de saúde indígena. Saúde em Debate, Rio de Janeiro, v. 43, p. 146-159, 2019. Número especial 8.). According to Arouca (1986AROUCA, S. Saúde. Programa de índio. São Paulo, 30 nov. 1986. Disponível em: <Disponível em: https://bit.ly/3cHvq9q >. Acesso em: 30 set. 2020.
https://bit.ly/3cHvq9q... , 5min40s):

Cruz and Coelho (2012CRUZ, K. R.; COELHO, E. M. B. A saúde indigenista e os desafios da particip(ação) indígena. Saúde e Sociedade, São Paulo, v. 21, p. 185-198, 2012. Suplemento 1., p. 197) point out that, even though the SUS aims at universality, “the insertion of indigenous peoples in this system occurred in a tense way, in view of the need to adapt the universal structure of the SUS to their specificities.” The relationship between power and rights is composed by the tension between homogenization and specificities. In order to discuss this tension, Garnelo (2014GARNELO, L. O SUS e a saúde indígena: matrizes políticas e institucionais do Subsistema de Saúde Indígena. In: TEIXEIRA, C. C.; GARNELO, L. (Org.). Saúde indígena em perspectiva: explorando suas matrizes históricas e ideológicas. Rio de Janeiro: Editora Fiocruz, 2014. p. 107-142., p. 113) reclaims the idea of “positive discrimination,” in order to “benefit groups harmed by homogenizing social policies.” In addition, the author would impose a necessary “revision of the concept of simple equality, in favor of a notion of ‘complex equality,’ in which gender, race, ethnicity, and other differences must be treated as singularities that demand special treatment in social policies of universal character” (Garnelo, 2014GARNELO, L. O SUS e a saúde indígena: matrizes políticas e institucionais do Subsistema de Saúde Indígena. In: TEIXEIRA, C. C.; GARNELO, L. (Org.). Saúde indígena em perspectiva: explorando suas matrizes históricas e ideológicas. Rio de Janeiro: Editora Fiocruz, 2014. p. 107-142., p. 113).

At the 1^st CNPSI, the elaboration of frameworks for a health policy that would guarantee the specificities of native peoples in the new health care system was made possible by the indigenous protagonism in this event, its final report being based on the proposals by the Union of Indigenous Nations (UNI) (Pontes et al., 2019PONTES, A. L. M. et al. Diálogos entre indigenismo e Reforma Sanitária: bases discursivas da criação do subsistema de saúde indígena. Saúde em Debate, Rio de Janeiro, v. 43, p. 146-159, 2019. Número especial 8.). Ailton Krenak (1986KRENAK, A. Saúde. Programa de índio. São Paulo, 30 nov. 1986. Disponível em: Disponível em: https://bit.ly/3jn4UVi . Acesso em: 30 set. 2020.
https://bit.ly/3jn4UVi... , 1min20s), UNI leader present at the 1^st CNPSI, reports in the Programa de Índio from November 30, 1986 that:

This conference based itself on an analysis by indigenous peoples and indigenists, which stated that the National Indigenous Foundation (Funai) was not addressing the health needs of the indigenous population, in addition to reproducing a medical and curative model of care (Pontes et al., 2019PONTES, A. L. M. et al. Diálogos entre indigenismo e Reforma Sanitária: bases discursivas da criação do subsistema de saúde indígena. Saúde em Debate, Rio de Janeiro, v. 43, p. 146-159, 2019. Número especial 8.). The proposals by the indigenous peoples (UNI, 1988UNI - UNIÃO DAS NAÇÕES INDÍGENAS. Os povos indígenas e o direito à saúde. Saúde em Debate, Rio de Janeiro, p. 8-9, 1988. Número especial.) and their partners (CIMI, 1988CIMI - CONSELHO INDIGENISTA MISSIONÁRIO. Saúde: especificidades do direito dos povos indígenas no contexto das conclusões da 8ª Conferência Nacional de Saúde. Saúde em Debate, Rio de Janeiro, p. 10-11, 1988. Número especial. ) emphasized that health for indigenous peoples involved guaranteeing constitutional rights, such as territorial demarcation, and the recognition of their socio-cultural specificities in health.

The final report of the 1^st CNPSI proposes an indigenous health system that would be a part of the Ministry of Health, with effective indigenous participation in “all moments involving decision-making, formulation, and planning of health actions and services, as well as their implementation, execution, and evaluation” (Brasil, 1986BRASIL. Ministério da Saúde. I Conferência Nacional de Proteção à Saúde do Índio: relatório final. Brasília, DF, 1986., p. 2). Another general aspect was acknowledging the need to think about an indigenous health policy based on primary care proposals.

In 1991, during a process of reformulating the National Health Council, interinstitutional commissions for technical advice were created. These included the Intersectoral Commission for Indigenous Health (Cisi), composed of indigenous and academic representation, as well as governmental and non-governmental entities (Cardoso et al., 2012CARDOSO, A. M. et al. Políticas públicas de saúde para os povos indígenas. In: GIOVANELLA, L. et al. (Org.). Políticas e sistema de saúde no Brasil. Rio de Janeiro: Editora Fiocruz, 2012. p. 911-932.). The convening of the 9^th National Health Conference in 1992 was a warning sign for indigenous peoples and their allies, as it brought forward municipalization as a guideline for the organization of the SUS. Historically, the municipal level is acknowledged as the instance in which the main conflicts of interest occur (Cunha, 2018CUNHA, M. C. Índios na Constituição. Novos Estudos CEBRAP, São Paulo, v. 37, n. 3,p. 429-443, 2018.). As a result, the proposition for indigenous health was to maintain federal management and its organization in Districts, a proposal arising from the discussions on Local Health Systems, which had great legitimacy within the scope of the health care reform (Pontes et al., 2019PONTES, A. L. M. et al. Diálogos entre indigenismo e Reforma Sanitária: bases discursivas da criação do subsistema de saúde indígena. Saúde em Debate, Rio de Janeiro, v. 43, p. 146-159, 2019. Número especial 8.).

The strength of this indigenous mobilization was able to inscribe in the final report of the 9^th CNS that, within the scope of the SUS, the health care of indigenous peoples would be organized through the Dsei, and that another thematic conference on indigenous health be recommended (Brasil, 1993BRASIL. Ministério da Saúde. II Conferência Nacional de Saúde para os Povos Indígenas: relatório final. Brasília, DF, 1993.). Therefore, the convening of the second indigenous health conference is articulated within the scope of the Cisi:

Therefore, in 1993, which was seven years after the first indigenous conference and one year after the 9^th CNS, the 2^nd National Health Conference for Indigenous Peoples takes place. This conference sought to define the principles and guidelines of the Differentiated Care Model for Indigenous Health, which determined the form in which indigenous citizens could access the SUS: through the special indigenous health districts (Brasil, 2006BRASIL. Ministério da Saúde. IV Conferência Nacional de Saúde Indígena: relatório final. Brasília, DF, 2006.). It can be said that the 1986 report focused on what we call “doctrinal principles,” that is, the values that would lay the foundation for the future of indigenous health care. On the other hand, the 1993 report advances in proposing strategies for the implementation of such a health care system.

According to the interviewees, since the start of its preparation the 2^nd Conference was marked by an intense participatory process on behalf of the Cisi, within the scope of the organizing committee, and through the arrangement of regional conferences.

This conference fulfills its role of consolidating the proposal for the indigenous health policy model within the scope of the SUS, particularly pertaining to the structure of the Dsei (Cardoso et al., 2012CARDOSO, A. M. et al. Políticas públicas de saúde para os povos indígenas. In: GIOVANELLA, L. et al. (Org.). Políticas e sistema de saúde no Brasil. Rio de Janeiro: Editora Fiocruz, 2012. p. 911-932.).

The 2^nd Conference also proposes a method for creating the Districts through the Intersectoral Centers for Indigenous Health (Nisi). However, this strategy is not adopted by the administrative body, as is emphasized by the conference organizer:

The strengthening of indigenous representation in the National Health Council is also highlighted by the indigenous leaders at the 2^nd Conference, reinforcing the importance of participation:

This impasse is resolved with the enactment of the Arouca Law (Brasil, 1999BRASIL. Lei nº 9.836, de 23 de setembro de 1999. Acrescenta dispositivos à Lei nº 8.080, de 19 de setembro de 1990, que “dispõe sobre as condições para a promoção, proteção e recuperação da saúde, a organização e o funcionamento dos serviços correspondentes e dá outras providências”, instituindo o Subsistema de Atenção à Saúde Indígena. Diário Oficial da União, Brasília, DF, 24 set. 1999.) -given its name because it was presented by Sergio Arouca in 1994 - and which created the current Sasi-SUS (Cardoso et al., 2012CARDOSO, A. M. et al. Políticas públicas de saúde para os povos indígenas. In: GIOVANELLA, L. et al. (Org.). Políticas e sistema de saúde no Brasil. Rio de Janeiro: Editora Fiocruz, 2012. p. 911-932.; Garnelo, 2006GARNELO, L. Políticas de saúde indígena na Amazônia: gestão e contradições. In: SCHERER, E.; OLIVEIRA, J. A. (Org.). Amazônia: políticas públicas e diversidade cultural. Rio de Janeiro: Garamond, 2006. v. 1, p. 133-160.). According to several interviewees, the bill was forwarded by the 2^nd Conference and based on its report:

Almost 10 years after the 2^nd Conference, the 3^rd CNSI takes place in 2001. This conference is linked to the beginning of the implementation of the Dsei, after the Arouca Law’s approval in 1999, and focused on conducting an assessment - more along the lines of the social control idea - on the implantation of the districts.

As an advancement of the 3^rd CNSI, we can point out the establishment of the demand for indigenous representation in the National Health Council:

In 2006, three years after the 12^th CNS, the 4^th CNSI takes place. This conference was the result of efforts made in response to the recommendation of the 12th CNS for the indigenous conference to continue to happen. It was the first conference under the scope of a progressive federal government. As a result, there were many expectations for the advancement and consolidation of issues historically addressed by the sector. At this conference, 1,228 representatives from more than 100 ethnic groups were present, and from the 34 Dsei. However, at that time a general change occurred in the methodology of the thematic conferences, and the forms of participation and social control gained different characteristics in relation to previous conferences:

The 4^th CNSI takes place during a period of much criticism to Funasa’s performance and the problems faced by indigenous organizations in the execution of services (Garnelo; Sampaio, 2003GARNELO, L.; SAMPAIO, S. Bases sócio-culturais do controle social em saúde indígena: problemas e questões na região Norte do Brasil. Cadernos de Saúde Pública, Rio de Janeiro, v. 19, n. 1, p. 311-317, 2003.). This Conference’s final report systematically reiterates Funasa’s place, pointing out this scenario. In addition, there was a disagreement between the participants that led to the preparation of a parallel report, as stated below:

The 5^th CNSI took place in 2013, seven years after the last indigenous conference and two years after the 14^th CNS, and it was the first held by the Sesai, which was created in 2010. This conference had 1,952 participants, and approved 446 proposals from 36 district stages and 306 local stages, which should serve as a subsidy for the reformulation guidelines aimed at the National Policy on Health Care for Indigenous Peoples.

The time gap in relation to the previous conference once again marks the fragility of institutionalized indigenous participation in health. The 5^th CNSI inherits the methodology change for conducting thematic conferences, with less room for debates and no room for new proposals, in which the statistical parameters prevail over the need for further debate. Unlike the other conferences, in which there was a very broad final plenary session, in the 5^th edition lasted less than two hours, mainly revisiting points articulated by the administrators.

From participation to social control

The health care sector has been an important locus of social participation. Community participation is one of the philosophical principles that guided the construction of the SUS and expressed the desires for rights and democracy. Even though the 8^th CNS is the most important in terms of bold proposals, the first experience of holding a health conference dates back to 1941 (Figure 1). However, at that time the health conference was a consultation forum assembled by the government. There was no participation from society and it was not a mandatory event, these being legislative achievements that were possible after the Federal Constitution, more specifically Law nº 8,142/1990 (Brasil, 1990bBRASIL. Lei nº 8.142, de 28 de dezembro de 1990. Dispõe sobre a participação da comunidade na gestão do Sistema Único de Saúde (SUS) e sobre as transferências intergovernamentais de recursos financeiros na área da saúde e dá outras providências. Diário Oficial da União, Brasília, DF, 31 dez. 1990b.).

It should be noted that, strangely enough, even though the three legal frameworks (Brasil, 1988BRASIL. Constituição da República Federativa do Brasil de 1988. Diário Oficial da União, Brasília, DF, 5 out. 1988., ^1990aBRASIL. Lei nº 8.080, de 19 de setembro de 1990. Dispõe sobre as condições para a promoção, proteção e recuperação da saúde, a organização e o funcionamento dos serviços correspondentes e dá outras providências. Diário Oficial da União, Brasília, DF, 20 set. 1990a., ^1990bBRASIL. Lei nº 8.142, de 28 de dezembro de 1990. Dispõe sobre a participação da comunidade na gestão do Sistema Único de Saúde (SUS) e sobre as transferências intergovernamentais de recursos financeiros na área da saúde e dá outras providências. Diário Oficial da União, Brasília, DF, 31 dez. 1990b.) refer to community participation, the term has been transformed into “social control.” It is not the aim of this article to analyze the conceptual history of this modification, but this change has led to repercussions in participatory practices within the health field, to the point that the idea of participation (which involves, among other things, reflecting on solutions for material problems) became limited to the technical and bureaucratic capacity to monitor the State’s actions. This reduction in the sense of participation crowns the more conservative purposes of neoliberal thinking by transforming each citizen into a kind public affairs manager. Guizardi et al. (2004GUIZARDI, F. L. et al. Participação da comunidade em espaços públicos de saúde: uma análise das Conferências. Physis: Revista de Saúde Coletiva, Rio de Janeiro, v. 14, n. 1, p. 15-39, 2004., p. 19) have already pointed out this conceptual difference, noting that “the population’s participation is presented as being broader than control, as it involves the entire process, starting with the formulation of interventions in the field.” Carvalho (2014CARVALHO, G. C. M. Participação da comunidade na saúde. Campinas: Saberes, 2014., p. 15) notes that participation is “engagement through action, it is the challenge of the proposition.” On the other hand, social control would be one of the participation aspects that is closely linked to the processes of policy implementation in management, evaluation, and control (Carvalho, 2014CARVALHO, G. C. M. Participação da comunidade na saúde. Campinas: Saberes, 2014.). Control ends up functioning as the “essence of citizen participation” (Carvalho, 2014CARVALHO, G. C. M. Participação da comunidade na saúde. Campinas: Saberes, 2014., p. 50), even if the term does not appear in general or SUS legislation, in which we find only “community participation” and“popular participation.”

Another important consideration about this conceptual phenomenon is the fact that the idea of social control necessarily entails action within institutional channels, eliminating other possibilities of activism or pressure. On the other hand, the idea of participation holds within itself a broader power of action that allows different strategies to be reconciled. Essentially, it must be stated that participation is a political act that looks to the future, and social control is a legal act that looks to the past.

In a similar line of analysis, Cruz and Coelho (2012CRUZ, K. R.; COELHO, E. M. B. A saúde indigenista e os desafios da particip(ação) indígena. Saúde e Sociedade, São Paulo, v. 21, p. 185-198, 2012. Suplemento 1.) point to the existence of two forms of indigenous participation, which they call “authorized” or “unauthorized”: “When we refer to ‘authorized’ we refer to official indigenous participation, that is, the one that establishes a specific ‘place’ for indigenous peoples in the Local and District Health Councils and as ‘users’”(Cruz and Coelho, 2012CRUZ, K. R.; COELHO, E. M. B. A saúde indigenista e os desafios da particip(ação) indígena. Saúde e Sociedade, São Paulo, v. 21, p. 185-198, 2012. Suplemento 1., p. 190). On the other hand, unauthorized strategies concern actions of occupation, blocking, “retention of the non-indigenous in the aldeias” (Cruz and Coelho, 2012CRUZ, K. R.; COELHO, E. M. B. A saúde indigenista e os desafios da particip(ação) indígena. Saúde e Sociedade, São Paulo, v. 21, p. 185-198, 2012. Suplemento 1., p. 195), among others. It can be said that we are facing two possible forms of participation: institutionalized participation, which operates in the spaces provided for by law; and the other is instituting participation, which seeks to use untraditional methods to expand the possibility of obtaining rights by “taking from the State,” to quote a famous expression by Bobbio (1992BOBBIO, N. A teoria do ordenamento jurídico. São Paulo: UnB, 1992.).

With regard to institutionalized participation, it is worth discussing its limits, on which Souza Lima (2015SOUZA LIMA, A. C. Sobre a tutela e participação: povos indígenas e formas de governo no Brasil, séculos XX/XXI. Mana, Rio de Janeiro, v. 21, n. 2, p. 425-457, 2015., p. 448) points out that “some of the concrete problems and quite small things” are present and constitute important barriers for entry into the field. Cruz and Coelho (2012CRUZ, K. R.; COELHO, E. M. B. A saúde indigenista e os desafios da particip(ação) indígena. Saúde e Sociedade, São Paulo, v. 21, p. 185-198, 2012. Suplemento 1., p. 192) see an “imposition of participation forms that are inspired by Western criteria, which are very distant from the forms built within the scope of indigenous political organizations, constituting different cultural logics.” Furthermore, Langdon and Diehl (2007LANGDON, E. J.; DIEHL, E. Participação e autonomia nos espaços interculturais de saúde indígena: reflexões a partir do sul do Brasil. Saúde e Sociedade, São Paulo, v. 16, n. 2, p. 19-36, 2007., p. 30) suggest “that the view of the Indigenous on participation and social control is much more about exercising politics than conducting interventions that influence the formulation, execution, and evaluation of public policies for the health care sector.”

In this same line of reasoning, Garnelo, Macedo and Brandão (2003GARNELO, L.; MACEDO, G.; BRANDÃO, L. C. Os povos indígenas e a construção das políticas de saúde no Brasil. Brasília, DF: Opas, 2003., p. 80) claim that there is “an incongruity between the notion of generic representativity demanded by the health care system, and the traditional forms of legitimacy and representativity among indigenous leaders.” Not coincidentally, there is

This author draws attention to indigenous people’s acknowledgement of the need for entering and mastering the “field.” It is in this sense that André Fernando Baniwa highlights the need for indigenous representatives to count on “some strategic partners, that may be technicians who know how things in the government work” (Baniwa; Karipuna, 2012BANIWA, A. F.; KARIPUNA, K. Controle social:o ponto de vista das lideranças. In: GARNELO, L.; PONTES, A. L. M. (Org.). Saúde indígena: uma introdução ao tema. Brasília, DF: Ministério da Educação: Unesco, 2012. p. 216-241., p. 219). In addition, participation implies having knowledge and access to the information necessary for assisting in decision-making.

However, the risk remains that of falling into the clutches of bureaucracy, which would hamper participation. Souza Lima (2015SOUZA LIMA, A. C. Sobre a tutela e participação: povos indígenas e formas de governo no Brasil, séculos XX/XXI. Mana, Rio de Janeiro, v. 21, n. 2, p. 425-457, 2015., p. 444) highlights that if this participation was initially “eminently political and marked by the search for autonomy in dialogue with government agencies,” it eventually acquired “a more technical, bureaucratic, and sometimes figurative character, one more piece in the staging of democratic life,” very much in function of “the authoritarian ways of exercising State power.”

Such considerations are important because they demand a different look at the institutional spaces for participation. What is at stake is the ability of indigenous peoples to self-determine in their relationship with the government.

Final remarks

In this text, we observed the shift of participation towards a more bureaucratic performance within the strict limits established by the administration. If the report of the 1^st Conference held with it a power for radical transformation in the way of thinking about indigenous health, over the years (and conferences) this transgressive possibility started being limited by bureaucratization. Over the last decades, this has permeated the forms of participation in health care (indigenous and non-indigenous), and to a certain extent, the very conception of participation in the health area. It can be said that the set of rules established for the “proper functioning” of conferences serves, at the same time, as a straitjacket and blinker, which homogenizes and pasteurizes all social aspirations into insipid demands. It cannot be ignored that this was a vigorous response from the administration, which unable to respond to social demands, chose to neutralize them. Even so, it is essential to value the power contained in mechanisms of social control, which not coincidentally are the objects of disputes brought forward by the most conservative groups in society. In this sense, it is necessary to value these spaces, occupy and transform them.

Indigenous participation remains an important issue requiring further studies, especially regarding ways of overcoming the challenges inherent to “entering the field” of institutionalized participation. The Brazilian State has a historic debt to indigenous peoples. Therefore, promoting/guaranteeing their participation in the formulation, conduction, and evaluation of health policies is only one step towards overcoming the authoritarian history and tutelary perspective typical of our institutions.

However, indigenous peoples’ political struggle is not restricted to the acknowledgement of their presence and the establishment of a space, but as expressed in the statement by Sandra Benites,⁴2BENITES, S. Speech given during the debate “Demarcação Já: Debate sobre os Retrocessos nos Direitos Indígenas no Brasil.” Rio de Janeiro: Ensp/Fiocruz, May 2017. Mimeographed. “it is necessary to consider what constitutes each people, respecting their well-being - the elements and references that constitute each people.”

References

Publication Dates

History