Abstract

Deafness can be understood from the clinical-therapeutic and the socio-anthropological perspectives. The study aims to perform a genealogical analysis of deafness; that is, an analysis of the practices of knowledge and power in Brazilian health policy. This is a qualitative, documentary study based on the theoretical assumptions of Foucault. Researchers selected 23 documents and conducted eight semi-structured interviews, which were also considered documents, with a non-probabilistic sample using the snowball technique. The genealogical analysis showed that health policies aimed at people with hearing impairment result from the power and knowledge relationships in the field of deafness, in which the medical-pathological discourse is seen as the real perspective, understanding deafness as a disability to be corrected. The socio-anthropological approach, which recognizes the deaf through the perspective of difference and the use of sign language, is a subject discourse that has not found space in health policy. The study highlighted the contradictions between the achievements related to the access to technologies and the propositions of the health sector, whose policy directs its actions exclusively to reach a listening standard, disregarding the multiplicity of deaf individuals.

Key words:
Deafness; Right to health; Health policy; Accessibility; Communication barriers

Introduction

From the 70s of the 20^th century, the world has seen an increase in the discussion in defense of human rights, including people with disabilities, especially in the United States, Canada and European countries¹1 Romero CF. La extensión de los ajustes razonables en el derecho de las personas en situación de discapacidad de acuerdo al enfoque social de derechos humanos. Ius et Praxis 2016; 22(2):227-252.. The evolution and maturation of this movement led to important transformations, including the change of the term “disability”, which came to be understood as a combination between the injuries inflicted on the body and the barriers that prevent full participation in society. This definition was officially adopted in the United Nations Convention on the Rights of Persons with Disabilities²2 United Nations Treaty Collection. Convention on the Rights of Persons with Disabilities. New York; 13 dec. 2006 [Internet]. [cited 2017 nov 27] Available from: https://treaties.un.org/Pages/ViewDetails.aspx?src=TREATY&mtdsg_no=IV-15&chapter=4&clang=_en.
https://treaties.un.org/Pages/ViewDetail... .

Although this conceptual change in the “disability” category, which began to associate bodily limitations to environments with barriers³3 Barbosa L, Pereira EL, Rodrigues DS. LC 142: desafios da avaliação da deficiência em um marco de justiça. Cad Bras Ter Ocup 2017; 25(4):909-915., has proven to be an important political strategy, and even triggered positive advances, it has not yet addressed some specificities. Based on this conception, it would be enough to include people who are deaf in the group of people with disabilities, but many deaf people do not see themselves that way⁴4 Davis LJ. Introduction: disability, the missing term in the race, class, gender triad. In: Davis LJ. Enforcing normalcy: disability, deafness and the body. New York: Verso; 2000.. They call themselves Deaf, being members of a Deaf Community and a cultural linguistic minority, as part of a group that makes use of a visual-gestural language - sign language, which is their main identity characteristic.

In turn, there are two coexisting truth regimes about deafness. A regime associated with the disability from the perspective of the biomedical model, which is centered on the deficit and on the teaching of speech, understanding it as the true speech.

Called by some scholars as a “clinical-therapeutic model”, this perspective understands deafness as an anatomical-physiological deficit that generates hearing loss⁵5 Skliar C. Um olhar sobre o nosso olhar acerca da surdez e das diferenças. In: Skliar C, organizadores. A surdez: um olhar sobre a diferença. 8ª ed. Porto Alegre: Mediação; 2016. p.5-6., which is understood as a pathological sign that raises efforts towards repair, thus generating an intense process of medicalization of deafness⁶6 Rodríguez-Martín D, Rigol-Cuadra A, Crespo-Mirasol E, Maestre-González E. Falta de adecuación del sistema de salud a grupos minoritarios y minorizados: el caso de la Comunidad Sorda. In: Jubany O, Guasch O, organizadores. Intersecciones encarnadas: [Con]textos críticos en género, identidad y diversidad. Barcelona, Editorial Bellaterra; 2020. p.55-84.. This is under the aegis of the same regime of truth which, as reported by Carvalho and Martins⁷7 Carvalho AF, Martins VRO. Anunciação e insurreição da diferença surda: contra-ações na biopolítica da educação bilíngue. Childhood & Philosofy 2016; 12(24):391-415., is that of a body in which something is missing and, therefore, the individual experiences situations of disadvantage and seeks the path of repair. As being deaf is understood as a disadvantage due to the difficulty in establishing communication and, in this perspective, it fits perfectly into the category of people with disabilities.

And there is a second perspective, which is focused on difference, centered on sign language, on the deaf community and culture, and which was called “socio-anthropological” perspective. Most studies based on this perspective of deafness attribute the use of sign language to the development of an identity. Thus, sign language would constitute the deaf subjects and would allow them to share social experiences, beliefs, cultural values and would also favor the connection with the society as a consequence⁷7 Carvalho AF, Martins VRO. Anunciação e insurreição da diferença surda: contra-ações na biopolítica da educação bilíngue. Childhood & Philosofy 2016; 12(24):391-415.^-88 Chaveiro N, Rodríguez-Martin, Faria JG. Educação bilíngue para surdos em Barcelona-Espanha. The Specialist 2020;41(1)..

Officially, there are 9,722,163 people with hearing impairment in Brazil, although it is not known exactly how many are sign language users⁹9 Brasil. Secretaria de Direitos Humanos da Presidência da República, Secretaria Nacional de Promoção dos Direitos da Pessoa com Deficiência. Cartilha do Censo 2010: pessoas com deficiência. Brasília; 2014. 29p.. A large international investigation showed that there were 1,700,000 sign language users in Brazil in 2007¹⁰10 Haualand H, Allen C. Deaf people and human rights. World Federation of the Deaf and Swedish National Association of the Deaf. Finland; 2009. 71 p.. Although it may be outdated, this number shows that the number of people who use the Brazilian Sign Language (BSL) is not so insignificant to the point of being invisible to public health policies. Being included in the agenda of governmental priorities is not necessarily a quantitative parameter, but the asymmetries of power-knowledge that make up the social body.

Power is not a fact alone; power is, above all, “a mode of action of some over others”, which only exists associated with acts. According to Foucault¹¹11 Foucault M. O sujeito e o poder. In: Dreyfus H, Rabinow P. Michel Foucault: uma trajetória filosófica: para além do estruturalismo e da hermenêutica. Tradução: Carrero VP. Rio de Janeiro: Forense Universitária; 2010.

In this context, when the other involved in the action is the deaf, as subjectivity constituted as an individual-mode or as a group collective of subjection, over which power is exercised, this relationship has resulted in (linguistic, communicational and attitudinal) barriers, expressed by the denial of rights.

When these barriers are observed in the context of health, they result in a threat to a fundamental right. These obstacles are related to the difficulty in accessing information in sign language or other communication strategies, due to the professionals’ lack of knowledge about the reality of the deaf, their culture and rights and the lack of accessibility to services¹²12 Rodríguez-Martín D, Rodríguez-García C, Falcó-Pegueroles A. Ethnographic analysis of communication and the deaf community's rights in the clinical context. Contemporary Nurse 2018; 54(2):126-138.. In this context, they are denied the right to information and autonomy in making decisions about their own health.

However, there is a contradiction (or not), as the Brazilian Health System designed two policies involving people with hearing impairment throughout its history - the Brazilian National Hearing Health Care Policy (PNASA)¹³13 Brasil. Ministério da Saúde (MS). Portaria nº 2.073, de 28 de setembro de 2004. Instituiu a Política Nacional de Atenção à Saúde Auditiva. Diário Oficial da União [Internet]. 28 set. 2004. [acessado 2017 set 3]. Disponível em: http://bvsms.saude.gov.br/bvs/saudelegis/gm/2004/prt2073_28_09_2004.html
http://bvsms.saude.gov.br/bvs/saudelegis... , in 2004, and the Care Network for People with Disabilities(RCPCD)¹⁴14 Brasil. Ministério da Saúde (MS). Portaria nº 793, de 24 de abril de 2012. Institui a Rede de Cuidados à Pessoa com Deficiência no âmbito do Sistema Único de Saúde. Diário Oficial da União [Internet]. 24 abr. 2012. [acessado 2017 set 3]. Disponível em: http://bvsms.saude.gov.br/bvs/saudelegis/gm/2012/prt0793_24_04_2012.html.
http://bvsms.saude.gov.br/bvs/saudelegis... , in 2012.

This Care Network was developed mainly aiming to expand access and qualify care, as a result of the Brazilian National Plan for the Rights of Persons with Disabilities - Living Without Limits, which was published in Decree No. 7.612/2011, and which intended to promote the full and equitable exercise of the rights of people with disabilities, through the development of policies, programs and actions.

From this context, a question arises: Are these policies aimed at the population of people with hearing impairment respecting their singularities? In other words, when something is developed aimed at this population, is there a consideration on the part of the population that uses sign language? Therefore, this article aims to carry out a genealogical analysis of deafness, investigating the practices of knowledge and power in the context of the Brazilian health policy.

Methodological route

This study refers to part of the analysis carried out in the study entitled Noise and silence: a genealogical analysis of deafness in the Brazilian health care policy¹⁵15 Vianna NG. Ruídos e silêncios: uma análise genealógica sobre a surdez na política de saúde brasileira [tese]. Campinas: Universidade Estadual de Campinas; 2018.. This is a qualitative and documentary study, including a genealogical analysis, based on the theoretical assumptions of Michel Foucault. Genealogical analysis consists of showing the origin of power relations, as well as resistance, following the connections of events between historical facts¹¹11 Foucault M. O sujeito e o poder. In: Dreyfus H, Rabinow P. Michel Foucault: uma trajetória filosófica: para além do estruturalismo e da hermenêutica. Tradução: Carrero VP. Rio de Janeiro: Forense Universitária; 2010.. The study focuses on forces that are managed and that, in their interrelationship, produce facts that try to impose themselves as universal truth.

Foucault¹⁶16 Foucault M. Vigiar e punir: nascimento da prisão. Tradução: Ramalhete R. Rio de Janeiro: Vozes; 2014. 302p. reports that there are also discourses of truth in the exercise of power, which emerge from it and, simultaneously, reinforce it.

It is relatively simple to identify the knowledge that presents itself as truth, as it is on the surface and circulates freely in the social body, subsidizing and reinforcing power. However, underneath these powers, there is also knowledge, which is overshadowed and repressed, and associated with resistance, subjugated and inherent to every exercise of power. Subjugated knowledges are, then, blocks of historical knowledges that were present in the functional and systematic ensembles, but which were masked, and the critique was able to reveal their existence by using, obviously, enough, the tools of scholarship ^17:8.

In order for the subjugated knowledge to come out of the shadow in which they were placed by the true discourse, and in order to identify the emergence of power relations, the genealogist must select documents where the events materialized. Details and facts that are ignored and not included as history, being neglected and rejected, are relevant to the genealogy¹⁸18 Foucault M. Nietzsche, a genealogia e a história. In: Foucault M. Microfísica do poder. Org. e trad. Roberto Machado. Rio de Janeiro: Graal; 2009. p. 15-37..

Thus, the researchers selected 13 normative documents and 10 informational documents (as shown in Graph 1) to carry out the genealogical analysis. The choice of documents was guided by the following criteria: 1) Federal laws and decrees that concern people with disabilities; 2) Federal laws and decrees related to deafness and sign language; 3) Directives of the Ministry of Health concerning people with disabilities; 4) Directives of the Ministry of Health on People with Disabilities directly related to deafness; and 5) Publications by the Federal Government (Secretariat of Persons with Disabilities and the Ministry of Health) related to persons with (hearing) disabilities of an informative and/or evaluative nature. In addition, the researchers carried out eight semi-structured interviews, which were also considered as documents (Graph 2). Thus, the selected sample was non-probabilistic using the snowball technique, in which the initially selected subjects suggest other participants. The inclusion criterion was to be sociopolitically involved in some phase of the development of health and/or education policies aimed at people with disabilities, such as leaders of social movements, managers, representatives of rehabilitation services, members of councils and committees who shared information on the topic through oral history.

From a temporal point of view, the genealogical analysis of deafness in the context of health policy considered the creation of the Unified Health System (SUS) in 1988 as a starting point, as well as the policies aimed at people with hearing loss that were developed as a result.

This study was approved by the Research Ethics Committee of the School of Medical Sciences at Universidade Estadual de Campinas (FCM/UNICAMP) (CAE No. 51771815.2.0000.5404; Opinion No. 1.468.353) and carried out in accordance with Resolution No. 466/2012. The participation was voluntary and all participants signed the Free Prior Informed consent.

Results and discussion

Practices of knowledge and power about deafness in Brazilian health policy

When the SUS was developed, the Ministry of Health (MS) began to implement the first actions aimed at people with disabilities in the following decade. With regard to hearing loss, specialists, especially otorhinolaryngologists and speech-language pathologists from a university center focused on the oral approach, provided advice to the federal government

From the end of the 19^th century until the middle of the 20^th century, the oral approach was the privileged pedagogical approach in deaf education, being incorporated by speech-language pathologists as a therapeutic approach throughout history. Associated with the discourse of a truth that understands deafness from a clinical-therapeutic perspective, the objective of this approach is to integrate the deaf child to the hearing society, through the development of the oral language¹⁹19 Vieira CR, Molina KSM. Prática pedagógica na educação de surdos: o entrelaçamento das abordagens no contexto escolar. Educação e Pesquisa 2018; 44..

The following illustrates the participation of these specialists at the Ministry of Health (MOH) in the 1990s.

(...) there were two advisers: an otorhinolaryngologist, who performed surgeries Bauru, and that woman (...) who was a speech-language pathologist, and she is responsible for the table. She was in favor of the oral approach and oralization, and the otorhinolaryngologist assisted us to include cochlear implants in the directive. So, she developed the table with her group (from the Universidade de São Paulo-USP/Bauru). Afterwards, we met with the Brazilian Society of Speech-Language Pathology and Audiology, which made some recommendations, and we took it out of the hands of otologists and otorhinolaryngologists. But the table was developed by speech-language pathologists (Manager nº 2 of the Ministry of Health).

As a result of the work developed by this team, especially by the Speech-Language Pathologists, the table reported above is the “Table of Procedures, Drugs, Orthoses, Prostheses and Special Materials”, through which the first procedures for people with hearing impairment were included in the SUS. In academia, the speech-language pathologist and her group mentioned are known as a group that promotes the oral approach at USP Bauru.

This same group also provided huge contributions to the PNASA¹³13 Brasil. Ministério da Saúde (MS). Portaria nº 2.073, de 28 de setembro de 2004. Instituiu a Política Nacional de Atenção à Saúde Auditiva. Diário Oficial da União [Internet]. 28 set. 2004. [acessado 2017 set 3]. Disponível em: http://bvsms.saude.gov.br/bvs/saudelegis/gm/2004/prt2073_28_09_2004.html
http://bvsms.saude.gov.br/bvs/saudelegis... , created in 2004, from differences in professional categories linked to rehabilitation, especially speech-language pathologists.

There was nothing organized and structured, but from this policy on, there was the possibility of enabling services such as Hearing Rehabilitation Centers. These Centers started to receive funding from the MOH to develop diagnostic and therapeutic care, screening and monitoring of hearing²⁰20 Escarce AG, Lemos SMA, Carvalho SAS. Profile and work satisfaction among professionals of hearing care health network. Audiol Commun Res 2015; 20(2):96-103., benefiting many Brazilians, especially the elderly.

The policy also recommended actions that should be developed in primary care, such as: hearing health promotion, prevention and early identification, informational and educational actions, family guidance and referral to rehabilitation services¹³13 Brasil. Ministério da Saúde (MS). Portaria nº 2.073, de 28 de setembro de 2004. Instituiu a Política Nacional de Atenção à Saúde Auditiva. Diário Oficial da União [Internet]. 28 set. 2004. [acessado 2017 set 3]. Disponível em: http://bvsms.saude.gov.br/bvs/saudelegis/gm/2004/prt2073_28_09_2004.html
http://bvsms.saude.gov.br/bvs/saudelegis... .

PNASA was a turning point regarding access to hard technologies²¹21 Merhy EE, Feuerwerker LCM. Novo olhar sobre as tecnologias de saúde: uma necessidade contemporânea In: Merhy EE, Baduy RS, Seixas CT, Almeida DES; Júnior HS, organizadores. Avaliação compartilhada do cuidado em saúde: surpreendendo o instituído nas redes. Rio de Janeiro: Hexis; 2016. p.59-72., which are capable of providing auditory stimuli to those who do not have this possibility. There are only a few health systems in the world that fully finance this type of resource. Graph 1 shows the growing evolution in the number of hearing aids provided in the period in which PNASA was in force, until the RCPCD replaced it in 2012.

The researchers investigated to understand the socio-historical context that resulted in the creation of PNASA and found that there had to be an opening in the governmental agenda so that the issue of auditory rehabilitation could be prioritized. This emergency condition was due to the presence of an advisor, who worked in the Technical Area of Health of Persons with Disabilities at the MOH, who, in addition to being a speech-language pathologist, had close ties with the Workers’ Party (PT), the political party that ran the federal government at the time. Therefore, the focus on Speech-Language Pathology was present, not only in the MOH, but also within the Presidential Palace itself.

This advisor, and the power relations in which she was involved, collaborated to develop a favorable scenario so that the “speech-language pathologist’s claims” could be met, providing the necessary support to put into practice the proposals of the group that advised the MOH.

Although less expressively, the interviewees’ reports show the participation of two institutional places - the Brazilian Association of Audiology and the Brazilian Society of Speech-Language Pathology and Audiology, whose approaches were similar to the oral approach of the group of professionals from the university center.

In the midst of the historical facts that are characterized as an emergency condition of PNASA, it is necessary to question the knowledge about deafness that specialists, the scientific society and the technical consultants of the MOH use to support their practices. The following illustrates and reinforces the continued use of the clinical-therapeutic approach on deafness.

At that time, in the early 2000s, there were disputes far beyond the field of health, such as in education, where the socio-anthropological approach on deafness resonated much more easily and sign language was introduced into classrooms. This approach, which can be understood as part of a subjugated knowledge, did not get support in health, except for a still small part of speech-language pathologists, who would gradually incorporate this approach into their practices, thus adopting bilingualism as a work approach.

Bilingualism arises from the socio-anthropological approach on deafness, as a pedagogical approach that supports the exposure of deaf children to sign language in a school environment, so that it can be naturally acquired and as a first language. Simultaneously with the acquisition of this language, the approach promotes the learning of the auditory-oral language as a second language, in its oral and/or written modality.

The publication of a law - the BSL Law, enacted in 2002 -, which recognized the Brazilian sign language as another Brazilian language, put pressure on a set of practices defended by the health field, represented by specialists who directly influence the development of policies aimed at this discussion. In this context, it is not surprising that the MOH was against the bill that recognized Libras as the main means of expression for the deaf. This position was based on arguments that not only defended access to hearing repair technologies and the development of an oral ability, but also promoted the idea that sign language was an obstacle to language development.

Therefore, PNASA is the result of knowledge-power practices guided by the truth regime on deafness, which has been understood as a true discourse for centuries. It was developed with a clearly defined target audience in mind: the hearing impaired; that is, people who do not listen, but who have to listen; people who don’t speak, but have to speak. Anyone who does not meet this policy, even if they have a hearing loss, is not a target of the policy. The health policy developed for people with hearing impairment reiterates a subject produced in the 18^th century and assumes an excluding profile.

The development of PNASA was also a response against a knowledge that was gaining more and more space, which was evident with the approval of Law No. 10,436/2002. In addition to the policy itself, the field of health strategically delimits the territories that belong to it and to education.

In this way, all the necessary actions to normalize the hearing impaired subject are assigned to health, while the sign language is not included in health, as a prohibited territory through which sign language would not be allowed to pass. In order not to simply deny sign language, which would be politically incorrect, the health field reinforces that another field (education) is responsible for it.

Policies aimed at people with disabilities result in the inclusion of two types of subjects in normative documents: the hearing impaired, which is the responsibility of the health area, and the deaf, which is the responsibility of the education area. Thus, PNASA ended up reinforcing this binarity and individuals were forced to adapt to these norms, even if they wanted to transit through the two spaces.

This study does not criticize the SUS offering access to technologies capable of assisting oral abilities, as it should be noted that this access is a positive point to be valued in the Brazilian system. However, it should be noted that the policy does not recognize that there is a group of people who communicate through sign language within the segment of people with hearing impairment. There are many reports of deaf people who are sign language users and who are approached by professionals trying to convince them to undergo implant surgery or fitting a hearing aid to the detriment of sign language.

Despite pointing out that PNASA was a policy created disregarding the multiplicity of deaf individuals, it must be recognized that it allowed for meeting a set of needs of a significant part of the population. Despite this, the investment was disproportionately higher in hard technologies. On the one hand, hearing losses were being more identified and there was an increase in access to hearing aids; on the other hand, there was very little guarantee of comprehensiveness of care, as it often ended in the fitting of the device.

It should be noted that comprehensiveness is understood as something that can only be achieved through the knowledge of people’s health needs, which concern their living conditions, access to all health technology²¹21 Merhy EE, Feuerwerker LCM. Novo olhar sobre as tecnologias de saúde: uma necessidade contemporânea In: Merhy EE, Baduy RS, Seixas CT, Almeida DES; Júnior HS, organizadores. Avaliação compartilhada do cuidado em saúde: surpreendendo o instituído nas redes. Rio de Janeiro: Hexis; 2016. p.59-72. capable of improving and prolonging life, to the creation of bonds between the user and the professionals, and to the autonomy in the way of living life.²²22 Cecílio LCO. As necessidades de saúde como conceito estruturante na luta pela integralidade e equidade na atenção em saúde. In: Pinheiro R, Mattos R, organizadores. Os sentidos da integralidade na atenção e no cuidado à saúde. Rio de Janeiro-São Paulo: IMS/UERJ-ABRASCO; 2001. p.113-26.

One of the main criticisms refers to the failure to create mechanisms to ensure comprehensive care, such as to overcome difficulties in accessing therapeutic monitoring carried out by speech-language pathologists in order to promote language development, since this service focuses on the same services where hearing aids are provided, often far from people’s homes.

The integration between the points of care, the guarantee of comprehensiveness and access for all citizens, with the allocation of rehabilitation services according to local reality and demand, are still goals to be achieved²³23 Maciel FJ, Friche AAL, Januário GC, Santos MFN, Reis RA, Neto RO, Lemos SMA. Análise espacial da atenção especializada na Rede de Cuidados à Pessoa com Deficiência: o caso de Minas Gerais. CoDAS 2020; 32(3):1-7..

Therefore, the fragmentation of care is a challenge to be overcome not only with regard to people with disabilities, but in the entire health system. Thus, the SUS went through a process of reassessment of the organizational model, culminating with the adoption of Health Care Networks (RAS) in 2010 as the main strategy to achieve comprehensiveness²⁴24 Tofani LFN, Furtado LAC, Guimarães CF, Feliciano DGCF, Silva GR, Bragagnolo LM, Andreazza R, Chioro A. Caos, organização e criatividade: Revisão integrativa sobre as redes de atenção à saúde. Cien Saude Colet 2021; 26(10):4769-4782..

The RCPCD was developed from the implementation of this new organizational model in Thematic Networks, which is reported by Louvison²⁵25 Louvison MCP. Regionalização dos sistemas de saúde como resposta às desigualdades territoriais: um debate necessário. Cad Saude Publica 2019; 35(Supl. 2):1-3. as networks that provided greater discussion between those involved, but that do not face important structural problems.

As in the preparation of the PNASA, the Ministry of Health had the collaboration of external consultants and scientific societies for the implementation of the RCPCD; however, it also included a broader and more diversified group of professionals in the area - the Advisory Committee on the Implementation of the RCPCD.

On the other hand, although this committee including representatives of several universities and Rehabilitation Centers to prepare the policy was subdivided into Working Groups (WG), the “Hearing WG” did not have the same diversity of members, as shown below.

This Committee had the opportunity to advance in a discussion that the previous policy did not address, even with the presence of new social participants from other institutional places. By analyzing the guidelines of the new policy described in the Hearing, Physical, Intellectual and Visual Rehabilitation Instruction²⁶26 Brasil. Ministério da Saúde (MS). Rede de Cuidados à Pessoa com Deficiência no âmbito do SUS: instrutivos de reabilitação Auditiva, física, intelectual e visual. Brasília: MS; 2014. 78 p., prepared by the technical staff of the MOH together with these specialists who, at that time, were no longer restricted to the USP-Bauru group, it could be noticed that the content is quite similar to that of PNASA, with a few updates.

The guiding documents still focus on access to hard technology, describing in a very detailed way criteria related to evaluation; indication, selection and fitting of the device according to the age of onset, type and degree of hearing loss; periodic monitoring of the equipment in the individual’s daily life, aiming at possible electroacoustic adjustments and offering guidance on the use and handling of the device.

Graph 2 shows the increase in access through the growing number of hearing aids provided from 2012, when the RCPCD was developed.

The documents also show the need for speech-language pathology therapy, but with no detailed guidance on this practice, reporting only that it should be guided by a “comprehensive rehabilitation”, without further clarification.

On the other hand, countless pages are dedicated to hearing aids, while only a few lines are dedicated to “speech-language pathology monitoring” and nothing is said about the different therapeutic possibilities of working with the deaf, including the use of sign language. This finding could have no significance if the power relations and knowledge-power practices that permeate the field of deafness were unknown.

It is quite relevant that rehabilitation has not been questioned and that there has not been an analysis of the therapeutic approaches that can be adopted in the Hearing Rehabilitation Centers. The MOH maintained the same posture and the same approach on deafness. If at that time the MOH avoided discussing this issue because it could cause a lot of “controversy”, it could be explained by being one of the spaces where the true discourse on deafness would resonate most.

On one occasion, this was questioned in the Intersectorial Commission for the “Health of Persons with Disabilities” of the Brazilian National Health Council (CNS), which had a speech-language pathologist who works from a bilingual perspective as a member. The pressure reverberated into the “Hearing WG”, but it was quickly neutralized.

However, more recently there has been a change in the updated version of the Hearing, Physical, Intellectual and Visual Rehabilitation Instruction²⁷27 Brasil. Ministério da Saúde (MS). Rede de Cuidados à Pessoa com Deficiência no âmbito do SUS: instrutivos de reabilitação Auditiva, física, intelectual e visual. Brasília: MS; 2020. 124 p., which for the first time recognized the Law No. 10,436/2002 and suggested the need for the professional team, together with the family, to evaluate the possibility of including sign language in the therapeutic process.

The forces surrounding health policy are not pressured by the deaf movement, but by the category of rehabilitation professionals, more specifically by speech-language pathologists who promote bilingualism.

Disputes between professionals who promote the oral approach and bilingualism seem not only to give more visibility to sign language users within politics, but also to guarantee spaces for action. Regardless of the speech-language pathologist’s approach, the two options always have a therapeutic character that aims to restore a standard, which is still not in the agenda of the social movement of the deaf.

However, the attempt to question the therapeutic work with the deaf in order to include sign language came from speech-language pathologists who promote bilingualism, and not from the deaf movement. This is explained by the fact that the deaf who are sign language users do not recognize themselves in this agenda and, therefore, do not put pressure on the MOH, as shown below.

Cochlear implant surgeries that are also linked to RCPCD should also be investigated, especially because the therapeutic follow-up of users can be conducted in Hearing Rehabilitation Centers.

In addition, the Guidelines add that Rehabilitation must take place in the patient’s city of residence, aiming to overcome the geographic barrier that is often at the root of the discontinuity of care; but, on the other hand, it does not create concrete management mechanisms to allow this and for the longitudinality of care to occur.

In this sense, both those who undergo cochlear implant surgery and those who conduct a device fitting often have their care interrupted when they most need it. In this approach, the health industry that has the SUS as a large consumer market is the only part that does not take risks of having “losses”, since the SUS is totally dependent on the suppliers. As shown in Graph 3, millions of Reais are invested annually in hearing aids from public funding.

Of course, there is economic interest from a medical equipment business industry, which is also guided by the medical-pathological discourse of deafness. One of the deaf participants was convinced that the practices of professionals, especially doctors, are guided by a logic driven by economic interests.

Although there are professionals who work guided only by this type of interest, the researchers do not believe that the knowledge-power practices exercised by professionals are exclusively for this reason, as it would be a very reductionist and unfair perspective. In order to analyze this issue, the researchers decided to turn to two intercessors, Deleuze and Foucault, who question the reasons why the exercise of power can be explained.

This perspective leads us to the possibility that, when subjecting themselves to a medical-pathological approach, professionals actually desire a “cure” for deafness, through all possible resources. Ultimately, these desires are perfectly aligned with the interests of companies, which are increasingly profitable due to the group of professionals in perfect harmony with them.

In addition, factors such as the daily exclusion experienced by the deaf in society and the distance in the teaching of professionals from the deaf population and their culture lead to a real lack of knowledge of their health needs, contributing to policy makers, as well as the advisory team, to adopt practices of knowledge power that are not in line with the comprehensiveness of health care.

Conclusion

The knowledge and power practices associated with deafness inevitably affected public policies, which are the product of one or several governments, impacted by numerous forces. In this study, it was possible to find that health policies - the Brazilian National Hearing Health Care Policy and the Care Network for People with Disabilities - were guided by a regime of truth about deafness that has been constituted as a true discourse for centuries and that does not recognize that the deaf person may have different characteristics, with different needs that may include or not access to technology.

References

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