Socio-historical representations of a disease: a study of posters from campaigns against Hansen’s disease during the second half of the twentieth century

Abstract

This article analyzes the use of iconographic sources in the context of educational campaigns to combat Hansen’s disease from a socio-historical perspective at four points in time: the 1950s, 1960s, 1980s, and 1990s. Four posters are analyzed to identify the elements (textual, visual or graphic) used to develop discourse on this disease and those it affected and transformations and permanences in this discourse, as well as to verify how they became part of a narrative of institutional memory linked to public health in the state of São Paulo. These were produced by various public health institutions and are part of the Health Campaign Poster Collection held by the Emílio Ribas Public Health Museum.

Health campaigns; Social representations; Leprosy; History of public health; Image analysis

Resumo

Este artigo analisa o uso de fontes iconográficas no contexto das campanhas educativas para o combate à hanseníase numa perspectiva sócio-histórica em quatro momentos: décadas de 1950, 1960, 1980 e 1990. São analisados quatro cartazes para identificar os elementos (textuais, visuais ou gráficos) utilizados para elaborar um discurso sobre a doença e os doentes; suas transformações discursivas e permanências, além de verificar como se tornaram parte de uma narrativa de memória institucional ligada à saúde pública paulista. As fontes estudadas fazem parte da coleção Cartazes de Campanhas de Saúde, cujos itens foram produzidos por diversas instituições ligadas à saúde pública e integram o acervo do Museu de Saúde Pública Emílio Ribas.

Campanhas sanitárias; Representações sociais; Lepra; História da saúde pública; Análise de imagens

Between social history and the history of public health: an introduction

This article investigates the social representation of leprosy (today known as Hansen’s disease), considering a historical perspective on practices and representations of this disease and those it affects in the field of public health. Part of this analysis began during the doctoral research of one of the authors and was broadened in this study, using the current name for this disease as a starting point. As an object of historical research, the shift from leprosy to Hansen’s disease signals a change in the regime of historicity ( Hartog, 2014 ), in which new meanings¹were attributed to the narratives linked to this topic, to the patients, to the illness itself, and even to the practice of medicine, seen as a social practice.

These approaches are part of a historical process within a larger series of symbolic and/or political disputes for the right to an official narrative in different contexts. In considering one of these to analyze the sources selected, we can observe how the disease was viewed by public health institutions in São Paulo as well as how it was likely seen by the rest of the population. The shift in the name used for this disease during the 1960s indicates the need at that time to change how it was seen. Within this context, the physician Abraão Rotberg (2002) played an important role when he proposed the new name in an attempt to erase what he defined as “leprostigma.” With this change, it was believed that unlike leprosy all the imagery created around it, Hansen’s disease would be “a disease like any other,” with treatment and control as long as it was diagnosed early enough. Beyond changing the name of the disease and related words (leper, leper hospital, leprologist etc.), the social reach of these discussions is also clear, as they resulted in Brazilian Federal Decree 76.078 of 1975 ( Neris, 2014 , p.127) and laid the foundation for treatment in the future (Bonfim, Bastos, 2009, p.190).

It is also relevant to investigate the discussion in the medical community about the prophylaxis adopted in relation to this endemic disease (and disputes inside and outside the field) as well as the development and production of new medications, but also regulation and execution through laws and ordinances. These approaches can also permit reflection on the role of science in granting legitimacy to practices and discourses, signaling the medical community’s lack of intellectual autonomy compared to the state, as Massako Iyda (1994) has observed. The government in turn utilized a social vision constructed around eugenic scientific knowledge based on “factuality, neutrality, and universality”²( Stepan, 2005 , p.16-17) to justify extremely violent prophylactic measures. From this same perspective, Ivan Ducatti (2007 , p.309-310) reiterates that

science can also serve to legitimize ideological interests of the bourgeois class, since it is able to multiply its views and impose this thought on various domains and levels of society. This is the most effective way through which value commitments are presented with the intention of neutrality and indisputable objectivity, appealing to the authority of science, in whose name the adoption of certain measures and courses of action is recommended.

The case of leprosy/Hansen’s disease, seen as part of a historic social process, is no exception. In the dissertation by Yara Monteiro (1995) , historiographic studies on this topic gained one of the first landmarks in approaching the stigma related to this disease, such as the operation of quarantine institutions, discourses on science, legislation of the time related to this illness, and the role of the press in publicizing these measures, but also the intricate power relationships between the São Paulo state government and institutions and between the institutions and their patients or internees. In this way, Monteiro paved the way for future studies by providing a new regime of historicity within which other historical agents would be included, such as those patients who were forcefully hospitalized and consequently marginalized and made socially invisible, behind the walls of leper colonies in the countryside of Sao Paulo.

To advance this discussion, new approaches, periodizations, sources, and methodologies were utilized to diversify the production of scientific knowledge and its social role. This made it possible to establish relationships between a certain event (in this case, health campaigns to fight Hansen’s disease) and the broader scenario in the country. For this reason, they should not be seen as opposing elements within a historical process, but rather as complementary, a “game of scales” between what is known as micro and macro-history ( Revel, 1998 ).

Within the field of public health, the planning and regulation of health activities are studied, along with educational campaigns and other measures to combat endemic and epidemic diseases over time. If “disease permits knowledge on social structures and changes,” it also requires the “constitution of fields of knowledge and disciplines” (Hochman, Armus, 2004, p.13-14). Along these lines, the observations by Mota and Marques (2018) on the history of the present time reiterate the relevance of reducing the distance between social history and the field of public health, whose foundations were solidified through two concepts: the social determination of diseases and the process of health work. We also must consider the political dimension, because since 1988 health has been considered a constitutional right in Brazil (Mota, Marques, 2018, p.25). This right is the result of efforts to overcome the losses caused by authoritarian regimes that ruled the country at different times during the twentieth century, most notably the dictatorship that began in 1964. Later, we will return to some circumstantial aspects of public (and collective) health to assist us in understanding the analysis. First, we shall present a brief but necessary background to provide context about the disease and the activities undertaken to face it in the state of São Paulo.

During the first decades of the 1900s, the state government adopted compulsory isolation in an attempt to stop the disease from advancing inland. A network of five colonies (in the cities of Bauru, Casa Branca, Guarulhos, Itu, and Mogi das Cruzes) was created to hold these people. This structure served as a reference for other states and came to be known as the “Paulista model,” which included three procedures: compulsory reporting of infectious diseases, compulsory internment of the sick, and taking their children into institutions known as preventoriums ( Monteiro, 1995 , p.217). A series of strategies and activities were considered, planned, and carried out in order to implement this system based on the influence of discussions around notions of eugenics which were in vogue in the early twentieth century. According to ideas of regenerating and improving the populations in the country, a specific narrative was created about leprosy: it was a threat to the future.

Besides compulsory isolation of these patients (and the consequent dismantling of their families), the possibility of sterilizing them was also discussed, so they could not transmit the disease to their children, for example. According to Quevedo, Serres and Santos (2013, p.346), the reasons for sterilization were “eugenic” (to free future generations from the disease, even though it is not hereditary), “prophylactic” (separating the sick from the healthy), and “social” (to avoid spending on the children of people with Hansen’s disease, who would be separated from their parents). Although sterilization was ultimately not carried out due to religious and/or moral considerations, the existence of a debate on the subject clearly shows the reach of eugenics into the intellectual community linked to health, particularly physicians and sanitarians.

Since that time, eugenics affected or influenced the history of medicine, of the family, of maternity, of the population, of criminology, of public health, and of social well-being. ... Eugenics was important because it occupied the cultural space in which social interpretation took place, and because it linked new and powerful images of health as a question of heredity and race ( Stepan, 2005 , p.15).

In the case of Brazil, eugenics was an important tool for advancing the political plan to achieve a modern and prosperous nation (which required a healthy population suited to serve as its work force) according to European ideals, even though it did not enjoy the same resources or population characteristics. Meanwhile, these institutions (leper colonies, preventariums, and dispensaries) “could provide electoral advantages,” showing populist aspects of the government at that time, “demonstrating the state’s concern with a marginalized group” (Quevedo, Serres, Santos, 2013, p.346).

Massako Iyda (1994 , p.15-16) weaves together some considerations regarding public health from a perspective of regulating the population without actually facing the serious health problems that existed. This involved developing a mechanism to persuade the community and create legitimacy so that this exercise of power could go unquestioned, as an extension of state activity with structure intended to grant it not only the legitimacy but especially the “authority” to act. Despite the (alleged) discourse of neutrality and scientific rigor, until the mid-twentieth century public health was essentially a political instrument of totalitarian governments.

Within this context, health education and care for children became a new vehicle for this structure for social control, which was expanded and strengthened from the mid-1920s ( Iyda, 1994 , p.50-51). The reforms that took place at that time included an Inspectorship for Health Education and Health Centers, whose work leaned toward health policing, considering the obligation to report some diseases (such as leprosy) and the modus operandi of the Inspectorship for Leprosy Prophylaxis. Transformed into a department ten years later, it became known for its often-aggressive approach to those with leprosy and their families. The Leprosy Prophylaxis Department (DPL) had a physical and bureaucratic structure with activities “more intended to expand power than to improve the population’s living conditions” (p.52). By approaching socioeconomic aspects linked to community health as merely “technical” factors, the DPL gradually broadened its institutional power so that

health activities were never priorities outside of certain specific situations for Brazilian society. This was not due to financial factors, which were only coincidental, but rather economic and political aspects (including international factors, as we shall see). The lack of priority essentially results from the structural nature of public health... ( Iyda, 1994 , p.70).

This scenario gradually changed as medications emerged which could combat or at least stabilize the damage caused by the disease, resuming the debate on the efficacy of the prophylaxis utilized up to that point. In terms of discourse (and, therefore, in constructing meaning), other communication activities and strategies were employed such as the production of technical publications, pamphlets, and educational films,³and seminars on radio programs broadcasted in the 1940s, for example. In 1947, the Secretary of Education and Public Health (Secretaria de Educação e Saúde Pública, SESP) began to form partnerships and incorporate activities linked to social activities, and became the Secretary for Public Health and Social Assistance (Secretaria de Saúde Pública e Assistência Social, SSPAS). In the case of leprosy, improvements in the medications to treat this disease and discussions within the medical community led to questioning of the real effectiveness of the São Paulo model, since obligatory quarantining of the sick was not able to reduce case numbers, and also encumbered public coffers.

At the end of Second World War, eugenic ideas lost strength and began to be seen negatively due to the crimes committed against humanity, thus creating a new regime of historicity. One outcome of this change can be seen in the alterations in the isolation institutions in 1949. Leper colonies were no longer places for gathering (and hiding) the sick, but became “sanitariums,” a place to treat or heal illness ( Porto, 2018 , p.16). This process of change in health and sanitary discourse and practice culminated in Brazilian Federal Decree 968 of 1962, which established the legal end of obligatory isolation, and the shift in nomenclature from leprosy to Hansen’s disease during that same decade.

Beyond the impact of the disease on the population, it is important to investigate its potential causes (as well as its epidemiological profile and area of incidence) and the socio-historical junctures in which these and other elements are located in order to deepen our understanding of epidemics and endemic diseases. From another perspective, we can verify not only the patient’s health conditions but how institutions linked to health and the governments also viewed them. This movement can reveal important clues about the social transformations caused by epidemics, as well as the population’s poor living conditions due to the lack of basic sanitation, for example. Sick bodies also reveal the impact of social differences (Revel, Peter, 1995), in other words, the way the body is cared for or neglected, represented or ignored is also a relevant symptom of the inequalities that exist in Brazil.

These mechanisms of producing discourse (and of silencing opposition) are also visible during the military dictatorship that ruled from 1964 to 1985, when some of the posters in the collection analyzed in this study were produced. Ideally, we can identify the demands served to align with and maintain representativeness in the field of public health as part of a power scheme in which public health is a means, not an end. An echo of this authoritarian mentality can be seen in everything from expressions that invoke a military context to describe disease (and the sick) such as “an enemy to be fought” rather than the result of lack of access to basic sanitation; the responsibility for getting sick is attributed to the individual, thus “shifting the problem away from the social axis” ( Ducatti, 2007 , p.312). These elements reproduce the hallmarks of thinking founded on eugenics which was present in the campaigns to combat leprosy/Hansen’s disease.

Along with new treatment possibilities came changes in the discourse,⁴in an attempt to realign political and ideological projects. What was important at that time was to change the previous view of a “biblical curse” that resulted in the isolation and social exclusion of its victims to something that could be considered treatable. In this way, the political and symbolic capital exercised by the Department of Leprosy Prophylaxis (Departamento de Profilaxia da Lepra, DPL) was maintained, with investment in sanitary health campaigns to establish an “association between a plan to medicalize society and the development of social protection laws” ( Neris, 2014 , p.124). This effort would lead to a new perspective on health in the following decades.

Exploring the sources and their characteristics: a look at education and health campaigns

While studies in the field of the history of health that involve iconographic sources are not commonplace, they are also not unheard of. In one, Myriam Bahia Lopes (2000 , p.21) analyzed different images to investigate “how questions related to the health of Rio de Janeiro residents transformed,” examining “hallmark images of campaigns related to health and reshaping the capital, Brasília [which were] incorporated by recent historiography without critique” (p.21). More recent work on polio campaigns (Silva, Pôrto, 2010) and the movement away from mental asylums (Espírito Santo, Araújo, Amarante, 2016) which looked at publicity posters has helped expand the number of studies on sanitary education activities. In this sense, thinking about historiography on the educational campaigns about Hansen’s disease which considers this type of document is relevant not only for the field of social history but also for the history of health, especially public health in the state of São Paulo.

Beyond providing information to the population, the posters presented temporal and discursive elements which provide clues about their circulation and potential meanings. It is also important to observe their various supporting elements and formats (posters, pamphlets, publicity films etc.) as tools for legitimizing discourse that was in line with a project (political and/or ideological) at different times and in different junctures ( Ducatti, 2007 ; Iyda, 1994 ). This is particularly true for the institutionalization and regulation of health activities that took place during the government of Getúlio Vargas, for whom public health was an important base for social policy.

Images have been used to disseminate information about disease prevention and precautions in a strategy that was adopted since the establishment of public policies in the state of São Paulo at the start of the last century. They were essential in educational campaigns, as in the case of the National Campaign to Combat Leprosy (Campanha Nacional de Combate à Lepra, CNCL), which was intended to “modify the strategy to control the disease and thus eliminate isolation in leprariums from the reality of Brazilian medicine” ( Maciel, 2007 , p.256). The establishment of an epidemiological campaign by the National Leprosy Service (Serviço Nacional de Lepra, SNL) made it possible to maintain guidelines to face the disease, despite the need for changes related to the prophylaxis used up to that time. The intention was to standardize health actions according to a centralizing and hierarchical principle, as well as to redefine the areas served during the “pilot” stage⁵in Rio de Janeiro which were later extended to the rest of the country in 1959. According to the definition by Laurinda Rosa Maciel (2007 , p.257), the campaigns followed

a strategy of military understanding ... temporarily structured, as in autonomous organizations, but with specific and very well-defined activities. In everyday practice, it becomes a specialized and centralized service, with its activities directed toward eliminating or eradicating a specific disease which has been defined as a social or economic problem in a certain society.

Within this context, the educational posters were intended to orient the population so they could identify symptoms and risk factors and seek out health services, if necessary. This set of activities made it possible to foresee the government’s interest in disseminating these discourses related to prophylaxis to face the endemic, but also its own role. At the same time, these measures helped solidify other social representations of illness. The images, and particularly the posters, are important for us to understand these textual and visual narratives and require special attention during analysis; after all, they are not an exact representation of reality but rather a vehicle emphasizing a certain aspect of reality so that it can be (re)signified. They constitute a record that only has meaning in relation to the context of its production.

What can an image tell us?

Martine Joly (2005) proposed defining and discussing the role of images as a tool for disseminating a discourse which in turn contains a series of counter-discourses, often establishing a power relationship. This author utilized semiotics and discourse analysis to address images, since this “makes it possible not only to reconcile the multiple uses of the term ‘image’ but also address the complexity of its nature, among imitation, features, and convention” (p.11). There is a “complementarity” rather than an opposition between image and language. But images are loaded with “significance” (in other words, a constructed meaning, an interpretation), and consequently serve a power project that is structured through the relationship between signifier, referent, and signified: in other words, what is perceived, what is represented, and the intended meaning (p.35). This meaning can also be perceived in its “materiality” (such as size and type of paper, for example) and “plasticity” (like the use of colors and proportions, font size and effects like italics, bold, upper and lower case, and other graphic resources), but also in its circulation and target audience.

Just as we consider the role of photography [and images] as a historical source and its documentary value, especially in the area of public health, here we must consider the role of communication to structure our analysis. Communicating information, as already noted by various authors, is something vital for health management, and the ability of different audiences to understand the message is essential to obtain the desired results (Silva, Pôrto, 2010, p.149).

This process takes place via the enunciation (context) and what is enunciated (how it is interpreted), making it possible to identify its use. Just as important as the context in which it is produced is its “social place of origin,” in this case public health institutions (Espírito Santo, Araújo, Amarante, 2016, p.458). For this reason, images cannot be seen as mere illustrations, since they are “covered in meaning” and contain the social (political and institutional) hallmarks of who produced them (their “emitter”) in such a way that lends them legitimacy among others, including in how they intend to be seen and how the recipient chooses and sees them ( Orlandi, 2008 , p.460). The same occurs with graphic elements, to the extent that they help to organize “formal aspects including image, text, layout, choice of means of communication, format of the material and of the forms of circulation are part of the devices of enunciation” (Espírito Santo, Araújo, Amarante, 2016, p.460).

The iconographic documents selected for this article are part of the “Health Campaign Posters” (“Cartazes de Campanhas de Saúde”) collection at the Emílio Ribas Museum of Public Health (Museu de Saúde Pública Emílio Ribas, MUSPER), a significant place for the memory of public health in São Paulo and its preservation. Created in 1965 (and called the Emílio Ribas Historical Museum at that time), it was intended to preserve the memory of that physician. In 1979 the collection was renamed to include the memory of institutions in São Paulo linked to public health and its users, including documents and exhibits (Fernandes, De Senne, Machado, 2012). The material nature of the building itself can also be considered an important aspect of its importance as a space for memory that is present in the public space.

The “Health Campaign Posters” collection comprises 6,370 items including roughly forty posters related to Hansen’s disease which were consulted; these depicted various moments during the health education campaigns related to this disease. Despite the diversity and relevance of these sources, the study was restricted to this group of forty posters to comply with the editorial directives of this publication, particularly limits on the number of images in articles. The items in the group of analyzed materials were produced by several institutions linked to the area of public health to assist in health education on Hansen’s disease at different times. In analyzing these sources, the visual and graphic elements were considered (measurements, use of colors, features and highlighted letters) along with their origin (institutions, partners, and sponsors of the campaigns), in other words, the source of these discourse.

The selection criterion was the identification⁶of changes in the graphic and textual discourse elements in different periods (1950s, 1960s, 1990s, and 1984) that evidenced alterations in social representations of Hansen’s disease and those affected by it over the years. An exception is the poster in Figure 4 , which is related to a commemorative event and will be described in more detail below. Despite the number of iconographic documents linked to Hansen’s disease in the collection we studied, it was difficult to find posters produced and distributed in the 1970s, considering the lack of details that made it possible to definitively date certain items. This absence can also be seen as a strategy to silence the disease, since it involves a period during which the military dictatorship and censorship were more severe. Even today, despite educational campaigns to address Hansen’s disease, there is still a worrying silence related to the epidemiological data in Brazil.⁷

Figure 4
: Poster publicizing the São Paulo State Hansen’s Disease Archive (60 anos..., s.d.)

The posters were developed to be hung in places accessed by the population served in health clinics, in approximately A2 format (420mm x 594mm) generally used for this type of printing, since it makes content more visible; an exception is the poster in Figure 4 . Additionally, various visual and graphic resources (illustrations and photographs) were used to reinforce the intended meaning and message: the importance of identifying symptoms and seeking treatment from a public agency. Although they are not precisely dated (since they could have been hung in various places), their age can be estimated, as the posters indicate the institutions responsible and partners in the municipal, state, or federal spheres. Some examples include the aforementioned Department of Leprosy Prevention, the SNL, National Health Education Service, and the Ministry of Health, Secretary of Health, or more recently, the Brazilian Unified Heath System (Sistema Único de Saúde, SUS). Just as the disease has been described differently over time, the alteration (or inclusion) of certain institutions can also provide clues, since this indicates changes in governments, public policies and partnerships, and care management, for example.

The posters produced by the SNL and DPL during the 1950s allow us to identify certain agendas linked to the topic at that time, such as discrimination against the children of patients and identifying symptoms to detect new cases. We note that in that context there was a need to reinforce the importance of this hospital structure as an ally in combating this endemic disease. Here the meaning shifts: from “battling the enemy” to a fight involving all of society in the field of public health ( Porto, 2018 , p.74).

The graphic elements in the poster in Figure 1 (color, illustrated, 622mm x 454mm), which was produced by the National Health Education Service in the 1950s, help orient reading of the information it contains, like the phrase highlighted in red in capital letters “ A lepra não é hereditária ” (“leprosy is not hereditary”) in the upper left corner, showing this is the most important information and thus should be seen/read first. Immediately below is an illustration of three girls playing at the beach, in other words, in a public place, indicating that there is no need to worry about their presence, with the phrase “ Os filhos dos doentes de lepra são crianças perfeitamente sadias ” (“the children of patients with leprosy are perfectly healthy children”) reinforcing this message ( Porto, 2018 , p.75-76). This change of discursive elements signals an important aspect with relation to the social representation of these children, although the forced separation of their families by the state is not mentioned. Proof of the influence of eugenics on a sanitarian mentality of social control at that time can be found in the following passage:

Figure 1
: Poster: “A lepra não é hereditária” (“Leprosy is not hereditary”), from the National Health Education Service campaign (A lepra..., s.d.)

The end of the zenith of eugenics in Brazil coincided, in São Paulo, with the end of Salles Gomes’s term at the DPL, which was considered the most authoritarian and cruel for patients (Lemos, 1945). Improvement in the conditions for patients in the asylums resulting from the departure of the DLP’s director reinforced the thesis that hygienist and eugenist ideas permeated health policy in São Paulo until the mid-1940s (Gorgulho, Barata, 2013, p.194-195).

Authoritarianism was maintained during the military dictatorship, to the extent that, according to Priscila Pais (2017 , p.147-148), “the social function of the sector was intimately related to the plans to develop the country and overcome poverty, serving to support the economy.” In this situation, a “highly bureaucratic, authoritarian, and repressive” structure was established, within which public health was expected to carry out its role in the government’s development plans. In presenting “positive” data (which were actually bad, since they were poorly interpreted or taken out of context, when they were not omitted or censored), the military government solidified its discourse on the improvements achieved under its management (p.162). There were efforts to show that the health situation was under control, even despite severe outbreaks of meningitis during the first half of the decade (which were ostensibly censored) until the situation got out of control by the beginning of the following decade. With this disastrous strategy, it became clear that

the epidemic exposed the structural problems in the São Paulo health care system, insufficiencies that already existed before meningitis spread through the city, due to how medical care had historically been systematized: disorganization, lack of hierarchy, of accessibility, regionality, and communication between agencies etc., at the same time that this illness deepened these problems by demanding more efforts from an already exhausted and disorganized structure, just as any other disease that appeared with similar strength could have done ( Pais, 2017 , p.167).

This same procedure can be seen in relation to care for patients with Hansen’s disease: hiding the emotional, social, and physical side effects suffered by those who lived in asylums or protective institutions, as well as the lack of public policies to reinsert these people into society.

The first popular health movements emerged in an attempt to face these problems that had been silences; these movements were comprised of users who demanded dignified treatment alongside the sanitarian movements to establish preventive activities in health in the late 1960s ( Pais, 2017 , p.164-169).

The poster in Figure 2 (color, illustrated, 455mm x 619mm), which was produced by the Bahia State Secretary of Health and the Department of Sanitary Dermatology in the 1960s, shows the influence of the São Paulo model on other states, including in their discourse. It also reinforces the “threat” of transmission to family members if treatment is not promptly sought. It is the only poster that directly mentions sulphones, the first drugs used in treatment of this disease. The illustrations reiterate the importance of identifying the symptoms to seek treatment (which is simple, involving medication) and where this treatment can be obtained. In other words, the threat discourse continues, although it is less intense. It should be noted that the term hanseníase (Hansen’s disease) appears in other contemporary posters in this collection, signaling important changes during the mid-1960s when the DPL was extinguished by the Secretary of Health at that time, the physician Walter Leser, who was also responsible for the reforms in the Secretary of Health. This restructuring took place between 1967 and 1971 (Bonfim, Bastos, 2009, p.309) and was meant to meet the following priority objectives of the government of São Paulo at that time:

Figure 2
: Poster for the National Health Education Service’s anti-leprosy campaign (Campanha..., s.d.)

To place the state administrative apparatus at the height of the economic, social and cultural development already achieved by the São Paulo community, because in fact the gap between the public and private areas in the field of administration was growing ever more marked (Bonfim, Bastos, 2009, p.309).

To do this, four areas of joint action were created: the deliberative area (composed of the Secretary of State, State Health Council, and Technical Administrative Council); the executive area (formed by the four community health coordinations, medical-hospital assistance, mental health, and specialized technical services); the advisory area (information and analysis, planning, technical norms, and advisory services); and the auxiliary assistance area (general administration for carrying out activities). This restructuring was intended to integrate services at the local level, via the local health center, and to centralize regulations related to caring for the population in order to obtain “better public health technique, higher yield, and lower cost” (Bonfim, Bastos, 2009, p.310). However, other activities were being eyed, such as visitor and sanitation aid work to implement preventive measures, since “the integration of factors such as the body and the environment is where the determinant causes of disease reside” (p.310). Although this restructuring took place during the dictatorship, the secretary at that time perceived a direct relationship between health and living conditions, or rather between the lack of health and neglect.

Since the real minimum wage translates the population’s acquisition capacity, more significantly expressively in the lower income classes, it is inevitable that its reduction will quantitatively and most notably qualitatively impair nutrition conditions. On the other hand, it is proven that malnutrition is not only a direct cause of death but also a predisposing and aggravating factor for infectious diseases, substantially increasing morbidity and fatality of these diseases (Leser cited by Bonfim, Bastos, 2009, p.329).

In the 1970s, the hospital structure created and maintained to receive and serve patients and their children (the colonies, and later sanitariums and hospitals, educational spaces and preventariums, as well as the dispensaries) all came under the supervision of the Hospital Assistance Coordination (Coordinadoria de Assistência Hospitalar, CAH). These structural and prophylactic changes were intended to keep up with international recommendations, considering that treatment was possible, theoretically replacing⁸compulsory quarantine with care provided in dermatology dispensaries linked to the Department of Sanitary Dermatology and the Secretary of Health.

In the years following the restructuring of the Secretary of Health, some posters began to show people with lesions and deformities in an attempt to call the attention of the population to the severe damage the disease could cause if neglected. Patients with more severe effects were seen as social pariahs and therefore discriminated against and persecuted, reinforcing their social stigma. Later, these images (considered “appeals”) were replaced by more “discreet” ones showing more subtle signs and marks, which also helped modify how patients were seen socially. They came to be represented as having a treatable and curable illness, despite difficulty keeping it under control, even today ( Porto, 2018 , p.79); still, from an epidemiological point of view little had changed in relation to the growing number of cases and the few resources devoted to more decisively dealing with this epidemic.

In the poster in Figure 3 (color, with photograph, 448mm x 596mm) produced in the 1990s, other graphic elements can be observed, such as the yellow logo highlighting the phrase “ Hanseníase tem cura ” (“Leprosy can be cured”), in addition to the participation and/or support of other institutions, such as the Movement to Reintegrate Persons Affected by Leprosy (Movimento de Reintegração de Pessoas Acometidas pela Hanseníase, MORHAN), the State Secretary of Health (SES), the National Council of Municipal Health Secretaries (CONASEMS), and international entities such as WHO and the Pan American Health Organization (PAHO). The institutional support to amplify this discourse reiterates the seriousness of the endemic and difficulty controlling it in the country, since leprosy is one of the diseases considered neglected. According to the WHO definition, these are caused by infectious agents or parasites and considered endemic in low-income populations. They also “present unacceptable indicators and reduced investments in research, drug production, and control” ( Valverde, 2013 ).

Figure 3
: Poster “ Você diria que eu já tive hanseníase ?” (“Would you say that I had leprosy?”), from the Hansen’s Disease Campaign Poster collection at the Emílio Ribas Museum of Public Health (Você..., s.d.)

Here we can see a different approach that makes the disease something (almost) “imperceptible” and easy to resolve. This premise is found in the question “would you say that I had leprosy?” accompanied by a smiling woman. But the most important aspect is the lack of symptoms, scars, and sequelae. In other materials from this campaign,⁹and later, others linked to this disease, a new element appears: partnership and/or sponsorship by the pharmaceutical industry, represented by the inclusion of a laboratory logo. These signs show us who is producing the discourses on the disease as well as who helps legitimize them, considering their various interests, and consequently different degrees of symbolic negotiation.

The debates around the changes in nomenclature, procedures and approaches, and discussions on the role of public health professionals led to the emergence of a group of intellectuals who proposed considering public health as a right that should be accessible to all. According to Marcelo J. Souza e Silva, Lilia B. Schraiber, and André Mota (2019), the collective public health movement was intended to “intertwine the scientific field with policy for the democratization of the state during the military dictatorship.” As a result, integration between health and medical reforms was proposed to achieve the principle of integral health. A mentality developed and established based on tools “borrowed” from the social sciences tools and humanities.

Collective health can be defined as a field of knowledge production aimed at understanding health and explaining its social determinants, as well as the scope of practices directed primarily to its promotion, in addition to being directed to the prevention and care of ailments and diseases, focusing not only on individuals but above all social groups, therefore, collectivity (Vieira-da-Silva, Paim, Schraiber, 2014, p.3).

Reflections by this group of intellectuals and professionals focus on the “centrality of the state in constituting objects of study” in a multidisciplinary manner to think about disease beyond its biological factors, but also in its socio-historical aspects. There is also questioning of its role in civil society and its “repercussions in the health/disease process of populations” (Pereira Neto, 2001, p.9). A new system of historicity then arises in which the discourse contains a meta-discourse, so that prejudice is a social disease. In this sense, leprosy was no longer seen as a curse or punishment for which the patient was responsible, but instead as resulting from difficulty accessing preventive measures, the results of social inequality suffered by the poorest individuals. However, the collective project to “end leprosy” continued without achieving its objectives, considering its (permanent) social invisibility, despite the worrying current statistical data. This is a sign that even with a name change, prejudice remains to the point that other educational campaigns are needed, with a wide variety of approaches.

From one discourse to another: a poster as a place of memory

Unlike the others, the poster in Figure 4 (color, illustrated, 287mm x 636mm) publicizes the exhibition commemorating “60 years of the São Paulo State Leprosy Archive” and “100 years of public health” at what was then the Institute of Health in the second half of 1984. Besides its relation to memory (remembering the highlighted 60 years of the state’s leprosy archives and 100 years of public health), we can observe the need to maintain political, historical, and symbolic importance to society. Places of memory thus attempt to become an instrument of remembering, but also are intended to renew, resignify, and reiterate their symbolic power, establishing a debate about their performance and relevance among their peers.

This collection is part of an archive for another project, namely preserving the history and memory of public health in São Paulo, with discourse that helps to establish its own narrative. While the posters state the meanings for the educational campaigns, they also do so in relation to the memory and history of public health, when they became part of the MUSPER collection. Museums by definition are places for memory, and consequently develop narratives that form the center of various disputes in narrative history ( Nora, 1993 ) based on official and/or institutional discourse. These spaces hold a “will” for memory, in other words, a construction and representation of social processes, conflicts, and their various interests that always act together. They are directly linked to the formation of an identity and to the idea of belonging, and exist only as long as their importance is recognized; for this reason they struggle for visibility through different discourses and symbolic negotiations. In this sense, the poster in Figure 4 can be seen as part of the memory of mobilizing (and the narrative and visibility disputes) public health professionals, considering the context of leprosy and public health in São Paulo.

Within this setting, debates about reformulating health services became more accentuated and centered around prevention. New professionals, technicians, and specialists were trained in a progressive perspective that views health as the result of a “series of policies and actions from different sectors of state administration, all intended to create healthy living conditions for the population” ( Pais, 2017 , p.178). This conception gradually solidified, changing the perception of the social function of health when the importance of normative actions for basic sanitation, housing, education, and nutrition in achieving and maintaining the health of the populations was reinforced. These connections by working and study groups (among other activities) led to the project that is currently the SUS, in pursuit of the motto “Democracy is Health,” which emerged at the National Health Conference in 1986. It is no coincidence that this was the first conference where civil society participated to discuss the needs of public health users. Since that time, health is no longer considered an economic and legitimizing state apparatus and has become the right of every Brazilian citizen, whose form of care must be “prioritized by the function carried out as part of the daily life of the population” ( Pais, 2017 , p.153).

Gustavo Tarelow (2018 , p.157) points out that this new historicity regime also utilized historical studies on medicine and public health that led to a change in discussions about the practice of medicine.

In this sense, Social History, in proposing a critical dialog with memorialist approaches, as well as with the theses derived from structuralism and long-term analyses, was able to develop approaches that contributed to a new epistemology of diseases and medical practices ( Tarelow, 2018 , p.157).

In this way, from this perspective of social history, researchers focused on investigating and reflecting on individuals (including those who were institutionalized), their unique characteristics, their relationships with others, with time, and with their bodies (healthy, sick, or socially invisible), but also with collectivity and institutions, including those related to public health. The history of “great men of medicine” helped forge a discourse that legitimized actions adopted at the time when these people lived and worked professionally. But when the narrative focuses on “great characters,” fundamental aspects of its historicity and complexity are lost (Hochman, Armus, 2004), and other individuals, especially the marginalized, are made invisible. This is not a question of delegitimizing or diminishing the importance of these professionals in consolidating the field of public health in Brazil, but rather of observing them from another perspective that is more inclusive and therefore richer and more capable of instigating new reflections on this field of knowledge. It is therefore up to historians to identify new historical agents, along with noises or dissonant voices within this memorialist and historical narrative: diverse, plural discourses full of meanings to be perceived and integrated into the struggles for memory and history, including (what is now) collective health.

Final considerations

The reflections proposed in this article are not intended to be definitive, nor do they define the subject and the sources analyzed here. It is a historiographical exercise under construction, which is mainly intended to expand discussions on the history of health and disease in Brazil. With regard to analysis of these sources, it is an initial study that seeks to engage in dialog with other research, broadening knowledge on this topic and on the field of public health, collective health, and social history. In addition to building new historiographical paths, the main aim is to increase the visibility of studies on patients with Hansen’s disease, an illness that causes such profound damage to the skin and lives of the people affected by it, and which still seems to be invisible to the country.

ACKNOWLEDGMENT

This research, conducted between 2013 and 2017, was carried out with support and encouragement from the São Paulo Research Foundation (FAPESP), process number 2013/16.028–1).

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NOTES

• 1
  Such as Law 9.010 of March 29, 1995, which determined that the terminology adopted for leprosy and “derived terms” such as leper, leprous, leper colony, etc. was to be replaced by Hansen’s disease and its derivatives (hansenology instead of leprology, dermatology hospital instead of leprosy hospital, etc.). Even so, the Brazilian federal government only definitively adopted the term “Hansen’s disease” after this law was passed. In this article, both leprosy and Hansen’s disease will be used depending on the context in order to avoid anachronisms.
• 2
  For this and other texts in Portuguese, a free translation has been provided.
• 3
  An article entitled “Modernidade e trabalho no filme de divulgação asilo-colônia Aimorés – 1944” (Modernity and work in the 1944 Aimorés leper colony publicity film) ( Porto, 2014 ) analyzed aspects of discourse present in educational films produced to publicize activities to combat leprosy, as in the case of the Aimorés leper colony located in Bauru, São Paulo. Other details of these visual records were presented; the variations in supports and language reveal not only the importance given to these activities, but also how the State was represented in public opinion at that time.
• 4
  Along these lines, Ivan Ducatti (2007) analyzes the ideological uses of science and medicine to legitimize the social exclusion of people with leprosy which was caused by compulsory quarantining, even though treatment was available at that time.
• 5
  The pilot phase of the CNCL was first implemented in Rio de Janeiro in 1954 through an agreement signed between the Rio de Janeiro State Secretary of Health and Assistance and the National Leprosy Service in 1954. From this a working plan was established to identify sanitary and prophylactic needs in the regions served in what was then the capital of the country. See Maciel (2007) .
• 6
  Specifically with regard to federal government administrations, logos and slogans on the posters made it possible to establish dates; for example, “ Governo do Brasil – tudo pelo social ” was used during the presidential term of José Sarney (1985-1990), “ Governo Federal – trabalhando em todo o Brasil ” during the two terms of Fernando Henrique Cardoso (1995-2003), and “ Brasil: um país de todos – Governo Federal ” during the first two terms of Luís Inácio Lula da Silva (2003-2011).
• 7
  The World Health Organization (WHO) defined, in a resolution from the 44th Global Assembly, that fewer than one case per 10,000 inhabitants is required to consider Hansen’s disease eliminated in a country. Of the 219,000 new cases recorded worldwide in 2012, Brazil accounted for 16%, behind only India (58%), according to WHO data.
• 8
  Officially, compulsory quarantine was abolished in 1962 by Decree 968/1962, but according to interviews with former patients, this practice extended unofficially into the mid-1980s. See Porto (2018) .
• 9
  A total of five posters were produced specifically for this campaign, featuring along with this lady a boy, a young man, a young lady, and a girl. With this configuration, we note the idea that leprosy can affect any individual, regardless of age, race, or gender.

Translated by Tracy Miyake.

Publication Dates

• Publication in this collection
  27 Nov 2023
• Date of issue
  2023

History

• Received
  06 May 2022
• Accepted
  20 Sept 2022