Translation: Cecilia Quiroga
The Chagas disease is frequently referred to as the effects that the parasite Trypanosoma cruzi (T. cruzi) has on people’s health. However, from our perspective, Chagas is much more than that: it is a complex socioenvironmental health problem in which elements of different nature converge and interact. The biomedical and epidemiological aspects, which are most frequently addressed, are only a piece of the puzzle that needs to be complete in order to understand Chagas in all its complexity. Social, environmental, economic, political, cultural, and educational elements turn out to be essential in comprehending the magnitude of the problem without prejudice or stigmatizations.
Therefore, we believe that any attempt at addressing this issue requires different perspectives that consider it from its diverse angles. This is why more than seven years ago we created a multidisciplinary group – comprised of people from different areas and various careers -- to promote an integrated and innovative approach of Chagas in different contexts (schools, museums, fairs, plazas, universities, social organizations, etc.). In this way, with collaborative work and in articulation with different social actors, our objective is to create and encourage various ways of looking and understanding Chagas from multiple disciplines, scenarios, and languages. In our work, art, science, and other “subuniverses” come into play and are integrated into trying to address Chagas beyond traditional approaches.
We are members of the group ¿De qué hablamos cuando hablamos de Chagas? (“What do we talk about when talking about Chagas?”), which is formed by people from different areas with various careers (researchers, grant holders, students, communicators, and teachers) that belong to many institutions -- like the National Scientific and Technical Research Council (CONICET), the National University of La Plata (UNLP), the University of Buenos Aires (UBA), the National University Arturo Jauretche (UNAJ), the Centre for Educational Research and Innovation (CIIE) from Region 1, Province of Buenos Aires -- as well as independent workers. Since the beginning of 2011, we have been constantly working and trying to develop an approach that shows the complexity of Chagas and its impact on the community. Given the fact that we believe there isn’t only one possible language or only one group (or type) of people allowed to speak about Chagas, we aim at creating and promoting integrated and innovative approaches with a social impact from multiple disciplines, languages, and scenarios. The reflection and experiences conveyed here come from more than seven years of shared work, which have kept us constantly researching, led us to enriching dialogues, and allowed us to incorporate new voices and looks into the complex problem of Chagas.
¿De qué hablamos cuando hablamos de Chagas? -- Art and Chagas day in Primary School No. 20 in Poblet (Buenos Aires Province, Argentina) with the participation of the plastic artist Néstor Favre-Mossier. August 2015.
Introduction: Why Do We Talk About and Work on Chagas?
Before starting, let’s think of a kaleidoscope. A special kaleidoscope: formed by one, two, or three beads of the same color and similar size that don’t move. Is that a kaleidoscope?
In a kaleidoscope every little bead with its own shape, color, and size is essential to forming a diverse and enriching image: a dynamic image that results from a unique conjunction of all the parts.
We talk about and work on Chagas because Chagas is much more than a disease: it represents a complex socioenvironmental health problem in which elements of different nature converge and interact (Sanmartino, 2015) and whose approach is generally limited and usually focused on some specific aspects. As a consequence of this partial and hardly dynamic approach, as if it was a monochromatic kaleidoscope with few static pieces, the great progress in certain knowledge areas hasn’t had a proportional effect on the health and welfare of the directly and indirectly affected people. For this reason, with our group, we talk about and work on Chagas from a very unusual perspective.
But let’s go one step at a time, adding each piece of this kaleidoscope, with its special shape and peculiar color:
From the biological point of view -- the most common when addressing the topic-- the Chagas disease is a parasitosis caused by the unicellular parasite Trypanosoma cruzi (T. cruzi). This parasite is transmitted by the stools of a blood-sucking insect, which in Argentina and other countries from the Southern Cone is known by the Quechuan name of “vinchuca.”
From the medical point of view, the Chagas disease has an acute stage, when the parasite enters the organism, which can be characterized by symptoms like malaise, prolonged fever, and vomiting, or can be asymptomatic. After approximately one month approximately, the chronic stage starts. While 70 percent of people with a chronic Chagas infection may not present any symptoms throughout their lives, 30 percent of them may develop heart, digestive, and in very unusual cases, neurological problems 20 or 30 years after getting the parasite. The available treatments are partially effective and the sooner the diagnosis, the more effective the treatment. However, it is estimated that only one out of 10 people has been diagnosed…which effects the aspects of both medical and public health. This is also proof of how difficult it is to address one piece of the kaleidoscope without directly relating it to other pieces.
From the epidemiological point of view, the Chagas disease is an American endemic disease, originally spread out in rural areas from the south of the United States to Patagonia, Argentina. It is estimated that there are currently at least two million people infected with T. cruzi in Argentina and at least eight million people infected in the world, mainly in Latin America. Nevertheless, the epidemiological scenario has become more complex due to the migratory movements of the last decades, the consequent urbanization and globalization phenomena, and the climate change. Because of this, it has been a while since Chagas stopped being an exclusively rural problem and exclusively a Latin American reality (Briceño-León and Galván, 2007). At this point, separating the epidemiological elements from the environmental, demographic, and social ones turns to be almost impossible.
The biological, medical, and epidemiological elements are undoubtedly important; however, they are only a small piece of all the complexity involved in the “kaleidoscopic” problem of Chagas.
What Do We Talk About When Talking About Chagas?
Based on our initial reflections, it is needless to say that when we talk about Chagas, we talk about “something” that is much broader and complex than the disease that the parasite T. cruzi can cause on people’s health. Apart from the above mentioned elements (biological, medical, and epidemiological), there are other elements, which are usually omitted or underestimated, that are essential when approaching Chagas so as to respond to the needs of the affected people and have a real social impact. These are social, environmental, economic, political, cultural, and educational elements. All of thess are indispensable to knowing and acknowledging the depth of the problem with all of its complexities and no prejudice or stigmatizations.
Reasons for and Learning Gained from a Collective Interweaving
We are convinced of the necessity of going beyond “preventing and curing the disease” to focus on the promotion of health that improves people’s quality of life. With this purpose in mind, throughout more than seven years of work, we have been constituting a multidisciplinary group -- formed by people from different areas and various careers -- and trying to approach the problem of Chagas from an integrated, innovative, and “kaleidoscopic” perspective in different educational contexts: schools, museums, fairs, plazas, universities, social organizations, etc. With our proposals we aim at integrating multiple aspects from at least four dimensions that dynamically intertwine: biomedical, epidemiological, sociocultural, and political (Sanmartino, 2015). In this way, with collaborative work and in articulation with different social actors our objective is to create and encourage various ways of looking at, understanding, and approaching the problem of Chagas.
Both art and education, in a broad and inclusive sense, are key elements to shortening the distance between formal and informal knowledge, and building alternatives that impact and transform reality. For this reason, we promote joint work among researchers, teachers, students, and the community in general at all educational levels (school level as well as technical and professional training levels) and in all possible contexts (rural/urban, formal/informal, where there are vector insects/where there aren’t any, etc.) with the strong purpose of getting a greater number and diversity of voices talking about Chagas.
From this perspective, the group ¿De qué hablamos cuando hablamos de Chagas? brings forward a kaleidoscopic educational proposal (Sanmartino et al., 2012) by incorporating a wide range of resources in different scenarios and with diverse social actors. Throughout our career, different arts, sciences, and popular knowledge have been combined to create a “multiple shape and color kaleidoscope” whose objective is to overcome the dichotomies “sick/healthy,” “rich/poor,” “rural/urban”, etc.
Where Do We Come From? Where Are We Headed?
At the beginning of 2011, we took our first steps of what later became the group ¿De qué hablamos cuando hablamos de Chagas?. Back then, members of the Group of the Didactics of Science (IFLYSIB, CONICET-UNLP) together with the Educational and Scientific Dissemination Area from the Museum of La Plata (FCNyM, UNLP), teachers and researchers from the Centre for Educational Research and Innovation (CIIE Region I – General Directorate for Culture and Education of the Province of Buenos Aires), and researchers and grant holders from CONICET (Triatomines Laboratory CEPAVE-UNLP and ICT Milstein-CABA) gathered to organize La Semana del Chagas en el Museo (“the Chagas Week at the Museum”) in La Plata. Since then, we have strengthened relationships to create a work group that aims at developing and promoting an integrated and critical approach to the problem of Chagas without prejudice or stigmatizations.
Our work has the institutional guarantee of the Faculty of Natural Science and the Museum of the National University of La Plata, and of the Fund for Scientific and Technological Research from the National Agency for Scientific and Technological Promotion of the Ministry of Science and Technology.
Since then, we have organized and developed a great number of educational, communicative, and artistic activities. For example, one of our annual proposals is Mes del Chagas (“The Chagas Month”) in the Museum of La Plata, which has already taken place six times since 2012.
In general terms, Mes del Chagas consists of:
i. A series of weekly talks by specialists that address the multiple dimensions of the problem of Chagas and promote an open and enriching dialogue with the participants. The talks are aimed at a general audience and, at the same time, are part of Courses of Teaching Training Programmes (Kindergarten, Primary School, and Secondary School, the three levels of the Argentinian educational system) and Complementary University Courses.
ii. Educational-recreational activities during the weekend for the general public visiting the museum. The activities include observing vinchucas (vector insects) with stereoscopic magnifying glasses, distributing materials to raise awareness, and projecting audiovisual material, all of which provide opportunities to have dialogues about Chagas.
iii. A closing thematic concert in which artists, who respond to a call that we open every year, interpret original songs or covers of pre-existing songs about the problem of Chagas. Apart from local artists, musicians from Barcelona, Brazil, and Colombia have also participated. And besides, puppet shows, story narrations and other art expressions have also taken place.
Apart from “Mes del Chagas,” we annually participate in a variety of massive events (the Night at the Museums, the International Book Fair of Buenos Aires, Tecnópolis, etc.), do educational activities in schools and public spaces, hold art exhibitions and workshops, and project audiovisual materials. Moreover, we present the results of our proposals and the reflections stemming from our work in various publications and in extension, educational sciences, and related areas conferences in and outside of the country.
Furthermore, during the years we have collaboratively produced a wide range of materials, resources, and bibliography for free distribution that enrich the group activities (available at www.hablamosdechagas.com.ar).
Signs That Evidence the Impact of Some Steps Taken
It is hard to determine the number of people who have been reached, sensitized, or inspired somehow by our work. In any case, by systematizing and assessing the impact, we have obtained very positive quantitative and qualitative indicators of the variety and significance of the impact, even beyond our expectations, having earned great national and international recognition.
When assessing this impact, we distinguish direct participants of the activities from indirect and “domino-effect” ones, especially considering that a lot of our proposals are aimed at “multiplying agents” like teachers, artists, communicators, and university students that later carry out professional tasks related to diverse dimensions of Chagas. Moreover, there is the public that has access to our audiovisual materials, books, and other materials in paper, and the virtual public that surfs our website and Facebook account (with more than 3,000 followers) where all resources are available.
Regarding the amplifying effect, there are many examples of students and teachers who, inspired by our courses and workshops, have done activities related to Chagas in their classrooms or educational communities and registered them in graphic and audiovisual works, even years after participating in those courses.
In reference to the number of beneficiaries of our various activities, between 2011 and 2017, we can mention:
- Teachers taking courses and workshops held in the Museum of La Plata: 300
- Students of Complementary University Courses: 50
- Public participating in the Closing Concert of Mes del Chagas: 600
- General public in Tecnópolis: 500
- General public and teachers at the Book Fair: 500
- General public at the Night at the Museums -- at CONICET Central: 500
- Activities in schools: 15,000
- Activities in academic and university contexts: 2,000
- Activities in other public contexts like fairs, workshops, plazas, etc.: Hard to Determine
- The media (newspapers, radio, TV): participation in more than 30 news releases
- People that surf our website, Facebook account and send us emails: Countless
- Printed Chagas Manuals (CONICET): 600
- Printed books with narrations and illustrations: 2,000
- Printed postcards: 2,500
- Printed stickers: 10,000
- Printed leaflets: 5,000
As a Closure: Opening and Multiplying Possibilities
Along our years of work, we have put arts, sciences, and other knowledge into play. They have been dynamically integrated in work that has gained local, national, and international recognition and with which we explicitly aim at understanding and approaching the problem of Chagas in an innovative way to achieve a social impact.
We work on destigmatizing, bringing relevant and updated information of the current legislation closer for the community to know their rights, and exchange knowledge on the transmission and prevention of the disease, while at the same time we create networks and make public and free didactic resources available, all with a great artistic touch. We also aim at making our work a source of inspiration to approach other complex issues that affect different communities by encouraging critical and inclusive reflections of the diverse voices and looks.
In every step we take, we feel surprised, excited, and proud of observing how spaces that foster the integration of knowledge are created, how different actors that weren’t sensitive to Chagas because they found it “distant” or “foreign” now find their role and get involved, how directly-affected people can feel interested and have new resources to address the problem, and how we beat stigmas and prejudice, and add voices to talk about Chagas.
Illustration Credit: Carlos Julio Sánchez, from the book “Hablamos de Chagas: aportes para (re)pensar la problemática con una mirada integral” (2015), VocAR -- CONICET, Argentina. ISBN 978-950-692-119-4.
Briceño-León, Roberto & Jorge Méndez Galván. “The social determinants of Chagas disease and the transformation of Latin America”. Memorias Do Instituto Oswaldo Cruz, num. 102, supl. 1 (2007): pp. 109-112.
Sanmartino, Mariana. (Coordinación). Contenidos: Amieva, Carolina, Agustín Balsalobre, Carolina Carrillo, Gerardo Marti, Paula Medone, Cecilia Mordeglia, Vanina A. Reche, Mariana Sanmartino & M. Soledad Scazzola. Hablamos de Chagas. Aportes para (re)pensar la problemática con una mirada integral. Buenos Aires: CONICET, 2015.
Sanmartino, Mariana, Adriana Menegaz, Cecilia Mordeglia, Adriana Mengascini, Carolina Amieva, Soledad Ceccarelli & Guadalupe Bravo Almonacid. “La problemática del Chagas en 4d: Representaciones de docentes de nivel inicial y primario de La Plata” [en línea]. III Jornadas de Enseñanza e Investigación Educativa en el campo de las Ciencias Exactas y Naturales, September 26, 27 & 28, 2012, La Plata, Argentina. En Memoria Académica. Available in: http://www.memoria.fahce.unlp.edu.ar/trab_eventos/ev.3713/ev.3713.pdf