PRESENTATION
It is now more than two decades since the Aids epidemic started. What seemed to be, in the early years, an emergency bordering on catastrophe, during the course of the second decade increasingly revealed itself as a serious disease, but a manageable one within the possibilities offered by technology (specifically, the development of new drugs) and by society (the creation of new forms of social organization and solidarity of several kinds, in response to the epidemic).
If the social response vis à vis the epidemic progressed over the course of these years, the investigation of the social dimensions of the Aids epidemic also evolved, as did the investigation of its consequences for people's lives. The texts included in this special Interface magazine dossier about Aids are the result of this evolution. They can also be regarded as the result of a growth and maturation process in the field of collective healthcare and in the social sciences, in an effort to find answers for the Aids epidemic. This dossier is proof that we have progressed far beyond where we were some fifteen years ago. Contrary to epidemiology and medical sciences which were, for several reasons, speedier in responding to the epidemic, the social and human sciences, both in Brazil and in other parts of the world, took a long time to face the new threat, surrounded on all sides by the heavy burden of sexuality and death, the ghost of stigma and the deep reality of fear. Whereas the response of the medical field was in a way a solidary one in the face of the suffering brought about by the epidemic, the human sciences seemed at first to shy away from it, uncertain about the type of contribution they could bring to facing the new challenge posed by Aids.
As time went by, many things changed. Over the course of the years, the social movement that little by little formed around Aids called attention to the huge social and cultural dimensions of the epidemic. Moreover, it increasingly obliged the social and human sciences to face their obligations in the collective response that Aids demanded. Starting from the beginning, when the investigation of the behavioral dimensions of the epidemic, carried out largely from the epidemiological point of view, dominated the field, the view of human sciences broadened increasingly in order to take into account the social, cultural and political aspects of Aids. Communication issues arose as a core focus and a new vision of the role of education in healthcare started to be constructed based on the preventive work carried out in the face of the epidemic.
The texts brought together in Interface's "Aids Dossier" are the fruit of the intense development of this field of research in the last few years. They are articles that offer a broad overview of the theoretical concerns and empirical data produced in this field. They are examples of a new point of view that, increasingly, results in relevant insights, coming not only from the investigation into Aids, stricto sensu, but also from the field of collective healthcare more broadly. In other words, these texts are examples of how research on Aids fuels the field of collective healthcare as a whole, unveiling new paths and offering relevant learnings for a renovation of this field in the present.
José Ricardo Ayres' text offers a clear example of this movement between Aids and collective healthcare in a broader fashion. Revisiting the experience of Aids education and prevention over the years, he draws four key lessons from Aids: (1) that terrorism does not work; (2) that risk is a useful but limited concept; (3) that prevention cannot be taught; and (4) that we can only constitute our identities based on Others. Carrying out a deeper analysis of each one of these lessons, José Ricardo conducts the reader along a sometimes difficult path, which has led the field of prevention to rethink and abandon the terrorist approach of the early campaigns fighting the epidemic, and to reconstruct itself differently over the course of the years, developing the notion of social vulnerability vis à vis HIV infection, in addition to the epidemiological category of behavioral risk. Taking the implications of this understanding seriously, the text takes the first steps toward the construction of a hermeneutics of collective healthcare, in which the dialogical construction of the subjectivities substitutes the vertical education that historically dominated the field of healthcare education. Intersubjectivity, understood as a dialogical process, opens new possibilities for a truly emancipative prevention policy, in which the false promises of more technical approaches (with their "target audiences" and "behavior change theories") are unmasked.
Vera Paiva embraces a similar path in her text on psychosocial emancipation in HIV/ Aids prevention and care. Using the need to politicize the work and discourse on prevention and education as a starting point, Vera's text tries to render operational the concept of vulnerability through what she calls "psychosocial emancipation". Rejecting the private market of individual healthcare, in which people become mere consumers of prevention and assistance services, she proposes the construction of the notion of a "subject-citizen" as the key element for collective healthcare. The starting point of this proposal is the understanding of the continuum between prevention and assistance, to the extent that Aids prevention also depends on the treatment and care of those who live with the disease. With this analytical movement, the text resumes discussion of the ethics of solidarity as a cornerstone for any collective healthcare action and indicates possible paths for a truly solidary investigation in the future.
These same concerns are reflected in Angélica Fonseca's essay on the prevention of STD/Aids in the school environment. Examining the way how the requirements imposed by Aids obliged the school system to reconsider the importance of sexual education, Angélica's text leads us to a reflection on the tension that exists between an approach whose objective is to "correct" the deviations of human behavior and a point of view that sees in liberating educational practices the sole way that can actually lead to effective, true prevention of Aids and other sexually transmissible diseases. However, the construction of freedom, according to Angélica's essay, forcibly passes through the deconstruction of the impervious categories that organize sexuality in the quotidian of social life. To this end, the author stresses sexuality as a social construction, the fruit of human interaction, as opposed to the essentialist or naturalistic approaches to sexuality, which reify it as a product of human nature.
The echoes of these three more theoretical texts resonate in the two more empirical texts of this dossier: Daniela Knauth, Regina Maria Barbosa, Kristine Hopkins, Marion Pegorario and Regina Fachinni's text on medical culture and reproductive decisions among women carrying the HIV virus in São Paulo and Porto Alegre, and César Ernesto Abadia-Barrero's text on the culture of support homes for children with Aids in the State of São Paulo. Precisely because of their themes (women with HIV struggling with the difficult decision of whether and when to have children, and children with HIV becoming adults, possibilities until recently discarded from the reality of a disease considered to be inevitably fatal, both socially and biologically), these two essays draw our attention to the way in which we build our premises (or presuppositions) about an epidemic that currently seems to evolve faster than our capacity to accompany it. In the text on reproductive decisions, the authors clearly demonstrate the difficulty that medicine and physicians undergo to set aside their control of the truth in order to dialogue truly with the patient and the damage that this inability to dialogue can cause to people's lives. Furthermore, in the text on support homes for children carrying HIV, the author shows how the expanding period of survival and, therefore, the transformation of children into adolescents, raises, in the several contexts in which care is provided, the heavy burden of ideas and stereotypes that we still carry in our encounter with the complexity and contradictions raised by the epidemic.
In bringing together these texts, the dossier offers a fine view of the type of issue the epidemic of Aids currently poses for discussion by the social and human sciences. The articles outline an epistemology of solidarity and a policy of construction of knowledge that constitute a fundamental contribution, not only for our understanding and comprehension of Aids, but for the field of collective healthcare as a whole. They remind us that although major progress has taken place in our confrontation with the epidemic, there is still a great deal to be done. This dossier summons all of us to a dialogue capable of constructing truly democratic public health practices.
Richard Parker
Senior Professor and Head of the Department of Sociomedical Sciences
School of Public Health, Columbia University
Publication Dates
-
Publication in this collection
09 Mar 2009 -
Date of issue
Aug 2002
