UNIVERSIDAD MILITAR N.G. - No discriminación y no estigmatización VIH. 2012

Julio-Diciembre 2012 HIV/AIDS and the principle of non-discrimination and non-stigmatization 118

HIV/ SIDA Y LOS PRINCIPIOS

DE NON-DISCRIMINACIÓN Y

NON-ESTIGMATIZACIÓN

Volnei Garrafa Alcinda Maria Machado Godoi HIV/AIDS E OS PRINCÍPIOS Sheila Pereira Soares DA NÃO-DISCRIMINAÇÃO E NÃO-ESTIGMATIZAÇÃO Fecha de recepción: octubre 2 de 2012 Fecha de evaluación: noviembre 1 de 2012 Fecha de aceptación: noviembre 10 de 2012 Bioethicist; Coordinator of the UNESCO Chair and the Postgraduate Bioethics Program (Master’s and Doctoral) of the University of Brasilia, Brazil; Member of UNESCO’s International Bioethics Committee (IBC) and of the Board of Directors of the International Association of Education in Ethics (IAEE). Physician; Student of the Postgraduate Bioethics Program (Doctoral degree) of the University of Brasília, Brazil. Nurse; Student of the Postgraduate Bioethics Program (Master degree) of the University of Brasília, Brazil. rev.latinoam.bioet. / ISSN 1657-4702 / Volumen 12 / Número 2 / Edición 23 / Páginas 118-123 / 2012 HIV/AIDS AND THE PRINCIPLE OF NON-DISCRIMINATION AND NON-STIGMATIZATION / Volnei Garrafa, Alcinda Machado & Sheila Pereira RESUMEN The text examines the article 11 of the Universal Declaration on Bioethics and Human Rights of UNESCO that deals with the principle of non-discrimination and non-stigmatization. Both concepts are related to the theme of human dignity, while discrimination is an inherent part of stigma: stigma does not exist if there is no discrimination. In this context,

this paper aims to study the relationship between stigma, discrimination and HIV / AIDS. The study argues that to loosen the bonds that hold the subjects that are attached to them is necessary questioning the broader for119 ces - social, cultural, political and economic - that structure stigma, stigmatization and discrimination as social processes directly linked to production and reproduction of structural inequalities. Palabras Clave Bioethics; Human rights; Human dignity; Non-discrimination; Non-stigmatization. SUMMARY El texto analiza el artículo 11 de la Declaración Universal sobre Bioética y Derechos Humanos de la Unesco que trata del principio de la no-discriminación y la no-estigmatización. Ambos conceptos están relacionados con el tema de la dignidad humana, al mismo tiempo en que la discriminación es parte inherente del estigma; no existe estigma si no hay discriminación. En este contexto, el trabajo pretende estudiar la relación entre estigma, discriminación y el HIV/Sida. El estudio defiende que para soltar las amarras que prenden los sujetos que están presos a ellas es necesario cuestionar las propias fuerzas más amplias – sociales, culturales, políticas y económicas – que estructuran el estigma, la estigmatización y la discriminación como procesos sociales directamente ligados a la producción y la reproducción de las desigualdades estructurales. Keywords Bioética; Derechos humanos; Dignidad humana; Nodiscriminación; No-estigmatización. RESUMO O texto analisa o artigo 11 da Declaração Universal sobre Bioética e Direitos Humanos da UNESCO que trata do princípio da não-discriminação e não-estigmatização. Ambos os conceitos estão relacionados com o tema da dignidade humana, ao mesmo tempo que a discriminação é parte inerente do estigma: não existe estigma se não houver discriminação. Neste

contexto, o trabalho objetiva estudar a relação entre estigma, discriminação e o HIV/Aids. O estudo defende que para soltar as amarras que prendem os sujeitos que estão presos a elas é necessário questionar as próprias forças mais amplas - sociais, culturais, políticas e econômicas - que estruturam o estigma, a estigmatização e a discriminação como processos sociais diretamente ligados à produção e reprodução de desigualdades estruturais. Palavras-Chave Bioética; Direitos humanos; Dignidade humana; Não-discriminação; Não-estigmatização. rev.latinoam.bioet. / ISSN 1657-4702 / Volumen 12 / Número 2 / Edición 23 / Páginas 118-123 / 2012 Julio-Diciembre 2012 INTRODUCTION Gofman was one of the pioneering researchers dealing with stigmatization and produced one of the key studThe complementary nature and interdependence of ies on this topic: “Stigma: notes on the management of the principles of the Universal Declaration on Bioethics spoiled identity” (2). In his view, the Greeks were the and Human Rights, which form an interlinked set, is very first to use the term stigma to name the marks produced clear in relation to article 11 (No individual or group should by cuts or burns on the bodies of individuals to whom a be discriminated against or stigmatized for any reason; negative moral status was attributed, in relation to the such actions constitute violations of human dignity, human status shared by the majority of other people. The stigma rights and fundamental freedoms) (1). This enunciates that would have the aim of visibly marking out and identifypractices of discrimination against and stigmatization of ining the bodies of these individuals, who were then to be

dividuals or groups constitute violations of article 3, which avoided. Along this line of ideas, a stigma is a profoundly deals with “human dignity, human rights and fundamental depreciative characteristic or attribute that causes the infreedoms”, which should be respected in their entirety. dividual not to be seen as an ordinary complete person, There is no way that stigmatization can be delinked thereby provoking an effect of discredit on the individual from human dignity. The latter only exists when the forcarrying the stigma and “reducing him to a spoiled and mer is denied; one absolutely excludes the other. Stigdiminished person” (2 - p. 12). matization in itself violates human dignity; it only occurs This is therefore an attribute formed by difference or or becomes established as dignity is taken away from deviation, thus leading to deterioration of identity. Acthe other person, i.e. when the other person is dimincording to Goffman, stigmatization changes the human ished with regard what makes him a human being, and nature of the person with the stigma, such that he is when he is made inferior and considered inferior to the not seen as completely human in the eyes of the othrest of the people. Furthermore, the consequence of ers. Based on this, a variety of forms of discrimination stigmatization is discrimination. are practiced, through which and often without much Stigmatization is the process of producing and reprothought, the individual’s chances of life are diminished ducing asymmetrical power relationships, when negative (2 – p 15). The stigma makes the individual inferior, attitudes based on particular attributes (such as certain thereby lessening him in relation to others, assaulting conditions of health, gender, race, sexual behavior, etc) his own human dignity and having a negative impact on are directed towards individuals or social groups and crehis personal and social life. ate and sustain the legitimacy of dominant groups within Among the possible negative consequences pointsociety. Discrimination is the manifestation of stigmaed out by researchers on stigma are the following: tization, and consists of all forms of exclusion or retense and uncomfortable social interactions, limited so12O striction, whether through action or through omiscial networks, impaired quality of life, low self-esteem, sion, based on a stigmatizing attribute. depressive symptoms, unemployment and loss of income, among others. Within the field of health, the chances of treatment THE RELATION BETWEEN STIGMA AND DISCRIMINATION for individuals with certain stigmatizing diseases are lower, precisely because of the stigma that accompanies Stigmatization leads to loss of status and to discriminathese diseases. For example, many patients with certion. Discrimination is an inherent part of stigmatization; tain types of mental diseases, who would benefit from there is no stigmatization if there is no discrimination. treatment, give up seeking healthcare services for fear When a person is labeled and this label is associated with of being identified as having these diseases and coming negative characteristics, there is a rational construction to suffer the consequences of being thus labeled (3). Rethat leads to disqualification, rejection and exclusion. Stigfusal to seek healthcare and low adherence to treatment matization means that the stigmatized individual experiare phenomena that are associated with stigmatization, ences situations of great social disadvantage, through creamong other factors. This is observed in relation to sevating structural discrimination that negatively affects the eral diseases, including some with very strong and speenvironment surrounding the stigmatized individual. cific characteristics, like AIDS (4). rev.latinoam.bioet. / ISSN 1657-4702 / Volumen 12 / Número 2 / Edición 23 / Páginas 118-123 / 2012 HIV/AIDS AND THE PRINCIPLE OF NON-DISCRIMINATION AND NON-STIGMATIZATION / Volnei Garrafa, Alcinda Machado & Sheila Pereira

STIGMA, DISCRIMINATION AND HIV/AIDS

In the short space available for this presentation, it is impossible to present all the (bio)ethical interconnections involved in issues relating to discrimination, stigmatization and their relationship with HIV/AIDS, but we intend to at least introduce some topics from a Brazilian viewpoint about the subject. The role of stigmatization in producing and reproducing power and control relationships was described by Parker and Aggleton (5), who developed a conceptual There is no way that stigframework for thinking about this problem and its cormatization can be delinked relation with HIV and AIDS and its repercussions. These authors’ work has been central to the development of from human dignity. The public actions for controlling HIV/AIDS in Brazil and is relatter only exists when the produced here. In their view, in addition to the individual dimension, it has to be taken into consideration that a former is denied; one abstigma is a social product that reproduces inequalities. solutely excludes the othStigmatization replicates systems of hierarchy and domination relating to social class, gender, race, ethnicity and er. Stigmatization in itself so on, thereby serving to create, maintain or reinforce soviolates human dignity; it cial inequalities. According to these authors, stigma and stigmatization are constructed at the intersection point only occurs or becomes between culture, power and difference, and established as dignity is ... it is only by exploring the relationships between these different categories that it becomes taken away from the other possible to understand stigma and stigmatizaperson, i.e. when the other tion, not simply as isolated phenomena or as expressions of individual attitudes or cultural valperson is diminished with ues, but rather, as central elements for constitutregard what makes him a ing social order (5 - p. 14). human being, and when This is a fundamental perspective for understanding he is made inferior and

stigmatization. It is not just dependent on power relationships, but is in fact at the service of power. Moreover, considered inferior to 121 speaking of power is to speak of social inequalities. the rest of the people. In the specific case of AIDS, superposition of stigma can be seen (6). The strong connections that exist between seropositivity for the virus and poverty, substance abuse and sexual behavior that is deviant or outside of the socially accepted patterns have produced one of the strongest stigmas of contemporary society among HIV-positive individuals. The stigma that accompanies AIDS has multiple facets that cross and interact, with mutual reinforcement. The synergy among these multiple sources of stigma is a phenomenon that is also observed in relation to other situations. For example, rev.latinoam.bioet. / ISSN 1657-4702 / Volumen 12 / Número 2 / Edición 23 / Páginas 118-123 / 2012 Julio-Diciembre 2012 poverty increases the potential of a variety of stigmatization factors (gender, race, ethnicity, sexual orientation, generation, etc), thus constituting an additional factor for individual and collective vulnerability. Observing the HIV/AIDS phenomenon from a socioanthropological viewpoint is useful in that it enables broader reflection on the phenomenon and its repercussions, towards comprehending its relationship with power and domination, given that stigma plays a central role in producing and reproducing power and control relationships in all social systems. In this regard, “stigma causes some groups to be devalued and others to feel superior in some manner” (5 – p. 11). Symbolic violence describes the process through which symbolic systems (words, images and practices) Symbolic violence describes promote the interests of the dominant groups, along the process through which with distinctions and hierarchies within them, while at

the same time legitimating such rankings by convincing symbolic systems (words, the dominated individuals to accept the existing hierarimages and practices) prochies. The concept of symbolic violence therefore has much in common with the notion of hegemony that was mote the interests of the elaborated by Gramsci (7) and rethought through culdominant groups, along with tural theories, for example by Raymond Williams (8,9). While the ‘rule’ is based on direct coercion, ‘hegemony’ distinctions and hierarchies is achieved through complex interactions between politiwithin them, while at the cal, social and cultural forces that organize meanings and dominant values within the social field, so as to legitisame time legitimating such mate the structures of social inequality, even for those rankings by convincing the who are the objects of domination. With regard to stigmatization and discrimination, dominated individuals to acthese views are important for a variety of reasons. Firstly, cept the existing hierarchies. if all cultural meanings and practices encompass interests and signal social distinctions between individuals, groups and institutions, then few meanings and practices do this as clearly as stigma, stigmatization and discrimination. Stigmatization and discrimination therefore operate not 122 only in relation to differences but also, even more clearly, in relation to social and structural inequalities. In fact, it can be seen that stigmatization plays a key role in transforming differences into inequality, and it can in principle function in relation to any of the main axes of structural inequality that are present between cultures: class, gender, age, race or ethnicity, sexuality or sexual orientation, and so on. Secondly, and even more importantly, stigmatization simply does not occur in an abstract manner. On the contrary, it is part of the complex struggles for power that are at the heart of

rev.latinoam.bioet. / ISSN 1657-4702 / Volumen 12 / Número 2 / Edición 23 / Páginas 118-123 / 2012 HIV/AIDS AND THE PRINCIPLE OF NON-DISCRIMINATION AND NON-STIGMATIZATION / Volnei Garrafa, Alcinda Machado & Sheila Pereira This new emphasis on stigmatization as a process linked to competition for power and legitimatization of hiIt can be seen that stigerarchies and social inequality is especially important for coping with stigmatization and discrimination relating to matization plays a key role HIV and AIDS. It stimulates a movement going beyond the in transforming differenctypes of psychological models and approaches that have so far dominated a large proportion of the studies carried out es into inequality, and it in this field, such as by Crawford (10), Herek (11), Herek and can in principle function in Capitanio (12) and Kelly et al (13). These models very often relation to any of the main view stigma as a thing that individuals impose on others. The new emphasis is on wider forces (social, cultural, politiaxes of structural inequalcal and economic) that structure stigma, stigmatization and ity that are present bediscrimination as social processes that are inherently linked to production and reproduction of structural inequalities. tween cultures. REFERENCES • UNESCO. Declaração Universal sobre Bioética e Direitos Humanos. Paris. Tradução para ao português da Cátedra UNESCO social life. Expressed more concretely, stigma is used de Bioética da Universidade de Brasília. 2005. by real and identifiable social players who seek to le- • GOFFMAN, E. Estigma: notas sobre a manipulação da identidagitimate their own dominant status within the existing de deteriorada. Rio de Janeiro: Editora Guanabara. 1988

• WATSON, A.C. & CORRIGAN, P.W. The Impact of Stigma on structures of social inequality.

Service Access and participation: a guideline developed for the As well as helping us to understand that stigmatiBehavioral Health Recovery Management project. University of zation is part of a complex social effort relating to the Chicago Center for Psychiatric Rehabilitation. In: http://www. bhrm.org/guidelines/stigma.pdf Acesso em 20/10/2010. structures of inequality, the notions of symbolic vio- • UNAIDS - Joint United Nations Programme on HIV/AIDS. HIVlence and hegemony also help us to understand how it related stigma, discrimination and human rights violations: is that people who are frequently stigmatized and discase studies of successful programmes. UNAIDS best praccriminated against by society accept and even internaltice collection, 2005. • PARKER, R. & AGGLEETON, P. Estigma, Discriminação e Aids. ize the stigma to which they are subjected. Precisely Rio de Janeiro: Associação Brasileira Interdisciplinar de AIDS – because they are subjected to an oppressive symbolic ABIA, 2001. system that has the function of legitimating inequalities • PARKER, R. O estigma como barreira à prevenção do HIV. Anais do Seminário Prevenção das DSTs/AIDS: novos desaof power based on different understandings of value fios. Rio de Janeiro: ABIA, 2010. and worth, the capacity of the oppressed, marginalized • GRAMSCI, A. Prison notebooks. London: Lawrence 123 and stigmatized individuals or groups to resist the forcand Wishart. 1970. • WILLIAMS, R. Marxism and literature. Oxford: Oxes that discriminate against them is limited. ford University Press. 1977. • WILLIAMS, R. The sociology of culture. New York:

FINAL CONSIDERATIONS Schoken Books. 1982. • CRAWFORD, A.M. Stigma associeted with AIDS: a meta-analysis. Journal of Apllied Social Psychology, 1996; 26(5):398-416. To loosen the leash of stigmatization and discrimi- • HEREK, G.M. Illness, stigma and AIDS. In Psychological asnation that holds down these individuals, it is therefore pects of serious illness: chronic conditions, fatal diseases and necessary to question the very structures of equality and clinical care. Hyattsville, MD: American Psychological Association. 1990, pp. 107-150. inequality that exist within any social scenario. Insofar as • HEREK, G.M, CAPITANIO JP. Public reactions to AIDS in the all known societies are structured on multiple bases of hiUnited States, a second decade of stigma, American Journal of erarchy and inequality (even if these bases are not necesPublic Health. 1993; 83(4):574-577. • KELLY, J.A.; SAINT-LAWRENCE, J.S.; SMITH, S.; HOOD, H.V. sarily the same), the act of placing this structure in ques- & COOK, D.J. Stigmatization of AIDS patients by physicians. tion is to question the most basic principles of social life. American Jounal of Public Health, 1987; 77(7):789-791. rev.latinoam.bioet. / ISSN 1657-4702 / Volumen 12 / Número 2 / Edición 23 / Páginas 118-123 / 2012