Ruben Ernesto Alfonso Rosas

Ernesto Rosas is transforming an inward-looking mutual aid society of HIV-positive Uruguayans into a dynamic advocacy, information and AIDS care center. In so doing, he aims to "return to society its responsibilities" by encouraging Uruguayans to view HIV-positive/AIDS as but one of many chronic illnesses that must be treated and understood.

Ernesto Rosas is "normalizing" HIV/AIDS and thus rooting out the social attitudes that stigmatize HIV/AIDS sufferers. Ernesto saw that the stigma of AIDS in Uruguayan society had been largely assimilated by HIV/AIDS sufferers themselves, who tended to be inward looking and isolated. His first effort, then, is to inject activism and mission into the country's organization of HIV-positive persons. Under his leadership, the organization has embarked on a revitalized program that has three elements: (1) advocacy for the rights of HIV/AIDS sufferers–for health care and for equal concern and respect from society generally; (2) education of the public about living with HIV and AIDS, as well as some prevention work; and (3) services for HIV/AIDS sufferers.

Uruguay, a country of three million people, registered its first case of AIDS in 1985. Ministry of Public Health statistics document the rapid spread of the disease: 1,322 known HIV carriers in 1993, 1,564 in 1994, 1,821 in 1995, and 2,130 in 1996. They are split evenly between homosexuals and heterosexuals, with heterosexual women being the fastest growing group. Sexual transmission causes 75 percent of the cases, with fifteen percent resulting from drug use. The death rate is about 51 percent.
In Uruguay, as in the rest of the world, the AIDS crisis has thrown a spotlight on the serious weaknesses and deficiencies of the health care system. Despite universal health coverage, Uruguay lacks adequate specialized services for AIDS patients. The capital of Montevideo has only nine hospital beds dedicated to AIDS sufferers. These are known as "hot beds" because patients are shuffled in and out so quickly. Outside Montevideo there are no specialized services. Nor do HIV/AIDS sufferers fare much better with their special nonmedical needs. Public and private agencies have dodged their responsibilities to provide services to meet the needs of HIV/AIDS sufferers.
In general, the HIV/AIDS sufferer bears a terrible social stigma that multiplies many times over the actual burdens and travails of the disease itself. Mainstream society from right to left has isolated the HIV carrier, unable to see past an "AIDS equals death" mind- set. Much of society still clings to the myth that there are only certain "at-risk groups" or that there is a clear profile of the HIV-positive person. Even today, many are rude to HIV-positive or AIDS sufferers, or are afraid of them. The result is that at the school, clinic or workplace, HIV/AIDS sufferers experience rejection and discrimination. Perhaps worst of all, in Uruguay many HIV/AIDS sufferers even seem to internalize the stigma, turning inward and not participating in the struggle to remind society that AIDS is about life, not death.

Ernesto's overall objective is to reframe the understanding of HIV/AIDS within Uruguayan society and beyond to the Southern Cone region such that the illness is understood as a problem for all society and not a stigmatized condition of deviants and libertines. His strategy to achieve this began in the transformation of Uruguay's organization of HIV-positive persons, the Association for Helping the HIV-Positive (ASEPO), from an inward looking mutual aid society into a dynamic advocate for the rights of HIV/AIDS sufferers and an effective public educator.
As Coordinator of the association, Ernest launched the "AIDS Is Everyone's Problem" campaign, which encourages society to see treatment of the HIV-positive and AIDS sufferers as a human rights issue. The Association is working with the Uruguayan Congress, labor unions and lawyers to address AIDS sufferers' legal needs, such as property rights and custody issues. Ernesto is also working with labor unions and prisons to address the rights and needs of HIV-positive individuals and to encourage prevention methods. In both cases, he brought workers and administrators into discussions of AIDS carriers' rights and prevention strategies. Because these programs are carried out by volunteer HIV carriers, they implicitly assert the competence and sense of social purpose of those with the disease.
The Association is now an active public educator. It collects information on the AIDS epidemic in Uruguay and challenges other organizations and government agencies to honor their responsibilities to AIDS sufferers. The association organizes self-help groups to work on public education campaigns, thus having HIV-positive people serve as educators. Other public education strategies include magazine and newspaper articles, posters and informational bulletins displayed in local restaurants and bars. Ernesto and other association officers and volunteers participate in numerous panels, discussion fora and conferences and appear regularly in the electronic and print media to urge a change in society's attitudes toward HIV/AIDS sufferers.
The association has not neglected its original mission to provide services to persons who are HIV positive, their families and their friends. Ernesto's organization maintains an information hotline, which already receives more calls than a similar hotline in Argentina (population twenty-eight million). It provides outside references on doctors, legal assistance groups and labor agencies and monitors these organizations to ensure that they provide the care needed by AIDS patients. The Association can thus serve as a comprehensive information center and point of convergence for AIDS sufferers and their families. The group also makes special efforts to nurture the patients who are using the nine beds in Montevideo available for AIDS sufferers.

Ernesto's involvement in HIV-positive/AIDS issues grows in part from his personal situation as a seropositive person. Ernesto's commitment to the betterment of socially and economically isolated groups, however, began much earlier. After his leadership of an Uruguayan student movement during Uruguay's dictatorship led him into exile in Argentina, Ernesto worked with parishes serving mentally handicapped children. As a teacher of crafts, his work with children with mental disabilities in leather and ceramic workshops was particularly well received.
Returning to Uruguay in 1984, Ernesto brought with him the concept of the "therapeutic community." He continued to work with children and adolescents with disabilities, aiming at building a different societal understanding of "normality" as well as helping the disabled function in mainstream society. As a therapeutic companion, Ernesto helped teach children with mental disabilities how to function in daily life; for instance, how to ride a public bus or change a light bulb. He also taught leather working and other crafts, particularly aimed at children with mental disabilities from Montevideo's poorer districts.
Ernesto is now in his forties and his activism and commitment to the AIDS movement is a natural outgrowth of a life dedicated to challenging society's attempts to isolate vulnerable individuals.