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From Shock to Action

Brazilian Activist Demands Rights

Forty-four-year-old Silvia Almeida is a telephone operator in São Paulo and a passionate advocate for the rights of HIV-positive individuals. Working with activists like Silvia, EngenderHealth advises the government and local organizations to address the needs and rights of HIV-positive women and leads a movement to improve the lives of people living with HIV in Brazil and beyond.

When I discovered that I had HIV, it was a very hard blow—I was paralyzed with shock. I found out in 1994, after having been married for 14 years. My husband became ill and died soon after. When I realized I was also HIV-positive, my first reaction was a total loss of direction, of great hurt, of indignation. I, who had always thought of myself as completely outside of the so-called “risk group,” suddenly found out that being in a stable relationship did not mean that I was protected. At that time, my son Felipe was only 1 year old and the doctor recommended that he should be tested too. I received the two results together, mine and his. At that moment, I was overwhelmed by tremendous anxiety. I thought of the future, of the prejudice there would be. But I was glad when I got the results, because my son did not have the virus.

Still, I got panicky; I was afraid that my children might be left alone in the world. At first, I didn't say anything to my family about my status. Later, I told them that I had been infected by my husband, and members of the family were supportive and understanding. But that doesn't mean that I didn't suffer from prejudice.

After I got over the initial shock, I started to look for ways to take care of myself, both physically and emotionally. I found strength that I didn't know I had. And I became an activist. I joined a group called “Incentive for Living,” run by people with HIV, and have been actively involved ever since. I speak out whenever I can, especially on radio and television, to confront HIV-related prejudice and to empower women living with HIV.  I’ve realized that the risk of contracting HIV is very serious for people who keep me at a distance, because their fear makes them very vulnerable.  

In Brazil, we have made a lot of progress in terms of our rights. We have access to antiretrovirals free of charge in the public health services. Obviously, that is mainly due to the social movements, which have been very strong here and still are. The work that EngenderHealth is doing has helped me reflect on other issues related to being HIV-positive. Projects looking for ways to improve the quality of life of women and girls living with HIV and AIDS are so important, especially when we remember that their sexual and reproductive rights are frequently violated. Even now, many health professionals still do not respect the right of a woman living with HIV to be a mother.

Another very delicate point is that people living with HIV or AIDS still have their libido, their desires, and the right to a normal sex life. The virus does not destroy our wish to love and be loved, to show affection and receive it, to feel pleasure, and so on. Doctors and nurses often treat infected people as if we no longer had the right to keep up an active sex life, and this attitude leads many HIV-positive people to become depressed and sick. Making everyone understand these rights is a great challenge that must be met.

In Brazil, we have good projects and good policies, but these policies don't always reach the people who actually deal with the women in the health system. We know that in some parts of the country, access to care is still inadequate. For example, we know very little about what happens to indigenous women living with HIV; what we do know is that they are struggling against great odds for good-quality services. Indeed, in practice it is not easy to enforce human rights in general, even though they are guaranteed by our Constitution.

Our greatest challenge lies in the process of empowering women themselves. Gender inequality still exists in our country, and if it is difficult for a woman who does not have HIV to have her rights respected, imagine what it's like for women living with HIV and AIDS. But if we continue to make progress, I believe Brazil, with its strong social activists, can be a good example for the world.

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