The following post was adapted from a UNICEF article written by Daniela Silva entitled, “Teenagers and Young People Living with HIV/AIDS and UNICEF together for the rights to prevention, protection and participation.”
¨Adolescents and youth who live with HIV have the right to study, work, have a family, and access antiretroviral treatment (ART). We want to be treated as subject to the system of law and not as victims. We are participants; we are much more than HIV/AIDS.”
These words, spoken by 18-year-old José, were met with enthusiastic applause at the 5th National Meeting of Adolescents and Youth Living with HIV/AIDS in Amazonas, Brazil last month. Approximately 120 adolescents and young people living with HIV or AIDS attended. At the meeting, youth participants discussed issues of health care, education, human rights, and political advocacy. Here are some of the stories young participants shared about their experiences:
After suffering severe pneumonia and constant diarrhea, 12-year-old- José received the diagnosis his family so feared: he was HIV-positive. José, now 18 years old, played a major role in planning the 5th National Meeting of Adolescents and Youth Living with HIV/AIDS.
Lucas, 21 years old, was diagnosed with HIV two years ago. Lucas was preparing to join the Air Force when he went to the public health clinic for his physical exam. Lucas remembers the doctor saying to him, “Lucas, you are HIV-positive. But that is not the end of your life; I will send you for other appointments.” Lucas recalls, “It was very hard to tell my family. I hid it for two years, I had to stand it on my own, with no one else to help me. When I had pain, I kept in silence; I would go to the medical station on my own. I was ashamed. I wanted to tell, but I was afraid of discrimination. I even thought of killing myself. I left home three times to live on my own and hide.” Eventually, with the help of a friend, Lucas decided to tell his aunt. “I felt relieved for telling it. My medicines were always hidden. Now my aunt reminds me the time to take the medicine and treats me with care. That was the support I lacked,” he acknowledges.
Melany, 18 years of age, grew up knowing she had HIV. As a child, Melany often faced stigma. She remembers how the parents of her classmates met with her school director and tried to have her banned. The school maintained Melany’s right to remain in class, but many classmates were advised by their parent to stay away from her. “I was helped by my teachers, psychologists and my family. But I am still afraid of the prejudice,” confesses Melany.
Thais, 18 years old, also faced discrimination at school. It was break time when her classmates started shouting she had AIDS and started physically abusing her. The abuse was eventually stopped by a teacher, but Thais refused to go back to school. She spent many years out of school and returned only recently, thanks to the insistence and support of her family.
The National Network of Adolescents and Youth living with HIV/AIDS
These young people and many more are united by the National Network of Adolescents and Youth living with HIV/AIDS. The organization was started three years ago and has already held five national meetings. “Joining the network is the basis for us to accept ourselves, live together with other young people living the same reality and help other young people prevent HIV so they will not suffer the way we do. The quality of life is better when we are all together in the network,” says Melany
UNICEF, along with the Ministry of Health, were the major sponsors of this event. One of UNICEF’s top priorities is to guarantee the right of every child and adolescent to protect themselves, be protected from, and to live healthfully with HIV and AIDS.
“AIDS does not impede us from living, innovating, struggling, creating, studying, working, and dating. We can lead a normal life like anyone else, we have the same rights. I live happily.”-José