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José Luis Rio de JaneiroJose Luis

We’re not less than anybody because we’re positive. It’s a disease like any other.

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My name is Jose Luiz Santos da Silva. I live in a support house in Sao Cristovao, Rio de Janeiro. I have been HIV-positive for about a year and six months.

As a person living with HIV/AIDS I am not smaller than others, not intellectually, not physically, not as a citizen. Unfortunately, because HIV is a sexually transmitted disease people have this block and don’t accept it, because talking about sex is bad, it’s shameful, even if doing it isn’t.

Activism has given me this inner strength, despite being abandoned by my partner, despite being unemployed, and living with a monthly pension of R$62 [approx. $35USD]. Considering that living on the minimum wage is hard, being R$465, imagine with R$62. But here we are living, fighting, and we don’t lose sight of things, neither the bad things nor the good things.

What I can say to everyone is that we have to live, everyday. We’re not less than anybody because we’re positive. It’s a disease like any other.

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I was born in the far South of the country, in Canoas, Rio Grande do Sul. It is an agricultural estate, recently industrialized. My mother was a housekeeper but she used to say, out of shame, that she was a secretary. I only saw my mother every 15 days. A neighbour would look after me most of the time.

My mother taught me how to read and write—she used to bring me books from the houses where she worked. At school they wanted me to go straight to the third grade because I read so well and I could do sums, but my mother insisted I start from the beginning to make sure I socialized with other kids and experienced diversity.

One day she told me she was going on a trip, a trip with no return. She said everybody eventually went on this trip. At the time I didn’t understand. She said that if I stayed with my father I would be no longer able to go to school. So my godfather, who at the time was a colonel in the Brazilian Air Force (FAB) and without children of his own, declared me as his relative. I got into the armed forces without taking any exams.

My mother died of cancer when I was 8. My father was nowhere to be found. I had to bury my own mother. It was a terrible experience; I was in tatters. My mother was my father, my mother, my friend.

I went on studying. I finished 3rd place in the military school and because of that I was admitted to military academy. I took an entrance exam in Law and I got a place, so I left the army and went on to study law instead.

In November 1993, I moved to Salvador, Bahia where I worked as a receptionist in a hotel until I got a job in law. I met Debora, and we moved in together, and lived together for eight years. She found out she was pregnant and we got married. At the time she was studying pharmacy and I was working.

My daughter was born with encephalitis. She lived for a week, which is considered a long time for such a condition. We could not handle this and we separated because of it.

I moved back to Rio to try for a Masters Degree in Criminal Law. Then I met someone, and we lived for 5 years together. She had rheumatic arthritis and was bipolar and there was no specialized treatment available for either. At university I got her some assistance on both conditions.

During this time, I went to donate blood to a neighbours’ granddaughter. She used to hide her granddaughter, who was HIV-positive from birth. Her mother had caught it from her husband, who was a regular drug user. Both of the girl’s parents were already dead.

So I went to donate blood and I got the news I was positive.

I demanded a second opinion, and it took a long time for the results to come through. Eventually it turned out that the second result was also positive.

When I found out that this was it, that I could not fight against, I realised I had to be proactive. My only fear was my partner’s reaction. I went out, got drunk, and went home. I couldn’t sleep. When my partner woke up I told her. She stared at me for five, ten minutes. Didn’t say anything, didn’t cry.

I asked her, “So?”

She said, “Paqueta Street, number 72.” That was our address.

I asked her what she meant and she said, “We are together to the end.”

But I didn’t really feel that she meant what she said.

That day I went out to think it over, did not drink. I knew she would not cope even though I shared it with her. When I got home that night all my clothes were in the guest room.

That was on Thursday. On Tuesday the week after she told me she could not cope, socially, emotionally. When people would start to see that I was losing weight, that I had AIDS, she would be discriminated against in her hometown. She asked me to leave. All my savings had been spent on her; I had no resources left. She did not even help me pack. I did it on my own, and ended up staying in the Novo Rio bus terminal in Rio for 36 days.

I realised that to be proactive against AIDS, I had to do it myself. I had to get out of it. I went to a local shelter, and tried until I got a place. I went back to the doctor in the meantime, to have more tests and as a consequence, in December 2007 I got the bad news that I needed to take AZT.

I went to a seminar in Brasilia, where I met a beautiful girl, both on the inside and on outside. We stayed in touch through the Internet, MSN, and over the phone. In February 2008 I contracted pneumonia, and I was left very weak. A friend told her that I was being badly treated, unable to get proper medication or food and that the doctor was worried about me. She was worried and flew all the way from the South to come to see me. She took me to Porto Alegre for 25 days, to look after me. She fed me and we sunbathed—the appropriate way to be looked after in such condition. On my return, nobody recognised me, telling me how well I looked, that I had put on weight.

Eventually her family found out I was positive, and put a lot of pressure on her. She gave in and ended the relationship.

I really wanted to take part in this project, because this is my fight. I think it is better to say your HIV status straight way. Even with the experiences I have had, of telling it and losing people, there is no point hiding it. That is what I believe.

I used to have friends in well-established jobs, and I used to go on holidays with them everywhere around Rio. But when they found out I was positive, they walked away.
Nowadays I am on the other side of Rio. It’s different of course.

It’s hard to live in the Republica area. I live in a support house located between the communities of Mangueria and Tuiutí, and drug traffic is in charge over there, not the state. There, instead of buying food, people buy alcohol. Me, instead of buying alcohol, I buy a newspaper. I enjoy going to the library, to the theatre, to the movies. Before, when I could afford them, I used to buy a book a month in the various subjects I am interested in: law, social sciences, and anthropology. Nowadays I cannot afford them, but I see this as my motivation to overcome all these obstacles.

I want to reignite my career. I am about to register with a government project called “My Home, My Life” to find a home for myself and start again. I would like to work assisting HIV-positive people who do not have the same access to information as I do, to teach them their rights. I will take the best from both sides of my life and when I settle down I will help others so I can feel useful.

My mother was a 165m, self-taught, black woman, and she suffered for that, she was beaten up. As a housekeeper she had no union, no pension, and she worked day in and day out. She told me the greatest treasure a man can have is his intellect, his knowledge, and that I had to use mine, to know how to be in a palace or in a slum. She knew that that was the basis and the balance of the diversity of life.

This I can say to all HIV-positive people in the whole world who are seeing me in these photos and in this text, that the most important thing is to be alive, to have your faculties, your own senses. I think, I reason, and this is very important.

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