My name is Cazu Barros, I am 36 years old. I live in Copacabana, Rio de Janeiro. I’ve lived with HIV for the past 20 years.
Living with HIV I have built many things that I had never thought I would build. Everything I have ever achieved, I achieved since I became HIV-positive—public recognition, great roles both in the cinema and in the theatre. This has given me the strength to encourage more people with HIV to take the same stand: “I am HIV positive and I won’t give up on my goals. If something is not working out, I can change it and find a way out.” That is what I did.
What made me go public about AIDS was the need to break the stigma that people living with AIDS are ugly, that they are unproductive and that they must be isolated or treated like wretches. People living with AIDS will remain who they were independent of HIV. Those who were good people will remain good people, and the same goes for those who weren’t. Independently of having HIV or not people are still human beings, they still have feelings, they love, suffer, cry and laugh.
HIV didn’t change my way of life. I have to include the discipline of taking medication, and I started living more. Death left my subconscious and entered my conscious. But in no way can HIV get in the way of life. May people live life independently of being positive or negative, may they be happy, build their life projects, continue their studies, continue working, continue loving. Because HIV shouldn’t be stronger than life.
I met Cazuza when I was 14 years old. He was a singer, adored by the Brazilian public. It was in the beginning of Brazilian rock. I started to follow his career as a fan. I met other fans and we used to go to his gigs together, following his band, Barao Vermelho. At the time, no one ever heard about AIDS in Brazil. We were far from knowing it, and far from knowing that Cazuza himself was already infected by then.
He used to hang out at the Arpoador—a very popular place amongst people in Rio. By hanging out there I got closer to him. Once we had developed a friendship, there were rumours that he had AIDS. He got worse, and by the time he opened up about it he was already very ill. He flew to Boston, then came back to Brazil, gave his last concert at Canecao in 1987, and died.
It’s funny to think about it, because I never thought that one day I would be in his shoes, be infected with HIV.
At the time, AIDS was being spoken of as some sort of “gay plague”. I was 14 years old, straight and didn’t do drugs. I was not part of the risk pool. Since Cazuza was an artist, and we appreciated his work, once we found out he was HIV-positive it did not affect our relationship. We were a bit afraid, but I believed I was protected because I was not homosexual. “Only gay people get AIDS? Then there is no problem to talk to Cazuza, or to touch him.” I was sure that because I was not gay, there was no risk.
After Cazuza died, people in Brazil started to talk about AIDS, there were campaigns and more information available, the risk pool increased, but I was still out of it. First it was gay people, then the haemophilic, then drug users, prostitutes. I was young, single and straight. I was protected.
That was when I met my biggest love, Sandra, at a Guns ‘N’ Roses concert. I was 16 going on 17, and she was 21 and much more experienced that I was. We were together for six months, three months of which I was nursing her through her illness. We did not have a clue that she had AIDS. She had the flu, which turned into pneumonia, and then double pneumonia. Not even the doctors suspected that she had AIDS. At the time, heterosexual men were considered out of the risk pool, and women even more so.
She only received a diagnosis when she went to the United States, where her father lived. Since her type of pneumonia was a type commonly associated with people with HIV—pneumocystis carinii—the doctor asked for HIV tests to be done, and the results came back positive. It was a late diagnosis, and I found out about it when she died, three months after she left. Her parents phoned me to tell me about it, that it was AIDS. We had suspected, but there were no tests available in Brazil at the time. It was hard for us over here.
She started to suspect it was AIDS because of her drug use. She had friends who came over from the US and brought heroin with them, and I ended up using it with her. She had done it before, but I hadn’t. I had a few drinks, and a joint, it was rock gig, crazy stuff, but there was no mention of AIDS at the concert, no campaign, no posters or leaflets. We were young, following our impulses, and that was when I tried it with her. From that I could already guess my diagnosis as HIV-positive as well.
I had the test done a year after she died, because I was scared of dying, even though I did not feel there was anything wrong. The one thing everyone knew about AIDS, was that if you had it, you were going to die. Freddie Mercury announced he had AIDS on a Saturday, then the following Sunday he died. All this got me thinking, I had to know whether I had it or not.
I had seven tests done. They all came positive. Still, I did not believe I was HIV-positive and I did more tests, in private labs, public hospitals, through my health care, then again at the public hospitals and so on. I did not believe it, and at the time, we knew nothing about it.
When I got my result, I asked the doctor how much longer I would live. The doctor told me, “Nowadays people live for about six months.”
What was I going to do with six months to live? I was 17 years old. My world crumbled around me.
Things got very complicated. I had my test done on the health care plan from work, and it was common at the time for the health care company to pass the results on to the company’s boss. It was then that I started suffering from the prejudice and the stigma associated with AIDS. They put me on holiday, then on a type of benefit offered for workers when they are taken ill. They are taken off work and the government is responsible for their pay. I was forced to retire. I was nineteen and about to be promoted to assistant manager in a Brazilian fast food company.
When the news that I had HIV started to make the rounds within the company, my co-workers threatened to quit en masse. I was not allowed to have contact with anyone. But in spite of not being well informed about it, I decided to sue the company, because I knew that having HIV it was not reason enough to be treated that way, to be rejected and retired.
It was horrible when I tried to get my retirement. I was a young man, and I had to queue in a public hospital, with all those older people, or the disabled—people who were visibly due for retirement. The people in the queue found it strange and would tease me about it, “What are you doing here?” or, “What’s the matter with you?” I was constantly being harassed by everyone in the queue, for they either thought I was in the wrong queue, or about to claim the wrong benefit. Then one day, I was in a foul mood, and they started at it again, “What’s the matter with you?” and I shouted back at them, “For fucks sake, I got AIDS!”
It was funny then, because the queue was huge but then everyone disappeared. Great. I was the only one there and got my appointment straight away.
Eventually the doctor asked me, “Do you feel anything wrong? Do you have a temperature?” I said no, that I was fine. He asked me if I wished to go back to work, and I said it was what I wanted the most. I was five months away from work already and I could not stand hanging out at the beach any longer. I wanted to go back to work and get my life back on track. I was being treated like an invalid, like a monster and wherever I went people would go, “Ah! AIDS.” It was horrible.
The doctor then declared me fit to work, and I went back to my job.
Then the company wanted to fire me, to negotiate with me. I said I would not sign anything, and told them I would get a lawyer. I met a lawyer though Pela Vida, which had just been founded by Herbert Daniel. Her name was Miriam Ventura and she was well known by everyone at ABIA. At the end, we all came to an agreement. It was not exactly what I’d expected, but at the time it was ideal.
Workers wanted to quit their jobs because of me. No one wanted me working with them at the office. There were two other workers in the company who found out they were HIV-positive who ended up dying within three months of finding it out. My boss believed I was going to die in three months as well, and told me, “You go home. Don’t you ever show up here again. We will pay for your treatment and your salary, along with all your working benefits. You will come here once a month only to sign your paycheck. We don’t want you back here again.”
I looked over to the lawyer and said, no. I wanted to take them on. I was about to be promoted, and I wanted my career to go on as usual. I wanted to settle down, and not be viewed as an invalid. If the doctor had declared me fit for work, why did they want me out of the job?
The lawyer said, “Cazu, accept what they are offering.”
And the situation continues this way to this day. I am a ghost worker. It has been twenty years since. I am not dead. I thought I would die in six months, but I didn’t. The doctor who diagnosed me is dead, a lot of people have died, and I am still here.
In 1998, there was new management at the company. The new manager found out about me and asked me to go back to work. It was the worst thing he could have done. He tried to fix the situation and made it a mess all over again. He was like, “I know of your situation. That was inhumane, and we are going to try and reverse this. We would like you to come back to work with us, in the office.”
And I said, “Okay, this is what I want the most, but what are the conditions?”
And this is what he told me, “You are not going back to your usual post at the shop. You are not going to deal with customers or co-workers because if you do, you will have to enter the walk-in fridge, or deal with fried food. You can even cut yourself helping someone.” He came up with all these day-to-day situations at work that could not bring any risk to anyone.
They prepared a special room for me, made of acrylic, and I would be in that room making photocopies of their paperwork. They would place the documents to be copied in one end, and I would hand them the copies out another—without any human contact. I looked around that room, like a glass dome, and I said, “So this where I am going to work? You come and tell me that the company’s attitude has changed, but this is even worst. Before there was no information about it, but today there is. For you to ask me to do this, you can go and talk to my lawyer.”
The company’s lawyer told me I could not refuse their offer or I would be sacked. I said, “Well, I refuse. Fire me. You are dealing with working laws that are out-of-date. I know what’s going on right now, especially regarding people living with HIV. You are talking bullshit. If you want to fight, we will.”
The manager asked the lawyer to leave, and told me, “We are not going to fight then. Let’s leave everything as it is. You can go on with your work at the FBB (Brazilian Federation of Pioneers) educating young people, and we will keep on paying you as a way for the company to contribute to society by paying you to work voluntarily within the NGO.”
I said, “Perfect!” And that is how it’s been to this day.
My relationship with the company today is very good, although they have never called me back to work, and I have never asked to go back. It’s fine the way it is. I could never work there again. My life has changed. I was somewhat forced into a new direction. I only go back there once a month to sign my paycheck.
The first time I had to speak out I was kind of coerced into doing it, due to my work situation. The company is a major one here in Brazil. I don’t know how, but it ended up in the press. I was also inspired by Cazuza. He was the first Brazilian artist to go on TV and say, “I have AIDS.” It was necessary to make it clear what a person with HIV is like. I wanted to show that it is possible to have a good life being HIV-positive, that by having HIV you are not a monster, a low-life. That you can be a good person, alive, productive, paying your bills.
The public encouraged me to keep being public. The day after I appeared on TV, my neighbours, people down the street, they all recognize me and said how good the interview was. They asked me, “Do you really have AIDS?” or, “What do you mean you have AIDS? You don’t look like it.” At the time I gave this interview I had been HIV-positive for eight years. I have always done sports, surfing, played football, everything an average person does. I live my life, a normal life.
The most recent campaign I did was a campaign held in all Portuguese-speaking countries called “Life Is Stronger than AIDS” by the Brazilian Ministry of Health. The aim of the campaign and my own aim was to show everyone that people with AIDS are just people, not people living with AIDS, just people. This caused a huge impact because, even after all these years and various campaigns, the perception of a person living with HIV as a terminally ill person persists today. The campaign’s aim was to change that.
At the time, I had been HIV-positive for 17 years, and in the campaign that is made very clear. This brought a new concern to people, “If this guy has AIDS and looks like that, I could also have AIDS, from having sex without condoms or any other risky situation where I did not protect myself. I’ve never had the test done.” This campaign caused a shift in people’s attitudes. The government has told me that there was a 20% increase in the public demand for tests.
Today I am here, doing my work, living my life, socially, culturally, my love life, doing everything a person should do. HIV hasn’t changed a thing, in spite of society’s persistence in saying that people with HIV are not able to produce, to live.
I believe that by telling people I have AIDS, and by being a decent person, I am doing my bit for prevention. I have managed to prove to society wrong—society that initially told me I was a good-for-nothing, that I should go home and wait for death to knock on my door. I proved them wrong by saying, “No! I am useful and productive, and I can go on living my life, whether you like it or not.”