The different faces of courage

Advocates boldly state their experiences regarding HIV

In a public health clinic in Manila where one can get tested for sexually transmitted diseases including HIV, there is a poster that reads: “This is what someone who can be infected by HIV looks like.” Under this sign is a mirror.

It is a simple but accurate reminder that anyone can be infected by Human Immunodeficiency Virus (HIV), which causes Acquired Immune Deficiency Syndrome (AIDS). According to global statistics published in December 2009 by the Joint UN Program on HIV/AIDS (UNAIDS), since the beginning of the epidemic, almost 60 million people have been infected with HIV and 25 million people have died of HIV-related causes.

According to the AIDS Accountability International Foundation, a global study called “The Scorecard on Women” found that AIDS is now the leading cause of death among women of reproductive age.

The Philippines is still considered a low incidence country with an estimated number of HIV cases amounting to 4,218 registered with the Department of Health’s Philippine HIV and AIDS Registry, as of October 2009.

The numbers may be considered small, and it is easy to continue thinking that HIV/ AIDS happens only in other countries.

But to these advocates whose photos appear here, HIV has a face, albeit in many forms: stigma, discrimination, and sometimes, theirs if they are living with HIV, or that of someone they love who has succumbed to AIDS.

Wearing nothing but the AIDS ribbon, the universally recognized icon of support and empathy for the cause, these advocates have boldly come out to share their personal stories about how they have come face to face with HIV.

They are not professional models. It is their courage—and not any benchmark of physical beauty—that makes them deserving of pictures. And it is their actual life experiences with HIV that has revealed their courage. These men and women know what they are talking about.

The right to live free from stigma and discrimination

It was a year ago when Wanggo Gallaga appeared on national television and disclosed his HIV status. Until now, Gallaga says he continues to get a lot of questions on his social networking site. “Some people even seem to have opened an account just to ask me things like: I had unprotected sex and now I’m beginning to feel sick. Is that how you felt?” he says.

Such questions underscore the need for better access to information on HIV/AIDS, which Gallaga hopes to help address by sharing his own experience with as many people as possible.

“Often times, I am introduced to people and when they hear my name, they tell me they know who I am and that they are proud of what I did. It still amazes me how what I’ve done has affected people. But the best support I get is the fact that I am not treated any differently. I have not been given special treatment and must carry my own weight as before.”

Most important to Gallaga is the difference that personally knowing someone living with HIV makes in others.

“People have told me that my disclosure has helped them realize that it can happen to anyone and that if they have the same lifestyle as I used to have, they are at risk. Some people have told me that they have begun to take better precautions while others have found the courage to take the test. I’ve spoken to a few people who are living with the disease and have started to open up about their condition to close friends and family. To stop living with the secret—I think that’s important as well.”

The right to be free from discrimination at work

It was in Dubai when Jericho Paterno first found out that he was HIV positive. It was a surprise and an unfortunate turn of events for Paterno who dreamt of working abroad to give his family a better life.

“I took the HIV test as part of a preemployment requirement. I was surprised to find that I tested positive. I had never shown signs of being sick,” he recalls. There was little time for Paterno to get over his initial shock, he was immediately quarantined and deported back to the Philippines.

“I was frightened. I knew very little about HIV, and confused it with AIDS. I thought I didn’t have long to live.”

The Coordination of Action Research on AIDS and Mobility (CARAM Asia), a regional nongovernment organization that works on health issues, calls the policy and practice of mandatory testing for migrant workers “discriminatory, dehumanizing and violates migrants’ rights.”

Paterno himself has played an active role in advocating migrant workers’ rights as a member of Pinoy Plus. Paterno has been invited to various international HIV/AIDS conferences in Switzerland and Indonesia to speak about his experience.

“Mandatory testing is just one of the forms of discrimination people living with HIV/AIDS face, there are many others,” opines Paterno.

The right to be responsible for your actions

Carlos Celdran’s youth was marked by living a carefree life in New York City, which he discloses included a bi-sexual lifestyle.

“I was living and working in New York in the 1990s. Back then when you met someone at a bar, the line of questioning was always: ‘What’s your name? What do you do? Where do you live? And are you HIV positive?’ We might have been bit promiscuous, but always careful and used condoms.”

Celdran continues, “There are a lot of advancements that have been made in the field of HIV/AIDS in the last decade, and it’s true that the infection is no longer a death sentence, but it’s not something to be taken lightly either. There are a lot of young people now who don’t protect themselves because they are ignorant or complacent.”

“Don’t be ignorant about HIV; not only to protect yourself, but also the ones around you. HIV affects everyone you love and who love you back.”

The right to voluntary testing and counseling

In 2005, a friend of Romina Nanagas had an “AIDS scare.” He asked her to go with him to get tested.

Being at a STD testing center was not at all what Nanagas thought it would be. “I was really scared. I had this image of the staff immediately judging us as ‘dirty’ or promiscuous, but they were very gentle when they talked to us about our lifestyle choices. They gave us brochures and told us to think about it [getting test] first.”

The professionalism and sensitivity of the counseling made testing and subsequently waiting for the results easier. Nanagas and her friend were relieved to find that he was negative.

Looking back at this experience, Nanagas says, “My friend regularly gets tested now just to be safe. He’s a lot more careful and more knowledgeable. I admire my friend’s bravery in openly telling others, ‘Yes, I got tested for AIDS and you should do the same.’”

In relation to her own life, Nanagas explains, “I’m in PR [public relations]—a business of changing perceptions and building images. HIV/AIDS is a cause where right now, a change of perception about something like getting tested may be life-saving. There’s a misconceptions that HIV/AIDS is a ‘gay disease.’ It’s these misconceptions that make straight people think they don’t need to get tested.”

The right to be free of judgment

Having lived in the US for most of his life, Vince Golangco was certainly exposed to and knowledgeable about messages on HIV/AIDS prevention. “But I did not know anyone who’s living with HIV or AIDS.”

That changed in 2006 when a friend suddenly confided that he had just been diagnosed as HIV positive.

“I was really caught off-guard because there was nothing to indicate that my friend was even sick.”

Despite the knowledge that he had about HIV/AIDS, Golangco realized that there was one thing that he did not know: “What do you say when someone you care about tells you they’re HIV positive?”

And even more dumb-founding for Vince was what not to say. “I wanted to ask, “What now?” and “How serious is it? Or “How much longer do you have?” In the end, Vince decided to just listen and be nonjudgmental because “it seemed to me that he really needed someone to talk to.”

When asked if he was afraid that his being in the photo shoot would create doubts about his sexual orientation, he answered, “No. If people see my picture here and judge then may be they should reeducate themselves on HIV/AIDS, too. It can affect anyone. And I’d like to think I’m doing this for my friend. Doing this will show him that he has my support even from here.”

The right to adequate health support and services

When AJ came back to Manila after a year overseas, the last thing he expected was to receive an e-mail requesting financial assistance to defray his friend’s hospital expenses.

AJ says, “Vin was healthy, a tri-athlete even. I didn’t ask questions. Vin was my friend. I didn’t need to know all the details in order to help.”

“Once when talking to another friend, she said, ‘It is really so difficult when it is AIDS’—pertaining to Vin’s physical pain. I was shocked. Until then, I had no idea what Vin was sick of.”

“When Vin was gone, many questions went through my mind: When did he know he was sick? Were there times when he needed someone to talk to? When was the last time that I saw him and what did we talk about? Did I get to tell him everything I should have said? Because now, I can’t.”

“Vin was the first person with HIV/AIDS I knew who has passed on. I have never before posed publicly for the cameras, but I am doing this now, in memory of a dear friend’s life that was short, but well-lived.”

The right to sexual orientation and gender

Every year, the LGBT (lesbian, gay, bi-sexual and transgender) community takes to the streets for Pride March for two reasons: to continue rallying for their human rights of and to celebrate LGBT life and culture.

Dee, co-founder of the Society of Transsexual Women of the Philippines (STRAP), talks about the reason why she walks in Pride marches. “When I first started to manifest my real gender expression, I was fired from my job and in my desperation to find another I applied for those that were way below my qualifications.”

Her academic credentials and professional experience as a manager were overshadowed by the disparity between the gender on her birth certificate and the gender she chose to express. Lucky for Dee, she found an equal opportunity employer whom she has been with for the last six years. “Society stereotypes us as entertainers, salon personnel, comediennes or prostitutes. There is nothing wrong with these professions,” Dee says, “I just dream of a different one, like everyone else.”

Naomi concurs with this, “When you decide to change something that people think is fundamentally immutable, like gender, you trouble their sense of certainty and stability. Quietly or blatantly, they will resent you for it; or worse they will punish you for it. It is this policing and punishing because of gender expression that marginalizes people like me. Years of discrimination impair our sense of self-worth and many of us agree to this convenient arrangement—us in the margins, the rest of society living a good life.”

Queersilver speaks about the discrimination she faces and which she, as a member of Lesbian Advocates of the Philippines, fights. “We lesbians are a double minority—we’re women and we’re lesbians,” says Queersilver, who stresses that this is the one reason why lesbians are often overlooked when it comes to HIV/AIDS intervention programs. “The WSW [Women who have Sex with Women] may be a low [HIV] incidence group, but we nonetheless should have access to adequate and proper information about how to protect ourselves.” –ANA SANTOS CONTRIBUTOR, Manila Times