There were a couple of times before when I went to a social hygiene clinic to get tested for HIV. They drew my blood and told me to wait for a few minutes for my results. Those few minutes dragged like hours. I finally found the courage to finally get tested, but I guess courage to get tested was not enough; I had to wait and wait and wait for the results.
On those two occasions, I left the clinic before they even called me.
This disabling fear just kept pushing me out of the door.
When one of my closest friends tested HIV positive and was found out to only have a single digit for his CD4 count, I finally decided to get it done and over with.
Indeed, I am HIV-positive. I then sought treatment, and eventually became part of a support group of PLHIV at The Well.
A year passed since I got tested, I have already been to discussions both locally and abroad on the approaches and interventions to the current HIV pandemic. Surprisingly, there are still HIV advocates who claim that the stigma attached with HIV is “necessary”. For these people, there is still that need to encourage fear of HIV and AIDS so that people don’t become complacent.
My priest friend, who is openly living with HIV, shared his experience. “I once had a meeting with a congresswoman in the US. After explaining to her what we did to overcome stigma she said, ‘Well I think stigma is a good thing. It’s a social force to help control behavior’.”
I am just appalled. I could only revisit that crippling fear I felt in those frustrated attempts to confirm my health status in the social hygiene clinics.
My priest friend validated my experience as something expected. “Scare tactics scare people from getting tested, treated, and talking, and not from getting HIV,” he said.
Just recently, a friend sent me a link of a photo from an HIV awareness campaign in their campus in time for the love month of February.
“Edj bet AIDS pud nako (I also don’t like AIDS),” one participant states. I definitely agree to “Be in the know”, just as it’s a big “Yes to AIDS awareness” for me, but most of this photo campaign just reeks (I hope unintended) of stigmatization, highlighting lack not just of awareness but even of knowledge.
I showed the photo to my priest friend and he said: “The photos are fabulous and engaging, and in many ways positive and inclusive, but the messages are wrong. They are messages that build stigma not remove it. Just take the first on ‘Not all positives are good,’ it makes an unintended statement that PLHIV are by definition not good.”
The other photo asks, “What if you were positive?”
I can only say, SO WHAT?!
The messages that say “No to casual sex” and “Make love not sex” greatly mislead. Spreading “love” with no protection increases your risk with HIV infection. Unprotected penetrative sex, may it be a casual encounter or in a committed relationship, is just one of the modes of transmission that increases one’s of risk of transmitting or getting infected with the virus. This message also implies that PLHIV are promiscuous and immoral.
Also saying “not AIDS but love” somehow confuses me. Now that I am living with HIV (or even if I get full blown AIDS), am I in a state of non-love?
I asked my priest friend who are these people who usually agree in promoting stigma. He answered: “Misinformed and conservative people. Stigma does not affect those who are not living with HIV. They belong to the ‘It can’t happen to me’ group. Rather stigma affects those who have been responsible enough to go and get themselves tested.”
In the meetings abroad and locally, I found it quite curious to find people who are not among the key affected populations (KAPs) or even living with the virus who actively speak in behalf of us. I do respect them and I am grateful for their efforts to give voice to people who are afraid to speak for themselves. What I find interesting is that some have become experts of realities that are not their own. Interestingly, it is also some of them who have been openly advocating the need NOT to spread the message that HIV is no longer a death sentence. For them, this is in order to maintain a “healthy amount of caution” among KAPs.
I guess that is to be expected when they don’t have to bear the constant fear of dealing with possible rejection by your significant others or work with your disclosure, or endure the disabling side effects of some antiretrovirals. I guess we could not expect more from some of these desktop HIV advocates who continue to steadily fatten their bank accounts, elaborately decorate their resumes, and lavishly rub elbows with the high ranking technocrats in development agencies while many Filipino PLHIVs barely have enough food to keep their CD4 count up. Who are they actually serving at the end of each day?
In our fight against HIV, I believe it is not in the quantity of efforts that PLHIV and advocates initiate that matter, but it is greatly in the quality of how they are done.
I now increasingly see the need for courageous PLHIV to come out to speak for our own issues. I strongly echo the position of my fellow blood sisters and brothers that confronting HIV in the Philippines is not hide and seek, and to better understand the HIV situation, more than the numbers and statistics, every story matters.
Beware of sending messages that contribute more to the problem. Be more aware. Include us, for we will never stop saying: Nothing about us, without us.