This very traditional Catholic South American country of approximately 11.5 million, would hardly tolerate their country's version of an "ACT UP," or "Queer Nation." While trying not to compare Ecuador's awareness of AIDS based on American criteria, I simply could not see how women and HIV/AIDS would reach the public health arena. Which group most heavily impacted by HIV would be the first to demand that the Ecuadorian Ministry of Public Health address the issue? It couldn't be Ecuadorian gay men; homosexuality is illegal there. It would not be an Ecuadorian lesbian concerned about HIV, lesbianism is also against the law, and completely invisible.
I wondered how marginal groups such as female sex workers or transvestites would suddenly come forth and demand both recognition of their plight, and treatment for HIV at the same time. With a disease shrouded in irrational fear and denial, what Ecuadorian living with HIV would openly say so?
I decided to work harder looking for materials and funding to implement a Peace Corps sponsored conference on women and HIV. I had been working in conjunction with a well-known Ecuadorian family planning agency. This particular organization had decided to incorporate HIV/AIDS into a 2-day workshop on women, sexuality and STDs. The workshop coordinator generously invited me to facilitate a session on AIDS. Though my Spanish was decent, facilitating a workshop to an audience in their first tongue and my second language, was cause for butterflies.
All was going well at the workshop when the facilitator called for a 10 minute break. I went outside and lit a cigarette to calm my nerves. I was by myself. A young woman, casually dressed, cautiously strolled toward me. Not recognizing her, I assumed she would come closer, realize she had mistaken me for someone else, and walk away. She came to my side and said, "Excuse me, but my name is Sra. Delia and I would like to stay for the workshop, but I can't because I am having problems at my job, and I'm infected."
She was from a region in Ecuador where the accent is markedly different. I thought perhaps that I had misunderstood her. I was still not willing to believe my ears. We had never seen each other before. Was she telling me she was HIV positive without realizing she was talking to a total stranger? I looked at her and glanced around the lounge area, assuring myself that I was indeed her intended audience. I turned back to her pained face. I pulled her gently to the side and quietly asked her, "What did you say to me?" She repeated her tale that her name was Sra. Delia, that due to some problems at work she was unable to remain for the entire workshop, and that she was infected. For a variety of reasons I could only assume that she was referring to HIV and not to some other STD.
I had no idea how to respond. I was very aware of how difficult her life must be to feel that she had to tell a complete stranger that she was infected. In that instant it did not matter that I was a Peace Corps Volunteer, that she was Ecuadorian, that I am African-American and she was mestiza a mix of Indigenous and Spanish-European blood). We were two women, and she had a secret that she must have been bursting at the seams to tell someone. She must have known I was not from Ecuador.
In a conservative country where HIV/AIDS causes much shame, denial, and repugnance among many Ecuadorians (as it still does in parts of the United States), and in a country where people aren't as mobile as Americans, telling someone that you are HIV infected is for the most part, not done. I saw her silent anguish, and the question in her eyes was clearly, "Can you do something .. anything?". What does one say to an HIV infected woman in a country where the overwhelming majority has no idea that AIDS is not a gringo and/or gay - from the U.S. or Europe - disease? She stood there, quietly and expectantly while I searched for something comforting and soothing to say. Somehow, "Gee, I'm sorry to hear that, and how's your T-cell count today?" sounded woefully inadequate.
As I fumbled, the workshop facilitator announced that it was time to reconvene. I did the only thing I could think of. I asked her if she had a pen. I wrote down my name, the Peace Corps address and phone number and told her, "Listen, Sra. Delia, please call or better yet, write me." I asked her if there was a way that I could write or call her. She said no, that she did not have an address and the only phone available was at the corner store of her neighborhood.
Mail service in Ecuador can be arbitrary and disappearing parcels are common. I realized that neither one of us had a way to speak privately about this issue. I had a million questions to ask her about her HIV status and how she was coping with the illness.
The fact that she'd just told a complete stranger that she was HIV positive told me that she was obviously carrying a heavy weight. How did she find out that she was HIV positive? I asked her again to please write to me at my Peace Corps address. She promised to do so, and immediately disappeared into the crowd.
I returned to the workshop quite distracted. My anxieties about facilitating paled in comparison to thinking about this young woman living with HIV. At least in some areas in the United States there is substantial awareness, even though AIDS remains a disease full of stigma and negative connotations. Support groups are available, counseling services exist, free and anonymous testing is widespread, and clinical trials to test new therapies are available in many cities.
I am well-educated about women and HIV and should, and do know better. Yet, it bothered me that the question I wanted to know was "how did you become infected?" Why should it matter, and what is it that I am looking for when I ask?
All I knew is, if she needed a compassionate ear, she had surely picked the right stranger. Maybe I would have a chance to help, if she would let me come visit her.
I promised myself not to be pushy, though my curiosity was unsettled. First, I would give her a chance to write me. Who knew what would come of this? I sensed that I needed to give her time to think about the fact that she had just told someone she was HIV infected.
Given the rather unprecedented manner in which Sra. Delia told me her HIV status, it only made me wonder how some of her friends and family might have responded to that news. I wondered if she was receiving any support. And I thought about how horrible it must be and the emotional toll exacted when, for one's own safety, it is easier to be quiet about an illness than to seek care and support.
I hoped she would stay in contact. I had no doubt there was much she could tell me about living with HIV in her country. I hoped to see her again. Most of all, I hoped that she was okay. At least, as well as could be expected.
... the story continues ...