Everyday is World AIDS Day…Especially in South Africa

Sanibonani,

When was the first time you heard about HIV/AIDS? I first encountered AIDS as a disease through one of my childhood fixations: Beanie Babies. There was a sea green bear with an iridescent rainbow neck ribbon and embroidered with a child’s drawing. The bear was named Ariel, the artist of the drawing who passed away from AIDS at the age of 7 and proceeds went to her family’s pediatric AIDS foundation. Through Ariel the Bear, my knowledge of AIDS was a disease that killed children. The first time I encountered HIV as a topic was during my human growth and development unit in 5th grade where watched Ryan White’s story.

Like most Americans, my initial connotations with HIV was a progressive biological murder. Now, as a Peace Corps Volunteer in South Africa, there is a lesson I have gained in the past 10 months that stands out: Humans Live. Humans do live fully while they are impacted by HIV.

HIV stands for Human Immunodifiency Virus (HIV), because HIV is only found in humans. However the H, now means more to me. Human also reflects the permanent nature of the virus, once you contract HIV it is a part of your existence for the rest of your life. Humans develop humanity, which is how we try to make this messy experience called life less painful for each other. Finally, humans have a concrete understanding of hope, and while I have lost count of the number of people I know who are impacted by HIV in South Africa (the country with the highest number of HIV positive people in the world), they are all hopeful. How do I know? Because they are living and the public health field justifying uses People Living with HIV/AIDS as. The people of South Africa are too familiar with pain and trauma from a variety of sources, but they keep moving forward.

As an HIV Health Extension Volunteer, I see painful things on a regular basis that I cannot share publicly. In part I keep these experiences private out of respect for the individual’s privacy, but there are enough NGOs sharing the “death stories” of HIV. South Africa does not need another foreigner to share pitiful statistics that fuel ignorant tweets. HIV is South Africa’s 24/7 reality and if you dwell on the gloom, you will get burned out. In both community needs assessments, I asked caregivers if there is a point in the year where PLWHIV get sicker. Both times the caregivers’ answered with incredulous glares, because HIV never takes a holiday. PLWHIV in rural South Africa can do well for long periods of time with adequate access to Anti-Retroviral Drugs (ARVs), but still need support to manage their condition.

Today December 1st is World AIDS Day, arguably the most successful of the World Health Organization’s Official Health Days (Most probably do not know the dates of World Tuberculosis Day or World Hepatitis Day). World AIDS Day was created by two American Journalists in 1988 and purposely placed in between US Elections and December merriment. The event stuck and it has remained an annual event with UNAIDS initiated themes. South Africa has been plastered with red ribbons from the SABC anchors to the neighborhood kids wearing droopy and damp school ribbons as they fanned each other on hot afternoon in Amajuba.

HIV prevention is one of PC’s main health thrusts, and today every continent with PCVs present experienced World AIDS’ day Events. Given my situation, I had a low key World AIDS Day where I wore my beaded Ndebele pin crafted by my cohort mates’  host gogo, and briefly thanked the caregivers for their work. The rest of the day I planned for upcoming focus groups and the caregivers continued to fill out their client paper work. There will be district AIDS Day activities for the rest of the week, and we needed to get as much work possible completed. In America, the bright red ribbons will morph into commercial packaging for December merriment but in South Africa (and many other countries) the red ribbons remain painted on walls and printed on health brochures.

As World AIDS Day 2015 evaporates into the suffocating South African night, I want to ask you to contemplate how you first heard of HIV (feel free to share in the comments) and if it shapes your perspectives of PLWHIV. Also, please remember South Africa, other countries, and the global community of PLWHIV beyond December 1st. Biology and stigma do not care about Gregorian calendar dates. For most PLWHIV they will continue to live and struggle between World AIDS Days. As for me, I will keep my pin in a safe place, as there will be other occasions beyond December to show support for PLWHIV, those who have lost loved ones, and people who have dedicated their careers to improving the world for PLWHIV.

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Because Everyday is World AIDS Day in South Africa.

 …When hope returns to this epidemic the ignorance, fear and hatred will begin to subside. So, by showing hope through treatment, we will also address the stigma that surrounds this disease.

– Justice Edwin Cameron, South African Judge and Activist living with HIV

Additional Reading: I tried to keep this brief but for the interested this article articulates the progress made in addressing HIV and also the challenges many countries like South Africa still face.

Caregivers, Camp, & Culture

On my “creative” photos of people.

My photos of people tend to be non-identifying (not National Geographic cover worthy). I support an organization that was founded to provide relief in an area with a significant HIV/AIDS prevalence (ask me about the specific rate after June 15th when the community needs assessment is complete…I am still calculating). My director and I agree that as long as the photos are non-identifying it is okay to blog them. As someone who lives with a medical label that is often misconstrued, I firmly believe that it is not my place to accidentally “out” someone’s diagnosis full stop/period. I also really value privacy and while I ask before posting any photo of people, it is hard to see if they can fully comprehend the potential impacts of having their image online (my isiZulu is not capable of those conversations…yet). I really wish I could share the photos of the Gogos’ disgusted faces with their first taste of American Smores, but it does not feel right. This probably will not be the coolest Peace Corps blog on the internet, but it is not about me. I welcome the challenge to share the South African perspective while maintaining host country nationals’ privacy. Nyigabonga for respecting my decision.

isiZulu word of the post: umnakeleli
isiNgisi: Caregiver
Meaning: An example of the most resilient and knowledgeable South Africans I have been lucky to meet.

My second weekend at site coincided with my org’s camp for primary caregivers of HIV positive children and adolescents. Most caregivers at this camp, were the primary guardians of children who attended a camp for HIV positive children last fall. Everyone cared for an HIV positive child that would have qualified for the camp. My supervisor came up with the idea to have their caregivers to attend a weekend retreat so that they would have the skills the teenagers obtained and a chance to have a camp experience. My roommate obtained a Peace Corps grant to fund this event and I was able to witness the awesome potential of VAST grants (and at that point I was a PCV for less than 15 days). I think I learned more than the caregivers from camp.

Credits to my talented roommate/camp director!

Credits to my talented roommate/camp director!

Like how my American definition of a magazine collage was translated into delicately folding a picture that symbolized something important to the caregiver and using that to cover their notebook.

IMG_0985bThere are magazines printed in Afrikaans and apparently many crafty South Africans.

IMG_1034bEveryone still has a bit of little kid in them when water balloons come out.

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South African S’more Materials: When there are no Graham Crackers (but Tea Biscuits give the same effect)

Most of the caregivers disliked Smores but loved pink marshmallows by themselves.

IMG_1056Nothing can top the magic of isiZulu praise songs and dancing around a campfire.

Yes I can stick an entire s'more in my mouth, it is one of my weird talents that provides entertainment at campfires. This camp was no exception, the caregivers were whipping out the cellphones!

Yes I can stick an entire s’more in my mouth, it is one of my weird talents that provides entertainment at campfires. This camp was no exception, the caregivers were whipping out the cellphones!

And how putting my big mouth to use will always entertain people abroad or stateside!

However, the biggest take away from camp was breaking stereotypes for me. I now know that not all caregivers of HIV positive children are women. Most are but we had a caregiver who was a man who lost his wife to the illness and loved his 12 year old son dearly. Also, not all caregivers are necessarily HIV positive. A lot are due to the nature of the condition, but the big bag of oranges I kept in my room at night were not just for taking ARV (antiretroviral) on a full stomach. They were also for diabetes (or Sugar as they call it in the valley) and high blood pressure. Also I saw how ARVs impact the body. Not my finest moment, but I thought one woman was very pregnant as she was waddling around with a big torso and I was wondering if we had a plan to get her to a hospital if labor started. Thankfully I had enough tact to ask my director in private, who answered that she had a big stomach due to the medication.

IMG_1006The other important take away was the diversity of the AmaZulu within my communities. I can sometimes generalize people based on what language they speak and forget that many concepts are involved in defining culture. While I may reside in a traditional area (In the Berg I have seen pants worn by a woman once…and that was my fashionable 17 year old host sister), My SA 31 friends serving in Msinga, other areas of uThukela, near Richards Bay and Durban probably have very different experiences. We may all attempt to speak isiZulu, but the culture is so diverse.

IMG_1049I could not establish a female caregiver as “traditional” or “modern” whether it was through their ideas or their dress. We had an exercise where the facilitator read off statements about life with HIV and the caregivers had to stand in designated areas of the room to show that they disagreed, agreed, or did not know. My isiZulu comprehension is limited, but I knew there were passionate discussion that ensured when a gogo in a print dress and dukas(head covering) stood in a different area than expected! Similar discussions occurred when younger women in long skirts and dukas had surprising views. Even the younger women who wore leopard prints and tight fits, still wore skirts. It was incredible to watch how each of them contributed knowledge to the group.

IMG_1028bIt is usually viewed as superficial to focus on clothes, but even though South African dresses are not generally made of the dramatic colors of West African batik fabric, but they still create a vibrant story. Within the “Rainbow Nation” there are threads of different colors that bind together the myriad of cultures in South Africa. It was a powerful reminder of the danger of the single story.

The wonderful caregivers and privacy courtesy of the intense South African Sun!

Credit to my talented roommate/camp director: The wonderful caregivers with their certificates and privacy courtesy of the intense South African Sun!