Grassroot Soccer has a practice called ‘My Supporters.’ This
is a really fun practice! It starts the way most team building sessions start;
participants form a tight circle, one participant steps in the middle, closes
their eyes, and "falls" into the circle where their teammates protect them from harm. But it ends in a different way; coaches and players role play "leaving" and "supporting" someone who has HIV.
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Our coaches doing 'My Supporters' at a Development Session. |
A lot of the "leaving" role plays have participants say something along the lines of; "you have HIV! You are a filthy disgrace and I don't want to have anything to do with you!"
This practice leaves participants with two Key Messages:
- In life, everyone needs supporters. Short, sweet, and powerful.
- Stigma (thinking a person or group is bad) and discrimination (treating a person or group unfairly) cause people living with HIV to feel alone and helpless. Also short, also sweet, and also powerful... but while our young participants seem to understand and adopt this Key Message, older generations are not as easily accepting.
After living and working in Kimberley for ten months, I have grown very close with several of our coaches. And some of our coaches really do like me, some of our coaches really do trust me, and some of our coaches really want to share their stories with me. Their stories range from the funny and the ridiculous, to the sad and the troubling. I love hearing coach's stories and I always do my best to be a good listener, to support them in whatever way I can and to keep their stories confidential.
But I would like to share a few stories that I have heard (I did ask the story-tellers if I could share their stories in a "confidential" manner with my friends and family back home). I am not going to name any names and I am keeping some of the details purposefully vague, but I still think the stories will touch you.
Story #1: I am HIV Positive
A coach told me that they are HIV positive. They went on to say, "I am telling you because I can tell that, the way you talk about HIV you know - you really know - that it is not the end of the world. You won't tell anyone else and you would never ever change how you are to me." I was touched. After talking about ARVs with this coach and making sure they were going to their doctor appointments, I couldn't help but ask why they didn't want to share their story with GRS. This coach cut me off mid sentence and ardently declared, "I can't tell them. You see they... they all give the guide and they all say one thing, but you know they don't practice what they preach. And you would see. If I told them, you would see that they would tell everyone my story like it was gossip and they would treat me different. No I won't tell them. I won't."
Story #2: My Dad Gave My Mom HIV
Another coach told me (vague details on purpose) that their father was not faithful to their mother. The father ended up getting HIV and infecting the mother. Our conversation dealt a lot with how the mother was coping and how the coach was feeling, but it was not an unhappy conversation; it was actually full of optimism and hope for the future because their mom left their father and was taking her ARVs. When our talk was wrapping up, I once again found myself asking if this coach wanted to share their story with GRS. "No way," they asserted, "you can't tell them (the coaches) these stories. Even if they have them going on in their life too, when you tell, it's like they are better than you because they can keep on denying it. No they will think they are better than me."
Story #3: We Absolutely Will Not Allow HIV Testing at Our School
We have been running our Skillz Street program at Greenpoint Primary School this term. I picked Greenpoint because it is one of the most economically devastated communities in Kimberley, it is often over-looked by other NGO's and government programs, and it has one of the highest (if not the highest) HIV prevalence rates in the Northern Cape.
Yesterday morning I visited the school with the intention of organizing a Skillz Street HIV Counseling & Testing day. I was quickly told that there would be no HIV testing allowed at the school. Michelle, the wonderful staff member with whom I was speaking, told me, "the parents don't want it."
"Many of them have HIV and they know it! They are taking the ARVs and going to the doctor, but they always say it is for something else. And there are children enrolled in our school who we know have the virus. Many of them don't even hide it - they will come to me and just say, 'Ma'am, I have to go home because I forgot to drink my ARVs.' But the parents they are a different story. They will come pick the children up to go to doctor appointments and tell us things like it's because the child hurt her arm in a car accident or because the child has thin blood and what what. I don't know if it is hard for them to admit it or if they are scared to say it out loud, but many of the parents are in denial and they don't want anything to do with HIV testing."
I understood her concerns perfectly. If they let us host a testing event at the school, some of the parents would unleash all hell.
All three of these stories talked about three of the same things in conjunction with HIV: stigma, discrimination and denial. People living with HIV/ people that have family members living with HIV are stil hesitant to share their stories because they fear that others will stigmatize and discriminate them. And it seems that a lot of people living with HIV, especially among the older generations (30+) are living in denial. For whatever reasons, it is easier for them to say that they have TB, meningitis or cancer - diseases that are perceived as "curable" - than it is for them to admit that they have HIV, a disease that is manageable with ARVs, but for which there is no cure.
Grassroot Soccer works hard to teach youth about the dangers of stigma and discrimination. But we need to do more. We need to reach out to older generations so that the parents, the grandparents, the aunts and the uncles that care for our participants can also begin to break down the stigma and discrimination towards people living with HIV. We need to do more. We need to address a new challenge that these stories introduced to the fight against HIV/AIDS: denial. None of the GRS curriculums address the danger inherent in denying that you are HIV positive. We need to do more.
If you have read this far, I hope you are willing to read just a bit further (my apologies for the lack of pictures, but pictures and confidential stories don't really mix). I would like to share my own story.
My Story: HIV is Not A Death Sentence... So What is it?
Whenever GRS hosts a testing event - whether it is at Skillz Street or whether it is in the community - some coaches want to get an HIV test. And it always amazes me that they are absolutely terrified to see their results.
I get it... in part. I've gotten tested at our events and even though I have no reason to have HIV (as a single lady living in a foreign continent, relationship prospects aren't exactly high), I am scared that my results will be positive. What I don't get though, is that our coaches have access to information and resources that most of the community lacks; they know how to avoid getting HIV (and hopefully are adjusting their behaviors); they know that HIV is not a death sentence; they know other people living with HIV; they know that GRS will accept you, build you up, and show you off to the world as a strong individual fighting to make a difference. And still they are terrified that they will test positive for HIV, that they will be cast out by their friends and family, and that their life will "end" as they know it.
And it's even worse when a participant tests positive. I haven't encountered a single coach who doesn't start bawling on the spot upon hearing that one of their participants is HIV positive. I haven't encountered a single coach who doesn't ask me to tell the child because it's just too much for them. I haven't encountered a single coach who actually seems to believe that living with HIV will not destroy a participant.
And I just don't quite get it... In South Africa, if you are HIV positive, the government will give you free ARVs. The government will give you free counseling and psychological support. The government gives families grants so that they can take their children to their appointments. The government changes school curriculums, providing comprehensive HIV education as well as 'positive living' education. The government is trying to do its part.
Right now the South African government, as well as domestic and international NGO's, are doing all they can to fight HIV in the medical and social spheres. But maybe this isn't enough. I read an
article recently that looked at how free access to ARVs was affecting individuals living with HIV. Prior to 2004, the South African government did not provide free ARVs to people living with HIV (PLHIV). Instead PLHIV were classified as "AIDS-sick" and qualified for disability grants. Because poverty and unemployment are widespread throughout South Africa, these grants became a relied upon to ensure access to food and housing for PLHIV and their families. After ARVs were rolled out, many PLHIV experienced improved health and lost their grant eligibility. The study suggests that although HIV-positive people continued to take their ARVs, they do so in a piece-meal fashion to ensure that they will still receive the disability grants (this is very dangerous because if you don't take ARVs regularly, your strain of HIV can become immune to the medicine you are taking). The study concluded that in order to make "positive living" possible for PLHIV, it is necessary to provide sustainable economic suport in conjunction with ARVs.
Most problems do not exist in an isolated realm and neither does HIV. To stop the spread of HIV, we need to attack it from all angles. We need to continue to fight stigma and discrimination, but we should also start to fight over-looked things such as denial and proper education. We need to continue to focus on HIV-prevention, but why don't we ever try to teach HIV prevention in conjunction with poverty-prevention? In short, it won't be easy (but nothing ever worth doing was easy, right?), but we need to do more.