I went to visit the TB-HIV peer educators for the first time since the training back in September. They’ve been on the job for more than a month now, submitted their first monthly reports, and it was time for a check in. After two afternoons and two dusty, bouncy, sweaty SUV rides along unpaved roads to two clinics, I am drained. I love them, but they drain me. Their hard work, creativity and proactiveness has inspired me and defied my expectations. They work hours well beyond what’s expected of them, and they are paid the same stipend regardless. They stand as proud role models for their peers, opening accepting and discussing their own HIV status in hopes of inspiring patients towards successful treatment. I almost can’t imagine reaching the point of acceptance and empowerment they have found, if I found out that I was HIV infected.
All on their own they have come up with additional projects to do. Stephen, one of the peers at George clinic came up with the idea to do an outbreak mapping of sorts. He mapped all the smear positive cases of TB in the community and determined where the clusters of active disease are. Then he organized teams of treatment supporters to go out to these neighborhood clusters to encourage further case finding and enrollment in TB care. This is certainly not in his job description. They also took it upon themselves to schedule the first meeting of a TB-HIV support group which we had vaguely discussed with them but about which we had never finalized plans. The first I heard about it was last week, when they told me it would be happening this week. They have been truly wonderful.
Despite all that, they have also lived up to the stereotypes of locals pushing to get as much as they can, from the NGO, from the mzungu, and I almost want to hate them for it, for the way they manipulate me and the way they make me feel almost guilty for who I am, where I come from, and what I am privileged to have.
To fully understand what’s going on here, you have to know a bit more about the history of NGOs in Africa, because I know at least a bit about that now. Over the years, new programs, new initiatives and new work to be done led the NGOs to create initiatives for people to do them. They range from larger initiatives, like overtime pay for nurses, to smaller things, like transport reimbursements for attending a meeting or training, and refreshments. Sure, throughout the world, everybody appreciates refreshments at any event. In school, it’s a lunchtime mantra, a guide to choosing which meetings to attend during lunch time, “Free food!”
But for people here, its importance has become to excess. It has come to the point that people will complain if there is none, or not enough, or even if it’s not what they wanted. After a perfectly satisfying, free lunch one day during the peer training back in September, where we had given them “chicken & chips,” they said to me, “Sarah, why did you give us chicken and chips? We wanted nshima instead of chips. Next time give us nshima!”
Here’s a lesson I’ve learned about tea breaks during meetings. If you put out a plate of biscuits, theoretically enough for everyone in the room, they will most likely be gone before everybody gets some. That’s because people will pile biscuits onto their plates like these are the last ones they’ll ever have. They’ll be more biscuits on their plate than you can imagine them comfortably eating in one sitting. And if, by some huge chance, there are any leftovers on the tray at the end of tea break, they will soon disappear into purses and bags. I know we’re not really that different at home, we still crowd and hustle for food, and take leftovers away, but maybe not quite to this extent, or perhaps with this much disregard for those around us. And if the food is gone, it’s gone. We don’t usually complain that there should have been more or that we didn’t approve of what was ordered, or that we’ll never come back because there wasn’t any food. So, if you don’t want your tea break biscuits to disappear before equitable consumption, what you need to do is this: prepare pre-wrapped, napkin covered packets of little piles of biscuits and hand them out, that way, everyone gets one.
Getting back to those incentives. I think I’ve written in the past how going to trainings is a big deal here. That’s partially because they do in fact teach people skills they do not have. For example, nurses who have never been trained to care for HIV patients get a fully paid for opportunity to learn how to do so. But it’s tricky. Because while we’re not paying them to attend per se, we give them money as lunch reimbursements, as travel reimbursements, which is often more than they would really spend on those things. Sometimes, they’ll go without lunch, just to be able to keep more of the money. It’s seen as an added income source. I’ve heard of people managing to get themselves into trainings in various topics, on a weekly basis, as a source of income, not because they really want to learn whatever the training is about.
The NGOs have shot themselves in the foot. We create these programs and incentives to do them, then we talk of sustainability and enabling local organizations and government offices to take over, and because of that, the incentives cannot continue. And when the incentives stop, so do the people who were willing to do these things before. Nurses paid overtime to help fulfill our TB/HIV integration of care initiatives have helped those practices become Ministry of Health standard of care, but the nurses still don’t consider it to be so. You take away the overtime pay and they won’t feel any obligation to do those jobs.
Alright, so what does all that have to do with the peers? When the peers informed me of support group meeting they planned, it was almost their demand that there be refreshments provided. I got a mouthful from both the peers and the TB corner nurse about this issue and I felt thrown to the lions.
“The first meeting is very important you know Sarah, people will not come again if there is no food. They come in the morning for their treatment, and they have to wait all afternoon until 2 pm for the meeting, what will they eat?!” This led to a discussion of the peers themselves, and what they would eat on any given day for lunch, whether they would bring it with them or buy something near the clinic. Apparently the peers do not eat lunch. And this is where they really pulled my heartstrings, this is where they left me almost crying but feeling so manipulated it hurt.
“I do not eat lunch Sarah. How can I? I have four children to feed. I only make XX kwacha per month. How can somebody live on that?! There is the rent to pay, and the school fees. I do not eat until dinner! My second child is 7 years old and HIV positive. She doesn’t understand it. How can I explain it to her? And if I tell her she got it from me, she will hate me. And my oldest child started feeling sick, and I brought him for VCT (voluntary counseling and testing) and he is also HIV positive. And why haven’t we been paid yet? And why are they taking so many taxes out of our pay. Tell me Sarah, how are we supposed to live?”
Yes it’s true, poverty is rampant, they are not paid enough to really live on, they are not always paid on time and they probably do need more food than they have. Those are all things beyond my control. If I could fix them all I would do it in a heartbeat. Yes I feel for them and the more time I spend here, the more I am so grateful for all I have been blessed with in my life. But they played it all up because I came alone to see them, because I’m mzungu and must therefore be rich and therefore they are entitled to what I have. They would never have made such a stink if my Zambian colleague Lillian had been there.
They made me feel guilty about drinking from my water bottle. And when it ran dry, and I was parched, they were very forthcoming about the fact that there were drinks for sale in the TB clinic. But that was likely because I couldn’t sit there, after having heard them talk about how they hadn’t eaten all day, and buy a drink and drink it in front of them, without offering to buy them one too. And so, I bought three drinks. They were each less than a dollar, totally meaningless in the grand scheme of my spending. On the one hand I was happy to do it, something little I could give them that day. But on the other hand, the more I think about it, I feel so conned and manipulated into having done it that’s it just the principle of it that makes me so mad.
There are around 40 people expected at the meeting. 40 people! At the first meeting! How fabulous and exciting is that, that there seems to be such interest and such a need for it. Just the thought of it makes me so excited about this project and its potential. And all of those people said they would come without being promised refreshments.
The fact of the matter is, none of the regular HIV support groups have refreshments. People come because of what it means to them. And I truly believe that if the TB-HIV support group means anything to these patients, they will come regardless of a napkin wrapped pile of biscuits. But I’m starting to lose faith that this rampant cycle of expectations and handouts can ever be broken. And we have a damn long way to go before we even begin to understand sustainability.
After work, I will go home to my walled in McMansion, with my swimming pool, my Western style kitchen, my satellite TV and a fridge full of food. And I’ll think about necessities and excesses. But I will not be made to feel guilty for who I am. I am here in Zambia, living so far away from everything and everyone I know, to do my part, but it’s such a tiny piece, I wonder if any one person could ever feel that impact. Or ever appreciate it.
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