As part of my project on leprosy in the DRC I arranged with Dr Jacques (my amusing, capable, half-Congolese-but-fully-Congolese host) to go to Libenge, a town on the Ubangi river that separates the DRC from Central African Republic and the Republic of Congo. Originally when the capital of the Belgian Congo (now DRC) was being debated it was between Libenge and Kinshasa. I think Libenge is the closest to Belgium in terms of flights, and as such I believe is home to DRC’s first airport.
Anyway, leprosy is endemic in the area and I was looking forward to meeting a variety of different patients on the way there as well as in the surrounding areas. My trips either way were, despite the long, bumpy, 6 hours of red, drunken, dirt road pretty fruitful in terms of the stories I heard and the patients I saw. However the full day I had in and around Libenge was unsuccessful photographically, so I haven’t got the array of shots I was hoping for in this post. I’ll explain.
The thing I was most excited about was meeting pygmies. My previous pygmy knowledge went something like this:
They are shorter than most humans. They live in the bush.
I couldn’t remember anything more from the episode I’d seen two years ago where that guy went around different remote tribes in the world trying to fit in and ended up losing loads of weight having taken their local medication/brews and being very sick in the process.
I was right about one of those things. They are shorter than most human beings, averaging less than 5 feet.
I knew that there were four people in the community I was visiting that had previously had leprosy:
- Bishop, a nervous young boy around 13 or 14.
- Gobi, a single mother in her late thirties.
- Mado, an elderly, but as it turned out fiery woman.
- And Monyabo, an elderly man with a kindly smile and a quiet understanding it seemed.
At first I just sat down with Bishop. He was terrified of me and said nothing. I sat next to him, slightly dwarfing him, on the low straw bed in the hut that barely counted as an abandoned shack. A few sticks, and bits of straw with gaps occasionally filled with mud daub I can’t imagine it provided much shelter during the frequent storms – indeed the similarly built and sized Catholic church had fallen down in the last storm. Jacques translated what his marginally taller, thin and seemingly pregnant mother told us about this being his first encounter with a white man. So I moved to the floor and did my best to smile in a non-threatening way from behind my increasingly bushy beard, even scratching a puppy which staggered out from under the bed, which Bishop picked up. I could visualise a few friends back home squealing in adoration at the sight two feet in front of me. But this is DRC and naturally, it will either die within a few weeks, or be eaten if it doesn’t become painfully thin. Dog meat is still meat.
So I interviewed him/his mother, every now and then shooing away the nosy children that had nothing better to do (literally) than to gather at the door and stare at the white man. Bishop’s leprosy was diagnosed quickly as a result of the awareness work that ALM have been doing in the area (another pleasing display of the competence of Jacques and his team across this vast northern-equatorial province). He was put in the MDT and now appears to have made a full recovery. He of course still suffers stigma from it – neighbours make fun of him and the family are ridiculed for being ‘affected by leprosy’. Their community is not large… and this is not easy to live with for a very young teenager.
As a continuation of the commitment to help those currently and previously afflicted with leprosy, ALM has paid for his school fees. However we quickly learnt he had dropped out of school because he didn’t like it. I found this surprising – most children I meet on this continent rave about going to school – they know learning is their doorway to a better life. I’ve found this basic wisdom pretty common across most of my travels in Africa. Jacques suggested to him that it was worth returning to school, and one day he may have a chance to get a better house and more food for his family. He agreed silently – presumably terrified of giving a different answer. I didn’t believe we were getting very far.
I moved on to interview Gobi.
Gobi is probably one of the poorest people I’ve ever met. She got leprosy at a young age and it has affected her hands so she can no longer grip a machete properly (pretty essential for farming here), and she has lost most of her toes. Her stigma means she’s never been married, but she has a daughter, Bea, a bit younger than Bishop. Apparently her family, realising no one would ever take her brought a man to sleep with her to get her pregnant.
She has had no education, very few people to look after her and only her close family will speak with her. She lives with her daughter in a minute shack, again mainly just sticks lightly tied together with grass and looking like it would barely stand up if someone leaned on it (which someone did, dislodging a stick). She owns two pots for cooking and a large rag as her clothes. The clothes she was wearing were borrowed from her sister; she hurriedly pulled them on when we arrived. “I still thank God though”, she explains. “I am suffering but I am still alive. I just ask that he may provide daily food”.
Mado and Monyabo, the other previously leprosy-affected patients are sitting next to her and start to chip in. A comment from Gobi that her daughter also doesn’t want to attend school a moment later and Jacques’ disturbed reaction provokes enthusiastic explanation of their situation, and the problems of Pygmies.
During colonisation, a white Belgian colonialist persuaded this Pygmy community to move away from their hunter-gatherer lifestyle deep in the bush (still maintained today by some tribes) and move near to Libenge where a town was growing. It seems like he meant the best for them.
They moved, but their community was located quite far out of the town still and they suffered ridicule from the locals – they were recognised and set aside as different, inferior. Kept poorly educated, underpaid when allowed to work and basically kept as slaves. Nothing has changed in that respect until this day it seems. Their regard as inferior humans is reminiscent of racism across the world, the Hutus and Tutsis coming to my mind first, and their treatment is not unlike that of the way migrants in many western countries are treated, taken advantage of, underpaid and not given the time of day for respect or understanding.
None of the children in the community attend school because they are bullied for being pygmies and poor (life is relative after all). Mado was particularly passionate about this: “Stones are thrown at our children and they are spat at. They have poor clothes and shoes and are laughed at because of it.” It is no wonder this community is so poor, its being shunned by society has sent it into cycle of poverty with no-one offering a chance of an opening.
We were beginning to attract interest from other members of the village that had heard of our presence and come back from their work in the fields…
Mado had started to get irate when Jacques said we have not come to give them money. I calmly explained with Jacques’ help that we are here only to collect stories for ALM. They show these stories and photos to Americans so that they may donate money so ALM can continue to help people like them. We could not promise them anything on this trip bar that the community health officer that has helped them before will continue to give his best efforts.
I’m always careful not to give false hope – more often than not, once I’ve explained these reasons via a translator people readily agree to be part of this process. At first it seemed like that in this case, and they agreed to have a photo outside Gobi’s shack. Afterwards I was hoping to spend a few hours photographing their lives generally. (Ideally I’d want a couple of return trips, but when you’re photographing projects across 400km connected only by roads kneaded by rain there’s not much time for those kinds of luxuries).
Jacques had said we’d give Gobi, Mado, Monyabo and Bishop’s mother a sack of salt to share, and I think it was around then that the arguments with other villagers started. Why are you giving it to them and not us? What have you brought us? Why is it you white men come but never give anything back?
It seems that in recent times they’ve had white doctors visit, get stories and take photos, with the promise that they’ll build a hospital or bring money the next day. Whether this is entirely accurate or not I don’t know, but I’ve no doubt there is truth there, and unfortunately in this case, not a good outcome. I hesitate to add that ALM has not been among these people – I’m the first white person from ALM to visit this community.
I wanted to explain to the chief who had shouted at Jacques and the community health officer; he’d demanded salt for himself. I couldn’t understand the Lingala they were speaking and was slightly surprised when Jacques suggested we get moving, a noted urgency in his tone. I said (in my naïve white liberal way of thinking any situation can be solved by talking) that I should really go after the chief and explain what I had to the three leprosy-affected. But Jacques was quite insistent and I submitted. Most of the villagers were now shouting at us as we piled back into the Toyota landcruiser. It hadn’t got violent but Jacques and the health officer assured me it was looking to turn that way if we didn’t head right away.
I sat in the back of the landcruiser as it went out of the village, disappointed and upset. It didn’t help that we still had the salt we had promised our patients. I was angry with the chief for denying Gobi and the others a small something to make their life easier even for a short while. But I’d missed a trick, born, as with many of these misunderstandings, out of ignorance.
Pygmies have, in their society a strong culture of sharing. You give something to one of them, then you give it to all of them. ALM cannot use their resources to please the whole village – they deal with those who have the additional burden of leprosy, helping them in different ways to have the same chances as those that haven’t suffered this disease. Giving to a whole village, however great the need is denying the leprosy afflicted elsewhere. Us giving salt in front of so many people to just four people is an insult. It was Mado that threw it in the back of our vehicle as we left.
“It goes further than that” Jacques explained. “When we gave them the treatment I did it in private in their homes. I gave the MDT pills to the patient, and then multivitamins or whatever harmless pills I could find to the rest of the family. Previously the whole family has shared out the Multi-Drug Therapy, despite it being useless to the others.” Even though this culture of sharing, in my opinion has an enormous amount of benefits and I think is something generally missing from every day Western lifestyles, cultures and even policies, it appears to have gone beyond common sense in this place. Perhaps through lack of education, I don’t know.
But it was truly upsetting seeing that not only is this a stigmatized community, but those with leprosy are then stigmatized within it, and the cultural practices of Pygmies have prevented us from helping them, at least on this occasion. I couldn’t get the photos I’d planned, and as someone who’s contribution ‘to the cause’ as it were is to get photographic evidence of the need/the good work/the stories/whatever, I felt pretty useless.
We visited a health centre next for Jacques to confirm a few leprosy cases. I still had a very sour taste in my mouth – not helped when Jacques noticed they had been reusing needles there. Needless to say he scolded the health officer in charge explaining it is better not to use them at all than to reuse them in an area where HIV prevalence is so high. I won’t go into the sexual practices and forced prostitution of this region in this post…
One of the cases was a pygmy boy and his father. His father was already a confirmed case, but the boy was confirmed then and these by Dr Jacques, with evidence on his legs already showing cuts and infections he could not feel. He was put straight on the MDT and ALM gave them some shoes for protection. As they went away a few young men in the (now expected) small gathering jeered and shouted at them, laughing. It was the all too familiar bullying you see as standard in schools. “They are asking why we gave pygmies shoes when they are not true human beings” Jacques said gravely.
It makes my blood boil. The rest of the day was thoroughly unsuccessful and the team seemed quite tired from the day’s events. I had no impetus to do any more work that day. I asked Jacques if any NGO or missionaries were doing anything to break down this stigma. No-one at all.
Life for me, has since become less frustrating, but this problem with Pygmies remains, and no one is doing anything about it.