Weija – Accra

Africa, Documentary, Leprosy

Weija is on the outskirts of Accra in Ghana. It is a current leprosarium – a designated area for those who are physically affected by leprosy originally because they were shunned from society.

In the present day, most of the families and individuals living in Weija have good relations with families, but here a local charity helps them with food and supplies, making it an attractive destination for those who struggle to earn a daily wage.

A food handout in Weija leprosarium.

There have been movements in the past towards income generation projects here… soap-making etc. But they’ve failed and residence have ended up bickering, usually because of lack of understanding about gross and net profit. The idea of ‘give a man a fish and you feed him for a day, teach him how to fish and you feed him for the rest of his life’ has not been welcomed. Here the ‘give a man a fish and every day after that…’ is preferable.

But then the majority are way past retirement age, disabled with leprosy and have a lifetime of physical and social discomfort behind them. Who can blame them?

Women affected by leprosy in Weija look to buy some jewellery with their monthly allowance.

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Two more years of leprosy please…

Africa, Documentary, Leprosy

I’m now back in West Africa and the moment I stepped off the plane and I felt that hot humidity set around my skin, I relaxed and felt at home. I’d had a strange feeling of apprehension as I set off on the plane (I don’t think the numbing, icy AC helped either); I wasn’t getting that tingling of excitement I usually got when heading back to my favourite part of the world. Now I’m here however, there is an overwhelming feeling of satisfaction of just being, well, IN Africa. The noises, the temperature, the faces, the shouting in the street, the colourful clothes, the goats standing on top of buses, naked toddlers crying by the road, a family of five on a motorbike, the urinal cakes in the sink (ok that’s a new one), the, well…. the Africanness. I think I’ll just call it that.

So that Africanness has wiped away my apprehension, and is letting me focus on what I’m here to do, the probable source of my apprehension in the first place.

Family in a leprosy community. Kwara state, Nigeria 2009

Since 2009 I’ve been (on and off) photographing leprosy. It’s all part of a project called Leprosy Eliminated?, which is intended to record the story and stories of leprosy in the world today. As well as being interesting, it will hopefully raise awareness and bring about understanding as to the nature of this disease.

Woman who’s just been told she has leprosy. Kwara state, Nigeria 2009

One mans determination to be included in his muslim community is evident outside of the Mosque. He leaves his prosthetic on the doorstep. Koloware, Togo 2010

American Leprosy Missions have kindly offered to help me complete this project over the next two years. Apart from a short stint in the USA where I gathered a bit more information and visited the ALM headquarters, this is the start of those two years.

I suppose the apprehension stemmed from this daunting task ahead of me. After all, people from around the world are letting me into their lives. I never make any promises, but nevertheless by just being there, I have, and feel, a responsibility towards those I’m photographing and the actions I’m taking. But like I say, simply having this Africanness around me has eased me. Though the task ahead is still of paramount importance, I’m welcoming the challenge from my comfort zone.

So I’ve arrived in Ghana. And I bloody love it. Until the end of July I’m going to be searching out and photographing leprosy in Ghana, Cote d’Ivoire and Liberia. At some point the stories from all the countries I visit will go up on a brand new website. Meanwhile, you’ll have to stay tuned to this blog to follow me on this adventure…

Africa’s bullseye: life and leprosy in the DR Congo

Africa, Documentary, General comment, Landscape

This is the Congo.

As I sit down to write this in Dr Jacques Kongawi’s beautiful little guest house (though larger than his own modestly-sized quarters), the rains begin to beat down heavily outside. The corrugated iron roof acts as an amplifier; a huge African drum under a million drops of rain. The volume of noise is incredible. This is the sound of the Republique Democratique du Congo, famed for its mighty river (above), just a few months into the long rainy season.

I am in Gemena, a town in the Sud-Bangui province. On a map of the continent this is the bullseye. The DRC (as English abbreviates it to) is the country that probably has the greatest wealth in terms of natural resources in the world. But instead of becoming a rich, healthy nation it has been plagued by greedy Kings, colonialists ruling with an iron fist, absurd and almost laughably selfish dictators, bloody and complex wars, disease, and everything else that stands in contrast to the great potential it has to becoming a prosperous place to live. Rape is redefined in the Eastern parts of this country and it has been declared to be the worst place in the world to be a woman – in an age obsessed with Al-Quaeda and the Taliban regime that is quite a statement.

But for the month of June I have been documenting a problem that has been around long before the Portuguese explorers first ventured into the mouth of the great river natives called Kongo.

I am working with American Leprosy Missions, one of a number of organisations dedicated to dealing with the problem of leprosy worldwide. I spent 4 days south of the capital Kinshasa with their Buruli Ulcer projects – a nasty ulcerous bacteria similar to leprosy but much more painful to its victims – before moving up here one week ago, to the largest concentration of leprosy in the country. I arrived with Bill, president of the American Leprosy Mission, Matt also with ALM and Nikki with The Leprosy Mission Canada. Most of the photographs in this post are from many short visits to patients we did in the first week so the team could collect stories on video and assess how best to direct their funds. Bill is new to ALM, so it was also good for him to see their projects first hand.

Above: the sign on the door of the leprosy office in Karawa hospital a few hours bumpy drive from Gemena.

Photographing leprosy across the world has become somewhat of a personal project of mine, and I’m hoping to document it in other countries next year. It’s a disease that everyone has heard of – everyone knows about Jesus healing the ‘lepers’ whether you are Christian or not – but generally across the world, even in the countries where it’s still present there is very little basic understanding, and sometimes even awareness that it’s still a problem. I’ll give you a very brief rundown…

Leprosy is curable. The culprit is Mycobacterium leprae, a bacteria closely related to tuberculosis. It is thought to be transmitted in water droplets – perhaps through sneezing for example, but it is not that easy to contract. It is clear that you have to spend a long time with people affected by leprosy to stand a chance of getting it. You also need a very poor immune system. Despite spending long periods of time among these people I will almost certainly never get it. When it does manage to survive in a human it takes around 7-10 years before the first signs of leprosy emerge. These are usually skin patches that begin to show signs of anaesthesia. The destruction of areas of the peripheral nervous system is the best know symptom – it means that any cuts obtained in these numb patches don’t get noticed. They therefore aren’t cared for, they don’t heal well and infections develop; flesh rots away or requires amputation or excision. It is this that can lead to the characteristic missing digits or limbs that are associated with leprosy.

But start taking the antibiotics that is provided for free worldwide and within a day 99% of the bacteria is eliminated from your system and you are no longer contagious. To totally rid of it, continuation of the Multi-Drug Therapy (MDT) for a year is usually necessary. However any numbness attained or digits lost will not change and for the rest of one’s life great care must be taken to make sure any cuts suffered do not get infected.

There are many different problems and reasons why leprosy is still present worldwide, despite it being ‘officially eliminated’ from all but three countries (Nepal, Brazil and Timor-Leste if you’ve ever heard of it). I won’t go into those reasons here… I could cheekily refer you to my own website where I have explanations along with photo essays that go further into these problems, or alternatively please click on the brand-spanking new website of the American Leprosy Missions.

But right now I’m in the Congo and in my brief week I’ve had the chance to visit a number of the different people that have at one point suffered this disease. Some of the stories are extraordinary.

Mitano, an elderly man with leprosy sits in the house that ALM built for him. He now keeps a couple of chickens and a rabbit. However every now and then people will steal from him, so Dr Jacques, the Regional representative for ALM, decided to buy him a dog to scare people off. He named the dog Dr Jacques. He has suffered a lot of stigma, and has never been invited to any of the local community gatherings or occasional celebrations. So recently he decided to spend all of his money on hosting his own party to see if people would turn up. He bought meat and fish and was amazed that residents came along to eat the food he’d prepared with his own filed-down hands. He broke into a grin “When I am at last taken away from this life, they will put on my grave ‘he hosted the best party this village has seen!'”.

Above: Gemena, down from the main market. I can’t personally verify Gemena is no different from any other Congolese Town, but I would imagine it works in the same way. When we arrived, Jacques turned to us all and pointed out a few places. “This is the post office” he stated clearly in English, but with a slightly nasal Congolese accent, “it does not work”.

Dr Jacques himself has many interesting stories. He is one of many half-black half-white Congolese whose mothers were the ‘local relief’ Belgians indulged in during colonialsation. He managed to become very well educated without his father who had visited his mother a number of times over the years. When he was in Brussels studying Tropical Medicine on a scholarship he found out his father was not dead like his mother had been informed by a Belgian nun. He found out the address, and when a woman answered the door, left with her a written message explaining he was the son of so-and-so. When he returned he was told to leave immediately before the police were called. He never met his father, and never wanted anything from him other than to see his roots. He has friends with similar stories. He remembers one childhood friend who was taken from his mother to be adopted by a Belgian doctor and his wife who couldn’t have children of their own. The mother was told her son, who was at the doctors for a few days had died in the night. She of course could not even see the body. This was all found out many years later.

Above: family in Africa is very important… this elderly woman with leprosy (centre) claimed to have over one hundred grandchildren. We somewhat doubted, but considering you can be Catholic and still have several wives here it is unsurprising that people often have ten children. There is one man in Gemena who has apparently fathered 48 children.

This is Nzalawa Albertine. She is probably in her fifties, but isn’t sure. Her first husband died in the nineties. She has given birth to 17 children in her life. Four of them are still alive. She blames her second husband for the death of the other 13. “My second husband and his family used witchcraft to kill them. I do not know how, but I know it was witchcraft”. They died for various differing but not unusual reasons… mainly from falling sick. Strangely though, she said her husband admitted to killing the children (mostly from her first marriage) through witchcraft. This is a part of the culture that is initially hard to accept as a travelling westerner, but one I’ve know seen in other countries like Togo, Benin, Nigeria and Sierra Leone.

She states their deaths quite matter-of-factly, numbed perhaps from each loss. The numb patches from leprosy on her feet and body add to an already unbearable burden. She got leprosy shortly after she fled her second husband, unable to have any real say in the divorce she wanted. After all, this is Africa, and she is only a woman.

She lives with one of her remaining daughters. She used to shelter in a ramshackle hut until ALM built her a more solid one. She spends all day farming cassava leaves and occasionally manages to sell a few trade goods that ALM loans her… dried cassava, coffee etc. “I eat cassava leaves every day. I have no money for oil or salt, so it doesn’t taste of much.” Dr Jacques furrowed his brow in concern and asked a question he very well knew the answer to. “Do you ever have a chance to eat meat?“. Nzalawa laughed weakly. “Who will buy me meat? Without my daughter here I wouldn’t be able to do anything.”

I sit back and watch as Nzalawa carefully makes and filters freshly made coffee from the local beans. They give her the impetus she needs to get back to working in the field in the afternoon. Smoke fills the small but sturdy hut. She says her daughter is only 17, but she could be mistaken for being in her thirties. She was asked by a family in another village to be a man’s wife, but her mother said she couldn’t go because she depended on her so much.

I was amazed at how good some of the roads around here are (occasionally). Considering the infrastructure in this country is barely in existence I’ve been very impressed by the (occasional) smoothness of some of the roads. It doesn’t stop other areas resembling a particularly choppy sea though. “You know how to tell if a driver is drunk here in the Congo” says Jacques, his eyes smiling behind his tinted glasses. “They are driving in a straight line on the road”. Not that it would make a difference with the reliability of the police in this country. A man driving along the road who has spent all his money on palm wine has nothing to hand over…

The size of the trees and lushness of the vegetation in general around here is incredible. The agricultural potential, even on a small sustainable level, is enormous. Yet I see large factories still capable of producing vast quantities of coffee or maize, lying unused. No-one knows how to use them. They were taken away from foreign hands during Mobutu’s long regime, but there was no hand over and production ceased soon after the ex-pats left.

Above: In reading a bit about the history of the Congo I’d heard about this distinctive hairstyle typical of more central African countries. You see this style of braiding everywhere.

On Friday I visited Bulu hospital a couple of hours away, mainly just to see the state it was in. There were two leprosy patients currently under its care, but all the beds were full, and there were more urgent cases that took priority.

One of the patients visited while we were there so that Jacques could speak to them.

It was just such a poor rural hospital. The sterilised sheets in the operating theatre were tattered from use and stained so thoroughly it gives you goosebumps to think of the operations that caused them. Outside the maternity ward I found a young pregnant mother resting in a chair, her toddler waiting for her to muster the energy needed to pay attention.

Before going out one day a man came to Dr Jacques house, where I am staying and also where the ALM offices are. On average there are usually five visitors per day asking to see the doctor. They all have a patch on their skin and are afraid it is leprosy. We were on the cusp of leaving so Dr Jacques examined him on his drive, his well-kept property our of prying eyes so there was enough privacy still.

Naiya Yembe, 37 showed Dr Jacques the skin patch on his back and and also demonstrated the swollen nerves on his knee. Though he still had feeling on his patches the evidence pointed to early signs of leprosy.

Then the regional nurse walked in and he recognised Naiya as a leprosy patient that had been put on the MDT medication 7 years ago. He had taken the medication, but only for three months. Why? We told you to take the full course, what made you stop?

“I was running from the rebels. They came and we had to leave quickly so the medication got left behind”.

Naiya, his wife and his four children lived in the bush for two months waiting until they could safely return home. During that time his two youngest children got malaria and died. The skin patches had subsided and until recently the leprosy was forgotten about. He will start up the treatment once again after a laboratory test confirms it is leprosy.

An brief outing at sunset showed us a few of the areas around Jacques house. A beautiful lake provides the ideal dusk wash down for locals, their antics once overlooked by ex-pats enjoying a beer at a well-known Belgian restaurant. Abandoned during the Mobutu years, it still has in its grounds the majestic statue of Nzomba, a heroic local warrior, now only admired by boys who enjoy the view from the top. Even if the restaurant could get up and running, there are few around that could afford even reasonable prices.

More sinister territory lies near by Jacques house. This is the home (or one of them) of Jean-Pierre Bemba, one of the Democratic Republic of Congo’s more bloodthirsty politicians/warlords. He owns an enormous plantation next to Jacques house, just one small source of a wealth thought to be in the hundreds of millions of dollars. If he wasn’t currently awaiting trial at the International Criminal Court in the Hague for crimes against humanity and war crimes, we may have given quadbiking through his plantation a second thought.

We were eyed somewhat suspiciously by a semi-alert guard when we viewed his father’s mausoleum however. The concrete hexagon closer resembling an unfinished miniature silo than a grand tribute to is father, and surrounded by rust-red termite hills, it was a rather strange resting place for Jeannot Bemba Saolona, the wealthy Zairean businessman who profited hugely during the Mobutu era.

Clearly without Bemba’s presence, locals aren’t averse to messing around in the irrigation pools.

One of the ways ALM has been exploring in helping make the leprosy affected live sustainable lives is loaning goods for people to sell at a profit. These are usually along the lines of palm oil, salt, sugar, coffee and soap.

This is often done quite successfully. During the first week I saw two people repay recent loans from ALM.

However it doesn’t always work that way… one of the many challenges Dr Jacques must cope with.The pastor preaching to the crowd (above) had leprosy. ALM loaned him money to start a small trade, and enough to send his son to school. However, as I’ve noticed is increasingly (perhaps?) common across Africa, the money was spent on local brews. He is an alcoholic, and Jacques has had no choice to cut off money until he can see the man is attempting to make changes for himself. He says he needs money to send his son to school, but Jacques knows that there’s only one place that money will go if he is loaned it. The boy is, quite bluntly, collateral damage.

Expecting an alcoholic, much less one who still suffers after affects from leprosy, and who, as a given lives below the international poverty line to suddenly become sober, even for the sake of his son’s education would take nothing less than a miracle.

Above: strips of leaves used for roofing are laid out to dry in the sun.

Below: A man takes plantain and cassava leaves on the back of his bicycle to sell at a market 10km away.

Witch doctors, the local herbalists and traditional medicine practitioners have often posed problems, as locals usually approach them first if not out of preference, out of proximity. However some have been asked to refer patients that look like likely leprosy cases to Dr Jacques. It’s an approach that respects and works with the local culture, not against it.

I generally don’t hand out any money when I work. For a start I’m usually photographing people who are being encouraged by an organisation to find sustainable solutions for living. You don’t want people to rely on the next white man to provide their food. Also if I gave out money to everyone I felt really needed it, I wouldn’t be able to fund half of these projects (the self-funded half naturally). I’m hoping I can be more useful in an indirect, long-term role.

However this next lady really moved me into giving the pathetic 3800 Congolese francs (around four US dollars) I had in my pocket.

It’s not that Tapita Pugbale has a particularly sad story. Granted, her husband died in the late nineties, but that is hardly unusual, and in this culture it seems, barely worth mentioning. She lives in one of the huts built from a collaboration between ALM and Habitat for Humanity.

And ALM loans her the aforementioned soap, coffee etc to sell to make a living. She is not particularly good at it – she is unable to walk to market, so sells it from in front of her hut, hardly the busiest place in Gemena.

She’s wearing a clean white top that Jacques gave her as a present (she is genuinely pleased and excited to see him when we arrive), and wandering into her hut sunlit through thin orange sheets, she has the expected curiosities on the wall… I wonder how often her tie collection gets put to use? Or perhaps it’s a part of her husband she won’t let go of.

She is unable to pound cassava or do much of the house-labour women here are brought up to do the moment they can be pulled out of school (on the occasion they ever went to school). She still has reactions to the bacteria inside her, even though it is now dead and she is no longer considered (at least by definition courtesy of the World Health Organisation) a leprosy-sufferer. In fact I’ve seen many many cases like hers. From a Leprosy Mission’s standpoint she is an average elderly woman who still carries a few marks of leprosy. Better than average perhaps, as she has suffered no stigma throughout her time, and her church group has come to pray with her when she has been unable to walk to the Sunday service.

But she still struggles to make a living. She has rarely been able to repay the loan from ALM that Dr Jacques has provided. But he says she doesn’t spend it wildly… aside from once spending it on a grandsons funeral she spends it on food for herself. She has no family around to look after her, and when I visited she was lying on her bed, weak, having only eaten a small bowl of cassava leaves that morning. She was hungry, and clearly life’s lot has made her weary and very emotional. She started crying mid-sentence and said, “I’m hungry, but what reason do I have to live? I just wish my husband could come back and take me to heaven with him.”

There’s not much you can say to that. I looked at Jacques and said I’d like to give her these francs. He nodded, his face still and solemn, despite being used to hearing these things everyday since he started his job. “Yes, that would be good”.

When I left Tapita’s, Jacques turned to me and said “you know, without ALM Tapita really would be dead. We provide the medication she needs from the reactions to the dead bacteria. If she wasn’t so close to where I live she would have died a long time ago”.

I read an article recently called “Hiding the Real Africa“; about NGO’s faking facts and figures to make the need seem greater than it really is in order to get donations flowing in and to sustain their organisation/business. But I haven’t sensationalised anything in this post. The DRC has a long way to go to bringing it’s people towards the standard of living reflective of it’s natural wealth. Probably far beyond my life time. I hope not. But at the moment it’s the efforts and encouragement from ALM and the likes of Dr Jacques that are what gives thousands of people affected by leprosy a chance. People like Tapita cannot afford to wait for their government to play catch-up with the rest of the world.

Leprosy Eliminated? Togo

Documentary, Photojournalism

MAHAMADOU KEFAS

Mahamadou was 20 when he got leprosy. I spoke to him at Koloware’s Centre de Sante, formally Centre de Lepreserie, a Catholic Mission near Sokode in Togo, West Africa. He was born in neighbouring Benin, and was working on a farm in Anie with his father when he noticed a cut on his arm that he hadn’t felt. He realised that his entire body was going numb. I spoke to him as he sat in his wheelchair outside the wound care room where Tchedre the nurse was doing dressing changes for several patients at 7.30am on a Friday morning. Most of the patients who were due to have their wounds looked at had not turned up due to heavy rains that morning. This is not uncommon, but unchecked wounds do get worse. Stones often turn up in foot wounds and infection sets in very quickly. It is these infections that result in rotting flesh that drops off or requires amputation, leading to loss of digits and limbs.

Mahamadou told his father about the symptoms and was taken to a hospital where a doctor correctly diagnosed it as leprosy. He was due to go into the local clinic near where he lived in southern Togo three times a week for injections. However continuing to work on the farm he suffered more cuts which started to get infected. Word spread that he had leprosy. No-one would hang around with him anymore. If he went out people would shy away from him. He told me that his friends would see him then simply turn around and run away. He lived with his father who stuck by him, but the rest of his relatives did not visit or speak to him. Eventually he stopped going out completely. The only people he spoke to for several years were his father and the doctor. His Uncle heard about Koloware and his father brought him up to the Leprosy Centre. His father visited him every Saturday for 4 years before he died.

He now lives in a small room in a compound with a total of five rooms, each housing a patient. He is the only one of them that does not have family. The leprosy bacterium (Mycobacterium leprae – closely related to tuberculosis) that causes the numbness is no longer active in him. He has no right foot, no digits on his left hand, cannot feel any part of his body, is blind and according to the World Health Organisation does not have leprosy. He has lived in Koloware like this, relying on food and support from the sisters of the Catholic Mission since the 1960’s.

Above and below: Mahamadou eats alone in his room. He is blind and can’t feel what he’s touching, so makes sure his food bowl is always in the same place between his legs so he knows he’s picking up food. He has no fingers on his left hand, mainly from burning his fingers while cooking during early years at Koloware.

Above: Mahamadou gets a check up every few days at the health post about 40 metres from his house. Missed appointments in the past have lead to the types of infections that took his right leg away from him.

Above: Mahamadou is numb over almost his entire body.

TCHEDRE WALLAKASONA AND THE KOLOWARE LEPROSY CENTRE

Tchedre’s Uncle was a nurse at the Leprosy Centre and encouraged him at 17 to come and work here. He soon learned that despite much help being needed for the 300 ‘lepers’ (at the time) at Koloware there were very few doctors who would even go near them for fear of contracting the disease. The sister who was in charge of the mission at the time saw potential in him and with the private funding that the centre gets from European (primarily German these days) individuals sent him to the nearest town, Sokode to get trained as a nurse.

Despite retiring 5 years ago, he still comes in three times a week to check and clean the wounds on many of the patients. He described the attitude of many of his patients as like that of children: “Every day you must bring them in to take their medicine, or get dressing changes. But they can’t feel the pain, and I see them handle red hot pans with their hands. If they have work to be doing at home (such as cooking, or even farming for the few that are able) they choose that over coming in for their check-up. When they do come in I sometimes see stones lodged in their wounds (causing infections) because they haven’t been checked in several days. I even tell them not to go into the field to work after I’ve changed their dressings, yet they do and get dirt all over them”.

He is dealing for the most part with the very poorest people that have received no education. Sometimes it is hard to have sympathy for those that don’t seem to want to help themselves, but in the cases of these men and women their priorities are always going to be food, water and whatever family is still around them above a cut that does not affect them at present and that does not feel painful. Such is their way of life. Tchedre obviously cares enough to carry on having retired.

He told me that in the central region (where Koloware is located) about 50 people get diagnosed with leprosy each year. It’s not exactly a ground breaking figure, but such a feared disease also means that many will be hiding their symptoms – like almost all of those that attend Koloware Health Centre once did. Women especially suffer from this – if the husband doesn’t throw them out outright they’ll almost certainly be hidden away for fear of bringing shame on the family. Leprosy is not a fast acting disease, developing over many years. But with most of the people that get it ignoring the patches and numbness out of ignorance or fear, the later stages are often reached even in these current days when the Multi-Drug Therapy (MDT) cure is readily available worldwide.

They are able to take the drugs at home, only coming in to Sokode (where the central region’s leprosy advisor is) to pick them up and for the occasional check up. But too many times have professional, trained nurses in Sokode hospital refused to touch those with the disease, helping fuel the stigma. Many patients are sent to Koloware for these dressing changes. With the exception of the foreign missionaries (like the director – Sister Antonietta from Italy), all the staff in the health post have been born in Koloware and grown up around those with leprosy. However even in Koloware there’s fear about the disease, despite being educated in how easy it is to cure if caught early.

Just a few weeks before I arrived some farm-hands had seen patches on a sixteen year old co-worker. They suggested it was leprosy, but the boy covered them up with his shirt insisting it was from a voodoo curse that was put on him – the more bearable burden. Fortunately they confronted him later and he agreed to go for a diagnosis at the health post, where they confirmed it was leprosy. Within two weeks he was no longer contagious; however he will need to make sure he continues taking the MDT for at least a year before the bacteria has completely been eliminated. His colleagues had caught the disease before any nerves had been killed, but if they hadn’t the numbness would remain for the rest of his life, and he would have to be extremely careful as a farmer that those areas of anaesthetised skin don’t get damaged.

There are only a couple of the ‘lepers’ that attend the markets – when people from all around the village come to sell, buy and trade in Koloware. They fear being shunned and rejected. Those that have small businesses rarely attend their own stalls, knowing people will not buy from them. They instead get family to sell for them. Others have little choice, hoping the busyness of the market will pull attention away from them they go about buying the food they must have to survive. Since the leprosy post was founded here 63 years ago there has been only one marriage between a ‘leper’ and a ‘non-leper’. Social mixing is relatively uncommon.

Above: Patients wait outside the Health Centre for dressing changes and check-ups.

Above: Assistants from Koloware help patients clean out infected wounds under the tap before they are looked at by the nurse.

Above: When you can’t feel your feet you can’t tell when your feet get too big for your shoes or when they are crushed. Permanent disfigurement can make walking extremely difficult.

Above: Tchedre Wallakasona, who has worked at Koloware since 1967 and despite retiring five years ago still comes in three times a week.

Above: Tchedre examines a regular patient while a child looks through the curtain from the room next door. The Health Centre now attends other diseases and injuries as well as leprosy, it’s main purpose when it was founded over 60 years ago.

Above: A ‘leper’ makes twine to sell to bind straw onto roofs. I saw a few patients doing this job even though few have fingers, and some are entirely blind.

Above: A patient passes the time with a rolled up cigarette.

Above: This man has been blind for over thirty years. He also spends much of his time making twine for roofs.

Above: Leprosy affects the eyes in a number of ways that can result in blindness. In this case it has prevented the eyelids from closing and protecting her eyes from dust and dirt. Tchedre is reaching out to her and berating her for missing her dressing change the previous morning due to the rain.

Above: A ‘leper’ buys vegetables from the Saturday market.

Above: Outside the Mosque at lunchtime on market day, a faithful patient must remove his prosthesis as well as his footwear before entering.

AISSATOU ASSOUMANOU

Aissa was brought up in Sokode, red patches started appearing on her face and she was diagnosed with leprosy. She was 12 at the time. She started the treatment, but stopped going when she was married at 13. Her husband told her it brought shame to the family, so she pretended she had never had it. In the next few years she gave birth to a boy and girl by him, but patches started to appear again in her late teens and her husband left her. “I was sad” she recounted wistfully, “but not because he left me, because the leprosy had come back again”.

Her parents took her to Koloware where treatment began. After four years of living in Koloware and taking the treatment she got married again, to a fellow ‘leper’.

While I was with my second husband, my first one came to visit me. He saw I had built a life around me and was happy. He was jealous and angry. But I wasn’t going to go back to him, even after my second husband died from leprosy.” Her second husband had built a home for her and their two new children, but after his death a storm destroyed it while they were sleeping. She managed to get her children out before the roof collapsed in on them. The director at the time helped rebuild her house with the funds from private donors. Of her four children three are living in Cotonou in Benin, and one in Sokode. She sees them once a year after the Islamic festival of Tabasci.

She is lucky in that her leprosy injuries are easier to hide than others, and she sells a few things on market day; ground nuts, cigarettes etc. “I used to sell much more, biscuits and sweet snacks. However over the years my custom has got worse. If the director didn’t provide me with ingredients to cook with I wouldn’t have enough to feed myself”. Last week the patient living in the room next to her died. She will use the room to house her chickens until somebody comes to fill it up.

Above: Aissa thinks back through her life as my questions brought up past memories.

Above: The courtyard where Aissa lives. Her room is one of those on the block on the right.

Above: Aissa cooks in the light of her doorway, away from the spitting rain outside.

Above: Aissa emerges from the doorway of the room next to hers. It was vacated last week by its owner who died of infections from leprosy. She keeps chickens in it now.

Above: The infection on the bottom of Aissa’s foot. She is glad that it is easily concealable.

Above: Aissa sells groundnuts and other snacks at her stall outside the yard where her room is. She used to sell much more, but business has not been good in recent years.

I only had two days to photograph in this small village. I wish I had been able to spend more time and properly got to know the lives of these social outcasts. I am trying to document leprosy in several different countries worldwide, to show that such an ancient, well-known and easily curable disease has not been eradicated because of the vastly disproportionate wealth distribution across the globe. It can only survive in people with poorest immune systems where poverty is rife, and will continue to destroy the lives of those it inhabits due to the lack of education and stigma that surrounds it. The project is entirely self-funded, and I plan to fund my own exhibition to raise awareness. If you can help in any way, with finance or advice, then please do not hesitate to contact me – info@tom-bradley.com. My leprosy work from Nepal and Nigeria is on my website – www.tom-bradley.com.

Central Togo: The Koloware Health Post

Documentary, Photojournalism, portrait, street photography, travel

The trip up to Sokode went as far as I was concerned pretty smoothly. Dodji and I left the house at 6 in the morning and went straight to the bus station where I bought us tickets up north to Sokode. I’d travelled on plenty of local buses in various part of Africa before, so wasn’t surprised that we had to wait for over an hour for the bus to leave at 7.30am. I also wasn’t surprised that it didn’t in fact leave until 8.30am. In fact I was pretty happy it was only delayed an hour. In Zambia I once had to wait 8 hours for a bus to leave after its scheduled departure. Naturally we were crammed into the bus, 20 in a 14-seater bus. Raymond (having lived in Sokode for three years) had promised the journey would be about three hours. I remember smiling to him as he said this and suggesting that perhaps it would be therefore more like five or six hours. I received a hurt look in return and bit my tongue from explaining the western take on time in Africa.

Regretting my smugness we arrived in Sokode at 4pm. There weren’t even long delays, we stopped every now and then for travellers to answer nature’s call and satisfy their snack cravings as well as allowing a poor young mother on the bench behind me to clean her vomit from her and her baby’s clothes. Malaria apparently.

After directions from a pastor-friend of Raymond’s to Koloware, where the Catholic Mission Leprosy Centre-turned Health Centre is located, we hopped on zimis for the pleasant journey through beautiful lush-green Togolese countryside. The villages were beautiful, with noticeably less rubbish than near the cities and stop-off points on the journey up. The wind blowing in my face was warm but not to humid, the clouds ranging from bright white to thick black, divided with crackled lines, a sky that had Ride of the Valkyries as its soundtrack. Raindrops fell lightly and sporadically bringing the temperature down perfectly.

Koloware Catholic Mission

A cyclist scoots through Koloware village among houses for the 'lepers'

Approaching Koloware

We arrived at a Health Centre that looked luxurious – spacious, clean simple buildings that were not nearly as old as I had expected from a leprosy mission that had no ties with NGO or government funding.

We briefly saw the director, Sister Antonietta, who was extremely busy, but greeted us with a beaming, surprised smile. It was through a friend of Raymond’s who worked in Health that I had heard about Koloware. When I asked for the number to call ahead and ask if we could stay, he said it was not a problem – it was run by Catholic sisters and they had a dormitory. We could turn up, explain my project and stay there with no problem at all. I’m not sure the frightfully busy Sister Antonietta quite appreciated his casual attitude. Explaining that she’d been given no warning, she informed us of the lack of beds they had at Koloware – even all the hospital ones were full. We’d have to put ourselves up in hotel in Sokode. Well I was not able to afford the daily commute to Koloware for the next couple of days let alone accommodation at a hotel – even basic accommodation was not within my budget for the trip.

With nowhere to stay, Dodji and I stood crestfallen at the side of the road – the formerly pleasant light rain now soaking through our clothes and spirits. He explained our situation to two passing elderly gentlemen. They sympathised and led us two minutes walk away into a little hamlet of huts. There we were introduced to Reda, who immediately with the fussiness of a grandmother who had just had the Queen turn up on her doorstep took my extremely heavy camera bag and sped across a courtyard over to a room while excitedly beckoning us to follow. In less than five minutes, with barely a word from Dodji or I she had cleared the room, put in a hefty mattress made with rice bags for myself, a mat for Dodji (he insisted on sleeping on that rather than the mattress), clean sheets and a table for all our things. We thanked her constantly, but she just said ‘non non non non non’ waving it away.

This is Reda's courtyard. Our room is the centre one with the door open. The man on the right is brewing beer.

Mine and Dodji's room.

Reda cooks our Akume and Soup by torchlight. Electricty went down 3 months ago in this area from a lightning strike. It hasn't been fixed since. Only the hospital has it's own generator.

Half an hour later, we were clean (I’m surprised at how I’m now so used to washing with cold water from a bucket) and sitting down in the dark to akume (a mashed pulp of cassava and flour) and kodoro (a northern Togolese soup made with leaves from baobab trees). I really couldn’t have asked for more.

Sister Antonietta in her office. She has lived in Koloware as a missionary for eight years.

A patient waits for dressing changes at 7.30 in the morning.

A 6.40am rise and we went straight to the health centre where Sister Antonietta pointed us in the direction of the leprosy clinic. There were already 15 gathered together, ready and waiting for wound care and dressing changes by the nurse Tchedre Wallakosona. It took a little while to find someone who spoke French well enough to translate into the local language of Kotokoli.

Kufou, the thirteen year old pharmacists son and our translator form French to Kotokoli.

Eventually it was Kufou, the pharmacist’s son who was shyly pushed forward. With two translators, especially when one is 13 and only speaks the French he’s learned from school, it’s not always easy to get the answers to the questions you asked originally. Still, I managed to talk to a couple of patients for a while, gathering their stories.

Dodji speaks to Mahammoud, a blind Beninoise leprosy patient that has lived here for over forty years.

The rain was thick in the morning, getting to torrential-standard for the UK, but simply averagely-heavy rain for here.

Patients crowd under the porch away from the heavy rains at Koloware Health Centre.

Rain in Koloware.

A decent rest at lunch time and a quick charge of my laptop at Tchedre’s house made for a relaxing afternoon before more photography. I got a chance to chat with the spritely, enthusiatic Tchedre, who proved to be extremely helpful and informative about the health centre and the area. He’s worked here since 1967, and despite the fact that he officially stopped working 5 years ago, still works with the leprosy patients in the hospital three days a week. I’ll follow up more on this in my next blog, specifically about the leprosy work being done here.

A leprosy patient sitting in his doorway in Koloware village.

The Togolese people further north in the country are, like many western African countries, predominantly Muslim, and I attended my first ever Islamic event in the evening. The Imam allowed me to go into the Mosque and photograph. Embarrassingly I know very little about the religion, so I was cautious and hovered at the back, photographing in the spacious, well-used room, the light blues and drab browns lit by just a couple of bulbs. It lasted just a few intense minutes, with the Imam praying out loud at the front. Each time they bowed in silent worship I’d take a photo, aware of the echo of my near silent shutter in the holy temple.

Muslim men pray in the Mosque.

Muslim women pray in a separate section at the back of the Mosque.

I nipped round the back to photograph the women’s entrance. They have a separate area at the back where they pray. I’ve always wanted to find out more about Islam, preferably not from reading the Daily Mail, so if anyone has any recommendations for a book about it I’m all ears.

Koloware Mosque.

Dodji and I got back to our room in the dark to find a mouse in my mosquito net and droppings all over my bed. I’m not particularly bothered about such things, but Dodji had a little fit trying to stamp on the mouse which promptly disappeared into the corner of the concrete room without a trace. A half kalabasse bowl was posted outside Reda’s, informing passers-by her homebrew was for sale. I tried a bit with my Akume, it smelt like rotten vegetables, but tasted more like very yeasty liquid bread dowsed in something strong and tesco-value. I declined a second bowl.

The half-kalabasse outside Reda's indicating her home brew is ready for consumption.

Reda and her daughter make her homebrew.

My wash in the square walled drainage area across from the little courtyard was shared with a spider the size of my palm, pulling itself up into the tree above on its slivery thread, glinting in the light of my headtorch, and unwavering in the warm still air. The yellow markings on its back glared at me, just daring me to have a reaction. I’ve barely seen the stars since being in Togo, a result of spending most of my time among city lights, but they are clear up here deeper into the country, peaking through the branches above my head. Venus shone out like a pearl among salt granules, with the dim orange hue of mars not too far. I saw several shooting stars, and not a single satellite. For the first time in three weeks, I wished I could stay here a bit longer. This is the Africa I’d like to live in. We went to bed early, to the laughs of men outside drinking Reda’s homemade beer.

Tchedre shows us the numerous leprosy patients in the village, translating from Kotokoli to French.

A leprosy patient relaxes in the afternoon out of the sun.

Tchedre introduced us to the chief and his two wives. He did have three, but one died recently.

Saturday was market day. The market only started to get under way at about midday so Tchedre showed us around several houses in the morning, asking many of the leprosy patients if I could photograph them. I spent two hours with them, as well as photographing a few around the market. I’d already established from Tchedre that despite Koloware having a large concentration of leprosy since the late forties, and the town also being educated in the fact that none of them can pass on the disease (as none of them are carrying the bacterium) there was still a large stigma attached to having leprosy. Almost all the ‘lepers’ get children or relatives to sell their produce in the market to avoid being seen; it is only a few that venture out to brave shuns and revilement.

Vendors outside the Mosque.

Selling pork at the market.

I had the idea in the afternoon of photographing Mahammoud, one of the patients I had spoken to the previous morning. He agreed to stand without his sunglasses or prosthetic limb wearing just his shorts. I photographed different parts of his body in sections. I’ve exhibited my leprosy work before, and am always looking for new exhibition ideas, and a montage of close ups of this man’s frail, weathered body, numb from leprosy, still healing from wounds well over a decade after he went blind I’m sure will provoke a response from the audience.

Myself and Mahammoud in his room.

He was more than compliant about posing, and I helped him put his prosthetic limb back on afterwards. He’d mentioned the day before that of the five people living in the housing block, he was the only one who had no relatives or friends to visit him. Usually I don’t give money to those I photograph, especially just one person, but since it was beer season, I gave him 200CFA (40 cents) to get a bowl from where everyone else was on this swelteringly hot market day. A big grin broke out on his face, one that you might expect from an old man at the end of his years who’s just been given the opportunity to spend a hot afternoon with a kalabasse of strong yeasty-red beer. Who can blame him? Being blind, disabled, very forgetful, going deaf and with no relatives to visit him, there’s little else left in this world for him.

On my last night there it rained. This time the rain was torrential. It started around midnight and carried on through the morning. For about half an hour it was truly deafening. I was awake anyway when it started, and heard the first few dull thuds like small balls of putty falling from a great height. This developed in a matter of seconds into a barrage of paintballs fired from the heavens targeting Dodji and myself. Within ten minutes it seemed like waves were hitting the house, the Atlantic Ocean emptying itself onto our doorstep. The corrugated iron roof amplifies the sound five-fold and I spoke just to see if Dodji could hear me. I could barely hear me. With the exception of slight cracks around the wooden door and window shutter, the room was sealed, yet I could feel the spray through my mosquito net. I’ve always loved storms, but this one never subsided, and when my alarm went off seven hours later I realised it may be a wet journey to Sokode.

Tchedre with his wife and granddaughter. Tchedre has worked in Koloware since he was 17.

I’d planned to say goodbye to Tchedre, but with the rain like it was I’m sure he’d understand that we’d have got drenched going to his house. Luckily there was a car by the bar down the road that said it had two spaces. It’s not so much hitch-hiking, as anyone can be a taxi, so we agreed about $2 for the both of us to Sokode and hopped in a car that was in poor condition even by African standards. The windscreen resembling a crazy-paved patio is a norm and not something to write home about (he says writing home about it). The front seats looked like they had been attacked by a starved Rottweiler on crack and the back of the rear bench looked half melted. Dodji’s door had to be tied and untied in order to get in and out of it, and mine kept swinging open. Luckily this wasn’t too dangerous as we couldn’t go much faster than 20 mph, partly due to the 100kg of charcoal propping up the back seats, and partly to do with the ancient engine that had a break to smoke every 20 minutes (the driver kept pouring something into the bonnet to put out whatever fires lurked underneath). It had taken us 25 minutes to get to Koloware, but over an hour to get back to Sokode.

The trip home was lengthy (we had to wait 4 hours for the bus to show up this time), but being on a large (prebooked) coach, it was much more comfortable. I got home at 8.30pm to Raymond welcoming me with open arms, like I was the prodigal son. After Koloware, Raymond’s house seems very modern and comfortable. Just goes to show everything in this life is relative.

This year’s adventures in Africa have come to a close now. Raymond, his family and Dodji and the other people who have introduced me to life in Togo have been extremely kind to me and I will make every effort to stay in touch with them in years to come. The last three weeks will stay with me for the rest of my life as very strange but essential time in getting to understand a bit more about how most of the world lives. Yet I don’t consider the wildly poor (compared to back in England) houses I’ve stayed at as places of poverty in terms of the other things I’ve seen here. Perhaps next time I’ll have a go sleeping on the streets.

The barber in Koloware asked if he could shave off my beard. I allowed a quick trim.

Leprosy Eliminated?

Documentary

The following clip is best viewed full screen in HD

You know that you have met people that have truly suffered when their life’s endurance is so clearly reflected in a simple portrait photograph. It is not a question of having the skill to capture a fleeting moment when they betray their horrific memories, but it is permanently engrained on their wind-swept, sun-gnarled, often grossly disfigured faces. Faces devoid of joy, where survival doesn’t seem important.

I travelled to the Terai region of Nepal for 6 weeks in February 2009 to photograph at Lalgadh Leprosy Services Centre (LLSC) on behalf of the Nepal Leprosy Trust. By the end of my six weeks there I decided to start a photographic project about leprosy across the world.

Leprosy is a curable air-borne (in water droplets) bacterial disease that affects the peripheral nervous system and the skin. The loss of sensation can lead to severe disability, including the loss of digits and limbs, blindness and drop-foot.  Equally as devastating for those affected is the stigma that surrounds the disease. Discovery that a person has leprosy can lead to complete social exclusion.

Leprosy is not a new disease; it is an ancient one. So old that most of the world, certainly the developed world, has forgotten it exists. Indeed, the World Health Organisation sets the point at which elimination officially occurs at 1 case in 10,000 people, and according to official statistics, all countries – except Nepal, Brazil and Timor-Leste – have this status. The assumption of the public in the West that it is practically non-existent is therefore understandable. Yet leprosy remains a huge problem in countries all over the globe today.

In 2007, the WHO counted 17 countries that had over a thousand new cases of Leprosy. However, these figures are likely to be – in some cases large – underestimates. These countries have been under a great deal of pressure to reach the target of ‘elimination’. Official figures are often tampered with in order to meet criteria; for example, immigrants with the disease may not be registered. In cases like in Nigeria, doctors I have met say that the numbers of cases they have seen simply don’t match up to figures that have been recorded.

 Soon Nepal will reach the official elimination figure, joining all the other countries that have supposedly conquered the problem. But even if the figures were correct, there still remains in these countries a humanitarian crisis. “Elimination” does not mean “no leprosy”; rather, it means that it is no longer a “public health problem”.

The definition of “leprosy” is confined to those in whom the bacteria are active. Once treatment is completed, they are not – officially – leprosy sufferers anymore. This is true from a medical perspective, yet the ulcers continue to develop and disabilities and deformities remain. And so the sufferer is still very much a ‘leper’, still vulnerable to intense stigma from the unsophisticated societies whose margins they inhabit.

 It’s a crisis because people affected by leprosy stand at risk of isolation. It’s a crisis because the unaffected world now believes there is no longer a problem of leprosy – it has been “eliminated”. It’s a crisis because people don’t perceive any need to put money into a problem they have been led to believe no longer exists – no need to support places like Lalgadh. Future funding in Nepal is being cut as it nears “elimination” status, just as it has been in other countries around the world.

The situation for charities like The Leprosy Mission (TLM) and the Nepal Leprosy Trust (NLT) has got even worse in recent times due to the recession. I was in Nigeria for 5 weeks from July 2009 and in that time TLM Nigeria had to sack 6 (of their 50-odd) full-time staff because of budget cuts due to lack of donations.

Part of the reason leprosy does not get the attention it deserves is because it does not affect western society – actually that’s not quite true; there are currently around 5000 cases of leprosy in the United States. Still, leprosy is only present in very poor societies where a poor diet and lack of sanitation mean a poor immune system; allowing the leprosy to infiltrate the body. As it (generally) doesn’t affect the west very little money has been put into it compared with what it needs to stamp out the bacteria, marginalisation and to care for current disabilities.

Khokana, a Leprosy colony outside Kathmandu is an example of the inhuman segregation that the leprosy stigma causes. There are around 250 people living on the colony, 160 of which have a disability caused by leprosy. The rest are family who have no choice but be brought up on the colony. It’s only funding comes from the government. Each ‘leper’ gets 400 rupees (about £3.40) per month to live off. Even in Nepal this is nowhere near enough to live on. The fact that a government funds (very poorly) a society to prevent reintegration (which supports the public notion that leprosy is incurable and very contagious) is as far as I can see totally inhumane.

Dr. Hugh Cross (of ALM) told me once of a woman he met in Nepal. He mentions her in the introduction to a collection of stories he gathered from a number of interviews with leprosy-affected individuals from Nepal:

“A character who was not included is one who probably had the most profound influence on the conception [of this compilation of interviews]. It was through her that I began to see beyond my own interpretation of suffering. She is a small woman called Thamini Majhini. She is an illiterate hill woman, shrivelled by hardship.  Her amputated foot is obvious to the onlooker, but was not mentioned by her as being disabling so I asked her about it. It transpired that she had leprosy for many years and was not treated. The leprosy left her with an anaesthetised foot which developed an ulcer. Because of the ulcer the villagers ostracised her, leaving her to catch fish and range through the jungle for food.  She will tell you that hunger and pain are not real hardships, they are a way of life for everybody (in her world at least) as is the rain that causes her shack to fall in year after year. Hardship is being excluded from the quarrels and intimacies of family; it is being snagged out from the flimsy fabric of village society. These she could not tolerate.  Such was her sense of desolation that one day she accosted two men on their way to cut bamboo. Having cunningly convinced them to lend her a khukri (a heavy, curved multi-purpose metal knife) to cut a branch she walked over to a fallen tree trunk, put her foot on the tree and hacked it off with the borrowed blade.”

I’ve seen begging many times before. In Kathmandu I saw beggars that had deformities from diseases like polio, TB and leprosy. I do not condone begging, though I had to admit that the only begging I’d seen until Nigeria was in touristy cities like London, Prague and Kathmandu.

One of the last places I visited in Nigeria was a town called Kuta. There I met an old man called Mohammed Damargo; he has one arm with half a hand with no fingers, no toes, and worn away palette and lips so he can’t speak clearly. Each day his son takes him to market in a wheelbarrow to beg. He has little control over his mouth and lips, and finds it nigh on impossible to eat anything else other than dried maize corn. His life is begging to fellow Nigerians barely better-off than he, in a very poor town at the wrong end of a country with alarmingly unfair wealth distribution. Yet because of his poor uneducated background and severe disabilities, Mohammed has no other way of finding money to live on.

I do not wish this documentary to be just a record for the future. It must be used to change the present situation in these countries and making the extent and seriousness of a disease that can cause complete social exclusion known to the western world is the first step in truly fighting it.  Perhaps it is naive to think that photographs can have a positive effect on the situation, but I always remind myself of what the humanitarian documentary photographer W. Eugene Smith said: Photo is a small voice, at best, but sometimes – just sometimes – one photograph or a group of them can lure our senses into awareness. Much depends upon the viewer; in some, photographs can summon enough emotion to be a catalyst to thought.”

I have photographed leprosy in Nepal and Nigeria so far, but I want to visit another 6 countries over the next few years to show how leprosy affects individuals in a variety of societies. Leprosy is curable, and there is no reason why it should still be present today.

For more on Tom Bradley’s photography and his leprosy project please visit www.tom-bradley.com.