Okegbala, in Nigeria, is a settlement made up of three large hamlets and a leprosy hospital. The residents are there because they, or their parents or grandparents are affected by leprosy – originally moving to be near the leprosy hospital. Here are portraits of three of the residents, all affected by leprosy, the last of whom is blind.
It’s been a while since my last blog post. I’ve been busy – though perhaps that’s no excuse. The product of this busyness is however something I can show. You may have guessed it by the title.
The official project name is now Leprosy Eliminated? and other stories. Though the Leprosy Eliminated? part/question of the title is an overriding theme (and in fact quite an expansive one), I’m not looking for a singular story. Part of the idea of this project is for record and that means it should encompass anything that’s interesting. Obviously that’s subjective – so it in fact encompasses anything I find interesting. Hopefully you will share my interest on at least some of the stories.
You may ask why I’m doing this. Good question. There are a lot of reasons. You can find out more in the About section of the website.
Meanwhile here’s one of the reasons that I decided to pursue this documentary through to the end. It’s a note I received early on, having attended a church service at a leprosy colony in Nigeria. I was overwhelmed, slightly embarrassed and ultimately humbled to receive praise like this that I was not expecting and didn’t deserve. But the way that it referred to “us, the rejected”, made me realise just how important it can be to highlight the lives of some – even if it’s just a few.
I’m hoping to engage people in the project – educate about leprosy, show photographs, videos, stories of those who are and have been affected, those who have spent a lifetime committed to fighting the disease, and the various whys, hows and ways that leprosy can affect individuals and communities.
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.
I’ve got an exhibition of the photos I took in Nepal and Nigeria coming up (details tba), and among some of the photos will be some landscape ones to give a wider view of the places these people live. Here’s a sneak preview.
This photo above is of Khokana leprosy colony just outside Kathmandu in Nepal. It’s seclusion from other settlements is surprisingly blatant in such a crowded area of the country.
At first glance this could be a village on an African beach a stones throw away from the Indian ocean; dry sand and palm trees are not the first thing you associate with Nepal. To the locals however, the sun and dust just mean a prolonging of the drought… when I took this photo they hadn’t had rain in 7 months.
On many of my evenings at Lalgadh Leprosy Services Centre in Nepal I climbed up the water tower to watch the sunset. Because of the dust the sunsets weren’t at all dramatic, just a dull red ball that faded out before it even dropped below the horizon. This is the opposite bank of the dried-up river Lalgadh rests on. Once the Monsoon comes however, the river carries the melted ice from the Himalayas and it becomes a churning torrent that is extremely dangerous to approach.
This is Zuma Rock, a great monolith that is Nigeria’s version of Ayer’s Rock in Australia. This was one of the first photos I took in Nigeria as I was driven from Abuja where I landed to Minna in Niger state where The Leprosy Mission HQ was.
This is Okegbala leprosy community in Kwara state where I stayed for 10 days. Many houses proudly stand their aerials, despite not having a television or electricity for 6 months since a transformer at the local power station blew. The government has still not fixed it.
I only got to visit Oyi for a few days, and because I wasn’t able to stay in the village I stayed a few miles away in a hotel with a wonderful hill behind it. I was half way up when I noticed this boy following me. It shows just how green and lush the grass was around it.
I visited Kuta in Niger state for only a few hours. I saw these two boys passing their time by pushing each other around in wheelbarrows.
I walked into this room in Okegbala Hospital, Kwara State, Nigeria and the light coming through the one window was so clear I thought I’d stay here for a little while, photographing the doctor examining his patients. This woman was the first patient. She had a few light skin lesions on her arms and the doctor looked them over. I took this photo as he told her what I believe she probably knew already: all the signs pointed to her having leprosy. Later lab tests confirmed this. It takes 7-10 years for the leprosy bacterium to reveal itself in a body through symptoms such as skin lesions and areas of numbness, so even if she hadn’t been around people directly infect with leprosy in the last 7 years, it may well have been contracted well before then.
Mohammed Damargo kindly invited me into his yard to listen to his story and photograph him before his son took him to market on a trailer so he could spend all day begging. He was 16 when he was diagnosed with a disease some 40 years ago by a native doctor. He took the prescribed treatment which was a mixture of pounded leaves and dirty water left to infuse together for 7 days. After 10 years of taking this medecine but without improvement a European man came along who immediately diagnosed the disease as leprosy and came back the next day with drugs to take. He took the medecine for 1 and a half years before moving to Kuta, the current area he’s in which used to have a clinic nearby. He’s lived here for the past 30 years. In that time, due to skin lesions and damaged nerves parts of his body have become infected and he has lost one lower arm, most of his hand on the other arm, all his toes and much of his face has sunken in making his words hard to distinguish. He finds hard to eat anything except a bowl of dried maize off the cob. Each day his son takes him to work in the wheelbarrow (shown) where he begs. It is impossible for him to do any other work and he gets no benefits as we might in this country.