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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.