Very excited to announce that I’m going to have an exhibition of the leprosy project at the Art Gallery in St Paul’s School in London on 30th September. If you’re able, I’d love you to come and see how six years work looks on the wall of a gallery. Some of the stuff you will have seen on the blog and my website (www.tom-bradley.com) and some has been newly shot this year.
Do RSVP (info@tom-bradley.com) if you’d like to make it. Many thanks
Here is the Press Release…
“It’s most important… people need to see that those in Khokana can enjoy life too.”
I am told this by a woman in her late 50s called Laxmi. She is one of the chiefs in Khokana leprosy colony, a state-run (of sorts) collection of houses and rooms just outside Nepal’s capital, Kathmandu.
I’ve been editing A LOT of photographs to do with my leprosy project recently. As well as staring at a computer screen all day, some of the images can get to you. Among my recent edits have been personal photos I took from a stay at Khokana leprosy colony. I have plenty of stories to tell from this place, but the words of Laxmi (at the top) rung with me recently, so for today’s post I thought I’d dig out a couple of the more joyous moments I experienced.
An elderly, disabled resident of the colony who can’t walk is carried by his brother and Bikash (whose parents are both affected by leprosy and who was my translator and a good friend) in a tarpaulin out onto the grass where he sits quite happily for much of the day. Khokana, Nepal 2013
Hari Maya, 73 almost wets herself laughing at how she’s dressed up a neighbours daughter in a bonnet and glasses. Khokana, Nepal 2013
So I’ve been travelling for a little over two months now. I’ve photographed in several parts of Nepal, and I’m now in Nilphamari, Bangladesh. I have a lot to show you, but I’ve been too busy taking photographs rather than editing them.
However I quite liked this rather over-exposed image I shot this morning of some patients having a shave in the corridor of the leprosy hospital where I’m currently at. Looks rather surreal.
Meanwhile, if you’d like to see some more of the places I’ve been, then check out a selection of my best instagram snaps.
In many ways, it seems that self-stigma can be worse than stigma coming from others. It’s silent, and builds from within, corroding hope and strength.
This man preferred not to be named. He represents a vast number of diagnosed and cured leprosy cases in India who will not tell anyone they have leprosy for fear of bringing shame upon themselves, their family, those close to them, fear of rejection, fear of the reaction of others. I’m hoping the story I wrote will give a human side to an anonymous photograph.
Writing based on an interview (verbatim as translated). Recorded in October 2012 at Karigiri hospital.
He’s a small, wiry and young farmer and he’s terrified of anyone he knows finding out he had leprosy, including his own mother.
He was diagnosed 10 years ago at the age of 17. When he was told what he had, his father was with him. Neither of them understood the diagnosis.
“My father told me that we haven’t hurt anyone, so why does God want us to be punished like this?” Together they decided not to tell anyone.
“He safeguarded this secret until his death. He passed away about 5 years ago.”
His situation would not have been as bad if he had taken the medicine as instructed when he was first diagnosed.
“I thought it was just a small patch and without knowing the consequences I stopped between taking the medicines and that’s one of the reasons that I got footdrop.”
“When the doctor explained to me about the consequences – that is a disease which affects the nerves and skin and all that – then I realised the importance of taking the medicine and took it regularly for 6 months.”
Unfortunately by this time it was too late for a complete recovery. His drop foot was operated on, but he retained some anaesthesia and he is currently in hospital due to a large ulcer on his foot.
I try to imagine what it’s like, having a burden like this without telling anyone you know. His expression is stony, I can tell his emotions have long been buried, wrapped away from the world. I asked him how he took the news 10 years ago.
“I felt very bad and I wasn’t able to accept it. I went to the extent of committing suicide.”
I asked him how he sees his future. He has clearly contemplated it already.
“If I’m affected today by one day, I don’t know if other parts will later be affected also… I should not depend on anybody – my brothers and such. Up until when I can look after myself I can survive. After that… I want to commit suicide or something. I want to commit suicide…”
The psychiatrist, Valsa is with me, and despite numerous counselling sessions there has not been much progress. “It can be very difficult to change people’s mindset on this.” The depth of self-stigma is great.
The man talks further. “If my brother and mother say accept me, I don’t believe they’ll still truly accept me from the bottom of their hearts.”
So deep is cultural thought and fear about leprosy, that he won’t even believe people who say they are ok with it. He knows that he might not be condemning only his life, but if anyone else found out, theirs too.
For that reason he doesn’t want to get married – his concern lies in the lives of his wife and children. Knowing the pressure of mothers for their sons to get married, I ask what his excuses have been.
“I just said don’t ask me anything and don’t force this on me. At present I don’t want this and I’ve got out of this situation.” He knows this won’t satisfy an Indian mother though. “Until she leaves I’ll survive like this and after her death nobody will bother me about it.”
I ask if there’s anyone at all who he shares this with.
“I have best friends, but I very seldom talk to them.”
Not even his brothers?
“No. Whatever has come to be, I let it go with myself. I’ll go to the temple. I’ll stay one whole night in the temple. Talk to God, sit there, cry and pray and come back the next day. Nobody asks me why am I going to the temple and sitting and staying there for the night. I won’t even tell family members.”
He looks at me. “We can seek help from people, but not at the cost of lifting us and looking after all our personal needs.”
“Until I can earn and eat for myself I’ll be there.” He says about staying with his family. “But if a situation comes when I cannot survive the next moment by myself… I’ll end my life.”
I thank him for letting me interview him and shake his hand. He wheels himself back to his ward in a decrepit wheelchair, carrying with him a burden he stubbornly plans to bear for the rest of his life.
All from a man who has medical and social help whenever needed, and has not been contagious for almost 9 years. Until he willingly, bravely decides to share the truth with his family, there is little anyone can do to help him.
I’ve just posted a new series of photographs on Leprosy Eliminated? and other stories. It’s, as this title suggests, about three communities: Enyindakurom – the ‘leprosy village’, Ankaful hospital, and St Clare’s – the care home for those severely handicapped by leprosy. Theoretically there’s a linear relationship between the three; one gets leprosy and goes to the hospital; they then get placed in the nearby leprosy settlement (naturally, with improvements on social welfare and human rights, this doesn’t happen any more); then after they become too frail, or infirmed, they get moved to the care home.
It’s a crude direction. It is, no doubt reflected in the lives a few individuals at the care-home, perhaps even lives to come in the leprosy community.
Yaa Dede, 55, got leprosy age 31 and has 6 children. She says of her future: ‘I don’t have any aims. I relied on my farming. Now my leg’s amputated I have nothing to do. I can’t go and work in the farm again.’ Ankaful Hospital 2012
Kwaku Ananko’s fingers, feet and eyes are severely damaged by leprosy. He’s in his 40s, a musician, usually on his bicycle and seems to be in a perpetual state of delirious happiness. Enyindakurom 2012
Maame Esi lies in her bed. Above it hangs a certificate of thanks from the Franciscans given to her just seven years ago for all her hard work. St Clare’s 2012
You can view the whole series of photographs here. If you would like to receive occasional updates on new additions to the project please fill out your name and email here.
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.
Hi all, it would be great if you could click to vote for me. It could mean the chance to win $5000 funding to help complete my project Leprosy Eliminated?. If you click vote on your favourite, or the following image that would be brilliant.
Thanks, Tom
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