Just a day back…
They are sitting and having dinner. In the dining hall – many people. This is nothing special, I know. But this time it is different. I see it when I watch the people and it will keep it in my mind for a long time. But let me explain first:
I’m here in the rural learning center where I use to stay when I’m in India to run our disruptive leadership weeks and to develop further – together with my local project managers from the KKID. There are many programs and trainings taking place in this center- for and with other NGOs from India, on topics such as administration of non profit organisations, project management and international collaboration with partners, topic-related programs such as water projects /child protection, but also soft skills. Sometimes some external NGOs come here, too and run their own programs in the very nice surroundings and facilities. Being here means to me a great opportunity to learn and to understand the diversity of India and its people, to discuss and interact with people from so many different regions, with different cultural, educational and personal background. It’s a place where the “world with all its dimensions” is reflected.
When I watch the people I discover that these people are different. many of them have disabling injuries, some of them have lost fingers, sensation loss in their hands and feet, others are very thin, malnourished. And – it very obvious – they are rather listeners than talkers.
It is a program for leprosis infected people.
These people suffer from leprosis. They have come here from many parts of Tamil Nadu and even other Indian states. Mostly it took them hours, even a day to join. The people have a rather poor and low educational level, but there is something in there eyes I would call a crying desperation. Stigmatized people, pushed out and forgotten by society.
Officially, there are 130.000 new cases of leprosy reported in India – every year.
But the rate will be higher 2 – 3 times.
They have come here to learn about soft skills, about how to find positive mindset for their own lives. There are also some young people among them. “There are a lot of issues, not just purely disease-related,” tells me the trainer, “even among their communities, there are generation conflicts, desperation, many financial problems, the understanding that they are not welcome, not able to conduct life as it has to be, not able to care for others any more… they are all under treatment and not infectious, but the stigma is there and one of the most critical parts where no solution is available.”
I’m asking myself what did them make come here. Some hope must be still there, even the life conditions of these people are indescribable.
Infected children and women
Since children are most susceptible to leprosy, they face worse discrimination and ostracisation from childhood, including the denial of basic rights and medical care. And also women are in worse conditions than men.
While watching around I acknowledge a women, she is looking at me, intensely. I look at her and send her a smile. She continues looking at me – and I to her. Suddenly, she starts to smile, too and it’s like a like a wave of happiness that runs through her face. From time to time during dinner we look at each other and smile again. It seems she is testing what she is learning in the program. I have rarely lived such an intense moment like this one.
When she leaves the dining hall she raises her hand – in a very shy, but visible manner – sends me a very tiny bye.
Today, in the morning they are all back for breakfast. Also the lady arrives at the entry. She stops and looks around. When she sees me sitting at the back of the hall the smile in her face turns back, she waves her hand for a happy good morning greeting.
The only way to make a dent on leprosy, according to the researchers, is to improve the rate and speed of detection. But with the stigmatization and the often very poor conditions of the families this will be quiet difficult.
However, a smile does not cost anything, but it could give so much hope to all of us.
Extract from Why the rest of the world doesn’t suffer from leprosy like India does
“Leprosy is a chronic infectious disease caused by the slow-growing bacterium Mycobacterium leprae, which has afflicted mankind since civilisation itself….although the primary treatment for leprosy—a triple antibiotic course called Multidrug Therapy (MDT)—is provided free of cost by the government, new research suggests that many who suffer from the disease are driven close to financial ruin…Leprosy is a chronic infectious disease caused by the slow-growing bacterium Mycobacterium leprae, which has afflicted mankind since civilisation itself. It is thought to have originated in East Africa or South Asia in the Late Pleistocene and migrated to India around 2000 BC.
However, once detected and treated by MDT, in 98% of cases, leprosy ceases to be contagious and can be cured in six to 12 months. If it gets detected too late, though, leprosy can cause nerve damage and conditions such as erythema nodosum leprosum (ENL), a painful immune-mediated reaction causing fever and angry inflammation of the skin, eyes and joints, which calls for powerful steroids or thalidomide, and continuous follow-up visits….
As a result, a lot of patients want total anonymity even if it impacts their treatment. Some of them don’t want vouchers for free MDT (multi-drug treatment) because they’d have to claim them at a nearby hospital, and then everybody would come to know…A lot of patients also refuse to wear micro-cellular rubber footwear that evenly distributes the weight of their feet, which are deadened or “anesthetic” due to chronic nerve damage. If they were to wear regular slippers, the constant pressure on the parts of the sole bearing most of the body’s weight can cause little pressure sores that quickly work their way to the bone. But the shoes, and what they signify, can also get them thrown off a bus or train, make them lose their jobs, or get legally divorced.”