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The Loss of Pain: Inside a Leprosy Colony in Kolkata, India

The Ghandiji Prem Navas Leprosy Center in Kolkata, India, is located adjacent to the railroad tracks, formerly the only place lepers were allowed to live. 
The Ghandiji Prem Navas Leprosy Center in Kolkata, India, is located adjacent to the railroad tracks, formerly the only place lepers were allowed to live. All photos by Karl Grobl for CRS.

Across the Tracks

One of the first things to catch my attention on a recent visit to a leprosy colony in Kolkata was the proximity of the railroad tracks.  Here on the outskirts of one of India’s largest cities (and one of the world’s poorest), the phrase “across the tracks” carries an entirely new meaning — when meeting people living with leprosy, you find them living on the tracks.

I was traveling with Father Bobby, one of our partners who manages centers supporting thousands of people who are among the most destitute in the world.  As we approached the doors of the Ghandiji Prem Navas Leprosy Center, he read my mind.

“You see, people with leprosy were not allowed to use the main roads.  They were only allowed to use the train tracks.  That law existed until the mid-80s,” he says.

That is why you find the front doors of this center closer to the tracks than most train platforms.  It’s situated squarely in the heart of a community.

Mugal Singh, 12, is learning to dress wounds, and the center sets aside part of the wage he earns for his future.
Mugal Singh, 12, is learning to dress wounds, and the center sets aside part of the wage he earns for his future.

‘We Want You to Stand’

If everyone could walk through these doors, the stigma associated with leprosy would become history.  Here on the campus-like grounds, people are running a factory, hospital, salon, garden, and school.  Seclusion and shame, if expected, are not here.

India leprosy colony - children dancing
Children of parents with leprosy welcome visitors with a dance.

Our first stop was the primary school for children of parents with leprosy.  The cuteness factor was off the charts as the children were quick to show us a dance.  In addition to the cultural activities, they benefit from an accelerated education, daily meals, health care, and a variety of services that otherwise would be unaffordable to most of their families. 

We had a chance to meet some of their parents working in the gigantic factory next door.  When we entered the long, narrow building, it took a second to take in what was in front of us: row upon row of monstrous, spinning machines with men and women — young and old, with varying degrees of leprosy — manipulating the sophisticated machinery.

At the center, people affected by leprosy help out by running spinning machines.
At the center, people affected by leprosy help out by running spinning machines.

This factory, fully administered by the patients, makes bed covers, bandages, clothing and, most notably, all of the white saris (with the famous blue stripes) worn by all of the sisters of the Missionaries of Charity all over the world. 

“All of this can be done by machines, but we don’t want to use them because then you don’t need people.  Rehabilitation is about people,” says Fr. Bobby. 

The first row of machines is for making bandages, which is also the entry-level position.  The center goes through more bandages than it could ever produce — between 30,000 to 50,000 bandages (a few tons’ worth) every month.  Participants at the center earn money for their work. The average income is about $40 a month, based on production, and everyone is rotated to maintain equality. 

“We keep them occupied.  A patient has 24 hours to look at his disfigured hand, his distorted face.  So naturally they will go inward.  The only way out of this is to give them a job … to convince them it’s possible.  They would tell us, ‘You think I can work with this hand?’ We would tell them, ‘Even with no leg, we want you to stand on that leg.’

Nearly all of the people had skilled work before, but lost their jobs because of the symptoms or stigma of their disease.  The value of working here goes beyond salary.  People receive free medicine, health care and links to important government and social services. 

“The dignity you get here you don’t get outside.  You can earn more on the outside.  Begging, you can get [between $5 to $8] a day.  But, when you come here, walking in the morning, people say, ‘Where are you going?’ and they say, ‘I’m going to work.’  At night, when they’re walking home, they say, ‘I’m coming home from work.’  It is said with pride.  They are productive members of their community.” 

Workers at the center take pride in the opportunity to use their skills to once again earn a living.
Workers at the center take pride in the opportunity to use their skills to once again earn a living.

The Loss of Pain

One of the greatest struggles for people who have leprosy is that, even if they are cured, the vestiges of the disease remain. You may see people with damaged or amputated limbs when, in fact, they have been healthy for years.  

Fr. Bobby, who receives sincere adulation wherever he walks, put it to me this way:  For you and me, pain is a curse.  For those with leprosy, it’s the loss of pain that is a curse.  Such a loss for us would be a blessing; for people with leprosy, it becomes a lifelong source of ostracism.

Father Bobby visits patients in the center's medical facility.
Father Bobby visits patients in the center’s medical facility.

Leprosy destroys your nerves — sensory nerves, which control feeling; motor nerves, which control movement; automatic nerves, which control glands and secretions.  With no feeling, you can hurt or cut yourself; and with no movement or sensation, parts of your body become dry, which makes skin easier to crack, allowing infection to set in.

When you walk into the medical center, it looks modest in its setup, but is actually sophisticated in its staff.  A dentist, skin specialist, eye specialist, homeopath, general surgeon and two gynecologists come once a week, and an orthopedic surgeon comes for an intense monthly stretch of 48 hours in which he performs as many as 20 or 30 operations.  

“Patients ... receive massages and training so that they can care for their muscles,” says Father Bobby.
“Patients … receive massages and training so that they can care for their muscles,” says Father Bobby.

The day-to-day nurturing comes from Fr. Bobby and the nurses, who visit every day as much in tune and in touch with the individual patients as they were the day before.  In the evenings you can hear them advising the men and women in the rows of beds to take their injured leg or arm in their hands and examine it, to see if any sharp objects have penetrated the skin.  They tell them to soak the limb in water and oil so it remains smooth and supple.  They ask them to continue this care when they go home.  The patients nod and say “OK.”

“The reality is that, as a beggar, who has the time to look at your leg and smooth the leg?  They are worried about their stomachs,” explains Fr. Bobby.

“We want the patients to enjoy and take pride in what they are doing,” says Father Bobby.
“We want the patients to enjoy and take pride in what they are doing,” says Father Bobby.
 

‘What We Need to Heal’

The center has come a long way since its origins in the early 1950s when sisters from Mother Teresa’s house would come with mobile clinics filled with leprosy medicine for the communities.  Now, it is an all-encompassing center, still supported by CRS and the Missionaries of Charity, and managed under Fr. Bobby and his order.  Fr. Bobby’s goals remain high. 

“Full rehabilitation will be possible when all their needs — educational discrimination, social discrimination, employment discrimination — don’t exist; when leprosy is truly eliminated.  Bacteria may be eliminated, but a man with leprosy continues to exist.  Violation of human rights is what we need to heal.”

It’s hard to imagine that as recently as the mid-1980s, when I walked school hallways belting Duran Duran’s hit “Planet Earth,” laws were in existence half a world away keeping people from walking on Kolkata’s (circuitous) version of Main Street.  But Fr. Bobby and this center are pushing the boundaries — so much so that he hopes when we come back that one of the only traces left are these railroad tracks. 

“Real rehabilitation means reintegration into one’s village, family and place of work.  As long as they have wounds that are healed — and the new ones are having treatment early enough — people are less likely to have deformities.  We have good treatment now.  It will be a wonderful day when we can close this factory.”

This dispatch was filed by Caroline Brennan, South Asia regional information officer for Catholic Relief Services.

A group of children whose parents work in the center’s factory, garden and hospital.
A group of children whose parents work in the center’s factory, garden and hospital.

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9 Responses to “The Loss of Pain: Inside a Leprosy Colony in Kolkata, India”

  1. PRADEEP KUMAR Says:

    It’s nice to know about the integrated rehabilitation.

  2. Grace Ayuelu Says:

    So facinating what the leprosy people can do dispite loss limbs as they contribute wholy to the nation. I worked in Sudan in a leprosy colony as they were banished from their original homes and t the centre they were able to make a living. Even though the support was minimal but the important part was creating awareness and prevention of disabilities so all were taking care of each other a responsibility that was taken by all. Again I’m happy to say that with assistance from German Leprosy Relief Association I got trained to make multicellular rubber sandals. Training was offered to selected people to make the sandles as income generating activity. At the same time in that region there was lulu fruits used to extract oil which later through their effort for picking the fruit and paid incentive . Its great working for the welfare of leprosy people and that when one can understand them better.The fact that they suffer from leprosy does not mean that they are not usefull members of a community let us shun this old belief ,lets support, live with them as one family
    Great work in India and do keep up

  3. Julie Says:

    Beautiful and inspiring story. Let’s hope that India’s boom will help these people, and that with education the stigma will be no more.

  4. Shradha Samuel Says:

    Could you provide more information about how to volunteer at this place

  5. Ajay Says:

    its good for leprosy patients

  6. Thana Says:

    I would like to volunteer, could you provide me with the add and any contacts over there…
    Thanks

  7. Celso Mollo Says:

    A great cause with compelling photographs. The photographer showed us here the emotions on people’s face and the whole story in a few images.

  8. carol elliott Says:

    I really feel drawn to volunteer in the rehab of leprosy patients . I am a registered nurse and live in New Zealand and really need more info as to how to proceed. I thank you in anticipation of a response

    Carol

  9. Dr.Paul Poelzleitner Says:

    Hello! I am dr paul. I´m coming from Austria.My profession is a general practitioner in medicine and additionally have a fellowship in homeopathic treatment. Would be very happy to get the opportunity to see Your center and probably working in any way there.
    I will stay here in kolkata for 6 Month. So there is time enough for investigating any opportunity to help and treat leprosy.
    With best regards
    Dr.Paul Poelzleitner

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