The difference

The following are descriptions of three different places. They are all places I was able to visit where people who have had leprosy are living. I believe that you will find, as I have, that there are some startling differences … despite what most would see as their all-important similarity.

. . .

They don’t actually open the gate. A chain stays wrapped through some openings in the metal near the top with a padlock passed through two of its rungs, leaving enough slack for the sections to be pulled wide enough apart to squeeze in and out through. Kasinath arrives and we help him pull his bicycle through the opening, banging and scratching the already-chipped blue paint off the gate. Today I barely recognized him as he rode up, dapper with his hair slicked to the side, wearing a light burgundy button-up shirt. He’s been to pay the electric bill, he tells us, a short trip to the edge of town, but worth dressing up for none the less. It helps to appear more professional when you’re representing the place he does.

Michella sits on her rope bed as we pass with her feet flat on the cement floor of her porch where the bed sits. She’s always there, on that bed. Her long, thin hair is interwoven with strings of grey but her eyes speak her age much more loudly. They’re sad, tired. She musters a namaste, lifting her hands to her head in respect as I pass, but the warm greeting makes me feel somehow guilty and patronized, knowing this front of energy is only for my benefit.

We begin to work, ripping out the weeds and grass in front of a small house where guests used to stay so that it can now be used for extra planting. Lallan and Ramdular are there helping us as we sweat despite Ramdular’s bad back and aching knees. Over my shoulder I hear some of the local boys climb onto the stone wall 20 feet away. It doesn’t take knowing the Hindi they’re speaking to know that they’re jeering the old men, for mocking transcends language. Their low, exaggeratedly-crazed voices describe what they must feel about these men that have shown us nothing but warmth and decency. Do they really feel this way? Children, those who we say are pure and blameless? What have we taught them and why have we taught them to hate?

The buildings here were once majestic, lined in the front by romanesque columns and white marble. The concrete and marble are crumbling now, though, and even the statue at the front, a bust of the colony’s founder, has stains creeping down from his finely-sculpted hair. Fourteen people here now, in this place built for over 100. It’s a good thing, I suppose, for less people means less segregation, less exclusion. It’s quiet as we leave, though I suppose it’s always quiet. I wonder if it’s like this everywhere, or if there are perhaps places less forgotten?

. . .

We’re now on a bridge, crossing over a branch of the Ganges River, people everywhere contributing to what I’ve come to know as the sound of India, and intrusive and constant noise, air horns on every truck that have been supercharged in order to fit into the country’s driver safety policy of "honk first, check your mirrors never." The driver suddenly dodges off the road onto a dirt path more jarring than the three-wheeled vehicle likes to handle. It’s not more than 15 seconds and I’m looking down a row of tightly-packed dwellings, single rooms, really. The central walkway is dirt and smoke floats throughout the dirty gathering as some begin to heat charcoal to cook the night’s meal. The blare of televisions can be heard through open windows, a sound that seems somehow out of place when I consider the primitiveness of my surroundings.

"There was a festival today," my guide says, "so they spent a long time there, for their jobs." I absentmindedly stare in the direction of two wooden carts sitting near a stone ledge. The smiling man sitting near them takes this as an opportunity to demonstrate and hops in, hollering at his friend to push him along. He stretches out his deformed hands, first to the right and then to the left in further demonstration, pandering to an unseen crowd.

The old man has been feeling sick today and was lying under a blanket when we arrived with just his feet poking out from the bottom. But now he sits up to tell me about this place that he founded in 1972 when so many of them needed a place to live. He tells me about their current situation, that the government will give each patient no more than 150 rupees ($3.75 USD) a month, clearly not enough to live on these days. And of course they cannot find "real jobs," no one would dream of hiring people with their sickness, their impurity. And so what choice do they have but to go out every day and put themselves in a place where they can be seen and, hopefully, pitied?

There is another option, my guide later tells me. Any of these people would be accepted at the aging colony just eight kilometers up the road in Sarnath. There they would get food, clothing and a place to live. What they would not get, however, is "cash money," as he puts it, to spend as they please. There would be no television sets or betelnut (the local tobacco product) because the committee sees these items as superfluous, as luxuries. And luxury is not something the committee has made itself in the habit of providing.

And so the question stands for each as such. Live simply, while provided for, in a world somewhat forgotten, or keep oneself in the center of it all and eke out a daily living with the palms of your outstretched hands? Is this all? Are these where the choices stop? Or could there be something more?

. . .

The knock at our door comes early. It always seems to come early. I pull on my unwashed pants and fumble with my belt as I make my way towards the door. I swing it open to see Maddaum there, a goofy smile on his face as he tells the blinking, shirtless foreigner. "Breakfast, ten minutes." He turns on his heel and walks away, a slight limp as he favors his left leg, holding his withered left arm up against his side. At breakfast we eat in silence despite the fact that a five man crew is working around us, dodging in and out of the kitchen. One man finishes dishing me out some curry with eggs and then turns to leave before I remember to ask for a bottle of water. "Excuse me, sir," I say to the man who is not yet five feet from me. He doesn’t turn to respond and I realize that I have again forgotten that the man who has served my breakfast, the whole kitchen crew, in fact, is deaf.

We have come to Anandwan upon learning of its amazing programs and treatment of leprosy patients and the disabled. They are not only provided with a home, food and clothing, but also with jobs that they work for "pocket money," which they are free to do with whatever they please. The place houses a textile center, greeting card production facility and even an area where they shred down old plastic bottles into a fine enough consistency that they use it to stuff mattresses which they then sell to hotels. Another program was started a while back that brings kids off the street, giving them the opportunity to live at Anandwan for a year where they work and learn a trade like metalworking so that when they return to their cities they have a skill that they can market.

Before we leave I make my way down to the accounting office to settle for our room and board costs. A distinguished gentleman with a grey moustache tells me the bill and then takes the money I hand him. As I’m walking out of the office, I glance back and see him pull out his ledger and begin to flip through it. It’s not until then that I notice his nubbed fingers, a reminder of the disease that had once stricken him, flipping through the pages expertly.

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