I learn about leprosy, enter a biblical world, and chalk up greetings with village women; I meet mechanics and woodworkers, seamstresses and PowerPoint pupils, radiant wrinkles, springing physio, and biochemical remembrance.
My great Auntie Maisie was effectively my third grandmother and spent her life serving The Leprosy Mission (TLM – see leprosymission.org.nz). My sister and I often stayed at her house in Christchurch during school holidays. It was full of dolls and puppies and teddy bears, crocheted baby booties and sweaters she’d knitted, scones and cakes and jars of marmalade, all made for the annual fundraising fair. In her china cabinet were carved elephants and alligators, paintings of women in saris on dried leaves, small brass sculptures and lamps – souvenirs from countries like India and Indonesia where she’d visited Leprosy Mission work. Her slides and prints caught my imagination. I was delighted at the opportunity to follow in Auntie Maisie’s footsteps a little and visit the Leprosy Mission myself this year.
A TLM worker picked me up from my guesthouse in Lucknow. We drove east to the small town of Barabanki where TLM staff placed a floral wreath around my neck in welcome. An outpatient hospital was founded here around 1968 and now sees on average 250 patients per day. Around 30% have leprosy, with other conditions also treated or referred.
Over half a million people are still newly diagnosed with leprosy every year, making one new case every two minutes, with over 5 million families affected, mostly in developing countries. Leprosy is far less infectious than most people fear – it can’t be caught by shaking hands – and is curable with inexpensive drugs in 6 to 12 months if treated in time. Its social stigma in India has decreased, said a doctor, but many still report it too late to prevent irreversible damage. He said that Muslim women are often the worst as skin disease isn’t noticed with their bodies fully covered.
In recent decades TLM has expanded beyond medical work. I was taken to see their Women’s Empowerment Programme in two villages. The first had a population of 916, with 153 school-aged children. I was told the other had 500 people and 300 cows. I climbed out of the air-conditioned jeep and felt like I’d stepped into a Christmas nativity scene, or a Sunday School picture of Ruth gathering grain in the fields. What I’d glimpsed from train windows (see here), I now viewed close up.
Huts with thatched roofs and mud or straw walls. Wealthier houses of brick. Black cows with bony butts roped to stakes, some calves, only a few dogs. Deep brick-walled wells. Hand-cranked iron wheels with blades to cut stalks that were then tied in bundles and stacked in golden piles. Villagers threshing grain and stalks with tiny mustard seeds that reminded me of Gospel parables. Most people were sociable, some were shy; a few women pulled saris over their faces when I passed. Children were curious; one lad waved a plastic gun making laser sounds. No one was in any way grasping or wanted anything from me all day! What a contrast to the cities. A few bikes and diesel-powered machines. The weather was very dry so the air a bit dusty, but it was bliss after weeks of urban congestion – both vehicular and nasal.
Cow dung is dried for fuel just as I saw from trains and as happened in Bible times (see Ezekiel 4:15), or prepared in TLM vermin compost pits before spreading on the fields to improve crop yield. TLM has built several brick toilets for villagers who struggle to go in the fields, like a blind boy and a lame woman. Maybe they’d been forewarned that a foreigner was visiting, but these were almost the cleanest loos I’ve seen in India! Hand-pumped water for washing. A guy charged his phone with a cable on a mains power pole.
In a concrete community hall, two dozen women waited patiently on a blue tarpaulin. All wore clean beautiful saris. A few men and boys leant against the walls, while the staff and I sat on chairs or a rope mattress. I was greeted with two more floral wreaths, and had my best Hindi experience yet. I introduced myself and tried to ask questions; TLM staff clarified my words and translated the women’s replies. Until recently, most were fully illiterate. Having learnt to read street signs, some are now confident enough to venture outside their village for the first time. Some of the most educated women have written symptoms of leprosy on walls, alongside TLM’s logo of Jesus embracing a leper. Several villagers have read these signs, diagnosed themselves, and reported to hospital in time for treatment.
The women filed up to chalk their names on the blackboard: Sangeeta, Sunita, Shrikanti. Some proudly wrote their whole address, or added up a simple sum. It occurred to me that I could join in. After quietly confirming the spelling, I grasped the chalk and wrote in Hindi, “Hello. My name is David.” Such fun! We come from different worlds, they are native speakers and I just know a few phrases, yet we can both only stumblingly, messily write the script. I think I was maybe better. Already having the concept of letters and the motor control in my fingers, I just had to change the font. The surprising human connection was a highlight of my trip and I went to bed buzzing that night.
I asked their favourite time of year and they said Holi, for new clean clothes as well as the colours. (In my experience clothes didn’t stay clean for long at this festival: read about my Delhi Holi here) The hardest time of year is the rainy season, when thatched huts leak. That’s a contrast to city-dwellers who long for the rains to cool the scorching summer. The women and girls sang for me: folk tunes honouring one’s mother, devotional songs to their gods, easily remembered ditties about vaccination. TLM also performs street plays and puppet shows to teach about disease prevention and child care. As we left I gave the wreaths to two girls who’d sung.
I’d heard that educating women or girls is the most effective means to fight poverty – for example, read the article “One solution to many problems: Educate girls” by Shashi Tharoor. The TLM work here was a living illustration.
Yesterday we drove for two hours to a larger TLM complex in Faizabad. They’re doing fantastic stuff here, but the recession has reduced Western funding, and the crooked state government doesn’t help. They have 8 hours of power on a good day and diesel for generators isn’t cheap. When I asked whether things might improve under the new government, they appeared optimistic.
I spent the morning meeting students from leprosy-affected families at the Vocational Training Center, which was founded in 1992. A poster read,
All we teach them is self-reliance. Look how God makes their lives productive. They can sew, they can sow, they can reap. They can spin, they can learn, they can teach. They can fix almost anything and have great selling skills too…
I saw the evidence. Boys in blue overalls were learning to repair car engines, or TVs and phones, or refrigeration systems, with posters of the physics on the walls. Woodwork pupils construct beds and cupboards, some for outside contracts, and metal work students repair insect mesh. An old man was spinning thread to be woven into cloth. Girls in tidy red-checked uniforms sewed stuffed rabbits and dogs, kids’ clothing and bags – the sort of things Auntie Maisie used to make back home, though here they used pedal-powered machines.
Another class of girls was learning computer skills and showed me the PowerPoint slides they’d made of friends and movie stars. Their course builds up to simple programming in C. After lunch we visited a craft fair where the TLM girls had a stall displaying their sewing. They borrowed my camera to photograph each other with me – now I’ve got some teenage girl fans here too!
In a home of thirty elderly men there were radiant smiles as they clasped my hands between their gnarled fingers. A blind man sitting cross-legged on his bed seemed profoundly content. Another with missing teeth and shirt stained with the oil that treats his skin jumped up with a shining face to sing me two choruses. I didn’t get much beyond a few words like “Jesus” or “love”, but it didn’t take much to see his joy. Although crippled and owning almost nothing, with little more to do than sit and talk and grow onions in their garden plot, they were richer in gratitude and happiness than most of us who have so much more.
The Faizabad hospital was established in 1938 and I had a little tour. In the physio ward patients held up their hands. Some were clawed, awaiting surgery; other patients were post-op and could straighten their fingers. They demonstrated their rehabilitation exercises of compressing springs and picking up blocks or beads. Many return to work and quickly damage themselves because they have lost sensation in their limbs. Before they leave they are taught to protect themselves by wrapping sharp or hot implements in cloth, and are given leather sandals with custom insoles.
The doctor said some don’t finish their course of medication and in the past the hospital sent postcard reminders, but is switching to text messages as most patients know someone with a phone. In the biochemical testing lab, a diagram of blood cell development was flanked by photos of G Armauer Hansen, who discovered mycobacterium lepra in 1875, and a classic painting of Jesus that I’ve seen throughout India (see here). The same picture used to hang above my holiday bed in Auntie Maisie’s spare room.