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The dignity of lepers

Appeared in "brand eins", 27.08.2010

Von Autor Markus Wanzeck

Marianne Grosspietsch visited Nepal. Shocked, she founded an aid organization. With humor and determination, she has built an organization where lepers can make a living.

Nepal is the struggling bohemian garret under the eaves of the world. In Nepal, what can go wrong will go wrong, and the list of possibilities is endless. Perhaps that is what makes it an ideal setting for a story about simple gifts and happiness. And perhaps it suits that story to begin somewhere else entirely – on the High Street in Dortmund, Germany, a vintage 1950s shopping district of easy-care brick and concrete. Catty-corner from the Casino Royal and Schickle’s betting parlor is the modest storefront of Shanti Leprosy Aid Dortmund. The shop is called “Ganesh” after the elephant-headed Hindu deity known for overcoming obstacles, and it looks like a wild-eyed pharmacy on drugs. Picture windows nestled in a façade of stodgy white reveal a colorful interior festooned with prayer flags. The sales floor is taken up with Himalayan kitsch and handicrafts. In the back office, a box of Nepalese-made angels waits for Christmas and Herbert Grosspietsch sits at a desk wearing a loose shirt of lilac-colored silk. “I’m just a pencil-pusher,” he admits, taking care of project administration and bookkeeping, necessary paperwork, and letters to 4,000 friends and supporters. It is a full time job that keeps the former technical equipment salesman busy in his retirement. Like Shanti, Ganesh was launched in 1992 by Herbert’s wife Marianne. But while the shop has remained small and unassuming, Shanti has grown into one of the largest private aid organizations in Nepal – a nation with no shortage of private charities. Nearly 1,500 people now benefit directly from its largesse. Shanti staff refer to them as “family.” Shanti is a family-run enterprise, and Marianne is its driving force. Her daughter Dori handles the shop, her husband Herbert keeps the books. A handful of friends pitch in, along with a small partner organization in Nepal. Together, the two organizations have succeeded in meeting overhead and making rent for over 200 months in a row – a feat that runs to around 40,000 euros. In relative terms, 40,000 euros is not a lot of money. It is only about 27 euros per person per month for each member of the “family.” In Nepal, a little money goes a long way. Still, in absolute terms, 40,000 euros a month is a hefty sum for a small aid organization without a wealthy foundation or backers. How have they managed all these years? “It’s tough sometimes,” Herbert says. As he often does, even when standing up, he cradles his gaunt chin in his hand to hide a smile. His wife has her own theory: She says that “miracles” have dogged Shanti every step of the way. Herbert is also a believer, but the word “miracle” does not pass his lips this afternoon. “Shanti is simply its own cosmos,” he explains. A few weeks later, a different world. It is fall, but pleasantly warm as the clouds of the rainy season dissipate to reveal the shining peaks of the Himalayas. Katmandu, Nepal has around one million inhabitants. Colorful saris, dusty polo shirts. Cows, monks, trekking tourists. Too many cars. Too little electricity. Entire city streets are unpaved and lined with potholes. The sound of chanting and clouds of incense drift down the alleyways. Seekers from all over the world come here to find spiritual truth. Some never leave. The heart of the Shanti universe is down on the banks of the holy river Bagmati, not far from the Pashupatinath Temple where cremations waft upward in thin blue-gray columns of smoke: a brand new health and vocational center with workshops and a clinic. Solidly built, bricks and concrete, with wooden doors carved in traditional Nepalese patterns. From the windows, flamboyantly tinted images of Hindu gods monitor activity in the courtyard. Shanti asked its in-house cabinetmakers – leprosy patients – to build the windows. One of them is Ishaq Mansoor, 35. His hands have an odd shape, but his grip is firm. There is something gripping even about the look in his eyes. He is not a talkative man, but he is a good storyteller. His story could be that of any number of Shanti inhabitants, and it says a lot about how leprosy is able to persist in countries like Nepal. When the story begins, Mansoor is a 12-year-old boy. “I left home and went to India with my brother. We wanted to earn some money working in the fields in the province of Punjab.” His brother soon moved on. One day he noticed white spots on his skin. Occasional at first. Then everywhere. But, without his brother around, whom could he tell? He kept quiet about the weirdly painless blisters on his feet, even when they burst and had him sliding around in his slippers as if slogging through mud in a monsoon rain. After his feet swelled up like balloons, working became impossible, and he was fired. He limped away, not caring where he was headed. Many people would define happiness as a life without pain. But people who feel no pain live dangerously. Leprosy attacks the nervous system, robbing the extremities of sensation. In the end, you can injure yourself badly and feel nothing at all. If you walk barefoot through broken glass, you will need someone else to point out the trail of blood. First the hands and feet go numb. Pressure marks and blisters follow, then infected wounds that fester and rot. And little but visual input to alert you to the danger. Dr. Rameshwar Singh feels that Nepal and leprosy are well suited to each other. Now a portly, balding man with squared-off glasses, he co-founded the Nepalese branch of Shanti. Since then he has served as the “family” doctor, treating more than 200,000 patients over the last 18 years. He counts off risk factors: “Poverty, illiteracy, poor hygiene, malnutrition.” Leprosy is not highly contagious. In Nepal, it doesn’t have to be. A World Health Organization report from August 2009 cites a number of statistics on Nepal’s endemic leprosy: Almost 5,000 new cases were reported in 2008 alone. The disease’s stubborn survival is also a by-product of the isolation of many valleys and villages. Singh says the Shanti clinic serves patients who travel several days each way.

Still a social stigma

In Nepal, it can be meaningless to speak of distances in spatial terms. Only a few miles outside larger towns, you will find people living as they have for centuries, with multiple families sharing a single room. Close contact favors the spread of leprosy, a bacterial infection. But people here know as little about the causes of leprosy as they know about available therapies. Leprosy has been curable since the early 1980s through a combination antibiotic therapy. Untreated, the disease destroys the skin and nerves – sometimes decades after initial infection. Seemingly out of nowhere, bacteria overrun the body, crippling its extremities, covering it with boils and ulcers, sometimes rendering it blind. The cloying aroma of infection attracts rats that nibble the numb flesh off lepers’ hands and feet, Singh says. If there is nothing left worth saving, the nearly unrecognizable finger or foot must be amputated. You see them everywhere in the streets of Katmandu: beggars working the sympathy market, with nothing to offer but their own missing body parts. The cabinetmaker Ishaq Mansoor knows how it feels when pride becomes an unaffordable luxury. He fiddles with his white felt cap and tries to find words for the desolation he felt as he staggered numbly through the no-man’s-lands of India on two damp, swollen balloons. Finally, an older man, one of a group of migrant workers from northern India, saved the boy from his aimless wandering. Mansoor followed the men from village to village for three years. He was hardly able to help out, but his sponsor insisted he be fed. He even received medical treatment – if only the traditional healing arts of village elders. Their ointments had no effect. His legs failed him. His fingers curved into claws. Afraid he was falling apart completely, he left the group and went on alone. By sheer coincidence or the grace of Allah, he says, he landed first in a bus headed for Nepal, and then in a village where he had relatives. At first they did not recognize him. He had left as a boy and returned as a man, but the man had little in common with the boy. The man was a cripple, his skin strewn with ashen spots. They locked him out, then threw him a mat to sleep on and a few crusts of bread. He says he wished the ground would open up and swallow, so great was his shame and despair. Leprosy has been a social stigma for all of recorded history. Medieval Europeans regarded it as a divine punishment. In many regions of Nepal, it is loaded with similar metaphysical freight: Leprosy is held to be a karmic disorder, the just deserts of a former incarnation lived in sin. The worst pain that the ostensibly painless disease causes is the contempt of others. It is family and friends who makes the lives of lepers unbearable – unless they are ill themselves and know firsthand that a sick body is not a moral failing. In the Shanti “family,” Mansoor is not the “leper” he is elsewhere. Here, he is a cabinetmaker. He has lived on Shanti land with his wife, also a former sufferer, for eleven years now. They have built their own little house and are raising two healthy sons, Ismael and Islam. Like all proud fathers, he has a lot left to say about them, but it is time to go. With crooked but sure steps, he disappears toward his prayer rug. God is great, and He does not like to wait around. Marianne Grosspietsch, too, feels sure that God is great, along with Buddha and Shiva. One secret of the community’s success is the placid way it takes its family members’ beliefs seriously. “There’s no point trying to force western culture on to the Nepalese,” Marianne explains. Isn’t there something colonialist about the way development aid projects seek to intervene in existing cultural practices? She hears the question often and finds that such concerns are misplaced. “Development aid” is a term she prefers not to use. “It’s too unsubtle. We want to help people recover their dignity and joy in life. Is that really about development?” Shanti’s activities certainly constitute a form of economic development aid – but an unconventional form. There is no strategic plan, no P.R. department, no mission statement, no grantmaking organization overseeing daily goings-on. That may be one reason Shanti has kept going for so long. A vital skill in Nepal is the ability to dance with the chaos of everyday life instead of being defeated by it – a skill the the Shanti “family” has mastered. They have had plenty of time to practice. When Marianne and Herbert Grosspietsch traveled to Nepal for the first time in 1974, it was still a Hindu monarchy. The journey was to change their lives and the lives of many others, but initially they merely wanted to visit their Nepalese foster child in Katmandu, a boy named Puskal. After they saw his family’s living conditions in a state-run leper ghetto, the couple returned to Germany as a threesome – with Puskal, their new son. They had his parents’ blessing as well as that of a Nepalese princess. It was the first foreign adoption ever formally approved in Nepal. In the mid-1980s – Puskal had just passed his German university entrance examinations – the Grosspietsches returned to Nepal for the first time. But the reunion took on tragic overtones. Puskal’s parents had been disfigured by leprosy. His father had gone blind, and could not even touch his son because he had no hands. There were tears on all sides. Marianne Grosspietsch declared that things just couldn’t go on like this. And then, she maintains, she simply started to “do something.” She took the first few steps “with nothing but the hope that everything might somehow work out.” She rented a dilapidated school building, then went down to the Bagmati and offered shelter to a homeless leper. “Shanti Leprosy Aid” was officially established in 1992. The name was a bit of false advertising from the start. The focus was never exclusively on leprosy, but on human suffering generally. “I don’t think much of working according to plans,” Marianne says. “Shanti came into being and expanded without a plan.” A woman who had fled her husband in Bangladesh after he scalded her with boiling oil, orphaned children, AIDS patients, elderly people rejected by their families, people wounded in the civil war – all found sanctuary at Shanti. Today, most of project’s beneficiaries have never had leprosy. For some Neplaese, Shanti is their last hope. One morning 16 years ago, a boy was found lying on the doorstep at sunrise. His body was small and twisted, his head disproportionately large. His legs were atrophied and bent backward like a jackknife. He had spent five years in bed after an accident, and along with a severe back injury, he had tuberculosis. Tika Ram Khadka – that was his name – would die, and soon. On that point, he was as certain as the medical profession. Krishna Gurung, a physical therapist and at that time the manager of Shanti, advised him not to give up. Over a period of years, the two trained and stretched, until one day Krishna said, “Get up now! You can walk!” Khadka managed four steps, then plopped down on the floor like a baby. But he learned. And as soon as he could walk, he started walking to school. Today, at 26, he is still a short guy with a big head. But his office on the third floor gives him a commanding view of the Shanti compound. He is the assistant manger of the Nepalese branch, taking care of bureaucracy and bookkeeping in both Nepali and English. “A genuine organizational talent,” Marianne says. “Bright and fast.” Again and again, Shanti ran up against its own limits. But whenever employees found themselves telling desperate people to go away because the boat was already overloaded, Marianne found a way to add another deck. The ark of the pariahs grew “organically,” she says with emphasis. You could also say it grew at random. Asked to explain her success, Marianne says tersely, “I have visions.” As a young woman, she planned to complete a university degree in theology. Then she dropped out. It was too irrelevant. “I realized that I simply love people, especially kids,” she says. One thing is certain: The project could not have survived without her infectious good humor. Her strong will also helps. Marianne loves people, and she loves to give them directions. Her statements to journalists often start with, “Here’s what you should write.” Not long ago, she was the target of mafia-style intimidation. The Maoists who had conducted a bloody guerrilla war in Nepal before winning elections in 2008 asked her for 15,000 euros – “cost sharing” for construction work on the public road that leads past the Shanti village. Instead of paying, she went to the police and the German embassy. Then she met personally with the “Maos” and told them what she thinks of “cost sharing.” “They screamed until they were tired out. When I refused to be impressed, they began to argue with each other.” She smiles. “Divide and conquer.” That combination of charm, energy and awareness of her own power has allowed Marianne Grosspietsch to make Shanti what it is today: the largest leprosy NGO in Nepal – and its own cosmos. Rabi Moktan, manager of the Nepalese Shanti organization, conducts a tour of the new center on the banks of the Bagmati. Shanti moved in less than two weeks ago, and the place smells like fresh paint and garlic. “Here in the main kitchen, which is only half finished, we cook more than 1,600 meals a day in huge pots,” he says. The first shift starts at 1:30 in the morning to be sure the morning meal is ready on time. Opposite the kitchen is the woodworking shop where Ishaq Mansoor and three coworkers transform lumber into doors, tables and windows. And over there you can see the free clinic, Moktan says – on the ground floor Singh’s treatment room, next to it a pharmacy. “On the upper floor we house and care for 80 patients. Many of them are here for the long term. They’re bedridden, or orphaned children.” The entire clinic building was donated by the German Federal Ministry for Economic Cooperation and Development, with help from the well-known German comedian-turned-pilgrim Hape Kerkeling. He won half a million euros on the German version of “Who Wants to Be a Millionaire?” and turned it over to Shanti. In the adjoining workshops, Shanti members weave colorful silk scarves and sew cloth angels – Christmas tree ornaments destined for Germany. They land in the back room of the shop in Dortmund before swarming out to Christmas craft markets from the Ruhr to Berlin and Germany’s far north. Asking sick, needy people to earn their keep is an element in the project’s basic conception. Instead of a poor box for westerners with guilty consciences, Shanti operates as a business. Beggars become employees. To make people happy, you have to take away their fear of hunger and illness, Marianne says. “And they have to be able to develop their talents.” Work lends meaning and dignity. It can heal. And busy people have no time to brood over their sufferings. Cash income raises a person’s social status. Herbert Grosspietsch calls it the “healing side of capitalism.” The circulation of money brings the outcasts back into society. On the porch in front of one of the workshops, two men are grinding colorful shards of broken bottles into shapes on a grinding wheel. “They’re polio patients,” the manager explains. “Leprosy patients couldn’t do this, not with the numbness in their hands.” Worked into silver settings, the recycled glass becomes chic costume jewelry. Making jewelry from discarded bottles was another idea that originated with Marianne. Those who know her say it is typical. Shanti has had its own methane plant, fueled with agricultural refuse, since 2005. The word “trash” – isn’t it often enough an admission of a lack of creativity? Shanti inhabitants collect paper for recycling all over the city, then mix it with water into a cellulose slurry, roll it into wheel shapes and hang it on long iron rods in the sun to dry: high quality heating briquets. To survive as a small, family-run NGO, such ideas are vital. Self-sufficiency helps conserve charitable gifts – a scarce resource. And it creates jobs. In addition to the woodworking, jewelry studio, paper recycling shop and power plant, the Shanti cosmos also includes a chicken operation, bees, and organic farms that yield more than 100 kilograms of fruit and vegetables every day, enough to allow surplus to be sold in the marketplace.

A village of their own

Five kilometers upstream, past the funeral pyres at the temple and a distended pig cadaver that has been doing grotesque loops in an eddy for days, and five kilometers closer to the Himalayan skyline on the edge of the village of Sundarijal, there are two thriving farmettes. One is five “ropani,” the other 13; a “ropani” is 510 square meters. Four families, around 20 people total, live here off, and for, the Shanti organization. A man in a sleeveless undershirt sits on the patio in front of a brick house. Khakka Shahi, accompanied by his wife Kauli, cheerfully describes how they spend their days: “Egglants and guavas, cabbage and spinach, apples, papayas, squash, sugarcane.” The scent that wafts over from the orange grove is so intense it feels like a candy on your tongue. Shahi is actually from a village in Jumla District in Nepal’s remote, undeveloped west. He was forced into marriage at age ten. His bride was nine. He was one of eight children. Five survived infancy. His parents came down with leprosy, and then so did he. Afraid of acquiring the infection, neighbors expelled him from the village to a cave in the woods. His family, too, kept their distance. And so he ran away by bus to Pokhara, Nepal’s third largest city, with a population of 200,000. “When he arrived at the hospital, he didn’t look good at all,” Kauli says. She is his second wife and worked in Pokhara as a nurse. She had recovered from leprosy herself, so she knew what he was going through. His courage to start over from scratch appealed to her, and her approval appealed to him. As soon as Khadka was able to leave the hospital, they traveled together to the capital, many days away. They had heard of Shanti. Once they reached the Pashupatinath Temple, Katmandu’s sacred site devoted to Shiva and the dead, a wooden sign guided their last few steps. Then they got married. “For love,” she says, cackling gleefully. Love marriages are unusual in Nepal’s Hindu caste society – a stroke of luck made possible by leprosy. Their mutual affection gave them the strength to found a new family. In 14 years on the farm, they have raised more than just vegetables: a son and two adoptive daughters, orphans from the Shanti family. The Shanti model of self-sufficiency extends to construction activities. Two ridges farther down the road on the edge of the Shivapuri National Park, the Shanti “outstation” clings to a steep, wooded mountainside. A village was built here in 1994 with the active participation of its future residents. It consists of two-story pastel-painted residences, a weaving shop, an anthroposophist elementary school with 120 students and ten teachers, a home for severely handicapped children and a dining hall. The buildings interlinked with stairways and terraces. “That the inhabitants took part in creating all this has paid for itself two times over,” Santosh Chhetri says, an English teacher at the school. “With the construction expenses, obviously, and the people take incredibly good care of the houses.” They paint them, keep them up, decorate them. The village belongs to them. There is also a small health station, a little brick cottage with a wheelchair ramp open to poor people from the surrounding area. Every Tuesday and Friday, a jeep comes from Katmandu and the physician Sanjay Bhattachan conducts his office hours. They run from ten in the morning to three in the afternoon, depending on demand. “On Friday I had around 70 patients,” he says. He takes off his shoulder bag and sits down on the blue wooden chair in the “Doctor’s Room.” In the waiting room and out on the patio, a good two dozen patients are already waiting, some on wooden benches, some on the bare ground. He calls them in one by one with a desk bell, like a hotel guest calling the concierge. Ding, and an old woman with osteoporosis approaches leaning on an improvised cane. Bhattachan measures her blood pressure and looks into her eyes. She has no appetite and her back hurts. He prescribes pills. A coworker packs them into clear plastic bags in the waiting room. “You’re a strong woman,” he says in parting. Ding. A teenager with skin problems. Ointment should help. “And keep it clean!” Ding. An old man who drinks too much. The doctor appeals to his conscience. Bhattachan remarks that many of his patients’ bodily symptoms are just that – symptoms – so that his prescriptions can only serve as supplementary therapies. Born in Nepal, raised in England and India, Bhattachan does not rely on western medicine alone. With the ease of routine, he jumps back and forth between the two worlds, using the authority lent by his white jacket to provide spiritual guidance as well. “I send the people to this or that temple, tell them to worship this or that god. That gives them spiritual sustenance. And it’s good for their health.”

A cruel and captivating place

Ding after ding, the waiting patients file toward the entrance door of the treatment room while a large portrait photo of the royal family looks down at them from above the doorway. It is a picture from another time. King Birendra Bir Bikram Shah, a reincarnation of the Hindu god Vishnu, died on June 1, 2001 in a hail of bullets. Also depicted: His wife Queen Aishwaryia and their three children. Dipendra, the heir to the throne, is said to have committed the murder in the palace, then turned the weapon on himself. But who knows the truth? There are rumors of conspiracy to this day. But as early as 1996, Maoist rebels had declared a “people’s war” against the government. They took control valley by valley, wearing down the population and the steadily rotating rulers with assassinations and endless strikes until, in 2008, they won an election and could declare the republic. The last monarch has abdicated in Nepal. But corruption and chaos reign on. “In Nepal you have to develop a certain indifference,” Marianne says. She spends around five months in the country each year. “And on the other hand, you have to be incredibly focused.” And it helps a lot to have a sense of humor, she says. “Otherwise you’ll get into a bad mood fast.” She laughs. Nepal is charming and cruel, vibrantly alive with death never far away – a country where a bedridden grandmother may be laid out in the middle of the road under cover of darkness: One passing truck, and a great burden falls from the family’s shoulders. And it is a country where people make detours on their way to work in the fields to put flowers in their hair, savouring the beauty of every moment. Shanti suits this country, with its spontaneity and its hopes that everything will turn out fine in the end. “Sometimes this country beguiles you, and sometimes it beats you over the head,” Dori Grosspietsch says. Marianne’s daughter – pierced nose, hair a few millimeters long – is in Katmandu for a week on a purchasing trip for the store in Dortmund and Germany’s Christmas markets. Advent is around the corner, the peak season for Shanti craft sales. But when Dori enters the workshop in the new center, the sewing machines are suspiciously silent. The head seamstress explains that she forgot to order the material for the Christmas products and adds, “Sorry, sister!” Dori retreats into laughter. “It’s so hilarious! I love it!” That evening, after buying Christmas-compatible goods in the shopping district of Thamel, she claims never to laugh as much as she does here. Now and then, for a moment, her German upbringing breaks through. Then she begins to point out what could be done better. “We’ve grown too fast in the past few years,” she says. “We need to be careful. Charming chaos can turn very quickly into dangerous chaos.” Last year, Shanti resolved to accept no more new residents, except in urgent cases. And – miracle of miracles – the moratorium has been observed. The empowerment of the poor and downtrodden is working so well that it occasionally unnerves the Shanti staff. During a recent general strike declared by the Maoists, several dozen patients professed their solidarity, laid down their tools and loudly demanded a pay raise. “You get so much money in donations,” they insisted. “And all because of us. We’re the ones with leprosy. We’re the poor people they’re trying to help!” It was an impressive display of quantum entanglement: As soon as you help others, you become dependent on them. “If I had known how complicated this was going to get,” Marianne sighs, “I might never have started Shanti.” But, she says, she can’t abandon her charges now. Anyone who how she gets lost in the Shanti cosmos when telling a story, or seen her in the advent bazaar at Berlin Cathedral on a gray December afternoon standing behind a table full of silk scarves with a box of hand-sewn angels, behind her on the wall blown-up photos of Katmandu, around her neck a glittering chain of gaudy glass beads on which you can still read the Carlsberg label – anyone who knows her cannot shake the feeling that she is possibly being a bit coy. A life without Shanti? It’s not as if Marianne Grosspietsch has a choice. She created a cosmos, and it surrounds her on every side.