If the link doesn't work

Hmm, I hear the link isn't working for many of you. Well is you jsut go to www.infochangeindia.org, it's the first story under "features." It's titled "Village of Hope."


Or, you can make life simpler for yourself, and just read it here. Yay for copy-paste functions! ;)

Village of hope

By Aditi Rao

I’ve known many kinds of handshakes: strong ones that speak of self-assurance, unsure ones that suggest awkwardness, handshakes that end as hugs, and handshakes that proclaim civility instead of closeness. But the handshake I most remember is different from all of these. It was when, for the first time, I shook hands with a woman who had no fingers.

Suma has had leprosy for almost 20 years. Several years ago, her fingers had to be amputated as a result of the disease. Suma can barely do her household chores and is not in a position to work. Although she is entitled to a government pension of Rs 450 per month, Suma does not have an ID card or any other documents that could help her obtain her due; she is forced to beg for a living.

Nor is Suma’s story a lone one. Although the Indian government announced in December 2005 that leprosy had been eliminated at the national level, a careful reading of the statistics reveals that the problem is still widespread: “elimination” of leprosy is simply defined as less than 1 in 10,000 people having leprosy, but eradication is a long way off. Today, India is home to over 50% of the people affected by leprosy globally. The effects of leprosy can be seen all over the country, especially in the more than 700 self-settled colonies inhabited by leprosy patients around the country. Further, in Delhi, where many leprosy patients from around the country have fled for treatment, leprosy has not even been eliminated yet.

In Tahirpur, on the outskirts of New Delhi, a 20-minute cycle-rickshaw ride away from the Shahadara metro station, 4,000- 6,000 leprosy patients (estimates vary from organisation to organisation) and their families inhabit the Municipal Corporation of Delhi (MCD) leprosy complex. The colony inhabitants tell me that the complex was formed in the 1970s, when Indira Gandhi’s government decided on a “cleanliness drive” of posh Central Delhi areas like Connaught Place. Since then, the place has changed and grown, with different groups coming in to work with leprosy patients in the complex.

One such NGO is Village of Hope (VOH), an initiative of Hope Worldwide, a charitable organisation founded by the International Churches of Christ. In the beginning, Hope Foundation focused its work on medical care, but soon it became obvious that without relocating homeless leprosy patients to more hygienic surroundings, this work would be futile. In 1996, therefore, Hope reached an agreement with the Delhi government: the NGO would take charge of providing homes for the leprosy patients, and the government would take charge of providing water and sanitation facilities. Construction was carried out in three phases, and today, the Village is home to over 800 families. Apart from providing basic housing and amenities to the leprosy patients, the Village also provides basic medical services and economic rehabilitation programmes for the colony residents.

Nevertheless, life for the colony residents continues to be a struggle. Many of the people who live in this colony have been cured of the disease but remain unable to return to their homes for fear of the continuing social stigma; they came to Delhi for treatment and end up staying on here because there is no other place where they feel accepted and understood. For instance, Radha, who has lived in the Village for the last five years, talks about how her parents, siblings, and relatives have never attempted to contact her after she left her village for treatment. While Radha still lived at home, her 10-year-old sister had developed leprosy wounds, and Radha used to bring home medicines for her too. Now, she longs to visit home and check on her sister’s treatment, but does not know if that is wise: Her husband reminds her that she has little children to look after—she cannot risk returning to her village.

Parvati, who has now been cured of leprosy, tells another heartbreaking story of discrimination. Her eight-year-old daughter, Prerna, developed a mysterious fever when she was a few months old. The doctors gave her an injection that cured the fever but left her badly crippled. Today, Parvati cannot educate her in the neighborhood MCD school—the only nearby school that accepts children of leprosy patients. Therefore, Parvati spends over a third of her monthly government pension on sending Prerna to a school for the physically challenged. Parvati recounts how she goes to pick up her daughter from the bus stand even when she herself is running a high fever. The bus will not drop off children if there is no one to receive them, and Parvati does not dare ask her husband to pick up Prerna: his leprosy wounds are still obvious, and they fear what will happen to her daughter if her schoolmates find out about the leprosy. Pooja is only eight now, but her parents’ fears about the double-discrimination she is likely to face in the future, are palpable.

Village of Hope has been working on economic rehabilitation of leprosy patients and trying to secure jobs for the now grown-up children who still live here with their parents. As Kavita, one such young woman, explains, she was never fully aware of the stigma of leprosy while she was a child: all her friends’ parents also had leprosy, as did the family members of almost all the children who studied at the neighborhood MCD school, so she did not understand the full extent of the discrimination she would face later. It is only when these children grow up and try to obtain jobs that they realise how much the discrimination against leprosy patients affects entire families; work is hard to come by once it becomes known that they live in the “kodi colony.” The Village has been able to successfully obtain jobs as waiters, sweepers, or watchmen, for some of these inhabitants, but many others have been permanently disabled by the disease, often had one or more limbs amputated, and remain in their jhuggis for lack of alternatives or government support.

Nevertheless, in many ways, the Village is indeed a hopeful place. Far from home and bereft of family support, most of these leprosy patients have created new families in the Village. As I sit in one of the little huts, watching a couple, their three young children, a “mooh-bola bhai” and his family, crowd around a few cups of tea and a game of cricket on the tiny television in one corner, I am struck by the warmth I see there. Yes, these people have witnessed more struggles than most, but they have also found joy and comfort in their own way. And they have not lost the dignity it takes to look someone in the eye and shake her hand.

(All of these stories are from residents of Village of Hope. All names have been changed).

(Aditi Rao is a Delhi-based researcher)

InfoChange News & Features, April 2008