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

Village of HOPE

Okay, my first story is up on infochangeindia; here's the link!

http://www.infochangeindia.org/features481.jsp\

This is exciting. More on its way soon! :)

Mera desh paagal hai!

(Translation of title: My country is crazy... although that doesn't do it justice!).

Why? Well, because I just found out I am going to try doing something innovative within the most bizarre educational system ever! Remember my newspaper in education workshops? Well, I signed the official paperwork for that today and went to the office to discuss remuneration. How do you think they'd pay a freelancer? By number of hours? Wrong! By number of workshops? Wrong again! they pay you by the number of students in the workshop... they pay you a certain amount for every 50 students who show up! And then they reassured me... don't worry, we almost always have 200-300 kids per workshop! Umm... and that's a workshop?!

This is going to be interesting. On one hand, it's hard to imagine that i will have very meaningful writing workshops in groups of 200 or more. On the other hand, with about 4 hours of work there a month, I can meet my basic monthly expenses. I figure why not? It will leave me enough time to write and to do other meaningful work without worrying about remuneration!

It also seems like I will be writing regularly for infochangeindia.org. I don't know what kind of a journalist I will make, but I did always want to write about and for the people I have met through my volunteer experiences, to share those worlds with my other worlds. Here's my perfect opportunity to do that; so why am I afraid? It'll take some figuring out, but yes, it looks like my work life is moving in a very interesting, not to mention unexpected, direction!

Keep watching this space for more stories as I write them!

A week in Pune

Ok, so I'm back now. I disappeared for a while because I was out of town and didn't have internet access more than once. Here is my news, then!

I spent the last week in Pune, a small city in West India (close to Bombay). I went down there for a fellowship interview, tickets and hotel paid by the host organization. Then, since I was going down there anyway, I decided to spend an extra few days catching up with some old school friends who are now studying there and my high-school sociology teacher, who now works and lives in Pune. It was an amazing week, surpassing the expectations I went there with.

First, the fellowship stuff. Had my interaction with the host organization, on Monday and Tuesday; will know the results by the end of this month. However, in the course of our discussions, several other opportunities opened up as well, some of them more exciting than the fellowship I originally applied for.

For one, they asked if I am willing to write for infochangeindia, possible South Asia's most comprehensive database on social justice issues. The director of this website was interested in my stories from the leprosy colony where I worked a few years ago and was also specifically interested in me reporting on HIV related issues from Delhi... for reasons many of you are aware of, HIV is one of the "social issues" that is also a deeply personal issue for me, so while the task of reporting on it is a bit daunting, it is still something I would definitely like to look into. They have also offered to fund my travels to any far-flung places if I want to report on HIV in the countryside rather than just in Delhi... again, that will require a lot of research and a lot of networking, but it could turn out to be very meaningful freelance work.

A different set of people also requested me to develop a "creative writing for social change" workshop module, offering to support me financially and otherwise. Depending on how the modules turn out, they might be able to fund me to take it to schoolchildren in different states of India and perhaps to an orphanage in Kashmir, which would all mean living in Delhi but traveling once a month or so for workshops. Again, will have to figure out the details and possibilities but sounds exciting.

Next, I moved to the home of my one time sociology teacher from high school, who now lives in Pune. I was able to spend a lot of time with Ma'am (dont read any hierarchy into that-- that was just what I called her in school and so continue to call her but my relationship with her is as informal as can be) and her husband since we had a four day weekend (here's the best part about "Indian secularism": Thursday was Eid, Friday was Good Friday and today (Saturday) was Holi... Since we claim to honor Islam, Christianity and Hinduism equally, all of these had to be holidays!). Just for those 3 days with them, the trip was worth it! These are the people who introduced me to Gandhi's notion of "live simply, so that others may simply live," and in living with them for a couple of days, I truly understood the power and beauty of this idea in ways that no book or lecture could ever teach me. Seriously, the warmest, most humble, most interesting people I know... the kind who really live non violence as a spiritual commitment and way of life rather than a mere political stance. The longer I spent with them, the more I realized why I chose to be out of college for a while... this is the kind of learning I want to do right now: meet and learn from people I admire rather than from textbooks. In that context, I am planning to apply for a few rural development programs if this fellowship doesn't work out... heading back into the villages for the first time after my Mexican summer feels like the most enriching learning context possible right now. I crave more hands-on learning!

This, then, is where I am right now: exploring all the different possibilities that have opened up before me, looking for my own right path. I have enough random freelance things lined up to earn a basic salary, but beyond that, I need to keep looking for the most meaningful work... some combination of the above possibilities is probably it for now. A close friend recently told me that he thought I knew exactly what I want from life, and I wasn't sure how to answer that; on one level, I do, and on another, I am clueless. I know my ends but am figuring out my means. And I know what I DON'T want to do-- I suppose that's a pretty good start?

At the same time, though, I realized that I don't want to reach a point where I can say "This is exactly what I want to do for the rest of my life"... that seems too boring, too bereft of the adventure I am seeking right now! So we'll take this one step at a time, and let's see where I land up!

3 Months Beyond the Hill

Today is March 14th. That means it's exactly 3 months since I formally finished life at SUA. A quarter of a year since that memorable going away party and the last time I spoke to or saw most of my SUA friends.

Wow. Where did the time go?

"What we remember in some way protects us"-- Sylvia Curbelo. She was right. My memories do "in some way protect me." As I shift homes, leave behind old ones, or return to older ones, I have formed a little home in my heart that somehow manages to encompass everyone from all my different worlds. I have a collage in my room that contains about a 100 photos from SUA, Argentina, and Mexico; looking at it here in my room in New Delhi, I truly feel "at home".

They have been an interesting three months, a topsy-turvy three months, a full-of-so-many-changes three months. In these three months, I have said goodbye to a home of four and a half years, made a new home in my little apartment in Mongolia, then left it within 2 weeks (those two weeks also feel like they were much more than 2 weeks), and then set about reclaiming a home and an identity back in New Delhi. That makes it seem like so much happened in this time.

But they have also been three months of idleness. Apart from that brief stint working in Mongolia, I don't have much to show for this time. Or I do: a couple of poems and a more relaxed me! I did need some time to recover not just from Mongolia but also form the hectic-ness of the last couple of years! In that sense, it's been a good holiday.

I've had enough of a holiday now, though. I'm ready to move on to the next phase of my life. And I am going to do that within a few days.

That's all, there isn't anything very interesting to say about it. I just felt like I had to write this note when i realized how long it had been! :)

Discovering Delhi

Is anyone still reading this thing? Well, if you are, then this is my attempt to check in and tell you that I haven't forgotten about this blog...

So. Now that I have moved back to Delhi, I am setting about discovering it in new ways. Before it gets too hot (which it will soon, too soon!), I want to explore some of its layers, niches, and intricacies. I've said it before but continue to be struck by this: in so many ways, moving home after 4 1/2 years has been like moving to a new city, albeit a familiar one.

I found an amazing little writers' group here 2 weekends ago. Heard some amazing poetry, offered and received some critique, and spent many hours listening to and laughing at other people's stories (yes, I was very quiet this first time, but things will change soon!). I thoroughly enjoyed myself and felt more grounded in Delhi for having shared an afternoon with people I don't know but can relate to so well, just like at SUA.

I'm also setting out on heritage walks, discovering places around my house that I haven't explored in a while. Hauz Khas Village-- right in the heart of South Delhi, only 10 minutes from home-- was an exciting trip. This 14th century institute of higher learning is today a large, mostly abandoned, but incredibly beautiful complex (check photo album for more). I need to find more friends who want to do these things and explore more such places in Delhi. Delhi-- the city of 7 cities-- and most Delhites (myself included, unfortunately) can't even name five of them! Well, I will soon, so when you come to visit me, I'll have a special city to show you!

More soon, as life back home unfolds further.