electrification

Last month I had the privilege of visiting two non-governmental organizations in Tamil Nadu as an ambassador of Dasra, my host organization. In addition to working with investors and philanthropists, Dasra mentors and incubates Indian non-profits and social businesses so that they can most effectively scale their impact. The purpose of my site visits was to conduct due diligence on these organizations’ vision, strategy, and organization.

I spent my first day at the office of the Muscular Dystrophy Foundation – India (MDF-I) in Madurai. MDF-I aims to improve the lives of patients with muscular dystrophy through direct intervention and policy advocacy. The office also serves as a central meeting point for patients and relatives to hold support groups and obtain medical advice. But mostly it is a respite from the travails and hardship of the outside world. It is a place where a mother can take her crippled son to play, where his condition will not be met with curiosity or disgust. It is a place to relax, to feel accepted, to cry, and to heal.

The founders of MDF created the organization after their son was diagnosed with muscular dystrophy, a degenerative muscular disorder that results in acute pain and breakdown of the nervous system, and often leads to death. Instead of trying to have a second child, as their relatives and doctors advised, they dedicated their lives (and their life savings) to the creation of an organization that would improve the conditions for other patients with muscular dystrophy. Instead of being parents to a second child, they are a rock for hundreds of children in and around Madurai.

To say that I was moved is an understatement. I was electrified. I was humbled by the grace and courage of MDF beneficiaries as they told me their stories. I was outraged by the conditions of their lives. I was angry and helpless and so, so sad seeing parents watch their children fall victim to this disease before their very eyes. Is there anything more painful than watching your child slowly die? Knowing that the research and knowledge necessary to alleviate the pain of these patients was out there but inaccessible was frustrating. Knowing that relatively small sums of money were what stood in the way of making their lives a little easier was maddening.

Patients and parents treated me as an honored guest during their support group meeting. The founders insisted that I be the one to give wheelchairs to patients during a simple ceremony. They placed children on my lap and snapped pictures while parents looked on with pride. I had trouble knowing how to interact with these families. How could I compliment mothers on their children’s beautiful smiles and astute observations when we both knew that their children were in intense physical pain, and would never live to adulthood?

How can I admire the strength and character of the destitute while maintaining my outrage at their conditions, and my commitment to creating change? How can we as a society preserve their most admirable qualities while giving them access to the opportunities that we enjoy? And how can we do so in the least condescending and the most empowering way?

On my second day in Tamil Nadu I visited another one of the NGOs with whom Dasra works. Manitham, which is based in Manamadurai, provides after-school classes to Dalit children that focus on self-confidence and empowerment. At Manitham I had the opportunity to meet with program mentors, who hail from the villages they work in and are often graduates of the Manitham program itself. They asked me pointed, critical questions about my previous work experience and drew parallels with their own stories. They encouraged me to visit them at their homes so that we could get to know each other better. One took me to her village, a Dalit colony specially created by the government to placate both caste Hindus and Dalits. She introduced me to children far too small for their age who were enrolled in Manitham’s programs and offered me bananas from the tree outside of her house. I felt awed by her hospitality. I wondered at the quiet beauty of the village surroundings and I reveled in the sweetness of the bananas.

But is it really fair of me to praise her lifestyle, when she would rather have more and I already do?

How could she treat me as an honored guest when the cost of my plane ticket – or god forbid, a cup of coffee – could substantially change her life? How can I comment on the freshness of the air in a Dalit colony when the truth is that I’d never want to live in one myself? How can I compliment a student on her art project when I’d never want my own child to go through that school system? And how can I go home each day knowing what is taking place all around me?

In Mumbai this paradigm is an especially difficult quandary. When should I be suspicious that people are taking advantage of me, and when should I give them the benefit of the doubt? When should I bargain for the market rate, and when should I let 50, 20 – or even just 5 – rupees go? How do I know when to stop being cruel and start being generous? Alternatively, when should I stop acting like an idiot and start getting real?

My roommate and fellow-Fellow Lauren and I have discussed this issue at length, and have come to a tacit compromise with this situation: we simply opt out. Instead of arguing with rickshaw drivers, we walk everywhere we can. Instead of locking up our belongings before opening our door to the maid, we mop our own floors and we scrub the dust out of our own clothes. And along the way we manage to have a bit of strange fun ourselves. Instead of paying our building’s trash collector the two hundred rupees per month he requested, we don’t pay him at all. Instead, we take our trash bags out ourselves, asking guards from nicer buildings if we can kindly dispose of our waste in their trash cans. And they laugh, because however strange Mumbai is, it is pretty weird for a foreign girl to ask you if she can throw her trash away in the dump that most people try to avoid.

I suppose my objective, as Arundhati Roy put it herself, is: “To love. To be loved. To never forget your own insignificance. To never get used to the unspeakable violence and the vulgar disparity of life around you. To seek joy in the saddest places. To pursue beauty to its lair. To never simplify what is complicated or complicate what is simple. To respect strength, never power. Above all, to watch. To try and understand. To never look away. And never, never, to forget.” “

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One thought on “electrification

  1. This was a very enlightening post which required that I look at all the compliments I give, questions I ask, and bargaining that I do. Thank you.

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