Submitted by Amisha Upadhyaya
I began working with gender violence and healing through HIV work just when AIDS was becoming a celebrity disease, and like most celebrities, constant exposure has bred a false familiarity amongst a public who think they know all about it. But, statistics confirm we have all been taken for a ride.
I had been on the ride a few years ago when inspired by what I saw as a volunteer, I wrote and won development money to develop a movie on the fastest growing infected population in India: monogamous women. To date, they constitute almost half of those infected, often by cheating male partners. Such a subject warranted a foreign film on the level of an “Amores Perros,” not a Bollywood extravaganza.
I worked in cities, towns, and villages, through local NGO’s and foundations like UNAIDS, The Richard Gere Foundation, PSI, and the Elizabeth Glazer Pediatric AIDS Foundation. I worked with college girls and professionals, housewives and migrant workers. There was a similar reaction everywhere.
None of the patients understood the plot of the film I was working on…you know, the one based on them, even the story of the character who reflected many of their lives: a housewife infected by a cheating husband. They thought it morbid and unromantic. And they hated the lack of song-and-dance.
I listened to them and the volunteers who were a mix of native Indian, NRI’s, and foreigners. The language being spoken to educate did not match the language the at-risk population understood. Worse, there was judgment even by me. Debates raged between frustrated works blaming mass media or India’s antiquated traditions oppressing its “meek” women. The volunteers and staff liked my script as is but…
Self-destructive? Yes. Meek? Not in the slightest. They worked 12-18 hour days, raised children and ran homes, withstood injustices that chilled my blood, discussed the future of their progeny with chilling clarity in the midst of their dying days, and often were sole breadwinners for extended families. My generation needed pills for a bad breakup or rocky childhood. They felt sorry for me being over 25 and single.
Though I was American for all purposes, the same could be said for many of the volunteers or program directors of the nonprofits I worked with who may have been born and raised there but were worlds apart due to their economic or education levels.
Some NGO’s acknowledged this bridge. Of all the non-profits I worked with, it was the ones with concrete mission goals, such as constructing a well, or who incorporated locals that were articulate, such as PSI did, that were most successful.
You don’t need to go to India to see these cultural gaps. You see it in Washington DC with one of the largest HIV populations in the country or in Newark, NJ or Los Angeles.
Unlike malaria or TB, two of the world’s deadliest killers, AIDS has more than medical impact. It directly relates to an individual’s beliefs on sex, marriage, and gender roles. Often these are dictated by religious faith and/or societal cultural norms, thus the stigma associated with it.
As early as 1998, results from the University of Sao Paolo showed that it was critical to develop culturally sensitive measures on sexuality, relationships, romance and intimacy to tackle AIDS prevention.
Fortunately, many steps have been and continue being taken, such as creating committees within NGO’s to build ethical guidelines by those from the community being served for volunteers and international staff, like looking at the value of serving the self first, which is very much a Western notion.
There was no committee when I was working. I simply had to learn to listen, to understand and articulate my own stereotypes, cultural mores, and inherent societal constructions that was shaping my speech, my actions, and decision making. I shut up and danced. Literally. With them.
The original script was ditched. It had to be if I was to be real, as real as “Amores Perros.” Yes, this would have love; yes, there would be songs. The script became perhaps the only musical AIDS film — singing the praises of people who were being buried even as they were struggling to keep on dancing.