Sunday, August 15, 2010

Tenacity and Positivity in the Face of Stigma

A joint report in July by the World Bank and the International Center for Research on Women revealed stigma as a key factor in the increase in HIV/AIDS cases in India. Over the course of two months, Jyoti, Candice and I witnessed the ramifications of stigma in the local region: misinformation, marginalization of people living with HIV/AIDS (PLWHA), and decrease in self-efficacy. We also understood that education alone cannot effectively combat stigma; directly engaging the HIV/AIDS community in the dissemination of information and maintaining a tenacious and positive attitude are equally important.
Four weeks ago, we attended a support group meeting where a faction of the HIV/AIDS population came together to share their daily struggles and receive updates on medication and health checkups. Most of the attendees were women from low socioeconomic backgrounds with a sorrowing past. When we questioned the women to assess their needs and understand recurrent problems, they mentioned hostility and discrimination from family and community as a persistent issue. Despite these issues, all the women had a positive and determined attitude, and they refused to let difficulties dictate their lives. The disease was eroding their physical health, but they were energetic throughout the discussions, leaping at the chance to offer their thoughts on ways to reduce stigma.
Our meeting at the Community Care Center (CCC) was yet another learning experience on tenacity and attitude. The CCC was located in an austere room inside a dilapidated hospital on the outskirts of Dharwad. During our visit, we were informed that it would be closed down within 2 days due to staff shortages and depleting resources. A week later, we learned that plans for a new CCC were already in motion. Kahlil Gibran once said, “The optimist sees the rose and not its thorns; the pessimist stares at the thorns, oblivious to the rose. What was initially a setback for the staff at CCC and their funding organization, KHPT, was turned into an opportunity for improvement. They focused on the potential of the CCC and decided to build upon its positive attributes.
After witnessing the tenacity and positivity of the stakeholders and the HIV/AIDS community, we were inspired to tackle our remaining issues with the same attitude. Although our goal of creating a centralized database and assembling training materials and FrontlineSMS software guides were completed, we still have yet to resolve the technical issues. We are certain that they will be solved, and we plan to continue our correspondence with the local NGOs to make progress on the issues.

Sunday, July 18, 2010

Creating a Network

“Things will change when you get to India”. This was echoed throughout the pre-departure planning stages for our project. We had a very clear understanding of our purpose for this project: resolve the technical issues and expand the software into other NGO’s, but we went in knowing that these objectives could change dramatically.

Now having spent over a month in India, we are fortunate in that our project has not deviated greatly from the proposal we began with. The NGO’s that are working with us are extremely organized and have realistic goals and expectations that were communicated clearly and promptly from the beginning. Despite the pre-departure planning, there have been many challenges that we did not anticipate. Specifically, the length of time needed to resolve the technical issues that these NGO’s are facing, the technical knowledge needed to implement the program, and the identification of possible expansion opportunities for the software have proven to be the biggest challenges.

However, we have been able to take a step back from the urge to focus solely on fixing the technical issues and analyze the most efficient growth for the SMSFrontline software. After meeting with multiple stakeholders working with the HIV/AIDS community, we have identified a need to expand the program and create a more efficient network to connect all the stakeholders that are currently using the SMSFrontline software. A centralized database would allow the NGO’s we are working with to share their data to create a more automated and structured tracking, referral and follow up system. In order to create this database, we have enlisted the help of various sources- LEAD students from BVB College, a software engineer and, our own teammate, Kailash! We are hopeful that this database will streamline the data flow currently being implemented and improve the overall data sharing between the NGO’s. So what do we envision? We hope that a specific NGO can refer a patient to register for a support group via SMS, and the support group will receive a message regarding the referral. If the patient attends the support group, the support group can then send a SMS message back to the referring NGO to confirm the registration of the patient. All of these messages would go through the central database and a history of the patient will begin to accumulate. With such limited resources, the NGO’s can benefit greatly from this system and will allow the NGO’s to spend more time working directly with the community members.

Because our program involves numerous stakeholders, there are many people we consider “champions”. Among the top “champions” is Venkatesh, our KHPT advocate, whose passion has allowed our software to be implemented seamlessly into key NGO’s. In addition, Joshi from BCT, who has a wealth of knowledge regarding SMSFrontline software and is eager to see the software become successful, and most importantly, we have our team of technical gurus- the LEAD students and Jaya, a software engineer who have been tirelessly working on debugging many issues within the current software. We have assumed the role of the facilitator for this project, and without the dedication of these various “champions”, we definitely would not be able to complete our project.

We still have much to do, but we definitely think that we can accomplish a great deal by remaining flexible and adapting to the needs of our NGO’s.

Sunday, June 27, 2010

"Women Hold Up Half the Sky"

They sat cross-legged on the woven jute mats in the middle of the unpaved cul-de-sac daubed with sporadic flora and remnants of Styrofoam cups and chocolate wrappers. The village women, barefoot and wrapped in humble chiffon saris, recounted how they cared for the orphans and ensured their basic needs and education. With no wealth to speak of, these women had voluntarily assumed the duties of a parent to orphans affected or infected with HIV/AIDS. They are the paradigm of the Chinese proverb, “Women hold up half the sky.” Throughout the past few weeks in Hubli as part of the Frontline SMS team that works jointly with NGOs assisting female sex worker and HIV/AIDS communities, I have seen countless examples of women holding up the sky. Peer educators (HIV positive sex workers) share their knowledge about prophylactics with fellow sex workers in the midst of stigma and discrimination. Female outreach workers, in their attempts to provide access to HIV/AIDS testing and anti retroviral treatment to female sex workers, face incessant gossip. Unfazed, these women persist in their duties of helping vulnerable women in the sex trade live a dignified life. In the largest democracy, these women live with limited freedom, disparaged in the home, workplace or streets. The initiation into sex trade varies with each individual with cases ranging from deception to limited or no alternative economic opportunities. The aftermath, however, is common; the women are mired in controversy and discrimination.

The human trafficking/sex trade is a clandestine operation, eclipsed by the bedlam of society, but these weeks have shown us the vulnerabilities, the oppression, and the strength and courage of these women in facing discrimination.

Combating stigma and discrimination is a gradual path, but we can start by helping women recognize their potential and increasing awareness in the community. By fixing technical issues, employing an effective data collection system, and expanding the project, my team and I aim to empower more women through SMS technology to help them realize that they can hold up the sky.

Village Foster Mothers, Sex Workers, and Orphans

Outreach Workers and Peer Educators


Wednesday, June 16, 2010

Navigating the Monsoons

This is a short video that we compiled that documents our trip to BCT. Enjoy!

Tuesday, June 15, 2010

Journey to BCT

After learning about the Deshpande Foundation and its work in Hubli-Dharwad during orientation, I was even more eager to get started on our project and to begin contributing to the socially-conscious ecosystem that the Deshpande Foundation has been building in the Sandbox region. After a morning group meeting, Jyoti, Tisa, and I, along with the Mobilizing Health team (Breanna, Ken, and Rolf), set off to meet with BCT at their office in Dharwad. With only an address and no clear directions about how to get there, we jumped on a crowded public bus towards the Dharwad bus stand. The 45 minute ride was filled with the typical chaos of Indian streets: pushy riders fighting for available seats, the bus conductor yelling out each stop, and constant honking by the bus driver and every other passing vehicle.

The rain came early today and by the time we reached the bus stand, it was pouring. Jumping over muddy puddles while avoiding auto ricksaws and motorbikes, we finally made it to the city bus stand to catch our connecting bus. We were told to meet the BCT staff at MG Bank. Once we arrived at the bank, we realized it was the headquarters for the Karnataka branch of Grameen Bank!

We waited for a while to meet our host, but no one came. Eager to get to the meeting, we decided tot take the initiative and find the office ourselves. We asked around for directions and every local seemed to have contradicting directions for us. BCT told us that their office was near Ishvyar Temple, but when we found the temple, it was completely surrounded by a residential neighborhood. We flagged down a local resident and he kindly offered to drive Rolf around to find the office and then come back for the rest of us. While we waited for Rolf, Jyoti and Breanna took shelter from the rain in the temple, and Ken, Tisa, and I wandered aimlessly up and down the street.

Luckily, a BCT truck spotted us and gave us a ride to the office. Finally! Although the BCT office is only about an hour car ride from BVB, it took us 4 hours to get there. Everything in India seems to take just a bit longer that expected... Nonetheless, the meeting with BCT was extremely productive. Venkatesh, the Regional Manager from KHPT who works closely with BCT, carefully explained the current status of the FrontlineSMS program that was initiated by last summer's Global Impact team and highlighted some of the challenges. We also got to meet the Peer Educators and Outreach Workers currently using the FrontlineSMS technology. We were given such a warm welcome! Ken and Rolf were even photographed and asked for autographs like celebrities. Despite all the rain and confusion that delayed our meeting, we left BCT with
big smiles.

Sunday, June 13, 2010


It has been about four days since I arrived in Hubli and I am very excited to begin my project! We had an amazing orientation put on by the Deshpande Sandbox fellows where we were able to visit many local NGOs in the Hubli-Dharwad region. One of my favorite NGOs that we visited was the Karnataka Health Promotion Trust (KHPT) which focuses its efforts on the HIV/AIDS communities in Karnataka. This is one of the NGOs that my group will be working with during our two month stay. The site visit was very intimate, we were able to speak with many people from the community who were affected/infected by HIV/AIDS which included sex workers, children, and foster parents. The gathering took place under a tree in one of the villages and everyone in the community was so warm and willing to speak with us. Some of the women even brought henna so they could draw designs on our hands! The women and children were truly inspiring and I can't wait to begin working with this community.