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.

Friday, July 17, 2009

Good Intentions Gone Efficient

Sitting in the front seat of a white government issued SUV, I felt sick to my stomach. Two of my teammates sat behind me joking with Dr. H, a well connected health official, as we rumbled between two South Indian villages. It felt like something out of a movie – foreigners wearing sunglasses arriving to a host of curious looks. I tried hard to put aside the misgivings I had for the time being. At each stop we were graciously accommodated - bodies whirling around us preparing tea as doctors dropped everything to answer our questions. Yet, it felt far from traditional Indian hospitality.

Maybe it was the looks in their eyes, or the urgency with which they moved, but it quickly became clear that the staff was afraid of something. Behind us our host barked orders, apparently using our visit as an opportunity for an inspection of the facility. I bit my tongue as the janitor hung his head- presumably being told in Kannada that the floor was not clean enough. Eventually we received news that a baby had been delivered earlier that morning and Dr. H shepherded us into a makeshift recovery room.

The new mother laid with her child as her family watched us from neighboring beds. Dr. H paced around asking questions and noting the quality of the room. Our eyes drifted to the squirming hours old baby. My heart sank when our curiosity was noted and we were prompted to touch the newborn. Here we were on what should be one of the new family’s proudest and happiest days – strangers barging in and being asked to treat their child like a hands-on experiment. My discomfort was visible, but our host insisted. I eventually touched the poor thing’s head and hustled out of the room. Dr. H teased me and we moved on with our day.

I couldn’t put the experience behind me. Images of the day kept flashing through my head- the vacant looks on the faces of patients in the crowded waiting room as the doctor left his post to meet us, the embarrassment of another clinic’s staff when Dr. H pointed out a error in their tabulation of the month’s deliveries, and my silence throughout the whole ordeal. I had come to India to help people, but had I really spent the day doing the opposite?

That feeling stuck with me for longer than I expected. While the three of us had spent the day with Dr. H, one of our team members stayed back in Hubli to troubleshoot our technology and do other some other work. Over the past week our team had researched something called Samastha, a HIV/AIDS program funded by USAID and an organization called KHPT that our NGO was responsible for implementing in Dharwad District. Eager to gain a perspective on the finer details and goals of the program we decided to email two contacts listed on a PDF document we had found online. The responsibility of writing the email fell to Jon as we toured the clinics.

The email read:

Hi Ms. Shankar and Mr. Gurnani,

My name is Jonathan Goldford and I am part of a team from the University of Southern California. As a group of four we are working with the Desphande Foundation to improve the efficiency and effectiveness of the Samastha project at BCT in Dharwad. To do this, we are implementing a simple SMS-based healthcare communications network using software called FrontlineSMS.

Once we have completed the project we hope to be able to scale it to each of the other NGO's in the Samastha project. It would be great if we could set up a phone call with you to discuss our project and the potential to work with the other NGOs in the future. Thank you and I look forward to hearing from you both.

As we later found out, the message was a textbook error for several reasons. First, we had unintentionally reached out to two very high up officials. Despite the relative ease of obtaining their contact information we were later told, “People don’t just email them.” The best description of communication in India I have heard since is that in this country things are “well stratified, well channelized”. The status of the two individuals made the informal tone and greeting of “Hi” unacceptable. Worst of all, we had used the terms “efficiency and effectiveness” – two words thrown around American business communication that had been misunderstood in this instance to mean we were calling their program inefficient and ineffective.

The message would later prove to be a bold, but brash gesture. The introduction we were trying to make for ourselves was independently made by a Deshpande Foundation program officer the very next day. When he received a call later that afternoon he assumed it was in response to his request for a meeting, but instead it was to admonish him for our communication. It quickly became clear that we had made a mistake that jeopardized not only our project, but our relationships with the Foundation and our partner NGO as well.

The next day the possible consequences were presented as such by our mentor, Rahul Brown:

• You will be spending the remainder of your vacation in America
• You will be reassigned to another project
• You may be able to salvage your project with another NGO, but you will need to work 12 hours a day, 7 days a week.

Oh, and we were told that it was more than likely that our partner NGO would lose its funding from the organization we had contacted. Our emotions at the time were many – disbelief that a harmless email could cause such damage, frustration that we ourselves were unable to do anything to rectify our actions (we were put on “communications lockdown” and referred to as “grounded”), and fear that the friendly staff we had grown to know would be out of the job.

Yet, today our project continues. We enjoy a healthy relationship with administrators at KHPT (the organization we emailed). In fact, we met with one administrator today to make an introduction to EXPAND our project in the future and another requested a PowerPoint of ours yesterday to take to a meeting in Bangalore. So how did we get from the dire straits described above to where we are now? The short answer is, I don’t know. The apologies we showered on the affected parties were laughed off, administrators whose relationships we had supposedly strained behaved like old friends, and after a long lay-off our project emerged stronger with important people supporting it. The full story involving exactly who reacted and in what way, and other critical details have not been shared with us and likely never will.

I still think about the incident amidst our now demanding project's activities. New information emerges every day and with it new theories – for instance, that our affiliation with a US university combined with the American government’s funding had led some to believe we were contracted to evaluate their program without their knowledge or consent. Most read the text of the email and can’t believe our stories – a high-up staff member at Deshpande even told me recently that he thought it was a good email. Most often I think about the ubiquitous Samastha program banners. In small print beneath the USAID logo it says, “From the American People.” Wasn’t that our intention as well? Where had I gone wrong? Where had we all gone wrong?

In the end, I've given up explanations in favor of something Gandhi says in his autobiography:

“Numerous examples have convinced me that God ultimately saves him whose motive is pure.”

- Dan