I am very drawn by my desire to understand human experiences of health and disease. So far, this quest has allowed me to interact with different levels of health education and interventions. All of which have challenged and expanded the very core of my formal education. These experiences spanning North America to parts of the Asia have allowed me to appreciate that “disease” does not exist in a vacuum but instead is shaped by both society and policy. More than anything, these encounters let me witness the remarkable resilience and coping strategies of those in the face of profound structural inequalities.
Perhaps nowhere has the grassroots movement expanded my knowledge about public health and the players in the system more than in the rural communities of India, a health system that I have been intermittently working and exploring since the summer of 2015. The following are narratives drawn from my encounters with community health workers, auxiliary nurses, and local actors and their struggles, successes, and joys that they experience in their everyday lives.
June 8th, 2015: The Story of Tackling Stigma – Singampunari, Tamil Nadu
During the summer of 2015, I volunteered in a primary health care (PHC) hospital located in Singampurnari, a village in Tamil Nadu where my grandmother grew up. I had settled into the routine of registering patients and testing blood samples when I met Harsha. The auxiliary nurse, Lakshmi*, explained to me that Harsha’s hesitation to get her symptoms treated had caused her irreparable damage: infertility. Like Harsha, most individuals who had sexually transmitted diseases (STDs) before marriage faced pervasive stigma. To avoid this stigma attached to open discussion about sexual health, women in India are often too shy or embarrassed to share discoveries of abnormalities or symptoms. They hope that their problem subsides on its own instead of trying to visit a physician. It was because of this, I was immediately inspired by how Lakshmi listened to Harsha’s concerns and responded to the anxiety caused by her disease in simple terms. By discussing the commonality of STDs in the area and sharing her own story of adopting a baby, she moved beyond thinking of Harsha as a set of symptoms. This also allowed Harsha to come to terms of her own situation and made her think about options that existed beyond her visit that day. The social nature of the STD stigma and Lakshmi compassionate care impacted how Harsha’s disease was understood and treated. Lakshmi humanized the interaction and provided Harsha a space to talk about her condition in a way that she wouldn’t find elsewhere. The nurse at the PHC was fundamental in helping Harsha process the information that she had come into that day at the hospital. Lakshmi helped break the silence.
October 17th, 2017: The Story of the Traditional vs Modern – Kotapathy, Pillur Region
Fast-forwarding two years, I find myself shadowing Preeta*, a Keystone community health worker, as she completes her rounds in her region. It was the initial steps of the project and I was there to look for the gaps that my project could potentially fill in the next eight months. Our goal for the workday was to visit Kothapathy, a village in the Pillur region that we set out on a 5km trek over rough terrain to reach. On the way, Preeta mentions that the road is spotted with wildlife, adding to the danger of her and her community members. In Kothapathy, we’re meeting with a mother and her son, both of whom have been experiencing mental health symptoms. When we reach the village, past the women catching water and the boys passing time, we’re greeted by the woman and her son. The woman knows Preeta and knows exactly what information needs to conveyed about the mental status of her son. The mother was no stranger to these visits. “He’s off his medication again. Always running off into the forest and sometimes he doesn’t come back for a week or two at a time. I can’t get him to go to the hospital.” I silently observed Preeta maneuver the situation. The mom clearly trusted her in helping find a solution. “I know you’ve been taking him to see a traditional healer but there might be some symptoms that can be helped by visiting a hospital — would you want to work together to find someone to take him to a hospital.” The mother visibly seemed at ease having Preeta guide her through the options. Preeta helped create a better picture of the healthcare options that existed. Her locality and the commitment that she showed to her community helped build lines of trust. Before my project had begun, Preeta had already started strengthening the project’s goal of becoming a vehicle of advocacy, support, and education. With Preeta’s knowledge of the local health infrastructure and her growing knowledge of how to identify and prevent diseases from going undiagnosed, it felt like we were taking a step towards decentralizing healthcare. She was the reason that health prevention and education would reach the last mile.
Jan 19th, 2018: The Story of a Job Greater Than Themselves – Jamshedphur, Jharkhand
With AIF’s support, a group of five fellows were able to visit the ongoing Maternal and Newborn Survival Initiative (MANSI), which seeks to reduce maternal and infant mortality with a concentrated approach in one of the poorest districts in Jharkhand, India. The MANSI conference arranged household visits that the Sahiyas from the project looked after. “Sahiya” means helper and in each of these villages the Sahiya helps teach the women about the pregnancies as well as provide health check-ups for both the pregnant woman and her child. When I visited these villages, I observed how confidently the Sahiyas would pass on knowledge about pertinent topics such as anemia, nutrition, and signs of high-risk pregnancies. It was a special opportunity to watch how the Sahiyas balanced their approach between traditional beliefs about pregnancies and encouraged new knowledge that would help the women in the communities take control of their own bodies. “Sometimes, you have to pick your battles with health-related behaviours, ” a Sahiya shared. “If they are still practicing a local belief about pregnancy but it doesn’t harm the child or the mother, why change it?”
By the end of our visits, it became very clear that the Sahiyas have become a respected and valued part of each community and helped foster hope of newborn survival. The Sahiya community also highlighted the benefits of giving women the opportunity to create friendships and communities that modeled empathy, collaboration, and the generosity of listening and learning. One benefit being that they now served as strong role models in their communities. And the other being that they demanded positive health outcomes and played a role in helping mothers achieve them. The Sahiyas were a reminder of how to take on a job that was greater than themselves.
So, although these stories of health workers took place in different parts of the country, the resounding question that I keep having to ask myself is what to do when health and well being are intimately tied to socioeconomic, cultural, and infrastructural factors as they are to biomedical ones?
The stories of these health workers call us to take a humble approach to healing and care, one that combines a deep awareness of local realities and a constant effort to link public health action to locally defined need and priorities. Enriching my own knowledge about the health system in India spanning the past three years constantly reminds me that when our own knowledge, tools, and skills are lacking in their power to heal and fail to address underlying determinants of health that we, as social sector practitioners, have a great deal to learn from local actors and realities. The onus is on us to proceed through open dialogue and through active and genuine engagement and collaboration with the very community we hope to help.
My interactions with these community health workers has inspired me to swim upstream the health systems river, alongside nurses and other health workers, in more authentic partnership.