“A More Onerous Citizenship”: Exploring Health, Community, and Sickness in Rural India
By Emmanuel Greenberg ‘15, Jagori Grameen (2015-2017)
Susan Sontag writes that all people hold dual citizenship, “in the kingdom of the well and in the kingdom of the sick.” For the first time in my life I have been able to use my passport and enter into the kingdom of the sick, if only as a visitor. I spend my weekends volunteering at a local health clinic called Nishtha. The building is made of mud and the Austrian doctor who runs the clinic has dedicated her life to providing affordable, holistic remedies to illness in the community. The most common ailments are anemia, prolapse of the uterus, stomach and back pain, asthma, and injuries from vehicle accidents. In most cases, the diagnosis and treatment is clear, but every so often, there is a case that is unforgettable. I meet a person or hear a story that changes the way I think of my new home.
Since I am only a volunteer with no formal medical training, I am often tasked with simple duties: blood pressure, pulse, hemoglobin tests, acupuncture assistance, and general comfort for the patients. In the beginning I would spend whole days taking vital signs of patients, struggling to converse with them in Hindi. Now, after almost 9 months of work, I am beginning to see familiar faces and becoming more intimate with the patients. As I roll back the sleeves of an aged laborer, I ask about his kids and the projects that he is working on in the village. For the diverse cast of characters that comprise the clergy—the monks, the babas, the sadhus—I ask about the happenings in their temples or where they plan to go next. For only the brief moments that I spend with each patient, the time feels sacred.
The far corners of society, the ones stricken with illness and poverty, are often invisible to travelers. Working at the clinic has illuminated some of these spaces, brought them into the light and forced me to engage with the people that inhabit them. The area that I live in is comparatively affluent compared to the rest of India. Literacy rates are high and it’s rare to see a person without a roof over their head. At the clinic, I see people who come from the spaces that I don’t see in my daily life. The remind me of the layers of the community. A young Nepali woman with chronic obstructive pulmonary disorder (COPD) walks from the slate mines in the mountains to find relief from her halted breath. I sit with her as she holds her newborn baby and she tells me about her life in the mountains.
I have been invited to people’s home with the doctor to deliver bedside care. In one instance, we walked to visit an elderly woman with tuberculosis. Sitting by her bedside and taking her blood pressure felt useless as her sickness seemed irreversible, but after more visits and continued care, she is now out and about in the village.
One patient comes stricken with a bad case of psoriasis—a skin disease characterized by thickened patches of red, inflamed skin, covered by silvery scales. With regular health check-ups and more resources, the disease is very manageable, but as I look at the man sitting in front of me, I see that the disease has almost fully covered his long, gracile limbs. His skin has become so cracked and brittle that as he stretches out his fingers to present his upturned hand, a fresh stream of blood surfaces. I think of the Sundarbans, where the Ganges flow into the Bay of Bengal, as the dried and brittle landscape has be formed and reformed by powerful growth of organic material.
I am from Bihar, says the psoriatic man, his hands tucked inside his shirt, “I am here to work at the new concrete plant.”
In my head, I quickly walk myself up and down the two main roads in the village. I stop affront the concrete plant. It appears as a crisp image in my head. I think of the large clouds of dust encircling the plant as soot-covered bodies bustle around in the hot sun. I have never paid much attention to that place, never fully considered the human beings that worked there.
Are you married? the doctor asks.
No, he replies.
This is rare, the doctor turns to me, something must have happened.
The story goes like this. The man with psoriasis hit and killed a person and was convicted of vehicular homicide. He said it wasn’t his fault. The person had jumped unexpectedly in front of the car. He had spent more than twenty years in jail. His eyes swelled with tears. As one rolled down his cheek and onto the back of his hand, I saw the dry skin soak up the water in an instant.
This is when my skin became sick, he muttered.
Suddenly his illness stepped out of the darkness. He invited us into a space that he likely keeps buried deep inside himself. For me, at this moment, I do not think about his skin or his clothes, caked with dried concrete. Instead, I think about his life and the events that had led him to be sitting in front of us. Where is his family? Does he get to see them? What I initially perceived as a torn and hardened hand, thickened by the sharp vicissitudes of illness, suddenly became layers of red lines between islands of skin, revealing the many tributaries that the blood has flowed. The disease had made its mark on his body and written its own history in the process.
I do not write about the most marginalized people to represent them or to represent the place that I now live. I cannot do that. I only write about this because exposure to this part of the community has been the most challenging aspect of my experience here.
As I attempt to uncover the structures of power that create the world I see around me, I am constantly reminded of the same processes that I witness in the United States. The biggest difference is that these power relationships are stripped bare. While living in a new place a heightened sense of awareness sets in and often sheds light on things that are easily overlooked. Such things can be equally inspiring and disheartening. I am more often awed by the richness of the culture and the philosophies of life that I encounter than I am by the marginalization of the ill population—but still, these interactions have hugely influenced the way I see my new home.
Development—in every sense of the word—is central to the identity of this place. The rate of building is startling. Hotels, guesthouses and homestays are being erected on a regular basis to accommodate the huge influx of foreign tourists and Indians who want to escape the chaos of urban life. In the short time since I have arrived the physical appearance of the village has dramatically changed. Despite the flow of money and capital, there seems to be winners and losers. Imported laborers from Bihar suffer from all the problems that come from displacement: low wages, social alienation, familial estrangement. I only saw this after interacting with the psoriatic patient. The affluence and lack thereof occupy different spaces in society, but often more overlapping than I can see on my own. It is only through the engagement with all kinds of people that I can begin to understand this place in a more complete way.
While both the intensity of sickness and intimacy with patients at the clinic have transformed how I think about illness and the community, assisting with outreach clinics has showed me how people in this area think about health more broadly. We pile in—five or six of us, and head for remote villages to talk about diet and hygiene and give basic check-ups to rural women. Lately, as the summer months have commenced and began to scorch the land, the sun relentlessly beating down before the monsoon comes to wash everything away, the trips have been hot and exhausting.
We arrive in a small, remote village. The scene is breathtaking: the first layer of the Himalayas sets the backdrop behind rolling hills punctured delicately with vernacular architecture. Women bustle about, washing clothes, preparing food, and working in the fields. We unload the jeep: a scale, a canvas duffle bag of medicine, enlarged plastic organs and mouths to demonstrate biological systems, hemoglobin testing equipment, and the most popular among the women, the stethoscope and sphygmomanometer.
The outreach clinics often take me to places with unbelievable natural beauty. Pictured above is a small village about an hour from where I live.
By this time, word has travelled that a doctor is present. Health tests and medicines will be distributed. What began as a small group of seated women soon swells to a sea of colors. Vibrant pink, blue, yellow, and orange saris swirl into a singular composition accompanied by the slight jingle of bangles. An elder women comes first. Her name is Shakuntala—the name of my grandmother. After delicately strapping the inflatable cuff around her bicep, I pump the sphygmomanometer. As the pressure increases, the surrounding noise drowns out completely. Now all I hear is the slow beat of her heart.
There are a whole different set of lessons to be learned from helping with the outreach clinics. I get a sense of the diverse and complicated psychologies of health. For the hundreds of women I have encountered, almost all of them are primarily concerned with numbers. By considering their blood pressure, their weight, and their hemoglobin level, they seem to compose some abstract understanding that represents the entirety of their health. But no, the doctors try so hard to tell them, these are only indicators, rough approximations of your health at best. Instead of fixating on the numbers without any deeper understanding, they say, you should focus on practicing the basics of healthy living: nutrition, sleep, posture, and maintaining a clean natural environment. But still, it is a struggle. The women want quick relief for their high blood pressure and back pain. I try and understand, but it is this lack of understanding that makes me the outsider.
Dr. Kusum, one of the doctors at Nishtha and one of the hardest working people I have ever met, talks about health issues that rural Himachali women face (left) and demonstrates exercises to alleviate back pain (right). Day in day out, for almost 30 years, she has prioritized knowledge over medication.
For me, outside of the context of Nishtha, there is no clear platform to engage with people about their health. Alone and travelling through the south of India, I encountered images of sickness and death that I had never seen before. The illness always felt distant and those who bared its suffering were always an arm’s length away. I watched the images move by like a slideshow: a small man sitting beside his pedal rickshaw, clutching a protruding tumor on his neck while also looking for work; a slender teenage boy with missing legs and a makeshift wheelchair; a glimpse of a child, his body frail and malnourished panhandling amongst heavy traffic in the oppressive heat; a corpse engulfed in flames on the banks of the Ganges. I wonder about the people and the bodies they inhabit, the history of their illness, the ebb and flow of their lives. I also wonder the difficulties they face and where they go to seek medical attention for their pain.
If Gandhi famously stated that poverty is the worst form of violence, then it was Ta-Nehisi Coates who reminds us of the connection between language, knowledge and violence on the body. “You must always remember” he states, “that the sociology, the history, the economics, the graphs, the charts, the regressions all land, with great violence, upon the body.”[i] While Coates writes specifically of the Black experience in the United States, his words seem relevant to the world I see around me in India. I feel the stream of educated people, including myself, come to this place to impose our statistics, our theories, our language, and ultimately our rationale, on the condition of poverty. But the times when poverty is most immediate, when the result of its violence causes physical pain and suffering on a person sitting right in front of you, those billions of gallons of ink that have been spilled in understanding its causes seem strangely harmful.
I travelled throughout India by train and bus. The long journeys were exhausting, but there were also unforgettable moments. Here a young father naps with his son on the train, catching relief from the high heat of central India.
My interest in coming to India was to move away from academic work, to turn to direct experience. But now I feel that in order to fully understand my experiences, I need to translate them back into language. What’s confusing, what I cannot seem to fully understand about myself, is my tendency to dive deeper into that bucket of ink and seek answers from academies and institutions about the cause of such suffering. The same ones that I so desperately criticized as imperialistic. Perhaps it is the combination of both experiencing sickness in the clinic and also spending time alone, away from friends, family and familiarity, that has caused me to spend much of my free time exploring literature—both scientific and narrative—that concerns issues of sickness and death. I retreat to my house, away from the community, and fill my notebooks with opinions, stories, and theories as a way to try and understand what’s going on outside.
There are 14 months left in my Shansi fellowship. The basics of living and the pace of life have become familiar to me, but the substance of my experience—personal relationships, my work at two NGOs, the reality of being alone—these are things that are always changing. There is dynamism in every conversation, every encounter. Even those languid moments by myself.
A fundamental concept in calculus is the first derivative, simply stated as the rate at which something changes with respect to a function. This is not only a mathematical concept—it is also a powerful metaphor for how humans seek to understand change and growth more generally. The subject of such change can be anything. Development, illness, one’s own self. Working in the clinic has forced me to not only look at the rate things changing but the mechanics of such changes. To ask myself what exactly is changing, with respect to what, and how fast? In this way, entering the kingdom of the sick has caused me to confront myself.
“Illness” Sontag declares “is the night side of life, a more onerous citizenship.” A short list of all my forms of citizenship—American, educated, healthy—can make it feel like entering the clinic is to engage with the citizens of the other world, the ones who had their more privileged passports stripped from them without consent. What I am doing here is not charity or even particularly helpful. My presence in the clinic likely has little impact on their lives, their illness, or their suffering. But still, every week I look forward to sitting with the patients. Not because the air is macabre, but because inside the modest mud building at the top of the village sit the people that occupy all my thoughts, those whom I look forward to seeing, and those who help me rebuild my vision of the world in a more complete way.
[i] Coates, Ta-Nehisi. Between the World and Me. Melbourne, Victoria: Text Publishing Company, 2015. 10.
[1] Sontag, Susan. Illness as Metaphor. London: Allen Lane, 1979.
[1] Coates, Ta-Nehisi. Between the World and Me. Melbourne, Victoria: Text Publishing Company, 2015. 10.