Health Disparities in Rural India

Other tourist often say, getting sick in India is part of the experience of being here. Although thankfully, I have not suffered from more than a minor cold so far, even in this situation I realized that when your health is compromised you feel vulnerable, lonely, scared and dependent on others. I always thought about these feelings in regards to myself and how I would cope with feeling marginalized while in a foreign country with health issues. It never occurred to me that citizens of India, although they are not foreigners, have these same emotions when experiencing health problems which are often magnified due to their social status, income and caste.

My first exposure to health issues in India was this week when I briefly visited a government hospital. This visit was completely spontaneous as I went to Pune this weekend to visit my friend Smita and then go to the field with her the following day. On our way to the bus station she asked me, “are you interested in seeing a government hospital?” With a bit of apprehension due to the fact that I was fully aware that it would be a really difficult yet important experience, I said yes and before I knew it we were in the waiting room. As we walked in, the first thing I noticed was that the hospital closely resembled a train station, with people camped out and waiting in long lines at the slight chance that they might be seen. The only thing that undisguised it as a hospital was the crowds of people with cloth wrapped around their injuries, burn victims, and children/elderly lying curled up in a corner, each with a plea of desperation in their eyes.
As we walked through, I was so overwhelmed that I was not even able to digest everything I was seeing. I could not process the pain, both physically and emotionally. Almost simultaneously, a slight wave of panic came over me thinking about the possible diseases floating around in the air. Uncertain of whether my quick request to leave the hospital was a self-centered fear of my own health being at risk, or to avoid seeing anymore poor, sick people that my senses could not handle, we snuck out one of the side doors. As we left, although filled with sadness, I breathed a sigh of relief until I saw that the crowds continued on to the outside of the hospital and even filled the sidewalks surrounding the hospital. Here, I saw similar sights as those in the waiting area except for there was even more sorrow filled in these people’s existence because they had either been discharged from the hospital with nowhere to go, denied services or given up the hope of getting care. Not able to stop thinking of all the people I saw during my two minute walk through the hospital, me and Smita boarded the bus for our long journey to the village.

Upon arrival, the familiar air of the village and presence of our host family was so comforting… a relief from the traveling and poverty of the city. As we walked into the home of our host family we sensed an emptiness and asked, “Where is everyone?” Our host mom explained that the family had to accompany the young bride of their nephew, Jaya, to the hospital because she lost her baby. Surprised and confused that she was even pregnant as I had not known this in my prior visit, I began to ask questions (as I often do). I quickly learned that medical issues, particularly in regards to women, are very taboo and often not up for discussion.

Me and my friend Smita started out by, making our rounds to the families in the village, asking them questions about their participation in microfinance while in between discussing our aimless efforts and helplessly wondering what our purpose was in the village. On our walks, we would have deep discussions about our passions in life, how we are viewed in this rural community and the meaning of true empowerment and grassroots community organizing. Through these conversations, I came to see the commitment that Smita has to social change and her compassion for the world. It was within her that I started to believe that our future holds some hope and better things for those who are suffering. Through our talks, I also realized that often connections and deep sharing goes beyond language communication and comes down to people’s emotions and shared feelings and experiences. The pain and joy we share together in the village day in and day out is something that has made me feel connected and bonded to her and the community in a very unique way. The way in which we capitalize on each other’s strengths and use her identity as an insider and my identity as an outsider to both of our advantage is an example of a true partnership in problem solving. Most importantly, I will be forever indebted to her for opening up a world to me and giving me the gift of experiencing rural India. What I have gained from my time in the village would be impossible without her.

After our rounds we headed back to our house, both frustrated about our purpose in the community. We saw that Jaya had returned from the hospital and rushed in to see how she was doing. As we sat at the corner of her bed, I noticed an extreme sense of sadness and sorrow in her eyes that she was desperately trying to cover up. Being released from the hospital less than an hour ago, she sat up in bed in a beautiful pink saree, her hair perfectly in place but unable to hide her pain. We asked her why she didn’t change into something more comfortable and she said “no I can’t, people will think badly.” Seeing the sadness in her eyes and through some probing questions asked in a slight whisper so the ten in-laws around us would not hear our conversation, we found out a bit about Jaya’s story.

At age 16 her parents arranged her marriage. Although she pleaded with them to wait until she was at least 18 so she could finish her basic education, being from a poor family, her parents could not afford the risk of passing up an eligible groom and quickly made the decision for her to marry. In her parent’s eyes, they were doing the best thing for their daughter in order to settle her in a good home and guarantee her a financially secure future with a decent family. After meeting her future husband only once very briefly in her parent’s home, Jaya was married and moved to a village 300 kilometers away to live with her new husband, his parents and extended family to take on her new role. Prior to this, Jaya had never even left her parents home other than to go to school and back. She had never spent a day apart from her parents or her siblings.
With the help of Smita (my co-worker) I had the opportunity to ask her about this period of time around her marriage. She shared with us that she was very anxious and afraid about not being able to fulfill her duties as a wife as well as being so far away from her family. Jaya admittedly told us that she had no idea what marriage meant or anything about reproduction. No one explained this to her yet at 16, married her off assuming that she would figure everything out, the same way that women have for many previous generations.

Last month, Jaya found out she was three months pregnant and had no idea what precautions to take while being pregnant, how to care for her body or the process of gestation. When she woke up in the morning with severe pain while simultaneously being extremely embarrassed due to a lack of privacy as her in-laws were intimately aware of her medical issues, they loaded up in the back of a truck and headed to a local hospital in the closest town to the village (over 10 kilometers away). Jaya described the extreme pain that she endured and her fears about not knowing what was going on with her body.

Upon arrival at the hospital, with little explanation, her baby was aborted. At the hospital the family lied and told the doctors she was 20 as opposed to 17 since 18 is technically the legal marrying age in India (although this is rarely abided by). I asked her several times about the specifics of the complications and she said she didn’t know and nothing was explained to her by the doctors. She handed me some papers with brief notes scribbled in English that even I could not make out. I then asked her husband and he was also confused about what exactly had happened but continued on to say “I told her to take better care of herself and now look what happened.” Although he was not intentionally being accusatory and I could sense a genuine feeling of caring and sadness, he was also ignorant about the process of pregnancy and the only way he could understand it was by blaming his wife’s negligence as the cause. In effect, this placed the guilt of losing the baby on Jaya in addition to the grief and pain (both physical and emotional) she was already experiencing. We repeatedly explained to her that it is normal to miscarry your first baby and because she is so young and thin, her body could not handle carrying the baby to term.

I asked if she was given any instructions or medication and Jaya handed us two pill bottles, again with instructions written in English and said, “They gave these to me but I don’t know what they are for.” I read the packages, and told her I am not a doctor but recognized a name of some of the drugs and explained the purpose of the drug and how important it is for her to complete the package in order to avoid further complications. She agreed and stated that she was glad we had told her this or else she would not have done so because she did not understand what the medication was for. My co-worker Smita suggested that Jaya wait a little while before becoming pregnant again. Me and Smita encouraged her to resist the pressure from those around her to have a baby right away and prove her fertility (being infertile has a huge stigma attached to it in India and inability to produce children can often induce mistreatment from the husband and in-laws). She agreed but admitted that she did not know how to prevent another pregnancy. Smita, again in a low whisper explained everything to her and although she did not say much, a little smile would appear on her face from time to time indicating her appreciation for us being there and talking to her about her experience and hardships.

As I watched this interaction, my heart broke for this girl, not only for her loss but her feelings of loneliness and isolation. Thinking back to my last visit, I remembered how she had stroked my hand as she was dressing me in the saree and said to me in Marathi ‘doost?’ (friend?). At the time, I just saw her as one in the crowd of women, enthusiastic about seeing me dressed up in Indian clothing. Now considering her current circumstances, I realized that she was reaching out for comfort to someone who was outside of her world, and if not even that, for anyone at all. As I sat on the corner of her bed, I felt so helpless with language being a barrier between us, not being able to say the things I wanted to say to her. The only thing I could do was hold her hand and stroke it in the same way she had mine. As I did so I realized that I was so accustomed to solving the problem that just physically being there for someone has always been put on the backburner. Even in my role as a social worker, although I would listen to my clients, I would immediately jump to how to relieve the issue. In this moment, with the lack of resources or tools at my fingertips, I was forced to put by problem solving skills on hold and just be there for her, with my presence and show my caring without communication. Although this was not the solution to her pain, it taught me that sometimes finding a way to give people comfort through empathy and love can be extremely significant, even though they continue to experience the pain.

As our first day in the village came to an end, we rested with our host family and then woke up the next morning and set out on a 2 mile hike to a tribal village of indigenous Indians. Our task was to gather some information on the culture, life and history of the people of this tribal village as well as assess the interest in starting the self-help group movement in this community. As we entered the village we were greeted with a mix of kindness and suspicion as to the purpose of our visit. This reception was quite natural given the historical context of this population’s marginalization through land confiscation which has caused this community to be significantly more impoverished. Although these tribal villages continue to have a rich sense of culture and traditions that they have managed to hold on to for hundreds of years, they are struck with many social ills that have arisen in response to their history of oppression and exclusion in society.

As we were talking to the members of the community in an attempt to build some trust and rapport, we noticed one of the woman with a speech impediment and a deformity on the side of her face. As a result of Smita’s experience working in a cancer clinic she guessed that this woman may be a cancer survivor. As we were discussing her economic situation with her, Smita, with a lot of ease and kindness, asked her what happened to her face. She replied that she had several surgeries. Smita asked why and the woman responded and said, “Well I don’t know. I think they said it was cancel.” Then Smita clarified and asked, “cancer?” and she responded, “yes… I think that is it.”

With this information, we began asking her about her medical history and the care she is receiving. She informed us that she now has another tumor which was clearly visible in the corner of her eye and also has sharp pain and pressure in her head. She stated that she had not been to the doctor since she had her last cancerous tumor removed two years ago. As I listened to this woman (who we call Moshee meaning auntie) describe the progression of her illness, I once again felt so helpless, like there was absolutely nothing I could do for her. As we were attempting to better understand her medical conditions, she brought out a plastic bag full of papers and records from her doctor. As Moshee explained in Marathi what she had gone through, with difficulty speaking as a result of a tumor being removed from her mouth, and myself sitting among a heap of illegible medical documents, I decided that the only thing I could do for her was to was organize her paperwork. As we sat under a tree, I shifted through hundreds of papers to put them in chronological order to make sense of the progression of her illness while Smita made a call referring her to an oncology tumor board; this time we went into problem solving mode. Smita specifically described every step she needs to take in order to be seen by doctors at the tumor board, ironically at the same government hospital we had visited the day before. At this time, Moshee pulled out a heap of old medications as well as eye drops that she was given to take. As I looked through them I realized that all of them were expired as well as dirty and contaminated. We advised her to throw them all away and stop their use as they could be aggravating her situation if she is putting expired and unsanitary meditation in her eye.

The hour we spend with this woman, reviewing her medical information and drilling in again and again how important it is for her to get immediate care, although we did some problem solving, ultimately the importance of all of this was the time we took to communicate to her that her life mattered. When we first sat down with her, it was obvious that for so long she was treated as if her life was disposable and in turn she had internalized these feeling. She even said often, “well, I guess I will just die,” in which we responded, “Moshee, it doesn’t have to be that way.” Receiving inadequate treatment in the medical care system combined with her internal feelings of lowered self-worth had made her feel even less empowered and valuable as a person which translated into her negligence to seek proper care.

Though it is never certain, as we wrapped up our visit, I had a feeling that the mere fact that we cared about her and constantly told her that her health is in fact important, changed this woman’s outlook. She promised to attend the clinic that week and as we were leaving we both told her “we care about you and we want you to be healthy. You don’t have to live like this but it is up to you to do something about it.” A crooked smile appeared on her face and she said, “Ok, now I believe that is true.”

As we left the tribal village I replayed this woman’s story over and over in my head. I realized that although there are certain pains and feelings that are common in humanity, such as being ill, the expectations and values we put on our life is a product of how we are treated by others which transforms pain to impact people differently. This woman most likely has a very curable form of cancer; if it was myself or someone from the privileged world, it never would have gone as far as it did and we would demand to have the care we needed to get well because, we have been told, treated and come to believe that we deserve it. As a result of her history, treatment and perceived lowered value of her life, this woman has felt precisely opposite. Although, health is a human right unfortunately as I have found this week, it is one that is not upheld for much of the world’s population.

After another long journey back to the town I live in, I arrived to a quite, empty house-a rarity in India. Alone for one of the first times since I came here, everything that I had seen and been through that I had to hold in and could not express at the time just hit me like a ton of bricks and I couldn’t stop my tears. I cried for Jaya and the many young girls who live with fear and loneliness, I cried for the woman and the rest of the tribal community who have been convinced of the lowered worth of their life, and finally, I cried because I was aware in that moment that every one of these stories will be imprinted in my mind and will influence me for the rest of my life.