Topic: Environmental Determinants of Health Researchers: Kiran Sawant (PUKAR), Adriane Lesser (Harvard School of Public Health)Methods: In-depth semi-structured individual interviews (30), Focus Group Discussions (5)Population: Predominantly men, women, and youth of Kaula Bandar, with interviews in the registered slum of Dharavi for comparison. Preliminary Observations: An unregistered slum jutting out into the sea from Mumbai's eastern waterfront, Kaula Bandar has the distinction of being located on land belonging to the Bombay Port Trust. Because of this, Kaula Bandar does not receive the level of facilities and services provided to slums on Bombay Municipal Corporation land established before 2000. As a result, residents of Kaula Bandar face a unique set of challenges to their health and quality of life. In particular, this project has explored the environmental determinants of health operating in Kaula Bandar, with an emphasis on sanitation, hygiene, and water issues. Through interviews and focus group discussions, the researchers in this project have documented varied perspectives, perceptions, beliefs, and behaviors regarding these issues. The hope is that a better understanding of how residents of Kaula Bandar experience and react to their environment can inform recommendations for policy and action towards improved health in their community and others like it.
Living in India, perhaps particularly as a Westerner, your privacy, and the extent to which you may have taken it for granted, is something about which you become acutely aware. A closed door, a buckled bag or averted eye contact do nothing to stop interested bodies or eyes from following you. Living with a family of thirteen people, give or take a few on any given day, has made privacy one of my primary considerations, even though, unlike the rest of my family, I have my own room and bed.
But what does this mean for locals, those “used to” living a visible existence? What does it mean in terms of health and health care? One day we went to K- community, hoping to do an interview with A--, an active community leader, on the history of the area. He and his family had been living in the community nearly 20 years and as a garrulous and educated man fluent in Arabic, Persian, Urdu and Hindi, he is a perfect informant. Moreover, A-- is always very kind and cheerful, providing time and information and a cup of the “best chai in K--.” This day, however, we were greeted by A--’s wife with bad news: A-- had suffered a “paralytic attack” (presumably a stroke or transient ischemic attack) two nights before and was at one of the two nearby government hospitals. After finishing our work in K--, we went to see A-- in the hospital. We stopped near the main gate, where a vendor transferred the contents of three tender coconuts into the plastic bags permitted for food deliveries into the hospital. We went to one floor and asked to see A-- and were told that he was on another floor. There were no questions asked about our relation to A-- or mention of specific visiting hours. Despite this novelty, during all of this, I was mostly struck by what you rarely hear about government hospitals in India: it seemed to be clean and infrastructurally sound. Granted, there were large families sitting in circles on the floor and people catching a nap in odd places but it certainly wasn’t as if the building was about to collapse on us. Similarly, when we got to the correct ward, it was well-lit and clean. It was, nevertheless, still an open ward with 100 beds. Everyone watched as we approached A--‘s bed and tried to gently wake him up. Many watched or listened, not even trying to feign attention elsewhere, as he explained how he had only recently regained movement in his right hand and right leg. His speech was only coming back slowly. He knew very little about his current status except for the small experiments he could carry out with his own body. He showed us his test reports, sitting in an envelope on the small stand next to his bed, available to anyone while he was sleeping. The doctor had told him nothing about the results of these tests – and would ultimately send A-- home without explaining them. I looked at the reports and was able to explain a small amount about why they had been taken and what the results seemed to say – mostly that he was OK but had some biomarkers indicative of future cardiovascular problems. A—had also had been submitted to a brain MRI. The large envelope holding the film was tucked under his mattress. I knew that I couldn’t interpret the MRI, so I didn’t even bother to look at that. In the end, that too would hold relatively benign news but if it hadn’t, would that too have been given in front of all 100 patients and half again as many families? Although no bad news was delivered in the hospital, at the time of this writing, A—has still not recovered the ability to read and write. This is frustrating for anyone, to be sure, but as a community leader and one of the few literate adults in the area, this is particularly devastating.
Another man with whom we spoke, G--, rail thin and 72 years old, had also suffered from a ‘paralytic attack.’ He spent most of our time together folded into tight thirds in a squat, grinning broadly when a question struck him as funny or incisive. Physically, he was recovering far slower than A—, despite three months having passed since his attack. His attack happened while he was visiting his native village and he remembers nothing until waking up in a government hospital in Bombay. Although he was surrounded by people in the hospital, he described his time there as palpably impersonal. The doctor never asked him any questions, never touched him to see how he was doing or simply to offer some comfort to a man who had awoken to find half of his body no longer under his command. At the time we made visits to G--, over the course of nearly two months, his left hand was useless and he couldn’t precisely remember how to place his left food when he walked. He could take a sizeable breakfast but usually vomited some of it while another bit felt lodged in his throat, limiting his food intake for the rest of the day to rice paste and chai. He had dropped 15 to 20 kilos in three months. The family, with a maximum daily income of Rs 100, could not afford a high-protein or even high-calorie drink to help him keep up his weight. The once independent G—could no longer dress, bathe or go to the bathroom by himself. Surely it is a difficult indignity for any man to have to ask his wife or son to help him with these tasks. But when your bathing and toilet activities take place in the wide open, a new level of dehumanization comes into play. One of the times we met with G--, his wife was gone in their village near Lucknow, where the couple hoped to complete a house and move one day. When pressed on why he didn’t go, he explained that because their house was not yet finished, they stayed with relatives in the village. With no opportunity for privacy, G—could think of no way to keep from everyone that he needed his wife’s help for the toilet and, not wanting that to be public knowledge in a place where everything is public, he opted not to travel with his wife and see his relatives.
There is no end to the challenges that a stroke, or any illness, inflicts on a human being. These are in many ways multiplied by living in a community like K--, although there are certainly benefits to being surrounded by one’s family. In all the health stories that come out of communities like this, usually intended to invoke a sense of horror or to wrench the heart, what is often overlooked are the small doses of suffering that one must swallow every day, the small indignities that chip away at the capabilities that make us fully human. These are only two glimpses into lives that are much deeper than their illnesses and much broader than what can be covered in several hours of talking or a couple paragraphs of writing. Nevertheless, they are two true stories of human suffering that need to be heard, felt and ultimately addressed.
- Heather (Harvard School Of Public Health)
There is one drinking water facility in Kaula Bandar but interesting thing is that there is no tap for get water.
We are doing a project called ‘Healthy cities wealthy cities’ in Kaula Bandar. When we ask questions related to water, health and productivity, we get same experience most of the time and that experience is, when we ask questions on water and health, if interviewee is a man then he tells us that, ask these questions to my wife because she looks in all these matters and really she can give answer of our each and every questions those related to water, family health, children, education but she cannot give proper answer about her husband’s job, his monthly income and productivity. Only men can give proper answer of their jobs, income and productivities but they cannot give answers of their family matters. In that situation the question arise is that, Does gender affect on our data? We have a same experience when we were doing a project, ‘Youth and Governance’. In that project we were collecting data on two subjects first one is ‘Water management ‘ and second on is ‘Redevelopment’ . At that time women gave us all the information on water management but they did not give any information on redevelopment because they do not have any knowledge of redevelopment. When we asked them questions on redevelopment they told us that asked these question to my husband. So on ‘water management’ subject our interviewee were women and on ‘Redevelopment’ subject our most of interviewee were men. Same thing is in our ‘Mythologies of Mumbai’ project when we get interview of women they give all the information about festivals and education system but they do not give any information on caste or different types of hierarchies. Only men can give information on these topics. So it is necessary for us to frame different types of questions for different types of gender. - Kiran
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