How did you like India?

Its been nearly (now over) two weeks since I have come back from India.  The very first question my family and friends have asked me from the moment I stepped off of the plane has been, “How was India?”   Every single time I’ve struggled to find an answer.  To give a simple response like it was good or it was bad did not give justice to the experience at all.  But more fundamentally, I didn’t know what make of the trip.  I signed up for the trip to learn more about India, particularly to get exposed to the culture, people and situations I’d only see fleetingly from  a car window when traveling with my parents.  However, it was impossible to anticipate to the impact of meeting with and hearing the stories of Indians seeking health-care.

The theme that tied the government hospitals, the Good Shepherd, and the SRH was that its clientèle were almost entirely poor.  In fact, all those infectious diseases that we studied in India predominantly affect these people.  We learned that the foundation of the health-care these people received was the government hospital, established in fact to make sure this population received some health-care.  However, ignoring the disparity between private hospitals and government hospitals, we learned from reading White Tiger and speaking to Dr. Beryl that there were institutional barriers for these people receiving health-care, ranging from discrimination over their economic status, the stigma associated with their disease, and merely their class.  Much of India’s health-care problems result from lack of education about these diseases and cultural and religious bias towards diseases and the people who suffer from them.  The value of life I heard many people say in India was not very high there compared to places like the US (incidentally the value of life here in the US is estimated by economists to be between 3 million to 7 million dollars).  This situation was made concrete to me when I talked to an individual suffering from leprosy who’d been living on the streets for six months after his family had thrown him out of the house and when I saw the living conditions of people of the Dalit class.

My initial reaction to this trip was to invoke Siddharta Gautama’s experience of stepping outside of his palace walls for the first time.  I’d never seen such living conditions as those of the dalits up close, only while driving through the outskirts of a city.  But regarding health-care, these people lacked any education on proper health practice as well as any knowledge of their health-care rights in institutions like the government hospital.  But the most striking experience was talking to the young man with leprosy.  As the man began to cry about his devastating situation, my inability right the injustice or to offer him any real aid made me feel powerless.  His pain reached beyond the pathologies of his illness (the disfigurement of his face due to the loss of his nose). What hurt him the most was to tell us that he was living on the streets due to the ignorance of his family.  While it’s true that the rates of leprosy are coming down in India and people are becoming better educated about the disease, this situation still exists, to the point where none of the patients if they could hide that they had the disease admitted to the community that they had suffered from it.

So how does one change an entire society?  Education. At first glance, it seems to be a problem associated with lower class families.  To a great extent it is, but even upper and middle class families suffer from ignorance over a more modern disease such as HIV.  The orphans at SRH have to attend schools secretive of their HIV status, due to the danger of their being kicked out of school if the larger community finds out.  Education about the disease cannot truly take place because sex education does not take place in any serious manner in the Indian public education system.  Part of the stigma lies with the Indian’s Victorian sensibilities regarding sex and talking about it in the open.  However, if one tracks of Bollywood cinemas over the decades, India’s sexual mores have been liberalizing if ever slowly.  Perhaps this liberalization will continue to a point where sex education and education about STDS can take place in an Indian classroom in earnest.

But this stigma about sex does not change the fact that the majority of people who suffer from HIV are actually of the lower class.  Likewise, as mentioned earlier most of these infectious diseases are diseases contracted mostly by people of the lower classes.  Many of these people do not have unrestricted access to education or in the case of the Dalits face discrimination at these places (~27% ) to the point of making education untenable.  Furthermore where a cultural practice of the caste system is that one’s occupation is what one’s father did, a cycle of poverty and lack of education develops.  It was obvious from visiting the Dalit neighborhoods that India does not enforce many if any at all of its rules protect the Dalit population’s rights.  With the lack of education, the Dalit population cannot truly advocate for themselves.  It’s here that a lack of education hinders this population, and really all poor, uneducated persons in India.  And the prospects of educating every one in this population with in a generation does not fill me with hope.  Media campaigns (and some of these may have already run) regarding this disease need to be waged by the government and advocacy groups.  TV, billboards, posters, and fliers need to be made to educate people about each of these diseases for more immediate relief.

As I’ve tried to organize everything I’ve seen on this trip (and writing this has helped tremendously), I finally reach the actually assigned part of this post.  Having had this experience, what will I do with it as someone who’s trying to become a physician-scientist?  I initially think of the summer reading for my entering class at Case Western, Mountains Beyond Mountains, a story about Dr. Paul Farmer’s Partners in Health.  Such an organization would be able to provide care without the social hangups and stigmas common in India.  However, I believe these problems and injustices are something the Indian nation needs to discuss and solve for itself.  An army of American doctors would not be able to patch this health-care system of 1 billion people, although the SRH and Good Shepherd make an argument this stance.  What I think would be of true benefit from a western and incidentally interests me more would be to do research oriented towards these infectious diseases, like the research that Pardis Sabeti conducts in West Afric on malaria and other diseases(who partially inspired my interest in an md/phd).  One of my initial interests in medicine was HIV.  In a mathematical modelling class I chose to reproduce a model of competition between two HIV strains of varying drug resistance under ART.  This experience in India has reawakened an possible interest in HIV research.

Third Week craziness

We spent the third week of our trip at the Operation Mercy India (OMIndia) site of the Good Shepherd Community clinic.  One major bioethical issue we considered was access to health care.  Generally in India, the poor we have learned are shunted to government hospitals or to cheaper but illegitimate services of unqualified people like the local compounder.  While we never visited a private hospital, several sources (Adiga’s description in his novel White tiger and fellow CITers) indicated that there is a wide disparity between the two types of hospitals in health care.  Two groups that are systemically susceptible to this discrimination are the dalits and the joginis.  It was these two populations that we visited in our third week.

When visiting Dalit “villages,” I mostly focused on their circumstances and lifestyles.  In the vast majority of their houses, one could not readily stand up.  All the villages we visited were situated near the places they worked.  One of the stark contrasts I drew was at a village near a resort the villagers were building.  While the resort was magnificent and served the wealthy of Hyderabad, the children in the village were studying in a windowless, unlit shack that served as a Good Shepherd School.  Many of them were migratory, traveling from some rural hometown to the city “village” based on availability of work and religious holidays.

One thing I did not pay much heed to but was brought to my attention in a recent discussion with Dr. Yadavalli was the significance of a church that had been built by another arm of the organization.   Originally I did not believe it was a very big deal since this was a Christian organization, the health workers insisted that they did not preferentially treat Christians over people of other religions, and there were also two temples in the village that made me believe that their was still an adherence to and tolerance of Hinduism.  In fact, many of the students at another Good Shepherd school that we visited drew pictures of a Hindu god just as others had drawn Jesus.

However, the implications of this church being built by the same organization as the one providing the health care were far subtler than the above considerations.  Even if the providers make no attempt to proselytize their faith, the association of this church with the health care workers who treats this patient is not lost on the patient.  This combined with the authority and power the doctor has in his relationship with a patient as we have seen in the previous week may create an impulse in the patient to please his/her doctor and adopt the religion.  So this creates  a situation where the health care this organization is providing is not just a matter of service but also a tool to convert the Dalit population.  After having understood this, I started to suspect the motives of OMIndia organization was not just to provide health care to an underprivileged population but also to convert them of the motives of the individual health care workers.

The joginis were a baffling lot.  Armed with the narratives in the AIDS Sutra, we marched in expecting former ritual temple prostitutes ready to share their tales of subjugation and essentially sexual trafficking.  However, what we got was a group of 40 year old women all talking at once (the fact that none of them was young made me hopeful that the ritual had in fact been abandoned).  Our translator would frequently get into conversations with a subset of these women and forget to translate what they or she was saying.  In fact, I doubted whether our facilitator was natively Telugu since she often used the English word for things like the word loan.  For me as someone who was raised in a Telugu household, it was difficult to understand the dialect of these women.  Needless to say, the true backgrounds of these women remained very murky.  Instead of asking questions about their past and details about the ritual and how society treated them and health implications, the translator instead chose to focus on asking how OM India could help them.  We learned from our facilitator that joginis (or at least these former joginis) were more like concubines who made livings dancing at weddings and other auspicious events rather than actual temple prostitutes.  But this was neither corroborated or denied by the former joginis as we understood it.  In fact, it appeared as if the women had come because they expected lunch and money for the day.  All in all this day was a lesson in how not learn about a stigmatized practice and population, much less unique health care situations regarding them.

The aptdc picture of the Hyderabadi community

In the second week of our course we embarked on a one day bus tour of the famous landmarks of Hyderabad.  Our mission: try to glean something about communities surrounding these tourist traps.  Perhaps because we had to start at 6:30 from the SRH and we were traveling without any breakfast, it ended up being a pretty grueling day.  First we visited the old palaces of the Nizams of Hyderabad and their associates.  The first had been turned into a museum, the Salar Jung Museum.  I had visited this museum nine years ago and was slightly disappointed that this museum was the best the A.P. had to offer (having been to ones in New York and D.C.).  The museum at that time was merely a collection of poorly preserved, not truly rare items of Indian origin.  A few items belonging to royal persons of Indian history were the only truly magnificent objects in the museum.  Nine years later, the museum had greatly expanded.  Now it had added new wings to house items from other regions such as Europe and the Far East.  With these being the newer wings, the tour guide’s focus was at these areas.  However, maybe because the security and art preservation at this museum were so lax, the vast majority of the items at the museum only dated to the Qing dynasty and the European art and objects mostly dated to the Victorian era.

The other palaces of the Nizams were more dedicated to documenting the lives of the Nizams.  While their splendor was mildly interesting, what fascinated me more was the Muslim neighborhoods surrounding them.  To learn more about Indian society and culture and its influences on health care access, we focused almost entirely on Hinduism with the exception of a small chapter in The Indians.  In previous trips to India I’d been passingly exposed to Muslims in India in places like the Mughal monuments in Agra.  Only in the most recent visit to India (incidentally for the first time after 9/11) when I flew directly into Hyderabad for the first time did I get a real glimpse of Muslim culture.   Just before the trip in a history class I learned that Hyderabad had been part of a Muslim kingdom, annexed by the Republic of India soon after independence and the Partition.  Despite this, I was surprised upon arriving at the airport in the middle of the night to find that a large number of the women wearing burkas (something you never see in the US).  When I returned to Hyderabad to fly back to the US, I went to Charminar the central landmark of the Old City (which we merely drove by on our tour).  Just by Charminar was Mecca Masjid, 400 years old and the third largest mosque in India.  Here was the heart of Muslim Hyderabad.  I was able to spend a few hours here observing the local people as my sister and aunt shopped for bangles (this place is known for its bangles shops).  Only some of the men wore plain shaliwars and a white caps.  Much more outstanding and thus fascinating was the seemingly large percent of women wearing black burqas, most wearing veils.  At the edges of these black coverings, you could glimpse that underneath they wore regular clothing.  Many of the burqas themselves seemed to have elaborate silver designs on the sleeves or other places.  It was pretty interesting to see a burqa store (on this trip).  My initial reaction was: WOW!  what a fascinating culture to be wearing such unique clothing to be surrounded by a very different culture, aesthetically at least.  But some questions arose too from watching them, mainly about the women.  Why did they wear them?  Was it out of religious conviction?  If not, were the strongly encouraged or pressured to by their religious leaders?  Was it the family?  Would they still wear them when it was over 100 degrees Fahrenheit  outside and humid as Hyderabad’s known to be?  How well would this practice continue in next generation and the generation after that?

With these questions in mind I observed the Muslim population.  At the Salaar Jung museum, I noticed a woman in burqa and a man in his very early twenties holding hands as they toured the museum.  It was then that the idea occurred to me that the burqa could also act as a cover from judgmental eye of the community, although whether this actually happens in reality I have no idea.  As we toured on the bus, I was able see into a passing Muslim school.  Interestingly, the teachers were women and wore saris.  I saw several women wearing burqas driving their own motorcycles.  Many walked independently and freely on the streets.  And so, I am baffled about the burqa and the people even more than ever.  Just outside one of the Nizam’s palaces was a hospital that seemed to serve an entirely Muslim population.  A tour of the place and interaction with its clientèle would have enriched and complemented our learning about health-care in India I believe.  Finally, after a lunch that I suspect made me sick the next day and the weekend after, we went to Golconda fort.  Here we saw a hindu puja being performed in a most visceral form with a man invoking the goddess Kali in a trance form.  This was definitely the most fun stop of the day.  We returned home well after dark, exhausted.