This two month training course concludes with an plan that has taken up the majority of the last month. Our course of twelve trainees was split into three groups of four and I was in a group with Priya (from Tamil Nadu, India), Suri (Orissa, India) and Sakala (Kathmandu, Nepal). The action plan is meant to be a ‘plan of action’ for empowering your local community to identify and tackle a health-related problem. The methods of community identification, equity, integration of multiple sectors, and empowerment taught during the first month are now implemented into our local community. The month it took to write this action plan was an exciting and difficult experience.
Our group decided to focus on a community that Sakala was working with in southern Nepal. Sakala works with the Leprosy Mission (www.leprosymission.org/) and for the past couple of years has been involved in an unsuccessful community outreach project that had good intentions but failed because of its top-down approach and poor community-based methods. So Sakala came to Jamkhed to learn how to empower the community not to get rid of Leprosy but rather to physically and (more importantly) socially rehabilitate people with disability into the community. The disabled in these caste-driven societies of Nepal and India are so shunned from the community and their family that they are often kicked out of their home and forced to beg on the streets. We understood that there was a lot of social rehab that needed to be done before any physical rehab programs could be initiated.
The action plan became a great learning tool as we realized that in order to have the community invested in the project and create sustainability, an issue that they cared about and identified needed to be the starting point. The same was true when Drs. Mabelle and Raj Arole came to Jamkhed in the early 1970’s. Their mission was to treat and prevent disease but they were forced to start with projects that the community was interested in working with first, like agriculture and employment (food for work program). In Nepal, the community would not be interested in working to rehabilitate the disabled. After some hypothetical community activities (based on historical reality), the village decided that malnutrition was the top health priority. So while we went into the action plan hoping to tackle disability, the rest of it was dedicated to malnutrition. It was a brilliant lesson of equity and started at the level of the community and with their own needs identification. Disability would eventually be dealt with at a later point, but this project would have been as unsuccessful as the first without proper community participation.
The most trying task of putting together the action plan was working as a team and having productive disagreements rather than ranting arguments. Since we come from three different countries and very different backgrounds, we disagreed on a lot. The main issue was how to properly introduce ourself to the community and ensure that the most marginalized were included in our project. With varying levels of English proficiency, computer literacy, community experience and work ethic, we ended up spending most of the time working through arguments to the most agreed-upon solution. Discussing different methods and tactics was a great learning tool but getting frustrated and having them angry with you was not as nice. All-in-all the action plan was a success and if you’d like to see a copy of the 20-page report, let me know and I’ll email it to you.
The two-month training course ended on Saturday and provided me with the grounding to spend the next nine months on community projects and grant writing/fundraising. A major take-away lesson of the past two months is that success in health is achievable by trusting the community, empowering the socially-minded and using appropriate technology.
Since I have arrived around two months ago, I have had a couple observations that have caught me by surprise and that I would like to share.
The World’s Largest Public Bathroom: Everyone poops everywhere. Waking up at 5:00am before the sun rises to walk along the street to a nearby lake is like entering into an open public bathroom stall. Men, women and children are squatted down on the gravel off the road freeing themselves of the previous day’s consumption. We make sure to walk in the middle of the street, simply looking ahead as the bathroom-goers watch us as we pass. The walk back after the sun has risen is the more treacherous time, as traffic forces you onto the side of the road and making you watch every single step. The odd thing is that many of the villages and even some private homes have bathrooms. In fact, CRHP is actively working with a water and sanitation NGO in India to provide all project villages affordable toilets for at least 70% of the population. Getting the toilets into the villages is not the hard part, though, but rather getting people to use them is the major barrier. Villagers are accustomed to using the area behind their home, on the side of the road, or next to a tree and are not comfortable entering a small room to perform the same act. In most of the villages I have seen the bathrooms are being used as storage areas and filled with boxes.
Speak Softly and Carry a Big Stick: Every Tuesday to Wednesday, the Village Health Workers come from their many different villages for ongoing training at CRHP. Many VHWs who have worked for over 25 years still come every week. And yet during morning service every Wednesday morning as I sit on the floor, I am humbled by their humility and awed by their confidence. Almost all these women have gone through incredibly difficult relationships and experiences, either physically, socially or mentally, but their transformed spirit and their ever-positive view of the world puts me to shame. There’s no real way to describe it and I don’t even fully understand it, but these women come together as best friends every week and sit so tall, always say hello to me, and continue to share stories of the past week and methods to further improve their community.
Two Dogs For Every Cow: For all the cows that I see, there are many more dogs. Almost all are wild and live on whatever scraps people will feed them or whatever meat they can find that isn’t feeding the equally-hungry humans. Thus, many dogs are emaciated, turn aggressive and spread rabies through bites and licks. Thereby, if a dog bites a person, then the dog has to be killed. Unfortunately, a veterinarian or the Municipal Dog Squad is often not at hand, so either the village is forced to kill the dog or a caste group is called who specialize in trapping the dog and killing it. A couple days ago I had the pleasure of witnessing the stoning of a dog that had just bit a woman’s arm. It was probably one of the more barbaric things I have ever seen. The fact that the dog had to be killed was understandable but the trapping of the dog in a corner, then slamming it into the wall with bricks and raining down on it with stones until it was dead caught me by surprise to say the least, considering the drastic difference in dog care in America. Efforts to limit the population of stray dogs in major Indian cities have been taken up by local governments but many animal rights activists have protested the methods used to kill the dogs. I would imagine that this was one of those methods.
“Primary Health Care: Now More Than Ever”: The World Health Organization recently released their 2008 annual report, this one focusing on the need for primary health care in developing countries. And while a similar message was delivered thirty years ago at the Alma Ata Conference, this time the report represents a renewed commitment with the same necessity for equity, integration and empowerment. Jamkhed has been a leader and model for community-based primary health care since the early 1970’s and the village efforts are still self-sustaining. It’s amazing how such complex vertical programs organized by very well-intentioned and well-funded NGOs can have such a little effect on the overall health of the community while a simple, low-cost solution and idea like primary health care can continue to work after thirty years. To view more info on the WHO Report, click here.
“This presentation just failed to discuss the real issues that face leprosy,” Shobha Arole remarked after one of the trainees had finished making her 20-minute presentation on leprosy. Her presentation was just like the three presented the day before – very dry, clinically-based and made for presentation in a hospital. The presentations focused on the signs and symptoms of disease, the treatment, the different classifications (of leprosy) and some barriers to prevention. However, as Shobha acknowledged afterwards, it completely failed to address the reality of leprosy in the village and the situation on the community level. It failed to be practical and address why the disease could not be eradicated in a village that has leprosy medications directly on hand. And finally, Shobha was worried that after one month of the training course we still viewed disease in the same diagnosis-then-treatment fashion.
Leprosy is defined by the bacterium Mycobacterium Lepraebut it isn’t the bacterium that keeps the disease alive. Leprosy is kept alive and caused by stigma, by detrimental traditions, by shunning it out of the community. It is caused by lepers being forced to go to leper camps and leprosy-specific hospitals for treatment even though it is much less contagious than tuberculosis or the flu. The perception in the village is that leprosy is incurable, highly infectious and a ‘divine curse’ of the Gods. This understanding leads to a fear of the disease much out of proportion with what is reality. When a villager is found to have leprosy, they are immediately thrown out of the house by their family and shunned from the village by their community. They are now on their own for food, shelter and work. This behavior and tradition keeps leprosy stigmatized, keeps it mystified and leads to future leprosy patients not offering themselves for early diagnosis, only to be exposed when deformity occurs. In reality, though, leprosy can be detected from a simple pale patch on your back or forearm and controlled from this point so it never spreads to the rest of your body and creates deformities (which are not caused by leprosy but rather from misuse due to the leprosy-caused lack of sensation).
How can leprosy truly be cured in these villages? By removing the social factors that keep the disease alive. By destigmatizing the disease and showing that leprosy is a bacterial disease, not a deformity or curse. Efforts need to be made to bring lepers back into the community and incorporated into public life. Once this effort is made, it shows that these are normal villagers who were simply diagnosed for a bacterial infection too late. When the stigma is lessened, the fear of the disease is mollified and villagers will present with possible leprosy at the first sign of a discolored patch to then contain the disease so it never reaches disfigurement. This brings the disease to the open and allows for the possibility of treatment and village eradication, not the antibiotics. The antibiotics have been available for village-use for years, but it is the social determinants that perpetuate the disease, not the medical ones.
The trouble is that all too often we are taught to think of leprosy (and other diseases) by classifications, definitions, medications and treatment. However, in reality, this state of mind takes the focus of the disease away from the social factors, away from the true root causes and the stigma to only further alienate leprosy patients and assist in mystifying the disease as a medical rather than social problem.
In developing countries and among the uneducated population, the true disease is not a virus or a bacterium but rather the ignorance and lack of knowledge/understanding endemic in the community. The availability of medications is not the problem, it’s the social causes that are the problem, and that is what needs to be addressed to cure these diseases.
Doctor Arole often comments that if communities could treat the same disease hundreds of years ago (without drugs) better than we can now (with drugs), then we must not be addressing the necessary intervention. What I understand is that we need to treat the society, not the disease. If we address the social problems, then we cure the disease regardless of drug treatment. Medications are needed but only after behavior modification, which is often a response to societal over medical acceptance.
In some ways these social interventions are viewed as prevention, such as change in diet, spreading knowledge and encouraging safe behavior, but it should also be viewed as treatment. Rather than just treating the disease, though, we are treating the community.
Shobha’s comments helped me to focus my presentation on community involvement and on village-level specifics. Watershed development is not a disease but it certainly is related to health. I decided to do my presentation on watershed development because I knew absolutely nothing about it and have lived in urban settings my whole life. To the average rural villager, though, all your food comes from the farm and your diet is a direct reflection of the crops you and your community grow. So when Doctors Mabelle and Raj Arole went into the villages to educate people on nutrition, they soon realized that they could not give advice on nutrition when people don’t have nutritious food - and in some cases any food at all. Realizing that health and development are two sides of the same coin, they worked with the village to organize community groups that properly intervened in agricultural life and ensured both a higher production of crops and a higher equity of crop distribution.
They achieved both these goals by setting up the watershed development program to minimize ecological degradation and increase economic sustainability. Ecological degradation was solved with three major projects: minimizing soil erosion, properly managing and harvesting water, and increasing the vegetative cover. Economic sustainability was solved by: village-level watershed development committees, payment of workers with food rather than just money, and proper crop rotation to ensure, for example, that a ‘heavy water-needing crop’ was not grown in a low water field. The result of their effort is amazing as they have created a sustainable project that continues to bring benefits year-in and year-out, even in drought-laden years. If you are interested in learning more about the project then feel free to look at the two documents I attached to the email I sent out.
Also, to view the photos I uploaded, you can see them by clicking here.
