An impoverished leprosy community uplifting itself from the inside-out.
Location: Ahmedabad, Gujarat, India
THE GANDHI LEPROSY SEVA SANGH (trans. Gandhi Leprosy Service Society) is a small community of approximately 400 residents located in Ritanagar, an industrial slum area on the western border of Ahmedabad in Gujarat state, situated between bustling Interstate Highway 8A and the city's central sewage canal.
The community formed in 1968 and consisted primarily of leprosy infected migrants who fled their native villages from the southern states (predominantly Karnataka and Telangana), seeking refuge and opportunity in Gujarat, one of the nation's most prosperous with a value system rooted in Mahatma Gandhi's spiritual legacy.
These original settlers of the Gandhi Leprosy Seva Sangh (GLSS) were forced to leave their native places because of the severe social stigma that is attached to the disease, as well as the issues of untouchability and casteism it surfaces. As an example, many faced the risk of being burned alive, while others felt they had irreparably shamed their families by developing the disease, which can be considered a sign of divine retribution for sin.
It's not uncommon to meet elder members of the GLSS who left behind husbands and children decades ago, never to see them again.
For this reason and others, leprosy patients tend to stick together and form their own communities where they can support each other, while attempting to survive in an unwelcoming and, at times, hostile social environment. It's been reported that there are more than 1,000 such leprosy communities spread throughout the country.
Leprosy is a chronic bacterial infection whose exact mode of transmission still, to this day, is largely unknown. The disease causes unsightly and painful skin lesions, respiratory and eye problems, and most notably, slowly eats away at the extremities, leaving calloused stumps for hands and feet if left untreated.
95% of the human population is thought to have natural immunity to the disease. Despite this, most people mistakenly believe you will contract leprosy simply by being in the presence of a leper.
Because of the untouchability issues, as well as this somewhat irrational fear, leprosy patients have a near impossible time finding employment and typically resort to begging to piece together a living. The GLSS has even been derisively referred to as bhiknagar, or city of beggars, as many of its members can be found out on the streets of Ahmedabad begging for change under the punishing Indian sun.
The World Health Organization (WHO) has been on a "Final Push" campaign to eradicate leprosy, whose prevalence throughout the world has already been reduced by an astonishing 90%. Even though it is easily treatable with Multi Drug Therapy (MDT), which disables a leprosy patient from passing on the disease after just two weeks of treatment, it still remains prevalent in India and a handful of other countries.
Thankfully, all leprosy patients of the GLSS have been successfully treated with MDT and are unable to pass the disease on. This has lead to no new cases of leprosy developing in the community for years.
In 1968, the GLSS was typical of a classic Indian slum. Members lived in crudely constructed homes, which would be destroyed each year in the heavy downpours of the monsoon season. During this time, none of the leprosy patients had received treatment for the disease, which meant they were suffering from its symptoms including festering wounds unable to heal, they were begging, and were without adequate shelter. It was a desperate situation.
In 1975 or so, the current president of the community, Pooshiyadada (dada is a respectful term for an elderly man), arrived from Hyderabad. Though positive with the disease, he received early treatment and never developed visible marks of it. Since he had some education and even spoke a little English, he was able to create a professional proposal requesting support from the Lion's Club of Ahmedabad, an international charitable organization whose office is only 15 minutes away from GLSS.
The proposal was accepted and things started to turn around in a major way. A sizable plot of land was purchased and officially registered with the government, over one hundred small concrete homes (usually a 10' x 10' room) were built, and all the leprosy patients received free MDT treatment and medical care. This miraculous intervention from the Lion's Club stabilized the community and laid the foundation for it to become the place it is today.
Meeting Manav Sadhna
With secure land and sturdy homes, residents of the GLSS have been able to live out their lives over the years with greater ease and peace. 2nd, 3rd, and 4th generations have been born into the community and walking through it today, you would not immediately believe the poverty issues that are present or its desperate past.
Shortly after the Gujarat riots in 2002 and through serendipitous circumstances, the GLSS caught the attention of Manav Sadhna, a local NGO (Non-Governmental Organization) based on the hallowed Sabarmati Gandhi Ashram. As with the Lion's Club, this relationship would prove to be another major turning point for the community.
With Manav Sadhna's assistance, the GLSS now receives significant attention from the local city government or AMC (Ahmedabad Municipal Corporation) who has provided a number of previously lacking services such as public toilets, functional drainage, and street lighting. These measures vastly improved the sanitation conditions of the community and have given it a greater sense of validity.
In addition, Manav Sadhna organized free medical camps and care for the leprosy patients, facilitated several tree plantations, and the construction of a $30,000 community center. It also launched after school tuition programs, as well as a daily dinner program for 30 of the neediest leprosy patients of the community.
Most of all, Manav Sadhna's team of dedicated karyakartas (staff), through a slow and gradual process, have helped inspire key members of the community to be the change, improve their outlook on life, and start taking a greater leadership role in the community.
I lived full time in the GLSS from January, 2011 to December, 2012 and again from January, 2013 to March, 2014 working closely with Manav Sadhna to help further their efforts.
Living in the community as a resident, sharing meals in homes, spending time with leprosy patients, celebrating all the major Indian festivals, suffering through ruthless summers where temperatures reached as high as 45C (or 113F), and dealing with the same slum issues as my neighbors — such as days on end of contaminated drinking and bathing water — I came to be seen not as as social worker or volunteer but as a family member, which was an asset instrumental to the success of the programs I launched.
Over the course of those 27 months, I facilitated a plethora of diverse yet interrelated development projects and educational programs, having the particular effect of motivating a notable percentage of the younger generations to care more about their education, their futures, as well as the conditions in the community (qualities not easily found in slum environments with a history of poverty).
As an example, in the wake of my first year at the GLSS, a youth leadership group formed on its own to continue the momentum that had developed through all the projects we initiated, especially the community-wide day of sanitation.
This group, while it was active, called itself the "Me 2 We Volunteer Group." Each of the members took an oath to pursue their education, help in the home, and find ways to serve in the community. For a time, they met regularly to discuss ways to improve the community's welfare and organised a number of volunteer activities. Though the group ultimately disbanded, the inspiration that created it carries on.
Me 2 We is the perfect symbol of the kind of change
Manav Sadhna and I have been able to effect, i.e., inspiring others to be the change and their own answer, which then transforms beneficiaries into volunteers and humanitarians, ultimately breaking the cycle of poverty.
In addition, I worked with a young boy, Guru, severely disabled by Cerebral Palsy; taught leadership skills to a group of dynamic youngsters; facilitated the construction of a children's playground; and, oversaw the renovation of an abandoned piece of land into a vegetable and flower garden.
When you piece everything together, what you have now is a functional community with basic city services, leprosy patients who are living their lives in peace with proper medical care, and younger generations growing up with new values who will, for the most part, make different choices than that of their largely uneducated parents.
Dream Class/Girls Circle
Toward the end of my onsite tenure, I launched an after school program for a pioneering group of eight young women to support their dream of going to college.
It was a controversial move given the "low" position females typically hold in Indian society, where the majority do not complete their basic education and, instead, marry young to become housewives. Parents and some elder members of the community resisted the program and did not understand why these girls were defying cultural tradition and making their own, independent decisions.
Over the course of five months, I was able to create a sound group dynamic based in values, find donors to sponsor the tuition and college fees, and I connected the group to local mentors and advisers who could be called on for ongoing support.
The class, called Dream Class, turned out to be a great success. All of the members ended up graduating from college or Technical Institutes and were the first females in the community's history to accomplish such a feat.
Most importantly, with the assistance of my co-teacher and translator, Rakhi, I was able to foster better understanding with the parents and community about why girls wanted to pursue their education. Dream Class, now called Girls Circle, is currently offered yearly and was adopted by Aruna Chauhan, one of the original members.