Indian society still cannot accept leprosy patients or their children, despite the fact that it is a curable disease. People look at them with contempt. It should change.
This is my new life and I am indebted to my Ma [mother] for it,” says Gundeli Bai, who has lost fingers on both hands due to leprosy. “I would have died, and my body could have been eaten by dogs long ago.” Bai has been living for more than two decades in an enclave for leprosy patients started by Sr. Julia Thundathil. She met the Sister in 1994.
Julia, an Augustinian nun, set up the enclave at Sendhwa, a village in Barwani district in the central Indian state of Madhya Pradesh.
Sr. Julia says, “I found them on the roadside with worms coming out of their wounds.” This encounter motivated her to dedicate her life to restoring dignity to lepers. “All of them were in their 60s and they were begging for food, as they had not eaten for days. But people often chased them away,” she added. Each of them had a heart breaking story behind them.
Julia returned to the convent, collected cotton and medicines, dressed their wounds, bathed all of them and fed them. “As I had no place to accommodate them, I had to leave them there and return to the convent with a heavy heart,” she remembers.
Sundari Bai is among 258 lepers from 85 families living in Harsha Nagar (joyful city), the leprosy patients’ enclave. Sub Divisional Magistrate Mahesh Badole, a top official of the district, says, “Whatever you see here is the outcome of the perseverance and hard work of Sister Julia.”
The official is the President of the Harsha Nagar Trust, which Sr. Julia formed in 1995 for managing the enclave. The trust’s constitution stipulates that its President should be the magistrate, in view of getting government help and public participation.
The government allotted 7 acres of land to set up the enclave, but nothing else for its maintenance. Proper accommodation is provided to every family with the resources she had mobilized from donors and other funding partners. What impresses the Magistrate most is, “The Sister cleans the lepers’ wounds, and dresses them every day, without any hesitation, as if caring for a small kid.”
The officer, however, is skeptical that it could continue without her. “There is nobody to look after them in her absence, even when she goes out for a day or two.” But Sr Julia is confident the service will continue. “It’s not my project; it’s God’s, and it will continue, with other Sisters taking my place,” she says.
Pain of Rejection
Everyone in the enclave has stories of rejection by loved ones. Sumaria Ganga Ram’s family performed last rites over him. He had a happy family of wife and three children who now pushed him out of home, although he owned 5 acres of land in a remote village.
“I lived on begging for five years until I met Ma,” he says. “Even hospitals chased me away.” Sr Julia says many people dump their leprosy-infected relatives outside the enclave at night. Shanti Bai, a mother of five children was one of them left by the family outside the enclave 21 years ago.
Oasis of acceptance and care
The Trust encourages the residents to marry and lead normal family life. Sr Julia helps their children by providing education and skill development courses to enable them eke out a living as adults. “Every child born to them,” she says, “is separated from the parents at the age of 5 and put into schools,” says Julia.
Since they cannot be admitted to nearby regular schools because of the social stigma, she sends the children to far away places. Currently, 87 boys of affected parents study in a school managed by the Jacobite Syrian Christian Church in Itarsi, 215 miles northeast of Sendhwa. At least 33 girls are studying in Pune, 264 miles south of Sendhwa.
The children are aged 6 to 18. Some like Dilip Arya, a 12th grader, work part time as teacher. “I have not told anyone in the school that I am the son of a leprosy couple,” the 21-year-old youth said. “The school management will not allow me to teach, and students also will not sit in my class.”
Sr Julia says, “Indian society still cannot accept leprosy patients or their children, despite the fact that it is a curable disease. People look at them with contempt. It should change.” She quotes ignorance and prejudice as causes for this.
“My own attitude toward lepers changed only after I joined the convent.” A native of Kerala, she took her final vows in July 1995 in the Order of St. Augustine. She earned an MSW which she says helped her understand that social work is about transforming the lives of the poor, sick and needy.
Initially, the Congregation – used to more traditional services – was not enthusiastic about her mission. But gradually they have come to value her work.
Love of Christ Urges
In 2000, Julia was struck with breast cancer, already in third stage. She underwent immediate surgery. However the illness only added to her zeal for the needy. A survey she conducted in the district had revealed that about 20,000 people among a population of 1.4 million were disabled. So she expanded her work also catering for differently abled persons.
She has formed a network of self-help groups whose members visit the homes of the disabled people and counsel their families to accept them as a blessing rather than a curse. She has appointed one caretaker for each family who would help build their self-esteem. These self-managed groups are composed of people from poor communities helping themselves out of adverse circumstances through financial planning under the guidance of experienced volunteers.
More than 150 self-help groups have been set up to assist 1,800 people with disabilities. “Work is in progress to link the entire 20,000 disabled under one umbrella,” says Sr. Navya Thomas, also an Augustinian Sister who shares the ministry. “We have formed a Disabled Persons Organization to bring them together and educate them about their rights and responsibilities. They will be given special training for livelihood projects so that they don’t have to rely on the mercy of others,” she added.
About 1,800 disabled persons have been trained so far in tailoring, weaving, and spice and clothing production. Each person earns an average of Rs. 300, daily.
Recently, Sr Julia has led her Congregation to launch community health intervention and HIV/AIDS screening, awareness and control programs. They also work among T.B patients in this backward, tribal-dominated district.