Alka Pande, GPJ India
Leprosy-affected people, who cannot work because of limb deformities, have formed a singing group that practices daily in front of a temple on the campus of Adarsh Kushth Ashram. The group, which sings spiritual songs, travels to different cities to perform by invitation.
LUCKNOW, INDIA — When Ram Naik, 81, the governor of Uttar Pradesh state in northern India, first ran for public office in 1978, he received 67 percent of the vote.
Although he handily won a seat in the Maharashtra state legislative assembly, he was disturbed to learn that he had received only three votes at one polling station.
“It was a surprise for me since I had otherwise won with such a good percentage,” Naik says.
Curious, Naik investigated and found that the Borivali constituency polling station was in a colony of leprosy-affected people.
Naik, who was known as a strict disciplinarian, learned that colony residents feared he would stop them from begging and illegally manufacturing alcohol – the two most common ways leprosy-affected people earn their livelihood in India.
“This was a sort of alert for me, which attracted me to the area,” Naik says.
Although the disease is not very infectious, leprosy-affected people are often treated as outcasts by those who fear contagion, Naik says. People with leprosy usually live in isolated colonies, areas set up by them or by the government. These colonies, located on the outskirts of cities, have few or no public utilities.
Naik says he understands the problems of common people because he comes from a middle-class family.
As an elected leader, he helped the colony in Borivali constituency to improve its civic amenities, including water, toilets, electricity and drains. He even helped with school admission for children of the colony who had been turned away.
“I started developing relations with about 500 families living there,” Naik says.
These relations grew stronger with every passing year. For Naik it was the beginning of a long journey into leprosy issues.
In February 2015, Naik successfully championed an eightfold increase in the monthly allowance paid to leprosy-affected people in Uttar Pradesh.
The decision is being incorporated into state policy, says Sunil Bhartiya, state leprosy officer and joint director of the Directorate of Medical, Health and Family Welfare.
In February 2015, Naik met with Indian Prime Minister Narendra Modi to discuss a citizens’ petition to improve the lives of leprosy-affected people throughout India. The prime minister assured him that he would look into the matter, Naik says.
Naik is a pioneering advocate for leprosy-affected people. In April, he became the first governor to invite leprosy-affected visitors to the stately Uttar Pradesh governor’s mansion. He also persuaded the state government to organize three district workshops to raise awareness of leprosy; the first was held in Lucknow district in May.
Naik served three terms in the Maharashtra state assembly. He was then elected to five consecutive terms in the Indian Parliament, representing North Mumbai from 1989 to 2004.
He has served as a state minister and as a Cabinet minister of the central Indian government, holding various portfolios during his tenure in Parliament.
He was appointed governor of Uttar Pradesh in July 2014. In August and September of last year, he also served as governor of Rajasthan. In India, a state governorship is a ceremonial role; a governor has no authority to introduce or enact legislation.
Before he became Uttar Pradesh governor, Naik served as president of the International Leprosy Union-Health Alliance for two years.
Photos by Alka Pande, GPJ India
The government of Uttar Pradesh state provided the land for Adarsh Kushth Ashram, where 80 families of leprosy-affected people live. Local charities and individuals often donate food, money, furnishings and appliances to the ashram.
While the world outside the Adarsh Kushth Ashram looks at leprosy-affected people with disgust, colony residents give each other community, friendship, consideration and respect, making a happy life possible.
When Uttar Pradesh Governor Ram Naik turned 75, his friends and colleagues celebrated the day as Amrit Mahotsav (“Elixir Festival”) by bringing out a coffee table book on his achievements. The book, which is more than 360 pages long, notes Naik’s achievements as a politician and social worker, including his work for leprosy-affected people; it includes tributes from people who have known or worked with him.
After living a life of dejection for more than three decades because of the stigma associated with leprosy, Prem Singh, the elected president of Adarsh Kushth Ashram, says he feels loved and wanted at the colony.
Prem Singh was orphaned at a young age. When his leprosy caused deformities in his hands and feet, his close relatives abhorred and rejected him. His deformities prevented him from working.
As the manager of Adarsh Kushth Ashram, a leprosy colony in Lucknow, India, Shivanand Paswan ensures that the colony’s 80 families get their share of the resources donated by local residents.
Leprosy, a bacterial infection, causes anesthetic lesions – red patches of skin that deaden underlying nerve tissue and can lead to deformities. It is treated with a combination of antibiotics.
Leprosy has been effectively eliminated in 33 of India’s 36 states and territories, including Uttar Pradesh, according to the Progress Report for the year 2013-2014 of the National Leprosy Eradication Program of the Ministry of Health and Family Welfare. Leprosy is considered eliminated when its prevalence drops below one case per 10,000 people.
India recorded 92,000 leprosy cases as of April 2013, making the national prevalence rate 0.73 cases per 10,000 people, according to the progress report. But Uttar Pradesh still had nearly 15,000 people living with leprosy as of March 2013, many of them in 72 leprosy colonies.
In February 2015, Naik persuaded Akhilesh Yadav, chief minister of Uttar Pradesh, to propose an increase in the allowance of leprosy-affected people, which had been only 300 rupees ($4.70) – and had been allocated only to people with 40 percent deformity caused by leprosy or other diseases.
Yadav raised the matter with the state Cabinet, which increased the allowance to 2,500 rupees ($39) for all leprosy-affected people, irrespective of their extent of their deformities, Bhartiya says. The Cabinet provided for the increase in the 2015-16 state budget.
“The allowance helps them to sustain their lives, as a majority of them are either unable to work or do not get jobs,” Bhartiya says.
The government has already provided for the increase in the budget for the current fiscal year, which concludes in March 2016, Bhartiya says. Once the increase goes into effect, recipients’ additional payments will be made retroactively.
The increase in allowance – which locals refer to as a pension – will make a real difference in the lives of people like Srinivas Sarkar, 45, who has had leprosy from a young age.
“If the pension is increased, we will be able to feed ourselves properly and can look after our families in a better way,” says Sarkar, an adviser at Adarsh Kushth Ashram, a Lucknow colony whose name roughly translates to “Ideal Leprosy Home.”
“At present, we survive on people’s charity because no one gives us jobs,” Sarkar says.
Bhartiya believes the increased allowance may also inspire leprosy-affected people to come out in the open. Fearing stigma and alienation, Indians with leprosy often hide their disease and avoid treatment.
Naik, encouraged by the success of his advocacy in Uttar Pradesh, wants the central government to increase the pension nationwide.
So he continues to push the Citizens’ Petition for Integration and Empowerment of Leprosy Affected People, which he first submitted to the Indian Parliament in 2007.
Soon after the petition was submitted, Parliament formed a committee to review it. Committee members visited 700 colonies of leprosy-affected people in different parts of the country, Naik says.
In October 2008, the committee recommended that Parliament increase the monthly allowance, provide free medical care and civic amenities in the colonies, and fund education and vocational training for the children of leprosy-affected people, Naik says. To implement the recommendations, Parliament would need to amend laws pertaining to 17 government departments.
In February, Naik met with Indian Prime Minister Narendra Modi to advocate implementation of the Citizens’ Petition.
“I am positive the situation will change, as the prime minister has assured me to look into the matter,” he says.
While advocating for policy changes that impact the entire country, Naik also believes in taking personal action to effect change.
On April 21, 2015, Naik invited a group of leprosy-affected people from Adarsh Kushth Ashram to Raj Bhavan, his official residence in Lucknow, the capital of Uttar Pradesh, to perform at a cultural evening for government ministers and officials.
“I read in a newspaper that the ashram has a group of singers,” Naik says. “They go to different cities to perform, but are never invited in their hometown, Lucknow.”
Prem Singh, president of the ashram, says the governor’s invitation deeply moved the members of the singing group. Leprosy-affected people value love, dignity and respect above money or charity, he says.
“We feel blessed experiencing the definition of love that he taught us,” Singh says with folded hands and moist eyes.
Leprosy-affected and orphaned at an early age, Singh was rejected by relatives. Alienation drove him to the brink of suicide.
“I was so dejected and crestfallen that at one stage I wanted to put my head on the railway tracks,” Singh says. “People would look at me with abhorrence and would neither give me a job nor space to live.”
He believes famous people like the governor can offset that stigma by visiting colonies and inviting leprosy-affected people to their homes. Such interaction sends a strong message, Singh says.
That message is already getting through.
Narayan Dutt Tiwari, the former chief minister of Uttar Pradesh, was so moved by the event at the governor’s mansion that he has invited leprosy-affected people to his own home for another cultural evening.
Naik, mindful of the stigma and discrimination faced by leprosy-affected people, wants everyone to learn the facts about the disease. He recently persuaded the state government to organize leprosy awareness workshops; the first was held in Lucknow in May. Workshops will be held in two other districts this year.
Ahmad Hasan, 74, head of the Uttar Pradesh Ministry of Health and Family Welfare, attended the workshop.
“Honestly, I had never been so close to leprosy-affected people,” he says. “But it touched my heart to see how sensitively Naik meets them and how tenderly he interacts with them.”
Ram Naik’s wife of more than six decades, Kunda, has seen firsthand Naik’s tenderness toward leprosy-affected people.
“So many times, he has taken leprosy-affected people in his car to meet various dignitaries,” she says. “People generally wash their cars after a leprosy-affected person sits inside, but he never even thought of it.”
Naik leads by example, people who work on leprosy issues say.
“Naik is one of the most sensitive politicians, who always felt the agony of leprosy-affected people and worked relentlessly for them, beyond his political sphere,” says Uday Thakar, 67, an adviser to the Association of People Affected by Leprosy India.
He has known Naik since the 1980s through their common advocacy for people with leprosy.
“His quality is that he is not a preacher but a man of action who leads from the front,” Thakar says.
Naik’s recognition and affirmation of leprosy-affected people carry great weight, Thakar says.
“It is like a celebrity endorsement,” he says. “When a person of his stature says something, he adds credibility to it.”
Naik hopes the awareness workshops in Uttar Pradesh will convey the right message, changing people’s perceptions of leprosy and making leprosy-affected people aware of their rights, he says.
He is also hopeful the central government will effect policy changes sought by the Citizens’ Petition.
“Today, due to stigma, the leprosy-affected people cannot live with their relatives. They are thrown out. Their children do not get jobs or admission in schools, even though they are not affected,” Naik says. “So, their empowerment and inclusion in the mainstream is extremely necessary.”
Alka Pande, GPJ, translated some interviews from Hindi.
