Overcoming Leprosy
TOWARD HUMAN SECURITY

Fighting for Own Rights: An Organization For and By People Affected by Leprosy


The Association of People Affected by Leprosy (APAL)* is an organization in India run by people affected by leprosy. The Nippon Foundation has provided support for the organization since its inception in the belief that individuals cured of the disease should play a leading role in rooting out discrimination. This article highlights the work of Ram Barai Sah, a member of the organization’s executive committee who is also in charge of activities in the state of Bihar.

2014.03.31

Separated from Family at the Age of 12

When Ram Barai Sah visits a colony, residents gather around him in groups of twos and threes to voice their grievances to him: “Please dig us another well.” “We need more toilets.” “Please help us get a pension.”

Most of their demands have to do with living conditions at the colonies. Ram Barai is not only serving the people affected by leprosy, spending his days hearing their grievances and working with them to resolve issues; he is affected by leprosy himself. APAL was founded in 2006 by representatives of some 700 leprosy colonies in India to bring together people affected by the disease in a fight against discrimination.

PhotoRam Barai was 10 years old when the first symptoms of leprosy appeared. The year was 1980. White lesions appeared on his toes, and he lost some of the sensation in these areas. When similar patches appeared on other parts of his body, he went to a doctor but was told it was a skin condition. Eventually, however, the lesions grew in size and one day he lost all sensation in his toes.

Ram Barai also got ulcers on the soles of his feet that would not heal. For two years he hid the condition, but one day, a classmate noticed the lesions on his toes. From then on, the children at school ignored him. Ram Barai felt isolated and lost interest in his studies. His grades began to drop, and he got failing grades on his tests.

One day he was called into the principal’s office and told to take off his clothes. The principal saw the lesions on his body and told him he could not come back to school. The school took away the bag which was provided to him—and Ram Barai cried all the way home. By the time he got back to his village, rumors had already reached the inhabitants that he had the “beggars’ disease.”

Though Ram Barai had stopped going to school and spent his days at home, the village chief came by and told his father that if he did not throw his son out, the entire family would have to leave the village. His father had no choice but to tell Ram Barai to go. His father did, however, build Ram Barai a small hut on the riverside so he had a place to live.

Ram Barai describes those painful years. “I was twelve then and hungry all the time. I started going to a nearby village and begging for food. For the next two years I stayed alive by begging. It was a horrible time for me, and I often thought of killing myself.”

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The Stigma for the Family

Ram Barai’s luck changed when he was 14. A beggar came to his hut asking for water, and he realized they both had the same condition. The visitor told him the disease could be cured with medicine and advised him to go to Little Flower, a community run by a Christian volunteer organization. Ram Barai told his father, who was overjoyed and immediately took his son there. After he got there, Ram Barai was hospitalized and two of his toes were amputated because of the size of the ulcers.

Three months later, Ram Barai was cured and ready to start a new life back home. However, his father told him that nobody in the village would marry his four sisters and, saying Ram Barai brought nothing but bad luck to the family, and asked him to return to Little Flower.  

Ram Barai wanted to work at the hospital in the Little Flower, but he was not able to get the job. Finally, one of the Catholic brothers took pity on him and offered him food and a place to sleep inside the hospital. For two years, he was dependent on the kindness of the brother, but after turning 16 he got a job at the hospital as a handyman, with a wage of 10 rupees (about 15 cents) a month.

Ram Barai spent the next few years assisting the clergymen, providing patients with physical therapy, while also picking up English from the foreign volunteers who visited the facility. He got married at the age of 19 to a woman who had also come to the Little Flower for treatment. He made extra money by using the English he had learned to show around volunteer groups visiting from Europe and the United States. When he was 32, he used the 2,000 rupees (about 30 dollars) he had received from one of these groups to open a general store. He subsequently made enough money to build a house and send his two sons to college in Delhi.

Ram Barai got involved in the APAL in 2009. He was inspired by the words of Kazuko Yamaguchi, then the trustee of the Sasakawa Memorial Health Foundation, whom he met in the APAL’s Northern Regional Conference in Uttar Pradesh. Yamaguchi told him, “I know you’ve probably shed your share of tears, but even today people around the world continue to suffer. Please think what you can do to help all the people out there today who are still crying.”

Ram Barai threw himself into the APAL’s initiatives in Bihar. Eventually, his commitment and proficiency in English led to his appointment in 2011 as an Executive Committee Member.

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The Stigma Borne by the Children

PhotoThe discrimination Ram Barai encountered is not something of the past. Today people diagnosed and cured of the disease across India continue to be the target of discrimination. At the Areraj colony in Bihar, for example, Ram Barai found that 29 children were not attending school; he was told by the people who run the facility that local schools refused to accept them.

Ram Barai proceeded to take the children to the four elementary schools in the area and meet with the principal at each of the schools. He was given the same explanation by all four principals—that the colony was not part of their school district and the children should find somewhere else to go. Left with no choice, he called on the head of Areraj village council. One of the four schools agreed to accept the children, in line with the order of the village council head, on one condition: the children would have to bring their own plate, cup, and utensils to school, which must be kept separately from those used by the other students.

PhotoThe following day, Ram Barai set off to buy plates and eating utensils after seeing the children off to school. The children, however, returned to the colony shortly after they left. The teachers at the school told them there was no place for them and sent them home.

Ram Barai got in touch with a reporter at a local paper, explained what had happened, and brought a petition to the district educational officer, who made a call to the local Areraj educational officer with Ram Barai right in the room. He also demanded that the teacher who turned the children away be suspended.

Despite this, three days later Ram received word that the children had again been turned away. Ram was on a business trip and could not go to Areraj so he requested the state leader in charge of Bihar at the Association of People Affected by Leprosy, Kamlesh, to go in his place. The district educational officer proposed a meeting with principals from all the primary schools of the district. In the meeting, the district educational officer told the gathering, “Look at Kamlesh. He spends his time at colonies, yet he’s not infected. What are you all so afraid of?” After this, the children were finally allowed to enroll. What the local officer did not realize was that Kamlesh himself once had leprosy. The results might have been very different if he had known that.

Separate Classrooms

PhotoRam Barai decided to get a private tutor for the children so that they could catch up with the schoolwork they had missed. He spoke with more than 10 people, but no one was willing to go to the colony. He finally consulted with the village council head and was introduced to Sanju Devi.

Ram Barai stresses that educating the children at the colony may be a feasible solution but not a good one. “Right now there aren’t enough classrooms in the elementary schools, so we’re looking into the possibility of getting a teacher to come and teach them at the colony. Ideally, the children should attend the same schools, play cricket with the other kids, and study with them, because this is the only way the parents of the other children will believe leprosy is not infectious. It may take time, but it’s important to work on changing the way people think.”

The APAL is making steady headway through its strategy of having people affected by leprosy take the lead in fighting discrimination. In 2010, representatives of the organization, together with Yohei Sasakawa, chairman of the Nippon Foundation, called on the deputy chief minister of Bihar State and the health minister to consider enhancing pension benefits for people affected by leprosy.

In the first meeting, the members of the APAL were very nervous and hesitated to sit in the front row. The officials of the state government said that they would consider their demands if they prepared a complete list of people affected by leprosy living in the colonies. Hearing this, they fanned out across Bihar, an area even larger than Hokkaido, and in two weeks’ time finished the survey and wrote up the results. By the time they submitted the report, their initial timidity had been replaced by new confidence and determination.

The fruit of their efforts and negotiations was the decision in 2013 to provide 1,800 rupees (about 28 dollars) a month to all people in Bihar cured of the disease. This was substantially more than the 200-rupee (3-dollar) disability pension the state had paid them until then.

The progress that has been made is giving people affected by leprosy new confidence and new energy to fight discrimination. Individuals once separated from mainstream society, people without a voice, are now gaining the courage to go beyond the walls of the communities where they have been isolated and tell their story.

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* The Association of People Affected by Leprosy was formerly called National Forum India; the organization adopted its new name in November 2013.

Photographs by Hisayoshi Osawa