Manoj turned 18 this past year, which means that by democratic standards, he may now select his government, but regrettably, he is unable to select his society, which compelled him to spend years behind closed doors. The Manoj (changed name) who was before confined to his house due to social anxiety is now free to pursue his own course in life. Manoj used to be untouchable due to a disease known as “Leprosy,” which forced him to store all of his belongings—including his schoolwork and daily routine—into a dark room. Everyone thinks Manoj’s disease is one that spreads quickly. Manoj’s pals stopped hanging out with him, he was told not to go near any doors including his school, and he was made to live a life of blind confinement within four walls. However, now in addition to pursuing his diploma at Karanjia ITI College, Manoj is currently doing a part-time job to support his family.
Manoj is an Odia native from Champua Block. He has three sisters: two younger and one older. The younger sister is currently in school, and the older sister is married. Manoj’s mother is a stay-at-home mom, and his father works as a daily wager. The family prospered thanks to the money from Father’s daily salary and Manoj’s part-time job. According to Manoj’s father, he first contracted this disease when he was 10 years old, at which time he was studying in a government school.” Manoj recalls that he was in the fifth grade when he first noticed some red marks on his body, accompanied by slight itching. Initially, he thought they would disappear on their own, but to his dismay, the red rashes grew larger day by day as time passed.”
In society today, there are still various strange beliefs regarding diseases like leprosy, and Manoj’s parents were not exempt from these misconceptions. As the red patches appeared on Manoj’s body, their concern grew. They worried about how society would treat them once they learned about his condition. In Indian society, it is commonly believed that leprosy is a repulsive and contagious disease. If one person has it, it is assumed that the entire family is affected. Leprosy is stigmatized in society as a “curse.” I have seen this disease being used in the form of a ‘curse’. Whenever someone harbors intense hatred towards another, they continue to attribute this disease to them as a ‘curse’. This perception still persists in our society today. And this is still spoken of in our society today.
Manoj made numerous attempts to cover up the rashes with clothing, but he was unable, and the rashes got worse every day. Manoj and his family were doomed to remain under this spell. Manoj’s friends ceased gatherings, and gradually everyone began to avoid him. Manoj was aware that he would have to quit attending school as a result of this disease, and this happened very quickly. Everything went smoothly for a few more days as he was able to conceal all of the rashes, but on the day they appeared, everything changed. Despite his efforts, Manoj struggles to learn, but on that particular day, he decided to skip class because his teachers forbade him from going. They stated, “You have a very dangerous disease, so please stop coming school. Manoj quit studying after that day.
He experienced a lot of pain in his body due to this illness, but the pain he felt from the behavior of his own relatives, neighbors, and friends was even more agonizing. Whenever people visited his house, they would say, “This is a very dangerous disease, he won’t survive for long.” Manoj’s mother says, “People’s words hurt more than the illness itself.” Society, by showing the ‘fear of spreading the disease,’ stopped Manoj from leaving his home. People said, “If you go to see a doctor, it will spread to others, so it’s better to stay at home and try some home remedies.” Hearing all this, the troubles of his parents were increasing. They said, “We must have committed some bad deeds in our past life, that’s why we are being punished like this. It’s better to give him poison.” Manoj’s physical and mental condition was extremely serious. Now, he never left his room. He was completely isolated and sinking into himself more and more.
At that time, Sandhya (currently a community facilitator, aspirer) was working in that village, raising awareness among the community members about education and other related issues, and organizing them. Sandhya explained that while tracking attendance of children in school, she found out that ‘Manoj’ had not been attending school for a long time. Upon inquiry, it was revealed that he had leprosy. Sandhya was aware of the societal stigma associated with this disease. She knew that dispelling these beliefs would not be easy and that it would be even more difficult to remove Manoj from all these prejudices.
ASPIRE has chosen to work on the right to education for children coming from extremely adverse circumstances. It operates at multiple levels, including organizing book provisions, establishing children’s libraries, setting up residential and non-residential bridge course centers to help them bridge their learning gaps, and simultaneously raising awareness and accountability for education within their families and society. ASPIRE is currently assisting 15,00,000 students with their schooling. These figures also include the children who were previously excluded from school because of child labor, child marriage, or discrimination. Manoj is one of those children who was left to die alone by society due to a disease like leprosy.
Sandhya said, ‘When I first met Manoj, there was a little fear in my mind. But later, I thought about what I would do if a family member suffered from this disease. Would I try to help them recover or would I leave them to face death?’ For Sandhya, dealing with the disease was not easy at first. She first battled with herself, then with society. Most of the time, Sandhya attempted to take Manoj to the hospital, but society stopped her, saying that the disease would spread throughout the entire village because of her. Despite these barriers, Sandhya continued to meet with Manoj for months, asking about all his problems and instructing him to learn.
Since many of ASPIRE’s employees and some members of society believe similarly to those in Manoj’s society, ASPIRE regularly holds training sessions to eradicate these mindsets and enhance cognitive abilities. A unique 84-hour training program called “NIMHANS” was offered by ASPIRE to help people comprehend the mental and physical stages of a child. Sandhya was one of the 105 participants in the program.
Sandhya’s consistent meetings with Manoj and his family were instilling confidence in the villagers that this was not a contagious disease. Finally, one day, Sandhya took Manoj and his mother to Champua’s government hospital. There, the doctors advised them to visit the government hospital in the Keonjhar district for better treatment of this disease. After the treatment commenced, a specialist doctor was sent to Manoj’s home, and with the continuous treatment, his condition gradually improved. Manoj’s father, in a serious tone, said, “Many times, the problems aren’t as big as people make them out to be.” He further added, “If I had listened to people earlier, my child wouldn’t be pursuing engineering today.”
Between therapy sessions, ASPIRE continued to pay a lot of attention to Manoj’s schooling. As Manoj mentioned, he used to call Sandhya when his medication ran out. He maintained his connection to school through ASPIRE. Manoj worked hard to complete his higher secondary education with good grades, and he is currently enrolled in Mayurbhanj College’s ITI program. ‘Manoj is more than just an inspiration for his society,’ Sandhya remarked. ‘Despite facing numerous struggles, Manoj never forgot to smile. We should be grateful to ASPIRE for making employees with the ability to alter any kind of dire circumstance, such as Sandhya.
The contrast between the old Manoj and the Manoj of today is immediately apparent to everyone. Manoj is no longer hesitant when conversing or meeting new people, nor does he feel the need to be in private or cover up his rashes with clothing. The society that once forbade Manoj from leaving his room now allows him to move freely between them fearlessly, forging a new destiny for himself. Many thanks also to Sandhya, who not only helped Manoj overcome significant challenges but also eliminated all previous societal barriers that had hindered the Manoj family. ASPIRE is truly proud of its dedicated employees, like Sandhya.
