Pratham 12:52:00 PM
“We are the local outcasts. We have been pushed out of our communities and made to live here instead.” – Leprosy affected victims speak
In September 2016, when I visited one of the leprosy colonies in Chhattisgarh, the people there were expressing similar experiences. I witnessed the silent oppression and sadness in these colonies.
Contrary to popular belief, leprosy is one of the least infectious diseases as nearly everyone has some measure of natural resistance against it. It is one of the leading causes of permanent disability in the world and is primarily a disease prevalent in communities who live in extreme poverty. It currently affects approximately a quarter of million people across the world, but the majority of these cases are found in India. Leprosy is believed to be dated back to biblical and pre-biblical times. India is currently running one of the largest leprosy eradication programs in the world, called NLEP: National Leprosy Eradication Program. This issue can be majorly seen in 13 states of India, focussed mostly in the north and central India.
World Health Organisation (WHO) and other research reports state that 58.85% of new leprosy cases in the world are in India. In 2013-14, 1.27 lakhs new cases of leprosy were diagnosed.
Social stigma associated with leprosy is forcing leprosy-affected people to stay away from their village and settle in colonies demarcated for them. The social stigma attached to the disease combined with the fact that it seems to be prevalent among those that are already disadvantaged makes those affected by it doubly ostracised from their own communities.People are coming from different parts of India and living together by building their own small huts or tents, struggling to get access to the basic amenities. It is sad to see how they’re being treated as untouchables in most places.
In fact, leprosy-affected people are not only facing social discrimination, but they are also deprived of basic legal rights. Laws in the states of Chhattisgarh, Rajasthan, Madhya Pradesh, Andhra Pradesh, and Orissa prohibit leprosy patients from running for representation at local elections. These laws have been supported by the national government, as evidenced by the Supreme Court of India which has upheld a ruling by the State of Orissa prohibiting leprosy patients from participating in local elections. Other laws include the Indian Rail Act of 1990 which prohibits leprosy patients from travelling by train; the Motor Vehicle Act of 1939 which restricts leprosy patients from obtaining a driving license.
There are some organisations like Pratham taking initiatives to bring Leprosy-affected people to the mainstream. Pratham Institute, the vocational skilling wing of Pratham, has trained nearly 200 candidates since 2013-14 with support from Sasakawa India Leprosy Foundation. Pratham is covering Maharashtra, Chhattisgarh, Madhya Pradesh and Bihar under our partnership with Sasakawa. The youth are trained in different trades such as healthcare, hospitality and beauty programs. Post the successful completion of training; candidates who wish to get employed receive placement support as well.
In the course of my journey in Chattisgarh, I met Shiv. Shiv is from Janjgirchampa, Bilaspur (Chattisgarh), one of the biggest leprosy-affected people’s colonies in the state. His father who used to be the sole earning member is a sweeper and earns barely Rs. 3,000 every month. Shiv did not have an opportunity to further his education post the completion of his 9th standard and was forced to work elsewhere to meet the family’s expenses.
This is when Sasakawa India Leprosy Foundation in partnership with Pratham Education Foundation started vocational skilling courses specifically aimed at youth like Shiv. He chose to start training in the hospitality trade at Pratham’s centre in Dhamtari, Chattisgarh. This opportunity opened many doors for him, as he was able to finish his training successfully and secured a job at NovotelImagica, an international chain of hotels and a 5-star rated property in Maharashtra. He earns 15,000 rupees per month and avails complementary food and accommodation. This seems to be a small effort but the outcome of this is commendable and a life-changing opportunity for someone like Shiv.
There is still a huge need for support for these affected people which need to be addressed as soon as possible. The social stigma associated with leprosy has to be eradicated, as leprosy is a curable disease and awareness of this has to reach everyone so that the victims do not suffer. I believe, more work needs to go into changing the mindsets of people, so that these people do not remain victims of not just a disease but also social exclusion.
- Shweta Hegde,
Former Program Manager,
- Shweta Hegde,
Former Program Manager,