The United Nations (UN) Human Rights Council heard testimony this week on how leprosy affects women in India, and how it can be overcome despite the prejudice and discrimination faced by those affected.
Rachna Kumari, who works for international leprosy charity Lepra in Bihar, was first diagnosed with leprosy shortly after her marriage. Tragedy struck when her husband passed away, leaving her with two small children and parents-in-law who were fearful and dismissive of her due to prejudice towards leprosy. They denied her support and her rights to a share of her husband’s estate, freezing her out of the family.
Rachna was forced to leave her children to try and seek work in a larger city. This proved difficult due to the discrimination she faced, not only due to her gender but also her illness which is curable but is often misunderstood and feared.
Of this time, Rachna said:
“Despite the stigma I faced, what hurt me the most was the fact that I wasn’t there for my children when they needed me most. I couldn’t hug them, because of the fear that they would contract this disease. Lack of awareness has led me to miss out on crucial years of their childhood.”
Rachna was finally able to access Multi-Drug-Therapy (MDT) which cured her leprosy, giving her a new perspective on life. She decided that she use her ‘second chance’ to help women like her, and began to work for Lepra. In this role, she visits communities in Bihar working to empower women to seek treatment before disabilities could take hold and helping them to know their rights when the disease has affected them physically.
Working for Lepra has opened up a new world to Rachna, in which her views and experiences are valued and she has become a respected figure. She regularly attends international conferences to speak on leprosy and women’s rights and in 2017 was invited to join the International Federation of Anti-Leprosy Associations (ILEP) Advisory Board.
Her role has given her the opportunity to share her story on a wider stage and help to guide member organisations in how to best help people facing the issues of leprosy and to empower women to overcome them.
Rachna was invited to speak to the UN Human Rights Council this week, sharing not only her story but also raising awareness of the need for more to be done in India and around the world for the rights of people affected by leprosy.
“In India, the Supreme court has directed the centre and states to take steps to fight laws that discriminate against those affected by leprosy. However, there are various stakeholders who do not understand these issues. Some progress has been made but we need to work more on raising awareness about the cure so that there is no discrimination against people affected by leprosy. Treatment of leprosy should be combined into the general healthcare in order to promote inclusion.”
Indeed, despite India repealing laws en masse in 2018, prejudice and discrimination remain ingrained in the minds of many people and local governments. Leprosy is no longer legally a reason for divorce for example, yet many families still discriminate in the same way Rachna faced.
Every day 600 men, women and children will be diagnosed with leprosy, with more than 50 of these being children. Leprosy affects millions of the most vulnerable people in the world, causing life-changing disabilities and attracting extreme prejudice and discrimination. But there is a cure.
Lepra works to beat leprosy in India, Bangladesh and Mozambique by finding, diagnosing and treating people affected by the disease.