November 2, 2017
Jennifer Mangeard-Lourme, Programmes Officer for India shares how prejudice damages the lives of those affected by leprosy.
On my first visit to our projects in India last year, I got chatting to a flight attendant who became increasingly concerned when I told him I was going to Bihar to support people affected by leprosy. He told me not to go, to stay away from people affected by the disease and when I departed the plane he whispered, “be careful” to me, with the most genuine look of unease.
I did go to Bihar and Odisha afterwards, where I quickly learned why the steward was worried. Poverty, insecurity and social isolation are just some of the issues people living with leprosy are faced with. It was extremely hard to witness. But, contrary to the steward’s thoughts, it helped me to understand that this was exactly where I needed to be.
Leprosy often affects those who are most vulnerable, who live in poverty in the developing world. These people aren’t represented how they should be in national statistics. They become invisible, unaccounted for and they are often left to deal with the severe consequences alone.
Today, receiving the cure only solves part of the problem. Leprosy never leaves you in peace – it chases you with ulcers, infections, disability, depression and anxiety. Stigma often means that people hide their symptoms, many face issues such as divorce, exclusion and some are even cast out of their communities.
Leprosy carries little sense of urgency for the authorities, which is perhaps due to its progressive nature and the fact that long-term effects often only arise after years without treatment. It is a sad reality for the people who live with this disease. They manage to live on despite pain, disability and stigma, which, in mainstream society, makes them a lesser priority to help.
During my visit, I was humbled by the efforts and intelligence that is going into the fight against leprosy. I met some very courageous people on my travels. A husband who supported his wife in getting treatment where others would have divorced her, two young girls at a reconstructive surgery clinic developing a friendship, a mother who has cooked her son’s every meal for the past 20 years despite her severe disability – the list goes on.
The battle against leprosy has not yet been won and it’s affecting too many people in our world today. It goes to show that many still struggle to relate and care for the most vulnerable of us and for this to change, we need to innovate, collaborate and advocate for the people who need it most.
I will keep going back to Bihar and some of the other most disadvantaged areas of India, and on the way there, I will try to convince every worried flight attendant I meet to come along with me.