April 25, 2017
Each month, we’re showcasing the work of one of our members. Here Dr Mary Verghese, the new Executive-Director of The Leprosy Mission Trust India, discusses the challenge of eliminating leprosy in India and how TLMTI is working to do so through community empowerment and more.
Dr Mary Verghese, recently became the Executive-Director of The Leprosy Mission Trust India. As the first female Executive-Director, she describes it is a “defining moment” for the organisation.
“We’ve been working with marginalisation and with social discrimination for so many years, yet in 143 years I think this is the first time we’ve broken the ceiling,” she says.
A medical doctor by training, she joined TLMTI six years ago and admits that she did not know much about leprosy before arriving at the organisation. She points to this as a key challenge in tackling the disease; making people aware of its existence.
“Whether it’s the general public or doctors, almost anyone you talk to, the first question they’ll ask you is ‘is it still there today?'” She explains that this lack of awareness, and the stigma and discrimination around the disease, has made those affected one of the most marginalised groups of people. Her motivation for fighting it stems from this fact.
Among people affected by leprosy, women and girls are triply affected because of their gender. Recounting stories she has come across over the years, Dr Verghese says “it is unbelievable that they are still happening today.”
“There are stories of young girls being affected by leprosy, women and girls being affected by leprosy who become disabled and are abandoned in hospitals by their parents, with some parents believing their children are under a ‘curse.'”
Women are equally affected and face abuse, threat of divorce and abandonment by their families. “Many times women are left in hospitals and the husbands will come many months later, maybe when they have other children or have remarried. These are the realities of life for people affected by leprosy.”
But Dr Verghese explains that there is another face of stigma. There are plenty of cases, she says, of people affected by leprosy living with their families who are very supportive, but the person affected is overcome by self-stigma and is unable to stop blaming themselves for having the disease.
These two faces of stigma are difficult to overcome, she says: “One is getting over the self-stigma, and the other is educating people so that they are aware and stop stigmatising.”
In this sense, education is essential: “It is very important to educate people, both men and women, and to give them a skills set and economic empowerment to be able to assert themselves.”
TLMTI is currently undertaking community based programmes to empower local people. The programmes cover not only those affected by leprosy, but others in the community as well. This, Dr Verghese explains, enables people to develop their skills, seek employment or start their own small businesses and improve standards of living.
TLMTI also works towards policy change. For some time in India, and around the world, leprosy had fallen off the radar, Dr Verghese says. Now, this is changing and the results are slowly being seen. In 2015, TLMTI’s efforts, along with those of other organisations working in the field of leprosy, resulted in the Law Commission of India drafting a report (Report 256) to repeal discriminatory laws against people affected by leprosy.
But despite this progress, she goes on to say that many more areas still need to be addressed. One issue is the lack of awareness among members of the medical professions. Knowledge of treatments has been lost as cases of leprosy declined over the years and many old-hands who used to work on the disease have now retired, making it an area that needs to be looked at, according to Dr Verghese.
Similarly, she believes that patients should be informed where they can be treated and that it available free of charge. These aspects, as well as providing safe water, sanitation and hygiene (WASH) to communities are paramount to stopping leprosy in its tracks, she says.
Although there are many challenges ahead, Dr Verghese says that “in India in the last two years, we are putting in our efforts for the last mile for tackling leprosy.”
All of what TLMTI is doing is geared towards societal change, she explains, as they envision “people affected by leprosy living with dignity in a transformed, inclusive society that has overcome leprosy.”
Find out more about The Leprosy Mission Trust India.