Thursday, June 26, 2014
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Gandhiji giving massage,to a leper patient, the Sanskrit scholar Parchure Shastri, at Sevagram Ashram in 1940. Source: Wikimedia Commons

Suresh Dhongde is a mascot of successful leprosy treatment. Talking to GoI Monitor, he recounts the journey so far and fumes at various laws which still stigmatise leprosy patients

HOW CAN access to education and good healthcare change somebody's life is evident from Suresh Dhongde's success. At one point of time he was staring at possibility of a life wasted. Today, the 35-year-old is a proud recipient of the national award for being a role model in overcoming leprosy. Not only is he helping other leprosy-affected people join mainstream, but also trying to break well-entrenched stereotypes related to the disease. 

Q. How did you deal with the trauma of being affected by leprosy?

I was born in a small village Bhalegaon of Buldhana district in Maharashtra. It was at the age of 16 that I started getting numb skin patches on the body. While the local doctor failed to ascertain the reason, village elders suggested sacrifice of a hen to ward off the evil spirits. However, the patches kept spreading. Taunts of the classmates and fellow villagers forced me to quit school. Consultation with a doctor in the district town 70 km away led to diagnosis of leprosy. A two year course of medicine was recommended but long distance travel and lack of money meant there were frequent gaps in the medication. Meanwhile, depression gripped me as I imagined life as a leper. I had seen a few men outside a temple with amputated fingers and realised that this will be my fate too.

In October 1998, the infection reached such a state that my whole body cringed with extreme pain. I was rushed to the leprosy hospital in Pune where the doctors gave no hope of survival. The nerve damage started turning my fingers inside out. However, my will to live and good medical care helped. I lived in the hospital for two and a half years and regular physiotherapy also returned sensation to the fingers. 

Q. How did you realise your true potential?

To avail free stay at the hospital, it was mandatory for the inmates to work. Soon, I was administering medicines and injections to other patients and in no time became the ward incharge. But despite the improvement in the physical condition, I was not yet sure about my future as an uneducated leprosy patient in the outside world. I decided not to go back to my village. A shift in circumstances came when I was sent for a six-month computer course at an institute run by the Leprosy Mission Trust at Nashik in 2001. There, I also worked as an office boy earning a stipend of Rs 500 every month. What really changed my attitude was when I saw several leprosy patients getting educated. 

Suresh Dhongde got the national award for being a role model in overcoming leprosy.

With financial help from the Leprosy Mission, I started attending Class XII at a nearby college on Saturdays. The hardwork paid off and I passed with first division. The Leprosy Mission office promoted me as a computer teacher and also funded graduation studies. In the evenings, I started teaching computers at a juvenile detention home. Despite such a busy schedule, I topped the college and rose to the position of office assistant in my organisation. Meanwhile, my father passed away and the responsibility of three younger sisters and a brother fell on me. Being educated and having a job came to great help. So from a boy with no promising future, I became the sole breadwinner of my family.

Q. Did the stigma of leprosy affect your life in any manner?

The stigma attached with leprosy is very deep rooted. When it came to question of marriage, around 30 prospective matches rejected me because of my past. Finally, I got married to a former colleague who had also overcome leprosy. Today, we have a daughter who is completely healthy. Even to get my sisters married, I had to zero down on men related to medical field as they are the ones who well understand that leprosy is treatable and does not run in family. 

The stigma attached with leprosy is very deep rooted. When it came to question of marriage, around 30 prospective matches rejected me because of my past. 

Q. You were given the national award in December 2013. What’s your next aim?
 
My fight is against several laws and rules which discriminate against the leprosy-affected. Though the Leprosy Act 1898 has provisions against discrimination to leprosy patients, legislations in several states prevent patients from obtaining a driving licence and travelling in trains. Certain laws bar them from contesting for local body elections, they have to pay double than normal premium for insurance policies and several marriage laws make contracting leprosy grounds for divorce. These rules were made when there was no cure for leprosy. Today, how will you justify them? Going by them, leprosy seems like a crime in India.

I am now working on a campaign against misconceptions regarding leprosy and have contacted some former patients who have made it big in life. Among them are national award winners, sarpanches and sportspersons. We want to bring home the message that leprosy is completely treatable and there's no ground for discrimination whether socially, politically or judicially. 

Though the Leprosy Act 1898 has provisions against discrimination to leprosy patients, legislations in several states prevent patients from obtaining a driving licence and travelling in trains. Certain laws bar them from contesting for local body elections, they have to pay double than normal premium for insurance policies and several marriage laws make contracting leprosy grounds for divorce. 

Q. What about your professional life?

I have done MBA, MA (Political Science) and Masters in Social Work thanks to support of the Leprosy Mission. I am currently working as project manager with The Leprosy Mission at Amravati and also pursuing a Ph.D in social work besides doing a diploma in mechanical engineering. I want to go back to the institute from where I restarted my education as principal. I will be able to serve leprosy-affected children better since the decision power will rest with me. 

Though I have got a waiver from attending the college, I go for four hours of tuition besides nine hours of regular duty which includes field visits to Melghat area where I directly work with around 590 disabled persons. I hope the hard work pays off.

Do you have any additional information related to laws against leprosy? Please post in comments section.

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