Afsana Rashid of Kashmir unearths the shameful conduct of people towards healthy children of those suffering from leprosy.
As India continues to make confident strides in the fields of healthcare and medical technology, age-old attitudes have remained in a state of flux, with the result that India remains a nation of contrasts in more ways than one. One such contrast is her people’s outlook to a long-dreaded illness: leprosy.
Despite the WHO and India declaring that leprosy had been “eliminated as a public health problem” in 2005, India remains one of nine countries with the highest leprosy patients in the world. 64% of all new leprosy cases registered worldwide are from India. Since the mid-1990s, the Indian government has integrated leprosy treatment in the regular health service. It is, therefore, now possible to get treatment for leprosy at almost every health station. The social stigma associated with the disease, however, remains a formidable challenge.
In the picturesque city of Srinagar, on the banks of Nageen Lake, stands the Barhar Leper Hospital. In a bid to make progressive efforts towards tackling the social stigma faced by the patients, administrators and local health officials encouraged patients at the leper hospital, a few decades ago, to marry and start life afresh. It was a dream come true for many young couples, who used the opportunity to lead a near-normal life and build towards their future and that of their children.
However, what started as a rehabilitation success story is now turning indelibly sour. The afflicted parents continued to be looked after by the State with the implementation of suitable programmes. These government schemes could not rid their children – youngsters now seeking to build their own lives – of the social stigma associated with their parents, since they grew up with the dreaded tag of being residents of Barhar leper colony. Although healthy and free of the illness, these youth are not accepted in employment and elsewhere for fear of ‘catching the disease’.
Not supported by any special government schemes like their parents were, these youth face an impasse not of their making. Many have been working since childhood since their parents were unable to earn a living. “These marriages were not the marriages of our parents but the sins they were ordered into by society. They did not consider how the young would live when their parents are purely dependent on charity”, the boys reflect bitterly.
Sharing his own experience, Fayaz Ahmad (name changed), narrates, “I was working as a salesman but the moment my employer realized that I am from Barhar, he asked me to leave. He would not let me return to that workplace.” Others have similar experiences to share. “This is the reason why we do not disclose our identities when we go for private tuition or any educational institution or workplace. We are looked down upon by society. Don’t we have the right to live with dignity?” Questions Masood Ahmad (name changed), also a resident of the leper colony, “We are also creatures of the same creator then why this indifference? Is it our fault that we have been born in a leper colony?”
In a nearby compound, a group of boys in a jovial mood turn grave when queried about their lives. “We are a healthy generation”, they point out. “The government has adopted our parents but not us. Our life is made miserable. The government disowns us and society is reluctant to accept us as one of their own. In such circumstances, where shall we seek refuge? We are alien in our own land.”
Elders among the community view these marriages as a “burden” on the younger generation and fear that this desperation, based on genuine grievances, could lead to unwanted outcomes. Warns Shaheena, a social worker, “The desperation of these people would definitely germinate evil in society if not guided and treated properly.”
Indeed, not everyone takes a passive stand on the injustice they face. Manzoor Ahmad and Latief Ahmad, both residents of the leper colony, are forceful about the tight spot they find themselves in. “We demand that the state government provide us with plots of land and employment. We are considered as ‘untouchables’ in society. People try to avoid us. Who will come to our rescue under such circumstances?”
Despite the launch of several schemes/grant-in-aid to beneficiaries by various departments of the State and Central government under Women and Child development, Handicrafts promotion and other empowerment programmes, few have stepped forward to support the Barhar residents. As everyone turns away, these youth have yet to make a breakthrough to a stigma-free life.