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Leprosy is a neglected disability in India: Rights activist

Jul 06, 2015

There are 747 recognised or registered colonies of people affected by leprosy in India.

New Delhi: Disability rights activist Javed Abidi said that leprosy colonies are a blot on India. It’s a matter of shame that people with leprosy are still shunned in leprosy colonies denying them basic human rights,” he said.

“These colonies are a blot on our country. We have to get rid of the social stigma and exclusion these people face. We don't want them to suffer silently without any social protection. Leprosy is a neglected disability and needs to be tackled like other disabilities,” says Javed Abidi, Global Chair, Disabled People’s International, an international network of disability rights organisations.

Taking a serious note of this, the Disabled People’s International (DPI), has decided to fully include people with leprosy in the disability rights movement, thereby, ensuring their mainstreaming and better protection of their rights.

“Our laws are not conducive for mainstreaming or rehabilitating people affected by leprosy. We therefore want to include this ‘side-lined’ community into the disability rights movement in India,” adds Abidi.

Leprosy is a disease which is widely attached to stigma and social exclusion. People affected by leprosy are forced to live in isolated settlements that are mostly found at the outskirts of a city, town or a village. There are 747 recognized or registered colonies of people affected by leprosy in India.

India is one of the high endemic countries of leprosy in the world. Even though the country achieved its elimination goal in 2005 (0.95/10,000 population), it still records one of the highest occurrences of leprosy, constituting more than 50% of people affected by leprosy worldwide.

In the year 2011-12, India recorded 1.27 lakh leprosy cases, even though 32 states and Union Territories had achieved leprosy elimination.

The top five states in India which have the highest number of leprosy cases recorded in 2012-13 are, Uttar Pradesh (24,222 cases), Bihar (22,001 cases), Maharashtra (18,715 cases), West Bengal (11,683 cases) and Gujarat (9,010 cases).

There are many laws in the country that can be used against people affected by leprosy. These people can be divorced, denied property, driving license or even train travel on the basis of these archaic laws.

While leprosy is completely curable when diagnosed early, people with leprosy face the disease in varying degrees and their exclusion only limits them from getting proper cure and rehabilitation. Studies suggest that community based rehabilitation is effective in addressing problems of those affected by leprosy. However, Indian laws completely ignore these facts, and often don't let them get into the mainstream.

Earlier this year, DPI, in collaboration with The Nippon Foundation (TNF) and National Centre for Promotion of Employment for Disabled People (NCPEDP) undertook an initiative to include the voices of people affected by leprosy in the global disability movement.

DPI being the only cross-disability organization in the world, aims to include people affected by leprosy in the global disability movement, including India.

It was decided that the leprosy and disability movements would together launch a major campaign to include a) repealing of all the discriminatory laws; b)uniform pension across States; c) legal land rights for residents of leprosy colonies; d)reservation in education for leprosy affected people and their children in higher education; and e) reservation in employment.

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