Leprosy colonies trapped in discrimination, poverty

| | Indore
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Leprosy colonies trapped in discrimination, poverty

Tuesday, 27 November 2018 | Archana Jyoti | Indore

When the Supreme Court recently noted that a majority of the leprosy-affected people and their families is living a marginalised life-deprived of basic facilities and rehabilitation programmes, Sarang Gaydane and Yadavrao Andeshwar from Indore in Madhya Pradesh could easily relate to the observation.

And so did their ilk from the Sant Dnyaneshwar Kusht Ashram in Indore's Baanganga area, where only 11 people out of the 300 actually have the disease. However, despite being completely cured, they and their family members are forced to live as outcasts, face discrimination and lead a sub-standard life.

While India declared elimination of leprosy in 2005 itself and diverted funds to general health system, the fact that there still exist 700 plus colonies spread across the country, and 33 in this Hindi heartland itself, ironically, reflects on Government's short-sightedness in handling this debilitating health condition caused by bacteria.

Gaydane, who also heads the State Association of Persons Affected by Leprosy (APAL), is lucky as he earns his livelihood through a photo-copier shop run with the help of an NGO, Sasakawa- India Leprosy Foundation (SILF). However, not all are as fortunate as him.

He said, "We had been seeking an increase in monthly pension from present Rs 300 to at least Rs 2,000 or Rs 3,000 as is being done in many States. The paltry sum of Rs 300 has forced even many of those cured to resort to begging or doing odd jobs for livelihood."

They cannot even take jobs as agricultural labourers due to their physical disability. Leprosy attacks nerve endings, destroying the ability to feel pain and injury, which makes patients susceptible to ulcers and infections. Untreated, leprosy can cause progressive and permanent damage to the skin, nerves, eyes  and the 'clawing' of hands and feet.

A frail 50-year-old Noorjahan, mother of two sons and who is leprosy-cured, is a worried lot. "I have to beg to pay the education fee of my kids  as Rs 300 pension is not enough. The Government should increase the amount so that we can give quality higher education to our children. We do not want our children to repeat our lives."

Many do not have disability cards because of verification issues. Though the Government has provided alternate methods of verification for people like them, the order is yet to be implemented at the ground level in many districts. "Every month, for pension and ration, so many of our people have to struggle during the fingerprint verfication," said Andeshwar.

At least ten people have not got ration for the last six months, said Basant Bhaloerao whose wife also suffers from leprosy. " Also, as most of the inhabitants settled here have migrated from different States, they do not know about their castes, preventing them from availing Government loan," said Gaydane.

The habitants also complained of contaminated water, poor civic amenities at the colonies besides Government apathy in implementing rehabilitation programme for them. Many people suffer from serious foot ulcers, eye problems and other leprosy-related complications, for which they have to travel far off hospitals for treatment.  The medical attention is a rare sight while the much-hyped Leprosy detection Survey being conducted by the Central Government is an "eye-wash, they alleged.

Vineeta Shanker, Executive Director, SILF rued that while India is in the race to become one of the fastest economies in the world,  sadly a section of its citizens continue to face scourge of  rejection and discrimination. Being poor man's disease, leprosy doesn't seem to be priority for the Government.

India still has large numbers of new cases and accounts for the highest global burden of leprosy.

 "Though the multi-drug therapy (MDT ) is free in all Government hospitals, there are not sufficient funds for ulcer care and bandaging, and for public awareness and society sensitisation. Society should be made aware that there is an effective treatment that can completely cure the crippling disease," she asserted, pinning hopes on the recent Apex Court order.

"The court has shown remarkable and laudable sensitivity by going beyond the elimination of the disease and focusing on those already affected and excluded. Community based economic rehabilitation and prevention of discrimination in schools are necessary to not only take care of those who have been affected and ostracised but also of their children who suffer even when they don't have the disease," she explained.

Tehseen Zaidi,  Communication Manager,  SILF added that rehabilitation programmes like saree-shops and tailoring units in the selected colonies across the country including in Madhya Pradesh are some of the measures we are taking to make them self-reliant.

"Also, holding events from time to time, 'Youth against Leprosy' festival, being the recent one at the Oriental University in Indore where we reached out to youths are aimed to encourage their main-streaming," she said. According to the reports,  only 543 districts of the total 642 districts in the country has achieved the WHO-required prevalence rate of less than one case of leprosy for 10,000 persons.

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