Leprosy cured/affected still begging for want of rehabilitation measures & non-acceptance of society

Give leprosy-affected a chance: Times of India


IANS, 31 January 2010, 03:05pm IST

"Maataji, Babuji, namastey, namastey!", he greets people brightly at the traffic light, a smile lighting up his creased face. Kondasamy is one 31st Jan, World Leprosy Day (Getty Images) among the hundred leprosy patients in Delhi.

If Kondasamy, in his 30s, has ever been pained by noticing people shrink away when he puts out his disfigured hand for alms, then he has chosen to hide it behind his ever cheerful veneer.

"Tum ko uparwala banaye rakhe (may the almighty bless you)," he says in humble thanksgiving to anyone who gingerly drops a coin into the aluminium can - taking great care to ensure they do not touch the utensil - dangling from his wrist.

Kondasamy, who belongs to Bangalore, says he is cured of the disease. "I am cured. I was cured 15 years ago," he says cheerfully.

Kondasamy begs for a living to feed his family - his wife, also a cured leprosy patient, and his two-year-old daughter, who does not have the disease. He stays at a Kusht Ashram (leprosy home) in south Delhi run by the government, where there are many others like him.

"Yes, we have doctors coming to check us and I take medicines," he says. His wife stays at home to look after the child. Like Kondasamy, some of the other inmates of the ashram go out to beg.

In India, the recorded cases of leprosy have fallen from 57.6 per 1,000 people in 1980-81 to less than one per 10,000 in December 2005, which is considered the level of elimination by the health ministry as short of total eradication.

One can spot leprosy patients outside major temples in the capital, including the Hanuman temple in Connaught Place and the Sai Baba temple in south Delhi's Lodhi Colony. They sit on wheelchairs, with their belongings - all stuffed into plastic packets hanging from the chair. The wheelchair is their home - come winter, summer or rain. For protection against inclement weather, they have a thick plastic sheet to cover themselves.

And on days when there is sufficient water, like when a pipe nearby has sprung a leak, one can see them squatting near the water source, soaping themselves and enjoying a bath, by the roadside.

Food is not a problem for them if they are positioned outside affluent temples. They often get to savour platterfuls of puri, halwa, aloo subzi - all distributed by the devout on special auspicious days - notably Tuesdays and Saturdays. On other days, they get enough alms to buy food.

Leprosy (also known as Hansen's disease) is caused by a bacillus, Mycobacterium leprae. According to the World Health Organisation, the bacillus multiplies very slowly and the incubation period of the disease is about five years. Symptoms can take as long as 20 years to appear. Leprosy is not highly infectious. It is transmitted via droplets, from the nose and mouth, during close and frequent contacts with untreated cases.

According to the International Federation of Anti-Leprosy Associations (ILEP), a federation of 15 non-governmental anti-leprosy organisations, based in London, India currently has about 64 percent of all the new leprosy cases in the world, followed by Brazil with about 17 percent, then Indonesia with about 7 percent. Other countries reporting more than 1,000 new cases in 2006 include: Angola, Bangladesh, China, The Democratic Republic of Congo, Madagascar, Myanmar, Nepal, Nigeria, The Philippines, Sri Lanka and Tanzania.

A cure for leprosy was identified in the form of Multi Drug Therapy (MDT) that came into wide use from 1982 following recommendations of WHO.

ILEP says: "Many of those cured of the disease will have to live with the consequences of leprosy. It is estimated that probably at least 3 million people are living with some permanent disability due to leprosy, although the exact figure is unknown."

In the national capital, MESH (Maximising Employment to Serve the Handicapped), an NGO working with 40 groups of disabled and leprosy affected people for their rehabilitation, trains them in different craft skills.

The leprosy affected or their children are trained in weaving, designing, woodcraft and toy-making. The end products - elegant bedspreads, table linen, cloth bags, stuffed toys and cards are sold at their outlet in Delhi and Hyderabad.

MESH held an exhibition and sale of handicrafts made by leprosy affected people at their south Delhi outlet Saturday, and also screened a documentary "Towards Dawn".

Exclusionary practices continues to be forced upon those who acquired disability due to leprosy

Dear Friends,

I am startled with the news Separate residential unit to be set up for lepers, disabled, hope you too would share my concern.

The systemic apartheid meted out to the disabled especially those who acquired disability due to leprosy in the past continues even today. Its well known fact that with MDT (a new technique to treat leprosy), Leprosy is fully curable but many of our laws continue to stigmatize them and discriminate against without any medical or social basis!

Matrimonial laws still allow divorce on the ground of Leprosy. Leprosy cured are not allowed in the public places, temples etc.

They are not allowed to even contest elections or hold municipal posts in Orisa. The candidate Mr.Dhirendra Pandua had challenged the decision incurring disqualification to hold the post of Councilor and chairperson in Balasore municipality on the ground of him being a leprosy patient. The appeal went to Supreme Court who opined that a leprosy patient cannot contest a civic poll or hold the post of a Councilor or Chairperson of a municipality.

The apex court's verdict in September 2008 upheld the decisions of the Election Tribunal and the Orissa High Court that had upheld the provisions of the Orissa Municipal Act, which disqualify a leprosy patient from holding such posts.

Holding that these provisions are not discriminatory and violative of Article 14 of the Constitution, a Bench comprising Justices C K Thakker and D K Jain said "We do not find any infirmity or illegality in the judgement warranting interference."

The Supreme Court, though agreed that now with aggressive medication a patient may fully be cured of the disease, yet they did not want to take role of legislature and pass any order indicating existence of discrimination. They could have held the law to be against Article 14 but choose to be silent. The wisdom of Judges thought it prudent to leave it to legislature to amend the laws in light of new technology and development in science. Sad part is that Orissa legislature has not risen up to the occassion and the discriminatory law continues!

I can congratulate Maharashtra legislature who have become the first state to repeal the Leper Act of 1898 and currently all Leprosy Affected Persons can participate in election process on an equal basis with others.

However, the news of planning an exclusionary village for the leprosy cured with some visually and physically disabled persons in Maharashtra is something astonishing.

Despite advancement in the medical science and complete control over Leprosy which was considered as "Maharog" once upon a time, there has been no efforts to raise awareness in the society in general and change the laws that openly discriminate against the leprosy cured.

The Govt. of India has put programmes in place for containing the spread of leprosy and results are showing with the increased awareness, however, the recent statement of the Union Health Minister Mr. Gulam Nabi Azad doesn't inspire confidence in citizens for it indicates Govt's failure to reach out to the patients with infected form of leprosy. The data indicates reducing figures but we are yet to reach zero tolerance stage.

But this from no angle justifies continuance of discriminatory laws which are reflections of the mindsets of the society surely repugnant to human rights philosophy and equality that Indian constitution grants to each citizen of India.

Even disability was considered as a bane, a result of karmas and thus the disabled were often shunned out of society with no rights and they were often left to survive on alms. Much water has passed since then. Social model of disability seems to be replacing the Medical model and we are moving towards a rights based model of society.

However, the leprosy cured disabled continues to be discriminated even today. Even within the disability sector, they have been marginalised due to lack of awareness. I was stuck with a question posed by one gentleman with disability!, "why lepers in disabled category?" Ignorance! I said to myself and then went over explaining him, prevails! But should we allow this to continue?

We need larger sensitization and support of medical community to spread the word to shackle the age-old beliefs about leprosy.

I feel leprosy cured have failed to reap the benefits of the Persons with Disabilities Act till date, despite bring included in the definition of Disability well in 1995 itself.

This needs to change and the disability sector needs to intervene to discourage this discrimination. Can we start from ourselves?


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Warm regards,

Subhash Chandra Vashishth
Advocate-Disability Rights
Mobile: +91 (11) 9811125521