Restoring dignity: on stigma attached to leprosy

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Context:

  • The time has come to end the stigma and discrimination against the leprosy-affected.

About Leprosy:

  • Leprosy is a long-term infection by the bacterium Mycobacterium leprae or Mycobacterium lepromatosis.
  • Initially, infections are without symptoms and typically remain this way for 5 to 20 years.
  • Symptoms that develop include granulomas of the nerves, respiratory tract, skin, and eyes.
  • This may result in a lack of ability to feel pain, which can lead to the loss of parts of extremities due to repeated injuries or infection due to unnoticed wounds. Weakness and poor eyesight may also be present.

Facts about Leprosy:

  • Leprosy is one of the World’s oldest diseases with India accounting to 60% of the annual new cases.
  • In 2005, it was officially declared eliminated as a public health concern in India. This was when the new cases fell to less than 1 per 10,000. Yet India accounts for the largest number of leprosy affected people in the world.

Current Situation:

  • Problems like lack of awareness, social stigma, myths and socio-cultural problems in the society.
  • The colonial laws that predate leprosy eradication programmes and medical advancements remain on the statute book.
  • These were unconscionably discriminatory from the beginning, but even in independent India, where the law has been an instrument for social change, the process of removing them has been bafflingly slow.
  • The Lepers Act of 1898 was repealed two years ago.
  • The time has come to end the stigma and discrimination against the leprosy-affected.

What actions have been taken so far?

  • Two recent developments hold out hope.
  1. The introduction of a Bill in Parliament to remove leprosy as a ground for seeking divorce or legal separation from one’s spouse.
  2. The Supreme Court asking the Centre whether it would bring in a positive law conferring rights and benefits on persons with leprosy and deeming as repealed all Acts and rules that perpetuated the stigma associated with it.
  • The Supreme Court has been hearing a writ petition by the Vidhi Centre for Legal Policy seeking to uphold the fundamental rights of people with leprosy and the repeal of discriminatory laws against them.
  • The court is seeking to find legal means to ensure a life of dignity for them.

The 256th Report of the Law Commission

  • The report came up with a number of suggestions, including the repeal of discriminatory legal provisions.
  • It listed for abolition personal laws and Acts on beggary.
  • The report cited the UN General Assembly resolution of 2010 on the elimination of discrimination against persons with leprosy.
  • The resolution sought the abolition of laws, rules, regulations, customs and practices that amounted to discrimination, and wanted countries to promote the understanding that leprosy is not easily communicable and is curable.

Way forward:

  • It is time for concerted action to end the firmly established discrimination in law and society against those afflicted by it.
  • The Personal Laws (Amendment) Bill, 2018, is only a small step. An affirmative action law that recognises the rights of those affected and promotes their social inclusion will serve a larger purpose.
  • The culture of exclusion that most of them face has to be ended.
  • Misconceptions about the disease need to be removed and the belief that physical segregation of patients is necessary has to be dispelled.

The campaign to end discrimination against those afflicted, and combating the stigma associated with it, is decades old. While governments may have to handle the legislative part, society has an even larger role to play. It is possible to end discrimination by law, but stigma requires more than legal efforts to eliminate.