Issues Faced by People Affected by Leprosy
[Stigma is a negative opinion or judgement held against a person or group of people who are ‘different’ from the norm. When stigma is acted upon these are acts of discrimination. Stigma and discrimination are linked. Stigmatizing thoughts can lead a person to act or behave in a way that denies services or entitlements to another person.]
Even today when leprosy is curable, the age old stigma attached to it has not been cured. The stigma is a reality in the lives of the people affected with leprosy that upsets their physical, psychological, social and economical well-being.
Lack of knowledge and information, age old beliefs, fear and shame have resulted in stigma of leprosy. It results in irrational behavior towards people affected by leprosy. People still believe that leprosy is a divine punishment for past sins and immoral behaviour. Those with leprosy are avoided as they are seen as sinful, and those around them do not want to incur God’s wrath. Since cure for leprosy was not available in the past, contracting leprosy meant life of disability and disfigurement and sure death. Behind the ostracism of those with leprosy and their family members also lies the fear of infection. Leprosy is still believed to be a hereditary disease. Even educated and respected persons can become victims of misconceptions about leprosy. The classic image of a person with disfigured body and bandages; reinforces this belief of physical uncleanliness and moral impurity, thus justifying the ostracisation and discrimination.
People affected by leprosy are often ostracised and prevented from accessing community resources (e.g. water) and are excluded from festivals and community gatherings. They are denied education, employment and often lose the freedom to marry a ‘normal’ person. Fear of stigma and discrimination prevents people with leprosy seeking medical treatment for fear of the news going out of the house. They also face discrimination at the hands of health workers, doctors and medical practitioners.
The stigma and discrimination extends to the family members as well. They are treated in a similar way and not allowed to function freely in the society. Therefore many families reject the person affected by leprosy for fear of exclusion thus leaving them without family, home and social support networks.
As a result of stigma and discrimination people affected by leprosy often experience a loss of self esteem and dignity and feel fear, shame, hopelessness and guilt. Leprosy often affects the poorest and most marginalized communities who have a history of powerlessness, discrimination and lack of access to their rights and therefore have limited capacity to defend their rights and challenge stigma.
In India, there are several laws discriminating against people affected by leprosy. The British in colonial India passed the ‘Lepers Act, 1898’ which segregated leprosy patients to control spreading of leprosy. With Multi Drug Therapy (MDT) proving cure to leprosy completely, the law was repealed in 1985. Ironically, many laws that were framed on the basis of the ‘Lepers Act, 1898’ are still in force, and they continue to discriminate against people affected by leprosy. There are some laws that directly discriminate against people affected by leprosy. It is pertinent to note that these laws were passed when there was no cure for leprosy. Now that leprosy is completely curable with MDT, there is no justification for these discriminatory laws to exist.
Christian, Islamic, Hindu, Buddhist and other religious texts negatively portray leprosy as divine punishment for the sinful and immoral behaviour of the person with leprosy[ii]. Negative images of leprosy in religious texts are used to legitimize stigma and discrimination against people affected by leprosy in modern society.
[i] Sanchar Se Lanchan Se Mukti (Getting rid of stigma through communication),Centre for Research and Education, Hyderabad and Bhopal (2006); Report of National Consultation on Advocacy to Address Anti-Leprosy Legislation in India, February 5-6, 2009, The Leprosy Mission Trust, India; Hundred and Thirty First Report of Rajya Sabha Committee on Petitions on “Petition Praying for Integration and Empowerment of Leprosy Affected Persons”, 24th October 2008
No. The term “leper” is not acceptable because it identifies a person only by their disease and the term increases stigma and undermines their feeling of self worth.
People affected by leprosy have stated that they do not accept the use of the term leper and, along with the WHO, ILEP and its partners, feel that they should be identified as:
- a person with leprosy
- an individual diagnosed with leprosy
- people affected by leprosy