I was excited when readers of my articles and poems gave me positive feedback that was written on people affected with Leprosy along with stigma and discrimination. It indicated as readers or listeners are eager to know about different social issues as like stigma prevailing in the society. Since He or she is becoming a victim of own family and society it attracts human right issue of people affected with Leprosy. Religious beliefs and deep rooted thoughts are very much responsible for the discrimination. People still believe as it is result of past sin or curse that’s why people are there who fears to be diagnosed as Leprosy. On the other some patients are attending different service centres to get treatment repeatedly even after complete dose, it is because of existence of their patches on the skin even after the treatment. This recycling of registration of Leprosy patients is one of the reasons that delays declaration of Leprosy elimination in Terai districts of Nepal. In this context, an effort only from public health sector will not be sufficient to achieve goal of leprosy elimination. It requires support from media to raise extensive awareness in the community. What is Stigma and Discrimination?
The fear of leprosy leads to the stigma and discrimination and is due to lack of understanding and knowledge about leprosy – which increases misconceptions about the disease’s transmission and treatment. The fact that most of those with untreated leprosy end up with severe deformities and disfigurements has contributed to the stigma (L.Navon, 1998). The commonly used definition of stigma is “the attribute that is deeply discrediting” and “that reduces the bearer from a whole and usual person to a tainted, discounted one (Goffman, E., 1963).
Stigma can be classified into three types (van Brakel, 2003): (1) Enacted – the commonest type in which there are actual experiences of discrimination. (2) Perceived – stigma viewed from the perspective of the patient. It is “the devaluation, shame, secrecy and withdrawal triggered by applying negative stereotypes to oneself”. (3) Self stigma – the fear of being discriminated against (van Brakel W. 2006).
Determinants of Stigma
Determinants of stigma are: (i) Lack of knowledge: Lack of knowledge about aetiology & curability, spread of the disease and whether it is hereditary or not, counts for irrational behaviour. Even educated and respected persons can become victim of misconception about leprosy (ii) Attitude: Attitudes are powerful determinant of stigma. Attitudes are learned responses and are manifestations of socially shared past experiences and often defined in terms of beliefs (evaluation), affects (feelings) and behaviour tendency. Community attitudes are part of a cultural belief and value system. Change in experience provides opportunity to bring change in attitude. (iii) Fear: Fear is a major driving force of stigma. People fear mainly two things: deformity and social exclusion. Social exclusion includes diminished marriage prospects for children or other relatives and reduced earning capacity. Fear of the risk of transmission of the disease is often seen even in doctors and other health workers who are not used to working with leprosy. (iv) Blame and shame: Behaviour of the people strongly influenced by attitudes and beliefs prevailing in the society. Being part of the same community and culture, people feel ashamed of having leprosy because they are blamed for having done something very bad to be punished in this way and suffering for „their own fault‟. For this reason people conceal the diagnosis as long as possible. People internalize these feelings and start withdrawing themselves from social participation. People abandon their own family, because they fear that their presence will have serious negative effects on the family
Impact of Stigma
The impact of stigma can be seen at different levels and sectors. Having a stigmatizing disease like leprosy severely affects aspects of life such as social status, employment opportunities or jobs, marriage and family life. These can be summarized as effects on: (1) the individual, (2) the community, (3) public health programmes and interventions (Heijnders, M. and van Der Meij, S, 2006), (van Brakel W. 2006). Some community leaders suggest that changing attitudes is a huge task because ‘leprosy remains a taboo subject. It is a disease of society, not of people’.(Nicholls PG, et. al. 2003)
Campaigning against Stigma
Fear and stigma are difficult to remove in the community. They can only be dealt with through a combination of strategies to fight stigma by focusing on: (a) changing the image of the diseases (b) Integrating programmes (c) Rehabilitating patients and (d) Media campaigns (Heijnders, M. and van Der Meij, 2006). Education and media campaigns help to correct false beliefs and raise awareness of new advances. They include information about leprosy and its treatment, context-specific media messages addressing misconceptions and traditional beliefs about leprosy, positive images of leprosy and testimonies of people successfully cured of leprosy (WHO, 2005). WHO encourages integrating leprosy into the general health service.
What can be used as key Messages?
1. All human beings are born free and equal in dignity and rights.
2. Early reporting to health centre for diagnosis & treatment is most.
3. Use of words like ‘Leper’ not word as ‘kor’ , ‘kodi’
4. Self Respect among Leprosy affected people to be promoted.
5. Person affected with Leprosy (PAL) helping other PAL.
7. Use of positive slogans like: Leprosy is caused by a Bacteria “Mycobacterium Leprae” and not because of any past sin or curse. Untreated leprosy patients are the only known source for M. leprae. Nose appears to be the major port of entry of the bacilli. Leprosy is not spread by skin contact.
Goffman, E. Stigma: notes on the management of a spoiled identity. New York: Simon & Schuster. 1963
Heijnders, M. and van Der Meij, S. ‘The fight against stigma: an overview of the stigma reduction strategies and interventions’, Psychology, Health and Medicine, 2006; 11: 353-363.
Navon, L. ‘Beggars, metaphors and stigma’, Social History of Medicine, 1998; 11: 89-105.
Nicholls PG, Wiens C, Smith WC. Delay in presentation in the context of local knowledge and attitude towards leprosy – the results of qualitative fieldwork in Paraguay. Int J Lepr Other Mycobact Dis, 2003; 71: 198–209.
van Brakel, W. ‘Measuring leprosy stigma – a preliminary review of the leprosy literature’, International Journal of Leprosy and Other Mycobacterial Diseases, 2003; 71: 190-197.
van Brakel W. ‘Measuring health related stigma’, Psychology, Health and Medicine, 2006; 11: 307-334.
World Health Organization Global Strategy for Further Reducing the Leprosy Burden and Sustaining Leprosy Control Activities, (Planned Period 2006 – 2010). Geneva: World Health Organization. 2005
Source: TB/Leprosy Annual Report, 2066/67, Ministry of Health and Population, Eastern Regional Health Directorate, Dhankuta, Nepal.