OPINION Advocacy and Empowerment: Putting A Human Face on Leprosy Elimination In the drive to eliminate leprosy, have we focused unduly on statistics, and neglected the individuals we are trying to help? AUTHOR: Dr. S.D. Gokhale Dr. S.D. Gokhale is chairperson of the International Leprosy Union, a non-governmental development organization that supports the cause of leprosy elimination leading to total eradication and solicits support by building political will and awareness in the print and electronic media. 　 　 When people in India discuss the role of media in the campaign to eliminate leprosy, they highlight the need for advocacy. 　But in discussing advocacy, we need to be clear about what we mean; otherwise, our efforts will be channeled into traditional pursuits such as brochures and posters that fail to achieve our goal. 　Advocacy is a process of communication and persuasion in support of a cause; a well-thought out, professional strategy to influence change. 　Where elimination is concerned, the goal of advocacy should be to bring about a change in mindsets - of governments, agencies, NGOs, the leprosy-affected and society at large. 　 　 Include former patients when planning any policy or strategy. Ultimately they are the masters of their own destiny. 　 　The public need to be told that leprosy is a disease like any other, that it can be cured, and that there is no reason to shun those affected by leprosy. Those of us working to eliminate leprosy need to be reminded it has a human face. And the leprosy-affected need to be empowered. 　It seems to me that through a massive elimination campaign based on the distribution of MDT to achieve WHO and government targets, we have lost sight of the individual leprosy sufferer and his dignity as a human being. 　Because of the system of free delivery of drugs, free housing, and free clothing we have made leprosy patients chronically dependent upon either the state or on the hospitals that are supported by voluntary donations, mostly from abroad. 　If a person becomes a parasite, how can we expect him to be self-confident and be accepted in normal society? In the process of receiving free delivery of services, leprosy patients have lost not only their dignity, they have lost their souls. 　This donor-recipient approach has de-humanized leprosy work. Because its focus is on statistical targets, leprosy workers concentrate entirely on numbers and not on individual sufferers or their rehabilitation. Joseph Stalin said: “The death of one man is a tragedy. The death of millions is a statistic.” Are we going to de-humanize leprosy by only talking about statistics? 　My experience of working with WHO missions in Nepal, the Philippines and Bangladesh, and of work in China and Korea as ILU chairperson, tells me of the need to reorganize our approach. 　In this, the media has an important role to play, as the recent advocacy workshop in Raipur made clear. I include some of the suggestions put forward there in the following list of prerequisites of a successful elimination campaign. 　 1.  Empower cured persons and involve them in communicating to the community that leprosy is curable and treatment is free, and make use of them in media campaigns. 　 2.  Create a resource center where photographs, human-interest stories and basic news items are available to any media organization in India, in order to get the media more interested and involved in the elimination campaign. 　 3.  Develop a district-specific media strategy, including organizing field trips for journalists to see the situation at first hand. 　 4.  Include former patients when planning any policy or strategy. Ultimately they are the masters of their own destiny. Our job is to help them help themselves. 　 5.  Involve all NGOs and community-based organizations in leprosy work. Until now, it has been the monopoly of leprosy agencies or at most NGOs working in the health area. 　 6.  Employ more women to deal with female leprosy cases, in order to give a human face to leprosy. There is also a need to recognize people who have been totally rehabilitated with an award of some kind - and also the dedicated workers who made this possible. 　 7.  Place more emphasis on reconstructive surgery, rehabilitation and issues regarding children and women living in the shadow of leprosy. All our claims about elimination are not going to be trustworthy as long as people see disabled and disfigured persons around them, and women and children who are stigmatized. 　 8.  Have leprosy-disabled persons join the movement of all disabled persons to see that the Persons with Disability Act, which contains provisions for prosthetic appliances, seed money for vocational rehabilitation and other initiatives, is effectively implemented.

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