Human Rights Advocacy
Advocating for the human rights of the leprosy affected people
Reverend Martin Adhikary
Leprosy or Hansen's disease is one of the few most ancient diseases that have afflicted mankind. It still continues to be a big health issue in many of the so-called 'Third World' countries including our own, Bangladesh. Indian sub-continent is believed to have been the birth-place of leprosy. The ancient Indian medical book called the Sushrutashanghita (c. 600 B.C.) contained a description of it. The Mosaic Law in the book of Leviticus (Chapter 13-14) in the Old Testament has prescription about how the-then society was to deal with people affected by these diseases. We can hardly even imagine how in ancient time society stigmatized such people. Still today those who work with leprosy affected people have a hard time to get the medical treatment for these people integrated into the general health infrastructure because of the stigma attached to it.
Leprosy is a least infectious disease, which primarily affects skin, peripheral nerves and mucous membranes. A rod-shaped bacillus named 'Mycobacterium leprae' lie behind this. The Norwegian scientist Armauer Hansen first identified this bacillus in 1873.Thus it is also known as 'Hansen's disease'. The first medical answer to leprosy was not invented until 1941. But as the bacillus grew resistance this did not prove to be very effective. The WHO-recommended MDT (Multi Drug Therapy, a cocktail of dapsone, clofazimine and rifampicin) remains the most powerful medication against leprosy since the year 1981. Up to now around 30,000 people in Bangladesh have irreversible physical disability due to leprosy.
The societal and psychological dimension of this disease is my area and I would pursue for an integrated approach to this problem urging for advocacy for the human rights of the people, who easily get socially excluded and denied of their rights. Still today in countries like Bangladesh leprosy remains as a stigmatizing disease, although this is decreasing over the years because of the progress in medical science and social awareness. Stigma remains even after one gets cured of leprosy. Person with leprosy faces many problems in social interactions including marriage, inheritance, social acceptance, employment, etc. The married ones (especially women) are divorced. Many were and still are forced to live by begging. In fact, the words 'pauper' and 'leper' (the latter carries a derogatory sense, so it is not used by us now; the words 'person affected with or by leprosy' are used) went together often in the past. The Leprosy Mission Bangladesh (TLMB), the Bangladesh chapter of the Leprosy Mission International works for the eradication of leprosy and advocates for the human rights of the people affected by it. Removal of stigma enhances their human dignity by means of changing people's attitude that lies behind the stigma. These areas require integrated interventions for any holistic care for the affected person.
The community participation is vitally important for rehabilitation of the leprosy sufferers into community. To advocate for the rights of the people with leprosy we need to speak up, draw the attention of the society to this issue with the objective of directing decision-makers towards a solution. Awareness is the first step in the process, which should move the decision makers to make needed change in policy for new actions that should change the scenario. We need to address this issue by means of the interventions and mobilize people to undertake actions to overcome these problems. In Bangladesh the stigmatizing old British Acts concerning leprosy should be changed and new laws should be passed to protect the human rights of these people.
The Articles of the most recent UN Convention on the Rights of Persons with Disabilities should be implemented as far as possible in our country. Article 1 states the purpose of the same: “The purpose of the present Convention is to promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to promote respect for their inherent dignity. Persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others.”
An effective way to advocate for the human rights of the leprosy patients is in self-advocacy on the part of the sufferer. In this TLMB plays a role in ensuring social inclusion and access to equal rights for all services and resources for leprosy sufferers. This is being done through the self-help groups for promoting income generating activities, health education and community awareness through social mobilization all adding to the protection of the human rights of the affected people. All these are essential parts of community-based rehabilitation the goals of which are the total empowerment of the patients at their societal level.
There is a need of political commitment both on part of the government and the public. One area should be legislation favouring integration. Discrimination is markedly decreased in many countries. But in Bangladesh this still remains in practice. The issue of advocacy for leprosy-affected people cannot be isolated from human development. Social exclusion is a human rights issue. It is verily a development issue and needs to be integrated into the mainstream developmental philosophy and practice.
The writer is In-charge of the Advocacy desk of TLMB and a social worker.