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World Leprosy Day

Advocacy for the rights of leprosy-affected people

There are several organisations working in our country to address the leprosy problem under the government's National Leprosy Elimination Program (NLEP). The Leprosy Mission is one such organisation operating in this crucially important area since the eighties of the last century with programs for holistic care in an integrated manner. The main focus is the elimination of the causes and consequences of leprosy with the ultimate vision for a "world without leprosy." It works for the total rehabilitation of the leprosy affected people. There is economic, social, physical, spiritual, psychological and emotional disability. All these areas require different interventions if a full cure is to be brought to the person affected by leprosy.

Martin Adhikary
JANUARY 27 this year is the 55th World Leprosy Day. Leprosy still remains a stigmatising disease and, as such, is a sociological and developmental issue. We don't need to write much about this. There is a need for a transformation of the awareness that is already there about leprosy, and to address the stigma causing alienation of the affected people from the society. What I would like to deal with is the societal and. for that matter, an integrated approach to this public health problem urging for advocacy for the human rights of the people affected by the disease.
From the remote past the stigma of leprosy used to be legitimised. Still today in countries like Bangladesh leprosy remains as a stigmatising disease, although we can say this is decreasing gradually. People affected by it cannot marry, and married ones are easily divorced. They don't have the right to vote. Their children are not easily admitted at schools, and are looked down upon by others as ones cursed by God! They lose jobs and do not have access to society. Life is rather miserable for them.
In history, people with leprosy were so mistreated that they were not considered as full human beings and were considered cursed by God for their supposed sin. The presence of any disease, deformity or disability -- whether physical, mental or spiritual --reveals certain deplorable facts about our world as a whole We are all bound up in a hydra headed network of personal and structural sins, and all that negates life and robs it of its happiness.
There are several organisations working in our country to address the leprosy problem under the government's National Leprosy Elimination Program (NLEP) The Leprosy Mission is one such organisation operating in this crucially important area since the eighties of the last century with programs for holistic care in an integrated manner.
The main focus is the elimination of the causes and consequences of leprosy with the ultimate vision for a "world without leprosy.” It works for the total rehabilitation of the leprosy affected people. There is economic, social, physical, spiritual, psychological and emotional disability. All these areas require different interventions if a full cure is to be brought to the person affected by leprosy.
Dr. Paul Brand, pioneer of reconstructive surgery, deeply felt the anguish of the leprosy-affected people because of the stigma attached to the disease. He observed: 'The person with leprosy loses touch in more than one way. Not only does this horrible disease get into the nerves of his arms and destroys them and strangles them so that he can never again feel with his fingers, but somehow, and for some reason 1 cannot understand, this same germ gets between him and his friends, gets between him and his employer, gets between him and his community and builds a barrier so that a man who had experienced the loving warm greetings of his friends before, who had a job and could earn his living, finds that people turn away, that the children will run from him because they have been told by their parents they mustn't associate with this man who has leprosy He is treated with a superstitious kind of fear And so it is said that leprosy is a lonely disease ’
From awareness to accessibility. Awareness about the disease is carried on among the community people, who need to be educated that leprosy is a physical disease like other diseases In the entire process, community participation is vitally important for the cause of
the rehabilitation of the leprosy sufferers into their communities.
The Preamble to the Universal Declaration of Human Rights, adopted in 1948, recognises "the inherent dignity" and "the equal and inalienable rights of all members of the human family" as the foundation for freedom, justice and peace in the world. When we want to advocate for the rights of the people with leprosy, we need to seriously speak up, draw the attention of the society to this important issue with the ultimate objective to direct decisionmakers towards a solution.
Advocacy is working with other people and organisations to make a difference. The root of the word "advocacy" is "voc" or "voz," meaning voice. As such, "advocacy" means giving voice to someone. or a group or population that is voiceless and helpless.
An ancient Hebrew sage said: "Open your mouth for the dumb, for the rights of all who arc left desolate; Open your mouth, judge righteously, maintain the rights of the poor and needy (Bible: Proverbs 31:8-9)." So advocacy would mean working as intermediary between the voiceless or the weak ones and the ones who have power, who make policy or who yield authority over them.
It requires the intermediate steps for raising the awareness and motivates the people, who influence and make decisions for society. It is not merely making people aware of a problem. Awareness is a step in the process, which should move the decision makers to take a prescribed policy action, and policy change for new actions that aims at transformation of lives and communities overcoming their specific prob-
lem(s).
Advocacy for the rights of the leprosy-affected people can involve a series of planned interventions for effecting a positive change in response to stigma, alienation and deprivation. We need to prevent this alienation and deprivation by means of the interventions, or mobilise people to undertake actions to overcome these problems.
Eradication of stigma relating to leprosy cannot be achieved so easily. Along with treatment, it needs continuous health education and social mobilisation for community support to sufferers and their families. The issues surrounding leprosy cause overall sufferings and loss. This is especially true of those with physical disability. It leads to an identity crisis of the person in question. It is a total suffering. Therefore, it has to be addressed holistically, l.e. the integration should include all these: physical, economical, societal, psychological, spiritual and environmental.
Self-advocacy: The best possible way to advocate for people affected by leprosy is to ensure a sense of self-advocacy on the part of the suffering person To quote Paulo Freire: "The finest struggles with the best results arc those fought by the oppressed people themselves." The Leprosy Mission plays a role in ensuring social inclusion and access to equal rights for all services and resources for leprosysufferers.
This is being done through the self-help groups for promoting income generating activities, health education and community awareness through social mobilisation, all adding to the protection
of the human rights of the affected people. All these are essential parts of community based rehabilitation. the goal of which is the total empowerment of the patients at societal level. Patients' self-help groups are an infrastructure in advocacy.
To ensure efficacy in this, there is a need of a political commitment both on part of the government and the public. One of the most important areas is legislation to stop exclusion and discrimination, and in favour of integration.
Discrimination is markedly decreased in many countries. But in Bangladesh this still remains a big problem. Often the person (specially female) affected has marital problems and faces divorce; they are excluded from the voters list, denied entrance to religious places and even businesses and shops, faces dismissal from work, some times public transports are denied of them, and has trouble in finding job.
Recently, our government has made special provision for the transport of disabled people However, we need to see how this is put into practice, (hough, in case of people with handicaps due to leprosy.
The issue of advocacy for leprosy-affected people cannot be isolated from the concept of human development. It is verily a development issue and needs to be integrated into the mainstream developmental philosophy and practice involving the entire community and its political will, going beyond the administration of MDT and reconstructive surgery, but also more comprehensive services of socio economic rehabilitation of the affected, advocacy for their genuine human rights.
Until the people in question are empowered and socioeconomically rehabilitated, giving them the dignity of human life, the issue of leprosy will continue to linger. Let us join hands with one another to ensure that people who are marginalised and excluded are mainstreamed and included for
accessibility for every possible opportunity in life.
Reverend Martin Adhikary is a Christian Theologian and lr»-Charge of Advocacy of the Leprosy Mission Bangladesh