People affected by leprosy have the same human rights as all people. In reality, the rights enshrined in United Nations’ conventions and international covenants remain unfulfilled for people affected by leprosy. Doug Soutar, of the International Federation of Anti-Leprosy Associations tells us how, and makes some practical recommendations to overcome the situation.
Democratic Republic of Congo
Leprosy is curable and easily treated with drugs provided free of charge from the World Health Organization (WHO). The disease (which is also widely known as Hansen’s disease after the Norwegian scientist who identified the bacillus) is caused by a mycobacteria which damages the nerves and skin and if left untreated, can lead to severe impairments and disabilities. Historically its physical effects have been a source of fear and have resulted in those affected being rejected, ostracised and stigmatised. Leprosy has traditionally been seen as a disease apart and those affected have been isolated and denied their basic rights and dignity. Rights-based approaches to health and development however, should be pursued for the benefit of all people, including those affected by leprosy.
In 2008 the UN Convention on the Rights of Persons with Disabilities entered into force. This convention represents a major new international legal instrument and with its greater focus on inclusivity in development, is of critical importance in pursuing the rights of all persons with disabilities, including those affected by leprosy.
The WHO Global Strategy on Leprosy highlights the importance of social justice and equity and stresses that this must be integral to all leprosy work including approaches to preventing disability, stigma and discrimination. Yet stigma and discrimination remain widespread for people affected, their families and communities. Negative attitudes are perpetuated through ignorance, fear, laws, the media and social exclusion. Health workers, in spite of their knowledge, may often be the worst offenders. Many countries maintain legislation adversely affecting the inheritance, employment and divorce rights of those affected. In India, a country which has ratified the UN Convention on the Rights of Persons with Disabilities, there remain over 600 leprosy settlements and those affected are often barred from public services and education.
Specific practical strategies are therefore needed to ensure States and their citizens meet their obligations to respect, protect, fulfill and promote rights and to end leprosy related discrimination.
Practical Approaches
Education: Raising awareness among people affected by leprosy and their communities about their rights, facilitating social mobilisation and enabling communities to advocate for legislation in their countries are some practical activities that can be undertaken. For example, in Brazil, which has the second largest number of new cases of leprosy each year after India, the Ministry of Health has recently produced an excellent booklet on Hansen’s disease and human rights for people affected. Such “know your rights” booklets can be vital tools for empowerment.
Better use of media and language: Labeling people by their disease is not acceptable. The use of the term “leper” should be avoided and those who still use it challenged. However, the media in many instances is still guilty of perpetuating negative and disempowering attitudes. Vigilance and persistence are required to promote more inclusive terminology and appropriate language. Much has been achieved already in the case of HIV and AIDS, so why not in leprosy? We need to challenge unacceptable and stigmatising labels continuously.
Legislative reform: Attitudinal change often comes about only when society has been forced by law to respect certain basic human rights. In the case of leprosy, the collation of data on existing legislation, both good and bad, can give a focus for future campaigns for change. In theory, rights and justice are reflected in laws and conventions, but the most enlightened of these are worthless unless in practice they are reflected in the way we relate to each other. The concept of dignity for the person goes hand in hand with rights.
Working together: Traditionally, those affected by leprosy were isolated, ostracised and segregated. But all people who are marginalised, disabled or oppressed, including those affected by leprosy, need to engage more broadly with each other in order to promote the rights of all. Initiatives focusing only on the human rights of those affected by leprosy may risk failure, and their advocates may themselves continue to be marginalised and excluded from the development process unless a more inclusive and universal rights-based approach is taken. Within the disability movement and even among the organisations of people affected by leprosy and their advocates, there has often been a tendency to pursue and promote exclusive approaches.
Still, there is reason for optimism. Last year the UN Human Rights Council passed a resolution on the Elimination of discrimination against persons affected by leprosy. Organisations such as the International Federation of Anti Leprosy Associations (ILEP) and patient advocacy organisations like International Association for Integration, Dignity and Economic Advancement (IDEA) are doing all they can to promote practical ways in which people affected by leprosy and their communities can advocate proactively for and bring about the changes required to ensure that the rights of those affected are upheld and that discrimination is eliminated.
Integration of leprosy treatment into the general primary health services and integration of leprosy rehabilitation and prevention of disability programmes into broader community based rehabilitation programmes are prerequisites for sustainable leprosy control. Likewise, work to uphold the human rights and dignity of people affected by leprosy needs to be integrated into the growing efforts, both globally and locally, to pursue integrated and inclusive rights-based approaches to health and development for all.
Douglas Soutar
General Secretary
International Federation of Anti Leprosy Associations www.ilep.org.uk
Filed under: Rights to health
