UN Special Rapporteur’s vision

In June, Beatriz Miranda Galarza, the UN Special Rapporteur on the elimination of discrimination against persons affected by leprosy (Hansen’s disease) and their family members, presented her first report to the UN Human Rights Council. The report describes the impact of the mandate since its establishment in 2017, her vision and priorities for the coming years, and her intended method of work. The report was informed by extensive consultation with persons affected by leprosy, as well as other stakeholders including ILEP.

Background: four approaches

The report begins with a description of the historical struggle of people affected by leprosy, from exclusion to recognition as holders of rights. The four approaches are the religious and moral approach, the scientific and administrative approach, the representative and cultural approach, and the human rights-based approach. The Special Rapporteur points out that these approaches may co-exist and that each has a positive contribution to make (as well as some negative implications).

Voice of persons affected by leprosy and their organizations

Consultations by the Special Rapporteur revealed positive effects, especially at the international level, since the mandate was created in 2017. At the local level, there are also positive effects. For example, some grass-roots organizations are more aware of violations of the rights of persons affected by leprosy in their own communities. For some organizations of persons affected by leprosy there is greater recognition than before, due to participation in human rights events related to leprosy and engagement with the United Nations. This effect was especially striking in countries where the Special Rapporteur had made country visits.

Key priorities for the mandate

Following consultation, the Special Rapporteur has selected five main priority areas for the next three years.

  • Rights-based systems surrounding support and care for leprosy within the family and communal context, guided by reliable data regarding the mental, social and economic impact of leprosy on affected persons and their families.
  • Intersectional issues and marginalized groups, with a focus on the challenges that persons with leprosy-related disabilities face in their daily lives, and particular reference to the circumstances of children, women, young people and older persons.
  • Social, political and cultural considerations. These include the strengthening of social movements and activism, tackling the difficulties experienced by organizations of persons affected by leprosy, the preservation of leprosy history, living conditions in leprosy colonies or settlements, and migration factors in leprosy.
  • Legal and economic dimensions – action on discriminatory laws, poverty and the need for socioeconomic empowerment.
  • Environmental and conflict-related considerations, including factors such the effects of conflicts in worsening the already precarious living conditions of leprosy-affected communities, and the effects of climate change.

The first of these priorities will be the theme of the Special Rapporteur’s 2024 report to the UN General Assembly. Others on the list will no doubt emerge as themes for subsequent reports.

Guiding principles for the mandate

The Special Rapporteur has expressed three main principles that will support her mandate. They are:

  • An ethics of care as a fundamental aspect of human life, challenging the sometimes negative attitudes around care and support.
  • Contribution to a culture of listening to persons affected by leprosy. ‘The right of persons affected by leprosy to participate at every level of public and private life will not be realized unless listening is embraced as a practice that evolves into a culture.’
  • Promoting cooperation and the co-production of policies and strategies, not only to support the mandate but to realize the goals of the leprosy rights movement as a whole.

To quote from the conclusion of her report, the Special Rapporteur ‘will promote a human rights approach guided by an ethics of care that places people’s voices at the centre and as the primary source of evidence, thereby contributing to the construction of a culture of listening and more equitable and just societies. The Special Rapporteur underlines the particularity of leprosy (Hansen’s disease) as a catalyst of social, political and cultural change, serving as a beacon for a more democratic, humane and diversity-respecting world. In the present report, she underscores the significant transformation for individuals affected by leprosy, as well as their families, organizations and allies, brought about by the implementation of the mandate.’