UN Special Rapporteur – Leprosy

The UN Special Rapporteur on discrimination against persons affected by leprosy and their family members, Alice Cruz, gave her final report to the Human Rights Council this month.

The report is a fine reflection on the achievements of her mandate during the past six years. ILEP considers these achievements to have been significant. We highlight:

• The mainstreaming of leprosy or Hansen’s disease within the UN systems, showing the vital importance of addressing leprosy issues from a human rights perspective.
• The adoption of a gender approach, recognising the dehumanising effect of harmful stereotypes and structural violence against women and children affected by leprosy.
• The four country visits which offered States constructive recommendations to better safeguard the rights of persons affected by leprosy and their family members.
• The exposure of the way in which discriminatory laws, regulations and customs formalise harmful stereotypes about leprosy and thus contribute to people’s ongoing social exclusion.
• The proposed framework by which States can improve access to information, health services, decent work and employment, social protections and justice.
• And finally, the mandate’s progressive empowerment of organisations of persons affected by Hansen’s disease, contributing to their stronger voice at national and international level.

But her report is also realistic in terms of what has not been achieved. It provides a lamentably long list of ongoing challenges, such as discriminatory laws that remain in force; institutionalised discrimination in education, healthcare and social service; denial of reparations to persons whose rights were violated by State-mandated segregation; and other deep-rooted attitudinal barriers. The report concludes with a summary of actions States need to take to address centuries of dehumanisation and denial of rights. ILEP echoes the Special Rapporteur’s call to States to take positive steps not only to prevent discrimination, but also to tackle it directly through specific measures aimed at accelerating or achieving de facto equality, non-discrimination, dignity and integrity.

ILEP delivered a written submission to the Human Rights Council in response to Alice’s report, and expressed heartfelt appreciation to the Special Rapporteur for all that she has undertaken in the past six years. Furthermore, ILEP took the opportunity to remind States parties and the Council that, although there has been commendable progress in terms of the expectations when this mandate was established, much remains to be done. ILEP echoed the call by organisations of persons affected by leprosy, worldwide, for a continuation of this important mandate. A decision on that matter is expected in mid-July