An unfinished business: discrimination in law against persons affected by leprosy and their family members

In October, UN Special Rapporteur Alice Cruz makes her first report to the UN General Assembly. Her topic is the laws, regulations and norms that continue to dehumanise persons affected by leprosy and their family members. She has also produced a brief, 2-page factsheet that covers the main themes of the report

Discriminatory laws – whether actively enforced or not – are deeply offensive. On a personal basis, they rob people affected by leprosy of their dignity and dehumanise them, for example by labelling them ‘lepers’ and calling, in various ways, for their exclusion and segregation. From a national perspective, they contradict the UN Principles and Guidelines that affirm that States should take all measures to abolish discriminatory laws and regulations; several provisions of international human rights law; and pillar 4 of the WHO global leprosy strategy. And yet, the Special Rapporteur, using a wide variety of sources including information supplied by ILEP and ILEP members, has identified at least 130 ongoing discriminatory laws in more than 23 countries.

These discriminatory laws have been put in place since the beginning of the 20^th century. They reflect the idea of contagion – a particular fear of the imperial powers. Although there was never scientific evidence to justify compulsory segregation, whether of children from their parents or of individuals from their families and communities, experts did not abandon the idea until 1948, and some countries continued to enforce segregation for decades after that. Ms Cruz writes: ‘The biomedical concept that affirmed the need for prophylactic segregation continued to influence national legal and regulatory frameworks [which] give legal legitimacy to, and reinforce, structural and interpersonal discrimination on the grounds of leprosy, endorsing and normalizing the dehumanization of persons affected by leprosy and denying them any possibility of enjoying a life with dignity.’

The Special Rapporteur’s report provides considerable detail as to the types of rights that are violated by these discriminatory laws. They include the right to participate in political life, rights of freedom of movement including use of public transport, rights related to marriage, rights of migrants, the right to work (many laws restrict access to certain jobs), and rights to occupy positions of authority. Alongside these denials of rights are the many laws that allow the authorities to forcibly segregate or hospitalise persons affected by leprosy. There are also numerous laws and regulations that seem neutral on the surface but which may be implemented in ways that stigmatise and discriminate.

Laws on countries’ statute books are only part of the problem. The report gives examples of traditional non-written customs and practices, which may exist in many countries, that discriminate against persons affected by leprosy. These are sustained by stereotypes connected with traditional beliefs about leprosy, many of which come from world or local religions.

The Special Rapporteur describes efforts in several countries to persuade governments to amend or repeal discriminatory laws. She especially emphasises work done by the Law Commission, civil society organisations and individuals in India, where there are still 100 discriminatory laws. The experiences in India demonstrate the importance, and the challenges, of using litigation through the courts as a means of fighting formal discrimination.

The report concludes with a wide-ranging series of recommendations for States. Primarily, they stress the need for States to not only repeal discriminatory laws and prohibit discriminatory practices, but also put in place legal frameworks and procedures that recognise persons affected by leprosy as rights holders, enjoying access to entitlements and opportunities on an equal basis with others. These frameworks would include laws to protect the rights of persons affected by leprosy, proper monitoring and complaints processes, education programmes for government employees, and elimination of derogatory language. There are also recommendations targeted at eliminating traditional discriminatory customs and practices, implementing reparation programmes as restorative justice, taking active and positive steps to promote participation of persons affected by leprosy and their family members in all forms of social and economic life, and paying particular attention to the protection of women.

ILEP recommends a close reading of the report, and for it to be used as an impetus for ILEP members, civil society organisations and activists to renew their efforts to rid the world of anti-leprosy discrimination.