Special Rapporteur’s report to UN General Assembly
UN Special Rapporteur Alice Cruz made her second report to the United Nations General Assembly this month. The topic is the limitations and challenges around national legal protections of the rights of persons affected by leprosy and their family members. The report is currently available in English: other languages will follow.
Disability and impairments
Ms Cruz observes that disability, rather than impairment, is what marginalises, excludes and dehumanises people, but that ‘disability’ and ‘impairment’ are often confused in leprosy. She notes, for example, that the WHO gradings (up to Grade 2, visible impairments) are described as disability gradings but do not take into account the disability that results from the interaction between impairments and attitudinal or environmental barriers. Moreover, they count persons with impairment at the time of diagnosis but do not count persons who experience evolving impairments after release from MDT treatment.
Ms Cruz argues that the issues for people affected by leprosy have been left largely unexamined in guidance about disability, and suggests three reasons for this:
- Leprosy is still predominantly seen as a health problem, not a disability issue
- Leprosy related services have in many settings been delivered primarily by NGOs who have engaged in rights-based approaches only comparatively recently
- Leprosy occurs mainly in the global South whereas much of the global narrative on disability comes from the global North
Persons affected by leprosy should therefore be classified as persons with disabilities in the CRPD convention, on the basis of prevalent physical and sensory impairments, widespread discrimination based on harmful stereotypes about leprosy, and the degree of psychological impairment that results from this discrimination.
Legal protections exist …
The Special Rapporteur’s research, and responses to her questionnaire, show that many countries maintain a solely medicalised approach in their disability-related regulations, and very few have provisions specifically for leprosy. More positively, some of the 23 WHO priority countries for leprosy do have regulatory frameworks in place in line with the social model of disability and the CRPD convention, and the report examines the provisions in place in five of these countries.
… But barriers are widespread
The analysis shows that many barriers continue to prevent people gaining full access to their rights, despite the legal protections that may be in place. There can be a stark difference between people’s legal rights and their experience of trying to access those rights ‘on the ground’. Examples include:
- Medicalised definitions of disability and disability levels, especially significant in situations where medical practitioners need to ‘sign off’ on disability entitlements
- Lack of information on rights and entitlements, or the unintelligibility of the information being provided
- Paternalistic or abusive attitudes by duty-bearers that prevent access to benefits
- Systemic discrimination that prevents access to healthcare workers or other officials
Recommendations
The Special Rapporteur concludes with a series of recommendations to UN States on their concepts of disability; on promoting equality and non-discrimination; on improving access to information; on strengthening access to health and rehabilitation services; on decent work and employment; on social protections; on access to justice and effective remedies; and on data collection.
ILEP welcomes the Special Rapporteur’s report and advises a close reading of it. ILEP supports her recommendations and joins her in calling on Member States to take positive actions to build and improve legal protections around the rights of persons affected by leprosy and their family members.