Persons affected by leprosy have been waiting too long for their disability rights to be recognised globally and nationally, a UN independent expert told the General Assembly.
“Persons affected by leprosy should be fully recognised as persons with disabilities in accordance with the Convention on the Rights of Persons with Disabilities, on the grounds of physical impairments caused by leprosy as well as discrimination based on harmful stereotypes about leprosy itself,” said Alice Cruz, UN Special Rapporteur on the elimination of discrimination against persons affected by leprosy and their family members.
“Family members of persons affected by leprosy self-identify as persons with psychosocial disabilities owing to stigmatization and discrimination on the ground of leprosy. Yet, persons affected by leprosy and their family members have been largely excluded from the global conversation about disability”, Cruz said in her report to the General Assembly.
While acknowledging progress at the national level to recognise equality for persons with disabilities, the Special Rapporteur urged States to do more to effectively implement the provisions of the Convention on the Rights of Persons with Disabilities.
Cruz expressed concern that disability rights seem to be restricted to social protection, and decisions on who is entitled to such protection remain largely in the hands of the medical professions. “Recognition of the diversity of persons with disabilities is limited, and more marginalised groups of persons with disabilities, such as persons affected by leprosy and their family members, are overlooked in national policymaking,” she said.
Furthermore, she expressed concerns about the limited participation of persons affected by leprosy and their representative organisations in institutional matters relating to them, as well as in umbrella organisations for persons with disabilities.
In her second report to the General Assembly, Cruz also urged States to double their efforts to protect, promote and fulfil the rights of persons affected by leprosy and their family members by recognising their disability rights and ensuring their participation to policymaking.
“States should review the qualification requirements for social protection to ensure access for persons with invisible and psychosocial impairments, as well as for persons with disabilities living in poverty, recognising the additional costs of disability; and ensure a universal basic income for persons affected by leprosy.”
She also recommended that intergovernmental agencies use leprosy as a case study to fill the evidence gap on the relationship between disability and poverty, and ensure leprosy inclusiveness in intergovernmental agencies and human rights monitoring mechanisms when addressing disability-related issues.