A/HRC/44/46/Add.2
doctors are not always duly equipped to diagnose physical impairments related to Hansen’s
disease. This can result in people being denied appliances, while their impairments, whether
visible or invisible (such as loss of sensation or chronic pain), may severely limit their
activities and ability to work. Difficulties with bureaucratic procedures were also reported
as barriers to access to disability rights.
62.
Moreover, many persons affected by Hansen’s disease are not included in the formal
labour market. 31 They often undertake physically demanding work that can aggravate
physical impairments over time. The Special Rapporteur heard many testimonies on the
unavailability of assistive devices and support, as provided for in article 4 of Law No.
11520, which is still awaiting regulation. The urgent need for its regulation was widely
debated. Many of the rehabilitation needs are fulfilled by NGOs, which also launch most of
the initiatives for the labour inclusion of persons affected by impairments related to
Hansen’s disease.
63.
Eligibility conditions in social protection programmes cannot rely on a narrow
medical focus, nor be limited to work capacity or medical assessments. They should follow
the principles and provisions of the Convention on the Rights of Persons with Disabilities
(see A/70/297). With regard to disability rights, a gap between law in theory and law in
practice may be pushing part of the population affected by Hansen’s disease into social
exclusion and poverty.
Persons affected by Hansen’s disease in remote areas and in detention centres
64.
During the meeting with the Minister of Health and the visit to Combu Island,
concerns were raised about the diagnosis of Hansen’s disease among persons living in
remote areas. On Combu island, the Special Rapporteur learned of cases of persons and
almost entire families who had been living with the disease for years without diagnosis.
Another cause for concern was the incidence of Hansen’s disease among persons deprived
of liberty. In a meeting with the Federal Public Defender, the importance of collecting data
on the health status of this group was discussed.
V. The trauma of past segregation
A.
Current situation of former Hansen’s disease colonies
65.
In Brazil, prophylactic isolation as a State policy to control Hansen’s disease
endured in practice until 1986. Since the 1980s, the focus of health policy in Brazil has
turned to providing health care in ambulatory treatment centres, alongside the deactivation
of isolation settlements known as colonies. The process of deactivation and the social
reintegration of the people who had been segregated was not straightforward and there
currently remain around 30 colonies with residents from the generation of persons who
were segregated as a result of the State policy, as well as second and third generations.
Moreover, in some of these places, entire neighbourhoods have informally settled around
former colonies.
66.
The jurisdiction of former colonies is extremely complex and sometimes hard to
identify amidst different levels of federal, state and municipal administration, and amidst
distinct sectors, including health and bodies responsible for territorial management,
including provision of water, light and other basic resources, often with no clear
coordination among them. Another key issue is the ownership of lands and property. This
complexity results from the anomalies created by the segregation policy and requires
administrative and legal clarification.
67.
As the Special Rapporteur has explained in previous reports, past segregation
policies continue to have an impact on the lives of persons affected by Hansen’s disease
and their family members. Stigma was the dolus behind this global policy, which was a
gross violation of the civil and political rights of persons affected by leprosy (see
A/HRC/38/42 and A/HRC/41/47). The violations are of a permanent nature, since they are
31
14
Committee on Economic, Social and Cultural Rights, general comment No. 23, para. 47.
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