A/HRC/38/42
C.
Failure of the medicalization of stigmatization and discrimination
Resocializing leprosy-related discrimination
45.
The second decade of the twenty-first century was marked by an acknowledgment
that the medicalization of stigmatization and discrimination (that is to say, the idea that the
availability of medical treatment and the dissemination of medical knowledge about the
disease would eliminate stigmatization and discrimination) was not enough to eliminate the
historically, socially, politically, economically and culturally entrenched discrimination
against persons affected by leprosy. Such discrimination had been systematically
reproducing unequal opportunities and access to the goods and services of the State and
segregation from community, social and family life, and causing tremendous suffering and
distress to persons affected by leprosy.
46.
Medicalized interventions on what is narrowly described as health-related stigma are
mostly based upon “immodest claims of causality” 40 and not on evidence. They also
compartmentalize the problem in a way that fails to grasp its multidimensionality. While
the ground-breaking effect of multidrug therapy on the lives of persons affected by leprosy
and on the public’s image of the disease cannot be dismissed, discrimination persists.
47.
Stigmatization and discrimination on the grounds of leprosy must be resocialized, 41
contextualized and approached as interdependent social, economic, political and cultural
issues. Stigmatization and discrimination are mutually reinforcing. Enacted stigmatization
produces discrimination, which, in return, reinforces stigmatization, trapping persons
affected by leprosy in a spiralling chain of disadvantage.
48.
It is necessary to analyse how leprosy intersects with other social vulnerabilities.
Leprosy-related stigmatization is only the tip of the iceberg 42 of inequalities and inequities
that have historically excluded persons affected by leprosy from participating on equal
terms in society. Discrimination on the grounds of leprosy is multiple and directly
proportional to social vulnerability.
49.
However, and despite the current acknowledgment of the persistence of
institutionalized and structural discrimination against persons affected by leprosy and their
family members, existing indicators used to assess discrimination are mostly based on the
medical model. It is crucial to develop new tools that, in the light of the progress achieved
by the social model of disability, may be able to identify how societies erect barriers to the
full inclusion of persons affected by leprosy and how those same barriers can be taken
down.
50.
Discrimination on the grounds of leprosy is institutionalized, public, iatrogenic,
affiliated, multilayered and must be understood in its social, economic, political and
cultural context. In order to respond to discrimination in an effective way, it is necessary to
identify the societal spheres in which it occurs and manifests itself. Discrimination on the
grounds of leprosy may be found at the: (a) macrolevel of the State (in laws, jurisprudence
and public policies); (b) intermediary level of State goods and services, such as health
services, education, work opportunities and regulation; and (c) microlevel of community
life and/or the family.
Institutionalized and structural discrimination
51.
Legal dogmatics alone has failed to acknowledge the gap between written law and
the practice of law. Discriminatory laws and policies are not the only reason for the
exclusion of persons affected by leprosy, but also the lack of effective implementation of
40
41
42
10
A. Castro and P. Farmer, “Understanding and addressing AIDS-related stigma: from anthropological
theory to clinical practice in Haiti”, American Journal of Public Health, vol. 95, No. 1 (2005), pp. 53–
59.
Richard Parker and Peter Aggleton, “HIV and AIDS-related stigma and discrimination: a conceptual
framework and implications for action”, Social Science and Medicine, vol. 57, No. 1 (2003), pp. 13–
24.
Castro and Farmer, “Understanding and addressing AIDS-related stigma”, pp. 53–59.
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