By Bhavisha Virendrakumar, Cathy Stephen, Emma Jolley and Elena Schmidt
Executive summary - Introduction
Sightsavers is an international non-governmental organisation (INGO) working to eliminate avoidable blindness and promote equal opportunities for people with disabilities. Addressing stigma and discrimination directed at people with disabilities is fundamental to our social
inclusion programmes and our Social Inclusion Strategy. In order to guide our programme design and implementation, it is critical for us to develop a good understanding of why and how stigma and discrimination occurs, as well as interventions to mitigate their impact in the contexts of our programmes.
This report presents a systematic literature review undertaken to understand the extent, quality and findings of published and unpublished literature on interventions designed to tackle disability-related stigma and discrimination in sub-Saharan Africa and south Asia. For the purpose of this review we follow the UN Convention on the Rights of Persons with Disabilities (UNCRPD) and define persons with disabilities as “those who have long-term
physical, mental, intellectual or sensory impairments, which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others”.
In academic literature, stigma is described as an “attribute that is deeply discrediting” and as a mark separating individuals from one another based on a socially conferred judgement that some persons or groups are tainted and “less than”. For discrimination, we follow Rohwerder’s definition of the unjust or prejudicial treatment of specific groups of people, often on the grounds of their individual characteristics, such as race, age, sex or presence of an impairment.
The Sightsavers’ Social Inclusion Strategy refers to addressing stigma and discrimination as a key step on the pathway to equitable inclusion for people with disabilities. In our programmatic work, we target both stigma and discrimination and often use the two terms together. However, we recognise that stigma and discrimination are two associated but distinct concepts that can feed and reinforce each other. Commonly, stigma is often
described through negative attitudes and stereotypes, while discrimination refers to unjust treatment. However, stigma can also refer to negative behaviours and practices (either anticipated or experienced), and in this sense is closely related to the term “discrimination”. In addition, some literature distinguishes between discriminatory practices, which fall within the purview of the law (referring to these as discrimination) and those that are outside the legal purview (referring to these as experienced stigma).
A number of systematic and literature reviews have recently been conducted on stigma and discrimination associated with specific types of impairments or health conditions, or among specific sub-populations, such as children. Our review adds to this body of evidence by
focusing specifically on interventions intended to address stigma and discrimination among all population groups and impairment types in specific countries.
The primary focus of this review was to identify studies that describe the effectiveness of interventions to tackle disability-related stigma and discrimination. The secondary set of objectives focused on understanding the individual, interpersonal, organisational, community and public policy factors that are associated with stigma and discrimination. We sought to identify the various ways in which stigma and discrimination have been reported to manifest, the extent and range of their outcomes on the lives of people affected, and how they may intersect with other individual characteristics and types of stigma. Finally, we sought to identify toolkits and good practice guidelines for addressing stigma and discrimination, as
well as validated tolls and metrics for measuring them.