From Margins to Mainstream: SBCC as an approach towards building an inclusive ecosystem for the most vulnerable communities - Considering the case of Persons with Intellectual and Developmental Disabilities (PwIDDs) in India
Summary:
In a society of competing dualisms between rich and poor, urban and rural, developed and undeveloped, it is not hard to imagine the conditions and challenges that the most vulnerable members of society face. Some of the most vulnerable yet largely invisible are the 31 million persons with intellectual and developmental disabilities (PwIDDs) in India. The obstacles that PwIDDs face are multi-dimensional, including not only the disability, but also the class, caste, and gender of the individual. They are rarely afforded the same opportunities as people without disabilities and are victims of multiple instances of human rights violations and othering. Dasra conducted a research titled Count Me In' that examined the life cycle of PwIDDs to understand breakpoints contributing to exclusion. It highlights cornerstone areas of non-profit programming to enable this community's inclusion in the country's development paradigm, with opportunities to live with dignity, achieve their full potential, irrespective of perceived disadvantages in their cognitive conditions. Integration of this community necessitates combating deeply rooted societal attitudes and beliefs, which de facto demands narrative change. SBCC emerges as a critical pathway towards changing how PwIDDs are perceived altogether. The underlying objective is to consider a severely marginalized group, as PwIDDs in India, as a case to discuss a framework for deconstructing complex layers of marginalization, interventions which can be layered with an SBCC approach for effective messaging, and laying down roles of stakeholders, thus effectively sharing knowledge and findings with potential for application across contexts, communities and countries.
Background/Objectives:
Dasra's research in the Intellectual and Developmental Disability space is aimed at: Mapping India's IDD landscape to identify vulnerabilities and break points in service provision that contribute to exclusion. Conducting formative research to determine knowledge, attitudes, practices, exposure to media channels, enablers, barriers to effective communication. Providing roadmaps to work towards priority action areas for non-profits in the sector and other key stakeholders identified over the course of research including families of PwIDDs, the medical community, educators, employers etc. Showcasing noteworthy examples of interventions on-ground that can serve as an aspiration for the sector.
Description of Intervention and/or Methods/Design:
The research design is a combination of examination of secondary literature, expert interviews, and telephonic and in-person interactions with non-profit and government representatives, PwIDDs and their families, and surrounding communities. The framework adopted is a life cycle approach to understand the breadth of the sector, and challenges faced by a PwIDD at each development milestone. To better understand realities on the ground, and be close to where the exclusion actually occurs, both in urban and rural contexts, we interacted with 405 NGOs Pan-India, conducted 25 expert interviews with govt representatives, IDD self-advocates, disability rights activists, and visited the on-ground interventions of 14 champion organizations with operations across 8 states in India, and interacted with their leaders, field staff, communities they work in etc. Finally, Dasra engaged closely with these 14 organizations to connect them to funding opportunities, and offer peer learning and capacity building opportunities.
Results/Lessons Learned:
This research highlights education, employment, and lack of agency as breakpoints where othering occurs, further aggravated in rural areas. Adolescents with IDDs emerge as a critical audience affected by these breakpoints, therefore central to catalyzing inclusion. Adolescence is a confusing stage, marked with transitions to adulthood, move from school to work etc, further compounded for young adults with IDD who face the burden of exclusion by peers and community at large. An urgent need is to change narrative around IDDs. SBCC models targeting multiple stakeholder behaviours can make a positive change by highlighting PwIDDs' rights, inclusion and equality. Effective SBCC approaches include models like Special Olympics Bharat, which uses sports as tools to build PwIDDs' self-esteem, and push persons without IDD to have a positive attitude towards them. Creating opportunities for PwIDDs to advocate for rights, and meaningfully amplify the message Nothing for us, without us is also vital.
Discussion/Implications for the Field:
This study reveals huge lack of awareness around IDDs, resulting in marginalization, exclusion from all socio, cultural and economic rights, that hinders PwIDDs from achieving their full potential. Our research, while elaborating on the extent and impact of exclusion of PwIDDs, also recognizes how several initiatives are providing services and advocating for their rights. However our overarching observation is that rights of PwIDDs need further visibility and amplification. Application of SBCC theories, and running campaigns for advocating mainstreaming using SBCC approaches will help boost advocacy efforts for this marginalized community.
Abstract submitted by:
Saloni Gopani - Dasra
In a society of competing dualisms between rich and poor, urban and rural, developed and undeveloped, it is not hard to imagine the conditions and challenges that the most vulnerable members of society face. Some of the most vulnerable yet largely invisible are the 31 million persons with intellectual and developmental disabilities (PwIDDs) in India. The obstacles that PwIDDs face are multi-dimensional, including not only the disability, but also the class, caste, and gender of the individual. They are rarely afforded the same opportunities as people without disabilities and are victims of multiple instances of human rights violations and othering. Dasra conducted a research titled Count Me In' that examined the life cycle of PwIDDs to understand breakpoints contributing to exclusion. It highlights cornerstone areas of non-profit programming to enable this community's inclusion in the country's development paradigm, with opportunities to live with dignity, achieve their full potential, irrespective of perceived disadvantages in their cognitive conditions. Integration of this community necessitates combating deeply rooted societal attitudes and beliefs, which de facto demands narrative change. SBCC emerges as a critical pathway towards changing how PwIDDs are perceived altogether. The underlying objective is to consider a severely marginalized group, as PwIDDs in India, as a case to discuss a framework for deconstructing complex layers of marginalization, interventions which can be layered with an SBCC approach for effective messaging, and laying down roles of stakeholders, thus effectively sharing knowledge and findings with potential for application across contexts, communities and countries.
Background/Objectives:
Dasra's research in the Intellectual and Developmental Disability space is aimed at: Mapping India's IDD landscape to identify vulnerabilities and break points in service provision that contribute to exclusion. Conducting formative research to determine knowledge, attitudes, practices, exposure to media channels, enablers, barriers to effective communication. Providing roadmaps to work towards priority action areas for non-profits in the sector and other key stakeholders identified over the course of research including families of PwIDDs, the medical community, educators, employers etc. Showcasing noteworthy examples of interventions on-ground that can serve as an aspiration for the sector.
Description of Intervention and/or Methods/Design:
The research design is a combination of examination of secondary literature, expert interviews, and telephonic and in-person interactions with non-profit and government representatives, PwIDDs and their families, and surrounding communities. The framework adopted is a life cycle approach to understand the breadth of the sector, and challenges faced by a PwIDD at each development milestone. To better understand realities on the ground, and be close to where the exclusion actually occurs, both in urban and rural contexts, we interacted with 405 NGOs Pan-India, conducted 25 expert interviews with govt representatives, IDD self-advocates, disability rights activists, and visited the on-ground interventions of 14 champion organizations with operations across 8 states in India, and interacted with their leaders, field staff, communities they work in etc. Finally, Dasra engaged closely with these 14 organizations to connect them to funding opportunities, and offer peer learning and capacity building opportunities.
Results/Lessons Learned:
This research highlights education, employment, and lack of agency as breakpoints where othering occurs, further aggravated in rural areas. Adolescents with IDDs emerge as a critical audience affected by these breakpoints, therefore central to catalyzing inclusion. Adolescence is a confusing stage, marked with transitions to adulthood, move from school to work etc, further compounded for young adults with IDD who face the burden of exclusion by peers and community at large. An urgent need is to change narrative around IDDs. SBCC models targeting multiple stakeholder behaviours can make a positive change by highlighting PwIDDs' rights, inclusion and equality. Effective SBCC approaches include models like Special Olympics Bharat, which uses sports as tools to build PwIDDs' self-esteem, and push persons without IDD to have a positive attitude towards them. Creating opportunities for PwIDDs to advocate for rights, and meaningfully amplify the message Nothing for us, without us is also vital.
Discussion/Implications for the Field:
This study reveals huge lack of awareness around IDDs, resulting in marginalization, exclusion from all socio, cultural and economic rights, that hinders PwIDDs from achieving their full potential. Our research, while elaborating on the extent and impact of exclusion of PwIDDs, also recognizes how several initiatives are providing services and advocating for their rights. However our overarching observation is that rights of PwIDDs need further visibility and amplification. Application of SBCC theories, and running campaigns for advocating mainstreaming using SBCC approaches will help boost advocacy efforts for this marginalized community.
Abstract submitted by:
Saloni Gopani - Dasra
Source
Approved abstract for the postponed 2020 SBCC Summit in Marrakech, Morocco. Provided by the International Steering Committee for the Summit. Image credit: Dasra