Role of Civil Society Organization in the Inclusion of People with Deafblindness in South Asia: A Case Study on Sense International India

Despite the impressive aggregate growth of India as a developing nation in the past few years, its benefits have hardly reached the marginalized sections of the society, including people with disabilities. Vulnerability and conditions of poverty are still prevalent which make them the most abject under-served populations. The role of civil society organizations is indispensable in a scenario like this, where these organizations are instrumental in ensuring that the rights of the under-served population are fulfilled and needs met. Mostly, these civil society organizations play a complementary role and act as the third leg to development together with government and development partners (donors). In some instances, a few civil society organizations take a different stand and create a parallel system of support services for those marginalized populations whose identity is not recognized in the legal system of the country and almost no welfare policies/services exist for them. Similar is the condition with Sense International India, which was founded in 1997 to cater to the needs of people with deafblindness in India. Until December 2016, deafblindness was not recognized as a distinct disability in India and hence their access to disability welfare services was limited. Despite the fact that India is adopting a progressive disability policy framework, rigorous efforts are required to create awareness on disability rights, inclusion, and equal opportunity for people with more than one disability condition such as deafblindness. Deafblindness is a combined dual sensory impairment of vision and hearing causing challenges in communication, mobility, and access to information from the outside world. Persons with deafblindness are mostly denied their access to medical, educational, livelihood, and welfare services for people with disabilities. Many children with deafblindness are denied admissions and remain isolated without getting any kind of medical or educational interventions supported by governments. In the absence of recognition under Indian laws, persons with deafblindness face extreme discrimination and are considered non-existent and no provisions are made for them. There is an estimated population of 500,000 persons with deafblindness in India (there is no government survey/data available in India). Currently, persons with deafblindness in India are supported through the collective efforts of Sense International India and its nation-wide network of 59 partner organizations in 22 states of India. Sense International India, or Sense India, is a civil society organization working throughout India to support services for deafblind people. Through its network of partners, Sense India is supporting over 77,500 persons with deafblindness. Sense India, along with its partner organizations, advocated for the rights of people with deafblindness, achieving significant success at two levels: first, the inclusion of deafblindness in the new disability Act “The Rights of Persons with Disabilities Act, 2016,” and, second, the inclusion of the rubella vaccine in the nation-wide immunization programme are two of the most important and recent achievements through this advocacy. Sense India has also successfully initiated its intervention model in South Asia and has trained professionals in Bangladesh, Malaysia, Nepal, and Sri Lanka to initiate deafblind interventions in their respective nations. Sense India also played the role of catalyst in developing human resources in terms of teachers/educators and has facilitated the development of teacher training courses on deafblindness by the Rehabilitation Council of India. This chapter uses a case-study approach and examines the role of Sense India as a civil society organization in the inclusion of persons with deafblindness in India. This chapter illuminates the institutional journey of Sense India and how it has transformed the social welfare interventions for persons with deafblindness in the country with a welfare as well as a rights-based approach. This chapter uses multiple sources of evidence in building the case and draws upon organizational documents, archived project reports, and media articles to highlight the strengths of and challenges faced by the organization in the process of transforming the welfare landscape for deafblind-specific services in India in the past two decades.