Living through Disability, a Caregiver’s Perspective on Development: Phenomenological Explorations of Disability and Insights on ‘Inclusive Development’

The paper is an attempt to construct the lived experiences of the caregivers of children with Autism Spectrum Disorder. The disability of a child has a profound influence on the quality of life of a family especially the care-givers. Coping with this phenomenon in one’s life leads to a paradigm shift in one’s life’s priorities. A redefining of meanings and priorities of one’s life unveils as one finds oneself within a process of re-socialization due to the experience of disability. The paper has attempted to use the phenomenological perspective to understand the structure of caregiving, the themes have been designed into: autism as deviance, coping with denial (fear, superstition) and social stigma, accessing medico-therapeutic services, adaptation to a new ‘routine’ and life-priorities, development of resilience, faith and happiness (thriving within the context of disability), trying to understand and explore various institutional and non-institutional factors that give rise to these experiences. The already published experiences of different caregiver categories have been used to examine the author’s own lived experience as a caregiver. It has been found that although there is a universality/commonness to the autism caregiving experience but the socio-cultural and religious contexts within which these are situated and the socio-economic profile of the caregivers constitute unique differences in the entire experience. Values like Brahminism also impact the entire experience. The most important factor however is the availability and accessibility of medico-therapeutic infrastructure within one’s locality that shapes the autism care-giving experience according to the author. This underscores the importance of the state machinery (support systems) to aid policy. According the World Health Organization, an estimated 1.3 billion people experience significant disability. This represents 16% of the world’s population, or 1 in 6 of us. They face many health inequities.[1]About 1 in 100 children has autism. The abilities and needs of autistic children vary and can change over time, some of them have severe disabilities and require life-long care and support.[2] Health inequities that these people face arise from structural barriers encountered by persons with disabilities, including problem of access, expression, stigma, discrimination, poverty, exclusion from education and employment, and barriers faced in the health system itself. Thus, it can be summarized as exclusion.[3]