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Dimensions of invisibility: insights into the daily realities of persons with disabilities living in rural communities in India

GUPTA, Shivani
DE WITTE, Luc P
MEERSHOEK, Agnes
2020

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Persons with disabilities in rural India do not have the opportunity to lead a self-determined life and be included in their community as required by the convention on the rights of persons with disabilities. To investigate their experience of living everyday life and the amount of agency they are able to exercise, in-depth interviews were undertaken. The Capability Approach (CA) was used to ana- lyse the situation that was seen in terms of outcome of the interplay between internal and external factors resulting in loss of agency. The results show that the dependency they experience due to lack of adequate support to undertake activities and being completely dependent on the family places them in a vicious circle of ‘self-worthlessness’. Reducing the dependency disabled people face and chang- ing perceptions of the community towards disability may break this circle.

Public health, research and rights: the perspectives of deliberation panels with politically and socially active disabled people

BERGHS, Maria
ATKIN, Karl
GRAHAM, Hilary
HATTON, Chris
THOMAS, Carol
2017

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Public health research purports to provide the evidence base for policies, programmes and interventions to improve the health of a population. However, there is increasing awareness that the experiences of disabled people have played little part in informing this evidence base. This paper discusses one aspect of a study commissioned by England’s National Institute for Health Research (NIHR) to review the implications for public health of theories and models of disability. This part of the study focused on the development of a tool or decision aid to promote ethical inclusion of disabled people in public health randomised controlled trials (RCTs) and evaluative research. The tool was introduced at four regional ‘deliberating panels’ involving politically and socially active disabled people. In addition, we held a panel with public health professionals. The deliberation panels debated how the focus of public health was narrowing, why disability was excluded and positive and negative issues with using rights to guide research and evaluative practice. Politically active disabled people argued for a social model of human rights to guide any rights based tools or decision aids in public health and disability research.

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