| Popis: |
Sociologists have raised questions about the utility of human rights to vulnerable or marginalized social groups. One group that experiences disadvantages when it comes to their human rights, particularly economic and social rights, is individuals who have disabilities, especially those living with spinal cord injury (SCI). These individuals experience difficulty navigating medical and social resources. In addition to learning how to live with a life changing injury, people living with SCI need to learn how to negotiate structures, institutions, and bureaucracies to obtain services, supports, and resources needed for improved quality of life. Unfortunately, the navigational path is not well-defined and contains obstacles imposed by inconsistent bureaucratic processes that govern health and social structures and institutions. Health professionals “responsible” for the care of people with SCI are well aware of the barriers people with SCI face, but have limited ability to address them due to the broad, seemingly immovable policies set in place. This study examines social challenges experienced by people with SCI through the lens of human rights, representing a dual focus on people living with SCI and health professionals who are a part of their care. The theoretical perspectives shaping this work include social oppression theory, which informs the social model of disability, and a more contemporary human rights-based theory of disability. Within these complementary paradigms exists an inclusive approach to conceptualizing disability in society, where dignity and autonomy of persons are valued over ableist perspectives and practices. Based on multiple interviews with twenty people navigating the first year of life after SCI, findings reveal significant injustices negotiating insurance and access to social resources; barriers accessing sufficient and appropriate health and rehabilitative care; and obstacles to resources that are necessary for independent living in the community with a disability. These experiences are influenced by the U.S. liberal welfare state. Interviews with health professionals show that they have not considered the injustices experienced by people with SCI in the context of human rights. While health professionals were largely unaware of disability-relevant human rights doctrine, they were receptive to learning ways to implement principles of human rights into their care of people with SCI.This study demonstrates how external structural factors within the U.S. healthcare system influence experiences seeking resources for recovery and community reintegration after SCI. It contributes to expanding sociological scholarship on human rights and disability, including discourse on the utility of a human rights for people with disabilities in a liberal welfare state. This work provides a foundation for policy makers, advocates, human rights activists and other stakeholders to develop humanistic approaches toward facilitating societal integration for people with disabilities. |
