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The stigma of disease and disability. Understanding causes and overcoming injustices.
Disease and disability strike with a double whammy: Not only do they cause pain, distress, and loss, but they also trigger a social reaction, and the prejudice and discrimination that often accompany illness can be as limiting as the condition itself. Health care providers have made great strides in understanding and treating diseases, and social scientists have likewise made advances in explaining a frequent corollary of illness, stigma. Partnering with advocacy groups, they have taken large first steps to address the impact of stigma. For some, the focus on stigma may take discussion of illness into a strange direction, beyond health and wellness into issues related to social opportunity. Stigma robs people labeled “ill” of their right to equal opportunity with respect to jobs, housing, health care, relationships, faith-based communities, friends, communities, and legal protections. The purpose of this book is to advance our scientific knowledge and to further the advocates’ agenda. Stigma, prejudice, and discrimination seem to be the purview of racists, sexists, ageists, and other such angry groups. Stigma has been described as a public phenomenon (the kind of social distance, for example, that alienates the public from people with varied illnesses) and as a personal harm because of its impact on self-esteem and self-efficacy after the person internalizes it. Stigma has also been described in terms of label avoidance; the patient does not seek out treatment or drops out prematurely in order to escape the stigmatizing label of a condition. It occurs as an institutional and structural phenomenon, the kind that manifests as either purposeful or unintended laws and policies that unfairly restrict people with the disease.