Wearing the Label of Mental Illness: Community-Based Participatory Action Research of Mental Illness Stigma

While mental illnesses are estimated to impact the lives of almost half of the adults in the United States over their lifetimes (Kessler, Berglund, Demler, Merkangas, & Walter, 2005), misperceptions about the causes, symptoms and outcomes of mental illnesses contribute to the stigmatization of those affected by these diseases (Corrigan et al., 2002; Lauber, Anthony, Ajdacic-Gross, & Rossler, 2004; Overton & Medina, 2008; Sartouris, 2002). Despite extensive efforts to increase awareness and knowledge of mental illnesses, some studies suggest that stigmatizing attitudes and behaviors are still prevalent (Phelan, Link, Stueve, & Pescosolido, 2000; Rusch, Angermeyer, & Corrigan, 2005) and interfere with individuals seeking and fully participating in mental health care (Corrigan, 2004). Mental health self-help groups seek to address the pressing need for community-based support systems for individuals with mental illnesses (Brown, Shepherd, Wituk, & Meissen, 2008; Leggatt, 2005). From grassroots beginnings with "couples meeting in someone's living room" (Katz, 1961, p. 32), these groups have formed alliances, consortiums, associations and coalitions. One of the most prominent organizations is National Alliance for Mental Illness (NAMI), which has grown since 1979 from 250 to 1200 local affiliates in all 50 states. As a powerful national organization, the primary objectives of NAMI are support, advocacy, research, and education (NAMI, 2013). With the President's New Freedom Commission on Mental Health (2003) call for full community participation in mental health care, NAMI and other mental health self-help organizations have responded with programs such as StigmaBusters (NAMI, 2013) specifically designed to ameliorate mental illness stigma. However, a top-down approach implemented by nationally centralized mental health self-help organizations may not meet the needs of local affiliates. Understanding a community's unique and multifaceted perceptions of mental illness is a key step in the development of targeted and effective programs to mitigate stigma (Levy, 1984). Mental Illness Stigma Mental illness stigma is a complex social construct that propagates damaging stereotypes, prejudice, and discrimination (Arboleda-Florez, 2003; Walker, 2006).). Modern mental illness stigma is part of the persisting belief system initially seeded by ancient primitive civilizations, which attributed mental illnesses to supernatural forces. Religious organizations that couched mental illness in moral terms and governments and societies that sought management of social order through incarceration or isolation then amplified and further solidified these primitive beliefs as socially accepted norms (Stuart, Arboleda-Florez, & Sartorius, 2012). Today, mental illness stigma remains culturally embedded through entertainment and news media that often reinforce these ancient stereotypes (Walker, 2006) ... Though present day biomedical and behavioral sciences provide explanations for brain-based mental phenomena, offer classification systems as frameworks for treatment, and deliver therapies that can sometimes transform lives, science has not fulfilled societal demand for the elusive "cure" that eliminates inconvenient differences between individuals without addressing the price of community engagement. As one consequence of this, attempts to reduce stigma through education based solely on scientific, biological evidence can actually reinforce negative attitudes (Kvaale, Haslam, & Gottdiener, 2013). Being labeled with a mental illness such as schizophrenia, generalized anxiety, major depression, or one of the hundreds of other disorders found in the American Psychiatric Association's Diagnostic and Statistical Manual of Mental Disorders is a major deterrent to seeking help and complying with treatment plans (Alexander, 2003; Corrigan, 2004). Once an individual is labeled as mentally ill, he or she is viewed as having a host of socially unacceptable characteristics, which include being dangerous, undependable, weak-willed, lazy, and abnormal. …