"My Work Belies My Mental Illness": Mental Health Advocacy Among Individuals with Psychiatric Disabilities

Background and Purpose: Despite increased attention in other countries, mental health advocacy is relatively understudied within U.S. mental health services and research.  Advocacy not merely for but by individuals with psychiatric disabilities is less studied still.  The purpose of this study is to explore: 1) the motivations for and 2) the impacts of advocacy involvement among individuals with psychiatric disabilities in the New York City (NYC) adult homes system.  Advocacy is salient in this context, as adult homes have been found to be in violation of the social integration mandate of the Americans with Disabilities Act (ADA), yet an estimated 5,000 individuals with psychiatric disabilities remain in NYC homes.

Methods: This study is framed by policy ethnography (Brown et al, 2010), a participatory approach that seeks to form equitable relationships with participants and disseminate research products of value to them (called policy advocacy method).  Over four and half years (April 2013 to December 2017), I employed three additional policy ethnography methods: 1) ethnographic interviews and member checks with peer advocate participants (n=36); participant observations (n=154) within NYC adult homes, at advocacy meetings, and during legal hearings; and archival research on the history of NYC adult homes and advocacy efforts around them.  Because policy ethnography does not specify an analytic approach, I used conventional content analysis (Hsieh & Shannon, 2005) with mental health recovery as a sensitizing concept, to integrate and analyze data.  Futher analytic steps involved constant comparison of ethnographic data (Altheide, 1987), hybrid matrix construction (Fereday & Muir-Cochrane, 2006) for individual peer advocate data, and negative case analysis.

Findings: I identified three key advocacy motivations among peer advocate participants: self advocacy, purpose (both “something to do” and sociolegal purpose), and identity.  Through prolonged engagement with participants and data triangulation, I nuanced motivation findings with patterns of emergent and waning advocacy.  I used mental health recovery to frame findings on advocacy impacts, exploring how advocacy may influence: clinical, physical, social, functional, and existential recovery.  I also found evidence of what I term sociolegal recovery, or how advocacy involvement may lead to both greater awareness of and action around civil and legal rights.  Finally, I found advocacy involvement may have both positive and negative influences on mental health recovery, which I illustrate through a series of thematic narratives, a hallmark of ethnography (Emerson et al., 2011).

Conclusions and Implications: This study offers three key implications.  First, it suggests mental health advocacy may offer a means of reintegrating the concept of mental health recovery with its origins in mental health movements of the 1960s and ‘70s.  In turn, advocacy may address gaps in current conceptualizations of recovery, leading to increased consideration for what Padgett et al. (2016) term “complex recovery”, or recovery sensitive to systemic forms of exclusion and oppression.  I suggest advocacy may also expand conceptualizations of recovery, bringing civil, legal and human rights to the fore and making clear more traditional recovery domains (clinical, social) are inevitably underpinned by fundamental sociolegal barriers in the lives of individuals with psychiatric disabilities.