2019 Theses Doctoral
“My work belies my mental illness”: The motivations for and impacts of mental health advocacy among individuals with psychiatric disabilities
This study explores mental health advocacy among individuals with psychiatric disabilities in the New York State (NYS) adult home system. This system has garnered longstanding public concern over the unsafe and unjust conditions in which its residents live. In New York City (NYC) a unique organization, Adult Home Advocates (AHA), supports a group of residents (called peer advocates) to advocate for their rights. I integrate literature on health and mental health advocacy and movements with the concept of mental health recovery to consider how AHA participation may impact recovery for peer advocates and others living in the adult home system.
I use Brown et al.'s (2010) policy ethnography approach to study sociolegal, organizational, and individual contexts in which peer advocates work and live. From May 2013 to August 2017 I conducted peer advocate (n=36) interviews and member checks, participant observations (n=154), archival document research, and initiated policy advocacy work. This study is guided by four research questions:
1) How may the sociolegal and organizational environments - - including an unfolding shift in the sociolegal environment - - influence mental health advocacy among individuals with psychiatric disabilities? (Chapter 3, p.41)
2) How may individual characteristics - - specifically, mental health recovery characteristics - - influence mental health advocacy among individuals with psychiatric disabilities? (Chapter 4, p.90)
3) What are the motivations for mental health advocacy among individuals with psychiatric disabilities? (Chapter 5, p.134)
4) What are the impacts of mental health advocacy among individuals with psychiatric disabilities? (Chapter 6, p.182)
I use conventional content analysis (Hsieh & Shannon, 2005), with mental health recovery as a sensitizing concept, to organize and analyze data. I report on findings from the sociolegal to individual levels. First, the sociolegal environment includes patterns of unsafe, unhealthy, and socially isolating conditions within adult homes; even as a legal settlement (O’Toole v. Cuomo) helps residents move out, troubling implementation practices perpetuate these unjust conditions. AHA enters this environment with a commitment to help adult home residents advocate for themselves, though it is a small organization in terms of budget, staffing, and scope. Its size is both a key strength and limitation, as it furthers its mission-driven work, yet impedes training and support for peer advocates.
I also report on findings specific to peer advocate participants (n=36). I use six mental health recovery domains - - including a sociolegal domain I develop to explore justice and rights issues - - to describe recovery as heterogeneous and dynamic across both individual domains and individual participants. Participants’ motivations for advocacy are also heterogeneous, with three types salient: 1) self-advocacy, 2) purpose, and 3) identity. Further, these motivations lead to four types of advocacy activities: 1) self-advocacy, 2) self-help, 3) advocate leader, and 4) advocate activist. Finally, I find that advocacy involvement does impact participants, both positively and negatively. I return to the six recovery domains used above to discuss how mental health advocacy brings into relief potential means of furthering mental health recovery for individuals with psychiatric disabilities.
This item is currently under embargo. It will be available starting 2021-02-11.
More About This Work
- Academic Units
- Social Work
- Thesis Advisors
- Lukens, Ellen
- Ph.D., Columbia University
- Published Here
- February 15, 2019