Date Presented 04/05/19
Introducing disability study concepts to mental-health service users and providers has the potential to improve access to self-determination for mental-health service users. OTs who understand how psychiatric disability is socially constructed can be instrumental in supporting the shift in the power relationship between users and providers, thus opening up greater access to community activities and occupations for those who seek our services.
Primary Author and Speaker: Lisa Mahaffey
PURPOSE: Mental health service providers have increasingly identified self-determination as a goal of the service relationship. Despite that goal, the literature continues to describe a power relationship that favors providers and provider systems and limits access to self-determination. This study explores how a group of service users and providers from a community mental health center in Illinois, develop a shared understanding of disability from a civil and human rights perspective as a way to foster self-determination.
DESIGN: The study used an emancipatory approach called collaborative inquiry (CI). CI is a participatory research method that uses cycles of action and reflection to introduce new ideas and concepts and then reflect on what was learned.
METHOD: Participants completed individual interviews to determine their baseline understanding of disability, disability rights, and self-determination. Participants then attended 11 groups, one introductory reflection group and five monthly CI cycles of action and reflection. During the action groups participants were taught concepts of disability studies models and disability rights. Reflection groups followed one week later. The interviews and reflection groups were audio recorded, transcribed, and coded using a process of inductive thematic analysis. Trustworthiness was achieved through member checking and review of themes and subthemes by two people who were not associated with the study.
RESULTS: The analysis revealed seven overarching themes including: Disability is in the person, barriers to community participation, power relationships, stigma around psychiatric disability, rethinking disability, humanity within disability, and toward the future: “So What, Now What.” Service users felt the information increased their sense of self-determination and their confidence as disabled people. They appreciated learning about disability rights and found the social model changed their understanding of disability. Professionals and peer providers stated they are paying attention to, and addressing the social supports and barriers to living with psychiatric disability. Participants found the small group activities and discussions gave them greater insight around long held beliefs, about each other and about the helping relationship. The results of this study suggest that proponents of stigma reduction must reconsider their reliance on the use of overcoming illness stories. This study suggests that these stories serve only to increase the public’s perception of the seriousness or dangerousness of psychiatric disability.
CONCLUSIONS: People with psychiatric disabilities and those who serve them would benefit from learning about the social model of disability and disability from a civil and human rights perspective. A curriculum for introducing service users and providers to disability and mad studies, combined with a CI approach, would be an effective way to present this information and would allow for continued research on whether learning about disability studies helps foster self-determination and a sense of empowerment. To be effective, it is suggested the psychiatric disability studies curriculum include modules on invisible disability and rewriting narrative stories to reflect art, culture, and shared disability history. The results also imply that Recovery Model interventions may be more effective at affording self-determination if they include training and action items around social and civil rights approaches to disability.
Occupational therapists must learn the social determinants of disability and are in a position to work with service users and providers to explore these concepts thus opening up avenues for service users to develop a greater sense of self-determination.
References
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Bray, J. N., Lee, J., Smith, L. L., & Yorks, L. (2000). Collaborative inquiry in practice: Action, reflection, and making meaning. Thousand Oaks, CA: SAGE Publications, Inc.
Corrigan, P. W., Angell, B., Davidson, L., Marcus, S. C., Salzer, M.S., Kottsieper, P., Larson, J. E., Mahoney, C.A., O'Connell, M. J., & Sanhope, V. (2012). From adherence to self-determination: Evolution of a treatment paradigm for people with serious mental illness. Psychiatric Services, 63, 169-173, doi:10.1176/appi.ps.201100065.
Lee, D. Hammel, J.,& Wilson, T. (2016). A community living management program for people with disabilities who have moved out of nursing homes: A pilot study. Disability and Rehabilitation, 38, 754-760. DOI: 10.3109/09638288.2015.1060266.
