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Let's Try to Change It: Psychiatric Stigmatization, Consumer/Survivor Activism, and the Link and Phelan Model

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Let's Try to Change It: Psychiatric Stigmatization, Consumer/Survivor Activism, and the Link and Phelan Model Portland State University PDXScholar Dissertations and Theses Dissertations and Theses 1-1-2012 Let's Try to Change It: Psychiatric Stigmatization, Consumer/Survivor Activism, and the Link and Phelan Model María Jimena Alvarado Chavarría Portland State University Follow this and additional works at: https://pdxscholar.library.pdx.edu/open_access_etds Let us know how access to this document benefits ou.y Recommended Citation Alvarado Chavarría, María Jimena, "Let's Try to Change It: Psychiatric Stigmatization, Consumer/Survivor Activism, and the Link and Phelan Model" (2012). Dissertations and Theses. Paper 904. https://doi.org/10.15760/etd.904 This Dissertation is brought to you for free and open access. It has been accepted for inclusion in Dissertations and Theses by an authorized administrator of PDXScholar. Please contact us if we can make this document more accessible: [email protected]. Let’s Try to Change It: Psychiatric Stigmatization, Consumer/Survivor Activism, and the Link and Phelan Model by María Jimena Alvarado Chavarría A dissertation submitted in partial fulfillment of the requirements for the degree of Doctor of Philosophy in Applied Psychology Dissertation Committee: Janice Haaken, Chair Keith Kaufman Eric Mankowski Melissa Thompson Yves Labissière Portland State University 2012 i Abstract Stigma has been described as the most significant obstacle to quality of life for individuals with major psychiatric diagnoses (Sartorious, 1998). Much of the psychological literature on stigma focuses on individual attributes and interactions at the micro level, rather than macro level dynamics. In critiquing this traditional focus, Link and Phelan (2001) present a model in which stigma ensues when labeling, stereotyping, separation, status loss, and discrimination co-occur in a situation of power imbalance. Even as the model fills a gap in conceptualizing stigma, its emphasis on power is unidirectional and fails to account for power as a form of resistance to stigmatization. This study explores the question of how a consumer/survivor activist perspective can inform the Link and Phelan model of stigma. A semi-structured interview methodology was used to gather qualitative data on the perspectives of 10 activists who are both the targets of stigma and active change agents in resisting stigma. The content of the interviews was thematically analyzed based on an iterative coding approach in order to identify the points of overlap with and divergence from the Link and Phelan model. The results of the study support the applicability of the model for psychiatric stigma. The participants’ experiences illustrate which aspects of stigmatization take precedence in this context, indicating significant points for intervention. The anti-stigma work discussed by the participants illustrates the power of grassroots resistance, expanding the understanding of power presented in the model. Emergent discursive themes include the importance of similarity, the rejection of negative portrayals of mental illness, and a focus on a shared continuum of human experience. Participants’ emphasis on the ii importance of having their voices silenced was a particularly recurring motif. Several respondents challenge the premises of the Link and Phelan model. These participants emphasize the positive aspects of diagnosis and labeling, while several other participants reject the choice of the term stigma because it may obscure the structural aspects of discrimination. These findings can serve as a guideline for designing future interventions, and focusing on strategies for social change. iii Table of Contents Abstract................................................................................................................................ i List of Tables ...................................................................................................................... v Chapter 1: Introduction....................................................................................................... 1 Background to the Study................................................................................................. 8 Guilty Except for Insanity documentary......................................................................... 9 Chapter 2: Literature review ............................................................................................. 13 1. Psychiatry and Culture.............................................................................................. 14 The anti-psychiatry movement. ................................................................................ 20 2. The Link and Phelan model. ..................................................................................... 30 Psychiatric stigma and the medical model................................................................ 37 3. Modes of Resistance and the Consumer-Survivor Movement ................................. 45 Peer support services................................................................................................. 49 The Oregon Mental Health Consumer and Psychiatric Survivor Coalition. ............ 54 Chapter 3: Methods........................................................................................................... 58 Data Collection ............................................................................................................. 60 Interviews.................................................................................................................. 61 Interview synopsis and guide................................................................................ 62 Interview script: .................................................................................................... 64 Participants............................................................................................................ 66 Data Management and Analysis ................................................................................... 72 Chapter 4: Findings of the Study ...................................................................................... 77 Overview....................................................................................................................... 77 1. Labeling .................................................................................................................... 80 2. Stereotyping .............................................................................................................. 96 3. Separation ............................................................................................................... 110 4. Status loss and discrimination................................................................................. 123 5. Power ...................................................................................................................... 142 5A. Oppression. ...................................................................................................... 143 5B. Resistance......................................................................................................... 162 Chapter 5: Discussion ..................................................................................................... 182 Overview..................................................................................................................... 182 Limitations of the Study and Future Research............................................................ 182 Findings and Interpretations ....................................................................................... 187 1. Labeling. ............................................................................................................. 189 2. Stereotyping. ....................................................................................................... 190 3. Separation. .......................................................................................................... 192 4. Status loss and discrimination............................................................................. 193 5. Power. ................................................................................................................. 194 5A. Oppression. .................................................................................................. 197 5B. Resistance..................................................................................................... 200 Summary of contribution. ........................................................................................... 204 iv References....................................................................................................................... 211 Appendix A: Initial contact email................................................................................... 226 Appendix B: Initial coding guide.................................................................................... 228 Appendix C: Entire interview transcript......................................................................... 231 v List of Tables Table 1: Organizations represented by participants……………………………………71 1 Chapter 1: Introduction The stigmatization of those who suffer mental distress has dire consequences for those who are targeted, exacerbating the difficulties they face to the point where it is not easy to distinguish the symptoms that are caused by mental illness from those that are brought on by the effects of stigma (1997). Stigma has been touted as the most significant
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