Mental Health Disabilities, Shame and the Family: The Good, the Bad, the Chosen, and the Imagined
Main Article Content
Keywords
disability, shame, family
Abstract
Based on ethnographic research examining the lives of individuals with mental health disabilities in Suffolk County, New York, this paper highlights key aspects of deinstitutionalization, intersectional shame factors impacting disabilities, and community-based mental health care. Findings indicate that individuals’ families of origin can promote and maintain shame and psychological distress.
Mental Health Disabilities, Shame and the Family: The Good, the Bad, the Chosen, and the Imagined by Cassandra Evans is licensed under a Creative Commons Attribution 4.0 International License. Based on a work at https://rdsjournal.org. Permissions beyond the scope of this license may be available at https://www.rds.hawaii.edu/.
References
Back, L. T., Keys, C. B., McMahon, S. D., & O’Neill, K. O. (2016). How we label students with disabilities: A framework of language use in an urban school district in the United States. Disability Studies Quarterly, 36(4). Retrieved from http://dsq-sds.org/article/view/4387/4481
Baladerian, N. J. (2009). Domestic violence and individuals with disabilities: Reflections on research and practice. Journal of Aggression, Maltreatment and Trauma. 18, 153–161.
Ben-Moshe, L. (2011). Disabling incarceration: Connecting disability to divergent confinement in the USA. Critical Sociology, 39(3), 385–403. doi: 10.1177/0896920511430864.
Biehl, J. (2004). Life of the mind: The interface of psychopharmaceuticals, domestic economies, and social abandonment. American Ethnologist, 31(4), 475–496.
Bloom, S. L. (2013). Creating Sanctuary: Toward the evolution of sane societies, Second Edition. New York: Routledge.
Bloom, S. L. (2016). Advancing a national cradle-to-grave public health agenda. Journal of Trauma & Dissociation, 17(4), 383–396.
Bloom, S. L., & Farragher, B. (2010). Destroying sanctuary: The crisis in human service delivery. New York: Oxford University Press.
Carey, A. C., Block, P., & Scoth, R. K. (2019). Sometimes allies: Parent-led disability organizations and social movements. Disability Studies Quarterly, 39(1). doi: http://dx.doi.org/10.18061/dsq.v39i1.6281
Clapton, N. E., Williams, J., & Jones, R. S. P. (2018). The role of shame in the development and maintenance of psychological distress in adults with intellectual disabilities: A narrative review and synthesis. Journal of Applied Research in Intellectual Disabilities, 31(3), 343–359
Crenshaw, K. W. (1991). Mapping the margins: Intersectionality, identity politics, and violence against women of color. Stanford Law Review, 43(6), 1241–1299.
Crenshaw, K. W. (2016). On intersectionality: Essential writings. New York: New Press.
Das, V., & Addlakha, R. (2001). Disability and domestic citizenship: Voice, gender, and the making of the subject. Public Culture, 13(3), 511–531.
Desjarlais, R. (1994). Struggling along: The possibilities for experience among the homeless mentally ill. American Anthropologist, 96(4), 886–901.
Deutsch, A. (1949). The mentally ill in America: A history of their care and treatment from colonial times. New York: Columbia University Press.
Dixon, L., Kurek, J., Susin, J., Laitman, A., Guzman, K., & Tabakman, L. (2015, October 8). The family and recovery—what works and what doesn’t. In-person panel presentation for Mental Health Awareness Day at Pilgrim State Hospital.
Erevelles, N., & Minear, A. (2010). Unspeakable offenses: Untangling race and disability in discourses of intersectionality. Journal of Literacy & Cultural Disability Studies, 4(2), 127–145.
Fanon, F. (2004). The Wretched of the Earth. New York: Grove Press.
Felitti, V. J., Anda, R. F., Nordenberg, D., Williamson, D. F., Spitz, A. M., Edwards, V., . . . Marks, J. S. (1998). Relationship of childhood abuse and household dysfunction to many of the leading causes of death in adults. The Adverse Childhood Experiences (ACE) Study. American Journal of Preventive Medicine. 14: 245–258. http://dx.doi.org/10.1016/ S0749-3797(98)00017-8
Friedner, M. (2015). Valuing deaf worlds in urban India. New Brunswick: New Jersey. Rutgers University Press.
Frischmuth, S. G. (2013). Keep your sunny side: A street-level look at homelessness. Culture, Medicine, and Psychiatry, 38, 312–323.
Gamwell, L., & Tomes, N. (1995). Madness in America: Cultural and medical perceptions of mental illness before 1914. Ithaca: Cornell University Press.
Garcia, A. (2010). The pastoral clinic: Addiction and dispossession along the Rio Grande. Berkeley, CA: University of California Press.
Goffman, E. (1961). Asylums; Essays on the social situation of mental patients and other inmates. Garden City, NY: Anchor Books.
Granovetter, M. S. (1973). The strength of weak ties. American Journal of Sociology. 78(6), 1360–1380.
Hatzenbuehler, M. L., Phelan, J. C., & Link, B. G. (2013). Stigma as a fundamental cause of population health inequalities. American Journal of Public Health, 103(5), 813–821. doi:10.2105/AJPH.2012.301069
Isobel, S. (2015). Because that’s the way it’s always been done: Reviewing the nurse-initiated rules in a mental health unit as a step toward trauma-informed care. Issues in Mental Health Nursing, 36(4), 272–278.
Jenkins, J. H. (2015). Extraordinary conditions: Culture and experience in mental illness. Oakland, CA: University of California Press.
Jenkins, J. H., & Carpenter-Song, E. A. (2008). Stigma despite recovery: Strategies for living in the aftermath of psychosis. Medical Anthropology Quarterly, 22(4), 381–409.
Kalvin, S. (2015, June 3). Volunteer museum tour operator and employee of Pilgrim Psychiatric Center. In-person interview and tour proceedings at Long Island Psychiatric Museum, Brentwood, NY.
Kessler, R. C. (2000). Posttraumatic stress disorder: The burden to the individual and society. Journal of Clinical Psychiatry. 61, 4–12.
Liebowitz, C. (2015). I am disabled: On identity-first versus people-first language. Retrieved on July 23, 2019, from https://thebodyisnotanapology.com/magazine/i-am-disabled-on-identity-first-versus-people-first-language/
Lloyd, S., & Moreu, N. (2011). Pursuit of a ‘normal life’: Mood, anxiety, and their disordering. Medical Anthropology, 30(6), 591–609.
Luhrmann, T. M. (2007). Social defeat and the culture of chronicity: Or, why schizophrenia does so well over there and so badly here. Culture, Medicine and Psychiatry, 31, 135–172.
Morrigan, C. (2017). Failure to comply: Madness and/as testimony. Canadian Journal of Disability Studies, 6(3), 61–91.
Mauritz, M. W., Goossens, P. J., Draijer, N., & van Achterberg, T. (2013). Prevalence of interpersonal trauma exposure and trauma-related disorders in severe mental illness. European Journal of Psychotraumatology, 4, 10.3402/ejpt.v4i0.19985.
Mock, S. E., & Arai, S. M. (2011). Childhood trauma and chronic illness in adulthood: mental health and socioeconomic status as explanatory factors and buffers. Frontiers in psychology, 1, 246. doi:10.3389/fpsyg.2010.00246
Mueser, K., Rosenberg, S., Goodman, L. A., & Trumbetta, S. L. (2002). Trauma, PTSD and the course of severe mental illness: And interactive model. Schizophrenia Research, 253,123–143. doi:10.1016/S0920-9964(01)00173-6.
Mueser, K., Trumbetta, S. L., & Rosenberg, S. (1998). Trauma and posttraumatic stress disorder in severe mental illness. Journal of Consulting and Clinical Psychology. 66, 493–499.
National Alliance on Mental Illness. (2019). Mental health facts in America fact sheet. Retrieved August, 5, 2019 from https://www.nami.org/NAMI/media/NAMI-Media/Infographics/GeneralMHFacts.pdf.
National Center for Trauma Informed Care (NCTIC). (2013). Creating a place of healing and forgiveness: The trauma-informed care initiative at the women’s community correctional center of Hawaii. National Association of State Mental Health Program Directors, Advocates for Human Potential, Inc., Substance Abuse and Mental Health Services Administration. Retrieved September 24, 2017, from https://www.nasmhpd.org/sites/default/files/7014_hawaiian_trauma_brief_2013(1).pdf
National Institutes of Mental Health (NIMH). (2016). Prevalence of serious mental illness among U.S. adults by age, sex, and race. Retrieved December, 27, 2018, from https://www.nimh.nih.gov/health/statistics/mental-illness.shtml#part_154787.
Neugeboren, J. (2006). Transforming madness: My brother, madness, and survival. New Brunswick, NJ: Rutgers University Press.
Pleck, E. (2004). Domestic tyranny: The making of American social policy against family violence from colonial times to the present. Chicago: University of Chicago Press.
Polaski, L. (2003). The farm colonies: Caring for New York City’s mentally ill in Long Island’s state hospitals. Amityville, NY: Official Offset Printing Corporation.
Reaume, G. (2002). Lunatic to patient to person: Nomenclature in psychiatric history and the influence of patients’ activism in North America. International Journal of Law and Psychiatry, 25, 405–426.
Reaume, G. (2006). Mad people’s history. Radical History Review, 94, 170–182.
Seng, J. S., Lopez, W. D., Sperlich, M., Hamama, L., & Meldrum, C. D. R. (2012). Marginalized identities, discrimination burden, and mental health: Empirical exploration of an interpersonal-level approach to modeling intersectionality. Social Science & Medicine, 75(12), 2437–2445.
Sequenzia, A. (2016). Person first language and ableism. Retrieved July 23, 2019, from Ollibean: https://ollibean.com/person-first-language-and-ableism/
Shonkoff, J. P. (2016). Capitalizing on advances in science to reduce the health consequences of early childhood adversity. Journal of American Medical Association Pediatrics, 170(10), 1003–1007.
Stumbo, S. P., Yarborough, B. J. H., Paulson, R. I., & Green, C. A. (2015). The impact of adverse child and adult experiences on recovery from serious mental illness. Psychiatric Rehabilitation Journal, 38(4), 320–327.
Substance Abuse Mental Health Services Administration (SAMHSA). (2014). SAMHSA’s concept of trauma and guidance for a trauma-informed approach. Retrieved on February 7, 2016, from https://store.samhsa.gov/system/files/sma14-4884.pdf
Sweeney, A., Filson, B., Kennedy, A., Collinson, L., & Gillard, S. (2018). A paradigm shift: relationships in trauma-informed mental health services. BJPsych advances, 24(5), 319–333. doi:10.1192/bja.2018.29
Titchkosky, T. (2001). Disability: A rose by any other name? “People-first” language in Canadian society. Canadian Review of Sociology and Anthropology, 38(2),125–140.
Watson, S., Thorburn, K., Everett, M., Fisher, K. R. (2014). Care without coercion—mental health rights, personal recovery and trauma-informed care. Australian Journal of Social Issues, 49(4), 529-–549.
Weston, K. (1997). Families we choose: Lesbians, gays, kinship. New York: Columbia University Press.
Whitaker, R. (2010). Anatomy of an epidemic: Magic bullets, psychiatric drugs, and the astonishing rise of mental illness in America. New York: Crown Publishers.
Baladerian, N. J. (2009). Domestic violence and individuals with disabilities: Reflections on research and practice. Journal of Aggression, Maltreatment and Trauma. 18, 153–161.
Ben-Moshe, L. (2011). Disabling incarceration: Connecting disability to divergent confinement in the USA. Critical Sociology, 39(3), 385–403. doi: 10.1177/0896920511430864.
Biehl, J. (2004). Life of the mind: The interface of psychopharmaceuticals, domestic economies, and social abandonment. American Ethnologist, 31(4), 475–496.
Bloom, S. L. (2013). Creating Sanctuary: Toward the evolution of sane societies, Second Edition. New York: Routledge.
Bloom, S. L. (2016). Advancing a national cradle-to-grave public health agenda. Journal of Trauma & Dissociation, 17(4), 383–396.
Bloom, S. L., & Farragher, B. (2010). Destroying sanctuary: The crisis in human service delivery. New York: Oxford University Press.
Carey, A. C., Block, P., & Scoth, R. K. (2019). Sometimes allies: Parent-led disability organizations and social movements. Disability Studies Quarterly, 39(1). doi: http://dx.doi.org/10.18061/dsq.v39i1.6281
Clapton, N. E., Williams, J., & Jones, R. S. P. (2018). The role of shame in the development and maintenance of psychological distress in adults with intellectual disabilities: A narrative review and synthesis. Journal of Applied Research in Intellectual Disabilities, 31(3), 343–359
Crenshaw, K. W. (1991). Mapping the margins: Intersectionality, identity politics, and violence against women of color. Stanford Law Review, 43(6), 1241–1299.
Crenshaw, K. W. (2016). On intersectionality: Essential writings. New York: New Press.
Das, V., & Addlakha, R. (2001). Disability and domestic citizenship: Voice, gender, and the making of the subject. Public Culture, 13(3), 511–531.
Desjarlais, R. (1994). Struggling along: The possibilities for experience among the homeless mentally ill. American Anthropologist, 96(4), 886–901.
Deutsch, A. (1949). The mentally ill in America: A history of their care and treatment from colonial times. New York: Columbia University Press.
Dixon, L., Kurek, J., Susin, J., Laitman, A., Guzman, K., & Tabakman, L. (2015, October 8). The family and recovery—what works and what doesn’t. In-person panel presentation for Mental Health Awareness Day at Pilgrim State Hospital.
Erevelles, N., & Minear, A. (2010). Unspeakable offenses: Untangling race and disability in discourses of intersectionality. Journal of Literacy & Cultural Disability Studies, 4(2), 127–145.
Fanon, F. (2004). The Wretched of the Earth. New York: Grove Press.
Felitti, V. J., Anda, R. F., Nordenberg, D., Williamson, D. F., Spitz, A. M., Edwards, V., . . . Marks, J. S. (1998). Relationship of childhood abuse and household dysfunction to many of the leading causes of death in adults. The Adverse Childhood Experiences (ACE) Study. American Journal of Preventive Medicine. 14: 245–258. http://dx.doi.org/10.1016/ S0749-3797(98)00017-8
Friedner, M. (2015). Valuing deaf worlds in urban India. New Brunswick: New Jersey. Rutgers University Press.
Frischmuth, S. G. (2013). Keep your sunny side: A street-level look at homelessness. Culture, Medicine, and Psychiatry, 38, 312–323.
Gamwell, L., & Tomes, N. (1995). Madness in America: Cultural and medical perceptions of mental illness before 1914. Ithaca: Cornell University Press.
Garcia, A. (2010). The pastoral clinic: Addiction and dispossession along the Rio Grande. Berkeley, CA: University of California Press.
Goffman, E. (1961). Asylums; Essays on the social situation of mental patients and other inmates. Garden City, NY: Anchor Books.
Granovetter, M. S. (1973). The strength of weak ties. American Journal of Sociology. 78(6), 1360–1380.
Hatzenbuehler, M. L., Phelan, J. C., & Link, B. G. (2013). Stigma as a fundamental cause of population health inequalities. American Journal of Public Health, 103(5), 813–821. doi:10.2105/AJPH.2012.301069
Isobel, S. (2015). Because that’s the way it’s always been done: Reviewing the nurse-initiated rules in a mental health unit as a step toward trauma-informed care. Issues in Mental Health Nursing, 36(4), 272–278.
Jenkins, J. H. (2015). Extraordinary conditions: Culture and experience in mental illness. Oakland, CA: University of California Press.
Jenkins, J. H., & Carpenter-Song, E. A. (2008). Stigma despite recovery: Strategies for living in the aftermath of psychosis. Medical Anthropology Quarterly, 22(4), 381–409.
Kalvin, S. (2015, June 3). Volunteer museum tour operator and employee of Pilgrim Psychiatric Center. In-person interview and tour proceedings at Long Island Psychiatric Museum, Brentwood, NY.
Kessler, R. C. (2000). Posttraumatic stress disorder: The burden to the individual and society. Journal of Clinical Psychiatry. 61, 4–12.
Liebowitz, C. (2015). I am disabled: On identity-first versus people-first language. Retrieved on July 23, 2019, from https://thebodyisnotanapology.com/magazine/i-am-disabled-on-identity-first-versus-people-first-language/
Lloyd, S., & Moreu, N. (2011). Pursuit of a ‘normal life’: Mood, anxiety, and their disordering. Medical Anthropology, 30(6), 591–609.
Luhrmann, T. M. (2007). Social defeat and the culture of chronicity: Or, why schizophrenia does so well over there and so badly here. Culture, Medicine and Psychiatry, 31, 135–172.
Morrigan, C. (2017). Failure to comply: Madness and/as testimony. Canadian Journal of Disability Studies, 6(3), 61–91.
Mauritz, M. W., Goossens, P. J., Draijer, N., & van Achterberg, T. (2013). Prevalence of interpersonal trauma exposure and trauma-related disorders in severe mental illness. European Journal of Psychotraumatology, 4, 10.3402/ejpt.v4i0.19985.
Mock, S. E., & Arai, S. M. (2011). Childhood trauma and chronic illness in adulthood: mental health and socioeconomic status as explanatory factors and buffers. Frontiers in psychology, 1, 246. doi:10.3389/fpsyg.2010.00246
Mueser, K., Rosenberg, S., Goodman, L. A., & Trumbetta, S. L. (2002). Trauma, PTSD and the course of severe mental illness: And interactive model. Schizophrenia Research, 253,123–143. doi:10.1016/S0920-9964(01)00173-6.
Mueser, K., Trumbetta, S. L., & Rosenberg, S. (1998). Trauma and posttraumatic stress disorder in severe mental illness. Journal of Consulting and Clinical Psychology. 66, 493–499.
National Alliance on Mental Illness. (2019). Mental health facts in America fact sheet. Retrieved August, 5, 2019 from https://www.nami.org/NAMI/media/NAMI-Media/Infographics/GeneralMHFacts.pdf.
National Center for Trauma Informed Care (NCTIC). (2013). Creating a place of healing and forgiveness: The trauma-informed care initiative at the women’s community correctional center of Hawaii. National Association of State Mental Health Program Directors, Advocates for Human Potential, Inc., Substance Abuse and Mental Health Services Administration. Retrieved September 24, 2017, from https://www.nasmhpd.org/sites/default/files/7014_hawaiian_trauma_brief_2013(1).pdf
National Institutes of Mental Health (NIMH). (2016). Prevalence of serious mental illness among U.S. adults by age, sex, and race. Retrieved December, 27, 2018, from https://www.nimh.nih.gov/health/statistics/mental-illness.shtml#part_154787.
Neugeboren, J. (2006). Transforming madness: My brother, madness, and survival. New Brunswick, NJ: Rutgers University Press.
Pleck, E. (2004). Domestic tyranny: The making of American social policy against family violence from colonial times to the present. Chicago: University of Chicago Press.
Polaski, L. (2003). The farm colonies: Caring for New York City’s mentally ill in Long Island’s state hospitals. Amityville, NY: Official Offset Printing Corporation.
Reaume, G. (2002). Lunatic to patient to person: Nomenclature in psychiatric history and the influence of patients’ activism in North America. International Journal of Law and Psychiatry, 25, 405–426.
Reaume, G. (2006). Mad people’s history. Radical History Review, 94, 170–182.
Seng, J. S., Lopez, W. D., Sperlich, M., Hamama, L., & Meldrum, C. D. R. (2012). Marginalized identities, discrimination burden, and mental health: Empirical exploration of an interpersonal-level approach to modeling intersectionality. Social Science & Medicine, 75(12), 2437–2445.
Sequenzia, A. (2016). Person first language and ableism. Retrieved July 23, 2019, from Ollibean: https://ollibean.com/person-first-language-and-ableism/
Shonkoff, J. P. (2016). Capitalizing on advances in science to reduce the health consequences of early childhood adversity. Journal of American Medical Association Pediatrics, 170(10), 1003–1007.
Stumbo, S. P., Yarborough, B. J. H., Paulson, R. I., & Green, C. A. (2015). The impact of adverse child and adult experiences on recovery from serious mental illness. Psychiatric Rehabilitation Journal, 38(4), 320–327.
Substance Abuse Mental Health Services Administration (SAMHSA). (2014). SAMHSA’s concept of trauma and guidance for a trauma-informed approach. Retrieved on February 7, 2016, from https://store.samhsa.gov/system/files/sma14-4884.pdf
Sweeney, A., Filson, B., Kennedy, A., Collinson, L., & Gillard, S. (2018). A paradigm shift: relationships in trauma-informed mental health services. BJPsych advances, 24(5), 319–333. doi:10.1192/bja.2018.29
Titchkosky, T. (2001). Disability: A rose by any other name? “People-first” language in Canadian society. Canadian Review of Sociology and Anthropology, 38(2),125–140.
Watson, S., Thorburn, K., Everett, M., Fisher, K. R. (2014). Care without coercion—mental health rights, personal recovery and trauma-informed care. Australian Journal of Social Issues, 49(4), 529-–549.
Weston, K. (1997). Families we choose: Lesbians, gays, kinship. New York: Columbia University Press.
Whitaker, R. (2010). Anatomy of an epidemic: Magic bullets, psychiatric drugs, and the astonishing rise of mental illness in America. New York: Crown Publishers.
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Published
Aug 13, 2019
Article Details
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Forum - Disability and Shame
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Author Biography
Cassandra Evans, City University of New York, School of Professional Studies
Cassandra Evans, Ph.D., is a disability studies scholar, Assistant Professor of Disability Studies for School of Professional Studies at City University of New York (CUNY), adjunct Health and Rehabilitation Science instructor at Stony Brook University, and an adjunct philosophy instructor at Molloy College in Hempstead, New York. She also works as an at-risk academic advisor for John Jay College of Criminal Justice (CUNY) and has worked as a rehabilitation counselor, philosophy instructor and grant writer in both California and New York colleges. Her research focuses on persistent mental health disabilities, institutionalization, and medical, feminist, and environmental ethics.