Skip to main content Accessibility help

We use cookies to distinguish you from other users and to provide you with a better experience on our websites. Close this message to accept cookies or find out how to manage your cookie settings.

Close cookie message
×
Hostname: page-component-745bb68f8f-d8cs5 Total loading time: 0 Render date: 2025-01-09T10:48:19.020Z Has data issue: false hasContentIssue false

9 - Intellectual Disability Stigma

The State of the Evidence

from Part II - Impact of Stigma on Mental Health

Published online by Cambridge University Press:  28 July 2022

By
Shirli Werner  and
Katrina Scior
Edited by
David L. Vogel  and
Nathaniel G. Wade
David L. Vogel
Affiliation:
Iowa State University
Nathaniel G. Wade
Affiliation:
Iowa State University
Get access

Summary

Albeit the UN Convention of the Rights of Persons with Disabilities advocates for the right to full and active participation is society, it is well known that individuals with intellectual disabilities face great disadvantages in most domains of life. Stigma and discrimination are at the roots of the limited life opportunities available to this group of individuals. This chapter explores the state of the evidence in the field of intellectual disability stigma published since 2016. Specifically, we review 29 studies that dealt with public stigma, professional stigma, self-stigma, and family or affiliate stigma. Further, we review studies that have focused on stigma change interventions during these years. In our last section we provide a summary of the findings as well as suggestions for future research.

Keywords

intellectual disabilityreviewstigmastigma change interventions
Type
Chapter
Information
The Cambridge Handbook of Stigma and Mental Health , pp. 158 - 184
Publisher: Cambridge University Press
Print publication year: 2022

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Albert, A. B., Jacobs, H. E., & Siperstein, G. N. (2016). Sticks, stones, and stigma: Student bystander behavior in response to hearing the word “retard.” Intellectual and Developmental Disabilities, 54(6), 391–401. https://doi.org/10.1352/1934-9556-54.6.391Google Scholar
Aldersey, H. M., Kavira, S., Kiasimbua, J., et al. (2018). Stigma experienced by families with members with intellectual disabilities in Kinshasa, Democratic Republic of the Congo. Intervention, 16(2), 119. https://doi.org/10.4103/INTV.INTV_13_18CrossRefGoogle Scholar
Ali, A., King, M., Strydom, A., & Hassiotis, A. (2016). Self-reported stigma and its association with socio-demographic factors and physical disability in people with intellectual disabilities: Results from a cross-sectional study in England. Social Psychiatry and Psychiatric Epidemiology, 51(3), 465–474. https://doi.org/10.1007/s00127-015-1133-zGoogle Scholar
Ali, A., Scior, K., Ratti, V., et al. (2013). Discrimination and other barriers to accessing health care: Perspectives of patients with mild and moderate intellectual disability and their carers. PLoS ONE, 8(8), e70855. https://doi.org/10.1371/journal.pone.0070855CrossRefGoogle ScholarPubMed
Ali, A., Strydom, A., Hassiotis, A., Williams, R., & Kin, M. (2008). A measure of perceived stigma in people with intellectual disability. British Journal of Psychiatry, 193(5), 410–415. https://doi.org/10.1192/bjp.bp.107.045823Google Scholar
Allport, G. W. (1954). The Nature of Prejudice. Addison-Wesley.Google Scholar
American Psychiatric Association. (2013). Diagnostic and Statistical Manual of Mental Disorders (DSM-5®). American Psychiatric Pub.Google Scholar
Anderson, S., & Bigby, C. (2017). Self‐advocacy as a means to positive identities for people with intellectual disability: “We just help them, be them really.” Journal of Applied Research in Intellectual Disabilities, 30(1), 109–120. https://doi.org/10.1111/jar.12223Google Scholar
Angermeyer, M. C., Holzinger, A., & Matschinger, H. (2010). Emotional reactions to people with mental illness. Epidemiologia e Psichiatria Sociale, 19(1), 26–32. https://doi.org/10.1017/S1121189_00001573CrossRefGoogle ScholarPubMed
Araten‐Bergman, T., & Werner, S. (2017). Social workers’ attributions towards individuals with dual diagnosis of intellectual disability and mental illness. Journal of Intellectual Disability Research, 61(2), 155–167. https://doi.org/10.1111/jir.12300Google Scholar
Blundell, R., Potts, H., Das, R., & Scior, K. (2016). The association between contact and intellectual disability literacy, causal attributions and stigma. Journal of Intellectual Disability Research, 60(3), 218–227. https://doi.org/10.1111/jir.12241Google Scholar
Brand, S., Felner, R., Shim, M., Seitsinger, A., & Dumas, T. (2003). Middle school improvement and reform: Development and validation of a school-level assessment of climate, cultural pluralism, and school safety. Journal of Educational Psychology, 95(3), 570. https://doi.org/10.1037/0022-0663.95.3.570Google Scholar
Buljevac, M., Milić Babić, M., & Leutar, Z. (2020). “You don’t have to tell me in person I’m not to your liking”: Experiences of discrimination of people with intellectual disabilities. International Journal of Disability, Development and Education, 69(3), 837–852. https://doi.org/10.1080/1034912X.2020.1736522Google Scholar
Caprara, G. V., Steca, P., Zelli, A., & Capanna, C. (2005). A new scale for measuring adults’ prosocialness. European Journal of Psychological Assessment, 21(2), 77–89. https://doi.org/10.1027/1015-5759.21.2.77Google Scholar
Cook, J. E., Purdie-Vaughns, V., Meyer, I. H., & Busch, J. T. (2014). Intervening within and across levels: A multilevel approach to stigma and public health. Social Science and Medicine, 103, 101–109. https://doi.org/10.1016/j.socscimed.2013.09.023CrossRefGoogle Scholar
Cooney, G., Jahoda, A., Gumley, A., & Knott, F. (2006). Young people with intellectual disabilities attending mainstream and segregated schooling: Perceived stigma, social comparison and future aspirations. Journal of Intellectual Disability Research, 50(6), 432–444.CrossRefGoogle ScholarPubMed
Corrigan, P., Markowitz, F. E., Watson, A., Rowan, D., & Kubiak, M. A. (2003). An attribution model of public discrimination towards persons with mental illness. Journal of Health and Social Behavior, 44(2), 162–179. https://doi.org/10.2307/1519806Google Scholar
Corrigan, P. W., & Watson, A. C. (2002). The paradox of self‐stigma and mental illness. Clinical Psychology: Science and Practice, 9(1), 35–53. https://doi.org/10.1093/clipsy.9.1.35Google Scholar
Corrigan, P. W., Watson, A. C., & Barr, L. (2006). The self-stigma of mental illness: Implications for self-esteem and self-efficacy. Journal of Social and Clinical Psychology, 25(8), 875–884. https://doi.org/10.1521/jscp.2006.25.8.875Google Scholar
Corrigan, P. W., Watson, A. C., Heyrman, M. L., et al. (2005). Structural stigma in state legislation. Psychiatric Services, 56(5), 557–563. https://doi.org/10.1176/appi.ps.56.5.557CrossRefGoogle ScholarPubMed
Duran, S., & Ergün, S. (2018). The stigma perceived by parents of intellectual disability children: An interpretative phenomenological analysis study. Anatolian Journal of Psychiatry, 19(4), 1. https://doi.org/10.5455/apd.282536Google Scholar
Festinger, L. (1954). A theory of social comparison processes. Human Relations, 7(2), 117–140. https://doi.org/10.1177/001872675400700202Google Scholar
Gilmore, L. A., Campbell, J., & Cuskelly, M. (2003). Developmental expectations, personality stereotypes, and attitudes towards inclusive education: Community and teacher views of Down syndrome. International Journal of Disability, Development, and Education, 50(1), 65–76. https://doi.org/10.1080/103491203200005340Google Scholar
Harrison, A. J., Bisson, J. B., & Laws, C. B. (2019). Impact of an inclusive postsecondary education program on implicit and explicit attitudes toward intellectual disability. Intellectual and Developmental Disabilities, 57(4), 323–336. https://doi.org/10/1352/1934-9556-57.4.323Google Scholar
Henry, D., Kes, C., Jopp, D., & Balcazar, F. (1996). The Community Living Attitudes Scale, Mental Retardation Form: Development and psychometric properties. Mental Retardation, 34(3), 149–158.Google Scholar
Holmes, E. P., Corrigan, P. W., Williams, P., Canar, J., & Kubiak, M. A. (1999). Changing attitudes about schizophrenia. Schizophrenia Bulletin, 25, 447–456.Google Scholar
Jahoda, A., & Markova, I. (2004). Coping with social stigma: People with intellectual disabilities moving from institutions and family home. Journal of Intellectual Disability Research, 48(8), 719–729. https://doi.org/10.1111/j.1365-2788.2003.00561.xGoogle Scholar
James, J. S. (2019). Beliefs about intellectual disability among employees at a state facility and undergraduate students: An exploratory analysis. Journal of Applied Research in Intellectual Disabilities, 32(1), 51–60. https://doi.org/10.1111/jar.12501Google Scholar
Jansen-van Vuuren, J., & Aldersey, H. M. (2020). Stigma, acceptance and belonging for people with IDD across cultures. Current Developmental Disorders Reports, 7(3), 163–172. https://doi.org/10.1007/s40474-020-00206-wGoogle Scholar
Kirschner, B., Goetzl, M., & Curtin, L. (2020). Mental health stigma among college students: Test of an interactive online intervention. Journal of American College Health, 1–8, [published online October 13, 2020]. https://doi.org/10.1080/07448481.2020.1826492Google Scholar
Larson, J. E., & Corrigan, P. (2008). The stigma of families with mental illness. Academic Psychiatry, 32(2), 87–91. https://doi.org/10.1176/appi.ap/32.2.87Google Scholar
Lindau, N., Amin, T., Zambon, A., & Scior, K. (2018). The effect of brief digital interventions on attitudes to intellectual disability: Results from a pilot study. Journal of Applied Research in Intellectual Disabilities, 31(1), 106–113. https://doi.org/10.1111/jar.12366CrossRefGoogle ScholarPubMed
Link, B. G., Cullen, F. T., Frank, J., & Wozniak, J. F. (1987). The social rejection of former mental patients: Understanding why labels matter. American Journal of Sociology, 92(6), 1461–1500.Google Scholar
Link, B. G., & Phelan, J. C. (1999). The labelling theory of mental disorder (II): The consequences of labelling. In Horwitz, A. & Scheid‐Cook, T. (Eds.), The Sociology of Mental Health and Illness (pp. 361–376). Oxford University Press.Google Scholar
Link, B. G., Phelan, J. C., Bresnahan, M., Stueve, A., & Pescosolido, B. A. (1999). Public conceptions of mental illness: Labels, causes, dangerousness, and social distance. American Journal of Public Health, 89(9), 1328–1333. https://doi.org/10.2105/AJPH.89.9.1328Google Scholar
Link, B. G., Struening, E. L., Rahav, M., Phelan, J. C., & Nuttbrock, L. (1997). On stigma and its consequences: Evidence from a longitudinal study of men with dual diagnoses of mental illness and substance abuse. Journal of Health and Social Behavior, 38(2), 177–190. https://doi.org/10.2307/2955424Google Scholar
Logeswaran, S., Hollett, M., Zala, S., Richardson, L., & Scior, K. (2019). How do people with intellectual disabilities construct their social identity? A review. Journal of Applied Research in Intellectual Disabilities, 32, 533–542. https://doi.org/10.1111/jar.12566Google Scholar
Maguire, R., Wilson, A., & Jahoda, A. (2019). Talking about learning disability: Promoting positive perceptions of people with intellectual disabilities in Scottish schools. International Journal of Developmental Disabilities, 65(4), 257–264. https://doi.org/10.1080/20473869.2018.1446497Google Scholar
Mak, W. W., & Cheung, R. Y. (2008). Affiliate stigma among caregivers of people with intellectual disability or mental illness. Journal of Applied Research in Intellectual Disabilities, 21(6), 532–545. https://doi.org/10.1111/j.1468-3148.2008.00426.xGoogle Scholar
Marriott, C., Parish, C., Griffiths, C., & Fish, R. (2020). Experiences of shame and intellectual disabilities: Two case studies. Journal of Intellectual Disabilities, 24(4), 489–502. https://doi.org/10.1177/1744629519844091Google Scholar
Mitter, N., Ali, A., & Scior, K. (2018). Stigma experienced by family members of people with intellectual and developmental disabilities: Multidimensional construct. BJPsych Open, 4(5), 332–338. https://doi.org/10.1192/bjo.2018.39Google Scholar
Molero, F., Recio, P., García-Ael, C., Fuster, M. J., & Sanjuán, P. (2013). Measuring dimensions of perceived discrimination in five stigmatized groups. Social Indicators Research, 114(3), 901–914. https://doi.org/10.1007/s11205-012-0179-5Google Scholar
Monteleone, R., & Forrester‐Jones, R. (2017). “Disability means, um, dysfunctioning people”: A qualitative analysis of the meaning and experience of disability among adults with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities, 30(2), 301–315. https://doi.org/10.1111/jar.12240Google Scholar
Morin, D., Rivard, M., Crocker, A. G., Boursier, C. P., & Caron, J. (2013). Public attitudes towards intellectual disability: A multidimensional perspective. Journal of Intellectual Disability Research, 57(3), 279–292. https://doi.org/10.1111/jir.12008Google Scholar
O’Byrne, C., & Muldoon, O. (2017). Stigma, self-perception and social comparisons in young people with an intellectual disability. Irish Educational Studies, 36(3), 307–322. https://doi.org/10.1080/03323315.2017.1327363CrossRefGoogle Scholar
Paterson, L., McKenzie, K., & Lindsay, B. (2012). Stigma, social comparison and self-esteem in adults with an intellectual disability. Journal of Applied Research in Intellectual Disabilities, 25(2), 166–176. https://doi.org/10.1111/j.1468-3148.2011.00651.xCrossRefGoogle ScholarPubMed
Pelleboer-Gunnink, H. A., Van Oorsouw, W. M., Van Weeghel, J., Embregts, P. J. (2017). Mainstream health professionals’ stigmatising attitudes towards people with intellectual disabilities: A systematic review. Journal of Intellectual Disability Research, 61(5), 411–434. https://doi.org/10.1111/jir.12353Google Scholar
Pelleboer-Gunnink, H. A., van Weeghel, J., & Embregts, P. J. (2021). Public stigmatisation of people with intellectual disabilities: A mixed-method population survey into stereotypes and their relationship with familiarity and discrimination. Disability and Rehabilitation, 43(4), 489–497. https://doi.org/10.1080/09638288.2019.1630678Google Scholar
Pettigrew, T. F., & Tropp, L. R. (2006) A meta-analytic test of intergroup contact theory. Journal of Personality and Social Psychology, 90(5), 751–783. https://doi.org/10.1037/0022-3514.90.5.751Google Scholar
Potvin, L. A., Barnett, B. M., Brown, H. K., & Cobigo, V. (2019). “I didn’t need people’s negative thoughts”: Women with intellectual and developmental disabilities reporting attitudes toward their pregnancy. Canadian Journal of Nursing Research, 51(3), 154–167. https://doi.org/10.1177/0844562118819924Google Scholar
Pryor, J. B., & Reeder, G. D. (2011). HIV-related stigma. In Hall, J. C., Hall, B. J., & Cockerell, C. J. (Eds.), HIV/AIDS in the Post-HAART Era: Manifestations, Treatment, and Epidemiology (pp. 790–806). PMPH-USA.Google Scholar
Rasdale, A. R., Warman, D. M., & Phalen, P. L. (2018). An examination of perceptions of individuals with an intellectual disability, with and without co‐morbid schizophrenia: Effects of labels on stigma. Journal of Intellectual Disability Research, 62(6), 544–556. https://doi.org/10.1111/jir.12494Google Scholar
Recio, P., Molero, F., García-Ael, C., & Pérez-Garín, D. (2020). Perceived discrimination and self-esteem among family caregivers of children with autism spectrum disorders (ASD) and children with intellectual disabilities (ID) in Spain: The mediational role of affiliate stigma and social support. Research in Developmental Disabilities, 105, [Epub July 14, 2020]. https://doi.org/10.1016/j.ridd.2020.103737Google Scholar
Renick, M. J., & Harter, S. (1988). Manual for the Self-Perception Profile for Learning Disabled Students. Denver: University of Denver.Google Scholar
Rickard, W., & Donkin, A. (2018). A fair, supportive society: Summary report. www.instituteofhealthequity.org/resources-reports/a-fair-supportive-society-summary-reportGoogle Scholar
Sartorius, N., & Janca, A. (1996). Psychiatric assessment instruments developed by the World Health Organisation. Social Psychiatry and Psychiatric Epidemiology, 31, 55–69.Google Scholar
Scior, K. (2016). Toward understanding intellectual disability stigma: Introduction. In Scior, K. & Werner, S. (Eds.), Intellectual Disability & Stigma: Stepping Out from the Margins (pp. 3–13). Palgrave Macmillan.CrossRefGoogle Scholar
Scior, K., Coonolly, T., & William, J. (2013). The effects of symptom recognition and diagnostic labels of public beliefs, emotional reactions, and stigmas associated with intellectual disability. American Journal of Intellectual and Developmental Disabilities, 118(3), 211–223. https://doi.org/10.1352/1944-7558-118.3.211Google Scholar
Scior, K., & Furnham, A. (2011). Development and validation of the intellectual disability literacy scale for assessment of knowledge, beliefs and attitudes to intellectual disability. Research in Developmental Disabilities, 32, 1530–1541.Google Scholar
Scior, K., & Furnham, A. (2016). Causal beliefs about intellectual disability and schizophrenia and their relationship with awareness of the condition and social distance. Psychiatry Research, 243, 100–108. https://doi.org/10.1016/j.psychres.2016.06.019CrossRefGoogle ScholarPubMed
Siperstein, G. N., Albert, A. B., Jacobs, H. E., Osborne, K. J., & Stokes, J. E. (2018). A schoolwide approach to promoting student bystander behavior in response to the use of the word “retard.” Research in Developmental Disabilities, 80, 142–152. https://doi.org/10.1016/j.ridd.2018.06016Google Scholar
Siperstein, G. N., Pociask, S. E., & Collins, M. A. (2010). Sticks, stones, and stigma: A study of students’ use of the derogatory term “retard.” Intellectual and Developmental Disabilities, 48(2), 126–134. https://doi.org/10.1352/1934-9556-48.2.126Google Scholar
Song, J., Mailick, M. R., & Greenberg, J. S. (2018). Health of parents of individuals with developmental disorders or mental health problems: Impacts of stigma. Social Science & Medicine, 217, 152–158. https://doi.org/10.1016/j.socscimed.2018.09.044CrossRefGoogle ScholarPubMed
Spassiani, N., Abou Chacra, M. S., & Lunsky, Y. (2017). “Why are you here? Can’t you cope at home?” The psychiatric crisis of people with intellectual disabilities and the community’s response. Journal of Mental Health Research in Intellectual Disabilities, 10(2), 74–92. https://doi.org/10.1080/19315864.2016.1278290Google Scholar
Stephan, W. G., & Stephan, C. W. (1985). Intergroup anxiety. Journal of Social Issues, 41, 157–175.Google Scholar
Struening, E. L., Perlick, D. A., Link, B. G., et al. (2001). The extent to which caregivers believe most people devalue consumers and their families. Psychiatric Services, 52(12), 1633–1638. https://doi.org/10.1176/appi.ps.52.12.1633Google Scholar
Sullivan, A., & Mendonca, R. (2017). Impact of a fieldwork experience on attitudes toward people with intellectual disabilities. American Journal of Occupational Therapy, 71(6), 7106230010p1–7106230010p8. https://doi.org/10.5014/ajot.2017.025460Google Scholar
Tajfel, H., & Turner, J. C. (1979). An integrative theory of intergroup conflict. In Austin, W. G. & Worchel, S. (Eds.), The Social Psychology of Intergroup Relations (pp. 33–47). Brooks Cole.Google Scholar
Tilahun, D., Hanlon, C., Fekadu, A., et al. (2016). Stigma, explanatory models and unmet needs of caregivers of children with developmental disorders in a low-income African country: A cross-sectional facility-based survey. BMC Health Services Research, 16(1), 152. https://doi.org/10.1186/s12913-016-13Google Scholar
Turner, E. A. (2012). The parental attitudes toward psychological services inventory: Adaptation and development of an attitude scale. Community Mental Health Journal, 48(4), 436–449. https://doi.org/10.1007/s10597-011-9432-7Google Scholar
UN General Assembly, Convention on the Rights of Persons with Disabilities : resolution / adopted by the General Assembly, January 24, 2007, A/RES/61/106, available at: www.refworld.org/docid/45f973632.html [accessed December 15, 2020]Google Scholar
Voermans, M. A., Taminiau, E. F., Giesbers, S. A., & Embregts, P. J. (2021). The value of competitive employment: In‐depth accounts of people with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities, 34, 239–249. https://doi.org/10.1111/jar.12802Google Scholar
Weiner, B. (1985). An attributional theory of achievement motivation and emotion. Psychological Review, 92(4), 548.Google Scholar
Werner, S. (2015). Stigma in the area of intellectual disabilities: Examining a conceptual model of public stigma. American Journal on Intellectual and Developmental Disabilities, 120(5), 460–475. https://doi.org/10.1352/1944-7558-120.5.460Google Scholar
Werner, S., & Araten-Bergman, T. (2017). Social workers’ stigmatic perceptions of individuals with disabilities: A focus on three disabilities. Journal of Mental Health Research in Intellectual Disabilities, 10(2), 93–107. https://doi.org/10.1080/19315864.2017.1284288Google Scholar
Werner, S., & Scior, K. (2016). Interventions aimed at tackling intellectual disability stigma: What works and what still needs to be done. In Scior, K. & Werner, S. (Eds.), Intellectual Disability & Stigma: Stepping Out from the Margins (pp. 129–147). Palgrave Macmillan.Google Scholar
Werner, S., Stern, I., Roth, D., & Tenenbaum, A. (2019). Help-seeking by parental caregivers of individuals with intellectual disabilities and dual diagnosis. Administration and Policy in Mental Health and Mental Health Services Research, 46(3), 321–333. https://doi.org/10.1007/s10488-018-00915-wGoogle Scholar
Whatley, C. D. (1959). Social attitudes toward discharged mental patients. Social Problems, 6(4), 313–320.Google Scholar
Williams, D. R., Yu, Y., Jackson, J. S., & Anderson, N. B. (1997). Racial differences in physical and mental health: Socio-economic status, stress and discrimination. Journal of Health Psychology, 2, 335–351.Google Scholar
Wołowicz‐Ruszkowska, A., & McConnell, D. (2017). The experience of adult children of mothers with intellectual disability: A qualitative retrospective study from Poland. Journal of Applied Research in Intellectual Disabilities, 30(3), 482–491. https://doi.org/10.1111/jar.12322Google Scholar
Wright, S. C., Aron, A., McLaughlin-Volpe, T., & Ropp, S. A. (1997). The extended contact effect: Knowledge of cross-group friendships and prejudice. Journal of Personality and Social Psychology, 73(1), 73–90.Google Scholar

Save book to Kindle

To save this book to your Kindle, first ensure [email protected] is added to your Approved Personal Document E-mail List under your Personal Document Settings on the Manage Your Content and Devices page of your Amazon account. Then enter the ‘name’ part of your Kindle email address below. Find out more about saving to your Kindle.

Note you can select to save to either the @free.kindle.com or @kindle.com variations. ‘@free.kindle.com’ emails are free but can only be saved to your device when it is connected to wi-fi. ‘@kindle.com’ emails can be delivered even when you are not connected to wi-fi, but note that service fees apply.

Find out more about the Kindle Personal Document Service.

Available formats
×

Save book to Dropbox

To save content items to your account, please confirm that you agree to abide by our usage policies. If this is the first time you use this feature, you will be asked to authorise Cambridge Core to connect with your account. Find out more about saving content to Dropbox.

Available formats
×

Save book to Google Drive

To save content items to your account, please confirm that you agree to abide by our usage policies. If this is the first time you use this feature, you will be asked to authorise Cambridge Core to connect with your account. Find out more about saving content to Google Drive.

Available formats
×