Katrina Scior and Shirli Werner’s edited volume Intellectual Disability and Stigma: Stepping Out From the Margins argues persuasively that researchers need to reframe the academic discussion away from attitudes and toward stigma, as the latter concept makes visible issues of power and inequality. About 2% of the worldwide population has an intellectual disability and they remain a highly stigmatized group. The book advances stigma research in three ways. Part one defines stigma and reviews ways to measure it. Part two explores the consequences of stigma. Part three assesses interventions used to tackle stigma. All chapters end with Key Learning Points and an Accessible Summary.
After Scior’s first chapter defines stigma and explains its significance, Werner’s chapter addresses methodological concerns. Most scales have been developed in western countries, leaving underexplored cross-cultural dimensions of stigma. Additionally, most scales ask respondents to self-report their attitudes, raising questions about social desirability bias. Werner reviews new scales that respond to these problems, including the Attitudes Toward Intellectual Disability Questionnaire (ATTID) and the ID Stigma Scale, both of which take a multidimensional approach measuring cognitive, affective, and behavioral dimensions.
Part two begins with Ditchman et al.’s helpful overview on the consequences of stigma. In comparison to non-disabled people, people with intellectual disabilities are more likely to experience violence and harassment, unemployment, poverty, poorer health outcomes, and may have little to no access to education.
In Roth, Barak, and Peretz’s chapter, self-advocates report experiences with negative attitudes. Respondents described how they primarily try to ignore discriminatory treatment, in large part, because people taught them to do so. The authors suggest that this refusal to confront stigma may help reinforce self-stigma. Renwick’s chapter on media representation finds that people with intellectual and developmental disabilities are under-represented and, when they do appear, tend to reinforce negative stereotypes and ignore structural inequalities.
Sigurjónsdóttir and Rice’s chapter explores the role of stigma in the loss of parental rights of people with intellectual disabilities in Iceland. They chart briefly the history of stigma and sterilization to explain why the diagnosis of intellectual disability continues to signal a person’s unfitness to parent.
Sheehan and Ali describe the ‘stepwise’ model of self-stigma in which a person goes from awareness to a negative stereotype, to uncritical acceptance, and finally to its negative impact on their life. They call for more research to discern how this model applies to people with intellectual disabilities.
In this section’s final chapter, Sherry and Neller analyze hate crimes against people with intellectual disabilities in the United Kingdom and the United States between 2011 and 2015. Although hate crimes involve brutality, torture, and even death, far too few crimes are reported and even fewer receive recognition as hate crimes.
Part three begins with an overview by Werner and Scior on interventions to tackle intellectual disability stigma. Building on mental health research, they call for a multilevel model of combating stigma at intrapersonal, familial, interpersonal, and structural levels. For Werner and Scior, ‘more research is needed to decipher which specific components of interventions are effective drivers for change, which make best use of limited resources and which are most capable of reaching large audiences, while being effective’ (140).
Carter, Biggs, and Blustein review interventions targeting stigma in elementary and middle school. Effective interventions enable students to develop shared experiences and valued roles, provide relevant information about intellectual disability, and offer balanced support from professionals. They argue that new research should answer bigger questions, including: the long-term effects of peer interventions; the effects of school-wide initiatives; and whether intervention strategies developed in western countries are effective elsewhere.
Anderson and Bigby explore how self-advocates adopt ‘subtle radicalism’ wherein the purpose of self-advocacy turns away from influencing policy-makers and instead focuses on creating ‘self-authored’ spaces. Self-advocacy enables people to adopt socially valued roles and the confidence to speak up for oneself. Even though self-advocacy groups empower people at the interpersonal level, Anderson and Bigby warn that state spending cuts jeopardize their efficacy.
McConkey, Kahonde, and McKenzie examine the role played by families in tackling stigma in developing countries. The authors reject calls to develop cross-national measures and instead argue that researchers should develop interventions tailored to each cultural context. Yet they argue that the family is significant cross-culturally. They draw upon their research in South Africa, and also integrate their analysis with research from Ghana, Tanzania, Namibia, and Pakistan, to illustrate how families can both challenge and reinforce stigma.
Fiala-Butora and Stein argue that although the law can play a positive role in advancing the rights of people with intellectual disabilities, it can also reinforce stigma, particularly in the example of guardianship. Once guardianship is in place, Fiala-Butora and Stein draw on research showing that it undermines the agency of individuals. They look toward Article 12 of the Convention on the Rights of Persons with Disability as a positive mechanism on the law.
In their review of research, Crabtree, Mandy, and Mustard find that people with intellectual disabilities use a variety of coping mechanisms to offset stigma, including: comparing themselves to people less able or whose behavior is more disruptive; emphasizing qualities about themselves that show their strengths; and rejecting stigma through a shared group identity. They call for more research in the area of peer support, as this remains understudied.
In the Epilogue, Scior and Werner argue that ‘our agenda in moving forward must be to develop effective strategies to tear down community barriers to these goals while not losing sight of underlying impairments and the associated need for support’ (222–223). They identify important avenues forward: determining which interventions are most effective; building partnerships amongst different stakeholders, especially with people with intellectual disabilities; and creating academic collaborations across world regions and for more support from those in high-income countries. If you share an interest in these goals, then you should read Intellectual Disability and Stigma.
Women's and Gender Studies, Vanderbilt University, Nashville, TN, USA
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