Ableism, racism, and the quality of life of Black, Indigenous, people of colour with intellectual and developmental disabilities

Abstract

Background: Research indicates Black, Indigenous, people of colour (BIPOC) with intellectual and developmental disabilities face disparities in quality of life outcomes. This study's aim was to examine how ableism and racism impacted the quality of life of BIPOC with intellectual and developmental disabilities.Methods: Using a multilevel linear regression, we analysed secondary quality of life outcome data from Personal Outcome Measures ® interviews with 1393 BIPOC with intellectual and developmental disabilities and implicit ableism and racism data from the 128 regions of the United States in which they lived (discrimination data came from 7.4 million people).Results: When BIPOC with intellectual and developmental disabilities lived in regions of the United States which were more ableist and racist, they had a lower quality of life, regardless of their demographics. Conclusion:Ableism and racism are a direct threat to BIPOC with intellectual and developmental disabilities' health, wellbeing, and overall quality of life.ableism; Black, Indigenous, people of colour; discrimination; people with intellectual and developmental disabilities; quality of life; racism | INTRODUCTIONWhen it comes to disability, quality of life measures were originally utilised in a way that reinforced ableism, rather than examined its impactsthey were originally developed for the purpose of examining the 'burden' of disability (Albrecht & Devlieger, 1999;Buntinx & Schalock, 2010;Cieza & Stucki, 2005;Schalock et al., 2002). However, many quality of life measures used with people with disabilities have since been reconceptualized to be more holistic, emphasising person-centred outcomes (Schalock, 2004;Schalock et al., 2002;Verdugo et al., 2005). Quality of life is considered to contain a wide range of domains, including: emotional well-being; interpersonal relations; material well-being; personal development; physical well-being; self-determination; social inclusion; and, rights (Schalock, 2004;Schalock et al., 2002Schalock et al., , 2010. Quality of life measures and research also recognise that quality of life is multidimensionalthat individuals, communities, systems, and society all impact quality of life (Claes

The study of ableism in population health: a critical review

“…Eleven additional articles focused on structural ableism, either alone (7.3%; n = 3) or in addition to other levels (19.5%; n = 8). Six of these articles were interested in attitudes, norms, or discriminatory experiences, but were classified as having structural ableism measures or themes in this review because of the explicit conceptualizations employed by authors ( 51 , 57 , 78 – 81 ). For example, Whittle and colleagues used a qualitative approach to explore how changes in welfare benefits policies have impacted ‘the lived experience of disability and stigma’ for individuals living with type 2 diabetes or HIV ( 79 ).…”

The impact of social-environmental factors on IQ in syndromic intellectual developmental disabilities

“…Second, despite the high degree of stigma and discrimination experienced by individuals with IDDs and their family members [122], especially those who also hold marginalized racial and ethnic identifies [118,119,[123][124][125][126][127], their impact on IQ and cognitive outcomes is not well understood in syndromic IDDs. The lack of research on these associations may be related to limited availability of validated self-or proxy-report measures of discrimination in individuals with IDDs, as self-report measures of discrimination are limited to individuals with mild to moderate IDD [128].…”

“…Despite limited availability of suitable self-report measures to assess discrimination, studies assessing other outcomes linked to cognitive development (e.g., health and quality of life) in people with IDDs from marginalized racial and ethnic backgrounds may help clarify the impact of discrimination. For example, non-White individuals with IDDs or other neurodevelopmental disabilities (e.g., autism) experience a lower quality of life on average than their White peers, in part due to a disproportionately limited number of decision-making opportunities [ 123 , 124 ]. Similarly, adults with IDDs who are from marginalized racial and ethnic backgrounds experience poorer health outcomes and/or face a greater number of barriers to accessing care compared to both White adults with IDDs as well as adults who are from marginalized racial and ethnic backgrounds without IDDs [ 127 , 129 ].…”