Beautiful Plants For Your Interior
Rupa Sheth Valdez, Ph.D., and Bonnielin K. Swenor, Ph.D., M.P.H.
A recent report from a working group of the National Institutes of Health (NIH) Advisory Committee on Diversity (which one of us, B.K.S., co-chaired) highlights the need for more research on the health inequities faced by people with disabilities.1 A key step toward studying and addressing these inequities is acknowledging the role of structural ableism as a contributor to poor health outcomes; we must then find ways to measure and dismantle it. Dismantling structural ableism needs to be prioritized, since more than 27% of U.S. adults have disabilities, which may be visible or invisible, congenital or acquired, static or dynamic.
The distinction between ableism and structural ableism echoes that between racism and structural racism: whereas ableism entails bias against and devaluing of people with disabilities, structural ableism entails “a complex system of hierarchical and discriminatory processes, policies, and institutions that privilege and prefer able-bodied people, fail to represent or meaningfully include disabled persons’ voices, and are grounded in a network of ableist beliefs and practices that maintain and reproduce unequal outcomes for disabled people and benefit able-bodied people.”2 Ableist beliefs are rooted in perspectives that characterize disability as “abnormal” or as an individual problem requiring treatment or cure — as opposed to perspectives that acknowledge disability as a normal part of human diversity and recognize that the experience of having a disability is shaped by built, social, political, and economic environments. In the United States, for example, the experience of disability is shaped by a political economy rooted in capitalism, a system that treats the disabled body as disposable and prioritizes the right to wealth over the right to inclusion.
Structural ableism and its devastating consequences are often ignored, both within the public discourse and in the health care and research communities. People with disabilities face substantial inequities in numerous social determinants of health, ranging from education and employment, to housing and transportation, to access to broadband and other technologies. They also experience inequities in health care quality and access stemming from physical, attitudinal, and communication barriers; inadequate professional training in legal obligations and the needs of people with disabilities; and inadequate knowledge regarding, and reimbursement for, accommodations. Although telehealth may address some of these concerns, its inadequate design and implementation may further perpetuate health inequities.3 Inequities are also exacerbated by global crises such as the Covid-19 pandemic and climate change. All these factors interact in ways that compound harms for people with disabilities, including disproportionately high rates of depression, anxiety, diabetes, obesity, and heart disease.4
We believe it is therefore imperative for the NIH to formally recognize the disability community as a population affected by health disparities (as the National Council on Disability and others have recommended) and for agencies such as the Centers for Disease Control and Prevention to follow suit (e.g., by including questions about disability in the Social Vulnerability Index). Such recognition could catalyze essential research to further elucidate structural ableism, the pathways through which it acts, and the changes required to mitigate its effects.
Fully understanding health inequities requires clarification of the ways in which structural ableism interacts with other structural forms of oppression. For example, there is a higher-than-average prevalence of disability in many marginalized racial and ethnic groups,3 and the health inequities they face are simultaneously shaped by structural ableism and structural racism. People in these intersecting groups may simultaneously experience the effects of redlining and inaccessible health care services (e.g., lack of interpreters, including those who use signed languages other than American Sign Language) and thus face poor health outcomes shaped by both. People living in rural areas, too, are more likely to have disabilities,3 and the disparities they face are compounded by those arising from their location (e.g., limited access to broadband and transportation). The ways in which structural ableism interacts with other structural forms of oppression, such as sexism, sexualism, and classism, also require elucidation if we are to improve health equity for everyone.
As first steps toward research and solutions, we need to create, validate, and operationalize multidimensional measures of structural ableism. Since some similar forces are at work in structural ableism and structural racism, some domains reflected in measures of the former should parallel those used to assess the latter: housing, education, criminal justice, employment, health care, political participation, immigration, socioeconomic status, and perceived oppression by social institutions.5 But other domains will also have to be incorporated, including accessibility of the built environment, technology, and communication.
Measurement approaches can draw on those used for structural racism, but we also need new approaches specific to experiences of disability. Some measures of structural racism rely on people’s self-reports of their experiences either overall or in specific domains.5 For example, questions such as “Have you ever been treated unfairly (1) on the job (hiring, promotion, and firing); (2) in housing (renting, buying, and mortgage); and (3) by the police (stopped, searched, and threatened) because of your race?” could be adapted for measuring structural ableism. In the housing domain, measures such as the odds of being denied a mortgage may be relevant to both structural racism and structural ableism. By contrast, before a measure such as redlining can be translated for use in assessing structural ableism, we need additional analysis of its relationship to disability.
New measures are also needed, such as the percentage of people with disabilities who are institutionalized in a given region, which itself is a product of yet other measurable forms of structural ableism (e.g., the amount of Medicaid funding allocated to home- and community-based services, as well as the rate of violations of the Olmstead decision, which codifies the rights of people with disabilities to community integration and community-based services). Finally, some domains of structural ableism, including accessibility of the built environment, require the creation of measures such as the percentage of crosswalks with curb cuts and intersections with audible crosswalk signals in a geographic area. For these measures to be viable, many existing local, state, and federal data-collection efforts require expansion to explicitly capture disability status.
Once measures have been developed and validated, the mechanisms and pathways that link structural ableism to health inequities will need to be clarified. For example, inequities in overall health and well-being, chronic health conditions, and substance use disorders may be attributable in part to disparities in social isolation, which may, in turn, be partially explained by the inaccessibility of the built environment, technology, and communication services. Mapping these pathways, their interrelationships, and their relative contributions to health inequities is essential to developing effective interventions and advocacy efforts that address the myriad ways in which structural ableism shapes health outcomes. Identifying mechanisms and pathways will also help dispel the myth that health inequities affecting people with disabilities are rooted primarily in their underlying health conditions.4
We believe methodologic expansiveness and inclusivity are needed and that transdisciplinary thinking should be the foundation for developing and testing hypotheses about structural ableism. Qualitative approaches are essential to understanding the multidimensionality of these measures, developing community-driven hypotheses about structural ableism’s impact on health outcomes, and including intersectional experiences. Given the multiple interacting and interdependent factors contributing to structural ableism, quantitative models capable of addressing such complexity (agent-based modeling, structural equation modeling, system dynamic modeling, and network analysis) should be applied to clarify its manifestations and effects. Most important, researchers, advocates, and policymakers will have to partner with the wide range of people in the disability community to ensure that efforts are inclusive of the diversity of disability experiences. True partnership requires eliminating barriers to participation by people with disabilities in efforts related to science, technology, engineering, and math; it also means promoting the inclusion of researchers and clinicians with disabilities. This approach honors a long-time motto of the disability community: “Nothing about us without us.”
Advancing research and action on structural ableism is critical for achieving equity in health and health care. We believe the steps outlined above represent the start of a pragmatic approach to rooting out the devastating health inequities affecting disabled people.
Disclosure forms provided by the authors are available at NEJM.org.
This article was published on May 13, 2023, at NEJM.org.
Author Affiliations
From the Departments of Public Health Sciences and Engineering Systems and Environment, University of Virginia, and the Blue Trunk Foundation — both in Charlottesville, VA (R.S.V.); and the Disability Health Research Center, the School of Nursing, and the Department of Epidemiology, Bloomberg School of Public Health, Johns Hopkins University, Baltimore (B.K.S.).
Supplementary Material
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