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date: 28 July 2021

Where Is Disability in Global Public Health?free

Where Is Disability in Global Public Health?free

  • Gloria KrahnGloria KrahnOregon State University

Summary

Accounting for about 15% of the world’s population, persons with disabilities constitute a critical population. Despite a substantial knowledge base in disability and public health, persons with disabilities have been remarkably invisible within general global public health. Public health’s view of disability is shifting from regarding disability only as an outcome to prevent, to using disability as a demographic characteristic that identifies a population experiencing a range of inequities. Alternative models of disability reflect how disability has been viewed over time. These models vary in their underlying values and assumptions, whether the locus of disability is the individual or the environment or their interaction, who designates “disability,” and the focus of intervention outcomes.

The United Nations flagship report on Disability and Sustainable Development Goals, 2018 documents that, as a group, the lives of persons with disabilities are marked by large disparities in Sustainable Development Goal indicators. These include increased likelihood of experiencing poverty, hunger, poor health, and unemployment, and greater likelihood of encountering barriers to education and literacy, clean water and sanitation, energy, and information technology. Overall, persons with disabilities experience greater inequalities, and this is particularly experienced by women and girls with disabilities. The COVID-19 pandemic and other disasters have highlighted the gaps in equality and consequent vulnerability of this population.

Global disability data have improved dramatically during the decade from 2010 to 2020 with the advent of standardized disability question sets (Washington Group) and model surveys (Model Disability Survey). New studies from the Global South and North identify areas and strategies for interventions that can effectively advance the Sustainable Development Goals.

This call-to-action outlines strategies for increasing visibility and improving wellbeing of persons with disabilities, particularly in the Global South. Increased visibility of the disability population within the global public health community can be achieved through active engagement of persons with disabilities. Improved collection of disability data and routine analysis by disability status can provide information vital to planning and policies. A twin-track approach can provide direction for interventions—inclusion in mainstream programs where possible, use of disability-specific and rehabilitation approaches where necessary. The article ends by outlining ways that multiple roles can increase the inclusion of persons with disabilities in global public health.

Subjects

  • Global Health

Persons With Disabilities—A Critical Population for Global Public Health

Approximately one billion people, or about 15% of the world’s population, were estimated to be living with disability in 2011 (World Health Organization & World Bank, 2011), with the great majority living in low- and middle-income (LMIC) countries—about the same number as the entire population of Europe and North America combined (Worldometers, n.d.). This percentage may be increasing as demographic shifts in the global population result in a greater proportion of older people, a group more likely to experience disabilities. Although there is a well-established scholarship on disability and global public health, the inequities experienced by persons with disabilities remain relatively invisible in the larger global public health community (Berghs et al., 2016; Groce, 2018; Mitra, 2018a). Persons with disabilities are at risk of being left behind in global health and development agendas (Kuper & Heydt, 2019). Promising efforts are evident since about 2010 in the LMICs. This article is a call to action for all of global public health to substantially increase awareness of persons with disabilities and take actions to increase their wellbeing.

Global public health is not a single entity, but comprised of an assortment of intergovernmental entities, nongovernmental relief and faith-based organizations, international collectives, and regional networks. By definition, global public health brings scientifically validated approaches, technologies, and systems to address the most pressing health needs that transcend national boundaries (Gagnon & Labonte, 2013; Primarolo et al., 2009) to improve health and achieve equity for all people (Fried et al., 2010; Koplan et al., 2009). Its major topics include resource scarcity, pandemics, and natural and man-made disasters; its major challenges involve coordinating complex transactions across nations, systems, and cultures (Beaglehole & Bonita, 2010).

Traditionally, public health focused almost exclusively on preventing disabilities. That is, public health interventions were efforts to prevent disability as an outcome. But what responsibility does public health have for persons who live with existing disabilities? This distinction represents a fundamental shift in thinking—from considering disability as an outcome, to using disability as a demographic characteristic that describes a large part of the global population, and then explicitly including this group in all public health planning, policies, and data. Demographic characteristics of poverty, gender, or living in rural areas are routinely considered, but does generic public health address the inequities associated with disability status? Until relatively recently, global public health has stayed remarkably silent on this question. An Inclusion International (2020) study reported that 99% of work funded through Official Development Assistance failed to include persons with intellectual disabilities.

Reviewing articles of the Oxford Research Encyclopedia of Global Public Health further illustrates this invisibility. Among the 39 articles published from the Encyclopedia’s inception to April 2020, only 13 made any mention of “disability” or “disabilities” in the text, and these typically were one-word mentions. Of these, only three cited persons with disability as the target population for public health interventions. These were a program on childcare access for children with disabilities (Szwarcwald et al., 2019), a study of nondiscriminatory regional integration to promote individual potential (Buss & Tobar, 2018), and inclusion of youth with disabilities in sexual and reproductive health actions (Prata & Weidhert, 2020). Elsewhere, the term “disability” was used to refer to an outcome of physical violence, a characteristic of migrants or refugees (Ahonen, 2019; Bodeker & Kariippanon, 2020; de Souza Minayo & Franco, 2018; Humphris & Bradby, 2017); a topic area for a nongovernmental organization in Bangladesh (Perry & Chowdhury, 2020); Disability-Adjusted Life Years (DALYs) (Almeida, 2020; Khan et al., 2018); and disability benefits as a form of public support (Ahonen et al., 2018). Two articles used disability as a demographic characteristic: as a risk factor for depression (Lindert, 2018), and as a reason for no longer being considered healthy enough to work (Mendes, 2019). A similar review of documents posted by the International Association of Public Health Institutes indicated even less reference to disability, and exclusively as an outcome to prevent.

In contrast, literature from the disability and health field has documented disparities in environmental barriers (Lien et al., 2014); less likelihood of inclusion in health promotion programs (Berghs et al., 2016); challenges in accessing rehabilitation services, especially in LMICs (Bentley, J.A et al., 2016; World Health Organization & World Bank, 2011); disparities in health care access generally and preventive health services specifically (e.g., Krahn et al., 2015); and much higher rates of noncommunicable diseases (Reichard et al., 2011; WHO, 2018b). The end result is that persons with disabilities self-report poor health at four times the rate of persons without disabilities (e.g., United Nations [UN], 2019b).

Given this historic lack of attention to the needs of persons with disability in global public health, the purpose of the present article is to present a contemporary view of disability within global public health and identify opportunities for action. This article is intended primarily for readers unfamiliar with the field of disabilities and health. It begins with a description of overall considerations, and a review of different models for viewing disability. Next, it traces the United Nations’ (UN) approach to disability over time, and reviews findings from a 2018 UN flagship report. It describes the inequities revealed during the pandemic and other disasters, and highlights concerted efforts to include disability in the Global South. The article concludes with actions for how global public health can increase visibility and inclusion of persons with disabilities.

Disability and Public Health

Understanding disability in a global public health context requires an understanding of key contextual issues.

Cultural Differences

The meaning and designation of disability varies widely across countries, cultures, and belief systems (e.g., Ginsburg & Rapp, 2013). For example, the characteristics diagnosed as autism in the United States were regarded for the same child as “unusual attributes” in Morocco (Haldane & Crawford, 2010). Language around disability can stigmatize or normalize disability as diversity (Iles & Lou, 2019). Cultural understanding of disability impacts community attitudes and behaviors as well as the self-perception of persons experiencing disability. An exploration of disability perception among community groups in rural Kenya reflected multiple and overlapping explanations for the cause of disability (e.g., curse stemming from human transgressions, supernatural forces, biomedical factors; Bunning et al., 2017). Studies in south, east, and west African countries have led some scholars to propose an African understanding of disability that is grounded in a collectively developed understanding of “belonging” and “group solidarity” (Berghs, 2017).

Multiple Meanings of Disability

The term “disability” has multiple meanings, making the task of identifying and measuring disability challenging (Altman & Bernstein, 2008; Mont, 2007). These different meanings are reflected in different models of disability. This article uses the framework of the International Classification of Functioning, Disability and Health (WHO, 2001), where disability refers to limitations experienced by persons with physical, cognitive, sensory, or emotional conditions that, within their environmental contexts, limit their functioning, activities, or participation.

Importance of Environment

The experience of disability varies greatly by context. Exposure to poverty, physical inaccessibility of environments, limited access to health care and other services, and social stigma—all increase the burden on persons with limitations (e.g., Barnes, 2020). For example, a girl with limb loss growing up in poverty in India with few opportunities for education will have a very different disability experience from a well-educated man with limb loss in Sweden who has access to employment and technology.

Families and Disability

Families and close social supporters are critical to the wellbeing of all persons and play vital roles for many persons with disabilities. Much of the disability language in legislation and literature refers to the person with disabilities; yet, family members are vital as advocates, supports, and sometimes care providers, and their lives are also affected by disabilities.

Heterogeneity Among Persons With Disabilities

Persons with disabilities vary widely in terms of the nature of their impairments, age at onset, etiology of underlying conditions, and contextual experience of disability. They may experience sensory loss (e.g., vision, hearing), mobility limitations (e.g., physical paralysis or dysfunction), cognitive limitations (e.g., intellectual disabilities, brain injury), psychosocial challenges (e.g., affect, thought disorder), communication limitations (e.g., processing, speaking), and combinations of limitations. For some, the disability experience begins at birth, related to conditions like cerebral palsy or Down syndrome. For others, onset occurs in childhood or early adulthood because of disease (e.g., polio, encephalitis) or injury (e.g., spinal cord injury, limb loss); and for still others, the disability experience has later onset related to age when a disorder is manifest (e.g., multiple sclerosis, Huntington’s chorea) or results from chronic conditions (e.g., post-stroke sequelae, diabetes).

Human Rights and Disability

Human rights are the universal and inalienable rights that are inherent to being human (UN, n.d.). Since its inception in 1945, the United Nations (UN) has held universal human rights as its cornerstone, and the Universal Declaration of Human Rights in 1948 explicitly included persons with disability. The 2006 UN Convention on the Rights of Persons With Disabilities elaborates on these human rights and codifies processes for their implementation at the country level. Similarly, global public health is grounded in the values of human rights, health, and wellbeing of all (Benatar et al., 2010). While some writers regard human rights as a distinct model of disability (e.g., Berghs et al., 2016) or as a component of a social model (e.g., Barnes, 2020), this article takes the view that human rights are so fundamental that a human rights approach can and should be held conjointly with all models of disability.

Models of Disability

Ever present in human existence, disability is a natural part of the human condition. People implicitly hold views of disability that are typically acquired through personal experience and cultural interpretations. These views serve as powerful drivers of public health actions. The assumptions and implications of six of these models are presented here (for more detailed descriptions, see e.g., Drum, 2009; Iezzoni & Freedman, 2008; Mitra, 2018a; Retief & Letšosa, 2018). Multiple models may be held simultaneously. The value in identifying these models is to recognize their different assumptions and implications, particularly when they come into conflict.

Charity Model of Disability

The underlying view of a charity model of disability is that persons with disabilities are victims of circumstances that led to their impairment and are victims of their own impairments. Basic tenets of this view are that persons with disabilities are to be pitied, may be likened to dependent children, and are to be aided and cared for through the charity of others (Retief & Letšosa, 2018). Implicit in the charity model is that assistance might be withdrawn if persons are not regarded as worthy of assistance (e.g., seen as responsible for causing their own fate), or if economic resources become limited. Movement from a charity model to other models of disability is particularly evident in the early 21st century in the Global South (Amponsah-Bediako, 2013; Chavan & Rozatkar, 2014; Tsai & Ho, 2010).

Within a charity model, disability is considered a deviation based on personal circumstance, located within the individual, with responsibility shared by the community for providing assistance. The public response to disability within this model is to evoke sympathies of others to provide charitable aid. The legacy of the charity model is evident in fund-raising efforts and political activism that make emotional appeals to aid the less fortunate.

Medical Model of Disability

Based in medical practice that dates back to at least the early 1800s, the medical model regards disability as a defect or undesirable abnormality located within the individual. In the medical model, health care providers assume responsibility for diagnosing the “problem” and determining treatments to cure or rehabilitate the person. Interventions may include surgeries, therapies (e.g., speech or physical therapy), special education services, or assistive technologies customized for the individual. Within a medical model, public health has often focused on determining the cause of the disabling condition and developing interventions to prevent additional cases in the population. For example, Oakley (2009) describes the compelling story of work during the 1970s and 1980s to identify the epidemiology and then etiology of many cases of neural tube defects (such as found in spina bifida). As a result, public health campaigns beginning in the early 1990s directed resources to increasing pre-conception intake of folic acid by women of childbearing age through supplements and, in some countries, fortification of foods. Similarly, global public health recognized the prevention of microcephaly in newborns due to mosquito-born Zika virus as a public health emergency (Landry et al., 2017).

The history of the medical model in preventing disabilities also has a dark side. In efforts to prevent developmental disabilities—disabilities evident at birth or in childhood—a number of countries legalized eugenics practices through the forced sterilization of persons with disabilities (Block, 2002; Thomson, 2010). A “new eugenics movement” is emerging in the early 21st century, where professionals’ judgments again contribute to premature termination of the lives of persons with disabilities (e.g., terminated pregnancies based on prenatal testing, nontreatment of extreme prematurity at birth, and euthanasia for persons with intellectual disability; see e.g., Reinders et al., 2019). Less controversial but more pervasive has been the “medicalization” of disabilities, whereby the condition contributing to the impairment is the primary focus of intervention. The contribution of environment, including discriminatory practices and physical barriers, is often neglected in understanding the disability experience from a medical model view.

From the 1920s to the present, disability policy in Western countries such as the United States and parts of Europe focused on segregating persons with significant disabilities from the rest of society. Institutionalization became a common practice of “warehousing” persons with severe disabilities in increasingly inhumane conditions. Children with severe disabilities were routinely removed from their families. Whether removed or not, they were rarely accorded adequate education. Practices like these led persons with disabilities and families to have strong mistrust of public health and governmental programs.

Within a medical model, disability is considered pathological, located within the individual, and diagnosed by a professional. A public health focus within this model defines desired outcomes as prevention of the condition or rehabilitation of the individual. One legacy of the medical model is evident in surveys that use questions about medically diagnosed conditions to identify respondents with disability (e.g., Down syndrome, stroke).

Functional Model of Disability

The functional model of disability is rooted in the work of Saad Nagi from the mid 1960s (Nagi, 1991). This model concentrates on the functional implications an impairment has on one’s life situation. Loss of a finger is critical to a pianist, but less impactful to a schoolteacher. The functional model differs from a medical model in focusing on the functional limitations without regard to the underlying cause of the limitations. For example, cerebral palsy, spinal cord injury, and stroke can all lead to difficulties in two functional activities: walking and communicating. Interventions developed under the functional model focus on providing the services and equipment needed to restore a person’s maximal levels of function. Additionally, unlike the medical model where diagnosis is made without reliance on severity, the functional model considers severity of the limitation. For example, in countries with social benefits programs, persons receiving assistance are often those with the most severe functional limitations.

Within a functional model, one role of public health is to promote the health of persons with existing functional limitations. Examples include estimating prevalence and severity of functional limitations, initiating programs to prevent comorbid conditions (e.g., physical activity to prevent diabetes), and instituting policies for systemic changes to minimize barriers. Examples are improved access to health information for the Deaf community, increased accessibility of sidewalks for persons with visual or mobility limitations, and increased access to information technology for persons with limitations in mobility, vision, hearing, communication, or cognition.

Within a functional model, disability is seen as a functional limitation, located within the individual, determined by the individual and professional (in the case of service eligibility), and the desired outcome is to improve or restore functioning. Many population surveys use questions on self-reported functional limitations to identify respondents with disabilities.

Social Model of Disability

The international disability advocacy movement that began in the middle of the last century dramatically changed views of disability. Protesting their situations, disability advocates upended the dominant medical model by directing focus to the contexts in which they were required to live (Oliver, 1983, 2013). A social model defines disability as residing in the social environment and not in the individual (e.g., Shakespeare, 2017). The question changes from “what is wrong with you?” to “what is wrong with your setting?” Within this model, the disability experience is largely the result of societal policies and social attitudes that create inaccessible environments for persons with limitations (e.g., Barnes, 2020). Public health’s role is to reduce the barriers in physical and social environments that prevent persons from fully participating. For example, these include eliminating the physical barriers, policies and attitudes that preclude persons who use wheelchairs from accessing education, employment, and recreation. The social model shines a spotlight on stigma, discrimination, and system organization as major barriers to health care, education, employment, and social participation for persons with disabilities (e.g., Hästbacka et al., 2016; Shur et al., 2017).

Technology demonstrates the verity of the social model—technological solutions reduce barriers and expand access. Accessible web-based platforms provide access to information, social media expands social networks, and telehealth improves health care access. Emerging artificial intelligence technologies personalize web-based interfaces to each user’s functional preferences, while three-dimensional printers manufacture relatively inexpensive prostheses in remote areas. Many technological advances, however, are largely limited to middle- and high-income countries, and to persons with adequate income and reliable energy sources.

Within a social model, disability is socially constructed, located in the environment, and determined by the person experiencing exclusion. Remediation occurs through changes in environments, policies, and attitudes to increase opportunities for all members of society. Measuring disability within the social model examines aspects of environments that contribute to the disabling experience, such as inaccessible equipment or public buildings, or discriminating policies and exclusionary attitudes.

The International Classification of Functioning, Disability and Health Framework

Among efforts to integrate medical and social models of disability, the most popular is the International Classification of Functioning, Disability and Health (ICF). Developed by the WHO and unanimously approved by the World Health Assembly in 2001, the ICF serves as both a classification system and a conceptual framework (Cerniauskaite et al., 2011). A successor to the 1980 International Classification of Impairments, Disabilities, and Handicaps, the ICF provides a taxonomy of classification codes, with detailed specification at multiple levels (WHO, 2001). As a conceptual framework, figure 1 shows relationships among key constructs. In the ICF, functioning refers to all body functions, activities, and participation, while disability is an umbrella term for impairments in body function and structure, limitations in activity, and restrictions in participation. Body functions and structures address the body level of disability at a more cellular level and align most closely with a traditional medical view. Activities relate to basic functions at the level of the individual (e.g., ability or inability to walk) that reflect goals of rehabilitation. Participation addresses more complex functions required to engage in major areas of life, such as education, employment, family life, and civic engagement. To illustrate: Assistive technologies and environmental accommodations can enable a person with spinal cord injury (impairments) that limits walking (activities) to work, be a vital part of family life, and serve in public office (participation). The ICF framework (see figure 1) acknowledges the simultaneous impact on the disabling experience of health conditions, environmental factors, and personal factors.

Figure 1. The International Classification of Functioning, Disability and Health (WHO, 2001).

Explicit inclusion of environmental factors incorporates a social view of disability into the ICF and embodies a traditional public health approach that recognizes the critical role of environment on health.

Within the ICF framework, the disability process is influenced by health conditions, environments, and personal factors. Disability is located in the interaction of the person and environment, largely determined by the person experiencing disability. Remediation typically occurs through changes in either or both the person and the environment that promote participation of persons with disabilities. The ICF has highlighted the challenge of measuring prevalence of disability as a person/environment unit (e.g., Perenboom & Chorus, 2003). As a result, population surveys typically resort to identifying “disability” as “persons with disabilities” using person-reported functional limitations or diagnoses. Recent calls for the revision of the ICF address the need to increase awareness of personal agency and social determinants as influencing the disability experience, and to reduce the misperception that health conditions have greater influence than environmental and social factors (Heerkens et al., 2018; Mitra & Shakespeare, 2019).

The Human Development Model of Disability, Health and Wellbeing

Since at least the beginning of the 21st century, writers from various disciplines have advocated applying the Capability Approach (Nussbaum, 2006; Sen, 2009) to view disability. This is now manifest in Mitra’s (2018b) Human Development Model of Disability, Health and Wellbeing (HDM). It brings explicit attention to Resources and Structural Factors as influencing a person’s experience of disability. In the HDM model, functionings refer to achievements—what a person is doing, and capabilities refer to the practical opportunities available to a person—what they may do. Health deprivations include impairments and health conditions as defined by WHO (2001), with persons experiencing health deprivations at increased risk for disability. In this model, disability is defined as deprivation in functionings or capabilities among persons with impairments or health conditions. Disabilities are specific to the nature of how they impact functionings and capabilities (e.g., employment participation, social inclusion). Central to HDM is the idea of a conversion function, whereby persons with health deprivations convert resources into functionings and capabilities. The HDM and the work leading to it has sparked interest, debate, and application (e.g., Bickenbach, 2014; Hästbacka & Nygård, 2019; Mitra, 2014; Yeung & Breheny, 2019). Impairments and health conditions result from the interaction of many socioeconomic determinants, including resources and structural factors. Figure 2 shows the bidirectional relationships among these constructs.

Figure 2. The human development model of disability, health, and wellbeing (Mitra, 2018a).

Within the HDM model, disability is identified by the person with limitations and occurs at the intersection of person, environment, and resources. An increase in functionings and capabilities can result in outcomes of justice and improved wellbeing. The HDM model holds promise for examining how personal, social, physical, and economic factors inter-relate in creating the disability experience.

As presented in table 1, these alternative models vary along key dimensions.

Table 1. Comparison of Alternative Models of Disability

Model

Designator of disability

Locus of disability

Outcome focus

Charity

Others

Person

Aid

Medical

Health professional

Person

Prevent/Rehabilitate

Functional

Professional/Person

Person

Accommodate/Provide services

Social

Person

Environment

Change environment

ICF

Person

Person/Environment interaction

Functions, Activities, Participation

HDM

Person

Person/Resource/Environment interaction

Improve wellbeing; Enhance valued functionings and capabilities

The United Nations’ Transforming View of Persons With Disabilities

The United Nations (UN) has played a critical role in developing aspirational visions and values for global public health, including persons with disabilities. Its 75-year history reveals significant shifts in use of disability models. During its early period (1945–1970), the UN relied on a charity or medical approach to disabilities, focusing on prevention, rehabilitation, and vocational programs. A distinct shift was evident in the early 1970s, from regarding persons with disabilities as recipients of welfare and services to persons fully entitled to basic human rights (UN, 2019b). This coincided with the movement in many high-income countries to de-institutionalize persons with intellectual and developmental disabilities from large congregate care facilities and reintegrate them into their communities with services and supports. The International Year of Disabled Persons in 1981 and the World Programme of Action Concerning Disabled Persons (1982) focused on the full integration of disabled persons into society. Arguably, this marked initial integration of a social view of disability with medical and functional views. This transition was manifest in the UN General Assembly’s adoption of the World Health Organization’s International Classification of Functioning, Disability and Health (ICF) in 2001.

The World Report on Disability (WHO & World Bank, 2011), analyzed data across multiple sources to provide early prevalence estimates of global unmet need, noting the particular vulnerability of women, children, and persons with mental health disabilities. Of note, while previous UN documents focused on the burden that disability placed on society and economic development, this report considered the burden placed on persons with disabilities by how society is organized and functions (Krahn, 2011).

The Convention on the Rights of Persons With Disabilities (CRPD) of 2006 affirmed the human rights of persons with disabilities and emphasized inclusion, nondiscrimination, and accessibility (UN, 2006). The CRPD was adopted by all member countries in 2006 and as of 2016 had been ratified by 181 countries. International conventions and treaties have received criticism for being long on vision but short on outcomes, largely because they have few means for implementation and accountability (Bickenbach, 2011; Groce, 2018). The CRPD provides an exception, with clear legal responsibilities of ratifying countries and goals that can be cross-walked to the ICF framework (Bickenbach, 2011). The CRPD ties the wellbeing of persons with disabilities to economic development goals. It argues that inclusion of persons with disability is essential for overall economic development. The World Health Organization (WHO) Global Disability Action Plan 2014–2021 provided guidance for member countries in improving health care access and health outcomes for persons with disabilities.

The UN 2030 Agenda for Sustainable Development of 2015 provides a visionary framework for global development. Pledging to leave no one behind, it considers disability an issue that cuts across the 17 Sustainable Development Goals (SDGs) and 169 targets. Unlike the Millennium Development Goals (2000–2015), it explicitly addresses disability in seven targets. The SDGs serve as the framework for the Disability and Development Report—Realizing the SDGs by, for and With Persons With Disabilities, 2018 (UN, 2019a). For the first time, this report brings forward comparable data on disabilities across multiple countries to report on country-level and aggregate statistics on variables aligned with the SDGs. These data became available because many countries adopted a standard set of disability identifiers based on the Washington Group questions.

Improved Data—The Washington Group Disability Question Sets and the Model Disability Survey

The Washington Group has led collaborative work across multiple countries to improve measurement of disability in surveys for international use.

Washington Group Disability Question Sets

The Washington Group (WG) is a UN Statistics Commission City Group with representatives from over 135 countries. It incorporates input from various international agencies and experts, including disabled persons organizations. Founded in 2001, the WG developed question sets for use in censuses and surveys to identify persons with disabilities as conceptualized from an ICF framework to provide comparable data cross-nationally. They serve as valid disability identifiers that allow data to be stratified by disability status, enabling comparisons between persons with disabilities and other populations. By 2018, the questions had been used in at least 55 country censuses and surveys. When identification questions are used in combination with other questions on the survey (e.g., education, employment), they can begin to identify gaps in participation. The portfolio of WG surveys includes several question sets. All are available in multiple languages (Washington Group on Disability Statistics, 2021).

Released in 2006, the Washington Group Short Set (WG-SS) consists of six questions on universal domains of basic activity. The six questions ask about difficulty due to a health problem in seeing, even if wearing glasses; hearing, even if using a hearing aid; walking or climbing steps; remembering or concentrating; communicating in one’s usual language, such as understanding or being understood; and difficulty with self-care, such as washing all over or dressing. Response options capture degree of severity, as no difficulty, some difficulty, a lot of difficulty, cannot do at all.

The Washington Group Short Set on Functioning—Enhanced (WG-SS Enhanced) embeds the six WG-SS questions and adds six questions on upper body functioning (large and fine movement), anxiety (frequency and severity), and depression (frequency and severity). The Washington Group Extended Set on Functioning (WG-ES) adds questions in the areas of pain and fatigue as well as more specific questions about the basic activities of WG-SS and enhanced psychosocial areas of WG-SS Enhanced. Developed in conjunction with the International Labor Organization and adopted in 2019, the Washington Group/ILO Labor Force Survey Disability Module (LFS-DM) is intended for working-age adults. It includes sections and questions on disability identification, barriers to employment, accommodations necessary for employment, attitudes, and social protection.

To identify children with disabilities, WG collaborated with UNICEF to develop the Child Functioning Module (CFM). Finalized in 2016, the CFM includes two versions for administration to primary caregivers: a version for children aged 2–4, and one for children aged 5–17. The functional domains covered for all ages include vision, hearing, mobility, communication/comprehension, behavior, and learning. For ages 2–4, areas include dexterity and playing; for 5–17, areas include self-care, remembering, focusing attention, coping with change, relationships, and emotions. The response options for most questions are again no difficulty, some difficulty, a lot of difficulty, cannot do at all. Reliability and validation of this measure have been documented in a range of low- and middle-income countries including Mexico (Loeb et al., 2017), Fiji (Sprunt et al., 2019), Cameroon and India (Mactaggart et al., 2016), South Africa (Visser et al., 2016), and Uganda (Zia et al., 2020).

Model Disability Survey

In 2012, WHO and the World Bank developed the Model Disability Survey (MDS) and a Brief version in 2016 that asks about aspects of living that are appropriate for persons with and without disabilities. The full survey asks about income, employment, support and relationships, attitude of others, accessibility to information, functioning, work and schooling, environmental facilitators, health care utilization, wellbeing, and empowerment. Pilot testing of the MDS in Oman affirmed a disability prevalence rate of approximately 15% (Al-Mawali et al., 2018). The Brief MDS was implemented with Tajikistan, India, and the Lao People’s Democratic Republic. The study showed that severity of disability related to more health conditions, less access to health care, very low use of assistive devices, worse economic situation, and less access to communication technology (internet and telephone; WHO, 2019).

The UN Flagship Report on Disability and Sustainable Development Goals, 2018

This landmark report, Disability and Sustainable Development Goals, 2018 (UN, 2019a) presents a comprehensive review of frameworks, data, policies, and examples of best practices for considering disability within the 2030 Agenda for Sustainable Development Goals (SDGs). It provides all-new global comparative and aggregate data across countries based on the Washington Group Short Set of disability questions, comparative multi-country data for some topics, and some crowd-sourced data. These data represent the most current and comprehensive disability data to 2018 to inform global public health. The full report also describes promising practices and policy strategies to achieve the goals. Table 2 summarizes data from the report organized by SDG goals (frequently from a limited number of countries). The data points vary greatly in terms of how many countries and which countries have contributed data—where available, the table indicates in parentheses the number of countries providing data.

Table 2. Summary of Key Goals and Findings of the United Nations’ Disability and Development Report, 2018 (UN, 2019a)

SDG 1. Ending poverty in all its forms

Persons with disabilities are much more likely to live in poverty.

Relative multidimensional poverty rates show an average difference of 11 percentage points between persons with and without disabilities (22 countries contributed data).

Extra costs associated with disability represented 21–40% of average income for persons with moderate disabilities and 39–70% for those with severe disabilities (7 countries).

Countries vary greatly in social protection programs. Only 27% of persons with disabilities received social protection benefits according to a 2016 global estimate.

SDG 2. Achieve zero hunger

Persons with disabilities are more likely than the general population to experience hunger, food insecurity, and be unable to afford protein in their diet.

36% of households of persons with disabilities and 23% of non-disability households did not always have food to eat (8 countries).

Women and girls were more likely than men and boys to experience this hunger gap.

SDG 3. Ensuring healthy lives and promoting wellbeing

Persons with disabilities are much more likely to report poor health.

42% of persons with disabilities reported poor health vs. 6% of general population.

Persons with disabilities were 3–6 times more likely to report poor mental health (6 countries).

Persons with disabilities reported 3 times the rate of unmet health needs (13%) relative to persons without disabilities (4%) (37 countries).

SDG 4. Ensuring inclusive and equitable quality education

Persons with disabilities, especially women and girls, are less likely to attend school and be literate than those without disabilities.

Children with disabilities were 2–8 times more likely to not attend school, and less likely to complete primary and secondary schools.

Adults with disabilities had lower literacy rates (54%) than adults without disabilities (77%).

SDG 5. Achieving gender equality and empowering all women and girls with disabilities

Women and girls with disabilities experience discrimination based on gender compounded with discrimination based on disability.

Women with disabilities were more likely to live in poverty than men with disabilities, e.g., United States (6% gap), Republic of Korea (3% gap).

Women with disabilities experienced lower literacy rates (45%) than men with disabilities (61%).

Women with disabilities had the lowest employment rate (32%), followed by men with disabilities (43%), women without disabilities (50%), and men without disabilities (70%).

SDG 6. Ensuring availability of water and sanitation

Persons with disabilities have less access to clean water and sanitation.

16 percentage points gap between persons with and without disabilities to have access to clean water and up to 23 percentage points gap for improved sanitation (34 countries).

SDG 7. Ensuring access to energy

Persons with disabilities have greater need for access to energy, yet have less access.

Less than 50% of households with disabilities had access to electricity (17 countries).

SDG 8. Promoting full and productive employment and decent work for persons with disabilities

Globally, employment rates for persons with disabilities remain much lower than persons without disabilities.

Northern America had the largest employment gaps between persons with (30%) and without disabilities (69%) (8 global regions).

Barriers to employment include discrimination, lower education, lower literacy, and lack of accessible transportation.

SDG 9. Increasing access to information and communications technology

Persons with disabilities have less access to technology.

Persons with disabilities used the internet at about half the rate of persons without disabilities (19% vs. 36%) (14 countries).

Barriers included inability to access the internet through work, inability to afford household internet services or the devices (computer, smartphone), and unavailability of services in some areas.

SDG 10. Reducing inequality

Most countries still discriminate in major life activities, especially for persons with intellectual and psychosocial disabilities.

Very few countries had no restrictions for persons with psychosocial disabilities to marry (36%), vote (13%), or serve in public office (9%) (168 countries).

Up to 10% of persons with disabilities lived in institutions, with 2–3 times the rate of physical and emotional neglect.

Persons with psychosocial disabilities were much less likely to be married (20%) compared to persons with other disabilities (37%) and persons without disabilities (38%) (8 countries).

SDG 11. Making cities and communities inclusive and sustainable for persons with disabilities

Communities are not always inclusive of persons with disabilities.

Persons with disabilities report barriers in homes (15%) and public spaces and transportation (30%).

Barriers are more common in rural areas.

SDG 13. Targets 1.5, 11.5. Building the resilience of persons with disabilities and reducing their exposure to and impact from climate-related hazards and other shocks and disasters

Persons with disabilities are more vulnerable in disasters.

No countries have specific emergency plans for persons with disabilities.

Almost 3 in 4 persons with disabilities reported having no personal preparedness plan for disasters (137 countries).

SDG 16. Promoting peaceful and inclusive societies for sustainable development, providing access to justice for all, and building effective, accountable and inclusive institutions at all levels

Persons with disabilities experience more interpersonal violence, exploitation, exclusion from education, and barriers to civic engagement.

Persons with disabilities are more likely to live in high crime areas.

At least one third of women with disabilities report having experienced physical or sexual violence (28 countries).

Children with disabilities, particularly intellectual disabilities, are 3–5 times more likely to experience sexual or physical violence.

86% of persons with disabilities reported not being able to receive legal advice about their rights (5 countries).

SDG Target 17.8. Increasing the availability of disaggregated data by disability

Data disaggregated by disability status are needed to identify and monitor disability-related inequities.

The Model Disability Survey WHO & World Bank, 2012 and Brief MDS (2016) is a general population survey to assess disability within an ICF framework.

The Washington Group on Disability Statistics developed disability identification question sets for use in countries around the world.

Among 214 countries or areas that conducted censuses near 2010, 120 included questions on disability; a marked increase from only 19 countries in 1970.

Vulnerability During the COVID-19 Pandemic and Other Disasters

This article was written during the onset of the global COVID-19 pandemic of 2020. As in other disaster situations, persons with disabilities are disproportionately vulnerable (Armitage & Nellums, 2020; Boyle et al., 2020; Landes et al., 2020). In this pandemic, they have increased risk of contracting COVID-19 because they may rely on close-contact assistance, may live in close quarters with multiple other persons, may not have access to technology and safety information, may rely on public transportation, or may have limited access to water for hand-washing. Early data from the United States show persons with developmental disabilities under the age of 75 dying of COVID-19 at higher rates than the age-matched general population; this disparity was not evident in Sweden or the Netherlands (Turk et al., 2020). Higher mortality among younger persons with disabilities due to COVID-19 correlates with more comorbid health conditions, although concerns have also been voiced of discriminatory treatment in hospitals. As governments across the globe have hastily developed approaches to address this health and economic crisis, persons with disabilities have been at high risk of being left on the periphery once again (Jalali et al., 2020; Kuper et al., 2020). At the onset of the pandemic, many countries struggled with insufficient testing to detect the virus, personal protective equipment to protect health and personal care personnel, and ventilators to support breathing for those most critically ill. As rationing of tests has occurred and plans developed to prioritize treatment in the event of over-whelmed health care facilities and vaccinations in the event of shortages, multiple groups have advocated for priority attention to persons with disabilities (e.g., Armitage, R., & Nellums, L. B., 2020; Center for Inclusive Policy, 2020; United Nations Department of Economic and Social Affairs, 2020).

Similarly, persons with disabilities experienced twice the death rate following the 2011 tsunami in Japan, and less likelihood of evacuation post-hurricane in the United States (National Council on Disabilities, 2006). The aftermath of disasters also affects persons with disabilities and their families more negatively. Access to usual services and supports get disrupted and records on plans for disability supports may be lost. In disasters related to climate change, persons with disabilities are more likely to live in areas prone to flooding, are more likely to be abandoned in the rush to evacuate (Rush, 2018), and may be less able to communicate their location or needs because of personal limitations or lack of access to mobile phones or computers. Adopted in 2015, the Sendai Framework for Disaster Risk Reduction 2015–2030 emphasized the importance of disability-inclusive disaster risk reduction. It called for the inclusion of persons with disabilities in designing and implementing the policies, plans, and standards for disaster risk reduction. The value of the plan will only be demonstrated through its implementation.

Moving Forward to Improve the Wellbeing of Persons With Disabilities Globally

How can global public health manifest substantive changes so that the disparities reported in 2030 are much lower than those of 2018? As a result of concerted efforts, promising advances are evident, particularly in low- and middle-income countries (LMICs). To illustrate, data on disability are improving dramatically. Among 214 countries or areas that conducted censuses near 2010, a total of 120 included questions on disability, a marked increase from only 19 countries in 1970 (UN, 2019a). Research on environmental factors has documented and addressed the accessibility of health care facilities in Ghana (Agbenyo et al., 2017), Canada (Paez et al., 2010), and the United States (Mudrick et al., 2012), and examined changes in Hong Kong’s public transportation following the Disability Discrimination Ordinance in 1995 (Chan, 2010), and assessed wheelchair accessibility of public buildings in Ghana (Yarfi et al., 2017).

Raising the Visibility of Persons With Disabilities and Their Families

At a minimum, a number of strategies are proposed to increase the visibility of persons with disabilities and their families.

Incorporating Voices of Persons With Disabilities and Families

The shift from the charity and medical models to integrated models of disability requires global public health to shift into shared responsibility with persons with disabilities for developing the agenda. “Nothing about us without us” disability advocates have long called for a stronger disability voice in all matters concerning their welfare, including global public health. Incorporating those voices means ensuring opportunities for persons with disabilities and their families for board memberships, staff positions, professional training, and advisory committees. Further, community-based participatory approaches (CBPAs) actively engage members of affected communities to identify and prioritize the issues and strategies of most importance to them and include incorporation of local cultural values and views (e.g., Mbazzi et al., 2020). The CBPAs address needs of marginalized communities and vulnerable populations who have fewer opportunities to exercise their voices (Bradbury-Jones et al., 2018; Chappell et al., 2014), and they have been used successfully in disability communities where it is often referred to as Participatory Action Research (PAR; e.g., Kramer et al., 2011). Researchers using PAR attempt to transform power relationships in the research process using methods such as co-production of tools and interventions. PAR has been used extensively and effectively in the Global South (Berghs, 2017; Mathias et al., 2019).

Reducing Disability Stigma and Discrimination

Key contributors to experienced disability are stigma (attitude) and discrimination (behavior). A population-based study of Australians with disabilities found 14% of respondents reported having experienced discrimination in the past year, with higher rates for younger people, those with more severe impairments, and those with intellectual disability (25%). Discrimination was associated with more than twice the psychological distress and 1.6 times the likelihood of poor self-rated health (Krnjacki et al., 2018). These self-reports of discrimination are likely an underestimate because they do not include institutionalized groups and the less overt systemic discrimination that is embedded in exclusionary policies and lack of opportunities.

Inclusion of persons with disabilities in research is considered a civil rights issue (McDonald & Raymaker, 2013), yet researchers often exclude persons with disabilities in studies. Systematic exclusion occurs through exclusion criteria (e.g., pre-existing conditions, reading level), institutional review board requirements, and generic barriers to participation such as need for transportation or internet access. A notable example is a 2020 proposal by the U.S. Preventive Services Task Force (USPSTF) in its draft research agenda on screening for depression, anxiety, and suicide. The USPSTF plans to categorically exclude persons with developmental or physical disabilities (USPSTF, 2020) from consideration in the research plan.

Special Olympics International is directly attacking stigma and discrimination related to intellectual disabilities (formerly referred to as mental retardation). Examples are its Best Buddies program to promote one-on-one friendships with persons with intellectual and developmental disabilities (IDD), and its Spread the Word to End the Word campaign to eliminate use of the word “retardation” and its negative associations.

Recommended Actions to Increase Visibility and Voice

Seek persons with disabilities for board members, staff positions, consultants, advisory groups.

Include persons with disabilities in research.

Use CBPA.

Use disability positive or neutral language and images in all communications.

Data to Document Problems and Progress

Data drive decisions on policies, programs, and practices. Complementary strategies for improving data for global public health include use of data frameworks for a comprehensive picture of data availability and data gaps, inclusion of disability identifiers in large databases, routine analysis by disability status, using administrative data of disability services, and exploring data linkage and harmonization strategies.

Using a Model Framework for Disability Data

Analytic findings have most impact when communicated in ways for ready uptake by policymakers, program planners, and disability groups. Australia has developed what may serve as a model process and framework for disability data to inform policies and programs (Fortune et al., 2020). Developed in collaboration with persons with disabilities, the hierarchical data framework addresses health, social determinants, and service systems, subdivided into domains, topics, and 128 indicators. Of these, developers could identify data sources for 73% of indicators. Most indicators have relevance for persons with and without disabilities to allow for equity comparisons, while some indicators are unique to persons with disabilities (e.g., disability-related discrimination).

Inclusion of Disability Identifiers in Surveys and Censuses

Identifying, understanding, and monitoring public health inequities experienced by persons with disabilities requires that the relevant databases include variables on disability status and type of functional limitation. The inclusion of the Washington Group disability identification questions in national surveys and censuses has dramatically increased the ability to disaggregate data for disability status and to compare populations. While some countries such as Australia, England, and Scotland have strong identification of intellectual disability and developmental disabilities (IDD) in their datasets, others such as the United States are calling for improved visibility of persons with IDD in national data sets (Krahn, 2019; Turk et al., 2020).

Routine Analyses of Data by Disability Status

This practice can inform many areas of public health. Similar to analyses on other demographic characteristics (income level, urban/rural location, sex, and race/ethnicity), routine analyses by disability status can help identify needs and inequities of persons with disabilities within a larger population. This, in turn, informs outreach and implementation approaches for target communities. To illustrate, health promotion programs often target specific outcomes such as diabetes management. If persons with disabilities globally experience diabetes at about 2.5 times the rate of the general population and they represent 15% of the population, then the target group for diabetes intervention is composed of 35–40% persons with disabilities. If these potential participants are not effectively included, efficacy of the intervention drops. By accommodating the target population that has disabilities, program implementers can increase effectiveness of their intervention program.

Increased Use of Administrative Data

Administrative data are collected through the administration of service programs and can include valuable information about persons with disabilities. While administrative databases include only those persons receiving services, these data can provide rich information on health status and indicators specific to this population (e.g., Bonardi et al., 2019). Friedman et al. (2018) systematically searched the global literature to identify use of administrative data on prevalence of IDD in 12 countries. Studies varied in definitions and questions used to ascertain IDD, the numerator and denominator groups to estimate prevalence, and not surprisingly, in the estimated prevalence rates.

Data Linkage and Harmonization

Integrating data across diverse sources is challenging. Differing case definitions of disability, segments of the population sampled, data collection methods, and inconsistency of categories within variables (e.g., cut-points for age, income) pose problems for combining datasets and using them for analytic comparison. Notwithstanding these difficulties, efforts that link data or harmonize findings across data sets have proven highly useful for increasing knowledge about disability and health status of persons with disabilities (e.g., Balogh et al., 2019). These strategies will become even more useful as data analytics improve the ways in which large data sets can be managed.

Recommended Actions to Improve Data

Continued uptake of the Washington Group disability questions or their equivalents in international censuses and national surveys, wherever possible.

Data-mine administrative datasets for information on wellbeing of participants with disabilities; include data linking and harmonizing methods.

Conduct analyses comparing persons with disabilities to persons without disabilities, within and between all participating countries. Attend to intersectionality of disability with gender and poverty. Wherever appropriate, in addition to disability status in aggregate, conduct analyses stratified by groups of functional limitations (vision, hearing, mobility, cognition, and communication).

Implement disability data frameworks to build a more comprehensive picture of the data gaps and needs of persons with disabilities.

Public Health Interventions to Advance Wellbeing of Persons With Disabilities

A twin-track approach is advocated for intervention with persons with disabilities. The first track comprises disability-specific approaches designed to meet the unique needs of persons with disabilities. The second track involves inclusion of persons with disabilities in mainstream intervention programs and in national development goals. The intent is to use mainstream approaches when possible, disability-specific when necessary.

Disability-Specific Approaches

Approaches used specifically for persons with disabilities provide services or solutions to the individual experiencing disability.

Rehabilitation Services. Stemming from a medical model of disability, rehabilitation services are intended to remediate or compensate for the functional limitations of persons with disabilities. Renewed global attention to rehabilitation services followed the World Report on Disability in 2011, particularly in the Global South. Examples were calls for improved professional preparation for rehabilitation services in Bangladesh (Rahman, 2019), South Africa (Williams et al., 2017), and globally (Pucillo et al., 2018); development of a national rehabilitation plan for the Ukraine (Gutenbrunner et al., 2018); and attention to the need for rehabilitation services in international disaster relief (Reinhardt et al., 2011).

Assistive Technology. Greater access to assistive technology and devices is an important component of the disability-specific track. Devices such as wheelchairs, hearing aids, and augmentative communication devices are customized to help the individual participate in education, employment, and civic life. Persons in many LMICs still experience high unmet need for assistive devices and the electricity to power them. In high-income countries, payment for device purchase and repair are a barrier for many. One billion people are estimated to need one or more assistive products with that number rising to 2 billion by 2030, yet only 10% of them have access to needed assistive products (WHO, 2018a). Policy directions to increase access include using a user-centered approach to assistive technology, identifying funding mechanisms, establishing standards and regulations for products and monitor for priority products, improving data collection of need and access, and stimulating research and innovation (WHO, 2018a, 2018c)

Inclusion or Mainstreaming Approaches

Universal Design. In contrast to assistive technologies intended for use by the person with limitations, universal design (UD) is a way of designing environments and products that make them usable to persons of many ages, sizes, and ability levels (National Disability Authority, 2020). Principles of UD were developed to promote ease of use, adaptability for multiple needs, and accessibility to a wide range of users, as well as safety to prevent injuries (e.g., repetitive movement injuries; see Null, 2015; Preiser & Smith, 2011). Designs that accommodate persons with mobility, cognitive, communication, or sensory limitations almost always benefit other groups as well. Ramps for wheelchair access are used by persons with bicycles, baby carriages, and delivery carts; Easy Read versions of documents for persons with cognitive limitations are highly useful for persons with low literacy or professionals with time limitations. Principles of UD are popular in education, information technology, and public building design (Capp, 2017; Gallud & Penichet, 2019; Kim & Chang, 2018).

Inclusion in Public Health Programs—the Example of Noncommunicable Diseases. A guiding assumption of a twin-track approach is that persons with disabilities can be served effectively for shared concerns through mainstream public health actions. For example, noncommunicable diseases (NCDs), also referred to as chronic conditions, are a major contributor to morbidity, mortality, and quality of life. Globally, an estimated 85% of NCD-related morbidity and mortality occur in LMICs (WHO, 2018c). Efforts are underway for a strategic global research approach to use established interventions and implementation science approaches within LMIC contexts (Aifa et al., 2019; Engelgau et al., 2018). It is known that NCDs lead to disability. What is only recently recognized is that persons with pre-existing disabilities are at higher risk, sometimes much higher risk, for acquiring NCDs. Since the 2010s, research has highlighted the health threats of NCDs for persons with disabilities, such as dramatically higher rates of diabetes, cardiovascular disease, and other NCDs (Reichard & Stolzle, 2011; Reichard et al., 2011); higher incident rates of newly diagnosed diabetes and early onset of heart disease (Krahn et al., 2015); with different types of disabilities relating to different health risks (Reichard et al., 2015). Whether NCDs lead to disability or result from disability has major implications for when and how to intervene (e.g., Krahn et al., 2014). These findings indicate a critical need for inclusion of persons with functional limitations in global efforts on prevention and management of NCDs.

Persons with disabilities can benefit from health promotion programs to much the same extent as the general population. A pragmatic strategy, then, is to include persons with disabilities in mainstream health prevention and disease promotion programs, providing adequate supports and accommodations (e.g., Benjamin et al., 2013; UN, 2019a). A scoping review of reviews of generic public health across 688 studies found about half of the interventions were nominally inclusive, although disability theory or values of dignity and equity were rarely considered (Berghs et al., 2016). Persons with physical disabilities were more likely to be included, while those with severe disabilities, rare forms of disabilities, and intellectual disabilities were more likely excluded. The authors concluded that public health globally is still struggling with inclusion in mainstream interventions.

To determine what accommodations are needed for inclusion of persons with disabilities in mainstream interventions, researchers reviewed all public health interventions with sufficient evidence to be included in the United States’ Centers for Disease Control and Prevention Community Guide (Hinton et al., 2017). Using literature reviews, key informant interviews, and input from persons with disabilities, they determined 26 of 91 interventions needed no adaptation (e.g., general policies regulating tobacco sales), 41 needed adaptations to make information accessible for persons with sensory and cognitive limitations, 33 needed training adaptations for program implementers, and 16 needed other adaptations such as peer support networks. Other authors have begun to outline practical steps for inclusive practice in community programs, such as inclusive physical activity (Stinson et al., 2020).

Recommended Actions for Interventions

Utilize CBPA to develop, implement, and monitor effectiveness of plans to increase rehabilitation services and equipment.

Promote awareness of the importance and need for assistive technologies.

Expand use of UD in designing spaces, equipment, and educational programs.

Routinely plan for the inclusion of persons with disabilities in all interventions. This requires understanding the prevalence of disabilities within the target population, determining the accommodations needed to effectively implement the programs, and monitoring the relative success of interventions.

Many Roles to Increase Inclusion of Persons With Disabilities in Global Public Health

The United Nations (UN) has developed a vision of inclusion and human rights for persons with disabilities. The UN Secretary-General’s office recently reviewed the UN’s performance regarding disability inclusion within their own organization. This resulted in an accountability framework to increase systemic disability inclusion throughout the UN (UN, 2019c). The framework is based on intersectionality that simultaneously considers multiple personal characteristics (e.g., disability, gender, race, ethnicity, religion, class, poverty) to avoid siloed strategies.

International nongovernmental organizations, alliances, and foundations (e.g., Inclusion International, Special Olympics International) serve as critical advocates for human rights; create opportunities for innovations in services, outreach, and training, and cross-country exchanges; and bring visibility to inequities.

National and local governments hold responsibility for legislation to protect against discrimination, institute and fund social benefits programs including family support programs, include disability indicators in censuses and other national or local surveys, create leadership and employment opportunities for persons with disabilities, and incentivize businesses and organizations to adopt inclusive practices. Members of the International Association of National Public Health Institutes are called on to address systemic disability inclusion in public health programs and policies in many countries.

Public health practitioners hold the responsibility for taking action at the local level with disability inclusive practices, ensuring that meetings and trainings are held in accessible spaces and manners, including disability representatives in boards and committees, and communicating in accessible ways.

Disability organizations hold the responsibility for giving voice to the lived experience of disability, advocating for changes in programs and policies, and disseminating information to their constituents.

Academics hold the responsibility to conduct meaningful and valid research, while also imbuing knowledge, skills, and values of equity to the next generation of researchers and teachers.

Persons with disabilities and their families hold the responsibility, as do all persons, to become sufficiently health literate and engaged in behaviors that maximize their wellbeing.

Where is disability in global public health? From being largely invisible, disability in global public health appears to be at a tipping point. Concerted effort is needed to elevate the importance and need for greater inclusion of persons with disabilities in all of global public health to support human rights and reduce disparities in health and wellbeing.

Further Reading

References