Despite the passage of the Americans with Disabilities Act (ADA) more than 30 years ago, people with disabilities experience significant barriers to exercising their right to sexual and reproductive health throughout their life course. The historical segregation and stigmatization of disabled individuals has created the conditions in which members of this population experience persistent disparities in the prevalence of adverse health conditions and inadequate attention to care, along with disparities in preventive care, health promotion, and access to health care services. These disparities manifest in social services and health care generally and also in the sphere of sexual and reproductive health.
Among many direct care workers, health care providers, and family members, assumptions persist that individuals with disabilities are asexual, unable to exercise informed consent to sexual activity, and unable to carry a pregnancy to term or to parent successfully. These assumptions adversely affect the ability of individuals with disabilities to access basic information about their sexual health and function in order to make informed decisions about their sexual activity, and also impact their access to preventive health screening, contraception, and perinatal care. Inadequate transportation and physically inaccessible environments and equipment such as examination tables pose additional barriers for some disabled individuals. A lack of training in disability-competent care among health care professionals is a pervasive problem and presents yet another challenge to obtaining appropriate and necessary information and care. Despite these barriers, the research shows that more and more women with disabilities are having children, and there is an increasing recognition that people with disabilities have a right to sexual expression and appropriate sexual and reproductive health care , accompanied by a gradual evolution among social services and health care providers to provide the necessary information and support.
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Article
Michelle Villeneuve
People with disability are disproportionately impacted by disaster events. They are two to four times more likely to die in a disaster, experience higher risk of injury and loss of property, have greater difficulty evacuating, sheltering, and require more intensive health and social services during and after disaster. While these impacts stem from a range of factors that increase the vulnerability of people with disability to disaster, a significant barrier to the safety and well-being of people with disability is their absence from emergency management practice and policy formulation. In 2014, the United Nations Office for Disaster Risk Reduction recognized this as a universal challenge. Global Disability-Inclusive Disaster Risk Reduction (DIDRR) initiatives and policy advocacy has helped to advance the incorporation of accessibility, inclusion, and universal design principles into the Sendai Framework for Disaster Risk Reduction (SFDRR) 2015–2030. DIDRR requires shared responsibility of multiple stakeholders working together to identify and remove barriers that increase risk for people with disability before, during, and after disaster. Yet, governments and emergency personnel are faced with the intractable problem of how to develop shared responsibility between local government, emergency personnel, people with disability, and the services that support them. Methods, tools, and programmatic guidance are needed to ensure that people with disability and their support needs are at the center of emergency management. The Person-Centered Emergency Preparedness (P-CEP) framework and process tool offers a new approach for enacting DIDRR; shifting emphasis to preparedness by people with disability in partnership with emergency personnel. The P-CEP was developed through a co-design process involving multiple stakeholders, including people with disability and their support networks. Grounded in the Capability Approach, the P-CEP integrates factors that facilitate personal emergency preparedness together with principles of person-centered planning to enable emergency managers to learn about the preparedness, capabilities, and support needs of people with disability and work together with people and the services that support them toward the development of local community-level DIDRR. The P-CEP takes an all-hazards approach by incorporating self-assessment and tailored preparedness planning for disasters triggered by natural hazard events and other emergencies (e.g., house fire, pandemic). The P-CEP has three components: (a) a capability framework consisting of eight elements to support self-assessment of strengths and support needs; (b) principles guiding the joint effort of multiple stakeholders to enable tailored emergency preparedness planning; and (c) four process steps enabling the developmental progression of preparedness actions and facilitating linkages between people with disability, their support services, and emergency personnel. The P-CEP is being used to advance individual and shared responsibilities for DIDRR in Australian communities through the incremental development of awareness about and responsiveness to the support needs that people with disability have in emergencies. Future research will apply P-CEP to the design of programs and services that: (a) increase the emergency preparedness of people with disability; and (b) ensure that information about the extra supports that people with disability need in emergencies is included in the design of disability-inclusive emergency planning.
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Kristina Petersen, Zoie Sheets, Satendra Singh, Zina Jawadi, Dawn Michael, and Lisa Meeks
For two decades, leaders in medical education have emphasized the importance of increasing diversity within the physician workforce to better reflect the general population, including people with disabilities. Historically, the barriers in medical education for the inclusion of learners with disabilities have been many. As we progress through the early 21st century, researchers are seeking to reduce or eliminate these barriers to improve access to medical school education by readily putting forth the value of disability as diversity. Inclusive and accessible learning environments for those with disabilities benefit all learners. Carrying these findings into the healthcare profession brings further evidence to show the concordance between patients and physicians with disabilities through the lived experiences of being a patient with increased empathy and patient-focused care. With the inclusion of learners and practitioners with disabilities, their lived experiences, and allies contributing to the environments and standards in medical education and the medical profession, significant contributions for equitable opportunities and improvements can be made that ultimately benefit all.
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There is extensive evidence that people with disabilities experience significantly poorer health than their nondisabled peers. These are, in part, health inequities (differences in health status that are avoidable, unjust, and unfair) resulting from increased rates of exposure of people with disabilities to a range of well-established social (and environmental) determinants of poor health, including poverty, reduced access to effective education, lack of employment or employment under hazardous or precarious conditions, social disconnectedness, violence, discrimination, and poor healthcare. They also include environmental determinants of poor health that are a direct result of human activity (e.g., outdoor air pollution resulting from industrial processes and transportation). In addition, people with disabilities are often less likely than their peers to have access to many of the resources (power, wealth, social support, problem-solving skills) that have been linked to increased resilience in the face of adversity. As such, it would appear reasonable to expect that the health of people with disabilities is as likely, if not more so, to deteriorate, when exposed to social determinants, than the health of their nondisabled peers. Future research needs to focus on two key issues. First, given that most of the current evidence has been generated in high-income countries, it is critical for future research to focus on the situation of people with disabilities living in middle- and low-income countries. Second, more needs to be known about the determinants of the resilience and/or vulnerability of people with disabilities.
Some significant limitations remain in the current evidence base, but it is clear that existing knowledge is sufficient to drive and guide changes in policy and practice that could reduce the health inequities faced by people with disabilities. These include (a) improving the visibility of people with disabilities in local, national, and international health surveillance systems; (b) making “reasonable accommodations” to the operation of healthcare systems to ensure that people with disabilities are not exposed to systemic discrimination in access to and the quality of healthcare; and (c) ensuring that people with disabilities are included in and benefit equally from local and national strategies to reduce population levels of exposure to well-established social determinants of health.
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Children and adults with intellectual disabilities have poorer health and are more likely to die sooner than their non–intellectually disabled peers. There is growing evidence that some of these inequalities in health are avoidable, unjust, and unfair, given that they are driven by the higher rates of exposure of people with intellectual disabilities to well-established social determinants of poor health. People with intellectual disabilities are more likely than their peers to: live in poverty, not be employed (or if employed to work under precarious conditions), be exposed to discrimination and violence, face significant barriers in accessing effective health care, and be less resilient when exposed to adversities. In other words, they are examples of health inequities that arise from “the societal conditions in which people are born, grow, live, work and age, referred to as social determinants of health. These include early years’ experiences, education, economic status, employment and decent work, housing and environment, and effective systems of preventing and treating ill health” (World Health Organization).
Future research needs to address three key issues. First, most of the existing evidence is based on the experiences of people with intellectual disabilities in the world’s high-income countries. In contrast, the vast majority of the world’s population live in middle- and low-income countries. The limited evidence available suggests that children with intellectual disabilities growing up in middle- and low-income countries are much more likely than their peers to be growing up in poverty and to be exposed to specific social determinants of poorer health associated with poverty such as undernutrition, poor sanitation, low levels of parental stimulation, violent parental discipline, and hazardous forms of child labor. Second, little research has focused on health inequalities and inequities among two important groups of people with intellectual disabilities: people with intellectual disabilities from minority ethnic communities and people with mild intellectual disabilities. Third, very little research has attempted to test the proposition that people with intellectual disabilities may be more or less resilient than their peers when exposed to social determinants of health.
While much remains to be learned about the inequalities and inequities faced by people with intellectual disabilities, the existing knowledge is sufficient to guide and drive changes in policy and practice that could reduce the health inequities faced by people with intellectual disabilities. These include: improving the visibility of people with intellectual disabilities in local, national, and international health surveillance systems; making “reasonable accommodations” to the operation of health care systems (e.g., introducing annual health checks into primary care services, making “easy read” materials available, employing intellectual disabilities liaison nurses in acute hospitals) to ensure that people with intellectual disabilities are not exposed to systemic discrimination; and ensuring that people with intellectual disabilities (along with all other people with disabilities) are included in and benefit equally from local and national strategies to reduce population levels of exposure to well-established social determinants of poor health.
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Sharon Reif, Margaret T. Lee, and Emily Ledingham
As many as one in four adults have a disability and up to one in 12 have addiction to alcohol or drugs yet little is known about their intersection or more broadly about substance use among people with disabilities. The complex interplay of social, economic, and health factors associated with disability are also risk factors for substance use, unhealthy use, and addiction. Disability stigma and stereotypes are common around substance use by disabled people and their ability to engage in treatment and recovery. Many people with disabilities abstain from alcohol and drug use yet rates of addiction are higher across most disabilities than among the nondisabled, with the notable exception of alcohol. Despite this, disabled people are less likely to enter addiction treatment than nondisabled people. Stigma and other barriers to treatment are common for all people with substance use problems and more so for people with disabilities. Attitudes, discriminatory policies or practices, communications, and physical constraints reflect ableism and affect the ability of people with disabilities to enter addiction treatment. Once treatment is initiated, success can be maximized by meeting specific disability-related needs. For people with physical and sensory disabilities, if physical accessibility and communications accommodations are met, success in addiction treatment presumably should parallel that of people without these disabilities. For people with intellectual, developmental, and cognitive disabilities, success may require additional adaptations. Promising approaches exist but cross-systems training and collaboration is essential. By reducing ableism, misbeliefs, and stigma and offering flexible treatment approaches along with the required accommodations, people with disabilities who also have addiction should be supported in reducing unhealthy substance use and in their paths to recovery.
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Rayna Sage, Genna Mashinchi, and Craig Ravesloot
The ways in which disability impacts people and their health in rural places are a result of the interaction between the person and the rural environment in which they live. Disability is defined as ongoing difficulties engaging in daily activities and social roles due to physical or mental conditions. The United Nations Convention on the Rights of People with Disabilities (UN-CRPD) implemented policy in 2008 that recognized that disabled people are worthy of autonomy and dignity. The social and physical environment are constructed in ableist ways that make it difficult for people with disabilities to realize their independence and this is particularly true in many rural places. Person–environment fit and urbanormativity (the favoring of urban spaces at the expense of rural ones) are important concepts in understanding the experiences of rural disabled people. There is little existing research regarding the epidemiology of disability and rural health, but rural people report higher and earlier rates of disability than urban people and rural places have higher rates of older adults with higher rates of disability. Furthermore, rural people with disabilities experience various secondary health conditions and higher rates of mortality compared to urban people with disabilties. The lack of access to health care and advocacy help explain some of the differences in health outcomes when comparing rural and urban people. The disability rights movement led to the creation of different types of advocacy and service organizations across the globe to address these disparities. An important way to improve the experiences and health of rural people with disabilities is to ensure they have access to quality and dependable in-home services and community-based rehabilitation, which currently tend to be under-funded with dramatic worker shortages in many rural places. A final promising approach to improving the health of rural disabled people is through evidence-based health promotion programming that targets early indicators of health problemsand recovery and health-sustaining efforts following a health problem.
Article
Gloria Krahn
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.
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Sandy Magaña, Nazanin Heydarian, and Sandra Vanegas
Compared to the general population, people with intellectual and developmental disabilities (IDD) face worse health outcomes, and outcomes are even worse for children and adults with IDD from minoritized populations. Examining the intersection of people with IDD from minoritized groups is critical to understanding appropriate policies and services that promote health among all people with IDD. People with IDD from minoritized racial and ethnic groups have greater exposure to detrimental social determinants of health, which leads to poor access to adequate healthcare and poor health outcomes. Policies that aim to improve health outcomes among people with IDD and that are related to their disability and appropriate accommodations are not enough. Policies need to address poverty in families, racism and discrimination, poor housing, and other social determinants that are more prevalent among minoritized populations.
Most research on racial and ethnic disparities among children and adults with IDD has been conducted in the United States. While there is emerging research globally on racial and ethnic disparities, there a paucity of this research in the field of IDD. Furthermore, there may be detrimental health effects for other minoritized groups, such as religious minorities, but research is lacking in this area. Clearly, more research on these intersections is needed in the global context.
Article
Emmanuelle Cambois, Géraldine Duthé, and France Meslé
In the known history of humanity, life expectancy scarcely exceeded 30 years, with half of newborns dying before age five, up to the 18th century. However, from the 18th century onward, major epidemics were combatted more efficiently, famines became less frequent, and life expectancy thus began to increase, first in Northwest Europe, then spreading to North America, Australia, Japan, and to the rest of Europe. The health transition reached Latin America, the rest of Asia, and Africa only in the 20th century.
In 2015–2020, worldwide life expectancy at birth reached 72.5 years. However, differences remained large between regions and countries. The Japanese experienced the highest level at 84.4 years, thanks to their increasingly effective noncommunicable disease (NCD) control and an especially dramatic decrease in cardiovascular mortality. On average, life expectancy was 80.9 years in high income countries, 71.4 in middle income countries and 63.4 in low income countries. It was only 60 years in sub-Saharan Africa, with some countries barely exceeding 50. High mortality countries suffer a heavy burden from both infectious and NCDs.
Due to increasing life expectancy, deaths shifting to older ages, and changing cause-of-death patterns, questions arise concerning the health of populations. The health expectancies made available mainly in high income countries are indicators that combine mortality and health data. Although it seems that severe disability has not increased in the early 21st century, the results for less severe disabilities diverge from one country to the other. Along their longer life expectancy, females live more unhealthy years than males; in some countries they even live fewer healthy years than males.
The future may see life expectancy surpassing 90 years in the most advanced countries, likely before the end of the 21st century. However, achieving this requires that humanity face major challenges, especially in overcoming infectious diseases, impeding NCDs, reducing poverty and socioeconomic inequalities, and combating the deterioration of our environment.
