Integrating the Social and Political Dimensions of Disability Into Life Course Theory
Disabilities and the Life Course
ISBN: 978-1-80455-202-5, eISBN: 978-1-80455-201-8
ISSN: 1479-3547
Publication date: 31 July 2023
Abstract
The purpose of this chapter is to reconsider the five principles of Elder et al.'s (2003) life course theory while centering disability status as an axis of inequality. We use existing research from the fields of the sociology of disability, disability studies, and aging and the life course to reflect on ways in which each life course principle can better attend to the experiences of disabled people. We start with the principle of time and place and discuss how cohort and period effects facilitate a deeper understanding of disabled people's experiences historically. Next, we analyze the principle of timing with an emphasis on cumulative dis/advantage to establish how disability status is an axis of inequality that contributes to the accumulation of social disadvantage and intersects with other axes of inequality (e.g., race, class, and gender). Then, we discuss the two principles of agency and linked lives and employ the concept of “bounded agency” to describe how ableism limits the agency of disabled people. Finally, we examine the principle of life-span development and discuss how adaptation and resilience are contextual and an ordinary part of human experiences. We conclude by offering recommendations for both life course and disability scholars to consider in hopes of broadening our theoretical and empirical knowledge about the lives of disabled people at every stage of the life course and the mechanisms by which resources are stratified by disability and age.
Keywords
Citation
Latham-Mintus, K. and Landes, S.D. (2023), "Integrating the Social and Political Dimensions of Disability Into Life Course Theory", Dillaway, H.E., Shandra, C.L. and Bender, A.A. (Ed.) Disabilities and the Life Course (Research in Social Science and Disability, Vol. 14), Emerald Publishing Limited, Leeds, pp. 11-28. https://doi.org/10.1108/S1479-354720230000014002
Publisher
:Emerald Publishing Limited
Copyright © 2023 Kenzie Latham-Mintus and Scott D. Landes. Published under exclusive licence by Emerald Publishing Limited
Author Biographies
Kenzie Latham-Mintus, PhD, FGSA, is an Associate Professor of Sociology in the School of Liberal Arts at IUPUI. She received a PhD in Sociology from the University of Florida in 2011. Her research interests include health and aging with an emphasis on disability as well as chronic illness. Much of Latham-Mintus' research focuses on identifying and understanding health disparities among older adults. In 2017, she was selected as a Fellow of The Gerontological Society of America (GSA). Dr. Latham-Mintus serves on several journal editorial boards including The Journals of Gerontology, Jounal of Social Sciences, and Journal of Aging and Health.
Scott D. Landes, PhD, is an Associate Professor of Sociology and Faculty Associate in the Aging Studies Institute. He received a PhD in Sociology from the University of Florida in 2014. Informed by his interest in medical sociology, aging and the life course, and disability theory, the majority of his research focuses on health and mortality trends across the life course for disabled people, and for veterans. His other primary research focus addresses the intersections of disability and social theory.
Disability is a common and consequential part of the life course that is, perplexingly, often ignored by life course scholars. Increases in life expectancy over the past century mean longer lives, but typically with chronic health conditions and/or disability (Engelman & Jackson, 2019; Lee et al., 2020). According to the Centers for Disease Control and Prevention (CDC, 2020), 26% of adults in the United States, or 61 million people in the United States, are disabled, with variation in prevalence by age group, sex, and race-ethnicity. In wealthy nations, social, economic, and medical advancements have resulted in extended life expectancies for people with intellectual or developmental disabilities, with the average age at death reaching the 60s for people with intellectual disability, and mid- to late 50s for people with Down syndrome or cerebral palsy (Landes et al., 2021). Thus, the evidence is clear that a growing share of individuals can anticipate aging with disability. Yet, as an area of inquiry, disability across the life course remains severely underdeveloped. This is puzzling as disability experiences are punctuated by age-related variation and inequalities, topics of research typically addressed by life course scholars. The purpose of this chapter is to address this gap by reimaging existing life course theory through a disability lens.
Disability in old age is a common experience, yet the experiences of those who acquire impairment in later life compared with those who were born with or developed disability in early life are quite distinct (Bogart et al., 2018). Disability status is an axis of inequality, similar to other axes such as race, class, and gender that reflect larger systems of oppression (Mauldin & Brown, 2021; Shandra, 2018). Disabled people experience discrimination in all domains of life; employment, college graduation, and marriage rates are all lower for people with disabilities (MacInnes, 2011; Maroto et al., 2019; Shandra, 2018). Because individual resources (e.g., power, wealth, and opportunities) are stratified by disability, people who are born with a disability or acquire disability early in life experience more cumulative disadvantage over their lifetime (Clarke & Latham, 2014; Shuey & Willson, 2022; Verbrugge et al., 2017).
Aging scholars frequently examine these phenomena but do so without considering how disability experiences vary across the life course. Furthermore, aging and disability scholars often view disability through different conceptual frameworks. Gerontologists and aging scholars typically apply a medicalized model of disability that conceptualizes disability as part of the normative aging process, ignoring the social and political dimensions of disability, while disability scholars – who emphasize the political and social dimensions of disability – often neglect the role of timing and the experiences of people who acquire disability in old age (Kahana & Kahana, 2017). A lack of dialogue among these scholars leads to an incomplete picture of disability across the life course.
We argue that one reason for this lack of integration is that life course scholarship has ignored disability as an axis of inequality, and therefore, neglected to account for the social and political dimensions of disability within the major theories and frameworks, despite its centrality to key life course concepts. Therefore, the purpose of this chapter is to reexamine the five principles of life course theory (see Elder et al., 2003) while centering disability status as an axis of inequality. To do so, we use existing research from the fields of the sociology of disability, disability studies, and aging and the life course to reflect on ways in which each life course principle can better attend to the experiences of disabled people. We believe that this chapter provides a roadmap for scholars to better account for disability across the life course. In addition, it provides a needed critique of traditional interpretations of life course principles through the lens of disability, thereby improving dialogue between aging/life course and disability scholars.
An Overview of Life Course Theory
After four decades of work in the area, Elder (1998) first outlined the four principles (a few years later, a fifth principle was added) of life course theory in the late 1990s. Broadly, life course theory focuses on understanding the interrelationships among sociohistorical structure and change, time, and human agency (Elder, 1994, 1998). Elder (1998) viewed life pathways as one of the more intriguing areas of study – noting that life transitions (e.g., entering school, birth of a first child, marriage) were important aspects of social trajectories. Elder's (1998) first two principles considered the role of time including historical time and place and timing in one's life. These principles underscore that life paths are shaped by sociohistorical forces and when someone experiences a life transition matters because the timing influences subsequent transitions and can have long-term consequences (Elder, 1998). The additional two original principles focused on linked lives and agency. Elder (1998) states that individuals live interdependent lives and that choices and actions occur within the “opportunities and constraints of history and social circumstances” (p. 4). In 2003, Elder and colleagues added a fifth principle: the principle of life-span development. It states that “[h]uman development and aging are lifelong processes” (Elder et al., 2003). Taken together, over the past two decades, these principles have laid the foundation for much of contemporary life course scholarship; however, the word disability does not appear in Elder's 1998 or 2003 publication. Looking toward the future of disability and life course scholarship, we reexamine the five principles of life course theory centering disability and make recommendations, including the need for better disability-related measurement and data availability, so that scholars from both fields can expand our collective knowledge about disability across the life course.
Time, Place, and Timing
The Principle of Time and Place
The Principle of Time and Place: The life course of individuals is embedded and shaped by the historical times and places they experience over their lifetime.
(Elder et al., 2003, p. 12)
According to Elder et al. (2003), “[t]ime operates at both a sociohistorical and personal level” (p. 8). The first principle we discuss focuses on the sociohistorical aspects of time. Elder's (Elder et al., 2003) principle of time and place underscores that individual lives are “shaped” by historical and geographic context. Specifically, Elder et al. (2003) use the concepts of cohort and period effects to describe how historical context influences life pathways; cohort effects represent the unique sociohistorical conditions that people experience based on when they are born, whereas period effects represent the extent to which social changes influence current and successive cohorts in similar ways (Elder et al., 2003). This aspect of the life course has been overlooked in much of the research focused on disability. To illustrate, the most used frameworks for understanding the disability experience within research literature over the past 50 years have been Nagi's Disablement Model (1965), Verbrugge's and Jette's Disablement Process (1994), and the World Health Organization's International Classification of Functioning, Disability, and Death (ICF) (2001), which emphasize individual pathways from pathology to disability with little to no attention paid to sociohistorical and geographical context.
To varying degrees, each of these frameworks attempts to attend to the ways in which corporeal and environmental factors (often combining medical and social models of disability) impact functioning for disabled people. Beyond concerns with the way these frameworks separate the disabled person's bodily experience from the conceptualization of the disability (Barnes, 2016; Shakespeare & Watson, 2010) and prioritize pathology as opposed to self-identification as the starting point for disability, we want to underscore the lack of attention to time and place – specifically related to historical period, geographical location, and birth cohort differences in the disability experience (Glenn, 2004).
This lack of attention to time and place shrouds the heterogeneity present within the disability experience. Scholars should consider possible cohort (variation in experiences based on birth cohort) and period effects (variation in experience based on social and historical conditions) on disability experience (Yang, 2011). In the early part of the twentieth century, the US public policy severely marginalized and abused disabled people through specific policies around institutionalization and forced sterilization, as well as other state and local policies (Carey, 2010; Kristiansen & Bigby, 2005; Nielsen, 2012; Trent, 1994). In addition, even after the deinstitutionalization movement, prior to the passage of the Omnibus Budget Reconciliation Act (OBRA) to reform nursing homes, many disabled people were moved directly and without proper consent from state institutions to nursing homes (Kristiansen & Bigby, 2005; Landes & Lillaney, 2019). Although the scale and severity of these abuses have generally decreased over time, for many countries including the United States, the institutionalization of disabled people in either large- or small-scale residential settings (Rosenthal, 2021) and/or forced sterilization via court order continues today (Griffin, 2018; Rowlands & Amy, 2019).
Other social movements and resulting policies enacted in the latter part of the twentieth century had more beneficial effects (Carey, 2010; Heller & Parker Harris, 2012; Nielsen, 2012; Scotch, 1989; Trent, 1994). The Disability Rights Movement (DRM) which started in the early 1980s advocated for policy changes that protected the rights of disabled people and were at least partially addressed in legislation (Pettinicchio, 2020). The Individuals with Disabilities Education Act (IDEA) enacted in 1975 increased disabled students' access to a free and appropriate education. The Americans with Disabilities Act (ADA) enacted in 1990 prohibited discrimination against disabled people in employment, education, and transportation, as well as other public and private places open to the general public. The Convention on the Rights of Persons with Disabilities (CRPD) which was first adopted by the United Nations in 2006 to promote the rights of disabled people around the globe has been formally ratified by 184 countries to date. The uneven expansion of disability rights across time and nations emphasizes the central premise of this principle – individuals' lives need to be understood within the context of historical time and place.
Each of these policies, for good or ill, had immediate and long-term impacts on the psychological and physical well-being of disabled people. Thus, it is important for researchers to not only understand the history of disability (Nielsen, 2012) but also to consider how each policy may result in cohort and/or period effects that differentiate outcomes among disabled individuals. The recent conceptual work on the “life course cube” by Bernardi et al. (2018) offers a possible pathway forward by positing a time axis as a foundational aspect of life course studies that incorporates life course trajectories and changes in societal structures. We think this may be a good starting point for conceptually understanding how period and cohort effects (along with age effects or individual change over time) are at play in the lives of disabled people. Although demographic research into age–period–cohort trends in disability is well established (see Beller & Epping, 2021), we are only aware of one study that accounts for policy-change-related cohort effects in the disability experience. Landes (2017) demonstrated it is important to account for cohort variation in access to public education when examining the effects of education on mortality outcomes among adults with intellectual and developmental disability. It will be important for future studies to expand this effort and more clearly attend to the ways in which time specified by age, period, and cohort effects factor into outcomes for disabled people.
The Principle of Timing
The Principle of Timing: The developmental antecedents and consequences of life transitions, events, and behavioral patterns vary according to their timing in a person's life.
(Elder et al., 2003, p. 12)
The next principle we discuss addresses time at the individual level, which includes age effects. According to Elder et al. (2003), important life events or transitions can take on different meanings for individuals depending on life stage. It is our goal to build upon this principle by examining how disability shapes life transitions, social trajectories, cumulative dis/advantage, and expand upon the relationship between life transitions and identity formation. When discussing life transitions, Elder et al. (2003) provide the example of early transitions (also known as “off time” or nonnormative transitions) into adult statuses, where leaving one's parental home or having children at young ages is associated with poorer mental health. They connect the different timing (and pile up) of life transitions to processes related to cumulative advantages and disadvantages (Elder et al., 2003).
However, life transitions, and the related concept of cumulative dis/advantage, are intimately tied to disability experiences. For example, disabled adolescents and young adults often experience delayed or restricted life transitions due to fewer opportunities (e.g., inaccessible education and work environments) or overprotective guardians (Fyson & Kitson, 2007). To illustrate, Howland and Rintala (2001) interviewed women with physical disabilities about their dating experiences; a major theme was identified as “delayed development of dating behaviors” (p. 47). The women interviewed discussed a lack of perceived romantic interest from peers, physical barriers to dating, inexperience with age-appropriate social skills, and interfering parents as reasons for entering romantic relationships at older ages than their able-bodied peers (Howland & Rintala, 2001). These off-time transitions may contribute to the lower rates of marriage among disabled adults (MacInnes, 2011).
Social trajectories are composed of multiple life transitions and form “long-term patterns of stability and change…that can be reliably differentiated from alternate patterns” (George, 1993). In general, the social trajectories of disabled adults vary in terms of education, work, and family formation, compared with abled adults, which were the foci of Elder's early work. Disabled Americans have fewer opportunities for normative life transitions and experience more off-time transitions, which influence subsequent transitions (e.g., barriers to going and graduating college limit work opportunities) (Stevens, 2019). These differing social trajectories are due to structural ableism – the systemic oppression of disabled people that occurs through social/cultural prejudice and social marginalization (Barnes, 2016; Bogart & Dunn, 2019) – and often reflect unequal life chances and cumulative dis/advantage.
Because disability is an axis of inequality, the timing of disability onset and duration with disability is related to cumulative dis/advantage. While Elder et al. (2003) view cumulative disadvantage as a key concept within life course theory, we continue in the tradition of other life course scholars (see Dannefer, 2003; Gee et al., 2019; Lynch & Brown, 2011; O'Rand, 1996) who have better accounted for social stratification and systems of oppression such as classism, racism, and sexism to understand intracohort inequality. We extend this line of inquiry by including ableism into cumulative dis/advantage processes and integrating the timing of disability, whereas racism and sexism (and arguably classism) are typically associated with more static statuses such as race, ethnicity, and gender, disability is a more dynamic status – making the timing of when someone acquires a disability status an important consideration.
For those born with disability, experiences of discrimination in education and employment domains limit lifetime earnings (Stark & Noel, 2015; Zarifa et al., 2015) and contribute to high rates of poverty among disabled Americans (Maroto et al., 2019). Moreover, disabled adults with a college education face significant barriers to labor force participation that translates into lower earnings despite their high levels of educational attainment (Gillies, 2012; Zarifa et al., 2015). In fact, regardless of education and training, disabled adults are less likely to be hired (Ameri et al., 2018; Bjørnshagen & Ugreninov, 2021), more likely to be fired (Baldwin & Schumacher, 2002), less likely to receive a promotion (Maroto & Pettinicchio, 2014), more likely to receive lower pay (Schur et al., 2017), and less likely to be satisfied with their job (Brooks, 2019), relative to abled adults. The longer an individual has a work-limiting condition/impairment, the larger the impact on their career trajectory and socioeconomic standing (Shuey & Willson, 2022), and, eventually, retirement savings and income. Each missed opportunity for career advancement leads to widening inequality for people aging with disability. For those who cannot participate in the labor force, the fragmented and underfunded entitlement programs aimed at preventing poverty among disabled Americans typically fail to do so (Ball et al., 2006; She & Livermore, 2009; Stapleton et al., 2006).
Across multiple life domains, there is compelling evidence of social disadvantage among disabled Americans. Yet, instead of understanding disability as an axis of inequality, life course researchers have often conceptualized disability as a medical problem that is the result of social and economic inequality across the life course. This is an important distinction. Previous research has documented that indicators of social disadvantage (e.g., childhood conditions or belonging to historically marginalized or minoritized groups) predict disability trajectories in mid- and later life (see Bowen & González, 2010; Shuey & Willson, 2008). Although this line of inquiry highlights that cumulative disadvantage is associated with increased risk of disability, it fails to account for disability, itself, in the accumulation of dis/advantages. As Shandra (2018) notes, disability is both the cause and consequence of social disadvantage. There is a wealth of empirical data demonstrating that historically marginalized and minoritized individuals are more likely to be disabled at every stage of the life course. However, intersectional approaches have been particularly useful in understanding how disability is an axis of inequality that intersects with other systems of oppression – leading to deeply unequal life chances for disabled women, Black, Indigenous, people of color, and LGBTQ persons (see Brown & Moloney, 2019; Frederick & Shifrer, 2019; Maroto et al., 2019).
Finally, we want to highlight an area where disability studies can enhance our knowledge about the importance of timing, specifically for identity formation. Although Elder et al. (2003) briefly mention identity in relation to life transitions, we believe that more attention should be given to the subject within life course theory. Previous research underscores that the development of a disability identity (i.e., a self-concept that emphasizes disability pride) is associated with higher ratings of life satisfaction, more self-esteem, and self-efficacy among disabled people (Bogart et al., 2018; Bogart & Nario-Redmond, 2019). However, the development of a disability identity is intimately tied to age of disability onset (Darling & Heckert, 2010). Those born with disability are more likely to form a disability identity and reap the socioemotional benefits across the life course. Older adults who acquired disability in later life are much more likely to reject a disability identity and endorse the medical model of disability (Darling & Heckert, 2010). A disability identity can help resist stigma and serve as an important socioemotional resource for disabled individuals who experience nonnormative life transitions – ultimately, shaping experiences with cumulative dis/advantage and social trajectories more generally.
Agency, Linked Lives, and Life-Span Development
The Principles of Agency and Linked Lives
The Principle of Agency: Individuals construct their own life course through the choices and actions they take within the opportunities and constraints of history and social circumstance.
The Principle of Linked Lives: Lives are lived interdependently, and sociohistorical influences are expressed through this network of shared relationships.
(Elder et al., 2003, pp. 11–13)
We purposefully discuss the two principles of agency and linked lives. Although this decision prevents a fuller discussion of some important topics related to linked lives, such as care partners and social supports, we think it necessary to underscore the intimate connection between the two – a tenet stressed in disability scholarship but to date not readily recognized by life course scholars. Human agency, defined as the ability to act intentionally in a way that helps determine future outcomes, is commonly conceptualized as an individual characteristic (Giddens, 1984; Sztompka, 1994). Elder's early work, as well as later work, with Hitlin takes a similar view, defining human agency as individual-level characteristics (Elder, 1994; Hitlin & Elder, 2007a, 2007b). Hitlin and Elder (2007a) adopt the view of Evans (2002) that agency can be “bounded” by social structure, meaning levels of agency are associated with levels of privilege in the social structure with individuals with less privilege having more “bounded” or lower levels of agency. Especially in light of the earlier discussion of the negative effects of policies such as forced sterilization or institutionalization (Nielsen, 2012; Trent, 1994), it is important to realize that many disabled people have experienced or continue to experience severe structural limitations on their agency that can have immediate and long-term effects on their ability to engage in agentic behavior (Landes & Settersten, 2019). In contrast, more recent public policies that increase accessibility to socioeconomic resources and fuller participation in society likely increase or augment agency in the lives of disabled people. Other research highlights how disabled individuals employ “strategies of resistance that embody individual and collective struggles for recognition” within ableist societies (Loja et al., 2013, p. 200).
Yet, it is important for life course scholars to recognize that the boundedness of human agency among disabled people is not limited to the most severe social policies such as institutionalization. Instead, more common processes such as those specified for applying for and continuing to receive support for a disability can also bound agency. As Herd and Moynihan (2019) carefully detail, many of these processes are layered with excess levels of administrative burden in the forms of bureaucracy, regulations, and endless paperwork that can further restrict agency by either delaying needed care or preventing the ability to engage in agentic decision or exercise their fundamental rights. For instance, Herd and Moynihan (2019) demonstrate that the application and approval processes required to receive disability-related benefits are often more burdensome than for nondisability-related benefits such as retirement. In instances when the disabled person and their family need sought-after supports to fully participate in their lives, the administrative burden present within the care support can delay receipt of care and reduce the agency of all involved.
Even in instances when support services are secured, the guidelines put in place regarding continued receipt of services can also bound agency. Grossman (2018) highlights how interstate differences in Medicaid programs designed to provide personal care attendant (PCA) services for physically disabled people limit cross-state moves. In essence, receipt of these services in one state does not guarantee receipt of the same services when moving to a different state. As a result, disabled individuals reliant on these services experience a form of “intrastate confinement,” which reflects a severe instance of the bounding of human agency.
We think it imperative for life course scholars to carefully attend to the multiplicity of ways in which the human agency of disabled people is bound by the social structures of policies and their related administrative burden. Yet, it is also important to recognize that this is not the full extent of the barriers that exist for disabled people with regard to exercising their agency. Attention is also needed to the ways in which linked lives are intimately connected with human agency. According to Elder et al. (2003), the principle of linked lives emphasizes that all lives are interdependent within networks of interpersonal relationships. As Landes and Settersten (2019) explain, linked lives can also bind human agency. In instances where individuals are dependent on support or care from others – a characteristic of the human condition that is universal, but more obvious in the lives of many disabled people – the ability to engage in agentic activity is directly related to the quality of these relationships (Miles, 2019). Relationships that are not supportive, or in the worst instances are abusive, work to bound agency. In contrast, relationships that are supportive can help to maximize agency. In this vein, recent works by life course scholars such as Harrington Meyer and Abdul-Malak (2020) on the role of grandparents in the lives of disabled children, Mollborn et al. (2021) on the influence of parents on children's health behaviors, as well as by disability scholars such as Caldwell (2014) on how to better incorporate interdependence into research models provide insight into how to better account for the “inseparability” of agency and linked lives.
Finally, life course scholars should become more attuned to the ways in which both social structures and interpersonal relationships are often imbued with ableism. In sum, ableism is a preference for the nondisabled body and mind that is embedded within cultural values, interpersonal relationships, and social structures (Barnes, 2016; Wolbring, 2008). Similar to the argument of Mauldin and Brown (2021) regarding the need for medical sociology to recognize the influence of ableism within this field, we think it is important for life course scholars to examine the ways in which ableism bounds the agency of disabled people. While this may occur in multiple ways in the lives we study, we must also be aware that ableism can bind agency via the decisions we make regarding whom we do/do not research, how we measure social statuses such as disability, as well as whether we adequately account for critical aspects of heterogeneity within the disability experience.
The Principle of Life-Span Development
The Principle of Life-Span Development: Human development and aging are lifelong processes.
(Elder et al., 2003, p. 11)
The final principle that we consider is the principle of life-span development. Elder et al. (2003) recognize that humans experience biological, psychological, and social changes throughout their lives. This principle underscores that humans adapt to changing environments and challenges at every stage of the life course. Although human development captures a wide array of human behaviors and experiences, we address this principle by examining adaptation and resilience but highlight important critiques of how these concepts have historically been applied to disability experiences (Hutcheon & Lashewicz, 2014). Drawing from Ungar's (2004) and Hutcheon and Lashewicz's (2014) work, we employ a constructivist definition of resilience. Ungar (2004) states that resilience is the result of “negotiations between individuals and their environments for the resources to define themselves as healthy amidst conditions collectively viewed as adverse” (p. 342).
Adaptation and resilience are well represented in the aging with disability literature. Most people will experience age-related declines in function (e.g., vision, hearing, mobility, and/or cognition) (Deeg, 2005). Although this deficit view of aging is often overstated and not equally weighed with considerations of psychosocial well-being in later life (Rybarczyk et al., 2012), changes to function or physical capacity are to be expected with advancing ages. Previous research documents that onset of disability in midlife often results in a temporary dip in life satisfaction, but, for most, life satisfaction returns to similar levels prior to onset after a period of adjustment (Pagán-Rodríguez, 2010). However, adapting to these changes may be more or less difficult depending on one's past experiences, individual resources, and the environments in which one lives.
Prior research reveals high levels of perceived resilience among older adults aging with disability or chronic illness (Rybarczyk et al., 2012; Silverman et al., 2017). In focus groups of older adults aging with disability, Molton and Yorkston (2017) found that many participants framed “successful aging” as being flexible and adaptable; resilience meant “an openness to selection, optimization, and compensation and to changes brought about by the disability condition” (p. 296). Flexibility and openness to doing things differently reflects a more subjective definition of resilience, which have been underscored in the disability studies literature. Equally, disability scholars have levied important critiques against applications of the concept of resilience that reaffirm positivistic and ableistic views (Hutcheon & Lashewicz, 2014). For example, Hutcheon and Lashewicz (2014) argue that psychological and ecological applications of resilience are too prescriptive with an emphasis on independence that often excludes the interdependence that is part of the lived fabric of the lives of disabled people (we would argue interdependence is part of the lives of all people; see Landes & Settersten, 2019), and they propose that resilience is best “understood as contextual, subjective, and part of a meaning-making process” (p. 1392).
Like Hutcheon and Lashewicz (2014), we argue that resilience is ordinary and, by extension, adaptation, in all its forms, is part of the human experience. However, this does not mean that the role of the environment, including physical, social, attitudinal, and policy environments, should be overlooked. To illustrate, Silverman et al. (2017) conducted focus groups with middle-aged persons with multiple sclerosis. Participants identified important barriers of resilience such as social stigma, social limitations, fatigue, and burnout (Silverman et al., 2017). Inaccessible environments restrict opportunities and exclude disabled people (Latham-Mintus & Cordon, 2021). As gerontological work highlights, environments can be too demanding (e.g., inaccessible homes, buildings, and communities), but also not demanding enough (e.g., infantilizing caregiving arrangements) (Kahana et al., 1988). If resilience is an extension of adapting to one's environments, then it is important to emphasize that there are some environments that people cannot adapt to – they are simply too inhospitable. Yet, those environments are modifiable. Because resilience is contextual, resilience is not just the product of the person but also person–environment fit (Lai & Szatmari, 2019).
Taken together, the current literature not only highlights the potential for resilience and adaptation among people aging with disability but also demonstrates the potential for past experiences, social relationships, and structural factors to limit (or enhance) experiences of resilience. This principle highlights that human development does not stop in young adulthood, which is often overlooked by researchers. However, we argue, alongside Hutcheon and Lashewicz (2014), that resilience and adaption should be viewed as normative, subjective, and contextual and also highlight the need for more supportive, accessible environments that increase person-environment fit.
Discussion
As illustrated by our discussion, there is much work to do for life course scholars regarding their conceptualization and examination of disability. Although we included many starting points throughout our discussion, we want to focus attention at this point in the chapter on one specific change that we think is imperative for moving forward: measurement of disability status and timing in surveys. As Elder (1998) notes, the principles of life course theory have “empirical origins” stemming from access to longitudinal studies of children, which highlight the mutually reinforcing relationship between theory and data. Our intention here is to underscore a fundamental problem that must be addressed before life course scholarship can move forward regarding any life course principle. Accordingly, how disability is measured in national surveys influences our (lack of) understanding of the disability experience across the life course.
In large part, national surveys (e.g., American Community Survey (ACS) and National Health and Interview Survey (NHIS)) in the United States currently use disability questions based upon suggestions of the Washington Group on Disability Statistics (Centers for Disease Control, 2018). Although we agree it is beneficial to standardize disability questions across national surveys, it is important to recognize that the Washington Group questions do not sufficiently: (1) attend to the heterogeneity in cognitive disability status – the use of one cognitive disability question does not allow differentiation between very different disability statuses such as intellectual and developmental disability, traumatic brain injury (TBI), Alzheimer's disease, etc. (Havercamp et al., 2019; Krahn, 2019) or (2) include mental health disability status (Madans & Loeb, 2013).
Although problematic simply due to the inability of these questions to fully capture the breadth of disability experience, it is important to understand that these deficiencies in the survey questions are life course issues. Differentiating between varying cognitive disabilities also relates to timing, as disabilities such as intellectual and developmental disability are lifelong and diagnosed during childhood, whereas disabilities such as TBI can occur at any stage of the life course and others often occur in later life (e.g., Alzheimer's disease). Mental health disabilities also matter with regard to development across the life course as well as regarding timing of onset and effect on subsequent trajectories (Bültmann et al., 2020; Clarke et al., 2011; George, 2007). In addition, the timing of major life events and transitions and associated resource availability has been connected to mental health outcomes (Bültmann et al., 2020; Wheaton & Clarke, 2003). Inattention to these important differences severely curtails our ability to better understand variation among people with these disabilities.
Similarly, there is an important heterogeneity among those who have acquired physical disability at different stages of the life course. Based on the principle of timing, we would anticipate that someone who acquires physical disability in early midlife versus in old age would accumulate more social disadvantage. However, there is a dearth of empirical data testing this hypothesis. We believe that this lack of research, in part, stems from limitations in our nationally representative surveys of older adults. For example, the Health and Retirement Study (HRS) has measures of childhood disability and childhood conditions and multiple contemporaneous measures of disability at ages 51 and older. However, information about the timing of onset of disability between ages 19–50 is more limited. Although researchers could construct an approximate date of onset by using the year of diagnosis question for specific health conditions or first year of impairment questions (Putnam et al., 2016), this is less than ideal as it does not reflect the true complexity of disability experiences, and these measures require hefty data management. Yet, the HRS is the only nationally representative, longitudinal survey of older adults that has some information about year or age of onset for health conditions, functional limitations, and work disability (Putnam et al., 2016). We believe that with more comprehensive and readily available measures (e.g., range of disability types, asked of all respondents, no elaborate skip patterns, etc.) across popular datasets, more researchers would investigate the role of time and timing of disability experiences.
It is important to note that addressing existing problems with the measurement of disability in national surveys is a baseline remedy. While necessary, it is only a first step. We would argue that beyond the need to address foundational issues regarding the time and timing of disabilities and impairments (e.g., year of onset, age of onset, and duration), it will also be important to develop measures that better capture the rich heterogeneity of disability experiences across the life course. Though space does not permit full development of these measures, at the least, life course research would benefit from high-quality measures of disability-related discrimination, experiences with structural barriers such as administrative burden, interdependent social relationships that include but also extend beyond close family, and contextual measures.
Conclusion
The purpose of this chapter was to revisit the five principles of life course theory (Elder et al., 2003) while centering disability as an axis of inequality. Our goal was to highlight how disability and life course scholars could benefit from an integration of social and political dimensions of disability into life course theory. Using the concepts of period and cohort effects, we demonstrated that disability experiences are highly contingent on sociohistorical context. We also documented how disability is related to life transitions, trajectories, and processes related to cumulative dis/advantage. We discussed the need to understand bounded agency in the context of ableism as well as linked lives. Finally, we argued that adaptation, as part of life-span development, was a lifelong process that was inherently ordinary, subjective, and contextual. Finally, we contend that, together with an underdeveloped theoretical framework, survey measurement has held back the extant literature. We hope that this chapter can provide a roadmap for life course and disability scholars by highlighting important gaps in the literature and expanding our understanding of the life course theory.
References
Ameri et al., 2018 Ameri, M. , Schur, L. , Adya, M. , Bentley, F. S. , McKay, P. , & Kruse, D. (2018). The disability employment puzzle: A field experiment on employer hiring behavior. ILR Review, 71(2), 329–364. https://doi.org/10.1177/0019793917717474
Baldwin and Schumacher, 2002 Baldwin, M. L. , & Schumacher, E. J. (2002). A note on job mobility among workers with disabilities. Industrial Relations: A Journal of Economy and Society, 41(3), 430–441.
Ball et al., 2006 Ball, P. , Morris, M. , Hartnette, J. , & Blanck, P. (2006). Breaking the cycle of poverty: Asset accumulation by people with disabilities. Disability Studies Quarterly, 26(1). https://doi.org/10.18061/dsq.v26i1.652
Barnes, 2016 Barnes, E. (2016). The minority body: A theory of disability. Oxford University Press.
Beller and Epping, 2021 Beller, J. , & Epping, J. (2021). Disability trends in Europe by age-period-cohort analysis: Increasing disability in younger cohorts. Disability and Health Journal, 14(1). https://doi.org/10.1016/j.dhjo.2020.100948
Bernardi et al., 2018 Bernardi, L. , Huinink, J. , & Settersten, R. A., Jr . (2018). The life course cube: A tool for studying lives. Advances in Life Course Research. https://doi.org/10.1016/j.alcr.2018.11.004
Bjø rnshagen and Ugreninov, 2021 Bjørnshagen, V. , & Ugreninov, E. (2021). Disability disadvantage: Experimental evidence of hiring discrimination against wheelchair users. European Sociological Review, 37(5), 818–833. https://doi.org/10.1093/esr/jcab004
Bogart and Dunn, 2019 Bogart, K. R. , & Dunn, D. S. (2019). Ableism special issue introduction. Journal of Social Issues, 75(3), 650–664. https://doi.org/10.1111/josi.12354
Bogart and Nario-Redmond, 2019 Bogart, K. R. , & Nario-Redmond, M. R. (2019). An exploration of disability self-categorization, identity, and pride. In D. S. Dunn (Ed.), Understanding the experience of disability: Perspectives from social and rehabilitation psychology (pp. 252–267). Oxford University Press.
Bogart et al., 2018 Bogart, K. R. , Rosa, N. M. , & Slepian, M. L. (2018). Born that way or became that way: Stigma toward congenital versus acquired disability. Group Processes & Intergroup Relations, 22(4), 594–612. https://doi.org/10.1177%2F1368430218757897
Bowen and Gonzá lez, 2010 Bowen, M. E. , & González, H. M. (2010). Childhood socioeconomic position and disability in later life: Results of the health and retirement study. American Journal of Public Health, 100(S1), S197–S203. https://doi.org/10.2105/AJPH.2009.160986
Brooks, 2019 Brooks, J. D. (2019). Just a little respect: Differences in job satisfaction among individuals with and without disabilities. Social Science Quarterly, 100(1), 379–388. https://doi.org/10.1111/ssqu.12543
Brown and Moloney, 2019 Brown, R. L. , & Moloney, M. E. (2019). Intersectionality, work, and well-being: The effects of gender and disability. Gender & Society, 33(1), 94–122. https://doi.org/10.1177/0891243218800636
Bü ltmann et al., 2020 Bültmann, U. , Arends, I. , Veldman, K. , McLeod, C. B. , van Zon, S. K. R. , & Amick, B. C., III . (2020). Investigating young adults' mental health and early working life trajectories from a life course perspective: The role of transitions. Journal of Epidemiology and Community Health, 74(2), 179. https://doi.org/10.1136/jech-2019-213245
Caldwell, 2014 Caldwell, K. (2014). Dyadic interviewing: A technique valuing interdependence in interviews with individuals with intellectual disabilities. Qualitative Research, 14(4), 488–507. https://doi.org/10.1177%2F1468794113490718
Carey, 2010 Carey, A. C. (2010). On the margins of citizenship: Intellectual disability and civil rights in twentieth-century America. Temple University Press.
CDC, 2020 CDC . (2020). Disability impacts all of us. Centers for Disease Control and Prevention. https://www.cdc.gov/ncbddd/disabilityandhealth/infographic-disability-impacts-all.html
Centers for Disease Control and Prevention, 2018 Centers for Disease Control and Prevention (CDC) . (2018). The measurement of disability: Recommendations for the 2010 round of censuses. https://www.cdc.gov/nchs/data/washington_group/recommendations_for_disability_measurement.pdf
Clarke and Latham, 2014 Clarke, P. , & Latham, K. (2014). Life course health and socioeconomic profiles of Americans aging with disability. Disability and Health Journal, 7(1, Suppl.), S15–S23. https://doi.org/10.1016/j.dhjo.2013.08.008
Clarke et al., 2011 Clarke, P. , Marshall, V. , House, J. , & Lantz, P. (2011). The social structuring of mental health over the adult life course: Advancing theory in the sociology of aging. Social Forces, 89(4), 1287–1313. https://doi.org/10.1093/sf/89.4.1287
Dannefer, 2003 Dannefer, D. (2003). Cumulative advantage/disadvantage and the life course: Cross-fertilizing age and social science theory. The Journals of Gerontology Series B: Psychological Sciences and Social Sciences, 58(6), S327–S337. https://doi.org/10.1093/geronb/58.6.S327
Darling and Heckert, 2010 Darling, R. B. , & Heckert, D. A. (2010). Orientations toward disability: Differences over the lifecourse. International Journal of Disability, Development and Education, 57(2), 131–143. https://doi.org/10.1080/10349121003750489
Deeg, 2005 Deeg, D. J. (2005). Longitudinal characterization of course types of functional limitations. Disability and Rehabilitation, 27(5), 253–261. https://doi.org/10.1080/09638280400006507
Elder et al., 2003 Elder, G. H. , Johnson, M. K. , & Crosnoe, R. (2003). The emergence and development of life course theory. In J. T. Mortimer & M. J. Shanahan (Eds.), Handbook of the life course (pp. 3–19). Springer. https://doi.org/10.1007/978-0-306-48247-2_1
Elder, 1994 Elder, G. H., Jr . (1994). Time, human agency, and social change: Perspectives on the life course. Social Psychology Quarterly, 57(1), 4–15. https://doi.org/10.2307/2786971
Elder, 1998 Elder, G. H., Jr . (1998). The life course as developmental theory. Child Development, 69(1), 1–12. https://doi.org/10.1111/j.1467-8624.1998.tb06128.x
Engelman and Jackson, 2019 Engelman, M. , & Jackson, H. (2019). Gradual change, homeostasis, and punctuated equilibrium: Reconsidering patterns of health in later life. Demography, 56(6), 2323–2347. https://doi.org/10.1007/s13524-019-00826-x
Evans, 2002 Evans, K. (2002). Taking control of their lives? Agency in young adult transitions in England and the New Germany. Journal of Youth Studies, 5(3), 245–269. https://doi.org/10.1080/1367626022000005965
Frederick and Shifrer, 2019 Frederick, A. , & Shifrer, D. (2019). Race and disability: From analogy to intersectionality. Sociology of Race and Ethnicity, 5(2), 200–214. https://doi.org/10.1177/2332649218783480
Fyson and Kitson, 2007 Fyson, R. , & Kitson, D. (2007). Independence or protection–does it have to be a choice? Reflections on the abuse of people with learning disabilities in Cornwall. Critical Social Policy, 27(3), 426–436. https://doi.org/10.1177%2F0261018307078850
Gee et al., 2019 Gee, G. C. , Hing, A. , Mohammed, S. , Tabor, D. C. , & Williams, D. R. (2019). Racism and the life course: Taking time seriously. American Journal of Public Health, 109(S1), S43–S47. https://ajph.aphapublications.org/doi/abs/10.2105/AJPH.2018.304766
George, 1993 George, L. K. (1993). Sociological perspectives on life transitions. Annual Review of Sociology, 19, 353–373. https://psycnet.apa.org/doi/10.1146/annurev.so.19.080193.002033
George, 2007 George, L. K. (2007). Life course perspectives on social factors and mental illness. In W. R. Avison , J. D. McLeod , & B. A. Pescosolido (Eds.), Mental health, social mirror (pp. 191–218). Springer.
Giddens, 1984 Giddens, A. (1984). The constitution of society: Outline of the theory of structuration. University of California Press.
Gillies, 2012 Gillies, J. (2012). University graduates with a disability: The transition to the workforce. Disability Studies Quarterly, 32(3). https://doi.org/10.18061/dsq.v32i3.3281
Glenn, 2004 Glenn, N. D. (2004). Distinguishing age, period, and cohort effects. In J. T. Mortimer & M. J. Shanahan (Eds.), Handbook of the life course (pp. 465–476). Springer.
Griffin, 2018 Griffin, D. (2018). Public health and sterilization of the mentally disabled: Under what circumstances should it be scrutinized versus granted by court order? Law School Student Scholarship, 938, 1–35.
Grossman, 2018 Grossman, B. R. (2018). Disability and corporeal (im)mobility: How interstate variation in Medicaid impacts the cross-state plans and pursuits of personal care attendant service users. Disability and Rehabilitation, 41(25), 1–11. https://doi.org/10.1080/09638288.2018.1483436
Havercamp et al., 2019 Havercamp, S. M. , Krahn, G. L. , Larson, S. A. , Fujiura, G. , Goode, T. D. , Kornblau, B. L. , & National Health Surveillance for IDD Workgroup . (2019). Identifying people with intellectual and developmental disabilities in national population surveys. Intellectual and Developmental Disabilities, 57(5), 376–389. https://doi.org/10.1352/1934-9556-57.5.376
Heller and Parker Harris, 2012 Heller, T. , & Parker Harris, S. (2012). Disability through the life course. Sage.
Herd and Moynihan, 2019 Herd, P. , & Moynihan, D. P. (2019). Administrative burden: Policymaking by other means. Russell Sage Foundation.
Hitlin and Elder, 2007a Hitlin, S. , & Elder, G. H., Jr . (2007a). Agency: An empirical model of an abstract concept. Advances in Life Course Research, 11, 33–67. https://doi.org/10.1016/S1040-2608(06)11002-3
Hitlin and Elder, 2007b Hitlin, S. , & Elder, G. H., Jr . (2007b). Time, self, and the curiously abstract concept of agency. Sociological Theory, 25(2), 170–191. https://doi.org/10.1111/j.1467-9558.2007.00303.x
Howland and Rintala, 2001 Howland, C. A. , & Rintala, D. H. (2001). Dating behaviors of women with physical disabilities. Sexuality and Disability, 19(1), 41–70. https://doi.org/10.1023/A:1010768804747
Hutcheon and Lashewicz, 2014 Hutcheon, E. , & Lashewicz, B. (2014). Theorizing resilience: Critiquing and unbounding a marginalizing concept. Disability & Society, 29(9), 1383–1397. https://doi.org/10.1080/09687599.2014.934954
Kahana and Kahana, 2017 Kahana, J. S. , & Kahana, E. (2017). Disability and aging: Learning from both to empower the lives of older adults. Lynne Rienner Publishers.
Kahana et al., 1988 Kahana, E. , Kahana, B. , & Riley, K. (1988). Chapter five person-environment transactions relevant to control and helplessness in institutional settings. In Advances in psychology (Vol. 57, pp. 121–153). https://doi.org/10.1016/S0166-4115(08)60979-6
Krahn, 2019 Krahn, G. L. (2019). Drilling deeper on the impact of the Affordable Care Act on disability-related health care access disparities. American Journal of Public Health, 109(7), 956–958. https://doi.org/10.2105/ajph.2019.305114
Kristiansen and Bigby, 2005 Kristiansen, K. , & Bigby, C. M. (2005). Deinstitutionalization and people with intellectual disabilities: In and out of institutions. Jessica Kingsley Publishers.
Lai and Szatmari, 2019 Lai, M. C. , & Szatmari, P. (2019). Resilience in autism: Research and practice prospects. Autism, 23(3), 539–541. https://doi.org/10.1177%2F1362361319842964
Landes, 2017 Landes, S. D. (2017). The association between education and mortality for adults with intellectual disability. Journal of Health and Social Behavior, 58(1), 70–85. https://doi.org/10.1177%2F0022146516683227
Landes and Lillaney, 2019 Landes, S. D. , & Lillaney, N. (2019). Trend change in the intellectual disability nursing home census from 1977 to 2004. American Journal on Intellectual and Developmental Disabilities, 124(5), 427–437. https://doi.org/10.1352/1944-7558-124.5.427
Landes et al., 2021 Landes, S. D. , McDonald, K. E. , Wilmoth, J. M. , & Carter Grosso, E. (2021). Evidence of continued reduction in the age-at-death disparity between adults with and without intellectual and/or developmental disabilities. Journal of Applied Research in Intellectual Disabilities, 34(3), 916–920. https://doi.org/10.1111/jar.12840
Landes and Settersten, 2019 Landes, S. D. , & Settersten, R. A. (2019). The inseparability of human agency and linked lives. Advances in Life Course Research, 42, 1–10. https://doi.org/10.1016/j.alcr.2019.100306
Latham-Mintus and Cordon, 2021 Latham-Mintus, K. , & Cordon, S. (2021). Contextualizing disability experiences: Understanding and measuring how the environment influences disability. In The Oxford handbook of the sociology of disability. https://doi.org/10.1093/oxfordhb/9780190093167.013.6
Lee et al., 2020 Lee, J. , Lau, S. , Meijer, E. , & Hu, P. (2020). Living longer, with or without disability? A global and longitudinal perspective. The Journals of Gerontology: Series A, 75(1), 162–167. https://doi.org/10.1093/gerona/glz007
Loja et al., 2013 Loja, E. , Costa, M. E. , Hughes, B. , & Menezes, I. (2013). Disability, embodiment and ableism: Stories of resistance. Disability & Society, 28(2), 190–203. https://doi.org/10.1080/09687599.2012.705057
Lynch and Brown, 2011 Lynch, S. M. , & Brown, J. S. (2011). Stratification and inequality over the life course. In Handbook of aging and the social sciences (pp. 105–117). Academic Press.
MacInnes, 2011 MacInnes, M. D. (2011). Altar-bound? The effect of disability on the hazard of entry into a first marriage. International Journal of Sociology, 41(1), 87–103. https://doi.org/10.2753/IJS0020-7659410105
Madans and Loeb, 2013 Madans, J. H. , & Loeb, M. (2013). Methods to improve international comparability of census and survey measures of disability. Disability and Rehabilitation, 35(13), 1070–1073. https://doi.org/10.3109/09638288.2012.720353
Maroto and Pettinicchio, 2014 Maroto, M. , & Pettinicchio, D. (2014). Disability, structural inequality, and work: The influence of occupational segregation on earnings for people with different disabilities. Research in Social Stratification and Mobility, 38, 76–92. https://doi.org/10.1016/j.rssm.2014.08.002
Maroto et al., 2019 Maroto, M. , Pettinicchio, D. , & Patterson, A. C. (2019). Hierarchies of categorical disadvantage: Economic insecurity at the intersection of disability, gender, and race. Gender & Society, 33(1), 64–93. https://doi.org/10.1177/0891243218794648
Mauldin and Brown, 2021 Mauldin, L. , & Brown, R. L. (2021). Missing pieces: Engaging sociology of disability in medical sociology. Journal of Health and Social Behavior, 62(4), 477–492. https://doi.org/10.1177%2F00221465211019358
Meyer and Abdul-Malak, 2020 Meyer M. H. , & Abdul-Malak Y. (Eds.). (2020). Grandparenting children with disabilities (pp. 1–26). Springer.
Miles, 2019 Miles, A. L. (2019). “Strong Black Women”: African American women with disabilities, intersecting identities, and inequality. Gender & Society, 33(1), 41–63. https://doi.org/10.1177/0891243218814820
Mollborn et al., 2021 Mollborn, S. , Lawrence, E. , & Krueger, P. M. (2021). Developing health lifestyle pathways and social inequalities across early childhood. Population Research and Policy Review, 40(5), 1085–1117. https://doi.org/10.1007/s11113-020-09615-6
Molton and Yorkston, 2017 Molton, I. R. , & Yorkston, K. M. (2017). Growing older with a physical disability: A special application of the successful aging paradigm. The Journals of Gerontology: Series B, 72(2), 290–299. https://doi.org/10.1093/geronb/gbw122
Nagi, 1965 Nagi, S. Z. (1965). Some conceptual issues in disability and rehabilitation. In M. Sussman (Ed.), Sociology and rehabilitation (pp. 100–113). American Sociological Association.
Nielsen, 2012 Nielsen, K. E. (2012). A disability history of the United States. Beacon Press.
O'Rand, 1996 O'Rand, A. M. (1996). The precious and the precocious: Understanding cumulative disadvantage and cumulative advantage over the life course. The Gerontologist, 36(2), 230–238. https://doi.org/10.1093/geront/36.2.230
Pagá n-Rodr í guez, 2010 Pagán-Rodríguez, R. (2010). Onset of disability and life satisfaction: Evidence from the German Socio-Economic Panel. The European Journal of Health Economics, 11(5), 471–485. https://doi.org/10.1007/s10198-009-0184-z
Pettinicchio, 2020 Pettinicchio, D. (2020). Politics of empowerment. Stanford University Press.
Putnam et al., 2016 Putnam, M. , Molton, I. R. , Truitt, A. R. , Smith, A. E. , & Jensen, M. P. (2016). Measures of aging with disability in US secondary data sets: Results of a scoping review. Disability and Health Journal, 9(1), 5–10. https://doi.org/10.1016/j.dhjo.2015.07.002
Rosenthal, 2021 Rosenthal, E. (2021). Residential care controversy: The promise of the UN Convention on the Rights of Persons with Disabilities to protect all children. The International Journal of Disability and Social Justice, 1(1), 95–117. http://doi.org/10.13169/intljofdissocjus.1.1.0095
Rowlands and Amy, 2019 Rowlands, S. , & Amy, J.-J. (2019). Sterilization of those with intellectual disability: Evolution from non-consensual interventions to strict safeguards. Journal of Intellectual Disabilities, 23(2), 233–249. https://doi.org/10.1177/1744629517747162
Rybarczyk et al., 2012 Rybarczyk, B. , Emery, E. E. , Guequierre, L. L. , Shamaskin, A. , & Behel, J. (2012). The role of resilience in chronic illness and disability in older adults. Annual Review of Gerontology & Geriatrics, 32(1), 173–187. https://doi.org/10.1891/0198-8794.32.173
Schur et al., 2017 Schur, L. , Han, K. , Kim, A. , Ameri, M. , Blanck, P. , & Kruse, D. (2017). Disability at work: A look back and forward. Journal of Occupational Rehabilitation, 27(4), 482–497.
Scotch, 1989 Scotch, R. K. (1989). Politics and policy in the history of the disability rights movement. The Milbank Quarterly, 67(Suppl. 2 Pt 2), 380–400. https://doi.org/10.2307/3350150
Shakespeare and Watson, 2010 Shakespeare, T. , & Watson, N. (2010). Beyond models: Understanding the complexity of disabled people's lives. In G. Scambler & S. Scambler (Eds.), New directions in the sociology of chronic and disabling conditions: Assaults on the lifeworld (pp. 57–76). Palgrave Macmillan.
Shandra, 2018 Shandra, C. L. (2018). Disability as inequality: Social disparities, health disparities, and participation in daily activities. Social Forces, 97(1), 157–192. https://doi.org/10.1093/sf/soy031
She and Livermore, 2009 She, P. , & Livermore, G. A. (2009). Long-term poverty and disability among working-age adults. Journal of Disability Policy Studies, 19(4), 244–256. https://doi.org/10.1177/1044207308314954
Shuey and Willson, 2008 Shuey, K. M. , & Willson, A. E. (2008). Cumulative disadvantage and Black-White disparities in life-course health trajectories. Research on Aging, 30(2), 200–225. https://doi.org/10.1177/0164027507311151
Shuey and Willson, 2022 Shuey, K. M. , & Willson, A. E. (2022). Cumulative disadvantage in employment: Disability over the life course and wealth inequality in later life. In R. L. Brown , M. Maroto , & D. Pettinicchio (Eds.), The Oxford handbook of the sociology of disability (online ed.). Oxford Academic. https://doi.org/10.1093/oxfordhb/9780190093167.013.25
Silverman et al., 2017 Silverman, A. M. , Verrall, A. M. , Alschuler, K. N. , Smith, A. E. , & Ehde, D. M. (2017). Bouncing back again, and again: A qualitative study of resilience in people with multiple sclerosis. Disability and Rehabilitation, 39(1), 14–22. https://doi.org/10.3109/09638288.2016.1138556
Stapleton et al., 2006 Stapleton, D. C. , O'day, B. L. , Livermore, G. A. , & Imparato, A. J. (2006). Dismantling the poverty trap: Disability policy for the twenty-first century. The Milbank Quarterly, 84(4), 701–732. https://doi.org/10.1111/j.1468-0009.2006.00465.x
Stark and Noel, 2015 Stark, P. , & Noel, A. M. (2015). Trends in high school dropout and completion rates in the United States: 1972–2012. Compendium Report. NCES 2015-015. National Center for Education Statistics. https://eric.ed.gov/?id=ED557576
Stevens, 2019 Stevens, J. D. (2019). Stuck in transition with you: Variable pathways to in(ter)dependence for emerging adult men with mobility impairments. In S. E. Green & D. R. Loseke (Eds.), New narratives of disability (Research in social science and disability (Vol. 11, pp. 169–184). Emerald Publishing Limited.
Sztompka, 1994 Sztompka, P. (1994). Evolving focus on human agency in contemporary social theory. In P. Sztompka (Ed.), Agency and structure: Reorienting social theory (pp. 25–60). Gordon and Breach.
Trent, 1994 Trent, J. W. (1994). Inventing the feeble mind: A history of mental retardation in the United States. University of California Press.
Ungar, 2004 Ungar, M. (2004). A constructionist discourse on resilience: Multiple contexts, multiple realities among at-risk children and youth. Youth & Society, 35(3), 341–365.
Verbrugge and Jette, 1994 Verbrugge, L. M. , & Jette, A. M. (1994). The disablement process. Social Science & Medicine, 38(1), 1–14. https://doi.org/10.1016/0277-9536(94)90294-1
Verbrugge et al., 2017 Verbrugge, L. M. , Latham, K. , & Clarke, P. J. (2017). Aging with disability for midlife and older adults. Research on Aging, 39(6), 741–777. https://doi.org/10.1177/0164027516681051
Wheaton and Clarke, 2003 Wheaton, B. , & Clarke, P. (2003). Space meets time: Integrating temporal and contextual influences on mental health in early adulthood. American Sociological Review, 680–706. https://doi.org/10.2307/1519758
Wolbring, 2008 Wolbring, G. (2008). The politics of ableism. Development, 51(2), 252–258. https://doi.org/10.1057/dev.2008.17
World Health Organization, 2001 World Health Organization (WHO) . (2001). International classification of functioning, disability, and health. World Health Organization.
Yang, 2011 Yang, Y. (2011). Aging, cohorts, and methods. In R. H. Binstock & L. G. George (Eds.), Handbook of aging and the social sciences (7th ed., pp. 17–30). Elsevier.
Zarifa et al., 2015 Zarifa, D. , Walters, D. , & Seward, B. (2015). The earnings and employment outcomes of the 2005 cohort of Canadian postsecondary graduates with disabilities. Canadian Review of Sociology/Revue canadienne de sociologie, 52(4), 343–376. https://doi.org/10.1111/cars.12082
- Prelims
- Introduction: Disabilities and the Life Course
- Integrating the Social and Political Dimensions of Disability Into Life Course Theory
- Multiple Sclerosis Diagnosis Pathways: An Intersectional Feminist Disability Life Course Perspective
- Disability, Gender, or Something Else? Identity-Based Interpretations of Inequalities Over the Life Course in France
- Young-Adulthood Development in the Lived Experience of Persons With Kidney Failure: Challenges of Youth, Disability, and Transition
- Doing Gender, Doing Disability: How Disabled Young Adults Approach Gender in Response to Ableism
- The Reception of Disability Policy in France: A Qualitative Life Course Perspective on Policy Impact
- College Completion Among Young Adults With a Disabled Sibling
- Negotiating the Spousal Caregiving Relationship Following Spinal Cord Injury
- Disability and Precarious Work Over the Life Course: An Application of Key Concepts
- The Disability Gap in Time Use by Age Across the Life Course
- Index