Disabilities and the Life Course: Volume 14

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.

Multiple sclerosis (MS) is a chronic condition with variable physical, cognitive, and quality of life impacts. Little research has investigated how MS outcomes vary by social identity (race, gender, disability, age, sexual orientation, and nationality) and social location (place within systems of power and privilege). However, emerging evidence points to racial and ethnic group disparities in MS outcomes. This chapter integrates core concepts from the life course perspective and an intersectional feminist disability framework to interrogate the role of diagnosis pathways in determining differential MS outcomes. MS diagnosis pathways (the time from symptom onset to the point of diagnosis) are a logical place to begin this work given the varying nature of symptom onset and the importance of a quick diagnosis for optimal MS outcomes. Whereas the life course perspective provides a framework for understanding disability transitions and pathways across the life span, an intersectional feminist disability framework centers disability within an axis of overlapping social identities and locations. The combination of both frameworks provides an approach capable of examining how MS disparities and inequities emerge in different contexts over time. The chapter begins with an overview of MS and current knowledge on disparities (mainly racial) in MS prevalence, diagnosis, and outcomes. The chapter proceeds to describe the utility of key concepts of both the life course perspective and intersectional frameworks when researching health disparities. Finally, the chapter ends with a theoretical application of an intersectional feminist disability life course perspective to investigate disparities in MS diagnosis pathways.

This chapter draws on biographical interviews to analyze identity-based interpretations of inequalities by disabled people in France, as these understandings are formed and transformed over the course of their lives. We combined the material from two different studies to create a corpus of 65 life stories from working-age people with contrasting impairments in terms of type, degree, and onset, as well as various profiles in terms of gender, race, and class. When talking about the inequalities they face, respondents commonly made use of identity labels (gender, class, race, disability), among those available in their micro and macro environments. They usually presented these categories as separate and cumulative, and only a few upper-class disabled women developed reflections in line with an intersectional model. This fragmentation of identity categories translated into the framing of each inequality encountered through a single lens. Respondents mentioned race, class, or gender mainly when evoking topics and contexts that the public debate highlights as problematic, while their references to disability covered a variety of disadvantages. Although the interview situation might have fueled this framing, we also showed that certain earlier socialization processes led people to believe that their disability was the source of the inequalities they encountered. Lastly, we identified three turning points that encourage shifts in the interpretation of inequalities; these are the availability of a new label to qualify one's experience, a competing identity-based interpretation for a mechanism, and access to a different, intersectional model of inequality.

This study examined dimensions of young-adulthood development in lived experience reported by young persons (19 women, 18 men) with the disabling condition of kidney failure requiring chronic dialysis or kidney transplantation. In semistructured phone interviews, participants (ages 23–37) described their family/living situation, employment and community activity, current situation, and experience. Participants' qualitative responses about “the way you see things, do things, feel about things” and “how you feel about yourself” were examined to identify themes. Limited achievement of proposed “successful” dimensions of young adulthood characterized the study cohort, based on indicators included in the interview. In qualitative data, the theme of perceived stigma and spoiled identity (Goffman, 1963) was reflected in comments offered by participants regarding their self-confidence and motivation to pursue goals. A second theme in participants' qualitative responses was a sense of isolation from age peers who shared their condition, and participants expressed frustration around having an age-inappropriate condition (“why me?”). Perceived stigma and spoiled identity impact social ties and life goals and are understudied influences in the life course trajectory of young persons with kidney failure and the challenges inherent in navigating health status and developmental life course transitions.

Gender and disability are intimately connected as embodied experiences that young people navigate interactionally. Disabilities scholars have theorized that men and women with chronic health conditions face uniquely gendered challenges. Theories of gender and disability centered on youth continue to gain prominence as the population of children and young adults with chronic health conditions grows. This study draws on data from 22 in-depth interviews with young adults diagnosed with chronic health conditions in childhood in the United States. Women, men, and gender nonbinary individuals report that doing disability in interactions in childhood meant doing gender in expected feminine ways. Specifically, interviewees described increased empathy, a deep understanding of their own emotions, and the ability to use adversity to connect with and benefit others as expectations. Interviewees employed or resisted doing gender in ways that reflected individuals' gender locations. Women and nonbinary individuals saw feminine performance as a sign of weakness, often resisting demonstrating it in interactions. On the other hand, feminine performance reportedly impacted men in the sample in positive ways. This study takes a life course approach to illuminate how the ableist expectations expressed to disabled children are gendered and impact how disabled young adults negotiate an ableist world.

How can a qualitative life course approach inform the analysis of the impact of disability policy on individual lives? This contribution puts forward the concept of policy reception in an effort to apply the key principles of a life course perspective to the study of policy impact, a perspective which is of particular relevance in the case of disability policy. Drawing on a broader qualitative study of the reception of disability policy in France, the paper, focusing on the in-depth analysis of two life stories, makes two main contributions. The first is theoretical, putting forward the concept of policy reception to address the missing link between “the state and the life course,” as pointed out by Mayer and Schoepflin (1989). The second is methodological, detailing how biographical interviews, following this life course approach, can be used to operationalize this concept of policy reception. These contributions are illustrated by study results focusing on the reception of disability-related educational policies.

Twelve percent of families in the United States have a child with a disability, yet little is known about the long-term consequences of growing up with a disabled sibling. This study builds on previous research regarding disability effects on families and offers an additional view on the linked lives of families and, in particular, siblings. Using secondary data from the National Longitudinal Survey of Youth 1979 Children and Young Adults, this study examines the odds of college completion among young adults with a disabled sibling during childhood. Specifically, I examine the gender differences among those who had a sibling with a disability. Women are more than 35% less likely to complete college if they had a disabled sibling during childhood; there is no significant difference by sibling disability status for boys. To understand whether children in low-resourced families are particularly penalized by having a disabled sibling, I examine whether various family resources attenuate the low graduation odds among those who had a disabled sibling. I find that having stably married parents during childhood largely eliminates the college completion gap between those with and without a disabled sibling. However, increases in mothers' education or family income do not attenuate the college completion gap. By identifying this gender disadvantage in college completion, this study shows that disabilities have consequences not just for disabled individuals but for their siblings as well, shining a light on a hidden cost of disability on families.

Sustaining a spinal cord injury (SCI) at any point in time is life-altering – physically, emotionally, and financially – for all persons affected by the injury, but it can place unique challenges on younger married couples. This study examines the transition to injury for 18 couples (ages 21–55). Data were collected using individual interviews with each partner at three time points following injury and observation in the rehabilitation setting (Creekview). This resulted in 96 individual interviews and 300 hours of observation. Using the life course perspective as a guiding theoretical framework and thematic analysis, I examined how the healthcare institution influenced the couples' relationship during their rehabilitation stay and the subsequent transition home. Creekview staff and couples accepted and reinforced the dominant cultural narrative that women are natural caregivers, but larger social structures of class, gender, and the division of paid and unpaid labor worked together to push some women into caregiving faster or prevented other women from engaging in caregiving. This study examines how younger couples move through the caregiving career during an off-time transition when the expected outcome is not long-term care placement or death. This study identified three main types of caregivers, each with their own path of caregiving – naturalized, constrained, and resistant caregivers. Overall, the transition to injury is complex and this study highlights some of the ways the marital relationship is affected by a nonnormative, unexpected transition.

This study examined changes in work precarity (i.e., job insecurity and income insecurity) and involuntary job loss following the start of the Great Recession in 2007 among people with and without disabilities. Using five waves of nationally representative data from the Americans' Changing Lives (ACL) panel study, the findings demonstrated that people with disabilities who had early experiences of income insecurity were more likely to experience later income insecurity than people without disabilities. Those who had a functional disability and experienced job insecurity and income insecurity at W1, in 1986, were also significantly more likely to experience involuntary job loss following the start of the Great Recession. These findings highlight the disproportionate impact of early work precarity for people with disabilities and are discussed as an application of the life-course concept of cumulative disadvantage.

How people spend their time is an indicator of how they live their lives, with time use over the life course conditioned both by age and by participation in age-graded institutions. This chapter uses nationally representative data from the pooled 2008–2020 American Time Use Survey (ATUS) to evaluate how time use in 12 activity categories varies by age, gender, and disability status among 137,266 respondents aged 15 and older. By doing so, we quantify the “disability gap” in time use between men and women with and without disabilities, identifying at what age and by how much people with disabilities experience time differentials in activities of daily living (ADLs), instrumental activities of daily living (IADLs), and other indicators of social participation. Results indicate that – at many ages – patterns of time use for people with disabilities deviate from those of people without disabilities, with more pronounced differences in midlife. Further, the magnitude of women's disability gaps equals or exceeds men's for sleeping, and nearly all ADLs and IADLs, indicating that disability gaps are also gendered.