This chapter argues that able power is and has been embodied in what Plato called “those of the best,” men who claim to ennoble the world with their eugenic superiority. Able power, legitimated by this view of congenital superiority, represented the disabled body in a pejorative language of humiliating tropes, the most common of which, in the terminology of antiquity, were deformity, defectiveness, and monstrosity. In modernity, able power absorbs scientific and pseudoscientific ideology into its agenda of legitimation by superimposing on top of the ancient and debilitating ideological categories medical terms that pathologize disabled people and ethnic others who are caught in the civilizing web of White European colonialism. The colonizing predilection of Western able power and its racist representations of non-Western ethnicities as inferior and defectively embodied is explored in a “historical sociology” of disability. Antique and modern imperialisms are examined. In these two moments, able power deploys economic and military might to subdue inferior persons abroad while simultaneously oppressing “dysgenic” bodies at home. The focus is on these two sociological moments because they, it is argued, represent the policies and practices of able power and the “ideology of able-bodiedness” at its most aggressive and violent.
This chapter considers the relations between disability and the political in contemporary societies. This includes a discussion of possibilities of human agency and social movement capacities in the disability field. The analysis discusses several models of disability and statuses of bodies, which are evident in theory, movement advocacy, and public policy. These are the personal tragedy and worthy poor model, the biomedical model, the social model, the human rights model, and the psychoemotional model of disability. The chapter then examines activism as a repertoire of activities and roles taking place in various jurisdictional spaces and territorial scales of mobilization. The chapter next analyzes three forms of social injustices and advocacy strategies pursued by contemporary disability rights movements: activism centered on recognition, redistribution, and representation. Concluding observations call on the need to examine disability and the struggle for social justice in relation to a politics of cultural recognition and identity, a politics of socioeconomic redistribution of material goods and services, and a politics of democratic representation that combines conventional and alternative modes of decision-making. Over time, the mix and style of activism may shift at the level of the individual or family, the agency or movement organization, or the national and international sectors. This gives disability activism and the struggle for social justice dynamic qualities enacted through symbolic, materialist, and political concerns in interaction with public and private authorities.
In this chapter, the author considers some of the theoretical and methodological conundrums that she encountered in her qualitative research that has focused on later life experiences of the aging body as a site of inequality. Western culture is replete with deeply entrenched ageist stereotypes, which position old bodies as inherently asexual, dependent, frail, obsolete, senile, unproductive, and undesirable. Negative cultural constructions of old bodies are further reflected in and buttressed by masculinity and femininity ideals as well as societal assumptions concerning personal responsibility for health. Collectively, these cultural norms shape research in powerful ways as they lead to the avoidance of certain topics, taken-for-granted assumptions that are difficult to elicit or interrogate, and complex power dynamics between researchers and study participants. Reflecting on the intricacies of researching later life body image and embodiment, I offer some suggestions about how the challenges might be reframed as opportunities.
Anthony Ryan Hatch, Julia T. Gordon, and Sonya R. Sternlieb
The new artificial pancreas system includes a body-attached blood glucose sensor that tracks glucose levels, a worn insulin infusion pump that communicates with the sensor, and features new software that integrates the two systems. The artificial pancreas is purportedly revolutionary because of its closed-loop design, which means that the machine can give insulin without direct patient intervention. It can read a blood sugar and administer insulin based on an algorithm. But, the hardware for the corporate artificial pancreas is expensive and its software code is closed-access. Yet, well-educated, tech-savvy diabetics have been fashioning their own fully automated do-it-yourself (DIY) artificial pancreases for years, relying on small-scale manufacturing, open-source software, and inventive repurposing of corporate hardware. In this chapter, we trace the corporate and DIY artificial pancreases as they grapple with issues of design and accessibility in a content where not everyone can become a diabetic cyborg. The corporate artificial pancreas offers the cyborg low levels of agency and no ownership and control over his or her own data; it also requires access to health insurance in order to procure and use the technology. The DIY artificial pancreas offers patients a more robust of agency but also requires high levels of intellectual capital to hack the devices and make the system work safely. We argue that efforts to increase agency, radically democratize biotechnology, and expand information ownership in the DIY movement are characterized by ideologies and social inequalities that also define corporate pathways.
Patrick Kermit and Terje Olsen
This chapter presents and discusses barriers that Deaf people who have Norwegian Sign Language as their first language face in encounters with the Norwegian criminal justice system. Since this system is based exclusively on spoken language, and mainly depends on the individual law professional’s ability to establish critical, self-reflective practices in each case, Deaf people’s legal safety, as demanded by the rule of law, cannot be taken for granted. Establishing a public, independent, professionalized sign language interpreter service in Norway, however, has helped to reduce risks for Deaf people. Independent interpreters can demand changes in the criminal justice system’s practices, thus making these practices more accessible to Deaf people. Empirical examples illustrating the interaction between Deaf people, law professionals, and interpreters are presented and analyzed. This interaction is less characterized by conflict and more by cooperation and mutual recognition, where both Deaf people and law professionals state their confidence and trust in their interpreters. The chapter concludes that structural change and organization, such as the establishment of an independent public interpreter service in Norway, trump general and well-meant inclusive intentions in organizations such as the Norwegian criminal justice system when it comes to secure Deaf peoples’ rights and the prevention of miscarriage of justice.
Justine E. Egner
This chapter explores the ways in which disability and sexuality have been conceptualized and understood as incompatible and how this perceived incompatibility renders LGBTQ+ disabled people invisible within both popular society as well as their identity communities. Employing virtual ethnography, the chapter focuses on the unique experience of intersectional invisibility as described by LGBTQ+ disabled people and organizations in virtual spaces. It explores the relationship between disability and sexuality and disability identities and LGBTQ+ identities through an empirical examination of organizational discourses and personal narratives present in online spaces. Findings suggest that LGBTQ+ disabled people and advocacy groups seek to reject and resist current narratives that render them invisible by broadcasting their experiences through virtual communities and media.
In this chapter, the author examines his embodied experience with Lyme disease to chart how power and knowledge within the dominant biomedical framework were produced via engagement with medical providers. Analyzing the medical governance of Lyme disease through actors’ everyday decision-making practices, the author shows how, in failing to accurately diagnose and treat his sick body and depriving him of treatment, credentialed health care providers reproduced culturally dominant, institutionalized, yet inadequate formations of medical power-knowledge. The author’s experience of this disease illustrates how the manufacture of disease categories and their ascription regulates bodies that do not fit into established categories. Analyzing data from his own life in light of medical science research, the author advances an analytical autoethnography and dissenting embodied knowledge, legitimizing the diagnostic category of chronic Lyme disease, and introducing two concepts—contested disease and contested care—to theorize the complex phenomenon of Lyme disease.
Contextualizing Disability Experiences: Understanding and Measuring How the Environment Influences Disability
Kenzie Latham-Mintus and Sabrina Cordon
Scholars and advocates have long proposed that an individual’s impairment is not the source of disability, but instead it is social and physical barriers put in place by society that are disabling. The purpose of this chapter is to (1) provide an overview of how contextual factors are conceptualized and measured in the current literature; (2) describe the key findings and discuss what the current research tells us about the salience of the environment for individual disability experiences; and (3) identify critical gaps in the literature and discuss future recommendations. The chapter takes a place-based approach and focuses on the communities and neighborhoods in which people with disabilities live. The chapter also explores how the intersection of disability and other social identities is influenced by the environment. Finally, the chapter concludes by discussing existing gaps in the literature and recommendations for future research.
Lindsay Sheehan and Patrick W. Corrigan
Strategies to diminish stigma’s harm are driven by three agendas. (1) A services agenda, which seeks to decrease stigma so people better engage in care, (2) a rights agenda, which seeks to stem the injustice of stigma so people are able to meet life goals and aspirations, and (3) a self-worth agenda, which strives to replace shame with self-affirming attitudes in people impacted by stigma. With these agendas in mind, we summarize research on anti-stigma strategies in terms of public stigma and self-stigma. Two approaches have dominated efforts to lessen public stigma approaches: education and contact. Contrary to the predominance of education in public health approaches to attitude change, education effects are relatively muted, especially compared to contact. Research consistently shows that public encounters with people in recovery lead to significant improvements in stigma. Several approaches to self-stigma change have emerged, including psychoeducation, cognitive-behavioral, and strategic disclosure. Psychoeducation teaches people who internalize stereotypes about how these stereotypes are false. Cognitive-behavioral strategies then guide participants in challenging the false stereotypes they have used to cause personal shame. Strategic disclosure reflects insights on how being in the stigma closet harms self-esteem and self-efficacy. People who decide to come out with their mental health experiences report less self-stigma and greater empowerment. Unlike public stigma, research is unclear about the success of these self-stigma approaches vis-à-vis the others.
The need to focus on disability in the Global South as an academic and practice endeavor has garnered some support in recent years, often backed by frequent references to a disability and poverty relationship, and a consequent need to link disability and international development. Indeed, calls for disability mainstreaming, disability targeting, and emerging discourse on disability-inclusive development (DID) have stepped up, accompanied by policy developments and declarations such as the United Nations Convention on the Rights of Persons with Disabilities (CRPD) and the sustainable development goals (SDGS). Despite these shifts, disability remains marginalized in development research, policy, and programs. Overall, there is a lack of critical discussion on “disability and development,” and difficult questions, including those regarding the implications of development for disabled people, are often forsaken in favor of an approach that seeks to simplify and generalize. The result is that accounts on disability and development are not only partial and fragmented but also neocolonizing. Inspired by critical disability studies and decolonial theory, this chapter reflects critically on some of these concerns, addressing emerging issues that arise when Global North disability discourse and “development” confront complex and dynamic heterogeneous Southern spaces and disability.
Cumulative Disadvantage in Employment: Disability over the Life Course and Wealth Inequality in Later Life
Kim Shuey and Andrea Willson
Theories on the accumulative nature of disadvantage across the life course suggest that disability during the working years contributes to future disadvantage into old age. This chapter reviews theories of cumulative dis/advantage and illustrates their application using Panel Study of Income Dynamics data to examine wealth accumulation associated with longitudinal patterns of work disability across the life course beginning in early adulthood. The accumulation of economic disadvantage across the life course associated with disability can be seen in findings related to the timing and duration of work disability and its relationship with accumulated wealth approaching retirement. For example, among those with early-onset work disability, over half were in the bottom wealth quartile in their mid-60s, compared to one-fifth of those who never experienced a work disability. Individuals experiencing disability on and off over the work life course were almost three times more likely than the never work disabled to have wealth in the bottom wealth quartile, and those who never experienced a work disability were more likely to be in the top wealth quartile.
Kathleen M. Cumiskey
This chapter discusses the increasing role that mobiles are playing in meaning-making related to significant events in users’ lives. The focus of this chapter is on death and loss in relation to increasing ubiquity and ever-presence of mobile devices. The unique features of mobile communication can shift users’ views of death and culturally specific rituals related to grief and mourning. A review of the literature moves the role of mobiles in death beyond the use of social media platforms and online memorialization to include a focus on the devices themselves. When a death or loss occurs, specific capabilities and functions of mobile devices shape how users perceive and reflect upon shifts to their assumptive worlds.
J. Dalton Stevens
As rates of disability have risen over the last decade for all age groups, families have taken on more care responsibilities. Current theoretical frameworks of disability and care work are largely unconnected, limiting the ability of researchers to account for experiences of care work and receipt. How can sociologists blend these disparate theoretical and empirical literatures to develop a more comprehensive understanding of care work in the context of disability? This chapter proposes the Life Course Disability Care Work Integrated Model (LCDCW) as a potential theoretical framework informed by life course theory, a sociopolitical model of disability, and theories of care work that could unite the literatures. The model enables researchers to identify overlapping and unique structural and interpersonal barriers to care for care workers and care recipients in the context of disability. The chapter then reviews the empirical literature on people’s experiences with disability receiving and providing family care to highlight the framework’s usefulness, emphasizing the unique and shared contexts that shape care relationships and the problems that arise therein. The empirical literature review identifies that people with disability are providers and recipients of care, an essential link between disability and care work literatures. The conclusion summarizes the main contributions of the review, highlights existing gaps in the literature and opportunities for future research, and illustrates how disability and family care work scholarship can influence disability-related policy and programs.
Paula Campos Pinto
Using a sociological perspective, this chapter examines the social and political conditions that have enabled the emergence and wide dissemination of the human rights model of disability. Taking the Convention on the Rights of Persons with Disabilities as the hallmark of this paradigm shift, it provides an overview of the treaty and discusses the meaning and scope of the changes involved in the human rights model of disability, enshrined in this convention. Next, it highlights epistemological, theoretical, and methodological tools of the sociology of human rights and consider their potential for understanding disability rights struggles and achievements worldwide. In the final section, drawing on the experience gathered from the implementation of Disability Rights Promotion International (DRPI), a global initiative to monitor disability rights worldwide, the chapter discusses the opportunities and challenges facing a sociologist from the Global North conducting research on disability rights in the Global South.
Lisa Schur and Douglas L. Kruse
This chapter examines the prevalence, causes, and consequences of precarious work among people with disabilities. New US evidence from the government’s Current Population Survey, and reviews of prior studies, show that workers with disabilities are more likely than those without disabilities to be in precarious jobs. This is explained in part by many people with disabilities choosing precarious jobs due to the flexibility these jobs can provide. Other people with disabilities, however, face prejudice and discrimination in obtaining standard jobs and must resort to taking precarious jobs with less security, lower pay and benefits, little or no training and opportunities for advancement, and few, if any, worker protections. Workers with disabilities tend to have worse outcomes on these measures than workers without disabilities in every type of employment arrangement. The disability pay gap is higher in precarious jobs than in full-time permanent jobs. The mixed evidence suggests that precarious jobs create good employment outcomes for some workers with disabilities but bad outcomes for others. While continued efforts are needed to decrease barriers to traditional employment for people with disabilities, efforts are also needed to bring higher pay and greater legal protections to precarious workers, which would especially benefit workers with disabilities.
Participation is considered a key component of many disability frameworks, yet the concept of social participation remains amorphous and contested. This chapter reviews how common disability frameworks conceptualize activities, roles, and environments in relation to participation. It then discusses challenges to measuring (social) participation through the elements of activities, roles, and environments and describes how time diary data can be used to understand daily life with disability. Finally, it analyzes the nationally representative American Time Use Survey to compare how individuals with and without disabilities spend time in 15 activity categories, across six physical locations and eight types of social interactions. Results indicate that people with disabilities spend more time at home, less time in public places, and less time in transportation than people without disabilities. They also spend more time alone and have less contact with others. However, these results depend upon activity type, illustrating the importance of integrating social and environmental contexts in empirical and theoretical models of participation differences by disability status.
Anthony R. Bardo and Ashley Vowels
This chapter provides a synthesis of the literature on the transition to adulthood among emerging adults with a disability in the United States. The life course paradigm was used to frame the discussion in the context of demographic trends and contemporary circumstances regarding major life transitions in the areas of education, employment, independent living, and sex, marriage, and parenthood. A critical assessment of the current state of the literature from a social versus medical model of disability in these central life domains provides a foundation from which sociologists can explore processes of cumulative inequality embedded in the relatively uncharted lives of transition-age youth with a disability.
This chapter outlines the structural underpinnings of the educational experiences of young adults with disability in the United States, drawing connections and distinctions along the trajectory from kindergarten through grade 12 and then into higher education. With relatively little sociological engagement with educational disabilities, the chapter contributes a theoretical framing for understanding disability in higher-education settings by integrating ideas from disability studies and classic sociology-of-education literature, particularly documenting tensions between disability ideology and dominant US educational ideals of merit, individual accountability, and standardization. This chapter demonstrates how complete understandings of educational inequality depend on sociologists’ more frequent engagement with disability and the integration of ideas from disability studies. Finally, the chapter concludes with tangible ways that practitioners, parents, and youth can disrupt the reproduction of disability as a category of inequality.
Bryan L. Sykes and Justin D. Strong
While the rights of people with disabilities have ascended in global importance and institutional recognition, nation-states remain instrumental in addressing health inequalities. Worldwide, people with disabilities face formidable barriers to optimizing their life and health chances, and these barriers further hinder political and civil participation. This chapter seeks to understand how disability rates are associated with observed democratic principles, including the enshrinement and protection of disability rights into national laws and constitutional doctrines. Put differently, to what extent do more egalitarian and healthy democracies address the material needs of people with disabilities? To answer this question, we combine data from four publicly available, international databases to examine disability rates across global and national policies. We show that considerable variation exists across countries for three axes of inequality: disability-related health metrics, disability policies, and democratic ideals. Our findings speak to the importance of exploring how the structure of democracy itself and its attendant democratic ideals are central considerations in the production of population health, disability rates, and social inequality.
Richard Scotch and Kara Sutton
This chapter provides an overview of the social movement advocating for disability rights, including its origins, goals, strategies, structure, and impact. The chapter’s primary focus is on the movement in the United States, although developments in other nations are also discussed. The chapter reviews the origins of the disability rights movement in the 20th century in response to stigma and discrimination associated with disabilities and the medical model of disability; addresses the movement’s advocacy strategies, as well as the social model of disability that provided the conceptual underpinning for its goals and activities; and describes how the major components of the movement, including cross-disability organization, were brought together through collaboration and the common experiences of disability culture.