Research in Social Science and Disability – serie

The first volume presents a collection of exciting papers exploring several new areas of disability research. The contributions include: examination of the media representation of disability and coverage of disability policy issues which gives an understanding of the far reaching impact of the fourth estate; an historical analysis of the correspondence between the identifier of Down syndrome and Darwin that lends insights into the development of interpretations of mental retardation particularly Down syndrome as a throwback to the more primitive nature of man; analysis of hospital discharge data which demonstrates that persons with chronic conditions and impairments are more likely than those without to need hospitalization for injuries resulting from violence; and an overview of voting behavior among persons with disabilities. Subsequent volumes will focus on specific subjects related to disability issues.

This volume of "Research in Social Science and Disability" focuses attention on the dual themes of theory and methodology that must form a basis for studies of impairment and disability. It addresses issues that include: critiques of current concepts of disability; the fit between sociological role theory and the concept of disability; the operationalization of different definitions of disability; conducting surveys with people with impairments; and, the reliability and utility of several qualitative research methodologies as applied to impairment and disability. Overall, the papers in this volume represent the beginning of a resurgence of interest in social science theories and methodologies within the study of impairment and disability.

The 1994-95 Disability Supplement to the National Health Interview Survey (NHIS-D) sponsored by the US Department of Health and Human Services provided a rich resource for the quantitative studies included in this volume. Nationally-epresentative surveys that focus on collecting more in depth information about persons with disabilities are rare, therefore these studies are unusual in the level of data they include and the important insights into disability issues that they provide. These come at a time when much more information about the experiences of disability is needed to inform policy and evaluate programmatic changes. The first paper of the volume discusses in detail the genesis and methodology of the NHIS-D. This volume contains a variety of different types of papers that add not only to our information about persons with disabilities, but also serve as a useful guide to using this extensive data set to address the numerous questions about this population. In the first section, two papers describing methodological issues in using the NHIS-D are described. This section includes a paper on response patterns and another on a strategy to overcome the problem of missing data. The next section contains three papers that use the NHIS-D to develop a variety of operational definitions of disability and then use those operational definitions to describe specific aspects of disability, including aging, the International Classification of Functioning, Disability and Health, and intellectual and developmental disabilities. The third section uses the NHIS-D to identify limitations and barriers experienced by persons with disabilities. Included in this group of papers are topics addressing barriers to work , mobility limitations and health care services, and unmet needs for support services among children.

Disability policy has become an increasingly important issue in countries around the world. More and more, as populations are exposed to war and civil conflicts, natural disasters, environmental poisons along with the effects of normal aging, accidents and poverty, disability has become a growing public health and civil rights problem. In order to develop reasonable policy solutions, countries need accurate, reliable estimates of the size and make up of their disabled population. Comparisons of policy solutions cross-nationally require that the data that is used as the basis for the policy decisions is comparable. At the same time that the world has determined an important need for data on populations with disability, the data that is available is still haphazard and not comparable. The UN has begun to address this need with a publication, the "Guidelines and Principles for the Development of Disability Statistics in 2001", and through the authorization of the formation of the Washington Group, an informal, temporary organization in the mode of a City Group. As a voluntary organization of National Statistical Office representatives, the purpose of the Washington Group is to address selected problems in statistical methods associated with the measurement of disability internationally. The papers in this volume reflect a sampling of the work done to this point by the Washington Group to address this important public health problem. The collection describes the background of disability measurement as the work of the group started from an international perspective and identifies other work being done in this area. It also provides snapshots of the data that is currently available and in use along with how the data is used in a variety of countries. Finally, a section on methodological issues identifies some insight as well as suggested solutions to key problems that will need to be addressed if the Group is to accomplish its task. This volume includes papers that examine the statistical problems associated with the measurement of disability internationally. It looks at country specific issues as well as overarching methodologies. It is an important contribution to disability and public policy.

Disability is often described in a way that suggests that it is a permanent and relatively stable state. Even when it is described as being socially constructed, the implication is that impairment leads to a permanent status of being 'disabled'. This volume argues that the relationship between impairment (physical state) and disability is neither fixed nor permanent but is fluid and not easily predicted. Furthermore, if this is true, we need to rethink how we are measuring disability. This volume attempts to reconceptualize disability not as static but a dynamic phenomenon which is related to social, cultural and historical contexts. It is part of the new social science emphasis on fluidity rather than stasis. The papers in the volume examine disability at all levels. Several look at micro-level interactional processes which shape physical conditions into disabilities or impairments into normality, some look at cultural differences over time in what constitutes disability and some look at how social processes and institutions create or deny the status of disability. The papers support the conceptualization of the fluidity of disability and have implications for its measurement.

This volume of "Research in Social Science and Disability" brings together interdisciplinary scholarship to examine a wide array of issues related to disability and community, a topic of critical importance academically and politically. The evolving and politically contested notions of community sit at the centre of much of the recent research on disability and, as researchers both create and reflect various ideas of membership when defining "disability" and aggregating individuals, their methodological decisions have significant implications for how we come to understand disability and community. This volume also examines a wide range of social institutions and practices such as education, employment, and cultural venues and the extent to which and how they include people with disabilities in the workings of these institutions. It includes research framed by a variety of theoretical perspectives and research methodologies and offers innovative ways to envision inclusive communities and, therefore, enables us to consider how to move forward to create them.

Disability can be either an ascribed status or an achieved status and its combination with other statuses will affect the person's social experiences. The term intersectionality has been used most often to discuss the ways in which the dual and simultaneous statuses of 'black' and "female' exist as facets of social structure and culture, interact in both those spheres, and affect individuals in ways which neither one does separately. Little attention has been paid to disability in this context, despite the many parallels to race and gender. This volume challenges critical thinking about the interrelationships with disability. It questions if the concepts and methods of intersectionality can be applied to disability at all or if they can be applied in the same way. The authors debate whether different conception of intersectionality would fit the disability context better and if there are methodologies which could be used to examine it. A variety of empirical evidence about situations in which disability intersects with other roles are also examined.

Physical structure, economic expectation or social relationship norms developed within various cultures can either restrict or support the participation of individuals with disabilities in society. The influence of environmental factors can vary significantly according to context, characteristics or by action difficulty. The objective of this volume is to identify and address environmental issues that support or restrict the participation of persons with functional limitations in society, either at the micro, meso or macro levels. The papers address both individual, societal, national and international levels of environment and shed new light on the processes involved with creating or modifying these environmental supports or barriers. Several papers approach the societal and intra-societal levels. The volume is separated into four parts; part one focuses on the larger disability environment from an international, national and community perspective, the second includes important theoretical and methodological approaches; section three highlights reviews of the environmental literature and the final section addresses personal experience with environmental barriers.

Current research in Sociology of Disability has a tendency to assume that very little written in this area until the last 20 years. However, this is not always the case. In part the lack of awareness of older writing occurs because of the ease of computerized searching for recent references or a sense that newer is better. It also reflects the assumption that Sociology as a field has ignored either disability as a social phenomenon or treated it solely as a medical phenomenon. While theorists and introductory textbooks have tended [and still tend] to ignore disability as a non-medical phenomenon and especially as a structured source of inequality, that does not mean that no attention was paid to disability in the earlier years. Rather, interest in disability from a sociological point of view exists as early as the late 1800s. The purpose of this volume is to explore that literature, with an eye towards encouraging current scholars not to ask “the same old” questions but to use the older writings as a basis for revolutionary as well as evolutionary thinking. What do the older writings tell us about what questions we should be asking, and what research we should be doing, today?

The current literature regarding employment among persons with disabilities produces research results dependent on definitions of work disability, the discipline within which research takes places, the model or paradigm of disability in which the research is framed, the methodology and measures used and the cultural context in which employment occurs. This volume seeks to address those factors which have made describing, predicting and examining the work experience of a person with a disability both different and difficult. Contributors examine less frequently anaylzed aspects of employment for persons with disabilities, and offer a variety of approaches to the conceptualization of work, how they differ across cultures, organizations, and types of disability. Topics covered include examination of range of contextual framing of employment for those with disabilities, well-being, the impact of gender, poverty and education and the collection concludes by examining the future of employment developments and trends and the impacts on inclusion of people with disabilities in the paid workforce.

COVID-19 has once again illuminated the ways in which health risks and negative health outcomes are tied to economic and social inequalities. Disabled people rank among those most disadvantaged in terms of education, income, and social inclusion and this exacerbated their risk of negative pandemic-related outcomes. From the start, it was clear that disabled people would be disproportionately affected by the pandemic and this solidified as the pandemic unfolded.Disability in the Time of Pandemic is a timely exploration of emerging research into the implications of the COVID-19 pandemic for people with disabilities in their varied communities and across their complex identities. Using the insights, perspectives, and methods of a variety of disciplines including Anthropology, Disability Studies, Education, Physical and Rehabilitation Therapies, Public Health, Psychology, Sociology, and Women’s and Gender Studies, authors explore the initial and ongoing effects of the global pandemic on people with disabilities in Canada, India, Poland, and the United States.The Research in Social Science and Disability series is essential reading for researchers and students across the social sciences interested in disability, social movements, activism, and identity.

Life course analysis recognizes that, depending on the exact life stage, different factors and contexts can become important in shaping identity and experience, as well as the ability to accomplish and respond to certain life transitions and events.Prioritizing individuals’ lived experiences, Disabilities and the Life Course broadens the application of life course perspective to explore how impairments and disabilities factor across life span and impact assorted life stages. Conceptual, methodological, and empirical, chapters consider how individuals might think about, maneuver, and encounter impairments, or ‘become disabled,’ in a variety of ways depending on time, place, and life contexts. Contributors highlight commonalities and differences in identity and experience with special attention to intersecting social locations and the diversity of impairments and disabilities.Featuring a framework rarely applied in the field of disability studies, Disabilities and the Life Course explores not only a range of disabilities and impairments but also a diverse array of life course experiences, deepening knowledge across both fields for the widest possible impact.The Research in Social Science and Disability series is essential reading for researchers and students across the social sciences interested in disability, social movements, activism, and identity.

The employment landscape is evolving rapidly, driven by technological innovations, shifting employer practices, and new government policies that redefine where and how work is performed. However, these transformations have not been universally beneficial. Future research is required to explore the potential disproportionate impact they might have on marginalized populations already excluded from the labor market.People with disabilities are one group who continue to have a low employment rate in the United States (U.S). They are also more likely than those without disabilities to work part-time or in precarious jobs with less job security, lower pay and benefits, and minimal worker protections. This volume of Research in Social Science and Disability brings together leading research that examines how systemic policies and practices, pandemic-driven transformations, and strategies for diversity, equity, and inclusion (DEI) continue to shape the employment landscape for workers with disabilities.Disability and the Future of Work explores changing workplace dynamics and proposes strategies for fostering an inclusive and equitable future of work for people with disabilities.

Disabled sexuality has too often been cast as taboo, as disabled people are routinely de-sexualized, infantilized, or positioned as objects of pity and (over)protection. Nevertheless, despite facing numerous obstacles to sexuality, sexual expression, and parenting, individuals with disabilities have consistently showcased resilience, agency, and creativity. Disabilities, Pleasures, and Sexualities: Transforming Perceptions, Cultivating Desires, volume 17 of the Research in Social Science and Disability series, seeks to highlight and celebrate these qualities with contributions that challenge stereotypes, reimagine expressions of sexuality, illuminate aspects of reproduction and parenting, and explore different forms of intimate relationships. They recognize, affirm, and celebrate the reality that many disabled people already live full and fulfilling erotic lives. With contributions that foreground the lived experiences, representations, and self-understandings of disabled people as sexual beings, some contributions explore how disabled individuals and communities resist the social, cultural, and political forces that render their sexualities deviant, invisible, or dangerous. Other contributions turn to the urgent task of transforming sex education, critically examining how sex education for disabled people can be radically transformed. Finally, there are a number of pieces that highlight how disabled people navigate the affective, embodied, and increasingly digital landscapes of intimacy and connection. In sum, this volume imagines sexuality as a site of access, interdependence, creativity, and joy, in hopes that it reshapes the broader sexual cultures in which we all participate.

The past 50 years have witnessed a transformation in the structure and function of families and households. The social and demographic catalysts for these changes – including but not limited to delayed marriage, the legalization of same-sex marriage, women’s increased labor force participation, and declines in fertility and mortality – have further impacted norms around family life and the performance of formal and informal family roles. Despite these radical shifts, however, family and personal relationships are not well-represented in disability scholarship.In the interest of expanding disability scholarship on families, this volume of Research in Social Science and Disability brings together research and theoretical perspectives that challenge and revise dominant perspectives on disability and the changing contexts of family and personal relationships. Rooted in a sociological and anti-ableist understanding of families which recognizes that families are not only shaped by individuals and individual relationships, chapters instead concentrate on the social contexts in which families exist to shift our focus away from individuals and allows us to engage with the social structures and status hierarchies that may privilege or undermine families and relationships to varying degrees.Showcasing conceptually innovative work and cutting-edge methods related to the study of families, Disability and the Changing Contexts of Family and Personal Relationships presents not just a groundbreaking perspective on disability and family life, but also a new paradigm in disability scholarship.

This volume explores questions about narrative frameworks in disability research. Narrative is a omnipresent meaning-producing communication form in social life that is both cultural and personal. Public understandings of disability tend to follow a medical storyline in which disability is a personal tragedy to be treated through professional intervention - a frame that disempowers and fails to resonate with many disabled people. Scholars in disability studies and the social sciences have proposed an alternative that portrays social structures, forces, and attitudes as the problems to be resolved - a frame that, while empowering, may neglect, or even repress, some kinds of personal disability stories. This volume seeks to answer the call for richer, more diverse understandings of disability. We explore how narrative inquiry can broaden perspectives on disability to include pain, suffering, chronic illness, and episodic disability, as well as the perspectives of family members and caregivers, while also serving as a platform for dismantling prejudice and discrimination in order to promote positive social change.