Disability as a Fluid State: Volume 5

Disability is often described in a way that suggests that it is most often a permanent state. Several, if not most, of the concepts and models of disability suggest this. Even when it is described as being socially constructed, the implication is that an impairment leads to a permanent status of “disabled” within that social, cultural, or historical milieu. However, many types of changes can be seen on an intrapsychic level or on an individual or group/societal level; across time, cultures, societies, and subcultures; or within or across any other social unit. 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 or counting disability.

The chapters in this volume examine this premise from many points of view. Several look at micro-level interactional processes over time, some look at cultural change over time and their effects on definitions and measurements, and some look at how social processes shape physical conditions into disabilities or impairments/disabilities into “normality.”

People subjectively engage in the production and reproduction of what constitutes “feeling normal.” Objective standards of normalcy for the able-bodied are created and maintained by institutions (e.g., medicine, the state, business, the mass media, and family), and these standards are learned by individuals who socialize the next generation in a continuous cycle. Having a disability does not exempt a person from standards and values of “able-bodied normalcy,” nor does it prevent her/him from reproducing these standards for future generations. Thus, it is possible, if not probable, that persons with disabilities live in and reproduce the able-bodied lifeworld, sustaining, what is for the person with a physical disability, an unattainable standard of normalcy. Approximating and ultimately achieving “normalcy” in this situation or at least the presentation of “normalcy” (Goffman, 1959, 1963) may occupy a sizeable portion of everyday life. More importantly here, “feeling normal” emerges when the social constructions of reality allows the person with a physical disability to be part of a generation and everyday life. There is, in other words, a “frame” for defining normality, and physical disability is a key to changing this frame (Goffman, 1974).

This chapter explores the process through which one's moral career proceeds as one acquires a physical disability later in life. The author, who acquired a disability later in life, explores Goffman's notion of “moral career” as a process constructed from one's experience with both physical access and social access to the environment in which everyday interaction takes place. Using the extant literature and his personal experience, the author argues that one's identity as a person with a disability is always in a state of evolution. Rather than stable and fixed, it is unstable, although the rate of change is quite variable.

People in all cultures of the world classify other people most readily in easily identifiable categories. Examples of such categories are race, gender, economic, and physical difference. These categories make the world intelligible because they assign roles and functions attached to the individuals that fill the category. Racial, gender, and other categories that reflect difference may change over time as to the meaning and assigned roles and functions, but the very fact of them being a criterion for classification remains rather unchallenged. Yet the very fact of classification may question whether individuals with disabilities belong to the most essential of all categories, the human category. With classification, a statement of exclusion or inclusion in the human category is imminent.

This chapter asserts the theoretical importance of a relational approach for examining the historical development of civil rights for people with intellectual disabilities. A relational approach examines contestations over rights as embedded within and across various groups, settings, and times. Through this approach, we see, first, that struggles over rights are primarily struggles over “relational visions,” or the desired relational structure across groups. Second, rights for people with disabilities intersect with rights for other minority groups, and therefore, we must examine the broader stratification and relational structure. Third, rights developed differently depending on relational setting. Finally, rights have been used as “technologies of power,” requiring “normative” behavior for inclusion. Overall, a relational approach provides a set of concepts and a theoretical framework that furthers our understanding of citizenship for people with intellectual disabilities as it transformed through time and as it developed alongside citizenship for other populations.

A forward thrust drives the theoretical narrative of disability-in-society, as told by scholars of recent decades. Consider these titles (with emphases added): From Stigma to Identity Politics: Political Activism among the Physically Disabled and Former Mental Patients by Anspach (1979); From Good Will to Civil Rights by Scotch (1984); Moving Disability Beyond Stigma a collection edited by Asch and Fine (1988); The Disability Rights Movement: From Charity to Confrontation by Fleischer and Zames (2001). Each title is like a revved-up engine. Together, they convey a message of forward movement in the status of people with disabilities. The road they all travel starts from a negative starting point and ends at a clear and a more desirable, if not yet perfect, destination. The starting point is the subordinated and powerless status of persons with disabilities – a status based on stigma wrapped in pity. The destination: empowerment. These analyses focus on the United States; their authors, while not all sociologists, are close enough for our purpose. The road they all cover starts (chronologically speaking) around the 1940s, and extends – in the case of the earliest – up to the late 1970s; two others cover up to the mid- and late 1980s; and the last one, to the current century.

The purpose of this study is to analyze public perceptions of disability and gain insight into the types of health conditions nondisabled people believe should be protected by the Americans with Disabilities Act (ADA). Understanding how the public interprets the ADA could offer perspective on which disabilities are viewed as legitimate and which are not. Data were gathered from a convenience sample of members from local community groups and college classrooms in a metropolitan university setting. Our analyses evaluate the clustering of health condition types due to similar traits and identify which attributes of the health conditions generate this clustering. Results from a series of quantitative and qualitative analyses (e.g., hierarchical cluster analysis, frequency analysis, discourse analysis, etc.) indicate nondisabled respondents perceive physical and cognitive health conditions that are visible, static, and externally acquired as legitimate disabilities that should be protected by the ADA.

The disability movement is a new social movement (Fagan & Lee, 1997; Shakespeare, 1993) based on identity politics (Anspach, 1979). Activists seek material benefits, challenge cultural constructions of disability, and create new collective identities on the part of recruits. Mobilization in this status-based movement, as in other new social movements, has focused in part on cultural and symbolic issues of identity (Bernstein, 2005; Johnston, Larana, & Gusfield, 1994; Shakespeare & Watson, 2001). Status-based movements challenge stigmatized identities that are externally imposed. Identities can be deployed strategically by movement activists and recruiters for multiple goals, including changing cultural representations of the group, gaining access to institutions, and/or transforming participants (Bernstein, 2005).

The concept that guides the present research is orientation toward disability. This concept is related to, but broader than, the concept of disability identity that has driven some previous research in this area (see, e.g., Gill, 1997; Putnam, 2005). The concept of identity or self suggests a person's definition of him or herself and usually includes both cognitive (“I am a person with a disability”) and evaluative (“I am proud to be a person with a disability”) components.

Using life history interviews with 10 college-educated Deaf women, this chapter investigates how the women saw themselves “between worlds” and how they balanced being both workers and mothers. While considering Gabel and Peters’ (2004) call for a theory of resistance in the field of disability studies along with Garland-Thomson (2004) who argues for a feminist disability studies theory, the author argues that when theorizing about the construction of a worker, which is a fluid identity, it is necessary to consider notions of gender along with ability and to note places where individuals resist stereotypes placed on them by the larger society. The women of this study resisted ideas of deafness as a “disability” and did things to show they were a linguistic minority and part of the Deaf community. Teaching, in certain contexts, was a place where they educated people about their deafness and became, in their words, “lifetime educators.” Those who worked in hearing offices developed strategies such as being lifetime educators, self-advocates, volunteering in these offices, and often denying a part of their Deaf identity.

While there has been a significant amount of research conducted on growth hormone (GH) in the field of medicine, very few studies have actually examined the experience from the vantage point of adults who were treated for short stature as children. On the basis of in-depth interviews with three women and two men, I explore the experiences of those who have firsthand knowledge of such treatment. What becomes clear in these narratives is that GH serves as both a normalizing and a stigmatizing force for the recipient. More broadly, this study seeks to contribute to the growing body of research on issues of physical appearance that plant the seeds for unequal treatment of individuals by society.

The disproportionate identification of learning disabilities among certain sociodemographic subgroups, typically groups who are already disadvantaged, is perceived as a persistent problem within the education system. The academic and social experiences of students who are misidentified with a learning disability may be severely restricted, while students with a learning disability who are never identified are less likely to receive the accommodations and modifications necessary to learn at their maximum potential. In addition to inconsistent definitions of and criteria for diagnosing students with learning disabilities that may result in misdiagnoses, it is feared that discrimination also plays a role. We use the Education Longitudinal Study (ELS) of 2002 to describe national patterns in learning disability identification by individual- and school-level characteristics. Our results indicate that sociodemographic characteristics are predictive of being identified with a learning disability. Whereas some conventional areas of disproportionality are confirmed (males and language minorities are more likely to be identified), differences in social class entirely account for black and Hispanic disproportionality. Discrepancy between the results of bivariate and multivariate analyses reaffirms the importance of employing sophisticated methodology in explorations of disproportionality.

Sharon N. Barnartt is professor and department chair in the Department of Sociology at Gallaudet University. She has coauthored two books: Deaf President Now: The 1988 Revolution at Gallaudet University (1995) and Disability Protests: Contentious Politics 1970–1999 (2000). She coedited Disability Studies Quarterly, Special Issue on Deafness, volume 18, issue 2, 1998, and the Journal of Disability Policy Studies: Special Issue on Women and Disability, volume 8, 1997. She has also presented papers and published widely in the areas of gender differences in socioeconomic status, disability policy issues, social movements in the deaf and disability communities, and disability in developing countries. She has been a board member and president of the Society for Disability Studies, member and chair of the American Sociological Association's Committee on the Status of Persons with Disabilities, and chair of the American Sociological Association's Disability and Society Section-in-Formation. She is a founder and coeditor of the Research in Social Science and Disability volume series.