Congenital Disabilities

by

Rosalyn Benjamin Darling

• LAST REVIEWED: 23 August 2017
• LAST MODIFIED: 23 August 2017
• DOI: 10.1093/obo/9780199791231-0137

Introduction

Congenital disabilities are those that are present at birth. Because the nature of their acquisition differs from that of disabilities acquired later in life, the sociological issues involved are different as well. This introduction will include a brief discussion of the biomedical nature of such disabilities but will focus on the sociological implications of disability that is present early in life. From a biological or medical perspective, congenital disabilities include those that are the result of genetic inheritance or mutation or of environmental factors during pregnancy or the perinatal period, such as the mother’s alcohol intake or oxygen deprivation during delivery. Genetically based impairments include conditions such as Down syndrome and other chromosome-linked forms of intellectual disability; syndromes that affect appearance, such as dwarfism; and some forms of blindness and deafness. Environmentally induced impairments include some instances of spina bifida, limb deformities (such as those connected with the drug thalidomide), fetal alcohol syndrome, and other conditions. A common congenital impairment with a variety of possible causes is cerebral palsy. Most childhood disability is congenital. Whether congenital or not, visible impairments may create sociological consequences for those who have them. These consequences include stigma and associated interactional difficulties, lack of access to certain locations and situations, and economic constraints, among others. Unlike disabilities acquired later in life, however, congenital disabilities create special issues for families. These include obtaining diagnostic and prognostic information from professionals and ethical decision making in the case of life-threatening conditions. Such decision making is related to perceptions regarding the quality of life of affected children. Although they face many barriers in their quest for “normalization,” most families of children with congenital disabilities eventually find the services and supports they need. The children, as well, learn to negotiate their environments to “fit in” with “normal” society. In adulthood, some individuals move beyond “normalization” and come to adopt the view associated with the disability rights movement that disability is a normal form of human variation and that society needs to change to accommodate individual differences. Studies of children with congenital disabilities suggest that their quality of life and self-esteem generally do not differ significantly from those of their nondisabled peers.

General Overview of Societal Reactions

As Goffman 1963 and others have shown, the most pervasive attitude toward disability in modern Western society has been stigma, and individuals with congenital disabilities have commonly been discredited and relegated to a morally inferior status. However, attitudes toward disability have varied both historically and geographically. Wright 1983 and other works provide examples from primitive societies of divergent reactions to disabled newborns ranging from infanticide to special protection, and Safilios-Rothschild 1970 shows that attitudes in more modern societies also vary according to factors such as level of economic development. Even within societies, stigma has varied in relation to race, gender, socioeconomic status, and other characteristics (see, e.g., Graf and Blankenship 2007; Westbrook, et al. 1993). In addition, the nature of the disability is related to the presence and degree of stigma (Elliott, et al. 1982). Beginning around 1980, with the growth of the disability rights movement, technological advances, and other factors, stigma-based views have been increasingly rejected. Longmore 2003 traces some of the historical events that have contributed to changing views. Fine and Asch 1988 and many other works argue that people with disabilities are no longer powerless victims; they suggest a minority-group perspective to replace older stigma-based views. However, stigma continues to exist to some extent in modern society.

• Elliott, Gregory C., Herbert L. Ziegler, Barbara M. Altman, and Deborah R. Scott. “Understanding Stigma: Dimensions of Deviance and Coping.” Deviant Behavior 3.3 (1982): 275–300.

  DOI: 10.1080/01639625.1982.9967590

  An article that addresses variations in stigma. The authors examine the dimensions of visibility, pervasiveness, clarity, centrality, relevance, salience, responsibility for acquisition, and removability. Available online for purchase or by subscription.

• Fine, Michelle, and Adrienne Asch. “Disability beyond Stigma: Social Interaction, Discrimination, and Activism.” Journal of Social Issues 44.1 (1988): 3–21.

  DOI: 10.1111/j.1540-4560.1988.tb02045.x

  The introductory essay in a special issue devoted to changes in attitudes toward disability. The authors argue that stigma-based views that regard people with disabilities as victims are being replaced by views based on empowerment. Available online for purchase or by subscription.

• Goffman, Erving. Stigma: Notes on the Management of Spoiled Identity. Englewood Cliffs, NJ: Prentice-Hall, 1963.

  The classic and most-cited work on attitudes toward people with congenital disabilities and other devalued conditions. Goffman introduces concepts such as “discreditable” and “discredited,” based on the visibility of a potentially stigmatizing trait, and focuses on interactions between stigmatized individuals and “normals.” This work has been cited in virtually every sociological study of individuals with disabilities.

• Graf, Noreen M., and Charlene J. Blankenship. “Living on the Line: Mexican and Mexican American Attitudes toward Disability.” Rehabilitation Counseling Bulletin 50 (2007): 153–165.

  DOI: 10.1177/00343552070500030301

  An example of a study exploring the relationship between cultural diversity and attitudes toward disability. The authors found that the Mexican Americans in their study were not homogeneous in their attitudes. They caution against cultural stereotyping. Available online for purchase or by subscription.

• Longmore, Paul K. Why I Burned My Book and Other Essays on Disability. Philadelphia: Temple University Press, 2003.

  A collection of essays that document the emergence of the disability rights movement and the empowerment of people with disabilities. The book also includes essays on the stereotypical ways in which disability is viewed in the media.

• Safilios-Rothschild, Constantina. The Sociology and Social Psychology of Disability and Rehabilitation. New York: Random House, 1970.

  The first book to examine societal reactions to disability in depth. The author looks at structural and cultural societal characteristics that result in both positive and negative attitudes toward disability.

• Westbrook, Mary T., Varoe Legge, and Mark Pennay. “Attitudes towards Disabilities in a Multicultural Society.” Social Science & Medicine 36.5 (1993): 615–623.

  DOI: 10.1016/0277-9536(93)90058-C

  An Australian study showing that attitudes toward disability vary by ethnic background. Those of German descent expressed the greatest acceptance of people with disabilities, and those of Arabic descent expressed the least. Available online for purchase or by subscription.

• Wright, Beatrice A. Physical Disability: A Psychosocial Approach. New York: Harper & Row, 1983.

  DOI: 10.1037/10589-000

  A classic text that includes cross-cultural examples of reactions to disability. One of the first books to view disability from a psychosocial, rather than a biomedical, perspective.