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This chapter reviews qualitative research on parenting children with disabilities published over the last 50 years to explore whether shifts in academic discourse and changes in professional training have affected research on parenting and/or the experiences of parents who are the subject of such research.

An extensive literature search was conducted, and 78 peer-reviewed, qualitative studies on the experience of parenting a child with a disability were included in the sample. Themes were extracted from the reviewed literature and compared across decades.

The findings of the present review suggest that some aspects of the parenting experience have changed very little. In particular, parents continue to experience negative reactions such as stress and anomie, especially early in their children’s lives, and socially imposed barriers such as unhelpful professionals, and a lack of needed services continue to create problems and inspire an entrepreneurial response. In addition, stigmatizing encounters with others continue to be a common occurrence. In contrast to earlier decades, studies conducted in more recent years have begun to use the social model of disability as an analytic frame and also increasingly report that parents are questioning and challenging the concept of “normal” itself.

Additional improvements are needed in professional education and services to reduce the negative reactions experienced by parents of children with disabilities.

The findings of this meta-analysis can serve as a guide to future research on parenting children with disabilities.

This paper presents an updated summary of a meta-analysis of qualitative research on parenting children with disabilities published over the last 50 years. In this summary, we explore whether shifts in academic discourse and changes in professional training are reflected in research on parenting and/or the experiences of parents who are the subject of such research. The detailed findings of the original analysis were published in Volume 7 of Research in Social Science and Disability.

An extensive literature search was conducted, and 79 peer-reviewed qualitative studies on the experience of parenting a child with a disability were included in the sample. Themes were extracted from the reviewed literature and compared across decades.

The findings of the present review suggest that some aspects of the parenting experience have changed very little. In particular, parents continue to experience negative reactions such as stress and anomie, especially early in their children’s lives, and socially imposed barriers such as unhelpful professionals and a lack of needed services continue to create problems and inspire an entrepreneurial response. In addition, stigmatizing encounters with others continue to be a common occurrence. In contrast to earlier decades, studies conducted in more recent years have begun to use the social model of disability as an analytic frame and also increasingly report that parents are questioning and challenging the concept of “normal” itself.

Additional improvements are needed in professional education and services to reduce the negative reactions experienced by parents of children with disabilities. The findings of this meta-analysis can serve as a guide to future research on parenting children with disabilities.

This paper was written to show that what has come to be called the social model of disability appeared as the primary analytical framework in research published by sociologists in the 1960s and 1970s. Although the name and constructs of the model have changed over the years, its roots are clearly present in the earlier sociological literature. The author looked for evidence of these roots.

The paper’s findings are based on a literature review and synthesis. For illustrative purposes, four publications were selected as case examples.

All of the components of the social model – locus of the problem in society, activism as a solution, and consumer control – appeared in the earlier literature. In addition, these studies conducted in the 1970s and earlier distinguished between the individual and social model, although they used different terminology.

Researchers need to go beyond simple electronic literature searches in order to find books and articles written prior to 1980. Otherwise, they may be “reinventing the wheel.”

Most recent literature in disability studies acknowledges a debt to the social model theorists of the 1990s. This paper suggests that their debt extends back much further and that the social model is part of a long tradition of sociological thinking.

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.

In Great Britain in the 1960s and 1970s, a physician (Lorber, 1971) developed criteria that would exclude from treatment many babies born with spina bifida (“open spine”) based on what he perceived to be a poor projected quality of life. In the US, the parameters of the modern debate developed around the case of “Baby Doe,” a child born in the early 1980s with Down syndrome and duodenal atresia, an intestinal blockage. Without surgery to correct the blockage, the baby would not survive. Because the infant also had Down syndrome, which typically includes some degree of intellectual disability, the parents decided not to consent to the surgery. The parents’ decision was met with outrage by disability advocacy groups, as was a similar decision a few years later to forego surgery to repair a myelomeningocele (spina bifida) in the case of “Baby Jane Doe.” The publicity surrounding these and other non-treatment decisions resulted in the US in the passage of the Child Abuse Amendments of 1984, largely through the efforts of then Surgeon General C. Everett Koop. This legislation effectively mandated universal treatment of newborns with disabilities. However, several court cases since have resulted in rulings allowing parents to discontinue life support based on quality-of-life issues, resulting in the establishment of state standards in addition to the federal ones (Clark, 1994). Still, the norm in the case of Down syndrome and spina bifida, two of the most common childhood impairments apparent at birth, continues to support the treatment of virtually all children born with these conditions. As a result, most post-natal decision making today involves infants with other, often more serious, impairments that result from perinatal complications or from extreme prematurity. Even in those cases, a bias toward treatment seems to prevail (Levin, 1990).

Like all tribes, bioethics has its own origin myths. According to these myths, bioethics emerged in the latter half of the twentieth century when new technologies and scientific developments challenged the norms that had traditionally governed clinical practice. Theologians, philosophers, clergy, judges, lawyers, journalists and ordinary people – the “strangers at the bedside” in David J. Rothman's memorable phrasing – began to take an interest in moral matters that previously had been the realm of physicians alone. Codes of research ethics were formulated in response to the Nazi atrocities; hospital ethics committees were established in sensitivity to the emerging notion of “patients’ rights.” Bioethics was born.

The study of birth defects has increased in importance in recent years because the rate of infant mortality due to other causes (such as infection and nutritional disease) has decreased more quickly than has the rate of deaths due to birth defects. Today, abnormalities are detected in approximately 3 percent of newborn humans, and twice as many prenatally acquired defects are found in children after infancy as are discovered at birth. In addition, many of the more than 500,000 miscarriages and stillbirths that occur each year in the United States are due to abnormal fetal development.

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.