Families of children with disabilities experience challenges that other families do not face. They may experience stigma as a result of having a child with a disability and may perform health care and advocacy work for their children beyond that performed by other families. The extent of these additional concerns varies tremendously across families, depending upon the nature and severity of the children’s disabilities and the social context in which the meaning of the children’s disabilities is interpreted and acted upon. At the individual level, some children may have disabilities that affect their functioning slightly, while others may have disabilities that affect their functioning severely, across multiple areas, including physical, cognitive, emotional, and behavioral functioning. At a broader social level, some children with disabilities live in families and communities that attempt to eliminate social barriers that could result from disability, while others live in social contexts that do not strive to promote children’s full participation.
While it is important to acknowledge these ways in which children with disabilities and their families are ‘‘exceptional,’’ it is equally important to acknowledge that families of children with disabilities are in many ways just like other families. Over the past four decades, parents of children with disabilities in the US, UK, and Canada have sought recognition for the caring labor that they perform, and some have fought against the ways that some professionals, researchers, and public programs have treated them as pathological and in need of intervention.
Disability is often stigmatized in the way that Erving Goffman described in his 1963 book, Stigma: Notes on the Management of Spoiled Identity, and families may face what Goffman called ‘‘courtesy stigma’’ when individuals stigmatize the entire family because of the child’s disability. In its most severe form, this stigmatization of families may be found in Bruno Bettelheim’s 1967 book, The Empty Fortress.
There, Bettelheim presented his ‘‘refrigerator mother’’ theory of autism, which blamed mothers for their children’s autism. Less severe forms of courtesy stigma may also be found in social science research and in service systems that focus only or primarily upon families’ needs and weaknesses, ignoring their knowledge and strengths. Recent social research and public policy provide a more balanced view of families of children with disabilities, and of the children themselves, acknowledging that they face added concerns and stresses as a result of disability, but also documenting the capabilities, expertise, and strengths that children and families may bring to these challenges.
These changes in policy and professional attitudes regarding families of children with disabilities are the result of parental activism over the last 40 years. Children with disabilities and their families were largely invisible in public policy until the 1960s and 1970s, when the parents organized on behalf of their children, transforming the nature and location of therapeutic care and education for children with disabilities. Until the 1960s in the US and the 1970s in the UK, parents had to choose between keeping their children at home and not receiving any public services, or placing their children in residential institutions, called ‘‘schools’’ in the US and ‘‘long stay hospitals’’ in the UK (Read 2000; Leiter 2004).
In the UK, the thalidomide disaster and problems regarding vaccine damage created public concern regarding children with disabilities (Read 2000). Parents’ organizing began a little earlier in the US, in the 1960s and 1970s, when parents borrowed tactics from the Civil Rights Movement to fight for community based services that would allow them to keep their children at home. Most of those battles centered on public education, resulting in the US Congress passing the Education of All Handicapped Act in 1975, which is now called the Individuals with Disabilities Education Act (IDEA). Then in the 1980s, parents collaborated with professionals who provided services to children with disabilities and lobbied the US Congress to extend public services to children with disabilities from birth. This parent– professional collaboration resulted in the creation of additional community based public services, in substantial changes in the way that public programs describe families, and in additional legal rights for parents. There is now considerably more emphasis upon families’ strengths, knowledge, and capabilities in programs that serve children with disabilities. Parents also have more rights to participate in making decisions about their children’s health care and education. Parents’ uptake of those rights varies tremendously, and parents with higher levels of education are more likely to advocate for their children within service systems. While parental rights have been an important tool for families when advocating for their children within public programs, this rights based approach to social change has put the burden of creating change upon parents rather than upon the professionals within public programs who wield decision making authority.
In addition to advocacy work, families may also provide substantial health and therapeutic care to children with disabilities (Read 2000). Although fathers may perform some carework, most carework is performed by mothers, due to traditional gender roles that emphasize mothers’ provision of care to children and fathers’ economic support of the household. There is an important distinction here between the carework that mothers typically provide, such as taking care of children when they have colds, etc., and the additional, atypical carework that mothers provide that is associated with their children’s disabilities. Both the extent and scope of carework are greater within families of children with disabilities. Within a sample of mothers of children with special health care needs, Leiter et al. (2004) found that almost one fifth of the mothers performed 20 hours or more of carework per week, doing therapies, dressing changes, care of feeding or breathing equipment, and so on. Mothers’ provision of carework to their children with disabilities can also have other ripple effects within the family. For example, mothers may cut down their working hours or stop working altogether, and families may have less income as a result.
Much of the current knowledge regarding families of children with disabilities focuses upon the early parts of a family’s life course, when the child is still a minor, with few exceptions (such as Krauss & Seltzer 1997). Far less is known about families of children with disabilities later in life, providing a rich area for future sociological research.
- Featherstone, H. (1980) A Difference in the Family: Life with a Disabled Child. Basic Books, New York.
- Krauss, M. W. & Seltzer, M. M. (1997) Life Course Perspectives in Mental Retardation Research: The Case of Family Caregiving. In: Burack, J. A., Hodapp, R. M., & Zigler, E. (Eds.), Handbook on Mental Retardation and Development. Cambridge University Press, New York.
- Leiter, V. (2004) Parental Activism, Professional Dominance, and Early Childhood Disability. Disability Studies Quarterly 24.
- Leiter, V., Krauss, M. W., Anderson, B., & Wells, N. (2004) The Consequences of Caring: Maternal Impacts of Having a Child with Special Needs. Journal of Family Issues 25: 379 403.
- Panich, M. (2003) Mothers of Intention: Women, Disability, and Activism. In: Stienstra, D. & Wight-Felske, A. (Eds.), Making Equality: History of Advocacy and Persons with Disabilities in Canada. Captus Press, Concord, Ontario.
- Read, J. (2000) Disability, the Family and Society: Listening to Mothers. Open University Press, Philadelphia.
- Robinson, C. & Stalker, K. (1998) Growing Up with Disability. Jessica Kingsley, New York.