The differences in activities and experiences of individual family members have for the most part been ignored. These studies routinely are characterized by gender insensitivity. That is, they ignore gender as a socially important variable, thereby overlooking the difference between mothers and fathers within the family. As examination of the literature reveals that there is an assumption, often unspoken, that mothers have the primary responsibility for caring for their children with disabilities. The literature also reflects the cultural stereotype of mothers a "natural" caregivers and assumes that women's primary orientation is toward family and motherhood. This both reflects and constructs how we see, understand, and interpret the lives of mothers of children with disabilities.
This article briefly outlines some of the assumptions about men and women at the basis of family support policies, and how stereotypical sex-role expectations influence the way services systems relate to mothers and fathers of children with disabilities. This article is an abbreviated version of an extended analysis of the role of gender in policy and practices directed toward families of children with disabilities (Traustadottir, 1988; 1991a; 1991b).
Rationales for Family Policy and Family Support Services
There are at least two major rationales behind family support policy that are based on assumptions that are problematic for women. The first rationale is economic, and asserts that family support saves money because it prevents costly out-of-home placements and may encourage families to take their children home from institutions and nursing homes. This rationale is supported by costs studies of services. When researchers compare the cost of residential placements and the cost of home care they find enormous savings when the care is provided within the family (Bradley, 1988; Governor's Planning Council on Developmental Disabilities, 1987). The second rationale is ideological: family support services are seen as supporting traditional American family values. One goal of family support services as a unit, keeping families intact and helping families to take care of their own.
These two rationales are widely used to convene policy makers and service providers to fund and provide family support services, and have been widely accepted as two of the most powerful arguments in favor of family policy directed toward families of children with disabilities.
A critical examination of these two rationales raises serious concerns about the underlying assumptions about the roles of mothers of children with disabilities. The first concern is related to the cost savings of family supports. Why do family support services save money? The most obvious answer is the care needed by their children at no public cost.
The other concern relates to the idea of "traditional family values." Traditional family values bring to mind the culturally sancitifed female role of caretaking and selfless giving. Traditional ideas and values about women's and men's roles within the family assign the responsibility for housework, child care and other caring work to women. Even today, women are expected to perform large amounts of unpaid work within the family. These traditional values also assume that women's primary orientation is toward family and motherhood, and that they have little commitment to paid employment. The reality today, however, is that the majority of women are trying to negotiate their caring role within the family with work outside the home.
An uncritical emphasis on these two rationales may lead to some serious dilemmas or conflicts. The questions must be raised: are we basing family support services on an outdated understanding of women's sex roles? and to what extend does current family policy assume and depend on the substantial and consistent input of women's unpaid work in the home?
Gender Stereotypes and Family Support Services
Cultural stereotypes of men and women also influence service practices and the way family support services are provided. Service providers have different views and expectations of mothers and fathers. The mother, who plays a central role in doing the caring work for her child with the disability, is typically also the main contact person for the service providers. Family support programs seem to have a certain idea about what mothers of children with disabilities "should be like," and these ideas reflect the cultural stereotype of the selfless giving mother who devotes her life to the welfare of her child and the family.
If the mother wants the services she cannot deviate much from what the professionals think she should be like. If she does, she risks being denied the services, and that can be devastating for a mother who desperately needs help. This creates a lot of pressure on the mother to conform to the professionals' ideas of a traditional mothering role.
The father is usually viewed differently by professionals working with the family. When a father is involved, his primary role is seen as being a supporter. This support role has at least three components. First, the father is expected to provide financial support and the economic resources needed to keep the child at home. Second, the father is expected to be supportive of the mother's dedication and devotion to the child and her caring work around the child and the family. The third part of the father's support role relates to his participation in the caring work within the home and decision making around the child. The mother is generally the one who searches for services and investigates programs. If the father takes an active part in discussing the options and making decisions about the child's service needs her is seen as "very supportive and involved." The same is true if the father takes part in some of the caring work within the home.
Human service professionals talk differently about fathers and mothers. When talking about the fathers they tend to describe what the father "is like." For example, if the father is involved with the child, participates in the caring work, has contact with, and cooperates with the professionals they think he is exceptionally wonderful and praise him for being "so involved" with the child. But if the father is not involved with the child, and has no contact with the professionals, then that is what the father is like. They say, "We cannot force the father."
While service providers and professionals do not see themselves as having authority over fathers and are reluctant to put serious demands or pressure on fathers, they have less reluctance to pressure the mother. They demand a certain level of cooperation and performance from her, and try to influence what she does and how she does things. This raises some serious concerns about the way family support and other professional services influence and control the lives of mothers who have children with disabilities.
Conclusion
Most family policy and practice within the disability field reflect
the cultural stereotype of mothers as the natural caregivers and assume
that women's primary orientation is toward family and motherhood. Policy
makers and service providers need to become aware of the stereotypical
assumptions underlying policies and practices. In particular, we need to
recognize gender as a critical issue when policy and practices are formulated,
instead of coming to families with an approach that ignores the issue of
gender and the difference between fathers and mothers, thereby perhaps
reinforcing women's subordinate position in society.