Families and the Handicapped in Northern Jordan

Families and the Handicapped in Northern Jordan* BY: WILLIAM C. YOUNG** The image of the Arab family that is frequently presented in the ethnographic literature (cf. Fakhouri, 1984; Geertz, 1979:333) is that of a large household containing many nuclear families whose members interact frequently and intensively and share the burdens of daily life. Such an image may not be wrong so much as it is overgeneralized. When we perceive Arab families through this image we tend to recall the interests and opportunities - wedding celebrations, religious holidays (cf. Antoun,1968), defense of family honor (cf. Antoun,1972) - which bring family members together and forget the issues - politics and inheritance (cf. Shunnaq's article in this issue) - which can drive them apart. One such divisive factor can be misfortune; more specifically, the development of immobilizing handicaps in a family's children. One would expect that handicaps can generate stress and division in Arab families just as they do in families in other parts of the world. Studies of families with handicapped children outside of the Arab world have confirmed the common-sense assumption that such families experience greater stress than families whose children are not handicapped (McKaig et al., 1986; Murphy 1982). Many such studies (ex. Covert, 1988; Singer and Irvin,1989) are designed to identify the policy implications of home care for the handicapped and make recommendations about how the families of the handicapped should be supported by public agencies. Almost no research has been done on how - or, indeed, A hether - Arab families cope with childhood handicaps. Another problem with these studies is that they tend to assume that the burden of caring for a handicapped child - and the stress that this burden generates - is borne by the family as a whole, that is, as a unit undifferentiated by age and gender. As Traustadottir puts it, most of the literature on care for the handicapped treats the family "as the smallest unit of analysis..." and "routinely.. ignore gender as a socially important variable, thereby hiding the differences between mothers and fathers within the family..." (Traustadottir 1991:212). More recent studies in England (Glenndinning, 1993; Parker, 1990) and the United States (Marcenko and Meyers, 1991:187) demonstrate that mothers take on most of the day-to-day care of handicapped children and get very little practical support from their husbands. These studies show that, in these Englishspeaking societies at any rate, it is mothers, not "families," who actually do the work. Whether this is true of Arab societies has hardly been explored. Some other important questions are: how much does social support reduce the burden on the mothers and families of the handicapped, and what kinds of support are needed? Again, studies in England and the United States (Bresford, 1994; Gallagher et al., 1983; Havermans and Eiser, 1991) make it clear that mothers who have the support of their spouses, relatives, and neighbors cope with stress more successfully and can better care for the child. "Social support" in this context can mean many things. In the literature on the handicapped child, however, it is generally defined as either instrumental, informational or emotional. Instrumental support "refers to concrete assistance such as labor or money..." while informational support "consists of advice or information." Emotional support involves expressing concern and listening to the primary caretaker (Marcenko and Meyers, 1991:186). Who are a mother's main sources of support? As mentioned above, English and American mothers of handicapped children get little instrumental support from anyone. Fathers of handicapped children generally provide little instrumental support for mothers of such children, and divorced or separated fathers offer almost none. Even under the best of circumstances (ex. when the father remains in the home and does not seek a divorce afier the child becomes handicapped) the quantity of instrumental support provided by the father is limited (Marcenko and Meyers, 1991:189) Fathers do provide emotional support, however, and women whose husbands provided little instrumental support expressed satisfaction with spouses who supported them emotionally. …