David McConnell, PhD, Professor and Director, Family and Disability Studies Initiative, University of Alberta, www.fdsa.ualberta.ca
Researchers have focused a great deal of attention on family adjustment and adaptation to children with disabilities. The traditional and still dominant approach to research in this field starts out with the assumption that having a child with disabilities is a ‘disturbance’ or ‘perturbation’, and then focuses on stress and coping processes, and what are usually presumed to be ‘outcomes’ for other family members. Many studies have investigated stress and psychopathology among mothers [and to a far lesser extent, fathers and siblings] of children with disabilities, the stress-buffering role of social support, and the utility of various coping strategies. This research has had a number of positive impacts. It has, for instance, helped justify services such as early intervention, in-home help, psycho-educational programs for parents and respite care.
A concern is that much of the research in the field assumes that having a child with disabilities is a disturbance and a tragedy. [Assuming that having a child with disabilities is a disturbance is not the same as assuming that having a child with disabilities is a tragedy. A disturbance is merely an event or situation occasioning change or adaptation: Losing your home to a flood is a disturbance, but so too is winning the state lottery.] Consequently, researchers have, until quite recently, focused almost exclusively on measuring what are usually presumed to be the ill-effects of having a child with disabilities (e.g., heightened maternal stress, marital disruption). Few studies have attempted to rule out plausible alternative explanations for heightened levels of maternal stress and other negative ‘outcomes’; and, few studies have explored the positive impact of having a disabled child.
Another, perhaps even more fundamental concern is that by framing ‘the problem’ as one of family adaption to disability, the traditional approach to research has produced limited insight into the adaptation of families with disabled children. Moreover, by reducing the experience of raising a child with disabilities to ‘stress and coping’ (i.e., for the purposes of research), the necessary context for understanding why these families may be stressed is lost. There is however growing recognition that families raising children with disabilities are faced with the same tasks and challenges as families with non-disabled children: they are families first. All families, for example, have to make a living, balance the inevitably competing needs and interests of family members, and manage interactions with ‘outsiders’ to ensure that the proper impression of the family is maintained. Yet, comparatively few studies have shed light on how families raising children with disabilities meet such ‘normative’ challenges. And few studies have investigated what it means to have a child with disabilities in this context, i.e., in light of the everyday challenges and accomplishments of ‘normal’ family life.
By framing the problem as one of family adaptation to having a child with disabilities and by making the dubious assumption that having a child with disabilities is a tragedy entraining lifelong hardships and by treating the social and ecological context in which families live as a background given, the traditional approach to research in this field has certain predictable outcomes. To some extent the sorts of problems that are identified and, in turn, the sorts of solutions that are proposed are pre-determined. Specifically, the traditional approach quite naturally leads to proposals for ‘special services’ aimed at modifying or reforming the individual child, caregiver and/or family. The concern is that the traditional approach potentially precludes consideration of social-ecological constraints and resources that families raising children with disabilities may need in order to meet the normative, everyday adaptive challenges they face. For example, families raising children with disabilities no doubt need, but may have unequal access to, the same kinds of resources that most other families need in order to successfully juggle work and family demands, such as meaningful and flexible employment, comprehensive health insurance, and affordable childcare options.