Mothers and their disabled children: refining the concept of normalization.

Normalization refers to behaviors and intentions of the disabled to integrate into society by living life as do those without a disability. Although normal is assumed to be a desired state, the concept has not been explored from the perspective of disabled children and mothers and other family members. The objective of this study is to determine "what is normal" from the perspective of the person with the disability. Participant observation was conducted in a 6-day summer camp for 17 children with chronic, severe, life-threatening physical disabilities. The children normally received home care and were ventilator dependent. Data consisted of observations, field notes, photographs, and videos. To obtain data about the children's home life, audiotaped telephone interviews with their primary caregiver (16 mothers and 1 father) were conducted before and after the camp. This group had two distinct social reference groups: the "disabled world" of the disabled-as-normal and the "outside" world of the everyday-as-normal. Mothers identified with both reference groups according to the child's needs, abilities and capabilities, and the risk involved. Children with disabilities who normalize compare their abilities and capabilities to identify both within a disabled world ("like me") and the outside world, according to their needs. Normalization includes processes of identification with both the cultural dominant perceived as normal (with whom these children could identify cognitively) and handicapped children (with whom these children could identify both physically and cognitively).