Reframing the meaning of disability to families: the embrace of paradox

In our society, families turn to medical science and health practitioners for assistance when a family member becomes disabled. In the cases of chronic illnesses and developmental disabilities, health professionals may focus interventions on the disease processes, feeling unprepared to deal with the broader issues families struggle with in managing disability. In addition, collaboration between professionals and parents may be strained when family's discourse is viewed as unrealistic, overly emotional, exceedingly optimistic and confusing by professionals. Using in-depth case studies, this qualitative research examined the daily occupations and subjective well-being of six Mexican-origin mothers parenting children with disabilities. Emergent findings demonstrated that these mothers do express apparently contradictory emotions of grief and joy, hope and fear that influenced their subjective well-being. The meaning of the mothers' contrary statements was illuminated in a life metaphor, the embrace of paradox. The embrace of paradox was the management of the internal tension of opposing forces between loving the child as he or she was and wanting to erase the disability, between dealing with the incurability while pursuing solutions and between maintaining hopefulness for the child's future while being given negative information and battling their own fears. The tensions created by the paradox promoted an internal striving to maintain a tenuous hopefulness despite "crashes" in their maternal work, and promoted an extension of maternal skills working toward a hopeful life trajectory for the mother and her child. In the embrace of paradox mothers created a positive bias and regained a sense of control that fueled their optimism in maternal work.