REFRAMING THE MEANING OF DISABILITY TO FAMILIES - THE EMBRACE OF PARADOX

In our society, families turn to medical science and health practition ers for assistance when a family member becomes disabled. In the cases of chronic illnesses and developmental disabilities, health professio nals may:focus interventions on the disease processes, feeling unprepa red to deal with the broader issues families struggle with in managing disability. In addition, collaboration between professionals and pare nts may be strained when family's discourse is viewed as unrealistic, overly emotional, exceedingly optimistic and confusing by professional s. Using in-depth case studies, this qualitative research examined the daily occupations and subjective well-being of six Mexican-origin mot hers parenting children with disabilities. Emergent findings demonstra ted that these mothers do express apparently contradictory emotions of grief and joy, hope and fear that influenced their subjective well-be ing. The meaning of the mothers' contrary statements was illuminated i n a life metaphor, the embrace of paradox. The embrace of paradox was the management of the internal tension of opposing forces between lovi ng the child as he or she was and wanting to erase the disability, bet ween dealing with the incurability while pursuing solutions and betwee n maintaining hopefulness for the child's future While being given neg ative information and battling their own fears. The tensions created b y the paradox promoted an internal striving to maintain a tenuous hope fulness despite,''crashes'' in their maternal work, and promoted-an ex tension of maternal skills working toward a hopeful life trajectory fo r the mother and her child. In the embrace of paradox mothers created a positive bias and regained a sense of control that fueled their opti mism in maternal work. (C) 1998 Elsevier Science Ltd. All rights reser ved.