Narrating disability, narrating religious practice: reconciliation and fragile X syndrome.
This article examines the place of religion in the narratives of mothers of children with fragile X syndrome. In semistructured interviews, a majority of women combined narratives of religious practice with illness narratives, interpreting their children's disabilities within a religious framework. Informed by Arthur Frank's (1995) concept of "wounded storytellers," the authors articulate a reconciliation narrative that mothers commonly used to describe their transition from viewing disability as a burden or challenge to seeing it as a blessing, or as a part of God's purpose or plan for their lives. The authors discuss the significance of narrative for better understanding religious perspectives on disability and conclude with the implications of these findings for practitioners and future research.
Michie
Marsha
M
Center for Genomics and Society, University of North Carolina-Chapel Hill, 27599-7240, USA. michie@unc.edu
Skinner
Debra
D
D000223:Adaptation, Psychological; D000328:Adult; D001007:Anxiety / Q000175:diagnosis / Q000523:psychology; D017028:Caregivers / Q000523:psychology*; D002648:Child; D002668:Child Rearing; D002675:Child, Preschool; D017281:Cost of Illness; D003863:Depression / Q000175:diagnosis / Q000523:psychology; D019988:Children with Disabilities / Q000523:psychology*; D005260:Female; D005600:Fragile X Syndrome / Q000235:genetics / Q000523:psychology*; D006580:Genetic Carrier Screening; D006801:Humans; D007223:Infant; D007406:Interview, Psychological; D008297:Male; D008875:Middle Aged; D009035:Mothers / Q000523:psychology*; D033262:Narration; D012069:Religion and Psychology; D012944:Social Support; D055815:Young Adult