Narrating disability, narrating religious practice: reconciliation and fragile X syndrome.
Moms of kids with fragile X often reframe the diagnosis as a divine blessing, and joining that narrative builds rapport.
01Research in Context
What this study did
Marsha et al. (2010) talked with mothers who have a child with fragile X syndrome.
The team used open interviews to learn how moms make sense of the diagnosis.
They wanted to see if faith stories helped families cope.
What they found
Most moms told a religious reconciliation story.
They said the child was a blessing or part of God’s plan.
This story helped them feel hope and purpose.
How this fits with other research
Lalvani (2008) saw the same meaning-making in Down syndrome moms, but they used culture instead of church.
Howlin et al. (2006) and McCarthy et al. (2006) showed these moms feel high stress; Marsha explains one way they soothe it.
Raspa et al. (2014) later counted the same families and found high life quality, backing up that the faith story works.
Why it matters
When you meet a fragile X caregiver, expect talk of fate, blessing, or God’s plan.
Mirror that language in your notes and chats.
It builds trust and keeps moms engaged in therapy.
If you hear guilt or anger under the faith talk, link the family to a parent group or chaplain so the story stays helpful, not harmful.
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02At a glance
03Original abstract
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.
Intellectual and developmental disabilities, 2010 · doi:10.1352/1934-9556-48.2.99