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Contact: Roger Martin, KU Center for Research, (785) 864-7239

KU professors say spirituality important for families of children with disabilities

LAWRENCE -- Many families whose children have disabilities find in faith and spiritual practices a way to endow the disability with meaning, according to University of Kansas social scientists.

But these families' experiences with organized religion are mixed, say Denise Poston, research associate for the Beach Center on Disability, and Ann Turnbull, co-director of the center.

In interviews with 137 people who have disabilities and with their family members, Poston said, she was struck by the intensity of comments about the importance of spiritual and religious practices.

"People might say that having a job is important to the family˙s well-being, but in a matter-of-fact way," Poston said. "But there is an intensity in their voices when they say, 'My life wouldn˙t be anything without faith.' "

Poston and Turnbull's study appears in the June issue of the journal Education and Training in Developmental Disabilities.

Interviews were conducted in New Orleans; Granville County, N.C.: and Kansas City, Kan. Most of the children had moderate to severe disabilities.

The researchers tried to get a diverse sample of people, Poston said; participants included 64 African-Americans, 41 European-Americans and 22 Hispanics. Thirty-seven of the 137 were from families with incomes of less than $25,000, 38 from families with incomes between $25,000 and $50,000 and 24 from families with incomes over $50,000. Information was missing on other interviewees.

Those surveyed were asked what thoughts came to mind when they heard the words "family quality of life," what helped things to go well in the family when everything ran smoothly and what things created tough times.

Those who mentioned spirituality or religion as crucial to their quality of life commented on two aspects of it -- having beliefs and taking part in religious communities.

Those surveyed "spoke very passionately" about the effect of belief on quality of life, Poston said. They emphasized having faith in something greater than themselves and in using prayer. Poston said that even more important to their peace of mind was finding, through spiritual involvement, the ability to give meaning to the disability.

"About half of the families who shared perspectives on their spiritual life spoke about how they used their faith as a way to make some sense of having a child with a disability," Poston says.

For some family members, religious communities were a refuge, a place where the child was wholly accepted.

One parent said, "Once she walks in the door she can just about do anything she want to do. She goes straight to the front, she can sit on the organ. She just sits there, long as the organ's playing. She gets up once it stops and (will) go and sit down."

But an equal number of parents spoke about difficulties encountered in church.

"There's a lot of people that don't know how to deal with your autistic child," one mother said. "And I hate to say it, and I have a lot of work to do, but I will have to show them how to really get religious."

In their paper, Poston and Turnbull list resources that families and organizations can use to guide them in making religious and spiritual activities more accessible to children with disabilities. Poston recommends the Religion and Spirituality Division of the American Association on Mental Retardation at http://www.aamr.org/Groups/div/RG/index.php.

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