Happy children: Disability or not
Studies find children with disabilities rate their quality of life no differently than other kids
Photo by William Suarez
Two major 2007 studies challenge the assumption that childhood disability means a less happy or satisfying life.
In a study of 500 European children with cerebral palsy published in The Lancet, researchers found eight-to-12-year-olds rated their quality of life no differently from children without disabilities. They also found that degree of impairment did not correlate with how children measured their quality of life in most areas.
The children in The Lancet study — part of the Study of Participation of Children with Cerebral Palsy Living in Europe (SPARCLE) — answered questions about their physical and mental wellbeing, school environment, relationship with parents, acceptance by peers, and how they felt about themselves and their bodies.
The study suggests that children with cerebral palsy perceive their lives to be as rich as their able-bodied peers.
“Is it surprising that subjective quality of life of children with cerebral palsy is similar to that of the general population?” the SPARCLE researchers ask in The Lancet article. “Possibly, from the perspective of a non-disabled adult imagining what it would be like to be disabled, but probably not from the perspective of a child whose sense of self from birth incorporates their impairment and who embraces growth, development and living with the same excitement as most children.” Few prior studies have looked at the quality of life of children with disabilities. Those that did relied on parent reports or used measures that equated happiness with a child’s functional abilities: what they could “do.”
The SPARCLE study asked the children themselves to rate their happiness and wellbeing. A similar study of quality of life in about 200 Canadian teenagers with cerebral palsy — published last year in Developmental Medicine and Child Neurology — found that participants’ self-reported quality of life was not linked to their abilities or degree of disability. “It’s important to separate the disorder from the person, and not make assumptions about what life must be like for that child or their family,” says Dr. Peter Rosenbaum, the Canada Research Chair in Childhood Disability who led the Canadian study.
Both studies, Peter says, challenge the assumption that “disability equates to loneliness, depression, loss and, in the end, a lesser quality of life.”
The SPARCLE researchers come to similar conclusions. “Pity and sorrow should not be directed to disabled children because our findings indicate that they experience most of life as do non-disabled children,” they write.
Instead, efforts to change attitudes and enable children with disabilities to participate in what matters most to them are critical. “Maximum effort is needed to support social and educational policies that recognize the similarity between the lives of disabled children and those of other children, and that ensure their right as citizens, rather than as disabled children, to participate fully in society.”