Quality of Life

There’s a new post on Love That Max, which is one of the more well-known special needs/CP blogs. She posts about a study in the Lancet which reports that adolescents with cerebral palsy self-report similar levels of quality of life as “able-bodied” kids. Obviously, the study only included children who were able to report. But it’s interesting.

What does that mean? It means I worry a lot for nothing. It means that many kids with cerebral palsy are enjoying life just as much as their siblings, cousins, uncles etc. who don’t have CP. The only area where they didn’t report similar quality of life? Friendships and socialization.

I always think about how much stigma there is associated with disability. We live in a world where there are people who believe that children would be better off dead than disabled. That prejudice is, if this study is in indication, so far off the mark. It’s based on unsubstantiated stereotypes about what quality of life means. I wonder if we’ll ever reach a day where a diagnosis of disability like CP won’t be that big a deal. I don’t expect anyone to jump for joy on finding their child has had a stroke or a brain hemorrhage. But I hope we reach a time when it isn’t met with dark somber talks and an immediate listing of everything possible secondary diagnosis that might happen now that your child has a brain injury. Maybe instead doctors will say: “You know, I won’t lie, this is going to a be a lot of work, a road less travelled, and very hard at times. But check out this study from the Lancet! Things will probably be okay!” I expect many other serious, and sometimes debilitating, diagnoses are met that way, because they don’t carry the stigma of physical and possibly intellectual disability (ranging from mild learning disabilities to significant delays) associated with CP. Parents should be told that these children, at least the ones who can tell us, are happy with their lives. But not in some sort of platitudinous way about how they’re always happy. That’s not what the study says. But they’re about as happy as most other kids.

If we lived in a world where there was less stigma associated with disability, maybe the friendship pieces and socialization would fall into place. How often have my able-bodied children approached kids with disabilities and reached out to them? Not often enough. And it’s not something as a parent, that I have encouraged enough. I have some work to do there, and so do all of us. My child is lucky – she will have her siblings. Her twin opts for no special treatment. B is more than ready to smack C over the head with a block when she reaches out to paw a toy B is playing with. But she’ll need more than that, in the long run.