I was hesitant at the start. Those of you reading this blog know there are subtle feelings when discussing the experience of folks with disabilities. It’s a unique club. I’m pretty protective of it. Hence my hesitation.
The book was exactly what I expected it to be. A fictional idea of what folks who are non-disabled think life for a child who has a disability is like. It was full of crises, clear enemies, and moments of reflection. It has a tear jerker ending. The school gives Auggie an award and a standing ovation for his bravery.
I’ve got no issue with that. If that’s what people want to read, great. But I do take issue with the portrayal of other things in this book. The reality is, there is no standing ovation at the end for bravery. No one appreciates the bravery our children show every day.
Robert Rummel-Hudson, author of the book “Schuylers Monster,” describes the daily challenges parents of children with disabilities face:
“As parents of kids with disabilities, we step up to the big fights, and while they can be exhausting and definitely take their toll on us, I think in some way we prefer them to the alternative. The struggles that truly tear us down and leave us dispirited are the little ones, the tiny indignities that defy our long-developed skills for the Big Fight. They can't be confronted with a sword, and we're not necessarily adequately armed with flyswatters. We fear our children being eaten by alligators, only to discover that they are more likely to be devoured by little fish, one tiny bite at a time.”
“Wonder” tries to portray the big disability issues facing our kids as the hardest. But our truth is that the big hurdles are easier to deal with. It’s the little ones that are the most difficult. Things like doctor’s offices with no auto open doors, insurance billing, or special education programs without proper equipment. These issues are far harder to fix and to tolerate.
The book talks about one big character that makes Auggie’s life difficult. That to me is way, way wrong. Nothing looks at what created that enemy and why they flourished. The book presumes that mean kids exist to make fun of our children who have a disability. Taking that for granted bugged me the most.
The author establishes that it’s a cruel world. And that our children are victims of it. That we should celebrate their bravery instead of writing about what schools do to keep that kind of cruelty out.
In short, the book was fluff. It was a feel-good story written by someone who wanted to write a happy tearjerker. Our reality is so much more complicated.
You can read the author’s point of view https://www.npr.org/2013/09/12/221005752/how-one-unkind-moment-gave-way-to-wonder on why she wrote the book.
And check out the Navigating Daily Life on this website.
There are many benefits to bringing a friend or companion to your child’s IEP meetings.
Categories: Education & Schools