The first thing to note about this book is that it is set in 1970, on the cusp of the Disability Rights Movement, when words like “crippled” and “retarded” were thrown around with abandon. It is now, of course, the 21st century, and these words have rightfully gone the way of the n-word, although there are none too few people who seem to forget that. But, an instruction on appropriate language is fodder for another post.
Other than the language and the absence of smartphones, not much really dates this book as being set in 1970, thankfully. The story follows Jean, a teenager with cerebral palsy, as she embarks upon a summer stay at Camp Courage, a camp for children with disabilities. Like the camp’s name suggests, CC is meant to be a place where “everyone is a winner”, and everyone succeeds.
Jean is a “Crip in Norm clothing”, at least according to her cabin-mate, Sara, a Camp Courage veteran bent on revolution. Jean has done the telethon circuit, attends Norm school, has Norm friends, and is somewhat adrift among other disabled people. Sara, on the other hand, has always attended a “Crip” school, but will be transitioning to a Norm school for the coming year. Sara’s ideas about disabled people and their place in the world make Jean’s head spin.
To me, Jean and Sara are two sides to the same coin. Jean represents the disabled self before she comes to the realization that she is different from those she loves, and that, despite her numerous abilities, she will always be set apart. Sara is the disabled self after she has had this realization, has accepted herself, and now refuses to be limited by others’ perceptions of her.
There are several poignant moments in the book that resonated with me, which isn’t surprising as the author, Harriet McBryde Johnson, dealt with a degenerative neuromuscular disease and used a wheelchair. (Johnson passed away in 2008 at the age of 50.) These moments usually preface Jean coming to a new understanding of her reality, such as the night when Camp Courage holds its “carnival”. Sara refuses to play any of the games “until someone loses,” which, as the night progresses, Jean realizes will never happen because all the games are rigged.
When the games are rigged, does it make everyone a winner – or no one?…It is better that I didn’t get with the program this time. I believe in competition. The program seems to say that handicapped people aren’t up to it; we can only pretend to be winners. I don’t want to pretend. I want to achieve, really achieve. Or I will take my disappointments just like anyone else. (p. 137)
Sara often says what Jean doesn’t realize she thinks, or what many of us in the disabled community can’t quite seem to put into words: “If we cut the inspirational crap, they’d find a way to be who they are” (p. 146). Sounds like Sara might approve of my post on inspiration porn. Sara makes this assertion after the “powers that be” at the camp have vetoed the campers’ council’s choice of movie, Horse Feathers, in favor of perennial saccarhine fest, Pollyanna. Because nothing says “inspiration” more than a girl so cheerful most of us would want to shoot her in the face.
For me, the most heart-wrenching line came on the night of the camp’s talent show, in which the camp’s benefactors visit to see their good works paraded before them.
A little girl points at me. “What’s wrong with her?” A mom…pulls down the child’s hand and whispers something in her ear. The girl gawks more discreetly, out of the corners of her eyes, and I know I’ve just witnessed a child learning to gawk like a grown-up. (p. 169)
I emphasized the last sentence because it is so poignant. Anyone with an obvious physical disability has been in a situation just like this: A child stares or points or asks an uncomfortable question, and the parent shuts the conversation down before it begins. In my own experience, their answer is typically, “She’s sick,” as if a genetic mutation result in a bone anomaly is somehow contagious. Then, they pull the child away, and suddenly that child has learned how to stare “properly”.
Because, honestly, adults are worse than kids. Kids are curious; if you let them, they’ll ask questions and learn about your particular situation, and realize that all anyone – with or without a disability – wants is to be treated with respect. And they’ll go through life with an understanding of healthy interaction.
You can always tell the adults who didn’t get that opportunity as a child. They are the ones who stare without staring, as if we, the disabled, don’t know. As if we can’t feel their eyes, or don’t notice how, when we look up, their gaze is suddenly elsewhere. These are the ones taught to gawk like grown-ups.
Even though this book is almost 10 years old, and set nearly 50 years in the past, to me, it feels timeless. All of us who are disabled, whether from birth, from accident, or from the passage of time, eventually come to realize that, no matter how insular our lives, we don’t always fit in with those around us. No matter how much we are loved, no matter how sympathetic or empathetic our Norm family and friends are, they will never really understand our situation. Jean comes to this same conclusion in the final pages of her story.
I am going on a path of my own, a road they cannot take. I’ll be alone, a separate person, even if, physically, I remain as close to them as ever. I’ll take food from their hands, depend on them, live with them in love and harmony, but I will remain incomprehensible. Perhaps I will indulge them and let them think they understand, but they never will.
I have never felt more alone. I have never felt farther separated from my family. And in my whole life I have never loved them so much.