I am not Hazel Grace Lancaster. She has a certain gracefulness (ha) that I will never have. To illustrate this, I provide the following scene. Hazel is sitting on a bench at the mall when:
"[T]his little girl with baretted braids appeared in front of me and said, 'What's in your nose?' And I said, 'Um, it's called a cannula. These tubes give me oxygen and help me breathe.' Her mother swooped in and said, 'Jackie,' disapprovingly, but I said, 'No no, it's okay' because it totally was..." (46).
I've had my share of encounters with random children. They stare and point and ask their parents what's wrong with me. My mother always encouraged parents to tell their children to ask questions rather than stare, the way Jackie does in this passage.
I don't like that either. Maybe because I moved through my school days with little attention given to my differences by my classmates--and still do--the tendency of strangers to blatantly notice bothers me. In Stigma: Notes on the Management of Spoiled Identity sociologist Erving Goffman quotes a young woman who "suddenly realized that I had become so self-conscious and afraid of strange children that, like animals, they knew I was afraid and the mildest and most amiable of them were automatically prompted to derision by my own shrinking and dread" (17).
I know this terror. I get it in line at airports. I refuse to go into Wal-Mart. And yet, often, children are staring at me because they like Henry my monkey hat, or my tendency to have pink in my hair. I have become tainted by the ones who ask their parents if I am a monster, who wonder aloud why my arms are like that or who--the one true memory I have of childhood teasing--whisper to a friend "she looks old" while I pass on my way to the cafeteria.
And why? Why can't I accept, as Hazel Grace does, that children are naturally curious? I have a tendency to let my gaze linger on other people with disabilities--trying to figure them out, offer solidarity--isn't this just as bad?
Unlike Hazel, I have no frame of reference to understand life as a child for whom disability isn't a daily thing. I don't understand not knowing that a person may not want to explain their wheelchair, cane, or cannula to you. My immediate thought is that it's not my job.
Until people with disabilities are not an unusual sight out in the world, though, it falls to me. I have to admit, it worries me that even if the day comes where people in wheelchairs do not have to explain themselves to any form of stranger, I still will. But the issues of being one of ten in the world are topics for another post.
I plan to work on it, using Hazel as my guide, but I may never get to the place where it's totally okay.
And maybe that's totally okay, too.