The Gaze

Mild Spoilers for The Fault in Our Stars by John Green

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.

Thoughts from Booksignings

Last night, Mom and I drove to New Orleans to be a part of the Tour de Nerdfighteria. I hadn't been to New Orleans since before Hurricane Katrina, and probably since a middle school field trip Mom insists happens, but I do not remember. I can't comment on how the city has or hasn't bounced back from the storm.. All I can know is that the fact that humans try to find humor in tragedy:  we picked up a parody newspaper called "The New Orleans Levee: We Don't Hold Anything Back."

Actually, I saw a lot of humor there. Like these signs on the bathrooms at the Temple Sinai where John and Hank were. I understand the idea--don't put your shoes where people might put their hands--but still.






New Orleans also makes me think of Neil Gaiman's short story set in the French Corner, featuring voodoo and hole-in-the-wall watering holes. We ate lunch with one of my friends from high school at a place called Daisy Duke's, and their menu brought to mind the party-nature of the city:

But this wasn't the kind of party I would be attending. There were already Nerdfighters outside the venue at five when we got there, but we ended up close to the front of the line. Mom worried that she'd be the oldest person there, but she wasn't.

We saw the TFiOS van.

Mom read Paper Towns









 In line, a boy was doing a project recording people's reactions to a question about love, people were quoting John's books and humming Hank's songs. Inside, I heard teenage girls gushing over To the Lighthouse, and I thought of myself at fifteen, designing an entire unit on the book as an extra credit project, and wished there were Nerdfighters.

But while John talked about the joy of writing for young adults, about their desire to figure out who they are and how their experiences are new.

And I thought about how I didn't necessarily want to be seventeen again, but I could still live with that kind of wonder about the world, and stop focusing on the uncertainties. I love the random, exciting experiences of things like booksignings and meeting people I admire, but I'm generally nervous around strangers, for fear that they'll judge me. So I plan to try to treat each new person like they're someone I admire. It won't be easy, but it's a goal.

They signed ALL MY THINGS and were incredibly nice. I finally got TFIOS (my thoughts about which will be posted later).




They say you're not supposed to meet your heros, because they might not live up to your expectations of them, but I have to say that meeting the Greens makes me admire them even more.

DFTBA

*Let's add to the pictures of me getting things signed with frizzy braids in my hair!
**It was very hard to get pictures of them. They move around like hamsters on speed.