This won’t be much of a post given how much I could say.
I was out with a good girlfriend musician who after a child-bearing hiatus is thinking of going back to performance. We talked a little of fame after going to Adriano Zumbo’s bakery and talking to the man himself who has been on tv here in recent years. My girlfriend went all starstruck and girly which was lovely to see. One of the topics we talked of was being on public display, something I know a bit about.
One of the things I have noticed again of late is the fact that I seem to be or feel I need to be always ready to be on public display. It’s not fame or even notoriety for anything more notable than I get around in a wheelchair.
The basis for the attention ranges from nosiness such as these comments to me in the last week from grownup meant I met for the first time on the train system.
- “How does the chair work?”
- When do you charge it?
- ” I think you’re rear tyre is falling off.” (it wasn’t and no he wasn’t trying to be helpful)
- “you need a pouch on the side of the chair like this (gestures with hands)”
- “Can you sleep in a normal umm bed?”
It goes from the benign to the ridiculous. From nosy (above) to rude and curious or companionable (“I have a friend/sister/third cousin 6 times removed who broke her legs, so I know what its like”, “Do you know a guy named Bill (since you both are like that)?)
I feel I have a responsibility to be the most generous positive version of myself I can be. For all sorts of reasons. One of these reasons is the sense that I want to give the public especially children a positive experience of disability, if I am the first part of their education in that area. Sometimes that onus gets a wee bit too heavy, but it’s a hard one to shake.
Children of a particular height/age can be very funny; trying to work out how I’m moving myself, or why my “pram” is so different or why I’m such a big baby. I usually try to smile and say hello if I’m close enough. I do try hard not to laugh too hard when the child is staring so hard they walk into a wall (on more than occasion). I’m a little impressed when a restless or upset child can be suddenly quieted merely by being dumbfounded at the sight of me rolling about doing my business.
The attention is by no means constant; at least the comments and the wish to stroke my hair or pat me aren’t. The readiness must be. Especially when I don’t have a normal looking person with me it seems.
By the way, as someone who doesn’t like macaroons the one’s at Adriano’s were sublime. Go there! There’s even a ramp!
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