Day 4. Pleasure
Walking the Edge, Day 4
Today I want to write about pleasure. Sometimes at Riis Jonah is a total joy rocket, and I just get to ride. One of my favorite reads is Harriet McBryde Johnson’s memoir, TOO LATE TO DIE YOUNG. She was a writer, lawyer, and disability justice activist, and throughout the book, she writes of pleasure — the pleasure of “the touch of washcloth covered hands” as she is washed by Geneva, her long-time staff person; the pleasure of her bones telling her it’s morning; the pleasure in her wheelchair of “the simple delight of movement, of jostling and bouncing and shaking, of controlling what can be controlled, flowing with what can’t.” She writes the pleasure of the body: “imperfect, impermanent, falling apart” and “peculiarly our own, so bound up with our disabilities that we wouldn’t experience them, or wouldn’t experience them the same way, without our disabilities. I’m talking about pleasures that may seem a bit odd.”
In many of my pictures, Jonah is holding a hanger or a spatula, his two objects of choice. We call them tap-taps because that’s what he does, taps with them against his feet when he’s sitting, his hands when he’s standing, finding the edge of his body. What pleasure is Jonah experiencing that is so particular to his particulars, his body and mind, that all I can do is watch, with the hope of opening myself to some vicarious spike of joy?
Harriet McBryde Johnson writes, “How is it possible that nondisabled people tend to feel sorry for me? It still takes me by surprise. Peter Singer* couldn’t imagine a disabled child enjoying a day at the beach and he’s hardly alone. The widespread assumption that disability means suffering feeds a fear of difference and a social order that doesn’t know what to do with us if it can’t make us fit its idea of normal.”
What might be found by living into the particulars of the body and the possibilities of pleasure? What can we learn about the limits of the social order from those whose pleasures reveal and refute the normal?
Prompt: Seek pleasure at the water. Where do you find it? How do you feel it in your body? How is your experience of pleasure particular to *your* body? Does that open up some new way of seeing or feeling the waterfront?
*Peter Singer is an Australian moral philosopher known largely for his arguments for animal rights and widely criticized for making a case in favor of selective infanticide of disabled babies. Harriet McBryde Johnson famously debated him at Princeton in 2003, which she writes about here: https://www.nytimes.com/2003/02/16/magazine/unspeakable-conversations.html
Image description: The boy leaps in an empty parking lot, a broken hanger in his left hand. He’s wearing a bright blue winter jacket and Christmas pajama pants, his hair flying back in the wind, his tongue out and face alive with pleasure.
Image description: The boy stands tall in profile, filling the frame. He is wearing a satiny blue jacket and black pants, and holding a red hanger in his hand, a peaceful, closed-mouth smile on his face as he looks out at the ocean. The Riis bathhouse is in the distance. The sand is dry, littered with white shells, and the boy is barefoot, his hair wind-blown back. No clouds are in the sky, the ocean is dark blue, the day looks cold.