Image description (header): a young boy with Down syndrome, wearing a nubbly cream-colored fleece, sitting on the beach, facing the ocean, seated on a pink blanket.

Walking the Edge, Day 3

In seven weeks between March and May, Jonah and I went to Riis Beach 26 times. We drove, and the drive that typically takes no less that forty-five minutes was, on the empty Belt, twenty, twenty-five. Sometimes when we arrived we didn’t leave the car, doing donuts in the empty parking lot and turning around to go home.  We always took the same route; once, when I tried to trick him into a trip to Shirley Chisholm, just to switch things up, he yelled “Beach!” when we passed the exit onto Flatbush that we always take to Riis. The disruption ruined Chisholm for him—he grouched through the whole five minutes I managed to get him to walk there. Routine is for Jonah something requiring of a different word: it’s more than habit or a sequence of action, repeated. I’m not sure how he experiences it but from my perspective it seems more like gravity, some force that keeps him anchored, since losing it destabilizes everything. Losing school, as the macro routine organizing his (and my) weeks and days, and losing all the micro routines his educators provide to minimize the friction in his days, was (is) the most difficult part of our personal experience of pandemic conditions. Our trips to the ocean became a kind of replacement. We went near daily, or so it felt, and followed the same path and itinerary, packed the same food: fruit snacks (one red pack, one purple), PB&J, water with a straw, a tube of Ritz crackers. We parked in the same spot, took the same path to the same place on the beach, where Jonah would eat the food in the same order and I would sit behind him, providing each snack in sequence. Then we’d sing: Happy Birthday to the ocean, or the ABCs with every few letters swapped out for the word “ocean,” and then he’d get up and rock where the water edged the sand. I began taking the same photo each trip, and letting one shell find me, which I’d thumb in my pocket all day and add to my jar at night. 

I don’t know what any of this does for Jonah, what need it fills, but for me, the repetition was like worry beads or rosary, a way to mark movement through those terrible days, maybe a kind of prayer. Ambulances passed both ways on the Belt, each day we drove, and alone together at the beach I felt some space allowing grief. But mine is a narrating mind, always looking to line up the right words. I don’t know how Jonah’s mind orders, or rides, time.  

One of my most profound teachers of disability justice is Mel Baggs, who passed away this spring. They were, among other identities, an Autistic self-advocate, and wrote extensively about their rich and complex experience with disability on their blog which I will share more from in future posts. Today, I want to share their reflections on patterns and language as a way to ask new questions of my own attention to repetition at Riis this spring. Alone with Jonah, we don’t need to speak. We attend together to the ocean, he communing with it through his body, me there thumbing some shell, trying to quiet my mind. Mel Baggs taught me the incredible power of decoupling words from language from meaning; that their experience of the world is itself a language, that sensory impressions and patterns, through the body, through sensations and engagements with the material world, that all of these need no words but are themselves the whole thing, the language. I am the one who needs the words. What do they give me? What happens if I attend instead to Jonah’s way of being, at the ocean? What can I gain if I stop needing words, how can I experience a new way of knowing what it means to live with the waters?  

Prompts: Identify a spot on the water, or at the city’s edge, that is so familiar to you you don’t even see it. 

Prompt 1: Pause there for a while. Let your gaze come to rest on the water. Allow it to be restless, your gaze, the water, the light. If words come to you, let them come but send them off, down the river. Visualize them coming apart, drifting away. Stand there awhile, long enough to lose words, if possible. How does your body feel? Don’t say: just feel it.

Prompt 2: Collect an object from this familiar waterfront place each time you pass it, for a week or two. Don’t think too hard, just let something find you: a pebble, a stick, a shard of glass. If you pick something up but it doesn’t feel right, let it go and find another. Collect these in a jar, and then line them up. What patterns do you notice? How can you scramble them to see new patterns? How does this change your attention to the familiar place? 

Walking the Edge is a project of Works on Water, Culture Push, and the NYC Department of City Planning

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Image descriptions:

Left: A grid of twenty square photos, each a different seashell on a white background. Some are shaped like ears, some are clam shells lined with rust and gold, or poked with a perfect hole, some are blue grey oyster shells, some are broken, some are whole.

Right: A grid of twenty square photos, each showing a young boy with Down syndrome from the back, facing the ocean. His hair, light brown and cut short and jagged, is sometimes windblown, sometimes hidden in a hood.