Image description: A landscape oriented photo of Riis beach. The line of the horizon splits the image just above the middle. A winter sky is mainly shades of white, inflected with lateral brushes of silver, lavender, and, where the sun will set, peach and gold. The sun is white, with an aura of yellow. Beneath the sky is the beach: dark sand, silver with the skin of receded waves, which bubble white where the water froths. Low waves lap in, white where they break. The sea is otherwise grey. On the beach, directly beneath the circle of the sun, a young boy stands, legs scissored as he steps toward the sea. He is seen in profile, and, backlit, he’s all shadow. His raised foot rests mere inches above the beach—it will touch down the moment the photo ends. He wears a winter coat, its hood hanging down behind him. His mouth is slightly open, his head slightly forward, his whole pose intent toward the sea. His shadow stands directly beneath him, mirrored, so he looks doubled.

Walking the Edge, Day 1

I am here for #WalkingTheEdge as a mother to and student of Jonah, age 8, who has Down syndrome, Autism and hearing loss, and a profound connection with water. As an oral historian, I try to listen deeply, and in relationship with Jonah, I am learning to listen differently. For Walking the Edge I will try to steward his story by way of my own, following his gaze to Jacob Riis, where we went near daily when the city shut down in March. He needed the ocean, me the empty beach. More than a site for recreation or relief, Riis was a critical enclave, a place where my son and I could be together, needless of speech, at a kind of peace, away from all that loss. 

Walking the Edge, I will reflect back on those days and refract them through the lens of disability justice. I am a temporarily able-bodied (TAB) cis white straight woman, and cannot, do not, speak for my son. But I wish to share my experience of him, with respect for the limits of what I can know, because he has so fundamentally changed my understanding of this ablist world. Before Jonah was born, I had never had a meaningful encounter with anyone with intellectual disability*. Birth is as meaningful an encounter there is, and his proved also mine: a beginning, a transition into a new way of being. It was no accident that I had never before met anyone with Down syndrome. The world has written us apart; the world is written on ablist terms. Learning to see and name and work against this has been my ongoing labor, and in that way, this birth never ends. I want to lift up some of the people with disabilities I am learning from, and take us all to the edge, together. I will center and work with the words and ideas of Alice Wong, Mia Mingus, Mel Baggs, and Harriet McBryde Johnson, taking some of their expertise to Riis to consider how disability justice frameworks might prompt new questions about our waterfront, new ideas about access and pleasure, and new possibilities through ritual and crip ingenuity.  

*This is the term broadly used in the disability community I’m most familiar with, itself a diverse group of self-advocates and individuals with a range of diagnoses, and the family members, caregivers, educators and advocates who work with them. There is no single “disability community,” but many varied and rich and complex disabled communities.   

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

@works_on_water @nycwaterfront @culturepusher @nycplanning @adniralc1 @artschoolscammer @evemosher @gatablanco @scsunde @stoishere @nancy9000 @emilyblumenfeld @nickipombier @__sunandsky @_sunandmoon @prof.0und @bp_oddisee @underwaternewyork

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