I met Carmen, her husband Alex and their daughters in 2012, when I oversaw Space No. 1. That was Extreme Kids & Crew’s first playspace, a comfy room on the first floor of the Coop School, which we repurposed into a creative haven for families who had children with disabilities. Yahaira was then 4, her older sister, Luz, was 9, and Milagros was a little baby. Carmen had found us because of Yahaira, who did not communicate with language. Instead, she announced herself with the brightness of her eyes and the speed of her movements. She was lucky to have an older sister in Luz, who was articulate on her behalf. Both girls wore their hair in glossy black braids that whipped in graceful arcs when they jumped into the ball pit, or dangled down and brushed the big wooden art table when they sat to draw pictures. I enjoyed talking with their mother, Carmen, but we didn’t have much time as she was busy tending to her daughters, guiding them and giving them tools to play and express themselves.
They lived in East Harlem—a real trek from Space No. 1, which was in Bedford Stuyvesant. But they made the trip often, and I was always happy to see them. They were the sort of family that knew exactly what Extreme Kids was about—having fun and celebrating each other, regardless of quirks and oddities.
When we moved to Red Hook, a more remote neighborhood in Brooklyn, the trip became too difficult for Carmen’s family. I didn’t see them in person anymore, but occasionally their pictures would pop up on my Facebook feed, cheering me. Not long ago, Carmen posted a note, written in a child’s hand. It was by Yahaira! She had begun to write.
The day after the presidential elections, I stumbled around Manhattan’s drizzly streets, mulling over how the shift in political power could hurt people with disabilities, people in general, and the earth upon which we all live. My fellow pedestrians seemed to be in the same somber mood. Indeed, it seemed that we had all been hit with an unsettling medical diagnosis at the same time. When I got home, I checked my Facebook feed and noticed that Carmen had posted a picture of Yahaira. On hearing that Trump had won, Yahaira had spoken. “Hillary doesn’t give up,” she said. “We must never give up.”
“Never give up.” I couldn’t think of a better message or, for that matter, a better person to deliver it. I contacted Carmen and asked if I could visit. I wanted to see the whole family, and I wanted to hear Yahaira’s voice for myself.
So it was that towards the end of November, on a rainy Tuesday afternoon, I took the Number 4 train up to 125th Street and slurped through the puddles to the seventh floor of the highrise apartment building where they live. Carmen greeted me cheerfully and led me into a cozy apartment with paper cutouts of leaves decorating the living-room window. Her mother and brother were there, watching Spanish-language soap operas, and Yahaira was just home from school. She had the same glossy braids that I remembered, and her sneakers lit up with different colors every time she stepped. I asked her if she had anything to tell me. She said “nothing.” I said I’d love to hear what she was up to, and she said, “I’ll tell you after lunch.”
I talked with Carmen as Yahaira spooned her soup at a table by the window. Yahaira is now nine years old, and Luz, who would soon return from school and show me her charming sketchbook, is 14. On learning that Luz attended Trevor Day School, a competitive independent school on the Upper East Side, I congratulated her mother. Carmen gently shook her head. “I didn’t get her in,” she said, smiling. “She did.”
Yahaira is in a public District 75 program at the Mickey Mantle school on West End Avenue, where she has thrived in an 8:1:1 class. She
speaks both in English and Spanish.
|Carmen and Yahaira|
I asked Carmen my standard question about disability: how would you define it? Carmen frowned. “I don’t like the word,” she said, after a while. “You are saying the person can’t do something that someone else can do, but they can. Just in a different way. Maybe you have to tweak it, or understand it differently, or slow down. Maybe you have to be patient.” She told me that she doesn’t usually say Yahaira has disabilities or that Yahaira has autism. “She has all kinds of abilities. Her memory is awesome. We all have things that we struggle with, it’s just that with some people you can tell, and some people you can’t.”
I asked Carmen for a recent wonder. She told me about her last parent-teacher conference at Yahaira’s school. The teachers had told her they thought Yahaira was ready to move on. Every quiz she’d taken, she’d earned a 95 or 100. The teachers showed Carmen things Yahaira had written, her ideas spilling out on the page, in legible handwriting. “I was bawling,” she said. She loved the school and didn’t know if she was ready to leave it. But, apparently, Yahaira was.
Yahaira finished her soup and came over holding her iPad, which Carmen had procured through an Autism Speaks program that grants tablets to families with limited incomes. I asked Yahaira what her favorite apps were. She turned the camera to herself and showed me what the various filters did to her face: funhouse mirror effects, halo-like radiations, one with bright psychedelic colors that brought out the bones in her face. “Scary,” I said, because in the picture, she had taken on the appearance of a many-hued skull. Yahaira disagreed: “I’m in the beautiful colors of the rainbow.” Then she demonstrated how to make an image of herself into a movie. She told me she was going to be a director.
I asked her if she had anything she’d like to say to other children, particularly those children like my son, Felix, who have a lively intelligence but do not have language. She got on her mother’s lap and said, “Time for hugs.” Her answer resonated. Hugging is one of the chief ways we communicate with Felix. When he was small enough that I could lift him easily, we’d sneak in hugs throughout the day. I grew to treasure transferring him from his car seat to his wheelchair, the way that his arms would hook around my shoulders, and his chest press close to mine. The memory of those hugs brings me courage, as do Yahaira’s words. I'll be carrying them with me, into 2017.