Close Encounters of the Ableist Kind

It was 3 pm but it felt like 4 pm, and we live in Vermont, so the low-hanging sun made it look like 5 pm. Fiona, Petra, and I cast long shadows on the ground. My shadow was in the middle, holding Fiona’s hand on my left and Petra’s hand on my right. We were at the town’s local playground to squeeze some outdoor play from the last hours of this beautiful, unusual 60-degree November day.

[Image: Overhead shot of Fiona walking along fallen gold leaves. Her shadow is long and lean against the ground.]

“Look how tiny that girl is,” cried a voice, and when I turned my head, a heavyset woman in her fifties was seated at a picnic table with a fiftysomething man and a boy. The woman was staring in our direction, smiling with an open mouth, but the smile was not for us. I knew which kid she meant.

I looked at her. I looked longer than I normally do. I tried to make my looking a piece of armor. I tried to make my look say: “Don’t do that. Don’t objectify my girl.” It hardens a person to give that look, and it’s a lonely thing to do, but when people even come close to making a spectacle of Fiona, a strange and dormant military is summoned inside me. There are horses in there. There are soldiers on those horses, wielding swords. The woman turned away and said nothing more.

I lifted my girls into the bucket swings and pushed. “Wee,” Petra said. Fiona grinned and signed “More.”

[Image: The backs of Fiona and Petra, who are in the swings.]

[Image: The backs of Fiona and Petra, who are in the swings.]

“I wanna swing,” cried the boy at the picnic table. The man said okay and followed him. The woman trailed slowly behind.

And so I pushed my kids, into the late day air, toward the sharp blue sky, beneath the low-hanging sun. And the man pushed his boy, and the woman looked on. The man and the boy talked, and the girls and I talked, which meant that Petra formed whole sentences and Fiona made subtly different vowel sounds that stand for specific words, and we communicated great meanings in this way.

But I felt something. I looked up and saw the woman staring at Fiona. Outwardly staring. Mouth agape, eyes concerned.

“Hello,” I said. It was the sharpest hello I knew how to utter. The flattest, most masculine hello I had in my arsenal. I was trying to do two things at once: cast the armor over my girl again, and require the woman to engage with us as humans. A hello usually beckons a return hello.

And she did say hello back. Then she turned her attention to the boy.

“Your hat fell off, Q-ball,” the man said and laughed. The boy laughed too.

“Don’t call him that,” the woman snipped.

Intent on keeping the rhythm of pushing two kids at once (I push one kid with my left hand, pivot, await the other kid’s back with my right hand, push, pivot, and repeat) I didn’t look over at the boy to check his haircut. But I knew then that he was bald, and that the woman didn’t like it.

“Friday we go to Albany to check your bone marrow,” the man said to the boy.

And just like that, my heart softened to the middle-aged woman. I’m an asshole, I thought. How does that quote go? Be kind; everyone you meet is fighting a hard battle. Who knew what internal struggle the woman was trying to suss out when she looked at Fiona.     

“Wouldn’t it be great if the whole winter was like this,” the woman said to everyone, and to no one, and to everything. To the 60 degree cloudless November day that graced us.

Image: Bare birch threes against a bright blue sky.

Image: Bare birch threes against a bright blue sky.

“Oh, I would love that,” I said. The trees here in Vermont have already been setting stage for winter. And last winter had been brutal, with weeks of single-digit highs.

“They wouldn’t be so cooped up,” the woman said. “They could run around and play. That’s what kids need.”

Our children kept swinging into the sky and back down. One was bald and one was half the size of her peers and the third kept saying, “Wee.” The grandparents and I now had a common enemy: the cold. We had a common goal: to let our kids enjoy this life. I suspected the grandparents, like me, had bigger obstacles in that pursuit than the usual guardian.

I wanted to somehow bridge the divide between this family and mine. I wanted to say, “Hey, I know Albany Children’s hospital. Do you like the giant maze of tumbling balls, instilled into a glass wall on the first floor? Wasn’t that entertaining? Watching the balls get lifted and launched onto the metal tracks and race down like roller coaster carts?” I wanted to normalize the life they lived, which, given the woman’s tensing at the boy’s Q-ball nickname, must not feel normal to her. I wanted to say, It’s okay that these bodies we live in are not always the promises we wished for. It’s cool. It’s life. I’m with you. Or something like that.

But I didn’t see a window for that, and it was time for us to go.

“You’re shivering,” the woman said to the boy. “Look at him, he’s shivering.”

I pulled the girls out of the bucket swings and we headed toward the parking lot.

“It gets cool so fast,” the woman said.

“Yeah,” I said. “It’s getting cool.”

It took us several minutes to leave the wood-chipped playground. Petra got distracted by the monkey bars she couldn’t reach. Fiona plopped down and raked her hands through the woodchips. And somehow I found myself standing beside the woman, who was looking at her grandson.

“He just beat cancer,” she said to me quietly.

“I noticed you mentioned Albany Medical Center. We’ve been there too. But we usually go to Dartmouth.”

I realized the woman probably wasn’t expecting me to talk about children’s hospitals. She probably wanted me to rejoice in her grandson’s victory, so I said, “He beat cancer. That’s so great.”

My kids, by some stroke of grace, were now walking in the same direction, toward the parking lot, so I joined them. The woman walked a few steps behind me. The boy and his grandfather were trailing farther behind her. This was my chance. My opportunity to bridge the gap. To find common ground, commoner than weather, the greatest common ground of all: the experience of living without ground—living without certainty. Living with the knowledge that the body—with its legs and its lungs and its heart—is no promise. Is just a gift in whatever shape you get it. I wanted to say, Yep, we too live an atypical life. So I said, looking at Fiona, “She has a chromosomal syndrome.”

Without a beat passing between us, the woman asked, “How do they cure that?”

A single word can be a bomb. Cure. I realized this woman came from a perspective where disability had to be fixed in order for it to have meaning. He just beat cancer. For the woman, the boy had won. A medal dangled around his neck. When she asked how “they” would cure my girl, she was asking how my child would find victory too.

Fiona walked up to my legs and pushed on them. “Ah, ah,” she cried, which meant she wanted me to pick her up. I lifted her twenty pounds into my arms. “No, they don’t cure it,” I said, because I don’t know when to walk away, or maybe because I’m a teacher and I teach poetic meter and Fretyag’s plot triangle and I teach how to integrate counterarguments into essays, so I think I can teach a whole paradigm shift on a playground. “It’s how she was designed.”

I tried for positivity in this last sentence, but it was laced with irritation, and I sounded tired. I was tired from the end of Daylight Savings and I was tired from the soon-to-be setting sun and I was tired from years of these conversations, where I try earnestly to become the living counterargument to people’s beliefs that my girl needs fixing. That a life with disability is a lesser, a pitiful life. Fuck, I’m tired of trying to show the opposite by example. I’m tired of public spaces becoming places where bodies have to serve as living counterarguments.

Carrying Fiona, I walked away from the woman. Petra was toddling along with me.

“Well, how do they treat it?” the woman cried out, now maybe fifteen yards away.

“Um,” I said.

“She’s so skinny,” the woman said.

I looked ahead, away from the woman, toward our car and the setting sun. “It’s how she was designed!” I called out, to the woman, to the chill air, to the bare trees, to everywhere.

[Image: Fiona walking away from the playground. Petra following behind.]

[Image: Fiona walking away from the playground. Petra following behind.]

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20 thoughts on “Close Encounters of the Ableist Kind

  1. This is so beautiful. Every word. Playgrounds are not just playgrounds for parents of children with special needs. They are battlefields, meditation centres, therapy spaces, community builders, and teaching grounds. The effort I have put into decisions regarding my thoughts, words and actions at playgrounds has worn me out so often. This is such a wonderful illustration of that experience. Thank-you for writing it.

  2. Yes, it can so often be a dicey situation. A little fellow with a bald head who needs his bone marrow checked has won battles with the cancer but the war is not yet won or even at the stalemate where we are left when treatment is over. Went through this myself with one of mine. But sometimes one has to say that to get through the process, and I would not argue the point with those in that warzone. Often when those wars are “won” there is a new “normal” that is not what one expects before all of that started, so your Fiona may well have more in common that way than anyone realizes right now.

    Also, just because someone has a child who has disabilities, issues, is ill, undergoing treatment, does not make that person a comrade in arms, a kind, understanding sole, a source of comfort. There are those who do not have the perspectives, the way with words or to just stay quiet, so that they are not causing pain, sadness to others. You are gracious to realize that those folks you encountered may well have their challenges involving the little boy’s condition, and that was enough for you to give some quarter to her for their struggles.

  3. You shot an arrow and it hit everyone’s heart but hers because hers probably doesn’t have the capacity to receive it. Just wow.

  4. You’re a good momma to Fiona. I hope you know that. I may also need to borrow that affirmation: “It’s how she was designed.” Because self-love with a disability is so hard, yet you’re modeling it well.

  5. Your writing really hits the nail on the head. I think it’s completely understandable for you to put up your walls when someone objectifies your child, sees them as one dimensional. It shows great vulnerability and courage that you gave that woman a second chance. Then the heartbreaking moment where she asked about a cure. It ripped my heart out. I can’t even begin to imagine what it must be like to experience such painful moments on a daily basis.

  6. You had me on the edge of my seat through this whole story. Oh I wanted so much for her to understand! Such a multi-layered interaction, one that you captured so incredibly here. I love your writing. It helps me understand my own feelings sometimes. Thank you.

  7. “Living with the knowledge that the body—with its legs and its lungs and its heart—is no promise. Is just a gift in whatever shape you get it.” Thank you for this. It’s beautiful. It helps me with so many converging questions.

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