Paint & Political Statements

How old are they? a cashier at the home supply store asks.

Fiona, Petra, and I are waiting for a quart of paint to get mixed.

Two and four, I say, tapping the heads of each child.

That one’s four? the cashier asks, looking at Fiona. She’s small.

She is, I say.

They’re the same size, she says, marveling innocently.

I nod. I like the cashier’s open attitude, and I know I’m going to be waiting a while, so I say, She has a chromosomal syndrome. Which makes her small. But I trail off, realizing I don’t have the energy today to educate beyond that. Fiona’s been recovering from an illness, and she spent the night kicking me awake.

Fiona sits down on the linoleum floor of the store. She flips through a paint brochure I gave her. In it, beautiful young couples dab streaks of teal and orange and maroon onto their white living room walls.

They’re both so cute, the cashier says and looks at Petra. Hi there!

Petra looks visibly concerned and inches toward me. She’s holding her baby doll, and she clutches the doll tighter.

Stranger danger, the woman mixing our paint says from behind the counter.

The cashier switches her attention to Fiona. Look at her, she says to the paint-mixing woman. Isn’t she cute?

She’s like a doll, the paint-mixing woman says.

What’s that?, the cashier asks, and I cringe, because I have to hear it again.

I kneel down and touch the hair of Fiona and smooth it and otherwise busy myself with senseless tending of my kid as I pretend not to hear,

Her features, they’re like a doll’s.

Yeah, the cashier says, still smiling at my kids.

It’s true, I think. Even moms of kids with Wolf-Hirschhorn syndrome admit that their kids have doll-like features.

(Do people ever tell you that your kid is like a doll? I once asked a mother of a one-year-old girl with WHS. I was holding her girl. She was maybe twelve pounds, just as Fiona was at that age. I hate when they say that!, the mom answered. I nodded.)

In front of a wall of paint chips, I have the impulse to engage with my kid in an intentionally non-doll-like way. I want to show the women that my girl’s not a doll, but instead a person, with opinions. I ask Fiona, Do you want a different catalog?

She nods yes.

What one do you want? I stand up, eyeing the wall of catalogs.

Fiona looks at them but makes no indication.

This one looks good, I say. It has people in it.

I hand her the new paint catalog, and she flips through it eagerly, all the while feeling the eyes of the women on us. My girl and I are on stage.

It’s a stage I first learned that I stood upon when I become a new mother, and it’s a stage I think all mothers, maybe all parents, suddenly find themselves on, especially in public when an outing with one’s kids attracts onlookers. People marvel and comment, they compliment and advise. But it’s a particularly tricky theater with Fiona. I fret about a variety of narratives that could form in the onlooker’s mind, one of which goes: Small, Cute, Doll, Disabled, Spectacle. I want to offer the counter narrative: Small kid, Regular Kid, Regular Person. The longer an onlooker stares, the more I’m convinced I’m losing ground.

I can’t pretend to know what the women at the store are thinking. Maybe they are indeed thinking, My, what a cute kid. Maybe they are starting to think, That kid can’t talk. Maybe they are starting to think, That kid’s obviously not a regular kid.

My hope is they are thinking, That Mom talks to her kid like she’s a regular kid—that kid is a regular kid!

But I have no idea. The paint-mixing woman hands us our quart of Marine Blue. I thank her and tell my kids to say goodbye. Petra says Bye. Fiona raises her right hand and waves it towards herself.

Later in the day, when the kids are asleep, I read this quote from Kenny Fries, a poet and nonfiction writer with a physical disability: I’m not really someone who climbs on the barricades or collects signatures for petitions. Personally, my kind of political action is to be anywhere where my presence disturbs the status quo – whether that place is a bank, a university, a public toilet, a gay bar or any place else. I’m kind of a walking political statement, even though I’m not always aware of that.

I wonder if that’s what I felt at the store: the realization that my girl and I were a walking political statement. The weight and the pressure of that, as we ever-so-gently disturb the status quo. I was trying to etch my statement into the air between the paint aisles. It’s a lot to ask beside a wall of Marine Blue and French Rose and Hawaiian Sky.

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7 thoughts on “Paint & Political Statements

  1. Thank you, in the deepest sincerest manner I can communicate which is still not enough via typing.
    Today I came to pick up my kid from martial arts with his Dad, to go to adaptive swimming lessons. I stood out of his line of vision and was engaged unwillingly in conversation with a father who felt he needed to educate me on “natural therapies” that “cured” his son’s “touch of ADD” that I should “really look into”…and I just couldn’t. I managed to choke out “Well, we sort of like him the way he is and we happen to believe in neurodiversity, so thank you, but we’re all set.”
    I wanted to valiantly defend my child. I wanted to grab the man’s face and force him to really LOOK at my son; I wanted to launch into an eloquent diatribe about ableism and societal views of “cures”. I wanted to change what he sees when he sees my child, who is exactly what I signed up for the day I chose to have him and every day since. I wanted to tell him about the kid with the syndrome we don’t have a name for yet and the seizures and the tics and that he learned to RIDE A BIKE this summer (I still tear up typing that because he is almost unbearably proud of this), well he needs no actual cure.
    But I was tired. And so I left it at that and went to swimming where he put his face in the actual water voluntarily for the first time in his life ever and glowed with the accomplishment of it all and every single time he came up, he looked for me, to make sure I saw it. And every single time, I was there and couldn’t be more thrilled for him.
    I think we get to be tired. I am also, often, just happy to be the person he looks for. Thank you for sharing your view from your boat, it helps mine stay afloat.

  2. I am Elizabeth’s friend. I read your post and I was thinking two things at the same time. 1) thank you for educating me and 2) that is not what I would be thinking even if I commented that your daughter looked like a doll. I would be thinking of a doll in a beautiful sense not an unreal person sense. I doubt I would comment on your daughter’s size. I wouldn’t have negative thoughts on disabilities that I might observe. I am a researcher, I observe. I don’t know why I’m writing really – I guess to share appreciation in making me more aware and to tell you that I would not have the thoughts you might think people do. How does it feel best to learn and express interest in your child or is it more like it is none of your business? If I did not read blogs like this I might never know of children like Fiona.

  3. I can so relate to this feeling of being on stage. I could always feel people looking at Eva and I would refuse to catch their eye, instead I would just look at her and talk to her and show them everything was fine. Because I could feel the worry and curiosity in their stares.

  4. I think it’s the constancy of it all — the repetition of it all — having to do IT, all the time. This is a powerful piece not so much for having an answer but more for its observational quality. Does that make sense? I’ve been thinking lately (and posted about it as well) that there should be a twitter for caregivers, that those pithy 143 word observations we make ALL DAY LONG need a place. Here’s the one I see from you: “the realization that my girl and I were a walking political statement. The weight and the pressure of that, as we ever-so-gently disturb the status quo.” You’ve captured perfectly something that I’ve never been sure how to articulate.

  5. So, here is my comment. I have three kids, two of whom have special needs. My son, four years old, was born with right side microtia/atresia (one ear abnormal/ does not have ear canal). He also has some speech delay. By far, the most challenging part of this for him is when a child stares at his ear. He absolutely knows when this is happening and it absolutely bothers and affects him. I have been trying to figure out the right response for me to say. I usually jump in super friendly and say “hi.” I will say one of the greatest things that happened recently was when a 50 year old man with the same kind of hearing aid came up to him at target (bone anchored hearing aid.) I made a big deal out of BAHA guy and he was so excited to see someone older than him who wore the same hearing aid. But, children can be the most intrusive about his specific difference (in my opinion). And my child should not be expected to answer all of anyone or any child’s questions. And, the fact that it happens more than once can be very draining. I, and my child, are not in charge of educating you!

  6. Thank you for this post. For different reasons, I identify with the idea of being on stage. We are a transracial adoptive family; when we go out, we get a lot of stares and questions. I often feel like I’m making a political statement or playing adoption ambassador or having to defend myself as a parent when I’m really just trying to pay for my groceries and get home before nap time.

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