The wheelchair mechanic knocks at the door. My husband, Justin, answers, and a hefty man wearing steel-toed shoes comes through our kitchen carrying a small tool box. It’s 2016 and I’m in the living room, strapping orthotics on my five-year-old, Fiona. The mechanic stands beside her empty wheelchair, which is waiting in the dining room.
“Do you need anything from us?”
I call out, pulling the laces of her shoe tight.
“Just the passenger,” he says gruffly.
I hurry, and when Fiona is all laced up, I lift her to her feet and send her over. In a thump-thump rhythm of deliberate, confident steps, she walks to her wheelchair, a lean, glimmering machine custom-made for her. She almost never uses it now that she walks, but when she needed it once this past year, her legs looked cramped. So the mechanic will tweak it.
He looks down past his belly to my one-metre-tall child. Although Fiona eats her weight in cheese, she’s very thin and a head shorter than kids her age. “Hi there,” he says in a pitch usually reserved for chihuahuas.
I get up from the carpet. I’m going to have to do the thing. It’s a thing I don’t always even realise I’m doing in the moment, and yet I’m compelled to do it with regularity. I’m going to have to show someone that Fiona understands, that she’s not a dog but a human.
My daughter, who has Wolf-Hirschhorn syndrome, a rare chromosomal deletion, is largely non-verbal, and the words she can say aren’t usually intelligible to people who don’t spend a lot of time with her. “Hat” is sometimes “ha”. “Daddy” is “geggy”. Strangers don’t immediately know how to relate to her. They assume Fiona doesn’t understand them. I often need to show them that she does. How do I do it? I use a normal voice. I talk to her like a person. I presume that she understands me, which she often does.
“All right, Fiona,” I say, “go ahead and climb into your wheelchair.” She places a leg on the footrest and tries to figure out how to get her body into the seat. With some assistance, she gets there. The mechanic notices that the footrest needs to be lowered.
“Okay, honey,” he says again in a high-pitched voice. “Let’s have you come out.”
But before she can stand on the footrest and lower herself down, he grabs her around the waist and pulls her out of her chair himself. I calculate that my methods have so far failed.
The footrest is the only thing to fix, so the mechanic is in and out, and my work as a parent is minimal. But it finally dawns on me how much invisible labour I do.
Fiona and I have been visiting a lot of doctors and specialists lately. They demand chunks of time (sometimes full days), they cost petrol (sometimes a half tank) and they cause stress (sometimes immeasurable) as my husband and I figure out the logistics of who will pick up whom, and when and where; we also have a three-year-old daughter. But they also cost the energy that goes into subtly advocating for Fiona. It’s a bullet point in my job description. In addition to my career as a writer and adjunct writing professor, I’ve got to make sure medical professionals speak to Fiona with respect so that she can preserve her sense of dignity. I’ve got to make sure they appreciate that she comprehends them.
“Does she show that she understands you?” the ear, nose and throat doctor asked me the other day while Fiona sat on my lap. He could have assessed her himself. She was, after all, right in front of him. Instead, he went through me. “If you ask her to do something, does she do it?”
“Yesss,” I said, willing myself not to roll my eyes. I wondered what it must be like for my girl to have to hear this kind of talk about herself all the time.
Minutes later, the doctor led us into a soundproof, white-walled room, so muffled that when I spoke, it felt like my ears had been stuffed with cotton. He sat on the other side of soundproof glass and asked Fiona to point to different parts of her face. She obliged happily for several minutes. When we exited the room and returned to his office, he declared in a loud, bombastic voice, “Well, she’s not deaf!”
It was unbelievable. If he had realised what I’d already told him about my daughter, which is that she can hear and understand, then why was he still talking about her rather than to her?
This happens all the time.
The worst instance was a few weeks ago at another appointment. A doctor was assessing one of my daughter’s medical issues. She gazed down at Fiona, who stood directly in front of her, returning the gaze. Even though this doctor looked at my daughter, she still spoke to me. “I mean,” she started, “she’s a small, thin, weak…” Person, I thought. Say “person”. But instead the doctor said, “thing.”
A small, thin, weak thing. It’s probably the last way I want my child to hear herself described.
Friends suggested I rage, call the doctor’s boss, find another physician. But paediatric specialists are few and far between, and Fiona wouldn’t have any other options.
My family and I often have to work with specific medical professionals, poor bedside manner or not. So a few weeks later, I called the doctor. I told her Fiona indeed can understand quite a lot. I quoted her back to herself: “small, thin, weak thing”.
She gasped. “I’m so sorry!” she said.
I said I didn’t want my kid going through life hearing people describe her in those terms.
“I’m so sorry!” she said again, and I sensed she truly was. I asked her to be more mindful of her speech. “Of course,” she said.
At the next visit, this doctor spoke directly to Fiona.
It’s a taxing part of my job as the mother of a kid with disabilities. I shouldn’t have to do it, but I do. One person at a time, through subtle cues or direct conversations, I try to teach people: my kid is a person. Just talk to her like a person.