輪椅師傅敲了門。外子賈斯丁去應門，一名人高馬大的男子腳穿鋼頭鞋，提個小工具箱，穿過我家廚房。那是2016年，我正在客廳幫五歲的費歐娜穿戴輔具。輪椅備妥在餐廳裡，師傅就站在空輪椅旁。
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.
「需要什麼嗎？」我喊道，一邊綁緊她的鞋帶。
“Do you need anything from us?”
I call out, pulling the laces of her shoe tight.
「就等要坐的人過來，」他粗魯地說。
“Just the passenger,” he says gruffly.
我加快速度，綁好費歐娜的鞋帶後，拉她起身，要她過去。她以謹慎而自信的步伐，在砰砰的節奏下走向輪椅。那部閃亮的機器有斜度，是為她量身訂製的。現在她會走路了，幾乎用不着輪椅，但去年有一回需要時，發現腳得縮起來。於是我們請師傅來調整。
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.
他把頭低下來，看着肚子下方我那一百公分高的孩子。儘管她吃了很多乳酪，個子仍舊瘦小，比同齡孩子矮一個頭。「嗨，」他以通常面對吉娃娃犬才會用的音調說。
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.
我從地毯上起身，必須去做一件事。那是一件我在做的當下未必有自覺，然而不得不經常做的事。我得讓別人知道費歐娜有理解力。她不是狗，而是人。
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.
女兒罹患沃夫－賀許宏氏症候群，那是一種染色體缺損的罕見疾病，大多數時候不太能說話，至於能說的字彙，不是長時間與她相處的人往往也聽不懂。有時候她說「帽子」，聽起來像「貓」；說「爸爸」聽起來像「帕帕」。陌生人無法立刻知道如何與她相處。他們以為費歐娜無法理解他們的意思。我通常得做給他們看，其實費歐娜懂。我怎麼做呢？用正常的語氣。我用對人說話的方式跟她說話。我假定她了解我的意思，而她通常的確能聽懂。
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.
好，費歐娜，」我說，「往前走，爬到輪椅上。」她把一條腿放到腳踏板上，設法讓身體坐到座位上。在些許協助之下，她坐好了。師傅發現踏板需要放低些。
“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.
「好了，親愛的，」他又拉高音調說，「我們要讓你下來囉。」
“Okay, honey,” he says again in a high-pitched voice. “Let’s have you come out.”
但她還來不及站上踏板，讓自己下來，師傅就抓着她的腰，逕自把她從輪椅上拉起來了。看來，到目前為止我的辦法是失敗的。
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.
Photo: Getty Images
由於只有踏板需要調整，因此師傅來了沒多久就走了，身為家長的我能做的不多。但我終於意識到我所做的努力有多少是不為人所見的。
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.
最近，費歐娜和我去看了許多醫生。這需要大把時間（有時候是一整天）、大量汽油（有時用掉半個油箱的油），也可能引發壓力（有時候難以估量），因為我們還有一個三歲的女兒，外子與我得想好誰該去接誰，什麼時候去哪裡接。此外也得耗費力氣委婉含蓄地為費歐娜發聲。這也是我工作內容的一個重點。我除了是職業作家，兼任寫作教授，還得確保醫護人員用尊重的態度跟費歐娜說話，好讓她的尊嚴得以保全。我得確保他們明白費歐娜能夠理解他們的話。
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.
「她能證明她了解你的意思嗎？」前幾天耳鼻喉科醫生問我，那時費歐娜坐在我腿上。他大可自己評估，畢竟她就在他面前。但他還是問我。「如果要求她做什麼，她會做嗎？」
“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?”
「會——，」我一邊說一邊克制自己想翻白眼的衝動。我心想，女兒老是得聽別人這樣說她，不知作何感想。
“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.
幾分鐘後，醫生帶我們進到一間白色牆面的房間，房裡有會消音的隔音設備，讓我說話時覺得像耳裡塞了棉花。他坐在隔音玻璃的另一邊，要費歐娜指出臉上不同的部位。好幾分鐘的時間裡，她都開心照辦了。我們出了房間，回到診間後，他以響亮且誇張的聲音說：「嗯，她耳朵沒聾！」
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!”
實在難以置信。我已經告訴過他，女兒聽得見，也有理解能力，要是他明白我說的話，為什麼還是跟我談她的事，而不是直接跟她說話呢？
這戲碼一再上演。
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.
最糟的例子是幾週前另一次就診，醫生評估費歐娜的某項健康狀況，低頭凝視站在她面前的女兒，女兒也回望她。即使醫生看着我女兒，卻還是跟我說話。「我的意思是，」她開口了，「她是個瘦小、虛弱的⋯⋯」我心裡隨着她的話想：「人，說人。」但她說出來的卻是「東西。」
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.”
「瘦小、虛弱的東西。」我最不希望孩子聽到的，大概就是別人這樣來稱呼她。
A small, thin, weak thing. It’s probably the last way I want my child to hear herself described.
朋友建議，我應該要發火，打電話給這名醫生的上司，再換個醫生。但是小兒專科醫生少之又少，費歐娜也不願意。
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.
無論對方態度好不好，我和家人經常得和不同的專科醫護人員合作。因此幾個星期之後，我打電話給這位醫生。我告訴她，費歐娜確實懂得很多事。我將「瘦小、虛弱的東西」之語複述給她聽。
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”.
她倒抽一口氣，說：「很抱歉！」
She gasped. “I’m so sorry!” she said.
我說我不希望孩子一輩子聽別人用那樣的詞彙來形容她。
I said I didn’t want my kid going through life hearing people describe her in those terms.
「我很抱歉！」她又說了一遍，而我感覺到她是真心的。我請她說話時更謹慎。「當然，」她說。
“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.
下次就診時，這位醫生就直接跟費歐娜說話了。
At the next visit, this doctor spoke directly to Fiona.
身為身障兒的母親，這是我職責中最辛苦的一部分。我本不應該需要這麼做，但我必須做。我或委婉暗示或直接提示，一次一個人，努力教育人們：我的孩子是個人，請對她講人話。
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.
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