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Clapping My Hand Over My Own Mouth

posted Friday October 19th, 2018

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Fall is here, but I’m still thinking about my summer gig.

I spent the hot months of the year with my nose in the dictionary — rifling through medical journals, Googling the history of words, jotting down notes.

And clapping my hand over my own mouth several times a day.

I’ve been a journalist for nearly 30 years and the mother of a child with Down syndrome for 15, so in a lot of ways the assignment to update the style guide for the National Center on Disability and Journalism put me in my sweet spot.

And yet, by the end of the summer, I found myself souring on words in general, barely able to get a sentence out for fear of saying something offensive.

It wasn’t the first time. After my daughter Sophie was born I had a lot to think about, including my own vocabulary. I’d spent pretty much my entire adult life in newsrooms. Journalists – at least, the ones I’ve hung around – are not known for politically correct language. I once complimented my boss on a column in which he wrote off state lawmakers as “mouth breathers.” But after Sophie was born, I was the one asking another writer to stop using the word retarded in staff meetings.

He refused.

I told him to fuck off, but the truth is that I understood. Freedom of speech is the hallmark of the trade, our constitutional right. It’s all that matters, right?

Not really, as it turns out. I went home and watched my baby breath. Out of her mouth. I felt sick.

For years, I worked with a really nice guy who wore a baseball cap stitched with “lamebrain” in big letters. Tee shirts, too. It turns out he and some friends own a skateboard/clothing line. That’s the name of the company, lamebrain. Every time I passed him in the hall, I’d picture Sophie and wince.

By then, most people had stopped using the word retarded around me. But as I learned when I thought hard about what it actually means to have a “lame” brain, or looked up the IQ points originally assigned to the terms imbecile and idiot, or struggled with the correct terminology to describe a friend who uses a wheelchair, it’s about more than the “r-word,” just as the discussion of ethnicity and language reaches far past the “n-word.”

And so when I was invited to join the board of directors of the National Center on Disability and Journalism, I accepted, even though I’d always refused membership in any organization on the grounds that it might affect my objectivity as a journalist.

Who was I fooling? There was no way I could be objective on this topic.

Then came the assignment to edit the style guide, which includes hundreds of terms both acceptable and not. Again, I paused. I thought about Kristin Gilger. Gilger is the director of the NCDJ and senior associate dean at the Walter Cronkite School of Journalism and Mass Communication at Arizona State University, where the organization is housed. She’s also a badass journalist and the one who gave me this assignment.

As I’ve heard Gilger say more than once, the idea behind the style guide isn’t to be the language police, but instead to give journalists suggestions that will give their work more impact. I thought of how many times I had avoided covering disability-related issues over the years for fear of writing the wrong thing, much as I was afraid to reach out to shake the hand of a man with quadriplegia, for fear of embarrassing myself by putting us both in an awkward situation.

I wasn’t sure where to begin, so I started with A – for “able-bodied,” a term that sounds okay but, as it turns out, is often considered insulting. I got stuck in the Ds; for a while, “differently-abled” seemed better to me than “disabled.” After all, “dis” means “not.” Why would someone want to be called “not abled” when “different” sounds so much better?

Turns out, it sounds better to me. But not to a lot of people who feel that “different” is condescending, while “disabled” is honest.

I had a lot to learn. I took NCDJ’s advice and asked people with disabilities how they’d like to be referred to, and when there was disagreement, I said so in the entry on that particular word. There’s a movement to reclaim “cripple,” but not by everyone. Generally speaking, “people-first” language is preferred these days. My daughter is a “girl with Down syndrome” — don’t call her “Down syndrome girl.” But there are some in the autism community who find people-first language offensive. Please, call them autistics.

I spent the summer thinking about disability in dozens of ways I never had, as I ticked through each term in the style guide, parsing different terms for hearing impairment, hearing loss, people who are hard of hearing. I re-read Elizabeth McCracken’s excellent “The Giant’s House,” a novel about an eight-foot tall man in a small town in the 1950s who is invited to join the circus, and flipped back to the F’s to add the word freak.

Several times a day, I caught myself and others using language that used to seem just fine.

“Don’t be an idiot.”

“He seems kind of spectrum-y.”

“That’s crazy.”

Words haunted my dreams. I woke up in the middle of the night wondering, had we included Asperger’s in the guide? Was “albino” ever acceptable, or is it always albinism? (It’s always albinism, I was told by several sources.) I followed every word-related debate I could find on Twitter.

Finally, I got to W for wheelchair user (never wheelchair-bound). Summer ended and I turned in the guide, but I’ve continued to worry. What did I leave out? Will we offend someone? After several rounds of edits the guide went live on NCDJ’s web site this week, so I guess we’ll find out soon.

As for me, I know I still have a lot more to learn. For the most part, I’ve grown accustomed to my internal editor, the one that leaves me searching for words better than stupid. So far, I say “ridiculous” a lot.

And yes, the 2018 update of the National Center on Disability and Journalism Style Guide includes an entry on the term lamebrain. We don’t recommend using it.

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7 Responses to “Clapping My Hand Over My Own Mouth”

  1. Hi Amy, Great entry. You know how if you say the same word over and over again, really fast, how it (momentarily anyway) stops having the same meaning?. We give meaning to words, we take meaning away. Cultural dips and changes favor words for a distinct period of time, then suddenly, fall out of favor. Which got me to to thinking how groups and affiliations tend to take words back — to be different on purpose –the N-word taken back by hip-hop and often used affectionately. That word is not available for me. I also think of Queer. The Sho Time series, Queer as Folk reclaimed that word to give it some positive spin, and it’s also become a way to say, I’m different but I’m proud. . Words come and go depending on the culture and time we’re living in. I’ve never used the R word talking about a person, but I have used it with It before it — about an idea. I’m Jewish and a friend of mine, also Jewish said “I Jewed him down.” I felt myself flinch. I guess in the end, all words are living, breathing things that will continue to change long after we’re gone. I heard you were in Tucson for Barflies — if you ever come again, please let me know xoxoxLaura

  2. Another powerful post! Thank you, Amy!!

  3. Thank you so much for sharing this! I’m saving this and sharing it with my communications colleagues so we can be better informed when we write copy related to mental health and disability. And as the mom of a little girl with Down syndrome, I love that you had the privilege (or maybe you viewed it as a burden) of revising this style guide. Thank you for taking on this difficult and nuanced work!

  4. What would help as much is a list if acceptable words. Ridiculous does not really work in most cases for stupid. What are the acceptable words? I dont even know how to ask the question for fear of being offensive.

  5. words . .the problem is they are limited by our eyes, ears and imaginations. I threw out all of them and became theatre:together .at least it’s a trifle less limiting and more fun to play with. . .
    One day, at an ASU football game my son responded to some loud, obnoxious men hurling insults at the other team. He stood, all 6’3′ of his out spoken, multi-brain damaged self looked these men in the eye and said . ” so, are you saying retarded is a bad thing?????”
    They changed seats . . I’ve lived trying to answer that question for all in my path. Thanks for being your brave outspoken self!. . . .xxxxx

  6. The language thing can be really hard. I struggle with it a lot, especially because I don’t actually have any, well, disabled people around me. And in my country, it’s not even at that point yet. People in wheelchairs can’t even go out most of the time, they’re completely isolated :( I went to England on a visit this year and was surprised to see so many people in wheelchairs out on the town, in festivals, eating out in restaurants. That doesn’t happen for people in Lithuania. It just doesn’t. It makes me profoundly sad. But I went on a tangent.

    Anyway, yeah, the language thing can be so complicated, especially because people have different opinions on different words (like you say), and I genuinely worry I’ll hurt someone, argh. So far, the hardest word for me to ditch is ‘crazy’ and ‘insane’. There’s just not a good replacement that’s emotionally on the same scale. Normally when I say that, I just mean “that’s very intense”, and not in a bad way a lot of times. Wish I found a better word for it.

    Also, just wanted to say, that’s an amazing photo of Sophie. She’s all grown up :,)

  7. I think that anyone who is afraid of saying something offensive is a kind and considerate person. We can’t be perfect but we can damn well try. I wonder if when talking to people with physical or mental limitations we can ask them what they prefer. My 11 yr old daughter asked about a man at a local lgbtq+ youth center and I said, “Honey, she is a woman.” To which my 14 yr old son said, “Mom, he’s a man. Pronouns. He/Him.” I’m learning to pay attention to pronouns so I know what people prefer and if I can’t tell, I’m working up my courage to ask.” My girlfriend is black and she told me she prefers the term black as opposed to African American. I have mental illness and I don’t have a problem with the term “crazy” but it bugs me when people say they are “OCD” (being OCD is so much more and so much worse than wanting to keep your desk neat). I distinctly remember 20 years ago when a coworker referred to a customer as “mentally unstable” right after I got out of the hospital the second time in a month for my mental illness. She didn’t know I had been in the hospital and it wasn’t meant to make me feel bad but it did. Your piece is a good reminder to check my language so I don’t make others uncomfortable.

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