How do you say?

When I complimented my daughter by telling her that her hair looked like tousled waves, she was confused. Then she realized why and told me I was pronouncing tousled wrong: “It’s “tussled,” she said. I insisted the first part was said like “tows,” as in, rhymes with cows. We deferred to my husband, who said she was right.

Welcome to my world.

Because I’m deaf, I don’t pick up on the pronunciation of many words. This means inevitably botching it, which is a little bit easier when done among family.

I still remember one time when my folks were visiting me in college. My sister was talking about a play she had to read for high school English: “Antee-gone.” It took us a while to realize she meant “AnTIGinee,” or “Antigone.” She was embarrassed, but we told her better it happened with us than in class.

I emailed a couple of my deaf friends to ask them how they would pronounce “tousled.” It made me feel better when they said they’d use the same mispronunciation. I mean, really, we say “mouse,” and “house,” so why does it not translate for this word?

I thought “pom-eh-gran-at-ee” was how to say pomegranate. Doesn’t it look like it should be pronounced that way? I still have trouble remembering, especially since I like my version better.

Yet I know how to correctly say hyperbole. Perhaps I have my degree in English literature to thank for that.

When I discover that a word I’ve been saying — either in my head and/or out loud — for years is wrong, it never fails to blow my mind. It’s like the whole world has to be recalibrated.

There’s no pattern to my word crimes, though maybe they occur with words that aren’t said out loud as often. One constant is that sometimes the English language makes no fucking sense.

“Star Wars theme begins”

My most vivid memory of Star Wars is reading it in graphic novel form with my dad as preparation for the movie, because of course, captioned films didn’t exist in the 70s. I asked if he remembered which movie the book covered. “I don’t remember the name, but it was the one that had these giant mechanical things that clomped along,” he responded. “They sort of looked like an animal, and I think storm troopers were inside.” This made me laugh out loud, because this is the main thing I remember too.

I googled “Star Wars Trojan horse,” and discovered this vehicle is called the AT-AT Walker, or All Terrain Armored Transport. (Cut me some slack; I’m not a die-hard Star Wars geek like my husband.) An attack by the Imperial forces and the AT-AT Walkers on the ice planet Hoth was part of The Empire Strikes Back. Bingo!

I was seven when that film was released, which would explain why I also recall having trouble with some of the words and concepts on the pages. We brought the book to the theater, where Dad helped me follow along. I’m amazed that I remember so much of this, but what’s even more amazing is that my father took the time to ensure I was a part of this pop culture phenomenon.

Now that most movie theaters have captioning, I was looking forward to seeing The Force Awakens on the big screen to get the full effect. My enthusiasm was dampened a bit by a friend’s experience. She lives in another state, but what she encountered is all too familiar for those of us with hearing loss. She posted on Facebook, “Well at least [husband] and the boys got to watch the Star Wars movie.” Despite having gone to the theater earlier in the week to ask about the captioning system and make sure it was working, on the day of the movie she tried three different sets of glasses, had the attendant test it, and nothing worked.

“The captions were only visible out one lens of the glasses, so one side was blurry/cut off,” my friend wrote. “Then the captions would start and then every second to third line would be a blank green box with no words. THEN (and this is the best part), it would start captioning words to songs and the year they were released…”Greatest Hits, 1977″…in between the words of the movie. Yeah, that’s not distracting at all!!!!”

Ironically, she had stopped going to movies because she was so fed up with this recurring issue.

Generally, I’ve had better luck, but almost every time, have run into a problem. Most previews aren’t captioned, so I don’t know if the captioning is working correctly until the movie starts. It’s a wonder I don’t have an ulcer, especially with the endless trailers.

When we left for the theater to add to Star Wars’ box office record, I brought some things to do in case I had to leave my family at the theater. We got there an hour and 15 minutes early with prepaid tickets and were first in line for our showing. We got our favorite seats, which meant an optimal spot for captioning. We asked one of the managers to be there once the movie started in case we needed to try a different captioning device. He said to give him a thumbs up or down.

During the opening crawl, when the captions read “Star Wars theme begins,” I knew the force was with me.

The verdict: Thumbs up for the captions working, and thumbs up for the movie!

Show me your cards

My son has the incredibly annoying habit of showing his cards when we play games. If he’s holding them up to his face, it doesn’t matter, because he’ll reveal his hand when he picks up a card from the deck or adds one to the pile. WHATEVER he does, his flashing is hard to ignore and makes me feel like I’m cheating because I have knowledge I shouldn’t.

Pushing his cards into his chest or saying “I can see your cards!” for the billionth time gets old real fast.

I stumbled onto a solution when we recently played Sorry Revenge, which I received as a gift. I was told that the game takes a little while to get into but then becomes addictive, which we found to be accurate.

My enjoyment in playing was dampened by Doran’s lazy habits. We’re a family that loves games, but this was going to be a serious detriment; I had to do something to save us. I told Doran that for each card of his that Samara or I saw, we would get to flip over one of our own, bringing us that much closer to winning. To make it fair, we extended him the same courtesy.

Needless to say, we had a bit of fun repeatedly exclaiming with glee, “I saw [insert number] of your cards!” Since the object is to turn all four of your “pawn” cards into “home” cards, we had a huge advantage.

Doran quickly knew that he was in trouble. After a few rounds, we realized that the strategy seemed to be working – even if Doran was at one point keeping all his cards face down in a pile so he wouldn’t accidentally reveal any.

The real test, however, will be the next time we play. Has his behavior truly changed or will we need to reinforce our new “rules?”

Either way, I think “hitting” him where it hurts is a good motivator. I bet we can adapt this method to get him to chew with his mouth closed – something we’ve been on his case about for years. We can threaten to take away — either in minutes or days — his most precious commodity of screen time each time he noisily chews.

I think Lysistrata would approve.

Lessons from my daughter

The first time I heard of the word pansexual was from my eighth grader. I had to look up the definition. My husband thought it was a Dr. Who reference, which it is, but it’s also one of many sexual identities of which my peers and I are likely ignorant.

A later conversation with my daughter resulted in more homework. Words like “demisexual,” and “heteroromantic” were foreign to me. Apparently these terms are being discussed among her classmates. I told her that most of my counterparts probably wouldn’t know what they meant either. “You’re from a different generation,” she oh so kindly explained.


It’s a different world now, that’s for sure. I applaud their knowledge and openness, and hope that this will increase self-awareness and confidence.

While my daughter may not know who (the original) Holly Hobbie is (hello, childhood bedroom wallpaper!), at least she’ll be familiar with Captain Jack Harkness. And I’d rather she know the latter.

El Deafo

It’s not often I get to tell an author in person how much her work means to me. I had the opportunity to do this recently when I went to Pittsburgh Arts & Lectures Kids and Teens with my son to see Cece Bell.

Cece is an author and illustrator currently on tour for her graphic memoir El Deafo. Among the many accolades it has received, it was listed as one of the the NYT Notable Children’s Books of 2014, NYT Notable Middle Grade Books of 2014, and is a 2015 Newbury Honor book. What’s great about all of this attention is that this book has entered the public consciousness.

When my parents gave it to me soon after its release, I hadn’t heard of it. I actually kept it on the shelf for a long time, assuming it was about a deaf person who used sign language to communicate. Every time my parents visited, my mom would ask, “Have you read El Deafo yet?” When I finally admitted my reason for procrastinating, she told me it was actually about a deaf person who spoke and read lips. Well, then!

I gave the book five stars on Goodreads. My review:

When my mom loaned me this book to read, I was reluctant because I assumed it wouldn’t show the speaking deaf perspective and would be all about sign language. It’s ironic that I made the same mistake that everyone else makes about me (assuming I sign), but in my defense, it’s rare that this perspective is shown – and with such poignancy and humor. I kept saying “Yes!” out loud because I could relate to many of Cece’s experiences. Unlike Cece, however, I hated the Phonic Ear. I used to always complain, “Just because it makes it louder doesn’t mean it helps!”

I’m glad Cece learned how to share her superpowers and be comfortable with them, but I couldn’t help but cringe a little at how her classmates “used” her.

The note from the author at the end is also on point.

I made my kids read the book too, because I wanted them to get a better sense of my childhood. Cece’s book illustrates in wonderful detail what it was like to lose her hearing from meningitis at the age of four, and follows her ups and downs through elementary school.

A speaking deaf friend of mine also gave this book five stars. We both liked it more than our kids did. In her review, she wrote, “I expected to be disappointed by the book, figuring it would go down the all-to-predictable path of sign language. However, it turned out to be a very realistic representation of what some of my childhood was like. Cece tried sign language but it didn’t resonate with her and I believe this is the first time I have ever seen sign language mentioned in a book (fiction or non-fiction) on deafness where it wasn’t portrayed as a major part of the deaf person’s life. This book will go a long way to dispel stereotypes that every deaf person signs.”

The note from the author at the end that I referenced? Cece writes about differences in deafness – the cause and level of deafness vary, and so does communication. She talks about the Deaf community, or Deaf Culture, where sign language is the main mode of communication and deafness is viewed as a condition that shouldn’t be fixed. Deafness is considered their main identity, whereas for people like me and Cece, it’s just one part of who we are. In her note, Cece emphasizes that her experience is hers alone.

This is why I was surprised when she shared a different point of view in her talk. She said the school she attended — which had other deaf children — believed in only teaching them how to speak and lipread. They felt if sign language was taught, it would be a crutch. Cece said she doesn’t agree with this now, and wishes she had learned sign language. During the Q&A phase, someone asked what the Deaf Culture reaction was to her book. She admitted that she was scared for the potential fallout. Maybe she made this comment about sign language to appease those folks, but I wish she had tempered it a bit. Especially since research shows that the mostly signing “total communication” approach just isn’t as successful as other modalities.

One of my friends — a parent of two deaf boys with cochlear implants — attended the talk with her older son and had a similar reaction as me. She felt this was a somewhat careless way to appease Deaf Culture. “My (admittedly biased) perspective is that she wouldn’t be where she is now if she’d learned sign back then,” she said. “I truly believe [my son] wouldn’t be where he is now if he’d gone to a sign language program. I wish she had just stuck with ‘everyone has their own story and this is mine.'”


Otherwise, Cece’s talk was great. She had the audience laughing throughout. She started off with an experiment. When her back was turned, we all yelled HELLO! as loud as we could at the count of three. With her hearing aids on, she heard us. Then we did it again, with her hearing aids off. Naturally, she couldn’t hear us. I think a better experiment would have been to have some volunteers play the game of Telephone to demonstrate how difficult lipreading can be.

I got to see my nemesis, the Phonic Ear, again as Cece actually had hers from childhood. She put it on to show how bulky and embarrassing it was to wear.

Cece was asked why she wrote her memoir in graphic novel form. She said it was the perfect medium to tell her story because of the speech balloon, which allowed her to visually show what life can be like for a deaf person. An empty speech balloon, for example, shows that little Cece isn’t hearing anything. A panel with the audiologist has him saying, “RAAY YOE HANN WAH OO EER AAH BEEP!” And one of my favorites is the panel in which he adjusts the dial on her FM system and the text shows the volume increasing by going from light to bold.

An audience member asked why Cece used bunnies instead of people. She explained that it’s a great visual metaphor for hearing loss: ears that stand out, especially with the cords and ear molds going into them. Teachers often forgot to turn their microphones off, so Cece was able to hear them in other parts of the building, like the bathroom. Because of this, she began to think of her deafness as giving her superpowers.

Interestingly, Cece wasn’t comfortable with her deafness until recently; she didn’t like to advocate for herself. But an incident at her local Kroger turned things around and started her on the path to writing El Deafo.

A boy in the audience asked if she planned to write a sequel (stealing my question!). She said she has lots of ideas but hasn’t done anything yet.

After the talk, we waited in line for a long time to get her autograph, but it was worth it. I told her that I was born three years after her in the 70s, and that her book was meaningful because it mirrored a lot of my own experience. Gesturing to my son, I said that it was great having my kids read it to gain a better understanding of my childhood.

She asked what I wear, and I told her a cochlear implant and hearing aid. I alluded to the fact that she’d benefit more from a CI than me, because (unlike me) she was post-lingually deafened.

I also encouraged her to write a sequel. Every stage of life brings different challenges, and I’d love for El Deafo to continue to educate and entertain.

I’m a writer, but not an illustrator. Cece is both, and I thank her for bringing our shared experiences to life in a way that I never could.