Do Your Homework: on writing marginalized characters

Whenever I pick up a book that has a character with hearing loss, unless I know the author is either #ownvoices or has actual knowledge of my disability/culture, I proceed very cautiously. Why? For starters I have spent my entire life being well aware that “hearing” people do not understand hearing loss and most have preconceived notions on what it means to have a hearing loss, those notions being wrong. I have also read a few books over the years that made me want to scream with how badly hearing loss was presented.

So when a new book stumbles across my path, I am honestly not expecting it to get it right.

A new book, a romance in fact, with a deaf character was recently brought to my attention. I found it at my library so I picked it up (more on this later) and started reading.

By page seven I had thrown the book on my bed in disgust.

Without pointing to the specific book and author, because that’s not my intent here, let me share a few facts: 1) the deaf character was not identified as deaf when first speaking. 2) the deaf character lipreads almost perfectly. 3) the deaf character feels bad when others struggle to communicate with them.

None of the above are realistic. Add to that, the deaf character is sweet and innocent and perfectly content to live in their little deaf bubble without full access to communication.

Did the author do any research? Heck, the deaf character is signing while speaking, a nearly impossible task as the two languages have different grammar structures. The author even referenced some sign, and as far as I can tell, completely invented the motion.

This is all before chapter two.

And here’s the part that absolutely kills me: this book is readily available at a library. It’s published by a Big Five publisher. This book, with its wholly inaccurate portrayal is given a prime spot to be shared. Because in publishing no one stops and questions authors on their diverse material. Because in publishing some authors don’t take the time to do their homework and care about accurate portrayal.

Because this book helps continue the misassumption the world at large has about hearing loss.

A book like this makes my life harder. It continues to allow people to think I can understand them, or should understand them. It doesn’t give me respect for being a strong person. It doesn’t acknowledge my needs and educate.

It fails.

This book lays next to me as I type and I’m going to try and read more, maybe the deaf character’s POV will change my mind? (First paragraph is a screaming no) Maybe somewhere along the way it will redeem itself.

This has got to stop! Not just with hearing loss, with all marginalized groups. Authors everywhere enjoy writing about people different from them. Great! But don’t think that someone else is going to catch you if you mess up. This is on you. This is your job.

This book I have borrowed? It should be a comedic romance. Yet my blood is boiling and my stomach churning. There is nothing fun or romantic about this.

And here’s another interesting element: at no point on the cover or the blurb does it mention hearing loss. Now, I have my own stories where the hearing loss is a secondary factor and not needed there, but where’s the representation? Where’s the respect?

Nowhere.

My apologies to this author. I’m sure you’re a lovely person and a skilled writer. But if you, or someone who has written outside their lane like this, reads this, please, take a moment to think. Why did you write about my world? What was your goal? Because unless it was to piss us off, you failed.

I’ll say it again: You FAILED, because this isn’t a little, “Oh, how silly, they think we can all lipread like people hear, that’s funny.” This is something that lays insult on top of insult.

It hurts. And it helps make sure that others will hurt us as well.

What You Can Learn From The Laurel vs Yanny Debate

For full discloser: I haven’t listened to the sound bite. I honestly don’t have to. Every day I hear things incorrectly, or differently, than other people. Every day I struggle to put the pieces together and guess at missing words or overall concept.

Hearing people listen to this amazed at how people hear things differently. Welcome to my world.

Seriously, this isn’t a fun game, this is reality. Even people with “perfect” hearing will hear things differently from time to time. Now add in a hearing loss. Can you imagine that? Can you imagine thinking someone’s name is Laurel and then find out it’s Yanny and feel like a complete idiot?

Because I’ve been there. Heck, I live there! Hearing loss is not a straight line, most of us lose higher frequency sounds first. I’ve mentioned this a few times but I’ll mention it again: my right ear can’t hear the “h” sound. It’s a complete gap of sound. Sometimes my brain is able to fill in the gap to identify the word, other times it can’t.

My hearing loss is also mostly genetic, it goes up and down, which means I’ll hear certain sounds clearer than others, leaving room for more misunderstanding.

Listen to the sound bite and have fun with it. But also take a moment to consider what it teaches. Hearing isn’t black and white, it’s filled with shades of gray and ranges of color. Not all of us have full access to all those ranges. Laurel vs Yanny might be a fun afternoon for you. It might lead to fights among family and friends.

It’s my life.

(One more point on the whole issue, from a person named Laura: The L and the R are the last two sounds acquired, and therefore the hardest (thanks Mom and Dad!). I’ve often said my name on the phone and the person responds, “Okay, Barb, how can I help you?” Now, granted, sometimes my tongue doesn’t work like I need it to, but I haven’t for the life of me figured out how I manage to make my name sound like Barb!)

The Art of Lipreading

True story from yours truly: I began learning ASL at the age of eighteen. When a family member found out their response was, “shouldn’t she learn how to lipread?”

In actuality I had been lipreading for years. My hearing loss was undiagnosed until I was five. When I started speaking wrong (“pasghetti” for spaghetti, “alligator” for escalator), my mother would say to me: “no, look at my lips.” That’s how I learned to speak. That’s how I avoided needing speech therapy.

So I must lipread fluently, right? Wrong. Lip movements themselves only account for about 20% of sound, the rest comes in tongue and throat placement. Watching lips is an excellent tool for me to help identify sounds, because as my ears are scrambling to make sense, the lip movements will eliminate options. But without sound? Yeah, I’m not getting it.

That’s why there’s the joke that “olive oil” can be mistaken for “I love you.” Heck, let me use a current example of my favorite show, Once Upon A Time. When they filmed the climax of season one they were out in the streets, so they had fans watching. Two characters called out to each other, but the viewers knew them to be under a curse, so even though the script called for them use the characters’ real names, they used fake names with similar beats, and then dubbed over with the correct sounds.

And yet so many people think that lipreading is a thing. It’s a guessing game. I will admit some people are very, very skilled at it, and some people with hearing loss get by with lipreading. But to state that someone should just learn how to lipread, is to be completely ignorant on the topic.

This doesn’t even get into facial hair, mumblers, fake vampire teeth, etc. I put a character in SIGNS OF ATTRACTION that was a teacher with a very big mustache. This was taken from my own life. I had a macroeconomics class in college with a foreign teacher and big bushy mustache. This was before I had any assistive accommodations. I couldn’t understand his voice, and I couldn’t see his lips to help me. I passed that class by grace of my textbook alone.

Still don’t believe me? Take a look at this video. How well do you understand these speakers once the sound cuts off?

https://www.youtube.com/watch?v=n1jLkYyODsc

Hearing Loss Terminology

There are lot of different terms used to describe a person with a hearing loss, and a lot of acceptable and not acceptable terms are widely misunderstood. As a writer of books regarding hearing loss, I often have to bite my tongue when the wrong term is used. I know the terms are not being used with any negative intent. I’ve experienced the wrong terms being used my entire life (try being in the hospital and having your own preferred terms ignored and not feeling good enough to correct the nurses).

So, here’s a rundown of some of the terms:

Hearing Loss: Blanket term that covers all forms of hearing loss, from mild to profound.

Deaf: This term implies that a person’s hearing is in the profound range, meaning they have “absence of useful hearing.” Some deaf people can still hear sounds, some hear nothing at all. Some speak. Some do not.

D/deaf: In the Deaf Community there is a thing called “little d” and “big d.” Simply put, someone who identifies as Deaf (big d) is a culturally deaf person. They are a part of the Deaf Community. Someone who identifies as deaf (little d) is just that, deaf. They are probably in the hearing community and might not know ASL, prefer speaking to the best of their ability. There is no right or wrong here, but with every book I write I am explaining my usage of D/deaf. Because when discussing deafness as a disability, there is no “big d,” that term is reserved for statements involving identity.

Hard of Hearing: This is a term for someone with some hearing loss. This person is not deaf, this person is not hearing. Often times they will wear hearing aids to help boost their hearing abilities. Like the D/deaf above, a person can capitalize to denote identity and being part of the Deaf Community. As a whole, being hard of hearing is a very vast term. We range from an older person with a little late onset hearing loss, to a person who has significant loss and has worn hearing aids most of their lives, to many variations in between.

Late Deafened: This is a person who normally is born hearing and loses their hearing later on in life. Could be they started losing their hearing as a child, or a teenager, or in their forties. Regardless of when they started losing their hearing, they are now deaf.

Hearing Impaired: Uh uh. No, just no. Unless you use this term to self-identify—and rock on with your bad self if you do—please do not use this term. We are not impaired. There is nothing wrong with us. And many of us feel our ears make us part of a linguistic community. This term does not encompass all forms of hearing loss. This term is hurtful to most of us. If you pay attention to my writing, I only use this term in the negative sense. And even when I have a character who would self-identify this way, I opt not to.

Mute: Another term to avoid, especially when using a combination of deaf mute. Many deaf people opt not to use their voice. Many have also been forced to speak and go through hours upon hours of speech therapy. Like “impaired” it is often frowned upon.

Deaf-Blind: This is a person with a hearing loss and vision loss. Like the hearing spectrum, this person could still have usable vision, but often times meets the legally blind criteria.

As for me, I was born hard of hearing. My identity wavers between Hard of Hearing and Deaf, and in ASL I often use both signs simultaneously. For one main reason: my right ear is considered deaf. Now, I still wear a hearing aid in that ear. I still hear with that ear. But I also don’t listen with that ear. If someone is talking to my right ear, I have to move them to my left ear in order to comprehend. Yet that ear does okay in speech recognition tests, mainly due to my hearing loss being moderate in speech areas of sound. Another big thing about me: I grew up without the community. It wasn’t until college that I sought out an ASL class that changed my life and brought me home.

Any terms I’ve skipped over that you want an answer to? Comment on it below. I love questions and am happy to discuss. Just please don’t assume what terms I prefer.

Deaf Awareness Month Giveaway!

Back in August, I began planning a little something special for September: Deaf Awareness Month. Only my research pointed me to 2015, and to Deaf Awareness Week, which was earlier this year. If anyone planned on continuing the celebration of awareness, it was a hidden notion less than a month ahead of time.

Flash ahead to the end of September, and I finally see my first instance of Deaf Awareness Month. Now, I know the world has a lot of different causes to spread awareness on, and it’s hard for any one group to gain attention and voice. But to see an important even like this nearly pass with limited acknowledgement, that makes me sad.

Because we do need Deaf awareness. We need people to understand what it means to have a hearing loss. There are so many misassumptions out there, presented as facts, that it takes an open mind and time to understand the truth.

Fortunately, I’m a writer, and I have my own way of spreading awareness: I write about hearing loss. My Avon debut features hard of hearing and Deaf main characters. And since my hard of hearing heroine is very much on the outside of hearing loss, the book involves her journey into learning about and accepting her ears.

I traveled a similar journey when I began taking ASL classes in college. I went from disliking my ears, to them being such a positive part of who I am. And that’s the biggest thing: many people with a hearing loss are happy as they are.

In honor of Deaf Awareness Month, I’m giving away FIVE epub versions of this novel, SIGNS OF ATTRACTION! Click on the rafflecopter link below for your chance to win.

a Rafflecopter giveaway

Captions for Phone Calls

For years I’ve known of the development of a phone that would provide captions real time for people with a hearing loss while talking on a telephone. This technology was something I looked forward to, as phones scare me a bit. The nature of having a hearing loss: I miss things. Sometimes phone connections are choppy, sometimes my hearing aids have feedback, sometimes the person talks soft or in a difficult pitch, sometimes they have an accent.

Sometimes I can’t hear.

Now, I have a TTY, a teletypewriter, and a video call device. I could call someone on the TTY, or use an interpreter. Only I’m used to talking on the phone. I can voice for myself and hear some, if not most, of the time.

My audiologist has a caption phone in her office. A bit of a large phone with a digital display. I saw it one trip and we discussed getting it for me. It wasn’t until the next trip that I brought it up and set the ball in motion.

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I was getting a caption phone.

But this isn’t a simple, pick up a phone and plug it in. I had a technician come out to the house, to install this phone. A phone that needs my landline, a power outlet, and my WiFi. A phone that when the receiver is picked up, an operator is automatically available.

The installation was quick, as I’m familiar with technology. I’ve got a touch screen to access the features of the phone. Something difficult for many users. This makes perfect sense for me, but won’t for many of my readers: the average person with a hearing loss is someone with late onset loss. The ideal person who wants this phone, the ability to speak for oneself and have words to follow, is an older person. Someone who might not be familiar with smartphone technology.

I’m not this person. In fact, my technician commented on how well I heard compared to his other clients.

The phone itself is simple. When the phone rings, I pick it up, and an operator is ready to type out whatever the person on the other end says to me. My words are not involved.

There is a delay, as it takes time to type up words. And this will be the most difficult part for me. I’m very much aware of social norms in communication. And not hearing, asking for repetition, or having a delayed response are not them. So with this phone, I’m more likely to respond, then see the words and ensure I’ve responded correctly.

I’ve used it a few times, once to order Chinese food, where the operator struggled but heard much more than I did! It’s a wonderful tool. And it reduces my phone anxiety. There’s nothing worse than having someone repeat themselves over and over and not being able to hear an important date, word, or number.

If this sounds like something you or a loved one might want, I’d suggest talking to your audiologist. If that doesn’t work out, check out http://captioncall.com.

As for me? I’m not going to be quite as worried the next time I need to make an important phone call. And there’s nothing worse than taking a nerve wracking phone call, and upping the nerve factor!

Captions at the Movie Theater

I’ve blogged in the past about captions for movies, and how disappointing it is when the captions are not available, or not covering the entire movie (i.e. when music is ignored). But what about movies shown in the theater?

Some theaters use open captions, and it’s usually a specific, limited showing where the captions are offered, often in off peak hours that can be difficult for those of us with regular 9-5 jobs. These captions are shown on the screen, just like watching captions at home.

But there’s another option—at least in my area—a personal captioning device. Simply put, this is a device that displays the captions on a small box only the person requesting it can see. When I first started using these devices they reflected a scrolling marque in the back of the theater. Now it’s an internal device, with the captions pre-programmed.

I’ve only used them a handful of times, because I don’t go to the theater often. And that’s due to these devices having a pretty bad track record: I tend to get free tickets when my captioning doesn’t work—because what’s more disappointing than not being able to see a movie once you’re already watching the start of the film, only there’s no captioning—and I’ve had about a 50-50 success rate.

The above picture is from this weekend’s attempt to watch a movie. First time I was able to bring my son to the theater and had captioning for myself. My husband and I had free tickets since, surprise surprise, the last movie we saw (Deadpool) had a captioning issue and I missed half the film. And if you think Deadpool is an easy character to lipread, as nice as Ryan Reynolds’ voice is…

So, there I am, in the theater, wayyy up close, with my captions set up and my fingers crossed.

And the best thing happened: even though previews are usually not captioned, three of ours were! Not only was it awesome to get the full impact of the previews, but this also told me ahead of time that everything was going to be okay. I was not going to have to leave my son and husband behind to get my captions fixed as the movie began (as I’ve done far too often). I was not going to have to sit outside while they watched, or watch something I couldn’t fully understand. This was going to work!

Then, the movie started. I held my breath. And you know what the very first thing I saw was? Music being captioned!

So this is how I watch movies in the theater. Now, my hearing means that sometimes I can hear enough. But it’s really a hit or miss: I have no way of knowing ahead of time how the acoustics will work. It does take some adjusting, since the captions are right up close, and the screen is far away. When it works, it’s a great experience.

Vlog: SIGNS OF ATTRACTION Inspirations

You’ll notice something different in this vlog: I’m not speaking. I’m using ASL only. If you don’t understand ASL, click the CC button (can be found on the lower right hand part of the screen) for captions. Yes, it’s a little awkward, but it’s how I and others with a hearing loss watch videos, television, movies, etc. It’s why I’ve taken the time to caption all my vlogs.

As SIGNS OF ATTRACTION releases next week, this is my last prepared vlog. If you want to see more from me, let me know! Make a comment and give me ideas for future vlogs.

If you haven’t pre-ordered your copy, click here for options!

Breaking Down Generalized Assumptions About Hearing Loss

With a week until SIGNS OF ATTRACTION releases (insert me dancing around and breathing into a paper bag) I’ve begun to notice a few interesting things about writing about hearing loss, namely something I’ve known my whole life.

Hearing loss is one of those things that people think they know about, but in reality they know the generalized incorrect information that floats around. Part of the reason why I write what I write, beyond utilizing my own ears and life experiences.

So, let me break some of it down for you:

  • I do not use hearing impaired in my novel, except in reference to negativity. Because hearing impaired, for those of us in the Deaf Community, is a negative term. It is not a term that encompasses all types of hearing loss. It’s negative. I am not impaired, I am not less then, I am different.
  • On the flip, some people (and some other countries) with a hearing loss do consider themselves hearing impaired. That’s their term and they are free to use whatever they want to self-identify. If you do not have a hearing loss, please refrain from using this term unless someone with a hearing loss uses it first.
  • Hard of hearing vs deaf: A person who is hard of hearing has some usable hearing and usually benefits from hearing aids and is able to communicate to some extent with the hearing world. A person who is deaf has no usable hearing, and while they may get some environmental sounds, are not able to communicate easily.
  • Deaf vs deaf (as well as Hard of Hearing vs hard of hearing): Capitalization is a cultural indicator. I am Hard of Hearing, because it is a part of my identity, but I was born hard of hearing, because this is my disability. You’ll notice in my book that Carli and Reed use these terms differently because of where they each are with their own identities.
  • Hearing aids, as I’ve mentioned in my vlog, are not corrective tools. They amplify sounds, make things louder. They don’t make me hearing, and they don’t make Carli hearing. The worse a hearing loss is, the more distorted the sound and less voice recognition is received. I don’t listen for comprehension with my deaf ear, there are certain sounds I can’t hear, even with hearing aids.
  • ASL is a full language. While some people can write in ASL, most ASL users use English for writing and reading. ASL does have a different grammar structure than English, it’s not Signed English (which is another debate I could go into, but it has nothing to do with my novel).

And that’s it for now! I may make another post later on, but until then, pre-order my book, there’s lots of goodies in there about hearing loss, and some amazing characters to meet!