Tuesday, October 17, 2017

So Your Character is Hard of Hearing ... Featuring Lelia Rose Foreman + Kiara @ Bookends





When I was a kid and in my early teens, my piano teacher was actually deaf. A lot of people think that's an impossibility, but she could see the keys and feel the vibrations of the piano. Since then I've felt a connection to deaf and hard of hearing culture. I even took a semester of sign language in high school and whenever I see my piano teacher I sign to her. Whenever I see a deaf character in a show or movie I have good memories of my piano teacher. Some of my favorites are Emmett Bledsoe from Switched at Birth and Cass from Doctor Who. I'm really happy to have Lelia on the blog to give us some firsthand incite on being hard of hearing!

Let's welcome Lelia!

(Images aren't mine) 




Hi. I’m Lelia Rose Foreman. While following my Air Force Pediatric Husband around the world, I raised and released five children. I garden and make stuff. My favorite achievement was introducing a new crop to some Rwandan farmers. I also write science fiction and am collaborating on a YA science fantasy series with my oldest son, a video game artist.
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Kiara Kalmey is a young writer, ENFP, and dog lover, among other things. She has been wearing hearing aids since 2012 and is a firm advocate for the accurate representation of mental and physical disabilities in fiction. You can probably find her watching the latest Marvel movie, rereading Harry Potter for the umpteenth time, or over-analyzing the plots of books, movies, and TV shows.
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How does being hard of hearing physically feel? How do you think it compares to those who aren’t hard of hearing?
Lelia: There is no physical feeling particular to being hard of hearing. Before the cochlear implant, I did have a lot of tinnitus. For me, the sound was the pleasant drone of a far-off chainsaw which has positive connotations for me. In the morning I would fit a chorus or hymn to the dominant note of the sound and let the earworm carry me through the day. Some people have nasty tinnitus. Mine was okay.

When I became functionally deaf, I had my hearing tested yet again for a referral to a surgeon. I was disappointed to find that after the surgery I would still need to wear an outside appliance with a magnet that attaches to the magnet that has been drilled into my skull. Still better than the hearing aids that formed pressure sores in my ear canals. 

Have you seen the videos of people hearing for the first time and they’re so delighted! Not my experience.

I cried for six weeks after the surgery because the appliance shouted static at me all day long. All I could hear was static. I had been given a DVD with exercises to practice hearing. For instance, there would be a drum sound, and then a flute sound, and I would need to click on the picture of what was making the sound. I could not tell the difference. Each sound was just louder static I could not tell the difference between a cat and a cow.  I practiced hours every day and still, all I could hear was static. 

Six weeks later, as I was driving, I heard the turn signal. Not the first sound I would have picked to hear, but I heard it. It used to drive my kids nuts that I could not hear when I left the blinker on. So.a sound. The next day I started to hear the difference between a drum and a flute. And every day I could hear more. After six months I could carry on conversations in quiet rooms. I still have problems in noisy rooms and music mostly blares to me, but now people will talk to me. I can hear the radio. I can hear sermons. I feel like I have re-entered society.

Kiara: For me, I don’t particularly feel different physically due to my hearing loss, but depending on the kind of hearing loss, others might have side effects.

My hearing loss was present from birth. However, it wasn’t noticed or diagnosed until I was a month or so away from turning thirteen. Through several rounds of hearing tests and then a CAT scan, I discovered I have a condition called Enlarged Vestibular Aqueduct Syndrome (LVAS or EVA for short). Basically, that means that the tube that connects my inner ear and my skull is larger than normal (mine is about double the size it should be), and for reasons the doctors aren’t entirely sure of yet, that causes hearing loss. The condition cannot be cured with surgery, and so I wear hearing aids in both ears. The severity of my hearing loss is considered mild to moderate; there’s a high chance I will lose more hearing as time goes on, but thankfully that hasn’t happened yet. 

There are two main kinds of hearing loss: conductive and sensorineural. Conductive hearing loss usually affects structures in the outer ear, whereas sensorineural hearing loss affects the inner ear and the nerves. Those with sensorineural hearing loss might feel physical differences, such as dizziness, tinnitus (ringing in the ears), and a loss of balance. As for me, my hearing loss is a mixture of both conductive and sensorineural. I haven’t dealt with the physical side effects that others with sensorineural hearing loss have felt, other than some tinnitus now and again. I’d like to blame my clumsiness on the sensorineural part of my hearing loss, but I’m not sure that I can. :P 

So yeah, the hearing loss itself doesn’t really make me feel any different. Sometimes when I have my hearing aids out, it feels like stuff is muffled, but that’s really it. 

As for wearing hearing aids, they do feel different for a while when you first start to wear them. It’s more of a tickling sensation, a reminder that your ear isn’t used to something being stuck in it. Once you’ve worn your hearing aids for several months, that feeling will die down. I’ve been wearing hearing aids for about five years now, and I can’t even feel them when I have them in! It’s similar to getting used to wearing glasses or contacts.

How do you feel about being hard of hearing?
Lelia: It’s a dreadful nuisance and isolating.

Kiara: It can be difficult sometimes, but I love being hard-of-hearing and wouldn’t change it. That may sound weird, but it’s a part of me, and I accept it. I’m proud that being hard-of-hearing places me in a community that I wouldn’t be able to access to as a fully hearing person. 

What challenges does being hard of hearing pose?
Lelia: The dreadful isolation is the worst. Only one friend in my decades of being hard of hearing would sit by me during conversations and every few minutes would turn to me and give me a one-sentence summary of what was being talked about. My husband would take notes on a computer during sermons and I would then be able to follow the sermon at least somewhat.

Also irritating was the need to buy new hearing aids every few years for thousands of dollars each. That was a drain on the budget.

Kiara: Being hard-of-hearing affects communication more than anything else. I’m constantly facing challenges in any communication-based environment: work, school, friend groups, church, etc. 

As someone who is hard-of-hearing, I have to work extra hard to keep up with conversations. People seem to think that wearing hearing aids restores my hearing to normal, but they don’t. They just amplify sounds, which definitely helps, but they don’t make sounds clearer. I remember seeing one hard-of-hearing blogger describe hearing loss as a game of Wheel of Fortune. You catch some pieces of words or conversations and have to use those to figure out what you didn’t hear. That’s a good way to explain it, because that’s what I do a lot. Sure, sometimes I might not hear you at all, but often I’ll hear part of what someone has said and am able to figure out the rest using context clues. For example, let’s say you and I were talking about your dog. If you said something like “My dog really loves w___”, and all I hear is the W sound and not the whole word, I might guess that you said “walks”. Sometimes I guess wrong and sometimes I guess right, but it’s all about trying to figure it out. Of course, sometimes I can’t figure it out and just have to ask the person to repeat themselves. 

Here are some specific challenges that stand out to me:

  • I hate when I’m with a group of people and someone says something I can’t hear, and everyone starts to laugh. I feel awkward not laughing along, but I have no idea what was so funny. Sometimes I try to ask a nearby friend what was said.
  • I get self-conscious when I’m at work and have to ask a customer to repeat themselves several times. I don’t want them to think that I’m a bad employee and am not paying attention to them. 
  • Some people just don’t enunciate or speak loud enough, and when I ask them to repeat themselves, they don’t really change how they said it and I’m still lost in the dark. If I’m out with my mom, I’ll usually look to her and she’ll repeat what they said for me.
  • Sometimes when I try to guess what I didn’t hear, I get it totally wrong and it can get awkward. I recently thought one of my coworkers said she is learning Russian and got really excited before learning that’s not what she said at all. Similarly, when a coworker asked my favorite kind of pizza, I thought she asked my favorite kind of music and proceeded to tell her how much I love folk music. Those instances are the times that I get most embarrassed because I’m afraid people will see me as dumb for not understanding. 

Is there anything you like about being hard of hearing?
Lelia: Before I became badly hard of hearing, I had sound sensitivities that hurt around certain frequencies. If I find a sound irritating now, I just take off my microphone.

Kiara: Absolutely! Since I have a hearing loss, I am automatically considered a part of the Deaf community, which only includes people who are deaf or hard-of-hearing. If you’re hearing, you can be part of the deaf community, but not the culturally Deaf community. It almost feels like a birthright thing; I have a connection to a beautifully unique culture that I wouldn’t have if I had perfect hearing.

Additionally, being hard-of-hearing has given me the passion to become an advocate for those who are deaf/HOH. I can help others, especially children and teens, learn to be proud of their hearing aids and all the awesome things they can hear with them. A few months ago, I had a Twitter conversation with a Youtuber and was able to encourage his young son who is preparing to get a hearing aid. It was one of the coolest and most heartwarming things I have experienced, and I want to keep doing that throughout my life. 

Do you think your day differs from others because of being hard of hearing?
Lelia: Yes. I can’t call people and talk to them on the telephone. My contributions to a group conversation are often inappropriate or not on topic because I misheard something.

Kiara: Yes. Like I mentioned two questions ago, I have to work harder to efficiently interact with others. So yeah, some of my experiences and day-to-day stuff is a little different, but other than that, I do all the normal daily stuff. 

One thing I have to deal with that hearing people don’t is having to change my hearing aid batteries. Yes, hearing aids run on batteries! I don’t think a lot of people realize that. A pair of batteries usually lasts a week or a little longer, so I have to be changing them every week. Unfortunately, I’m bad at keeping track of when I last changed them, so I often find myself away from home when they die. 

Do you have any cultural differences between others who are also hard of hearing and those who are not?
Lelia: I cannot speak about the deaf culture. My hearing began to deteriorate in my late twenties. By my late fifties, hearing aids could not compensate for the loss anymore. I tried to learn sign, and after much practice could slowly sign very few words, but I could not understand sign directed at me.

Kiara: Deaf/HOH culture is a rich and beautiful thing. Unfortunately, where I am right now, I’m not around a lot of other deaf or hard-of-hearing people. Because of that, I haven’t fully experienced this culture and its differences from the hearing world. I really want to integrate more into the Deaf community and culture, so I’m hoping that will happen with time. After all, they’re my people!

Whenever I see someone with hearing aids or cochlear implants, I always get excited because it’s someone else who has a hearing loss too. I suppose I feel a connection to them because I know what it’s like. 

What are some stereotypes about being hard of hearing that irk you?
Lelia: Um, drawing a blank here. It would irk me when people would change topics and not notify me. I needed to know what was being discussed to make sense of what little I could hear.

Kiara: I’ll just shoot off a few, rapid-fire:

People believing that hearing aids make you hear normally again (and those people telling you that you heard them when you didn’t)
People believing that they need to talk extremely loud and slow when speaking to a hard-of-hearing person
When people use mock sign language when talking to me (this doesn’t happen often, but when it does, it’s offensive)
When people laugh when I miss parts of a conversation or draw attention to my confusion

Most of these aren’t specifically stereotypes of hard-of-hearing people, but these annoying actions do contain stereotypical beliefs inside of them. 

A big stereotype of hard-of-hearing people that I don’t like is that only elderly people are hard-of-hearing. I have to admit, I was guilty of believing that before I was diagnosed with my hearing loss. There are a lot of young people with hearing losses, and they deserve to be seen and recognized too. 

What media portrays being hard of hearing badly be it a movie, a book, or a TV show?
Lelia: I don’t see or read about hard of hearing people in any media, except for the very rare joke about a misunderstanding with a hard of hearing person. Most of the jokes I hear are told by my hard of hearing brother. Since all of my siblings and father are hard of hearing, our gatherings are very loud.

Kiara: I’m trying to think of a specific movie/book/TV show that portrays it badly. I think the two worst offenders are the lack of deaf/HOH characters in popular media and the jokes made about hearing loss from non-hard-of-hearing characters. You know, jokes where a character says something like “we need to get you hearing aids” or the stereotype of having to yell to be heard. Though I guess those aren’t too bothersome (I mean, I ask people if they need to borrow my hearing aids when they don’t hear me, so I make that joke too).

What media portrays hard of hearing well be it a movie, a book, or a TV show?
Lelia: I don’t know.

Kiara: Magnus Chase and the Gods of Asgard by Rick Riordan is one of the best portrayals of hearing loss I have come in contact with. It’s a book series about Norse mythology, and one of the characters is a deaf elf named Hearthstone. Although I am hard-of-hearing and not deaf, I appreciate how accurately Riordan portrays Hearthstone. He communicates through lip-reading and sign language, and he isn’t limited by his disability. He is powerful, talented, and downright amazing. He exists as a character outside of his disability, which means that his deafness is treated normally by his friends and he isn’t defined by his hearing loss. Riordan provides some interesting little details about being deaf, such as Hearthstone hating having his hands restrained because he can’t talk or keep his hands in his pocket if he doesn’t want to talk. He even hits on some of the difficulties that come with being hard-of-hearing; in one scene, he has a hard time keeping up with a multi-person conversation where no one is using sign language. 

Hawkeye, aka Clint Barton, from Marvel Comics has an acquired hearing loss and uses both a hearing aid and sign language. I haven’t read his comics yet, so I can’t speak on how accurate the portrayal is, but from what I’ve heard, it’s pretty good. 

I can’t think of any others, but knowing me, I’ll remember once I’ve already submitted this, haha. 

Who are your top three favorite characters who also are hard of hearing in books, movies, or shows?
Lelia: Uh, right. Don’t have any. Oh, let me mention what has made going to movies fun again instead of more reasons to be frustrated. I only go to theaters that have captioning glasses. The dialogue appears on the lens which I can position wherever I want, and I KNOW WHAT THE CHARACTERS ARE SAYING! I had stopped going to movies when my comprehension dropped to three words per movie. I go to lots of movies now. And I’m so grateful that television has picked up captioning. I had stopped watching. Now I can watch shows on Netflix with my husband.

Kiara: 

1. Hearthstone
2. Hearthstone
3. Hearthstone

Okay, I just really love Hearthstone. But he really is one of the best representations I’ve seen of someone with hearing loss and by far my favorite. 

Here’s my challenge to you, writers: fill up my other two spots with names. Names of your deaf and hard-of-hearing characters that break down stereotypes and revolutionize how the world sees us. If we want representation, we need to be the ones to write it. I can’t wait to see what you all do. 


Emmett from Switched at Birth

Thank you again, Lelia This is such a wealth of information! Thanks for reading!

Are you interested in participating in this project? Shoot me an email at howellvictoriagrace(a)gmail.com.

The Reviews.com team has recognized that quality hearing amplifiers can really make the difference when dealing with hearing loss. They created a comprehensive guide featuring factors to consider to help individuals and families choose the right one to fit their needs. They spoke with audiologists and tested nine products for appearance, sound quality, and the ability to filter different frequencies. Check out their compilation here!

Do you have any characters that are hard of hearing? Did this inspire you to write a hard of hearing character? Are you hard of hearing and you have further input? Feel free to share! Do you have any questions for Lelia and Kiara? Be sure to thank them!

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