The Hearing Loss Advocate You Don’t Want to Be

An advocate can significantly impact the hearing journey process, both in positive and negative ways. Our own Sarah Bricker shares her own “bad” advocates story and offers tips to help other advocates avoid the mistakes in the story below.

In high school, my hearing loss wasn’t that bad, in fact I refused to admit I had one. My best friends Naomi, Alexi and Lori on the other hand…they refused to let it go. They made themselves my own personal hearing-advocate posse.

“Sarah, you can’t hear. Go get help,” they would politely say each week throughout freshman year. 

“Brix, did you hear what I said?” they’d ask before repeating the same question two or three times, each repetition louder and slower than the last. 

“Bricker? Bricker? BRICKKERRR!” they’d yell when I didn’t respond to a question or conversation junior year. 

By senior year, we really didn’t have classes together anymore and I traveled every week for horseshows or track meets. The phone became our sole mode of communication and they didn’t even try anymore; they just texted. 

I showed horses all summer after graduating high school, avoided their calls and skipped parties. I didn’t want to be told that I couldn’t hear and had a problem every five seconds. I’d convinced myself they were imagining things and ignored every mention of hearing loss, disability or hearing aids. I ignored them because they made me mad, frustrated and annoyed. No one wants to be told they have hearing loss or need help. It’s not fun, and it didn’t matter that getting help results in a better, easier life (I know this now after getting hearing aids earlier this year).

Hearing aids aren’t trendy like glasses and are thought to be associated with grandma and grandpa. This isn’t true, but when you’re in high school and peer pressure piles up, the last thing you want to worry about is hearing aids. The last thing you want is to be “different.” 

Lori ended up with me at the University of Missouri in the fall for college. Alexi and Naomi both ended up on the East Coast. I lost touch with Alexi and Naomi a bit over the years, while Lori and I bonded over yellow and gold, pizza at Shakespeare’s, driving at night with the windows down and trying to sing Luke Bryan.

For the first few months of college, Lori forgot I had hearing loss. She didn’t mention it once, didn’t bug me to get help and didn’t try to slip information about hearing aids into everyday conversation. She had stopped being a pushy advocate, and I loved it!

And then this happened:

“So you’re an engineer?” I said. 

“Yea, and you’re journalism?” he said. 

“Yep. Photojournalism right now,” I said. 

He leaned in closer and smiled.

“And you ride horses?” he said.

“I’m actually training one right now,” I said. 

He moved even closer, his left hand touching the edge of my right, and just as he leaned in…“Oh! She can’t hear you! She’s deaf!” Lori said as she slammed into my side, knocking me against the edge of the bar. “You have to like look at her when you talk because she can’t hear you otherwise."

Lori smiled, trying to stand with her arm hanging casually around my shoulder. I stood trembling with rage and refrained from pouring my drink on her white dress. He looked from me to her and then back to me again, stared at me strangely for a moment and then walked away.

That was the first night she tried what I called her “in-your-face” strategy, and it wouldn’t be the last. If I wasn’t going to admit I had a problem, then she was going to make it clear to everyone else that I did. 

I didn’t like what she’d done that night. I was angry and upset, and I felt violated. It was my hearing loss. They were my ears. And it was my business whether I told people they didn't function like they should. My parents started to push me soon after this, always telling me during phone calls that they’d be happy to schedule an appointment for me with an audiologist when I came home for holiday breaks. I hung up the phone when they did this, and it happened a lot. They kept doing it, so I started to just ignore their calls.

They kept pushing, and I kept retreating. I moved further and further away from the idea that I needed help and began to create coping tactics. Reporting meant scheduling all my interviews in person. Partying with friends meant one-on-one dinners or country bars full of music where no one talked anyway. And when classes started back up, I sat in the front, always faced the teacher or got a friend to act as my personal note-taker. Often, I was taking notes in class and then crosschecking with someone else’s to fill in the blanks at night. 

My parents pushed me to get help. And then my boyfriend did, too. They told me I had a problem. They cut me off when I tried to explain why I didn’t need help, and they continuously offered to take me to an audiologist and get me hearing aids. My friends at Mizzou learned to leave it alone, some of them even joked about it and made fun of me. They didn’t mean anything by it—it was all good fun—but it didn’t help.

When you know someone who has hearing loss, whether it’s a friend or family member, you want to help. But when it comes down to it, only they can help themselves. If you push them, they will pull away. If you talk at them and tell them what to do, they may, like me, start to ignore you and do the opposite, inevitably putting off getting help for even longer. My best friends in high school, Lori in college, my parents in college…they are all examples of how NOT to be an advocate.  

So if you want to help, learn from Lori and don’t make her mistakes. It’s better to be patient and open so that whomever you are advocating for feels comfortable enough to take the next step without feeling forced or coerced. 

Here are my top tips for advocates on how to help:

  • Always be open for talking about hearing loss and hearing aids. You never know when a person may be ready to take the next step.
  • Never tell others your friend or loved one has hearing loss unless they ask you to. Their hearing loss is personal, so leave it up to them to tell others.
  • If you notice a friend or loved one struggling, kindly ask how you can help. It could be as simple as facing them when you speak, using captions on the TV or slowing down your speech.
  • Do some research on hearing loss so that you understand what your friend of loved one is going through. For example, those with hearing loss often experience listening fatigue, so be understanding when by the end of the day they may not want to talk or seem tired.

Everyone’s hearing loss is unique, but being a good advocate is all about patience, compassion and understanding.  For more tips on how to be a great advocate, click here

 

By Sarah Bricker

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