Every Day I Advocate
By Debra Bare-Rogers
I was sitting in a classroom of 120 other graduate students, when I first discovered I was losing my hearing. Before that, I had no clue something was wrong. Classes, group meetings, homework, research—my schedule was full. Everyone struggles, right?
Then one day, I was typing notes on a shared Google Doc during class, when a classmate typed the message “That is NOT what the professor said! Weren’t you listening? Maybe you need to get your hearing checked.” Before that, it hadn’t dawned on me. I wasn’t hearing what was being said at the front of the room!
What did I do? I made an appointment with an audiologist and got a full hearing screening and evaluation. Conclusion: I had progressive mild to moderate sensorineural hearing loss in both ears. I purchased my first set of hearing aids for $6,000. (Surveys have shown that, on average, individuals wait seven years to do anything about their hearing loss. Delaying can lead to other health issues, including dementia and cognitive decline.)
I also reached out to the university’s disability clinic. They said, “We can help you. What do you need?” I had no idea what was out there. The clinic provided resources including a live captioner to transcribe classroom lectures; I read the captions on my laptop.
My professors were informed about what I would need to be successful in class: smaller groups in quiet environments, written notes, and extra time to respond to questions. I also learned about phone captioning apps. Without captions and Bluetooth-enabled hearing aids, phone calls can be stressful! At a time when I feared the unknown of losing my hearing, learning about available resources opened up a whole new world to me.
Debra Bare-Rogers experienced adult-onset hearing loss after losing her hearing overnight in 2013. “I had to learn how to navigate the world with my other senses,” she says. “Hearing loss is an important topic that is often not talked about.”
That was in 2013, and a decade later I live in a hearing world with progressive hearing loss. I am not totally deaf; I am also not fully hearing. Every day I advocate for myself. I recently had to replace my wonderful hearing aids with new ones, which are telecoil-equipped and Bluetooth-enabled. Through my insurance, I purchased them at a reduced cost. (Check your insurance!) Technology is advancing so fast—I can actually hear a clock ticking and my cat purring from across the room. I am amazed at the sounds I miss without my hearing aids.
Here are my other tips for communicating.
Want to chat on the phone?
Call my captioned phone or IP Relay app. This allows me to read captions of what you’re saying while we speak. Need to meet on a virtual meeting or conference call? I schedule Relay Conference Captioning (RCC) or use the automated captions available on Zoom or Teams. At work, I communicate using my voice, captions, American Sign Language (ASL), and hearing aids which are connected via Bluetooth to any device I need to use (such as my cell phone, captioned phone, laptop, or tablet).
Meet for coffee?
Depends on where. If the restaurant is too noisy, I can’t understand the conversation. Let’s meet somewhere quieter and I will use a captioning app (such as LiveTranscribe) on my cell phone, so I can better participate in the conversation. People forget, so I remind them to speak slowly, face me, and not cover their mouth when they speak. I request captions (well in advance!) when I want to attend any event—the movies, theater, rock climbing, or a conference. Without the captions, I would miss so much. This is my world today.
Stay connected
Hearing loss is an invisible disability and people with typical hearing don’t always understand. There are those with some type of hearing loss who just “deal with it” or prefer to keep it a secret. Connecting with individuals who also have hearing loss helps me manage daily life. I belong to several hearing loss support organizations. It is amazing to meet others who have similar experiences. We are out there! You are not alone.
Debra Bare-Rogers is an advocate at Disability Rights Maine, which provides information and referrals, education and training, assistance with advocacy, and legal representation for individuals with disabilities. As an advocate, she educates consumers and agencies about resources related to communication access, such as Maine Relay and the Telecommunications Equipment Program.