Many of you know me as a self-proclaimed data geek, a champion for advancing women in the workplace and even a bit of a retail industry junkie. What you likely don't know is that I live with moderate hearing loss. I am choosing to share my story on this, World Hearing Day, with the hope of ending the stigma associated with the deaf and hard of hearing community. This year’s theme, Hearing Care for All, calls upon each of us to promote the importance of screening, rehabilitation, and communication.
DISCOVERING I WAS DIFFERENT
Just like many children in the United States, I received vision and hearing tests in elementary school. As a child I was told I had nerve deafness and that it was hereditary. I didn’t really know what that meant, and my parents and teachers took no extraordinary measures on my behalf. Looking back now I acknowledge that I instinctively learned to cope with my hearing loss by making small changes, such as sitting at the front of the class and asking people around me what was said if I missed something. I suppose somewhere along the line I realized it was difficult to discern similar sounds like the ones “S” and “X” make. My hearing loss compounded with my then undiagnosed Dyslexia directly impacted my ability to spell –thank goodness spell check finally came along.
My hearing became less of an issue when I entered the workforce until six years ago, when I noticed I started to use the extra volume functionality on my cell phone. Not only that, I found myself leaning into the speakerphone to hear during conference calls and coworkers even started to comment how I was always saying “what” and “could you repeat that”. I eventually noticed that if I wasn't directly looking at a person it was nearly impossible to understand what was being said, that made routine business functions like networking events and dinners extremely difficult to navigate.
RECEIVING A PROPER DIAGNOSIS
I could no longer deny that my hearing loss, which was stable for most of my life, had drastically deteriorated over the last few years. I am so fortunate to live outside Boston, where I have access to one of the premier specialty hospitals dedicated to hearing -Massachusetts Eye and Ear (MEE), is not only an international center for treatment but the world's largest vision and hearing research center; it is also a Harvard Medical School teaching hospital. It was here, at 40 years old, that I was diagnosed with moderate sensorineural hearing loss; a permanent and progressive hearing loss that occurs when the delicate nerve fibers of the inner ear are damaged. This diagnosis was difficult to receive –thoughts immediately flooded my mind... Would I lose my ability to hear completely? How long would that take? How difficult is it to learn ASL (American Sign Language)? How would I communicate with my family and friends? Would I forget how to speak if I couldn’t hear anything? Could I continue to work?... the list was endless. It took me some time to fully process my diagnosis and to get a grasp on how my life would continue to be impacted by it.
My team at MEE is amazing; they made a real effort to get to know me, understand my professional lifestyle as a consultant and digital nomad and even asked about my hobbies outside of work. I didn’t realize it then, but this was a critical stage in development of my personalized treatment plan. First and foremost, the plan included the recommendation to begin utilizing a hearing device. It was suggested that I use hearing aids with Bluetooth capabilities so that I could stream phone calls and other media devices directly into my hearing aids. It was also suggested that I wear protective devices like noise cancelling headphones on airplanes and high-fidelity earplugs in extremely loud situations like the country festivals and concerts I love so much. What I didn’t see coming was that my hearing loss affected more than my ability to hear -I developed tinnitus (a ringing or buzzing in the ear) and significant balance issues which cause me to experience prolonged bouts of motion sickness and nausea. Adding the use of an allergy nasal spray helped to open my sinuses and relieve pressure in my ears, while simple things like acupuncture, pressure point wristbands and Dimenhydrinate help me actively manage the symptoms brought on by motion sickness.
ONE OF THE LUCKY ONES
In my effort to learn more about the deaf and hard of hearing community I quickly realized that I am the lucky one and grateful beyond belief. I have access to and the financial means to receive ongoing treatment and management of my hearing loss, not to mention consistent full-time employment. The statistics regarding this community are heartbreaking and simply unbelievable.
430 million people globally have disabling hearing loss that requires rehabilitation services, by 2050 it is estimated to almost double –that is nearly 1 in every 10 people on the planet.
Only 17% of those who could benefit from the use of hearing devices actually use one – one of the largest barriers to entry is the lack of accessible healthcare the other is cost.
In the United States the cost of hearing devices is not routinely covered by health insurance. One hearing aid can range from $1,000 -$4,000, with premium hearing devices costing as much as $6,000 per device. However, less than $1.40 additional investment per person is needed to scale up ear and hearing care services globally.
The unemployment rate is staggering – fewer than 40% of people with a hearing disability work full time.
While these statistics are eye-opening, they don’t begin to explain the mental and emotional impact hearing loss has on many members of the community. Studies show that deaf individuals experience social‐emotional difficulties at a rate as high as two to three times that of their hearing peers. This has been especially true during the COVID-19 pandemic. Nonverbal communication, such as body language accounts for 55% of total communication and 38% is related to tone –leaving just 7% for the spoken word. While masks have become common place as a matter of ensuring public health and flattening the COVID curve; they significantly compound the social isolation that exists in the deaf and hard of hearing community. So much of living an active life in a hearing world stems from an ability to comprehend facial expressions and to read lips. If you have a deaf or hard
of hearing friend or colleague, try wearing a clear or “smile” mask like the ones from ClearMask when you are with them. I could go on, but I hope you are beginning to understand why it is important to talk about hearing health and end the stigma that still very much exists.
BE AN ADVOCATE
The great news is together we can provide a more inclusive experience for our families, friends and colleagues who belong to the deaf and hard of hearing community. From a professional standpoint, so many of us are working remotely, you can leverage built-in accessibility features in applications like Microsoft Team sand Zoom. Here are a few other things to consider at work:
Ensure that all important corporate communications are available in writing and that a designated person is responsible for alerting deaf and hard of hearing employees to the communication.
Accessibility is also critical for training, particularly training videos or self-guided virtual training. Assist deaf and hard of hearing employees succeed by providing closed-captioning and transcripts of training.
Workspaces should include telephones capable of video relay calls (for ASL fluent employees) or a text phone.
If you are hosting meetings provide a space that allows for good visual access and a direct line of sight to the speakers. For larger meetings you may consider providing the services of an ASL interpreter.
In the unfortunate event of an emergency in your workspace, having visual cues such as flashing lights and establishing a buddy system will go a long way in making your deaf and hard of hearing employees feel safe.
I am hopeful that in learning more about the challenges we face in the working deaf and hard of hearing community you will become an advocate for us and help create a genuine and authentic inclusive workplace where we can reach our full potential and contribute positively to our companies’ overall performance. If you are interested in learning even more, visit World Hearing Day 2021: Hearing care for all.
