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My Invisible Disability And Why WFH Made Me A Better Listener

We_Are_Intel
Employee
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The annual observance of the International Day of Persons with Disabilities was proclaimed in 1992 by the United Nations General Assembly. This day is about promoting the rights and well-being of all people with disabilities and raising awareness about their experience in all aspects of political, social, economic, and cultural life. Hear from Svetlana Isakharov, Development Tools Software Engineer, as she details her journey with an invisible disability.

 

"What is on the side of your head?" my friend asked after the long six-hour dinner. I explained that I have a cochlear implant inside my head and a processor outside that sticks to my head with a magnet. A cochlear implant is a device that allows me to hear sounds in a normal range of hearing. I went through surgery twice in the past 18 months to get this implant to work correctly, and now, after a lot of practice and rehabilitation, I can comprehend about 70% of what is said. This fact caught my friend by surprise. "You participated in the conversation at our table - I would never have guessed."  I have learned to read lips and interject conversation with commentary at the right time, only when I have heard the other person correctly. I try to fit in and be as normal as everyone else.

My invisible disability has made me a stronger person. I’ve learned to advocate for myself and am no longer ashamed to ask for support or ask for my co-workers to repeat or type information in a chat window. Because my disability is invisible, my struggles sometimes come off as incompetency. My disability does not define me, nor does it make me less qualified for my job.

I was born and raised in Russia. Ever since my teenage years, I have had profound hearing loss in both ears. I struggled with this and was ashamed to get help and talk about it with my friends and relatives. When my first daughter was born 20 years ago, I realized I could not hear her crying in the adjacent room. That's when I knew I needed to seek professional help. I immediately went to the ENT specialist and was fitted with my first hearing aids. 

Over the past 22 years, my career at Intel has had its ups and downs. I was shy, embarrassed, and always tried to hide my hearing aids. But slowly, my hearing was getting worse, and my hearing aids became less and less helpful. Hearing aids amplify sounds; however, they don't help to understand words.  I could hear a person talking 5 feet away from me, but I could not understand 80% of what was said unless I could read that person's lips. Phone conversations and online meetings through a "bridge" and or Skype were a struggle. English being my second language, made everything twice as hard. By the time my brain processed what I had thought I heard, it was too late to ask questions. I needed to see the presenter's lips, listen to what they were saying, look at their presentation, and take notes simultaneously. Imagine how extremely hard that kind of multitasking is. Often this experience contributed to my anxiety and sleepless nights.

While most of my managers were very supportive and helped me navigate my day-to-day struggles, some were not as understanding. Meetings in an open space environment were disastrous. With all the external noise, online meetings, people typing, or chatter around me, I could not understand anything at all. I had a manager who held a daily 15-minute stand-up in an open space around cubicles but unfortunately was unwilling to accommodate my needs by moving the meeting to a quiet conference room. I often rely on meeting minutes that I can read on my own time, allowing me to catch up on what I missed. When managers encourage meeting minutes and find designated quiet places to meet, it helps employees like me immensely.

I now have a hearing aid in my right ear and a cochlear implant on my left side.  I work from home due to the pandemic and rely on special devices that transfer sounds from my computer to my implant through a Bluetooth connection. During meetings, I turn on closed captioning on Microsoft Teams meetings (thanks for this latest technology), control the volume, and avoid multitasking. This allows me to pay attention to every word, read the closed captions, and follow the presentation. All outside noise is filtered out, which improves my word comprehension. Although sometimes I have to play a guessing game, my anxiety is reduced, and I can take hearing breaks without the fear that someone will speak to me over my cubicle wall, and I won't be able to hear. Since my entire team is still working from home, I feel more relaxed and comfortable, knowing I can hear clearly.

I hope that Intel will continue its accommodations for those with disabilities once we ease back to in-office work. I'd love the ability to have an individual office space when requested and have conference rooms equipped with the telecoil loop system technology that is embedded in most hearing aids.

For those who struggle with an invisible disability, my advice is to talk to your manager and coworkers and advocate for yourself. If you are struggling to hear, don't be shy to ask others to repeat what was said or to provide written notes.  

And if you happen to work with a person struggling with hearing loss, please speak clearly and loudly, but don't yell (Yelling does not help). If you are in-person, look at people while talking; they might be able to read your lips. 

2 Comments
HuguesMorin
Employee

Thanks for sharing your story. Inspiring!

Renea
Beginner

Svetlana,
As a person with documented disabilities, I thank you for sharing your fantastic story and advice. Kudos to you.

Respectfully,
Renea Wolfrum