It's an invisible disability and generally easy to hide, at least physically, so why should I discuss it? That's what I convinced myself. I can hear well enough anyway, most of the time. Don't bring it up. Sound like denial? It was. I was incredibly self-conscious about my hearing loss.
It was an easy pattern to fall into. My father had a hearing loss, but it was never mentioned — a taboo subject, even within our immediate family. His hearing aids were always hidden behind sideburns, grown long for that purpose. I never remember him mentioning his hearing loss, asking for a better seat at the table, or a quieter spot in a restaurant. Often he could be found sitting off by himself at social gatherings. I thought he was shy, but the truth was he probably couldn't hear and didn't want to be embarrassed.
I am sad to say that my family was not supportive of him. My mother would often whisper secrets to my sister and I, knowing he could not hear. We would giggle behind his back when he misheard something and roll our eyes at every non-sequitur. I am not proud of this behavior. My only excuse, if I am allowed one, is that I was a child and did not know that the environment in my home was foul and belittled my father because of his disability.
Needless to say, I became well trained in the view that hearing loss was shameful, something to be hidden and never discussed. I took it to heart, so that when I first noticed my own hearing issues in my mid-20s, I hid them, panicked that I would somehow be a lesser person because of them. Later, when I got my first pair of hearing aids, I hated wearing them even though they were easily hidden behind my long hair. My mother's questions were not encouraging. "Do you really need to wear those?" she asked.
Eventually the answer became yes, I really did need to wear them, but I was not happy about it. I would slip my hearing aids in surreptitiously on the way to work and tear them from ears as the elevator door closed behind me on the way home. I began to avoid people I could not hear well and was often afraid to socialize or attend a class or a theater performance. I didn't want to be seen wearing those infrared hearing devices – then everyone would know I had a hearing loss!
But once I had children it all changed. I saw them watching me hide my hearing issues and I knew I was carrying on a legacy of shame and stigma. This was not what I wanted to do, particularly since my hearing loss is genetic and I may have been passed it on to them. I refused to let them feel embarrassed of something that was not their fault, something that was not shameful, something that was an issue for almost 50 million Americans. I needed to come out of my hearing loss closet.
So I did. I began writing and speaking openly about my condition and became an advocate for those with hearing loss, joining the Board of Trustees of both Hearing Health Foundation and Hearing Loss Association of America.
To show my children I am not ashamed, I now regularly advocate for myself at restaurants and movie theaters, and have taught my family steps they can take to help me hear them better. Friends and colleagues wondered why I was devoting so much time to hearing loss issues and I would tell them. It got easier and easier to accept my hearing loss, and overtime, the self-consciousness faded away.
Why was I so self-conscious about my hearing loss in the first place? My home environment was certainly a factor, but that is probably not the full story. There is a stigma that surrounds hearing loss that forces many to keep the issue hidden and untreated. This is sad because it can lead to isolation and depression for millions of people, but also dangerous. Recent studies link hearing loss to a number of health problems including diabetes, an increased risk of falls and dementia.
I hope that by sharing my story I can encourage others to accept their hearing loss, treat it, and continue with their vibrant and engaging lives. Only by doing so, can we turn the stigma on its head for good.
http://www.goodhousekeeping.com/health/a35191/accepting-hearing-loss/
