Deafness Is Not a Flaw

I read an article in The Guardian today that prompted this post. Sarah Marsh writes about her experiences as a deaf person, having worn hearing aids since she was a toddler due to genetically acquired hearing loss. She talks about how she had always thought of her deafness as a flaw until she met a young woman, Rosie at University, who changed the way she viewed her deafness. She stopped seeing it as a flaw and embraced it despite all its challenges. Like Rosie, she faced many challenges, not the least of which was straining to lip-read during lectures and worrying about being able to hear and participate in conversations.

I related to much of what Sarah had to say. In my late twenties, I found out by accident that I had mild hearing loss. I mentioned to my GP that I had a heavy feeling on one side of my face and she referred me to an ENT specialist, who had me do a hearing test. He told me I had mild bilateral hearing loss that was unexplained and could have been a result of an illness suffered by my mother when she was carrying me. This new information made me think of situations that may have been indicators, such as how even as a very young child I couldn’t hear certain things that my sister, who has always had acute hearing, could. At the time I first learned of it my hearing loss was not an issue for me, except that my sister (the same one) with whom I shared an apartment used to complain that I had the TV on too loud after she had gone to bed.

During that first hearing test, as I strained to hear the sounds, I heard buzzing in both my ears. I hadn’t noticed it before because it was there in the background and I must have thought it was normal. That is when I discovered I had tinnitus. At the time I did not pay much attention to it. As the years went by the noises became louder and changed sometimes, from buzzing, like insects, to other louder sounds. At times I would hear music playing or other sounds that were not there in reality. A woman I worked with at that time had mild tinnitus, belonged to a tinnitus support group and encouraged me to join. I know that support groups are enormously helpful to many people experiencing a wide range of life events, but I felt that I was starting to focus too much on my tinnitus. I was starting to pay a lot more attention to the noises, they were keeping me up at night and I started to experience anxiety about something I had no control over. Eventually, I made a decision that I was not going to go bananas over something I could not change, so I learned to live with it. Before I knew of its existence I was fine, so I went back to ignoring it for the most part and paying much less attention to it when I was reminded of the noises.

Some years after my initial hearing test, after the birth of my children, a repeat test showed that my hearing had deteriorated. A few years after that I was diagnosed with Hashimoto’s Thyroiditis, a thyroid-related autoimmune condition that possibly caused or contributed to the hearing loss. My hearing has gradually deteriorated since then but has been fairly stable in the last ten or so years, with mild deterioration.

Many people with hearing loss are embarrassed by their condition. I certainly was. I acted as if there was something wrong with me and to some extent I still do. I felt as if I should apologise for not being able to hear what people were saying. People close to me appeared not to understand when I said that they should speak clearly and be facing me when they speak. My husband of 36 years still talks to me with his back turned and has been known to mumble.

People with hearing loss face challenges that people with normal hearing don’t think about. When my mother lay dying, my sisters and I and close family members were at her bedside. As the others spoke in whispers I looked on, not hearing a word and feeling the frustration of being left out of a conversation. When someone asks “Did you hear that?” and I say “No” this can be met with disbelief, as if to say, “How can you not hear that?” Trying harder does not improve hearing. When you are in a group situation and having a conversation with someone who speaks very softly and does not make any attempt to change their speech even when they know you have a hearing loss, it can be frustrating.

About eight years ago I stopped being in denial about my hearing loss. I would go to meetings and not be able to hear what people were saying. I would attend seminars and not hear what was being said, or have to always sit in the front row so I could hear and lip read. I couldn’t hear much of the dialogue in a movie. People would talk to me from behind and I didn’t respond. I am sure many people thought I was a snob or rude. I realised that I was slowly closing in on myself and my world was becoming smaller due to not being able to hear well. I finally worked up the courage and got my first pair of hearing aids, which made life so much easier, although it did not solve all the challenges facing me. My hearing loss is in the higher ranges where most of the voice frequencies are, so hearing speech is difficult. I had a manager who, despite repeated reminders, mumbled and did not speak clearly. I found myself having to go up to her so I could hear what she was saying, and then feeling resentful that I was making concessions to other people when it should be the other way around. I made a presentation at a team meeting about communicating with deaf people, but it made no difference. People with normal hearing often don’t get it.

A few years later, I am now equipped with hearing aids with Bluetooth capability, and when I watch a video on the iPad or my phone, the sound comes straight through to my ears and is wonderfully clear. I also make and receive calls hands-free, with my hearing aids picking up the call. I can go to the movies and turn up my hearing aids so I hear every bit of dialogue. I recently met someone who is obviously very hard of hearing and later his wife commented that he needs hearing aids but refuses to consider them. I mentioned that I wear hearing aids and she was surprised, not only because they are almost invisible but because I have very little trouble hearing under normal circumstances. I strongly recommend hearing aids for anyone who has trouble hearing. I waited much too long before getting mine

There is a slight downside to wearing hearing aids with Bluetooth capability. I sometimes remove my hearing aids and use earphones, when watching a video on my laptop. If a phone call comes through it can be confusing for the caller because I pick up but they can’t hear me and I can’t hear them until I remember that the call is coming through my hearing aids, and either turn off Bluetooth on my phone or quickly put on my aids. When I forget I have removed my hearing aids and make a call, the other person picks up but can’t hear me.

For those of you reading this who have not paid much attention to communication with people with hearing loss, here are some tips:

• Speak clearly. Not necessarily louder than normal, just enunciate your words.
• Make sure they are facing you and can see your mouth because they rely on lip reading.
• Don’t speak to them if they have their back turned.
• Don’t expect them to make all the effort. If you have a colleague or co-worker with hearing loss find out what they need from you so they can hear and understand better.
• NEVER whisper to someone with hearing loss. It is embarrassing and discomfiting for them. If you have something you want to say to them privately, go somewhere away from people and speak in a low, clear tone.
• Be aware that when communicating with a person with hearing loss, they may be too embarrassed to admit they can’t hear you, and you may have a whole conversation with them and they might have heard less than a third of what you said.

Please become more aware of those around you who cannot hear well, and remember that a few simple changes like the ones mentioned above would make a big difference to them.

And if you have hearing loss and have considered getting hearing aids, do some research and talk to people who wear them, to see if it will work for you. They are costly but worth it if you can manage the financial outlay.

On a lighter note, an elderly relative who still has amazing hearing recently asked me: “I don’t mean to be rude, but are you deaf?”