Have you ever wondered what it was like to be truly deaf? Or wanted a way for your family to understand the experience of deafness, if only for a short time. I had the chance to confront these questions recently at an interesting exhibit entitled “Invitation to Silence” running at The Israeli Children’s Museum.
More than an exhibit, it was an interactive experience led by a deaf guide that served to help visitors get a better understanding of what it would be like to communicate as a deaf person. While some sign language was introduced, communication was primarily achieved through facial expressions and body language rather than formal signing. It was a fun experience and provided much food for thought about living with deafness.
To begin, our group of 16 donned thick headphones to block out all background noise. We were instructed not to speak, make other noises, or mouth words silently. We then followed our deaf guide through a series of rooms learning to communicate with him and each other in a variety of ways.
First, we learned to speak with our fingers through simple counting games (holding up the right number of fingers as we went around the circle) and shadow play (using our hands to make shapes on the table). It was fun to see how quickly everyone caught on to the games and how effectively we could communicate simple things to one another without words.
Second, we focused on conveying emotions. The guide displayed pictures of various items such as puppies, sushi, and garbage and we had to use facial expressions and hand gestures to indicate how we felt about the object. I found myself overly emoting to get my point across and noticed others doing the same. We may have felt a little silly at first, but it worked.
Next we learned about the visual nature of sign language — that signs often look like what they are referencing. For example, the sign for nose, looks like a nose. The sign for walking looks like walking. This was the pattern for many things.
We also experimented with names. I was asked to create a sign for my name — not finger spelling Shari, but a hand gesture that would be my name in sign language. Given my obsession with yoga, I chose Namaste hands. It seemed to work.
In the end, we put everything together, using our new skills and pantomime to have simple conversations within the group and to order beverages and snacks at the cafe. This was followed by a talk-back with our guide. We were joined by a sign language interpreter so we could ask our guide questions and understand his responses.
We learned that he had been deaf since he was a young child but attended a combination of deaf and hearing schools, sometimes with an interpreter for help. His family never learned to sign, and encouraged him to consider a cochlear implant. He was implanted in his 20s and while he is happy he has it for ambient noise and safety, he prefers sign language to communicating orally. This made sense to me given his life experience.
It was a fun and stimulating encounter, but focused exclusively on the Deaf experience, not the experience of someone like me, who is augmenting her residual hearing with hearing aids or other devices. It reinforced how much simpler it is to demonstrate the concept of deafness versus the more fractured experience of hearing loss.
With deafness, silence is presumed. Communication with sign language is expected. But with hearing loss, the lines are less clear. People assume that you won’t hear well, but when you do understand some of the things they say, it is hard for them to understand why you don’t understand other things too. It is a more complicated and nuanced affair.
Readers, have you had a similar opportunity to experience deafness?
Oh yes – when my first cochlear implant stopped working 10 years ago, and I had to be reimplanted, I endured 24 days of total silence. It was the catalyst for my second book, “Listening Closely: A Journey to Bilateral Hearing.” I wrote it in realtime, as I was experiencing it – and shows the devastating impact of sudden deafness. Thankfully, the new implant was successful and I went on to have my other ear implanted as well. But “24 Days of Silence” is eye opening.
Thank you for sharing your experience.
I often wish I could wave my magic wand and make the people I work with experience what I go through wearing two hearing aids…the frustration of not hearing on the phone…not hearing when someone is trying to get your attention talking to your back…not understanding everything in group meetings…and putting up with “you wear hearing aids.. turn them up”… Maybe…just maybe they will show a little bit of compassion.
You are not alone in feeling that way. Thank you for sharing your thoughts.
Or your coworkers state that you’re “lucky” because you can “turn off” your hearing. I get this all the time.
Every time I get the same responses. It is very frustrating, and hard to practice my own self control to not talk back to people. I actually did talk back once and made the other person very ashamed for how he treated me, but I can’t always do this. Then I get strange looks because I tend to show my frustration or annoyance facially!
And it’s hard as a “young” person because I’m “too young” to have hearing loss or wear hearing aids.
Hello Shari,
My name is Kathy Patrick.
I enjoy reading your blog.
I was wondering if I could share some of them on our HLAA-GSL Chapter Facebook page.
I found this one very interesting and could relate on a lot of levels. I am sure our members could too.
Thanks for your interesting blogs. I hope to hear from you soon.
Kathy
Feel free to share the links whenever you like. Thanks for reading and sharing!
I experienced sudden deafness 4 years ago on the 4th of July while watching fireworks. I pressed my fingers over my hearing aids tightly to block out the noise of popping fireworks, and after the display ended and I released my fingers from my ears, there was total silence. The on-call doctor at my otologist practice said I had sudden noise induced hearing loss which would likely be permanent. My husband and three children accompanied me to the pharmacy to pick up a steroid prescription that the doctor called in. We were all writing down notes to each other on paper, while I was crying and lamenting my deafness. It turned out that I had pressed so hard on my ears, causing ear wax to render me unable to hear anything. It was a terrifying 14 hours of deafness that I will never forget. The following year, I was fortunate to get a CI for my right ear, and between that and a HA in my left, I am grateful for the hearing that I have (while still struggling in many situations and always trying to improve my situation with assistive devices,…). The exhibit “sounds” fascinating – I hope it comes to Southern California one day, or I can go to Israel before it leaves!
I hope they take the show on the road so others can see it too. Thank you for sharing your story.
I have always been dear in my right ear. My left ear worked well until 10 years ago, and I finally accepted that I needed a hearing aid for my left ear. Three years ago, a simple cold virus reduced the hearing in my left ear to about 20%. I have a really good hearing aid now, with the levels adjusted to help me hear as well as possible, and a remote for the hearing aid that can change the settings of the hearing aid and which acts as a bluetooth connection for my cell phone. However, when my hearing aid is out, I can hear almost nothing unless the person speaking is standing right next to me. It has been a very difficult series of events to accept and learn how to cope; I was told I hear “too well” with my hearing aid to qualify for a cochlear implant. I too find it very frustrating to be in group situations and actually avoid them when possible. However, I work with kindergarten special needs students as an aide, and I need to keep working. Most of the staff at work are considerate and understanding, but not everyone there is. I wish they could experience what those of us with hearing loss or deafness experience every day. Thank you for sharing this… it helps. Your blog is a wonderful forum for those of us with hearing loss or deafness, and for our families and other people in our lives.
I am so glad the blog is helpful to you! Thanks for reading and sharing your thoughts.
I cannot express how actually happy it makes me knowing there are many others that share the same feelings and thoughts I do with our hearing loss. I am only 3 years into wearing HA, but it is still an adjustment if you think about the interaction required in the public, work, and even with family. I don’t have anyone close to me that can relate, but am so thankful to be able to read this blog, and read responses from others in this community.
Thank you all for making me smile on my more frustrating days!!
You are definitely not alone! Thanks for being a part of this community.
Total Deafness is a very scary and isolating disability and when you have a profound hearing loss , you are always one notch away from deafness. Always a worry if you will lose your hearing completely , especially as you age. I am sure those around us understand what it’s like not to hear , but they don’t always understand how to help accommodate us so that we don’t have to work so hard to stay functioning around them.
Thank you for sharing your perspective.
i attended a workshop here in the UK run by the charity Hearing Link. This was a residential course a week long to which partners were also invited. The most interesting part of the course was when the hearing parties had to wear ear defenders which also played white noise to them imitating tinnitus whilst trying to follow conversation. this was to try to give them some understanding of what it is like when you are hard of hearing. It was a truly eye opening experience for them.
Sounds like a wonderful course. Thanks for sharing the information.
I have nerve deafness I can hear to some small extent even with the loudest aid they can give me but the message doesn’t get through to the brain properly. So as someone said before when you do understand people think it can’t be too bad. I have given up all social/community activity except shopping and one event where I go out with four people at the table. Unable to follow the conversations just get bits and pieces. It is a discipline for me to sit there focus and respond appropriately for this I come home exhausted. My friends try hard to accommodate my hearing at the table but soon they become tired or forget and then stop talking to me directly. In situations where I have to shop, as I live alone, I just tell people I am deaf it is easier otherwise they keep talking to me they have no idea how hearing impaired I am and are surprised that I can talk for some reason. Many times I had said I wish I was completely deaf as the level of hearing I have is more annoying to me for all the reasons explained and I no longer am able to hear cars coming or birds singing.. To top it off I have constant tinnitus going on in my brain and the only peace I get is when I am in the garden and focused as soon as I come inside I notice the tinnitus again. Yet there is a range I can hear at where I do not qualify for a cochlea and it wouldn’t make my hearing any better at this stage. I believe in South Africa a doctor has been successful with the first operation on nerve deafness but it is just too late for me I am now 69 so there is hope for people in the future. I have gradually lost my hearing in both ears over a period of thirty years so I was once a fully active person even over a lot of that time and worked basically as a communicator so I have had a wonderful life not complaining but this is the best part of my life when I can go into to my garden and have peace living by myself I don’t have to try and understand what people are saying.
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Have you tried LiveTranscribe, a speech to text app? This might help you with social situations. Here is a post I recently wrote on this topic. https://livingwithhearingloss.com/2019/04/23/an-inexpensive-solution-to-live-transcribes-android-only-problem/ Thank you for sharing your story.
Hi Shari,
Is LiveTranscribe only available on Android ? I use an I phone and I pad and always looking for interpreting apps or caption programs .
Yes, but you can buy a cheap Android device to use just for this. You can read about it in the post.
Thats good idea on the android phone . Would love to check it out. Thank you .