Deaf Life4th October 2014
The Flip Side of the Coin
Cochlear Implants, Hearing Aids, Lip Reading or Sign Language, if you're Deaf it's all about choice
Sound has a profound effect on the senses. It can be both heard and felt. It can even be seen with the mind’s eye. It can almost be tasted and smelled. Sound can evoke responses of the five senses. Sound can paint a picture, produce a mood, trigger the senses to remember another time and place. From infancy we hear sound with our entire bodies. When I hear my own name, I have as much a sense of it entering my body through my back or my hand or my chest as through my ears. Sound speaks to the sensorium; the entire system of nerves that stimulates sensual response.
Louis Colaianni, The Joy of Phonetics and Accents
For twenty-eight years I was a hearing person. Then due to my Plunge to Fame hearing became a thing of the past. I entered the grey soundless world of the deaf. I was suddenly thrust into a place that was totally foreign to this woman for whom sound had played a large, vital role. We take so much for granted, don’t we? I thank the Lord that I was born in the time of Cochlear Implants. In 2007 a CI operation was performed on my right ear and in May 2013 on my left. For eighteen years, I was cocooned in this soundless world. With Cochlear Implants, I was able to take flight once more!
One truly appreciates something when it is taken away. To be given my hearing back is an indescribable thing. Wearing my Cochlear Implants, I now have access to so much. People have been given back to me. Before my CIs it was as if they were standing on some distant shore. I could see them but they were too far away to communicate. Now they are standing on the same beach as me and we are able to communicate once more. Do you have any idea how wonderful it is to sit at a dinner party and chat with the various guests? Prior to my CIs, dinner parties were a total nightmare. I would see people talking and laughing and that was all I was able to do. Hearing them was out of the question.
After my accident, music was my most traumatic loss. Music that I had loved so much just appeared as this meaningless jumble. After my first CI, Mum and I sat quietly together and she put a CD on. I waited with bated breath and then I heard: “It won’t be easy, you’ll think it’s strange, when I try to explain how I feel, that I still need your love after all that I’ve done…”
I remained staring straight ahead but tears were pouring down my cheeks. I could hear Elaine Page singing, 'Don't cry for me Argentina.' My music has been given back to me! Not only am I able to hear all of the music I knew and loved before my accident, I now am able to enjoy music that is totally new to me.
I am able to hear the birds sing. I can’t tell you how much delight I get from hearing birds twitter and chirp. I never want to go back to taking that precious sound for granted. I am now able to speak on a phone, go to theatre and films, listen to orchestras….So much has been given back to me. With my Cochlear Implants this deaf person is able to hear once more.
You cannot imagine my surprise at discovering a deaf person who had no wish to hear. She chooses to remain deaf. Let me tell you about Sarah Lawrence.
In June I had the chance to meet Sarah, the creator of the Deaf magazine, SLFirst. She and her business partner, Simon Deacy travelled from Wales to the idyllic cottage where my friend, B and I were staying in the Cotswolds. What a treat it was putting a face to this person I had merely been beene-mailing and 'chatting' to via social media in the past.
Sarah had mumps when she was three years old and became deaf as a result. When we met she her, she was wearing no hearing aids. She lip read everything we said. Things that she failed to understand, Simon would sign to her. How I wished that I could sign! I attempted to learn how, but with my spasticity and only forty percent vision, it proved too much for me. During the course of our conversation I said to her enthusiastically: “You should check and see whether you are able to have Cochlear Implants. Sarah, they are a complete wonder!”
Sarah looked horrified and said: “No, no, I would never have Cochlear Implants. I am happy being deaf.” She looked at my incredulous face and said, “I have no wish to hear.”
“But…” but….you’ve never heard. You don’t know what you’re saying! Imagine being able to hear children laugh, birds singing, thunder, the wind blowing….Sarah, those sounds are…they are indescribable.”
Sarah gently took my hand and smiled softly. “And I have no wish to hear them. I love my Deaf world.”
Is it because Sarah doesn’t know the delight of hearing that she is happy being deaf? I have thought a lot about our conversation. I asked Sarah to write about her deafness. Here is Sarah’s story: Someone who is happy in her deaf skin!
As a toddler, I was a lively little girl, loving life, learning and laughter. I don’t remember a lot, but I am told by my mother that I loved reciting nursery rhymes and singing, loudly! Aged 3, I contracted an unusual strain of mumps which caused me to lose my balance and fall over a lot. My mother thought that I could no longer hear, but considered an over protective hysterical mother by our doctor, it took many visits to the surgery before my deafness was diagnosed.
Cochlear Implants were in existence, even back then, but they were new and as far I know, they were not offered as an option to me.
A Deaf toddler in a hearing family with no experience of deafness, we were thrown into the hands of the Social Services and Education Authority. In truth, there was far too little information available to my parents with decisions on my upbringing and learning determined by the personal opinions of people in those departments rather than through informed choice. Sadly, in a lot of Local Authority areas, very little has changed in this respect, with one notable exception, more limited access to Deaf education.
I was encouraged to attend a mainstream school with a Partial Hearing Unit, where I spent endless hours trying to learn through teaching designed for children who could hear. Variation for me, came in the lessons that sought to teach me how to formulate words, using balloons and candle flames. I remember walking past a classroom one day and seeing a group of children being taught how to sign. I asked my teacher about it and was told that signing wasn’t for me, I was too intelligent for that apparently!
In those early years I tried wearing hearing aids, although all they gave me was some noise. They were big clunky things with a huge pack that I had to wear around my neck and on my chest. That pack might as well have had a few coloured rings on it, because it served as a target for other children, marking me out as different and, therefore, open to nasty comments!
I feel very fortunate to have been exposed to British Sign Language when I was about 9 and finally had the chance to start learning it when I was 15. Up to that point, I had been taught in a hearing school and had no Deaf friends or Deaf identity. It felt that I did not exist in either world, despite making a huge effort to conform to ‘hearing norms’.
I persevered with my hearing aids, despite them being useless for me for many years. As best I could I used my limited voice to make myself understood, but because of my hearing aids, I found that people just talked to me as though I could hear what they were saying or could lip-read. I could do neither and life became more and more frustrating.
Learning British Sign Language easily and quickly, I started to mix with other Deaf people. I took huge pleasure out of finally being able to relax when communicating, able to make myself understood without difficulty and fully understanding what was being said to me. It was as though someone had turned on sound for me, but the sound came in terms of signs, gestures, mannerisms and facial expression.
I attended audiology appointments annually, but despite developments in hearing aid technology, the noise I could hear never improved – it was just noise. I cannot remember ever being offered cochlear implants. About 12 years ago, I realised that wearing hearing aids and using my limited voice was actually giving people the wrong impression about my communication needs, so I decided to ditch the hearing aids and have not worn them since. I am a Deaf signer, and if people allow me to use my first language, I can be as fluent and descriptive as the next person.
I know that it is still common in all walks of life to describe and deal with deafness as hearing loss. It is instantly seen as a disabling quality, and in many aspects of life, is the means by which life limiting decisions are made around Deaf people. That has certainly been the case for me, in every job that I have had.
With Cochlear Implants becoming more and more common, I have been asked many times why I have not sought to have them fitted. I have also been asked if a magic wand could be waved to give me hearing, would I want it. I think it is hard for hearing people and late deafened people to understand that I wont consider cochlear implants and wouldn’t now want to hear. I also think that is hard for me to explain why.
I am a proud Deaf woman and being Deaf defines who and what I am in life. I feel a part of deaf life and deaf society. That is my identity. I know that at I am still relatively young and have many years ahead of me (well hopefully) but I feel I am too old in the tooth to try and carve out a new Sarah Lawrence. My friends and family know who I am, what I stand for. Don’t get me wrong, being Deaf still brings a lot of frustration, tears and sleepless nights, but I guess, the same applies to those who hear too.
Being fitted with cochlear implants would be no quick fix. They do not turn on knowledge and understanding of the noise you then hear, especially for someone like me who has no knowledge of what different things sound like. My deafness has given me the opportunity to express myself in different ways in life and in many instances, has helped me communicate effectively when working or holidaying abroad. I see things differently and I believe I am more visually stimulated than my hearing friends and colleagues. I have learned to use my deafness as a strength and it is only the world with which I interact that make it a disability.
I don’t say that I am right, life is about making your own choices and making the most of the opportunities that you have. I respect the right for people to make their own decisions, but in return, I expect people to respect my decision, even if they don’t understand it. Perhaps one day, deafness will be considered cool!
To read more of Gaynor's wonderful writing, just go to her Ear Ear Blog
Article by Gaynor Young & Sarah Lawrence
posted in Community / Deaf Life
4th October 2014